Isolation, Disruption and Confusion: Coping With Dementia During a Pandemic

The coronavirus has upended the lives of dementia patients and their caregivers. Adult day care programs, memory cafes and support groups have shut down or moved online, providing less help for caregivers and less social and mental stimulation for patients. Fear of spreading the virus limits in-person visits from friends and family.

These changes have disrupted long-standing routines that millions of people with dementia rely on to help maintain health and happiness, making life harder on them and their caregivers.

“The pandemic has been devastating to older adults and their families when they are unable to see each other and provide practical and emotional support,” said Lynn Friss Feinberg, a senior strategic policy adviser at AARP Public Policy Institute.

Nearly 6 million Americans age 65 and older have Alzheimer’s disease, the most common type of dementia. An estimated 70% of them live in the community, primarily in traditional home settings, according to the Alzheimer’s Association 2020 Facts and Figures journal.

People with dementia, particularly those in the advanced stages of the disease, live in the moment, said Sandy Markwood, CEO of the National Association of Area Agencies on Aging. They may not understand why family members aren’t visiting or, when they do, don’t come into the house, she added.

“Visitation under the current restrictions, such as a drive-by or window visit, can actually result in more confusion,” Markwood said.

The burden of helping patients cope with these changes often falls on the more than 16 million people who provide unpaid care for people with Alzheimer’s or other dementias in the United States.

The Alzheimer’s Association’s 24-hour Helpline has seen a shift in the type of assistance requested during the pandemic. Callers need more emotional support, their situations are more complex, and there’s a greater “heaviness” to the calls, said Susan Howland, programs director for the Alzheimer’s Association California Southland Chapter.

“So many [callers] are seeking advice on how to address gaps in care,” said Beth Kallmyer, the association’s vice president of care and support. “Others are simply feeling overwhelmed and just need someone to reassure them.”

Because many activities that bolstered dementia patients and their caregivers have been canceled due to physical-distancing requirements, dementia and caregiver support organizations are expanding or trying other strategies, such as virtual wellness activities, check-in calls from nurses and online caregiver support groups. EngAGED, an online resource center for older adults, maintains a directory of innovative programs developed since the onset of the COVID-19 pandemic.

This article was originally featured in Kaiser Health News, read more here.