The dementia diagnosis process, Part 3: Meeting the doctor and getting a diagnosis

When someone shows symptoms that may indicate dementia, families need to consult a doctor. A proper diagnosis is essential to know if someone has dementia, and then to start planning the care for the person. But families are often unsure how to prepare for the doctor visit, what the doctor may ask, and what will happen during the visit.

Dr CT Sudhir Kumar, Consultant Psychiatrist, has several years of experience in dementia and elderly mental health services in the UK and India. He is an honorary consultant with ARDSI, is involved with the Dementia Friendly Community- India initiative, and was instrumental in bringing out the ARDSI Memory Clinic guidelines. In this interview series, he explains the diagnosis process and gives practical suggestions for families to prepare for and handle the diagnosis process effectively. [note]

In Part 3 below, we focus on the doctor visit, such as how to explain the situation, and what sort of things the doctor may ask during the visit, and about tests, scans, etc. [note](Other parts of this four-part interview series are: Part 1, Part 2 and Part 4.)

Dementia Care Notes: During the doctor visit, what should the family explain first?

Dr Sudhir Kumar: Begin the consultation by talking about your concerns and what worries you.

When describing the symptoms that you are worried about, please tell the doctor the time period during which the symptoms developed. Also mention any possible time-links between the starting of the symptoms and other medical problems or life changes. Please stick to basic facts and let the doctor decide what is important enough or what is relevant. The doctor will ask for details if required.

Hand over the medical file you created and be ready to answer questions related to medical history, and the person’s memory and other cognitive problems.

DCN: What should the family highlight when handing over the medical file?

Dr. Sudhir Kumar: While giving the file you have arranged, you can mention the major health problems and things that are especially important.

Tell the doctor about blood pressure problems, stroke, heart problems, diabetes, and cholesterol problems…Also mention any past depression episodes. Be especially careful to mention things like asthma and stomach ulcers….Some other important things to mention are any serious falls or head injuries, the person’s drinking habits and amount of drink, and whether the person is a smoker (or was a smoker in the past).

For example, tell the doctor about problems that may be connected with the risk of vascular dementia and some other important types of dementia. Tell the doctor about blood pressure problems, stroke, heart problems, diabetes, and cholesterol problems. These are also important because some dementia medicines can slow the heart. Also mention any past depression episodes.

Be especially careful to mention things like asthma and stomach ulcers. This is important because some dementia medicines can make asthma and stomach ulcers worse.

Some other important things to mention are any serious falls or head injuries, the person’s drinking habits and amount of drink, and whether the person is a smoker (or was a smoker in the past).

Make sure the doctor sees the full list of the current medicines and their doses, and your note on medicines that have caused serious side effects in the past.

DCN: During the doctor visit, the person and family may contradict each other. How can we explain things and yet avoid such problems?

Dr. Sudhir Kumar: If you think the person will contradict you or get upset or angry when you are explaining the situation to the doctor, try to talk to the doctor separately when the person is not present. If that is not possible, prepare a brief note beforehand that explains the situation and what the person may contradict. Pass this note to the doctor in a way such that the doctor reads it. For example, you can hand it to the doctor. Or you can place it as the first page in the medical file you give the doctor for review.

Also, discuss the problems among family members so that there is no confusion or contradiction between family members while explaining the situation to the doctor.

DCN: The person may refuse to go to a doctor, saying there is no problem. Any tips on handling this?

You can book an appointment to see the doctor and go for the consultation without taking the person along.

Dr. Sudhir Kumar: You can book an appointment to see the doctor and go for the consultation without taking the person along. Just take along all the information as described earlier, such as the symptoms and how they are impacting the person, and the medical records. Explain the situation to the doctor and that the person is unwilling to come. Get some preliminary advice. Discuss the next steps that can be taken.

(Editor’s tip: Some families also take along some videos and photos to explain the situation if they cannot take the person for the appointment)

DCN: What will the doctor do after the family has explained the problems and the medical history?

Dr. Sudhir Kumar: The doctor will look at the current symptoms and existing medical history. The doctor will assess the person for cognitive impairment. The doctor will also ask the family questions, conduct various tests and investigations, etc.

All this information will be used by the doctor to give a diagnosis. This may be a dementia diagnosis or a different diagnosis that explains the situation satisfactorily.

