World Alzheimer's Day Part 1

big old man just flying out the house. It looked really funny, you know, it was really embarrassing. Yeah, all that good stuff.

really nice. We'd rented at cottage and it was just really nice to be out of the city and just kind of in nature really and we took a program over to Cheltenham, which is actually really good as well, really lovely church members there and just been able to just take some time out and it's definitely good for me. I was always not sure if I was going to be able to make it, but yeah, it was really nice, and yeah, just kind of it's been busy, you know,

lots of things happening. But here we are back again, waring to go with our I don't know what are we on season whatever it would be. Yeah, we've been going what three years now, three years.

and what have you. So we're going to be covering one today, which actually it's a theme of this month of September, but also today, the twenty first of September being World Alzheimer's Day, so we're going to be talking about that. We've got some great guests on today, who's going to be sharing about the work that they do and the impact they are having within this world of dementia. So before we get started into that, let's have a word of prayer, So you would you mind praying for us to start.

a difference with this within this area. It's a topic that is dear to my heart because over the last I suppose what twenty since twenty nineteen, I've been on that journey of being a caregiver supporting my mum who was living with Alzheimer's, and it definitely has been a journey, definitely been one of learning emotional ups and downs, but also quite I say a learning process, but learning about the disease itself, but learning the opportunity to learn from

other people as well. You know, I've kind of had to do lots of research myself, not only in terms of understanding what it's all about, but also how I can be effective in the support and learning a lot about myself. You get to an age and you think you kind of have an idea, A lot of that's gone out the window, so you know, and you know,

life is a journey. There's always something new to learn, and you know, every day I'm learning something new about which, sadly, just so you know, a really heartbreaking and sad disease, but it's one that's incredibly prevalence. So we're gonna be talking about that, and I guess on today are people who are, like I said, have been making a difference within this world. I'm going to call it make a

difference within this world. So we've got two with us today and I'm going to just introduce, get them to introduce themselves very briefly, and then we'll start talking. And then I didn't I wasn't gonna be playing an interview that I did with my mum. Attends a day center local to where we live, which has been I would say a complete god send and a blessing respect to the manager today about the work that they do and how they support those people who are living with dementia.

So that'll be part of our program today. So with a further ado, we will speak to our guests who are joining us today. Now our first one I met. I guess it's coming maybe a couple of months ago because one of the key things I found myself being a career is trying to tap into the support networks that are out there. And again I've been quite fortunate to be able to find groups that I can join

that's at my workplace or in the local area. But then I was kind of sent some information about another group that was being set up, and this is how I met my first guest, Michelle. So, Hi, Michelle, welcome to our show today.

for joining us this evening. So tell us a little bit about yourself and what you do and how you yeah, and how we've kind of connected here today.

that it was old age. And so when I moved to the UK, I wanted to work with old people because of the relationship with my grandmother, and I met lots of old people. They were just like my grandma, and I got to find out that it wasn't old age, it was an illness, dementia, and that's when I started

really getting involved in it. I'm a general practitioner by profession my day job, but every minute I have outside that I'm spent advocating and trying to educate and enlighten people on dementia, primarily in the Afro Caribbean community, but everywhere else as well. I've just completed a degree with the University of London, Queen Mary and it's global public health, but we have to do a basis on something close

to our hearts. And I looked at dementia, which happens to be the twenty first century public health crisis at the moment globally. So it's not just in the UK, it's not just in the Black African community, it's everywhere. And thank you so much for highlighting it. And I'm really honored to be here.

who may not necessarily be familiar. I think many of us know the words and have heard of the terms, but I think there's probably and I guess name to kind of a bit of misconceptions at times as well. And I know dementsia is becoming much more of a topic that's talked about. We're hearing about, you know, well known celebrities and sort of public people in the public eye who have you know, disclosed that they have been had,

they've had a diagnosis. But for any of our listeners who don't know what this is about, yeah, do give us a bit of a background. And also Michelle, if you've got any bits to add in, please do it as well.

