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Cultural narratives shape how we think about the world, including how we decide when the end of life begins. Hospice care has become an integral part of the end-of-life care in the United States, but as it has grown, its policies and practices have also imposed cultural narratives, like those associated with the "six-month rule" that the majority of the end of life takes place in the final six months of life. This idea is embedded in policies for a range of care practices and reimbursement processes, even though six months is not always a meaningful marker. In the case of people living with advanced dementia, six months is both too early in the trajectory to facilitate conversations and too late in the trajectory to ensure decision-making capacity. This essay encourages scholars and policy-makers to consider how cultural narratives may limit what they think is possible in care for people living with dementia., (© 2024 The Hastings Center.)

Background: Dementia Care Navigators (DCNs) are professionals without clinical training, who provide individualised emotional and practical support to people living with dementia, working alongside clinical services. Navigator services have been implemented but the service offered vary without a consistent overview provided. The aim of this narrative systematic review was to describe and compare existing service formats, and to synthesise evidence regarding their implementation and impacts. Methods: The review was registered on PROSPERO [CRD42021292518]. Three electronic databases were searched and included studies reported on a DCN service, defined as a service in which non‐clinically trained workers provide personalised advice and support to people with dementia and/or carers in the community. Two independent reviewers screened abstracts and titles and read through full papers for inclusion. Risk of bias was assessed using the Standard Quality Assessment QualSyst. Results: We included 14 papers reporting on six studies. All services were US‐based and only varied by integration and training provided. Studies reported different degrees of impact on service utilisation and on symptoms and mental well‐being of people with dementia and their carers, with too little evidence to draw substantial/meaningful conclusions and studies employing different outcome measures. One study evidenced greater impacts on people with more advanced dementia compared to earlier stages. Conclusions: DCN services have the potential to effectively provide non‐clinical support to people with dementia and carers from the point of diagnosis. Further research from countries other than the USA, focusing on the impact on social care and social support service access and utilisation, and utilising similar established outcome measures are required. Key points: Evidence on the impact of Dementia Care Navigators (DCNs) is limited but shows promising benefits for people living with dementia and their carers.More research needs to be conducted in countries other than the US, where all evidence was reported, and with similar outcome measures to allow comparison.DCNs are a highly useful professional group without medical training, who can navigate people living with dementia and their carers to support and provide support themselves. [ABSTRACT FROM AUTHOR]

Aid-in-dying laws in the United States have two important restrictions. First, only patients who are terminally ill, defined as having a prognosis of six months or less to live, qualify. Second, at the time the patients take the lethal medication, they must be competent to make medical decisions. This means that an advance directive requesting aid in dying for a later time when the patient lacks decision-making capacity would be invalid. However, many people are more concerned about avoiding living into severe dementia for years-a time when they will lack decision-making capacity-than they are about preventing suffering or the loss of dignity or autonomy for a few months at the end of life. Gillian Bennett is an example of someone determined not to live into severe dementia. She opted for preemptive suicide in 2014, explaining why in a letter she posted online: "Every day I lose bits of myself, and it's obvious that I am heading toward the state that all dementia patients eventually get to: not knowing who I am and requiring full-time care." A major problem with Bennett's solution, however, is that the individual is likely thereby to be giving up some "good time." A legal alternative to preemptive suicide is to create an advance directive stating the circumstances under which one wants not to receive any lifesaving or life-sustaining treatment, even the most basic and noninvasive. This option is our focus in this paper: how to create effective advance directives to avoid living into severe dementia. To be relevant to progressive dementia, the directive would need to state what kinds of care should be withheld and when. At the same time, advance directives for severe dementia face serious challenges. Before addressing these, we review the normative force of directives themselves., (© 2018 The Hastings Center.)

Objectives: To determine dementia prevalence and costs attributable to dementia using Veterans Health Administration (VHA) data with and without Medicare data.Data Sources: VHA inpatient, outpatient, purchased care and other data and Medicare enrollment, claims, and assessments in fiscal year (FY) 2013.Study Design: Analyses were conducted with VHA data alone and with combined VHA and Medicare data. Dementia was identified from a VHA sanctioned list of ICD-9 diagnoses. Attributable cost of dementia was estimated using recycled predictions.Data Collection: Veterans age 65 and older who used VHA and were enrolled in Traditional Medicare in FY 2013 (1.9 million).Principal Findings: VHA records indicated the prevalence of dementia in FY 2013 was 4.8 percent while combined VHA and Medicare data indicated the prevalence was 7.4 percent. Attributable cost of dementia to VHA was, on average, $10,950 per veteran per year (pvpy) using VHA alone and $6,662 pvpy using combined VHA and Medicare data. Combined VHA and Medicare attributable cost of dementia was $11,285 pvpy. Utilization attributed to dementia using VHA data alone was lower for long-term institutionalization and higher for supportive care services than indicated in combined VHA and Medicare data.Conclusions: Better planning for clinical and cost-efficient care requires VHA and Medicare to share data for veterans with dementia and likely more generally. [ABSTRACT FROM AUTHOR]

Background: Elder abuse is a major cause of injury, morbidity, and death. We aimed to identify the factors associated with interventions against suspected physical abuse in older adults. Methods: Analysis of the 2017–2018 ACS TQIP. All trauma patients ≥60 years with an abuse report for suspected physical abuse were included. Patients with missing information on abuse interventions were excluded. Outcomes were rates of abuse investigation initiation following an abuse report and change of caregiver at discharge among survivors with an abuse investigation initiated. Multivariable regression analyses were performed. Results: Of 727,975 patients, 1405 (0.2%) had an abuse report. Patients with an abuse report were younger (mean, 72 vs 75, p < 0.001), and more likely to be females (57% vs 53%, p = 0.007), Hispanic (11% vs 6%, p < 0.001), Black (15% vs 7%, p < 0.001), suffer from dementia (18% vs 11%, p < 0.001), functional disability (19% vs 15%, p < 0.001), have a positive admission drug screen (9% vs 5%, p < 0.001) and had a higher ISS (median [IQR], 9 [4–16] vs 6 [3–10], p < 0.001). Perpetrators were members of the immediate/step/extended family in 91% of cases. Among patients with an abuse report, 1060 (75%) had abuse investigations initiated. Of these, 227 (23%) resulted in a change of caregiver at discharge. On multivariate analysis for abuse investigation initiation, male gender, private insurance, and management at non‐level I trauma centers were associated with lower adjusted odds (p < 0.05), while Hispanic ethnicity, positive admission drug screen, and penetrating injury were associated with higher adjusted odds (p < 0.05). On multivariate analysis for change of caregiver, male gender, and private insurance were associated with lower adjusted odds (p < 0.05), while functional disability and dementia were associated with higher adjusted odds (p < 0.05). Conclusions: Significant gender, ethnic, and socioeconomic disparities exist in the management of physical abuse of older adults. Further studies are warranted to expand on and address the contributing factors underlying these disparities. Level of Evidence: III. Study Type: Therapeutic/Care Management. [ABSTRACT FROM AUTHOR]

Introduction: For most older adults with dementia, the short‐term harms and burdens of routine cancer screening likely outweigh the delayed benefits. We aimed to provide a more updated assessment of the extent that US older adults with dementia receive breast and prostate cancer screenings. Methods: Using the Health and Retirement Study (HRS) Wave 12 (2014–2015) linked to Medicare, we examine rates of breast and prostate cancer screenings in adults 65+ years by cognitive status. We used claims data to identify eligibility for screening and receipt of screening. We used a validated method using HRS data to define cognitive status. Results: The analytic sample included 2439 women in the breast cancer screening cohort and 1846 men in the prostate cancer screening cohort. Average ages were 76.8 years for women and 75.6 years for men, with 9.0% and 7.6% with dementia in each cohort, respectively. Among women with dementia, 12.3% were screened for breast cancer. When stratified by age, 10.6% of those 75+ and have dementia were screened for breast cancer. When stratified by predicted life expectancy, 10.4% of those with predicted life expectancy of <10 years and have dementia were screened for breast cancer. Among men with dementia, 33.9% were screened for prostate cancer. When stratified by age, 30.9% of those 75+ and have dementia were screened for prostate cancer. When stratified by predicted life expectancy, 34.4% of those with predicted life expectancy of <10 years and have dementia were screened for prostate cancer. Using multivariable logistic regression, dementia was associated with lower odds of receiving breast cancer screening (OR 0.36, 95% CI 0.23–0.57) and prostate cancer screening (OR 0.58, 95% CI 0.36–0.96). Discussion: Our results suggest potential over‐screening in older adults with dementia. Better supporting dementia patients and caregivers to make informed cancer screening decisions is critical. [ABSTRACT FROM AUTHOR]

Background: Family caregivers offer essential support to persons living with dementia (PLWD). Providing care for more than one family member or close other across adulthood is becoming increasingly common, yet little is known about the ways that caregiving experiences shape caregiver preparedness. The current study presents a grounded theory of future caregiver preparedness in former caregivers of PLWD. Method: A coding team (five coders and two auditors) used Consensual Qualitative Research and grounded theory techniques to analyze transcripts from 32 semi‐structured interviews with midlife former caregivers of parents who died following advanced Alzheimer's disease and related dementias. Results: Qualitative analysis revealed two dimensions of future caregiver preparedness: caregiving confidence and caregiving insights. Narratives from caregiving experiences informed participants' descriptions of their future caregiver preparedness. Though some former caregivers described a positive (i.e., boosted or sustained) sense of caregiving confidence following care for their parents, others described a diminished (i.e., restricted or impeded) sense of confidence. Regardless of their confidence, all caregivers described specific caregiving insights related to one or more categories (i.e., caregiving self‐conduct, care systems and resources, and relating with a care partner). Conclusions: Preparedness for future caregiving following recent care for a PLWD varies: For some, past experiences appear to offer cumulative advantages in anticipating future care roles, whereas for others, past experiences may contribute to apprehension towards, or rejection of, future care roles. Entering new caregiving roles with diminished confidence may have negative consequences for caregivers' and care partners' wellbeing. Multidimensional assessment of future caregiver preparedness in former caregivers of PLWD may support development of resources for former caregivers entering new caregiving roles. [ABSTRACT FROM AUTHOR]

