Younger onset dementia
Key points
Younger onset dementia is the term used to describe any form of dementia diagnosed in someone under the age of 65.
Dementia can affect thinking, memory and behaviour. Brain function is affected enough to interfere with someone’s normal social or working life.
People often lead active and fulfilling lives for many years after their diagnosis.
Transcript
[Beginning of recorded material]
Doris: One less known fact about dementia is that people under the age of 65 can also get it. This is known as younger onset dementia.
There are over 23,000 people living with younger onset dementia, and some people as young as 35 have sadly been diagnosed. Of course, people who aren't retired will have very different issues to deal with. Working to pay off a mortgage and still caring for children at school, are just some of the differences.
For many of these people, it takes a longer time to get a diagnosis as doctors don't expect people of this age to develop dementia. For younger people and their families, a diagnosis of dementia can be an enormous shock. However, for some, they may be relieved as finally they have an answer. The important thing to remember is to get help early. The earlier the better. Don't wait until you're in trouble.
Prof. Henry: Younger onset dementia, by definition, is dementia, which has its first symptoms before the age of 65. We typically think of dementia as starting at an older age, and that's true, in the seventies, eighties, or nineties. But we've seen patients who develop dementia in their thirties or forties. These are usually associated with some inherited form of dementia, where there is a strong family history that goes through several generations.
There are special issues with younger onset dementia. People are still working, people are still driving, they often have children at home. It produces extra stresses on the family and on the children growing up. Services are largely geared for older people, and so, younger people find it hard to fit in to some of the day centres, or if they need to go into a nursing home, into the facilities that would house them. Support is really important for the person with dementia and for their family carer. Having family and friends come around, talk to them, understand what's going on, engage them in activities, is really helpful in reducing the stress and the burden.
[visual: Jenny and Noel sit together]
Jenny: Younger onset dementia has meant that Noel gave up work and I gave up work. I went part-time, then gave up work – so it's massively changed our lives and changed our financial situation, but also changed our understanding of ourselves as working people contributing to society.
[Sue]
Sue: I've had to take over all the financial payments of everything, which is okay. I don't mind that. I can do that but it's just because I can't discuss anything – there’s no one discuss things with so if we need to do something, I have to decide it all myself, and I'll sometimes go and say, "Oh, so what do you think about this?" Because he's younger, the younger onset group, he was still working when all this happened and had his own business, and it's been an absolute financial disaster. The whole year has been, apart from the illness, a financial absolute disaster that with the younger onset, they're still involved in business, whereas a lot of older people have retired and everything's under control.
[visual: Ros and John sit together]
John: And we went and saw the GP that Ros, in fact, knew professionally for 20 years. And we walked in there, he gave her the test of the 30 questions. He said, "Sorry but," we didn't know why he said “sorry”, he said, "I think you have dementia, probably the Alzheimer's type, and you'll need to stop nursing today." Now, that was a shock.
I found it quite difficult. It was always a joke amongst us as I'm seven years older than Ros, and so, I married a child bride, and I was ready for retirement and leave Ros to do all the work. That was the joke, but the reality was a bit more serious, and I found it quite difficult. So, it was probably three months after the diagnosis that we joined up with the course, with the early onset course, which was a day over six or eight weeks where we really addressed the issues. From my point of view, it was a real salvation.
[Title card: Dementia Australia logo]
[Title card: National Dementia Helpline 1800 100 500. For language assistance call 131 450.]
[Title card: Visit dementia.org.au]
[END of recorded material]
About younger onset dementia
Younger onset dementia is any form of dementia in people under the age of 65. It’s sometimes called “early-onset dementia”.
Dementia is a brain condition that can affect your thinking, mood, behaviour and movement. It can have many causes. You can have one or more types of dementia.
Dementia is more common in older people, but people in their sixties, fifties, forties and even thirties can develop it. In 2023 it is estimated there are more than 28,650 people living with younger onset dementia. This figure is projected to increase to more than 42,400 by 2058.
Because dementia is rarer in younger people, it can often go unnoticed. Noticing your signs and symptoms and talking to your doctor as soon as possible helps. The sooner you know, the more you can do.
If you’ve noticed early warning signs in you or someone close to you, talk to your doctor.
There is no medical difference between dementia and younger onset dementia. But if you’re younger, dementia can affect your life in different ways.
Transcript
[Beginning of recorded material]
[Bruce]
Bruce: Hi, my name's Bruce Webber, I'm from Murray Bridge. I got younger onset dementia, and I got it four and a half years ago.
[visual: Bruce looks at his plants]
Bruce: Sometimes, things get cloudy and foggy, and I forget things.
[visual: Bruce does some crafts]
Bruce: I have a lot of things that help me, like I've got this watch here which is a GPS tracker.
[Visual: Bruce walks his dog]
Bruce: I'm able to go out and do a lot more things, and if I'm in trouble, I just press a button and people could find me easy.
[Visual: Bruce shows his art work]
Bruce: I like to do arts and work with my hands, and that gives me a bit of peace and tranquil in my life, yeah.
[visual: Bruce plays the drums he made]
Bruce: I've made drums out PVC pipe. I've made metal drums out of Helium containers. I just generally like to make nothing into something. Yeah.
[Visual: Bruce gets help at a recycle centre]
Bruce: I do have people that help me from recycle centres. They get to know me and they'll say, "Oh, I think I got something for you", and then I make something out of it.
I have my own personal struggle some days, but my philosophy is never give up because, in the long run, you could just have a bad day and things might muck up, but tomorrow, you can make it better. Recycle it. That's what I'm saying. Just recycle it.
A little support makes a big difference.
[Title card: A little support makes a big difference. discrimination.dementia.org.au. An Australian Government Initiative]
[END of recorded material]
Conditions that lead to younger onset dementia
Find out more about the most common dementia-related conditions on our 'Types of dementia' page.
Transcript
[Beginning of recorded material]
[Title card: Dementia Australia]
[Title card: Young onset dementia]
Professor Velakoulis: Hi, I'm Dennis Velakoulis. I'm from Neuropsychiatry at The Royal Melbourne Hospital. I'm going to be talking about young onset dementia today, and this is part of a Dementia Australia expert webinar series. I am going to just start off with a brief discussion about what is dementia, what causes dementia, how it progresses, and then some more recent information about what might help from a treatment point of view.
