Carer Strain Research Articles

Healthcare professionals' perceptions on providing support to informal carers within stroke care.

The sudden nature of stroke onset does not provide carers with sufficient time to prepare for the demands associated with caring. Healthcare professionals can have a vital role in providing carers with support and training, which may reduce carer stress and strain, and allow for better health and rehabilitation outcomes for the stroke survivor. The experiences of healthcare professionals on supporting carers in stroke care, however, remain unclear. To understand the experiences and perceptions of healthcare professionals working in stroke care on implementing resources and support to informal stroke carers. Semi-structured interviews were conducted with 11 healthcare professionals (5 occupational therapists, 5 physiotherapists, 1 psychologist) with at least 12 months' experience in working with stroke survivors. Interviews ranged from 25-70 minutes in duration, and were recorded, transcribed, and analysed using thematic analysis. Three overarching categories that were explored were: (1) Experiences of working in stroke care and supporting carers; (2) Recommendations for a program designed for carers; and (3) Future priorities in stroke care. Participants discussed a variety of strategies they utilised to support carers including collaborating with other healthcare professionals and utilising skills and experience. Healthcare professionals highlighted the need for additional resources that are designed specifically for carers and explored key topics including carer stress and fatigue, support services, stroke education, and how to look after oneself. Participants identified priorities for stroke care including additional professional training and resource availability. This study provided a unique insight from the perspectives of healthcare professionals on supporting carers. Participants identified the need for additional training and resources to equip healthcare professionals to better support carers. Future programs designed for carers should be informed by the needs and experiences of both informal carers and healthcare professionals.

The Lived Experience of Frailty: Are Frailty Intervention Teams Adding to Patient Quality of Life?

Abstract Background Numerous clinical tools are used to identify and quantify frailty, but the lived experience of frailty is not consistently measured or considered in clinical practice. The project aim was to understand the health perceptions of older adults treated by the Frailty Intervention Team (FIT) and establish if the team has an impact on care burden. Methods Participants were recruited from a hospital based, out-patient Frailty Intervention Clinic over a 4-month period. Older adults were classified as frail by the Clinical Frailty Scale (CFS). The lived experience of frailty was assessed via the EQ 5D 5L a self-rated quality of life measure with a visual analogue scale (EQ VAS). The impact of frailty on carers was examined by the Carer Strain Index (CSI). These subjective measures were recorded on initial assessment and 2 months post intervention. Results 31 individuals were assessed (male n=13, female n=18). The average CFS was 4.98 (4.91 male, 5.05 female), indicative of ‘Living with Mild Frailty’. 74.19% of participants (male n=9, female n=14) responded to the follow up questionnaires. Pre-intervention, EQ VAS average responses were 42.5/100 for males and 49.33/100 for females. Two months post intervention improvements were observed in both males and females with scores of 72.77/100 and 62.5/100 respectively. CFS ratings remained unchanged post intervention. 29% of carers reported a CSI of greater than 7/12 pre intervention – indicating high level of carer burden. Post intervention this figure reduced to 9.6% of carers. Conclusion This FIT model adds positively to the lives of older adults in a holistic manner. The average participant rated their health positively post intervention despite being classified as ‘Living with Mild Frailty’. This underscores that the patient is the expert of their own experience and challenges the negative perceptions of frailty. Highlighting the need for a holistic understanding of frailty beyond classification scales.

Predictors of perceived caregiver strain in carers of patients living with heart failure: data from a collectivist society

