Dementia Care Research Articles

Prescription of Nonpharmacologic Interventions in Memory Clinics: Data from the Clinical Pathway for Alzheimer's Disease in China (CPAD) Study

ObjectivesNonpharmacologic interventions are recommended to improve outcomes in dementia. Little is known about their prescription in practice, especially in non-Western populations. We investigated individual- and institution-level characteristics associated with nonpharmacologic interventions prescription in China. DesignA multicenter observational study. Setting and ParticipantsThis study used cross-sectional data from 889 community-dwelling outpatients living with dementia aged ≥45 years from a multicenter registry of 28 memory clinics in China. MethodsPrescription records of nonpharmacologic interventions, carer and clinic characteristics, and reasons for declining interventions were collected. Multilevel logistic regression was used to identify factors associated with the prescription. ResultsNonpharmacologic interventions were prescribed in 323 people (36.3%) with mild cognitive impairment or dementia. Cognitive activities and carer training/support were the most prescribed interventions. Multilevel logistic regression showed that 73% of the variance in prescription was attributed to institutional characteristics of the memory clinic. Greater caregiving gain [odds ratio (OR), 1.05; 95% CI, 1.02-1.09], lower burden (OR, 0.97; 95% CI, 0.95-1.00), worse carer-perceived dyad relationship (OR, 0.83; 95% CI, 0.70-0.99), and family history of dementia (OR, 2.08; 95% CI, 1.19-3.65) were individual-level factors associated with prescription. Among 440 people considered having a need but received no prescription, declined by user/carer was the main reason for not prescribing (70.7%). Skepticism about effectiveness by physicians/carers and carers being unable or lacking resources to use the interventions were the common reasons given. Conclusions and ImplicationsA relatively low prescription rate of nonpharmacologic interventions is related to both individual- and institution-level factors. Carer support and education, instrumental support, and prescription guidelines across specialties and sites are possible strategies to improve access to nonpharmacologic interventions in dementia care.

Measuring clinically relevant change in apathy symptoms in ADMET and ADMET 2.

Among participants with Alzheimer's disease (AD) we estimated the minimal clinically important difference (MCID) in apathy symptom severity on three scales. Retrospective anchor- and distribution-based analyses of change in apathy symptom scores. Apathy in Dementia Methylphenidate Trial (ADMET) and ADMET 2 randomized controlled trials conducted at three and ten clinics specialized in dementia care in United States and Canada, respectively. Two hundred and sixty participants (60 ADMET, 200 ADMET 2) with clinically significant apathy in Alzheimer's disease. The Clinical Global Impression of Change in Apathy scale was used as the anchor measure and the MCID on the Neuropsychiatric Inventory - Apathy (NPI-A), Dementia Apathy Interview and Rating (DAIR), and Apathy Evaluation Scale-Informant (AES-I) were estimated with linear mixed models across all study visits. The estimated thresholds were evaluated with performance metrics. Among the MCID was a decrease of four points (95% CI: -4.0 to -4.8) on the NPI-A, 0.56 points (95% CI: -0.47 to -0.65) on the DAIR, and three points on the AES-I (95% CI: -0.9 to -5.4). Distribution-based analyses were largely consistent with the anchor-based analyses. The MCID across the three measures showed ∼60% accuracy. Sensitivity analyses found that MMSE scores and apathy severity at baseline influenced the estimated MCID. MCIDs for apathy on three scales will help evaluate treatment efficacy at the individual level. However, the modest correspondence between MCID and clinical impression of change suggests the need to consider other scales.

Prescribing Trends and Associated Outcomes of Antiepileptic Drugs and Other Psychotropic Medications in US Nursing Homes: Proposal for a Mixed Methods Investigation.

