Far too many people with AD/ADRD are not diagnosed until their symptoms have become severe. Timely diagnosis gives people with the condition and their families and caregivers time to plan and prepare for the future, leading to more positive outcomes for both. For some, the inability to access health care due to a lack of insurance or limited finances is a major concern. This is particularly important for individuals with younger-onset disease who may not yet be eligible for Medicare. Even with access to affordable care for individuals, the health care workforce needs tools that can help ensure timely and accurate diagnoses. Research has helped identify some assessment tools that can be used to detect cognitive impairment that may indicate the need for a comprehensive diagnostic evaluation for AD/ADRD. The actions below will facilitate appropriate assessment and give health care providers tools to make timely and accurate diagnoses.
(UPDATED) Action 2.B.1: Identify and disseminate appropriate assessment tools
NIA continues to expand its efforts to educate clinicians about recent research findings; clinical practice tools for assessment, diagnosis and management of cognitive impairment; training materials; a patient checklist handout in English and Spanish, and other resources, which are available online in a mini-portal of resources for professionals.
NINDS continues to support DetectCID, a national consortium to test and validate clinical paradigms that can be used in primary health care and other everyday clinical settings. The ultimate goal is to increase detection of cognitive impairment/dementia among high risk populations, including health disparity populations, and lessen cultural and logistic barriers that currently impede both clinical care and research efforts. Three research teams across the United States are focusing on utilizing assessment tools that are simple to use, standardized, and take 10 minutes or less to administer in a primary care setting.
For more information, see:
(UPDATED) Action 2.B.2: Educate family and service providers of persons with intellectual and developmental disability about changes that may indicate the onset of dementia
ACL, through their Alzheimer's/dementia grants to states and communities are providing dementia-capability training to paid and unpaid caregivers of persons living with dementia, including individuals living with IDD and dementia or at risk of developing dementia. For example, through the ACL community grant program, 31 of 43 funded projects (in 22 states and Puerto Rico) include IDD culturally-competent ADRD education/training activities components. ACL collaborates closely with the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) with many grantees participating in their education workshops, becoming affiliated trainers and further disseminating education on IDD and dementia, as well as implementation of their Early Detection Screen for Dementia (NTG-EDSD) tool.
Two webinars and an issue paper were made available in 2015. One webinar was offered in 2017 and another in 2018. All webinars are available on the NADRC's website.
For more information, see:
(UPDATED) Action 2.B.3: Increase awareness of Alzheimer's disease and related dementias in Tribal and Urban Indian communities and of the availability of services for individuals with dementia and their families
IHS, with ACL and VA, pilot-tested AD/ADRD awareness strategies in communities in which Resources Enhancing Alzheimer's Caregivers Health (REACH) into Indian Country was successfully implemented, through both health care and aging services settings. The focus of the REACH intervention in its final year was on increasing awareness of AD/ADRD in those communities served by REACH and increasing use of REACH caregiver support services.
Regular web-based calls with REACH Caregiver Coaches aimed at increasing awareness and use of the caregiver support services in Tribal communities.
ACL continues to bring awareness to ADRD in Indian Country through participating in educational opportunities including presentations to attendees of ACL's Title VI annual conference and webinars.
(NEW) Action 2.B.4: Increase provider awareness of the need for early diagnosis and provide tools and resources to enable diagnosis and referral
CDC is working with the American College of Preventive Medicine to develop a curriculum to increase physician and health care professionals' awareness of brain health as a serious health condition and to increase the number of physicians and health care professionals acting to address, diagnose, and refer patients with brain health issues to care and community support programs.
The new module will be included as an elective in the Lifestyle Medicine Core Competencies Online Program.
(NEW) Action 2.B.5: Understand the discordance between reported diagnosis, claims, and functional assessment for people with Alzheimer's disease and related dementias
ASPE is working on a project to understand the discrepancy between patient or proxy-reported dementia diagnosis, an indication of dementia in Medicare claims data, and performance on tests of cognitive functioning. Although people with dementia should have all of these indicators and be aware of their diagnosis, that is often not the case. By examining the characteristics of people for whom there is a discrepancy, there will be better understanding of how to improve patient awareness of diagnosis and also improve care planning.