Feature Issue on Loneliness and People with Intellectual, Developmental, and Other Disabilities
Loneliness as We Age
Several research studies have shown that older people with disabilities experience loneliness at a higher rate than people without disabilities, and even a higher rate than younger people with disabilities. Compared with people without disabilities, they have very different employment and retirement experiences, living arrangements, family makeup, and social relationships. All of these differences may contribute to the loneliness they feel, but most have not been formally researched. It’s important to remember that loneliness is different than being alone or isolated. You can be lonely in a crowded room, for example, or if you want more social relationships than you have. Researchers found that where people live plays a big role in whether they feel lonely. If someone with disabilities lives in a group home with people who frighten him or her, for example, they are more likely to report that they are lonely. One group of Australian colleagues supported older workers in sheltered workshops to join a mainstream community group as they approached retirement. Over six months, there was no improvement in their loneliness, but there was a significant improvement in their ability to make friends and have others to talk with. This research shows promise for offering a positive pathway to gradual transition to retirement.
As people with intellectual and/or developmental disabilities (IDD) age and transition to retirement, it is important to address both loneliness and isolation. Loneliness is subjective and involves an unpleasant feeling of disconnection from others, along with a wish for additional, or more satisfying, relationships. Social satisfaction involves having friends and people to talk to. Examples from the Modified Worker Loneliness Scale, a self-reported assessment created to measure loneliness in people with intellectual disability (ID), include:
Loneliness: Are you lonely? Do you feel left out of things? Is it hard to get people to like you?
Social satisfaction: Do you have people to talk to? Can you find a friend when you need one? Are there people you can go to when you need help?
Changes in one construct do not change the other. Overcoming social isolation is clearly necessary but may not be sufficient to prevent loneliness. Evidence indicates that loneliness is often difficult to change but social satisfaction can be altered. The subjective nature of loneliness requires asking individuals about their own experiences because the perceptions of family and caregivers are often inaccurate. Studies have shown only weak agreement between self-reports of loneliness and proxy reports about that person’s experience of loneliness. All the research discussed in this article assessed loneliness by directly asking individuals about their experience.
Aging and Loneliness
Few studies have examined the nature and extent of the loneliness experienced by people with IDD at different ages throughout adulthood. Nonetheless, in a 2007 study with colleagues from the University of Minnesota published in Intellectual and Developmental Disabilities (https://doi.org/10.1352/1934-9556(2007)45[380:LALA]2.0.CO;2 ), we found that 50% of U.S. adults with ID reported being lonely sometimes or often. This seems like a very high rate of loneliness and clearly represents a major problem, but it does not show how their experience compares with individuals without disability. More recent research in the United Kingdom and Australia, including a report in the journal BMC Public Health (https://doi.org/10.1186/s12889-024-17936-w ), found that many more people with any disability report being lonely compared with people without disabilities.
The disparities in loneliness between adults with and without IDD may well relate to their different circumstances. Their life experiences often differ substantially in domains such as employment, retirement, living arrangements, having a partner, having children or grandchildren, community participation, and social relationships. Disability or the death of parents is experienced by all, but the emotional and practical effect on older adults with IDD likely is more profound because many live with and depend on their parents into middle age and beyond. All these factors may well be linked to the loneliness they experience, but most have not been researched in detail.
One issue that affects older adults with IDD concerns the type of companions who accompany them to mainstream community groups and religious services. In a 2023 study published in Intellectual and Developmental Disabilities (https://doi.org/10.1352/1934-9556-61.4.326 ), University of Minnesota colleagues and I found that across different adult age groups, there is a marked change in the identity of these companions. Family members are overwhelmingly the main companions for young adults, but in older age, most people attend with paid staff. The natural support that families can provide in social settings because of their shared interests or religious backgrounds in the case of spiritual groups, for example, can be difficult for professional caregivers to replicate if they aren’t already part of those groups. Further, when eventually moving out of the family home, if the older adult with IDD has moved away to access disability housing, their established social connections at community groups and religious services will likely be lost. This factor may partly explain the lower percentage of older adults with ID who attend inclusive religious services compared with younger age groups. This counters trends in the general community of older people being more actively involved in religion.
