Free Your Mind – Dementia With Terry Scaife, The Reality Of Dementia

Hello and welcome to this week's Free Your Mind. Let's talk about it with LKJ. This week's show again is a very sensitive show, a show that will affect many people because of the word dementia, what it means, how it affects people's lives. What is dementia? Dementia is actually an umbrella term used to describe a range of progressive neurological disorders, that is, and conditions affecting the brain. There are now over 200 subtypes of dementia, but the 5 most common are Alzheimer's disease, vascular dementia, dementia with Lewy bodies, frontotemporal dementia, and mixed dementia. Some people may have a combination of different types of dementia, and these are commonly called mixed dementia. Our brain is actually made up of nerve cells known in the industry as neurons. These communicate with each other by sending messages. Dementia damages the nerve cells in the brain so messages can't be sent from and to the brain effectively. This prevents our bodies from functioning normally. But regardless of whatever type of dementia that we or our loved one is suffering from, the part— whatever part of the brain is affected because we are unique, is that they will experience dementia in a different way. Dementia now is a global concern, but it is most often seen in our wealthier countries where people are likely to live to a very old age. The Alzheimer's Society reported back in 2014 that there were over 850,000 people living with dementia in the UK today. Of these, approximately 42,000 were people with young onset dementia. As a person's age increases, and we grow older is that we will be affected because in the hardship of this, you know, our risk increases as we get older. We think we're going to be young, we're going to live forever, and we don't take care of our bodies, etc. Et cetera, to that point. But by the time we get to 2025, this figure will go to over 1 million in the estimation of this. One good thing is that the rates of diagnosis are improving, but there are many living without undiagnosed dementia. And regarding this, and with the last 2 years of COVID the pandemic affecting across the world with social services, etc., not being able to see these people— people are being missed in the system, which is a tragedy to see. So we're going to touch on this, and my guest this week It's the wonderful Terry Scaife. Terry Scaife has worked in psychiatric hospitals, she's worked with dementia patients, and she's going to open up and free her mind on this show with— to talk about the carers, the loved ones left at home without this help, and her knowledge to go and talk about this sensitive subject on a women's radio show. So hello, Terry, are you there? Good afternoon, Jo. Yes, I'm here. It's a pleasure to have you on the show. And somebody that's worked as a nurse for so long in this industry and seeing face to face, you know, and we are an unbiased, unjudgmental show, so please feel free to let that mind go because obviously you've witnessed this. You've witnessed— can we just start By letting people know, you know, where you came from in nursing. Was you originally a dementia nurse, you know, or was you just, you know, a staff nurse? You know, I know they're all categorised now, aren't they, in different— Yes, I started off back in the '70s, in the early '70s, and I trained as a general nurse, and I worked in all the types of wards in a main hospital and in theatre and so on. And then about 20 years ago, I trained as a learning disability nurse, and I worked in learning disabilities and mental health. And I found working on dementia wards was very challenging but a very rewarding side of nursing, and I made that decision to remain on this side of nursing. I worked on an acute admission ward for long periods, and seeing dementia firsthand, it's a tragic, tragic illness, not just for the person suffering from the illness, but for the families, for the people supporting them. And, you know, I feel very concerned that there are so many people out there, you know, wives, husbands, daughters, sons, caring for people with dementia that have very little, if any, support at all. Yes, there are professional carers that do a wonderful job under difficult circumstances, But I think we need to be thinking about supporting the carers in their own homes, the wives, the husbands, the daughters, the sons. And you know, those people don't get a lot of support, and looking after somebody, particularly in the later stages of dementia, can be very stressful. It's 24/7. You're dealing with problems where maybe the person doesn't sleep at night, is up and down all night. There's a risk that they may walk out of their home. I've seen this. I've seen police bring somebody in at 2, 3 o'clock in the morning that was found wandering. And of course, with dementia, you know, people have an idea that perhaps their little lady's that are a bit confused. But dementia can, depending on whatever type of dementia that's been diagnosed, can really throw off some very unpleasant side effects like delusions, paranoia, depression. And paranoia, this is very real to the person suffering with dementia. And for people caring for them. It's ensuring that they're safe, their dignity is maintained, that they have their meals, that they're warm, that they have their medication. And my, my concern is who's caring for the carers? I would like to see more input from from neighbours. For instance, you know, we had all this clapping for the NHS and showing concern for everybody. I think as neighbours we need to be