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Aim: The aim of the study was to establish the feasibility of delivering a structured post-diagnosis information and support program to dyads (persons living with dementia or mild cognitive impairment and family carers) in two primary care settings., Design: A two-phase explanatory mixed-method approach guided by the Bowen Feasibility Framework focused on acceptability, implementation, adaptation, integration and efficacy of a five-part programme. In phase 1, the quantitative impact of the programme on the dyadic programme recipients' self-efficacy, quality of life, dyadic relationship and volume of care was measured. In phase 2, inductive content analysis focused on nurse and dyad participant experiences of the programme. Quantitative and qualitative data were reviewed to conclude each element of feasibility., Methods: Four registered nurses working within the participating sites were recruited, trained as programme facilitators and supported to deliver the programme. Eligible dyads attending the respective primary health clinics were invited to participate in the programme and complete surveys at three time points: recruitment, post-programme and 3-month follow-up. Post-programme semi-structured interviews were conducted with dyads and programme facilitators., Results: Twenty-nine dyads completed the program; the majority were spousal dyads. The programme proved acceptable to the dyads with high retention and completion rates. Implementation and integration of the programme into usual practice were attributed to the motivation and capacity of the nurses as programme facilitators. Regarding programme efficacy, most dyads reported they were better prepared for the future and shared the plans they developed during the programme with family members., Conclusion: Implementing a structured information and support programme is feasible, but sustainability requires further adaptation or increased staff resources to maintain programme fidelity. Future research should consider selecting efficacy measures sensitive to the unique needs of people living with dementia and increasing follow-up time to 6 months., Impact: This study established the feasibility of registered nurses delivering a post-diagnosis information and support programme for people living with early-stage dementia or mild cognitive impairment and their informal carers in primary care settings. The motivation and capacity of nurses working as programme facilitators ensured the integration of the programme into usual work, but this was not considered sustainable over time. Family carer dyads reported tangible outcomes and gained confidence in sharing their diagnosis with family and friends and asking for assistance. Findings from this study can be used to provide direction for a clinical trial investigating the effectiveness of the structured information and support programme in the primary care setting., Reporting Method: The authors have adhered to the EQUATOR STROBE Statement., Patient or Public Contribution: A public hospital memory clinic and general medical practice participated in project design, study protocol development and supported implementation., (© 2024 The Authors. Journal of Advanced Nursing published by John Wiley & Sons Ltd.)

Caring for people living with dementia during the novel coronavirus disease 2019 (COVID-19) pandemic significantly impacted the emotional, physical, and social well-being of carers. However, no study has focused on the well-being of Chinese carers of people living with dementia in New Zealand during the pandemic. This study aimed to explore the support needs of Chinese carers of people living with dementia in New Zealand during the COVID-19 pandemic. Semi-structured interviews were conducted by two bilingual and bicultural researchers. Thematic analysis was used to explore the resilience resources for Chinese carers. Twelve Chinese carers were recruited from four community organizations in New Zealand. Four themes were identified: (1) social isolation, (2) emotional loneliness, (3) ambivalent feelings of being a carer, and (4) a variety of unmet needs. The findings of our study provide new insights into the multiple support needs of Chinese carers of people living with dementia during the COVID-19 pandemic. Implications for practice include the establishment of culturally appropriate care support services and the development of tailored resilience-building interventions to address the unmet needs of Chinese carers of people living with dementia.

Objectives: This study compared discussion board involvement between family carers and non-carers in the Understanding Dementia Massive Open Online Course (UD-MOOC)., Methods: A mixed methods observational cohort study of family carers and non-carers was undertaken over the February-April 2020 UD-MOOC. Discussion board engagement was measured as number of posts and replies and examined longitudinally using mixed models. Discussion topics were explored through structural topic models (STM). Subsequently, thematic analysis of STM derived-topic exemplars was conducted to contextualise these discussions., Results: Family carers were ( n  = 2320) found to post ( p  < 0.001) and reply ( p  = 0.029) significantly more often than non-carers ( n  = 2392). Of the 32-STM derived-topics, meaningful activities (mean Δ = 0.007, 95% CrI [0.005-0.100]), personal stories of diagnosis (mean Δ = 0.007, 95% CrI [0.005-0.009]), and family history of dementia (mean Δ = 0.006, 95% CrI [0.004-0.008]) were discussed significantly more frequently by family carers compared to non-carers., Conclusion: These results may reflect underlying motivational differences and circumstantial relevance. Perhaps the greater engagement by family carers is related to a sense of having inadequate relevant offline social resources, where engagement in the UD-MOOC discussion boards may serve as means to share experiences with others.

