Background The social and economic challenges of the COVID-19 pandemic greatly impacted people's physical and mental health. The majority of care for individuals with brain health challenges, ...including dementia and mental illness, is provided by informal family caregivers. The “Coping with Loneliness, Isolation and COVID-19” (CLIC) Global Caregiver Survey 2020 received responses from over 5,000 caregivers across 50 countries of people living with enduring brain and/or physical health conditions. Aim This study examined English-speaking caregivers of people with brain health challenges (dementia and mental health conditions) descriptions of changes and interruptions in their ability to provide care in the context of the COVID-19 pandemic. Materials and methods Quantitative and qualitative data were collected as part of the large-scale CLIC Global Caregiver Survey. Data from over 900 English language respondents were analyzed using descriptive statistics and thematic content analysis. A multidisciplinary team of clinicians and health policy practitioners participated in team-based qualitative analyses. Results The majority of respondents were from the United States (71% USA), female (83%) and care providers to people living with dementia (81%). Respondents reported concerns about their loved one's physical and mental health, the limited access to other caregiving sources and the limited opportunities to maintain personal wellbeing. Practical, social, psychological and emotional impacts affected their ability to offer care. There was clear evidence that the disruption to health and social care services—institutions, day care and home services impacted the ability to offer care. Discussion The pandemic may be seen as a catastrophic “event” that negatively impacted lives and livelihoods. A number of the social determinants of health were negatively impacted for the caregivers surveyed during this prolonged period. Caring for caregivers and supportive health and social care interventions are required to maintain the wellbeing of this informal workforce. This study represents the largest, cross-country survey on the impact of the COVID-19 pandemic on caregivers of people with brain health challenges to date; serving as an important resource for support agencies and to inform policy.
Background:
Dementia research prioritisation allows for the
systematic allocation of investment in dementia research by governments, funding agencies and the private sector. There is currently a lack ...of information available in Ireland regarding priority areas for dementia research.
To address this gap,
a dementia research prioritisation exercise was undertaken, consisting of an online survey of professionals in the dementia field and workshops for people living with dementia and family carers.
Methods:
(1) An anonymous online survey of professionals, based on an existing WHO global survey: The global survey was adapted to an Irish context and participants were asked to score 65 thematic research avenues under 5 criteria; (2) A mixed-methods exercise for people living with dementia and family carers: This involved two facilitated workshops where participants voted on the research themes they felt were important to them and should be addressed through research.
Results:
Eight of the top ten research priorities in the survey of professionals (
n
=108) were focused on the delivery and quality of care and services for people with dementia and carers. Other research avenues ranked in the top ten focused on themes of timely and accurate diagnosis of dementia in primary health-care practices and diversifying therapeutic approaches in clinical trials. Participants in the workshops (
n
=13) ranked ‘better drugs and treatment for people with dementia’, ‘dementia prevention/ risk reduction’ and ‘care for people with dementia and carers’ as their top priority areas.
Conclusions:
Findings from this prioritisation exercise will inform and motivate policymakers, funders, and researchers to support and conduct research to address the burden of dementia and ensure that the limited resources made available are spent on research that has the most impact for those who will benefit from and use the results of research.
Objectives
The purpose of this study was to examine whether a brief structured multicomponent group programme for carers of people with acquired brain injury (ABI) was effective in reducing carer ...distress, strain, and critical comments between carer and person with an ABI compared to a waiting list control condition.
Design
Waiting list controlled study. Pre‐ and post‐test design with outcomes measured at induction, at the end of the intervention, and at the 3‐month follow‐up.
Methods
One hundred and thirteen carers took part in the study: 75 carers in the intervention group and 38 in the waiting list control group (2:1 ratio). All participants completed assessments of caregiver strain (Caregiver Strain Index), perceived criticism towards and from the person with an ABI (Perceived Criticism Scale), and psychological distress (Hospital Anxiety and Depression Scale). The person with an ABI was also assessed on the Functional Independence Measure/Functional Assessment Measure.
Results
Using an intention to treat analysis, there were significant effects of group (intervention vs. waiting list control) at the 3‐month follow‐up on carers' perceptions of stress and strain resulting from caring, and perceptions of criticism received by the carer from the person with an ABI. A subsequent per‐protocol analysis showed an additional reduction at 3 months in levels of criticism expressed towards the person with an ABI by the carer. There was no significant effect of the intervention on psychological distress.
Conclusions
The structured multicomponent carers programme showed beneficial effects in terms of reducing carer strain and in the reduction of elements of perceived criticism at the 3‐month follow‐up; however, it did not significantly affect psychological distress in carers, suggesting the need for additional support for this group of carers.
Statement of contribution
What is already known on this subject?
A number of studies have suggested that carers of people with acquired brain injury (ABI) experience greater levels of carer burden and mental health difficulties than carers of other patient groups. Previous interventional studies on ABI are few, and such studies have diverged in the extent to which they have been oriented towards education, psychological support, or management of behavioural difficulties, making results somewhat difficult to apply in community health settings with this potential client group.
What does this study add?
We develop, describe, and evaluate a brief structured multicomponent carers' training and support programme for carers of people with ABI.
Not all outcomes were affected positively by the intervention. While the intervention successfully reduced carer strain and critical comments, distress did not significantly reduce compared to people in a waiting list control group.
Carers who were spouses/partners and carers who were parents exhibited comparable levels of strain, distress, and perceived criticism.
Younger carers reported significantly higher levels of distress and carer strain at induction to the programme.
The positive effects of the programme were maintained for at least 3 months, suggesting that it may have initial validity for improving some of the negative aspects of the carer experience.