Dementia is a condition which leads to ongoing changes to one or more areas of cognitive function. These areas include memory, attention, what's called visuospatial, or understanding where we are in space and our sense of direction, executive function, or our ability to know what to do, when to do it, when not to do it, and our ability to plan and organise things. And finally, language. There are multiple areas of cognitive function, and different types of dementias may affect any one of those areas at different times.
Many diseases cause young onset dementia. Alzheimer's disease is probably the commonest in the young onset dementia space, but frontotemporal dementia is probably the second commonest. And I understand there's been another talk on frontotemporal dementia by Professor Amy Brodtmann as well. Vascular and Lewy Body dementias are the third and fourth-commonest causes of dementia in younger people, and then there are a number of other conditions including genetic conditions like Huntington's disease, which cause dementia in young people under the age of 65. There are many other rare causes of dementia, many of them affecting a small number of people, but still having the same impact on patients' families that Alzheimer's disease or frontotemporal dementia will have.
So, this is just a brief overview of what causes dementia. It's not necessarily applicable to all types of dementia, but it's something that I've used to explain to people why dementia happens in brain cells. And our brain cells are like little factories. They're always making and breaking down substances called protein. So proteins are essential for brain cells and every other cell in our body to work, and that's how all of our cells work. They work through the use of proteins. Most dementias are caused by a build-up of abnormal proteins in the brain cell.
This is a cartoon of a brain cell. You can see the little orange squares. They're the amino acids, the little squares. All these little amino acids accumulate into proteins, which then go off and do their business in the cell, and then the cell breaks down the proteins and we start the cycle again. So it's a little factory that's making proteins. When something goes wrong, so for example, if the cell isn't able to break down the proteins anymore, then all those bigger squares start to accumulate and clump together in the brain cell. If there are too many of those little squares, they clump into what are called plaques, and those clumps then just take over the entire brain cell, and unfortunately, the brain cell dies. This is a very just a very general description of what happens in brain cells when there's a build-up of proteins.
So, why do proteins build up? Well, unfortunately, like any piece of machinery, our brain cells are subject to wear and tear. And that wear and tear can lead to abnormalities in this production of and breakdown of proteins, or genetic mutations can lead to a breakdown in this production and breakdown.
Different dementias have different proteins. In Alzheimer's disease, for example, it's amyloid that's the abnormal protein that builds up. In frontotemporal dementia, it's either a protein called tau or TDP-43. In Parkinson's disease and Lewy body dementia, it's a protein called synuclein. In Huntington's disease, it's a protein called Huntingtin. And in a very rare disorder called Creutzfeldt-Jakob disease, it's a protein called the prion protein. These proteins vary across the different types of dementia, so each dementia has its own protein. I might just add that vascular dementia is an exception to this protein rule. In vascular dementia, the abnormality that causes brain cells to die is blockage or bleeding in arteries of the brain.
Now, why do different types of dementia cause different types of problems? Alzheimer's disease, for example, begins with memory problems. Now, not all Alzheimer's disease begins with memory problems, but in general, it's the memory, the short-term memory, that's the first thing that's affected. Why is that? Well, it's because the amyloid, the abnormal protein, first starts to build up in areas that help or that are responsible for the memory, like the hippocampus, or the temporal lobes, or the parietal lobes of the brain. So, amyloid starts building up in those areas first in Alzheimer's disease, and leads to the early symptoms of memory problems. We don't really know why amyloid starts building up in those areas and not in other areas of the brain first.
In frontotemporal dementia, the abnormal proteins, the tau and the TDP, start building up in the frontal areas of the brain, so that leads to changes in personality, or behaviour, or psychiatric changes. Again, we really don't know why that happens – why do these proteins start building up in these parts of the brain first? We don't know. In Parkinson's disease, the synuclein begins to build up in a part of the brain called the brainstem or the back of the brain; but in Lewy body dementia, it often will start to build up in other areas of the brain like the hippocampus and lead to memory problems. Huntington's disease, the abnormal protein there starts to build up in movement areas of the brain and in the frontal lobes, which is why people will often develop movement problems first, and then behaviour and personality changes. So, different dementias have different proteins, and often, those proteins will often start to build up in different areas of the brain, and therefore, that's why different dementias will often begin with different types of symptoms early on.
Now, some conditions we know will occur together. So, Alzheimer's disease and Parkinson's disease will often occur together, as will Alzheimer's disease and vascular dementia. Frontotemporal dementia will sometimes occur together with a condition called motor neurone disease. And Parkinson's disease will, as I've already mentioned, often occur together with a condition called Lewy body dementia. People with Parkinson's disease may ultimately develop a dementia. Not all of them, but some, and that dementia is usually associated with what's called Lewy body dementia.
I'm often asked by people when we are talking about brain changes and different types of dementia, what do you mean when you talk about brain shrinkage on an MRI scan? In terms of making a diagnosis of any dementia, we will usually do our own tests, our questions, our memory tests, and then we'll go on and do MRI scans or PET scans. We do rely quite a lot on CAT scans and MRI scans as the first scans we do in people, and what we are looking for there is brain shrinkage, or what's called atrophy in the brain. So, because I'm often asked, I thought it's worthwhile just letting people know what we're actually referring to. Many people will often want to look at their brain scans and understand what it means.
So this is a brain scan, which is done in a certain slice if you like. This slice is, if you like, we are looking at the person who's standing right in front of us. Their eyes and their noses are somewhere a little bit ahead of this scan, but we're taking slices through from the front to the back, and we've stopped about halfway now. So, if we had another slice, if this was a few slices backwards, we might see the person's ears here, for example. This is the top of their head and this is the bottom. What we're seeing here is the grey and the white matter of the brain. This is the grey on the outside, this is the white matter on the inside. These are the normal fluid-filled areas of the brain called the ventricles. These are normal, these black areas.