There is a dearth of research on cognitive aging and dementia in Asian Americans, particularly Vietnamese Americans, who are the fourth largest Asian subgroup in the United States. The National Institutes of Health is mandated to make certain that racially and ethnically diverse populations are included in clinical research. Despite the widespread recognition to ensure that research findings can be generalizable to all groups, there are no estimates of the prevalence or incidence of mild cognitive impairment and Alzheimer's disease and related dementias (ADRD) in Vietnamese Americans, nor do we understand ADRD risk and protective factors in this group. In this article, we posit that studying Vietnamese Americans contributes to a better understanding of ADRD in general and offers unique opportunities for elucidating life course and sociocultural factors that contribute to cognitive aging disparities. That is, the unique context of Vietnamese Americans may provide understanding in terms of within‐group heterogeneity and key factors in ADRD and cognitive aging. Here, we provide a brief history of Vietnamese American immigration and describe the large but often ignored heterogeneity of Asian Americans in the United States, elucidate how early life adversity and stress might influence late‐life cognitive aging, and provide a basis for the role of sociocultural and health factors in the study of Vietnamese cognitive aging disparities. Research with older Vietnamese Americans provides a unique and timely opportunity to more fully delineate the factors that contribute to ADRD disparities for all populations. [ABSTRACT FROM AUTHOR]

Background: Despite possible major adverse cognitive, physical, social, and behavioral consequences, little is known about how persons living with dementia perceive satisfaction with life, a key component of well‐being. We sought to examine (i) whether persons living with dementia perceive a lower level of satisfaction compared to their peers without dementia and (ii) whether the associations between individual characteristics and life satisfaction are different between persons living with and without dementia. Methods: Using a nationally representative sample of community‐dwelling older adults aged ≥70 years in the U.S. from the Health and Retirement Study, we compared scores on the Satisfaction with Life Scale (SWLS), a self‐reported 5‐item scale ranging from 1 to 7 (more satisfaction), between persons with probable dementia (n = 341) and those without (n = 5530), adjusting for individual characteristics. We also tested whether the associations between the individual characteristics and SWLS differ by dementia status. Results: Scores on SWLS did not differ between persons with probable dementia and those without when adjusting for individual characteristics including limitations in activities of daily living (ADL) (adjusted difference, −0.09; 95% CI, −0.33 to +0.15; p‐value, 0.45). However, dementia status was associated with lower life satisfaction through the mediation of limitations in ADL (total effect, −0.29; bootstrapped 95% CI, −0.47 to −0.12). Most individual characteristics associated with lower life satisfaction were similar in the two groups, including younger age, more limitations in ADL, and depression. Less wealth was associated with lower satisfaction among persons without dementia but not among those with probable dementia. Conclusions: Dementia status was only modestly associated with lower life satisfaction through the mediation of limitations in ADL among participants who were able to provide response. Future research is warranted to determine whether life satisfaction can be used as a meaningful outcome when evaluating well‐being among persons living with dementia. [ABSTRACT FROM AUTHOR]

Background: Injuries are a leading cause of emergency department (ED) visits among older adults, and individuals with Alzheimer's disease and related dementias (ADRD) may be at particular risk. We compared injury‐related ED use among assisted living (AL) residents with and without ADRD and assessed differences in the risk of injury‐related ED visits among individuals with ADRD residing in ALs with memory care designation versus general AL. Methods: Using Medicare claims, we identified a cohort of fee‐for‐service beneficiaries who lived in AL in 2018 and resided in one of 20 states with site‐specific information on memory care designation (n = 116,754). Outcomes included all injury‐related ED visits and injury‐related ED visits resulting in hospitalization in the calendar year 2018. We fit multilevel models of the association between ADRD and outcomes, adjusting for resident demographic characteristics and chronic conditions, license type characteristics, and AL characteristics, with random intercepts at the AL and license type levels. Among residents with ADRD, we examined whether memory care licensure was associated with injury‐related ED visits. Results: The adjusted risk of injury‐related ED use during the year was 20.1% (95% CI: 19.6%, 20.6%) for residents with ADRD compared to 16.1% for residents without ADRD (95% CI: 15.7%, 16.5%; p < 0.001). The adjusted risk of injury‐related ED use ending in hospitalization was 4.9% (95% CI: 4.6%, 5.1%) for AL residents with ADRD and 3.9% for residents without ADRD (95% CI: 3.8%, 4.1%; p < 0.001). There were no significant differences in injury‐related ED visits between residents with ADRD in ALs with memory care designation and residents in general AL. Conclusions: Injury‐related ED visits are common among AL residents with ADRD and residents in memory care, but residents in memory care AL experienced similar risks of injury as those in general AL. Further research should identify modifiable factors that can prevent injury among AL residents with ADRD. [ABSTRACT FROM AUTHOR]

Background: Antiepileptics are commonly prescribed to nursing home residents with Alzheimer's disease and related dementias (ADRD) but there is little scientific support for their use in this population. It is unclear whether different antiepileptics are targeting different indications. Methods: Using the Minimum Data Set and Medicare data, including Part D pharmacy claims, we constructed annual cohorts of residents with ADRD with long‐term stays in nursing homes from 2015 to 2019. For each year, we measured the proportion of residents with ADRD in nursing homes nationwide with at least one antiepileptic prescription. We also measured trends in valproic acid, gabapentin, antipsychotic, and opioid prescribing. Finally, we examined how prescribing rates differed based on whether residents with ADRD had disruptive behaviors or reported pain. Results: Our study sample includes 973,074 persons living with ADRD who had a long‐term stay in a nursing home, which was defined as at least 3 months. The proportion of residents with ADRD with at least one antiepileptic prescription increased from 29.5% in 2015 to 31.3% in 2019, which was driven by increases in the rate of valproic acid and gabapentin prescribing. Conversely, antipsychotic prescribing rates declined from 32.1% to 27.9% and opioid prescribing rates declined from 39.8% to 31.7%. The risk of valproic acid prescribing was 10.9 percentage points higher among residents with ADRD with disruptive behaviors, while the risk of being prescribed gabapentin was 13.9 percentage points higher among residents with ADRD reporting pain. Conclusions: Antiepileptic prescribing among nursing home residents with ADRD is increasing, while antipsychotic and opioid prescribing is declining. Examining antiepileptic prescribing to residents with ADRD who had disruptive behaviors and/or reported pain suggests that two of the most common antiepileptics, valproic acid and gabapentin, are being used in clinically distinct ways. Antiepileptic prescribing of questionable risk–benefit for dementia care warrants further scrutiny. See related editorial by Carnahan et al. in this issue. [ABSTRACT FROM AUTHOR]

Background: Assisted living (AL) is the largest residential long‐term care provider in the United States, including for persons with Alzheimer's disease and related dementias. Despite recognizing the challenge of infection control for persons with dementia, this study of 119 AL communities is the first to describe dementia‐relevant COVID‐19 infection control across different types of AL communities, and to discuss implications for the future. Methods: From a parent study sampling frame of 244 AL communities across seven states, 119 administrators provided data about COVID‐19 infection control practices and resident behaviors. Data were collected from July 2020 through September 2021. Communities were differentiated based on the presence of beds/units dedicated for persons living with dementia, as being either dementia‐specific, mixed, or integrated. Data obtained from administrators related to feasibility of implementing seven infection control practices, and the extent to which residents themselves practiced infection prevention. Analyses compared practices across the three community types. Results: Less than half of administrators found it feasible to close indoor common areas, all community types reported a challenge organizing group activities for safe distancing, and more than half of residents with dementia did not wear a face covering or maintain physical distance from other residents when indicated. Dementia‐specific AL communities were generally the most challenged with infection control during COVID‐19. Conclusion: All AL community types experienced infection control challenges, more so in dementia‐specific communities (which generally provide care to persons with more advanced dementia and have fewer private beds). Results indicate a need to bolster infection prevention capacity when caring for this especially vulnerable population, and have implications for care in nursing homes as well. [ABSTRACT FROM AUTHOR]

Background: People with dementia (PWD) take medications that may be unnecessary or harmful. This problem can be addressed through deprescribing, but it is unclear if PWD would be willing to engage in deprescribing with their providers. Our goal was to investigate attitudes toward deprescribing among PWD. Methods: This was a cross‐sectional study of 422 PWD aged ≥65 years who completed the medications attitudes module of the National Health and Aging Trends Study (NHATS) in 2016. Proxies provided responses when a participant was unable to respond due to health or cognitive problems. Attitudinal outcomes comprised responses to two statements from the patients' attitudes toward deprescribing questionnaire and its revised version (representing belief about the necessity of one's medications and willingness to deprescribe); another elicited the maximum number of pills that a respondent would be comfortable taking. Results: The weighted sample represented over 1.8 million PWD; 39% were 75 to 84 years old and 38% were 85 years or older, 60% were female, and 55% reported six or more regular medications. Proxies provided responses for 26% of PWD. Overall, 22% believed that they may be taking one or more medicines that they no longer needed, 87% were willing to stop one or more of their medications, and 50% were uncomfortable taking five or more medications. Attitudinal outcomes were similar across sociodemographic and clinical factors. PWD taking ≥6 medications were more likely to endorse a belief that at least one medication was no longer necessary compared to those taking <6 (adjusted probability 29% [95% confidence interval (CI), 22%–38%] vs. 13% [95% CI, 8%–20%]; p = 0.004); the same applied for willingness to deprescribe (92% [95% CI, 87%–95%] vs. 83% [95% CI, 76%–89%]; p = 0.04). Conclusions: A majority of PWD are willing to deprescribe, representing an opportunity to improve quality of life for this vulnerable population. [ABSTRACT FROM AUTHOR]

