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Background and Objectives Respite, defined as time away from caregiving, is the most requested type of caregiver support. Time for Living and Caring (TLC) is a virtual coaching "app" that helps caregivers schedule and plan their respite time-use. The objectives of this analysis are: (1) to assess the efficacy of the TLC intervention on respite time-use and on caregiver well-being and (2) to identify the key features of the intervention that serve as the likely mechanism of action. Research Design and Methods A sample of dementia caregivers (n  = 163, 79% female, 84% White, 6% Hispanic, average age 62) were randomized into one of two intervention delivery methods. Intervention efficacy was evaluated using pre/post-comparisons of respite time-use and an additive "dosing" model that estimated unique parameters associated with the exposure to each specific intervention component. Results Both immediate and delayed-attention groups reported increased respite time. They also improved in their ability to plan and perceive benefit from their respite time-use over the 16-week intervention period. At 8 weeks, the immediate group did not change in anxiety, whereas the delayed group worsened (p  < .001). At 16 weeks, the groups were similar in their anxiety levels. By the 20-week follow-up period, when neither group had access to TLC, both experienced an increase in anxiety. Discussion and Implications TLC is a promising intervention that may support caregivers' well-being, by helping them schedule and plan their respite to maximize its benefit. The provision of weekly coaching seems to be the intervention component (mechanism) associated with caregiver outcomes. Clinical Trial Registration NCT03689179 [ABSTRACT FROM AUTHOR]

Objective: Negative and positive aspects of caregiving (PAC) coexist. Ignoring the PAC limits the overall understanding of caregiving adaptation and thus undermines the development of initiatives. This study aimed to translate the PAC Questionnaire (PACQ) into Turkish and assess its psychometric properties of the Turkish version of the positive aspects of caregiving questionnaire (T-PACQ). Materials and Methods: This study used a descriptive and methodological approach. After linguistic validity, we conducted a convenience sample of 222 family caregivers of people living with dementia, all home dwellings, using a socio-demographic form, Beck depression inventory, and T-PACQ. Factor analysis [exploratory factor analyses and confirmatory factor analyses (CFA)], analyses of discriminant validity, internal consistency (using Cronbach's alpha), item-total and item-sub-dimensions correlations, ceiling and floor effects, and Hotelling's t-squared test were conducted. Results: The linguistic validity of the instrument was satisfactory. The total explained variance of the instrument consisting of two domains and 10 items was determined to be 48.40%. According to CFA, model fit indices were ≥0.90. The value of Cronbach's alpha was found to be 0.80. No response bias or ceiling-floor effects were observed. Conclusion: This instrument is a short and robust measurement tool for assessing family caregivers' perceptions of the PAC. It could be used to engage in appropriate initiatives for family caregivers and assess their effectiveness. [ABSTRACT FROM AUTHOR]

Dementia is often represented as both a terrifying illness and a social threat. Graphic medicine is a burgeoning comics genre dealing with the experience of dementia through physical, and emotional issues. Through the medium of comics, graphic memoirs tease out how dementia operates formally and thematically. In this email interview, three graphic memoirists, Nigel Baines (author of Afloat), Rebecca Roher (author of Bird in a Cage) and Liza Futerman (author of Keeper of the Clouds), reflect on their nuanced understanding of dementia, their experience as caregivers, the challenges of dementia caregiving, and the potential of graphic medicine to convey such issues. The interview is divided into two sections: in Part I, titled Of Comics and Dementia, the authors respond to common questions related to dementia, personhood, dementia care, and graphic memoirs, among others, and in Part II, titled 'Tragedy not deep and sharp if it can be shared with friends': The Power of Storytelling, each of the authors responds to questions related to their respective dementia comics [ABSTRACT FROM AUTHOR]

Humor has been found to be used as a discourse strategy for negotiating power relations and mitigating FTAs in institutional elderly care. Drawing from two years of ethnography in two adult day centers in Taiwan, this article examines verbal play between a person living with dementia and a caregiver over time to illustrate how verbal play is used as meaningful, tailored practices for person-centered dementia care that leads to enhanced cognition and positive emotion. The caregiver's framing of dementia care as person-centered and her laminating multiple frames of interactions to enrich communicative environments provides a fruitful approach to dementia care in institutional contexts and beyond. [ABSTRACT FROM AUTHOR]

Background: Virtual reality (VR) is recognized as a versatile training tool across various domains, including healthcare. In Jordan, dementia is a significant public health concern, accounting for 5.17% of all recorded deaths. Given the complex nature of dementia care, preparing nursing students is crucial. Purpose: This paper explores the feasibility and effectiveness of VR-based empathy training for nursing students, with a growing global interest in VR training applications, despite the need for further study of VR acceptability in the Jordanian context. Methods: This mixed-methods study included 71 nursing students in a psychiatric course at a university in Jordan. Feasibility was assessed through recruitment, retention, adherence, data completion, and implementation fidelity. Pre- and post-intervention assessments measured empathy levels. Thematic analysis of participant feedback provided insights into usability. Results: Recruitment and retention rates were excellent, with a 100% participation rate and 100% retention. The intervention demonstrated a statistically significant enhancement in empathy scores following the program (M_pre = 50.44, SD_pre = 9.24; M_post = 65.17, SD_post = 8.53), t (71) = -23.89, p < 0.001. The thematic analysis highlighted the importance of a user-friendly interface, a supportive learning environment, and engaging content. Conclusion: This study highlights the potential of VR-based training to enhance empathy among nursing students in the context of dementia care. The robust feasibility outcomes and positive user experiences suggest that VR technology can be a valuable addition to nursing curricula, ultimately benefiting patient care and the nursing workforce. Implications for Nursing: Integrating VR into nursing education presents the potential for elevating empathy in nursing students, notably within dementia care. This innovative approach equips prospective healthcare providers with vital skills for delivering more compassionate patient care. [ABSTRACT FROM AUTHOR]

Background and Objectives Rejection of care is common in hospitalized persons living with dementia. However, distinguishing between rejection of care behaviors related to care practices or other causes, such as pain or delirium, is challenging. The purpose of this study is to further understand the relationship between rejection of care and pain and delirium in hospitalized patients with dementia by identifying which rejection of care behaviors are associated with pain and delirium. Research Design and Methods Care encounters between hospitalized patients with dementia (n = 16) and nursing staff (n = 53) were observed on 88 separate occasions across 35 days. Rejection of care was measured using the 13 behaviors from the Resistiveness to Care Scale. Pain and delirium severity were measured using a variety of scales including the Pain Assessment in Advanced Dementia Scale, Checklist of Nonverbal Pain Indicators, and numeric rating scale for pain severity and the Confusion Assessment Method—Severity short form and Delirium Observation Screening Scale for delirium severity. Linear mixed modeling was used to determine the relationship between rejection of care behaviors and pain and delirium severity for each measure. Results About 48.9% of the observations included rejection of care, 49.9% included a patient in pain, and 12.5% included a patient with delirium. Cry, push away, scream/yell, and turn away indicated a higher pain severity across pain measures. No rejection of care behaviors were found to indicate delirium severity. Discussion and Implications Certain rejection of care behaviors may be helpful in identifying pain in hospitalized patients with dementia, suggesting that caregivers should be cognizant of pain when these rejection of care behaviors are present. However, in this sample rejection of care behaviors was not found to be useful for identifying delirium severity in hospital dementia care. [ABSTRACT FROM AUTHOR]

