National Plan to Address Alzheimer's Disease: 2018 Update. Strategy 2.D: Identify High-Quality Dementia Care Guidelines and Measures Across Care Settings


Guidelines for delivery of high-quality care and measures of quality care are needed to ensure that people with AD/ADRD receive high-quality, culturally-competent care in the many different settings where they receive services. These guidelines and measures should be tailored to the stages of the disease, address the physical, cognitive, emotional, and behavioral symptoms of AD/ADRD, and cover the myriad care settings in which care is delivered. These guidelines should also take into account how care might be modified for diverse populations and in the context of co-occurring chronic conditions in people with AD/ADRD. HHS will seek expert input from public and private entities and ensure that content builds on existing, evidence-based guidelines. Quality measures should be based on such guidelines and track whether recommended care is being provided. Guidelines and measures need to be free of conflicts of interest. The actions below will advance the development of guidelines and measures of high-quality care, as well as the ability of the provider community to improve the quality of the care they provide. In the future, to facilitate the implementation of quality care guidelines and measurement, HHS will explore development and electronic sharing of clinical decision support interventions in concert with guidelines and measures to provide physicians the information they need at the point of care and ensure continuity between measurement, evaluation, and best practice.

(UPDATED) Action 2.D.1: Explore dementia care guidelines and measures

CMS has included dementia-related measures in the Merit-Based Incentives\Payment System for Medicare such as cognitive assessment, management of neuropsychiatric symptoms (NPS), and others that impact people with dementia.

CMS is also continuing its work to test and develop measures and measure concepts for HCBS.

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(UPDATED) Action 2.D.2: Solicit stakeholder input on meaningful outcomes to drive quality measurement

CMS's initial target was met; the agency is continuing the work of reviewing literature and guidelines, and continues to support quality measure development and implementation.

CMS's "Meaningful Measures" framework identifies the highest priorities for quality measurement and improvement. It involves only assessing those core issues that are the most critical to providing high-quality care and improving individual outcomes. The Meaningful Measure Areas serve as the connectors between CMS goals and individual measures/initiatives that demonstrate how high-quality outcomes are being achieved across settings of care. CMS also launched the "Patients Over Paperwork" initiative to reduce provider burden and increase efficiencies while improving the beneficiary experience; initial work focused on nursing home care.

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(UPDATED) Action 2.D.3: Clarify and disseminate information on privacy, autonomy, and safety issues to physicians

HRSA worked to develop information for physicians on privacy, autonomy, and safety issues around AD/ADRD. These resources are intended to help providers better understand these issues and the balance between safety, privacy, and autonomy. HRSA continues to disseminate this information through the trainings provided by the GWEP awardees.


(UPDATED) Action 2.D.4: Provide improved training resources to Indian Health Service staff on person-centered goals and strategies for care improvement

IHS collaborated with HRSA to engage the HRSA-funded GWEPs in strategies to improve recognition and diagnosis of dementia. Eight HRSA GWEPs are currently partnering with federally recognized Tribal organizations and one HRSA GWEP collaborates with a non-federally recognized Tribal organization. The nine GWEPs have developed a Native Populations Interest Group in preparation for exchanging training materials. The University of Wyoming is currently pilot-testing culturally-relevant dementia training material for American Indian and Alaska Native people on the Wind River Reservation by creating a pictorial version of the Alzheimer's Association's "Know the 10 Signs: Early Detection Matters". The other members of the Interest Group are discussing how/whether to adopt similar materials.


(COMPLETED) Action 2.D.5: Understand trends in residential care settings for older adults

ASPE conducted an analysis of three national surveys -- the Health and Retirement Survey (HRS), the Medicare Current Beneficiary Survey (MCBS), and the National Health and Aging Trends Survey (NHATS) -- that estimated that the number of older Americans living in community-based residential care ranges from 0.8 million (2014 HRS) to 1.9 million (2015 NHATS); the estimate from the 2013 MCBS was in the middle: 1.2 million. The proportion of older adults living in these settings increased from 2.3% in 2002 to 2.7% in 2013 in the MCBS, but a decline was observed in the HRS and NHATS, although the number of individuals increased. These differences across surveys likely reflect variation among the surveys in how residential care settings are defined, and in how samples are selected.

With a few key exceptions, the demographic characteristics of residents were similar across years and across datasets. The age distributions of older adults living in community-based residential settings were comparable to those living in nursing homes (48%-55% of residents were aged 85 and older), while those living in traditional settings were younger (approximately 50% were ages 65-74). Marital status also varied by setting, with more than half of those living in traditional settings being married, and more than half of those in community-based residential care or nursing homes being widowed. Estimates of functional limitation varied across data sources, likely resulting from differences in definitions and approaches to data collection. The general patterns, however, were consistent. In all data sources, and at all points in time, people living in community-based residential care settings reported more impairments than did those living in traditional settings. The prevalence of AD/ADRD was lowest among those living in traditional settings, and highest among those living in nursing homes. In all settings, the proportion of people with any type of dementia increased over time. These patterns were consistent across datasets, but the prevalence rates varied, depending how data were collected. The report will be posted in late 2018.


(DISCONTINUED) Action 2.D.6: Study factors influencing the progression of disability in older adults

ASPE expected to use NHATS data from 2011 to 2015 to study the progression of disability and the implications for caregiving needs. Outcomes data would be tabulated each year (death, long-stay nursing home admission, and residential care admission, continued or increased use of informal/paid care). Those who develop dementia after 2011 would be studied, but most cases would already have dementia or symptoms in 2011, and the course of their condition would be followed through 2015.

This project was discontinued, due to data limitations; however, other data may be used to explore these topics in the future.