Re-thinking care after the pandemic: a European Care Strategy for Caregivers and Care Receivers

The importance of care for our sustainability is increasingly discussed by policy makers and academics. For several reasons, however, the law has failed to address it. Accordingly, care has long been in a state of crisis, where the needs of those who require care are not met, and those who care are routinely subject to discrimination and cannot care in a dignified way. The Covid-19 Pandemic has highlighted the extent of the problem. The EU has responded by announcing on 7 September 2022 ‘A European Care Strategy for Caregivers and Care Receivers'. Although not flawless, this initiative is ground-breaking. It is now crucial to sustain momentum and to continue to build on this initiative. © 2023, The Author(s).

Online Singing Groups for People With Dementia: Adaptation and Resilience in the Face of the COVID-19 Pandemic.

INTRODUCTION: At the start of the COVID-19 pandemic, people with dementia living in the community experienced the sudden loss of their usual activities, and videoconferencing was widely adopted by music groups whilst face-to-face sessions were not possible. This paper reports the findings of a proof-of-concept study of online singing for people living with dementia and their carers, focusing on the experiences of the participants. METHOD: People with dementia and their care partners were invited to take part in 10 weeks of online singing sessions. Each session lasted 1 hour, and comprised time for talking, warming up and singing familiar songs. Participants completed standardised outcome measures at baseline and after 10 weeks. Dyads were invited to take part in a semi-structured interview. RESULTS: In total, 16 pairs were recruited. The response to the online singing group was mostly positive. Participants were able to use the technology to join the sessions, and reported few technical problems. Despite the limitations of online singing, the experience was frequently reported to be enjoyable. Some participants described longer-term benefits, such as improved mood and better relationship between care partners. Some felt online sessions had advantages over face-to-face ones; for example, they were more accessible. However, participants who had previously been attending face-to-face sessions felt that the online singing was a "better than nothing" substitute. CONCLUSIONS: Online singing cannot recreate the experience of group singing face-to-face, and it requires some technical knowledge, but it provides a worthwhile alternative in a time of need for some people with dementia and their carers. Furthermore, for some people online singing may be preferable due to its accessibility. Given the potential for online singing to include people who cannot go out for any reason and its relatively low cost, providers may wish to consider hybrid online/in-person singing groups in future.

Versorgung pflegender Angehöriger von Menschen mit Demenz in der Kommune während der Pandemie.

Care for family carers of people with dementia in municipal communities during the pandemic: A Qualitative Study Abstract. Background: The availability of support services for family carers of persons with dementia in the municipal community shows deficits due to the Corona pandemic and thus entails a change in the support of carers. Research question: The questions arise, what changes in the care of family carers of people with dementia do those affected perceive, how do actors from the municipal community experience the care situation during the pandemic and to what extent do the perceptions of the groups coincide or differ. Method: The database consists of town hall talks and focus groups from 13 municipal communities in Germany. Participants were family carers and actors from the municipal community. For data analysis, a qualitative content analysis was carried out. Result: Negative changes in the care of caregivers can be seen, for example, in the omission of care services or groups of relatives. Above all, actors perceived positive changes, such as advancing digitalization or increased neighborly help. The perception of changes in the care situation differs in several subcategories between carers and actors. Conclusion: Although large gaps in care have been created by the pandemic, emerging challenges also create new ways for support such as digital groups for family carers. In the future, opportunities need to be created to implement already developed interventions in such a way that the target group can make use of them.

Internet-based interventions for family carers of people with dementia

There is an urgent global need for accessible, usable, effective and scalable skills training and support programs for carers of people with dementia, particularly in LMICs. WHO's iSupport is filling this gap by providing such a program, accessible for translation and cultural adaptation worldwide. First steps have been undertaken to support the systematic and culturally fair translation and adaptation of the program in several countries. However, while web-based or online programs for dementia carers such as iSupport seem to be promising, the scaling of these programs remains challenging and is a common issue for digital health solutions. In fact, the findings of a first efficacy study from India highlight the need to understand carers' individual situation better and tailor support programs even more to their specific needs. Going forward, iSupport could be improved by adding a mobile phone application to offer more flexibility to users, including an interactive or moderated chat function or more audio-visual materials to the online program to increase its appeal. To assist carers who wish to use more traditional ways of learning, WHO has released the iSupport hardcopy manual, which presents the entire iSupport content in book format. Further robust cultural adaptations and high-quality research investigating the effectiveness of iSupport across different settings and for different groups of carers are required. Finally, in the context of the ongoing COVID-19 pandemic, digital support services such as iSupport are more important than ever and present a real opportunity to build back better, which will help to reach the global target set by WHO that 75% of countries will provide support and training programs for carers and families of people with dementia by 2025. (PsycInfo Database Record (c) 2023 APA, all rights reserved)

