Exploring the experiences of British Indian male caregivers of a partner with
dementia
Kristy Rye
Submitted for the Degree of
Doctor of Psychology(Clinical Psychology)
School of PsychologyFaculty of Health and Medical Sciences
University of SurreyGuildford, SurreyUnited Kingdom
September 2019
1
Abstract of MRP Empirical Paper
Objective: While there is a growing evidence base about the experiences of male
caregivers of people with dementia, very little attention has been given to male
caregivers from British Indian communities within the UK. This study addresses the
gap in the literature aiming to gain an understanding of how male British Indian
caregivers experience providing care to a partner with dementia, so that services can
adapt where possible to meet the needs of a growing population of caregivers.
Method: Six male British Indian spousal caregivers completed semi structured
interviews. Data was analysed using inductive thematic analysis.
Findings: Three main themes emerged with a total of 8 subthemes. The main themes
were Dementia has changed both of our lives, Seeking help can be difficult and
Becoming a familial caregiver.
Conclusions: The findings highlight that caregivers experienced a significant
reduction in social activities as a result of their caregiving responsibilities.
Participants recognised dementia as a medical condition for which they sought
medical advice and they did not speak of stigma related to a diagnosis. Participants
did not wish to seek support from services until they could no longer manage due to a
desire to remain in control, yet they described the detrimental impact of this on their
emotional and physical health. There was a desire of not wanting to burden other
family members including children. Caring for male caregivers in this study was
understood as a marital responsibility. The clinical implications for the findings are
discussed.
2
Keywords: Dementia, Carer, Ethnic minority, British Indian, Spouse, Partner, Male
Acknowledgements
I am grateful to several people throughout my three years of clinical training. Firstly, I
would like to thank my research supervisors, Dr Paul Davis and Dr Paul Hanna, for
your support and encouragement throughout the process. Your enthusiasm for
research has kept me going during the painstaking stages of drafting and re-drafting. I
am also thankful to Dr Sarah Ghani for your advice and suggestions during the initial
stages of the project. Additionally, I would like to express a huge thank you and
acknowledgement to all the participants in the research who gave their time, shared
their personal experiences and spoke so honestly with me.
I am thankful to my clinical supervisors who have helped to make my placements so
enjoyable. Each supervisor has provided me with many opportunities which have
shaped and enhanced my learning to become a clinical psychologist. Their knowledge
and dedication has inspired me through training and it has been a privilege to work
alongside you. I am also grateful to my clinical tutor Dr Jane Iles, who has been
always been available, supportive and encouraging.
Finally, I am thankful to my incredibly supportive friends and family – you have
celebrated with me during the good times and spurred me on during the challenges. A
special mention to my Mam and Dad, the ‘Essentials’, Lucy and Francesca and of
course Cohort 45. To my husband Jack who has been my biggest supporter, I will be
forever thankful for having you by my side. And to our unborn son who has been on
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this journey with me for the past 9 months – I hope one day this will show you that
you can achieve anything!
Table of Contents
Acknowledgements 2
Part 1: Major Research Project: Empirical Paper 4
Abstract 4
Introduction 6
Method 12
Results 18
Discussion 35
References 46
Appendices 1 to 16 57
Part 2: Major Research Project: Literature Review 92
Abstract 92
Introduction 94
Method 101
Results 108
Discussion 130
References 136
Appendices 1 to 2 145
Part 3: Summary of Clinical Experiences 155
Part 4: Table of Assessments Completed During Training 158
4
Part 1: MRP Empirical Paper
Exploring the experiences of British Indian male caregivers of a partner with
dementia
Abstract
Objective: While there is a growing evidence base about the experiences of male
caregivers of people with dementia, very little attention has been given to male
caregivers from British Indian communities within the UK. This study addresses the
gap in the literature aiming to gain an understanding of how male British Indian
caregivers experience providing care to a partner with dementia, so that services can
adapt where possible to meet the needs of a growing population of caregivers.
Method: Six male British Indian spousal caregivers completed semi structured
interviews. Data was analysed using inductive thematic analysis.
Findings: Three main themes emerged with a total of 8 subthemes. The main themes
were Dementia has changed both of our lives, Seeking help can be difficult and
Becoming a familial caregiver.
Conclusions: The findings highlight that caregivers experienced a significant
reduction in social activities as a result of their caregiving responsibilities.
Participants recognised dementia as a medical condition for which they sought
medical advice and they did not speak of stigma related to a diagnosis. Participants
did not wish to seek support from services until they could no longer manage due to a
desire to remain in control, yet they described the detrimental impact of this on their
5
emotional and physical health. There was a desire of not wanting to burden other
family members including children. Caring for male caregivers in this study was
understood as a marital responsibility. The clinical implications for the findings are
discussed.
Keywords: Dementia, Carer, Ethnic minority, British Indian, Spouse, Partner, Male
6
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Introduction
In the United Kingdom (UK) there is an estimated 850,000 people living with
dementia (Prince et al. 2014). Of these, approximately 65% are women and 35% are
men (Prince et al. 2014). One of the reasons for the greater prevalence of dementia
among women is the longer life expectancy and age is a significant risk factor for
dementia (Bamford 2011). Dementia presents as deficits in memory and cognition
which can have an impact on a person’s daily living skills, such as toileting, eating
and dressing (Giebel, Sutcliffe and Challis 2015).
As dementia is a degenerative condition, when illness progresses, people with
dementia can become increasingly reliant on family members or professional
caregivers (Giebel, Sutcliffe and Challis 2015). Dementia care is largely provided by
family caregivers with approximately two-thirds of people with dementia being
supported in the community (Lawrence et al. 2008) and the majority of these being
cared for by their spouses (De Vugt 2006). The definition of a family caregiver often
referrers to the fact that the caregiver is unpaid, which is a momentous financial
saving for health systems (Bastawrous 2013).
Given the significant impact that dementia has not only individuals but their families,
it justifies the growing body of research considering the experiences of family
caregivers. This research aims to extend on the literature by considering the
experiences, needs and concerns of what appears to be a neglected group of family
caregivers, male spouses from a British Indian background (Johl, Patterson and
Pearson 2016). This is an important group to focus on given that people from Black
and Minority Ethnic (BME) communities are underrepresented in dementia services
in the UK (Livingston et al. 2001) with concerns that mental health services are not
8
well equipped to meet the needs of BME elders (Lievesley 2010). Additionally,
Indian ethnic groups are one of the fastest growing ethnic groups in the UK
(Lievesley 2010).
Caregiving
Providing care for people with dementia is a global issue, largely due to the aging
population and increasing numbers of people being diagnosed with dementia. It is
estimated that there are 700,000 family caregivers within the UK who provide care to
a family member with dementia (Lewis et al. 2014).
The research on caregiving has pointed to the significant burden of caring for a person
with dementia (Mittelman, Epstein and Pierzchala 2003). Family caregivers for
people with dementia have been shown to have higher rates of depression, illness and
lower rates of life satisfaction (Schulz et al. 2006; Pinquart and Sorensen 2003).
Behaviours that may be displayed by the person with dementia such as aggression,
agitation and night time wandering have all been linked to caregiver burden and
symptoms of depression (Gaugler et al. 2005). Additionally, behaviours such as
incontinence and immobility are reported to be predictors of family caregivers asking
for the person with dementia to be moved to a nursing home (Miyamoto et al. 2002).
The caregiving role has also been associated with a decrease in social support and a
restriction to the caregiver’s social life (Almberg et al. 1997). Social networks and
social activities can bring many benefits to a person’s wellbeing, helping them to
manage stressful situations and to help provide resources that can aid their caregiver
role (Cohen 2004). Therefore, a decrease in social support can have a detrimental
impact on the caregivers own physical health, wellbeing and finances (Zarit and
Whitlatch 1992). Due to the significant impact of being a family caregiver, there has
9
been a considerable amount of research into interventions aimed at reducing caregiver
burden. The psychosocial interventions such as skills training, counselling and
support groups have been deemed largely successful in reducing symptoms of
depression and stress (Brodaty, Green and Koschera 2003).
In order to access such support, people with dementia or their caregivers need to be
linked with a professional service. However, it has been acknowledged that caregivers
of people with dementia are not always accessing support services (Brodaty et al.
2005). Several possible reasons for this have been identified including adequate
family support, feelings of invasion of privacy and lack of knowledge about
appropriate services (Brodaty et al. 2005). Of all groups accessing support, there is a
particularly low utilisation of services for BME caregivers (Livingston et al. 2001).
Therefore, it is important to consider the experiences of caregiving in ethnic
minorities, including the help seeking patterns in this group.
Help seeking in South Asian minority groups in the UK
Research by Johl, Patterson and Pearson (2016) points to several important factors
that are relevant to understand the lack of help seeking by caregivers in BME groups
in the UK. Some cultures, including South Asian, normalised the symptoms of
dementia by understanding forgetfulness as a normal part of the aging process and not
considering this an important reason to visit the GP or access support. This has also
been supported in research by Berwald et al. (2016).
Similarly, Uppal, Bonas and Philpott (2014) reported that within the Indian and Sikh
community in the UK many spousal caregivers did not recognise dementia; there is
believed to be a greater emphasis on physical illness. For example, it has been
suggested that South Asians who visit the GP are likely to include physical symptoms,
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such as pain, into their presentation compared to White British populations (Nazroo et
al. 2002). This could be one reason contributing to why people from ethnic minority
communities who have dementia are less likely to receive a diagnosis and if they do,
they are more likely to receive it at a later stage than their White British counterparts
(Adelman 2010).
It was recognised across several studies that help seeking may not occur until
individuals are in crisis and symptoms are described as severe. This may be because
of the reasons described above but also a belief that memory problems should be dealt
with by the family first until reaching a crisis point (Mukadam et al. 2011). This was
found to be applicable to South Asian familial caregivers in contrast to the indigenous
population. It is important to note that within the research by Mukadam et al. (2011)
there was a large difference in the ages of participants ranging from 27 to 85 years
old. Therefore experiences reported may not be representative for spousal caregivers.
Research highlights the role of fear, shame and stigma associated with a diagnosis of
dementia within BME communities (Jolley et al. 2009). This can go some way to
explain the later presentation to services and therefore later diagnosis that is often
seen within this population. For some Indian males, it was reported that they felt that
memory problems threatened their position in the community and therefore they were
more likely to disguise any symptoms and the difficulties they were experiencing
(Lawrence et al. 2011).
Caregiving experiences in South Asian minority groups
When caring for someone with dementia the caregiver will often be adapting to an
additional role, for example, being both a spouse and a caregiver. It is important to
understand how individuals experience this change as it is likely to impact on their
11
relationship and identity. Within their South Asian sample, Adamson and Donovan
(2005) found that the caregiver experience was often accepted as part of the person’s
biography and an extension of the relationship. Participants who were South Asian
spouses expressed this extension to their relationship in terms of their perceived
cultural norms. For example, they held a belief that if you are married, it is your
responsibility to take care of your partner. However, the majority of participants in
this research were female and therefore we do not know if this is applicable to male
spousal caregivers.
A qualitative study by Parveen, Morrison and Robinson (2011) considered the
caregiving experiences of four ethnic groups; Bangladeshi, Indian, Pakistani and
White British. Bangladeshi, Indian and Pakistani familial caregivers believed that it
was their duty and responsibility to provide care to a family member with dementia,
whereas White British caregivers felt that they adopted the role due to their caring
nature. Female Indian caregivers expressed that they had been forced to adopt the
caregiver role whereas Bangladeshi caregivers suggested they were willing to provide
care linked to fulfilling cultural duties, as well as fear of an outsider not providing the
same level of care.
Furthermore, Bangladeshi, Indian and Pakistani caregivers said they would continue
to provide care due to cultural and religious obligations, compared to White British
caregivers who said they continued to provide care to avoid a nursing home
placement. However, this research has limitations in that the majority of participants
in the study were female (28 female and two male) and the caregivers were both
spouses and children, therefore we cannot generalise the findings to male spousal
caregivers.
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Male caregivers
Whilst female caregivers outnumber male caregivers in the UK, with almost three in
five caregivers being female, male caregivers still provide a large amount of support
(Office for National Statistics 2019). Despite this, the perspective of the male spousal
caregiver in dementia is a small yet growing body of research (Arbel, Bingham and
Dawson 2019).
Research suggests that whilst male and female caregivers share some experiences,
there are also key differences. For example, Harris (1995) reported that male spousal
caregivers can perceive their role as their duty. Previous research has often described
male caregivers as using instrumental or problem-focused coping, whilst female
caregivers use more emotion focused coping strategies (DeVries et al. 1997; Garity
1997; Lutzky and Knight 1994). However, within group differences were also
observed as some men discussed the emotional reaction to their partners’ dementia
while others discussed their role in more instrumental terms and focused more on the
demands of the tasks they carried out.
A review by Robinson et al. (2014) grouped research considering male caregiving in
dementia into three major themes: men’s experiences of caregiving, relational factors,
and outcomes of caregiving. Male participants often reported that formal services
were difficult to access, intimidating and bureaucratic. For males, help seeking was
also influenced by family closeness and factors such as cost of services, availability
and negative past experiences (Brown et al. 2007). Some men also reported feeling
guilty asking for help (Sanders 2007).
In the research by Black et al. (2008) it was reported that men who cared for wives
with dementia felt that the dementia constrained their lives just as much as it did for
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their partners. Studies have discussed the detrimental impact of limited access to
support and restriction of hobbies, interests and social support that caregiving can
have (Robinson et al. 2014).
In summary, research tells us that BME groups, such as British Indians, are
underrepresented in dementia services and are less likely to receive a diagnosis of
dementia than their White British counterparts. Research has helped us to understand
reasons why these populations may be less likely to access services such as cultural
beliefs about family responsibility and normalising symptoms of dementia.
Additionally, it has been suggested by Asian families that services can make
assumptions about families looking after their own (St. John 2004). This undoubtedly
impacts on the individual with dementia but also their family who are likely to
support them.
Currently there is extremely limited research with male spousal caregivers from BME
communities, particularly British Indian communities within the UK (Arbel, Bingham
and Dawson 2019; Johl, Patterson and Pearson 2016). Therefore at present we do not
have a good understanding of the experiences of this population of caregivers as most
of the research is conducted with female caregivers and merges caregivers of all
familial relationships. Further research with male spousal caregivers can help us to
build a picture of their experiences and determine if they have specific needs so that
services can adapt where possible to meet the needs of a growing population of
caregivers.
Research question
How do male British Indian caregivers experience providing care to a partner with
dementia?
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Method
Given the lack of research considering the experience of being a male British Indian
caregiver to a partner with dementia (Johl, Paterson and Pearson 2016) and the
underrepresentation of this population in dementia services, a qualitative design was
chosen to allow participants the opportunity to speak in detail about their experiences,
needs and concerns.
As we were concerned with participant’s experiences, the findings are likely to reflect
the meanings attributed to the experience by the participants. The research question is
about a subjective experience and perception; therefore, it adopts a relativist
epistemology and an idealist ontology (Willig 2013). This enables us to view
knowledge as having no absolute truth and that the only truths are what individuals or
cultures believe. It also enables us to consider that reality is constructed in the mind of
the observer. A semi structed interview was selected as a tool for data collection as it
lends itself to these approaches.
Inductive thematic analysis (Braun and Clarke 2006) was selected as the analysis
method to allow for the development of themes from the interview data without a
priori assumptions, fitting with the exploratory nature of the research. Thematic
analysis aims to make sense of the meanings of the phenomenon under investigation
(Willig 2013).
The data analysis followed Braun and Clarke’s (2006) guide for conducting thematic
analysis. The six stages as described by Braun and Clarke (2006) were followed. This
included becoming familiar with the data; listening back to the audio recording and
reading the transcripts several times. Secondly, initial codes were generated by
15
looking through the data and developing line by line coding (for example, personal
care and routines) (Appendix 2). Thirdly, the search for themes began by identifying
key topics that were emerging (for example, responsibility and difficult times)
(Appendix 3). Fourthly, five themes were identified from the key topics (for example,
seeking help can be difficult). The themes were reviewed in conjunction with the
research supervisor and in peer supervision groups. The fifth stage involved themes
being defined and named with the aid of thematic maps (Appendix 4). During this
stage one theme (changes to relationship) was compressed into a broader theme
(dementia has changed both of our lives) as this theme was able to capture the change
in the relationship. The sixth stage is the production of the report.
A qualitative design requires the researcher to be reflexive and consider how their
own experiences and assumptions may influence the interpretation of data (Willig
2013). A reflective diary was used throughout the research process (Appendix 5) as an
attempt to capture my own experiences and assumptions regarding caregiving, gender
and ethnicity in dementia and to consider how these may have influenced my
interpretation of the data (Willig 2013). A peer supervision group was also used to
reflect on my coding and identification of themes to try and recognise any biases.
Additionally, following data analysis a selection of the transcripts were reviewed with
the research supervisor to identify any themes that could have been mis-interpreted.
During this process, Yardley’s (2000) principles and checklist was also utilized to
check for credibility of the research (Appendix 6). For example, the meaning of
participants experiences was considered in detail with the supervisor along with an in-
depth analysis of the transcripts, and transparency was used throughout the process
(Appendix 2 and 3).
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Recruitment
Participants were recruited from one local dementia service. When individuals are
assessed in the service (service users, caregivers, families) they are asked if they
would be willing to be contacted in the future to take part in research. If they agree to
be contacted, their contact details and demographic information are stored on a
research register. Potential participants were identified from information held on the
research register by the lead researcher.
Participants were contacted by the lead researcher via an information sheet in the post
(Appendix 7) and invited to contact the lead researcher, using the contact details
provided, if they wanted to take part. If the participant agreed to take part in the
research an interview was arranged at a mutually convenient time.
When there was no response from the posted information within a two-week
timeframe, the lead researcher attempted to contact the potential participant via
telephone to ask if they have received the information and would like to take part (see
Appendix 8 for breakdown of participant responses). Recruitment took place between
June 2018 and January 2019.
Participants
The research aimed to recruit eight to fifteen participants based on previous
qualitative studies in this area which have used thematic analysis (Johl, Patterson and
Pearson 2016).
The inclusion criteria were; aged 18 plus, male caregiver to a female partner with
dementia, British Indian ethnicity, provide at least one hour of care a day and to be
fluent in English. Due to limited financial resources, participants who could not speak
fluent English would have been excluded from the study (although there were no
17
participants who could not speak fluent English). There were no financial incentives
for taking part however travel to and from the interview site, a nearby hospital, was
reimbursed.
The sample consisted of six males with an age range of 70 to 89 years. All
participants described their ethnicity as British Indian (see Table 1); participants were
born in India and relocated to the UK during their lifetime. Participants were living in
an outer London borough. Demographic information was collected via a questionnaire
(Appendix 9) prior to the start of the interview.
Table 1: Participant demographics
Age
70 - 79 3
80 - 89 3
Ethnicity
British Indian 6
A seventh interview took place, however the data was excluded from the research as
the participant identified himself as being of Middle Eastern ethnicity. The participant
was contacted to take part in the research as his ethnicity was recorded on the research
register as Indian. It was prior to the interview that the participant informed the
researcher that he identified as being Middle Eastern. The interview went ahead
despite this, although it was agreed with the research supervisor following the
interview that his data would be excluded as the focus for this research would be on
British Indian caregivers.
Interview schedule
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A semi structured interview schedule was devised in conjunction with the research
supervisor and was based on the literature in this field (Appendix 10). The interview
schedule contained ten questions which was shared with participants in advance. The
initial questions were designed to be broad to enable participants to speak about their
caregiving role in detail. Follow up questions were asked to encourage further detail
or to clarify. All interviews took place face to face.
A pilot interview was completed with a familial caregiver who was of British Indian
ethnicity. The benefits of conducting a pilot interview include checking for clarity and
flow of questions, length of interview, the effectiveness of audio recording and to
obtain feedback from the interviewee (Griffee 2005). No revisions were made as
feedback suggested there were an appropriate amount of questions which were clear.
Interviews lasted between 40 – 64 minutes (average 49 minutes). Each interview was
digitally recorded and transcribed verbatim by a professional transcriber, for which
the participants had given consent.
Ethical considerations
A favourable ethical opinion was given by NHS ethics (Appendix 11) and the Health
Research Authority (HRA; Appendix 12). The ethics application was supported by the
Research Integrity and Governance Office (RIGO) at the University of Surrey. The
research was based within an NHS trust and their Research and Development (R&D)
department also provided clearance for the research (Appendix 13). A letter of access
for research purposes was also gained from the trust (Appendix 14).
