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    COVID, Community, and Living with Dementia

    By Dr. Marcy Adelman–

    Adriana Sanchez, Care Consultant for Family Caregivers Alliance (FCA), recently shared the following with me for the San Francisco Bay Times: “Peter, a gay man in his 80s, lives alone. He long ago lost contact with his family, and his friends have either died or moved away. Ben, a younger gay man in his 60s who lives nearby, has taken it upon himself to look in on his neighbor Peter. During COVID, Ben noticed something was going on with Peter when he seemed frequently confused and having memory problems. Ben called FCA for help. Peter needed more help than Ben could provide. I did an assessment over the phone. Peter needed help with house cleaning, cooking, food shopping, organizing doctors’ appointments, and help with his finances. FCA was able to help Ben make these arrangements for Peter.” (The names were changed to protect the individuals’ privacy.)

    FCA is a nonprofit online service for low-income seniors that provides support and resources for caregivers of adults with dementia and other chronic health problems. The nonprofit specializes in working with older adults with cognitive conditions.

    More than 80% of the care recipients Adriana works with are living with Parkinson’s, Alzheimer’s, or some other form of dementia. I asked her what changes she has seen in the people she serves since COVID in March of this year. 

    Adriana replied, “Most people are doing their best to cope. They are able to maintain their physical and mental health. Too many others, however, are having a harder time. In COVID we have seen an increase in caregivers feeling lonely and depressed. Many care recipients are struggling and declining. By that I mean, many care recipients with cognitive impairment are experiencing sudden declines in their ability to walk and/or to speak. Especially those who live alone.” 

    She added, “Most of the gay men we serve have limited friendship networks and don’t have any family connections. Most live alone. They do not have a group of friends to provide them with the ongoing emotional support and help they need. Isolation has emerged as the number one issue.”

    In March, FCA went from in-person services to virtual services. All of FCA’s support groups stopped meeting in person, including their LGBTQ caregivers support group, family caregivers support group, and Spanish-speaking support groups for caregivers of adults with chronic health problems. Other services care recipients may have been receiving, such as physical therapy and speech therapy, also went virtual.

    Adriana offered that “the increased difficulties with speaking we are seeing with care recipients with cognitive conditions may have to do with decreased opportunities for social interactions and the possibility that speech therapy on Zoom or phone are not an adequate replacement for in-person experiences. I am hoping at some point in the not too distant future that there will be enough COVID tests available that speech therapists and physical therapists can return safely to in-person home visits. With tests and proper safety procedures, we don’t have to wait for a vaccine.”

    I asked Adriana if non-LGBTQ caregivers and care recipients had similar issues as LGBTQ people. 

    She replied, “I am Mexican and bilingual. For the Latinx people I work with who are not LGBTQ, the number one issue is food insecurity. Many older Latinx care recipients also express feelings of loneliness to me. They usually are living with adult children who are working. A big pattern I see is that the parents don’t want to burden their children or friends with their concerns. We encourage and help them to share their feelings and concerns with their children. We can help with both these issues.”

    Shanti, an LGBTQ+ senior serving nonprofit, has a smaller percentage of program participants living with Alzheimer’s or Parkinson’s than FCA. Joanne Kipnis, Program Director of Shanti’s LGBTQ+ Aging and Abilities Support Network, describes her program as providing care navigation, client advocacy, emotional support, practical assistance, and social programming to LGBTQ+ older adults and LGBTQ+ adults living with disabilities. I asked her if she had seen any changes during the time of COVID in the few program participants with cognitive impairment in Shanti’s program.

    She replied, “We have noticed increased confusion and memory issues on our phone calls. Most of our interactions are now over the phone. Because of COVID, our volunteers and Care Navigators are not meeting with people in person. We have seen a shift in people’s abilities. Clients who are sheltering in place have limited connection with people. The lack of connection is isolating. There is an increase in emotional stress. We are seeing an increase in isolation, depression, and loneliness. That’s understandable. Their lives have been completely upended.”

    “Our program provides practical support, such as transportation to doctors’ appointments, food shopping, help paying bills, and light housekeeping,” Kipnis continued. “Our Care Navigators provide advocacy and referral. Our trained volunteers are matched with program participants. They meet weekly for emotional support, conversation and connection. Many of our program participants can’t join our virtual programming because they don’t have the essential devices, such as a computer, or they are unable to connect to the internet or find navigating Zoom too challenging.”

    It is hard not to be impacted by the stress of COVID, the social isolation of sheltering in place, and the dark and bizarre political chaos we are living through. It is understandable that people are having difficulty with isolation and mental distress under these conditions.

    Still, people are showing great resiliency and heart in these challenging times. The way community has stepped up to help those who are most vulnerable is inspiring. What is not understandable is the lack of testing, the lack of consistent safety guidelines, and the unmet needs of essential resources to keep people fed, safe, and connected to each other. What was needed and is still needed is a comprehensive federal plan. 

    For More Information

    Family Caregiver Alliance

    Shanti Project LGBTQ+ Aging and Abilities Support Network

    Dr. Marcy Adelman, a psychologist and LGBTQ+ longevity advocate and policy adviser, oversees the Aging in Community column. She serves on the California Commission on Aging, the Governor’s Alzheimer’s Prevention and Preparedness Task Force, the Board of the Alzheimer’s Association of Northern California, and the San Francisco Dignity Fund Oversight and Advisory Committee. She is the Co-Founder of Openhouse, the only San Francisco nonprofit exclusively focused on the health and well-being of LGBTQ+ older adults.

    Published on November 5, 2020