← ADHD Women's Wellbeing Podcast
ADHD Women's Wellbeing Podcast
The MOST Up-to-Date ADHD & Women's Health Research with Professor Sandra Kooij
00:48:51
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- [00:01]
A
So just before we get started on today's podcast with the amazing guests that I've got, I wanted to remind you about the toolkit that has just been released. So we are about two or three weeks in and it is my exclusive content designed to help you thrive with ADHD and it's at the lowest cost price I could possibly do. It's 3.99amonth, but you do get a free two week trial. So if you're listening right now on Apple Podcasts, it's available to you and for this you get access to expert interviews, workshops and never for release tools. I'm going to be bringing you coaching sessions, specially recorded content. I really want to make this the most low cost, most impactful ADHD resource that I can. My goal with this is to really help the masses and I want to be able to do that through the podcast. So I really hope that you'll join me on the toolkit again. It's on Apple Podcasts and you get that free two week trial where everyone is telling me it's been so powerful so far. I've had lots of messages telling me that this is amazing supplementary content, so I really hope you enjoy. And here is today's episode. Welcome to the ADHD Women's well Being podcast. I'm Kate Moore Youssef and I'm a wellbeing and lifestyle coach, EFT practitioner, mum to four kids and passionate about helping more women to understand and accept their amazing ADHD brains. After speaking to many women just like me and probably you, I know there is a need for more health and lifestyle support for women newly diagnosed with adhd. In these conversations you'll learn from insightful guests, hear new findings and discover powerful perspectives and lifestyle tools to enable you to live your most fulfilled, calm and purposeful life wherever you are on your ADHD journey. Here's today's episode. I'm absolutely honored today to have Professor Sandra Coy here from the Netherlands. And I know her biography is hugely esteemed, it's long, but I just wanted to give you a little bit of background information about Professor Sandra Coy. Now she is professor of Adult ADHD in the Department of Psychiatry in Amsterdam and she started in 1995 with the research and the development of diagnostic assessment and treatment of adult ADHD in the Netherlands. And in 2006 she received her PhD on a thesis entitled ADHD in Clinical Studies on Assessment and Treatment. And so since 2002 she's been the head of the Dutch Expertise Centre of Adult ADHD and has been Involved in research, treating patients, educating professionals, informing the public, publishing books, scientific papers, websites, webinars and podcasts, and now a new ADHD app, superbrains. I mean, there's just so much there. But I just know from since 1995, you've just told me that it has been your absolute mission to help more adults with ADHD understand that it is real and you've validated. And now after all these years, you're bringing out all this new research from starting there in 1995 to where we are now. What are those huge changes that you have seen and that you've been part of?
- [03:25]
B
Well, in the beginning, ADHD in adults did not exist. So when I found out that one patient with borderline personality diagnosis didn't seem to fit in the criteria. I learned about ADHD at a childhood ADHD conference. And there I heard that it could persist in adulthood for the first time. It was not in the books, nothing. There were no interviews. And then I suddenly realized that she might have ADHD and that I wanted to test on her and her family. That was the very beginning with one patient, actually. And I had to study a lot to make this diagnosis for her because I was virtually ignorant. And this diagnosis fitted very well and the family cried because it was such a real prescription of her problems. Of course, I didn't try to treat her immediately with stimulants because I was afraid and nobody could guide me. I was still in education for psychiatrist. I was very young, but I was curious. So I went to the United States to follow courses with the ADHD experts in the United States. I read their books and all the research that was out, it was little, it was few, so it was easy. And then I started publicate publishing my first paper on this girl and what, what I learned in the. From the literature. And then I started research because there was nothing. And people don't believe it if they don't see numbers and, and opinions, of course. And so it all started. So I started from scratch and everything in my country that, that we now have, like instruments, like protocols, like a guideline, the Dutch guideline, I was involved with and I taught a lot of people with interest in order to give more people access to care, because one person can easily be overwhelmed and then it stops. And we need a general knowledge everywhere in the country. So I founded the Dutch ADHD Network, the European ADHD Network of professionals to unite and to support each other and to organize courses and trainings, and I still do now digitally in the ADHD Power Bank. So That I don't repeat myself too much and that I can add new stuff all the time. I like all three. Patient care, teaching and research. Because you need new information always to be up to date and to educate people to have better lives and to share knowledge with the world, with patients and professionals.
