gms | German Medical Science

Background and Purpose: In recent years, Advance Care Planning (ACP) has gained in importance in Germany and may be considered as a new framework for a valid advance directive system. However in Germany it is still an under-researched area.

The importance of the discussion process with ACP is exponentially raised with a dementia diagnosis, not only for the person diagnosed but also for their family and the caretakers. Due to the peculiarities of dementia, it is needed to modify the instrument of ACP.

Methods: The focus of the main study is to interview people in the course of their disease to identify a shifting in values and changes in their specific life issues. Therefore qualitative semi-structured and expert interviews will be conducted and analysed with the Grounded Theory.

Research Focus: The proposed study design is a longitudinal and cross-sectional cohort study. Regarding people with dementia, the german documents of ACP were detected as incompatible.

The first aim of this project was to modify an often-used questionnaire (value anamnesis) about personal values and the attitude towards life, severe illness and dying. The final version of this questionnaire was created in the course of different expert interviews (n=20) and in the last step with the people with dementia themselves. This pilot study was four guided interviews with people in early stage of dementia.

The aim of the main study is to highlight changes, adjustments or shifting of personal values throughout the life course of a person with dementia. The sample size is 10–15 interviews with a follow up phase of six to eight month after the first interview. The interviews take place at the people’s home. The different stages of dementia offer the possibility for a cross-sectional investigation.

Methodological and Theoretical Focus: A qualitative approach is evident in this under-researched area exploring subjective experiences of persons concerns. The data helps to generate theories in the field of dementia and future work with ACP.

The theoretical background of the study draws from philosophical and ethical discussions about autonomy, death and dying, values and attitudes.

Results: The study is based on the assumption that the fundamental values remain stable, but at the same time, changes in specific life issues will occur. Therefore, a fundamental change is crucial for those who wish to embark upon this path.

First interviews of the main study will start in December 2017, due to this fact only first tendencies can be presented. However, a possible modification of the value anamnesis will be exemplified in the lecture.

Conclusions: This contribution focuses on ACP and dementia and conducts the research with a longitudinal cohort study by highlighting the possible shifting of values in the course of a dementia.

The goal of this research is to develop treatment and care recommendation for the ACP-process including life-prolonging measures for people with dementia. This has important practical implications for nursing and care.

Programme Overview:

1.

Overview and Background

2.

Study design

3.

First results

4.

First recommendations for practical use

5.

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