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A Study of the Asian Community in North West Kent Culture and Care in Dementia Dr. Viniti Seabrooke & Alisoun Milne Alzheimer’s & Dementia S U P P O R T S E R V I C E S
A Study of the Asian Community inNorth West Kent
Culture and Care in Dementia
Dr. Viniti Seabrooke & Alisoun Milne
Alzheimer’s & DementiaS U P P O R T S E R V I C E S
Culture and Care in DementiaA Study of the Asian Community in North West Kent
A Report by:
Alzheimer’s and Dementia Support Services
Funded by:
The Mental Health Foundation
Authors:
Dr. Viniti Seabrooke is Project Researcher for Alzheimer’s & Dementia Support Services, Northfleet, Kent, DA11 8JY.
Alisoun Milne is Senior Lecturer in Social Gerontology, Tizard Centre, University of Kent and Programme Consultant, The Mental Health Foundation.
January 2004
© Alzheimer’s and DementiaSupport Services, 2004
Limited extracts from the text maybe reproduced provided the sourceis acknowledged.
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Contents
5 Acknowledgements
6 Foreword
7 Executive Summary
10 Section 1: Introduction
10 The National Policy Context11 The Research Context14 The Local Context
16 Section 2: Aims and Methods
16 Aims & Objectives 16 Methodology
18 Section 3: Stages of the Project
18 Making Links and Mapping Services18 Publicity and Making Links19 Service Planning and Commissioning in North West Kent 19 Mapping Services
19 Exploring the Dementia Related Needs of the Asian Community19 The Fieldwork 19 Interviews with General Practitioners20 Interviews with Health and Social Care Providers20 Interviews with Carers20 Workshops and Focus Groups 21 Telephone Survey of Residential and Nursing Home Managers
22 Section 4: Findings and Discussion
22 Mapping Services
23 Mapping the Mental Health Needs of the Asian Community23 Data from General Practitioners26 Data from Service Providers29 Data from Carers32 Data from Workshops and Focus Groups36 Data from Telephone Survey of Residential and Nursing Homes
36 Discussion 36 Understanding of Dementia37 Cultural Beliefs37 Diagnosis of Dementia38 Access to Services39 Support Needs of Carers39 Inter-generational Conflict40 Raising Awareness about Dementia41 Service Development
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42 Section 5: Implications and Conclusions
42 Commissioning Dementia Services for the Asian Population in NW Kent43 Training Issues for Managers and Service Providers
45 Reflections on the Project
46 Conclusion
47 Appendix 1The Project Plan
49 Appendix 2Guidance Questions: Interviews with General Practitioners
50 Appendix 3Guidance Questions: Interviews with Health Professionals and Service Providers
51 Appendix 4Guidance Questions: Interviews with Carers
52 Appendix 5Workshop Publicity
53 References
The authors would like to thank the Mental Health Foundation for funding this project and Alzheimer’sand Dementia Support Services for ‘housing’ the project. In particular, we would like to thank CarolSmith and Pam Schiffer for their expert advice and continued support throughout the project.
We are also grateful to the many staff and workers in statutory, voluntary and other organisations whogave their time to inform and support the project, particularly those staff of the local Asian DayCentres who also gave time to ensure the accuracy of translated materials. Without the cooperationof these organisations, the project could not have identified many of the people who wereinterviewed and contributed to the research study.
We would also like to thank Alzheimer’s Concern Ealing, for providing the video ‘Dementia Ki Hai’ andin particular, Kulbir Gill for her expert advice in supporting this project. Finally, we would like to thankthe many service users and carers who willingly shared their stories and experiences to make thisproject worthwhile.
Viniti SeabrookeAlisoun Milne
Printed by: Hartley Reproductions Ltd
217 London Road, Greenhithe, Kent DA9 9DQ
Tel: 01322 287676
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Acknowledgements
The Asian population in the UK is ageing and increasing numbers of older Asian people aredeveloping dementia. Yet their uptake of mainstream services remains very low. The need to provideculturally appropriate services is pressing. Also pressing is the need to raise awareness among Asiancommunities that the quality of life of dementia patients and their carers can be greatly improved, byaccepting help and taking up services from local providers.
The project described in this report focused on the specific needs of the Asian community in NorthWest Kent. This enabled the project to reach Asian elders and their families, care workers, GPs andother related professionals to build a detailed and revealing picture of dementia-related need and theconceptualisation of dementia in the Asian community, and identify ways forward in providingappropriate dementia care.
But the findings in this report will have powerful resonance far beyond the local area. One of thespecific aims of the National Service Framework for Older People is to facilitate early diagnosis ofdementia, as it ‘gives access to treatment, allows planning for future care, and helps individuals andfamilies come to terms with the prognosis’. Yet only now are policy and service planners beginning toconsider the dementia-related needs of Asian communities. The backdrop is complex and the taskchallenging.
Meeting these needs will require a coherent, focused, multi-agency approach, designed to educate,inform, engage and ensure access to appropriate services. Working in partnership with Asiancommunities is absolutely key to the success of the approach, including Black and minority ethnicworkers and service providers.
It is time for us as a society to develop a much stronger overall focus on early intervention in mentalillness and other chronic disease; not just to treat illness but also to maximise people’s ability to livedignified lives and enjoy basic rights.
Through its expanding programme of work around mental health & later life, the Foundation hopes tocontinue investment in ethnicity and dementia research and service development. This projectrepresents an excellent start to this work. The Foundation extends its gratitude to the highly skilledproject researcher Viniti Seabrooke, for her dedication to the project, to the Alzheimers & DementiaSupport Services Charity and in particular Carol Smith for supporting and ‘housing’ the project, andto Alisoun Milne, for her research expertise.
Dr Andrew McCullochChief ExecutiveThe Mental Health Foundation
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Foreword
Section 1: Introduction
This report outlines a research project to explorethe service related needs of Asian older peoplewith dementia and their carers in the Dartfordand Gravesham area of North West Kent (NWKent). It was conducted over two years fromFebruary 2002 to January 2004 and was basedat Alzheimer’s and Dementia Support Services(ADSS), a local dementia care charity. Theproject was funded by the Mental HealthFoundation.
National Context The under-representation of ethnic minoritypopulations in dementia services is a longstanding concern of researchers and serviceproviders. Service development is only nowcoming to terms with the fact that the populationsthat immigrated in the 1940’s are ageing andrequire dementia care.
Since the Audit Commission Forget-me-Notreviews of mental health services for older people,and the implementation of the National ServiceFramework for Older People, the Governmentrequires the National Health Service and localcouncils to develop protocols for the diagnosis,treatment and care of all patients in their area withdementia. This includes older people from ethnicminorities.
There is also a growing body of research evidencein this arena. This includes work on: the needs ofAsian family carers, how dementia is differentlyconceptualised in Asian communities and deficitsin mainstream and minority ethnic services.
The Ageing Population and Prevalence ofDementia in South Asian PopulationsThe UK population is ageing. By 2016 there will benearly 1.8 million ethnic minority elders (AgeConcern England, 2001).
As longevity is the most important risk factor fordeveloping Alzheimer’s disease - the mostcommon form of dementia - the incidence ofdementia is increasing in all ethnic groups,including the Asian population. Some Asian
populations are also at enhanced risk ofdeveloping vascular dementia due to theincreased incidence of diabetes and hypertension.
The Local Context Nearly 70% of the ethnic minority population inNW Kent reside in the Dartford and Graveshamarea. Census data evidences that the Asianpopulation forms the single largest ethnic group;most are of Punjabi Sikh origin.
This community first established in the 1940’s asa result of active recruitment by the BritishGovernment to offset post World War 2 labourshortages. The first settlers came from farmingfamilies in Punjab, North India. Recently, the areahas seen an influx of Asians from the Midlandsand the North. Community members tend to beclose and know each other well.
Section 2: Aims and Methods
AimsThe project’s key aims were to:• investigate the nature of dementia related
need amongst older people from the Asiancommunity and their families
• determine why so few Asians currently usedementia services
• explore what kinds of services they need and• raise awareness and knowledge about
dementia.
MethodologyThe project had the dual purpose of collectingdata for a research project, which would informservice development. As an exploratory study itdrew primarily upon action research andqualitative methods. These included semi-structured interviews, workshops and focusgroups. Data was analysed using a contentanalysis technique and categorised using agrounded theory approach.
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Executive Summary
Section 3: Stages of the Project
The project was conducted in four stages. The first focused on ‘Making Links and MappingServices’ with the Asian community and services,the second - ‘Exploring the Dementia RelatedNeeds of the Asian Community’ - incorporatedthe fieldwork, and the third and fourth stagesinvolved the presentation and analysis of findings.
Section 4: Findings and Discussion
Mapping ServicesAlthough a small number of older Asians usemainstream dementia services, particularlyhospital care, the key facilities accessed arethose provided for Black and minority ethnicpopulations. The most popular and ‘acceptable’service is day care for frail Asian elders. Whilstthis is culturally appropriate, it is not resourced tosupport people with dementia.
Mapping the Dementia Related Needs of theAsian Community Semi-structured interviews were conducted witha cross-section of respondents: a sample ofGPs, service providers and carers, also atelephone survey of care homes. These weresupplemented by a number of educational andawareness raising workshops, which attracted alarge mixed group of participants includingcommunity members, older Asians, carers andworkers.
Understanding of Dementia One of the most striking findings of this projectwas the lack of knowledge and understanding ofdementia in the Asian community. They do notconceptualise the illness as an organic diseaseor treatable illness. Asian languages do not havean equivalent word for dementia.
There is an almost universal negative perceptionof dementia; in its early stages, it is oftenregarded as a ‘normal’ part of ageing. Thisperception, coupled with the lack of knowledgeabout treatment and services, acts as a powerfulbarrier to both users and carers seeking support.
Cultural beliefs also play a role. Asians placegreat emphasis on the importance of being self-sufficient, portraying an image of well-being, andhiding mental health problems. Confidentiality isalso an issue, especially in a close - and rather
separate - community. Considerable stigma isassociated with acknowledging dementia.
Diagnosis of Dementia Recognising the symptoms of dementia is widelynoted as a prerequisite for diagnosing andtreating dementia in its early stages. Earlydetection is particularly important for those atrisk of vascular dementia because underlyingphysical causes are often treatable. The fact thatmany Asians come to the attention of services atan advanced stage of dementia severely limitsopportunities for preventive treatment. Carersalso tend to seek help later, which creates higherlevels of stress and reduces quality of life.
The lack of willingness amongst many Asianpatients and their families to acknowledgedementia, coupled with the pressures of theaverage GP workload, undermines the facilitationof early diagnosis. Additionally, there are oftenlanguage problems and standard ‘tests’ may notbe culturally appropriate.
Service Provision Service providers in the area are keen to supportan initiative to improve access to, and quality of,dementia care for older Asians and their families.This includes addressing the barriers betweenthe Asian community, service commissioners andproviders. Overall, participants attribute the lowuptake of services to a mismatch between thelinguistic, cultural and religious needs of theAsian community and provision.
Specific barriers to service usage amongstAsians are: lack of knowledge about dementiaand services, cultural differences, communicationand language difficulties, fear of breach ofconfidentiality and stigma. A lack of knowledgeamong service providers and managers aboutthe lifestyles, health, religious and cultural needsof Asian people is also a barrier. This raises theimportance of training.
Services developed for the Asian community andthose that employ Asian staff are accessed morereadily and are viewed as more appropriate byolder Asians and their carers. Medical servicesare also more acceptable than ‘mental health’ or ‘social care’ services.
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Very few care homes have Asian residents. There is some evidence to suggest thatplacements do not proceed as a consequence ofhomes not being able to accommodate thelinguistic and dietary needs of older Asians.
Support Needs of CarersEven though carers in the study were underenormous strain, they were unwilling to relinquishtheir caring role due to a commitment to familyduty.
The few services that were acceptable includelong-term hospital care and day care. There iswidespread condemnation of placing a relative ina care home. Many respondents commented onthe need for carers to have respite breaks.
Inter-generational ConflictSeveral respondents noted the increasing level ofconflict between the expectations of the oldergeneration and the aspirations of their youngersecond generation offspring. The resultant clashof cultures has undermined family bonds,assumptions about inter-generational reciprocityand traditional support structures. This includesa trend towards younger adults no longerremaining in the parental home post marriage.
Raising Awareness about Dementia The study evidenced the positive role and valueof awareness raising and educational workshops.The importance of balancing a need to takeaccount of the cultural and linguistic milieu whilstoffering clear information about dementia andservices cannot be overemphasised. Offeringworkshops in different settings to a range ofaudiences, over a significant period of time wasalso useful.
Section 5: Implications for Service Development
The ‘Culture and Care in Dementia’ projectmakes it clear that neither the Asian communitynor service providers in NW Kent are satisfiedwith current provision for older Asians withdementia or their carers.
In addition to sharing a common identity andculture with a service and/or its staff, otherimportant issues include: ease of access, greateravailability of culturally appropriate day andrespite care and a greater level of awareness
amongst service providers about the lifestyles,health, religious and cultural needs of olderAsians and their carers. Although it is appropriatefor new services to be integrated into existingprovision, it may be necessary to provideseparate services for the current generation ofolder Asians.
So far service planners have tended to bereactive to the needs of Asian carers; they needto become proactive and tackle the underlyingissues of resistance. Much work still needs to bedone to educate and inform the communityabout dementia, treatment and services, as wellas address barriers to service usage. If serviceplanning and commissioning is to be sensitive tothe needs and beliefs of the Asian community itis crucial to work in partnership with keymembers; this includes older people withdementia, their carers and service providers,particularly Asian staff. Whilst existing plans foradditional dementia services are positive, thereremain considerable deficits in the supportsystem for older Asians with dementia and theirfamilies.
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10
Culture and Care in Dementia:A Study of the Asian Community in North West Kent
Section 1: Introduction
This report outlines a research projectundertaken on behalf of Alzheimer’s andDementia Support Services (ADSS) and theMental Health Foundation to assess the needs ofAsian older people with dementia and theircarers within the Dartford and Gravesham areasof North West Kent (N.W. Kent). The work wascarried out over two years from February 2002 toJanuary 2004 and was funded by the MentalHealth Foundation as part of their DementiaResearch Initiative Programme. The project wasbased at ADSS, a registered charity and the leadprovider of practical and emotional support forlocal people with Alzheimer’s and otherdementias and their carers. The work wascommissioned as a result of concern about thelack of uptake of dementia services by the localAsian population and the awareness of a lack ofknowledge about the needs of this group inrelation to dementia services.
The report is presented in five sections. Section 1 offers the context for the project,Section 2 identifies the project’s aims andmethods, Section 3 outlines the stages, Section4 describes and discusses the research findingsand Section 5 explores the implications of thesefor services and dementia care for the Asiancommunity of NW Kent.
This first Section ‘sets the scene’ by offering a:• review of the national policy and research
context• summary of the dementia prevalence amongst
the Asian population in the UK and• introduction to the location and context of the
research study.
The National Policy Context
In 1989, the White Paper ‘Caring for People’recognised that people from different culturalbackgrounds have particular needs and that,since minority communities may have differentviews of what constitutes ‘community care’, it isimportant that service providers are sensitive tothese variations (Department of Health, 1989).
In 1998, the Social Services Inspectoratepublished a report entitled ‘They look after theirown, don’t they?’, which challenged the myththat ethnic minority families universally supportdependent members and highlighted a numberof service deficits (Department of Health, 1998).The inspection of community care services forBlack and minority ethnic (BME) older people ineight local authorities acknowledged the genuineattempts by social services departments toprovide services to minority ethnic older people,but found that the services were not necessarilyculturally appropriate and were marked by adistinct lack of choice: ‘... the variety of services available offering choiceto Black elders was limited and the Eurocentricnature of service provision meant many Blackelders had difficulty in having their needs met’(Department of Health, 1998).
