A diagnosis of Dementia can be devastating. What I found particularly hard though, was the complete absence of tangible support, following diagnosis.
With dementia, unlike other diagnoses, there is generally no follow-up, you are simply given the news and that’s about it. All the dread of a terminal diagnosis, with no ongoing support or palliative care.
In the seven years since my husband’s diagnosis (Alzheimer’s and Vascular Dementia) we’ve progressed through all the usual stages. I guess you could say, I’ve been through a kind of ‘dementia-curriculum,’ absorbing the information I found so lacking, post-diagnosis.
Thinking back to what I would have liked, in those early shell-shocked days (information, support, the knowledge/ experiences of other carers) led to my setting up the Dementia-Links-Sutton Facebook and Web-page.
It’s early days yet but I hope this will become a peer-dementia platform signposting, support and information. I do see this very much as a group-support initiative, so I welcome your feedback, ideas and recommendations.
Thank you.
Julie
