Instant Genius - A neuroscientist’s guide to living with dementia

Episode Date: July 24, 2025

Dementia doesn’t have to be terrifying. We tend to think of neurocognitive decline as something to be feared and avoided, but as the population ages, more and more of us are being diagnosed with dementia – so it might be helpful to know more about it. In this episode, we speak to Dr Sabina Brennan, a neuroscientist, psychologist, bestselling author and host of the Super Brain podcast. Her new book, Still Me: a neuroscientist’s guide to caring for someone with dementia, offers practical advice for approaching dementia care in a loving and brain-healthy way. Sabina tells us about her own experiences caring for her mother, the different ways neurocognitive decline can manifest itself, and how to find joy and fulfilment alongside dementia. To get the exclusive gift box from Shokz, order via this link: ⁠https://bit.ly/4kFt10l⁠ Learn more about your ad choices. Visit podcastchoices.com/adchoices

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I'm Hattie Wilmoth, trends editor at BBC Science Focus. Dementia doesn't have to be terrifying. We tend to think of neurocognitive decline as something to be feared and avoided, but as the population ages, more and more of us are being diagnosed with dementia, so it might be helpful to know a bit more about it. In this episode, we speak to Dr. Sabina Brennan, a neuroscientist psychologist, best-selling author and host of the Super Brain podcast. Her new book, Still Me, A Neuroscientist's Guide to Caring for Someone with Dementia,

offers practical advice for approaching dementia care in a loving and brain-healthy way. Sabina tells us about her own experiences caring for her mother, the different ways neurocognitive decline can manifest itself, and how to find joy and fulfillment alongside dementia. Hi, Sabina, welcome to the podcast. Thank you so much for joining me. Thank you so much for inviting me on. So today we're going to be talking about your book, Still Me, which is all about dementia, giving advice to people with dementia and also their caring partners.

And we'll get onto what that means a little bit later. But first of all, could you tell me a little bit about why you're so interested in dementia personally? Well, I suppose personally, the perspective I have is that my own mom had dementia. and so I would have cared for her. And I do say in the book that, you know, if you take part in any form of caring for a loved one with dementia, whether that's a couple of hours a week or 24-7,

you are a care partner. You are involved in that journey. I was working full-time at the time. I had two sons myself, but, you know, mum spent time in acute hospital and she spent time in nursing home. And so you tend to do daily visits. sometimes twice a day. And also we kind of took mum into our home at the weekends. So I've been on

that journey myself. And I suppose in a way, this book, it's kind of funny. I had written my first book and I kind of smile at it now because when I finish a book now, it's like, oh my God, I need a break. But when I finished my first book, which is 100 days for younger brain, which is all about, you know, how to keep your brain healthy and how to reduce your risk of development. developing dementia. I just felt like I wanted to write more and I knew what I wanted to write about and I wanted to write about caring and within a month almost the book has three sections. Within a month I nearly had the bones of that first section of the book. It's changed dramatically as we've worked through it and edited it but just the information flowed out and in a way I think part of it was

a catharsis. It allowed me work through some of my own issues around caring but also allowed me time to understand and do research on how the caring journey could be improved for all concerned. And to also share my own experiences and my own mistakes so that people understand, you know, that, you know, that's part of the journey is that we can't all be perfect. But there are things that we can learn from science that can actually really help improve our caregiving experience and improve the quality of life for the person that we care for. So that, I suppose, is the personal perspective. From a professional perspective for years before my mum was diagnosed with dementia,

I was working in that space. My PhD was on how it was the electrophysiological and neuropsychological indices of cognitive decline in aging. I only remember that name because I was giving a talk class. night and someone had said something, what was your PhD about? And I went, oh my God, what was the title? So, yes, essentially I looked at the electrical activity in the brain, you know, when people were performing memory tasks and people of various ages, older people, etc. And so I was very interested in, you know, in that, from that perspective, even if your loved one has memory loss, their

emotional memory is not affected. And so even if they may not know your name, name or remember what you did yesterday, they will be emotionally connected to you and they will know whether they have a good time with you or not. And that's why it's so important. And one of the piece of advice that I give in the book is to focus on the present and to have fun and enjoyment because your loved one will, you know, deep in their brain. They will recognize that you are a person that they love being with. And that's much more important than someone knowing your name or the fact that you brought them chocolates yesterday. And that's one common misconception about dementia. What are some others? Oh, I think there's lots of

misconceptions surrounding dementia. I suppose the biggest misconception is that dementia somehow takes the person away and that you're just left with this empty shell. And actually, that's one of my biggest book bears. And I do write about it in the book about I'm of that age where if I bump into people that I went to school with, you know, you kind of, are your parents still alive? You know, that's kind of the question. You know, and then you'll get someone and they'll say, oh, yeah, but they have dementia. So, you know, it's like they're gone. And you kind of go, no, they're not gone.

