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BACKGROUND: The pandemic rapidly expanded telemedicine, which has persisted as a widely available primary care modality. The uptake of telemedicine among people with dementia specifically in the primary care setting, who have more complex care needs but also benefit from more accessible primary care, is unknown. OBJECTIVE: Among people with dementia, assess uptake of telemedicine-based primary care in the post-pandemic period and determine associations with key socio-demographic characteristics. DESIGN: Retrospective observational study. SUBJECTS: People with dementia at UCSF and Kaiser Permanente Northern CA (KPNC) with at least one primary care encounter in pre- (3/1/2019-2/29/2020) or post-COVID (3/1/2021-2/28/2022) periods, post-COVID sample: N= 419 individuals (UCSF), N=18,037 (KPNC). MAIN MEASURES: Encounter modality: in-person, video telemedicine, or telephone telemedicine. Focal socio-demographic characteristics: age, limited English proficiency, socioeconomic status, driving distance to clinic, and caregiver at encounter. KEY RESULTS: There was a large increase in telemedicine among people with dementia in the post-pandemic period at both sites. At KPNC, those with only in-person primary care visits shrunk from 60.47% (pre) to 26.95% (post). At UCSF, the change was even greater: 98.99% to 35.08%. Across both sites, the only measure significantly associated with use of telemedicine was greater driving distance from home to clinic. At KPNC, those over age 90 were most likely to use telemedicine while patients with limited English proficiency and those with a caregiver at the encounter used telemedicine at lower levels. The relationships were similar at UCSF but not statistically significant. CONCLUSIONS: Telemedicine use is high for people with dementia in the primary care setting in the post-pandemic period. Those with longer drives to clinic and the oldest patients were most likely to use telemedicine, likely due to challenges traveling to appointments. Still, not all people with dementia used telemedicine equally-particularly those with limited English proficiency.

IntroductionPragmatic research studies that include diverse dyads of persons living with dementia (PLWD) and their family caregivers are rare.MethodsCommunity-dwelling dyads were recruited for a pragmatic clinical trial evaluating three approaches to dementia care. Four clinical trial sites used shared and site-specific recruitment strategies to enroll health system patients.ResultsElectronic health record (EHR) queries of patients with a diagnosis of dementia and engagement of their clinicians were the main recruitment strategies. A total of 2176 dyads were enrolled, with 80% recruited after the onset of the pandemic. PLWD had a mean age of 80.6 years (SD 8.5), 58.4% were women, and 8.8% were Hispanic/Latino, and 11.9% were Black/African American. Caregivers were mostly children of the PLWD (46.5%) or spouses/partners (45.2%), 75.8% were women, 9.4% were Hispanic/Latino, and 11.6% were Black/African American.DiscussionHealth systems can successfully enroll diverse dyads in a pragmatic clinical trial.

BACKGROUND: Approximately 7.5 million older adults are homebound, who have difficulty and/or need assistance to leave their homes. In this growing population, the prevalence of people living with dementia (PLWD) is approximately 50%. Current dementia care models in the USA were developed for traditional office-based primary care and have not been tailored to home-based primary care (HBPC) delivery models. Literature has shown that office-based collaborative interventions can improve caregiver outcomes including caregiver stress, well-being, and morbidity and patient outcomes including improved quality of life and reduced emergency department visits (Possin KL, Merrilees JJ, Dulaney S, Bonasera SJ, Chiong W, Lee K, JAMA Int Med 179:1658, 2019). To date, the evidence for HBPC dementia interventions is lacking. Though HBPC has demonstrated benefit in homebound older adults, there is limited literature on the effects of HBPC on persons living with dementia (Nguyen HQ, Vallejo JD, Macias M, Shiffman MG, Rosen R, Mowry V, J Am Geriatr Soc 70:1136-46, 2021). Our goal is to develop a HBPC-focused dementia care intervention that integrates the components of two previously developed dementia care models and test the feasibility of implementing it in HBPC practices to improve the quality of life and wellbeing of homebound PLWD and their caregivers. METHODS: We will first conduct qualitative focus groups at two HBPC practice sites, one in the Southeast and one in Hawaii in order to obtain preliminary feedback on the proposed intervention. At each site, there will be one focus group with caregivers of PLWD and another with HBPC clinicians and staff to help develop and refine our intervention. We will then conduct an open-pilot trial of the refined intervention at the two HBPC practices. A total of up to 25 patient/caregiver dyads will be recruited at each site (N = 50 total). Outcomes measured through pre-and-post assessments and exit interviews will include (a) feasibility for the caregiver to engage with and complete baseline assessments and access educational materials and community resources and (b) feasibility for the practice to identify potential caregivers/patients, assess eligible patient/caregiver dyads, use patient and caregiver assessments, recruit patient/caregiver dyads, recruit racial and ethnic minorities, use care modules, and engage with the tele-video case conference, (c) net promoter score, (d) acceptability of the intervention to caregivers and patients to participate in the intervention, (e) caregivers feeling heard and understood, and (f) caregiver well-being. DISCUSSION: Testing the feasibility and acceptability of the adapted intervention in these two HBPC practices will provide the basis for future testing and evaluation of a fully powered intervention for PLWD and their caregivers cared for in HBPC with the goal of disseminating high-quality and comprehensive dementia-care focused interventions into HBPC practices. TRIAL REGISTRATION: This trial was registered with ClinicalTrials.gov NCT05849259 in May 2023.

Introduction: The concept of privacy marks an astonishing gap in the discussion about care for people with dementia (PwD). In general, questions of privacy play an important role and attract much attention in the ethics of nursing care. Yet, when it comes to dementia care, there is hardly any systematic ethical debate on the topic at all. It almost seems as though PwD lost any plausible interest in privacy and no longer had a private sphere that needed to be considered or protected. However, this not only contradicts widespread moral intuitions but also ignores the views and needs of those affected. Arguments: This conceptual analysis sets out to explore the value of privacy for PwD. We first outline the origins and dimensions of the concept of privacy itself and point out problems and limitations in the context of dementia. Especially the prevalent liberal conceptions' dependence on the idea of individual autonomy poses considerable challenges to an adequate understanding of the moral significance of privacy for PwD. Therefore, we subsequently examine alternative ways of conceptualizing the value of privacy in the context of dementia care. Conclusion: We argue that autonomy-based concepts of privacy may still apply in the early stages of dementia. In the further course of the syndrome, however, the relevance of other normative aspects comes to the fore, especially respect for remaining personal preferences as well as objective criteria of dignity and well-being. Thus, we outline in a differentiated way how and to what extent privacy can be of normative importance even beyond the purview of autonomy and should consequently be considered in dementia care. [ABSTRACT FROM AUTHOR]

The purpose of this study was to investigate whether it is possible to practice dignified and drug-free dementia care in a nursing home context, and if so, under what conditions. Methods: The article is based on fieldwork and qualitative interviews with employees at a nursing home in Denmark called Dagmarsminde. The nursing home was strategically selected based on prior knowledge of the site's care philosophy. Main findings: The article illustrates how "agitated nursing home residents with late-stage dementia" regained their spark of life when being embraced by dignified and drug-free care practices. Our analyses show that the most important components of this care approach were a) normalization, b) validation, c) accountability of each care worker, and d) the ability to be radically present. This care approach entailed that the care workers in the nursing home under scrutiny, through resonance, were able to become aware of and meet the needs of the residents, even when these needs were communicated in subtle, non-verbal ways. [ABSTRACT FROM AUTHOR]