Pilot data suggest that off-label, unmonitored antiepileptic drug prescribing for behavioral and psychological symptoms of dementia is increasing, replacing other psychotropic medications targeted by purposeful reduction efforts. This trend accelerated during the COVID-19 pandemic. Although adverse outcomes related to this trend remain unknown, preliminary results hint that harms may be increasing and concentrated in vulnerable populations. Using a mixed methods approach including both a retrospective secondary data analysis and a national clinician survey, this study aims to describe appropriate and potentially inappropriate antiepileptic and other psychoactive drug prescribing in US nursing homes (NHs), characteristics and patient-oriented outcomes associated with this prescribing, and how these phenomena may be changing under the combined stressors of the COVID-19 pandemic and the pressure of reduction initiatives. To accomplish the objective, resident-level, mixed-effects regression models and interrupted time-series analyses will draw on cohort elements linked at an individual level from the Centers for Medicare and Medicaid Services' (CMS) Minimum Data Set, Medicare Part D, Medicare Provider Analysis and Review, and Outpatient and Public Use Files. Quarterly cohorts of NH residents (2009-2021) will incorporate individual-level data, including demographics; health status; disease variables; psychotropic medication claims; comprehensive NH health outcomes; hospital and emergency department adverse events; and NH details, including staffing resources and COVID-19 statistics. To help explain and validate findings, we will conduct a national qualitative survey of NH prescribers regarding their knowledge and beliefs surrounding changing approaches to dementia care and associated outcomes. Funding was obtained in September 2022. Institutional review board exemption approval was obtained in January 2023. The CMS Data Use Agreement was submitted in May 2023 and signed in March 2024. Data access was obtained in June 2024. Cohort creation is anticipated by January 2025, with crosswalks finalized by July 2025. The first survey was fielded in October 2023 and published in July 2024. The second survey was fielded in March 2024. The results are in review as of July 2024. Iterative survey cycles will continue biannually until December 2026. Multidisciplinary dissemination of survey analysis results began in July 2023, and dissemination of secondary data findings is anticipated to begin January 2025. These processes are ongoing, with investigation to wrap up by June 2027. This study will detail appropriate and inappropriate antiepileptic drug use and related outcomes in NHs and describe disparities in long-stay subpopulations treated or not treated with psychotropics. It will delineate the impact of the pandemic in combination with national policies on dementia management and outcomes. We believe this mixed methods approach, including processes that link multiple CMS data sets at an individual level and survey-relevant stakeholders, can be replicated and applied to evaluate a variety of patient-oriented questions in diverse clinical populations. DERR1-10.2196/64446.

Safer dementia care spaces: Perspectives from LGBTQ+ people with cognitive impairment and caregivers.

The number of caregivers and people living with dementia and other related forms of cognitive impairment is increasing worldwide. Compared to heterosexual and cisgender individuals, studies suggest that lesbian, gay, bisexual, queer, or other sexual and/or gender minority people (LGBTQ+) are at a higher risk for known risk factors for cognitive impairment and dementia, stemming from minority stress experiences. Limited research has explored the distinct obstacles that LGBTQ+ people with cognitive impairment and caregivers encounter, especially within dementia care. The purpose of this study was to deepen our understanding regarding LGBTQ+ people with cognitive impairment and caregivers' experiences with dementia care spaces, and to identify the strategies that they perceive as effective in creating safer and more inclusive spaces. Fourteen LGBTQ+ participants aged 27-78 (M = 58.07), consisting of two individuals with cognitive impairment and 12 caregivers, were interviewed about the care needs of LGBTQ+ people with cognitive impairment and caregivers, and their experiences with dementia care spaces. Using reflexive thematic analysis, we identified three overarching themes from the data, indicating that LGBTQ+ people with cognitive impairment and caregivers feel left "on the margins" of dementia care and express a desire for their identities to be celebrated and recognized. Additionally, they proposed recommendations for policy change to foster safer and more inclusive spaces for dementia care. The findings call attention to the negative experiences of LGBTQ+ people with cognitive impairment and caregivers with dementia care, but also highlight the ways in which care practices can be transformed to effectively address their care needs.