You know, the person, that person, your father, your mother, your sibling, if that's the case, your spouse is still there. But their mechanisms of communication have been distorted or changed by a brain disease. And I think it's really, and this is why I think science is so important is, that we must really talk about dementia as a disease that impacts on functioning. And it's no different than a disease that impacts on your heart function or a disease that impacts on your ability to walk. It is a disease that impacts on certain cognitive abilities. But another misconception in a way is that it impacts on all of your cognitive abilities, you know? And so people tend to just look at what's gone or what's missing or what's malice.

functioning and forget that there's huge amount of retained abilities. And we see more of what we focus on. And that's why I think it's really important, you know, the dialogue in the public, the dialogue in media, and also how we treat people living with dementia. Even though things have moved on and people are talking more openly about dementia, I still think there is a practice, I used to say it, of warehousing people with dementia out in care homes away from society. There is absolutely no scientific basis for keeping people with dementia altogether in one place. And in fact, actually, the science would suggest that that's not very good because they need social stimulation and they need interaction and they need engagement with life and with doing things.

And if you put a bunch of people together in a room who are all struggling with that, well, then who's going to stimulate who? And I mean, I have referred to them as the leper colonies of our time. But in fairness to when there was leper colonies, that's because the disease was contagious. And dementia is not contagious. And everybody in society benefits from interacting with people with dementia, which is why some of these places that have, and I remember a time when people thought this was a horrific idea.

But it's a good idea where you have. play schools and after school clubs and those linked in with dementia care. I mean, at the end of the day, our commonality is that we are human. And I honestly believe if people require care, you know, during the daytime in a community, it should be a community of people who are being cared for, reflecting all aspects of society and people will benefit. But yeah, kind of, they kind of are my bug bears is the dehumanization, you know. There's a narrative around. around dementia that it's the worst thing that someone could possibly experience. And many people say that if they were diagnosed with dementia, they would rather not continue living. What do you think about

that narrative? Nobody wants to develop dementia. You know, nobody wants to go blind. You know, I mean, that's always been something that I would worry about. Or, you know, nobody wants those. But the fact of the matter is, it is part of our lives. And I actually think it's, well, I think it's dehumanizing. you know, it actually takes away the personhood of the individual with dementia. That then, of course, adds to people's fears, and it prevents people for going and seeking an early diagnosis, and an early diagnosis used to be kind of controversial. You'd say, oh, why would we tell people we have dementia if we don't have any cures? But we've moved on, and we know a lot more about brain health, and we know a lot more about

interventions and supporting people and stimulating people. we also know that the earlier you have a diagnosis, the more control you have over your care later on and how you would like the rest of your life to go. And you can make advanced care directives, not just about, you know, the financial side of things, but the personal side of things too, that you can let people know what you want to happen and what you don't want to happen. So yes, I think the narrative has to change. People talk about the long goodbye, or the living death. And to me, that's horrific.

It's very insulting to the individuals. I understand where people get that from. And I do think part of the problem is we don't integrate people with dementia in society. So people are working off misinformation without ever having contact with someone who has dementia. I talk about it in my book, a friend of mine, and she's really one of my heroes, Helen Ratchford-Brennan. and she was diagnosed with early onset dementia at 62. She had a very high flying career. She knew there was something wrong

and she immediately resigned from her job. Well. Because she couldn't bear that she might underperform and not perform or whatever. And she went into a terrible state of a depression. Cutting a very long story short, someone said to her, well, look, you know, would you not consider being involved in research?

It might give you a sense of, you know, that you're doing something, if not to help you, to help other people. And as it happened, she came to our university just at the right time, just as we were doing some cognitive rehabilitation therapy and a very small group of people. I think we had two or three was our sample. And she did that with us. And she credits it with being completely life-changing and transformative. And she's still going strong. I think she must be 73, 74 now. She's a global ambassador for her. her dementia. She has met presidents. She's spoken to the world health organization. She is a prime example of how with the right supports and the right stimulation and the right purpose and meaning

in life, you can continue to live and engage with a very meaningful life. She's a very special person. Not everybody is going to have that, but not everybody is ever going to have that, whether they have got dementia or not. But I think seeing a diagnosis as a death sentence is one of the worst things that you can do. Ambition comes in all shapes and sizes. At First Citizens Bank, we roll with your goals because we're built for what you're building.

