Jane, Researcher at The Awen Institute, has over 25 years’ experience in gerontological research, nursing and education. Her overarching passion is to find effective and meaningful ways for people living with neurodegenerative conditions and stroke to communicate their needs, where they experience expressive and receptive language difficulties.
As a Dementia Research Nurse Specialist in the Memory Clinics of Bath (Research Institute for the Care of Older People) and Cardiff, she provided support to people and their families/carers during their diagnosis and ongoing care. This included undertaking qualitative and quantitative research studies in mild cognitive impairment and dementia and the running of multi-centre trials of the first licensed drugs for Alzheimer’s disease and vascular dementia (donepezil, galantamine, rivastigmine, memantine). She also assisted PhD students with their dementia related research on meta memory and visual processing in Alzheimer’s disease.
Other roles include Research Manager at the Welsh Epilepsy Unit, University Hospital Wales and Research Associate at the Older People & Ageing Research & Development Network (OPAN), Swansea University. Here, she undertook qualitative and quantitative studies exploring epilepsy, anxiety and medication failure and artists’ (living with epilepsy) perceptions on how their seizures impacted their creativity. At OPAN she facilitated focus groups exploring the characteristics of outdoor falls with older people.
Her quest to bring creativity into her practice led to her PhD research: A Suitcase of Memories, a Sensory Ethnography of Tourism and Dementia with Older People. This involved adapting a novel research methodology to help overcome some of the communication and mental capacity difficulties that people living with moderate dementia experience.
Some of her contributions include: how to undertake ethical research with people living with changes in mental capacity, cognition, language and mood caused by neurodegenerative disease, using meaningful and ongoing consent; the use of Sensory Ethnography as an arts-based methodology which included the creation of a digital film with soundscapes (co-produced with the co-researchers and disseminated by them, showing the film at their Forget Me Not group), examination of tactile objects, performance and the sharing of food and drink (stimulating memory and communication); the development of a creative multisensory toolbox that can be used to provide pleasurable ways for people to express themselves and help them reconnect with their partners/families; and development of a set of recommendations for service providers supporting people living with moderate dementia and their partners and for the wider tourism industry
Her role as a research participant and member of the research governance advisory team on the LAUGH® project with Cathy Treadaway, Professor of Creative Practice at The Cardiff School of Art and Design culminated in the creation of HUG; a sensory device designed to bring pleasure and comfort to people living with dementia.
Her nursing and education experience include managing a care home for older adults, delivering “experiencing dementia;” ethnodrama performance training with http://www.re-live.org.uk/, developing DUETcare (dignity, understanding and empathy training) and authoring her blog and book: Finding the Light in Dementia, a Guide for Families, Friends and Caregivers.
