Perceptions of persons with dementia on what matters in making decisions about advance care planning



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With an aging Baby Boomer population, dementia in the United States is a prevalent disease. Persons with dementia (PWDs) often do not receive person-centered care at end of life because they are excluded from conversations between healthcare providers and family caregivers, and are often unable to communicate their wishes at end of life because of the severity of dementia affecting them. Engaging PWDs in advance care planning (ACP) is a strategy to increase person-centered care at the end of life for this population. However, ACP engagement rates among PWDs continue to be substellar. Thus, a secondary analysis was performed with a qualitative descriptive design in order to describe how PWDs make decisions about engaging in ACP, as well as what facilitators and barriers exist when it comes to engaging in ACP. Findings were examined through the lens of the Ottawa Decision Support Framework. The original study had a convenience sample of seven PWDs and family caregiver dyads, as well as four health care providers, who participated in cognitive interviews about a decision aid for ACP amongst PWDs. The mean age for caregivers was 63 years old, and six of the caregivers were younger than 65 years old. All PWDs were over 65 years old, with the youngest PWD being 77 years old and a mean age of 83 years old. Content analysis of the cognitive interviews revealed PWDs’ lack of knowledge about ACP concepts and process; the benefits of ACP to caregivers as surrogate decision-makers; caregivers’ essential role in facilitating PWD’s ACP engagement; support from family for PWDs to engage in ACP; PWDs’ trust of caregivers to know and make the right decisions; the roles of caregivers; PWD’s distrust of health care providers; health care providers’ role in facilitating ACP; PWD’s readiness to complete ACP tasks. These findings were also identified as facilitators and barriers. Findings from this study highlighted the importance of family caregivers being included in ACP conversations along with PWDs. These findings inform future research and nursing practice regarding ACP being an ongoing process that needs to occur early for PWDs.



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