BY PAULA SPENCER OF CARING.COM
If a parent or other family member has started to show signs of dementia or possible Alzheimer’s disease, you may feel overwhelmed and unable to figure out what to do. Your most important priority is to get a diagnosis. The earlier you can put a name to the problem, the easier it is to organize a care plan.
There’s no single test for Alzheimer’s disease or most other dementias. In fact, a definitive diagnosis can only be made after death, by examining brain tissue for telltale changes. But doctors can make a probable diagnosis of Alzheimer’s with as much as 90 percent certainty. Start here:
1. Create a record
It’s almost always family members, more than physicians, who spot the first signs of Alzheimer’s disease. Start by writing down observations that you and others make of the person you’re concerned about. You’ll be better able to notice patterns or changes in the frequency of certain behaviors than if you keep a mental record. This evidence is incredibly useful when you speak with medical professionals and may even help when discussing the topic with family and friends.
This same notebook can also serve as your “playbook” throughout your family’s journey, a central source of all the information that will be needed not only to make a diagnosis but to formulate an ongoing care plan. Having all the information you need in one place can be a valuable shortcut for families.
What to record:
Part of the determination about the condition will have to do with how much the person has changed or how much you think he or she isn’t “acting like himself or herself.” Be sure to note when you first noticed a particular change in behavior, physical ability, or mental ability (or about how long the change has been occurring); how frequently it occurs; if it has worsened; and how different or “abnormal” it is for him or her.
Other observations: Try to include as much information as you can about the person’s condition — not just things that you think are typically associated with Alzheimer’s. Other medical issues or unexpected changes (such as falling or incontinence) can be related to the disease.
2. Educate yourself
As soon as you suspect Alzheimer’s, invest a little time in getting more familiar with the disease. There are lots of myths about it and plenty of confusion. Having a basic understanding allows you to ask doctors more informed questions and recognize the signs to watch out for.
Try not to jump to conclusions. Various types of dementia, as well as other illnesses or situations, may result in changes that mimic signs or symptoms of Alzheimer’s disease (such as disorientation and mood swings or personality changes), so you’ll need to consult with a qualified physician before determining that it’s Alzheimer’s. An early diagnosis means that the right medications and lifestyle changes can be made to slow the disease’s progress and help preserve independence as long as is practical.
Take the Alzheimer’s Association’s Brain Tour and learn how the brain works and how Alzheimer’s affects it.
3. Find and talk with a qualified doctor
With the observations you’ve made of the person you’re concerned about and a basic foundation of knowledge about Alzheimer’s, you’re ready to consult with a medical professional.
Start with his or her regular primary care doctor. This professional is optimal because he’s observed your family member over time. But if the doctor doesn’t seem particularly knowledgeable about dementia or doesn’t seem to be taking your concerns seriously, it’s probably time to look for a more appropriate choice, ideally someone with experience in treating dementia. Contact your local Alzheimer’s Association chapter, Alzheimer’s Disease Center, other Alzheimer’s program, or hospital referral system. A geriatrician (a physician who specializes in treating older adults) may be especially helpful.
Go along to the office visit. Even if you don’t have a history of attending medical appointments, try to arrange to be at this one: “I’ve been worried about you. Let’s make sure everything is all right or see if the doctor can help with that memory problem. I’ll come with you because you know they now say it’s a good idea for more than one adult to be at all kinds of medical appointments. That way, between the two of us, we’ll keep track of everything the doctor says.”
Be prepared for the appointment. Bring your notebook of observations, including a list of the medications he or she is currently taking, and a list of questions you’d like to ask, as well as his or her medical history if it’s a new doctor. Be sure to include a request for referrals to specialists (if necessary) in your list of questions.
Arrange for some assistance. If you live far away and can’t be there for the appointment, try to make sure someone you all trust accompanies him or her. Ask your loved one to sign a release permitting you to discuss his or her medical records and care with the doctor so you can call directly with follow-up questions after the intermediary gives you a report.
4. Get a thorough medical workup
The doctor will use evidence from a careful exam and a process of elimination to arrive at a diagnosis. A combination of diagnostic tools enables him to screen for conditions that may be affecting your loved one. Here’s a quick breakdown:
5. See a specialist
When Alzheimer’s disease is suspected or diagnosed, the doctor may recommend seeing a specialist, such as a neurologist, psychiatrist, or geriatrician. This specialist will help confirm the primary diagnosis and advise you on Alzheimer’s care. He can also answer specific questions you may have about disease, its treatment, and caregiving, and he may be able to direct you to other helpful resources and support groups.
6. Consider a second opinion
It’s often advisable to seek a second opinion about your family member’s condition (whether the diagnosis is probable Alzheimer’s or not), especially if you or the doctor is uncertain about it. Another experienced, skilled physician can review the findings of the tests and evaluations he or she has already undergone.
After the diagnosis: What lies ahead
Assemble a team. If the diagnosis is probable Alzheimer’s, the next step is to start putting together an Alzheimer’s care team. Alzheimer’s care works best when it’s a shared responsibility — and when good resources and sources of support are available to the primary caregiver.
Don’t forget your own concerns. In addition to powwowing with your family about options for your loved one’s care, be sure to start thinking about support for yourself (or the person who will be the primary caregiver). Financial, emotional, and physical stresses often build over time.
There’s no single timetable for how the disease progresses, and your loved one may have many satisfying years ahead. Do what you can to ameliorate the symptoms, so that you can prolong his or her independence and dignity.