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. 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

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

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

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

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

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

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

DCN: What tests can a doctor ask for?

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

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

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

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

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

How will the doctor check for “cognitive impairment”?

Dr. Sudhir Kumar: Different doctors use different approaches.

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

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

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 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:

  • 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.

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

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.

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, 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.

<blockquote”>

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.

Use “Active Ageing” to age better and reduce dementia risk: part 2

Many people worry about how their physical and mental abilities will reduce as they grow old. Dementia caregivers also worry about their risk of getting dementia.

Ramani Sundaram, a neuroscience research scientist working at Nightingales Medical Trust, has designed and managed the “Active Ageing” program at the Nightingales Trust Bagchi Centre for Active Ageing (Bangalore). It is a holistic program that uses a multi-modal activity-based approach. It is based on the ThinkingFit study conducted in the UK, and aims to bring lifestyle modification and ensure health and happiness of the elderly, thus making ageing a positive experience. The focus is on minimizing the risk of dementia, controlling hypertension, diabetes, and depression, and preventing falls.

This interview series shares information and suggestions for persons interested in ageing well. [note] In part 1, we talked about program and its context and objectives, how participants are assessed before they join, and also listed the three components of the program. The first component, physical activity, was discussed. Below, in Part 2, we discuss the mental and social components of the program and talk about how persons who can’t leave home (like many caregivers) can adapt and use these. We also talk about the use of the program for persons mild cognitive impairment or early dementia.

Dementia Care Notes: Let’s move to the second component of your Active Ageing program, cognitive engagement (mental stimulation). What sort of mental stimulation do you include in this?

Ramani Sundaram, neuroscience research scientist: It is puzzling to see that it is general perception that body needs physical exercise to keep fit while brain fitness is not considered as important.

The brain needs mental exercise to stay active and not deteriorate.

…we work on different cognitive domains (areas) such as memory, concentration, language, perception, speed of processing, etc. Our activities are designed to be both engaging and meaningful. The idea is to make participants do cognitive activities that have positive effects on their daily functions.

In our program, we work on different cognitive domains (areas) such as memory, concentration, language, perception, speed of processing, etc. Our activities are designed to be both engaging and meaningful. The idea is to make participants do cognitive activities that have positive effects on their daily functions. These activities provide long lasting positive effects.

These cognitive areas are vast. There are many combinations that can be used to stimulate skill sets. For example, just looking at memory, we have several aspects to consider and combine, such as activities that improve visual/auditory memory, short term/immediate memory, verbal/nonverbal memory, and working memory. A well-designed program is therefore needed.

Our mental stimulation component is one hour every day, 4 to 5 days a week.

DCN: A variety of activities for one hour daily, most days a week is much more than the single daily Sudoku which many articles claim is all we need to do 🙂 Could you describe your mental stimulation session?

RS: As I mentioned earlier, many cognitive domains (areas) need to be stimulated for different kind of skill sets.

We divide our mental health routine depending on the cognitive domain. We keep selecting a focus for a week, and look at various subdomains of it during the days of that week.

A monotonous activity is not as stimulating as doing a different activity each time. One can do sudoku once in a while, but it is not very beneficial to do it every day. Novelty stimulates the brain better.

For example, in our “memory week”, we take up one subdomain of memory on each day. The subdomains can be visual/auditory memory, short term/immediate memory, verbal/nonverbal memory, and working memory. And in our “Behavioural flexibility activities week”, we would look at things like logical reasoning, decision making, speed of processing, coordination, and attention activities.

The reason behind tapping different activities each time is to do something different. A monotonous activity is not as stimulating as doing a different activity each time. One can do sudoku once in a while, but it is not very beneficial to do it every day. Novelty stimulates the brain better.

The duration of around an hour may sound too much, but if the activity is engaging, participants remain engrossed and even want more. Some activities are paper pencil based, some are Power Point based and some are sign language based. The instructor takes additional effort to make each activity more engaging.

DCN: Are these mental exercises/ activities individual or group-based?

RS: We use both modes. Most of the times our activities are group based, but we also have some individual activities.

For example, say we have group of 15 members, we give each member a different set of unrelated 10 words. Each member has to make a story using these ten words then we divide them into 3 groups. Each group now has 5 different stories. We ask each group to combine all stories in to 1. Now we have three stories which are either enacted as mime /drama. These activities tap the creativity area and also allows members to interact with each other.

DCN: What similar approach or set of activities do you suggest for homebound persons who cannot leave home to regularly attend a program like yours?

RS: There are a set of activities that can be done at home.

One of the simplest activity is to write with a non-dominant hand (use the left hand if you are right-handed, or use the right hand if you are left-handed)…Writing activities can be further divided into mirror writing, reverse writing, and blind writing.

One of the simplest activity is to write with a non-dominant hand (use the left hand if you are right-handed, or use the right hand if you are left-handed). It is a simple, yet very effective activity. Writing activities can be further divided into mirror writing, reverse writing, and blind writing.

Another example is reading a short story and then trying to rewrite it the next day nearly the same way as it was read.

There are many more such activities. For example, one good way to improve attention is doing a “word search” game with a timer on. Another activity is making a word chain (making a new word with ending alphabet of the first word) which may be done using related words or unrelated words. Solving matchstick puzzles, making geometrical shapes with matchsticks, etc., are some other activities to start with.

DCN: Many caregivers ask us about software packages they can use — do you have any comments about them?

RS: Many software packages are available for cognitive stimulation. The activities differ depending on the package. Most of these packages are good but the issue is that there are limited types of activities in each such package. It is therefore advisable to look for packages that have more number of activities and can be upgraded or lowered as per the abilities.

We have found that unlike physical activity, when someone find mental activities challenging they tend to give up, hence it is important to select activities based on interest and speed.

Some activities are available for free in the app stores. While these are not put together as a package, they can be good as standalone activities. Examples are Hangman, Word search, Cows and Bulls, Memory Buzz etc.

DCN: How can we keep adjusting our personal program so that it remains effective as mental stimulation?

RS: Changing a routine and comfort activity might be difficult initially, but it’s beneficial as we go along.

It is not necessary to do all activities at a time. Activities can be assigned weekly. A particular week can be for computer/phone based activity while the next week can be for Sudoku, crossword etc. Sometimes, you can just juggle the routine.

The most important aspect is to find activities that are enjoyable, not just ‘useful’.

The most important aspect is to find activities that are enjoyable, not just ‘useful’. If they are enjoyable they can engage a person for long. Motivation to do them can also be improved by involving family members and friends.

DCN: How do you know if a mental stimulation routine is effective? How would a homebound person know?

RS: We do periodic assessments that help us study the effect of mental stimulation routine.

Sometimes the activities themselves work as assessment tool. Say someone is able to remember 15 items in a memory game, and after three months this participant is able to remember 25. Or someone is able to finish the same cognitive task more quickly. Many times, the participants themselves notice the improvement in their memory. They find they are better at remembering names and words, or are faster in understanding and doing things (better speed of processing).

Similarly, persons doing such mental stimulation activities at home can use tasks to assess their improvement. Take the example of a coding activity where each alphabet is given a number, say A is 1, B is 2 and so on, and the activity requires writing a small paragraph using this numeric code instead of alphabets. Suppose they are doing a coding activity in half an hour now. After a month or two, they can check how much time the activity takes. This will show if there is improvement.

It is important to understand that, unlike physical activity, improvement in mental skills is not as evident to the person or others. But the person can notice the impact through improvement in functional activities, the sort of normal activities they do regularly for themselves or others.

DCN: The third component of your program is socialization. Socializing is often difficult to achieve for someone like a caregiver who is homebound and cannot go out to meet people. Any suggestions for this?

RS: Socialization is perhaps the most important aspect of the program. Meeting different people and talking to them is highly stimulating. This can be challenging for homebound persons though it is surely important for them to socialize.

Some possibilities: Become a member in a club. It may not be possible to go most of the time, but try to start with once or twice a month. Taking part in a group activity is a good way to start. Also. though not the same as face-to-face meetings with persons, options for homebound persons include social media, phone calls, etc.

There aren’t any strict parameters to determine useful social activity; it is only about enjoying or benefiting from the group.

Our elders include introverts and extroverts. When they go out to watch a movie /picnic they all enjoy. Many may still not know each other but being in a group is a positive experience for them all.

DCN: Your program includes seniors with dementia. How have you helped seniors without dementia to understand and feel comfortable with those with dementia?

RS: We start our program by introducing all participants about the need of the program. This includes a brief session on dementia.

Our “active ageing centre and our dementia day care centre are both at the same premises. This enables our program participants to see and understand their peers with dementia. The briefing and continuous information update about dementia and its behavioural aspect also helps the participating seniors to understand their friends with dementia better. We also have get-togethers, parties, and social events that include both sets of members and thus set the stage for interactions.

We have been successful in making program participants understand that seniors with dementia can also contribute in many activities. Our program participants view dementia like any other age-related issue (diabetes, hypertension, etc.), just one where the manifestation of symptoms is different.

DCN: Dementia risk reduction is one of your objectives. Can the physical, mental, and social stimulation of a program like yours reduce the risk of dementia?

RS: Our aim is to work on the modifiable risk factors and reduce the risk of dementia.