But in the black community, the more prevalent type of dementia is vascular dementia, and they are two completely separate

different kinds. So we use dementia and Alzheimer's interchangeably. But it's important to actually know what the diagnosis that one has or our loved ones have, and in my case, my family history was one of vascular dementia, which is very closely related to blood pressure, diabetes, heart disease that kind of thing as different from Alzheimer's dementia, where there's lots of proteins that are fighting for space in the brain type of thing. So in a nutshell, that's dementia.

It's a medical condition, it's an illness. Children can get dementia, Adults can get dementia, old age can get dementia. It can come from disease, it can come from trauma. So people who have head injury, either a major impact head injury or repeated bits of head injury, rugby players, that kind of thing, they can all get dementia. So it's a very broad umbrella term for lots of different conditions. That's really interesting.

So will it affect the child long term that they get it?

old kind of thing. So it's a very devastating, cruel disease.

she has Alzheimer's. So of course, with that diagnosis, I started to do my own reason search as you do, and looked into some statistics which I thought was quite alarming actually, so I'd probably like to share a few numbers with you, and you know, you can see what

you think. So when I was doing my research, approximately it says approximately nine hundred thousand people in the UK is living with dementia and by about twenty forty that will increase to one point four million, So that's the significant amount of people, you know, living with dementia, one in eleven people would be over the age of sixty five,

and one in six is over eighty years old. And I've also researched and found out that dementia affects one in twenty people under sixty five, So I think that's where the young onset dementia would come in possibly. And it's more common in women than it is in men, and it's the leading cause of death in the UK for women. So it is a big thing. It really is a big thing that needs to be taken quite seriously. And I think, like Ammonia said, we just need to keep talking about it now.

healthy old age. You know, we all want to live till an old age. But it's more about living healthily to an al Alzheimer's is. This is why it's so important to get a diagnosis, because Alzheimer's is more prevalent in females, and yes it's the number one cause of death, although statistics are absolutely correct. However, vascular dementia has equal male and female prevalence. A lot of people are like, well,

I'm not going to get it, you know. But Roslyn Carter, the wife of the former American presidents, made a very very profound quote, and she said, there's four types of people in the world. Those that are careers, those that will be careers, those that will need care, and the fourth group is those that eventually will become careers. So by twenty fifty, to add to Michelle's statistics, one in two of us will fall into those one of those

four categories. See that dementia ourselves, which is accumulation of lots of different life lifestyle factors, genetic factors. I must say that we might have the gene, or a person might have the gene, but it's our environment that pulls the trigger. So not everybody that has the gene, which is a Poe four for dementia, will go on to

develop dementia. And some people who don't have the gene, if they've lived their lives in a very challenging, difficult way for their brains, will go on to develop dementia even if they haven't got the gene. So it's a very very complex, very complicated picture, and you just need to keep talking because right now we have no cure for it.

of never really considered it. And as I reflect back, looking back and looking at maybe behaviors that were presenting or you know, things that were happening which I might have kind of a sparse at the back of my mind think well, actually that may seems a bit strange or odd. I never really considered it. I never really put two and two together. I really never really looked

at it. But looking back, I probably think maybe the signs were there and it might have been going on for a good number of years before you know, finally went protests and everything like that. So you know, how how does one kind of you know, get a diagnosism in what kind of things would you be looking for?

Because I guess as well, there are things that you kind of sometimes we make assumptions about it being a senior, it is a seniors, or you know, it's a natural part of aging, that kind of thing, but you know, it's probably not. But I think that's maybe where it seems to be normalized as that's what it is, which maybe is the kind of conception there.

have to suspect it. And that's where that's the angle I come from, because very often it's the caregivers who think that, you know, something's wrong with mummy, she's not right, because Mummy doesn't see herself as having a problem. So it's the people around them, the people who live with them, their loved ones, their families and friends, who notice it.

But if they don't raise it, or if they don't encourage their loved one to go and see their doctors for whatever their concerns are, Alzheimer's may present with memory loss, where you know, they just say, oh, I haven't seen you, but you were there the day before. Two minutes later they say again, oh I haven't seen you, and you say, oh, but I was here yesterday, and then they keep repeating it. Then you know that, But then it's way down the line.