Background: Firearm safety among individuals with Alzheimer disease and related dementias (ADRD) is an underdiscussed and underresearched concern in the United States, especially given the growing population of community-dwelling adults with ADRD. The "Safety in Dementia" (SiD) web-based decision aid was developed to support caregivers in addressing firearm access; the efficacy of SiD is unknown. Objective: Through the SiD decision aid, the Safe at Home (S@H) study aims to support caregivers in making decisions about home safety that align with their goals and values, and behaviors regarding firearm access for persons with ADRD and firearm access. Methods: The S@H study is a 2-armed randomized controlled trial to test the effect of the SiD decision aid on caregivers of community-dwelling adults with ADRD who have firearm access. S@H aims to recruit 500 ADRD caregivers (age ≥18 years, fluent in English or Spanish, and in the United States) through online or social media advertisements and through relevant organizations. Participants are randomized to view SiD or a control website at their own pace; all participants complete web-based questionnaires at baseline, 2 weeks, 2 months, and 6 months. The primary outcome is immediate preparation for decision-making; secondary outcomes include longitudinal decision outcomes and self-reported modifications to firearm access. The relative reach and effectiveness of each recruitment method (online/social media and through relevant organizations) will be assessed by examining differences in caregiver participation, retention rates, and relative cost. Results: The study enrollment began in May 2022. As of December 2022, a total of 117 participants had enrolled. Conclusions: The S@H study is the first randomized trial of a firearm safety decision aid for ADRD caregivers. The results from this study will inform how best to support caregivers in decision-making regarding firearm safety. Further, results may guide approaches for recruiting caregivers and for dissemination of resources. [ABSTRACT FROM AUTHOR]

Background and Objectives Agitation, a critical behavioral and psychological symptom in dementia, has a profound impact on a patients' quality of life as well as their caregivers'. Autonomous and objective characterization of agitation with multimodal systems has the potential to capture key patient responses or agitation triggers. Research Design and Methods In this article, we describe our multimodal system design that encompasses contextual parameters, physiological parameters, and psychological parameters. This design is the first to include all three of these facets in an n > 1 study. Using a combination of fixed and wearable sensors and a custom-made app for psychological annotation, we aim to identify physiological markers and contextual triggers of agitation. Results A discussion of both the clinical as well as the technical implementation of the to-date data collection protocol is presented, as well as initial insights into pilot study data collection. Discussion and Implications The ongoing data collection moves us toward improved agitation quantification and subsequent prediction, eventually enabling just-in-time intervention. [ABSTRACT FROM AUTHOR]

Objective: The aim of this study was to identify the challenges faced by nurses while providing care to patients with dementia. Materials and Methods: This study was a descriptive and qualitative study conducted between 10 December 2017 and 1 March 2018. In-depth interviews were conducted with ten nurses. Data were analyzed using the inductive content analysis method. Results: Four themes and eight subthemes were identified. The themes were: the perception of dementia, the meaning attributed to caring for patients with dementia, challenges of nursing care in dementia, and empowerment in care practices. Conclusion: Nurses must understand the complex needs of people with dementia in hospitals and clinics. Because these patients need personcentered care that requires special communication and behavior. Nurses should be supported to provide this care to patients with dementia and manage the symptoms of patients with dementia. It contributes to providing individual and institutional support to nurses who care for patients with dementia, improving their communication skills, and coping with the difficulties and difficulties faced by nurses. [ABSTRACT FROM AUTHOR]

Objective: The aim of this study was to determine the sleep quality of caregivers of people with dementia (PwD) and the factors affecting it. Materials and Methods: A cross-sectional study design was used. A total of 119 home-dwelling PwD and their primary caregivers were recruited from February-July 2019. Socio-demographic characteristics form, Pittsburg sleep quality, mini mental state examination (MMSE), neuropsychiatric inventory (NPI), activities of daily Living (ADL) and instrumental ADL (IADL), perceived stress scale (PSS), caregiver burden inventory (CBI), Beck depression inventory (BDI), and Charlson comorbidity index (CCI) were used. Descriptive statistics, t-test, Pearson's correlation and multinominal regression analysis were performed using SPSS version 25.0. Results: The sleep quality of the caregivers was poor (10.70±3.663). Patients' MMSE, NPI, ADL and IADL; caregivers' PSS, CBI, BDI, and CCI together were a significant predictor of caregiver sleep quality (F=17.020; p<0.001). Eight variables together account for 55% of the variance in sleep quality. Predictive order of importance of variables on caregiver sleep quality was in the form of CCI (ß=-0.396), BDI (ß=0.292), MMSE score (ß=-0.284), NPI (ß=-0.239), PSS (ß=0.196), CBI (ß=0.108), ADL (ß=-0.080), and IADL (ß=0.052). Conclusion: By determining the sleep quality and factors affecting of caregivers, it is considered that the caregivers will provide an opportunity for projects that will increase the sleep quality interventionally. Interventions to reduce caregiver depression, stress and burden can improve caregiver sleep quality; in addition, it is suggested that they will contribute to the sleep quality of caregivers in their attempts to improve the behavioral and cognitive functions of PwD. [ABSTRACT FROM AUTHOR]

We examine a "regime of anticipation" that has led mostly European entrepreneurs to build and manage new long-term care facilities situated around the city of Chiang Mai, Thailand, an emerging 'hot spot' in the relocation and provision of dementia care for an overseas clientele. Anticipations of crisis (and the explosive demand for dementia care) is exciting entrepreneurial imaginations in Thailand and, drawing on ethnographic field work and in-depth interviews, we examine how a transnational care market is being created and made to work. The owners and operators of these care facilities are experimenting with different care models and norms to create a transnational marketplace and to stretch the geographies of care. Yet dementia care is an inherently unstable commodity that might seem to resist outsourcing from the Global North to the Global South; as such, we pay close attention to the strategies deployed to try and stabilize the commodification of this most intimate labor. We detail how intimacy is constructed and circulated for dementia care to go global and the resources of trust required by owners and family members for this uneasy transnational economy to function. [ABSTRACT FROM AUTHOR]

Background: Technology is increasingly being used and evolving in the dementia care landscape. One such technology that has gained traction over the last decade is virtual reality (VR). VR is being applied in many areas of dementia care, including cognitive assessment and training, reminiscence therapy, music therapy, and other recreational VR applications. Despite the plethora of applications, they are often not shaped by the experiences and perceptions of older adults living with dementia. Currently, there is no qualitative evidence synthesis (QES) to explore this area. This review aimed to provide qualitative evidence supporting existing systematic reviews in this area. Objective: The aim of this QES was to explore key stakeholders' experiences and perceptions of VR for older adults living with dementia. It aimed to explore the barriers and facilitators to VR use and provide recommendations for future design and implementation. Methods: QES was used, which involved a systematic search of 6 databases to identify studies that qualitatively explored key stakeholders' experiences and perceptions of VR for older adults living with dementia. Thematic synthesis was used to integrate the findings of 14 studies (from 15 reports). The Critical Appraisal Skills Programme tool was used to assess the methodological quality of the included studies. The confidence placed in the review findings was assessed using the GRADE-CERQUAL (Confidence in the Evidence from Reviews of Qualitative research). Results: A total of 15 reports from 14 studies were included in the review, consisting of a range of levels of VR immersion, stages of dementia, and care contexts. Three analytical themes were generated: stepping into virtuality, a virtual world, and returning to reality. The results indicate the importance of sensitively designing and introducing VR to this population, as older adults living with dementia often have no prior experience of using this technology. VR can be a positive experience for older adults living with dementia and can provide meaningful interactions, positive expressions, and long-term impacts on everyday functioning. However, it should be acknowledged that some negative associations must be accounted for before, during, and after use. Conclusions: This review highlights the positive implications as well as negative associations of VR use. It emphasizes the need for VR design and implementation driven by the needs and views of older adults living with dementia as well as with other key stakeholders. Future research needs to explore the vital role that older adults living with dementia can play in the design process and how they can be empowered to meaningfully design and use this technology. JMIR [ABSTRACT FROM AUTHOR]