Caring from a distance: carers? experiences of keeping in touch with care home residents during COVID-19 closures

In response to COVID-19, many care homes closed to visitors and new ways for carers and residents to stay in touch were tried. This UK study employed an online survey to explore carer experiences of staying in touch from a distance. The research highlighted: the importance of ongoing connections (through visits and remotely);diverse approaches to maintaining contact;and concerns about safeguarding and well-being. Findings underscore the importance of developing personalised approaches to staying in touch during future care home closures and for those who require an ongoing approach to remote contact due to distance, illness or additional caring responsibilities.

Through a glass, darkly: Gazing into the field of carers in academia

Carers in academia is a young but growing field, which has quickly expanded since the 2000s and has gained new momentum during the Covid‐19 pandemic and the accompanying disruptions of personal and professional lives. It is also one which, through its associations with reproductive and women's work, remains relatively marginalised. This article examines the English language research literature on carers in academia. Drawing upon feminist poststructuralist theories, we contend that, because the literature is not ‘out of the discourses' of care and academic work and, instead, contributes to construct the objects it speaks of, the state of the field is a matter of cognitive and social justice. Following the presentation of the methodological and theoretical frameworks and a discussion of the authorial voices framing the field, we consider the relative in/visibilities of various groups of care/rs. Drawing on a review which identified 158 relevant texts, we find research in the field broadly ignores male, disabled, BME and LGBTQ+ carers, as well as ancillary workers and professional groups other than academics, and forms of care work other than parenting healthy, abled children. We then move to discussing the liminalities of care, noting the absence of studies of care work in academia related to non‐humans and to end of life. We conclude by pointing out the need for further reflexivity in terms of how processes of knowledge production include and exclude in ways that are complex and fluid.

Parental home-based pulse oximetry monitoring for adults with intellectual disabilities at risk of serious respiratory problems including COVID-19: a brief report.

BACKGROUND: People with intellectual disabilities (ID) are at high risk of developing respiratory health issues. The COVID-19 pandemic has compounded this, with serious consequences, and for some, death. Despite home-based oxygen saturation monitoring being recommended for people with ID, there is a stark lack of evidence in the literature on its feasibility. METHOD: We conducted 3-day baseline home-based oxygen saturation monitoring, using pulse oximeters, with eight parents of nine adults with ID in Scotland. Two eligible parents also completed a further 2 weeks of monitoring, and returned an evaluation questionnaire on its feasibility. RESULTS: Baseline mean readings for eight adults with ID were within the normal range (%Sp02  ≥ 95), and for another one 94%. Fluctuations over the 3-day assessment period were experienced by six of these individuals. However, these variations were within limits which are not dangerous (lowest reading 92%), implying that parental home-based pulse oximetry monitoring is likely to be safe for adults with ID. The two parents who completed the evaluation found home-based pulse oximetry monitoring to be easy/very easy to do, and effective/very effective. CONCLUSIONS: This is the first research study, albeit with a very small sample, to report on the potential feasibility of parental home-based pulse oximetry monitoring for adults with ID. Home-based pulse oximetry monitoring appears to be safe in adults with ID at risk of developing serious respiratory problems, and not difficult for their parents to do. There is an urgent need to replicate this work, using a larger sample, to promote home-based respiratory health monitoring more widely for people with ID.

Evaluation of a brief carer support intervention

There is international evidence that informal or unpaid carers have poorer mental health and experience higher levels of isolation and stress than others in the population. Identifying approaches that promote carer well-being is critical to supporting this essential role in the community. This study presents the findings of the evaluation of a brief carer intervention designed to improve carers' well-being delivered by a community service organisation. The manualised programme provided information and psycho-education to adult carers in five regional locations in Victoria, Australia. Positive change was noted in carers' knowledge of good mental health and well-being, supports, and social connectedness.

Tracking the mental health of home-carers during the first COVID-19 national lockdown: evidence from a nationally representative UK survey.

