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.

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.

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.

Mental Health Family Carer Experiences during COVID-19: A Rapid Scoping Review of the International Literature

Internationally, people experiencing mental health challenges and psychosocial distress faced service disruptions, increased uncertainties and isolation, during the COVID-19 pandemic. Mental health family carers in turn experienced high levels of demand to fill gaps in service responses within a context of fear and uncertainty. A scoping narrative review methodology was undertaken to account for the varying methodologies of studies and the recency of the COVID-19 pandemic. Six databases were searched: Proquest, Ovid, Psych Info, CINAHL, Scopus, WHO COVID-19 database in January 2022. A total of 147 articles were identified, with 19 included in the final review. Findings revealed few studies focused on the experiences of mental health family carers during the pandemic. Studies that elevated mental health family voices identified they were more likely to provide emotional support than other carers, and less likely to receive government income support. Higher distress was present in family carers who lived with people with low independence, supported more than one person and provided higher levels of care. Family carers experienced concerns about-family members becoming infected during hospitalisations, accessing services, inappropriate and early discharges, care provision if family carers became unwell and the need for targeted responses and quality for online services.

A UK qualitative study of living and dying with dementia in the last year of life.

Background: Dementia is a life-limiting illness, but the trajectory of dying can be difficult to establish and care at end of life can be variable and problematic. Methods: This UK study was carried out to explore the end-of-life-care experiences of people with dementia from the perspective of their family carers. In-depth interviews were conducted with 40 bereaved family carers of people with dementia. Results: Forty family carers (male n = 9, female n = 31) age range: 18-86 years were interviewed. Issues with poor communication were common. The hard work of caring and issues regarding unpredictability of living and dying with dementia were also commonplace within the study. Only three patients were referred for specialist palliative care support at the end of life, all of whom had a dual diagnosis of dementia and cancer. Conclusion: This qualitative study has identified that there are several gaps in the end-of-life care of people with dementia, and frequently, there is poor communication during the last year of life. The need for high-quality integrated care for people dying with dementia with appropriate support during the last year of life is identified. COVID-19 has disproportionately affected people with dementia, and in the post-pandemic era, there is an urgent need to ensure every person dying with dementia is supported to die in their preferred place and that family members are supported and enabled to be treated as the 'expert' in terms of their knowledge of their relatives' care and preferences.

'I cannot be missed yet': A qualitative study of carers of family members with an intellectual disability about long-term care planning during the COVID-19 pandemic.

BACKGROUND: Family carers of people with an intellectual disability sometimes need to transfer their caregiving tasks for example because of illness or ageing. We examined carers' experiences with long-term care planning and the impact of the COVID-19 pandemic on their intentions to engage in long-term planning in the Netherlands. METHOD: Twenty-five semi-structured interviews with family carers of people with an intellectual disability were conducted and 169 answers to an open question were thematically analysed. Data collection took place at three timepoints during 2020 and 2021. RESULTS: Family carers were recurrently concerned with long-term care planning, especially with finding people to whom they can entrust their tasks. However, they perceived barriers in care planning. The COVID-19 pandemic reinforced awareness of long-term care planning and moved some to action. CONCLUSIONS: The perceived urge to plan by family carers has grown due to the COVID-19 pandemic. The current study provides valuable insights for stakeholders to support them in this.

[Consequences of the COVID-19 measures for wellbeing aspects of long-term care residents]. / De gevolgen van de COVID-19 maatregelen voor het welbevinden van bewoners van instellingen voor langdurige zorg.

To examine the impact of COVID-19 measures on residents of long-term care institutions, two surveys were conducted in the spring of 2020. Leontjevas et al. (study 1) inventoried practitioners' opinions, Van der Roest et al. (study 2) opinions of care workers, family, and residents without severe cognitive impairments. This article describes the combined results on social interaction and loneliness, challenging behaviour and mood, and lessons learned. In study 1, an online survey distributed to nursing home psychologists, they were asked to complete it anonymously and share the link with their fellow elderly care physicians and nurse specialists. 16 participants were then interviewed via video calling. In study 2, three hundred and fifty-seven care organizations were invited to recruit residents without severe cognitive impairments, family members and care workers for participating in a digital, anonymous survey (Study 2). The completed surveys of 323 practitioners (study 1) and 193 residents, 1609 family members and 811 employees (study 2) were included in the analyses. Social contacts of residents had changed in frequency and form compared to before the COVID-measures. Many residents experienced some loneliness during the visit ban, especially residents without cognitive impairments. There were both an increase and a decrease in challenging behaviour and affect. Several strategies used to reduce the effects of COVID-19 measures on well-being, were considered maintainable. Our studies confirmed a major impact of the COVID-19 measures on the wellbeing of long-term care residents, but also showed successful strategies of practitioners that can benefit future practice.