Adopting a theological and social science lens, this study examined the role of sport in the care and treatment of individuals with dementia, through an examination of the sport-dementia organization Sporting Memories Network (SMN). A conceptual, theoretical, and methodological backdrop to the study is provided through analysis of a number of themes: the definition, prevalence, and varied treatment pathways of dementia; sport-based dementia research and interventions; an overview of SMN; and theological reflections on dementia. A qualitative approach was adopted in which an expert/elite one-to-one interview was conducted with the Revd. Professor John Swinton, and the resultant transcript was analyzed using thematic content analysis. Emergent themes suggested sport-dementia interventions, such as SMN, are one effective approach to care for and treat individuals with dementia. The article concludes by suggesting future research should explore how Christian sport organizations (and the broader church) might partner with SMN and similar organizations to address the dementia crisis. [ABSTRACT FROM AUTHOR]

Background: Due to the importance of anxiety and its common symptoms with other physical and mental diseases in elderly patients, valid screening measures are needed. Based on this need, the present study attempted to assess the reliability and validity of the Persian version of the Rating Anxiety in Dementia (RAID). Methods: This research was a cross-sectional study on the development and localization of instruments, conducted on 209 patients with dementia referring to psychiatry clinics of the elderly in Isfahan, Iran, with the convenience sampling method. The procedures for RAID localizations were translated and back-translated in 2021 using central and distributive tendencies and inferential statistical methods, internal consistency of the scale and exploratory factor analysis (EFA) were tested. To conduct the statistical calculations, SPSS software was used. Results: 209 participants with a mean age of 52.6 ± 13.3 were selected. Seventy-eight participants were men (37.3%), and 126 were women (60.3%). The Cronbach's alpha coefficient was found to be 0.89. Based on the varimax rotation, in the five-factor model (according to principal component analysis, irritability, tension, anxiety, worry, weakness), questions 2 and 11 were removed for weak factor loading, and eigenvalue was explained by 66.2% variance. The convergent validity between Mini-Mental State Examination (MMSE) scale and RAID was positive (r = 0.25, P = 0.002). Conclusion: The findings confirmed the validity and reliability of the Iranian version of RAID as an appropriate instrument for screening anxiety in elderly patients with dementia. [ABSTRACT FROM AUTHOR]

Background and Objectives It is well documented that caring for someone with dementia is associated with many negative mental health outcomes, such as depression, anxiety, and a reduction in quality of life. Group-based interventions are one strategy for improving well-being for carers, but previous systematic reviews have reported inconsistent findings about the efficacy of group-based interventions for carers of people with dementia. Research Design and Methods This systematic review investigates the qualitative and quantitative evidence for the effectiveness of group-based interventions and identifies targets for future research. Narrative synthesis was used to analyze the data. Results A comprehensive search of 4 databases revealed 117 potentially relevant studies, 19 of which met the full inclusion criteria. Five studies investigated group cognitive behavioral therapy, 8 investigated psycho-educational interventions, and 6 investigated support groups. The effectiveness of the interventions varied widely, even within subcategories. No type of intervention was consistently shown to improve well-being, though qualitative data and data about participant satisfaction was generally very positive. Discussion and Implications Based on the quality and quantity of the evidence currently available, there is not enough evidence to reach firm conclusions about the impact of group-based interventions on well-being. In order to establish the effectiveness of group-based interventions there needs to be more high-quality studies with larger sample sizes about this topic. Future research may benefit from the use of mixed methods data collection to explore the disparity between qualitative and quantitative findings in the literature. [ABSTRACT FROM AUTHOR]

Background: The practice of euthanasia in dementia has thus far been described both in terms of its empirical patient characteristics and its ethical questions. However, 40 new cases have been published since the last study. Methods: A qualitative content analysis of all 111 Dutch case summaries of euthanasia in dementia patients between 2012 and 2020, selected from the total of 1117 cases published by the Regional Euthanasia Review Committees (RTE). Our initial analytical framework consists of six due care criteria and five ethical principles. Results: 111 case summaries were analyzed, from which we distilled seven recurring ethical questions: (1) How voluntary is a request? (2) Can an incapacitated patient make well‐considered requests? (3) What constitutes "unbearable suffering"? (4) What if the unbearableness of suffering solely consists of "the absence of any prospect of improvement"? (5) What if a euthanasia request is meant to prevent future suffering (now for then)? (6) How (well) can a patient with cognitive limitations be informed? (7) What are "reasonable alternatives" and what if patients decline available alternatives? Conclusions: Beyond these questions, however, we also see some serious challenges for the future: (a) narrowing the gap between perceived and real nursing home quality, since many advance euthanasia directives refer to nursing homes as sources of unbearable suffering; (b) making information to incompetent patients and their relatives about end of life options more tailor made, since it is questionable whether patients with dementia currently understand all of the euthanasia procedure; (c) involving patients' own physician as long as possible in a euthanasia request. Training may help physicians to deal better with euthanasia requests by patients suffering from dementia; (d) longitudinal research is required that encompasses all dementia euthanasia cases, not only those selected by the RTE. [ABSTRACT FROM AUTHOR]

Background: Organizational and clinician characteristics are important considerations for the implementation of evidence-based recommendations into primary care practice. The introduction of Canadian dementia practice guidelines and Alzheimer strategies offers a unique context to study which of the organizational and clinician characteristics align with good quality care in primary care practices. Methods: To evaluate the quality of dementia care, we carried out a retrospective chart review in randomly selected patients with a diagnosis of dementia and who had a visit during a 9-month period in 33 primary care practices. We collected data on indicators that were based on existing Canadian evidence-based recommendations to measure a quality of dementia care score. In addition, four questionnaires were administered: two questionnaires to evaluate the organizational characteristics of the practices (dementia-specific and general organization) and two to evaluate the clinician characteristics (one for family physicians and one for nurses). Primary care practices were stratified into tertiles based on their average quality of dementia care score (low, moderate, high). The differences between the groups organizational and clinician questionnaires scores were analyzed descriptively and visually. Results: The mean overall scores for each questionnaire were higher in the high quality of dementia care group. When looking at the breakdown of the overall score into each characteristic, the high-quality group had a higher average score for the dementia-specific organizational characteristics of "access to and coordination with home and community services", "financial support", "training", "coordination and continuity within the practice", and "caregiver support and involvement". The characteristic "Leadership" showed a higher average score for the moderate and high-quality groups than the low-quality group. In both clinician questionnaires, the high group scored better in "attitudes towards the Alzheimer's plan" than the other two groups. Conclusions: These results suggest that investing in organizational characteristics specifically aimed at dementia care is a promising avenue to improve quality of dementia care in primary care. These results may be useful to enhance the implementation of evidence-based practices and improve the quality of dementia care. [ABSTRACT FROM AUTHOR]

