Tag: Dr CT Sudhir Kumar

The dementia diagnosis process, Part 4: Understanding the diagnosis and what comes next

Home > Posts > Interviews of Experts > Diagnosis > The dementia diagnosis process, Part 4: Understanding the diagnosis and what comes next
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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 4 below, the final part of this interview series, we focus on getting clarity on the diagnosis and any prescribed medicines, getting some important information for ongoing treatment and care. There are also some tips on handling review appointments. [note] (Other parts of this four-part interview series are: Part 1, Part 2, and Part 3.)

Dementia Care Notes: What should families do if they don’t understand the diagnosis? Or suppose they think the diagnosis does not match the symptoms they see?

Dr Sudhir Kumar: Try to understand the basis of the diagnosis from the doctor. Tell the doctor you do not know much about dementia and politely ask for which pointers in this person indicate the diagnosis given. You can do this whether you get a diagnosis of dementia or of something else. Ask whether any blood tests need to be done to rule out other medical causes, any medicines contributing to these symptoms, or any scan required, and so on.

Tell the doctor you do not know much about dementia and politely ask for which pointers in this person indicate the diagnosis given. You can do this whether you get a diagnosis of dementia or of something else.

Suppose you think the person has dementia, but the doctor gives some other diagnosis. If requested, most doctors would be happy to explain why this situation indicates the condition they have diagnosed. For example, the doctor may explain why the person’s symptoms indicate delirium and not dementia. Delirium is a reversible condition that is often confused with dementia. Or maybe the doctor will explain how the symptoms are probably caused by some medical condition which can be treated and reversed, and therefore the doctor is not giving a dementia diagnosis.

Maybe you think the person doesn’t have the serious symptoms you feel should be seen in dementia, but the doctor says it is early dementia. You can request the doctor to explain. The doctor may explain how the current situation shows a possibility of early signs of dementia and needs follow-up.

DCN: Dementia can be caused by many conditions. Should families ask the doctor which disease is causing dementia? How does the type of dementia affect medicines or care?

Dr. Sudhir Kumar: There are many types of dementia. They share several characteristics, but also have some differences. Doctors identify the type of dementia based on possibilities. But it is not a definite identification.

The type of dementia influences the medicines prescribed. Take, for example, medicines that may slow dementia progression. While there is no medicine that can completely cure dementia, there are some medicines that may slow down how the dementia progresses and show some reduction in symptoms. These medicines are helpful in conditions like Alzheimer’s Disease and Lewy Body Dementia but not very helpful in vascular or frontotemporal dementia.

Or look at how a doctor may prescribe some medicines like antidepressants, antipsychotics, hypnotics, sedatives, or even mood stabilisers. Persons with some types of dementia are more likely to get side effects with certain medicines. So, for persons with these types of dementia, the doctor may not prescribe these medicines. Or the doctor may closely monitor the person if prescribing such medicines. For example, people with Lewy Body Dementia are more prone to side effects with antipsychotics, so antipsychotics are not commonly used for such persons.

DCN: Suppose the family suspects a wrong diagnosis even after the doctor’s explanations? Or suppose they feel the doctor is hurried and dismissive about their concerns and don’t feel comfortable continuing with that doctor? In case they go to a second doctor for another opinion, should they mention the first diagnosis?

Dr. Sudhir Kumar: When you request the doctor to explain the basis of a diagnosis, the doctor should be able to explain and satisfy your concerns about the diagnosis. Consider the symptoms described earlier and the doctor’s explanation (whether a dementia diagnosis or a non-dementia diagnosis). If you are not satisfied with it, consider a second opinion. As with any other condition, misdiagnosis may happen. Seeking a second opinion is reasonable if you are not satisfied.

As dementia is a long-term, progressive disorder, please make sure you are with a doctor you feel will answer your queries satisfactorily.

You may also want to go to another doctor if you were uncomfortable with the way the doctor communicates with you. As dementia is a long-term, progressive disorder, please make sure you are with a doctor you feel will answer your queries satisfactorily. The family and the person with dementia should be comfortable with the doctor.

