Here we come, that 76 million-strong boomer bubble, moving toward, among other things, Alzheimer’s disease. By age 80, more than 30 percent of us likely will be afflicted. Dr. John Morris, director of the Alzheimer’s Disease Research Center at Washington University, says current thinking is that by the time symptoms are present, it may be too late to give a single drug that will have any meaningful benefit. “We believe amyloid beta protein is a significant factor, but to get any meaningful benefit may require combining different drugs with different targets. The research we are doing at Washington University indicates that the symptomatic phase is an end phase of a disease that begins years, even decades, earlier,” he says.
Sophisticated imaging can visualize amyloid deposits in living people, and spinal fluid can pick up abnormal brain metabolism and characteristic changes in proteins long before the person has symptoms of the disease. Would I want to know if I’m going to have Alzheimer’s? Morris says the drugs should be given to high-risk people before symptoms occur as a prevention strategy. “There is a unique cohort of young people in their 20s and 30s who come from families with the Alzheimer’s inherited trait,” he says. “If their parents carry a bad gene, they have a 50-50 chance of developing the disease. If they have the gene, their chance of Alzheimer’s is 100 percent, usually early onset.”
The center will be a site for an international study on siblings from Alzheimer’s families. They will examine offspring years before the parent started showing symptoms. Siblings without the mutation will serve as controls, and only the ones with the mutation will be treated. None of the participants will know if they are getting the actual drug or a placebo. People with the mutation in their family can volunteer to be in the study or any other Alzheimer’s studies available through the Memory and Aging Project.
Dr. George Grossberg, director of geriatric psychiatry at Saint Louis University School of Medicine, says in the last year there has been more emphasis on starting medication as soon as possible. Early diagnosis also gives families time to do what needs to be done while the patient is still competent, such as financial planning or end-of-life directives. SLU is currently researching immunotherapies that can boost the body’s ability to fight off the disease and counteract changes in the brain. One antibody against amyloid, Bapineuzumab, is in phase-three clinical trials. Grossberg says current symptomatic drugs are useful, particularly if started early and continued over time. “The FDA has recently approved a high-dose Aricept; and both Memantine and the approved transdermal patch Exelon are being developed in higher doses. It may be that we need higher doses to have a measurable effect.”
Another thing Grossberg is adamant about is treating Alzheimer’s families as a whole. The caregivers and other family members must be part of the treatment plan, he says. He urges caregivers to get involved in a stage-specific support group because caregivers need time off.
Rhonda Uhlenbrock, administrator of Chesterfield Garden View Care Center, created a dementia/Alzheimer’s care program that uses the premise that with dementia, if the patient has something purposeful to do, there is less agitation and they are happier. They use fewer psychotropic drugs and don’t need restraints. Specially trained occupational therapists work 10 hours a day, seven days a week with activities appropriate to the stage of the disease.
“Our therapists all wear blue shirts,” says Uhlenbrock. “Patients may not know their names but they know they are there to do things with them, which may include word games in early stage, or going outside and observing nature with late-stage patients. Our patients are not sitting alone in their rooms. They are interacting with other people like them.” When the program proved successful, she took it to the other Garden View Care Centers in O’Fallon and Dougherty Ferry.
With the success of the residential program, the next logical progression was adult day care. People with mild to moderate Alzheimer’s who are in good physical health and living in the community can benefit from structured day care and socialization, especially while adult children are working, Uhlenbrock says. “One of our daycare clients comes twice a week, but she comes to volunteer and always calls ahead,” Uhlenbrock says. “She has her own nametag and comes only because she has a purpose, which is to work with the others.”
Uhlenbrock has this advice for families looking for daycare for a loved one with dementia: “Visit several different facilities and see if people are engaged in activities with other clients. It can really boost self-esteem to hang out with people like you, people who don’t think you are odd. At the same time, have a professional assessment of the dementia patient’s home and living situation. Often you can make minor changes to make it safer and allow the person to stay there longer.”