Alzheimer’s Disease (AD) is a devastating neurodegenerative disease that primarily affects people age 65 or older. It is the most common form of dementia in the world and progressively destroys brain matter, resulting in the loss of memory, communication, reasoning, and conscious thought, as well as difficulty recognizing familiar faces, and personality changes that can include paranoia and hallucinations.
AD already affects 50 million people worldwide, and that number is expected to grow to 152 million by 2050. Currently, no treatments effectively prevent the disease or stop its progression. As the disease progresses, AD patients require intensive, round-the-clock care, either from family members or long-term care facilities. Eighty percent of these patients receive at-home care from relatives, often due to the prohibitive cost of long-term care facilities and a desire to keep the affected family member in a familiar environment. It is estimated that in 2018, 16 million people in the United States provided a total of 17 billion unpaid hours of care to Alzheimer’s patients annually. Many of the rest of the patients live in long-term care facilities such as nursing homes. AD also puts an extreme financial burden on the healthcare system; it is the third most expensive disorder in the U.S.
The challenge of handling Alzheimer’s Disease has worsened during the global COVID-19 pandemic. Dementia has been associated with a higher risk of infection, severe symptoms, and mortality from COVID-19. This comorbidity speeds up the progression of COVID-19 and suppresses visible symptoms such as coughs, resulting in a delay in treatment for AD patients. Coupled with the impact of the pandemic on nursing homes in the United States, the social isolation of Alzheimer’s patients in these homes, additional stressors on their at-home caregivers, and debates about vaccination, the pandemic may have dealt a long-term blow to dementia care.
The onset of COVID-19 significantly increased stress on at-home carers. The pandemic has had negative effects on the mental health of many people. Long-term impacts of the pandemic include anxiety, anger, depression, and behavioral changes related to COVID-19 policies. Social distancing in particular has been linked to increases in loneliness, depression, and anxiety. As Alzheimer’s patients are more at risk of severe symptoms when infected, it is likely that the burden of care has worsened their caregivers’ mental health.
Some of the first institutions impacted by the COVID-19 pandemic were nursing homes. People above the age of 50 are at a much higher risk of requiring hospitalization after being infected compared to younger people. As such, nursing homes were some of the hardest-hit places at the start of the pandemic. Many nurses in less densely populated areas were laid off or furloughed at the beginning of the pandemic as facilities shut down anything other than emergency or COVID-related services. Those who have worked in healthcare during the pandemic long-term have experienced burnout, depression, and secondary trauma, which has caused many to leave their jobs. Reduced employment and demoralization of existing employees may limit access to care for those patients who can afford long-term care facilities, as well as increase the difficulty of caring for them.
For AD patients in long-term care facilities, isolation from their families has been shown to worsen the progression of Alzheimer’s Disease. Isolation measures contribute to feelings of loneliness and abandonment, which could worsen behavioral changes for Alzheimer’s patients in the moderate and severe stages of the disease. Infection prevention measures also reduce interaction between nurses and patients, causing isolation even in patient-caregiver interactions.
Online video correspondence with family members has been shown to reduce aggression in distressed or isolated Alzheimer’s patients, as it allows them some contact with relatives who may still be familiar to them. Despite online accommodations, pandemic-induced isolation severely increased difficulties for both caregivers and their patients.
Further problems have arisen with attempts to transition to treating COVID-19 as endemic. The development of messenger RNA COVID-19 vaccines has been met with both excitement and skepticism in the public, a recent example of an ongoing division in beliefs regarding the safety and efficacy of vaccines. Despite the severity with which COVID-19 infects AD patients, AD complicates the decision-making process when it comes to vaccination. Due to the loss of reasoning and communication skills that AD patients experience, they are unable to ask for or truly consent to medical treatment. Thus, they are appointed a healthcare proxy who can make medical decisions for them.
Alzheimer’s patients are in a unique position when it comes to the COVID-19 vaccine: they are some of the most at risk for severe symptoms and death, both because of the AD-COVID comorbidity and because these patients are almost always elderly. If their proxy does not choose to vaccinate them, they retain the same high risks of a potentially life-threatening virus. If their proxy chooses to vaccinate them, the proxy may have violated their wishes as the patient may have been against vaccinations. A conflict thus exists for the proxy as they attempt to balance the medical needs of the patient with their personal wishes and autonomy. COVID-19 vaccines will likely continue to be a fierce debate, both for healthy people and for the medical proxies of AD patients; despite the impasse, it has brought to attention the challenging moral decisions that caregivers for AD patients are tasked with making.
The mental health and employment impacts of the pandemic on caregivers, both at home and in long-term facilities, are likely to reduce the availability and quality of care for Alzheimer’s patients. Moving forward in a post-pandemic world, significant changes to how care is provided to AD patients may be necessary, both for patients and caregivers. With an estimated 152 million AD patients in the U.S. by 2050, developing a sustainable care system is critical. Government grants such as those proposed in the Alzheimer’s Caregiver Support Act could be used to expand the resources available to the families and caregivers of AD patients, alleviating the gaps in care caused by the COVID-19 pandemic.