Monica Gram Olsen takes a position at the front of the stage. The sequined scarf she wears around her neck sparkles. She has the Broadcasting Orchestra (KORK) behind her. Conductor Kim in front of him – and in the hall his children Mia and Haakon. Monica is a soloist in Demenskoret. She is only 50 years old. Lost track It was the little things that my daughter noticed first. For example, how mother Monica got nervous when she was going out for a drive. – She kind of didn’t understand the whole concept of “road” anymore. Where she should drive, how she should lie in roundabouts and the like. And she noticed it in what most mothers are so good at. – The overview disappeared in a way quite a lot. She lost track of things in everyday life. Who in the family was going here and there. The colleagues at the workplace also noticed that something was not right with Monica Gram Olsen. – They thought I wasn’t quite where I used to be. I thought that was very strange to hear, because I felt that I was exactly as I had always been. After just over a year of tests and trials, the explanation came. A diagnosis most people associate with much older people. Alzheimer’s. Song-happy Mia is barely out of her teens. We meet her in Oslo, where she is studying for a bachelor’s degree in musical theatre. Alongside her studies, she works as a singing and music teacher. Music and singing have always been close to Mia. Now the music has also taken on a new role. – I love singing. Music is what has always been interesting to me, and especially the musical song. Behind a piano at the University College in Kristiania, she sings a few stanzas from the musical film The Wizard of Oz. – It is a warm message that over the rainbow you and I can thrive. Everyone else can fly high, so why shouldn’t we fly high? I think it describes hope in a good way. Music and singing have been an important part of Mia’s life. Now the song means even more – not only to her, but also to mum Monica. – I never thought I would fit into that picture, but I actually do, says Monica with a smile. The dementia choir will give both her and the children very special experiences, moments and memories – and culminate in a big performance. Sing and be happy. Monica with conductor Kim and the Dementia Choir. Photo: NORDISK BANIJAY/news Who will take care of whom? It is early January and freezing outside. In an apartment in a block by the Drammen river, Mia and Monica hang a timetable on the wall. The apartment is sparsely furnished. Sofa has been ordered, but has not arrived yet. On the kitchen counter is an almanac and a dose of medicine that may be able to alleviate the Alzheimer’s disease. For Mia and little brother Haakon, it has been a tough year in several ways. Not only was the mother diagnosed, but in the summer of 2023 the parents also went their separate ways. Mamma Monica has moved into a new apartment in her hometown. Now Mia will live with her mother in the new apartment for a few months, and help her get new routines in place. For an Alzheimer’s patient, the pieces don’t always fall into place so easily. Simple everyday things can become difficult. Like turning on the TV, finding the way from the basement of the block, or finding the right door to the apartment. It can strain the patience of a young girl. – It’s something I’m working on, but sometimes it’s just “… aaah! Now you have to … But listen! Understand this!”. And then I realize I have to take two breaths, and then we do it one more time. I understand that she can’t do anything about it. If she knew how to do it, she would have done it. Mother and daughter have a close relationship. Mother looks after daughter. Now it may be the daughter’s turn to look after her mother, long before it should have been. Mia and Monica – a song-loving duo. The balance in a mother/daughter relationship can be upset by such things, but Monica still feels she is a caregiver in her children’s lives. – I think that there really isn’t that much of a difference now. But, yes, it could be. I also don’t think she feels she has to be my carer and not the other way around. I don’t feel like we’ve switched roles yet, but obviously the kids are thinking about it. Are you thinking about it, Mia? – The worst fear is perhaps to be a bit alone in it, that you feel that you have to stand very close and watch out. That you have to take care of someone when you need it yourself, but at the same time you do it with joy. I always, always want to take care of my mother. But it probably hurts extra to know that I have to do it. Monica has both parents and a large network of friends. Her best friend Hilde accompanies her to choir practice almost every week. Mia is happy about that. – I’m lucky then, to have grandma and Hilde. I can lean on them when I can’t bear it. Fatal diagnosis More than 100,000 people in Norway have a dementia disease. When it occurs before the age of 65, it is considered early dementia. – About 2,000 live with one form of dementia aged up to and including 64 in Norway, we believe. But the dark figures are large. That’s what Marte Kvello-Alme says. She works at the hospital in Levanger as a doctor specializing in neurology and psychiatry and has researched young dementia. Researchers know little about why some people are affected at a relatively young age. – We know a lot