What we're seeing here on the left is pretty much a normal brain with normal white and grey matter. This is the hippocampus in here on the left. The area that is not normal on this scan and where there is shrinkage is on the right-hand side of the brain, and it's this area here, this is the hippocampus, and you can see this is shrunken compared to the other side. You can see there's more fluid in this area compared to the other side, and you can also see that these areas here are much smaller and shrunken compared to the equivalent areas on the other side. When we're referring to brain shrinkage, these are the sort of changes that we are referring to.
This is another example, again, of a scan taken in the same way where you can see that, if we just go back to the other scan, you can see the fluid filled areas of the brain here, these are of normal size. In this area, they're much bigger because the brain is much more shrunken in a general sort of way, so we can see the hippocampus shrunken here, like the previous scan, like that; but you can see it's happening on both sides, and that these areas of the brain which is equivalent to this area, are much, much bigger. There are more fluid-filled areas than there should be. This brain scan shows what's called generalised atrophy or generalised shrinking across all areas of the brain.
The other question that will often arise when we see people with a diagnosis of vascular dementia, and we talk about mini strokes is, well, what are we actually talking about? What are we actually looking at on a scan? Most of us will be familiar with a stroke, which causes either weakness on one side of the body, or problems with your speech, or problems with your vision. There are, on occasion, strokes that don't affect the eye or the movement parts of the brain, but affect the white matter of the brain. And this is the part of the brain, the white matter in here, where all the wiring of the brain occurs, so the wiring of the brain connects different brain cells from one region to another. That's what the white matter is doing and what it's for.
When there are lots of these what are called “mini strokes”, if you like, these are strokes, or these are changes affecting the white matter of the brain, where there's not enough blood going to these parts of the brain because of blockage in the blood arteries, and it leads to very slow, and often, silent changes in the brain. So, we don't necessarily see paralysis or visual problems, what we see are very slow changes in cognition, and thinking, and memory. So, a typical story when we see a patient who has a brain scan looking like this is of personality changes, behaviour changes, maybe changes in judgement or insight, and also, some difficulties with memory. But it's usually a lot more the personality, behaviour changes that occur first, rather than the memory changes. This is a scan where there's been quite a lot of these mini strokes, if you like, so many in fact, that they've all, many of them have joined up and it looks like one large area of what's called ischemic change – ischemia means lack of blood supply to the brain.
So, a lot of what I've already spoken about refers to all types of dementia, not just people with younger onset dementia. Younger onset dementia makes up about 10% of all cases of dementia. The average age of onset, if we look at everyone who's under 65, the people we see here at The Royal Melbourne, is about 51 to 52. This is pretty typical for other clinical services that see people with young onset dementia. Now, that's an average age. So, because we're seeing people under 65, the maximum obviously is 65, but the minimum can be in some cases even teenagers who are very young can develop very, very rare types of dementias, often what are called metabolic dementias, which cause brain changes, particularly to white matter, for example.
What's important here is that the younger the onset of a dementia, the more likely it is that it's going to be diagnosed as a psychiatric condition. So, it's understandable that in those very, very rare cases where someone is in their 20s, and is developing a type of dementia, let's say a white matter type of dementia, that they will usually have problems with personality, behaviour, or psychiatric changes. When they see their local doctor or even a psychiatrist, people won't necessarily think of a dementia as the main reason for this presentation, it'll be depression, or anxiety, or in some cases, schizophrenia or bipolar disorder. That's understandable because 99% of young people who present who have those issues will have a psychiatric problem, not a dementia. We do know from the literature and evidence that the younger the dementia, the more likely people will present with a psychiatric condition, often, a psychosis, and be diagnosed with schizophrenia or bipolar disorder.
Because younger onset dementia is so rare and not something that most general practitioners are used to seeing, the diagnosis will be delayed. And it's not uncommon for us to hear from someone that it was hard to convince the doctor that anything was wrong. We were told that it was age, or stress, or maybe alcohol related. We've done some work in our own unit, and the people coming to see us had seen, when we did this study, an average of five specialists before actually being referred to a specialist service, and that the waiting time was around three or four years. This is consistent with what other people around the world have identified in different studies as well, that it takes three to four years for a diagnosis, which is, obviously, three to four years too long.
So why is younger onset dementia important to diagnose early? There is a significant impact – three or four years of behaviour, personality, psychiatric, and cognitive problems have a significant effect on patients, families, carers. It's not uncommon for us to see people whose work has broken down, marriages have broken down, relationships have broken down, because the diagnosis has been attributed to alcohol, or substance use, or depression, or midlife crisis. So, the earlier we can make the diagnosis, the earlier people understand what's going on, and it could well avert some of these significant impacts on families and carers.
There are genetic implications. For example, in certain cases of Alzheimer's disease or frontotemporal dementia, they can be genetic, and there can be up to a 50% risk for the children of people with Alzheimer's or frontotemporal dementia, in those cases which are genetic. And this is very similar to the condition I mentioned called Huntington's disease, where people who have Huntington's disease, their children, each of their children will have a 50% risk of inheriting the condition. So, the earlier one can make a diagnosis, the earlier that a genetic condition can be looked for, and then that can also then have implications for children. When I say children in the genetic context, referring to adult children, rather than children children, or adolescent children, because genetic testing will generally not be done in children or people under the age of 18 for a dementia, unless it's one of those very rare dementias for which there's a known treatment. So, if we are going to test the children of our patients, they need to be over the age of 18.
The diagnosis is important because there's a relative lack of social supports and services. And as soon as the diagnosis is made, we do have access to a lot more supports, particularly through the NDIS, which has been very useful for people in the last five or six years. Prior to the advent of the NDIS, it was really difficult for people to find appropriate supports and services. Younger onset dementia is also important because there is not as many research studies being done, and it's important that we try and understand the younger onset dementia perspective from a research perspective.