Decades of research has shown that vascular risk factors and inactive lifestyle are associated with dementia. It remains a plausible hypothesis that mental stimulation, social engagement and physical activities have a preventive effect on age related conditions. Furthermore, activities of the sort included in our program have been associated with several outcomes like a lower death rate, better cognition, fewer illnesses, and increase in general well-being. An engaged lifestyle during the 60’s has also been associated with a longer life.

Having said that, we have to also understand that a lot more research is needed to understand dementia better. These programs are one of the ways to explore the potential for dementia prevention or achieving better quality of life as people age.

As of now there are some risk factors established for dementia, and our program works to reduce those risk factors. The ThinkingFit research study on which our program is based, has shown encouraging results in risk reduction, and we have been able to replicate similar results in a larger cohort.

DCN: Can your program benefit someone who already has mild cognitive impairment? Or someone with dementia? How is the program adapted for their participation?

…people with MCI/dementia…do many social activities with the other groups, but they do the physical and cognitive activities in this special separate group. This allows us to do the activities according to the capacity and potential of these people.

RS: The active ageing program can be very effective for people with mild cognitive impairment (MCI) and for people with dementia (early stages).

We have a separate group for people with MCI/dementia. They do many social activities with the other groups, but they do the physical and cognitive activities in this special separate group. This allows us to do the activities according to the capacity and potential of these people. In a combined session, the people with MCI/dementia tend to feel overpowered by the others. A separate group gives them a more encouraging environment.

In general, activities are made easier for them and they enjoy when they are able to complete an activity despite their limitations. As their abilities deteriorate, we adjust the activities so that they can still do and enjoy them given their current potential.

DCN: Do you have any final words for persons who want the benefits of a program like “Active Ageing” but cannot enrol for regular participation because they are homebound?

RS: Our Active Ageing program is a highly structured program driven by standard protocols and trained instructors. It may not be possible to entirely use the program at home, but some aspects of the program can definitely be adopted. Some aspects of all three components can be done at home.

…this is a lifestyle modification program and the benefits are not evident immediately. However, as people age, the benefits of the activities tend to show. The key is to start, change, and sustain the activities so that they are both meaningful and engaging.

As I explained before, even if a person is homebound and cannot attend the program at the centre regularly, the person can initially visit the centre for an assessment and guidance about what they can do safely and effectively at home. At the centre, they can understand and practice the suitable exercises under the guidance of the physiotherapist till they do them properly and safely, so that they can start doing them at home. They can also revisit the centre periodically to confirm they are doing the exercises properly and also get any new advice for using elements of our “Active Ageing” program given their situation .

Remember that this is a lifestyle modification program and the benefits are not evident immediately. However, as people age, the benefits of the activities tend to show. The key is to start, change, and sustain the activities so that they are both meaningful and engaging.

Thank you very much for this detailed explanation of your program and its underlying concepts and design, and how it benefits elders, even those with mild cognitive impairment or early dementia. It was also very useful to learn how homebound persons like many family caregivers can benefit from some of its components. Readers would definitely find it useful to age better and also reduce their dementia risk!

Read part 1 here.)

Ms Ramani Sundaram may be contacted by email at ramanisuba@gmail.com. The centre running the program described here can be reached by contacting Nightingales Trust Bagchi Centre for Active Ageing, Bangalore (Email: nbcaa@nightingaleseldercare.com Phone: 080-69999775).

Note: In this interview series, Ramani Sundaram shares information and suggestions based on her Active Ageing program. Before starting any exercise program, please consult your doctor as appropriate.

[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.

Use “Active Ageing” to age better and reduce dementia risk: part 1

Many people worry about how their physical and mental abilities will reduce as they grow old. Dementia caregivers also worry about their risk of getting dementia.

Ramani Sundaram, a neuroscience research scientist working at Nightingales Medical Trust, has designed and managed the “Active Ageing” program at the Nightingales Trust Bagchi Centre for Active Ageing (Bangalore). It is a holistic program that uses a multi-modal activity-based approach. It is based on the ThinkingFit study conducted in the UK, and aims to bring lifestyle modification and ensure health and happiness of the elderly, thus making ageing a positive experience. The focus is on minimizing the risk of dementia, controlling hypertension, diabetes, and depression, and preventing falls.

In this two-part interview, Ramani explains the program’s concepts and components, shares the benefits seen in participants, and discusses how some elements of the program can be used by people who can’t leave home (like many caregivers). [note] Part 1 below introduces us to the program and its context and objectives, how participants are assessed before they join, and the three components of the program. The first component, i.e., physical activity, is also discussed.

Questions/ Comments by Dementia Care Notes: Please share your perspective on ageing in our society, which is the context within which your program is designed.

Ramani Sundaram, neuroscience research scientist: Longevity is here to stay and ageing is a natural phenomenon. However, ageing also brings anxiety of various age-related conditions like cardiovascular diseases and memory loss (dementia). Age-related conditions are mostly not treatable. They require lifelong management. Costs associated with managing such disabling conditions are high. Most people are therefore scared of problems they fear ageing will bring, such as decline of physical and mental health, reduced social connections, and possible financial problems.

Our experience of ageing depends on our surroundings. Unfortunately, our surroundings promote ageism. They make ageing seem a negative experience. For example, cosmetics are promoted to look younger and anti-ageing creams are heavily advertised. We do not notice that older people have their own beauty and don’t need special cosmetics to make them look younger. The media also portrays older people as frail and fragile, requiring help all the time.

All this makes growing older seem undesirable, and so, in our current surroundings, most people are anxious about getting older. Programs like our Active Ageing program use a systematic approach to improve the ageing experience.

DCN: Please give us a brief introduction to your Active Ageing program

RS: The fact is that improvement of health and well-being is possible at any age.

Our “Active Ageing” program is designed to enable older people to realize their potential for physical, social, and mental wellbeing. It is a systematic approach that includes physical activity and cognitive engagement in a social environment.

Our “Active Ageing” program is designed to enable older people to realize their potential for physical, social, and mental wellbeing. It is a systematic approach that includes physical activity and cognitive engagement in a social environment. The aim of the program is to help participants age well— this doesn’t equate to becoming a younger version of themselves but to enjoy the maximum of the current abilities and to dismantle ageism.

Our program has been functioning at the Nightingales Trust Bagchi Centre for Active Ageing, Bangalore since October 2014. Till end 2016, over 350 participants have benefitted through this program. They have been in the age-range of 50 -100 years and they attend it three days a week. All participants undergo periodic assessments every three months. A minimum of three months of active participation is required to measure the benefits of the program. Data is gathered to evaluate and confirm its effectiveness with respect to specified parameters of health, functionality and well-being. The program is now also functional at some other centres in Bangalore.

Our program is an ongoing program. Some participants stay with the program. Others take it for three months, or six months, or a year, depending on their schedule. Some participants tend to take a break and re-join later.

DCN: What is your program based on? Why is it called “Active Ageing”?

RS: “Active Ageing” is an approach that illustrates how people can become healthier and happier while they age, compared to how they were earlier. Our program design fits into the official definition of Active Ageing by WHO (see box).

“Active ageing is the process of optimizing opportunities for health, participation and security in order to enhance quality of life as people age. It applies to both individuals and population groups.” (From: WHO’s page on Active ageing Opens in new window)

We started this program because we wanted a lifestyle modification intervention to reduce the risk of dementia. Elders may not be interested in something called “dementia risk reduction” either because they are unaware of dementia, or because they consider it stigmatizing. By calling our program “Active Ageing” we reach and benefit many more elders. Also, “Active Ageing” is an acceptable and positive term and conveys the essence of what we are doing.

Our design is based on the ThinkingFit Study, a three-year research carried out by Dr. Thomas Dannhauser and his colleagues from The North Essex Foundation Trust and University College, London. This team developed a program which combines physical, social and mental activities in a fun way that keeps the elderly active. This study showed significant improvement in the participants’ physical fitness, cardiovascular health, memory, and quality of life. (see footnote for the reference paper)

DCN: “Active Ageing” is a phrase we see more and more in use by centres and programs. Are all these the same program? If not, how does one decide between them?

RS: Yes, there are now many active ageing centres promoting the concept of ageing well, which is encouraging. The programs offered are different and depend on who is offering them. I suggest that people look for something where there is equal importance to physical activity, mental stimulation, and social engagement.

Our Active Ageing program is a standard program which includes physical, cognitive, and social parameters that are essential components of the term “Active Ageing”. Our program is evidence-based, data driven, and piloted. People can therefore compare it to other active ageing programs to decide whether they want to try it.

DCN: What are the main components of your Active Ageing program?

RS: Our program looks at various age-related problems and how we can reduce the risk factors for these (or manage them better).

For example, most cardiovascular risk factors are modifiable. They can be prevented and managed through activities which include physical exercise, cognitive stimulation, and social interaction. We also know that after retirement, people may become less active physically and mentally, and may become more isolated socially. So, we aim to prepare people above the age of 60 years to participate in new activities and facilitate substantial lifestyle change.

Our hypothesis is that mental stimulation, social engagement, and physical activities have a preventive effect on age related conditions. This hypothesis is supported by scientific literature, and these activities have been associated with outcomes like enhanced cognition (improved mental and intellectual abilities), lower morbidity (reduced change of illnesses), and general well-being.

