Publicatie: Mantelzorg en dementie

FOTO DOOR VLADA KARPOVICH
In dit onderzoek staat het perspectief centraal van partners en familieleden van thuiswonende mensen met dementie. Hoe geven zij hun dagelijks leven vorm, en hoe ervaren zij dit binnen de context van mantelzorg?

Vijftien mensen namen deel aan interviews. De voorlopige bevindingen zijn besproken in een focusgroep. De analyse leidde tot vier afzonderlijke, maar onderling verbonden thema’s:
1. Het vinden en vasthouden van routines die werken
2. Aandacht voor kleine momenten
3. Het steeds opnieuw in balans brengen van relaties
4. Vooruitdenken

Het artikel levert een bijdrage aan het herpositioneren van de ervaring van leven met dementie in het dagelijks leven. Voor familieleden vraagt dit om voortdurende afstemming en aanpassing. De vier thema’s bieden aanknopingspunten voor persoons- en relatiegerichte ondersteuning van partners en familieleden.

Abstract

In the Netherlands, where this study was conducted, there are around 800,000 family carers of people with dementia. Research into the needs and priorities of people with dementia and their family carers is crucial for developing tailored care and meaningful support. However, current research lacks attention to the everyday life experiences of caring for someone with dementia at home. Therefore, the research question this study aimed to address was: how do family carers of people with dementia living at home approach and experience their everyday life in a caring context? The study used a qualitative design, underpinned by a phenomenological approach. 15 family carers (10 partners and five adult children) participated in open interviews. Thematic analysis was used to document and structure the data. A member check was performed on the emergent findings through a focus group with six family carers (all care partners). This process resulted in four discrete but interlinked themes that reflected how family carers approach and experience caring at home for a person with dementia, namely: (1) Finding and keeping routines that work; (2) Focussing on small moments; (3) Rebalancing connections; and (4) Thinking ahead. These themes also emphasise the unfolding nature of everyday life that is constantly changing for family carers.

 

Keywords
everyday lifefamily carerspsychosocialdementianeighbourhoodcitizenship

1Research Center Social Innovation, HU University of Applied Sciences Utrecht, The Netherlands
2Department of Tranzo, School of Social and Behavioral Sciences, Tilburg University, The Netherlands
3Research Center Healthy & Sustainable Living, HU University of Applied Sciences Utrecht, The Netherlands
4Department Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, The Netherlands
5Division of Nursing, Midwifery and Social Work/Greater Manchester Mental Health NHS Foundation Trust, The University of Manchester, UK
6HIVA—Research Institute for Work and Society, Faculty of Social Sciences, University of Leuven, Belgium

 

Corresponding author(s):
Jacoba Huizenga, Research Center Social Innovation, HU University of Applied Sciences Utrecht, Postbus 85397, Utrecht 3508, Netherlands. Email: jacoba.huizenga@hu.nl
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