Talking about your future health and personal care, what’s important to you and what’s not, can be a challenging conversation, but it’s what Advance Care Planning (ACP) is all about. The aim is to have person-centred care and supports, even if the person isn’t able to speak for themselves. For people living with dementia, there are unique considerations for creating an Advance Care Plan.
“Compared to other serious illnesses, the loss of decision-making capability in its advanced stages is more certain, so the person has a window of time to talk about their wishes and preferences with family, friends and health care providers, and to develop a plan for their care,” says Kathy Sheng, Project Manager.
“With funding from the Public Health Agency of Canada, our project is building on successful, community-led ACP interventions already developed for the general public and cultural groups, and tailoring them to this particular audience.”
Once complete, the project will mobilize and equip community-based organizations to promote awareness of Advance Care Planning for people living with dementia and their family and friends. The BCCPC project will also create dementia-tailored materials so that these organizations can host ACP information sessions and conversation events in a way that’s both safe and enjoyable.
Encouraging ACP engagement for people living with dementia and their family, friends and caregivers faces some common misconceptions.
To begin, people living with dementia and their caregivers are not always well-informed about how the disease progresses, what planning opportunities are available and what options are available for health care and end-of-life care. By opening a conversation about what’s important to the person, what they want, and what they don’t want, they can open the door to becoming more informed about what lies ahead. Best practice indicates that ACP in the early stages of dementia (or even earlier) helps family and friends to make care decisions in keeping with the person’s wishes.
“We have found that there is often a mistaken belief that people living with dementia aren’t capable of making decisions for themselves, but this is not true,” says Kathy Sheng.
People living with mild to moderate dementia do have the capability to make decisions on their own behalf, including health decisions. As their dementia journey continues, they can continue to be involved using a shared decision-making process with family, friends, and health-care providers.
The ACP for People Living with Dementia project reached a milestone this spring, with the publication of the project’s Environmental Scan – an information gathering process that can inform how existing BCCPC resources can be best adapted to support community-based organizations to promote awareness and education about ACP to this population. Information was gathered by literature review, survey of BC organizations, and key informant interviews.
One finding of the scan is that current literature emphasizes a medical model where ACP is limited to a process between patient and health-care provider, and results in an advance directive. Not only is this recognized as not aligning with preference of people living with dementia, it is actually not reflective of actual practices in dementia care.
The environmental scan’s findings, including insights into building a more person-centred approach to ACP, as well as identifying barriers and facilitating factors will form a cornerstone to the project’s outcomes.