By time symptoms start showing, or by time they get to that stage, the disease has been present at least twenty years prior, you know, So, like you said, Angela, you start thinking back and it's like, oh, okay, so that's what that was all about. You know my mom In the instance of my mom, hers was paranoia and she was somebody who was as cool as a cucumber. You know, nothing ever flapped her. She was completely chilled, and all of a sudden she was suspicious about everything.

You know. If you'd say you'd hold her handbag, she'd take it and should look if the money was still there, you know, out of character. So looking for behavior changes not necessarily memory loss, because it's only Alzheimer's that will

present initially with memory loss. Vascalate dementia and another very common one, fronto temporal dementia that presents with really you know kind of behavior like I don't like you, you know, like your behavior, and you start being withdrawing from the person rather than gravitating towards them to get them help.

But if you don't have a high index of suspicion, if you've never heard about dementia, you're just going to say, oh, this is old age, or he's going through a bad patch, or she's not feeling very well, and then you have all sorts of reasons why things are happening how they're happening.

But when that happens, if you go to your doctor, it's very easy to get assessed, and initial assessments are done, and it's very easy to be referred to memory clinics, and it's really helpful to get diagnosed at those early stages. A lot of people who are diagnosed in the early stages, they're still working, they're still holding down full time jobs. But if you don't say it, then comes to lights in a crisis situation, right a question.

for certain for certain ethnic groups or whatever. When you go to the GP and you say, you know what, I'd like to be assessed or i'd like someone I love to be assessed, is it well received or do you have to be persistent? Do you have to meet certain markers? How easy is it? Because you said it is, But in my experience, and obviously it's not surrounding dementia. But if I come to the doctor at twenty and say,

you know what, I've got heart problems. I feel like I might be struggling with something that might be cardiovascular, They'll say, well, you're too young for that, you know, I don't. Let's rule other things out first. Or you have to be very insistent and persistent to get the

help in a particular era. So if I'm young and I come to the doctor and I say, you know what, I want to be assessed for dementia or I don't hit those markers in their mind, would they still push me through or does or will we have to be persistent and insistent on it.

years ago. I remember when my mom started showing symptoms. I said to my dad, do you think mommy is becoming like ma'am mind you. I thought my grandma's was old age, because that's what I knew then. And my dad said, oh no, no, no, no, no, no, no no, And I believed him because you want to believe, you know, that there's nothing wrong. But after a while I thought, this is not there's something wrong here. There's something wrong and you know so. But then it was still a

bit of a struggle with my siblings. Oh, nothing's wrong with mommy. Nothing's wrong with mommy, And they say, hey, guys, this is more than just whatever she's complaining about, you know, because hers was paranoia. You don't trust the helpers in the house. You can't, you know, that kind of thing. And you still want to hope that there is nothing wrong, but there's no harm in checking.

oh no, there's nothing. We tested her and she didn't meet the markers.

I got an appointment. When I speak to other people that I know whose parents have dementia, they waited considerably longer. So I guess maybe it depends on what bur are you living. I don't know. But somebody came to the home, my mum's home and did the test with her in her home. Now I must admit mum was a little

bit frustrated. It took about a good hour and a half to two hours to get her tested, you know, and she was just so fed up and exhausted by the end of it, you know, And unfortunately she really wasn't understanding some of the questions they were asking her, and that made it difficult as well. And they were asking her to do little activities like trace around an image, for example, and she didn't understand what you know, and they were asking her questions that she really couldn't understand.

