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Psychosocial interventions for people with young onset dementia and their carers: a systematic review

Published online by Cambridge University Press:  13 April 2016

Angela Richardson ,
Gillian Pedley ,
Ferruccio Pelone ,
Farrukh Akhtar ,
Jacqueline Chang ,
Wilson Muleya  and
Nan Greenwood
Angela Richardson
Affiliation:
Faculty of Health, Social Care and Education, Kingston University and St George's, University of London, UK
Gillian Pedley
Affiliation:
Faculty of Health, Social Care and Education, Kingston University and St George's, University of London, UK
Ferruccio Pelone
Affiliation:
Faculty of Health, Social Care and Education, Kingston University and St George's, University of London, UK
Farrukh Akhtar
Affiliation:
Faculty of Health, Social Care and Education, Kingston University and St George's, University of London, UK
Jacqueline Chang
Affiliation:
Faculty of Health, Social Care and Education, Kingston University and St George's, University of London, UK
Wilson Muleya
Affiliation:
Faculty of Health, Social Care and Education, Kingston University and St George's, University of London, UK
Nan Greenwood*
Affiliation:
Faculty of Health, Social Care and Education, Kingston University and St George's, University of London, UK
*
Correspondence should be addressed to: Nan Greenwood, Faculty of Health, Social Care and Education, Kingston University and St George's, University of London, UK. Phone: +020 8725 4756. Email: [email protected].
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Abstract

Background:

Dementia in younger people, known as young (YOD) or early onset dementia (EOD), can pose significant challenges. YOD is often diagnosed in those in paid employment who have relatively young children, leading to different challenges to those for older people. It is therefore very important to provide support tailored to their specific needs. This systematic review aimed to synthesize the literature investigating the impact of psychosocial interventions for people with YOD and their family carers.

Method:

Eight electronic databases were searched and three key journals were also hand searched. Narrative synthesis of the selected articles was undertaken.

Results:

Of the 498 records identified, 495 were ineligible after application of the exclusion criteria. The final sample included three studies, all of which were employment-based. Two were qualitative and one used mixed methods. Study quality was mixed. People with YOD and their carers reported benefits from participating in work-based interventions designed for those with YOD, including improved self-esteem and sense of purpose. Social contact was highlighted. Despite cognitive decline, maintenance in well-being was also reported. Carers described benefits for people with YOD, which extended outside the intervention, e.g. enhanced sleep and mood. The impact of the interventions on carers was not assessed.

Conclusions:

This review suggests work-based interventions providing supported, meaningful work outside the home can be beneficial. However, the dearth of studies, the lack of focus on family carers and their mixed quality demonstrate the need for better quality, mixed methods research with larger sample sizes.

Keywords

young onsetearly onsetdementiapsychosocial interventionfamilycarer
Type
Review Article
Information
International Psychogeriatrics , Volume 28 , Issue 9 , September 2016 , pp. 1441 - 1454
Copyright
Copyright © International Psychogeriatric Association 2016 

