Frequently Asked Questions

“Dementia” is word that describes a whole range of symptoms. Those symptoms are caused by a large number of underlying diseases, the commonest of which is Alzheimer’s disease. The second most common disease is vascular disease. Often people have a mixture of the two.

In vascular dementia the symptoms are caused by reduced blood supply to the brain. Like all dementia it tends to get worse over time, but it can be slowed down by things that improve vascular health, that is the health of your blood vessels. That would include keeping optimum blood pressure and managing diabetes as well as possible. In vascular dementia brain cells are damaged and eventually killed for lack of a good blood supply. Blood vessels can be narrowed and blocked, for example the very small vessels in the brain. It can be a stroke, when the supply is suddenly cut off. Otherwise, it can be lots of mini strokes (called TIA or transient ischaemic attacks) that cause small but widespread damage to the brain.

In Alzheimer’s dementia there is a build-up of deposits in the brain which affects individual brain cells. The levels fall of the chemicals that normally transmit messages from cell to cell across the brain. One of them, called acetylcholine, is particularly low. There are some medicines such as donepezil that can improve the brain function by acting on this deficit. The effect is not dramatic, but because it is more effective in the earlier stages it is advantageous to get a diagnosis as early as possible. It’s not a cure, but it can help the person to live as well as possible for as long as possible.

Though it is not a normal part of ageing the number of people affected doubles every five years after the age of 65. After the age of 85 about one third of people have Alzheimer’s. But that means two thirds don’t have it at all.

Find out more in my book Dementia: The One-Stop Guide

Not exactly. Alzheimer's causes dementia, but not all dementia is Alzheimer’s. Dementia is the word that is used to describe a set of symptoms that include language and thinking problems, but also some motor problems like balance, and sensory problems like not being able to see things clearly. More than one disease can cause the symptoms of dementia. The best known and commonest disease which causes dementia is Alzheimer’s disease, but there are many others. It’s a complex issue and I’ve tried in blogs and books to pull together some of the most common solutions to the most common problems.

Find out more in my book Dementia: The One-Stop Guide

Alzheimer’s disease is the most common disease which causes symptoms of dementia. Other diseases which cause dementia are: dementia with Lewy bodies, vascular dementia, frontotemporal dementia, along with many others.

You can find out more on the websites of a large number of charities and in my book Dementia: the One -Stop Guide.

What causes dementia is one of a number of diseases, the commonest of which is Alzheimer’s.

No one really knows exactly what causes Alzheimer’s. It is not caused by old age but the older you are, the more likely you are to be affected. There is probably a mix of genetic factors, lifestyle factors and some effects of ageing. The brain is very complex, and cases of Alzheimer’s disease can be very different so that makes it hard for scientists to work out a specific cause. There appears to be a relationship to shrinkage of parts of the brain, inflammation, and the failure of metabolism of cells which can happen with any part of the ageing body. Ageing is very visible, for example seeing the skin on a person’s face, or the reduction in their muscle mass. The signs of normal brain ageing include the slowing that is seen in Mild Cognitive Impairment. Alzheimer’s is not part of normal ageing, but a degenerative disease.

Another common cause of dementia is vascular disease. The cause of vascular dementia is the same as all vascular disease like strokes, heart attacks, and other blood clot and bleeding problems. Reducing the risk of that comes from taking care of blood pressure and diabetes, and by lifestyle factors such as exercise, diet, avoiding smoking and being careful with alcohol.

There are about 50 million people in the world with dementia, and nearly 10 million new cases every year. Anyone over the age of 60 has a 5% chance of having dementia, and the risk doubles every five years after that age. How fast these numbers increase can be affected by some risk reduction responses at a personal and a national level.

People who are more likely to get the diseases that cause dementia are older people and people who smoke, use a lot of alcohol, have poor blood sugar control, have uncontrolled high blood pressure and don’t get enough exercise. Other risk factors include social isolation and not having enough brain activity. So, for example, people who have many more years of formal education or other brain work such as being bilingual seem to have some protection. There are genetic factors but, in most cases, these are not strong.