Objectives: This study aimed to explore carers' experiences of supporting a family member or friend with dementia through COVID-19 and experiences of hope and resilience during this time., Methods: Qualitative longitudinal research was undertaken in the UK, with 13 unpaid carers of people living with dementia who took part in two semi-structured interviews 8 weeks apart between June and October 2020. All transcripts were analysed using reflexive thematic analysis., Findings: Four themes were developed and included: COVID-19 impacted negatively upon everyday living; carer resilience: adapting to COVID-19; analysis of risk: safeguarding the person living with dementia; and thinking about the future with COVID-19., Conclusions: The results illustrated how the sudden changes which occurred during the pandemic negatively impacted on carers and people living with dementia in several ways, including additional responsibilities and taking away hope. The importance of continued formal and informal support for carers and people living with dementia during COVID-19 were highlighted. Formal services, care homes, and organisations need to be supported to implement procedures to ensure a safe environment during future lockdowns or periods of social restrictions. This will enable carers to remain visiting their family members and increase their confidence in accessing services and allowing paid carers to support their family member with dementia. These results have also illustrated the resilience of carers, who adapted to sudden changes which impacted negatively on their wellbeing and the wellbeing of the person living with dementia.

Background: People with dementia sometimes refuse assistance with personal care activities such as washing or dressing. We aimed to investigate the factors associated with refusals of care in advanced dementia., Methods: A cross-sectional study using informant-based measures. Participants were people with advanced dementia and their caregivers (family carers or care-home staff) (n = 260, 130 dyads) in the UK. Mixed effects linear models were used to examine the effects of neuropsychiatric behaviours, ability with activities of daily living, professional input, co-morbidities, psychotropic medications, environment modifications, and caregiver factors including type and training status on refusals of care. The Refusal of Care Informant Scale was used, range 1-13; higher scores indicate more refusal behaviours., Results: Higher independence in activities of daily living was associated with less refusal behaviours (coefficient = -0.11, p < 0.001 [95% confidence interval -0.15, -0.07]). Higher agitation was associated with more refusal behaviours (0.11, p < 0.001 [0.06, 0.15]). No other statistically significant differences were found. There was no demonstrable evidence of differences in number of refusals of care between family and care-home caregivers or between dementia-trained or -untrained caregivers., Conclusions: Results suggest refusals of care have similar prevalence regardless of caregiver type (family or care home) or dementia training status, indicating that current dementia training has no impact on refusals of care or may not be implemented as intended. Improving independence in activities of daily living and reducing agitations may help prevent refusals of care. To establish causality, future research should consider embedding these factors into interventions targeting refusal of care., (© 2022 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.)

People of South Asian (SA) origin have a higher prevalence of dementia compared with the United Kingdom (UK) population as a whole. Little is known about how family carers of SA origin perceive dementia, manage access to dementia services, and how plans and preparations are made for end-of-life for loved ones with dementia. This qualitative study aimed to explore the experiences of carers of people with dementia of SA origin, living in the UK. Through semi-structured interviews, the perspective of caregivers of a person with dementia was explored from point of diagnosis to end-of-life preparation. Sixteen caregivers participated in face-to-face interviews. Four key themes are presented (i) lacking awareness at the start; (ii) living with the challenges of dementia; (iii) preparing for end-of-life; (iv) preferences for burial. Carers described difficulties in making sense of early symptoms and the behaviour changes they observed amongst their relatives with dementia. They described the tensions in trying to follow their religious and cultural identities of honouring the dignity and choices of the person with dementia. This study reports on the perspectives of SA carers of people with dementia, particularly exploring the end-of-life preparation and wishes of people with dementia in the UK. Family carers may benefit from accessing more culturally sensitive support when dementia is diagnosed, including such support when receiving formal day-to-day care. Importantly the findings suggest that planning and preparing to provide end-of-life for people with dementia should recognise and respect family and cultural contexts and religious beliefs., (© 2022 John Wiley & Sons Ltd.)

Introduction: Most studies of the Latin American immigrant experience and care for relatives living with dementia have been in the United States (US). In the United Kingdom (UK), unlike the US, most Latin Americans are first generation immigrants and are a rapidly increasing population. Therefore, we aimed to explore the UK experiences of Latin Americans caring for a relative with dementia., Methods: We purposively recruited UK-based Latin American family carers of people with dementia ensuring maximum diversity. We conducted semi-structured qualitative interviews (in English or Spanish) with 11 family carers, stopping recruiting when we reached thematic saturation. We took an inductive thematic analytic approach., Findings: Four main themes were identified: (1) Family comes first, particularly older people, leading to an obligation to care; (2) dementia as an illness that is accepted and talked about, which is regarded as positive with close networks but not wider society; (3) difficult behaviours are not the responsibility of the person with dementia, who is often conceptualised as a child; and (4) caring expectations lead to incompatibility with formal services, and a reluctance to leave people with dementia alone., Conclusions: Familial obligation is the driver for family carers and acceptance of the illness helped despite adversities. Openness to talk about dementia with close networks was distinctive and helpful, contrasting with wider society, where greater awareness of dementia is needed. Considering the person with dementia as a child did not seem to undermine personhood and enabled maintenance of compassion. The relative with dementia was a priority. There was a lack of culturally and linguistically appropriate services, thus restricting family carers' ability to fulfil other roles, such as parental.

