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Aim: To describe the co-designing process of an online support programme with and for informal carers of people with heart failure., Design: A co-design process built on core concepts and ideas embedded in co-design methodology., Data Sources: Our co-design process included three phases involving 32 informal caregivers and 25 content creators; (1) Identification of topics and content through literature searches, focus group interviews and user group sessions; (2) Development of the online support programme and; (3) Refinement and finalization which included testing a paper prototype followed by testing the online version and testing and approval of the final version of the support programme., Outcomes: The co-design process resulted in a support programme consisting of 15 different modules relevant to informal carers, delivered on a National Health Portal., Conclusion: Co-design is an explorative process where researchers need to balance a range of potentially conflicting factors and to ensure that the end users are genuinely included in the process., Relevance to Clinical Practice: Emphasizing equal involvement of end users (e.g. carers or patients) in the design and development of healthcare interventions aligns with contemporary ideas of person-centred care and provides a valuable learning opportunity for those involved. Furthermore, a co-designed online support programme has the capacity to be both accessible and meet end users' information and support needs, thereby optimizing their self-care abilities. Additionally, an online support programme provides the opportunity to address current challenges regarding scarce resources and the lack of healthcare personnel., Reporting Methods: Consolidated criteria for reporting qualitative research (COREQ)., Patient or Public Contribution: Both informal carers and content creators were involved in developing the support programme., (© 2023 The Authors. Journal of Clinical Nursing published by John Wiley & Sons Ltd.)

Objectives: To describe and reflect on the consumer engagement approaches used in five living guidelines from the perspectives of consumers (i.e., patients, carers, the public, and their representatives) and guideline developers., Study Design and Setting: In a descriptive report, we used a template to capture engagement approaches and the experiences of consumers and guideline developers in living guidelines in Australia and the United Kingdom. Responses were summarized using descriptive synthesis., Results: One guideline used a Consumer Panel, three included two to three consumers in the guideline development group, and one did both. Much of our experience was common to all guidelines (e.g., consumers felt welcomed but that their role initially lacked clarity). We identified six challenges and opportunities specific to living guidelines: managing the flow of work; managing engagement in online environments; managing membership of the panel; facilitating more flexibility, variety and depth in engagement; recruiting for specific skills-although these can be built over time; developing living processes to improve; and adapting consumer engagement together., Conclusion: Consumer engagement in living guidelines should follow established principles of consumer engagement in guidelines. Conceiving the engagement as living, underpinned by a living process evaluation, allows the approach to be developed with consumers over time., (Copyright © 2023 The Authors. Published by Elsevier Inc. All rights reserved.)

Although the older population has been rapidly growing, the availability of formal caregivers remains limited. Assistance provided by care robots has helped lower this burden; however, whether using a care robot while providing excretion care (EC) is quantitatively increasing or decreasing caregivers' physical care burden has not been extensively studied. This study aimed to quantitatively compare the physical burden experienced by caregivers while providing manual excretion care (MC) using a paper diaper versus robot-aided care (RC). Ten formal caregivers voluntarily participated in the experiment. MC and RC tasks were structuralized according to phases and classified by characteristics. The experiment was conducted in a smart care space. The physical load of formal caregivers was estimated by muscular activity and subjective rating of perceived physical discomfort. The results demonstrated that although the physical load on the lower back and upper extremities during the preparation and post-care phases were greater in RC than MC, RC markedly alleviated caregivers' physical load when performing front tasks. In the preparation-care phases, the physical loads on the lower back and upper extremities were approximately 40.2 and 39.6% higher in the case of RC than MC, respectively. Similar to the preparation-care phases, the physical loads on the lower back and upper extremities during post-care phases were approximately 39.5 and 61.7% greater in the case of RC than MC, respectively. On the other hand, in the front-care phases, the physical loads on the lower back and upper extremities were approximately 25.6 and 34.9% lower in the case of RC than MC, respectively. These findings can quantitatively explain the effectiveness and features of a care robot to stakeholders and provide foundational research data for the development of EC robots. This study emphasizes the implementation and promotion of the dissemination, popularization, and development of care robots to fulfill formal caregiving needs.

Background: Social support services such as day care centres are important in post-diagnostic dementia care to enable people living with dementia stay at home for longer. Little research has addressed potential inequalities in access, with no research on variations before and since COVID-19. The aim of this study was to explore inequalities in social support service usage before and since the pandemic., Methods: Unpaid carers and people living with dementia were interviewed over the phone about their experiences of accessing social support services before and since the COVID-19 pandemic. Transcripts were analysed for key themes using inductive and deductive thematic analysis., Results: Fifty participants (42 unpaid carers; eight people living with dementia) were interviewed, and five themes identified: (1) Service issues; (2) Access issues; (3) Relying on own initiative; (4) New inequalities due to COVID-19; and (5) Missing out on the benefits of support services. Participants reported transport, finances, and location as factors reducing their ability to access support service pre-COVID, with inequalities remaining and at times exacerbated since. Carers and people living with dementia also reported struggling with accessing basic necessities during COVID, including food and medicines., Conclusions: Considering the benefits of accessing support services, resourced procedures and facilities are needed to maintain access to support services with more accessible remote support provision, enabling people from all backgrounds to access the care they need.

Aim: Using an integrated model of health literacy, we discuss the importance of health literacy among foreign domestic workers in the provision of informal caregiving during outbreaks of communicable diseases. COVID-19 pandemic is used as an example., Background: Adequate health literacy in the population is known to be important for the prevention of communicable diseases. Foreign domestic workers, a group of marginalised caregivers in private households, are generally presumed to have limited health literacy because of numerous socio-cultural disadvantages. To date, there is limited evidence that these informal healthcare providers receive support from community-based nurses., Design: A discursive paper., Conclusion: Foreign domestic workers, with varying levels of health literacy, may be viewed either as a resource to break the chain of infection or as a potential reservoir of communicable diseases in the community. Meanwhile, restrictions imposed in response to diseases transmissions (e.g. stay-at-home measures for COVID-19) may directly exacerbate the social support received by these foreign domestic works and their ability to access health-related information. There are also concerns about their ability to appraise and evaluate information related to communicable diseases at a time when fake news and misinformation are being disseminated through social media. Language and cultural barriers are important issues that need to be addressed to ensure that foreign domestic workers are in a position to follow public health recommendations., Relevance to Clinical Practice: Nurses hold an important position in empowering foreign domestic workers with adequate health literacy, by engaging groups of foreign domestic workers in the community and their consulates in planning educational programmes and effectively disseminating information. At a time of global pandemic, an assessment of the health literacy levels of foreign domestic workers in places like Hong Kong is urgently required., (© 2020 John Wiley & Sons Ltd.)

