Find your joy
After a diagnosis of dementia, we need to discover what people were good at once upon a time and creatively find a way for them to continue being a useful member of the family and of society
Karen Meenan, co-founder and director of Lewy Body Ireland, Senior Atlantic Fellow for Equity in Brain Health, founder of Making Hay Reminiscence Theatre, and founder volunteer of Forget-Me-Nots dementia-inclusive choir
Covered with ivy, the colonial house sat on a hill surrounded by vineyards and olive trees, exactly how you would expect an old farmhouse to do on any hill in Tuscany. In a pre-Internet time, the house’s factotum picked me up at the local station in his red, rickety van. He was a guy with unruly curly hair, a big gap in his smile, and a marked Tuscan accent that, in every sentence, made him gobble the letter “c” up. As we drove on snaky roads into the local forest, I had a glimpse of the signpost and I read a name that was forever planted in my childhood memories of black and white TV news. The guy said we were close to Mercatale - the “c” disappeared - and I froze in my seat, remembering the serial killer who terrified Italy some twenty years before. So, there I was on my way to a vacation, with my duffle bag on my knees, sitting in a van with a perfect stranger driving through a forest that stood for dead bodies under a white sheet. I thought about my family, and I wondered where my ability to get in trouble came from.
As I later learned, there are two cities that go by the same name, and I was heading to the one that had nothing to do with the newspapers’ headlines. Once we arrived, I immediately felt at home. Little things made my day: the child-like pleasure of feeling the gravel under my boots; the outside staircase that offered a peak of the starry night on my way to bed; a glimpse of a country mouse squirrelling along the storage wall. There were horses in the farm, their fur covered in mud from the fields where they roamed all year long. In winter, I brushed their long fur clean before breakfast, the horse’s and my breath met into one single column of smoke when I leaned down to clean its front legs on the cement floor of the courtyard. Sometimes I stood with the brush in my hand, taking in the whole scenery: the olive trees, the valley, the mist, all that - I knew - hadn’t change much from hundreds of years before. During one of my numerous stays, I learned about the local farmers and their rhymes competitions. Somehow, the story put roots into the guests’ minds and one summer morning we came up with the idea of creating a hay bale theatre to share a story, a song, a poem.
Fast forward twenty-five years, I have learned about another Stray Theatre based in Ireland called Making Hay Reminiscence Theatre - and I was immediately intrigued with the story of the founder, Karen Meenan. Karen is a founder volunteer with The Forget-Me-Nots dementia-inclusive choir which was founded by her sister Órla Horn in 2014 for their mother Kathleen Tierney who had Alzheimer’s Disease. This is a choir that unites older people and those affected by dementia with their caregivers, family members and friends. Karen is a Senior Atlantic Fellow for Equity in Brain Health in the Global Brain Health Institute (GBHI) based in Trinity College Dublin. GBHI is a fellowship program dedicated to protecting the world’s ageing populations from threats to brain health. There are many different forms of dementia, the most common worldwide being Alzheimer’s disease, which accounts for around 60% of the world’s 50 million people diagnosed with dementia. The second most common form is Lewy body dementia (LBD), which affects about 15-20% of people diagnosed with dementia. LBD, although common, is frequently undiagnosed in most parts of the world, including in Ireland where there are currently few specific supports for people living with LBD. As a result of her GBHI fellowship, Karen met with world experts in LBD and has set up Lewy Body Ireland (LBI), an awareness and support network for the estimated 10,000 people in Ireland who have been diagnosed with Lewy body disease. As co-founder and director of Lewy Body Ireland she aims to establish Ireland as one of the centres of excellence for the detection, treatment, and support of people with LBD in the world.