More women are affected than men. The ratio is about two women for each man. The brain cells that are affected die faster in women than men. There are theories about this related to the action of oestrogen in the female body, but this has not led to any medical treatments yet.

The WHO has produced a summary of areas of action to reduce risk

This includes:

- Physical exercise
- Tobacco cessation
- Healthy diet
- Alcohol care
- Social activity
- Mental exercise
- Weight management
- Management of hypertension, diabetes, depression, cholesterol
- Management of hearing loss

In the early stage the signs include forgetfulness, losing track of time, and becoming lost in familiar places. Previous familiar skills such as driving and managing money will start to be more challenging.

As dementia progresses to the middle stage, the person may become lost even at home, and become forgetful of recent events and people’s names. Communication difficulties increase and the person may need help with personal care. There may be behaviour changes such as wandering and asking the same questions over and over.

In the later stages, the person becomes inactive and eventually totally dependent. The physical signs are more prominent including problems with walking. Friends and relatives may not be recognised and the increased stress felt by the person may give rise to behaviour problems, such as aggression because they are afraid and do not understand where they are or what is happening.

The signs of dementia become worse over time, but they can fluctuate ie become temporarily much worse, if the person has an illness such as a chest or urine infection. Signs become worse when the person is tired or stressed. Fatigue is significant because life is complicated and difficult for a person who is becoming less able to cope with ordinary living. The signs can become less in an environment that is familiar and well lit.

A quiet routine and minimal stress, good management of other medical conditions, good nutrition, exercise, activity and familiar company the symptoms may help to minimise symptoms. Design of the environment and the behaviour of those around the person can make a significant difference.

Forgetting is normal. Normal forgetting is more noticeable if the person is ill or stressed, tired or in an environment that makes it hard to concentrate. When you have normal forgetfulness, you can formulate a strategy to get round the problem. For example, if I forget what I should be doing today I can look at my diary or ask someone. If I realise that for some reason, for example being on holiday, I don’t even know what day it is, I can decide if that matters, and check on the radio or on my computer, or the newspaper. In dementia, it appears that the person has forgetfulness but lacks the capacity to work out what is going on.

Most people will have experienced the feeling of waking up in an unfamiliar place and not being sure where they are. After a moment of confusion, they look round the room and realise why they are waking here, eg in a hotel, at a friend’s house, in the hospital. Almost immediately they work out why they are not where they thought they should be. In dementia that sensation of not being where they thought they were, and not knowing what to do about it can persist and can be so alarming that it gives rise to extreme agitation and anxiety. It is normal to forget. The abnormality is radically increased forgetfulness, in addition to not being able to work out what is happening.

People are more likely to have dementia in later years, so in a family where everyone lives to be 100, about half of you may have dementia, but only because the frequency of dementia rises to 50% for everyone over the age of 95.

If your family has inherited vascular disease, like high blood pressure, and it’s not treated, you may be at greater risk of dementia in later life than other families. That’s not the same as “inheriting dementia” because you can influence it with lifestyle changes. Sadly some families have a form of dementia that passes down to children genetically and is different from dementia in old age. This happens before the age of 65 usually so it’s called early onset Alzheimer’s disease.

Only a few hundred families in the world have this genetic problem. Even in these families lifestyle changes can make a difference to the rate of the development of symptoms.

If you think someone you know has dementia, how you approach it with them is highly personal and depends how close you are. If they are in denial and don’t want to seek help it might be difficult to raise the issue. If not, you may discover that they are worried already and really want to talk to you about it. You can then support them in going to see the GP and doing the other things that are necessary at this time.

There are some ideas here about how to have the conversation if it is difficult. The more we all speak about it, the more awareness will be raised, and the easier it will become to steer people towards the help they need. If they are avoiding diagnosis because they fear loss of power, independence, even their driving license, it is possible to provide reassurance. People with dementia can be helped to remain independent and to live as well as possible for as long as possible, but diagnosis is the first step.