Participants who agreed to be interviewed provided written consent (Appendix 15)
and were informed that they could withdraw from the interview at any time.
Participants were also informed that they could withdraw their interview data up to
19
two weeks following the interview, after which it would not be possible due to the
transcription of data (BPS 2014). Interviews were conducted in a clinical space within
the trust; this allowed for confidentiality and privacy.
Several ethical considerations were addressed (Appendix 16) in line with the BPS
code of human research ethics (2014). This included the consideration of discussing
distressing topics, confidentiality and safeguarding. Signposting information was
supplied at the end of the interviews (Appendix 7) which highlighted several
organisations and places of support for participants.
Findings
The research aimed to explore how male British Indian caregivers experience
providing care to a partner with dementia. Three key themes were identified;
Dementia has changed both of our lives, Seeking help can be difficult and
Becoming a familial caregiver.
1.0 Dementia has changed both of our lives
This theme represents how dementia not only impacts the person living with the
disease but also those around them. The participants all spoke about changes to their
lives and to their relationships as a result of their wife being diagnosed with dementia.
1.1 The loss of hobbies and interests for the caregiver
Many participants spoke about the sacrifices they have made to be a caregiver for
their partner. Participants described a reduction or end to their hobbies and interests,
including their social lives. For some participants they reflected on the impact of not
being able to travel or go on holidays:
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“So, naturally it affects you, no holidays, you can't go. It is a part
of life. People were at least once or twice a year if you go on
holidays, it broadens your outlook, you feel good. But that has
restricted my activities.” Participant 1
“So it was getting harder and harder. 2013 was the last trip we
went together. The last trip. After that, we've never been out, and
neither have I been on holiday.” Participant 3
Participants acknowledged the positive impact of travel and holidays and it is
suggested that by not being able to experience this anymore it may be impacting
negatively on their wellbeing. Participant 1 recognised the barriers to being able to
have a social life, explaining that as the main caregiver you need to plan to have an
alternative caregiver available if you want to access the community or social activities.
“Social life before, we used to go to friends, to restaurants for
dinner. But that is also restricted. I can go only on the weekend,
when my daughter is there.” Participant 1
For Participant 1, he relies on his daughter to be available to provide care so that he
can have time to himself. This suggests that without his daughter’s support, he would
not be able to have a break from his caregiver responsibilities. This highlights the
importance of wider family support for this participant.
“I used to go in the park every morning… we usually had good
fun over there for an hour and a half and walk around and good
relaxation for a day…It stopped now, because I can’t leave her
alone here.” Participant 5
21
There appears to be a sense of restriction and responsibility when participants speak
about their caregiving role. Participants recognised that they cannot leave their partner
alone as they are dependent on them in many ways. This may suggest a feeling of
being trapped whilst being a spousal caregiver.
One participant summarises the changes he feels from becoming a spousal caregiver:
“But for the last few years I am not using anything. I can’t go. So
my outing is stopped. Finished now. I can’t go anywhere. Not
even here, because there’s nobody to look after her, I can’t go
even library or anywhere, wherever I want to go.
I used to go to the gurdwara, Sikh temple. But I can’t take her
over there; she makes too much noise there! (Laughs) So that’s
also stopped. So my outing going is stopped totally now.”
Participant 5
The participant reflects on the drastic changes to his social life and religious activities.
The participant is now prevented from his religious observance at the temple which is
considered an important community experience. This means that he could be excluded
from potential forms of support and social contact and therefore could feel socially
isolated.
1.2 From intimacy to caring
When an individual in the relationship is diagnosed with dementia, couples have the
challenge of maintaining a mutual relationship whilst also adapting to a new role of a
caregiver. One participant felt that he had transitioned from a husband to a best friend,
22
yet they have been able to adapt to this, just like they have adapted to other changes
during their married life:
“It’s not a study of husband anymore, it’s a best friend. She’s
been with me all this long and we always have some sort of
difference… but that won’t be, turn around and walk away.”
Participant 4
The quote appears to highlight a sense of commitment to the changing relationship.
Participants also spoke about the change in intimacy since their wife had been
diagnosed with dementia:
“My relationship with the wife is there is no married life. There's
no, you understand what I mean? There's no married life... there's
no sex, and no married life at all. All finished.” Participant 1
Participant 1 uses loss of sexual intimacy to underline the fundamental change to the
nature of his marriage, once a sexual relationship has ended then the married life has
also ended.
Other participants reminisced about their partners and their relationship through the
years prior to dementia:
“It's just that I miss her. We have been very close. 49 years we
have been together. So it's not easy. It's hard. She has been a
wonderful wife, mother, and a grandmother. She cared for the
first two children… and she was wonderful. She was doing
everything. Running the house, finances, driving the kids to
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school… We were so happy until this came. Shattered our lives.”
Participant 3
Again there is a feeling of loss in the quote with the participant discussing how much
he misses his wife and creates an image of dementia as a thief of happiness in the
relationship.
“…and I got married with this beautiful girl. She was 16 then,
very beautiful. I was 19, vigorous, full of life and we had a very
good time, we had a very good time. 66 years you know.”
Participant 6
Participants appear to speak positively about a rewarding relationship prior to
dementia; they speak in past tense about the good life they had, suggesting they feel an
aspect of their relationship has been lost and will not be found again.
However, one participant felt strongly that he maintains the husband and wife
relationship despite the negative impact that dementia is having on their relationship.
He reminds himself that they are husband and wife rather than caregiver and patient.
“I still feel that we are wife and husband. Maybe, maybe when I
get angry and frustrated, sometimes a flash comes in, ‘What’s
happening to me?’ I should have been resting, retired, and I
should be going out on holidays... No, I never think that I am a
carer and she is a patient. No. No.” Participant 5
As a caregiver there are many tasks that an individual must take on which had
previously not been a part of their intimate relationship. One of the major sources of
significant caregiver stress in this research was related to toileting issues, especially
24
incontinence. Participants spoke about managing personal care and the difficulties
associated with this.
“I found it so difficult. I had to do her personal hygiene, give her
a shower. It was so hard to do that” Participant 3
Participants did not say explicitly why these tasks were difficult but there was a sense
of disgust associated with incontinence and soiling:
“The worst experience, it was her incontinence. Stools and the
bed and floor. That one I had a very bad experience.” Participant
3
The severity of the incident being described as the ‘worst experience’ suggests that
dealing with incontinence for this participant may be the most challenging aspect of
providing care.
“…I take to the toilet. Okay, she wants to go it, but over there she
forgets what to do… And in the end, does everything in the pants.
So these are the problems I am facing now.” Participant 5
There is also an element of role change with incontinence as the male spouse is having
to take on a role that their wife could previously manage themselves. This new role
involves many new tasks such as monitoring urination and defecation, prompting their
wife to use the toilet, helping with going to the toilet and fitting any incontinence pads.
1.3 Role reversal
This subtheme recognises the changes to roles within the husband and wife
relationship. Many of the caregivers felt that their wives had previously dealt with the
household chores and now their wives were losing or had lost the skills to be able to
25
continue with this. Therefore, the caregivers had to learn new skills to complete
certain chores.
“She had a lot of cooking difficulties, leaving water or gas
open… That was quite heavy on my mind because I said now the
home is at risk. So I stopped her doing all the cooking and all
that. She wasn't really being able to cook so I had to take over the
cooking as well.” Participant 3
There appears to be an ownership of chores due to the risk associated with his wife’s
decline in skills. One participant spoke about the impact of doing these chores on his
sleep:
“I could do the shopping and cooking and all that. Because I was
finding it very difficult. I had never done that. It was always done
by her. All the paperwork, all the finances, looking into all that. It
took a lot of my time. I could hardly get much sleep. Even when I
was sleeping, I was thinking what I've got to do.” Participant 3
Some participants discussed the learning process involved when taking on new chores
and recognised the amount of work that their wife had been doing:
“She was doing everything. I was not doing nothing. She was a
very good cook and very expert and very fast. Everybody in the
family was happy.” Participant 5
The participants also spoke about how they had adjusted to this role and were now
doing ‘everything’:
26
“I automatically do everything…I do most of the housework. I
bring in a housekeeper now and again, it’s just one of those
things.” Participant 4
“Everything, I have to do it, because I think she can’t do it
properly” Participant 5
Participants spoke about the emotional distress associated with their wife losing
certain skills.
“It is very stressful, very stressful, because she is not a normal
person. She is always walking, talking rubbish things…But
sometimes you get a bit fed up, frustrated listening things which
are meaningless.” Participant 1
“She wakes up and she keeps on saying ridiculous things, which
is not appropriate at all.” Participant 6
The lack of meaningful communication appears to evoke several emotional
responses in the spousal caregivers, such as irritation and stress. It seems that
dementia has removed the spouse’s ability to effectively communicate with their
partner and this is upsetting as they are likely to experience the loss of a confidante
who they were previously able to share and discuss important topics with.
Participants also spoke about their wife’s decline in memory and how this impacts
emotionally on the caregiver:
“…since she has got dementia, she says it’s not her house, it hurts
me. She has done so much, painting and really a good time, but
27
now she can’t do anything and she forgets. That is painful for me.
That is painful.” Participant 6
In this quote, it seems that the house symbolises more than the physical bricks, but the
home that they have built together and the memories from the relationship prior to
dementia. It appears that the loss of the memories and his wife’s skills and hobbies is
particularly hard for the caregiver to come to terms with, possibly highlighting that he
is grieving for the loss of this aspect of his wife.
2.0 Seeking help can be difficult
This theme captures the range of experiences that caregivers have had when accessing
support from either formal services or support from other family members. The
participants in this study had been involved with services to some extent for their
partner to receive a diagnosis. However, participants felt they had little support.
2.1 Services are a lifeline but far from perfect
All participants recognised dementia as an illness for which they encouraged their
wife to visit the GP. Participants also spoke about the need to access support from
services to help them to fulfil their caregiver role. For some people, this support was
considered a lifeline.
“I would have been a wreck right now [without support]. I don't
think I would have existed. It would have been impossible.”
Participant 3
28
Services were acknowledged as being able to help with a range of activities within the
home:
“Cooking, before she [carer] comes, she rings me what else I can
bring, she’s a very helpful girl. I’m quite satisfied with that; I
don’t care about the £112 a week” Participant 6
However, participants also spoke about the difficulties in accessing services:
“I can’t push her [in a wheelchair], I’m blind, but they [services]
never realise this. They never come. Seldom they come, very,
very, what shall I say? They don’t care. I know they are busy, I
know they are busy and I don’t take silly advantages, being
Parkinson’s disease wife and all that but when she’s very, very ill,
then I need to call them, to come and have a look at her. Then
they come.” Participant 6
The participant suggests that whilst he does wish to access services, there are
considerable barriers. In the quote, the participant expresses dissatisfaction with the
service not being able to accommodate the additional needs of his wife and himself
which could understandably cause feelings of frustration.
One participant also spoke about not accessing services until he could no longer
manage as he did not want anyone interfering with his way of providing care:
“So, still I don’t want anybody to interfere my way, because I do
my way. But I can’t do it. One day, I have to engage a person to
do it.” Participant 5
29
We are provided with some insight into why participants may be reluctant to use
services or to avoid this for as long as possible. There appears to be a sense of wanting
to remain in control of his wife’s care for as long as possible, perhaps feeling that ‘his
way’ is the most appropriate or best for his wife, despite recognising that at some
point he will require the assistance of services.
Participants also spoke about the skill of paid caregivers:
“Even the carer that come over to the house, they are not that
good. I found myself better than them, although I never had any
training. I read on the internet and this and that. Came to know
about everything and I managed. I can praise myself for being a
better carer.” Participant 3
For this participant, it appears that he is taking control of his situation and has taught
himself the skills needed to be an effective caregiver for his wife. As he perceives the
skills of paid caregivers to be poor he is likely to distrust services, which in turn can
impact on his use of services in the future.
2.2 It’s hard to ask family for help when everyone has their own problems
This subtheme captures the views of participants that asking family for help is
difficult as all families and individuals have their own responsibilities and “they’ve
got own problems” Participant 1.
“This is a very, very personal matter and everybody has got their
own problems. Some people have children problems, the family
problem, financial problems. So, it is no point repeating again and
again to people or friends who come to see you.” Participant 1
30
“Because these days, I don’t know if you may know, but there is
not a lot of help you can get from the family, because they have
got their own things to do. You can’t force them to come over
here and sit here with us and talk all the time. They have got their
own things to do. They have got their own family matters. So I
never expect much from my family.” Participant 5
Whilst family can be a support for many, it appears that male spousal caregivers rely
on themselves to carry the brunt of the caregiver tasks as they do not expect their
family to help them. This may provide insight into possible cultural beliefs around
spousal caregiving.
Participants spoke about the range of responsibilities that family members have which
prevent them for asking for support:
“…the family won't be there because they've got to work... Like
my daughter-in-law has got the school run.” Participant 3
One participant spoke about wanting to manage for as long as he could without
support from others, possibly not wanting to burden his children when they have their
“own families”.
“It’s difficult to ask your children to come in and help when you
have really helped them all the time, although they’re now
earners, grown up, they’ve got their own families, it’s still, for
me, it’s very difficult. I’d much rather deal with it myself, get my
body fixed one way or another and look after my own affairs as
long as I can.” Participant 4
31
Participant 4 acknowledges a concept of role reversal in the parent-child relationship.
As a father who has raised his children and provided help he is now in a position
where he needs to ask his children for help. However he recognises this as being
difficult and therefore is taking control and responsibility, despite the impact it may
have on his physical health.
Participants also stressed that even if they wanted to ask family for support, their
family members no longer live close by, creating a sense of isolation in providing
care:
“Now, all of them, even my younger brothers daughters, they are
there [abroad]. My younger brother is there, my elder brother is
there, his son is there, his daughters are there. The whole family is
in Canada. Now, they all are working. Nobody can [help], we are
all alone.” Participant 6
When family members were providing support, participants felt appreciative given
how busy their family are:
“And so, on the weekend my daughter, she comes Friday. And
she helps us a lot, Saturday and Sunday in cooking, cleaning and
that is a great help to me. But then, five days she is busy with her
surgery.” Participant 1
This relays a sense that it is ultimately the husband’s responsibility to provide care for
their partners and whilst they are appreciative of support from other family members,
they do not necessarily expect it.
3.0 Becoming a familial caregiver
32
This theme represents the journey that the caregiver embarks on when they become a
caregiver to their partner.
3.1 I need to look after myself, to be able to look after her
Participants discussed the importance of looking after themselves, both physically and
emotionally, to provide care to their partners.
“They also say, ‘Take care of yourself,’ otherwise if you go first,
she will be in trouble.” Participant 6
The participant hints at the sole responsibility of caregiving and he is aware that he
needs to be well in order to meet the demanding needs of being a caregiver to his
spouse.
Participants felt that one way to look after themselves, is to have some time for
themselves to re-energise and offload:
“So, at least I get some time to myself. That's very important as
well, otherwise, my life is finished.” Participant 1
Yet, for some participants, this was not something they felt possible:
“I wish that I could have more time to myself, being my age, how
long am I going to live? I should enjoy my life, my retired life.
But unfortunately, with the present situation, it is not possible. I
wish I could have more time to myself, or she was better I could
take her too, as well. But unfortunately, I'm tied up and I cannot
devote more time to myself.” Participant 1
33
In this quote, there appears to be a wish for an alternative life and for different
circumstances; a life without dementia. However, this is shortly followed by an
acceptance that it is not possible. This may represent a dilemma that is faced by
spousal caregivers especially.
3.2 Caring has its challenges but I manage
Participants acknowledged that caring has many challenges, yet there was an
overriding message of caregivers ‘manage’ despite the challenges.
“Wherever we used to go [outdoors], I used to have a hard time
because the first thing she wanted was a toilet nearby. So, that
was difficult for me but I managed it.” Participant 3
“…but in the end then I think, she is also feel suffering. She is
like me, because we are partner. She is suffering, if I am suffering
with her. Okay, we should manage it.” Participant 5
There appears to be a journey that caregivers have gone through, acknowledging that
at first things were difficult but with time comes acceptance and they are able to
manage, both practically and emotionally. Participant 5 also hints at a shared sense of
identity with his spouse, which may help him to manage the difficult times as he views
them as being in it together.
“Well, it’s challenging, but then life is a challenge. If you don’t
get on with it, then you just get bogged in and I don’t think it’s
right.” Participant 4
Participant 4 appears to have a pro-active outlook on the situation, suggesting that this
may be an effective coping strategy in providing care to his partner.
34
Participants also spoke about the sacrifices they need to make in order to ‘manage’:
“At the moment I push myself to the limit and get things sorted.”
Participant 3
A sense of pride was conveyed in how the caregiver can manage and meet the needs
of his wife by doing all that he can. This may also reflect an aspect of masculinity by
showing that he is able to take care of his wife.
3.3 Caring is my responsibility
This subtheme encapsulates the views of participants that as a husband it is their
responsibility to provide care for their partner. Whilst participants spoke about the
mixed feelings that come with being a caregiver, there was an overriding sense of
wanting to provide care for their wife now they find themselves in this position.
“I think, as the husband, it is my responsibility to look after her”
Participant 4
For some participants, they view the caregiver role as their destiny and something that
they need to adapt to, accept and manage. However, there also appears to be an
element of lack of choice in the situation:
“…being a husband, I am very close to her, apart from me,
myself, there's nobody else. So, whether I feel frustrated, whether
I feel tired, I have to do. There's no other way to get out of this
situation... I cannot escape from this situation.” Participant 1
For one participant, he spoke about the role of social services in giving
him the caring responsibility:
35
“when the Social Service came in, they just did the assessment
and thought that I can look after her…They put me responsible to
do it. They made me carer. I didn’t ask them. They did it…
(Laughs) So I accepted it, because I can take her care better than
anybody else.” Participant 5
It was also felt that if the husband did not accept the caring role, it could potentially
have consequences for others in the family:
“… if I don't do my duty, my daughters will be affected, they will
be worried kind of thing. I kept on doing, just like focusing on
things…” Participant 4
Participants felt they owed it to their wives to provide care as their wife had provided
care to them throughout their relationship.
“…she has done so much for me when she was young and she
was, we had a very beautiful relationship.” Participant 5
Another participant shares the same sentiment:
“This is what is happening in her life, but I love her and I’ll keep
on doing it, because she has done so much for me in the past.”
Participant 6
There appears to be a commitment to providing care, not simply for duty, but for a
demonstration of how much they appreciate the care their partners have provided
throughout the relationship. This hints at a concept of ‘paying back’ their wife for the
love they have shown during the relationship.
36
Linked to this, participants described how the caring role felt like a natural
progression:
“I don't have to do. It just comes naturally. When I go and visit
her, because I don't want to repeat the vows, in sickness and in
health and until death do us part, but that is there. Now really
because of the vow but it's coming with me and it comes
automatically. They all keep telling me, "You're a wonderful
husband." I said, "I'm only doing my job. I don't understand why
people say that.” Participant 3
“Well, I’m her best friend, so it’s natural that I look after her and I
know that she is in trouble and I’ve always looked after her. For
me it’s just go in and do it” Participant 2
Yet, one participant linked caregiving to a cultural responsibility:
“Yeah, this is being a Hindu, and in our society, we don't believe
in divorce, and we think that it is my duty to look after her. This
is in our culture. Yeah, whatever happens, we have to do that… If
I don't care her, then naturally, her relatives or my relatives they
will feel bad. That I am shirking my responsibility, I am not
helping her.” Participant 1
Participant 1 suggests that he feels obligated to provide care due to his culture and
religious beliefs. This view appears to differ from the other participants who discuss
caregiving as a responsibility born out of the marriage and a natural extension of the
relationship.
37
Discussion
Summary of findings
This study has aimed to explore how male British Indian caregivers experience
providing care to a partner with dementia. Three main themes emerged from the
analysis; Dementia has changed both of our lives, Seeking help can be difficult
and Becoming a familial caregiver. Whilst the themes may not be exclusive to male
British Indian caregivers, the findings provide an insight into the experiences, needs
and concerns for participants in this research whilst hinting at cultural nuances.
Exploration of themes
Dementia has changed both of our lives
The findings suggest that dementia not only impacts the person with the diagnosis but
those around them. Many participants focused on the sacrifices they have made to be
a caregiver for their partner, similar to previous research with British Indian familial
caregivers (Parveen, Morrison and Robinson 2011). However the findings differ to
Parveen, Morrison and Robinson (2011) in that British Indian participants in the
current study discussed sacrifices related to personal changes (e.g. lack of time for
self) whereas in their study British Indian participants discussed sacrifices in relation
to not being able to provide care for others in the family. Yet, the samples did differ
with the current research focusing on spousal caregivers only.