With her brisk chatting, Karen turned out to be my “wind rose” for dementia. The winds in the Mediterranean Sea got their names from the "wind rose" that the Venetian merchants, who ruled the seas some five hundred years ago, set on Zakynthos, an island off the Ionian coast of Greece. So, for instance, the Mistral takes its name from the main road that led to Venice (via Maestra), while the Sirocco is a wind coming from Syria, blowing therefore from the south-east. With her story, Karen opened a door I didn’t expect existed and what she showed me, despite the tragedy of the disease, is a rich territory. As the ancient wind rose demonstrates, what you perceive depends on your perspective: where you stand, what you look at, and what you stand for.
You did so much in your life, Karen. How did it all start?
I have a background in marketing and drama, so I have an interest in listening to people’s stories. As a marketer, the goal is to find out what people need and then sell it to them at a profit. As a dramatist, the goal is to listen to people’s stories and find the drama within to share with an audience. What I'm doing now with dementia is a little bit similar in as much as I'm listening to what people need, and trying to find out what services they require, and what supports they need. The difference with marketing being that we are setting up Lewy Body Ireland as a charity so there is no charge for anyone who wants to learn more about LBD. All too often I meet people who have had a very general diagnosis of ‘dementia’ or ‘a touch of dementia’ without getting the proper information about type or stage. Imagine if you were told you had ‘cancer’ or ‘a touch of cancer’ without being told what type or what stage? There are so many different types of dementia. My goal is to start a worldwide conversation that centres around ‘What Type’ and ‘What Stage’.
How did you move from marketing to dementia?
When my mother got Alzheimer's disease, it was my introduction to being very curious about dementia. Some types of dementia are hereditary, so I wondered if I should be worried about getting this disease? Will my kids have to worry about me? So, I started researching Alzheimer's disease (AD), and I found out that one of the main symptoms of AD affects short-term memory loss. My mother’s long-term memories were really good. She could remember vivid details from the past, but recent memories were forgotten instantly. She could remember whom she sat beside when she started school as a four-year-old girl, but she couldn’t remember that I sat with her in the kitchen having lunch the day before.
Many people have parents with dementia. What made you start a foundation?
It all boils down to where I came from, as our dad died very young. He died very suddenly of a massive heart attack at the age of 55 when I was just 13 years old. The only person we had left was our mother and we protected her; she was very central in our home. When Mam started to get Alzheimer’s, we needed to do as much as we could to support her and protect her because she was all we had left even though at that stage we were five grown adults. But that wasn't the point, she was our mam. She still retained long-term memory and she still loved to sing, so my sister Órla set up The Forget-Me-Nots Choir to help us all to re-connect with her through music. My other sister Fiona and I are founder volunteers and help Órla as much as we can. Eight years later, the choir is still very active, even throughout the pandemic with Zoom rehearsals every Tuesday and Friday.
What is the Forget-Me-Nots Choir?
It was set up originally to build community around singing old songs from the past, songs that Mam would have known, which would make her feel safe and secure. We set up this choir for Mam and her friends, some had dementia, and some didn't, but it was a community effort. It was to try and take away some of the stigma associated with living with dementia. In Ireland people would quite openly say, ‘My mother has cancer, or my father has cancer,’ but nobody wants to say, ‘My mother has dementia,’ because this is a disease nobody wants to talk about. We wanted to remove the stigma and allow her to feel supported and part of the community.
In the early days, it was just 15 people and a piano, now it’s a big choir doing nationwide performances before the pandemic with guest appearances on the television. The Forget-Me-Nots choir is now quite famous in Ireland and around the world. We had visiting choirs from America who came over to sing with us. Mam was diagnosed in 2013. The choir was set up in 2014, she died in 2016 and the choir is still running and has been a lifeline for the members during these very difficult pandemic times.
How was the Reminiscence Theatre born?
After my mother died in June 2016, I went back to college and did a B.A. in Drama to learn more about the connections between memory and the brain. My dissertation was about Reminiscence Theatre and its impact in the dementia community. I set up a theatre company called Making Hay Reminiscence Theatre in 2017. I went to schools, nursing homes and daycare centres looking for stories and weaved those stories into plays. I co-created three different plays with people who have dementia and with teenagers, as at that stage, my kids were teenagers and they were really into learning stories from old people, the stories of “what was it like in your day?” Teenagers and older adults have lots to talk about. The plays were ‘We Were All Young Once,’ ‘A Play with ME in it,’ and ‘The Lost in Time Bookshop’ which were co-created through several reminiscence workshops.
