Challenges of anticipation of future decisions in dementia and dementia research

Abstract

Anticipation of future decisions can be important for individuals at risk for diseases to maintain autonomy over time. For future treatment and care decisions, advance care planning is accepted as a useful anticipation tool. As research with persons with dementia seems imperative to develop disease-modifying interventions, and with changing regulations regarding research participation in Germany, advance research directives (ARDs) are considered a solution to include persons with dementia in research in an ethically sound manner. However, little is known about what affected people deem anticipatable.This contribution provides a critical reflection of the literature on anticipation and of a qualitative study on the assessment of ARDs with persons with cognitive impairment in Germany. It combines theoretical and empirical reflections to inform the ethical-legal discourse.Anticipation involves the conceptual separation of the past, the present, and the future. Including dimensions such as preparedness, injunction, and optimization helps in establishing a framework for anticipatory decision-making. While dementia may offer a window of time to consider future decisions, individual beliefs about dementia including fears about stigma, loss of personhood, and solitude strongly impact anticipating sentiments. Concepts of anticipation can be useful for the examination of uncertainty, changing values, needs, and preferences interconnected with the dementia trajectory and can serve as a means to make an uncertain future more concrete. However, fears of losing one’s autonomy in the process of dementia also apply to possibilities of anticipation as these require cognitive assessment and reassessment of an imagined future with dementia.

‘It’s not making a decision, it’s prompting the discussions’: a qualitative study exploring stakeholders’ views on the acceptability and feasibility of advance research planning (CONSULT-ADVANCE)

“…In this study, and similarly in the preceding survey [21], participants generally viewed ARP as a process to encourage people to express their values, wishes and preferences -rather than it constituting an advance decision. This was based on their view about the likelihood of having su cient information upon which a 'decision' could be made, the challenges of 'predictive ability' and anticipating future decisions that may particularly affect people with cognitive impairment [39], and their uneasiness about balancing (or prioritising) a person's previously expressed decision to participate against what is in their current interests. Some participants accepted that there was utility in more speci c preferences which could constitute informed consent for a study, for example in time-critical trials where there is no ability to involve alternative decision-makers.…”