Supporting early-career dementia researchers: Identifying support needs and ways forward via a European study.

INTRODUCTION: Early-career researchers contribute significantly to dementia research and clinical practice. However, a growing group of early-career dementia researchers (ECDRs) lack appropriate support throughout their careers. Thus, we aim to (i) explore support needs, (ii) determine recommendations, and (iii) set the agenda for organizations to better support ECDRs. METHODS: An iterative, explanatory sequential mixed-methods design was applied. First ECDRs' needs were identified using an online survey informed by the Vitae Researcher Development Framework. Next, priority areas were selected and explored qualitatively with ECDRs in two workshops, utilizing the World Café methodology. RESULTS: Sixty-five ECDRs throughout Europe completed the survey, with the majority reporting that greater support is needed in terms of funding and career opportunities, social support and well-being, and "wide-reaching" dissemination. DISCUSSION: Based on the findings, six recommendations for support organizations, funding bodies, and universities to better support ECDRs are formulated, each intended for specific target audiences. HIGHLIGHTS: This article reports on focal points of career-related support needed in doctoral education and postdoctoral employment to foster a healthier academic environment, including finance, work-life balance, dissemination of research findings, and supervision, both in general and in dementia fields specifically. Funding and resources were identified as a significant challenge, and there was a call for more long-term positions and transition funding for postdoctoral researchers. Early-career dementia researchers addressed the need for support in producing outputs for non-academic audiences, including people living with dementia. The importance of disseminating research to diverse audiences has long been recognized; thus, it is critical that early-career dementia researchers be supported in this effort. Recommendations were formulated for researcher support (organizations), funding bodies, and universities. These recommendations include providing support for disseminating research to non-academic audiences, offering training in supervision skills, and promoting peer-to-peer mentoring and social activities for early-career dementia researchers.

Caregiver Experiences Navigating the Diagnostic Journey in a Rapidly Progressing Dementia.

INTRODUCTION: People with suspected Alzheimer's disease and related dementias (ADRD) and their families experience a burdensome process while seeking a diagnosis. These challenges are problematic in the most common dementia syndromes, but they can be even more distressing in rarer, atypical syndromes such as rapidly progressive dementias (RPDs), which can be fatal within months from onset. This study is an examination of the diagnostic journey experience from the perspective of caregivers of people who died from the prototypic RPD, sporadic Creutzfeldt-Jakob Disease (sCJD). METHODS: eIn this mixed-methods study, qualitative data were drawn from interviews with former caregivers of 12 people who died from sCJD. Chart review data were drawn from research and clinical chart data about the person with sCJD. Data were analyzed by a multidisciplinary research team using qualitative and descriptive statistical analysis. RESULTS: We identified 4 overarching themes that characterized the experience of the diagnostic journey in sCJD: clinician knowledge, clinician communication, experiences of uncertainty, and the caregiver as advocate. We also identified 4 phases along the diagnostic journey: recognition, the diagnostic workup, diagnosis, and post-diagnosis. Sub-themes within each phase include struggles to recognize what is wrong, complex processes of testing and referrals, delay and disclosure of diagnosis, and access to resources post-diagnosis. CONCLUSIONS: Findings suggest that more work is needed to improve clinician diagnostic knowledge and communication practices. Furthermore, caregivers need better support during the diagnostic journey. What we learn from studying sCJD and other RPDs is likely applicable to other more common dementias.

Effects of a theory-based advance care planning intervention for nursing homes: A cluster randomized controlled trial.

