Podcast Episode 16: Menopause or dementia with consultant admiral nurse, Jules Knight
Many people experience brain fog as a primary symptom of the perimenopause and menopause. Issues with memory can be very distressing and for many and raise serious concerns regarding whether an evaluation from a memory service may be needed. With increasing anecdotal accounts detailing worries about dementia, it’s important that we consider the cross over and differences between perimenopausal and menopausal symptoms, and syndromes such as dementia. Joining host Lauren Redfern on the podcast is Consultant Admiral Nurse for young onset dementia at Dementia UK, Jules Knight.
Lauren and Jules discuss how cognitive symptoms associated with the perimenopause and menopause can often be missed by practitioners, resulting in unnecessary referrals to memory services. Jules outlines how, though the cross over can be difficult to tease apart, factors such as age and the presentation of other symptoms should be considered by clinicians when thinking about making a referral to a memory service. Fundamentally, Jules stresses the importance of keeping the perimenopause and menopause at the forefront of our minds clinically, when assessing patients for possible young onset dementia. In her experience, the perimenopause and menopause is often a more likely culprit when it comes to struggling with memory issues.
You can follow Jules on Twitter. You can also find out more about young onset dementia here. If you or someone you love is worried about young onset dementia you can contact the Dementia UK Admiral Nurse Helpline on: 0800 888 6678 or alternatively, email the team at: [email protected]
Lauren Redfern [00:00:06] Welcome to the podcast for the Newson Health Menopause Society, a multi-disciplinary collective of interested professionals passionate about improving hormone health across the world. The society exists to educate and inspire others to raise the standard of menopause care and access to treatment, to facilitate research, collaborations across specialities and countries, and to provide expert advice and guidance to our associates. The ultimate aim of the Newson Health Menopause Society is to improve the lives and future health of women and all who experience the perimenopause and menopause. I’m Lauren Redfern. I’m a medical anthropologist and I’ve been exploring the experiences of those using testosterone as part of their HRT treatment. In this podcast series, I’m going to be talking to guests from a variety of different disciplines in order to share knowledge and ultimately improve our understanding of the perimenopause and menopause.
Lauren Redfern [00:01:05] One of the most commonly reported symptoms of the perimenopause and menopause is brain fog. Many of those experiencing this symptom describe the sensation of feeling like their brains have turned to cotton wool. They describe becoming forgetful, how they can’t remember names, lose their keys, or just end up writing endless to do lists. Ultimately, brain fog can make it hard to retain information, and sometimes the symptoms can become so severe that people start to worry they may have dementia. This can be particularly worrying if you have a family history of dementia. And some people find themselves so concerned that they referred themselves to have testing at a memory clinic. The hormones estrogen and testosterone play an important role in cognition and memory. And when the levels of these hormones begin to drop during the perimenopause and menopause, it can lead to a range of cognitive symptoms, including memory loss, difficulty staying focussed, being able to find the right words, and losing your train of thought or getting confused easily. Fortunately, the right type and dose of HRT can often help to improve brain fog and help with clear thinking. However, for some, the links between the perimenopause and menopause and dementia symptoms can be all too real. Joining me today to help me broach the topic of menopause and dementia is consultant admiral nurse for young onset dementia at Dementia UK, Jules Knight. Jules has a special interest in perimenopause and menopause care. Hi, Jules. It’s so lovely that you’re joining me today. I wondered if you might just start with introducing yourself to those listening and telling us a little bit more about the work that you do.
Jules Knight [00:02:44] Hi, Lauren. Very nice to meet you. As you mentioned, I am a consultant admiral nurse for young onset dementia and0 I’ve been in that post a relatively brief time. But actually my interest in young onset dementia has really been evident throughout my career. I’ve always worked with families with young onset dementia. There’s particular difficulties that people with their onset dementia face that have always been of interest to me, and I certainly rise to the challenge of supporting families in those situations. So my role within Dementia UK is a national role and essentially it’s about improving the understanding and support of young onset dementia and for families affected by young onset dementia. So it’s a very broad role and I also offer support to our helpline and our closer to home services within Dementia UK. So supporting our nurses in really developing their skills and understanding in young onset and how they can support families experiencing onset dementia.
