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

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]

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.

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.

The specialists for diagnosing and managing dementia are neurologists, psychiatrists, and geriatricians.

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.

…a memory clinic may be a good place to go to for initial advice and assessment.

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.

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

Dementia is a broad and general term that covers many possible combinations of symptoms. The symptoms are different from person to person.

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, Front-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. Parts 2 and 3 are already online and available here:

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.