saying, well, I'll sit with somebody's mother or somebody's husband while the person pops out to the shops, or the wife goes to get her hair done or something. And I think, you know, we're only There is a massive amount of research going on for dementia, but unfortunately there isn't enough. There are some very good drugs out there that have been created for people suffering with dementia, but at the same time we need to think about the carers as well as that person suffering, and that's where I I'm saying to you today, Jags, we need more education, more awareness of people suffering with dementia. So do you think— sorry to interrupt you on that, and I want to stop you on that point. So do you think, although all this research is going on into dementia, do you believe there should be more awareness for the person that is with their loved ones told they're going to have dementia and what they're going to face, how to structure for them to live independently. Because when they're in hospital, they're under your guard because they're basically your husband, your wife, your daughter, etc. What will happen is they become a carer and they are the person that needs to give the support to enable them to live more comfortably with Alzheimer's or dementia, both early and the late stage. You know, and to give their support, because you're trying to allow your parent or your husband, spouse, etc., to be able to live independently in their own home, to still know, yes, we've got to live with this disease till you get to the latter point of the stage, which increases its risk. But it's not just, oh, I'm going to look after Mum, Dad, you know, husband, etc., the person with dementia. You You've got to be helping with their domestic and their daily living tasks, let alone cooking and encouraging them to eat healthily. Then you have the bathroom assistance, which is putting you into a difficult position because if that's your father, you're cosmonauting that it's your dad, you need to wash them, open that, oh my gosh, and you have to be ready to be able to do it. Are you strong enough? Are you fit enough to enable them to— Absolutely, absolutely. You can just— to offer care and reassurance to them, you've got to manage their distressing behaviour, their pacing, their shouting, aggression, like you're saying. So on a hospital ward where you're a nurse trained to do this, that is trained by the doctors to settle and work, and you've had many, many years, about 20 years I believe, doing this, the person at home How can they just— so for you as a nurse to say you've worked it, but you see these people go home and, you know, the coping mechanism at home isn't strong enough. We all believe when they go and they take their parent home or your husband, wife, yes, I can do this, oh, I can do this. But as you say, let's just talk a bit about the physical, the abuse, aggression. But when I use the word abuse, I'm using this word abuse in the fact that the person with dementia can abuse the carer, their partner, because they are becoming their carer. And when people see them, or the person getting tired walking, oh, and they may just say, goodness sake. If somebody looks in the street, they may think, could you see the way that she spoke to that gentleman? We don't know, we don't understand the extent and the pressure put on this person for 24 hours care, you know, and you're talking— when we're saying about 24 hours care, right, we're talking about somebody that has to allow the whole of their life of a week of 168 hours to try and get some sleep out of those 168 hours. But when they're trying to sleep, they're always on guard, always on guard. One eye is open in case they've got up in the night, in case they've gone and turned on the cooker that could cause a fire. So the tiredness that you feel as that carer or that person, you know, which you are exhausted, that you don't mean to reach out to do that, but because there's nobody there to help, there's not enough support. When we look at the Attendance Allowance, the Carer's Allowance they give, the government expecting somebody to do 35 hours a week to receive 70— I think maybe, I think it's approximately £71 a week to do this work that needs special trained people to do it, to help the mind of the person as the carer, the carer who is being trodden down, but because of their love and affection and to make sure I look after them, their own health deteriorates. So yes, I completely understand why you're saying about that, but as I was saying when I just opened up this question about the aggressive and the abuse, you know, so when we've seen that, can you tell me a bit about the abuse that you see that a dementia patient can give to that loved one on the ward, or, you know, just— I really need to open up in this section. Yeah, I understand. You know, in a hospital ward, in an acute admission ward where I was based, patients were coming in that had perhaps been coping at home with support or been in nursing homes or care homes, and their illness was perhaps, uh, exacerbated because they suffered with a urine infection or a chest infection necessitating admission to hospital, where assessment, um, was put into place. And therefore, once the consultant has made their diagnosis Yeah, with the help of scans and so on. Then once the diagnosis was made, that indicated the types of behaviour to expect. For instance, Lewy body type dementia— people can become disinhibited in a sexual nature. That is something that has to be taken into consideration. For instance, We were dealing with a lovely gentleman whose wife used to take him