Undertaking co-design with the end users of services has rapidly evolved as the best-practice approach to program design, development and implementation. Increased interest in using participatory co-design in dementia care has drawn attention to the need for evidence-informed methods for facilitating the meaningful involvement of people with dementia and their family carers in co-design activities. The aim of this paper is to describe the co-design framework used in the co-design of a dementia specialist training program for home care workers. The Promoting Independence Through quality dementia Care at Home program is a successful example of co-design methodology used across multiple project stages and with various stakeholder groups, including people living with dementia, family carers, home care workers, managers and researchers. Co-design methods were tailored to each stage, purpose, and stakeholder group, and to facilitate the involvement of people living with dementia. Findings provide unique insights into optimising input from co-design partners, including people living with dementia; the methodology, conditions and requirements for participants to co-design and implement ideas; and perspectives on the enablers and challenges of using co-design in this population. In this paper, we present a comprehensive approach for involving people living with dementia as active and equal contributors in inclusive and meaningful participatory co-design.

Background: Dementia can negatively impact the well-being of people living with dementia and their family carers. Research suggests that music psychosocial interventions are effective, safe alternatives to pharmacological interventions for the promotion of well-being . However, evidence is limited, and research gaps remain. This study explores how a community-based group singing intervention impacts the well-being of people with early-stage dementia and their family carers., Methods: A phenomenological methodological approach was adopted. Participants engaged in a six-week group singing intervention facilitated by a music therapist in a community arts centre. Semi-structured interviews were conducted (n = 7)., Results: Interpretative Phenomenological Analysis revealed four superordinate themes: (1) Social Connection; (2) Happiness and Rejuvenation; (3) Reconnection with the Self; and (4) Supporting the Carer-Cared-for Relationship., Conclusions: Evidence of multidimensional enhancement of well-being, absence of adverse effects, and accessibility of this musical medium support the increased provision of community-based singing groups for these populations.

Background: Most people living with dementia want to remain living in their own homes and are supported to do so by family carers. No interventions have consistently demonstrated improvements to people with dementia's life quality, functioning, or other indices of living as well as possible with dementia. We have co-produced, with health and social care professionals and family carers of people with dementia, a new intervention (NIDUS-family). To our knowledge, NIDUS-family is the first manualised intervention that can be tailored to personal goals of people living with dementia and their families and is delivered by facilitators without clinical training. The intervention utilizes components of behavioural management, carer support, psychoeducation, communication and coping skills training, enablement, and environmental adaptations, with modules selected to address dyads' selected goals. We will evaluate the effect of NIDUS-family and usual care on goal attainment, as measured by Goal Attainment Scaling (GAS) rated by family carers, compared to usual care alone at 12-month follow-up. We will also determine whether NIDUS-family and usual care is more cost-effective than usual care alone over 12 months., Methods: A randomised, two-arm, single-masked, multi-site clinical trial involving 297 people living with dementia-family carer dyads. Dyads will be randomised 2:1 to receive the NIDUS-family intervention with usual care (n = 199) or usual care alone (n = 98). The intervention group will be offered, over 1 year, via 6-8 video call or telephone sessions (or face to face if COVID-19 restrictions allow in the recruitment period) in the initial 6 months, followed by telephone follow-ups every 1-2 months to support implementation, with a trained facilitator., Discussion: Increasing the time lived at home by people living with dementia is likely to benefit lives now and in the future. Our intervention, which we adapted to include remote delivery prior to trial commencement due to the COVID-19 pandemic, aims to address barriers to living as well and as independently as possible that distress people living with dementia, exacerbate family carer(s) stress, negatively affect relationships, lead to safety risks, and frequently precipitate avoidable moves to a care home., Trial Registration: International Standard Randomised Controlled Trials Number ISRCTN11425138 . Registered on 7 October 2019., (© 2021. The Author(s).)

Recent studies have focused on the use of technology to support reminiscence but there remains a dearth of research on the health costs and benefits associated with this intervention. The aim of this study was to estimate costs and quality of life associated with a home based, individual specific reminiscence intervention, facilitated by an iPad app for people living with dementia and their family carers, with a view to informing a future cost-effectiveness analysis. Use of community health and social care services, hospital services, prescribed medication and informal caregiving was assessed using an adapted version of the Client and Socio-Demographic Service Receipt Inventory (CSRI) at baseline and 3-month follow-up. Quality of life was assessed at baseline, 6-week and 3-month follow-up using the EQ5D, DEMQOL and DEMQOL proxy instruments. Results showed that average health and social care costs were £29,728 per person at baseline (T0) and £33,436 after 3 months (T2). Higher T2 costs were largely accounted for by higher informal caregiving costs. There was an overall increase in health-related quality of life over the duration of the intervention, although there were notable differences in index scores generated by the EQ5D (0.649, 0.652 and 0.719) and DEMQOL instruments (0.845, 0.968 and 0.901). The study concluded that a full cost-effectiveness analysis could incorporate a similar range of cost-categories with minor amendments to the CSRI to improve the accuracy of cost estimation. Furthermore, a larger sample size, randomisation and longer follow-up period are required to allow potential effects of the intervention to be realised and differences between intervention and control groups to be accurately detected.