Objectives: DETERMIND (DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers) is designed to address fundamental, and, as yet unanswered questions about inequalities, outcomes and costs following diagnosis with dementia. These answers are needed to improve the quality of care and equity of access to care, and therefore the quality of life, of people with dementia and their carers., Method: DETERMIND is a programme of research consisting of seven complementary workstreams (WS) exploring various components that may result in unequal dementia care: WS1: Recruitment and follow-up of the DETERMIND cohort-900 people with dementia and their carers from three geographically and socially diverse sites within six months following diagnosis, and follow them up for three years. WS2: Investigation of the extent of inequalities in access to dementia care. WS3: Relationship between use and costs of services and outcomes. WS4: Experiences of self-funders of care. WS5: Decision-making processes for people with dementia and carers. WS6: Effect of diagnostic stage and services on outcomes. WS7: Theory of Change informed strategy and actions for applying the research findings., Outcomes: During the life of the programme, analysing baseline results and then follow-up of the DETERMIND cohort over 3 years, we will establish evidence on current services and practice. DETERMIND will deliver novel, detailed data on inequalities in dementia care and what drives positive and negative outcomes and costs for people with dementia and carers, and identify factors that help or hinder living well with dementia., (© 2019 John Wiley & Sons, Ltd.)

Competing Interests: Competing interests: None declared.

Study Design: Family members caring for chronically ill relatives are typically sedentary, chronically stressed, and at high risk of disease. Observational reports suggest caregivers have accelerated cellular aging as indicated by shorter leukocyte telomere lengths. We performed a randomized controlled trial to examine the effect of aerobic exercise on changes in telomerase levels (primary outcome) and telomere lengths (secondary outcome) in inactive caregivers., Methods: 68 female and male community dwelling dementia caregivers who reported high stress and physical inactivity were randomly assigned to a highly supervised aerobic exercise intervention vs. waitlist control group for 24 weeks. Average leukocyte telomere lengths and peripheral blood mononuclear cells' telomerase activity were measured pre- and post-intervention. All staff completing blood draws, fitness testing and bioassays were blinded to group assignment., Results: The intervention group completed approximately 40 min of aerobic exercise 3-5 times per week, verified by actigraphy. There was high (81%) adherence to 120 min/week of aerobic exercise. Groups did not significantly differ in telomerase activity changes across time, but had significant different telomere length changes across time (67.3 base pairs, 95%CI 3.1, 131.5). There were also significant reductions in body mass index and perceived stress and an increase in cardiorespiratory fitness (i.e., VO 2peak ) in the exercising caregivers versus controls., Conclusion: In the context of a highly controlled intervention, exercise can induce apparent telomere lengthening, though the mechanisms remain elusive. Our study underscores the importance of increasing participation in aerobic exercise to improve markers of health and attenuate cellular aging in high-risk samples., (Copyright © 2018. Published by Elsevier Ltd.)

Transition services—programs that support adolescents and young adults (AYAs) as they move from a child‐centered to a more autonomous, adult‐orientated healthcare system—have been associated with improved short‐ and long‐term healthcare outcomes. Unfortunately, there is a paucity of evidence exploring transition services within the neurogastroenterology and motility (NGM) field. The overall aim of this article, endorsed by the American Neurogastroenterology and Motility Society and European Society of Neurogastroenterology and Motility, is to promote a discussion about the role of transition services for patients with NGM disorders. The AYAs addressed herein are those who have: (a) a ROME positive disorder of gut–brain interaction (DGBI), (b) a primary or secondary motility disorder (including those with motility disorders that have been surgically managed), or (c) an artificial feeding requirement (parenteral or enteral tube feeding) to manage malnutrition secondary to categories (a) or (b). The issues explored in this position paper include the specific physical and psychological healthcare needs of patients with NGM disorders; key healthcare professionals who should form part of a secondary care NGM transition service; the triadic relationship between healthcare professionals, caregivers, and patients; approaches to selecting patients who may benefit most from transition care; methods to assess transition readiness; and strategies with which to facilitate transfer of care between healthcare professionals. Key areas for future research are also addressed, including the construction of NGM‐specific transition readiness questionnaires, tools to assess post‐transfer healthcare outcomes, and educational programs to train healthcare professionals about transition care in NGM. [ABSTRACT FROM AUTHOR]

Background: This paper seeks to explore the opportunities and challenges generated by current policy, guidance and legislation in England relating to older people, in terms of the practical implications for older people with learning disabilities. Methods: Using the broad themes housing, employment, social inclusion and isolation, care and support, and promoting better health and well-being, this paper discusses potential practical opportunities and concerns for older people with learning disabilities arising from policy and legislation such as current initiatives regarding integration, personalisation and the dementia policy. Consideration is given to the implications of changing policy and practice for both current and future generations of people with a learning disability as they reach older age. Conclusions: This discussion paper concludes that whilst there is potential for older people with a learning disability to benefit from policy and practice aimed at improving the lives of older people generally, the tendency for policy to be targeted at specific groups without adequately considering the diversity of those groups often leaves those with a learning disability at the margins of being able to make the most of changes.

Background: The MODEM project (A comprehensive approach to MODelling outcome and costs impacts of interventions for DEMentia) explores how changes in arrangements for the future treatment and care of people living with dementia, and support for family and other unpaid carers, could result in better outcomes and more efficient use of resources., Methods: MODEM starts with a systematic mapping of the literature on effective and (potentially) cost-effective interventions in dementia care. Those findings, as well as data from a cohort, will then be used to model the quality of life and cost impacts of making these evidence-based interventions more widely available in England over the period from now to 2040. Modelling will use a suite of models, combining microsimulation and macrosimulation methods, modelling the costs and outcomes of care, both for an individual over the life-course from the point of dementia diagnosis, and for individuals and England as a whole in a particular year. Project outputs will include an online Dementia Evidence Toolkit, making evidence summaries and a literature database available free to anyone, papers in academic journals and other written outputs, and a MODEM Legacy Model, which will enable local commissioners of services to apply the model to their own populations., Discussion: Modelling the effects of evidence-based cost-effective interventions and making this information widely available has the potential to improve the health and quality of life both of people with dementia and their carers, while ensuring that resources are used efficiently.

