Adult Children as Caregivers: Preliminary Study on the Experiences and Coping Strategies of Adult Children as Primary Caregivers of Parents with Alzheimer’s Disease in Malaysia

Alzheimer’s Disease (AD) is an irreversible brain disorder that affects thinking, memory, reasoning, and daily functioning. According to World Health Organization (2020), there are approximately 50 million people diagnosed with AD, and nearly 60% of them are living in low- and middle-income countries. In Malaysia, the prevalence of dementia is 8.5% among older adults aged 60 and above. Listed as one of the leading causes of death in 2020, curbing AD is not only a burden to the public health system but also brings perpetual stress to the family members who often undertake the primary caregiving role. The research has indicated that adult children as AD patients' primary caregivers (adult-child caregivers) experience higher psychological burdens than other caregiver groups. This qualitative study intended to explore the experiences and coping strategies of adult children as the primary caregivers of AD patients in Malaysia. The recruitment was conducted with the assistance of the Alzheimer’s Disease Foundation Malaysia, whereby eight participants took part in the in-depth interviews. Both face-to-face and telephone interviews were conducted to facilitate the full engagement of the participants in the research. Thematic analysis technique was used to analyze the data. The results showed that, at the personal level, adult children constantly felt emotional burnout, as they were overwhelmed by not knowing how to manage the stress they experienced. The findings reflected that caregiving for parents with AD involves a process that was depicted as the discovery of behavior changes, having difficulties accepting the diagnosis, making an adjustment to the role of a caregiver, and finally accepting their function and the reality of the disease. Recommendations for interventions and further research have been discussed.