Starting and then having on-going conversations about Advance Care Planning (ACP) can be difficult at the best of times, but especially so when a person is living with dementia.
Sadly, the stigma surrounding dementia is often seen as a barrier to involving a person living with dementia in discussions about their wishes for their future health care. Even as their disease progresses, people living with dementia can make their own health care decisions when supported by people they trust.

Some have difficulty accepting the diagnosis, so using terminology as “living well with dementia” or “living with memory loss” rather than “progressing with dementia” and “end of life” may help with these precious conversations. Storytelling of an interactive nature and talking (rather than filling in forms) can make starting the ACP journey a little more comfortable.

So, how do you start? Here are a few tips to begin the talk:

  • Pick a time when the person is the most comfortable, relaxed and alert.
  • Choose a quiet and familiar location.
  • Go slowly and be gentle. These conversations touch on sensitive topics that can make people feel vulnerable and hesitant to talk about them.
  • Be open to several shorter conversations. This will allow time for processing and reflection between conversations.

Recognize that the person can change their mind at any time – so these conversations should not be a one-time event but rather ongoing.
People living with dementia do not follow a consistent path with their illness. They do, however, have the right to be involved in the decision-making process about their future health care to the greatest extent possible – even if they are not capable of making a specific decision with support. Let’s do our best to ensure that people living with dementia receive the support and respect they deserve when making plans about their future health care.

Lorraine Kenney is a retired teacher and a member of Compassionate Communities Kingston’s Advance Care Planning Project Team.
The information in this article comes from a recently published report: ‘Advance Care Planning for people living with dementia and their family caregivers’ by the BC Centre for Palliative Care and funded by the Public Health Agency of Canada.