When going for a second opinion, remember that asking for a second opinion is reasonable, especially because dementia is a non-curable condition. You can let the new doctor know that this is a second opinion without going into details about your reason, if you wish so.

In this context, please remember that there are no definite diagnostic tests for dementia. Doctors give the diagnosis based on how they interpret the information available at that time. Also, symptoms may change or disappear over a period of time. So, with time, it may become clearer whether the diagnosis should be a diagnosis of dementia or a diagnosis of some other condition.

DCN: About prescribed medicines: what should a family ask about the prescription given?

Dr. Sudhir Kumar: Make sure you understand what each prescribed medicine is intended for, and what its dose and timing is. Request the doctor to explain. Ask about possible side-effects. Ask what you should be alert about, and how often to visit the doctor for reviews.

Ask about possible side-effects of medicines. Ask what you should be alert about, and how often to visit the doctor for reviews.

If the person has had some serious side effects with some medicine in the past, make sure that these prescribed medicines are different. Sometimes the same medicine comes under different brand names, so you need to be sure the newly prescribed medicines are not the same as the old problematic medicines.

One important aspect is that sometimes persons are also taking some non-allopathic medicines or supplements. Examples are Ayurveda, homeopathy, and natural remedies. Allopathic doctors are not trained to know possible dangerous interactions of their medicines with medicines from other systems. Some of these other medicines may interact with allopathic medicines. So, if you want to continue the non-allopathic medicines, please ask the non-allopathic doctor who prescribed these about possible interactions before you decide to continue.

DCN: Can you suggest a few important things to ask for on the first meeting (after getting the diagnosis)?

Dr. Sudhir Kumar: We have already talked about asking doctors for more information on the diagnosis and medicines prescribed. Here are some other areas you may want to know about:

Here are some other areas you may want to know about: When should you schedule your next visit to the doctor, Immediate actions needed for care, What to expect in future, Possible sources of information and support, Other questions you may have.

Future doctor visits: When should you schedule your next visit to the doctor? Are there any situations where you should get an immediate unscheduled consultation for example, which types of side effects, deterioration, etc. need this? What should you do if you need an emergency consultation?

Immediate actions needed for care: This is related to changes to be made at home or in the care arrangements. You may also need to know which symptoms to be more careful about and what sort of action could be needed. Please note that doctors may not be able to help for home care related topics.

What to expect in future: Try to get some idea about the person’s current stage of dementia and what sort of progression to expect. Also, note that more information can be obtained in future visits.

Possible sources of information and support: Ask if they have information leaflets on dementia and care. Ask for names and contact details of counsellors or experts who can give more information on dementia and on caregiving. Get the names of organizations that provide support services. Check if the doctor can suggest any local caregiver group.

You may also have other questions. Take along a list with you because you may forget your questions when you hear the diagnosis. (Editor note: This is a common problem, because the shock of a diagnosis makes it difficult to think clearly at the moment.)

Try to make notes while talking to the doctor or just after the meeting. This will make it easier to share the information with other family members at home. If you realize later that you forgot to ask something, contact the doctor if it is important. Otherwise, note it down for the next visit.

DCN: The visit to the doctor may stress the person who may be uncertain and worried about the diagnosis. Or the person may be suspicious and angry. Or the person may deny the diagnosis given. Any tips?

Dr. Sudhir Kumar: A doctor trip can be very stressful for the person because it may involve travel, waiting time, unfamiliar surroundings, and strange faces and questions. The diagnosis can make things worse because the person may either not understand it or may understand it partly and get very upset. This becomes worse if the person sees family members also look stressed and upset.

Please do not argue with or get upset with the person. Avoid any attempts to convince. Instead, listen with respect and try to be calm and reassuring. Don’t rush matters and try to make the person understand or agree to the diagnosis. Don’t pass on your stress to the person.

Later, if needed, you can talk to others to discuss the best way to explain the diagnosis to the person. You may need support for that.

DCN: This brings us to what happens in the days just following the diagnosis. Please share some important aspects of the initial part of the post-diagnosis stage.