shopping when, at a time, she was able to manage and leave him sitting in the car and go off and do her shopping quickly. And she would sometimes come back and he'd have taken all his clothes off and wandered around the car park. You know, this had to stop. Which made his wife feel more alone, more unsupported, because at least she was able to get out when she could sit him in the car. But it was no longer safe to do that. And there are all sorts of situations, there are all sorts of— people with dementia can be very frightened, they're very lonely at times, they may be suffering with depression. And we've also got to take into account, Jags, that people, because of their age— I know there is a percentage of people that get early onset dementia, people in their 40s, late 30s and 40s— but the elderly over 65, remember, they haven't just got dementia. They may have diabetes, epilepsy, risk of falls, may have suffered falls, Poor hearing, poor vision, you know, this is all so, so frightening for the person with dementia. And to, you know, they do know when they start to forget things and things get to start to deteriorate, and sometimes the person may get a little bit dependent on using alcohol to help them sleep at night. So there, there are— it's a minefield of risks for the person, for the person, for the people looking after them. It's challenging enough for professional carers that come in, but families, there's no break. It's 24/7, full-on. And you've also got— we've also got to think, Giles, of people living alone, and people, you know, professional carers may go into them, and there's also animals to be thought about. They may go into a house or apartment, flat, where the person suffering from dementia doesn't realise he's not let the dog out. So there's a lot to be considered, or the dog hasn't been fed. So I think as a community we need to be helping more. We need to be able to say to our neighbours, look, I will come and look after your husband or your wife, I'll sit with her for a couple of hours. Having said that, we have to be aware too of abuse. For elderly people with dementia. Not just physical abuse that a person suffering from dementia can exhibit themselves when they become frustrated, when they become annoyed, angry about something, they can lash out. We've also got to worry about people's financial— people with dementia, their financial situation. Families need to look at power of attorney, making sure that all their personal financial business is put into place. And I knew of a situation, a friend of mine whose mother— somebody knocked on the door and said, I've come to cut your grass. So he went and mowed the lawn and she paid him, and over a period of months he kept coming back to do our jobs, and she was paying him several hundred pounds at a time. And when her daughter found out what was going on, you know, she waited and spoke to this person and said, don't come back on our property, I will inform the police. So, you know, abuse can be in many forms. To the person and from the person. And when you're dealing with somebody that is very, very confused, maybe agitated, you can't reason with them. You have to wait. And for instance, you know, if somebody's been incontinent, you cannot say to this— always say to the person, 'Come along, let's go to the bathroom, let's have a shower, let's change your clothes.' That's sometimes not possible because the confusion— we've got to think of the loss of their dignity. So it's waiting for that moment, and having training and awareness does make it easier. But for the people outside that are living in their own homes be it a mansion or a flat or whatever. Those are the people that need the support, and we as a community should be helping them. And it's, it's again, Jag, it's through education and awareness that we are going to get this illness. Yes, if I can just, um, go over a few points that you said there. And, you know, as the news— as a news reporter myself, I've seen many things that happen. And a decision you have to make, the right decision, when you leave that hospital: are you able fully and understandably to be able to deal with this? It's why we have certain nursing homes and everything. We're talking about abuse. You know, there was a case about a lady that had been a resident of a care home, and her family put her into the care home because they felt that this would be the best thing. She would have to be like going from hospital to there. They'd be able to visit. They would still be their mum. They would try, they would visit, and for their reasons they did this. This lady— and they'd seen their mother deteriorate. And every time I go, I think, you know, this isn't— she's not looking well, wondering whether or not they had done the right thing for her. So they actually installed a hidden camera in her room, but what that hidden camera caught was not her mum crying that she missed her family. They were going— that camera recorded abuse. That camera showed a 94-year-old lady who had advanced dementia. She was obviously very vulnerable, but this footage that came out where a family had entrusted their elderly mother with dementia in this home, okay, um, and to watch your mother being mocked and taunted frightened and showing her where she'd had bandages wrapped around, you know, for— it was meant to be to cover her open sores, obviously, you know, there's questions on that that obviously were answered, but instead of, you know, seeing to her dressing, they wrapped that bandage around her head, around her head, right, instead of caring for her, they were abusing