Webinar: Recently Diagnosed with Dementia
Dementia Australia webinars are free videos where subject experts discuss topics relating to dementia for a general audience.
In this webinar, Dementia Advocate Nell Hawe speaks about her experience of being diagnosed with younger onset Alzheimer’s disease. Nell shares information about dementia and what supports are available. She shares her insight and helpful strategies for living positively and well with dementia.
Nell is joined by Scientia Professor Henry Brodaty, who talks about the brain, common types of dementia and further strategies for living well.
Transcript
[Beginning of recorded material]
[Title card: Dementia Australia]
[Title card: Recently diagnosed with dementia]
Nell: Hello, and welcome everyone to Dementia Australia's webinar, recently diagnosed with dementia. I'd like to begin by acknowledging the traditional owners of the land on which we meet today, and pay my respects to Elders, past and present, and to our shared futures. My name is Nell Hawe. I'm a Dementia Australia advocate, and I have younger onset Alzheimer's. Being diagnosed with dementia is often associated with strong emotions and with a sense of uncertainty. However, a diagnosis is your first step in moving forward with dementia. Dementia Australia is here to help you take the next steps. I welcome you to this webinar which will help you to begin to understand more about dementia, and what help and supports are available to you.
Now, you have a name for this disease and an explanation for some of your symptoms. You are ready to learn more about dementia. Knowing more about dementia means you can now know what to expect from what you can do. This webinar will provide introductory information about dementia, and what we know about it so far, provide some basic strategies for living positively with a diagnosis of dementia. Demonstrate that you are not alone, that there is support available for you. There may be useful resources or information sources that you may want to write down during this webinar. I also ask you to reflect on your own experiences during this webinar, so it may be useful to have a pen and paper with you.
Dementia affects people all around the world, both men and women from all walks of life. You may recognise here, Hazel Hawke, former partner of Bob Hawke, our ex-Australian Prime Minister. In most cases, dementia is not inherited, it's not contagious, but it does not discriminate. The risk of developing dementia does increase with age, however. 1 in 10 people over the age of 65, and 3 in 10 people over 85 years of age will develop dementia.
Dementia is a name used to describe a range of symptoms caused by brain disease. Dementia is characterised by a progressive decline in memory, thinking, planning, judgement, language, and personality. The structure and chemistry of the brain become increasingly damaged over time. Each person is unique, and as such, the progression and symptoms will differ for every person. Dementia is not a normal part of ageing. The way people experience dementia is different for everyone, do what is important is to focus on the person with dementia. You and your journey, and not this disease.
Some of the common early signs and symptoms, often, people experience are difficulties with short-term memory loss, which may include things like missing appointments, or forgetting parts of a recent conversation, maybe forgetting important dates like birthdays and anniversaries, difficulty staying on task may occur, many people may feel confused about where they are, or what the date or the time of day it is. And there may also be changes with language, an increased difficulty with word finding, or it might take you a little longer to find the right word, have difficulty with your speech, or understanding others, and following conversations.
Sometimes, conversation may change. You may begin to talk less or more. You may lose track of what you are saying, particularly if interrupted or distracted. There may be changes with your judgement and decision making. For example, choosing to dress in an overcoat or thick jumper on a very hot day. You may also find that your mood changes, you may become upset or angry more easily than you did before. And for some people, a loss of interest, generally. You may find activities not as enjoyable as you once did and may not want to participate anymore.
Always remember, everyone is an individual, and while it's very tempting to compare yourself with others, it is especially important not to make comparisons. You are special and you are loved. Dementia affects everyone differently, and no two people will share the same symptoms and signs.
Diagnosis is beneficial because it helps gives us an explanation or a reason for why changes in your memory functioning or behaviour may be occurring. Symptoms can be better understood as being related to dementia, not blamed on you. A diagnosis can support you to develop effective strategies for managing your symptoms. Other conditions or illnesses that may be interfering with memory and/or functioning, such as infections or depression can be addressed and treated. Early diagnosis allows for prompt access to appropriate medications and medical treatment, as well as for opportunity for early interventions, and gaining access to support and services, for example, the NDIS and My Aged Care. Allied health services such as occupational therapy and speech therapy, as well as counsellors, psychologists, and dietitians may all have a role to play in helping you to live well. And now, I'd like to introduce Professor Henry Brodaty, who will explain more about the most common types of dementia, and how they affect people, along with some strategies for promoting wellbeing
Professor Brodaty: There are more than 150 types of dementia. The most common is Alzheimer's disease, affecting 50 to 70% of people with dementia. The second most common is vascular dementia, followed by Lewy body disease, and frontotemporal dementia. Each of these dementias has different characteristics, which I will talk about. In older people, there are often more than one pathology. Often, it's a mixture of Alzheimer's disease and vascular dementia.
