A qualitative investigation into family carers’ experiences of living with/caring for a person with young-onset dementia
Search for other papers by Cathal Blake in
Current site
Google Scholar
Search for other papers by Louise Hopper in
Current site
Google Scholar
Ageing is a significant risk factor for developing dementia; however, some people develop symptoms before the age of 65. Although less common, it is referred to as young-onset dementia. Estimating prevalence rates in Ireland is difficult, as there has been little study around what it is like to live with/care for this cohort; consequently, it is poorly understood. Nine primary carers were interviewed using semi-structured one-to-one interviews. Interview data were analysed with inductive thematic analysis. Themes included sense of loss, diagnostic issues, appropriateness of services, stigma and carer strain, illustrating the complex nature of caring for someone with young-onset dementia.
-
Adelman, R.D., Tmanova, L.L., Delgado, D., Dion, S. and Lachs, M.S. (2014) Carer strain: a clinical review, Journal of the American Medical Association, 311(10): 1052–60. doi: 10.1001/jama.2014.304
-
Allen, J., Oyebode, J.R. and Allen, J. (2009) Having a father with young onset dementia. The impact on well-being of young people, Dementia, 8(4): 455–80. doi: 10.1177/1471301209349106
-
Arai, A., Matsumoto, T., Ikeda, A. 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(12): 1255–61. doi: 10.1002/gps.1935
-
Armari, E., Jarmolowicz, A. and Panegyres, P.K. (2013) The needs of patients with early onset dementia, American Journal of Alzheimer’s Disease and Other Dementias, 28(1): 42–6.
-
Bakker, C., de Vugt, M.E., van Vliet, D., Verhey, F.R.J., Pijnenburg, Y.A., Vernooij-Dassen, M. and Raymond Koopmans, R.T.C.M. (2013) Predictors of the time to institutionalization in young- versus late-onset dementia: results from the Needs in Young Onset Dementia (NeedYD) study, Journal of the American Medical Directors Association, 14(4): 248–53. doi: 10.1016/j.jamda.2012.09.011
-
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(4): 359–68. doi: 10.1111/j.1365-2524.2004.00505.x
-
Bunn, F. et al. (2012) Psychosocial factors that shape patient and carer experiences of dementia diagnosis and treatment: a systematic review of qualitative studies, PLoS Medicine, 9(10): 1–12. doi: 10.1371/journal.pmed.1001331
-
Cahill, S., O’Shea, E. and Pierce, M. (2012) Creating Excellence in Dementia Care: A Research Review for Ireland’s National Dementia Strategy, Dublin: School of Social Work and Social Policy, Trinity College Dublin.
-
Cations, M. et al. (2017) Why aren’t people with young onset dementia and their supporters using formal services? Results from the INSPIRED study, PLoS One, 12(7): 1–15. doi: 10.1371/journal.pone.0180935
-
Chemali, Z., Schamber, S., Tarbi, E., Acar, D. and Avila-Urizar, M. (2011) Diagnosing early onset dementia and then what? A frustrating system of aftercare resources, International Journal of General Medicine, 5: 81–6.
-
De Vugt, M.E. and Verhey, F.R. (2013) The impact of early dementia diagnosis and intervention on informal carers, Progress in Neurobiology, 110: 54–62. doi: 10.1016/j.pneurobio.2013.04.005
-
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 and Other Dementias, 28(6): 634–41.
-
Elo, S. and Kyngas, H. (2008) The qualitative content analysis process, Journal of Advanced Nursing, 62(1): 107–15. doi: 10.1111/j.1365-2648.2007.04569.x
-
Flynn, R. and Mulcahy, H. (2013) Early-onset dementia: the impact on family care-givers, British Journal of Community Nursing, 18(12): 598–606. doi: 10.12968/bjcn.2013.18.12.598
-
Freyne, A., Kidd, N., Coen, R. and Lawlor, A.B. (1999) Strain in carers of dementia patients: higher levels in carers of young sufferers, International Journal of Geriatric Psychiatry, 14(9): 784–8. doi: 10.1002/(SICI)1099-1166(199909)14:9<784::AID-GPS16>3.0.CO;2-2
-
Gelman, C.R. and Greer, C. (2011) Young children in early-onset Alzheimer’s disease families: research gaps and emerging service needs, American Journal of Alzheimer’s Disease and Other Dementias, 26(1): 29–35.
-
Harris, P.B. and Keady, J. (2009) Selfhood in younger onset dementia: transitions and testimonies, Aging and Mental Health, 13(3): 437–44. doi: 10.1080/13607860802534609
-
Hayward, P. and Bright, J.A. (1997) Stigma and mental illness: a review and critique, Journal of Mental Health, 6(4): 345–54. doi: 10.1080/09638239718671
-
HSE (Health Service Executive) (2016) Facts and figures: dementia understand together, www.hse.ie/eng/services/list/4/olderpeople/dementia/about-dementia/dementia-stats/.
-
Hsieh, H.F. and Shannon, S.E. (2005) Three approaches to qualitative content analysis, Qualitative Health Research, 15(9): 1277–88, www.ageaction.ie/how-we-can-help/information/questions-about-nursing-homes/fair-deal-nursing-home-support-scheme. doi: 10.1177/1049732305276687
-
Huber, M., Knottnerus, J.A., Green, L., van der Horst, H., Jadad, A.R., Kromhout, D., Leonard, B., Lorig, K., Loureiro, M. I., van der Meer, J.W., Schnabel, P., Smith, R., van Weel, C. and Smid, H. (2011) How should we define health?, BMJ (Clinical research ed), 343, d4163. doi: 10.1136/bmj.d4163
-
Hudson, P. and Payne, S. (2009) Family Carers in Palliative Care: A Guide for Health and Social Care Professionals, Oxford: Oxford University Press.
