Hostname: page-component-8448b6f56d-qsmjn Total loading time: 0 Render date: 2024-04-25T04:56:45.989Z Has data issue: false hasContentIssue false
  • English
  • Français

Subjective experiences of younger people with dementia and their families: implications for UK research, policy and practice

Part of: Bespoke shallow archive Weizmann

Published online by Cambridge University Press:  01 May 2008

Pamela Roach ,
John Keady ,
Penny Bee  and
Kevin Hope
Pamela Roach*
Affiliation:
School of Nursing, Midwifery and Social Work, University of Manchester, UK
John Keady
Affiliation:
School of Nursing, Midwifery and Social Work, University of Manchester, UK
Penny Bee
Affiliation:
School of Nursing, Midwifery and Social Work, University of Manchester, UK
Kevin Hope
Affiliation:
School of Nursing, Midwifery and Social Work, University of Manchester, UK
*
Address for correspondence: P Roach, School of Nursing, Midwifery and Social Work, University of Manchester, University Place, Block 3, Oxford Road, Manchester, M13 9PL, UK.
Get access Rights & Permissions [Opens in a new window]

Extract

Young-onset dementia (dementia in people under 65 years of age) remains an under-researched area of dementia care. As populations age in industrialized countries, dementia is set to increase: this includes dementias in younger people. Current estimates suggest there are over 15 000 younger people living with dementia in the UK, whilst dedicated services and research in this area remain limited. Younger people may be affected by rarer forms of dementia that can create various kinds of impairment in the individual. For example, as Boxer and Miller report, although memory can be affected, people with conditions such as frontotemporal dementia can present initially with personality changes as the primary symptom. Younger people may also have more difficulties with visuospatial and semantic tasks when compared with an person, and there are likely to be personal and societal implications for the entire family.

Type
Neuropsychiatry of old age
Information
Reviews in Clinical Gerontology , Volume 18 , Issue 2 , May 2008 , pp. 165 - 174
Copyright
Copyright © Cambridge University Press 2009