Background: No prior studies have examined the effects of home‐based primary care (HBPC) in persons living with dementia (PLWD), within an ecosystem of serious illness care in an integrated healthcare system. Our objectives were to compare the characteristics of PLWD receiving HBPC and their hospital utilization and end‐of‐life care, with those of a matched comparison group, and to understand the experiences of family caregivers of PLWD receiving HBPC. Methods: This mixed‐methods study used a retrospective observational cohort design with PLWD receiving HBPC (n = 287) from 2015 to 2020 and a strata‐matched comparison group (n = 861), and qualitative phone interviews with 16 HBPC family caregivers in 2020. Inverse probability of treatment weighting propensity score‐adjusted models were used to compare time‐to‐first hospital‐based utilization and, for decedents, home palliative and hospice care and place of death. Care experience was captured through caregiver interviews. Results: Patients receiving HBPC had a similar risk of hospital utilization [adjusted hazard ratio, 1.06 (95% CI: 0.89–1.26), p = 0.51] as a matched non‐HBPC comparison group after a median follow‐up of 199 days. However, HBPC decedents (n = 159) were more likely to receive home palliative care or hospice [rate ratio, RR: 1.23 (95% CI: 1.07–1.42), p < 0.01] and to die at home [RR: 1.66 (95% CI: 1.35–2.05), p < 0.001] than were non‐HBPC decedents (n = 423). Caregivers reported that HBPC provided coordinated, continuous, and convenient care that was aligned with families' priorities and goals; however, some expressed unmet needs, especially for help paying for personal care and medical supplies/equipment, and a desire for clearer communication about program operations and more quality oversight for contract services. Conclusions: Although HBPC for PLWD was associated with a similar risk of hospital utilization compared to a matched non‐HBPC comparison group, HBPC resulted in more patient‐centered end‐of‐life care for decedents. Prospective studies of HBPC that further elicit and address unmet needs are warranted. [ABSTRACT FROM AUTHOR]

Background: Certain racial/ethnic minority groups have a higher risk of developing dementia, yet studies have demonstrated that they often have limited knowledge and understanding of this disease. An increasing number of educational and advocacy programs have been developed to promote dementia knowledge. We aimed at assessing current evidence and quality regarding educational interventions for promoting dementia knowledge. Methods: We searched for intervention studies published in English that focused on educational interventions for promoting dementia knowledge among racial/ethnic minority groups. We identified 25 relevant studies through PubMed, PsycINFO, CINAHL, and Scopus, using tailored search terms. We screened titles and abstracts, reviewed full texts, synthesized relevant evidence, and evaluated the studies' quality based on the Mixed Methods Appraisal Tool. Relevant intervention studies took place in communities, hospitals or clinics, and schools, and online. Results: Most studies were conducted in the United States (n = 21), followed by the UK (n = 3). Over half of the studies included Asian/Pacific Islander groups (n = 14), followed by Black groups (n = 12) and Hispanic groups (n = 11). The intervention delivery mode varied across studies—from workshops hosted in a faith community to talk shows on YouTube. Target populations included middle‐aged and older adults, caregivers and family members, health students and professionals, and elementary school students. Common content included symptoms and signs of dementia, protective and risk factors, and local resources. The assessment of study outcomes varied across studies. Improvement in dementia knowledge and attitudes towards dementia was reported in many studies. Among the included studies, intervention satisfaction was high. The overall quality of the interventions was low. Conclusion: Formally evaluated educational interventions promoting dementia knowledge are at an early stage. Existing published interventions showed adequate acceptability and promise in promoting better understanding and awareness of dementia in minority groups. More well‐designed randomized controlled trials are needed. [ABSTRACT FROM AUTHOR]

Introduction: The overarching goal of research on physical settings for individuals livingwith dementia is to identify associations between designed features within the built environment and outcomes of interest. Over the past three decades numerous environmental assessment tools have been developed in several countries, responding to a changing set of care industry values that increasingly prioritize a holistic, quality-of-life-driven person-centered care (PCC) model over a biomedical approach to long-term care (LTC) provision. This article reviews the diversity, constructs, strengths, and limitations of existing environmental assessment tools and identifies gaps for future tool development. Methods:Asystematic literature search was conducted using four databases (Medline, CINAHL, PsycInfo, and Avery Index) and terms related to health-care environments and assessment tools. Results: A total of 13 environmental assessment tools for people living with dementia within shared residential settings were identified. Evaluation of the environmental assessment tools includes a synthesis of published data for each tool's reliability, validity, ease of use, interpretability, strengths and weaknesses, as well as a comparison of various tool characteristics including date of development, country of origin, applicable care setting(s), number and variety of measures and underlying constructs, format, and descriptive versus evaluative content. Discussion: While the shift to person-centered values encompasses all aspects of care and care settings, the majority of person-centered definitions exclude the important role of the designed, physical environment. However, this review of environmental assessment tools clearly demonstrates that newer tools are embracing the full array of PCC values. In the United States, this is shown in the shift from tools designed to assess segregated dementia care settings to tools that integrate the needs and preferences both of individuals livingwith and without dementia. Next-generation tools need to specifically address the household model of design. [ABSTRACT FROM AUTHOR]

Background: Approximately one third of adults in adult day services (ADS) centers have Alzheimer's disease (AD) and AD-related dementias (ADRD). Understanding of the impact and effectiveness of ADS on persons living with dementia (PLWD) is limited by a lack of patient and caregiver relevant outcomes (PCRO) data. We identified PCROs collected at ADS sites in states that mandate serial data collection and examined the degree to which these data align with established Dementia Care Practice Recommendations (DCPR) and PCROs used in other areas of long-term care. Methods: We conducted an item analysis of regulatory forms used by ADS. Consistent with the methodology used by the Imbedded Pragmatic AD/ADRD Clinical Trials (IMPACT) Collaboratory for PCROs collected in other long-term care settings, we created amatrix informed byDCPR. We matched each item in regulatory forms reflecting a PCRO to one of the seven DCPR domains as well as to the 53 PCROs from other long-term care sectors. Results: Ten states routinely collect outcome data in ADS. Among these, 80% assess cognitive function. All 10 states capture PLWD's ability to complete activities of daily living. Presence and frequency of behavioral symptoms were collected by 80% of states. Very few or, in some cases, none of the 10 states, collected PCROs related to care planning and coordination, education, social support, and/or family caregiver burden and support. Discussion: Lack of standardized collection of PCROs hampers researchers' understanding of ADS. The vastmajority of PCROs collected center on participants' physical health; conversely, data on socialization, social support, and caregiver well-being, which are purportedly the most impactful services offered by ADS centers, are rarely collected. ADS would be well served to focus on these outcome domains as the resulting data could paint a more complete picture of the holistic impact of ADS on PLWD and their caregivers. [ABSTRACT FROM AUTHOR]

Objectives: Although there are disparities in both risk of developing dementia and accessibility of dementia services for certain minority ethnic groups in the United States and United Kingdom, disparities in survival after a dementia diagnosis are less well‐studied. Our objective was to systematically review the literature to investigate racial/ethnic differences in survival and mortality in dementia. Methods: We searched Embase, Ovid MEDLINE, Global Health and PsycINFO from inception to November 2018 for studies comparing survival or mortality over time in at least two race/ethnicity groups. Studies from any country were included but analysed separately. We used narrative synthesis and random‐effects meta‐analysis to synthesise findings. The Newcastle–Ottawa Scale was used to assess quality and risk of bias in individual studies. Results: We identified 22 articles, most from the United States (n = 17), as well as the United Kingdom (n = 3) and the Netherlands (n = 1). In a meta‐analysis of US studies, hazard of mortality was lower in Black/African American groups (Pooled Hazard Ratio = 0.86, 95% CI = 0.82–0.91, I2 = 17%, from four studies) and Hispanic/Latino groups (Pooled HR = 0.65, 95% CI = 0.50–0.84, I2 = 86%, from four studies) versus comparison groups. However, study quality was mixed, and in particular, quality of reporting of race/ethnicity was inconsistent. Conclusion: Literature indicates that Black/African American and Hispanic/Latino groups may experience lower mortality in dementia versus comparison groups in the United States, but further research, using clearer and more and consistent reporting of race/ethnicity, is necessary to understand what drives these patterns and their implications for policy and practice. Key points: Despite evidence that some minority race/ethnicity groups are at higher risk of developing dementia and face barriers to accessing care, racial/ethnic differences in survival following a dementia diagnosis are not widely studied, particularly outside the United StatesIn the United States, Black/African American and Hispanic/Latino groups may have lower hazard of dying after dementia diagnosis versus comparison groups, similar to survival patterns in populations without dementiaHowever, studies do not always clearly describe how race/ethnicity is defined or ascertained, affecting interpretability of resultsFuture research should consider mechanisms driving survival differences and implications of longer survival, including financial and caregiving impacts on families [ABSTRACT FROM AUTHOR]