Abstract Background Informal caregivers are individuals voluntarily caring for someone facing a disease, disability, or any condition requiring particular attention.1 They provide around 90% of in-home care and play a key role in supporting the wellbeing and care of people living with chronic illnesses.2 Such diagnoses alter roles within the family unit and cause feelings of uncertainty, anxiety, depression, resentment, among others. This is true in caregivers of patients living with Heart Failure [HF]. High care dependency and lack of formal support for caregiving have increased the prevalence of caregiver strain. Purpose To describe caregiver strain and identify its determinants among caregivers of patients living with HF. Methods This was a cross-sectional correlational study. Caregivers were assessed for caregiver strain (Modified Caregiver Strain Index [MCSI]), social support (Carers of Older People in Europe Index [COPE]), and quality of life (QOL; Short Form 12). MCSI scores were compared across dyadic variables and then used as the outcome variables to create the regression model. Results 108 patients (age 63.54 ± 10.52 years, 70.4% males, 81.55% married) and caregivers (age 49.37 ± 13.69 years, 14.8% males, 82.2% married) were included. More than 80% of the dyads lived in the same household. Caregivers have been assuming this role for an average of 8.53 years and a mean of 37.73 hours per week. Almost 50% of the caregivers reported providing minimal care for their patient while 35% reported providing full care. An alarming 67.6% of the dyads were considered discordant and did not agree on how and by who the care is performed. Caregiver strain was average in this sample with a mean of 11.32 ± 6.94. Caregivers who provided full care had significantly higher caregiver strain (13.75 ± 6.16 versus 9.82 ± 7.16; F (2,76) = 3.329, p = 0.041). Poor caregiver perceived quality of the dyad was significantly associated with higher caregiver strain (16.07 ± 6 versus 10.71 ± 6.9; p < 0.001). Caregivers of symptomatic patients had lower caregiver strain than caregivers of asymptomatic patients (9.90 ± 7.43 versus 12.69 ± 6.21; p = 0.019). Being stressed in caregiving was significantly associated with higher caregiver strain (r = 0.774; p < 0.001). Having lower physical and/or mental QOL were associated with higher strain (r = -0.291 and -0.536 respectively; p < 0.001). Finally, a higher negative impact from caregiving, a lower mental and physical QOL, and a lower relationship quality explained about 63% of the variance in Caregiver Strain (F = 44.001; p < 0.001). Conclusion Knowledge from this study will help place caregivers’ health at the core of caregiving processes. HF nurses and physicians should start giving special attention to caregivers of HF patients who show signs if high caregiver strain. Interventions to reduce strain should be designed to address caregivers’ appraisal of dyad relationship quality, instrumental social support, and QOL.

RCT-based Social Return on Investment (SROI) of a Home Exercise Program for People With Early Dementia Comparing In-Person and Blended Delivery Before and During the COVID-19 Pandemic.

Regular exercise and community engagement may slow the rate of function loss for people with dementia. However, the evidence is uncertain regarding the cost-effectiveness and social return on investment (SROI) of home exercise with community referral for people with dementia. This study aimed to compare the social value generated from the in-person PrAISED program delivered before March 2020 with a blended PrAISED program delivered after March 2020. SROI methodology compared in-person and blended delivery formats of a home exercise program. Stakeholders were identified, a logic model was developed, outcomes were evidenced and valued, costs were calculated, and SROI ratios were estimated. Five relevant and material outcomes were identified: 3 outcomes for patient participants (fear of falling, health-related quality of life, and social connection); 1 outcome for carer participants (carer strain), and 1 outcome for the National Health Service (NHS) (health service resource use). Data were collected at baseline and at 12-month follow-up. The in-person PrAISED program generated SROI ratios ranging from £0.58 to £2.33 for every £1 invested. In-person PrAISED patient participants gained social value from improved health-related quality of life, social connection, and less fear of falling. In-person PrAISED carer participants acquired social value from less carer strain. The NHS gained benefit from less health care service resource use. However, the blended PrAISED program generated lower SROI ratios ranging from a negative ratio to £0.08:£1. Compared with the blended program, the PrAISED in-person program generated higher SROI ratios for people with early dementia. An in-person PrAISED intervention with community referral is likely to provide better value for money than a blended one with limited community referral, despite the greater costs of the former.Trial registration: ISRCTN Registry ISRCTN15320670.

Membangun Kemandirian Santri: Peran Wali Asuh di Pondok Pesantren Darussa’adah Lirboyo

The aim of this research is to understand the role of foster carers in providing education and guidance that can increase the independence of students at the Darussa'adah Lirboyo Islamic boarding school in social, emotional and religious aspects. In addition, it identifies environmental factors, parents and foster carers that can influence the level of independence of students, so that necessary corrective steps can be identified. This research uses a qualitative research method with a case study approach. The data taken involved foster carers, students, and the administrator of the Darussa'adah Lirboyo Islamic boarding school as primary data sources. Data collection will be carried out through in-depth interviews, observation and documentation studies. The research results show that the role of foster carers in educating and fostering the independence of students at the Darussa'adah Lirboyo Islamic boarding school is very significant. Foster guardians have an important role in accompanying and guiding every aspect of the students' daily lives, including religious practices, study activities and extracurricular activities. They act as substitute parental figures in Islamic boarding schools and provide good examples through positive behavior and advice. In education and fostering independence, foster carers train students to be independent in terms of personal hygiene, time management and responsibility. They also provide encouragement, motivation and enthusiasm to students in facing various challenges, thereby increasing students' self-confidence and enthusiasm for learning.

