Supporting People Living with Dementia During COVID-19

Co-morbid conditions and cognitive decline put people living with dementia at high risk of COVID-19. Even people in the earliest stage of dementia were challenged with what it took to protect oneself—a mask, increased hygiene measures and social distancing. For people with dementia, the unintended consequences of COVID-19-imposed isolation were increased loneliness, agitation and depression. The pandemic disrupted routines in care and essential programs and services designed to decrease social isolation and safeguard people with dementia.

Typically, people with dementia experience increased social isolation as the disease progresses. They gradually lose the ability to initiate social interactions and to express the desire to interact with others. Over time, significant effort may be required to find social activities that meaningfully engage people with advanced dementia. This can lead to a reduction in social bonds. Studies have shown that caregivers of people with dementia face similar social isolation and reduced social interactions.

Home- and Community-Based Services

Approximately one in five adults older than age 65 has probable or possible dementia. The majority of people with dementia (70 percent to 80 percent) live at home (most with family or other informal caregivers), but a significant percentage live alone in the community. Without people in the home to observe changes in health, early symptoms of conditions such as COVID-19 and changes in a person’s cognitive and functional abilities may go unnoticed until an emergency occurs.

Prior to the pandemic, most social service programs for people with dementia were provided in-person. Due to COVID-19, most providers suspended such in-home services and case managers and care coordinators provided only phone or Internet-based services. In some communities, service providers offer check-in calls or videos or even in-person wellness checks for individuals they had been serving prior to COVID-19.

Adult Day Centers

Adult day centers provide nutrition, socialization, exercise and, in adult day health programs, a full range of health and preventive care services. Nearly 40 percent of participants have a diagnosis of Alzheimer’s disease or dementia and require assistance with multiple activities of daily living and can need supervision and redirection due to wandering behaviors.

For caregivers, these programs provide several hours of respite per week, often allowing caregivers to remain in the workplace. But adult day services programs closed due to restrictions. Nevada was the only state that immediately defined adult day services as an essential service, allowing providers who could remain open with adequate staff and safety measures to do so.  

In March 2020, Ohio’s adult day centers closed. Salli Bollin, executive director of MemoryLane Care Services in Toledo, said Ohio’s adult day service providers immediately began working to provide online or telephone-based programming to their clients. However, these home-based programs require caregiver supervision and engagement. Caregivers who had been in the workplace were no longer able to keep their schedules and became isolated with their care recipients in the home.

Some families made the difficult decision to place their loved ones in nursing homes, despite the known risk of COVID-19 transmission, because they were unable to provide for their loved ones’ growing medical needs.

In August 2020, the state of Ohio was approved for a Medicaid amendment to their 1915(c) Waiver, allowing for adult day services to be provided in-person or remotely. These are mainly one-on-one services, such as transportation to and from medical appointments, meaning few persons with dementia are reached daily. Ohio began allowing a phased-in approach to opening as of Sept. 2020, with new COVID-19–related social distance and hygiene requirements. 

In the case of people with dementia hospital visitation restrictions introduce myriad practical and emotional issues.

As facilities reopen, they will see participants who have been without services for months. Their symptoms likely will be more pronounced, due to lack of socialization, daily or weekly healthcare monitoring and programming aimed at reducing challenging behaviors. Some facilities have closed permanently, as they were unable to pay rent or provide continuity of management-level staff through the pandemic. Facilities also must rely upon dementia-trained staff to be able to return to work after months away, when they may have found employment elsewhere.

ACL’s Alzheimer’s Disease Program Initiative Funded Projects

The Administration for Community Living (ACL) program grantees found innovative ways of serving people living with dementia and their caregivers, including providing evidence-based interventions during the COVID-19 experience.

In Milwaukee, Wisc., United Community Center’s (UCC) Mobile Memory Clinic offers the only memory disorders clinic in the state specifically serving Latino adults with Alzheimer’s disease and related dementias. Typically, a team of providers from the mobile memory clinic visits clients in their homes to conduct assessments and educate family members in providing care and support. To continue assessments during the pandemic and protect client and staff safety, UCC adopted a telemedicine platform called A separate platform, Doximity, allows the UCC team to send and receive HIPAA-secure faxes needed to conduct geriatric assessments. Because the records are delivered through the platform, UCC staff can review the incoming documents on their laptops at home without going into the office.

The Ventura County, Calif., Area Agency on Aging’s program line-up has expanded to include a specialized case management team for people with dementia. The complexity of obstacles facing clients increased throughout the COVID-19 crisis. Isolation and depression paired with difficulties securing help with chores, food, and transportation are among some of their most recent challenges. The program’s social worker is meeting those challenges with weekly, and sometimes daily, wellness checks via phone. In addition, the program social worker is conducting in-person porch visits, allowing a wellness check while maintaining a safe 6-foot distance. These porch visits may be the only social connection the clients receive, and the visits provide an opportunity to assess a client’s overall well-being, while serving as a source of much-needed social interaction.

Long-term Care Facilities  

Nearly 50 percent of nursing home residents and just more than 40 percent of residential care community residents have Alzheimer’s disease or related dementia. Considering that residents with dementia and other chronic conditions live in congregate facilities with staff and residents moving room to room, it is not surprising to hear of many COVID-19 cases and deaths in long-term care facilities.

The image of an older adult looking out the window at family who cannot enter the facility will be an iconic reminder of the COVID-19 pandemic, but what do we not see beyond the windows? Even in the early days of the pandemic, advocates were acknowledging that long-term care providers were facing pressing concerns to keep residents safe, to find effective means to communicate and to balance staff availability. Increased testing and fewer visitor and movement restrictions will allow for a pseudo return to normal; however, the extended period of communication difficulties, restricted movement and decreased social interactions may mean accelerated declines for people living with dementia.

Healthcare and Hospital Care

The importance of telehealth was solidified with the COVID-19 pandemic with primary care visits and even physical therapy and occupational therapy sessions occurring online. However, Jeff Klein of Nevada Senior Services, which has a program specializing in care transitions for people with dementia, describes his clients with non-COVID-19 healthcare concerns as being “socially isolated and service-deprived.” To protect them from exposure or because of provider-network restrictions, families may keep such clients from routine medical care.

Visitor restrictions in hospitals are in place to limit the spread of COVID-19, but in the case of people with dementia these restrictions introduce myriad practical and emotional issues. Family and friends face challenges in assuring that the individual gets needed care, and the hospital staff are challenged with information-gathering, in-hospital compliance and planning for discharge. These issues are magnified because the caregiver is not allowed in the hospital. In addition, hospitalized people with dementia may experience increased confusion and delirium, which can contribute to a longer-term hospital stay and extend the time separated from family and friends.  

The COVID-19 pandemic is teaching all of us lessons, and a key lesson has been how we continue to support people with dementia. Providers who promptly sought to collaborate and follow best practices in care have demonstrated the essential services and approaches needed during this time. Questions will linger on how facilities and program delivery will happen when indoor spaces reopen, how to enhance the use of telehealth and whether the pandemic will contribute to an increased number of dementia diagnosis. There have been few silver linings to the pandemic, but we can apply the lessons learned to our day-to-day support of people and families living with dementia.

Heather L. Menne, PhD, is a senior health policy researcher and Kate Gordon, MSW, is a health policy analyst at RTI International, Washington, DC.