This systematic literature review examines the evidence base on the effectiveness of online programmes on the mental health and well-being of family carers of people with intellectual disabilities. Databases (ERIC, Medline, PsycINFO and CINAHL) were searched for intervention studies that considered online interventions for family carers of people with intellectual disabilities. Data were extracted using standardised data extraction tools. Bias was assessed using the Cochrane risk of bias tool for randomised trials (RoB 2). Screening, extraction and assessment of bias were completed independently by two members of the research team. Given the low number of included studies and different outcomes assessed within them, it was not possible to conduct a meta-analysis; therefore, data are presented narratively. Two studies met the criteria to be included in the review. Both studies utilised a feasibility randomised controlled trial methodology. One study found a significant decrease in parental stress, while the other found a significant increase in psychological well-being. Caution must be taken in drawing firm conclusions, given the small sample sizes and low retention rates in both studies. Online programmes seem to offer potential benefits to family carers of people with intellectual disabilities. However, further investigation is needed to examine these programmes, adopting a collaborative approach with family carers.

BACKGROUND: India has a significant prevalence of people with intellectual disabilities. Despite their higher prevalence, they receive poor support. Therefore, this review aims to explore the experiences of family carers in providing care for children with intellectual disabilities in India.
METHODS: A qualitative evidence synthesis was undertaken, searching databases such as MEDLINE, CINAHL, Web of Science, and PsycInfo up to October 2023. Grey literature was also searched for unpublished studies, with two reviewers assessing methodological quality. Eleven eligible studies, mostly qualitative in design, were included in the review. The data synthesis followed a thematic approach.
RESULTS: The synthesis found five themes representing family carers\' experiences and perspectives. These were \'resilience and acceptance\', \'parental response\', \'care dynamic\', \'preparing for transition to adulthood\' and \'parental advocacy\'.
CONCLUSIONS: Family carers hold diverse views, while almost all consider providing care complex and challenging, with few positive experiences.

Family caregivers are vital to enabling people with dementia to live longer in their own homes. For these caregivers, chatting with clinicians-being listened to empathetically and receiving reassurance-can be seen as not incidental but important to supporting them. This paper considers and identifies the significance of this relational work for family carers by re-examining data originally collected to document caregivers\' perspectives on quality in crisis response teams. This reveals that chatting, for family caregivers, comprises three related features: (i) that family caregivers by responding to a person\'s changing and sometimes challenging needs and behaviors inhabit a precarious equilibrium; (ii) that caregivers greatly appreciate \'chatting\' with visiting clinicians; and (iii) that while caregivers appreciate these chats, they can be highly critical of the institutionalized character of a crisis response team\'s involvement with them.

BACKGROUND: People living with, or caring for someone with, rare forms of dementia can encounter issues while obtaining a diagnosis and trying to access appropriate support. This can affect their wellbeing, quality of life, social relationships and employment status. This study makes use of an arts-based narrative approach to explore individual accounts of these experiences whilst also exploring how, in telling their stories, those affected by rare forms of dementia might invoke, and situate their stories in relation to, broader cultural narratives around dementia and illness.
METHODS: Semi-structured interviews were conducted via video-conferencing software with participants (N = 27), living with, or caring for someone with, a rare forms of dementia. Participants used line drawings to depict their journey from initial symptoms to the present day, followed by prompts to verbally narrate their experiences. All interview transcripts and line drawings were subjected to narrative analysis. Four sets of transcripts and drawings were then subjected to more in-depth analysis.
RESULTS: Analysis shed light on the struggles encountered by both care-partners and people with a diagnosis, while navigating a health and social care system that does not always understand their needs. This often led to individuals feeling isolated and unsupported. Accounts also depicted challenges to identity brought on by the process. The moment of diagnosis was also drawn in a complicated light. Individuals found comfort in gaining understanding, but felt fear at recognising upcoming challenges. Participants situated their own accounts against mainstream cultural narratives around what good support for cognitive impairment and dementia might look like, whilst also demonstrating the influential role they took on in pursuing the right care.
CONCLUSIONS: The use of line drawing, alongside narrative interviews, allowed participants to tell complicated, sometimes anachronistic, stories about difficult experiences, whilst also reflecting on, and attaching meaning to, them. These stories highlighted pressing gaps in healthcare services and shone a light on the various pieces of collective action individuals were engaged in in order to improve them. Finally, in modelling some elements of the participants\' service provision which were working, the narratives pointed to future directions services might move in.

