ABSTRACT
Background: Informal caregivers may experience high levels burden. Prior to COVID-19, loneliness and social isolation, and especially the discordance between them, were recognized for rapid aging-related cognitive decline. The COVID-19 has significantly increased social isolation and loneliness in caregivers. Thus, we aimed to explore the variables that were associated with higher care burden among all caregivers and only among caregivers for people living with dementia, and whether the increased burden could be associated with a discrepancy between loneliness and social isolation. Method(s): 'Comparing Loneliness and Isolation in COVID-19' was an online global survey of over 20,000 respondents, including 5243 caregivers across 50 countries with enduring brain or/and physical health conditions. We first used a multilevel modelling to identify risk factors associated with higher burden. Then, we defined profiles of discrepancy between loneliness and social isolation, based on the differences between standardized score on a scale of loneliness and of social connectedness and estimated the association between the discrepancy and higher burden. Result(s): In our sample, 74% of caregivers were female, 44% were caring for people with dementia, and 22% for people with multiple conditions, including dementia. The most prevalent age group was 60-69 years old. Factors significantly associated with higher care burden were being female, having poorer financial situation, worse mental health during the pandemic, caring for people with dementia or intellectual disabilities, caring in the same home, being diagnosed with COVID, and changes of care abilities. 40% of caregivers consistently reported high level of loneliness and social isolation, 38% reported consistent lower levels of both, and two groups reported discordance (low levels of loneliness and high social isolation in 13%;high levels of loneliness and mild social isolation in 12%). The latter group was at the highest risk of self-reported increased and intense care burden. Conclusion(s): This represents the largest, most widespread survey on the impact of the COVID-19 pandemic on caregivers of people with long-term conditions to date and reflects the importance of capturing the nuances in the relationship between loneliness and social isolation in caregivers. It will be an important resource for support agencies and to inform policy. Copyright © 2022 the Alzheimer's Association.
ABSTRACT
Background: The COVID-19 pandemic and associated lockdowns have had a dramatic impact on many people, but individuals with an intellectual disability, given the prevalence of congregate living and high levels of co-morbid conditions, may be particularly vulnerable at this time. A prior initial survey of participants of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) found that, despite a majority of participants being tested, only a small proportion had tested positive for COVID-19. Furthermore, despite some reporting positive aspects to the lockdown, a similar proportion were experiencing stress or anxiety during the pandemic. The pandemic and lockdowns have continued, and it is possible that experiences and consequences have changed over time. Aim: To explore over time and in greater depth the impact of COVID-19 and associated lockdowns and to further establish rates of infection, rates of vaccination and participants' experiences. Methods: A structured questionnaire for people with intellectual disability participating in the IDS-TILDA longitudinal study, to be administered by telephone/video in summer 2021. Where participants are unable to respond independently, a proxy respondent will be invited to either assist the participant or answer questions on their behalf. This questionnaire will include questions from the first COVID-19 questionnaire, with extra questions assessing "long COVID" (i.e. COVID-19 lasting for 12 weeks or longer), infection control behaviours, changes in mental health, social contacts and loneliness, frailty, healthcare, and incidence of vaccination. Impact: The results of this survey will be used to inform healthcare provision for people with intellectual disability during the latter stages of the lockdown and into the future.