Designing Innovative Interventions with People Living with Dementia

The key aim of this design fellowship is to understand better how design thinking and action can contribute to the development of a range of enhanced products, services, and systems for people living with dementia. These designed interventions will be created in collaboration with Alzheimer Scotland, the main collaborating organization, people living with dementia and their carers, the Alzheimer Scotland Centre for Policy and Practice at the University of the West of Scotland, the Scottish Dementia Working Group, National Carers Action Network, and other relevant bodies. In the UK there are an estimated 800,000 people with dementia with a current cost of over £23 billion. Responding to this challenge will require innovative ways of supporting people with dementia to live well from the early stages of the illness. The Design Fellowship will be focused on this key early stage in the dementia journey. Whilst there are an estimated 88,000 people with dementia in Scotland, only 50% of cases have been identified. Alzheimer Scotland works directly with over 60 link workers who provide post-diagnostic support. The key aim of this research is to develop disruptive design interventions (e.g. products, systems, services) for breaking the cycle of well-formed opinions, strategies, mindsets, and ways-of-doing, that tend to remain unchallenged in the health and social care of people living with dementia in the UK. The project aims to:
1. Help change the perception of dementia by showing people with dementia they can offer much to UK society after diagnosis.
2. Create a series of designed interventions that will reconnect people recently diagnosed with dementia to build self-esteem, identity and dignity.
3. Develop interventions that will provide ongoing benefits in keeping the person with dementia connected to their community, delaying the need for formal support and avoid the need for crisis responses.
4. Explore how prevention and early intervention might enable both carers and people living with dementia to have greater choice and control in their lives.
5. Work with people recently diagnosed and their carers to participate in the creation of the designed interventions and develop and test these interventions in a number of Alzheimer Scotland's Dementia Resource Centres and Dementia Cafes located throughout Scotland.
The fellowship will adopt a largely interventionist approach, which is based on a number of emerging theories emanating from research in economics, business, and design. This disruptive design interventionist approach, which celebrates jumping straight in, doing things in order to learn new things, and valuing failure, involves a three-step process (observing, reflecting, and acting) over the course of the 12 months. A number of disruptive design workshops will be held during the design research fellowship. Workshops will be held with people living with dementia, their carer(s), staff from Alzheimer Scotland and other relevant stakeholders. The aim being to disrupt the cycle of well-formed opinions, strategies, mindsets, and ways-of-doing, that tend to remain unchallenged in the health and social care of people living with dementia in the UK. Dissemination will managed by the fellow in conjunction with Alzheimer Scotland's Communications Team. The project will seek to engage with both academic and public audiences, which will help to increase the accessibility of the research work conducted to the general public. The Fellow will disseminate project outcomes to the public via hands-on sessions at a number of Alzheimer Scotland's Dementia Cafes, Resource Centres and through Alzheimer Scotland connections within local communities. The development and evaluation of the proposed design interventions will help to address the significant lack of evidence on outcomes and the current state of service delivery for people living with dementia and their carer(s) in the UK. In short, it will help improve the evidence base.

Being embedded within Alzheimer Scotland will provide the design research fellow (Rodgers) with access to a wide range of expert practitioners and specialist staff. This will also give direct access to working directly with people living with dementia and will allow the research fellow to gain substantial "hands-on" experience in real, live contexts where designed interventions will be created, used, evaluated, and implemented with a wide range of stakeholders including people living with dementia and dementia support workers. This will substantially enhance the research fellow's knowledge and understanding of how design can play a transformational role in the health and social care of vulnerable people as well as provide the wider academic team at Northumbria University, Design Department with experience of an AHRC Design Research Fellowship working with a leading care service provider. The proposed fellowship will examine how disruptive design interventions can play a key role in health and social care provision and help change society's perceptions of dementia by showing people living with dementia can offer much to UK society after diagnosis. The research fellowship will also help identify the major consequences of caring for people living with dementia and consider how prevention and early intervention through disruptive designed products, systems, services might enable both carers and people living with dementia to have greater choice and control in their lives. The impact of this research will be managed and disseminated via a range of local, regional, and national channels and managed collaboratively by the applicant, the proposed Steering Committee and members of Alzheimer Scotland's Communications Team. Communication channels will include local, regional and national dementia networks including the Scottish Dementia Working Group and the National Dementia Carers Action Network that will be open to a public as well as academic audience. Other channels will include public bodies and agencies, including those represented by the research fellow and the Alzheimer Scotland team who will provide an effective context for the dissemination of the research findings, as well as established and relevant UK based conferences, journals and press magazines. International channels will include the proposed research blog "Disrupting Dementia" disseminated via Alzheimer Scotland's website and network partners, international journals and conferences, and other established collaborations of the research fellow and Alzheimer Scotland team. The fellowship's impact will start immediately once funding has been secured. At this stage the dedicated blog "Disrupting Dementia" on Alzheimer Scotland's main website will be developed. Information on the proposed research fellowship will be disseminated to Alzheimer Scotland's dementia care network for them to distribute, in turn, to an even wider national and international audience. Longer-term impact will be managed via the development of an exploitation plan throughout the fellowship, exploring opportunities with Northumbria University's Commercialisation and Engagement Departments. Northumbria University's Design Department has a strong reputation in design research and is an excellent provider of dedicated training, CDP activities, and capacity building support for commercial, public and third sector organizations. The potential impact of the proposed research extends to include social, cultural and quality of life contexts. The range of exploitation channels is very broad, ranging from academia through to third and fourth sector service organisations. Outputs are planned in a range of disruptive design formats (e.g. short films, promotional campaigns, performances, exhibitions, and city centre interventions, etc.) that allow us to match dissemination methods to potential beneficiaries.