-
Jorm, A.F. (2001) History of depression as a risk factor for dementia: an updated review, Australian & New Zealand Journal of Psychiatry, 35(6): 776–81.
-
Koopmans, R.T. and Thompson, D. (2013) Services for people with young onset dementia, in H. de Waal, C. Lyketsos, D. Ames and J. O’Brien (eds) Designing and Delivering Dementia Services, Chichester: John Wiley & Sons, Ltd, pp 33–45.
-
Liebson, E., Rauch, P., Graff, S. and Folstein, M. (2005) Early-onset dementia: diagnostic considerations and implications for families, Harvard Review of Psychiatry, 13(2): 102–11. doi: 10.1080/10673220590956492
-
Millenaar, J.K., Bakker, C., van Vliet, D., Koopmans, R.T., Kurz, A., Verhey, F.R. and de Vugt, M.E. (2016) Exploring perspectives of young onset dementia caregivers with high versus low unmet needs, International Journal of Geriatric Psychiatry, 33(2): 340–7. doi: 10.1002/gps.4749
-
Morgan, D.G., Semchuk, K.M., Stewart, N.J. and D’Arcy, C. (2002) Rural families caring for a relative with dementia: barriers to the use of formal services, Social Science Medical, 55(7): 1129–42. doi: 10.1016/S0277-9536(01)00255-6
-
Morhardt, D. (2012) Accessing community-based and long-term care services: challenges facing persons with frontotemporal dementia and their families, Journal of Molecular Neuroscience, 45(3): 737–41. doi: 10.1007/s12031-011-9612-5
-
Nichols, K.R., Fam, D., Cook, C., Pearce, M., Elliot, G., Baago, S., Rockwood, K. and Chow, T.W. (2013) When dementia is in the house: needs assessment survey for young caregivers, Canadian Journal of Neurological Sciences, 40(1): 21–8. doi: 10.1017/S0317167100012907
-
O’Shea, E. (2007) Implementing Policy for Dementia Care in Ireland: the Time for Action is Now, http://www.dementianetwork.ie/sites/default/files/publications/implementing_policy_for_dementia_care_in_ireland.pdf.
-
Roach, P., Keady, J., Bee, P. and Hope, K. (2008) Subjective experiences of younger people with dementia and their families: implications for UK research, policy and practice, Review of Clinical Gerontology, 18(2): 165–74. doi: 10.1017/S0959259809002779
-
Roach, P., Drummond, N. and Keady, J. (2016) Nobody would say that it is Alzheimer’s or dementia at this age: family adjustment following a diagnosis of early-onset dementia, Journal of Aging Studies, 36: 26–32. doi: 10.1016/j.jaging.2015.12.001
-
Scambler, G. (2009) Health-related stigma, Sociology of Health & Illness, 31(3): 441–55. doi: 10.1111/j.1467-9566.2009.01161.x
-
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(1): 47–50. doi: 10.1002/gps.930090110
-
Svanberg, E., Stott, J. and Spector, A. (2010) ‘Just helping’: children living with a parent with young onset dementia, Ageing & Mental Health, 14(6): 741–50.
-
Teng, E., Tassniyom, K. and Lu, P.H. (2012) Reduced quality-of-life ratings in mild cognitive impairment: analyses of subject and informant responses, The American Journal of Geriatric Psychiatry, 20(12): 1016–25. doi: 10.1097/JGP.0b013e31826ce640
-
Van Vliet, D., de Vugt, M.E., Bakker, C., Koopmans, R.T. and Verhey, F.R. (2010) Impact of early onset dementia on carers: a review, International Journal of Geriatric Psychiatry, 25(11): 1091–100. doi: 10.1002/gps.2439
-
Van Vliet, D., de Vugt, M.E., Bakker, C., Koopmans, R.T., Pijnenburg, Y.A., Vernooij-Dassen, M.J. and Verhey, F.R. (2011) Carers’ perspectives on the pre-diagnostic period in early onset dementia: a long and winding road, International Psychogeriatrics, 23(9): 1393–404. doi: 10.1017/S1041610211001013
-
Verhey, F.R.J., De Vugt, M.E., Aalten, P., Vernooij-Dassen, M.J., Byrne, E.J. and Robert, P. (2007) Caregiver outcomes in disease modifying trials, Journal of Nutrition Health and Aging, 11(4): 342–4.
-
Weder, N.D., Aziz, R., Wilkins, K. and Tampi, R.R. (2007) Frontotemporal dementias: a review, Annals of General Psychiatry, 6(1): 1–10. doi: 10.1186/1744-859X-6-1
-
Werner, P., Stein-Shvachman, I. and Korczyn, A.D. (2009) Early onset dementia: clinical and social aspects, International Psychogeriatrics, 21(4): 631–6. doi: 10.1017/S1041610209009223
-
Williams, T., Dearden, A.M. and Cameron, I.H. (2001) From pillar to post: a study of younger people with dementia, Psychiatric Bulletin, 25(10): 384–387.
Search for other papers by Cathal Blake in
Current site
Google Scholar
Search for other papers by Louise Hopper in
Current site
Google Scholar
| May 2022 onwards | Past Year | Past 30 Days | |
|---|---|---|---|
| Abstract Views | 1338 | 387 | 14 |
| Full Text Views | 46 | 5 | 1 |
| PDF Downloads | 32 | 6 | 1 |
Institutional librarians can find more information about free trials here
We are a leading social science publisher
committed to making a difference.
Bristol University Press and
Policy Press
bristoluniversitypress.co.uk