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Understanding the needs of family caregivers of older adults dying with dementia

  • Genevieve N. Thompson (a1) and Kerstin Roger (a2)

A challenge in understanding the needs of dementia family caregivers (DFC) within the purview of dementia as a terminal illness rests on the fact that literature in this area is dispersed across disciplines and not specifically grounded within the realm of palliative care. The objective of this paper is to describe the domains of DFC needs and their impact on the delivery of palliative care services.


A literature search pertaining to dementia family caregivers and palliative/end-of-life care was conducted using the databases Medline, CINHAL, Ageline, PsychInfo, and Scopus for articles published in the English language between 1997 and 2011.


Supporting family caregivers of individuals with dementia throughout the disease trajectory requires consideration of caregivers : (1) physical, emotional, and psychological needs; (2) information and decisional support needs; and (3) instrumental support needs. The unique nature and prolonged duration of these needs directly influences the palliative care services and supports required by these family caregivers.

Significance of results:

Understanding the scope of DFC needs help further our understanding of how these needs may impact the delivery of palliative care services, and assists in developing a model of care for those dying from dementia and for their family caregivers.

Corresponding author
Address correspondence and reprint requests to: Genevieve N. Thompson, Manitoba Palliative Care Research Unit, 3017-675 McDermot Avenue, Winnipeg, MB R3E 0V9Canada. Email:
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Albinsson, L. & Strang, P. (2002). A palliative approach to existential issues and death in end-stage dementia care. Journal of Palliative Care, 18, 168174.
Albinsson, L. & Strang, P. (2003). Differences in supporting families of dementia patients and cancer patients: A palliative perspective. Palliative Medicine, 17, 359367.
Alzheimer Society of Canada. (2010). Rising Tide: The Impact of Dementia on Canadian Society. Toronto, ON: Alzheimer Society of Canada.
Black, B.S., Fogarty, L.A., Phillips, H., et al. (2009). Surrogate decision makers' understanding of dementia patients' prior wishes for end-of-life care. Journal of Aging and Health, 21, 627650.
Black, S.E., Gauthier, S., Dalziel, W., et al. (2010). Canadian Alzheimer's disease caregiver survey: Baby-boomer caregivers and burden of care. International Journal of Geriatric Psychiatry, 25, 807813.
Black, W. & Almeida, O.P. (2004). A systematic review of the association between the behavioral and psychological symptoms of dementia and burden of care. International Psychogeriatrics/IPA, 16, 295315.
Caron, C.D., Griffith, J. & Arcand, M. (2005). Decision making at the end of life in dementia: How family caregivers perceive their interactions with health care providers in long-term-care settings. The Journal of Applied Gerontology, 24, 231247.
Casarett, D., Takesaka, J., Karlawish, J., et al. (2002). How should clinicians discuss hospice for patients with dementia? Anticipating caregivers' preconceptions and meeting their information needs. Alzheimer Disease and Associated Disorders, 16, 116122.
Chang, E., Easterbrook, S., Hancock, K., et al. (2010). Evaluation of an information booklet for caregivers of people with dementia: An Australian perspective. Nursing & Health Sciences, 12, 4551.
Covinsky, K.E. (2004). Dementia, prognosis, and the needs of patients and caregivers. Annals of Internal Medicine, 140, 573575.
Cuijpers, P. (2005). Depressive disorders in caregivers of dementia patients: A systematic review. Aging & Mental Health, 9, 325330.
Diwan, S., Hougham, G.W. & Sachs, G.A. (2009). Chronological patterns and issues precipitating grieving over the course of caregiving among family caregivers of persons with dementia. Clinical Gerontologist, 32, 358370.
Diwan, S., Hougham, G.W. & Sachs, G.A. (2004). Strain experienced by caregivers of dementia patients receiving palliative care: Findings from the palliative excellence in Alzheimer care efforts (PEACE) program. Journal of Palliative Medicine, 7, 797807.
Doka, K. (2004). Grief and dementia. In Living with Grief: Alzheimer's Disease, Doka, K. (ed.). Washington, DC: Hospice Foundation of America.
