Planning end-of-life care for patients with dementia: roles of families and health professionals.

C. E. Gessert, S. Forbes, M. Bern-Klug

Research output: Contribution to journalArticlepeer-review

77 Scopus citations


We examined families' end-of-life decision making and their interactions with health professionals. Twenty-eight family members of institutionalized dementia patients participated in four focus groups. We found that participating family members were not well prepared for their decision-making roles, and that they: 1) experienced substantial burdens and loss in caring for institutionalized elders; 2) had limited understanding of the natural progression of dementing conditions; 3) were uncomfortable in setting goals for their relatives' end-of-life care; 4) had little experience with death, and were ambivalent about the anticipated death of their relative; and (5) reported that they had little substantive communication with health professionals regarding end-of-life care planning. We concluded that many of the needs of such families could be addressed through improved application of the principles of advance care planning, including regular structured discussions, involvement of surrogate decision-makers, and anticipation of clinical decisions. Health professionals should take the lead in 'normalizing' the discussion of death.

Original languageEnglish (US)
Pages (from-to)273-291
Number of pages19
Issue number4
StatePublished - 2000


Dive into the research topics of 'Planning end-of-life care for patients with dementia: roles of families and health professionals.'. Together they form a unique fingerprint.

Cite this