When Do the First Symptoms of Dementia Typically Appear and What Steps to Take If You Suspect a Loved One is Affected: Understanding the Disease and Treatment Options

At the end of last year, we asked readers what they wanted to know about dementia – about treating this condition, preventing it, diagnosing it, and any other aspects. We received a large number of questions and, together with experts, tried to answer most of them.

PART 1 – What is dementia and when can it start?

What is dementia?

Dementia now refers to a significant decline in several cognitive functions (two or more), which is stronger than one would expect at the person’s age and with existing illnesses. Often, but not always, memory impairment is involved. Other functions such as language proficiency, decision-making, planning, concentration, and others may also suffer. Such impairment must significantly affect a person’s ability to live independently, and only then can this condition be called dementia.

There are many causes of dementia – these can be neurodegenerative diseases (i.e. diseases that lead to the death of nerve cells, including Alzheimer’s disease and frontal-temporal dementia), prolonged alcohol abuse, or traumatic brain injury. However, age alone is never a cause.

How does dementia feel from within?

It’s difficult to answer this question, especially since diseases that cause dementia can manifest differently. In any case, people with dementia regularly find themselves in situations where they are convinced of something, but those around them do not see the “obvious”, or when loved ones try to control them “for no reason”. “Imagine: you are calmly doing your everyday business, going to your summer house, cooking, and suddenly your loved ones start saying that you need to go to the doctor, that you can no longer cope,” explained gerontopsychiatrist and co-founder of the “Alzrus” foundation, Maria Gantman.

Additionally, a person with dementia can constantly find themselves in situations where they don’t understand what is expected of them and why things are happening that don’t make sense. This will cause various emotions and feelings such as anxiety, a sense of threat, and anger.

A person with dementia may constantly follow a close companion around the house, accompanying them to the kitchen, bathroom, etc. According to the British National Health Service, such behavior may actually be a sign that the person with dementia needs constant reassurance of their own safety. Lack of self-confidence can lead to the person stopping doing what they once loved. In other words, the emotions and behavior of a person with dementia may be caused not by the first thing that comes to mind (such as hatred, just being strange, or wanting to cause harm), but by completely normal and innocent causes (hunger, the need for safety, boredom, anxiety).

In addition, a person with dementia finds it difficult to control the expression of their emotions.

What to watch and read about this?

If you don’t have much time, watch the movie “The Father” to understand how a person with dementia feels.

If you have a little more time, there are several books that describe in detail how a person with dementia sees what is happening.

• • “Still Alice” by Lisa Genova; a film adaptation of the book was made with Julianne Moore in the lead role.
  • “That’s amore, Mr Alzheimer: A true story” by Flavio Pagano”
  • “Elizabeth Is Missing” by Emma Healey; a movie adaptation of the same name was made based on the book.

But it is important to keep in mind that the listed books are fictional and only the speculations of the writers (even if Lisa Genova studies neuroscience and Flavio Pagan’s mother had Alzheimer’s disease and he cared for her). The only known book written by a person with dementia (vascular dementia) is “Memory’s Last Breath: Field Notes on My Dementia” by Gerda Saunders. There is also Barbara Lipska’s book “The Neuroscientist Who Lost Her Mind: My Tale of Madness and Recovery” which is a first-person account of a condition that was very similar to dementia and developed against the backdrop of brain swelling due to metastases, but it cannot be confidently said that a person with Alzheimer’s or other common forms of dementia feels the same way.

What are the stages of dementia?

It all depends on the disease that led to dementia. But dementia is usually a progressive illness. The question is only how it will progress – in each case different skills may be lost first. For example, with Lewy body dementia, memory may suffer later, and the first symptoms will be poor attention, unusual for a person, as well as equally atypical problems with planning and organizing affairs. With Alzheimer’s disease, everything is different – in most cases, memory is the first to suffer.

If we are talking about general characteristics, in the International Classification of Diseases, the development of dementia is divided into three stages:

• • Mild dementia – a person can live independently, have some social life, but still needs help with complex tasks (such as paying bills).
  • Moderate dementia – a person can no longer handle things outside of the home, and at home can only do something elementary – for example, they can dress and take a shower, but even this is often difficult for them; their behavior changes (aggression may appear, the person may start shouting at people, leaving the house with unclear goals, etc.);
  • Severe dementia – a person is disoriented in time and space, does not understand what is happening, and cannot even cope with simple daily tasks without the help of others.

Another common characteristic of various types of dementia is that the older a person is, the faster dementia will lead to their death. Although there are exceptions. For example, frontal-temporal dementia usually develops in younger people, but progresses faster than Alzheimer’s disease – on average, a person dies within 8-10 years. In addition, people with frontal-temporal dementia are more likely than others to have lateral amyotrophic sclerosis (LAS); a person’s life with two diagnoses is even shorter.

It is believed that vascular dementia is more lethal than Alzheimer’s disease because it is usually accompanied by diseases that worsen the functioning of the cardiovascular system, and for example, myocardial infarction is more likely. At the same time, any averaged data on the lifespan have little meaning because the prognosis may vary depending on the cause of vascular dementia (due to one stroke, several transient ischemic attacks, which are also called “micro-strokes”, or narrowing and blockage of small vessels in the brain), what areas of the brain are damaged and what comorbidities are present. With vascular dementia, even short-term improvements in condition are possible.

A person with Alzheimer’s disease can live from three to twenty years – much depends on how early the diagnosis was made: if it was made in the early stages, then the person will live longer with knowledge of the disease.

At what age can signs of dementia appear?