Public Libraries May Facilitate More Inclusive Programming with the Collaboration of Trained Partners for Patrons with Dementia

A Review of: Dai, J., Bartlett, J. C., & Moffatt, K. (2023). Library services enriching community engagement for dementia care: The Tales & Travels Program at a Canadian Public Library as a case study. Journal of Librarianship and Information Science, 55(1), 123–136. https://doi.org/10.1177/09610006211065170 Objective – To explore the potential of public libraries to contribute to community-based dementia care, and to examine the lived experiences of users partaking in the program. Design – Case study. Setting – A public library in Montreal, Canada. Subjects – Public library patrons with dementia and their caregivers engaging in Tales & Travels, a program for participants with early- and middle-stage dementia who learn about a new country through multi-sensory experiences. Methods – Semi-structured dyadic interviews with eleven people with dementia and their caregivers, as well as interviews with four program facilitators. Researchers implemented unobtrusive participant observation and thematically analyzed results. Main Results – Researchers discovered two primary themes via thematic analysis of interview transcripts: “community platform” and “librarians’ roles” came out of the data most often when discussing the program. Participants and caregivers felt a sense of familiarity and normalcy in a public library and appreciated the de-emphasis on dementia as the focus of the programming. Librarians felt the partnership with the Alzheimer Society allowed them to push past their uncertainties in their capacity to provide quality programming for this user group and found that collaborative relationship integral to the program’s success. Conclusion – With an intentional setting, collaborative partners with expertise in this user group, and person-centered programming, libraries can be a welcoming location to offer engaging and inclusive programs for patrons with dementia. However, these elements are of a high priority given the vulnerability of the population, and librarians who are willing to be trained in inclusivity, safety, and hospitality should handle programming. Replication of this study in other libraries would strengthen the conclusion of the case study.

"You just can't do that in dementia care": Barriers to partnership working within dementia services for people from south Asian communities.

Background: People from South Asian communities are under-represented at all levels of dementia services. Consequently, there is pressure for the statutory sector to deliver services in partnership with Voluntary, Community, Faith and Social Enterprises (VCFSEs). This study set out to explore the constraints to effective partnership working which prevent dementia care from being delivered in an equitable way.Methods: Data collection consisted of two phases. First, we interviewed seven people with experience of partnership working and developed three fictional vignettes that were representative of the challenges they faced. We then used these vignettes to stimulate discussion in focus groups and interviews with 13 VCFSE and 16 statutory sector participants. Data was analysed using deductive thematic analysis.Findings: Three themes were developed during the analysis. First, White British-centric services focused on the challenges for statutory services in meeting the needs of South Asians, developing flexible, responsive services and making inclusive partnership working truly meaningful. Second, VCFSE participants (but not statutory service participants) associated a failure to deliver effective partnership working with unconscious bias operating within systems, leading to the devaluing of their expertise and to their views being ignored. Finally, participants emphasised the need to prioritise relationships if they were to meet the challenges of developing partnership working.Conclusion: We identified three constraints acting to prevent effective partnership working. First, the different meanings that statutory and VCFSE participants attach to challenges threatens their ability to develop a shared understanding of the needs of communities. Second, a reluctance to explicitly address service deficiencies can mean that stereotypes remain unaddressed. Finally, while both parties lacked power to change the fundamentals of service delivery, power and resources were also unbalanced with VCSFE services being more reliant on the statutory sector.

P-tau217 and other blood biomarkers of dementia: variation with time of day

Plasma biomarkers of dementia, including phosphorylated tau (p-tau217), offer promise as tools for diagnosis, stratification for clinical trials, monitoring disease progression, and assessing the success of interventions in those living with Alzheimer’s disease. However, currently, it is unknown whether these dementia biomarker levels vary with the time of day, which could have implications for their clinical value. In two protocols, we studied 38 participants (70.8 ± 7.6 years; mean ± SD) in a 27-h laboratory protocol with either two samples taken 12 h apart or 3-hourly blood sampling for 24 h in the presence of a sleep–wake cycle. The study population comprised people living with mild Alzheimer’s disease (PLWA, n = 8), partners/caregivers of PLWA (n = 6) and cognitively intact older adults (n = 24). Single-molecule array technology was used to measure phosphorylated tau (p-tau217) (ALZpath), amyloid-beta 40 (Aβ40), amyloid-beta 42 (Aβ42), glial fibrillary acidic protein, and neurofilament light (NfL) (Neuro 4-Plex E). Analysis with a linear mixed model (SAS, PROC MIXED) revealed a significant effect of time of day for p-tau217, Aβ40, Aβ42, and NfL, and a significant effect of participant group for p-tau217. For p-tau217, the lowest levels were observed in the morning upon waking and the highest values in the afternoon/early evening. The magnitude of the diurnal variation for p-tau217 was similar to the reported increase in p-tau217 over one year in amyloid-β-positive mild cognitively impaired people. Currently, the factors driving this diurnal variation are unknown and could be related to sleep, circadian mechanisms, activity, posture, or meals. Overall, this work implies that the time of day of sample collection may be relevant in the implementation and interpretation of plasma biomarkers in dementia research and care.