When the pandemic hit, and all theatres went dark, I had to find another way to collect these stories, so I got a qualification in researching, presenting, and producing radio. I thought about people who have a disability and can't make it to a theatre, but they still want to be involved and have their voices heard. They can't make it to a community hall, but they can still listen to the radio. After I completed my radio training, I was given a weekly show time every Monday evening 7-8pm on NearFM community radio. My first radio series ‘Reminiscence on the Radio’ was all about listening to the stories of my guests, some of whom had dementia, some of whom were caregivers, with the same kind of triggers, songs from the 1950s, from the 1960s or memories from the Olympics or the Eurovision in those years, or big news items like in 1955 when Rosa Parks sat on the bus, or the 1969 Moon landing, or personal events, like when people got married or got their first job. All these triggers helped to spark memories and start fascinating conversations.
How did this show work?
My guests might have forgotten what happened yesterday or how they were brought to the radio station, and it didn’t matter, because still they remembered vividly the day they got married, or the day they went on a small boat with their dad and sailed to Scotland when they were 12 years old. We had this amazing guest with dementia who was an Arctic sailor and who shared the story about his boat being trapped in the ice for three days surrounded by polar bears. He remembers that they fed salami to the bears to keep them contented until the ice melted sufficiently for the sailors to return home. The fact that this guest couldn’t remember how he was driven to the radio station didn’t matter. He remembered vividly the stuff that was important to him, and that’s the point. Dementia is a fascinating disease; we can so easily learn to connect with people if we just provide enough triggers to prompt their memories and start conversations again.
Where does your interest in drama and arts come from?
I've always had a huge interest in drama, and in radio. My dad had a day job as a civil servant, but he was also a playwright, and he had his own radio show on RTE National Radio at the weekends. I grew up listening to stories and listening to a very eclectic collection of music. I listened to opera, I listened to pop songs. I listened to classical, I listened to jazz, I listened to everything because it was the music we heard in our house. I was exposed to all sorts of plays and poetry; my parents used to read poetry to each other every night. My mother was shy. She was a great recipient, she loved to listen. My dad loved to talk and tell stories, they were a great combination and were very much in love. I grew up as a storyteller, and also a story listener and this was part of my introduction to the Global Brain Health Institute.
What is the Global Brain Health Institute?
It is a place where researchers, doctors, scientists, economists, policy makers and creative people like me, all come together in the world to learn about Brain Health. GBHI is based in two different centres, UCSF, which is in San Francisco, USA and Trinity College, which is in Dublin, Ireland. The scientists share the research, the doctors share their clinical experiences, and the people like me share their stories. GBHI was established in 2016 and has been funded by the former billionaire Chuck Feeney who famously declared ‘giving while living is a lot more satisfying than giving when you are dead.’ Feeney’s desire to go from being a ‘billionaire to broke’ was realised last year when he was 90. He has funded several initiatives, one of which is the Atlantic Fellows programme community which consists of seven distinctive, values-based, outcome-oriented fellowship programmes located in seven countries on five continents and their connecting hub is The Atlantic Institute.
What have you learned about dementia because of this GBHI experience?
It’s ongoing and I'm learning about all the different types of dementia and I'm learning statistics. Alzheimer's disease represents 60% of all cases of dementia and 15 to 20% of all cases are Lewy Body disease. I learned about primary progressive aphasia, which is when words don't come to you, and you can't make a full sentence anymore. I learned about multi-system atrophy, which is a little bit like Lewy Body disease, but has even more symptoms of movement dysfunction, difficulties talking and bladder and bowel dysfunction. I learned about vascular dementia, which is linked very much with vascular risk factors such as hypertension, diabetes, obesity, and other stroke risks.
