Loneliness in Neurodegenerative Diseases
Research type
Research Study
Full title
Loneliness and social isolation in neurodegenerative diseases with an early deficits of social functioning
IRAS ID
314941
Contact name
Roger Barker
Contact email
Sponsor organisation
Cambridge University Hospitals NHS Fundation Trust and The University of Cambridge
Duration of Study in the UK
2 years, 3 months, 30 days
Research summary
Throughout the human evolution social belonging has been essential to survival. Loneliness has therefore been considered as a signal, akin to hunger and pain, when social needs are not met to avoid the dangers associated with social isolation. It is therefore related to great mental and physical stress and ultimately poor health and higher morbidity. In western countries loneliness is developing to be one of the major health challenges with 10-20% of the adult population affected. These numbers do further increase in individuals with mental/physical disabilities. Specifically in neurodegenerative diseases loneliness has been identified as one of the major risk factors of developing Alzheimer’s disease in later life. However, very little attention has been paid to loneliness after a neurodegenerative disease has developed and loneliness in rarer neurodegenerative diseases, such as Huntington’s disease, progressive supranuclear palsy, and frontotemporal dementia. This is of relevance as it is likely that prevalence of loneliness increases post disease onset whereas the need for social support will increase due to a gradual loss of independence. Additionally, those three diseases are associated with an early loss of social functioning and we hypothesis that those social deficits will further increase vulnerability towards social isolation and loneliness.
The current project will employ online questionnaires to explore loneliness and social isolation in individuals with Huntington’s disease, progressive supranuclear palsy, frontotemporal dementia, and Parkinson's disease, which will further be related to assessments of social functioning. This will be the first study to investigate loneliness and social isolation after disease onset and will provide further insight into how those problems are related to changes in social functioning. Using an online based approach will allow us to reach individuals who are not integrated in a clinic or research setting and might therefore be particularly vulnerable.REC name
London - Dulwich Research Ethics Committee
REC reference
22/PR/1148
Date of REC Opinion
6 Oct 2022
REC opinion
Further Information Favourable Opinion