What makes a better life for people facing dementia? Toward dementia-friendly social policy, medical care, and community support in the United States

Introduction: How societal investments shape individual choices

People with dementia experience multiple threats to self-determination and to living well. Obvious threats arise from dementia itself: changes in cognition and function progressively erode the individual’s ability to self-determine. But self-determination also unfolds in the context of an individual’s environment. The array of options from which one can choose is often dictated by social policies and practices, and a lack of choices can constitute a threat to self-determination. Because policymakers in the United States routinely fail to invest in supportive dementia care, people living with dementia face limited choices.

Our society has not yet committed to a dementia care system that is universally available and not reliant on the labor and resources of unpaid family caregivers. Access to symptom-focused palliative care for people living with dementia is especially lacking. The federally financed hospice system has now been available for 40 years.^* People with dementia may qualify for and use hospice late in the course of their disease. However, hospice care that is narrowly focused on the end of life cannot compensate for the lack of a comparable federally-financed system of dementia care that would provide symptom-focused and emotional support over the many years people live with dementia prior to death.

The needs of people with dementia, and of dementia caregivers, are well documented. It is now time to articulate how an evidence-based dementia care system could respond to these needs and to muster the political will and societal consensus to finance the services our aging society requires.

Burdens and inequities

Older adults facing dementia often worry about burdening their families. If we are uncomfortable with the idea that people facing dementia think of themselves as “burdens,” we must recognize the real financial and other pressures associated with a diagnosis poorly supported relative to other end-of-life trajectories.¹

The lack of a federally financed dementia care system has led to variable local responses and significant differences in dementia services across the U.S., at the state, county, and community level. In such a fragmented system, it is hard for families to figure out what services they need, how to access these services, and how to pay for these services.

The financing of these services is especially problematic for the typical older American on a fixed income who may have difficulty paying for basics such as food and housing, let alone additional care support.² For this reason, the high cost of a dementia diagnosis routinely creates financial hardships for people and families who are not wealthy.³ Moreover, the hidden costs of unpaid labor by family caregivers, most of whom are women, exacts a heavy toll. The Alzheimer Association estimates that 70 percent of dementia care costs in the U.S. are borne directly by people with dementia and their families, rather than by Medicare or other insurers, as a result of unreimbursed care expenses and unpaid caregiving.⁴

Medicare, the federal health insurance program for U.S. adults age 65 and older which covers nearly all people living with dementia, does not cover the long-term services and supports needed by people with dementia. For example, a person with moderate dementia will foreseeably need personal assistance with bathing, toileting, dressing, and other activities of daily living. Yet, outside of short-term rehabilitative contexts, Medicare does not cover personal assistants or residential care. Some older adults qualify for Medicaid, a health insurance program for people with low income that is administered by states but funded jointly by states and the federal government. Medicaid is the major public insurer of long term residential (nursing home) care and other long-term services and supports.⁵ However, state Medicaid programs do not and cannot compensate for the lack of a comprehensive dementia care system.

The failure to create a dementia care system in the U.S. is inequitable because it exposes people with dementia and their caregivers to greater financial risk and hardship compared to other terminal illness trajectories. The current situation is also unjust, because it stratifies the receipt of “good” dementia care by income and privilege.

Toward an ethical framework for dementia-friendly care and policy development

It is much easier to enumerate reasons to not want to live with dementia than to think about how to live well with it. Some of that difficulty is attributable to the lack of social investments in dementia care. To promote self-determination, reduce inequities, and correct injustices, our society must do better by our fellow citizens facing dementia.

Bioethicists tend to encounter ethical issues related to dementia in the context of end-of-life decisions. There are challenging and important questions about how to care for persons who have lost decision-making capacity or who seek to hasten death. As a result of this myopic focus on the end of life, however, bioethicists have often overlooked the challenging and important ethical issues that arise in the six to eight or more years, on average, that people live following a dementia diagnosis and have also failed to speak out against systematic biases experienced by people facing dementia. There is a need for an ethical framework to guide health care practitioners and their community partners, one that encompasses living – not just dying – with dementia. While fully developing a robust framework is beyond the scope of this piece, we offer suggestions for its foundational principles, from the perspectives of primary care practice – the typical site of health care for people with dementia – and of research conducted with people facing dementia.

