A Patient's Guide to Alzheimer's Disease

The following originally appeared on Guide to Healthcare Schools

Being diagnosed with Alzheimer’s Disease can seem hopeless and frightening, but it is important to know that there are countless people who feel the same way you do. Before you despair, get informed. With the rapidly increasing advancements in research and technology, treatment and care is better than it has ever been, and is still improving. Moreover, with the internet readily available, information and support is all over the web!

With this page alone, you will find links to prominent medical centers leading the research in Alzheimer’s Disease, the latest in Alzheimer’s research, online resources rich with information on the disease, books to help you navigate and cope with the disease, and online communities and forums so you can meet people who understand what you are going through.

Top Medical Centers

• Albany Medical Center: This facility uses state-of-the-art technology for diagnostic procedures to provide Alzheimer’s patients with the most accurate and informed treatment crafted toward each individual’s needs. The center’s partnership with GE Global research allows physicians to use the GE Signa 3.0 Tesla MRI for high-resolution imaging to help identify the causes of Alzheimer’s disease.
• Baylor College of Medicine: This center in Houston, Texas is recognized nationally and internationally for its contributions to the diagnosis and treatment of Alzheimer’s disease. They gather information about each patient over many years, in the hopes that this longitudinal approach will result in better predictive models of disease progression.
• Boston University Medical Center: The Alzheimer’s Disease Clinical and Research Program at Boston University provides compassionate care and resources for Alzheimer’s patients and their families. The ADCRP also conducts clinical studies, and provide interested patients the opportunity to participate in cutting-edge Alzheimer’s research.
• Joseph and Kathleen Bryan Alzheimer’s Disease Research Center: The Bryan ADRC at Duke University uses the latest technology to evaluate Alzheimer patients. Its experienced staff work closely with each patient’s care provider to ensure individual care and treatment.
• Massachusetts Alzheimer’s Disease Research Center: One of the original ADRC in America, this center combines the medical might of MIT and Havard Medical School-affiliated organizations.
• NYU Medical Center: Their Alzheimer’s Disease Center conducts scientific research on brain aging and Alzheimer’s disease. Their mission is to provide patients with the highest quality care using the latest treatment options available.
• Rush University Medical Center: The Rush Alzheimer’s Disease Center located in Chicago, Illinois is dedicated to the diagnosis and care of people with Alzheimer’s Disease. Since 1985, they have served over 5,000 Alzheimer patients and offered more than 800 educational presentations to family caregivers and healthcare professionals.
• The U.S. National Institute of Health’s National Institute on Aging: funds all of the following medical centers to research and treat Alzheimer’s Disease.
• UCSF Memory and Aging Center: San Francisco offers high-quality medical care and informed research for patients with Alzheimer’s Disease. Their website is also a good source of information about the disease and open clinical trials.
• UT Southwestern Medical Center: This center located in Dallas, Texas provides extensive diagnostic evaluations using the most advanced analytic tests from renowned experts in the field. Patient treatments are based upon current research conducted by the center.
• Wein Center for Alzheimer’s Disease and Memory Disorder: Named as one of America’s Best Hospitals for Geriatrics in 2007, 2008, and 2009, this clinic has been at the forefront of Alzheimer’s research for the past ten years. In addition to providing the best of treatment, their specialists are committed to finding a cure.

