One million people in the UK are expected to live with dementia by 2025. Although there is no cure, there is growing evidence that music can help ease symptoms such as depression and restlessness, writes Kelly Oakes – and also bring these people and their families. much needed moments of joy.
When he was only 30 years old, Daniel received a diagnosis that no one expected.
The former drummer and engineer had to give up work after developing problems with his speech, memory and motor skills.
The culprit was a rare form of Alzheimer's disease, a condition most common in people over 65, but it can also affect much younger people.
"Certain things happen every day, I forget what I did and also what I have to do," says Daniel. "It's a bit overwhelming. It's usually very difficult being in social settings."
It was only when Daniel was diagnosed that he realized that his father, who died at age 36, should have the same condition.
The news came shortly after the first birthdays of her children, the twins Lola and Jasper.
There's a 50:50 chance, say doctors, that the defective gene Daniel inherited has been passed on to them as well.
Now 31, Daniel's great hope is to live long enough to see his twins begin school.
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Watch the first part of Our Dementia Choir with Vicky McClure on BBC One at 8:00 PM on Thursday, May 2
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"For someone of Dan's age, his life expectancy is about four years from diagnosis. It's very scary to hear this, you feel hopeless," says his partner Jordan. "It's hard to see someone so young, fit and healthy to have all those symptoms."
Daniel joined a choir of people with dementia, organized by actress Vicky McClure in memory of his grandmother who lived with the disease and died in 2015.
As he watched over his nonna, McClure noticed that the music, especially singing along, brought a smile to her face.
"When we sang, we were all on the same page," she says.
The 18-person choir consists of people living in Nottingham and surrounding areas where McClure grew up, all living with dementia in one form or another.
Dementia is a generic term that covers any progressive change in one's thinking abilities. It can manifest itself in different ways, affecting memory, language, emotion, and behavior depending on what it is causing and what parts of the brain are damaged.
Types of dementia
Alzheimer's disease is responsible for 60% of people with dementia primarily affecting people over 65, although 5% of people with Alzheimer's are younger
Vascular Dementia, which occurs when blood vessels in the brain are damaged, reducing blood flow to brain cells, affects 20% of people with dementia
Dementia with Lewy bodies affects 10-15% of people with dementia – Lewy bodies are small round clusters of protein that accumulate inside nerve cells
Frontotemporal dementia, which mainly affects people aged 45-64, accounts for less than 5% of dementia cases – symptoms may include changes in personality, memory loss, confusion, and difficulty with day-to-day tasks
Source: Alzheimer's Research
For most people, dementia progresses slowly, meaning that they live with it for many years.
There is no cure, although doctors can try to avoid further damage and slow the progress of the disease in patients with some types of dementia, vascular dementia for example. In other cases, treatments focus on relieving symptoms and helping patients to live well with the disease.
That's where the music comes in. There is growing evidence that music can help people with dementia lead a happy, fulfilled life after being diagnosed.
To help investigate this idea, Vicky McClure's choir participated in a study conducted by Sebastian Crutch, a professor of neuropsychology at the Dementia Research Center at University College London, about how music and the visual arts affect people with dementia.
Crutch's work does not refer only to what people say they feel during and after these activities, such as singing or attending an exhibition, but also how their bodies react. The choir singers wore a wristband that measures heart rate, temperature, movement and "electrodermal activity" – levels of sweat on the skin.
The results showed that movement and heart rate decreased during choir trials. People living with dementia can often feel restless and restless, so these scores probably indicate that they are feeling more relaxed as they sing.
That was also the message of the survey asking the singers how they felt – which showed a positive effect on their well-being. Both results supported each other, Crutch notes.
"I think that's a very important sign for us, because people generally looked at these things in isolation," he says. Previous studies tend to be based only on self-reported effects, or on external measures, but not on both.
Most of the evidence on music and dementia is related to music therapy courses.
A research review published in 2018 analyzing music therapy trials in nursing homes or hospitals found that sessions improved symptoms of depression and behavioral problems in people with dementia but said more research is needed to determine duration and other effects .
Other reviews have found evidence that music therapy may help reduce agitation and that music therapy is effective in reducing the behavioral and psychological symptoms of dementia.
And music seems to have more benefits than activities like painting, walking or visiting friends, Crutch says.
The right music can transport you instantly back in time, triggering strong emotions, even if you have not heard it for years. This ability that music has to reach within our brains and extract old memories that we thought were gone long ago also applies to people with dementia, not just those without it.
Rae, a former music teacher, gave up playing the piano after being diagnosed with Alzheimer's. But during the first rehearsal of the choir, everything comes back as she sits down to play for the first time in 10 years.
"I do not think I would remember how to play," she says.