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References

Allen, C. K., Austin, S. L., David, S. K., Eahart, C. A., McGrath, D. B. and Riska-Williams, L. (2007). Manual for Allen Cognitive Level Screen-5 (ACLS-5) and Large Allen Cognitive Level Screen (LACLS-5). Cmarillo, CA: ACLS and LACLS Committee.Google Scholar
Alzheimer's Association (2006). Early Onset Dementia: A National Challenge, a Future Crisis. Chicago, IL: Alzheimer's Association.Google Scholar
Alzheimer's Disease International (2009). World Alzheimer Report. Alzheimer's Disease International.Google Scholar
Alzheimer's Disease International (2013). Policy Brief for Heads of Government: The Global Impact of Dementia 2013–2050. London, UK: Alzheimer's Disease International.Google Scholar
Arai, A., Matsumoto, T., Ikeda, M. and Arai, Y. (2007). Do family caregivers perceive more difficulty when they look after patients with early onset dementia compared to those with late onset dementia?. International Journal of Geriatric Psychiatry, 22, 1255–61.Google Scholar
Armari, E., Jarmolowi, A. and Panegyres, P. K. (2012). The needs of patients with early onset dementia. American Journal of Alzheimer's Disease & Other Dementias, 28, 42–46.Google Scholar
Beattie, A., Daker-White, G., Gilliard, G. and Means, R. (2004). ‘How can they tell?’ a qualitative study of the views of younger people about their dementia and dementia care services. Health and Social Care in the Community, 12, 359–368.Google Scholar
Brodaty, H. and Arasaratnam, C. (2012). Meta-analysis of nonpharmacological interventions for neuropsychiatric symptoms of dementia. American Journal of Psychiatry, 169 946–953.Google Scholar
Bury, M. (1982). Chronic illness as biographical disruption. Sociology of Health & Illness, 4 167–82.Google Scholar
Cabote, C. J., Bramble, M. and McCann, D. (2015). Family caregivers’ experiences of caring for a relative with younger onset dementia: a qualitative systematic review. Journal of Family Nursing, 1–26.Google Scholar
Carers Trust (2015). http://www.carers.org/whats-a-carer; last accessed 11th August 2015.Google Scholar
Chaston, D. (2011). Between a rock and a hard place: exploring the service needs of younger people with dementia. Contemporary Nurse, 39, 130–139.Google Scholar
Clemerson, G., Walsh, S. and Isaac, C. (2013). Towards living well with young onset dementia: an exploration of coping from the perspective of those diagnosed. Dementia, 13, 451–466.Google Scholar
Davies, R., Doran, M. and Larner, A. J. (2011). Diagnosis and management of early-onset dementia. Progress in Neurology and Psychiatry 15 (4) 12–16.CrossRefGoogle Scholar
Department of Health (2009). Living well with dementia: a National Dementia Strategy. Available at: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/168220/dh_094051.pdf; last accessed 17/08/2015.Google Scholar
Dickens, A. P., Richards, S. H., Greaves, C. J. and Campbell, J. L. (2011). Interventions targeting social isolation in older people: a systematic review. BMC Public Health, 11, 647.Google Scholar
Dikersin, K. (1990). The existence of publication bias and risk factors for its occurrence. JAMA, 263, 1385–1389.Google Scholar
Ducharme, F., Kergoat, M. J., Antoine, P., Pasquier, F. and Coulombe, R. (2013). The unique experience of spouses in early-onset dementia. American Journal of Alzheimer's Disease & Other Dementias, 28 634–41.Google Scholar
Gibson, A. K., Anderson, K. A. and Acocks, S. (2014). Exploring the service and support needs of families with early-onset Alzheimer's disease. American Journal of Alzheimer's Disease & Other Dementias, 29, 596–600.Google Scholar
Goldberg, E. (2011). Filling an unmet need: a support group for early stage/young onset Alzheimer's disease and related dementias. Alzheimer's Association of West Virginia Medical Journal, 107, 64–68.Google Scholar
Greene, J. C., Caracelli, V. J. and Graham, W. F. (1989). Toward a conceptual framework for mixed-method evaluation designs. Educational Evaluation and Policy Analysis, 11, 255–274.Google Scholar
Greenwood, N., Habibi, R., Mackenzie, A., Drennan, V. and Easton, N. (2013). Peer support for carers: a qualitative investigation of the experiences of carers and peer volunteers. American Journal of Alzheimer's Disease & Other Dementias, 28, 617–626.Google Scholar
Greenwood, N. et al. (2015). Psychosocial interventions for people with early-onset dementia and their carers: a systematic review. PROSPERO 2015: CRD42015016056. Available at: http://www.crd.york.ac.uk/PROSPERO/display_record.asp?ID=CRD42015016056; last accessed 2 February 2016.Google Scholar
Hewitt, P., Watts, C., Hussey, J., Power, K. and Williams, , T. (2013). Does a structured gardening programme improve well-being in young-onset dementia. A preliminary study. British Journal of Occupational Therapy, 76, 355–36.Google Scholar
Hutchinson, K., Roberts, C., Kurrle, S. and Daly, M. (2014). The emotional well-being of younger people having a parent with younger dementia. Dementia, 0, 1–20.Google Scholar
