Impact of the COVID-19 Pandemic on People Living With Dementia and Caregivers

The COVID-19 pandemic has disproportionately affected individuals living with dementia and their communities. Infection rates, social isolation, shortage of health care workers, among other factors, has left this patient population, along with their caregivers, vulnerable. The data on the long-term physical, mental, and social health effects of the pandemic are still limited, but they do reveal there’s a growing need for support for both patients with dementia and caregivers.

People living with dementia have shown higher rates of COVID-19 infection and worse outcomes compared with the general population during the pandemic, according to a 2021 study in the journal Alzheimer’s & Dementia.¹ A 2022 study of Medicare enrollees found a 25.7% increase in adjusted mortality rates for people with dementia from March through December in 2020 compared to the same period the previous year.² This rate is 2 times the increase observed for other enrollees (12.4%). The increase in mortality among those with dementia was especially high (ranging from 36.0% to 40.1%) among Asian, Black, and Hispanic populations.

Along with increased vulnerability related to the virus itself, pandemic-related factors such as social isolation and reduced health care services have negatively impacted the lives of many of individuals with dementia and their caregivers. Multiple studies have demonstrated an association between social isolation due to the pandemic and greater severity of neuropsychiatric and behavioral disturbances in older adults with dementia.³

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 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 decreased social support services due to COVID-19 restrictions.⁵

“I worry that we don’t actually understand the complete toll of the pandemic on people with dementia because I don’t think many were tracking or measuring these changes,” said Carla Perissinotto, MD, MHS, geriatrician and palliative care physician, associate chief for geriatrics clinical programs, and associate professor in the division of geriatrics at the University of California, San Francisco (UCSF) School of Medicine. Dr Perissinotto acknowledges that there has been a greater focus on the long-term effects of the pandemic on children and their mental health and less about older adults. “I don’t think we will ever really know the full magnitude of the impact [on older adults], and I don’t see much being done to change infrastructure to prevent this from happening in the future.”

However, now that the pandemic is becoming more of an endemic, things are improving among older adults with dementia, according to Michelle T. Panlilio, DNP, GNP-BC, dementia care specialist at the University of California, Los Angeles, Alzheimer’s and Dementia Care Program.

“Many of our patients survived and have been seeing family and engaging in activities again. Some were able to bounce back like nothing 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,” said Panlilio.

To learn more about the impact of the pandemic on people with dementia and their caregivers, we spoke further with Panlilio, along with Ashwin Kotwal, MD, MS, assistant professor in the division of geriatrics at UCSF and director of the Outpatient Palliative Care Telehealth 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 medicine consult service at Senior Behavioral Health at UCSD.

So far, what are the known effects of the pandemic on the lives of people living with dementia?

Dr Kotwal: The pandemic has been devastating to many individuals who live with dementia as well as their caregivers. As the social isolation has continued, persons with dementia have experienced declines in function, cognition, and overall well-being. They have had less physical activity due to less social interaction, less cognitive stimulation, and increased behavioral challenges. These needs have been amplified among nursing home and assisted living facility residents, where lockdowns and infection control measures have been in place due to frequent surges of the virus.

Dr Neel: We have seen a dramatic rise in the number of patients presenting for initial complaints of cognitive impairment in our memory disorders program over the course of the pandemic. Non-pharmacologic interventions including regular physical exercise, mental activity, healthy diet, and social engagement can help in delaying symptom progression with cognitive impairment as well as reducing the risk of developing cognitive impairment.

With the pandemic and the necessary social isolation that arose from it, we saw many people lose access to these nonpharmacologic modalities. Exercise groups were canceled and adult day centers closed, for example, and this resulted in lost opportunities to engage in activities that can be beneficial to cognitive health. These factors have been associated with an increased risk for functional and cognitive decline.

Panlilio: Even before the pandemic, we expected significant decline when a patient with dementia was hospitalized for whatever reason, but with COVID-19 it’s much worse for them. On top of that, there is now a shortage of all kinds of health care providers, including caregivers from agencies. These were previously easy to find if the family had money to pay for them, but now it’s very difficult, even with some of the caregiver agencies we’ve been working with for decades because they are understaffed. This is concerning because patients are more likely to have falls and not get their meds when they don’t have caregivers.

This is also affecting home health care agencies providing care by licensed staff, including wound care, medication management, and physical therapy. In our program, we try to supplement care with these services, and it has typically been 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 nurse practitioner for 17 years — these agencies are turning away our referrals because they can’t meet the demand. That’s another reason we’re seeing decline in our patients.