Dr. Sudhir Kumar: Dementia goes on for years. It requires staying in touch with doctors and other professionals, including support organizations to be able to handle care. So, this response can only be a pointer to some important aspects to keep in mind just after the diagnosis:

  • Diagnosis acceptance.
  • Expectations from medicines.
  • Need for ongoing consultations with doctors.

Families that take care of these will be able to keep getting the information they need as their situation changes.

…families have to make many adjustments in their lives and their environment to meet the changing needs of someone with dementia. This is part of caregiving support and advice.

Please note that families have to make many adjustments in their lives and their environment to meet the changing needs of someone with dementia. This is part of caregiving support and advice. It is a vast topic and is not discussed here because we are focusing on the diagnosis and related initial interactions with doctors.

(Editor’s note: This site explains several aspects of planning and adjusting for care. For example, you can get an overview of dementia home care at Dementia Home Care: An Overview or read about home adaptations at Adapt the home for persons with dementia. Or contact us for more pointers.)

DCN: Let us first discuss diagnosis acceptance. Even if they were convinced about the diagnosis while talking to the doctor, families usually start doubting the diagnosis afterwards. Also, people around them show suspicion of the diagnosis and say nothing is so seriously wrong.

Dr. Sudhir Kumar: It is common for a person with dementia and the family to refuse to accept the diagnosis of dementia. They may look for alternate explanations. Some even go on for multiple consultations with various doctors, hoping for a change in diagnosis. While this is natural to some extent, extending this multiple opinion process too long delays starting suitable treatment and care.

Try to meet informed and reliable persons to discuss the diagnosis and its impact.

If you have close friends or relatives who are familiar with similar situations, discuss your worries, concerns and doubts with them and get their viewpoints. Also do this if you are considering treatments which are not commonly used. But please keep in mind that the person has a medical condition, and so the advice and suggestions of laypersons may not be based on correct information and you should cross-check it with a medically qualified practitioner.

One thing that can help a lot is meeting families where someone has dementia. Local organisations and websites might give you information about local services available. You can also look online for forums.

(Editor’s note: This site has a resource section for dementia resources in India. See Dementia Caregiver Resources across India for some all-India resources, and City-wise/ Region-wise Dementia Care Information for links to resources in various city/ region wise.)

DCN: Sometimes families start the medicines and can’t see the results they hoped for. They are very disappointed. This is one major reason they keep trying new doctors and alternate therapies.

Please do not expect any dramatic, sudden or huge changes in the person after starting the prescribed medicines.

Dr. Sudhir Kumar: Please do not expect any dramatic, sudden or huge changes in the person after starting the prescribed medicines. It may often take months to figure out whether the medicines are effective or not.

Also remember that taking medicines is only one part of dementia care. The person with dementia also needs appropriate cognitive stimulation. For this you have to consider what is suitable for them and what interests them. Families should contact other resource persons who can share information and advice on the care aspects.

(Editor’s Note: See the detailed discussion pages on various care aspects on this website or contact the resources listed on the site for support. Or contact us if you don’t know where to start.)

DCN: Many families stop going to the doctor after a few visits. If they see a decline, they assume that the decline must be because of dementia, and no treatment is available.

Dr. Sudhir Kumar: Decline can happen for many reasons and is not just because of dementia.

Please note that people with dementia are more likely to experience deterioration in their cognitive functions and behaviour when they have a problem like an infection, pain, constipation, not having enough fluids etc. This kind of deterioration is treatable. Hence, it is important to have this checked out when a decline is seen so that necessary treatment can start.

You can contact a local physician (other than your main dementia doctor) when you see a decline and there also seems to be some other medical problem. Even if you consult your dementia doctor, they may refer the person back to a physician to rule out a current medical problem. Whoever you consult make sure they know the diagnosis of dementia and the person’s baseline level of functioning. If the physician consultation does not help, check with your dementia doctor.

DCN: How important is it to keep going for reviews to the dementia specialist? It gets difficult to take the person for such consultations as the dementia gets worse.