her. And when you're watching and the trauma, the mental health trauma, even now, that family had suffered for the abuse of being put into a trusted place where they saw their mother crying and everything. Okay, the Distort. So where do they go? Who do they find? Who do they look out for? What I can say to the listeners, those people that care home was closed down, okay? And 4 care workers that were captured on there were prosecuted, and they were given a lifetime ban from ever working in the care sector. But that, for me, isn't good enough. That poor innocent person, when you've left hospital, when we're doing occupational therapy and, and they're coming in looking what's best. This is what's up. But I must clarify, so this is not— not, you know, it doesn't mean every place that you're going is like this. You don't know, we don't know. That's why it was a hidden camera that found that. But there are different reasons why we do that, because there is abuse, so much abuse in there, you know. Um, you have on another angle let me, you know, look at doing that, you know. Where you're saying about the financial stuff, etc., that's going on with that, you know, another case, you know, for myself, when I look at doing these shows and doing research and speaking with someone as highly professional as yourself, I have to bring myself to the same platform. To truly understand this, although in reporting side I do. But when you actually go into this and you actually see what dementia is and opening up, you know, when we're saying about abuse, you know, another thing I came across was a lady who had been experiencing severe psychological and financial abuse at the hands of her son. So we've had this from a care home, we've had this from a son. He used to turn up at her property demanding money, and on one occasion took out a knife and threatened to kill himself in front of her unless she gave him £300. You know, that person with dementia then has extra struggles to get over her experiences that then becomes trapped. You know, loneliness, isolation. And due to her caring response, they give up, they just hide at home, and rarely left her home. But there was somewhere to go out, you know, she did reach out because of a neighbour. A neighbour knew of an organisation and put her in, and they came in and helped them. You know, this is stuff You know, that does happen. Yes, and that does happen, and it's very sad to know that there is abuse going on. There are very, very good care homes and nursing homes out there, and it is about training and education for members of staff, and that is the only way that we're going to succeed in giving the best care to people with suffering with dementia. It's the people that are on their own in their own homes. Yes, there are professional carers coming in to help, but dementia, the effects of dementia, it's a cruel, cruel illness, not just for the person suffering it, for the family as well. And dementia fractures families. You know, I've seen it so many times when people blame each other because they fully— they don't fully understand why Grandpa isn't behaving as he normally was, why he gave away all his paintings in his sitting room, why he was wandering late at night in his pajamas. They don't understand. But this is where, you know, we need to be more aware, more education for people. And I've seen recently, you know, in the media, there is— it's happening, it's happening. Albeit not quick enough, it is happening. And that is so much what we need. And we need to be able to help our neighbours. Are friends with somebody, they're caring for somebody with dementia. Remember, it's a 24/7 job. As a nurse, you could do your 10-hour shifts or your 7-hour shift and you could go home. Your colleagues took over and you could go home. And dementia, whatever setting, whether it's a hospital ward, an acute admission ward, a long-term ward, a nursing home, a care home, or the person's own home, it's a challenge. It's a challenge for the person suffering, their families, and for the people looking after them. And I am saddened, I am saddened to hear of— every day you hear of abuse to people with, um, suffering from dementia. And until we have more awareness, more education, this would keep happening. Yes, well, on that note, a promise was actually made by government to double its funding for dementia research to help bring an end to a long and desperate wait for new treatment. With that vow came hope for everyone affected by this. This is to bring the treatment to help them with medication. Dame Judi Dench herself has now called on the government to fulfill to fulfil the promise to invest in dementia research. But again, what we're asking— yes, great and wonderful, thank you, actually, Judi Dench has such power, you know, for going in this, and we lost the wonderful actress Barbara Windsor to this, you know, and, you know, just in that world, so lots of people seeing this, her husband Scott, the caring side, etc., that was on there, for going in. But, you know, when the Conservatives made their election victory, their election promise was to double its investment in dementia research to over £160 million a year, but there's been no further commitments made publicly and no strategy outlined for this. I understand we've had COVID, etc., that's been in there, but from this £160 £60 million that I'm asking the government. When you are saying, I'm going to help somebody with dementia, I'm going to help, like Judi Dench says, call on, you know, where is this money, where's it gone, show us where this is going. But why isn't this funding