Dementia can occur even in a child, but this is, of course, extremely rare. And in the overwhelming majority of these rare cases, it is related to some genetic disease, the symptoms of which include not only dementia. Most often, it is neuronal ceroid lipofuscinosis. But it can also be mucopolysaccharidosis type 3 and other diseases.

If dementia occurs before the age of 65, it is called early-onset, because the risk of its development increases with age on average. For example, after the age of 60, the risk of developing Alzheimer’s disease doubles every 10 years. However, for frontal-temporal dementia – one of those that occur early – the average age of onset is 58.

Can COVID-19, brain surgery, or cancer treatment cause dementia?

Usually, conditions that arise after these illnesses or interventions are not called dementia, although dementia can certainly develop in some cases as a result of HIV infection, head injury, multiple sclerosis, or radiation therapy targeting the brain. Cognitive impairments of varying severity also arise after COVID-19 (especially in cases where the person was in the intensive care unit).

But there is dementia, and there is mild cognitive impairment, and in medicine these concepts are distinguished. The fundamental difference between them is that with dementia, everyday life is so affected that a person needs help. With mild cognitive impairment, he can handle it himself.

PART 2 – Can dementia be prevented?

What can be done for the prevention of dementia?

Often in the media and blogs, the answer to this question is confidently given as a healthy lifestyle. But the problem is that there is currently no strong evidence that physical activity, a balanced diet, and adequate sleep will protect against dementia caused by the most common neurodegenerative diseases like Alzheimer’s or Lewy body dementia. There are studies that have shown, for example, that physically active people are less likely to experience dementia, but this is not about a causal relationship, only about correlation, which may have not the most obvious reasons. At the same time, in theory (based on what is known about brain function), these activities can prevent the development of dementia. Moreover, they are mostly activities that are definitely useful for other reasons (it’s hard to argue against the importance of getting adequate sleep, for example). Therefore, specialists (not all of them), even without convincing reasons, recommend simple but important things for the prevention of dementia.

Be physically active

The World Health Organization has made recommendations on this matter.

To meet the recommended physical activity guidelines, one should engage in either:

• • 150 to 300 minutes of moderate-intensity physical activity with aerobic load each week,
  • at least 75-150 minutes of high-intensity physical activity with aerobic load each week,
  • or a combination of moderate and high-intensity physical activity that provides the same level of physical activity. It’s worth noting that one minute of high-intensity activity is considered equivalent to two minutes of moderate-intensity activity.

Follow your diet

The dietitian offers concise and straightforward nutritional guidance based on the Swedish guide, which emphasizes the importance of consuming more vegetables, fruits, berries, nuts, seeds, fish, and seafood while engaging in physical activity. Conversely, it also suggests reducing the intake of red and processed meat, salt, sugar, and alcohol.

Get enough sleep

Each person has their own normal amount of sleep, but for most it’s seven to nine hours. Moreover, the sleep should be of high quality: if you sleep as much as you usually need, but keep feeling drowsy during the day, or constantly wake up during the night, or your partner says that you stop breathing for a while in your sleep, then, apparently, the quality of your sleep is not very good and it’s better to consult a doctor.

Employ your cognitive abilities

It is believed that the more formal education a person receives, the higher their “cognitive reserve” is, which hides brain damage for some time. However, when dementia still develops, its course can be more rapid.

But overall, throughout life, including after retirement, it may be useful to maintain intellectual activity: reading, practicing art, playing musical instruments, studying foreign languages, speaking on them, playing board games, solving crosswords. Although specifically designed programs aimed at memory training and other cognitive functions have not shown themselves to be the best in research.

Communicate with other people

Communication with other people can also be helpful. It is especially good if the person you can talk to is always nearby. But communication with colleagues, meetings with friends and family, working with other people on a common cause (for example, volunteering) – in theory, all of these can help in the prevention of dementia.

The British National Health Service has a whole set of recommendations on how to deal with loneliness in elderly people:

• • Smile more often and initiate conversations or ask others about themselves
  • Invite friends or family over, call them, or use technology to communicate with those who can’t be reached by phone
  • Join groups that align with your interests, such as book clubs, sports teams, choirs, or volunteer organizations
  • Plan out your week and incorporate activities, even if they don’t involve socializing directly, such as going to a museum, café, library, or cinema
  • Sign up for courses to learn something new and pursue a long-standing interest.

Monitor your blood pressure

High blood pressure usually does not cause any noticeable symptoms. Therefore, to determine if there is a problem with it, it is necessary to regularly check it (this applies to all adults). However, how often to check is unclear. In any case, it is better to discuss this with a doctor who knows your risk factors. If the pressure is high, then it is quite likely that you will be offered medications to control it (quitting smoking will also be beneficial).

Use a hearing aid

If your hearing has deteriorated with age, it’s better not to put up with it and use a hearing aid. There are currently no scientifically based recommendations to regularly check your hearing from a certain age, but there are known signs of hearing problems. The British National Health Service lists such signs:

• • You do not understand what others are saying well, especially in noisy places.
  • You ask people to repeat what they said;
  • You always need to make the sound on the TV louder than for other members of the family.
  • You have poor hearing when someone is speaking on the phone.
  • It is difficult for you to keep up a conversation.
  • You get tired or feel tension because you have to concentrate when you listen to something

Do not live where the air is dirty

Of course, moving is much more difficult than doing everything else. Nevertheless, it cannot be denied that people living where the air is heavily polluted are more often faced with dementia.