In 1990, the ‘National Health Service and theCommunity Care Act’ provided a framework formajor changes to the delivery of health and socialcare to vulnerable older people (Department ofHealth, 1990). It provided an opportunity for thestatutory sector to engage with the independentsector and work in partnership with service usersand carers to identify their needs and developservices to meet them. After coming to power in1997, New Labour invested in a programme ofmodernisation for health and social care. A keyplank of this was ‘The NHS Plan 2000’ whichrequired NHS trusts and social servicesdepartments to define how they will meet thehealth and social care needs of local populations(Department of Health, 1998a). The developmentof comprehensive partnerships between socialservices, health agencies, communities, serviceusers, carers and the independent sectorunderpinned this initiative. It also placed particularemphasis on meeting the needs of marginalisedand minority groups and ensuring equality ofaccess to services, particularly for vulnerableadults, including those with dementia. This isreinforced by a specific focus on the needs ofminority ethnic older people by the Department of Health (Department of Health, 2002). Specificattention was paid to mental health services forolder people and their carers by the Audit
Commission ‘Forget-me-Not’ reviews of 2000and 2002. These highlighted considerablevariation in range and types of services and alack of coherence in dementia care; they alsoidentified a dearth of specialist services forethnic minorities (Audit Commission, 2000,2002).
In 2001, the ‘National Service Framework forOlder People’ was published; Standard 7 of thisdocument relates specifically to older people’smental health care (Department of Health,2001). The aim of Standard 7 is to promotegood mental health in older people and toeffectively and appropriately treat and supportthose older people with dementia and/ordepression. The Standard states: ‘Older people who have mental health problemsneed access to integrated mental healthservices, provided by the NHS and councils toensure effective diagnosis, treatment andsupport, for them and their carers.’ (Departmentof Health, 2001, p90).
The Standard also states that mental healthservices for older people should be able torespond effectively to individual needs, takingaccount of the social and cultural factorsaffecting treatment, recovery and support. The key interventions required for improvingprevention, care and treatment of mental healthproblems in old age are identified as:• promoting good mental health• early recognition and management of mental
health problems and• flexible access to specialist care when
required.
In relationship to older people from ethnicminorities, Standard 7 states: ‘Older people from Black and ethnic minoritycommunities need accessible and appropriatemental health services. Unfortunately, for anumber of reasons, services may be neitherreadily accessible nor fully appropriate.’(Department of Health, 2001, p90 7.3).
The Research Context
Of equal significance to social policy is the roleand relevance of research. The NW Kent projectwas informed and influenced by existingresearch evidence about:• the needs of Asian family carers
• how dementia is understood in Asiancommunities
• dementia services and support needs and• good practice.
The existing evidence base about South Asiancommunities is characterised by small studiesexploring the needs of local populations andlarger studies which include South Asian groupswithin a broader definition of ‘ethnic minoritypopulations’ (Ahmed and Atkin, 1996; Atkin andRollings, 1996; Bhugra and Bahl, 1999;Blakemore and Boneham, 1994). Material in thissection is drawn from both types of studies.
Care-giving in the Asian community The issues that commonly emerge from work oncare-giving in Asian communities are: thesignificant role of religion in underpinning theprominence of family care, filial responsibility, the stigma associated with mental illness and aneed to contain the person with dementia withinthe family, hidden from the wider community (Daker-White et al, 2002). The fact that formalresponsibility for care tends to reside with a malerelative and that actual care is delivered byfemale relatives, usually daughters or daughters-in-law, managing care alone, is also widely notedas is the fact that Asian carers appear toexperience very similar levels of stress and‘burden’ as their white counterparts(Chryssanthopoulou & Milne, in press). Further,the strongly held myth that ‘they look after theirown’ continues to be articulated in the literature(Adamson, 2001; Department of Health, 1998;Patel et al, 1998). This is interesting in light of the fact that there is increasing evidence thatchanges to the ‘traditional’ profile of Asianfamilies now mean that many older people livealone, with younger adults moving away for workand not being available to support their parents(Ahmed, 1996).
Understanding of Dementia One of the most serious challenges associatedwith developing appropriate responses to olderAsians with dementia is the use of terminologyand the conceptualisation of dementia by theAsian community (Braun and Browne, 1998;Dilworth-Anderson and Gibson, 1999, 2002). The word ‘dementia’ does not exist in any of theAsian languages; it is simply termed ‘pagal’, aterm meaning ‘mad’ and no distinction is madebetween organic and functional mental illness.
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Dementia is recognised as a particular form ofmadness linked to ageing and as such is ‘natural’and ‘untreatable’. Further, it is associated withstigma and shame (Milne 2002, 2003).
Another significant issue relates to earlydetection and diagnosis. Evidence suggests thatearly intervention can delay progression andimprove the symptoms, function and quality oflife of those affected (Milne et al, 2000; Wilkinsonand Milne, 2003). This is particularly the case forthose with a potential diagnosis of vasculardementia, as this is one of the few types ofdementia for which remedial risk factors exist.Early diagnosis of dementia generally starts athome with the recognition of symptoms by theperson themselves or their relatives.
Little attention has been paid to theconceptualisation of dementia by South Asianfamilies in the UK (Rait et al, 1996; Sabat, 2001).This is an important omission as, together withthe implications for potential treatment, carersunderstanding of dementia has been linked tocoping with caring (Graham et al, 1997).
Services & Support Needs The under-representation of people from ethnicminority groups in dementia services has beennoted by both researchers and service providers(Badger et al, 1988; Brownlie, 1991, Brownfootand Associates, 1998). Only now are policy andservice planning systems beginning to considerthe dementia related needs of Asian communities(Heer, 2001; Patel et al, 1998; Daker-White et al,2002).
Reasons for under-utilisation of services include: • differences in dementia prevalence rates• cultural deficiencies in the instruments used to
assess cognitive function• differing cultural perceptions of the signs and
symptoms of dementia• a younger age structure• the stigma attached to mental illness• a lack of knowledge about services and• a general reticence to use health and social
services stemming from a belief that they areculturally inappropriate.
Language issues, particularly in the case of firstgeneration migrants, have also been highlightedas an issue. One consequence of these barriersis that older Asians with dementia tend to come
to the attention of services at a late stage oftheir illness when little can be offered by way ofpreventive treatment or support (Bowes andDar, 2000; Katbamna et al, 1997).
Family carers of older Asians with dementia alsoappear reluctant to seek formal support; eventhose supporting relatives with very advanceddementia tend not to receive any input fromservices (Atkin, 1992; Baxter, 1988). Thisappears to be due to family and communityresistance to getting help from ‘outsiders’ aswell as the reasons already identified (Da Silva,2001). Fear of services is particularly acute for‘psychiatric’ or mental health services; generic services such as primary care or daycare for physically frail elders are moreacceptable (Patel and Mizra, 2000).
Although there is much debate about whether itis better to invest in developing specialistservices for Asian elders, this specific issueremains unexplored in research. What is clearhowever is that older Asians want services theycan ‘rely on and that provide good quality care,preferably staffed by people able to meet theparticular needs of users in terms of gender ofcarers, skin/hair care and diet’ (Adamson, 2001).
Services specifically developed for the Asiancommunity that are staffed by people whospeak the same language as the older person,serve culturally appropriate food and takeaccount of religious and cultural practices andfestivals are particularly valued by care-givers(Department of Health, 1998). In the US it hasbeen demonstrated that where mainstreamservices have matched users with staffaccording to ethnicity and language, useroutcomes are improved (Braun and Browne,1998). Manthorpe (1994) has argued forspecialist reminiscence services for Asian elderswho tend not to speak English or revert to theirlanguage of origin when they develop dementia.
Patel et al (1998) have conducted a review ofservices and research in three Europeancountries. They argue that the service solutionlies in investing in community minority ethnicorganisations to provide dementia services.
They further suggest that these need notbecome exclusive and should aim to meet theneeds of a mixed group of users and carers.
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There are of course considerable differencesbetween communities and situations (Milne, 2003;Lampley-Dallas, 2002). For example in Ealing,West London where the well integrated Asiancommunity has existed since the 1940’s, olderAsians with dementia access mainstream servicesas well as specialist dementia services andservices developed specifically for the Asiancommunity. However in most areas of the UK,Asian communities tend to be geographicallyand/or culturally isolated and do not use socialservices; primary care and hospital care servicesare more acceptable although under-used inrelation to dementia (Shadlen, 2002).
Good Practice There is a limited evidence base focus on ‘goodpractice’ in dementia care for Asian elders. Oneissue relates to the importance of outreach workto underpin service development; as older Asiansare under-represented in dementia services andeach Asian community has particular needs thisis an essential pre-requisite (Hinton, 2002). It is vital to employ Asian staff who speaks thesame language(s) as the community and toengage with community leaders, servicecommissioners and planners, local policy makersand practitioners. To house the outreach activityin a local ‘trusted’ service is also useful.
In terms of what makes for an effective service‘system’ the following appear significant:• developing services that take account of local
conditions• training staff to be culturally sensitive and aware• regularly running workshops on dementia
awareness for community members and• ensuring that older Asians are offered timely
assessment of cognitive function usingappropriate diagnostic instruments (Powell, 2002; Stewart, 2002).
Research suggests that carers value advice andinformation about benefits and services as well asday care and respite care. The challenge is notonly to ensure these are delivered in a culturallyappropriate way but that carers are identified andhelped to make use of services at an early stagein the caring trajectory. Specifically offeringeducational workshops to families is oneapproach that helps engage carers (Obkuyiga, 1998).
Researching the Needs of Asian CommunitiesEvidence identifies a number of challengesassociated with researching the needs of Asianelders, particularly in the arena of dementia.Reasons include:• reluctance on the part of community members
and families to come forward to take part in aproject
• a ‘lack of fit’ between the Western view ofdementia and that held by the majority ofAsian communities and
• limited understanding by the white dominated‘research community’ of the barriers facingAsians in accessing and making use ofservices.
Even framing the research aims within a Westernillness model may alienate potential participantsand act as a barrier to engaging with theconceptualisation and experiences of olderAsians and their families. This lack of connectionis mirrored by the experience of services, manyof which are unsuccessful in generatingmeaningful connections with older Asians withdementia or their carers (Dilworth-Anderson andGibson, 1999).
The Ageing Population and Prevalence ofDementia in South Asian Populations The increasing prevalence of dementia underpinsthe enhanced policy and research focus ondementia related services and care (AuditCommission, 2002). This is strongly related to theageing population profile of the UK. Projectionssuggest that the number of people overpensionable age is likely to increase from around11.2 million in 2006 to 11.9 million in 2011 andwill rise to 13.1 million by 2021(National StatisticsOffice, 2002). Within this overarching trend is anincrease in the number of older people belongingto minority ethnic populations; by 2016 thisnumber will be nearly 1.8 million (Age ConcernEngland, 2001; Warnes, 1996).
As longevity is the most important risk factor fordeveloping Alzheimer’s disease - the mostcommon form of dementia - the incidence ofdementia is increasing in all ethnic groups,including the South Asian population (Paykel etal, 1994). Surveys indicate that overall about 6%of those aged 75-79, 13% of 80-84 year oldsand 25% of those aged over 85 have ‘case level’dementia (Audit Commission, 2000, 2002).Estimates suggest that there are currently more
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than 750,000 people in the UK with dementia(Alzheimer’s Society, 2003). The rising costs ofproviding services is of linked concern with theannual direct costs of Alzheimer’s diseaseestimated to be between £7-15 billion (Dening,2002).
Whilst specificity of prevalence of dementiawithin particular ethnic minority populations islimited, the Alzheimer’s Society has estimatedthat at least 5,000 older people from ethnicminorities have dementia (Alzheimer’s Society,2003).The fact that this estimate was made in1998, the relevant populations continue to ageand the figure is likely to be an underestimate,suggests that numbers will be considerablyhigher now (Patel et al, 1998). It is useful tonote that a number of South Asian groups areat increased risk of developing vasculardementia - the second most common form of thecondition - due to enhanced levels of diabetesand hypertension (McKeigue and Chaturvedi, 1996; Department of Health, 2001).At present, as a consequence of original patternsof migration to the UK, there are more older menwith dementia than women in the Asianpopulation (Bowes and Dar, 2000).
Data from local studies is also relevant. Onestudy in Bradford by Bhatnagar and Frank(1997), amongst the South Asian population,suggests a prevalence rate of 4% of dementia by‘psychiatric diagnosis’ and 7% by cognitivefunction instrument.
Overall then the changing age profile of minorityethnic populations in the UK means thatdementia will become a more significant issue inthe future and demands for services greater(McCracken et al, 1997; Badger et al, 1988). The fact that older Asians tend to live within theircommunities, and that Asian communities tendto be concentrated in specific geographicalareas, makes the impetus to develop robust andwell founded local responses to dementiaimperative. It is to the location of the researchproject described in this report that we now turn.
The Local Context
The Ethnic Profile of NW Kent The 2001 Census shows that 3.1% (41,534people) of the total NW Kent population(1,329,718) is of minority ethnic origin (National
Statistics Office, 2001). The largest ethnicminority community (approximately 15,000)resides in the Dartford & Gravesham area wherethe ‘Culture and Care in Dementia’ project isbased. About 80% are thought to be of PunjabiSikh origin.
There are 5 main districts in the West Kent areaand Dartford and Gravesham are the smallest ofthese, being only 66 out of a total of about 430square miles. West Kent has a population of502,524, which is fairly evenly distributedbetween the districts.
As is shown by Figures 2 and 3, nearly threequarters of the total ethnic minority population ofWest Kent is concentrated in Dartford and
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CANTERBURY
ROCHESTER
CHATHAMGILLINGHAM
SITTINGBOURNE
SHEERNESS
WHITSTABLE
MARGATEBROADSTAIRS
RAMSGATE
DOVER
FOLKESTONE
NEW ROMNEY
TENTERDEN
ASHFORD
SEVENOAKSMAIDSTONE
TONBRIDGESOUTHBOROUGH
ROYALTUNBRIDGE
WELLS
DARTFORDGRAVESEND
Map of West Kent
2001 Census
Population Distribution in West Kent
Dartford17%
Tunbridge Wells21%
Tunbridge Wells
Tonbridge & Malling
21%
Tonbridge & Malling
Sevenoaks22%
Sevenoaks
Gravesham19%
Gravesham
Dartford
Figure 2
Ethnic Minority Population by District
Dartford25%
Tunbridge Wells11%
Tonbridge & Malling
8%
Sevenoaks9%
Gravesham47%
Tunbridge Wells
Tonbridge & Malling
Sevenoaks
Gravesham
Dartford
Figure 3
Figure 1:
Gravesham. The total population of this area is181,628. Overall, 5.5 % of the population ofDartford and 10.5% of the population ofGravesham is from BME groups. Data from theCensus identifies that of the total of 8,154 Sikhsliving in Kent, 6,379 reside in the Graveshamarea (National Statistics Office, 2001). Other BMEcommunities include African Caribbean, Muslim,Chinese, Hindu, Jewish, Mauritian, Turkish andGreek Cypriot (Kent County Council, 2002).
The national picture of an ageing populationprofile is also reflected in NW Kent. Whilst weknow very little of the actual prevalence ofdementia in this community, it is clear from thepopulation profile already described thatdementia - both Alzheimer’s disease andvascular dementia - is a present and future issuewhich requires attention. The concentration ofSouth Asians in the Dartford and Graveshamareas offers an opportunity to explore need at alocal level.