Background
Public health restrictions due to the COVID‐19 pandemic have affected care partners of people living with dementia and/or mental health conditions. This qualitative study explores care ...partners’ ability to offer care, and changes and interruptions to care provision during the period of the COVID‐19 pandemic (2020) in English‐speaking regions worldwide.
Method
As part of an international cross‐sectional online survey, qualitative data were collected from over 1,000 English‐speaking care partners of people living with dementia and/or mental health conditions. Responses to an open‐ended question about ability to care were coded and analysed thematically. The analysis was undertaken by three independent interdisciplinary coding dyads.
Result
A number of main themes and subthemes were generated through the analysis. Reduced in‐person contact with the person with a brain health condition and restrictions in health and social care services created practical, psychological and emotional impacts for care partners. The lack of adequate information from health/social care services, deterioration in the condition of the person living with a brain health condition, and additional care hours/duties were identified. Care partners also mentioned the fear of virus transmission and increased awareness of public health measures as factors that changed or interrupted their ability to provide care.
Conclusion
The ability of care partners to provide care was changed or interrupted, and disruption to routines and services available impacted on their well‐being. These findings reflect the complexity of the care partner role and highlight the importance of supporting care partners, in particular during periods of service restrictions such as those experienced as a result of the pandemic. Findings will be of interest to policymakers and service providers.
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.
Key points
This study highlights the significant negative impact that COVID‐19‐related restrictions have had on informal caregivers of people with enduring health conditions in four English speaking regions, globally.
Heightened levels of burden, loneliness, and social isolation occurred during the pandemic compared to pre‐pandemic in caregivers of people with enduring physical and brain health or physical health conditions.
The increase in burden in caregivers of people with brain health conditions was associated with caregiver factors (including gender, emotional loneliness, and increase in social isolation) and pandemic‐related external factors, such as cohabitation with the care recipient and the impact of COVID‐19‐related restrictions on the ability to provide care.
These findings have implications for policy development and healthcare interventions to target care circumstances and psychosocial outcomes of informal caregivers and ensure their equitable access to social support, taking into consideration pandemic‐related changes.
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
‘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
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
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.
Post-traumatic growth is a process by which an individual who has faced a significantly adverse and life-altering event, can show evidence of an ability meaningfully to construe benefits from such ...adversity. The purpose of this study was to investigate, in a sample of people with acquired brain injury (ABI), the contribution of illness perceptions, distress, disability, and coping strategies and health to post-traumatic growth. Seventy people with an ABI took part in this cross-sectional investigation, comprising 70% males and 30% females. Traumatic brain injury accounted for the majority of brain injuries (56%), with 31% arising from a cerebrovascular accident and the remaining 13% arising from hypoxia, brain tumours, brain abcesses and encephalitis. The average time since injury was 70.43 months (SD = 55.30, range = 7-350). Participants completed assessments comprising post-traumatic growth (Post-traumatic Growth Inventory), beliefs about their condition (Illness Perception Questionnaire Revised), coping strategies (Brief COPE), anxiety and depression (Hospital Anxiety and Depression Scale) and functional disability (Functional Independence Measure and Functional Assessment Measure). All participants were accessing post-acute brain injury rehabilitation and support services. Results showed that greater levels of post-traumatic growth were associated with greater use of adaptive coping strategies (r=.597), lower levels of distress (r = -.241) and stronger beliefs about treatment-induced controllability of the effects arising from brain injury (r=.263). Greater use of adaptive coping strategies accounted for the greater proportion of the variance in post-traumatic growth (sr
2
= 0.287) and was the only variable found to make a unique and statistically significant contribution to the prediction of growth. Illness perceptions more generally were not significantly associated with growth experiences. This study provides additional evidence of the factors associated with the process of post-traumatic growth, in particular adaptive coping strategies that may help to facilitate growth, although the direction of this relationship requires further empirical investigation. The findings of this study may have implications for professionals providing neurorehabilitation services.
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.
Neuropsychological rehabilitation is concerned with enabling people with brain injury to achieve their maximum potential in various domains such as psychological, social, leisure, vocational or ...everyday functioning. This study investigated, in a sample of people with Acquired Brain Injury (ABI), whether participating in a twelve-week group intervention brings about significant change in areas of cognition, community integration, satisfaction with life, distress, cognitive self-evaluation and knowledge of brain injury. Thirty-two participants (n = 32) with an ABI took part in this matched control study. Participants completed a series of neuropsychological tests (California Verbal Learning Test-Second Edition (CVLT-II); Trail Making Test; Sustained Attention Response Task (SART); and Digit-Span Task) and questionnaires (Community Integration Questionnaire; Satisfaction With Life Scale; Hospital Anxiety and Depression Scale; Cognitive Group Self-Evaluation; and Knowledge of Brain Injury Questionnaire) at three timepoints over a nine month period. Results showed a significant overall effect across the three timepoints in the intervention group on elements of the CVLT-II test and a significant overall effect across the three timepoints in both groups on elements of the Trail Making Test. A significant effect was seen between T1 and T2 in the intervention group on elements of the SART and Digit Span tests, and for the control group, significant effects between these two timepoints were seen on elements of the Trail Making Test, SART (target reaction time subscale) and the Digit Span test (disimprovment in performance between T1 and T2). Significant effects were seen between T2 and T3 for the intervention group on elements of the Trail Making Test and for the control group on elements of the CVLT-II test. Significant effects were seen between T1 and T3 for the intervention group on elements of the Trail Making and SART tests and for the control group, on elements of the CVLT-II test and Cognitive Self Evaluation questionnaire. There was a significant difference in Knowledge of Brain Injury scores for the main effect of time. This study provides some support for the effectiveness of a group-based intervention combining psychoeducation, basic strategy training and stress management techniques for individuals with ABI and has important implications for neurorehabilitation service providers, individuals with an ABI and their families.
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