Advance care planning (ACP) in the context of dementia : Development of an instrument for exploration of perspectives of affected persons

Abstract

Since 2015, the Hospice and Palliative Care Act has defined the entitlement of nursing home residents to preventive planning in the final phase of their lives. Nevertheless, the advance care planning (ACP) concept has not yet been sufficiently researched in Germany. The deficient evidence on this topic appears to be even more considerable in connection with dementia. The necessity of such adiscussion increases exponentially when dementia is diagnosed, not only for the person affected but also for their relatives and other caregivers and companions. With respect to people with dementia, documents by aprominent German ACP provider were assessed as being insufficient by the authors. The aim of the pilot study presented here was to modify aquestionnaire (value anamnesis) frequently used in the national context in order to apply it to this vulnerable group. The value anamnesis was modified in 11 steps and pre-tested on people with dementia in an early stage. The focus of the document is on attitudes towards life, death and life-prolonging measures. The modification process was carried out in an iterative process based on the grounded theory according to Strauss and Corbin. The stepwise adaptation of the document has created apracticable and low-threshold approach that also enables the vulnerable group of people with dementia to comprehensively deal with existential issues and to exchange views on them. This catalogue of questions is used as abasis document for the subsequent main study: here the life attachment of people with dementia is explored and thus anew perspective is placed on ACP.