Latest Research

• Alzforum.org: Bookmark this page to stay current with every advance in Alzheimer’s research. Updated daily, this website will keep you informed.
• Alzheimer’s Patients Could Regain Lost Language Skills: Repetitive Transcranial Magnetic Stimulation (or rTMS) , a non-invasive technique that delivers a series of magnetic pulses to the brain, is shown to improve language comprehension in patients with moderate Alzheimer’s Disease. The study must be replicated, but results are promising for all with neurodegenerative disease.
• Blood test could predict Alzheimer’s Disease: High levels of the protein clusterin in the blood are produced with the plaques in the brain that may cause Alzheimer’s disease. If high levels are found in a blood sample prior to Alzheimer’s symptoms, it could indicate the body has already began to fight the disease.
• Coffee May Help Alzheimer’s: Overly caffeinated mice performed better on short term memory and thinking tests. The potential application for Alzheimer’s patients interest researchers, though evidence is not yet conclusive.
• Depression and Dementia: This study conducted by the University of Massachusetts suggests depression may increase risk for dementia. Scientists caution that relationship is not necessarily causal, and more in-depth studies should be conducted.
• Lucky Molecule Promotes Adult Neuro-genesis: The chemical P7C3 increased integration and survival of hippocampal neurons and memory in mice and rats. P7C3 can cross the blood-brain barrier and appears to be non-toxic, which suggests promising medicinal applications for humans.
• Music Boosts Memory in Alzheimer’s Patients: A small study shows those with dementia more likely to remember lyrics when put to a song. Though a larger study needs to be conducted, a simply jingle may be an effective way to retain information for those with the disease.
• New Method May Help Predict Alzheimer’s: Abnormalities in a PET scan and episodic memory test can predict with high accuracy if patient will develop Alzheimer’s disease within two years. This study is part of the Alzheimer’s Disease Neruo-Imaging Initiative, which collects data from 57 laboratories nation wide.
• The Changing Face of Alzheimer’s Disease: Report shows African Americans and Hispanics are more likely to have Alzheimer’s Disease than their Caucasian counterparts. Unless effective treatment is discovered, 11-16 million Americans will have the disease by 2050.
• Vitamin D may help Depression and Dementia: Recent research shows Depression and Dementia to be linked. Vitamin D may be the key, as elevated Vitamin D levels in blood decreases risk for Alzheimer’s and depression.
• Vitamin E may reduce risk of Alzheimer’s: A Swedish study published in the July 2010 journal for Alzheimer’s disease suggests higher concentrations of all 8 family forms of Vitamin E reduce risk for Alzheimer’s Disease 45-54%. Scientist’s emphasize that the combination of all Vitamin E forms is likely what reduces risk. Vitamin E supplements often only provide one of the family forms of Vitamin E, and if not used in a balanced way, may harm more than help.

Online Resources

• Alzcast.org: This is a source primarily intended for doctors, nurses, and care providers. It provides the latest scientific findings on the disease.
• Alzheimer’s Association: The AA is the leading voluntary health organization involved in care, support, and research. This site has great background information for those new to the disease.
• Alzheimer’s Foundation of America: The AFA contains great links for all affected by the disease. They even have a special site for teens coping with the disease.
• American Health Assistance Foundation: The AHAF is a non-profit committed to Alzheimer’s research. The AHAF offers many useful resources, such as ask-an-expert and memory games to keep your mind sharp.
• Doctor’s Guide: This site provides an extensive list of online resources. Doctor’s Guide is a handy way to start educating yourself about the disease.
• ElderCare Online: This is a great resource for home care-providers. It supplies useful tips on everything from successful communication with Alzheimer patients to finding good long-term insurance.
• Everyday Health: Everyday Health has many active bloggers experienced with Alzheimer’s disease that provide a wide array of information on the disease.
• Fisher Center for Alzheimer’s Research Foundation: The Fisher center provides in-depth information and resources for the family members dealing with the financial and legal effects of Alzheimer’s disease.
• ProHealth: Though it is a commercial site, it offers a number of free resources and basic information on Alzheimer’s disease. Additionally, a large percentage of its profits are donated to scientific research in the field.
• The National Institute on Aging: A comprehensive source of information on Alzheimer’s Disease. The NIA leads the federal effort on aging research.

