Dataset Information

Exploring dementia family carers' self-initiated strategies in managing behavioural and psychological symptoms in dementia: a qualitative study.

ABSTRACT:

Objectives

Carer's self-initiated management strategies of behavioural and psychological symptoms of dementia (BPSD) can inform intervention development. These strategies are affected by cultural values. Little is known about non-Western dementia carers' BPSD management strategies. This study aimed to explore self-initiated strategies in managing BPSD adopted by Chinese carers.

Design

Qualitative study using thematic framework method.

Setting

Community setting in Hong Kong.

Participants

16 dementia carers with purposive sampling to include carers of different relationships to the people living with dementia (PLwD), education level and living arrangement.

Results

Six overarching themes emerged from the data: (1) maintaining personhood in PLwD, (2) responding positively to BPSD, (3) explanation and bargaining, (4) responding negatively to BPSD, (5) controlling upsetting thoughts, and (6) getting respite care. Chinese carers treasured warm and supportive family relationships. They identified and minimised triggers to alleviate BPSD. Some carers struggled with care tasks and reacted with confrontation and avoidance. Changing attitudes and getting social and emotional support were described to manage carers' distress. Few self-care strategies including getting respite care were reported.

Conclusions

Carers' self-initiated strategies largely aligned with existing theoretical frameworks in BPSD management, such as person-centred approach, and echoed Asian culture, which advocates filial piety and supportive family relationships. While these cultural values encourage the engagement of people living with dementia in the normal process of family life, they may also prevent carers from taking time away from care. Interventions could support carers by enhancing their knowledge and skills in managing BPSD, providing social and emotional support, and providing guidance in self-care. Future cross-cultural research could explore factors contributing to how carers manage BPSD and how interventions could be culturally adapted to facilitate carers to apply learnt skills in daily practice and hence benefit the people living with dementia and carer population.

SUBMITTER: Leung DKY

PROVIDER: S-EPMC8388289 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:ObjectiveTo 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.DesignThis 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.ResultsThis 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.ConclusionInformal 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 numberCRD42021238540.

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