BACKGROUND: Unpaid carers who look after another member of their household (home-carers) have poorer mental health than the general population. The first COVID-19 national lockdown led to an increasing reliance on home-carers and we investigate the short- and longer-term impacts of lockdown on their mental health. METHODS: Data from 9737 adult participants (aged 16+) from the UK Household Longitudinal Study (Understanding Society) were used to explore changes in 12-item General Health Questionnaire (GHQ-12) score between (a) pre-pandemic (2019) and early lockdowns (April 2020) and (b) early and later (July 2020) lockdowns. RESULTS: GHQ-12 scores among home-carers were higher pre-lockdown and increased more than for non-carers from 2019 to April 2020 with further increases for home-carers compared with non-carers between April and July. Compared with respondents caring for a spouse/partner, those caring for a child under 18 had a particularly marked increase in GHQ-12 score between 2019 and April, as did those caring for someone with a learning disability. Home-carers of children under 18 improved from April to July while those caring for adult children saw a marked worsening of their mental health. Home-carers with greater care burden saw larger increases in GHQ-12 score from 2019 to April and from April to July, and increases through both periods were greater for home-carers who had formal help prior to lockdown but then lost it. CONCLUSIONS: The mental health of home-carers deteriorated more during lockdown than non-carers. Policies that reinstate support for them and their care-recipients will benefit the health of both vulnerable groups.

A peer interview qualitative study exploring support for carers of people with comorbid autism and eating disorders.

BACKGROUND: Carers of people with eating disorders (EDs) are known to experience a lack of support, high levels of unmet needs and resulting distress. Specific support and interventions for carers may benefit both the carer, and their loved one with an ED. Individuals with co-occurring autism and EDs may present with additional needs and difficulties relating to their Autism Spectrum Condition (ASC) that impact their carers. However, there is a lack of research exploring whether carers of people with ASC and EDs have specific support needs, and what kinds of support may be most beneficial for this population. METHODS: This study used a qualitative interview design, utilising peer interviews. Eleven carers participated in interviews about their experiences as a carer, and their views on existing support systems and potential improvements. As the study took place during the initial UK coronavirus lockdown, the impact of the lockdown also emerged as a topic during the interviews. Interviews were transcribed and analysed using thematic analysis. RESULTS: Five themes were identified: challenges associated with co-occurring Autism and EDs, a lack of existing support for carers from healthcare services, the personal impact of caring for someone with both ASC and EDs, ideas for how carers can be best supported, and the impact of the coronavirus on carers. CONCLUSIONS: Carers of loved ones with both ASC and EDs described the experience as having a significant personal impact on their lives, but also experienced a lack of support from healthcare services. There was a perception that caring for someone with both an ASC and EDs presents additional challenges compared to caring for someone with an ED only, and that this population therefore requires specialised support. Recommendations for possible support options, and for further research, are outlined.

'No more heroes': The ILC Oxford Statement on fundamental care in times of crises.

AIM: To outline the International Learning Collaborative (ILC) Oxford Statement, explicating our commitment to ensuring health and care systems are equipped to meet patients' fundamental care needs during times of unprecedented crisis. DESIGN/METHOD: Discussion paper. The content was developed via a co-design process with participants during the ILC's international conference. KEY ARGUMENTS: We, the ILC, outline what we do and do not want to see within our health and care systems when faced with the challenges of caring for patients during global pandemics and other crises. Specifically, we want fundamental care delivery to be seen as the minimum standard rather than the exception across our health and care systems. We want nursing leaders to call out and stand up for the importance of building fundamental care into systems, processes and funding priorities. We do not want to see the voices of nursing leaders quashed or minimized in favour of other agendas. In turn, what we want to see is greater recognition of fundamental care work and greater respect for the people who do it. We expect nurses to have a 'seat at the table' where the key health and care decisions that impact patients and staff are made. CONCLUSION: To achieve our goals we must (1) ensure that fundamental care is embedded in all health and care systems, at all levels; (2) build on and strengthen the leadership skills of the nursing workforce by clearly advocating for person-centred fundamental care; (3) co-design systems that care for and support our staff's well-being and which foster collective resilience rather than overly rely on individual resilience; (4) improve the science and methodologies around reporting and measuring fundamental care to show the positive impact of this care delivery and (5) leverage the COVID pandemic crisis as an opportunity for transformational change in fundamental care delivery.

Using a six-step co-design model to rapidly respond to cancer carers support and information needs during a global pandemic.