Dementia mindset of caregivers providing residential care for older persons: study protocol for a replication study on the validation of the Dementia Mindset Scale

IntroductionProfessional caregivers’ perspectives on dementia and on people living with dementia (PlwD) can influence their feelings, judgements and behaviours in work situations, for example, how they think about symptoms, disease...

Physical Activity Mobile App (CareFit) for Informal Carers of People With Dementia: Protocol for a Feasibility and Adaptation Study.

Physical activity is a critical component of both well-being and preventative health, reducing the risk of both chronic mental and physical conditions and early death. Yet, there are numerous groups in society who are not able to undertake as much physical activity as they would like to. This includes informal (unpaid) carers, with the United Kingdom national survey data suggesting that 81% would like to do more physical activity on a regular basis. There is a clear need to develop innovations, including digital interventions that hold implementation potential to support regular physical activity in groups such as carers. This study aims to expand and personalize a cross-platform digital health app designed to support regular physical activity in carers of people with dementia for a period of 8 weeks and evaluate the potential for implementation. The CareFit for dementia carers study was a mixed methods co-design, development, and evaluation of a novel motivational smartphone app to support home-based regular physical activity for unpaid dementia carers. The study was planned to take place across 16 months in total (September 1, 2022, to December 31, 2023). The first phase included iterative design sprints to redesign an initial prototype for widespread use, supported through a bespoke content management system. The second phase included the release of the "CareFit" app across Scotland through invitations on the Apple and Google stores where we aimed to recruit 50 carers and up to 20 professionals to support the delivery in total. Partnerships for the work included a range of stakeholders across charities, health and social care partnerships, physical activity groups, and carers' organizations. We explored the implementation of CareFit, guided by both Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) and the Complex Intervention Frameworks. Project processes and outcomes were evaluated using mixed methods. The barriers and enablers for professional staff to signpost and use CareFit with clients were assessed through interviews or focus groups and round stakeholder meetings. The usability of CareFit was explored through qualitative interviews with carers and a system usability scale. We examined how CareFit could add value to carers by examining "in-app" data, pre-post questionnaire responses, and qualitative work, including interviews and focus groups. We also explored how CareFit could add value to the landscape of other online resources for dementia carers. Results from this study will contribute new knowledge including identifying (1) suitable pathways to identify and support carers through digital innovations; (2) future design of definitive studies in carer populations; and (3) an improved understanding of the Reach, Effectiveness, Adoption, Implementation, and Maintenance across a range of key stakeholders. DERR1-10.2196/53727.

A Patient and Public Engagement Project to Inform Dementia Care in a UK Hospital Trust.