Lauren Redfern [00:03:45] So obviously in the introduction, I talked a little bit about the experience of brain fog, which I think can be quite a worrying symptom for many people because we do associate issues to do with memory and memory problems, sort of almost exclusively with Alzheimer’s and dementia. And I wondered if we could just spend a bit of time talking about any distinctions between, say, general brain fog that could be caused by the perimenopause and menopause and memory issues experienced in patients with dementia.
Jules Knight [00:04:15] I think one of the important things to think about initially is that young onset dementia is quite rare. Of the over 900,000 people living with dementia in the UK, we have roughly 70,000 people actually diagnosed with young onset dementia, living with young onset dementia. So it’s quite rare for someone to actually have young onset dementia. But you’re absolutely right, there really is a crossover in terms of the symptoms. However, I guess for young onset dementia, which is probably a good thing to know, is usually one of the first symptoms that people experience isn’t memory problems. It’s usually something different. So young onset dementia tend to be more rare dementias and they tend to have different symptoms to memory problems. They may come later on with dementia, but it’s not the first thing that people experience. So I think it’s really mindful to take note of that. Obviously, it’s something to worry about, certainly something I’ve experienced myself. But really it’s understanding that the symptoms of young onset dementia will progress, they will develop and family will notice those changes too. I think for women who are going through perimenopause and menopause, it’s symptoms that they pick up initially. But actually we tend to manage them quite well. We tend to put in strategies to support ourselves. So as you mentioned, we have extensive to do lists, we have our diaries, become age memoirs, if you like, for supporting us. Whereas previously, we may have had very good memories. So we are able, for the most part, to continue life as normal. But we put those strategies in place to support what we’re doing. And it may be more difficult for someone who does have young onset dementia to actually do that. It may become more challenging and there will be other aspects to the dementia that become more obvious. So for example, there can be changes in personality, there can be changes in reasoning, in judgement. There can be changes within the family dynamic as well. I suppose the most important thing I would say if somebody is really worried about their situation and worried about their memory, the brain fog and how they’re functioning is really to go to the GP and to discuss those symptoms so that the GP can work with you in ruling out conditions. And just to say that can take time. Sometimes it can take months to work through what might be happening, but usually the GP would start by looking at any physical conditions that they can treat. So usually you’d have a blood test and the blood test would rule out simple things like thyroid function, vitamin deficiencies, perhaps infections for example, that may contribute to cognitive problems. So obviously they can be treated. So if you have a thyroid problem it can be treated. The GP should also assess for depression and I know for many women when they’ve been to their GP about their symptoms, they’re often treated for depression. It’s often something that the GP kind of discusses with you when you’re looking at the symptoms that you present with. If you have low mood, if you have concentration problems, certainly I think for women who are going through menopause and perimenopause, they may be aware that they have the symptoms of depression, but it feels quite different. But it is again really important to have those conversations with the GP to help them understand what’s happening. In terms of menopause and perimenopause, again, it’s really important to have treatment for those symptoms and as you mentioned, obviously our hormone levels are changing. It could be that you might want to try HRT, and I’m certainly not an expert in HRT, but if you treat the reduction of the hormones, the changes that you experience with perimenopause and menopause, then you should see changes in how you function. You should see an improvement in your brain fog, in your concentration. And again, it might take time. It doesn’t happen overnight. It can take several months to find the right dose, the right treatment for you. But you should see changes. And I think if you’ve had that treatment, if you’ve been checked out by the GP, the GP has ruled out all kind of known physical causes and you’re then still experiencing those problems, you still perhaps have that brain fog, then that’s the time to ask for a more specialist referral.
Lauren Redfern [00:09:09] And I mean, I think that’s interesting as well, because I know that you mentioned previously that in your career you have actually seen a number of women that were being referred to you for potentially early onset dementia. And really you were able to quite quickly identify, I think this is perimenopause and menopause, not dementia. And I think it kind of demonstrates that we really need to be continuing to raise awareness and talking about how HRT can be for a lot of women, really life changing around these memory issues and I suppose encouraging clinicians to recognise the cross-over. Perhaps before referring to someone like yourself. And I wondered what your thoughts are on this and whether you could talk a bit about that.