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So now let's move on to the different types of dementia. So these are, you set these out and explain these in. your book. So what are the different types of dementia? What are the symptoms? And also, what happens in the brain? Yeah, I think first of all it's important to say is that dementia is not a disease in and of itself. It's just, it describes a collection of symptoms caused by various brain diseases. And these diseases damage brain cells, especially in areas responsible for memory, for language, and for learning. And then to confuse matters more, of course, the term dementia is also used is an umbrella term for the neurological conditions.

Basically, the diseases that cause dementia can affect various cognitive domains. So complex attention, executive function, learning and memory as we know, language as we know. But it can also affect spatial navigation, you know, perceptual motor function and social cognition. Alzheimer's disease is the most common form of dementia. It represents about 60 to 70 cases of dementia. And it is caused by atrophy, cell death. And the most prominent theory is that that is a consequence of abnormal proteins in the brain. And people with dementia often lack awareness of their condition.

And contrary to popular belief, not everyone with Alzheimer's disease has memory problems. One in ten people have what's called non-amnestic Alzheimer's, which means they don't have Alzheimer's disease. And that's classified. Alzheimer's has three stages, really. Early stages where the symptoms are mild. middle stage where they'll need some help with daily tasks of living and then in the later stage, which is what I think people tend to confuse with the whole trajectory of Alzheimer's disease. So with the later stage, it gets really challenging and other issues come in because the brain stem

starts to be affected. And so the person with dementia can struggle to swallow or maintain their balance and they become frail and lose control of their bowel movements and maybe lose their speech. and that's because the disease has progressed into the brain stem. But that's not, that's really the end stage. And actually often people die before they get to that end stage. So the other stages are, you know, quite, you know, people can live quite well with them. Vascular dementia is the next most common type of dementia. And as the name suggests, it is associated with blocked or narrowed blood vessels.

And it will often follow a stroke or a series of mini stroke. and then the trajectory, whereas Alzheimer's disease is a neurodegenerative disease whereby the disease progresses over time. Now, depending on how healthy your brain is, you can, if you have poor cognitive reserve, you haven't lived a brain healthy lifestyle, your decline will be very slow over several years. If you have lived a brain healthy lifestyle and you've built up brain reserves. You may have the disease in your brain, but not have the dementia symptoms and you live a normal life until a much later stage in the disease where you then will probably have a precipative drop off and you'll have serious symptoms, but you'll have had much more time, you know, in possession of

your independence. Vascular dementia in contrast is stepwise. It occurs suddenly after a stroke or something. But if you have no other strokes or no other mini strokes, you may just stay. You may just stay at that level of impairment. Or if over time you have another one or you have gradual small strokes, you may actually have, you know, a gradual decline. Dementia with Louis Bollies, so the vascular dementia is about 10 to 20 percent of cases. Dementia with Louie Bodies is about 10 to 15 percent of cases and it's associated with abnormal clumps of protein in the brain and the symptoms are fluctuating and they can fluctuate over a period of months, but they can fluctuate and vary just within a single day. There's rather unusual symptoms with Louisbody dementia. There can be

hallucinations and prolonged confusion and sleeping during the day and not sleeping at night and fainting and dizziness. And so you can see these are quite different. And it really is something that bothers me is that people say their parents have dementia and you say what kind and they say, oh, I don't know. I assume it's Alzheimer's. You know, And I've spoken to doctors to say, oh, well, people don't know the difference. And I'm kind of going to go, well, that's insulting to the person. If you tell them the difference, then they can learn about the different symptoms that they may have to deal with. Frontotemporal dementia is about 5 to 10% of people.

