Music and reading for a better life with dementia

Dementia is one of the greatest public health challenges of our time. We are living longer than before, and we expect the number of people with dementia to double over the next 15-20 years. Medical interventions have limited efficacy and often cause negative side effects. There is therefore a great need for good, non-drug interventions for people with dementia. Measures that can help people with dementia live at home longer are therefore particularly long-awaited

The research project HOMESIDE (Home-based family caregiver-delivered music and reading interventions for people living with dementia: an international randomised controlled trial) has investigated the effect of music and reading programmes for people with dementia who live at home with a partner, family member or other close person who provides them with care.

An international collaboration between five countries

HOMESIDE is an extensive international research project involving five countries: Australia, Germany, Poland, the United Kingdom and Norway. The project is funded through the EU's Joint Programme on Neurodegenerative Diseases (JPND).

In Norway, the Norwegian Academy of Music, represented by the Centre for Research in Music and Health (CREMAH), has led the project. The project has received NOK 6.7 million in network support (coordination and support activity) from the Research Council.

Home-based care with music and reading

In the HOMESIDE study, the participants were divided into three groups, where one group participated in a music program, one group in a reading program, and one group received standard care. First, the researchers mapped out the music preferences of each individual with dementia to ensure that the music was meaningful. Then, through training by music therapists and occupational therapists, the caregivers learned how to use music and reading in everyday life.

The Covid-19 pandemic meant that HOMESIDE had to switch to conducting the study online. Nevertheless, the researchers in the project managed to complete the data collection. The participants kept a diary to document their experiences and the researchers evaluated the effects in areas such as behavioral symptoms and quality of life.

"HOMESIDE offered a wide range of music activities, from active participation such as singing and playing, to more passive activities such as listening and movement to music. The most important thing was that the activities were adapted to the individual person with dementia and their caregiver," says Karette Stensæth, project manager for HOMESIDE Norway. She is also a professor and director of CREMAH at the Norwegian Academy of Music.

Positive impact and value for people with dementia and their relatives

The main findings from the HOMESIDE study were published in eClinicalMedicine (link opens in new window) which is part of the renowned The Lancet series (Discovery Science). 

Several sub-group analyses have been done and published in HOMESIDE, while other analyses are still ongoing. Although the primary hypothesis that the music program would have a significant effect on the behavioral and psychological symptoms of dementia was not confirmed, the study shows a number of positive results.

"No worsening of symptoms was observed in the participants in the music group, which in itself is a good result when we talk about dementia. The caregivers reported an immediate positive effect in the person with dementia when actively participating in music activities, especially singing. This result is also valuable for our group, which often struggles with apathy and depression," says Stensæth.

An investment in the dementia care of the future

The HOMESIDE project has provided valuable knowledge about how music and reading can be used to improve the quality of life for people living at home with dementia and their relatives.

"The study suggests that music and other meaningful activities can be used more. We call for more research on whether this can contribute to postponing people with dementia having to move to institutions and whether it can reduce the use of medication for people with dementia. In that case, we are talking about important health economic gains," says Stensæth.

Results from the HOMESIDE study  

• There was no improvement in psychological symptoms of dementia, such as anxiety, apathy and depression, when people living with dementia and their family carers used music or reading activities at home.
• However, participants reported several immediate benefits when they used music and reading activities together.
• Making music active, for example by singing, playing instruments or moving to music, increased the likelihood of more positive benefits than by just listening to music.
• The use of the music and reading activities gave the caregivers more resilience.
• The use of music activities improved the participants' relationship quality (trust and commitment among the couples and what gives and stimulates bonding between them).
• The music and reading activities were safe to carry out and no negative side effects were reported.
• Next of kin were given a practical tool to deal with some of the challenges of living with a person with dementia at home.
• The HOMESIDE project generated new knowledge about non-drug interventions in dementia care. This knowledge can be used to develop better services and offers for people with dementia and their relatives.

From research to practice

HOMESIDE has also led to several bonus effects. The researchers in HOMESIDE, who also participated in NRK's popular TV series Demenskoret, have been active in the media and created new engagement and increased awareness of music and dementia. The new project collaboration they have with the City of Oslo on the implementation and effect of dementia choir participation for people with dementia and their relatives is a good example of further development of services.

HOMESIDE's partner, the University of Melbourne, has also now received a lot of funding for the development and piloting of the e-health app MATCH. The app is based on the results from HOMESIDE and will help people with dementia and their caregivers to use music to regulate mood and behavior at home.

"This shows how research can contribute to developing creative solutions to major and important societal challenges," Stensæth concludes.