Non-pharmacological strategies are prioritized to manage dementia-related symptoms in nursing homes (NHs). A multiple-case study design, embedded within a pragmatic trial, examined NH staff perspectives of applying a team-based (TB) or problem-based dementia training program to resident care. A purposive sample of staff was recruited from 23 NHs to participate in one-on-one interviews, which were analyzed using a rapid qualitative approach. Both approaches yielded staff who were able to apply their training to resident care. Staff described similarities in communication strategies, family interactions, recognizing sources of behaviors, providing comfort, and ensuring resident safety. In addition, staff demonstrated increased self-efficacy when caring for residents. Differences emerged for team collaboration, engaging residents, and managing behaviors. Among TB staff, training impacted how staff cared for residents and increased teamwork. Leaders may want to consider the benefits of each approach as they deliberate on which dementia care training to provide to their staff. [ABSTRACT FROM AUTHOR]

AbstractObjectivesMethodResultsConclusionThis article features results of a qualitative research conducted with twenty-nine men and women responsible for Alzheimer’s cafés in Italy, on the topic of ethical issues in dementia care. The goal was to identify the sources of moral distress for caregivers, exploring some bottom-up solutions that have been implemented shared with others in informal settings.During the in-depth interviews participants shared about challenges and opportunities related to dementia care and ethics, informed by the symbolic interactionist approach to the theory of social representations.The analysis of interviews resulted in identification of six main themes, each with some sub-themes: awareness, personhood, social connectedness, isolation, access, and institutional dimension.The results pointed out the importance of culturally appropriate approach and advocacy for tackling ethical issues, especially in the light of morally wrong egregious abuse of persons with dementia (as related by participants), which can be classified as benefits trafficking, a form of human trafficking. [ABSTRACT FROM AUTHOR]

In low- and middle-income countries (LMICs), barriers such as low system readiness, contextual mismatches, and resource limitations impede effective implementation of evidence-based interventions. This commentary offers insights into overcoming these challenges with a case study of the PRISM project, designed to reduce behavioral and psychological symptoms of dementia in older adults living in Thailand. The case highlights how combining two evidence-based models - the Reducing Disability in Alzheimer's Disease clinical intervention and the Getting To Outcomes implementation science process enhances program success. Using interviews with stakeholders across various health system levels, we identify factors critical to successful program implementation: (1) integrating interventions into policy frameworks, (2) empowering local implementers, (3) fostering collaborative learning, and (4) adapting interventions to local contexts. The case demonstrates that building system readiness through local engagement and ownership is central to scaling up health programs in LMICs. This commentary's contribution lies in its emphasis on the role of implementation science as a vehicle for translating research into practice. It presents a practical, adaptive model for embedding interventions into routine health systems, thereby offering a pathway for successfully scaling up evidence-based programs in LMICs. Such findings provide lessons for overcoming barriers to implementation in resource-limited environments. [ABSTRACT FROM AUTHOR]

Dementia care management, an evidence-based care concept in Germany, optimizes care for people with dementia and their caregivers. Implemented by qualified professionals, it comprises intervention modules addressing treatment and care, medication management, and caregiver support. Positively evaluated in one federal state, it's recommended for nationwide integration into routine care. Since the infrastructure of the German healthcare system differs regionally, the concept underwent adaption for regional implementation in a participatory, iterative process. Five local healthcare experts as co-researchers tested and adjusted selected components of the concept in a pilot study. This trend analysis aims to assess the adapted concept for acceptance, appropriateness, and feasibility. A total of 89 intervention modules were tested over 18 weeks, and the co-researcher's assessment was gathered through an accompanying online survey. The participatory process itself was rated positively overall, but technical problems had a negative impact on the implementation and evaluation of the care concept. [ABSTRACT FROM AUTHOR]

Background Dementia is expected to increase more rapidly in low- and middle-income countries (LMIC) than in high-income countries (HIC) in the coming decades. Nevertheless, research on dementia care remains limited for LMIC. This study aims to fill this gap by investigating care needs and care receipt in 3 LMIC: China, Mexico, and India. Methods Using harmonized data from the Gateway to Global Aging Data in China, Mexico, and India and focusing on individuals aged 65 and older with cognitive impairment (N  = 15 118), we estimated the proportions of care needs related to difficulties with activities of daily living and instrumental activities of daily living, and care receipt. We then used logistic regressions to examine the association between caregiver availability and informal care receipt. Results We observed relatively similar patterns in care need measures across countries and over time. In contrast, the association between caregiver availability and informal care receipt showed some cross-country variations. Generally, living with family members was associated with a higher probability of receiving informal care in China and India. However, for Mexico, this association was only evident for men. Additionally, we found that the magnitude of the association between caregiver availability and informal care receipt varied with the care recipient's gender. Conclusions Although living with family members was generally associated with a higher likelihood of receiving informal care in China, Mexico, and India, there are differences in the association between caregiver availability and informal care receipt across countries and over time. [ABSTRACT FROM AUTHOR]

Aims: To explore the emotional wellbeing of dementia carers in the lead up to and during transition of a person living with dementia to a residential aged care facility. Design: An interpretative qualitative study. Methods: Semi‐structured interviews were conducted with informal carers of person living with dementia between February and June 2023. Data were analysed using an inductive thematic approach and resulted in three themes. Results: The majority of carers were adult children (n = 19) and six were wives. Carers lived across metropolitan (n = 20) and regional settings (n = 5) in the most populous state of Australia. Three themes were identified which were attributed to different aspects of the carer role: (1) Carer emotional journey as dementia progresses – impacted by knowledge and lack of support; (2) Questioning decision making–underpinned by knowledge and confidence; and (3) Challenges in re‐establishing identity – impacted by ongoing concerns. Conclusion: As dementia progresses carers of person living with dementia consistently reported gaps in knowledge including how to access support. Specifically, this study identified the need for more to be done to help carers to develop the skills needed for their role, including participation in care planning and identifying care preferences for the future. Nurses can play a key role in promoting referral to services that support carers. Findings offer practical solutions to ameliorate carer stress and promote shared decision making. Reporting Method: This research was guided by the Consolidated Criteria for Reporting Qualitative Research. [ABSTRACT FROM AUTHOR]

Gerontological interventions should address the various geriatric syndromes suffered by the elderly, such as neurodegenerative diseases. Therapeutic lying is an effective and humanizing strategy to deal with dementia, used by various disciplines in the social and healthcare fields. This intervention strategy is made up of all the different responses to reality that are given to a person with cognitive impairment. This study analyzes the validity of the Spanish adaptation of the Attitudes toward Lying to People with Dementia (ALPD) questionnaire, given to 253 social workers who directly and indirectly intervened with older people suffering from cognitive impairment in public and private centers in Spain during the year 2022. The results of the validity and reliability analyses support the psychometric quality of ALPD for use in Spanish social workers. The statistical results indicate a good fit of the bifactor model (person-focused and lie-focused) and show the questionnaire to be reliable, with adequate psychometric properties. The article concludes with a discussion of practical, formative, and ethical challenges for social work in the field of geriatric services. [ABSTRACT FROM AUTHOR]

