Alzheimer's Club

Geoff Older sits with his wife Sheila at St Thomas' Nursing Home
IN MARCH 2007, Geoff Older and his wife Sheila will have been married for 49 years. Their anniversary should be a happy occasion, when they can look back over the time they have spent together.

But the reality will be quite different. Sadly, Mrs Older is the victim of a terrible disease that has not only robbed her of her memories, but her husband of his wife.

After years of warning signs, Mrs Older, 72, was diagnosed with Alzheimer's disease in 2000, and Mr Older became her carer.

For two-and-a-half years, Mrs Older was prescribed Aricept - a drug which helps to slow down the development of the worst symptoms of the disease.

The National Institute for Clinical Excellence (NICE), the Government's watchdog, has now decided Aricept should no longer be prescribed to sufferers with early Alzheimer's.

Following the announcement, Mr Older, 71, of Holy Barn Close, Kempshott, Basingstoke, decided to speak to The Gazette about the difference the drug made to his family, and his anger and disappointment at the NICE decision.

He said: "I have very strong feelings about NICE. The people who sit on the committee are not the people who have to deal with dementia patients and their carers.

"They acknowledge that the drugs work, but the view they seem to have taken is what's the point in prolonging these people's lives'?"

Mrs Older is now in the very late stages of Alzheimer's and is no longer able to speak, feed or wash herself and does not recognise anybody.

She no longer takes the drug and has moved to St Thomas' Nursing Home in Basingstoke. But Mr Older said that, thanks to Aricept, the family was given time to come to terms with this dreadful disease.

He said: "This drug works and I have experienced it first-hand because it enabled my wife to stay at home for another two-and-a-half years.

This drug works and I have experienced it first-hand because it enabled my wife to stay at home for another two-and-a-half years
Geoff Older

"In 2003, she was taking the drug and attending Thrive, a charity based at Mortimer, which uses gardening to help people with disabilities. She won first prize in a flower show."

He added: "They say it costs £2.50 a day to treat a sufferer, but what NICE doesn't realise is that it is really treating two people - the patient and their carer - by allowing them to live a more normal life.

"If they don't start treating people until the moderate to advanced stage of the disease, that time will be lost. You can't reverse the disease and you can never get that time back."

Speaking movingly about his wife, he said: "She was always such a proud lady. She looked after our home and raised our two children.

"She was a very talented dog judge, breeder and handler, and in 1992 had a top golden retriever bitch at Crufts.

"Looking back, she began to show signs of the disease in the late '90s - she would go shopping and forget she had taken the car and walk home."

He added: "Sheila is not the only one to suffer. It affects me badly on some occasions as well. Until you experience it first-hand, you can never know what it is like."

Mr Older, who is a committee member of the Basingstoke and District branch of the Alzheimer's Society, now hopes to further increase awareness of the disease.

He said: "What people don't realise is that dementia is the second biggest killer in the UK after heart disease. There are 550,000 sufferers and, as the population ages, it will grow worse.

"Anybody could get this terrible disease and it goes beyond memory loss. It does not take prisoners.

"I know we can't do anything for Sheila now, but we had that extra time with her. NICE has taken that away from other families."

Source: Emily-Ann Elliott. ‘Drug gave my wife precious extra time’ This Is Basingstoke, UK (23 Oct 2006) [FullText]

"Leon Thal, Director of the Shiley-Marcos Alzheimer's Disease Research Center at UCSD, heads 70-site consortium funded by National Institutes of Health

The Alzheimer's Disease Cooperative Study (ADCS), a federally established consortium directed by Leon Thal, M.D., Director of the Shiley-Marcos Alzheimer's Disease Research Center at the University of California, San Diego (UCSD) School of Medicine, will receive $52 million over six years to conduct several new clinical trials on Alzheimer's disease, the National Institutes of Health (NIH) announced 17 October 2006. The award is the third renewal of a cooperative agreement between the NIH's National Institute on Aging (NIA) and UC San Diego, which coordinates the consortium of nearly 70 research sites in the United States and Canada.

Thal, Professor and Chair of the Department of Neurosciences at the UCSD School of Medicine, has led the ADCS since its inception in 1991.

"We are very excited to have the ability to test new therapies that may slow the rate of progression of this devastating disease," said Thal. "Given the rapid acquisition of knowledge in the field of Alzheimer's disease, we all remain hopeful that an effective treatment will be found within the next decade."

The purpose of the NIA award is to test drugs for their effectiveness in slowing down the progression or treating the symptoms of AD, as well as to investigate new methods for conducting dementia research.

"We have been able to bring together a larger universe of people studying therapies for Alzheimer's, and I think the group of studies we have developed for this phase of the study reflects new thinking in how to approach the disease," said Thal.

