A systematic review of digital access to post-diagnostic health and social care services for dementia.

OBJECTIVES: For many people with dementia and unpaid carers, using technology for care and support has become essential. Rapid proliferation of technology highlights the need to understand digital access to health and social care services for dementia. This mixed-methods systematic review aims to explore digital access to health and social care services for dementia, from the perspective of people with dementia and unpaid carers. METHODS: Nine electronic databases were searched in May 2023 for qualitative, quantitative, or mixed-method studies, published in English or German, focused on experiences of using technology-delivered health and social care services for people with dementia and unpaid carers. After removal of duplicates and screening, 44 empirical papers were included. RESULTS: From the 44 studies, findings were grouped into five categories, highlighting experiences for people with dementia and unpaid carers: (1) Adapting to technology, (2) Inequalities and variations in outcomes, (3) Impact on caring, (4) Impact on health, and (5) Impact on relationships. Proliferation of technology in care access emphasised the need for quick adaptation to technology and examination of its impact. The impact of such service delivery has evidenced mixed findings. There were improvements in the health and wellbeing of people with dementia and unpaid carers, and benefits for their dyadic relationship. However, using technology for health and social care access is not always possible and is often reliant on unpaid carers for support. Lower tech-literacy, lack of equipment or money to buy equipment and poor internet connection can impact the potential for positive outcomes. CONCLUSIONS: Technology can bring great benefits: social inclusion, improved service access and care. However, using technology in service delivery in dementia needs careful thought. Professionals and service providers need to be cognizant of the complex nature of dementia, and the benefits and challenges of hybrid service delivery.

Characteristics of older unpaid carers in England: a study of social patterning from the English Longitudinal Study of Ageing.

BACKGROUND: A growing number of older people provide unpaid care, but contemporary research evidence on this group is limited. AIM: This study aims to describe the characteristics of older people who provide unpaid care and how these vary by socioeconomic position. METHODS: Using recent information from the English Longitudinal Study of Ageing (ELSA wave 9, 2019), we analysed cross-sectional data on 1,282 unpaid carers aged ≥50. Data on sociodemographics, health, social wellbeing, care intensity and caregiver-recipient relationships were extracted. Total net non-pension wealth quintiles were used as a relative measure of socioeconomic position. Differences between the poorest and richest wealth quintiles were examined through logistic regression. FINDINGS: Most older carers in ELSA were female and looking after another older person. Poor mental and physical health and social isolation were common, and socially patterned. Compared with carers in the middle wealth group, the poorest group were more likely to be living with the person they cared for (odds ratio (OR) 1.56 [95% confidence interval (CI) 1.03-2.36]) and more likely to experience loneliness (OR 2.29 [95% CI 1.42-3.69]), dependency (i.e. the need for help with activities of daily living) (OR 1.62 [95% CI 1.05-2.51]), chronic pain (OR 1.81 [95% CI 1.23-2.67]), a higher number of diseases (OR 1.75 [95% CI 1.15-2.65]) and fair/poor self-rated health (OR 2.59 [95% CI 1.79-3.76]). The poorest carers were also less likely to have a high quality of life (OR 0.51 [95% CI 0.33-0.80]) or be in work (OR 0.33 [95% CI 0.19-0.59]). CONCLUSION: Our findings suggest that financially disadvantaged unpaid carers (and their households) may have the greatest needs for intervention and support. Focussing resources on this group has potential to address social inequalities.

Supporting unpaid carers around hospital leave for people detained under the Mental Health Act (1983) in England: carer and practitioner perspectives.

BACKGROUND: When an individual is detained in hospital it is important that they maintain contact with their family, friends and communities as these can be helpful for their well-being and recovery. Maintaining these relationships is also important to unpaid carers (family or friends), but they can be strained by carers' instigation of, or compliance with, the involuntary detention. Section 17 of the Mental Health Act (1983) in England and Wales allows for temporary leave from hospital, from an hour in the hospital grounds to going home for a few days. However, carers are not always involved in decisions around statutory s.17 leave, even where they are expected to support someone at home. This study aimed to explore how practice can be improved to better involve and support carers around s.17 leave. METHODS: Semi-structured interviews and focus groups were held with 14 unpaid carers and 19 mental health practitioners, including four Responsible Clinicians, in three sites in England in 2021. The research explored views on what works well for carers around s.17 leave, what could be improved and the barriers to such improvements. Transcripts were analysed using reflexive thematic analysis. RESULTS: Three themes were identified in the analysis: the need for carer support and the challenges surrounding provision; challenges with communication, planning and feedback around s.17 leave; and inconsistency in involving carers around s.17 leave. Permeating all themes was a lack of resources presenting as under-staffing, high demands on existing staff, and lack of time and capacity to work and communicate with carers. CONCLUSION: Implications include the need for more funding for mental health services for both prevention and treatment; staff training to increase confidence with carers; and standardised guidance for practitioners on working with carers around s.17 leave to help ensure consistency in practice. The study concluded with the production of a 'S.17 Standard', a guidance document based on the research findings consisting of 10 steps for practitioners to follow to support the greater involvement and support of carers.

