Abstract

Background Advance care planning (ACP) is a continuous process of conversations, discussions and engagement involving patients, caregivers and healthcare providers. For persons with mild dementia, ACP serves as a window of opportunity for on-going discussions about future health care while still maintaining decisional capacity. Aim To evaluate the benefits of ACP for caregivers of persons with mild dementia of predominantly Chinese ethnicity. Methods We recruited 20 English-speaking patient-caregiver dyads, who were predominantly Chinese. Patient-caregiver dyads underwent ACP counselling by a trained ACP facilitator, completed pre-post surveys and participated in post-counselling interviews. We then conducted a concurrent explanatory mixed methods analysis. Results Prior to ACP counselling, 50% of caregivers had heard of ACP and of these, only half had planned for future care. Post ACP counselling (n = 19), majority found ACP helpful in understanding complications of dementia and exploring preferences for future treatment. Among 10 caregivers who had not heard of ACP, 5 proceeded to have further discussions after ACP counselling. ACP enhances caregivers’ understanding of dementia and the persons with dementia, leading to initiation of conversations involving end-of-life care decisions that incorporate the patients’ perspectives, planning for future care, and early involvement of other care providers (physicians and family members). Discussion ACP in the mild stages of dementia promotes patient-centred care by enhancing caregiver’s understanding and stimulating further conversations between patients and caregivers. Conclusion Future research should focus on the congruency of decision-making on future healthcare preferences between patients and caregivers to further explore the utility of ACP in mild dementia.

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