Impact of COVID-19 Pandemic on Caregivers of People with an Intellectual Disability, in Comparison to Carers of Those with Other Disabilities and with Mental Health Issues: A Multicountry Study.

Carers supporting people with an intellectual disability often rely on others to manage the burden of care. This research aims to compare the differences between carer groups and understand the predictors of loneliness changes and burden for carers of people with an intellectual disability. Data from the international CLIC study were analysed. In total, 3930 carers responded from four groups; people who care for those with mental health difficulties (n = 491), dementia (n = 1888), physical disabilities (n = 1147), and Intellectual disabilities (n = 404). Cross tabulation and the chi-squared test were used to compare group compositions and binary logistic regression to model predictors within the intellectual disability group. A total of 65% of those caring for people with an intellectual disability experienced increased burden, and 35% of carers of people with an intellectual disability and another condition experienced more severe loneliness. Becoming severely lonely was predicted by feeling burdened by caring (AOR, 15.89) and worsening mental health (AOR, 2.13) Feeling burden was predicted by being aged between 35 and 44 (AOR, 4.24), poor mental health (AOR, 3.51), and feelings of severe loneliness prior to the pandemic (AOR, 2.45). These findings demonstrate that those who were already struggling with caring experienced the greatest difficulties during the COVID-19 lockdowns.

Care burden, loneliness, and social isolation in caregivers of people with physical and brain health conditions in English-speaking regions: Before and during the COVID-19 pandemic.

BACKGROUND: Public health restrictions due to the COVID-19 (SARS CoV-2) pandemic have disproportionately affected informal caregivers of people living with long term health conditions. We aimed to explore levels of care burden, loneliness, and social isolation among caregivers of people with enduring physical and brain health conditions in English-speaking regions worldwide, by investigating outcomes before and during the COVID-19 pandemic. METHODS: A cross-sectional anonymous online survey data from 2287 English-speaking caregivers of people with long term health conditions from four English-speaking regions (UK, Ireland, USA, New Zealand) included measures of care burden, loneliness, and social isolation, reported before and during the COVID-19 pandemic. Analyses were descriptive, followed by an ordinal regression model for predictors of burden. RESULTS: Compared to pre-pandemic levels, all caregivers experienced a significant increase in burden, loneliness, and isolation. Caregivers of people with both brain health and physical conditions were the most burdened and had the highest levels of loneliness and isolation compared to caregivers of people with either a brain health or physical condition only. The increase in care burden among caregivers of people with brain health challenges was associated with caregiver's gender, moderate and severe emotional loneliness, magnitude and frequency of isolation during the pandemic, and care circumstances (cohabitation with the care recipient, restrictions on the ability to provide care). CONCLUSIONS: Health and social care interventions should target caregivers' care circumstances and psychological outcomes, particularly in women, accounting for the significant additional burden of care, loneliness, and isolation resulting from pandemic-related restrictions.

COVID-19-related loneliness and social isolation in caregivers of people with brain health challenges: The CLIC-Caregiver Global Survey

Background Prior to COVID-19, >90% of caregivers of people with brain health challenges (dementia, mental ill health, intellectual disability) experienced high levels of distress, burden, loneliness and social isolation. The COVID-19 pandemic has significantly increased these impacts, particularly since these caregivers are often older and physically vulnerable themselves. The aim of this cross-sectional study is to explore coping and caregiver burden, loneliness and social isolation in caregivers of people with brain health challenges during the COVID-19 pandemic. Method CLIC-Caregiver was a cross-sectional, online, and global survey (June 2nd - November 15th, 2020) using self-administered questionnaires directed at informal caregivers of people with long-term brain health challenges. The study was embedded within a larger survey of loneliness and social isolation for general public (?Comparing Loneliness and Isolation in COVID-19? (CLIC)), including validated loneliness and isolation tools. Translated into ten different languages such as Arabic, French, Romanian, etc, the survey was disseminated over 100 countries. Respondents were included in the CLIC-caregiver sub-study if they answered yes to the question ?Do you provide care and support to a family member or friend with a long-term or life-limiting health problem or disability (including mental health)?. The CLIC project received the initial global ethical approval from Ulster University. The data were fully anonymized. Result From the CLIC main study, 5243 (25%) identified themselves as caregivers. This proportion varied in different countries, from 12 % in Romania to 65% in France. 2323 (44%) had care recipients with dementia, 1761 with physical conditions (disability or long-term illness), 832 with enduring mental health problems, and 404 with intellectual disability. Measures of caregiver burden, loneliness and social isolation will be compared across geographic regions, sociodemographic factors, and risk factors for poor outcomes sought. Findings will be distributed to relevant stakeholders in the form of a project report, with region and country-specific outcomes. This will support recommendations and actions supporting caregivers of people with brain health challenges. Conclusion 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. It will be an important resource for support agencies and to inform policy.

