How do health care professionals support decisions in everyday activities for persons with dementia? An explorative qualitative study.

Elise Cornelis, Ruben Vanbosseghem , Valerie Desmet , Dominique Van de Velde , Patricia De Vriendt

Research output: Contribution to journalMeeting abstract (Journal)

Abstract

Purpose:
Making decisions about daily life determines a person’s well-being and quality of life, also for persons with dementia (PwD). Although decision making ability gradually declines in dementia, it is not justified to think that PwD are incapable of making decisions. This study aimed to explore how PwD take decisions in everyday activities and how this is supported by health care professionals (HCP).

Methods:
Eight focus groups were conducted with 64 HCP working in nursing homes and community care facilities. Data were coded open-minded and clustered in categories by using a constant comparative method. Categories were checked in literature and discussed by peer-debriefing.

Results:
As described in literature, we distinguished: “autonomous decisions”, “shared decisions”, “delegated decisions” and “pseudo-autonomous decisions” (HCP assumed to know the preferences of the PwD and made decisions on this without consulting the person). Additionally, this study identified “supported-autonomous decisions” or “interpreted decisions”. In some cases, PwD were not involved in decisions at all. However, HCP supported decision making in various ways; assisting comprehension, stating options in a clear manner or consulting family and informal caregivers. Nevertheless, offering support is often experienced as difficult and not always possible because of lack of time and dementia-related factors.

Conclusions:
Despite many efforts, not all decisions of a PwD are taken autonomous or shared. HCP need to be aware of “pseudo-autonomous decisions” or decisions made without involving PwD. Making HCP aware of the different ways to support decisions may be helpful to improve communication with PwD about everyday activities.
Original languageEnglish
Pages (from-to)31 - 58
JournalTijdschrift voor Gerontologie en Geriatrie
Volume48
Issue number1
Publication statusPublished - 2017
EventBVGG-SBGG 40ste Wintermeeting - Kursaal, Ostend, Belgium
Duration: 17 Feb 201718 Feb 2017

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