What Makes a Better Life for People Facing Dementia? Toward Dementia‐Friendly Health and Social Policy, Medical Care, and Community Support in the United States

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This introduction to the special report “Facing Dementia: Clarifying End‐of‐Life Choices, Supporting Better Lives” explains why focused attention to dementia is needed in bioethics and in health care practice in a range of settings. It explains how this strongly age‐associated condition shapes individual lives over years, revealing inequities in how dementia care is financed. The introduction explains the structure of the report, which consists of five essays, a consolidated set of recommendations from these essays, bibliographies, and other resources. The first essay is a landscape review written for health care professionals to support discussion, debate, and deliberation within professional societies and networks concerning a patient's voluntary choice to hasten their own death in the context of a dementia diagnosis. The landscape review is followed by three essays that suggest how several familiar concepts within care for persons with serious illness should be rethought to better support advance care planning, physician‐patient conversations, and access to community‐based palliative care and hospice when a person is facing dementia. The final essay presents a bold, practical argument for supporting better lives for people facing dementia, and for dementia caregivers, through primary care, the usual source of care for people with dementia.

Choice in the Context of Dementia: Emerging Issues for Health Care Practice in Aging Societies

Berlinger,

Largent,

Buchbinder

et al. 2024

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Too Soon or Too Late: Rethinking the Significance of Six Months When Dementia Is a Primary Diagnosis

Cain,

Quill

2024

Cultural narratives shape how we think about the world, including how we decide when the end of life begins. Hospice care has become an integral part of the end‐of‐life care in the United States, but as it has grown, its policies and practices have also imposed cultural narratives, like those associated with the “six‐month rule” that the majority of the end of life takes place in the final six months of life. This idea is embedded in policies for a range of care practices and reimbursement processes, even though six months is not always a meaningful marker. In the case of people living with advanced dementia, six months is both too early in the trajectory to facilitate conversations and too late in the trajectory to ensure decision‐making capacity. This essay encourages scholars and policy‐makers to consider how cultural narratives may limit what they think is possible in care for people living with dementia.

Guiding the Future: Rethinking the Role of Advance Directives in the Care of People with Dementia

Gaster,

Pope

2024

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When people lose capacity to make a medical decision, the standard is to assess what their preferences would have been and try to honor their wishes. Dementia raises a special case in such situations, given its long, progressive trajectory during which others must make substituted judgments. The question of how to help surrogates make better‐informed decisions has led to the development of dementia‐specific advance directives, in which people are given tools to help them communicate what their preferences are while they are still able. Such directives allow the perspective of the person to play a clearer role in guiding decisions about their care. Dementia directives can never serve as rigid algorithms. Rather, they can be used to help inform conversations, to help surrogates make decisions that are better aligned with the preferences the person would have had. This essay lays out the proposed utility of dementia‐specific directives and addresses some of the criticisms raised about them.