Does Place Matter When Understanding Loneliness and Social Isolation?

Physical distancing and restriction of movements as measures to prevent the spread of Covid-19 required people to change their work, home and social lives. Loneliness and social isolation have emerged as key public health issues during the pandemic. Traditionally when considering loneliness the focus is often on individual factors rather than within the context of structural and environmental dimensions. This paper will utilise data from the Coping with Loneliness, Isolation and Covid-19 global online survey which had over 20, 000 global responses from people aged 18+ in 2020. Analysis will use the lens of ‘place’ and the 5-item UCLA scale and 6-item Lubben social network scale to understand the social and demographic characteristics and structural and environmental factors associated with those experiencing loneliness and/or social isolation in rural and urban areas both before and during the pandemic. The paper will conclude with key messages from a public health perspective.

Impact of the COVID-19 Pandemic on Loneliness and Social Isolation: A Multi-Country Study.

The COVID-19 global pandemic and subsequent public health social measures have challenged our social and economic life, with increasing concerns around potentially rising levels of social isolation and loneliness. This paper is based on cross-sectional online survey data (available in 10 languages, from 2 June to 16 November 2020) with 20,398 respondents from 101 different countries. It aims to help increase our understanding of the global risk factors that are associated with social isolation and loneliness, irrespective of culture or country, to support evidence-based policy, services and public health interventions. We found the prevalence of severe loneliness was 21% during COVID-19 with 6% retrospectively reporting severe loneliness prior to the pandemic. A fifth were defined as isolated based on their usual connections, with 13% reporting a substantial increase in isolation during COVID-19. Personal finances and mental health were overarching and consistently cross-cutting predictors of loneliness and social isolation, both before and during the pandemic. With the likelihood of future waves of COVID-19 and related restrictions, it must be a public health priority to address the root causes of loneliness and social isolation and, in particular, address the needs of specific groups such as carers or those living alone.

Older Users of a Befriending Service in Ireland and the Maintenance of Personal Autonomy during the COVID-19 Pandemic.

In the Republic of Ireland (RoI), COVID-19 public health guidelines have been most restrictive for people aged 70 and over. Such individuals are most likely to avail of befriending services offered by a network of Irish organisations. The aim of this study was to explore the impact of COVID-19 guidelines on befriending service users, and to develop recommended adaptations to befriending services compatible with such guidelines. A qualitative constructivist grounded theory approach was taken to the study design and analysis, using semi-structured interviews to collect data from 11 participants by telephone between May 2020 and January 2021. Results show a grounded theory describing how older users of a befriending service maintained their personal autonomy in the face of strict government guidelines. Participants described living life as usual, often contravening guidelines, and how they chose to adapt to the situation, yielding both positive and negative outcomes. Some potential adaptations were discussed to the befriending service (including a preserved focus on the social and emotional functions of the befriending relationship, and the accommodation of collaborative decision making about communicative alternatives), but ultimately it was made clear that participants would tailor the services to their own preferences. Results have implications for befriending service design and delivery, and for public health officials who wish to support the health of older adults during the COVID-19 pandemic.