And that is one because our personality sort of resides in our frontal lobes, in that our personality really is our patterns of behavior that we've learned over our lifespan. When your frontal lobes are damaged by the disease, you can behave in different ways. And so your patterns of behavior change. And that describes what you and I would say is, oh, his personality completely changed. But I do help, I think it helps to understand that, you know, our personality is not a thing. It's our patterns of behavior. And so the disease is changing those patterns or preventing access to inhibiting behaviors.

you know, we know it's not appropriate, you know, to use bad language in front of some people or vice versa, you know, or something like that. And people then will say things that they normally wouldn't have said. My own mum had mixed dementia, which meant she had a little bit of this and a little bit of that. And so she, towards the end, became quite frontal. And so she would say things inappropriately. She would use curse words that I never knew. She was even aware existed. And I do think, you know, that wasn't her fault.

sometimes she would get an enlightened feeling and saying, did I do something? Did I say something I shouldn't have? And I said, Mom, don't be worrying about it. I said, your brain is doing funny things. It's malfunctioning. Nothing you can do about it. It's just done something. Don't be feeling bad if you behaved differently. And I kind of think that's important. So yeah, the mixed dementia is quite common. The older you get. So, you know, by the time you've come to a diagnosis, if you're in your 80s, you may have a little bit of this and a little bit of that. And then finally, just to sort of mention, there is young or early onset dementia,

which I mentioned that my friend had. Alzheimer's disease is still the most common form of early onset. So that's any dementia symptoms that occur before the age of 65. But there are many, many types of young onset disease. There are less people with young onset, but more types. and some of them are very, very rare. So really, that's kind of the main types of dementia in a nutshell, I suppose, as close as you can to give any sort of real nuance to it.

Thank you. And the book starts by focusing not on people with dementia, but those who are looking after them. You call them their care partners or their caring partners. Why do you do that? I do that because I think that when we put ourselves in a caring role, out of love and out of well-meaning intention, we can influence the power dynamic in the relationship.

And as a carer, we often can feel that our role is to decide and to do things for someone. And I think a partnership is a much more appropriate thing, particularly, you know, if most relationships are partnerships of some kind, whether it's a spousal partnership or a mother-daughter, you know, they are a relationship. And I think there is that risk that, you know, when we see ourselves as the carer, we are in a position of power and we disempower the person with dementia, not intentionally. And I think what's really key is we tend to think in society that if we do things for someone,

we are showing them how much we care and how much we love them. However, when it comes to dementia, if you do things for that person, you are, and there's no nice way to say this, but you are accelerating their disease because you are depriving them from the privilege and opportunity to do things for themselves. It's actually easier to do something for someone with dementia as the disease progresses than it is to do it with them, but it is kinder to do it with them. So gradually changes, you know, the support required will change over time. You've got to let people live their own lives. I mean, doing nothing, it's completely overrated. How can people try to live a good life with dementia? Well, how can you live a good life without dementia? It's the exact same. You do things that you enjoy doing.

You set goals. You, you know, you engage with other people. You socialize. You exercise. You learn new things. It's the exact same. I mean, that person living inside has the same desires, wishes, needs as anyone else. And I think that's what's really important not to forget. I wanted to mention that in your book, you've got lots of little stories, examples of people with dementia and people involved in care. with that person. You mentioned someone called Nancy, who knew that she had a high risk of dementia, so she wrote everything that she liked and didn't like and everything she wanted in her diary before giving that diary to her adult children, so they knew exactly what to do when they were making decisions. They didn't have to ask her, they didn't have to argue amongst themselves, they already had it written down and they knew exactly what to do. The other thing, another sort of version of diary writing that you also recommend, which is observing the person with

dementia, writing down the kind of things that trigger them. So someone mentioned in the book that their dad would get very upset and make a lot of noise whenever she was on a phone call. And she realized through writing down that these kind of outbursts would happen as soon as the ringtone would go off. So it wasn't that she was talking, it was just the ringtone and just through changing the ringtone, he was a lot calmer, things like that. Yeah, absolutely. She had thought that her dad was acting up like a child because she was giving her attention somewhere else. Quite a reasonable thing to assume. And she had asked someone for advice and they said,

keep a diary. And she said, I know what it is. But she felt she couldn't ask for a second suggestion without trying it. And then she made that nuanced, slight difference that, oh, it's when the ringtone goes off. And then she noticed it when a car alarm went off. So it was the sound. So the solution was to change her ringtone to a piece of music that she knew that her dad liked and this terrible aggression and agitation that was causing terrible problem in her life.

