What is proactive care planning in dementia?

A commonly cited definition of proactive care planning ("advance  care planning") is only for people with mental "capacity;" people who are able to make decisions about treatments and care. With this definition, it remains unclear how to proceed if capacity declines.

Thus, for people with dementia with declining, often fluctuating capacity, there was no applicable definition yet. Although some people with dementia who participate in working groups do not want to be "special," the taskforce for the European Association for Palliative Care , have nevertheless, with a panel of experts (including 71% with personal experience with a loved one with dementia) defined proactive care planning especially for people with dementia. It doesn't stop with disability but continues with input from the person as long as possible, and then continues with loved ones.

Furthermore, the taskforce visualized what is special in dementia: capacity, engagement and communication, and family (next of kin). The figure shows that the role in proactive care planning fluctuates and diminishes, but ideally, some form of involvement remains. Next of kin, if present, are given a larger role. Capacity, however, is a legal concept where it is all or nothing. Featured in the November issue of Alzheimer's & Dementia, the scientific journal of the American Alzheimer's Society. Next is providing recommendations for clinical practice, policy and future research based on this definitional framework of proactive or advanced care planning in dementia.

See more by watching the memory clinic webinar of 12 October (in Dutch).