In Alzheimer's disease, the nerve cells shrivel up, they lose their branches. The connections between the nerve cells or the synapses are lost. Overall, we see the brain shrinking. And on the left-hand side of this brain, you can see that there's a fairly plump brain, but on the right hand side, it's shrunken like a shrivelled walnut nut, and you can see there are a lot of spaces around it, that's in the centre of the slide. And here, we see the same picture, an actual photograph of a normal brain on your left and one on the right. The one on the right is a patient with Alzheimer's disease. The areas that are in the squares are the areas for language in the temporal lobe, and for memory in the hippocampus. And look at the contrast between the one on the left, the normal brain, and the shrunken versions of those areas on the right. The hippocampus is mainly the area for short-term memory, and as the brain cells die, the brain shrinks.
The commonest symptom is memory loss, particularly short-term memory loss. Remembering things from the past may be easy, but remembering a conversation from half an hour ago is lost. The person may have difficulty concentrating or solving complex problems. There may be subtle changes in personality, or decreased motivation. So the person with Alzheimer's disease usually presents with loss of short-term memory, problems with concentration, and difficulties with problem solving. There may also be word finding difficulties. The families will often notice first. Alzheimer's disease is not curable yet.
There are medications which can help stabilise the symptoms for some time. Their effects are modest. Most of these work by elevating a chemical in the brain called acetylcholine. Acetylcholine is the major transmitter, or the major chemical, used the transmission of messages from memory. The commonest drug used is donepezil or Aricept. Others are galantamine, or Reminyl, or Rivastigmine, or Exelon. But there are non-medication strategies that may be helpful in slowing down the rate of decline. These include exercise, a diet that's rich in plant foods, and nuts, and follows the Mediterranean style of diet, staying mentally active and socially active.
The second major course is vascular dementia. This is caused by poor blood flow in the brain. It might be because of narrowing of the blood vessels, as we can see in the diagram on the left, and if the blockage is complete, then no nutrients get to the brain and that part of the brain dies. The symptoms will vary according to which part or parts of the brain are damaged. It could also occur because of a haemorrhage in the brain, or it could be narrowing of very small vessels, called small blood vessel disease, which doesn't present as a stroke. So, there are a number of ways that problems with circulation occur in the brain.
People with vascular dementia may benefit from improving risk factors, such as treating blood pressure, not too vigorously, that could be dangerous in itself, lowering cholesterol, controlling diabetes, and the other measures mentioned earlier such as exercise and diet. People with vascular dementia talk to their doctor about strategies they can use to help forestall future decline in their dementia.
Frontotemporal dementia: There are several types of frontotemporal dementia. There is the behavioural variant where people have changes in their frontal lobes, which affect their personality, behaviour, and emotional responses. They may show apathy, they’d be less motivated, don't do the things they used to do before, or they may become disinhibited, lose their filter, do things which are out of character for them. A second type of frontotemporal dementia is semantic dementia. Here, the pathology is more in the temporal lobes, and the main feature is the decline in language. It's the meaning of words and finding the right words for things. Reading, spelling, and comprehension may be affected.
A third type is also a language variant and it's a non-fluent aphasia, which is progressive. They don't lose the meaning of words, but it's a difficulty in stringing the words together. You get what I mean? Difficulty organising a sentence and fluid speech is gradually lost. There is no treatment or cure for frontotemporal dementia. There are medications for secondary symptoms such as depression, and these can help. Speech therapy can be very valuable. Occupational therapy can be valuable for all the dementias. Working out a routine for the person, activities, giving the person some idea about how to feel useful again, and how to enjoy life despite their disability, because, ultimately, what we're doing is trying to help people live with a disability, and live well. And a key part of any management strategy is the family – having educational and behavioural strategies, and the families become the expert in helping their loved one with dementia.
