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

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.

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.

…there are no definite diagnostic tests for dementia. Doctors give the diagnosis based on how they interpret the information available at that time.

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?

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.

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.

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.

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.

Also remember that taking medicines is only one part of dementia care. The person with dementia also needs appropriate cognitive stimulation.

(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.

Decline can happen for many reasons and is not just because of dementia…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.

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.

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.

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.