Say you notice obvious memory loss in someone close to you. Why didn't the doctor pick it up earlier, you may wonder. Or, why, when you point out the symptoms, might the doctor seem reluctant to pursue the matter? Amazingly, only 35 percent of people with Alzheimer's or other forms of dementia – that's one in three – have a diagnosis of the condition in their medical record, according to the Alzheimer's Association.
What gives? This week at the AA's International Conference on Alzheimer's Disease, researchers gave a preliminary report into some insightful interviews they'd done with Australian physicians. It turns out there are several reasons doctors sometimes fail to diagnose dementia.
Here's what they are, and my thoughts on how to get around them if you're concerned about a loved one:
1. Doctors often spend precious checkup time on other symptoms.
You might think a thorough exam would pick up on dementia. But older people often come to checkups with multiple health issues. Many of these have obvious symptoms quickly revealed by bloodwork, tests, or physical condition, and these are often tended first. Also, people with mild cognitive impairment or memory loss may be afraid to mention what they're experiencing to a doctor, and people with more significant memory loss may simply neglect to report such symptoms. The doctor only has so much time, so the cognitive issues are skipped over.
Solution: If you're concerned about a family member, don't wait for the problem to be "discovered." Place a call to the person's doctor before the next appointment and register your concerns. Or, ideally, encourage the person to make a special appointment to be screened for memory loss by explaining that you've noticed some changes and will feel better when you both find out the cause. Point out that there are many causes for cognitive changes, not just Alzheimer's. Ask to come along.
In fact, most cases of Alzheimer's are first detected by family members. You're with the person often and thus see more.
2. Some doctors see no point in pursuing diagnosis.
Some doctors still ascribe to "therapeutic nihilism" about Alzheimer's. That's the belief that a cure is impossible – so, they rationalize, why bother raising the issue?
Solution: If you're just stonewalled, find a different doctor. Yes, Alzheimer's is incurable and irreversible (so far). But prompt diagnosis of Alzheimer's allows the person and his or her family to make future plans about housing, healthcare and financial decision making, and legal housekeeping. Moreover, people who are treated earlier with medication tend to have slower disease progress, and can try other therapeutic assists, too. It's also true that dementia symptoms that aren't caused by Alzheimer's can sometimes be reversed -- for example, in the event of a medication reaction.
Ask for a referral to a memory clinic, neurologist, or geriatrician. (The Australian docs surveyed were all general practitioners.) You don't have to tell your loved one you think his doc's a quack; simply explain you've been referred to a specialist.
3. Some doctors don't want to upset longtime patients.
Sometimes our spouses, parents, or grandparents have been seeing their primary doctors for a long, long time. Some of the Australian GPs reported fear over damaging the doctor-patient relationship by diagnosing dementia as one of the major reasons they hang back. They were especially worried about irking the person over the question of driving.
Solution: Try appealing to how much the physician cares about his or her patient, and turning a protective friendship into something therapeutic and positive. "I know you've known Dad a long time, and we all hate to see anything bad happen to him. But we're prepared to help. We need to make sure we know what's going on so we all know what to expect. You're the person Dad's counting on to help him figure it out and, if need be, make the best of it." Obviously if you still get nowhere, you'll need to persist with a specialist.
4. Doctors don't always have solid relationships with dementia support services.
The Australian GPs felt that having a trusting, personal relationship with the individuals who provide dementia support was one of the biggest drivers to early diagnosis. If they felt good about where they could refer their patients, they seemed more likely to send the patients down that road to help. And when they're insecure about where to turn, it's harder.
Solution: Try probing the physician about potential resources. Does the doc seem confident and comfortable about directing you to further help in your area? Or do you get the same evasiveness you got about the symptom evaluation? Resources for families of people with dementia are more diverse than ever. If a doctor seems uncertain or pessimistic about where you can turn, don't let it slow your pursuit of help and answers. You can do this kind of research yourself, such as by contacting your regional Alzheimer's Association or exploring directories of other [sources of local support] (http://www.caring.com/local).
5. Doctors can find it hard to time the proper referral of resources.
The docs interviewed said that when they make referrals at diagnosis, it's sometimes too much for families to absorb. But then the doctors forget to spend time re-referring at follow-up appointments.
Solution: Remember that the person's doctor is at your disposal at any time. You don’t have to wait for another appointment to call the office, once you're ready, and ask where to find help about coping with a diagnosis. One small good thing about an Alzheimer's disease diagnosis: Once you start asking for help, you might be surprised how many people want to step forward to offer it.