Background/objectives: In older persons with dementia (PWD), extensive medication use is often unnecessary, discordant with goals of care, and possibly harmful. The objective of this study was to determine the prevalence and medication constituents of polypharmacy among older PWD attending outpatient visits in the United States. Design Cross‐sectional analysis. Setting and participants: PWD and persons without dementia (PWOD) aged ≥65 years attending outpatient visits recorded in the nationally representative National Ambulatory Medical Care Survey (NAMCS), 2014–2016. Measurements PWD were identified as those with a diagnosis of dementia on the NAMCS encounter form and/or those receiving an anti‐dementia medication. Visits with PWD and PWOD were compared in terms of sociodemographic, practice/physician factors, comorbidities, and prescribing outcomes. Regression analyses examined the effect of dementia diagnosis on contributions by clinically relevant medication categories to polypharmacy (defined as being prescribed ≥5 prescription and/or nonprescription medications). Results: The unweighted sample involved 918 visits for PWD and 26,543 visits for PWOD, representing 29.0 and 780 million outpatient visits. PWD had a median age of 81 and on average had 2.8 comorbidities other than dementia; 63% were female. The median number of medications in PWD was eight compared with three in PWOD (p < 0.001). After adjustment, PWD had significantly higher odds of being prescribed ≥5 medications (AOR 3.0; 95% CI: 2.1–4.3) or ≥10 medications (AOR 2.8; 95% CI: 2.0–4.2) compared with PWOD. The largest sources of medications among PWD were cardiovascular and central nervous system medications; usage from other categories was generally elevated in PWD compared with PWOD. PWD had higher odds of receiving at least one highly sedating or anticholinergic medication (AOR 2.5; 95% CI: 1.6–3.9). Conclusion: In a representative sample of outpatient visits, polypharmacy was extremely common among PWD, driven by a wide array of medication categories. Addressing polypharmacy in PWD will require cross‐cutting and multidisciplinary approaches. [ABSTRACT FROM AUTHOR]

Background/Objectives: No data exist regarding the validity of International Classification of Disease (ICD)‐10 dementia diagnoses against a clinician‐adjudicated reference standard within Medicare claims data. We examined the accuracy of claims‐based diagnoses with respect to expert clinician adjudication using a novel database with individual‐level linkages between electronic health record (EHR) and claims. Design: In this retrospective observational study, two neurologists and two psychiatrists performed a standardized review of patients' medical records from January 2016 to December 2018 and adjudicated dementia status. We measured the accuracy of three claims‐based definitions of dementia against the reference standard. Setting: Mass‐General‐Brigham Healthcare (MGB), Massachusetts, USA. Participants: From an eligible population of 40,690 fee‐for‐service (FFS) Medicare beneficiaries, aged 65 years and older, within the MGB Accountable Care Organization (ACO), we generated a random sample of 1002 patients, stratified by the pretest likelihood of dementia using administrative surrogates. Intervention: None. Measurements: We evaluated the accuracy (area under receiver operating curve [AUROC]) and calibration (calibration‐in‐the‐large [CITL] and calibration slope) of three ICD‐10 claims‐based definitions of dementia against clinician‐adjudicated standards. We applied inverse probability weighting to reconstruct the eligible population and reported the mean and 95% confidence interval (95% CI) for all performance characteristics, using 10‐fold cross‐validation (CV). Results: Beneficiaries had an average age of 75.3 years and were predominately female (59%) and non‐Hispanic whites (93%). The adjudicated prevalence of dementia in the eligible population was 7%. The best‐performing definition demonstrated excellent accuracy (CV‐AUC 0.94; 95% CI 0.92–0.96) and was well‐calibrated to the reference standard of clinician‐adjudicated dementia (CV‐CITL <0.001, CV‐slope 0.97). Conclusion: This study is the first to validate ICD‐10 diagnostic codes against a robust and replicable approach to dementia ascertainment, using a real‐world clinical reference standard. The best performing definition includes diagnostic codes with strong face validity and outperforms an updated version of a previously validated ICD‐9 definition of dementia. [ABSTRACT FROM AUTHOR]

Background/Objectives: There is increasing recognition that place of death is an important component of quality of end‐of‐life care (EOLC) and quality of death. This study examined where older persons with and without cognitive impairment die in the United States, what factors contribute to place of death, and whether place of death influences satisfaction with EOLC. Design Cross‐sectional secondary data analysis. Setting: In‐person interviews with community‐dwelling proxy respondents. Participants: Data were collected from 1,500 proxies for deceased participants in the National Health and Aging Trends Study (NHATS), a nationally‐representative sample of community‐dwelling Medicare beneficiaries aged 65 and older. Measurements Study variables were obtained from the NHATS "last month of life" interview data. Survey weights were applied to all analyses. Results: Persons with cognitive impairment (CI) most often died at home, while cognitively healthy persons (CHP) were equally likely to die at home or in a hospital. Persons with CI who utilized the Medicare Hospice Benefit were 14.5 times more likely to die at home than in a hospital, and 3.4 times more likely to die at home than a nursing home. CHP who use this benefit were over six times more likely to die at home than in a hospital, and more than twice as likely to die at home than a nursing home. Place of death for CHP was also associated with age and race. Proxies of persons with CI who died at home rated EOLC as more favorable, while proxies of CHP rated in‐home and hospital care equally. Conclusion: Findings add to the scant literature identifying factors associated with place of death for older adults with and without CI and results suggest that place of death is a quality of care indicator for these populations. These findings may inform EOLC planning and policy‐making and facilitate greater well‐being at end‐of‐life. [ABSTRACT FROM AUTHOR]

Introduction: Understanding costs of care for people dying with dementia is essential to guide service development, but information has not been systematically reviewed. We aimed to understand (1) which cost components have been measured in studies reporting the costs of care in people with dementia approaching the end of life, (2) what the costs are and how they change closer to death, and (3) which factors are associated with these costs. Methods: We searched the electronic databases CINAHL, Medline, Cochrane, Web of Science, EconLit, and Embase and reference lists of included studies. We included any type of study published between 1999 and 2019, in any language, reporting primary data on costs of health care in individuals with dementia approaching the end of life. Two independent reviewers screened all full-text articles. We used the Evers’ Consensus on Health Economic Criteria checklist to appraise the risk of bias of included studies. Results: We identified 2843 articles after removing duplicates; 19 studies fulfilled the inclusion criteria, 16 were from the United States. Only two studies measured informal costs including out-of-pocket expenses and informal caregiving. The monthly total direct cost of care rose toward death, from $1787 to $2999 USD in the last 12 months, to $4570 to $11921 USD in the last month of life. Female sex, Black ethnicity, higher educational background, more comorbidities, and greater cognitive impairment were associated with higher costs. Discussion: Costs of dementia care rise closer to death. Informal costs of care are high but infrequently included in analyses. Research exploring the costs of care for people with dementia by proximity to death, including informal care costs and from outside the United States, is urgently needed. Introduction: Understanding costs of care for people dying with dementia is essential to guide service development, but information has not been systematically reviewed. We aimed to understand (1) which cost components have been measured in studies reporting the costs of care in people with dementia approaching the end of life, (2) what the costs are and how they change closer to death, and (3) which factors are associated with these costs. Methods: We searched the electronic databases CINAHL, Medline, Cochrane, Web of Science, EconLit, and Embase and reference lists of included studies. We included any type of study published between 1999 and 2019, in any language, reporting primary data on costs of health care in individuals with dementia approaching the end of life. Two independent reviewers screened all full-text articles. We used the Evers’ Consensus on Health Economic Criteria checklist to appraise the risk of bias of included studies. Results: We identified 2843 articles after removing duplicates; 19 studies fulfilled the inclusion criteria, 16 were from the United States. Only two studies measured informal costs including out-of-pocket expenses and informal caregiving. The monthly total direct cost of care rose toward death, from $1787 to $2999 USD in the last 12 months, to $4570 to $11921 USD in the last month of life. Female sex, Black ethnicity, higher educational background, more comorbidities, and greater cognitive impairment were associated with higher costs. Discussion: Costs of dementia care rise closer to death. Informal costs of care are high but infrequently included in analyses. Research exploring the costs of care for people with dementia by proximity to death, including informal care costs and from outside the United States, is urgently needed. [ABSTRACT FROM AUTHOR]

Purpose: Persistent vocalisations are commonly exhibited by persons with dementia and are often characterised as agitation or aggression. There has been little focus on persistent vocalisations independent from other behavioural and psychological symptoms of dementia making it difficult to differentiate information about the context that surrounds the person with dementia, including the circumstances and events that precede and accompany the expression. Therefore, the aim of this study was to describe the context surrounding persistent vocalisations expressed by older adults residing in nursing homes (NH) with advanced dementia. Design and Methods: The need‐driven dementia‐compromised behaviour model informed this qualitative descriptive study. This naturalistic qualitative observational study involved direct observations of nine older adults diagnosed with dementia residing in four NHs and included informal interviews with formal caregivers. Field notes were taken and analysed using conventional content analysis. Results: Variability of exhibited persistent vocalisations was both observed by the investigator and explained by NH staff. Two themes emerged from the field notes; Routine of Staying in Room was identified for participants considered 'disruptive' to others, and Providing Care Without Communicating triggered persistent vocalisations. Implications: The findings provide insight into the lack of therapeutic interactions between NH staff and persons with advanced dementia and persistent vocalisations residing in NHs. Ongoing, mandatory, evidence‐based training on person‐centred interventions and dementia care communication for all NH staff globally could have a significant impact on the delivery of holistic quality care for persons with dementia and persistent vocalisations. [ABSTRACT FROM AUTHOR]

