Jeff Seneviratne was a founding member of our Dementia Carers Expert Reference Group
In February 2019 someone suggested that I might be interested in attending a Dementia Carers workshop organised by Dementia United and TIDE (Together in Dementia Everyday). My wife had Alzheimer’s, having been diagnosed in 2014, and at this stage I was accepting that I was now her carer.
The purpose of the workshop was to recruit current and former carers of people with dementia to join this new group which would inform the Dementia United programme. They wanted people with passion to make a difference and a positive attitude to consider applying. This was the beginning of the Dementia Carers Expert Reference Group (DCERG).
From the time of diagnosis, we had largely felt as though we were “on our own”, monitoring the progression of this disease. The diagnostic process had been long drawn out, and I had to chase appointments, and we felt in limbo. Afterwards, there was no regular follow up to assess changing needs. Our lives had changed significantly over the preceding 5 years and many things were becoming more difficult. However, I knew that there was much that needed to be done to improve the diagnosis and continuing care of people with dementia and those who care for them. I felt that this would be an opportunity to influence and use our experience to make improvements. So, with the support of my family and friends, I decided to apply.
The DCERG took a while to get up to speed but I really do feel that the last 4 years have been time well spent and that we have made a difference.
- I believe we really are valued and respected as “Experts by Experience”.
- We are represented at the Dementia United Strategic Board and at other Dementia United meetings.
- We are consulted on Dementia United developments and have contributed to the Strategic and Delivery Plan.
- We have been closely involved with the development of the Dementia Care Pathway, a valuable GM Specific web-based resource for people living with dementia, carers and professional.
- We were associated with the development of the wellbeing plan as a vehicle to assist navigation post diagnosis. This is now being digitised and I am involved with the project group to demonstrate proof of value.
- Other members of DCERG have been closely associated with projects about dealing with delirium and end-of-life care
In June 2022 Dementia United held an event in Manchester with the aim of identifying how to live well with dementia in Greater Manchester. It was an honour to be invited to be a member of the panel at this event with, among others, Andy Burnham, Mayor of Greater Manchester, and the Chief Executive of the Alzheimer’s Society. Following this, in October, I was one of a number of DCERG members who contributed to a discussion about improving dementia care at the Greater Manchester Reform Board, chaired by Andy Burnham.
The DCERG is an important element of Dementia United and it is clear that it has had a significant impact on its work and continues to do so. The original aim was for there to be two representatives for each of the ten boroughs of Greater Manchester. At the present time this has not been achieved. Recruitment of new members is an important part of any group both to ensure wide representation and to allow for turnover.
Would you like to get involved with DCERG?
We’re currently recruiting for members to join the Dementia Carers Expert Reference Group. If you are over 16 and are a current or previous carer for someone living with dementia, or if you know someone who might be interested, we would love you to hear from you. DCERG flyer March 2023
Please contact Amal on 07917511678 or firstname.lastname@example.org if you would like to have an informal chat about the group.