Unpaid carers' experiences of supporting people with dementia to use social media.

Objectives: The aim of this study was to explore unpaid carers' experiences of supporting people with dementia to use social media.Methods: Unpaid carers (n = 234) responded to an online survey about their attitudes towards people with dementia using social media and any experiences supporting this usage. Responses to closed questions were analysed using frequency analysis; qualitative data were analysed thematically.Results: Fifty-five carers (23.5%) cared for someone with dementia who used social media. Thematic analysis produced four themes: (1) carers as social media navigators; (2) social media supports care; (3) carers as social media guardians; and (4) labour-intensive work. Carers valued the social connectivity and stimulation social media provided but remained vigilant about online safety. They carefully managed the online experiences of people with dementia, balancing perceived benefits with safety, security, and caring demands.Conclusions: These findings shed light on the complexities of caring in the digital age. Many carers are supporting people with dementia in using social media, but there is little guidance on how best to do this. As older adults continue to embrace social media, carers, support organisations, and policymakers must adapt and work with technology developers to ensure safe and supportive online experiences.

A systematic review on inequalities in accessing and using community-based social care in dementia.

OBJECTIVES: To evaluate and synthesize the evidence base on barriers and facilitators to accessing and using community-based social care in dementia. DESIGN: Mixed-methods systematic review. SETTING: Community-based social care (such as day care, respite care, paid home care, and peer support groups). PARTICIPANTS: People living with dementia and unpaid carers. MEASUREMENTS: Seven databases were searched in March 2022, including English and German evidence published from 2000 focusing on inequalities in community-based social care for dementia across the globe. Titles and abstracts were screened by two reviewers, with all full texts screened by two reviewers also. Study quality was assessed using QualSyst. RESULTS: From 3,904 screened records, 39 papers were included. The majority of studies were qualitative, with 23 countries represented. Barriers and facilitators could be categorized into the following five categories/themes: situational, psychological, interpersonal, structural, and cultural. Barriers were notably more prominent than facilitators and were multifaceted, with many factors hindering or facilitating access to social care linked together. CONCLUSIONS: People with dementia and carers experience significant barriers in accessing care in the community, and a varied approach on multiple levels is required to address systemic and individual-level barriers to enable more equitable access to care for all.

What are the Challenges and Resilience Resources Identified by Informal Carers During the First UK COVID-19 Lockdown? A Longitudinal Qualitative Study Using Naturalistic Data.

COVID-19 has posed serious challenges for informal carers living in the UK. This article examines some of the specific challenges facing carers and the resources they used to manage them throughout the first UK lockdown. We used a framework approach to analyse naturalistic, longitudinal data from 30 carers taking part in 96 of Mobilise's daily Virtual Cuppas between March and July 2020. We found that lack of information and social restrictions cumulatively impacted carers' sense of certainty, control and motivation. This took an emotional toll on the carers, leading to exhaustion and burden. However, carers quickly established new routines and used humour and self-care to actively manage their wellbeing. Carers received support but also provided it to those in need, including fellow members of the caregiving community, supporting an ecological approach to carer resilience. Our findings may be used to anticipate challenges and promote protective resilience resources in future lockdowns.

Exploring Resilience in UK-Based Domiciliary Care Workers before and during the COVID-19 Pandemic.

Domiciliary carers (DCs) provide an invaluable service that enables people living with dementia (PLWD) to remain living in their own homes for as long as possible. We know a lot about the negative impacts of providing domiciliary care and recent evidence suggests that this was exacerbated by the COVID-19 pandemic. However, we know much less about how these DCs manage the stressors associated with their roles. The current study adopts a resilience perspective to identify the resources that DCs caring for PLWD draw on to manage the stress associated with their roles before and during the COVID-19 pandemic. We conducted semi-structured interviews with 19 DCs from across the UK. Data were analysed using a directed qualitative content analysis. Themes included: healthy boundaries; motivation to care; psychological attributes; managing work; and support. The findings have implications for employers and may go some way towards improving DC working conditions, retaining staff, and attracting new DCs in the future.

Emotional Word Use in Informal Carers of People Living With Dementia: Linguistic Analysis of Online Discussion Forums.