The increasing prevalence of dementia in the United Kingdom presents significant challenges for healthcare, with projections estimating over a million affected individuals by 2025, costing the NHS £6.3 billion annually. Hospital admissions among dementia patients are common, occupying about 25% of UK hospital beds and leading to prolonged stays and diminished health outcomes. This paper presents the opening stages, part of a larger project where Patient and Public Involvement and Engagement (PPIE) was employed to understand and navigate what it means for hospital care for a person living with dementia. To understand hospital care for dementia patients, focus groups were conducted through dementia cafés in Essex and Suffolk from February to July 2023 engaging patients, carers and family members. Recognised processes for reporting PPIE and thematic analysis were used and identified six themes and 21 subthemes regarding hospital care: individualised care, role of carers, basic care, interpersonal communication, information sharing and staffing. The results from the PPIE will be used to inform and work with stakeholders through the next phases of the project, which involves examining care processes in the hospital, identifying touchpoints and evaluating these areas. The project continues to be informed by stakeholders including people living with dementia, carers and staff. Additionally, the results may inform other service providers for care enhancements, processes and delivery. Moving forward, the study emphasises the importance of building collaborative relationships with stakeholders involved in dementia care. Additionally, it provides insights to focus areas that are fundamental for acute care organisations when delivering care to people living with dementia. By incorporating insights from PPIE, this project seeks to identify inequalities in dementia care services, improve hospital care for people living with dementia, fostering a more inclusive and supportive healthcare environment. The purpose of the study was to explore the most important issues around hospital care for people with dementia, their carers and families. Persons living with dementia, carers and family members were involved in the study through community dementia cafés and recruited to take part in focus groups to discuss hospital care for patients with dementia. The design of questions and materials for the discussions was developed through consultation with the university department's service user lead and dementia specialist and reviewed by a service user member living with dementia. A pilot focus group was conducted with a group of carers. We worked with the dementia café managers to coordinate recruitment and a suitable environment to run the focus groups. Not applicable.

A meta-analysis of person-centered care interventions for improving health outcomes in persons living with dementia.

Person-centered care emphasizes the importance of valuing and supporting the humanness of a person living with dementia as compared to focusing heavily on disease symptom management and treatment. The state of the evidence and outcomes from person-centered care is unclear and is an important knowledge gap to address informed evidence-based care for persons living with dementia. To synthesize the evidence on the efficacy of person-centered care in improving health outcomes in people living with dementia. Our search using the following databases: Academic Search Complete, CINAHL, COCHRANE library, EMBASE, MEDLINE, PubMed, and Google Scholar. The methodology quality of the included studies was assessed using a revised Cochrane risk-of-bias tool for randomized trials. Meta-analyses were performed using the DerSimonian and Laird random effects model to investigate the effectiveness of person-centered care on improving health outcomes in persons living with dementia. Seventeen trials were included in this systematic review and meta-analysis. Person-centered care implementation was found to improve cognitive function (pooled SMD: 0.22; 9CRD420223808975% CI [0.04, 0.41], p = .02) in persons living with dementia, although outcomes including the impact of the care model on activities of daily living, agitation, depression, and quality of life remain inconclusive. Person-centered care improves the cognitive function of persons living with dementia, which is clinically meaningful and should not be ignored or overlooked in delivering evidence-based care to this population. The findings of this study emphasize the importance of person-centered care implementation among people living with dementia as an approach in improving health outcomes particularly on cognitive function improvement. Person-centered care emphasizes the personhood of individuals living with dementia while respecting their needs, values, and beliefs and is identified as a preferred model of delivering dementia care in all settings as a non-pharmacological approach.

Quality of care for community-dwelling older adults living with dementia in BC: an interrupted time-series analysis to examine the effect of the COVID-19 pandemic

ObjectiveQuality care for older adults living with dementia (OALwD) is a priority in Canada, nationally, and British Columbia (BC), provincially. The COVID-19 pandemic likely changed care quality, but this has not been assessed. We are examining the effect of pandemic-related policy changes on quality of care for community-dwelling OALwD in BC. ApproachThis population-based retrospective cohort study uses linked administrative data to examine trends in population-level indicators of quality care from 2016-2023. We will compare effects among community-dwelling BC residents aged 65+ with dementia and those without dementia. Indicators including hospitalization rate and medication use were selected, based on the Institute of Medicine’s six dimensions of quality (e.g., effectiveness, safety). Interrupted time series (ITS) analysis will examine changes between “pre-pandemic” and “in-pandemic” periods. Equity will be assessed through stratification by sociodemographic variables. Anticipated ResultsPercent change in the level and slope of each indicator’s trend will be reported. Single ITS will identify the effect of the pandemic on each outcome in the dementia group only. Controlled ITS will identify whether changes differ from those observed in older adults without dementia. Together, observed changes in the indicators and differences across equity factors will inform an interpretation of the overall effect of the pandemic on quality of care for community-dwelling OALwD in BC. ImplicationsWe will determine whether quality of care changed for older adults because of the pandemic and whether changes differed for OALwD. This knowledge will inform practice and policy for delivery of high quality, proactive dementia care.

