Loneliness and social isolation among informal carers of individuals with dementia: A systematic review and meta-analysis.

OBJECTIVES: This systematic review and meta-analysis aimed to determine the prevalence of loneliness and social isolation among informal carers of individuals with dementia and to identify potential influencing factors. METHODS: We conducted a comprehensive search across 10 electronic databases, including PubMed, Cochrane, Embase, Web of Science, PsycINFO, CINAHL, Scopus, Chinese Biomedical, China National Knowledge Internet, and WANFANG. Our search strategy covered the inception of the databases up to September 16, 2023, with an updated search conducted on March 8, 2024. Prevalence estimates of loneliness and social isolation, presented with 95% confidence intervals, were synthesized through meta-analysis. Subgroup analyses and meta-regression were employed to explore potential moderating variables and heterogeneity. RESULTS: The study encompassed 27 research papers involving 11,134 informal carers from 17 different countries. The pooled prevalence of loneliness among informal carers of individuals with dementia was 50.8% (95% CI: 41.8%-59.8%), while the pooled prevalence of social isolation was 37.1% (95% CI: 26.7%-47.6%). Subgroup analyses and meta-regression indicated that various factors significantly influenced the prevalence of loneliness and social isolation. These factors included the caregiving setting, study design, the intensity of loneliness, geographical location (continent), data collection time, and the choice of assessment tools. CONCLUSIONS: This study underscores the substantial prevalence of loneliness and social isolation among informal carers of individuals with dementia. It suggests that policymakers and healthcare providers should prioritize the development of targeted interventions and support systems to alleviate loneliness and social isolation within this vulnerable population.

Navigating complexity of the medication management system within the home setting-a functional resonance analysis method (FRAM) analysis of people with dementia and their carers' experiences.

BACKGROUND: There is a strong imperative to support people with dementia to live independently in their homes for as long as possible. A starting point is to understand how they manage medications on a daily basis. AIM: To understand how people with dementia and their informal carers manage medications within the home setting to inform the identification of opportunities to improve medication management. METHODS: A qualitative study using the Functional Resonance Analysis Method (FRAM). Interview data with people with dementia and informal carers were analysed to (i) Identify and describe key functions, (ii) identify and describe variability in performing key functions, and its potential consequences and (iii) map performance variability to Resilient Healthcare capacities. RESULTS AND DISCUSSION: A FRAM model was developed and consisted of 14 interdependent key functions. The interdependent nature of functions, and the different nature and sources of variability in how each key function was performed highlighted the level of complexity of the medication management system within the home setting. The medication system was managed almost entirely by the person with dementia and/or their informal carers. This shows the lack of system-level controls to support the safe functioning of the medication management system in the home setting. CONCLUSION: Future work will develop a comprehensive FRAM model that includes the perspectives of health and social care professionals and those from the third sectors to underpin the development of a range of system recommendations to strengthen resilience in the medication management system within the home setting.

The cost of providing care by family and friends (informal care) in the last year of life: A population observational study.

INTRODUCTION: Little is known about replacement costs of care provided by informal carers during the last year of life for people dying of cancer and non-cancer diseases. AIM: To estimate informal caregiving costs and explore the relationship with carer and decedent characteristics. DESIGN: National observational study of bereaved carers. Questions included informal end-of-life caregiving into the 2017 Health Survey for England including estimated recalled frequency, duration and intensity of care provision. We estimated replacement costs for a decedent's last year of life valuing time at the price of a substitutable activity. Spearman rank correlations and multivariable linear regression were used to explore relationships with last year of life costs. SETTING/PARTICIPANTS: Adult national survey respondents - England. RESULTS: A total of 7997 adults were interviewed from 5767/9612 (60%) of invited households. Estimated replacement costs of personal care and other help were £27,072 and £13,697 per carer and a national cost of £13.2 billion and £15.5 billion respectively. Longer care duration and intensity, older age, death at home (lived together), non-cancer cause of death and greater deprivation were associated with increased costs. Female sex, and not accessing 'other care services' were related to higher costs for other help only. CONCLUSION: We provide a first adult general population estimate for replacement informal care costs in the last year of life of £41,000 per carer per decedent and highlight characteristics associated with greater costs. This presents a major challenge for future universal care coverage as the pool of people providing informal care diminish with an ageing population.