History of the Asian community in NW Kent A Sikh population has been established in NWKent since the 1940’s when the first immigrantsarrived; they migrated as a result of activerecruitment by the British Government, to offsetsevere shortages in the labour force following theSecond World War. The early settlers originatedfrom a few villages in the state of Punjab in NorthIndia where the small number of families kneweach other well (Saheli Writers Group, 1994).They were primarily young males who intendedto stay temporarily, achieve economic prosperityand return to India to support their extendedfamilies. They considered a trip to England to bean opportunity of a lifetime and a reality for onlya lucky few. Thus, over a period of time, as theseearly settlers became financially secure, theychose to send for their friends and familymembers to share their good fortune. As a result,the community grew and became established. Infact, at one time it appeared as though thewhole village, with its social order andrelationships preserved, had been transportedto Gravesend (Ilyas, 1998; Pamneja, 1997).Community members continue to be close andtend to know each other very well.
Most of the early migrants came from unskilledfarming families and took up manual jobs in localfactories. Although, over the years, many havemoved on to more skilled occupations, the
community is still largely working class. Morerecently, the area has seen an influx of Asiansfrom the Midlands and the North of England;most have moved to NW Kent as a result ofmarriage. As the younger, second generation ofimmigrants have become adults and marriedpartners from different backgrounds, theirpriorities, beliefs and values have changed. This change continues and is accelerating withparticular implications for traditional supportstructures and family care relationships; it hasalso exposed a need for services for olderpeople with long-term health problems.
Having ‘set the scene’ for the ‘Culture and Carein Dementia’ project, the authors move ontodescribing its aims and methodology.
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1 The Study Area is the Dartford and Gravesham Area of North West Kent
Section 2: Aims and Methods
Aims & Objectives
This project’s principal aim was to investigate theneeds of Asian older people with dementia andtheir carers in the Dartford and Gravesham area(the Study Area1) and contribute to servicedevelopment. Subordinate aims were to raise theprofile of older Asians with dementia, enhanceunderstanding among service commissioners,providers and the Asian community, and informthe development of dementia related services.
The specific objectives were to:• Investigate the nature and extent of dementia
among older Asians and the needs of familycarers
• Determine why neither users nor carers accessexisting dementia services to any significantextent
• Identify the services Asian older people withdementia and their carers do currently accessand what kind of support they receive and
• Identify the services needed to meet the needsof older Asians with dementia and their carersin the future.
Within the first two months of the project itbecame apparent that in order to achieve theproject’s objectives, much work would berequired to raise awareness about dementia andextend knowledge of the condition among olderAsians, carers and the wider community. Thus anadditional objective was added, to: • Raise awareness and knowledge about
dementia.
Details of the original Project Plan written at thestart of the project are given in Appendix 1.
Methodology
From the outset the project had the dual purposeof collecting data for a research study that wouldin turn inform service development. In order toachieve these aims, the project drew primarilyupon action research methods (Patton, 1990).This is appropriate as it is exploratory in natureand its aims are to evaluate the needs of aspecific population. It is also based in acommunity setting and requires engagement witha wide range of participants (Hart and Bond,
1995). In order to gather evidence about existingservices and explore the views and perceptionsof GPs, service providers, carers, and the widercommunity, a number of qualitative approacheswere employed; these included semi-structuredinterviews, workshops and focus groups(Bowling, 2002; Patton, 1990).
Mapping ServicesA cascade approach was adopted to identifyservices relevant to older Asians with dementiaand their carers (Bowling, 2002). This took theform of approaching a number of key agencies,known to the project researcher and ADSS, whothen provided details of other services that weresubsequently invited to take part. It also involvedbuilding up a network of contacts.
SamplingIn terms of sampling, existing networks and keyadvisors were consulted to identify health andsocial care staff. Carers were approached viaADSS. It was initially planned that a number ofolder Asians with dementia would also beinterviewed. As the project progressed it becameclear that this would be impossible as themajority using services are in the advanced stageof the illness and are not amenable to being‘interviewed’ in the usual way. Gaining informedconsent would also be very difficult. Further, it islikely that families would be reluctant to allowtheir relative to take part, as dementia carries aconsiderable stigma in the Asian community andtends to be hidden as far as is possible. Theseissues are picked up later in the report; it isimportant here simply to acknowledge their role ininfluencing methodological decisions.
Data Collection Semi-structured questionnaires were employedto elicit the views and perceptions of GP’s,service providers and carers. The questionnairethemes were developed drawing on existingevidence about the topic, the aims of theresearch project, and the authors’ knowledge ofAsian culture. The questionnaires were designedto encourage participants to express their viewsopenly whilst ensuring that data was collectedaround a number of core issues (Bowling, 2002).Most data was gathered via face-to-faceinterviews although a small number weretelephone interviews or self completedquestionnaires. Confidentiality was assured at alltimes. The questionnaire themes for GPs,
service providers and carers are outlined inAppendices 2, 3 and 4.
A key source of data was a programme of‘Information/Awareness Raising Workshops’ and‘Focus Groups’. The information obtained duringthe sessions was recorded from observationalnotes, which included both verbal responses andobservations of tone, physical posture,expression and other non-verbal behaviour.Focus groups are successfully used to examinenot only what participants think but also howthey think and why they think in that way, theirunderstandings and priorities (Kitzinger, 1995 &1996). It is a specifically useful technique forexploring cultural values and beliefs about healthand disease, such as understandings ofdementia.
Data Analysis All data was entered into Excel worksheets andthen categorised using grounded theory andcontent analysis techniques; this enabled data tobe structured and presented in a coherent androbust manner (Glaser and Strauss, 1967;Bowling, 2002). The analysis was iterative innature. In addition to using some of thenumerical data to prepare graphs of findings,quotes from participants were used to illustratethe themes that emerged and to add depth tothe findings (Heiman, 1998).
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Section 3: Stages of the Project
The project began in February 2002 with therecruitment of an Asian Researcher who wasfamiliar with, but not actually from, the localcommunity and was independent of statutoryorganisations in the Study Area. The researchercould speak Punjabi and Hindi and wasresponsible for the design, data collection, day today management and reporting of the project. As noted above, the project was based in a smallcharity - ADSS, where the researcher could drawupon the local knowledge and dementia relatedexpertise of the manager and staff. In addition,the project benefited from research supervisiongiven by a Senior Lecturer in Social Gerontologyat the University of Kent, who was also acting asa Programme Consultant for the Mental HealthFoundation during the project period.
Although the project was originally funded for 21months, an additional 3 months of funding wassubsequently granted by the Foundation. Extratime was primarily needed as a result of: • A greater level of interest and concern about
dementia amongst service providers, olderpeople from the Asian community, GPs andcommunity leaders; this led to more timebeing spent discussing the project withindividuals from these groups.
• The level of awareness of dementia amongthe community being very limited, more timehad to be spent on raising awareness thanhad been anticipated. The informationworkshops proved to be more popular andfruitful than expected and often oneworkshop would lead to a request foranother. As a result, more workshops had tobe run over the course of the project.
• Attending service planning/commissioninggroups and interviewing the full range ofhealth, social care and voluntary sectoragencies taking more time than wasbudgeted for. This also reflects cancellationsat short notice of meetings as well as theproject’s wider relevance.
• Persuading GPs to find time to take part inthe study was particularly time consuming asmany reminders, both written and bytelephone, were needed to secure interviews.
The number of hours worked by the ProjectResearcher varied from 15 per week during thefirst nine months to 21 per week for theremainder of the two year period.
Stage 1: Making Links and Mapping Services
Publicity and Making Links From the outset it was viewed as essential toraise the profile of the project in the Asiancommunity, identify stakeholders and inform asmany people as possible about the aims andobjectives of the project. It was hoped that thiswould encourage participation and extenddiscussion about dementia.
The project was publicised in a number of waysand via a number of avenues (e.g. see Appendix5.) Introductory leaflets were produced in Punjabiand English describing the project. These werewidely circulated in GP surgeries, local libraries,Social Services Department offices, voluntaryorganisations and the Gravesend Gurdwara. All translated material was checked with Punjabispeaking staff and service users of the localAsian Day Centre (The Guru Nanak Day Centre).A prototype ‘Dementia Workshop’ wasdeveloped early on in the project to raiseawareness.
Contact was made with the Gravesend Sikhtemple (The Guru Nanak Darbar Gurdwara) toraise awareness through their local radio station;religious and information broadcasts are regularlymade from the temple during the months of Apriland November to coincide with religious festivals.Two 20 minute sessions were broadcast, inEnglish and in Punjabi, during which informationon dementia and its effects on older people andtheir carers was discussed, along with informationabout the project and contact details.
In terms of agencies with a national orinternational remit, UK based Alzheimer’s andDementia groups and the Alzheimer’s and RelatedDisorders Society, India (ARDSI) wereapproached. A Punjabi video ‘Dementia Ki Hai’(meaning ‘What is Dementia?’) was obtained fromAlzheimer’s Concern Ealing and posters andbooklets were sought from ARDSI; all were usedfor publicising the project and raising awarenessabout dementia among the Asian community(Alzheimer’s Concern Ealing, 2000).
Service Planning and Commissioning in North West KentIn order to raise the profile of the project andensure the co-operation of key agencies, contactwas made with a number of service planning andcommissioning groups in NW Kent. Themembership and structure of these changedduring the project period, reflecting nationalpolicy changes and care priorities.
At the beginning of the project, NW Kent had anumber of planning and commissioning groupsthat had a partial remit for developing servicesfor older people with mental health needs fromthe Asian population. These included: the ‘EthnicHealth and Social Care Forum for Mental Health’and the inter-agency ‘Information SharingGroup’. Additionally there was the ‘West KentStrategy Group for Older People with MentalHealth Needs’ and more locally the ‘Dartford,Gravesham and Swanley Older People withMental Health Needs sub-group’. The projectwas introduced to members of these groups bygiving short presentations at their meetings andgiving out the introductory leaflets. Knowledgewas also sought about the dementia relatedneeds of the Asian community via thesemeetings and appropriate individuals for followup interviews were identified.
By the end of the project, planning andcommissioning systems had changed.Partnership arrangements between agencies hadled to the merger of two mental health trusts -Thames Gateway and Invicta - to form the WestKent NHS and Social Care Trust. In addition, theWest Kent Health Authority became part of theKent and Medway Strategic Health Authority.
Specifically, service planning for meeting theneeds of minority populations and older peoplewith mental health problems became theresponsibility of two groups. These are: ‘TheBlack & Ethnic Minority Health & Social CareForum’ (as before) and the ‘Dartford, Gravesham & Swanley Joint Commissioning Board MentalHealth - Sub-Group Older People with MentalHealth Needs’. Strategically all commissioningdecisions are now made by the ‘Whole SystemsCapacity Planning Group’ to which the othergroups link.
Mapping ServicesA number of team meetings of statutory agencieswere attended to inform health and social carestaff about the project. Information was gatheredabout the range and type of services olderAsians with dementia currently use and whatservices they and their carers want in the future.An initial meeting with an agency often led toseveral other useful links being identified.
Team meetings attended include:• Social Services Older Peoples team in Dartford• Social Services Older Peoples team in
Gravesend• GP sector meeting in Dartford, Swanley and
Gravesend• Elderly Care Forum meeting• Admiral Nurses Meeting (Admiral Nurses
support carers of people with dementia)
Written policy and related documents describingservices and service deficits for Asians in NWKent were also reviewed.
Stage 2: Exploring the Dementia RelatedNeeds of the Asian Community
The Fieldwork Several qualitative research methods were usedto elicit information and the expression of viewsand opinions by a cross-section of respondents,whilst allowing them to influence the direction ofthe discussions. The fieldwork includeddiscussions with staff from statutory andvoluntary agencies, discussions with keymembers of the Asian community, in-depth face-to-face interviews, some postal questionnaires, ashort telephone survey of some of the residentialand nursing homes in the Study Area and focusgroups with participants of some workshops.
Interviews with General PractitionersFace to face interviews were held with sevengeneral practitioners from six different surgeriesin the area. Of these, four were male, threefemale; six were Asian and one was white. Inaddition, the researcher spoke to three other GPsat various meetings about their views on thedementia related needs of the Asian community.
Contact was made with general practitioners by writing to forty GPs in the Study Area. The project aims were introduced in a briefletter, which was accompanied by a project
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leaflet. The GPs were asked to find time for ahalf hour interview to explore their views on theneeds of older Asians with dementia and theircarers and how these might be better met. Initialletters resulted in only two positive responses.After seeking help from the local PCT intargeting those GPs who see large numbers ofAsian patients, four names were given whichresulted in three more interviews. A further twoGPs were interviewed as a result of persistencewith letters and follow up calls.
All GPs were also sent extra copies of the projectleaflets and were asked to either leave these intheir waiting rooms or, preferably, pass them onto any patients who they thought might be willingto come to a workshop or, if appropriate, becontacted for an interview.
Interviews with Health and Social Care Providers A total of 32 responses were obtained from arange of professionals. 20 of these werecompleted at the time of a face-to-face interviewand a further eight were completed by individualsand sent by post following an initial meeting toexplore their views. The remaining four werecompleted by service providers as a result of atelephone conversation with the researcher or atthe request of another interested professional.
The following staff members were interviewed: • Admiral Nurses (1)• Care managers (3)• Clinical psychologist (1)• Community Psychiatric Nurse (1)• Consultants (3)• Managers of residential homes (2) • Social services managers (3)• Staff from voluntary organisations (8)• Other health professionals (6)• Other Asian staff from statutory organisations
(3) (The NW Kent Race Equality Council, HomeCare Services and a school)
Of those interviewed, 13 were Asian, one AfricanCaribbean, one South African and 16 were white.Eight were male and 23 female. Staff from thevoluntary sector included those providingservices to older people and carers (e.g.Crossroads, Age Concern, Carer’s SupportService and ADSS) and also those specificallyworking with the Asian community (e.g. Rethink,the Kent Council for Addiction). However, despite
many attempts to secure interviews and repeatedreminders to complete the questionnaires, theproject is lacking the specific input of some keyservice managers from Kent Social ServicesDepartment.
Interviews with CarersThe existence of Asian carers in the communitywas brought to light as the interviews with GPsand service providers progressed. Some carersmade themselves known to the project as aresult of the publicity, which included the projectleaflets, dementia awareness workshops, and theradio broadcasts from the Gurdwara. Several ofthe carers interviewed identified themselves tothe project as a result of information from healthprofessionals, GPs and community workers.
In depth semi-structured interviews were heldwith seven carers. Often, more than one carerwas present at the interview; the views of each ofthe carers were recorded but have been includedin the data only once to reflect the number ofcared for people in the community. For example,in one interview the main carer was present withhis wife and daughter and all three had helpedwith the caring role and answered the questions;all their answers were recorded on one form.Four of the interviews took place in the carer’shome, two in the ADSS offices and one at thecarer’s place of work.
All the carers interviewed were Asian; two of themain carers were male and five female. Theywere all from the Dartford and Gravesham areaand had been living there for between 12 and 38years. Three of the carers spoke fluent English,three spoke a little and one did not speak any.The interviews were all carried out in eitherEnglish or Punjabi. Four of the carers had healthproblems themselves and these included anxiety,diabetes, arthritis and motor neurone disease.
Workshops and Focus Groups Ten workshops were delivered over the course ofthe project to a total of 153 people (100 male; 53female). In addition a presentation about dementia(including information on the project) wasdelivered to more than 40 people at the SikhGurdwara in Gravesend. This was delivered at atime when the temple had its own radio station onair and therefore it was also broadcast live. ADSSstaff were available at the Gurdwara for a coupleof hours after the session, to allow people who
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may have heard the information an opportunity todiscuss any concerns about friends, relatives orthemselves with the staff members.
Two of the ten workshops were delivered to theChinese community to a total of 37 people. These were arranged at the specific request ofmembers of a Chinese women’s group and weredelivered in English with the assistance of aninterpreter.
All the workshops and focus groups with theAsian community were delivered in Punjabi.These are detailed in Table 1.