Coproducing a library of videos to support families caring for children with gastrostomies: A mixed-methods evaluation with family carers and clinicians.

INTRODUCTION: Many families now perform specialist medical procedures at home. Families need appropriate training and support to do this. The aim of this study was to evaluate a library of videos, coproduced with parents and healthcare professionals, to support and educate families caring for a child with a gastrostomy. METHODS: A mixed-methods online survey evaluating the videos was completed by 43 family carers who care for children with gastrostomies and 33 healthcare professionals (community-based nurses [n = 16], paediatricians [n = 6], dieticians [n = 6], hospital-based nurses [n = 4], paediatric surgeon [n = 1]) from the United Kingdom. Participants watched a sample of videos, rated statements on the videos and reflected on how the videos could be best used in practice. RESULTS: Both family carers and healthcare professionals perceived the video library as a valuable resource for parents and strongly supported the use of videos in practice. All healthcare professionals and 98% (n = 42) of family carers agreed they would recommend the videos to other families. Family carers found the videos empowering and easy to follow and valued the mixture of healthcare professionals and families featured in the videos. Participants gave clear recommendations for how different video topics should fit within the existing patient pathway. DISCUSSION: Families and healthcare professionals perceived the videos to be an extremely useful resource for parents, supporting them practically and emotionally. Similar coproduced educational materials are needed to support families who perform other medical procedures at home. PATIENT OR PUBLIC CONTRIBUTION: Two parent representatives attended the research meetings from conception of the project and were involved in the design, conduct and dissemination of the surveys. The videos themselves were coproduced with several different families.

The Impact of COVID-19 on the Health and Experience of the Carers of Older Family Members Living with Dementia: An Italian-Hungarian Comparative Study.

This quantitative study (n = 370) compares the pandemic-related experiences of the family carers of older people living with dementia during the first wave of the pandemic, in two countries with different care regimes: Italy (Mediterranean) and Hungary (Eastern European). It aims at answering the following research questions: (1) How did the pandemic affect the subjective health of carers, and what were their experiences with care-related worries and workload? (2) What factors significantly predicted negative changes in these experiences? (3) What were carers' main difficulties during the first pandemic wave? Results have shown that carers in both samples reported a worsening in mental health (Italy/Hungary: M = 2.25/2.55, SD = 0.93/0.99), and Italian carers also in general health (M = 2.54, SD = 0.98) (on a scale of 1 to 5, with values under "3" representing deterioration). Carers in both samples experienced high worry levels (Italy/Hungary: M = 4.2/3.7, SD = 0.93/0.89) and feeling overwhelmed with care tasks (M = 3.2/3.7, SD = 1.3/1.3) (on a scale of 1 to 5, higher values representing higher worry/work overload). In regression models, all of the above negative experiences were predicted by a combination of factors. Two of these factors stood out in importance due to being a predictor of more than one type of negative experience: a decline in the carer-care receiver relationship, predicting work overload, as well as general and mental health deterioration and being the child of the care receiver, predicting both high worry and subjective work overload. The top five encountered problems were the unavailability of medical and social care, difficulties with shopping (medicine included), restricted freedom, isolation, and anxiety.

The Impact of COVID-19 on the Health and Experience of the Carers of Older Family Members Living with Dementia: An Italian–Hungarian Comparative Study

This quantitative study (n = 370) compares the pandemic-related experiences of the family carers of older people living with dementia during the first wave of the pandemic, in two countries with different care regimes: Italy (Mediterranean) and Hungary (Eastern European). It aims at answering the following research questions: (1) How did the pandemic affect the subjective health of carers, and what were their experiences with care-related worries and workload? (2) What factors significantly predicted negative changes in these experiences? (3) What were carers’ main difficulties during the first pandemic wave? Results have shown that carers in both samples reported a worsening in mental health (Italy/Hungary: M = 2.25/2.55, SD = 0.93/0.99), and Italian carers also in general health (M = 2.54, SD = 0.98) (on a scale of 1 to 5, with values under “3” representing deterioration). Carers in both samples experienced high worry levels (Italy/Hungary: M = 4.2/3.7, SD = 0.93/0.89) and feeling overwhelmed with care tasks (M = 3.2/3.7, SD = 1.3/1.3) (on a scale of 1 to 5, higher values representing higher worry/work overload). In regression models, all of the above negative experiences were predicted by a combination of factors. Two of these factors stood out in importance due to being a predictor of more than one type of negative experience: a decline in the carer–care receiver relationship, predicting work overload, as well as general and mental health deterioration and being the child of the care receiver, predicting both high worry and subjective work overload. The top five encountered problems were the unavailability of medical and social care, difficulties with shopping (medicine included), restricted freedom, isolation, and anxiety.