The prevalence, characteristics, and psychological wellbeing of unpaid carers in the United Kingdom.

BACKGROUND: This study sought to describe the characteristics of unpaid carers in the UK and assess levels of depression, anxiety, and mental health treatment seeking behaviours in this population. METHODS: Data was derived from Wave 9 (n = 2790) of the COVID-19 Psychological Research Consortium (C19PRC) study, a longitudinal survey of adults in the UK. Logistic regression analyses were conducted to examine the characteristics of unpaid carers, association between caregiver status and psychological wellbeing, and caregiver-specific factors associated with risk of poor psychological wellbeing. RESULTS: Approximately 15% (n = 417) of the sample reported providing unpaid care. Younger age, having three or more children in the household, and lower income were identified as significant correlates of caregiver status. Unpaid caregivers were at increased risk of depression or anxiety and mental health help-seeking. Unpaid caregivers who were younger, lived in households with one or two children, and had a lower income were at greater risk of depression or anxiety and engaging in mental health help-seeking. Caring for an individual with a terminal illness, long-term illness, learning disability or difficulty, mental health problems, physical disability, and other were linked to increased risk of depression or anxiety, while caring for someone with a learning disability increased risk of mental health help-seeking. CONCLUSIONS: This study indicates that at least one in eight people in the UK provide unpaid care, and that those who provide unpaid care have a far higher risk of experiencing depression or anxiety and seeking mental health treatment. The identification of risk factors associated with these mental health outcomes will facilitate the identification of those in most need of support.

Designing an mHealth application for informal carers concerning the management of behavioural and psychological symptoms of dementia: a need analysis survey.

BACKGROUND: Informal carers face difficulties and challenges when dealing with the behavioural and psychological symptoms of dementia (BPSD) of their family members or friends residing at home. Mobile health (mHealth) applications are promising for educating and supporting carers. However, needs analysis studies have not been conducted in Sri Lanka to develop mHealth applications for informal carers of people with dementia. AIMS: To explore the needs to design an mHealth application for informal carers of people with dementia concerning the management of BPSD. METHOD: An exploratory cross-sectional survey was conducted among a convenience sample (N = 203) of informal carers as a part of developing an mHealth application. Family members, relatives, or friends who lived with people with dementia and provided care on an unpaid basis for more than three months were included. The questionnaire included sociodemographic data, carer-rated prevalence and severity of BPSD, and informal carers' knowledge of dementia, carer burden, information-seeking sources, availability of smartphones, mHealth information seeking and perception of mHealth information seeking related to managing BPSD. Descriptive analysis and inferential tests were performed. RESULTS: Informal carers of people with dementia were predominantly female (70.4%), and 64% showed low knowledge of dementia. Of the participants, 35% reported a high carer burden, 53.7% reported a low burden, and only 11.3% reported no carer burden. Most of their care recipients (97%) had at least one BPSD. The prevalence and severity of BPSD were significantly and positively correlated with the carer burden. The participants' main source of information was health professionals. Most of them owned smartphones (63.5%), but none used mHealth applications for dementia-related information seeking. Approximately half of the respondents were ready to spend time (52.7%) and money (46.8%) on mHealth information seeking. Perceived mHealth usefulness was significantly associated with dementia knowledge, smartphone ownership, and readiness to spend time and money on mHealth information seeking. CONCLUSION: Informal carers of people with dementia were affected by BPSD in their care recipients. This study explored carers' educational needs concerning dementia, BPSD, and carer burden. Informal carers could adapt mHealth for dementia-related information seeking. Their unmet needs in managing BPSD should be explored.

Patients with mesothelioma and their carer's experience of diet and appetite: A qualitative insight from the Help-Meso Study.

