Yes / Young Onset Dementia (YOD), defined by first symptoms of cognitive or behavioral decline occurring before the age of 65 years, is relatively rare compared to dementia of later onset, but it is associated with diagnostic difficulty and heavy burden on affected individuals and their informal carers. Existing health and social care structures rarely meet the needs of YOD patients. Internet-based interventions are a novel format of delivering health-related education, counseling and support to this vulnerable yet underserved group. Methods: The RHAPSODY (Research to Assess Policies and Strategies for Dementia in the Young) project is a European initiative to improve care for people with YOD by providing an internet-based information and skill-building program for family carers. The e-learning program focuses on managing problem behaviors, dealing with role change, obtaining support and looking after oneself. It will be evaluated in a pilot study in three countries using a randomized unblinded design with a wait-list control group. Participants will be informal carers of people with dementia in Alzheimer’s disease or behavioral-variant Frontotemporal degeneration with an onset before the age of 65 years. The primary outcome will be caregiving self-efficacy after 6 weeks of program use. As secondary outcomes caregivers’ stress and burden, carer health-related quality of life, caring-related knowledge, patient problem behaviors and user satisfaction will be assessed. Program utilization will be monitored and a health-economic evaluation will also be performed. Conclusions: The RHAPSODY project will add to the evidence on the potential and limitations of a conveniently accessible, user-friendly and comprehensive internet-based intervention as an alternative for traditional forms of counseling and support in healthcare, aiming to optimize care and support for people with YOD and their informal caregivers. / RHAPSODY is an EU Joint Program - Neurodegenerative Disease Research (JPND) project. The project is supported through the following funding organizations under the aegis of JPND (www.jpnd.eu). France: National Research Agency; Germany: Ministry of Education and Research; The Netherlands: The Netherlands Organization for Health Research and Development; Portugal: Foundation for Science and Technology; Sweden: The Swedish Research Council; United Kingdom: Economic and Social Research Council.

Yes / Informal caregivers of people with dementia develop their own beliefs about the condition, referred to as Dementia Representations (DRs), as they try to make sense of the changes they are observing. The first aim of this study was to provide a profile of the types of DRs held by caregivers. The second aim was to examine the impact of caregivers’ DRs on their well-being, satisfaction with life (SwL) and caregiving stress. Methods: Participants were 1264 informal caregivers of people in the mild-to-moderate stages of dementia from time-point 1 of the IDEAL cohort study. Measures: DRs were measured using questionnaire items covering: Identity, Cause, Control, and Timeline. Results: Almost half (49.2%) of caregivers used a diagnostic term to describe the person’s condition, although 93.4% of caregivers stated they were aware of the diagnosis. Higher well-being, SwL, and lower caregiving stress were associated with the use of an identity term relating to specific symptoms of dementia, attributing the cause to ageing or not knowing the cause, and believing the condition would stay the same. Lower well-being, SwL, and higher caregiving stress were associated with believing there was little that could be done to control the effects of the condition. Conclusion: Healthcare professionals should assess and gain an understanding of caregivers’ DRs in order to provide more tailored information and support. / Economic and Social Research Council (UK) and the National Institute for Health Research (UK) grant ES/L001853/2

Yes / Objectives: The capability to 'live well' in people with dementia can be influenced by many factors, including those related to the experiences of their informal caregiver. How caregivers experience their own role can affect not only their well-being but also the way they provide care and hence the experience of the person with dementia. The aim of this study is to identify the potential impact of the caregiver's perception of the caregiving experience on how people with mild to moderate dementia self-rate their QoL, well-being and satisfaction with life. Method: This study utilised time-point 1 data from 1283 informal caregiver and the 1283 people with dementia whom they provide care from the IDEAL cohort study. Multivariate modelling was used to investigate the associations between measures related to the caregiver's perception of the caregiving experience (caregiving stress, perceived social restrictions, caregiving competence, positive aspects of caregiving, and coping) and the self-ratings of QoL, satisfaction with life, and well-being by the person with dementia. Results: Lower QoL ratings by the person with dementia were associated with high caregiver stress (−1.98; 95% CI: −2.89, −1.07), high perceived social restrictions (−2.04; 95% CI: −2.94, −1.14) and low caregiving competence (−2.01; 95% CI: −2.95, −1.06). Similar associations were found for satisfaction with life and wellbeing. Positive aspects of caregiving and coping were not associated with outcomes for the person with dementia. Conclusion: The findings indicate that how the caregiver experiences caregiving can affect the person with dementia. This finding reinforces the importance of providing support to caregivers. / The IDEAL study is funded by the Economic and Social Research Council (UK) and the National Institute for Health Research (UK) through grant ES/L001853/2 ‘Improving the experience of dementia and enhancing active life: living well with dementia’.

