Dying with Dementia: Under-recognized and Stigmatized

Dementia is a progressive and incurable condition causing significant public health burden to individuals, families, and society.¹ In response, the United States National Plan to Address Alzheimer’s Disease established goals to address the impact of dementia, including expanding supports for people with dementia and their families.² Congress has exponentially increased National Institute of Health funding for dementia research since 2015. Yet there is an elephant in the room: death.

Dementia is ultimately a terminal condition. Alzheimer’s disease, the most common dementia etiology, is the 6^th leading cause of death in the United States and is one of the few leading causes of death where the age-adjusted death rate is increasing (Figure 1).³ Even more people die with dementia as a comorbidity to another serious illness or illnesses, although dementia is not officially the cause of death. In total, thirty percent of all decedents over the age of 65 in the United States die with or from dementia.⁴ The number of individuals with dementia enrolled in hospice has increased exponentially over the past 20 years, to the point that almost half of all hospice recipients annually have a primary or comorbid diagnosis of dementia.⁵ Despite the high prevalence of dementia at end-of-life, discussions about dementia rarely acknowledge its terminal nature. In the 115 pages of the National Plan to Address Alzheimer’s Disease 2018 update, the term “death” appears just twice, “hospice” once, and “palliative care” four times.²

Figure 1.

Changes in death rate per 100,000 standard population for selected causes of death in the United States, 1979–2016. Figure adapted from Xu J, Murphy SL, Kochanek KD et al. Deaths: Final data for 2016.³

By failing to discuss death and dying, we fail to adequately attend to the end-of-life needs of people with dementia and their caregivers. This end-of-life experience is characterized by a high burden of pain and other sources of distress, frequent burdensome hospitalizations, and invasive procedures that neither improve length nor quality of life.⁶ Families of people with dementia spend an average of $61,000 out-of-pocket in the last 5 years of life – twice as much as other terminal conditions – in addition to thousands of hours caregiving that may negatively impact financial, physical, and mental wellbeing.⁷

Because dementia is under-recognized as a terminal condition, our current models for end-of-life care are not tailored for the needs of people with dementia and their caregivers. Hospice and palliative care were by and large designed for people with metastatic cancer, which generally follows a rapid and predictable end-of-life course. For cancer patients, determining 6-month prognosis required for Medicare Hospice Benefit eligibility has been relatively straightforward. However, for people with dementia, a slow and unpredictable decline makes it difficult to determine hospice eligibility.⁸ Due to challenges with prognosis, clinicians are uncertain about appropriate timing of referral to hospice. This leads to either brink-of-death referrals to hospice or, paradoxically, long lengths of stay in hospice that frequently end in discontinuation of hospice services when the patient’s condition stabilizes and they no longer meet hospice eligibility criteria.⁹ Pre-hospice palliative care, while commonly available in hospitals, has limited availability in community settings where people with dementia reside; its expansion is currently hindered by the lack of a sustainable reimbursement mechanism.¹⁰

Why do we fail to acknowledge death in dementia? It is not unusual to avoid discussing death—death is stigmatized in our society. The culture of medicine is rooted in the desire to heal and cure and struggles with the inevitability of degeneration and death. Of course, it is critical to strive to develop effective treatments and potential cures for dementia. Yet hopes for future treatments should not impede more immediately critical conversations between clinicians, patients, and families around death and dying. While simultaneously hoping for a cure, clinicians must also help provide patients and families with anticipatory guidance about trajectories of decline in dementia, encouragement to think about potential future care choices (e.g. remaining at home versus moving to assisted living or a nursing home), and acknowledgement of grief, which in the case of dementia is often complicated by the feeling of “losing” the person they once knew before death occurs.

It is unsurprising clinicians do not leap to have these conversations. Discussing bad news and death is uncomfortable and requires skill and training to do well. Providers may avoid such conversations, assuming someone else will take responsibility for having these conversations. For example, a neurologist may assume the primary care physician will address advance care planning; the PCP may expect that the neurologist, who has more disease-specific knowledge, will address prognosis and anticipatory guidance. Often, stymied by short office visits and productivity pressures, neither provider says anything at all.

