Uptake of a newly implemented advance care planning program in a dementia diagnostic service

BACKGROUND: Advance care planning (ACP) provides a framework for discussion and documentation of future care preferences when a person loses cognitive capacity. It can assist people in the early stages of dementia to document their preferences for care at later stages of the illness. METHOD: A three-stage project introduced ACP to clients with mild cognitive impairment (MCI) or recently diagnosed dementia and their families through a specialist memory clinic. Over 8 months, all English-speaking clients (n = 97) and carers (n = 92) were mailed a survey assessing completed documentation for future care; understanding of the principles of ACP and willingness to get further information about ACP (Stage 1). Participants wanting more information were invited to a seminar introducing the ACP program and service (Stage 2). Participants wanting to complete ACP documentation could make an appointment with the ACP clinicians (Stage 3). RESULTS: Forty-eight (52.2%) carers and 34 clients (35.1%) responded to the survey. Most clients (62.1%) and carers (79.1%) expressed interest in ACP, and 78.6% of clients and 63.6% of carers believed that clients should be involved in their future medical decisions. Nine clients (26.5%; diagnoses: MCI = 5; AD = 3; mixed dementia = 1) and 9 carers (18.8%) attended the seminars, and 2/48 (4%) carers and 3/34 (8.8%) clients (diagnoses: MCI = 2; AD = 1) completed ACP. CONCLUSION: Despite initial interest, ACP completion was low. The reasons for this need to be determined. Approaches that may better meet the needs of people newly diagnosed with MCI and dementia are discussed.