Purpose: Supporting the relational worlds of people living with dementia, especially the spousal dyad, is a growing focus in dementia care as is advancing the therapeutic use of music in dementia care. This paper describes a mixed-methods, multi-phase, iterative research study designed to develop the Music Memory Makers (MMM) Duet System, a novel therapeutic music technology, that allows non-musicians to play a personalized repertoire of songs arranged as duets. Methods: Following a pilot phase to iteratively assess and refine the MMM Duet System for recreational and therapeutic purposes, multiple sources of data were used to investigate five older spousal dyads' experiences with the system, two couples living with dementia and three who were not. We assessed perceptions of task difficulty, joint agency, and enjoyment as well as therapeutic benefits associated with enhancing the spousal relationship and sense of couplehood. Results: Findings suggest playing meaningful songs together is an enjoyable interactive activity that prompts musical reminiscence, involves joint agency, and supports relationship continuity within a relational, positive approach to dementia care. All couples mastered the task, none evaluated it as "very challenging," and positive couple interactions were evoked, commonly before and after playing the duets. Conclusions: The MMM Duet System is recommended for further research and development as an innovative way to support couples living with dementia with commercial implications, and as a new music technology suitable for use as a research tool. IMPLICATIONS FOR REHABILITATION: Music making is an engaging, rewarding activity promoting social bonding and wellbeing that with technology innovation, can be extended to non-musicians and people with differing skills, abilities, and preferences. The MMM Duet System is a promising new music technology that supports the relationship of people living with dementia and their spousal caregivers by encouraging relationship continuity and sense of couplehood. Supporting caregivers enables people with dementia to remain longer in their homes and communities. Practical suggestions are offered to develop music technology suitable for use by older adults and people living with dementia, e.g., involving participants who live with dementia, assembling interdisciplinary research teams, adopting iterative, participant-focused approach. [ABSTRACT FROM AUTHOR]

Aims: To analyse the concept of eating experiences in people living with dementia. Design: Rodgers' evolutionary method of concept analysis was used as a framework for the paper. Data Sources: The literature was searched using electronic databases PubMed, Google Scholar, CINHAL, PsycInfo, Web of Science, Embase and Elsevier databases. These databases cover a variety of disciplines, including but not limited to nursing, medicine and occupational therapy. The relevant literature published from 1989 to April 2023 was thoroughly examined. Any quantitative or qualitative studies published in English focused on eating or dining experiences in people with dementia were included. Review Methods: Rodgers' evolutionary method for concept analysis was used. The attributes, antecedents, consequences and case examples of the concept were identified. Results: Twenty‐two articles met the inclusion criteria, identifying key attributes of self‐connection, the special journey of life and self‐interpretation. Antecedents, as framed by the socio‐ecological model, were categorized to represent intrapersonal (personal preferences, individual culture, mealtime routines), interpersonal (social interaction) and environmental (dining room environment, policies) factors. Consequences were divided into external (nutritional health, physical health and quality of life) and internal (personhood, autonomy and independence, dignity and feeling valued and mental well‐being) domains. Conclusion: A theoretical definition and conceptual model of eating experiences in people living with dementia was developed. The identified attributes, antecedents and consequences can be utilized in nursing education, research and intervention approaches. Impact: This article allows nurses and other healthcare professionals to better understand people living with dementia through the relationship between eating and interpersonal, intrapersonal and environmental aspects to develop personalized interventions and care strategies to achieve an optimal quality of life. Patient or Public Contribution: Not applicable. [ABSTRACT FROM AUTHOR]

Background: Dignity, an abstract and complex concept, is an essential part of humanity and an underlying guiding principle in healthcare. Previous literature indicates dignity is compromised in people with dementia (PwD), but those PwD maintain the capacity to live with dignity with appropriate external support. Alzheimer's disease and related dementias (ADRDs) lead to progressive functional decline and increased vulnerability and dependence, leading to heightened risks of PwD receiving inappropriate or insufficient care that diminishes dignity. Considering the increased disease prevalence and the continuously escalating costs of dementia care, establishing a productive value-based guideline may prevent suffering, maximize dignity, and thus promote quality of life (QoL). Aim: The goal of this project is to identify actionable targets for integrating dignity harmoniously and practically into care planning and management for PwD. Research Design: We conducted a concept analysis using Walker and Avant's eight-step process. A comprehensive literature search was conducted (PubMed and CINAHL) with the keywords "dignity," "dementia," "Alzheimer's disease," and "dementia care." Results: A total of 42 out of 4910 publications were included. The concept of dignity in PwD is operationalized as the promotion of worthiness and the accordance of respect that allows the presence and expression of a person's sense of self, regardless of physical, mental, or cognitive health. The concept has two subdimensions: absolute dignity which encompasses the inherent self and relative dignity characterized by its dynamic reflective nature. Worthiness and respect are the two main attributes, while autonomy is an underlying component of dignity. Specific antecedents of dignity in PwD are empowerment, non-maleficence, and adaptive environmental scaffolding. As a consequence of facilitating dignity in PwD, QoL may be enhanced. Conclusion: As a foundational and necessary humanistic value, incorporating dignity into dementia care can lead to efficient and effective care that optimizes QoL in PwD throughout their disease progression. [ABSTRACT FROM AUTHOR]

Currently, in the United States, there is no legal obligation for medical professionals or civil courts to uphold patients' Advance Directives (ADs) regarding end-of-life care. The applicability and standing of ADs prepared by Alzheimer's patients is a persistent issue in bioethics. Those who argue against giving ADs full status take two main approaches: (1) appealing to beneficence on behalf of the Alzheimer's patient and (2) claiming that there is no longer any personal equivalence between the AD's creator and the subject of the AD. In this paper, I present profound arguments against both approaches. Firstly, I argue that the principle of beneficence cannot apply in the case of Alzheimer's patients, and, secondly, that the moral and legal authority of the AD need not depend on strict equivalence of personal identity. I conclude by arguing that valid ADs protect the dignity and autonomy of Alzheimer's patients and that, therefore, there are moral obligations to uphold ADs which should be reflected in public policy and legislation. [ABSTRACT FROM AUTHOR]

Objectives: This study aims to examine caregivers' perspectives on and justifications for lying when caring for people with dementia. Method: The data consisted of interviews and observations of discussions among family and professional caregivers with various educational backgrounds. Thematic analysis was applied to identify key themes related to caregivers' perspectives on lying. Results: The study revealed that lies were frequently employed by caregivers and were seen as effective tools in the caregivers' toolkit. These practices were often labelled 'white lies' and were rationalised based on their potential to enhance the well-being of people with dementia or to facilitate smooth interactions. The potential negative consequences of lying were also acknowledged. In addition, some caregivers suggested that the practice of 'stepping into the person with dementia's reality' might not constitute lying. Conclusion: The findings suggest that the caregivers perceived lying to be a legitimate strategy when caring for people with dementia; surprisingly, some did not recognize their practices as constituting acts of lying at all. This finding carries significant clinical relevance, as the varying perceptions of lying underscore the potential need for a consistent approach to deception. Addressing this complexity can lead to more ethical caregiving practices, ultimately enhancing the quality of care provided to people with dementia. [ABSTRACT FROM AUTHOR]

Background: Caring for a person with dementia can be a challenging experience, often associated with chronic stress and a heavy burden on family caregivers. Dementia also impacts the relationship between the caregiver and the person with dementia. The quality of this relationship is, in turn, an important factor influencing the well-being of both dyad members. The psychoeducational intervention "Learning to feel better... and help better" has shown positive results regarding family caregivers' subjective burden, psychological distress, and self-efficacy. However, relationship quality has not been addressed in the context of this intervention. Methods: A longitudinal constructivist grounded theory approach was used to explore relationship quality as perceived by caregivers, possible changes and intervention components facilitating or preventing such changes. Three qualitative, semi-structured interviews (before, during and after the intervention) were performed with 13 family caregivers from three different intervention groups. The resulting 39 interviews were analysed regarding individual caregiver trajectories, per time point for all caregivers and regarding specific caregiver subgroups. Findings: A model focusing on sustaining relationship quality in dementia was developed. It shows strategies that family caregivers develop and apply to facilitate positive interactions and feelings of connectedness with their family members with dementia. It also indicates that mastering such strategies requires reflective skills based on specific knowledge of dementia and coping strategies, which can be enhanced through active skills training, in which caregivers are guided to work on their individual stressful situations. Factors hampering change included difficulties in accepting dementia-related changes. Conclusion: Findings suggest that psychoeducation, with active skills training based on caregivers' current daily life situations, providing systematic procedures to handle daily challenges and specific knowledge about the impact of the disease, could support them in developing and applying supportive strategies to sustain or improve their relationship to their family member with dementia. [ABSTRACT FROM AUTHOR]