Participants described a reduction to their social activities, which is a significant
sacrifice that is spoken about in the literature across all ethnic groups. A lack of social
inclusion can have a detrimental impact on a caregiver’s lifestyle and wellbeing
(Almberg et al. 1997; Zarit and Whitlach 1992) and can increase caregiver burden
38
(Ostwald et al. 1999). This may be especially relevant to people from ethnic minority
groups where social connections can be crucial to ensure a sense of belonging
(Mackenzie 2006). For example, in this study participants experienced not being able
to partake in religious practices such as attending the temple which has a religious and
social element.
Similar to findings in the current research, difficulties with going on holiday and
restrictions to social life are cited as some of the most frequently reported problems in
spouses who provide care to partners, regardless of ethnicity (Thommessen et al.
2002). Research has highlighted several barriers ranging from accessibility, to the
caregiver’s perception of whether the person with dementia could engage with the
activity or holiday. These changes can be restrictive and life changing (Innes, Page
and Cutler 2016).
Participants also spoke about changes to the relationship which has a bearing on the
couple’s identity with considerable changes to the roles held within the relationship.
Some participants felt that they were taking on roles likened to patient and caregiver
(Rolland 1994) which can increase a sense of inequality of power within the marital
relationship (Rolland 1998). Yet, participant 5 felt that despite the change in roles, he
does not think of himself as a caregiver and his wife as a patient. This suggests that
whilst caregivers may have different responses, it still reflects a fundamental change
to the nature of their most significant relationships.
Along with changes in the relationship, it has been suggested that caregivers who
experience a loss of intimacy within the relationship report more depressive symptoms
(Morris, Morris and Britton 1988). For example, participant 1 spoke about the loss of
sexual intimacy and how this was impacting on him. The limited research on the
39
impact of dementia on sexual relationships suggests that an ethical issue may arise, for
example husbands are not sure if their partner is consenting to sexual activity and
therefore can experience feelings of guilt when initiating sexual contact (Baikie 2002).
One of the major sources of significant caregiver stress in the current research was
related to toileting issues, especially incontinence. In their research, Gallagher and
Pierce (2002) report that caregivers can experience frustration, depression, sadness
and embarrassment with their partner’s incontinence. It is thought that being a male
can make this process feel unfamiliar (Cassells and Watt 2003) as toileting and
personal care tasks are typically tended to by females (Baker and Robertson 2008).
This can be supported with the findings in the current research. Whilst participants did
not suggest that incontinence could lead to participants feeling unable to manage,
incontinence can be one of the factors associated with the decision to move a loved
one to a residential care home (Drennan, Cole and Iliffe 2011). It is therefore
unsurprising that participants discussed incontinence as being one of the ‘worst
experiences’.
Dementia also changed the lives of the caregivers with participants speaking in detail
about the increase in their household tasks since becoming a caregiver, which has been
discussed in previous research (Kramer and Lambert 1999). It has been suggested that
a change in roles regarding cooking and meal preparation are usually more observable
for male caregivers as they tend to be roles performed by females on a regular basis
(Kirsi, Hervonen and Jylhä 2004). Studies have recognised that cooking is a household
chore that is particularly challenging for males when they first enter a caregiver role
(Atta-Konadu, Keller and Daly 2011; Russell 2007). These were tasks that male
caregivers had previously ‘taken for granted’ (Russel 2007).
40
Seeking help can be difficult
Caregivers in this study recognised dementia as a medical condition for which their
partner needed to seek professional support in order to receive a diagnosis. This
contradicts previous research which suggested that South Asian caregivers may lack
knowledge or understanding of signs and symptoms of dementia (Mukadam et al.
2011; Jolley et al. 2009).
Yet, participants described not wanting to access support from services until reaching
crisis point. This is consistent with previous findings with ethnic minority elders,
including Indian familial caregivers (Mukadam et al. 2011). Brodaty et al. (2005)
suggest that sometimes these caregivers do not consider themselves to be a carer, as
they can view caregiving as part of their relationship. This has been supported in the
current research. Furthermore, this could be linked to research that BME caregivers
are more likely to deal with matters privately until they can no longer manage
(Mukadam et al. 2011).
When participants in this study wanted to access support, they encountered a range of
difficulties. Research highlights that the characteristics of the service can be a
considerable barrier (Brodaty et al. 2005). For example, services that are not open at
convenient hours or when there is a shortage of appointments. This was shown to
apply to the caregivers in this research and it has been linked to the highest levels of
caregiver burden and poor health (Brodaty et al. 2005).
When there are difficulties in accessing services or distrust with professional
caregivers, this led to participants in the current research learning to manage the
caregiver role themselves and teaching themselves the necessary skills. Carpentier
41
and Grenier (2012) suggest that trust between the informal caregiver and services is
critical for there to be a link between the two.
Alongside accessing professional services, research suggests that family relationships
play a significant role in supporting the caregiving experience and influence how a
caregiver responds to difficult behaviour displayed by someone with dementia
(Nichols et al. 2008). Yet, in the current study, asking family members for help was
perceived to be difficult as caregivers did not want to burden family members who
already ‘have their own problems’. This has been identified as a common worry of
older adults who do not want to complicate the lives of their busy children (Cahill et
al. 2009) and it has been discussed in the literature as an area that can cause
discomfort for both parent and child (Nichols et al. 2008). It is therefore unsurprising
that the situation for the participants in this research is avoided. It also does not
conform with assumptions that Asian families look after their own via extended
family (St. John 2004).
Becoming a familial caregiver
As with previous research, caregiving in male British Indian participants was
underpinned by a complex range of emotions. Caregivers recognised the need to look
after their own physical and mental health in order to be provide care. Research
suggests that approximately 40 per cent of family caregivers within dementia have
clinically significant depression or anxiety (Mahoney et al. 2005). Family caregivers
are also likely to experience increased stress and negative effects on their health and
wellbeing (Brodaty et al. 2005). This was evident in the current research with
participants describing a range of negative consequences of being a caregiver.
42
In the findings, participants spoke about the loss of their wife’s skills. Anticipatory
grief, the feeling of grief or loss before physical death, has been discussed in relation
to dementia and findings suggest that anticipatory grief can be experienced in the
same intensity as death-related grief (Meuser and Marwit 2001). The experience of
loss is something that is likely to be shared by the wife and husband (Robinson, Clare
and Evans 2005). From the perspective of the caregiver, he may experience the loss of
his confidante, amongst many other losses (Dempsey and Baago 1998). Participants
in the current research discussed the difficulties in observing their partners
communication skills deteriorating.
Participants also reflected on the past and spoke with pleasure about their relationship
before dementia. Reminiscing on the past has been linked to a process of adjustment
by reflecting on the relationship, rather than on the current difficulties (Robinson,
Clare and Evans 2005). As part of this process, acknowledging loss is an important
aspect as well as recognising feelings that coincide with the loss, such as sadness and
frustration (Robinson, Clare and Evans 2005). This has been described as a cyclical
process of turning to face the situation, possibly explained by an attempt to maintain
and restore self-esteem (Clare 2003).
In the current study the caregiver role was understood as being an act of responsibility
that was born out of love and respect from the relationship. In previous research, there
has been a suggestion that South Asian caregivers tend to view their caregiving role as
an extension of their previous caring responsibilities (Lawrence et al. 2008). It has
been suggested that experiences of a good marital relationship prior to dementia
supports the idea of long-term equity of care within the relationship (Baikie 2002). In
the current research, it was found that there was a sense of ‘paying back’ their partner
43
for the care they have provided to them in the past. Yet, one participant spoke about
the caregiver role as a cultural duty which has also been identified in British Asian
familial caregivers (Parveen, Morrison and Robinson 2011).
Limitations
Despite being a relatively small sample, the findings can build on the growing
evidence base for male British Indian spousal caregivers. However, it is important to
recognise several limitations.
Firstly, as qualitative research, this research does not seek to provide generalisable
findings but rather to focus on the detail of experiences and understandings from the
six participants (Willig 2013). It is acknowledged that when studying BME groups,
there is considerable variation within cultures (Vertovec 2007) and so the findings are
not intended to represent male British Indian caregivers in general. Secondly, the
participants in this research are caregivers who had accessed a dementia service (for
example, all participants had attended the dementia service for their partners to be
diagnosed with dementia). Therefore, the findings from this research are not intended
to be generalisable to the experiences of caregivers who have not accessed services.
Due to limited financial resources for the research, participants who could not speak
fluent English would have been excluded from the study; this may bias the data
collected and findings reported.
During the reflexive process of this research, the differences between the researcher
and the participants were considered in detail. Whilst all participants were males, aged
over 70 and from a British Indian background, the researcher is female, aged under 30
and identifies as White British. It was considered whether this may impact on the
interview content. It was hoped that the researcher maintaining a curious approach
44
and taking a ‘not knowing’ stance would allow the participants to feel able to share
personal details about providing care. It is positive that participants described a range
of caregiver experiences, positive and negative, including intimacy, suggesting that
participants felt at ease to discuss personal topics. Additionally, it has been reported
that sometimes discussing taboo subjects with an individual from the same ethnic
background can cause feelings of shame especially where the personal experiences
discussed deviate from a cultural norm (Adamson and Donovan 2005).
Implications for clinical practice
The findings suggest that male British Indian caregivers are likely to have made
significant sacrifices to be a caregiver and as a result have reduced social activities
which can create feelings of social isolation. This is complicated further by
participants being reluctant to access services for support (such as respite) until they
felt they were in crisis. For participants in the current study this did not appear to be
related to stigma, but due to a desire to remain in control for as long as possible.
Therefore, clinicians should be aware that this population of caregivers may be
experiencing caregiver burden, stress and isolation when they first present to services.
It would be important for the options regarding available support and the importance
of respite to be discussed at post diagnostic clinics or alternatively during outreach
work with British Indian communities. This may encourage support to be sought at an
earlier stage.
Participants in the study acknowledged the challenges related to managing their
spouse’s incontinence, with this being described as one of the main challenges of
being a caregiver. Given this, it is unsurprising that incontinence can be a factor
associated with moving a loved one to a care home (Drennan, Cole and Iliffe 2011).
45
One participant who had accessed services for support with incontinence described
this as being a vital lifeline for helping him to manage this task. He thanked the
incontinence specialist for recommending equipment such as waterproof sheets,
mattresses and incontinence pads. This highlights the importance in professionals
asking about this issue and if needed providing practical advice and suggestions to
help reduce the burden in managing this task.
Furthermore, for the British Indian participants, there appeared to be a reluctance to
ask wider family, including children, for support. As a practitioner, it is important to
be aware that whilst there may be a wider family present there may be little support
available from this network. It will be important for practitioners to ask about the
involvement of family in sharing caregiver tasks to monitor for caregiver burden and
to try and alleviate this where possible e.g. the use of support groups, respite or
psychological interventions for caregivers.
The findings also suggest that services cannot assume experiences based on ethnicity
alone; there are a range of individual factors that need to be considered. For example,
whilst findings from the current research highlight caregiver experiences for British
Indian caregivers, there appears to be similarities across ethnicities and experiences
described by participants in the current research are not exclusive to BME groups.
This is useful for researchers and clinicians to be aware of. As suggested by Botsford,
Clarke and Gibb (2012) services and practitioners need to carefully balance an
appreciation of cultural factors with the unique life experiences of individuals. As
recommended by Jolley et al. (2009) there is always more to learn from BME
communities in how to support their individual needs and this should be done through
ongoing revision and adaptations to services.
46
Suggestions for future research
As the research considering the BME male spousal caregiver experience is limited, it
would be worthwhile for researchers to continue exploring the male spousal
experience in other BME communities such as Pakistani or Bangladeshi caregivers.
This would enable researchers to check for similarities and differences between
different South Asian communities.
Alternatively, the participants in the current research had accessed dementia services.
It may be worthwhile for researchers to consider the experiences of male British
Indian caregivers who are not accessing services to understand more about the
barriers and delay in help seeking that has been noted in this population.
Conclusion
The study has explored how male British Indian caregivers experience providing care
to a partner with dementia. Three main themes were identified; Dementia has
changed both of our lives, Seeking help can be difficult and Becoming a familial
caregiver. The findings highlight that participants experienced a significant reduction
in social activities as a result of their caregiving responsibilities, which led to
participants experiencing feelings of social isolation. Participants recognised dementia
as a medical condition for which they sought medical advice and they did not speak of
stigma related to a diagnosis. Support from services was delayed until participants
could no longer manage themselves, yet they described the detrimental impact of this
on their emotional and physical health. When caregivers did seek support, they felt
that services were unable to meet their needs due to being inflexible and a perception
that paid carers lacked the necessary skills to look after their spouses. Male caregivers
also described not wanting to burden other family members including children with
47
caregiver tasks. For male caregivers in this study, the caregiver role was understood
as a spousal responsibility.
48
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MRP Empirical Paper Appendices
Appendix 1- Guidelines for authors
Ageing & Society
Submission Ageing and Society is an interdisciplinary and international journal devoted to the understanding of human ageing and the circumstances of older people in their social and cultural contexts. We invite original contributions that fall within this broad remit and which have empirical, theoretical, methodological or policy relevance. All submissions, regardless of category, are subject to blind peer-review. Authors are reminded of the requirement to avoid ageist and other inappropriate language and to avoid the stereotypical representation of individuals or groups.
All papers must be submitted using Manuscript Central through the Journal’s website at: http://journals.cambridge.org/aso.
All books for review should be sent to: Caroline Norrie and Kritika Samsi, Social Care Workforce Research Unit, King's College London, Strand, London, WC2R 2LS
All submissions must conform to the submission guidelines outlined below. Failure to do so may result in the submission being rejected.
Article categories Research articles Research articles must contain between 3,000 and 9,000 words, excluding the abstract and references. Most papers usually have the following sections in sequence: Title page, Abstract (200-300 words), Keywords (three to eight), Main text, Statement of ethical approval as appropriate, Statement of funding, Declaration of contribution of authors, Statement of conflict of interest, Acknowledgements, Notes, References, Correspondence address for corresponding author. However authors have the flexibility to organise the main text of article into the format that best suits the topic under consideration.
Forum articles In addition to research papers, the Journal welcomes critical/reflective commentaries on contemporary research, policy, theory or methods relevant to the Journal’s readers. These articles reflect a viewpoint of the author and they may form part of an ongoing debate. These articles should contain 2,000-5,000 words. There is no preset organisational structure.
Special issues Proposals are invited for special issues that fall within the remit of the journal. Ageing & Society especially looks for proposals that show originality and which address topical themes. Proposals which involve authors from a range of disciplines and/or countries are particularly encouraged and the special issue must demonstrate clear added value in advancing an understanding of ageing and later life that is more than
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the sum of the individual papers. Proposals should be submitted by the co-ordinating Guest Editors by email to the Editor, Christina Victor: [email protected]
Proposals are reviewed twice a year, for further information see the guidelines for special issue proposals available at:
http://journals.cambridge.org/images/fileUpload/images/A&S_Special_Issue_Proposals.pdf
It is Ageing & Society practice that all papers in special issues are subject to blind peer review, undergoing the same refereeing process as all other submissions, led by the Ageing & Society Editor and co-ordinated by the journal’s Editorial Assistant. The final decision whether to publish individual papers submitted as part of a special issues remains with the Editor.
Submission requirements Exclusive submission to Ageing & Society
Submission of the article to Ageing & Society is taken to imply that it has not been published elsewhere nor is it being considered for publication elsewhere. Authors will be required to confirm on submission of their article that the manuscript has been submitted solely to this journal and is not published, in press, or submitted elsewhere. Where the submitted manuscript is based on a working paper (or similar draft document published online), the working paper should be acknowledged and the author should include a statement with the submitted manuscript explaining how it differs from the working paper. Articles which are identical to a working paper or similar draft document published online will not be accepted for publication in Ageing & Society.
Appropriateness for Ageing Society
All submissions must fall within the remit of the journal, as described at the beginning of this document.
All manuscripts must meet the submission requirements set out in this document, closely following the instructions in the ‘Preparation of manuscripts’, ‘Citation of references’ and ‘Table and Figures’ sections below.
Authors are requested to bear in mind the multi-disciplinary and international nature of the readership when writing their contribution. Care must be taken to draw out the implications of the analysis for readers in other fields, other countries, and other disciplines. Papers that report empirical findings must detail the research methodology.
The stereotypical presentation of individuals or social groupings, including the use of ageist language, must be avoided.
Submission documents
All submissions should include:
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A copy of the complete text of the manuscript, with a title page including the title of the article and the author(s)’ names, affiliations and postal and email addresses.
A copy of the complete text minus the title page, acknowledgements, and any running headers of author names, to allow blinded review.
Named authors
Papers with more than one author must designate a corresponding author. The corresponding author should be the person with full responsibility for the work and/or the conduct of the study, had access to the data, and controlled the decision to publish. The corresponding author must confirm that co-authors have read the paper and are aware of its submission. Full contact details for all co-authors should be submitted via Manuscript Central.
All named authors for an article must have made a substantial contribution to: (a) the conception and design, or analysis and interpretation of data; (b) the drafting of the article or revising it critically for important intellectual content and (c) approval of the version to be published. All these conditions must all be met. Participation solely in the acquisition of funding or the collection of data does not, of itself, justify authorship.
Peer-review process
The corresponding author should prepare (a) a complete text and (b) complete text minus the title page, acknowledgements, and any running headers of author names, to allow blinded review. References to previous papers of the authors must not be blinded, neither in the text nor in the list of references.
Papers are peer-reviewed. Authors may be asked to submit a revised version of the original paper. In any revised submission, we prefer you to indicate these revisions using track changes where appropriate. An accompanying letter from the corresponding author should outline your changes, and comments on advice that you have chosen not to accept. The corresponding author should confirm that co-authors have agreed to any changes made.
Ethical considerations
Where the paper reports original research, confirmation must be given that ethical guidelines have been met, including adherence to the legal requirements of the study country. For empirical work conducted with human subjects authors must provide evidence that the study was subject to the appropriate level of ethical review (e.g. university, hospital etc.) or provide a statement indicating that it was not required. Authors must state the full name of the body providing the favourable ethical review and reference number as appropriate.
Declaration of funding
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A declaration of sources of funding must be provided if appropriate. Authors must state the full official name of the funding body and grant numbers specified. Authors must specify what role, if any, their financial sponsors played in the design, execution, analysis and interpretation of data, or writing of the study. If they played no role this should be stated.
Copyright
Contributors of articles or reviews accepted for publication will be asked to assign copyright, on certain conditions, to Cambridge University Press.
Open Access
Please visit http://journals.cambridge.org/openaccess for information on our open access policies, compliance with major funding bodies, and guidelines on depositing your manuscript in an institutional repository.
Preparation of manuscripts All contributions (articles, reviews and all types of review articles) should be typed double-spaced with at least one-inch or two-centimetre margins throughout (including notes and the list of references).
Most research articles usually have the following sections in sequence: Title page, Abstract (200-300 words), Keywords (three to eight), Main text, Statement of ethical approval as appropriate, Statement of funding, Declaration of contribution of authors, Statement of conflict of interest, Acknowledgements, Notes, References, Correspondence address for corresponding author.
The title page should give the title of the article and the author(s)’ names, affiliations and postal and email addresses. When composing the title of your article, please give consideration to how the title would be shortened to appear as a running head in final version of the Journal.
The tables and figures should be presented one to a page in sequence at the end of the paper. Black and white photographs may be submitted where they are integral to the content of the paper. Charges apply for all colour figures that appear in the print version of the Journal (see below for further details).
Authors are asked to follow the current style conventions as closely as possible. Please consult a very recent issue of the journal. In particular, please note the following:
Use the British variants of English-language spelling, so ‘ageing’, not ‘aging’. First level headers are in bold, sentence case and left justified Second level headers are in italic (not bold), sentence case and left justified Do not number paragraphs or sections. Avoid very short (particularly one
sentence) paragraphs. Do not use bold text in the text at all. For emphasis, use italic. In the main text, the numbers one to ten should be written as words, but for
higher numbers the numerals (e.g. 11, 23, 364) should be used.
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All acronyms must be expanded on first use, even EU, USA, UK or UN, for those which are commonplace in one country are not in others.
Do not use footnotes. Endnotes are permitted for technical and information details (including arrays of test statistics) that distract from the main argument. Endnote superscripts should be placed outside, not inside a punctuation mark (so.3 not4.).
Write per cent (not %) except in illustrative brackets.
