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
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
• 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=Fy8EtYrhuGA
http://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
mheward@bournemouth.ac.uk
Dr Fiona Kelly
01202 962213
fkelly@bournemouth.ac.uk

Bournemouth University and the Dementia Institute (BUDI)

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