Dementia Diagnosis, Treatment, Prevention

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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.

Sections on this page:

For discussion on dementia symptoms, see: What is dementia. To know more about diseases that cause dementia, see: Diseases that cause dementia.

Anyone can get dementia.

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, Terry Pratchett, Rosalynn Carter, Bruce Willis and Robin Williams. Some examples from India are Atal Bihari Vajpayee, Teji Bacchan (Amitabh Bachhan’s mother), George Fernandes , Nanabhoy Palkhivala, industrialist Srichand Parmanand Hinduja, actor Seema Deo. Some links related to prominent persons with dementia are included in the “See Also” section at the bottom.

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Why early diagnosis is important.

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.

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Whom to approach.

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 hospital’s OPD (out patient department). Or go to specialized clinics like Memory Clinics run by dementia organizations, senior citizen organizations, NGOs, etc.

Some persons with symptoms may refuse to see a doctor. They can be suspicious. They get angry if you force them to see a doctor. 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.

When there is a risk of the vulnerable senior or person with comorbidities contracting a serious infection by traveling/ exposure in a medical facility, telemedicine can be used for an initial consultation. Try to use a video consultation to better explain the situation and maybe include video clips to demonstrate the problems. The teleconsultation may give a better perspective on whether a doctor visit is required, whether some tests are required, and so on.

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Diagnosis of dementia.

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 and 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. They may use a “Mini Mental State Examination” (MMSE) test or a similar test to see the cognitive status. 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.

Tests are also done to check for additional medical problems., like blood tests for vitamin B12, thyroid hormones, and various deficiencies. Brain scans may be done to 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 person has all-cause dementia. The doctor also tries to see which specific diseases are causing the symptoms (differential diagnosis). Examples are Alzheimer’s, Lewy Body Dementia, Fronto-temporal dementia (FTD), vascular, etc. Often doctors give only a tentative diagnosis, using 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) or Mild neurocognitive disorder. This is a clinical diagnosis based on subjective assessment of the cognitive decline compared to the person’s previous level of functioning. MCI can occur due to many reasons and is not dementia. Some persons with MCI will develop dementia later. Others will stay at that same level or may even improve.

MCI is a relatively new type of diagnosis. MCI may be amnestic (where memory issues are predominant) or non-amnestic (other cognitive issues are impaired). It is possible to do some biomarker tests to decide whether this is MCI (also called syndromic MCI, where causes are unknown or other than Alzheimer’s) or is MCI due to Alzheimer’s disease, where the symptoms have a specific underlying cause – distinct pathology characteristic of Alzheimer’s. However, such testing is very uncommon in India.

While there is no medication for MCI, a person with MCI should be more careful to adopt a healthy lifestyle and consider changes to make life simpler given the impairment. Some dementia support organizations offer services for cognitive engagement/ cognitive activities sessions designed for such persons. Also, as a significant percentage of persons with MCI will develop dementia later, families have to remain alert about further decline and get check-ups done.

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.
  • There are no approved guidelines yet to clinically diagnose Alzheimer’s Disease or pre-clinical Alzheimer’s Disease using biomarkers.

Confusion about the diagnosis process is mainly because of a proposed approach. Experts have suggested using a three-stage model for Alzheimer’s Disease. The first stage is pre-clinical AD, where 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, which includes two biomarkers, was first described in 2011. Biomarkers are not commonly 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.

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Problems in diagnosis (missed diagnosis, wrong diagnosis).

Doctors may miss the dementia diagnosis or 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 due to 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 be missed.
  • A diagnosis mentions a wrong irreversible 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 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 problem causing 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 another additional 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, they should not think that someone has dementia just because the person has memory loss or other symptoms.

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After the diagnosis.

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. 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 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 longer. 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. There are websites and books on these topics. Resources like Dementia Mentors (check “See Also”) may be useful for them. Also, 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. Look for information on the type of support available. See the “See Also” section below for some suggestions.

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Treatment and Research.

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 approved medicines to cure the underlying disease, or even slow it. Media reports around this can be misleading. Here are some points to note:

  • 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 from Biogen, Aduhelm (aducanumab), which works on reducing amyloid deposits in the brain and is aimed at MCI/ early AD where the AD is amyloid-positive, requires administration by IV and needs supervision, is extremely expensive, and had known side effects. This approval followed a special pathway and was controversial. In early 2024, it was reported that the drug was being discontinued. India has not yet approved this drug. Another drug, Leqembi (lecanemab-irmb) has received approval from FDA; this again is a very expensive drug requiring IV administration, and not yet approved in India. (India has no approved disease modifying treatment yet).
  • Media reports on alternate therapies and herbs can cure dementia are misleading. Some such therapies can even harm. Popular therapies mentioned are coconut oil, cannabis oil (CBD oil) , etc. More discussion on these is available on the page on Dementia risk factors related research on this site.
  • 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 currently available treatment is providing symptom relief, such as relief from memory problems. Some of the available medicines work in some persons for some time, but do not work for others. They do not affect the underlying brain changes or alter the course of dementia. Most drugs work best for people in the early or middle stages of dementia.

Additionally, anti-psychotic medicines may be considered for behavior challenges if non-pharmacological methods do not provide adequate relief. Most persons with dementia experience behavioural and psychological symptoms (BPSD) (examples: aggression, agitation, loss of inhibitions, delusions, etc) and these can be distressing or harmful. Some doctors prescribe anti-psychotics to help the person and family cope. But such medication may not help and can even increase the risk of serious problems, accelerate cognitive decline and increase sedation. In general, the recommended approach is to try non-medicine approaches first, and use these only as a last resort (such as when the person may harm themselves or others) and only under the guidance and ongoing review of an expert, and taking into account the health, quality of life, and multiple medical conditions of the person. Of special caution here is whether the person has Lewy Body Dementia (which may be misdiagnosed as Alzheimer’s) , where antipsychotics can cause a lot of harm. Therefore, families need to discuss pros and cons related to any prescribed anti-psychotics with their doctor.

