What to do if you suspect Alzheimer’s
An appointment is missed. A bill goes unpaid. A television remote winds up in the freezer.
Are these harmless senior moments or worrisome warning signs that a parent may be in the early stages of Alzheimer’s disease?
Surveys consistently show that Alzheimer’s is the second most feared disease in America, after cancer. Among those 55 and older, Alzheimer’s sometimes comes out on top.
After a prolonged period of ever-increasing cognitive devastation, the disease is invariably fatal. So it may seem there’s nothing to lose by putting off a diagnosis as long as possible.
But experts urge you to resist that temptation. In fact, doctors who specialize in geriatric medicine say it’s important to get a parent checked out as soon as alarm bells start going off.
The medical benefits of an early diagnosis may not be dramatic, but they do exist, says Dr. Gary Kennedy, director of geriatric psychiatry at Montefiore Medical Center in the Bronx. Also, a patient who is diagnosed early enough is still able to participate in decisions about treatment and long-term care.
“There’s a lot we can do about the disease, short of a cure,” he says.
Besides, the bells that go off may be false alarms. The problem may not be Alzheimer’s at all.
Having trouble remembering someone’s name or getting a word stuck on the tip of your tongue may simply be a harmless sign of aging, says Debra Cherry, executive vice president of the Alzheimer’s Assn.'s Southern California chapter.
But if bigger problems crop up, it may be time to start worrying.
The list of potential symptoms is long, and it’s not necessarily specific, Kennedy says. “Maybe you notice something wrong with a person’s conversation, even if you can’t put your finger on it,” he says. “Something’s just not quite right.”
In judging what matters and what doesn’t, “‘change’ is the operative word,” says Linda Ercoli, director of geriatric psychology at UCLA. But Alzheimer’s typically comes on gradually — all too appropriately, the disease is said to have an “insidious onset” — so changes in a parent’s behavior may not even register “until it reaches a certain threshold.”
Changes may be most significant if they make it difficult for a parent to do the things he or she has always done well before, adds Dr. Jeffrey Burns, associate director of the University of Kansas Alzheimer’s Disease Center in Kansas City. “That should be a red flag,” he says.
The change shouldn’t just be a one-time thing either. It’s important to see a pattern of behavior, Kennedy says. “It’s the second forgotten bill, the second time a pot is left on the stove to burn. Anyone can do those things once.”
In some cases, the disease may affect someone’s mood or personality. A parent in the early stages of Alzheimer’s might seem uncharacteristically suspicious, depressed or apathetic, Ercoli says. Perhaps that parent will become upset or frustrated more easily than in the past.
Sometimes the clue can be that a parent’s long-standing concern about good hygiene has waned. “That’s a big one,” says Patti Davis, whose father, President Ronald Reagan, was perhaps the most famous victim of Alzheimer’s.
But it should take more than a hunch to prompt a visit to a doctor. Before taking that step, Davis recommends discussing your suspicions with someone else who’s involved in your parent’s life — a sibling, your other parent or a friend.
“I wouldn’t go solely on your own opinion,” says Davis, who now facilitates a support group for relatives of Alzheimer’s patients at UCLA. “You may not be the most objective observer. You could be in denial, or you could be too quick to think something is wrong.”
But if your consultation does nothing to allay your fears, you have no choice. Geriatricians are adamant that your parent should see a doctor.
For one thing, you could find out that the diagnosis is something less dire, such as hydrocephalus, an under-active thyroid, low vitamin B12 or even vascular dementia (which, unlike dementia caused by Alzheimer’s, can sometimes be reversed or at least stalled).
If Alzheimer’s is indeed the diagnosis, there are medications to try. Though they help only about 60% of patients and don’t really change the disease process, they may manage to stave off the decline by a precious six months to a year, Kennedy says. The earlier they’re started, the greater the effect, Cherry adds.
Another advantage of an early diagnosis is that it can help to keep your parent safe and out of trouble, says Dr. David Reuben, chief of the geriatrics division in the Department of Medicine at UCLA: “Perhaps she shouldn’t be driving. Perhaps she shouldn’t be cooking.”
Besides the potential for medical benefits, an early diagnosis will give your parent a chance to indicate preferences for the future — choices about treatments, possible participation in research trials, end-of-life care. If a diagnosis comes too late, your parent may be too impaired to participate in these decisions, Kennedy says.
But broaching the subject is not going to be easy, no matter how well you handle it. You can’t try to hide your true suspicions by suggesting a visit to the doctor to be checked for something else, like tonsillitis, Davis says. On the other hand, you don’t have to scare your parent by describing the terrible consequences that could result from a delay in diagnosis.
The fact is, the instant you raise the possibility of Alzheimer’s, your parent is going to get really scared without any additional help from you, Davis says. Your goal is to allay that fear, not make it worse. So try to act as calm as possible yourself, regardless of how upset you feel inside.
In the best-case scenario, your parent could admit to noticing problems too, Burns says, “and that can open the door.”
If, instead, your parent jumps to the conclusion that he definitely has Alzheimer’s and the situation is hopeless, stress that it’s too soon to go there — but even if it is Alzheimer’s, there are medications that can help.
Your overall goal should be to keep your parent as calm as possible until you know more, Davis advises. “Say, ‘Look, this could be nothing. I just think we should see a doctor to be safe.’”
The “we” may be the most important word you say. Make it very clear that your parent won’t be alone. You’ll be there too.