Patient- and Caregiver-Identified Goals for Advance Care Planning in Patients With Dementia or Cognitive Impairment

Despite an aging population and acknowledged importance of advance care planning (ACP) for persons living with cognitive impairment, few engage in ACP. Most existing tools to facilitate ACP discussions focus on medical outcomes, despite research documenting that persons with cognitive impairment often have quality of life outcomes as primary goals. A tool for ACP that incorporates a range of outcomes that are most important to persons with cognitive impairment and their carers is needed. This qualitative study engaged persons with mild cognitive impairment (MCI) or dementia and their carers to identify outcomes that are most important to inform development of a tool to guide ACP interventions with this population. We conducted interviews with 17 persons with MCI or dementia and 15 caregivers of persons with MCI or dementia. Interviews explored participants' prior experiences with ACP and goals for care planning. Content analysis was used to generate a list of outcomes identified as most important to persons with MCI or dementia and their carers. The list of person-centered outcomes was refined/categorized by research team consensus. Most participants in the sample had not participated in a prior ACP conversation with a primary care provider. Participants identified 23 outcome categories for ACP interventions within the following six domains: social life, family involvement, current lifestyle, physical independence, financial independence and healthcare goals. Of the 23 outcome categories, the majority (86%) were quality of life goals and only a small fraction (14%) were healthcare specific. The outcomes identified as most important to persons with MCI or dementia and their caregivers can be used as a foundation for future work focused on developing an ACP tool to guide shared decision-making about healthcare. This tool can facilitate prioritization of goals that are most meaningful to persons with cognitive impairment and their carers as opposed to focusing only on medical aspects of care.