Understanding the scope of a problem and its impact is essential to developing effective policies and programs. Surveillance — collecting data, insight and information — is an essential function of public health. Through data collection and analysis, policymakers and public health officials can better understand the extent of a health issue, its impact, and drive positive changes to address the problem.

To help the public health community collect data and use evidence to inform practice, the Alzheimer’s Association and the Centers for Disease Control and Prevention (CDC) developed this topic-specific issue map — Data and Evidence for Action. It offers compelling data on the topic, a primer explaining the need for action, suggests related HBI Road Map actions, and provides case studies to demonstrate successful implementation.

Behavioral Risk Factor Surveillance System

Each year, every state conducts a public health survey through the Behavioral Risk Factor Surveillance System (BRFSS) in partnership with the CDC. States may collect data on the impact of cognitive decline and caregiving through use of two optional BRFSS modules:

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The Cognitive Decline Module

The BRFSS Cognitive Decline Module provides state-specific demographic, geographic and socioeconomic data on subjective cognitive decline (SCD). SCD is a term to describe a self-reported increase in confusion or memory loss that is happening more often. The module asks if a person is having difficulty with thinking or remembering and what, if any, the impact those difficulties in thinking have on everyday life. More and more research indicates that SCD is a strong indicator of future dementia risk. The SCD data outlines what the future burden of dementia may be in a given state, and can help public health agencies adequately prepare for that growing burden.
 
Over the 2015-2016 BRFSS surveys, 49 states, Puerto Rico and the District of Columbia used the Cognitive Decline Module. View the CDC’s Morbidity and Mortality Weekly Report for in-depth analysis of this aggregated data.

Over the 2019-2020 BRFSS surveys, 47 states, Puerto Rico and the District of Columbia used the Cognitive Decline Module. Aggregated analysis of this new dataset will be forthcoming in 2021.

BRFSS Cognitive Decline Module
Purple indicates state committed to using module in 2019 and/or 2020

 

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BRFSS
Find state-specific BRFSS data below:

No known public health action at this time.

Quick facts

Learn how BRFSS data helps us better understand the impact of cognitive impairment on health with the following fact sheets:

The Caregiver Module

The BRFSS Caregiver Module provides data about caregivers and the challenges they face while providing care to a friend, family member or neighbor. This module asks about a care recipient's health problems and what kind of care that the recipient needs. The Caregiver Module also provides insight into the scope and burden of caregiving responsibilities. The module enables us to compare the experiences of Alzheimer's and dementia caregivers with caregivers of people with other conditions.
 
Over the 2015-2017 BRFSS surveys, 45 states, Puerto Rico and the District of Columbia used the Caregiver Module. View the CDC’s Morbidity and Mortality Weekly Report for in-depth analysis of this aggregated data.
 
With support from the Alzheimer's Disease + Healthy Aging Program at the CDC, AARP and a variety of state-based partners, the Alzheimer’s Association is pursuing a nationwide campaign for all states to include the Caregiver Module in either the 2021 or 2022 BRFSS surveys.

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Select Filters
BRFSS
Find state-specific BRFSS data below:

No known public health action at this time.

Quick facts

Learn how BRFSS data helps us better understand the impact of dementia caregiving:

 

Needs assessment

Comprehensive needs assessments are at the core of a state’s ability to effectively develop, implement and maintain strategies that improve the health and well-being of people throughout the state. Public health agencies have expertise developing and conducting needs assessments and can use that expertise to ensure that cognitive health, cognitive impairment and caregiving are assessed. Public health agencies then can incorporate those findings into state public health improvement plans, state plans focused exclusively on Alzheimer’s and other dementias, or related health promotion and injury reduction plans.
 
To help states better understand the needs and assets of their populations, set priorities for future action, and better address cognitive impairment within their communities, the Alzheimer’s Association in partnership with the Centers for Disease Control and Prevention (CDC) created the Needs Assessment Toolkit: Guidance and Resources for State Public Health Agencies on Comprehensive Needs Assessments Related to Alzheimer’s and Other Dementias.

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Needs assessment resources

Tools for state governments to better understand their needs and assets:


 

Additional data

Former Surgeon General Dr. David Satcher said, “In public health, we can’t do anything without surveillance. That’s where public health begins.” Quality data collection and analysis equips policymakers, providers and public health officials with the necessary information to improve health and well-being throughout their communities. Increasingly, data collection efforts are focusing on the unique challenges and needs posed by Alzheimer’s, dementia and cognitive impairment.
 
The Centers for Disease Control and Prevention (CDC) operates the Healthy Aging Data Portal, a collection of key indicators of health and well-being, screenings and vaccinations, and mental health among older adults at the national and state levels.

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Featured Resources

National Academies of Sciences, Engineering, and Medicine Cognitive Aging - Progress in Understanding and Opportunities for Action
Centers for Disease Control and Prevention Healthy Aging Data Portal

Additional Resources

American College of Preventive Medicine Brain Health Course
Alzheimer's Association Healthy Living for Your Brain and Body: Tips from the Latest Research

State-specific action you can take

Communities are taking public health action against Alzheimer’s and other dementias. Find out how the disease impacts your state and what you can do to make Alzheimer's the next public health success story.

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