Yes / Mothers of school age and older children with developmental disabilities experience poorer health than mothers of typically developing children. This review assesses the evidence for the effect on mothers' health of caring for young children with developmental disabilities, and the influence of different disability diagnoses and socioeconomic status. Medline, EMBASE, PsycINFO and CINAHL were searched. Studies measuring at least one symptom, using a quantitative scale, in mothers of preschool children (0-5 years) with and without a diagnosed developmental disability were selected. Random effects meta-analysis was performed, and predictive intervals reported due to high expected heterogeneity. The meta-analysis included 23 estimates of association from 14 retrospective studies for the outcomes of stress (n = 11), depressive symptoms (n = 9), general health (n = 2) and fatigue (n = 1). Caring for a child with a developmental disability was associated with greater ill health (standardised mean difference 0.87; 95% predictive interval - 0.47, 2.22). The largest association was for mixed developmental disabilities (1.36; - 0.64, 3.36) and smallest for Down syndrome (0.38; - 2.17, 2.92). There was insufficient socioeconomic information to perform subgroup analysis. The small number of studies and data heterogeneity limited the precision of the estimates of association and generalizability of the findings. Mothers of young children with developmental disabilities may have poorer health than those with typically developing children. Research is needed to identify whether the relationship is causal and, if so, interventions that could reduce the negative effect of caregiving. / Sarah Masefeld was supported by a match funded studentship from the University of York and the Health e-Research Centre ref PhD2016PP2.

Yes / Unpaid carers for people with dementia play a crucial role in society. Emerging evidence suggests the COVID-19 pandemic has negatively impacted on carers. This study sought to explore the impact of the COVID-19 pandemic on carers for community-dwelling people with dementia and compare responses with pre-pandemic data. Data were collected between September 2020 and April 2021 in England and Wales. Carers were identified from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort and data were collected either through the telephone, video conferencing, or an online questionnaire. Responses from 242 carers were compared against benchmark data from the IDEAL cohort collected pre-pandemic. Analyses were conducted for the full sample of carers and spousal/partner carers only. In total 48.8% of carers thought their healthcare needs were negatively affected during the pandemic. Compared with pre-pandemic data carers were more lonely and experienced less life satisfaction. There was little impact on carers' experience of caregiving, although carers felt trapped in their caregiving role. Carers were more optimistic and had higher social contact with relatives. There were changes in the methods carers used for contacting relatives and friends. Most carers coped very or fairly well during the pandemic. There was little difference in the experiences of spousal/partner carers and the full sample. After a long period of providing care under pandemic conditions carers require additional support. This support needs to be focused on alleviating feelings of loneliness and increasing life satisfaction. Services need to consider how to improve access to health care, particularly resuming face-to-face appointments. / Economic and Social Research Council, Alzheimer's Society, National Institute for Health Research.

Yes / The discrepancy between caregiver-ratings and self-ratings of abilities is commonly used to assess awareness in people with dementia. We investigated the contribution of caregiver and dyadic characteristics to the difference in perspective between caregiver-informants and people with dementia about difficulties experienced, when considering awareness of condition. Methods: We conducted exploratory cross-sectional analyses using data from the IDEAL cohort. Participants were 1,038 community-dwelling people with mild-to-moderate dementia, and coresident spouse/partner caregivers. The Representations and Adjustment to Dementia Index (RADIX) checklist reporting difficulties commonly experienced in dementia was completed by 960 caregiver-informants and 989 people with dementia. Difference in scores was calculated for 916 dyads. Demographic information, cognition, informant-rated functional ability and neuropsychiatric symptoms were recorded for the person with dementia. Self-reported data were collected on mood, comorbidity, religion, importance of religion, relationship quality, and caregiver stress. Results: For most dyads, caregivers reported more RADIX difficulties than people with dementia. Caregiver RADIX ratings were more closely associated with informant-rated functional ability and neuropsychiatric symptoms than with cognition. More RADIX difficulties and higher stress were reported by female caregivers. Greater RADIX difference was associated with more caregiver stress, and older age but less depression in people with dementia. Conclusion: Few dyadic characteristics were important, but caregiver stress was higher where caregivers reported more RADIX difficulties and/or the difference in perspective was greater, whereas partners with dementia reported better mood. In addition to offering information about awareness of condition, the caregiver rating and difference in perspectives could indicate where more support is needed. / The author(s) declare financial support was received for the research, authorship, and/or publication of this article. The IDEAL study was funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health and Care Research (NIHR) through grant ES/L001853/2. m. ESRC is part of UK Research and Innovation (UKRI). ‘Improving the experience of Dementia and Enhancing Active Life: a longitudinal perspective on living well with dementia. The IDEAL-2 study’ is funded by Alzheimer’s Society, grant number 348, AS-PR2-16-001.