Lewy body disease: One of the earlier signs of Lewy body disease is REM sleep disorder. People can have abnormal movements during their sleep. Symptoms may vary markedly within a few hours or over days. People may have difficulty with visual-spatial abilities such as judging distances. Visual hallucinations are common, typically of people or of animals. And people may also exhibit symptoms similar to Parkinson's disease with slowing of movement, tremor, or unsteadiness of gait. In Lewy body dementia, there's also a loss of nerve cells and an accumulation of a toxic protein in the brain called synuclein.
Some of the medications we use for Alzheimer's disease such as the cholinesterase inhibitors, such as the donepezil or Aricept, rivastigmine or Exelon, galantamine or Reminyl may be helpful, but let's not forget the non-medical things that we can do to benefit the person – the physiotherapy and exercise physiology to help improve movement.
Nell: Every experience is different. As I have previously said, not every person with dementia will experience the same changes in the same order or to this same extent. Your experience of dementia will be embedded in your own history, personality, health, and social environment in which you live and have lived. The same is true for your sense of relationship with others. Understanding these aspects of you can be helpful in identifying how best to support you through the changes that you will experience. You can now see some of the feelings that people living with a diagnosis have expressed. All these feelings are normal. It has been reported that after diagnosis, people worry or think about the stigma that is often associated with dementia. People worry about how others might react, or start to treat them differently to before. Sometimes, people change their relationships with you. It is often because they do not know how to react or what to do.
There are dementia specific counselling services available through Dementia Australia to assist you with feelings and worries associated with a diagnosis of dementia. It is important to be able to talk to people about how you're feeling. Your feelings are valid. Just like you may be experiencing different feelings about your diagnosis, you may also have a different sense of who you would like to tell about your diagnosis, and also, when you would like to tell people about as well. There is no single right time, everyone chooses to speak about their diagnosis differently, and it is not the same for everyone. Dementia Australia can help you with how to tell people if you want to, as well as who to tell and talk through when the right time for you might be.
There are trained support staff on the National Dementia Helpline who you can speak to, and there is information, and resources, and education available that can assist. If you have any questions or concerns about medication, it's also very important that you speak to your doctor or specialist as soon as you can. Here are some examples of what people and families living with dementia have told us have helped them. Talk to someone, this might be a good friend, or a trusted family member, or you may find talking to a professional such as your GP or specialist, helpful. Comparing yourself to others is not helpful, in fact, it can set you up for failure. As we have said, everyone is unique. Therefore, how dementia affects you is individual, as it is the way you manage the changes. But remember, coming to terms with a diagnosis is a process. There are good days and bad days. Acknowledge that, at times, you may grieve the changes that have or are occurring, and continue to do the things that give you pleasure, modify if needed, and if it doesn't work out today, try again tomorrow or another day. Seek out help, and don't try to do this alone. Dementia is not everything all the time, it is some things, some of the time.
We've covered a lot of information in a very short amount of time. The key message is that, you are not alone. Information and support are available to you. Dementia Australia is just a phone call away. Don't miss out on today because you are worried about tomorrow. At Dementia Australia, we have a variety of support services available including individual and family support, counselling for people living with dementia, and their family and support people. The National Dementia Helpline is available 24 hours on 1800 100 500. Support groups such as dementia-friendly alliances, dementia cafes, and younger onset support groups. We have information, and help sheets, and resources on our website. We also have education both face to face and online. There is the Living with Dementia program available, which is specifically designed for people who have recently received a diagnosis of dementia, as well as their support person, to attend a series of workshops where you can meet other people in similar circumstances, and learn about strategies for living well and positively with dementia.
Please remember, you can visit our website, and when you call the National Dementia Helpline on 1800 100 500, you will speak to someone who will understand, not judge, and can help offer some guidance and direction for supports to assist you. Thank you for watching this webinar. Please call our dementia helpline with any questions, and visit our website for further information. And finally, please remember, you can live well with dementia. I do. And all the best with your dementia journey. Nell. Goodbye.
[Title card: Together we can reshape the impact of dementia]
[Title card: Dementia Australia. 1800 100 500. Dementia.org.au]
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