BMC Geriatrics

BackgroundCaring for someone with moderate to advanced dementia within a domestic home setting can be burdensome and time-consuming. To ensure the effectiveness of care planning and delivery, especially towards the end of life, understanding the nature and impact of such caregiving on the family carer is important. Synthesising existing research will allow greater insight into this experience. Review question How do family carers describe their experience of providing home-based care for people with moderate to advanced dementia? DesignA narrative synthesis of qualitative research exploring the experiences of people with moderate to advanced dementia and their family carers was conducted. Databases (MEDLINE, CINAHL, EMBASE, PsychINFO, Web of Science and Academic Search Complete) were searched from 1984 to 2020. Similarities and differences between papers were grouped using textual narrative synthesis. FindingsThis paper reports findings from a PhD thesis (James, 2021). Included papers (n=17) incorporated those focused on caring for people with advanced dementia (n=8), and those with moderate dementia (n=9). Family carers reported an experience of loss, burden, and grief. Experiences of internal conflict also led to psychological distress. These experiences had a negative impact on the general health of the family carer. Improvement in the family carers inter-relationships and the feeling of being useful or having a sense of meaning were reported as positive aspects of caregiving. ConclusionA complete description of family carers experiences may be inadequate in conveying an acknowledgement of dementia as an illness within the domestic home. Their justifications and determinants for balancing family carers challenges and distress to morals also remain unclear. Further research is required to ascertain how family carers may proportionally balance their personified loss with their personified value earlier in the disease trajectory.

BackgroundDementia is a terminal condition often requiring palliative care delivered in residential care settings. While informal caregivers (ICGs) are pivotal in care-based decision-making, they have higher rates of physical and mental illness than ICGs of people with other terminal conditions. Identifying the needs of ICGs of people living with dementia (PLwD) is essential, to mitigate these risks and develop effective support systems. ObjectiveOur objective was to understand the first-hand experiences and needs of ICGs of PLwD receiving palliative and end-of-life care, in residential care settings. MethodFollowing the JBI methodology for scoping reviews, electronic databases (APA PsychNet, the Cochrane Database of Systematic Reviews, PubMed and Web of Science) were searched in September 2024, with no publication date limitations. Thematic synthesis was conducted on the findings of eligible peer-reviewed and grey literature, written in English, and reported in accordance with the PRISMA-ScR checklist. ResultsForty-six articles were included. There were three overarching themes: "knowledge and understanding of dementia", "engagement in care-based decisions", and "coping mechanisms and support for own wellbeing". Sub-themes presented an interplay between these, demonstrating the importance of understanding dementia, the significance of such knowledge for ICGs to maintain their own wellbeing, subsequently influencing their engagement in care-based decision making. ConclusionCare settings must work towards compassionate and timely support for ICGs, including a stable point of contact throughout admission and should use lay language. Future studies should take a longitudinal approach to understand the evolving role of ICGs, with particular attention to cultural and ethnic needs. What is already known on this topicO_LIAlongside care-staff, informal caregivers play a critical role in care-based decision-making and support for people living with dementia (PLwD), but they face significant health and wellbeing challenges, with limited research on effective mechanisms to involve and support them in their role. C_LI What this study addsO_LIOur study highlights the interconnected challenges faced by informal caregivers of PLwD in understanding dementia, maintaining their own wellbeing, and engaging in care-based decisions for PLwD. C_LI How this study might affect research, practice, or policyO_LIThe findings identify a need for proactive, compassionate support for informal caregivers of PLwD through navigable resources, education surrounding dementia terminology using lay-language, and consistent communication with care-staff to build trust and stability for informal caregivers. C_LIO_LIOur scoping review highlights the need for longitudinal research on evolving informal caregiving roles and calls for further research to explore and address the diverse needs of underserved communities, to inform culturally competent policies and practices. C_LI