BACKGROUND: Uptake of advance care planning in routine nursing home care is low. Through extensive literature review, theoretical development, and stakeholder involvement, we developed the ACP+ intervention. AIMS: To evaluate the effects of ACP+ on the knowledge and self-efficacy (confidence in own skills) of nursing home care staff concerning advance care planning. DESIGN: Cluster randomized controlled trial, conducted between February 2018 and January 2019 (NCT03521206, clinicaltrials.gov). ACP+ is a multicomponent intervention aimed at training and supporting nursing home staff and management in implementing advance care planning in nursing home practice through a train-the-trainer approach over 8 months. Fourteen nursing homes were randomized using a matched-pairing strategy, seven received ACP+, seven followed usual practice. Analyses (intention-to-treat) involved linear mixed models. SETTING/PARTICIPANTS: Nursing homes in Flanders (Belgium). RESULTS: 694 of 1017 care staff (68% response rate) at baseline and 491 of 989 care staff (50%) post-intervention (8 months) returned questionnaires. Post-intervention, care staff's self-efficacy concerning advance care planning was significantly higher in the intervention than in the control group (baseline-adjusted mean difference 0.57; 95% CI 0.20-0.94; p = 0.003; Cohen's d = 0.30). Advance care planning knowledge (95% CI 0.95-1.15; p = 0.339; ratio: 1.04) did not differ significantly between groups. CONCLUSIONS: The ACP+ intervention for nursing homes improved care staff's self-efficacy but not their knowledge concerning advance care planning. Considering the comprehensive and multi-component approach used, these effects were smaller than expected. Reasons for this may be related to the chosen follow-up period, outcomes and measurements, or to the intervention itself and its implementation.

The BOOST paediatric advance care planning intervention for adolescents with cancer and their parents: development, acceptability and feasibility.

BACKGROUND: Although advance care planning (ACP) has been widely recommended to support patient and family engagement in understanding the patient's values, preferences and goals of care, there are only a few models in paediatric oncology that capture ACP as a process of behaviour change. We aimed to develop and test the acceptability and feasibility of BOOST pACP (Benefits of Obtaining Ownership Systematically Together in paediatric Advance Care Planning) - an intervention to improve ACP in adolescents with cancer, their parents and paediatric oncologists. METHODS: Several methods informed the intervention development process: 1) Problem identification: interviews with 11 healthcare professionals working in paediatric oncology; 2) Identification of evidence: literature review of existing pACP tools and barriers and facilitators in performing pACP; 3) Logic model and 4) Intervention design: collaborative expert meetings with researchers and professionals in pACP; 5a) Acceptability test of the materials: interviews with nine healthcare professionals, four adolescents and young adults with cancer and six parents; 5b) Feasibility test of core intervention components with three families, including interviews about their experiences. RESULTS: The BOOST pACP intervention was iteratively developed and adapted, based on feedback from families, healthcare professionals, and pACP experts (e.g., components were changed, deleted, and added; formulation of themes and associated questions were amended to enhance acceptability). The core components of the BOOST pACP intervention include: four ACP conversation sessions with the adolescent and/or parent(s) provided by a trained facilitator, structured by interactive conversation cards covering different ACP themes, followed by a transfer of information from the intervention facilitator to the paediatric oncologist. Core intervention components were deemed feasible by all participating families. CONCLUSION: The BOOST pACP intervention was developed by close involvement of both adolescent patients and their parents, healthcare professionals and pACP experts. The final intervention and supporting materials are considered appropriate and feasible. Its effectiveness in improving parent-adolescent communication on ACP themes is currently being tested in a multi-centre randomised controlled trial. Researchers aiming to develop a complex psychosocial intervention for a vulnerable target group could use the step-by-step approach described in this paper.

Advance care planning for adolescents with cancer and their parents: study protocol of the BOOST pACP multi-centre randomised controlled trial and process evaluation.

BACKGROUND: Research has highlighted the need for evidence-based interventions to improve paediatric advance care planning (pACP) in adolescents with cancer. Although adolescents express the desire and ability to share their values, beliefs and preferences for treatment, there is a lack of structured multicomponent interventions to improve parent-adolescent communication on different ACP themes including those not limited to end-of-life care. The aim of this study is to evaluate the effectiveness and implementation, context and mechanisms of impact of a novel ACP program in paediatric oncology. METHODS: We will conduct a multi-centre parallel-group randomised controlled superiority trial with embedded mixed-methods process evaluation in Flanders, Belgium. Adolescents aged 10-18 who have cancer, and their parent(s) will be recruited via all four university hospitals in Flanders, Belgium, and support groups. Families will be randomised to receive care as usual or the multicomponent BOOST pACP program, consisting of three conversation sessions between an external facilitator and the adolescent and parent(s). The primary endpoint is improved parent-adolescent communication from the perspective of the adolescent. Secondary endpoints are adolescents' and parents' attitudes, self-efficacy, intention and behaviour regarding talking about ACP themes with each other, parents' perspective of shared decision making in the last clinical encounter, and the paediatric oncologist's intention and behaviour regarding talking about ACP themes with the family. Measurements will be performed at baseline, at 3 months and at 7 months using structured self-reported questionnaires. We will perform a process evaluation in the intervention group, with measurement throughout and post-intervention, using structured diaries filled out by the facilitators, interviews with facilitators, interviews with involved paediatric oncology teams, and audio-recordings of the BOOST pACP conversations. DISCUSSION: The BOOST pACP program has been developed to stimulate conversations on ACP themes between parent(s) and the adolescents, simultaneously lowering the threshold to discuss similar themes with healthcare professionals, initiating a process of normalization and integration of ACP in standard care. This combined outcome and process evaluation aims to contribute to building the necessary evidence to improve ACP in paediatric oncology. TRIAL REGISTRATION: The study is registered at ISRCTN, ISRCTN33228289 . Registration date: January 22, 2021.