BACKGROUND: People living with mesothelioma have a high symptom burden that can affect dietary intake and the development of malnutrition, subsequently impacting on patient-related and treatment outcomes. The present study aimed to develop a better understanding of the experiences of diet and appetite in people living with mesothelioma and their informal carers. METHODS: Twenty-three participants took part in semistructured interviews including 12 people living with mesothelioma (10 pleural and 2 peritoneal) aged 56-83 years and 12 informal carers, predominantly their spouses. Open ended questions focussed on experiences of appetite and diet, as well as approaches to maintain adequate food intake. Thematic analysis was applied. RESULTS: Four themes were generated that included unintentional weight loss and poor appetite during diagnosis and when undergoing medical intervention. Participants managed their appetite and diet by taking each day at a time and this was influenced by the physical and emotional experiences of mesothelioma. The informal carer took on the lead role of managing their relatives' diet and implemented their own nutritional strategies and there were challenges with dietary advice. CONCLUSIONS: Appetite was viewed as a multidimensional experience and was grounded within the biopsychosocial model. The findings offer important insights into opportunities informing the development of effective interventions that provide meaningful benefits for individuals living with mesothelioma and their family.

Developing a best-practice agenda for music therapy research to support informal carers of terminally ill patients pre- and post-death bereavement: a world café approach.

BACKGROUND: Informal carers of terminally ill patients play a vital role in providing palliative care at home, which impacts on their pre- and post-death bereavement experience and presents an up to 50% greater risk for mental-health problems. However, developing and implementing effective bereavement support remains challenging. There is a need to build the evidence base for music therapy as a potentially promising bereavement support for this vulnerable population. This study aimed to co-design an international best practice agenda for research into music therapy for informal carers of patients pre- and post-death bereavement. METHODS: Online half day workshop using a World Café approach; an innovative method for harnessing group intelligence within a group of international expert stakeholders (music therapy clinicians and academics with experience of music therapy with informal carers at end-of-life). Demographics, experience, key priorities and methodological challenges were gathered during a pre-workshop survey to inform workshop discussions. The online workshop involved four rounds of rotating, 25-minute, small group parallel discussions using Padlet. One final large group discussion involved a consensus building activity. All data were analysed thematically to identify patterns to inform priorities and recommendations. RESULTS: Twenty-two consented and completed the pre-event survey (response rate 44%), from countries representing 10 different time zones. Sixteen participated in the workshop and developed the following best practice agenda. The effectiveness of music therapy in supporting informal carers across the bereavement continuum should be prioritised. This should be done using a mixed methods design to draw on the strengths of different methodological approaches to building the evidence base. It should involve service users throughout and should use a core outcome set to guide the choice of clinically important bereavement outcome measures in efficacy/effectiveness research. CONCLUSIONS: Findings should inform future pre- and post-death bereavement support research for informal caregivers of terminally ill patients. This is an important step in building the evidence base for commissioners and service providers on how to incorporate more innovative approaches in palliative care bereavement services.

Steps to implementation: Understanding barriers and enablers for implementing Arts on Prescription at Home for people impacted by dementia.

ISSUE ADDRESSED: Arts on Prescription at Home (AoP@Home) involves a professional artist visiting a person with dementia and their informal carer(s) in their own home to engage them in participatory art making. While there is evidence for the use of these programs, more work is needed to facilitate effective implementation. This study explored contextual barriers and enablers to implementation of AoP@Home within a real-world community aged care service. METHODS: Two remote focus groups were conducted at a community aged care provider in Sydney, Australia. Key stakeholders (n = 14) were recruited, representing: people with dementia, informal (family) carers, AoP artists, service referrers and community service managers. Focus group transcripts were analysed using qualitative content analysis and mapped onto the Consolidated Framework for Implementation Research (CFIR). Outcomes were reviewed against the Expert Recommendations for Implementing Change (ERIC) strategy compilation to inform development of a tailored implementation strategy. RESULTS: Four overarching themes described the range of barriers and enablers to AoP@Home implementation: (1) "I don't know enough about it" (awareness and engagement within the sector), (2) artists delivering programs, (3) awareness and engagement of people impacted by dementia, (4) practicalities of implementation. All five domains of the CFIR were represented across the four themes. The ERIC compilation provided a list of practical strategies for implementation of AoP@Home. CONCLUSIONS: The implementation of psychosocial interventions for people living with dementia within a community aged care service is complex and multifactorial. So what?: Organisations planning implementation should consider conducting their own pre-implementation analysis to identify context-specific strategies.

Implementation of an Arts at Home program for people living with dementia: Learnings from key stakeholders.