And then it made me think, Hm, how cultural specific is this? You know, this memory test? How cultural specific is it? And then at the end of it, Mum looked at me and she held my hand and she said, I'm sorry, Michelle, And I said, Mom, what are you sorry about? She said, I know I've let you down, haven't tied? And I said, no, no, no, you haven't let me down. She was just so frustrated by the end of you know, and she couldn't wait for the lady to go. And then a couple of weeks after

we got the diagnosis that is Alzheimer's. But on talking to other people, I know they actually had a brain scan an MRI scan as a way of diagnosing, and Mom didn't have a brain scan, so I'm not really sure whether she has Alzheimer's or whether it is another type of dementia. I don't know, ammonia. Should she have had a brain scan on top of the memory clinic diagnosis.

of the trade. And if somebody has got high blood pressure and over the years it's not necessarily well controlled, and somebody's got diabetes and it's been average control, not fantastic, then you're kind of thinking along the lines of could this be vascular dementia? If obviously we're talking about dementia. If somebody's seventy plus eighty and have only just started forgetting to turn the hob off or keep calling their children several times a day asking the same question uestion,

then you're thinking, okay, could this be Alzheimer's? And when you're having somebody who's younger than sixty five, which then you're thinking early on set. But it brings us back to the point of if you don't suspect something, you're not going to look for it. You know, it always has to be at the back of your mind. To a large extent, a brain scan is not one hundred percent necessary in all cases, and a lot of people

present in a bit of a crisis situation. Unfortunately, when it's more useful, it's when you have, say, fifty five year old chief executive who you know just doesn't hoping that well anymore, and you're thinking, what's going on here? You know it's not very clear, But when it's been going on for quite a while and they turn up, you know, after several years, then it's pretty obvious. You know what's going on, and you know you don't want

to go through too many invasive investigations. Luckily, we're getting bio markers. It's not quite out yet, but previously the dementias and Alzheimer's would be a diagnosis of exclusion. But now with the when the bio markers really come on board, it would be as simple blood tests the same as your kidney function and your liver function and your full blood count, which would be fantastic but you know that's not quite We're not quite there yet. We don't have

it out in primary care. So you know, there's lots of work going on. But I think the most important thing is that everybody you know, me inclusive. I thought it was old age at one point, you know. So we just have to keep educating ourselves as much as we can.

all supposed to be one homogeneous group. I'm not saying Black Africa is one homogeneous group. But it kind of narrows it down a little bit. I think the cultural aspect is so important, you know, like Michelle said, you cannot assess somebody out of their culture because it's not going to make sense to them. I know one of my participants, her mother had a kind of dementia which is called fronto temporal dementia, and that tends to be quite common in the younger age group that's less than

sixty five. And they were asking her questions about who's the Queen of England, and she was, what's my business with the Queen of England. You know, it doesn't mean that she has dementia because she doesn't know. We know that a lot of times is the short term memory that goes first and the longer term memory is there, so these people regress, So you know, I have to

put it in context of the culture. Maybe at that stage it would have been useful to ask us something related to her culture in the past, and you could assess a little bit more strategically that way. But I was looking at caregivers of people with dementia because they've got triple whammy, quadruple whammy, the black ethnicity. Their caregivers and the fact that they're black ethnicity, their migrants in

the UK permation, second generation migrants. And I was coming at it from the point of intersectionality, and what that is is the challenges that they face is not because they're black, or it's not because they're females, and it's not because they're migrants. It's a combination of everything. Lots of things chipping away at them and they become unwell, they have to look after their loved ones and it

just dementia caregivers we know are second patients. Everybody who has dementia, you've got another patient who's looking after them. And if one in two people are going to get this disease or be a care of by twenty fifty, then it kind of works out that the entire population is going to be in trouble one way or the other. And what did I find that, Yes, we need to look at individuals in the context of their culture, in the context of their background, which is a very very

big ask for the government. But at least we know and then we can start chipping at it bit by bits in different ways, even like this forum as well.

to be able to support that. So we're going to take a quick pause there, play some music, and then we're gonna come back and talk a little bit more about the idea of of you know, you mentioned about caregivers and actually how we can support them in a much better way to support those who are living with dementia Alzheimer's. So you're gonna pause for a piece of music here.

own experience that with her mother. And we have doctor Amonia Gasper who as a general practitioner obviously those who are living with dementia, but as also conducting research and we were just talking about her research into i suppose, the same community you mentioned, but also the role of

the caregiver and the impacts on there. So it's interesting as we're going to you know, we're talking about and you said something just before there that when somebody has the diagnos of dementia and living with that, there are potentially two patients in a sense of the one person who is living with the disease and those who are caring for them and don't know. Just as we were kind of as we're behind the music there, you know, talking about actually the impact of that and impact on

the loved one, the partner, the mother, the daughter, et cetera. So, and this is I guess, Michelle, where you come in in terms of your work as a therapist.

