Informal carers' information needs in managing behavioural and psychological symptoms of people with dementia and related mHealth applications: a systematic integrative review to inform the design of an mHealth application

Thilanka Jagoda; Samath Dharmaratne; Sarath Rathnayake

doi:10.1136/bmjopen-2022-069378

Informal carers' information needs in managing behavioural and psychological symptoms of people with dementia and related mHealth applications: a systematic integrative review to inform the design of an mHealth application

BMJ Open. 2023 May 11;13(5):e069378. doi: 10.1136/bmjopen-2022-069378.

Authors

Thilanka Jagoda^{1

2}, Samath Dharmaratne^{3

4

5}, Sarath Rathnayake⁶

Affiliations

¹ Department of Community Medicine, Faculty of Medicine, University of Peradeniya, Peradeniya, Sri Lanka thilanka@sjp.ac.lk.
² Department of Nursing and Midwifery, University of Sri Jayewardenepura, Nugegoda, Sri Lanka.
³ Department of Community Medicine, Faculty of Medicine, University of Peradeniya, Peradeniya, Sri Lanka.
⁴ Postgraduate Institute of Medical Sciences, University of Peradeniya, Peradeniya, Sri Lanka.
⁵ Institute for Health Metrics and Evaluation, Department of Health Metrics Sciences, School of Medicine University of Washington, Seattle, Washington, USA.
⁶ Department of Nursing, Faculty of Allied Health Sciences, University of Peradeniya, Peradeniya, Sri Lanka.

Abstract

Objective: To review and synthesise the evidence on informal carers' information needs in managing behavioural and psychological symptoms of dementia (BPSD) of their care recipients and related mobile health (mHealth) applications to inform the design of an mHealth application.

Design: This is a systematic integrative review guided by Whittemore and Knafl's five-stages framework. Six databases were searched: Cochrane, CINAHL, Embase, MEDLINE, ProQuest and PsycINFO. The key concepts included 'dementia', 'behavioural and psychological symptoms', 'informal carers' and ('information need' or 'mHealth application'). Peer-reviewed full-text articles published in English from 2000 to 2022 were included. The methodological rigour of studies was analysed using the Mixed Methods Appraisal Tool V.2018. Preferred Reporting Items for Systematic Reviews and Meta-Analyses-2020 reporting guidelines were followed.

Results: This review included 34 studies, including quantitative (n=13), qualitative (n=17) and mixed-method (n=4) studies. Four major themes emerged from the reported studies: the need for addressing information needs on managing BPSD, the role of support systems in managing BPSD, self-care for carers and the role of mHealth applications in providing education and support for carers. In managing BPSD, carers seek knowledge about dementia and BPSD, the roles of the carers and misconceptions about BPSD. One study reported an mHealth application to monitor the behavioural issues of people with dementia.

Conclusion: Informal carers of people with dementia face a number of challenges when providing care for BPSD of their care recipients. The lack of knowledge on managing BPSD is a significant challenge. Support systems such as professional, social, residential, legal and eHealth have a significant role in managing the BPSD of people with dementia in the community. mHealth interventions are sparse to support BPSD management. These findings can be used in designing an mHealth application that addresses needs related to managing BPSD of informal carers of people with dementia.

Prospero registration number: CRD42021238540.

Keywords: Dementia; GERIATRIC MEDICINE; Old age psychiatry.

Publication types

Systematic Review

MeSH terms

Caregivers* / psychology
Humans
Self Care
Telemedicine*