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Dying With Dementia: Underrecognized and Stigmatized

Dementia is a progressive and incurable condition, causing significant public health burden to individuals, families, and society. 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. Congress has exponentially increased National Institutes 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 sixth 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). 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, 30% of all decedents older than 65 years in the United States die with or from dementia. 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. Despite the high prevalence of dementia at the 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. By failing to discuss death and dying, we fail to adequately attend to the end-of-life needs of peoplewith 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. 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 of caregiving that may negatively impact financial, physical, andmental well-being. Because dementia is underrecognized as a terminal condition, our current models for end-of-life care are not tailored to meet 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. 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 the patient no longermeets hospice eligibility criteria. Prehospice palliative care, while commonly available in hospitals, has limited availability in community settings and its expansion is currently hindered by the lack of a sustainable reimbursementmechanism. 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 about 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 (eg, remaining at home vs 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 (PCP) 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 being labeled with a stigmatized diagnosis. 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, a disease that fundamentally changes the person, and a disease that may require the person to relinquish autonomy. For individuals, lack of diagnosis means missed opportunities to access available resources and, importantly, to share Harrison and Hunt contributed equally to this article as first authors. Ritchie and Yaffe contributed equally to this article as senior authors.