39 Views of family caregivers on advance care planning in advanced dementia care in Hong Kong

<h3>Aim</h3> The study aims to explore the views of family caregivers of people with advanced dementia (PWAD) on ACP and to understand the process and their perceived outcomes. <h3>Background</h3> ACP can be helpful for person-centered dementia care, but it is unfamiliar to the residents of Hong Kong. <h3>Methods</h3> Twenty-three interviews were conducted with the family caregivers who attended the structured ACP education talks. The interviews were transcribed and then coded using a thematic analysis framework. <h3>Results</h3> Emerging themes include (1) Receptive to ACP, (2) Family consensus in decision-making, (3) Mixed emotions, (4) Barriers of ACP, and (5) Benefits of ACP. The take-up rate of ACP discussion was low. The family caregivers were receptive to ACP when patients had previously expressed wishes to forgo treatments, previous crisis episodes, or repeated hospital admissions. Family caregivers believed that patients’ early involvement in ACP was essential. They found it challenging to start the conversation, and the local culture evaded the topic. Their expectation of more follow-up care upon ACP discussion was not met. ACP discussions increased communication among family members and attempts to communicate with patients. Family caregivers were prepared for the patient’s death with ACP discussions, which minimized unfinished business. <h3>Discussion</h3> The data provided suggestive patterns of ACP progression. The Behavior Change Resource Model is adopted to interpret the results. The healthcare team was the external resource for considering ACP (Theme 1). The caregivers experienced various internal struggles and mixed emotions (Theme 2) with deliberation to overcome the ACP barriers (Theme 3), their internal reflective resources. Building family consensus (Theme 4) and consequently achieving the benefits of ACP (Theme 5) could be viewed as mobilizing the internal resources to drive the completion of ACP. Family caregivers who cannot mobilize their internal resources can be seen as stagnant in progressing the ACP process. <h3>Unique Contribution</h3> The study addresses the long-neglected needs of PWAD through early discussion for future care. The study adds insights into ACP for PWAD through the family caregivers’ perspective. <h3>Implication</h3> Healthcare professionals can encourage ACP discussion when patients and family caregivers have come to terms with the diagnosis and prognosis. ACP can raise family caregivers’ expectations of end-of-life care. Meeting the care expectations of the families relies more on the actual care practices provided than solely on the documentation of forgoing treatments or AMD. Proper training for healthcare professionals is crucial for initiating, facilitating, and implementing ACP.