Music as public health medicine in future dementia care

Based on figures from WHO, there are probably between 80 000 and 100 000 Norwegians living with dementia today. The Norwegian Directorate of Health’s national guidelines on dementia establish that providing services for one person with dementia costs Norwegian society an average of NOK 362 800 a year. Over 80 per cent of those who are given a long-term place in a nursing home have a diagnosis of dementia.

The percentage of the population with dementia increases heavily with age. When the members of the large baby-boom generation reach the age of 80, the so-called age boom will hit Norway. The Norwegian Institute of Public Health estimates that the number of people with dementia will double by 2050. How can the national public health service deal with the coming challenges?

“Several studies reveal that music therapy has a positive effect on life quality and health for people with dementia. We now want to gather data from a large, randomised controlled study with a broad geographical and cultural scope to evaluate the effect of music therapy on people living at home with dementia and their families,” says Karette Stensæth.

Stensæth is a professor at the Norwegian Academy of Music, and is the head of the Norwegian branch of the large, EU-financed Homeside project. Researchers from five countries are participating: Australia, the United Kingdom, Germany, Poland and Norway. Together they aim at gathering a thousand participants, in the form of “dyads”, or two people who are closely related and are living at home. One of them must have symptoms of dementia.

“No prior knowledge or skills in music or reading are necessary to take part,” Stensæth declares.

The participants will be divided into three groups. One group will be part of a music programme, and this group will be compared with a group that is involved in a reading programme and a control group receiving standard care, without taking part in any special programme. The participants will be given training and guidance by qualified occupational therapists and music therapists, all of whom have experience with dementia care.

According to researchers from the Academy, people with dementia and their families have a need for help and support for activities they can do together at home. Many of them are searching for activities that can make their lives more enjoyable and meaningful.

“The need for qualitatively good home activities will increase in the future. Homeside aims at developing music as a means of promoting public health that people can use within the four walls of their own homes when they are confronted with dementia in their family,” Stensæth says

Few things can compare with music

Surveys taken before, during and after the participants have completed their respective programmes will evaluate the effects of the project. Everything from socioeconomic savings to the effect on the quality of relationships will be analysed.

Dementia is often called the “family disease”, and it can impose a heavy burden on those who must care for their loved one at home. Karette Stensæth points out that couples who have lived their entire lives together often experience a diagnosis of dementia as a severe trauma.

“We hear people say that they yearn for the feeling of being together as a couple like they were before the diagnosis. Music can help people find their way back to each other. Reading can be used in the same way,” the researcher explains.

Stensæth says that the main premise of Homeside is based on the effect of the activity on the behaviour and psychological symptoms displayed by those with dementia.

“We believe that the music programme will have the best effect among the measures we will be implementing. Few things can compare with music when it comes to arousing emotions and creating a focus on the here and now, which can be a decisive factor. People with dementia can become apathetic, passive and depressed, and many of them struggle with confusion and delusions,” she says.

According to Stensæth, past research shows that music therapy counteracts depression and increases the power of resistance.

“This can play a major role in helping a person to feel good despite all the difficulties, and at the same time to cope better with their illness,” she continues.

Participants will follow a programme that is often called indirect therapy. Karette Stensæth emphasises that it is the couples themselves who will conduct the exercises.

“Occupational and music therapists collaborate with the couples on developing a tool that the participants can put to use – a tool that is built on their own preferences,” she says.

Within the music programme it can be as simple as finding songs that the participants have enjoyed listening to.

“If the couple liked to dance together before, or they played an instrument or one of them sang in a choir, the music therapist can base the development of the music tool on that,” Stensæth explains.

As part of the reading programme, participants can read aloud from a book or a newspaper, listen to an audiobook or look at photo albums.

“Everything is possible. What is important is to design the tool in a beneficial way that feels natural for each couple. The tool must be easy to use and function well in everyday life,” she says.

Karette Stensæth is the head of the Norwegian part of the Homeside project. Kristi Stedje is a research fellow on the project, and Kjersti Johansen is a post-doctoral fellow.

The pandemic has had significant consequences, also for Homeside. Karette Stensæth points out that the difficulties were so complex with regard to the practical implementation of the project that it was nearly called off. After a great deal of international discussion the researchers agreed that Homeside should continue to operate. The goal was important, as the professor at the Academy says – perhaps more important than ever.

“Because of the threat from COVID-19 these people are becoming even more isolated than they already were from their dementia. Several daytime activities were discontinued,” Stensæth says.

Homeside had to revise its research design and now offers net-based training and guidance.

“This is functioning surprisingly well”, Stensæth remarks.

Researchers have the impression that the fourteen couples who are already involved with the project in Norway can feel the presence of the therapists, although the interaction is taking place on a screen.

“Luckily, this generation knows how to use the Internet, and most of them use smartphones and tablets regularly,” she says.

The Homeside researcher realises that the coronavirus crisis also has its advantages with regard to the project.

“Now we have the opportunity to recruit participants from the entire country, and don’t have to limit our activities to where the therapists are geographically. The electronic version will also have beneficial consequences for the development of indirect types of music therapy and for the future implementation of home-based online services,” says Stensæth.

The goal is for Homeside participants to set aside anything from 5 to thirty minutes, five days a week, for reading or listening to music. If they miss a day now and then it does not matter, according to Karette Stensæth. It is an advantage if the participants can integrate the activities as a routine.

“Past research has shown that music therapy can have an immediately beneficial effect on the quality of life. This effect remains for a little while. Then you have to top it up. With good routines the effect will be maintained. At Homeside we are assessing whether our measures can help to delay the development of the dementia, and maybe even stop its development to a certain extent for some people”, she says.

At a purely neurological level, according to Stensæth, there are few things that engage the brain as comprehensively as music.

“We believe that this can be an asset for all of us in the future. The value of human interaction and togetherness through music is good medicine. And best of all: this medicine has only beneficial side effects.”