like what do I do? Do I keep my parents at home? Do I put them in a care home? And there's all of that going on in your mind, you know, dealing with that, the impact on all of that, And then you've got costs because supporting and caring for

someone with dementia is very very costly. For them to go in a care home, you're probably looking at minimum one thousand pounds a week easily to one thousand to two thousand on average per week, which you know, you do the maths, it's like eight thousand pounds what six to eight thousand pounds a month? Who's got that kind of money readily available? If you keep your loved ones at home, it's who's going to be there to look after them? You know, if you're having to go to work,

you can't. You may not necessarily be around to support your loved ones. So the other option there could be the possible ability of having a living care come in to look after your loved ones, but again that's very very expensive, and if you go to these care agencies sometimes you meet problems even in that respect because you're not necessarily going to get the best care of and not all careers are that good and have your your parents' interest at heart. And I'm talking from personal experience.

You know, I've been through so many different care agencies, and We've had so many different cares in and I've had to sack the whole lot of them, honestly, and it's been heartbreaking for me, and it's been very very difficult for mum because you know, at the end of the day, I do admit, nobody can look after your loved ones in the way that you can. But at the same token, what do you do? So it becomes

very difficult. And fortunately for me in my situation that I mean, now we've recently got a family member who's available and she is now taking care of Mom with her sister, and that's going remarkably well, thank god. But prior to that, it was it was just horrible. It

was horrible. And you know, when you're paying out all this money every week or every month, you expect a certain level of care, but a lot of people just haven't got it in them, and you wonder why their care is in the first place, you know, So I was having to deal with all of that.

care yourself. If you have less than that, you then have to go through what's called in the financial assessment through your local council and they ask you a million and one questions and even then you're not guaranteed to be successful with that, or if you are, they refer you to specific agencies that they have on their books and you have to take the cares from that particular agency, which may not necessarily be the best care for your

parents or your loved one. And on top of that, they will only offer you so many hours a day. For example, they may come in for thirty to forty five minutes in the morning, popping again at lunchtime, and maybe again in the afternoon and if you're lucky, in the evening. But then what happens in the in between stages, particularly if you've got a parent that cannot be left on their own, like, for example, my mum can't be left on her own. Somebody has to be with her

twenty four hours a day, seven days a week. You know she needs support on every level, so it's difficult.

but you have to wonder. But I can imagine all of this, and I know for myself there's a lot of stress anxiety around kind of managing that, and ultimately you want to you want to offer the support, the best support that you can. As you mentioned that, feelings of guilt and kind of feeling that you've not you know, you're not good enough to do it and you've not been able to manage well enough definitely an impact. And now I've often felt that and many times as thinking,

you know, I can't. You know, I'd never like to think that I'm a superwoman, but sometimes you kind of think, oh, I really want to do this because I think it's going to be the best thing. But you know, ultimately you're kind of potentially just going to burn yourself out. I'm sure both of you seen, you know, whether it's your own personal experience or you know you've seen you know, your patients or your clients come in and with that.

So what's been the sort of you know, I mean when you sort of see what's what would you say then is going to be the key thing? Because I guess if were and you know, they see this analogy in many different things. You know, if you aren't well within yourself, how can you then help somebody else?

quite stressful. And you know, what do you do? Where do you turn to? It's just so so difficult. Nobody turns around and says to you, Angela, how are you? How are you feeling? Nobody asks you any of these questions. On top of having to deal with your loved one. It can be absolutely frustrating. And as a result, I find people come to me and they have depression, They have high levels of anxiety, stress, stress, burnout because they

just feel really alone in this journey. And I don't think anybody should be made to feel alone, but people are not always there for them. And sometimes even within your own families, you know, they could be three four, five siblings, but ultimately what happens, all the care and responsibility lies on one person within the family because the other siblings don't necessarily want to take responsibility for whatever reason, and that in itself leads to frustration.

