Introduction Advance care planning is advocated for people with dementia, yet discussions with this group are rare, particularly in long-term care settings. The role of health care professionals and family are pivotal, therefore further understanding of their perspective is needed.
Aim To examine the understanding and experience of family caregivers of people with dementia and health care professionals regarding the process of advance care planning.
Methods Sequential explanatory mixed methods design incorporating 3 phases was adopted.
Results All three groups had poor knowledge of advance care planning, particularly the legal aspects. Whilst health care professionals and families considered there were benefits, there were challenges to implementation in this setting. These included: concerns regarding the ability of the person with dementia to engage, the increased role of the family, a lack of context specific guidance, and a knowledge deficit regarding dementia and advance care planning.
There was widespread variations in perspectives, including when it should be implemented, who should be responsible and what it should focus on. The GP played a key role, whilst nursing staff remained on the periphery. Families were central in the decision making process, yet their ability was influenced by a limited awareness of dementia, decisional burden due to guilt and anticipatory grief, and a limited ability to reflect the wishes of the person with dementia.
Conclusions Advance care planning for people with dementia is a complex process within nursing homes, influenced by multiple factors related to the setting, the perspectives of those involved and the context of dementia itself.
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