End-of-life decision making in dementia The perspective of family caregivers

• Published in: Dementia (London, England) Vol. 4; no. 1; pp. 113 - 136
• Main Authors: Caron, Chantal D., Griffith, Jennifer, Arcand, Marcel
• Format: Journal Article
• Language: English
• Published: Thousand Oaks, CA Sage Publications 01.02.2005; Sage Publications Ltd. (UK)
• Subjects: Caregivers; Case studies; Dementia; Ethics; Medical care; Medical treatment; Older persons; Palliative treatment; Practice; Quality of life; Services; Social care; Surveys; Canada; treatment consensus; ethics; quality of life; grounded theory; end-of-life care
• ISSN: 1471-3012; 1741-2684
• DOI: 10.1177/1471301205049193

Family caregivers are often required to make treatment decisions on behalf of institutionalized loved ones with advanced-stage dementia. Deciding on appropriate treatment is a complex process which can be difficult for families. This grounded theory study examined the concerns of family caregivers regarding their relative’s care and explored how end-of-life treatment decisions are made. Data were collected from in-depth interviews with 24 caregivers and analysed using constant comparison and dimensional analysis, resulting in a substantive theory of decision making. The role of decision maker from the perspective of family caregivers is described. The relative’s level of quality of life emerged as central to decision making. Four end-of-life phases were identified in which treatment intensity was influenced by the caregivers’ evaluation of quality of life. The results highlight the importance of including family caregivers’ experiences in working toward caregiver/medical team consensus around treatment decisions at the end of life in dementia.