As a starting point, the public health concept of “dementia-friendliness” should be expanded to include care systems in which dementia is the organizing principle for providing needed services and supports. The concept of “dementia-friendliness” highlights the connections across medical, social, policy, and research dimensions of dementia care. Fostering these connections contributes to better choices and better lives for people facing dementia. Dementia-friendliness is also helpful in imagining an ethical framework focused more on the social dimensions of care – inclusion, engagement, and practical services and supports — than on medical care.⁶ Dementia-friendliness reflects the typical sites of dementia care – home and community – rather than focusing on the in-patient settings that are often centered in bioethics, and encourages learning and reflection on how ethical challenges arise and are managed in dementia care settings.⁷

Values such as interdependence, respect for persons (not limited to decision-making contexts), accommodation of the needs and limits of families who so often provide dementia care, and justice in financing and access to social systems, can animate an ethical framework for dementia-friendly care and policy development. The practical value of an ethical framework should be to support the person with dementia in their reality, support caregivers, and reflect their home and their community as the typical care settings for persons with early-stage and moderate dementia.

Identifying areas of consensus on principles of dementia-friendly care that reflect the full dementia trajectory and all dementia care settings is a task that should include geriatricians and other primary care providers, palliative care providers, social workers, nurses, family caregivers, and persons living with dementia, in collaboration with experts in bioethics, care ethics, disability ethics, population health, and social gerontology. Social work researchers, health humanities scholars, and community advocates familiar with successful dementia-friendly initiatives can also contribute valuable perspectives to articulating an ethical framework that connects clinical and community settings.

This multidisciplinary, collaborative effort should include critical reflection on values and working principles in use in different dementia care settings. Articulating principles of dementia-friendly care should avoid merely extending principles of hospital-based clinical ethics, a methodology designed for clinician consultation on medical decision-making, into the home and other non-hospital settings. Collaboration with dementia care practitioners and scholars should also help to clarify distinctions as well as overlaps between dementia care and palliative care.

Meeting the medical and care needs of people with early-stage and moderate dementia

Community-based primary care is and should be the front line of dementia care. The “medical home” model of primary care, in which a patient, often accompanied by a family caregiver, sees the same physician and team at each appointment, and builds familiarity and trust, is well-suited to dementia. Diagnosis and management of dementia, and good dementia care, ought not to rely mainly on specialist medical care. Nor can it—there are long waits for appointments at memory care clinics, which are not always conveniently located, and a shortage of dementia care specialists. For a host of reasons, patients may prefer to receive care from a community-based geriatrician or other primary care provider.⁸

Unfortunately, at present, many patients who exhibit signs of dementia lack a formal diagnosis or do not receive a diagnosis for many years. Barriers to diagnosis include primary care providers’ lack of time and lack of comfort with the diagnostic evaluation.⁹ Despite guideline recommendations, primary care providers perform standardized cognitive assessments less often than specialists.¹⁰ State health departments can support dementia care by offering training for practitioners such as physicians, nurse-practitioners, registered nurses, and social workers in working with patients and families facing dementia. Many states have developed state Alzheimer’s plans that aim to improve screening, increase diagnostic rates, and provide training and resources to caregivers as well as clinicians.¹¹

A significant challenge to meeting the needs of patients with early-stage and moderate dementia is the difficulty of obtaining insurance reimbursement for the services of case managers who specialize in dementia care. A care manager, typically a social worker or nurse who specializes in geriatrics, is often best-equipped to manage difficult aspects of dementia care. These individuals act as advocates and can help persons with dementia and their families connect with services and supports.

For example, a social worker can help family caregivers learn how to respond when a person with dementia expresses thoughts that are not grounded in reality or work with families to evaluate a person with dementia’s ability to drive safety and to discuss how to support stopping driving. The patient navigator model used in cancer care, which responds to the complexity of a disease trajectory, including its personal, family, and social dimensions, is analogous to social work in dementia care. In other areas of health care for people with chronic, progressive, or terminal illness there has been progress toward reimbursement for social work. For example, social workers are reimbursed for care provided through hospice programs under the Medicare Hospice Benefit. We are moving closer toward insurance reimbursement for the services of medical social workers who provide counseling for depression. We need to adapt these approaches for dementia care, with attention to financing, so that social workers can be integrated into primary care for people with dementia. Access to social workers during the dementia trajectory is not a luxury and should not be not contingent on philanthropy.

