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.

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.