- [06:07]
A
Yeah, I mean, I think what you just said then, better lives.
- [06:11]
B
Better.
- [06:11]
A
You know, we've seen historically people with adhd, especially when they're undiagnosed, they tend to have much harder lives, much more difficult lives riddled with health conditions, and have had decades of negative self talk, whether it's internal and external and not being able to understand themselves and people not understanding them. It's awful. And we know that people with ADHD have a much shorter lifespan as well as. And so I think what your mission has been to be able to just say to help people have better lives and to thrive and to live alongside their adhd. Because we know that's not going away. If you're diagnosed as a child, you know, back from, you know, 1995, we now realize that we live with it, but it's just how it's managed and the support that we get, maybe the medication, the external environment, there's so many different factors that are involved with whether or not we can thrive, succeed with adhd. And from someone that has worked in this area for such a long time and you've seen things evolve, do you still get a little bit despondent by the fact that so many psychiatrists and doctors are still not understanding the impacts of undiagnosed adhd?
- [07:28]
B
Yeah, of course, that's very annoying. But it only means that they're not well informed. So I keep educating all the time because that's the only way to teach and to learn them. That an opinion is not enough, that you need to read the literature, you need to read books that are available, knowledge is available. And now I made videos on it for the ADHD Power bank to make it more easy and accessible for everyone. So that you cannot claim you have never heard of it or never could read anything about it. Yeah, it takes a long time because it should be in the education of such psychologists, doctors and psychiatrists, of course, and nurses. And then it's normal, then it's. Then it's part of the package that you need to learn. But if it's not, it's always something new, something discovered lately. And yeah, that doesn't work. People should learn it from the start. And so I have been fighting to get it into the education for psychiatrists. And I succeeded. But it's a voluntary part of the program, and if they don't choose to look at adhd, they don't need to. So that's annoying again, because it's. 20% of psychiatry suffers from ADHD. So under every diagnosis, other diagnosis, 20% of people also have ADHD. That's neglected, that's not treated, that's making them chronic. And that hurts my soul in the way that I cannot stand it, that it's. Well, life is not perfect. I'm not perfect, and my life is not long enough to get everything done. But I do my best. And these are still gaps indeed. Yeah, yeah.
- [09:15]
A
I mean, what you've done over the years is unbelievable. And just reading that out and the matter. If anyone who wants to Google you, you'll be able to come up with all the papers and the research that you've been part of. And it has made a huge change, even just from myself, who's been in this world for five years now. And I know that your name came up very early on at the beginning when I started researching about ADHD and hormones and understanding the connection. And, you know, maybe we can start from there. But just before we do, I just wanted to touch on what you said about the psychiatrist, because to me, I'm not a doctor. I'm just someone that knows quite a bit about ADHD and works with a lot of people with adhd. And I know I can see straight away with other mental health conditions how ADHD plays into the mix, whether it's disordered eating, whether it's anxiety, there's ocd. Like, I can sort of see the adhd, like, at the root and then it being the branches and, you know, the leaves and everything, all the other conditions. And I just can't understand how a psychiatrist who is assessing someone wouldn't see that ADHD could be the root cause. And. And if we tackle that, then hopefully the other things may kind of lessen slightly. I can understand why that must hurt your soul quite a bit.
- [10:33]
B
Yeah, yeah. Because here it is, and please take it. But, yeah, we can force people to learn. You can only make them curious. Yeah, that's what I try to do all the time. And not blaming anyone for not knowing, but inspiring them to learn. Yeah.
- [10:51]
A
And the good thing about people with ADHD is that we are curious. So when we have the epiphany of, oh, my goodness, you know, whether it's been someone that's told us or we've realized, we've read an article, we then go down the rabbit hole and do a lot of research. And there's no.
- [11:08]
B
I know people. People with ADHD teach me all the time what I should do next. So they are so think out of the box. And that's very, very helpful and necessary to proceed.