Background: Nurses' competencies are crucial in providing effective dementia care in healthcare settings for older people. Understanding nurses' current knowledge, attitudes and confidence in this area is essential for developing education programmes for healthcare professionals to improve patient care. The purpose of this study was to assess the knowledge, attitudes and confidence related to providing dementia care among nurses practicing in geriatric hospital wards and nursing homes in Hanoi, Vietnam. Methods: A total of 269 out of 313 (response rate was 86%) full‐time nurses working at six geriatric wards in hospitals and nursing homes in Hanoi were surveyed using three self‐administered questionnaires: the Dementia Knowledge Assessment Scale (DKAS), Dementia Attitude Scale (DAS) and the Confidence in Dementia Scale (CODE). Multiple regression models were constructed to identify factors associated with dementia care knowledge, attitudes and confidence. Results: The overall mean scores of nurse's knowledge, attitudes and confidence were 28.1 ± 8.0, 102.1 ± 13.4 and 28.3 ± 6.4, respectively. A positive correlation was reported between the knowledge and attitude scores and between the attitudes and confidence scores. Greater seniority (β: 0.29; 95% CI: 0.03–0.56) and having learned information through colleagues or experts (β: 3.02; 95% CI: 0.88–5.16) were associated with better dementia knowledge. A higher level of dementia training desirability was associated with increased knowledge (β: 0.74; 95% CI: 0.28–1.20) and favourable attitudes (β: 0.94; 95% CI: 0.15–1.74), whereas frequent exposure to dementia cases was associated with higher confidence (β: 3.56; 95% CI: 1.39–5.73) and more favourable attitudes (β: 3.96; 95% CI: 0.27–7.66). Conclusion: Our study highlights deficits in knowledge, low levels of social comfort in nurses' attitudes towards people with dementia and a lack of confidence in providing effective care among nurses practicing in healthcare settings for older adults in Hanoi, Vietnam. With the ageing of the population and with increasing numbers of persons living with dementia, our findings suggest the importance of improving the training of nurses to specifically address these deficits. Implications for Practice: Multidisciplinary consultation meetings need to be encouraged in the healthcare workplace setting as well as ensuring the presence of qualified counsellors for care teams working with older adults in non‐hospital settings. Training about non‐cognitive symptoms of dementia and demonstrating effective verbal and non‐verbal communication skills is critical and should be integrated into nurse's educational training. [ABSTRACT FROM AUTHOR]

Background: Dementia's increasing prevalence, particularly among the ageing population, highlights the urgent need for specialised care. Nurses play a critical role, but often lack sufficient training, leading to low confidence in dementia care. The Dementia Education Programme (DEP) was launched to address this, offering a multi-level curriculum for student nurses. Aims: This paper presents a protocol for evaluating the DEP for nursing students. This study aims to assess the programme's impact on students' knowledge, attitudes and confidence while exploring the mechanisms influencing the programme's implementation and effectiveness. Methods: The protocol employs a dual-fold evaluation, incorporating outcomes and process evaluation. The study uses a mixed-methods strategy, specifically a sequential explanatory design. Quantitative data are gathered longitudinally at four time points using validated instruments to assess knowledge, attitudes and confidence. Based on the results of the quantitative analysis, qualitative data is then collected through interviews and detailed field notes. Results: The DEP is described in detail, emphasising essential elements and underpinning theories. The protocol addresses ethical considerations as well as possible strengths and weaknesses of the study. Conclusions: By combining quantitative and qualitative methods, the research aims to provide a comprehensive evaluation, informing future educational practices and policy development in dementia care. [ABSTRACT FROM AUTHOR]

To assess the awareness and coping skills of the informal and formal caregivers of people living with dementia (PLWD). Dementia is a condition, which leads to memory loss and gradual deterioration of cognitive abilities in the affected person. The lack of awareness regarding the care of people with dementia and the caregivers’ poor coping strategies can negatively impact caregivers’ experiences.

Inequities with regard to brain health, economic costs, and the evidence base for dementia care continue. Achieving health equity in dementia care requires rigorous efforts that ensure disproportionately affected populations participate fully in-and benefit from-clinical research. Embedding-proven interventions under real-world conditions and within existing healthcare systems have the potential to examine the effectiveness of an intervention, improve dementia care, and leverage the use of existing resources. Developing embedded pragmatic controlled trials (ePCT) research designs for nonpharmacological dementia care interventions involves a plethora of a priori assumptions and decisions. Although frameworks exist to determine whether interventions are ready for ePCT, there is no heuristic to assess health equity-readiness. We discuss health equity considerations, case examples, and research strategies across ePCT study domains of evidence, risk, and alignment. Future discussions regarding health equity considerations across other domains are needed.

Summary: Background and aim: People with dementia, and particularly those living in care homes are at risk of suboptimal hydration and dehydration. Individual, contextual and staffing factors affect drinking behaviour in this population, hence multicomponent hydration care interventions have been promoted. The aim was to assess the feasibility and acceptability of a multicomponent Think Drink intervention for supporting hydration for people living with dementia in English care homes. Methods: A cluster randomised controlled feasibility study compared 6 intervention care homes and 5 control homes, over 3-months. Data (fluid intake; admission to hospital/dehydration; falls; laxative use; urinary tract infection and upper respiratory tract infection) was collected from 50 residents living with dementia in the intervention group and 37 control group pre and post intervention. Post intervention, 45 care home staff took part in 9 individual and 17 small group interviews. Results: Think Drink was feasible and acceptable to participating care home staff. The findings highlighted how Think Drink changed staff knowledge of hydration requirements and new hydration practices were implemented in care homes. No significant positive change in fluid intake was found in the intervention group in terms of mean and median fluid intake in previous seven days, and proportion of population achieving an intake greater than 1,600 mls per day. This could be attributed to improvement in recording fluid intake following the intervention. Conclusions: Whilst Think Drink is acceptable to care home staff further research is required to address methodological issues in assessing efficacy in supporting fluid intake.

AbstractObjectivesMethodResultsConclusionBased on the Caregiving Stress Theory and Cognitive Theory of Stress and Coping, this study examined whether increase in caregiving stressors had an impact on subsequent increase in different forms of elder abuse. Additionally, this study evaluated how these relationships were influenced by caregiver (CG) coping strategies.A group of 800 Chinese primary family CGs and their care recipients (CRs) with mild cognitive impairment or mild-to-moderate dementia were analyzed. Participatory dyads were assessed and followed for 2 years. Structural Equation Models were used to test the associations among caregiving stressors, CG coping strategies, and elder abuse.Increase in caregiving stressors (ie CR decreased cognitive function, neuropsychiatric symptoms, and functional impairment) significantly increased the level of subsequent physical abuse, psychological abuse, and neglect. In addition, the associations between caregiving stressors and different forms of elder abuse as stated above was mediated by CG dysfunctional coping strategies.This study highlights the varying impact of caregiving stressors on different types of elder abuse and emphasizes the role of CG coping strategies in mediating these relationships. The findings provide valuable insights for the development of intervention protocols targeting both caregiving stressors and CG coping strategies to prevent elder abuse. [ABSTRACT FROM AUTHOR]

