BMC Geriatrics

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.

BackgroundChronic pain is common among older adults with frailty and its management often remains suboptimal, despite evidence for the benefits of biopsychosocial treatment approaches being found for other populations. The Pain in Older People with Frailty Study (POPPY) was a four-phase study that aimed to develop a service model for pain management for this population to enable them to better manage their pain and reduce its impact on their lives. The aim of Phase 3 of the POPPY study was to understand the views of those delivering and commissioning services relating to older adults engagement in services and how pain services could be maximised to meet their needs. MethodsWe used in-depth semi-structured interviews with healthcare professionals (HCPs) and commissioners to explore: 1) perceptions of opportunities and barriers to including and managing older adults in pain services within different contexts, and 2) how to maximise support for this population in community, primary care, secondary care, and tertiary pain services. A thematic approach was used to analyse the data. FindingsWe recruited participants from 9 pain and 2 generic community services in the north, southeast and west of England. Services were in community, primary care, secondary care, and tertiary settings. We interviewed 42 HCPs including clinicians, psychologists, allied health professionals, nurses, social prescribers, service managers, and health/wellbeing coaches. We also interviewed 2 service commissioners. Most participants recognised that older adults living with frailty and pain often shared characteristics relating to their physical health, life experience and social circumstances which shaped their engagement in pain services. Generally, participants perceived there to be reduced engagement in pain services among older adults with frailty. Factors that were likely to improve the management of pain in the older population both within pain and non-pain services were also identified. ConclusionsFor pain services to meet the needs of older adults with frailty, it is essential for them to be responsive to the specific needs of this population, adapting both the content and delivery of interventions accordingly. Trial registrationresearch registry7169/ IRAS project ID: 310174

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.

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.

BackgroundAdvance care planning (ACP) and advance directives (AD) are tools for supporting person-centered decision-making. In dementia care, the progression of cognitive decline, complex family dynamics and variability in healthcare systems pose unique challenges to effective ACP/AD implementation for people with dementia (PWD). MethodsWe conducted a scoping review of the literature related to ACP/AD in dementia care between 2014-2024. Studies were screened and thematically analyzed to identify current approaches, gaps and recommendations for dementia-specific ACP/AD. We identified key stakeholders involved in decision-making and highlighted procedural components for ACP/AD according to stakeholder groups. ResultsForty studies were included. Key stakeholders included healthcare professionals (HCPs); family members and caregivers; PWD; dyads (PWD and their caregivers); the broader public; policymakers; and researchers. Prominent findings included: the role and training of HCPs; educational and decision-support needs; early and ongoing engagement of PWD; development and evaluation of dementia-specific tools; ethical and procedural challenges in end-of-life decision-making; and the importance of outreach and cultural sensitivity. Promising interventions include structured communication models, psychoeducational programs and tools, although few have been fully adapted for dementia. ConclusionDementia-specific ACP/AD require a relational, flexible and ethically grounded approach that evolves with the individuals condition. While ACP/AD should reflect the autonomous preferences of the PWD, during late-stage dementia, shared decision-making becomes central to providing care that aligns with the persons goals and preferences. Future research should focus on inclusive tools and training; timing and process facilitation; and public health strategies to improve access and equity.

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.

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.

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

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.

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.

Background: Heart failure (HF) is a prevalent and often debilitating cardiovascular condition among older adults, frequently accompanied by multimorbidity, functional limitations, and the need to age in place. Traditional models of successful aging emphasize disease absence and preserved function, yet most individuals with HF live with ongoing symptoms and chronic health challenges. How older adults with HF define aging well, particularly across different socioeconomic contexts, remains underexplored. Objectives: To explore how older adults with HF conceptualize aging well and to identify perceived facilitators and barriers across more and less resourced New York City neighborhoods. Methods: We conducted semi-structured interviews with 20 adults diagnosed with HF residing in Manhattan and Brooklyn neighborhoods classified by 2019 United States Census data. Interviews were guided by Rowe and Kahn's model. Transcripts were analyzed using an inductive-deductive thematic approach and interpreted in alignment with the Healthy People 2030 framework. Results: Participants had a mean age of 69 years; 50% identified as Black and 50% were women. Despite functional limitations, 65% reported aging well. Five themes emerged: maintaining physical function, maintaining cognitive function, sustaining social relationships, avoiding pain, and promoting overall well-being. Avoiding pain and promoting well-being extended beyond traditional models. Neighborhood context shaped priorities, with financial stability emphasized in more affluent areas and social cohesion prioritized in less affluent communities. Conclusions: Older adults with HF frequently perceive themselves as aging well despite chronic illness, reframing successful aging beyond disease avoidance. These findings support a patient-centered, place-informed model of aging well with implications for healthcare delivery and policy.

BackgroundSundowning syndrome, characterized by increased confusion, agitation, and behavioral disturbances during late afternoon and evening hours, affects up to 66% of individuals with dementia. This phenomenon significantly impacts caregivers who must manage these challenging behaviors while experiencing physical and emotional exhaustion. Despite its prevalence, caregiver perspectives on managing sundowning remain poorly synthesized in the literature. ObjectiveTo systematically identify, appraise, and synthesize qualitative evidence on caregiver experiences and perceptions of managing sundowning behavior in individuals with dementia across diverse care settings. MethodsThis qualitative evidence synthesis will follow the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guidelines and Joanna Briggs Institute methodology for qualitative systematic reviews. Comprehensive searches will be conducted in MEDLINE, CINAHL, PsycINFO, EMBASE, Scopus, and Web of Science from inception to December 2025. Two reviewers will independently screen studies using Covidence software, extract data, and assess quality using the Critical Appraisal Skills Programme (CASP) qualitative checklist. Data synthesis will employ meta-aggregation and thematic synthesis approaches. Data SynthesisThe synthesis will use Noblit and Hares meta-ethnographic approach combined with Thomas and Hardens thematic synthesis. Line-by-line coding will identify descriptive themes, which will be developed into analytical themes. The Confidence in the Evidence from Reviews of Qualitative research (GRADE-CERQual) approach will assess confidence in review findings.

