Evidence
Alert

Loneliness in people with dementia is linked to social isolation and depression

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. Focussed interventions to identify and tackle loneliness could increase the wellbeing of this group of people.

What’s new?

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.

What’s next?

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.

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.

Commentaries

Study author

Our key finding – that people with dementia were no more likely to be lonely than their peers – was unexpected. We were also surprised by the relative unimportance of dementia-specific factors. We need to see if this changes over time as we follow this group.

The study highlighted isolation as a risk factor, which suggests that people with dementia lose contact with their broader social networks. This could be because their friends and family have declining health, there could be stigma or embarrassment because of dementia, or difficulties in maintaining contact (such as using phones).

This suggests that ‘dementia-friendly initiatives’ could place more emphasis on helping people with dementia maintain their social relationships and links with their local community.

Christina Victor, Professor of Gerontology and Public Health, Brunel University London

Health Psychologist

When policies on social contact are introduced, people with dementia need to be considered.

During the COVID-19 pandemic, all over-70s in the UK were asked to self-isolate. Prevalence of dementia increases with age and therefore many people with dementia have been in isolation. Unless these people had a significant co-morbid condition, they were not eligible for the additional support provided for the ‘extremely vulnerable’. No particular consideration has been given at a policy level to the adverse impact of isolation on people with dementia.

Georgina Charlesworth, Consultant Clinical & Health Psychologist, North East London NHS Foundation Trust and Associate Professor, University College London.

Conflicts of Interest

None declared.