ABSTRACT Aim Design Methods Results Conclusion Impact Reporting Method Patient or Public Contribution To explore the stakeholders' perspectives and develop a conceptual framework for promotion strategies to implement the iSupport‐based intervention for family caregivers of people with dementia.A descriptive qualitative design was adopted.Semi‐structured interviews were conducted with 49 stakeholders of people with dementia from July to December 2023. The Consolidated Framework for Implementation Research was applied to guide the development of the interview guide, data collection and analysis. Directed content analysis was employed to identify facilitators and barriers, with data analysed based on the framework and the established its codebook. These findings were then summarised into a conceptual framework of critical components.The identified 16 barriers and 28 facilitators were distributed across all Consolidated Framework for Implementation Research domains. All facilitators and barriers were integrated into a conceptual framework guiding the implementation of iSupport. This four‐tier, eight‐component conceptual framework guides the global promotion of the web‐based dementia care model, covering state, society, hospitals, individuals and strategies. The components included comprehensive and balanced national medical guidelines, a friendly social culture, adequate hospital collaboration, cooperative healthcare workers, responsible family caregivers, a comprehensive intervention system, appropriate learning content and digital health support.The ‘iSupport for Dementia’ program is seen positively for its potential to improve dementia care by providing mental and technical support to family caregivers. Successful implementation requires addressing barriers, enhancing facilitators and adapting to China's conditions and policies. Mobilising local healthcare resources and gaining stakeholder recognition is crucial. This approach may help develop a localised version of iSupport that suits the needs and habits of Chinese family caregivers, with the potential for broader dissemination.The ‘iSupport for Dementia’ program could greatly improve dementia care in China by addressing barriers and utilising facilitators. This study offers critical insights for future policy development and effective implementation strategies.Adherence to the COREQ guidelines for reporting qualitative research was maintained.No patient or public contribution. [ABSTRACT FROM AUTHOR]

Despite the extensive literature on Christian and Muslim perspectives on dementia care, there has been an absence of scholarly research on dementia care from a Buddhist perspective. What appears to be largely missing from this discourse is the potential of incorporating traditional Buddhist beliefs and practices as part of a comprehensive approach to contemplative, spiritual caregiving for people living with dementia. A multi-faith approach to dementia care is necessary to truly appreciate the diverse spiritual/religious needs of individuals with this condition. Contemplative care informed by Buddhist ethics, beliefs, and practices is an approach that deserves further exploration. For chaplains and healthcare professionals who identify themselves as Buddhists, it is important to develop care strategies that are congruent with their spiritual and cultural beliefs to effectively support the well-being of individuals living with dementia. [ABSTRACT FROM AUTHOR]

Worldwide, there are approximately 10 million new cases of dementia reported each year. Due to impairments in cognitive functioning such as loss of memory, linguistic abilities, and problem-solving skills, persons living with dementia (PLWDs) may face challenges in accomplishing activities of daily living (ADLs). Socially assistive robotics (SAR) holds promise as an effective tool to assist PLWDs with their ADLs; however, developing a powerful, reliable SAR requires a robust dataset of PLWDs performing ADLs to ensure the efficacy and reliability of the SAR. In this paper, we present the development of a teleoperated robotic platform using a humanoid social robot. This platform provided instructions to perform ten Performance Assessment of Self-care Skills (PASS) tasks, while multimodal sensors were employed to collect the individual's physiological signals, behaviors, and interactions with the robot. We conducted a preliminary study to investigate the acceptability, user experience, and feasibility of the platform in a simulated home environment with five young cognitively normal individuals. Participants' experiences and satisfaction with the platform were evaluated through a questionnaire. The results demonstrate the capability of the robot administering PASS tasks. However, one limitation of the current platform is the low efficiency of controlling the robot to move in the Smart Home. Our next step is to implement navigational abilities in the robot and then conduct the experiments with a large cohort of PLWDs to generate our multimodal dataset. This work aims to contribute significantly towards the development of a powerful, reliable, and trustworthy SAR to help PLWDs with their ADLs. [ABSTRACT FROM AUTHOR]

AbstractOne factor leading to compromised Quality of Life (QoL) for people with dementia in long-term care settings is the significant barriers they face in accessing experiences beyond their physical premises. Although, in recent years, research within HCI has investigated the use of Virtual Reality (VR) in providing enriched experiences for people with dementia, few studies have looked into the practical issues relating to integrating and deploying VR into care settings and how in-depth understanding of such issues can inspire VR design for dementia care. Considering the perspective of key stakeholders, we demonstrate VR’s potential to create a rich conversation space with family members, preserve the identity and personhood of people with dementia through VR, and consider organisational issues of VR deployment in care settings. As such, this paper contributes to the HCI research community with future design directions to enhance the deployment and adoption of VR in dementia care settings. [ABSTRACT FROM AUTHOR]

Objectives: The primary aim of this pragmatic stepped‐wedge cluster RCT was to determine the efficacy of a co‐designed dementia specialist training program (the PITCH program) for home care workers (HCWs) to improve their confidence and knowledge when providing care for clients living with dementia. Methods: HCWs who provided care to clients with dementia were recruited from seven home care service provider organisations in Australia between July 2019 and May 2022, and randomised into one of 18 clusters. The primary outcome was HCW's sense of self‐competence in providing care services to people living with dementia at 6 months post PITCH training measured by the Sense of Competence in Dementia Care Staff (SCIDS) Scale. Results: Two hundred and thirteen HCWS completed baseline assessment and almost half (48.4%) completed all three study assessments. HCWs in clusters that received PITCH training had significantly higher sense of competence (measured by SCIDS) than those who had not received PITCH training. Post hoc analysis revealed that face‐to‐face PITCH training consistently resulted in improvements in the HCWs sense of competence, dementia attitudes and knowledge when compared to online training and when compared to no training. PITCH training had no effect on the sense of strain HCWs felt in delivering dementia care. Conclusions: Given the majority of care for people living with dementia is provided at home by family carers supported by HCWs, it is essential that HCWs receive training that improves their skills in dementia care. This study is an important step towards better care at home for people living with dementia. [ABSTRACT FROM AUTHOR]

In dementia care, the concept of dignity has garnered substantial attention from both researchers and policymakers. However, the concept often remains vague and open to interpretation, potentially leading to misunderstandings and suboptimal care for people with dementia. As healthcare professionals occupy a critical role in upholding dignity, exploring their viewpoints on this complex concept is paramount. In this study, we explore Danish healthcare professionals' views on the dignity of people with dementia and discuss these perspectives against existing theoretical accounts. We employed thematic analysis of data collected during facilitated discussions with a total of 99 healthcare professionals, including nurses and healthcare workers, during which we posed the question, "What is dignity to you?" and documented their perspectives. Through a systematic process of data coding and interpretation, we identified recurring patterns in their responses. This approach allowed us to uncover the depth and complexity of their viewpoints, providing valuable insights into the multifaceted nature of dignity as perceived by healthcare professionals. Our findings revealed that healthcare professionals possessed a nuanced understanding of dignity, recognizing both a subjective element and a universal aspect applicable to all individuals, aligning with theoretical interpretations. However, conceptual ambiguity remained a challenge. [ABSTRACT FROM AUTHOR]

Aim: Digital platforms such as YouTube are popular sources of health-related information. Although there are studies evaluating the quality of different online medical content, studies focusing on the quality of dementia-related content are limited. This study aimed to investigate the quality of YouTube videos related to dementia patient care. Material and Methods: Using the term "Dementia care" on the YouTube platform, 100 English videos that met the inclusion criteria were identified and analyzed. In addition to video popularity measurements, to evaluate content quality, the global quality scale (GQS), modified DISCERN scale, Journal of the American Medical Association (JAMA) quality scale, and the patient education materials assessment tool for audio/visual materials (PEMAT-A/V) are used. Results: It was observed that most of the videos were uploaded by non-academic health institutions (36%) and health professionals (23%). When the content of the videos was evaluated, it was determined that general care strategies were the most common content with 52%. Scores indicating high levels of reliability and accuracy were determined on all applied content quality scales. Videos sourced from academic healthcare institutions were found to have the highest scores on content quality scales. In correlation analyses, video metrics such as duration, view ratio, number of comments, and video power index values were positively correlated with content quality scores. Conclusion: Videos about dementia patient care on YouTube generally exhibit high popularity and content quality. Individuals seeking information about dementia care on online platforms should be directed to videos uploaded by healthcare institutions. [ABSTRACT FROM AUTHOR]

