Who will we tell? Dementia care advocacy and education through song

This research demonstrates how music can help those living with dementia, their family caregivers, and healthcare professionals. Professor Hilary Moss and her team created high-quality, research-based artistic projects that enable people living with dementia to communicate their experience of it, including being treated by clinical teams, and directly educate healthcare professionals about this experience.  

In addition, the team employed arts-based research to illuminate perspectives on the illness that traditional research cannot provide.  Healthcare professionals were assisted in using music, both in person and online, to support and improve the lives of people living with dementia. 

By engaging people living with dementia in the act of music creation, the research directly benefits these individuals, their family carers, students in training, and the public. 

Description of the impact 

This research into music and music therapy, carried out between 2020 and 2023, had multiple benefits for people living with dementia, their family carers, students in training, and the public. Because of this unique research, people living with dementia actively engaged in music creation. This included people living in remote locations, for whom such therapy was previously unavailable. 

As part of her PhD research, Dr Sophie Lee led a singing group for people living with dementia and their carers in Rua Red Arts Centre, Dublin. She published the only Irish (and one of few international) singing group protocols for working with older people in the community. 

The research led to the creation of a telehealth music therapy service for people living with dementia (approximately eight people) and their family carers (approximately 20 carers). These individuals live in remote areas and socially isolated communities and had not been able to access music therapy before. The online music therapy service enabled them to engage remotely, with great success. 

Furthermore, the research spurred the creation of public education programmes. For example, Professor Moss co-ordinated public, live-streamed education events about the help that music can bring at home. These events were aimed at various groups including people living with dementia, musicians, health service staff, and the public. They were attended by more than 300 people. 

The research resulted in the writing of a song by people with dementia and their family carers. In March 2023, supported by professional song writers and Irish World Academy of Music and Dance, UL students, the song was performed publicly. At an international hybrid seminar at UL, it was a collaboration between UL, the Alzheimer’s Society of Ireland, and HRI - UL's Health Research institute. The performance was facilitated by esteemed songwriters Carl Corcoran and Lisa Kelly. A recording of it is now available as an advocacy tool to the Alzheimer’s Society of Ireland. The event also included presentations from the PPI contributors, music therapists, and eminent geriatrician Professor Desmond O’Neill, and was launched by Professor Anne McFarlane, Professor of Primary Healthcare Research at University of Limerick. 

In addition, this research added to the suite of research initiatives led by Professor Moss around music and dementia, including multiple research projects for older people with dementia. For example, it inspired a composer-in-residence project at Tallaght University Hospital in 2012, which led to an original series of compositions that were performed in multiple locations in Ireland and abroad. The original composition is regularly used as a tool for education and advocacy for people living with dementia. For example, it is a teaching tool in undergraduate and Post Doctoral music therapy programmes at UL and Maynooth University. 

Finally, the research led to the creation of several jobs. For example, it led to jobs for musicians and music therapists working with people living with dementia (two musicians, three music therapists). These include music therapy sessional jobs, as part of a ‘Music and Movement’ research programme led by Professor Amanda Clifford (physiotherapy) and Dr Orflaith Ni Bhriain (Dance). The music therapists delivered the musical aspect, based on Dr Lee’s group protocol.   

Evidence of impact

• Source 1: Alzheimer’s Society of Ireland Public and Patient Involvement PPI group – 3 people with dementia and their 3 family carers. Testimonials as written in published journal papers and on the film of the song writing project. 

• Source 2: Carers Mindful Music Group representatives – people who attend weekly therapy groups who can attest to the benefits recorded in our research outputs 

• Source 3: Age related healthcare staff at Tallaght University Hospital – consultant geriatricians who support the project and have witnessed the benefits for their patients. 

• Source 4: Creation of a telehealth music therapy service for people with dementia and their carers. https://www.familycarers.ie/events  

• Source 5: Two public education programmes. Professor Moss co-ordinated public, live streamed, education and awareness events for the public, health service staff, musicians, and people with dementia, about what it’s like to live with dementia and how music can help at home. More than 300 people attended these events. 

• Source 6: Thompson, S. (2023) Community choirs: ‘it has been a revelation to me – a weight off my shoulders’, The Irish Times. Available at: https://www.irishtimes.com/health/your-wellness/2023/09/22/striking-the-right-note-with-community-choirs-and-groups/ 

Research description 

Moss’s team developed guidance for music professionals, offering appropriate music interventions for people with dementia (output 6). They investigated how music interventions can help people living with dementia cope with the illness and caring responsibilities. They created high-quality, research-based artistic projects that illuminated perspectives on the illness inaccessible to traditional research. 