Several studies have aimed to investigate whether medication or dietary supplements can prevent the onset of dementia. Regrettably, these studies have indicated, at most, no positive effects. In fact, some methods may even be harmful, even if there is an objective increase in the risk of developing dementia. Ineffective prevention methods include:

• • Multivitamins and individual vitamin supplements
  • Acetylcholinesterase inhibitors
  • Hormone therapy
  • Non-steroidal anti-inflammatory drugs (NSAIDs)
  • Ginkgo biloba

There are methods that simply have not been studied, and there are hardly any grounds to assume that they are effective.

At the same time, it is possible to talk about some prevention of dementia that develops not due to neurodegenerative diseases, but for other reasons. For example, there are various prevention methods for HIV infection (medications that can be taken before and after dangerous contact, condoms) and prevention of vitamin B12 deficiency (balanced diet and, as prescribed by a doctor, additional vitamins in the form of medications if you do not eat meat, dairy products, and eggs). The state can also participate in the prevention of dementia by preventing domestic violence (primarily through appropriate laws).

Dementia is an inherited disease?

Vascular dementia and dementia with Lewy bodies are less associated with genetic traits, and genetic testing is extremely rare in these cases.

But some genetic features still increase the risk of developing other diseases, which in turn lead to dementia. There is a whole set of genes known to have more or less influence on the development of Alzheimer’s disease. And sometimes it can be said that it is hereditary. For example, when there are corresponding changes in the genes APP, PSEN1, and PSEN2. In such cases, the risks are very high (100 percent in the first two cases and 95 percent in the latter) and the disease starts early – usually after 30 and up to 65 years old.

Relatives of individuals with Alzheimer’s disease, which developed after the age of 65 (especially close relatives), also have a slightly increased risk of developing this disease. This may also be related to genetics: some gene variants may slightly affect the risk of developing dementia in a specific person after the age of 65 (but they can be inherited, or can form in the person themselves). In particular, we are talking about genes APOE, CLU, PICALM, CR1, and BIN1.

However, whatever these genes may be, there are other factors that influence whether Alzheimer’s disease will develop. And all of this will collectively affect a person.

Another form of dementia that may greatly depend on the features of genes is frontotemporal dementia. 30-50% of people with this disease have a relative with the same form of dementia. If a doctor suspects this diagnosis, they may suggest genetic testing, which, however, does not always detect changes in known genes (most often MAPT, GRN, and C9orf72).

Is it possible to undergo a genetic test and find out if I am predisposed to dementia?

Yes, but not always. And there are other nuances.

In particular, specialized organizations are opposed to testing the most well-known gene, APOE, which is involved in the development of Alzheimer’s disease after the age of 65 in patients without dementia. Regardless of its variant, it is difficult to say anything reliable about the likelihood of a specific person developing Alzheimer’s disease. It is not possible to recommend effective methods of preventing this disease to them.

At the same time, American medical societies recommend that people without symptoms who wish to check for genes that increase the risk of developing Alzheimer’s disease up to 95-100 percent do so in two cases:

1. 1. A person has a relative who is known to be a carrier of such a variant of APP, PSEN1, or PSEN2, in which Alzheimer’s disease develops.
   2. There is at least one person in the family who has developed Alzheimer’s disease before the age of 65 and has corresponding gene variants.

Some genes contributing to the development of Alzheimer’s disease after the age of 65 are tested in paid “entertainment” genetic tests. Before taking such a test, ask yourself the question: “What will I do if I am found to be at high risk for Alzheimer’s disease? Will it really benefit me if I know the result?” Even better – talk to a doctor (preferably a geneticist) about this.

And it’s important to remember: if the results of such a test indicate that you have a “high risk,” find out the details – it’s quite possible that they are referring to a risk that is only 0.5% higher than average. Moreover, these tests do not examine all the genes that are now known to affect the development of Alzheimer’s disease, nor all possible variants in known genes. In other words, they may not find everything.

People who have relatives with frontal lobe dementia can undergo genetic testing (especially if they know which pathological gene variant their relative has), but they need to consult with a geneticist before doing so. In any case, whether or not to have the test done is a personal decision.

Is it possible to test children for dementia?

In general, medical societies do not recommend testing children for diseases that typically develop in adults. The decision to undergo testing should be made by the individual themselves when they reach the age of majority.

However, some societies hold the view that if a child expresses a desire to undergo testing, they should speak with a geneticist. In several countries, the age at which a child can undergo genetic testing for such diseases has been lowered.

Is it true that some diseases increase the risk of developing dementia?

It is possible to say that people with certain diseases have a higher risk of developing dementia (of various types), so usually there is no established cause-and-effect relationship – only correlation is discussed. Such correlation has been established for:

• • Diabetes mellitus (mainly type 2 diabetes) was studied.
  • Arterial hypertension
  • Atrial fibrillation
  • Obstructive sleep apnea syndrome
  • Depressions
  • Bipolar disorder (but the risk is lower, although still higher than average, if a person takes lithium)
  • Schizophrenia
  • Increased anxiety (including anxiety disorder)

People who later develop dementia also often experience stress throughout their lives. But, perhaps, it is because of stress that people can abuse alcohol and do other harmful things for their health.

As for medications, doctors have the most confidence (although not very much) that dementia is more likely to develop after taking anticholinergic drugs in old age. The effects on the body of different drugs in this group are different. The stronger the drug or combination of drugs, the higher the risk. In any case, it is a bad idea to stop taking medications on your own. You need to discuss with your doctor what outweighs in your case – risks or benefits.

How to prepare if the risk of developing dementia is high?