Background: Age‐friendly care, addressing what matters most, medications, mentation, and mobility, is a successful model for improving older adult care. We describe the initial outcomes of age‐friendly care implementation in five primary care clinics in an academic health system. Methods: In partnership with a regional quality improvement (QI) organization, we used practice facilitation to implement age‐friendly care from July 2020 to June 2023. Clinic workflows and electronic health record (EHR) templates were modified to capture six QI measures for patients ≥65 years:Documenting what matters most to patientsAdvance care planning (ACP)Annual cognitive screeningCaregiver referral to dementia community resourcesFall‐risk screeningCo‐prescription of opioid and sedative‐hypnotic drugs Providers were alerted if patients had positive screens and given support tools for clinical decision‐making. QI measures from January–June 2023 were compared to the year prior to implementation. Providers and staff were interviewed about implementation barriers and facilitators. Results: All six measures improved in Geriatrics and and other clinics showed improvement in ACP and cognitive screening. All clinics had high fall‐risk screening rates (≥85%). The least improved measure was co‐prescription of opioids and sedative‐hypnotics with co‐prescription rates ranging from 7% to 39%. Implementation hinged on leadership prioritization, practice facilitator guidance, clinical team buy‐in, EHR functionality, and clinical performance review. Three clinics received Age‐Friendly Health System recognition. Conclusions: A QI approach using practice facilitation and EHR templates improved some but not all age‐friendly care measures. Future interventions will focus on training in high‐risk medication tapering and elicitation of health goals. See related editorial by Lauren J Gleason and Katherine Thompson. [ABSTRACT FROM AUTHOR]

Background and Objectives Few proven dementia-care programs are integrated into community-based agencies. We report on the acceptability and effectiveness of an evidence-based program, Care of People in their Environment (COPE), delivered by community-based agency staff. Research Design and Methods Pretest/post-test design with 3 data points (baseline, 3-month program completion, 6-month follow-up). COPE was delivered by 6 occupational therapists and 4 social workers at 2 agency sites with people living with dementia and caregivers. Staff assessed the interests and abilities of people living with dementia, home safety, caregiver challenges, and readiness to learn strategies. Staff provided dementia education, stress reduction, and nonpharmacological techniques tailored to caregiver-identified challenges. Acceptability (3- and 6-months), included completed sessions, upset with and confidence managing care challenges, strategies used, and program satisfaction. Effectiveness (3- and 6-months) included people living with dementia's health events (falls, emergency room visits, hospitalizations, and 911 calls), rehospitalization risk and functional dependence; and caregiver well-being and readiness. Benefits by in-person (n  = 188) versus virtual/hybrid (n  = 46) delivery due to Coronavirus Disease-2019 were evaluated. Results Of 843 dyads screened, 271 (32.1%) enrolled, 246 (90.8%) completed COPE, and 234 (95.1%) completed ≥1 follow-up. Regarding acceptability, caregivers completed about 8 sessions, reported improved confidence and upset (p  < .001), most implemented strategies 3-months (72.8%) and 6-months (83.5%), and expressed high program satisfaction. For effectiveness, compared to baseline, odds of people living with dementia's health events were lower including rehospitalization risk, although functional dependence increased; caregiver well-being (3-, 6-months, p  < .001) and readiness (3-months, p  < .01) improved. Outcomes did not differ by delivery mode. Discussion and Implications Acceptability and effectiveness were strong. COPE resulted in tangible improvements for families regardless of delivery mode. [ABSTRACT FROM AUTHOR]

Aim: To develop and validate a scale for measuring professional caregivers' ethical self-efficacy in dementia care. Background: Professional caregivers of people with dementia make ethical decisions on a day-to-day basis, and it is important that they feel confident when doing so. Moreover, confidence, or self-efficacy, influences caregivers' behaviour and well-being and may be a predictor of competence. However, there is no scale for measuring ethical self-efficacy. This study aims to fill this gap. Methods: This study concerns the development and prima facie validation of the Dementia-Specific Ethical Self-Efficacy (DemESE) scale. During development, we identified dementia-specific ethical principles and generated items representing ethical conflicts of principles. In the subsequent validation, we administered the scale to experts and professional caregivers in dementia care. We assessed the relevance of the scale using a content validity index and tested validity and reliability using Cronbach's alpha. To further enhance validity, we compared the scale with analogous self-efficacy scales using Pearson's correlation coefficient. Results: The quantitative testing of DemESE revealed that the scale exhibited acceptable levels of internal consistency and reliability. This finding was supported by Cronbach's alpha. In addition, the content validity index and Pearson correlation coefficient provided evidence of the scale's relevance and validity. Conclusion: The results suggest that DemESE is a promising tool for assessing professional caregivers' ethical self-efficacy in dementia care and may be used to measure ethical self-efficacy – that is, confidence in ethical decision-making in dementia care. [ABSTRACT FROM AUTHOR]

Objective: The main aim of this study was to evaluate the feasibility and acceptability of using a GPS tracker to mitigate the risks associated with wandering for people with dementia and those caring for them and further evaluate the impact of trackers in delaying 24-hour care and the potential for reducing the involvement of support services, such as the police, in locating patients. Methods: We recruited forty-five wearers-carers dyads, and a GPS tracker was issued to each participant. Dyads completed pre-and post-outcome questionnaires after six months, and a use-log of experiences was maintained through monthly monitoring calls. At six months, focus groups were conducted with 14 dyads where they shared ideas and learning. Data analyses were performed on outcome questionnaires, use-log analysis, and focus groups discussion. Results: A 24% (N = 14) attrition rate was recorded, with 76% (N = 34) of the participants completing pre- and post-outcome questionnaires, of which 41% (N = 14) attended four focus group meetings. Participants reported enhanced independence for wearers as fewer restrictions were placed on their movements, peace of mind and reduced burden for the carers with less need to involve police or social services, and delays in 24-hour care. Conclusion: The results supported the feasibility of routine implementation of GPS trackers in dementia care with clear guidance, monitoring and support to family carers on safe use. This could delay admission into 24-hour care as wearers and carers have a greater sense of safety and are better connected should help be required. Studies with larger sample sizes, diverse participants and health economic analysis are needed to develop the evidence base further ahead of the routine implementation of GPS trackers in health and social care services. [ABSTRACT FROM AUTHOR]

Norwegian municipalities require increasing the number of care places. The main challenge for the municipalities is to obtain enough high-quality and suitable residential facilities. As buildings are often inflexible structures, they will impact their daily lives for decades. The question is whether the environment can support and promote health for the residents. These concepts have been planned over the last 10 years and built over the past three years. They were inspired by a similar concept in Hoegeweyk, the Netherlands, supported by a state-of-the-art report based on relevant research published in SINTEF 2015. This knowledge has been translated into three concepts (two nursing homes and one care housing) in three different communities in Norway. A case study has been conducted to examine the implementation of these new concepts. The primary questions posed include: Do these concepts operate as intended? What have been the experiences of the staff, residents, and relatives regarding the solutions? How was the process, from idea to construction, and how was the care concept implemented? We are exploring whether this provides health-promoting experiences. We conducted in-depth interviews to gather data and analyzed the buildings, care concepts and architectural plans. The physical solutions and service models in our study have shown to strongly influence each other, leading to promising outcomes. The fact that the residents can move around in a sheltered, nice outdoor area inspires them to walk and gives them a feeling of freedom and contact with nature. Smaller groups provide an experience of domesticity and strengthen person-centered care. Other citizens are invited to use the common spaces in the buildings, such as children from kindergarten, a dancing group, a quire, etc. Bringing the outside world in, increased mobility, daylight, and fresh air seems to support health. These positive outcomes underscore the potential of our health-promoting housing and care concepts for the elderly with dementia. [ABSTRACT FROM AUTHOR]

