The national public health response to Alzheimer's disease and related dementias: Origins, evolution, and recommendations to improve early detection.

Longstanding gaps in the detection of Alzheimer's disease and related dementias (ADRD) and biopsychosocial care call for public health action to improve population health. We aim to broaden the understanding of the iterative role state plans have played over the last 20 years in prioritizing improvements in the detection of ADRD, primary care capacity, and equity for disproportionately affected populations. Informed by national ADRD priorities, state plans convene stakeholders to identify local needs, gaps, and barriers and set the stage for development of a national public health infrastructure that can align clinical practice reform with population health goals. We propose policy and practice actions that would accelerate the collaboration between public health, community organizations, and health systems to improve ADRD detection-the point of entry into care pathways that could ultimately improve outcomes on a national scale. HIGHLIGHTS: We systematically reviewed the evolution of state/territory plans for Alzheimer's disease and related dementias (ADRD). Plan goals improved over time but lacked implementation capacity. Landmark federal legislation (2018) enabled funding for action and accountability. The Centers for Disease Control and Prevention (CDC) funds three Public Health Centers of Excellence and many local initiatives. Four new policy steps would promote sustainable ADRD population health improvement.

The intersection of social determinants of health and family care of people living with Alzheimer's disease and related dementias: A public health opportunity.

In this Perspective article, we highlight current research to illustrate the intersection of social determinants of health (SDOHs) and Alzheimer's disease and related dementia (ADRD) caregiving. We then outline how public health can support ADRD family caregivers in the United States. Emerging research suggests that family care for persons with ADRD is influenced by SDOHs. Public health actions that address these intersections such as improved surveillance and identification of ADRD caregivers; building and enhancing community partnerships; advancing dementia-capable health care and related payment incentives; and reducing the stigma of dementia and ADRD caregiving can potentially enhance the health and well-being of dementia caregivers. By engaging in one or all of these actions, public health practitioners could more effectively address the myriad of challenges facing ADRD caregivers most at risk for emotional, social, financial, psychological, and health disruption.

Caregiving in a Pandemic: Health-Related Socioeconomic Vulnerabilities Among Women Caregivers Early in the COVID-19 Pandemic.

PURPOSE: Family and friends who provide regular care for a sick or dependent individual ("caregivers") are at increased risk of health-related socioeconomic vulnerabilities (HRSVs). This study examined pre-pandemic prevalence of and early pandemic changes in HRSVs among women caregivers compared with non-caregivers. METHODS: A cross-sectional survey was conducted in April 2020 (early pandemic) with 3,200 English-speaking US women aged 18 years or older, 30% of whom identified as caregivers. We modeled adjusted odds of self-reported HRSVs (financial strain, food/housing insecurity, interpersonal violence, transportation/utilities difficulties) before and changes during the early pandemic by caregiving status. Models were adjusted for age, race/ethnicity, marital status, education, income, number of people in household, number of children in household, physical and mental health, and number of comorbidities. RESULTS: Pre-pandemic, 63% of caregivers and 47% of non-caregivers reported 1 or more vulnerability (P <.01); food insecurity was most prevalent (48% of caregivers vs 33% of non-caregivers, P <.01). In the early pandemic, caregivers had higher odds than non-caregivers of financial strain, both incident (adjusted odds ratio [AOR] = 2.1; 95% CI, 1.6-2.7) and worsening (AOR = 2.0; 95% CI, 1.4-2.8); incident interpersonal violence (AOR = 2.0; 95% CI, 1.5-2.7); incident food insecurity (AOR = 1.6; 95% CI, 1.2-2.1); incident transportation difficulties (AOR = 1.9; 95% CI, 1.3-2.6); and incident housing insecurity (AOR = 1.6; 95% CI, 1.1-2.3). CONCLUSION: The coronavirus disease 2019 (COVID-19) pandemic increased risk of incident and worsening HRSVs for caregivers more than for non-caregivers. COVID-19 response and recovery efforts should target caregivers to reduce modifiable HRSVs and promote the health of caregivers and those who depend on them.Annals Online First article.

