People living with dementia have experienced higher rates of COVID-19 infection and worse outcomes compared to the general population during the pandemic, according to a 2021 study in the journal Alzheimer’s & Dementia.1 A 2022 study of enrollees in Medicare found a 25.7% increase in adjusted death rates for people with dementia from March to December 2020 compared to the same period a year earlier.2 This rate is double the increase seen for other enrollees (12 .4%). The increase in mortality among people with dementia was particularly high (from 36.0% to 40.1%) among Asian, Black, and Hispanic populations. Along with the increased vulnerability associated with the virus itself, pandemic-related factors such as social isolation and reduced health care services have negatively impacted the lives of many people with dementia and their caregivers. Multiple studies have shown an association between social isolation due to the pandemic and greater severity of neuropsychiatric and behavioral disorders in older adults with dementia.3 Continue reading In a February 2022 study published in Scientific Reports, the pandemic was associated with increased depression (39.0%), apathy (36.8%), anxiety (30.4%) and agitation (25.9%) among of people living with dementia and high rates of delusions (35.3%) and hallucinations (22.5%) were observed.4 Other studies have reported detrimental effects on the mental and physical health of caregivers of people living with dementia, attributed to factors such as increased responsibility and reduced social support services due to COVID-19 restrictions.5 “I’m concerned that we don’t really understand the full toll of the pandemic on people with dementia because I don’t think many people have been tracking or measuring these changes,” said Carla Perissinotto, MD, MHS, geriatrician and palliative care physician, co-author. chief for geriatrics clinical programs and associate professor in the department of geriatrics at the University of California, San Francisco (UCSF) School of Medicine. Dr. Perissinotto acknowledges that there has been more emphasis on the long-term effects of the pandemic on children and their mental health and less on the elderly. “I don’t think we’ll ever really know the full extent of the impact [on older adults]and I don’t see much being done to change the infrastructure to prevent this from happening in the future.” But now that the pandemic is becoming more endemic, things are looking up among seniors with dementia, according to Michelle T. Panlilio, DNP, GNP-BC, a dementia care specialist at the University of California, Los Angeles, Alzheimer’s and Dementia Program. care. “Many of our patients have survived and are seeing family and getting back into activities. Some were able to bounce back as if nothing had happened. The resilience I’ve seen in my patients has been amazing, but it’s too early to tell what the long-term impact will be,” Panlilio said. To learn more about the pandemic’s impact on people with dementia and their caregivers, we spoke further with Panlilio, along with Ashwin Kotwal, MD, MS, assistant professor in the department of geriatrics at UCSF and director of the Outpatient Telehealth Palliative Care Program at the San Francisco VA Medical Center, and Ian C. Neel, MD, assistant professor of medicine at the University of California, San Diego (UCSD) School of Medicine and medical director of the geriatric consultative service in Senior Behavioral Health at UCSD. So far, what are the known impacts of the pandemic on the lives of people living with dementia? Dr Kotwal: The pandemic has been devastating for many people living with dementia as well as their carers. As social isolation continued, people with dementia experienced decline in function, cognition and overall well-being. They had less physical activity due to less social interaction, less cognitive stimulation, and increased behavioral challenges. These needs have been amplified among nursing home residents and assisted living facilities, where lockdowns and infection control measures have been put in place due to frequent spikes in the virus. Dr Neel: We have seen a dramatic increase in the number of patients presenting with initial complaints of cognitive impairment to the memory disorders program during the pandemic. Nonpharmacological interventions, including regular physical exercise, mental activity, healthy eating, and social engagement can help delay the progression of symptoms with cognitive impairment as well as reduce the risk of developing cognitive impairment. With the pandemic and the necessary social isolation that has resulted from it, we have seen many people lose access to these non-pharmacological methods. Exercise groups have been canceled and adult day centers closed, for example, resulting in missed opportunities to engage in activities that may be beneficial for cognitive health. These factors have been associated with increased risk for functional and cognitive decline. Panlilio: Even before the pandemic, we expected a significant drop when a dementia patient was hospitalized for any reason, but with COVID-19 it’s much worse for them. In addition, there is now a shortage of all kinds of health care providers, including agency caregivers. It used to be easy to find these if the family had the money to pay for them, but now it’s very difficult, even with some of the care agencies we’ve worked with for decades, because they’re understaffed. This is concerning because patients are more likely to have falls and not take their medications when they do not have caregivers. This also affects home health care services that provide care by licensed personnel, including wound care, medication management, and physical therapy. In our program, we try to supplement care with these services, and it is usually assumed that when patients are discharged from the hospital, they will receive home health services. For the first time in my career – and I’ve been a registered nurse for 17 years – these companies are rejecting our referrals because they can’t meet the demand. This is another reason we are seeing a decrease in our patients. At the beginning of the pandemic, it was extremely isolating for my patients because many of them live in assisted living or board and care homes. During the first year, our patients who thrived on socialization had to be left alone in their rooms, and many did not understand why they had to stay there. Some thought they were being held in jail — I could hear the patients banging on the door when I was on the phone with the staff at the assisted living facility. The amount of drugs we had to prescribe at first was astronomical. Compared to that time period, I have never been prescribed so many antidepressants and antipsychotics in my entire career combined. My colleagues and I lost many of our patients, especially before the vaccine became available. In our program we send condolence cards when patients die, and a week after the pandemic hit, that stack of cards was 2 inches thick. These are people I’ve cared for for years, so it’s devastating. How has the pandemic affected the lives of carers of people living with dementia? Dr Kotwal: Physical distancing restrictions created barriers to obtaining outside or paid caregiver support for much of the pandemic, leading to burnout among family members and unmet functional needs. Services such as respite care, adult day care centers and other services that were previously lifelines for families were not available. Panlilio: I would say the impact on caregivers is mixed. In the beginning, many were able to spend more time and have more meaningful relationships with mom and dad, but now families are being depleted and destroyed. Over time, it really wore on our caregivers, who felt feelings of despair and overwhelm. As a program, one thing we were able to provide during the first period of the pandemic was counseling because it was one of the only things we could do through Zoom. Also, support groups quadrupled in attendance from about 6-12 people to up to 40 participants. What are some recommendations for how clinicians can best address these issues? Dr Neel: Now that we’re seeing reduced restrictions, it’s important to encourage patients to start returning to the activities they did before the pandemic. The pandemic is certainly not over, and we are currently seeing an increase in cases of COVID-19, underscoring the continued importance of following strategies to reduce the risk of infection, such as avoiding uncovered indoor gatherings and wearing a mask when around by others, even though the mask commands have been removed. However, getting out of the house and engaging in activities and events with others is an essential part of cognitive health. Panlilio: Clinicians are generally great at providing medical care, but they could do better at providing socialization and community ties. Dementia patients, especially in advanced stages, really need a lot more social engagement. As patients get older, I think neurologist colleagues need to talk more about quality of life and enroll patients in community organizations such as adult day centers and memory care…