IntroductionThe concept of privacy marks an astonishing gap in the discussion about care for people with dementia (PwD). In general, questions of privacy play an important role and attract much attention in the ethics of nursing care. Yet, when it comes to dementia care, there is hardly any systematic ethical debate on the topic at all. It almost seems as though PwD lost any plausible interest in privacy and no longer had a private sphere that needed to be considered or protected. However, this not only contradicts widespread moral intuitions but also ignores the views and needs of those affected.ArgumentsThis conceptual analysis sets out to explore the value of privacy for PwD. We first outline the origins and dimensions of the concept of privacy itself and point out problems and limitations in the context of dementia. Especially the prevalent liberal conceptions’ dependence on the idea of individual autonomy poses considerable challenges to an adequate understanding of the moral significance of privacy for PwD. Therefore, we subsequently examine alternative ways of conceptualizing the value of privacy in the context of dementia care.ConclusionWe argue that autonomy-based concepts of privacy may still apply in the early stages of dementia. In the further course of the syndrome, however, the relevance of other normative aspects comes to the fore, especially respect for remaining personal preferences as well as objective criteria of dignity and well-being. Thus, we outline in a differentiated way how and to what extent privacy can be of normative importance even beyond the purview of autonomy and should consequently be considered in dementia care.

Marianna Tsatali,1– 3 Atena Gaspar De Almeida Santos,4 Marina Makri,1,5 Roger Tarandath Santokhie,6 Licia Boccaletti,7 Ioana Caciula,8 Rodica Caciula,8 Giusy Trogu,7 Magda Tsolaki,1,9 Karl Johan Johansen6 1Greek Alzheimer Association and Related Disorders, Thessaloniki, Greece; 2Network Aging Research, Heidelberg University, Heidelberg, Germany; 3Department of Psychology, School of Humanities and Social Sciences, University of Western Macedonia, Kozani, Greece; 4Association AFECT from Iasi, Iasi, Romania; 5Department of Neurology, Faculty of Health Sciences, School of Medicine, Aristotle University of Thessaloniki, Thessaloniki, Greece; 6Kompetansesenter for brukererfaring og tjenesteutvikling, KBT, Trondheim, Norway; 7Anziani e non solo soc. coop. soc., Carpi, Italy; 8Asociatia Habilitas - Centru de Resurse si Formare Profesionala, Bucharest, Romania; 9Center for Interdisciplinary Research and Innovation, Laboratory of Neurodegenerative Diseases, Aristotle, University of Thessaloniki (CIRI-Auth), Thessaloniki, GreeceCorrespondence: Marianna Tsatali, Email mtsatali@yahoo.grAim: Peer Support Workers (PSW) as an Innovative Force in Advocacy in Dementia Care (PIA) project aimed to create sustainable and competency-enhancing services for people with dementia by finding new ways to involve former as well as current caregivers in dementia services and, therefore, provide their valuable perspective in dementia care and daily practice.Participants and Methods: In order to achieve the aforementioned goals, the first step consisted in mapping the situation existing in the partners’ countries, respectively, Norway, Greece, Italy, and Romania. Subsequently, specific and well-structured training material was created with the purpose of recruiting and engaging PSW, in order to contribute to dementia services. The training material was then transferred to a digital platform addressed to PSW, people living with dementia (PwD), caregivers, and health professionals.Results: The PIA project proposed the introduction of PSW in dementia care, establishing a close collaboration across the contributing countries, and trained a total of fifty potential PSW. Each country identified a specific role and function of PSW in dementia practice, according to their national particulars. The training seminars and videos proposed by the PIA project are presented in the current study and therefore helped to the distribution of significant information about the contribution of (potential) PSW in dementia care. All the results were uploaded on the platform designed to increase communication and collaboration across health professionals as well as caregivers.Conclusion: The PIA project developed and designed training materials and methodologies for establishing PSW in dementia care in Norway, Greece, Italy, and Romania. PIA aims at introducing PSW in the healthcare system of the aforementioned countries, whereas future studies will elaborate on novel ways to measure the efficacy of being a PSW, as well as the benefits to stakeholders.Keywords: dementia care, dementia caregivers, peer support workers, training material

Abstract Background The majority of persons with dementia in Sweden reside in their own homes with support from family members. Approximately, 12% of persons with dementia have immigrant background. Within the next 20 years, the number of persons with dementia who are non-ethnic Swedes is said to double. Family caregivers with immigrant backgrounds are noted to receive less support in the community than ethnic Swedes and rate their health status lower than ethnic Swedish peers. The Swedish National Board of Health and Welfare have highlighted the importance of follow-up support for family caregivers with immigrant backgrounds as there is a recognized gap in research and available information tailored to meet the needs of this group. Purpose of the study The purpose of the study is to test effectiveness of an mHealth based intervention through which community social workers can improve caregiving competence of non-European immigrant family caregivers of people with dementia living at home in Sweden. The overarching aim is to reduce caregiver burden and depressive symptoms, and improve quality of life. Methods A randomized controlled trial (RCT) including wait list control group will be performed consisting of an intervention group (A, n = 44) and a wait list control group (B, n = 44), totaling a sample size of 88. On completion of the 10-weeks long intervention in the intervention group, the intervention will be delivered to group B. Effect of the intervention will be analyzed between and within groups over time. The content of the educational component of the intervention is inspired by the iSupport manual developed by the World Health Organization. The contents, in the form of a booklet, aims to equip the family caregivers with structured information on understanding dementia as a condition and its management at home, including self-care guidance designed specifically for family caregivers themselves. Discussion Similar telephone-delivered intervention studies targeted for family caregivers to persons with dementia are ongoing in Malaysia and will start in India using the same booklet adapted to the local context. These studies will provide evidence on the effectiveness of using digital technologies to deliver support to those who may not be reached or adequately served by the traditional healthcare system. Trial registration ISRCTN registry, Registration number ISRCTN64235563.

Abstract Background Assistive technology carries the promise of alleviating public expenditure on long-term care, while at the same time enabling older adults to live more safely at home for as long as possible. Home-dwelling older people receiving reablement and dementia care at their homes are two important target groups for assistive technology. However, the need for help, the type of help and the progression of their needs differ. These two groups are seldom compared even though they are two large groups of service users in Norway and their care needs constitute considerable costs to Norwegian municipalities. The study explores how assistive technology impacts the feeling of safety among these two groups and their family caregivers. Methods Face-to-face, semi-structured interviews lasting between 17 and 61 min were conducted between November 2018 and August 2019 with home-dwelling older adults receiving reablement (N = 15) and dementia care (N = 10) and the family caregivers (N = 9) of these users in seven municipalities in Norway. All interviews were audio-recorded, fully transcribed, thematically coded and inductively analyzed following Clarke and Braun’s principles for thematic analysis. Results Service users in both groups felt safe when knowing how to use assistive technology. However, the knowledge of how to use assistive technology was not enough to create a feeling of safety. In fact, for some users, this knowledge was a source of anxiety or frustration, especially when the user had experienced the limitations of the technology. For the service users with dementia, assistive technology was experienced as disturbing when they were unable to understand how to handle it, but at the same time, it also enabled some of them to continue living at home. For reablement users, overreliance on technology could undermine the progress of their functional improvement and thus their independence. Conclusion For users in both service groups, assistive technology may promote a sense of safety but has also disadvantages. However, technology alone does not seem to create a sense of safety. Rather, it is the appropriate use of assistive technology within the context of interactions between service users, their family caregivers and the healthcare staff that contributes to the feeling of safety.