- [11:24]
A
Yeah. So I'm interested to know. So we've talked on the podcast quite a lot about hormones, and we've talked about the impact and where it shows up and whether it's, you know, puberty, pregnancy, post pregnancy. Unfortunately, there's a much higher risk of postnatal depression now we understand with neurodivergence in women. And so I was wondering what. Is there anything new that you're learning that you're understanding now and what should. And I'm going to go back to kind of like psychiatrists and psychologists and anyone that works with women. Why are we still not seeing this kind of filtration of understanding that hormones directly impact ADHD with girls and women?
- [12:08]
B
Well, I started studying women and hormones in 2016 when I visited a conference for women with ADHD. And I was one of the speakers and I answered the question of my patients, please study us. Please pay attention to our hormones. Please look at pmdd. We suffer a lot every month, and nobody has any idea what it means and any idea how to help us properly. We can use SSRIs. That was known at the time, but nobody knew why this happened and how often it was happening. So the first study I did was asking them at the conference with a questionnaire about all three life phases. And that was the paper from Dorani in 2021, which showed that indeed the women were right. They were suffering two to three times as frequent as often from premenstrual depression, not pms, but depression. So the more severe form, including suicidal thoughts, and it was really not. Not a tiny thing. It was worrisome. And they were depressed and impulsive, so that's really dangerous. And then postnatal depression was three times increased compared to the numbers in the general population. So 60%, 58 to be precise, reported having had at least one postpartum depression. That's not normal. That's highly abnormal because it means something. Same was true for perimenopause. So we knew from that moment that we had something that we really need to pay attention to, because it was not a story that these were 200 women reporting on one day in the conference. So it's a good way of studying and getting numbers. But then I repeated the same study in the department where I worked, adult ADHD department among also 200 women. And we got the same number. So this was a replication study with real diagnosed women. I couldn't be certain of a diagnosis in this conference group, but I was in my own team, and they had similar numbers. So then this was confirmed, and that was what we published. And then we needed to find an explanation. And if you dive into the literature, there's nothing about ADHD women at the time, there was nothing about interaction of hormones and neurotransmitters. What I suspected, there was very few studies about dopamine and estrogen interaction. That was the most interesting part that I found, because estrogen proved to be like a neurotransmitter. It's a hormone doing things for our female organs and so on. And we all know that. But it's also a compound that works into the brain directly with dopamine. And dopamine is the compound. We need to pay attention, to be organized, to be able to plan, to make decisions, to be quiet. And having control over our emotions and estrogen basically does similar things for us. So we have two hormones or two neurotransmitters, if you like, that do the same. If you have adhd. We assume that the brain is suffering from a low dopamine level. And when your estrogen drops in the last week of the cycle or after giving birth or in menopause, you have twice nothing to control your behavior, your feelings, your cognition, your memory. You are not able to fulfill any task that you intended to do in that week and maybe a bit longer. So it's really understandable. And people, women were so enthusiastic when we wrote this down and gave webinars about it, because they said, there's an explanation for us. We are not stupid. We are not crazy. It's not our fault. There's a biology behind it. Well, of course, I cannot measure it, but I hypothesize that this can be a good explanation. And if that would be true, we cannot measure estrogen in the brain or dopamine in the brain. We cannot. It's not possible. We cannot even use hormone levels in the blood because it's not reliable. It doesn't say anything about symptoms. So there's no correlation between the level of estrogen, high or low, and. And your symptomatology. So that's not a way to go. But we can confirm this hypothesis by using medications that increase estrogen levels and. Or dopamine levels. And if that's true, women should improve with one or the other or both. And actually they do so although RCTs are lacking still, I can tell you what I learned from clinical practice so far and from a case series that Maxime de Jong recently published. What she did was monitoring what women with ADHD are doing already themselves because they find out it's helpful. And this is a little increase of the dosage of stimulant medication in the pre meds whole week. And this is very helpful and it's easy, but you need to discuss it with your doctor because your prescription will be finished earlier and she needs to understand what you do with it it he or she. But it's, it's. We, we measured blood pressure and pills and mood and sleep and everything in those nine women only and they all were happy and wanted to continue every month in the premenstrual week with the increased dosage. So everybody whose interest can read it, it's on PubMed, so everybody can read what we did, how high the dosages