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

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]

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

…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.

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.

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?

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.

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

  • 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?

  • 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 bathing, 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:

    One major example of sudden onset is when the problems are related to a stroke or a mini stroke.

  • 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 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.

Depression can cause very similar problems to those seen in early stages of dementia. Depression can be treated quite effectively.

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.

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.)

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. Parts 1 and 3 are already available at:

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.