Since the end of the Second World War in 1945, the erection of camps within and across state borders has become the most common response to the influx of displaced persons. Based on empirical evidence from northern Uganda, this paper aims to provide answers to two main questions: (i) how does the camp influence and frame the upbringing of children?; and (ii) how do caregivers shape and adjust upbringing within this setting and when they return to their 'former homes' ? Interviews and focus-group discussions were conducted with 48 caregivers living in Kitgum District, northern Uganda. Deductive thematic analysis was employed to structure participants' accounts of past and present interconnections between upbringing and (previous) encampment. By paying close attention to their (counter-)narratives, people's agency and coping are emphasised through the simultaneous forging of new interconnections (that is, discontinuities) and holding on to old interconnections (that is, continuities) between upbringing, the camp, and the post-war village., (© 2024 ODI.)

Pulmonary arterial hypertension is an uncommon and devastating chronic illness with no known cure. Little is known about the disease, and even less about the psychosocial burdens. While it is important to create awareness about the physical aspects of the disease, it is equally important to create awareness about the psychosocial burdens patients and their families face. We reviewed the literature to better understand these psychosocial burdens, which include impact from physical limitations, emotional strains, financial burdens, social isolation, lack of intimacy in relationships, and an overall lack of information. The findings can be used to assist health care providers to understand the psychosocial challenges that are being experienced by patients and families in order to better provide supportive care. The creation of a standardized tool to assess the psychosocial burdens at each clinic visit can benefit health care providers by addressing challenges faced and facilitate subsequent referral to appropriate specialists.

Fully elucidating the burden that Lennox-Gastaut syndrome (LGS) places on individuals with the disease and their caregivers is critical to improving outcomes and quality of life (QoL). This systematic literature review evaluated the global burden of illness of LGS, including clinical symptom burden, care requirements, QoL, comorbidities, caregiver burden, economic burden, and treatment burden (PROSPERO ID: CRD42022317413). MEDLINE, Embase, and the Cochrane Library were searched for articles that met predetermined criteria. After screening 1442 deduplicated articles and supplementary manual searches, 113 articles were included for review. A high clinical symptom burden of LGS was identified, with high seizure frequency and nonseizure symptoms (including developmental delay and intellectual disability) leading to low QoL and substantial care requirements for individuals with LGS, with the latter including daily function assistance for mobility, eating, and toileting. Multiple comorbidities were identified, with intellectual disorders having the highest prevalence. Although based on few studies, a high caregiver burden was also identified, which was associated with physical problems (including fatigue and sleep disturbances), social isolation, poor mental health, and financial difficulties. Most economic analyses focused on the high direct costs of LGS, which arose predominantly from medically treated seizure events, inpatient costs, and medication requirements. Pharmacoresistance was common, and many individuals required polytherapy and treatment changes over time. Few studies focused on the humanistic burden. Quality concerns were noted for sample representativeness, disease and outcome measures, and reporting clarity. In summary, a high burden of LGS on individuals, caregivers, and health care systems was identified, which may be alleviated by reducing the clinical symptom burden. These findings highlight the need for a greater understanding of and better definitions for the broad spectrum of LGS symptoms and development of treatments to alleviate nonseizure symptoms., (© 2024 The Authors. Epilepsia published by Wiley Periodicals LLC on behalf of International League Against Epilepsy.)

Aim: To identify, describe and synthesise what is known about family carers' experiences and perspectives of engagement in delirium prevention and care for adults in hospital., Design: Systematic review and synthesis of qualitative evidence., Data Sources: Comprehensive literature search within PubMed, CINAHL, EMBASE, Scopus, Cochrane Central and PsycInfo databases to August 2022. Peer reviewed original qualitative research published in English., Methods: Data were extracted using Covidence systematic review software. Methodological quality was reviewed against the Critical Appraisal Skills Program (CASP) Qualitative Checklist. Thematic synthesis was used to develop analytical themes. Confidence in the Evidence from Reviews of Qualitative Research (GRADE-CERQual) framework was applied to findings., Results: Of 3429 records identified, 29 met criteria for final inclusion. Studies included a range of settings (intensive care, medical and surgical wards) and family carer types (spouse, daughter, parent and friend). Three primary themes Shared Caregiving, Partnership and Support, Communication for Shared Understanding and three cross-cutting contextual themes Care Transitions, Family Carer Context and Hospital Context were identified. Family carers have mixed experiences of involvement in delirium care and prevention. Family carer engagement in care impacted perceptions of care quality and their own self-efficacy. Where person-centred care expectations were not met, some family carers adopted compensatory or care contingency strategies. Information sharing and timely support from hospital staff who understood the carer context supported carer involvement. Supportive physical environments and addressing power imbalances allowed greater engagement., Conclusion: Family carers often wish to be involved in delirium prevention and care, but need to be recognised as individuals, listened to, informed and supported to optimise their contribution., Impact: The review findings can guide health professional and decision makers to optimise family carer involvement in delirium care programs., Protocol Registration: PROSPERO [CRD42020221854]., Reporting: ENTREQ. No Patient or Public Contribution., (© 2024 The Authors. Journal of Clinical Nursing published by John Wiley & Sons Ltd.)

Background: The increasing frailty of home-dwelling older people can lead to rising expectations from their family caregivers due to various demographic developments and political guidelines. European data show that 60% of home-dwelling older people receive informal care. Frailty among older people is a state of vulnerability, increasing the risk of adverse health outcomes, declining daily activities and needing long-term care., Aim: To explore family caregivers' lived experiences with caring for frail, home-dwelling older people., Methods: We conducted a phenomenological study to obtain in-depth descriptions of the phenomenon. We interviewed nine family caregivers, five men and four women between 52 and 90 years old, in-depth in their homes. We used a hermeneutical phenomenological approach described by van Manen and followed the COREQ checklist., Results: The phenomenon's essential meaning is described as striving to adapt throughout the caring relationship. The interrelated themes describe different caring relationships, caring for a family member and letting go of the primary caring responsibility., Conclusions: Family caregivers describe care as meaningful yet demanding. In our study, the varying condition of frailty was an additional challenge in care. By addressing these challenges, healthcare providers can better support and help family caregivers to withstand their caring relationships. The Norwegian Centre for Research Data approved the study (Ref.61202)., (© 2023 The Authors. International Journal of Older People Nursing published by John Wiley & Sons Ltd.)

