Preferences and attitudes of people with dementia regarding therapeutic interventions at the end of life

Dementia is an acquired loss of cognition in multiple cognitive domains, severe enough to affect personal-functional, social, or occupational functioning. Dementia gradually impairs memory, thinking ability, orientation in time and space, and the ability to recognize people and objects, and as a result, there is also a gradual decline in the ability to perform daily activities and communicate with the environment. Specifically, for people with dementia, there is a significant challenge surrounding decision-making regarding medical interventions at the end of life. As the disease progresses, the person’s ability to make decisions for themselves gradually decreases, and sometimes decision-making is transferred to another person, usually a family member. As a result, for family members, there is ethical complexity regarding preserving the wishes and dignity of the person with dementia.

Against the background of this complexity, the importance of advance care planning arises. The use of advance care planning allows a person to express in advance their wishes and preferences regarding future end-of-life care in accordance with their values and perceptions, thereby preserving their wishes even when the ability to make decisions is impaired. Moreover, advance care planning may ease the burden on family members when making future decisions. Currently, there are few studies examining the perspective of people with dementia regarding end-of-life care interventions, and in Israel, their preferences and attitudes regarding end-of-life care interventions have not yet been examined. Therefore, the aim of the present study was to examine the attitudes and preferences of people with dementia regarding possible end-of-life care interventions.

The study is part of an international project of the LUMC University Medical Center in the Netherlands, which examined the attitudes of people with dementia, family caregivers, and treating physicians regarding end-of-life care interventions for people with dementia. The present study focused only on the attitudes of people with dementia in the early stages of the disease in relation to these interventions. The study is a qualitative phenomenological cross-sectional study, which included eight interviews with people with dementia in the early stages, with each interview conducted separately and lasting approximately 60–90 minutes. Participants were asked about their attitudes and preferences regarding three types of interventions presented. Data analysis was conducted thematically, with the themes relating to three types of care interventions. Each type of intervention was formed into a central theme, and each theme was divided into two sub-themes reflecting different aspects.

Regarding advance directives, most participants expressed support מתוך a desire to be involved in decision-making concerning their future and to ensure that their voice would be heard. Alongside this, there was also a desire to ease the burden on family members and prevent them from carrying a future burden in the context of decision-making. The discussion about the use of technology at the end of life raised various issues, as participants expressed a desire to preserve humanity, active presence, and personal identity in the face of technology, even in situations where the ability to express oneself weakens. However, concern was also raised that such use might lead to a loss of the sense of control. Regarding euthanasia, some participants expressed support and viewed it as a solution for suffering when there is no hope for change. In contrast, others expressed opposition due to various considerations, including legal and religious constraints.

These findings emphasize that the discussion about attitudes and perceptions regarding end-of-life care interventions for people with dementia is not only medical but also reflects emotional and ethical worlds. There is emotional and familial complexity accompanying the process of end-of-life decision-making for people with dementia. Therefore, understanding the attitudes and preferences of people with dementia may contribute to the development of sensitive and tailored professional discourse, which encourages listening to their voice and enables them to express their wishes and preferences, thereby contributing to a sense of autonomy and the preservation of dignity.