Personality characteristics of spousal and adult children and active potential caregivers of persons with Alzheimer's Disease were studied in order to better predict caregiver burden and aspects of well-being. Contrary to prediction, no differences were found between spouse and adult children active caregivers on measures of well-being. Additionally, adult children potential caregivers indicated feeling less control over their lives than spouse potential caregivers. When social desirability was controlled, active caregivers reported greater fluctuations in affect than did potential caregivers. As predicted, personality characteristics of individuals were found to have the biggest role in determining which individuals experience stress or burden.

我國面臨高齡化社會的趨勢，為因應老人照顧需求快速增加，家庭作為老人照顧支持體系的一環，有關老人家庭照顧者的議題得到來自各種專業領域的重視。檢視國內外既有文獻的討論，對於家庭照顧者的照顧經驗及困境，已累積有豐富的研究成果，然而，相關研究成果基本上著重於日益增加的照顧需求如何影響女性照顧者的生活。有鑑於前人研究發現，兩性在照顧工作方面的投入與影響確有差異，因此，為求對我國家庭照顧者有更全面性及完整性的思考，確有需要對從事家庭照顧的男性加以瞭解。本研究立基於國內既有研究成果及國外相關研究的啟發，透過性別關注的角度切入家庭照顧議題，以我國佔三至四成的男性照顧者為對象，瞭解我國男性家庭照顧者的獨特照顧經驗。本研究目的包括：(一)探討男性家庭照顧者形成的歷程；(二)男性照顧者對照顧工作的經驗感受及其影響；(三)男性家庭照顧者的應付策略及社會支持；(四)提出具性別敏感的政策參考。 本研究採用質性研究方法，深入訪談十二位正在從事家庭照顧工作的男性。重要研究發現為：(一)男性家庭照顧者形成的歷程，依序決定於「勞動就業狀況」、「性別角色規範」以及「親屬關係」。(二)男性家庭照顧者的經驗感受，在情緒認知、表達方式及角色自主性方面，存在男性氣概與照顧者被期待特質之間的矛盾拉扯，同時面臨就業及照顧工作的衝突。(三)男性家庭照顧者的應付策略，傾向以工具性問題解決模式，運用個人經濟資源的優勢，解決照顧工作的困境，其方法包括：創新照顧方法、調整自己的想法、及分攤照顧責任。最後，本研究分別從「保障老人權益減少依賴」、「提供性別適切的照顧者福利支持措施」、「解構照顧工作之性別分化」三個方面提出政策建議。 / As a response to the increasing demand of elder care in the modern aging society, the issue of home care for the elder has attracted more attention in several academic fields. In the literature, there have been some research findings about the experiences and challenges of home caregivers. However, these discussions primarily focused on the impact of caring works on the female caregivers. According to the previous research, there exists significant difference between male and female caregivers in their ways of input and impact from caring work. There is a need to study the topics of male caregivers in order to have a thorough understanding of home caregivers. This thesis studies the relations between gender difference and caregiving by exploring the unique experience of male caregivers, who take 30% to 40% share of total caregivers in Taiwan. The main purposes of this research include: (i) the formation of male caregivers; (ii) the experience and impact of caring work on the male caregivers; (iii) the coping strategy of male caregivers and their social support; (iv) the accordingly policy suggestions with gender-sense. This study adopts qualitative research methods by interviewing twelve male caregivers in Taiwan. The major findings can be summarized as (i) The formation of male caregivers depend on the job market condition, the normative gender role, and kinship relations. (ii) There exist conflicts between socially expected characteristics of care providers and male care provider's masculinity in the caregiving process. Examples include the conflicts between recognized and actual ways of emotion expression, between autonomic and constrained (defined) role playing, and between personal career development and home care works. (iii) The male caregivers develop several innovative problem solving strategies, such as using personal economic resources, adjusting predominate thinking, and sharing care responsibilities with others. Finally, this study provides concrete policy implications in three aspects: reducing elders' dependence, increasing governmental support with gender-sense for caregivers, and de-constructing the division of gender on caregiving systems.