Background: Child survival remains a major public health challenge in the sub-Saharan region of Africa, especially Nigeria. The Boko Haram crisis, which has aggravated this, has led to the displacement of many people in the north-eastern region, including children under five. This study investigated the determinants of child survival practice among caregivers in internally displaced persons' (IDP) camps in Abuja Municipal Area Council (AMAC), Nigeria., Methodology: A cross-sectional design was used to collect data on determinants of child survival practice from 312 caregivers in five purposively selected IDP camps in AMAC using the snowball sampling technique. Data were analysed using univariate, bivariate, and multivariate statistics at 5% level of significance., Results: The mean age of respondents was 29.6 ± 6.72 years. There was a significant (p < 0.05) relationship between the predisposing, reinforcing, enabling and environmental factors studied and child survival practice. Findings also indicated that all factors were significant (p < 0.05) predictors of child survival practice with the reinforcing factor being the major predictor (ß = 0.38; t = 6.08)., Conclusion: Attention needs to be paid to all factors, particularly the reinforcing factor of social support in order to promote optimal child survival practice among caregivers in AMAC IDP camps. Collaboration with social work professionals would be an added benefit to enhance social support., (© 2023 John Wiley & Sons Ltd.)

Objective: Issues regarding clinician communication remain an important source of complaints within healthcare. This systematic review aims to determine cancer patients' and their family caregivers' views on which clinicians' communication behaviors can harm (i.e. eliciting negative feelings/consequences for patients/family caregivers)., Methods: We searched for all types of peer-reviewed studies that determined adult (≥18 years) cancer patients' and/or family caregivers' perspectives on which clinicians' communication behaviors can harm in several databases (PubMed, Embase, Web of Science, Cochrane Library, Emcare, PsycINFO and Academic Search Premier), supplemented by expert-consultation. Studies were screened using the Artificial intelligence screening tool of ASReview and data was analyzed using Thematic Analysis. To assess the quality of the studies the Qualsyst critical appraisal tool was used., Results: A total of 47 studies were included. Four main themes of harmful communication behaviors were identified: (1) Lack of tailored information provision (e.g. giving too little or too much/specific information) (2) Lack of tailored decision making (ranging from; patient exclusion, to the patients' responsibility, and/or haste) (3) Lack of feeling seen and heard (seen as a disease, not as a human being; not listened to concerns and emotions) (4) Lack of feeling held and remembered (forgotten agreements; lack of care continuity)., Conclusions: Our results reveal an overview of patients' and family caregivers' perspectives on which clinicians' communication behaviors can harm. Harm could be prevented when information and decision involvement are tailored and patients' and family caregivers' needs to feel seen, heard, held and remembered are met., (© 2023 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.)

The 2023 edition of the AIxIA Conference, held in Rome, brought together a large number of researchers and practitioners to discuss the most recent and important advancements in Artificial Intelligence (AI). The conference featured 19 workshops, organized by 77 experts, attracting 248 submissions and resulting in 16 proceedings. This special issue presents extended versions of selected papers initially showcased at these workshops. Each paper underwent rigorous review and represents a diverse array of topics, reflecting the multifaceted nature of the Italian AI community. The topics covered include ethical foundations to symbiotic AI, symbolic knowledge extraction from black-box models, creative influence prediction using graph theory, AI approaches to multidimensional poverty prediction, an assessment of AI-based supports for informal caregivers, deep learning-based EEG denoising, AI-assisted board-game-based learning, large language models for assessment and feedback in higher education, geometric reasoning in the Traveling Salesperson Problem, defeasible reasoning in weighted knowledge bases, and conditional computation in neural networks. These contributions demonstrate the innovative and interdisciplinary research within the AI community, offering valuable insights and advancing the field. [ABSTRACT FROM AUTHOR]

Background: Some older family caregivers experience financial vulnerabilities due to their caregiving role, which may affect their ability to afford appropriate food. This study aimed to assess the extent to which there are diet-related disparities among older family caregivers in Eastern Finland., Methods: This study is based on the multidisciplinary LifEstyle, NutriTion and Oral health in caregivers (LENTO) study. In total, 125 family caregivers were included. Data were collected between June and December 2019. Participants were assessed on health, nutritional status and sociodemographic factors. The associations and predictors of diet-related disparities were assessed using the independent samples t-test, ANOVA-test, χ 2 -tests and binary logistic regression., Results: The mean age of family caregivers was 74 years (SD = 8). Most were female (72%), 20% had malnutrition risk and 30% reported having 'moderately enough money' or less, which was identified as 'subjective poverty'. Family caregivers experiencing subjective poverty were less likely to consume two or more portions of fruit and vegetables daily and were more likely overweight. Study participants' diet-related disparities were further associated with several health inequalities, including comorbidity, depression, diabetes (Type I or II) and osteoporosis., Conclusions: Older family caregivers have diet-related disparities, further associated with health inequalities. Family caregivers' diet-related disparities require increasing attention in healthcare. Addressing family caregivers' food insecurity risk would enhance their health equity. Lack of assessment of diet-related disparities will only deepen health inequalities., (© 2023 The Authors. International Journal of Older People Nursing published by John Wiley & Sons Ltd.)

Background: We conducted the first known comprehensive literature review to (1) identify, categorize, and summarize the existing knowledge about the experiences of older persons and their caregivers during conflict situations; (2) identify the support needs of older persons and their caregivers, and; (3) identify gaps in the literature and understanding that may inform future research., Methods: A scoping review methodology of academic peer-reviewed and gray English language literature was employed using six academic literature databases and one gray literature database. We further performed comprehensive searches of relevant search engines and organization websites and bibliographic hand searches to identify additional academic and gray literature. Two authors screened for eligibility of identified studies and documents. One reviewer extracted data regarding authors, article type, geographic origin, key participant characteristics, aims, study design and data collection method, results, conclusions and limitations. Data were analyzed thematically., Results: 83 documents met this review's inclusion criteria, including 21 academic documents and 62 from the gray literature. Thematic analysis revealed that conflict situations exacerbate existing inequalities experienced by older persons. Within this overarching theme were three interconnected sub-themes: (1) Older adults are particularly vulnerable during conflict situations; (2) Older persons are inadequately supported in conflict situations; (3) In the face of great challenges, many older adults still manage to endure through conflict situations. We identified 15 recommendations from the reviewed documents to better support older adults in conflict situations., Conclusions: Existing inequalities, such as ageism and ableism, targeted discrimination, and poor health outcomes, become exacerbated during conflict situations, resulting in older persons being less able to flee and meet their daily needs with sufficient access to necessities and healthcare. Little is known of the experiences and needs of family caregivers during conflict situations. We identified several opportunities to improve the experience and support of older persons in conflict situations., (© 2023 The Authors. Journal of the American Geriatrics Society published by Wiley Periodicals LLC on behalf of The American Geriatrics Society.)

