AAD> Vol.3 No.1, March 2014

Caring for Individuals with Early-Onset Dementia and Their Family Caregivers: The Perspective of Health Care Professionals

DownloadDownload as PDF (Size:271KB)  HTML    PP. 33-43  

ABSTRACT

The phenomenon of early-onset dementia remains an under-researched subject from the perspective of health care professionals. The aim of this qualitative study was to document the experiences and service needs of patients and their family caregivers for optimal clinical management of early-onset dementia from the perspective of health care professionals. A sample of 13 health care professionals from various disciplines, who worked with individuals who suffered from Alzheimer’s disease or related disorders and their family caregivers, took part in focus groups or semi-structured individual interviews, based on a life course perspective. Three recurrent themes emerged from the data collected from health care professionals and are related to: 1) identification with the difficult experiences of caregivers and powerlessness in view of the lack of services; 2) gaps in the care and services offered, including the lack of clinical tools to ensure that patients under age 65 were diagnosed and received follow-up care, and 3) solutions for care and services that were tailored to the needs of the caregiver-patient dyads and health care professionals, the most important being that the residual abilities of younger patients be taken into account, that flexible forms of respite be offered to family caregivers and that training be provided to health care professionals. The results of this study provided some innovative guidelines for optimal clinical management of early-onset dementia in terms of the caregiver-patient dyad.

Cite this paper

Ducharme, F. , Kergoat, M. , Antoine, P. , Pasquier, F. and Coulombe, R. (2014) Caring for Individuals with Early-Onset Dementia and Their Family Caregivers: The Perspective of Health Care Professionals. Advances in Alzheimer's Disease, 3, 33-43. doi: 10.4236/aad.2014.31005.

