Lived experience of decision making of people living with dementia and family caregivers in Thailand
The prevalence of dementia in Thailand is rising. In 2015, it was estimated that there were 600,000 people with a diagnosis of dementia, and the number of people with dementia is expected to reach approximately 1.2 million in 2030 (ADI 2014). Being diagnosed with dementia does not automatically imply that the individuals lack all decision-making capacity, there are ways of including them in everyday decisions that affect them. Such decisions provide a great opportunity for people with dementia to maintain their autonomy and express their preferences, which in turn leads to an improved quality of life. PURPOSE: This study aims to investigate the experiences of people living with dementia and their family caregivers by taking different perspectives on how they make everyday decisions and manage the difficult choices they face in daily life. METHODOLOGY: A qualitative approach applying Interpretive Phenomenology Analysis (IPA) was adopted. Eight dyads (i.e. eight people living with dementia and their primary family caregivers) were purposively recruited through the primary care clinic of a hospital in Thailand. This study employed semi-structured interviews and observations to gain deeper insights into how the participants make daily decisions. Where possible, they were interviewed on three separate occasions, at fortnightly intervals. Participant observations were conducted on two occasions to understand their experiences of their daily activities. Data were gathered at convenient places chosen by the participants. The option of having joint or individual interviews was given. In total, data were collected in 29 interviews and two periods (1-2 hrs) of observation. Each interview was digitally recorded, and the data from the interviews and observations were analysed in their original language using Nvivo. THE FINDINGS: The findings reveal that the value of familial responsibility reinforces the expectation of filial care from children. This obligation is embodied in the cultural norm of filial piety, resulting in conflict avoidance and a good, harmonious relationship between children and their elderly parents. However, a close relationship between people living with dementia and their family caregivers can contribute to diminished personhood for the people living with dementia. Their caregivers tend to take over decision making when it comes to important choices, possibly because safety for them always trumps autonomy. Caregivers tended to weigh the risks and benefits of decisions before choosing what people with dementia can decide about their daily lives. The challenge for the caregiver is to identify high-risk activities for the person living with dementia and negotiate with that person about which activities are appropriate for them. Providing the opportunity to be involved in decision making can foster a positive attitude in people with dementia. The participants were involved in decision making with other family members. They had also established agreements about performing routine activities, since someone living with dementia could still carry out such activities and make decisions. The decision making process for people with dementia is shaped by the previous experiences and situations that the caregivers have encountered. CONCLUSION: Overall, the findings of this study have significant implications for understanding how people living with dementia and their family caregivers handle everyday decision making in Thailand. Filial obligation is an embedded cultural norm. This core value influences how children care for a parent living with dementia, and informs their decisions. People living with dementia also expect their children to take responsibility for supporting them, and they feel safe and secure when their children care for them. The findings of this study could facilitate a better understanding of the lived experience of decision making, which in turn may help health and care professionals develop an effective intervention to enhance dyadic well-being and improve the quality of life in long-term care.