For Episode 34, the Booms Day Prepping panelists join together for a very important discussion regarding dementia, the single greatest cause of disability in older Australians. Dr. Drew Dwyer, a clinical gerontologist explains all about dementia – what are the different types, how does it affect a person, etc.
Wayne Bucklar: You’re listening to Booms Day Prepping, the Baby Boomer podcast where every week a group of Baby Boomers get together and we form a little panel to talk about things concerning us, the Baby Boomer Generation because ‘us’ is really important. So as usual, we have with us our regular panelists – Amanda Lambros, Bron Williams and Brian Hinselwood, our regular Glenn Capelli is unfortunately not with us today, he’s tied up with other matters. And your co-host as normal is Dr. Drew Dwyer and my name is Wayne Bucklar. Drew, today we want to talk about dementia and I guess there’ll be some dead jokes to go with dementia. I’m not sure if I’ve told you they’ll be some dad jokes to go with dementia.
Dr. Drew: Of course, there’s plenty.
Wayne: So Dr. Drew Dwyer, dementia, what’s it all about?
Dr. Drew: Well for some people, it’s always referred to as the “D Word.” It’s the big horrible black word we’re not meant to mention or use. But I chose this subject for the panel to have a discussion because I want the listeners to be able to start to get some information and let’s have a really good open discussion about dementia and what it is and what it means and specifically because people in the Baby Boomer cohort and the older generation, this is a real concern for them. It’s a subject matter of disease and illness that specifically affects these people and this cohort of ageing and it’s something that is always on the minds of older people. So in my book “Ageing in the New Age,” I have a whole chapter devoted to dementia as an introduction and so please, go read the book and then take some of the advice and move on. But what I want to begin with this is spend a few minutes to discuss or give you information clinically and academically what dementia is to ground everyone’s knowledge and I’m going to use very basic language and then I’ll ask the panel to have a thought about what I’m saying and perhaps any questions you may have and then I may be able to answer some of these things because dementia and a subject of dementia is something that we need to communicate about, it needs to be something to have a conversation about and it’s something that is getting more prevalent in our society as the aged population gets larger or bigger or has a bigger impact. So I begin with telling the listeners about dementia. Dementia is an irreversible and progressive organic mental disorder and it can be caused by many different conditions. So there is no true specific, dare I say, but most common types of dementia is Alzheimer’s Disease. But of course, we have different types of dementia and once we step through that we know we have Alzheimer’s disease, which is most prevalent. Alzheimer’s Disease primarily named after the gentleman that discovered the disease, it sits around memory loss, visual, spatial, language changes, indifference, behavior change, agitation, delusional expression, things like that, primarily memory loss. There’s also frontal lobe dementia, dementia affecting the front part of the brain, it affects personality, executive dysfunction, disinhibition, which is losing your moral standards, so to be blunt probably urinating in a public place and not caring about it, swearing and so forth, impulsivity, loss of speech. Lewy Body is another form of dementia – visual hallucination, delusions, Parkinson’s-related tremors, fluctuating memory and sensitivity to antipsychotic medication. And of course, probably the more larger next to Alzheimer’s would have to be “Vascular Dementia” and abrupt and stepwise deterioration of brain and memory caused by many influx in the brain or small ischemic attacks or strokes, a lot of mood behavior, motor dysfunction and of course, it often leads to severe depression. But when we think about dementia, I want our listeners to understand the basics and that is it’s irreversible, it’s progressive and it will eventually become a terminal disease. It involves a progressive loss of cognitive abilities and specifically the biggest impact is on the individual being unable to self-care and adapt to themselves. And so while dementia is a major cause of disease in Western societies, the problem is that it’s heavily undiagnosed and poorly treated at this point. The reason for that is because early detection and diagnosis is the key thing to get done, pick up on it early, get it diagnosed early and then we can set up good treatment and management plan even though accepting that there is no cure for dementia. So dementia care work usually takes a journey between people and that care work journey has always and heavily been reported as a journey that is like a dance with different partners. So it’s like dealing with different people every day. There’s a great movie and a number of movies that expressed this, “50 First Dates” comes to mind, a movie about a gentleman and his partner with Alzheimer’s disease and then everyday, it’s like having a brand-new date with that person because he has to reintroduce himself, go through the process of reconnecting with this individual. The journey is very observable and measurable so we have to understand that you clearly see it, feel it and understand it. But it commonly is understood and felt on a journey that takes three stages. I personally as a doctor of geriatric care would give it four stages but let’s stick with the basic three. There is mild dementia, moderate dementia and severe dementia. And of course, severe dementia will end up becoming end-stage dementia. So mild dementia of course is people appearing apathetic, and less sparkle, unwilling to try things, slight changes in their adaptability, poor judgment, funnily enough losing your keys and I’m sure everybody goes, “Oh my God, I’ve got dementia.” Missing things, walking into rooms not knowing why you went into them. It doesn’t necessarily mean we’ve all got mild dementia. Some of these things are normal parts of ageing, but