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.

The long-term impact of loneliness and social isolation on depression and anxiety in memory clinic attendees and their care partners: A longitudinal actor-partner interdependence model.

Introduction: This study examined the long-term influence of loneliness and social isolation on mental health outcomes in memory assessment service (MAS) attendees and their care partners, with a focus on interdependence and bidirectionality. Methods: Longitudinal data from 95 clinic attendees with cognitive impairment, and their care partners (dyads), from four MAS in the North of England were analyzed. We applied the actor-partner interdependence model, seeking associations within the dyad. At baseline and 12-month follow-up, clinic attendees and care partners completed measures of loneliness and social isolation, depression, and anxiety. Results: Social isolation at baseline was more prevalent in care partners compared to MAS attendees. Social isolation in MAS attendees was associated with higher anxiety symptoms (ß = 0.28, 95% confidence intervals [CIs] = 0.11 to 0.45) in themselves at 12 months. We found significant positive actor and partner effects of loneliness on depression (actor effect: ß = 0.36, 95% CIs = 0.19 to 0.53; partner effect: ß = 0.23, 95% CIs = 0.06 to 0.40) and anxiety (actor effect: ß = 0.39, 95% CIs = 0.23 to 0.55; partner effect: ß = 0.22, 95% CIs = 0.05 to 0.39) among MAS attendees 1 year later. Loneliness scores of the care partners have a significant and positive association with depressive (ß = 0.36, 95% CIs = 0.19 to 0.53) and anxiety symptoms (ß = 0.32, 95% CIs = 0.22 to 0.55) in themselves at 12 months. Discussion: Loneliness and social isolation in MAS clinic attendees had a downstream effect on their own and their care partners' mental health. This highlights the importance of including care partners in assessments of mental health and social connectedness and expanding the remit of social prescribing in the MAS context.

Care partner needs of people with neurodegenerative disorders: What are the needs, and how well do the current assessment tools capture these needs? A systematic meta-review.

OBJECTIVES: The burden on care partners, particularly once dementia emerges, is among the greatest of all caregiving groups. This meta-review aimed to (1) synthesis evidence on the self-reported needs of care partners supporting people living with neurodegenerative disorders; (2) compare the needs according to care partner and care recipient characteristics; and (3) determine the face validity of existing care partner needs assessment tools. METHODS: We conducted a systematic review of reviews involving a thematic synthesis of care partner needs and differences in needs according to demographic and other characteristics. We then conducted a gap analysis by identifying the themes of needs from existing needs assessment tools specific to dementia and cross-matching them with the needs derived from the thematic synthesis. RESULTS: Drawing on 17 published reviews, the identified range of needs fell into four key themes: (1) knowledge and information, (2) physical, social and emotional support, (3) care partner self-care, and (4) care recipient needs. Needs may differ according to disease trajectory, relationship to the care recipient, and the demographic characteristics of the care partner and recipient. The 'captured needs' range between 8% and 66% across all the included needs assessment tools. CONCLUSIONS: Current tools do not fully or adequately capture the self-identified needs of care partners of people living with neurodegenerative disorders. Given the high burden on care partners, which has been further exacerbated by the COVID-19 (SARS CoV-2) pandemic, the needs assessment tools should align with the self-reported needs of care partners throughout the caregiving trajectory to better understand unmet needs and target supportive interventions.

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.

Alzheimer's disease research progress in the Mediterranean region: The Alzheimer's Association International Conference Satellite Symposium.

As research and services in the Mediterranean region continue to increase, so do opportunities for global collaboration. To support such collaborations, the Alzheimer's Association was due to hold its seventh Alzheimer's Association International Conference Satellite Symposium in Athens, Greece in 2021. Due to the COVID-19 pandemic, the meeting was held virtually, which enabled attendees from around the world to hear about research efforts in Greece and the surrounding Mediterranean countries. Research updates spanned understanding the biology of, treatments for, and care of people with Alzheimer's disease (AD_ and other dementias. Researchers in the Mediterranean region have outlined the local epidemiology of AD and dementia, and have identified regional populations that may expedite genetic studies. Development of biomarkers is expected to aid early and accurate diagnosis. Numerous efforts have been made to develop culturally specific interventions to both reduce risk of dementia, and to improve quality of life for people living with dementia.

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.

Nursing home staff mental health during the Covid-19 pandemic in the Republic of Ireland.

BACKGROUND: Nursing homes for older adults have been disproportionately affected by the Covid-19 pandemic with increased mortality of residents and staff distress. OBJECTIVE: To quantify the mental health of nursing home staff during the Covid-19 pandemic in the Republic of Ireland. DESIGN/METHODS: Cross-sectional anonymous study of Republic of Ireland nursing home staff (n = 390) during the third wave of the Covid-19 pandemic. Online survey collecting demographic information, Covid-19 exposure history and mental health measures. RESULTS: There were significant differences between nurses, healthcare assistants (HCA) and non-clinical staff history in age, ethnicity, years' experience, history of Covid-19 infection and contact with Covid-19 positive acquaintances. Moderate-severe post-traumatic stress disorder symptoms were found in 45.1% (95% confidence interval [CI] 40.2%-50.1%) of all staff. A World Health Organisation-5 (WHO-5) wellbeing index score ≤32, indicating low mood, was reported by 38.7% (95% CI, 33.9%-43.5%) of staff; significantly more nurses reported low mood. Suicidal ideation and suicide planning were reported, respectively, by 13.8% (95% CI, 10.4%-17.3%) and 9.2% (95% CI, 6.4%-12.1%) of participants with no between-group differences. HCAs reported a significantly higher degree of moral injury than non-clinical staff. Nurses were more likely to use approach coping styles than non-clinical staff. Work ability was insufficient in 24.6% (95% CI 20.3%-28.9%) of staff. CONCLUSION: Nursing home staff report high levels of post-traumatic stress, mood disturbance and moral injury during the Covid-19 pandemic. Differences in degree of moral injury, wellbeing and coping styles were found between staff groups, which need to be incorporated into planning supports for this neglected workforce.

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.