Background: Alzheimer's disease and related dementias (ADRD) affect 5.7 million Americans, and are expensive despite the lack of a cure or even treatments effective in managing the disease. The literature thus far has tended to focus on the costs to Medicare, even though one of the main characteristics of ADRD (the loss of independence and ability to care for oneself) incurs costs not covered by Medicare. Methods: In this paper, we use survey data for 2002–2016 from the Health and Retirement Study to estimate the out‐of‐pocket costs of ADRD for the patient and their family through the first 8 years after the onset of symptoms, as defined by a standardized 27‐point scale of cognitive ability. A two‐part model developed by Basu and Manning (2010) allows us to separate the costs attributable to ADRD into two components, one driven by differences in longevity and one driven by differences in utilization. Results: We identified a cohort of 3619 incident dementia cases, 38.9% were male, and 66.9% were non‐Hispanic White. Dementia onset was 77.7 years of age, on average. OOP costs attributable to dementia are $8751 over the first 8 years after the onset. These incremental costs are driven by nursing home expenditures, which are largely uninsured in the US. OOP spending is highest for whites and women. Conclusion: The financial burden of ADRD is significant, and largely attributable to the lack of wide‐spread long‐term care insurance. [ABSTRACT FROM AUTHOR]

Background: Previous studies have demonstrated positive impacts of advance care planning (ACP) on end‐of‐life (EOL) care. We sought to examine trends in ACP and EOL care intensity among persons living with dementia who required surrogate decision‐making in their final days of life. Methods: We analyzed the participants of the Health and Retirement Study (HRS), a nationally representative longitudinal panel study of U.S. residents, with dementia 70 years and older who required surrogate decision‐making in the final days of life and died between 2000 and 2014. Based on surrogate reports after the death of a participant, our study measured the completion of three specific types of patient‐engaged ACP (written EOL care instructions, assignment of a durable power of attorney for healthcare, patient engagement in EOL care discussions) and four measures of EOL care in the final days of life (death in hospital, receipt of life‐prolonging treatments, limiting or withholding certain treatments, and receipt of comfort‐oriented care). All analyses accounted for the complex survey design of HRS. Results: Among 870 adults (weighted N = 2,812,380) with dementia who died in 2000–2014 and required surrogate decision‐making at EOL, only 34.8% of patients participated in all three aspects of ACP, and there was not a significant increase in ACP completion between 2000 and 2014. The receipt of life‐prolonging treatments in the final days of life has increased over time (adjusted change per year, 1.4 percentage points [pp]; 95% CI, 0.5 to 2.2 pp; P‐for‐trend = 0.002), while the percentage of death in hospital, limiting or withholding certain treatments, or comfort‐oriented care did not change. Conclusions: Our findings suggest that the rates of ACP completion have not increased over time despite its potential benefits and life‐prolonging treatments are still common among PLWD who require surrogate decision‐making, a population who might benefit greatly from early ACP. [ABSTRACT FROM AUTHOR]

Background: Latinx family caregivers of individuals with dementia face many barriers to caregiver support access. Interventions to alleviate these barriers are urgently needed. Objective: This study aimed to describe the development of CuidaTEXT, a tailored SMS text messaging intervention to support Latinx family caregivers of individuals with dementia. Methods: CuidaTEXT is informed by the stress process framework and social cognitive theory. We developed and refined CuidaTEXT using a mixed methods approach that included thematic analysis and descriptive statistics. We followed 6 user-centered design stages, namely, the selection of design principles, software vendor collaboration, evidence-based foundation, caregiver and research and clinical advisory board guidance, sketching and prototyping, and usability testing of the prototype of CuidaTEXT among 5 Latinx caregivers. Results: CuidaTEXT is a bilingual 6-month-long SMS text messaging-based intervention tailored to caregiver needs that includes 1-3 daily automatic messages (n=244) about logistics, dementia education, self-care, social support, end of life, care of the person with dementia, behavioral symptoms, and problem-solving strategies; 783 keyword-driven text messages for further help with the aforementioned topics; live chat interaction with a coach for further help; and a 19-page reference booklet summarizing the purpose and functions of the intervention. The 5 Latinx caregivers who used the prototype of CuidaTEXT scored an average of 97 out of 100 on the System Usability Scale. Conclusions: CuidaTEXT's prototype demonstrated high usability among Latinx caregivers. CuidaTEXT's feasibility is ready to be tested. [ABSTRACT FROM AUTHOR]

Background: Estimates suggest that 6.2 million Americans aged =65 years are living with Alzheimer dementia in 2021, and by 2060, this number could more than double to 13.8 million. As a result, public health officials anticipate a greater need for caregivers of persons with Alzheimer disease or related dementia and support resources for both people living with dementia and their caregivers. Despite the growing need for dementia caregiver support services, there is a lack of consensus regarding how to tailor these services to best meet the heterogeneous needs of individual caregivers. To fill this gap, Care to Plan (CtP), a web-based tool for caregivers of people living with dementia, was developed to provide tailored support recommendations to dementia caregivers. Objective: The aim of this study is to formally explore the feasibility, acceptability, and utility of CtP for 20 family members of people living with dementia within a health system over a 1-month time period using a mixed methods parallel convergent design. Methods: A moderately sized health system in the mid-Atlantic region was selected as the site for CtP implementation, where 20 caregivers who were family members of people living with dementia were enrolled. The web-based CtP tool was used by caregivers and facilitated by a health care professional (ie, a senior care navigator [SCN]). Caregivers were given a 21-item review checklist to assess barriers and facilitators associated with reviewing CtP with an SCN. Following the 21-item review checklist, semistructured telephone interviews, which included 18 open-ended questions, focused on the facilitators of and barriers to CtP implementation and recommendations for future implementation. Results: Quantitative results suggested that 85% (17/20) of caregivers indicated that CtP was helpful and 90% (18/20) would recommend CtP to someone in a similar situation. The qualitative analysis identified 4 themes regarding facilitators of and barriers to implementation: caregiver factors, SCN factors, CtP tool system factors, and recommendations and resources factors. Conclusions: CtP was found to be not only feasible but also a valuable tool for caregivers seeking resources for themselves and their people living with dementia. Long-term evaluation findings aim to generate results on how CtP can be integrated into care plans for caregivers and how SCNs can provide additional support for caregivers of people living with dementia over an extended period. [ABSTRACT FROM AUTHOR]

All effective communication is based on the participants trusting that they share their basic orientations to the world – that is, they have a common ground. In this paper, however, we examine situations in which such trust is lacking. Drawing on conversation–analytic methodology and on 30 hours of video data featuring persons with dementia and their caregivers in a Swedish-language daycare center in Finland, we consider some of the social consequences resulting from a lack of trust. Our analysis focused on three different interactional contexts, highlighting the relevance of different facets of the participants' common ground. These facets are anchored in the deontic, epistemic, and emotional orders, respectively. We show that, with regard to each order, a lack of trust in the existence of common ground has drastic consequences, leading to (1) problems related to getting one's will acknowledged, (2) a scarcity of conversational partners, and (3) a lack of resources to maintain affection. [ABSTRACT FROM AUTHOR]

