Qualitative Evaluation of Advanced Care Planning in Early Dementia (ACP-ED)

Abstract

BackgroundEnd-of-life-care is often poor in individuals with dementia. Advanced care planning (ACP) has the potential to improve end-of-life care in dementia. Commonly ACP is completed in the last six months of life but in dementia there may be problems with this as decision-making capacity and ability to communicate necessarily decrease as the disease progresses. Choosing the right time to discuss ACP with people with dementia may be challenging given the duration of the illness may be up to nine years.AimsTo explore the acceptability of discussing ACP with people with memory problems and mild dementia shortly after diagnosis.MethodsIn-depth interviews were conducted with 12 patients and eight carers who had participated in ACP discussions and six staff members from a memory clinic and a community mental health team who had either conducted or attended the discussions for training purposes.ResultsPatients and carers found ACP a positive intervention that helped them think about the future, enabled people with dementia to make their wishes known, and resulted in their feeling relieved and less worried about the future. The importance of sharing the ACP documentation between health service providers was highlighted.ConclusionsThis qualitative evaluation of ACP in early dementia has encouragingly positive results which support the wider application of the intervention in memory services and community mental health teams. Strategies are suggested to support the implementation of ACP further in clinical practice.

An introduction to advance care planning in practice

“…17 However, data on the best timing of advance care planning discussions in patients with dementia are conflicting. One recent qualitative study suggested that patients with mild dementia find such discussions acceptable, 42 but another found that people with dementia had difficulty considering their future selves. 35 More generally, some studies have identified particular triggers for initiating these conversations, such as recurrence of cancer.…”

The role of the memory service in helping carers to prepare for end of life: A mixed methods study

“…Staff confidence or lack of confidence was also identified as a key factor, but for brevity, we have not described this theme as it is well documented in the literature. 16,21,22…”

Patientenverfügung bei Menschen mit Demenz

“…Angehörige können sich auf den zu erwartenden Verlauf einstellen, einer Überforderung kann ein Stück weit vorgebeugt werden und die Wahrscheinlichkeit des Einforderns nicht mehr sinnvoller therapeutischer Maß-nahmen sinkt bei gleichzeitig besserer palliativer Versorgung der Patienten im Spätstadium. Der Tod des Patienten wird trotz der schweren Erkrankung häu ger als ein guter empfunden, wenn auf die skizzierte Weise Vorsorge betrieben worden ist [8,22,24,25,26,27].…”