Palliative and Supportive Care

Original Articles

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

Genevieve N. Thompsona1 c1 and Kerstin Rogera2

a1 Faculty of Nursing, University of Manitoba, Manitoba Palliative Care Research Unit, Winnipeg, Canada

a2 Department of Family Social Sciences, University of Manitoba, Winnipeg, Canada

Abstract

Objectives: 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.

Methods: 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.

Results: 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.

(Received November 14 2012)

(Accepted January 06 2013)

Keywords

  • Dementia caregivers;
  • Needs;
  • Palliative care;
  • Health services

Correspondence

c1 Address correspondence and reprint requests to: Genevieve N. Thompson, Manitoba Palliative Care Research Unit, 3017-675 McDermot Avenue, Winnipeg, MB R3E 0V9 Canada. Email: genevieve.thompson@ad.umanitoba.ca