Each workshop began by establishing theexisting knowledge about dementia among theparticipants followed by a session aboutinformation on dementia and the video ‘DementiaKi Hai’ (Alzheimer’s Concern Ealing, 2000). Forthe Chinese community, an English videoproduced by the Alzheimer’s Society ‘Dementiadoes not discriminate’ was shown (Alzheimer’sConcern Ealing, 2001).
In four of the workshops, which were focusgroups, a half hour session of group work wasincluded to obtain the views of participantsaround three questions: • Is dementia the result of old age or disease?• Why the stigma? • What services/help would you like to see in
place?
Telephone Survey of Residential and NursingHome Managers21 residential homes for older people in the localarea were contacted in an attempt to find out ifany Asian elderly people were accessing theirservices. The homes included those run by thelocal authority, private and voluntaryorganisations. Each manager was asked if theyhad any elderly Asians in the home at the time ofthe survey of if they had had any enquiries fromAsians over the last year.
The next section focuses on the research findingsand discussion.
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Venue Workshop group: Attended by:
Milan Day Centre Asian elderly women’s group 12 female
Rethink Asian carers group 3 female
Advocacy Forum* Asian Mental Health Forum 3 male; 10 female
The Grand Project* Asian mixed group 4 male; 20 female
Guru Nanak Day Centre Asian elderly women’s group 23 female
Guru Nanak Day Centre Asian elderly men’s group 20 male; 1female
Guru Nanak Gurdwara* Asian mixed group 9 male; 2 female
Denton Family Centre* Asian retired men’s group 32 male
Guru Nanak Gurdwara** Asian mixed group 40+ total
Chinese Group Chinese women’s group 5 female
Chinese Community Chinese mixed group 32 total
* These sessions were focus groups **Presentation at the Gurdwara, which was also broadcast live on a local radio station from the Gurdwara.
Table 1: Raising Awareness Workshops and Focus Groups
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Section 4: Findings andDiscussion
In this Section of the report the findings of eachstage of the research project are presentedfollowed by a discussion. Although much of thedata is drawn from individual interviews, theauthors are confident that they represent a wideconstituency of views. For example, in somevoluntary organisations, the task of giving aface-to face interview was delegated to one staffmember who tended to present a synthesis of arange of views. Data from workshops and focusgroups represent a cross-section of views fromolder Asians, family carers, service providers,community leaders and community members.
Each sub-section highlights those findings ofmost interest or relevance to the project aims. Key findings are noted in shaded boxes at the end.
Mapping Services
This section gives an overview of the currentservice provision for older people in the areaand highlights the services that are moreregularly accessed by older Asians withdementia. Services are provided and/or fundedby a mixture of social services, health agenciesand the independent, mainly voluntary, sector. It is important to note how willing serviceproviders were to contribute to the project andhow many felt frustrated at the lack of servicedevelopment for older Asians with dementia.
The main social care provision for olderpeople in the area is as follows: • a range of day care and rehabilitation services• occupational therapy services for major and
minor equipment and adaptations • permanent and respite residential care• domiciliary services • day care centres including the Guru Nanak
and Milan Day Centres, both of which providespecialist day care for the Asian community
• services for deaf, partially deaf, blind andpartially sighted people
• Social Services Care Management Teams withappropriate language skills and access to theKent Interpreting Service and
• Social Services BME CommunityDevelopment Workers
Services purchased from the independentsector include:• residential and nursing home places provided
mainly by the private sector • Age Concern’s day care services • domiciliary and bathing services• meals services• support for carers e.g. Carers Support Service,
Dartford and• specialist dementia services of ADSS
Housing services:There are various sheltered housing schemes inthe area, provided by the local authority and alsoone scheme that is exclusively for the Asiancommunity. This scheme is known asPresentation House and is provided by the BMEsocial investment agency - Presentation HousingAssociation.
Health services:The West Kent NHS and Social Care Trust hastwo wards at Stone House Hospital in Dartford(Riverview and Thames Wards) that aredesignated for the care of dementia patients.Riverview assessment ward is a short stay ward(six-eight weeks) but often patients remain therelonger due to a shortage of long-term careplaces in the area. Thames Ward is the maindementia ward in the area and has places for 19long stay patients. The project found three Asianpatients with dementia who had been there forseveral years.
There is also a day hospital facility (HornbeamDay Centre) for older people at Darenth ValleyHospital. No Asian patients were found at thisfacility.
The main facilities accessed by Asian olderpeople in the community are the:• Guru Nanak Day Centre in Gravesend• Milan Day Centre in Dartford• Sahayak project• Advocacy Network• KCA (UK) (Kent Council for Addiction UK)• Grand project.• Presentation Housing (see above)• Denton Family Centre• North West Kent Racial Equality Council • Guru Nanak Darbar Gurdwara in Gravesend and• Gurdwara in Dartford.
The Sahayak project is based in Gravesend andworks with individuals from minority ethnicgroups. It provides a telephone help line andbefriending service for those experiencing mentaldistress and their carers.
The Grand project is Gravesham’s Healthy LivingCentre that aims to raise health awarenessamong ‘at risk’ groups including the elderly andethnic minority groups. The project has Asianstaff members who are responsible fordeveloping programmes to educate thecommunity about a wide range of health matters.
KCA is a Gravesend based voluntaryorganisation that aims to help people withconcerns about alcohol or drug use. Thisorganisation also has a designated worker towork specifically with members of the ethnicminority community.
The most popular and ‘acceptable’ statutoryservice is day care for frail elders from the Asiancommunity. Whilst this is culturally appropriate itis not specifically developed to support olderpeople with dementia. Another important issue isthe employment of Asian workers whose specificremit is to work with Asian service users and/orcarers. They tend to speak the same language asthe older Asian users, recognise religiousfestivals and cultural mores and can relate to theusers experiences.
Key Points:
■ There is a network of voluntary and statutorygroups in the local area that provide servicesto people from minority ethnic groups
■ All service providers welcomed the initiativeand were keen to engage in discussions toimprove access to dementia services by theAsian community
■ The largest numbers of Asian elders use thestatutory day care services provided forphysically frail elders, not dementia services
■ Having at least one dedicated Asian workerwhose specific remit is to work with the Asiancommunity is an important aspect of serviceprovision
Mapping the Mental Health Needs ofthe Asian Community
In this section findings from interviews with GPs,service providers and carers are presented.
Data from General Practitioners
The following section summarises the responsesgiven by GPs illustrated by quotes. The datapresented in Figures 4-7 has been analysed bylooking for key themes that emerged from theseinterviews. The profile of the GPs is described inSection 3.
Dementia awareness and diagnosisAll GPs agreed that most Asians in the localcommunity are not aware of what dementia isand that they accept many of the early changesassociated with dementia as a ‘normal’ part ofthe ageing process. Most GPs felt that there is agreater tendency among the Asian population toassociate memory problems with ageing than isthe case for the indigenous population (Figure 4).There was also a tendency for Asians to presentat later stages of the illness (Figure 5).
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0%
20%
40%
60%
Many older people consider memory problems as a normal part of the ageing process. Is this
more or less often among Asians?
More often Less often Same Not sure
Figure 4
0%
20%
40%
60%
Do Asians present at later stages of the illness?
Not sureYes No
Figure 5
In addition to answering specific questions, GPs were invited to make additional commentsand the quotes below illustrate some of thechallenges that GPs face in trying to diagnosedementia.
‘Many Asians don’t want a firm diagnosis’
‘Asians don’t readily accept care workers’
‘So long as they are coping, they don’t want anyother services’
‘There is a stigma around the problems and oftenthey are embarrassed to talk about the symptoms’
‘For Asians, illnesses have to be physical - they somatise everything and diagnosis is verydifficult’
‘We need to raise awareness among thecommunity about dementia and memoryproblems. Asians don’t distinguish betweendementia and mental illness and don’t talk aboutit because of the stigma.’
Treatment, care and services To establish what was happening to the patientsonce they had approached their doctor, GPs wereasked to comment on the course ofaction/treatment they took for these patients.
Around 83% of GPs said they would refer ontothe psycho-geriatricians (Figure 6) but could notnecessarily give the name of whom they wouldrefer to. Interestingly, data from the healthprofessionals and carers surveys (presented lateron in this report, see Figures 8 and 17) does notendorse this finding.
Only one GP referred patients to ADSS regularlyand another said that all the GPs at the practicereferred on to social services who put in apackage of care through care management. Two GPs mentioned prescribing drugs for theirpatients; however one of these was referring to adaily dose of soluble aspirin rather than to anti-cholinesterase drugs.
One of the questions asked: ‘What services areavailable locally for patients with dementia?’ Thiswas included to gauge the knowledge of GPsabout local services for dementia patients andtheir carers. The two quotes below illustrate thecontrasting degree of knowledge about dementiaservices.
‘ADSS, Crossroads, Carer’s support groups.Generally the care manager will do the referringon to services.’
‘The only service is at Stone House - the psycho-geriatricians. Patients over 60 with memoryproblems are referred to a neurologist for a scan.There are no other services.’
Service development and training In response to a question about additionalservices for Asian patients with dementia andtheir carers (What additional services would youlike to see in place to help with the care of Asianselders with dementia a) for patients, b) forcarers?), four GPs said they would like to seeday care services for their patients; otheranswers included:• respite beds in Nursing homes (2)• EMI beds (1)• more professional carers for homecare
services (1)• overnight support at home (2)• an Asian helpline (1) and• simpler referral systems (1)
Two quotes summarise most of the responses:
‘Yes we need much more in the way of respitefor carers. More support at home for the carers.Need good EMI residential care. The psycho-geriatricians avoid putting a label of dementiabecause there aren’t enough services to offerthem; there is a severe shortage of EMI beds’
‘An EMI home for Asians would be good, we have around 17,000 Asians in Gravesend.
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0%
20%
40%
60%
80%
100%
1 2 3 4 5
What course of action/treatment do youfollow for these patients?
1. District Nurses2. Psycho-geriatrician3. ADSS4. Care package5. Medication
Key:
Figure 6
We have to look at the cost of delaying theprogression of dementia over other things suchas heart disease and diabetes, which are veryhigh among the Asian population, and there isvery little support available for them. Also theseand other diseases affect younger people and itis important to weigh up who you are going toprioritise treating, as there is only a limited pot ofmoney available. Doctors have to make thesekinds of decisions all the time and I wish wedidn’t have to.’
In terms of specific gaps in dementia care,comments on professional deficits included:
‘There are not enough interpreters or enoughCPNs. We need Asian CPNs who speak thelanguage.’
GPs were asked their opinion as to why there issuch a poor uptake of ADSS and other dementiaservices by the Asian community (Figure 7). All GPs, including those who the researcherspoke to informally at meetings, agreed that themain issues for the community were the lack ofknowledge about the condition and about theavailability of services, cultural differences,language difficulties and the very high degree ofstigma associated with dementia and othermental health problems.
All GPs also felt that there is a need for furthertraining among health and social servicesprofessionals around dementia and culturalawareness.
‘We all need more training in specialised fields.’
Key Points:
■ GPs recognised that most Asians don’t knowwhat dementia is and that they accept theearly symptoms of the disease as a normalpart of the ageing process
■ Most GPs interviewed were not well informedabout local services available for patients withdementia and relied on Social Services caremanagers to refer patients on to other services
■ The GPs understood the community well andfelt frustrated by the lack of cooperation fromAsian patients when trying to diagnosedementia and other mental health problems
■ Services GPs thought should be developedincluded: respite care, more EMI beds, homebased overnight support for carers, simplerreferral systems, more CPNs and interpreters
■ GPs recognised that the main barriers to theuptake of services by the Asian communitywere: a lack of knowledge about services,cultural differences, language difficulties and avery high degree of stigma experienced byAsians with mental health problems.
■ All GPs interviewed agreed that theythemselves and other health and socialservices professionals would find furthertraining around dementia and culturalawareness helpful.
25
0%
20%
40%
60%
80%
100%
1 2 3 4 5 6
Reasons for poor uptake of dementia servicesby the Asian community
1: Ignorance about services
2: Cultural differences 3: Language problems4: Laziness5: Stigma
GP Q42
Key:
Figure 7
Data from Service Providers
The profile of the service providers is describedin Section 3. This section draws together someof the key themes that emerged from the face toface interviews and self-completedquestionnaires.
Service usage by older Asians with dementia To gain information about the services alreadyaccessed by Asians and how to improve accessto other services, providers were asked thefollowing two questions:‘If Asian patients are not coming forward for help,why not?’
‘What can be done to change the situation?’
Figures 8 and 9 show the responses obtainedand it is interesting to note that in Figure 8, fiverespondents (16%) said that many Asians accesstheir services. All five of these were Asianworkers who were either specifically recruited towork with ethnic minorities or, were working in a
service specifically for Black and ethnicminorities. Figure 8 also shows that a largenumber of people in the survey felt that the mainbarriers to Asians accessing services werearound issues of confidentiality, stigma andfinances. Interestingly, all those who gave thesecomments were either Asian or from anotherBME community. Several people said that theirservice was dependent on referrals from othersources; those who commented specifically onGPs not referring on to services included thepsycho-geriatricians and other hospital-basedstaff. This finding clearly conflicts with theresponse of GPs in Figure 6.
There was a very genuine concern among somesocial services staff about the quality of theservice they were providing to members of theAsian community. They welcomed the researchproject in the hope that it would lead to betterservices for their clients.
‘I don’t feel we provide a good service to thecommunity because we cannot communicatewith them. We are willing to learn the language.’
In contrast to the above responses, the viewsheld by some other professionals were ratherdisconcerting as they reflected the very mythsthat have been challenged over the years and theEurocentric nature of some of the serviceprovision in the area.
‘I’ve always felt that Asians are looking after theirown and as such I wouldn’t expect more to beaccessing our service.’
Other questions aimed to gain information aboutthe methods used by service providers to attractAsian clients to their services. The resultsshowed that the most common methodemployed was to use leaflets with tenrespondents (31%) indicating that they haveleaflets about their service. Nine respondents(28%) said that they did not have any specificmethod of promoting their service and they reliedon referrals from GPs and other healthprofessionals. Seven respondents (22%) saidthat they had information in Asian languages andseven of the organisations had employed at leastone Asian worker who had a responsibility foroutreach work within the community.
26
0%
5%
10%
15%
20%
25%
30%
35%
1 2 3 4 5 6
HP Q12
Key:
1. Don't know
2. Communication
3. Plenty access
4. GP's don't refer
5. Unaware of services
6. Other
(stigma/confidentiality
/financial)
Why don't Asians access services?
Figure 8
0%
10%
20%
30%
40%
1 2 3
What can be done to change the situation?
Key:
1. Don't know
2. Outreach/Raise awareness
3. Recruit AsianStaff
Figure 9
Dementia awareness and help seekingAlmost half of those taking part in the surveysaid that there was a need to raise awarenessand do outreach work in the community and thisincluded raising awareness among GPs. Thecomments below from a health servicesprofessional covered many of the points raised.
‘Asian patients don’t come forward. There areproblems with recognition of the disorder. GPsdon’t have much time and Asian elders don’tget care throughout e.g. BP management,diabetes etc. GPs don’t refer on. We need toimprove patient/population knowledge, makeGPs more aware of care pathways, make ourservices more user friendly and recruit moreAsian staff. A GP register for dementia patientsshould be kept and the ethnicity of patients onthe register monitored. GPs should also do theover 75s health check.’
A number of the questions were intended touncover the issues that Asians with dementiaand their carers raise with service providers andwhether these differ in any way from the issuesraised by their counterparts in the indigenouspopulation.
The questions were as follows:• What issues/triggers do clients bring to your
attention?• What issues/triggers do Asians bring to your
attention if they are not familiar with‘dementia’?
• Are the issues that Asians bring to yourattention different from those of other groups?