Caregivers (CG) often neglect their own self-care which may have deleterious effects if CG have a chronic illness, such as diabetes. Care demands have been linked to CG health, although the mechanisms are unclear. The purpose of this study was to examine the relationships of CG stress, depressive symptoms, and diabetes self-care practices on CG physical health (PH) and glycemic control (GC) in an underrepresented group of Hispanic CG with diabetes. A correlational design was used in a non-random sample of 42 Hispanic CG with diabetes (Type I or II) recruited from two health centers serving the uninsured. CG had diabetes for ≥ 6 months, were on average 48.0 (± 11.4) years old, 73.8% female, and 54.8 % with < 8th grade education. Care recipients were on average 53.9 (± 14.0) years old, 54.8 % male, and were functionally independent. Standard questionnaires for perceived caregiving stress (Caregiver Burden Scale), depressive symptoms (CES-D), diabetes self-care practices (Diabetes Care Profile), PH (PCS of the SF12v2) and CG characteristics were administered in person. GC was measured using the glycosylated hemoglobin A1c (HgbA1c). Statistical analysis included correlations, t-tests, and multiple linear regression. On average CG had poor GC (HgbAlc M = 9.0, ± 2.12), but rated their PH better than others with diabetes. CG with high stress had more depressive symptoms (M = 23.75 ± 12.75) than CG with lower stress (M = 15.75 ± 12.01; t (40) = 2.00, p = .026). Almost half (40.5%) had depressive symptoms indicating possible clinical depression. The hypothesized models of caregiver stress, depressive symptoms, and self-care practices were not associated with CG PH (p > .05) or GC (p >.05); however, more persons in the household was associated with poor GC. This study provided support for the influence of CG stress on psychological health in the experience of Hispanic CG with diabetes. The findings of high levels of depressive symptoms and poor GC suggest the need for health care professionals to assess the psychological health of Hispanic CG and better educate them about the importance of GC for prevention of serious health problems.

Bakgrund: Minst var tredje person kommer under sin livstid att få en cancerdiagnos. Närstående till dessa personer kommer att spela en central roll i vårdandet. Att som närstående vårda beskrivs ofta som en stressande situation med psykiska och fysiska påfrestningar. Dessa påfrestningar hos närstående kan göra att de riskerar att drabbas av ohälsa. Hur dessa personer väljer att hantera situationen är individuellt och det är varje individs ansvar att se över sin hälsa och skapa strategier för att hantera dessa påfrestande situationer för att främja hälsan.   Syfte: Syftet med denna studie var att beskriva vilka copingstrategier närstående som vårdar patienter med cancersjukdom använder för att bevara den psykosociala hälsan.   Metod: En litteraturöversikt där artiklarna analyserades enligt en analysmodell av Friberg (2012). Artiklar lästes igenom, med fokus på resultat, för att kunna identifiera nyckelfynd. Varje artikels resultat sammanställdes och relaterades till varandra för att få fram nya teman. Orems egenvårdsteori användes vid resultatdiskussionen.   Resultat: Resultatet presenteras i fem huvudteman; Vårdgivande och coping, Kognitiva copingstrategier, Normaliserande copingstrategier, Instrumentella copingstrategier och Psykosociala faktorer. Copingstrategier som framkom var omdirigering av tankar, positivt tänkande, tro, hopp, acceptans, upprätthålla rutiner, stark fasad, jämförelse, stöd och information. Andra områden som framkommer i resultatet är hur närstående utvecklar copingstrategier och förutsättningar för att uppleva stöd, vinster med vårdgivande och coping samt relationen till hälso- och sjukvården.   Slutsats: Resultatet visar en variation på användandet av copingstrategier samt skillnader och likheter i förhållande till dessa. Den enskilda individens erfarenheter och kunskaper spelar också roll vid utveckling av dessa. Copingstrategier tycktes även vara knutna till individens personliga resurser samt egna färdigheter. / Background: At least every third person will be diagnosed with cancer during his/hers lifetime. Relatives, familymembers and friends to these persons will play a central role in caring. Being a care giving relative, a family member or a friend to a person diagnosed with cancer, is often described as a stressful situation with both mental and physical strain. These strains in close relationships may lead to poor health. How each caregiver chooses to handle the situation is individual and he/she has a responsibility to self-assess health and create strategies to promote these stressful health situations.   Aim: The purpose of the study was to describe which coping strategies relatives, familymembers or friends who care for patients with cancer disease use to maintain psychosocial health.   Method: A literature review where the articles were evaluated with an analysis model according to Friberg (2012). Articles were read trough, focusing on results, to identify key findings. The results of each article were compiled and related to each other in order to develop new themes. Orem's self-care theory was applied to the resultdiscussion.   Result: The results were presented in five main themes; Caregiving and coping, Cognitive coping strategies, Normalizing coping strategies, Instrumental coping strategies and Psychosocial factors. Coping strategies that emerged were redirecting thoughts, positive thinking, faith, hope, acceptance, maintaining routines, strong facade, comparison, support, and information. Other areas found in the results are how relatives, familymembers or friends develop coping strategies and conditions for experiencing support, benefits with care and coping and the relationship with healthcare professionals.   Conclusion: The results show a variation in the use of coping strategies as well as differences and similarities in relation to these. Individual's experiences and knowledge play a part in the development of these copingstrategies. Which coping strategies individuals choose also seemed to be linked to their personal resources as well as own skills.