Geriatric nurse practitioners can play an important role in addressing all aspects of a patient’s treatment and plan of care. Many schools of nursing are now training nurse practitioners for these important roles, and nurses are developing evidence-based programs to support people living with dementia and their caregivers.

People with dementia and their families often talk about the difficulty of communicating in health care settings.¹² Primary care providers also need discussion tools to help them communicate with patients with dementia and with family caregivers. These resources have been developed to help providers talk about medical decision-making, palliative care, and the end of life.¹³ It is time to develop comparable resources for community-based health care providers who serve patients with dementia.

Meeting the social needs of people with dementia and their caregivers: dementia-friendly communities and networks

Stigma – social shame associated with identity, status, or behavior – is a common and serious problem for people experiencing symptoms associated with dementia.¹⁴ Because of stigma, individuals often fear a formal diagnosis and may avoid seeking help for themselves or, in the case of caregivers, for a family member. Avoidance of health care can result in worsening health for the person with dementia and add to the burden on caregivers. Caregivers may also experience “spillover stigma,” which occurs when a person is stigmatized as a result of their association with a stigmatized group. Individuals often worry that disclosing a dementia diagnosis to others will result in discrimination – or enacted stigma.

Gerontologists and other elder-focused scholars and practitioners have prioritized professional and public education about the stigmatizing effects of language and visual images concerning aging and dementia.¹⁵ Bioethicists should become familiar with these resources and contribute to needed research and resource development on stigma as it affects the experiences of living with dementia and of dementia caregiving. In medical education and clinical practice, we should also avoid perpetuating stigma through use of outdated or dehumanizing terms such as “demented” when referring to people with dementia or to behaviors associated with this condition.

The social needs of people with dementia – their need to engage with others – cannot be met solely through social services. People with early-stage dementia often find it hard to view and accept themselves as experiencing cognitive decline. To join a disease- or disability-specific support group is to acknowledge that you have something in common with other people with this health condition. Receptivity to talking about illness and joining support groups varies among individuals and across cultures. Also, community programs for older adults are often organized around the needs and interests of the “healthy” or “active” older adult. In communities with senior centers or “age-friendly” programs, barriers to the inclusion of people with dementia may reflect stigma, discomfort with disability, or assumptions that people with dementia are “homebound.”

To ensure that the social needs of people with dementia, and of dementia caregivers, are met, the vision and development of dementia-friendly communities should be broadly integrated into thinking about community life in aging societies.¹⁶ For example, Momentia, a Seattle-based initiative, offers an example of a dementia-friendly community clearing house, offering access to structured gatherings for people with early stage memory loss.¹⁷ Age-Friendly and Dementia-Friendly Massachusetts offers a model for state-level policy supporting community-level projects.¹⁸ The Georgia-based Alter Project offers research and resources for dementia-friendly congregations in Black communities.¹⁹ The World Dementia Council has published several reports on dementia-friendly initiatives worldwide, including research on the outcomes of these initiatives.²⁰

Outside the U.S, dementia-friendly communities are often part of networks that include academic researchers who study the impact of these programs and may provide opportunities for people with dementia, and dementia caregivers, to be part of research teams.²¹ Scholars in bioethics, disability studies, health humanities, social gerontology, and other fields can help develop or contribute to local dementia-friendly community programs through interdisciplinary scholarship on dementia and through empirical research on the development of community-level processes to support the experiences of living with dementia or of dementia caregiving.²²

Comfort-focused care in moderate and advanced dementia

Near the end of life, “comfort-focused care” refers to palliative care in which the primary goal is relief from bothersome symptoms, often as part of a transition from a care plan focused on life-prolonging interventions. In the context of dementia care, “comfort-focused care” also refers to offering physical and social environments, such as dementia-friendly programs and care orientations, that support the experience of living with dementia.

Research on the use of video decision aids that aim to depict the experience of progressive terminal illness has found that when study participants are shown a video depicting moderate dementia, most say they would want “comfort-focused care.”²³ People at this stage generally have three to six years to live and so are a long way from qualifying for hospice services, which require a prognosis of no more than six months. This is another example of how terminology and approaches may differ across dementia care and palliative care, and reflects how these practice areas developed in relation to different terminal illness trajectories.

