Improve the Collection, Availability and Utilization of Dementia-Related Data by the Relevant State Agencies

An image of Two Doctors

While state-level data is growing, gaps remain in areas such as subjective cognitive decline, Alzheimer’s disease diagnosis rates and the impact on caregivers. Regular collection of dementia-specific data is critical to allow for the analysis of trends over time. Through data collection and analysis, public health officials and state lawmakers can better understand the extent and impact of Alzheimer’s and other forms of dementia on their state. State policymakers can take action by:

  • Requiring collection and reporting of dementia-specific data by the state agencies responsible for Medicaid, public health, mental health, social services and aging.
  • Creating dementia-specific data points for these state agencies that relate to services provided to individuals living with dementia.

Establish a Statewide Alzheimer’s/Dementia Task Force That Is Administered by the State


By bringing together a wide range of key public and private stakeholders to collaborate, states can develop comprehensive policy solutions to help the growing number of Americans living with Alzheimer’s. State policymakers can take action by:

  • Establishing, re-authorizing or maintaining an Alzheimer’s task force to develop a state Alzheimer’s/Dementia plan.
  • Providing oversight to state agencies in implementation of the state Alzheimer’s plan.

Develop, Implement and Regularly Update a State Alzheimer’s/Dementia Plan in Collaboration with Community Stakeholders

Advisor Talking About Planning To Couple At Home

A lack of coordination between state agencies can hinder the ability of a state to evaluate the effectiveness of policy efforts across various programs serving those with dementia and their families. This makes it more difficult for a state to keep its state Alzheimer’s plan updated and relevant to the changing health care landscape. State policymakers can take action by:

  • Designating a state agency as the lead agency to address Alzheimer’s disease.
  • Directing the lead agency on Alzheimer’s disease to address the needs of individuals living with dementia through a state Alzheimer’s/Dementia plan.        
  • Directing the lead agency on Alzheimer’s disease to develop, implement and regularly update a state Alzheimer’s plan with all dementia stakeholders.

Establish a Permanent, Full-Time Dementia Services Coordinator Position and/or Dementia Unit Within the Relevant State Agency to Work Across Agencies and Divisions in Implementation of the State Alzheimer’s/Dementia Plan


Numerous state agencies administer a variety of programs that are critical to people living with dementia. However, their efforts are often siloed, with multiple state agencies working separately from each other. State policymakers can take action by:

  • Establishing a permanent, full-time Dementia Services Coordinator position and/or Dementia Unit.
  • Tasking the Dementia Services Coordinator/Unit with working across all state agencies and with community stakeholders to implement the Alzheimer’s/Dementia state plan.

Ensure All Relevant Statewide Plans and Assessments Include the Needs of Individuals Living with Dementia and Their Families When They Are Developed or Updated

Patient with Family Looking at Pamphlet

Each state has its own unique needs and challenges. For individuals living with Alzheimer’s, developing and implementing a timely and effective state response to this disease is critical. State policymakers can take action by:

  • Incorporating dementia into state community health assessment plans. 
  • Incorporating dementia into state health improvement plans (SHIP).
  • Incorporating dementia into state aging plans.  

Alzheimer’s Policy in the States

Across the nation AIM advocates are working to advance public policies to improve the lives of individuals and families impacted by Alzheimer’s and all other dementia. Learn about Alzheimer’s policies and advocacy in your state.