OBJECTIVES: The COVID-19 pandemic placed severe strain on cancer carers resulting in an urgent need for information and support. METHODS: The Santin 2019 6-step co-design model was used to rapidly modify an existing online cancer carers resource. Draft content of a COVID-19 module was created via two workshops and six meetings with an expert advisory team (Step 1). This content was then produced into videoed testimonials (Step 2). A module prototype was reviewed by volunteers (Step 3) and modified based on feedback (Step 4). User-testing occurred via two online feedback sessions (Step 5) and modifications were made (Step 6). All steps were audio recorded, transcribed verbatim and analysed thematically. RESULTS: A COVID-19 support, and information module was rapidly co-designed by n = 45 stakeholders (n = 11 workshop 1 and 2 (3 carers/14 professionals), n = 6 advisory committee (1 carer/5 professionals), n = 4 video content (1 carer/3 professionals) and n = 24 feedback sessions (5 carers/19 professionals). The module contained vaccination information, infection control and how to manage the psychosocial impact of restrictions. Information was delivered in 4 short videos with links to up-to-date guidance and information services. Participants identified that the module included all key information for carers in an accessible and informative way. The use of videos was viewed as an emotive and reassuring. CONCLUSIONS: During a global pandemic, cancer carers urgently required tailored information. Co-designed online resources allow service providers to rapidly respond to emerging and unprecedented issues and provide urgent information and support.

Family carer and professional perceptions of the potential use of telehealth for behavioural support.

BACKGROUND: Telehealth (i.e. the use of technology across distance) is widespread in many fields. Although its use for behavioural support for people with intellectual or developmental disabilities (IDD) is emerging, there are no known studies examining stakeholder perceptions of this. METHODS: A four-round Delphi consultation was conducted with 11 professionals and six family carers of children with IDD to generate consensus on what would influence participants' use of telehealth for behavioural support. Data were collected prior to the coronavirus pandemic. RESULTS: Thirty-six items reached consensus for professionals (26 advantages and 10 disadvantages/barriers) and 22 for family carers (8 advantages and 14 disadvantages/barriers). A range of solutions were also identified for the disadvantages/barriers. CONCLUSIONS: Participants were willing to use telehealth for behavioural support. However, disadvantages/barriers need to be addressed, and guidelines relating to the use of telehealth in this field are needed. We report a number of practice recommendations including combining telehealth with in-person supports where possible, incorporating video technologies, and considering client perspectives and confidence with telehealth methodologies.

Does It Matter Who You Provide Care for? Mental Health and Life Satisfaction in Young Adult Carers Associated with Type of Relationship and Illness Category-A National Student Survey.

There is limited knowledge on how caring contexts impact young adults providing informal care for persons with chronic conditions. This study examines associations between outcomes in young adult carers (YACs) and type of relationship (e.g., close or distant family member, partner, or someone outside the family) and type of illness in the care-receiver (e.g., mental, physical illness/disability, or substance abuse). A total of 37,731 students (age 18-25, mean 22.3 years, 68% females) in higher education in Norway completed a national survey on care responsibilities, hours of daily caring, relationship and type of illness, mental health problems (Hopkins Symptoms Checklist-25) and life satisfaction (Satisfaction With Life Scale). More mental health problems and lower life satisfaction were found among YACs compared to students without care responsibilities. The poorest outcomes were reported by YACs caring for a partner, followed by YACs caring for a close relative. Hours spent on daily caring was highest when caring for a partner. Poorer outcomes were reported by YACs caring for someone affected by substance abuse, followed by mental health problems and physical illness/disability. At-risk groups among YACs should be acknowledged and offered support. Future studies are needed to investigate the potential mechanism for the associations between care context variables and YAC outcomes.

Recruitment of Adolescent Young Carers to a Psychosocial Support Intervention Study in Six European Countries: Lessons Learned from the ME-WE Project.

Young carers provide a substantial amount of care to family members and support to friends, yet their situation has not been actively addressed in research and policy in many European countries or indeed globally. Awareness of their situation by professionals and among children and young carers themselves remains low overall. Thus, young carers remain a largely hidden group within society. This study reports and analyses the recruitment process in a multi-centre intervention study offering psychosocial support to adolescent young carers (AYCs) aged 15-17 years. A cluster-randomised controlled trial was designed, with recruitment taking place in Italy, the Netherlands, Slovenia, Sweden, Switzerland and the United Kingdom exploiting various channels, including partnerships with schools, health and social services and carers organisations. In total, 478 AYCs were recruited and, after screening failures, withdrawals and initial dropouts, 217 were enrolled and started the intervention. Challenges encountered in reaching, recruiting and retaining AYCs included low levels of awareness among AYCs, a low willingness to participate in study activities, uncertainty about the prevalence of AYCs, a limited school capacity to support the recruitment; COVID-19 spreading in 2020-2021 and related restrictions. Based on this experience, recommendations are put forward for how to better engage AYCs in research.

Co-design development of a decision guide on eating and drinking for people with severe dementia during acute hospital admissions.

