If someone shows dementia symptoms, it is best to consult a doctor. Doctors will perform the required checks to understand whether the person has dementia. They will try to find out which diseases could be causing the symptoms.
- Anyone can get dementia.
- Why early diagnosis is important.
- Whom to approach.
- Diagnosis of Dementia .
- Problems in diagnosis (missed diagnosis, wrong diagnosis).
- After the diagnosis.
- Treatment and research.
- Risk factors for dementia and what we can do.
- Genetics (risk if close relatives have dementia).
- See Also…
Dementia can happen to persons of any race, gender, social class, and education status. Therefore everyone needs to be alert about the symptoms of dementia in themselves and in people around them.
Many people think that intelligent and active persons won’t get dementia. People say, “Oh, I solve crosswords. I won’t get dementia.” This is not true. Many persons who got dementia had been leading physically and mentally active lives.
Also note that while dementia is more common among older persons, younger persons and middle-aged persons can also get dementia.
Some examples of prominent international persons who got dementia are: Ronald Reagan, Margaret Thatcher, Iris Murdoch, and Terry Pratchett. Some examples from India are Atal Bihari Vajpayee, Teji Bacchan (Amitabh Bachhan’s mother), and George Fernandes. Some links related to prominent persons with dementia are included in the “See Also” section at the bottom.
Most persons do not notice early dementia symptoms. Or they ignore them. Take memory loss. Most people consider it a part of ageing. They do not tell their doctor about memory problems during normal health checkups. They do not consult a doctor if they have been forgetting things.
Or consider problems like confusion or disorientation. Or even apathy or major personality changes, like becoming abusive. These are not seen as problems that could be related to a disease.
Early diagnosis is useful because some causes of dementia symptoms can be reversed with treatment. Examples of reversible causes include Vitamin B12 deficiency, depression, stress, hormonal problems, and many others. So by taking the medicines, someone with a reversible dementia can get relief from the symptoms.
Early diagnosis is also useful for irreversible dementias. Some treatments are available for some types of dementia. These can reduce the severity of the symptoms in the early stages for some patients.
Initially patients face mild problems like memory loss, confusion, and disorientation. Simple tasks become difficult to do. They may feel different in strange ways. This worries them. They may wonder whether they are stupid or crazy. But they often hide their problems because they are embarrassed or scared. The problems get noticed only after serious mistakes are made, like a person wandering. Or family members see major changes in the person’s personality, and suspect a problem.
There are many symptoms associated with dementia. Only some of these are seen in early stages. But aware persons will notice these and consult doctors and get a diagnosis and maybe even treatment.
People can tell the family doctor about the problems being faced. The doctor will do some initial checking. If needed, the doctor will direct them to a specialist.
Because of poor dementia awareness, many doctors do not know about enough about dementia. Family doctors may think that memory loss is because of age. They may think the changed behavior is a personality problem. They are more likely to miss dementia in younger persons.
Dementia diagnosis is usually done by a specialist. The specialist will perform tests and ask questions to understand the symptoms. This includes talking to the patient and family members. A “differential diagnosis” is done to see which disease is causing the symptoms. The patient may have more than one medical condition.
To consult a specialist, visit the neurology, geriatrics, or psychiatry department of a hospital. Doctors can be consulted at a hostpital’s OPD (out patient department). Or go to specialized clinics like Memory Clinics. Examples of organizations that have memory clinic are ARDSI (Alzheimer’s and Related Disorders Society of India) chapters. NGOs working with seniors may also have such clinics.
Some persons with symptoms may refuse to see a doctor. They can be suspicious. If you force them to see a doctor, they get angry. Talk to the doctor in the absence of the person. Ask the doctor to check the person for dementia as part of a normal health check-up. Sometimes volunteers make home visits to do an assessment. This can be used to decide on further medical follow-up.
A full 4-part interview of Dr CT Sudhir Kumar explaining what a diagnosis requires and suggesting how families can proceed to get a diagnosis is available on this site. See the “See Also” section below for links to all four parts.
A dementia diagnosis is a “clinical” diagnosis given by the doctor (clinician).