The main components of our program are:

  • Physical activity: These include aerobics, chair based exercises, flexibility and strength training, dance routines; resistance exercises, and fall prevention exercises.
  • Cognitive Engagement (mental stimulation): Activities in this component are designed for various cognitive processes such as memory, executive function, language, visuospatial abilities, speed of processing, etc.
  • Socialization: The most important aspect of the program is socialization and thus all physical and cognitive activities are done in a group. There are exclusive social engagement programs which are mostly fun-driven, such as antakshari and musical chairs, etc. We also organize group outings.

DCN: Please describe the physical exercise component.

RS: The main aim of the physical activity component is to ensure that elders feel good after the session. They gradually enjoy health benefits through better management of cardiovascular parameters. The goals of the physical activities differ according to the regime followed on a particular day. We provide a variety of exercises that can be done by anyone irrespective of their medical/physical condition/history. The exercise intensity is adjusted based on the individual’s capacity and medical history.

Many older people initially found the concept of a gym an unsuitable for their age. However, as they started using various equipment, their perception about using a gym changed.

Our exercises include:

  1. Chair based exercises: This is the core physical activity that we find highly beneficial for the elders. This is a part of cardiovascular regime. It’s a very intensive workout and allows people to undergo good training while sitting on the chair. It is one of the safest types of exercises and at the same time the most enjoyable for the elders. We provide varieties of chair exercises by including resistance bands, free weights, etc.
  2. Elders Gym: Our Centre has an exclusive gym designed for the elders. Many older people initially found the concept of a gym an unsuitable for their age. However, as they started using various equipment, their perception about using a gym changed. The gym sessions allow us to make elders do exercises at their target heart rate for 30 mins. We are able to monitor their heart rates during these sessions, and that gives us and the elders a better understanding of their cardiac endurance.
  3. Yoga: As we all know, yoga has many benefits. Also, it is a very popular concept among elders. We have customized the asanas to suit the requirement of the age groups of our participants.
  4. Strength and Endurance: We have various workouts to enhance the core strength and endurance among the elders.
  5. Off Routine Cardio: These include dance aerobics, cardio kick boxing, and step based balance training.

DCN: What is the structure of a physical exercise session? How often is this done?

RS: The session is usually for 50 mins. It has 10 minutes of warm up, 30 minutes of intensive work out, and 10 minutes of cool down. Physical activity is done three days a week (every alternate day), and is under the guidance and supervision of the physical trainer (trained physiotherapist).

The sessions are done in a group of 15 persons. This includes people from different age groups which increases the sense of involvement and motivation for all participants. The sessions are enhanced by Bollywood beats (old songs and sometimes new ones, based on what they demand).

Doing any exercise for an hour can be boring and may seem undoable, but when done in a group, it becomes an enjoyable experience. In our groups, members actively participate by counting with instructor, motivating each other, and singing songs in absence of music and use many such ways to remain cheerful and active. They enjoy the workouts.

DCN: Sounds great! Can you share some preliminary results of how this physical exercise component has affected seniors?

We get feedback from them and their family about reduction in blood sugar, blood pressure, cholesterol, etc., which, in turn, results in their doctors reducing their medicine dosages.

RS: One thing is that we have received feedback from the participants about the benefits they have experienced. They tell us they feel more energetic and happy as they do these activities regularly. They are also able to manage their cardiovascular conditions better. We get feedback from them and their family about reduction in blood sugar, blood pressure, cholesterol, etc., which, in turn, results in their doctors reducing their medicine dosages. This reduction of dosage /monitoring is done by their own GP – we get the information from the family and update our records for the changed dosage.

As the program is evidence-based, we also gather data for our own analysis.

Our preliminary results have been encouraging. We have seen substantial improvement in physical well-being and cardiovascular fitness in the parameters we have been monitoring. These include the fitness index which serves as a measure for cardiac endurance, blood glucose levels, and BMI. Other parameters where we found significant changes are weight management, balance, and flexibility. Most of the times these improvements reflect in their medical reports (from their own doctors), which can confirm/ supplement our observations.

DCN: What type of examination and analysis is needed to decide on an individual’s program?

RS: All the older people who register for the program undergo a compulsory initial assessment. This includes physical, cognitive, and medical assessment.

The physical assessment is done by a physiotherapist while the medical assessment is done by a doctor. People need to bring their past medical reports and current list of medications. The physical and medical assessment covers detailed medical history, basic parameters (such as BMI, FAT%, RBS, BP, and target heart rate), modified step test results, and a general review by our centre’s physician. The physician assessment is done fine-tune the individual’s physical activities.

Most of the exercises in our program can be done by all older persons. However, our physiotherapist notifies each individual about the precautions to be taken as per the individual’s physical and medical limitations. Exercises are sometimes modified to be more suitable for the individual. Individuals are also reminded of these precautions and modifications when they are doing the exercises.

In our cognitive assessment, we look at the participant’s cognitive ability in various cognitive areas. This includes visual and auditory divided attention task, long term and short-term memory task, verbal fluency, visuospatial, and working memory task. The tools used are ACE-r, Digit Span, CVLT and TMT. In addition, the WHOQOL-Bref (WHO quality of life scale) is used to measure quality of life and everyday activities.

DCN: What check-ups do homebound persons (like many caregivers) need to start such exercise at home? What sort of training and supervision do they need, and how can they set up their home for the exercise?

RS: Anyone starting any exercise program needs to undergo a proper check-up and get suitable advice just like any participant in our program. If a homebound person wants to start such physical activities, they can approach the centre and get themselves screened. This will allow them to interact with the physiotherapist to understand the Do’s and Don’ts’.

It is ideal to do the prescribed physical activities under the supervision of physiotherapist. Homebound persons such as family caregivers can probably first attend some sessions at the centre before they start doing them at home. If they can make time, may be couple of hours a week, to undergo a few sessions after assessment, the physiotherapist can understand their potential and limitations, and explain the proper way of exercising and any risks and cautions involved. Thereafter, they can do some exercises at home. They should stay in touch with centre for periodic assessments/feedback.

Some simple exercises can be done at home, and these can be demonstrated and explained by the physiotherapist. These include walking at home, chair exercises, and free weights. Many heart rate monitoring devices are now available in the market. These can help people exercise at their target heart rate. Chair exercises only need a sturdy chair, and walk at home needs non-slippery flooring and some minimal space. American Heart Association has the walk at home regime that is available online (see box). And free weights may also be used–up to 1kg can be used (you can also use half/one litre water bottle). We advise wearing sport shoes during such workouts.

The American Heart Association explains how to start a walking program. It discusses how to get ready, what techniques are used, how to pick up pace, and how to remain safe. See their page: Walking 101 Opens in new window)

… warm up and cool down are very important and should not be skipped when doing the exercises at home.

Exercises using resistance bands and stability balls are better done under supervision as the chances of injury are high. So, they may not be suitable for doing at home. Again, I strongly recommend that the person visit the centre and see the exercise steps and understand the benefits and risks associated. They can spend a couple of hours a week for this at the centre before starting doing these at home. And I want to emphasize that warm up and cool down are very important and should not be skipped when doing the exercises at home.

In part 2 , we discuss the mental and social components of the program and talk about how homebound persons can adapt and use these. We also talk about the use of the program for persons with mild cognitive impairment or early dementia.

Reference: *(Dannhauser, Thomas M., et al. “A complex multimodal activity intervention to reduce the risk of dementia in mild cognitive impairment–ThinkingFit: pilot and feasibility study for a randomized controlled trial.” BMC psychiatry 14.1 (2014): 129.)

Ms Ramani Sundaram may be contacted by email at ramanisuba@gmail.com. The centre running the program described here can be reached by contacting Nightingales Trust Bagchi Centre for Active Ageing, Bangalore (Email: nbcaa@nightingaleseldercare.com Phone: 080-69999775).

Note: In this interview series, Ramani Sundaram shares information and suggestions based on her Active Ageing program. Before starting any exercise program, please consult your doctor as appropriate.

[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.

Home care for late stage dementia, Part 6: Tube feeding and related decisions

Persons in late-stage dementia are almost totally dependent, confined to a wheel chair or a bed, and have serious memory problems and physical complications. In India, care for persons in this stage is usually done by family caregivers, and can be very challenging.

Dr. Soumya Hegde is a Bangalore-based Consultant Geriatric Psychiatrist. She has extensive experience in supporting people with dementia and their families through all stages — for persons living in full-time facilities as well as for persons being cared for at home by their families. Dr. Hegde completed her training in Geriatric Psychiatry in the UK. Her work experience includes seven years as Associate Director of the highly reputed full-time facility, Nightingales Centre for Ageing and Alzheimer’s (Bangalore). In this series of posts, Dr. Hegde discusses various aspects of home care for advanced dementia, and provides useful information and several practical suggestions.[note]

Last time, we discussed eating and swallowing problems at length. In this concluding part of the interview series, we discuss tube feeding and related decisions and their consequences.

Questions/ Comments by Dementia Care Notes: Last time, we discussed that tube-feeding is an option for persons having setbacks in their ability to eat and needing temporary corrective action, as well as for persons who cannot swallow because of advanced dementia. In order to decide on tube-feeding, families need to understand the two types of tube-feeding are — Ryles (nasogastric) tube and PEG (Percutaneous endoscopic gastrostomy) tube—and their pros and cons.

Could you give us a simple explanation of a Ryles tube?

Dr. Soumya Hegde (Consultant Geriatric Psychiatrist): A Ryles tube is a nasogastric tube. It goes through the nostril into the stomach. One end of the tube is outside the nostril, and the other end is in the stomach. The tube is secured by tape on the nostril so that a sufficient length of the tube remains outside. A cap is used to close the outside end. Food is given through this tube by removing the cap and inserting a syringe with liquid food, which flows into the stomach using gravity.