You can leave instructions for your loved ones on how you want them to behave in a particular situation. Write down your wishes on paper or in electronic form – if you just tell everything to a loved one, they may forget or confuse something. When you write down your wishes, send or give them to those who may need them. In such a letter, you can answer the following questions:

• • Would you like to receive treatment if you are diagnosed with a life-threatening disease (such as cancer)? Does this desire depend on the stage of dementia? (Unfortunately, this desire cannot always be fulfilled.)
  • Do you want to have a nasogastric tube or gastrostomy installed if you can no longer eat and/or drink independently?
  • Do you want to undergo treatment for non-lethal diseases that affect the quality of life and are associated with various medical procedures (such as replacing the lens due to cataracts)?
  • Would you like to participate in clinical trials related to dementia if the opportunity arises?
  • Do you want to always be told the truth every time you forget that someone has died, or do you feel the need to go to work (even though you haven’t been working for a long time) or “home” even though you are already at home? Or can you be deceived?
  • Is it possible to give you pills by deception that you may consider poison?
  • Would you like to be visited by relatives, friends, and acquaintances whom you will no longer recognize?
  • Who do you definitely not want to see?
  • How should those around you behave if you need to see a doctor or if it’s unsafe for you to live without round-the-clock supervision, but you refuse to go to the clinic or move accordingly?
  • Do you want to stay at home until the end or are you willing to move to a specialized institution at some point? If you agree, what should it be like? Are you willing to move to a specialized institution temporarily?
  • Who would you like to see as your guardian?
  • What music should be played for you?
  • Do you have any preferences regarding the choice of clothing and footwear?
  • Do you want to continue coloring your hair, shaving your beard, or maintaining something else in your appearance?
  • And yes, where do you want to die (at home, in a hospital, in a hospice or in a specialized institution for people with dementia)?

Try to keep your documents in order: officially divorce if you have been separated from the person you once married, put a stamp in your passport if you got married or divorced abroad, obtain mandatory medical insurance policy, etc. This will save a lot of effort and time for the person who will handle your affairs when you are no longer able to.

PART 3 – Diagnosis

What are the first signs of dementia? Can they be noticed not only in another person but also in oneself?

Although dementia can present itself in various ways, there are certain symptoms that are frequently observed among individuals who are diagnosed with the condition after a period of time. However, it is important to keep in mind that when evaluating oneself or loved ones, the “count” should start from the baseline level. For instance, if an individual has always struggled with concentration, it should not be attributed to dementia after the age of 65. Here is a brief list of characteristics highlighted by various medical and patient groups:

• • memory impairment (a person forgets important dates, what he or she has just said or done, and repeats it, increasingly relying on to-do lists and reminder systems)
  • problems with concentration
  • problems with familiar daily tasks (for example, difficulty in remembering how to dress, how to prepare a dish that a person has cooked a thousand times)
  • problems with calculations (for example, if you need to calculate something using a calculator)
  • mood swings
  • Atypical mood change for a person (a person is usually depressed, suspicious, anxious, embarrassed, frightened).
  • It is difficult for a person to keep track of the conversation and choose the right words (sometimes they choose completely wrong ones).
  • A person gets lost in a familiar place and has difficulty navigating time (for example, cannot remember what day of the week it is today).
  • A person puts things in unexpected places (books in the refrigerator) or loses them.
  • A person evaluates circumstances worse and makes worse decisions (spends a lot of money on trifles).
  • The ability to plan, follow instructions, and tackle complex problems tends to decline.
  • A person tends to misjudge distance (for instance, when climbing stairs).

All of this can also be a sign of mild cognitive impairment, which does not deprive a person of their independence and does not always develop into dementia.

With vascular dementia, people, among other things, start thinking more slowly.

Due to the symptoms of frontal temporal dementia, people may first turn to a psychotherapist rather than a neurologist or psychiatrist. The thing is, with its most common form, behavior noticeably changes: people disregard social norms (for example, they may kiss a stranger), laugh when it’s completely inappropriate, become impulsive, rude, insensitive, neglect hygiene, lose interest in activities they used to enjoy, easily get distracted or become obsessed with something to the point of being unable to stop, eat a lot (sometimes things they didn’t like before or even inedible objects), may not always make it to the bathroom in time, and can repeat the same action over and over again.

Even in the early stages of dementia with Lewy bodies, hallucinations can occur. Another important symptom is periodic changes in consciousness. A person may not react well to what’s happening, may stare at one point, and speak incoherently. Then it passes. People with this form of dementia often move actively and even speak during one of the sleep phases when they experience dreams. As a result, they can harm themselves and/or whoever is in bed with them (but there are other diseases that have the same symptom, and a similar effect can occur from taking certain antidepressants).

Unusual onset of dementia

But even Alzheimer’s disease can begin not with a decline in memory and other typical symptoms. For example, neuroscientist Joseph Jebelli describes in his popular science book “In Pursuit of Memory: The Fight Against Alzheimer’s” a case where the first symptom of one form of dementia was problems with image perception – at that time, the book’s heroine, a woman named Pam, could not navigate a map and saw a “mess” instead. A few months later, something happened: (no continuation of the sentence provided)

…when she was working on her last masterpiece [puzzle] – an exotic Spanish garden – she suddenly realized that the pieces stopped fitting together. Pam knew where to put them, but she physically could not turn them the way she needed to. In addition, she found it difficult to read newspapers if the article continued on the next page and there was no note – then Pam would read the line and could not figure out where to look next. And then, in June 2014, Pam discovered that she was lying on the floor in the bathroom and did not remember how she got there. She had a seizure.