As I've mentioned, diagnosis is delayed, and it does take longer to diagnose younger onset dementia than in the older person. As I've mentioned, first symptoms are often interpreted as stress, midlife crisis, problems at work, depression, alcohol, or mental illness. We have done a study on the people we've seen over a period of time, so looking at different types of dementia, the delay to diagnosis, and what diagnosis people received. And it is important that even in an expert facility where we have access to all sorts of scans, and specialists, and tests, a fifth to a quarter of people may leave without a clear diagnosis. So that's not an uncommon point for us to reach with people where we say, "Look, something's going on. Unfortunately, we just don't know what it is. We can't give it a name at the moment." And that is clearly, can be frustrating to people, the patient themselves, the carers, the families.
We see lots of different types of dementias as I mentioned before. There are three or four common types, but in this study that we did, there were 29 different types of dementia. We also, in association with this study, looked at the time to diagnosis, and we've been seeing people with younger onset dementia for many years, and we did a study looking at our patients from the 2000, or actually the 1990s through the 2000s, and up to 2014, looking at how long it had taken to make a diagnosis in this group, and what we found was that on average, it was about 3.8 years. Though, in the period after we established a younger onset dementia service, which is around 2010 or '11, from that period on, the delay was much shorter, so it was 2.8 years. Now, it wasn't just because we established a service that the delay was reduced, but I think that certainly had an impact that people knew where to go, and we established a service that was available at a state-wide level. Getting the diagnosis may not be the most welcome of news, but at least it provides people with an understanding of what's happened. As this lady has said in this quote, "Getting the diagnosis is so important, and the doctors understand..." As mentioned, there can be an impact. The diagnosis has an impact on relationships, children. It has financial impacts and social impacts, which is why it's so important to diagnose early.
In terms of the diagnosis, there is often loss and grief associated with the diagnosis of younger onset dementia, but in some situations, it comes as a relief to know and to show that there is something going on, and now we can deal with it. We can get on and actually deal with what this is, because we know what it is now. And there's been a number of media articles and shows on the younger onset experience, and this was one of these that is on the slide here for Andy and his partner. The impact on carers is significant, and needs to be a significant focus when seeing people with younger onset dementia. And it is probably greater than the impact on those carers of people who are older when they're diagnosed. There's been very limited research on the impact of younger onset dementia on couples, and on the impact on couples.
Genetics, as I've mentioned earlier, there is a high proportion of younger onset dementia of genetic diagnosis in people with younger onset dementia. And this can have a very complex impact on people. Making a genetic diagnosis is something that has to be discussed with the person and their immediate family, because it has impact on the wider family. As I've often said to people, making a genetic diagnosis will have an impact, not just on yourself and your children, but may have an impact on siblings. It may have an impact on parents. That information is not always welcome though, and this is something that has to be considered when thinking about whether to have genetic testing, and then on who to tell. The knowledge, or the new knowledge that there's a genetic condition within a family needs to be thought about very carefully, because it's not always welcome news.
So, how does younger onset dementia progress? Well, we actually were very keen to understand this and provide an answer to our patients and their families, and there there's been some literature and medical research looking at this, but we decided we would do it in our own group, and look at what's happened to people with younger onset dementia that we had seen over a 20-year period. We looked at a research study of 500 people who'd been through our service, diagnosed with young or onset dementia, trying to understand what's happened to those people through a resource which is known as the National Death Index. So, we're actually able to identify when people passed away compared to when they were first diagnosed. What this showed us is most diagnoses of young onset dementia, the average duration of life from diagnosis was around 10 years. That was about the same for Alzheimer's disease, frontotemporal dementia, it’s a little bit less for people with vascular dementia, but by and large, the average was 10 years. Now, it's important to note this is an average. So what an average means is that there were some people whose illness lasted three or four years, other people whose illness lasted 15 to 20 years. People with Huntington's disease, on average, had a duration of life from diagnosis of about 20 years.
Now, this is one of the graphs that we've done which shows you what's happened to people. So, this is where we begin at time zero for a person or the diagnosis, and what we're seeing along the bottom here is how many years people live for, and you can see that for Alzheimer's disease, frontotemporal, and vascular dementia patients, which are these coloured lines here, the red, the orange, the blue, and the green, it's a similar pathway that the red line is where 50% of people have died, and you can see that that red line is at about the 10-year mark. But there are people whose diagnosis and duration of illness went for 20, 25 years, and then a proportion of people for whom it was less than 10 years.
Unfortunately, at the of the illness or when we diagnose people, we don't necessarily know where they're going to fall on this chart. We don't, unfortunately, have any blood tests that tells us how quick or how slow the dementia is going to progress in any one person. The best indicator is usually what's happened in that person, themselves, over time, and how rapid or slow it's been for them.
Community supports. I don't have to... I suppose I do have to, but I don't really have to mention the role that Dementia Australia play in providing supports to people across the nation. Huntington's Victoria and Huntington's associations in other states also provide similar support to people with Huntington's disease.
Now, what about treatments? We'll finish with this, just a brief discussion on treatments of Alzheimer's disease particularly, but also other dementias. Despite numerous Alzheimer's trials, we've yet to find a drug which helps to slow down or stop the progression. There have been some promising newer trials using antibodies against amyloid, and I actually prepared this talk, or updated this talk a couple of days ago, but just to show you how quickly things move, I woke up yesterday morning and found that the FDA in America has granted an accelerated approval for an Alzheimer's drug on June the 7th, 2021. This is a drug called Aducanumab, and hopefully, that similar approval will be provided here in Australia for this drug, which does work against amyloid, and for which there's some reasonable evidence that it can help slow things down in Alzheimer's disease.
We, at The Royal Melbourne and The Alfred Hospital with Professor Terry O'Brien, are looking at a frontotemporal dementia study. Frontotemporal dementia drug studies have been few and far between, unfortunately. We've now have a large grant to look at frontotemporal dementia using a drug called sodium selenate, which was discovered by some local scientists here in Melbourne. That study is now open and recruiting for frontotemporal dementia.
I might just mention there are what are called gene silencing trials in Huntington's disease. What this means is that in Huntington's disease, we know what the abnormal protein is, and there are drugs being used to track down this abnormal protein and get rid of it, and stop the protein itself accumulating. These drugs are part of a family called the gene silencing drug family, and there are potentially treatments on the horizon for that particular type of frontotemporal dementia that's associated with motor neurone disease. These just some of the people involved in our work at The Royal Melbourne Hospital in the Young Onset Dementia Service, our crack team. Maybe not the best choice of words, but they are a very, very good team, and involved in the diagnosis, and assessment, and treatment of people with younger onset dementia. That's my last slide. Thank you very much for listening.