In the very beginning of the pandemic, it was extremely isolating for my patients because a lot of them live in assisted living or board and care homes. During the first year, our patients who thrived on socialization had to stay in their rooms alone, and many didn’t understand why they had to stay there. Some thought they were being held in prison — I could hear patients banging on the door when I was on the phone with staff at assisted living facilities.

The amount of meds we had to prescribe in the beginning was astronomical. Compared to that time period, I have never prescribed so many antidepressants and antipsychotics in my whole career combined.

I and my colleagues lost many of our patients, especially before the vaccine became available. In our program we send condolence cards when patients die, and there was one week after the pandemic hit when this stack of cards was 2 inches thick. These are people I’ve been taking care of for years, so it’s been devastating.

How has the pandemic affected the lives of caregivers for people living with dementia?

Dr Kotwal: Physical distancing restrictions created barriers to obtaining external or paid caregiver support for much of the pandemic, leading to burnout among family members and unmet functional needs. Services like respite care, adult day health centers, and other services, which were previously a lifeline to families, have been unavailable.

Panlilio: I would say the impact on caregivers has been mixed. In the beginning, many were able to spend more time and have more meaningful relationships with mom and dad, but now families are becoming exhausted and burnt out. Over time, it really wore on our caregivers, who experienced feelings of desperation and being overwhelmed.

As a program, one thing we were able to provide during the early part of the pandemic was counseling, because it was one of the only things we could do over Zoom. Also, support groups quadrupled in attendance from roughly 6-12 people to as many as 40 attendees.

What are some recommendations for how clinicians can best address these issues?

Dr Neel: Now that we are seeing lessened restrictions, it is important to encourage patients to begin returning to activities they used to do pre-pandemic. The pandemic is certainly not over, and we are currently seeing a rise in cases of COVID-19, highlighting the continued importance of adhering to strategies to lessen infection risk such as avoiding unmasked indoor gatherings and considering masking when around others even though mask mandates have been lifted. However, leaving the home 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 could do better with providing socialization and ties to the community. Patients with dementia, especially in the advanced stages, really need much more social engagement.

As patients get older, I think neurology colleagues need to talk more about quality of life and have patients enrolled in community-based organizations such as adult day centers and memory care centers. These are places that our patients can go where it’s safe and the staff are trained to take care of people just like them.

I’m concerned that a lot of these state-funded facilities are going to close. I know they’ve been understaffed and are struggling to provide services, and many nearly shut down earlier in the pandemic.

What else do you think is needed to buffer the effect of the pandemic on this patient population and their caregivers?

Dr Kotwal: Patients and families are in need of clinicians who can advocate for safe socializing and programs that can assist caregivers and help them recover from burnout experienced during the pandemic.

Panlilio: In addition to social recommendations and cognitive activities for patients, support for caregivers needs to be addressed because without them, patients are going to end up in nursing homes. More funding is needed for this because there is almost no support for caregivers, and the financial impact on them is severe.

We need to provide more support, but how? We need to figure out what we need to do as a society to provide more support for these caregivers.

References

1. Wang Q, Davis PB, Gurney ME, Xu R. COVID-19 and dementia: Analyses of risk, disparity, and outcomes from electronic health records in the US. Alzheimers Dement. Published online February 9, 2021. doi:10.1002/alz.12296

2. Gilstrap L, Zhou W, Alsan M, Nanda A, Skinner JS. Trends in mortality rates among Medicare enrollees with Alzheimer disease and related dementias before and during the early phase of the COVID-19 pandemic. JAMA Neurol. Published online February 28, 2022. doi:10.1001/jamaneurol.2022.0010

3. Numbers K, Brodaty H. The effects of the COVID-19 pandemic on people with dementia. NaPt Rev Neurol. Published online January 6, 2021. doi:10.1038/s41582-020-00450-z

4. Wei G, Diehl-Schmid J, Matias-Guiu JA, et al. The effects of the COVID-19 pandemic on neuropsychiatric symptoms in dementia and carer mental health: an international multicentre study. Sci Rep. Published online February 14, 2022. doi:10.1038/s41598-022-05687-w

5. Daley S, Farina N, Hughes L, et al. COVID-19 and the quality of life of people with dementia and their carers-The TFD-C19 study. PLoS One. Published online January 19, 2022. doi:10.1371/journal.pone.0262475