coming through as well? Rather than government paying somebody £71 for 35 hours a week, you can't get a carer. To work for £71 for 35 hours. It, you know, we have to work by a minimum wage. If you're that person that is at home that doesn't have that contact with a neighbour to help who understands fully and the risks that they take when they enter your property to care for them in case they go out, to work with you slowly to do that, is we have to rely on free free hourly care. That free hourly care is that, that can enable you for your own mental health awareness for an hour. And it's not wrong to go out and just have that simple hour break just to feel you have respite. You know, there are organizations out for respite, and you're doing no harm to your parents. And you haven't failed if you give that one hour where you would care for yourself. Some people do feel, I can't do that, it's my duty. But you also have to be strong yourself to do the caring and everything that's in there. So as my point is, you know, and we're looking at the caring side, and look at these people coming in, and we're focusing quite a lot on that on this show, is the Chancellor's put up the daily living wage. But you know, you may need 2 people to lift, 2 people to wash. So when, as the elderly get and their skin's a lot thinner, where they can get bruised, if they bruise easy and you're trying to lift them, somebody could accuse you of of abuse, which is incorrect. You know, it opens up such a massive field to go around in. So my thing is, I do— I'm completely with you, Terry, on this, that there should be more support, more funding. Yes, it's means tested. So you're means tested and how much money you've got, okay. And so, or you can have carers' allowance, you can employ somebody to come in if that person— but they've got to earn about something ridiculous like under £125 a week to be able to get this care, or they take off pound by pound, so I'm informed. You know, they've got bills to pay, you know, where does this equate? If you need 168 hours, which you do with somebody with dementia, or you have to put your parent or that in if you cannot cope because you've got to work, Do you stop working? Your financial— the heating when you're at home, the cost of having extra heating on. There should be a lot more support for dementia, and my call out is for the government to look at this. I absolutely agree, Jags. If money comes into this, and you know, current government has promised more money for funding for research, well, You know, we've not heard much about it. It was, you know, election promises. Has it happened? We've not been told. And I think, thank goodness for people like Judi Dench, who has a platform and is able to bring attention to the needs of, you know, people with dementia and the, you know, the need to have more awareness and more involvement from the government. I mean, professional carers, they don't earn very much. They only earn the minimum wage, and they do a fantastic job, and they're out there from early in the morning to late at night. And I'll give you an instance of a professional carer, one of many that I know, who goes into this gentleman every morning he's in bed. She will go in about half past 7 and he's in bed, and he's not always keen to get out of bed, and there's a lot of coaxing and, you know, a lot of time to get this gentleman— and there's also the dog to take care of, the dog to let out in the garden, and so on. And there's also issues around because he might have forgotten to let the dog out the night before. This carer is walking into puddles all over the place. Now, she's not there to clear up the puddles from the dog, but because this woman cares about this man and cares about the little dog, she will clear up the puddles. And sometimes it's more than puddles. And again, I think, you know, the government They don't really have any idea what people go through, what it's like for families, for a wife or a husband or a son or a daughter to be looking after somebody who is cognitively impaired, who is lonely, frightened, can be angry, can be aggressive. They've lost all their life skills. You know, I remember a patient once saying to me— this lady was a professional woman, and trying to occupy her one evening while I was, you know, looking after other people as well on the ward, I gave her a pen and paper and suggested she made a list. And she came back to me about half an hour later, and she was crying, and she said, "I don't know how to write anymore." And that stayed with me, and I thought, How dreadful, how dreadful that this illness robs people of their dignity, their abilities, and that is the tragedy of this illness. And the bigger tragedy is that this government, or other governments before the current one, haven't funded enough for research, because probably the only way we're going to get through this is through research. I mean, we're living longer, yes, we know that, and 1 in 14 people are reported to suffer from dementia or will suffer from dementia, so it's something that affects us all. And of course, at present with the COVID situation, that's had other problems, for everybody, people caring, professional carers, those that are paid to care, and for people in their own homes caring. And I think that has made money even tighter for, you know, people, and as you say, trying to get an attendance allowance for somebody that's suffering with dementia, it's It's not easy, you know, there's a lot of questions asked, there's a lot of— and the same when it comes to funding for people with dementia. When their assessment