Family members' attitudes regarding end-of-life interventions for patients with dementia

Dementia is an umbrella term for a range of chronic conditions that affect memory, cognition, language, and behavior.  
With rising life expectancy, the number of individuals living with dementia is expected to grow significantly, and correspondingly, more family members will face the challenges of caregiving.

One of the most significant challenges for family caregivers is making decisions on behalf of the person with dementia, especially regarding end-of-life interventions.  
Research worldwide has shown that advance care planning (ACP) can reduce anxiety, stress, and depression among caregivers, while also enabling more effective and personalized medical care for the person with dementia. However, in Israel, the attitudes of family caregivers toward the specific end-of-life interventions examined in the present study have not yet been explored.  Therefore, the aim of this study was to investigate the perceptions and attitudes of family members caring for people with dementia regarding various therapeutic interventions at the end of life.

This study is part of an international research project led by the University Medical Center in Limburg (UMCL), Netherlands. The broader project examined the attitudes of family caregivers, people with dementia, and physicians toward three types of end-of-life care interventions. The current study focused solely on the views of family caregivers. This is a qualitative, cross-sectional study. After identifying and recruiting family members of people with dementia who agreed to participate, they were shown four short videos, each illustrating one of three types of therapeutic interventions. Participants were then interviewed regarding their attitudes and emotional responses to each intervention. The data was analyzed thematically, with each theme corresponding to one of the intervention types.

Thematic structure of the interventions: 
1. Advance directives: 1.1 Respecting the values and wishes of the person with dementia; 1.2 Regaining a sense of control for the caregiver in uncertain situations; 1.3 Encouraging caregivers to consider end-of-life decisions

2. Use of technology at the end of life: 2.1 Technology as a therapeutic aid balanced with the need for human sensitivity; 2.2 Technology as a means of coping with the loss of communication; 2.3 Ethical and emotional dilemmas surrounding technological use in end-of-life care

3. Euthanasia: 3.1 The caregiver's desire to reduce suffering and enable a dignified death; 3.2 The tension between easing suffering and upholding personal or cultural values; 3.3 The perceived inappropriateness of euthanasia in advanced stages of dementia

Most participants expressed support for advance directives, driven by the desire to honor the wishes of their loved one when they can no longer express themselves.  
The use of technology was also generally supported, especially as a communication tool to better understand the person’s physical needs in advanced stages. However, concerns were raised about the potential loss of human connection and emotional sensitivity. By contrast, euthanasia was met with widespread opposition, primarily for religious, moral, and legal reasons. Nevertheless, some participants voiced frustration over their limited ability to relieve their loved one’s suffering through other means.

These findings highlight the emotional, ethical, and social complexity faced by family caregivers, who are motivated not only by medical responsibility but by a profound commitment to preserving the dignity, identity, and autonomy of the person with dementia, even when their voice is no longer present.

The moment of diagnosis emerged as a critical turning point for family members, yet support at this stage remains insufficient. We therefore recommend the development of a comprehensive support package for family caregivers that includes emotional, practical, and legal assistance, aiming to reduce the anxiety, confusion, and helplessness that often accompany caregiving for a loved one with dementia.