Authors, particularly those whose first language is not English, may wish to have their English-language manuscripts checked by a native speaker before submission. This is optional, but may help to ensure that the academic content of the paper is fully understood by the editor and any reviewers. We list a number of third-party services specialising in language editing and/or translation, and suggest that authors contact as appropriate:
http://journals.cambridge.org/action/stream?pageId=8728&level=2&menu=Authors&pageId=3608
Please note that the use of any of these services is voluntary, and at the author's own expense. Use of these services does not guarantee that the manuscript will be accepted for publication, nor does it restrict the author to submitting to a Cambridge published journal.
Citation of references Contributors may follow either the standard conventions: (a) in-text citation of sources (author/date system); or (b) citations in notes.
(a) In-text citation. Give author's surname, date of publication and page references (if any) in parentheses in the body of the text, e.g. (Cole 1992: 251). For references with one to three authors, all authors should be named (Black, Green and Brown 2003). For references with four or more authors, the following form is required: (Brown et al. 2003). Note that all authors must be named in the list of references, and et al. is not permitted in the list. A complete list of references cited, arranged alphabetically by authors’ surname, should be typed double-spaced at the end of the article in the form:
Balsa AI, Homer JF, Fleming MF and French MT (2008) Alcohol consumption and health among elders. The Gerontologist 48, 5, 622–636.
Bergmann MM, Rehm J, Klipstein-Grobusch K, Boeing H, Schütze M, Drogan D, Overvad K, Tjønneland A, Halkjær J, Fagherazzi G, Boutron-Ruault M-C, Clavel-Chapelon F, Teucher B, Kaaks R, Trichopoulou A, Benetou V, Trichopoulos D, Palli D, Pala V, Tumino R, Vineis P, Beulens JWJ, Redondo M-L, Duell EJ, Molina-Montes E, Navarro C, Barricarte A, Arriola L, Allen NE, Crowe FL, Tee Khaw K, Wareham N, Romaguera D, Wark PA, Romieu I, Nunes L, Riboli E and Ferrari P (2013) The association of pattern of lifetime alcohol use and cause of death in the European prospective investigation into cancer and nutrition (EPIC) study. International Journal of Epidemiology 42, 6, 1772–1790.
(b) Citation in notes. References should be given in notes, numbered consecutively through the typescript with raised numbers, and typed double-spaced at the end of the article. Full publication details in the same format as (a) should be given in the notes
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when a work is first cited; for second and subsequent citations a short form may be used.
For both styles of reference lists, please particularly note the following:
Authors are requested to minimise the citation of unpublished working and conference papers (because they are difficult for readers to acquire). Where they are cited, complete details of the title of the conference, the convening organisation, the location and the date of the presentation must be given. Papers that have been submitted to journals but on which no decision has been heard must not be cited.
Titles of Books and Journals are in Title Case and Italic. Titles of papers, articles and book chapters are in sentence case and not
italicised. Please note carefully that part or issue numbers should be given for journal
paper citations, that page ranges for book chapters should always be given and should be condensed, so 335-64 not 335-364, and S221-9 not S221-229.
Please use (eds) and (ed.) where required (no capitals, full stop after truncated ed. but not compressed eds).
Citation of Internet pages or publications that are available online Give authors, date, title, publisher (or name of host website) as for a printed publication. Then follow with … Available online at … full Internet address [Accessed date]. For example:
Belfield C, Cribb J, Hood A and Joyce R (2014) Living Standards, Poverty and Inequality in the UK: 2014. Institute for Fiscal Studies, London. Available online at http://www.ifs.org.uk/publications/7274 [Accessed 30 July 2015].
Tables and figures There should never be more than ten tables and figures in aggregate, and only in exceptional circumstances more than eight. Please do not use Boxes or Appendices. Present all illustrative material as tables or figures. Please indicate in the text where approximately the Table and Figures should appear using the device < Insert Table 1 about here > on its own line. For figures generated by Excel, please send the original file (rather than a ‘picture’ version) so that the figures can be copy-edited.
Tables and figures should be clearly laid out on separate pages, numbered consecutively, and designed to fit a printed page of 228 x 152 mm (actual text area 184 x 114 mm). Titles should be typed above the body of the table, with an initial capital only for the first word and proper names and italicised or underlined (for italics). Vertical lines should not be used and horizontal lines should be used only at the top and bottom of the table and below column headings. Authors are asked to give particular attention to the title and to column and row labels (they are often poorly selected, incomprehensible or inadequate). All multiple word labels should be in sentence case. Short titles that concentrate on the subject of the table are recommended. Technical or methodological details (such as sample size or type of statistic) should be described in the labels or in table notes. Spurious accuracy should be avoided: most statistics justify or require only one decimal place.
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Figures should also be provided on separate pages and numbered consecutively. For each figure, the caption should be below and in sentence case. Separate lists of captions are not required.
Colour figures can be submitted to Ageing & Society, but charges apply for all colour figures that appear in the print version of the journal. At the time of submission, contributors should clearly state whether their figures should appear in colour in the online version only, or whether they should appear in colour online and in the print version. There is no charge for including colour figures in the online version of the Journal but it must be clear that colour is needed to enhance the meaning of the figure, rather than simply being for aesthetic purposes. If you request colour figures in the printed version, you will be contacted by CCC-Rightslink who are acting on our behalf to collect Author Charges. Please follow their instructions in order to avoid any delay in the publication of your article.
Figures should be provided in the following formats:
For colour halftones: Tiff or Jpeg format at 300 dpi (dots per inch) at their final printing size. For line work or line work/tone: EPS format with any halftone element at 300dpi final printing size.
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Last updated 12th July 2018
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Appendix 2 – An extract with line by line coding
Participant 1
Participant 7
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Appendix 3 – An extract identifying key themes
Participant 2
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Participant 5
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Appendix 4 – Thematic mapsInitial thematic map
Responsibility
Grieving loss of my wife’s skills
Caring has its challenges but I
manage
Incontinence and soiling are difficult
to manage
I need to look after myself to being
able to look after her
Emotional impact of
being a carer
Acceptance
I look after her, because she would
look after me
Returning the favour
Caring as a responsibility
From intimacy to caring Role reversal
Changes to relationship
The loss of hobbies and
interests for the carer
Making sacrifices to be a carer
Loss of wife’s skills
Changes to lifestyle
Dementia has changed both of our
lives
Services are a lifeline but far from perfect
It’s hard to ask family for help
when everyone has their own problems
Seeking help can be
difficult
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Final thematic map
Caring is my responsibility
Caring has its challenges but I
manage
I need to look after myself to be able to
look after her
Becoming a familial
caregiver
Services are a lifeline but far from perfect
It’s hard to ask family for help when
everyone has their own problems
Seeking help can be
difficult
Role reversal
From intimacy to caring
The loss of hobbies and interests for the
carer
Dementia has changed both of our lives
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Appendix 5 – An extract from the reflective diary
August 2018I have just completed the second interview for my research. I found it quite an emotional interview – the participant became upset when reflecting on the changes in his wife’s behaviour and how her personality has changed. It left me feeling that dementia can be very cruel, especially when people have been looking forward to retirement and enjoying their later years in life.
I was also struck by the participant’s concerns and worries about finances. Before this, I hadn’t realised how much individuals have to pay themselves towards dementia care.
The participant also spoke in detail about the importance of family and how integral his wife had been to family life such as raising the children. It made me think about the emotion in the room and how the participant was talking about the loss he feels – it was something that I could also feel when he was talking to me. After the interview, I was thinking a lot about my own family and my grandparents, especially my grandpa who had dementia and my grandmother who cared for him. Whilst writing this, I am thinking about the importance of separating my own experiences from those I’m hearing about, although some similarities.
November 2018Just finished interview number five! There was a lot of discussion around the limitations to the carer’s life and the number of things that he can no longer do due to being a carer. He spoke about the expectation of being older versus the reality; life not going the way he expected. I wonder how many people feel like this with dementia?
I’ve noticed that the participants have been saying that they have not spoken in detail to anyone about their experiences before. I wonder why people have not spoken about these things before? It makes me feel quite privileged that they have volunteered to speak to me. I hope I can capture their experiences accurately in the write up – can I capture the feelings from the interview room? Anyway, I hope it is helpful for them to talk about their experiences and maybe they will be more likely to speak again in the future to get support if needed.
Now that I have done five interviews, I have really been thinking about me being a white British, female interviewer. Has that had any bearing on what they would be willing to share? Have they held anything back because of it? I’m trying to be curious and inquisitive whilst being sensitive. I’ve noticed that participants seem to enjoy talking to me about their past e.g. what jobs they did, where they have travelled, when they moved to the UK. I have found it really interesting and hope it shows that I am interested in them as individuals, not just as a research participant. I hope this is helping to overcome the obvious differences between us.
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Appendix 6 – Yardley’s (2000) principles
To ensure credibility I adhered to Yardley’s (2000) principles of quality qualitative
research:
Sensitivity to context:
The research question was developed after a substantial review of the literature prior
to the study commencing.
As this was qualitative research, reflective diaries were kept throughout the process to
ensure that the researcher was aware of their own experiences and reflections from the
interviews, as a way of being aware of prior assumptions and any biases regarding
dementia caregiving in BME populations. Quotes from the interviews are provided
throughout the research to illustrate how interpretations were made.
Commitment and rigour:
A detailed process was followed in relation to data collection and analysis in order to
fully engage with the data. The researcher took a methodical stepped approach to the
analysis with regular check ins with the research supervisor. Sections of the
transcripts and analysis were reviewed by the supervisor and discussed, before being
reanalysed. Furthermore, peer supervision was attended as a space to reflect on the
research.
Transparency and coherence:
Discussions with peers and research supervisors were held to reflect on line by line
coding and development of themes. Quotes were used throughout the findings section
to ensure transparency with data interpretation. Additionally, extracts from transcripts
and analysis and the reflective journal are included in the appendices to enhance
transparency.
Impact and importance:
This study was conducted following an identified gap in our current knowledge and
discussions with a consultant clinical psychologist working in a dementia service.
Therefore, it was agreed that research in this field would make an important
contribution to literature with regards to understanding the experiences of male BME
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spousal caregivers. It is hoped that findings will be disseminated to other
professionals in the field through publication.
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Appendix 7 - Participant information sheet
IRAS Reference Number: 236300
INFORMATION SHEET FOR PARTICIPANTS
Title of Study: Exploring the experience of male caregivers in dementia from a Black or Minority Ethnic (BME) background
My name is Kristy Rye and I am a Trainee Clinical Psychologist employed by the NHS. I am training at the University of Surrey and I would like to invite you to take part in a research project, which forms part of my doctorate. This research project is exploring the experience of being a male BME carer of someone with dementia. It is important for you to know that you should only participate if you want to; choosing not to take part will not disadvantage you in any way. Before you decide whether you want to take part, it is important for you to understand why the research is being done and what your participation will involve. Please take time to read the following information carefully and discuss it with others if you wish. Feel free to ask me if there is anything that is not clear or if you would like more information.
What is the purpose of the study?The aim of this study is to better understand the experience of being a male carer to a partner with dementia. This study is particularly interested in male caregivers who are from a Black or Ethnic (BME) group. This is because little is known about this area except that BME males are less likely to access support and help. This study will involve an interview that could last up to one hour with myself and I am interested in hearing about your experience. I will not be asking any questions about the person you are a carer for.
Why have I been invited to take part?I am inviting male BME caregivers who provide care to a partner who is living with dementia. To take part, you need to be over 18 years old and provide a minimum of one hour of care each day. I am inviting you to take part because you were seen within the XXX Service XXX in XXXX and you agreed to be contacted about future research.
Do I have to take part?Participation is voluntary and you do not have to take part. You should read this information sheet and if you have any questions you should ask the research team. You can stop participation in the study at any time, without giving a reason, by informing the researcher. However, once the data has been transcribed (two weeks following the interview), it will not be possible for it to be withdrawn. This is because the interview data will have been made anonymous and we will be unable to identify which interview data set to remove.
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What will happen to me if I take part?If you decide to take part, I will contact you to discuss any questions that you have and give you a list of the interview questions for you to read in advance. The questions will focus on your experience of being a carer e.g. what your day to day caring role involves. If you would like to go ahead with the research, we can arrange a convenient date and time for the interview to take place at the XXXXX. The interview will last up to one hour. Audio recordings will be taken of the interview. Prior to the interview, participants will need to give written consent. Reimbursement of travel expenses will be provided.
What are the possible benefits of taking part?The information we will get from the study will help to shape future research and has the potential for clinical services to learn more about how to best support male BME caregivers. Additionally, you can ask to be provided with a summary of the final report describing the main findings.
What are the disadvantages of taking part?It is possible that you may find talking about your experience upsetting or uncomfortable. If you are concerned about this, you can speak to the researcher in advance of the interview. All interview questions will be shared with you prior to taking part to help you to make this decision if you want to take part. If you are upset or feel worried following the interview, you can contact your GP or speak to a charity such as Dementia UK (0800 888 6678), Mind (0300 123 3393) or Caregivers UK (0808 808 7777).
Will my taking part be kept confidential?What is said in the interview is regarded as strictly confidential and will be held securely until the research is finished. However, should you disclose that you or someone else is at risk then the researcher may need to report this to an appropriate authority. This would usually be discussed with you first.All interview data for analysis will be anonymised. In reporting on the research findings, I will not reveal the names of any participants. Interviews will be transcribed by an external agency who have signed a confidentiality agreement.All information gathered will be held for long-term storage on University secure servers.
No identifiable data will be accessed by anyone other than me, members of the research team and authorised personal from the University and regulatory authorities for monitoring purposes.
Who has reviewed the project?This study has been given a favourable ethical opinion by the NHS Ethics Committee.
What will happen to the results of the study?I will produce a final report summarising the main findings. I also plan to disseminate the research findings through journal publication and at research conferences.
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Who should I contact for further information?If you have any questions or require more information about this study, please contact the researcher, Kristy Rye, using the following contact details: 07534397256 or [email protected]
If you wish to make a complaint or you have a concern about the study please contact Kristy Rye at [email protected] or her supervisor Dr Paul Davis at [email protected] or Mrs Mary John, Head of Department at [email protected]
Who is Handling My Data?The University of Surrey, as the sponsor, will act as the ‘Data Controller’ for this study. We will process your personal data on behalf of the controller and are responsible for looking after your information and using it properly. This information will include your name and contact details, which is regarded as ‘personal data’ and your race, ethnic origin and religion, which is regarded as a ‘special category personal data’. We will use this information as explained in the ‘What is the purpose of the study’ section above.
What will happen to my data?All project data related to the administration of the project, (e.g. consent form) will be held for at least 6 years and all research data for at least 10 years in accordance with University of Surrey policy. Your personal data will be held and processed in the strictest confidence, and in accordance with current data protection legislation. As a publicly-funded organisation, we have to ensure when we use identifiable personal information from people who have agreed to take part in research, this data is processed fairly and lawfully and is done so on the basis of public interest This means that when you agree to take part in this research study, we will use your data in the ways needed to conduct and analyse the research study. Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you decide to withdraw your data from the study, we may not be able to do so. We will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally-identifiable information possible. You can find out more about how we use your information https://www.surrey.ac.uk/information-management/data-protection and/or by contacting [email protected]
What if I want to complain about the way data is handled? If you wish to raise a complaint on how we have handled your personal data, you can contact our Data Protection Officer Mr James Newby who will investigate the matter. If you are not satisfied with our response or believe we are processing your personal data in a way that is not lawful you can complain to the Information Commissioner’s Office (ICO) (https://ico.org.uk/). For contact details of the University of Surrey’s Data Protection Officer please visit: https://www.surrey.ac.uk/information-management/data-protection
Thank you for reading this information sheet and for considering taking part in this research.
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Appendix 8 – Participant response rates
Participants contacted via post: 13
Participants who responded to postal request: 3
Participants who responded to postal request and participated: 3
Participants who did not respond to postal request and were telephoned by lead researcher: 10
Participants who were reached via telephone: 8 (2 participants could not be contacted via telephone due to incorrect phone numbers on the research register).
Participants who agreed to take part following telephone call: 4
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Appendix 9 – Demographic questionnaire
Age rangeUnder 50
50-59
60-69
70-79
80-89
Over 90
EthnicityWhite
British
Irish
Gypsy or Irish Traveller
Other White
Mixed/Multiple ethnic group
White and Black Caribbean
White and Black African
White and Asian
Other Mixed
Asian/Asian British
Indian
Pakistani
Bangladeshi
Chinese
Other Asian
Black/African/Caribbean/Black
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British
African
Caribbean
Other Black
Other ethnic group
Arab
Do you currently live with your partner?
Yes __________________ No___________________
Appendix 10 – Interview schedule
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Interview Questions
Introduction to the interview
Do you consider yourself to be a ‘carer’ to your partner?
How long ago was it that you learned that your partner was
diagnosed with dementia/memory difficulties?
Are you currently in employment? Approximately how many hours
per week do you work?
Tell me what it’s like for you to be a carer?
Do you think being a carer has an impact on your life in anyway?
Do you feel that being a carer has affected your relationship with
your partner?
Do you consider your caring role to be something you have to do?
Do you think support should come from the family?
Providing care to someone must have its challenges, what helps
you to continue to support your partner?
Were there any barriers to seeking support or help from services
when your partner was first experiencing difficulties?
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Appendix 11 – NHS ethical approval
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Appendix 12 – HRA approval
Mrs Kristy Rye Trainee Clinical PsychologistSurrey & Borders Partnership NHS Trust School of Psychology, University of Surrey Guildford, Surrey UK GU2 7XH
Email: [email protected]
13 April 2018 Dear Mrs Rye Study title: A study exploring the experience of Black and Minority Ethnic (BME) male caregivers of a partner with dementiaIRAS project ID: 236300 REC reference: 18/LO/0213 Sponsor University of Surrey
I am pleased to confirm that HRA Approval has been given for the above referenced study, on the basis described in the application form, protocol, supporting documentation and any clarifications received. You should not expect to receive anything further from the HRA.
How should I continue to work with participating NHS organisations in England? You should now provide a copy of this letter to all participating NHS organisations in England, as well as any documentation that has been updated as a result of the assessment.
The HRA has determined that participating NHS organisations in England will not be required to formally confirm capacity and capability before you may commence research activity at site. As such, you may commence the research immediately following sponsor provision to the site of the local information pack, so long as: You have contacted participating NHS organisations (see below for details). The NHS organisation has not provided a reason as to why they cannot participate. The NHS organisation has not requested additional time to confirm.
If not already done so, you should now provide the local information pack for your study to your participating NHS organisations. A current list of R&D contacts is accessible at the NHS RD Forum website and these contacts MUST be used for this purpose. After entering your IRAS ID you will be able to access a password protected document (password: Spring24). The password is updated on a monthly basis so please obtain the relevant contact information as soon as possible; please do not hesitate to contact me should you encounter any issues.
Commencing research activities at any NHS organisation before providing them with the full local information pack and allowing them the agreed duration to opt-out, or to request additional time (unless you have received from their R&D department
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notification that you may commence), is a breach of the terms of HRA Approval. Further information is provided in the “summary of HRA assessment” section towards the end of this document.
It is important that you involve both the research management function (e.g. R&D office) supporting each organisation and the local research team (where there is one) in setting up your study. Contact details of the research management function for each organisation can be accessed here.
How should I work with participating NHS/HSC organisations in Northern Ireland, Scotland and Wales? HRA Approval does not apply to NHS/HSC organisations within the devolved administrations of Northern Ireland, Scotland and Wales. If you indicated in your IRAS form that you do have participating organisations in one or more devolved administration, the HRA has sent the final document set and the study wide governance report (including this letter) to the coordinating centre of each participating nation. You should work with the relevant national coordinating functions to ensure any nation specific checks are complete, and with each site so that they are able to give management permission for the study to begin. Please see IRAS Help for information on working with Northern Ireland, Scotland and Wales.
How should I work with participating non-NHS organisations? HRA Approval does not apply to non-NHS organisations. You should work with your non-NHS organisations to obtain local agreement in accordance with their procedures. What are my notification responsibilities during the study? The document “After Ethical Review – guidance for sponsors and investigators”, issued with your REC favourable opinion, gives detailed guidance on reporting expectations for studies, including: Registration of research, Notifying amendments, Notifying the end of the study The HRA website also provides guidance on these topics, and is updated in the light of changes in reporting expectations or procedures. Following the arranging of capacity and capability, participating NHS organisations should formally confirm their capacity and capability to undertake the study. How this will be confirmed is detailed in the “summary of HRA assessment” section towards the end of this letter. I am a participating NHS organisation in England.