A programme evaluation of ‘First Steps’: A peer-conceived, developed and led self-management intervention for people after a Parkinson's diagnosis

Objective A diagnosis of Parkinson's often leads to uncertainty about the future and loss of perceived control. Peer support may offer a means to address these concerns and promote self-management. Design A programme evaluation of the feasibility and potential effects of ‘First Steps’, utilising a pragmatic step wedge approach. Comparing First Steps (intervention) to (control) conditions. Setting: In the community at four sites in southern England. Participants: Newly diagnosed (≤ 12months) people with Parkinson's. Intervention: First Steps was a 2-day peer-conceived, developed and led intervention to support self-management. Main measures: At 0, 12 and 24 weeks anxiety and depression (Hospital, Anxiety and Depression Scale, HADS), daily functioning (World Health Organisation Disability Assessment Schedule, WHODAS), physical activity, quality of life (EQ5D), carer strain and service utilisation were assessed. Results Between February 2018 and July 2019, 36 participants were enrolled into intervention and 21 to control conditions, all were included in statistical analysis. Lost to follow up was n = 1 (intervention) and n = 1 adverse event was reported (control, unrelated). Of the 36 allocated to the intervention n = 22 participants completed both days of First Steps during the study period. Completion of outcome measures was >95% at 24 weeks. Small effects favouring the intervention were found for HADS (odds ratio (OR) = 2.06, 95% confidence interval (CI) 0.24:17.84), Carer Strain Index (OR = 2.22, 95% CI 0.5:9.76) and vigorous (d = 0.42, 95% CI −0.12:0.97) and total physical activity (d = 0.41, 95% CI −0.13:0.95). EQ5D, WHOSDAS and service utilisation, was similar between groups. Conclusions First Steps was feasible and safe and we found potential to benefit physical activity, mental health and carer strain. Further research with longer-term follow up is warranted.

317 Analysing the social history aspects of an integrated care comprehensive geriatric assessment incorporating patients views and wishes

Abstract Background An evaluation of social well-being is an important component of a Comprehensive Geriatric Assessment (CGA). There is no clear guidance about how best to structure and examine these factors as part of a CGA. We sought to examine current practice with respect to the collection of information from a social care perspective across different integrated care CGA proformas. Methods We completed a cross sectional study of the social care domain of integrated care based CGA proformas. All operational leads for each integrated care hub in the country were contacted and invited to share their local CGA. We completed a thematic analysis of the social care section including social, financial and wellbeing assessments. Results We included 16 different CGAs that are in use across different integrated care hubs. All CGAs had a dedicated section for assessing social history with variability in what was included in different CGAs. Patient’s wishes and expectations were commonly included but the manner in which they were collected and emphasis varied. 7 (43%) specifically captured whether the patient has an enduring power of attorney in place, 5 (31%) collected information about formal advanced care directives, and 2 (12%) enquired about nominated assisted decision makers. Ability to manage finances was captured through the Lawton Brody IADL scale in two CGAs. Half of CGAs included a section to capture carer strain and the term ‘next of kin’ was used in 6 of 16 CGAs. Conclusion There is significant heterogeneity in the structure of the social care section of a CGAs across different integrated care hubs, particularly with respect to capturing information surrounding advanced care planning. Signposting of patients’ wishes and expectations was useful for focusing on patient-centred care.