Differences in advance care planning among nursing home care staff.

BACKGROUND: A team-based approach has been advocated for advance care planning in nursing homes. While nurses are often put forward to take the lead, it is not clear to what extent other professions could be involved as well. OBJECTIVES: To examine to what extent engagement in advance care planning practices (e.g. conversations, advance directives), knowledge and self-efficacy differ between nurses, care assistants and allied care staff in nursing homes. DESIGN: Survey study. PARTICIPANTS/SETTING: The study involved a purposive sample of 14 nursing homes in Flanders, Belgium. Nurses, care assistants and allied care staff (e.g. social workers, physical therapists) completed a survey. ETHICAL CONSIDERATIONS: The study was approved by the University Hospital of Brussels (B.U.N. 143201834759), as part of a cluster randomized controlled trial (clinicaltrials.gov NCT03521206). RESULTS: One hundred ninety-six nurses, 319 care assistants and 169 allied staff participated (67% response rate). After adjusting for confounders, nurses were significantly more likely than care assistants to have carried out advance care planning conversations (odds ratio 4; 95% confidence interval 1.73-9.82; p < 0.001) and documented advance care planning (odds ratio 2.67; 95% confidence interval 1.29-5.56; p < 0.001); differences not found between allied staff and care assistants. Advance care planning knowledge total scores differed significantly, with nurses (estimated mean difference 0.13 (score range 0-1); 95% confidence interval 0.08-0.17; p < 0.001) and allied staff (estimated mean difference 0.07; 95% confidence interval 0.03-0.12; p < 0.001) scoring higher than care assistants. We found no significant differences regarding self-efficacy. DISCUSSION: While nursing home nurses conducted more advance care planning conversations and documentation than allied care staff and care assistants, these two professional groups may be a valuable support to nurses in conducting advance care planning, if provided with additional training. CONCLUSIONS: Allied care staff and care assistants, if trained appropriately, can be involved more strongly in advance care planning to enhance relational and individual autonomy of nursing home residents, alongside nurses. Future research to improve and implement advance care planning should consider this finding at the intervention development stage.

Nurses' self-efficacy, rather than their knowledge, is associated with their engagement in advance care planning in nursing homes: A survey study.

BACKGROUND: Considering social cognitive theory and current literature about successful advance care planning in nursing homes, sufficient knowledge and self-efficacy are important preconditions for staff to be able to carry out advance care planning in practice. AIM: Exploring to what extent nurses' knowledge about and self-efficacy is associated with their engagement in advance care planning in nursing homes. DESIGN: Survey study as part of a baseline measurement of a randomised controlled cluster trial (NCT03521206). SETTING/PARTICIPANTS: Nurses in a purposive sample of 14 nursing homes in Belgium. METHODS: A survey was distributed among nurses, evaluating knowledge (11 true/false items), self-efficacy (12 roles and tasks on 10-point Likert-type scale) and six advance care planning practices (yes/no), ranging from performing advance care planning conversations to completing advance directives. RESULTS: A total of 196 nurses participated (66% response rate). While knowledge was not significantly associated with advance care planning practices, self-efficacy was. One unit's increase in self-efficacy was statistically associated with an estimated 32% increase in the number of practices having carried out. CONCLUSIONS: Nurses' engagement in advance care planning practices is mainly associated with their self-efficacy rather than their knowledge. Further research is necessary to improve the evidence regarding the causal relationship between constructs. However, these results suggest that educational programmes that focus solely on knowledge might not lead to increasing uptake of advance care planning in nurses.