Introduction. Latino families shoulder a disproportionate share of dementia care in the United States, yet encounter multilayered barriers that shape access, timeliness, and quality. This study explores the experiences of Latino care partners, focusing on how system-level, cultural, and linguistic factors shape dementia care. Methods. We conducted a qualitative study using semi-structured interviews with care partners of Latino individuals living with Alzheimer's disease and related dementias (ADRD). Interviews were conducted by phone or videoconference by a bilingual interviewer, and the interviews were recorded and transcribed verbatim. Data was analyzed using reflexive thematic analysis. Results. Twenty-three participants were recruited. Two meta-themes captured participants' experiences. (1) Mismatch Between the Healthcare System and the Lived Realities of Latino Families Affected by Dementia, which included three subthemes: a) Linguistic barriers that referred to the quality and dialect fit (over-literal jargon, unfamiliar regional vocabulary, poor adaptation to literacy); b) Cultural misfit, were dementia-care programs were not culturally or linguistically appropriate, or programs where cultural norms were disregarded; and c) Structural and systemic barriers, such as communication failures (e.g. voicemail loops, no responsiveness) and long waits/fragmented pathways that broke clinical momentum (e.g. months to a year for specialty appointment). The second theme was: The Central Role of the Latino Caregiver in Navigating Dementia Care, where, in the absence of pathway ownership, care partners served as navigators, interpreters, coordinators, and safety monitors, while also bearing the emotional and financial strain. Discussion: The narratives from care partners reveal specific mechanisms (e.g., caregiver hyper-advocacy and "maze-like" coordination failures) that, if addressed, can guide intervention design and policy aimed at redistributing coordination back to the system and improving outcomes for Latino families.

Dementia is a progressive degenerative disease, typically affecting older adults for which there is currently no cure. Dementia is characterised by progressive impairment to several cognitive functions including memory and orientation, practical abilities and mood changes, all of which can impact personality and social relationships. The theory of social death has been explored for people living with dementia as the ability to maintain social interactions are threatened leading to a loss of social identity and exclusion and withdrawal from the wider community. A relationship-centred care approach has been recommended to improve care for older people in long-term care, aiming to create environments conducive to relationships, considering the needs of the person living with dementia and also the staff and family members involved in their care. The Senses Framework by Nolan was designed to promote relationships, acknowledging the experiences of all parties across six senses: security, continuity, belonging, purpose, fulfilment and significance. Utilising the Senses Framework has the potential to sustain meaningful relationships by fostering a sense of value and empowerment. This Rapid Evidence Summary aims to explore the evidence assessing the benefits of a relationship triad approach (Senses Framework and other relationship-centred care approaches) in long term care settings (including care homes) for people living with dementia. Nine primary studies and one systematic review were identified. The benefits of using a relationship-centred approach were mapped under each of the senses described within the Senses Framework, detailed separately for people living with dementia, relatives and care home staff. For people living with dementia, interventions using touch and music increased the sense of security and belonging reducing neuropsychiatric conditions such as agitation and aggression. Memory boxes were used to support a sense of significance and continuity and significant moments from the past brought pleasure and enabled meaningful conversations. For relatives and staff, improved communication and relationships increased confidence and trust and by working together they found that they could exert more influence and could develop into a powerful force for change.

IntroductionIn Ireland, there has been a substantial recent investment in the Community Specialist Team for Older People (CST OP) service model. This approach provides timely integrated assessment and intervention for older adults in the community by a specialist multidisciplinary team. To inform the ongoing development and refinement of the CST OP service model, and ensure it is responsive to the needs and preferences of older adults, it is important to understand how older adults experience this new model of care. This qualitative descriptive study aims to resolve a research gap by exploring older adults experiences of the CST OP service model. MethodsA qualitative descriptive study design was employed to explore older adults experiences of the CST OP service model. Purposive non-probability sampling was used to recruit 13 older adults who had completed intervention with a CST OP intervention. All interviews were completed in participants own homes, audio recorded and transcribed verbatim. A reflexive approach to thematic analysis guided data analysis. FindingsThree themes were identified; older adults were uncertain about what to expect from the CST OP service and encountered accessibility barriers (theme1); the CST OP team provided coordinated, comprehensive care and built strong relationships with older adults (theme 2); CST OP intervention enabled older adults to better manage everyday activities and long-term conditions, thereby improving their wellbeing (theme 3). Discussion/ conclusionOur findings highlight the importance of CGA in community-based care for older adults. Further research is needed to address access barriers and evaluate older adults experiences with case management and care coordination in the CST OP service model.