Background: Despite a growing elderly South Asian population, little is known about the experience of diagnosis and care for those living with dementia. There have been a number of individual qualitative studies exploring the experiences of South Asian people living with dementia and their carers across different contexts. There has also been a growing interest in synthesizing qualitative research to systematically integrate qualitative evidence from multiple studies to tell us more about a topic at a more abstract level than single studies alone. The aim of this qualitative synthesis was to clearly identify the gaps in the literature and produce new insights regarding the knowledge and understanding of the attitudes, perceptions, and beliefs of the South Asian community about dementia., Methods: Following a systematic search of the literature, included qualitative studies were assessed by two independent reviewers for methodological quality. Data were extracted and pooled using the Joanna Briggs Institute Qualitative Assessment and Review Instrument (QARI). Findings were synthesized using the Joanna Briggs Institute approach to qualitative synthesis by meta-aggregation., Results: Seventeen papers were critically appraised, with 13 meeting the inclusion criteria. Participants were mostly of South Asians of Indian background; followed by Pakistani with a few Sri Lankans. Missing South Asian countries from the current evidence base included those from Bangladesh, Bhutan, Maldives, and Nepal. Three meta-synthesis themes emerged from the analysis: (1) a poor awareness and understanding of dementia, (2) the experience of caregiving, and (3) the attitudes toward dementia care provision., Conclusions: A consistent message from this qualitative synthesis was the limited knowledge and understanding of dementia amongst the South Asians. Whilst symptoms of dementia such as 'memory loss' were believed to be a part of a normal ageing process, some South Asian carers viewed dementia as demons or God's punishments. Most studies reported that many South Asians were explicit in associating stigmas with dementia.

The majority of people living with dementia reside in the community and are often reliant on the support of informal carers to do so. Family carers face many challenges in supporting the person with dementia to remain at home, and short-term respite care is a valued service that offers a temporary break from the role. Respite cottages provide short-term care in a residential home-like setting with a limited number of clients and is a more flexible approach to accessing the service. Disproportionate use of cottage respite in Australia suggests this model is preferred over traditional respite within residential aged care facility (RACF) settings, yet limited research exists to compare these models. This study sought to understand the perceptions of carers who had used cottage respite in comparison to other models, and explore the contribution of cottage respite for supporting carers to continue in their role and maintain their care recipient (CR) living at home. Semi-structured interviews were conducted with 126 family carers who had used one of two New South Wales-based respite cottages within a 2-year period; 67 of whom had also used RACF respite. Thematic analysis revealed four main themes around the benefits of cottage respite: (a) an effective essential service, (b) flexibility, (c) familiarity and (d) appropriateness, especially for early stage or younger onset dementia. Carers indicated that the more homely, familiar and intimate cottage model of respite care was preferential to that of the larger, institutional-style RACF respite setting. Carers credited the cottage model of respite service with delaying their need for permanent residential placement by over 12 months. The cottage respite model provides an important avenue to supporting the individual needs of dementia dyads, with potential to delay permanent placement, and should be offered more broadly to provide people with more choice about their care., (© 2019 The Authors. Health and Social Care in the Community published by John Wiley & Sons Ltd.)

Background: The START (STrAtegies for RelaTives) intervention reduced depressive and anxiety symptoms of family carers of relatives with dementia at home over 2 years and was cost-effective., Aims: To assess the clinical effectiveness over 6 years and the impact on costs and care home admission., Method: We conducted a randomised, parallel group, superiority trial recruiting from 4 November 2009 to 8 June 2011 with 6-year follow-up (trial registration: ISCTRN 70017938). A total of 260 self-identified family carers of people with dementia were randomised 2:1 to START, an eight-session manual-based coping intervention delivered by supervised psychology graduates, or to treatment as usual (TAU). The primary outcome was affective symptoms (Hospital Anxiety and Depression Scale, total score (HADS-T)). Secondary outcomes included patient and carer service costs and care home admission., Results: In total, 222 (85.4%) of 173 carers randomised to START and 87 to TAU were included in the 6-year clinical efficacy analysis. Over 72 months, compared with TAU, the intervention group had improved scores on HADS-T (adjusted mean difference -2.00 points, 95% CI -3.38 to -0.63). Patient-related costs (START versus TAU, respectively: median £5759 v. £16 964 in the final year; P = 0.07) and carer-related costs (median £377 v. £274 in the final year) were not significantly different between groups nor were group differences in time until care home (intensity ratio START:TAU was 0.88, 95% CI 0.58-1.35)., Conclusions: START is clinically effective and this effect lasts for 6 years without increasing costs. This is the first intervention with such a long-term clinical and possible economic benefit and has potential to make a difference to individual carers., Declarations of Interest: G.L., Z.W. and C.C. are supported by the UCLH National Institute for Health Research (NIHR) Biomedical Research Centre. G.L. and P.R. were in part supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) North Thames at Bart's Health NHS Trust. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. Z.W. reports during the conduct of the study; personal fees from GE Healthcare, grants from GE Healthcare, grants from Lundbeck, other from GE Healthcare, outside the submitted work.

