By John Morgan, Spotlight Health
With medical adviser Stephen A. Shoop, M.D.

Losing a loved one to Alzheimer's disease is never easy. But for former Designing Women actress Jean Smart the loss of her father last year to the devastating neurological disease was particularly painful.

"My father was my hero," says Smart. "I can't say enough about him and everything he did for me and my family. I have three siblings and we're very close and going through my father's illness only made us closer."

To help other families, Smart was recently the special guest speaker at the Alzheimer's Association's Rita Hayworth Gala. The annual event was created by Princess Yasmin Aga Khan as a tribute to her mother, Hollywood screen legend Rita Hayworth who died suffering with Alzheimer's disease in 1987. The gala raised $1.2 million to find a cure for the disease.

Smart shared her family's experience with the audience. As Smart's family drew closer together to deal with Alzheimer's, her father retreated further and further away.

"It was very painful for me and my family," says the Emmy-winning Smart. "But everyone always says how horrible Alzheimer's is for the family or the caregiver, but there is a huge misconception that the patient is sort of blissful, happy and childlike and doesn't suffer. I find that not to be true at all, especially in the early stages of the disease. Alzheimer's is very cruel for the patient."

Alzheimer's disease is a progressive degenerative brain disease that impairs memory and the ability to recognize loved ones and eventually prevents a person from carrying on even the simplest tasks of daily living.  According to the Alzheimer's Association, more than 4.5 million Americans currently have the disease. 

But some experts believe the number of people with Alzheimer's is severely underestimated.

"We only see the tip of the iceberg when it comes to Alzheimer's disease," states Zaven Khachaturian, senior science advisor to the Alzheimer's Association and former director of the office of Alzheimer's research at the National Institutes of Health. "My personal guess is closer to the number afflicted is closer to 6 million."

And the problem is growing worse.

Unforgettable epidemic

Since 1980, the number of people with Alzheimer's has more than doubled. And it is estimated that by 2050, somewhere between 11 million and 16 million people could have Alzheimer's.

"The Baby Boomer generation is right now losing their parents to this disease," Smart notes. "But soon they will really have to think about themselves. We are going to have a huge aging population and without a cure or certainly more effective treatments the healthcare system will be overwhelmed."

Part of the problem is that the prevalence of Alzheimer's increases with age.  According to Khachaturian, if you're 60, you have a 4%-5% risk. If you're 80, the risk is close to 40%. If you're 90, the risk increases to more than 60%.

"The majority of Baby Boomers are going to live into their 90s," Khachaturian says. "So the numbers will dramatically increase. We're essentially outliving our bodies, and it is why dementia was not as prevalent in the past because they didn't live as long as we do."

But Khachaturian says the bigger problem may be the duration of disability - or how long a person is disabled and needs to be cared for by family or the healthcare system.

"This is the big problem that people overlook," Khachaturian states. "People with Alzheimer's will be disabled for 30-40 years. The economic cost is very significant."

Currently the national Institute on Aging estimates that the annual cost of Alzheimer's care is at least $100 billion.

The strategy to prevent a healthcare catastrophe is to reduce the number of people who get Alzheimer's.  Khachaturian says that this entails a three pronged approach starting with understanding the genetics of Alzheimer's.  The second goal is to reduce the duration of the disability so that people only get Alzheimer's much later in life. The third goal is to reduce the cost of caring of the disease.

Until a cure can be found, patients need to be aware of early symptoms and seek treatment as soon as possible.

"People who don't have Alzheimer's in their family history should not discount it," Smart cautions. "My father's family did not have the disease. My father had a very active mind, was physically healthy and did the NY Times crossword puzzle every day. You have to be aware."

Treatment options

Warning signs of Alzheimer's can include:

• Memory loss
• Difficulty performing familiar tasks
• Language problems - difficulty finding words
• Disorientation
• Poor or impaired judgment
• Problems with abstract thinking
• Misplacing things
• Mood, behavior, or personality changes
• Loss of initiative

"There's a glib explanation that if you can't remember where you left your keys, it's not Alzheimer's," Smart says. "If you can't remember what a key does, it's Alzheimer's. That's extremely simplistic because if you have reached the point where you don't know what a key is for, then you are not in the earlier stages of the disease. And that does a huge disservice to getting an early diagnosis."

Early diagnosis is important to prolonging a higher quality of life. There is no definitive test to diagnosis Alzheimer's. Instead doctors use a wide range of diagnostics from medical history and physical examination to brains scans and psychological tests.

Once a diagnosis is made doctors can treat Alzheimer's with a first generation class of medications called cholinesterase inhibitors. These medications, one of which Smart's father took, stop the breakdown of the neurotransmitter acetylcholine which helps slow the progress of the disease.

A recent addition to the treatment arsenal is a drug that regulates the amount of calcium within the nerve cell. Too much calcium is destructive to a nerve cell.

"All of these are called symptomatic treatments - meaning they are designed to slow down the deterioration of the symptoms," Khachaturian says. "They do not change the course of the disease or the disease process. The real payoff will be drugs that are neuro-protective or restorative. They are in the pipeline now and will restore the ability of the nerve cell or prevent it from dying."

But while these neuro-protective drugs are not immediately available, Khachaturian is quick to point that out that tremendous progress has been made in the last 15 years when there were no effective treatments for Alzheimer's.

"The good news is scientists are closing in on figuring out some of the mechanisms involved and perhaps in finding a cure soon," Smart states. "So now more than ever is the time for people to do whatever they can to help the Alzheimer's Association. It really will support extremely important research. I believe a cure is going to happen soon - we just need the funds to support the research."

Spotlight Health is the leading creator of celebrity-featured health-issue awareness campaigns, connecting consumers with impassioned celebrities whose personal health battles can open eyes, dispel myths and change lives. Spotlight Health helps sufferers and caregivers meet the challenges of difficult health circumstances with understandable, in-depth medical information, compassionate support and the inspiration needed to make informed healthcare choices.

Created: 6/24/2004  -  John Morgan & Stephen A. Shoop, M.D.
Reviewed: 6/24/2004  -  Donnica Moore, M.D.