The increasing call for early dementia diagnoses still leaves a gap in actual practical peri- and post-diagnostic support.
The Getting Along© programme is something that not only can fill that gap, but that works too. The recent Getting Along pilot in York made a real difference in equipping couples at an early stage face up to the presence of a dementia in their midst; it can level the playing field within the relationship when one partner has an impairment; and it can go a long way to putting an end to the iniquitous and prevailing stress and burden model of care that implies blame on the person living with the condition.
The call for both voices to be heard can be seen in a few of the following exchanges carer: ‘ I have to live a double life, staying one step ahead of you all the time’ person with dementia: ‘yes, but that’s what antagonises me’ carer: ‘but you explode at harmless things I say' person with dementia: ‘but I have to, otherwise I’m nobody’
All parties so far have found talking about dementia in lay terms linked to daily shared experiences, misunderstandings and arguments as extremely useful, and as something that more formal courses or information literature could not provide as effectively.
Current stakeholders in the programme have shared opinions too on their involvement so far: The consultant psychiatrist: “the couple I saw in clinic today … were noticeably more relaxed with each other and both understand much more about the diagnosis. Their recommendation was that every couple should have access to this intervention”
Mrs A (living with dementia) “I’ve learnt a lot. Acceptance…I’ve learnt not to be afraid… I feel a different person now. It all changed for me since talking to Damian (Getting Along© facilitator’)
Mr A (Husband of above) ‘I’ve learnt a great deal… I’ve been able to say things to Damian (with my wife present) that I would have been wary of saying before for fear of an argument… To equip couples to live better with dementia – well you’ve ticked that box”.
This is something that can be carried out by any front line staff and not extra work but an alternative way of working. We already have enough front line contact with couples. We just need to enhance the quality of a lot of that contact and move on from just tea and sympathy. What we found is that people want to talk.
Let’s put an end to the blame-laden stress and burden model and to support people to carry on
Getting Along.. a link to the film we made of the project is here - we hope you find more than just its beauty of interest http://www.innovationsindementia.org.uk/videos_gettingalong.htm