Jules Knight [00:09:49] Yeah, I absolutely agree with everything that you’ve just said actually. I was very lucky to work in a memory service. Probably when you have the pandemic in that way, you forget how many years ago things are. I think it was about eight, ten years ago I went to the memory service and my role there again was a young onset role, I think supporting people, younger people through an assessment and a diagnosis if that was applicable. But what I did notice at the time, as you said, that I had a high proportion of women coming to the service who were women of a certain age, who were possibly perimenopausal, menopausal, who were experiencing anxiety, distress, brain fog, problems of concentration. And they’d been to the GP. The GP had done, as I said earlier, I think ruled out any possible treatable conditions, often treated somebody for depression as well. And actually they found that their symptoms hadn’t improved. So these women had pushed for a referral to the memory service quite rightly, but actually when we did cognitive testing, extensive cognitive testing, sometimes brain scans as well, there was no evidence that they had dementia. And at that time, I would usually have obviously a very detailed conversation with them, supporting them, but really helping them understand that actually this probably relates to perimenopause, menopause. But I didn’t at that time follow up the conversation with and please go back to your GP and also HRT. It just wasn’t on the agenda then. And I feel actually I had a bit of a light bulb moment really thinking about my own symptoms of perimenopause and menopause, which have been going on, gosh, 12, 13 years. And I only started HRT last year and I hadn’t realised the importance of HRT and the impact it can have on improving your quality of life. So if I could time travel back now to that memory service, I would certainly be advocating that these women speak to their GP about HRT. And as I say, when I say reflect back, it makes me very, very sad that I didn’t have that knowledge then. So I’m very keen for professionals to really take that on board and advocate that women ask for HRT or, you know, be assessed for where it might not be suitable.
Lauren Redfern [00:12:25] But and I think even just being aware that memory and cognitive issues can be really related to perimenopause and menopause, because I think I mean, it’s so interesting when I talk to people about symptoms still. I think even though we’re getting much closer towards a general awareness in the population that perimenopause and menopause isn’t just hot flushes, I definitely think that you still hear that colloquially, the idea of it being a very kind of physical experience as opposed to cognitive as well. So low mood, depression, anxiety and these memory issues are all associated with perimenopause, menopause and declining hormones. But we don’t really think of it in that way.
Jules Knight [00:13:00] It had never crossed my mind. It really hadn’t. And I again, I feel quite sad as a healthcare professional, as a mental health nurse primarily that I hadn’t realised how menopause and perimenopause can impact on somebody. As I said, I lived with my symptoms for 12, 13 years. The symptoms are far and wide, as you said. You know, memory problems is a big thing, concentration, mood actually does play a part in that because of the symptoms you’re experiencing, it does affect your mood, particularly if you’re living with them long term. Sleep deprivation was a big thing for me. I did sleep, but the quality of sleep was very poor and that’s changed significantly. And of course if you sleep well, the next day when you wake up, your concentration is better, you’re more able to get through the day. So it’s not just physical, it is mental health as well. But they’re so entwined. It’s important that we look at the person holistically. And I think medically in the medical profession as nurses, we can look at people for what they’ve come to see us for. So looking back to that nurse in the memory service, I was looking at the person, looking at them to decide whether, you know, do they have dementia or is this something else? And then referring them on back to their GP, but not actually looking holistically at what was going on at that time. So I feel I’ve learnt a lot in the past year, 18 months and I feel very passionate about memory services, about individuals who are working in dementia services to really understand the impacts of menopause and perimenopause on women. It’s so important and equally for women who do have a diagnosis of young onset, actually it’s really about them getting to the GP as well and getting prescribed HRT where appropriate because it can reduce their symptoms and give them a better quality of life.
Lauren Redfern [00:15:03] I want to ask a little bit about, obviously, we’ve mentioned it and not really even defined the terms, but when we’re talking about young onset dementia, what sort of age range would this include for you in terms of the patients that you see? And why is intervention and diagnosis important at that time?
