Development and evaluation of recovery
focused group and Skype self
management programmes for people
living with early dementia and their carers
“The most exciting innovation of
the connected health era is
peers talking with each other. It
can happen online or offline, via
email, phone or on a message
board.“
Dr Andy Turner, Coventry University
Dr Nicky Bradbury, Birmingham & Solihull Mental Health
Foundation Trust
West Midlands South HIEC
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
Project Aims
• Develop and evaluate group and Skypebased self-management programmes
(SMPs) for people living with early dementia
(PLWeD) and their carers.
• Train dementia workforce and service users
to deliver SMPs
WM-AHSN themes: High Impact Innovation; Digital
Healthcare; Education & Training; Care Pathways.
SMP content
Session 1
Session 4
Opening and introduction
Course overview: what do we mean by Selfmanagement?
Gratitude activity
Practice better breathing – square breathing
Goal setting
Feedback from goal setting and life story work
Gratitude activity
Identifying personal strengths
What makes us happy
Relaxation
Goal setting
Session 2
Session 5
Feedback from goal setting
Gratitude activity
Relaxation
Kim’s Game
Sharing memory tips and strategies
Goal setting
Feedback from goal setting and identifying
personal strengths
Gratitude activity – guided imagery
Relaxation
(Separated activity) Managing emotions
Staying active and healthy
Goal setting
Session 3
Session 6
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
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
• Email: a.turner@coventry.ac.uk