'It was just - everything was normal': outcomes for people living with dementia, their unpaid carers, and paid carers in a Shared Lives day support service.

OBJECTIVES: Short breaks support the wellbeing of people living with dementia (PLWD) and their unpaid carers. However, little is known about the benefits of community-based short breaks. The objective of this study was to conduct interviews with stakeholders of a Shared Lives (SL) day support service to explore mechanisms and outcomes for the service. The aim of the study was to refine a logic model for a SL day support service for PLWD, their unpaid carers, and paid carers. This logic model shall form the basis for a Social Return on Investment evaluation to identify the social value contributed by the service. METHODS: Thirteen interviews were conducted with service stakeholders including PLWD, unpaid carers and paid carers. Framework analysis assisted in the synthesis of the findings into a logic model. RESULTS: The logic model refined through the interviews, detailed service mechanisms (inputs, activities, outputs) and outcomes. An overarching theme from the interviews concerned the importance of triadic caring relationships, which conferred benefits for those involved in the service. CONCLUSION: SL day support fosters triadic caring relationships, and interview data suggests that these relationships are associated with meaningful outcomes for PLWD, their unpaid carers, and paid carers. We highlight the implications for policy, practice, and future research.

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.

Caring for a person living with dementia: identifying and assessing a carer's needs.

As the population ages and so do the numbers of people with dementia, there will also be an increase in the number of unpaid family carers. Estimates suggest that one in three of us will become a carer for someone with dementia during our lifetime, some caring for more than one person diagnosed with dementia in their family. There are currently over 700 000 people in the UK acting as primary unpaid carers for people with dementia, all of whom make a substantial contribution, both financially and physically, to their care and support. Carers of people with dementia can experience high levels of carer burden and distress as well poor health and wellbeing due to their caring roles. However, they can sometimes be less than visible to health and social care services as they may not identify themselves as carers or their needs may not be easily recognised which leaves them at risk. Identifying people in caring roles and assessing their needs are the first two steps in supporting them. Community nurses are well placed to do this within their roles.

Interventions that support unpaid carers of adult mental health inpatients: a scoping review.

BACKGROUND: Unpaid carers of adult mental health inpatients often lack support for their well-being and feel excluded from decisions about patient care. AIMS: This scoping review aimed to: synthesise the peer-reviewed literature evaluating the outcomes of brief interventions for unpaid carers of adult mental health inpatients, identify transferable lessons for evidenced-informed practice, and establish future research priorities. METHODS: PRISMA scoping review guidelines were followed to search 12 databases using predefined search terms. Two reviewers independently screened papers and applied exclusion/inclusion criteria. Studies were included if they evaluated the impact or outcomes of interventions. Two reviewers extracted data and assessed study quality. Data were synthesised to categorise types of interventions and evidence for their outcomes. RESULTS: 16 papers met the inclusion criteria, and five types of interventions were identified: those that aimed to (1) increase carer involvement in inpatient care; (2) facilitate organisational change to increase carer support and involvement; (3) provide carers with support; (4) deliver psychoeducation and offer support; and (5) reduce carer stress and improve coping skills. CONCLUSIONS: Whilst evidence of intervention effectiveness was promising, the quality of studies was generally weak. More research is needed to develop an evidence-informed approach to supporting carers during inpatient stays.

The experiences of working carers of older people regarding access to a web-based family care support network offered by a municipality.