Figure 10 shows that 11 respondents (34%)mentioned the usual symptoms associated with
dementia such as forgetfulness, wandering andanti-social behaviour and another seven (22%)mentioned carer’s issues where the role of thecarers had changed and become increasinglydifficult.
Figure 11 shows that 41% of those whoanswered the question felt that the issues Asianclients brought to their attention were different tothose raised by other groups.
‘They never use the word ‘dementia’. They willoften say things like ‘because of old age she/heis going mad’. They show much concern for whatother people think and try to hide it. Often theywill send the person to another relative,particularly female relations, i.e. daughters.’
‘They complain of being depressed and notachieving the housework etc. but this is loss ofskills. Asians come forward later on in the illness.None of them are on medication for dementiabecause they are at advanced stages or havevascular dementia.’
‘Sometimes I hear the young daughters-in-lawsaying things like their relative has become child-like and also they often describe them as havinggone insane.’
However, 17 people (53%) said that they did notknow or could not comment because of theirlack of experience with Asian clients.
Barriers to uptake and service development The interviewees were asked questions toaddress the reasons behind the low uptake ofADSS and other existing mental health servicesand also to collect their views on the kind ofservices needed for the Asian community.
27
0%
5%
10%
15%
20%
25%
30%
35%
1 2 3
What issues/triggers do clients bring to your attention?
Key:
1. Forgetfulness, wandering, hazards, anti-social behaviour
2. Carers issues
3.Don't know/No answer
Figure 10
0%
20%
40%
60%
Are the Issues that Asians bring to your attention different from other groups?
HP Q20
Don't knowYes No
Figure 11
The next two figures, 12 and 13, show theresponses obtained.
It is clear from Figure 12 that the main reasonsfor the low uptake of services were thought to beignorance about services, cultural differences,language problems and stigma.
Several other reasons included the following:• the lack of cooperation by Asian patients• transport issues• the lack of ethnic minority staff in some
services and• service providers not marketing their services
to the Asian population.
Figure 13 shows that 77% of the intervieweesfelt that new dementia services for Asians couldbe integrated into existing services. However,nearly half of these made additional commentssuch as:
‘Ideally’
‘Maybe we will need separate services for thecurrent generation of Asian elders.’
‘Yes, because of budgetary reasons. Specialistschemes only need to be in place for the next 10years.’
‘Yes, 24 hr care can be integrated. It would notbe realistic to set up separate services, as theyhave to be very local. Day care would be betteras a separate service.’
Only four people said ‘no’ and two of these wereclearly referring to the current generation ofAsian elders as they made comments such as‘No, not yet.’
A question was also included about the needs ofAsian carers: ‘Is there a need for specific services for Asiancarers?’
75% of respondents answered ‘yes’, 9% said‘probably’ and 13% said ‘no’. Severalrespondents stressed the particular need forservices in the Dartford area since there werealready some services available in Gravesend.
‘Perhaps Dartford could do with a group like theSahayak carer’s group in Gravesend. Informalsupport between carers would be useful.’
They identified the main services accessed byAsian elders as the Asian day centres in Dartfordand Gravesend with very few Asian elders orcarers accessing specialist dementia care. These are more acceptable.
Key Points:
■ Service providers consider the triggers to helpseeking amongst older Asians to be:forgetfulness, wandering and anti-socialbehaviour as well as carers’ dealing with morechallenging behaviour
■ The main services accessed by Asian elderswere the social services Asian day centres inDartford and Gravesend with very few Asianelders or carers accessing specialist dementiaservices
■ Although the day services are more‘acceptable’ because they are not mentalhealth services, they are not appropriatelyresourced for managing dementia
28
0%
20%
40%
60%
80%
100%
1 2 3 4 5
Reasons for the poor uptake of ADSS and other mental health services by the Asian community.
Key: 1. Ignorance about services
2. Cultural differences3. Language problems4. Stigma
5. Other
HP Q27
Figure 12
0%
20%
40%
60%
80%
Yes No
Could new dementia services for Asians beintegrated into existing services?
HP Q23Not Sure
Figure 13
■ Services that did not have any Asian workerswere unlikely to be accessed by Asian eldersor their carers. In contrast, services that had atleast one Asian staff member, with a specificremit to work with the Asian community, were readily accessed
■ The main reasons for the poor uptake ofdementia services by Asians were: a lack ofknowledge about the condition and aboutservices, GPs not referring on to services,communication problems, stigma and fearsabout breach of confidentiality
■ Many service providers are concerned aboutthe lack of appropriate provision for Asianelders with dementia
■ Most service providers felt that new dementiaservices for Asians should be integrated intoexisting services. However, they alsorecognised that the current generation ofAsians may need separate services
Data from Carers
Data from the seven interviews with carers ispresented below. Details about the carers aredescribed in Section 3.
Triggers to help seeking and services All the carers said that the two most significantchanges they had noticed in the person they werecaring for were the loss of independence and anincreasing level of frustration due to their relative’sdeclining ability. The symptoms that some carerswere struggling to understand and cope withincluded increased aggression and paranoia.
Questions around the organisation of care in thehousehold (Figure 14) revealed that five of theseven people interviewed said that their relativeneeded 24-hour supervision. Three carers hadmanaged to get a place for their relative at oneof the Social Services Asian day centres and twoothers were in long-term care.
It is interesting that where the main carers weremales, both the cared for older persons were inlong-term care. The other five dementia patientswere being looked after by female relatives(daughters or wives) rather than the malerelatives (sons or husbands) even where theseexisted.
Figure 15 focuses on the help that carers weregetting and the help that they said they wouldlike. 71% (five carers) had experience of theirrelative being in hospital because of thedementia, either at the time of the interview orover recent months.
The Asian day care service was perceived to bethe most helpful type of service by the threecarers who accessed it and it was requested byall five carers.
29
0%
20%
40%
60%
80%
1 2 3 4 5 6
CQ 203
Organisation of care
1. Only carer
2. Shared between households
3. With SS visiting
4. Going to day care
5. 24 hour supervision
6. Long term care
Key:
Figure 14
One carer was not getting any help at all and,because of the language difficulties, the only twoservice providers she had contacted were thosevoluntary organisations that had Punjabi-speaking staff. This carer contacted the projectresearcher after hearing one of the dementiaawareness broadcasts on the local Asian radiostation (Khalsa radio).
Figure 16 shows the range of responses givenwhen carers were asked: ‘What help would youlike?’ Most said they would like more day care,meaning more days per week and more hoursper day.
‘I’d like him to be able to go to day care wherehe can sit with other Asians, talk to them andunderstand them. He needs a centre where theycan understand his needs and encourage him todo some kind of exercise to help him with hismobility. He needs help now while he’s still ableto do a few things.’
Five of the seven carers said that they would useservices more if they could cater for thelanguage and cultural needs of their relative. The services that were perceived to be leastuseful were carers support groups andbefriending services.
All of the carers felt that in the future dementiaservices for Asians should be provided withinmainstream care. Access to Asian staff isrequired for at least the current generation ofolder people.
Accessing servicesFigure 17 shows that all the carers hadexperienced difficulties in trying to access servicesfor their relative. Not surprisingly, all the carers feltthat language was a particular difficulty and madecommunication very difficult. Some of the ‘other’difficulties experienced by carers included:bureaucracy within the system, a lack of liaisonbetween professionals and GPs beingunsupportive, dismissing the early symptoms asold age and not referring on to other services.
‘In the beginning the GP just kept saying she isgetting old. We had to put a lot of pressure onthe doctor and it took a couple of months afterthe wandering incident before we began to getanywhere.’
Carers were asked if they or their relative woulduse any, or any more, of the existing services andthe results are summarised in Figure 18.
30
Would you use these services?
100%
100%
57%
43%
57%
43%
71%
86%
43%
100%
Hospital
Home care
Social Services
District nurses
Age Concern
Crossroads
ADSS
Rethink
Day centre
Residential homes
Figure 18
Difficulties encountered in trying access help
57%
29%
57%
14%
43%
57%
29%
43%
57%
100%
GP
Others
Stigma
Financial constraints
Religion
Barriers within the system
Family resistance
Culture
Dietary requirements
Language
Figure 17
0%
20%
40%
60%
80%
1 2 3 4 5 6 7
CQ. 401
What help are carers getting?
Key:
1. Day care
2. CPN
3. Carer visiting home
4. Hospital
5. Respite
6. Advocacy
7. Residential care
Figure 15
0%
20%
40%
60%
80%
1 2 3 4 5 6
CQ. 404
What carers would like
1. More day care
2. Respite care
3. Professionals with language skills
4. Bespoke service
5. Befriender for the cared for person
6. Appropriate residential care
Key:
Figure 16
Interestingly, all the carers said, ‘yes’ to usingresidential homes, even though at times duringthe interview they indicated that the notion ofputting their parent in a home was completelyunthinkable. This may have been because by theend of the interviews the carers had a betterunderstanding of the likely decline of dementiapatients and may have begun to recognise thatmanaging their relative at home would becomeincreasingly difficult over time.
Information giving Few carers had been given accessibleinformation, either about how to manage or todeal with their relative’s dementia. In terms ofinformation about services, one carer had nothad any information at all, four had been giveninformation about the Asian day centre and onlyone carer knew of ADSS. Six of the seven carerssaid that they had not been given anyinformation about support services forthemselves. One carer had been giveninformation about support groups by hospitalstaff on Thames Ward. Few carers knew theywere entitled to any additional, or carer related,welfare benefits.
Concerns about quality of life All carers had concerns about the inactivity oftheir relative with dementia. Most said they spentmany hours each day engaged in passiveactivities such as just ‘sitting around with thetelevision or radio on’.
Key Points:
■ The majority of carers were providing 24 hoursupervision for their relative without anyrespite from their caring role
■ The most significant triggers in promptinghelp seeking were the loss of independenceof the person with dementia and the carerslevel of frustration around declining abilities
■ ‘Increased levels of aggression’ and‘paranoia’ were noted as the two mostchallenging symptoms of dementia tounderstand and cope with
■ Some of the cared for relatives eitherattended an Asian day centre or were inlong-term care; day care is regarded as veryhelpful and it is the one service carers wantgreater access to
■ The main barriers to service usage are:linguistic and cultural issues, bureaucracyand GPs failing to refer users on to specialistcare
■ All the carers had wished they had beengiven more information about how the illnesswould affect their relative
■ Carers felt that in the future dementiaservices for Asians should be provided withinmainstream care; access to Asian staff isrequired for at least the current generation ofolder people
■ Carers support groups and befriendingservices were not perceived as useful
■ All carers said that they would only considerresidential care for their relative if it becameimpossible to manage at home.
31
Data from Workshops and Focus Groups
This section presents data from three types ofsessions held within the community:• Information workshops to community groups• Focus groups and • Raising dementia awareness sessions
The workshops proved to be a very significantaspect of the project. They provided a vehicle for:• promoting the project’s aims• enhancing understanding of dementia• informing members of the Asian community
about services and service availability• exploring the specific support and service
related needs of Asian elders with dementiaand their carers and
• recruiting interview respondents
As the project was rolled out and communitymembers became more familiar with theresearcher, workshop attendance increased andparticipants became more willing and confidentabout engaging in discussion about dementia.The popularity of the workshops spread as moreand more people took advantage of theeducational opportunities offered. Often oneworkshop would lead to a request for another,including two that were run for the Chinesecommunity. As the key aim of this project is toscope the dementia related needs of the Asiancommunity, most material from these workshopsis not included below. However, it is worth notingthat the workshop attendees from the Chinesecommunity were quick to grasp the relevance ofdementia issues and the need to developappropriate dementia services for their oldermembers and carers (Elliot et al, 1996; JosephRowntree Foundation, 2000).
Workshops to Community GroupsThree of the workshops were delivered at thetwo local Asian day centres, the Milan DayCentre in Dartford and the Guru Nanak DayCentre in Gravesend. Each of these wasattended by a group of elderly clients of the daycentres and two members of staff.
Due to the attention span of some of the serviceusers, the focus of these sessions was to raisedementia awareness among the groups, ratherthan to engage the participants in discussionabout stigma and services. Nevertheless, some
of the comments made by service users duringthe sessions were indicative of their discontent.For example, after the showing of the video‘Dementia Ki Hai’ at one of the workshops, anelderly lady signalled the researcher over to thechair next to her and commented:
‘There are several ladies among us who havethis illness and they should have somewhereelse to go. It is not right that she (pointing to thelady in the chair next to her) is here. She justkeeps asking the same thing over and overagain. She doesn’t know where she is, what she’sdoing or where she is going.’
The researcher informed the group aboutservices in other parts of the country for Asianswith dementia and questioned why thereweren’t any similar dementia services in theStudy Area. One elderly woman responded:
‘I know that in other areas there are lots ofservices for Asians, but in this area the councildoes not want to spend the money for servicesfor us. We don’t even get a free bus pass in thisarea whereas in other areas they do.’
A cultural viewpoint expressed by anotherworkshop participant helped to explain apossible contributing factor to the lack ofdevelopment of specific dementia services for Asians in this area:
‘We are slow to ask for help because we arebrought up that way. We are taught throughoutour life that while we are young our parents andgrandparents look after us. Then when they areold, it’s our turn and responsibility to look afterthem. So now we expect our children to takecare of us.’
Many of the elderly women showed empathywith the carers in the ‘Dementia Ki Hai’ videocoping with dementia symptoms in their partner.This included both verbal agreement and non-verbal gestures such as nodding and tutting toshow their sympathy for the couple. Several ofthe women repeatedly said short words ofprayer when they understood how the illnesscould affect elderly people, especially whentalking about the symptoms in the later stagesof the illness such as not recognising closefamily members. These words of prayers were
32
said several times during both the dementiapresentation and the video.
The session with the elderly men’s group at theday centre also revealed interesting data. Someof the participants were keen to discuss theirconcerns about their own memory loss and thatof another member of their group who was notpresent at the time.
‘I think I’ve got this illness, whatever you tell metoday, I won’t remember it tomorrow. Sometimeswhen I’m out shopping I can’t remember what Ineed to buy and often when I’m doingsomething, I find I’ve forgotten what I had set outto do.’
‘There is only one other person (Mr. X) whoattends this centre and has dementia, but he’snot here today, so maybe I can just take some ofyour information and pass it on to him.’
The fact that older Asians - and sometimes Asianstaff - are prepared to share personal detailsabout the medical symptoms and conditions ofothers in a public setting does raise issues ofboundaries and respect for confidentiality. It alsoadds weight to these comments:
‘Sometimes if you fight to get help or a service, it can have a very negative effect. For example, I felt that my rights were taken away when I triedto access the day centre. Confidentiality isbreached all the time and everyone ends upknowing your business, especially if you havecomplained about someone or about a service.’
‘It’s often the service users of the day centre whotalk to each other and then gossip about whatthey have found out about afterwards.’
Raising Dementia AwarenessLinks were made with community leaders tofacilitate an evening session of raising dementiaawareness at the local Gurdwara in Gravesend. A presentation to the congregation was followedby a ‘surgery’ session when the researcher andanother staff member from ADSS were presentto talk to individuals who had concerns eitherabout their own memory or that of anotherelderly person. Information was made availableon a wide range of carer and service user issuesin relation to Alzheimer’s and dementia. Thisevent took place at a time when the Gurdwara
had its own radio channel broadcasting to thelocal community and therefore the messagesabout dementia reached a much wider audiencethan was present in the congregation.
Twelve people came forward for information afterthe presentation and eight of these gave theirnames and addresses so that they could beinvited to the next workshop in the community.Three others took away information afterdiscussing their concerns with the ADSS staffmembers and two other people contacted theresearcher by telephone after the event.Interestingly, one of these carers commentedthat she had heard about the research project onmore than one occasion previously and had beencontemplating contacting the researcher. Whenshe did finally make contact it was because ofthe dementia awareness message broadcastfrom the Gurdwara.