Patient history is very important for doing the diagnosis. Doctors gather information from the patient and family on the symptoms and their impact. They check the abilities of the patient to see if these have reduced a lot. They ask questions to know how fast the decline was. The patient’s medical data and current medicines are studied. Families must give the doctor all this information. They have to be ready to answer such questions.
Doctors also make patients perform some tasks. These could include drawing something, answering questions about the news or general knowledge, asking them to remember something, walking on a straight line, etc. Doctors may use a “Mini Mental State Examination” (MMSE) test or a similar test to see the cognitive status of the patient. Local, adapted versions may also be used, such as the Hindi Mental Status Examination (HMSE). Only doctors are supposed to use such tests and interpret the results.
The diagnosis will also involve tests to check for additional medical problems. Examples of some common tests are blood tests for vitamin B12, thyroid hormones, and various deficiencies.
Brain scans may be done. They help doctors see whether the brain has some damage, and which parts of the brain are active and which are not.
Doctors then put together all the data to see if the person has dementia.
While family doctors may do some initial checking, the complete diagnosis is usually done by specialists in neurology, psychiatry, or geriatrics.
If the dementia symptoms are serious, the doctor may say the patient has all-cause dementia. The doctor also tries to see which specific diseases are causing the symptoms. Examples are Alzheimer’s, Lewy Body Dementia, Fronto-temporal dementia (FTD), vascular, etc. Often doctors give only a tentative diagnosis. They use terms like “possible Alzheimer’s” or “probable Alzheimer’s”. The reason is that a firm diagnosis of many dementias can only be given after someone dies and the brain is checked in an autopsy.
If the symptoms are mild, doctors may say the person has Mild Cognitive Impairment (MCI). MCI is not dementia. Some persons with MCI will develop dementia later. Others will stay at that same level, or may even improve. However because MCI sometimes develops into dementia, families have to remain alert about more decline to get another check-up.
Media reports sometimes give wrong information about the diagnosis procedure. Such reports may be based on research and not on approved diagnosis methods. Here are some clarifications:
- Genetic testing is not used for diagnosis.
- Blood tests are not yet used to diagnose Alzheimer’s Disease.
- Alzheimer’s Disease cannot be diagnosed twenty years before the symptoms appear. A diagnosis of pre-clinical Alzheimer’s Disease is not currently an approved way of diagnosing.
Confusion about the diagnosis process is mainly because of a proposed approach. Experts have suggested an approach using a three-stage model for Alzheimer’s Disease. The first stage is pre-clinical AD. Here the brain shows some changes, but the person has no dementia symptoms. The second stage is when there are mild symptoms, called “MCI due to Alzheimer’s Disease.” The third stage is called “dementia caused by Alzheimer’s Disease“. The proposed approach also includes two biomarkers. This proposed approach was first described in 2011, but these are still just “Proposed Criteria and Guidelines”. Biomarkers are not currently used for diagnosis, but are used in research and especially to identify those in MCI or early Alzheimer’s, such as for developing and testing drugs.
Doctors may miss the dementia diagnosis. Or they may give a wrong or incomplete diagnosis. Here are some examples of problems in getting a correct and complete diagnosis:
- Symptoms are seen as being old age or changed character.: This mistake is very common. It happens more when persons are in early-stage dementia and symptoms are mild.
- Dementia is diagnosed as some other problem.: The typical dementia patient is an older person with memory loss. If a person is younger or does not have memory loss, the doctor may think the symptoms are because of some other problem. For example, FTD patients are often considered psychiatric patients. Or middle-aged persons with memory problems are told they are just having too much stress.
- The dementia is called irreversible though the symptoms are because of a reversible problem.: For example, a depressed person may get a dementia diagnosis. Or someone with thyroid problems is diagnosed as having Alzheimer’s Disease. Less known problems, like normal pressure hydrocephalus, can also be missed.
- A diagnosis mentions a wrong irreversible dementia.: There are many irreversible diseases that cause dementia. Doctors may give a wrong diagnosis about which irreversible disease the patient has. One common problem is telling Lewy Body Dementia (LBD) patients they have Alzheimer’s Disease (AD). This mistake is harmful because some AD medicines can harm someone with LBD.