Systems Delivery Innovation for Alzheimer Disease.

OBJECTIVE: The authors describe a comprehensive care model for Alzheimer disease (AD) that improves value within 1-3 years after implementation by leveraging targeted outpatient chronic care management, cognitively protective acute care, and timely caregiver support. METHODS: Using current best evidence, expert opinion, and macroeconomic modeling, the authors designed a comprehensive care model for AD that improves the quality of care while reducing total per capita healthcare spending by more than 15%. Cost savings were measured as reduced spending by payers. Cost estimates were derived from medical literature and national databases, including both public and private U.S. payers. All estimates reflect the value in 2015 dollars using a consumer price index inflation calculator. Outcome estimates were determined at year 2, accounting for implementation and steady-state intervention costs. RESULTS: After accounting for implementation and recurring operating costs of approximately $9.5 billion, estimated net cost savings of between $13 and $41 billion can be accomplished concurrently with improvements in quality and experience of coordinated chronic care ($0.01-$6.8 billion), cognitively protective acute care ($8.7-$26.6 billion), timely caregiver support ($4.3-$7.5 billion), and caregiver efficiency ($4.1-$7.2 billion). CONCLUSION: A high-value care model for AD may improve the experience of patients with AD while significantly lowering costs.

Screening Positive for Cognitive Impairment: Impact on Healthcare Utilization and Provider Action in Primary and Specialty Care Practices.

BACKGROUND: Alzheimer's disease, the most common cause of dementia, goes unrecognized in half of patients presenting to healthcare providers and is associated with increased acute care utilization. Routine cognitive screening of older adults in healthcare settings could improve rates of dementia diagnosis and patterns of healthcare utilization. OBJECTIVE: To evaluate the impact of screening positive for cognitive impairment on provider action in primary and specialty care practices and patient healthcare utilization. DESIGN: Individuals asymptomatic for cognitive impairment completed cognitive screening with the Mini-Cog (MC). Outcomes included MC screen-positive rates, provider follow-up actions, and healthcare utilization for all participants over a period of 36 months (18 months prior to and following MC screening). Data were extracted from the electronic medical record (EMR). Healthcare provider interventions and healthcare utilization for screen-positive and -negative groups, before and after screening, were compared. PARTICIPANTS: Primary and specialty care patients (n = 787) aged ≥ 65 without history of cognitive impairment seen in HealthPartners, an integrated healthcare system in Minnesota and Western Wisconsin. KEY RESULTS: In primary care and neurology practices combined, over the entire 36-month study window, individuals screening positive showed 32% higher rates of ED visits (p < 0.05) pre and post-screening compared to those screening negative. Screen positive also showed 39% higher rates of hospitalizations pre-screening (p < 0.05) and 58% higher rates post-screening (p < 0.01). While screen-detected cognitive impairment was associated with some relevant provider follow-up action in 32% of individuals, subsequent healthcare utilization did not change between the 18-month pre- and post-screening periods. CONCLUSION: Despite being associated with higher rates of healthcare utilization, screening positive on the MC led to a change in provider action in a minority of cases and did not reduce post-screening healthcare utilization. Screening for cognitive impairment alone is not sufficient to alter patterns of provider practice or patient healthcare utilization.

Personalized long-term prediction of cognitive function: Using sequential assessments to improve model performance.

