Henrike Voß1, Andreas Kruse2. 1. Netzwerk für Alternsforschung (NAR), Universität Heidelberg, Bergheimer Str. 20, 69115, Heidelberg, Deutschland. voss@nar.uni-heidelberg.de. 2. Institut für Gerontologie, Universität Heidelberg, Heidelberg, Deutschland.
Abstract
BACKGROUND: 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 a discussion increases exponentially when dementia is diagnosed, not only for the person affected but also for their relatives and other caregivers and companions. OBJECTIVE: With respect to people with dementia, documents by a prominent German ACP provider were assessed as being insufficient by the authors. The aim of the pilot study presented here was to modify a questionnaire (value anamnesis) frequently used in the national context in order to apply it to this vulnerable group. MATERIAL AND METHODS: 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. RESULTS AND CONCLUSION: The stepwise adaptation of the document has created a practicable 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 a basis document for the subsequent main study: here the life attachment of people with dementia is explored and thus a new perspective is placed on ACP.
BACKGROUND: 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 a discussion increases exponentially when dementia is diagnosed, not only for the person affected but also for their relatives and other caregivers and companions. OBJECTIVE: With respect to people with dementia, documents by a prominent German ACP provider were assessed as being insufficient by the authors. The aim of the pilot study presented here was to modify a questionnaire (value anamnesis) frequently used in the national context in order to apply it to this vulnerable group. MATERIAL AND METHODS: 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. RESULTS AND CONCLUSION: The stepwise adaptation of the document has created a practicable 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 a basis document for the subsequent main study: here the life attachment of people with dementia is explored and thus a new perspective is placed on ACP.
Entities:
Keywords:
Adaptation; Advance care planning; Attitudes; Low threshold; Questionnaires
Authors: Rebecca L Sudore; Hillary D Lum; John J You; Laura C Hanson; Diane E Meier; Steven Z Pantilat; Daniel D Matlock; Judith A C Rietjens; Ida J Korfage; Christine S Ritchie; Jean S Kutner; Joan M Teno; Judy Thomas; Ryan D McMahan; Daren K Heyland Journal: J Pain Symptom Manage Date: 2017-01-03 Impact factor: 3.612
Authors: Judith A C Rietjens; Rebecca L Sudore; Michael Connolly; Johannes J van Delden; Margaret A Drickamer; Mirjam Droger; Agnes van der Heide; Daren K Heyland; Dirk Houttekier; Daisy J A Janssen; Luciano Orsi; Sheila Payne; Jane Seymour; Ralf J Jox; Ida J Korfage Journal: Lancet Oncol Date: 2017-09 Impact factor: 41.316