National Alzheimer’s push puts disease on the map

By Sondra L. Shapiro

We were assigned to the Alzheimer’s section at lunch time. I was at the other end of the room helping to feed a patient when I heard a commotion. The gentleman my husband, David, was assigned to feed was writhing on the floor, choking. I immediately recognized the man as the grandfather of one of my friends. I hadn’t even known he had the disease, let alone was in the last stages where swallowing is often difficult, if not impossible.

It was a horrible scene and one that has stayed with us for years.

That Christmas incident was the first direct contact I had had with an Alzheimer’s sufferer. Sadly, it hasn’t been the last. Through the years I have met dozens of the afflicted and have been honored to interview the family members charged with their care. Two come to mind:

•The wife who still got her husband up and meticulously dressed (the way he always liked it) everyday to take a walk. The love and adoration she had for this shell of a man was as inspiring as it was sadly touching.

•The friend who gave up her full-time job to assume the care of her mother-in-law, a last stage Alzheimer’s sufferer. The older women moved in with the family, who still had young children living at home. Near the end, my friend slept in the woman’s room where she was frequently awakened by her mother-in-law’s blood curdling screams.

These two stories are not anomalies; far from it. They aptly depict the insidious assault on the brain of Alzheimer’s sufferers and the seemingly super-human dedication of those who care for the afflicted. There are seven stages of this disease, according to the Alzheimer’s Association — going from the first stage where there is no discernable memory loss, to the final stage when there is severe cognitive decline and sufferers lose the ability to respond to their environment, to carry on a conversation and, eventually, to control movement.

The disease is the sixth leading killer and there is no cure or sufficient treatment. Nor is there adequate support for caregivers. There are some minor treatments that temporarily ease some symptoms.

There are 5.4 million Alzheimer’s suffers in the United States and without research or breakthrough treatment, those numbers are predicted to rise to 16 million by 2050.

So, it will surprise many to learn that there hasn’t been a real national effort in terms of funding and support until now. Last month the Obama administration launched a national strategy that sets a deadline of 2025 to find sufficient treatment or ways to at least stall the disease.

The National Alzheimer’s Plan, which involves collaboration between government and non-profit and private partners, will focus on future treatments, early diagnosis and provide resources to help families care for loved-ones at home.

The campaign kicked off by creating a one-stop website, www.alzheimers.gov, that offers information and suggests where individuals can get help in their own communities.

At a recent meeting between Alzheimer’s researchers and the National Institutes of Health (NIH), it was recommended that the testing of potential therapies should begin prior to evidence of full-blown Alzheimer’s symptoms, when it has been too late to make a difference.

“We need to figure out exactly where is the best window of opportunity to battle back Alzheimer’s,” Dr. Francis Collins, director of the NIH, told scientists at the Alzheimer’s Research Summit, using as an example that cardiologists don’t test cholesterol-lowering drugs on people already near death from heart failure.

Dr. Reisa Sperling of Harvard Medical School told those gathered at the meeting that Alzheimer’s quietly brews in the brain, killing off cells, for 10 years or more before symptoms appear.

The Alzheimer’s Plan will include:

•A planned $8 million study — funded by the NIH — of an insulin nasal spray that pilot-testing suggests could help treat/forestall/prevent Alzheimer’s. It’s based on growing evidence that diabetes and Alzheimer’s are related, damaging how the brain is fueled. The insulin nasal spray can reach the brain without affecting blood-sugar levels.

•The NIH is contributing $16 million to an international study of whether a treatment targeting amyloid, Alzheimer’s hallmark brain plaque, could prevent the disease. The study will include people at highest risk genetically of the disease, including Americans and a unique group in Colombia.

•The government will begin offering training to doctors and other health providers on the best ways to care for patients and their families.

This effort is long overdue. Until now, funding for and attention to Alzheimer’s disease has been mostly overlooked as dozens of other life-threatening afflictions have received attention. There is a long way to go to catch up and the challenge will be greater because of it. The population is getting older and the disease seems to affect every family at some level. Everyone I know seems to have a story about a family member, friend or co-worker caring for a sick family member.

The Alzheimer’s Plan should be a catalyst to combat a disease that has too many sad stories attached to it.