ISSUE ADDRESSED: This study explores experiences of people with dementia and family carers who participated in an Arts on Prescription at Home (AoP@Home) program, artists who delivered the AoP@Home program and the managers who coordinated the AoP@Home programs. METHODS: Semi structured interviews were conducted with the three stakeholder groups to explore experiences around implementation of AoP@Home. Interview questions were specific to each stakeholder group, and designed to capture the varied experiences around coordinating, delivering and participating in AoP@Home programs when delivered as a standard service offering. Qualitative content analysis was applied to evaluate the transcripts. RESULTS: A total of 13 stakeholders participated in interviews: four people living with dementia and four family carers, three artists and two AoP program managers. Three overarching themes emerged across the stakeholder groups: 'what worked well', 'challenges' and 'moving forward'. CONCLUSIONS: AoP@Home has potential as an important offering for community-dwelling people with dementia who may no longer be able to access group-based community programs. As AoP@Home is expanded, ongoing implementation monitoring and quality improvement will be essential to ensure maximal applicability of the program across the community aged care sector. SO WHAT?: The implementation of a new AoP@home service has been examined, and finds consumer satisfaction (person with dementia and their carer), and support from staff (artists and program managers). The novel nature of the service, however, requires considerable work to educate service referrers about the service and its benefits.

The Acceptability and Usefulness of Positive Behaviour Support Education for Family Carers of People With Frontotemporal Dementia: A Pilot Study.

AIM: This pilot study investigated the acceptability and usefulness of 4 weekly Positive Behaviour Support (PBS) education sessions (delivered face-to-face and online) for family carers of individuals diagnosed with behavioural-variant frontotemporal dementia (bvFTD). These sessions were adapted from the Family-directed Approach to Brain injury (FAB)-PBS program to the FTD population. METHODS: A pre-test post-test mixed-methods design was utilized. Primary outcome measures included a Carer Confidence questionnaire and post-intervention Feedback Questionnaire. Assessments were conducted prior to the 4-week education program, immediately following the final session and a 3 months follow-up. RESULTS: Ten family carers completed the 4 PBS education sessions and indicated that the program was helpful in providing behaviour support. No significant changes in confidence ratings were found before and following the education sessions. A majority of participants, however, reported positive changes to their approach in providing behaviour support, with key themes including 'recognising the function of behaviour', 'changing their own behaviour' and 'promoting a calmer approach'. CONCLUSIONS: The FAB-PBS education sessions demonstrate to be an acceptable approach to increasing the capability of family carers in providing behaviour support to individuals with FTD, which will need to be confirmed in a larger feasibility study.

Informal carer support needs, facilitators and barriers in transitional care for older adults from hospital to home: A scoping review.

AIM: To synthesise evidence about informal carers' (carers) experience of their support needs, facilitators and barriers regarding transitional care of older adults with multimorbidity. BACKGROUND: Carers provide crucial support for older adults during care transitions. Although health practitioners are well positioned to support carers, system factors including limited healthcare resources can compromise the quality of care transitions. DESIGN: Scoping review. METHODS: Searches were undertaken of the published literature. Five databases were searched including MEDLINE, CINAHL, EMBASE, PsycINFO and the Cochrane Library. Two reviewers independently screened articles to identify relevant studies. Studies were retrieved from January 2000 to July 2022. Data were extracted and tabulated for study characteristics, support needs, facilitators and barriers. Key themes and patterns were synthesised across the studies. RESULTS: Eighteen studies including N = 3174 participants were retrieved. Most studies (n = 13) employed qualitative designs. Five studies used surveys. Carers reported their need to: be involved in coordinated discharge planning; advocate and be involved in decision-making; and receive community-based follow-up. Carers described facilitators and barriers in four themes: (1) relationships with the older adult and health practitioners, (2) being involved in coordinated discharge planning; (3) communication and information strategies; and (4) community-based follow-up. Synthesis of themes across all studies resulted in the identification of five areas of research: carers' health literacy; community-based care; carers' involvement in transitional care planning; inpatient and community health practitioners' communication skills; and culturally diverse carers' experiences. CONCLUSION AND RELEVANCE TO CLINICAL PRACTICE: The review highlights the importance of quality communication and relationships between carers, older adults, health practitioners and health organisations. Although information and education are important there is a need for further research to examine systems that support communication between carers, older adults and health practitioners and health literacy for all carers including culturally diverse carers.

Extent of caregiver burden among informal caregivers of persons with severe mental disorders in rural South Africa.