‘I felt Baba was talking directly to me. He hadlistened to my prayers and this was his answer to me.’
Focus GroupsFour focus groups were held over the duration ofthe project with a total of 48 male and 32 femaleparticipants. They were all Asians from the localarea and included lay members of the community,professionals, volunteers and a large number ofretired people. There was very little basicknowledge of what dementia is among thegroups, indicated by participants askingquestions such as: ‘Is it contagious?’ Thereforeeach session also had a significant element ofraising awareness. At the end of a presentationon dementia and a showing of the video, thegroups were broken down into smaller groupsand asked to discuss the following threequestions:
1. Is dementia the result of old age or disease?2. Why the stigma?3. What services/help would you like to see
in place?
The responses to the first question, ‘Is dementiathe result of old age or disease?’ showed a largevariation in the views held.
33
Some examples of the answers given are listedbelow:
‘If the symptoms occur at a young age then we’dthink it was disease, but in old age it is different,we should observe the progression of thesymptoms. When a woman has a hysterectomy,some depression occurs; when the menopausetakes place, it also affects us mentally.’
‘It is a deformation of the mind and it is purelydue to old age.’
‘Dementia is due to old age.’
‘In my opinion it is a disease of old age.’
‘Old age is not a disease but a blessing if weapproach it properly.’
It became clear from the responses of someindividuals (nearly always men) that they found itdifficult to accept that dementia is anything otherthan a normal consequence of the ageingprocess. Indeed the responses of theseindividuals to the next question, ‘Why thestigma?’ also revealed some of the reasons whyAsians do not want to accept that anything iswrong.
‘Because of self-pride, ignorance, and you aresocially considered downtrodden and outcast ifyou have to ask for help. Self-pride covers a widerange of our cultural background. We alwaysthink of what other people will think of us ratherthan our own difficulties.’
‘Social reasons. Resignation to the belief that youshould appear reserved and hide the problems.’
‘Among Asians it is considered that the familyshould look after them when a person has got aproblem. People generally try to shield theirproblem until it becomes acute.’
‘In Punjab people want to cover up the disease.They want to look fit to other people; it’s somesort of ego. They think that if they disclose thedisease they will be looked down upon by otherpeople.’
‘Because it’s an illness of old age due to worriesand loneliness’
‘Because of lack of information’
‘Our society looks unfavourably on people whohave to ask for help and this has originated fromhow we were brought up back in India. We areembarrassed to ask for help - what will peoplethink?’
‘Our culture is such that we care for our elders athome. People will talk about not caring for themin old age.’
‘Our culture says that we must look after ourolder relatives. I would feel let down by my familyif they didn’t look after me in my old age.’
‘Nobody wants to admit that they might havesomeone who is ‘pagal’ in their family so we justmanage as well as we can within the family but itcan be very hard on the main carer.’
The last question focused on services that theparticipants would like to see in place for theircommunity members with dementia and theircarers. They were asked to consider servicesthat they would use themselves should the needarise. Most participants said that they would liketo see a specific day centre and otherscommented on the community’s continuing needfor information to ensure that carers areencouraged to ask for help when it’s needed.
‘We would like to use a day centre for our peoplewith dementia. Existing residential homes couldbe made accessible to us by introducing BMEnurses and other staff to overcome languagebarriers and cultural things.’
‘The community needs more information aboutdementia and also about what help is availablefor carers. We also need information on whatfinancial help is available and how to accessthings like meals on wheels, social services etc.We also need to have the contact number of aperson to whom we can address our concerns.’
Some of the comments from women in the focusgroups pointed to a fundamental difference in theattitudes and expectations between the twogenders:
34
‘We have to look after ourselves and get help,because our men will just let us carry on workinguntil we get so ill mentally and physically that wecan’t anymore.’
‘We don’t know anything about these illnessesand therefore don’t know when we should orshouldn’t ask for help. We only ask for help whenwe can’t manage any more.’
Financial concern, particularly about payingcharges for services, was another commonissue. Some individuals were very reluctant topay charges for social care services arguing thatthey had paid their taxes and were entitled tofree services. They took the view that paying forservices is effectively paying twice.
‘I would like to see a free day centre specificallyfor patients with dementia; if it’s not free ourpeople won’t use it.’
‘I think she needs services; I’ve tried to get them(referring to homecare services) to come in forher, but they want me to pay for that. Why shouldI pay for that - I won’t.’
Other comments about services from the focusgroups included:‘We need to be able to use a residential home forour elderly.’
‘We need respite homes to give the carers andfamily a break.’
In contrast, others held very different views:‘Our culture says that we must look after ourolder relatives. I would feel let down by my familyif they didn’t look after me in my old age.’
Key Points:
■ The workshops and dementia awarenessraising sessions proved to be a very significantaspect of the project and were very popularwith a wide range of participants
■ Empathy was shown for carers struggling withsupporting a relative with dementia in a video,indicating a greater level of awareness of theissues than is openly acknowledged
■ There was very little basic knowledge aboutdementia among workshop participants
■ Some older people felt able to discussconcerns about their own memory problemsand those of others in a focus group setting
■ The fact that older Asians are prepared toshare personal details about the medicalsymptoms of others in a public setting raisesconcerns about respect for confidentiality
■ There was evidence of a very high degree ofstigma associated with dementia and othermental health problems within the community.This contributed to a reluctance toacknowledge the symptoms of the illness andget help
■ The cultural upbringing of Asians acts as abarrier to community members readilyaccessing help. Specific barriers include:service charges, a need to hide problems,pride, familial duty, concern about what‘others’ think and the perception that usingservices is a sign of failure
■ Other factors that contribute to the lack ofuptake of services are: lack of knowledge ofdementia, lack of knowledge of help available,communication difficulties and not knowingwhom to contact.
35
Data from telephone survey ofResidential and Nursing Homes
Of the 21 homes contacted, 19 had no Asianresidents. Furthermore 17 had not had anyenquiries about placing an older Asian over thelast year. Two homes had two Asian clients each.Both of the clients in one of the homes couldspeak English; the opposite was true for thesecond home. This home had one Asian part-time staff member and some of the other staffmembers had made efforts to learn a few wordsof Punjabi in order to communicate with theAsian residents. In total, four of the homesemployed Asian staff.
Two homes had received enquiries from Asiansseeking a placement over the previous year butneither of these had resulted in a place beingtaken up. In each case the reason given for theplace not being taken up was an inability to meetthe linguistic and dietary needs of the clients.Interestingly, the owner of a small, privately runhome, who belonged to a minority ethnic groupherself, commented:
‘No, we don’t have any Asians in our service, I think they keep them at home and look afterthem themselves. That’s what they do back homein my country.’
Key Points:
■ Of the total number of 21 care homescontacted, 19 had no Asian residents and 17had not had any placement enquiries overthe last year
■ The other two homes had two Asianresidents apiece
■ The home where the two residents onlyspoke Punjabi employed an Asian staffmember; some of the English staff had alsomade efforts to learn some Punjabi
■ In total four of the care homes employed Asian staff
■ There is evidence that placements do notproceed as a consequence of the carehomes not being able to accommodate thelinguistic and dietary needs of older Asians
Discussion
This section will draw together key findings ofthe research and discuss them under a numberof themed headings.
Understanding of DementiaOne of the most striking findings of this projectwas the lack of knowledge and understanding ofdementia among members of the Asiancommunity. Most Asian participants - includingseveral professionals - were not familiar with theterms ‘Alzheimer’s disease’ or ‘dementia.’ They did not conceptualise the illness as anorganic disease that is associated with, ratherthan a consequence of, old age as it isunderstood to be in the West (Innes, 2001). Asian languages, including Punjabi, do not havean equivalent word for dementia. This is aconsistent finding of research in the field ofethnicity and dementia; a number havespecifically highlighted the lack of understandingdementia sufferers and Asian families have of theillness (Patel et al, 1998; Brownfoot andAssociates, 1998).
This conceptual frame has implications for howAsian families understand dementia relatedneeds. The project identified the almost universalnegative perception of older Asians withdementia as ‘behaving in a child-like way’ and‘losing their senses and ability to understand’. Inits early stages, dementia is often regarded as a‘normal’ part of the ageing process and as notamenable to treatment or other intervention. This perception, coupled with the lack ofknowledge about treatment and services, acts asa powerful barrier to both users and carersseeking help or advice.
A lack of understanding of dementia cannegatively affect the quality of care provided byfamilies (Katbamna et al, 1997). Indeed, therewas a tendency among some carers to blamethe relative for his/her symptoms:
‘I don’t know why she does and says the thingsshe does, I don’t know why God is punishing meor how long it’s going to go on .... She isn’t mymum anymore and I wish God would just takeher away from me now.’
36
Cultural BeliefsA powerful set of findings relate to the roleplayed by cultural beliefs. That there isreluctance among Asians to ask for help is notsurprising given their cultural expectations(Seabrooke & Milne, 2003). Asian children arebrought up in an environment that places greatemphasis on the importance of being self-sufficient and standing on ‘one’s own feet’throughout life. An embedded desire to portrayan image of well-being to those outside theimmediate family is also strong as is the need tohide the existence of mental health problems.Research exploring the latter issue identifiesdamage to marriage prospects of children in thefamily as an underpinning cause (Patel, 2000;Wellard, 1999). The related stigma associatedwith acknowledging mental ill health isparticularly negative for older people withdementia and contributes to the sense of familyduty to care, whatever the impact on the carer aswell as to the noted resistance to seeking helpfrom services. A number of comments madeduring the fieldwork support these findings, forexample when referring to an Asian lady in hernineties one GP said:
‘She needs more help and more care but thefamily don’t want to know as they are concernedabout what people will think.’
Confidentiality is a particular issue for Asians,especially in a community as close as this one;most community members would acknowledgethat, culturally, Asian people tend to talk abouteach other’s business.
Diagnosis of Dementia Recognising the symptoms of dementia by theindividual or their relatives is widely noted as aprerequisite for diagnosing and treating dementiain its early stages (Milne et al, 2000). Earlydiagnosis is linked to health and social caresupport for users and carers and offers asignificant opportunity to plan ahead and putone’s affairs in order (Milne and Wilkinson, 2002).One of the specific aims of the NSF for OlderPeople is to facilitate early diagnosis as it, ‘...gives access to treatment, allows planning forfuture care, and helps individuals and theirfamilies come to terms with the prognosis’(Department of Health, 2001). The NSF goes onto state that the early detection of dementia isparticularly important for those with a vascular
dementia as two of the known risk factors -hypertension and diabetes - are treatable.Treatment can improve cognition and delay orterminate recurrent cerebral infarctions (Amar & Wilcock, 1996). That these are particularvulnerabilities for older Asians makes the needfor early diagnosis and treatment imperative.
The fact that many Asians ignore, or fail toacknowledge, the early symptoms of dementia,results in missed opportunities. The finding thatmost Asians with dementia only come to theattention of services at an advanced stage whenthe potential to offer preventive treatment is verylimited, confirms this. A second consequencerelates to family care; carers tend to seek help ata later stage in the dementia care trajectorywhich creates higher levels of stress and reducesquality of life for both carer and cared for(Chryssanthopoulou & Milne, in press).
The study identified a number of challengesfacing GPs who tend to be the first port of callfor Asians with concerns about dementia. Thelack of willingness amongst many Asian patientsand their families to acknowledge dementiasymptoms, coupled with the pressures of theaverage GP workload, undermines the facilitationof early diagnosis. That many GPs do not regarddementia care as a priority is also a disincentive:
‘Asians accept minor degrees of memoryimpairment as a normal part of old age. I ammuch more concerned about things such asdiabetes, hypertension and stroke for which I seelots more patients. Doctors generally will be moreconcerned with diseases that are seen in youngerpatients for which they can save lives.’
Diagnosing dementia can of course beproblematic in people from ethnic minorities,particularly if service users do not speak thesame language as the assessing practitioner.Moreover, the standard ‘tests’ used for detectingdementia may not be culturally appropriate andcan lead to inaccuracies in diagnosis as well as areluctance to ask for help due to fear of stigmaand of receiving a label of ‘madness’.
Overall then, despite the emphasis placed onearly diagnosis by research and policy this studysuggests that older Asians do not seek out, orroutinely receive, early diagnosis of dementia orpreventive intervention. The urgency to address
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this deficit is fuelled by the fact that two of thecauses of vascular dementia are treatable whenpresented at an early stage.
Access to Services Service providers in the area, particularly thoseworking in the field of dementia, are keen to seean initiative designed to improve access to, and the quality of, dementia related services for people from the Asian community. Manypractitioners are already aware that the numberof Asians using their service does not reflect theactual percentage of Asians with dementia in thelocal population and that more needs to be doneto improve accessibility to services. The need tobreak down the barriers between the Asiancommunity and service commissioners andproviders, has been identified as a priority, ashas the development of specialist carespecifically for the current generation of olderAsians with dementia.
The lack of knowledge among minority ethnicgroups is not the only barrier to accessingservices; a lack of knowledge among health careworkers and other professionals, about thelifestyles, health, religious and cultural needs ofminority communities can also present as adisincentive to the uptake of services. Languageand communication difficulties, transport issues,charges for services, the complexity of the caresystem, lack of accessible information andlimited GP referral on to secondary health careor specialist support services are also noted.
Another significant barrier relates to an issuenoted above; it concerns breach ofconfidentiality by service users and workers.This finding suggests a rather too permeablerelationship between services and the widercommunity and that information shared in aservice context may be discussed outside ofthat environment. Staff may not adhere carefullyenough to a professional code of conduct whichensures the protection of users and carers(Milne, 2002). One carer noted: ‘everyone knowseverything as soon as you tell one staff member.’
A number of workshop participants hadexperienced specific breach of confidentiality inthe day centres in NW Kent where largenumbers of elderly Asians and staff membersare present. Considering the stigma related todementia and the fact that families go to great
lengths to keep a diagnosis of mental illnesshidden, this may have serious consequences forolder Asians with dementia and their families. It also raises the importance of training.
Many service providers acknowledged that localmainstream provision for dementia service userswas neither easy to access nor appropriate forpeople from the Asian community. Theygenerally attributed the low uptake of theirservices to a mismatch between the linguistic,cultural and religious needs of the communityand their provision. In contrast, the project hasalso identified the existence of attitudes, amonga minority of service providers, that are unhelpfulto the agenda of encouraging people fromethnic minorities to take up services. Theseattitudes were reflected by comments such as:
‘Anyone can use this service, there are norestrictions to any particular groups’
‘Everyone is equally welcome here.’
Such attitude assumes that the needs of peopleare the same, regardless of their ethnicity andexperiences. It also gives rise to the premisethat the service is ‘fair’ as everyone is treatedthe same. However, providing the same servicefor everyone, when in fact the needs aredifferent, cannot be equated to providing anequitable service since the outcomes of usingthe service may be very different for serviceusers from different community groups(Blakemore and Boneham, 1994). Furthermorethis approach assumes that everyone will readilytake up the service provided; if they do not, it isseen only as a cultural issue.
In terms of the services that are currently usedby Asian elders and carers, it is clear thatservices run for members of the Asiancommunity and, to a lesser extent thoseservices that employ Asian staff, are accessedmore readily and are more appropriate. Asianday care services are particularly highlyregarded as are the Sahayak project and theAdvocacy Network. The meeting of linguisticand cultural needs is important; among otherfactors, this includes attention to religiousissues, hair, diet and gender and age specificpractices. The fact that day services are notspecifically designed or staffed for the care ofpeople with dementia raises the issue of quality
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of care and highlights the greater acceptabilityof using ‘generic’ Asian services or medicalservices rather than services that have the labelof ‘mental health’, ‘psychiatric’ or ‘social care’.For example, the facility for dementia patients atStone House Hospital is regarded as relativelyacceptable because it is a ‘medical’ and not justa mental health unit.
