Bob DeMarco Alzheimer's Reading Room

Saturday, February 18, 2012

Advisory Council on Alzheimer's Research, Care, and Services -- Goal 4: Enhance Public Awareness and Engagement


Asking organizations who's life blood is raising money to cooperate is like asking the "fox to guard the chicken coup".
These organizations have already decided that a message of fear is what resonates. Resonates is a code word for "raises money".

Alzheimer's Reading Room

In January, 2012, The Draft Framework for the National Plan to Address Alzheimer's Disease was released.

The draft framework was structured around five ambitious goals:
  • Prevent and Effectively Treat Alzheimer's Disease by 2025.
  • Optimize Care Quality and Efficiency.
  • Expand Patient and Family Support.
  • Enhance Public Awareness and Engagement.
  • Track Progress and Drive Improvement.

The Advisory Committee has now released a series of action proposals on each of the five goals contained in the draft framework.

In this article we will focus on Goal 4: Enhance Public Awareness and Engagement.

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This is the original goal statement as it was outlined in the framework.

Goal 4: Enhance Public Awareness and Engagement

Most of the public is aware of Alzheimer’s disease: more than 85 percent of people surveyed can identify the disease and its symptoms. Alzheimer’s disease is also one of the most-feared health conditions. Yet there are widespread and significant public misperceptions about diagnosis and treatment.19

These misperceptions lead to delayed diagnosis and to people with the disease and their caregivers feeling isolated and stigmatized.

Enhancing public awareness and engagement is an important goal because it forms the basis for advancing the other goals of the National Plan.

A better understanding of Alzheimer’s disease will help engage stakeholders who can help address the challenges faced by people with the disease and their families. These stakeholders include a range of groups such as health care providers who care for people with Alzheimer’s disease and their caregivers, employers whose employees request flexibility to care for a loved one with the disease, women’s and other groups whose members are caregivers, and broader aging organizations.

The strategies under this goal are designed to educate these and other groups about the disease.

Strategy 4.A: Educate the Public about Alzheimer’s Disease

Greater public awareness of Alzheimer’s disease can encourage families to seek assessment, reduce isolation and misunderstanding felt by caregivers, and help link people in need to accurate information, resources and services.

Strategy 4.B: Work with State and Local Governments to Improve Coordination and Identify Model Initiatives to Advance Alzheimer’s Disease Awareness and Readiness Across the Government

State and local governments are working to help address challenges faced by people with Alzheimer’s disease and their caregivers. Nineteen states and a handful of local entities have published plans to address Alzheimer’s disease that cover many of the same issues as the National Plan.20

Leveraging the available resources and programs across these levels of government will aid in the success of these efforts.

The following is the current action proposal for Goal 4: Enhance Public Awareness and Engagement.

Strategy 4.A: Educate the Public about Alzheimer’s Disease.

The proposed action was the design and implementation of a national education and outreach campaign on Alzheimer’s disease.

Dr. Lamont requested additional input from Advisory Council members to further define the appropriate audiences, messages, and medium.

During the discussion period, Advisory Council members agreed that an inventory of existing educational resources could be collected (e.g., from the Alzheimer’s Association, Alzheimer’s Foundation, NIA's Alzheimer's Disease Education and Referral Center) and that a campaign would require substantial public and private resources.

Strategy 4.B: Work with State and Local Governments to Improve

Coordination and Identify Model Initiatives to Advance Alzheimer’s Disease Awareness and Readiness Across the Government.

The suggested action is to convene local, state, and federal leadership to outline strategies to leverage available resources and programs across multiple levels of government. During the discussion period, Advisory Council members requested that an analysis of existing state plans on Alzheimer’s disease be provided to the Advisory Council and suggested a review of Alzheimer’s plans in other countries.

Advisory Council members also inquired about who would convene the governmental leaders and whether the discussion should include private industry leaders. Dr. Moulds responded that HHS is looking to the Advisory Council for guidance for the Federal Government on ways to convene leaders and ways to reach out to other stakeholders. One Advisory Council member suggested that non-federal stakeholders could convene leaders and bring suggestions back to HHS for consideration. Dr. Moulds reiterated that there is nothing in Federal Advisory Committee Act rules that would prohibit that kind of activity.

My comment:

There is little here so far that is new or original. Everyone knows that education is a problem. Particularly around the "stigma" that is attached to Alzheimer's.

The agenda of the best funded organizations is an agenda of fear, and these types of campaigns have been around since the 1970s. Asking organizations who's life blood is raising money to cooperate is like asking the "fox to guard the chicken coup".

These organizations have already decided that a message of fear is what resonates. Resonates is a code word for "raises money".

If the well funded organizations were addressing the obvious problems, and important issues in any real and effective way, there wouldn't be a problem, or at the very least there would already be a working model that could be leveraged. Asking them to cooperate and participate is an open invitation to allow them to broaden their base, and maintain control. Their number one goal will always be one and the same, raise money to foster their own agenda.

There is already a good plan in place in Vermont and a few other states that provide dollar support to help caregivers keep their loved one at home. I see no mention of this issue so far.

The vast majority of person living with Alzheimer's want to stay at home.

I wrote the following in 2008:

You are probably thinking there is no way those politician in Washington would ever support an idea as radical as mine or the program being offered in Vermont.
"the federal government beginning in 2007, encouraged states to use less strict medical standards, and make Medicaid more widely available to those who could be cared for at home.
The keyword is encouraged. The committee would be best served by working to get this mandated -- Now.

I think the committee members should read this book, Caring for Our Parents: Inspiring Stories of Families Seeking New Solutions to America's Most Urgent Health Crisis.

The book identifies real issues and discusses real, innovative, solutions. The committee should be discussing issues like these and how they relate to the Alzheimer's community.

It would be more effective to boil this broad framework into three bullet points, and then write a plan along with the funding requirements for each point.

The smorgasbord of issues currently being address is more than can be done right now, and it is unrealistic to think or believe anything effective or life changing, will come out of a smorgasboard approach like this one.

In order to make an effective case you must first identify an "issue". You cannot argue for 4 or 5 or more programs by bundling them together, and then expect anyone to understand what you are proposing. Which issue is most important? What obtainable program will accomplish the most good? What program can be implemented quickly and effectively?

So far this looks like some pie in the sky endeavor that is likely to bring whatever dollars are available into all the same old places. Everyone will agree that all the goals are necessary. Then they will throw a few bucks at each one and nothing will change.

What we need right now is a National Plan to Support Alzheimer's Caregiver and the Person Living With Dementia.

The number one goal of this plan should be to keep the person living at home, this will be cost effective, and will save the government money. The second goal of this plan should be to make sure that AD caregivers remain healthy physically, emotionally, and mentally. This is not happening right now.

There are more than 5 million Americans living with Alzheimer's, and approximately 15 million caregivers. Right now.

In order for change to happen soon all we need to do is change the word "encouraged" to mandated. Right now.

http://aspe.hhs.gov/daltcp/napa/011712/Mtg2Sum.pdf



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Original content Bob DeMarco, the Alzheimer's Reading Room