I can assure you, dementia is not a normal part of ageing. So not everybody who ages gets dementia. Although roughly the statistics are developing bigger with our bigger ageing population. So in the next 10 years, probably 2 out of every 4 people over the age of 85 will probably have dementia and that’s a big impact on society when you start to think about it. So people with mild dementia become more forgetful, they’re likely to repeat themselves a bit, tell the same stories, feel more irritable and upset if they fail at something or can’t achieve what they normally achieve and they particularly have a lot of difficulty in doing basic things like handling money, organizing a dinner event or a large party or anything like that, it becomes very confusing for them. Moderate dementia of course, people become more forgetful of recent and distant thing, they become confused in time and place, they get lost in familiar surroundings, they forget names of people that they should know, particularly family members, they forget to turn off kettles and fry pans and things, they become very dangerous to themselves and their environment, they can wander around and become lost, they see and hear and hallucinate the things and things that aren’t happening and people that aren’t there, they become repetitive which is called “perseverative,” and they neglect hygiene, eating, weight management and personal care, become angry, and upset and stressed and frustrated if you try and chip them about it. And then of course, severe dementia is unable to remember occurrences from a few minutes ago, things like just having a meal, losing their ability to understand speech, how to talk, becoming incontinent is very common in feces and urine, no recognition of friends and family, problems with swallowing, and eating, bathing, and toileting and daily living, fail to recognize everyday objects and how to use them, probably being disrupted at night and up at night and restless at night, agitated and restless, not being able to sit still, very difficulty walking, eventually becoming wheelchair, or bed bound or chairbound, having uncontrolled movements and permanent immobility is what comes from severe dementia. Severe dementia then often moves into end stage where will move into end-stage dementia and end-stage dementia in its advanced form, it is the end stage of life for a person who has dementia. Reduced mobility, poor self-care, poor nutrition, skin breakdown, general debilitation of their whole body. And we characterize end-stage dementia in three stages or three parts. We have “neurocognitive end-stage dementia” which is profound confusion and disorientation, very combative to change and behavioral resistance, what we call “responsive behavior,” progressive worsening of speech. They become mute and inability to communicate, they become incoherent with many things. Then we look at “functional end-stage dementia” which is focused around immobility, the loss of them to become mobile and walk and to self-care, they become totally dependent on carers and bed and chairbound. And of course the last part that we look at in end-stage dementia to help graded as clinicians is “nutritional end-stage dementia,” total loss of appetite, swallowing, body fluid balance, aspiration problems, difficulty in trying to swallow food that leads to sarcopenia or cachexia, a massive amount of atrophy and weight loss, a high frailty index and of course, the person contracts up, shrivels up and becomes very end stage and terminal. Dementia is an end-stage disease, so at some point it will turn terminal. And as we talk about this today, I really want the listeners to understand, I have a great link that we’ll be putting up in the Boomer website and it’s on my website too. The most important thing to understand about dementia and what it is for you is to plan for dementia. If you do not have a plan for dementia, whether you’ve got it or not, dementia will have a plan for you I can assure you and that plan will generally not be what you are anticipating as a person who lives with the signs and symptoms of dementia and you have to be bold and strong to confront this terrible syndrome of diseases because it causes a lot of problems with many people not just the person who is living with the diagnosis. So I’m going to end that there and I’m just going to move into and have the discussion and as the team talks, I want the listeners to listen to what we’re talking about, but I want to correct and adjust people on the flow as an ongoing learning action, learning activity. But there’s a lot of things we need to learn about dementia and specifically how we talk about it, how we treat it, how we manage it, how we discuss it and what it actually means to the people who have it and the people who experience it. So I’m going to open up my first question to anyone on the panel, so I’m going to go for Bron, perhaps she may have a question. Throw something at me because I am expert at this and my offer advice is quite clinical and expert as a doctor of geriatric nursing so I am evidence-based and I can give you some very good answers that listeners will probably want to hear.
Bron Williams: Okay. I actually have two questions and they come out of personal experience with my now ex-father-in-law, as you know I’m no longer married to his son and ‘ex’ he’s passed away. He had a heart attack and like an almost immediate consequence was part of his recovery, he had been an Anglican minister, so very much being the mild, quiet man – suddenly, he became this very aggressive and verbally abusive man. And so my question about that is, was that anger and that desire probably to swear his head off always there, but culture, and conditioning and his work meant that he’s tempered down and as a consequence of having like a major health crisis, those inhibitions left? So that’s the first question, but then secondly, he did then go into Alzheimer’s and so I want to know whether the physical health crisis of the heart attack, was that a trigger for something that was already existing there? Was he already in the early stages of dementia and nobody had noticed and the heart attack actually just brought it all out into the open?