Support Needs of CarersBefore going on to discuss the project findingswith regard to the support needs of Asian carersit is important to acknowledge that manydifficulties are encountered by all carers ofpeople with dementia (Milne et al, 2001).Published studies have suggested that in manyrespects the experiences and needs of minorityethnic carers mirror those of carers in the whitecommunity (Atkins and Rollings 1996). However,evidence also suggests that there are somedifferences in their experiences. These areassociated with religion, culture, socio-economicstatus and being a minority within a majoritypopulation. Furthermore, the experiences andneeds of ethnic minority carers are shaped bythe level of formal and informal support(Katbamna et al, 1997) including reluctanceamongst Asian carers to make use of supportservices.
Asians who are caring for a dependent familymember do not perceive themselves as ‘carers’but as a daughter, daughter-in-law, or spousewho is simply ‘doing their duty’. However, thecost of fulfilling the care responsibilities can beimmense for the main carer and sometimes forother family members as well. Many either giveup work or cut down to part-time employment toaccommodate the demands of caring (Milne andWilliams, 2003). This was also apparent in theStudy Area and even though the carers wereunder enormous stress, they were unwilling torelinquish their caring role completely unless itwas to another trusted relative. Whilst somecarers found the thought of transferring theirrelative to a ‘residential home’ objectionable,other members of the community didacknowledge that the advanced symptoms ofdementia may require this type of support. Thelong-term facility for dementia patients at StoneHouse Hospital was acceptable and sometimeswelcomed by carers as it not only provided carebut also fulfilled the medical needs of the olderperson. It is noted that hospital services are free
in contrast to the high cost of residential andnursing care. Furthermore using hospital serviceselicits sympathetic responses from othercommunity members as opposed to thereprehensible attitudes to ‘putting him/her in ahome.’
Many respondents commented on the need forcarers to have breaks from their caring role. The finding that carers wanted respite from theircaring role and had not been offered any wasinteresting. The fact that respite care is availablein NW Kent suggests two things: thatassumptions about Asian families ‘looking aftertheir own’ continues to influence serviceproviders and that Asian carers remain reluctantto ask for help even when it is so evidentlyneeded. So far service planners have tended tobe largely reactive to the needs of Asian carers;they need to become more proactive and tacklethe underlying issues of diversity and equalopportunities.
Inter-generational ConflictWhilst not directly addressed in the fieldwork toany significant extent the role of inter-generational conflict cannot be underestimated inconsidering the role of the family in meeting theneeds of older Asians with dementia.
A number of Asian professionals identified theincreasing level of conflict between theexpectations of the older generation Asians andthe aspirations of their younger secondgeneration offspring. Having grown up in aWestern environment, the younger generationhave engaged with the indigenous population farmore than their parents; they tend to havedifferent priorities, beliefs and values, whichcreates a cultural conflict between the‘traditional’ and the ‘Western’. This clash ofcultures has undermined family bonds,assumptions about inter-generational reciprocityand traditional support structures. The marriageof younger Asians to partners from other areas ofGreat Britain is of particular significance giventhe nature and patterns of family care in Asiancommunities referred to earlier in this report. One Asian professional commented:
‘Asian elders come to me often and say, thefamily unit has broken up, the children don’tcare... they don’t want to live in the family unit orlook after their parents any more.’
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The pattern of younger adults no longer wishingto live with their parents/parents-in-law postmarriage is supported by the findings of a recentsurvey by Presentation Housing in NW Kent. The ‘2000 Black and Minority Ethnic Housingand Community Needs Survey’ reported asignificant level of increased demand forseparate accommodation amongst youngerAsians over the next five years (Presentation,2000). To illustrate, one 23 year old malerespondent stated: ‘... my parents don’t see the boundaries. They think they will just see me saying yes toeverything, but frankly I do have a life. I don’tthink I will be living with them in five years time,but to them it’s as though I will be living in thesame house all my life’ (Presentation, 2000, p63).
The changing profile of the Asian community hasimplications for service development for olderpeople with dementia and future patterns offamily care.
Raising Awareness about Dementia The ‘Culture and Care in Dementia’ study haspowerfully evidenced the positive role and valueof educational workshops and awareness raisingsessions. A number of issues, related to thedevelopment and nature of these workshops,requires analysis and is discussed below.
Imparting information about a stigmatising andhidden illness, that is associated with a host ofnegative assumptions about the individualsufferer and their family, is a slow and painfulprocess (Lokare, 1999). The importance ofbalancing a need to take account of the culturaland linguistic milieu, whilst simultaneouslyoffering a different conceptual model and way ofviewing support for managing and treating theillness, cannot be overemphasised. Also, offeringa number of workshops in different settings, to arange of audiences, over a significant period oftime facilitated the educational process.Combining formal presentation with a guideddiscussion also worked very well. Most peoplehad to hear the message several times beforethey identified themselves to the project. As theproject progressed, more and more communitymembers and leaders, staff and family carersbecame familiar with the issues and were able toassist with the dissemination of knowledge.
One of the most successful means of raisingawareness was by linking into the local Gurdwarain Gravesend. The presentation at the GuruNanak Gurdwara, which was also broadcast overthe radio, reached more people than wasexpected and led to several carers andconcerned individuals coming forward forinformation and help. The other resource thatwarrants mentioning is the very effective video -‘Dementia Ki Hai’ - produced by Alzheimer’sConcern Ealing. This video was particularly wellreceived by many older Asian people who couldunderstand and relate to the carers and serviceusers depicted in the video clips.
The effectiveness of raising dementia awarenessamong the Asian community and introducing theproject to GPs, is reflected in the increase in thenumber of referrals to both the psycho-geriatricservice and to ADSS. Nine months after the startof the project, one of the local psycho-geriatricians commented to the researcher thathe had had four Asian patients referred to hisservice in the previous month alone.
One of the most important roles of educating thecommunity about dementia is to prevent neglectof older Asians with the illness (Wilkinson, 2002).The organisation ARDSI, from whom this projectsought advice about raising awareness, hasidentified a number of cases of dementia in Indiawhere older people were being ill-treatedbecause of a lack of awareness of the illnessamong family members.(www.alzheimerindia.org/ardsi_vision.html).
Lack of awareness has also been noted as acause of neglect in the UK (Killick and Allan,2001). Whilst the authors have no reason toassume neglect of older Asians is occurring inNW Kent, a number of comments fromprofessionals and carers do raise concerns:
‘Yes, Asian carers do come forward withconcerns, there’s an Asian lady in her ninety’swho is at home all day on her own and needs fulltime care, but the family don’t agree as they areconcerned about what people will think’- GP
This project has covered significant ground tointroduce the topic of dementia to the Asiancommunity. However, unless measures are takento ensure that these messages about dementiaare repeated, it is the likely that many Asian
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elders with dementia will continue to remainhidden and their carers will continue to beunsupported.
Service Development It is widely acknowledged that simplypublicising services and declaring them to beavailable to ‘all’ is of little value if the servicesare unsuitable, inflexible and incapable ofmeeting the specific needs of minority ethnicusers and their families (Baxter, 1988). Bould(1990) reported on the experiences of a numberof ethnic minority service users - includingsome Asians - who felt ‘out of place’ in a daycentre where activities such as reminiscencegroups were geared towards the majorityexperience of white elders.
In the Study Area, where Asian elders havebeen placed into a predominately ‘white’service, it is clear that neither the service usersnor the providers are satisfied with the situation;many respondents identified a distinct ‘lack offit’ between services and the Asian community.We have noted the importance of sharing acommon identity and culture with a serviceand/or its staff. Other important issues includeease of access, limited charges, greateravailability of culturally appropriate day andrespite care and a greater level of awarenessamongst health and social care workers aboutthe lifestyles, health, religious and culturalneeds of older Asians and their carers. Fromtheir extensive work on various dementiaservices, Patel et al concluded that in order toprovide good dementia services to people fromminority ethnic groups, professionals have to becompetent in both dementia care and in issuesrelating to ethnic minorities (Patel et al, 1998;Patel, 2000).
In terms of planning and commissioning futureservices, findings suggest that at least for thecurrent generation of older people, separateservices may be required. Language andcultural issues make this imperative. As notedby one Asian professional:
‘Separate services are going to be needed untilmainstream services are culturally sensitiveenough... The majority (not all) have financialconstraints. You also get the wealthy who won’tspend the money. They fear that Social Serviceswill take away their house etc. to pay for the
service. The younger generation are takingadvantage of the situation. They know the statewill look after their relative’.
In the Report’s final section the authors move todiscussing the implications of the researchfindings for future service and relateddevelopments.
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Section 5: Implications and Conclusions
There are two key areas that require discussionin this Section: future service development andtraining issues for health and social care staffworking with older Asians with dementia andtheir carers.
Commissioning Dementia Services forthe Asian Population in NW Kent
New government initiatives have highlighted theneeds of people from minority ethnic groups tobe able to access appropriate dementia services.This means that the assessed needs can only bemet if the services being offered are acceptableto the individual, i.e. they must match theexpectations of the service user in terms of thelanguage, culture, religion and spiritualrequirements of the individual.
Despite these recent policy developments andthe ageing profile of the Asian population in NWKent, few specialist services have beendeveloped to meet the needs of ethnic minorityelders with dementia or those of their carers(Department of Health, 2001). Up until thisproject only a handful of Asian people withmemory problems had presented to dementiaservices in the local area and all of these were inthe advanced stages of dementia. In part, thisreflects the hidden nature of dementia in theAsian community as well as an ongoingassumption that Asian families ‘look after theirown’ (Department of Health, 1998).
This project has highlighted a number of specificbarriers to service usage that need to beaddressed by service commissioners andplanners. In the current context, it is clear thatAsian elders and their families are only willing touse those services where their linguistic andother cultural needs are met. The fact that theseare generic services that are neither appropriatenor resourced adequately for managing peoplewith dementia, is recognised by service providersand, to some extent, users and carers. Goodquality care of older Asians with dementiarequires competence in both dementia andethnicity; it is not sufficient to have Asian staffproviding care services to Asian users, they alsoneed to have an understanding of the disease
and be trained in managing people withdementia.
There are also a number of specific issuesaround diagnosis and referral on to otherservices. The hiding of dementia and thesomatisation of symptoms by Asian patientsmake diagnosis of the illness by GPs verydifficult. The lack of appropriate assessmenttools, the complexity of the referral system andthe lack of clear follow up protocols are alsounhelpful. A specific criticism relates to limitedpreparedness amongst GPs to refer Asianpatients with dementia to specialist services; this may result from resistance on the part offamilies to acknowledge dementia in a relativebut the present situation is denying expert helpto older Asians with dementia (Seabrooke andMilne, 2003). GPs need to be aware of thecontrol they assert over the access to otherservices by their patients; they also need to beaware that not making a referral may actuallylead to failing a patient. The increase in referralsof Asian patients to the psycho-geriatrician overthe project period, does suggest that raising theprofile of the whole issue helps ensure access tosecondary or specialist services. On a relatednote, GPs unequivocally held the view that theywould find training in the specialised field ofdementia and its diagnosis useful.
In addition, there are barriers intrinsic to the Asiancommunity. People from this community need torecognise that dementia is an illness and acceptthat it is not to be ashamed of. Furthermore, thecommunity needs to understand that the qualityof life of dementia patients and their carers canbe greatly improved by accepting help andservices from local providers. The findings of thisproject have clearly illustrated the benefit ofraising dementia awareness through workshopsand focus groups among the communitymembers. However, unless there is ongoinginvestment in an educational cycle incorporatingthis type of workshop, learning and informationsharing will cease and there is a risk that Asianelders with dementia and their carers will revertto cultural norms and slip back to being hiddenand marginalised.
In terms of specific services, Asian respondentshave stated what they would like to seedeveloped. It is evident that carers find day carevery useful and would also benefit from respite
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care that is culturally appropriate. These servicesenable carers to work and/or tend to their ownfamilies. To date, service planners in NW Kenthave tended to be largely reactive; they nowneed to become more proactive in identifyingand addressing the needs of older Asians withdementia and their carers. Many carers aresupporting a relative with 24 hour needs and areunder considerable strain; the fact that they feelunable to ask for help is a consequence ofpressure from their own community as well as alack of appropriate services for themselves ortheir relative (H.M Government, 1999).
In Kent, the County Council has a specificcommitment to meeting the health and socialcare needs of older people from BMEcommunities (Kent County Council, 2002).Included in its service development plan is a jointproposal between Dartford, Gravesham andSwanley PCT and Kent County Council SocialServices Directorate to implement a new modelof Health and Social Care for Older People in theGravesham area. The ‘Gravesham CommunityProject’ will redevelop the Gravesend and NorthKent Hospital site. The aim of this is to provideinnovative and culturally sensitive health andsocial care provision, that promotes theindependence of older people. A part of thisdevelopment includes specific services for ethnicminority elders including those with dementia.The proposed provision includes ten residentialcare beds and a social services day care servicefor seventy users per week. Althoughconstruction work for the facility has not begunyet, the service is planned to be operational atthe end of 2005.
Another service development emanates directlyfrom need identified as a consequence of the‘Culture and Care’ project. Throughcollaborative working with a range of careagencies over the course of the project, ADSShas developed a proposal to provide anoutreach and awareness raising servicetogether with an appropriate and culturallysensitive day care service for older Asians withdementia. It is planned that the day care servicewill be based at Presentation House inGravesend and will be a joint venture betweenADSS, Presentation House and Kent SocialServices Department. ADSS is currently seekingfunds to develop such service provision.
Although these are positive developments,considerable gaps in both health and socialcare services remain, not least of which isdeveloping a clear care pathway for olderAsians with dementia and their carers at everystage of the dementia trajectory (Department ofHealth, 2001).
Training Issues for Managers and Service Providers
Training and education of staff has a key role toplay in facilitating change and encouragingaccommodation of ethnic minority needs andpractices. Certainly research in the field ofdementia care identifies training around culturalawareness as ‘inadequate for many managersand staff throughout the health and social caresystem’ (Daker-White et al, 2002). This project’sfindings reinforce this view.
Whilst Kent Social Services is aware ofshortfalls in race and equality awarenessamongst its staff, more needs to be done toaddress the specific issues around dementiaand culture in the Asian community. Themesinclude: • Communication issues are particularly acute
for people whose first language is notEnglish; even if they speak English they arelikely to lose this skill when they developdementia
• In order to deliver effective care to olderAsians with dementia and their carers, staffneed to appreciate the cultural and religiouscontext of ‘need’ and the significance ofcustoms
• Whilst Asian elders have particular culturalneeds, e.g. for diet and hair care, individualneeds also vary considerably withinpopulations and across communities
• The needs of families and carers have to berecognised and addressed alongside those ofthe person with dementia. As older Asiansoften live with their children, it is crucial towork with them in accessing care anddesigning care packages.
• Ongoing training and support is needed forstaff working in all services that serve olderAsians with dementia. Staff in ‘generic’services, such as day care for physically frailelders or specialist Asian services, can oftenfeel unsure of how to deal with dementiaissues. Emphasising the importance of
communication and individualised person-centred care is crucial (Kitwood andBrendin, 1992).
• Recognising the importance of confidentialityis a very important issue for all staff but maybe a particular issue for Asian staff who maytend to regard the boundaries between the‘personal’ and the ‘professional’ as ratherpermeable.
Whilst sharing the same ethnic background asservice users can be useful, it is theunderstanding of the language and customs andthe ability to be empathetic to individual needsand sensitive to carers that are keycharacteristics of a good worker in dementiaservices. These may not be training issues per sebut are about staff appointments, job descriptionsand roles. It is also important to recognise thatthese issues are not located only at the front line;it is equally relevant to raise awareness andeducate managers and service commissioners.
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Reflections on the Project
No report would be complete without reflectionon the project’s strengths and weaknesses.
