Search

Introduction: In response to COVID‐19 and mandated physical distancing, a new digital social connection program was developed and implemented by the local community in a large regional town in western Victoria, Australia. This pilot program, the Digital Inclusion‐Social Connections (DI‐SC) program, aimed to support people living with dementia to use a digital device to access social connection activities. Objective: The objective of this study is to inform the local community implementing the DI‐SC program of key stakeholder experience of DI‐SC process and outcomes to support future development and potential translation of digital social connections programs for people living with dementia. Design: Three semi‐structured focus groups and two interviews were conducted with a total of fifteen participants. Data was transcribed verbatim and thematically analysed. Findings: Three main themes were identified describing factors as influencing the process and outcomes of the DI‐SC program: understanding dementia; personal choice and control; and service planning and coordination. Six sub‐themes were identified: matching capability; establishing a relationship; creating opportunities for different interactions; ownership of the device, program coordination and defining the volunteer digital mentor role. Conclusion: Key stakeholders perceived the DI‐SC program as an acceptable way of supporting people living with dementia to engage in activities they found enjoyable promoting social connection with care partners and others. DI‐SC program outcomes were impacted by inappropriate training and a lack of program coordination. The findings of this study may inform future development and implementation of digital social connection programs for vulnerable populations at risk of social isolation. [ABSTRACT FROM AUTHOR]

Objectives: Many family carers of a person with dementia experience pre‐death grief. We aimed to identify strategies that help carers manage pre‐death grief. We hypothesised that emotion and problem focussed styles would be associated with lower, and dysfunctional coping with higher grief intensity. Methods: Mixed methods observational study using structured and semi‐structured interviews with 150 family carers of people with dementia living at home or in a care home. Most participants were female (77%), caring for a parent (48%) or partner/spouse (47%) with mild (25%), moderate (43%) or severe (32%) dementia. They completed the Marwit‐Meuser Caregiver Grief Inventory Short Form and the Brief Coping Orientation to Problems Experienced (Brief‐COPE) questionnaire. We asked carers to identify strategies used for managing grief. We recorded field notes for 150 interviews and audio‐recorded additional interviews with a sub‐sample of 16 participants. Results: Correlations indicated that emotion‐oriented coping was associated with lower grief (R = −0.341), and dysfunctional coping with higher grief (R = 0.435), with a small association with problem‐focused strategies (R = −0.109), partly supporting our hypothesis. Our qualitative themes broadly match the three Brief‐COPE styles. Unhelpful strategies of denial and avoidance align with dysfunctional coping strategies. Psychological strategies (including acceptance and humour) and seeking support were consistent with emotion‐focused strategies, but we did not identify a theme relating to problem‐focused strategies. Conclusion: Most carers identified multiple strategies for processing grief. Carers could readily identify supports and services that they found helpful for managing pre‐death grief, yet current services appear under‐resourced to meet growing demand. [ABSTRACT FROM AUTHOR]

The aim of this paper was to understand the needs of family caregivers and professionals supporting people living with dementia with eating and drinking difficulties towards the end of life and the strategies they use to overcome them. A total of 41 semi‐structured interviews with family caregivers (n = 21) and professionals (n = 20) were conducted in London and surrounding areas of England. Interviews were audio‐recorded and transcribed verbatim. Four themes were identified: caregivers accessing and seeking help, perceived priorities of care, professionals' supportiveness and educational role, and strategies. Caregivers often struggle as they are not aware of the eating and drinking difficulties associated with dementia's progression. Care can change over time with families prioritising a person's comfort towards the end of life rather than ensuring a particular level of nutrition. Mutual support is required by both professionals and caregivers to enhance the care of the person living with dementia. Cognitive difficulties are often behind initial eating and drinking challenges in dementia, whereas physical challenges take over towards the later stages. Flexibility and creativity are key to adapting to changing needs. There is a need to raise awareness of the eating and drinking challenges associated with the progression of dementia. Professionals can help caregivers embark on the transition towards focussing on comfort and enjoyment of eating and drinking near the end of life rather than nutrition. This is particularly relevant for those caring for a relative living at home. Caregivers' input is needed to tailor professionals' recommendations. [ABSTRACT FROM AUTHOR]