Implementing the theory-based advance care planning ACP+ programme for nursing homes: study protocol for a cluster randomised controlled trial and process evaluation.

BACKGROUND: Research has highlighted the need for improving the implementation of advance care planning (ACP) in nursing homes. We developed a theory-based multicomponent ACP intervention (the ACP+ programme) aimed at supporting nursing home staff with the implementation of ACP into routine nursing home care. We describe here the protocol of a cluster randomised controlled trial (RCT) that aims to evaluate the effects of ACP+ on nursing home staff and volunteer level outcomes and its underlying processes of change. METHODS: We will conduct a cluster RCT in Flanders, Belgium. Fourteen eligible nursing homes will be pair-matched and one from each pair will be randomised to either continue care and education as usual or to receive the ACP+ programme (a multicomponent programme which is delivered stepwise over an eight-month period with the help of an external trainer). Primary outcomes are: nursing home care staff's knowledge of, and self-efficacy regarding ACP. Secondary outcomes are: 1) nursing home care staff's attitudes towards ACP and ACP practices; 2) support staff's and volunteer's ACP practices and 3) support staff's and volunteers' self-efficacy. Measurements will be performed at baseline and eight months post-measurement, using structured self-reported questionnaires. A process evaluation will accompany the outcome evaluation in the intervention group, with measurements throughout and post-intervention to assess implementation, mechanisms of impact and context and will be carried out using a mixed-methods design. DISCUSSION: There is little high-quality evidence regarding the effectiveness and underlying processes of change of ACP in nursing homes. This combined outcome and process evaluation of the ACP+ programme aims to contribute to building the necessary evidence to improve ACP and its uptake for nursing home residents and their family. TRIAL REGISTRATION: The study is registered at ClinicalTrials.gov (no. NCT03521206). Registration date: May 10, 2018. Inclusion of nursing homes started March, 2018. Hence, the trial was retrospectively registered but before end of data collection and analyses.

Palliative care service use by older people: Time trends from a mortality follow-back study between 2005 and 2014.

BACKGROUND: The need for increased use and timely initiation of palliative care for all people, not just those who die with cancer, has been advocated worldwide over the past decade. AIM: To investigate whether there has been a time trend in the use of palliative care services and the timing of their initiation for older people. DESIGN: Mortality follow-back survey among general practitioners in a nationally representative Sentinel Network in 2005-2010, 2013 and 2014 in Belgium. SETTING/PARTICIPANTS: Of all their patients who died non-suddenly aged 65+ years, general practitioners reported sociodemographic and clinical data, use of any of the palliative care services available in Belgium and when the first of these services was initiated. RESULTS: General practitioners identified 5344 deaths. Overall, palliative care service use increased from 39% in 2005 to 63% in 2014 ( p < 0.001). The use of a reference person for palliative care in a care home increased from 12% to 26% ( p < 0.001) and of a palliative homecare team from 14% to 17.5% ( p < 0.01), but hospital-based palliative care services did not increase. Controlling for sociodemographic characteristics, no differences were obtained over time in the proportion of cancer/non-cancer patients for whom they provided care. The timing of initiation of palliative care services remained unchanged at a median of 15 days before death. CONCLUSION: Palliative care service use has increased mostly in care homes, possibly as a result of policy changes, while hospital-based palliative care services lag behind. Contrary to recommendations, access for non-cancer patients may remain difficult and palliative care is often initiated late in the disease trajectory.

Advance care planning in dementia: recommendations for healthcare professionals.

