Every 3 seconds, someone, somewhere, develops dementia (World Alzheimer Report, 2018). With predictions that 152 million people worldwide will be living with dementia by 2050, the importance of identifying ways to support individuals and their families is clear.
In a large UK-based study, subjective quality of life among people living with dementia was associated with psychological indicators such as loneliness (Clare et al. 2019). Defined as a mismatch between the quantity and/or quality of social relationships and an individual’s expectations, loneliness has been linked to poorer mental and physical health outcomes.
For older adults, determinants of loneliness include living alone, marital status, smaller quantity and/or poorer quality of social relationships, female gender, lower education level and physical health problems (Cohen-Mansfield et al., 2016; Yang, 2018). Although some studies exist that investigate loneliness among people living with dementia, their focus has been on loneliness as a risk factor for dementia and more rapid cognitive decline. What appears to be missing, is the inclusion of people with dementia in large-scale prevalence studies.
In Sweden, an early study found that out of 154 people living with dementia, 46% reported social loneliness, and 53% had experienced emotional loneliness (Holmén et al., 2000). More recently, a British study of 93 individuals with mild-to-moderate Alzheimer’s disease, found that, on average, participants did not report feeling lonely (Balouch et al., 2019).
In their recent study, Victor et al. (2020) aimed to establish the prevalence and determinants of loneliness among people living with dementia. They used data from a UK-based cohort study called the Improving the experience of Dementia and Enhancing Active Life (IDEAL), and therefore benefitted from a large sample.
Baseline data was analysed from 1,547 people living with dementia. Individuals were approached through 29 National Health Service (NHS) sites, and the following eligibility criteria were applied:
The current study presents self-reported information, collected via direct researcher interviews that were conducted over three home visits. To reduce participant burden, the 6-item De Jong Gierveld Loneliness Scale was used (De Jong et al., 2006). The short version was selected as a quick measure with a record of successful application in previous research involving people with dementia. Loneliness scores were grouped using De Jong’s predetermined categories (no loneliness, moderate loneliness, and severe loneliness).
Dementia-specific factors included the diagnosed dementia sub-type and participants’ baseline cognitive function. The following factors associated with loneliness in the general population were also assessed: age, sex, marital status, education and living situation i.e. living alone vs. living with others. Comorbidity of additional chronic health conditions, depressive symptoms, risk of social isolation, life satisfaction, wellbeing, and quality of life were measured using existing scales. Where possible, tools developed for older populations and people with dementia were utilised e.g. 10-item Geriatric Depression Scale, and the Quality of Life in Alzheimer’s Disease (QoL-AD) Scale.
Determinants of loneliness were identified by comparing factors across the three loneliness categories (none, moderate, and severe loneliness) using Chi-Squared tests for categorical variables and analysis of covariance for continuous variables. Multinomial logistic regression was conducted to identify significant factors that increased the risk of reporting moderate or severe loneliness compared with no loneliness.
Prevalence statistics were based on data from 1,445 participants that completed the loneliness scale. The mean age of the sample was 76 (SD = 8.6) and just over half of the participants were male. Alzheimer’s disease was the most common diagnosis among participants (55%), and 75% of the sample reported having an additional chronic health condition.
Around 30% of the sample were categorised as moderately lonely, and just over 5% severely lonely. Within the severe loneliness group, 39% lived alone compared to approximately 19% of the total sample. On average, those classified as severely lonely indicated higher risk of being socially isolated. Older age, living alone, being widowed, higher levels of depression and isolation, and lower levels of wellbeing, life satisfaction and quality of life were significantly associated with loneliness.
Less social isolation, as indicated by larger social networks, was associated with a lower risk of being moderately or severely lonely, and living alone related to risk of severe loneliness only. Higher depressive symptoms were associated with increased risk of both moderate and severe loneliness. In contrast, participants reporting better life satisfaction and quality of life had lower risk of moderate and severe loneliness respectively. Factors not found to be associated with loneliness included dementia sub-type and cognitive function, along with comorbidity, wellbeing, age, sex, education and marital status.
- Over a third of the sample reported feeling moderately or severely lonely
- Dementia-specific factors were not found to be associated with loneliness in the current study
- However, living alone, experiencing depressive symptoms, and being more socially isolated increased the risk of loneliness among people living with dementia.
Strengths and limitations
There are clear strengths to Victor and colleagues paper (2020), including the large sample size and a broad range of both dementia-specific and general population determinants. A completion rate of 93% on the loneliness scale also indicates that items were accessible for people living with mild-to-moderate dementia. However, due to a general lack of loneliness prevalence studies that include people with dementia, and the inconsistent use of measures, it was difficult to draw direct comparisons with previous research. The cross-sectional nature of the data also meant that the direction of associations between significant factors and loneliness could not be confirmed. For example, whether higher depressive symptoms predict loneliness or vice versa.
Implications for practice
Given the challenge of making direct comparisons across existing studies, future research should strive to assess loneliness in a consistent way, ensuring that measures are appropriate and accessible for people living with dementia. The lack of association between marital status and loneliness highlights the importance of assessing both structural indicators as well as perceptions of relationship quality. Finally, the use of longitudinal data that follows individuals living with dementia over time, can provide additional clarity on the direction of relationships between loneliness and associated factors.
Findings indicate that providing more support for individuals living alone, and at risk of social isolation, could help to reduce feelings of loneliness among people living with dementia. As an ongoing, longitudinal cohort study, IDEAL will provide opportunities to build on these findings, and inform policy for supporting people living with dementia and their carers. I really look forward to seeing what is next for the project!
Statement of interests
Beyond my research interests, I also have a personal interest in this paper. My lovely Nan was diagnosed with dementia last year. She has a wonderfully dedicated partner in my grandad, and my mum has been incredible in providing her support this year. I have therefore written this blog with my family in mind, as well as the many people living with dementia who sadly do not have a close support network.
Victor, C. R., Rippon, I., Nelis, S. M., Martyr, A., Litherland, R., Pickett, J., … & IDEAL programme team. (2020). Prevalence and determinants of loneliness in people living with dementia: Findings from the IDEAL programme. International Journal of Geriatric Psychiatry.
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