Rationale, Aims and Objectives: Although Bangladeshis are three times more likely to be carers than White British, Bangladeshi family carers are the most deprived, neglected, and effectively a hidden group in the United Kingdom. 1 There is a paucity of research within the Bangladeshi community that is capable of explaining and predicting the experiences and concerns of Bangladeshi family carers providing care for their relatives with dementia. The purpose of this study is to explore the perspectives of Bangladeshi family carers' knowledge and day-to-day experiences living in England., Methods: This is a qualitative study involving semistructured face-to-face interviews with six Bangladeshi family carers living in London and Portsmouth. Interviews were recorded with the consent and transcribed verbatim. Data were managed by using NVivo software, and thematic analysis was performed., Results: This paper explores that most carers have a lack of knowledge and awareness of the symptoms of dementia. The results of this study are in contrast to previous studies, where South Asian carers perceived dementia as being possessed by evil spirits or God's punishment for previous life's sins; this study reveals that Bangladeshi family carers believed dementia was a medical condition. Unlike earlier South Asian studies, however, all family carers in this study also believed that there was no stigma attached to dementia., Conclusions: Further research is warranted to investigate the religious beliefs, familism, and interpersonal motives as theoretical perspectives to explain how Bangladeshi family carers negotiate and construct their caregiving roles for their relatives with dementia., (© 2019 John Wiley & Sons, Ltd.)

Introduction: Worldwide, most people with dementia live at home and are cared for by informal carers. During the dementia care trajectory, creating and maintaining a stable care situation is a guiding principle of informal carers and a desirable outcome of contemporary healthcare policies. However, though there is an extensive body of research focusing on the course of dementia care trajectories, it remains unclear how stability of home-based care arrangements is constituted and what are the essential factors that influence this stability. This paper outlines a protocol of a systematic review that aims to address these gaps in knowledge., Methods and Analysis: To theorise the complex phenomenon of stability of home-based care arrangements for people with dementia, we will conduct a meta-study. Meta-studies include three analytical components (meta-data analysis, meta-method and meta-theory) that are combined and finally culminate in an integrative knowledge synthesis. Originally, meta-study was designed to include qualitative studies only. To capture relevant contributions to our target phenomenon from all types of evidence, we will extend the original methodology and apply it to studies with qualitative, quantitative and mixed-methods designs and to (systematic) reviews. Eligible studies will be identified by systematic database searches (PubMed, CINAHL and PsycINFO), backward/forward citation tracking, snowballing and theoretical sampling. All identified studies will be screened against predefined inclusion criteria. The main analytical approach for all analyses is thematic synthesis. The meta-study will generate a more comprehensive understanding of dementia care trajectories and will be used to identify research gaps, develop future research questions and define relevant outcomes., Dissemination: The findings of the meta-study will be published in a series of articles in peer-reviewed scientific journals and will be presented at national and international scientific conferences., Prospero Registration Number: CRD42016041727., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2018. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: The carer-delivered individual cognitive stimulation therapy (iCST) was developed to improve cognition and quality of life of people with dementia. This study aims to explore people with dementia and family carers' concepts of mental stimulation and experiences of participating in the iCST intervention., Methods: A sub-sample of 23 dyads of people with dementia and their family carers who completed the iCST intervention took part in semi-structured in-depth interviews. Data were analysed using framework analysis., Results: Three main themes emerged, 'Concepts of mental stimulation', 'Experiencing changes in everyday life as a result of participating in iCST' and 'Carer adherence to the intervention' along with 10 sub-themes. The overall experience of participating in iCST was described as having opportunities to engage in enjoyable mentally stimulating activities, motivation to stay active and bringing people with dementia and their carers 'together'. Family carers mentioned that finding time to do the sessions and their relatives being reluctant to engage in the activities could hinder their participation in the intervention., Conclusions: People with dementia and their family carers found iCST stimulating and enjoyable, but many had difficulty delivering all the sessions as planned. Family carers suggested that providing extra support by involving other people in delivering the intervention may help to improve adherence to the intervention. iCST may be a useful tool to encourage people with dementia and their carers to communicate. Copyright © 2017 John Wiley & Sons, Ltd., (Copyright © 2017 John Wiley & Sons, Ltd.)

