Louisa rabanal,

Living well with young
onset dementia
Humphrey Booth Resource Centre as a hub of excellence in a
system of support
6th August 2015 Professor Maggie Pearson, Director, Salford Institute for Dementia
Dr Tracey Williamson, Reader, Public Involvement, Engagement & Experience
Luisa Rabanal, Research Fellow, Young Onset Dementia
SALFORD INSTITUTE FOR DEMENTIA and SALFORD CITY COUNCIL

Overview
Young onset dementia (YOD) - introduction and psychosocial impact
Services for people living with YOD
Phenomenological research in YOD
Study aims and participatory action research approach
Participants and methods
Dissemination and impact

Young onset dementia – what we know
42, 325 people in
the UK (Prince et al.
2014)
Diagnosis <65 years of age
Frequent misdiagnoses,
e.g. stress, depression,
menopause
Variety of symptoms
Lengthy diagnosis
>Number of diseases
leading to dementia
in younger people

30 – 65 years
Responsibilities
Numberofrolesandoccupations
Age of individual
- Individual
(employment,
mortgage,
spouse, social &
leisure)
- Children
(dependent
children, may be
living at home,
require emotional
& financial
support)
- Parents (Elderly
parents to care
for /financially
support)
Psychosocial impact of YOD

“…it’s like you’re at home but you’re not
on their wavelength, if that makes any
sense? And that’s the hard bit. And the
more you try to be on their wavelength,
the more foggy you get…it’s that where
you have to think too hard to stay
normal that knackers you out.”
“I mean we were told when this all
happened that, you know, some of
your friends will disappear. Yeah, they
disappear. All, all these, you know
years of friendship, suddenly just goes
totally down the pan.”
“I’ve always worked in banking. I’ve always worked with
money. And I can’t even, add up money now…I get so
frustrated at not being able to do something, I mean I’ve
always been independent. I can’t even go to the shop on my
own now, because I don’t know how to cross the road.”
Rabanal, L. (2015). The impact of specialist day care for people with young onset dementia. Unpublished Master’s thesis in Occupational Therapy
Occupation
Family
Friends

Services – what support is available?
YOD specialist services remain scarce and patchy across the UK
Non-statutory/voluntary agency run support groups
Younger people with dementia are often excluded from working-age
mental health services
Specialist residential/24 hour care is even more limited
Lack of respite facilities

“…so I don’t have to put that
strong face on…because it,
you do, you put a front on for
your family and you’re doing
this, that and the other and
it’s hard. But here this is like
(exhales), you know, like a
steam cooker, it’s coming you
know, your pressure’s going.”
“…so the importance of doing a task, as
little as it may seem, it could be like a
marathon for us. And the benefit is you’re
also active because you’ve gotta think
about doing it even though it’s only putting
a bit of string in and rolling it around but
you’re getting that, that memory feeling as
well so you’re getting two things for the
price of one."
“Yeah, I thought I were gonna have
to ring for an ambulance because
he were laughing that much, he
couldn’t get his breath and he like,
went blue and I, then he set me off,
I were laughing cos he were
dying!”
Rabanal, L. (2015). The impact of specialist day care for people with young onset dementia. Unpublished Master’s thesis in Occupational Therapy
Why do we need
specialist
services?
Respite for the individual
Laughter is the best medicine
Occupation-focussed support

YOD research overview
In spite of the national challenge to tackle dementia, 25% of people living with the
illness hide their symptoms through shame and fear of social stigma (Bamford, Holley-Moore and
Watson 2014)
Few studies have focused on the direct experiences of individuals living with YOD.
Family perspective (Oyebode, Bradley & Allen 2013; Barca et al. 2014)
People living with YOD experience extreme social isolation (Harris 2004; Clemerson, Walsh and Isaac
2013)
People living with YOD need to engage in productive and meaningful activity (Johannessen
and Moller 2011; Pipon-Young et al. 2011)
Younger people with dementia are rarely represented in service evaluation and
development (Beattie et al. 2002; Davies-Quarrell et al. 2010)

Rationale
Three year study funded by the Booth Charities Distributors
Participatory Action Research (PAR) approach (Boote, Wong & Booth 2012)
Collaboration between Salford Institute for Dementia and Salford City Council
Development worker
Diverse & innovative sample – individuals living with YOD, their families/carers/friends
and staff working in services to support them

Study aims
To explore the experiences, needs and preferences of people who develop YOD and
their carers and families
To examine the views of service providers who plan and/or provide services for people
with YOD or their carers and family.
To develop best practice in Salford, in response to the research findings, with the
Humphrey Booth Resource Centre as a hub of excellence in a wider system of services
and support for younger people with dementia, their carers and families.