Nursing staff's attitudes towards the prevention of adverse events among hospitalized people with dementia: Protocol of qualitative systematic review and evidence synthesis.

People with dementia are more likely than people without dementia to be hospitalized and to experience in-hospital preventable adverse events, such as falls, skin injury, and infection, compared to other hospitalized groups. Negative attitudes towards people with dementia are common among acute healthcare workers and have been linked to a cascade of negative adverse events in this population. However, no qualitative systematic review has ever been conducted to synthesize the existing evidence in this area, which hampers the development of preventative measures. This is a protocol for a qualitative systematic review aimed at exploring and synthesizing existing qualitative evidence regarding the attitudes of nursing staff towards the prevention of adverse events among hospitalized people with dementia. Literature searches will be performed in PubMed, CINAHL, PsycINFO, Web of Science, Biblioteca Virtual de Salud, Scopus, The Cochrane Library, and Google Scholar. The references of eligible studies will be checked for eligibility. All primary qualitative or mixed-methods studies with a qualitative component published in peer-reviewed academic journals in English, Portuguese, or Spanish will be eligible. There will be no limitations to the date of publication. The selection process will be conducted independently by two researchers using the software Rayyan and then compared and discussed. Any disagreements regarding eligibility will be discussed among the entire research team and resolved via consensus. Methodological quality will be assessed using Cochrane's guidance. A meta-aggregative approach will be employed to extract and synthesize the evidence using the software package QARI from the JBI. The confidence in the findings will be graded using ConQual. This review will help identify and better understand specific attitudinal and psychosocial aspects that influence nursing care delivery for people with dementia in hospital settings. Such data can be used to generate novel explanatory models of nursing behaviors in dementia care, as well as capacity building and training to enhance hospital care for people with dementia globally.

Understanding the role of agency in the navigation of regional dementia care and support service pathways.

Reliable dementia care and support service pathways are essential for timely diagnoses and for reducing the delay in time from diagnosis to care and support. However, carers commonly experience difficulties in finding information about where to go and what to do before and following a dementia diagnosis. In rural and regional areas, accessing dementia care and support services can be especially challenging. This qualitative, narrative inquiry study explores the agency of carers, and people living with dementia, in their navigation of regional dementia care and support service pathways. Semi-structured interviews were conducted with ten carers of people living with dementia from a regional location in Victoria, Australia. Data analysis was guided by the tripartite framework of Giddens' Theory of Structuration which considered the carers' intentionality, capacity and power to act in the navigation of their dementia care and support service pathways. Carers had intentionality; however, they did not always have the capacity and power to act. Information played a critical role in facilitating agency. Health literacy was important - as knowledge about where to look for/find information, and knowledge gained through experience, education or learning from others. Where carers encountered barriers, they lacked capacity and power. This occurred where there was an absence of information or knowledge, incorrect information (e.g. misdiagnoses), and where government bodies impeded carers' efforts. Information and knowledge are critical to the progression of dementia care and support service pathways. Health literacy is a significant resource, and carers would benefit from dementia education/training. The agency of carers in navigating their dementia care and support service pathways relies on carers themselves finding information and seeking out knowledge and education. However, GPs, local health providers, and dementia organisations have an important role to play in helping carers to find information towards accessing dementia care and support services.

