National Alzheimer's Project Act: Public Comments on Advisory Council Meeting, September 2011

12/28/2015

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

Public Comments on Advisory Council Meeting, September 2011

List of Comments

   

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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.


 

L. Stevens  |  11-22-2011

Please find the attached comments from the Society for Women's Health Research (SWHR). If you have any questions or have problems opening the document, please let me know.

ATTACHMENT:

The Society for Women's Health Research (SWHR) is writing to the Advisory Council on Alzheimer's Research, Care, and Services in regards to the National Alzheimer's Project Act (NAPA). SWHR has key scientific recommendations that it believes the Advisory Council should consider as it is establishing an integrated national plan to overcome Alzheimer's disease.

SWHR, a national non-profit organization based in Washington, D.C., is widely recognized as the thought leader in research on sex differences and is dedicated to improving women's health through advocacy, education, and research. SWHR appreciates the work NAPA is and will be doing to focus our nation's resources on Alzheimer's disease. While Alzheimer's disease is a disease of the brain, the brains of men and women are inherently different. It is common knowledge that men and women think differently; however, recent scientific discoveries have demonstrated that the difference goes beyond thought processes. Sex differences have been observed in the anatomy of the brain, behavioral traits, and in the physiological responses of the nervous system to outside stimuli and internal perturbation. These differences are also noted in the aging process and for the degenerative diseases such as Alzheimer's and Parkinson's disease.

SWHR believes that sex differences in Alzheimer's disease are critical to scientific advancements in diagnosing and treating the disease and need to be a part of the plan's scope. In October 2011, SWHR convened a one-day scientific roundtable of experts to discuss what is known about sex and gender differences in Alzheimer's disease, from both a basic and clinical science perspective as well as those of the caregiver and what research questions needed to be answered for progress to be made in the disease for all who are impacted. From the meeting it was clear that Alzheimer's disease research must account for sex as a basic biological variable and include sex-specific analyses and would be an extremely useful component of a national strategic plan to combat Alzheimer's disease. Key research recommendations from the roundtable that NAPA should include:

  • Research on the rate of progression of Alzheimer's Disease, specifically examining sex differences in the transition from normality to early stages of disease to dementia, and from dementia to outcomes.
  • Research on the influence of sex steroids, bioenergetic vulnerabilities, synaptic function, and cognition in the brain as it relates to Alzheimer's disease.
  • Re-examination of existing data for potential sex differences to help define the etiology of Alzheimer's disease and publishing sex-specific results.
  • Research on the differential impact of the caregiving role on men and women and design interventions to provide more effective services

Significant differences exist between men and women who suffer from Alzheimer's disease. Larry Cahill, Ph.D., an associate professor in the Department of Neurobiology and Behavior at the University of California, Irvine, explained in a paper published in Nature Reviews Neuroscience that "Alzheimer's disease-related neurofibrillary pathology associated with abnormally phosphorylated tau protein differs in the hypothalamus of men and women: up to 90 percent of older men show this pathology, whereas it is found in only 8-10 percent of age-matched women." Abnormalities caused by Alzheimer's disease may differ between the sexes and result in different symptoms or behavioral problems for men and women with the disease and may lead to the need for different treatment decisions.

Furthermore, Biology of Sex Differences (BSD) published research on sex differences of certain brain cells and their response to inflammation in the article, "Sex Differences in the Inflammatory Response of Primary Astrocytes to Lippolysaccharide" on July 12, 2011. Sex differences in incidence, age of onset, symptoms or outcome are evident in many neurological and psychiatric disorders. Astrocytes, one of the glial cells of the brain, show sex difference in number of cells, function, and differentiation. Glial cells are involved with physical support for neurons, while others regulate the internal environment of the brain, and provide nutrients to neurons of the brain.

With the increasing number of known sex differences found in research in Alzheimer's disease, SWHR recommends gaining a better understanding of the relationship between pathology and how disease presentation affects men and women differently leading to future sex-specific therapies for the disease.

Through our research recommendations above, SWHR seeks to put before the Advisory Council on Alzheimer's Research, Care, and Services the need to advance more targeted therapies in Alzheimer's disease for both men and women. This will lead to a greater understanding of risk factors for both men and women and more sex specific treatment of cognitive aging, Alzheimer's disease and other dementias.