Dr. Drew: Okay, good questions. Now to understand dementia holistically or as a big umbrella picture, we need to understand first the causes of dementia. So through the science that we study as dementia, we look at what causes dementia. A couple of things for learners, for listeners to understand is that we really don’t know the true diagnosis of a dementia illness or diagnosis until the person actually passes away and there is able to be an autopsy of the brain. So we categorize people on the observations of their signs and symptoms and of course, those observations are things we see in how they present physically, how they present with their disease process and how they present specifically with what we know as “responsive behaviors,” so how they’re responding to environment and to the disease and to so forth. So when we look at dementia, we also look at the older person. Now given that there is young onset dementia, which is younger people who get it, people in their 50s, that’s a different categorization because we get to see more specifically the effect on the brain to a person who doesn’t have what we call “comorbidity.” But in general, an older person will probably have chronic disease, multiple medications, probably some cognitive issues, some vision, hearing and sensory loss, poor muscle strength, some high risk of urinary, fecal incontinence, maybe high risk of other issues around falls, and muscle, and weight loss, and bone mineral density and the likes. So when we add these things up, we then add their high risk at that age of developing also as the diagnosis or the science in terms of dementia. Now we don’t actually know whether or not another disease can cause dementia, but we do know that there’s a high prevalence in people with dementia with people who also have ischemic disease, so people with strokes, people with arterial and blood issues, heart issues, are highly prone or sit in the category of also having vascular dementia because of the strokes, because of the flow of blood through the body, the risk around the heart. So what you’re looking at with your father-in-law was probably more focused, understanding his behavior and responses and symptoms is probably frontal lobe dementia, which of course gives a lot of disinhibition and lack of control. So basically frontal lobe dementia, dementia itself causes plaques and tangles in the brain and stops the brain sending messages between different brain cells that do certain things. So you may reach out and grab a hot cup of coffee, your hand has nerve endings in it that tells you that the coffee is hot, it sends a message up your arm to your brain. Your brain then sends a message to the cell in the brain that remembers what the word “hot” is and then sends from that cell another cell that says to your hand, “Move your hand away before you get burnt.” Now that happens very quickly. In a person who lives with dementia, it maybe some time before the memory cell in the brain that contains the word “hot” and the memory cell in the brain that contains the movement and the feeling to move the hand away are disconnected because of plaques and tangles and they’re unable to move their hand off the hot object because they don’t recognise the pain or it’s a delayed response because their brain hasn’t told them to move and that memory does no longer exist as a connected part of the human brain. So in your father-in-law, his memory and his moral norm and culture of being a pastor, being a person, keeping things downplayed, hidden, don’t swear, don’t say rude things, be respectful – this connection in his brain probably no longer existed and therefore I’ll be blunt everybody saying “shit” and the F word and the C words and they fall out because the disinhibition prevents him from holding back from doing it. So it’s just an expression of language and a use of words and it’s whatever words the brain is being able to find to come out that map that expression. So that’s probably where it comes from and that frontal lobe dementia works and that’s specifically right. When we look and deal with people with dementia and people who live with dementia, we look at specifically managing their day to day activities of daily living and how they respond, and gel or settle in their environment. It’s really all about keeping a person calm, less agitated and in a nice space. I call it the “Hmmm Space” and we do this by learning a lot about the person. The more we learn about the part of that person – their likes, their dislikes, how they do things, the easier it is to set up and plan environments and care that best suits them and makes them more comfortable and relaxed. So I would say during his process of dementia and this is my experience through researching people with it, is they become very fearful and they become very scared of what’s happening to them and they lose the ability to be able to communicate this fear and therefore, they express it in behavior. Now people call it “challenging behaviours.” It’s what we used to call it, people call it “behaviors of concern”, “bad behavior” but really, it is just a responsive behavior to an environment, to an action, to a taste, to a smell, to something that has triggered off this individual who lost the ability to tell us what they’re thinking in a cognitive space so they behave or they speak in a particular way. And as I said whether or not it’s related to his congestive cardiac failure Bron, probably, but autopsy would have helped that. Unfortunately, we don’t know enough around the connections with these in dementia at this stage and we need a lot more money into the research so we can connect these things and work in society through the window of science to help make these things better, prevent them or stop them altogether. So I hope that answers your question.
Bron: Thank you.
Amanda Lambros: I have a question. I’ve had someone in our family who, as a mental health provider, I step back, I look and I go, “Absolutely, a 100%, this person has dementia. There’s no doubt in my mind, take the person to a doctor and just have it formally diagnosed.” So an example of what’s occurred is we went over for dinner one night. This particular aunt, she’s there with all of us and then she goes, “You know what, I’m not really feeling good, I’m going to go lay down.” “Okay great, go ahead.” She lays down probably about 20 minutes, comes back into the room after her lay down with an extremely concerned look on her face because she doesn’t know where she is and she doesn’t recognize anybody who’s around her. So she woke up where she doesn’t know where she is, she walked around in her own house that she’s lived in for 40 odd years, doesn’t recognize it and doesn’t recognize anybody in her presence. Now I recognize that as “This isn’t right. She’s not under stress, she is aged.” So I kind of made a comment to the children of this aunt and I said, “When was she diagnosed with dementia? Because I kind of would have already assumed that if it got that bad, you would have brought her somewhere to manage this.” And they said, “She doesn’t have dementia.” So for me, I think what becomes problematic is that when people definitely in the Booming Generation maybe doesn’t want to recognize that somebody is in a situation that requires a lot of help. So this particular aunt still drives, still has her keys to her car, she got in her car the other day and drove two-and-a-half hours outside of wherever and then landed in a gas station and has a phone, but doesn’t know the phone number to the phone and doesn’t know anyone on the phone if that makes sense and says to a gasoline staff, “I don’t know where I am and I don’t know how to call anyone,” and yet still has the keys to her car.
Dr. Drew: Alright. So when I hear that question, I understand the scenario. There’s a couple of things that I want to get out so the listeners and the panel understand. Not necessarily is it always dementia, particularly with an older person.
Amanda: Sorry Drew, I’m going to add one more thing in. The family then went after this concern went and had a brain scan done and went, “Oh well we’ve had her brain scanned and she’s fine therefore, she doesn’t have this.”