Introduction: Dementia in adults with Down syndrome causes a progressive decline in daily occupations impacting both persons with Down syndrome and their informal caregivers. This study aimed to explore the scope of occupational therapy practice for adults with both Down syndrome and dementia and their informal caregivers living in their homes. Methods: A survey was conducted with occupational therapists having clinical experience in providing interventions for adults with Down syndrome. A web‐based survey was developed to explore occupational therapy practice for this group of people with Down syndrome and their informal caregivers. Responses to closed‐ended questions were analysed descriptively, and inductive content analysis was used for open‐ended questions. Results: Forty‐three occupational therapists from Australia, Canada, United Kingdom and the United States of America participated in the survey. Two‐thirds were from the United Kingdom, most of whom were employed in the public sector and had at least 10 years of clinical experience. Over 90% of respondents received one or more referrals in a typical month for adults with Down syndrome having dementia, 68% of which were for a decline in activities of daily living. Home environment and activities of daily living were frequently assessed areas, and the commonest interventions were compensatory strategies and environmental modifications. Only half the respondents provided interventions for informal caregivers. Risk and safety and manual handling were frequently addressed domains for informal caregivers. Collaboration and developing clinical expertise were the two key perceived enablers for providing effective occupational therapy services. Fragmentation of services and a lack of client‐centred care were the common perceived barriers. Conclusion: Occupational therapists often address decline in activities of daily living for individuals with both Down syndrome and dementia. To support participation in meaningful occupations for these people and support the needs of their informal caregivers, it is essential that services are offered in a collaborative approach. [ABSTRACT FROM AUTHOR]

With the increase in our older adult population, there is a need for dementia training for informal and formal dementia caregivers. The objective of this scoping study is to assess dementia knowledge instruments utilized in educational programs and interventions intended for formal and informal dementia caregivers. Scoping review methodology was used to search PubMed, PsycInfo, CINAHL and Web of Science with tailored database search terms. The search yielded 8101 results, with 35 studies meeting inclusion. Studies were conducted in eight countries, had varying study designs (randomized controlled trials [RCTs] = 9, non‐RCTs = 6, one‐group study design = 20) and utilized previously published (19) and author developed (16) instruments. Furthermore, the studies were internationally diverse, conducted in the United States (n = 18), Australia (n = 7), UK (n = 3), China (n = 2), Canada (n = 2), Taiwan (n = 1), Brazil (n = 1) and multi‐country (n = 1). Only two studies focused on minority populations. While author‐developed instruments may be more relevant and timesaving, studies should strive to validate instruments or use previously published instruments to help standardize findings across studies and understand better the effects of educational programs on caregiver knowledge. Geriatr Gerontol Int 2020; 20: 397–413. [ABSTRACT FROM AUTHOR]

OBJECTIVES: To evaluate how eight major medical comorbidities of dementia (arthritis, cancer, diabetes, heart disease, hypertension, lung disease, osteoporosis, and stroke) are associated with caregivers' perceptions of emotional caregiving difficulties and caregiving gains (ie, benefits or rewards from the care role). DESIGN: Nationally representative cross‐sectional surveys of community‐dwelling persons living with dementia (PLWDs) and their co‐resident family caregivers in the United States. SETTING: The 2011 National Health and Aging Trends Study and National Study of Caregiving. PARTICIPANTS: Total of 356 co‐resident family caregivers of community‐dwelling PLWDs. MEASUREMENTS: Caregivers' sociodemographic and health characteristics, caregiving stressors, emotional caregiving difficulties, caregiving gains, and chronic health conditions of PLWDs. RESULTS: Caregivers most commonly cared for a PLWD with arthritis (65.5%), followed by hypertension (64.9%), diabetes (30.1%), stroke (28.8%), osteoporosis (27.1%), heart disease (23.3%), cancer (21.5%), and lung disease (17.2%). Logistic regressions revealed that caregivers were 2.63 and 2.32 times more likely to report higher than median emotional caregiving difficulties when PLWDs had diagnoses of diabetes and osteoporosis, respectively, controlling for caregiver sex, relationship to the PLWD (spouse vs non‐spouse), educational attainment, self‐rated health, and assistance with activities of daily living and medical care activities. Caregivers were also 2.10 times more likely to report lower than median caregiving gains when PLWDs had a diagnosis of osteoporosis. CONCLUSION: Comorbid health conditions among PLWDs have distinct implications for caregiving outcomes. Clinical care and interventions to improve the well‐being of both care dyad members should support caregivers in managing medical comorbidities of dementia. J Am Geriatr Soc 68:609–613, 2020 [ABSTRACT FROM AUTHOR]

Introduction: Tom Kitwood's theoretical framework of person‐centred care is extensively and internationally referred to in healthcare services. However, despite the broad use of Kitwood's approach in clinical practice, the research examining experiences with the approach has not been mapped. Aim: To map the available literature on current empirical experiences in clinical practice of Kitwood's approach to person‐centred care for people with dementia, living in institutional settings in primary health care. Methods: A total of 154 studies concerning the experiences of people with dementia and their formal caregivers' use of Kitwood's framework of person‐centred care for residents living in institutional settings in primary health care were compiled from scientific databases. All three authors engaged in a systematic selection process, leading to nineteen articles being included in the review. Results: The results showed an overall tendency towards positive experiences gained from applying person‐centred approaches in clinical practice influenced by Kitwood's theoretical framework. Through the synthesis of data from the selected studies, six categories related to our research aim were identified 'Theoretical evaluation of Tom Kitwood's model of care', 'Models and frameworks', 'Interventions', 'Communication', 'Dementia Care Mapping' and 'Environment'. Conclusion: The present review included nineteen studies published from 1998 to 2016 and consisted mainly of peer‐reviewed scientific articles, followed by dissertations, conference posters and nonpeer‐reviewed articles. All studies were undertaken in Western countries. The vast majority of the studies considered Kitwood's theoretical framework to be beneficial and useful in practice. [ABSTRACT FROM AUTHOR]

OBJECTIVES: Little population‐level evidence exists to guide the development of interventions for people with dementia in non–nursing home settings. We hypothesized people living at home with moderately severe dementia would differ in social, functional, and medical characteristics from those in either residential care or nursing home settings. DESIGN: Retrospective cohort study using pooled data from the National Health and Aging Trends Study, an annual survey of a nationally representative sample of Medicare beneficiaries. SETTING: US national sample. PARTICIPANTS: Respondents newly meeting criteria for incident moderately severe dementia, defined as probable dementia with functional impairment: 728 older adults met our definition between 2012 and 2016. MEASUREMENTS: Social characteristics examined included age, sex, race/ethnicity, country of origin, income, educational attainment, partnership status, and household size. Functional characteristics included help with daily activities, falls, mobility device use, and limitation to home or bed. Medical characteristics included comorbid conditions, self‐rated health, hospital stay, symptoms, and dementia behaviors. RESULTS: Extrapolated to the population, an estimated 3.3 million older adults developed incident moderately severe dementia between 2012 and 2016. Within this cohort, 64% received care at home, 19% in residential care, and 17% in a nursing facility. social, functional, and medical characteristics differed across care settings. Older adults living at home were 2 to 5 times more likely to be members of disadvantaged populations and had more medical needs: 71% reported bothersome pain compared with 60% in residential care or 59% in nursing homes. CONCLUSION: Over a 5‐year period, 2.1 million people lived at home with incident moderately severe dementia. People living at home had a higher prevalence of demographic characteristics associated with systematic patterns of disadvantage, more social support, less functional impairment, worse health, and more symptoms compared with people living in residential care or nursing facilities. This novel study provides insight into setting‐specific differences among people with dementia. J Am Geriatr Soc 67:1907–1912, 2019 See related editorial by Joanne Lynn. [ABSTRACT FROM AUTHOR]

Objectives: Systematic review and meta-analysis to determine the effectiveness of interventions in reducing depressive symptoms in ethnic minority carers of people with dementia.Methods: We systematically searched EMBASE, CINAHL, MEDLINE, PsycINFO, PsycARTICLES, Applied Social Sciences Index and Abstracts (ASSIA), The Cochrane Central Register of Controlled Trials (CENTRAL), and Sociological Abstracts and Social Policy and Practices databases from 1990 to 2015, supplemented by a grey literature search, hand searches of bibliographies, and contacting authors. Study quality was assessed independently by two researchers using The Effective Public Health Practice Project Quality Assessment Tool, with an inter-rater reliability of Cohen's kappa of 0.72 (95% CI, 0.42-1.01). Narrative synthesis and meta-analysis were used to assess intervention effectiveness. Meta-regression was used to assess whether factors such as intervention type, peer support, and ethnicity accounted for hetereogeneity.Results: Thirteen studies were eligible for inclusion, with 1076 participants in control groups and 980 participants in intervention groups; 12 studies provided estimates for meta-analysis. All studies were from the United States. Interventions were associated with an overall mean reduction in depression in caregivers (SMD -0.17 (95% CI, -0.29 to -0.05; P = 0.005). Meta-regression did not indicate any potential sources of heterogeneity, although narrative synthesis suggested that interventions developed with the target ethnic minority group's preferred mode of engagement in mind alongside cultural adaptations may have enhanced effectiveness.Conclusions: Psychosocial interventions for depression in ethnic minority carers of people with dementia are effective and could be enhanced through cultural adaptations. High-quality studies targeting minority ethnic groups outside of the United States are needed. [ABSTRACT FROM AUTHOR]

OBJECTIVES To examine factors associated with caregiver burden from a multifactorial perspective by examining caregiver and care recipient characteristics and a full range of caregiving tasks. DESIGN Nationally representative surveys of community‐dwelling older adults and their family caregivers residing in the United States. SETTING 2011 National Health and Aging Trends Study and National Study of Caregiving. PARTICIPANTS Community‐dwelling older adults and their family caregivers. MEASUREMENTS Caregiver burden, comprising emotional, physical, and financial difficulties associated with caregiving. RESULTS: An estimated 14.9 million caregivers assisted 7.6 million care recipients. More than half of caregivers reported burden related to caregiving. In a multivariable regression model, caregivers who assisted with more activities of daily living and instrumental activities of daily living, health management tasks, and health system logistics were more likely to experience burden, as were female caregivers, adult child caregivers, caregivers in poor health, caregivers with anxiety symptoms, and those using respite care. Dementia was the only care recipient characteristic associated with burden. CONCLUSION: Caregiver characteristics and provision of caregiving tasks determine caregiver burden more than care recipient characteristics. Absence of an association between type of a care recipient's chronic conditions and burden, except for dementia, suggests that the tasks that caregivers who assist older adults with a variety of health conditions undertake shape the experience of caregiving. J Am Geriatr Soc 67:277–283, 2019. [ABSTRACT FROM AUTHOR]