keep going and keep going. I mean, do you find that you have patients that do come in and often when you kind of you talk to them initially and then they suddenly reveal that they're a caregiver that sometimes like ah, it's all kind of makes sense, Angela.

lot of times there's different kind of cares. If you're caring for a parent, it's almost for many people it's a privilege to care for their parents, and they don't anticipate how hard it's going to be caring is a tough, tough job, but caring for somebody with dementia is the toughest of all the caregiving jobs. It's easy to care for somebody who's had a stroke or a diabetes, or a car accident or cancer or name it or altitude of illnesses out there, but a caregiver for somebody with

dementia is the toughest of all the caregiving jobs. And like I said, it takes a certain personality. When it's a child's parent, intergenerational, a lot of times the caregiver doesn't identify as a career So that's one problem on its own. You know, you're like, it's my mum, I'm supposed to do it, or it's my dad. But the challenge that you're faced with in caregiving it's not for the fainthearted, and it's not a walk in the park.

I'm not saying that it's wrong to do it, but you must learn to ask for help and to accept help. You can do it, especially in the early stages of the illness, but as the illness progresses, there is grief. You're losing your loved one. You know, you don't know this person. They look like your mum or dad. They sound like your mum or dad, but you don't know this person, so there's that grief before they actually pass away, and that can go on for years and years and years.

So caregivers often have a lot of burnout. You've mentioned a lot of depression, a lot of anxiety, but a lot of them don't even accept that their careers, so it's difficult. And how do you say to someone you need to take time out for yourself. The common response you get, well, who's going to do it? Very valid question, especially if all the services aren't in place yet, and it's not like the care homes are, you know, grabbing

patients off the streets. They've got their hands full and a lot of care homes aren't necessarily appropriate for your loved one. So it's a very difficult road. But they must learn that, like you said, you've got to put your oxygen mask on before you put them, not because you don't love them, but you can only give what you've got.

mental illness. Is that what makes it a hard aspect because I know a lot of people who struggle with mental illnesses or dementia and that sort don't accept that it's happening, you know, don't want the care that may be required, and so you're always there's often a battle going on even before you even get started about whether you should go to the doctor, whether you should get assessed, whether you should get the care and assistance you need.

Because most times it's like I'm okay, and fine, why are you here? Why are you doing this?

You know, hope is the last to go. You're trying very hard. Maybe if I do this, maybe if I sleep with them, maybe if I give them spinach juice every morning, maybe if I You know you and you can't stop trying, and nobody can ask you to stop trying, But all we can ask is take care of yourself, because it gets to a point that your loved one doesn't even recognize five minutes later, they don't know if you've been there or not. Yeah, it's cool, but it's the reality.

be like that. But I know sometimes I get LOLd into this maybe false sense of security that things seem quite normal momentarily, and then it completely changes, and it's just like, oh, actually, you know that kind of acceptance piece as to what it is, because as much as I may read about it and I try to educate myself, when you're actually in it seems a very different. It seems very different. So you know when you're experiencing and you know that in itself is yeah, the challenge there

as well. So I guess you know, what kind of practical advice would we you know, can we give to caregivers as to what they can do to be more effective I suppose in their caregiving journey. And I'm you know, I'm saying all that. I'm sure there's no if they could be one hundred and one different things, but are their keys that they could do that's going to be.

all her affairs are in a mess. You're backling with your grief of losing your dementia, but you're getting read letters through the door. You don't know which one you're focusing on, you know, So early diagnosis is key. It doesn't stop the disease, but in some instances can you can get help in terms of sometimes medication, the support services to kind of slow down the progression of the disease.