BACKGROUND: Advance care planning (ACP) is a continuous, dynamic process of reflection and dialogue between an individual, those close to them and their healthcare professionals, concerning the individual's preferences and values concerning future treatment and care, including end-of-life care. Despite universal recognition of the importance of ACP for people with dementia, who gradually lose their ability to make informed decisions themselves, ACP still only happens infrequently, and evidence-based recommendations on when and how to perform this complex process are lacking. We aimed to develop evidence-based clinical recommendations to guide professionals across settings in the practical application of ACP in dementia care. METHODS: Following the Belgian Centre for Evidence-Based Medicine's procedures, we 1) performed an extensive literature search to identify international guidelines, articles reporting heterogeneous study designs and grey literature, 2) developed recommendations based on the available evidence and expert opinion of the author group, and 3) performed a validation process using written feedback from experts, a survey for end users (healthcare professionals across settings), and two peer-review groups (with geriatricians and general practitioners). RESULTS: Based on 67 publications and validation from ten experts, 51 end users and two peer-review groups (24 participants) we developed 32 recommendations covering eight domains: initiation of ACP, evaluation of mental capacity, holding ACP conversations, the role and importance of those close to the person with dementia, ACP with people who find it difficult or impossible to communicate verbally, documentation of wishes and preferences, including information transfer, end-of-life decision-making, and preconditions for optimal implementation of ACP. Almost all recommendations received a grading representing low to very low-quality evidence. CONCLUSION: No high-quality guidelines are available for ACP in dementia care. By combining evidence with expert and user opinions, we have defined a unique set of recommendations for ACP in people living with dementia. These recommendations form a valuable tool for educating healthcare professionals on how to perform ACP across settings.

Identification of older adults with Alzheimer's and related dementias among patients newly diagnosed with cancer: A comparison of methodological approaches.

INTRODUCTION: Research efforts to characterize and evaluate care delivery and outcomes for older adults with cancer and comorbid dementia are limited by varied methods used to classify Alzheimer's disease and related dementias (ADRD). The purpose of this study is to evaluate differences in demographic, clinical, and cancer characteristics of people newly diagnosed with cancer and concomitant dementia comparing two common methods to identify ADRD using administrative claims data. MATERIALS AND METHODS: We conducted a retrospective cohort study using Surveillance, Epidemiology, and End Results (SEER)-Medicare data. Our sample included adults aged 66 years and older with a first primary diagnosis of lung or colorectal cancer between 2011 and 2017. For each cancer diagnosis, we constructed analytical cohorts using the Center for Medicare and Medicaid Services' Chronic Condition Warehouse (CCW) flag and the Bynum-Standard one- and three-year algorithms to capture diagnosed ADRD. We estimated ADRD prevalence using the algorithms and compared Bynum and CCW cohorts on demographic, clinical, and cancer characteristics at cancer diagnosis and survival for lung and colorectal cancer separately. RESULTS: Among older adults with lung cancer, ADRD prevalence was 4.7% with the one-year Bynum, 6.5% with the three-year Bynum, and 12.5% using the CCW flag. In the colorectal cohort, ADRD prevalence was 5.6% with the one-year Bynum, 7.6% with the three-year Bynum, and 14.1% with the CCW flag. Demographic characteristics were similar across ADRD cohorts. The Bynum cohorts identified higher proportions of individuals with moderate to severe dementia (13.8% and 11.2% versus 7.1% CCW in lung cancer; 13.1% and 10.6% versus 6.8% CCW in colorectal cancer), higher frailty rates (27.4% and 22.7% versus 15.0% CCW in lung cancer; 26.4% and 22.3% versus 14.8% CCW in colorectal cancer). Median survival was lower for the Bynum cohorts compared to the CCW, regardless of cancer type. DISCUSSION: Findings demonstrate that ADRD prevalence and certain clinical characteristics vary based on dementia ascertainment method and observation period used to classify individuals with ADRD. Considering differences in the cohorts of registry cases generated by the identification method used is essential when interpreting findings related to treatment, utilization, and outcomes within and across cancer cohorts.

Palliative Care in Early Dementia.

