Over the past two decades, nearly all states and territories have published their own plans for mitigating the public health effects of Alzheimer’s disease and related dementias (ADRDs). Although many of these plans address important issues such as primary prevention, early detection, and inequitable population impacts, little is known about the efficacy of those efforts.

In a study published in Alzheimer’s & Dementia, researchers examined the history of state and territory ADRD plans and analyzed their design and implementation—and found significant shortcomings in many areas. They also offered policy recommendations on both the state and federal levels to address those issues.

Here, nationally recognized Alzheimer’s disease expert Joshua Chodosh, MD, a senior author of the study and the Michael L. Freedman Professor of Geriatric Research at NYU Langone Health, discusses its findings.

Asking New Questions

Physician Focus: Dr. Chodosh, what was your team’s goal in analyzing this massive collection of public health plans?

Dr. Chodosh: We wanted to understand what the states and territories were doing about ADRDs, and how well they were doing it. It’s great to have an initiative and the motivation and ambition to do something. But has it led to significant outcomes? And did any of these plans have elements that might be useful for other states to emulate?

“It’s great to have an initiative and the motivation and ambition to do something. But has it led to significant outcomes?”

Joshua Chodosh, MD

Though state and territory plans started emerging soon after the Centers for Disease Control and Prevention and the Alzheimer’s Association launched the Healthy Brain Initiative in 2005, no one had ever tried to answer those questions systematically. As a first step, we focused on the topic of improving early detection as a public health priority.

We also wanted to trace the evolution of the plans and how it was affected by national capacity-building initiatives. To that end, we looked at how state plans have addressed three priorities specified in the 2011 National Alzheimer’s Project Act, or NAPA: improving rates and timeliness of ADRD detection and diagnosis, developing the primary care workforce for dementia detection and care, and promoting equity for populations disproportionately affected by ADRD.

Analyzing Efficacy

Physician Focus: How did you and your colleagues go about your investigation?

Dr. Chodosh: Through web searches, we identified plans for 49 states, plus the District of Columbia and Puerto Rico. We then created a uniform variable structure, including the year of initial plan development, to identify common objectives, highlight key recommendations within each objective, and collate commonalities across plans. We also identified objectives within each of the three key NAPA priority categories that could be compared across plans.

To characterize the quality of state and territory plans, we determined whether each NAPA healthcare priority was identified as a problem with a goal for improvement, and whether any specific strategies or action steps were proposed to achieve that goal. We examined plans that included actionable strategies to see if they included criteria for evaluating results.

Finally, we looked at the composition of each plan’s stakeholder working groups to see the extent to which public health entities, such as departments of public health, were integrated into the planning process.

Uncovering Widespread Shortcomings

Physician Focus: What were your main findings?

Dr. Chodosh: We found that most state and territory plans had no real implementation plan. More specifically, they lacked any kind of financial infrastructure to implement their objectives.

Equally important, most of the plans had no clarity on evaluation. If you do implement some aspect of your plan, how do you know if it’s had an impact? What data is available to you? What data do you need that isn’t available, and how will you get it? Once you get it, how will you use it? Those questions remained largely unanswered.

“We have no nationally supported quality measures for dementia care in the United States. It’s hard for states to be sure what they should be measuring.”

One big reason for this uncertainty is that we have no nationally supported quality measures for dementia care in the United States. So it’s hard for states to be sure what they should be measuring.

Physician Focus: Have the shortcomings you identified improved over time?

Dr. Chodosh: To some extent. Health equity was a minor focus before NAPA; it has emerged as a distinct one for most of the 39 plans created after 2011. The Centers for Medicare & Medicaid Services’ introduction of the Medicare Annual Wellness Visit in 2012 made ADRD detection an explicit target for clinical improvement. Since then, there’s been an emerging focus on including dementia in medical training curricula.

The BOLD Infrastructure for Alzheimer’s Act of 2018 has also spurred some changes. Before its passage, few public health departments were formally integrated into state and territory ADRD plans; that has begun to change. The BOLD Act also provides funding for states to develop blueprints for implementation and evaluation of their plans. That has moved the needle a bit, but we’re still far from where we need to be.

A Road Map for Improvement

Physician Focus: What can be done to improve state and territory ADRD plans?

Dr. Chodosh: In our paper, we offer four policy recommendations. First, the federal government should establish a national authority to oversee planning and implementation of public health measures around ADRDs. Second, we need to develop standardized, reportable measures of ADRD detection, care, and quality. Third, we should explore new opportunities for sustainable public health funding on the state level. And fourth, we should require collaboration between all national agencies and organizations that have ADRD components.

We’re heading in the right direction, but the work has just begun.