Hospital admission of a person with dementia can have a significant impact on the family carer, who temporarily relinquishes caring to health professionals. A descriptive qualitative design using in-depth interviews with a conversational approach was used to elicit data. Adjusting to the change in the carer's role can be challenging and result in feelings of helplessness, loneliness, loss of control and being undervalued. Family support can assist with the transition but family conflict increases anxiety. Good communication between clinicians and the carer is vital. The carer should be included in decision-making as the 'expert' in the care of the person with dementia. This article discusses findings of a larger study specifically related to the emotional support required for the carers of people with dementia, who are admitted to hospital. The carer and the patient must be considered as a dyad in relation to discharge planning., (© The Author(s) 2014.)

Research shows that people with late-onset dementia and their relatives can benefit from using assistive technology (AT). Few researchers have investigated the use and utility of AT in everyday life for younger people with dementia (YPD) and their family carers. The aim of this study is to explore what characterised the implementation process when the AT was experienced as beneficial to the YPD and the family carer in their daily life. The qualitative longitudinal study followed 12 younger people (i.e. those under 65 years of age), who had recently been diagnosed with dementia and 14 of their family carers. In-depth interviews and observations during the process were conducted at the beginning, and were repeated every 3rd month for up to 12 months. The data were analysed, and the participants' experiences further discussed on the basis of embodied, social- and everyday life-situated approaches, in order to provide a deeper understanding of the interactive processes involved in the trajectory. Five elements in the process were identified as important for the experience of usefulness and successful incorporation of AT. The AT had to: (1) be valuable by addressing practical, emotional, and relational challenges; (2) fit well into, or be a better solution for, habitual practice and established strategies; (3) generate positive emotions, and become a reliable and trustworthy tool; (4) be user-friendly, adaptable, and manageable; and (5) interest and engage the family carer. The study demonstrated the importance of understanding the use and utility of AT on the basis of embodied and social participation in daily life. The family carers played a significant role in whether or not, and in which ways, AT was absorbed into the everyday life practice of YPD., (© The Author(s) 2014.)

Background/Objectives: The importance of family carer dementia education is highlighted in research, practice guidance, and policy. Less attention is paid to how facilitators learn and prepare for their role. This research aimed to explore and describe facilitator learning experiences within a bespoke Scottish Carers' Academy designed around a theory-guided approach called Care Empathia. A healthcare and university partnership ensured integration with services and the fusion of dementia higher education know-how with clinical practice expertise. Methods: Nineteen facilitator questionnaires were completed from two Carer Academy hubs; thirteen participated in online focus groups. Results: The questionnaire findings highlighted the learning gained from being a facilitator, observing expert facilitators in action, and listening to the testimonies of family carers. The framework analysis of the focus group data identified six themes, including safe learning approaches, the art of facilitation, emotional work, team learning, and leadership. These findings highlight the importance of facilitator preparation and the advantages of co-delivery models that combine clinical and practice education expertise. Conclusion: Facilitators need to understand how to walk the talk of theory-guided educational models, be open to reciprocity in learning, and be prepared for the emotional work of delivering trauma-informed practical dementia care education to family carers. [ABSTRACT FROM AUTHOR]

Caring for a person with dementia can negatively impact the physical, mental, and social wellbeing of an informal carer. Providing complex and challenging care often results in carer burden, stress, and distress, which can continue even when the care recipient transitions into an aged care facility. This case study aims to demonstrate that optimising carer support, knowledge, skill acquisition, and promotion of wellbeing benefits carers and those they care for across contexts. It provides a weekly account of an informal Australian carer's experience with the STrAtegies for RelaTives (START) manualised intervention program. The study used reliable change indices, standardised measures, and carer surveys to provide insights into the carer's experience of the program and outcomes during and after the therapy. The results showed reliable and clinically significant change, demonstrating an improvement in all measures. The carer's mood symptoms and their perceived burden of care decreased. The carer also reported decreased dementia symptoms in their care recipient. Both the carer and the care recipient experienced increased quality of life. These findings are consistent with recent literature on the feasibility of the START program and are aligned with the National Dementia Plan. [ABSTRACT FROM AUTHOR]