Certainly, this research study has resulted in aninnovative piece of work being carried outsuccessfully within a discrete Asian communityin NW Kent. It has begun the important processof shifting perceptions about dementia withinthe community and has led to increasedawareness of dementia related needs andservice deficits. It instigated a rapport betweenADSS and minority community groups andother organisations supporting Asian elders; it has also promoted understanding of theneeds of older Asians with dementia amongservice providers and commissioners. Thereasons for the under-representation of olderAsians in dementia services have beenidentified and the barriers have been located aslying both within the service system and theAsian community itself. Further, the project hasgenerated data that should be useful in theplanning of services to meet the needs of Asianelders with dementia and has contributed to theresearch literature more widely. A number of themessages and conclusions of the work are alsoof value to care agencies and Asiancommunities on a national basis.
More critically, the project team had notanticipated the complete lack of awareness of
dementia issues in the Asian community at thestart of the project. Much time had to be spentraising awareness and challenging the stigmaassociated with dementia, before people felt ableto come forward with their concerns. As a result,the interviews with respondents, particularlycarers, began later in the project than wasplanned and delayed the analysis of the findings. In fact a small number of people who cameforward later on in the project could not beinterviewed due to time constraints. Anotherissue related to carers. For some, speaking tothe project researcher was the first opportunitythey had ever had to discuss their concernsabout caring and the needs of their relative.Many welcomed the opportunity to talk. This resulted in the interview not only beingconsiderably longer than anticipated but alsorather challenging to conduct as carers shared a wide range of information, some of which wasnot directly relevant to the project.
The number of GPs who agreed to beinterviewed was rather small; canvassing andfollowing up GPs consumed a great deal of time.However, the reported findings were supportedby significantly more GPs than the projectinterviewed via wider discussions and meetings.Finally, despite many attempts to secureinterviews and repeated reminders to completethe questionnaires, the research study is lackingthe input of some key service managers fromKent Social Services Department.
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Conclusion
The ‘Culture and Care’ project has explored achallenging and complex issue within an Asiancommunity in NW Kent that has remained largelyinvisible to dementia care services since thecommunity was first established in the 1940’s.The project has broken new ground andestablished a bridge between service providersand the community, as well as opened up adiscourse about dementia with communitymembers, service users, carers and serviceproviders.
The project identified clear evidence of dementiarelated need amongst older members of thecommunity and their families. It also identifiedbarriers that exist within the community itselfand the service system, which will requireongoing attention if effective and culturallyacceptable services are to be developed.Investment in awareness raising and informationworkshops is vital, as is training for health andcare providers - including GPs - arounddementia and culture in the Asian community.
There is significant potential to take forward the work started by this project. It identified agenuine concern among service providers tomeet the needs of the Asian populationeffectively. Kent County Council is alsocommitted to providing effective services forpeople from BME communities living in its areaand has embraced the challenge of introducingculturally sensitive care for older people (Kent County Council, 2002). However, withregard to dementia care for the Asiancommunity, there still remains a significant gapin provision.
In light of the growing number of older Asianswith dementia in NW Kent, it is imperative thathealth and social services commissioners andproviders adequately resource existing servicesto ensure they meet their specific needs. Thereis also a need to review the possibility ofdeveloping separate services where necessary.There is a linked need to extend, and ensureaccess to, support services for Asian carers.
This service development challenge requiresmore than simply offering mainstream care to allregardless of age, race, religion or culture. It requires a coherent and focused multi-agency
strategy to educate, inform, engage, ensureaccess to, monitor effectiveness of and assurequality of services that meet need in anacceptable and culturally appropriate way.Working in partnership with the Asian communityis a core dimension of this strategy, includingtaking account of the views of frail older people,carers of people with dementia and current BMEworkers and service providers (Okuyiga, 1999).Existing commissioning structures may need toreview how far this is facilitated at present; therole of ongoing outreach work with thecommunity is also a vital component.
Overall, the project provides evidence ofdementia related need, clear direction of specificways to meet that need and a framework forworking with the Asian community, which takesforward dementia education and informs servicedevelopment. It is essential that the work of thisproject is taken forward alongside existingservice development to ensure that the needs ofolder Asians with dementia and their carers areeffectively met in NW Kent.
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1 The Project
1.1 Background Information on Ethnicity & DementiaLittle is known about the prevalence andmanagement of dementing illnesses in minoritycommunities. At present, those who aredeveloping dementia belong to the generationwhich immigrated to the UK; they are thus muchmore likely to speak their language of origin,have limited knowledge of dementia and havelimited contact with services.
Although ethnic minority carers appear tocontend with similar types of symptoms arisingfrom dementia, a recent investigation of 30carers from ethnic minorities found thatawareness of dementia was relatively sparse,particularly among South Asian carers. Most ofthe carers were looking after relatives withadvanced dementia without formal support. This appears partly due to a general lack ofawareness of services but also to fear ofinstitutional racism and poor quality of provision.A recent SSI inspection of services to peoplefrom ethnic minorities found that many areaswere providing inadequate support to olderpeople with mental health problems and theircarers.
A number of recent policy documents - mostnotably the National Service Framework for OlderPeople - prioritise meeting the mental healthneeds of older people from ethnic minorities andtheir families. In particular the report states that:‘Older people from black and ethnic minoritycommunities need accessible and appropriatemental health services’ and emphasises theimportance - and effectiveness - of identifyingdementia at an early stage.
1.2 ADSS and North West KentThe charity ‘Alzheimer’s and Dementia SupportServices’ (ADSS), based in Gravesend, NorthWest Kent, is a relatively small voluntaryorganisation which offers practical and emotionalsupport to people with Alzheimer’s disease andother dementias, and their carers.
The Foundation has chosen to partner ADSS as:• Its experience of attempting to open up its
services to minority ethnic groups illustratesmany of the issues identified above. While thearea contains a significant Asian population(5.3% rising to 8.4% in Gravesham, Census 1991) neither Asian older people northeir families make use of the ADSS. Attemptshave been made to make the services moreaccessible to this group: for example, ADSShave translated some information into Punjabiand have spoken with the providers ofservices in the locality which do offer supportto Asian older people with dementia. However,to date, these efforts have been unsuccessful.
• There is a voluntary and statutory network inthe area, which provides a good platform forexploring the wider issues of policy andpractice. ADSS has links with the local ‘RaceEquality Council’ and the Dartford &Gravesham ‘Ethnic Forum for Mental Health’ amulti-disciplinary policy and strategic planningforum. These bodies and local social servicesdepartments (which provide two-thirds ofADSS referrals) have recognised the need foran effective early intervention service for theAsian community - perhaps through adaptingand/or extending ADSS’s services.
1.3 AimTo better understand the needs of older Asianswith dementia and their families in order toensure the ADSS and other services meet needsmore effectively and to influence local - andwhere appropriate national - policy and servicedevelopment in this field.
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Appendix 1
Alzheimer’s and Dementia Support Service, Gravesend, Kent - Project Plan
Identifying the dementia related needs of older people from the Asian community and their carers
1.4 ObjectivesOn a local level, through the project in North-West Kent • Identify the nature, extent and mental health
needs of the older Asian population • Identify the services Asian older people with
dementia (and their carers) access and whichkind of support they offer
• Identify what Asian older people and their carerswant from services and how ADSS couldadapt/extend its provision to this community
1.5 Process• Conduct a ‘mapping and fact finding’ exercise on
the current needs and services for the older Asianpopulation in North West Kent
• Draw together the issues that need to beaddressed to develop effective services for olderAsians with dementia and their families
1.6 Timetable:
• Months 1-6 Awareness Raising Activities & Review of Population Need & Services
• Months 6-18 Sampling & Conducting Fieldwork
• Months 18-20 Data Analysis & Mapping the Dementia Related Needs of Asian Elders and their Carers
• Months 21-24 Writing Project Report and Disseminating Findings
1.7 National Relevance The project findings and outputs will be ofsignificant relevance to wider UK servicedevelopments in two ways.
1.7.1 They will be of specific value to thoseagencies developing - or considering thedevelopment of - services to meet the needs ofAsian older people with dementia and their families.The ‘lessons learned’ about raising awareness andfacilitating access to dementia support services byolder Asian people and their carers will beparticularly useful. Services for older South Asianpeople with dementia and their families/carers areunderdeveloped in the UK and a project of this typewill be able to offer guidance and a framework foreffective service development.
1.7.2 Secondly, the outcomes may be useful toservices being developed to meet the dementia-related needs of other ethnic minority groups.Although the focus of the project is on a SouthAsian community, the project’s outcomes will have
wider implications for ensuring the culturalappropriateness and accessibility of services forolder people from a range of ethnic minorities. Thisis valuable from both a service development andpolicy perspective (Department of Health, 2001).
1.8 Structure & Management of the Project The researcher is of Asian origin and speaks Hindi &Punjabi. She is based at ADSS in Gravesend and ismanaged by Carol Smith, manager of ADSS, withresearch supervision provided by Alisoun Milne(Consultant, Mental Health in Later Life Programme& Senior Lecturer in Social Gerontology, Universityof Kent).
1.9 Period of ProjectThe project is running for a 24 month period fromFebruary 2002 to January 2004.
48
Section 1: About the practice
• Name and address of GP and the practice:• Size of Practice: No. of doctors, patients and
practice nurses• Ethnicity of the various staff at the practice
(clinical & admin)• Languages spoken (by clinical & admin staff)• No. of Asian patients at the practice: Total and
those over 60.
Section 2: About the patients and dementia
(For all the following questions gather informationfor both the general population and Asiansspecifically)
• How often do Asian older people present withmemory problems and how does this comparewith the rest of the population?
• If there is a difference, why?• Do you find that Asians tend to present at later
stages of the illness?• What symptoms do Asians bring to your
attention if they are not familiar with‘dementia’?
• How does this differ (if at all) from othergroups and why?
• Do the carers come forward with theirconcerns and if so, is this more or less oftenamong Asians?
• Many older people associate memoryproblems as a normal part of the agingprocess. Is this more or less often amongAsians?
• How do you respond to people who haveaccepted the symptoms as ‘normal’?
• How do you deal with people who presentwith forgetfulness or more specific memoryproblems? Does this differ in any way forAsian patients?
• What course of action/treatment do you followfor these patients? Does this differ in any way
for Asian patients?• What services are available locally for patients
with dementia?• What services if any do you refer these
patients to?• What information do you have in your waiting
area to make patients aware of other servicesin the area?
• If you deem that a referral is necessary, towhich specific professionals do you refer yourpatients
Section 3: Views and opinions of the GP
• Are there any gaps in services for people withdementia?
• What additional services would you like to seein place to help with the care of Asians elderswith dementia?- for patients and for carers.
• In your opinion could new services for Asianswith dementia be integrated into existingmental health services? Yes/No
• If yes, what changes/improvements need to bemade to make the existing services to makethem more appropriate to the needs of Asianpeople?
• There is very poor uptake of ADSS servicesand other dementia services by the Asiancommunity. In your opinion, is this because of a. ignorance about the servicesb. cultural differencesc. language problemsd. other reasons.
• In your opinion is there a need among healthand social service professionals for furthertraining around dementia and culturalawareness?
• Do you have any other comments?
49
Appendix 2
Needs of Asian older people with Dementia and their carers in the Dartford and Gravesham area
Guidance Questions: Interviews with General Practitioners
Section 1: About the Department
• Name and address• Size of team; No. of clients; age group of
clients; ethnicity of clients• Ethnicity of the various staff in the team• Languages spoken (by staff members)• How do people access the services?• No. of Asian clients• Role of the team• Services provided and charges for services• Financed by• Assessment of needs• Any work with carer.
Section 2: About the service users and dementia
• If Asian patients are not coming forward forhelp, why not? What can be done to changethe situation?
• How are the services received by people ofminority ethnic communities? - What do youdo to get feedback on your services?
• What methods are being used to attractclients?
• What issues/ triggers do clients bring to yourattention?
• What issues/ triggers do Asians bring to yourattention if they are not familiar with‘dementia’?
• Does this differ from other groups? Why?• What services are available locally for patients
with dementia? • What other services if any do you refer your
clients to?
Section 3: Views and opinions of the Interviewee
• Any literature in foreign languages? • What are the barriers in accessing your service?• In your opinion, what can be done to enhance
uptake of services by the ethnic minorityclients?
• In your opinion could new services for Asianswith dementia be integrated into existingservices? Yes/No
• If yes, what changes/improvements need to bemade to make the existing services to makethem more appropriate to the needs of Asianpeople?
• What additional services would you like to seein place to help with the care of Asians elderswith dementia?
• Is there a need for specific services for carers?• There is very poor uptake of ADSS services
and other mental health services by the Asiancommunity. In your opinion, is this because of:a) ignorance about the services; b) culturaldifferences; c) language problems; otherreasons
• Is there a need among health and socialservice professionals for further trainingaround dementia and cultural awareness?(give examples)
• Do you have any other comments?
50
Appendix 3
Needs of Asian older people with Dementia and their carers in the Dartford and Gravesham area
Guidance Questions: Interviews with Health Professionals & Service Providers
51
Appendix 4
Needs of Asian older people with Dementia and their carers in the Dartford and Gravesham area
Guidance Questions: Interviews with Carers
Section 1: Client details
• Name, Address, Telephone & ID number:• Date of birth or Approx. age• Ethnicity • Languages (spoken/read)• Name of GP• How long have you lived in: a) Britain
b) Current Area• What are your disabilities/illnesses?
Section 2: About the household
• Who lives in the house with you and do theyhave any disabilities or chronic illnesses?(Record relationship, age and any disabilitiesor illnesses
• Do you see anyone else on a regular basis,e.g. neighbours, friends, relatives etc?
• How is your care organised within your family
Section 3: About the service user
• How has the illness affected you? What can’tyou do now that you used to be able to dobefore?
• How is your care organised within your family• Please describe your daily routine • Have you ever been offered any of the
following medicines: Remynil, Exelon, Ariceptor Maxalon?
Section 4: About the carer(s)
• What help are you getting?• Do you receive any support from services or
from other family members?• What are your coping strategies?• What help would you like?• What help have you tried to get?
• What difficulties have you encountered in tryingto get help, e.g. language, religion, food,financial, culture, stigma, family membersobjecting to outside help, barriers within thesystem and others.
• Do you feel you’ve been given enoughinformation about your relative’s condition andhow to manage it?
• What issues have you been concerned aboutand spoken to your GP about?
• What information have you been given aboutservices for: a) yourself and b) your relative?
• Which services have you contacted and whatservices have been put in place?
• Would you or your relative use any of theexisting services such as: (with reasons)Residential homes, day centres, Sahayak,ADSS, Crossroads, Age Concern, districtnurses, social services, homecare, hospital orother?
• What additional service would you like for thecare of your relative?
• Do you know what benefits you are entitled to?
Section 5: With hindsight
• What help and information do you wish youhad had when you first realised that somethingwas wrong?
• What kind of help, e.g. homecare, respite,medical, hospital, etc. would you have liked?
• Who do you think the services should beprovided by- Asian specialist services orgeneral services? a) for current generation andb) for next generation?
Section 6: About ADSS
• Which of our services would you find useful?• Which would you not find useful?• How could ADSS extend its provision to take
account of you and your relatives needs?• Any other comments?
52
Appendix 5
On: Wednesday 20th August 2.00-4.00pm
At:
The Guru Nanak Darbar Gurdwara Clarence Row Gravesend.
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Gurdwara. Name ____________________________________ Telephone No: ______________________________ Number of places required: _________
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www.alzheimers-dementia.org.uk
The Mental Health FoundationUK Office83 Victoria StreetLondon SW1H OHNTel: 020 7802 0300Fax: 020 7802 0301Email: [email protected]
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© Alzheimer’s and Dementia Support Services, 2004