ObjectivesOlder adults with communication disabilities (CDs) encounter challenges across various environments, with the most pronounced difficulties arising in healthcare settings. While CD is a common occurrence, limited research explores the medical and socioeconomic factors contributing to CD in the patient-centered setting. Therefore, our paper explores this interplay between communication experiences for older adults in healthcare contexts. MethodsWe combined and cleaned data (N=3725) from 2011 (Round 1) to 2022 (Round 12) taken from The National Health and Aging Trends Study (NHATS) and employed a binary logistic model and a weighted model to account for population adjustment to identify prevalent covariates influencing our hypothesis. ResultsIn a sample of 3725, health-related concerns (OR = 11.06, 95% CI: 7.81-15.65) significantly contributed to communication difficulties in the doctors office. Hearing loss (OR = 1.56, 95% CI: 1.05-1.10) and low education levels (below high school) (OR = 1.59, 95% CI: 1.23-2.06) were also associated with communication challenges. ConclusionThese findings indicate that significant health issues in adults may contribute to the development of communication disorders, underscoring the need for comprehensive support mechanisms. Future research should focus into supportive strategies and improved physician relationships is vital to support the needs to disabled patients.

Few dementia caregiver support programs have been tested in real-world settings. We tested the feasibility and preliminary effectiveness (e.g., preparedness for caregiving) of the first short message service (SMS) texting program to support informal caregivers of people with dementia. We analyzed data from 147 caregivers of people with dementia participating in a service program. This program was a remote, asynchronous, and bidirectional texting program focused on dementia education, skill-building, and community resources that lasted six months. We measured outcomes via surveys and metrics of intervention usage over six months. Two caregivers experienced technical issues during the program, 12.9% unsubscribed, and 68.8% read most texts thoroughly. Most caregivers (64.3-75.9%) reported high or very high levels of acceptability. Levels of preparedness for caregiving and unmet needs improved from pre- to post-program testing. This real-world implementation of a texting caregiver support program led to improvements in caregiver outcomes.

Latinos experience disproportionately poor outcomes in dementia and COVID-19, which may synergistically impact their health. We explored the impact of the COVID-19 pandemic among Latino families with dementia via a qualitative descriptive study of 21 informal caregivers of Latinos with dementia and 24 primary care providers. Two themes arose: The impact of a global pandemic (e.g., accelerated cognitive and physical decline, or caregivers choosing between risking finances and the familys infection given the work situation) and Developing resilience to the effects of the pandemic (e.g., caregivers seeking vaccination sites, moving in with the care recipient and adopting telehealth).

BackgroundThe Activity Theory of Aging suggests sustained activity aids older adults to maintain high quality of life. Caregiving resilience coaching like the Dreaming Together (DTog) program may have helped caregivers for people with Lewy body dementia (LBD) sustain supportive activity throughout challenges from caregiving and pandemics. ObjectivesTo determine experiences and attitudes on sustaining activities during the COVID-19 pandemic of LBD caregivers participating in caregiving resilience coaching two years into the pandemic. Methods13 participants (10 female; age=67.7 (9.9) years; Caregiver Quality of Life score=36 (12.9), "good"; Zarit Burden Interview score=72 (18.8), "mild to moderate") were recruited to participate in an Exit Interview held over Zoom right after DTog completion, between February and August of 2022. Participant responses were coded into themes through NVivo 12 software, for analysis relative to the Activity Theory of Aging. ResultsMain themes: 1) Technology: An imperfect solution to social isolation; 2) Self-care is a necessity even during a crisis; 3) Caregivers Report A Reinforcing Negative Cycle of Declining Care Recipient Health and Adaptability. ConclusionLBD caregivers, after completing the DTog resilience coaching program, maintained self-care activities that improved life satisfaction. Programs and studies promoting resilience-building activity should be considered to supporting LBD caregiving.

Background: Evidence regarding dementia prevention strategies has been accumulating. However, disseminating research findings to the public is often difficult, and addressing the evidence-practice gap presents an important challenge. This study examined potential strategies to support sustained engagement in dementia prevention activities. Participants and Setting: Members of senior citizens' clubs in Tottori Prefecture, Japan. Methods: This questionnaire survey collected data on basic demographics, frailty, and subjective cognitive decline (SCD). It also included questions on awareness of the Tottori Method Dementia Prevention Program, interest in experiencing the program if an instructor was dispatched, and the feasibility of engaging in the program through internet-based delivery or printed materials. Results: A total of 9,506 respondents were included in the analysis. Awareness of the dementia prevention program was 11.9%. Overall, 50.4% of the respondents registered a desire to try the program if an instructor was dispatched. The highest proportion of respondents (50.5%) reported willingness to engage in the program if materials summarizing activities that could be completed in approximately 10 min were provided. However, both frailty and SCD were associated with a lower interest in these dementia prevention activities (adjusted odd ratio [95% confidence interval] = 0.77 [0.67-0.89] and 0.86 [0.79-0.95], respectively). Conclusions: To promote sustained engagement in dementia prevention activities, opportunities to experience the program and activities that can be completed in a short time should be availed. However, disseminating research findings to the public remains challenging, and individuals at a higher risk of health problems may be less interested in dementia prevention. Proactive outreach strategies targeting high-risk individuals may be necessary to effectively disseminate the information.