Background: Visiting restrictions in care homes in England and many comparable countries during the Covid-19 pandemic were extensive and prolonged. We examined how care home managers experienced, understood and responded to the national care home visiting guidance in England in developing their visiting policies. Methods: A diverse sample of 121 care home managers across England, recruited through varied sources including the NIHR ENRICH network of care homes, completed a 10-item qualitative survey. Follow-up, in-depth qualitative interviews were conducted with a purposive sub-sample of 40 managers. Data were analysed thematically using Framework, a theoretically and methodologically flexible tool for data analysis in multiple researcher teams. Findings: Some viewed the national guidance positively; as supporting the restrictive measures they felt necessary to protect residents and staff from infection, or as setting a broad policy framework while allowing local discretion. More commonly, however, managers experienced challenges. These included the guidance being issued late; the initial document and frequent, media-led updates not being user-friendly; important gaps, particularly in relation to dementia and the risks and harms associated with restrictions; guidance being unhelpfully open to interpretation while restrictive interpretations by regulators limited apparent scope for discretion; fragmented systems of local governance and poor central-local coordination; inconsistent access and quality of support from local regulators wider sources of information, advice and support that, while often valued, were experienced as uncoordinated, duplicative and sometimes confusing; and insufficient account taken of workforce challenges. Conclusions: Underlying many of the challenges experienced were structural issues, for which there have been longstanding calls for investment and strategic reform. For increasing sector resilience, these should be urgently addressed. Future guidance would also be significantly strengthened by gathering better data, supporting well-facilitated peer exchange, engaging the sector more fully and dynamically in policy-making and learning from care home managers' and staff's experiences, particularly of assessing, managing and mitigating the wider risks and harms associated with visiting restrictions. [ABSTRACT FROM AUTHOR]

IntroductionThis study investigates family carers experiences of inpatient mental health care for people with dementia. A mental health inpatient admission for a person with dementia is usually considered when a person is distressed and this distress leads to behaviours that are assessed to be risky for the person or others.MethodsParticipants included seven family carers whose relative with dementia had been cared for within a mental health ward in the United Kingdom UK within the last 5 years. Interviews were used to explore the circumstances that led to the admission, expectations of mental health care, and perceptions of care during the admission and support received by family carers.ResultsParticipants described their distress at the time of admission and how the process of admission sometimes added to their distress. Carers often felt excluded from their relatives care in hospital and many felt a loss of their rights. Participants felt that the mental health admission had a negative impact on their relative with dementia. Mental health law and legislation was difficult to navigate and carers were concerned about how much knowledge and understanding of dementia staff have.DiscussionFindings suggest that family carers may benefit from targeted support during their relatives admission. Mental health wards could do more to recognise the expertise in care and knowledge of the person with dementia of family carers and involve them in planning care. More research is needed to explore the experiences and outcomes of people with dementia during such admissions.

Objective: This narrative study explores how family members readjust to young onset dementia (YOD) being a part of their everyday life during the first four years of their family member's illness. Background: Young onset dementia affects family relationships and challenges their life situation from the onset of the illness. It is therefore important to recognise and understand the family members' supportive and resisting issues as well as their coping styles. Method: The data was collected in Finland by conducting interviews with 16 family members of people with YOD and these were repeated once a year for four years (2019 to 2022). The actant model was used to carry out the analysis. Results: Narrating the situation helps family members reconstruct their own story of their changed situation. Family members adjust their life situation at the beginning of the YOD diagnosis by retaining their daily continuity, coping, and by finding meanings. These require a recognition and an acceptance of the changes that YOD creates in relationships and daily living and may lead to a storyline that is broken, adaptive or alternative. Conclusion: When family members engage in storytelling, this can result in an increased awareness of their situation and lead them to identify opportunities and problems and solve them. This also leads to their readjustment to dementia as a part of their own personal narrative. [ABSTRACT FROM AUTHOR]

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Objectives: Some spouses providing care for a partner with dementia experience continuity in the relationship: Despite the changes that have occurred, the person with dementia and the relationship are felt to be essentially the same as they were before the dementia. Others experience discontinuity: The person and the relationship feel very different. Previous qualitative research has suggested that continuity may be linked with the delivery of more person-centred care. Using a mixed-methods approach, the present study aimed to provide a more robust test of this claim. Method: Twenty-six spousal carers completed the Birmingham Relationship Continuity Measure and the Caregiver Hassles Scale, and took part in an interview about their response to challenging care needs. Attributions about the causes of those needs were extracted from the interviews and coded. Codes referred either to dementia as a cause, or to a range of other causes that reflected a more person-centred focus. A measure of person-centred care was obtained by calculating the percentage of the total number of attributions that fell into these more person-centred categories. Results: Consistent with the hypothesis that continuity and person-centred care are linked, those who reported greater continuity reported a significantly higher percentage of person-centred attributions. Conclusions: Person-centred care is important for the well-being of those giving and those receiving the care. Little is currently known about how to support families to be more person-centred. The possibility of supporting person-centred care through enhancing the experience of continuity merits investigation. [ABSTRACT FROM AUTHOR]

