How collaborative approaches can support people living with dementia to be ‘in the driving seat’ of research

Philly Hare interviews George Rook to discuss what effective involvement of people living with dementia might look like. They share learning from the Dementia Enquirers Programme, sharing the key learning points for leaders.

Innovations in Dementia supports people with dementia to keep control of their lives and be happy. People with dementia are at the heart and start of all their work. They promote a positive view of dementia, demonstrating that although dementia is life changing, it does not have to be life ending.  

George Rook was diagnosed with mixed dementia in 2014, aged 62. Since then, he has set up the Shropshire Dementia Action Alliance, joined the DEEP Enquirers group and carried out two research projects, and chairs the Shropshire, Telford and Wrekin Dementia Steering Group. He facilitates a DEEP group in Shrewsbury.  

Philly Hare is a Co-Director at Innovations in Dementia. Philly’s particular interests are the empowerment and inclusion of people with dementia, and the application of research evidence to practice. As a qualified social worker, she has experience within the NHS, Local Authorities and the voluntary sector in many areas of adult social care.  

Talking points 

This video looks at: 

• Different strategies for involving people living with dementia. 

• How meetings can be made accessible. 

• Effective communication. 

• What good online environments look like. 

• The importance of small, short, sharp sessions and meetings. 

• Why jargons and acronyms should be avoided. 

Resources that are mentioned in this video 

• I want to speak please cards.

Related resources

• Dementia Enquirers Project: Enabling people with dementia to lead research.
• Enablement in dementia: Practice Tool.

Reflective questions 

Here are reflective questions to stimulate conversation and support practice.   

1. What systems and structures can you put in place to effectively involve people living with dementia? 
2. What might you do to develop good relationships to enable effective co-production?