Background: Domestic, family and sexual violence is a prevalent health and social issue. Nurses may be exposed to higher rates of this violence in their personal lives compared to the community, but little is known about their polyvictimisation experiences or health and well-being impacts., Methods: An online descriptive, cross-sectional survey of women nurses, midwives and carer members of the Australian Nursing and Midwifery Federation (ANMF) (Victorian Branch) (response rate: 15.2% of nurses sent an invitation email/28.4% opened the email). Violence survey measures included: intimate partner violence (Composite Abuse Scale); child abuse and sexual violence (Australian Bureau of Statistics Personal Safety Survey items). Health measures included: Short Form-12; Fast Alcohol Screening Test; Patient Health Questionnaire-4; Short Screening for DSM-IV Posttraumatic Stress Disorder; well-being measures included: Connor-Davidson Resilience Scale, social support, and financial stress. Proportions were used to describe the prevalence of violence by sociodemographic characteristics and health and well-being issues; logistic regression predicted the odds of experiencing overlapping types of violence and of experiencing health and well-being outcomes., Results: 5,982 participants (from a parent study of 10,674 nurses, midwives and carers) had experienced at least one type of lifetime violence; half (50.1%) had experienced two or three types (polyvictimisation). Survivors of child abuse were three times more likely to experience both intimate partner violence and non-partner adult sexual assault. Any violence was associated with poorer health and well-being, and the proportion of affected participants increased as the types of violence they had experienced increased. Violence in the last 12-months was associated with the poorest health and well-being., Conclusions: Findings suggest a cumulative, temporal and injurious life course effect of domestic, family and sexual violence. The polyvictimisation experiences and health and well-being associations reported by survivor nurses, midwives and carers underscores the need for more accessible and effective workplace interventions to prevent and mitigate psychosocial ill health, especially in the recent aftermath of violence., (© 2024. The Author(s).)

Children on home invasive mechanical ventilation necessitate specialized equipment, continuous monitoring, and multidisciplinary care. Transitioning these children from hospital to home care is complex, demanding careful planning. Guidelines and observational studies emphasize the importance of a standardized, comprehensive, and staged educational approach for caregiver education in discharge planning, yet program variations persist, lacking standardized checklists. This review aims to offer insights into crucial factors for a successful transition from hospital to home care for children using home-invasive mechanical ventilation while also developing comprehensive caregiver checklists to ensure high-quality care, taking into account families' socioeconomic status., (© 2023 Wiley Periodicals LLC.)

Providing care to a patient with cerebral palsy can have many negative impacts upon caregivers. This study was carried out to define caregiving burden in the caregivers of cerebral palsy patients and determine the relationships between religious coping, fatalism, and burden of care. This cross-sectional and correlational study included 132 caregivers. Data were obtained using the Religious Coping Scale, the Fatalism Scale, and the Caregiver Burden Scale. It was determined that 18.9% of the participants experienced a heavy care burden. The luck and pessimism dimensions of the Fatalism Scale were positively and weakly correlated with caregiving burden (p < 0.01), while there was no correlation between caregiving burden and positive or negative religious coping styles (p > 0.05). Perception of fatalism explained 10% of the total variance in caregiving burden (R = 0.329, R 2  = 0.109, F = 5.195, p = 0.002). It is recommended that caregivers be supported by religious experts to strengthen positive religious coping styles and advisable fatalism perceptions., (© 2023. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Objectives: To explore the profiles of psychological flexibility among dementia family caregivers and examine their associations with psychological well-being and caregiving factors., Methods: Participants were 521 dementia family caregivers in Japan. Latent profile analysis was conducted to explore the profiles of psychological flexibility. The analyses examined differences in depression, anxiety, life satisfaction, and work-family conflict/enrichment between the profiles, and whether sociodemographic variables and caregiving stressors predict the profile., Results: Four distinct profiles were identified: high psychological flexibility (14.2%), moderate psychological flexibility with high commitment (24.7%), moderate psychological flexibility with low commitment (48.0%), and low psychological flexibility (13.1%). The low psychological flexibility profile exhibited the highest scores of depression, anxiety and work-family conflict, followed by the moderate psychological flexibility with low/high commitment profiles, and the high psychological flexibility profile. The high psychological flexibility and moderate psychological flexibility with high commitment profiles exhibited higher life satisfaction than the moderate psychological flexibility with low commitment profile. Caregiving stressors, marital status, and caregiver status predicted the profile., Conclusion: Enhancing defusion and acceptance, rather than increasing commitment to personal values, may be beneficial in supporting distressed caregivers. Having more caregiving stressors, being single/divorced/bereaved, and being a primary caregiver may be useful indicators of decreased psychological flexibility among dementia family caregivers., (© 2024 Wiley Periodicals LLC.)