Background: Improving quality of life (QOL) for people with dementia is a priority. In care homes, we often rely on proxy ratings from staff and family but we do not know if, or how, they differ in care homes. Methods: We compared 1056 pairs of staff and family DEMQOL-Proxy ratings from 86 care homes across England. We explored factors associated with ratings quantitatively using multilevel modelling and, qualitatively, through thematic analysis of 12 staff and 12 relative interviews. Results: Staff and family ratings were weakly correlated (ρ s = 0.35). Median staff scores were higher than family's (104 v. 101; p < 0.001). Family were more likely than staff to rate resident QOL as 'Poor' (χ2 = 55.91, p < 0.001). Staff and family rated QOL higher when residents had fewer neuropsychiatric symptoms and severe dementia. Staff rated QOL higher in homes with lower staff:resident ratios and when staff were native English speakers. Family rated QOL higher when the resident had spent longer living in the care home and was a native English. Spouses rated residents' QOL higher than other relatives. Qualitative results suggest differences arise because staff felt good care provided high QOL but families compared the present to the past. Family judgements centre on loss and are complicated by decisions about care home placement and their understandings of dementia. Conclusion: Proxy reports differ systematically between staff and family. Reports are influenced by the rater:staff and family may conceptualise QOL differently. [ABSTRACT FROM AUTHOR]

Purpose: We aimed to address gaps identified in the evidence base and instruments available to measure the quality of life (QOL) of family carers of people with dementia, and develop a new brief, reliable, condition-specific instrument.Methods: We generated measurable domains and indicators of carer QOL from systematic literature reviews and qualitative interviews with 32 family carers and 9 support staff, and two focus groups with 6 carers and 5 staff. Statements with five tailored response options, presenting variation on the QOL continuum, were piloted (n = 25), pre-tested (n = 122) and field-tested (n = 300) in individual interviews with family carers from North London and Sussex. The best 30 questions formed the C-DEMQOL questionnaire, which was evaluated for usability, face and construct validity, reliability and convergent/discriminant validity using a range of validation measures.Results: C-DEMQOL was received positively by the carers. Factor analysis confirmed that C-DEMQOL sum scores are reliable in measuring overall QOL (ω = 0.97) and its five subdomains: 'meeting personal needs' (ω = 0.95); 'carer wellbeing' (ω = 0.91); 'carer-patient relationship' (ω = 0.82); 'confidence in the future' (ω = 0.90) and 'feeling supported' (ω = 0.85). The overall QOL and domain scores show the expected pattern of convergent and discriminant relationships with established measures of carer mental health, activities and dementia severity and symptoms.Conclusions: The robust psychometric properties support the use of C-DEMQOL in evaluation of overall and domain-specific carer QOL; replications in independent samples and studies of responsiveness would be of value. [ABSTRACT FROM AUTHOR]

People with early-onset dementia (EOD) and their family carers remain an overlooked population within the policy and practice priorities of community health care. No standard provision of care or support currently exists for those with EOD and the family carer. Yet family members provide the majority of the full-time care required for this progressive, irreversible illness. The aim of this research was to explore the impact of care-giving on family members caring for a relative with EOD. The care-giving experiences identified in this study emphasise the need for improvement in the provision of community and specialised services for people with EOD and family carers. The key themes of this qualitative study were diagnostic problems, impact of caregiving, relationship change and lack of resources. These findings provide key directives for improving community practice, services and support for people with EOD and their family carers. [ABSTRACT FROM AUTHOR]

Accessible summary • The significant role of the family care giver supporting a loved one experiencing dementia is becoming increasingly recognized by modern health care service providers. However, very little research activity has been directed towards studying how such important care providers develop meaningful and healthy relationships with the paid professionals supporting them in this important role. • This grounded theory study has strived to examine this important relationship in some detail with a clear intention of creating a theoretical explanation (model) that will more explicitly explain how this relationship might be developed and strengthened for the benefit of both the care recipient and their family care provider. • The findings from the study demonstrate how this relationship may be initiated managed and strengthened. How, under certain circumstances, this relationship may be enhanced or alternatively restricted; and how either trajectory may impact upon both the relationship between carer and key worker and consequently how the quality of this relationship may impact upon the care environment itself. • The substantive theory derived from this research has important implication for both health care professionals working within the field of dementia care as well as for those individuals are providing care and support to a close relative or friend living with dementia, especially at the early stage of their caring experience. Additionally this study's findings have important implications for not only those providing care, but also for health care management, researchers and those providing training and education at all levels within this sector. This study focused on the relationship that develops between professional key workers and dementia carers operating within the home environment. Some research has been directed towards those caring for a relative/friend with dementia and how their role might be made less burdensome; however, the relationship that exists and develops between a carer and their key professional is limited. The aim of this study was to examine this relationship in greater detail and generate a theoretical explanation of this psychosocial process. The grounded theory methodology has particular applicability for this aim. Carer/key worker dyads within Lanarkshire were interviewed in tandem and all interviews recorded. The transcripts were then analysed and initial data categories identified progressing through to the final core category that explained all subordinate data. This study provided a clearer insight into the interpersonal processes associated with this relationship and how it may more effectively be initiated, managed and strengthened. It created the potential to produce a more positive care outcome forthe person with dementia. It also has implications for future research into similar aspects of care giving, particularly for health care education and management, as well as carer advisory services. [ABSTRACT FROM AUTHOR]