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

ACCESS DATA

Similar Datasets

Project description:BackgroundInformal carers face difficulties and challenges when dealing with the behavioural and psychological symptoms of dementia (BPSD) of their family members or friends residing at home. Mobile health (mHealth) applications are promising for educating and supporting carers. However, needs analysis studies have not been conducted in Sri Lanka to develop mHealth applications for informal carers of people with dementia.AimsTo explore the needs to design an mHealth application for informal carers of people with dementia concerning the management of BPSD.MethodAn exploratory cross-sectional survey was conducted among a convenience sample (N = 203) of informal carers as a part of developing an mHealth application. Family members, relatives, or friends who lived with people with dementia and provided care on an unpaid basis for more than three months were included. The questionnaire included sociodemographic data, carer-rated prevalence and severity of BPSD, and informal carers' knowledge of dementia, carer burden, information-seeking sources, availability of smartphones, mHealth information seeking and perception of mHealth information seeking related to managing BPSD. Descriptive analysis and inferential tests were performed.ResultsInformal carers of people with dementia were predominantly female (70.4%), and 64% showed low knowledge of dementia. Of the participants, 35% reported a high carer burden, 53.7% reported a low burden, and only 11.3% reported no carer burden. Most of their care recipients (97%) had at least one BPSD. The prevalence and severity of BPSD were significantly and positively correlated with the carer burden. The participants' main source of information was health professionals. Most of them owned smartphones (63.5%), but none used mHealth applications for dementia-related information seeking. Approximately half of the respondents were ready to spend time (52.7%) and money (46.8%) on mHealth information seeking. Perceived mHealth usefulness was significantly associated with dementia knowledge, smartphone ownership, and readiness to spend time and money on mHealth information seeking.ConclusionInformal carers of people with dementia were affected by BPSD in their care recipients. This study explored carers' educational needs concerning dementia, BPSD, and carer burden. Informal carers could adapt mHealth for dementia-related information seeking. Their unmet needs in managing BPSD should be explored.

Project description:In the context of rising dementia prevalence, the workload of general practitioners (GPs) in dementia care is set to increase. However, there are many aspects of dementia care that GPs find challenging. Behavioural and psychological symptoms of dementia (BPSD) affect the majority of people with dementia and is an aspect of dementia care that GPs find particularly difficult to manage. The aim of this mixed methods systematic review is to undertake a synthesis of qualitative and quantitative studies on GPs' knowledge, attitudes and experiences of managing BPSD.Seven electronic bibliographic databases will be searched from inception to present. All qualitative or quantitative studies that explore the knowledge, attitude or experiences of GPs towards the management of BPSD in community and/or residential settings will be eligible for inclusion. A meta-ethnography will be conducted to synthesise included studies. Primary outcome measures will include GPs' experiences of managing BPSD, GPs' knowledge of BPSD and their attitude to different approaches to the management of BPSD, in particular their attitude to non-pharmacological approaches. All included papers will be independently assessed for methodological validity by two reviewers using the following tools: the Joanna Briggs Institute checklist for qualitative research, the Effective Public Health Practice Project (EPHPP) tool for intervention studies and the National Institute of Health (NIH) quality assessment tool for observational and analytical cross-sectional studies. As there is no agreed quality assessment tool for descriptive cross-sectional studies, an original tool will be developed. Two independent reviewers will apply the Confidence in the Evidence from Reviews of Qualitative Research (CERQual) tool to the review findings. The results will be reported in line with the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) statement.This study will be the first systematic review that synthesises the existing literature of GPs' knowledge, attitudes and experiences of managing BPSD in community and residential care. This review will improve our understanding of GPs' perspectives on the management of BPSD, and the results will be used to inform the development of an intervention to improve the management of BPSD in general practice.PROSPERO CRD42017054916 .