Purpose: This study aimed to investigate death anxiety (DA) in caregivers of patients with advanced cancer and identify associated factors in the context of Chinese culture., Methods: Caregivers (N = 588) of advanced cancer patients in a tertiary cancer hospital completed anonymous questionnaire surveys. Measures included the Chinese version of the Templer Death Anxiety Scale (C-T-DAS), the Quality-of-Life Scale, the State-Trait Anxiety Scale, and the Social Support Rating Scale. Data were analyzed in SPSS (IBM Corp, Armonk, NY, USA) using descriptive statistics, Pearson's correlation test, and linear regression., Results: Respondents returned 588 (93.03%) of the 632 questionnaires. The total C-T-DAS score was 7.92 ± 2.68 points. The top-scoring dimension was "Stress and pain" (3.19 ± 1.29 points), followed by "Emotion" (2.28 ± 1.31 points) and "Cognition" (1.40 ± 0.94 points). In contrast, the lowest-scoring dimension was "Time" (1.06 ± 0.77 points). Factors associated with DA (R 2  = 0.274, F = 13.348, p < 0.001) included quality of life (QoL), trait anxious personality, social support, caregiver length of care, caregiver gender, and patients' level of activities of daily living (ADL)., Conclusions: Our results demonstrated high levels of DA in caregivers of patients with advanced cancer. Generally, female caregivers and those with low social support had high DA. Caregivers caring for patients with low ADL levels or with a low QoL and trait anxious personality reported high DA. Certain associated factors help to reduce caregivers DA. Social interventions are recommended to improve the end-of-life transition and trait anxious personality as well as quality of life for caregivers., (© 2024. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

Objectives: For many people with dementia and unpaid carers, using technology for care and support has become essential. Rapid proliferation of technology highlights the need to understand digital access to health and social care services for dementia. This mixed-methods systematic review aims to explore digital access to health and social care services for dementia, from the perspective of people with dementia and unpaid carers., Methods: Nine electronic databases were searched in May 2023 for qualitative, quantitative, or mixed-method studies, published in English or German, focused on experiences of using technology-delivered health and social care services for people with dementia and unpaid carers. After removal of duplicates and screening, 44 empirical papers were included., Results: From the 44 studies, findings were grouped into five categories, highlighting experiences for people with dementia and unpaid carers: (1) Adapting to technology, (2) Inequalities and variations in outcomes, (3) Impact on caring, (4) Impact on health, and (5) Impact on relationships. Proliferation of technology in care access emphasised the need for quick adaptation to technology and examination of its impact. The impact of such service delivery has evidenced mixed findings. There were improvements in the health and wellbeing of people with dementia and unpaid carers, and benefits for their dyadic relationship. However, using technology for health and social care access is not always possible and is often reliant on unpaid carers for support. Lower tech-literacy, lack of equipment or money to buy equipment and poor internet connection can impact the potential for positive outcomes., Conclusions: Technology can bring great benefits: social inclusion, improved service access and care. However, using technology in service delivery in dementia needs careful thought. Professionals and service providers need to be cognizant of the complex nature of dementia, and the benefits and challenges of hybrid service delivery., (© 2024 The Author(s). International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.)

Engaging in meaningful activities (e.g., leisure, spiritual, fitness) significantly affects caregivers' quality of life (QoL), yet the determinants of participation in caregivers of Autistic children remain largely unknown. The current study examined child and caregiver correlates of primary caregiver participation in meaningful activities. One hundred and six primary caregivers of Autistic children (7-12 years) were recruited from three unique cohorts of Autistic children in this cross-sectional study. Primary caregivers completed online questionnaires measuring occupational gaps (i.e., desired activities caregivers are not participating in), QoL, parenting stress, perceived family outcomes, and social support. In addition to undertaking direct assessments of children's cognition and language, primary caregivers also reported on their child's adaptive behavior, social-emotional skills, and participation. Caregivers reporting fewer occupational gaps (i.e., ≤2 desired activities) were more likely to have Autistic children with no co-occurring conditions, who were older, and with better adaptive behaviors, social-emotional skills, and more frequent home and school participation, compared to caregivers reporting many gaps (i.e., ≥3 desired activities). Caregivers with fewer occupational gaps also reported improved QoL, parenting stress, social support, perceived community inclusiveness, and family outcomes. Logistic regression analysis identified child age, child adaptive behavior, social-emotional skills, home participation, and the caregivers' perceived family outcomes and QoL as important predictors of their occupational gaps. The findings demonstrate that caregiver participation in desired activities was associated with increased functional ability and independence of the child, as well as their perceived capacity to meet their child's needs. Supporting parents' sense of efficacy in meeting their children's needs and building their skills and knowledge will serve to improve both caregiver and child outcomes., (© 2024 The Author(s). Autism Research published by International Society for Autism Research and Wiley Periodicals LLC.)

Aim: To assess the protocol feasibility and intervention acceptability of a community-based, peer support diabetes prevention programme (DPP) for African-American (AA) grandmother caregivers at risk for diabetes., Materials and Methods: Grandmother caregivers were randomized in a 2:1 ratio to DPP (active comparator) or DPP plus HOPE (Healthy Outcomes through Peer Educators; intervention). DPP + HOPE incorporated support from a peer educator who met with participants in person or by telephone every week during the 1-year intervention. Outcomes included: (1) recruitment rates, outcome assessment, and participation adherence rates assessed quantitatively; and (2) acceptability of the programme assessed through end-of-programme focus groups., Results: We successfully consented and enrolled 78% (n = 35) of the 45 AA grandmothers screened for eligibility. Eighty percent of participants (aged 64.4 ± 5.7 years) were retained up to Week 48 (74% for DPP [n = 17] and 92% for DPP + HOPE [n = 11]). All grandmothers identified social support, neighbourhood safety, and access to grocery stores as influences on their health behaviours. At Month 12, the active comparator (DPP) group and the intervention group (DPP + HOPE) had a mean change in body weight from baseline of -3.5 ± 5.5 (-0.68, -6.29) kg and - 4.4 ± 5.7 (-0.59, -8.2) kg, respectively., Conclusions: This viable study met the aim of educating and equipping AA grandmothers with the practical and sustained support needed to work toward better health for themselves and their grandchildren, who may be at risk for diabetes. The intervention was both feasible and acceptable to participating grandmothers and their organizations., (© 2024 The Authors. Diabetes, Obesity and Metabolism published by John Wiley & Sons Ltd.)

