Dementia research in Ireland: What should we prioritise?

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 five 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 dementia-focused research 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.

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.

A structured multicomponent group programme for carers of people with acquired brain injury: Effects on perceived criticism, strain, and psychological distress.

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.

Post-traumatic growth, illness perceptions and coping in people with acquired brain injury.

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.