The impact of young onset dementia on the family: A literature review

International Psychogeriatrics

Volumn 23, Issue 3, 2011, Pages 356-371

  Svanberg, Emma ^a   Spector, Aimee ^b   Stott, Joshua ^b  

^a Primary Care Psychology and Counselling Service   (United Kingdom)

^b UNIVERSITY COLLEGE LONDON   (United Kingdom)

Author keywords

carer; children; early onset; presenile

Indexed keywords

DEMENTIA; EXPERIENCE; FAMILY; HUMAN; ONSET AGE; OUTCOME ASSESSMENT; POPULATION RESEARCH; PRESENILE DEMENTIA; REVIEW; SYSTEMATIC REVIEW; UNITED KINGDOM; AGE; AGED; CAREGIVER; COST OF ILLNESS; FEMALE; MALE; MIDDLE AGED; PSYCHOLOGICAL ASPECT; SEX DIFFERENCE;

AGE FACTORS; AGE OF ONSET; AGED; CAREGIVERS; COST OF ILLNESS; DEMENTIA; FEMALE; GREAT BRITAIN; HUMANS; MALE; MIDDLE AGED; SEX FACTORS;

EID: 79960587497     PISSN: 10416102     EISSN: 1741203X     Source Type: Journal    
DOI: 10.1017/S1041610210001353     Document Type: Review

References (53)

