To read the newsletter in its entirety, click here for the print version.
In this edition:
- From the Executive Director
- One Walker's Story
- Memories in the Making® on the Move
- About Research by Sam Brinkman, Ph.D.
- Reframing Dementia: Strategies to Find Hope and Strength with Audette Rackley, MS, CCC/SLP
- Advocacy Update
- The Hispanic Family and Alzheimer's Disease (available in English and Español)
- Education Calendar
- Memory Walk®
In conjunction with the annual Advocacy Forum last March, 2010 Alzheimer’s Disease Facts and Figures was released by our national office of the Alzheimer’s Association. The leading statistical resource for United States data related to Alzheimer’s disease, this annual publication provides a summary of current knowledge about Alzheimer’s disease, including sections on prevalence, mortality, care giving and costs of care and services. This year’s edition includes a focus on race, ethnicity and Alzheimer’s disease. The entire publication can be accessed here.
2010 Alzheimer’s Disease Facts and Figures tells us there are now more than 5.3 million people in the United States living with Alzheimer’s disease, the most common cause of dementia. This figure includes 5.1 million people over the age of 65 and 200,000 under age 65 with early onset Alzheimer’s disease. Every 70 seconds, someone in America develops Alzheimer’s. By mid-century, someone will develop the disease every 33 seconds if we do not find a way to slow it down.
The prevalence of individuals and families affected by Alzheimer’s disease only renews our commitment to the mission of the Alzheimer’s Association - to advance research and help people. Our chapter staff and volunteers work diligently everyday to support the thousands in our communities who call us, participate in our support groups, attend our education programs, check-out materials from our libraries, or seek our help in other ways. We are pleased to share this latest edition of our newsletter which reflects highlights of our recent work and upcoming activities related to advocacy, education and fund raising.
You will find a lot of useful information in this newsletter. Take a close look at the array of topics, dates and locations of the multitude of education programs that will be offered in coming months. Education is still one of the best weapons we have in this battle against Alzheimer’s disease, so arm yourself by learning what you can! Don’t miss ways you may support Alzheimer research in the article by Dr. Sam Brinkman. Inform yourself about our national advocacy priorities, outlined in the article about this year’s Advocacy Forum.
New sessions of our Early Stage Support Groups are scheduled for late summer, so contact the office closest to you if you are interested in learning more. A new session of our Early Stage Support Group will be offered in Abilene, Fort Worth, Waco and for the first time this summer, in Wichita Falls! As our offices are more frequently contacted by those newly diagnosed, our Early Stage Support Groups are increasingly meeting a need in our communities.
Plans are gearing up across our chapter for our seven Memory Walks in late summer and early fall. You may register online today and begin to build your team. Across the country, Memory Walk® is the signature event of the Alzheimer’s Association. The walks offer opportunities in our local communities to raise financial support for our work and awareness about Alzheimer’s and the urgency of our mission, especially in light of the growing prevalence.
I hope you will read this newsletter cover to cover and when you are through, peruse our website for the most up-to-date information locally and nationally. Be sure to click on 2010 Alzheimer’s Disease Facts and Figures to learn more about Alzheimer’s disease and its effect on so many in our country.
Thank you for financially supporting the Alzheimer’s Association at Memory Walk, through a memorial gift or in any way you can. Please consider putting the Alzheimer’s Association in your will or other long range financial planning. We rely on your generosity and commitment to our mission. Now dust off those walking shoes and plan to connect with good friends and committed individuals in this battle against Alzheimer’s disease this September or October at the Memory Walk® closest to you!
My Mom, Martha Andrew, passed away August 21, 2009, from the effects of Alzheimer's disease. On September 4, our Memory Walk Team - M.O.M. / Memories of Martha was created on line. By Walk day on September 12 last year in Wichita Falls, M.O.M. had collected $2,000 of our final total $2,942 in donations. We discussed participating in the Walk prior to Mom's passing. After her long journey was over it seemed like something we definitely needed to do.
My mom had 3 primary personal caregivers before she passed away. Two of her caregivers worked with Mom at Haggar Slacks years earlier and the third also knew Mom prior to becoming her caregiver. Two of her caregivers walked with us at Memory Walk. We wondered, however, if one of them would be able to walk with us due to a flair-up with a heart condition. As it turns out she did walk. Even though it was available for her, she refused to use a wheelchair, insisting on walking the entire way.
My sister drove 115 miles on the morning of Memory Walk to participate with us. Sis cared for mom on alternating weekends and on many, many other occasions. My son, his wife and their precious daughter participated as well. My granddaughter was one of a number of "stroller" participants at the Walk.