Dr. Sudhir Kumar: Review trips are important to be able to understand the current stage of the dementia and also adjust the medicines. The doctor may also change the medicines, adjust the dose, or even stop some medicines. The doctor remains familiar with the person with dementia and may also have other advice and observations. You may also need the doctor’s advice if the person has other serious medical problems and you need to coordinate between multiple specialties. So, please be regular about review appointments with your dementia doctor.

You may be able to go for review appointments without taking the person with dementia along if taking the person along is difficult. Ask the doctor if such an arrangement is acceptable. Many doctors agree to this type of review appointments if they find you a reliable informant.

But you will need to take the person along for the appointment if the doctor wants to repeat cognitive testing or mental status review. The doctor would also need to see the person if there is need to do a physical examination, especially for a new symptom or a side effect. Discuss your options with the doctor.

Thank you so much, Dr. CT Sudhir Kumar, for sharing detailed information about the diagnosis process and how families can prepare for it and handle it in this interview series. This will be extremely helpful for families.

Dr CT Sudhir Kumar’s email id is sudhirkumarct@hotmail.com. Please note that he does not do online consultation or diagnosis.

This interview is the concluding part of a four-part interview series. The other three 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.

[This is part of the expert interviews on this site. View the list of all interviews of health care professionals and volunteers.]
Note. This is an interview of an expert/ volunteer. The views expressed and the suggestions given are those of the interviewed person, and not a recommendation being made by Dementia Care Notes. Suitability and applicability of the suggestions remain the responsibility of the reader. For professional advice suitable for your situation, please consult an appropriate professional.

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

Home > Posts > Interviews of Experts > Diagnosis > The dementia diagnosis process, Part 3: Meeting the doctor and getting a diagnosis
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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 (Alzheimer and Related Disorders Society of India), 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, are there 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.

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.

DCN: 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.

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.

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.

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?

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.

[This is part of the expert interviews on this site. View the list of all interviews of health care professionals and volunteers.]
Note. This is an interview of an expert/ volunteer. The views expressed and the suggestions given are those of the interviewed person, and not a recommendation being made by Dementia Care Notes. Suitability and applicability of the suggestions remain the responsibility of the reader. For professional advice suitable for your situation, please consult an appropriate professional.

The dementia diagnosis process, Part 2: Preparing for the doctor consultation

Home > Posts > Interviews of Experts > Diagnosis > The dementia diagnosis process, Part 2: Preparing for the doctor consultation
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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 2 below, we discuss how families can prepare for their meeting with the doctor, such as the type of symptoms and other information to tell the doctor about and preparing the medical history file for the doctor. [note](Other parts of this four-part interview series are: Part 1, Part 3, and Part 4.)

Dementia Care Notes: What are the types of problems that the family should tell the doctor about?

Dr Sudhir Kumar: To notice and describe any possible dementia symptoms more easily, we can look at the symptoms under some broad headings like: memory problems, speech problem, behaviour and personality changes, impact on activities of daily living, psychological changes, and other symptoms. This information will give the doctor a reasonable idea of the problems being faced.

…we can look at the symptoms under some broad headings like: memory problems, speech problem, behaviour and personality changes, impact on activities of daily living, psychological changes, and other symptoms.

In addition to these, you may also have other concerns to tell the doctor.

Based on these and the person’s medical history and relevant investigations, the doctor will be able to decide whether these symptoms are because the person has some “cognitive impairment” causing the person to misinterpret a situation. The doctor will also get an idea of how these symptoms affect the person’s daily living. All this will affect the diagnosis, any medicines that may be prescribed, and advice on care.

DCN: Let us start with memory problems. What type of information do we need?

Dr. Sudhir Kumar: Share the type of memory problems faced, how they began, and how these problems affect daily living. Examples:

When putting together data on memory problems, also include accidents that happened or almost happened (“near misses”) due to memory problems. These will show how memory problems are affecting daily living.