- Other serious medical problems may be missed.: Persons may have more than one medical problems adding to the dementia symptoms. One problem may get diagnosed properly. But others may be missed. For example someone has LBD as well as AD, but gets diagnosed only for AD.
When the diagnosis is incomplete or wrong, the treatment is not proper. Medicine may not be given for a curable disease. Or a wrong medicine may be given, causing harm.
Another thing is that new medical problems may develop after the initial diagnosis. However, the family may not go for additional checkups. Also, doctors may not check whether the patient now also has a new problem. So the new problem remains untreated.
To reduce such problems, families must know about dementia and diagnosis. They must give the full patient history to the doctor. They must be alert during the diagnosis. Sometimes a junior doctor gives a diagnosis without doing the full checkup. Families must ask questions. If they are not satisfied with the diagnosis, they should get a second opinion. Also, families should not think that someone has dementia just because the person has memory loss or other symptoms.
Doctors tell the family the diagnosis, but usually do not have the time to explain things repeatedly and in detail. They may not discuss the non-medical care needed for the patient. They may not tell the families where to get more information and support.
Dementia lasts for many years and requires a lot of support. A few short visits to the doctor are not enough to learn about dementia and care. So patients and their families have to look for more sources and spend more time and effort to learn about dementia.
Better information and counselling lets families plan better for dementia. Patients are able to continue an active and meaningful life for more time. For example, Terry Pratchett, the well-known fantasy writer, was diagnosed in 2007. He remained active till his death in 2015. Another example is Charles Kuen Kao, who was diagnosed in early 2004 and won the Nobel Prize for Physics in 2009.
Those who have just received a diagnosis of dementia may feel overwhelmed and uncertain about what to expect and how to proceed. An extremely useful set of resources for such persons is Dementia Mentors, a website designed to help persons with dementia stay active and connected. The site explains their goal as “To help those who are newly diagnosed and in the early stages of dementia.” and is intended for an international audience. Also, while the site aims at persons diagnosed with dementia, it is also very useful for family caregivers trying to understand and support persons with dementia.
Counselors may be available in hospitals, dementia associations, and support groups. There are online groups for various types of dementia. Getting in touch with others facing similar situations gives a better understanding of what to expect. Also, get information on the type of support available. There are also websites and books on these topics. See the “See Also” section below for some suggestions.
Some conditions that cause dementia can be cured. But most types of dementia are irreversible and progressive. Unfortunately, available medicines can only address symptoms but there are no medicines to cure the underlying disease or even slow it. don’t help much. Media reports that dementia can be cured are misleading. Here is an overview of the current status of medicines.
- Many diseases can create dementia symptoms. Most research is on Alzheimer’s Disease, the commonest form of dementia.
- Currently, there are no disease-modifying medicines approved for use in India, even for Alzheimer’s Disease. A disease-modifying drug is a drug that affect the underlying pathophysiology of the disease. In June 2021, FDA approved (under its Accelerated Approval pathway), one disease-modifying medicine, Aduhelm (aducanumab) from Biogen , a medicine that works on reducing amyloid deposits in the brain and is aimed at MCI/ early AD and requires administration by IV. This medicine is extremely expensive and useful only in early stages of persons whose AD is amyloid-positive, and not everyone is convinced it would result in clinical benefits. This approval pathway requires Biogen to verify clinical benefit in a post-approval trial, results due in 2030. India has not yet approved this drug.
- That is, in India, no approved medicine can change how Alzheimer’s Disease damages the brain. Some medicines can help reduce symptoms like memory loss, and may give a lot of relief to the person for some time, especially in early stages. But these do not work for all patients.
- Media reports often claim that alternate therapies and herbs can cure dementia. These are misleading. Some such therapies can even harm. Popular therapies mentioned are coconut oil, turmeric, cinnamon, etc.. The Alzheimer UK’s page, Science behind the headlines, discusses these therapies. A quote:
…while a study or many studies may show a benefit to a particular behaviour within the lab or in models of dementia, this does not mean that it will necessarily work in people or in the long-term way that we would like.