were and what the women reported. So that's good news. Of course it's not rct, it's not randomized controlled trial. What we need to do to prove it. And then you give women a placebo versus this increased dosage. The other way to go would be increasing estrogen. This can be done with the pill continuously. So no stop week because in the stop week you drop your estrogen again to get this withdrawal bleeding that's normal. But in this case you can continue to take the pill, which is not dangerous at all in order to limit the chance of getting symptoms again due to drop of estrogen. And for some women this is also helpful. We don't know yet for whom which one is best, increasing the dosage of the stimulants or the continuous taking of the pillow. This should be studied. This is next. The other way is our three options now is the ssri, the antidepressants. They have been studied in PMDD for a long time ago and they have been proven effective for improving the symptoms in the last week. So you can even take it shorter than a whole month, you can take it two weeks because the effect of the antidepressants starts earlier than with normal depressions and maybe because the fluctuation of the hormones have impact on that. We don't know exactly why, but it means that serotonergic medication, dopaminergic medication and hormones interact, which we said in the first place, but also that serotonin can have influence on this process. So we have not one, but three options now potentially, which is good because not everybody can use Every medication and sleeping enough and having a healthy lifestyle and so on is very nice for people who can control themselves, but not in this week for women with adc. So it's kind of cruel. It's kind of a cruel treatment option to tell them that they should behave better and take care of themselves. And of course you should do that, but it's not possible. So it's not a way to go. And so I think medicine should think of better options and understand why this happens. And if you said why this happens, how it happens, you can invent the right treatments.
- [20:38]
A
Yeah, absolutely. And I think what you said then about just saying, right, or just sleep better or just have a bath and, you know, you'll be fine. I've heard this as well. I've done some research in my community about 300 women. And I asked some different questions. And I would say every single woman, the question of hormones and how have they impacted you and how's it shown up? Every single woman had a story. So that's 300 women all saying, I've either had postnatal depression, severe PMS or PMDD, suicidal ideation, anxiety, depression towards the end of my period. Like anything, not one of them said, I've been absolutely fine. I'm sure you understand this is that as women, we've all got hormones. It all fluctuates in very different, unique ways. And then with adhd, we're also fluctuating and it shows up in very unique ways as well. So to be able to find something that works for both the hormones and both are ADHD is a very kind of very highly sensitized dance, isn't it? Until. And then things change. So something that could work for me at 40, at 50, it might be. I might need something totally different. And then we have to bring in all the medication and all of that. And so I'm just saying that to validate to anyone that's listening here, going, I've still not found that dance that works for me. But at least now with your research and what you're bringing to the. The table, women have got more options. We're able to say, if that doesn't work, let's try this. And if that doesn't, you know.
- [22:13]
B
Yeah, but what you say is true. And research recently showed that women with ADHD have earlier menopausal onset. And this is completely unknown in the rest of the world except among researchers now because it's only one study showing that. And this is a genetic thing. So there's a. There is something that's in your genes that tells that time has come to stop making eggs and lowering your hormones. It's not in your advantage because your bones will lack estrogen for being dense. And the fractures that come when you are 60 are ahead. So you must be protected from an early age, earlier than anybody else. And it's not known. So that's dangerous for women with ADHD. And it means that when you're, for instance, you're 44 and you're having PMDD, severe PMDD in the week before menstruation, your PMDD may increase by advancing during the cycle. So first is only the third week, then it starts in the third, and then the second, and then it's a whole month. And then you think, I'm getting crazy. I can't cope. So this could be an indication of early menopause in women with pmdd. And, of course, there's no underpinning for this. But that is logical thinking, because estrogen drops. And so you will, earlier and earlier in the cycle, get more depressive symptoms, cognitive complaints, anger, outbursts, whatsoever. So this is a group I worry about, because if you do not start early with hrt, you may get unresponsive to hormones. So the ovaries and the brain are not forever open for hormonal influence. It stops after a few years. So it's necessary that we learn. It's necessary that women know, but especially the GPs who prescribe the hormones. And this is a problem because they don't. They don't know it. But awareness often comes from patients. So I trust you that you will help. Oh, yeah. But doctors don't believe women who are on their doorsteps and claim things. So we should publish for you and do more research. And we do that. We will do that.