Dr. Drew: Okay, great. So when I said before, early detection and diagnosis. So a couple of things, the earlier we get to diagnose, the better. The only formal way you will find out about having dementia with the GP, with a specialist team, we’re looking at it is to undergo an MRI, so not just a CT scan, or a brain scan or a CAT scan, you need to actually have an MRI. One of the problems with an MRI if you’ve ever had one is they’re very small, tight, confined spaces. They make a lot of noise. If you’ve ever had one, they’re quite confrontational having an MRI. And so when an older person that we suspect may have a signs and symptoms of dementia, to put an elderly person, particularly an elderly person with chronic disease into these devices to get the MRI done, you will have to chemically restrain them. Give them a drug to sedate them to put them in. One of the things we know about the science is that there’s a very, very high risk of that chemical drug is going to increase the onset of dementia and make it worse. So of course, once we get up to that later age and late stage, we prevalently don’t use these devices to get a diagnosis. We like to use it when they’re younger or in their 60s and so forth when the first signs come. So get the MRI early when you’re able to get the right diagnosis, but if we can’t, we then step back into other assessments. Now I was trained and taught around dementia by a world expert, an Australian nursing woman by the name of Professor Jenny Abbey, who wrote the Abbey Pain Scale. And Jenny often says to me as a junior nurse when I was working with her and the cohort and mastering into doctoral work, she said “All nurses and carers, and people who have dementia Drew must make a specific choice. Are we going to dance or are we going to wrestle with the dementia?” And I often wondered what she meant with that until she released me to be able to or I worked around people with dementia to how to work with what that meant. And it is, you make a very sincere choice as a person who’s associated or connected with a person experiencing dementia or probably not dementia, are you going to wrestle or dance with it? So first and foremost is, if you see signs and symptoms or things that are sparking you, it may necessarily not be dementia. It could be also a urinary tract infection, constipation, a medication, a change in diet. Remembering all the discussions we’ve had today, the older people change, their pathophysiology is very different as we age, our pathophysiology changes as well. So urinary tract infections cause a clouding of our brain, memory loss, confusion and if we can treat and manage that urinary tract infection, there’ll be no signs and symptoms of these things and they can crack on as a normal person who doesn’t have dementia. So we need to make sure we’re getting good clinical assessment, good observation and good reporting and make sure we’ve got experts looking at it and undergo all the testing to make sure that it isn’t dementia and that could be something else that’s contributing to the memory loss, and the confusion, and the disorientation and we can address that and ameliorate it through other methods. Now when it comes to communicating or asking or touching on these subjects, I often teach much the same as a woman in America called Teepa Snow, but it’s all about communicating. People with dementia and people who live with the signs and symptoms of dementia really need proper communication because it’s the communication, it’s the key to unlocking their potential to be as normal as possible and to have the environment that they choose and want control of. So three simple areas to think about communicating. The first thing is “24 hour reality orientation” and that’s when we’re suspecting anything wrong, we introduce, we ask questions and we talk about things in a 24 hour reality orientation, “What’s the day?” “Hi Amanda, it’s Wednesday, it’s 7:30 a.m. and it’s a cold winter’s day outside.” So straightaway, I’m talking and communicating about the time, the place, the day, the weather and reality orientating my person to the reality of life so that their own brain, in their own way starts to hear and think and go, “Wednesday? I thought it was Monday.” “It’s 2018 Amanda.” And Amanda’s thinking, “I thought it was 1968.” Then I asked questions, once we start to orientate around reality, I do this a lot of ways like, “Can you smell the muffins Amanda? It’s morning tea, it’s 10:30, we’re having muffins, they’re your favorite.” So getting them used to the smells using their abilities to connect time, morning tea, the lunch, dinner, toilet, bathroom, water – so it’s a reality orientation. Once I established this, the person should then communicate with the other person in reminiscence, asking questions to find out where they are, who they are, what they’re experiencing, what’s your name, where are you. If they may think they’re at school as you said her home of 40 years but doesn’t know where she is. She may be thinking she’s in a totally different place. These questions bring reminiscence. The reminiscence brings memory. Memory tells us that they are validating where they are and what’s becoming normal to them. The third and final stage of this communication, which can work in a cycle, we then work in “validation.” So we agreed to acknowledge that they’re 10, or 12 or 20. We agree that they’re in school or at the office and not at home. We agree the sky is green and not blue and we settle and calm them and then discuss more and use more. It allows us to stabilize and settle the person who’s experiencing it and then of course, I always use the magic that is held inside a cup of tea and a biscuit because there’s a fair bit of magic in that tool. You get someone to help make a cup of tea, you get a biscuit, sit down and have a chat, all of a sudden, you’ll be surprised how that cup of tea, little casual chat, little bit of reminiscence and conversation and all of a sudden, the fluctuating memory loss and confusion disappears and you’re back into a calm state. Never take on the challenge of arguing and fighting with them. You will lose. And never be afraid to make the mistakes in the conversation. As I said before, the thing around dementia is to open and broaden the conversation. Respect and empathy for the person experiencing the behavior and the response and take some time to step back and yes, we can see there may be an issue, but then it may be related to something totally different. The primary objective is to get that person calm and stable, then we can get more out of them and work with them better. Now the last point on this is I need to make sure is very clear to people to understand, dementia is not a mental health condition. It is not a mental illness and doesn’t exist as a mental illness. And I know people struggle with this because they see dementia is affecting the mind and then they fear of foreseeing dementia as a mental illness. It is not a mental illness and it is not classified as such. It is a memory loss conditioning and a syndrome of symptoms affecting the person in diverse ways. So we’ve got to understand that dementia is a syndrome of events, it happens over a stage as I said before, early, moderate and severe, it’s around memory loss and the ability to provide self-care to oneself and it is not a mental illness. We need to remove that stigma very quickly on everyone we talk to when we talk about dementia. However Amanda, you did right. When somebody starts to see difference, we need to engage and start to get testing and the earlier, the better. What an early diagnosis does is allows us to set up the forward planning towards the end stage and taking at some point down the line a palliative approach. I hope that answered your question. Brian, do you have anything to ask me?
