Development and evaluation of recovery focused group and Skype self management programmes for people living with early dementia and their carers Dr Andy Turner, Coventry University Dr Nicky Bradbury, Birmingham & Solihull Mental Health Foundation Trust West Midlands South HIEC “The most exciting innovation of the connected health era is peers talking with each other. It can happen online or offline, via , phone or on a message board.“

Policy context: >1 million people in the UK living with dementia by 2021 National dementia strategy (2009) emphasises early diagnosis and intervention and development of structured peer support Prime Minister’s Challenge (2012) committed to drive improvements in earlier diagnosis, create dementia friendly communities and support more research

WM-AHSN themes: High Impact Innovation; Digital Healthcare; Education & Training; Care Pathways. Project Aims Develop and evaluate group and Skype- based self-management programmes (SMPs) for people living with early dementia (PLWeD) and their carers. Train dementia workforce and service users to deliver SMPs

SMP content Session 1 Opening and introduction Course overview: what do we mean by Self- management? Gratitude activity Practice better breathing – square breathing Goal setting Session 2 Feedback from goal setting Gratitude activity Relaxation Kim’s Game Sharing memory tips and strategies Goal setting Session 3 Feedback from goal setting and memory tips activity Gratitude activity (Separated activity) What is it like to live with dementia or care for someone living with dementia? Relaxation activity Life Story Work Goal setting Session 4 Feedback from goal setting and life story work Gratitude activity Identifying personal strengths What makes us happy Relaxation Goal setting Session 5 Feedback from goal setting and identifying personal strengths Gratitude activity – guided imagery Relaxation (Separated activity) Managing emotions Staying active and healthy Goal setting Session 6 Feedback from goal setting Gratitude activity Relaxation (Separated activity) Roles and relationships Q&A session: discussion around dementia Sharing successes Course close

Outcomes maintained at 4 months follow up Quality of life Memory controllability Anxiety and depression Positive mental wellbeing Hope Caregiver burden

Focus groups with PLWeD Greater acceptance Less stigma More hope Positive approach to living well with dementia Improved quality of life Skype family overseas –“It just helps knowing you’re not on your own, so I’m not an oddball” –“Their experiences and the ways they’re dealing with it, that has helped me. It has made me confident” –“I noticed that my whole family is appreciating more what I was going through…they’re more understanding”

Focus groups with carers Less non judgmental Less blaming Greater awareness More collaborative More accepting “It’s raised my awareness of the condition...I’m very mindful that we don’t take over, they still have some form of autonomy.” “When I see the behaviour instead of getting irritable I try to understand it, see how I can manage it effectively”

Outputs Group-based SMP manuals Web-based SMP developed and tested 18 SMPs delivered by BSMHFT and CWPT > 30 facilitators trained SMP in the ‘menu’ of early interventions on the BSMHFT memory assessment PLWeD and carers joined Coventry University research support group

Focus groups with facilitators Enjoyed delivering an intervention that has very positive messages at its core. Enjoyed relating to participants an a more equal plane,as opposed to expert / knowledge recipient. Valued using some of the behaviour change techniques such as goal setting and gratitude exercises in their own life.

Potential role of the WM-AHSN Increase adoption and dissemination of SMPs among WM AHSN partners and beyond Increase facilitator training (including service users ) to support SMP spread through LETC for mental health Further develop the online SMP with technology partners Link with other academic, research, clinical and technology partners to support multi-centre RCT

Thank you