BackgroundAlzheimers Disease and Related dementias (ADRD) are disproportionately underdiagnosed, misdiagnosed, and undertreated in Latino/a/e/x populations living in the U.S. Latino/a/e/x families also experience low access to ADRD caregiver support services and high levels of depression. Primary care providers (PCPs) are the first point of contact for patients and their families, and they are critical in understanding the factors associated with disparities in accessing services. This project aims to reflect on the barriers that Latino/a/e/x families experience in accessing and using healthcare services from the perspective of PCPs. MethodsThe data was collected through structured interviews with 23 diverse PCPs across the US via videoconference or phone calls. Participants were recruited via snowball sampling. Two reviewers used an inductive coding approach to conduct qualitative thematic analysis. The Rigorous and Accelerated Data Reduction (RADaR) technique was used to extract relevant data and organize it into relevant categories. ResultsSome of the themes identified reflect the experiences of individuals in the diagnostic process and subsequent care: 1) Family members are usually the first ones to notice the symptoms, 2) Delays in seeking care might be partially influenced by denial from individuals and their families, 3) Language congruency promotes the disclosure of symptoms, 4) Care that is linguistically and literacy appropriate requires additional support of patients and families, and 5) Caregiving expectations and preferences by Latino/a/e/x families do not shield caregivers from feeling burnout. Overall, PCPs reflected that the experiences of individuals are highly influenced by socioeconomic factors, which also influence their care plans. ConclusionMost Latino/a/e/x older adults with ADRD will be cared for by a PCP at some point during their disease, which means that they require additional support and resources at primary care appointments to address the barriers to accessing care services and enhance health equity in Latino/a/e/x communities.

BackgroundThe COVID-19 pandemic created novel challenges for staff working in the adult social care sector, however its impact on staff working relationships within facilities is unclear. The aim of this study is to explore the effect the pandemic had on staff working relationships. MethodSecondary analysis of data collected in semi-structured, qualitative interviews with LTCF staff. Twenty-four participants working in eight LTCFs in England were recruited to discuss their experiences of working in a LTCF during the COVID-19 pandemic. Thematic analysis was used to explore the impact of the pandemic on staff working relationships. ResultsSeven themes were identified, these were a) a shared commitment to providing care to residents, b) strengthening working relationships between staff members, c) adapting to novel and changing roles, d) working as an incentive for socialisation, e) leadership by example, f) recruitment and retraining of new staff, and g) divisions between furloughed and attending LTCF staff. DiscussionThe findings show that within the challenges that the pandemic created for LTCFs, staff members reported improved staff working relationships, characteristics by strengthened bonds between staff, improvements in team working and developing new approaches to resident care. However, furloughed and newly recruited staff members were, at times, excluded from these developments. Further research is needed to explore how improvements to staff working relationships can be replicated and sustained prior to future pandemics, and the supportive effect these may have on quality of care and staff mental health and wellbeing.

BackgroundDementia has no cure but interventions can stabilize the progression of cognitive, functional, and behavioral symptoms. Primary care providers (PCPs) are vital for the early detection, and long-term management of these diseases, given their gatekeeping role in the healthcare system. However, PCPs rarely implement evidence-based dementia care due to barriers such as limited dementia knowledge and time. Training PCPs and linking them to dementia care navigators may address these barriers. ObjectiveWe explored the preferences of PCPs about dementia care training programs and dementia care navigation services. MethodsWe conducted qualitative interviews with 24 PCPs recruited nationally via snowball sampling. We conducted all interviews via videocall and organized the transcripts for qualitative review to identify codes and themes, using a pragmatic approach, a qualitative description methodology, and thematic analysis methods. ResultsPCP preferences varied regarding the topic, duration, materials, modality, and incentives of the dementia training. With regards to dementia care navigation services, preferences varied with respect to whether they benefited the PCP or the patient, and which were the optimal qualities of a dementia care navigator. ConclusionsDementia training and care navigation services would benefit from embedding cultural proficiency within their content, materials, and navigation abilities. EMR-based decision-support tools would facilitate PCPs implementation of evidence-based dementia care.