225 The pattern of ICPOP service use according to the clinical frailty scale

Abstract Background We are a specialist integrated team working with older people to co-ordinate and provide enhanced health and social care services through Comprehensive Geriatric Assessment (CGA) and intervention working across a large geographical region. Methods New patients who underwent CGA from January–May 2023 were suitable for inclusion in this retrospective study. Key parameters including demographics, cognitive and functional status were recorded and analysed according to the following categories of clinical frailty scale (CFS); 1–3 (non-frail), 4–6 (frail) and ≥ 7 (severely frail). Results Of 249 patients who underwent CGA, 64% (n = 159) were female with a mean age of 82, and median MOCA score of 17. Reasons for referral were new or unexpected change in cognition (52%) frailty (40%) and falls (37%). Among this cohort 20% (n = 51) were non-frail, 71% (n = 177) were frail and 8.4% (n = 21) were severely frail. There was no significant difference in mean MOCA score by level of frailty (p = 0.49). Impairment in Instrumental Activities of Daily Living (IADL) was identified in 26% of non-frail, 77% of frail and 100% of severely frail patients. 27% of non-frail, 43% of frail and 33% of severely frail patients were living alone with carer strain reported in 70% of those with severe frailty. Informal care was regularly provided to 35% of non-frail, 60% of frail and 90% of severely frail patients. Conclusion Patients attending our service are frail, older and predominantly female. We identified a cohort who are not classified as frail but have cognitive impairment, are dependent for support in IADLs and reliant on informal care to allow them to live independently. In addition, we are supporting a severely frail, heavily dependent cohort and their caregivers. This demonstrates the complex case load within our ICPOP service which requires ongoing evaluation to ensure delivery of high quality person-centred interventions.

Promoting Activity, Independence, and Stability in Early Dementia and mild cognitive impairment (PrAISED): randomised controlled trial

ObjectiveTo determine the effectiveness of an exercise and functional activity therapy intervention in adults with early dementia or mild cognitive impairment compared with usual care.DesignRandomised controlled trial.SettingParticipants’ homes and communities...

Dangerous care: developing theory to safeguard older adults in caring relationships in the UK

PurposeMost abuse affecting older adults in the UK, as across Europe, takes place within caring relationships, where one person is disabled and needs care/support. This paper critically appraises two of the key theoretical explanations. First, feminist theories of “intimate partner abuse” tell us that it is mostly men who perpetrate abuse against women. Second, “carer strain”: the stress caused by caring responsibilities, often with inadequate help from services. Neither fully reflects the complex dynamics of “dangerous care” leading to a lack of voice and choice in safeguarding responses. This paper aims to articulate the need for an overarching theoretical framework, informed by a deeper understanding of the intersectional risk factors that create and compound the diverse experiences of harm by disabled people and family carers over the life course.Design/methodology/approachThe critical synthesis of the theoretical approaches informing UK policy and practice presented here arises from a structured literature review and discussions held with three relevant third sector agencies during the development of a research proposal.FindingsNo single theory fully explains dangerous care and there are significant gaps in policy, resources and practice across service sectors, highlighting the need for joint training, intersectional working and research across service sectors.Originality/valueDrawing both on existing literature and on discussions across contrasting policy and practice sectors, this paper raises awareness of some less well-acknowledged complexities of abuse and responses to abuse in later life.

Virtual wards: a rapid evidence synthesis and implications for the care of older people.

Virtual wards are being rapidly developed within the National Health Service in the UK, and frailty is one of the first clinical pathways. Virtual wards for older people and existing hospital at home services are closely related. In March 2022, we searched Medline, CINAHL, the Cochrane Database of Systematic Reviews and medRxiv for evidence syntheses which addressed clinical-effectiveness, cost-effectiveness, barriers and facilitators, or staff, patient or carer experience for virtual wards, hospital at home or remote monitoring alternatives to inpatient care. We included 28 evidence syntheses mostly relating to hospital at home. There is low to moderate certainty evidence that clinical outcomes including mortality (example pooled RR 0.77, 95% CI 0.60-0.99) were probably equivalent or better for hospital at home. Subsequent residential care admissions are probably reduced (example pooled RR 0.35, 95% CI 0.22-0.57). Cost-effectiveness evidence demonstrated methodological issues which mean the results are uncertain. Evidence is lacking on cost implications for patients and carers. Barriers and facilitators operate at multiple levels (organisational, clinical and patient). Patient satisfaction may be improved by hospital at home relative to inpatient care. Evidence for carer experience is limited. There is substantial evidence for the clinical effectiveness of hospital at home but less evidence for virtual wards. Guidance for virtual wards is lacking on key aspects including team characteristics, outcome selection and data protection. We recommend that research and evaluation is integrated into development of virtual ward models. The issue of carer strain is particularly relevant.