Downs, M., Small, N. & Froggatt, K. (2006). Explanatory models of dementia: Links to end-of-life care. International Journal of Palliative Nursing, 12, 209213.
Feinberg, L.F., & Whitlatch, C.J. (2002). Decision-making for persons with cognitive impairment and their family caregivers. American Journal of Alzheimer's Disease and Other Dementias, 17, 237244.
Forbes, S., Bern-Klug, M. & Gessert, C. (2000). End-of-life decision making for nursing home residents with dementia. Journal of Nursing Scholarship, 32, 251258.
Garand, L., Lingler, J.H., Deardorf, K.E., et al. (2011). Anticipatory grief in new family caregivers of persons with mild cognitive impairment and dementia. Alzheimer Disease and Associated Disorders, doi: 10.1097/WAD.0b013e31822f9051.
Gaspard, G. & Roberts, D. (2009). Palliative dementia care: A blended model. Canadian Nursing Home, 20, 2124.
Gaugler, J.E., Anderson, K.A., Leach, M.S., et al. (2004a). The emotional ramifications of unmet need in dementia caregiving. American Journal of Alzheimer's Disease and Other Dementias, 19, 369380.
Gaugler, J.E., Anderson, K.A., Zarit, S.H., et al. (2004b). Family involvement in nursing homes: Effects on stress and well-being. Aging and Mental Health, 8, 6575.
Gaugler, J.E., Kane, R.L., Kane, R.A. et al. (2005). Unmet care needs and key outcomes in dementia. Journal of the American Geriatrics Society, 53, 20982105.
Givens, J.L., Kiely, D.K., Carey, K. & Mitchell, S.L. (2009). Healthcare proxies of nursing home residents with advanced dementia: Decisions they confront and their satisfaction with decision-making. Journal of the American Geriatrics Society, 57, 11491155.
Hebert, R.S., Schulz, R., Copeland, V., et al. (2008). What questions do family caregivers want to discuss with health care providers in order to prepare for the death of a loved one? An ethnographic study of caregivers of patients at end of life. Journal of Palliative Medicine, 11, 476483.
Hebert, R.S., Schulz, R., Copeland, V.C., et al. (2009). Pilot testing of a question prompt sheet to encourage family caregivers of cancer patients and physicians to discuss end-of-life issues. The American Journal of Hospice & Palliative Care, 26, 2432.
Hennings, J. & Keady, J. (2010). Approaching the end of life and dying with dementia in care homes: The accounts of family carers. Reviews in Clinical Gerontology, 20, 114127.
Hertzberg, A., Ekman, S.L. & Axelsson, K. (2001). Staff activities and behaviour are the source of many feelings: Relatives' interactions and relationships with staff in nursing homes. Journal of Clinical Nursing, 10, 380388.
Holley, C.K., & Mast, B.T. (2009). The impact of anticipatory grief on caregiver burden in dementia caregivers. The Gerontologist, 49, 388396.
Hurley, A.C., Volicer, L. & Blasi, Z.V. (2000). End-of-life care for patients with advanced dementia. Journal of the American Medical Association, 284, 24492450.
Joling, K.J., van Hout, H.P., Schellevis, F.G., et al. (2010). Incidence of depression and anxiety in the spouses of patients with dementia: A naturalistic cohort study of recorded morbidity with a 6-year follow-up. The American Journal of Geriatric Psychiatry, 18, 146153.
Kitwood, T. (1997). The experience of dementia. Aging and Mental Health, 1, 1322.
Loos, C. & Bowd, A. (1997). Caregivers of persons with Alzheimer's disease: Some neglected implications of the experience of personal loss and grief. Death Studies, 21, 501514.
Lopez, R.P. (2009). Doing what's best: Decisions by families of acutely ill nursing home residents. Western Journal of Nursing Research, 31, 613626.
Mahon, M.M. & Sorrell, J.M. (2008). Palliative care for people with Alzheimer's disease. Nursing Philosophy: An International Journal for Healthcare Professionals, 9, 110120.
Marziali, E., Shulman, K. & Damianakis, T. (2006). Persistent family concerns in long-term care settings: Meaning and management. Journal of the American Medical Directors Association, 7, 154162.
McCarthy, M., Addington-Hall, J. & Altmann, D. (1997). The experience of dying with dementia: A retrospective study. International Journal of Geriatric Psychiatry, 12, 404409.
Meuser, T.M. & Marwit, S.J. (2001). A comprehensive, stage-sensitive model of grief in dementia caregiving. The Gerontologist, 41, 658670.
Mitchell, S.L., Kiely, D.K. & Hamel, M.B. (2004). Dying with advanced dementia in the nursing home. Archives of Internal Medicine, 164, 321326.
Mitchell, S.L., Teno, J.M., Kiely, D.K., et al. (2009). The clinical course of advanced dementia. The New England Journal of Medicine, 361, 15291538.