BACKGROUND: Informal dementia care is uniquely stressful and necessitates effective methods of identifying and understanding the needs of potentially at-risk carers so that they can be supported and sustained in their roles. One such method is examining carers' engagement in online support platforms. Research has explored emotional word use on online discussion forums as a proxy for underlying emotional functioning. We are not aware of any research that has analyzed the content of posts on discussion forums specific to carers of people living with dementia in order to examine their emotional states. OBJECTIVE: We addressed the following research questions: (1) To what extent does emotional language use differ between carers of people living with dementia and noncarers? (2) To what extent does emotional language use differ between spousal and parental carers? (3) To what extent does emotional language use differ between current and former carers? METHODS: We used the Linguistic Inquiry and Word Count (LIWC) program to examine emotional word use on a UK-based online forum for informal carers of people living with dementia and a discussion forum control group. Carers were separated into different subgroups for the analysis: current and former, and spousal and parental. RESULTS: We found that carers of people living with dementia used significantly more negative, but not positive, emotion words than noncarers. Spousal carers used more emotion words overall than parental carers, specifically more negative emotion words. Former carers used more emotional words overall than current carers, specifically more positive words. CONCLUSIONS: The findings suggest that informal carers of people living with dementia may be at increased risk of negative emotional states relative to noncarers. Greater negativity in spousal carers may be explained by increased caregiver burden, whereas greater positivity in former carers may be explained by functional relief of caregiving responsibilities. The theoretical/applied relevance of these findings is discussed.

Resilience and post-traumatic growth in the transition to motherhood during the COVID-19 pandemic: A qualitative exploratory study.

Most perinatal research relating to COVID-19 focuses on its negative impact on maternal and parental mental health. Currently, there are limited data on how to optimise positive health during the pandemic. We aimed to bridge this knowledge gap by exploring how women have adapted to becoming a new parent during the pandemic and to identify elements of resilience and growth within their narratives. Mothers of infants under the age of 4 months were recruited as part of a wider UK mixed-methods study. Semi-structured interviews with 20 mothers elicited data about how COVID-19 had influenced their transition to parent a new infant, and if and how they adapted during the pandemic, what strategies they used, and if and how these had been effective. Directed qualitative content analysis was undertaken, and pre-existing theoretical frameworks of resilience and post-traumatic growth (PTG) were used to analyse and interpret the data set. The findings show evidence of a range of resilience and PTG concepts experienced during the pandemic in this cohort. Salient resilience themes included personal (active coping, reflective functioning, and meaning-making), relational (social support, partner relationships, and family relationships), and contextual (health and social connectedness) factors. There was also evidence of PTG in terms of the potential for new work-related and leisure opportunities, and women developing wider and more meaningful connections with others. Although further research is needed, and with individuals from diverse socioeconomic backgrounds, these findings emphasise the significance of social support and connectivity as vital to positive mental health. Opportunities to increase digital innovations to connect and support new parents should be maximised to buffer the negative impacts of further social distancing and crisis situations.

Resilience and supporting people living with dementia during the time of COVID-19; A qualitative study.

OBJECTIVES: To explore the different factors of resilience for people living with dementia and unpaid carers, in response to sudden changes in care and lifestyle during the COVID-19 pandemic. METHODS: Unpaid carers and people living with dementia were offered telephone interviews in April 2020 to discuss their experiences since the COVID-19 pandemic. Participants were asked about the benefits and challenges of accessing dementia support, as well as coping, symptoms, strategies and impacts. Each transcript was analysed using inductive and deductive thematic analysis by two researchers. FINDINGS: Semi-structured interviews from 50 participants (n = 42 unpaid carers and n = 8 people living with dementia) reported protective and risk factors of resilience concerning (1) communication, (2) adaptations, (3) support networks and (4) lifestyle factors and coping mechanisms. CONCLUSIONS: Resilience factors considered both organisational factors for external support, along with individual coping mechanisms. Organisations and social support services should consider resilience factors in future service planning, to better support people living with dementia, or caring someone living with dementia, during times of great stress. The ecological model of resilience established from this research refers to resilience during times of unexpected change in the COVID-19 pandemic; however, it could be considered relevant in other periods of high stress within this cohort.

Are public health measures and individualised care compatible in the face of a pandemic? A national observational study of bereaved relatives' experiences during the COVID-19 pandemic.