I have never heard about Lewy Body disease.
Yeah, there you go. It's been referred to as “the most common disease you've never heard of.” It is the second most common disease in dementia that affects about 15 to 20% of all the cases of dementia in the world. I didn’t know about it either. It is the disease that comedian Robin Williams had and so Robin Williams didn't even know what it was either. Despite his fame and his fortune, he never found out what was wrong with him. It was only diagnosed at his autopsy. He thought he was losing his mind and committed suicide at the age of 63.
Why is this disease so unknown?
It presents with several different forms and can present perhaps twenty years before you actually get a diagnosis. If you are off your sleep, for example, and if you have vivid nightmares, if you have restless legs, or if your eyes ‘start to play tricks’ on you, these can be symptoms of the onset of Lewy body disease. This is a very complex form of dementia, and because the symptoms don't all present in the same way, you can get bounced around the health system. Some people start out in a sleep clinic, saying I can’t sleep, my sleep is not good, and I have horrific nightmares. People with Lewy bodies will report that they had a very disturbed sleep, while their bed partner will report that they were thrashing about, punching the air and kicking in their sleep. Some people have arrived in Accident and Emergency (A&E) with broken bones from injuries jumping out of bed to escape an attacker. The difference with a normal pattern of sleep is that when we're deep in our sleep all what we dream about - windsurfing, scoring goals - happens in our brain and not in our body. Whereas, if you've got Lewy body disease, you do it in your body. You punch, you kick, you have a restless leg. These are all markers that indicate that you might have Lewy Body disease. Of course, there may be other reasons for this type of sleep disturbance.
Another thing that should make an alarm bell ring is if you have severe constipation. I don't just mean constipation as in a day or two, but like a week or two, you know, this is a real early indicator that something else is going on in your brain. But the thing is that Lewy body disease affects mostly men - in their 50s, 60s and 70s, so for young men, it's two men to one woman. And that’s a problem in itself, because, you know, men don’t talk. They don't talk about stuff like constipation or urinary incontinence. Why would they, or why is a man going to say I had a really bad sleep last night? Men don’t talk about stuff like that and that is how it goes on undetected and undiagnosed, because men don't talk, they don’t listen to the early indicators.
What are the other indicators?
Restless legs, constipation, and REM sleep disorder, urinary incontinence, anxiety, depression, hallucinations, and visions. And, of course, people develop cognitive impairment, which eventually develops into dementia. Seeing things that aren't there and oftentimes, it's through a window. So, if you are somebody who has Lewy Body disease, and you're in your kitchen, and you're looking at your back window, and you see rabbits jumping around, or if you see cats that aren't there and birds that aren't there, and people that aren't there, and children or babies, that could be another indicator. It's all small things, but are you going to admit that to somebody? No. Because after 15 minutes, it's gone. Then you’re ‘Whoa, my eyes are playing tricks on me!’ Yeah, so there's a lot of that going on because of Lewy bodies, it’s a very complex disease.
Why does it happen?
As far as we know, it’s all because of a little protein, alpha synuclein protein that clumps and misfolds. Why? Nobody knows. Researchers are working on that. We all have proteins in our brain and at night there's a chemical that is released. It’s been described as a washing machine that washes away proteins that are building up affecting the neural pathways. If you're somebody with Lewy body disease, your cognition starts to get impaired. Now, it doesn't mean that your memory goes, memory goes much later. In Alzheimer's disease memory is one of the first things that starts to go, but in Lewy body memory problems may develop later.
Before this digression, we were talking about your involvement with Global Brain Health Institute. Can you tell us more?