Jules Knight [00:15:20] So young onset dementia is essentially anybody that experiences dementia symptoms under the age of 65. It’s a cut-off point because generally anyone over the age of 65 is considered an older person. So the cut-off point is at 65, but in people who are under 65 because symptoms start under 65, they tend to experience a broader range of rarer dementias. So we have over 200 subtypes of dementia. Some of them are quite rare. Some of them are more common. So the most common dementia for under 65 is Alzheimer’s disease, which obviously people over 65 experience as well. But actually, when you’re younger, the types of symptoms that you have with that dementia can be quite different. So we speak about… Or when we think about, I should say, Alzheimers disease, we often think about memory problems. That’s the first symptom that we think about with dementia, actually, when I ask people. But actually, when you’re under 65, those symptoms can be quite different. Memory problems might come along, but actually people can experience problems with planning, decision making, changes in their personality, changes in their behaviour. They might not be aware of those changes in their behaviour, but it will be their family and friends noticing them doing things that are quite out of character. They may become cold and distant, so relationships change. They may struggle, for example, getting to work. So a journey that you’ve done for many years, perhaps negotiating the London Underground, you’ve always taken the same route over many years, but actually it becomes a real problem. You find yourself getting lost. So the symptoms that people experience can be quite different. It’s generally harder for people to get a diagnosis when they’re younger as well. It can take roughly, I think it’s about four years, which is twice as long as somebody that’s older. And again, that relates back to the symptoms being more unusual. So they’re not always recognised by healthcare professionals. As we mentioned, people usually think of memory problems, so GPs are looking out for memory problems for dementia, but actually if someone is experiencing those symptoms and they’re getting consistently worse over time because dementia is progressive, then we would always advise a trip to the GP. And if you’re not successful in getting the support you need, we would say go back, see another GP in your practice.
Lauren Redfern [00:18:03] Talk to someone else yeah.
Jules Knight [00:18:04] Talk to somebody else and get that referral. I guess it’s quite common to hear that now that we did have to go back to the GP again and again. It might be those telephone consultations, it might be face to face, and it might be that you need actually a family member or friend to help explain the symptoms as well, and hopefully they could assist you in getting the support that you need. So people then tend to be referred to memory services, although again, for younger people the pathways to getting a diagnosis can often be quite fragmented. So for older people, they generally refer to memory services, but for younger people it’s really dependent on what services are in the area. But it usually is a referral to a memory service, but then possibly referral onto urology. It just depends on how the services are set up. So that’s why it can take some time to get a diagnosis. It can be really challenging, actually, for families.
Lauren Redfern [00:19:02] Yeah. And I mean, that sort of brings me on to what I wanted to ask you as well, which is that your role as an admiral nurse is involved with working closely with your patients, families and loved ones. And I wondered if you could talk to us a little bit about why this approach is important and what the rationale is and why that comes into play.
Jules Knight [00:19:21] Essentially I mean, Dementia UK as a charity was set up around 30 years ago. I don’t know the exact year actually.
Lauren Redfern [00:19:28] We won’t test you I promise.
Jules Knight [00:19:29] Don’t test me on that. But the family who set the charity up, they had lived with the patriarch of the family. So Dad had vascular dementia and they were in the fortunate position to be able to afford care. So private care if they needed it, but they really struggled to get the support that they needed. They couldn’t find services to support them. And what they did in the honour of Dad when Dad passed away was set up Dementia UK and they worked really closely with families of people with dementia in finding out what they needed to really support them along the journey with dementia and the families at that time reported that they would really like to have a nurse to support them on that journey who understands the role of the family, and also how a person with dementia can change over time with the dementia. So that’s essentially how Dementia UK was set up and the name admiral nurse’s actually comes from Joseph Levy and he was a very keen sailor actually, and his nickname was Admiral Joe. So that’s how we ended up being called admiral nurses. So it’s a really lovely, very family centred charity, if you like. And essentially from that time we’ve grown in terms of being an organisation and we have almost 400 admiral nurses now across the UK in all manner of different settings. But essentially it’s about supporting the family and that includes the person with dementia. As the person which eventually progresses with the disease, their needs change, they can become or it can become very difficult for the family to manage those changes and understand those changes. And the admiral nurses role really is to support that family in supporting a person with dementia. We worked together with the person with dementia as well. It’s quite a fluid approach, but it’s a very family centred approach and it’s really to help them navigate those challenges, to access the support they need in terms of care, and also to help them really understand the changes that happen with the person but on an emotional level as well. So it’s about coming to terms with the loss and the bereavement that they feel through that journey. Often carers who I work with will explain that they’re feeling bereavement and loss. We refer to it as anticipatory bereavement, but with that comes all the emotions that you would have with a bereavement. With the death of a loved one, you can feel angry, depressed, sad, etc. So it’s really helping the family deal with those emotions and coming to terms with the situation that they find themselves in.