Policy makers in Sweden and other European Member States pay increasing attention as to how best support working carers; carers juggling providing unpaid family care for older family members while performing paid work. Exploring perceived benefits and challenges with web-based information and communication technologies as a means of supporting working carers' in their caregiving role, this paper draws on findings from a qualitative study. The study aimed to describe working carers' experiences of having access to the web-based family care support network 'A good place' (AGP) provided by the municipality to support those caring for an older family member. Content analysis of interviews with nine working carers revealed three themes: A support hub, connections to peers, personnel and knowledge; Experiencing ICT support as relevant in changing life circumstances; and Upholding one's personal firewall. Findings indicate that the web-based family care support network AGP is an accessible, complementary means of support. Utilising support while balancing caregiving, work obligations and responsibilities was made easier with access to AGP; enabling working carers to access information, psychosocial support and learning opportunities. In particular, it provided channels for carers to share experiences with others, to be informed, and to gain insights into medical and care issues. This reinforced working carers' sense of competence, helping them meet caregiving demands and see positive aspects in their situation. Carers' low levels of digital skills and anxieties about using computer-based support were barriers to utilising web-based support and could lead to deprioritising of this support. However, to help carers overcome these barriers and to better match web-based support to working carers' preferences and situations, web-based support must be introduced in a timely manner and must more accurately meet each working carer's unique caregiving needs.

Voices of unpaid carers: problems and prospects in accessing palliative care and self-care information, resources and services.

Background: Unpaid carers make a substantial contribution to the health economy and carers of palliative patients are particularly vulnerable due to special patient needs and excessive carer burden. The Australian Government recently implemented the Integrated Carer Support Service Model to provide a range of free services to carers in the community. However, it is unclear whether such initiatives are effective and, more importantly, how carers of palliative patients gain access to information, support and services for the patient and themselves. Objectives: We sought to investigate unpaid carers' experiences in accessing information and resources for support with patient care with a specific focus on palliative care resources and to determine carers' access to information and support for self-care. We also aimed to identify what opportunities and challenges remain for these particular carers according to their experiences. Methods: We conducted 18 semi-structured interviews and 3 focus groups with unpaid family or friend carers of palliative patients in South Australia from metropolitan, regional and rural communities. Grounded in a descriptive phenomenological paradigm, we conducted a hybrid approach to thematic analysis combining deductive and inductive coding following Fereday and Muir-Cochrane's method. Results: The government's web-based initiative provided little impact in supporting carers from our cohort. There remains a substantial gap between the formal recognition of the importance of carers and their lived reality. This recognition by health professionals is vital, as carer self-identification is not common and affects help-seeking behaviour. Carers seek and respond to more grassroots, personalized forms of support and sharing of information. Conclusion: The lack of self-identification affects carers' help-seeking behaviours. Carer identification and recognition need to be initiated by health professionals in a proactive manner to ensure carers are prepared for their role and are emotionally supported to sustain it. Carers seek face-to-face guidance and sources of information.

Rapid review: Ten ways to improve support for minoritised informal adult carers at local government policy level to redress inequality.

Objective: To rapidly identify and summarise evidence on key factors that affect access to support for minoritised informal adult carers which could be addressed at the level of local government policy-making. Study design: Rapid evidence review. Methods: A rapid umbrella review was undertaken of systematic reviews of qualitative, quantitative and/or mixed method studies. Systematic reviews were identified through database searches (Medline, Cochrane, Proquest), key author searching, referrals by experts (n = 2) of key reviews, and citation and reference checking of identified reviews in September-October 2023. Systematic review evidence was supplemented with grey literature identified by practitioners (n = 2) as locally-relevant. Data was extracted directly into a table and findings synthesised narratively by theme. Results: Many factors were identified as affecting access to support for minoritised unpaid adult carers, including: inattention to socio-cultural diversity; issues of representation, racism and discrimination; and socio-economic inequality. Factors were themed around ten areas for local action, including: the importance of recognising intersectional disadvantage and diversity; ensuring support is socio-culturally appropriate; paying attention to gendered hierarchies in service design; identifying and 'designing out' racism and discrimination; addressing exclusions that minoritised carers with additional communication needs face; mitigating socio-economic inequality; and taking a 'whole system' approach that improves integration, routine data collection and support service evaluation. Conclusions: We identified ten potential ways in which inequalities in support for minoritised unpaid adult carers could be addressed locally. Although the existing evidence base is limited, these ten areas could usefully be targeted for further investigation in research and within local policy development.

Unpaid carers of people with dementia and information communication technology: Use, impact and ideas for the future.

