John Hammond, Alzheimer’s Society Research Network volunteer opened ‘The Future of Dementia Diagnostics’ roundtable with leaders in the field. He shared his story of getting a diagnosis for his Mum, painting a picture of the reality of diagnosis today.
Imagine an opportunity to meet leading academics, researchers, industry professionals and policy makers at an event where the future of improved dementia diagnostics is discussed collaboratively and with conviction from all. Now imagine that you, an Alzheimer’s Society volunteer with lived experience of caring for and supporting a parent who lived with dementia, have been invited to speak to this panel of esteemed professionals.
Well that opportunity was given to me when I was asked to be the first presenter at ‘The Future of Dementia Diagnostics’ round table discussion on 7 October hosted by Alzheimer’s Society and the Dementia Industry Group!
I used the platform to speak about my story, and the stories of others, of the often complex and confusing pathways to dementia diagnosis, and the essential importance of early and accurate diagnosis.
My journey through diagnosis began when after a fall at home, my Mum was admitted to hospital. Whilst there, I was advised that she was to be given a diagnosis of Alzheimer’s disease. At the time, she was deemed ‘not well enough’ to be told the diagnosis herself. This sadly meant Mum was never given the opportunity to discuss this herself with a medical professional. As a result, she became increasingly confused and uncertain of her changing health.
Mum’s symptoms worsened rapidly and there remained lingering doubts of the accuracy of her Alzheimer’s disease diagnosis and whether a mixed dementia diagnosis was more accurate. Unfortunately, due to the significant and rapid changes to her health, Mum was unable to be re-assessed.
This experience informed my core belief that the diagnosis process can be improved and reinforced my hopes for the future of a diagnosis journey that is grounded always in compassion and humanity.
Hope for the future
I felt very much that this discussion event was the first essential step that this Dementia Industry Group took towards making lasting change for more accurate and timely diagnosis of dementia in the future. It was exciting and uplifting to be a part of.
Thank you to the Society for your commitment to ensuring that volunteers and those with lived experience, like me, are a valued part of discussions at all levels and are an integral part of a continuing collaborative effort to improve the lives of people with dementia.
Stories from the Research Network
Read more stories from our wonderful Research Network volunteers.