Lauren Redfern [00:22:21] Yeah, and I imagine that must be quite intense as well when you are working with younger patients too, because I suppose there’s that sense of also it being rarer and not really expecting it. So it changing your life quite drastically.
Jules Knight [00:22:33] It’s a completely different journey. It’s a completely different time of life, actually. If you think about being diagnosed in your thirties, your forties, you fifties, it’s a time of your life when you are hopefully enjoying work. Hopefully, you know, you’ve got a family, you might have children, you probably also have a lot of financial commitments as well. I think that’s one of the really big struggles for families with young onset dementia. You might have a mortgage, for example. Your employment could be at risk. Essentially, when you’re diagnosed with dementia, your employer should be supporting you, should be making reasonable adjustments to enable you to work. But there may actually come a time where work just isn’t possible. So you’re looking at perhaps the family moving down to one income and actually the person, the carer may still work, but at some point they may also have to give up work. So it can be a real challenge for families. And often life changing decisions have to be made around where people live and how they move forward. You’re also looking at families having children. And for the children, I think is particularly challenging. You might have children in school, children needing to go to university. Children who are taking on caring roles actually in the situation. And for them, there can be a lot of guilt around moving on with their lives. It can be really challenging.
Lauren Redfern [00:24:04] Absolutely. And need that additional support, I guess.
Jules Knight [00:24:07] Yeah. Yeah. And I think also for children because the parents dementia’s going to progress and it’s going to be a challenging future. It’s really important that they have conversations around end of life, which can be very difficult in the early stages. But it’s essential that they are supported in having those conversations with that parent, because there may come a time where that parent’s not able to engage.
Lauren Redfern [00:24:34] Absolutely. I mentioned in the introduction a little bit, and we are making lots of links now between lack of estrogen and the impact that this can have on the brain. And we know that obviously the body and the brain has estrogen receptors sort of all over it. And the lack of estrogen can cause a number of symptoms and issues. And I wondered what you could tell us about use of HRT in patients that have received a diagnosis of dementia, whether this is common and if so, whether you’ve seen any associated benefits or how you’d need to navigate that really, I guess.
Jules Knight [00:25:07] Just from my experience, I would say at the moment it’s not common for women with young onset dementia to have been prescribed HRT.
Lauren Redfern [00:25:17] Interesting.
Jules Knight [00:25:18] It’s very interesting. It’s something within Dementia UK that we’re working with our admiral nurses on. Earlier this year we had a webinar and within the webinar that was essentially around sexual health. So we spoke about women and menopause and perimenopause and we wanted our admiral nurses to have a really good understanding of what that is for them as women because the majority of nurses are women. I was looking at the stats on this the other day, actually. I think there’s one male nurse to every nine female nurses.
Lauren Redfern [00:25:52] Oh, wow. Okay.
Jules Knight [00:25:53] Don’t quote me. But I’m sure that’s what it said. So, you know, for nurses and the majority of us are women, it’s really important for ourselves that we understand the impacts of perimenopause and menopause. And actually, when we understand that for ourselves, it’s easier for us to then support any women that we’re working with through that, so although a lot of admiral nurses will support carers where the person with dementia is older in their sixties, seventies, eighties. It’s still really important that we understand it because that main carer could be a woman in her fifties, a daughter. And also the impacts of the reduction in hormone affects women as they get older. It doesn’t stop. So all round, if you like, we need to have a really good, broad understanding of menopause and perimenopause. So we have supported our admiral nurses in understanding the impact that it can have. We actually work with The Menopause Charity around that, so we’re very delighted that they could come along and support us with that. But it’s something that we need to continue chipping away at and ensuring that any women that we work with who has young onset dementia understands that they can be supported to have HRT, obviously with the GP and if it’s appropriate, but we really should be encouraging them to go to the GP. Interestingly, when we had the webinar, we had two ladies speaking. We pre-recorded a session of two ladies with them and she’s speaking about their experiences of menopause and perimenopause. And they were very open, very frank and really did acknowledge the impacts of perimenopause, menopause. They struggled to tease out whether the symptoms were related to the dementia or to perimenopause and menopause. At times they said it’s really difficult to tease out. But actually what they took away from that day is that they made an appointment with their GP and both of those ladies are now on HRT.
