Engaging People Living with Dementia in Decision-Making
People living with dementia are capable of making their own decisions, particularly if they have support from people they trust.
This article was written by a guest contributor, and the views, thoughts, and opinions expressed in this article belong solely to the author.
It’s very important to me to have the quality of life that I want rather than somebody else dictating it to me.
– Zenaida, a person living with dementia
In British Columbia, the law says that all adults are presumed to be capable of making their own decisions regardless of disability
In practice, despite these legal rights, people living with dementia are often excluded from decision-making. There is an evident lack of awareness on how many people living with dementia can make their own choices, particularly if they have support from people they trust.
The Canadian Centre for Elder Law (CCEL) is collaborating with people living with dementia, their care partners, and health care providers to address barriers to participating in decision-making. The end goal is to create resources for healthcare providers on how to support people living with dementia to meaningfully participate in decisions that impact their lives.
Between July and September 2021, we heard from 16 people living with dementia or related diagnoses, 21 people living with other disabilities, and 37 care partners. This article highlights initial themes from these conversations and next steps.
People want to be included
In our discussions with participants living with dementia, many emphasized the importance of being included in all decisions. Ashish* voiced, “I would really want to be not just a rubber stamp, but deeply engrossed [in decisions]… with the help of my partner.”
Individuals told us that it matters for them to be involved in health care decisions, personal and financial planning, everyday decisions, living arrangements, personal care, and end of life. Which decisions they wanted to be more involved varied among participants.
“Something I already put in my medical directive [is] that I want to stay in my home… and I really would like to have the medically assisted suicide, if I can get it,” Zenaida said. “it’s very important to me to have the quality of life that I want rather than somebody else dictating it to me.”
Barriers to inclusion in decision-making
Individuals living with disabilities or dementia shared with us barriers they face to being involved with decisions. These barriers included difficulty navigating the system, attitudes of health care professionals, and lack of communication. Stigma and assumptions about dementia caused health care providers to assume that people were not capable of making decisions.
Lia shared, “Stereotypes hinder a lot of people in their decision-making because they read the diagnosis or whatever on a piece of paper and automatically assume something about that person.”
Joanne is a person living with dementia who shared, “[My friend] always went to my doctor’s with me, and the two of them talked together as if I wasn’t even there… so I got to the point where I wouldn’t take her anymore and he had to talk directly to me.” Joanne’s experience at the doctor’s was echoed by other participants who, in Lia’s words, felt “viewed as a piece of something to be taken care of, not necessarily a person with an identity.”
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.
– Vanessa, care partner
Not black and white
Decision-making with dementia can be a messy process. Some people wrestled with which decisions to hold on to and which to leave with trusted family members as their dementia progressed. Sometimes there was a lack of clarity on how to support decision-making.
“I have a daughter who wants to control everything.” Zenaida shared. “So I have to tell her, manage the investments. You are the beneficiaries of this. I will not even think about what you will decide… but my house, I will take care of my house… Just focus on the things I am giving you… I have to be so careful about that, because some people can be so pressing.”
Care partners also face the complicated position of balancing their interests with that of their family member. They acknowledged the struggle of making decisions on behalf of another person. Others emphasized that they needed to make all decisions on behalf of their family member due to the progression of dementia.
Jose shared, “Sometimes, what was in my best interest was not always hers. I was her agent in effect working [on] her behalf. And I had to factor that in all the decisions that were made.”
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.
Towards change
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.
GET MORE INFORMATION
Get involved! From Fall 2021 to Spring 2022, the CCEL is consulting with people living with dementia and/or disabilities about their inclusion in decision-making.
CCEL will be holding a forum in December on decision making for people living with dementia and other disabilities, and we are also reaching out to key health care stakeholders to learn what would be helpful for them in developing tools to support decision-making. To learn more or get involved, email Jessica at jfehrenbacher@bcli.org or visit our project webpage.
To learn more about the rights of people living with dementia to make decisions, visit our health care decision-making project resources page or review our short powerpoint presentation.
ABOUT THE AUTHOR
Jessica Fehrenbacher is the Outreach and Engagement Coordinator for the Canadian Centre for Elder Law's Engaging People Living with Dementia in Decision-Making project. She has her Masters in Social Work and has experience working with both the dementia and disability community in health care and community settings. Jessica practices health care social work in British Columbia alongside her coordinator role. Her research has been presented at the local, national, and international level. Jessica believes in the inherent worth of each person and in their right to make choices about their lives.
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