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Dementia, Dying, and COVID-19: Opening the Conversation
As the world continues to combat COVID-19, trends established in the beginning of the outbreak are becoming more prevalent, such as the disproportionate infection rates among the most vulnerable patient populations. Older adults, particularly those with Alzheimer disease and other dementias, are dying at increasing rates and the health care professionals put in place to care for these same patients are faced with new challenges. This column emphasizes the variance in COVID-19 death rates among the older adult populations as well as the need to open the conversation about death and dying with patients and those working in long-term care facilities (LTCFs) who are experiencing new levels of death and loss every day.
The conversation surrounding death and dying from COVID-19, has been front page news for over a year now and it has become difficult to avoid. The daily death counts for the nation, by region, state, and city has become a regular feature in television reports, newspapers, and internet dashboards. You could make the comparison to wartime, the difference being that we are fighting a virus that strikes vulnerable, older adults disproportionately.
The death toll from COVID-19 in the United States is staggering by any measure accounting for more than a half million deaths—similar to the the population of a small city—and the numbers keep rising. This data does not include the additional indirect deaths from lack of access to care, overloaded hospitals and emergency rooms, and the mental health toll inflicted by the pandemic—and still, the majority of this collateral damage is disproportionately occurring among older adults.
COVID-19 has claimed the lives of more than 150,000 long-term care residents and staff. Less than 1%1 of the population lives in long-term care facilities, but as of January 21, 2021, this fraction of the population accounts for 36% of all COVID-19 deaths in the United States. Approximately 80% of the fatal cases have been among persons older than 65 years,2 with a disproportionate percentage of these among residents of long-term care facilities. In some states more than 50% of COVID-19 deaths have been among long-term care residents and staff.
The pandemic has exacerbated the existing challenges of caring for patients in LTCFs, emphasized the need to openly acknowledge that neurodegenerative dementias are fatal illnesses, and showed the importance of recognizing the vulnerability of patients with these conditions throughout the course of their disease.
Acknowledging Increased Vulnerability
In the beginning of the pandemic in the United States, the vulnerability of nursing home (NH) patients to COVID-19 was made evident by the outbreak that occurred in a NH in Washington state. This event should have sounded the alarm and led to the institution or creation of precautionary policies across the long-term industry, but this did not happen. Instead the weaknesses in the long-term care (LTC) industry, the lack of preparedness to deal with infection among significant numbers of residents, the limitations of poorly trained and overworked staff, and supply chain difficulties in providing sufficient personal protective equipment for both residents and staff became fully exposed. While changes have since been implemented and the situation improved in many places, the result has been the additional loss of lives among both LTC residents and staff.
As the viral infection spiked globally, NH residents and staff found themselves, and the situation where they lived and worked, to be among the most vulnerable. Public health policy procedures for lockdowns were put in place to try and limit the spread of disease with the result that those with dementia became secondary victims, declining and literally dying from loneliness and feelings of abandonment. People with dementia are dying not just from the virus, but from the unintended consequences of social isolation that was supposed to protect them. Patients who have been stable for years became frail over the course of a few months, the number of falls increased, coupled with weight loss, failure to thrive, and depression. To avoid serious illness or death some families moved their older adult relatives with dementia back home, and many staff members resigned or simply stopped showing up to work.
Dementia is incurable and ultimately fatal. In the late stages, dementia is considered a terminal illness. It is often said that people die with and not from dementia because it is technically an underlying infection or complication to which the person with dementia ultimately succumbs. Having dementia predisposes a person to complications from an infection or other acute event and often weakens a patient to a point when recovery becomes difficult. This has only become more apparent this past year during the COVID-19 pandemic.
Pandemic-induced Death Rates and Blurred Lines
People with Alzheimer disease (AD) and other dementias have experienced higher rates of exposure to COVID-19 and are at greater risk of dying once they are exposed to the virus. The fatality rate for AD and other dementias is nearly 20% higher than average compared with recent years.3 Across the globe, older adults in NHs and congregate living facilities, many with AD disease or other forms of dementia, have experienced excess rates of COVID-19 infection and death. Living in a LTCF and carrying a diagnosis of AD has been shown to be independently associated with a higher probability of death.4
The death rate in the United States increased by 20% from March 2020 to July 2020, with COVID-19 the documented cause of two-thirds of these excess deaths.5 During surges in the pandemic, there were increases in deaths attributed to some noninfectious causes. Some of this could be due to unrecognized or undocumented infection with COVID-19, the result of disruptions in care, access to services, or other impacts of the pandemic among uninfected patients.
It is possible that we may never have complete data of how many people with dementia have died from COVID-19. If death was a direct result of COVID-19 infection but without a positive test, the death certificate may not list COVID-19 but instead the underlying disease that the person was diagnosed with. In other circumstances the death may not be directly due to COVID, but the result of the direct or indirect impact of the pandemic on persons with dementia. Declines in function due to lack of regular physical activity, declines in cognition due to social isolation, delays in care due to staffing shortages, closures of medical offices, and fears of going to an emergency room all have contributed to the rise in deaths of persons with AD and other dementias during the past year.
Conclusion
The pandemic has pointed out a need to openly acknowledge that AD and other neurodegenerative dementias are fatal illnesses, as well as the importance of recognizing the vulnerability of patients with these conditions, not just at the latter stages, but across the course of these diseases. The tendency to avoid open discussions of death and dying by both the public and some medical professionals creates an added burden for those who work in oncology, critical care medicine, and hospice, as well as patients. COVID-19 has permanently altered the concept for clinicians and nurses with a wide range of backgrounds and specialties and others who across the continuum of care rarely encountered dying patients as part of their work. These health care professionals are now caring for and experiencing the deaths of multiple patients in a single day. A positive takeaway from this year may be that the experience of the COVID-19 pandemic will help open up the conversation for patients with dementia and their families about death, dying, and the vulnerability that those with dementia face.
References
- The COVID Tracking Project. The long-term care COVID tracker. Accessed April 6, 2021. https://covidtracking.com/data/long-term-care.
- Centers for Disease Control and Prevention. Older adults at greater risk of requiring hospitalization or dying if diagnosed with COVID-19. Updated April 2, 2021. Accessed March 31, 2021. https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/older-adults.html
- Camp J, Overberg P. Coronavirus pandemic led to surge in alzheimer’s deaths. Wall Street Journal. June 28, 2020. Accessed March 31, 2021. https://www.wsj.com/articles/coronavirus-pandemic-led-to-surge-in-alzheimers-deaths-11593345601
- Matias-Guiu JA, Pytel V, Matías-Guiu J. Death rate due to COVID-19 in alzheimer’s disease and frontotemporal dementia. J Alzheimers Dis. 2020;78(2):537-541. doi:0.3233/JAD-200940
- Woolf SH, Chapman DA, Sabo RT, Weinberger DM, Hill L, Taylor DDH. Excess deaths from COVID-19 and other causes, March-July 2020. JAMA. 2020;324(15):1562–1564. doi:10.1001/jama.2020.19545
