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This study aims to describe the current conceptualisation of self-management of dementia by family carers in the literature and from the views of dementia professionals and family carers, and to establish a more comprehensive concept of self-management of dementia by family carers.

A hybrid concept analysis included three phases: the theoretical phase reviewed the literature on self-management of dementia by family carers; the fieldwork phase interviewed professionals and family carers; and the analytical phase synthesised and discussed the findings from the previous two phases.

The findings revealed that self-management of dementia by family carers encompasses four domains: supporting care recipients, self-care, sustaining a positive relationship with care recipients, and personal characteristics and skills.

The findings highlighted the essential elements of the construct of self-management of dementia by family carers. The findings can be used as a conceptual framework of self-management and are useful in designing and evaluating self-management support interventions for family carers.

The study aims to identify the predictors of depression and anxiety among carers of hospitalized patients with mental illness in Eradah Complex for Mental Health Hospital.

A descriptive correlational study design was conducted using a convenient sample of family carers of patients with mental illness (N = 216). The study used the Beck Depression Inventory and Anxiety Inventory scales.

The results of regression models revealed that the socio-demographic characteristics of the family carers showed that age is a statistically significant predictor of family carers depression and anxiety scores. In addition, the age of the family carers explained 36% of the variance in the family carers depression and anxiety scores, while marital status explained 64% of the total variance in the family carers’ depression and anxiety scores. Furthermore, having received support in caring significantly predicted depression and anxiety scores, and this was the case for occupation status and being diagnosed with any form of chronic illness.

Based on the findings of this study, the authors opine that evaluations of carers’ cognitive strategies and social support are needed to determine the risk of depression in carers of mental patients.

This study is the one of the limited studies conducted in Saudi Arabia to identify predictor of depression and anxiety among caregivers of hospitalized patients with mental illness. The study has used a validated scales to assess the main study outcomes.

Those who care for people with schizophrenia and substance use disorders (PLS-SUD) are faced with the complex demands of a long journey to recovery. For the carers, this translates into specific needs related to various areas of their lives. However, few studies have contributed to the understanding of these carers’ needs. The purpose of this qualitative evaluative study is to identify, understand and prioritize the needs of PLS-SUD carers in the context of intervention design from the viewpoint of carers themselves (n = 9), those they were accompanying (n = 5) and other key actors involved (n = 10).

A design of action research was employed. Data analysis was done in three phases: concept map analysis, thematic analysis and transversal analysis of the results from two focus groups, 28 interview transcriptions and a logbook.

Over 60 needs were identified. After review, 39 of those were selected for prioritization. For needs related to the carers’ role as clients of the health-care system, the committee prioritized the needs for support, sharing with other carers and improving their own well-being. For the role of supporter, knowledge about substance use disorders and their interactions with psychotic disorders as well as skills such as communication and problem resolution were considered priorities. Needs to be prioritized relating to the role of partner were fewer.

The results of this study highlight the diversity and complexity of the needs experienced by carers.

This is among the first needs surveys carried out by stakeholders to describe the needs of PLS-SUD carers.

This chapter intends to provoke thought around assumptions about young people providing care, what influences how young carers are perceived and how stigma and judgement associated with caring are discussed. We conclude by emphasising the significance of the role as an educator in creating discussion about the breadth and diversity of care experiences. This role includes both educating young people about young caring and being mindful that your students may currently be or previously been a young carer.

Deaf people, who are British Sign Language (BSL) users, are, at times, carers for their parent or spouse when they have dementia. This can be a challenging role for the wider population, but if the common language in service provision is not one you share, then this care can be impacted by the lack of formal structures that support the Deaf caring role. This study aims to explore the experiences of Deaf carers supporting people with dementia, in an unpaid role, during the COVID-19 pandemic to understand more about their potential support preferences.

Online interviews with seven Deaf carers sharing their experiences of supporting their family member with dementia happened during the first year of the COVID-19 pandemic. Interpretive phenomenological analysis was used to qualitatively examine each Deaf carers’ stories.

Findings included Deaf carers’ lack of access to information, surrendering their autonomy to hearing family members to communicate with health-care professionals, with overarching isolation within local communities and online. Findings show a widespread infrastructural failure to meet the linguistic and specific support needs of this minority population.

Seven Deaf carers took part in this study. This means the findings may not be generalisable.

Health-care professionals and social care structures need to develop robust clear communication pathways for Deaf carers to receive the support needed to provide effective care.