And then for people who are not necessarily cares. Know your numbers, the number of people you say, what's your blood pressure? And or when did you do your blood pressure last? And you know, and we're all very busy people. We don't nobody wants to sit around checking blood pressure

and all of that. But it's something so simple that you can check your blood pressure and if it's high, you can get medication for it, and it can be well controlled before it starts knocking off all your organs, your kidney, your nerves, your brain, everything in its path. You know, when last did anyone get their eye tests? When last did you get your hearing tests? Tests and hearing tests are the two new additions to the WHO

criteria of risk factors for dementia. Wow, not communicating. If you can't hear what's going on around you, you withdraw into yourself. There's less mental stimulation. When last did anyone get their eye test? When did they? You know you wear glasses apart from going for your usual which a lot of people don't do. And last did you get a dental check?

risk factor. If your blood pressure is high, your blood pressure might be perfect, but if you've got family history, if your mum and dad have blood pressure, it's a question of when not if well if not when, so know your numbers is important for that and you know, we just we're in a society now where everything is twenty four to seven. When I was growing up in Nigerian, I remember when I first moved here. I'll tell you

a very funny story. I was busy doing everything quickly quickly in the house, taking care of children before six o'clock. And my friends were like, why are you rushing? You can do it later. I said, no, that it'll soon get dark. Then there's no light to do anything, so it WANs to go to bed early. You know, the day kind of stops when the sun goes down. I should be maybe, but it saves your brain. You know, you stop at a certain points. You go to bed

when you should go to bed. Now two o'clock in the morning, some of us are working, yeah, and it's not healthy, or we're on our phones, or we're doing one thing or the other because we can.

you again. This is why conversation like this was so important, because if it's not new information, it's reminding us these are the things that we need to do. And if you pay attention and you put things into practice, it can help.

I sleep better. Yeah, because when I get and I lay down, I actually lay down and go to sleep, like I use the bedroom just for sleeping and I spend one time, I used to be in my bedroom a lot watching TV, and I don't go to my bedroom at all until it's time to go to sleep. So I did find that taking the TV out did help me too, and I felt myself also my brain also functioning better because I just be so foggy and face and hazy in the morning, and I was like, this,

can't I got to do something different. So on that point of you just saying, you know, just changing your lifestyle a little bit in a sense consistent yeah, and being consistent yeah, because I still get the urge every now and then to put a TV back in the bedroom, but then I say no, you.

people as well who have no support. So I went to bed one night and a light bulb was set off in my mind and I thought, right, I'm going to get up and form a dementia support group for people of African Caribbean descent, because I do think that our needs are slightly different, and I think there are support groups out there for English people Caucasians, but there's something about us Black African have being comeing together that

I think is really important. So I decided to set up this support group and I called it the Naya a Coma Support Group. Okay, so let me just tell you a little bit about the meaning of nya a coma and what it means. Nya Acoma is a Swahili name, but it's also used in Ghana as well. So Nya nya means purpose having purpose, okay, which I thought is important for me to have a sense of purpose even though I'm supporting Mom with her on her dementia journey. I then came up with the word a coma and

it means from the heart. So to be a good caregiver, I think you have to have patience, love, unity, and an element of endurance. Okay. So those two things together Naya a coma. So I thought, right, that's the name of my group, and that's high birthed it basically, And then I thought, what is it that I want my group to achieve? And I thought, A, I want a

sense of community connection. So other Black African Caribbeans can come together be sharing of resources because I don't have all the answers, none of us have all the answers, so sharing the resources in our group, we can learn so much from each other. And then I thought it's a way of giving emotional support as well, because admittedly not everybody has the finances or means to go out and pay a counselor for one to one support. So I thought, you know, we could have a bit of

emotional support within the group. So they're the three main areas that I look at in all my support group meetings. That's what I hope to achieve. So I started the group. I think it was January this year, and I must admit, for me, it's far exceeded what I can imagine what I could have ever hoped for. So it's not about

quantity in terms of numbers, but it's about quality. And you know what I find really humbling is I have people on the Zoom that come from the Caribbean, people here in the UK, Yeah, the Caribbean UK, and yeah, we're all over, So it's open to anyone in every country because it is a Zoom meeting. And I'm really,

really find I get a lot out of it. And when do my meetings finish, I get such lovely emails say from people saying, you know, oh I could do I could do it this on a weekly basis, for example, But I don't have the capacity to run the group every week. But it's a beginning. It's a step in the right direction. And what I tried to do is where possible get a guest to speaker on, a Black African or Caribbean professional in to come and talk about their areas and share with the group. So that's where