- [24:40]
A
I'm grateful. I mean, 100%. I've heard this through so many women that I've spoken to that their perimenopausal symptoms have started, and they've just questioned it and said, well, I'm too young. And everyone tells me that, you know, before 45, it shouldn't happen. And you get invalidated. And the doctors say you're too young for hrt.
- [25:01]
B
Yeah. We continue to do research on premature ovarian insufficiency. So failure of your ovarian. Ovarian leading to perimenopause early, of course, it must go with early onset of hrt. HRT is important for not only your cognition and mood, but also for the heart. And there we come to the story of the female heart during menopause, that's at stake, because first cardiac heart attack is cause of death in women, number one. And this is not known. People think it's breast cancer, but it's cardiovascular disease. And we found out in the outpatient clinic of cardiologists here in the Netherlands, with whom I cooperate. And I was intrigued by how many ADHD women she saw in her outpatient cardiology clinic. And I said, if that's true, we have to screen now, immediately, because lives are at stake. I'm a bit dramatic sometimes, but it helps to get things done. So she did, and she was very committed. And Janneke Wittkock is her name, and she is a defender of the female heart that has other problems than male hearts and for recognition of the female heart. And we found that in the 300 women that we screened for ADHD, that 35% screened positive. So that's a high, high number. And it's only screening. It's not assessment. And for assessment, we need more time. But all the women she referred to me for cardiac complaints and ADHD treatment, they did have it. And it's not saying everything, and we have to do more research. But this was the very reason we also started the H3 network in the Netherlands, Head Heart and Hormones, for the connection between psychiatry, cardiology, and kinesology, because those women who had heart problems and ADHD were all in perimenopause, and those women with ADHD were younger than the others with these complaints, two years younger. So that means that the risk comes earlier for women with adhd, and this could very well be explained by early menopause in women with adhd. This has to be combined in another study, but I think we find some directions here. And what does this Head Heart Hormones Network do? We educate the public, we educate our colleagues. We want to form regional little cells of the H3 network so that psychiatry, cardiology, and gynecology voluntarily come together and start working together for the sake of women with ADHD and potentially also for other women with psychiatric disorders, because we assume it's not unique for ADHD to have this combination of interactions in the brain, because estrogen protects the heart. So it's not a good idea to stop too early with estrogen and progesterone, because it protects the heart, it protects the bones, it protects mental health. And, yeah, that's why women with psychiatric problems, including adhd, suffer more when estrogen drops.
- [28:25]
A
Okay, so I just want to move on to Covid or to long Covid and to. I wanted to give you a little bit of a background about my whole story, because I got Covid when it was before. COVID was like a thing. And we'd gone to Italy in February, and I came back from Italy and I was very, very poorly. And I was in bed with what I thought was just a horrendous flu. And then slowly after that week, I realized I definitely had this coronavirus. So I got it. I was poorly. It took me a good few a month to recover, to feel, you know, better. But this was in 2020 and age 40. My menopausal symptoms came out very quickly after that. And my ADHD symptoms, it all kind of like. It was like a perfect storm. And it felt like it was after Covid. However, on the flip side, I was homeschooling four children. I had a husband who was very stressed with work. I was starting a new business. I had so much pressure going on, worry about parents and everything. But what I did know is that my menopausal symptoms came out much stronger, and which is why I then got my ADHD diagnosis. It was sort of all. It's all sort of interconnected. But I wondered what you know now about long Covid and ADHD and what the connections are and what are you seeing in the latest research?