Brian Hinselwood: Aside from the fact that I’m totally depressed, well when you talk about all the different things that can happen and all the different diagnosis that people can have, it’s like “Oh my goodness gracious, it’s just mind-boggling to be honest.”
Dr. Drew: And please Brian let me add there with that conversation, can you understand now when for clinicians and people, Bron, Amanda, myself, when we work around the elderly, the challenge is the denial, the challenge is they’re not accepting and owning? And Baby Boomers need to own this space. My book clearly says this in nearly every chapter. As we age, we must own it and we must be sexy and happy about it and we must really push the issue out back into the Boomer population. It’s not all doom and gloom. But mind you, it has some stuff that really sucks, but there’s also some stuff that doesn’t suck and we need to focus there too.
Brian: Yes, I’m going with the stuff that sucks. My question Drew is that you mentioned earlier on about if you don’t have a plan for dementia, dementia has a plan for you and therefore the earlier that you can get diagnosed, the better for everybody – for the patient and for the doctors and clinicians and the family. When do you suggest people go to the GP? If that’s where they first go to get “tested” because you can’t have everybody over the age of 60 and suddenly, turn up at their GP and say “I want to be tested for this.” I mean the medical profession couldn’t cope, most people obviously aren’t going to do that. Is there a timeline? Is there a trigger or whatever where people should go? It’s like Amanda talking about this aunt in the family. Yes you would think at that stage you’d be going to see somebody and having all the tests that are available. But when you say plan for it, you can’t plan for something that you A: you never get or B: might not get.
Dr. Drew: So when I talk about planning, I talk about it in a context and as I said, there’s a great video I’ve given a link to for all listeners on the Booms Day website to Dr. Drew’s website, but you can see I’ve got six tips. The first thing to understand is that most GPs when you go and see them – general practitioners, medical doctors – will automatically be screening and categorizing certain things around your health and wellness. So there are indicators that tell us stuff around a person who’s a patient. Some of these stuff adds up and we start to undertake other assessments and specifically I know in Australia we do this under chronic disease management, but everyone over the age of 65 starts to undertake certain tests that we check, like for example at 50, everyone has the big bowel test. You go and get your bowels tested for cancer. It’s the same with the process for dementia. Dementia has now been recognised globally as one of the world’s biggest impacting diseases and of course, we now have different screens and tests that people in clinical spaces will undertake. Doctors will also undertake certain little exams and tests with their own patients by asking them questions, testing their memory, asking to do refractions or count back from a hundred by fours, count back from forty by twos and things like this and questions that we use. There are screening tools and assessments such as a RUDAS or an MMSE, a mini mental test that we undertake and this is more about the clinician and the patient being more open with each other to be able to have these things and talk about these issues rather than not have them done for fear and stereotyping. But first and foremost it’s the person, the patient should be asking for them, anyone over the age of 65 should be always checking with their doctor to make sure there are some very simple screening tests that he can undertake to test memory and cognition. It’s not a big thing to ask. You can ask your local practice nurse, your community nurse to do this and many healthcare experts are quite adapted and trained now in undertaking these assessments. It really begins with the patient or the person to be conscious of the fact that as they age, they may be subjected to the impacts or the signs and symptoms of dementia. And when I say “plan,” it’s about changing the aspects of healthy diet, activity, changing the environment, putting things around the house because the dementia also can come and does come when people start to isolate – they don’t move enough, they don’t eat enough, all of these things impact that could trigger off or start the dementing process in the disease. Now we don’t call the people “demented” per se anymore, it’s old language and patients do not like it, so we call it people with dementia or people experience or living with signs and symptoms of dementia. Now people in general should all have themselves checked, undertake any type of specific or quick test they can, be conscious of your own memories and abilities. But then also in the planning, have a “Plan D.” D for Dementia. If I got a diagnosis, how would I plan my life around dementia? Now in my six tips, they’re very simple. The five tips is first is understand the disease. Start now understanding, learning and reading and understanding dementia so that if you ever did get a diagnosis of it, you are prepared to understand what it is, rather than get a diagnosis and not even know what it is, which is quite a scary impact for the person who gets that diagnosis. Another tip is that start talking, communicating on identifying that this is a terminal disease you’ve got and it’s got to progress and get worse and so you have to own it and you have to talk to people, you have to bring people into the circle of influence and talk about how you’re going to plan. Plan to join and belong to a society of other people who are connected in a dementia group, plan to have very open conversations around planning with your nurses and doctors over this disease, plan your end stage very well with advanced care directives things like do not resuscitate or transfers and separations into or out of homes or dying at home with dementia. And there is a lot we can do to plan our life, particularly if it’s a diagnosis of dementia but particularly, it’s around ageing and frailty because they will lap over. But the biggest thing to understand is do not have a fear of this disease and own the fact that we are susceptible to it. It will strike anybody and the more you do understand about it now, the more planning you can put around your cognitive thought and your emotional intelligence will help and support you by the time if you were to be given a diagnosis, you’d be a lot better in spot or in a place, a lot more stable to help deal with it. That’s how we do it Brian.