A Ryles tube can be inserted at home by a doctor or a nurse.

A Ryles tube can be inserted at home by a doctor or a nurse. It is a simple procedure that nurses are trained to do it, but you can tell the agency to send a nurse who has training and practice for this.

The important thing is that the family must learn how to feed through the tube.

DCN: How long can a Ryles tube be used?

Dr. Hegde: You need to change the tube regularly, maybe every two or three weeks. Your doctor will suggest what is suitable. A nurse can do this change at home.

You also have to use a new tube if the tube gets pulled out. You can’t re-insert a tube that has been pulled out.

With proper replacement and care, Ryles tube feeds can be continued for a long time. I’ve had persons on Ryles tube for one to two years.

DCN: How do we feed the person using a Ryles tube?

Dr. Hegde: Only liquid food can be given using a Ryles tube. The food consistency should be such that it can flow down the thin Ryles tube by gravity. That means you have to blend the food, sieve it, and dilute it. Otherwise the tube will get clogged. About frequency: your doctor will advise you on this, but usually you have to give food every two hours, around 150 to 200 ml.

You have to be trained on the feeding procedure. You have to practice it in the presence of the nurse till you can do it properly.

For example, before every feed, you have to check that the previous meal has been digested. You check the stomach contents by pulling out a bit using the syringe. It is called aspiration, and you need to learn it from the nurse. If the last meal has not been digested, you need to wait before feeding. Also, before the feed, you have to check the tube has not been displaced. Sometimes if the person coughs, the tube comes out of the stomach and coils inside the throat.

The person has to be upright for the feed, and remain upright for some time after the feed, at least fifteen to twenty minutes. Otherwise the person may regurgitate and swallow their vomit.

The procedure for the actual feeding involves many things, like when to kink the tube, when to straighten it, how to put food in the syringe, how to ensure air does not go in, and so on

The procedure for the actual feeding involves many things, like when to kink the tube, when to straighten it, how to put food in the syringe, how to ensure air does not go in, and so on. Make sure anyone who feeds the person can do it properly.

DCN: Can you share some examples of food given using a Ryles tube?

Dr. Hegde: Use a mix of foods to get a balanced meal—like ragi milk, mixed vegetable soup, spinach juice, Ensure, fruit juice, Protinex, daal ka paani, things like that. Be careful about the consistency. The nutritional value of the food is actually very low because it is mainly water.

DCN: The other type of tube-feeding is the PEG (Percutaneous endoscopic gastrostomy) tube, where food is put directly into the stomach. How is a PEG tube inserted?

Dr. Hegde: A PEG tube involves creating a small hole into the stomach. Insertion is done in a hospital. It is a simple day procedure where an endoscopy is used to guide the procedure, a hole is made at the correct place, a tube inserted, and stitching done around the hole.

Families need to know about “tube care” for PEG tubes—the regular cleaning of the area around the hole they must do so that the area does not infected.

Families need to know about “tube care” for PEG tubes—the regular cleaning of the area around the hole they must do so that the area does not infected.

If the person fiddles with the PEG tube, it can be strapped into position so that the person doesn’t reach it. A folded dupatta or some other cloth can be used.

DCN: How often do PEG tubes have to be replaced? Also, suppose the person pulls out a PEG tube?

Dr. Hegde: Under normal situations, if well cared for, PEG tubes can stay in place for really long. They only need to be replaced if they look dirty or there is a break or any other concern at the opening. The person has to be taken to the hospital for this.

PEG tubes can also be pulled out by the person. Of course, a pulled-out PEG tube cannot be reinserted, so you have to go to the hospital to get the person checked up and also get a fresh PEG tube inserted. If the person is repeatedly pulling out the PEG tube and none of the measures to secure it have been successful, you may need to reconsider the tube feeding decision itself, or at least see if you want to switch to Ryles tube.

DCN: Any other tips to keep in mind when using tube feeding?

Dr. Hegde: Since there is no food intake through the mouth in most cases of tube feeding, you therefore have to make sure the mouth remains moist. Use moist cotton or a sponge for this, maybe before and after meals.

Also, remain alert about the output—there should be enough urine, and the person should not get constipated.

DCN: When is a Ryles tube used, and when is a PEG tube used?

Dr. Hegde: Ryles tube insertion is much easier and can be done at home. A Ryles tube is the choice for temporary feeding situations. For example, when someone needs tube feeding due to an illness affecting their nutrition, or when you are trying to maintain the person’s nutrition while waiting for medication to take effect. A Ryles tube is usually the first option even for genuine swallowing problems when you still trying to see whether you need it long term.

PEG tubes are considered when you believe that the person will not be able to start swallowing again and need a long-term solution.

One plus point of PEG tubes is that giving food is easier. A Ryles tube is thin and needs thin consistency food, so food is considerably diluted. A feed takes more time. The PEG tube is wider and food given using PEG doesn’t have to be as thin as that we give using Ryles tube. Feeding takes less time. Another thing is that a PEG tube can be concealed and may be more aesthetically pleasing.

Maintaining the tube can be a problem in the case of PEG, not just because of the care required to avoid infection, but also because tube replacements and pulled-out tubes require hospital visits.

Maintaining the tube can be a problem in the case of PEG, not just because of the care required to avoid infection, but also because tube replacements and pulled-out tubes require hospital visits.

DCN: Many families rush into the tube feeding decision if their loved one starts eating less. But once a family starts tube feeding, they find it difficult to stop it even if they feel such feeding is prolonging a situation and is uncomfortable for the person.

Dr. Hegde: The decision to opt for tube feeding should not be taken in a hurry. It is better that you first try all the other things, like feeding in smaller quantities, feed whenever they want, and all that.

Counselling is a must before choosing tube-feeding.

Talk to a family that has gone through this process and understands the consequences of putting in a tube.

Insist that your doctor tells you the pros and cons of various tube-feeding options. If possible, also speak to somebody who is not a doctor. Talk to a family that has gone through this process and understands the consequences of putting in a tube. Talk to a social worker who understands the situation. This information-gathering is important because, as you said, once you put the PEG or Ryles tube, not many people have the heart to say, let’s remove it.

DCN: Suppose a person with dementia had earlier told the family that she would not like to be tube-fed. Suppose the family wants to respect this wish when the person develops swallowing problems. That means that they will not be able to get enough food into the person. The end will come. What can you suggest for families facing such a scenario?

Dr. Hegde: Families may decide against tube-feeding for many reasons. Maybe the person had clearly spoken against tube-feeding when she was cognitively alert. Or maybe you have seen research that says tube-feeding does not improve the quality of life in end-stage dementia. Maybe you feel the person has suffered enough and such feeding is pointless extension of life.

A conversation with the doctor is very important in such a situation. Talk to a doctor who knows the person with dementia and knows you. If the doctor seems uncomfortable or doesn’t seem trained to talk about tube-feeding decisions, look for a doctor who is familiar with palliative care. Discuss with other family members.

Opting against tube-feeding is a difficult decision. Sometimes one family member is ready for a no-tube decision, but others are not. Sometimes family members have conflict and blame around the decision. That makes the decision difficult. But it can also be difficult if everyone leaves the decision to one person.

Sometimes when one parent is looking after the other parent, the children just tell the parent, it’s your decision. I tell them, please don’t just tell your Ma that it’s her call. It may be her decision, but it is also your responsibility to be there for her in that decision. Make sure you also say that Ma, whatever you decide, we are with you.

What usually happens is, when there is disagreement or when family members leave the decision to one family member, that family member just opts for tube feeding. They feel it is a safer decision, one without the chance of guilt or the chance of accusations later.

For someone who has to decide not to proceed with tube-feeding, I’d say, try not to make it just your decision. Try to have someone who will hold your hand, who can remind you that the person has suffered enough and can be allowed to move on. The presence and support of someone else matters. It could be a nurse, a social worker, a friend, anyone. Because when you are watching kith and kin suffer like this, you don’t know whether you made the right decision. You need someone on your side.

DCN: Is there something else you’d like to say to families opting against tube feeding?

Dr. Hegde: In late-stage dementia, when the dementia has advanced so far that the person cannot swallow anything, often the problem is not just about food. The person will be having many problems. Cognitive impairment will be very high. In this stage, persons don’t show signs of pain, and don’t express hunger. They engage less. The care focus moves to palliation. You may do things like cutting out on some life-prolonging medications. You look for ways to make things more comfortable for the person. It is not sure how long it will take, but it seems clear that the person is dying.

All this is very difficult for families to see, but the person may not be suffering. Some families opt for giving IV fluids at this stage to give some comfort. It depends on what the family wants.

…once a person has swallowing difficulties, if you are not feeding them using tubes, then you are feeding through the mouth. They are going to cough. There’s a high risk of aspiration.

Coming back to feeding–once a person has swallowing difficulties, if you are not feeding them using tubes, then you are feeding through the mouth. They are going to cough. There’s a high risk of aspiration. Give what you can give using a suitable consistency–the semi-solid, mashed consistency, not liquids. Give them smaller quantities. Don’t worry about how much food is going inside. Maybe instead of four bowls of food a day you can give only one. You have decided against tube-feeding, so be okay with it. Don’t fret about it, don’t get anxious.