  • How long has the person faced memory problems? Did these problems start suddenly, or did they increase gradually? If they grew gradually, were there also periods of sudden decline? And after any sudden decline, did the ability to remember return to the level it was before the sudden decline?
  • What kind of things does the person forget? Are these related to recent events (recent memory impairment) or to older events (remote memory impairment)? Examples of forgetting recent events are: forgetting what was eaten at breakfast, where the person went today, who visited them today, etc. Maybe the person even asks for food soon after having meals. Examples of remote memory problems are forgetting incidents from a few years ago.
  • Does the person misplace things? Note down some examples of these.
  • Is the person unable to remember names of family members? Is the person unable to recognise faces of people close to the person?
  • Does the person lose the way if going out?

When putting together data on memory problems, also include accidents that happened or almost happened (“near misses”) due to memory problems. These will show how memory problems are affecting daily living.

DCN: What do speech problems cover?

Dr. Sudhir Kumar: While thinking of speech problems, consider whether you have noticed any changes in speech. Some examples of type of things to tell the doctor:

  • Do you think the person is struggling for words when explaining or asking something?
  • Has the person been using words inappropriately, such as calling things by wrong names, etc.
  • Do you think the person has been having problems understanding what others are saying? Do these happen when the person is talking to one person only? Do these happen when the person is part of a group? Can the person follow conversations?
  • Since when have you seen these problems happening?
  • Is the person able to follow the story of a book or a movie or TV serial? For example, if the person cannot tell you what they are reading about, or if the person asks questions about things which were very clear in the story or are unrelated to the story.

DCN: You mentioned that the symptoms to share include behaviour and personality changes. Please explain this.

Dr. Sudhir Kumar: Put together examples where the person’s behaviour seemed strange or unusual. Compare the current behaviour with the person’s earlier personality/ behaviour to notice any change. Examples:

  • Does the person get more angry now?
  • Is there verbal aggression like yelling or using harsh language?
  • Has the person started using foul language as part of this behaviour change?
  • Is the person more aggressive physically? Has the person started hitting, slapping, pushing, punching, etc.?
  • Has the person become more stubborn now?
  • Is the person doing things that may hurt them or others? Examples: wandering out of home and not returning, or having difficulty coming back; erratic driving; leaving the gas burner open and not noticing the escaping gas.
  • Is the person finding normal activities more difficult? For example, the person may no longer be able to use the TV remote or a mobile phone, etc., the way they could earlier.
  • Are there changes in the person’s social behaviour and interests? For example, someone who was very social is no longer interested in meeting people, or someone who watched TV regularly is no longer interested in TV.

…tell the doctor if the person has starting behaving in unacceptable ways sexually, as these may be important symptoms. Examples are like the person exposing himself, making passes at others, using lewd gestures, etc.

Make sure you tell the doctor if the person has starting behaving in unacceptable ways sexually, as these may be important symptoms. Examples are like the person exposing himself, making passes at others, using lewd gestures, etc.

Tell the doctor if the person is having delusions or hallucinations. For example:

  • the person is behaving as if other people are trying to harm them or steal from them. The person may be suspicious without reason.
  • the person seems to be hearing voices when no one is around, or seeing things or people who are not there.

DCN: You had earlier explained that cognitive impairment is considered dementia when the person starts facing problems in activities of daily living because of the impairment. What does this mean?

Dr. Sudhir Kumar: Doctors want to know how the problems are affecting the person’s daily life. Put together your observations on things like:

Doctors want to know how the problems are affecting the person’s daily life.

  • Is the person independent for necessary daily tasks like batheing, eating, dressing, using the toilet, etc.?
  • If the person needs help, how much help is needed?
  • Is the person getting more dependent with time? Are there any physical problems making this dependence worse, such as arthritis?
  • How long have these problems been present? Did they start suddenly or grow over time?

DCN: Which other problems should we tell the doctor about?

Dr. Sudhir Kumar: Add any other problems the person may be facing. Examples include

  • visible and significant ups and downs in what the person can do or cannot do. The changes could occur in just a few hours or may happen every few days.
  • urinary incontinence (no control on when and where urine is passed).
  • problems with the way of walking or with balance.
  • recent changes in vision, such as the person is unable to see properly, or seems to be having difficult reading.
  • fits (seizures).

DCN: Is it also important to know when the symptoms started?

Dr. Sudhir Kumar: Yes. The doctor needs to know whether the symptoms are of sudden onset or have been gradually progressing.