Objectives: To examine how misidentification of dementia affects estimation of Medicare costs in a largely minority cohort of participants for whom accurate in‐person diagnoses are available. Design: Prospective cohort study. Setting: Washington Heights‐Inwood Columbia Aging Project, a multiethnic, population‐based, prospective study of cognitive aging of Medicare beneficiaries aged 65 and older. Participants: Individuals clinically diagnosed with dementia (n=495) and individuals clinically diagnosed without dementia (n=1,701). Measurements: Medicare claims‐identified dementia was defined according to the presence of any International Classification of Diseases, Ninth Revision, Clinical Modification diagnosis codes for Alzheimer's disease and related dementias in all available claims during the study period. Participant characteristics associated with claims misidentification of dementia were estimated using logistic regression. Effects of dementia misidentification on Medicare expenditures were estimated using generalized linear models. Results: Medicare claims correctly identified 250 of the 495 (51%) dementia cases and 1,565 of the 1,701 (92%) nondementia cases. Sensitivity of claims‐identified dementia was 0.51, and specificity was 0.92. Average annual Medicare expenditures were $14,721 for a beneficiary with a clinical diagnosis of dementia, and $18,208 for a beneficiary with claim‐identified dementia, suggesting an overestimation of $3,487 per person per year when Medicare claims were used to identify dementia. Total annual expenditures for all beneficiaries with claims‐identified dementia were $258,707 lower than that for all those who were clinically diagnosed, suggesting an overall underestimation of total Medicare expenditures if Medicare claims were used to identify dementia. Different types of misidentification have different effects on dementia‐related cost estimates. Average annual expenditures per person were highest for false positives. Conclusion: Misidentification of dementia in Medicare claims is common. Using claims to identify dementia may result in significantly biased estimates of the cost of dementia. J Am Geriatr Soc 67:269–276, 2019. [ABSTRACT FROM AUTHOR]

Objective: To compare the quality of care following admission to a nursing home (NH) with and without a dementia special care unit (SCU) for residents with dementia.Data Sources/study Setting: National resident-level minimum dataset assessments (MDS) 2005-2010 merged with Medicare claims and provider-level data from the Online Survey, Certification, and Reporting database.Study Design: We employ an instrumental variable approach to address the endogeneity of selection into an SCU facility controlling for a range of individual-level covariates. We use "differential distance" to a nursing home with and without an SCU as our instrument.Data Collection/extraction Methods: Minimum dataset assessments performed at NH admission and every quarter thereafter.Principal Findings: Admission to a facility with an SCU led to a reduction in inappropriate antipsychotics (-9.7 percent), physical restraints (-9.6 percent), pressure ulcers (-3.3 percent), feeding tubes (-8.3 percent), and hospitalizations (-14.7 percent). We found no impact on the use of indwelling urinary catheters. Results held in sensitivity analyses that accounted for the share of SCU beds and the facilities' overall quality.Conclusions: Facilities with an SCU provide better quality of care as measured by several validated quality indicators. Given the aging population, policies to promote the expansion and use of dementia SCUs may be warranted. [ABSTRACT FROM AUTHOR]

Objectives: To examine the effect of the Medicare Annual Wellness Visit (AWV) on the detection of cognitive impairment and on follow‐up cognitive care for older adults. Design: Retrospective matched‐cohort study. Setting: United States. Participants: A 5% random sample of fee‐for‐service Medicare beneficiaries continuously enrolled for 12 months before and after an index ambulatory visit occurring from 2011 to 2013 with no claims evidence of cognitive impairment before index. Measurements: Outcomes include 12‐month post‐index visit claims‐based measurements of cognitive impairment, including new Alzheimer's disease and related dementia (ADRD) diagnoses; medications for ADRD; and cognitive care‐related diagnostic examination such as neurobehavioral testing, brain imaging, and blood tests for thyroid‐stimulating hormone (TSH), serum B12, folate, and syphilis. We also measured changes in burden of anticholinergic medication. Results: There were no clinically relevant differences between the AWV and control groups in the rates of incident ADRD diagnoses (6.16% vs 6.86%, p<.001) and initiation of ADRD medications (1.00% vs 1.08%, p=.15), although there were differences favoring the AWV group in rates of TSH (39.80% vs 28.36%, p<.001), B12 (9.41% vs 6.97%, p<.001), folate (4.76% vs 3.72%, p<.001), and neurobehavioral (0.75% vs 0.55%, p<.001) testing. Conclusions: Although the AWV is correlated with an increase in some measures of cognitive care, such as laboratory testing for reversible causes of cognitive impairment, it does not appear to substantially increase recognition of undetected ADRD. [ABSTRACT FROM AUTHOR]

The Health and Aging Policy Fellows (HAPF) Program has, since its inception in 2008, provided health policy training and mentorship for 113 gerontological professionals across a wide range of disciplines and stages of careers. The fellows' shared passion is the effective engagement of policy levers to improve the lives of older adults. This article briefly describes the HAPF Program and provides a sample of policies with which fellows have been engaged related to dementia and late‐life mental health. Approximately 20% of the fellows have specifically addressed one of these areas during their fellowship year. This would be expected, given that 14% of older adults aged 71 and older have a diagnosis of dementia, and although new mental health diagnoses decline as adults age, mental health conditions remain prevalent. Thus, we conclude by describing opportunities for future advocacy and policy efforts in dementia and mental health in the areas of funding, translating science to practice, interprofessional education and innovative models of care for persons with these conditions. [ABSTRACT FROM AUTHOR]

Objectives To determine whether elderly veterans with posttraumatic stress disorder ( PTSD) and dementia are more likely to be prescribed second-generation antipsychotics ( SGAs) than those with PTSD alone. Design National serial cross-sectional study. Setting Veterans Health Affairs inpatient and outpatient settings. Participants Veterans aged 65 and older with PTSD (excluding schizophrenia or bipolar disorder) with or without concomitant dementia who received care from the Veterans Health Administration between 2003 and 2010 were identified using International Classification of Diseases, Ninth Revision, codes (N = 93,068; 11.1% with dementia). Measurements Trends in SGA prescribing and odds of being prescribed an SGA were determined using a multivariable logistic regression model adjusted for clinical, sociodemographic, and geographic covariates. Results Between 2004 and 2009, SGA prescribing declined annually from 7.0% to 5.1% of elderly veterans with PTSD without dementia and 13.2% to 8.9% in those with dementia; findings over time consistently indicated that veterans with PTSD and dementia had at least twice the odds of being prescribed an SGA as those without PTSD (odds ratios 2.03 (95% confidence interval ( CI) = 1.82-2.26) to 2.33 (95% CI = 2.10-2.58). Conclusion Although the prescribing of SGAs to elderly veterans with PTSD has decreased, prescribing an SGA to those with dementia remained consistently higher than for those with PTSD alone and is problematic given the high prevalence of medical comorbidities in this aging population coupled with the lack of compelling evidence for effectiveness of SGAs in individuals with dementia. [ABSTRACT FROM AUTHOR]

Objectives To estimate the number of caregivers providing assistance to community-dwelling older persons with and without dementia and with or without substantial disability; to describe the characteristics of caregivers and care recipients in these groups; to characterize the health-related tasks that caregivers provide; and to estimate associations between the numbers of tasks and caregiver burden. Design Nationally representative surveys of caregivers and older adults in the United States. Setting 2011 National Health and Aging Trends Study and National Study of Caregiving. Participants Community-dwelling older adults and their family caregivers, who were selected on the basis of having assisted with mobility, self-care, household activities, transportation, or medical tasks. Measurements Caregiver burden (emotional, physical, financial difficulties) and restrictions on social participation. Results Although much larger proportions of older adults with dementia and disability (98.4%, n = 1.0 million) and dementia but not disability (95.5%, n = 1.3 million) received caregiving assistance, the largest absolute number of individuals receiving assistance were older adults without dementia or disability (4.0 million). Within each caregiver group, caregivers provided assistance with at least one task across domains of activity of daily living and instrumental activity of daily living-related assistance (>98%), health systems logistics (>70%), and health management (>50%). There was a significant linear association between number of tasks provided and risk of burden in virtually all caregiver groups and domains of assistance. Conclusion Caregivers of care recipients without dementia or disability accounted for the largest absolute number of helpers. These caregivers, similar to caregivers of care recipients with dementia or disability, delivered a broad spectrum of health-related tasks and experienced caregiver burden and restrictions on social participation. Findings support the need for interventions that address the needs of caregivers who have not typically been defined as high risk. [ABSTRACT FROM AUTHOR]