[Title card: Together we can reshape the impact of dementia]
[Title card: Dementia Australia. 1800 100 500. Dementia.org.au]
[END of recorded material]
Diagnosing younger onset dementia
Currently there is no single test to tell if a person has younger onset dementia.
A medical specialist will only make a diagnosis of younger onset dementia after careful assessment. This might include:
- testing your thinking and behaviour, and how they’re affecting the way you function
- blood tests
- brain imaging to find damage from strokes or blood vessel disease
- an ultrasound to check for damage in your carotid arteries
- testing your reflexes, senses, coordination and strength
- memory tests
- your detailed medical history.
Treatment and management of younger onset dementia
There’s no single treatment or cure for younger onset dementia yet. Researchers are working all over the world, looking for new treatments, and progress is being made.
Occupational therapy can help you adapt to changes in abilities and stay independent and social.
Support is vital for people living with younger onset dementia. The help of families, friends and carers can make a positive difference to managing the condition and living well.
Living with younger onset dementia
Younger onset dementia presents unique social, emotional, financial and support challenges. When you’re diagnosed, you might be:
- in full-time employment
- actively raising a family
- financially responsible for your family
- physically healthy.
If you have a partner, they might need to take on extra roles, like caring for you while also raising children and managing finances. This may lead to reducing work hours or giving up work altogether.
Transcript
[Beginning of recorded material]
[Title card: Dementia Australia]
[Title card: Younger onset dementia and the Caring Role]
Dr Kelso: Hello, my name's Wendy Kelso, and I'm here today to talk about young onset dementia, and the caring role, for the Experts in Dementia Series. I work as a clinical neuropsychologist at The Royal Melbourne Hospital, at the Neuropsychiatry Unit, and I also run the Frontotemporal Support Group for Dementia Australia. I'd just like to begin by Acknowledgement of Country. I begin today by acknowledging the traditional custodians of the land, on which we meet today, and pay my respects to their Elders, past, present, and emerging. I extend that respect to Aboriginal and Torres Strait Islander peoples here today. This is what we're going to talk about today, which is caring for someone with young onset dementia, and how that differs for caring with someone that has dementia in their '70s, or '80s, or '90s. The rewards and challenges of caring, personality types and caring, care partner stress and how to reduce it, emotions in caregiving, and how they can impact on the caregiving experience, and how to use supports to your advantage.
So, what do carers do? Caring is a very special role, and often, carers have a huge range of different tasks that they're responsible for, including emotional care, aspects of personal care, domestic care, physical care, looking after finances, providing health care, and also, communication. How is caring for someone with young onset dementia unique? Dementia is often unexpected in a younger person, and many people take a very long time to actually get a diagnosis, because when they visit a GP or a specialist, sometimes, they're not believed, and the GP may not believe that dementia can affect a younger person. And that delay into diagnosis can be very important, because it can impact how the person feels about the person living with dementia, and believing that the changes may not be real. The care partner may still be working, and this impacts on the family, which means that there's often financial hardship, and a loss of income. And one of the people in the relationship may have to stop work, or the other has to take on all the burden of the financial responsibility.
There are often dependent children involved, and also, you may be looking after people, your parents, for example, and be part of a sandwich generation, where you're looking after younger children and parents. There's often a grief and loss, and changes of roles and expectations. And it's very difficult because the future's very uncertain, and often, people don't know what the future's going to look like, and how long the person with dementia will be alive for.
So, what influences caring in young onset dementia? Something that really influences caring is changes in relationships, and often, there can be relationship changes because there's frustration on both sides. The person living with dementia may have had to give up work, and that may be a huge loss for them, and the other person may have also had to give up work to care for the person with dementia. There may be family tension in the children because they don't understand the changes that's happening in mum and dad, and wonder if it may be their fault. Sometimes, there's isolation and loneliness, and often, friends stop visiting because there's a stigma involved in dementia, or friends may not know how to relate to the person living with dementia anymore.
What also influences a relationship is the personality characteristics of the care partner, and the person living with dementia. And these may be personality characteristics that have been lifelong. There may have been tensions in the relationship before the person developed dementia, and that can impact on caring for someone once they have a diagnosis of dementia. Sometimes, there's feelings of guilt and obligation, wondering if you could be doing a better job caring, feeling obligated to be in a caring role, when sometimes, it's very frustrating to do that. There's also stigma involved with people treating you differently, and people treating the person living with dementia differently. Often, there's a huge amount of grief, and sadness, and devastation. Why did this happen to us? What do we do to deserve this? And there is a difficult balance of caregiving and self-care.
Other things that are impacting the caring role are also the physical symptoms associated with dementia, the type of dementia – so if someone has Alzheimer's disease, for example, the type of person they are and their personality may be preserved until quite late in the illness, but with frontotemporal dementia, there's often changes to behaviour and personality quite early, and that can impact on intimacy and the relationship between the two partners. Also, rate of disease progression can impact on caring – so, for this, it's very slow illness progression to very quick. Behavioural symptoms, so if the person has changes in behaviour, that can cause changes in the relationship and can be difficult to manage. And also, can sometimes be frightening, or young children may not understand what's going on, if they live in the family home. And dementia may be one of many medical conditions that the person has, and there may be quite complex medical appointments that you have to attend, and take up a lot of time.
So, relationships and connection are really core in dementia. And I think, one of the most common things that we find, particularly when I'm running support groups, is people grieve the loss of the connection with the person living with dementia. And the person living with dementia grieves that loss of connection, as well. They may not be able to communicate the way they did before, because sometimes, there's language changes, where the person with dementia may not be able to express what they want as easily as they did in the past. They may lose language altogether. They may not be able to understand language as much. And also, there may be changes in what we call social cognition, so the person with dementia may find it more difficult to read emotions of the other people living in the family. They may find it more difficult to see if someone's happy, or sad, or frustrated, or angry, because a part of the brain that processes emotions and facial recognition is damaged.
