Dementia care landscape in Nepal: Understanding the context, barriers, and opportunities for the development of a national dementia care plan.

OBJECTIVE: This study was conducted to comprehensively understand the context, barriers, and opportunities for improving dementia care, treatment, and support. The objective is to guide the development of a national dementia care plan. METHODOLOGY: This document review was conducted by analyzing literature available in the public domain, including scientific publications, project documents/reports, media reports, and hospital records. Additionally, annual reports published by the Department of Health Services, national census and demographic and health survey reports, Old Age Homes, and other relevant government reports were examined. Firsthand information was gathered from relevant stakeholders based on the World Health Organization's situational analysis framework for dementia plans. This framework encompasses four domains: Policy context (national ministries, legislation, policies, strategies, plans related to dementia, mental health, aging, and disability), service delivery assessment (health and social care workforces, services, support and treatment programmes, and promotion of awareness and understanding), and epidemiological indicators (prevalence and incidence rates of dementia, risk factors). Ethical clearance was obtained from the Institutional Review Committee (IRC) of B.P. Koirala Institute of Health Sciences (IRC no.2658/023). RESULTS: Existing policies in Nepal inadequately address the needs of people with dementia and their caregivers. Concerning health services, the Government of Nepal provides financial subsidies to individuals diagnosed with dementia; however, numerous hurdles impede access to care. These obstacles include geographical and structural barriers, an inefficient public healthcare system, weak governance, financial constraints, low awareness levels, stigma, and inadequate workforce. Furthermore, the absence of robust nationally representative epidemiological studies on dementia in Nepal hampers the development of evidence-based plans and policies. Similarly, there are no interventions targeted at caregivers of people with dementia, and no initiatives for dementia prevention are in place. CONCLUSIONS: This review underscores the urgent need to formulate a comprehensive national dementia care plan to address the growing challenges. Key priority action areas include the integration of dementia care into primary healthcare services, training workforce to provide the care, increasing awareness, mitigating stigma, developing caregiver support programs, and initiating high-quality research to inform evidence-based policymaking.

Attitudes to long-term care in India: A secondary, mixed methods analysis.

OBJECTIVES: In India, globalisation is purported to have contributed to shifting family structures and changing attitudes to long-term care (LTC) facility use. We investigated the attitudes to and usage frequency of LTC in India. METHODS: We conducted secondary analyses of: (a) The Moving Pictures India Project qualitative interviews with 19 carers for people with dementia and 25 professionals, collected in 2022, exploring attitudes to LTC; and (b) The Longitudinal Ageing Study in India (LASI) 2017-2018, cross-sectional survey of a randomised probability sample of Indian adults aged 45+ living in private households. RESULTS: We identified three themes from qualitative data: (1) LTC as a last resort, describes how LTC could be acceptable if care at home was "impossible" due to the person's medical condition or unavailability of the family carer, for example, if family members lived overseas or interstate. (2) Social expectations of care at home from family members and paid carers and; (3) Limited availability of LTC facilities in India, especially in rural localities, and the financial barriers to their use. Of 73,396 LASI participants, 40 were considering moving to LTC; 18,281 had a parent alive, of whom 9 reported that their father, and 16 that their mother, lived in LTC. LTC use was rare. While a third of participants with a living parent lived in urban areas, 14/24 of those with a parent in LTC lived in an urban area, supporting our qualitative findings that LTC is mainly accessed in urban areas. CONCLUSIONS: Preference for intergenerational community care combined with limited availability and societal stigma contribute to low rates of LTC use among Indian families. Future social policies should consider how to plan for greater equity in strengthening care at home and in the community, and bolstering respite and LTC services as a last resort.

The Prevalence of Missing Incidents and Their Antecedents Among Older Adult MedicAlert Subscribers: Retrospective Descriptive Study.