The teledementia clinic is a new model of care that expands the reach of specialized geriatric and dementia care using clinical video telehealth ( CVT) to rural veterans, who frequently lack access to specialty care. The clinic is a Veterans Affairs ( VA) Geriatric Research, Education, and Clinical Center clinical demonstration project. It is located in the Pittsburgh VA Healthcare System tertiary referral hospital and serves veterans in affiliated rural community-based outpatient clinics ( CBOCs). Rural CBOC primary care providers refer clinic patients, or referral is according to previous cognitive impairment diagnosis in a VAPHS geriatric clinic. Patients undergo interprofessional dementia assessment by a geriatrician, geropsychologist, geriatric psychiatrist or neurologist, and social worker using CVT technology. Metrics for clinic evaluation included rural patients served and savings in travel time, distance, and costs. Assessments collected depended upon individual presentation and included cognitive tests, geriatric depression scales, functional assessment, and the Zarit Burden Interview. A patient satisfaction survey was created and administered. In the first year, 95 individuals were served in 156 clinic visits and 251 interprofessional provider encounters. Of patients served, 61 lived in rural ZIP codes, 72 were diagnosed with dementia, 19 were diagnosed with mild cognitive impairment, and four were found to have primarily psychiatric diagnoses rather than cognitive impairment. The average Functional Assessment Staging of Alzheimer's Disease Scale score was 4.3 ± 1.3. This clinic model demonstrates that CVT technology is a feasible means of providing interprofessional dementia evaluations and follow-up to rural presidents. [ABSTRACT FROM AUTHOR]

Objective Examine caregiver and care recipient healthcare costs associated with caregivers' participation in Resources for Enhancing Alzheimer's Caregivers Health ( REACH II or REACH VA) behavioral interventions to improve coping skills and care recipient management. Design RCT ( REACH II); propensity-score matched, retrospective cohort study ( REACH VA). Setting Five community sites ( REACH II); 24 VA facilities ( REACH VA). Participants Care recipients with Alzheimer's disease and related dementias ( ADRD) and their caregivers who participated in REACH II study (analysis sample of 110 caregivers and 197 care recipients); care recipients whose caregivers participated in REACH VA and a propensity matched control group (analysis sample of 491). Measurements Previously collected data plus Medicare expenditures ( REACH II) and VA costs plus Medicare expenditures ( REACH VA). Results There was no increase in VA or Medicare expenditures for care recipients or their caregivers who participated in either REACH intervention. For VA care recipients, REACH was associated with significantly lower total VA costs of care (33.6%). VA caregiver cost data was not available. Conclusion In previous research, both REACH II and REACH VA have been shown to provide benefit for dementia caregivers at a cost of less than $5/day; however, concerns about additional healthcare costs may have hindered REACH's widespread adoption. Neither REACH intervention was associated with additional healthcare costs for caregivers or patients; in fact, for VA patients, there were significantly lower healthcare costs. The VA costs savings may be related to the addition of a structured format for addressing the caregiver's role in managing complex ADRD care to an existing, integrated care system. These findings suggest that behavioral interventions are a viable mechanism to support burdened dementia caregivers without additional healthcare costs. [ABSTRACT FROM AUTHOR]

Background Nursing home ( NH) residents who require assistance during mealtimes are at risk for malnutrition. Supportive handfeeding is recommended, yet there is limited evidence supporting use of a specific handfeeding technique to increase meal intake. Objectives To compare efficacy of three handfeeding techniques for assisting NH residents with dementia with meals: Direct Hand ( DH), Over Hand ( OH), and Under Hand ( UH). Design A prospective pilot study using a within-subjects experimental Latin square design with randomization to one of three handfeeding technique sequences. Setting and Participants 30 residents living with advanced dementia in 11 U.S. NHs. Measurements Time required for assistance; meal intake (% eaten); and feeding behaviors, measured by the Edinburgh Feeding Evaluation in Dementia (EdFED) scale. Intervention Research Assistants provided feeding assistance for 18 video-recorded meals per resident (N = 540 meals). Residents were assisted with one designated technique for 6 consecutive meals, changing technique every 2 days. Results Mean time spent providing meal assistance did not differ significantly between techniques. Mean meal intake was greater for DH (67 ± 15.2%) and UH (65 ± 15.0%) with both significantly greater than OH (60 ± 15.1%). Feeding behaviors were more frequent with OH (8.3 ± 1.8%), relative to DH (8.0 ± 1.8) and UH (7.7 ± 1.8). Conclusion All three techniques are time neutral. UH and DH are viable options to increase meal intake among NH residents with advanced dementia and reduce feeding behaviors relative to OH feeding. [ABSTRACT FROM AUTHOR]

Objectives To describe the extent to which nursing homes engaged families in antipsychotic initiation decisions in the year before surveyor guidance revisions were implemented. Design Mixed-methods study based on semistructured interviews. Setting U.S. nursing homes (N = 20) from five CMS regions ( III, IV, VI, VIII, IX). Participants Family members of nursing home residents (N = 41). Measurements Family member responses to closed- and open-ended questions regarding involvement in resident care and antipsychotic initiation. Two researchers used a content analytical approach to code open responses to themes of family involvement in behavior management, decision-making, knowledge of risks and benefits, and informed consent. Results Fifty-four percent of family members felt highly involved in decisions about behavior management. Forty-two percent recalled being asked how to manage resident behavior without medication, and 17% recalled receipt of information about antipsychotic risks and benefits. Sixty-six percent felt highly involved in the process of initiating antipsychotic medication; 24% reported being asked for input into the antipsychotic initiation decision and knowing before the antipsychotic was started. Conclusion Under existing federal regulations but before guidance revisions were implemented in 2013, more than 40% of families reported being involved in nonpharmacological behavior management of family members, but fewer than one in four reported being involved throughout the entire antipsychotic prescribing process. Interventions that standardize family engagement and promote adherence to existing federal regulations are needed. This discussion builds on these findings to weigh the policy options of greater enforcement of existing regulations versus enactment of new legislation to address this challenging issue. [ABSTRACT FROM AUTHOR]

Objectives To evaluate frequency of use of two anti-dementia drug classes approved for treatment of symptoms, whether populations most likely to benefit are treated, and correlates of treatment initiation. Design Nationally representative cohort study. Setting Fee-for-service Medicare. Participants Elderly adults with dementia enrolled in Medicare Parts A, B, and D in 2009 (N = 433,559) and a subset with incident dementia (n = 185,449). Measurements Main outcome was any prescription fill for antidementia drugs (cholinesterase inhibitors (ChEIs) or memantine) within 1 year. Results Treatment with antidementia drugs occurred in 55.8% of all participants with dementia and 49.3% of those with incident dementia. There was no difference between ChEIs and memantine use according to dementia severity (measured as death within first year or living in residential care vs in a community setting) even though memantine is not indicated in mild disease. In incident cases, initiation of treatment was lower in residential care (relative risk (RR) = 0.82, 95% confidence interval (CI) = 0.81-0.83) and with more comorbidities (RR = 0.96, 95% CI = 0.96-0.96). Sixty percent of participants were managed in primary care alone. Seeing a neurologist (RR = 1.07, 95% CI = 1.06-1.09) or psychiatrist (RR = 1.17, 95% CI = 1.16-1.19) was associated with higher likelihood of treatment than seeing a primary care provider alone, and seeing geriatrician was associated with with lower likelihood (RR = 0.96, 95% CI = 0.93-0.99). Across the United States, the proportion of newly diagnosed individuals started on antidementia treatment varied from 32% to 66% across hospital referral regions. Conclusion Antidementia drugs are used less often in people with late disease, but there is no differentiation in medication choice. Although primary care providers most often prescribe antidementia medication without specialty support, differences in practice between specialties are evident. [ABSTRACT FROM AUTHOR]

Objectives To examine the prevalence of dementia in the absence of a reported dementia diagnosis and whether potentially unsafe activities and living conditions vary as a function of dementia diagnosis status in a nationally representative sample of older adults. Design Observational cohort study. Setting Community. Participants Medicare beneficiaries aged 65 and older enrolled in the National Health and Aging Trends Study (N = 7,609). Measurements Participants were classified into four groups based on self-report of dementia diagnosis, proxy screening interview, and cognitive testing: probable dementia with reported dementia diagnosis (n = 457), probable dementia without reported dementia diagnosis (n = 581), possible dementia (n = 996), or no dementia (n = 5,575). Potentially unsafe activities (driving, preparing hot meals, managing finances or medications, attending doctor visits alone) and living conditions (falls, living alone, and unmet needs) were examined according to dementia status subgroups in stratified analyses and multivariate models, adjusting for sociodemographic factors, medical comorbidities, and physical capacity. Results The prevalence of driving (22.9%), preparing hot meals (31.0%), managing finances (21.9%), managing medications (36.6%), and attending doctor visits alone (20.6%) was lowest in persons with probable dementia; however, but in persons with probable dementia, the covariate-adjusted rates of driving, preparing hot meals, managing finances, managing medications, and attending doctor visits alone were significantly higher in those without reported dementia diagnosis than in those with reported diagnosis (all odds ratios ≥2.00, all P < .01). Conclusion Older adults with probable dementia who are not aware of a dementia diagnosis are more likely to report engaging in potentially unsafe behaviors. Understanding the prevalence of potentially unsafe activities and living conditions can help clinicians focus safety screening and counseling in older adults with diagnosed or suspected dementia. [ABSTRACT FROM AUTHOR]

Background: Prescribing practice patterns and factors associated with treatment changes in older patients initiating antipsychotic treatment for the behavioral and psychological symptoms of dementia is not well known.Objectives: The objective of this study is to study 90-day prescribing practice patterns across the three most commonly prescribed antipsychotics.Methods: This is a retrospective study using national data from the US Department of Veterans Affairs (VA). The study included patients older than 65 years diagnosed with dementia who began outpatient treatment with an antipsychotic medication between 2005 and 2008. Patients were followed for 90 days from their antipsychotic start. The primary event of interest was changing to another psychotropic medication. Cumulative incidence of treatment change was determined with antipsychotic discontinuation and death as competing risks. Covariate-adjusted hazard ratios for treatment change were determined using competing risk regression models.Results: During the study period, 15,435 patients initiated an atypical antipsychotic; 14,791 started olanzapine, quetiapine, or risperidone. Over half (55%) of the patients discontinued index treatment within 90 days, 36% continued, 3% died while on index treatment, and 6% changed to another psychotropic medication. Compared with quetiapine, the adjusted hazard of treatment change was higher by 43% (p = 0.005) for olanzapine and by 12% (p = 0.08) for risperidone.Conclusion: The higher hazard of treatment change with olanzapine suggests patients either responded worse to or experienced more adverse events with olanzapine compared with quetiapine. [ABSTRACT FROM AUTHOR]