People with dementia and their family carers may be subject to a number of different risks; these risks may overlap with, and impact on one another. Due to changes in capacity that come with dementia, people with the diagnosis may be overly cautious about decisions made relating to risk made on their behalf, and this may have a negative impact on their wellbeing and quality of life. This article aims to educate community nurses on the risks they need to be aware of when working with families affected by dementia, and presents a risk enablement framework as a way of assessing and managing risk in a person-centred way.

This paper provides and overview of the community support services that may be available for people with dementia and their family carers. The authors introduce dementia, including the impact of the diagnosis on both the person with dementia and the wider family. Using a case study approach, the authors describe the support available, spanning health and social care and third sector organisations. They discuss how this support can enable people with dementia and their carers to maintain wellbeing and cope with the impact of dementia. This article will be of interest to community nurses, and health and social care professionals more generally, who may encounter families affected by dementia in community settings. Having a good knowledge of the support available and how to access it will allow community nurses to capitalise on the health promotion opportunities presented to them, when they come into contact with families affected by dementia in the course of their day-to-day practice.

BACKGROUND: Decisions surrounding the permanent residential care placement of people living with dementia can be stressful and distressing; however, providing access to targeted information and support prior to placement may help carers better cope. This mixed methods study aimed to test the feasibility, acceptability, and potential benefits of providing a tailored, individual counselling program (the Residential Care Transition Module), delivered via videoconferencing, to Australian family carers of a relative with dementia during the transition to permanent residential care.
METHODS: A total of 18 family carers were randomly allocated to receive either the counselling intervention (six sessions delivered over 12 weeks) or a check-in call, delivered by a trained Transition Counsellor. Both groups received help-sheets about residential care, coping with placement, and managing feelings. Carers completed online surveys about stress, guilt, anxiety, depression, grief, and support for caring at baseline and four months post-baseline. Carers were also invited to participate in semi-structured exit interviews, conducted after follow-up surveys were completed. Process data relating to recruitment, retention, intervention dose and delivery were collected via logs. Quantitative data were analysed using descriptive statistics and repeated measures ANOVA. Qualitative data, relating to feasibility, acceptability, and perceived benefits of the program, were analysed using the \'framework\' approach developed by the Medical Research Council to inform the process evaluation of complex interventions.
RESULTS: Qualitative findings indicated that delivery of the counselling program during the transition period was deemed by participants to be feasible and acceptable. Delivery via videoconferencing was deemed convenient and acceptable, with few technical issues. The skills and knowledge of the Transition Counsellor were perceived to be important mechanisms of impact. Though not statistically significant, promising quantitative findings were identified in terms of reduced carer stress and guilt and improved support for caring.
CONCLUSIONS: Delivery of a tailored counselling program via videoconferencing to family carers of people living with dementia during the transition to residential care was feasible and acceptable. The program has the potential to improve transitional support to family carers.
BACKGROUND: This study was registered in the Australian New Zealand Clinical Trials Registry: ACTRN12621001462875.

