What is dementia?

Alzheimer’s disease is the most common form of dementia. It causes a gradual decline in brain functioning, usually starting with memory loss.
Two problems are happening in the brain of someone with Alzheimer’s disease – plaques and tangles in and around the brain cells. The plaques are abnormal clumps of a protein called beta amyloid. These clumps create plaques on the brain cells. A bit like plaque on your teeth causing tooth decay, plaque built up around brain cells causes them to not work properly. The protein components of plaques seem to do more damage than the plaques themselves. The tangles are bundles of twisted protein called tau. If a brain cell has tangled bits in it, it’s not going to work properly.

In Alzheimer’s disease, the brain cells that have these plaques and tangles can no longer communicate with the other cells properly and eventually they die. These plaques and tangles tend to build up around the part of the brain that helps us store and remember new memories. Over time, they spread to other parts of the brain, creating problems for lots of different brain parts.

Common symptoms of Alzheimer’s disease include:

• Frequent memory loss, especially of things that happened recently
• Being vague in conversation
• Being less able to plan, think logically and solve problems
• Trouble finding the right word in conversation and understanding when other people speak
• Loss of motivation
• Being more emotional and having difficulty calming down
• Trouble with following instructions
• Drop in social skills

Doctors and scientists are trying really hard to figure out why some people get Alzheimer’s’ disease and some don’t. Unfortunately, they don’t have the answers yet. In very few cases, genes are involved, but in most cases, it seems to be some other, unknown cause.

Frontotemporal dementia (FTD) is the name given to a certain type of dementia that damages the front and side lobes of the brain. The front of the brain is where we control our mood, social skills and behaviour, attention span, self-control and our ability to plan ahead. Damage to this area can cause changes to personality, emotion and behaviour.
The sides of the brain, known as the Temporal Lobes help us to understand what we hear and see. Damage to these areas can lead to difficulty to recognising objects, understanding what people are saying and speaking fluently.

Because Alzheimer’s disease is the most common form of dementia, and it causes memory loss, lots of people think that all dementias cause memory loss. But many people with FTD will have no major problems with their memory initially, but have big changes in their personality, behaviour or language first.

Common symptoms of FTD include:

• Loss of social skills, talking to strangers, saying things that someone normally wouldn’t
• Appearing selfish and being unable to think about how others are feeling
• Being really easily distracted and impulsive
• Embarrassing behaviour
• Difficulty in understanding what people are saying
• Having trouble coping with strong emotions
• Changes to eating habits, craving sweet foods, overeating or craving strange foods
• Becoming obsessive
• Difficulty expressing love and warm feelings to people
• Difficulty coping with busy places or new situations

FTD is caused by a brain disease. People with FTD have lots of different changes in their brain cells. These changes appear to be caused by the build-up of two types of protein which get stuck in the brain cells. When these proteins build up in the brain cells, damage occurs and the brain cells die. While it starts in the front and sides of the brain, over time, the proteins spread to other parts of the brain too and unfortunately, this causes irreversible damage over a number of years.

FTD seems to affect people in the 40s, 50s and 60s more than the elderly. Doctors and scientists are trying really hard to figure out why some people get FTD and some don’t. Unfortunately, they don’t have the answers yet. In very few cases, genetics is involved, but in most cases, it seems to be some other, unknown cause.

Because younger people tend to get FTD, and experience changes in mood and behaviour, there is often quite a delay in the correct diagnosis. People with FTD often see several doctors, including psychiatrists and neurologists, before the correct diagnosis is made. These doctors are just not thinking dementia!

Because there is no cure for FTD, the best thing that families can do to help is to know as much as possible about FTD and why the person is behaving as they are, and help them cope. When you get to know why someone is behaving like they are, you can start to develop ways to work around problems rather than trying to change the behaviour. The person can't help it.

