National Alzheimer's Project Act: Public Comments on Advisory Council Meeting, April 2015

12/29/2015

ADVISORY COUNCIL ON ALZHEIMER'S RESEARCH, CARE, AND SERVICES

Public Comments on Advisory Council Meeting, April 2015

List of Comments

   

Comments and questions, or alerts to broken links, should be sent to napa@hhs.gov.
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PLEASE NOTE: The Public Comments included here are not an endorsement of the views or information by National Alzheimer's Project Act, its Advisory Council members, the Administration or the federal agencies involved in this project.


 

J. Imm  |  04-28-2015

Public Comment by Jeffrey Imm, lead of volunteer human rights group, Senior Lives Matter

My name is Jeffrey Imm, I am a caregiver for my 84 year old mother with Alzheimer's Disease. I thank the Advisory Council for the opportunity to provide public comments, and I thank the Advisory Council for the efforts being made to help those affected by this disease. I am especially encouraged to see the efforts of the Department of Justice, which I once worked for, in seeking to look out for the rights and justice of those impacted by Alzheimer's Disease and Dementia.

However, we are still at the starting gates. Alzheimer's Disease was first described in 1906, over 100 years ago. We still do not have the basic science to know the cause of this, an effective treatment, or a cure. The deliberate strides made to combat this illness need to reflect the reality of the emergency that we are now facing.

We need a renewed, publicly visible sense of urgency to gain cooperation, and to obtain the trust of the American people so that that they will be candid with us and help in clinical trials. They need to believe that we are passionately and urgently looking for answers. The Baby Boomer generation will pose a very significant challenge with over 13 million or more victims of this disease. The reality is that this could be significantly worse than the current projections, especially given the long history of under-reporting on Alzheimer's Disease and dementia.

As the leader of the volunteer human rights group, Senior Lives Matter, I am issuing this Declaration of War on the mass-murdering Alzheimer's Disease, on behalf of the American people and all of our fellow human beings. We need a sense of immediate urgency, which is reflected in our priorities, our funding, decision-making, and most of all, our actions as a nation. If it will take decades to find a cure, then we need to find treatments to allow those affected by this human rights-stealing disease to preserve as much of their Constitutional and human rights as possible, to live their lives with as much normalcy as possible.

If anywhere in America, over 5 million of our fellow citizens were being killed, stripped of their identities, and denied their human rights and Constitutional liberties, it would be a state of emergency. If any enemy of our nation attacked our citizens in such a cruel and merciless manner, it would the top priority of our nation's leadership to use its emergency war powers to do everything possible to defeat such an enemy and such a threat to our national and homeland security. We are in such a state of emergency today. We need urgency and nationwide cooperation to do whatever is necessary to defeat this enemy of our shared human rights and dignity. The worst of the attacks on our nation by Alzheimer's Disease will soon be upon the large Baby Boomer generation. Failure to aggressively act will be surrendering our nation and its values to an enemy that seeks nothing less than total destruction of millions of Americans, their families, their communities, and their economies. We cannot and we must not allow this Alzheimer's Disease to dictate the future of our nation and its people. God Bless America.

Statement Online:
http://www.seniorlivesmatter.com/napa/advisory-council-statement/


E. Long  |  04-13-2015

Hello. The following people would like to attend the April 28th Advisory Council meeting:

  1. Yvonne Eisner
  2. Mark Eisner
  3. Erika Long

Additionally, attached is Yvonne's two minutes speech she plans on giving during the meeting. Thank you and please do not hesitate to contact me with any comments or questions.

ATTACHMENT:

Good Morning, my name is Yvonne Eisner. I would like to thank you and the Care More Medical Group for the opportunity to speak today. I am speaking of my experience as a caregiver for my mother Amelia Simpson who suffered from Dementia.

I cannot remember when I first heard my mother was diagnosed with dementia or when I first saw it written. It just seemed to appear without any official acknowledgement of its existence. In some ways dementia affected me the same way it affected her. Little by little your life changes and you become involved in the problem or issue of the moment and you don't see that you are deeply involved in a very daunting and emotionally draining journey. Vascular dementia slowly shut her physical and mental function.

We were referred to Care More's Mental Health Clinic where Monica Cheng the psychiatric nurse practitioner prescribed medication and referred us to the Brain Health Clinic. The clinic not only treated my mother but in a sense treated me, ensuring I would be able to cope and provide her the care she needed. Unfortunately, mom's condition worsened rapidly and she was not able to fully benefit from the program.

As her caregiver I was at a loss, tending to the day to day issues of caring for my mother that I was not able to understand and or deal with her decline. I could have read all the information available on the internet regarding dementia but I could have not been able to process the information until Dr. Debra Hadden and Amy Pound, MSW of the Care More Brain Health Clinic explained it. It was then that I understood the reasons for her behavior. They also taught me how to understand the disease and take better care of her.

Dr. Hadden and Amy, educate patients, family and caregivers on what the disease is, how to cope with it and most importantly provide support. The three Brain Health Classes provided are Disease Management for basic understanding of her individual case; how the dementia affected her ability to swallow and walk and the nuance of dementia such as personality traits can be exaggerated which was making her difficult to deal with and care for. Safety issues of dementia, which had we attended sooner could have avoided urgent care visits and Legal Issues of Dementia, the importance of an advanced directive and power of attorney for health care

This leads me to an example I would like to provide of why educating the patient, family and caregivers early is extremely crucial. My mom was experiencing shortness of breath. She was tested for blockages. The test was inconclusive, the shortness of breath continued. I thought the shortness of breath was minimal and might actually be anxiety. What she was experiencing did not interfere with her quality of life but stents were placed in her arteries. The procedure itself went well, but she lost a lot of blood and needed a transfusion, upon being discharged she had a seizure and was then admitted for observation. If there had been a protocol in place where the Brain Health Clinic had been in the loop, the procedure may have not taken place and she would not have had to experience that ordeal, which was very traumatic for her and me.

Early detection and education is so crucial not only the reasons I mention but mostly to provide the patient with the best quality of life during their last years by educating the family and caregivers to develop the coping skills necessary to care for the patient. Before being a part of the Brain Health Clinic I wasted so much time and energy attempting to reason with her, only to increase her anxiety and paranoia. I worried, cried and became so stressed that I was considering the possibility of admitting her into a nursing home. Something I never wanted for my mother.

Please understand this is very personal to me because if it were not for the support of the Brain Health Clinic I would have not been able to keep my mom at home. So if you can please put yourself in my place and see that without this program my mother would have spent her last year or years living with and being cared for by strangers.

I would like to close this by expressing my most sincere wish. I hope that the words I and speak will lead to a protocol that would include early detection of dementia and Alzheimer's to be placed on the annual physical exam, where a patient can be referred to the Brain Clinic for further evaluation. In the event that dementia or Alzheimer's wasn't detected at least it will bring awareness to the patient and family. In the event that it is, it will provide education of the disease, knowledge of how to handle it and the support to do it successfully.


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