Brian: Can I just say that if you were to read all the information out that’s out there about it and then you’re unfortunate enough to get this disease, it isn’t part of the disease the fact that you’ve forgotten what you’ve read?
Dr. Drew: Yes, of course. So at some point down the line though, you’ll forget everything Brian. My point is that you’re reading about it, you can start putting plans in and then if you have forgotten about things, you’ve got those plans written, they’re drawn up, they’ve been discussed with family. I still today are flabbergasted and perplexed that when I’m asked to come in as an expert and a very experienced person in dealing in these family scenarios, that I’m still dealing with many people where their siblings, and loved ones, their husbands and wives are sitting there telling me they have never had these discussions with their loved ones. They have not talked about it, “Oh no, it’s not a discussion we would ever have. Dad’s never told us anything.” And what happens is unfortunately with dementia because it lays very slowly in the body until it progresses, people then identified it quite late stage and we’re too far gone down the track to get anything done. We’re unable to understand the wishes and demands of the individual who has the disease and therefore, this responsibility is left on other people’s shoulders and they’re probably making decisions that are not what the other person wanted and then we extend out that influence to grief, and loss, and guilt and a whole lot of other psychological and psychosocial problems that have to be dealt with or they become hurtful and stressful and they bring stress and they bring suffering. Now they’ll often tell you people with dementia don’t suffer. Now I’ll tell you very clearly, I disagree with this and I can tell you very clearly that the evidence in the science is categorical, empirical and tells you very clearly that people with dementia suffer, particularly in late stage dementia, particularly when they’re not getting the best care. Now the biggest voice in dementia at the moment comes from the people who have early diagnosis or their first stage of dementia – they’re speaking, they’re vocal, they’re in the Dementia Alliance and I think it’s great space. But we must all understand, do not build new stereotypes – people with dementia don’t suffer, they don’t do this. At some point down the line, those people will be suffering if they’re not in the best care and we need to own this. There is a great Facebook site you should go to, everyone should go to, is called “Mother and Son’s Journey with Dementia.” It’s an open Facebook Page for people experiencing and living with dementia and their loved ones. They put their videos, and podcasts, and their stories, and their tears, and their cries and their debts up everyday. It’s quite confrontational stuff but I absolutely love it. I’m well in there with everybody around the globe who does this and they show you very clearly the challenge that this disease brings, the pain and suffering it has, but they also show you the beautiful part of it, the beautiful part of human beings, the connection they have with their loved ones and the reality that this disease does not have to be a wrestle and it’s not all negative. However, it is a terminal disease that we have to learn to cope with at this stage because we do not have enough science to cure it yet. Wayne?
Wayne: I’m intrigued when you say that dementia sufferers suffer. What does it feel like to have severe stage dementia?
Dr. Drew: Well I personally don’t know because I don’t experience it. It’s very hard to extrapolate this information from a person who has it. The information and the data we have comes from clinical observations of the signs and symptoms. But what I do understand is the work that I do around people who are in the early stage to mild dementia, when I’m able to ethnographically study them, sit with them, ask them questions, get into very good question answering techniques with them – that data they give and the correspondence I share is predominantly around their fear when they can’t remember, their fear when they can’t do, their anger and anxiety when they’re unable to complete things, remember things and it’s very centralized. Of course, once that disease progresses they no longer then have or able to express that fear, but what I do understand is they still have it, they still are feeling it, they still are themselves. They often say to family members, I had a daughter recently came to me in tears in a nursing home crying and I asked her and I said “Are you alright?” She said to me, “Drew, I just sat with mum and she said to me, “What’s your name? And I said to her my name is Diane and she said oh I have a daughter named Diane, she never comes to visit me.” She said, “Drew, mum doesn’t even know who I am” and the tears in the daughter. Now the process is for me there not to deal with the client, it’s to deal with the clients loved one because their clients loved ones are going to play a very big role in communicating with that client and that the mother is expressing that she doesn’t know. To tell that mother that “I’m the daughter” is probably going to upset that mother more. To tell that mother a story, to love, and cuddle and nurture her, let her to know that I’m here, she sent me because she can’t make it. Eventually, it’ll come to fruition that she is the daughter because that physical connection, that trust, that love, the communication will connect with it anyway. Lay on the bed, have a cuddle, but not to feel terrible for yourself as the daughter and so upset your mother can’t remember you. Your mother still is there. You have to find her in that dementia space. Go with the memory and bring the memory to the table or the bed space, touch, connect, wash, music, smells, reminiscence, orientation. Eventually that human being the person that’s stuck in that dementia space somewhere will pop out, they will wake up, they will come out and connect and those moments are beautiful and brilliant. It really is about when keeping that person in a very calm state. There’s a doctor named Emma Knopf who comes from Israel who heavily researches this area and writes a number of very good peer-reviewed papers in this. He’s designed some tools that allow nurses like me to assess whether or not the person is suffering from the dementia and the care and allows us to set up environments and care programs that ameliorate or make better, take away the suffering and calm the person. We need to give that person with dementia at that late stage a very calming effect and a calming environment. But some of the things you will see them do, perseveration is very common. The repetitive behavior, dududududu, yoyoyoyoyoyo, buh-buh-buh-buh-buh, pointing, fidgeting, this is because the needle gets stuck, they’re actually having full conversations in their mind and space but the words being used coming out are not the words that we’re hearing. I have many cold people, culturally and linguistically diverse people that had this conversation with me where their mother being Italian is speaking and I’ll say “What’s she saying in Italian?” They will look at me and say, “Drew, that is not even Italian.” But yet mum is having full conversation in language which is her Italian at the time and the family is getting more frustrated. The trick to is not to get frustrated and create an energy, creates some bigger energy with the client is to find and connect with that person – their likes, their dislikes, their wants, their demands, their space, their recognition, their memory, wherever they are and work with it, make it calm and make it beautiful, and passive and gentle. And you will provide that person with a very soft journey or softened journey or more like a dance rather than a wrestle with the dementia until the end stage. Of course once they are end stage, more abundant close to death and in a bed or better wheel bed chair or chair bound, it’s of course all about the care, and the love and the nurturing.