Find out more in my article or my book, Dementia: the One-Stop Guide

If you think you have dementia the first move should be to visit your GP. What happens there is described here, where Dr Vicky Fakhoury describes the stages of receiving a diagnosis from a GP.

Find out more from my book, Dementia: the One-Stop Guide.

Trying to work out whether a new idea makes a difference in dementia requires a little method.

Look at the claim. Who is making it? Some sources are more reputable than others eg an established research University centre findings versus a celebrity endorsement. Both interesting but one is more reliable.

Look at the punctuation. If the headline has scare quote inverted commas like “this” then it means they don’t have evidence and are not making a claim just making a third-party comment. That makes it more speculative. The headline “Grapes “Cure” Dementia” means that that the person writing is NOT convinced about grapes.

Look at the language. It the verb is “may”, “might” or “could” then it is highly speculative. I “could” lose weight if I only ate boiled eggs, but there are so many other problems that would arise, I’d never do it and I’d probably make myself very ill. So saying “Eggs could cure obesity” is true in a way but tells us nothing.

Look at the definitions. The reporter often says “cure dementia” when the research says “improve memory”. Memory loss is not the only problem in dementia and not the most severe. Something which is claimed to improve memory will not guarantee a cure for dementia.

Read more in my blog Headlines, Fake News and Dementia

Early onset dementia (or working age dementia) is the term used for dementia when it is presents before the age of 65 and is caused by one of those diseases mentioned here. Sometimes people get mixed up and call the early stages of dementia “early onset” when they mean “early stage”. Generally early onset dementia refers to people who have dementia in their sixties or earlier.

There are dementias of childhood but they are not usually described as early onset.

Working age dementia is rare. It is even more rare for it to occur when no one else in the family ever had it - you can find more information on working age dementia at youngdementia.uk.org If the worry about this is affecting your life you should talk to your GP.

When presenting I often ask my audience to put up their hand if they have appointed a “Power of Attorney” for themselves. Few hands go up. People look bemused for a minute. “Why would I need that when I’m still working?” they are asking themselves. “I’ve not got dementia yet.” This mirrors the reply from patients and clients. “Plenty of time for that later. I’ve not lost my marbles yet,” is a typical reaction. Yet this is the time when you should actively seek and set up a power of attorney, before you need it. You cannot set up a power of attorney if you lack capacity. If you lack capacity, it is too late for your family to seek a power of attorney to act in your best interests.

A power of attorney (or lasting power of attorney in England) is a legal document that lets you (the ‘donor’) appoint someone (who is then called the ‘attorney’) to help you make decisions on your behalf, or to support you to make decisions. You need this if, for some reason, you lack capacity to do it independently.

Your attorney doesn’t take over from the day you both sign. The power you are giving them only comes into play if something happens to reduce your capacity to decide for yourself. One common reason for this is ill health, such as a stroke, where communication becomes difficult. You may be unconscious from an accident, and those round you are asking each other what to do next. It is often used in dementia, when mental capacity has faded.

You can find out more information in my blog or you can find out more in the book Power of Attorney: the One-Stop Guide by Sandra McDonald.

Incontinence is something that often happens at end stages of life, but it is not automatic in dementia. Medication, depression, confusion, fear - of these things can make the person less efficient at caring for themselves. And all of these can be addressed.

Find out more in my article Dementia, Pee and Poo - and any further questions can be sent to me through the contact page.

Dementia can cause practical problems. For example, people sometimes get lost because they don’t recognize their street or their house any more. They might lose important objects like keys. It is hard if family and friends live far away.

Families sometimes feel that they can’t tell what is going on and because it is too far to travel, it might be safer for the person to move to a care home. This is a shame because sometimes the imagined problems are worse than the reality.

There is a really useful website Ask Sara which gives more information about what is available.

Some of the solutions to living with dementia are as simple as having a prominent clock, and nothing beats friends and family taking an interest, but it makes sense to use all the technical solutions around, to leave more time for having fun together.

For more information see my article.