For John MacInnes, the beginnings of Alzheimer’s disease were startling. The retired executive and former pastor in Bloomfield Hills, Mich., first realized something was wrong as he was delivering a PowerPoint presentation to a community group. “Then in mid-sentence, I had problems,” he says. “I had a well-rehearsed script in front of me, but I couldn’t get the words right, couldn’t get them out. That kind of shook me up.”
Memory loss and impaired thinking are hallmark symptoms of this disease. But MacInnes was fortunate in one respect. He was diagnosed at an early stage, which enabled him to take steps to cope with memory loss, organize his daily life, and plan for his future by making his express wishes known to loved ones who can carry them out.
Shortly after that unsettling presentation, MacInnes, who was 80 years old at the time, consulted his doctor. He was having trouble managing multiple tasks, something he had always been able to do well. He also became confused while driving in new areas. After being evaluated, he learned that he had Alzheimer’s, a progressive brain disease that destroys brain cells and causes memory loss, confusion, thinking problems, and personality changes.
Like many who receive an Alzheimer’s diagnosis, MacInnes felt fear and sadness. “I went through that struggle for several weeks, feeling sorry for myself and asking why did this have to happen to me? In the middle of that, I wrote myself a little poem -- something I had never done before -- and I titled it, ‘ALZ Is Not About Me.’ Looking back, that’s probably the point when I began to concentrate on leaving self-pity behind me and focusing on learning more about Alzheimer’s.”
As he writes in his poem, “My shining days may be dimming, for sure, but life for me is not done/May God grant me peace, whatever those sunset days may bring.”
Despite his new attitude, the gradual loss of independence has been frustrating, says MacInnes, now 82. For example, he can no longer drive long distances, but must limit himself to short drives to familiar places.
Alzheimer’s Memory Loss
In the early stages of Alzheimer's disease, patients have mild decline in mental functioning. For example, they may read something but retain very little of the information. Or family, friends, and co-workers may notice that they struggle to recall words or names.
In mid-stage Alzheimer’s, major memory and thinking problems emerge. People may forget important information, such as their address or phone number, and they may become confused about their whereabouts.
In the severe or late stages, some patients become agitated, depressed, or have hallucinations. They lose their ability to speak and control movement and become incapable of responding to their surroundings. People can live from three to 20 years with Alzheimer’s, but on average, they die four to six years after diagnosis.
As many as 5.3 million Americans have Alzheimer’s, according to the Alzheimer’s Association.
“This is such a devastating diagnosis,” says Beth A. Kallmyer, MSW, director of family and information services for the national office of the Alzheimer’s Association in Chicago. Many newly diagnosed people think immediately of severely impaired, late-stage patients, Kallmyer says. But “what’s happening now is that people are getting diagnosed earlier and earlier and they’re still able to participate in lots of different things in their lives.”
“There’s no cure for this disease,” Kallmyer adds, “but we can help them put some things in place, make those plans, think about the best way to address their long-term-care concerns. If they address it early on, they’re empowered to participate in that process and we think that’s really important.”
There are no drugs to slow the progression of Alzheimer’s, but several medications may help improve mental functioning temporarily in some patients. A group of drugs called cholinesterase inhibitors works by supporting communication among nerve cells by keeping acetylcholine levels high.
“They only work a specific period of time and they don’t work for everyone,” Kallmyer cautions.
However, MacInnes takes Aricept, a cholinesterase inhibitor, and has found it helpful, he says. “I’m still fairly lucid and articulate.”
A different type of drug, Namenda, may be prescribed for moderate to severe Alzheimer’s. It contains memantine, which regulates the activity of glutamate, a chemical involved in learning and memory.
Tips for Coping With Memory Loss
Once a busy executive with a large staff, MacInnes was expert at juggling multiple demands. Now retired, he keeps his tasks on track by writing them on a card. “I put down the five things that I want to do that day and I prioritize them, one through five,” he says. “Some days, I get them all done, and some days, I get three or four. But it’s a day-by-day focus and it does help me.” On a recent day, his list included: storing away the patio furniture, pruning shrubs, organizing the cellar, and organizing a wood-carving area.
