Understanding the Perspectives of Seniors on Dementia and Decision-Making

Abstract Background The legal doctrine of capacity, which governs legally-authorized intervention in the decision-making of persons with dementia, has been subject to recent scholarly criticism and reform efforts. Such efforts require a coherent normative theory of when and how intervention in the decision-making of those with dementia is appropriate. This mixed-methods study sought to understand the perspectives of seniors on this normative question. Methods A survey, including closed- and open-ended questions and conversational interviews, was conducted. Results Quantitative results of 236 seniors were heterogeneous but showed important patterns. Qualitative results from survey data and interviews of 25 seniors presented 6 key themes: (1) a difficulty of giving concrete answers; (2) reliance on professional opinions; (3) concern for personal identity; (4) fear of abuse; (5) trust of family; and (6) fear of dementia. Conclusions The study suggests support among seniors for: (1) a model of “supported decision-making” rather than “surrogate decision-making;” (2) a presumption that in order to preclude a person with dementia from making more “personal” decisions a more heightened showing of incapacity is required; and (3) a shift to a model of capacity as based more on features such as long term memory and relationships rather than cognitive functions or values. In reforming our understandings of capacity, ethicists and practitioners will have to navigate tensions found in the qualitative data, including: (1) between participants’ fear of abuse and their expressions of trust in family members to decide when intervention is appropriate; and (2) between expressions of confidence in medical professionals’ ability to tell participants when they are no longer able to make decisions and participants’ own understanding of the question in terms of the philosophical construct of personal identity.