INTRODUCTION: Using co-design processes, we aimed to develop an evidence-based decision guide for family carers and hospital professionals to support decision-making about eating and drinking for hospital patients with severe dementia. METHODS: Following a systematic review, we interviewed people with mild dementia, family carers and hospital professionals in England. We then held co-design workshops with family carers and hospital professionals. In parallel with the workshops, we used a matrix to synthesize data from all studies and to develop a decision guide prototype. The prototype was iteratively refined through further co-design workshops and discussions among researchers and Patient and Public Involvement (PPI) representatives. We conducted user testing for final feedback and to finalize the decision guide. RESULTS: Most participants acknowledged the limited benefits of tube feeding and would not use or want it for someone with severe dementia. However, they found decision-making processes and communication about nutrition and hydration were emotionally demanding and poorly supported in acute hospitals. The co-design groups developed the aims of the decision guide to support conversations and shared decision-making processes in acute hospitals, and help people reach evidence-based decisions. It was designed to clarify decision-making stages, provide information and elicit the values/preferences of everyone involved. It encouraged person-centred care, best-interests decision-making and multidisciplinary team working. From user testing, family carers and hospital professionals thought the decision guide could help initiate conversations and inform decisions. The final decision guide was disseminated and is being used in clinical practice in England. CONCLUSION: We used rigorous and transparent processes to co-design the decision guide with everyone involved. The decision guide may facilitate conversations about nutrition and hydration and help people reach shared decisions that meet the needs and preferences of people with severe dementia. Future evaluation is required to test its real-world impacts. PATIENT OR PUBLIC CONTRIBUTION: People with mild dementia, family carers and hospital professionals contributed to the design of the decision guide through the interviews and co-design workshops. PPI members helped design study procedures and materials and prepare this manuscript.

Idosellátás és a családi gondozók terhelése a COVID-19-járvány elso hulláma idején.

INTRODUCTION: COVID-19 pandemic has reduced the capacity of health and social care systems. The limited availability of care systems and the specific challenges of the pandemic have increased the burden and stress on family caregivers. OBJECTIVE: This paper focuses on the burden of family caregivers in the light of their experiences with health and social services. METHODS: Online questionnaire survey (n = 1004; active caregivers during COVID-19 pandemic: n = 491); data were analyzed using quantitative and qualitative (content analysis) methods. RESULTS: More than half of the active caregivers experienced an increasing burden in caregiving after the release of COVID-19. Associations are between the increase in caregiving burden during COVID-19 and the municipality type of caregiver's home, the cared for's dementia involvement, the use of home help or other care assistance, and employment. In addition, those who reported an increased burden due to the pandemic also perceived the caregiving role as more stressful. The most significant additional burden was the increased mental and psychological strain caused by restrictions, difficulties in providing care, and the pandemic. DISCUSSION: Our results suggest that the increase in caregiving burden during COVID-19 can be explained by the specific challenges of the pandemic. CONCLUSION: Family caregivers are particularly vulnerable and need special emergency services in such situations. The significantly increased mental strain in emergency situations draws attention to the need for mental health care for carers. Orv Hetil. 2022; 163(42): 1654-1662.

The early impacts of COVID-19 on unpaid carers of people living with dementia: part II of a mixed-methods systematic review.

OBJECTIVES: With a lack of existing comprehensive reviews, the aim of this mixed-method systematic review was to synthesise the evidence on the early impacts of the pandemic on unpaid dementia carers across the globe. METHODS: This review was registered on PROSPERO [CDR42021248050]. PubMed, CINAHL, Embase, Scopus and Web of Science were searched from 2020 to July 2021. Studies were included if they reported on the different impacts of the pandemic on unpaid dementia carers aged 18+, with papers published in English, German, Polish, or Spanish. A number of research team members were involved in the selection of studies following PRISMA guidance. RESULTS: Thirty-six studies (43 papers) from 18 countries reported on the early impact of the pandemic on unpaid dementia carers. Impacts were noted on accessing care and support; carer burden; and well-being. Studies found that carers had limited access to care and support services, increased workload, enhanced feelings of social isolation, and reduced wellbeing. Specifically, reductions in access to care and support increased carer's unpaid caring tasks, removing any opportunities for temporary respite, and thus further increasing carer burden and reducing mental well-being in many. CONCLUSIONS: The needs of unpaid dementia carers appear to have increased during the pandemic, without adequate support provided. Policy initiatives need to enable better mental health support and formal care provision for unpaid carers and their relatives with dementia, whilst future research needs to explore the long-term implications of carer needs in light of care home restrictions and care delivery.