Lauren Redfern [00:28:03] And feeling better?
Jules Knight [00:28:04] And feeling better, sleeping better symptoms are better. So I think it’s just something we need to keep pushing and keep reminding on this is that it’s really important that they consider this. It can have such an impact on a family. Another example that springs to mind is an admiral nurse contacted me about a family situation where the lady who had dementia was really struggling. She was 45 years old, really struggling with managing her symptoms of dementia. Her teenage children, she’s a single mum, were really struggling looking after mum and one of the teenage children has a daughter who is entering into puberty had just started their periods and her hormones were all over the place actually, you know, she was then dealing with mum whose hormones were all over the place for want of a better term. So it was about encouraging this admiral nurse to have discussions around sexual health because that’s really important. I think sometimes that’s something we miss. So it’s really important that we do that. And actually I suggested that she encourage the lady with dementia to visit the GP and have conversations around perimenopause, menopause, which she could potentially do with the admiral nurse as well if she wasn’t able to. But yeah, it’s definitely something that we need to keep on our agenda and you know, it almost needs to be, for want of a better word, again, tick box. We need to really think about discussing it in depth with families.
Lauren Redfern [00:29:38] Yeah, absolutely. I wondered if you had any advice that you would offer to healthcare professionals regarding this crossover between symptoms of the perimenopause and menopause and dementia, what that would be and what you’d really like to stress and emphasise to them?
Jules Knight [00:29:55] Yeah, I think you’re absolutely right. There is a big crossover in terms of, you know, the brain fog, the memory problems, the concentration problems, actually the depressive symptoms as well, the low mood. It presents in a very, very similar way to dementia. Dementia and perimenopause and menopause, very similar. It’s very difficult to tease out what actually is the cause. Very important to look at people’s age, to look at other symptoms that they’re experiencing as well. So if, for example, there’s been changes in the periods that women experience, if they’ve become lighter, heavy, more frequent, etc., that may be an indication that perimenopause is playing a part. But it’s about having those really holistic discussions, really trying to figure out what is causing this and not just having a surface conversation with the GP. So yeah, really, really having a deep conversation covering every area. And for the professionals, having a really good understanding of perimenopause and menopause and the symptoms, as you said earlier. Often people think it’s just hot flushes.
Lauren Redfern [00:31:11] Yes.
Jules Knight [00:31:12] And it’s so much more than that. So it’s about having a really good understanding of the impact that it can have. And as I say, I think if you’re uncertain as to what the cause is, it would be about having a conversation with the GP about HRT and trialling that. But I think again it’s important to remember that it takes a while to get the HRT right. It may be that you need to try different types of HRT.
Lauren Redfern [00:31:40] Absolutely. I think, sadly, that’s all we’ve got time to discuss today Jules and I just want to thank you so much for joining me. It’s been a really fascinating conversation. I like to end these podcasts by just asking those that have joined me if they have any final thoughts or take home messages that they’d like to leave those listening with. So anything on what we’ve talked about today really.
Jules Knight [00:32:01] Just to say it’s been absolutely amazing being able to come and talk about dementia and perimenopause and menopause. What I would say is if anyone is really worried, then please do go to your GP. Do have those conversations with your GP. If you feel that you need support, if you feel that you need somebody to talk to, who will understand your symptoms and you want to talk about it first or after you’ve been to the GP, then you can always contact our helpline at Dementia UK and to find the details of that you would just Google, Dementia UK, and all the details are on that.
Lauren Redfern [00:32:34] That’s lovely. Great. Well, thank you so much. And we’ll speak again soon.
Jules Knight [00:32:37] Thank you.
Lauren Redfern [00:32:41] We would love for you to join our collective of professionals passionate about the menopause. Visit and NHMenopauseSociety.org to become an associate. You’ll receive regular webinars and advice from our experts as well as opportunities to network and connect with the latest research from around the world. You can follow us on twitter at @NHMenoSociety. And don’t forget to tell your colleagues about the Newson Health Menopause Society.