Sudden onset of dementia symptoms can happen around the same time as some other health problem. Try to remember whether the symptoms have been present only for a few days or longer and how they started. One major example of sudden onset is when the problems are related to a stroke or a mini stroke. Note that a stroke/ mini-stroke needs emergency medical attention. Typical symptoms of a stroke-type onset are:

  • Weakness of one side of the body or a limb.
  • Slurring of speech.
  • Loss or reduced vision.
  • Drooping of corner of mouth.
  • Weakness of one side of face.
  • Confused behaviour.

When we notice problems with memory, speech, actions, and so on soon after a stroke, this may indicate vascular dementia. This type of dementia is called post-stroke vascular dementia.

In cases of sudden onset, doctors first look for immediate causes. They will try to address these to manage the symptoms, such as treating the stroke/ mini-stroke, adjusting medicines, handling the infection, handling dehydration and various acute medical problems, etc. The process of diagnosing and managing will be different for gradual onset.

Sudden onset of symptoms of cognitive impairment or worsening of already existing symptoms may also be seen when the person develops some additional health problems. Some examples are fever, difficulty passing urine, pain, constipation, falls, new medicines being added or some medicines being stopped or the dose being changed, or the person not having enough fluids or food. Often this other medical problem is treatable and addressing this problem will help in improving the symptoms of cognitive impairment.

In cases of sudden onset, doctors first look for immediate causes. They will try to address these to manage the symptoms, such as treating the stroke/ mini-stroke, adjusting medicines, handling the infection, handling dehydration and various acute medical problems, etc.

The process of diagnosing and managing will be different for gradual onset. So, please think about when the symptoms started and what has changed; before you visit the doctor.

DCN: Sometimes, some persons start showing problems after major life changes, like retirement, moving to a new city, a child moving away, death of someone close, and so on.

Dr. Sudhir Kumar: People are at a higher risk of developing low mood and depression following major life events. Depression can cause very similar problems to those seen in early stages of dementia. Depression can be treated quite effectively.

If there were any recent major life events, you will need to let the doctor know.

DCN: Regarding the person’s medical status and history, what information should the family give the doctor?

Dr. Sudhir Kumar: Be clear of any medical condition the person has, such as high blood pressure, diabetes, or high cholesterol. Collect the required diagnosis papers, prescriptions, recent test results and scans, etc., to share with the doctor. Collect past medical records. Arrange them so that you can locate and explain things when the doctor asks any questions or needs to see something.

If there are old consultations or brain scans or any consultations for neurological problems, make sure you take them along, arranged by date. Also let the doctor know about any instances of serious falls or head injuries. The doctor will also need to know about any past history of depression or other mental health problems.

Records of previous ECGs, scans, blood tests, etc. are also important because they help the doctor decide which tests need to be done/ repeated.

Make a list of all the current medicines and their doses. Also make a list of any medicines which have led to allergies or serious side effects in the person in the past. Please make sure that this list includes all medicines the person takes, because some medicines can cause cognitive side effects. Include any non-allopathic medicines and “supplements” in your list (Ayurvedic, Homeopathic, diet supplements, herbal supplements, etc.)

Thank you, Dr. Sudhir Kumar!

We will continue our discussion on the diagnosis process in Part 3.

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.

[This is part of the expert interviews on this site. View the list of all interviews of health care professionals and volunteers.]
Note. This is an interview of an expert/ volunteer. The views expressed and the suggestions given are those of the interviewed person, and not a recommendation being made by Dementia Care Notes. Suitability and applicability of the suggestions remain the responsibility of the reader. For professional advice suitable for your situation, please consult an appropriate professional.

The dementia diagnosis process, Part 1: Getting started and selecting a doctor

Home > Posts > Interviews of Experts > Diagnosis > The dementia diagnosis process, Part 1: Getting started and selecting a doctor
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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 1 below, we discuss some basics of how families can start the process of selecting a doctor and preparing for a visit, and some important terms related to dementia. [note](Other parts of this four-part interview series are: Part 2, Part 3 and Part 4.)