What should I do once I receive this letter? You should work with the applicant and sponsor to complete any outstanding arrangements so you are able to confirm capacity and capability in line with the information provided in this letter. Who should I contact for further information? Please do not hesitate to contact me for assistance with this application. My contact details are below. Your IRAS project ID is 236300. Please quote this on all correspondence. Yours sincerely Assessor Email: [email protected]
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Appendix 13 – Research & Development (R&D) approval
Email received 08.05.2018
Dear Kristy Study Title: A study exploring the experience of Black and Minority Ethnic (BME) male caregivers of a partner with dementiaIRAS reference: 236300REC reference: 18/LO/0213 I am pleased to confirm that the above study has now received authorisation to proceed in [name of service removed]. I have attached your letter of access. We would like to take this opportunity to wish you every success with your project. Yours sincerely
(Name removed)
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Appendix 14 – Letter of access
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Appendix 15 – Consent form
IRAS Reference Number: 236300
CONSENT FORM
Title of Study: Exploring the experience of male caregivers in dementia
Please complete this form after you have read the Information Sheet.
Thank you for considering taking part in this research. The person organising the research must explain the project to you before you agree to take part. If you have any questions arising from the Information Sheet or explanation already given to you, please ask the researcher before you decide whether to join in. You will be given a copy of this Consent Form to keep and refer to at any time.
By ticking each box you are consenting to this element of the study. It will be assumed that un-ticked boxes mean that you DO NOT consent to that part of the study and you may be deemed ineligible for the study.
1. I confirm that I have read and understood the information sheet (Version 4, dated 18/06/18) for the above study. I have had the opportunity to consider the information and asked questions which have been answered satisfactorily.
2. I understand that my participation is voluntary and that I am free to withdraw at any time without giving any reason and without being disadvantaged in any way. Furthermore, I understand that I will be able to withdraw my data up to the time of transcription, two weeks following the interview.
3. I consent to the processing of my personal information and I agree for my special category data (race, ethnic origin, religion) to be collected for the purposes explained to me and stated in the information sheet. I understand that such information will be handled in accordance with current data protection legislation.
4. I understand that my information may be subject to review by responsible individuals from the University of Surrey and/or regulatory authority for monitoring and audit purposes.
5. I understand that confidentiality and anonymity will be maintained and it will not be possible to identify me in any publications.
Please tick or initial
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6. I agree to be contacted in the future by University of Surrey researchers who would like to invite me to participate in follow up studies to this project, or in future studies of a similar nature.
7. I agree that the research team may use my anonymised data for future research and understand that any use of identifiable data would be reviewed and approved by a research ethics committee. (In such cases, as with this project, data would not be identifiable in any report).
8. I understand that the information I have submitted will be published as a report and I wish to receive a copy of it.
9. I consent to my interview being audio recorded.
__________________ __________________ _________________Name of Participant Date Signature
__________________ __________________ _________________Name of Researcher Date Signature
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Appendix 16 – Ethical considerations
1. Distressing topics
It was considered that some participants may find discussing their experience of being
a carer upsetting or distressing. To mitigate for this several steps were taken:
a. Prior to the interview, participants were sent a list of the main interview
questions. This allowed participants to decide if they would still like to go
ahead with the research.
b. During the interview, participants were informed that they could pause for a
short break if needed. Participants were also encouraged at the beginning of
the interview to share information that they felt comfortable with and that they
could chose not to answer any questions.
c. Following the interview, participants were provided with details and
resources for further support, such as dementia charities, mental health
charities such as Mind, carer organisations such as Caregivers UK, as well as
their GP.
2. Confidentiality
Due to the sensitive nature of the interviews, all participants were assigned
pseudonyms during transcription and write up of results. Names or details of services
which were considered to reveal personal information were also omitted from the
transcripts.
Interviews were audio recorded for transcription purposes; consent was gained from
participants for this. The audio recordings were transcribed by an external agency
who ensured confidentiality. The audio recordings were stored on a password
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protected and encrypted memory stick, following the requirements of the Trust and
University policies. Following transcription, the audio recordings were deleted.
3. Safeguarding
During the interview, it was considered that participants may disclose something
which is concerning such as risk to themselves or to others. Participants were made
aware at the start of the interview that whilst the interview is confidential, information
that causes concern about their safety or the safety of others, will need to be shared
with an appropriate team/service e.g. police, care team, GP.
As the participant was likely to be the main caregiver, we considered that it could
have been problematic for them to attend an interview at the hospital site. However,
this was mitigated by offering participants a time which was most convenient for
them and the researcher was flexible to their needs with regards to dates and times.
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Part 2: MRP Literature Review
A review of the literature on the experiences of Black and Minority Ethnic
(BME) familial caregivers of a person with dementia in the United Kingdom
(UK)
Abstract
Objective: To summarise and appraise the research available on the experiences of
caregivers from Black and Minority Ethnic (BME) communities, who care for a
family member with dementia in the United Kingdom (UK).
Methods: A systematic search of the literature was conducted using seven internet
databases. Following screening and removal of duplicates, thirteen articles were
included and reviewed in the literature review. A quality assessment tool, the
qualitative ‘Critical Appraisal Skills Programme (CASP)’, was used to appraise the
research.
Results: Several themes were drawn from the literature. Firstly, help seeking was
sometimes delayed in BME communities due to a lack of knowledge of dementia
symptoms and concerns about services not being culturally sensitive. Fear, shame and
stigma were found to be considerable barriers which prevented people from BME
groups seeking support from both professionals and others in the community. In some
cultures, caregiving was considered an extension of a relationship and a family matter.
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Conclusion: Whilst studies have considered the experience of caring for a family
member with dementia in BME communities, there are several limitations reported
which would be important for future research to address. For example, differences
within ethnic groups may have been missed due to grouping ethnicities widely such as
‘Asian’, resulting in possible misleading generalisations. Also, a lack of male
participants in the BME caregiver literature means that we are unclear of their
perspective and experience, especially the male spousal caregiver experience.
Keywords: dementia, carer, ethnic minority, bme, family caregiving
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Introduction
Dementia
Dementia is characterised as a neurodegenerative disease and is known to affect up to
47 million people worldwide (Prince et al. 2016), with an estimated 850,000 people
living with dementia in the United Kingdom (UK) (Prince et al. 2014). Dementia is
the leading cause of death in the UK and is a condition with no current treatment to
prevent or cure the disease (Office for National Statistics 2018).
The symptoms of dementia include deficits with memory and cognition which can
cause difficulties in performing activities of daily living. The degree of difficulty in
performing such tasks often depends on the severity of dementia and can include
basic tasks such as toileting, eating and dressing (Giebel, Sutcliffe and Challis 2015).
Some dementia sufferers may also display aggressive behaviour, as well as changes in
personality and behaviours that previously would have been typical for the person
(Isaksson et al. 2011).
Many interventions for people with dementia are aimed at addressing these symptoms
and behaviours; firstly, to improve and maintain a quality of life for the individual,
but also to reduce the burden for caregivers and family members (Burns and Rabins
2000). As the stages of dementia become advanced, people with dementia become
increasingly reliant on either family members or professionals to care for them
(Giebel, Sutcliffe and Challis 2015).
Dementia care is largely provided by family caregivers (Lawrence et al. 2008). In the
UK, it is estimated that there are approximately 700,000 informal caregivers for
people living with dementia (Lewis et al. 2014). A family caregiver is an individual
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who helps a relative who is experiencing difficulties due to physical, emotional or
cognitive impairments, often without financial compensation (Lawrence et al. 2008).
The burden of caring for a person with dementia has been well documented in the
literature (Johl, Patterson and Pearson 2016; Mittelman, Epstein and Pierzchala 2003).
The definition of ‘caregiver burden’ has been agreed as a negative reaction to the
impact of providing care to the caregivers social, occupational and personal roles
(Given et al. 2001). In a study by Papastavrou et al. (2007) they reported that from
their sample of 172 caregivers of people with dementia, 68 per cent felt highly
burdened and 65 per cent were showing depressive symptoms.
Due to this, there has also been considerable research into interventions aimed at
reducing caregiver burden, for example, offering caregivers therapeutic input such as
cognitive-behavioural therapy (CBT), psychoeducation and training. This is often
provided by dementia organisations or services (Pinquart and Sorensen 2006). Such
interventions have been deemed largely successful in reducing caregiver depression
and stress (Brodaty, Green and Koschera 2003). In addition to these interventions, the
use of respite services is often considered in conjunction with social services
(Pinquart and Sorensen 2006).
Help seeking in BME communities in the UK
People with dementia and their caregivers usually begin help seeking from close
family and then follow this up by consulting with primary care physicians (Werner et
al. 2014). This is important because timely diagnosis of dementia can maximise
autonomy including the ability to make future choices while decisional capacity is
present (Brooker and Latham 2015). It also enables people diagnosed and their
caregivers to make sense of what is happening and to receive help from appropriate
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services which may extend independence whilst living with dementia (Berwald et al.
2016).
Despite this, there is a long-standing issue within dementia services of the limited
uptake from BME groups. It has been found that individuals from BME groups who
have dementia are less likely to receive a diagnosis and when they are diagnosed it is
later than individuals from a White British sample (Adelman 2010; Bowes and
Wilkinson 2003). This is despite evidence that Black African and Caribbean elders
have a higher prevalence and earlier onset of dementia compared with the White
British population (Adelman 2010). Additionally, it has been suggested that when
individuals from BME groups are diagnosed with dementia they are less likely to use
services compared with the White British population (Berwald et al. 2016; Daker-
White et al. 2002).
It has been reported that some BME communities in the UK, such as South Asian, felt
that forgetfulness was a normal part of the aging process and therefore normalised
some of the symptoms of dementia, consequently delaying help seeking (Berwald et
al. 2016; Johl, Patterson and Pearson 2016). Similarly, Uppal, Bonas and Philpott
(2014) reported that within the Sikh community many participants did not recognise
dementia; there is believed to be a greater emphasis on physical illness. Additionally,
some BME groups considered dementia to be a ‘White person’s illness’ and therefore
not an illness that was applicable to them (Johl, Patterson and Pearson 2016).
When visiting the General Practitioner (GP), South Asians are often more likely to
incorporate physical symptoms, such as pain, into their presentation in comparison
with White British populations (Nazroo et al. 2002). A further important aspect was
that participants lacked awareness of the role of the GP in being able to refer onto
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specialist memory services that would be able to provide assessment or support
(Berwald et al. 2016).
Several studies have highlighted that some South Asian communities show limited
knowledge of the causes, symptoms and consequences of dementia (Purandare et al.
2007; Bowes and Wilkinson 2003). These factors are likely to impact on help seeking
and utilisation of services. More recent research has suggested that BME populations
may present to services later, possibly due to language barriers, but also due to the
stigma attached to dementia and a belief that family members should be relied upon
rather than dementia services (Werner et al. 2014). Mukadam et al. (2015) conducted
interviews with South Asian adults without a diagnosis of dementia to explore their
perceptions of help seeking for memory problems. They found that stigma associated
with cognitive decline prevented help seeking and that people would wait until
symptoms were more frequent before seeking help. For some participants, they felt
that the stigma of a memory disorder was worse than a chronic physical illness.
However, a recent study by Cook et al. (2018) considered referrals to memory
services across London and found that the percentage of referrals for people from
BME groups was higher than expected (20.3% versus 19.4% from 13,166 referrals).
They state that 79 per cent of memory services had more referrals than expected or no
difference for all BME groups. Yet, the authors comment that prevalence of dementia
in some ethnic groups may be higher, so these numbers could still indicate under-
referral.
Caregiving in BME communities in the UK
People from BME communities comprise 15 per cent of the English and Welsh
population and 40 per cent of the London population (Office for National Statistics
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2012). Research outside of the UK has suggested that ethnicity and culture of origin
may play a significant role in the caregiving experience (Roth et al. 2001). However,
earlier studies often reported mixed findings with limited attention to the experiences
of ethnic minorities other than African-Americans (Dilworth-Anderson, Williams and
Gibson 2002; Janevic and Connell 2001).
African Caribbean and South Asian communities represent the largest BME
communities in the UK, yet the evidence base regarding dementia care in these
communities is limited. Research points to significant variation among BME
communities for example, in a study by Parveen, Morrison and Robinson (2011) they
reported differences between British Indian and British Pakistani caregivers over
whose duty it was to provide care in the family. British Indian daughter caregivers felt
that it should be the daughters-in-law duty whilst British Pakistani caregivers felt that
the daughter should assume caregiving responsibility.
Additionally, British Bangladeshi caregivers linked the care they provided to fulfilling
cultural duties, in addition to beliefs held that an outsider to the family could not
provide a similar level of care (Parveen, Morrison and Robinson 2011). The same
researchers also reported that whilst all caregivers discussed positive and negative
aspects of caregiving, British Indian and British-Pakistani caregivers referred to
sacrifices they have made to be a caregiver, whilst British-Bangladeshi caregivers
appeared to be more accepting of the negative aspects of providing care.
The cultural value of ‘familism’ has been an interest in ethnic caregiving studies
because a strong family orientation may affect the caregiving experience including
caregiver stress. Familism is the family level version of collectivism, different to the
American and European individualism, and reflects a valuing of the family system
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over the individual member of that system (Losada et al. 2006). The term familism
refers to a strong attachment of individuals within their families and associated
feelings of loyalty and solidarity (Brody 1985).
Familism has been found to be significantly correlated with lower burden in an
American Hispanic caregiver sample, but with higher levels of depressive symptoms
in a Spanish sample. This highlights the specific cultural context and the difficulty
with treating all ethnicities the same, for example, the Hispanic sub group in America
presents differently to Hispanic groups in Spain (Losada et al. 2006).
Although familism has been suggested as a possible protective factor against negative
caregiving outcomes, in the USA it has also been proposed to relate to Hispanic
dementia caregivers’ low utilization of mental health services. This is because
discussing mental health problems of the relative with others is equivalent to
tarnishing the image of the individual and his or her family in the community. This
could be especially important when talking about the older Hispanic caregivers,
because cohort differences may be present in the reluctance to talk about distress
associated with caregiving responsibilities (Gallagher-Thompson et al. 2003). This
may be specific to this population or may be a feature of other BME groups in the UK
too.
Familial relationships within caregiving
Research that considers the familial caregiver experience, can often include the
experiences of spousal caregivers, adult children and children in law. Whilst it is
important to be informed about the experiences of all these groups, merging the
experiences of heterogeneous caregivers may lead to mixed findings as there may be
significant differences in age, support and expectations depending on the familial
105
relationship. Also, as a spouse caregiver will often live with the care recipient, they
may provide more hours of support and may have less respite than adult children for
example (Tennstedt, Crawford and McKinlay 1993).
Yet, there are mixed findings on the differences in caregiving experience depending
on familial role. Research by Hong and Kim (2008) reported that spouses have higher
total burden than adult children, whilst Young and Kahana (1989) found the opposite.
A meta-analysis by Pinquart and Sorensen (2011) suggested that spouses report more
depressive symptoms, financial and physical burden, in addition to lower levels of
wellbeing. The authors report that the higher depressive symptoms are somewhat
explained by spouses providing higher levels of care provision. This suggests that it is
important to consider the experience of each group individually, rather than grouping
the different familial roles.
Rationale
Several previous literature reviews have been conducted to explore the experiences of
dementia caregivers in BME communities (Hossain et al. 2018; Kenning et al. 2017;
Daker-White et al. 2002). However, these reviews have included studies conducted
with BME groups worldwide and therefore we cannot be clear on the applicability to
BME communities within the UK. Alternatively, reviews have focused exclusively on
one BME group, such as South Asians (Blakemore et al. 2018) or Black and South
Asians (Milne and Chryssanthopoulou 2005).
One previous literature review aimed to review the literature (between 2005 and
2014) on the attitudes and experiences of all BME caregivers of people with dementia
in the UK (Johl, Patterson and Pearson 2016). An updated literature review is
necessary to build on this previous review by focusing on the specific challenges to
106
BME communities in dementia with regards to; help seeking, stigma and change in
caregiver relationship. This will allow for a more focused appraisal of the research in
this field. The current review aims to achieve this by focusing on the following
research questions.
Research questions
1) What does the research tell us about the help seeking behaviours of familial
caregivers in dementia from BME communities in the UK?
2) What does research tell us about the role of stigma for familial caregivers in
dementia from BME communities in the UK?
3) What does research tell us about the changes in the relationship when a family
member becomes a caregiver for a person with dementia in BME communities in the
UK?
Method
Aim
The review aims to answer the research questions by conducting a systematic search
of the literature to date, appraising the literature and identifying gaps that future
research could explore.
Scoping
An initial scoping of the literature was conducted using combinations of words that
the researcher thought would generate appropriate search results. This was based on
knowledge of the field and utilising previous relevant literature reviews such as Johl,
Patterson and Pearson (2016). In addition to the search terms focused on ethnicity, it
was found that including religious search terms such as Muslim, Hindu and Sikh also
107
captured papers that focused on the BME communities in the UK, and therefore these
were included in the search.
Search strategy
The major psychological, social science and nursing electronic databases were
searched from inception of the journals until July 2019 inclusive. This included
PsychINFO, CINAHL, Medline, PsycARTICLES, Psychology & Behavioural
Sciences, Scopus and Web of Science.
The search strategy contained three combined concepts. The first concept related to
the topic of dementia, the second concept linked the topic of familial caregiving and
the third concept incorporated a focus on ethnic minority groups. The concepts were
searched within the title, abstract and keywords of papers.
The following search terms were used:
Concept One - ‘dementia’ OR ‘Alzheimer*’
AND
Concept Two - ‘carer’ OR ‘caregiv*’ OR ‘care-giving’ OR ‘famil* care*’ OR ‘partner
care*’ OR ‘spouse care*’ OR ‘child care*’
AND
Concept Three - ‘bame’ OR ‘bme’ OR ‘ethnic minorit*’ OR ‘black minority ethnic’
OR ‘ethnicity’ OR ‘race’ OR ‘South Asian’ OR ‘Asian’ OR ‘Black’ OR ‘African
Caribbean’ OR ‘Indian’ OR ‘Irish’ OR ‘Eastern European’ OR ‘Bangladeshi’ OR
‘Pakistani’ OR ‘Muslim’ OR ‘Hindu’ OR ‘Sikh’
108
All searches excluded results unavailable in English. Theses and dissertations which
were unpublished were excluded due to access restrictions. All search results were
exported into bibliographic software (RefWorks), where duplicate records were
removed, leaving 866 potentially eligible records (see Figure 1).
Further screening
Reference lists of articles and literature reviews were checked for any further relevant
papers. No additional papers were identified.
Inclusion criteria
The inclusion criteria at screening was:
1) Caregiver experience was described in the context of BME groups. Where
studies included a comparison group of a majority population (e.g. White
British), these were included if findings for the BME groups could be
extrapolated.
2) The caregiver is a family member (rather than professional or paid carer).
Where studies included a combination of family caregivers and professionals,
these were included if findings related to familial caregivers could be
extrapolated.
3) The research described the experience of the caregiver, rather than the person
with dementia.
4) The study reported on caregivers who provided support for someone with
dementia, rather than other conditions or illnesses. Where studies included
multiple conditions such as dementia and stroke, these were included if
findings related to dementia could be extrapolated.
109
5) Studies reported on BME caregiver experiences in the UK only.
6) Both quantitative and qualitative methodologies were included.
Exclusion criteria
The exclusion criteria at screening was:
1) Literature reviews or book chapters.
2) Studies that reported on BME caregiver experiences outside of the UK.
3) Theses and dissertations which were unpublished.
4) The study reported on caregivers who provided support for someone with a
condition or illness other than dementia e.g. stroke, cancer.
5) Studies that discussed perceptions of dementia in BME communities with non-
caregivers.
Thirteen articles were found to meet the inclusion criteria at screening. Each of the
thirteen articles were accessed in full.
110
Figure 1: Prisma diagram
PRISMA 2009 Flow Diagram
Records identified through database searching
(n = 1628)
Sc re en in g
In cl ud ed
Eli
gib ilit y
Id en tifi ca tio n Additional records identified through other sources (reference
lists)(n = 0)
Records after duplicates removed(n =866)
Records screened(n = 866)
Records excluded based on title or abstract
(n = 809)
Full-text articles assessed for eligibility
(n = 57)
Full-text articles excluded, with reasons
(n = 44)
Not related to caregiver experience (25)Not related to dementia (8)Not in the UK (5)Review article (6)
Studies included in qualitative synthesis
(n = 13)
111
Synthesis of results
Research articles were synthesised using a ‘narrative synthesis’ approach (Popay et al.
