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Social participation perspectives of people with cognitive problems and their care-givers: a descriptive qualitative study

Published online by Cambridge University Press:  04 March 2018

HANNEKE DONKERS ,
MYRRA VERNOOIJ-DASSEN ,
DINJA VAN DER VEEN ,
MARIA NIJHUIS VAN DER SANDEN  and
MAUD GRAFF
HANNEKE DONKERS*
Affiliation:
Radboud University Medical Center, Radboud Institute for Health Sciences, Scientific Center for Quality of Healthcare (IQ Healthcare), Nijmegen, The Netherlands. Radboud University Medical Center, Radboud Alzheimer Center, Nijmegen, The Netherlands.
MYRRA VERNOOIJ-DASSEN
Affiliation:
Radboud University Medical Center, Radboud Institute for Health Sciences, Scientific Center for Quality of Healthcare (IQ Healthcare), Nijmegen, The Netherlands. Radboud University Medical Center, Radboud Alzheimer Center, Nijmegen, The Netherlands.
DINJA VAN DER VEEN
Affiliation:
Radboud University Medical Center, Radboud Institute for Health Sciences, Scientific Center for Quality of Healthcare (IQ Healthcare), Nijmegen, The Netherlands. Radboud University Medical Center, Radboud Alzheimer Center, Nijmegen, The Netherlands.
MARIA NIJHUIS VAN DER SANDEN
Affiliation:
Radboud University Medical Center, Radboud Institute for Health Sciences, Scientific Center for Quality of Healthcare (IQ Healthcare), Nijmegen, The Netherlands. Radboud University Medical Center, Donders Institute for Brain, Cognition and Behaviour, Department of Rehabilitation, Nijmegen, The Netherlands.
MAUD GRAFF
Affiliation:
Radboud University Medical Center, Radboud Institute for Health Sciences, Scientific Center for Quality of Healthcare (IQ Healthcare), Nijmegen, The Netherlands. Radboud University Medical Center, Radboud Alzheimer Center, Nijmegen, The Netherlands. Radboud University Medical Center, Donders Institute for Brain, Cognition and Behaviour, Department of Rehabilitation, Nijmegen, The Netherlands.
*
Address for correspondence: Hanneke Donkers, Radboud University Medical Center, 114 IQ Healthcare, P.O. Box 9101, 6500 HB, Nijmegen, The Netherlands E-mail: [email protected]
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Abstract

The aim of this study is to explore how community-dwelling older people with cognitive problems and their care-givers (dyads) perceive their own social participation, how care-givers evaluate the social participation of the people they care for and what factors they perceive as influential. In this qualitative study, we performed 13 semi-structured, in-depth interviews with dyads who participated in the Social Fitness Programme. We used content analysis to analyse the interviews thematically. Social participation perceptions include changes over time and a discrepancy in perspectives. All the people with cognitive problems and most care-givers perceived a decreased social participation. Most people with cognitive problems answered that they were satisfied, in contrast to most care-givers who were dissatisfied with the decreased social participation of the people they cared for. Analysing the influencing factors resulted in five themes: behavioural, physical, social environmental, physical environmental and activity-related. People with cognitive problems and their care-givers displayed a discrepancy in social participation perspectives. This becomes a major dilemma, especially for younger care-givers. A key element is a sometimes deliberate choice of people with cognitive problems to refrain from social participation to protect themselves from the consequences of cognitive problems and from encounters with others. This highlights the dynamics of social participation as an interaction between personal factors and the social and physical environment in which social participation occurs.

Keywords

social participationsocial healthcognitive functioningcare-givingquality of life
Type
Article
Information
Ageing & Society , Volume 39 , Issue 7 , July 2019 , pp. 1485 - 1511
Copyright
Copyright © Cambridge University Press 2018 

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