She worked from home. She was able to care for her dad, but she needed to take phone calls. And that became difficult because he was agitated during that. So that kind of observation. And I also, to focus on the positive too, you can observe what precedes really good days or really good afternoons and also don't assume that what works one day will work the next day. That person with dementia is human just like you are. You can listen to one song one day and love it and want to dance with it and then two weeks later it can annoy the hell out of you. And I would even see that with my mom. You know, some days, she used to love Valdoinigan. So, I mean, the internet is there. It's just a treasure trove of tools that you can use for people. And I would

play music for mom and she'd sing along and she'd love it and then the very next day I could go to play and she said, oh, don't do that please. It makes me depressed. Makes me sad. She's a normal human being whose emotions change on different days. We've talked a lot about kind of recognizing a person's sameness and humanity and individuality throughout their experience with dementia. What are your other kind of pieces of advice for helping either slow the decline? of the disease or just help someone find hope and joy and fulfillment while living with it? Yeah, I mean, there are big questions. I think that it's really important to maintain a brain healthy lifestyle for both the person

living with dementia and the care partner. And that involves physical exercise, staying socially engaged. I mean, that's critical. I mean, there will be a time after diagnosis where people will just. want to withdraw into themselves. There's a big risk if you're a couple and in this unit that you end up. Actually, one of the people I spoke to for the book said that COVID was no different for them because they had been cocooning before COVID because all their friends disappeared and there was just him and his wife with dementia. Try and avoid that at all costs. So from the moment of diagnosis,

make a concerted effort to maintain your social connections. And that's for, for both the person with dementia and the care partner. And I think it's really critical that the person providing the care doesn't just become a care partner. They are entitled to other aspects of their life and other relationships without guilt and to try and set things in place that it can allow you to have a life.

The care that you provide will be much better if you have a life outside of caring also. So social engagement is critical. Mental stimulation is really important doing things. I mean, so many people, what the issue is with, and this isn't just with dementia, this happens with older people. It's just sheer boredom. They're sitting there doing nothing.

And sitting there expected that a TV screen is going to be stimulating enough. It's not. And there are plenty of things that people can do and take part in and engage in. And interestingly, it doesn't, I mean, usually, you know, doing something that you always enjoy doing, I think it's very important to allow people feel like they're contributing to the community or the household or the relationship that they live in. I used to save pairing socks from my mom used to come to me at the weekends. So when I would do the ironing, I would hand her the pillowcases to fold and I would give her a bag of socks to pair. It could take her hours.

But she felt like she was, you know, doing something. when we prepared lunch, I'd say, you're doing those, you're on that duty, you know, and it matters. Give them the gift of your support also. And that support can be very, very simple ways like saying, I'm going for a walk. Either would you like me to take your husband for a walk, would they like to come with me or there's a group of us going, be inclusive, be dementia friendly. You'll be surprised how kind people are, you know, if you do include people. And you'll be doing like a great service. I mean, my mum before she went into hospital and then into nursing home,

she had a crew of people. My parents were kind of devoutly religious and they would go to mass every morning. And that's one of the benefits. I'm not religious, but one of the benefits is religiosity, which is the socializing associated with it. And so my mom and dad's social life was really around their religious. religiosity going to mass every morning and sure they'd be gone for hours because they'd be chatting on the road to their friends or whatever. So it's the socialising. So my mom had a bunch of friends. My dad

had died several years previously. My mom had a bunch of friends and none of them came to visit her in the few years she was in her nursing home. And when she died, I said to myself, gosh, my big fear is that there won't be very many people at the funeral. The church was packed. All her old were there and I gave the eulogy and I just said I understand why you stayed away I do people are afraid they don't know how to interact I said mom was still mum you know she would have chatted with you she would have engaged with you or whatever I said I totally understand why you stayed away and I thank you that you're here to show but I said if the next one of you in the group goes on that journey go visit them go spend time with them it's not scary at all you know it really isn't

Thank you for listening to this episode of Instant Genius, brought to you from the team behind BBC Science Focus. That was Dr Sabina Brennan. To discover more about dementia, check out her latest book, Still Me, a neuroscientist's guide to caring for someone with dementia, which is out now. If you liked what you just heard, then please consider subscribing to Instant Genius wherever you like to listen to podcasts. And if you'd like to watch our presenters and guests speaking in person, then you can also check out our YouTube channel. at Science Focus. The current issue of BBC Science Focus magazine is out now. Pick up a copy wherever you buy your favourite magazines or download us on your app store of choice. You can also find us on Apple News or online at ScienceFocus.com. This podcast is sponsored by Name, Audio and Focal. The texture

and emotional depth of music can be lost through digital sources or poor signal. Name audio believes you can have digital precision with analogue warmth. Alongside friends, Acoustic Specialist Focal, Name creates high-end audio systems, combining innovation with craftsmanship, so you can listen to music, just as the artist intended. Discover more at nameaio.com.

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