Dementia in my family


What is dementia?

Dementia isn’t an actual illness, it is a word that refers to a set of symptoms that are caused by a variety of illnesses such as Alzheimer’s disease. Dementia symptoms often include memory loss, personality changes and confusion. Sadly, dementia causes an ongoing decline in brain functioning and therefore, a person’s ability to live life how they once did. For example, dementia isn’t always just about forgetting where things are. We all have times when we forget where we put our phone. But somebody with dementia might forget what a phone is used for.

For a long time, the person might look healthy on the outside, but on the inside, their brain is not working properly. Dementia affects the brain, that’s why it affects someone’s personality, behaviour and how they do things. It’s pretty easy to assume changes in someone’s personality are intentional, or just a bad mood that is directed at you for no reason. But as hard as it can be to get your head around, personality, mood and social skills are all controlled by brain function. If your brain has a disease, these things are going to be impacted. It’s not intentional. I’m sure most people who become really difficult to deal with when they have dementia would be pretty horrified to know that they were hurting their loved ones, if they could understand.

Is dementia a mental illness?

No, it is a disease of the brain that causes brain cells to die. Our brain is our control centre and it controls everything we say, do and think. Everything from breathing to keep us alive, right through to knowing how to ‘bite your tongue’ when you don’t want to offend someone, is controlled by the brain. When the brain is sick, we have problems with all of our actions, including speaking, remembering, making decisions, learning new skills and understanding information.

Is dementia something that ALL old people get?

No. We all have brain fades from time to time, especially when we get stressed. Anyone can forget where they have put their phone. A person with dementia may forget what the phone is used for.

As people get older, the chances of developing dementia are higher. However this is the same for many illnesses and dementia is not a ‘normal part of aging’. Not all older people will develop dementia, and some younger people will develop it too. Although this is not as common, some people develop dementia in their 30s, 40s and 50s. ‘Younger onset dementia’ refers to dementia that is diagnosed in a person before they turn 65 years old.

There is not just one test. Dementia is difficult to diagnose and the younger somebody is, the longer it can take to detect and diagnose. Lots of different tests must be done before a doctor will diagnose dementia. There are some good reasons for this: there are some illnesses that might seem like dementia, but are treatable. It’s important to rule out these illnesses before diagnosing dementia, because doctors don’t want to tell someone they have an incurable condition unless they are sure.

Because dementia is quite difficult to diagnose, this often means families are living with the impact of dementia long before they even know what they are dealing with. For some families, this time before a diagnosis is really stressful. Once a diagnosis has been made, a doctor might be able to say that a person has a particular ‘type’ of dementia.

Sadly, at the moment there is no treatment that can cure dementia. There are some medications that may help a person with dementia to think more clearly, but they don’t work for everyone and they do not cure the person. We hope that through the hard work of doctors and other researchers there will be a cure soon – or at least something to slow dementia down.

Sadly, dementia is really common, particularly in people over the age of 70. There are over 400,000 people living with dementia in Australia right now. That means, there would probably be over a million teenagers in Australia who know someone who has dementia. You might feel like you’re the only person who is dealing with it in your family, but you are not alone.

On this map, each pin has been dropped by a young person who is dealing with dementia in their family. Click on the map to drop your pin, and let others know that they too, are not alone.

You might not know this, but there are over 400 different types of dementia! Some are more common than others. A few things will influence how different types of dementia affect people, but it is important to remember that everybody is unique and therefore, even two people with the same type of dementia might have different symptoms.

Here is a brief breakdown of some of the most common types of dementia.

  • Alzheimer’s Disease
    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)
    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
    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.

  • Dementia with Lewy Bodies (DLB)
    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)
    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.

The rate at which any type of dementia gets worse varies from person to person. However, the symptoms will get worse as the disease affects different parts of the brain, and it does eventually lead to people being disabled in all areas of their body.

People working in the field talk about ‘stages’ of dementia. In reality, it’s not that clear cut. There are lots of difference between people and there can be good days and bad days in the way somebody is functioning. Dementia can look a bit different from day to day and even change depending on the environment. For example, a person might be able to look after themselves quite well at home, but when they go to a busy shopping centre, they might suddenly find it difficult to find words, remember where they are, and can become agitated and overwhelmed.

Although there is no particular point at which someone enters a ‘stage’ of dementia, commonly people talk about three main stages:

  • Early
    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.
  • Moderate
    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.
  • Late
    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.
  • Then what?
    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.