Purpose: To explore the mediating role of trait anxious personality in the association between quality of life (QoL) and death anxiety (DA), as well as to test the moderating effect of social support in the mediation model., Methods: The Death Anxiety Scale, Quality of Life Scale, State-Trait Anxiety Scale, and Social Support Rating Scale were used to measure 588 family caregivers of advanced cancer patients. We then constructed a moderated mediation model., Results: The presence of QoL was negatively associated with DA (β =  - 0.67, p < 0.01). Trait anxious personality partially mediated the relationship between QoL and DA (indirect effect β =  - 0.08, p < 0.01). Social support moderated both the antecedent and subsequent segments of the mediating paths of "QoL → trait anxious personality → DA" and the direct relationship between QoL and DA. Among caregivers with a low level of social support, the mediating effect coefficient of trait anxious personality was higher at 0.25 (95% confidence interval (CI): 0.059-0.182), in contrast to caregivers with a high level of social support, where the mediating effect coefficient of trait anxious personality was 0.11 (95% CI: 0.029-0.072)., Conclusion: QoL is directly associated with an increased risk of DA and indirectly related to DA by increasing the risk of trait anxious personality among caregivers. Social support can moderate the mediating effect of trait anxious personality and the relationship between QoL and DA. The intervention strategy for preventing DA among caregivers who have encountered QoL reduction should focus on reducing trait anxious personality and social support., (© 2024. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

Background: People with learning disabilities are living longer. Despite government policy to encourage people to lead supported lives in their community, family carers often maintain support due to dissatisfaction with services. This can lead to people moving from the family home in a crisis., Objectives: (1) Find out what is known about health needs and resources for older people with learning disabilities (aged ≥ 40 years); (2) identify exemplars of good services for older people with learning disabilities; (3) explore service exemplars through ethnographic case studies; (4) evaluate support for older people with learning disabilities and their families through co-producing and testing future planning tools and (5) co-produce recommendations and resources., Design and Methods: Work package 1 rapid scoping reviews - three reviews focused on the health and social care needs of older people with learning disabilities and 'behaviours that challenge others', and family carers, and the co-ordination of support for this group. Work package 2 scoping and mapping exemplars of good practice - analysis of published service standards to assess excellence criteria, by mapping services, interviews ( n  = 30), survey ( n  = 9) and informal discussion with commissioners. Work package 3 ethnography of case studies of exemplar provision; independent supported living ( n  = 4); residential/nursing home ( n  = 2); day activities ( n  = 1), Shared Lives ( n  = 2). Fieldwork (20 days per model), interviews ( n  = 77) with older people with learning disabilities, family carers, support staff and commissioners. Work package 4 - co-producing and testing resources for older people with learning disabilities and their families involved interviews and focus groups with 36 people with learning disabilities, parents, and siblings, and experience-based co-design with 11 participants. Eight families evaluated the resources. Work package 5 - three stakeholder workshops co-produced service recommendations., Findings: The reviews confirmed an inadequate evidence base concerning the experiences and support of family carers and older people with learning disabilities and 'behaviours that challenge others'. Criteria of excellence were produced, and a shortlist of 15 services was identified for consideration in work package 3. The ethnographic work found that environmental, organisational and social factors were important, including supporting independence and choice about who people live with, matching staff to people, consistent relationships and adapting to ageing. Practices of institutionalisation were observed. In work package 4, we found that families were worried about the future and unsupported to explore options. 'Planning Ahead' cards and a booklet to record discussions were produced, and the evaluation was positively rated. Finally, formative discussion informed recommendations. Outputs include training packages, a carers' forum, a film, a podcast and academic papers., Conclusions: There is little focus on older people with learning disabilities and family carers. Services vary in their approach to planning for older-age support. Families are unsupported to plan, leaving people without choice. 'Behaviours that challenge others' was found to be unhelpful terminology. Recommendations: A new strategy is recommended for older people with learning disabilities and family carers that encompasses commissioning practices, professional input and peer learning, proactive support in ageing well and excellent service design., Limitations: The COVID-19 pandemic created recruitment challenges. Reliance on providers for recruitment resulted in a lack of diversity in work package 3. Families' plans, and therefore change, may be frustrated by insufficient service resources., Future Work: Given the lack of focus in this area, there is a range of future work to consider: experiences of older people with learning disabilities from diverse ethnic backgrounds; supporting people to age and die 'in place'; best practice regarding designing/commissioning services, including housing; the role of social workers; access to nature; accessing mainstream support; and evaluation of the 'Planning Ahead' cards., Trial Registration: This trial is registered as ISRCTN74264887., Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR129491) and is published in full in Health and Social Care Delivery Research ; Vol. 12, No. 16. See the NIHR Funding and Awards website for further award information.

Background: People with severe mental illness (SMI) experience higher rates and poorer outcomes of physical long-term conditions (LTCs). The management of SMI and LTCs is highly complex and many people with SMI rely on informal carers for support, which may lead to high levels of caregiver burden, and caregiver burnout. Caregiver burnout can result in poor health outcomes for informal carers and a reduction in the quality of care they are able to provide. Therefore, it is important to understand the caring experience to identify and address factors that contribute to burden and burnout., Methods: This paper reports a secondary qualitative analysis of semistructured interviews and focus groups conducted with informal carers of people who have coexisting SMI and LTCs. We recruited 12 informal carers in England between December 2018 and April 2019. The transcripts were coded and analysed thematically., Results: We identified two overarching themes and five subthemes. The themes included 'Fighting on all fronts: Mounting strain between demands and resources', which described the challenge of providing care in the context of coexisting SMI and LTCs, and 'Safekeeping: The necessity of chronic hypervigilance', which captured how informal carers' roles were defined by managing high-risk situations, leading to hypervigilance and paternalistic approaches to care., Conclusion: The experience of informal carers for people with SMI and coexisting LTCs is marked by limited access to support and the management of significant risk, which could contribute to high caregiver burden. Further primary research is needed to understand how the experiences of the caregiver role for people with SMI and LTCs influence caregiver burden., Patient or Public Contribution: Our PPI panel DIAMONDS Voice provided guidance on this study from conception, design and development of interview guides and recruitment materials to final write-up. DIAMONDS Voice consists of service users and carers who have experience of SMI and LTCs. Three carer members reviewed the final manuscript, and two are credited as authors., (© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)

Latinx families face unique barriers to accessing traditional youth mental health services and may instead rely on a wide range of supports to meet youth emotional or behavioral concerns. Previous studies have typically focused on patterns of utilization for discrete services, classified by setting, specialization, or level of care (e.g., specialty outpatient, inpatient, informal supports), yet little is known about how youth support services might be accessed in tandem. This analysis used data from the Pathways to Latinx Mental Health study - a national sample of Latinx caregivers (N = 598) from across the United States collected at the start of the coronavirus pandemic (i.e., May-June 2020) - to describe the broad network of available supports that are used by Latinx caregivers. Using exploratory network analysis, we found that the use of youth psychological counseling, telepsychology, and online support groups was highly influential on support service utilization in the broader network. Specifically, Latinx caregivers who used one or more of these services for their child were more likely to report utilizing other related sources of support. We also identified five support clusters within the larger network that were interconnected through specific sources of support (i.e., outpatient counseling, crisis, religious, informal, and non-specialty). Findings offer a foundational look at the complex system of youth supports available to Latinx caregivers, highlighting areas for future study, opportunities to advance the implementation of evidence-based interventions, and channels through which to disseminate information about available services., (© 2023 Family Process Institute.)