To meet the ethical imperative to offer high-quality, comfort-focused care to people with dementia, it is time to bridge relevant research and practice in dementia care, gerontology, and palliative care to develop systems and payment models to deliver such care. Researchers and practitioners in bioethics should support and participate in interdisciplinary discussion, empirical research, and consensus-building around the concept and practice of “comfort-focused care” as a prospective guiding principle for medical decisions at any point along a dementia trajectory. Preliminary questions suggested by dementia care practitioners and researchers involved in the discussions that produced this report include:

• What is the concept of suffering that “comfort-focused care” responds to as part of dementia care?

  • Suffering is an ambiguous term that can be defined in numerous ways. Reviewing the literature, we identify at least three ways to define suffering that are relevant to the experience of dementia. Value-based theories of suffering suggest a state of distress related to things a person cares about personally. Feeling-based theories speak to the presence of unpleasant sensations, such as pain, or unpleasant feelings. Objective theories focus on the absence of human flourishing—that is, a general sense of what it means for a life to go well or poorly. To the extent that we think of suffering as justifying different interventions, it is important to think about the moral significance affixed to the kind of suffering with which we are concerned.
• What factors contribute to or mitigate suffering in a typical course of dementia?

  • For example, what non-pharmacological techniques are available to treat behavioral psychiatric symptoms, such as agitation and fear resulting from inability to understand one’s surroundings, setting off “fight or flight” responses?
• How should we recognize and repair inadequate or biased frameworks for identifying sources of suffering when someone has lost the ability to communicate their experience?

  • For example, when identified sources of suffering are limited to physical pain, physiological symptoms such as dyspnea, or psycho-social experiences such as anticipatory grief, this framing of the experience of suffering may suggest that people with dementia “don’t suffer” or “don’t look like” they are suffering.

• To what degree should progressive dementia be considered the organizing principle for someone’s overall care, mindful that some patients with dementia, or some surrogate decision-makers, will not choose to forgo life-prolonging interventions for comorbid conditions?

• How do cultural and institutional norms of comfort-focused care as a time-limited period close to death hamper communication and collaboration between primary care providers and palliative care specialists concerning patients with dementia, for example, by preventing patients with dementia who could benefit from hospice services from enrolling in hospice because they do not satisfy the “six-month rule”? (See [redacted] and [redacted], “Too soon, or too late: Rethinking the significance of ‘six months’ when dementia is a primary diagnosis”)

• How may frameworks associated with palliative care and hospice constrain research into suffering in dementia and the relief of suffering in dementia care? (See [redacted] and [redacted], see also [fill in updated titles pending revisions to other papers])

Developing culturally and socioeconomically attuned bioethics scholarship, teaching, and learning on dementia

The Covid-19 pandemic revealed sources of vulnerability and inequity within and across societies and will inform how bioethics and other health-related fields define and prioritize problems going forward. The experience of responding to the pandemic has shown us that personal preferences are insufficient to guide public health policy, cannot meet the needs and concerns of diverse populations, and may lead to counterproductive politicization of issues.

Our nation’s reckoning with systemic racism and its consequences, including health inequities experienced by multiply-vulnerable populations, must include facing and responding to inequities in brain health. Alzheimer’s disease, for example, is disproportionately more prevalent among African American and Hispanic older adults.²⁴

The pandemic also highlighted the importance of the work done by family and other unpaid caregivers, as well as the socio-economic precarity of many older adults, which predated and was exacerbated by the pandemic.²⁵ It also exposed the vulnerability of the workforce—underpaid, often immigrant—that provides care for persons with dementia.