Motivations of family advisors in engaging in research to improve a palliative approach to care for persons living with dementia: an interpretive descriptive study

BackgroundA Strategic Guiding Council (SGC) was created within a Family Carer Decisions Support study, to engage family carers of persons with advanced dementia as advisors to inform the design and implementation of the study. The SGC consists of an international group of family advisors from Canada, the Republic of Ireland, the United Kingdom, the Netherlands, and the Czech Republic. There are limited studies that have explored the integration of Patient and Public Involvement (PPI) in dementia research, end-of-life care and long-term care. Therefore, this study explores PPI engagement in health research with family carers to understand further their interest in being involved in the SCG within the FCDS intervention which is focused on supporting caregivers to make decisions about end-of-life care for residents with advanced dementia.MethodsThis study utilized an interpretive descriptive design and explored the motivations of ten family advisors from Canada, the Republic of Ireland, the United Kingdom, and the Netherlands in being part of the SGC. Semi-structured interviews were conducted by phone or videoconferencing and were recorded, transcribed, and analyzed using thematic analysis.ResultsThree themes generated from the findings of the study were (1) engaging in reciprocal learning; (2) using lived experience to support other family carers; and (3) creating a collective momentum for advocacy and change.ConclusionsFamily carers motivations to being part of the SCG was driven by their intent to help carers navigate the health system and to create a psychosocial support system for other carers experiencing end-of-life with their loved ones. Being part of the SCG provided a benefit to family carers which provided a venue for them to contribute meaningful information from their experience, learn from other health professionals, research and other advisors and an avenue for advocacy work to improve access to end-of-life care supports through education. To our knowledge, this is the first study that explores the motivations of an international group of family advisors’ engagement in health research to promote integration of a palliative approach to dementia care in long-term care homes. This study further contributes to the literature from an international perspective the importance of PPI in research. Further research is warranted that explores PPI in research to improve access to end-of-life supports.

Characteristics of people diagnosed with dementia vs lung cancer and cardiovascular disease at commencement of community palliative care: a population–based study

BackgroundMost people diagnosed with dementia live and die in community settings. This study aimed to: (i) describe the palliative care needs of patients with dementia at commencement of community palliative care; (ii) compare palliative care needs between patients with dementia and those with lung cancer and cardiovascular disease (CVD).MethodsThis is a population-based descriptive study that involved 8,727, 7,539 and 25,279 patients who accessed community palliative care across Australia principally because of dementia, CVD and lung cancer. Patients’ functional abilities, symptom burden and clinical condition were assessed at commencement of community alliative care using five validated instruments: Resource Utilisation Groups—Activities of Daily Living, Australia-modified Karnofsky Performance Status, Symptoms Assessment Scale, Palliative Care Problem Severity Score and Palliative Care Phase. We fitted ordinal logistic regression models to examine the differences in these assessments for dementia versus CVD and lung cancer, respectively.ResultsOverall, patients with dementia generally had low levels of distress from symptoms but poor functional problems. Compared to the other two diagnostic groups, palliative care for dementia was often initiated later and with shorter contacts. Also, patients with dementia presented with poorer functional performance (adjusted OR (aOR) = 4.02, Confidence Interval (CI): 3.68 – 4.38 for dementia vs CVD; aOR = 17.59, CI: 15.92 – 19.44 for dementia vs lung cancer) and dependency (aOR = 5.68, CI: 5.28 – 6.12 for dementia vs CVD; aOR = 24.97, CI: 22.77 – 27.39 for dementia vs lung cancer), but experienced lower levels of distress and problem severity for the majority of symptoms.ConclusionCommunity palliative care is often an ideal care option for many patients, particularly for those with dementia. We call for expansion of the palliative care workforce and options for home care support to optimize accessibility of community palliative care for dementia.

Enhancing Care for Older Adults and Dementia Patients With Large Language Models: Proceedings of the National Institute on Aging-Artificial Intelligence & Technology Collaboratory for Aging Research Symposium.

Large Language Models (LLMs) stand on the brink of reshaping the field of aging and dementia care, challenging the one-size-fits-all paradigm with their capacity for precision medicine and individualized treatment strategies. The "Large Pre-Trained Models with a Focus on AD/ADRD and Healthy Aging" symposium, organized by the National Institute on Aging and the Johns Hopkins Artificial Intelligence & Technology Collaboratory for Aging Research, served as a platform for exploring this potential. The symposium brought together diverse experts to discuss the integration of LLMs in aging and dementia care. They highlighted the roles LLMs can play in clinical decision support and predictive analytics, while also addressing critical ethical concerns including bias, privacy, and the responsible use of artificial intelligence (AI). The discussions focused on the need to balance technological advancement with ethical considerations in AI deployment. In conclusion, the symposium projected a future where LLMs not only revolutionize healthcare practices but also pose significant challenges that require careful navigation.