Dementia Care Notes: Family members sometimes see a person behaving differently or facing problems while doing normal tasks. But the family members are not sure whether it is just old age or stress or some medical problem. Some may even suspect dementia. What should they do?

Dr Sudhir Kumar: The important thing is to seek a diagnosis.

The important thing is to seek a diagnosis….Families should not assume the person has dementia just based on their impressions.

Because the family suspects dementia or something similar, they should look for a doctor who is sufficiently familiar with dementia. The doctor should be able to understand the situation and do the investigations and examination and then give a suitable diagnosis that explains the situation.

Families should not assume the person has dementia just based on their impressions. After the investigations, the doctor may diagnose the person as having “dementia”. Or the doctor may give a different diagnosis that explains the problems being faced.

DCN: Who can diagnose dementia?

Dr. Sudhir Kumar: Generally, a dementia diagnosis should be given by a specialist.

You can approach a specialist directly or ask your GP to refer you to one if you suspect dementia or something related.

However, many MBBS doctors may be able to diagnose dementia due to their experience and interest even if they don’t have any additional post-graduate qualification. Or they may suspect dementia and therefore refer you to a specialist who can do the required investigations and decide on a suitable diagnosis.

DCN: Which type of specialist should the family consult?

Dr. Sudhir Kumar: The specialists for diagnosing and managing dementia are neurologists, psychiatrists, and geriatricians.

Neurologists and psychiatrists are probably equally suitable for diagnosing most forms of dementia. Neurologists are usually more skilled for diagnosing some rarer forms of dementia, especially some forms seen more in younger people. On the other hand, psychiatrists have more skills to deal with behavioural and psychological aspects of dementia; they are trained for coping with challenging behaviours.

Geriatricians are doctors who specialise in treating older persons. They look at multiple problems that elders face, and this includes dementia. Most families in India cannot reach a geriatrician easily.

If a specialist (geriatrician, neurologist, or psychiatrist), is not available, you can look for a doctor who is an MD (post graduate) in general medicine. Such doctors usually practice as GPs or are in the medicine department of hospitals. They often have more skills than MBBS doctors for diagnosing dementia and can deal with issues associated with dementia.

DCN: What else should we keep in mind when selecting a doctor?

Dr. Sudhir Kumar: Doctors vary widely in their training, skills and interests to diagnose and manage dementia well. A lot would depend on the doctor.

To locate possible doctors, ask your GP for recommendations. Ask other families and related voluntary organizations for recommendations. Check for senior doctors in the neurology, psychiatry, and geriatrics departments of reliable hospitals.

Look at the doctor’s qualifications. Look for the way the doctor’s interests and specialisations are listed. See whether these include dementia and similar conditions. See if there are any special clinics and OPDs the doctor conducts. Check any reviews by families on websites that list doctors.

Here are some ways to know the doctor’s suitability: Look at the doctor’s qualifications. Look for the way the doctor’s interests and specialisations are listed. See whether these include dementia and similar conditions. See if there are any special clinics and OPDs the doctor conducts. Check any reviews by families on websites that list doctors.

Another option is to go to a family doctor who is familiar with the person and has been treating the person for many years. Such a family doctor may be able to understand the problems and guide you suitably. The doctor may refer you to a specialist.

Choosing a doctor also depends on availability and accessibility. Your options may be limited based on where you are.

DCN: Some hospitals and dementia organizations have “memory clinics” (or similar clinics). Are these also meant for diagnosis?

Dr. Sudhir Kumar: Memory clinics are, ideally, places where doctors and other professionals work as a team to assess a person and provide a diagnosis and give the person and family information and guidance on various aspects of treatment and care. They provide long term follow ups as well.

Unfortunately, India does not have many such memory clinics. The few clinics that are there differ a lot in what they offer and how they function.

However, a memory clinic may be a good place to go to for initial advice and assessment. The experts in the clinic may either diagnose or they will direct the family to a suitable doctor for diagnosis. Some of these clinics may also be able to give ongoing support or guide the family to some local resource that can do this.

DCN: How should the family prepare for their first visit to the doctor?