Norton, S.A. & Talerico, K.A. (2000). Facilitating end-of-life decision-making: Strategies for communicating and assessing. Journal of Gerontological Nursing, 26, 613.
Okura, T. & Langa, K.M. (2011). Caregiver burden and neuropsychiatric symptoms in older adults with cognitive impairment: The aging, demographics, and memory study (ADAMS). Alzheimer Disease and Associated Disorders, 25, 116121.
Ory, M., Yee, J., Tennstedt, S., et al. (2000). The extent and impact of dementia care: Unique challenges experienced by family caregivers. In Handbook of Dementia Caregiving: Evidence-Based Interventions For Family Caregivers, Schulz, R. (ed.), pp. 132. New York: Springer Publishing Company.
Ory, M.G., Hoffman, R.R., Yee, J.L., et al. (1999). Prevalence and impact of caregiving: A detailed comparison between dementia and nondementia caregivers. The Gerontologist, 39, 177185.
Palliative Care Australia. (2005). A guide to palliative care service development: A population based approach. Palliative Care Australia, (Accessed on June 14, 2013).
Parker, S.M., Clayton, J.M., Hancock, K., et al. (2007). A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: Patient/caregiver preferences for the content, style, and timing of information. Journal of Pain and Symptom Management, 34, 8193.
Pashby, P., Hann, J. & Sunico, M.E. (2009). Dementia care planning: Shared experience and collaboration. Journal of Gerontological Social Work, 52, 837848.
Peeters, J.M., Van Beek, A.P., Meerveld, J.H., et al. (2010). Informal caregivers of persons with dementia, their use of and needs for specific professional support: A survey of the national dementia programme. BMC Nursing, 9, 9.
Ponder, R.J. & Pomeroy, E.C. (1996). The grief of caregivers: How pervasive is it? Journal of Gerontological Social Work, 227, 321.
Robinson, L., Huges, J., Daley, S., et al. (2005). End-of-life care and dementia. Reviews in Clinical Gerontology, 15, 135148.
Russell, C., Middleton, H. & Shanley, C. (2008). Dying with dementia: The views of family caregivers about quality of life. Australasian Journal on Ageing, 27 8992.
Sachs, G.A., Shega, J.W. & Cox-Hayley, D. (2004). Barriers to excellent end-of-life care for patients with dementia. Journal of General Internal Medicine, 19, 10571063.
Sanders, S., Butcher, H.K., Swails, P., et al. (2009). Portraits of caregivers of end-stage dementia patients receiving hospice care. Death Studies, 33, 521556.
Sanders, S., Ott, C.H., Kelber, S.T., et al. (2008). The experience of high levels of grief in caregivers of persons with Alzheimer's disease and related dementia. Death Studies, 32, 495523.
Schulz, R., Belle, S.H., Czaja, S.J., et al. (2004). Long-term care placement of dementia patients and caregiver health and well-being. Journal of the American Medical Association, 292, 961967.
Schulz, R., Boerner, K., Shear, K., et al. (2006). Predictors of complicated grief among dementia caregivers: A prospective study of bereavement. The American Journal of Geriatric Psychiatry, 14, 650658.
Schulz, R. & Martire, L.M. (2004). Family caregiving of persons with dementia: Prevalence, health effects, and support strategies. The American Journal of Geriatric Psychiatry, 12 240249.
Schulz, R., Mendelsohn, A.B., Haley, W.E., et al. (2003). End-of-life care and the effects of bereavement on family caregivers of persons with dementia. The New England Journal of Medicine, 349, 19361942.
Sorensen, S. & Conwell, Y. (2011). Issues in dementia caregiving: Effects on mental and physical health, intervention strategies, and research needs. The American Journal of Geriatric Psychiatry, 19, 491496.
Torke, A.M., Holtz, L.R., Hui, S., et al. (2010). Palliative care for patients with dementia: A national survey. Journal of the American Geriatrics Society, 58, 21142121.
Volicer, L., Hurley, A.C. & Blasi, Z.V. (2003). Characteristics of dementia end-of-life care across care settings. The American Journal of Hospice & Palliative Care, 20, 191200.
Wang, Y.N., Shyu, Y.I., Chen, M.C., et al. (2011). Reconciling work and family caregiving among adult-child family caregivers of older people with dementia: Effects on role strain and depressive symptoms. Journal of Advanced Nursing, 67, 829840.
Wolf-Klein, G., Pekmezaris, R., Chin, L., et al. (2007). Conceptualizing Alzheimer's disease as a terminal medical illness. American Journal of Hospice and Palliative Care, 24, 7782.
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