A little later, she finds herself following the members of the chorus singing Ben E King's Stand By Me. "I was saying," I hope my fingers know what they're doing, because I do not know. "And they did, they knew what to do, and I'm thinking," Ya-hay ! & # 39;
Similarly, relatives of someone with Alzheimer's may be surprised to find they can remember every word they knew when they were 17, Crutch says, though they have struggled to remember what they did yesterday.
This is because dementia causes particular problems with short-term memory – making someone forget to eat breakfast or bathe, for example – while long-term memories may remain intact, at least in the early stages of illness .
Part of his long-term memory, called procedural memory, stores information on how to do everyday things such as brushing his teeth or, in the case of a former musician like Daniel or Rae, how to play his instrument. When brain damage hinders access to those memories, the music seems to be able to activate a switch to bring at least some of them back.
"It's a kind of physical emotional and physiological memory that music is very capable of triggering," says Helen Odell-Miller, a professor of music therapy at Anglia Ruskin University. "It can trigger the [memory of] rhythmic patterns, for example, that the person knows. "
In addition, listening to music involves several different parts of our brain, including those involved in language and emotion. So even if a part related to the music is damaged, other parts may still work well.
"Music touches our emotional circuits, which are often damaged much, much later, in diseases such as Alzheimer's disease than circuits that support memory for day-to-day activities," Crutch says. .
Scientists still do not fully understand how music helps people with dementia.
Daniel is participating in a five-year study at Anglia Ruskin University in Cambridge, investigating what actually happens in someone's brain during a session with a music therapist.
Jörg Fachner, a professor of music, health and brain at the university, says music can be especially important as it provides a communication channel that does not rely on speech or language skills that may be harmed by dementia.
But there is also something special going on inside Daniel's brain as he plays time with the therapist.
Both the participant and the therapist wear caps that measure their brain activity as they sing together and play instruments. At times, when people play music together, their brains seem to synchronize, showing the same patterns of brain waves.
"How that works, when you're doing music therapy with a patient, that's something we're still trying to figure out," says Fachner.
And Daniel illustrates the effect mentioned by Helen Odell-Miller – as the session progresses, his ability to play in time improves.
In recent years, many music-based initiatives have emerged for people with dementia.
The Alzheimer Society runs Singing for the Brain, which involves meeting with other people to do vocal warm-up and sing familiar songs, while the Playlist for Life charity advocates prescribing personal playlists.
A national campaign called Music for Dementia 2020 hopes to provide some form of music for everyone with dementia by 2020.
But while these activities are now common, it is clear that more research is needed to understand how to help people get the most out of it.
Helen Odell-Miller is investigating the impact of caring-driven musical activities that people with dementia and their loved ones can do at home.
She has just started working on a study involving hundreds of couples from five different countries – the UK, Australia, Poland, Germany and Norway – where a person has dementia and still lives at home.
Each couple will spend half an hour a day making music, supported by music therapists. "It will be about incorporating this into daily life," she says.
The musical intervention will be compared to reading or listening to stories, and Odell-Miller will analyze not only how this affects the well-being of the person with dementia, but also how it affects their caregiver.
Music can be especially potent for those with severe dementia because the present moment may be all they have, she points out.
"For this person, the now is the most important moment because they do not have the ability to remember what happened the minute before."
One thing that music can not do for people with dementia is to reverse the damage done to the brain or change someone's prognosis.
"I would definitely say singing on a choir is not going to lengthen someone's life," says Sebastian Crutch. "We do not expect it to have any impact on the rates at which the proteins that characterize these different diseases are forming in the brain or slow the death of brain cells."
Where to Get Help
Caregivers of the United Kingdom
But while the benefits of long-term music are still uncertain, it is clear that music can provide shared and instant experiences, from which both people with dementia and their loved ones benefit.
An enthusiastic member of Vicky McClure's choir, the 67-year-old former carpentry professor Chris, realized for the first time that something was not right when he got lost on the way to work.
"I turned left in a village where I had never turned left and found myself in the middle of that field that I did not recognize," he says.
He has frontotemporal dementia, which makes him uninhibited and unpredictable. Sometimes he says inappropriate things.
"He's still here in the body, but he's not the person I married," says his wife, Jane. "I just find the whole thing so, so sad.There will be moments that we value a lot, where we have flashes of old Chris."
A precious moment came as he was practicing at home between rehearsals. He began to cry with the thrill of the song he was singing and then Jane as well.
"That was very strange, the two of us standing, both in tears," says Chris.
"It was sad because we were both sad – but we were sad for the same reason … we both could say that we will miss each other," adds Jane.
Because Chris's frontotemporal dementia affects his emotions, moments of connection like this matter to both.
Through participation in a shared creative experience, family members or professional caregivers may come to see people with dementia in a different light, Crutch says. "In that sense, I think there may be some very good long-term social benefits to attend."
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