Mental health, stigma and psychologists’ lived experience of caring

PurposeMental health (MH) and caring can be demanding for those directly and indirectly impacted. An under-researched area is that of professionals’ personal experiences of caring for a loved one with MH difficulties. This study aims to provide an in-depth exploration of psychologists’ experiences of caring and its impact on clinical practice.Design/methodology/approachA total of 11 psychologists with experiences of caring for a loved one with a diagnosed MH condition and/or MH distress participated in semi-structured interviews focused on caring experiences and its impact. Transcripts were analysed using thematic analysis.FindingsThemes identified were as follows: personal and professional roles; the emergence of a carer identity; carer stress and strain; impact on professional practice; and dual positioning.Originality/valueThis study highlighted the knowledge and value of listening to professionals with lived experiences. Their ability to understand stigmatisation through personal caring experiences may facilitate the mitigation of this for vulnerable people attending clinical services.

‘Living the life of the other’: carers’ perspectives on changes in carer strain during the rehabilitation trajectory

The needs of carers are still poorly understood in medical rehabilitation research. This article explores the lived experience of carers and the adverse effects of caring throughout the different phases of the rehabilitation care trajectory in the Netherlands, based on in-depth interviews with couples where one partner has acquired brain injury or spinal cord injury. The findings reveal that carers’ needs vary during the rehabilitation trajectory, particularly because of varying availability or lack of ‘personal time’ and ‘personal space’. Acknowledging this may improve the assistance of carers, attuned to their evolving needs, and thereby contribute to improved future rehabilitation treatment.

342 THE DISCRIMINATORY VALUE OF ANP-LED CGA ON PATIENT REPORTED SYMPTOMS AND IMPACT ON CARERS: A CROSS-SECTIONAL STUDY

Abstract Background Comprehensive Geriatric Assessment (CGA) is a cornerstone in geriatric care. Objective findings from CGA may differ to patient and carer reported symptoms. This study compared patient reported symptoms with objective metrics collected during CGA and explored the relationship with carer burnout. Methods Cross-sectional study of patients attending an Advanced Nurse Practitioner (ANP)-led integrated care clinic. Patient-reported geriatric syndromes included low mood, memory concerns, incontinence, falls or dizziness. CGA metrics collected included Barthel Index, Lawton IADLs, MOCA scores, Geriatric depression scale scores, Rockwood Clinical Frailty Scale (CFS) scores and presence or absence of carer burnout. Descriptive statistics were used to compare the relationship between these variables and logistic regression explored the magnitude of association with carer burnout. Results We reviewed 99 CGAs over three months. Median age was 81 (IQR 75–86) with 62% female. Cognitive impairment was present in 96% of patients. Self-reported memory trouble was associated with lower MOCA scores (9 vs 23, p < 0.001) and the presence of dizziness was associated with an increased prevalence of falls (89% vs 24%, < 0.001). The presence of incontinence and functional dependency on IADL were both associated with carer strain and a larger magnitude of association with carer strain was seen with increasing frailty (OR 13.7, 95% CI 3.8-58.8 for moderate to severe frailty) than moderate to severe cognitive impairment (OR 8, 95% CI 3.0–24.1) Conclusion Older people reported a wide range of symptoms often subtle, some of which are unmasked during CGA. The resultant frailty syndromes often represent increasing degrees of functional impairment impacting on patient and carer quality of life. Striking the balance between patient reported symptoms and objective measurement is important to allow individualised care pathways to be developed as well as highlighting patients at risk of functional and cognitive decline.

355 PREDICTORS OF HOME SUPPORT SERVICES AND THE CONSEQUENCES OF MISMATCH BETWEEN ALLOCATED AND RECEIVED SERVICES IN COGNITIVELY-IMPAIRED OLDER ADULTS