START-online: acceptability and feasibility of an online intervention for carers of people living with dementia.

BACKGROUND: With increasing numbers of people living with dementia relying on family to care for them at home, there is an urgent need for practical and evidence-based programs to support carers in maintaining their mental health and well-being. The objective of this study was to evaluate the acceptability and feasibility of a modified STrAtegies for RelaTives (START) program delivered online (START-online). METHOD: A mixed-methods non-blinded evaluation of START-online (using Zoom as videoconferencing platform) for acceptability and feasibility (completion rates and qualitative feedback through surveys and focus groups) and quantitative evaluation. This occurred at the National Ageing Research Institute, in metropolitan Victoria, Australia. RESULTS: Twenty-nine eligible carers were referred, 20 (70%) consented to the study. Of these, 16 (80%) completed all 8 sessions, 2 completed only 3 sessions, and 2 withdrew. Carers' qualitative feedback indicated that the therapist interaction was valued, content and online delivery of the program was acceptable. Feedback was mixed on the appropriate stage of caring. CONCLUSION: START-online was feasible and acceptable for carers, including those living outside of metropolitan areas who might otherwise be unable to access face-to-face programs. With the recent COVID-19 pandemic necessitating social distancing to avoid infection, interventions such as this one have increasing relevance in the provision of flexible services.

Tensions and polarities in the autonomy of family carers in the context of the COVID-19 pandemic in France

This article analyses the impact of the COVID-19 lockdown on 'monetised' family carers' understanding of their own autonomy in a long-term care relation at home. The reduction or suspension of medico-social service deteriorated the situation of family carers of frail older people or people with disability. We develop and apply an analytical grid of 15 interviews of monetised family carers about the reorganisation of care systems and their situation as carers. We identify three types of understandings of autonomy among family carers in the context of the COVID-19 pandemic: preventive autonomy;health protection autonomy;and supported autonomy.

Family caregiving during the COVID-19 pandemic: factors associated with anxiety and depression of carers for community-dwelling older adults in Hong Kong.

BACKGROUND: The COVID-19 pandemic disrupts the daily routine and increases the caregiving load of the family carers of older adults. This study examined how the pandemic may impact mental health and investigated the prevalence of anxiety and depressive symptoms in family carers of older people. METHODS: Two hundred and thirty-six family carers of older adults participated in this cross-sectional survey study. Outcome measures included their symptoms of anxiety and depression, pandemic-related psychosocial factors, external factors, and the practice of preventive behaviours. RESULTS: Caseness prevalence of anxiety and depression among family carers was 25 and 56% respectively. Working carers were more depressed than non-working, while younger carers reported more anxiety and depression symptoms than older. Hand hygiene and getting drugs from the hospital positively predicted depression while healthy lifestyle negatively predicted depression. These variables, together with perceived risk and severity and the worry of getting infected, predicted anxiety. CONCLUSIONS: The prevalence of mental health symptoms was alarming. Telemedicine practice, including online pharmaceutical services and the Internet Hospital plus Drug Delivery platform, could be a solution in alleviating the burden and worry of infection of family carers. Tailored-made interventions by age and working status of the family carers are recommended.

The Impact of Social Distancing Due to the COVID-19 Pandemic on People with Dementia, Family Carers and Healthcare Professionals: A Qualitative Study.

Social distancing measures imposed because of the COVID-19 pandemic presented challenges to the health and wellbeing of people with dementia, family carers, and healthcare professionals. This study investigated the impact of these measures on all involved in the care for people with dementia. For this qualitative study, 20 family carers and 20 healthcare professionals from home care and long-term care (LTC) participated in a semi-structured interview. Interviews were analysed using an inductive thematic analysis approach. For people with dementia, the social distancing measures resulted in a deterioration of physical health. The impact on their emotional state and behaviour depended on the stage of dementia. Family carers experienced difficulty coping with visiting restrictions, anxiety regarding safety, and changes in carer burden. Healthcare professionals had an increased workload, and felt guilty about adhering to restrictive measures. Differences between home care and LTC were reported (i.e., societal initiatives focussed on LTC, scarcity of activities for community-dwelling people with dementia, use of personal protective equipment more intrusive for home care). The social distancing measures had a negative impact on persons with dementia, their family carers, and healthcare professionals. More attention is needed for community-dwelling people with dementia and family carers in times of social isolation.

