The Homeside study findings
Key findings
Dementia is an umbrella term for diseases that lead to a decline in cognitive abilities such as memory and other thinking skills, however dementia also affects behaviour, feelings, and relationships. People living with dementia sometimes experience psychological symptoms like anxiety, apathy, depression, or distress. In the HOMESIDE study, we wanted to find out whether family caregivers could use music and reading activities with the person with dementia they care for to help alleviate these psychological symptoms. We were inspired by the success of professional therapists using music therapy in nursing homes and we wanted to know if similar benefits could be achieved at home by family caregivers. After carrying out the study, we have found that:
There was no improvement in ongoing psychological symptoms of dementia, such as anxiety, apathy, depression, or distress, when people living with dementia and their family caregivers used music or reading activities at home.
However, participants reported immediate in-the-moment benefits when using music and reading activities together.
Active music activities, such as singing, playing instruments, or moving to music, were more likely to have positive benefits than listening alone.
Using the music and reading activities improved caregivers’ resilience and using music activities improved participants’ relationship quality.
The music and reading activities were safe and no bad side effects were reported.
Detailed summary
Our research was conducted across the UK, Australia, Norway, Poland and Germany between Autumn 2019 and Summer 2022. We successfully recruited 432 people with dementia and their family caregivers into the study. To find out the benefits of the music and reading activities, participants were randomly assigned to one of three programmes: music, reading, or usual care (with no additional music or reading). Participants in the music and reading programmes received one-on-one professional support online to use either music or reading activities together, and were asked to engage in these activities at home regularly for three months.
We used a questionnaire called the Neuropsychiatric Inventory-Questionnaire, which measures psychological symptoms that can be experienced when living with dementia. Participants completed this questionnaire before starting the study, after 3 months, and again after 6 months. Using this information, we were able to closely examine any changes in participants’ symptoms.
We noticed a number of immediate improvements and benefits for certain groups, but overall there was no statistically significant difference in psychological symptoms after three months, between the participants that did the music or reading activities and those that received usual care. After six months, the participants who did reading activities did show some improvement in psychological symptoms; however, this small improvement was not large enough for us to determine if the reading activities could meaningfully reduce symptoms. Overall, there were no bad side effects from doing these activities.
Participants also kept daily diaries about their use of music and reading activities, and from these diaries we saw that there were some positive effects right away and throughout the day when using music activities at home. We also saw this when participants used the reading activities, but to a lesser extent. This suggests that these activities may have more immediate and in-the-moment benefits. Furthermore, we found that active music activities, such as singing, playing instruments, or moving to the music, were more likely to have positive benefits than listening to music alone. This highlights the significance of active involvement in music activities.
We also found that the impact of music activities might depend on the specific type of dementia a person has. We found that participants with severe symptoms or vascular dementia showed a greater decrease in psychological symptoms after using the music activities, but this needs further research to confirm.
The findings also showed that caregivers who were using the music or reading activities experienced improvements in their own resilience and those who used music also felt their relationship quality improved. This suggests that engaging in music or reading activities may have positive effects on caregivers, enhancing their well-being and relationships. However, more research is needed to confirm these findings.
In summary, our study suggests that while caregiver-delivered music and reading activities may not lead to long-term reductions in psychological symptoms of dementia, there are notable short-term benefits, particularly when caregivers actively participate in music activities (for example, singing rather than just listening). Furthermore, individual responses may vary, and people living with dementia and their caregivers can derive personal benefits from using music as a therapeutic tool. Finally, participants in our study received support remotely due to the COVID-19 pandemic, and it will be of future interest to study the potential effect of in-person professional support.
We express our gratitude to the participants from the five countries who kindly dedicated their time and effort to take part in the study. The study would not have been possible without the valuable contributions of both the participants and various organisations that provided funding for the EU-JPND programme across the five countries.
The HOMESIDE study primary findings have been published in eClinicalMedicine, which is part of The Lancet Discovery Science. The journal article is available here: https://www.sciencedirect.com/science/article/pii/S2589537023004017