Prediction of onset and progression of cognitive decline and dementia is important both for understanding the underlying disease processes and for planning health care for populations at risk. Predictors identified in research studies are typically accessed at one point in time. In this manuscript, we argue that an accurate model for predicting cognitive status over relatively long periods requires inclusion of time-varying components that are sequentially assessed at multiple time points (e.g., in multiple follow-up visits). We developed a pilot model to test the feasibility of using either estimated or observed risk factors to predict cognitive status. We developed two models, the first using a sequential estimation of risk factors originally obtained from 8 years prior, then improved by optimization. This model can predict how cognition will change over relatively long time periods. The second model uses observed rather than estimated time-varying risk factors and, as expected, results in better prediction. This model can predict when newly observed data are acquired in a follow-up visit. Performances of both models that are evaluated in10-fold cross-validation and various patient subgroups show supporting evidence for these pilot models. Each model consists of multiple base prediction units (BPUs), which were trained using the same set of data. The difference in usage and function between the two models is the source of input data: either estimated or observed data. In the next step of model refinement, we plan to integrate the two types of data together to flexibly predict dementia status and changes over time, when some time-varying predictors are measured only once and others are measured repeatedly. Computationally, both data provide upper and lower bounds for predictive performance.

Potentially preventable hospitalizations in dementia: family caregiver experiences.

BACKGROUND: Health crises in persons living with dementia challenge their caregivers to make pivotal decisions, often under pressure, and to act in new ways on behalf of their care recipient. Disruption of everyday routines and heightened stress are familiar consequences of these events. Hospitalization for acute illness or injury is a familiar health crisis in dementia. The focus of this study is to describe the lived experience of dementia family caregivers whose care recipients had a recent unplanned admission, and to identify potential opportunities for developing preventive interventions. METHODS: Family caregivers (n = 20) of people with dementia who experienced a recent hospitalization due to an ambulatory care sensitive condition or fall-related injury completed phone interviews. Interviews used semi-structured protocols to elicit caregivers' reactions to the hospitalization and recollections of the events leading up to it. RESULTS: Analysis of interview data identified four major themes: (1) caregiver is uncertain how to interpret and act on the change; (2) caregiver is unable to provide necessary care; (3) caregiver experiences a personal crisis in response to the patient's health event; (4) mitigating factors may prevent caregiver crises. CONCLUSIONS: This study identifies a need for clinicians and family caregivers to work together to avoid health crises of both caregivers and people with dementia and to enable caregivers to manage the health of their care recipients without sacrificing their own health and wellness.

Innovation in care for individuals with cognitive impairment: Can reimbursement policy spread best practices?

There is now an unprecedented opportunity to improve the care of the over 5 million people who are living with Alzheimer's disease and related dementias and many more with cognitive impairment due to brain injury, systemic diseases, and other causes. The introduction of a new Medicare care planning benefit-long sought openly by advocacy organizations and clinicians and badly needed by patients and families-could greatly improve health care quality, but only if widely and fully implemented. We describe the components of this new benefit and its promise of better clinical care, as well as its potential to create a new platform for clinical and health outcomes research. We highlight external factors-and some that are internal to the benefit structure itself-that challenge the full realization of its value, and we call for broad public and professional engagement to ensure that it will not fail.

Recurring Vivid Dreams in an Older Hmong Man With Complex Trauma Experience and Cognitive Impairment.

INTRODUCTION: Health care workers need to consider the culture and ethnic preferences prevalent in the Hmong community in order to provide optimal care. We describe an older Hmong man to illustrate the challenges faced and competencies needed by primary care. CASE PRESENTATION: An 80-year-old non-English speaking Hmong man with diabetes, nerve sheath tumor, and hypertension presented to the outpatient clinic with his grandson complaining of sleep problems. He had had 2 vivid recurring dreams during the previous few months. Memory assessment was significant for dementia. DISCUSSION: This case addresses the complexity in taking care of a non-English speaking Hmong older man who has memory loss, trauma in adulthood, multiple caregivers, and sleep problems. CONCLUSIONS: A careful history from patient and family to get to know their cultural preferences and attitudes was helpful. Identification of the primary caregiver was critical in providing care.

Psychometric Evaluation of Kingston Caregiver Stress Scale.