Solaris Healthcare provided home health care for Mom before she passed away. Solaris employees and their family members also became team members and participated in Memory Walk with us.
Alzheimer's affected our entire family and Mom's journey showed me what a devastating disease it is. We were very fortunate. Mom was able to remain in her home and had many "earthly angels," her caregivers who loved her and cared for her with dignity to the very end. Memory Walk reminded me that she was not alone in her struggle with this disease. Individuals, loved ones, family members, caregivers - all directly or indirectly affected by this disease - were participating in this wonderful event.
After Memory Walk '09 we agreed that what started out as a "one time" way to honor Mom's memory is going to be an annual event for us. Our wish is that the efforts of Team M.O.M. / Memories of Martha '09 would lead to a cure for Alzheimer's. Our realization is, at least for now, that somehow our efforts help raise awareness of the disease and help other individuals affected by this disease. Hopefully, we can do even more in 2010.
If you would like to participate, click here to find the nearest walk location.
In this time of great change in the financial health of our country and of much of Europe, and with fundamental changes in the delivery of health care services in the United States, it becomes increasingly imperative that research into Alzheimer’s disease and related disorders be supported.
What is the purpose of research?
The purpose of research is to acquire knowledge and understanding of nature so that people’s lives can be improved. With respect to Alzheimer research, the long-term goal is to eliminate Alzheimer’s disease from our lives. More immediate goals are to develop preventative strategies, diagnose earlier and more accurately, improve quality of life, stop the progressive worsening of cognitive deficits and restore lost abilities.
How is research accomplished?
In general, research is anchored in theory. A theory is an organized attempt to explain how things work. Different aspects of the theory are then tested out through research studies. In each study, results may turn out as predicted, or results may be different from what was expected. Either way, the scientist learns something new and a body of knowledge develops. When research results are different from what was expected, the theory is revised or updated in light of new information. Research studies are often replicated, or repeated in another setting by another scientific team to be certain that the results are trustworthy. For example, when Dr. Alzheimer described the microscopic changes in the brain of his deceased patient Auguste D., he reported interesting plaques but knew little about them or their role in the disease. Over the next 70 years, researchers were able to understand what the plaques consisted of chemically and how the plaques related to neurofibrillary tangles (another observation Dr. Alzheimer had reported) and to the progression of the disease. The past decade has seen the development of the technology to “visualize” the plaques in a living person with little risk to the person. Additionally, understanding the chemical make-up of the plaques has led many researchers to develop medications which would interfere with the development of the plaques in the hope that these medications would stop the progression or prevent the development of Alzheimer’s disease. More recently, as drug trials have not been as successful as hoped, these researchers are turning their attention to certain chemical structures that develop before the beta-amyloid and the plaques develop. In the meantime, other researchers have consistently looked to factors other than this beta-amyloid process to understand why Alzheimer’s disease develops (genetic factors, vascular factors, etc.).
Why is research so expensive?
The two greatest reasons for the expense of research are the costs of educating, training and building a research team, and the costs of equipment and facilities. A research team is built slowly over time, as scientists with common interests but differing backgrounds work together on complex projects. The expenditures for clinical research are even greater because of the expenses in finding, recruiting, diagnosing and studying individuals whose symptoms are continuously changing. The most informative clinical studies are often longitudinal studies (such as the nun studies that taught us so much about Alzheimer’s disease), systematic evaluations of a group of individuals over a long period of time. Longitudinal studies are resource-intensive and consequently expensive, but they provide a wealth of important information.
Who pays for this research?
American taxpayers pay for much of it. While the tax burden at times seems rather heavy, Americans are very charitable when they see that their tax dollars are used wisely and for a good cause. Last year’s budget for Alzheimer research at the National Institutes of Health (NIH) was about $630 million. Private industry also pays for Alzheimer research. The pharmaceutical industry (drug research) has invested a great deal of money in the development and evaluation of medications in this area. The exact amount of their contribution to research is not known. Other areas of private industry include companies which are developing new neuroimaging techniques, biological markers and screening/diagnostic techniques. The Alzheimer’s Association contributes substantially to research in this area. Since 1982, nationally the Association has contributed over $200 million to research. Funds raised by our chapter contribute to this national research support.
What can I do to help with research?