References

[1] Alzheimer’s Association (2013) Early Onset Dementia: A National Challenge, a Future Crisis. http://www.alz.org/national/documents/report_earlyonset_full.pdf
[2] Mendez, M. (2006) The Accurate Diagnosis of Early-Onset Dementia. International Journal of Psychiatric Medicine, 36, 401-412. http://dx.doi.org/10.2190/Q6J4-R143-P630-KW41
[3] Bakker, C., de Vugt, M., Vernooil-Dassen, M., van Vliet, D., Verhey, F. and Koopmans, R. (2010) Needs in Early onset Dementia: A Qualitative Case from the NeedYD Study. American Journal of Alzheimer’s Disease and Other Dementias, 25, 634-640. http://dx.doi.org/10.1177/1533317510385811
[4] Ducharme, F., Kergoat, M.-J., Antoine, P., Pasquier, F. and Coulombe, R. (2013) The Unique Experience of Spouse in Early-Onset Dementia. American Journal of Alzheimer’s Disease and Other Dementias, 28, 634-641. http://dx.doi.org/10.1177/1533317513494443
[5] Lockeridge, S. and Simpson, J. (2012) The Experience of Caring for a Partner with Young Onset Dementia: How Younger Carers Cope. Dementia, 12, 635-651. http://dx.doi.org/10.1177/1471301212440873
[6] 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 in Clinical Gerontology, 18, 165-174. http://dx.doi.org/10.1017/S0959259809002779
[7] Williams, T., Dearden, A. and Cameron, I. (2005) From Pillar to Post: A Study of Younger People with Dementia. Psychiatric Bulletin, 25, 384-387. http://dx.doi.org/10.1192/pb.25.10.384
[8] 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, 1255-1261. http://dx.doi.org/10.1002/gps.1935
[9] Freyne, A., Kidd, N., Coen, R, and Lawlor, B. (1999) Burden in Carers of Dementia Patients. Higher levels in carers of younger sufferers. International Journal of Geriatric Psychiatry, 14, 784-788. http://dx.doi.org/10.1002/(SICI)1099-1166(199909)14:9<784::AID-GPS16>3.0.CO;2-2
[10] Kaiser, S., and Panegyres, P. (2007) The Psychosocial Impact of Young Onset Dementia on Spouses. American Journal of Alzheimer’s Disease and Other Dementias, 21,398-402.
http://dx.doi.org/10.1177/1533317506293259
[11] Beattie, A., Daker-White, G., Gilliard, J. and Means, R. (2002) Younger People in Dementia Care: A Review of Service Needs, Service Provision and Models of Good Practice. Aging and Mental Health, 6, 205-212. http://dx.doi.org/10.1080/13607860220142396
[12] Chaston, D., Polland, N. and Jubb, D. (2004) Young Onset Dementia: A Case For Real Empowerment. Journal of Dementia Care, 12, 24-26.
[13] Coombes, E., Colligan, J. and Keenan, H. (2004) Evaluation of an Early Onset Dementia Service. Journal of Dementia Care, 12, 35.
[14] Denzin, N. and Lincoln, Y. (2003) Handbook of Qualitative Research. Sage, Toronto.
[15] Miles, M. and Huberman, A. (2003) Qualitative Data Analyses. Sage, Toronto.
[16] Rosenthal Gelman, C. and Greer, C. (2012) Young Children in Early-Onset Alzheimer’s Disease Families: Research Gaps and Emerging Services. American Journal of Alzheimer’s Disease and Other Dementias, 26, 29-35. http://dx.doi.org/10.1177/1533317510391241
[17] Bengtson, V. and Allen, K. (1993) The Life Course Perspective Applied to Families Over Time. In: Boss, P., Doherty, W., LaRossa, R., Schumm, W. and Tenmetz, S., Eds., Sourcebook of Family Theories and Methods, Plenum, New York, 469-504. http://dx.doi.org/10.1007/978-0-387-85764-0_19
[18] Whitchurch, G. and Constantine, L. (1993) Systems Theory. In: Boss, P., Doherty, W., LaRossa, R., Schumm, W. and Tenmetz, S. Eds., Sourcebook of Family Theories and Methods, Plenum, New York, 325-352. http://dx.doi.org/10.1007/978-0-387-85764-0_14
[19] Wilkinson, S. (2003) Focus Groups. In: Smith, J. Ed., Qualitative Psychology, Sage, Toronto, 184-204.
[20] Van Vliet D., de Vugt, M., Bakker, C., Koopmans, R. and Verhey, F. (2010) Impact of Early Onset Dementia on Caregivers: A Review. International Journal of Geriatric Psychiatry, 25, 1091-1100.
http://dx.doi.org/10.1002/gps.2439
[21] Phillips, J., Pond, C.D., Paterson, N.E., et al. (2012) Difficulties in Disclosing the Diagnosis of Dementia: A Qualitative Study in General Practice. British Journal of General Practice, 62, 546-555.
http://dx.doi.org/10.3399/bjgp12X653598
[22] Diekelman, N. (2001) Narrative Pedagogy: Heideggerian Hermeneutical Analyses of Lived Experiences of Students, Teachers and Clinicians. Advances in Nursing Science, 23, 53-71.
http://dx.doi.org/10.1097/00012272-200103000-00006
[23] Lévesque, L., Ducharme, F., Hanson, E., Magnusson, L., Nolan, J. and Nolan, J. (2010) A Qualitative Study of a Partnership Approach to Service Needs with Family Caregivers on an Aging Relative Living at Home: How and Why? International Journal of Nursing Studies, 47, 876-887.
http://dx.doi.org/10.1016/j.ijnurstu.2009.12.006
[24] Harris, P. and Keady, J. (2004) Living with Early Onset Dementia. Alzheimer’s Care Quarterly, 5, 111-122.
[25] Mishel, M. (1988) Uncertainty in Illness. Image, 20, 225-232. http://dx.doi.org/10.1111/j.1547-5069.1988.tb00082.x
[26] Lopez-Hartmann, M., Wens, J., Verhoeven, V. and Remmen, R. (2012) The Effect of Caregiver Support Interventions for Informal Caregivers of Community-Dwelling Frail Elderly: A Systematic Review. International Journal of Integrated Care, 12. Published on Line August 10, 2012. http://www.ijic.org
[27] Scotland’s National Dementia Strategy (2013) Five Pillars Model of Post-Diagnostic Support.
http://www.alzscot.org/campaigning/national_dementia_strategy
[28] Prorok, J., Horgan, S., and Seitz, D. (2013) Health Care Experiences of People with Dementia and Their Caregivers: A Meta-Ethnographic Analysis of Qualitative Studies. Canadian Medical Association Journal, 185, E669-E680. http://dx.doi.org/10.1503/cmaj.121795

comments powered by Disqus

Copyright © 2014 by authors and Scientific Research Publishing Inc.

Creative Commons License

This work and the related PDF file are licensed under a Creative Commons Attribution 4.0 International License.