OBJECTIVES: Several 100,000s of people living with dementia in the UK are cared for at home by a spouse or relative. Few studies have considered the ICT needs and experiences of unpaid carers. This study explores the types of ICT unpaid carers use, the ways they use ICT, the impact of ICT-use, and their ideas for how ICT could be more supportive of their role as a carer. METHODS: Six focus groups with 32 unpaid carers of people living with dementia discussed their experiences of - and barriers to - using ICT. Transcripts were analysed thematically according to three types of ICT (mainstream, accessible and formal) and five functions (supporting domestic tasks, care management, monitoring, communication and information and education). RESULTS: Participants predominantly used mainstream ICT devices such as laptops and smartphones and internet-enabled applications including videoconferencing and social media platforms to support their daily activities and assist them in their caring role. A few participants discussed using accessible devices such as memory clocks and formal telecare and care-phone services for care management and monitoring functions. Participants' ideas for improvements centred on personalised communication applications that facilitate remote interactions and promote persons living with dementia's independence. Others expressed concerns about the growing need to use ICT to access formal care services and the inadequacy of the ICT infrastructure in some care homes. CONCLUSIONS: Unpaid carers mostly turn to readily available mainstream ICT to support their personal and care activities. Further research is required to understand the social impact of the increasing reliance of ICT across health, social and residential care service sectors. Improved cooperation between unpaid carers, technology developers and care services providers could align ICT development to the needs and experiences of families living with dementia and assist unpaid carers with identifying ICTs that optimally support their personal circumstances.

Stress and well-being of unpaid carers supporting claimants through disability benefit assessments.

This study assessed the subjective well-being and perceived stress of unpaid carers of disability benefit claimants. A total of 129 carers from the UK were surveyed between July and September 2017, using a cross-sectional design. Carers, who provided unpaid support to sick or disabled friends, family or neighbours in a non-professional capacity, reported here as unpaid carers, were asked to complete a web-based questionnaire comprising of the Perceived Stress-10-item Scale (PSS-10), the Personal Wellbeing Index-Adult (PWI-A), sociodemographic characteristics, the time they spent caring per day and the number of Personal Independence Payment and Work Capability Assessment interviews prepared for and attended by the person they cared for. Hierarchical regression analyses were performed to assess the effects of the number of benefit assessments on stress and well-being scores, controlling for carers' sociodemographic characteristics and the time they spent caring. Analyses revealed that the number of times that claimants were exposed to benefit assessments significantly and negatively predicted unpaid carers' well-being and was positively related to their stress levels. After controlling for sociodemographic characteristics and hours supporting per day, benefit assessments predicted 8.1% of perceived stress and 4.3% of well-being variance. Being a female unpaid carer of a disability benefit claimant negatively predicted 7.5% of well-being variance. The results offered unique evidence of the negative psychological effects of disability benefit assessments upon unpaid carers, while adding to the evidence of female carers facing increased risks of psychological distress.

Telling a 'good or white lie': The views of people living with dementia and their carers.

OBJECTIVE: A common symptom of cognitive decline in people living with dementia, or people with memory problems, the cause of which has not yet been diagnosed, is the person repeatedly asking for loved ones who are deceased or making statements that are incorrect. Carers are then faced with a dilemma, do they avoid and distract or 'correct' the person and tell the 'truth', or tell a lie. This paper explores the concept of lying from the perspective of people living with dementia in the community and their informal/unpaid carers. METHODS: A descriptive qualitative study utilising focus groups to collect the data was conducted. Three focus group's with a purposive sample of people with memory problems (n = 14) and three focus group's with informal/unpaid carers (n = 18) were undertaken. Qualitative content analysis was used to analyse the data. RESULTS: All participants considered that blatant lying with the intention to deceive and do harm is not acceptable. However, telling a 'good lie' or 'white lie' to alleviate distress was in certain circumstances considered acceptable. The intention behind the 'lie' in their view had to be to do good, and the informal/unpaid carer telling the lie had to really 'know the person' and be cognisant of family preferences. Some informal/unpaid carers acknowledged that it may be acceptable for health care professionals to tell a 'good lie' or 'small lie' in certain circumstances. However, health professionals need to 'know the person' and need to consider informal/family caregivers' wishes. CONCLUSION: Lying was only considered acceptable in the context of knowing the person and when done with the intention not to harm or deceive, undertaken with empathy, and only for the purpose of mitigating the person living with dementia's distress.