The team worked with a team of music therapists, clinicians, and stakeholders to develop telehealth music therapy interventions. Lisa Kelly formed a team of PPI participants and telehealth music therapy projects, devising an advisory visual map that guides music professionals’ choices of appropriate interventions (output 1), a map necessary for professional music therapists’ assessment of the needs of people with dementia (output 1).  

The team demonstrated that: Music therapy for people living with dementia is successful online and in person; student music therapists and doctors can effectively learn telehealth therapy and music therapy research (output 2); original songs written by family carers and people with dementia can powerfully explain the experience of living with dementia (output 2); pilot groups can lead to ongoing music therapy groups for family carers (output 3). 

We Will Tell Everyone video on YouTube

Research outputs 

1. Kelly, L., Clements-Cortés, A., Ahessy, B., Richardson, I. & Moss, H. ‘Follow the Musical Road’: A guide to select an appropriate music experience for people with dementia living in the community. Int. J. Environ. Res. Public Health 2023, 20(10), 5818; https://doi.org/10.3390/ijerph20105818 (registering DOI) 

2. Kelly L, Richardson I, Moss H.  Reducing rural isolation through music: telehealth music therapy for community dwelling people living with dementia and their family caregivers in rural Ireland. Rural and Remote Health 2023; 23: 8162. https://doi.org/10.22605/RRH8162 

3. Kelly, L., Togher, K., Connolly, R., Killeen, B., Richardson, I., & Moss, H. (2023). Investigating the potential benefits of an online music-based meditation programme for family carers of people with dementia: An exploratory study. Approaches: An Interdisciplinary Journal of Music Therapy, [accepted, in press].  

4. Lee, O’Neill & Moss (2022) Promoting well-being among people with early-stage dementia and their family carers through community-based group singing: a phenomenological study, Arts & Health, 14:1, 85-101, DOI: 10.1080/17533015.2020.1839776 

5. Lee, S., O’Neill, D. and Moss, H. (2021) Dementia-inclusive group-singing online during COVID-19: A qualitative exploration, Nordic Journal of Music Therapy, 1-19,   htttp://dx.doi.org/10.1080/08098131.2021.1963315

6. Moss, H*., Lee, S., Clifford, A., Ni Bhriain, O. & O’Neill, D. (2021) Together in song: Designing a singing for health group intervention for older people living in the community Nordic Journal of Music Therapy Published online: 30 Nov 2021 https://doi.org/10.1080/08098131.2021.2004613  

Research grants  

External Research Grants as Co-Investigator or Academic Collaborator 2018 - 23 

1. €378,133.00 (2021) Funded by Health Research Board (DIFA). Title:MinDful: Music and Dance For Older adults: The Feasibility of an Arts Based Health Intervention for Health and Wellbeing. PI: Amanda Clifford (physiotherapy). Co-applicant* (1 – 4) Duration: 2 years 

2. €9,000.00 (2020) Funded by LERO, UL. Title: Telehealth music therapy research. PI: Lisa Kelly (Music Therapy PhD student). Co-applicant* (2, 4, 5) Duration: 6 months 

3. €26,979.00 (2019) Funded by Welcome Trust. Title: Framing Aging: International Interdisciplinary perspectives on cultural gerontology. PI: Desmond O'Neill (Medicine). Collaborator (1, 3, 5) Duration: 2 years 

4. €48,000.00 (2019) Funded by IRC PhD Scholarship. Title: An investigation of the health benefits of singing for people with dementia and their family carers. PI: Sophie Lee (music). PhD supervisor (1,3) Duration: 2 years 

5. €297,662.00 (2019) Funded by HRI Aging Research cluster. Title: Aging Research. PI: Katie Robinson (Occupational therapy). Co-applicant* (1, 2, 3, 4). Duration: 5 years 

6. €50,344.00 (2018) Funded by HRI Seed funding. Title: Social dance for older adults following hospital discharge. PI: Amanda Clifford (physiotherapy) Co-applicant* (1 – 4) Duration: 1 year 

Alzheimer’s Sof Ireland Oct 2022 PPI research fund phase 2 of song writing project €2500. 

7. PPI Bursaries Scheme 2022 Kelly, L., Moss, H., Richardson, I & Kelly, C: Title: ‘Where words fail, music speaks’: Using music to explore the experiences of people living with dementia taking part in a PPI group €1000. 

Funding as principal applicant 2018 – 23 

1. €5,000.00 (2020) Funded by HSE Wellbeing funds, Title: Music and wellbeing UHL, event /research (1,2,3) Duration 6 months. 

2. €5,000.00 (2020) Funded by IRC New Foundations, Title: Music, dementia, and the brain public seminar (1,2)