After some time (not immediately), Pam was diagnosed with posterior cortical atrophy (often classified as an unusual form of Alzheimer’s disease). This is a form of dementia where a person initially has difficulty visually recognizing familiar objects and performing habitual actions, and then develops typical Alzheimer’s disease.

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All of these symptoms are not always noticeable to the person with dementia (and this is part of the disease), and loved ones may attribute them to something else for some time. But it is important to seek help in a timely manner in order to slow down the development of the disease, or prevent problems associated with its development. Therefore, if there are suspicions of dementia, you can start by taking a home test.

“The MiniCog test, loved by everyone, is very simple and sensitive enough,” writes a gerontopsychiatrist who was approached. “You don’t have to be a specialist to conduct it. It can and should be done at home if there are suspicions, but it is still better to consult a doctor who can conduct more comprehensive testing to identify any disorders.”

Which doctor diagnoses dementia?

This can be done by a neurologist, geriatrician, or psychiatrist. As explained by a gerontopsychiatrist contacted by us, all of them can perform the necessary neurological examination for diagnosis. But there are nuances.

“When it comes to dementia, the most important thing is to determine the cause of the disease, and in some cases, neurologists are more knowledgeable about the causes of dementia than regular psychiatrists,” explained gerontopsychiatrist Maria Gantman. The problem is that doctors can still say, “Well, what do you want? It’s old age.” Therefore, it is likely that the best diagnostic specialist is the one who is available and does not use such arguments, as well as does not diagnose “cerebral circulatory insufficiency.”

What examinations do you need to undergo to diagnose dementia?

First, the doctor will ask various questions (both to the patient and to the person accompanying them, in order to form a more or less objective picture of what is happening). It is important to tell not only about the symptoms, but also about what medications the person is taking or has recently taken (including over-the-counter drugs and dietary supplements). It’s better to write down all the names and dosages in advance for this purpose.

The doctor will also ask to perform some tasks (draw a clock, walk), to understand whether there is any dementia in this case.

Sometimes doctors prescribe laboratory tests for a person with signs of dementia if they suspect a specific cause of the symptoms. However, there is no universally recognized list of tests that need to be done for every person.

When a doctor determines the most probable cause of dementia, they may suggest undergoing several tests to confirm the diagnosis. These usually involve some form of tomography (typically magnetic resonance), certain laboratory tests (including genetic ones), and perhaps even polysomnography and myocardial scintigraphy (in some cases of suspected Lewy body dementia).

How to distinguish dementia from other conditions?

This may not be easy, but it’s a matter for doctors. Common illnesses that cause dementia can resemble:

• • Depression
  • Bipolar disorder
  • Brain tumor or abscess
  • Obsessive-compulsive disorder (OCD)
  • Delirium

In all of these cases, there are diagnostic tests (questionnaires, tomographies) that help distinguish one from another. Although sometimes it can be very difficult, especially since these disorders and diseases can coexist with dementia. For example, if a doctor suspects depression but cannot make an accurate diagnosis, a specialist may prescribe antidepressants – if they have an effect and the person returns to their previous state, then it was solely due to depression.

It’s important to distinguish dementia not only from other pathological conditions, but also from a normal state. Often even obvious signs of dementia are attributed to age, but it can be the opposite as well. In fact, changes that occur in brain function with age are different from signs of dementia – primarily because age-related changes don’t affect a person’s ability to carry out familiar tasks, such as cooking, using the phone, or planning their day. It may take longer to do these tasks and doing more than one thing at a time or dealing with busy environments may not be possible anymore. Perhaps some serious problems will arise from time to time (like if a person loses their apartment keys or forgets to pay their gas bill once). But all of this won’t affect a person’s autonomy even at 95 years old. And age doesn’t affect all functions – people generally continue to recognize objects and faces.

There is also mild cognitive impairment, which has already been mentioned. It is something in between dementia and normal age-related changes. However, it also does not prevent a person from living independently.

If a relatively young person often forgets words, can’t remember if they locked the door to the apartment, or leaves small things out of place, could this be a sign of dementia?

Unlikely: dementia still significantly affects the quality of life, the ability to take care of oneself, and often the condition deteriorates over time. Therefore, for readers who have sent us such questions, their current condition may be either normal or a sign of some non-dementia disorders and conditions.

If all these features have always been with you, then perhaps it’s dyslexia, attention deficit hyperactivity disorder, or something else.

“When an average person who has always been able to absorb information suddenly starts forgetting everything, it could be a depressive episode, an anxiety disorder,” wrote a gerontopsychiatrist consulted by “Meduza”. “… In other words, with such symptoms in a young person, we can suspect anything except dementia, from hypothyroidism to anxiety disorders.”

What to do if a person refuses to see a doctor and their condition keeps deteriorating? What laws are there regarding this matter?

To begin with, you can try to talk calmly and with arguments. For this, the British Alzheimer’s Society recommends:

• • Choose a comfortable, familiar environment;
  • Choose a time when nobody is in a hurry anywhere.
  • Speak without judgment and demonstrate support;
  • Ask if the person has noticed that something has changed in their behavior.
  • Tell what you noticed (just in case, it is better to keep a diary for some time – it will be useful as a evidence of your rightness and later at the doctor’s appointment). It is important to emphasize that your main motive is care for the person and concern for them.
  • Explain what a doctor can do.

A person can refuse due to fear of being diagnosed with dementia. Or because they do not believe you. Or for other reasons.