has been made on a hospital ward and the hospital then says, you know, we got that window, this person is ready now to go into a nursing home or a care home, depending on the severity of their illness. Now, if the person has assets, money in the bank, you can choose where you want to go. But if the person doesn't have that, then the race is on to try and find suitable accommodation, and this is another hurdle. By people suffering with dementia. Yes, because when we're talking, you know, about the costing and everything about care, etc., at the moment people who have dementia and have to fund the complete cost of their care themselves, unless they have assets of £23,250, you know, they have to pay. This means that many face the daunting prospect of spending everything they have on their care until they're under that limit. So if you've got your own home— and that's— sorry, I just wanted to check that, so I had to go to the internet. Apologies to the listeners for that break. I just needed, whilst I had you on there, while we were talking about this costing and what it was currently, to protect the listener, that you've worked from leaving school. You paid your taxes on those wages. You then put some of that money to one side. It was called savings. You put that to one side. You get taxed on your savings, okay? You still then take some of that savings to put down as a deposit on a house. You then have your stamp duty charge. The government tax you again, government tax you all your life. You then get to a position, you know, that you've retired, you've paid for your home, you've given everything, you've worked, you've given that government your taxes as due through your life, and then you find in these savings that you've got so you can still have quality of life, enjoy some when you're not working. If you have saved over £23,250, the government is what it's saying, you know, they will take this money for this care, and I think that's taken in there, and sell off your assets until you become under that, you know, which is what happens is, you know, it shows that the people who are also affected by dementia face catastrophic care costs, you know, people battling with the social care system to get support, you know, where the government are saying they pledge this. I— and yes, there was this announcement was doing, I know Dame Judi Dench in December 2020 was saying to me, you know, we haven't had this money, the Alzheimer's, we haven't had it, where's it going? And where's that gone? You know, I haven't seen where it's gone because I've seen no change, as you've seen, with people as a carer, what they're being paid, what's going across on there, you know, and that itself puts pressure on people, you know. Yes, yes, I agree. There are places like the Alzheimer's Society, etc., you can go to for assistance or stuff to go in there to help. But it is this costing and this time that is needed, which adds pressure because this is putting pressure on the carer. The carer that's got to be there because they don't have this money to go out, affecting their work. Gone is their time to go, and the guilt that we're playing with that you're seeing. And you know, you've probably seen on on the hospital ward, then when families just can't cope, and say, I can't cope with this, and some do do that, and their parents say, I can't deal with it, I can't mentally do this, and some do walk away, don't they? Terry? Sorry? I said, did you find that some people say, 'I can't do this, I can't do it, I can't cope.' They can't cope with the loss of the memory, etc., and the financial burden trying to do something else. Absolutely. And some people walk away. And, you know, you've got to think about the carer's well-being, the carer's mental health, the carer's isolation. You know, that person can be suffering from dementia. You know, it could well be that daughter or the son, have they given up their job to care for their parent who has suffering with dementia. There are people that have said, have thought for the best, we'll get Dad to sell off his property and move closer to us, and that sometimes isn't always a good idea. It exacerbates the dementia. The experts say that taking somebody out of their environment isn't always good, that, you know, as we get older, we need to know our own front door, our own armchair, our own bed. And sometimes people don't know what's best to do, and it's a situation where where they're themselves, their own life, you know, that isolation, that feeling of, am I doing this right? Am I coping with my father? You know, I remember a lady saying to me once, my mother is a shell of the woman that she was. My mother was a teacher, she loved her grandchildren, she loved her garden, she played bridge, My mother doesn't do this anymore. All I have is a shell. She doesn't recognise me anymore. And that is the heartbreaking situation for many, many families out there caring for people with dementia. And I think the government needs to step up with funding for research and paying carers for the service they provide, whether they're professional carers or they're the families coping at home with heating bills. And although, you know, you could have somebody that's incontinent of urine and you're washing, costs water and detergent, they, you know, they add up, and it's all this added cost. People should not be having to worry about this. The help should be there from the government. Yes, completely, because it can tip them over. That in the end, yes, we're saying about, as I was touching on, you know, in the different sections as I do this one