BACKGROUND: Palliative care is recommended for all people with dementia from diagnosis through end-of-life. However, palliative care needs and effective elements of palliative care are not well-defined for the earlier stages of dementia. OBJECTIVE: To systematically map current research on palliative care early in the disease trajectory of dementia. DESIGN: Scoping review of scientific literature. DATA SOURCES: PubMed, CINAHL, EMBASE, Cochrane, PsycINFO, Web of Science. REVIEW METHODS: We included studies published in English over the last decade (through March 2022) that focused on palliative care in early stages of dementia and targeted outcomes in palliative care domains. Two authors independently screened abstracts and full texts and scored the quality of included studies using tools by the Joanna Briggs Institute. RESULTS: Among the 77 papers reviewed, few addressed early stages of dementia specifically. We found that: 1) While "early" palliative care was not well-defined in the literature, evidence indicated that palliative care needs were present at or before diagnosis and across the trajectory. Notable opportunities for palliative care arise at 'tipping points' (i.e., when symptoms, functional status, or caregiving needs change). 2) Palliative care needs in early dementia include advocacy for goal-aligned care in the future, reassurance against the threat of negligence and abandonment by caregivers, planning for future scenarios of care (practical, individual, and relational needs), and establishing of long-term relationships with providers entrusted for care later in disease. 3) Elements of effective palliative care in early dementia could include dementia-specific ACP and goals of care discussions, navigation for building a network of support, provision of tools and resources for family, tailored care and knowledge of the person, and well-prepared dementia-care providers. The scarcity of palliative care studies aimed at early disease indicates a gap in the evidence in dementia care. CONCLUSION: The literature on palliative care in early dementia is sparse. Future studies should focus on assessment tools for optimizing timing of palliative care in early dementia, gaining better understanding of patient and family needs during early phases of disease, and providing training for providers and families in long-term relationships and communication around goals of care and future planning.

Action plans increase advance care planning documentation and engagement among English and Spanish-speaking older adults.

BACKGROUND: Advance care planning (ACP) has been reconceptualized as a health behavior. Action plans (APs), or patient-directed mini contracts, improve behavior change. However, no prior studies have assessed whether APs can increase ACP documentation and engagement. METHODS: We included English and Spanish-speaking primary care patients from San Francisco, ≥55 years of age, with ≥2 serious or chronic illnesses. Participants were in the intervention arm of the PREPAREforYOURcare.org trial and asked at baseline to choose 1 of 5 actions (e.g., choose a surrogate). At 6 months, we assessed whether participants completed their AP and if completion was associated with demographics, electronic health record (EHR) ACP documentation, and five-point ACP Engagement Survey scores. We used t-tests, chi-squared, multivariate analysis adjusted for baseline ACP and clustering by physician, and qualitative thematic analysis to explore reasons for non-completion. RESULTS: The mean age of 586 participants was 65 ± 10 years; 44.0% women, 45.9% Spanish-speaking, 31.4% had limited health literacy, and 43% completed an AP at 6 months; surrogate-related (47.4%), tell others about medical wishes (33.7%), ask clinicians questions (13.7%), and decide what matters most in life (5.2%). Participants with limited versus adequate health literacy were less likely to complete an AP (25.4% vs 35.9%, p = 0.01). Completing an AP was associated with greater ACP EMR documentation 49.8% vs 35.6%, p < 0.001 (adjusted odds ratio: 2.06; 95% CI [1.43-2.97]) and engagement (adjusted five-point scores [3.69; 95% CI 3.57-3.81 vs 3.10; 95% CI: 2.98-3.21], p < 0.001). Themes for non-completion included not being ready and logistical issues (e.g., surrogate deceased). CONCLUSIONS: Among English and Spanish-speaking older adults, creating an ACP AP resulted in greater documentation and engagement. APs may help facilitate ACP behavior change as part of effective ACP interventions. Additional support may be needed for patients with limited health literacy and those facing logistical barriers.

Advance Care Planning in Belgium.

This paper aims to 1) describe current levels of Advance Care Planning (ACP) development since 2002 in Belgium, 2) report on challenges and opportunities to inspire other countries with similar contextual characteristics and 3) support further development of ACP practice and research in Belgium. To address these aims, we consulted local researchers, 12 domain experts and (grey) literature (regulatory documents, reports, policy documents and practice guidelines) on ACP, palliative care, and related healthcare topics. Since 2002, when the Patient's Right Law was passed in the federal Parliament, Belgium has had a specific medicolegal context for ACP. Initiatives to improve the uptake of ACP have been taken, e.g. standardised documentation, reimbursement codes for physicians provided by the government, and implementation of quality indicators in hospitals and nursing homes. Most of these initiatives are grassroots or predominantly oriented towards a single group of professions, e.g. general practitioners, disregarding the role that other professions can play. The patient groups most often targeted are those with cancer and older adults. Limited but growing attention is given to those with low health literacy or other minority groups. Main barriers to ACP in Belgium are: no unified platform to exchange outcomes of ACP discussions or advance directives between healthcare professionals and though efforts are made, ACP is still predominantly oriented towards documentation.