Jefferies, K. and Agrawal, N. (2009). Early-onset dementia. Advances in Psychiatric Treatment, 15 380–388.Google Scholar
Johannessen, A. and Moller, A. (2011). Experiences of persons with early-onset dementia in everyday life: a qualitative study. Dementia, 12, 410–424.Google Scholar
Kinney, J. M., Carry, S. K. and Reddecliffe, L. (2011). ‘That's me, the Goother’: evaluation of a program for individuals with early-onset dementia. Dementia, 10, 361–377.CrossRefGoogle Scholar
Kmet, L. M., Lee, R. C. and Cook, L. S. (2004). Standard quality assessment criteria for evaluating primary research papers from a variety of fields. Alberta: Alberta Heritage Foundation for Medical Research.Google Scholar
Koopmans, R. and Rosness, T. (2014). Young onset dementia – what does the name imply?. International Psychogeriatrics, 26, 1931–1933.Google Scholar
Lockeridge, S. and Simpson, J. (2013). The experience of caring for a partner with young onset dementia: how younger carers cope. Dementia, 12, 635–651.Google Scholar
Mendez, M. F. (2006). The accurate diagnosis of early-onset dementia. International Journal of Psychiatry in Medicine, 36, pp. 401–412.Google Scholar
Moher, D., Liberati, A., Tetzlaff, J., Altman, D. G. and the PRISMA Group. PRISMA Group (2009). Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Annals of Internal Medicine, 151, 264–9, W64.Google Scholar
National Collaborating Centre for Mental Health (2007). NICE–SCIE Guideline on Supporting People with Dementia and their Carers in Health and Social Care. London: The British Psychological Society and Gaskell.Google Scholar
Panegyres, P. K. and Chen, H. (2013). Differences between early and late onset Alzheimer's disease. American Journal of Neurodegenerative Disease, 2, 300–306.Google Scholar
Pipon-Young, F. E., Lee, K. M., Jones, F. and Guss, R. (2011). I'm not all gone, I can still speak: the experiences of younger people with dementia. An action research study. Dementia, 11, 597–616.Google Scholar
Pool, J. (2011). The Pool Activity Level (PAL) Instrument for Occupational Profiling. A Practical Resource for Carers of People With Cognitive Impairment, 4th edn. London: Jessica Kingsley Publishers.Google Scholar
Pot, A. M. and Petrea, I. (2013). ‘Improving Dementia Care Worldwide: Ideas and Advice on Developing and Implementing a National Dementia Plan’. BUPA/ADI Report. London: Bupa/ADI.Google Scholar
Prince, M. et al. (2014). Dementia UK: Update, 2nd edn London: Alzheimer's Society.Google Scholar
Roach, P. and Drummond, N. (2014). ‘It's nice to have something to do.’ Early onset dementia and maintaining purposeful activity. Journal of Psychiatric and Mental Health Nursing, 21, 889–895.Google Scholar
Roach, P., Keady, J. and Bee, P. (2012). ‘It's easier just to separate them’ practice constructs in the mental health care and support of younger people with dementia and their families. Journal of Psychiatric and Mental Health Nursing, 19, 555–562.CrossRefGoogle ScholarPubMed
Robertson, J., Evans, D. and Horsnell, T. (2013). Side by side: a workplace engagement program for people with younger onset dementia. Dementia, 12, 666–674.Google Scholar
Rossor, M. N., Fox, N. C., Mummery, C. J., Schott, J. M. and Warren, , , J. D. (2010). The diagnosis of young-onset dementia. Lancet Neurology, 9, 793–806.Google Scholar
Rudman, N., Oyebode, J., Jones, C. and Bentham, P. (2011). An investigation into the validity of effort tests in a working age dementia population. Aging and Mental Health, 15, 47–57.Google Scholar
Sansoni, J., Duncan, C., Grootemaat, P., Samsa, P., Capell, J. and Westera, A. (2014). Younger onset dementia: a literature review . Australia: Centre for Health Service Development, University of Wollongong.Google Scholar
Van Mierlo, L. D., Meiland, F. J. M., Van Der Roest, H. G. and Dröes, R. (2012). Personalised caregiver support: effectiveness of psychosocial interventions in subgroups of caregivers of people with dementia. International Journal of Geriatric Psychiatry, 27, 1–14.Google Scholar
Veira, R. T., Caixeta, L., Machado, S., Silva, A. C. and Nardi, A. E. (2013). Epidemiology of early-onset dementia: a review of the literature. Clinical Practice and Epidemiology in Mental Health, 9, 88–9.Google Scholar
Vernooij-Dassena, M. and Moniz-Cook, E. (2014). Raising the standard of applied dementia care research: addressing the implementation error. Aging & Mental Health, 18, 809–814.Google Scholar
Williamson, T. (2012). A stronger collective voice for people with dementia. What's the issue? Joseph Rowntree Foundation. Available at: www.jrf.org.uk; last accessed 2 February 2016.Google Scholar
World Health Organization (2012). Dementia: A public health priority. World Health Organisation and Alzheimer's disease International.Google Scholar
Zimmerman, M. (2013). ‘Journeys’ in the life-writing of adult-child dementia caregivers. Journal of Medical Humanities, 34, 385–397.CrossRefGoogle Scholar