Eventually the person will go. That is what advanced stage is. Remember the person has suffered enough and may not be suffering now, even if it seems like that to you. Have someone who is with you. That is very important.

Dr. Soumya Hegde, thank you so much for this extensive discussion on so many topics around late-stage dementia care at home. We are sure many family caregivers will benefit from this.

Dr. Soumya Hegde practices in Bangalore as a Consultant Geriatric Psychiatrist. Her detailed profile and information on where she practices can be seen at this link to her Practo profile. Opens in new window She can also be contacted at soumyahegde512@gmail.com.

This interview is part 6 of our 6-part interview series on late stage care. Other interviews in this are: Part 1: Prepare for home care, Part 2: Getting medical advice and preparing for decline, Part 3: Bruising, skin care, exercise, massage, bedsores, Part 4: Constipation, Catheter use, Dental Care, Improving the Quality of Life, and Part 5: Eating/ swallowing problems.
We also have a detailed discussion on late stage care at: Late-stage dementia care.

Note: In this interview series, Dr. Hegde shares information and her suggestions on several topics of late-stage dementia care, for the general convenience of family caregivers. Each family’s care situation is different, and readers will need to see what is helpful for them, and also look at information from other sources. For medical advice for your situation, consult your doctor.

[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.

Home care for late stage dementia, Part 5: Eating/ swallowing problems

Persons in late-stage dementia are almost totally dependent, confined to a wheel chair or a bed, and have serious memory problems and physical complications. In India, care for persons in this stage is usually done by family caregivers, and can be very challenging.

Dr. Soumya Hegde is a Bangalore-based Consultant Geriatric Psychiatrist. She has extensive experience in supporting people with dementia and their families through all stages — for persons living in full-time facilities as well as for persons being cared for at home by their families. Dr. Hegde completed her training in Geriatric Psychiatry in the UK. Her work experience includes seven years as Associate Director of the highly reputed full-time facility, Nightingales Centre for Ageing and Alzheimer’s (Bangalore). In this series of posts, Dr. Hegde discusses various aspects of home care for advanced dementia, and provides useful information and several practical suggestions.[note]

In this part we start looking at a very common area of concern: when someone with dementia starts having eating/ swallowing problems.

Questions/ Comments by Dementia Care Notes: One very common and extremely worrying situation in late-stage dementia is when the person reduces or stops eating and drinking. Can you share why eating problems happen?

Dr. Soumya Hegde (Consultant Geriatric Psychiatrist): There are many reasons why eating problems happen. The first thing to do in such cases is to distinguish between whether she doesn’t want to eat or whether she can’t eat/ swallow. These are very different.

If the person doesn’t want to eat, we need to understand why. The eating will improve once we resolve that problem. But if the person can’t swallow because the dementia has deteriorated, we have to do different things.

DCN: Why would someone not want to eat?

Dr. Hegde: Illness and pain is one set of possible reasons. The person may have viral fever or some physical discomfort and so they don’t feel like eating. The person may have pain — ear pain, tooth pain, stomach pain. Or a sore throat which makes eating hurtful.

The problem could also gastritis caused by some medication, a side-effect sometimes seen with some common medicines. A person with a bloated stomach doesn’t want to eat, but may not tell you what the problem is. The medicines may need to be changed or discontinued.

Or the person may have gone into a behaviour pattern that she can’t break out of. Or she may be so confused or lethargic because of dehydration that she refuses to eat. The reason could even be as simple as the food not being tasty.

DCN: That’s a lot of possible reasons. But first, how can we know if a person doesn’t want to eat or if she can’t eat?

Dr. Hegde: Look for facial expressions of pain or discomfort, or whether it seems a stubborn refusal.

A throat infection may also prevent someone from swallowing. You may not be able to examine for throat inflammation, and the person’s voice may not be sore, but they find it easier in these case to sip fluids. If accompanied by a cold the person may have a runny nose If you find the problem, you can try to solve it.

See how suddenly the problem happened. If it happens suddenly it is very unlikely that the dementia has deteriorated to that point. It can’t be that yesterday he ate rice and sambhar, chewing and swallowing properly, and today the dementia is so bad that he doesn’t eat.

One situation where the eating problem can happen in a relatively short term is in case of a vascular event.

DCN: By vascular event you mean something that interrupted the blood flow in the brain and caused damage, right? How can we know if a relatively sudden eating problem is due to a vascular event?

Dr. Hegde: A vascular event affects blood flow to the brain — a stroke, a mini-stroke. The damage due to it could affect any part of the body. Maybe in this person’s case it affects swallowing.

If the person eats some food and not others, it cannot be due to a vascular event.

Look for whether the refusal behaviour is present in other activities also, like refusing a bath, refusing to walk, refusing to talk—that could mean it is psychological. Offer different food choices. A lot of people who suddenly stop eating may still eat their favourite food, like say a peda. If the person eats some food and not others, it cannot be due to a vascular event.

Check if some other cognitive decline happened around the same time as the eating problem—like a deterioration in comprehension or communication. That could indicate that the eating problem is because of a vascular event, and not a refusal to cooperate. Be especially alert about vascular events if the person has related risk factors like hypertension or diabetes.

DCN: So, families can look at all these aspects, gather data, and tell the doctor what they have observed.

Dr. Hegde: Correct. The doctor will try to understand if the eating problem is because of brain changes (organic causes) or if there is a behavioural component (which means it is psychological) or something else.

…when you notice a swallowing problem, then whilst you are trying to figure out where the problem is, consider switching to mashed food consistency.

One thing is that when you notice a swallowing problem, then whilst you are trying to figure out where the problem is, consider switching to mashed food consistency. This is because liquids are dangerous to give case of genuine swallowing difficulties. So, play safe till you understand the situation better.

DCN: Regarding food taste: we often suggest that caregivers taste the food they give the person to make sure it is tasty, especially because foods taste different when liquidized. Also, don’t tastes change with age? Like they prefer more sweet things when older?

Dr. Hegde: Some foods are not palatable when mashed. You can’t mash an aloo parantha. But you could mash a rasgulla. If you are giving mashed consistency, select foods that taste good after mashing. And yes, the taste for sweet things is the last to go. Use it to your advantage. Add a little bit of sugar to food.

I remember one case of a diabetic resident who didn’t want to eat and so she was given a bit of ice-cream at the tip of the spoon, so that her first taste was sweet. She would open her mouth for it. She didn’t really appreciate the taste of the rest of the food, but she would continue eating.

When the person has eating problems, you won’t be able to give large portions of food. Try to increase the caloric value of your portions.

When the person has eating problems, you won’t be able to give large portions of food. Try to increase the caloric value of your portions. Like making dishes using condensed milk. Or roast and powder dry fruits (almonds, cashews, etc.) and sprinkle a bit of that powder on the food.

DCN: You mentioned dehydration as one of the reasons for refusing to eat. How can we notice and correct dehydration?

Dr. Hegde: Slowly growing dehydration is often missed. Families may think the person is having a litre of water but it may be much less. Correct that problem and things improve. IV fluids may be needed if the dehydration is severe. I have seen persons perk up after they are given enough fluid, and they start swallowing again on their own.

Slowly growing dehydration is often missed.

A dehydrated person looks dull. She wants to lie in bed most of the time, her skin looks very dull, eyes are sunken inside, the mouth is dry. Open the mouth to check the moistness in the tongue and in the oral cavity—dehydrated persons don’t have enough saliva. Or maybe you will see dry marks around the lips. The urine may start smelling. It may be strong and darker. There may be less urine. If the person is on diapers, the diaper may not get as wet, or you may need fewer diapers.

Making the person take enough water may be difficult. Some persons refuse plain water. Try mixing squash, or give nimbu pani (with salt and sugar) or thin buttermilk, whatever appeals to them.

Some persons keep refusing liquids of any sort. It is a big struggle to make them take even 100ml, and getting them to half a litre or more a day is almost unmanageable.

Your doctor may want the person tested for sodium levels to suggest what you can give as fluid. But often, mild problems may not show up in test results, though the person looks dull.

DCN: So, if the person looks dull, we shouldn’t assume it is because of decline in dementia.

Dr. Hegde: Yes, look for various possible causes for any decline. Dehydration is one, but there can be many others. Don’t assume any decline you see is caused by dementia. One more thing, continuing with issues around dehydration–maybe the person will complain of pain while passing urine. The doctor may advise testing for urinary tract infection, and also do other tests.

…look for various possible causes for any decline. Dehydration is one, but there can be many others. Don’t assume any decline you see is caused by dementia.

DCN: Some worried families get desperate when a person doesn’t eat. They try to force down the food.

Dr. Hegde: Yes, it is very worrying when you see the person hardly eating and you might be tempted to force them. But each time you try and force a person with dementia to do something it actually makes the resistance worse and make the task more difficult to complete.

Don’t panic if a few meals are missed. Look for reasons, try to solve them, observe things, and talk to the doctor to see how to proceed.

DCN: You said that “won’t eat” can also happen because of some psychological problem, some behaviour pattern. What is done in such cases?

Dr. Hegde: Usually, in behaviour problem situations, resisting food is not the only behaviour change. They may not cooperate in other ways too, and show behaviors like resistance to diaper change, resistance to get up, and other such things.

Once we establish the cause of these behaviours we can start to solve the problem. If they refuse to eat, and you’ve given the IV fluids (in cases of dehydration), made sure there are no aches and pains, ruled out everything, and it’s more than four or five days, then the doctor will probably consider medication.

