Review of Programs for Persons Facing Death with Dementia

Abstract

Background: Persons with advanced dementia cannot initiate activities because of the executive dysfunction. The lack of activities was identified as one of the most important factors contributing to behavioral problems of these persons. The unmet needs were boredom/sensory deprivation, loneliness/need for social interaction, and need for meaningful activities. There is a need for activities designed specifically for residents with advanced dementia.

Objective: A description of patient's needs and of programs that intend to maintain quality of life for people with dementia and facing death.

Data sources: A literature review of programs used for persons with advanced dementia and residing in long-term facilities, using the PubMed data base and collateral sources.

Results: Since palliative care is appropriate for persons with advanced dementia, attention has to be paid to three following important aspects of care: Medical issues, behavioral symptoms, and meaningful activities. Medical interventions should be limited to those which have more benefits than burdens, behavioral symptoms should be distinguished according to the context in which they occur, and treated by non-pharmacological interventions that involve meaningful activities. This review describes four programs that may promote the quality of life in persons with advanced dementia and facing death. They are designed for persons with advanced dementia, taking into account their functional impairments. Most of these programs involve short infrequent sessions. In contrast, Namaste Care is a daily extended program of enhanced nursing care that can provide quality of life until the last breath.

Conclusions: It is possible to maintain quality life for people with advanced dementia if a special program of activities is available.

Keywords: activities; dementia; end-of-life; quality of life.

Figure 1

Types of dementia care (PWD = person with dementia) (reprinted with permission from Progress in Palliative Care 21(3), 146–150, 2013) [3].

Figure 2

Dementia progression and prioritizing of care goals (reprinted with permission from van der Steen et al., Palliative Medicine 28(3), 197–209, 2014) [2].

Figure 3

Overview of the study selection process.

Figure 4

Namaste Care principles and consequences.