This week’s blog is written by Dr Natthawut Suriya, lecturer at Srimahasrakham Nursing College, Faculty of Nursing, Praboromarajchanok Institute, Thailand.

Introduction

Making everyday decisions is crucial for people with dementia and their family caregivers. Decision-making allows individuals with dementia to maintain their autonomy and self-identity. However, family caregivers often struggle to balance respecting this independence while ensuring safety and well-being. This challenge is particularly pronounced in Thailand, where filial piety—deep-rooted respect and duty towards parents—shapes caregiving practices (Wongsawang et al., 2020).

Understanding Decision-Making in Dementia Care

People living with dementia often retain the ability to express opinions and preferences, yet their voices can be overshadowed by well-meaning but overprotective caregivers. Family members, especially adult children, frequently take on the responsibility of making decisions for their aging parents, sometimes without consulting them. This dynamic can lead to a loss of personal agency for the person with dementia, even when they are still capable of contributing to decisions about their daily lives (Chaudhry et al., 2021).

Findings from Research in Thailand

A recent study explored the lived experiences of eight dyads—people with dementia and their family caregivers—who were receiving care at a hospital clinic in Thailand. Observations and interviews conducted between February and July 2018 revealed key insights:

• Filial Piety and Caregiving: Thai adult children see caring for their parents as a fundamental duty. This cultural value ensures that older adults receive dedicated care but also means that decision-making often shifts entirely to the caregivers (Limpawattana et al., 2021).
• A Willing Acceptance: Many older adults with dementia appeared comfortable with their children taking charge of decisions, reinforcing the idea that they trust their family’s choices.
• The Burden of Care: While caregiving is an act of love, some adult children experience stress and exhaustion, especially when making all decisions alone. Over time, this burden can impact their own well-being and the quality of care they provide (Suphanchaimat et al., 2022).

Challenges in Caregiving and Decision-Making

In many cases, caregivers struggle with determining the best course of action. The progressive nature of dementia means that the ability of individuals to participate in decision-making diminishes over time. Families often experience guilt and distress when they feel forced to make choices that contradict the expressed wishes of their loved ones. Health professionals can provide guidance on legal and ethical decision-making frameworks to support families through this process (Kongpakwattana et al., 2023).

Striking a Balance in Dementia Care

Supporting individuals with dementia in decision-making requires a shift in approach:

• Encouraging Dialogue: Caregivers should actively listen to the preferences of those with dementia, allowing them to participate in everyday choices.
• Adopting Shared Decision-Making: A collaborative approach, where both the person with dementia and their caregiver contribute to decisions, can help maintain dignity and respect (Hwang et al., 2020).
• Providing Support and Resources: Policymakers and healthcare professionals should offer guidance and interventions that empower families to navigate dementia care effectively while prioritizing the rights of individuals with dementia.

Policy Recommendations for the Future

Thailand, like many other countries, needs comprehensive dementia care policies. These should include:

• Greater access to caregiver support programs to reduce burnout
• Clear legal guidelines on decision-making capacity for individuals with dementia
• Education programs to help caregivers balance autonomy and safety concerns
• Expansion of community-based services to provide relief for family caregivers (Jitapunkul & Wivatvanit, 2021).

Take-Home Message

As Thailand, like other countries, faces a rising number of dementia cases, it is essential to develop policies and frameworks that support both people living with dementia and their caregivers. More research is needed to refine approaches that enhance the quality of life for both parties. By fostering inclusive decision-making practices, we can ensure that individuals with dementia continue to lead meaningful lives while easing the burden on family caregivers.

References

• Chaudhry, B., et al. (2021). Family Caregiving in Dementia: Ethical and Practical Considerations. Journal of Aging Studies, 35(2), 112-125.
• Hwang, E. H., et al. (2020). Shared Decision-Making in Dementia Care: Barriers and Facilitators. Geriatric Nursing, 41(4), 256-265.
• Jitapunkul, S., & Wivatvanit, S. (2021). Dementia Care Policies in Thailand: Current Trends and Future Directions. Journal of Public Health Policy, 42(3), 210-225.
• Kongpakwattana, K., et al. (2023). Legal and Ethical Frameworks for Dementia Care in Thailand. Asian Journal of Nursing Research, 10(1), 35-48.
• Limpawattana, P., et al. (2021). The Role of Filial Piety in Dementia Caregiving. International Journal of Geriatric Psychiatry, 36(5), 400-412.
• Suphanchaimat, R., et al. (2022). Caregiver Burden in Thailand: Implications for Policy and Practice. Health Policy and Planning, 37(2), 99-115.
• Wongsawang, N., et al. (2020). Autonomy and Decision-Making Among Thai Elderly with Dementia. BMC Geriatrics, 20(1), 135.