In the next six years funded by this award, researchers will focus on possible therapies aimed at affecting the peptide beta amyloid and the tau protein. Douglas R. Galasko, M.D., a physician scientist with the UCSD Shiley-Marcos ADRC, was one of the early scientists who determined that beta amyloid and tau could be measured in spinal fluid and were useful markers for Alzheimer's. It remains to be seen, however, whether plaques and tangles actually cause the disease or are byproducts of Alzheimer's... "

Source: $52 Million To Lead Alzheimer's Disease Study Received By UCSD. Medical News Today (22 Oct 2006) [Fulltext]

Dear Savvy Senior:
Can you tell me about clinical trials and how to go about finding one? My husband (who's 62) was just diagnosed with early stages of Alzheimer's disease and we are interested in trying anything that may be able to help him. What can you tell me? -- Clinical Candidate

Dear Candidate:

More and more older patients are volunteering for clinical trials to gain access to the latest, and possibly greatest, but not yet on the market treatments for all types of serious illnesses. Here's what you should know.

Savvy Tip: Clinical Trials

A "clinical trial" is the scientific term for a test or research study of a drug, device or medical procedure using people. These tests are done to learn whether a new treatment is safe and if it works. But, keep in mind that these new treatments are also unproven ones, so there may be risks too. Also note that all clinical trials have certain eligibility criteria (age, gender, health status, etc.) that you must meet in order to be accepted, and before taking part in a trial, you'll be asked to sign an informed consent agreement. You can also leave a study at any time you choose. To learn more or to locate an Alzheimer's disease clinical trial near you, visit the Alzheimer's Disease Education and Referral Center at www.nia.nih.gov/alzheimers and click on "Clinical Trials" or call (800) 438-4380.

Things to Know

Before you decide to participate in a clinical trial (of any kind), schedule an appointment with the study's medical team and ask lots of questions. Here are a few to help get you started.

What is the purpose of the study? (You may be surprised to know that many drug or procedural trials are not designed to find a "cure" but to achieve more modest goals, such as to slow down the progression of a disease.)

Is the trial you are considering best for your situation?

What advantages does the trial's experimental treatment offer over existing treatments?

What are the risks? (Some treatments can have side effects that are unpleasant, serious and even life-threatening.)

What kinds of tests and treatments does the study involve, and how often and where they are performed?

Is the experimental treatment in the study being compared with a standard treatment or a placebo? (If you get the placebo, you'll be getting no treatment at all.)

Who's paying for the study? Will you have any costs, and if so, will your insurance plan or Medicare cover the rest? (Sponsors of trials generally pay most of the costs, but not always. Also note that federally funded trials are regulated by the government and insure strict safety guidelines.)

hat if something goes wrong during or after the trial and you need extra medical care? Who pays?

Can you stay on the treatment after the study is completed? If so, who will pay for the treatment?

Find a Study

To learn about the many different types of clinical trials near you, try these resources:

National Institutes of Health: They offer the premier Web resource for locating federally and privately supported clinical studies on a wide range of diseases and conditions. See clinicaltrials.gov.

National Cancer Institute: Provides cancer specific clinical trials. Go to cancertrials.nci.nih.gov or call (800) 422-6237.

National Center for Complementary and Alternative Medicine: To find alternative medicine trials visit www.nccam.nih.gov or call (888) 644-6226.

International Federation of Pharmaceutical Manufacturers & Associations: To locate drug company trials, see ifpma.org.

Source: Clinical Trials: What you Should Know suburbanchicagonews.com (23 Octob 2006) [FullText]

Computer-based tasks aimed at increasing mental activity and enhancing mental function can improve cognition in patients with Alzheimer's disease, serving as an effective addition to medications commonly used to treat the disease. Researchers found that the internet-accessible computer activities were even more successful than classic exercises of mental stimulation commonly used with dementia patients. The findings, from the Fundació ACE, Institut Català de Neurociències Aplicades in Barcelona, Spain, and the University of Pittsburgh School of Medicine, are published in the October issue of the Journal of Neurology, Neurosurgery and Psychiatry.

"The interactive multimedia internet-based system, in combination with the standard pharmacological treatment of Alzheimer's disease, provides for better cognitive function in these patients, demonstrating that they are capable of benefiting from cognitive stimulation, even after the disease has advanced," said Mr. Lluís Tárraga, lead investigator of the study and developer of the IMIS tool.

"This study shows that tasks aimed at increasing or maintaining mental function have a place in treating Alzheimer's alongside pharmacotherapy," said Oscar Lopez, M.D., professor of neurology at the University of Pittsburgh School of Medicine, and a co-author on the study. "While further study is needed, it is encouraging to find that an internet-based program can work for cognitive stimulation, making it easily available and accessible to many people."

The study, conducted at an adult daycare center and referral clinic for community-dwelling persons with dementia in Barcelona, enrolled 46 people who were diagnosed with Alzheimer's disease. All were being treated with cholinesterase inhibitors, the most common pharmacological treatment for Alzheimer's, for at least one year prior to enrolling in the study; all participants remained on the drug for the duration of the study.

