This is a plain English summary of an original research article
One-third of people with mild-to-moderate dementia experience loneliness. 30% are moderately lonely and 5% are severely lonely, reports one of the first major studies to look at the issue. These figures are comparable to the general population of older people.
People with dementia who live alone, and who experience social isolation, depression and lower quality of life are more likely to feel lonely. But researchers found no association between loneliness and dementia-specific factors.
Interventions that help people tackle depression and build more supportive relationships may help reduce loneliness.
What’s the issue?
Around 850,000 people in the UK are living with dementia and this figure is increasing. 120,000 of these people live alone.
It is thought that the COVID-19 crisis has had a huge impact on people with dementia, who rely on support from carers. Around 95% are over 65 and many have underlying health conditions. The lockdown period has resulted in face-to-face social care services being suspended and a fall in the number of care workers.
There has been little research into loneliness in people with dementia. Loneliness is a distressing emotion and a serious public health issue. Research links it to poor wellbeing, heart disease, stroke, depression, and cognitive decline and early death.
The authors wanted to find out how common loneliness is in people with dementia. They also wanted to identify the circumstances that made them feel more or less lonely. Focused interventions to identify and tackle loneliness could increase the wellbeing of this group of people.
The researchers used information provided by people with mild-to-moderate dementia involved in the Improving the Experience of Dementia and Enhancing Active Life (IDEAL) project. Most of the 1,445 participants had Alzheimer’s disease and at least one other chronic health condition.
Participants were interviewed in their homes on three separate occasions. They rated their feelings of loneliness, their mood and wellbeing. They also described how much social support they received from family and friends.
Researchers gathered information about age, sex, marital status, education level, and details of other chronic health conditions.
Around one-third of those surveyed (35%) reported feeling lonely: 30% reported feeling moderately lonely and 5% reported feeling severely lonely.
This is similar to loneliness in the general population of older people (around 30%). The proportion experiencing severe loneliness was also about the same as in the general population. Exact comparisons are not possible because other studies have used different approaches, such as different measures of loneliness.
Factors associated with loneliness were:
- living alone
- symptoms of depression
- lower quality of life
- social isolation.
Dementia-specific factors, such as the type of dementia or cognitive function, did not appear to be linked to loneliness.
Why is this important?
This study was one of the first to explore how common loneliness is in people living with dementia and identify factors that might increase it.
These findings suggest that loneliness for people with dementia is less of a problem than the researchers had suspected.
The authors urge caution in making policy recommendations on the basis of this preliminary research. However, they believe their findings suggest the need for a greater focus on tackling loneliness by helping people build more supportive relationships and addressing symptoms of depression.
These study findings cannot directly establish causes of loneliness. It is likely that living alone leads to loneliness, but it remains unclear whether depression and quality of life are causes or consequences of loneliness.
The IDEAL project will investigate these associations. It will also explore the surprising lack of link between loneliness and dementia-specific factors or marital status. IDEAL is following a large group of people over time and will be able to assess how loneliness changes for individuals in response to changes in their circumstances. This research could help identify those most at risk, and lead to the development of more personalised interventions.
IDEAL is conducting two further studies to examine the impact of COVID-19 on people with dementia.
You may be interested to read
The full paper: Victor CR, and others. Prevalence and determinants of loneliness in people living with dementia: Findings from the IDEAL programme. International Journal of Geriatric Psychiatry. 2020;1–8.
The Unfurlings, a creative project exploring what it means to live with dementia
The IDEAL project website with full details of the study and publications.
The INCLUDE project: an addition to the IDEAL programme exploring the impact of COVID-19 on people with dementia and their carers.
Recent research in collaboration with the IDEAL programmes research team: Alexander CM, and others. Does awareness of condition help people with mild-to-moderate dementia to live well? Findings from the IDEAL programme. BMC Geriatrics 2021;21:511
Funding: The IDEAL study was co-funded by Alzheimer’s Society and the Economic and Social Research Council (ESRC). It was supported by NIHR Dementias and Neurodegeneration Speciality (DeNDRoN) and Health and Care Research Wales.
Conflicts of Interest: The study authors declare no conflicts of interest.
Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.