They may not have the same empathy towards the other people in the family, due to changes in the brain, and that could all impact on the connection relationship together. All people need love and intimacy, and compassion and understanding, and you may need to think of other ways to be able to communicate or to show compassion, and love, and intimacy, and get your needs met. Often, we find it helpful for people to think about what brought you together in the first place, and why are you the carer in this particular relationship, and what still binds you together? What's still left in the relationship that's very special and connects you, and think about the family of origin, and the culture, and your shared past experiences. And also, try and live in the present and not worry too much about the future. Live day by day, and think about shared memories that you're making together now.
What are some of the rewards and challenges of caring? Some of the rewards of caring are it's a very important role, and there are actually many rewards. And it is an opportunity for personal growth and developing new skills. For some people, they may have never been a carer before, and this may be the biggest challenge that they have in their life. And it's also the biggest opportunity for personal development and growth. It's a time to strengthen the relationship with the person that you care for, and meet new challenges. And also, it can be really rewarding to know that you've contributed to improving someone's quality of life, and can provide a sense of meaning and purpose for the person that's caring. But there are lots of other consequences of caregiving, and particularly when you're caring for someone with young onset dementia, it can be actually more difficult than caring for someone who's older that develops dementia.
One of the big things is, obviously, financial changes, which is there is often a reduced income to the family unit, because one person may not be able to continue work, or they may have to work in a reduced part-time capacity. You may have to access super insurance early, or take an unexpected retirement. There are physical changes, as well, which means that people that are in caring roles, and lots of research studies have shown to have increased prevalence of chronic health conditions, and poorer mental health, and reduced quality of life. And there's high rates of depression and anxiety in caregivers, and depression rates increase with illness severity. So often, as the illness progresses, and the person with dementia may not be able to do the same tasks as they did before, and the actual amount of caring increases, both physically, emotionally, and potentially, behaviourally, often, depression rates increase in the person or the people in the caring role.
I think it's important to think about why are you the carer? And some people start being the carer because of expectation, or there's no one else available. But I think it does impact on the caring journey, and I think it's important to spend some time reflecting about why you're in this role. And look, some people are born carers, and their personality is ideally suited to caring. They're patient people, they love caring for others, but not everyone is like that. And some people, in a caring role, are not a patient person, and they can find caring very, very difficult. And some people are just not suited to the caring role, and may need a lot of support. Now, there's nothing wrong with that. No one's to blame for that but just different personality types can impact on the caring role. So, think carefully about your own strengths and limitations, when you're in the caring role, and even before you take on those tasks.
So why are you the carer? Is it because you love the person and you've been together forever? Is it that you feel a sense of duty or obligation, or there's other people in the family that are expecting you to care? For example, you might be the eldest sibling, and there's a family or cultural expectation that you will look after the person? It may be because you feel guilty, or the relationship wasn't wonderful before the person developed dementia, and you feel now that you must look after them? Expectation, maybe you need to for financial reasons, and there's no other option, and you don't have enough money to actually get supports in, or there's no one else available.
There's been a lot of research in personality types in caregiving, and some things that are found to be protective, which means that the person that's in the caring role maintains a greater level of fulfilment and quality of life, and reduced feelings of depression and anxiety. People that tend to be calm and less reactive, and able to regulate their stress levels. People that are socially connected, so they have a lot of support around them, are able to call on friends or family. That they're able to think flexibly, and if things go wrong, that they might be able to problem solve.
They've got the ability to delegate and the confidence to ask for help, and they also feel confident in their role as a carer, and that can be very difficult to do at the beginning, and often, throughout the journey, confidence can be rattled because as the dementia progresses, there are new challenges every day. And you may find that you've just solved one challenge, and then the dementia changes a little bit again, and the person has a change in ability, or there's different challenges that come up for both of you, and you have to adjust again, which can take some time.
Just wanted to talk now about carer stress and burnout. So, what is burnout? It's a state of physical, emotional, and mental exhaustion for those providing care to a friend or family member. And it's often accompanied by a change in attitude from positive and caring, to appearing negative and unconcerned, with many stages in between. So it can be, for example, someone who's always shown a great deal of empathy and compassion, feels that their emotional bucket is empty. So, for example, that they've been caring for quite a while, or they don't have much support, and they don't have many resources left to be able to care for the person, and they get exhausted.
You can see here, from this graph, that on the left-hand side is performance, and then on the right-hand side there's stress levels. And there's what we call a sweet spot, where a little bit of stress can be really helpful, and can improve your performance, and you perform optimally. But you can see, if you get too stressed or you get too tired, then there's really negative impacts of having too much stress. And increased cortisol over a long period of time can have a lot of negative effects on health, and can cause significant illness – people to break down, people to become very depressed, and burnout. So, it's about finding the right level, sort of in between, if you can, where you know that if you're finding that you're nearly at the point where you know that you're starting to feel differently, how you did before, and you're reacting differently, or your level of compassion has been significantly impacted, think about whether you might be developing burnout.
Why does carer stress occur? Often, people are so busy caring for someone that it can become really easy to neglect their emotional, physical, and spiritual health. And life doesn't stop when you're a care partner, particularly, when you're young. So, for example, when you're caring for someone with young onset dementia, you may still have young children, you may be looking after elderly parents, you're still working, and you have to keep going on. And the demands can sometimes feel overwhelming, which leads to fatigue, and a feeling of hopelessness.
What increases stress levels and what can we do about it? Often, people talk about that other people just simply do not understand the experience that the person's going through, either the person living with young onset dementia, or the care partner and family. And because young onset dementia is quite rare, often, people just simply do not understand, and they've never been in that situation, and they can find it quite hard to relate. And that means that, sometimes, people stop visiting because they're not quite sure what to say, and they feel that they might embarrass or upset the person living with dementia or the care partner. So therefore, that increases loneliness and isolation, which has negative impacts on mental health. Often, carers do not get the help they need or they don't know where to access it. And there's often a lack of resources, and education, and training, specifically about young onset dementia and the different types, impacts on behaviour, and also, what happens after the diagnosis.
