Strategies to support decision making
Individuals living with dementia shared ways they continued to participate in decision-making. This included using coping strategies and relying on trusted relationships.
Coping strategies included writing things down, making major decisions in advance, and weighing pros and cons. Participants asked clarifying questions, used positive self-talk, did their research, and ensured they had enough time to make decisions.
People living with dementia also highlighted the importance of having someone they trust to help make decisions. Many participants shared how their partner or family member was a part of helping them make decisions. This help included consultation about decisions, reminders, and conversations early in the diagnosis.
Care partners also shared strategies to support their family member in decision-making. Some care partners acted as an advocate and translator in the health care system. They also used communication strategies with the family member such as providing limited options and choosing which time of day to have conversations. Again, communication was key. Ahmed shared, “One of the things I also recognize is if I don’t prompt these discussions, she won’t bring it up… As long as there’s some level of interchange then you can continue doing it.”
Participants also mentioned they needed trusted professionals to support their decisions. This included financial planners, accountants, doctors, or other professionals.
In the words of Vanessa, “What we also must have is a change in attitude. That is done one on one at an individual level and also at an institutional level. [We] also need a greater understanding of different communication needs and styles and not to stereotype people as a result of that.”
Professionals and family members can respect the personhood of people living with dementia by taking enough time to discuss decisions, seeing the person behind the disease, and treating them with dignity. Professionals can also help by ensuring access to timely information about personal planning and becoming informed on dementia and decision-making.
The project is funded by the Vancouver Foundation. Key project partners are the Alzheimers Society, the Centre for Research on Personhood in Dementia, and Family Caregivers of British Columbia.
* All names of participants are pseudonyms.