ObjectivesFamily caregivers for people with dementia report daily fluctuations in stress levels. Much prior research on caregivers daily stress fluctuations has used a daily diary method. However, only a few studies have used this method with family caregivers to examine the effects of respite services. This study aimed to use a daily diary method to assess the effects of respite services on stress and depression in family caregivers. MethodsParticipants included 13 family caregivers of persons with dementia using respite services in rural areas of Japan. Participants completed self-administered questionnaires every day for seven days, including the use or non-use of respite services, cognitive and daily living function, depression, and stress appraisal. Generalized linear mixed models with data nested within persons were used for the analysis. ResultsFew significant effects of services were found on caregivers depression and stress appraisals at the between-person level. However, within-person level analyses using generalized mixed models showed that respite services significantly reduced stress appraisal. ConclusionThe findings demonstrate the stress-buffering effect of respite service for caregivers and the applicability of a daily diary method to the small sample.

BackgroundThe COVID-19 pandemic significantly increased the number of deaths within LTCFs globally. Restrictions around visitation and social distancing were common, however, research conducted during the pandemic demonstrates that these policies impacted the ways in which end of life care was delivered in LTCFs. AimThis paper aims to understand the experiences of LTCF staff in providing end of life care in the UK and explores the barriers and facilitators to doing so in the context of policies issued by the government at the time. MethodsData from semi-structured interviews conducted with 24 LTCF staff working across eight LTCFs in the north-west of England were analysed. Qualitative interviews were conducted with LTCF staff members, exploring their experiences of working in adult social care during the COVID-19 pandemic. Themes related to providing end of life care during this time were identified and analysed using thematic analysis. FindingsThematic analysis identified four key themes including: discrepancies in following COVID-19 UK government guidelines including visitation at end of life as an exception; the influence of staffing on delivering end of life care; utilising technology to substitute physical presence at end of life visits; and the emotional impact of delivering end of life care under COVID-19 restrictions. ConclusionsThe findings demonstrate the numerous challenges care staff experienced when delivering end of life care during the COVID-19 pandemic in terms of the practicalities of managing resident deaths, facilitating visitation and the associated impact on emotional wellbeing. Ensuring that all LTCF staff are trained to recognise end of life care, in the event of a future pandemic, will better equip LTCFs. In addition, it is paramount that the government provide consistent guidance on managing family contact at end of life, while taking into account the impact of implementing such guidance on the mental and emotional wellbeing of LTCF staff members.