If health-care professionals undertake training about Deaf people and BSL, that will mean Deaf carers will receive effective support to be able to care for a person living with dementia. This means that their Deaf identity will be recognised within the mainstream and the care provided will be much more effective for the person with dementia.

To the best of the authors’ knowledge, these are the first interviews undertaken with Deaf carers of people with dementia during the COVID-19 pandemic and its subsequent lockdowns. Understanding everyday barriers and social care limitations in terms of language access will enable Deaf carers to assert their rights and for care professionals to adapt their communication to match the individuals involved in the care package.

This paper aims to outline the process of developing a new co-produced virtual group support programme called Positive Family Connections (PFC) aimed at family carers of children with a learning disability, or who are autistic, aged between 8 and 13 years.

Development process: family carers were recruited to develop PFC prior to a feasibility randomised controlled trial being conducted (not reported in this paper). The programme was positively oriented and family systems-focused. PFC was developed by family carers, along with the research team, and designed to be delivered by family carer facilitators. The development process included several meetings to design the format and content of the programme. An initial pilot was then delivered and further amendments made to the programme in response to the pilot participants’ feedback.

The programme: the co-produced PFC programme involved attending six weekly sessions on Zoom; each 2-h session focused on different themes (e.g. communication and activities).

Reflections on the co-production process: key ingredients of co-production included ensuring clarity on roles, positive communication and understanding of the family carers’ situation and utilising the varied skills family carers can bring to research and practise.

This is the first family systems-focused programme that the authors know of, that has been co-produced with family carers and solely delivered virtually by trained family carer facilitators from the outset.

The aim of this study was to address the unmet information needs of Malawian informal carers. We report on a three-year project which we co-created with informal carers, medical doctors and NGOs with the view to disseminate health advisory messages.

This study was developed on the principles of co-production. The impact of our health advisory messaging approach was assessed through observations and questionnaire-based surveys for quality, clarity and usefulness.

The messages were disseminated beyond the local support groups and reached a much wider community via word of mouth. The messages also led to short and medium term benefits for informal carers and their loved ones.

Our findings highlight the importance of understanding the contextual conditions of informal caring and that of co-producing interventions with the people these aim to benefit.

Short breaks enable unpaid carers to have a life alongside caring, supporting their physical and emotional well-being. In the UK, short breaks are usually explored during a Carers Assessment. The conversations underpinning these assessments require considerable skill and presently there are few tools to support the exploration of short break needs, desired outcomes and options. Images are used in other conversations to enhance communication, help people consider options and broaden thinking. This study aims to explore whether and how stakeholders thought images might support short break conversations.

To improve access to meaningful short breaks, we need to be guided by the insights of unpaid carers, those they support, practitioners, commissioners and policymakers. We hosted two online involvement events, designed to facilitate the exchange of perspectives and ideas amongst diverse stakeholders. The events explored the acceptability, facilitators and challenges of using images to enhance unpaid carer short break conversations.

The online events were attended by 47 short break stakeholders. These stakeholders saw merit in using images to support short break conversations. They identified several facilitators and challenges to introducing images into practice. The paper highlights how this learning can inform future research and practice development.

Supporting the well-being of older unpaid carers is a pertinent concern as the number of older unpaid carers continues to grow. This paper reports on how stakeholders have informed the earliest stages of practice and research development in a relevant area and provides a model of involvement that others can emulate.

The purpose of this paper is to share the learning concerning how services and the paid carers working in them can support people living with dementia (PLWD) and their unpaid carers to overcome social isolation. This learning comes from the key findings from a Social Return on Investment (SROI) evaluation of a Shared Lives (SL) Day support service, known as TRIO.

SROI is a form of cost-benefit analysis that captures and monetises stakeholder outcomes. The SROI evaluation included a rapid evidence review, an interview study and a questionnaire study. The learning shared is drawn from the interview and questionnaire data that explored the reported outcomes relating to social connection, which included data related to participating in meaningful activities, confidence and independence.

PLWD who accessed the SL Day support service experienced better social connection, a sense of control over their activities (including their social activities) and community presence. A key foundation of these outcomes was the meaningful relationship that developed between the PLWD, their unpaid carer and the paid carer.

This evaluation was a pilot study with a small, albeit representative sample size.

The learning suggests feasible and effective ways for paid carers to support the social connection of PLWD and their unpaid carers with their wider community.

There has been little exploration of how community-based short breaks (like SL Day support) can enhance social connection. The authors drew on a social relational model lens to illustrate how this service type had supported successful outcomes of community and social inclusion for PLWD.