After receiving feedback from local carers of people with a dementia diagnosis that after the diagnosis was received, they felt there was a lack of information about local support services. They stated that they didn’t know where to turn to access services and often didn’t know what was available to them.
Acting on this we contacted local organisations that work with people with a dementia diagnosis and through discussions learned that people could wait up to a year from presenting at their GP until the final diagnosis. It became apparent that during this valuable time, people should be preparing for their futures at this point.
Alongside these key partners and 3 people, (the working group) with lived experience of caring for their loved one with dementia, an initial meeting was held on 9th Sept 2024 and it was decided that 2 documents would be produced, one with information to support people while they are waiting for a diagnosis and another which will be available to people and their carers after a diagnosis has been received. It was agreed that the documents will be hosted on the Healthwatch Sunderland website, where they will be kept up to date, with the support of the group of professionals who make up the working group. This will allow professionals and members of the public to print the most up-to-date information.
A further meeting took place on 7th October where the initial content of the documents was agreed and work will now progress on the co-production of the 2 documents.
Watch this space for updates!