Evidence and Impact
Dementia is a term used to describe a group of syndromes including Alzheimer’s disease, which are characterised by deterioration in cognitive functioning. Dementia affects memory, mood, comprehension and communication and has been identified by the World Health Organisation (WHO, 2017) as one of the major causes of disability worldwide, impacting on both the person and their caregivers and families.
At present it is estimated that 47.5 million people have dementia (Alzheimer’s Disease International 2015). In the absence of a cure, emphasis has been placed on the development of approaches and interventions that focus on quality of life. Post-diagnostic support, where individuals are supported to develop strategies to live well with the condition, has formed the basis of global health policy (Department of Health 2016).
Whilst there is a growing interest in the role that design-led interventions can play in promoting quality of life of people with dementia (e.g. Treadaway, 2018), to date little attention has been paid to the role of design in post-diagnostic support in the context of health-care services.
Journeying through dementia is the first design led research enquiry to interrogate the role of design and creative practice in post-diagnostic dementia support. An iterative co-design research process has drawn on the insights of people living with the condition and clinicians to underpin the development of a set of curated creative tools to enable people to live well with dementia.
“As people with dementia, we have unique knowledge and understanding of our needs. We want to work in equal partnership with AHPs and other professionals, building our resilience and enhancing our self management capabilities.”
Journeying Through Dementia #Scotland
Journeying through Dementia is cited as a key element of the AHP Scottish policy, Connecting People, Connecting Support. This has been successfully implemented in health services in Fife and Aberdeenshire. The Alliance self-management funding has been secured by Elaine Hunter (AHP consultant and Lead for Policy and Research) for roll out across a further 7 Boards in Scotland, in 2021. The following video shares some of the feedback from the facilitators of successful groups across Fife and Aberdeenshire:
“The Journey through Dementia’ group enables patients to face the future with hope that life can be lived well. It aligns with our occupational therapy philosophy, looking for strengths, concentrating on the person and what is important for them and the importance of occupation in all our lives.”
“Journeying through Dementia has been a key component in the delivery of the dementia strategy for Allied Health Professionals in Scotland. Evaluation of its impact in the first 2 demonstrator sites in Scotland showed that 71% of participants who engaged in the programme reported improved quality of life (QoL-AD)”
Journeying Through Dementia #International
Journeying through Dementia is now being used by health services nationally (East Sussex NHS Trust, Sheffield, West Wales) and is part of the West Wales dementia wellbeing pathway which is available within each of the 3 counties and 4 memory assessment services.
Examples of national and international dissemination of the work include: Invited keynotes: Craig and Fisher (2018): Connecting Communities through Design (policy roll out event) Dumfries and Galloway; Craig (2018) What can practice learn from people living with dementia in Dementia Lab, Newcastle-upon-Tyne, Craig (2017): Redesigning Dementia: Aukland, New Zealand in Design and the Ageing Brain Symposium.
The programme has formed the basis of curriculum developments in the education of Allied Health Professionals in the Netherlands (Hogeschool Zuyd), ZHAW Institute Zurich and Malta University. Funding through Royal College of Surgeons, Ireland trained 100 clinicians to support the roll out of the intervention across services and the work formed the basis of the invited keynote: Craig (2015) The value of ingenuity and creativity in fostering community connectedness for people with dementia: University College Cork.
References
Connecting People, Connecting Support Online is cited in the NHS England response to COVID-19 (dementia wellbeing in the COVID-19 pandemic: (https://www.england.nhs.uk/publication/dementia-wellbeing-in-the-covid-19-pandemic/ )
Sheffield strategy: Alzheimer Scotland and is endorsed by the Royal College of Occupational Therapists: (https://www.rcot.co.uk/practice-resources/occupational-therapy-topics/digital-first-occupational-therapy).
Connecting People, Connecting Support; Transforming the allied health professionals contribution to supporting people living with dementia in Scotland. Alzheimer Scotland and Scottish Government Policy.