Wayne: How common is it for a dementia sufferers to just be sedated?
Dr. Drew: Well first they’re not dementia sufferers. So they’re people with dementia and it’s very common that we over medicate them. So one of the biggest things in the society around Alzheimer’s and dementia works is we are removing medications very quickly because what the science is telling us very fast that they are bad. However in the geriatric medicine space, some of these medications are good and need to be used in what we call a “titrated or a mild dose” and the biggest impact we’re seeing is antipsychotics. For me, as a doctor or nurse in geriatrics, I don’t like the medications. I much prefer CAM (complementary alternative medicine), massage, water therapy, hydrotherapy, walking, activity, sandpit, doll therapy, pet therapy, aromatherapy, heat packs, cold packs, acupuncture, a whole range of other things which I know the data on this is absolutely evidence-based and stronger than anything else we have that says this works. Medication works worse, it’s the trials and the research is full of bias and you clearly understand as a person clinically working with people who have dementia that medications have a massive impact unless is best let me tell you. Remind you Wayne with any person heading towards the terminal phase of their life, the less medications being used, the better, other than pain relief of course.
Wayne: What if my dementia plan is just to be medicated?
Dr. Drew: If that is your dementia plan is to be totally medicated, then that’s a pathway you construct with your professionals and they will be quite happy to construct that pathway with you. So I would leave that conversation from me with your general practitioner and medical specialists but I’m sure that you would be able to construct a medication regime that would keep you in a very calming state with less agitation and no problems throughout that journey Wayne but you would have to make it very clear, that’s part of your planning process and that has to be then we’ll discuss with family who you as an individual are also asking others in your closed life to watch what you’ve decided is about to happen.
Amanda: Now Drew just on that point, I have a bit of concern here because the dementia plan thing is newer like it hasn’t been going on for 20 years. We believe 20 years ago, we didn’t say we all need to have a dementia plan. Now it’s in our vocabulary of like, “Do you have one? Have you started thinking about one?” That kind of thing. So I think moving forward, it’ll become more and more accepted. I think the problem that we sit with currently as Baby Boomers and the people who are listening to this podcast is that they may not want to recognize that their parents or themselves have dementia. It’s still that stigma.
Dr. Drew: Yes. And as a mental health practitioner Amanda, you’re well aware of this as much as I am. I’m an Ambassador for BeyondBlue in Australia and it’s the same message, “Remove the stigma.” We need to very strongly as a community, as older people, as leaders in the communities to start removing the stigma that sits around not only mental health but around dementia. Get rid of these negative thoughts and start to teach and educate people to own what this is to understand it can strike anyone, it happens to many people and it’s something we need to remove a stigma from real fast because that stigma itself like other mental health issues and mental health issues is it stops people receiving the best treatment and care and we’ve got to remove those stigmas because it’s wrong. We’ve now been busy as a society removing stigmas around gay, lesbian, bi, transgender, Islam, all these other phobias, we run so prominently speaking loud about. But I’ll tell you what annoys me and I’ll say it and that the stigma on dementia and the way we treat people with dementia and what we think about dementia as a society needs to change more rapidly than anything else and mental health. But I’m going to focus on dementia today and that is if we want people to have a society where we do love and respect all people, then let’s start loving and respecting dementia because as I said, informing and supporting assessment and directive and the way we go is what’s important. Someone that you know now, I guarantee will have dementia. More than likely, pick four of your friends and two of you are going to have dementia in the next 20 years.
Brian: Drew, from just using a very basic thing about 2 of my 4 friends are going to have it, you’re talking about half the world’s population, isn’t it?
