Creative Support: Building Bonds Through Play for People with Early Onset Dementia and Their Caregivers

Derby and Northampton Universities will conduct research on the impact of a new drama workshop for people with younger onset dementia and their caregiver(s), aged under 65 years. The project will develop a toolkit to be used at home, offering an output with reach beyond this project. The project leads have expertise in working with people with dementia and drama therapy, which are central to the aims of this research.

There has been an increasing interest in using arts with people with dementia. These tend to focus on engagement through music, dance and museums, and are aimed at those in later life and/or in care homes. There is little focus on using drama for those under the age of 65 and who live in the community. The research aims to find out if younger people with dementia and their caregiver(s) feel there is a benefit in attending the drama workshops, and whether this approach strengthens relationships with this group. The project will explore the potential for drama techniques to be used at home between or after the workshops, with the aid of a personalised toolkit, made during the sessions. This research will address a gap in understanding the role of drama to support those with younger onset dementia and their caregiver(s).

The project will invite two groups of five pairs, a person with younger onset dementia and their caregiver(s), to attend 10-weekly drama workshops. Each session will be two hours, with time for coffee. Support will be provided by a drama expert, two researchers and a volunteering dementia expert from Dementia UK. The workshops are based on a method called Neuro Dramatic Play (Jennings 2011). NDP is a relational model that builds resilience, the ability to cope, into creative play. It uses rhythm, play and sensory aspects to support the bonds between people. Originally developed for use with children, NDP has successfully been adapted for use with older people with dementia (Jaaniste 2017). Drawing on this adaptation, Creative Support will use this novel approach with people with younger onset dementia and their caregiver(s). The workshops will draw upon a range of activities, including: drama, role-play, storytelling, sound, art and music making, movement and rhythm, to create images, scenes and stories.

The project will use a mixed methods case study design, with data collected at the start, end, and 8 months post workshops. The longitudinal data will explore the potential for longer lasting changes. The methods will include: video recordings of the drama workshops, interviews and post workshop reflections, and use of validated measures on: quality of life, resilience, and attachment.

A group of people living with younger onset dementia, their caregiver(s), dementia and creative arts experts will form a consultation panel to help test the ideas and methods that shape the project towards a larger national study. The panel will help to develop ideas for the workshops, toolkit, and will trial different research methods. The panel will feedback on using these methods, sharing what it felt like, providing valuable information on how to plan for a future study.

Benefits of the project could be improved quality of life and ability to manage a dementia diagnosis for participants and the impact that this has on their relationship with their caregiver(s). This project will provide new knowledge on the delivery of drama and an at home toolkit for use by service providers and people with dementia outside of this project. It will lead to knowledge on the adaptation of NDP, of benefit to other artists, drama and dementia services. Knowledge will also be gained on suitable research methods to capture data on impact of arts engagement. This will provide valuable knowledge for researchers of therapeutic arts, ageing and dementia including supporting services to evaluate their own work.