The first sign of a problem was when Walt Stanford* had trouble remembering names of business contacts. At first he and his wife, Jan*, attributed the lapses to advancing age. Then one day, he came home from a week on the road and reported that his car kept stopping for no reason. A check-up at the auto shop showed the car had no problems. The diagnosis, instead, was driver error, a shocking conclusion for someone who practically lived in his car and for whom driving was second nature. That was the beginning of the couple’s journey into the advancing stages of debilitating dementia. Not all dementia is due to Alzheimer’s, but it is the most common reason, responsible for 50 to 70 percent of cases.

An estimated 5.3 million Americans suffer from Alzheimer’s, the seventh leading cause of death, and the future looks even more threatening. As our population ages, research indicates that by the year 2050 the number of patients may soar to 16 million, and millions more will be affected. According to the Alzheimer’s Association, 70 percent of Alzheimer patients live at home creating a ripple effect as family, friends, and caretakers are affected by the disease.

RECOGNIZING THE DISEASE

All of us become more forgetful as we age. Our brains change, as do our bodies. However, profound memory loss that leads to confusion and major changes in our minds and bodies is not normal. Carol Gurioli. family services specialist with the Alzheimer’s Association of Southeastern Virginia, explained, “Dementia is determined when people have cognitive loss in two or more of five domains.” Short term memory loss is always present, plus one other, like naming. “Forgetting a name is common in aging,” she said. “What distinguishes normal function from dementia is the frequency with which the naming problem occurs and the time it takes to recall the name.”

Another cognitive function for concern is reasoning and logic. People have trouble making decisions. “If you go to a restaurant, the menu can be baffling to someone with dementia,” Carol said. “They’re likely to say, ‘I’ll have what you’re having,’ because they lack the bases for making choices.”

A fourth domain is the “executive function,” or the steps required in fulfilling a task. Jan recalls finding Walt standing in front of the bathroom sink, toothbrush in one hand, toothpaste in the other, totally confused. She had to gently remove the toothpaste tube from his hand and squeeze some paste onto the brush. This is not an unusual problem for patients with dementia. “We take for granted the steps involved in daily activities,” Carol explained. “Actually the simple task of brushing our teeth involves eight steps, and patients will need help.” Dementia patients may also have difficulty following a recipe, balancing a checkbook, and, eventually, bathing and dressing as the condition progresses.

The fifth domain is visual and spatial perception. Too much is going on, and it is confusing. For example, people with dementia are unable to distinguish between similar colors. “They may not see a piece of meat if the plate is a brown shade,” Carol said. Caregivers should be aware of this difficulty and use contrasting colors so the patient will perceive what’s important or significant.

Other problems become evident. Patients may withdraw from social settings, avoiding hobbies, work projects, and sports they previously enjoyed. Changes in routine can make them suspicious, fearful, anxious, or angry. Alzheimer’s is a progressive disease and eventually all five domains will be affected.

Early diagnosis is important to maintain the quality of life as long as possible, and fortunately a skilled physician can diagnose Alzheimer’s with 90 percent accuracy. “Living in the early stage can still be meaningful,” Carol said. The advantage of early diagnosis is that medications can help functioning at that point. Later on, they are less advantageous. Although drugs cannot halt the progression of the disease, they may actually postpone by several months deterioration in the various domains.

LOVING SUPPORT

Patients and family members should know that they do not have to face their challenges alone. Various organizations and services exist to bring knowledge and assistance to patients and caregivers. The Southeastern Virginia Chapter of the Alzheimer’s Association provides family services at no cost through the 24-hour Helpline (1-800-272-3900).

“You can contact the Helpline to say, ‘Mom’s not eating’ or ‘Mom’s wandered,’” Carol explained. In addition, the Association has the Reminder newsletter, a lending library of books, pamphlets, videotapes, and DVDs on a variety of subjects as well as orientation and support groups. “We have 41 support groups in this area,” Carol said. “They are peer-mediated, not therapy groups.” The local chapter also has a new program called EASE, for Early Alzheimer Support and Education, especially designed for early stage, newly diagnosed patients and their caregivers.

In addition to knowledge, caregivers need help as they cope with additional burdens. Jan used respite care and day care for the last months of her husband’s life. One day a week, a trained person from Jewish Family Services came in for a few hours, and two days a week a van from Sentara Day Care picked him up. “Walt always came home in a good mood, and I could grocery shop and run errands,” she said.

Private businesses also provide assistance. Accessible Home Health Care, for example, offers a variety of non-medical services, including help with dressing, bathing, grooming, and laundry, as well as meal preparation. The idea behind these services is to help patients stay in their own homes as long as possible, both for the loving support of families and to reduce costs. Residential care for memory-impaired patients is expensive, ranging from about $4,000 to $6,500 a month.

Currently, there is significant hope for improving care and finding a cure for Alzheimer’s, but much research is needed and more funding is imperative. Memory Walks are the Alzheimer’s Association’s major fundraiser to achieve those goals. The next one will be October 10 in Virginia Beach, beginning at Neptune Park. “You can form a team in honor of a loved one,” Carol said, “and you’ll contribute to an important issue of our time.”

*Not real name

For more information:

• For Alzheimer’s Association information or to register for Memory Walk, phone: 757-459-2405 or visit www.alz.org/memorywalk

• Jewish Family Services - Phone: 757-321-2232 or visit www.jfshamptonroads.org

• Sentara Adult Day Health Care Center - Phone: 757-306-2850 or www.sentara.com

• Accessible Home Health Care - Phone: 866-370-2050 or visit www.accessiblehamptonroads.com

Virginia O’Keefe is the author of Speaking to Think: Thinking to Speak.