Vascular dementia is a type of dementia that is related to problems with blood flow to the brain. In scientific terms, ‘vascular’ means ‘blood vessels’. When blood flow to the brain is reduced, it damages brain cells. Because different parts of the brain are responsible for different things, the location and size of brain cell damage determines which brain functions are affected. This means that people with vascular dementia can have a wide variety of symptoms, but it often includes memory problems. Vascular dementia often exists along with Alzheimer’s disease - then we call it “mixed dementia”. Sometimes the vascular changes are not the main problem - Alzheimer’s disease is.
Lots of people say that symptoms of vascular dementia can be the same for a period of time and then suddenly get worse, almost overnight. Then it will stabilise again for a while. A bit like a set of stairs, it’s flat for a while, then drops, and then flat again.

The most common symptoms of vascular dementia are:

• Difficulties in problem solving
• Poor judgement
• Problems with memory
• Difficulties with reasoning
• Difficulties with paying attention

Anyone can be affected by vascular dementia, but the risk increases as we get older. This is because blood vessels in the brain are more likely to become damaged the older you are. Some factors increase your risk such as:

• High blood pressure
• Diabetes
• Being obese
• Smoking
• Heart problems
• Bad diet
• Not enough exercise
   

There is no treatment for vascular dementia, but getting help with other health issues can sometimes slow the rate at which the dementia gets worse. Loved ones and carers can help the person with vascular dementia to cope with their symptoms by learning about it and understanding why the symptoms are happening.

In 1912, German scientists Alois Alzheimer and Friedrich Lewy were studying brain tissue. As you might have already guessed, Alois Alzheimer was a key scientist involved in the discovery of Alzheimer’s disease. Friedrich Lewy identified brains that had an abnormal build-up of a protein called ‘alphasynuclein’. He discovered that this protein built up in parts of the brain that control the movement of our body, our thoughts and our behaviour. Scientists back then often named their discoveries after themselves, and Friedrich Lewy did just that. He named the clusters of built up alpha synuclein ‘Lewy bodies’. (Alzheimer was more modest- someone else named the disease he first described after him).

People develop ‘Lewy body disease’ when they have an abnormal build-up of Lewy bodies in the brain. If the first symptoms of Lewy body disease that people develop are changes to their thinking or behaviour, they will usually be diagnosed with ‘dementia with Lewy bodies’ or DLB. If the first symptoms are related to movement of the body, there are often diagnosed with Parkinson’s disease (yep, named after James Parkinson, but he was also a modest chap!)

Like other types of dementia, DLB is a progressive condition, which means symptoms get worse over time. The most common symptoms of DLB include:

• Difficulty with thinking clearly and logically
• Having problems with understanding reasons for things
• Confusion and a ‘foggy’ head
• Stiff arms or legs, or shakiness (similar to Parkinson’s disease)
• Visual hallucinations (seeing things that aren’t really there - for example, small creatures)
• Acting out dreams while still asleep (if they sleep with someone, this can be pretty bad news for them!)
• Memory loss
• Being off balance and even falling over frequently
• Difficulty in recognising things or people

Getting an accurate diagnosis of DLB is difficult. As you’ve probably already worked out, it’s quite a complicated disease, even for doctors. This is because DLB can look like lots of different conditions, including Parkinson’s and Alzheimer’s diseases. Sometimes this means that a person will have symptoms for a long time before doctors are able to explain what is going on.

Sadly, like other types of dementia, there is no cure. And over time, the symptoms do get worse. There are some medications for Parkinson’s disease, and some people with DLB will be able to take these to help them with the movement symptoms. But for all of the other symptoms, there is very little that doctors can do to help. Loved ones and carers can try to help the person cope with their symptoms as much as possible, by learning about DLB and understanding why it is that some symptoms are happening.

Posterior Cortical Atrophy (PCA) is a type of dementia that affects the back (posterior) of the brain. Brain tissue in the outer layer (cortical) begins to shrink (atrophy) as brain cells are lost. The brain cells are lost because of the same problems in the brain that occur in Alzheimer’s disease.

