Addressing Social Isolation and Loneliness Among People Living with Dementia and Their Caregivers

As Aristotle once noted, humans are social animals. We are learning more about how true that is biologically. Building and maintaining relationships with others is not only good for, but perhaps critical to, our mental and physical health. The opposite is also true. Recently, the U.S. Surgeon General called social isolation and loneliness an “epidemic” and “profound threats to our health and well-being.” Despite being noted public health concerns before the COVID-19 pandemic, the negative impact of social isolation and loneliness was amplified when people’s ability to physically gather and meaningfully connect were limited. 

Older adults are at increased risk for social isolation and loneliness because they are more likely to live alone, have lost family and friends, be diagnosed with a chronic illness, and experience impairments of their senses, such as hearing loss. In the United States, nearly a quarter of community-dwelling adults aged 65 years and older are socially isolated, and 43% of adults over age 60 report feeling lonely.

Dementia and social isolation and loneliness influence each other. People experiencing social isolation and loneliness are at a higher risk of cognitive decline and may experience worsened dementia symptoms. At the same time, approximately one-third of people living with dementia report feeling lonely, and two-thirds of people living alone with dementia report feeling isolated. Living with or caring for someone with dementia can also increase the risk of social isolation and loneliness. Over 40% of dementia caregivers report experiencing at least moderate levels of loneliness and social isolation. 

Dementia has a unique impact on the people living with it and their caregivers, which can influence whether or not they experience social isolation and loneliness. Dementia symptoms such as difficulty remembering important events or people, or behavioral changes can cause people living with dementia to withdraw socially. Caregivers for people living with dementia may be overwhelmed by their role, especially as symptoms progress. Feelings of loss and grief can also impact a caregiver’s ability or willingness to reach out to others. All of these challenges can cause the social support networks of people living with dementia and their caregivers to shrink. 

Resources are available for those who wish to address social isolation and loneliness for people living with dementia and their caregivers. Grantees from the Administration for Community Living’s Alzheimer’s Disease Programs Initiative (ADPI) have considerable experience doing this work. The National Alzheimer’s and Dementia Resource Center’s new publication, Addressing Social Isolation and Loneliness of People Living With Dementia and Their Caregivers, provides insight into the unique impact of dementia on social isolation and loneliness, specific examples of promising programs that can be used to help address the related challenges, and tools to measure the impact of programs. Additional resources and specific examples of the work done by ADPI grantees are also included in the paper, along with tips for sustainability. Some of the most common and promising types of programs to address the challenges of social isolation and loneliness include group-based support and learning, arts-based interventions, friendly visitor and call programs, and respite. 

Group-based support and learning can help build acceptance of the diagnosis among participants and increase feelings of belonging. Other common objectives include improving knowledge or skills and providing opportunities for enjoyment and stimulation. Group activities can be formal interventions or less structured gatherings. Examples include support groups, education or training, and memory cafés. Groups can be clustered based on shared interests and experiences.

Arts-based programs can have positive outcomes for people living with dementia and their caregivers, including increased feelings of social inclusion, engagement, and self-esteem; reduced feelings of depression; and improved overall well-being and quality of life. While there are many options, arts-based programs generally fall into the categories of performing arts, literary arts, and visual arts.

Friendly visitor and telephone reassurance programs offer older adults, including people living with dementia, opportunities for one-on-one social interaction by providing them with a visit or brief check-in from a volunteer. Friendly visits focus on increasing social interactions to decrease loneliness and depression for people living with dementia, as well as improve perceived social support for caregivers. 

Respite programs not only provide short-term relief to caregivers, but also provide people living with dementia an opportunity for meaningful engagement and connecting with others. Day programs, specifically, have been associated with reduced social isolation for people living with dementia. Any form of respite can help caregivers renew interests they had before they took on caregiving responsibilities, leading to reduced social isolation.

Community-based service providers are well positioned to provide person-centered programs to address social isolation and loneliness for people living with dementia and their caregivers. There is no one-size-fits-all solution, and programs that address social isolation and loneliness should be carefully considered based on the needs of the community. Addressing Social Isolation and Loneliness of People Living With Dementia and Their Caregivers provides examples that can be used by others when trying to do this work.

Learn more about RTI’s work in Alzheimer’s and related dementias.