where people walk away because they can't mentally physically cope with it, because like you were saying, financially, you know, they think they could in the beginning give up their job and help. They can't. They're tired, they're exhausted. And the fact that when the dementia starts, you know, onsetting to the next stage and going through that, that they do forget who they are and repeating and saying, "You've already said that, Dad," and repeating it again. And again. And then the memories that when they do come in and they don't recognise you, the pain that must feel for that person when they don't recognise you. Or, you know, I read in a news article last week regarding dementia, and this gentleman every Friday gets dressed wears his shirt and tie and gets dressed and goes into his wife and proposes to her because she's forgotten. But when she does that, her joy on her face when she connects him and says, she remembers him in that moment, and then he's gone. And he's been playing that role over and over every week and doing that, you know, which is— it was quite heartbreaking to You know, when we listen to Jane Goodall, and you know, when she had to portray somebody with dementia in that movie, you know, which has come on in different aspects. And I do ask, you know, we have all these reality shows, Big Brother, etc., have all gone in there, let's go into the jungle. My question is to the listeners and to people out there, why don't you have a show then to highlight this, where somebody will go in and live with somebody with dementia. Keep dementia. That's a very good idea, Jag. That really is a good idea. Because then, and broadcast that on TV. Let's say we want reality TV, let's give out some reality TV. Why don't you get reality TV in on on dementia. Why don't you bring these people that have to go in and live with that person? Yes, you'll have a dedicated nurse, etc., with them, but just getting up where you haven't slept all night, getting up to show, show the awareness of how it copes to live. That's only 3 weeks that would do that, or maybe a month, but just for a taste. We've had all these shows, as you know, about eating, trying to lose weight, do this. Let's have a look at some reality TV in some real causes like dementia, where 1 in 3 of us will suffer with dementia. 1 in 3 of us will lose our memories. 1 in 3 of us, from what we've been taught from a small child to grow with our families, to have that pain and not know who they are. Not knowing who we are. You know, so let's, you know, let's look at this. As Dame Judy Denton, you know, when the government pledges to do— we all need to stand up more, we all need to support, we all need to get in there for the nurses, the carers and everything. Yes, we all clapped for NHS, which everyone's wonderful doing, but you know, we don't want everybody to stand up and clap for NHS dementia. We need you to stand up and make it count. Make it count. Be the neighbour that makes it count. Be the neighbour that acts as support. Be the daughter that then goes, "Mum, go off for an hour, I've got this." Time management. And if we time management this, it can help. That time, that just that little glimpse in there, because for the carer that has this, that loses their own identity by becoming the carer that's abused, hit sometimes, because your husband and wife didn't know that he's hitting you. He wouldn't hit you, or she wouldn't have hit you if they were in their, you know, mind. When you hear, you know, my dad would never do that to Mum, he wouldn't do that. He was never that way, but his brain nerves, his neurons are damaged. So this is what causes that, yeah. So as we're saying to you there, you know, giving that break, because there is the care and support that should be there for the carer that is holding up this government with all their 3 hours of care that they're doing, okay, and that they're giving out. Because some of these carers— and we know, and you know, we talked about a story, didn't we, Terry, about the lady who just had enough and just ran into the woods, didn't she? Just to— she was going to do it herself, but she could not do that. That is somebody that needs support. The whole thing, when you're doing the diagnosis of dementia and you're saying, this is what we need to do to put support, this needs more. This needs help with family. It needs to. And if you can't cope, I mean, you have to go to another stage where they're going— then the financial strain and watching all their savings being stripped away. They are. I think too, Tony, we have to remember that a lot of elderly people are very proud, you know. They They worked hard, they paid their way, they put money away for the rainy day. And there's also a stigma about dementia, and it's only now that with more awareness, getting out there into the media, and more help, will people begin to understand. And on the whole, people are frightened of something they don't know. About. So if the ordinary citizen in the road thinks, yes, that man has got dementia, maybe he's a bit confused, maybe I'll go and offer to help him walk back to his house. Maybe that lady in the shopping aisle is a bit confused, maybe I'll help her. I'll push the trolley for her, I'll get her to choose, for instance, which tea bags she normally buys. Again, it comes back to awareness and education and awareness for each and every one of us, because this isn't going away, you know, dementia, we're living longer and it's on the increase, and until there is more research funded, we're not getting really very far with it, are we? You know, we're putting