From social isolation to anxiety and depression, dementia patients and their caregivers have been burdened with more than just fear of getting sick during the pandemic.
More than six million Americans are living with Alzheimer’s dementia—a number that is estimated to rise to 13 million by the year 2050. The COVID-19 pandemic has posed a unique challenge for those with Alzheimer’s and other forms of dementia and their caregivers: Not only are dementia patients at a greater risk of getting infected and dying from COVID-19, but their mental health is also suffering.
To learn more about how the pandemic has impacted dementia patients and caregivers, we spoke with Dr. Susan Parks, director of the Division of Geriatric Medicine and Palliative Care at Thomas Jefferson University Hospital.
When it comes to dementia, there’s widespread misunderstanding about what it looks like. “Dementia is a term for thinking and memory problems that affect the ability to perform everyday activities. And once it sets in, there’s a trajectory from mild to severe symptoms—ultimately, dementia patients will require 24/7 care from friends, family, hired caregivers or a long-term care facility,” says Dr. Parks.
Dementia patients are more likely to suffer from other chronic conditions, such as heart disease, diabetes and kidney disease. In addition, a recent study found that dementia patients are more likely to contract COVID-19. This may be true because these patients have a greater occurrence of comorbidities. However, it could also be attributed to how those living with dementia have cognitive impairments inhibiting them from complying with COVID-19 safety measures such as mask-wearing, hand-washing and social distancing.
An Epidemic within a Pandemic
The COVID-19 pandemic did more than just pose a health risk for patients with dementia. Many long-term care facilities, home services and adult day programs shut down, leaving patients and their families in a tough situation. “The pandemic had a huge impact on care settings for dementia patients. One of the cornerstones of staying healthy with dementia is keeping the mind and body active, which is why resources like adult day programs are so important,” says Dr. Parks. “Those programs provide patients with a chance to participate in activities, have meals, socialize and have some semblance of independence from their normal lives—and they lost that during the pandemic.”
With widespread shutdowns and social gathering restrictions, dementia patients and their caregivers have been suffering from an epidemic of isolation and loneliness. “We’ve seen an increase in anxiety and depression and a lack of overall sense of wellbeing for many people,” says Dr. Parks.
Caring for Caregivers
Over 83% of help provided to dementia patients is from family, friends or other unpaid caregivers. COVID-19 only amplified that need for people to take on a support role for their loved ones with dementia.
“Caregivers are so essential to dementia patients, but many don’t get the respite needed to continue caring for both themselves and their loved ones,” says Dr. Parks. “There’s a high incidence of anxiety and depression among caregivers, so it’s important that they reach out for support and try to stay in touch with their own health. Caregivers need to take care of themselves to make sure they stay in good health and are in the best position to take care of others.”
Resources for Patients and Caregivers
Thankfully, there are resources for those who are suffering from dementia and their loved ones. The Alzheimer’s Association has a huge library of information online, a 24/7 caregiver hotline and a network of support groups—one of which is held by Jefferson Health’s Center for Healthy Aging.
Led by Judy Heredia, certified registered nurse practitioner, and Kelsey McCrann, behavioral health consultant, the caregiver support group has virtual meetings once a month. “Folks who are in a caregiving role have very different experiences—some are caregivers full time while others may be maintaining other jobs at the same time,” says Dr. Parks. “So in a support group, those people may pick up bits of information that are helpful or even hear about experiences that they can relate to from other caregivers.”
To make an appointment or sign up for a program with the Center for Healthy Aging, call 215-955-6664.