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Aims: The aim of this study was to identify features of well-performing residential aged care services (RACS) as experienced by family carers., Background: Family carers can have an integral role in residential aged care providing social support and are well-placed to engage with staff and monitor care., Design: A qualitative descriptive design was used. Semi-structured face-to-face and telephone interviews were conducted with family carers of current or past residents of Australian RACS between November 2018 and January 2019. Interview transcripts were analysed thematically., Results: Rather than reporting features of well-performing RACS, participants shared stories of sub-standard care, dysfunctional management and poor resident-staff-family interactions. An overarching theme emerged of 'having to be an advocate' for residents' needs, which covered four major categories: organisational accountability (including transparency and individualised care), good communication, connection and trust. Combined, these constitute what carers perceive are the necessary conditions for determining the features of a well-performing RACS., Conclusion: Family carers need to feel confident and trust RACS staff when they hand over the role of carer for their relative with dementia., Relevance to Clinical Practice: This study provides insight into the needs and challenges of family carers when they relinquish the care of an older relative with dementia. Strategies to build confidence and trust between RACS and family carers are essential. Aged care nurses can play a pivotal role to support this through the development of open communication and relational connections with residents and their families., (© 2020 John Wiley & Sons Ltd.)

In Australia, the majority of people with dementia live in the community with informal care provided by family, commonly a spouse. A diagnosis of dementia is a threat to one's personhood and is often accompanied by perceptions of future dependency, which will involve the inability to carry out conventional roles and complete everyday tasks including making decisions. Being able to make decisions, however, is part of being a 'person' and it is through relationships that personhood is defined and constructed. In face-to-face interviews with seven couples (a carer and person with dementia dyad) and two spouse carers, this study explored why, and how, spouse carers support continued involvement in decision-making for people with dementia. The findings highlight the importance of loving and respectful relationships in the development of strategies to support continued decision-making for people with dementia.

Objective: The support and service needs of people with dementia and their carers are not always addressed in rural regions, yet family carers play an important role in supporting the person living with dementia to remain living in their own home. This study sought to identify and prioritise service and support needs of people with dementia and carers., Design: A two-phase mixed methods study involving qualitative focus groups and a survey., Setting: A rural region in Victoria, Australia., Participants: People living with dementia, carers and health professionals., Results: Focus groups identified 12 areas of need. A follow-up survey reached consensus on the priority areas for service improvement. These included diagnosis and information access, dementia training, community understanding and carer support., Conclusion: Living in a rural region imposes significant challenges on people with dementia and carers. We need to find ways to address gaps in service provision for carers and people with dementia in rural settings and examine their applicability in other rural regions more broadly., (© 2019 National Rural Health Alliance Ltd.)

The prevalence of dementia will continue to increase with the ageing of the population. Many people living with dementia will reach a stage where surrogate decision-makers-mostly family carers-will need to make a range of decisions on their behalf. The aim of this study was to learn from surrogate decision-makers how they can be most effectively supported in this role. The study employed a qualitative design using semi-structured face-to-face or telephone interviews with a purposive sample of 34 surrogate decision-makers of people living with dementia. Transcripts of participant interviews were reviewed using a thematic approach to analysis. Four main themes were identified from this analysis: needing greater community awareness of dementia and its impact; intervening early in cognitive decline; relying on health professionals for ongoing support; and seeking and using support from wherever is relevant for each person. Based on this analysis and a review of the literature, we propose a wholistic set of recommendations for the support of surrogate decision-makers. Healthcare professionals need to help family carers understand the likely trajectory of dementia, including the significance of surrogate decision-making. They can support the person living with dementia and their surrogates to undertake advance care planning and they can act as empathic guides during this process. Health and community care organisations need to provide a "key worker" model wherever possible so that the person living with dementia and their surrogate decision-maker do not have to seek support from multiple staff members or organisations. Carer support programmes can routinely include information and resources about surrogate decision-making. Community and government organisations can help people prepare for the possibility of becoming surrogate decision-makers by promoting a greater public awareness and understanding of both dementia and advance care planning., (© 2017 John Wiley & Sons Ltd.)

This paper reports on a study exploring the experiences and meaning of social participation for family carers of people living with dementia. Participants were 33 family carers (17 spouses and 16 adult children) of older adults diagnosed with dementia (any stage or type) who responded to advertisements by the national Alzheimer's association, Alzheimer's Australia. Data were collected through semi-structured face-to-face and/or telephone interviews using an interview guide, which included prompts such as 'Tell me about what social participation means to you', and 'How did this change…'. The methods of grounded theory were drawn upon to guide sampling and analysis of data, which continued until theoretical saturation was achieved and occurred over the period September 2011 to March 2012. Data arising from the interviews were analysed line-by-line and coded and categorised using the constant comparative method, with codes clustered into themes and with abstraction from the themes to arrive at the core process. The core category arising from the data was adaptation, which encompassed four main themes: autonomy to choose; the impact of care-giving; employing strategies; and establishing meaningful connections. Carers went through a process whereby the ways in which they had previously participated socially were compromised, which often prompted an exploration of new ways in which to remain socially engaged., (© 2014 John Wiley & Sons Ltd.)