Participants were randomized to one of three groups. The first received no cognitive intervention; these participants lived at home and did not participate in the daily activities at the daycare center. The second group participated in an Integrated Psychostimulation Program (IPP), which was a daily program that included 2.5 to 3.5 hours of cognitive stimulation tasks, musical therapy, arts and crafts, physical activity and programs that reinforced instrumental activities of daily living. The third group participated in IPP as well, and used an interactive multimedia internet-based system (IMIS) which allowed them to carry out a variety of different cognitive stimulation tasks at varying levels of difficulty throughout the day. IMIS sessions (20 minutes each) were held three times a week for 24 weeks.

At baseline and after 12 and 24 weeks of treatment, participants were assessed using standard measures of cognitive function and performance including the Alzheimer's Disease Assessment Scale-Cognitive (ADAS-Cog) and the Mini-Mental State Examination (MMSE). After 12 weeks of treatment, the group that received both IPP and IMIS had improved outcome scores on both tests as compared to control; these improvements were maintained at 24 weeks. The group that received only IPP, showed improvement over the control group at 12 weeks, but the effects diminished by 24 weeks.

"While Alzheimer's disease is a progressive degenerative condition, studies have shown that in the early stages, the brain is still able to learn and change. This indicates that increasing brain activity, especially in regards to memory and cognition, may help stave off cognitive loss in people with Alzheimer's," said James T. Becker, Ph.D., professor of psychiatry, neurology and psychology at the University of Pittsburgh, and a co-author on the study.

Acknowledgement: The study was funded through an unrestricted grant from Fundació ACE, Institut Català de Neurociències Aplicades. Co-authors of the study include Mercè Boada, Gemma Modinos, Ana Espinosa, Susana Diego, América Morera, Marina Guitart and Jaume Balcells from Institut Català de Neurociències Aplicades.

Contact: Gloria Kreps, KrepsGA@upmc.edu (412) 647-3555, Fax: (412) 624-3184#
Source: Eurekalert.org

A new U.S. study finds that marijuana may help slow the progression of Alzheimer's disease. Researchers from Ohio State University in Columbus found that marijuana may contain compounds that can slow memory loss associated with Alzheimer's disease.

In their study involving rats, a team led by psychology professor Gary Wenk searched for ways to reduce Alzheimer's-linked brain inflammation.

Wenk was already familiar with data that found that long-term marijuana users had lower rates of Alzheimer's disease than the general population. His team sought to find a compound that might reduce disease-linked brain inflammation but avoid the drug's psychoactive effects.

"We are using a component of marijuana that stimulates the same centers in the brain that marijuana does," Wenk said. The synthetic compound, which is very similar in composition to marijuana, is called WIN-55212-2 (WIN).

Experiments conducted on young and old rats revealed that WIN is "a very effective anti-inflammatory, it reduces brain inflammation," Wenk said.

What makes this discovery special is that this compound can cross the blood-brain barrier, Wenk explained. The results of a special rat "maze test" suggested that WIN "also reversed the memory impairment in the older rats," he said.

Brain inflammation is characteristic of many diseases other than Alzheimer's, including multiple sclerosis, ALS, AIDS, Huntington's and Parkinson's, Wenk noted. "We are beginning to notice that brain inflammation is always in the background as people get older," he said. "Inflammation doesn't cause the disease, it contributes to the pathology," he said.

WIN is not appropriate for use in humans because it still contains substances that may trigger a "high." However, Wenk hopes that some form of this compound might be used to benefit people with neurological diseases.

Source: Alzheimer's Disease :: Marijuana like compound - WIN may slow Alzheimer's disease, memory loss. SpiritIndia.com (20 oct 2006) [FullText]

While the disease is known to physically affect men and women in their 60s and 70s, the mental, emotional and often financial effects can trickle down to the youngest members of a family.

Dee Myers, public awareness and development coordinator for the Greater Maryland Chapter of the Alzheimer's Association, has seen it first-hand. "We had a young boy, about 9, come into the office. He was angry that his grandmother forgot who he was and he didn't understand why she was holding a baby doll all the time. He was embarrassed. And we talked about that."

The 2000 census counted 85,000 families in Maryland affected by Alzheimer's. Eight- to 10,000 of those families are here on the Eastern Shore. The numbers are only expected to go up.

"We can show families and children how to communicate with a grandmother on her level," said Myers. "The love is still there, and the respect is still there."

On Saturday in Salisbury, and Sunday in Ocean City, the Alzheimer's Association will hold Memory Walks to support local programs helping families cope with the disease.

Christopher Potvin, 12, of Snow Hill had a grandparent with Alzheimer's. He was inspired to write an essay about Frank Potvin, his grandfather, in 2004. "It was very difficult to communicate with him. It's hard to talk to someone who doesn't really remember about you very much," he said.

The essay won second place in Optimist Oratorical Competition. Potvin donated a portion of his prize money to the Alzheimer's Association.

Source: Jackie Jennings. Alzheimer's disease touches all family members, even the young. Delmarvanow.com (8 Oct 2006) [FullText]