Towards Establishing Quality Standards on Human Rights for Services in Dementia Care.

People with dementia often experience violations of fundamental human rights and impeded access to healthcare. This study aims to investigate the views of experts regarding the use of the United Nations Convention on the Rights of People with Disabilities (CRPD) principles as quality standards for human rights-based care. A single-round Delphi e-consultation with 15 dementia experts was designed to evaluate each CRPD principle and collect feedback on their views about the application of the CRPD principles in dementia care. The CRPD principles were fully endorsed as quality standards; however, several experts commented on the complexities of the use of CRPD principles in relation to information disclosure, capacity assessment, stakeholders' involvement in decision-making, respecting needs and preferences, holistic approaches in care practice, and protection against abuse, neglect and discrimination. These findings indicate the CRPD quality standards were fully applicable for people with dementia although some clarification around interpretation could assist in their use. Future research should elaborate on further points of support and guidance for dementia care providing examples of good practice from across the globe, and develop a concordant, human rights-based scheme for the implementation and evaluation of dementia services. This study suggests that the CRPD can serve as a benchmark for human rights-based practices in dementia services globally that could enhance nursing care practice. Nursing staff are encouraged to consider human rights in relation to the complexities associated with people with dementia, their caregivers, and other services involved in their care.

Healthcare Professionals’ Perspectives on Dignity in Dementia: A Qualitative Analysis

In dementia care, the concept of dignity has garnered substantial attention from both researchers and policymakers. However, the concept often remains vague and open to interpretation, potentially leading to misunderstandings and suboptimal care for people with dementia. As healthcare professionals occupy a critical role in upholding dignity, exploring their viewpoints on this complex concept is paramount. In this study, we explore Danish healthcare professionals’ views on the dignity of people with dementia and discuss these perspectives against existing theoretical accounts. We employed thematic analysis of data collected during facilitated discussions with a total of 99 healthcare professionals, including nurses and healthcare workers, during which we posed the question, “What is dignity to you?” and documented their perspectives. Through a systematic process of data coding and interpretation, we identified recurring patterns in their responses. This approach allowed us to uncover the depth and complexity of their viewpoints, providing valuable insights into the multifaceted nature of dignity as perceived by healthcare professionals. Our findings revealed that healthcare professionals possessed a nuanced understanding of dignity, recognizing both a subjective element and a universal aspect applicable to all individuals, aligning with theoretical interpretations. However, conceptual ambiguity remained a challenge.

Quality indicators to monitor the quality and safety of care for older people: a scoping review protocol.

The objective of this review is to identify quality indicators used to monitor the quality and safety of care provided to older people (≥ 65 years old) in 8 care settings: primary care; hospital/acute care; aged care (including residential aged care and home or community care); palliative care; rehabilitation care; care transitions; dementia care; and care in rural areas. There is a need for high-quality, holistic, person-centered care for older people. Older people receive care across multiple care settings, and population-level monitoring of quality and safety of care across settings represents a significant challenge. National and international quality indicators used to monitor and evaluate the quality and safety of care at the population level for older individuals in the 8 key care settings will be considered for inclusion. English-language quantitative and mixed method studies published from 2012 will be considered. Academic (MEDLINE, Embase) and gray (government websites, clinical guidelines, Google) literature searches will be conducted. A standardized data extraction tool will be used to describe the identified quality indicators and associated tools. Quality indicators will be categorized by key domains (ie, pain, function, consumer experience, service delivery); quality indicator type (structure, process, outcome); and the Institute of Medicine's 6 dimensions of care quality (eg, efficiency, effectiveness, appropriateness, accessibility, acceptability/person-centered, safety). The scoping review will be conducted in accordance with the JBI methodology for scoping reviews and will follow the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Open Science Framework https://osf.io/8czun.