OBJECTIVES: Standardized measurement of caregiver stress is a component of Medicare's new health care benefit supporting care planning for people with dementia. In this article we identify existing measures of caregiver stress, strain and burden and propose specific criteria for choosing tools that may be suitable for wide use in primary care settings. We reviewed 22 measures and identified one, the Kingston Caregiver Stress Scale (KCSS), which met all the proposed criteria but had not been studied in a U.S. SAMPLE: We conducted a psychometric evaluation of KCSS to determine its potential usefulness as a care planning tool with a U.S. METHODS: We examined the internal consistency, test-retest reliability, component structure, and relationship to depression and anxiety in 227 dementia caregivers at two U.S. sites. RESULTS: The KCSS has high internal consistency and test-retest reliability, a strong factor structure, and moderate to high correlations with caregiver depression and anxiety. CONCLUSION: KCSS is a good candidate for use as part of comprehensive care planning for people with dementia and their caregivers. CLINICAL IMPLICATIONS: Routine assessment of caregiver stress in clinical care may facilitate timely intervention and potentially improve both patient and caregiver outcomes.

Symptom profiles and inflammatory markers in moderate to severe COPD.

BACKGROUND: Physical and psychological symptoms are the hallmark of patients' subjective perception of their illness. The purpose of this analysis was to determine if patients with COPD have distinctive symptom profiles and to examine the association of symptom profiles with systemic biomarkers of inflammation. METHODS: We conducted latent class analyses of three physical (dyspnea, fatigue, and pain) and two psychological symptoms (depression and anxiety) in 302 patients with moderate to severe COPD using baseline data from a longitudinal observational study of depression in COPD. Systemic inflammatory markers included IL1, IL8, IL10, IL12, IL13, INF, GM-CSF, TNF-α (levels >75thcentile was considered high); and CRP (levels >3 mg/L was considered high). Multinominal logistic regression models were used to examine the association between symptom classes and inflammation while adjusting for key socio-demographic and disease characteristics. RESULTS: We found that a 4-class model best fit the data: 1) low physical and psychological symptoms (26%, Low-Phys/Low-Psych), 2) low physical but moderate psychological symptoms (18%, Low-Phys/Mod Psych), 3) high physical but moderate psychological symptoms (25%, High-Phys/Mod Psych), and 4) high physical and psychological symptoms (30%, High-Phys/High Psych). Unadjusted analyses showed associations between symptom class with high levels of IL7, IL-8 (p ≤ .10) and CRP (p < .01). In the adjusted model, those with a high CRP level were less likely to be in the High-Phys/Mod-Psych class compared to the Low-Phys/Low-Psych (OR: 0.41, 95%CI 0.19, 0.90) and Low-Phys/Mod-Psych classes (OR: 0.35, 95%CI 0.16, 0.78); elevated CRP was associated with in increased odds of being in the High-Phys/High-Psych compared to the High-Phys/Mod-Psych class (OR: 2.22, 95%CI 1.08, 4.58). Younger age, having at least a college education, oxygen use and depression history were more prominent predictors of membership in the higher symptom classes. CONCLUSIONS: Patients with COPD can be classified into four distinct symptom classes based on five commonly co-occurring physical and psychological symptoms. Systemic biomarkers of inflammation were not associated with symptom class. Additional work to test the reliability of these symptom classes, their biological drivers and their validity for prognostication and tailoring therapy in larger and more diverse samples is needed. TRIAL REGISTRATION: Clinicaltrials.gov, NCT01074515 .

Report on milestones for care and support under the U.S. National Plan to Address Alzheimer's Disease.