The changes in the brain that occur are due to plaques and tangles of protein in and around the brain cells. The protein that builds up in the brain is called beta amyloid. These clumps create plaques on the brain cells. A bit like plaque on your teeth causing tooth decay, plaque built up around brain cells causes them to not work properly. The tangles are bundles of twisted protein called tau. In PCA, the brain cells that have these plaques and tangles can no longer communicate with the nerve cells properly and so they die. These plaques and tangles tend to build up around the part of the brain that helps us recognise what our eyes are seeing. Over time, they spread to other parts of the brain, impacting on lots of different brain functions.

Common symptoms of PCA include:

• Recognising objects and faces
• Understanding where things are in relation to other things (for example, not being able to tell if something is within reach or far away)
• Difficulties with handwriting and spelling
• Remembering the shape of letters or numbers
• Problems dealing with money and small change
• Thinking that things are moving when they are not (stripes can look like rolling waves)
• Struggling to see in bright light or shiny surfaces (sun through a window, a shiny bathroom or kitchen can look just like a bright white light)

Sadly, like other types of dementia, there is no cure. And over time, the symptoms do get worse. As PCA progresses, remembering words, day-to-day memory and looking after yourself becomes harder. In the later stages of the disease, some people develop jerky movements in their arms and legs. The damage to the brain is irreversible. Sometimes, people might be given medication that is given to people with Alzheimer’s disease, as it might help them to think clearly for a little bit longer.

People with PCA need lots of help from family and friends, particularly with their vision.

At this time, people have usually been diagnosed within the past year or two, but symptoms may have been present for a few years longer than that. They are experiencing symptoms that might come and go at times. Lots of people in this stage are capable of looking after themselves with only minimal support. They may still be driving, but their doctor might be requesting a review of their driving abilities. Some people experience grief at this stage, as they come to terms with their own diagnosis. They might appear a little more withdrawn than usual. Conversely, some people don’t believe that anything is wrong with them and don’t want to alter their lifestyle. This stage is usually characterised by people seeming to become confused more easily and some increased frustration in the person.

During the moderate stage of dementia, sometimes referred to as ‘the mid stage’ or the second stage, people tend to experience worsened symptoms and possibly some new ones. People are generally no longer able to drive and may not be able to spend time on their own, for safety reasons. Sometimes, people can begin to need help with personal care, such as needing help to run the shower or to use the toilet. However sometimes symptoms that were occurring during the earlier stage can go away. For example, somebody who becomes very hyperactive in the earlier stages of dementia might quieten down and prefer to rest more, as time goes on. During the moderate stage, people tend to have an increasing need for care and support from those around them. Families might also begin to use professional help as well. That might mean a professional carer is coming into the home and spending time with the person with dementia, either socially, or to help with certain tasks. At this time, people might also begin to have short stays at a respite facility, either because family members aren’t available to look after them, or because people need to take a short break.

At this third and most severe stage, many people who have dementia have moved into residential care facilities as they require nursing care to be available 24 hours a day. During this time, some people will lose or have lost their ability to speak. Some people may rely on a wheelchair as they are not able to walk anymore. They might call out and shout a lot, especially at night. Some people might experience hallucinations and some may have difficulty in recognising faces of people they love. Some people have abilities that remain, even in the late stage. For example, although they may have lots of severe symptoms, a person might be able to smile and laugh when they hear their favourite music, or still experience the feeling of being loved as a positive thing, even if they aren’t able to tell you.

Sadly, dementia is a terminal illness. Given there is no cure yet, a dementia diagnosis will mean that a person’s life expectancy is shortened. Nobody can say for sure how long a person has got to live, when they are first diagnosed. Even the ‘average’ is very broad. Doctors will often say that a person can live with dementia for up to 20 years after they are diagnosed. Sometimes is it a much shorter time than this - maybe just a few years. When a person with dementia is dying, they may need to be moved to a place where they can receive special care, with lots of help from nurses and carers, so that they can be made to be as comfortable as possible. There is often support for family members provided at these places too.