92% of elderly with advanced dementia received 'burdensome medical interventions': Study

Key Concepts

• Burdensome Medical Interventions: Medical procedures, such as feeding tubes and restraints, that are used for patients with advanced dementia but do not improve their comfort or reduce caregiver burden.
• Advanced Dementia: A severe stage of dementia where individuals have significant cognitive and functional impairments.
• Caregiver Burden: The physical, emotional, and financial toll experienced by individuals caring for a loved one with a chronic illness.
• Patient Comfort: A primary goal in palliative care, focusing on alleviating suffering and promoting well-being.
• Dementia Trajectory: The natural progression of dementia over time, including expected changes in symptoms and functional abilities.
• Palliative Care: Specialized medical care focused on providing relief from the symptoms and stress of a serious illness to improve quality of life for both the patient and the family.
• Information Gap: A lack of essential information provided to caregivers regarding prognosis, treatment options, and available support.
• Care Buddy App: A mobile application designed to provide information, connect caregivers with healthcare providers and peers, and offer support for home-based dementia care.

Burdensome Medical Interventions in Home-Based Dementia Care in Singapore

A recent study by Duke NUS found that a significant majority (90%) of older adults with advanced dementia living at home in Singapore experience what researchers term "burdensome medical interventions" in their final year of life. These interventions, including the use of feeding tubes and restraints, are common despite not improving patient comfort or reducing caregiver burden. This situation is not unique to Singapore but highlights a critical need to better support caregivers in home-based care settings, as opposed to long-term care facilities which are more common globally.

Shortcomings in Current Home-Based Dementia Care

1. Insufficient Communication Between Caregivers and Healthcare Providers: Associate Professor Chetna Malhotra suggests that a primary area of deficiency is the lack of adequate conversations between caregivers and healthcare professionals. These discussions are crucial for healthcare providers to understand the caregivers' priorities, beliefs, and value systems, enabling them to deliver care that aligns with what is important to the family.

2. Disconnect Between Care Goals and Interventions: Despite 98% of caregivers agreeing that patient comfort is a primary care goal, interventions like feeding tubes and restraints are still employed. Dr. Ellie Boswick Andre explains this discrepancy by pointing to the emotional nature of decision-making in these situations, especially when prior conversations about comfort care preferences have not occurred. Caregivers may resort to immediate, practical solutions without considering long-term implications or the patient's potential wishes.

3. Lack of Long-Term Planning and Information: The research indicates that caregivers sometimes feel compelled to use certain tools or interventions due to a perceived lack of alternatives, particularly when they haven't considered the dementia trajectory. This leads to decisions that are feasible in the moment but may not align with long-term comfort or quality of life.

Addressing Caregiver Needs and Information Gaps

1. Reconciling Caregiver Needs with Patient Dignity and Quality of Life: Caregivers often face the dual challenge of not wanting their loved ones to suffer while also hoping for more time with them. The recommendation is to encourage caregivers to consider what their loved one would have wanted and to engage in conversations with providers about the extent of interventions they are willing to pursue before treatments become burdensome.

2. Overcoming Communication Challenges with Patients: When patients with dementia lack the capacity to communicate their needs clearly, preliminary conversations are vital. Dr. Boswick Andre emphasizes the importance of discussing shared values and potential patient preferences with loved ones before acute situations arise, or with healthcare providers to establish a plan.

3. The Critical Information Gap on Prognosis: A significant finding is that only 15% of caregivers are informed about how much longer their loved ones might live. This information gap is attributed to the difficulty of having such conversations and the inherent variability in prognosis. However, having a "roadmap" that outlines the phase of dementia, expected progression, and potential future scenarios is crucial for caregivers to make informed decisions, prepare emotionally and practically, and make necessary arrangements.

4. Impact of Information Gap on Caregivers and Patients: Associate Professor Malhotra highlights that for caregivers in Singapore, where most dementia care is home-based, this information gap is particularly painful and difficult. Caregivers are the primary palliative care providers and require substantial support, not just emotionally but also with practical skills to manage situations like agitation or refusal to eat, and to understand available care options beyond interventions like tube feeding.

Support Systems and Initiatives for Caregivers

1. Comprehensive Support for Caregivers: The researchers acknowledge the exhausting nature of caregiving and the need for robust support systems. This includes emotional support from peers and others in similar situations, as well as practical guidance on various aspects of care.

2. The "Care Buddy" Mobile App: The Lean Foundation for Palliative Care at Duke NUS is developing technological solutions to reach caregivers. They have designed a mobile app called "Care Buddy," envisioned as a one-stop solution providing essential information, connecting caregivers with healthcare providers and other caregivers, and offering support throughout their journey.

3. Vision for Wider Reach: With an estimated 70,000 or more caregivers in Singapore facing these challenges, the vision is to extend the reach of such support initiatives to all of them.

Conclusion

The study underscores a critical need to enhance support for home-based caregivers of individuals with advanced dementia in Singapore. Key areas for improvement include fostering open communication between caregivers and healthcare providers, ensuring that medical interventions align with patient comfort as a primary goal, and bridging the significant information gap regarding prognosis. Initiatives like the "Care Buddy" app represent a step towards providing caregivers with the necessary information, practical skills, and emotional support to navigate the complexities of dementia care, ultimately improving the quality of life for both patients and their caregivers.