In this case, you can draw a person’s attention to the fact that they have problems that truly bother them. For example, insomnia or the fact that they can no longer read. And this is a reason to see a doctor.

On the “Altsrus” foundation website, there are also such recommendations:

• • Propose to make a scheduled examination with a doctor who specializes in the health of older people.
  • Attract authorities (you can refer to the fact that grandchildren consider a visit to the doctor important, a favorite “TV doctor”, politician, actor, etc.).
  • Suggest going for a check-up with the whole family or friends.

If you managed to persuade your loved one, but before going to the doctor he declares that there was no agreement, it may be worth giving up. “Most often, by persuading again, you are late to the point that you may no longer need to go, most likely, the appointment will be missed,” writes a gerontopsychiatrist, to whom “Medusa” turned. – You can call a doctor at home. <…> A person is usually ready to interact with a friendly, interested in the patient’s health doctor.

If you cannot get a person to a doctor and the situation is getting worse, can you deprive the person of legal capacity through the court in order to make decisions for them? The “Altsrus” foundation has instructions on how to do this, but the process can take many months.

If you believe that a person is dangerous to themselves or others, if they are helpless or without psychiatric assistance their mental state will deteriorate, causing harm to their health, then an ambulance can be called. It is quite possible that this will result in involuntary hospitalization.

Do I need to undergo screening for dementia?

No. Currently, medical and governmental organizations do not recommend such tests or refrain from making recommendations. And if there are no symptoms and no suspicion of a gene variant that leads to dementia with a high probability, there is no need to undergo any tests. Moreover, there are no studies that could reliably indicate dementia before symptoms appear.

If it so happened that you underwent one of the types of tomography and signs of brain damage were detected there, characteristic of diseases leading to dementia or predisposing to it (for example, leukoaraiosis), then you need to remember the following. It is still unknown whether all people with corresponding brain damage develop Alzheimer’s disease symptoms. The same applies to Lewy body dementia and vascular dementia. Changes in the brain that can be detected using tomography occur more frequently than dementia itself.

PART 4 – How is dementia treated?

Can the condition be improved with medication?

Only in a few cases is dementia curable. For example, medications with vitamin B12 can help with a deficiency. However, neurodegenerative diseases (in particular, Alzheimer’s disease, Lewy body dementia, frontotemporal dementia) cannot be cured. There are medications that can alleviate symptoms in some cases though.

People with Alzheimer’s disease are primarily prescribed cholinesterase inhibitors (donepezil, rivastigmine, galantamine). In the best case, these drugs have a moderate effect on symptoms (presumably even in the advanced stages of the disease). But if the effect is not noticeable, the therapy is discontinued (preferably gradually reducing the dose). Usually, the effect is evaluated after three to six months, and then the person’s condition is checked every six months to a year. If the drug causes unwanted reactions, the doctor may try to replace it.

Another medication that is prescribed for people with Alzheimer’s disease is memantine. It is used alone and in combination with cholinesterase inhibitors. But memantine is not used in the early stages. Don’t expect significant improvements from memantine either, but moderate effects can occur in many cases.

In the United States over the last two years, the use of two drugs to treat Alzheimer’s disease has been allowed: aducanumab and lecanemab. However, they are not available in the European Union and Russia. In fact, the decision of the American regulator was very controversial. The fact is that it is still unclear whether these drugs improve the condition of patients enough for it to be noticeable.

If a person has vascular dementia, the goal of treatment will be to prevent further damage to the blood vessels and, consequently, the brain. The problem is that such an approach, although logical, does not have a good scientific basis. In any case, keeping blood pressure, cholesterol and sugar levels within normal limits is beneficial for other aspects of health.

If a person had a stroke, doctors are likely to prescribe additional antithrombotic drugs (such as warfarin anticoagulants or antiplatelet drugs such as aspirin or clopidogrel). If Alzheimer’s disease is also suspected along with vascular dementia, doctors prescribe cholinesterase inhibitors. However, recently there have been data that allow cautiously recommending these drugs even in cases where there is only vascular dementia (but not after a stroke).

The situation with the treatment of frontotemporal dementia is quite complicated. Currently, there are no medications that have been proven to significantly affect its course or the severity of symptoms, and patients and their loved ones have to rely on non-pharmacological methods (for example, identifying and eliminating triggering factors for undesirable behavior is recommended). However, in theory, antidepressants – selective serotonin reuptake inhibitors or trazodone – can affect behavior. There are also studies of varying quality that show promising results in this regard. Despite the fact that these indications are not listed in the instructions for these medications.

In extreme cases, a doctor may prescribe antipsychotics, but it is dangerous as it can lead to life-threatening side effects.

In dementia with Lewy bodies, there are not many options either: the best available data suggest the use of cholinesterase inhibitors (mostly donepezil and rivastigmine). They can moderately reduce the severity of cognitive impairments and behavioral problems. Currently, there is no reliable data on how long to continue this treatment, but some specialists recommend starting with six months. If cholinesterase inhibitors are poorly tolerated or ineffective, a doctor may prescribe memantine, but there is even less data on it. Antipsychotics, as with frontotemporal dementia, are used only in extreme cases. And if used, modern drugs are used, not haloperidol.

To prevent a person from twitching in their sleep, melatonin and clonazepam are used. Other symptoms that occur with Lewy body dementia (parkinsonism, urinary incontinence, orthostatic hypotension, etc.) can also be corrected with medication, but the problem is that the doctor always has to navigate between the desired effect and undesirable reactions, including worsening of other symptoms.