- Stem cell therapies cannot cure Alzheimer’s Disease. The Indian Govt has cautioned that untested techniques may harm patients. The Alzheimer’s Society, UK, has said in its position paper that no stem cell cure is currently available. The Indian Medical Association considers using bone marrow and cord blood stem cells for anything other than therapy for blood disorders as malpractice.
The focus of treatment currently available is providing symptom relief. Some medicines are available for this and work in some persons for some time, but do not work for others. Also, medicines may be considered for behavior challenges if non-pharmacological methods do not provide adequate relief; however, the recommended approach is to try non-medicine approaches first. Medicines are also used for vascular health, and to address other medical conditions that can affect dementia progression. Related conditions like depression are also treated. However all these treatments focus on the symptoms and on reducing the probability of the dementia getting worse–they do not cure dementia and do not ensure that the dementia will stop progressing.
Regarding medical treatment, it is important to get the doctor to review any prescribed medications and their dosages regularly. Telemedicine may be suitable for follow-up consultations in the current COVID situation (see Getting medical advice using telemedicine) Video recordings can be used to share the way the person is having difficulties or showing changed behaviours. Also ensure you have updated prescriptions/ e-prescriptions.
All medication needs to be given only based on doctor’s advice. Remember that some medicines can cause or increase confusion, and some can even create dementia-like symptoms. Even commonly taken shortcuts like sleeping pills, for example, need to be avoided as they don’t just increase risk of falls, they also increase daytime drowsiness and confusion. Essentially, consult the doctor before changing (adding, changing dosage or removing) any medicine.
See the “See Also” at the bottom for references and further reading on medicines and treatments.
Medical research looks at three broad areas:
- For normal people: how to prevent onset.
- For persons where the dementia disease has started damaging the brain but symptoms are not yet visible: slow the progress of the brain damage. Keep delaying the onset of symptoms. (This stage is called the prodromal stage)
- For persons clinically diagnosed with dementia: treat the symptoms to improve the quality of life. Slow the damage caused in the brain by the disease.
Interested persons can help by funding research. They can take part in drug trials, and in studies on lifestyle impact. Contact dementia associations and major neurology hospitals if you want to help.
There is no definite way for an individual to make sure they will not get dementia. However, we can make some lifestyle choices to reduce our chance of getting dementia.
(see a simple infographic for actions you can start on rightaway to reduce your risk of dementia: Dementia Risk Reduction: Infographic.)
Researchers are trying to understand how various factors affect the brain, and how the brain can be kept healthy. The only clear correlation so far is that the probability of dementia increases with age. In general, dementia risk and prevention research and population studies try to identify “risk factors”, factors that are correlated with dementia. Experts saying that by trying to reduce these, we may reduce our chance of dementia. That is, we can’t avoid dementia but we can reduce our chance of getting it.
Risk factors are broadly classified as non-modifiable risk factors, and modifiable risk factors. Non-modifiable risk factors are factors we cannot change, such as age, family history of dementia, presence of the ApoE4 allele, some specific chromosome mutations, being a female, having Down’s syndrome, etc. So, doctors suggest focusing on the modifiable risk factors, which are risk factors we can try to change by our actions.
In general, a healthy lifestyle is expected to reduce the chance of dementia. One action that can reduce the chance of dementia is taking care of vascular health. A useful mantra to remember is: “What is good for your heart is good for your brain”. Here are some examples of what to do:
- Stop smoking.
- Maintain a healthy weight and eating a healthy diet with lots of vegetables and fruits. Avoid obesity. Ask your doctor about diets like the Mediterranean diet or the DASH diet and whether they are suitable for this. Reduce alcohol consumption.
- Ensure there is no nutritional deficiency (particularly Vitamin B12)
- Have high levels of physical activity.
- Maintain mental fitness by learning new things.
- Reduce risk of heart disease.
- Remain socially active and avoid social isolation.
- Remain alert about problems like diabetes, hypertension, dyslipidemia, vascular disease, etc., and try to avoid getting them or at least keep them under control using medicines and lifestyle changes.
- Remain alert about problems like depression, which is a risk factor.
- A recent report (July 2017) suggests that hearing loss (partial or complete) is an important risk factor.
