Peter Wooding (77) is among the 5 million Americans who are facing Alzheimer’s disease, one of the most devastating diagnoses today. Happily married for more than 50 years, Peter and his wife Joanne are not going to sit back and accept the diagnosis. Currently part of a test group for a promising experimental drug treatment, Peter could be among the first to experience a halt to the declines that result from Alzheimer’s.
Peter is one of the 2,700 volunteers from around the world who are currently testing what researchers believe has what it takes to be the first drug to stop Alzheimer’s. Of the test group, 2/3 of the volunteers will receive the drug, and 1/3 will get a placebo. Participants and their families won’t know which one they received until they have participated for 18 months.
Peter’s Initial Diagnosis
Both industrial designers, Peter and Joanne ran their own design firm for nearly 40 years. Peter also served as president of the Industrial Designers Society of America (IDSA), lectured abroad frequently, and was a faculty member at Rhode Island School of Design. Peter was sharp and an expert in his field, until changes in his memory began taking place in the early 2000’s. It began when he was having trouble keeping track of deadlines for projects and what was discussed at meetings, and Joanne felt that it was time for him to get checked.
To learn of his diagnosis, the couple took advantage of a study in which Medicare covered the cost of brain scans of older people to check for amyloid plaques, the protein that is the hallmark of Alzheimer’s. In the scans, it was undeniable–Peter had Alzheimer’s. Peter described what he saw in the scan as “a white cloud that covered my brain.”
Participating in the study at Butler University
Several vaccine trials led by large drug companies, such as Pfizer, Johnson & Johnson, and Eli Lilly have failed. Although scientists are aware that amyloid, a protein made by cells in the brain, seemed to build up abnormally in the brains of people with the disease, drugs to inhibit it in those with Alzheimer’s haven’t made much of a difference. In looking at past failures, scientists are beginning to realize that (1) some of the people in the studies showed signs of dementia but may not have had Alzheimer’s or amyloid plaques at all, and (2) the drugs may have been given too late in the disease and in doses that were too low.
Scientists also now know that while autopsy studies have shown that amyloid plaques are a common feature of people with Alzheimer’s, not everyone with amyloid deposits in the brain necessarily develops the disease. Some people have a natural ability to keep the plaques from building up or are able to make less amyloid, so the protein doesn’t aggregate into toxic clumps.
Taking all these things into consideration, Dr. Stephen Salloway, the Woodings’ doctor and the director of neurology and the Memory and Aging Program at Butler is testing a new vaccine, and it could prove to be promising. Developed by Biogen and Neurimmune, the vaccine came from older people who either did not develop Alzheimer’s or showed much slower rates of cognitive decline than average Alzheimer’s patients did. “Something was retarding the Alzheimer’s or protecting against Alzheimer’s in these older people,” says Salloway.
Peter’s Participation in the Trial
Peter wasn’t going down without a fight, which is why he volunteered for the study. Being in the early stages of Alzheimer’s made him a perfect candidate. As mentioned previously, Peter and the other participants agreed to receive either injections of the drug or a placebo once a month for a year and a half. After that, he is guaranteed to receive the drug for two more years. It won’t be until 2020, when all the people in the study have completed their injections, that the Woodings and their doctor will learn whether he received the drug or a placebo.
So far, Peter has received 16 injections. Even if Peter is getting the placebo, the Woodings recognize that they are fortunate to have the opportunity to test a potentially promising drug. Peter is a great example of why early diagnosis of Alzheimer’s is extremely important. We’ll keep you updated in future articles about Peter’s progress, and any other promising treatments for Alzheimer’s and other forms of dementia.
Benefits of Early Diagnosis
Hopefully, the vaccine being tested becomes the breakthrough needed to slow or stop Alzheimer’s in the future. As you can see, once people with Alzheimer’s find out that they have the disease, they may be able to take advantage of the benefits to early diagnosis, even though no treatment or cure currently exists. For instance, those who learn that they are likely to have Alzheimer’s could enroll in clinical trials testing possible new treatments. Another potential benefit could be that it will help those with Alzheimer’s work with their family, caregivers, and an experienced elder law attorney, such as myself, to plan for their future and their loved ones.
Medicaid Planning for Alzheimer’s and Other Types of Dementia
Alzheimer’s disease is the most challenging health and social care challenge of our generation, and a diagnosis of the disease is certainly life-changing. When it comes to legal planning for long-term care, generally the earlier someone with dementia plans, the better the result. But it is important to know that it’s never too late to begin the process of Long-term Care Planning, also called Life Care Planning and Medicaid Asset Protection Planning.
Medicaid planning can even be started by an adult child acting as agent under a properly-drafted Power of Attorney, and even if your loved one is already in a nursing home or receiving other long-term care services. If you have a loved one who is suffering from Alzheimer’s or any other type of dementia, please feel free to call us for an initial consultation:
Fairfax Medicaid Planning: 703-691-1888
Fredericksburg Medicaid Planning: 540-479-1435
Rockville Medicaid Planning: 301-519-8041
DC Medicaid Planning: 202-587-2797
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About Evan H Farr, CELA, CAP