Daily life becomes challenging because Alzheimer’s patients may clearly recall events long past, but quickly forget recent conversations and events. They may have trouble keeping track of time, remembering appointments, or recalling people’s names. To cope with memory loss, the Alzheimer’s Association provides the following tips:
- At all times, keep a book of important notes with you. Make sure it contains your address and phone number, as well as emergency contacts. The book should also contain a map showing the location of your home, a “to do” list of appointments, and thoughts or ideas you want to remember.
- Consider ways to make sure that you can return home safely if you wander away or get lost. The National Institute on Aging recommends that people with Alzheimer’s disease wear an ID bracelet with the name and phone number of someone who can come and get them. Several companies sell locators, some of which use global positioning system (GPS) technology, to help locate Alzheimer’s patients. Kallmyer recommends enrolling in the MedicAlert + Alzheimer’s Association Safe Return program, which is a 24-hour, nationwide emergency response service which assists Alzheimer’s patients who wander or have a medical emergency. “Some people think that wandering is something that only happens in later stages, when people are much more confused; but the truth of the matter is that it can happen at any time,” Kallmyer says. If you choose to enroll in a program, be sure to ask about the cost and exactly what services are provided.
- Post phone numbers in large print next to your phone. Include emergency numbers, along with your address and a description of where you live.
- Label cupboards and drawers with words or pictures that describe their contents, such as sweaters, socks, dishes, or silverware.
- Get an easy-to-read, digital clock that displays the time and date. Put it in a prominent place.
- Be careful with electrical appliances. Leave written reminders to yourself to turn off the stove or unplug the iron; or get appliances with automatic shut-off features.
- Enlist a reliable friend or relative to call with reminders about meal times, appointments, and medication.
As Alzheimer’s progresses, familiar tasks, such as balancing a checkbook, following a recipe, or making small household repairs, may become harder. Consider finding help if you’re having trouble doing certain things.
Legal and Financial Matters
At some point, Alzheimer’s symptoms will worsen so that patients can no longer make important decisions about their health, finances, living arrangements, and other matters. MacInnes has legally appointed his wife, Donna, 77, to make decisions for him when he no longer can do so.
Settling one’s legal and financial matters is crucial, Kallmyer says. “It can make things so difficult for the family if these things aren’t put in place. Get that power of attorney. Make sure there’s somebody else on your checking account and your other accounts -- somebody that you trust and that you’ve chosen. If that doesn’t happen and you’re making bad decisions at some point about your finances or are unable to take care of them, it’s very stressful for families to try to get in there and work things out for you.”
Find an attorney to help with the following:
- Identify and complete legal documents, including wills.
- Make plans for medical and treatment decisions.
- Make plans for finances and property.
- Name another person to make decisions on your behalf when you no longer can. “Find that trusted person in your life, whether it be your spouse or child or friend. Talk with them early on about what your wishes are,” Kallmyer says, including choices for care, living arrangements, and end-of-life decisions.
Financial planning can help reduce the stress of paying for care. According to the Alzheimer’s Association, patients and their families should take these steps:
- Estimate all care costs, including ongoing medical treatment, prescription drugs, in-home care services, and residential care, such as assisted living and nursing homes.
- Review personal assets and finances, as well as those of family members who may be able to help cover costs.
- Get advice from a professional financial planner or an elder law attorney.
Consider Future Housing Options and Services
Right now, MacInnes lives in his own home with his wife and doesn’t need outside help. But to prepare for the possibility that someday, he may no longer be able to remain at home, he has started researching assisted care centers for Alzheimer’s patients.
Whether a patient requires in-home help or needs to move elsewhere, people in the early stages can prepare for the future:
- Talk to your family about your wish to continue living in your own home. Discuss the type of help you would need to live there safely.
- Gather information about local services, for example, in-home help, home-delivered meals, and transportation.
- Talk to your family about where you want to live and with whom if you can no longer live on your own.
- Research housing options, such as retirement communities, assisted living, or residential care.
Tackling so many duties can be difficult, Kallmyer says. “For someone that’s just been diagnosed, they might not even know how to tell their family. They might not know what to say or how to move forward.” The Alzheimer’s Association has a helpline staffed by counselors around the clock that patients and caregivers can reach by calling 800-272-3900.
“There’s somebody here who can talk to them and help them work out a plan,” Kallmyer says.