A Ryles tube (nasal feeding tube) may be needed for some days to ensure nutrition as medication will take some time to take effect. We feed through the tube as well as directly (normal eating with the mouth). Once the problem is resolved and the person is eating enough through the mouth, we remove the Ryles tube. The medication may take a few days to start working and one will have to be patient.

Note that tube feeding may also be needed to give the person enough nutrition if the person is very ill physically, say, the person has pneumonia.

DCN: Can you give some more examples of what may work for a “won’t eat” case?

Dr. Hegde: Sometimes you have to try things.

In one interesting case, we had an extremely thin lady who hadn’t eaten properly for two years from before she came to live at the residential facility I was working in. We made her sit with others when they were eating. She watched them. And we just left her. And she began eating. At home she had been fed in a separate place by the paid caregiver. Here, once she got company, she started eating again.

DCN: That’s quite a few things we can try for the “won’t eat” situations.

Now about the “can’t eat” situation, where there is a genuine swallowing problem due to the growing dementia. You said it will happen slowly.

Dr. Hegde: Yes, chewing starts taking longer. It takes much longer for the person to eat the same amount of food. She doesn’t seem to understand what to do with the food in the mouth. Some just grit their teeth and don’t open their mouth. They’ve forgotten what to do. You put the food before them, you try to coax them. Or take the hand if they can’t use a spoon. They might cough while swallowing liquids. Mashed, semi-solid food will have to be started.

And then you reach a stage where the person is on mashed food and now cannot swallow even that. You may need to think about feeding tubes.

DCN: What can we try if someone seems to have forgotten how to use a spoon or how to open the mouth and eat?

Dr. Hegde: One thing to try is hand-feeding. It’s not easy because the person may bite your hand. So maybe avoid hand-feeding rice and give a rolled up chappati so that you have some space between your hand and the person’s teeth. I’ve seen cases where a rolled chappati was placed in the person’s hand and her hand was moved up, and she just took over and fed herself.

Try smaller meals. Meals that take too long exhaust you and also exhaust the person.

Try smaller meals. Meals that take too long exhaust you and also exhaust the person. Give, say, one katori (small bowl) at a time, around four or five spoons. It may take fifteen to twenty minutes. Then after one or two hours give another small meal.

To help them remember to swallow, lift the chin, put the spoon of mashed food in, and then tip the head down to let them swallow. It’s an instinct. Stroking the throat can also help. Both these methods work well. Or try swallowing prominently in front of them and they may mimic you.

See what works for you. Some people touch the spoon to the lower lip and tap lightly to make the person open the mouth. Or they say “aaa…” and the person mimics and opens the mouth. Or they lightly massage the joint between the upper end of the jaw and the ear, the temporomandibular joint (TMJ).

These techniques work best when the person is starting to go into swallowing difficulties, and is pocketing the food and doesn’t know what to do with the food afterwards.

DCN: Can we check to know if the person really has swallowing problems?

Dr. Hegde: Usually a swallowing problem due to dementia deterioration starts with difficulty in swallowing liquids. They cough if given water, but may not cough when given food. That is when we switch to mashed or semi-solid food.

Usually a swallowing problem due to dementia deterioration starts with difficulty in swallowing liquids.

If possible, get a “swallowing assessment” done by an ENT or a speech pathologist who specializes in swallowing difficulties. The specialist will do tests and examinations and confirm whether there is an actual swallowing problem. They will recommend a suitable food consistency.

DCN: Tell us more about liquids and food consistency, and pocketing.

Dr. Hegde: When swallowing problems start, avoid giving liquids.

One concern at this point is how to ensure of enough fluid intake. You can give liquids between semi-solids, like one teaspoon of liquid after every two spoons of semi-solid food. A suitable consistency can be created using thickeners (these are not available easily in India). Or use some other way to get the desired food consistency.

Do not give more food if the person still has food in the mouth. If the mouth is full, and the person is not gulping down the food, put in a very small amount of water, very carefully. Sometimes that helps them swallow.

Pocketing is when someone keeps food in the mouth and forgets to gulp it down, so it stays there, in the mouth. If food is gooey, it’s less likely to be pocketed. Like a thick curd consistency—you just can’t pocket something like thick curd.

When a person has swallowing problems or pocketing problems, switch out of solid foods. Use consistencies that are difficult to pocket and easier to swallow.

DCN: Once you’ve done all this, and the person is still not swallowing, the person is no longer getting enough food. That is when tube feeding may be considered, correct?

Dr. Hegde: Yes. But as I said before, tube feeding may be required even in other cases, like when the person hasn’t been getting enough nutrition because of illness, or temporarily when medication has been initiated.

Tube feeding for the “can’t eat” is a decision that needs careful consideration and an understanding of the pros and cons.

DCN: Thank you, Dr. Soumya Hegde, for this discussion on understanding and handling situations where the person can’t or won’t eat food.

We will continue on a related aspect: tube-feeding in the next part, the concluding part of this interview series.

Dr. Soumya Hegde practices in Bangalore as a Consultant Geriatric Psychiatrist. Her detailed profile and information on where she practices can be seen at this link to her Practo profile. Opens in new window She can also be contacted at soumyahegde512@gmail.com.

This interview is part 5 of our 6-part interview series on late stage care. Other interviews in this are: Part 1: Prepare for home care, Part 2: Getting medical advice and preparing for decline, Part 3: Bruising, skin care, exercise, massage, bedsores, Part 4: Constipation, Catheter use, Dental Care, Improving the Quality of Life, and Part 6: Tube feeding and related decisions. We also have a detailed discussion on late stage care at: Late-stage dementia care.

Note: In this interview series, Dr. Hegde shares information and her suggestions on several topics of late-stage dementia care, for the general convenience of family caregivers. Each family’s care situation is different, and readers will need to see what is helpful for them, and also look at information from other sources. For medical advice for your situation, consult your doctor.

[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.

Home care for late stage dementia, Part 4: Constipation, Catheter use, Dental Care, Improving the Quality of Life

Persons in late-stage dementia are almost totally dependent, confined to a wheel chair or a bed, and have serious memory problems and physical complications. In India, care for persons in this stage is usually done by family caregivers, and can be very challenging.

Dr. Soumya Hegde is a Bangalore-based Consultant Geriatric Psychiatrist. She has extensive experience in supporting people with dementia and their families through all stages — for persons living in full-time facilities as well as for persons being cared for at home by their families. Dr. Hegde completed her training in Geriatric Psychiatry in the UK. Her work experience includes seven years as Associate Director of the highly reputed full-time facility, Nightingales Centre for Ageing and Alzheimer’s (Bangalore). In this series of posts, Dr. Hegde discusses various aspects of home care for advanced dementia, and provides useful information and several practical suggestions.[note]

We continue in this part with more special care topics, and discuss constipation, use of catheters, dental care, and improving the person’s quality of life.

Questions/ Comments by Dementia Care Notes: Another issue that may not get noticed is constipation. Someone with dementia may not tell us she is constipated. How do we detect it, and what can we do about it?

Dr. Soumya Hegde (Consultant Geriatric Psychiatrist): Most people have their own frequency of bowel movements. Keep track of the person’s bowel movements to know if they are delayed from their normal cycle. See whether they have been drinking the same amount of fluid, having the same amount of food. Simple remedies may work if done as soon as there is a delay in bowel movements—like giving them warm water (if they can drink safely), increasing the fluid intake slightly, and so on.

Check for bloating—see if there is hardness near and below the belly button. They might pass a lot of gas, but not be able to open their bowels. You can do a PR (per rectum); this is an examination through the rectum, a procedure a nurse can train you on. This will let you check if they have hard stools that they have not been able to evacuate.

Their appetite may come down. They may find no taste in the food. This is a cycle—if they don’t eat enough, there is constipation, and if there is constipation, they don’t want to eat. Act before you get caught in this loop.

An enema can help. A phosphate enema is usually safe, but ask your doctor to prescribe what is suitable. Also ask about mild laxatives you can use.

Families handle constipation differently. Some like to give medicines and wait, and repeat the medicine if there is no motion. The problem is that in the case of medicines, it is difficult to say when the motion will happen, so sometimes you give the medicine, there is no motion, and you give it again, and now the person has a lot of motion because you gave two doses instead of one. An enema is simpler that way because it is immediate. Your choice depends on what you and your doctor are comfortable with.

It is good to have a pattern so that things do not reach a crisis state. For some persons it may be enough to keep a watch and to act in the early stages of constipation. But some persons are habitually constipated. For such persons, you may need a timetable to ensure you keep giving enough laxatives or enemas as suitable, and in time. Families often establish their own pattern of dosages and days.

…a lot of caregiving is about understanding patterns and setting routines for what to do for everything (not just constipation). It reduces the chances of problems and makes care easier.

In fact, a lot of caregiving is about understanding patterns and setting routines for what to do for everything (not just constipation). It reduces the chances of problems and makes care easier.

DCN: We’ve heard of some cases where the family was advised to use a urinary catheter to save diaper costs. But a catheter use has its own problems and is recommended only for some specific cases, not as a cost-saving method. Could you explain what a catheter is, and tell us what we should know about using one?

Dr. Hegde: A urinary catheter is a tube inserted into the bladder via the urethra—it allows the urine to drain out into an attached urine bag. The catheter has to be inserted by a trained nurse, and to be replaced at a frequency the doctor advises.

