Globally, there are nearly 50 million persons living with dementia, and a new case is diagnosed every three seconds.1 Dementia is one of the diseases with high care costs, and 85% of these costs are related to home or social care.2 In the United States, there are an estimated 15.5 million family caregivers who spend 18 billion hours on providing informal care on an average of 92 hours a month, for an overall cost exceeding US$220 billion.3 In Taiwan, more than 90% of persons living with dementia live at home and are cared for by their families. The yearly total cost of dementia care in Taiwan is about US$6.99 billion, of which medical costs are about US$412 million, non-medical costs are about US$3.34 billion, and the cost of informal care is approximately US$3.25 billion.4 Family caregivers are an essential component of dementia care, and their health and well-being need to be addressed.5

Caregiving for a family member with dementia is challenging as family caregivers attempt to meet the needs of persons living with dementia as well as meeting the demands of family and personal needs. In addition, as the disease progresses, persons living with dementia experience a decline in cognitive level and ability to perform activities of daily living, and an increase in psychological and behavioral symptoms, which is accompanied by an increase in caregiving burden, stress, and depression for family caregivers.6,7,8 Previous studies on family caregivers of persons living with dementia have mostly focused on family caregivers’ depression,9 caregiver burden,10,11 and stress12 with little attention paid to the positive aspects of the caregiving experience. However, a few studies have reported on positive gains from the hardships and difficulties experienced by family caregivers caring for persons living with dementia.13,14 These experiences also have been demonstrated to increase family caregivers’ confidence in taking control of caregiving situations.3,13,15,16,17 The positive aspects of caregiving experiences (PACE) can help family caregivers better manage psycho-behavioral symptoms of persons living with dementia, thus reducing perceptions of caregiver burden, depression, improving their perceived health, and thereby providing a better quality of care for persons living with dementia.15,18

Previous studies have suggested that several factors can influence PACE. A qualitative study of family caregivers in Turkey reported that although they experienced caregiver burden, caregiving for parents with Alzheimer's disease was a positive experience.19 Caregivers who are married, have religious beliefs, and are spousal caregivers were found to have higher scores for measures of PACE.16,20 Caregivers who spend a shorter duration of time on providing care have higher PACE scores compared with those with long durations of caregiving.16,20 The better the caregiver's perceived physical or mental health, the lower the caregiving burden and the greater the PACE score.13 However, a study by Quinn and Toms8 found the subjective perception of health status was not related to the PACE. The more serious the care recipient's psychological behaviors and memory problems, the lower the caregiver's PACE score.20

Social support has also been suggested to be associated with PACE.16,21 However, most studies have focused on informal social support or the subjective perception of social support16,21,22 rather than exploring the association between formal social support and PACE. Caregivers’ positive experience requires informal support from relatives and friends, as well as formal support and quality caregiving counseling, which are also considered important factors in enhancing caregivers’ positive experience.23 Family caregivers with formal training have higher levels of positive experiences.5

In Eastern cultures, caring for parents or family members is believed to be the responsibility of the next generation; fulfilling the duty of filial piety through providing personal and family care is in line with social expectations. Therefore, families, relatives, and friends are often the first choice of caregivers,5,24 and Taiwan is no exception. Taiwan's Ministry of Health and Welfare4 recognized the need for family caregiving when it formulated the Dementia Prevention and Care Policy and Action Plan 2.0 based on the Global Action Plan on Public Response to Dementia 2018–2025 published by the World Health Organization.25 Furthermore, Taiwan's National Ten-Year Long-Term Care Plan 2.0 (also known as the Long-Term Care Plan 2.0) outlined the addition of resources for dementia care, such as the establishment of Integrated Dementia Care Centers and Support Centers for People with Dementia and their Families, to provide more community care programs and professional services to share the caregivers’ workload. However, it is unclear whether these formal social supports have an impact on family caregivers’ PACE. The long-term care needs of persons living with dementia are growing, and the corresponding social welfare policies vary from country to country. Evaluations of the effects of formal social support and the subjective perception of social support on family caregivers’ PACE can help develop a more appropriate dementia care model.

Therefore, the objective of this study was to evaluate the current level of PACE and social support among primary family caregivers of persons living with dementia and to identify predictors of PACE. The results of this study are expected to help enhance the positive experience of primary family caregivers of persons living with dementia and provide a reference for implementation of subsequent interventions and social welfare policy revisions. We hypothesized that (1) social support, including formal social support and the subjective perception of social support would be significantly positively correlated with PACE and (2) controlling for covariates, formal social support and the subjective perception of social support would be significant predictors of PACE.