Abstract Background Home support services aim to support older people to remain at home. Despite substantial investment in home support hours (€600 million), this has not translated into increased carers on the ground for older people. We aimed to report patterns of home support service utilisation in older patients with memory problems, and identify any mis-matches between allocated and received hours, and the impact on patients and caregivers. Methods Retrospective analysis of consecutive patients referred to community geriatric clinic from January 2021 to May 2022. 95/104 patients who were identified were suitable for inclusion. Results Participants had a median age of 82 (IQR 78-86) of whom 57% were female (n=54). 80% (n=76) were frail (CFS ≥4), with 82% dependent for IADLs (Lawton-Brody IADL Scale ≤6). Median MOCA score was 18, with 44% having moderate to severe cognitive impairment (MOCA ≤17). 40% of patients lived with alone (n=38). 52% (n=49) received formal home supports while 80% (n=76) had an informal carer. 37% (n=18) had a mismatch between hours allocated and hours received. There was a significant difference between median hours of care allocated (7) and median hours of care received (5), p <0.001. Increasing age and frailty, worsening cognitive and functional impairment and living status (living alone) predicted allocation of home supports. Patients who lived with family members were 3 times more likely not to receive allocated hours (OR 3.84 (95% CI 1.2–13.7)) Conclusion In this vulnerable population with cognitive and functional decline, just over half received formal home support hours. A large proportion experienced significant mismatch between allocated and received hours. Family and informal caregivers often have to fill gaps, adding to existing carer strain. Future models of home support should prioritise early intervention for people with IADL loss to remain independent at home and broaden of the scope of practice of carers to facilitate this.

Statistical analysis plan for the stepped wedge clinical trial Healing Right Way—enhancing rehabilitation services for Aboriginal Australians after brain injury

BackgroundAboriginal Australians are known to suffer high levels of acquired brain injury (stroke and traumatic brain injury) yet experience significant barriers in accessing rehabilitation services. The aim of the Healing Right Way trial is to evaluate a culturally secure intervention for Aboriginal people with newly acquired brain injury to improve their rehabilitation experience and quality of life. Following publication of the trial protocol, this paper outlines the statistical analysis plan prior to locking the database. MethodsThe trial involves a stepped wedge design with four steps over 3 years. Participants were 108 adult Aboriginal Australians admitted to one of eight hospitals (four rural, four urban) in Western Australia within 6 weeks of onset of a new stroke or traumatic brain injury who consented to follow-up for 26 weeks. All hospital sites started in a control phase, with the intervention assigned to pairs of sites (one metropolitan, one rural) every 26 weeks until all sites received the intervention. The two-component intervention involves training in culturally safe care for hospital sites and enhanced support provided to participants by Aboriginal Brain Injury Coordinators during their hospital stay and after discharge. The primary outcome is quality of life as measured by the Euro QOL–5D-3L VAS. A mixed effects linear regression model will be used to assess the between-group difference at 26 weeks post-injury. The model will control for injury type and severity, age at recruitment and time since commencement of the trial, as fixed effects. Recruitment site and participant will be included as random effects. Secondary outcomes include measurements of function, independence, anxiety and depression, carer strain, allied health occasions of service received and hospital compliance with minimum processes of care based on clinical guidelines and best practice models of care.DiscussionThe trial will provide the first data surrounding the effectiveness of an intervention package for Aboriginal people with brain injury and inform future planning of rehabilitation services for this population. The statistical analysis plan outlines the analyses to be undertaken.Trial registrationAustralia New Zealand Clinical Trials Registry ACTRN12618000139279. Registered 30 January, 2018.

Experiences of Carers and People with Dementia from Ethnic Minority Groups Managing Eating and Drinking at Home in the United Kingdom.

Eating and drinking difficulties, such as loss of appetite and swallowing problems, are common in dementia, but little is known about the experiences of ethnic minority groups who are managing these difficulties at home. The purpose of our study was to explore the meaning of food, the impact of dementia on eating and drinking, and carers’ experiences of support. We undertook semi-structured interviews with 17 carers and people with dementia from ethnic minority backgrounds living in England, using thematic analysis to analyse the data. Food/drink had strong links to identity, culture and emotions. Providing culturally familiar foods, celebrating traditional festivals and supporting previous food-related roles promoted reminiscence, which encouraged the people living with dementia to eat and drink, as did social interactions, although these could lead to distress in those with more advanced dementia. Food choices were also influenced by carer strain, generational differences and the impact of health conditions. Despite a strong sense of duty to care for relatives at home, there was low awareness of community support services. The carers expressed a need for culturally tailored support for managing dementia-related eating and drinking difficulties at home. Healthcare professionals must provide contextually relevant advice to carers, being mindful of how cultural backgrounds can affect dietary choices.