It's quite difficult to access post-diagnostic care, and Dementia Australia now have a post-diagnostic care service, once someone has been diagnosed. We often find people often wait a very long time to get diagnosed, and then once they receive the diagnosis, that's it, they get very little follow-up, and actually, the time they need the support the most is actually after the diagnosis, not beforehand. There's a lack of specialist services for younger people, and that means a lack of specialist services for respite, for different activities that are meaningful, for those people that need to move into residential care, there's a lack of appropriate facilities and setups. And there's also a need for behavioural support, and often people find that very difficult to access.
So, what are some of the symptoms of burnout? How would you know if you're becoming burnt-out if you are a care partner? Some people withdraw from family, and friends, and loved ones, and they stop going out, and start refusing invitations. That they have a loss of interest in their usual activities, or when they do their usual activities, they can't gain the same pleasure that they’re used to. There may be changes in sleep or appetite. Some people feel blue, or helpless, or hopeless, and they just feel like life's not worth living anymore. Or they may become sick more often, that they get colds, or flu, or upset tummy, and often, these are due to stress. Becoming more irritable than they normally would. And look, often, the symptoms of burnout are very similar to depression, and they could require sort of clinical treatment. So if you're feeling that you're at the end, it's really important to access supports, ideally, before you reach burnout, but particularly, if you do reach burnout, and the first point of call is usually a really good and supportive GP.
Now, I want to talk about emotions in caregiving, and I think in the literature and also in the media, there's many images of people that are caregivers, that are Florence Nightingale and looking after people, and all positive emotions about caregiving. And I think sometimes that can make it really difficult to acknowledge that, actually, sometimes it's really, really very hard. So, I think it's important to acknowledge that all emotions about caregiving are valid and important, and acknowledge your feelings, not just the positive ones about caring, but also the ones that are actually challenging or difficult. And some of these feelings are hard to admit, for fear of being judged by others, or burdening other people, or acknowledging that maybe you're not coping, and some people feel that that might be a sense of weakness, and they're too scared to talk to other people, that they're not actually managing as well as they would like. And there is no right or wrong way to feel. This is often the first time anyone's actually looked after someone with dementia, so you're learning every single day.
What are some of the emotions that people feel when they're caregiving? Sometimes, it's ambivalence that they're not really sure if they want to continue in the caring role. Sometimes, they'll feel very anxious about what the future may hold, what that may mean for them, for their children. Sometimes, it's like Groundhog Day, where people find that it's quite boring looking after someone with dementia. Particularly if there's lots of changes in behaviour, or the same things are happening each day. Sometimes people can find the behaviours or changes embarrassing or disgusting, and there's a lot of embarrassment. Sometimes, particularly teenage children, if there are changes in the person living with dementia, they may find some of these changes embarrassing. The person living with dementia is not trying to make them feel embarrassed, but they can't help it, due to brain changes, but it can still make children and teenagers sometimes feel embarrassed, or not wanting to bring family and friends home.
Often, there's fear about the future. Will you be able to cope? Will you be able to manage if changes occur again? There may be jealousy with other friends and family that are not in a caring role, with the freedom that they have. It can be resentment towards the person you're caring for, and feelings of anger and hostility. And often, the overwhelming feeling is of loss and grief, and it can feel like a rollercoaster. And we often talk to families that there's huge changes, minute by minute, hour by hour, day by day, and sometimes, you just have to hold on. Some days will be better than others, but it is a huge rollercoaster of emotions, particularly, when you're first diagnosed, but right through the entire caring journey.
So, what can we do to help? We can identify and acknowledge feelings, and practise self-compassion. We can keep active and make sure that we look after our physical health. We can create a support system around us by enlisting friends and family, and also care organisations, and Dementia Australia. You can join a care partner support group, and Dementia Australia run a variety of different caring support groups which I'll talk about in a second. Often, people find grief counselling or counselling very useful, and education, and also getting some advice about cognitive interventions, to compensate for changes in memory and thinking, and also to assist with changes in behaviour, looking at respite, and sleep, and self-care.
So, what about grief and loss in young onset dementia? Often, when people are first diagnosed, there's a huge amount of grief and loss, both for the person living with dementia that have just been diagnosed, because their future is not what they thought it was going to be. Often, they may not be able to continue working in the same type of work that they had, which can be core to their sense of identity. They may find that their role in the relationship has changed, and they may find that the relationship with their partner, and their children, and their parents has also changed. And dementia is a life-limiting illness, so they're also thinking about the future, and often, for the care partner as well, there's a huge amount of grief that they were hoping potentially to retire together, to do things together, until they're old age, and what they had of their expectations of the future have been totally altered.
The experience of grief is very personal, and it's really different for every family, and there's no timetable for recovery. Often, people find that they are grieving throughout the illness from the very beginning to the very end, and then there's a different type of grief after the person dies. And often, it's what we call disenfranchised grief that can be very difficult, which is grief that's not acknowledged by society, that actually happens before the person with dementia dies. Where there may be changes in the relationship, and in intimacy, and communication, and possibly, in personality. And it's a different type of grief, and it's a grief that many people in the community don't acknowledge, or understand, and this can mean that it's quite isolating for people in a caring role.
I wanted to talk briefly about respite now, and respite is absolutely vital, and much needed, but it's often underutilised. Carers often are too nervous, or worried, or guilty, to organise respite, or it can feel too overwhelming to actually get organised, and to get all the paperwork done, and work out where the best place is. And particularly the first time that you utilise respite, it can be so stressful that people are reluctant to do it again, particularly, if it's first time they've been separated from their partner. We always recommend people to utilise it in the early stages, in the middle stages, and the later stages of the illness, so people living with dementia can get used to it. And there's adjustment on both sides, and it's really important to approach with thought and care. There are different types of respite. It may be that you would prefer in-home respite where someone comes into the home, and stays with the person living with dementia in your family home, or you can organise out of home respite in a house, or a residential care facility that's set up for someone with young onset dementia.