INTRODUCTION: Under the U.S. national Alzheimer's plan, the National Institutes of Health identified milestones required to meet the plan's biomedical research goal (Goal 1). However, similar milestones have not been created for the goals on care (Goal 2) and support (Goal 3). METHODS: The Alzheimer's Association convened a workgroup with expertise in clinical care, long-term services and supports, dementia care and support research, and public policy. The workgroup reviewed the literature on Alzheimer's care and support; reviewed how other countries are addressing the issue; and identified public policies needed over the next 10 years to achieve a more ideal care and support system. RESULTS: The workgroup developed and recommended 73 milestones for Goal 2 and 56 milestones for Goal 3. DISCUSSION: To advance the implementation of the U.S. national Alzheimer's plan, the U.S. government should adopt these recommended milestones, or develop similar milestones, to be incorporated into the national plan.

Measuring caregiver activation for health care: Validation of PBH-LCI:D.

Improving the quality of health care for individuals living with dementia is a central goal of the National Alzheimer's Plan, and requires the participation of informed family caregivers as active members of the patient's health care team. "Caregiver activation" is an emerging concept for which dementia-specific measures are lacking. We developed and validated a new self-report index of caregiver activation, Partnering for Better Health - Living with Chronic Illness: Dementia ( PBH-LCI: D). PBH-LCI: D has high content validity and good internal consistency and test-retest reliability, with 32 items and a strong six-factor structure reflecting all major health care domains of dementia caregiving. Comparisons with measures of related constructs and potential caregiver and patient predictors of activation indicate that PBH-LCI: D measures a unique construct and therefore should be useful as a marker of caregiver needs for education and behavioral change coaching, and as the foundation for developing interventions to enhance caregiver activation and successful partnership with clinicians.

Dementia Services Mini-Screen: a simple method to identify patients and caregivers in need of enhanced dementia care services.

OBJECTIVE: Improving dementia care in health systems requires estimates of need in the population served. We explored whether dementia-specific service needs and gaps for patients and caregivers could be predicted by simple information readily captured in routine care settings. METHOD: Primary family caregivers (n = 215) rated their own current stress, challenging patient behaviors, and prior-year needs and gaps in 16 medical and psychosocial services. These were evaluated with other patient and caregiver characteristics in multivariate regressions to identify unique predictors of service needs and gaps. RESULTS: Caregiver stress and patient behavior problems together accounted for an average of 24% of the whole-sample variance in total needs and gaps. All other variables combined (comorbid chronic disease, dementia severity, age, caregiver relationship, and residence) accounted for a mean of 3%, with none yielding more than 4% in any equation. We combined stress and behavior problem indicators into a simple screen. In early/mild dementia dyads (n = 111) typical in primary care settings, the screen identified gaps in total (84%) and psychosocial (77%) care services for high stress/high behavior problem dyads vs. 25% and 23%, respectively, of low stress/low behavior problem dyads. Medical care gaps were dramatically higher in high stress/high behavior problem dyads (66%) than all others (12%). CONCLUSION: The Dementia Services Mini-Screen is a simple tool that could help clinicians and health systems rapidly identify dyads needing enhanced dementia care, track key patient and caregiver outcomes of interventions, and estimate population needs for new service development.

Cognitive and neuropsychiatric impairments in Alzheimer's disease: current treatment strategies.

This update on Alzheimer's disease (AD) discusses treatment strategies for cognitive and neuropsychiatric symptoms (such as agitation, psychosis, anxiety, and depression) common in this illness, emphasizing in particular nonpharmacologic strategies such as cognitive interventions, physical exercise, and psychotherapy. We provide an overview of cognitive enhancers and their combination strategies and medications commonly used for treatment of neuropsychiatric symptoms in AD. Finally, we give recommendations for providing support to caregivers and suggest how to identify caregiver/patient pairs most in need of intensive dementia care services.

How do care partners overcome the challenges associated with falls of community-dwelling older people with dementia? A qualitative study.