In the first half of the Fellowship Program, we learned from world experts about dementia and other neurodegenerative diseases, with the focus always on Brain Health and how to stay healthy in our bodies and our brains. We learned from case studies about symptoms and how they can be managed, and we learned about the 12 risk factors for dementia. These risk factors were published in the Lancet last year and while they may seem obvious for good general health, it was very interesting to learn that while there may be a genetic link to some forms of dementia there are lots of things we can do to improve our brain health. For example, getting a hearing test is a very simple way to protect your brain health as there is a huge link between hearing loss in mid-life and dementia in later life. Other factors include eating a healthy diet. Obesity is a risk factor, as is smoking and drinking too much alcohol – these seem obvious for general health, but I found it very interesting to learn that these were also risks for getting dementia in later life. High blood pressure and high cholesterol are other things to monitor to help prevent dementia. I also learned that for instance, while there's no cure for Lewy Body disease, there are treatments that can relieve some of the symptoms like constipation, urinary incontinence, hallucinations, and some of the REM sleep disorders. Of all the diseases that I learned about, I thought the strangest is Lewy Body disease, with the visions, the hallucinations, the nightmares.
In the second half of the Fellowship, we worked on a pilot project and that’s how the monthly online informal “Tea-Time with Lewy” was born. My Professor Iracema Leroi and I put together a team of people who are now working on Lewy Body Dementia, as Lewy Body Ireland - a support network for the estimated 10,000 people in Ireland who have been diagnosed with Lewy Body disease - we've connected with Lewy Body Society in the UK, with Lewy Body Dementia in the US and other groups around the world. Tea-Time with Lewy is an informal chat where people who've just been newly diagnosed can join us on Zoom and have just a really nice, easy chat about what it's like to live with Lewy Body disease. People talk quite freely about their hallucinations, and about the lack of sleep. They talk about things like 'I've lost my sense of smell,' ‘I've lost my sense of taste' and other symptoms of the disease that can happen when these Lewy Bodies settle in the nasal passages. We’re always joined by at least one clinician and at least one researcher who are experts in LBD and can answer any questions that arise. I look forward to this chat every month and we are joined by people as far away as Australia, USA and Europe so we have had to move the start times to accommodate different time zones!
It is fascinating how all these elements of your personal stories are getting together…
I suppose the experience of my early years is coming in handy with dementia. I listen to people who have dementia, I tell their stories, and I invite them to tell their own stories. The result is a very enjoyable and engaging radio series, which I hope is helping to relieve some of the stigma of living with dementia. On my radio shows, I typically have four guests and we have a conversation about a particular neurodegenerative disease. We always feature an expert who will tell us all about the disease, how it happens, how it develops; a dementia inclusive artist who shares the benefits of non-drug treatments, but central to these radio programmes is the story of the person who has that particular disease and lastly the caregiver, the person who can tell about their lived experience of caring for someone with dementia.
Why do you invite a creative person, too?
Because we need our storytellers. We need singers, musicians, actors and dancers. For example, if you've been diagnosed with Parkinson's Disease, you can go to a dance class, to help improve your mobility. With Parkinson's, one of the symptoms is that you freeze along one side, typically the left side. So, if you learn how to dance to the music, learn to support a partner, and be supported by a partner, and have fun dressing up for the dance, keeping time to the music and having a laugh, the outcome - they did studies on this subject in Germany - is better than with traditional exercise. The main message is that we must give hope after a diagnosis. That’s the goal – to offer hope!
We rarely look at things that way…
There’s always something that you're good at. Take author Kevin Quaid for example, he was diagnosed with Lewy Body Dementia in Ireland. When he was in school, he never wrote an essay. He never wrote anything. And now he's writing books. He writes for two papers every week. He's writing poetry. His second book, I am KEVIN! not Lewy, has just been published. He has discovered a new talent and this new talent is the thing that keeps him going despite his physical disease getting worse, the sleep getting worse, everything getting worse, his talent has become his lifeline.