DCN: So, there are other health problems that cause dementia-type symptoms?

Dr. Sudhir Kumar: Many mental health difficulties (such as stress, anxiety and depression) can seem like early dementia and can affect how the person functions and behaves. The doctor will assess the person to understand the underlying difficulties and arrive at a proper diagnosis.

…dementia is a condition that gets worse over time because the brain gets more damaged over time. However, cognitive impairment can happen as a result of conditions like anaemia, vitamin deficiencies, thyroid problems, side effects of certain medicines etc. Cognitive difficulties caused by these conditions are fairly reversible with treatment. A proper diagnosis is required to start any treatment (whether for dementia or for some other medical condition).

Please note that dementia is a condition that gets worse over time because the brain gets more damaged over time. However, cognitive impairment can happen as a result of conditions like anaemia, vitamin deficiencies, thyroid problems, side effects of certain medicines etc. Cognitive difficulties caused by these conditions are fairly reversible with treatment.

A proper diagnosis is required to start any treatment (whether for dementia or for some other medical condition). The diagnosis also gives the family a better idea of what to expect. They can then plan how they will care for the person.

Please do not assume the person has dementia just based on the symptoms.

DCN: What tests can a doctor ask for?

Dr. Sudhir Kumar: Blood tests are generally done to check for any physical problems that may be affecting cognitive functions. They may also be done for problems that can affect the decision about the medicines.

Blood tests are generally done to check for any physical problems that may be affecting cognitive functions. They may also be done for problems that can affect the decision about the medicines.

The doctor will look at recent blood test reports and examine the person and the medical history and then decide which tests have to be done.

Examples of tests that detect treatable situations are tests for anaemia, thyroid, and vitamin deficiencies. Problems detected through these tests can be treated and may result in improved cognitive functions.

The doctor may also include tests to detect infections (like urinary tract infections), electrolyte abnormalities, liver and kidney functions. Doctors may also ask for special blood tests if they think they are dealing with an uncommon condition.

In addition to blood tests, the doctor may ask for a brain scan to be done. Sometimes, the doctor may ask for a heart trace (ECG), especially if the doctor is going to start any medicine which may slow the heart. Carry along old ECGs to help the doctor decide.

How will the doctor check for “cognitive impairment”?

Dr. Sudhir Kumar: Different doctors use different approaches.

There are several standard tests available for assessing the level of cognitive impairment. These contain a set of questions assessing various cognitive functions. The doctor may use all the questions or they may pick and choose items which they consider relevant.

Doctors use their impression and judgment along with any such test score to understand the type of impairment and whether it is mild, moderate, or severe, etc.

Please note that the test score is not a result to be treated as something set in stone. Doctors use their impression and judgment along with any such test score to understand the type of impairment and whether it is mild, moderate, or severe, etc.

When the doctor is doing this assessment, please do not help the person with the answers unless you are asked to.

Sometimes the doctor may want a more detailed cognitive test, especially if the symptoms are not clear, or if they are complex and the diagnosis doubtful. They may even refer the person to a psychologist with specialist skills or a neuropsychologist for this.

DCN: Families sometimes try to use online tests to either diagnose dementia or see if it has become worse over time. What are the pros and cons of online tests?

Dr. Sudhir Kumar: Tests available online may give some general idea about the cognitive impairment. But these tests are definitely not sufficient to know whether someone has dementia or whether the dementia is getting worse.

When an untrained person administers the test, they will just get a score. But when a doctor conducts the test, the doctor also looks for more information like the reaction of the person, the person’s approach to the task, and the response (even if it was wrong).

When an untrained person administers the test, they will just get a score. But when a doctor conducts the test, the doctor also looks for more information like the reaction of the person, the person’s approach to the task, and the response (even if it was wrong). All this gives the doctor a better understanding of the impairment. It also gives useful information in management.

A cognitive test result has to be seen in an overall context. Remember a diagnosis of dementia or its stage is not made just with a low score. Please do not use a self-conducted online test to diagnose yourself or a family member with dementia, or to rule out dementia. Consult a doctor and let the doctor decide.

DCN: Please tell us more about what a “brain scan” shows and how this helps in a diagnosis.

Brain scan reports help doctors understand brain changes. They help identify conditions like blocks in blood vessels, features of stroke, tumours, old blood collections, new brain injuries, etc.