I met Ammonia. She's a GP, she's interested in dementia and she came on and she spoke At the last meeting I had. Okay, a previous meeting I had, I had a lovely woman come on and she showed the participants how to breathe correctly. You know the importance of correct breathing because believe it or not, if you're not breathing correctly, it causes a lot more tension and stressing the body. At my next dementia support meeting on the

third of October, I have a Black Admiral nurse. Admire nurses are She lists the mentioned nurses, So she will be coming on to tell the group how they can benefit from talking to an admiral nurse. And the service is free. You know, there's a free phone number seven days a week and if you're your witsend, or you're feeling absolutely frustrated, or you've got no one to talk to,

you just ring this admiral nurse. And I must admit I've ran them a few times myself in the past, and I've always come off the phone feeling a lot lighter and a lot better than how I was feeling before I made the call. So I think that support is of p It's of paramount importance. We need the support.

Obviously being part of this group, I've been able to make all the sessions and unfortunately I missed the one with pneumonia, but definitely kind of, you know, been able to speak with other people to hear there is it sounds almost strange to say this, almost a bit of comfort to know that you're not the only person who's going through this and you can kind of, you know, you can relate so much, and I've kind of tried to join as many groups or get involved in and

I've got there's a care as support network at my workplace, and again a lot of you know, there's quite a few spar staff members who again have got their own experience around dementia, and you know, the kind of comfort and encouragement they can kind of provide, or even I've been able to provide, you know, just talking about my own experience to other people. Again, in my local area,

there's been a few support groups as well. I know I was supported by a mind and never mind, I think it was as well, and I had a support where I could be checking in and what have you

for the first couple of years and stuff. So yeah, it's definitely definitely really important, and you know, the opportunity to kind of just talk about what's going going on, because as I think both of you have both said, unless you're in it, you don't really stand and you know, I kind of think, you know, sometimes people are very well meaning, but often and you know, and I sort of say this in terms of, you know, depending on the different types of communities that you're in, sometimes people

kind of shy away from checking in on you when sometimes you need people the most. Sometimes they think I'm not really quite sure what to say, or you know, they're probably okay, you know, and I kind of think sometimes a simple phone call or a simple text can just make so much of a difference. And you know, obviously as Christians as well, you know, we're coming from

that perspective as well. Sometimes you know, our own kinds of communities, our own other members around us sometimes don't even do that as well as they could do as well. And there's a lot more that possibly could be done in that respect. So yeah, the support, the support is

definitely needed, you know. And I think as well the idea around education for caregivers themselves, you know, because everybody you know, I know, I've sometimes shared resources and I you know, I can talk, you know, we can all talk about where we've got support from and where you can access stuff, you know, and that Michelle, you know, I've spoken to you know, the Admiral nurses and again, just when you kind of think I just need someone

to talk to, especially as you mentioned, sometimes when you're doing things on your own, you know, you feel like you're not even like I know, I work from home, so sometimes it feels like I've got no one else to talk to because there's no one else in the house.

You know, if my mom isn't here, then it's just me. So, you know, when you're feeling very frustrated or just you know, having a bad day in terms of what you're doing, just being able to pick up the phone speak to somebody who can give you that sort of reinsurance and encouragement is you know, absolutely, absolutely wonderful.

would you like a cup of tea? Would you like some biscuits? And before you know it, you're chatting to other people that are going through exactly what you're going through. However, on saying that that only works if you can get out the house and leave the person that you're caring for. So if you can't, I always think the second best thing is the Admiral nurse because that's a fune caller way.

I know, as you've mentioned about support, I did check in with the manager of the day center that their mum goes to. And again it's another area because I know, not only do they support the service users there who are living with dementia, but again and one of the things that you know, Karen mentioned was the fact that actually it's there for service for the caregivers and the

families as well. And I know, again I've experienced, you know, I've sort of gone there visibly quite stressed and distressed, and you know the kind of hugs or encouraging words that they've provided has definitely so you know, we'll hear a bit more from her with regards to that as well. Adventist Radio London inspiration with the song