'Four walls and a garden': Exploring the experiences of families affected by dementia during the COVID-19 pandemic.

INTRODUCTION: When the first national COVID-19 lockdown came into effect in the UK in March 2020, life changed significantly. Some services and social contacts for people with dementia and their families stopped, while others, for example, peer support, moved online. This research explored the experiences of families affected by dementia during the pandemic, specifically those living in the community. AIMS: In partnership with a community dementia charity, this study sought to gain an understanding of the experiences of people with dementia and family carers during the COVID-19 pandemic and explore the impact and implications of lockdown on people with dementia and family carers. METHODS: This was a qualitative study that used semi-structured interviews to collect data from people with dementia and family carers. Interviews were conducted online via video call, individually or within caring dyads. Initially, data were coded, analysed and themed inductively. Additionally, social disruption and social division theories were used to deductively identify patterns in the data to enhance understanding. FINDINGS: Six distinct themes were identified from the inductive analysis: Routine: 'busy life before lockdown'; Isolation: 'four walls and a garden'; Living with restrictions: 'treading on eggshells'; Discovering positives: 'you are in the same boat'; Easing lockdown: 'raring to go'; Heightened uncertainty: 'things have changed'. Illustrative examples of symptoms of social disruption and division were identified within the data: frustration, democratic disconnection, fragmentation, polarisation and escalation. CONCLUSION: Experiences of people with dementia and family carers during the pandemic were mixed, resulting in hopes and worries for the future. Social disruption and social division are relevant frameworks for analysing experiences of COVID-19.

Impact of the COVID-19 pandemic on family carers in the community: A scoping review.

The COVID-19 pandemic has led to the closure or reduction in support services for family carers, resulting in increased social isolation and stress for this population. The current scoping review aimed to identify the impact of COVID-19 upon carers and support provided for them during the pandemic. Four online databases (CINAHL, Medline, PsycINFO and PubMed) were systematically searched on 16th December 2020 and updated on 16th July 2021 for articles written in English and published after January 2020, focused on the carer and the impact of COVID-19. Google scholar and reference lists of relevant papers were checked, and key authors were contacted for further relevant information. The database searches identified 976 citations, which resulted in 670 unique articles following the removal of duplicates. Title and abstract screening identified 63 articles for full-text review, 11 of which were subsequently excluded, leaving 52 articles which were subject to inductive thematic analysis. Four key themes were identified. Whilst a number of issues were identified that were exacerbated by the pandemic, others directly resulting from it were revealed. Few studies discussed support measures for carers and only one trial evaluated an intervention. This review identifies the impact of COVID-19 on carers, but there is a dearth of evidence to inform appropriate tailored support. Governments need to identify carers as a priority group in social care reform and commission co-produced, evidence and experience informed pathways to reinstate support services, potentially modelled on pandemic plans following the example currently being considered for the paid healthcare workforce.

Challenges faced during the COVID-19 pandemic by family carers of people living with dementia towards the end of life.

BACKGROUND: People living with dementia account for a large proportion of deaths due to COVID-19. Family carers are faced with making significant and emotive decisions during the pandemic, including decisions about end of life. We aimed to explore the challenges faced by family carers of people living with dementia during the first wave of the COVID-19 pandemic in England, as reported by charity telephone support line staff, who were able to objectively discuss a range of different experiences of many different carers who call the helpline. In particular, we focussed on key concerns and areas of decision making at the end of life. METHODS: We conducted a qualitative study using semi-structured interviews with eight telephone support line staff from two UK based charities who support carers of people living with dementia and those at the end of life. Interviews were conducted in the first wave of the pandemic in England in May-June 2020. RESULTS: An overarching theme of uncertainty and reactivity during a crisis was identified, and within this, five main themes were identified: concerns about care transitions, uncertainty in engaging support and help, pandemic-motivated care planning, maintaining the wellbeing of the person living with dementia, and trust, loss of agency and confusion. CONCLUSIONS: Family carers may be reluctant to seek support because of fear of what may happen to their relative, which may include hospitalisation and becoming ill with COVID-19, care home placement, or not being able to be with a relative at the end of life. In some cases, a lack of trust has developed, and instead carers are seeking support from alternative services they trust such as nationally known charities.This study was used to inform the development of a decision aid to support family carers making decisions about care for their relative with dementia during the pandemic, who the lack the capacity to make their own decisions.