- [29:52]
B
Yeah, Long Covid is still a mystery for all of us, but we learn a lot, and research is going fast and I hope even faster for the benefit of patients. What we see is that people with ADHD have two to three times more often Covid and also long Covid. And Covid is basically an immune disorder if you keep having it or that you don't build up any resistance using vaccination or having had an episode of COVID before. So the immune system is failing. And why is the immune system failing in people with adhd? Well, we know that there are immune disorders in adhd. Other ones, such as allergies, such as inflammation in the gut, in the lungs, asthma, cardiovascular system causing low blood pressure, causing the illness of Renault, causing migraines. And this has to do with hypermobility with thin connective tissue. Thin connective tissue is a problem because it's the connective tissue, the skin, the mucous membrane, brains in your mouth, in your gut, in your lungs, are the barrier to bacteria, to viruses, to allergens. And if this connective tissue is thin, there might be microscopic small openings that let the bacteria through the viruses more easily than in other skins. So if you are highly hypermobile, I mean, that you can put your thumb to your pills. I Definitely cannot. Or yeah, you're better than me. Oh, much better. And that you can put your hands on the floor with straight legs. I can do that easily without exercise. I cannot do it. You can. You might be hypermobile. Yeah. And that's, that's an advantage when you are gymnastic. And you can do better than anybody else, but. And many sporters do with ADHD are having hypermobility, and they try to reinforce their muscle tone by sporting so much in order to prevent injuries. So people with hypermobility often have a high number of injuries. It's connected to Alers Danlo. This is a genetic connective tissue disorder. And hypermobility is there in several subtypes, but it's connected to allergies and inflammation in the gut, in the lungs, in the brain, it's connected to low blood pressure and the tendency to faint. When it's hot, when you're frightened, when you're stressed, then you may faint earlier, easier than others. This is exactly what Covid does to the brain. So Covid does when it's entering the body. It induces inflammation in the cardiovascular system, in your. In your blood vessels, causing hypotension, low blood pressure, fainting. You get severe headaches because you're not supplied. The blood supply is insufficient. It's literally here. And you almost faint because you have no oxygen left in the brain, because the blood doesn't reach the brain enough. Then you go down to protect your brain. Actually, that's why you faint, because the brain cannot suffer loss of oxygen, so the blood must stream to the brain and therefore you go down. It's a protective measure of the body. Covid organizes inflammation in the gut, in the lungs, in the brain. That's very similar to what people with ADHD with hypermobility already endure. This makes me think, but it's only hypothetical. I have to warn you, nothing is certain of what I'm saying now, that what if ADHD started in people due to a viral infection, after a viral infection in the past, we know there's genetic risk that is there in families, but if you also have a risk for immune disorders and such a virus comes along, you are the one who is first attacked. And maybe it induces ADHD symptoms in the brain, because those Covid symptoms and the symptoms of this mast cell activation syndrome that causes all the inflammation is similar. It's restlessness, inattention, impulsivity, anger, outbursts, headaches, tiredness, sleep problems. So I wondered, what are we looking at? Is this the end of psychiatry? Because we're not alone. We're not alone. It's also working for depression and bipolar disorder and schizophrenia, autism. But it's also very much starting now, this research. So I was thinking, what if we should treat psychiatric disorders with anti inflammatory agents instead of SSRIs, stimulants and melatonin, which I prefer. But what if I also read in literature that the medications we use most for ADHD, melatonin, SSRIs and stimulants are all antioxidants. They all are anti inflammatory. So we already do the right thing in a way, but maybe not most optimal for the body at least.
- [35:39]
A
Yeah, yeah. Because we now know about the gut brain connection.
- [35:43]
B
Well, we do know more and more. And the guts and the bacteria also play a role. What we eat plays a role. Diet may become more important in the next future to influence the gut health and also the brain health. So there are so many new things coming. But maybe psychiatry will end because, because it might be brain inflammation after all. I don't know. There is also a brain inflammation group on LinkedIn, a brain inflammation consortium, something like that. I follow them and you could follow them too, and they come up with little pieces of new research and new questions and. Yeah, informing the public about the latest stuff.