Unmet health-related needs of community-dwelling older adults during COVID-19 lockdown in a diverse urban cohort.

BACKGROUND: Shelter-in-place orders during the COVID-19 pandemic created unmet health-related and access-related needs among older adults. We sought to understand the prevalence of these needs among community-dwelling older adults. METHODS: We performed a retrospective chart review of pandemic-related outreach calls to older adults between March and July 2020 at four urban, primary care clinics: a home-based practice, a safety net adult medicine clinic, an academic geriatrics practice, and a safety net clinic for adults living with HIV. Participants included those 60 or older at three sites, and those 65 or older with a chronic health condition at the fourth. We describe unmet health-related needs (the need for medication refills, medical supplies, or food) and access-related needs (ability to perform a telehealth visit, need for a call back from the primary care provider). We performed bivariate and multivariate analyses to examine the association between unmet needs and demographics, medical conditions, and healthcare utilization. RESULTS: Sixty-two percent of people had at least one unmet need. Twenty-six percent had at least one unmet health-related need; 14.0% needed medication refills, 12.5% needed medical supplies, and 3.0% had food insecurity. Among access-related needs, 33% were not ready for video visits, and 36.4% asked for a return call from their provider. Prevalence of any unmet health-related need was the highest among Asian versus White (36.4% vs. 19.1%) and in the highest versus lowest poverty zip codes (30.8% vs. 18.2%). Those with diabetes and COPD had higher unmet health-related needs than those without, and there was no change in healthcare utilization. CONCLUSIONS: During COVID, we found that disruptions in access to services created unmet needs among older adults, particularly for those who self-identified as Asian. We must foreground the needs of this older population group in the response to future public health crises.

Developing neuropalliative care for sporadic Creutzfeldt-Jakob Disease.

We aimed to identify targets for neuropalliative care interventions in sporadic Creutzfeldt-Jakob disease by examining characteristics of patients and sources of distress and support among former caregivers. We identified caregivers of decedents with sporadic Creutzfeldt-Jakob disease from the University of California San Francisco Rapidly Progressive Dementia research database. We purposively recruited 12 caregivers for in-depth interviews and extracted associated patient data. We analysed interviews using the constant comparison method and chart data using descriptive statistics. Patients had a median age of 70 (range: 60-86) years and disease duration of 14.5 months (range 4-41 months). Caregivers were interviewed a median of 22  (range 11-39) months after patient death and had a median age of 59 (range 45-73) years. Three major sources of distress included (1) the unique nature of sporadic Creutzfeldt-Jakob disease; (2) clinical care issues such as difficult diagnostic process, lack of expertise in sporadic Creutzfeldt-Jakob disease, gaps in clinical systems, and difficulties with end-of-life care; and (3) caregiving issues, including escalating responsibilities, intensifying stress, declining caregiver well-being, and care needs surpassing resources. Two sources of support were (1) clinical care, including guidance from providers about what to expect and supportive relationships; and (2) caregiving supports, including connection to persons with experience managing Creutzfeldt-Jakob disease, instrumental support, and social/emotional support. The challenges and supports described by caregivers align with neuropalliative approaches and can be used to develop interventions to address needs of persons with sporadic Creutzfeldt-Jakob disease and their caregivers.

Earlier initiation of palliative care in the disease trajectory of people living with dementia: a scoping review protocol.

INTRODUCTION: While the need for palliative care for people living with dementia has widely been recognised, they continue to be a disadvantaged group when it comes to timely initiation, and controversies remain regarding appropriate timing, or what elements constitute high quality palliative care early in the disease trajectory. To date, no literature review has summarised this debate or offered insights. The aim of this scoping review is to provide a general overview of research regarding palliative care in mild or moderate dementia, to identify existing controversies, and to examine what are key components of palliative care in dementia, specifically when initiated earlier in the disease trajectory. METHODS AND ANALYSIS: Consistent with recent guidelines and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews, we carried out a search for academic literature in PubMed, CINAHL, EMBASE, Cochrane Library, PsycINFO, Web of Science; on 5 November 2019 and an updated search on 2 February 2021. We will include studies with different study designs published in English over the last decade that focused on palliative care in early stages of dementia. We will include models targeting at least one outcome domain of palliative care (physical, psychological, social or spiritual) and advance care planning, and will exclude hospice models with limited prognosis similar to the requirements in the USA. We will report study characteristics and quality. We aim to apply narrative synthesis techniques to develop a theoretical model of how, for whom and why palliative care can be relevant in early stages of dementia, and what are facilitators and barriers. We anticipate to also describe if and how the concept of (early) palliative care in dementia changed across time and studies. ETHICS AND DISSEMINATION: No ethical review required. Results will identify research gaps and lay out basic principles for conceptualising palliative care in early stages of dementia.