A catheter can cause problems. It is a foreign object introduced into the body and can be a source of infection.

A catheter can cause problems. It is a foreign object introduced into the body and can be a source of infection. People on a catheter have a higher chance of urinary tract infection (UTI) because of this. Using catheters properly needs alertness and care. A catheter can hinder a person who is still walking around. When the person sits or lies down, the urine bag should be at a lower level so that the urine does not flow back. The person may also keep pulling on the catheter.

A diaper is practically safe in all these respects. But it is costly.

A catheter may be required in some situations. Catheters are required when there is retention of urine because the person is not able to pass urine. There could be a problem with the passage itself. This is more common in men because of enlarged prostates.

There are other situations, too, when a catheter is considered. Suppose a person has a bedsore in the diaper area and this keeps getting wet and does not heal. If you use a catheter you can keep the area exposed and dry so that bedsores heal faster. You can turn the person on one side, and let that bedsore area get air and heal. The catheter can be removed once the sore has healed.

I also use catheterization for a few days in case I need to monitor the output, like when the person is on IV fluids and I want to know the amount of urine—a catheter and urine bag lets me measure it correctly.

…a catheter is not a convenient and cheap substitute for a diaper. It should be used only when appropriate.

But a catheter is not a convenient and cheap substitute for a diaper. It should be used only when appropriate.

DCN: One problem some families report is that the room with the person always smells of “illness.”

Dr. Hegde: That is usually because of the clothes and the stench of urine. Sometimes caregivers tell us that whatever they do, the person’s skin smells of urine. But why is the urine smelling so strong? Maybe the person is dehydrated or has a urinary tract infection. Solve that problem.

Poorly secured diaper disposal bags can be another problem. If you’ve securely tied the soiled diaper into a disposal bag and put that inside another big bin, there will be no smell.

Some people try to handle this problem by spraying room fresheners. But instead of that, find the source and reason of the smell. Maybe you should hydrate the person more, change the diapers more often. Check the clothes, keep the area open. Ensure ventilation.

DCN: Another challenge families report is problems of getting the person’s teeth cleaned. Other dental problems faced include plaque, cavities, loose teeth, and ill-fitting dentures/ lost dentures. How can these be handled at home for someone with advanced dementia?

Dr. Hegde: Maintaining dental hygiene is very important. If the person can no longer spit when you try to brush their teeth, try using diluted mouthwash to clean the teeth. Dip a cloth in it and wipe everything very well. Be careful; don’t pour it into their mouth!

Every few days, maybe once a week, try to do better cleaning. Wait for a time when the person is cooperative and use the help of other family members to do this.

Some agencies provide home nurses for the oral care procedure. They come with the equipment they need and do it.

Some agencies provide home nurses for the oral care procedure. They come with the equipment they need and do it. You can use this service periodically.

Another way is to take them to a dentist once every three months or so for a proper cleaning. Talk to your doctor about what to use for sedation if required to help the patient cooperate for the procedure. Arranging such a trip is difficult but possible.

If the person has a cavity (caries) or a loose tooth, you may need to take the person to a hospital. They will admit the person, use general or local anaesthesia, do the procedure, and send them back. Try to get as much dental work done in one trip as you can. A loose tooth is very risky, particularly if the person swallows it.

DCN: What about dentures?

Dr. Hegde: There are many problems in using dentures. They can be ill-fitting and cause mouth ulcers. Some persons refuse to take the denture out and clean it.

Also, a denture fitting requires the cooperation and understanding of the person; this is a problem for someone with dementia. And gums may recede so much that dentures don’t stay in place.

Before wondering how to get a proper denture made, think, does the person really need a denture? I wouldn’t suggest a denture for late-stage dementia.

Before wondering how to get a proper denture made, think, does the person really need a denture? I wouldn’t suggest a denture for late-stage dementia. In any case in the late stage, when persons are on semi-solid food, dentures are not needed.

DCN: Another problem some caregivers report is that sometimes the person sleeps all day and is restless and awake at night and may even keep groaning. This is worrying and disturbing for family members.

Dr. Hegde: Try to keep the person awake during most of the day. Night time can be frightening for the person. Lights are out, there is no activity, no noise. Everything is hush hush. They are scared; they do not feel secure enough. If they are kept alert and engaged during the day, the body gets tired and they sleep off at night.

DCN: Overall, what can we do to improve the quality of life of a bed-ridden late-stage dementia person?

Dr. Hegde: A lot depends on what is still possible for them.

Think of the types of stimulation possible a bedridden person—more of the tactile, auditory, olfactory things and maybe not so much of cognitive stimulation, puzzles and all.

For sound, for example, maybe have a tape recorder to play their favourite music. If they are not into music, then maybe play a recorded conversation between you and them. Or put wind chimes.

Tactile stimulation, like a head massage or a body massage, can be very relaxing for the person.

If they are still opening their eyes and looking around, maybe put a clock on the wall. And pictures. Look for what is practical for you. You can add a fragrance, if that seems to make a difference.

Try to keep the person engaged through the day.

Try to keep the person engaged through the day. If possible, transfer them to a wheelchair from the bed and take them around. That transferring may be difficult at home. But at least try to keep them sitting up for some time unless there is a medical problem in keeping them upright. Keep them propped up for most of the morning, and then let them lie down in the afternoon, and again prop them up in the evening. This way you can connect with them more, you can go in their room and talk to them. They can see what is happening around them.

How you set up the room can make a difference. In fact, there is an entire field of study called nidotherapy about how changes in the environment can bring about changes in the person.

DCN: Thank you, Dr. Soumya Hegde, for this discussion on constipation, use of catheters, dental care, and improving the person’s quality of life, etc.

For the final two parts, we will look at aspects related to a major problem most families face: when the person with dementia does not eat enough food and has swallowing problems.

Dr. Soumya Hegde practices in Bangalore as a Consultant Geriatric Psychiatrist. Her detailed profile and information on where she practices can be seen at this link to her Practo profile. Opens in new window She can also be contacted at soumyahegde512@gmail.com.

This interview is part 4 of our 6-part interview series on late stage care. Other interviews in this are: Part 1: Prepare for home care, Part 2: Getting medical advice and preparing for decline, Part 3: Bruising, skin care, exercise, massage, bedsores, Part 5: Eating/ swallowing problems, and Part 6: Tube feeding and related decisions.
We also have a detailed discussion on late stage care at: Late-stage dementia care.

Note: In this interview series, Dr. Hegde shares information and her suggestions on several topics of late-stage dementia care, for the general convenience of family caregivers. Each family’s care situation is different, and readers will need to see what is helpful for them, and also look at information from other sources. For medical advice for your situation, consult your doctor.

[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.

Home care for late stage dementia, Part 3: Bruising, skin care, exercise, massage, bedsores

Persons in late-stage dementia are almost totally dependent, confined to a wheel chair or a bed, and have serious memory problems and physical complications. In India, care for persons in this stage is usually done by family caregivers, and can be very challenging.

Dr. Soumya Hegde is a Bangalore-based Consultant Geriatric Psychiatrist. She has extensive experience in supporting people with dementia and their families through all stages — for persons living in full-time facilities as well as for persons being cared for at home by their families. Dr. Hegde completed her training in Geriatric Psychiatry in the UK. Her work experience includes seven years as Associate Director of the highly reputed full-time facility, Nightingales Centre for Ageing and Alzheimer’s (Bangalore). In this series of posts, Dr. Hegde discusses various aspects of home care for advanced dementia, and provides useful information and several practical suggestions.[note]

In this and the remaining parts of this interview series, we discuss specific care topics. Below, we discuss bruising, skin care and circulation, exercise, massage, and bedsores.

Questions/ Comments by Dementia Care Notes: Most persons in late-stage dementia are bedridden and dependent. How does bed-ridden care for someone with dementia differ from bed-ridden care for other persons?

Dr. Soumya Hegde (Consultant Geriatric Psychiatrist): A major difference is the level of understanding and cooperation shown by a non-dementia person compared to what someone with dementia shows. A normal person may understand what we are doing and why, and help by cooperating, or at least they may not push us away. But someone with dementia may not understand, which makes the tasks more difficult.

Some additional issues are more common in dementia persons, like contractures and swallowing problems. Also, they may have muscle atrophy and general deterioration. They usually need more passive physiotherapy.

Persons with dementia are often unable to tell us about their problems like pain or indigestion and so on. We have to be more observant and careful as caregivers.

DCN: You mentioned earlier families can use their day’s routine to identify what to learn for caregiving. Typical skills are obvious, and relate to basic care—bathing, shampooing, cleaning, feeding, position change, transferring them from bed to a chair and back, and so on. But we may miss some other important aspects because they are not part of such essential care work.

For example, consider skin-related problems. Older persons have very delicate skins, and keep getting bruises. How do we handle this?

Dr. Hegde: As people age, their skin becomes very fragile. Their capillary walls are more fragile and they are more susceptible to breakage. The protective layer of fat beneath the skin has also reduced so people get injured easily. You see the bruises all the time. You worry, I bruised them, did I hold so tight? But actually, you haven’t held them tight—they just bruise easily. You can try and apply less pressure while holding them but they may still bruise.

