Advance care planning (ACP) for older adults with dementia

Dr. Linda Lee

Award: Phoenix Project Fellowship (2018)

Co-Sponsor: The Centre for Family Medicine, Family Health Team

  • Person-centered care

Linda designed her fellowship to help frontline healthcare workers improve timely, sensitive, person-centred advance care planning (ACP).  In particular, she was interested in how to offer ACP to older adults with dementia and include their care partners. This involves facilitating important discussions and documenting an individual’s goals, values, and preferences for their end-of-life healthcare. 

Research studies suggest that few people with dementia have ACP in place. With ACP in place, we can reduce uncertainty and emotional stress for family caregivers who may be faced with complex decisions for loved ones who are nearing the end of their lives. If we know a person’s preferences we can avoid unwanted medical investigations and interventions. 

ACP discussions with older adults who live with dementia present unique challenges:

  • The need for discussions at early stages of the illness so that people have the capacity to make decisions and accurately express their healthcare preferences
  • Difficulty in knowing when the final phase of this illness will happen 
  • Effective documentation to meaningfully guide end-of-life decisions potentially many years in the future 

By sharing a practical approach for ACP planning with provincial and national frontline workers, Linda hopes to enable more humane, person-centered end-of-life care that is respectful of an individual’s preferences, values, and goals.