Dr. Drew: I’m talking about half the Baby Boomer cohort, so ageing population because young onset dementia exists which is terrible. Young onset dementia is phenomenally horrible. But older people, remember the cohorts larger. So at the moment, we’re 1 in 4 as that larger cohort they are the 85 year olds and above now as all us Boomers and the bigger cohort of people move up towards 85, more of you are going to have it. We’re not getting dementia, it’s more people who are ageing will get the dementia because currently the cohort of older people is less. When the current Boomers move to that older cohort, there’s going to be more of them hence more of them will have a diagnosis of dementia.
Brian: Gotcha. Okay, that makes sense.
Dr. Drew: But the more we know about it now, the more we can get,hopefully, our millennial generation and those coming behind us will evolve the science, get into the science and fix this terrible disease, get rid of it. It needs to be worked out, understood and gone because for me and I know I cause agitation when I say it to my colleagues within the industry that like to pump the best language, I get it, I fully understand it. But I will say very clearly, everyone that I know, touch, feel and work with that on a personal basis with dementia has at some point experiencing a suffering, and a pain and a terrible experience with his disease. Until we are able to get them into a nice environment of management, and understanding, and informed and getting to work with it better. So I think the earlier we do this, the better and we really have to own it as a society, it’s not a nice disease, it’s a terrible thing to watch happen to a loved one and to experience. So we need to make sure we’re active in getting rid of its stigma, we need to work clearly because we can manage it well, that’s the issue at the moment. We can’t cure it but geez, we can manage it well and I tell you particularly in Western societies, we do a very good job of managing it when we get a chance and the funding to do so.
Amanda: And I think it’s really important Drew that like at the start, you made a very clear distinguishing comment of it’s irreversible, it’s progressive and it’s terminal. And I think people have to be really, really well aware of that it’s like okay if the diagnosis comes or if those symptoms start to appear, they’re not going to magically go away. You can’t take whatever pill and it will magically disappear, it will be irreversible, it will be progressive and it will be terminal.
Dr. Drew: I was asked the other day Amanda, the person said to me, a client, “The doctor said I can take this tablet and it’ll fix my dimension blah, blah, blah.” Now, he’s talking about a specific line of medication which is what we like to treat doctors. Medical doctors like to treat patients with it in the early mild stage. The medication actually softens the impacts of dementia. At some point generally after 12 months or 2 years, a medical practitioner will see that medication because once the progressive disease gets in down line, that medication will have no impact on the cognitive ability of the client. So there are drugs available that doctors will use in the very early stage to soften and it could give you a mild effect to the dementia impact but it won’t last long and as you say, it’s terminal, it’s progressive and it’s going down a pathway that we really must understand because it affects every single person differently. I have never had, “Oh yeah, this is dementia, this is how we deal with it.” Never and I’ve been dealing with it for many years. Every patient I deal with, every client I deal with is different in many, many ways and they are all experiencing it differently. They never experienced it the same. Sure, I can pick up perseveration, object agnosia, motor dyspraxia, apraxic conditioning, disinhibition. I can pick these things up but the lived experience or how it affects individuals is extremely on that individual – their life, their likes, their dislikes, their history, their level of comedy, there’s so many things that influence each person who has dementia.
Brian: Okay. So Drew, why don’t you leave us with uplifting thoughts? I saw an article from one of the local news stations I can’t remember which one the other day that scientists I think in Queensland University but it could have been some other university and I’m sure it’s a number of universities working together are in fact developing drugs as we speak that will if not reverse it, then stop it at whatever level it’s at. Now is this true? Is this some fantasy thing that channels something or other came up?
Dr. Drew: Brian, as the science evolves and as we learn more and get more data, I can assure you they are closer and closer to getting a cure for certain aspects of the syndrome of disease. Remember, dementia is a syndrome of events and diseases so it’s not a one-size-fits-all thing but as we progress through the silence, slowly we are coming up with better medication, better therapies and better ways of positively attacking the dementia process and removing some of the syndromes. I have no doubt that not far away down line, some smartypants will find a cure for this or if not a cure for Alzheimer’s or a cure for Huntington’s or Parkinson’s or things that create the dementia and bring us the dementia and I am very optimistic this is going to happen. It won’t happen fast enough if we just leave dementia sitting on the shelf as something not to be discussed and talked about, it needs to be out in the public domain. I’ll end with a positive note to have people understand: yes, it’s a terrible disease but we need to have the tendency for older people to be less marginalized or discriminated against so we need to understand dementia and living with dementia can be as positive as it is negative and it’s up to us to build strong positive environments and support the people in our community who’ve been diagnosed with dementia and it’s important for the people with dementia to understand there is a positive way to live with dementia and don’t let go of that thought.
Brian: Alright, I feel better now.
Wayne: And while Brian is feeling better, we should finish the podcast. This is Booms Day Prepping and as usual, we’ve been in discussion about issues for Baby Boomers and today we’ve be talking through dementia. To our panelists, Bron Williams, Amanda Lambros, Brian Hinselwood, and in his absence, Glenn Capelli, thank you for sharing your thoughts and time with us today. Dr. Drew Dwyer as always, our co-host and resident gerontologist, an expert in these matters, thank you for being with us today and leading the discussion. My name is Wayne Bucklar. And if you are listening to us on social media, please remember, we love your feedback – click the buttons, the likes, the frowns, the smiley faces, the comments and if you have questions, pop them into the comments on any of the social media, we monitor them all and we’ll get back to you either on air or directly in person. My name is Wayne Bucklar, this is Booms Day Prepping.