Medicines are also used for vascular health, and to address other medical conditions that can affect dementia symptoms and progression. Related conditions like depression are also treated.

Note that 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.

It is important to get the doctor to review any prescribed medications and their dosages regularly. Telemedicine may be suitable for follow-up consultations if it is not an emergency, and no physical examination is required. 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.

Medication should only 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 increase the risk of falls and also increase daytime drowsiness and confusion. 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:

  1. For normal people: how to prevent onset.
  2. 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.)
  3. 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.

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Risk factors for dementia and what we can do.

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 at 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 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.
  • Remain alert on hearing loss (partial or complete) and opt for hearing aids as this 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. This is an active field of research, and one term, dementia pugilistica, is also used for dementia said to result from repeated blows to the head. This is still being studied. In any case, be careful while playing contact sports where head injury is common, like football and boxing), stay safe when driving and travelling, like safe driving, avoiding drunk driving, use of helmets, seat belts, and use fall prevention techniques, like better lighting, even walking surfaces, improving balance, and so on, 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 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, remain 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.

Recently, there is some discussion on how some infections increase the risk of developing dementia, such as some correlation data of COVID and dementia. While the studies may not be firm enough to establish a clear relationship, in any case, staying safe from serious infections like COVID is advisable, especially as seniors are more likely to have complications and also more likely to get disoriented if infected.

To reiterate, there is no certain way to avoid getting dementia. 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.

See the “See Also” at the bottom of this page for further reading on risk and protective factors.

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Genetics (risk if close relatives have dementia).

Dementia symptoms can be caused by multiple diseases, and each of these have different genetic risks. But broadly speaking, most dementia is late-onset and not inherited. Genetics and dementia are an active topic of research.

We get our genes from our biological parents, one set from our biological mother and one from our biological father. In some cases, there may be permanent changes in some genes – genetic variants. We may inherit such a variant from one parent or both parents. Most variants don’t cause diseases.

  • Single-gene disease: This is rare but serious. Some gene variants are “deterministic” -A child may inherit such a gene and thus be at risk. The risk may be associated with having one gene (autosomal dominant – where a single copy of the gene determines the disease) or both (autosomal recessive, where having two copies of the gene is determinant).
  • Complex or multi-gene disease: Some gene variants (“risk genes, risk variants“) can increase (or decrease) the risk of a disease, but are not a determinant of disease. Having these gene variants increase the person’s risk of developing the disease, and the amount of risk depends on whether we have one risky gene or two, as well as many other factors like environment and lifestyle.

Single-gene disease onset happens before 65 years (childhood dementia or young onset dementia) but he exact age of onset varies. One situation is “childhood dementia“, a very tragic but very rare situation that may be caused by any of around 70 rare neurodegenerative genetic disorders (the world-wide prevalence of childhood dementia is around 700,000, around 1 every 2800 live births). Down Syndrome, a chromosomal abnormality (trisomy 21), speeds up the formation of beta-amyloid plaques and greatly increases the chance of developing dementia as the person grows older. Other genetically caused dementias include Huntington’s Disease, which is a rare (1 in 10,000) autosomal dominant disease where children have a 50% chance of inheriting it, and the while the person inheriting the gene will develop dementia, the age of onset is not certain.

Even in common forms of dementia (Alzheimer’s, Fronto-temporal Dementia, etc), there is a small percentage of young onset that may be due to a single, changed gene which may be inherited (also called “familial” (genetic) forms of dementia. These are rare, but onset is before the age of 65. For example, Familial Alzheimer’s Disease onset is likely to be in the 30s, 40s and 50s, but seen only in 1% cases of the disease. Familial FTD accounts for an estimated 30-40% of those with FTD, and again the age of onset varies.

If your (blood-related) family member has young onset dementia, you have a higher chance of having inherited it. But even for known forms of inheritable dementia, like Huntington’s Disease, even if the child has inherited the gene and will definitely get the disease, it is still not known at what age the child will get dementia.

Genes associated with complex disease increase the possibility of dementia if other factors are also present, like lifestyle, but do not make it a certainty. The much talked about APOe4 is one such gene. People who inherit one copy of APOE4 (roughly 25%) are around three times more likely to develop late onset Alzheimer’s disease. Those who inherit two copies of APOE4 (around 2%) are eight times more likely to develop Alzheimer’s. However, even those who inherit one or two copies of APOe4 may never develop dementia because of other factors like age and lifestyle.

It is important to remember that most cases of dementia happen only in older persons (late-onset dementia), and these are caused by several factors. The main risk factor for late onset dementia is age, not genetics. The presence of a risk-variant gene does not determine that dementia will develop . Also, many persons who develop dementia may not have any of the risky genes. In other words, for complex disease gene variants (like APOe4) , having the risky gene does not mean the person will develop that dementia disease, and not having it does not mean the person will not develop it.

Concerned relatives of someone with dementia (especially early onset dementia) can ask their doctors whether genetic testing may be useful for them. One factor is considering whether the test results would affect how you plan your life. 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.

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See Also.

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 :

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.

Advanced reading: to know more about current medication and also some commonly talked about alternate therapies for dementia, see:

  • 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.
  • 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:

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 medicines and dementia:

For dementia risk factors and possible protective measures:

For genetics and dementia:

Some links to read more about prominent persons with dementia:

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