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Getting a diagnosis for suspected dementia

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Dementia is not a disease, but a term which is used to describe a group of symptoms which may accompany certain diseases or conditions. Common symptoms include memory loss, confusion, disorientation, mood and personality changes, and intellectual impairment. Some causes of dementia are reversible and some are irreversible; Alzheimer's disease is the most common form of irreversible dementia.

Why is Diagnosis Important?

Although a definitive diagnosis of Alzheimer's disease requires a brain tissue autopsy, it is not necessary to wait until after death to know with some certainty what is causing the disturbing symptoms and behaviors that accompany dementia. A clinical diagnosis of Alzheimer's disease includes a complete patient and family history, a physical examination, laboratory tests, assessment of drug usage, neurological examination, psychiatric assessment and neurological testing. Both the accuracy and availability of clinical diagnosis have improved a great deal in recent years. The results of several research studies have shown that clinical diagnoses are 81-88 percent accurate when matched with patients' autopsy reports.

Clinical diagnosis offers a number of benefits. First, it will pinpoint dementia caused by potentially reversible conditions, such as drug reactions, tumors, infections, thyroid problems or nutritional deficiencies. In some cases, when these conditions are treated the dementia may go away. It is important to remember that even reversible conditions, if left undetected and therefore untreated, can cause permanent damage.

Second, in instances when the dementia is irreversible, clinical diagnosis also will be able to identify the presence of other medical problems, which may be compounding the Alzheimer's disease or other irreversible dementia, but which can be treated. The quality of life for the patient can be greatly enhanced if treatable conditions are controlled.

Early Diagnosis

A thorough evaluation should be obtained when a person first complains of memory loss, confusion or a decline in ability to perform everyday tasks. Early diagnosis is important because it allows early treatment of reversible dementias and can help to alleviate unnecessary suffering for the affected person and the family. Early planning, started when the symptoms of dementia are mild, also can be more effective and may even help limit the financial and psychological burdens on the patient and caregiver by preparing them to deal with the disease. Early diagnosis may allow the person with the disease to participate in care planning and decision making and may make it possible for them and their families to participate in research. Once a diagnosis has been made, planning to manage the dementing illness, to treat concurrent illness and to identity the resources that may be needed can begin.
A thorough clinical diagnosis at any stage of dementia offers a number of valuable and important benefits in addition to those already mentioned. It will show:
  • the nature and current extent of impairment
  • the remaining strengths of the person with the disease
  • family and community support systems needed for dealing with the disease
  • what to expect in the future
Family members and/or the person with dementia may resist the clinical evaluation for a variety of reasons. It may be viewed as too demanding for the impaired person or too confusing for the family; there may be fear of knowing the worst, or there may be a belief that the diagnosis is useless because dementia has no cure. Resistance also results because those who suffer from dementia may fail to recognize their difficulties or may blame others for these problems. Family members may need to help ensure that a thorough evaluation is undertaken when symptoms became apparent. Knowing what to expect along with understanding the benefits of undergoing an evaluation may help to overcome these problems.

What is Involved?

While procedures will vary somewhat depending on where they are done, a good clinical evaluation will include the following elements, which are used to identify or rule out known causes of dementia.

The Medical Assessment
  • A detailed history, which notes the person's symptoms, changes in functioning and abilities, and other medical conditions over time.
  • A physical examination, to determine overall health status.
  • Laboratory tests, including various blood tests to determine if there may be liver, kidney, thyroid or other problems; tests for vitamin deficiencies--all of which might cause dementia.
  • Neurological examination and laboratory tests such as an EEG (electroencephalogram), to record activity in the brain; a CT (computerized tomography) scan, which produces an x-ray of the brain, or a MRI (magnetic resonance imaging) scan, which uses magnetic energy to give a picture of the brain.

Other Types of Evaluation

In addition to the medical assessment, other types of evaluation will also add to the information about possible causes for the dementia symptoms and will explore the person's abilities and strengths. The information can also be used in planning for the future.
  • A psychiatric evaluation may be done to determine if an illness such as depression, which can mimic dementia symptoms, is present, either as the cause of symptoms or as a contributing factor.
  • Assessment of prescription and non-prescription drug usage, especially those which affect the central nervous system.
  • Psychometric tests, to determine the person's areas of impairment and areas of remaining strength and independence.
  • Tests to determine the person's remaining abilities to perform routine tasks (activities of daily living).
Because an accurate diagnosis is not possible without a complete evaluation and tests which rule out other conditions, enough time should be allowed to complete the entire procedure without over-tiring either the patient or the family. A complete evaluation may take more than one day. It may be done on an outpatient or an inpatient basis. However, these services are typically provided on an outpatient basis. In some instances, Medicare and/or private insurance may cover all or some of the costs associated with an evaluation.