Background: COVID-19 isolated home-dwelling people with dementia (PwD) from home care services, respite care, and daytime activities. We aimed to investigate the consequences of these restrictions on informal (family, friends) and formal (homecare staff) resource utilization among co-residing (e.g., spouses) and visiting caregivers (e.g., children). Methods: 105 PwD (≥65 years old) and their caregivers were included in the prospective PANdemic in DEMentia (PAN.DEM) study, which was initiated when the ongoing stepped-wedge, cluster randomized LIVE@Home.Path trial (N = 438) was temporarily halted due to the pandemic. Primary outcome was change in resource utilization assessed by the Resource Utilization in Dementia Care (RUD) instrument in pre- (12 Dec. 2019 to 11 Mar. 2020) and during the lockdown periods (20 April 2020 to 15 May 2020). Degree of cognitive impairment was assessed by Mini-Mental Status Examination (MMSE), and physical functioning and independent living skills by Physical Self-Maintenance Scale and Lawton Instrumental Activities of Daily Living Scale. Associations between informal and formal care utilization, socio-demographics, and clinical variables were assessed by descriptive statistics and Ordinary Least Squares models (OLS). Results: Mean age for PwD was 81.8 years; 61% were female; 45.6% lived alone, and the mean MMSE score was 20.8 (SD ± 3.7). PwD with co-residents (44%) were younger (78.4 years) than those who were living alone (84.5 years; P < 0.001). During the first 2 months of lockdown, PwD missed on average 20.5 h of formal care in a month (P < 0.001) leading to an approximately 100% increase in informal care, which was particularly pronounced in personal hygiene (6.9 vs. 11.4 days in a month, P < 0.001) and supervision (9.2 vs. 17.6 days in a month; P < 0.001). Visiting caregivers increased by 1.9 days (SD ± 11.5), but co-residing caregivers increased their number of days providing ADL by approximately 7 days per month (β = 6.9; CI, 0.39–13.1, P < 0.05) after adjusting for PwD and caregiver demographics and clinical variables. Decrease in home nursing care was particularly visible for PwD living alone (− 6.1 vs. -1.3 h per month, P = 0.005). Higher cognitive function (β = − 0.64, CI, − 1.26 – 0.02, P = 0.044) was associated with reduction in home nursing service during the lockdown. Conclusion: The care situation for PwD changed dramatically in the early phase of the COVID-19 pandemic, especially for those living alone who received less support from homecare services and visiting caregivers. For future crises and the forthcoming post-pandemic period, health authorities must plan better and identify and prioritize those in greatest need. Trial registration: ClinicalTrials.gov; NCT04043364. [ABSTRACT FROM AUTHOR]

Background: Globally, pressure is increasing on health and social care resources due to the aging population and growing prevalence of dementia. Companion robots, such as Paro, demonstrate strong potential for helping reduce this pressure through reported benefits including reduced agitation, depression, loneliness, care provider burden, and medication use. However, we previously identified that user-centered design of robot pets is both essential and understudied. We observed that commonly used robot pets are poorly matched to end-user requirements, and that end users and developers of robot pets differ significantly in their perception of appropriate design. This may explain some of the contradictory outcome research and variance in results for robot pets, such as Paro. Objective: In response to the literature gap, we aimed to provide user-centered insights into the design of robot pets from key stakeholders to inform future robot development and the choice of robots for real-world implementation and research. We focused on understanding user requirements. Methods: We conducted a qualitative study with 65 participants from 5 care homes (26 care home residents, 29 staff members. and 10 family members). Care home residents formed groups of between 3 and 4 individuals and experienced free interactions with a range of 8 companion robots and toys, including Paro and more affordable alternatives. The robots provided had a range of esthetics, shell types, interactivity levels, and designs for comparison. Care staff and family members observed the interactions. All participants then engaged in focus groups within their stakeholder category to discuss preferences and user requirements in companion robot design. Both free interactions and focus groups were video and audio recorded, transcribed, and subjected to thematic analysis. Results: Care home residents, family members, and staff were open and accepting of the use of companion robot pets, with the majority suggesting that they would keep a device for themselves or the residents. The most preferred device was the Joy for All cat, followed by the Joy for All dog. In discussions, the preferred design features included familiar animal embodiment (domestic pet), soft fur, interactivity, big appealing eyes, simulated breathing, and movements. Unfamiliar devices were more often seen as toy-like and suitable for children, producing some negative responses. Conclusions: This work provides important and user-centered insights into future robot designs for care home residents by means of a comprehensive comparison with key stakeholders. This work strongly supports the use of familiar embodiment in future robot pet designs, with domestic cat and dog morphologies appearing most acceptable. The results have implications for future robot designs and the selection of robot pets for both research and real-world implementations. [ABSTRACT FROM AUTHOR]

Importance: Advance care planning (ACP), in which patients or their surrogates discuss goals and preferences for care with physicians, attorneys, friends, and family, is an important approach to help align goals with actual treatment. ACP may be particularly valuable in patients with advanced serious illnesses such as Alzheimer's disease and related dementias (ADRDs) for whom surgery carries significant risks. Objective: To determine the frequency, timing, and factors associated with ACP billing in Medicare beneficiaries with ADRD undergoing nontrauma inpatient surgery. Design: This national cohort study analyzes Medicare fee‐for‐service claims data from 2016 to 2017. All patients had a 6‐month lookback and follow‐up period. Setting: National Medicare fee‐for‐service data. Participants: All patients with ADRD, defined according to the Chronic Conditions Warehouse, undergoing inpatient surgery from July 1, 2016 to June 30, 2017. Exposures: Patient demographics, medical history, and procedural outcomes. Main Outcome: ACP billing codes from 6 months before to 6 months after admission for inpatient surgery. Results: This study included 289,428 patients with ADRD undergoing surgery, of whom 21,754 (7.5%) had billed ACP within the 6 months before and after surgical admission. In a multivariable analysis, patients of white race, male sex, and residence in the Southern and Midwestern United States were at the highest risk of not receiving ACP. Of all patients who received ACP, 5960 (27.4%) did so before surgery while 12,658 (52.8%) received ACP after surgery. Timing of ACP after surgery was associated with an Elixhauser comorbidity index of 3 or higher (1.23, p = 0.045) and major postoperative complication or death (odds ratio 1.52, p < 0.0001). Conclusions and Relevance: Overall ACP billing code use is low among Medicare patients with ADRD undergoing surgery. Billed ACP appears to have a reactive pattern, occurring most commonly after surgery and in association with postoperative mortality and complications. Additional study is warranted to understand barriers to use. [ABSTRACT FROM AUTHOR]

Importance: The Centers for Medicare & Medicaid Services' (CMS) National Partnership to Improve Dementia Care in Nursing Homes ("CMS National Partnership") focuses on reducing antipsychotic prescribing to long‐term care residents. Hospice enrollment is not an exclusionary condition for the antipsychotic quality measure reported by CMS. It is unclear how prescribing in hospice may have been impacted by the initiative. Objective: Estimate the association of the CMS National Partnership with trends in antipsychotic prescribing among long‐term care residents in hospice. Design: Interrupted time‐series analysis of a 100% Minimum Data Set sample with linked hospice claims from 2011 to 2017. Setting: Long‐term care nursing facilities. Participants: Older adults ≥65 residing in long‐term care (n = 3,741,379) and limited to those enrolled in hospice (n = 821,610). Main outcome: Quarterly prevalence of antipsychotic and other psychotropic (antianxiety, hypnotic, antidepressant) use among long‐term care residents; overall and among residents with dementia, stratified by hospice enrollment. Results: From 2011 to 2017, parallel declines in antipsychotic prescribing were observed among long‐term care residents enrolled and not enrolled in hospice (hospice: decline from 26.8% to 18.7%; non‐hospice: decline from 23.0% to 14.4%). Following the 2012 CMS National Partnership, quarterly rates of antipsychotic prescribing declined significantly for both residents enrolled and not enrolled in hospice care. Declines in antipsychotic prescribing were greater for residents with dementia, with similar rates among residents enrolled and not enrolled in hospice. Among residents with dementia enrolled in hospice, use of other psychotropic medication classes including antianxiety, antidepressant, and hypnotic use remained relatively stable over time. Conclusions and relevance: Declines in antipsychotic prescribing during the CMS National Partnership occurred among long‐term care residents in hospice, where use may be deemed clinically appropriate. Nursing homes are an important location for the provision of dementia end‐of‐life care and the drivers of potentially unintended reductions in antipsychotic use merits further investigation. [ABSTRACT FROM AUTHOR]