BACKGROUND: COVID-19 public health restrictions have affected end-of-life care experiences for dying patients and their families. AIM: To explore bereaved relatives' experiences of quality of care and family support provided during the last days of life; to identify the impact of factors associated with perceived support. DESIGN: A national, observational, open online survey was developed and disseminated via social media, public fora and professional networks (June-September 2020). Validated instruments and purposively designed questions assessed experiences. Analysis used descriptive statistics, logistic regression and thematic analysis of free-text responses. PARTICIPANTS: Individuals (⩾18 years) who had experienced the death of a relative/friend (all care settings) within the United Kingdome during the COVID-19 pandemic. RESULTS: Respondents (n = 278, mean 53.4 years) tended to be female (n = 216, 78%); over half were 'son/daughter' (174, 62.6%) to the deceased. Deceased individuals (mean 81.6 years) most frequently died in their 'usual place of care' (n = 192, 69.3%). Analysis established five conceptual themes affecting individualised care: (1) public health restrictions compounding the distress of 'not knowing'; (2) disparate views about support from doctors and nurses; (3) challenges in communication and level of preparedness for the death; (4) delivery of compassionate care; (5) emotional needs and potential impact on grief. Male respondents (OR 2.9, p = 0.03) and those able to visit (OR 2.2, p = 0.04) were independently associated with good perceptions of family support. CONCLUSION: Despite public health restrictions, individualised care can be enabled by proactive, informative communication; recognising dying in a timely manner and facilitating the ability to be present before death.

Health and social care professionals' experiences of providing end of life care during the COVID-19 pandemic: A qualitative study.

BACKGROUND: Health and social care professionals' ability to address the needs of patients and their relatives at end of life is likely to have been impacted by the COVID-19 pandemic. AIM: To explore health and social care professionals' experiences of providing end of life care during the COVID-19 pandemic to help inform current/future clinical practice and policy. DESIGN: A qualitative interview study. Data were analysed using thematic analysis. SETTING/PARTICIPANTS: Sixteen health and social care professionals working across a range of clinical settings in supporting dying patients during the first wave (March-June 2020) of the COVID-19 pandemic in the United Kingdom. RESULTS: Participants reported emotional and practical challenges to providing end of life care during the pandemic, including increases in patient numbers, reduced staffing levels and relying on virtual platforms for sensitive, emotive conversations with relatives. Participants were central to promoting connections between patients and their families at end of life and creating opportunities for a final contact before the death. However, the provision of support varied as a consequence of the pressures of the pandemic. Results are discussed under two themes: (1) challenges and facilitators to providing end of life care, and (2) support needs of relatives when a family member was dying during the COVID-19 pandemic. CONCLUSION: There is a need for flexible visiting arrangements at end of life during a pandemic. A systems-level approach is necessary to promote the wellbeing of health and social care professionals providing end of life care during and after a pandemic.

A qualitative study of bereaved relatives' end of life experiences during the COVID-19 pandemic.

BACKGROUND: Meeting the needs of relatives when a family member is dying can help facilitate better psychological adjustment in their grief. However, end of life experiences for families are likely to have been deleteriously impacted by the COVID-19 crisis. Understanding how families' needs can be met during a global pandemic will have current/future relevance for clinical practice and policy. AIM: To explore relatives' experiences and needs when a family member was dying during the COVID-19 pandemic. DESIGN: Interpretative qualitative study using semi-structured interviews. Data were analysed thematically. SETTING/PARTICIPANTS: A total of 19 relatives whose family member died during the COVID-19 pandemic in the United Kingdom. RESULTS: In the absence of direct physical contact, it was important for families to have a clear understanding of their family member's condition and declining health, stay connected with them in the final weeks/days of life and have the opportunity for a final contact before they died. Health and social care professionals were instrumental to providing these aspects of care, but faced practical challenges in achieving these. Results are presented within three themes: (1) entering into the final weeks and days of life during a pandemic, (2) navigating the final weeks of life during a pandemic and (3) the importance of 'saying goodbye' in a pandemic. CONCLUSIONS: Health and social care professionals can have an important role in mitigating the absence of relatives' visits at end of life during a pandemic. Strategies include prioritising virtual connectedness and creating alternative opportunities for relatives to 'say goodbye'.

How does carer resilience change over time and care status? A qualitative longitudinal study.

Objectives: Little research examines trajectories of carer resilience or the factors that facilitate or hinder resilience over time. We use qualitative longitudinal methods to examine trajectories of resilience and which assets and resources are associated with resilience and care status transitions in spousal dementia carers. Method: Based on an original sample of 23 spousal dementia carers (Donnellan, Bennett, & Soulsby, 2015 ), we conducted 13 follow-up interviews, including: 5 continuing home carers, 3 former carers (institutionalised), and 5 former carers (widowed). Results: Five participants remained resilient (stable resilient), three remained non-resilient (stable non-resilient) and four participants became resilient (non-resilient to resilient). Only one participant became non-resilient (resilient to non-resilient). Stable resilience was characterised by continuing individual assets and community resources. Carers who became resilient returned to previous resources, or gained new resources. Conclusion: Institutionalisation and widowhood are not always barriers to resilience; spousal dementia carers can remain or even become resilient over time despite deteriorating health, institutionalisation, or death of the care recipient.