- [36:32]
A
Yeah, I mean what you're saying is just beyond fascinating and so many dots are connecting for me as well. We've had Dr. Jessica Eccles on the podcast who talked about hypermobility and, and she is just amazing and she's doing such incredible research in this area and understanding that through the lens of neurodivergence as well. We've had neuroscientists, we've had, we've had so many different experts, gut brain experts as well. And I think what you just said then is this the end of psychiatry, basically makes us realize that like you say, this is not alone. This is not a detached condition. There's so many different interconnecting parts to it. And where we see it show up physically, we show, we see it show up in our gut inflammation, migraines enough, you know, in our body with injuries. It's, it, I think in a way it's very exciting, but in a way it makes me feel a bit worried because how long is it going to take to filter through to the mainstream medical industry? Like how, how, how long do we have to wait for doctors to be able to say, oh yeah, so there's a patient and she's coming in with migraines and PMDD and she's also getting injured, You Know when she's doing her exercise.
- [37:53]
B
We have to write and teach and we'll do that. The whole system is implicated in adhd. It's not just a brain problem. It might be the other way around, a physical problem that also has brain manifestations.
- [38:08]
A
I wanted to finish on dementia and ADHD in the elderly and to be able to understand what you're seeing now when you said that this is very special focus of yours, ADHD in the elderly. What do we need to know?
- [38:22]
B
Well, the problem is that ADHD is not known among doctors who diagnose dementia. And we know from studies that the risk for dementia might be increased as well. You have several types of dementia vascular, which might be logical, knowing that the vessels, the blood vessels are inflamed earlier in life. This might lead to cardiovascular disease and also brain problems. You have Alzheimer with the plaques that start early in life. And also you only develop dementia when it's far after a long time. And there are many others, but they are all increased in adhd. And we don't understand exactly why and what the mechanism is other than that we suppose that having attention problems your whole life is not good for having no dementia. But we don't know the mechanism. We don't understand yet. But it's very important now that people who get diagnosed for cognitive decline because they worry about their memory and their attention problems that are increasing with age, they go to such a clinic for for cognitive decline and that they are diagnosed for cognitive decline. While they may have lifetime ADHD undiagnosed, and the doctors working in those clinics have never heard of ADHD except in childhood, they have not been taught about adulthood. They don't know that they are looking at possibly a patient with lifetime attention problems who complains about an increase of attention problems. Only the patient cannot say I have ADHD because he was never diagnosed. And if he was, he might have forgotten because he never followed up on it. It happens a lot. People can forget the diagnosis. In the States this is maybe more advanced because they're working with ADHD in adults for a longer time. But in my country it's still very new in the old age psychiatry and in geriatry, geriatric doctors. So I think there, the first study should start to disentangle cognitive decline from adhd because getting a diagnosis of ADHD means that there's treatment and getting cognitive decline and or dementia is much worse diagnosis. With another perspective, dementia is a deadly condition. You know that your life will end in 10 years or, or less, depending on the moment. That you get diagnosed. So an ADC can also be treated in older people. So that's good news. And we did one study in older people based on our patient files, looking at what dosage did they get, did they respond as good as we expect from other adults? What about hypertension and cardiovascular disease that they have in higher frequency because of age? And what did we do about it? And did everybody follow the protocol? And if you monitor well and you measure it and you treat hypertension and you control with the cardiologist when necessary, it seems to be safe. But no RCT yet, no control trial yet. So you cannot do everything. I hope somebody else will do this. It's a lot of work to do this. And I. But now on the female ADHD, and maybe good to tell that our Diva interview, Diva 5, the diagnostic interview for ADHD in Dutch, is being adapted to the female presentation of adhd. That means that we cannot change the criteria based on DSM 5, but we can change the examples of the criteria so that women will more easily recognize themselves. Because the criteria were made for boys and men and not for women. And women have another presentation. They have these fluctuations to start with a cycle. They have masking, they have compensations and everything. And this should be incorporated so that women get more easier diagnosis. I say again, we don't change the criteria. This is a bridge too far. But then do change the examples with the criteria based on studies that we're starting now. So my PhD student, Noemi Platania, is starting now with that part of research.
- [42:47]
A
Okay. Where would you like to see all your work that you've been doing and you're still continuing to do? Would you like to see the DSM 5 change? I mean, how does that even happen? And when is the next time it's reviewed for a change? Because I would say that would be. If we're trying to filter down to doctors from all around the world to understand ADHD better, surely, unfortunately, it comes down to, well, if it's not in the DSM 5, then we're not taking it seriously. So how easy is it to get this change in the DSM 5?