Book Materials

• A Caregiver’s Guide to Alzheimer’s Disease: 300 Tips for Making Life Easier by Patricia R. Callone. This highly rated guide captures the heart of what it is like to care for a loved one with Alzheimer’s Disease. Highly informative and affirming, it really will make your life easier.
• Alzheimer’s: A Caretaker’s Journal by Marie Fostino. Marie Fostino opens her own private journal to readers affected by Alzheimer’s disease. Written in real-time, this is a very real account of the trials and rewards of caring for her WWII hero father-in-law as his memory deteriorates.
• Alzheimer from the Inside Out by Richard Taylor, is a series of essays from a psychologist who both studied and suffered from the disease. All will find insight from this touching and intelligently written inside account.
• Death in Slow Motion: A Memoir of a Daughter, Her Mother, and the Beast Called Alzheimer’s by Eleanor Cooney. This honest and thoughtful book gets to the heart of the emotional experience of Alzheimer’s disease. If you find yourself struggling with grief, frustration, anger, or exhaustion when dealing with your loved one, this book will remind you that you are not alone.
• Inside Alzheimer’s: How to Hear and Honor Connections with a Person Who has Dementia by Nancy Pearce. Written by a medical social worker of over 20 years, this book contains anecdotes, exercises, resources and tips for those who wish to communicate and connect with people with Alzheimer’s.
• Learning To Speak Alzheimer’s: A Groundbreaking Approach for Everyone Dealing with the Disease by Joanne Koenig Coste. The author’s sensitive, holistic approach to caring for her husband gives new hope to those dealing with the Alzheimer’s in their home. This book will help you remember the person behind the debilitating disease.
• Mayo Clinic on Alzheimer’s Disease by Ronald Peterson. Readers who have read every book on the subject claim this book has been singularly helpful for their families to cope with the disease. If you are looking to increase your understanding the disease, this book is for you.
• The Myth of Alzheimer’s: What You Aren’t Being Told About Today’s Most Dreaded Diagnosis by Peter J. Whitehouse and Daniel George. Written by one of the worlds best known Alzheimer’s expert, this book is a sobering account of the flaws of the medical system. Provocative and well-researched, you’ll definitely want to give this book a read.
• Still Alice by Lisa Genova. Though it is a fictional account of a Doctor diagnosed with early onset Alzheimer’s Disease, Still Alice is a beautifully written and illuminating account of what the disease does to its victims and their families.
• The 36 Hour Day: A Family Guide to Caring for People with Alzheimer’s Disease, Other Dementias, and Memory Loss in Later Life by Nancy L. Mace and Peter V. Rabins. Critics proclaim it a legend, a bible, and admirably realistic, this guide is a must for every family who faces Alzheimer’s Disease.

Online Communities & Forums

• A Place for Mom’s Family: This online forum is for people faced with elder care of any kind. A Place for Mom’s Family is a nice place to extend your social support network outside of the Alzheimer’s community.
• Alzheimer’s Association Online Community: A large online community for patients and caregivers. You can create a profile, post topics, reply to comments, and get the support you need.
• eHealth Alzheimer’s Forum: A forum dedicated to the medical questions you may have about symptoms, treatment, side effects, and emotional issues surrounding Alzheimer’s Disease.
• Healing Well’s Alzheimer’s Forum: A highly viewed collection of posts regarding Alzherimer’s Disease. Viewing this forum’s posts is a nice way to ease into the social world of online communities.
• MDJunction: Looking for support? MDJunction provides countless support forums to share personal stories, advances in science, and what you made for breakfast this morning.
• MedHelp: Have a question you are afraid to ask about Alzheimer’s disease? Use MedHelp’s online question forum to gather preliminary advice before you confront your careprovider.
• NeuroTalk Communities: NeuroTalk’s forums gives you an informal way to post about Alzheimer’s and keep in touch with the latest research.
• Talking Point: This highly active forum provides a space for patients with dementia and their families to talk about their experiences. You can view threads without logging in, but will need to create an account to post.
• The Caring Space: If you care for a loved one and are looking for advice or have an experience you just can’t keep to yourself, consider posting at The Caring Space.
• The Fisher Center Foundation’s Alztalk.org: Blog, post pictures, view events, send messages, chat, and join groups in this forum fit for all ages. The Fisher Foundation provides a fun and safe way to get connected with the Alzheimer community.

Source: http://www.guidetohealthcareschools.com/library/alzheimers-patient#ixzz15jzFgo00