One of the things that occurs with respite is, often, people are so stressed before they have a period of respite, getting the person ready for respite, that when they actually have the person in respite, they find that they're not utilising their time effectively. And they're so stressed with a million different jobs that they don't know what to do. We often counsel people to think about what are specific goals that you really like to accomplish, before you plan the period of respite, and the goals must be attainable during the respite time. So, it may be simply that your goal is to catch up on sleep, or you want to clean the house, or you want to go out to lunch, but having those goals can be really good because it means that, in a lot of the research, that care partners have significantly improved satisfaction if the respite is planned and the goals are achieved.
One of the most difficult things that people find is asking for help. And sometimes, it's because they feel guilty and they don't want to burden others. Many people find that people say, "Oh, yes. Just give me a call anytime that you need help." But they don't actually give specific examples of what they could be helpful with, and so, people don't actually then call the person to enlist the help. So, how to ask for help? Be specific – if you're talking to friends and family, tell them what you'd really like them to do, and utilise the strengths of those around you. People are often waiting for you to ask but they don't want to burden you, and they don't want to intrude, and they don't know exactly how to communicate what help would be useful. And people may be nervous or uncomfortable, and they may not understand dementia, so try and normalise the experience for them. Let them in, tell them what's going on with you, and also with the person living with dementia, so they feel more comfortable spending time and being able to assist you.
Some people are much better at providing practical assistance than emotional support. That's absolutely okay, but think about your group of friends and family, and try and work out who's going to be best at what. Tasks to consider delegating – it can be emotional support with a person with young onset dementia. For example, if the person with young onset dementia has got a lifelong friend, or a group they used to be involved in, or work colleagues, they might be able to provide emotional support. Or emotional support for the person in the caring role, so friends and family, or a best friend from a long time ago that knows you really well that you trust, and that you can break down in front of, and if you're comfortable, crying and acknowledging that it's really difficult.
Sometimes, people are much better at practical things such as managing medications or collecting scripts. They may be useful at providing housework assistance or garden maintenance. They may be able to provide personal care, or you may know someone that used to work as an accountant, or can help with finances, or they may not be good at the practical support in the home, but they may be great at providing diversional activities, such as taking someone out on a drive, or an outing, or to a music festival, or to, for example, a choir, or something that the person with dementia might really love to do. And they may also be able to provide involving them in art, or sport, or reading them stories, writing together, or providing photos of times in the past, where they've got the shared experience, and they can reminisce about happy memories.
Just wanted to talk now briefly about available supports. There's a range of available supports, and all of these are on the Dementia Australia website. There's a National Dementia Helpline and Living with Dementia programs. And there's a variety of support groups for care partners of people living with young onset dementia around Australia. And at the moment, Dementia Australia's actually increasing the range of support groups available. At the moment, they have been provided via Zoom recently, and probably what will happen, there'll be Zoom groups, and also, in person support groups going forward. There's also a library at Dementia Australia with a great range of books and resources, and there's a variety of helpful websites.
If the person living with dementia is under 65, they're eligible for the National Disability Insurance Scheme. And this can be accessed with support of when you first get the diagnosis, by using a social worker, for example, on the team. And behaviour support can actually be provided through the NDIS, if it's deemed reasonably and necessary. And for people over 65, it can be My Aged Care. There's a list of other supports here, so some people with young onset dementia have rarer forms, such as motor neuron disease, or Parkinson's disease, or frontotemporal dementia, and we find that the Rare Dementia Support in the UK has actually got a range of excellent information and support available for different types of dementia that are quite rare.
I'd just like to thank you for having me today, and also, thank people living with dementia, and their families. Every time that we have the privilege of looking after a family living with dementia, and their care partners, we, as health professionals, learn more about dementia, and that can help us assist other people in the future. I'd also like to acknowledge Neuropsychiatry, Royal Melbourne Hospital. Thank you very much.
[Title card: Together we can reshape the impact of dementia]
[Title card: Dementia Australia. 1800 100 500. Dementia.org.au]
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Other people’s attitudes can be challenging. It can be hard for family and friends to accept that a younger person can have dementia, particularly when no obvious physical changes can be seen. It can lead to losing touch with family, friends and hobbies previous enjoyed.
Children often have strong feelings about dementia and the impact it has on them. They might feel angry, resentful or withdrawn. They might not want to talk with their parents because they don’t want to worry them, or seem like an extra burden. They may prefer to talk to people their own age or to a counsellor.
For more support for children, see our section Dementia in my family.
We have a lot more information and advice in our section Living with dementia section.
How Dementia Australia can help
Whatever your experience of dementia, we're here for you.
- The National Dementia Helpline
Free and confidential, the National Dementia Helpline, 1800 100 500, provides expert information, advice and support, 24 hours a day, seven days a week, 365 days a year.
https://pshtest.dementia.org.au/get-support/national-dementia-helpline - What next? After your diagnosis
When you get a diagnosis of dementia, it can be hard to know what to do. Here's some advice on where to start.
https://pshtest.dementia.org.au/living-dementia/what-next-after-your-diagnosis - Living with dementia
A diagnosis of dementia changes things. But life goes on. Learn about the changes you can expect, how to plan ahead and what you can do to stay safe, connected, healthy and active with dementia.
https://pshtest.dementia.org.au/living-dementia - For family, friends and carers
Caring for someone with dementia can be rewarding, but it can mean big changes to your life. We have information, advice and support specifically designed for you.
https://pshtest.dementia.org.au/living-dementia/family-friends-and-carers
- National Disability Insurance Scheme (NDIS) support
If you’ve been diagnosed with dementia and you’re under 65, you may be eligible for Australian government support through the National Disability Insurance Scheme (NDIS).
https://pshtest.dementia.org.au/get-support/national-disability-insurance-scheme-ndis-support - Living with younger onset dementia program
Learn about younger onset dementia, coping with change, relationships and communication, planning for the future, strategies and support.
https://pshtest.dementia.org.au/get-involved/events/living-younger-onset-dementia-program
The National Dementia Helpline
Free and confidential, the National Dementia Helpline, 1800 100 500, provides expert information, advice and support, 24 hours a day, seven days a week, 365 days a year. No issue too big, no question too small.