BACKGROUND: With the population aging, the number of people living with dementia is expected to rise, which, in turn, is expected to lead to an increase in the prevalence of missing incidents due to critical wandering. However, the estimated prevalence of missing incidents due to dementia is inconclusive in some jurisdictions and overlooked in others. OBJECTIVE: The aims of the study were to examine (1) the demographic, psychopathological, and environmental antecedents to missing incidents due to critical wandering among older adult MedicAlert Foundation Canada (hereinafter MedicAlert) subscribers; and (2) the characteristics and outcomes of the missing incidents. METHODS: This study used a retrospective descriptive design. The sample included 434 older adult MedicAlert subscribers involved in 560 missing incidents between January 2015 and July 2021. RESULTS: The sample was overrepresented by White older adults (329/425, 77.4%). MedicAlert subscribers reported missing were mostly female older adults (230/431, 53.4%), living in urban areas with at least 1 family member (277/433, 63.8%). Most of the MedicAlert subscribers (345/434, 79.5%) self-reported living with dementia. MedicAlert subscribers went missing most frequently from their private homes in the community (96/143, 67.1%), traveling on foot (248/270, 91.9%) and public transport (12/270, 4.4%), during the afternoon (262/560, 46.8%) and evening (174/560, 31.1%). Most were located by first responders (232/486, 47.7%) or Good Samaritans (224/486, 46.1%). Of the 560 missing incidents, 126 (22.5%) were repeated missing incidents. The mean time between missing incidents was 11 (SD 10.8) months. Finally, the majority of MedicAlert subscribers were returned home safely (453/500, 90.6%); and reports of harm, injuries (46/500, 9.2%), and death (1/500, 0.2%) were very low. CONCLUSIONS: This study provides the prevalence of missing incidents from 1 database source. The low frequency of missing incidents may not represent populations that are not White. Despite the low number of missing incidents, the 0.2% (1/500) of cases resulting in injuries or death are devastating experiences that may be mitigated through prevention strategies.

Population Dementia Incidence and Direct Oral Anticoagulant Use in a Representative Population With Atrial Fibrillation.

BACKGROUND AND OBJECTIVES: Incidence and prevalence of atrial fibrillation (AF), a risk factor of dementia, have been increasing over time. Oral anticoagulation reduces risk of stroke and other negative outcomes of AF and may reduce dementia health inequities. The objective of this study was to estimate dementia incidence in patients with newly-diagnosed AF and taking an anticoagulant as use of direct oral anticoagulants (DOACs) increased. METHODS: We used a retrospective cohort design with annual incident AF cohorts of community-dwelling Medicare Fee-for-Service beneficiaries, enrolled in Parts A, B, and D from 2007 to 2017. The sample was limited to beneficiaries aged 67 years and older with incident AF; no prior dementia; and use of anticoagulants warfarin, dabigatran, rivaroxaban, apixaban, or edoxaban in year t. RESULTS: A total of 1,083,338 beneficiaries were included in the study, 58.5% female, with mean (SD) age 77.2 (6.75) years. Among anticoagulated, incident AF cohorts, use of DOACs increased from 10.6% in their first year of availability (2011) to 41.4% in 2017. Among incident AF cohorts taking any oral anticoagulant, 3-year dementia incidence did not change significantly over the cohorts after adjusting for confounders. For example, incidence was 9.1% (95% CI 8.9-9.4) among White persons diagnosed with AF in 2007 and 2008 and 8.9% (95% CI 8.7-9.1) in 2017. Across cohorts, dementia incidence was consistently highest for Black persons, followed by American Indian/Alaska Native and White persons, and lowest for Asian persons. In 2017, 10.9% (95% CI 10.4-11.3) of Black persons in the cohort developed dementia within 3 years, 9.4% (95% CI 8.0-10.9) of American Indian/Alaska Native, 8.9% (95% CI 8.7-9.1) of White, 8.7% (95% CI 8.2-9.1) of Hispanic, and 6.9% (95% CI 6.4-7.4) of Asian persons. Across race/ethnicity, 3-year stroke risk decreased consistently over time; however, the increasing availability of DOACs did not alter the trend. DISCUSSION: Increased use of DOACs among incident AF cohorts from 2007 to 2017 was not associated with significant declines in dementia or stroke risk. Consideration of similar stroke and dementia risk, as well as differences in cost, is warranted when weighing the risks and benefits of available oral anticoagulants.

[Impairment of Attention in Dementia].

Impairment of attention, especially complex attention, appears in the early stage of dementia. Complex attention is one of the six neurocognitive domains, which are disturbed in dementia. Impairment of complex attention promotes symptoms of dementia, difficulties in activities of daily living (ADLs), and disturbed communication in dementia due to Alzheimer disease, Lewy body disease, and cerebrovascular diseases. Despite its importance, research on "impairment of attention in dementia" is scarce. We look forward to future studies addressing this topic. In this article, we emphasized on providing care for ADL and communication for people with dementia, who have attention deficits.

Movement and Pressure Injury Prevention Care for Nursing Home Residents: Addressing the Nescience.