Purpose: Caregiver burden (CB) is typically self-assessed by caregivers. However, an emerging concept is assessment of CB by the recipients of care, i.e., the patient. The specific objectives are (1) to assess the level of agreement between care recipients' and caregivers' view on CB, across financial, physical, emotional, and social domains; (2) to explore two care recipient perspectives: their self-perceived burden (CR-SPB), and their interpretation of the caregiver's view (Proxy-CB)., Methods: Data were collected from 504 caregiver-care recipient dyads in the U.S. using an online Qualtrics panel. The survey assessed caregiver burden using CarerQol and newly developed items. The level of agreement between responses was quantified using weighted kappa (κ) coefficients for individual items and intraclass correlation coefficients (ICC) for index/summary scores., Results: The average age of caregivers was 49.2 years, and 62.7 years for care recipients. Dyads most commonly consisted of spouses/partners (34.5%); 68.3% lived together. Proxy-CB aligned more closely with caregiver's view, with moderate to substantial agreement across CB domains (from κ = 0.48 for emotional to κ = 0.66 for financial). In the same perspective, the CarerQol-7D Index showed moderate agreement (ICC = 0.58) and the summary score of CB items substantial agreement (ICC = 0.76). Care recipients generally overestimated  CB in the Proxy-CB perspective, while they underestimated it in the CR-SPB perspective., Conclusion: Results demonstrate there is a difference between perspectives. Strong agreement in Proxy-CB perspective suggests that care recipients can potentially substitute for caregivers depending on the domain. CR-SPB agrees less with caregivers and may provide complementary information., (© 2024. The Author(s), under exclusive licence to Springer Nature Switzerland AG.)

Background: Research to date has detailed numerous challenges in emergency department (ED) communication with persons living with dementia (PLWD) and their caregivers. However, little is known about communication experiences of individuals belonging to minoritized racial and ethnic groups, who are disproportionately impacted by dementia and less likely to be included in dementia research., Methods: We conducted semi-structured interviews with 29 caregivers of PLWD from two urban academic hospital EDs with distinct patient populations. The first site is an ED in the Northeast serving a majority White, English-speaking, and insured population. The second site is an ED in the South serving a majority Black and/or Hispanic, Spanish-speaking, and underinsured population. Interviews lasted an average of 25 min and were digitally recorded and transcribed. We used an inductive approach to analyze interview transcripts for dominant themes and compared themes between sites., Results: Our sample included caregivers of diverse racial and ethnic backgrounds. Caregivers cared for PLWD who spoke English, Spanish, Arabic, Chinese, and Vietnamese. We identified three themes. First, caregiver advocacy was central to experiences of ED communication, particularly when PLWD primarily spoke a non-English language. Second, routine care plans did not address what mattered most to participants and PLWD. Participants felt that care arose from protocols and did not address what mattered most to them. Third, White English-speaking caregivers in Site 1 more commonly expected ED staff to engage them in care decision-making than Black, Hispanic, Asian, and Middle Eastern caregivers in Site 2., Conclusion: Language barriers amplify the higher intensity care needed by PLWD in the ED. Strategies should be developed for communicating with PLWD and caregivers about what matters most in their ED care., (© 2024 The American Geriatrics Society.)

Background: The COVID-19 pandemic has created unprecedented stressors for caregivers due to social distancing requirements that simultaneously increased their responsibilities and reduced opportunities for social connection and support. This concurrent embedded mixed-methods study examined differences between caregivers and non-caregivers regarding the effects of social connectedness on perceived stress and explored challenges caregivers experienced related to social connectedness and perceived stress., Method: A national online survey containing forced-choice and free-response questions was administered between April and June 2020. The survey was distributed via social media advertisements and a crowdsourcing platform to eligible adult residents in the United States (US) fluent in either English or Spanish. Multivariable regression and thematic analysis were used to analyze the quantitative and qualitative data. Mixed-methods integration occurred during the data analysis, interpretation, and reporting phases., Results: The study sample comprised 1540 US adults (1275 non-caregivers, 265 caregivers; 65% women; 36% racial/ethnic minorities). Relative to non-caregivers, caregivers had lower levels of social connectedness and higher levels of perceived stress. Social connectedness was also inversely related to perceived stress for non-caregivers (p < 0.001) and slightly but not significantly positively related to perceived stress for caregivers. Qualitative findings showed caregivers experienced a variety of stressors including fear of COVID-19 exposure to their care recipients, disruption to usual care routines, and difficulty accessing healthcare services that may have contributed to decrements in social connectedness and higher levels of perceived stress., Conclusion: Findings suggest social connectedness may be beneficial for reducing perceived stress, but its impact can vary depending on individual circumstances. Overall, findings support the idea that caregivers are a particularly vulnerable sub-group of the population and may benefit from more targeted support and interventions., (© 2023. International Society of Behavioral Medicine.)

Purpose: This study explores the usability, usefulness and user experience of the Forward with Dementia website for people with dementia and family carers, and identifies strategies to improve web design for this population., Methods: The website was iteratively user-tested by 12 participants (five people with dementia, seven carers) using the Zoom platform. Data collection involved observations, semi-structured interviews and questionnaires. Integrative mixed-method data analysis was used, informed by inductive thematic qualitative analysis., Results: Users of Version 1 of the website experienced web functionality, navigation and legibility issues. Strategies for desirable web design were identified as simplifying functions, streamlining navigation and decluttering page layouts. Implementation of strategies produced improvements in usability, user experience and usefulness in Version 2, with mean System Usability Scale scores improving from 15 to 84, and mean task completion improving from 55% to 89%. The user journey for people with dementia and carers overlapped, but each group had their own unique needs in the context of web design., Conclusions: The interplay between a website's content, functionality, navigation and legibility can profoundly influence user perceptions of a website. Dementia-related websites play an important role in informing audiences of management strategies, service availability and planning for the progression of dementia. Findings of this study may assist in guiding future web development targeting this population.