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

¾ Young onset dementia (YOD) - introduction and psychosocial impact ¾ Services for people living with YOD ¾ Phenomenological research in YOD ¾ Study aims and participatory action research approach ¾ Participants and methods

¾ 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

Resp

onsi

bilit

ies

Num

ber

of r

oles

and

occ

upat

ions

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 Unpublished Master’s thesis in Occupational Therapy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?

¾ YOD specialist services remain scarce and patchy across the UK

¾ Non-statutory/voluntary agency run support groups

¾ Younger people with dementia are often excluded from working-age mental health services

¾ Specialist residential/24 hour care is even more limited

¾ 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

¾ 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)

¾ Few studies have focused on the direct experiences of individuals living with YOD. Family perspective (Oyebode, Bradley & Allen 2013; Barca et al. 2014)

¾ People living with YOD experience extreme social isolation (Harris 2004; Clemerson, Walsh and Isaac 2013)

¾ People living with YOD need to engage in productive and meaningful activity (Johannessen and Moller 2011; Pipon-Young et al. 2011)

¾ Younger people with dementia are rarely represented in service evaluation and development (Beattie et al. 2002; Davies-Quarrell et al. 2010)


Rationale

¾ Three year study funded by the Booth Charities Distributors ¾ Participatory Action Research (PAR) approach (Boote, Wong & Booth 2012)

¾ Collaboration between Salford Institute for Dementia and Salford City Council ¾ Development worker ¾ Diverse & innovative sample – individuals living with YOD, their families/carers/friends

and staff working in services to support them


Study aims

¾ To explore the experiences, needs and preferences of people who develop YOD and their carers and families

¾ To examine the views of service providers who plan and/or provide services for people with YOD or their carers and family.

¾ 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

¾ Study findings/service developments shared nationally and internationally through Salford Institute for Dementia and Salford City Council’s networks

¾ Local dissemination – Salford very dementia activist – newsletters, meetings, socials, support groups

¾ Academic community – peer-reviewed journals and conferences

¾ Education – embedding findings into curriculum, e.g. MSc Dementia: care and the

enabling environment

¾ 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.

http://www.ilcuk.org.uk/index.php/publications/publication_details/new_perspectives_and_approaches_to_understanding_dementia_and_stigma












http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=2323













louisa rabanal,

Healthcare