BACKGROUND: Carers often assume key roles in cancer care. However, many carers report feeling disempowered and ill-equipped to support patients. Our group published evidence-based guidelines (the Triadic Oncology [TRIO] Guidelines) to improve oncology clinician engagement with carers and the management of challenging situations involving carers.
OBJECTIVE: To facilitate implementation of the TRIO Guidelines in clinical practice, we aimed to develop, iteratively refine, and conduct user testing of a suite of evidence-based and interactive web-based education modules for oncology clinicians (e-Triadic Oncology [eTRIO]), patients with cancer, and carers (eTRIO for Patients and Carers [eTRIO-pc]). These were designed to improve carer involvement, communication, and shared decision-making in the cancer management setting.
METHODS: The eTRIO education modules were based on extensive research, including systematic reviews, qualitative interviews, and consultation analyses. Guided by the person-based approach, module content and design were reviewed by an expert advisory group comprising academic and clinical experts (n=13) and consumers (n=5); content and design were continuously and iteratively refined. User experience testing (including \"think-aloud\" interviews and administration of the System Usability Scale [SUS]) of the modules was completed by additional clinicians (n=5), patients (n=3), and carers (n=3).
RESULTS: The final clinician module comprises 14 sections, requires approximately 1.5 to 2 hours to complete, and covers topics such as carer-inclusive communication and practices; supporting carer needs; and managing carer dominance, anger, and conflicting patient-carer wishes. The usability of the module was rated by 5 clinicians, with a mean SUS score of 75 (SD 5.3), which is interpreted as good. Clinicians often desired information in a concise format, divided into small \"snackable\" sections that could be easily recommenced if they were interrupted. The carer module features 11 sections; requires approximately 1.5 hours to complete; and includes topics such as the importance of carers, carer roles during consultations, and advocating for the patient. The patient module is an adaptation of the relevant carer module sections, comprising 7 sections and requiring 1 hour to complete. The average SUS score as rated by 6 patients and carers was 78 (SD 16.2), which is interpreted as good. Interactive activities, clinical vignette videos, and reflective learning exercises are incorporated into all modules. Patient and carer consumer advisers advocated for empathetic content and tone throughout their modules, with an easy-to-read and navigable module interface.
CONCLUSIONS: The eTRIO suite of modules were rigorously developed using a person-based design methodology to meet the unique information needs and learning requirements of clinicians, patients, and carers, with the goal of improving effective and supportive carer involvement in cancer consultations and cancer care.

OBJECTIVE: Many oncology health professionals (HPs) report communicating with carers as complex; and receive limited carer-relevant training. We developed an online HP education program for supporting and managing carer involvement (eTRIO). We aimed to assess whether HPs\' self-efficacy in carer communication, knowledge, and decision-making preferences improve following eTRIO. Satisfaction and implementation potential were assessed.
METHODS: This type 1 hybrid effectiveness-implementation study used a pre-post single arm intervention design. HPs completed baseline measures, the eTRIO online module, and measures at 1- and 12-weeks post-intervention. Measures included: self-efficacy in carer communication (13-items), applied knowledge (7-items), preference for carer involvement in decisions (1-item). Fifteen of participants completed feedback interviews which underwent thematic analysis. User analytics were collected and analysed.
RESULTS: Fifty-six HPs completed baseline measures, 42 completed post- and follow-up measures. At baseline mean self-efficacy score was 88. HPs showed a statistically significant increase in self-efficacy post-intervention (mean = 105.8, CI [12.99, 20.47]), maintained at 12-weeks (mean = 101.1, CI [8.00, 15.72]). There were no changes in knowledge or decision-making preferences. Program engagement and satisfaction were high, 86.7% participants rated eTRIO as very/extremely helpful.
CONCLUSIONS: eTRIO provided HPs with confidence to effectively engage with carers and manage complex situations such as family dominance. These gains are noteworthy, as conflict with families/carers contributes to HP burnout.

BACKGROUND: A body of research from around the world has reported positive effects of bilingualism on cognitive ageing and dementia. However, little is known about whether foreign language learning could be applied as an intervention for people already living with dementia. Yet, before it is possible to determine the efficacy of language courses as an intervention for people living with dementia (PLWD), it is necessary to establish whether such an intervention is feasible. Our study explored this possibility.
METHODS: We conducted an exploratory study to examine the feasibility and tolerability of 2-week Italian beginner courses for PLWD in early stages and their family carers in two Scottish Dementia Resource Centres (DRCs). The courses were delivered by trained tutors from Lingo Flamingo, a social enterprise specialising in language teaching for older learners and learners with dementia. Twelve PLWD and seven carers participated in the study. Focus groups preceded and followed the courses. Additional post-course open interviews with the DRC managers were conducted, with a follow-up via telephone approximately one year later.
RESULTS: Qualitative content analysis resulted in 12 themes, 5 reflected in the interview schedule and 7 arising from the focus groups and interviews. Overall, the courses were perceived positively by PLWD, carers, and DRC managers, although a few logistically and linguistically challenging aspects were also mentioned. The courses were found to positively impact both the individual by increasing self-esteem and producing a sense of accomplishment as well as the group by creating a sense of community. Notably, no adverse effects (in particular no confusion or frustration) were reported.
CONCLUSIONS: The positive outcomes of our study open a novel avenue for future research to explore foreign language training in dementia as an intervention and its implications.