Service Evaluation Exploring the Use of Standardised Assessment Tools to Assess Non-Cognitive Symptoms of Dementia

AimsPain, depression, anxiety, and psychosis are common non-cognitive symptoms of dementia. They are often underdiagnosed and can cause significant distress and carer strain. Numerous standardised assessment tools (SATs) exist and are recommended for the assessment of non-cognitive symptoms of dementia. Anecdotal evidence suggests that SATs are used rarely and inconsistently. This study aims to explore which SATs to detect non-cognitive symptoms of dementia are recommended in local guidelines and used in practice across different organisations. Secondary aims were to identify barriers and facilitators to using these tools.MethodsThis service evaluation is cross-sectional in design. A questionnaire was developed and distributed to clinicians working with patients with advanced dementia in any setting, across four geographical locations (Leeds, Bradford, Hull, and Cambridge). Quantitative data were analysed descriptively, and qualitative data from free-text comments were interpreted using thematic analysis.Results135 professionals from a range of backgrounds and clinical settings completed the survey. Respondents indicated that SATs for non-cognitive symptoms in dementia were rarely used or recommended. Respondents were unaware of the existence of most SATs listed. 80% respondents felt that SATs were a useful adjunct to a structured clinical assessment. The most recommended tool was the Abbey Pain Scale, with 41 respondents indicating its recommendation by their Trust. Perceived facilitators to using SATs include education and training, reliable IT systems and accessibility. Barriers include lack of time and training.ConclusionNumerous SATs are available for use in dementia, but they are rarely recommended in local policy or used in practice. There appears to be a lack of consensus on which, if any, are superior diagnostic tools, and on how or when they should be applied.

A multicentre evaluation exploring the impact of an integrated health and social care intervention for the caregivers of ICU survivors

BackgroundCaregivers and family members of Intensive Care Unit (ICU) survivors can face emotional problems following patient discharge from hospital. We aimed to evaluate the impact of a multi-centre integrated health and social care intervention, on caregiver and family member outcomes.MethodsThis study evaluated the impact of the Intensive Care Syndrome: Promoting Independence and Return to Employment (InS:PIRE) programme across 9 sites in Scotland. InS:PIRE is an integrated health and social care intervention. We compared caregivers who attended this programme with a contemporary control group of ICU caregivers (usual care cohort), who did not attend.ResultsThe primary outcome was anxiety measured via the Hospital Anxiety and Depression Scale at 12 months post-hospital discharge. Secondary outcome measures included depression, carer strain and clinical insomnia. A total of 170 caregivers had data available at 12 months for inclusion in this study; 81 caregivers attended the InS:PIRE intervention and completed outcome measures at 12 months post-hospital discharge. In the usual care cohort of caregivers, 89 completed measures. The two cohorts had similar baseline demographics. After adjustment, those caregivers who attended InS:PIRE demonstrated a significant improvement in symptoms of anxiety (OR: 0.42, 95% CI: 0.20–0.89, p = 0.02), carer strain (OR: 0.39; 95% CI: 0.16–0.98 p = 0.04) and clinical insomnia (OR: 0.40; 95% CI: 0.17–0.77 p < 0.001). There was no significant difference in symptoms of depression at 12 months.ConclusionsThis multicentre evaluation has shown that caregivers who attended an integrated health and social care intervention reported improved emotional health and less symptoms of insomnia, 12 months after the delivery of the intervention.

‘I’m not a failure for asking for help’: A mixed method service evaluation of Strategies for Relatives (START) programme

The STrAtegies for RelaTives (START) programme was developed by Livingstone et al. (2014) to address the gap in NHS interventions available for carers of People Living With Dementia (PLWD) in the United Kingdom. Previous research by Conway and Straughan (2017) suggested that the programme was clinically effective in improving quality of life and carer stress for family members caring for those with dementia, within local NHS mental health services. The current study offers a mixed method evaluation of the START programme in the North East of England, including t-tests of pre- and post-outcome data (N= 24) and qualitative semi-structured interviews with carers of People Living With Dementia (n= 6). Outcome measures demonstrated statistically significant improvements in carer quality of life and wellbeing, as well as a significant reduction in carer strain, post intervention. Therefore, the findings offer further support as to the benefits of the START programme identified by previous research. During semi-structured interviews, carers described profound emotional changes captured in themes of reducing guilt, realising their caring abilities, and feeling more able to reach out for support. These benefits had not been captured during previous research by Conway and Straughan (2017). The results of this study provide further evidence of the benefits of the START programme within local NHS services in improving carer wellbeing.