Getting Along – the blog of the pilot – Filling the peri-diagnostic gap.
Thanks to an awards for all grant via the Big Lottery and with the backing of Innovations in Dementia of whom I am proud to be an associate, last year I carried out a project I had been hoping to deliver for a decade. This post will cover the rationale, delivery and findings of that work. It may challenge and may be full of opinion. I hope so. That is my aim
The big push for earlier diagnosis and higher rates of diagnosis is good if it were to be matched with support services that go alongside that. At this year’s Dementia Congress we heard eloquently and passionately from two men who both said that receiving a diagnosis was like being pushed off a cliff, because there was just nothing they could see to help them following moths of tests and assessments. What’s more, what has always struck me is that by the time someone has gone to the GP for the first time, probably about 18 months has passed by where people have being thinking ‘what’s happening to me/us?’ Add a further 3-6 months going through the diagnostic process and you have up to 2 years without support.
I have always been convinced that diagnostic involvement can begin long before the diagnostic process is complete. Getting Along was something that I felt could help fill that peri-diagnostic gap.
For years I’d notice domestic strife between families and couples I’d visit. ‘Was it all a sham?’ asked one gentleman, whose wife had dementia, about his marriage of over 40 years. I was reminded of that famous interview that Princess Diana gave to Martin Basheer all those years ago when she said ‘there are 3 people in this marriage’. Far be it from me to equate Camilla Parker Bowles (as was) with dementia! The presence of a third party within a relationship, driving a wedge between the couple, is what I witnessed time and again amongst those I was visiting. This third party was something that I felt needed to be acknowledged – Dementia was in many cases the ‘Elephant in the room’.
Surely I am not the only front line worker to witness the insidious nature of dementia being made manifest through domestic strife, point scoring, power struggles, and niggling arguments. How sad and frustrating to witness. How draining it appeared to live with! Another visual comparison for me was the domestic tug of war with both parties pulling in opposite directions when trying to deal with the same problem. What I would see then were frequent antagonisms within families and particularly between couples. What worried me was that in my work I was not attending them. I was visiting to evaluate my service, perhaps tick a box; or to help with filling out benefit forms. I needed to respond – we all do! Couples were desperate for someone to help with this.