Stakeholder and Advisory groups

Indicative sampling frame (‘maximum diversity’
sample of stakeholders)
Number of
individual
‘voices’
Notes
People with YOD attending HBRC 6-8 Total sample of people with young
onset dementia and their
carers/networks: approx. 50
NB One person may represent more
than one characteristic e.g. be a HBRC
attender and live alone. Where
possible separate individuals will be
identified
A few small group or paired interviews
may be undertaken where indicated
People with YOD NOT using HBRC 6-8
Informal carers of people with YOD attending HBRC 6-8
Informal carers of people with YOD NOT using HBRC 6-8
People with YOD living alone 6-8
People with YOD living with carers 6-8
Informal carers living with people with YOD 6-8
Informal carers of people living alone with YOD 6-8
Potential future service users not yet diagnosed with
YOD/very newly diagnosed people with YOD
6-8 Subject to ethical considerations, to
be identified via clinicians
Formal carers/service staff of people living with YOD 25 To include combination of individual
and focus group interviews
Participants

Qualitative
methods
Triangulation
Interviews
Focus groups Participant
observations

Dissemination and Impact
Study findings/service developments shared nationally and internationally through Salford
Institute for Dementia and Salford City Council’s networks
Local dissemination – Salford very dementia activist – newsletters, meetings, socials,
support groups
Academic community – peer-reviewed journals and conferences
Education – embedding findings into curriculum, e.g. MSc Dementia: care and the
enabling environment
Practice community – nursing and occupational therapy conferences

References
BAMFORD, S., HOLLEY-MOORE, G. and WATSON, J. (eds.) (2014). New perspectives and approaches to understanding dementia and stigma. [online]. International Longevity
Centre UK.
http://www.ilcuk.org.uk/index.php/publications/publication_details/new_perspectives_and_approaches_to_understanding_dementia_and_stigma
BARCA, M., et al. (2014). Nobody asked me how I felt: experiences of adult children of persons with young-onset dementia. [online]. International psychogeriatrics, 26
(12), 1935 – 1944.
BEATTIE, A. M., et al. (2002) Younger people in dementia care: A review of service needs, service provision and models of good practice. [online]. Aging and mental health,
6 (3), 205 – 212.
BOOTE, J., WONG, R. and BOOTH, A. (2012). ‘Talking the talk or walking the walk?’ A bibliometric review of the literature on public involvement in health research
published between 1995 and 2009. [online]. Health expectations, 18, 44 – 57.
CLEMERSON, Gemma, WALSH, Sue and ISAAC, Claire (2013). Towards living well with young onset dementia: An exploration of coping from the perspective of those
diagnosed. [online]. Dementia, 0 (0), 1 – 16.
DAVIES-QUARRELL, Vivienne, et al. (2010). The ACE approach: promoting well-being and peer support for younger people with dementia. [online]. The journal of mental
health training, education and practice, 5 (3), 41 - 50.
HARRIS, Phyllis Braudy (2004). The perspective of younger people with dementia: Still an overlooked population. [online]. Social work in mental health, 2 (4), 17-36.
JOHANNESSEN, Aud and MÖLLER, Anders (2011). Experiences of persons with early-onset dementia in everyday life: A qualitative study. [online]. Dementia: The
international journal of social research and practice, 12 (4), 410-424.
OYEBODE, J.R., BRADLEY, P. and ALLEN, J.L. (2013). Relatives' experiences of fronto-variant frontotemporal dementia. Qualitative health research, 23 (2), 156 - 166.
PIPON-YOUNG, Fiona E., et al. (2011). I'm not all gone, I can still speak: The experiences of younger people with dementia: an action research study. [online]. Dementia:
The international journal of social research and practice, 11 (5), 597-616.
PRINCE, M., et al (2014). Dementia UK: Update. 2nd ed. [online.] The Alzheimer’s Society.
http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=2323
RABANAL, L. (2015). The impact of specialist day care for people with young onset dementia. Unpublished Master’s Thesis in Occupational Therapy, Sheffield Hallam
University.

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