Layering on to the stigma of death is the stigma of dementia. People avoid getting screened for fear of a being labeled with a stigmatized diagnosis.¹¹ Diagnostic stigma has multiple sources: people and caregivers may not want to put a name to a disease for which there is no cure and only symptomatic treatments, where the disease fundamentally changes the person, and where the disease may require the person to relinquish autonomy. For individuals, lack of diagnosis means missed opportunities to access available resources and, importantly, to share their core values, goals and preferences for end-stage care with proxy decision-makers before the disease erodes that ability.

Other diseases may provide lessons for emerging from stigma and improving end-of-life care. For a long time, terminal diseases like cancer or HIV were highly stigmatized. Efforts of patients, community organizations, and providers were essential for reducing this stigma. Simultaneous efforts were made to develop treatments and to expand access to palliative care. Palliative care from diagnosis onward is now part of standard evidence-based care for both cancer and HIV, enabling advance care planning discussions and management of sources of distress. Disease-delaying treatments or cures transformed HIV and some cancers from definitively terminal to chronic serious illnesses, with palliative care available throughout. Parallel pursuit of destigmatization, incorporation of palliative care, and efforts towards treatment and prevention can successfully coexist.

One key component to destigmatization is to have open, honest conversations where patients and families are informed about the diagnosis and prognosis of dementia, including acknowledgment that dementia is a terminal condition. Palliative care has developed many evidence-based supports and tools to help providers broach difficult and stigmatized conversations around diagnosis of serious illness and death and dying. Some of these tools include Vital Talk, End-of-Life Care Nursing Education Consortium project, and Prepare for Your Care, among others.^12–14 Such tools and concepts are now being developed and adapted to the emerging field of geriatric palliative care, which considers the unique needs and characteristics of older adults facing serious illness.^15,16

A geriatric palliative care approach to dementia care can help guide clinicians on when and how to approach difficult conversations, determine how to meet current needs and anticipate future ones, and decide on the necessity for consultations or referrals (e.g. referral to hospice) (Figure 2). This approach not only takes into account the trajectory of decline in dementia, but also the important reality that cognitive and functional impairments resulting from dementia alters the end-of-life care needs of these individuals, even when dementia is not formally the cause of death. Recent trials show that geriatric palliative care interventions, such as a palliative care intervention for older adults with dementia in nursing homes, are effective at reducing burdensome transitions and improving quality of symptom management.¹⁷

Figure 2.

Integrating a geriatric palliative care approach to dementia care across the trajectory of decline.

Due to workforce shortages, it is impossible for geriatric and palliative care specialists to attend to the growing number of people with dementia.¹⁸ Thus, we need to ensure that all members of the clinical care team, both in primary care as well as specialties such as neurology, are steeped in the basic principles of geriatric palliative care for people with dementia.^19,20 These basic skills include evaluating and managing behavioral symptoms and other sources of distress, initiating discussions about advance care planning, effectively managing comorbid conditions, and providing anticipatory guidance around prognosis and disease trajectory.

If we want to achieve the goals of the National Plan to Address Alzheimer’s Disease we need to acknowledge and destigmatize the terminal nature of dementia. The 2018 Update to the National Plan acknowledges this with a new goal to understand the functional trajectories of people with dementia at the end-of-life. This is a start, but we need to do much more. We need to teach clinicians how to comfortably walk beside people with dementia and their family members through a long and uncertain prognosis towards a certain death. We need to empower all providers to take responsibility for starting and continuing difficult conversations with their patients with dementia about death and dying and provide them with sufficiently long office visits to accommodate these conversations. Ultimately, we need to continue to create and build adequate supports for patients and families and provide them with high-quality evidence-based geriatric palliative care for dementia.