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Guide to Enhancing Quality of Life for Dementia Patients through Improved End-of-Life Support

A recent special report from the Hastings Center explores how America’s aging population is responding to the challenges presented by dementia. While there have been advancements in new treatments that show promise in slowing the progression of this irreversible condition, there is still a lack of interventions to prevent or reverse it.

Co-led by a senior research scholar and President Emerita at Hastings, the report puts forth 10 recommendations specifically designed for policymakers, research funders, clinical and legal practitioners, and professional societies. The project is overseen by Berlinger and Solomon, in collaboration with a health policy expert from the University of Pennsylvania’s Perelman School of Medicine and a medical anthropologist from the University of North Carolina School of Medicine.

Berlinger emphasizes the report’s significance in providing a framework for discussions within the healthcare community and societies regarding decision-making processes related to medical treatments for age-related conditions like dementia. It sheds light on the societal choices that can either enhance or diminish the quality of life for individuals dealing with dementia, stressing the importance of addressing financial hurdles and social isolation associated with this diagnosis.

With 6.7 million individuals and 11 million family caregivers in the U.S. affected by dementia, the report portrays it as a condition that evolves over years, highlighting disparities in the funding of dementia care. It also delves into end-of-life decision-making in the context of terminal illnesses, examining the legal and professional dimensions, especially concerning issues like voluntarily stopping eating and drinking (VSED), a complex ethical dilemma in healthcare.

Furthermore, the report includes essays that challenge traditional viewpoints on end-of-life care for individuals with dementia, aiming to better meet their specific needs. For example, the criticism of the “six-month rule” as a criterion for Medicare hospice coverage eligibility for terminal illnesses prompts a reassessment of resource distribution for dementia patients and their families.

In a persuasive argument, Gaster and Largent advocate for aligning primary dementia care with supportive health and social policies, drawing inspiration from the “dementia-friendly” movement. They suggest strengthening primary care settings as the focal point for dementia care, showcasing successful initiatives in the U.S. while tackling existing policy barriers.

Funded by The Robert W. Wilson Charitable Trust, this special report underscores the pressing need to tackle the obstacles faced by aging societies in navigating the complexities of dementia care and end-of-life decision-making.