2006). Following the guidance for this approach by Popay et al. (2006) the four main
elements were followed.
1. Developing a theory
Each paper was read several times to provide the researcher with an overview of the
experiences of BME caregivers within dementia. Based on this, the researcher held
some initial ideas of the experiences of being a caregiver for this population. This
enabled the researcher to start developing a ‘theory’.
2. Developing a preliminary synthesis of findings of included studies
Again, papers were read in detail and a table was used (Table 2) to develop initial
descriptions of the studies. This helped to identify patterns across studies, particularly
with regards to the findings. It became apparent from this stage, that there were
common limitations across studies (for example, the limited number of participants
who were male caregivers).
3. Exploring relationships in the data
This stage involved identifying key themes across the research studies. Initially, a
word document was used to keep note of themes that were arising from each paper.
The themes were then finalised with the use of a thematic map.
4. Assessing the robustness of the synthesis
A quality assessment tool was used to identify areas of strength and weakness across
the studies used in the synthesis (see below ‘Quality assessment tool’). The studies
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were rated according to a checklist and this was discussed in Table 2 and in the results
section to promote transparency.
Quality assessment tool
As all papers included in the review used a qualitative methodology, the Critical
Appraisal Skills Programme (CASP 2018) qualitative tool was used. The use of a
quality assessment tool for qualitative studies is a debated topic as some researchers
argue that it can be considered reductionist. As such, there is no one agreed criteria
for assessing qualitative research (Ring et al. 2011). However, others argue that the
use of a quality assessment tool is a pragmatic approach that should be utilised where
possible to avoid unreliable conclusions (Thomas and Harden 2008). The CASP tool
for qualitative research is a well-recognised tool and the most commonly used tool
when assessing the trustworthiness, relevance and results of qualitative research
(Noyes et al. 2018; CASP 2018). It covers all aspects that are recognised by National
Institute for Clinical Excellence (NICE) for assessing quality of research.
CASP consists of 10 questions which assess the aims, methodology, rigour of analysis
and how valuable the results are (Table 1). Each question has several prompts for the
reviewer to consider before rating. Dixon – Woods et al. (2007) suggest that the
CASP tool can be used to identify papers as a key paper (KP; score of 8 or above), a
satisfactory paper (SAT; score of 6 or above) or a paper that is fatally flawed
methodologically (FF; score of 5 or below). The researcher used the CASP tool to
assess all papers with the supervisor assessing two papers to check for consistency in
ratings (Appendix 2).
The CASP tool was not used for exclusion purposes, but so the results of the studies
could be understood in the context of the quality of the study in its publishable format.
113
It has been recognised then when using a quality assessment tool for the assessment of
qualitative research, reviewers may choose to exclude studies that are deemed ‘fatally
flawed’ or include them, but the important factor is that the researcher discusses the
quality in the review (Popay et al. 2006). Notes on the quality of the studies are
included in Table 2 and described in the results section.
Table 1. CASP Quality assessment tool
Qualitative quality assessment tool1. Was there a clear statement of the aims of the research?2. Is a qualitative methodology appropriate?3. Was the research design appropriate to address the aims of the research?4. Was the recruitment strategy appropriate to the aims of the research?5. Was the data collected in a way that addressed the research issue?6. Has the relationship between researcher and participants been adequately
considered?7. Have ethical issues been taken into consideration?8. Was the data analysis sufficiently rigorous?9. Is there a clear statement of findings?10. How valuable is the research?
ResultsSee Table 2 overleaf.
114Table 2 – Summary of findings
Authors and study title
Aim Country of study and ethnicity
Method and design
Summary Limitations Quality appraisal
Adamson (2001)
Awareness and understanding of dementia in African-Caribbean and South Asian families.
To explore the awareness of dementia symptoms in family caregivers of South Asian and African / Caribbean carers in the UK.
UK
African- Caribbean (18)
South Asian (12)
Qualitative
Interviews with 30 caregivers
Thematic analysis
General awareness of dementia was low, until a family member was diagnosed.
Difficulties arose in caregiver relationships due to lack of understanding of the condition.
Majority of caregivers were female (24/30), therefore unable to reflect on experiences of male caregivers.
Majority of caregivers were under 40 years of age (20/30) and included a range of caregivers (spouse, child, in-law, granddaughter, niece).
9/10KP
Adamson and Donovan (2005)
Normal disruption: South Asian and African/Caribbean relatives caring for an older family member in the UK.
To examine the meanings of being an informal caregiver of an older family member for South Asian and African- Caribbean caregivers.
UK (London, Bristol, Leicester, Bradford or Nottingham)
African- Caribbean (21)
South Asian (15)
Qualitative
Interviews with 36 caregivers
It was reported that caregivers described their caregiving role as an accepted part of their biography and a continuation of their previous relationship.
Caregivers also spoke about the changes to their relationships and how these were considered disruptive.
Majority of caregivers were female (does not specify amount), therefore unable to reflect on experiences of male caregivers.
Does not provide details of the familial relationship of the caregiver to the person with dementia.
9/10KP
115Table 2 – Summary of findings
Authors and study title
Aim Country of study and ethnicity
Method and design
Summary Limitations Quality appraisal
The relationship between the researcher and the participants has not been considered.
Baghirathan, Cheston, Hui, Chacon, Shears and Currie (2018)
A grounded theory analysis of the experiences of carers for people living with dementia from three BAME communities: Balancing the need for support against fears of being diminished.
To explore the experiences of caregivers from three different BME communities who provide care for people who are living with dementia. Also, to ask why they think people might be reluctant to access dementia care services.
UK (Bristol)
South Asian (47)
African Caribbean (25)
Chinese (31)
Qualitative
Interviews with 27 participants and 8 focus groups attended by 76 participants
Grounded theory
‘Fear of diminishment’ was present across all communities: caregivers needed and wanted support, but they were reluctant to accept this if it came at the cost of being diminished as a person.
Caregivers utilised voluntary and community sector organisations who could provide ongoing support and advocated on behalf of their members.
The caregivers involved in the study were defined broadly and could include familial caregivers and volunteers and members of staff from BME-led Voluntary and Community Service Organisations (although results could be extrapolated for familial caregivers).
Majority of people who took part were female (78/103).
9/10KP
116Table 2 – Summary of findings
Authors and study title
Aim Country of study and ethnicity
Method and design
Summary Limitations Quality appraisal
Botsford, Clarke and Gibb (2012)
Dementia and relationships: experiences of partners in minority ethnic communities.
To examine the experiences of partners of people with dementia in two ethnic minority communities.
UK (London)
Greek Cypriot (7)
African- Caribbean (6) partners
Qualitative
43 interviews with 13 caregivers (over an 18-month period).
Grounded theory
The partners engaged in an on-going process of ‘redefining’ the relationship.
Greek Cypriot partners tended to emphasise family relationships whilst African- Caribbean partners tended to view themselves primarily as an individual or as part of a couple.
The participants were in contact with services but it was not designed to capture the views of people not in contact with services.
The researchers acknowledge that they do not share the same ethnic background as the participants and this may have impacted on the relationship between researcher and participants.
10/10KP
Bowes and Wilkinson (2003)
We didn’t know it would get that bad: South Asian
To examine the views and experiences of dementia among older South Asian people, as well as their families and
UK (Scotland)
South Asian (does not specify how many caregivers took part)
Qualitative
Interviews with 11 professionals and case studies built through discussion with families and
The case studies highlighted that caregivers and families had negative views of dementia, with poor quality of life and a need for additional support.
The sample of ‘South Asian’ may not account for differences between participants from different countries in South Asia.
8/10KP
117Table 2 – Summary of findings
Authors and study title
Aim Country of study and ethnicity
Method and design
Summary Limitations Quality appraisal
experiences of dementia and the service response.
caregivers, and to explore central issues of service support.
caregivers
Thematic analysis
There was a lack of access to appropriate services and caregivers had little knowledge of dementia. This led to isolation from community and family life.
Limited information available on the nature of data analysis undertaken by the researchers.
Further research needed to understand how to assist families and people with dementia in accessing and seeking support.
Hossain and Khan (2019)
Dementia in the Bangladeshi diaspora in England: A qualitative study of the myths and stigmas about dementia.
To explore the experiences of Bangladeshi family caregivers of people with dementia in England.
UK (London and Portsmouth)
Bangladeshi (6)
Qualitative
Semi structured interviews with 6 family caregivers
Thematic analysis
Three major themes emerged;Caregiving journey into dementia, impact of dementia on family caregivers and caregiving support and help.
Dementia was considered a medical condition (rather than a punishment from
Caregivers included had a wide age range from 23 to 64 years.
Relatively small sample of six participants, who self-selected to take part in the research.
4 females and 2 males took part. Both males were sons looking
10/10KP
118Table 2 – Summary of findings
Authors and study title
Aim Country of study and ethnicity
Method and design
Summary Limitations Quality appraisal
God).Participants believed there was no stigma associated with dementia.
after elderly parents. Female caregivers were a daughter, a wife and two other family caregivers (relationship not defined).
Jolley, Moreland, Read, Kaur, Jutlla, and Clark (2009)
The ‘Twice a child’ projects: Learning about dementia and related disorders within the black and minority ethnic population of an English city and improving relevant services.
To identify new and recurrent issues for caregivers within the South Asian and African-Caribbean community.
UK (Wolverhampton)
Asian
African-Caribbean
Qualitative
Interviews with 15 caregivers
There is limited knowledge of dementia among older Asian and African-Caribbean caregivers. Fear, shame and stigma are associated with mental illness in both cultures, which can delay help seeking.
When using services, caregivers feel that professionals lack confidence and competence with language and cultural differences. The needs
Limited information available about the researchers’ recruitment strategy.
No details about the researchers’ data analysis.
The relationship between the researchers and the participants has not been considered.
7/10SAT
119Table 2 – Summary of findings
Authors and study title
Aim Country of study and ethnicity
Method and design
Summary Limitations Quality appraisal
of individuals and their families are unique.
Jutlla (2015)
The impact of migration experiences and migration identities on the experiences of services and caring for a family member with dementia for Sikhs living in Wolverhampton, UK.
To explore how migration experiences and life histories impact on perceptions and experiences of caring for a family member with dementia for Sikhs living in Wolverhampton.
UK (West Midlands)
Sikh (12)
Qualitative
Narrative interviews with 12 caregivers
Migration experiences and migration identities are important for understanding participant’s experiences of services and experiences of caring for a family member with dementia.
Person centred care for dementia is important to understand life history for individuals with dementia and their caregivers.
The relationship between the researcher and the participants has not been considered.Limited information available about how the researchers addressed ethics such as consent or confidentiality.
Large variation in sample, which consisted of the experiences of husband, wife, child, in-laws.
Majority of participants were female (9/12).
8/10KP
120Table 2 – Summary of findings
Authors and study title
Aim Country of study and ethnicity
Method and design
Summary Limitations Quality appraisal
Jutlla and Moreland (2009)
The personalisation of dementia services and existential realities: Understanding Sikh caregivers caring for an older person with dementia in Wolverhampton.
To consider the diversity and complexity of migration patterns amongst the Sikh community who provide care to someone with dementia.
UK
South Asian and Sikh (5)
Qualitative
Interviews with 5 caregivers, although the paper presents 2 as case studies
Biographical narrative approach
The findings suggest the importance of considering the migration journey of the caregiver and how this will impact on their ability to access services and their experiences of being a caregiver.
There is a need for personalisation of services to meet unique needs of families – Ethnic minority groups are not homogenous and service providers need to consider the diversity and difference in key life aspects (e.g. migration).
Authors recognise that their conclusions remain tentative due to the early stage of this area being researched and that further research is needed. Limited information available about the data analysis.
8/10KP
Lawrence, To explore the UK (South Qualitative ‘Traditional’ or ‘non- Further research 8/10
121Table 2 – Summary of findings
Authors and study title
Aim Country of study and ethnicity
Method and design
Summary Limitations Quality appraisal
Murray, Samsi and Banerjee (2008)
Attitudes and support needs of Black Caribbean, south Asian and White British caregivers of people with dementia in the UK.
caregiving attitudes, experiences and needs of family caregivers of people with dementia from the three largest ethnic groups in the UK.
London)
Black Caribbean (10)
South Asian (10)
White British (12)
Interviews with 32 caregivers
Grounded theory
traditional’ caregiver ideologies were identified. Traditional ideologies viewed caregiving as natural, expected and virtuous. The majority of the South Asian, half of the Black Caribbean and a minority of the White British participants were found to possess a traditional ideology.
should look to explore the experiences of caregivers from different geographical areas as this study was limited to people living in South London.
The authors also acknowledge the predominance of female caregivers within their sample and therefore are unable to explore how gender may relate to caregiver ideology (7 males, 25 females).
KP
Mackenzie (2006)
Stigma and dementia: East European and south Asian
To understand appropriate support group materials for South Asian and Eastern European family
UK
South Asian including:Pakistani (11)
Indian (5)
Qualitative
Semi structured interviews with 21 family caregivers
Eastern European caregivers discussed the importance of keeping matters private. It was felt that people outside of the close family group
Limited information on demographics of caregivers (e.g. age range, type of relationship to person with dementia, gender of caregivers).
8/10KP
122Table 2 – Summary of findings
Authors and study title
Aim Country of study and ethnicity
Method and design
Summary Limitations Quality appraisal
family carers negotiating stigma in the UK.
caregivers of relatives with dementia.
Eastern European including: Polish (4)
Ukrainian (1)
Thematic analysis
become an invasion of privacy. Concept of ‘keeping face’ to manage inner pride.
South Asian caregivers placed an emphasis on moral obligation to the family and their faith in providing care. Dementia was considered a mental illness.
The findings and conclusions combine caregivers from two regions under a wider ethnic label e.g. South Asian (for both Pakistani and Indian caregivers).
Mukadam, Cooper, Basit and Livingston (2011)
Why do ethnic elders present later to UK dementia services? A qualitative study.
Exploring the link between attitudes to help-seeking for dementia and the help seeking pathway in the ethnic minority and indigenous population.
UK
White UK (4)
South Asian (5)
Black (African or Caribbean, 5)
White Irish (1)
White Other (1)
Qualitative
Semi-structured interviews with 18 family caregivers
Thematic analysis
Ethnic minority caregivers, in contrast to the indigenous population, tended to delay help seeking until they could no longer cope or until others commented on the problems. They often thought that families should look after their own elders
The sample is drawn from people already in touch with services.
A wide age range of caregivers from 27 to 85 years old. Caregivers were predominately female (does not provide numbers).
9/10KP
123Table 2 – Summary of findings
Authors and study title
Aim Country of study and ethnicity
Method and design
Summary Limitations Quality appraisal
Asian Other (1)
Chinese (1)
(familial responsibility) and a diagnosis alone was purposeless.
A broad range of ethnicities studied with small sample.
The relationship between the researcher and the participants has not been considered.
St. John (2004)
Hidden shame -- a review of the needs of Asian elders with dementia and their carers in a Kent community.
To explore the need among older Asians with dementia and their families for services, why the current utilisation of specialist services is low and to consider the types of support that would be helpful.
UK (Kent)
Asian (does not specify how many caregivers took part)
Qualitative
Workshops and focus groups with caregivers, community members and older people.
Data from caregivers suggest that they were looking after relatives for 24 hours a day without respite. Triggers for help seeking were the loss of independence of the person with dementia.
Caregivers wanted greater access to services such as Asian day centres.
There was a lack of
Limited information on demographics of caregivers (e.g. age range, type of relationship to person with dementia, gender of caregivers).
Categorises ethnicity widely as Asian.
Does not state how many caregivers took part in the study.
7/10SAT
124Table 2 – Summary of findings
Authors and study title
Aim Country of study and ethnicity
Method and design
Summary Limitations Quality appraisal
knowledge about dementia among the Asian caregivers; most participants were not familiar with the word dementia or Alzheimer’s (no equivalent in Asian languages).
125
Sample demographics
All papers included in the review used a qualitative methodology. The papers had
sample sizes ranging from five participants (Jutlla and Moreland 2009) to 103
(Baghirathan et al. 2018). The largest sample size of 103 involved several focus
groups in addition to interviews with caregivers. Of the papers that detailed the gender
of participants, on average 74 per cent were female (total of 146 females and 50
males). Yet, one study (Botsford, Clarke and Gibb 2012) included more male
participants than females (seven males and six females).
All studies took place in the UK with geographical locations cited as Bradford,
Bristol, Kent, Leicester, London, Nottingham, Portsmouth, Scotland, West Midlands
and Wolverhampton. The ethnicities studied included Asian, South Asian (Indian,
Bangladeshi and Pakistani), African-Caribbean, Chinese, Greek Cypriot, Eastern
European (Polish and Ukrainian), White Irish and White Other. Two studies included
comparison groups of White British caregivers (Mukadam et al. 2011; Lawrence et al.
2008). The authors highlight within the papers where findings are specific to the
White British participants and reflect on how the BME groups were either similar or
different to the majority group. Two studies also discussed caregivers in terms of their
religion of Sikhism (Jutlla 2015 and Jutlla and Moreland 2009).
The majority of studies considered the experiences of all familial caregivers, therefore
combining experiences of a partner, child and children-in-law caregivers. One paper
focused on spousal caregivers only (Botsford, Clarke and Gibb 2012).
Quality appraisal analysis
All thirteen papers were assessed for quality using the CASP qualitative tool.
According to the tool, 11 papers were considered to be ‘key papers’ (Adamson 2001;
126
Adamson and Donovan 2005; Baghirathan et al. 2018; Botsford, Clarke and Gibb
2012; Bowes and Wilkinson 2003; Hossain and Khan 2019; Jutlla 2015; Jutlla and
Moreland 2009; Lawrence et al. 2008; Mackenzie 2006; Mukadam et al. 2011) whilst
two were rated ‘satisfactory papers’ (Jolley et al. 2009; St. John 2004). No papers
were identified as being ‘fatally flawed’. The results are demonstrated in Appendix 2.
A strength of all 13 papers is they contained a clear statement of the aims of the
research. This helps the reader to have a clear focus of the research and therefore to
understand if the chosen methodology is appropriate. Again, all 13 papers considered
how a qualitative methodology was appropriate in addressing the aims of the research.
A further strength of the papers was that they all contributed to knowledge by having
a clear statement of their findings and discussed the contribution the study makes to
existing knowledge or understanding.
A limitation of many of the studies in the current review is that it is not clear if the
researchers considered the relationship between the interviewer and interviewee
(Adamson and Donovan 2005; Baghirathan et al. 2018; Bowes and Wilkinson 2003;
Jolley et al. 2009; Jutlla 2015; Jutlla and Moreland 2009; Lawrence et al. 2008;
Mackenzie 2006; Mukadam et al. 2011; St. John 2004). This is an important element
of all research, but particularly qualitative research whereby the researcher may
influence the information provided by the participant. For example, the researcher’s
prior experiences or unconscious bias could influence interview questions or data
interpretation.
Ethical issues did not appear to be considered in detail in several papers (Adamson
2001; Jolley et al. 2009; Jutlla 2015; Jutlla and Moreland 2009; Lawrence et al. 2008;
Mackenzie 2006; St. John 2004). For example, there were insufficient details of how
127
the research was explained to participants for the reader to assess whether ethical
standards were maintained, or the reader was not told whether informed consent or
confidentiality had been addressed with study participants.
A further difficulty of assessing the quality of the papers was the lack of information
regarding the data analysis undertaken by the researchers. For example, three papers
(Bowes and Wilkinson 2003; Jolley et al. 2009; St. John 2004) did not provide
information about the analysis process or offer information about how themes were
derived from the data. Furthermore, the researchers did not examine their own
potential bias during the analysis or selection of data or quotes used in the papers.
This makes it difficult for other researchers to replicate the methodology or to
determine how themes emerged from the data.
Summary of findings
Three main themes were drawn from the literature review in order to answer the
research questions. These were Help seeking; Fear, shame and stigma; and Caregiver
relationship.
Help seeking
All papers discussed the difficulties in accessing support and delayed help seeking for
the BME communities they were studying. In the research by St. John (2004), the
barriers to accessing services from Asian caregiver’s perspective included linguistic
and cultural issues, bureaucracy and lack of GP referral. Specific barriers that were
spoken about included cost of services such as day centres, the need to hide problems,
pride, familial duty, concern about what others think and the perception that using
services is a sign of failure.