BackgroundEarly recognition of dementia-related changes is critical for timely intervention. The AD8 Dementia Screening Interview (AD8) detects subtle cognitive and functional changes, yet its broader associations with health and wellbeing among Chinese-speaking older adults remain underexplored. MethodsA cross-sectional study was conducted with 144 community-dwelling Chinese older adults (mean age 73.1 years; 81.3% female). Participants completed sociodemographic, health, functional, and psychosocial measures, including the AD8 and the Geriatric Depression Scale (GDS-15). Exploratory Factor Analysis (EFA) assessed the dimensionality of the AD8, and binary logistic regression examined associations between AD8 items and demographic, health, functional, and psychosocial outcomes. ResultsChronic disease was prevalent (68.1 percent), and 13.2 percent reported a mental health disorder. EFA identified three domains: memory impairment, executive and interest decline, and functional recall difficulties, explaining 61.7 percent of the variance. Logistic regression showed predictive roles for judgment problems (AD8_1), repetition (AD8_3), financial difficulties (AD8_6), tool-use difficulties (AD8_4), and daily memory problems (AD8_8). Financial and executive difficulties were associated with age and mobility challenges, while repetition predicted psychological disorders and hopelessness. Judgment problems were linked to lower life satisfaction and happiness but greater helplessness. Worthlessness was predicted by financial, tool-use, and memory difficulties, whereas intact temporal recall (AD8_5) was protective. Several outcomes including boredom, low energy, and staying home were not significant. ConclusionDistinct AD8 items predicted vulnerabilities across physical, psychological, and social domains. Findings highlight the multidimensional value of the AD8 as a culturally relevant screening and risk stratification tool for community-based assessments of Chinese older adults. Summary Statement Implications for PracticeO_ST_ABSWhat does this research add to existing knowledge in gerontology?C_ST_ABSThis study shows that specific AD8 items identify early multidimensional vulnerability among community-dwelling Chinese-speaking older adults. Difficulties with judgment, repetition, financial management, tool use, and daily memory were associated with functional limitations and psychosocial distress, extending the AD8 beyond dementia screening alone. The identification of three AD8 domains supports a broader understanding of early cognitive change as involving cognitive, functional, and emotional processes. The findings contribute culturally specific evidence from an under-researched population in gerontological research. What are the implications of this new knowledge for nursing care with older people?For nursing practice, the AD8 provides a brief, feasible tool to support holistic assessment in community and aged care settings. Key AD8 indicators can guide nurses in identifying older people at risk of functional decline and emotional vulnerability, enabling earlier, person-centred interventions. The findings highlight the importance of culturally and linguistically appropriate assessment when caring for diverse ageing populations. How could the findings be used to influence policy or practice or research or education?The results support integrating brief cognitive screening into routine nursing assessments and community-based aged care services to promote early identification and ageing in place. Nursing education should emphasise interpreting cognitive screening within psychosocial and cultural contexts. Longitudinal research is needed to assess intervention effectiveness. Key Points[tpltrtarr] Early cognitive changes matter for older Chinese-speaking adults, because difficulties with judgment, repetition, financial management, and tool use (AD8 domains) were consistently linked to poorer functional and psychosocial outcomes. [tpltrtarr]Beyond dementia screening, the AD8 proved useful for detecting vulnerabilities in wellbeing and daily functioning, extending its role beyond diagnostic sensitivity. [tpltrtarr]A cultural focus is vital, as this study is among the first to examine AD8 associations in older Chinese-speaking adults, underscoring the need for culturally tailored screening. [tpltrtarr]The psychosocial impact of cognitive changes was evident, with strong associations to helplessness, worthlessness, and reduced life satisfaction, reinforcing the overlap between cognitive and emotional health. [tpltrtarr]In practice, integrating AD8 screening into community and primary care could help identify at-risk individuals early and support targeted interventions in culturally and linguistically diverse populations.

BackgroundEarly detection of dementia provides numerous benefits for those living with dementia and their relatives and healthcare systems at large. Methods available for early diagnosis have improved significantly over the past years. Therefore, we examined whether openness towards early diagnosis for dementia and preferred sources of support have changed in Germany over the last decade. MethodWe compared findings from two representative telephone surveys conducted among older adults in Germany ([≥] 60 years of age) in 2011 and 2022, assessing attitudes towards and willingness to pursue an early diagnosis of dementia in a sample of n = 879 individuals (mean age: 72.9, % female: 58.8). Group comparisons using Chi2- and t-tests and multivariable regression analyses were conducted, assessing factors linked to willingness to be examined for an early diagnosis of dementia. ResultsOpenness towards early diagnosis of dementia was high both in 2011 and 2022, but slightly declined over time (b=.62; 95% CI: .45; .86). Belief in preventability of dementia was linked to greater openness towards an early diagnosis of dementia (b=1.52; 95% CI: 1.12; 2.07). ConclusionWillingness to pursue an early diagnosis of dementia is high in the older German public, but slightly lower than reported previously. Improving knowledge on modifiable risk factors and better understanding of individual motives underlying endorsement or refusal of an early diagnosis may further increase acceptance in the general public.