In recent years, robotic pets have been used by many countries worldwide as a method for treating behavioral and psychological symptoms of dementia (BPSD). The seal robot PARO was loaned intermittently to a distributed layout elderly housing with services over a seven-month period, during which it was observed that three residents with cognitive dysfunctions showed improvements in their BPSD and the nursing care load of the staff was reduced during the periods when PARO was present. The objective of this study is to investigate, through a case study, the effects of intermittent interaction with PARO on those with cognitive dysfunctions and the staff workers. The short version of the Dementia Behavior Disturbance Scale (DBD-13) was used as the medical outcome index, and the KJ method was used to analyze the qualitative data, such as staff reports and interviews. The results show that the DBD-13 total scores reduced during the periods when PARO was present and increased during the periods when PARO was absent. The KJ method yielded similar findings. The use of DBD-13 and the KJ method complemented the results of each other and increased the persuasive power of the findings. By using the KJ method, it was further determined that the workload of the staff was reduced, allowing them to recuperate, which reconfirmed the value of PARO. Further case studies will be undertaken in the future with the aim of constructing a methodology for implementing case studies. [ABSTRACT FROM AUTHOR]

We investigated robot-assisted recreation (RAR) for improving the quality of life (QoL) of older adults with dementia in an aged care facility. However, as a simple method to evaluate RAR has not been established at the field level, limited scientific data exists to show its effectiveness. To solve this problem, we studied a method to evaluate RAR based on speech analysis, which can reduce the burden on subjects (older adults) and data analysts. This study conducted both subjective and objective analyses of speech data. Subjective analysis based on the transcripts of speech data resulted in findings that supported and added to the knowledge of previous research, such as an increased willingness to participate in RAR, positive feelings toward the future, and interest in interacting with others. The results of the objective analysis based on the fundamental frequency (F0) demonstrated that there was a difference in the distribution of F0 during RAR and the interviews conducted before and after RAR. This study thus provides the prospect for easy evaluation of recreational activities, including RAR, in aged care facilities at the field level using speech analysis. [ABSTRACT FROM AUTHOR]

Robot therapy, a mental health care through interactions with robots, has attracted attention as a new method of dementia care. In particular, the therapeutic seal robot named "PARO" is being widely used. When using PARO in elderly facilities, caregivers called "handlers" encourage the elderly people to interact with PARO. However, the usage of PARO was left to the handlers itself. Therefore, there was no intended effect in certain cases. To solve this problem, this study aims to develop a method to record the behaviors of handlers and the reactions of elderly people during the robot therapy and a method to support planning by analyzing the recorded data. A Bayesian network was applied to analyze the relationship between the handler's behavior and the elderly people's reactions. To verify usefulness, the experiment was conducted at four elderly facilities between November 2019 and January 2020. The participants were 12 handlers and 21 elderly people. We observed the robot therapy using PARO for 20 min, and subsequently, conducted interviews. Consequently, a model that visualized the relationship between the handler's behaviors and the elderly people's reactions was obtained from 40 observed cases. The interviews confirmed that the model was useful for planning a robot therapy. [ABSTRACT FROM AUTHOR]

Background: Studies revealed the importance to assess dementia care dyads, composed of persons with dementia and their primary informal caregivers, in a differentiated way and to tailor support services to particular living and care circumstances. Therefore, this study aims first to identify classes of dementia care dyads that differ according to sociodemographic, care-related and dementia-specific characteristics and second, to compare these classes with regard to healthcare-related outcomes.Methods: We used data from the cross-sectional German DemNet-D study (n = 551) and conducted a latent class analysis to investigate different classes of dementia care dyads. In addition, we compared these classes with regard to the use of health care services, caregiver burden (BIZA-D), general health of the informal caregiver (EQ-VAS) as well as quality of life (QoL-AD) and social participation (SACA) of the person with dementia. Furthermore, we compared the stability of the home-based care arrangements.Results: Six different classes of dementia care dyads were identified, based on best Bayesian Information Criterion (BIC), significant likelihood ratio test (p <  0.001), high entropy (0.87) and substantive interpretability. Classes were labelled as "adult child parent relationship & younger informal caregiver", "adult child parent relationship & middle aged informal caregiver", "non family relationship & younger informal caregiver", "couple & male informal caregiver of older age", "couple & female informal caregiver of older age", "couple & younger informal caregiver". The classes showed significant differences regarding health care service use. Caregiver burden, quality of life of the person with dementia and stability of the care arrangement differed also significantly between the classes.Conclusion: Based on a latent class analysis this study indicates differences between classes of informal dementia care dyads. The findings may give direction for better tailoring of support services to particular circumstances to improve healthcare-related outcomes of persons with dementia and informal caregivers. [ABSTRACT FROM AUTHOR]

Most innovations developed to reduce the burden of Alzheimer disease and other related dementias (ADRD) are difficult to implement, diffuse, and scale. The consequences of such challenges in design, implementation, and diffusion are suboptimal care and resulting harm for people living with ADRD and their caregivers. National experts identified four factors that contribute to our limited ability to implement and diffuse of evidence‐based services and interventions for people living with ADRD: (1) limited market demand for the implementation and diffusion of effective ADRD interventions; (2) insufficient engagement of persons living with ADRD and those caring for them in the development of potential ADRD services and interventions; (3) limited evidence and experience regarding scalability and sustainability of evidence‐based ADRD care services; and (4) difficulties in taking innovations that work in one context and successfully implementing them in other contexts. New investments in the science of human‐centered design, implementation, and diffusion are crucial for meeting the goals of the National Plan to Address Alzheimer's Disease under the auspices of the National Alzheimer's Project Act. [ABSTRACT FROM AUTHOR]

Background: The National Institute on Aging, in conjunction with the Department of Health and Human Services as part of the National Alzheimer's Project Act, convened a 2020 National Research Summit on Care, Services, and Supports for Persons with Dementia and their Caregivers. This review article addresses research participation by persons living with dementia (PLWD) and their care partners in two different ways: as research participants with input on outcomes studied and as engaged research partners. Results: This article summarizes each of the topics presented at this Summit session, followed by reflection from the session panelists. Lee Jennings examined collection of outcomes directly from PLWD and the potential for individualized outcomes to enhance measurement in intervention trials. Ron Petersen discussed the impact of nomenclature on research and clinical care, and how and why investigators should be mindful of the connection between dementia nomenclature and the conduct of dementia research. Tabassum Majid examined strategies for engagement in research, including specific examples of involving PLWD and their care partners (including staff in assisted living and skilled nursing facilities), and the potential for this research engagement to improve our understanding of interventions in dementia. Conclusions: Research participation by PLWD and their care partners is evolving. This review summarizes three areas of opportunity and steps for researchers to work with PLWD and their care partners to design and conduct research that enhances knowledge based on what we learn from PLWD and their care partners, and creates knowledge with them. [ABSTRACT FROM AUTHOR]