1. Alzheimer's Association (2006). Early Onset Dementia: A National Challenge, a Future Crisis. Washington, DC: Alzheimer's Association.
2. Alzheimer's Australia (2007). Exploring the Needs of Younger People with Dementia in Australia: Report to the Australian Government. Canberra: Department of Health and Ageing.
3. Alzheimer's Society (2007). Dementia UK: Summary of Key Findings. London: Alzheimer's Society. Available at http://www. alzheimers. org. uk/site/scripts/download-info. php?fileID=2; last accessed 23 March 2010.
4. Alzheimer's Society (2008a). Factsheet 440: Younger People with Dementia (updated: June 2009). Available at http://www. alzheimers. org. uk/factsheet/440; last accessed 23 March 2010.
5. Alzheimer's Society (2008b). Dementia: Out of the Shadows. London: Alzheimer's Society. Available at http://www. alzheimers. org. uk/site/scripts/download-info. php?down loadID=133&fileID=454; last accessed 23 March 2010.
6. Arai, A., Matsumoto, T., Ikeda, M. and Arai, Y. (2007). Do family carers 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, 1255-1261.
7. Armstrong, M. (2003). The needs of people with youngonset dementia and their carers. Nursing Times, 18, 681-684.
8. Baldwin, R. C. (1994). Acquired cognitive impairment in the presenium. Psychiatric Bulletin, 18, 463-465.
9. Beattie, A., Daker-White, G., Gilliard, J. 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.
10. Boutoleau-Bretonnìere, C., Vercelletto, M., Volteau, C., Renou, P. and Lamy, E. (2008). Zarit Burden Inventory and Activities of Daily Living in the behavioural variant of frontotemporal dementia. Dementia and Geriatric Cognitive Disorder, 25, 272-277.
11. Burns, R., Nichols, L. O., Martindale-Adams, J., Graney, M. J. and Lummus, A. (2003). Primary care interventions for dementia caregivers: 2-year outcomes from the REACH study. Gerontologist, 43, 547-555.
12. Centre for Reviews and Dissemination (2008). Systematic Reviews: CRD's Guidance for Undertaking Reviews in Health Care. Centre for Reviews and Dissemination: York.
13. Connell, C. M., Janevic, M. R., Gallant, M. P. (2001). The costs of caring: impact of dementia on family carers. Journal of Geriatric Psychiatry and Neurology, 14, 179-187.
14. Dartington, T. (2007). Two days in December. Dementia, 6, 327-341.
15. de Boer, M. E., Hertogh, C. M. P. M., Dr̈ oes, R-M., Riphagen, I. I., Jonker, C. and Eefsting, J. A. (2007). Suffering from dementia-the patient's perspective: a review of the literature. International Psychogeriatrics, 19, 1021-1039
16. Delany, N. and Rosenvinge, H. (1995). Presenile dementia: sufferers, carers and services. International Journal of Geriatric Psychiatry, 10, 597-601.
17. Department of Health (2001). National Service Framework for Older People. London: Department of Health. Available at http://www. dh. gov. uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/ DH-4003066; last accessed 23 March 2010.
18. Department of Health (2009). Living Well with Dementia: A National Dementia Strategy. London: Department of Health. Available at http://www. dh. gov. uk/en/Publicationsandstatistics/Publications/Publications PolicyAndGuidance/DH-094058; last accessed 23 March 2010.
19. de Vugt, M. E., Riedijk, S. R., Aalten, P., Tibben, A., van Swieten, J. C. and Verhey, F. R. J. (2006). Impact of behavioural problems on spousal carers: a comparison between Alzheimer's disease and frontotemporal dementia. Dementia and Geriatric Cognitive Disorders, 22, 35-41.
20. Elliott, R., Fischer, C. T. and Rennie, D. L. (1999). Evolving guidelines for publication of qualitative research studies in psychology and related fields. British Journal of Clinical Psychology, 38, 215-229.
21. Freyne, A., Kidd, N., Coen, R. and Lawlor, B. A. (1999). Burden in carers of dementia patients: higher levels in carers of younger sufferers. International Journal of Geriatric Psychiatry, 14, 784-788.
22. Garbutt, N. J. (2006) The experience of having a parent with young-onset dementia during transition to adulthood. Unpublished doctoral thesis, Clinical Psychiatry, University of Leeds.
23. Gilliard, J. (1999). Young carers: individual circumstances and practice consideration in dementia caring. In S. Cox and J. Keady (eds.), Younger People with Dementia: Planning, Practice and Development (pp. 196-202). London: Jessica Kingsley Publishers.
24. Goldberg, D. (1978). Manual of the General Health Questionnaire. Windsor: NFER-Nelson.)
25. Harvey, R. J. (1998). Young Onset Dementia: Epidemiology, Clinical Symptoms, Family Burden, Support and Outcome. London: Dementia Research Group/NHS Executive (North Thames).
26. Roques, P. K., Fox, N. C., Rossor, M. N. (1998). CANDID-Counselling and Diagnosis in Dementia: a national telemedicine service supporting the care of younger patients with dementia. International Journal of Geriatric Psychiatry, 13, 381-388.