Also, avoid head injury 🙂 Traumatic brain injuries as well as repeated mild traumatic brain injuries (like seen in some sports) are considered a risk factor for dementia, even if they happen when younger. So consider avoiding games where head injury is common (like football and boxing), staying safe when driving/ travelling (safe driving, avoiding drunk driving, use of helmets, seat belts) and using fall prevention techniques (e.g.better lighting, even walking surfaces, improving balance, especially when older and balance is poorer. )
Note that some medical conditions are closely connected with dementia. It is useful to know about them, as their presence can mean an increased risk/ probability of dementia. Down’s syndrome is one such medical condition. Also, many persons with Parkinson’s Disease develop dementia in later stages—one estimate is that around one-thirds of Parkinson’s Diseases patients will get dementia. Stroke is another such illness—around 20% of the persons who suffer stroke develop dementia within six months of the stroke.
Yet another medical condition related to dementia is depression. While the nature of the relationship between dementia and depression is not fully understood, it is good to be alert about the possibility of dementia in a person who shows depression symptoms.
Also, be alert about medical conditions that can cause dementia symptoms, like hypothyroidism (see sections above).
To reiterate, there is no certain way to avoid getting dementia. Media articles sometimes claim that people can prevent dementia if they do some particular activity or eat some particular food. That is not true. People can reduce their risk of dementia by making some changes in their lives, but they cannot be certain that they will never get dementia. It is also wrong to think that persons who get dementia were leading unhealthy or inactive lives. The World Alzheimer’s Report 2014: Dementia and Risk Reduction says: There is no evidence strong enough at this time to claim that lifestyle changes will prevent dementia on an individual basis. A more recent report (July 2017), The Lancet: Dementia prevention, intervention, and care also suggests lifestyle modifications, but cautions: “The available evidence for the effect of lifestyle changes on cognitive decline is mixed.”
See the “See Also” at the bottom of this page for further reading on risk and protective factors.
People are worried about getting dementia. This is often more so if a close relative, like a sibling or parent, has dementia. They want to know the genetic risk of getting dementia. Genetic rick is an active area for research.
Most diseases happen because of a combination of genetic and environmental factors. This is also true of most forms of dementia.
A child inherits only half the genes of each parent. Even if one parent has a gene that increases the dementia risk, the child may not have inherited that gene. Also, most genes only increase a “predisposition” for a disease. Inheriting a gene increases the chance that the child will get the disease. But it does not mean that the child will definitely get the disease. The chance of getting the disease also depends on other factors like the surroundings, diet and exercise, and random events.
Dementia symptoms can be caused by multiple diseases. The genetic risk of one dementia disease may be very different from the genetic risk of another. According to the current research, the genetic risk of younger onset dementias is different from that of late onset dementia. If your family member has younger onset dementia, you have a higher chance of inheriting it. A few forms of dementia are known to be inherited, like Huntington’s Disease. Here the child with the gene will definitely get the disease, but again, the age at which the child will get it is not known. This is true of only a very few and very rare types of dementia. Talk to your doctor if you are worried.
Most cases of dementia happen only in older persons. Such late onset dementias are said to be caused by several factors. The main risk factor for late onset dementia is age, not genetics.
Concerned relatives can ask their doctors about genetic counselling. Doctors usually do not advise gene testing unless the person’s risk is higher than normal. These tests are not available easily in India.
See the “See Also” at the bottom for further reading on the genetic risk of dementia.
Resources/ references from Dementia Care Notes and related sites
An infographic for things to start right away to reduce the risk of dementia: Dementia Risk Reduction: Infographic.
Read about how to use “active ageing” to reduce your risk of dementia :
- Use “Active Ageing” to age better and reduce dementia risk: part 1
- Use “Active Ageing” to age better and reduce dementia risk: part 2
Read more about the symptoms and diseases:
A four-part interview with Dr CT Sudhir Kumar explaining dementia diagnosis and suggesting how families can prepare for and get a diagnosis is available on this site.
- The dementia diagnosis process, Part 1: Getting started and selecting a doctor.
- The dementia diagnosis process, Part 2: Preparing for the doctor consultation.
- The dementia diagnosis process, Part 3: Meeting the doctor and getting a diagnosis.