OBJECTIVE: To compare movement associated with position changes among nursing home residents who remain in lying versus upright positions for more than 2 hours and among residents living with obesity, dementia, or neither condition. METHODS: The authors conducted a descriptive exploratory study using secondary data (N = 934) from the Turn Everyone And Move for Ulcer Prevention (TEAM-UP) clinical trial to examine transient movements (<60 seconds) within prolonged periods of 2 to 5 hours without repositioning. RESULTS: Nursing home residents exhibit significantly more episodic transient movements when upright than lying. Residents with obesity or dementia exhibited similar frequencies of episodic transient movements compared with residents with neither obesity nor dementia. Upright or lying movements were more frequent among residents with obesity than among those with neither obesity nor dementia selectively when prolonged events ranged from 2 to 4 hours. Pairwise comparisons of movement rates among resident subgroups (living with obesity, living with dementia, or neither group) across repositioning intervals showed episodic transient movements were significantly higher across all subgroups for repositioning intervals up to 3 hours when compared with repositioning intervals of greater than 3 hours. CONCLUSIONS: Findings challenge assumptions that nursing home residents are inactive and at risk for prolonged sitting. These preliminary findings, along with TEAM-UP findings where no pressure injuries occurred in up to 5 hours in prolonged positions, support establishing a standard 3-hour repositioning interval with use of high-density mattresses without a negative impact on pressure injury occurrence. There should be caution when considering repositioning intervals greater than 3 hours. Further research is indicated to explore protective effect of episodic transient movements of other subgroups.

Social Media Discourse Related to Caregiving for Older Adults Living With Alzheimer Disease and Related Dementias: Computational and Qualitative Study.

BACKGROUND: In the United States, caregivers of people living with Alzheimer disease and Alzheimer disease-related dementias (AD/ADRD) provide >16 billion hours of unpaid care annually. These caregivers experience high levels of stress and burden related to the challenges associated with providing care. Social media is an emerging space for individuals to seek various forms of support. OBJECTIVE: We aimed to explore the primary topics of conversation on the social media site Reddit related to AD/ADRD. We then aimed to explore these topics in depth, specifically examining elements of social support and behavioral symptomology discussed by users. METHODS: We first generated an unsupervised topic model from 6563 posts made to 2 dementia-specific subreddit forums (r/Alzheimers and r/dementia). Then, we conducted a manual qualitative content analysis of a random subset of these data to further explore salient themes in the corpus. RESULTS: The topic model with the highest overall coherence score (0.38) included 10 topics, including caregiver burden, anxiety, support-seeking, and AD/ADRD behavioral symptomology. Qualitative analyses provided added context, wherein users sought emotional and informational support for many aspects of the care experience, including assistance in making key care-related decisions. Users expressed challenging and complex emotions on Reddit, which may be taboo to express in person. CONCLUSIONS: Reddit users seek many different forms of support, including emotional and specific informational support, from others on the internet. Users expressed a variety of concerns, challenges, and behavioral symptoms to manage as part of the care experience. The unique (ie, anonymous and moderated) nature of the forum allowed for a safe space to express emotions free from documented caregiver stigma. Additional support structures are needed to assist caregivers of people living with AD/ADRD.

Perceptions and Utilization of Online Peer Support Among Informal Dementia Caregivers: Survey Study.

Background: Informal dementia caregivers are those who care for a person living with dementia and do not receive payment (eg, family members, friends, or other unpaid caregivers). These informal caregivers are subject to substantial mental, physical, and financial burdens. Online communities enable these caregivers to exchange caregiving strategies and communicate experiences with other caregivers whom they generally do not know in real life. Research has demonstrated the benefits of peer support in online communities, but this research is limited, focusing merely on caregivers who are already online community users. Objective: We aimed to investigate the perceptions and utilization of online peer support through a survey. Methods: Following the Andersen and Newman Framework of Health Services Utilization and using REDCap (Research Electronic Data Capture), we designed and administered a survey to investigate the perceptions and utilization of online peer support among informal dementia caregivers. Specifically, we collected types of information that influence whether an informal dementia caregiver accesses online peer support: predisposing factors, which refer to the sociocultural characteristics of caregivers, relationships between caregivers and people living with dementia, and belief in the value of online peer support; enabling factors, which refer to the logistic aspects of accessing online peer support (eg, eHealth literacy and access to high-speed internet); and need factors, which are the most immediate causes of seeking online peer support. We also collected data on caregivers' experiences with accessing online communities. We distributed the survey link on November 14, 2022, within two online locations: the Alzheimer's Association website (as an advertisement) and ALZConnected (an online community organized by the Alzheimer's Association). We collected all responses on February 23, 2023, and conducted a regression analysis to identifyn factors that were associated with accessing online peer support. Results: We collected responses from 172 dementia caregivers. Of these participants, 140 (81.4%) completed the entire survey. These caregivers were aged 19 to 87 (mean 54, SD 13.5) years, and a majority were female (123/140, 87.9%) and White (126/140, 90%). Our findings show that the behavior of accessing any online community was significantly associated with participants' belief in the value of online peer support (P=.006). Moreover, of the 40 non-online community caregivers, 33 (83%) had a belief score above 24-the score that was assigned when a neutral option was selected for each belief question. The most common reasons for not accessing any online community were having no time to do so (14/140, 10%) and having insufficient online information-searching skills (9/140, 6.4%). Conclusions: Our findings suggest that online peer support is valuable, but practical strategies are needed to assist informal dementia caregivers who have limited time or online information-searching skills.