rockets into space. We could use some of that money for dementia research. I'm sure it would be better used. But I think for anybody who is over 65, you know, get your financial health in order. Don't wait for— God forbid, should you end up with dementia— don't forget, get that all sorted out before you get on in years and before it's too late, because then it's a minefield for families to be able to sort that out as well as all the practical day-to-day things. Yes, when you were saying that, when we were talking about wills and putting our affairs into order, that's probably the best way to say. For myself, I've already got a pre-planned funeral. I've paid for that. I've bought my plot. I have expressed my wishes. I've also bought my own headstone because my choice, my decision, what I want. And when I went into the stonemason, he said to me, 'Jax,' he went, 'I've never had a pre-order on a headstone before.' I said, 'Well, if you're going to take all my money, I've got to make sure there's some left for my son.' rather than government stripping if I lose my mind or whatever, but it's also my choice. And one thing I didn't know until you mentioned it on this show was power of attorney, and that's a very good thing. You know, very educated persons, you know, the people we are and people in there, it's something that we do forget. We put all this in order, as I have, but I haven't done a power of attorney, but I can assure you I will be doing a power of attorney. Because if I did, if I am one of those 1 in 3, I need to know it's all set out exactly what's what. Everything has to be itemised, or what's been done, and I will be looked after. And trying to pre-plan in case, knowing, you know, my son already said to me, Mum, you'll live with us. And I went, so you can't have that, you know, so when you get old, Mum, 'You can live with us.' You have your own life. I can't take your life, your t-shirt away from you. He said, 'No, Mum, you know, we said, you know, this house, and, you know, you can— we can put a granny annex on the side, or, you know, we can move and buy a granny annex, put that there, and then you can have your independence, but we're only through that door.' Which is wonderful for them to say. And like with Power of Attorney and putting that on, So they know my wishes, they know my wishes from the start. You know, this is my funeral service, this is what will happen in there, what I'll be dressed in, this is my choice where my money goes, and this is the pot that pays for any care or anything that goes in there. Because I don't want them to, you know, put pressure on some of their family. And I know the love of a family, love of people, that wants to and would like to put that person, but my choice, and when he asked me, was, "Yes, son, I would live with you as long as I had this separate section that was on, people could— I'd have my own independence, people could come in and out, and you still had yours." Now, if I'd lost my memory and my memory was coming through that, through dementia, through the damage to my neurons. I may not have wanted to do that. I thought, no, I want to stay in my own home, no, I don't want against anyone, no, I don't want to do that. He could have put me in a position and not known that I never wanted that. So you have to speak about these decisions now. You have to put things in place and in order so you do know. What you want, and how we would cope. And talk about it as a family now. I believe we talk about this, we see and we put ourselves out to hand, we offer that invisible hand of help to somebody that you can then say, like you said with the neighbour, sitting for your next neighbour to go and get their hair done, knowing what you're doing. If there's more awareness for each other, something that we did learn in COVID was to be neighbours again, most of us, because we all live a busy life going on. But during COVID in the pandemic, we did think, oh, I'm going to, you know, I'm going to have a delivery of food coming. Oh, Mrs. Jones, have you got enough bread? You just put a note on, or for them, say, if you're going out, you know, when we're coming into the winter, the cold weather, everything like that, is having that support. But we are coming to the close of the show, a show that we could go and speak at length on many, many times. And obviously we have expressed— we've only touched on these subjects, and it is unjudgmental, it is unbiased, it's us freeing our own mind to discuss in a conversation how we feel about this. And to open up. Let's not keep the lid on dementia, let's speak out more. And I, as always, I always leave my guests with the closing part of it. So in the last, we have 1 minute left of the show for you to say your final piece to somebody before it shows in the 1 minute. Sorry. Can you say that again, Jane? Oh yeah, so do you have anything to say? We've got 50 seconds left of the show. I know we could go on for just a couple of words that you can just finish, but you've got about 15 seconds to say. I think I would like to say that people caring for people with dementia, whether it's professional carers or people in their own homes, are doing a fantastic job and keep going, you know. Keep, keep doing what you're doing and seek help. Reach out for help because there is help out there, and we can only hope that the research will discover more, more and better treatment for people. Well, thank you, Terry, for being a guest on Free Your Mind. Let's Talk About It with LKJ. And to all the listeners out there, I hope this hour has helped somehow. And goodbye for this week's show.