What Next?
You should receive a thorough explanation of all the tests that have been conducted and their results. You will then need a doctor who will provide continuing care based on the outcomes of the evaluation. This may or may not be the doctor or team of professionals who did the evaluation, but it should be someone who:
  • is willing and able to spend necessary time with you and your relative
  • is knowledgeable about and interested in dementia and attendant complications
  • is easily accessible, with convenient office hours and an affiliation with a major hospital near you
  • is able to make referrals to other specialists as needed

Where Can You Get a Complete Evaluation?

Because a complete evaluation requires many kinds of information gathered from a broad range of tests, it usually involves the skills of more than one professional. While your family physician may conduct the evaluation, arranging for those tests he/she cannot do, you may be referred to a specialist--a neurologist or a geriatrician (a physician with special training in the problems of the aging and an interest in dementia). It is important to remember that an accurate clinical diagnosis is not possible without a complete evaluation; whoever does the diagnosis must have the capacity to arrange for and interpret the necessary examinations and tests.

Getting Your Relative to the Doctor

When a relative begins having memory problems, family members are understandably concerned. Often the relative perceives that he/she is having difficulty and seeks to cover up and deny the problem. They may resist attempts by concerned family members to get them to a doctor for a check-up or diagnosis. And, family members sometimes support that resistance, in the belief that there is nothing to be done about the problem.
Ruth Campbell, a social worker at The University of Michigan's Turner Geriatric Clinic, reminds relatives they have rights too. They have the right to know what is causing the problem and the right to do as much as possible to help the memory-impaired person know about whether there really is a problem.

Armed with that conviction--that what you want to do is rational and necessary--you have to be very firm in the way you present it to you relative. Often people put it as a question, "Do you want to go to the doctor?" and then the relative can simply say, "No, I don't want to go," which is the truth for him or her. The real question is not whether they want to go to the doctor, but whether they will go or not. If your relative has refused to go to the doctor before, and you are still convinced that it is important that he or she see a doctor, just present it as a fact. "Tuesday we are going to the doctor." Depending on the individual, you may want to do this the week before, the day before, an hour before, or just as you are getting in the car.

Laurie Bluemlein of the University of Michigan Cognitive Disorders Clinic adds that sometimes deception or simply not telling your relative about the visit to the doctor in advance may be necessary. She suggests using another physical problem as an excuse for a check-up or linking the visit to something your relative enjoys, such as getting ice cream after the doctor's appointment.

Dr. Alan Denzig of the Catherine McAuley Health System's Senior Geriatric Services suggests telling a relative that he or she has not had a good check-up in a long time may be an effective technique for getting cooperation. "They don't have to know they are going to be evaluated for memory loss. We don't necessarily focus our attention on just that problem when they come in for a physical." "Enlist the aid of other family members or trusted friends, who may be able to convince the person that an evaluation is necessary. Use all the help you can get," says Ruth Campbell. "We often have a group of people in the clinic who all got together to give support to the caregiver and the patient on the first visit. Sometimes one relative talks or laughs or walks with the patient, while another negotiates further appointments and does other necessary business."

To make the office visit go smoothly and reduce waiting time, call ahead to prepare staff, suggests Laurie Bluemlein. Write down your concerns and give them to the doctor ahead of time if you don't want to discuss them in front of your relative. Getting your relative to the doctor is in his or her best interest. While it may not be easy, you must take charge and find a way to do what needs to be done.

(Information for this article was drawn from: December 1988 chapter newsletter, "Medical Assessment and Management of Dementia." Norman L. Foster, M.D., 1993. "Getting Medical Help for the Impaired Person" in The 36-Hour Day by Mace and Rabins, 1991. "The Clinical Diagnosis of Alzheimer's Disease: Where Are We Now, Where Are we Headed?" Research and Practice, Fall, 1992. The Alzheimer's Association.)

Credit: South Central Michigan Chapter Newsletter, Summer 1993

© 1997 - 2000 Alzheimer's Association, Northern Virginia Chapter. All rights reserved.

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