Impact of COVID-19 on 'Living Well' with Mild-to-Moderate Dementia in the Community: Findings from the IDEAL Cohort

Clare, Linda; Martyr, Anthony; Gamble, Laura D.; Pentecost, Claire; Collins, Rachel; Dawson, Eleanor; Hunt, Anna; Parker, Sophie; Allan, Louise; Burns, Alistair; Hillman, Alexandra; Litherland, Rachael; Quinn, Catherine; Matthews, Fiona E.; Victor, Christina

Abstract

Background: Negative impacts of the COVID-19 pandemic on people with dementia have been widely-documented, but most studies have relied on carer reports and few have compared responses to information collected before the pandemic. Objective: We aimed to explore the impact of the pandemic on community-dwelling individuals with mild-to-moderate dementia and compare responses with pre-pandemic data. Methods: During the second wave of the pandemic, we conducted structured telephone interviews with 173 people with dementia and 242 carers acting as informants, all of whom had previously participated in the IDEAL cohort. Where possible, we benchmarked responses against pre-pandemic data. Results: Significant perceived negative impacts were identified in cognitive and functional skills and ability to engage in self-care and manage everyday activities, along with increased levels of loneliness and discontinuity in sense of self and a decline in perceived capability to 'live well'. Compared to pre-pandemic data, there were lower levels of pain, depression, and anxiety, higher levels of optimism, and better satisfaction with family support. There was little impact on physical health, mood, social connections and relationships, or perceptions of neighborhood characteristics. Conclusion: Efforts to mitigate negative impacts of pandemic-related restrictions and restore quality of life could focus on reablement to address the effects on participation in everyday activities, creating opportunities for social contact to reduce loneliness, and personalized planning to reconnect people with their pre-COVID selves. Such efforts may build on the resilience demonstrated by people with dementia and carers in coping with the pandemic.

Citation

Clare, L., Martyr, A., Gamble, L. D., Pentecost, C., Collins, R., Dawson, E., Hunt, A., Parker, S., Allan, L., Burns, A., Hillman, A., Litherland, R., Quinn, C., Matthews, F. E., & Victor, C. (2022). Impact of COVID-19 on 'Living Well' with Mild-to-Moderate Dementia in the Community: Findings from the IDEAL Cohort. Journal of Alzheimer's Disease, 85(2), 921-936. https://doi.org/10.3233/JAD-215095

• Journal Article Type: Article
• Acceptance Date: Oct 27, 2021
• Online Publication Date: Jan 18, 2022
• Publication Date: Jan 1, 2022
• Deposit Date: Mar 30, 2024
• Publicly Available Date: Apr 3, 2024
• Journal: Journal of Alzheimer's Disease
• Print ISSN: 1387-2877
• Electronic ISSN: 1875-8908
• Publisher: IOS Press
• Peer Reviewed: Peer Reviewed
• Volume: 85
• Issue: 2
• Pages: 921-936
• DOI: https://doi.org/10.3233/JAD-215095
• Keywords: Alzheimer’s disease; Quality of life; Services; Well-being
• Public URL: https://hull-repository.worktribe.com/output/4451045
• Related Public URLs: https://eprints.ncl.ac.uk/277875