Social isolation and loneliness gained attention during the COVID-19 pandemic and with a US Surgeon General’s advisory released last year, leading to new programs and ways to address the public health concern in older adults, particularly those living with dementia.
During Tuesday webinar hosted by the National Alzehimer’s and Dementia Resource Center, or NADR, the Administration for Community Living, or ACL, and RTI International, experts discussed the effects of dementia on social isolation and loneliness, as well as programs such as Memory Cafes to combat those issues in people living with dementia and their family caregivers.
Referring to a 2023 ACL and NADR report on addressing social isolation and loneliness in people living with dementia and their caregivers, Melissa Hunter, an RTI International researcher, said that social isolation and loneliness are more widespread than other health issues, including smoking, diabetes and obesity — almost a fourth of older adults reported feeling socially isolated, and 43% of adults aged more than 60 years reported feeling lonely.
Hunter called those statistics “alarming,” because social isolation and loneliness are associated with premature death, risk of dementia, heart failure, stroke and hospitalizations. In addition, the cost of care is higher for lonely or socially isolated individuals, with Medicare spending more than $65 billion annually because of social isolation.
Looking at social isolation and loneliness through a dementia-specific lens, Hunter said that people who are socially isolated are at a 50% greater risk of developing dementia compared with others. And people who are lonely are three times as likely to develop dementia.
Social isolation also can accelerate dementia symptoms, increase feelings of depression and decrease quality of life, she said, adding that experiences that can exacerbate social isolation and loneliness include receiving a dementia diagnosis, ongoing dementia symptoms and deterioration of communication and relationships with others.
“There are a lot of things unique to dementia that make social isolation and loneliness even more of a challenge,” Hunter said, adding that more than 40% of dementia caregivers experience moderate to severe social isolation and loneliness.
Person-centered care, she said, is critical and should be based on an individual’s preferences and strengths. Other considerations include how a program is accessed — whether in person or virtually — location and technology requirements.
Memory Cafes: Support without stigma
Hunter mentioned five types of program aimed at addressing social isolation and loneliness in dementia, including group-based support and education (support groups and Memory Cafes, for example), arts-based programs (performing, literary and visual arts programs offering engagement), friendly visitor and call programs from volunteers, respite programs (such as adult day programs) and care consultation, which are more comprehensive than general education programs and target personalized goals.
Terri O’Herron, Dementia Hub director at Oakwood Creative Care, a nonprofit adult day club and dementia support organization in Mesa, AZ, shared information on establishing a Memory Cafe.
Memory Cafes provides free opportunities for socialization, support groups for caregivers and engagement of people with dementia in a safe space, she said.
Creating a successful Memory Cafe, O’Herron said, includes identifying a lead organization to partner with, establishing a dedicated task force or group of volunteers, identifying a space for the cafe, and creating a warm and welcoming environment. She also recommended finding donations for supplies and coffee and treats, creating a resource list for caregivers, marketing continuously through flyers and social media, and visiting other memory cafes to learn best practices.
Both people living with dementia and their caregivers receive multiple benefits from attending a Memory Cafe, including connecting with others on the same journey, gathering in a safe place with no stigma, building friendships, accessing weekly support and building hope, O’Herron said. And the most important thing is that it’s all at no cost to attendees, she added.