BACKGROUND AND OBJECTIVES: Previous studies have found that falls among community-dwelling older people with dementia negatively impact the health and well-being of their relative/friend care partners. Limited studies have explored the challenges care partners experience because of older people's falls (including fall incidents and fall risks). We sought to investigate care partners' experiences of these challenges and how care partners responded. METHODS: We conducted an inductive thematic analysis of 48 dementia care partner interviews (age range: 33-86, mean: 61, 70.8% women; 58.3% adult children; 29.2% spouse; 62.5% completed college; 25% people of color), conducted after a health crisis of older people with dementia from three local university-affiliated hospitals in the United States. FINDINGS: Care partners reported that falls in older people with dementia can intensify overall care demands and lead to self-sacrificing behaviors, dissatisfaction with healthcare providers, conflicts with care recipients, and intense emotions. Care partners described several adaptations to mitigate these impacts, including practicing acceptance, approaching falls as an opportunity for learning, facilitating collaborations within formal/informal care networks, collaborating with older people with dementia to balance autonomy and safety, and modifying the physical environment. DISCUSSIONS AND IMPLICATIONS: Falls among older people with dementia are a significant stressor and an important activation stimulus for their care partners. Our findings suggest that care partners are "second clients" and "competent collaborators." As they provide important insights about fall prevention, care partners should be engaged to co-design new multi-level interventions to facilitate collaborations among care networks, older people with dementia, and service providers.

Utilization of low- and high-value health care by individuals with and without cognitive impairment.

OBJECTIVES: Cognitive impairment and dementia have rising prevalence and impact the health care utilization and lives of older adults. Receipt of low-value (LV) care and underutilization of high-value (HV) care by individuals with these cognitive disorders may have negative consequences for patient health, health system efficiency, and societal welfare. Evidence on health care value among cognitively impaired individuals is limited; we thus ascertained receipt of LV and HV health care in older adults with normal cognition, cognitive impairment without dementia (CIND), and dementia. STUDY DESIGN: Retrospective cohort study of Health and Retirement Study data linked to Medicare claims (1996-2018). METHODS: We examined the association between cognitive decline and the receipt of 5 LV and 7 HV services vs individuals with no change in cognition. RESULTS: Receipt of LV care ranged from 4% to 13% regardless of cognitive status. Cognitive decline (from unimpaired to either CIND or dementia) was associated with decreased probability of receipt of 1 LV service (colorectal cancer screening at 85 years and older [5-percentage-point reduction; P = .047]) and 3 HV services (glucose-lowering drugs [7-percentage-point reduction; P = .029], statins [32-percentage-point reduction; P = .045], and antiresorptive therapy [61-percentage-point reduction; P = .019]). CONCLUSIONS: LV service receipt is wasteful and may be harmful, but it was not consistently associated with cognitive status. Lack of HV care for those with cognitive impairment could be a missed opportunity to improve well-being or reduce preventable adverse events. Our results suggest opportunities for improving the quality of care received by all older adults, including those with cognitive impairment.

The association of age, pain, and fatigue with physical functioning and depressive symptoms in persons with spinal cord injury.

CONTEXT/OBJECTIVE: To describe the relationship of pain and fatigue with physical and psychological functioning in adults with spinal cord injury (SCI). DESIGN: Cross-sectional survey. SETTING: Community-based survey. PARTICIPANTS: Convenience sample of individuals with SCI. INTERVENTION: Not applicable. OUTCOME MEASURES: Physical functioning (Patient-Reported Outcomes Measurement Information System (PROMIS) Physical Functioning item bank items), depression (Patient Health Questionnaire-9 (PHQ-9)), pain severity (0-10 Numerical Rating Scale (NRS)), and fatigue (0-10 NRS). RESULTS: Pain and fatigue were independently associated with depression, but only pain was associated with physical functioning. Additionally, depression was more severe among middle-aged participants relative to younger or older participants. Physical functioning declined with increasing age, as well as with higher level of injury. CONCLUSIONS: The findings support the need for continued development of effective treatments for both pain and fatigue in order to prevent and mitigate the negative effects these symptoms can have on functioning.