Exploring the Regulatory Landscape of Dementia: Insights from Non-Coding RNAs.

Dementia, a multifaceted neurological syndrome characterized by cognitive decline, poses significant challenges to daily functioning. The main causes of dementia, including Alzheimer's disease (AD), frontotemporal dementia (FTD), Lewy body dementia (LBD), and vascular dementia (VD), have different symptoms and etiologies. Genetic regulators, specifically non-coding RNAs (ncRNAs) such as microRNAs (miRNAs), long non-coding RNAs (lncRNAs), and circular RNAs (circRNAs), are known to play important roles in dementia pathogenesis. MiRNAs, small non-coding RNAs, regulate gene expression by binding to the 3' untranslated regions of target messenger RNAs (mRNAs), while lncRNAs and circRNAs act as molecular sponges for miRNAs, thereby regulating gene expression. The emerging concept of competing endogenous RNA (ceRNA) interactions, involving lncRNAs and circRNAs as competitors for miRNA binding, has gained attention as potential biomarkers and therapeutic targets in dementia-related disorders. This review explores the regulatory roles of ncRNAs, particularly miRNAs, and the intricate dynamics of ceRNA interactions, providing insights into dementia pathogenesis and potential therapeutic avenues.

Affiliate Stigma among family caregivers of individuals with dementia in China: a cross-sectional study.

Background: Affiliate stigma experienced by family caregivers of individuals with dementia may seriously affect home care and prognosis of these patients. This study aimed to explore the levels of perceived affiliate stigma and its influencing factors among family caregivers of patients with dementia in mainland China, which remains a relatively unexplored topic. Methods: In this cross-sectional study, purposive sampling was used to recruit dementia family caregivers from an online communication group between April and May 2022. A total of 727 eligible caregivers were included and asked to complete the demographic questionnaire, the affiliate stigma scale, and the caregiver burden inventory. Descriptive statistics, independent sample t-test, one-way analysis of variance, Pearson correlation analysis, and multiple linear regression were used to explore the factors that influence perceived affiliate stigma among dementia family caregivers. Results: The mean score for affiliate stigma of dementia family caregivers was 48.09 ± 16.38 (range: 22-86). Whether there were regular breaks during patient care, time-dependent burden, developmental burden, physical burden, and social burden were significant factors influencing the affiliate stigma of dementia family caregivers. Conclusion: Dementia family caregivers showed a moderate to high level of affiliate stigma. Those who had regular breaks during patient care, higher time-dependent burden, developmental burden, and physical burden and lower social burden exhibited higher levels of affiliate stigma.

Understanding interaction in problematic dementia and social care encounters: Protocol for a micro-level study combining video-ethnography and Conversation Analysis (CA).

INTRODUCTION: It is well established that the actions and behaviour of dementia care workers are fundamental to the wellbeing of the people they care for. Not only do they deal with basic healthcare needs, but they also perform a vital psycho-social function by providing-through their regular presence-an underlying continuity for residents. This has been shown to improve well-being, particularly for those in the advanced stages of dementia. It has also been suggested that there are additional psycho-social benefits of such contact which can directly influence the need for anti-psychotic medication. However, unlike most other healthcare and medical settings, the specialised and often difficult interactions that dementia care workers handle every day have not yet been the subject of detailed micro-level analysis. This is particularly significant because much of the impact that care-workers have relates to the way in which they interact with the people they care for. Not having a clear understanding of how their interactions 'work' at the micro-level-particularly ones that are specific to dementia care settings, and that care workers report to be difficult or challenging-means that any training interventions that are developed may not resonate with their real-world experience, and ultimately run the risk of failing. This video-based observational study aims to provide a detailed micro-exploration of problematic and challenging interactions involving care-workers and people living with dementia. SETTING AND METHODS: The study is based in the UK and will involve up to 20 dementia care staff and 60 people living with dementia. Fieldwork will be conducted in 5 dementia care home and community-based dementia day care settings using naturalistic observational methods (primarily video-ethnography). Data will be analysed using Conversation Analysis (CA).

