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Raoul Gröngvist and Milja Ahola (Finland)

Personal experiences of living with dementia

EWGPWD member Raoul Gröngvist and his wife and caregiver Milja Ahola share their experiences with movement recall and musical therapy

A Finnish museum once commissioned me to create a series of short animated films on the different stages of shoemaking. In order for me to convey something of the process, I first had to understand for myself how the machinery once used to work.

A shoemaking machine stood, mute, in the bowels of the museum. An academic, a retired importer and a master shoemaker had gathered around it, wondering how it might have worked back in the day. The academic knew the theory behind it. The importer was familiar with the technical specification, in other words, with what the machine used to do. The shoemaker had operated the machine for decades. He grabbed an unfinished shoe, turned it this way and that in his hand until it felt just right and then approached the machine. With his other hand, he felt for a lever, with his foot he searched for a pedal. If the hand could not find what it was looking for, it was clear something was missing. The master shoemaker could not explain in words how the machine worked. And yet he had the knowledge that led his hand to the right lever, that directed his foot to the correct pedal and that told him which part was missing. It was movement recall, that silent knowledge amassed over the years, that was telling him how to finish the shoe.

Two years ago, we attended a rehabilitation course, run by the Finnish social security institution KELA. At an exercise class for patients and their families, we were invited to gather round in a circle. Touch your nose with your left hand and your ear with your right – and then the other way round. The movements help to activate the brain and stimulate your memory. I suspect few of us can be bothered to do exercise if we fail to see the point of it.

Raoul was fascinated by the basketball hoops. We managed to talk one of the younger guys in the group to play with him. I could hardly believe what I was seeing, as Raoul, a former Junior Finnish Basketball Champion, started shooting hoops after a break of more than 30 years.

Immediately, the search was on for someone for Raoul to play with. We found a team, who only played for fun, but had a coach. A coach, as it turned out, who had previous experience of working with disabled players. He immediately welcomed the memory-impaired candidate: “Join us, come and have a go,” he said. After the game, Raoul radiated happiness: “Worth it, even if it was the last time.”

Raoul went on to play with the team until it disbanded. After that, he continued to train one-on-one with his personal assistant. After one particular training session, the master player said, with evident relish: “The boy is starting to get there, he’s learning how to grab the ball properly.”

People with memory impairment want to pursue leisure activities that they are interested in, whether that is something they have always been involved with, or something they have always wanted to try. When you are drawing up a rehabilitation plan, it would be a good idea to ask what the client wants, what they like and what sort of exercise they enjoy.

Raoul has played classical guitar for 50 years. He has used music to express his joys and his sorrows. As his illness has progressed, it has become harder for him to read music and he can no longer commit longer pieces to memory. The fingers work perfectly but the notes just fall apart. And with his sharp ear for a melody, what was once a pleasure and a release has become a source of disappointment. Raoul stopped playing completely a couple of years ago.

We wondered what we could do to help. Formal tuition we rejected outright. Then we heard about musical therapy. In musical therapy you play an instrument and talk about your feelings. Progress has been slow but rewarding. Raoul has his guitar out every day now. Each time, he plays for longer. He perceives the notes differently from before. He now reads them in clusters.

For Raoul, musical therapy is an excellent form of rehabilitation. His brain and hands remain active and playing is once again a source of joy and pleasure. When he plays at the day centre he attends, he is also able to share that joy with others.  Sadly, there is currently no public funding available in Finland to provide tailored rehabilitation for people with memory disorders. Those receiving a disability pension receive no financial support for musical therapy.

Everyone suffering from memory impairment should have the right to rehabilitation that is tailored to them. Rehabilitation must start with the needs of the individual and reflect their life experiences. Rehabilitation must begin when the person is still able in mind and body and keen to put their skills and abilities to use.

This article was originally published in MEMO, the journal of the Finnish Society for Memory Disorders Expertise, and subsequently in issue 19 of our Dementia in Europe magazine in March 2015.

Raoul has played classical guitar for 50 years

Milja Ahola and Raoul Gröngvist

 

 
 

Last Updated: Monday 16 November 2015

 

 
 

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