Families can put together information on the person’s history to prepare for the doctor visit. The main aspects of history the doctor looks into are how the person has changed in their “cognitive functions”

Dr. Sudhir Kumar: To give a diagnosis, the doctor will try to understand the person’s history and problems. Doctors do their own assessment, tests and investigations, and then arrive at the diagnosis.

Families can put together information on the person’s history to prepare for the doctor visit. The main aspects of history the doctor looks into are how the person has changed in their “cognitive functions”. (Editor note: The term “cognitive functions” is explained later). The doctor looks at the person’s ability to do the activities of daily living. Doctors also look at the health issues of the person, current medications, etc.

DCN: Please explain some terms we often hear in discussions around dementia: “cognition”, “cognitive function”, and “cognitive impairment.”

Dr. Sudhir Kumar: Cognition is often explained using its dictionary meaning as being “the mental action or process of acquiring knowledge and understanding through thought, experience, and the senses.”

A common example (of cognitive functions) mentioned in dementia discussions is “memory” (and remembering). But there are many other cognitive functions also. Examples are speech, understanding what others say, understanding the surroundings, learning new things, reasoning, evaluating situations, making decisions, etc.

Cognitive functions are the types of tasks that persons can do because of their cognitive ability. A common example mentioned in dementia discussions is “memory” (and remembering). But there are many other cognitive functions also. Examples are speech, understanding what others say, understanding the surroundings, learning new things, reasoning, evaluating situations, making decisions, etc.

Cognitive impairment: This refers to reduction (impairment) in some or all of the cognitive functions.

Persons who have mild cognitive impairment may stay at the same level of impairment, or they may improve over time, or get worse.

DCN: How does dementia fit in with these terms around cognition? What is dementia?

Dr. Sudhir Kumar: Dementia is when the person’s cognitive functions are impaired so much that the person starts facing difficulties in normal daily activities. They may not be able to do the tasks they were good at in the past. The quality of their work (or functions) may also start declining.

Dementia is a broad and general term that covers many possible combinations of symptoms. The symptoms are different from person to person. There are many conditions that can cause these symptoms. Some such conditions that people are familiar with include Alzheimer’s Disease, Fronto-Temporal Dementia, Lewy Body Dementia, Vascular Dementia/ post-stroke vascular dementia, etc.

Most people with dementia have cognitive impairment in the initial stages of the condition itself. But in certain conditions like frontotemporal dementia this cognitive impairment may not be noticed in the initial stages compared to other symptoms like behaviour changes.

Most people with dementia have cognitive impairment in the initial stages of the condition itself. But in certain conditions like frontotemporal dementia this cognitive impairment may not be noticed in the initial stages compared to other symptoms like behaviour changes.

In this context, also note that Mild Cognitive Impairment (also called MCI) is not the same as dementia. In some persons it can develop into dementia, but in others it may never progress to dementia.

DCN: Most dementia awareness campaigns explain dementia as “memory loss” and call it an initial symptom. They also call it a problem faced by the elderly. Does that mean families should go to a doctor only if some of the problems faced are memory related, and only if the person is old?

Dr. Sudhir Kumar: Though dementia is considered a condition affecting the elderly, it can occur in younger age groups as well. This is called younger onset dementia. It is less common.

‘difficulties in memory’ is the commonest symptom observed in people with dementia.

About memory problems: ‘difficulties in memory’ is the commonest symptom observed in people with dementia. However, in certain types of dementia, memory problems are not prominent in the initial stages. One example is Frontotemporal Dementia (FTD).

So, a family should approach a doctor for assessment if they notice changes in personality and behaviour that cause them concern. Also, please approach a doctor if you notice marked problems in speech and comprehension.

Thank you, Dr. Sudhir Kumar!

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.

[This is part of the expert interviews on this site. View the list of all interviews of health care professionals and volunteers.]
Note. This is an interview of an expert/ volunteer. The views expressed and the suggestions given are those of the interviewed person, and not a recommendation being made by Dementia Care Notes. Suitability and applicability of the suggestions remain the responsibility of the reader. For professional advice suitable for your situation, please consult an appropriate professional.

Dementia Care Notes