Should the Advisory Council have any questions or would like more information please contact Eileen Resnick, Director of Scientific Programs at SWHR.

References

Boston University (2008, March 18). One In Six Women, One In Ten Men At Risk For Alzheimer's Disease In Their Lifetime. ScienceDaily. Retrieved November 17, 2011, from http://www.sciencedaily.com/releases/2008/03/080318114824.htm

Society for Women's Health Research (SWHR) (2008, December 20). Alzheimer's Disease: Women Affected More Often Than Men. ScienceDaily. Retrieved November 17, 2011, from http://www.sciencedaily.com/releases/2008/12/081220085057.htm

Santos-Galindo, M., Acaz-Fonseca, E., Bellini, M. J., & Garcia-Segura, L. M. (2011). Sex differences in the inflammatory response of primary astrocytes to lipopolysaccharide. Biological Sex Differences , 2(7),


M. Janicki  |  09-26-2011

Attached is a copy of my testimony/comments for tomorrow's Council meeting. Would appreciate if copies could be made for each Council member.

ATTACHMENT:

National Task Group on Intellectual Disabilities and Dementia Practices
http://www.aadmd.org/ntg

Comments to the Advisory Council on Alzheimer's Research, Care, and Services
September 27, 2011

By Matthew P. Janicki, Ph.D. on behalf of the National Task Group on Intellectual Disabilities and Dementia Practices

I am the co-chair, along with Dr. Seth M. Keller, the President of the American Academy of Developmental Medicine and Dentistry, of the National Task Group on Intellectual Disabilities and Dementia Practices. The National Task Group was created in 2010 by the American Association on Intellectual and Developmental Disabilities (AAIDD), the American Academy of Developmental Medicine and Dentistry (AADMD), and my university center, the Rehabilitation Research and Training Center on Aging and Developmental Disabilities (Lifespan Health and Function) at the University of Illinois at Chicago. Our charge was to examine the state of practices related to dementia and people with lifelong intellectual disabilities, their families and caregivers, and the organizations that support them, and provide commentary on what needs to be done to further services and practices in the United States related to this population. Our charge also was to provide information and recommendations to the Advisory Council formed under the National Alzheimer's Project Act.

To this end, the National Task Group, composed of some 100 administrators, academics, providers, clinicians, families, and advocates, have coalesced with a number of national disability and family based organizations, federal agencies, and provider representatives to create a report on our findings and recommendations. The report, "'My Thinker's Not Working': A National Strategy for Enabling Adults with Intellectual Disabilities Affected By Dementia to Remain In Their Community and Receive Quality Supports " is currently in development and we anticipate having it launched at our next National Task Group meeting in November.

In advance of the release of our Report, it is timely to provide the Advisory Council with some key points from the Report for its use. We have prepared these comments, which I trust the Council members will find informative and helpful:

  1. Alzheimer's disease and other dementias affects adults with lifelong intellectual disabilities in similar ways as it does other people, but sometimes has a more profound impact due to particular risk factors -- including genetics, neurological injury, and deprivation. While mostly the disease follows a typical course, at times some adults are profoundly and aggressively affected. Yet all need the typical types of supports and services usually associated with dementia-capable care. We -- the National Task Group -- believe that adults with intellectual disabilities require the same early and periodic diagnostic services, community education, and community-based supports for themselves, their caregivers, and the organizations responsible for them, as do other adults with dementia in the general population.
  2. Many families are the primary lifetime caregivers for adults with intellectual disabilities and when Alzheimer's disease and dementia occurs, they are particularly affected and need considerable supports. These families not only include parents, but also siblings and other relatives. Many such families are at a loss for providing extensive care at home once dementia becomes progressive and care demands overwhelm them. We -- the National Task Group -- recommend that the nation's providers and state disability authorities invest in increased home-based supports for caregivers who remain the primaries for care for adults affected by dementia.
  3. Many intellectual disabilities provider organizations that are the primary resources for residential and day supports are vexed by the emerging trend of increasing numbers of adults with intellectual disabilities in their services showing signs of early decline and dementia with potentially more demanding care needs. In such cases, staff may be unfamiliar with the signs and symptoms of mild cognitive impairment (MCI) or dementia and may misrepresent or ignore these changes, when early identification could prove beneficial. We -- the National Task Group -- recommend that the nation's providers and state disability authorities invest in increased education and training of personnel with respect to Alzheimer's disease and other dementias and invest in promoting best practices in models of community care of adults with intellectual disabilities affected by dementia.
  4. As it is important to pick up signs of dementia-related cognitive decline early on , we -- the National Task Group -- recommend that the nation's providers and health authorities undertake a program of early identification screening - beginning at age 50 for adults with intellectual disabilities and at age 40 for adults with Down syndrome and others at early risk. We recognize that the Advisory Council may be debating the issue of early identification and screening in the general population. In this regard, the National Task Group has identified a screening instrument, applicable particularly to adults with an intellectual disability, which seems to work as a first-instance screen and recommends adoption of such an instrument by providers and regulatory authorities to begin to identify those adults at risk due to early signs of mild cognitive impairment (MCI) or dementia.
  5. Most adults with a lifelong intellectual disability live in community settings with support from families, friends and service providers. Research has shown that community-based models of care for adults with intellectual disabilities and dementia include community-based options, such as support for living at home or in small group homes, are viable and gaining preference for all individuals affected by Alzheimer's disease and other dementia. Institutionalization of adults with intellectual disabilities and dementia is anathema to the core beliefs and commitments to care practices in the intellectual disabilities field and such institutionalization (via use of long-term care facilities) has been shown to have an adverse affect on lifespan and quality of life. The group home model, where a handful of adults with intellectual disabilities and dementia live in a specialized care home, is becoming more prominent across the world. We -- the National Task Group -- recommend that these models be expanded and an investment be made into enabling provider organizations to develop and maintain such care efforts, including developing more small community-based specialized 'dementia capable' group homes.
  6. Dementia has a devastating impact on all people one way or another -- including people with intellectual disabilities and the many families, friends, and staff involved as parents, siblings, advocates, and caregivers. We -- the National Task Group -- wish to give emphasis to this point and ask the Advisory Council on Alzheimer's Research, Care, and Services to include concerns and considerations for people with lifelong intellectual disabilities in any and all documents, plans, and recommendations to Congress that are part of the work of the Council. The National Task Group stands ready to assist and contribute to such efforts and is pleased that this Council recognizes Alzheimer's disease and other dementias as an ultimate public health issue and a problem to which we collectively need to attend.

C. Mizis  |  09-23-2011

Thank you so much for returning my call. As I mentioned to you during the last 4 years the Latino Alzheimer's and Memory Disorders Alliance is working very hard on the Alzheimer's Awareness in the Latino community in the most important cities of the US as is Los Angeles, New York, Chicago and now DC.

Bilingual and Bi-cultural programs has being offering to more than 15,000 Latino families in the last 2 years, not only by support groups, encourage them to participate in clinical studies, provided the follow up to the individuals who required. The Latino ALzheimer'sAlliance train more than 700 healthcare providers a year on how to be sensitive to cultural and social barriers in the Hispanic community. Sinai Health System, Loyola, Rush Alzheimer's Disease Center, Alivio Clinics, Sinai Health System, Psychology School of Chicago and LA, UCLA, are some of the institutions that received our trainings.

The Chicago Tribune, LA Times,,Univision TV/Radio, La Opinion and Washington Post articles about LAMDA are increasing the number of individuals who are asking to attend our programs. Is for this reason it is very important to represent the Latino/Hispanic Community in the US by participate as a member on the Advisory Council on Alzheimer's Research, Care, and Services meeting held on Tuesday, September 27, 2011.

We appreciate your efforts and consideration on this important journey.

Please see attachments

ATTACHMENT #1:

Para reflexionar sofre la memoria [Available as a separate link: http://aspe.hhs.gov/daltcp/napa/Comments/cmtach13.pdf]

ATTACHMENT #2:

Chicago PSA (Spanish-speaking video file) [Available as a separate link: http://aspe.hhs.gov/daltcp/napa/Comments/cmtach14.wmv]

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