Background: The National Institute on Aging, in conjunction with the Department of Health and Human Services as part of the National Alzheimer's Project Act, hosted a 2020 Dementia Care, Caregiving, and Services Research Summit Virtual Meeting Series on August 13, 2020. This article reflects three presentations related to Theme 6: Research Resources, Methods, and Data Infrastructure. Dr. Bynum discussed the challenges of identifying people for population‐ and healthcare‐based research, including how definitions of dementia have changed over time, the opportunities and challenges inherent in the use of electronic data sources, and the need to fit data collection strategies to research goals and questions. Dr. Travison provided an overview on the growing use of embedded pragmatic clinical trials (ePCTs) and how to enhance their impact in dementia research. Dr. Wendler presented on the ethical considerations relevant to consent for dementia research, including assessment of decisional capacity and the role of decisional surrogates. Conclusions: The availability of claims data, electronic health records, and other sources of "existing" data has made the use and development of ePCTs both easier and more appealing. Among other things, they offer advantages in terms of lower cost and generalizability to real‐world settings. This is turn has necessitated the use of informatic and analytic approaches to account for some of the limitations and complexities of such data, including multilevel clustering and the need to link and jointly analyze data from the person with dementia and those of their care partner. As part of this process, it will be important to broaden the scope of who is assessed for decisional capacity, make those assessments more study specific, and assist surrogates in making decisions based on what the individual would have chosen for themselves if capacitated (i.e., substituted judgment). [ABSTRACT FROM AUTHOR]

Objectives: Most studies have been concerned with the experiences and needs of spouses/partners and adult children of people with dementia. In this review, children and young people's lived experience of parental dementia was investigated. Findings will inform both researchers and professionals in the area of dementia care.Design: A systematic literature search was performed in CINAHL, PsychINFO, PubMed, Scopus, and Web of Science. A rigorous screening process was followed, and a checklist for qualitative and observational studies was used to evaluate the methodological quality of the studies. Narrative synthesis of the selected articles was carried out.Results: Twenty-one studies were included and a synthesis of the literature revealed six themes. The first theme concerned the difficulties in dealing with the diagnosis which was often preceded by a long period characterized by uncertainty, confusion, family distress, and conflicts. The second theme discussed changes in family relationships in terms of the role of children and young people in supporting both parents and keeping family together. The third theme described the impact of caring on children and young people who struggled to balance caring tasks and developmental needs. The fourth theme showed consequences on children and young people's personal lives in terms of education/career and life planning. The fifth theme illustrated main adaptation models and coping strategies. The last theme discussed the need for appropriate support and services based on a "whole family" approach.Conclusions: The included studies provide the basis for knowledge and awareness about the experience of children and young people with a parent with dementia and the specific needs of support for this population. [ABSTRACT FROM AUTHOR]

Background: Patients with dementia often have significant symptom burden and a progressive course of functional deterioration. Specialist palliative care referral may be helpful, but it is unclear who and when patients should be referred. We conducted a systematic review of the literature to examine referral criteria for palliative care among patients with dementia. Methods: We searched Ovid MEDLINE, Ovid Embase, Ovid PsycInfo, Cochrane Library, PubMed, and CINAHL databases for articles from inception to December 3, 2019, related to specialist palliative care referral for dementia. Two investigators independently reviewed the citations for inclusion, extracted the referral criteria, and categorized them thematically. Results: Of the 1788 citations, 59 articles were included in the final sample. We identified 13 categories of referral criteria, including 6 disease‐based and 7 needs‐based criteria. The most commonly discussed criterion was "dementia stage" (n = 43, 73%), followed by "new diagnosis of dementia" (n = 17, 29%), "medical complications of dementia" (n = 12, 20%), "prognosis" (n = 11, 19%), and "physical symptoms" (n = 11, 19%). Under dementia stage, 37/44 (84%) articles recommended a palliative care referral for advanced dementia. Pneumonia (n = 6, 10%), fall/fracture (n = 4, 7%), and decubitus ulcers (n = 4, 7%) were most commonly discussed complications to trigger a referral. Under prognosis, the time frame for referral varied from <2 years of life expectancy to <6 months. 3 (5%) of articles recommended "surprise question" as a potential trigger. Conclusions: This systematic review highlighted the lack of consensus regarding referral criteria for palliative care in patients with dementia and the need to identify timely triggers to standardize referral. See related Editorial by Blackstone et al. in this issue. [ABSTRACT FROM AUTHOR]

Background: Informal caregiving for people with dementia can negatively impact caregivers' health. In Asia-Pacific regions, growing dementia incidence has made caregiver burnout a pressing public health issue. A cross-sectional study with a representative sample helps to understand how caregivers experience burnout throughout this region. We explored the prevalence and contributing factors of burnout of caregivers of community-dwelling older people with dementia in Hong Kong (HK), China, and New Zealand (NZ) in this study.Methods: Analysis of interRAI Home Care Assessment data for care-recipients (aged ≥65 with Alzheimer's disease/other dementia) who had applied for government-funded community services and their caregivers was conducted. The sample comprised 9976 predominately Chinese in HK and 16,725 predominantly European in NZ from 2013 to 2016. Caregiver burnout rates for HK and NZ were calculated. Logistic regression was used to determine the adjusted odds ratio (AOR) of the significant factors associated with caregiver burnout in both regions.Results: Caregiver burnout was present in 15.5 and 13.9% of the sample in HK and NZ respectively. Cross-regional differences in contributing factors to burnout were found. Care-recipients' ADL dependency, fall history, and cohabitation with primary caregiver were significant contributing factors in NZ, while primary caregiver being child was found to be significant in HK. Some common contributing factors were observed in both regions, including care-recipients having behavioural problem, primary caregiver being spouse, providing activities-of-daily-living (ADL) care, and delivering more than 21 h of care every week. In HK, allied-health services (physiotherapy, occupational therapy and speech therapy) protected caregiver from burnout. Interaction analysis showed that allied-health service attenuates the risk of burnout contributed by care-recipient's older age (85+), cohabitation with child, ADL dependency, mood problem, and ADL care provision by caregivers.Conclusions: This study highlights differences in service delivery models, family structures and cultural values that may explain the cross-regional differences in dementia caregiving experience in NZ and HK. Characteristics of caregiving dyads and their allied-health service utilization are important contributing factors to caregiver burnout. A standardized needs assessment for caregivers could help policymakers and healthcare practitioners to identify caregiving dyads who are at risk of burnout and provide early intervention. [ABSTRACT FROM AUTHOR]

Introduction: The present pilot study examined to what extent the COVID-19 lockdown affected the behavioral and psychological symptoms of dementia (BPSD) in people with dementia and worsened their family caregivers' distress. The associations between changes in the BPSD of relatives with dementia (RwD) and in their caregivers' distress, and sense of social and emotional loneliness, and resilience were also investigated. Materials and Methods: Thirty-five caregivers of RwD attending formal healthcare services before the COVID-19 lockdown volunteered for the study, and were interviewed by phone during the lockdown. Caregivers completed the NeuroPsychiatric Inventory (NPI) to assess their care recipients' BPSD and their own distress, and two questionnaires assessing their social and emotional loneliness, and their resilience. Results: No clear changes emerged in either the BPSD of the RwD or the caregivers' distress during lockdown compared with before the pandemic. Caregivers reporting more frequent and severe BPSD in their RwD before the lockdown scored higher on emotional loneliness. Those reporting more frequent and severe BPSD under lockdown, especially men and those taking care of RwD with more advanced dementia, scored higher on both social and emotional loneliness. A significant negative correlation also emerged between caregivers' resilience and changes in their level of distress due to the lockdown, with female caregivers reporting greater resilience. Discussion: Our findings offer preliminary insight on the effects of loneliness and resilience, and on the influence of individual characteristics on the experience and consequences of informal caregiving for RwD in times of restrictions imposed by a pandemic. [ABSTRACT FROM AUTHOR]

Background: While the relation between care involvement of informal caregivers and caregiver burden is well-known, the additional psychosocial burden related to care involvement during the COVID-19 pandemic has not yet been investigated.Methods: A total of 1000 informal caregivers, recruited offline, participated in a cross-sectional online survey from April 21 to May 2, 2020. Questionnaires were used to assess COVID-19-specific changes in the care situation, negative feelings in the care situation, problems with implementation of COVID-19 measures, concerns/excessive demands, loss of support, change in informal caregivers' own involvement in care and problems with provision, comprehension & practicability of COVID-19 information, and to relate these issues to five indicators of care involvement (i.e., being the main caregiver, high expenditure of time, high level of care, dementia, no professional help). Binomial and multiple regression analyses were applied.Results: Across indicators of care involvement, 25.5-39.7% reported that the care situation rather or greatly worsened during the COVID-19 pandemic, especially for those caring for someone with dementia or those usually relying on professional help. In a multiple regression model, the mean number of involvement indicators met was associated with age (β = .18; CI .10-.25), excessive demands (β = .10, CI .00-.19), problems with implementation of COVID-19 measures (β = .11, CI .04-.19), an increase in caregiving by the informal caregivers themselves (β = .14, CI .03-.24) as well as with no change in the amount of caregiving (β = .18, CI .07-.29) and loss of support (β = -.08, CI -.16-.00). No significant associations with the mean number of involvement indicators met were found for gender, educational level, change in the care situation, negative feelings, and provision, comprehension & practicability of COVID-19 information.Conclusion: Those caregivers who perceived extensive care burden were those who suffered most during the pandemic, calling for structural support by the healthcare system now and in the future.Trial Registration: This article does not report the results of a health care intervention on human participants. [ABSTRACT FROM AUTHOR]

Background: This study investigated the differences in caregiver activity, caregiver burden, and awareness of both caregivers and patients with Alzheimer's disease (AD) across different Asian locations.Methods: This was a secondary analysis of a multi-national cohort study that aimed to assess caregiver activity and caregiver burden using the Caregiver Activity Scale (CAS) and Zarit Burden Interview (ZBI), respectively. Patients' awareness of their dementia diagnosis was assessed by asking the following yes/no question: "Do you have dementia?" Caregivers' awareness of the patient's dementia diagnosis was assessed by asking the following yes/no question: "Does your patient have dementia?"Results: In total, 524 caregivers of patients with AD from China, Hong Kong, South Korea, the Philippines, Singapore, Thailand, and Taiwan participated. The CAS and ZBI score were significantly different across most locations (p < 0.001 and p = 0.033, respectively). Overall, 56.6% of caregivers and 37.5% of patients had awareness of the dementia diagnosis, and the proportion of patients and caregivers with awareness were also different between each location (all, p < 0.001).Conclusions: Caregiving, caregiver burden, and the awareness of caregivers and patients were different across many Asian locations. With understanding of cultural differences, further public education on dementia could help increase the awareness of patients and caregivers and reduce caregiver burden.Trial Registration: ClinicalTrials.gov , NCT02262975 . Registered 13 October 2014. [ABSTRACT FROM AUTHOR]

Background and Objectives Dementia and central nervous system degeneration are common problems in aging societies with regard to the number of people affected and total medical expenses. Socially assistive robotic technology has gradually matured; currently, most scholars believe it can be used as companions in long-term care facilities and to work as caregivers alongside staff to improve the social interaction and mental state of older adults and patients with dementia. Therefore, this study measured the effect of the duration of exposure to socially assistive robots in older adults with dementia. Research Design and Methods Seven databases were searched up to February 2019 through the consultation of appropriate Internet sites and the use of criteria lists recommended by relevant experts. Randomized controlled trials comparing socially assistive robot use with a control group in older adults with dementia and using at least one of the primary outcomes of agitation, depression, and quality of life were included. Results Thirteen randomized controlled trials were identified from 873 articles, 7 of which were included in the meta-analysis. The pooled effect estimate from 3 trials with 214 participants revealed that the pet-type robot improved patients' agitation level, with a standardized mean difference of −0.37 (95% CI: −0.64 to −0.10, p <.01) and no heterogeneity (I 2 = 0%). The results also revealed that length of each session and pet-type robot exposure time per week were associated with reduced depression levels (β = −0.06, Q = 21.213, df = 1, p <.001 and β = −0.019, Q = 7.532, df = 1, p <.01, respectively). However, the results for quality of life were nonsignificant. Discussion and Implications Pet-type robot systems seem to be a potential activity in long-term care facilities for dementia care. Further research is warranted to establish a comprehensive intervention plan related to the use of pet-type robots. [ABSTRACT FROM AUTHOR]

The article discusses the advantages of virtual in-clinic memory care for dementia patients from rural North Carolina.

Background: The coronavirus disease 2019 (COVID-19) pandemic had a great impact on patients with cognitive decline or dementia. The lockdown period may exacerbate behavioral disorders and worsen distress of caregivers. The aim of this study is to evaluate the effectiveness of a family support intervention on the negative effects that the COVID-19 lockdown may have on patients and related caregivers. Methods: We recruited patients whose related caregivers had attended a family support course before the COVID-19 lockdown. The course was for family members of patients with cognitive decline or dementia and consisted in eight meetings during which the participants received information about the disease, the management of neuropsychiatric symptoms, and community resources and services available for patients with dementia. Data on cognitive decline, neuropsychiatric symptoms, and functional status had been collected before the course with the Mini-Mental State Examination (MMSE), the Neuropsychiatric Inventory (NPI), and the Instrumental (IADL) and Basic (BADL) Activities of Daily Living scales, respectively. The caregiving burden had been evaluated at the end of the course by means of the Zarit Burden Interview (ZBI). After the COVID-19 lockdown, a phone interview was made to compare neuropsychiatric symptoms, functional status, and caregiver's burden with the previous evaluation. Results: There were no significant changes before and after the COVID-19 lockdown in the mean NPI score. The IADL, BADL, and ZBI scores were significantly lower after lockdown than before. The BADL scores were inversely associated with ZBI scores. Thus, despite a worsening of patients' functional status, the caregivers' burden decreased significantly probably due to the positive effect of the family support intervention. Conclusions: Our study demonstrated that a complete family support intervention for caregivers of patients with cognitive decline or dementia can reduce the burden of care even in a particular negative period, such as the COVID-19 lockdown. [ABSTRACT FROM AUTHOR]

The co-design of a mobile health (mHealth) application for family caregivers of people with dementia to address functional disability care needs is presented. Participants included family caregivers of people with dementia, aged care nurses, physicians, occupational therapists, and information technology (IT) experts. The co-design process involved two phases: (1) needs assessment phase (an online survey and in-depth interviews with family caregivers and expert consultation); and (2) development of an mHealth application (content and prototype development). Data triangulation from phase one informed the content of the application. Data triangulation resulted in three content modules: "an overview of dementia and care," "management of daily living activities," and "caregivers' health and well-being." The content was based on contemporary literature, and care guidelines with input from family caregivers and dementia care experts. IT engineers developed the mHealth application. In this study, an Android-based mHealth application was designed to address the functional care needs of family caregivers and the co-design process ensured the incorporation of end-users' real-world experiences and the opinions and expertise of key stakeholders in the development of the application prototype.It is to be noted that before releasing the application into the app store, testing its feasibility and effectiveness is essential. [ABSTRACT FROM AUTHOR]