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.

BackgroundThe Canadian public has repeatedly expressed its desire for advance requests for Medical Assistance in Dying (MAiD) after dementia diagnosis, yet MAiD practitioners willingness to accede to such advance requests is unknown. This study explores the extent and nature of any gap between the publics desire for, and practitioners willingness to provide MAiD, and identifies policies to ameliorate such a gap. MethodsTwo complementary mixed-method surveys gathered data from convenience samples of 83 Canadian adults and 103 MAiD practitioners. The public survey asked participants which of five specific circumstances commonly encountered in dementia they would include in their advance requests. The practitioner survey queried the validation level participants would require before providing MAiD in each specific circumstance. Participants reasons were probed using thematic analysis of open-ended questions. ResultsOn average, 77% of public participants indicated they definitely or probably would include each of the five specific circumstances in their advance requests for MAiD. As validation level decreased from patient consent to patient assent, family assent, or advance request alone, the magnitude of the gap between the publics desire and practitioners willingness increased. The practitioners qualitative data contained many practical insights from which emerged seven policy recommendations to ameliorate this gap and increase the likelihood of honouring patient requests. InterpretationThe study provides evidence of a gap between public desire for, and practitioner willingness to provide MAiD in dementia. The policy recommendations are relevant to consideration of legislation for advance requests for MAiD.

Physician-Assisted Suicide (PAS) is considered by some patients who learn they are at risk for a cognitive decline owing to Alzheimers Disease. At the same time, the prospect of PAS may raise patients fear of imminent death. Can PAS be offered in a way that is preference-sensitive on one hand, and mitigates patients fear of imminent death on the other? A thought experiment of a Probabilistic Approach to PAS (Probabilistic PAS) is proposed here as a possible solution in jurisdictions where PAS is legal. Consider the following scenario: A patient diagnosed with Alzheimers Disease who is considering PAS might request that when he or she can no longer recognize their loved ones, their doctor will give them a lethal pill that has a 1/100 daily probability of being activated. As a result, after taking the pill, every day the patient will have a 1/100 probability of dying. The likelihood of the patient dying within a year from taking the pill is 97.4%, and within two years, it is 99.9%. As such, a Probabilistic PAS with which on any given day the probability of dying is low, can help patients avoid the fear of imminent death - which traditional PAS entails - while respecting their preference to end their lives. To examine the potential reception of a Probabilistic PAS, a survey was administered to a nationally-representative sample of US residents, using Prolific, a research participant recruitment platform. 499 participants were presented with a short description of a patient who was diagnosed with Alzheimers Disease, is writing an advance directive and is considering ways to end their life painlessly when they can no longer recognize their loved ones. Participants were asked about their own preferences in case they were to face a similar situation, and whether helping administer Probabilistic PAS would be ethical for the patients provider. 498 participants responded to the question about their own preference. 73.5% indicated that they would choose one of the two PAS options. Among those, 9.8% preferred a Probabilistic PAS over traditional PAS. Men were more likely than women to favor Probabilistic PAS for themselves. 482 participants indicated which option would be most ethical for the patients provider to administer. 48.1% indicated one of the two PAS options as most ethical. Among those, 10.3% considered Probabilistic PAS to be more ethical than traditional PAS. Men were more likely than women to consider the provider administering Probabilistic PAS to be most ethical. A version of the Probabilistic PAS proposed here should be considered as a preference-sensitive option presented by healthcare providers to patients considering advance care planning in places where PAS is available.

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).

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.

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.

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.

Background: Polypharmacy is common in people living with dementia (PLwD) and associated with adverse outcomes. Although Structured Medication Reviews (SMRs) are recommended to optimise medication regimens, their delivery is often constrained by limited healthcare resources. Artificial intelligence (AI) may support SMRs, yet little is known about how it is perceived by PLwD and their carers. This study explored their experiences of polypharmacy, views on SMRs, and attitudes towards use of AI tools in SMRs. Methods: Semi-structured interviews with 12 PLwD experiencing polypharmacy and two focus groups with 14 carers were conducted via Microsoft Teams or telephone and analysed using Reflexive Thematic Analysis. Results: Two themes were constructed: experiences of SMRs, and attitudes towards AI in SMRs. Participants described challenges in managing polypharmacy, with carers often playing a central role in supporting adherence and monitoring side effects. Experiences of SMRs varied widely. SMRs were most valued when clinicians were empathetic and able to offer personalised guidance. Participants viewed AI use in SMRs positively, provided that such tools were well validated and used to assist rather than replace healthcare professionals. AI was viewed as having the potential to reduce administrative burden and support more person-centred care. However, some had concerns regarding patient safety and data security, highlighting the need for appropriate regulation and human oversight. Conclusion: Participants were supportive of AI use in SMRs, despite concerns about safety, data security and disclosure of AI use, and emphasised the importance of patient-clinician interactions and lived experience involvement in AI tool development.