Exploring dimensions of social support and resilience when providing care at the end of life: a qualitative study.

Background: Research shows that formal and informal social support can facilitate resilience in carers. There is a paucity of research exploring social support and resilience amongst recently bereaved informal carers. Aim: To examine how the presence or absence of distinct dimensions of social support facilitate or hinder resilience in recently bereaved informal carers. Participants: 44 bereaved carers, who had been identified by GP as 'main carer' of someone recently deceased (3-12 months), aged between 38 and 87 years old (mean= 67). Methods: Thematic analysis then the Ecological Framework of Resilience as an organisational tool to develop overarching themes in the data. We used the Sherbourne and Stewart model to identify social support that was lacking as well as social support that was present. Results: A range of social support types were identified. There was an emphasis on the importance of relationships with both health professionals and family members, including the care recipient. However, social support was not necessary for resilience if the participant had other resources. Conclusions: Social support for carers providing end of life care is almost exclusively based around end of life care 'work'. In comparison to other research our study suggests that relationships with family and health professionals are paramount. Multidimensional support is needed for carers to enhance their resilience.

Exploring the nature of illness perceptions in people with end-stage kidney disease.

BACKGROUND: Diagnosis and treatment for End-Stage Kidney Disease (ESKD) results in vast lifestyle changes. Despite the high prevalence of depression in people with ESKD, the psychosocial impacts of ESKD are still often overlooked. Illness perceptions enable people to make sense of their illness and are closely associated with depression. Due to the high levels of depression within ESKD, this study sought to understand the nature of illness perceptions in people with ESKD. METHODOLOGY: In this qualitative study, eleven participants were identified through hospital and online patient support groups. Semi-structured interviews were audio-taped, transcribed and analysed using grounded theory techniques. RESULTS: Three themes emerged from the data: Renal Conflicts, Forced Adjustment and Coping. The main dimensions of illness perception discussed by participants were Consequences, Control, Timeline and Identity. CONCLUSION: The results of this study have practical implications for informing practitioners about the psychosocial effects of ESKD diagnosis and treatment.

Family close but friends closer: exploring social support and resilience in older spousal dementia carers.

OBJECTIVES: Spousal dementia carers have unique support needs; they are likely to disengage from their existing social networks as they need to devote more time to caring as the disease progresses. Previously we showed that support resources can facilitate resilience in carers, but the relationship is complex and varies by relationship type. The current paper aims to explore social support as a key component of resilience to identify the availability, function and perceived functional aspects of support provided to older spousal dementia carers. METHOD: We conducted 23 in-depth qualitative interviews with spousal carers from two carer support groups and a care home in North West England. RESULTS: Family and friends served a wide range of functions but were equally available to resilient and non-resilient participants. Family support was perceived as unhelpful if it created feelings of over-dependence. Participants were less likely to resist involvement of grandchildren due to their relatively narrow and low-level support functions. Friend support was perceived as most helpful when it derived from those in similar circumstances. Neighbours played a functionally unique role of crisis management. These perceptions may moderate the effect of support on resilience. CONCLUSION: Family and friend support is not always sufficient to facilitate resilience. Support functions facilitate resilience only if they are perceived to match need. Implications of these findings are discussed.

What are the factors that facilitate or hinder resilience in older spousal dementia carers? A qualitative study.

OBJECTIVES: Much is known about the factors making caring for a spouse with dementia burdensome. However, relatively little is known about factors that help some spouses become resilient. We define resilience as 'the process of negotiating, managing and adapting to significant sources of stress or trauma'. We aimed to assess whether spousal dementia carers can achieve resilience and to highlight which assets and resources they draw on to facilitate or hinder resilience, using an ecological framework . METHOD: Twenty in-depth qualitative interviews with spousal carers from two carer support groups and a care home in North West England. RESULTS: Eight participants were resilient and 12 were not. A resilient carer was characterised as someone who stays positive and actively maintained their relationship and loved one's former self. Resilient carers were knowledgeable and well supported by family but especially friends, with whom they shared this knowledge. They were more actively engaged with services such as respite care. CONCLUSION: There is a need to move towards more ecological models of resilience. We propose that access to assets and resources is not always sufficient to facilitate resilience. Implications of these findings are discussed.