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Alzheimer's disease: Coping with a frightening diagnosis

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September 24th, 2013
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A recent international survey in five countries showed that for most people, Alzheimer’s disease was the second most significant health concern after cancer. About 25 percent listed it as their number one fear.

This increasingly prevalent disease is the most common of all dementia-related illnesses. “About 5.1 million people in the U.S. are affected by Alzheimer’s disease,” says Betsy Moody, M.D., medical director at Linden Ponds, an Erickson Living community in Hingham, Mass. “In people age 85 and older, 30% to 40% are thought to have it.”

People who are affected progress through three stages—a preclinical stage with no symptoms; mild cognitive impairment in which some loss of memory is apparent; and the final stages with significant loss of daily functioning.

Dealing with the diagnosis

“A new diagnosis can be a shock for the patient and their caregivers,” says Jed Levine, executive vice president and director of programs and services at the New York City Chapter of the Alzheimer’s Association. “People may go into denial for a period of time, but that’s not necessarily unhealthy. It gives them time to get used to the diagnosis.

“If denial persists, however, it interferes with the ability to be able to reach out for help,” Levine adds.

“With newly diagnosed patients and caregivers, I explain the disease process thoroughly,” Moody says. “We discuss their support network and talk about driving and home safety. We link them to community resources and refer them to the local Alzheimer’s Association.”

Lack of effective treatments

“If we could find a disease modifier that could delay the onset by even one year, there would be 9.2 million fewer cases of Alzheimer’s disease by the year 2050,” Moody says.

“Alzheimer’s disease is very complicated from a pathophysiology standpoint,” she explains. “Scientists know that amyloid plaques build up between nerve cells and tangles of a protein called tau accumulate within nerve cells. Why this happens or how it affects memory and functioning are not yet known.”

The direction of Alzheimer’s research has shifted over the years. “Much of the earlier research was focused on amyloid but results didn’t pan out as we had hoped,” Moody explains. “Studies about vitamin E and other antioxidants weren’t shown to affect the disease. Now there’s more of a focus on molecular and genetic factors. Researchers are investigating vaccines and other strategies that may impact the disease process itself.”

Researchers have made some progress in early detection of Alzheimer’s, including pinpointing a gene responsible for it. “They’ve also developed imaging techniques for amyloid detection, and tau levels can be detected by doing spinal taps,” Moody says.

There are some medicines available. “Some drugs that are on the market today may slow down memory loss for some people, but they don’t impact the actual disease progression,” Moody says.

One possible preventive and treatment modality has shown promise. “Some evidence shows that physical activity might prevent Alzheimer’s disease and possibly slow the progression for people with mild cognitive impairment,” Moody says. “Exercise on the order of 30 minutes five times a week has a positive effect although we don’t yet know why. This is great news because exercise is good for your physical and psychological health. And it’s free.

Caring for the caregiver

“Caregivers need to recognize the profound impact it can have on them when a relative has Alzheimer’s disease,” Levine says. “It can take a tremendous toll on your health and you are at a greater risk for stress-related medical problems and depression.”

You are not being selfish if you take good care of yourself. “It’s like being on an airplane—you need to give yourself the oxygen mask before you can help someone else,” Levine says.

“Although many people think they can handle it alone, research shows that patients and caregivers stay healthier when they get support early on in the disease process,” Levine says. “And it helps them engage with others and live a full life for as long as possible.”

Planning for the future

“The Alzheimer’s Association has comprehensive online information and tools to help at alz.org as well as a 24-hour help line,” Levine says. “Talking with a knowledgeable specialist can reduce your anxiety and help you prioritize your needs.

“While there’s a lot of planning involved, it’s also very important to live in the present,” Levine says. “Enjoy the connections and the relationship you have now with your friend or relative.”


Help for anyone, at any time, in over 170 languages

The Alzheimer’s Association’s free 24/7 helpline offers information about:

• Understanding memory loss, dementia and Alzheimer’s

• Medications and other treatment options

• General information about aging and brain health

• Skills to provide quality care and to find the best care from professionals

• Legal, financial and living-arrangement decisions

Master’s level clinicians are available to support you if you are in a crisis or have to make difficult decisions. They can also link you with services and support in your community.

1-800-272-3900

TDD: 1-866-403-3073

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