Family Caregivers’ Perceived Challenges When Caring For Family Members With Dementia And Their Expectations For Dementia Services

Objectives:1.To investigate caregiver burden structure in dementia care in China.2.To describe different types of caregiver burden and explore factors associated with each type of burden.3.To examine socially, culturally and politically constructed factors affecting family caregiver practice in dementia care.4.To identify possible changes to improve dementia care in Hunan province, China.Methods:This study used a mixed methodology design with the sequence of quantitative questionnaire survey (phase one) and qualitative semi-structured interview (phase two).1. In the phase one, cross-sectional questionnaire survey was used to address the objective one and objective two. Caregivers of people with dementia were recruited via eight major tertiary hospitals and12community care centres in Hunan province between March2012and April2013using convenience sampling. Four instruments were employed to measure caregiver burden and help analyse factors associated with different types of subjective caregiver burden,, including demographic information of caregivers and care-recipients, Caregiver Burden Inventory, Neuropsychiatric Inventory-Questionnaire and Social Support Rating Scale. Objective burden was measured by caregiving hours and dementia-related financial burden. Subjective burden was measured and analysed employing the Caregiver Burden Inventory and the Neuropsychiatric Inventory-Questionnaire. All data were exported to SPSS software, version22.0for analyses. A principal component analysis with varimax orthogonal rotation was applied to confirm the structures of caregiver burden measured by Caregiver Burden Inventory. Bivariate analysis and multivariate regression models were employed to analyse factors associated with each type of subjective burden.2. In phase two, a double hermeneutic approach informed by Giddens’Structuration Theory was used to achieve objective three and four. In-depth semi-structured interviews with family caregivers of people with dementia lasting up to90minutes were conducted from February2012to August2012. Interviews were audio-taped and transcribed verbatim for analysis. A semi-structured interview guide was developed to elicit key information and these questions focused on four areas: caregiver’s competencies; supports, resources and services caregiver received and satisfaction with these supporting mechanisms; difficulties and challenges caregivers faced; suggestions for dementia services.Results:1. Phase one-quantitative sectionOne hundred and fifty-two family caregivers participated in the cross-sectional questionnaire survey. Caregivers spent an average of127.6hours(2-168hours) per week on caring activities and up to55%of the participants showed a financial burden related to caring for the person with dementia. Six types of subjective burden were identified in the study, namely, physical burden, emotional burden, time-dependence burden, developmental burden, social burden and caregiver distress. This caregiver cohort showed a high level of physical, time-dependence, developmental burdens and caregiver distress, but a low level of emotional and social burdens. Factors contributing to each type of subjective burden differed from each other. The care recipient’s behavioural and psychological symptoms of dementia were the major factor contributing to subjective burden. The caregiver distress identified in this study was extremely high and the severity of care recipients’ behavioural and psychological symptoms of dementia contributed the most to caregiver distress2. Phase two-qualitative section Twenty-three family caregivers of people with dementia were interviewed. Analyses from qualitative data revealed three consequences of socially constructed factors in dementia care, which constrained caregiver practice. First, caregivers were unable to manage behavioural and psychological symptoms of dementia. Untreated aggressive behaviours caused harm to the person with dementia and endangered the caregiver and the public. Second, the burden on the primary caregiver was evident and caregivers received limited support. Third, there was little coordination between primary and specialist care services for people with dementia. Informal social support including family support and support from personal social network such as friends or colleagues was the only resource in crisis. On critical reflection of potential changes that could improve dementia services, caregivers suggested that community care centres have a leading role in coordinating dementia services and supporting caregivers.Conclusion:1. The present study confirmed the multiple dimensions of subjective burden reported in previous studies and explored the factors contributing to each dimension of subjective burden. Six types of subjective burden were investigated and factors contributing to different types of subjective burden differed from each other. Objective burden including hours spent on caring activities per week and financial burden related to caring for people with dementia in this sample were much more intensive that those reported by their counterparts in developed countries and regions.2. The prevalence of behavioural and psychological symptoms of dementia was up to99%, which is much higher than the estimated rates reported by similar studies in developed countries or regions. Behavioural and psychological symptoms of dementia are the leading factor contributing to subjective burden and individual symptom revealed different impacts on caregiver burden. The high level of objective and subjective burdens identified in the quantitative results and the overwhelming challenges caregivers perceived in dementia care from the qualitative findings suggest that relying on family caregivers to care for people with dementia without prevision of dementia services by the public healthcare system generated negative health outcomes for both caregivers and care recipients. Government-funded formal caregiver support should be established and grounded on research evidence taking account of Chinese cultural values.3. The burden on the primary family caregiver is evident and the family caregivers received limited support within and outside the family.4. There is little coordinated treatment for the person with dementia or support for caregivers in the healthcare and social security system in China. Community Care Centres and community nurses are in an ideal position to develop and lead consumer-directed dementia services including primary care, education and coaching, but require government policies and resources to support workforce development and improve the nurse status in these settings.