The global crisis of loneliness

Hannah O'Rourke

Hannah O’Rourke leads the CONNECTing for Quality of Life research program at the University of Alberta to design, evaluate and disseminate interventions that improve feelings of social connection and quality of life for people living with dementia and their family, friends and caregivers. She is also a registered nurse and assistant professor in the Faculty of Nursing. She completed her BScN (honors) and PhD in nursing at the U of A, and a postdoctoral fellowship at Toronto Metropolitan University.

O’Rourke is running three streams of studies through CONNECT-QoL that focus on interventions that address loneliness and social isolation in people living with cognitive impairment in care homes. 

Connecting Today is a personal-contact intervention program funded by The Alzheimer Society Research Program and the Canadian Institutes for Health Research. “It’s a facilitated remote-visiting program designed to support the person living with dementia in a care home to have engaging video calls with their family member or friend who’s outside the care home,” explains O’Rourke. “What’s novel is the emphasis on the facilitator component of it to include people living with moderate to severe dementia.” 

Previous studies have focused on the resident being able to use the technology independently. “The background work we did to adapt these programs specifically for people living with dementia highlighted how important it is to have a facilitator to support that interaction,” says O’Rourke. “Our feasibility work has found that not only is the facilitator providing support to the person living with dementia, but they’re also providing social support to the family members or friends.”

Music Connects Us is a music-based group activity program run by skilled community-based musicians and funded by the Kule Institute for Advanced Studies and CIHR. “What makes this program interesting,” says O’Rourke, “is that it’s based on supporting the person living with dementia in a care home to engage with their family members and friends in creating music together. But by bringing in people from the community, it’s also about breaking down the physical boundaries of the care home and potentially addressing stigma.” 

People living with dementia in care homes receive fewer than half the number of visits of those living with dementia outside of care homes. This may be due to a stigmatized perception that the person is no longer benefiting from visits, or the visitor may have challenges engaging within a care-home environment. “We want to see if this program can be a way to support family members and friends to have a different experience with the person living with dementia within that environment,” says O’Rourke.

My Tools 4 Care - In Care is a web-based psycho-educational intervention designed to support the family or friend of the person who’s living with dementia in long-term care. It is funded by the Public Health Agency of Canada. In work that O’Rourke co-lead with Dr. Wendy Duggleby, and developed in collaboration with the Alzheimer’s Society of Alberta and the Northwest Territories, the toolkit contains links to a variety of activities, information about the disease and what to expect, and other resources for carers. 

As an example, the research team developed some videos to describe their findings from qualitative interviews with carers. “This resource (among others) lets the family member or friend see themself in someone else’s story,” says O’Rourke. “It’s emotional support because they hear about what other people have been through and they can relate to that.”

The need for further research

The World Health Organization states that loneliness and social isolation are widespread and increasingly being recognized as a priority public health problem and policy issue affecting roughly one in four older people. 

“There are a lot of associations between loneliness and social isolation in older people — whether cognitively compromised or not — and health implications such as an increased risk for dementia, more rapid decline, depression and even mortality,” says O’Rourke. 

A recent study published in The Lancet Healthy Longevity, Social connection and end-of-life outcomes among older people in 19 countries: a population-based longitudinal study, found that on average, older people experienced increased loneliness towards the end of life, and that it was a predictor of symptoms such as pain, breathlessness and anxiety or sadness. 

O’Rourke points out in her response to the study, also published in The Lancet Healthy Longevity, that people with cognitive impairment have been excluded from this study, and most intervention studies that address loneliness among older adults and care-home residents. “One of the challenges of including them is the lack of measures that have been specifically developed to assess loneliness of people living with dementia,” she explains. 

“Such exclusions can perpetuate inequities in health care and a lack of understanding of the distinct causes and consequences of loneliness for those at highest risk,” says O’Rourke. “It’s led to a really big gap in what we know about how we can support people living with dementia or other forms of cognitive impairment to address their loneliness.”

The role of nurses and other health-care professionals

Understanding the impacts and mechanisms of loneliness and social isolation can help nurses and other health-care professionals improve patient outcomes by addressing these issues in their care of patients and offering more holistic approaches to health-care delivery.

“Care-home practices continue to be task-based, focused on people’s physical needs and getting through the schedule for the day in a very resource-stretched setting,” says O’Rourke. “But we need to continue to do more in care homes around things like person- and relationship-centred care. We need to make care homes less institutionalized, less medicalized, more home-like with a focus on relationships.”

“We have ways of supporting people that look promising” says O’Rourke, “but we still lack clear guidance on effective, tailorable interventions for use with a diverse population of people living with dementia. People are all different; there is no one intervention or approach that will work for all.”

Related: