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Background: Family caregivers of people with dementia are a distinct group due to the particularly stressful and time-intensive care situation at home. Despite these challenges, involving them in research is crucial to better understand and address their specific needs. However, little evidence exists regarding a tailored approach for researchers for this group considering their situation at home., Methods: A scoping review will be conducted following the Joanna Briggs Institute methodological guidance, including the databases MEDLINE (PubMed), CINAHL, Scopus (Elsevier), and PsycINFO (EBSCO). The review will include family caregivers of people with dementia, regardless of age, gender, or ethnicity, who have been actively involved in research throughout the research process. Moreover, sources of evidence from any country in both English and German are eligible for inclusion. Sources will be screened by two independent reviewers. Results will be extracted using a tailored charting tool and presented in the final report according to the research questions and objectives., Discussion: Developing a tailored approach to involve family caregivers of people with dementia in research and development has profound importance to both the scientific community and the target group itself., Systematic Review Registration: Open Science Framework https://doi.org/10.17605/OSF.IO/PMZYV ., Competing Interests: Declarations Ethics approval and consent to participate N.A. Consent for publication N.A. Competing interests The authors declare that they have no competing interests., (© 2024. The Author(s).)

Background: Although the family plays a pivotal role in older adults' care, there is limited research on how evolving demographic trends affect older adults' support networks and how the trends vary by race. To fill this gap, we examine the influence of shifting family demographics on future care needs for older adults with dementia, emphasizing the unequal health and potential caregiving burdens by race in the United States., Methods: Using demographic models of kinship, we estimate the availability of potential caregivers, and dementia prevalence among one's kin by race, kin type, and the age of a focal person from 2000 to 2060. We introduce an index called the Dementia Dependency Ratio to assess dementia caregiving demands at the population level, taking into account the age and kinship structure of the population., Results: Our findings suggest that Black individuals tend to have more children, grandchildren, and nieces/nephews as they age. However, Black individuals also tend to have more kin with dementia compared to their White counterparts. This elevated prevalence of dementia among Black kinship networks counterbalances the advantage of having more kin as potential caregivers. A further projection analysis suggests that the racial gap in caregiving demand within the kinship network will widen in the next 4 decades if the racial gap in dementia prevalence remains unchanged., Conclusions: These findings emphasize the urgency of reducing racial inequality in dementia prevalence rates and increasing public support for families with extended members affected by dementia. With the shrinkage of nuclear families and population aging in the next few decades, extended family members may undertake more caregiving responsibilities for dementia. We call for a kinship perspective in understanding dementia care in future research., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America.)

Background: Respite care provides short-term relief for caregivers. Despite efforts to promote respite use among Black caregivers, little is known if disparities in respite use between Black and White dementia caregivers have decreased over time. We examined a trend nationally to see if more recent efforts may have helped reduce disparities in respite use., Methods: We used a repeated cross-sectional design, with the data from 2015, 2017, and 2021 of the National Health and Aging Trends Study and National Study of Caregiving. Our study sample included 764 (in 2015), 839 (in 2017), and 521 (in 2021) non-Hispanic White and Black caregivers who provided care to older adults living with dementia, representing weighted 5 157 569 (2015), 5 877 997 (2017), and 4 712 144 (2021) dementia caregivers nationally. We conducted logistic regression models to assess the differences in respite use between White and Black caregivers over time., Results: In 2015, Black dementia caregivers had a respite care use rate 11.6 percentage points (95% CI: -16.9 to -6.4) lower than that of White dementia caregivers. However, both in 2017 and 2021, the difference in the use of respite was not statistically significant, leading to a reduced or no gap in respite use between White and Black dementia caregivers. However, respite use remained low in both groups., Conclusions: Although the gap in respite use between Black and White dementia caregivers had been gradually narrowed over time, more efforts are needed to encourage more respite use among both groups through targeted efforts to address factors that hinder respite use., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Background: Occupational balance (OB) has been associated with health indicators in informal caregivers (CGs) such as well-being and subjective health. Consequently, maintaining an adequate OB could be crucial to providing adequate care without becoming overwhelmed, converting the condition of caregivers into an important aspect of public health as the ageing population increases. However, little is known about the factors influencing OB in CGs. Thus, this study aimed to explore the associated factors with the OB in CGs of persons with dementia., Methods: We cross-sectionally analysed data from 134 CGs and the individuals with dementia. We assessed CGs' OB using the Occupational Balance Questionnaire (OBQ). Simultaneously, several sociodemographic, clinical, and caregiving-related variables including CGs' burden and psychological distress were assessed. The association between the CGs' OB and those factors was explored through robust multiple linear regression., Results: Firstly, CGs that presented secondary education exhibited a decrement of 5.41 (CI95% = -10.62, -0.41; p-value = 0.03) OB points. Moreover, CGs with higher education experienced a more pronounced OB reduction (β = -7.74; 95%CI = -12.19, -3.29; p-value = < 0.001). Secondly, those CGs that were retired showed an OB increment of 5.52 (CI95% = 1.14, 9.38; p-value = 0.01). Thirdly, receiving assistance with household chores was associated with an OB increase of 5.80 (CI95% = 2.21, 9.38; p-value = 0.001). Fourthly, and regarding clinical measures, CGs experiencing overload or psychological distress were associated with an OB points decrement of 7.87 (CI95% = -12.51, -3.23; p-value = 0.001) and 9.17 (CI95% =-13.51, -4.84; p-value < 0.001), respectively. Finally, 1% increment in the Disability Assessment for Dementia obtained from the individuals with dementia was associated with an increment of 0.11 (CI95% = 0.04, 0.18; p-value = 0.002) OB points., Conclusions: This study identified several associated factors with the OB of CGs of persons with dementia. Specifically, we remarked that the CGs' education, employment status, household chores assistance, overload presence, psychological distress symptoms and the functional level of the person with dementia who cared for were important variables that should be considered when evaluating OB or creating OB-related interventions in CGs., (© 2024. The Author(s).)

Background: Home-based care (HBC) services have gained global attention for their potential to reduce caregiver burden among informal caregivers of persons with dementia (PwDs), who experience high caregiving intensity. However, research on HBC and its effects on dementia caregiving in China remains limited., Methods: Data were collected from primary caregivers of PwDs in Jiangsu Province, China. Caregiving intensity and HBC utilization were measured using self-developed instruments. Caregiver burden was assessed by The Burden Scale for Family Caregivers-short. Factor analysis was employed to decompose HBC services. Hierarchical multiple regression analysed the moderating effects of HBC on the relationship between caregiving intensity and burden., Results: A community sample of 318 caregiver and PwDs dyads was included. Caregivers averagely aged 62.16 years, with 61% being female, 84% not employed, and 66.2% having low income. PwDs aged 77.45 years averagely, with 52.8% being female and an average behavioural problems score of 42.27. Caregivers averaged 15.19 on response measures. The number and time spent on ADL-based tasks were positively associated with caregiver burden (β = 0.26, p < .001; β = 0.16, p < .01). However, attendance and time of supervision tasks were not significant predictors of burden. HBC services in China comprised four dimensions: Referral service, Household care, Skilled care, and Mental health service. While these did not directly predict caregiver burden, they moderated the associations between ADL-based tasks and caregiver burden (β=-0.25, p < .001; β=-0.24, p < .001; β=-0.23, p < .001; β=-0.20, p < .001), between time of ADL-based tasks and caregiver burden (β=-0.17, p < .001; β=-0.18, p < .001; β=-0.17, p < .001; β=-0.15, p < .01), and between the attendance at supervision tasks and caregiver burden (β=-0.11, p < .05; β=-0.20, p < .001; β=-0.17, p < .001; β=-0.17, p < .001). Only Referral service buffered the relationship between supervision time and caregiver burden (β = -0.13, p < .01)., Conclusion: Informal caregivers of PwDs face high caregiving intensity and burden. HBC services may moderate this relationship, with different services playing varying roles. Further research is essential to explore the impact of supervision levels and develop effective strategies to enhance HBC services for dementia caregiving in China., (© 2024. The Author(s).)

Objectives: To examine care partner preparedness in caring for recently hospitalized persons with dementia and care partner characteristics associated with preparedness at discharge, 2 months, and 6 months post discharge., Methods: Stepwise regression in a sample of 461 care partners of hospitalized persons with dementia who participated in the Fam-FFC clinical trial., Results: On average, care partners were 61.81 years old (SD = 14.19) and primarily female (n = 334, 72.5%). Care partners reported having some preparedness in general and it increased from discharge (23.75, SD = 6.78) to 2 months (24.5, SD = 6.49) and 6 months (26.35, SD = 6.73). Multiple care partner characteristics were associated with preparedness at discharge [age (b = -0.071; p < 0.001), burden (b = -0.283; p < 0.001), and depression (b = -0.284; p < 0.01)], 2 months [burden (b = -0.226; p < 0.001), strain (b = -0.144; p < 0.05), depression (b = -0.185; p < 0.05)] and 6 months [burden (b = -0.164; p < 0.01), strain (b = -0.183; p < 0.05), depression (b = -0.279; p < 0.01)] post discharge. While care partners' feelings of greater burden and depression were associated with lower preparedness at all time points, care partners' higher age was associated with lower preparedness at discharge only and care partners' feelings of higher strain was associated with lower preparedness at two and 6 months post discharge., Conclusion: Findings suggest the need to address care partners' feelings of burden, strain, and depression with tailored interventions and programs to optimize their preparedness in meeting unique care needs of hospitalized persons with dementia. Resilience-based interventions and programs can be useful to manage feelings of burden, strain, and depression and optimize preparedness., (© 2024 The Author(s). International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.)

Background Models that optimise the role of the general practice nurse have the potential to deliver cost-effective best-practice dementia care in the primary care setting. Patient experience is recognised as a vital contribution to the design, provision and evaluation of healthcare services. The aim of this study was to gain insights into the healthcare needs and experiences of people living with dementia and carers as relevant to the provision of dementia care by general practice nurses. Methods A qualitative design with semi-structured interviews was employed. Data were transcribed verbatim and thematically analysed. Six carers and five people living with dementia who received care from a general practice nurse in the previous 12months took part in the study. Results Five overarching themes were identified: (1) the general practice nurse and dementia care: a golden opportunity, (2) respectful communication: talk to me and hear what I am saying, (3) person-centred information: tell me what I want to know, (4) provide support: more than just information provision, and (5) include the carer: we are a team. Conclusion This study describes the experiences and healthcare needs of people living with dementia and their carer(s) with regard to the general practice nurse role. These findings can inform strategies to support the general practice nurse provision of dementia care that meet the healthcare needs of people living with dementia and carers.

Dementia, or major neurocognitive disorder, is defined as a decline in 1 or more cognitive domains that causes impairment in everyday function. Alzheimer disease is the most common type of dementia in the United States, with an estimated 6.9 million adults who have Alzheimer disease and are 65 years or older. This article discusses the latest findings in preventing cognitive decline. It also discusses dementia screening, diagnosis, treatment, and the quality of life for persons with dementia and their caregivers., Competing Interests: Disclosures: All relevant financial relationships have been mitigated. Disclosure forms are available with the article online.

Introduction: Approximately 2 million people in Italy are currently living with dementia or mild cognitive impairment (MCI), and 4 million are involved as family members or caregivers. Considering the significant impact of dementia, the Italian Ministry of Health entrusted the Italian National Institute of Health (Istituto Superiore di Sanità) with the development of a guideline within the Italian National Guideline System (Sistema Nazionale Linee Guida, SNLG) on the diagnosis and treatment of dementia and MCI. The main objective was to provide evidence-based recommendations aimed at reducing the variability and ensuring the appropriateness of clinical practices throughout the whole care process from identification and diagnosis to the end of life for people with dementia (PwD) or MCI and their families/caregivers., Methods: The GRADE-ADOLOPMENT approach was used to adopt, adapt and update the guideline developed by the National Institute for Health and Care Excellence in 2018 (NG97). The methodology was based on the Methodological Handbook produced by the SNLG. A multidisciplinary panel of 29 experts and four representatives of family members/caregivers discussed and approved 47 review questions. Of these, 34 questions were adopted from the NG97, and 13 were new questions, including 10 questions referring to MCI. Systematic literature reviews were performed for each question, and a team of methodological and clinical experts qualitatively assessed and summarised results from included studies based on the GRADE approach. To facilitate the implementation and dissemination of the contents of this guideline, a care pathway and a leaflet dedicated to PwD or MCI and their families/caregivers were also developed., Results: The literature review for this guideline included studies published up to November 2023. More than 1000 peer-reviewed publications were included, covering the following areas: (i) identification, diagnosis and post-diagnostic support; (ii) care models and care coordination; (iii) pharmacological interventions for cognitive symptoms; (iv) non-pharmacological interventions for cognitive symptoms; (v) non-cognitive symptoms, intercurrent illnesses and palliative care. The multidisciplinary panel discussed and approved 167 clinical practice recommendations and 39 research recommendations., Commentary: Italy's first National Guideline on dementia and MCI addresses diagnosis, treatment and care within the National Healthcare System. It includes recommendations on pharmacological and non-pharmacological approaches, and emphasises tailored interventions, comprehensive cognitive assessment, staff training and palliative care. The guideline also underlines the need to involve PwD in decision-making and supporting caregivers throughout the entire course of the disease., Conclusions: Structured strategies for the dissemination and implementation of the guideline will be defined within the Italian Fund for Alzheimer and other Dementias 2024-2026. An interactive care pathway and a leaflet dedicated to PwD and their carers are already available. The guideline will be updated starting January 2027, but early updates may be planned in case of breakthrough advancements., (© The Author(s) 2024. Published by Oxford University Press on behalf of the British Geriatrics Society.)

Introduction: Understanding the impact of biomarker-based dementia risk estimation in people with mild cognitive impairment (MCI) and their care partners is critical for patient care., Methods: MCI patients and study partners were counseled on Alzheimer's disease (AD) biomarker and dementia risk was disclosed. Data on mood, quality of life (QoL), and satisfaction with life (SwL) were obtained 1 week and 3 months after disclosure., Results: Seventy-five dyads were enrolled, and two-thirds of the patients opted for biomarker testing. None of the participants experienced clinically relevant depression or anxiety after disclosure. All dyads reported moderate to high QoL and SwL throughout the study. Patients reported more subthreshold depressive symptoms 1 week and lower QoL and SwL 3 months after disclosure. In patients, depression (odds ratio [OR]: 0.76) and anxiety (OR: 0.81) were significant predictors for the decision against biomarker testing., Discussion: No major psychological harm is to be expected in MCI patients and care partners after dementia risk disclosure., Trial Registration: This study is registered in the German clinical trials register (Deutsches Register Klinischer Studien, DRKS): http://www.drks.de/DRKS00011155, DRKS registration number: DRKS00011155, date of registration: 18.08.2017., Highlights: Patients with mild cognitive impairment (MCI) and study partners were counseled on Alzheimer's disease (AD) biomarker-based dementia risk estimation. About two-thirds of patients opted for biomarker testing and received their dementia risk based on their AD biomarker status. Patients who decided in favor or against CSF biomarker testing differed in psychological features. We did not observe major psychological harm after the dementia risk disclosure. Coping strategies were associated with better subsequent mood and well-being in all participants., (© 2024 The Author(s). Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.)

Introduction: Dementia has become an increasingly pressing issue in healthcare systems, and acute care settings such as hospitals have been shown to be particularly problematic for people living with dementia. People living with dementia are hospitalised at higher rates than those without and often have poor experiences and outcomes of hospitalisation. To support the evolution of hospital systems to better meet the needs of people living with dementia, it is important to consider the relationship between the context of the hospital and the experiences of people living with dementia and their caregivers. The term context refers to the environment and conditions that shape experiences and includes elements such as policies, procedures, design and social norms. A greater understanding of the relationship between the hospital context and the experiences of people living with dementia will support the future development of interventions to modify contextual elements to improve the experiences of people living with dementia. Our aim was to explore the relationship between the experiences of people living with dementia and their caregivers in hospital, and the contextual elements of the hospital., Methods: In this interpretive descriptive study, we conducted interviews with people living with dementia and caregivers of people living with dementia about their experiences in hospital. Interviews were conducted with people living with dementia (n = 3), caregivers of people living with dementia (n = 8) and one dyad of a person living with dementia and their caregiver (n = 1) about the hospitalisation of the person living with dementia. Using inductive and deductive methods of analysis, we describe contextual factors that shape their experiences., Results: Our findings demonstrate how the hospital context shaped the experiences of people living with dementia and their caregivers while the person living with dementia was hospitalised. The themes reflect elements of the hospital context: communication systems, the value of caregivers, the focus on acute physical needs, staff capacity, the physical environment and normalised practices. The findings suggest that there are aspects of the hospital context that can be modified to influence the experiences of people living with dementia and their caregivers., Conclusion: This study demonstrates how the context of hospital shapes the experiences of people living with dementia and their caregivers and points to aspects of the context that health system leaders could explore to begin to improve the capacity of hospitals to support people living with dementia., Implications for Practice: The study provides evidence of the need for health system leaders and practitioner to explore how the hospital context shapes the experiences of people wtih dementia and their caregivers, and begins to explore ways that contextual changes can improve their experiences., (© 2024 The Author(s). International Journal of Older People Nursing published by John Wiley & Sons Ltd.)

Background: Following the successful completion of feasibility and acceptability studies of internet-delivered self-help Acceptance and Commitment Therapy for family carers of people with dementia (iACT4CARERS), a full-scale randomised controlled trial (RCT) evaluating its clinical and cost effectiveness will be conducted. This paper describes the design and protocol for a multi-site, parallel, single-blind, 2-arm RCT evaluating the clinical and cost effectiveness of iACT4CARERS plus treatment-as-usual (TAU) in comparison to TAU alone for reducing anxiety in family carers of people with dementia., Methods: 496 family carers aged ≥18 years, who are caring for a person with dementia, will be recruited from national healthcare services, general practices and community groups in England. Participants randomised to the intervention arm will receive iACT4CARERS over 12 weeks. Participants will complete outcome measures at baseline (0 weeks) and at 12-weeks and 24-weeks post-randomisation. The primary outcome and timepoint will be anxiety at 12 weeks. Secondary outcomes will include psychological flexibility, depression, and cost-effectiveness (cost per quality adjusted life years). Primary analyses will be by intention-to-treat and data will be analysed using linear mixed models. Fidelity and quality of implementation will be assessed and contextual factors associated with variation in outcomes identified in a process evaluation., Conclusion: If iACT4CARERS is found to be effective and affordable, this self-help intervention, including minimal contact with minimally trained therapists, has the potential to be rolled out widely within healthcare services in the UK, reducing inequality in access to psychological services among this population., Clinical Trials Registration: ISRCTN registry identifier ISRCTN45995725., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

Background and Objectives: Dental care utilization is an important, yet understudied aspect of healthcare in informal caregivers of persons with dementia. This study examined how caregiving-related characteristics are associated with dental care utilization among U.S. informal caregivers of persons with dementia and further examined gender differences., Research Design and Methods: Pooled data came from the Behavioral Risk Factor Surveillance System in 2016, 2018, 2020, and 2022. A nationally representative sample of informal caregivers (n = 3,909) was included. Dental care utilization was "yes" versus "no" within the past year. Caregiving-related characteristics included caregiver role, intensity of care, duration of care, and type of care. Logistic regressions and subgroup analyses were conducted., Results: In total sample, compared to adult child caregivers, spousal caregivers were 28% less likely to visit a dentist (odds ratio [OR] = 0.72; 95% confidence interval [CI] = 0.56, 0.94). Caregivers who provided care for more than 20 hr per week were 18% less likely to visit a dentist (OR = 0.82; 95% CI = 0.69, 0.98). In subgroup analyses, intensity of care was a barrier to dental care utilization for female caregivers (OR = 0.78; 95% CI = 0.62, 0.98), whereas caregiver role such as spousal caregiver (OR = 0.59; 95% CI = 0.39, 0.89) or other relative caregiver (OR = 0.70; 95% CI = 0.50, 0.99) was a barrier to dental care utilization for male caregivers., Discussion and Implications: The findings highlight the importance of caregiving-related characteristics in dental care utilization and suggest gender-tailored interventions., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

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

Objectives: This review examined the evidence for interventions to prevent the abuse of people living with dementia in the community., Methods: The articles were retrieved from 2000 to 2023 from six databases, including MEDLINE via PubMed, CINAHL Plus via EBSCO, EMBASE, ProQuest Medical Library, Web of Science, and Scopus. The research articles that focused on finding the effectiveness of interventions for preventing abuse of people living with dementia in community settings were included in this review. The review included randomized controlled trials and pre-test post-test trials only. The quality appraisal of the eligible studies was done using ROB 2 and ROBINS II. The findings were tabulated and narratively synthesised., Results: Out of 1831 articles, only three were included in this review. Only two RCTs were included in this efficacy review. Both the studies showed that the interventions were not effective in reducing abuse. The studies utilised family caregiver interventions like psychological interventions and online supportive education. The review identified psychological interventions with some evidence. Another study was a quasi-experimental study that used dialectical behaviour therapy as an intervention to reduce abuse occurrence. The study showed low evidence and focused only on reporting of elder abuse as an outcome., Conclusion: This review found very few studies and was not able to draw a conclusion on the effectiveness of interventions for abuse in people living with dementia. Given the paucity of research, there is a clear need to identify how to overcome the challenges faced in elder abuse research and further refine the development of approaches to reduce elder abuse among people living with dementia in community settings., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Objective: Care partners of persons living with dementia perform significant financial planning in partnership with the person for whom they care. However, research is scarce on care partners' confidence and experiences with financial planning. The purpose of this study was, first, to quantify care partners' confidence across different financial planning topics. We sought to understand whether income, education, relationship type, and years of experience are related to care partners' level of confidence in financial planning. Second, we sought to better understand the reasons for these confidence ratings by examining care partners' experiences of financial planning., Methods: We conducted an online survey that asked a combination of quantitative and qualitative questions to understand care partners' confidence and experiences with financial planning. Participants were nationally recruited care partners of persons living with dementia. Multivariate linear regression was used to understand different subgroups' levels of confidence in each financial planning topic. Inductive thematic analysis was used to understand qualitative data., Results: The financial planning topics in which participants ( N = 318) felt the least confident were: options when there is not enough money to provide care; tax deductions available to cut care costs; and sources of money from government programs for which the care recipient is eligible. Differences in confidence were observed among care partners with lower incomes, less experience, and caring for a parent. Qualitatively, participants described the challenges of care budgeting and protecting personal finances; confusion about long-term care insurance and accessing resources; and, among confident care partners, reasons for this sense of preparedness., Conclusions: These results underscore the need for tailored interventions and technologies that increase care partners' confidence in specific aspects of financial planning, including long-term care insurance, available financial support, and what to do when money runs out., Competing Interests: Declaration of conflicting interestsThe author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Author CE is the CEO and Founder of Whiplash Technology and developed CareVirtue. Author MZ is the Caregiver Support Officer for Whiplash Technology and supported development of CareVirtue. MZ is also an Associate for HFC, which is a 501c3 with the mission of Bringing Light to Alzheimer’s and is a member of the Alzheimer’s Impact Movement, which is an advocacy affiliate of the Alzheimer’s Association.

Background and Objectives: English and Welsh laws require "contemporaneous" consent to sexual relations, often precluding "non-capacituos" people living with advanced dementia from these human interactions., Research Design and Methods: The views of people living with dementia, carers, professionals, and over-55s were explored on implications of current laws on sexuality in dementia. Thirty-five participants from England were recruited through purposive selective sampling. Audio-taped semistructured interviews were transcribed and thematically analyzed with each stakeholder group coded separately., Results: Common themes across stakeholders were (i) law reform needed due to their hammer-like effect ignoring the individual; (ii) dissonant theme of needing the law for protection; (iii) negative impact of denied intimacy on individuals and partners; (iv) support for Advance Decisions on Intimacy with caveats; (v) less support for involvement of Court of Protection and Powers of Attorney; (vi) call for review of capacity concept with support for an assent model. People living with dementia described shame and stigma associated with policing of their sexuality and perception of being singled out for protection and intrusion into their lives. For informal carers (mostly wives), the theme of "what about me" emerged, demonstrating that for the long-term partnered, this is a couple's issue., Discussion and Implications: Practical implications of this study include need to address ageism and ableism; human rights education for society and professionals; starting point of presumed capacity for sexual relations with consensus on how and when this should be rebutted; and care homes' certification requirements should incorporate assessment of the relationship health of their residents., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America.)

The demanding nature of caring for relatives with Alzheimer's disease and related dementias (ADRD) can lead to family caregiver burden and poor health. The stigmatization of people with ADRD can also impact caregivers' stress, while their support-seeking strategies may mitigate negative impacts of burden on their health. To examine hypothesized relationships, the present study considered whether different dimensions of ADRD family stigma influenced the association between a care recipient's behavioral symptoms and their family caregiver's perceived burden and if direct support seeking explained a connection between caregiver burden and well-being. Family caregivers ( n  = 375) completed a Qualtrics survey. Path analysis revealed ADRD behavioral symptoms predicted both caregiver and layperson forms of stigma. Layperson stigma also intervened between behavioral symptoms and caregiver burden. Direct support seeking mediated the association between caregiver burden and well-being. Findings underscore the utility of including stigma within ADRD caregiver stress models and studying caregiver health from network and communication perspectives.

Objectives: A large gap exists in the development of culturally sensitive interventions to reduce stress related to dementia care among Chinese Americans, one of the fastest growing minority populations in the United States. We developed and pilot tested the feasibility and preliminary efficacy of a peer mentoring program for Chinese American dementia caregivers., Method: A pilot randomized controlled trial was conducted among 38 Chinese American caregivers in New York City. Four outcome variables-caregiving competence, loneliness, caregiver burden, and depressive symptoms-were measured at baseline and 3-month and 9-month follow-ups. The study protocol and preliminary results are available at clinicltrial.gov [NCT04346745]., Results: The feasibility of the intervention was high, as indicated by an acceptable retention rate, fidelity, and positive feedback from caregivers and mentors. Compared with the control group, the intervention group had greater reductions in scores for loneliness at 3-month follow-up and for caregiver burden and depressive symptoms at 9-month follow-up. We did not find significant differences in caregiving competence between the two groups., Conclusion: The results indicated the high feasibility and potential efficacy of empowering existing human resources of experienced caregivers in the same ethnic community to improve the mental health of Chinese caregivers. Further research is needed to test the efficacy in a larger sample of this population.

Person-centered care for people living with dementia has been associated with improved functional ability and quality of life, yet little is known about person-centered care in the home settings. Our objective was to explore home care worker perspectives on providing person-centered care for their clients living with dementia. Using secondary qualitative analysis of 22 semi-structured interviews with home care workers, we identified themes related to the Dementia Initiative's person-centered dementia care framework (Initiative, 2013). We found that home care workers acknowledged their client's personhood while also advocating for their needs. However, home care workers encountered barriers to providing person-centered care, including role limitations and challenging dynamics with other home care workers and family caregivers. This analysis can inform further approaches to better integrate home care workers in person-centered healthcare teams and improve how the needs of people living with dementia are identified and met in the home., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. This article does not represent the views of the U.S. Department of Veterans Affairs or the United States government.

Objectives: To systematically evaluate the effects of telehealth interventions on the caregiver burden and mental health of caregivers for people with dementia (PWD)., Method: Relevant randomized controlled trials (RCTs) of telehealth interventions on caregivers were extracted from nine electronic databases (PubMed, The Cochrane Library, Web of Science, Embase, CINAHL, SinoMed, CNKI, WanFang, and VIP). The retrieval time was from inception to 26 July 2023., Results: Twenty-two articles with 2132 subjects were included in the final analysis. The meta-analysis demonstrated that telehealth interventions exerted a significant effect in reducing caregiver burden (SMD: -0.14, 95 % CI: -0.25, -0.02, p  = 0.02), depression (SMD = -0.17; 95%CI: -0.27, -0.07, p  < 0.001) and stress (SMD = -0.20, 95%CI: -0.37, -0.04, p  = 0.01). However, no statistically significant effect was observed on anxiety (SMD = -0.12, 95%CI: -0.27, 0.03, p  = 0.12). Moreover, subgroup analysis showed that tailored interventions were associated with more evident reductions in depression (SMD = -0.26; 95%CI: -0.40, -0.13, p  < 0.001) than standardized interventions (SMD = -0.08; 95%CI: -0.22, 0.06, p  = 0.25). In addition, telehealth was effective in relieving depression in Internet-based (SMD = -0.17, 95%CI: -0.30, -0.03, p  = 0.01) and Telephone-based group (SMD = -0.18, 95%CI: -0.34, -0.02, p  = 0.03), while there was no significant difference in the Internet and Telephone-based group (SMD = -0.18, 95%CI: -0.54, 0.18, p  = 0.32)., Conclusion: Telehealth could effectively reduce the burden and relieve the depression and stress of caregivers of PWD, while its effect on anxiety requires further research. Overall, telehealth has potential benefits in dementia care.

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.

Aim(s): To evaluate the literature to inform and propose a conceptual definition for dementia friendly in the context of hospitalization., Methods: The Walker & Avant method for concept analysis was utilized for this review., Data Sources (include Search Dates): Initial search conducted June 2022. Repeated search conducted in February 2023. Databases for the literature search include Scopus, PubMed, CINAHL, PsycINFO, and AGELINE., Results: Five attributes of the concept of dementia friendly in the context of hospitalization were identified including: staff knowledge/education, environmental modification, person-centred care, nursing care delivery and inclusion of family caregivers. Based on these attributes a conceptual definition is proposed., Conclusion: A clarified definition for dementia friendly in the context of hospitalization will aid in understanding the concept, provide guidance for hospitals seeking to implement dementia-friendly interventions and benefit researchers aiming to study the impact of such programs. REPORTING METHOD: n/a., Patient or Public Contribution: No Patient or Public Contribution., (© 2024 The Authors. Journal of Advanced Nursing published by John Wiley & Sons Ltd.)

Objectives: This explorative cross-country qualitative study aims to describe experiences of receiving a dementia diagnosis and experiences of support following a diagnosis in Australia, Canada, the Netherlands and Poland., Method: Qualitative study using projective techniques during online focus groups, online and telephone interviews with people with dementia and caregivers., Results: Twenty-three people with dementia and 53 caregivers participated. Qualitative content analysis revealed five themes; (1) 'Coming to terms with dementia' helped people deal with complex emotions to move forward. (3) 'The social network as a source of support' and (4) 'The challenges and realities of formal support' and impacted 'Coming to terms with dementia'. (2) 'Navigating life with dementia as a caregiver' highlights caregiver burden and was impacted by (4) 'The challenges and realities of formal support'. People were (5) 'Self-caring and preparing for tomorrow' as they focused on maintaining current health whilst planning the future. Despite differences in healthcare and post-diagnostic support systems, there were more similarities across countries than differences., Conclusion: Across countries, formal support and support from friends and family are crucial for people with dementia and caregivers to come to terms with dementia and maintain carer wellbeing to ultimately live well with dementia.

Background: Multicomponent interventions with carers of people with dementia demonstrate positive effects on the health and quality of life for carers and care recipients. The World Health Organization's iSupport for Dementia is an evidence-based online psychoeducation programme for carers. However, the programme was mainly implemented as a self-learning tool which might have limited its positive effects on carers and care recipients. Evidence for online multicomponent interventions with carers that incorporates the iSupport programme remains unknown., Objectives: This study aimed to partner with health and social care organisations to evaluate the effects of a facilitator-enabled online multicomponent Chinese iSupport programme, which included psychoeducation using the iSupport programme, facilitator-enabled carer support groups and access to care services., Design: A multicentre randomised controlled trial., Settings and Participants: Participants were family carers in Australia and greater China. We recruited participants to the study from 1st November 2021 to 30th June 2022., Methods: The intervention group received the Chinese iSupport programme delivered online. The intervention lasted for 6 months. Our primary outcome was carers' quality of life. Our secondary outcomes were carers' self-efficacy, social support, distress reactions to changed behaviours, care recipients' frequency of changed behaviours, quality of life, unplanned hospital admissions, emergency department presentations and permanent admissions to nursing homes. The outcomes were measured at baseline (T0), 6 months (T1) and 9 months (T2). We applied a multivariate mixed effect linear regression model to capture the group effect, time effect and their interaction., Results: In total, 266 eligible family carers agreed to participate and were randomly assigned to an intervention group (n = 131) or a usual care group (n = 135). Most carers were women with a mean age of 53 years. The intervention group showed a statistically significant higher score of mental-health-related quality of life (mean difference = 4.1, 95 % CI: 1.5, 6.8, p = 0.002), self-efficacy in controlling upsetting thoughts (mean difference = 7.1, 95 % CI: 2.2, 12.0, p = 0.005) and lower score of distress reactions to changed behaviours (mean difference = -0.1, 95 % CI: -0.3, -0.03, p = 0.012) than the usual care group at T1., Conclusion: The facilitator-enabled online multicomponent Chinese iSupport programme demonstrated positive effects for carers on mental health-related quality of life, controlling upsetting thoughts and distress reactions to changed behaviours of people with dementia., Trial Registration: This study is registered in the Australia New Zealand Clinical Trials Registry on 12th March 2021 (ACTRN12621000276853)., Tweetable Abstract: The facilitator-enabled online multicomponent Chinese iSupport programme improved family carers' mental health-related quality of life, control of upsetting thoughts and distress reactions to changed behaviours of people with dementia., Competing Interests: Declaration of Competing Interest No conflict of interest has been declared by the authors., (Copyright © 2024 The Author(s). Published by Elsevier Ltd.. All rights reserved.)

Worldwide, 50 million people are living with dementia. As more individuals develop dementia while still working, dementia will increasingly become a workplace issue and a societal concern. Interventions targeted at work retainment, can reduce, and postpone the loss of cognitive functioning following dementia. However, there is a small body of research focused on recommendations for work interventions for people with dementia. The aim of this mixed-methods review was to investigate experiences of work following a dementia diagnosis from the perspective of people with dementia, their relatives, employers, co-workers and HR-professionals, with the objective of formulating recommendations for work interventions for people with dementia. A mixed-method approach guided the review. 16 original studies published between 1989 to 2023 were included, with a collective sample of 684 participants. The review shows that it is possible to live and work well with dementia, if collaborative solutions are continuously negotiated to meet the needs of the person with dementia and the workplace, and with attention to possible contextual enablers and barriers. The review highlights four key elements for successful work interventions for people with dementia: 1) Person-centered Approach, 2) Contextual Relevance, 3) Knowledge-based and 4) Dynamic Approach., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

According to the data released by the Taiwan Ministry of Health and Welfare in 2021, in 2019, 235,000 patients sought medical treatment for dementia-related diseases at the National-Health-Insurance-participating hospitals and clinics for more than three outpatient visits or had been hospitalised, and the number had increased by 15,000 from the previous year (Ministry of Health and Welfare, 2021). This implies that families are affected, causing tremendous physical, psychological, and economic pressures and burdens on the caregivers and families of the patient. The estimated social cost of caring for dementia families increased from $1.3 trillion in 2019 to $2.8 trillion in 2030 (World Health Organisation, 2021). Thus, long-term care for the dementia population has become a critical issue in medical care and social services in Taiwan and worldwide. In 2017, Taiwan Ministry of Health and Welfare has been starting Dementia care policy with 10 years long-term care plan through set up dementia care centre. The purpose of this study is to investigate the effectiveness of dementia care centre for reducing the burden and improving the quality of life for caregivers of dementia patients. This pilot study adopts a quasi-experimental research design and uses purposive sampling to select in house informal caregivers of dementia patients who are part of a dementia collaborative care programme at a medical centre in the northern region and were willing to participate in this study. Upon enrolment in the study, subjects were given a pre-test, followed by a one-hour face-to-face nursing consultation and assessment after 2 weeks. Subsequently, a telephone nursing consultation was conducted once a month for 3 months. Two weeks after completing all counselling sessions, a post-test was administered to measure the caregiver burden with The Chinese version of the Caregiver Burden Inventory and the quality of life for caregivers with The 'Chinese Health Questionnaire CHQ-12'. After providing case management and nursing counselling, the total caregiver burden score significantly decreased from an average of 40.1 (SD = 21.6) at the pre-test to an average of 38.6 (SD = 21.4) at the post-test, reaching statistical significance (p < 0.01). The results of this study showed that providing dementia caregivers with case management and nursing consultation services helps improve the overall caregiver burden (particularly emotional burden and physical burden) as well as the health questionnaire scores. However, the social burden and time burden did not improve after receiving case management and counselling among caregivers; instead, post-test scores of these aspects were significantly higher., (© 2024 John Wiley & Sons Ltd.)

Objective: Caregivers' ambivalent feelings toward the care recipient have been found to be associated with depression and anxiety. There is no research linking caregivers' ambivalent feelings and cardiovascular risk. This study was aimed to analyze longitudinally the effect of ambivalence on caregivers' cardiovascular risk, defined by circulating levels of high-sensitivity C-reactive protein, interleukin-6 (IL-6), and D-dimer., Method: Participants were 121 dementia family caregivers who were assessed three times during a 2-year period. Sociodemographic and health variables, behavioral and psychological symptoms of dementia (BPSD), ambivalent feelings, and C-reactive protein (CRP), IL-6, and D-dimer values were assessed. Mixed linear models were used to analyze the association between variables, including testing whether ambivalent feelings moderated the links between BPSD and biomarkers., Results: Increases over time in D-dimer were associated with increases in ambivalence, older age, female gender, and body mass index (BMI). Increases over time in CRP were associated with increases in BMI, older age, female gender, and the interaction of BPSD with caregivers' ambivalent feelings. The moderation analysis showed that increased BPSD was significantly associated with increased CRP when caregivers experienced high levels of ambivalence ( p = .006). In contrast, BPSD were not significantly associated with CRP when caregivers experienced low levels of ambivalence ( p = .73). Increases in IL-6 were associated with female gender and BMI. The tested model explained 42.85%, 33.15%, and 5.36% of longitudinal variance in CRP, D-dimer, and IL-6 levels, respectively., Conclusion: The findings suggest that high ambivalent feelings are relevant for understanding cardiovascular vulnerability in dementia caregivers. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Dementia caregiving involves a challenging and complex process, especially for immigrant families. Using a qualitative method, this study provides an in-depth exploration of caregiving experiences among Korean American caregivers of people living with dementia. Based on various sampling strategies, 16 Korean American caregivers of family members/relatives with dementia were recruited in the greater Los Angeles area. Guided by the stress process model and the constant comparative method, themes and subthemes were derived and categorized into four domains: (1) background/context; (2) perception/appraisal; (3) resources/coping, and (4) caregiver burden/reward. Findings suggest that intervention efforts should focus on educating and training dementia caregivers.

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., (© 2024 The Author(s). Journal of Clinical Nursing published by John Wiley & Sons Ltd.)

Objectives: Despite growing interest, the cost-effectiveness of eHealth interventions for supporting quality of life of people with dementia and their caregivers remains unclear. This study evaluated the cost-effectiveness of the FindMyApps intervention, compared to digital care-as-usual. FindMyApps aims to help people with dementia and their caregivers find and learn to use tablet apps that may support social participation and self-management of people with dementia and sense of competence of caregivers., Method: A randomised controlled trial (Netherlands Trial Register NL8157) was conducted, including people with mild cognitive impairment (MCI) or mild dementia and their informal caregivers (FindMyApps n  = 76, digital care-as-usual n  = 74). Outcomes for people with MCI/dementia were Quality-Adjusted Life-Years (QALYs), calculated from EQ-5D-5L data and the Dutch tariff for utility scores, social participation (Maastricht Social Participation Profile) and quality of life (Adult Social Care Outcomes Toolkit), and for caregivers, QALYs and sense of competence (Short Sense of Competence Questionnaire). Societal costs were calculated using data collected with the RUD-lite instrument and the Dutch costing guideline. Multiple imputation was employed to fill in missing cost and effect data. Bootstrapped multilevel models were used to estimate incremental total societal costs and incremental effects between groups which were then used to calculate Incremental Cost-Effectiveness Ratios (ICERs). Cost-effectiveness acceptability curves were estimated., Results: In the FindMyApps group, caregiver SSCQ scores were significantly higher compared to care-as-usual , n  = 150, mean difference = 0.75, 95% CI [0.14, 1.38]. Other outcomes did not significantly differ between groups. Total societal costs for people with dementia were not significantly different, n  = 150, mean difference = €-774, 95%CI [-2.643, .,079]. Total societal costs for caregivers were significantly lower in the FindMyApps group compared to care-as-usual, n  = 150, mean difference = € -392, 95% CI [-1.254, -26], largely due to lower supportive care costs, mean difference = €-252, 95% CI [-1.009, 42]. For all outcomes, the probability that FindMyApps was cost-effective at a willingness-to-pay threshold of €0 per point of improvement was 0.72 for people with dementia and 0.93 for caregivers., Conclusion: FindMyApps is a cost-effective intervention for supporting caregivers' sense of competence. Further implementation of FindMyApps is warranted.

Context: People with late-stage Alzheimer's diseases and related dementias (ADRD) have high risk for postacute complications and readmission; however, minimal research describes hospital transitional care., Objective: Within the context of the ongoing ADRD-PC clinical trial, the purpose of this study was to describe the content and quality of transitional care of people with ADRD., Methods: Descriptive mixed methods using data from a retrospective chart review and interviews with palliative care social workers and a nurse providing transitional care in the ADRD-PC clinical trial., Results: Of 40 dyads of people with late-stage ADRD and their caregivers, palliative care plans were documented for 29 patients (73%); completed postdischarge calls in 72 hours were made for 39 (98%) caregivers and calls in 2 weeks were made for 33 (78%). The content of postdischarge care was promoting continuity, identifying resources, helping caregivers feel heard, troubleshooting problems, and providing grief support. Challenges during transitional care were limited time to engage caregivers in hospital-based palliative care, educate caregivers about palliative care plans, coordinate care after transfers to long term care, and the scarcity of community ADRD resources. Facilitators of high quality transitional care were continuity of staff who saw the patient or caregiver across hospital and postacute contacts, caregiver understanding of goals of care, written palliative care plans, and resources for postdischarge care., Conclusion: Findings indicate high quality dementia-specific transitional care occurs when staff have resources, such as ADRD training and care planning template, to pull the hospital palliative care plan forward into the postdischarge destination, help families fit the plan to new circumstances, and manage strain and grief related to changes in health and function., (Copyright © 2024 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

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., Competing Interests: Declaration of conflicting interestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Objectives: To compare the experiences of people with dementia living alone or with others and how these may change over two years., Design: We analysed longitudinal data from three assessment waves, one year apart, in the British IDEAL cohort., Setting: Participants with mild-to-moderate dementia were recruited through National Health Service providers, where possible with a family caregiver, and interviewed at home., Participants: The current analyses include 281 people with dementia living alone and 1,244 living with others at baseline; follow-up data were available for 200 and 965 respectively at time 2 and 144 and 696 respectively at time 3. For those living alone, 140 nonresident caregivers contributed at baseline, 102 at time 2 and 81 at time 3. For those living with others, 1,127 family caregivers contributed at baseline, 876 at time 2 and 670 at time 3., Measurements: Assessments covered: cognitive and functional ability; self-reported perceptions of health, mood, social engagement, quality of life, satisfaction with life and well-being; use of in-home and community care; and transitions into residential care., Results: People living alone tended to have better cognitive and functional ability and were more frequent users of in-home care. However, they experienced poorer physical, social, and psychological health and reduced quality of life, satisfaction with life, and well-being. These differences persisted over time and rates of transition into residential care were higher., Conclusions: To facilitate continuing in place for people with dementia living alone, a dual focus on supporting functional ability and add ressing psychosocial needs is essential in the context of an enabling policy framework., Competing Interests: DISCLOSURES The authors declare no conflicts of interest. ‘Improving the experience of Dementia and Enhancing Active Life: living well with dementia. The IDEAL study’ was funded jointly by theEconomic and Social Research Council (ESRC)and theNational Institute for Health and Care Research (NIHR)through grantES/L001853/2. Investigators: L. Clare, I.R. Jones, C. Victor, J.V. Hindle, R.W. Jones, M. Knapp, M. Kopelman, R. Litherland, A. Martyr, F.E. Matthews, R.G. Morris, S.M. Nelis, J.A. Pickett, C. Quinn, J. Rusted, J. Thom. ESRC is part of UK Research and Innovation (UKRI). ‘Improving the experience of Dementia and Enhancing Active Life: a longitudinal perspective on living well with dementia. The IDEAL-2 study’ is funded by Alzheimer's Society, grant number 348, AS-PR2-16-001. Investigators: L. Clare, I.R. Jones, C. Victor, C. Ballard, A. Hillman, J.V. Hindle, J. Hughes, R.W. Jones, M. Knapp, R. Litherland, A. Martyr, F.E. Matthews, R.G. Morris, S.M. Nelis, C. Quinn, J. Rusted. This report is independent research supported by the National Institute for Health and Care Research Applied Research Collaboration South-West Peninsula. The views expressed in this publication are those of the authors and not necessarily those of the ESRC, UKRI, NIHR, the Department of Health and Social Care, the National Health Service, or Alzheimer's Society. The support of ESRC, NIHR and Alzheimer's Society is gratefully acknowledged., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

Objectives: To examine the associations between participant intensity of engagement with a text message intervention, CuidaTEXT , and socio-demographic factors, acceptability measures, and clinical outcomes among Latino/a caregivers of individuals with dementia., Methods: CuidaTEXT is a six-month, bilingual, and bidirectional intervention. We enrolled 24 Latino/a caregivers in a one-arm feasibility trial. Participants received approximately one automatic daily text message and could engage with the intervention by texting specific keywords (e.g. STRESS to receive messages about stress-coping), and by chat-texting with a live coach. We used metrics and psychometric scales to quantify variables., Results: Participants sent a total of 1847 messages to CuidaTEXT . Higher intensity of engagement was associated with higher intervention satisfaction ( r  = 0.6, p  = 0.007), as were several other acceptability outcomes. We found no associations between intensity of engagement with CuidaTEXT and sociodemographic or clinical outcomes ( p  > 0.05)., Conclusion: Encouraging more intense engagement with CuidaTEXT might lead to higher levels of satisfaction with the intervention. However, it is possible that those who are highly satisfied, engage more intensely with CuidaTEXT . Future research should determine the directionality of these associations to optimize text message interventions., Clinical Implications: Creating more opportunities to increase the intensity of text message engagement with caregiver support interventions may improve caregiver satisfaction with them.

Background: Promoting options for aging in place (AIP) has broad appeal to policymakers and professionals providing services to persons living with dementia (PWD). However, the benefits or burdens of AIP likely vary among individuals and families. We sought to describe factors influencing decision-making to age in place versus seek a higher level of residential care for PWD., Methods: A qualitative study was undertaken as part of a larger mixed-methods study utilizing semi-structured interviews with PWD, family care partners, and dementia clinicians. Interview transcripts were analyzed using qualitative content analysis with constant comparison. Sample size was determined by thematic saturation within subgroups., Results: We conducted 74 interviews among 14 PWD, 36 care partners, and 24 clinicians. Preferences for AIP were driven by (1) desire to preserve independence, (2) a sense that the "best care" is delivered by loved ones and in a familiar environment, (3) distrust and fear of care facilities, and (4) caregiver guilt. PWD and care partners frequently considered moving from home as a "last resort" and wanted to avoid planning for future care needs. Many decisions to move were reactive and triggered by patient safety events, physical dependency, or the loss of caregiver. Proactive decision-making was facilitated by (1) prior experience witnessing the challenges of caring for a person with advanced dementia in the home; and (2) having substantial financial resources such that participants could seek major home adaptations or avoid "lower quality" institutions., Conclusions: Decisions regarding care setting for PWD frequently do not feel like a choice and are made under imperfect conditions. Programs using AIP as an outcome measure should recognize the various patient-centered and non-patient-centered factors that influence such choices, and interventions should be designed to promote more informed and equitable decision-making for care setting in dementia., (© 2024 The Author(s). Journal of the American Geriatrics Society published by Wiley Periodicals LLC on behalf of The American Geriatrics Society.)

Background: Family caregivers of dementia patients face significant challenges, including managing their own emotional responses. Understanding factors influencing expressed emotion (EE) is crucial for effective support interventions. The aim of this study was to explore and describe changes in EE among family caregivers of dementia and its associated factors at different time points over 3 months., Methods: A 3-month observational study was conducted in Japan. We collected demographically detailed data on family caregivers currently providing care, including care burden, relationship closeness, and depression. We assessed EE using the validated Family Attitude Scale (FAS). After adjustment for multiple confounding factors, multivariate linear regression analysis was performed to assess factors affecting EE at various time points. Linear regression analysis with generalised estimating equations was used to assess associations between 3-month time-varying EE and burden, intimacy, and depression., Results: Fifty-six family caregivers completed the study. Changes in FAS scores did not show statistical differences over 3 months. It is worth noting that the degree of relationship closeness and care burden are important influencing factors of EE in both cross-sectional analysis and longitudinal analysis., Conclusions: Early identification of risk factors can aid in developing interventions aimed at preventing high levels of EE in the dementia family, thereby mitigating their detrimental effects. Tailored interventions are essential to enhance caregiver well-being and cultivate positive caregiver-patient relationships., (© 2024 Japanese Psychogeriatric Society.)

Informal caregivers are crucial to the care of persons with dementia (PWD), but their role is often reported as challenging. This study aims to examine caregiver stress and depressive symptoms among informal caregivers of PWD using a modified transactional stress and coping model. Path analysis was conducted among a sample of informal caregivers of PWD in Singapore (n = 281) using information on functional dependence and memory and behavioral problems of PWD, and self-reported measurements on caregivers' knowledge of dementia, perceived positive aspects of caregiving, social support, coping patterns, caregiving self-efficacy, caregiving burden and depressive symptoms. The initial model reflecting our assumptions for the transactional stress and coping model showed a poor fit (model 1 - CFI = 0.858, TLI = 0.665, RMSEA = 0.118). Logical modifications were made until sufficient model fit was achieved (model 2 - CFI = 0.987, TLI = 0.955, RMSEA = 0.043). We then removed the insignificant paths in model 2 and obtained our final model (model 3 - CFI = 0.990, TLI = 0.974, RMSEA = 0.033). The final model supported our hypotheses, with some adjustments. This study advances our understanding of caregiver distress by modifying the transactional stress and coping model, including (1) the key role of caregiver self-efficacy in the primary appraisal process, (2) the dynamic assessment of coping resources across all stages of the model, and (3) the importance of coping patterns. Future studies could explore the generalizability of these findings., (© 2024. The Author(s).)

Background: Adult day programs aim to facilitate aging in place by supporting the health and well-being of persons with dementia and providing respite to their caregivers. However, studies on the effects of day programs are inconclusive, and we especially lack insights into the context conditions and mechanisms of day programs that may produce different outcomes for different groups of persons with dementia and their caregivers. Our objective was to conduct a realist review, synthesizing research on day programs to develop program theories explaining how and why day programs do or do not produce positive or negative outcomes for different groups of persons with dementia, and caregivers., Methods: We identified 14 literature reviews (including 329 references published between 1975 and 2021) on adult day programs. From this initial pool of studies, we will include those that focused on day program attendees with dementia or meaningful cognitive impairment, and/or their caregivers, and that report how day program contexts (C) and mechanisms (M) bring about outcomes (O) for attendees and caregivers. We will extract CMO statements (i.e., narratives that explain how and why day programs do or do not bring about certain outcomes for whom and under what circumstances). Using additional focused searches, citation mapping, citation tracking, and discussions with our researcher and expert team members, we will identify additional references. CMO statements will be synthesized, transformed into hypotheses, and linked and visualized to form program theories. Using focus groups and the James Lind Alliance Priority Setting Partnership method, we will discuss and prioritize our CMO statements and refine our program theories with 32 experts (older adults, caregivers, Alzheimer societies, caregiver organizations, day program staff and managers, and health system and policy decision makers)., Discussion: By identifying essential elements and processes of day programs and related knowledge gaps, this study will generate much-needed knowledge to leverage the full potential of day programs so they can provide appropriate care, preventing premature institutionalization, and unnecessary acute and primary care use. This will ultimately improve the quality of life of persons with dementia and their caregivers, alleviate caregiver burden, and reduce social costs., Systematic Review Registration: PROSPERO CRD42024504030., (© 2024. The Author(s).)

Background: Most people living with dementia live in their own home supported by family carers. One of the most challenging problems they face is managing toilet-use and continence. Carers have repeatedly asked for better advice from healthcare professionals. The purpose of this systematic review was to inform the development of an intervention to support healthcare professionals to provide existing continence management advice to the carers of people living at home with dementia. It aimed to identify and synthesise lessons from the development and evaluation of interventions, involving primary or community healthcare professionals, to support the provision of management advice aimed at supporting people living at home with dementia and their carers with activities of daily living. Due to a lack of relevant continence or toilet-use interventions, this included, but was not limited to, toileting or continence care., Methods: Literature (February 2009-November 2022) was searched using five databases: MEDLINE (Ovid); PsycINFO (Ovid); EMBASE (Ovid); Cumulative Index to Nursing and Allied Health Literature (CINAHL) (EBSCO); and Cochrane Central Register of Controlled Trials (CENTRAL). Empirical studies using a variety of methodologies were included and thus the quality of papers appraised using the Mixed-Methods Appraisal Tool. No studies were excluded based on quality. A narrative synthesis was undertaken., Results: Twelve articles reporting on 10 interventions were included. Most comprised the provision of online resources only, although some combined these with online or face-to-face contact with healthcare professionals. A variety of methodologies was utilised including randomised controlled trials. The quality of included studies was variable. Six main themes were identified: mode of delivery; targeted and tailored resources; content, design and navigation; credibility; user involvement in the development and evaluation of information resources; and role of professionals and organisations., Conclusions: Despite the urgent need to better support people living at home with dementia and their carers, this review highlights the paucity of studies reporting on interventions delivered within primary and community healthcare contexts to provide management advice aimed at supporting this population with activities of daily living. This review has identified important considerations that will potentially aid the development, delivery and evaluation of such interventions., Systematic Review Registration: PROSPERO International Prospective Register of Systematic Reviews CRD42022372456., (© 2024. The Author(s).)

Background: Caregiver stress can pose serious health and psychological concerns, highlighting the importance of timely interventions for family caregivers of people with dementia. Single-session mindfulness-based interventions could be a promising yet under-researched approach to enhancing their mental well-being within their unpredictable, time-constrained contexts. This trial will evaluate the effectiveness and feasibility of a blended mindfulness-based intervention consisting of a single session and app-based follow-up in reducing caregiver stress., Methods/design: The study is a single-blinded randomized controlled trial with two arms (intervention versus an education session on dementia care) and assessments at baseline, 8 weeks, and 6 months. The eligibility criteria include: family caregivers aged 18 years or older; providing care for an individual with a confirmed medical diagnosis of dementia for at least 3 months prior to recruitment, with a minimum of 4 hours of daily contact; and exhibiting a high level of caregiver stress. The intervention comprises a 90-minute group-based session with various mindfulness practices and psychoeducation. Participants will receive a self-practice toolkit to guide their practice over a duration of 8 weeks. Sharing activities will be implemented through an online social media platform. The primary outcome is perceived caregiving stress. The secondary outcomes include depressive symptoms, positive aspects of caregiving, dyadic relationship, trait mindfulness, and neuropsychiatric symptoms of care recipients. The feasibility outcomes include eligibility and enrollment, attendance, adherence to self-practice, and retention, assessed using mixed methods., Discussion: The study will contribute to the evidence base by investigating whether a single-session mindfulness intervention is effective and feasible for reducing caregiver stress among family caregivers of people with dementia., Trial Registration: ClinicalTrials.gov, NCT06346223. Registered on April 3, 2024., (© 2024. The Author(s).)

Background: The research community has historically failed to enroll diverse groups of participants in dementia clinical trials. A unique aspect of dementia care research is the requirement of a study partner, who can attest to the care recipient's clinical and functional capacity. The aim of this study is to assess racial and ethnic differences and the importance of various trial considerations among dementia caregivers, in their decision to participate in clinical research as study partners., Method: We embedded a vignette about a hypothetical dementia clinical trial in a nationally representative survey of U.S. dementia caregivers, oversampling non-Hispanic Black and Hispanic caregivers. Dementia caregivers were asked about their willingness to participate in the trial with their care recipient and rated the importance of nine considerations in hypothetical decisions to participate. Caregiver demographic characteristics were analyzed as predictors of trial participation in a base demographic model. In a second reasons model caregiver demographic characteristics and the rated importance of the nine considerations were separately analyzed as predictors; both models used survey-weighted logistic regression., Result: The sample consisted of 610 dementia caregivers, including 156 non-Hispanic Black and 122 Hispanic caregiver participants. In the base demographic model, hypothetical trial participation was negatively associated with older caregiver age (OR (odds ratio) = 0.72, p = < 0.001). In the reasons model, the rated importance of a social responsibility to help others by participating in research was significantly associated with participation (OR = 1.56, p = 0.049), while the importance of the possibility of the care recipient experiencing serious side effects was negatively associated with participation (OR = 0.51, p = 0.003). In both models there was no significant difference in hypothetical participation between non-Hispanic Black and non-Hispanic White caregivers, or between Hispanic and non-Hispanic White caregivers., Conclusion: Hispanic and non-Hispanic Black dementia caregivers were not less likely than non-Hispanic White dementia caregivers to participate in a hypothetical dementia clinical trial. Our study suggests that failures to recruit diverse populations in dementia clinical research are not attributable to less willingness among members of underrepresented groups but may instead reflect structural barriers and historic exclusion from trial participation., (© 2024. The Author(s).)

Identifying effective and accessible interventions for family caregivers of persons with dementia (PWD) is crucial as the prevalence of dementia increases in Asia. This study investigated the efficacy of a telephone-intervention on the reduction in caregiver burden, as well as depressive and anxiety symptoms among family caregivers (FCs) of PWD in Malaysia. A single-blinded randomized controlled trial was carried out with 121 FCs of PWD selected from memory or psychiatry clinics in three tertiary hospitals in Malaysia, who were randomly allocated into the intervention or control group. The intervention group received the psychoeducational intervention delivered by healthcare staff via telephone for 10 sessions over 12 weeks. The outcome of the intervention was measured by the Malay version of the Zarit Burden Interview and the Hospital Anxiety and Depression Scale at baseline and post-intervention. An intention to treat analysis shows that caregiver burden, anxiety symptoms, and psychological distress among FCs in the intervention group decreased by 7.57 units ( p < 0.001), 2.46 units ( p < 0.001), and 2.98 units ( p = 0.011), respectively, at post-intervention, compared to the differences from baseline to post-intervention in the control group. Policies aimed at integrating the telephone-intervention into memory/psychiatry clinics in Malaysia may help FCs of PWD to reduce their caregiver burden and stress while caring for a family member with dementia.

Informal caregivers play a crucial role in the care of individuals with dementia, and their caregiving may significantly impact their own health and well-being. This cross-sectional survey study focuses on the perceived importance of various types and characteristics of formal support in a convenience sample of caregivers aged 65 years or older (N = 175) caring for a spouse with dementia. Participants completed a questionnaire containing 17 items describing different types of support and 12 items describing different characteristics of support, rating their importance. The questionnaire also contained questions on various caregiving-related factors. Principle components analysis (PCA) was carried out on the importance ratings, separately, on the types of support items and the characteristics of support items. Each PCA produced three components. For types of support, they were Proficiency and Opportunity, Supportive Structures, Flexible Counselling. For characteristics of support, they included Respectful and Competent, Timely Support, and Accessible and Acceptable. The three characteristics of the support components all had higher mean importance ratings than the three types of support components. The content of some components indicated that while spouse caregivers rate support for their caregiving needs as important, they may not always differentiate their own needs from those of their partner with dementia. The negative impact of caregiving was the factor most strongly and consistently associated with the components' importance ratings. This study emphasizes the need for health and social care providers to address the unique needs of spouse caregivers while simultaneously ensuring the delivery of quality care for individuals with dementia.

Introduction: Receiving a diagnosis of dementia is a seminal moment in many people's lives. It can be associated with anger and grief for both the person with dementia and their network. Despite this, there is no provision for emotional support to help people affected by dementia manage the impact of receiving that diagnosis. As such, a postdiagnostic intervention to help people process and adjust to a diagnosis of dementia is needed. This protocol describes the initial work to be undertaken as part of a Programme Development Grant. The aims are to synthesise evidence for existing interventions, understand the implementation context and establish an advisory board., Methods and Analyses: Phase 1 will consist of two systematic reviews to synthesise research evidence for existing interventions in related areas. Phase 2 will consist of two qualitative research studies. Study 1 is a UK-wide qualitative survey to understand the current lived experience of receiving a diagnosis and postdiagnostic support. Study 2 is a local qualitative study in which three groups of stakeholders will be asked about the perceived barriers and facilitators to implementing a postdiagnostic intervention in Natuional Health Services (NHS). In Phase 3, an advisory group of people living with dementia, carers and other professionals will be established to provide advice and feedback and contribute to the codevelopment of the initial intervention., Ethics and Dissemination: Health Research Authority, 15 July 2024. All data will be held in accordance with North East London NHS regulations, who act as sponsor of this development work. We will engage with policy professionals in Study 2 (Phase 2) and through this network disseminate our findings to facilitate policy change. The use of coproduction to ensure people with dementias voices are heard throughout this work will result in impact in health and well-being., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY. Published by BMJ.)

Background: Stress related to Alzheimer disease and related dementias (ADRD) is common, particularly among those who care for persons with challenging behaviors and personality or mood changes. Mindfulness and self-compassion programs are efficacious for managing stress. The skills of mindfulness and self-compassion, however, must be integrated with behavioral management skills in order to effectively improve caregiver stress., Objective: In this study, we aimed to describe the development of the Mindful and Self-Compassionate Care (MASC) program, the first program that combines mindfulness and self-compassion with behavioral management skills to decrease caregiver stress, and its evaluation in the Supporting Our Caregivers in ADRD Learning (SOCIAL) study., Methods: Using the National Institutes of Health (NIH) stage model, we describe 3 phases of work encompassing NIH Stages 1A and 1B. In phase 1, we conducted 5 focus groups (N=28) of stressed individuals caring for persons with ADRD and challenging behaviors. Rapid data analysis informed the development of a 6-week online intervention. Phase 2 (NIH stage 1A) includes an open pilot (N>10) with optional exit interviews. Phase 3 (NIH stage 1B) is a feasibility randomized controlled trial of the intervention versus the Health Education Program control. Primary outcomes focus on feasibility with secondary outcomes encompassing acceptability, credibility, fidelity, and signals of preliminary efficacy. Phase 1 follows traditional recommendations for qualitative analyses (at the point of thematic saturation) which was achieved after 5 focus groups (N=28). For the phase 2 open pilot, up to 12 participants will be recruited. For the phase 3 feasibility study, recruitment of 80 caregivers will allow the assessment of feasibility benchmarks. Data for phase 1 included 5 focus groups. In phases 2 and 3, data collection will occur through REDCap (Research Electronic Data Capture; Vanderbilt University) surveys and an optional qualitative exit interview. Analyses will include hybrid inductive-deductive analyses for qualitative data and assessment of changes in our intervention targets and outcomes using t tests and correlation analyses., Results: In phase 1, caregivers reported interest in a brief, online stress management program. Participants held misconceptions about mindfulness and self-compassion, but after detailed explanation thoughts, these skills could be helpful when directly linked to implementation during caregiving routines. Phases 2 and 3 will be completed by the end of 2025., Conclusions: We describe the protocol for the Supporting Our Caregivers in ADRD Learning study, as well as the development and feasibility testing of the Mindful and Self-Compassionate Care intervention. Future work will include a fully powered efficacy-effectiveness randomized controlled trial., Trial Registration: ClinicalTrials NCT05847153; https://clinicaltrials.gov/study/NCT05847153; and ClinicalTrials.gov NCT06276023; https://clinicaltrials.gov/study/NCT06276023., International Registered Report Identifier (irrid): DERR1-10.2196/58356., (©Aniyah Travis, Arden O’Donnell, Natalia Giraldo-Santiago, Sarah M Stone, Daniel Torres, Shelley R Adler, Ana-Maria Vranceanu, Christine S Ritchie. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 11.10.2024.)

Background: As dementia progresses, patients exhibit various psychological and behavioral symptoms, imposing a significant burden on families and society, including behavioral and psychological symptoms of dementia. However, caregivers lack professional care knowledge and skills, making it difficult for them to effectively cope with the diverse challenges of caregiving. Therefore, it is necessary to provide caregivers with professional knowledge and skills guidance., Objective: This study aimed to analyze the impact of internet-based training on behavioral and psychological symptoms of dementia in patients, and explore how this training model affects the caregiving abilities and caregiving burden of the family caregivers of patients with dementia., Methods: Using a consecutive enrollment method, the Department of Geriatrics at Zhejiang Hospital (Zhejiang, China) recruited 72 informal caregivers of patients with dementia. These caregivers were randomly divided into an intervention group and a control group, with 36 participants in each group. The intervention group underwent caregiver skill training via a web-based platform, whereas the control group initially received face-to-face follow-up guidance and was subsequently offered web-based training after 6 months. To assess the effectiveness of the intervention program, we used the Neuropsychiatric Inventory Questionnaire (NPI-Q), the Chinese version of the Zarit Burden Interview (CZBI), and the Sense of Competence in Dementia Care Staff Scale (SCIDS) for evaluations conducted before the intervention, 3 months after the intervention, and 6 months after the intervention., Results: Between July 2019 and December 2020, a total of 66 patients successfully completed the intervention and follow-up. After 6 months of intervention, the NPI-Q score of the intervention group was 3.18 (SD 3.81), the CZBI score was 10.97 (SD 5.43), and the SCIDS score was 71.88 (SD 4.78). The NPI-Q score of the control group was 8.09 (SD 8.52), the CZBI score was 30.30 (SD 13.05), and the SCIDS score was 50.12 (SD 9.10). There were statistically significant differences in NPI-Q (P=.004), CZBI (P<.001), and SCIDS scores (P<.001) between the intervention group and the control group. Repeated measures analysis of variance showed that compared with before the intervention, there were statistically significant differences in CZBI (P<.001) and SCIDS (P<.001) scores 3 months after the intervention, while the difference in NPI-Q (P=.11) scores was not significant. The total scores of NPI-Q (P<.001), CZBI (P<.001), and SCIDS (P<.001) were significantly improved 6 months after the intervention. In addition, the results of the covariance analysis showed that after excluding the time effect, the web-based training intervention significantly reduced the NPI-Q score (-2.79, 95% CI -4.38 to -1.19; P<.001) of patients with dementia and the CZBI score (-13.52, 95% CI -15.87 to -11.16; P<.001) of caregivers, while increasing the SCIDS score (12.24, 95% CI 9.02-15.47; P<.001)., Conclusions: Internet-based training could significantly reduce the level of behavioral symptoms in older patients with dementia and alleviate the burden on caregivers, enhancing their caregiving abilities. Our results confirmed the effectiveness and feasibility of web-based training, which was of great significance in providing caregiving knowledge training for informal caregivers of persons with dementia., (© Yanhong Xie, Shanshan Shen, Caixia Liu, Hong Hong, Huilan Guan, Jingmei Zhang, Wanqi Yu. Originally published in JMIR Aging (https://aging.jmir.org).)

Background: Tube feeding is discouraged among older adults with advanced dementia; nevertheless, caregivers often find feeding decisions challenging to navigate., Aim: This study aims to gain a comprehensive understanding of tube feeding among community-dwelling older adults with advanced dementia in Singapore and its relationship to older adult quality of life (QoL) and caregiver psychological distress., Methods: We use a convergent mixed-methods design, synthesising analysis of qualitative caregiver interviews (n = 25) and two-year prospective, longitudinal cohort survey data (n = 215, 1018 observations)., Results: Findings from the qualitative interviews revealed caregivers' expectations of reduced QoL for older adults with feeding tubes and their own distress related to making feeding decisions and fears prompting plans to tube-feed. Sixteen percent of community-dwelling older adults with advanced dementia relied on feeding tubes during the two-year study period. Adjusting for potential confounding and using instrumental variables estimation, tube feeding was associated with reduced older adult QoL (P < .05) and increased caregiver anxiety and depression (P < .10)., Conclusion: Consistent with expert guidelines, we found that tube feeding was associated with significantly reduced QOL among older adults living with dementia and increased distress among caregivers relative to those of older adults without feeding tubes. Despite caregivers' recognition of reduced QOL associated with older adult use of feeding tubes, many expressed angst related to feeding choices. Our findings suggest the need for decision tools to support caregivers in making informed decisions concordant with their values., (© The Author(s) 2024. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For permissions, please email: journals.permissions@oup.com.)