Developing eHealth tools for diverse older adults: Lessons learned from the PREPARE for Your Care Program.

BACKGROUND/OBJECTIVES: Electronic Health (eHealth) tools offer opportunities for people to access health information online; yet, most tools are not designed to meet the unique needs of diverse older adults, leading to health disparities. Our goal was to provide guidance for the development of eHealth tools for diverse older populations for use in geriatric care models. DESIGN: Guidance for eHealth tools was compiled from user design resources and eHealth design literature. Pragmatic examples were provided from an evidenced-based eHealth tool called PREPAREforYourCare.org (PREPARE). We used quantitative feasibility data from PREPARE research studies and qualitative analysis of PREPARE focus groups, cognitive interviews, and feedback from randomized trials to further inform our recommendations. RESULTS: Guidance and lessons learned include: (1) define clear objectives and a conceptual framework; (2) co-create with the target population; (3) optimize the design and layout for accessibility and ease of use, such as text at the 5th grade reading level, closed captioning, etc.; (4) use simple, standardized navigation design; (5) use actionable information to enhance behavior change, such as modeling of behaviors; (6) align accompanying written materials with the eHealth tool; and (7) create tracking mechanisms for ongoing user feedback. PREPARE is used as a case example to provide pragmatic illustrations for how the guidance may be operationalized. CONCLUSION: eHealth tools can be tailored to the unique characteristics, preferences, and needs of diverse older populations. Following the "lessons learned" may help decrease health disparities among diverse older adults and ensure eHealth tools are readily accessible and culturally appropriate.

Advance care planning in nursing homes: new conversation and documentation tools.

Although advance care planning (ACP) is highly relevant for nursing home residents, its uptake in nursing homes is low. To meet the need for context-specific ACP tools to support nursing home staff in conducting ACP conversations, we developed the ACP+intervention. At its core, we designed three ACP tools to aid care staff in discussing and documenting nursing home resident's wishes and preferences for future treatment and care: (1) an extensive ACP conversation guide, (2) a one-page conversation tool and (3) an ACP document to record outcomes of conversations. These nursing home-specific ACP tools aim to avoid a purely document-driven or 'tick-box' approach to the ACP process and to involve residents, including those living with dementia according to their capacity, their families and healthcare professionals.

International COVID-19 Palliative Care Guidance for Nursing Homes Leaves Key Themes Unaddressed.

COVID-19 mortality disproportionally affects nursing homes, creating enormous pressures to deliver high-quality end-of-life care. Comprehensive palliative care should be an explicit part of both national and global COVID-19 response plans. Therefore, we aimed to identify, review, and compare national and international COVID-19 guidance for nursing homes concerning palliative care, issued by government bodies and professional associations. We performed a directed documentary and content analysis of newly developed or adapted COVID-19 guidance documents from across the world. Documents were collected via expert consultation and independently screened against prespecified eligibility criteria. We applied thematic analysis and narrative synthesis techniques. We identified 21 eligible documents covering both nursing homes and palliative care, from the World Health Organization (n = 3), and eight individual countries: U.S. (n = 7), The Netherlands (n = 2), Ireland (n = 1), U.K. (n = 3), Switzerland (n = 3), New Zealand (n = 1), and Belgium (n = 1). International documents focused primarily on infection prevention and control, including only a few sentences on palliative care-related topics. Palliative care themes most frequently mentioned across documents were end-of-life visits, advance care planning documentation, and clinical decision making toward the end of life (focusing on hospital transfers). There is a dearth of comprehensive international COVID-19 guidance on palliative care for nursing homes. Most have a limited focus both regarding breadth of topics and recommendations made. Key aspects of palliative care, that is, symptom management, staff education and support, referral to specialist services or hospice, and family support, need greater attention in future guidelines.