27. Husband, H. J. and Shah, M. N. (1999). Information and advice received by carers of younger people with dementia. Psychiatric Bulletin, 23, 94-96.
28. Iliffe, S., Wilcock, J. and Haworth, D. (2006). Obstacles to shared care for patients with dementia: a qualitative study. Family Practice, 23, 353-362
29. Ikejima, C. M. S, Yasuno, F., Mizukami, K., Sasaki, M., Tanimukai, S. and Asada, T. (2009). Prevalence and causes of early-onset dementia in Japan: a population-based study. Stroke, 40, 2709-2714
30. Kaiser, S. and Panegyres, P. K. (2007). The psychosocial impact of young onset dementia on spouses. American Journal of Alzheimer's Disease and Other Dementias, 21, 398-402.
31. Keady, J. and Nolan, M. (1999). Family caring and younger people with dementia: dynamics, experiences and service expectations. In S. Cox and J. Keady (eds.), Younger People with Dementia: Planning, Practice and Development (pp. 203-222). London: Jessica Kingsley Publishers.
32. Killick, J. (1999). "Dark head amongst the grey": experiencing the worlds of younger persons with dementia. In S. Cox and J. Keady (eds.), Younger People with Dementia: Planning, Practice and Development (pp. 153-172). London: Jessica Kingsley Publishers.
33. Liebson, E., Rauch, P., Graff, S. and Folstein, M. (2005) Early-onset dementia: diagnostic considerations and implications for families. Harvard Review of Psychiatry, 13, 102-111.
34. Luscombe, G., Brodaty, H. and Freeth, S. (1998). Younger people with dementia: diagnostic issues, effects on carers and use of services. International Journal of Geriatric Psychiatry, 13, 323-330.
35. Mackay, N. and Marriott, A. (2000). Young onset dementia: carer's experiences of services. PSIGE Newsletter, 72, 3-5.
36. McMurtray, A., Clark, D. G., Christine, D. and Mendez, M. F. (2006). Early-onset dementia: frequency and causes compared to late-onset dementia. Dementia and Geriatric Cognitive Disorders, 21, 59-64.
37. Mendez, M. F. (2006). The accurate diagnosis of early-onset dementia. International Journal of Psychiatry in Medicine, 36, 401-412.
38. Mourik, J. C., Rosso, S. M., Niermeijer, M. F., Duivenvoorden, H. J., van Swieten, J. C. and Tibben, A. (2004). Frontotemporal dementia: behavioural symptoms and carer distress. Dementia and Geriatric Cognitive Disorders, 18, 299-306.
39. Nandi, S. P., Biswas, A., Pal, S., Basu, S., Senapati, A. K. and Das, S. K. (2008). Clinical profile of young-onset dementia: a study from Eastern India. Neurology Asia, 13, 103-108.
40. Newens, A. J., Forster, D. P. and Kay, D. W. K. (1995). Dependency and community care in presenile Alzheimer's Disease. British Journal of Psychiatry, 166, 777-782.
41. Nurock, S. (2000). Carers and young onset dementia. Journal of the British Society of Gerontology (Generations Review), 10, 7-9.
42. Petticrew, M. and Gilbody, S. (2004). Planning and conducting systematic reviews. In S. Michie and A. Abraham (eds), Health Psychology in Practice. Oxford: Blackwell.
43. Riedijk, S. R. et al. (2006). Carer burden, health-related quality of life and coping in dementia carers: a comparison of frontotemporal dementia and Alzheimer's disease. Dementia and Geriatric Cognitive Disorders, 22, 405-412.
44. Roach, P. and Keady, J. (2008). Younger people with dementia: time for fair play. British Journal of Nursing, 17, 690.
45. Sampson, E. L., Warren, J. D. and Rossor, M. N. (2004). Young onset dementia. Postgraduate Medical Journal, 80, 125-139.
46. Schulz, R., O'Brien, A. T., Bookwala, J. and Fleissner, K. (1995). Psychiatric and physical morbidity effects of dementia caring: prevalence, correlates, and causes. Gerontologist, 35, 771-791.
47. Seddon, D. (1999). Negotiating caring and employment. In S. Cox and J. Keady (eds.), Younger People with Dementia: Planning, Practice and Development (pp. 173-195), London: Jessica Kingsley Publishers
48. Sperlinger, D. and Furst, M. (1994). The service experiences of people with presenile dementia: a study of carers in one London borough. International Journal of Geriatric Psychiatry, 9, 47-50
49. Steeman, E., Dierckx de Casterĺe, B., Godderis, J. and Grypdonck, M. (2006). Living with early-stage dementia: a review of qualitative studies. Journal of Advanced Nursing, 54, 722-738.
50. Tindall, L. and Manthorpe, J. (1997). Early onset dementia: a case of ill-timing? Journal of Mental Health, 6, 237-249.
51. Torti, F. M., Gwyther, L. P., Reed, S. D., Friedman, J. Y. and Schulman, K. A. (2004). A multinational review of recent trends and reports in dementia caregiver burden. Alzheimer Disease and Associated Disorders, 18, 99-109.
52. Williams, T., Dearden, A. M. and Cameron, I. H. (2001). From pillar to post: a study of younger people with dementia. Psychiatric Bulletin, 25, 384-387.
53. Zarit, S. H., Orr, N. K. and Zarit, J. M. (1985). The Hidden Victims of Alzheimer's Disease: Families under Stress. New York: New York University Press.