COVID-19 Vaccine Literacy of Family Carers for Their Older Parents in Japan.

In super-ageing Japan, COVID-19 vaccinations were starting to reach older people as of June 2021, which raises the issue of vaccine literacy. This study focuses on family members who work and also care for their older parents, as they are at risk of COVID-19 and also risk transmitting COVID-19 to the parents they care for and potentially influencing their parents' vaccine uptake. Such family carers are central to the approach in Japan to achieving a sustainable and resilient society in response to ageing. Contrasting family carers' COVID-19 vaccine literacy with their overall health literacy provides insights into their preparedness for COVID-19 vaccinations. The purpose of this study is to understand how vaccine literacy, compared to health literacy, varies across family carers and the sources of information they use. Through a cross-sectional online survey, family carers' vaccine literacy, health literacy and their sources of information, including mass media, social media, health and care professionals, family, colleagues, friends, and others, were assessed. The participants' (n = 292) mean age was 53, with 44% women, and an average of 8.3 h per week caring for their parents. Notwithstanding the increased risks from COVID-19 with age, COVID-19 vaccine literacy relative to health literacy for older family carers is lower on average, higher with increased provision of care, and more variable, resulting in a substantial proportion of older family carers with relatively low vaccine literacy. At this stage of vaccine rollout in Japan, family carers' sources of information to inform COVID-19 vaccine literacy is distinct, including more national and local mass media versus less health and care professionals and informal networks, which indicates the importance of tailored health communication strategies to enhance vaccine literacy.

Colliding worlds: Family carers' experiences of balancing work and care in Ireland during the COVID-19 pandemic.

The Coronavirus disease 2019 (COVID-19) pandemic public health and social protective measures imposed globally resulted in partial or full closure of key services and supports for services and supports for people with a disability, chronic illness or age-related dependency. This caused huge disruption to care provision and family carers were relied upon to assume this care at home. Many family carers, including those in employment, found themselves navigating additional care responsibilities without 'usual levels' of support from family, friends, work, school, day care services, homecare and community services. The purpose of this study was to examine the impact of the COVID-19 pandemic on family carers, their employment and care-giving responsibilities, through the lens of the Conservation of Resources (COR) theory (Hobfoll, 1989). Adopting a qualitative research approach, 16 family carers (14 females, 2 males) who were in employment prior to the onset of or during the pandemic, participated in an in-depth, semi-structured telephone or online video interview between June and September 2020. Interviews lasted between 45 and 100 min, were audio-recorded and transcribed verbatim. A thematic analysis of the interview data identified four main themes: colliding worlds; navigating unchartered waters alone; opportunity despite adversity and the relentless unknowing. Findings indicate that the onset of the pandemic resulted in the sudden loss of valued resources, which disrupted routines and caused care and work life domains to become intrinsically intertwined. Consistent with the main principles of the COR theory, adapting and transitioning to different ways of working and caring with depleted resources and supports, generated considerable stress for family carers and impacted their well-being. The implications for employers, healthcare providers, policy makers and other key stakeholders are considered, to enable family carers to successfully reconcile work with care and protect their well-being, as the pandemic continues to unfold and in the event of future societal crises.

The invisible workforce during the COVID-19 pandemic: Family carers at the frontline.

This is an open letter to acknowledge the essential and increasingly challenging role unpaid family carers are playing in the COVID-19 pandemic. The letter is written by members of the CAREWELL team, a HRB-funded project that aims to promote health and self-care behaviours among working family carers. Family carers provide care to family and friends in the community who need support due to old-age, disability and chronic illness. In many cases, family carers are supporting those who are considered most at risk in this pandemic meaning carers must reduce their own risk of infection in order to protect their dependent family members. The temporary reduction of some home care services, as well as school and creche closures, means that family carers are providing increased levels of care with little or no support. At a time when both worlds of work and care have been dramatically transformed, we wish to shed light on those who are currently balancing paid employment with a family caregiving role. We argue that there is much to be learned from the recent work restrictions that could benefit employees, including working family carers, beyond this pandemic. We also wish to build on the potential positives of a transformed society and encourage policy makers and employers to focus on what is currently being implemented, and to identify which measures could be used to create a bedrock of policies and practices that would offer robust and effective support to family carers. It is hoped that family carers will receive greater recognition for the significant role they play in society, providing essential care and alleviating the strain on health and social care systems, both during and post the COVID-19 pandemic.