Donate, advocate, participate. Be informed, especially through the Alzheimer Association, local education programs, your library, good-quality websites (begin with our chapter website) and health news outlets. Support advocacy efforts at local, state and federal levels. Contact your senator and representative and encourage their support for Alzheimer research. To learn more about clinical trials in your area, contact the National Institute of Aging Alzheimer’s Disease Education and Referral Center (ADEAR) at 1-800-438-4380 or go to www.nia.nih.gov/alzheimers. Another helpful site for clinical trial information is http://www.clinicaltrials.gov/. Note that one hundred percent of any designated contribution sent to our chapter for research is passed on to our national office where it can best be directed to promising and innovative research projects worldwide.
Do you have a family member showing signs of dementia?
Research is beginning to uncover the impact of Alzheimer’s disease among Hispanic populations. Hispanics are about 1.5 times more likely to develop Alzheimer’s and dementia than whites but are less likely than whites to have a diagnosis. Hispanics show high risk factors for vascular disease - mainly diabetes, high blood pressure and high cholesterol, which also may be risk factors for Alzheimer’s and stroke-related dementia. Hispanics are the fastest-growing population in the United States, and this population’s life expectancy will increase to age 87 by 2050, surpassing all other ethnic groups. The number of Hispanic elders with Alzheimer's and related dementias could increase more that six-fold in the next few decades.
Why does a family need help with caregiving?
As Alzheimer’s disease progresses, it changes a person’s behavior and ability to do everyday tasks. Caregiving becomes more difficult and more stressful. Caregivers may even neglect their own physical and emotional health. The Alzheimer’s Association has resources to help families better understand and cope with the changes this disease brings. This spring our chapter started a new support group for Spanish speaking caregivers, which is the “Grupo de Apoyo Para La Familia Hispana.” This support group is for family and friends of individuals with dementia and provides a caring non-judgmental atmosphere with others who have experienced similar life challenges. It is offered free of charge, and all information which is shared is held in strict confidence.
The meeting is on the 2nd Friday of each month at 10:00 am at the James L. West Alzheimer’s Center, 1111 Summit Avenue in Fort Worth. The facilitator is Trish Galvez, who has had considerable experience working with Hispanic families. For further information please call 817.460.7001 or 1.800.272.3900. Also, our chapter’s website contains a rich resource of information in both Spanish and English concerning Alzheimer’s disease, caregiving and science surrounding the disease.
¿Tiene usted algún miembro de la familia que muestra indicios de demencia?
Las investigaciones están empezando a descubrir el impacto de la enfermedad de Alzheimer en la población hispana. Es 1.5 veces más probable que las personas hispanas desarrollen las enfermedades de Alzheimer y de demencia que las personas blancas, pero es menos probable que se les diagnostique que a las personas blancas. Los hispanos tienen un alto índice de riesgo para las enfermedades vasculares- especialmente la diabetes, la alta presión y el colesterol alto, que también son factores que representan un riesgo para Alzheimer y demencia causada por un derrame cerebral. La población hispana es la que está creciendo más rápidamente en los Estados Unidos, y su expectativa de vida aumentará a los 87 años para el año 2050, sobrepasando a todos los demás grupos étnicos. El número de ancianos hispanos con Alzheimer y demencias relacionadas podría aumentar más de seis veces en las próximas décadas.
¿Por qué necesita una familia ayuda para proveer cuidado?
Según progresa la enfermedad de Alzheimer, ésta va cambiando el comportamiento de la persona y su habilidad para llevar acabo tareas de cada día. Proveer cuidado se convierte en algo cada vez más difícil y que causa más estrés. Las personas que proveen el cuidado pueden llegar a descuidar su propia salud física y emocional. La Asociación de Alzheimer tiene recursos para ayudar a que las familias entiendan mejor y puedan enfrentarse a los cambios que trae esta enfermedad. Esta primavera, el capítulo de nuestra organización creó un nuevo grupo de apoyo para personas que proveen cuidado y son hispanohablantes, que es el “Grupo de Apoyo Para La Familia Hispana.” Este grupo de apoyo es para familiares y amigos de individuos con demencia y provee una atmósfera de cuidado sin críticas, junto con otras personas que han experimentado retos similares en su vida. Este servicio se ofrece sin costo alguno, y toda la información que se comparte se mantiene en la más estricta confidencia.
Las reuniones se llevan a cabo el segundo viernes de cada mes, a las 10:00 am en el centro James L. West Alzheimer’s Center, situado en 1111 Summit Avenue en Fort Worth. La organizadora es Trish Galvez, quien ha tenido una experiencia considerable trabajando con familias hispanas. Para más información, favor de llamar al 817.460.7001 o al 1.800.272.3900. El sitio web de nuestro capítulo es una gran fuente de información sobre la enfermedad de Alzheimer, con información sobre cómo proveer cuidado e información sobre los aspectos científicos relacionados con la enfermedad, en inglés y en español.