INTRODUCTION: Informal caregivers are the backbone of recovery for people with severe mental disorders in South Africa, particularly in rural areas where access to mental health services is limited. While their unique contribution and the subsequent burden arising from occupying the role of informal caregiver are acknowledged, there is limited evidence on the extent of the subjective and objective burdens among informal caregivers of people with severe mental disorders in rural areas. This article reports on a study that aimed to establish the extent of subjective and objective burdens among informal caregivers of people with severe mental disorders in rural South Africa. METHODS: A descriptive quantitative cross-sectional design was used. Data were gathered through structured interviews with 170 informal caregivers of people with severe mental disorders attending an outpatient clinic at a rural hospital in South Africa. A structured questionnaire guided the interviews and included demographics and caregiving characteristic information. Montgomery, Gonyea and Hooyman's scale was used to assess objective and subjective burdens. Data was analysed descriptively using Stata v15. RESULTS: The majority of the participants were female informal caregivers (83.5%) between the ages of 45 and 64 years (45.3%), and parents represented the largest proportion (45.3%) of caregivers. The global burden scores revealed that most informal caregivers reported moderate-to-severe objective burden and mild-to-moderate subjective burden. Significant associations with objective burden were established for age, gender and residence (p=0.025, p=0.034 and p=0.038, respectively), and subjective burden yielded significant associations with daily caregiving (p=0.012). CONCLUSION: Caring for people with severe mental disorders is associated with high levels of objective and subjective burdens. The present study highlights the need to integrate the assessment of burdens among informal caregivers of people with severe mental disorders in routine clinical practice. Additionally, the study urgently calls for the development of strategies to support informal caregivers to ensure successful community reintegration among people with severe mental disorders.

Qualitative Review on Domains of Quality of Life Important for Patients, Social Care Users, and Informal Carers to Inform the Development of the EQ-HWB.

OBJECTIVES: To identify the themes to inform the content of a new generic measure, the EQ-HWB (EQ Health and Wellbeing), that can be used in economic evaluation across health, social care, and public health, based on the views of users and beneficiaries of these services including informal carers. METHODS: A qualitative review was undertaken. Systematic and citation searches were undertaken focusing on qualitative evidence of the impact on quality of life from reviews for selected health conditions, informal carers, social care users, and primary qualitative work used in the development of selected measures. A subset of studies was included in the review. Framework analysis and synthesis were undertaken based on a conceptual model. RESULTS: A total of 42 reviews and 24 primary studies were selected for inclusion in the review. Extraction and synthesis resulted in 7 high-level themes (with subthemes): (1) feelings and emotions (sadness, anxiety, hope, frustration, safety, guilt/shame); (2) cognition (concentration, memory, confusion, thinking clearly); (3) self-identity (dignity/respect, self-esteem); (4) "coping, autonomy, and control" relationships; (5) social connections (loneliness, social engagement, stigma, support, friendship, belonging, burden); (6) physical sensations (pain, discomfort, sleep, fatigue); and (7) activity (self-care, meaningful activities, mobility, communication, hearing, vision). Apart from physical sensations, most of the other themes and subthemes were relevant across both health and social care, including for informal carers. CONCLUSIONS: The findings from this broad review identified themes that go beyond health and that are relevant to patients, informal carers, and social care users. The themes and subthemes informed the domains for the EQ-HWB.

Exploring the experiences and psychosocial support needs of informal carers of men with breast cancer: a qualitative study.

PURPOSE: The provision of practical and emotional support for men who have been diagnosed with breast cancer in the UK falls primarily on their partners, close family members or friends. However, informal carers' experiences are omitted from the research literature. Therefore, the present study aimed to explore the care-giving experiences of informal carers (ICs) of men with breast cancer in the UK and identify psychosocial support needs and preferences. METHODS: Semi-structured interviews, conducted on the telephone or via online video calls, explored ICs' experiences of providing support, the psychosocial issues they faced and the impact of the illness on themselves and their relationship with the patient. They were also asked about any support previously offered to them, in addition to their support preferences. Twelve ICs participated (11 females, 1 male), and 9 were spouses. Interview transcripts were analysed with reflexive thematic analysis using NVIVO software. RESULTS: Four key themes were identified: "The impact of caring", "Lack of awareness", "Isolated and alone" and "Making a difference". CONCLUSIONS: The physical, emotional, financial and social impact of providing emotional and practical care and support for a man diagnosed with breast cancer can be considerable. ICs may experience significant levels of distress and often feel isolated. Greater awareness and more research is needed to better understand the psychosocial impact and support needs for ICs of men with breast cancer. There is an evident necessity to address their information needs and offer sources of support throughout the cancer journey.

