I cared for my husband Edward who was diagnosed with early onset Alzheimer’s. It took a long time to get the diagnosis as the doctors did not think Edward had dementia as he was a successful businessman and symptoms could be due to stress. He was eventually diagnosed with early onset Alzheimers Disease in 2008 after several more unusual symptoms had developed. I cared for Edward at home initially and saw his gradual decline. I had to do everything for him – bathe him, dress and feed him. It was very challenging and difficult for me to understand what was going on in Edward’s mind. It was a stressful time for me with crisis points. It took longer for Edward to do thing that he used to do competently before. I cared for Edward for several years at home, before he went into full-time Dementia nursing care. I used to go to the nursing home every day, as I knew him best and I knew what he needed. It had a big impact on my health physically and mentally. He died in the end stages of dementia in September 2016. Now that I know so much, I am passionate about sharing my experience and helping other carers of people with dementia. Only now, I have refocused with the Dementia Carers Expert Reference Group (DCERG), it gave me a focus and purpose in life. With DCERG it is possible for me to help others, I can support the members who are still on the dementia journey.
DCERG is a joint initiative with tide, together in dementia every day and Dementia United. One of our roles as DCERG is to look at protocols and strategies. People may not always consider us as experts by experience, but DCERG gives us power and parity with professionals, we can all make a difference in our localities of Greater Manchester.
I am Chair of DCERG and have been invited to speak at National conferences about our work and my personal experience. I have contacts with professionals, nurses, commissioners and other organisations. I have been invited to join working groups at local hospitals, Lived experience Panel looking at frailty and End of Life guidelines. My interests include end of life care and early onset dementia. As Chair, I go to the Dementia United Strategic Board and Implementation Group meetings where we can feed information up to them and from them to carers.
I am very passionate about our work, we have done so much work in localities – in Salford, Rochdale, Stockport, and we constantly work behind the scenes. Plans for DCERG: we are getting more and more involved in localities, the mission of Dementia United is to make Greater Manchester the best place in the country to live for people with dementia and we are keen for that to move further. We are sharing experiences with each other, I am also on a steering group at a local hospital inputting into their dementia strategy. We aim to improve the well being of unpaid carers.
I attend local seminars, speak at local and national meetings. We are forging ahead with relationships with CCGs, local social services, professionals in hospitals and communities. Carers on the group get involved with other carers’ groups and get involved with the Task and Finish groups. Opportunities for getting more and more involved will continue. In terms of support, the group needs some financial support with attending meetings, travelling to speaking opportunities and network support from Dementia United and from the locality leads. We are supporting the leads and we are raising each other’s profile.
We are experts by experience – unpaid carers, not for a wage. We are being asked for input into consultation documents, we have valid comments and we contribute our expertise. We can feed back to Dementia United and feed out to the network. It’s exciting what is happening, people talk about it. I wish I had this input when my husband was going through the dementia journey.