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

1Alzheimer's Society, King's College London, London School of Economics. Dementia UK. The full report. London: Alzheimer's Society; 2007.Google Scholar
2Melbourne Neuropsychiatry Centre. Quality dementia care: understanding younger-onset dementia. Alzheimer's Australia; 2008.Google Scholar
3Boxer, AL, Miller, BL. Clinical features of frontotemporal dementia. Alzheimer's Dis Assoc Disord 2005; 19 (suppl 1): S3–S6.CrossRefGoogle ScholarPubMed
4Harris, PB, Keady, J. Living with early-onset dementia: exploring the experience and developing evidence-based guidelines for practice. Alzheimer's Care Q 2004; 5: 111–22.Google Scholar
5Department of Health. Everybody's business. Integrated mental health services for older adults: a service development guide. London: Department of Health; HMSO, 2005.Google Scholar
6Alzheimer's Australia. Exploring the needs of younger people with dementia in Australia. Alzheimer's Australia; 2007.Google Scholar
7Barker, W, Barrett, K, Bingley, W et al. Mental Health Services: heading for better care. Commissioning and providing mental health services for people with Huntington's disease, acquired brain injury and early-onset dementia. London: NHS Health Advisory Service; 1997.Google Scholar
8Department of Health. National Service Framework for Older People. London: Department of Health; HMSO, 2001.Google Scholar
9National Audit Office. Improving services and support for people with dementia. London: HMSO; 2007.Google Scholar
10Department of Health. Transforming the quality of dementia care: consultation on a National Dementia Strategy. London: Department of Health; HMSO, 2008.Google Scholar
11National Institute for Health and Clinical Excellence, Social Care Institute for Excellence. NICE Clinical Guideline 42. Dementia: supporting people with dementia and their carers in health and social care. London: NICE; 2006.Google Scholar
12Crowe, S. Alcohol-related brain impairment. In: Cox, S, Keady, J eds. Younger people with dementia: planning, practice and development. London: Jessica Kingsley Publishers; 1999: 135–50.Google Scholar
13Popay, J, Roberts, HSA, Petticrew, M, Arai, L, Rogers, M, Britten, N. Guidance on the conduct of narrative synthesis in systematic reviews. 2005.Google Scholar
14Dixon-Woods, M, Bonas, S, Booth, A et al. How can systematic reviews incorporate qualitative research? A critical perspective. Qual Res 2005; 6: 27–44.CrossRefGoogle Scholar
15Campbell, R, Pound, P, Pope, C et al. Evaluating meta-ethnography: a synthesis of qualitative research on lay experiences of diabetes and diabetes care. Soc Sci Med 2003; 56: 671–74.CrossRefGoogle ScholarPubMed
16Dixon-Woods, M, Fitzpatrick, R. Qualitative research in systematic reviews. BMJ 2001; 323: 765–66.CrossRefGoogle ScholarPubMed
17McKillop, J. Turning the corner when someone's there to help. J Dementia Care 2005; 13: 17–18.Google Scholar
18Bryden, C. Dancing with dementia: my story of living positively with dementia. London: Jessica Kingsley Publishers; 2005.Google Scholar
19Taylor, R.Alzheimer's from the inside out. Baltimore: Health Professions Press, Inc.; 2007.Google Scholar
20Alzheimer's Society. Coping with Pick's disease. Share: National newsletter of the Alzheimer's Society, February, 4–5. 2007. London, Alzheimer's Society. (Magazine Article).Google Scholar
21Davis, R.My journey into Alzheimer's Disease. Carol Stream: Tyndale House; 1989.Google Scholar
22Friedell, M. Awareness: a personal memoir on the declining quality of life in Alzheimer's. Dementia 2002; 1: 359–66.CrossRefGoogle Scholar
23Sterin, G. Essay on a word: a lived experience of Alzheimer's disease. Dementia 2002; 1: 7–10.CrossRefGoogle Scholar
24Dartington, T. Two days in December. Dementia 2007; 6: 327–41.CrossRefGoogle Scholar
25Casey, J. Early-onset dementia: Getting out and about. J Dementia Care 2004; 12: 12–13.Google Scholar
26Chaston, D, Pollard, N, Jubb, D. Young-onset dementia: a case for real empowerment. J Dementia Care 2004; 12: 24–6.Google Scholar
27La Fontaine, J. Providing person-centred care for younger people with dementia. J Dementia Care 2004; 12: 18–20.Google Scholar
28Tindall, L, Manthorpe, J. Early-onset dementia: a case of ill-timing? J Mental Health 1997; 6: 237–49.Google Scholar
29Beattie, AM, Daker-White, G, Gilliard, J, Means, R. Younger people in dementia care: a review of service needs, service provision and models of good practice. Aging Ment Health 2002 Aug; 6: 205–12.CrossRefGoogle Scholar
30Keady, J, Nolan, M. Younger-onset dementia: developing a longitudinal model as the basis for a research agenda and as a guide to interventions with sufferers and carers. J Adv Nurs 1994; 19: 659–69.CrossRefGoogle ScholarPubMed
31Williams, T, Dearden, A, Cameron, I. From pillar to post – a study of younger people with dementia. Psychiatr Bull 2001; 25: 384–87.CrossRefGoogle Scholar
32Ohman, A, Nygard, L, Borell, L. The vocational situation in cases of memory deficits or younger-onset dementia. Scand J Caring Sci 2001; 15: 43.CrossRefGoogle Scholar
33Beattie, A, Daker-White, G, Gilliard, J, Means, R. ‘How can they tell?’ A qualitative study of the views of younger people about their dementia and dementia care services. Health Soc Care Community 2004; 12: 359–68.CrossRefGoogle Scholar
34Robinson, P, Ekman, S, Meleis, AI, Winblad, B, Wahlund, L. Suffering in silence: the experience of early memory loss. Health Care Later Life 1997; 2: 107–20.Google Scholar
35Robinson, P. Younger persons with suspected and early-stage dementia: their experiences, concerns and need for support. Stockholm: Karolinska Institutet; 2000.Google Scholar
36Harris, PB. The perspective of younger people with dementia: still an overlooked Population. Soc Work Ment Health 2004; 2: 17–36.CrossRefGoogle Scholar
37Davies, HD, Clovis, CL, Ingram, L, Priddy, JM, Tinklenberg, JR. Stages of resolution: young adult children coping young with an Alzheimer's-disease parent. Clin Gerontol 2000; 22: 43–58.CrossRefGoogle Scholar
38Williams, O, Keady, J, Nolan, M. Younger-onset Alzheimer's disease: learning from the experience of one spouse-carer. J Clin Nurs 1995; 4: 31–6.CrossRefGoogle ScholarPubMed
39Pollen, A. Dates never to be forgotten as early Alzheimer's developed. J Dementia Care 2004; 12: 22–24.Google Scholar
40McErlean, S. Younger people with dementia and their spouses – a qualitative study. J Dementia Care 2002; 10: 38.Google Scholar
41Armstrong, M. The needs of people with young-onset dementia and their carers. Prof Nurse 2003; 18: 681–84.Google ScholarPubMed
42Heinrichs, D. What a dementing illness is doing to my family. In: Heston, LL ed. Progress in Alzheimer's disease and similar conditions. Washington, DC: American Psychiatric Press; 1997: 129–36.Google Scholar
43Alzheimer's Association. Early-onset dementia: a national challenge, a future crisis. Alzheimer's Association; 2006.Google Scholar
44Snyder, L. The lived experience of Alzheimer's – understanding the feelings and subjective accounts of persons with the disease. Alzheimer's Care Q 2001; 2: 8–22.Google Scholar
45de Boer, M, Hertogh, C, Droes, R, Riphagen, I, Jonker, C, Eefsting, J. Suffering from dementia –the patient's perspective: a review of the literature. Int Psychogeriatr 2007; 19: 1021–39.CrossRefGoogle ScholarPubMed
46Cox, S, Keady, J. Changing the mind-set: developing an agenda for change. In: Cox, S, Keady, J eds. Younger people with dementia: planning, practice and development. London: Jessica Kingsley Publishers; 1999: 292–304.Google Scholar
47Keady, J, Matthew, L. Younger people with dementia. Elderly Care 1997; 9: 19–23.Google ScholarPubMed