Another important issue is health and aging. People with IDD experience poorer health than do their peers without disability, including age-related mobility issues, which limit opportunities for social connections and relationships. This contributes to both social dissatisfaction and loneliness.
Bullying, ridicule, and exclusion that is experienced by people with IDD across the lifespan also contributes to loneliness. In a 2022 study published in the Journal of Intellectual & Developmental Disability, Australian adults in their mid-20s to 70s reported these negative experiences.
“Saying hello to somebody they don’t want to know me because of my disability. I go and say hello to her, and [she] puts me down” one participant said in that study (https://doi.org/10.3109/13668250.2022.2112510 ). Some participants were in secure relationships and said this helped with loneliness. For many others, feelings of being insecure or unsafe (e.g., being picked on, ridiculed or bullied) were often experienced as loneliness and rejection.
Avenues for Intervention
Researchers have identified several factors that are associated with loneliness. Addressing them in ways that are important to older people with IDD could be helpful. One critical area relates to the social aspects of someone’s living arrangement. For example, in a 2007 examination of self-reported loneliness, my colleagues and I found that individuals who felt unsafe at home also often reported being lonely (https://doi.org/10.1352/1934-9556(2007)45[380:LALA]2.0.CO;2 ). A person’s worries about safety in settings such as group homes can arise due to relationship difficulties with co-residents (e.g., being bullied). Choosing with whom you live is linked to less loneliness, as colleagues and I found in work published in 2009 (https://doi.org/10.1352/1934-9556-47.2.63 ), presumably because people select roommates with whom they get on well. Ensuring choice of living companions could well reduce loneliness.
Among U.K. working-age adults with and without disabilities, Eric Emerson and colleagues (https://doi.org/10.1186/s12889-023-17481-y ) found risk factors for persistent loneliness were having no employment, being disabled, financial difficulties, not living as a couple, living in rental housing, and being female. These factors have not all been specifically linked to loneliness in people with IDD, but it is notable how many of these factors apply to most adults with IDD.
Because not having a job is a risk factor for loneliness among people with and without disabilities, loneliness in retirement must be addressed. People with IDD will need support to reach out to co-workers before retiring so they can stay connected. Likewise, support helps retirees to find new community activities and make new friends. They may also need financial counseling in order to adjust to an income shift that could affect their ability to participate in activities.
Companion Animals
Having a pet provides companionship at home that may reduce loneliness and could be particularly important for older people as mobility issues begin to affect how often they leave their homes. Going out with a dog increases social interactions with other community members. Australian researcher Emma Bould and colleagues from La Trobe University (https://doi.org/10.1111/jir.12538 ) compared going out in one’s local community with and without a dog. Those with a dog had more than twice as many pleasant social encounters with other people in their community. As one participant Lauren said, “People are friendlier when you have a dog.” Unfortunately, the researchers also noted that few people with IDD living in community settings with staff support have a pet[8] (https://doi.org/10.1111/jir.12538 ).
A man with gray hair, wearing a red shirt and white cap, leans over several potted plants, with other people in the background.
A man with gray hair wearing a blue cap stands in front of a row of potted plants in a nursery.
Still shots from Transition to Retirement, a video made in Sydney Australia in collaboration with Ability Options as a companion to the author’s 2013 book Transition to Retirement: A Guide to Inclusive Practice.
Interventions Among Older People
With my Australian colleagues, I supported older workers in sheltered employment to join a mainstream community group as they approached retirement. The idea was to drop a day of work each week and instead go to a community group with activities of interest to the individual. Over six months, we found no change in loneliness, but a significant improvement in social satisfaction (having friends and people to talk to). These findings were encouraging but also showed that loneliness is hard to modify. This may have been due to the participants only going to their community group for a few hours each week, with the rest of their week unchanged. Even so, this research offers a positive pathway to gradual transition to retirement. There is no sudden loss of social connections at work, because the person continues to work part time. At the same time, they develop relationships and meaningful activities outside of work, which help prepare for an easier transition to full retirement.
Creating more opportunities for older adults with disabilities to connect with people and activities in their communities as they age is critical to improving their health and well-being.