What are best practices for involving family caregivers in interventions aimed at responsive behaviour stemming from unmet needs of people with dementia in nursing homes: a scoping review

Petra E M Tasseron-Dries; Hanneke J A Smaling; Miharu Nakanishi; Wilco P Achterberg; Jenny T van der Steen

doi:10.1136/bmjopen-2023-071804

What are best practices for involving family caregivers in interventions aimed at responsive behaviour stemming from unmet needs of people with dementia in nursing homes: a scoping review

BMJ Open. 2023 Dec 7;13(12):e071804. doi: 10.1136/bmjopen-2023-071804.

Authors

Petra E M Tasseron-Dries^{1

2

3}, Hanneke J A Smaling^{4

3}, Miharu Nakanishi^{4

5}, Wilco P Achterberg^{4

3}, Jenny T van der Steen^{4

6}

Affiliations

¹ Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, The Netherlands p.e.m.tasseron@lumc.nl.
² Stichting Warande (Nursing Home Organization), Zeist, The Netherlands.
³ University Network of the Care Sector South Holland, Leiden University Medical Center, Leiden, The Netherlands.
⁴ Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, The Netherlands.
⁵ Tohoku University Graduate School of Medicine, Sendai, Miyagi, Japan.
⁶ Primary and Community Care, and Radboudumc Alzheimer Center, Radboud university medical center, Nijmegen, The Netherlands.

Abstract

Objectives: This study aimed to determine best practices for involving family caregivers in interventions aimed at preventing and reducing responsive behaviour stemming from unmet needs, including pain.

Design: Scoping review, reported according to the Preferred Reporting Items for Systematic Reviews, Meta-Analyses extension for Scoping Reviews reporting guideline.

Data sources: PubMed, Embase, Emcare, Web of Science, COCHRANE Library, PsycINFO, Academic Search Premier and Cinahl searched up to 23 July 2023.

Eligibility criteria: Studies reporting on family involvement in interventions for nursing home residents with dementia were included.

Data extraction and synthesis: Two researchers independently extracted the data, followed by a content analysis.

Results: Of the 1486 records screened, 20 studies were included. Family caregivers were involved in interventions aimed at planning care, life review (eg, documentation of life experiences of their relative), and selecting activities for their relative. Family caregivers preferred an active role in developing optimal care for their relative. Drivers of success and barriers to family involvement centred around three themes: (1) communication between all involved; (2) prerequisites (organisational and other conditions) and (3) personal circumstances (family's coping and skills).

Conclusion: Best practices for involving family caregivers in interventions aimed at addressing responsive behaviour in residents with dementia concerned those interventions in which family caregivers were given an important role in managing responsive behaviour. This means that, in order to achieve an active role of family caregivers in the whole care process, their needs must be taken into account.

Trial registration number: The protocol of the review was regisered at OSF; https://osf.io/twcfq.

Keywords: Dementia; PALLIATIVE CARE; QUALITATIVE RESEARCH; Quality of Life.

Publication types

Systematic Review
Review
Research Support, Non-U.S. Gov't

MeSH terms

Caregivers*
Communication
Dementia* / therapy
Humans
Nursing Homes