In a similar way, Anne Adams was a Canadian scientist who was diagnosed with primary progressive aphasia, which is a type of dementia where you lose your speech over time. Being a scientist, she knew what was going to happen to her and she took up a paintbrush, and she began to paint. She could paint from memory with her photographic memory, but she could also paint music, which sounds strange, but she created this amazing piece of artwork that represented the repetitive keystrokes in Ravel’s Bolero. The interesting thing about Anne Adams case is that because she was a scientist, her colleagues were able to photograph her brain with an MRI scan. What was happening over time was even though part of her brain was shrinking because of her dementia condition, another part of the brain was firing. She was creating new neurons because of the artistic work she was doing which proves that when you become artistic, whether it's actual art, or theatre, or drama, or poetry, or music, or in Kevin's case, writing a book, or poetry, you are firing up new neurons in the back of your brain and you are keeping yourself alive and well and healthier for longer. A great play called ‘UnRavelled’ was created by Jake Broder about Anne Adams and it is fascinating to watch.
In Lewy Body Ireland, I want to ensure that people in the arts are included in the conversation, not just the doctors, not just the researchers, not just the people who have the diseases, not just the carers. You also must have this artistic element because the creative arts agents are the people who literally give you hope after a diagnosis.
What are the obstacles to applying this philosophy to our life?
The first obstacle is fear. Fear of the unknown, fear of the word dementia, because if you have a parent with it, you are afraid you are going to get it. You worry that this might be genetic, and you will be a financial burden on your kids. The second obstacle is lack of understanding. On the day you get a dementia diagnosis, it doesn’t have to mean that you are now totally incapable of making your own decisions. Oftentimes people are told to ‘get their affairs in order’ which can cause enormous distress. People do not realise that it’s not a blow to the head, you didn’t fall off a horse. Dementia can be a long process, it can be a progressive slow-moving disease, but once you get the diagnosis suddenly, family members start panicking. ‘You can’t be alone in the kitchen; you can’t turn on the cooker by yourself.’ ‘Of course, I can turn on the cooker, I’ve been turning on that cooker for sixty years,’ and then that person is considered very disagreeable. They are just trying to process the diagnosis too. I think more training is needed to make sure that people who have been given a dementia diagnosis have also been offered some level of hope.
There are 50 million people living with dementia in the world now. By 2050, there will be 152 million, that figure is set to multiply by three in less than thirty years. How are we going to cope with this disease when it is going to be three times more if we can’t cope with it now? We need to get creative. We need to find ways to keep people at home, successfully, supported, independently for longer. How do we do that? We find out what they were good at once upon a time and we creatively find a way for them to continue being a useful member of the family, of society. That’s why it’s important to include the person living with dementia at all stages of dementia care and dementia planning. It’s like marketing: we need to ask people what they need, and we need to design paths for inclusion. I’ve met people in care homes who can’t talk, but can still play the piano, they still have a part to play. We need to find a way to let them be active players in society.
Talking with you, I realize that the idea of inclusivity doesn’t simply mean to include people, it’s embracing a new way of looking at things. Do you agree?
We can handle these situations as problems as we try to frame them to manage them, but we can also learn from these situations. In the long term, you see all these emerging diseases, there are over 400 types of dementia, and researchers are working tirelessly to find a cure. But the first place to start in my opinion is to launch a global conversation about dementia by asking two simple questions – What Type? What Stage? The priority would be to get a clear diagnosis of what type of dementia the person is living with so that symptoms can be easier to manage. Dementia is a very complex disease, there’s no doubt about that, but more training needs to be done globally to educate the general public about the different types of dementia, so we are all more informed if and when the time comes for us to use that knowledge.
And finally, we need to bring joy back into our lives. When we find joy in whatever it is - dancing, music, singing, reading poetry, writing poetry, standing in the sunshine, or meeting a friend for coffee and having a good laugh… in all these moments, we’re releasing chemicals into our brain, we're raising serotonin and dopamine which makes us feel good. We need to return to what makes us feel good. It’s been a very challenging few years for everyone, but especially for people living with dementia. If there is anything we can do to help ourselves, the starting point is to remember all the things that made us feel good in the past and find ways to bring this joy back into our lives.