Feasibility of an online training and support program for dementia carers: results from a mixed-methods pilot randomized controlled trial.

BACKGROUND: iSupport is an online program developed by the World Health Organization to provide education, skills training, and social support to informal carers of persons with dementia. This pilot study examines the feasibility of the protocol for a main effectiveness trial of iSupport-Portugal and explores how the intervention and control arms compare over time on well-being outcomes. METHODS: A mixed-methods experimental parallel between-group design with two arms is followed. Participants were recruited nationwide, by referral or advertising, through the National Alzheimer's Association. Inclusion criteria are being Portuguese adults, providing e-consent, providing unpaid care to someone with dementia for at least 6 months, experiencing relevant scores on burden (≥ 21 on ZBI) or depression or anxiety (≥ 8 on HADS), and using webpages autonomously. Participants were consecutively randomized to receive iSupport-Portugal or an education-only e-book and were not blinded to group assignment. Data were collected online with self-administered instruments, at baseline, 3 and 6 months after. Outcomes comprise caregiver burden, depression, anxiety, QoL, positive aspects of caregiving, and self-efficacy. Generalized estimating equations were used to estimate group, time, and group-by-time effects. Intervention engagement data were extracted from iSupport's platform. Semi-structured interviews were conducted. RESULTS: Forty-two participants were allocated to the intervention (N = 21) and control (N = 21) arms. Participation (78.1%) and retention rates (73.8%) were fair. More carers in the control arm completed the study (N = 20, 95.2%) than in the intervention arm (N = 11; 52.4%) (χ2 = 9.98, p = .002). Non-completers were younger, spent less time caring, and scored higher on anxiety. Among carers in the intervention arm, the average attendance rate was of 53.7%. At post-test 38.9% of participants still used iSupport; the remainder participants interrupted use within 2 weeks (Mdn). For per-protocol analyses, significant group-by-time interaction effects favouring the intervention were found for anxiety (Wald χ2 = 6.17, p = .046) and for environmental QoL (Wald χ2 = 7.06, p = .029). Those effects were not observed in intention-to-treat analyses adjusted for age. Interviewees from the intervention arm (N = 12) reported positive results of iSupport on knowledge and on experiencing positive feelings. No adverse effects were reported. CONCLUSIONS: This study provides information for a forthcoming full-scale effectiveness trial, as on the acceptability and potential results of iSupport-Portugal. iSupport is suggested as a relevant resource for Portuguese carers. TRIAL REGISTRATION: ClinicalTrials.gov, NCT04104568 . 26/09/2019.

A systematic review and narrative synthesis of the experiences with caring for older people living with dementia in Sub-Saharan Africa.

BACKGROUND: In low- and middle-income countries, including sub-Saharan Africa little is known about the experiences with caring for people living with dementia. The purpose of this systematic review and narrative synthesis was to examine the experiences with caring for older people living with dementia at home. RESULTS: In total, 366 abstracts were identified and following screening, 19 studies were included in the synthesis. Six themes were identified: conceptualising dementia, caregiving arrangements, the impact of caregiving, caregiver identity and role, managing caregiving, unmet caregiver needs. CONCLUSION: There is a dearth of research in relation to caregiving for older people living with dementia in sub-Saharan Africa. There is need for better information campaigns and support programs directed at family and professional caregivers in this context.

Supporting behaviour change in younger-onset dementia: mapping the needs of family carers in the community.