- [43:19]
B
Well, the trick is that we developed Diva 5 ourselves. So we are. I'm the owner of Diva 5, I'm the editor of the foundation, and it's available in 30 languages. So it's basically a worldwide instrument. So if we, with all the other ambassadors of the Diva 5 in all countries, it's a whole team of over the world, if we agree that it's necessary to adjust the Examples to the criteria to the female presentation. And we will do this not alone. We will do this based on research. We're not adding examples, but we are asking focus group what examples are necessary, Both women with ADHD and experts on women with adhd. We do research on which examples are most probed by women compared to men in the data that we already have from the current Diva. And then we come with a new Diva 5 that must be translated in all languages. I try to get enough money to do that, and it will be a step up towards changing the criteria in the future, I hope, but I'm not in the committee. It's very hard to change criteria because ADHD is so much under pressure. The diagnosis of ADHD has been so much under pressure and there's so much criticism that the change of criteria leads immediately to increased numbers and it is a fat diagnosis and so on and so on. You know, the discussion. And now that women have the diagnosis too, well, this is not helpful for increasing the number of diagnosis. And so people are very critical, especially journalists and the media and some governments who are afraid of more costs. And well, this is all not helping. But we will continue to do the basics to get this further.
- [45:08]
A
But even in just this conversation, you've given us all so many different dots to connect. That empowers people to go, ah, okay. And my last point is a lot of women like me were getting diagnoses because of their children. I actually knew about ADHD in my family a long time before because my two brothers were diagnosed when they were children, the 1990s, but I wasn't. But many, many people are getting diagnoses because they take their child in for, you know, for an assessment. But what they're able to understand, they see it in their children, they see it in themselves, and then they can see in their parents. And they can look at the parents health conditions like cardiovascular disease, dementia, maybe Parkinson's, maybe early perimenopause, all these different things and go, okay, I don't. I want to break this cycle. I want to have a better outcome for myself. And we're rewriting the next generation story and I think we're really at the beginning and I just want to say a huge, huge thank you from myself, but I know from so much of my community as well, who I know, you know, get a lot from your research. And I just want to thank you for your dedication for all these years because I can only imagine how exhausting that must have been.
- [46:24]
B
Well, it was my pleasure. I've enjoyed it a lot and it's given me inspiration and empowered myself and it was the best dedication I could choose, I think in my life.
- [46:38]
A
Well, thank you Professor Sandra Coy. I'm going to make sure that everyone has all the links I've been writing down furiously. I've got all the links of all the different websites and all the amazing projects that we're involved in. I'll put them all in the show notes. But thank you so much for your your dedication to ADHD in adults in women and continuing your curiosity in in this in this subject. And I look forward to reading lots more research and papers from you.
- [47:07]
B
Thank you so much.
- [47:11]
A
If you've enjoyed today's episode, I invite you to check out my brand new subscription podcast called the Toolkit. Now this is where I'm going to be opening up my entire entire library. My vault of information from over the years, my workshops, webinars and courses, my conversations with experts about hormones, nutrition, lifestyle, and bringing brand new, up to date content from global experts. This is going to be an amazing resource for you to support you and guide you even more on more niche topics and conversations so you can really thrive and learn to live your best life with adhd. I'm so excited about this. Please just check out it's the Toolkit on Apple podcast. You get a free trial. Really hope to see you there. I hear from so many of you every week that this podcast has helped you immeasurably and if that is the case, and it really has helped you understand and validate yourself and your experiences as well as giving you options and ways to move forward positively and finally believe that you can thrive at life with more insight, more guidance. I would absolutely love it if you could support the podcast with a small tip. I actively choose not to hand over the sponsorship or advertising of this podcast to ensure that it's the most pleasurable and easy listening experience for you as the listener. So any tip or any contribution is greatly appreciated. To ensure that I can carry on with this podcast with the content. All the details are in the show notes. There's a link there. Thank you so much and see you for the next episode.