There are many other drugs being researched for the treatment of dementia, but currently there is not enough data to include them in recommendations. You can participate in a clinical trial of one of these drugs, but be careful: in developing states, trials of homeopathic remedies for the treatment of dementia and other remedies are being conducted, which in theory should not work.

What you need to know about clinical trials?

For example, the mechanism of action of extracts from the brain and other organs of different animals is still unknown, and these preparations are not recommended by medical communities that rely on evidence-based medicine in their guidelines. Nevertheless, such drugs are actively used in Russia, and clinical trials are conducted with them. Fortunately, the method of obtaining such a preparation is usually indicated directly in the description.

There are also medications that belong to the group that used to be called homeopathic remedies (homeopathy, we remind you, has no proven effectiveness for any disease and cannot work even in theory). However, they were later rebranded and declared “release-active” (which still meant the same thing: there are no molecules of the active substance in the medication).

And then they rebranded again – now the substances in these drugs are measured in “units of modifying action”. We could not find any mention of this unit of measurement anywhere else except in texts related to the corresponding medications. It is also unclear what the size of this unit is compared to grams. The company “Materia Medica” specializes in such drugs. Its name will be indicated in the clinical trial data, which will immediately help you make a decision.

Are there any annual check-ups required for confirmed dementia?

Yes. But we can’t provide a single list. There are general recommendations for people of a certain age, but for older people, they may depend on overall health status. All of this needs to be decided individually with a doctor.

People with dementia are advised to check their hearing, vision and oral health. For example, official British recommendations state that vision should be checked every two years. Regular visits to the dentist will also be beneficial, as over time it becomes more difficult for people with dementia to communicate if something is hurting them. However, how often to do this depends on the condition of the oral cavity. If there are already any other illnesses, it is also best to periodically consult a doctor about them.

Regular vaccination is also necessary to protect a person from infections that can kill them (and initially symptoms are not always obvious, and a person may simply not be able to report feeling unwell). In older age, this includes at least vaccination against the flu (every year) and pneumococcus.

How to convince a loved one to take their medication?

“If a person refuses to take medication, considering them poison, then there are no magical tips that could persuade him,” explains a gerontopsychiatrist. The doctor, like the British Alzheimer’s Society, recommends trying other forms of medication – not just tablets and capsules, but patches or drops.

Medications can be hidden in food and dissolved in drinks, but not all of them – often this can affect the effect of the drug or the likelihood of adverse reactions, so it is necessary to read the instructions first and consult with a doctor.

However, it is necessary to distinguish situations when a person realizes their illness and the consequences of their actions from situations when such refusal is a direct consequence of the disease. In the first case, a person has a legally established right to refuse treatment.

PART 5 – How to help a person with dementia.

How to support a person with dementia?

Reactions to a diagnosis can vary greatly (from relief to sorrow), so the main universal recommendation that can be given is to listen, not brush off another person’s emotions and let them know that you are there for them.

Don’t forget about the sense of humor – it can be lifesaving.

Other recommendations that will be useful primarily at later stages of the disease and will help support a person include:

• • To give a close person the maximum possible freedom and not to do for them what they can do themselves (just probably slower).
  • To perceive him as a person – to continue communication in any possible format, to include him in conversations and affairs, not to speak about him as if he is not there, not to speak to him as if he were a child.
  • Repeat if a person has forgotten something, and do not remind them that you have already discussed it.

People with dementia may develop depression, but there is currently no reliable evidence that antidepressants work well in these cases, so it is recommended to seek help from a psychologist first. You can monitor the state of your loved one and organize a specialist consultation if necessary.

When a person is diagnosed with dementia before the age of 65, their risk of suicide significantly increases. The first few months after the diagnosis are dangerous in this sense at any age. Therefore, do not be afraid to ask directly about such thoughts and pay attention to suspicious signals (for example, if you see that a person is hoarding medication or buying weapons).

How to make the life of a person with dementia comfortable – without sacrificing oneself?

The stronger the disease progresses, the more help a person with dementia will need, and at some point, around-the-clock care will be required. If one person is providing assistance, it will be incredibly difficult for them, and their lifestyle will undoubtedly change significantly. Therefore, the first recommendation after the diagnosis is to gather a family council. This will help distribute responsibilities, discuss expectations from each other, so that there are fewer reasons for conflicts later on.

For those who are primarily responsible for care, there are many recommendations (here’s an example, another, and one more one and last). Their main idea is that you can’t forget about yourself: you need to find time for sleep, hobbies, visits to doctors, physical activity, meetings with friends, and proper nutrition. Otherwise, life becomes unbearable, the caregiver can undermine their mental and physical health, and both people will suffer. However, without the support of others or without significant financial possibilities, taking care of oneself in such a situation is very difficult.

Another important piece of advice is to fight perfectionism (and therefore, endless guilt). Maria Huntman described a competent approach:

A person with dementia is a sick person, something unexpected always happens with them, and there are always unexpected problems. Not everything will be solved perfectly, so the feeling of guilt should simply be accepted. Accept and understand that if you are experiencing it, it means that you are already a good child.

In addition, it is not necessary to constantly cater to the patient’s wishes. It is useful to divide everything he wants into desires and needs. Desires can be whimsical, but needs are quite specific: food, sleep, walks, safety. If the conflict arises between the need to earn a living and the mother’s desire for you to stay home, the former is more important.