128
The research also suggested that help seeking was delayed as there was very little
basic knowledge about dementia in BME communities. For example, the research by
St. John (2004) with Asian familial caregivers found that most participants were not
familiar with the word dementia or Alzheimer’s. Dementia, particularly in the early
stages, was understood as a result of old age rather than an organic disease. Therefore
participants did not consider or delayed visiting their GP as it was not something they
thought would be treatable. This was also supported in further research with an Asian
caregiver group (Jolley et al. 2009). It is worth noting that a criticism of the research
by St. John (2004) is that there is limited information available on the demographics
of the caregivers who participated in the study, such as the age of the caregivers,
which may influence their knowledge of dementia. Additionally, caregivers are
grouped widely as ‘Asian’.
Adamson (2001) reported that whilst African-Caribbean familial caregivers did
express some awareness of dementia, this was often not present before their relative
was diagnosed. Three of the caregivers (out of 30 in total) said they had never heard
of the condition before. This was also applicable to the South Asian familial
caregivers who took part in the research, with the majority of caregivers saying they
had not heard of dementia before their relative was diagnosed. A lack of knowledge
of the symptoms of dementia prior to their relative being diagnosed was found to
greatly impact on the timing of help seeking for both African-Caribbean and South
Asian caregivers in this study. In line with this, Jolley et al. (2009) suggests that there
is an overwhelming need for African-Caribbean and Asian caregivers to be provided
with education and information about dementia in order to encourage help seeking
from services in a timely manner.
129
Additionally, in more recent research it was reported that Bangladeshi caregivers did
accept dementia as a medical condition, but not until their family member had been
diagnosed (Hossain and Khan 2019). The majority of familial caregivers reported that
they had no prior knowledge of dementia and therefore they did not recognise the
initial symptoms. Due to this it often took a period of time, anywhere between three
months to ten years, for participants to visit their GP and for dementia to be
diagnosed.
Delays in help seeking have also been identified in research in Caribbean
communities, possibly due to a lack of trust with health services (Baghirathan et al.
2018). It was reported that people from Caribbean communities, particularly men,
held views that visiting a doctor to discuss concerns with memory loss was associated
with the risk of being ‘locked up’ (Baghirathan et al. 2018).
In the same research, participants from Caribbean communities also discussed a
deterrent to access support as a risk of isolation. This was due to beliefs that being in
an ethnic minority would mean their cultural needs would be ignored by
professionals. An example provided by a Caribbean caregiver was that day centres
were not culturally appropriate for her family member as they did not serve Caribbean
food. This was supported in research by Jolley et al. (2009) with African-Caribbean
and Asian familial caregivers suggesting that they find professionals and services do
not have the confidence to manage language and cultural differences.
Due to the barriers discussed, it was recognised across several studies that help
seeking may not occur until individuals are in crisis and dementia symptoms are
described as severe. Research by Mukadam et al. (2011) suggested that BME
communities in their sample (South Asian, Black (African or Caribbean), White Irish,
130
White Other, Asian Other and Chinese) held beliefs that memory problems should be
dealt with by the family until reaching a crisis point. It is important to note that within
this research, there was a broad range of ethnicities studied with small samples, for
example, five South Asian, one White Irish and one Chinese caregiver. Additionally,
there was a large difference in the ages of participants ranging from 27 to 85 years
old. Therefore, experiences have been merged widely.
In order to understand factors that would promote help seeking, the research by St.
John (2004) asked caregivers what they would like from services. Participants
requested more information regarding dementia and how the illness could impact on
their relative. Also, BME caregivers felt that access to services should be provided
within mainstream care, yet Asian caregivers felt it was important for Asian
professionals to be working in the service, especially for the current generation of
older people (St. John 2004). Participants believed this would help services to be
more sensitive to their cultural needs. Furthermore, when Asian caregivers did want
respite from the caring role, they explained they had not been offered this service.
Asian caregivers felt that assumptions were being made about Asian families ‘looking
after their own’ (St. John 2004).
Finally, the research by Jutlla (2015) and Jutlla and Moreland (2009) suggest that to
fully understand the barriers to help seeking within BME groups, we must appreciate
and consider the migration experiences of individuals. For example, in the research by
Jutlla (2015) it was described that individual’s experiences of being poor or any
struggles integrating into UK society, played important roles in how individuals
perceived accessing support from services. However, it is important to note the
limitations of this research as there is limited information available about data
131
analysis (Jutlla and Moreland 2009) and participants were both partners and children
(Jutlla 2015).
Fear, shame and stigma
The papers reviewed suggested that BME communities are affected by fear, shame
and stigma related to a dementia diagnosis. Research by Jolley et al. (2009) with
African-Caribbean and Asian familial caregivers revealed that in both groups of
caregivers, difficulties with caregiving were hidden due to the shame and stigma
associated with mental disorders and dementia. This can go some way to explain the
later presentation to services and diagnosis that is often seen within this population.
Yet, a limitation of the research by Jolley et al. (2009) is that little information is
available about the recruitment strategy or data analysis in the research.
Research by Mackenzie (2006) considered the stigma associated with dementia in
Eastern European caregivers. It was felt that there was a pressure to keep matters
private and this prevented caregivers from speaking openly about the difficulties they
were facing. Caregivers felt that to discuss a family member’s diagnosis of dementia
would invite condemnation from others in their own community.
Eastern European spousal caregivers attempted to manage the stigma linked with
dementia by describing their partners condition as a physical illness. Whilst they felt
this was possible in the early stages of the condition, it prevented caregivers from
socialising with others as the condition progressed (Mackenzie 2006). Similarly,
Baghirathan et al. (2018) suggested that for Chinese caregivers, there was a familial
shame accompanied by memory loss and dementia, to the extent that caregivers
would avoid disclosing the diagnosis to others.
132
South Asian caregivers in the research by Mackenzie (2006) felt that dementia was a
mental illness caused by spiritual influences; they described a stigma that is placed on
the entire family. These caregivers therefore attempted to conceal the condition for as
long as possible. This was particularly true for Pakistani caregivers who found
themselves becoming isolated from the community as a result.
Yet in contrast, research with Bangladeshi familial caregivers suggested that
participants did not feel that dementia was caused by bad deeds or previous sins, and
instead recognised dementia as a medical condition, once it had been diagnosed
(Hossain and Khan 2019). Only one participant felt that dementia was ‘given’ by
Allah (God), as well as other illnesses or successes in life. Additionally, the
Bangladeshi familial caregivers reported no stigma associated with dementia or
following a diagnosis of dementia, with family caregivers stating that dementia could
happen to anyone and they felt that the Bangladeshi community was sympathetic
towards both the person with dementia and the caregivers (Hossain and Khan 2019).
This has important implications as research with South Asian caregivers discussed
how caregivers who felt able to disclose a dementia diagnosis to others, said that the
support enabled them to cope with their caregiving role (Bowes and Wilkinson 2003).
The differences identified could be indicative of cultural variances within the South
Asian communities, and hence a further argument for not merging experiences of all
Asian caregivers. However a limitation of the research by Hossain and Khan (2019) is
the relatively small sample size of six caregivers, so further research will be needed to
understand if similar themes are identified with other BME caregivers.
In line with the idea of shame and stigma, some research has considered the impact of
an interpreter during the interview and how this could impact on the interview
133
content. For example, participants could be less likely to disclose information if they
are worried about being judged by the interpreter or if the interpreter lives within the
same community. Adamson and Donovan (2005) discussed how they had considered
the relationship between the interviewee and interpreter. The researchers had a
conversation with the interpreter following each interview to try and clarify any
possible misunderstandings.
Caregiver relationship
Several studies considered the relationship between the person with dementia and the
caregiver (Botsford, Clarke and Gibb 2012; Lawrence et al. 2008; Mackenzie 2006;
Adamson and Donovan 2005). Within their African-Caribbean and South Asian
sample, Adamson and Donovan (2005) found that the caregiver role was accepted as
part of their biography and an extension of the relationship. This was especially true
for spouse caregivers who spoke about the care they provide as being part of the
commitment of marriage; this group did not consider themselves to be caregivers.
However, there did appear to be cultural differences with African-Caribbean spouses
often referring to the marital vows, such as ‘in sickness and in health’, whereas South
Asian spouses suggested that they perceived their caregiver role as a cultural norm.
Again, this was supported in further research with South Asian familial caregivers
with the caregiving role considered obligatory (Bowes and Wilkinson 2003).
In the research by Mackenzie (2006) South Asian caregivers placed an emphasis on
the moral obligation to the family and to their faith with regards to caregiving. Caring
was viewed as a religious obligation, regardless of the religion the caregivers
practiced. However, there were subtle differences with Muslim caregivers describing
134
caring as a duty, whilst Sikh and Hindu caregivers discussed caring as a way of
repaying the person with dementia for previous acts of kindness.
Additionally, the research by Lawrence et al. (2008) proposes a traditional caregiver
ideology and a non-traditional caregiver ideology. The authors suggest that caregivers
who view their role as expected, natural and who can take rewards from their role
hold a traditional caregiver ideology. Whereas caregivers who feel that their role
conflicts with their expectations, is unnatural and feel that their life is on hold, fall
into a non-traditional caregiver ideology. In their research the majority of the South
Asian participants, half of the Black Caribbean participants and a minority of White
British participants held a traditional ideology.
Further research with an African Caribbean and Greek Cypriot sample, found that
there was an ongoing process of redefining the relationship when a partner is
diagnosed with dementia (Botsford, Clarke and Gibb 2012). This involved
recognising changes in their partner’s behaviour and adapting or responding in a
different way to their partner. The authors also suggested three different relationship
orientations: individual centredness, couple centredness and family centredness. It
was reported that Greek Cypriot participants were more likely to describe family
centredness, with African Caribbean participants describing either individual
centredness or couple centredness. However, we need to be careful about drawing
conclusions based on a limited sample (Greek Cypriot n=7, African Caribbean n=6).
In the research by Botsford, Clarke and Gibb (2012), it was recognised by the authors
that they do not share the same ethnic background as the participants, and they
wonder whether this may have had an impact on the relationship between researcher
and participant and therefore on their findings.
135
Bowes and Wilkinson (2003) also hint at differences between familial caregivers of
different relationships. In their research with South Asian caregivers, family
caregivers which were of the same generation as the person with dementia described
experiencing their own problems linked to their age and felt they were not as strong as
caregivers from a younger generation. They described caregiving as having a
detrimental impact on their own needs, whilst acknowledging that caregiving was a
responsibility they felt they had to honour.
Discussion
The current systematic review aimed to summarise and appraise the research on the
experience of BME familial caregivers of people with dementia, with a specific focus
on help seeking, stigma and change in caregiver relationship. In total thirteen studies
were identified and appraised. All papers used a qualitative methodology.
Summary of research
The papers identified several barriers to help seeking for BME communities. For
Asian caregivers, the barriers included cultural issues such as the need to hide
difficulties due to concern about what others think and a belief that using services is a
sign of failure (St. John 2004). Additionally, there was a suggestion that Asian
caregivers consider caregiving a familial duty and therefore do not seek support until
reaching a crisis point. This was also found to be present in research by Mukadam et
al. (2011) with BME communities including Black African or Caribbean and Chinese
caregivers.
The research also suggests that there is limited knowledge and awareness of dementia
in BME communities (Jolley et al. 2009; St. John 2004) with Asian familial
caregivers not being familiar with the symptoms of dementia or mistaking these as a
136
marker of old age. There are also misconceptions about dementia with some
caregivers viewing dementia as a mental illness (Mackenzie 2006) or a condition that
could be caused by evil spirits (Baghirathan et al. 2018). However, this was not
supported in recent research with Bangladeshi familial caregivers who viewed
dementia as a medical condition for which they would seek support (Hossain and
Khan 2019).
Research identified how stigma is associated with a dementia diagnosis in several
BME communities, such as African-Caribbean, Eastern European, Asian and Chinese
(Baghirathan et al. 2018; Jolley et al. 2009; Mackenzie 2006). For Eastern European
caregivers there was a pressure to keep matters private to avoid disapproval from
others in the community, and this was linked to isolation for caregivers (Mackenzie
2006). This was also evident for Chinese and South Asian caregivers who felt that
dementia would bring familial shame (Baghirathan et al. 2018; Mackenzie 2006). Yet,
in one study Bangladeshi caregivers felt there was no stigma associated with dementia
and that they could receive support from others in the Bangladeshi community
(Hossain and Khan 2019).
Studies also revealed information about the cultural perception of caregiver
responsibility. African Caribbean and South Asian caregivers considered caregiving a
responsibility they must honour (Adamson and Donovan 2005). However, there were
subtle differences with African Caribbean caregivers describing it as a commitment of
the marriage compared to South Asian caregivers who felt caregiving was obligatory
and a cultural norm (Mackenzie 2006; Bowes and Wilkinson 2003).
The one piece of research that focused exclusively on spousal caregivers suggested
that for African Caribbean and Greek Cypriot caregivers, there was an ongoing
137
process of redefining the relationship, where partners become tuned into the
behaviour of the person with dementia and continuously adapt to meet their needs
(Botsford, Clarke and Gibb 2012).
Limitations of the papers included in the review
Most research has grouped ethnicities widely e.g. ‘Asian’ or ‘South Asian’ (Adamson
2001; Adamson and Donovan 2005; Baghirathan et al. 2018; Bowes and Wilkinson
2003; Jolley et al. 2009; Lawrence et al. 2008; St. John 2004). Johl, Patterson and
Pearson (2016) suggest that within research, several ethnic sub communities are
grouped under an umbrella term of ‘South Asian’ to try and understand the experience
of Indian, Pakistani, Bangladeshi caregivers or alternatively Muslim, Sikh and Hindu
caregivers. This limits the ability to be able to compare and contrast the experience of
sub groups. However, several studies included in this review suggest that their
findings are themes which are worth exploring in other populations (different cultures
and sub cultures) to identify if the themes are transferable.
Vertovec (2007) suggests the need for dementia services to account for the ‘super
diversity’ of BME populations. Super diversity refers to the rising diversity in aspects
such as country of origin, socio-economic status as well as religious and cultural
traditions within a group. Individuals can hold beliefs that are not shared by other
members of the group. Insufficient consideration has been given to the possibility of
intragroup diversity, with homogeneity within ethnic minorities being assumed
instead (Uppal and Bonas 2014). Variations in the history, culture and religion of
groups can impact greatly on defining individual norms, values and experiences.
Therefore, it is important to also consider these factors when studying BME
communities.
138
Additionally, a methodological weakness of several papers was that research often
merges caregivers of all ages and familial relationships. This suggests that researchers
can often view these groups as homogenous and neglect to consider the differences of
caregivers based on age or relationship to the person with dementia. Both of these
factors could affect the caregiver’s experiences. Furthermore, two papers (Bowes and
Wilkinson 2003; St. John 2004) did not provide information on how many caregivers
took part in the study and failed to provide any demographic information for
participants. This makes it difficult to assess for potential bias in the recruitment of
the study.
Implications for clinical practice
The papers highlight areas where clinicians and practitioners could adapt their
practice for BME communities. As research suggests that the understanding of
dementia symptoms needs to improve, one implication would be for dementia
services to offer educational sessions to ethnic minority communities on the
differences between dementia in comparison to normal aging. For example,
workshops and dementia awareness sessions were successful at engaging with BME
communities in the research by St. John (2004). This could be one way to encourage
earlier help seeking.
Secondly, it seems that dementia education must also try to dispel some of the myths
or misconceptions associated with dementia, for example that dementia can be caused
by evil spirits. Whilst this may be a sensitive cultural barrier to broach, providing
information that dementia is a medical condition could help to break down some of
the shame associated with dementia. Additionally, it would be interesting to see if
early education could encourage beliefs that diagnosis is beneficial for intervention or
139
planning and does not mean that the caregiver is relinquishing full responsibility or
abandoning familial duty.
Furthermore, research by Mukadam et al. (2015) with South Asian adults without a
diagnosis of dementia, suggested that participants were unaware of the services that
are available for cognitive problems. One approach to meet this need is for services to
provide easily accessible information in a range of languages about the services
available for both caregivers and people with dementia, such as respite or caregiver
support groups.
Future research
A finding from the current review, which has also been previously identified (Johl,
Patterson and Pearson 2016) is that research in this field tends to focus on the female
caregiver experience and there is a lack of male perspectives in the caregiver
literature. This is important as a recent systematic review highlighted sex and gender
differences that exist amongst dementia caregivers in majority populations (Arbel,
Bingham and Dawson 2019). The review noted the lack of studies considering male
caregiver experiences in ethnic minorities suggesting that at present we do not
currently have a clear understanding of the male caregiver experience in BME
communities, highlighting the need for future research in this area.
Additionally, there was only one study that considered the experience of spousal
caregivers exclusively in dementia (Botsford, Clarke and Gibb 2012). This review has
highlighted that the caregiver relationship is an important aspect of caregiving and it
would be worthwhile to consider any differences in the spousal caregiver experience
compared to child caregivers. This is especially relevant as studies hinted that African
Caribbean spouses often referred to responsibility related to marital vows and South
140
Asian spouses discussed caregiving as a perceived cultural norm. It may be
worthwhile for future research to expand on these differences.
Conclusion
This systematic literature review aimed to summarise and appraise the research
available on the experience of familial caregivers in dementia from BME
communities. Thirteen papers were reviewed in total. Findings highlight that help
seeking was often delayed in BME communities for several reasons including a lack
of information and awareness of dementia symptoms, a lack of information about the
role of the GP and a belief services could not understand or respect cultural
differences. The role of shame and stigma was also considered and appeared to
prevent caregivers from seeking support from others in the community, for fear of
bringing shame on the family. Additionally, some BME groups considered caregiving
as an extension of a relationship (therefore not considering themselves as caregivers)
or it was perceived as a cultural norm that family should take responsibility.
There are several limitations reported within the studies which would be important for
future research to address. It was consistently reported that the research is lacking the
male and spousal caregiver perspective, suggesting that we do not have an
understanding whether findings to date can be applied to male spousal caregivers
within BME groups. Additionally, research often groups ethnicities widely for
example ‘South Asian’ leading to possible generalisations.
141
142
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Wittenberg R, Adelaja B, Hu B, King D, Rehill A and Salimkumar D (2014)
Dementia UK: Update Second Edition. London, UK: Alzheimer’s Society.
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Purandare N, Luthra V, Swarbrick C and Burns A (2007) Knowledge of dementia
among South Asian (Indian) older people in Manchester, UK. International Journal
of Geriatric Psychiatry, 22, 8, 777-81.
Ring NA, Ritchie K, Mandava L and Jepson R (2011) [online]. A guide to
synthesising qualitative research for researchers undertaking health technology
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veLiterature_DEC10%5B1%5D.pdf Accessed: 06/06/2019.
Roth DL, Haley WE, Owen JE, Clay OJ and Goode KT (2001) Latent growth models
of the longitudinal effects of dementia caregiving: a comparison of African American
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St. John T (2004) Hidden shame - a review of the needs of Asian elders with dementia
and their carers in a Kent community. Journal of Integrated Care, 12, 3, 20-26.
Tennstedt SL, Crawford S and McKinlay JB (1993) Determining the pattern of
community care: Is co-residence more important than caregiver relationship? Journal
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in the Sikh community. Mental Health, Religion & Culture, 17, 4, 400-14.
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MRP Literature Review Appendices
Appendix 1 - Guidelines for authors
Ageing & SocietySubmission Ageing and Society is an interdisciplinary and international journal devoted to the understanding of human ageing and the circumstances of older people in their social and cultural contexts. We invite original contributions that fall within this broad remit and which have empirical, theoretical, methodological or policy relevance. All submissions, regardless of category, are subject to blind peer-review. Authors are reminded of the requirement to avoid ageist and other inappropriate language and to avoid the stereotypical representation of individuals or groups.
All papers must be submitted using Manuscript Central through the Journal’s website at: http://journals.cambridge.org/aso.
All books for review should be sent to: Caroline Norrie and Kritika Samsi, Social Care Workforce Research Unit, King's College London, Strand, London, WC2R 2LS
All submissions must conform to the submission guidelines outlined below. Failure to do so may result in the submission being rejected.
Article categories Research articles Research articles must contain between 3,000 and 9,000 words, excluding the abstract and references. Most papers usually have the following sections in sequence: Title page, Abstract (200-300 words), Keywords (three to eight), Main text, Statement of ethical approval as appropriate, Statement of funding, Declaration of contribution of authors, Statement of conflict of interest, Acknowledgements, Notes, References, Correspondence address for corresponding author. However authors have the flexibility to organise the main text of article into the format that best suits the topic under consideration.
Forum articles In addition to research papers, the Journal welcomes critical/reflective commentaries on contemporary research, policy, theory or methods relevant to the Journal’s readers. These articles reflect a viewpoint of the author and they may form part of an ongoing debate. These articles should contain 2,000-5,000 words. There is no preset organisational structure.