Abstract Background The ageing population and the rise of persons with dementia (PWD) living at home have increased the need for support by family caregivers (FC). Research suggests that most FCs are unprepared for the complex role of informal caregiving. The use of mobile applications (apps) provide a cost-effective and efficient opportunity for community-based social care professionals to provide tailor-made support to FCs. The literature indicates that there are limited mobile apps available to meet the needs of the FCs to PWD living at home. The aim of this study was to explore how social care professionals and FCs to PWD living at home experience providing and receiving support through a tailor-made mobile app named STAV. Methods A qualitative descriptive design was applied. Data were collected through semi-structured interviews with 11 community-based social care professionals and 19 FCs of PWD living at home. The data were analyzed inductively using thematic analysis. Results The social care professionals and the FCs’ experience of providing and receiving support through a mobile app was represented by the following themes: Accessibility to support – Bridging the gap, Engaging from a distance, and Limitations of the support. Conclusions This study highlights the need for FCs to PWD to receive support that is tailor-made to their needs as caregivers. The findings from this study can help community-based social care providers plan and organize long-distance support for FCs to PWD living at home. The findings further support the use of a mobile app as a complement to traditional means of support for FCs to PWD which can facilitate their knowledge, awareness, and self-care management.

Abstract Background Approximately 3.9 million persons worldwide have young-onset dementia. Symptoms related to young-onset dementia present distinct challenges related to finances, employment, and family. To provide tailored support, it is important to gain knowledge about the formal support available for persons with young-onset dementia. Therefore, this paper aims to describe formal support for persons with young-onset dementia in Sweden and the factors influencing this support. Methods This retrospective study used data on persons under 65 years of age (n = 284) from The Swedish Registry for Cognitive/Dementia Disorders (SveDem) between 2021 and 2022. SveDem was established to monitor the quality of dementia care in Sweden. Characteristics of participants were obtained, including age, sex, dementia diagnosis, MMSE, medications, accommodation, and care setting. Descriptive statistics and logistic regression were used to test for associations between participant characteristics and post-diagnostic support. Results Information and educational support were usually offered to the person with young-onset dementia (90.1%) and their family (78.9%). Approximately half of the sample were offered contact with a dementia nurse (49.3%), counsellor (51.4%), or needs assessor (47.9%). A minority (28.5%) were offered cognitive aids. Six regression models were conducted based on participant characteristics to predict the likelihood that persons were offered support. Support was not predicted by age, sex, children at home, accommodation, or medications. Lower MMSE scores (p

Summary: Background: Agitation affects around 30% of people living with dementia (PLwD), increasing carer burden and straining care services. Agitation identification typically relies on subjective clinical scales and direct patient observation, which are resource-intensive and challenging to incorporate into routine care. Clinical applicability of data-driven methods for agitation monitoring is limited by constraints such as short observational periods, data granularity, and lack of interpretability and generalisation. Current interventions for agitation are primarily medication-based, which may lead to severe side effects and lack personalisation. Understanding how real-world factors interact with agitation within home settings offers a promising avenue towards identifying potential personalised non-pharmacological interventions. Methods: We used longitudinal data (32,896 person-days from n = 63 PLwD) collected using in-home monitoring devices between December 2020 and March 2023. Employing machine learning techniques, we developed a monitoring tool to identify the presence of agitation during the week. We incorporated a traffic-light system to stratify agitation probability estimates supporting clinical decision-making, and employed the SHapley Additive exPlanations (SHAP) framework to enhance interpretability. We designed an interactive tool that enables the exploration of personalised non-pharmacological interventions, such as modifying ambient light and temperature. Findings: Light Gradient-boosting Machine (LightGBM) achieved the highest performance in identifying agitation over an 8-day period with a sensitivity of 71.32% ± 7.38 and specificity of 75.28% ± 7.38. Implementing the traffic-light system for stratification increased specificity to 90.3% ± 7.55 and improved all metrics. Key features for identifying agitation included low nocturnal respiratory rate, heightened alertness during sleep, and increased indoor illuminance, as revealed by statistical and feature importance analysis. Using our interactive tool, we identified indoor lighting and temperature adjustments as the most promising and feasible intervention options within our cohort. Interpretation: Our interpretable framework for agitation monitoring, developed using data from a dementia care study, showcases significant clinical value. The accompanying interactive interface allows for the in-silico simulation of non-pharmacological interventions, facilitating the design of personalised interventions that can improve in-home dementia care. Funding: This study is funded by the UK Dementia Research Institute [award number UK DRI-7002] through UK DRI Ltd, principally funded by the Medical Research Council (MRC), and the UKRI Engineering and Physical Sciences Research Council (EPSRC) PROTECT Project (grant number: EP/W031892/1). Infrastructure support for this research was provided by the NIHR Imperial Biomedical Research Centre (BRC) and the UKRI Medical Research Council (MRC). P.B. is also funded by the Great Ormond Street Hospital and the Royal Academy of Engineering. C.S. is supported by the UK Dementia Research Institute [award number UK DRI-5209], a UKRI Future Leaders Fellowship [MR/MR/X032892/1] and the Edmond J. Safra Foundation. R.N. is funded by UK Dementia Research Institute [award number UK DRI-7002] and the UKRI Engineering and Physical Sciences Research Council (EPSRC) PROTECT Project (grant number: EP/W031892/1). M.B. and A.K.S. are funded by the UK Dementia Research Institute [award number UKDRI-7002 and UKDRI-5209]. N.F.L., A.C., C.W. and S.K. are funded by the UK Dementia Research Institute [award number UK DRI-7002].

BackgroundThe quality of care of the 6.5 million Americans living with dementia has been suboptimal, leading to worse outcomes and higher costs. Few health systems have formal systems in place to guide the care of these patients. To help improve the care of persons living with dementia, we developed and preliminarily evaluated the effectiveness of electronic health record (EHR)-generated recommendations for patients with dementia.MethodsThis quality improvement study was conducted from October 2020 through June 2022 at a single academic healthcare system and included patients identified as having dementia on their problem list and their physicians. Ten (seven outpatient and three inpatient) algorithms based on clinical logic and evidence were embedded in an EHR system to generate specific recommendations based on combinations of utilization, diagnosis, and medications. The number of each type of recommendation generated, and orders for each type of recommendation were recorded, as well as physician's perceptions of this approach.ResultsThree thousand six hundred and nine recommendations on 763 patients were triggered by the algorithms in the outpatient setting, and 185 referrals were placed. The most common recommendations were for ongoing care through the UCLA Alzheimer's and Dementia Care program, Palliative Care, the Extensivist Clinic, Urogynecology, and Clinical Pharmacy. The most commonly acted upon by providers were recommendations for referral to Pharmacists and the UCLA Alzheimer's and Dementia Care program. The most common reason for not responding to specific recommendations was that these were not perceived as relevant to the patient. Compared to general medicine physicians, geriatricians felt more comfortable managing dementia care without a referral to a service (23% (95% CI 15%-34%) versus 3% (95% CI 0%-17%), p = 0.012) and less commonly felt the recommendation was appropriate (1% (95% CI 0%-7%) versus 13% (95% CI 4%-30%), p = 0.02).ConclusionsEHR-generated algorithms can help guide patients with dementia to appropriate clinical services.