Bournemouth University and the Dementia Institute (BUDI)

www.bournemouth.ac.uk/dementia-institutewww.bournemouth.ac.uk/dementia-institute

Value of research involving people affected by dementia

Dr Michelle Heward and Dr Fiona Kelly

www.bournemouth.ac.uk/dementia-institute 2

What is research?

The systematic process of collecting and analysing information to increase our understanding of the phenomenon under study.

Two main types: •Qualitative research is exploratory, to gain an understanding of underlying reasons, motivations, processes etc.•Quantitative research is used to quantify the problem by way of generating numerical data or data that can be transformed into useable statistics.


Why involve people affected by dementia in research?

• People affected by dementia are the ‘experts’ on what it is like to live with the condition.

• People with dementia have reported feeling marginalised or excluded from their community so involving them in research may give them a voice and new purpose.

• Inform policy and practice.• Raise awareness, reduce stigma and discrimination• Improve the lives of others who develop the condition.


Challenges of researching with people affected by dementia

Research participants•Convincing ethics committees of the utility and possibility of working with people with dementia.•Requires excellent communication skills.•Requires flexibility, patience, sensitivity, compassion.•Ensuring their voice is heard.Research settings•Observing poor practice and empathising too much.•Placing an ethical stance over data collection.•Negotiating and engaging with stakeholders.•Remaining non-judgemental.•Leaving the setting.


Benefits of research with people affected by dementia

• Unique and sometimes surprising insights

• Lived experience• Humour and fun• Honesty

Photograph by Tony Marsh©Tony Marsh Photography www.tonymarshphotography.com


Some of our research and projects

• Fire safety innovations for people affected by dementia

• Ensuring physical and social environments meet the needs of people with dementia nearing the end of life

• BUDI orchestra


1. Fire safety innovations for people affected by dementia project

• Impairment, disability and dementia are substantial factors in increasing the risk of injury or death from fire in the home (US Fire Administration, 2006).

• Fire and Rescue Services (FRSs) provide a range of resources to suit divergent needs, however there is a lack of guidance for people affected by dementia, meaning the needs of this high risk group are currently not being met by all FRSs.



• Mixed methods study.• Online survey sent to all UK FRSs (n=55) to determine their existing work with people

affected by dementia. • Four focus groups: one with fire service professionals; one with other professionals; two

with people with dementia and family carers. Explored their experiences of home safety risks (including fire risks) and risk reduction strategies in the homes of people with dementia, and what they would like to see in guidance documents, resources and training programmes.



Aim to improve practice and outcomes for people with dementia living at home, by: - developing guidance that can be used nationally and internationally to help people affected

by memory problems or dementia to be safer in their homes;- enhancing the quality of life of people affected by dementia by enabling people to live

independently in their own homes for longer;- creating a training package that will ensure Fire and Rescue staff and volunteers, and

other practitioners who visit people in their own homes, are better equipped to work with people affected by dementia to ensure they are as safe as possible from fire risk.


2. Ensuring the physical and social environments meet the needs of people with dementia who are nearing the end of life

• What is the evidence base for designing for people with dementia who are nearing the end of their lives?

• What are the needs and wishes (in terms of the design of care settings) of 1) people with dementia who are nearing the end of their lives, 2) family members of people with dementia who are nearing the end of their lives and 3) practitioners caring for people with dementia who are nearing the end of their lives?

• What (if anything) needs to be changed in existing design principles to meet all their needs?


2. Methods

• A review of relevant literature.• 3 focus groups to explore key informants’ views on what

elements of the design of the physical environment would support good practice and a good death.

• 11-item list of desirable design features to support the care of people with dementia nearing the end of life; derived from focus group findings.

• A 2-stage survey of 21 academic and practice experts from Australia and the UK (architects, designers, dementia and palliative care professionals) to agree and amend design principles.


2. Final design considerations


3. BUDI orchestra

• Orchestra formed of people living with dementia, their carers, musicians and volunteers.• Led by a freelance musician.• 10 weekly rehearsals followed by a performance.• Evaluation involving structured observations, interviews

and questionnaires.


3. BUDI orchestra evaluation

You lose the time sometimes. No, it was just one of those things. I was admiring myself because I saw in fact that this is… very difficult playing the violin, you know… Sense of achievement. (Participant with dementia)

But it was good fun, and we were all enjoying it and laughing about it. So we could make mistakes together, and that worked really well… we're all in the same boat here, ladies, gents; let's just enjoy it. And we've got a couple of hours to enjoy each other, let's be together and all be in this together, and laugh. (BUDI musician)

Every individual has special needs, the people taking part today have exceeded in giving pleasure to all in this hall. (Member of the public following a performance)


Outputs from these projects

https://www.youtube.com/watch?v=Fy8EtYrhuGAhttp://www.theguardian.com/music/2015/jun/22/breakthroughs-in-bournemouth-how-the-bso-is-providing-relief-for-people-with-dementia


• Invitations to present design and end of life findings at Irish Hospice Foundation seminar and Cecily Saunders seminar and panel discussion. Publication and conference presentations.

• Fire Service now have dedicated e-mail address for crews concerned about well being of people with memory difficulties or dementia. Poster and conference presentations. Training being cascaded to fire crews in Dorset.

• BUDI orchestra reveals that people with dementia can learn new things and continue to have fun. Has generated lots of interest and media attention. Seminars, workshops and conference presentations, Twitter @aborchestras, people blogging: http://wellness.pittsburghsymphony.org/aging-creatively-with-music-the-budi-orchestra/

Impact


Acknowledgements

•Thank you to all our participants for sharing their experiences and views with us and for being involved with such enthusiasm in our projects.

•Thank you also to the various project funders and partners, including:

•Ethics approval for these projects was obtained from the Bournemouth University Research Ethics Committee.


Contacts

Bournemouth University Dementia Institute (BUDI)PG63, Talbot Campus,

Fern Barrow, Poole, Dorset, BH12 5BB.

www.bournemouth.ac.uk/dementia-institute

Dr Michelle Heward 01202 962538

[email protected]

Dr Fiona Kelly01202 962213

[email protected]

Date post:	17-Feb-2017
Category:	Healthcare
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Bournemouth University and the Dementia Institute (BUDI)

Healthcare