The quality of care of older adults in the United States has been consistently shown to be inadequate. This gap between recommended and actual care provides an opportunity to improve the value of health care for older adults. Prior work from the Assessing Care of Vulnerable Elders ( ACOVE) investigators first defined, and then sought to improve, clinical practice for common geriatric conditions. A critical component of the ACOVE intervention for practice improvement was an emphasis on the delegation of specific care processes, but the independent effect of delegation on the quality of care has not been evaluated. This study analyzed the pooled results of prior ACOVE projects from 1998 to 2010. Totaled, these studies included 4,776 individuals aged 65 and older of mixed demographic backgrounds and 16,204 ACOVE quality indicators ( QIs) for three geriatric conditions: falls, urinary incontinence, and dementia. In unadjusted analyses, QI pass probabilities were 0.36 for physician-performed tasks, 0.55 for nurse practitioner ( NP)-, physician assistant ( PA)-, and registered nurse ( RN)-performed tasks; and 0.61 for medical assistant- and licensed vocational nurse-performed tasks. In multiply adjusted models, the independent pass-probability effect of delegation to NPs, PAs, and RNs was 1.37 ( P = .05). These findings suggest that delegation of selected tasks to nonphysician healthcare providers is associated with higher quality of care for these geriatric conditions in community practices and supports the value of interdisciplinary team management for common outpatient conditions in older adults. [ABSTRACT FROM AUTHOR]

Objectives To establish the prevalence and correlates of disability during the 2 years before hip fracture. Design Data from participants who experienced hip fracture in the Health and Retirement Study ( HRS) with hip fracture identified using linked Medicare claims. Each participant was interviewed at varying time points in the 2 years before hip fracture. Disability was defined as self-report of the need for assistance in any activity of daily living (walking across the room, eating, bathing, dressing, using the toilet, transferring). Based on the timing between interview and hip fracture, prevalence of disability was calculated in the cohort as a whole over the 2 years before hip fracture and in subgroups defined according to demographic and clinical characteristics. Setting The HRS is a nationally representative longitudinal study (1992-2010). Participants HRS participants aged ≥65 with hip fracture (mean age at fracture 84, 77% female). Results The adjusted prevalence of disability was 20% (95% confidence interval ( CI) = 14-25%) 2 years before hip fracture, with little change until approximately 10 months before fracture, when it started to rise, reaching 44% (95% CI = 33-55%) in the month before hip fracture. The prevalence of disability was highest in the last month before fracture for persons aged 85 and older (53%) and for those with dementia (60%). Conclusion Care models for hip fracture need to consider not only the acute medical and surgical needs, but also the high level of need for supportive care and caregiver assistance that chronically disabled individuals require. [ABSTRACT FROM AUTHOR]

Objectives To describe transitions in care for older adults with dementia identified from a nationally representative cohort and to describe transition rates in those with more-severe levels of cognitive and functional impairment. Design Longitudinal cohort study. Setting Health and Retirement Study ( HRS). Participants HRS respondents aged 65 and older whose survey data were linked with Medicare claims from 1999 to 2008 (N = 16,186). Measurements Transitions in care between home, home with formal services, hospital, and nursing facility care; cognitive function; activities of daily living; and mortality. Results The 3,447 (21.3%) HRS subjects who were ever diagnosed with dementia experienced frequent transitions. Of subjects transitioning from a hospital stay, 52.2% returned home without home care services, and 33.8% transitioned to a nursing facility. Of subjects transitioning from a nursing facility, 59.2% transitioned to the hospital, and 25.3% returned home without services. There were 2,139 transitions to death, and 58.7% of HRS subjects with dementia died at home. Even in persons with moderate to severe dementia, multiple transitions in care were documented, including transitions from the hospital to home and back to the hospital. Conclusion In this nationally representative sample of older adults, subjects diagnosed with dementia experience frequent transitions. Persons with dementia who are cared for at home and who transition back to home often have moderate to severe impairments in function and cognition. [ABSTRACT FROM AUTHOR]

Objectives To describe the prevalence of and factors associated with drug-disease interactions (DDIs) in older nursing home residents according to the American Geriatrics Society 2012 Beers Criteria. Design Cross-sectional. Setting Fifteen Veterans Affairs Community Living Centers. Participants Individuals aged 65 and older with a diagnosis of dementia or cognitive impairment, a history of falls or hip fracture, heart failure (HF), a history of peptic ulcer disease (PUD), or Stage IV or V chronic kidney disease (CKD). Measurements Medications that could exacerbate the above conditions (DDIs). Results Three hundred sixty-one of 696 (51.9%) eligible residents had one or more DDIs. None involved residents with a history of PUD, one involved a resident with CKD, and four occurred in residents with HF. Of 540 residents with dementia or cognitive impairment, 50.7% took a drug that could exacerbate these conditions; the most commonly involved medications were antipsychotics (35.4%) and benzodiazepines (14.4%). Of 267 with a history of falls or hip fracture, 67.8% received an interacting medication, with selective serotonin reuptake inhibitors (33.1%), antipsychotics (30.7%), and anticonvulsants (25.1%) being most commonly involved. Using separate multivariable logistic regression models, factors associated with DDIs in dementia or cognitive impairment and falls or fractures included age 85 and older (adjusted odds ratio (aOR) = 0.38, 95% confidence interval (CI) = 0.24-0.60 and aOR = 0.48, 95% CI = 0.24-0.96, respectively), taking five to eight medications (aOR = 2.06, 95% CI = 1.02-4.16 and aOR = 4.76, 95% CI = 1.68-13.5, respectively), taking nine or more medications (aOR = 1.99, 95% CI = 1.03-3.85 and aOR = 3.68, 95% CI = 1.41-9.61, respectively), and being a long-stay resident (aOR = 1.80, 95% CI = 1.04-3.12 and aOR = 2.35, 95% CI = 1.12-4.91, respectively). Conclusion DDIs were common in older nursing home residents with dementia or cognitive impairment or a history of falls or fractures. [ABSTRACT FROM AUTHOR]

Objectives To describe patterns of, and factors associated with, statin use and discontinuation in nursing home ( NH) residents progressing to advanced dementia and followed for at least 90 days. Design Retrospective inception cohort using a dataset linking 2007 to 2008 Minimum Data Set ( MDS) to Medicare denominator and Part D files. Setting All NHs in five states ( Minnesota, Massachusetts, Pennsylvania, California, Florida). Participants NH residents with dementia. Measurements Residents who developed advanced dementia were observed from baseline (date of progression to very severe cognitive impairment with eating problems) and followed for at least 90 days to statin discontinuation or death. Logistic regression was used to identify baseline factors associated with statin use. Cox proportional hazard regression was used to identify factors associated with time to statin discontinuation. Results Of 10,212 residents, 16.6% (n = 1,699) used statins. Greater odds of statin use were associated with having diabetes mellitus (adjusted odds ratio ( AOR) = 1.24, 95% confidence interval ( CI) = 1.09-1.40), stroke ( AOR = 1.31, 95% CI = 1.16-1.48), and hypertension ( AOR = 1.35, 95% CI = 1.18-1.54); hospice enrollment was associated with lower odds ( AOR = 0.75, 95% CI = 0.64-0.89). In follow-up, 37.2% (n = 632) discontinued statins. Median time to discontinuation was 36 days (interquartile range 12-110 days). Shorter time to discontinuation was associated with hospitalization in past 30 days (adjusted hazard ratio ( AHR) = 1.67, 95% CI = 1.40-1.99) and more daily medications ( AHR = 1.02, 95% CI = 1.01-1.04). When statins were discontinued, 15.0% (n = 95) of residents stopped only statins, and 47.5% (n = 300) stopped at least one other medication. Conclusion Most NH residents who use statins at the time of progression to advanced dementia continue use in follow-up. [ABSTRACT FROM AUTHOR]

The World Health Organization's report, D ementia: A P ublic H ealth P riority, noted that the number of people worldwide affected by dementia is significant and will continue to increase. The report called on nations to address dementia by developing national plans and undertaking public health initiatives. Special mention was made of the situation of people with intellectual disability, some of who manifest high risk for dementias. In the United States, the National Task Group on Intellectual Disabilities and Dementia Practices (the ' NTG') was created to ensure that the needs and interests of adults with intellectual and developmental disability who are affected by Alzheimer's disease and related dementias-as well as their families and friends-are taken into account as part of general-population dementia health and public policy efforts, particularly as noted in the U. S. National Plan to Address Alzheimer's Disease. To this end, the NTG's multifaceted advocacy efforts have included (1) identifying best practices for providing care and services to affected adults with intellectual disability; (2) developing and identifying a functional workable administrative dementia early detection and screening instrument; (3) producing educational materials useful to families, adults with intellectual disability, and nongovernmental organizations; and (4) furthering public policy initiatives on dementia as they affect adults with intellectual disability. This article describes the origins of this group, its functions and accomplishments, as well its role with respect to national dementia advocacy, as a prototype for other national efforts that can be used to promote the interests of adults with intellectual disability affected by dementia and improve the quality of their lives. Suggested are means for replication of such an effort in other national environments. [ABSTRACT FROM AUTHOR]