Getting Along© is a short programme that supports couples to work together to explore the impact of dementia within their relationship and to find mutual ways to overcome any presenting difficulties. Earlier posts in this blog have focussed more specifically on the rationale for Getting Along©, but with the Lottery – funded programme well underway in York and no small number of magic moments cropping up I feel an update on the practical work is due.
I’ve had referrals for couples where one partner has been recently diagnosed; where one partner has been living with dementia for several years; and where one partner is about to undergo further investigation into an obvious cognitive impairment.
The increasing call for early diagnosis (the Prime Minister’s Dementia Challenge) still leaves a gap in actual practical peri- and post-diagnostic support. The Getting Along© programme is, however, proving to be something that not only can fill that gap, but that works too.
The current Getting Along© project is already making 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. Kate Swaffer’s recent blog post highlights some of these iniquities http://kateswaffer.com/2015/01/30/people-with-dementia-have-feelings-too/ and 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”.
So as the programme continues a current reflection as facilitator is that this work is both necessary and something that can be carried out by any front line staff. 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. We need to broach what aren’t really awkward topics because what I’m finding 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..
DAMIAN MURPHY – GETTING ALONG© PROJECT LEAD