- The dementia diagnosis process, Part 4: Understanding the diagnosis and what comes next.
Advanced reading: to know more about current medication and also some commonly talked about alternate therapies for dementia, see:
- For dementia and current medicines, including FDA accelerated pathway approval of a disease-modifying drug, and also discussion on stem cell therapy, see some excerpts and links on the page: Topic Reads: Current medications for dementia
- For a discussion on using medicines for changed behavior, see: Topic Reads: Topic reads: anti-psychotic medicines and dementia
- For discussions on alternate therapies, herbs and foods often mentioned in media for dementia, see a discussion on how to interpret such reports and evaluate alternate therapies: Dementia research.
- Read some excerpts and links on the genetic risks and dementia on the page: Topic reads: genetic risk and dementia.
- For a detailed discussion on risk and protective factor research in dementia, see the advanced reading page: Dementia research.
External Resources/ references
Read more about diagnosis:
- An article on why early diagnosis is important: Dementia: Advantages of Seeking an Early Diagnosis Opens in new window.
- On how dementia is diagnosed: link for Alzheimer’s diagnosis Opens in new window
- Some articles about under-diagnosis/ misdiagnosis:
After the diagnosis:
- Document written for patients diagnosed at early-stage dementia: ADEAR has published a document: What Happens Next? Opens in new window. Topics in this include how to cope with the diagnosis, how to tell family and friends, and what to expect. The document can also be helpful to caregivers.
- A booklet for persons just diagnosed with FTD can be downloaded at: The Doctor Thinks It’s FTD. Now What? Opens in new window.
- The website, Dementia Mentors Opens in new window, is available to help persons who are newly diagnosed and in the early stages of dementia. It can also help the family caregivers understand the situation better. The site includes videos, writings, books, blogs and other resources, and offers mentoring and virtual memory cafes.
For dementia risk factors and possible protective measures:
- Get an overview of risk factors at Alz.org’s page on risk factors Opens in new window and NIA’s page on current understanding of causes of AD Opens in new window.
- Better vascular care can help reduce the chances of vascular dementia. Read: Preventing vascular dementia Opens in new window.
- To know more about head injury and dementia, see: Traumatic Brain Injury Opens in new window.
- See a detailed report by Alzheimer’s Disease International: World Alzheimer’s Report 2014: Dementia and Risk Reduction: An analysis of protective and modifiable factors Opens in new window.
- See a detailed report by the Lancet Commission on Dementia Prevention, Intervention, and Care, published in July 2017: (full report can be viewed using a (free) subscriber account) Dementia prevention, intervention, and care Opens in new window (PDF file) .
- See an evidence-based report on Risk reduction of cognitive decline and dementia, published by World Health Organization (WHO) in May 2019 : The report can be viewed/ downloaded from Risk reduction of cognitive decline and dementia: WHO Guidelines Opens in new window .
Some links to read more about prominent persons with dementia:
- Ronald Reagan’s statement to the nation on his dementia (archived copy) Opens in new window)
- Book by Carol Thatcher on her mother, Margaret Thatcher’s dementia A Swim-on part in a Goldfish Bowl (Amazon link) Opens in new window (This is also available as a Kindle ebook (Amazon link) Opens in new window)
- Information on Sir Terry Pratchett Opens in new window, Nobel Prize winner.
- Page on Charles Kuen Kao Opens in new window, Nobel Prize winner and a person diagnosed with AD
- News articles on George Fernandes’ dementia Opens in new window and Wikipedia page on George Fernandes Opens in new window.
- Wikipedia page of Nani Palkivala suggesting that he may have had Alzheimer’s towards the end: Nanabhoy Palkhivala: Final Days Opens in new window.
- List of some well-known persons with AD can be seen in Category:People with Alzheimer’s disease Opens in new window and Category:Deaths from Alzheimer’s disease Opens in new window.
Reports referred to on this page:
- 2019 Alzheimer’s Disease Facts and Figures report (PDF file can be downloaded) Opens in new window
- World Alzheimer’s Report 2014: Dementia and Risk Reduction: An analysis of protective and modifiable factors Opens in new window