Technology-based group exercise interventions for people living with dementia or mild cognitive impairment: A scoping review.

Older people living with dementia or mild cognitive impairment (MCI) are more vulnerable to experiencing social isolation and loneliness due to their cognitive and physical impairments. Increasingly integrating technology into group exercises contributed to the improved resilience and well-being of older adults living with dementia and MCI. The purpose of this scoping review was to identify the various types, feasibility, outcome measures, and impacts of technology-based group exercise interventions for people with dementia or MCI. We utilized the Joanna Briggs Institute approach, a three-step process. A comprehensive literature search on five databases-CINAHL, MEDLINE, Embase, Web of Science, and PsycInfo-until January 2024 yielded 1,585 publications; the final review included 14 publications that recruited a total of 379 participants, with mean age of 69 (SD = 4.21) years to 87.07 (SD = 3.92) years. Analysis of data showed three types of technology-based group exercise interventions for people with dementia or MCI: (a) exergames, (b) virtual cycling or kayak paddling, and (c) video-conferencing platforms. In addition, we identified three key impacts: (a) feasibility and accessibility; (b) physical, psychosocial, and cognitive benefits; and (c) adaptations necessary for persons with dementia or MCI. Our study suggests that technology-based group exercise interventions are feasible and acceptable to persons with dementia or MCI. Future studies should involve individuals with dementia and their caregivers in the design and implementation of technology-based group exercise programs.

Job-related exhaustion risk variant in UST is associated with dementia and DNA methylation.

Previous genome-wide association and replication study for job-related exhaustion indicated a risk variant, rs13219957 in the UST gene. Epidemiological studies suggest connection of stress-related conditions and dementia risk. Therefore, we first studied association of rs13219957 and register-based incident dementia using survival models in the Finnish National FINRISK study surveys (N = 26,693). The AA genotype of rs13219957 was significantly associated with 40% increased risk of all-cause dementia. Then we analysed the UST locus association with brain pathology in the Vantaa 85+ cohort and found association with tau pathology (Braak stage) but not with amyloid pathology. Finally, in the functional analyses, rs13219957 showed a highly significant association with two DNA methylation sites of UST, and UST expression. Thus, the results suggest a common risk variant for a stress-related condition and dementia. Mechanisms to mediate the connection may include differential DNA methylation and transcriptional regulation of UST.

Acceptability of Using a Decision Aid to Support Family Carers of People With Dementia Towards the End of Life: A Qualitative Study.

OBJECTIVES: To explore the experiences, acceptability and utility of a decision aid for family carers of people with dementia towards the end of life. METHODS: We conducted semi-structured interviews with a sample of family carers enroled into a 6-month feasibility study in England, sampling to gain a range of experiences and views, based on relationship to person they cared for (e.g., spouse, adult child), age, gender, and self-reported use of the decision aid during the feasibility study. Interviews were conducted in March 2021-July 2021 and analysed using reflexive thematic analysis. We used COREQ checklist to report our methods and results. RESULTS: Family carers found the decision aid acceptable, describing it as comprehensive, accessible with relevant information and its presentation enabled good engagement. Experiences of the decision aid covered four main themes which demonstrated the perceived acceptability and utility: 1. A source of support and reassurance; 2. Empowering conversations and confidence; 3. Including the person living with dementia; and 4. Breaking down complexity. CONCLUSIONS: An aid focussing on decisions about dementia end of life care supported family carers break down complex and emotive decisions, not only with making decisions in the moment but also in future planning. PATIENT OR PUBLIC CONTRIBUTION: Our three Patient and Public Involvement (PPI) members (all former family carers) were crucial throughout the wider study. PPI supported development of the topic guides, supported trialling the topic guide and interview procedures and finally supported the development of themes as part of the analysis.

Does assistive technology contribute to safety among home-dwelling older adults?

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