And of course, information helps prevent a lot of problems in care. “If you don’t know anything about dementia, taking care of a person can turn into hell,” said Alexander Shchetkina, president of the Alcrus foundation. Thanks to information, you can reduce the risk of a person wandering off, getting bedsores, fiercely resisting showering, displaying aggression, or wandering around the apartment at night. And if such situations arise, information helps to cope with them in the least stressful way.

In English information available: for example, on the websites of communities of relatives, patients and researchers in the United States, Great Britain, Canada or on the website of the British National Health Service. Some questions (such as what activities to do with a loved one, which diapers work well) can be discussed with others who are in the same position.

What to do if a person with dementia has episodes of aggression?

Aggression can occur for various reasons, and it is important to first understand what the issue is in order to solve the problem. The problem may lie in pain, discomfort caused by an infection (such as urinary tract infections), unwanted reactions to medication, disorientation due to poor vision or hearing, terror due to a stranger being in the apartment and trying to undress the person (which could be a daughter preparing her mother for sleep). It is always a good idea to consult with a doctor about aggression.

But to at least calm a person down if the reason cannot be understood or quickly fixed, you can:

• • Listen to the person and respond calmly, make it clear that you understand how they feel (arguing is not worth it – the further you go, the less sense there is in it).
  • Suggest switching to another activity;
  • Turn on calm music;
  • Suggest taking a walk;
  • Free the room from noise, disorder or excess people;
  • Offer a person to do or eat what they love.
  • Give the opportunity to make decisions to the maximum extent possible;
  • Maintain predictability and routine (in eating and bathing habits);
  • Leave time in the schedule for a peaceful pastime.
  • Put on visible places items that a person loves and family photographs.

To avoid responding with aggression when you really want to, and therefore not fueling another person’s aggression, you can leave the room for a while.

Medicines that combat aggressive behavior are only used in extreme cases, temporarily and as prescribed by a doctor.

Is it better to cope at home or send a person to a special institution?

There is no one correct answer here, and the solution will be difficult in any case. Even one family may find themselves in different circumstances at different times. But the main thing is if you can’t cope at home, if you can’t satisfy a person’s basic needs (food, hygiene, safety, treatment), or you can only do it with great difficulty, then a good special place where professionals take care of people with dementia will be better for your loved one. And that place cannot be a hospital – you need to choose a social organization (such as a nursing home).

When choosing a suitable organization, consider a few more points:

• • You should have good impressions after visiting this organization (they should let you in, and you should see other residents of this place), and it’s good if you make several visits at different times of the day, including at least one unplanned visit. It’s even better if you go with someone (a friend, relative) so you can compare your impressions later.
  • Pay attention to how the residents of this place spend their free time – whether there is somewhere to walk, whether there are common tables where you can, for example, play and socialize.
  • Ask about how interaction with family is arranged – whether it is possible to come to visit at a convenient time, to help with eating or taking a shower, to communicate with staff over the phone.
  • Clarify what medical assistance is available.
  • Find out how fire safety is ensured and what action plan exists in case of a fire.

If you are choosing a caregiver specialist instead of a nursing home, pay attention to:

• • Reviews (you can communicate with other families where this person worked);
  • Experience working with people with dementia.

How to help a person who is caring for a loved one with dementia?

A family gathering is necessary in order to comprehend this. Depending on the results, a determination will be made regarding:

• • Who can be with a person who has dementia most of the time;
  • Who might replace the caregiver;
  • Who will be searching for information and dealing with various bureaucratic and routine tasks like paying for electricity and telephone.
  • Who will just listen and support without saying “why do you take offense at your grandfather – it’s dementia.
  • Who will communicate with doctors and nurses because such conversations come easily to him;
  • Who will be giving money or buying necessary items, including food, and maybe even ordering delivery.
  • Who is good at minor repairs and will come when needed to fix the leaking faucet.

Is it possible to live with dementia alone, without constant assistance?

At the initial stage, it may be possible, but later on assistance will be needed, and the further on, the more help will be required. The American National Institute on Aging and the British National Health Service advise:

• Think well about what awaits you and prepare (see the answer to the question “How to prepare if you have a high risk of developing dementia?”).
• Organize days and weeks uniformly;
• Write down tasks or scheduled meetings in a wall calendar or notebook;
• Place the keys in a visible and predictable location;
• Hang up the clock that also shows the date and day of the week;
• Compile a list of emergency phone numbers and keep them near the landline phone or somewhere visible.
• Set up automatic debiting of money for phone and utility bills or ask close ones to pay for these services;
• Ordering delivery of groceries from stores (in some cases, food can also be brought by a social worker – this needs to be found out at the social welfare agency, which may have different names in different regions).
• Use a pillbox with days of the week and, optionally, an audio reminder (or set such reminders on your phone).
• Free your home from unnecessary things: furniture items, souvenirs, clothing (this will add more space and make the home safer).
• Remove carpets and wires that you can trip over;
• Install an automatic shut-off switch for the stove.
• Install temperature limiters on mixers or set the maximum temperature on the water heater (it should not exceed 50°C).
• Place an anti-slip mat in the bathtub or shower.
• Wear a bracelet, pendant, badge or sticker on your clothes that will allow strangers to contact your loved ones if you get lost or need help (experts do not recommend indicating your address on such carriers so that unscrupulous people do not take advantage of your situation and do not rob your home).
• Install a smoke detector and a carbon monoxide detector (the latter is needed if you have a gas stove, fireplace, or gas water heater, meaning you burn some fuel at home).
• Think about buying a smart speaker that can remind you to take medication and make calls to whom it’s needed.
• Think about buying a panic button (in a phone, as a bracelet or pendant) and a fall sensor.