about what happens in the brain, but we still don’t know the cause. It is probably multifactorial. Very little research has been done on risk factors for younger people, but there is probably a greater genetic component in those who develop dementia at a young age. This is dementia Dementia is a collective term for several brain diseases that lead to cognitive impairment, loss of physical and mental function. The most common types are: Alzheimer’s disease Vascular dementia Frontal lobe dementia Dementia with Levy bodies What they have in common is that there is no medicine that can cure them, that they worsen and are fatal. The biggest risk factor for getting dementia is old age, but there are also young people with this disease. Today there are approximately 100,000 people with dementia in Norway, but researchers believe the number could double by 2050. The causes of dementia are unknown, but there is a lot of research into dementia all over the world. Sources: Helsenorge.no / Aldringoghelse.no / demenskartet.no Whatever the reason, she believes that in several ways it is worse to receive such a diagnosis at a young age. – They have completely different demands in their lives. They experience not functioning in their job. They face problems in relationships and as parents. And they are more often aware of their own situation, says Kvello-Alme. – If you get Alzheimer’s when you are in your 50s and 60s and otherwise healthy, then you have to calculate and live out the entire course. Then you get all the phases, including the last phase. Alzheimer’s disease is a 100 percent fatal disease. At the same time, she emphasizes that it is very individual how long you can live with it. Although there are several studies that show a shorter lifespan, there are also studies that show otherwise. – I have had patients who are included in my material who had an early-onset dementia, and whom I have met again later as 80-year-olds living at home. Why young people get Alzheimer’s is a mystery, says PhD and doctor specializing in neurology and psychiatry, Marte Kvello-Alme. Collecting moments Mia is also aware of how serious her mother’s diagnosis is. – We don’t know how long things will take, as it were. But of course, you fear that it could be three years, it could be five years, it could be thirty years. In a way, I don’t feel like reflecting on it too much either. It’s not good for me, and it’s not good for her. Mia rather takes each day as it comes. For her, it’s the moments that matter. Big and small. The ones you don’t always notice. – Simply cooking dinner together, or going for a walk. It will be such a memory bank that I understand the value of now. Tips when you are a young relative Attend courses, gatherings and / or talks for relatives. Be open about your mother’s or father’s illness to those around you, such as family and friends. Take care of yourself and your interests. Talk to others, don’t keep things to yourself. It is allowed to be happy, sad and angry. Ask the health nurse, a local dementia association or others if there are other young relatives nearby that you can talk to. Be active and search for information yourself. No one knows what questions you have and what information you need. REMEMBER! No question is too stupid. You are the expert on your mother or father’s illness, and how this is experienced for you. No one else knows what it’s like, no one is the same. Source: https://tidtilung.no/ Proud of mamma The large studio at news Marienlyst is filled with decorated guests. It’s time for the highlight of the year in season 2 of Demenskoret. They will hold a concert with the Kringkastingsorkestret (KORK). Monica is a soloist and has had her own rehearsals with the choir’s conductor Kim and music therapist Jelena. It has done wonders for concert nerves. – I’m not that nervous. Perhaps that is Kim’s merit. He has managed to make the nerves disappear. Now it’s just fun. Friends and family in place before the big concert. Photo: JULIA MARIE NAGLESTAD / NORDISK BANIJAY/news Among the audience are also Mia, little brother Haakon, friends and family. Months of practice must be put into practice. Mia is aware that the music and the people she meets through the choir have meant a lot to her mother over the past year. – I just know that it makes her very happy. It is not a miracle that she can sing, because she has always been good at singing. The most important thing for her is togetherness, and that she can be with Kim and Jelena. Conductor Kim Wigaard Johansen means a lot to Monica. Photo: NORDISK BANIJAY/news The concert is underway. Monica is a star. The song on which she is the soloist is the same one that Mia associates with hope – “Over the Rainbow”. It will be one of the great moments worth collecting for Mia. And perhaps the concert was a change of roles in another way as well. – I’m so used to mum always coming to me and saying I’ve had a great performance. Now so many people came to her and said “you’re so good!” “You are so good!”. Will you be proud? – Are you crazy! I was at the big concert. I was allowed to see her shine with KORK. Then you become so proud. It’s absolutely insane.
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Mia’s mother Monica Gram Olsen sings in the Dementia Choir as a 50-year-old – Long reading from news Trøndelag