Dr. Sudhir Kumar: Brain scan reports help doctors understand brain changes. They help identify conditions like blocks in blood vessels, features of stroke, tumours, old blood collections, new brain injuries, etc. They may also indicate areas that require more attention or even referring to other specialists.

Brain changes seen in a scan depend on the type of dementia. For example, in Alzheimer’s Disease, the scan may show shrinkage of the brain, whereas in Vascular Dementia, the scan may show changes related to poor blood supply in different parts of the brain. In practice, it is common to see scans which show both type of changes. A scan may show which part of the brain has the change/ shrinkage, and this helps with the diagnosis.

The most common types of scans are CT and MRI. An MRI gives more information than a CT scan but is more expensive.

Some centres also have more sophisticated and even more expensive scan facilities like SPECT, PET and DAT scan. These measure blood flow across different parts of the brain (a low blood flow indicates poorer function). Use of such sophisticated scans is not common.

Comparing old and new scans helps to understand how the situation has changed (this is why you should carry along old scans or their reports).

DCN: Some doctors insist that the scan should be done only at a particular centre. But then they only glance at the scan and don’t spend much time on it.

The specialists skilled in reading and interpreting the scan pictures are the radiologists. The quality of scan reports and the radiologist analysis varies between centres.

Dr. Sudhir Kumar: A scan needs special skills to analyse. The specialists skilled in reading and interpreting the scan pictures are the radiologists. The quality of scan reports and the radiologist analysis varies between centres. So, doctors may want the scan to be done in the centre that they trust more.

For example, even if the scan does not seem to show any general shrinkage of the brain, radiologists may use certain sophisticated measurements to check for changes that may indicate early dementia Some radiologists do this routinely for any dementia investigation. Others do this only if the doctor asks for it.

Most doctors read the scan report done by the radiologist. They also may have a quick look at the pictures. Don’t be surprised or upset if your doctor does not spend a long time on those expensive pictures as they would have already got the information they need from the report prepared by the radiologist.

DCN: Sometimes the scan report is normal but the doctor says it is dementia. How can that happen? And if they were so sure, why did they ask for a scan?

Dr. Sudhir Kumar: A brain scan is just one part of the information that a doctor considers for a diagnosis. The doctor also looks at many other factors before giving a diagnosis.

If the rest of the information about the person points strongly to dementia, then the doctor may give a dementia diagnosis even if the scan is negative (normal)….if the person’s history suggests dementia, and the scan also show brain changes like shrinkage or opacities, the doctor will be more confident about giving a dementia diagnosis.

If the rest of the information about the person points strongly to dementia, then the doctor may give a dementia diagnosis even if the scan is negative (normal). That is, a normal scan doesn’t always mean the person has no dementia.

But a scan can be helpful to confirm a diagnosis. So, if the person’s history suggests dementia, and the scan also show brain changes like shrinkage or opacities, the doctor will be more confident about giving a dementia diagnosis.

Note that some doctors do not ask for a scan if the person’s history is typical, especially if they feel the family may not be able to afford it.

DCN: Do doctors use a standard process to look at all the data and arrive at a diagnosis?

Doctors differ in how familiar they are with these (available guidelines). Non-specialists are less familiar with these guidelines or any updates to them. Doctors also differ in how they interpret and apply them in practice.

Dr. Sudhir Kumar: There are some published references that can be used for dementia diagnosis. One important reference is ICD 10, a WHO issued and recommended guideline that is the main diagnosis reference for mental disorders. Another important diagnostic reference is DSM, which is common in the USA. These guidelines are revised regularly.

These available guidelines are broad. Doctors differ in how familiar they are with these. Non-specialists are less familiar with these guidelines or any updates to them. Doctors also differ in how they interpret and apply them in practice.

In practical terms, the doctors usually have their own criteria for diagnosis. This is based on the diagnosis frameworks and their own experience. They rarely use a formal, physical checklist when seeing someone.

Thank you, Dr. Sudhir Kumar!

We will continue our discussion on the diagnosis process in Part 4.

This interview is part of a four-part interview series. Other parts are:

Note:In this interview series, Dr CT Sudhir Kumar shares general information and suggestions about dementia diagnosis. Please contact a doctor for medical diagnosis and advice for your situation.