An ice pack can help the bruise resolve faster, but healing will still take time. Four to five days is reasonable in an old person. The bruise will move through stages, starting with a pinkish red, then becoming darker, blue-black sort. It keeps changing till finally it is a faint yellow colour. Families get worried they did something wrong when they see a dark blue bruise but what they are seeing is not the first stage of the bruise—the injury has happened earlier. Give the bruise time to heal.

DCN: When is a bruise cause for worry?

Dr. Hegde: If the bruise is on loose skin, loose flesh, I would not get worried.

Usually it is not the bruise that is a cause for worry, but a muscle or bone injury under the bruise. There could be a fracture. Or something that needs anti-inflammatory medication. Look for the presence of significant pain. If I touch a bruise and the person screams, it means there is significant pain. The bruise is tender. There could be swelling.

Usually it is not the bruise that is a cause for worry, but a muscle or bone injury under the bruise. There could be a fracture. Or something that needs anti-inflammatory medication.

In such cases, there may be pain when you touch anywhere on the limb, not just on the bruise. A bruise at the knee may be seen when the caregiver tried to separate the knees to change a diaper, but maybe the femur was fractured, and when you touch anywhere on the leg it hurts. Many late-stage persons have significant osteoporosis. Even a slight amount of pressure can cause a fracture.

In case of pain and tenderness, get a doctor to check what is wrong. Even if nothing is broken, the person may need an anti-inflammatory medicine for a few days. If you can’t get a doctor, ask a nurse for an initial assessment. Or can go to a doctor with a photograph of the bruise, maybe with an x-ray done using a portable x-ray service. Or take a video of what happens when you touch or move the person. The doctor will advise.

DCN: How can we keep their skin healthy?

Dr. Hegde: One is maintaining circulation. Second is, don’t use very hot water—use only lukewarm water. Hot water may do more harm to the skin, while lukewarm water retains the skin’s moisture and prevents the skin from drying. Try to keep the skin soft and moist. If it’s dry, it gets cuts.

Don’t wipe off all the moisture after a bath. Just dab and dry.

Don’t wipe off all the moisture after a bath. Just dab and dry. You can use flannel or a folded thin towel to dab the skin. Apply moisturising lotion after the bath when the skin is still slightly moist. Avoid talcum powder; it dries the skin.

DCN: Sometimes people get scratches because of their nails, or seem to have an itch they keep scratching.

Dr. Hegde: Try to prevent scratching by cutting and filing the nails, so that the nails don’t have sharp edges. Or soak the nails in warm water and file them frequently. Nail care and foot care twice a week also helps.

You also need to prevent scratches getting infected. Apply some mild antiseptic cream if needed. If the person keeps scratching the same place again and again, you can bandage it. That will let that place heal, though they may scratch somewhere else. If scratching persists, consider using a sock to cover their fingers. I find that when this is done for some time, the scratching behaviour is forgotten.

A lot of such behaviours are habitual. They do something, they get some sensation they enjoy, and so they keep doing it. If you manage to make them stop for some time, you can break the behaviour pattern. Think of ways to distract the person so they don’t scratch. Maybe they are scratching because of they have a really dry skin, and it itches. Use skin care techniques to improve the dry skin. Ask a dermatologist about special products that can help.

Some soaps and shampoos are very harsh; look for milder products like hypoallergic products.

An allergy is another possible reason. Some soaps and shampoos are very harsh; look for milder products like hypoallergic products. They’re expensive but they may help you get past that stage when the skin is really dry.

You may need to supplement various skin tips with an anti-allergy tablet for a few days. Once the scratching habit subsides, you may be able to stop the tablets and just continue with the dry skin tips.

Some foods may also cause allergy. In these cases its best to consult someone who treats allergies or even consider alternate treatment options like Ayurveda.

See what helps in your case.

DCN: We often hear that doing massage and passive exercise are an important part of caregiving. Could you explain why these are considered important, and how we can do them?

Dr. Hegde: A massage relaxes the person considerably. It improves blood circulation. It is also a form of tactile stimulation, and adds to the quality of life of the person.

Massage has to be done carefully. Don’t massage too hard; don’t think, I’ll give a proper massage and the person will feel better. Don’t yank or pull. There is a pressure level that is appropriate and a pressure level that can harm. Ask a physiotherapist to show you the correct amount of pressure, and what can be safely done. Or get a vibrating massager so that you control the pressure you’re applying. Use a bit of oil and let the machine do the work.

You can massage all over the body. Focus on the back if the person spends long periods in bed or sitting.

We use passive exercise to try to retain the person’s range of motion as much as we can. A physiotherapist can show you what to do.

Passive exercise is also very important. We use passive exercise to try to retain the person’s range of motion as much as we can. A physiotherapist can show you what to do.

If possible, do massage and passive exercise daily, maybe even twice a day. Don’t be rough, don’t apply too much force, and watch out for pain. If you have any doubt, opt for milder pressure. Also, if contractures have already set in, you have to be very careful.

DCN: What are contractures?

Dr. Hegde: A contracture can be described as a stiffness of a joint, a stiffness that maintains the joint at a particular angle, such that the joint is difficult to bend or extend beyond that. The person holds the joint in that position. For example, a wrist flexion, where the hand gets bent at an angle and does not straighten out. If you try to straighten it out the person winces and you realize you are doing something wrong.

In a lot of late-stage persons, you see wrist flexion. Another common contracture is the ankle extension, where the ankle is outward and extended. Yet another common contracture is when legs remain bent at the knee and don’t straighten out.

DCN: Sometimes a family caregiver is handling all this work alone. What level of massage and passive exercise should she aim for if her time and energy are less?

Dr. Hegde: That’s difficult to say. Keep in mind the purpose of these, and why they are important. Try for two sessions each day, or one, or maybe combine the massage and passive exercise sessions or do them on alternate days. You will have to see what you can handle.

DCN: Please tell us about what bedsores are and how to reduce the chances of bedsores.

Dr. Hegde: A bedsore is basically the breakdown of the skin. This could happen because of lack of moisture or lack of circulation to that area.

Bedsores are more likely in some parts of the body, which we call “pressure areas.” Like areas where bones are prominent and close to the surface, or other body parts that are under continual pressure because something keeps pressing on them.

Try to make sure no part of the body is in contact with a hard surface for very long, and that there is no breakage in the area. Watch out for a slight redness in an area of the skin, which is how a bedsore begins.

Try to make sure no part of the body is in contact with a hard surface for very long, and that there is no breakage in the area. Watch out for a slight redness in an area of the skin, which is how a bedsore begins. You get a variety of inflatable rings for lifting off one part of the body from the bed. You can also use other objects, like a glove with water, or some type of air bubble, or a water bottle, whatever can reduce the contact between that part of the body with the bed or chair. And keep changing the position of the water bottle or whatever you are using.

Make sure the bed-ridden person changes sides every two or three hours. Some persons turn themselves. But others cannot turn or don’t want to turn, so you have to turn them every two to three hours, even at night. Consider an air mattress for persons who no longer turn on their own. Ask a physiotherapist to check the current state of the person, and advise you on bedsore prevention.

The lower back area is most prone to bedsores. One tip is that each time you change the diaper, before you turn the person on the back, massage the lower back lightly for circulation. One problem is that sores start forming in the lower back or buttock area, and when people pass motions, it touches these sores. This is especially seen for persons who keep passing small amounts of motion all day. Try to use padding to avoid this problem.

DCN: How are bedsores treated?

Dr. Hegde: The faster you notice sores, the faster you can to do something about them.

The first stage is slight redness, and you need to notice it right away to stop it from getting worse. Reduce contact and pressure on that area. Keep checking the status and get an opinion of a nurse or doctor. Most nurses are trained in bedsore dressings and know what dressing is required. The conventional method is using sprays, betadine dressing, etc.

If the bedsore progresses and bursts and there is a yellowish pus discharge, it means it’s got infected. Then, in addition to a dressing, it may require an antibiotic for the infection.

If the bedsore does not heal for some time with all this, consult wound specialists.

If the bedsore does not heal for some time with all this, consult wound specialists. They will assess the bedsore and the person, and give you special dressings to use. They also advise on other actions possible to speed up healing. For example, they may suggest improving hydration– maybe the person needs to be on IV fluids for some time. Or they may suggest vitamin injections, or more intake of some types of food. Bedsore healing is not just bedsore dressing, it includes things that can promote healing.

DCN: Thank you, Dr. Soumya Hegde, for this discussion on skin care, massage, contractures, bedsores, etc.

We will continue discussing special care topics in Part 4, where we will look at constipation, use of catheters, hygiene, dental care, reducing restlessness, and improving the person’s quality of life.

Dr. Soumya Hegde practices in Bangalore as a Consultant Geriatric Psychiatrist. Her detailed profile and information on where she practices can be seen at this link to her Practo profile. Opens in new window She can also be contacted at soumyahegde512@gmail.com.

This interview is part 3 of our 6-part interview series on late stage care. Other interviews in this are: Part 1: Prepare for home care, Part 2: Getting medical advice and preparing for decline, Part 4: Constipation, Catheter use, Dental Care, Improving the Quality of Life, Part 5: Eating/ swallowing problems, and Part 6: Tube feeding and related decisions.
We also have a detailed discussion on late stage care at: Late-stage dementia care.

Note: In this interview series, Dr. Hegde shares information and her suggestions on several topics of late-stage dementia care, for the general convenience of family caregivers. Each family’s care situation is different, and readers will need to see what is helpful for them, and also look at information from other sources. For medical advice for your situation, consult your doctor.

[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.