OBJECTIVES: Almost 10% of people with dementia experience a younger-onset of disease (before 65 years). Changes in behaviour are common, as are delays in diagnosis and limited access to appropriate support and services. This study aimed to explore the specific behaviour support needs of families living with younger-onset dementia. METHODS: Seventy-one families of people with younger-onset dementia were surveyed to understand the experience of family carers regarding difficult-to-manage behaviour changes, confidence in identifying and implementing behaviour support strategies, use of specific behaviour support strategies, and use of formal and informal support services regarding behaviour changes. RESULTS: Survey responses were received from family members of people living with behavioural variant frontotemporal dementia (n = 28), semantic dementia (n = 17), and Alzheimer's disease (n = 23). Over 90% of family carers reported difficult-to-manage behaviours which fell into four main domains: (1) aggression, (2) compulsive behaviour, (3) disinhibition and inappropriate social behaviour, and (4) apathy. A range of preventative and responsive strategies, with an emphasis on de-escalation strategies were identified and carers reported variable confidence in managing behaviour changes or in accessing formal support strategies. CONCLUSIONS: Difficult-to-manage behaviour changes in community-dwelling people with younger-onset dementia are common. The existing agency of families should be recognised and built upon with better access to specific behaviour support services to increase competence and confidence in providing behaviour support and ultimately improve quality of life for them and their family member with dementia.

Patients' and carers' perspective of the impact of heart failure on quality of life: a qualitative study.

Heart failure (HF) is a syndrome associated with high mortality and morbidity. HF patients tend to be at a high risk of poor clinical and psychosocial outcomes. This study aimed to capture patients' and carers perspectives of HF, the impact on their health reported QoL, and the factors associated with their poor health outcomes. To explore HF patients' and carers' views on their QoL since diagnosis. This study used a cross-sectional, qualitative design with semi-structured interviews conducted with participating patients and carers. Thirteen adults (> 18 years) with HF and 21 carers were interviewed over the telephone, following a semi-structured interview schedule. Interviews were transcribed verbatim and analysed using inductive thematic analysis. Three main themes were identified, with an overarching theme . Themes included impact on patients' lifestyle including diet, smoking and inability to part-take in social activities, adjusting to HF diagnosis and co-morbidity management, and psychological/mental health issues such as anxiety and depression. Patients with HF are at high-risk of various issues which can negatively impact their QoL. Additionally, Carers play a vital role in the management of HF patients. Effective patient centred care and better communication between patients, carers and healthcare professionals is vital in HF management.

Psychosocial vulnerability among carers of persons living with a chronic illness: A scoping review.

AIMS: To outline and examine evidence related to the meaning of 'psychosocial vulnerability' among caregivers of persons with chronic illnesses. BACKGROUND: The number of informal caregivers continues to rise globally. Their risk of psychosocial vulnerability is frequently overlooked, but understanding their psychosocial vulnerability may offer insights into meeting their needs. DESIGN: Scoping review following the PRISMA 2020 extension guidelines. DATA SOURCES: The databases CINAHL, Embase, Medline/Pubmed, Cochrane Library, PsycINFO, Web of Science, Google Scholar, Lenus and ProQuest were systematically searched to identify original research. No date limit was set, and 23 studies were included. REVIEW METHODS: A five-step approach using the Arksey and O'Malley framework. Thematic analysis guided data analysis. RESULTS: Carers' psychosocial vulnerability occurs when they experience barriers to resources while access and use of supports reduce risk. Antecedents of psychosocial vulnerability include a carer's age and sex, socioeconomic status and their health and wellbeing. Psychosocial vulnerability affects carers' relationships and causes personal losses. CONCLUSIONS: The concept of carers' psychosocial vulnerability is complex. Recognition of carers at risk for psychosocial vulnerability would help nurses direct relevant support and information to carers who need it most.

How Did the COVID-19 Restrictions Impact People Living With Dementia and Their Informal Carers Within Community and Residential Aged Care Settings in Australia? A Qualitative Study.

The aim of this study was to explore how formal social support changed after implementation of the COVID-19 public health measures and how these restrictions affected people living with dementia and their informal carers in Australia. Sixteen informal carers and two people living with dementia were interviewed between August and November 2020. Participants were asked about their experiences of the pandemic and the impact that the restrictions had on their lives and care. Thematic analysis identified four overarching themes describing (a) prepandemic limitations of the aged care system, (b) the aged care system's response to the COVID-19 restrictions, (c) changes affecting informal carers, and (d) the challenges faced by people living with dementia. The findings highlighted the challenges faced by the Australian aged care system before the pandemic and the additional burden placed on informal carers who supported people living with dementia across residential and home settings during the pandemic.