Special issues Proposals are invited for special issues that fall within the remit of the journal. Ageing & Society especially looks for proposals that show originality and which address topical themes. Proposals which involve authors from a range of disciplines and/or countries are particularly encouraged and the special issue must demonstrate clear added value in advancing an understanding of ageing and later life that is more than the sum of the individual papers. Proposals should be submitted by the co-ordinating Guest Editors by email to the Editor, Christina Victor: [email protected]
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Proposals are reviewed twice a year, for further information see the guidelines for special issue proposals available at:
http://journals.cambridge.org/images/fileUpload/images/A&S_Special_Issue_Proposals.pdf
It is Ageing & Society practice that all papers in special issues are subject to blind peer review, undergoing the same refereeing process as all other submissions, led by the Ageing & Society Editor and co-ordinated by the journal’s Editorial Assistant. The final decision whether to publish individual papers submitted as part of a special issues remains with the Editor.
Submission requirements Exclusive submission to Ageing & Society
Submission of the article to Ageing & Society is taken to imply that it has not been published elsewhere nor is it being considered for publication elsewhere. Authors will be required to confirm on submission of their article that the manuscript has been submitted solely to this journal and is not published, in press, or submitted elsewhere. Where the submitted manuscript is based on a working paper (or similar draft document published online), the working paper should be acknowledged and the author should include a statement with the submitted manuscript explaining how it differs from the working paper. Articles which are identical to a working paper or similar draft document published online will not be accepted for publication in Ageing & Society.
Appropriateness for Ageing Society
All submissions must fall within the remit of the journal, as described at the beginning of this document.
All manuscripts must meet the submission requirements set out in this document, closely following the instructions in the ‘Preparation of manuscripts’, ‘Citation of references’ and ‘Table and Figures’ sections below.
Authors are requested to bear in mind the multi-disciplinary and international nature of the readership when writing their contribution. Care must be taken to draw out the implications of the analysis for readers in other fields, other countries, and other disciplines. Papers that report empirical findings must detail the research methodology.
The stereotypical presentation of individuals or social groupings, including the use of ageist language, must be avoided.
Submission documents
All submissions should include:
A copy of the complete text of the manuscript, with a title page including the title of the article and the author(s)’ names, affiliations and postal and email addresses.
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A copy of the complete text minus the title page, acknowledgements, and any running headers of author names, to allow blinded review.
Named authors
Papers with more than one author must designate a corresponding author. The corresponding author should be the person with full responsibility for the work and/or the conduct of the study, had access to the data, and controlled the decision to publish. The corresponding author must confirm that co-authors have read the paper and are aware of its submission. Full contact details for all co-authors should be submitted via Manuscript Central.
All named authors for an article must have made a substantial contribution to: (a) the conception and design, or analysis and interpretation of data; (b) the drafting of the article or revising it critically for important intellectual content and (c) approval of the version to be published. All these conditions must all be met. Participation solely in the acquisition of funding or the collection of data does not, of itself, justify authorship.
Peer-review process
The corresponding author should prepare (a) a complete text and (b) complete text minus the title page, acknowledgements, and any running headers of author names, to allow blinded review. References to previous papers of the authors must not be blinded, neither in the text nor in the list of references.
Papers are peer-reviewed. Authors may be asked to submit a revised version of the original paper. In any revised submission, we prefer you to indicate these revisions using track changes where appropriate. An accompanying letter from the corresponding author should outline your changes, and comments on advice that you have chosen not to accept. The corresponding author should confirm that co-authors have agreed to any changes made.
Ethical considerations
Where the paper reports original research, confirmation must be given that ethical guidelines have been met, including adherence to the legal requirements of the study country. For empirical work conducted with human subjects authors must provide evidence that the study was subject to the appropriate level of ethical review (e.g. university, hospital etc.) or provide a statement indicating that it was not required. Authors must state the full name of the body providing the favourable ethical review and reference number as appropriate.
Declaration of funding
A declaration of sources of funding must be provided if appropriate. Authors must state the full official name of the funding body and grant numbers specified. Authors must specify what role, if any, their financial sponsors played in the design, execution, analysis and interpretation of data, or writing of the study. If they played no role this should be stated.
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Copyright
Contributors of articles or reviews accepted for publication will be asked to assign copyright, on certain conditions, to Cambridge University Press.
Open Access
Please visit http://journals.cambridge.org/openaccess for information on our open access policies, compliance with major funding bodies, and guidelines on depositing your manuscript in an institutional repository.
Preparation of manuscripts All contributions (articles, reviews and all types of review articles) should be typed double-spaced with at least one-inch or two-centimetre margins throughout (including notes and the list of references).
Most research articles usually have the following sections in sequence: Title page, Abstract (200-300 words), Keywords (three to eight), Main text, Statement of ethical approval as appropriate, Statement of funding, Declaration of contribution of authors, Statement of conflict of interest, Acknowledgements, Notes, References, Correspondence address for corresponding author.
The title page should give the title of the article and the author(s)’ names, affiliations and postal and email addresses. When composing the title of your article, please give consideration to how the title would be shortened to appear as a running head in final version of the Journal.
The tables and figures should be presented one to a page in sequence at the end of the paper. Black and white photographs may be submitted where they are integral to the content of the paper. Charges apply for all colour figures that appear in the print version of the Journal (see below for further details).
Authors are asked to follow the current style conventions as closely as possible. Please consult a very recent issue of the journal. In particular, please note the following:
Use the British variants of English-language spelling, so ‘ageing’, not ‘aging’. First level headers are in bold, sentence case and left justified Second level headers are in italic (not bold), sentence case and left justified Do not number paragraphs or sections. Avoid very short (particularly one
sentence) paragraphs. Do not use bold text in the text at all. For emphasis, use italic. In the main text, the numbers one to ten should be written as words, but for
higher numbers the numerals (e.g. 11, 23, 364) should be used. All acronyms must be expanded on first use, even EU, USA, UK or UN, for
those which are commonplace in one country are not in others. Do not use footnotes. Endnotes are permitted for technical and information
details (including arrays of test statistics) that distract from the main argument. Endnote superscripts should be placed outside, not inside a punctuation mark (so.3 not4.).
Write per cent (not %) except in illustrative brackets.
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Authors, particularly those whose first language is not English, may wish to have their English-language manuscripts checked by a native speaker before submission. This is optional, but may help to ensure that the academic content of the paper is fully understood by the editor and any reviewers. We list a number of third-party services specialising in language editing and/or translation, and suggest that authors contact as appropriate:
http://journals.cambridge.org/action/stream?pageId=8728&level=2&menu=Authors&pageId=3608
Please note that the use of any of these services is voluntary, and at the author's own expense. Use of these services does not guarantee that the manuscript will be accepted for publication, nor does it restrict the author to submitting to a Cambridge published journal.
Citation of references Contributors may follow either the standard conventions: (a) in-text citation of sources (author/date system); or (b) citations in notes.
(a) In-text citation. Give author's surname, date of publication and page references (if any) in parentheses in the body of the text, e.g. (Cole 1992: 251). For references with one to three authors, all authors should be named (Black, Green and Brown 2003). For references with four or more authors, the following form is required: (Brown et al. 2003). Note that all authors must be named in the list of references, and et al. is not permitted in the list. A complete list of references cited, arranged alphabetically by authors’ surname, should be typed double-spaced at the end of the article in the form:
Balsa AI, Homer JF, Fleming MF and French MT (2008) Alcohol consumption and health among elders. The Gerontologist 48, 5, 622–636.
Bergmann MM, Rehm J, Klipstein-Grobusch K, Boeing H, Schütze M, Drogan D, Overvad K, Tjønneland A, Halkjær J, Fagherazzi G, Boutron-Ruault M-C, Clavel-Chapelon F, Teucher B, Kaaks R, Trichopoulou A, Benetou V, Trichopoulos D, Palli D, Pala V, Tumino R, Vineis P, Beulens JWJ, Redondo M-L, Duell EJ, Molina-Montes E, Navarro C, Barricarte A, Arriola L, Allen NE, Crowe FL, Tee Khaw K, Wareham N, Romaguera D, Wark PA, Romieu I, Nunes L, Riboli E and Ferrari P (2013) The association of pattern of lifetime alcohol use and cause of death in the European prospective investigation into cancer and nutrition (EPIC) study. International Journal of Epidemiology 42, 6, 1772–1790.
(b) Citation in notes. References should be given in notes, numbered consecutively through the typescript with raised numbers, and typed double-spaced at the end of the article. Full publication details in the same format as (a) should be given in the notes when a work is first cited; for second and subsequent citations a short form may be used.
For both styles of reference lists, please particularly note the following: Authors are requested to minimise the citation of unpublished working and
conference papers (because they are difficult for readers to acquire). Where they are cited, complete details of the title of the conference, the convening organisation, the location and the date of the presentation must be given.
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Papers that have been submitted to journals but on which no decision has been heard must not be cited.
Titles of Books and Journals are in Title Case and Italic. Titles of papers, articles and book chapters are in sentence case and not
italicised. Please note carefully that part or issue numbers should be given for journal
paper citations, that page ranges for book chapters should always be given and should be condensed, so 335-64 not 335-364, and S221-9 not S221-229.
Please use (eds) and (ed.) where required (no capitals, full stop after truncated ed. but not compressed eds).
Citation of Internet pages or publications that are available online Give authors, date, title, publisher (or name of host website) as for a printed publication. Then follow with … Available online at … full Internet address [Accessed date]. For example:
Belfield C, Cribb J, Hood A and Joyce R (2014) Living Standards, Poverty and Inequality in the UK: 2014. Institute for Fiscal Studies, London. Available online at http://www.ifs.org.uk/publications/7274 [Accessed 30 July 2015].
Tables and figures There should never be more than ten tables and figures in aggregate, and only in exceptional circumstances more than eight. Please do not use Boxes or Appendices. Present all illustrative material as tables or figures. Please indicate in the text where approximately the Table and Figures should appear using the device < Insert Table 1 about here > on its own line. For figures generated by Excel, please send the original file (rather than a ‘picture’ version) so that the figures can be copy-edited.
Tables and figures should be clearly laid out on separate pages, numbered consecutively, and designed to fit a printed page of 228 x 152 mm (actual text area 184 x 114 mm). Titles should be typed above the body of the table, with an initial capital only for the first word and proper names and italicised or underlined (for italics). Vertical lines should not be used and horizontal lines should be used only at the top and bottom of the table and below column headings. Authors are asked to give particular attention to the title and to column and row labels (they are often poorly selected, incomprehensible or inadequate). All multiple word labels should be in sentence case. Short titles that concentrate on the subject of the table are recommended. Technical or methodological details (such as sample size or type of statistic) should be described in the labels or in table notes. Spurious accuracy should be avoided: most statistics justify or require only one decimal place.
Figures should also be provided on separate pages and numbered consecutively. For each figure, the caption should be below and in sentence case. Separate lists of captions are not required.
Colour figures can be submitted to Ageing & Society, but charges apply for all colour figures that appear in the print version of the journal. At the time of submission, contributors should clearly state whether their figures should appear in colour in the online version only, or whether they should appear in colour online and in the print
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version. There is no charge for including colour figures in the online version of the Journal but it must be clear that colour is needed to enhance the meaning of the figure, rather than simply being for aesthetic purposes. If you request colour figures in the printed version, you will be contacted by CCC-Rightslink who are acting on our behalf to collect Author Charges. Please follow their instructions in order to avoid any delay in the publication of your article.
Figures should be provided in the following formats: For colour halftones: Tiff or Jpeg format at 300 dpi (dots per inch) at their
final printing size. For line work or line work/tone: EPS format with any halftone element at 300dpi final printing size.
Proofs and offprints Proofs will be sent to the corresponding author as a PDF via email for final proof reading. The proofs should be checked and any corrections returned within 2 days of receipt. The publisher reserves the right to charge authors for excessive correction of non-typographical errors.
Authors will receive a PDF of the published paper and a copy of the Journal, to go to the corresponding author. If offprints are required, these must be purchased at proof stage.
Last updated 12th July 2018
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Appendix 2 – The CASP checklist
Qualitative Quality Assessment Tool Paper ratings1. Was there a clear statement of the aims of the research? KP Key Paper
2. Is a qualitative methodology appropriate? SAT Satisfactory Paper
3. Was the research design appropriate to address the aims of the research?
4. Was the recruitment strategy appropriate to the aims of the research?
5. Was the data collected in a way that addressed the research issue?
6. Has the relationship between researcher and participants been adequately considered?
7. Have ethical issues been taken into consideration?
8. Was the data analysis sufficiently rigorous?
9. Is there a clear statement of findings?
10. How valuable is the research?
Authors Q1 Q2 Q3 Q4 Q5 Q6 Q7 Q8 Q9 Q10 Overall rating
Adamson Yes Yes Yes Yes Yes Yes Can’t Yes Yes Yes 9/10
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Authors Q1 Q2 Q3 Q4 Q5 Q6 Q7 Q8 Q9 Q10 Overall rating
(2001) tell KP
Adamson and Donovan (2005)
Yes Yes Yes Yes Yes Can’t tell
Yes Yes Yes Yes 9/10KP
Baghirathan, Cheston, Hui, Chacon, Shears and Currie (2018)
Yes Yes Yes Yes Yes Can’t tell
Yes Yes Yes Yes 9/10KP
Botsford, Clarke and Gibb (2012)
Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes 10/10KP
Bowes and Wilkinson (2003)
Yes Yes Yes Yes Yes Can’t tell
Yes Can’t tell
Yes Yes 8/10KP
Hossain and Khan (2019)
Supervisor’s Rating
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Can’t tell
Yes
Yes
Yes
Yes
10/10KP
9/10 KP
Jolley, Moreland, Read, Kaur, Jutlla and Clark (2009)
Yes Yes Yes Can’t tell
Yes Can’t tell
Can’t tell
Can’t tell
Yes Yes 7/10SAT
Jutlla(2015)
Supervisor’s Rating
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Can’t
Yes
Yes
Can’t tell
Can’t
Can’t tell
Can’t
Yes
Yes
Yes
Yes
Yes
Yes
8/10KP
7/10
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Authors Q1 Q2 Q3 Q4 Q5 Q6 Q7 Q8 Q9 Q10 Overall rating
tell tell tell SATJutlla and Moreland (2009)
Yes Yes Yes Yes Yes Can’t tell
Can’t tell
Yes Yes Yes 8/10KP
Lawrence, Murray, Samsi and Banerjee (2008)
Yes Yes Yes Yes Yes Can’t tell
Can’t tell
Yes Yes Yes 8/10KP
Mackenzie (2006)
Yes Yes Yes Yes Yes Can’t tell
Can’t tell
Yes Yes Yes 8/10KP
Mukadam, Cooper, Basit and Livingston (2011)
Yes Yes Yes Yes Yes Can’t tell
Yes Yes Yes Yes 9/10KP
St. John (2004)
Yes Yes Yes Yes Yes Can’t tell
Can’t tell
Can’t tell
Yes Yes 7/10SAT
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Part 3: Summary of Clinical Experience
Year One
Adult Community Mental Health Service (1 year)
During my first year of clinical training I worked within an adult mental health community
team for adults aged 18-65 who had severe and enduring mental conditions. I gained
extensive experience of delivering evidence based psychological interventions, primarily
Cognitive Behavioural Therapy (CBT) with adults presenting with a range of complex
problems. This included psychosis, bipolar disorder, depression, social anxiety, generalized
anxiety disorder and body dysmorphic disorder. I was also involved in facilitating an eight-
week education and support group for those who had received a diagnosis of Bipolar
Disorder.
In addition to therapeutic interventions I was also involved in conducting initial multi-
disciplinary assessments, alongside mental health nurses, psychiatrists and other
psychologists. These would often involve the use of standardized assessment measures and
screening questionnaires as well as formal cognitive tests including the WAIS. I delivered
training to a large group of carers on the role of psychology in Community Mental Health
Teams. I completed a service evaluation during the placement, collecting data from staff who
worked in the service, on their training needs when supporting service users who identify as
LGBT.
Year Two
Children and Adolescent Mental Health Service (6 months)
During this placement, I worked in a community mental health team for young people aged
5-18. I used a range of models to inform my assessments and interventions including CBT,
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narrative therapy, systemic approaches and behavioural approaches. The young people that I
worked with had difficulties associated with low mood, low self-esteem, panic, Obsessive
Compulsive Disorder (OCD), Generalized Anxiety Disorder (GAD) and emotional regulation
difficulties. Interventions comprised of individual, family-based and parental work. I
completed two neuropsychological tests to better understand the children’s cognitive abilities
and provided guidance on how best to support them. I had multiple opportunities to formulate
with wider staffing groups, offer consultation, and advocate for my client’s best interests. I
facilitated training to the staff team on the use of the WISC-V which had recently been
updated.
Learning Disability Community Team (6 months)
In my learning disability placement, I worked within a community service which was a joint
health and social care team. I delivered 1:1 therapy, which was always adapted in order to
make it accessible and used a range of approaches including CBT for service users with
anxiety, panic, anger and depression. I completed a range of formal assessments including an
autism assessment, baseline dementia assessment for people with Down’s Syndrome and a
learning disability assessment. In addition to formal reports I wrote client accessible reports. I
offered systemic consultations to residential care homes for managing challenging behaviour
and would use integrative assessments and observations to develop Positive Behavioural
Support (PBS) plans.
Year Three
Specialist Placement – Looked After Children Service (6 months)
During this placement, I worked in a specialist Looked After Children Service based in a
Local Authority. I ran therapeutic consultation clinics and supervision for social workers and
foster carers with the aim of reducing placement breakdowns and consulted to children's
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homes, foster cares and schools, offering interventions and strategies based on attachment,
solution focused and metalization models. I attended training on Adolescent Metalization-
Based Integrative Treatment (AMBIT) which is a framework used to address the chaotic and
complex systems and to reduce anxiety within these systems. I also delivered a training day
to 30 multi-agency professionals on ‘responding to self-harm’.
Older Adult Community Mental Health Service (6 months)
I worked with older adults aged 65 + in a specialist team within a community mental health
setting. I supported clients who had a diagnosis of dementia and often presented with
behaviours that challenge. The majority of clients that I worked with were residing in a
nursing or residential home. I drew upon therapeutic models such as PBS, CBT, Cognitive
Analytical Therapy (CAT), whilst also integrating attachment theory into my work.
The work often involved joint working with other professionals such as nurses, associate
practitioners, psychiatrists, paid carers in residential homes in addition to working with the
service users’ family. I completed two neuropsychological assessments to assess for dementia
or mild cognitive impairments. I liaised and offered consultation and presented formulations
for many residential homes. I presented on ‘Trauma Informed Care’ to the psychologists
working across the borough.
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Part 4: Table of Assessments Completed During Training
Year I AssessmentsASSESSMENT TITLE
WAIS WAIS Interpretation (online assessment)Practice Report of Clinical Activity
A cognitive- behavioural assessment and formulation of a male in late adolescence presenting with delusional beliefs, anxiety and low mood.
Audio Recording of Clinical Activity with Critical Appraisal
Audio and Critical Appraisal of a Cognitive Behavioural Therapy (CBT) session for a female in her forties presenting with depression following first episode psychosis.
Report of Clinical Activity N=1
Assessment and Cognitive Behaviour Therapy (CBT) for a female in her early forties presenting with low mood and anxiety following a psychotic episode.
Major Research Project Literature Survey
The role of culture in help seeking and caregiver burden within dementia.
Major Research Project Proposal
The experience of male carers in dementia from Black and Minority Ethnic (BME) communities.
Service-Related Project Evaluating the training needs of staff to provide recommendations for a LGBT* training package.
Year II AssessmentsASSESSMENT TITLE
Report of Clinical Activity
Assessment and an integrative intervention for a male in early adolescence presenting with OCD symptoms.
PPLD Process Account A reflective account on attending a Personal and Professional Development (PPD) group during Clinical Psychology training.
Year III Assessments ASSESSMENT TITLE
Presentation of Clinical Activity
Development of a Positive Behavioural Support (PBS) plan for a client in her 50’s with behaviour that challenges.
Major Research Project Literature Review
A review of the literature on the experiences of Black and Minority Ethnic (BME) familial caregivers of a person with dementia in the United Kingdom (UK)
Major Research Project Empirical Paper
Exploring the experiences of British Indian male caregivers of a partner with dementia
Report of Clinical Activity – Formal Assessment
A learning disability assessment for a male in his early fifties.
Reflective Portfolio Reflective Portfolio
