Fighting the Good Fight
Mar 01, 2019
B. Smith, a former 1970s groundbreaking supermodel, leveraged her celebrity to author a popular cookbook. She became a successful restauranteur and lifestyle expert. Diagnosed with Alzheimer’s in 2013, she and her husband, Dan Gasby, broke new ground in their battle against the disease with the 2016 publication of their book, Before I Forget: Love, Hope, Help and Acceptance in Our Fight Against Alzheimer’s.
When asked how she knew something wasn’t right, Smith said: “I wasn’t the woman I had always been. I didn’t understand what was going on.” At first Smith secretly dealt with the blow that came with her diagnosis. She didn’t even tell her husband. “I didn’t want him to go through what I was going through.”
Looking back, Gabsy said, there were little signs of difference. “And by that, I mean things were forgotten. She started cooking more slowly, and she was not as punctual.” He knew something was wrong when Smith froze during a television interview.
Gasby, who has moved on with his personal life, still serves as Smith’s full-time caregiver. “You have to learn the language of patience, and that’s a tough thing when you’re a type A personality and she is too. It’s frustrating. But when someone you love has Alzheimer’s, you have to realize it’s not the person, it’s the disease.”
Defining the Disease
According to the Alzheimer’s Association, dementia is a general term for a decline in mental ability severe enough to interfere with daily life. Dementia is not a specific disease. It’s an overall term that describes a wide range of symptoms associated with memory decline.
The organization describes Alzheimer’s as the most common form of dementia that accounts for 60 to 80 percent of dementia cases. According to Alz.org, the disease is a progressive brain disorder that damages and eventually destroys brain cells, leading to memory loss and changes in thinking and other brain functions. It usually develops slowly and gradually gets worse as brain function declines and brain cells eventually wither and die. Ultimately, Alzheimer’s is fatal. To date, there is no cure.
The organization also points out that Alzheimer’s is not a normal part of aging, although the greatest known risk factor is increasing age. The majority of people afflicted are 65 and older. “But Alzheimer’s is not just a disease of old age,” according to Alz.org. “Up to five percent of people with the disease have early-onset Alzheimer’s (also known as younger-onset) which often appears when someone is in their 40s or 50s.”
Scientists have identified several “hallmark” brain abnormalities central to the disease:
● Plaques which are microscopic clumps of protein fragment called beta-amyloid.
● Tangles that are twisted microscopic strands of protein tau.
● Connection loss among brain cells responsible for memory, learning, and communication that transmit information from cell to cell.
● Inflammation triggered by the body’s immune system.
● Eventual death of brain cells, leading to severe tissue shrinkage.
Cardiovascular diseases (such as diabetes and high blood pressure), diet, lack of exercise, and family history are among the risk factors for Alzheimer’s. Heart-healthy eating and exercise are two of the best-known ways to lower the risk for developing the disease.
Alzheimer’s Disproportionately Affects Women
Maria Shriver, a journalist, activist, children’s book author, and former first lady of California, is also a strong Alzheimer’s advocate. She calls herself a child of Alzheimer’s because her father had the disease.
“I was doing a women’s conference while I was first lady of California,” she said, “and started programming sessions on caregiving and women, and all of a sudden, I saw these rooms packed. So, I went to the Alzheimer’s Association and I said, ‘let’s do a report on Alzheimer’s – who has it, what it is and how can we communicate it better.’ We found that two-thirds of the brains that had Alzheimer’s were women. That was news to everybody, including the Alzheimer’s Association. Very few people realize that Alzheimer’s predominantly affects women.”
Experts have branded Alzheimer’s as one of the most feared diseases. Others criticize the U.S. government for not doing more to help with research and education. In recent years, Alzheimer’s, though still obscure in many ways, has gotten more attention. Thanks to the efforts of Shriver and the Alzheimer’s Association, here is some of what we now know:
● Alzheimer’s is the sixth leading cause of death in the U.S.
● Every 66 seconds someone is diagnosed with the disease.
● One in three seniors die from the disease and other forms of dementia.
● An estimated 3.2 million women aged 65 and older live with it.
● At age 65, women without Alzheimer’s have more than a 1 in 6 chance of developing the disease during the remainder of their lives, compared with a 1 in 11 chance for men.
Shriver said a woman in her 60s is twice as likely to get Alzheimer’s as breast cancer. “It is also in your brain for 20 years before it is diagnosed,” she said. “Women who are 40, they should pay attention to this. Women who are 50 should start investigating this disease and educating themselves. There are things they can do to perhaps delay it or help to find a cure.”
There are several unproven notions about why women are more susceptible to the disease. One theory targets hormones. Women’s hormones have the capacity to ebb and flow—even surging and crashing during and after pregnancy—with significant hormone loss during perimenopause. With diminished hormone levels, the area around the hippocampus in the brain starts to wither. This causes memory issues which could lead to Alzheimer’s. In contrast, men’s hormone loss is usually a slow, gradual process.
Another speculation is that stress affects women differently than men, which may also lead to the disease. “Every woman goes through this disease differently,” Shriver said. “Now we are looking for therapies that could work for everybody independently.”
Detection and Treatment
Specialists in the field are asking people to start taking tests at home to help detect Alzheimer’s and dementia. The Alzheimer’s memory test, commonly referred to as the SAGE test or the Self-Administered Geocognitive Examination, evaluates thinking abilities and helps physicians know how well the brain is working from year to year. Only a pen and paper are needed to take the test. The SAGE test can be accessed at https://wexnermedical.osu.edu/brain-spine-neuro/memory-disorders/sage.
According to Alz.org, there are five FDA-approved Alzheimer’s drugs that temporarily help with memory and thinking problems in about half of the people who take them. These medications do not treat the underlying causes of Alzheimer’s, however.
There are drugs in development with the intent to modify the disease process by impacting one or more of the wide-ranging brain changes Alzheimer’s causes. These drugs offer the potential to stop or slow disease progression. Experts and researchers in the field believe treatment will require a cocktail of medications aimed at several targets, similar to the state-of-the-art treatments for many cancers and AIDS.
A Call to Action
By 2050, it is predicted the number of people age 65 and older with Alzheimer’s may nearly triple, from 5.2 million today to a projected 13.8 million. Other projections range as high as 18 million.
“Despite increasing momentum in Alzheimer’s research, we still have two main obstacles to overcome,” said Bill Thies, Ph.D, Senior Scientist in Residence, Alzheimer’s Association. “First we need volunteers for clinical trials. Volunteering to participate in a study is one of the greatest ways someone can help move Alzheimer’s research forward. Second, we need a significant increase in federal research funding. Investing in research now will cost our nation far less than the cost of care for the rising number of Americans who will be affected by Alzheimer’s in the coming decades.”