Going forward, bioethics scholarship and recommendations concerning dementia will be strengthened by acknowledging population-level vulnerabilities to dementia and other health conditions. Research must be informed by perspectives from persons with dementia, family caregivers, and aides, among others, and, whenever possible, should aim to describe feasible policy recommendations. Bioethics scholarship should also aim to mitigate problems of underrepresentation in dementia research, including underrepresentation of minority communities and cultural perspectives in decision-making research and of people with dementia in non-clinical settings.²⁶

Beyond “autonomy” and “the family”: respecting persons, supporting caregivers

Bioethics scholarship, including teaching and learning in pre-professional and professional education concerning dementia, should critically reflect on the principle of respect for persons, which is often presented in terms of value-anchoring self-determination through medical decision-making, i.e., “autonomy.” Respect for persons should include more than decision-making. Even as dementia progressively erodes the capacity to make decisions, it does not erode the inherent dignity of the person; respect for persons calls upon us to see this dignity and honor it through the provision of dignified care. Thus, conflating respect for persons with respect for autonomy is an oversimplification that results in an impoverished bioethics of dementia.

Bioethics scholarship concerning dementia, informed by greater understanding of social causes of vulnerability in wealthy societies, should avoid defaulting to “the family” to solve care and financial problems. Recommendations should call attention to inequities embedded in how dementia care is financed relative to other end-of-life trajectories and to the injustice produced by stratifying quality of dementia care by ability to pay. Further, interventions must address the needs of caregivers, who can experience suffering as they provide care to the person living with dementia and grapple with the many challenges outlined within this report. Our health care system often focuses narrowly on the patient; yet the complexities of dementia care make it essential to expand our view to see and care for the caregiver, too. It is evidence-based and ethically imperative to develop policies and interventions that center care structures and supports on the patient-caregiver dyad to promote the wellbeing of both the person with dementia and their caregivers.

Conclusion: Toward dementia-friendly bioethics

Bioethics scholars and educators should be alert to their own fears, biases, and knowledge gaps concerning dementia. If, as individuals and professionals, we cannot imagine even the possibility of a good life for the many years that people often live with dementia, it will be difficult to argue for the importance of dedicating research agendas, tax dollars, and other resources to this condition. If we want a good life to be possible for people with dementia and to support their caregivers, we should be able to describe the care systems and policy commitments that would make a good life possible for all individuals. When we use examples from the U.S. or other nations, we should be able to describe whether a notable program is typical or atypical of dementia care in that society.

No one would ever choose to live with dementia. We must explore and prioritize payment for initiatives to improve the lives of those living with dementia and offer them a meaningful array of options. By responding to their needs rather than ignoring them, we will be better able to honor their personhood and give them the care they deserve.

Sidebar: Promising practices and policy barriers to improving dementia care systems.

PACE:

(Program of All-Inclusive Care for the Elderly) is a community-based care system funded by Medicare and Medicaid. PACE provides long-term services and supports to enable a person to live at home rather than in a facility, with some services provided at a designated community-based center. PACE services include primary medical, dental, and nursing care; prescription medications; home health care and personal care; rehabilitation and other adult day health care; and transportation for appointments.

Access to PACE varies by region and is based on need for assistance with activities of daily living (ADL). There is no chronological limit on the length of time a person can receive PACE services.

PACE could function well as a dementia care equivalent to hospice services by providing home-based care, usually in collaboration with a family caregiver. However, the number of PACE programs in the U.S. is insufficient to meet demand. In 2019, PACE programs in 31 states served approximately 50,000 participants, representing less than 10 percent of potentially eligible people in these states. A grant-funded PACE 2.0 National Learning Collaborative is underway to identify ways to expand enrollment to 200,000 participants by 2028.²⁷

Creative Communities of Care:

The Centers for Medicare and Medicaid Services (CMS) requires that CMS-financed programs have measurable outcomes related to health status. Dementia is a progressive condition. A person with advanced dementia needs continuous care, and their overall condition will continue to deteriorate. As a result, programs that improve quality of life in dementia care are difficult to evaluate using metrics designed to measure improved health status.²⁸ Gerontologist and MacArthur Foundation “Genius” Anne Basting, an innovator in arts and humanities-based approaches to improving dementia care in nursing homes, has been funded by CMS and other sources to develop Creative Communities of Care in 12 nursing homes in Kentucky. Basting’s collaborative approach to “bring joy to late life” through storytelling and performance offers nursing home residents and staff a different way of life, in which they may experience anticipation, creativity, purpose, transcendence, and other pleasurable states. Nursing home workers in Kentucky reported that they work in a stigmatized environment. Basting’s program likely benefits these workers by making them happier at work and by creating bonds between the communities where they live and the marginalized facilities where they work.²⁹