Gerontology

Dr. Henrike Voß - Gerontologist M.A.
Network Aging Research
Bergheimer Straße 20
D-69115 Heidelberg

Phone: +49 (0)6221 54 8109
henrikevoss(at)gmx.de
https://www.gero.uni-heidelberg.de/personen/voss.html
Fellow: Prof. Dr. Andreas Kruse

In which Ways Are People with Dementia Attached to Life?
– A New Perspective on Advance Care Planning –

Background and Purpose
In recent years, Advance Care Planning (ACP) has gained in importance in Germany and may be considered as an extended and valid advance directive system. With a dementia diagnosis the importance of the discussion process through ACP increases exponentially, not only for the person diagnosed but also for their family and caretakers. In Germany, ACP is an under-researched area and there is even less research on ACP in connection with people with dementia.

Methods and Research Focus
German ACP-documents were detected as being incompatible with persons affected by dementia. The first aim of this study was to modify an often-used questionnaire (value anamnesis) about personal values and attitudes towards life, severe illness, death and dying. The final version of this questionnaire was created in the course of various expert interviews (n=20) and ultimately with persons affected by dementia.
The aim of the main study is to highlight how people with dementia are attached to life and how these characteristics of this attachment interfere with Advance Care Planning. Thus the main study focusses on interviews with persons affected by dementia in order to identify characteristics in which ways they are attached to life.
The proposed study design is a longitudinal and cross-sectional cohort study during which semi-structured expert interviews are conducted. The qualitative analysis of the interviews will be carried out by means of Qualitative Content Analysis (Kuckartz). The sample size is 12 interviews with a follow-up phase of six to eight months after the first interview. The interviews take place at the affected persons’ homes. The different stages in the dementia of the interviewees offer the possibility of a cross-sectional investigation.

Methodical and theoretical focus
A qualitative approach is the obvious choice in this under-researched area. The data help to generate theories in the field of dementia and in dealing with ACP in the future. The theoretical background of the study is based on philosophical and ethical discussions about autonomy, death and dying, values and attitudes.

Expected Results and Conclusion
The goal of this research is to develop treatment and care recommendation for the advance care planning process including life-prolonging measures for people with dementia. There are only few studies in Germany, which plays special focus on dementia in conjunction with ACP. Nursing and care need to respond to both topics. Therefore, a fundamental change is crucial for those who wish to embark upon this path.

Publications

• Voß, Henrike (2015). Körperliche Aktivität im Pflegealltag – Pflegende Angehörige von Menschen mit Demenz im Fokus. B&G Bewegungstherapie und Gesundheitssport, Heft 31, S. 156-160
• Voß, Henrike (2014). Theaterpädagogik. Lebenserfahrung auf die Bühne bringen. ProAlter, Heft 1, S. 42-43

Awards

• Study award for the bachelor thesis with the topic “dementia as a secondary diagnosis– people with dementia in acute hospitals”, Catholic University of Applied Sciences Freiburg in cooperation with the institute of the St. Josephshaus Herten, 10/2012

Vita