IntroductionDementia is becoming increasingly prevalent in the UK. Older adults from black and south Asian communities have a higher risk for dementia due to an increased prevalence of dementia specific risk factors such as hypertension, diabetes, and heart disease. Deprivation has also been linked to an increased risk of dementia. Ethnic minority and lower socioeconomic groups are underrepresented in dementia research. The aim of this study was to explore factors influencing diversity in dementia and rehabilitation research within the context of the Promoting Activity, Independence, and Stability in Early Dementia (PrAISED) randomised controlled trial (RCT). MethodsWe conducted an exploratory sequential mixed methods study to explore disparities in socioeconomic and ethnic diversity between the PrAISED RCT population and recruitment pathways used in one study site (Nottinghamshire) and compared these with regional and national data. We aimed to collate and summarise data available on ethnicity and deprivation for recruitment/referral pathways (Nottinghamshire site) and the PrAISED cohort (all sites). Additionally, we interviewed healthcare professionals (n=2), researchers (n=2) and members of black and south Asian communities (n=4) to explore barriers to participating in research for people with dementia. ResultsUnder 2% of the overall PrAISED RCT sample (across all sites) were from a non-white ethnic minority background and a third of participants lived in areas with the least deprivation. Referrals to memory assessment services in Nottinghamshire included people from diverse socioeconomic backgrounds, with 7.3% being from non-white ethnic minority communities. Through interviews, several barriers to healthcare, research and rehabilitation were identified. Healthcare barriers included lack of awareness of dementia, mistrust, stigma, fear, and lack of culturally appropriate services. Research barriers included recruitment routes, awareness of research, language, and recruiter beliefs. Barriers to rehabilitation research included a lack of use of culturally appropriate language, more culturally specific barriers, and lack of representation. ConclusionParticipants recruited to the PrAISED RCT were mainly white and socioeconomically privileged. Data recording and access around ethnicity is still inconsistent, making it difficult to ascertain at which point services and research become inaccessible for people from underserved communities. Future research needs to work with these communities to develop innovative solutions to overcome the barriers identified in this study and to put recommendations made into practice.

Purpose of the StudyIn India, the rate of population aging, the greater burden of chronic disease-related care, and smaller families question the sustainability of traditional family based, home long term support and services (LTSS). However, little is still known about Indians perception of formal LTSS. Design and MethodsA mixed-methods design of family caregivers for older adults from Jodhpur, Rajasthan (n=30 in-depth interviews; n=100 quantitative survey). Inductive qualitative data analysis identified emergent themes about perceptions of either informal or formal LTSS. Caregivers self-reported which common LTSS they needed in a quantitative survey. Multivariable Poisson and logistic regression models were used to estimate the average total number of LTSS and probabilities of self reporting wanting individual LTSS, respectively. ResultsThe central theme was a negative perception of formal LTSS, especially the idea of paid helpers. A second theme served as the rationale for the first theme: caregivers reported a "duty" to provide care to ones family that "others" and those "doing it for money" could not meet. Caregivers reported on average 2.8 LTSS needs of 10 options. Formal LTSS, like home-health care assistance with instrumental activities of daily living, were least frequently reported; caregiver education and self-care activities were the most reported. ImplicationsDespite providing intensive amounts of informal LTSS and care for their family members, Indian caregivers consistently reported disinterest in using formal LTSS alternatives in qualitative and quantitative data. Caregivers reported a stronger desire for services that support their ability to carry out their caregiving roles.

BackgroundThere is a paucity of evidence relating to the implementation of interventions for dementia care. The Promoting Activity, Independence and Stability in Early Dementia (PrAISED) intervention is a 12-month, home-based, individually tailored rehabilitation programme, delivered by therapists and rehabilitation support workers, with a focus on strength, balance, physical activity and activities of daily living which has been tested in a randomised controlled trial (RCT). The aim of this study was to identify what is required to implement PrAISED, or similar interventions, in a real-world setting in routine practice. MethodsA 6-month version of PrAISED was delivered as a pilot service in one National Health Service organisation in England. Adaptations were made to intervention processes to facilitate the delivery of PrAISED as a service instead of as part of a research study. The number and duration of visits for each patient were recorded by intervention delivery staff and were summarised using descriptive statistics. Semi-structured interviews were conducted with seven members of staff delivering the PrAISED pilot service (two managers, five delivery staff) and eight members of staff from other sites involved in the PrAISED RCT (four managers, four delivery staff). The Consolidated Framework for Implementation Research was used to inform interview guides and conduct a codebook thematic analysis. ResultsBetween April and November 2022, 11 patients were referred to, and participated in, the service. Patients received on average 20.9 visits (mean duration 82.1 mins). Five themes were identified from interviews relating to the pilot service: operational processes; workforce capacity; referral; intervention delivery and patient impact. A further six themes were identified regarding the wider implementation of dementia therapy programmes: the need for support post-dementia diagnosis; acceptability; effective delivery; reach/referral; intervention design and adaptability; and intervention materials and training. ConclusionsInterventions like PrAISED are needed to fill a gap in support immediately post-dementia diagnosis. Future implementation in practice will require attention to the identification of intervention funding; leadership and management; time to establish operational processes; therapists with appropriate skills and experience; providing training and resources to support intervention delivery; defining patient eligibility, refining referral processes; and maintaining fidelity of the intervention.