Filling the peri-diagnostioc gap –BLOG 2 of 3 Time to be Getting Along©

In this second part of my Blog I wish to focus on 3 not so usual suspects that I feel are unwittingly perpetuating this futile battle between carer and cared for, this draining exhausting and ultimately destructive tug of war, despite the best of intentions.

Firstly, conferences such as the UK Dementia Congress – even though they have always been a great forum for networking, and getting up to date. Congress usually opens with a great debate and this year was no exception but a debate without vote seemed to have carried on the next morning as the formula of the congress as with other such conferences continues to pit one side against the other – carer versus caree. It was particularly striking this year as up on the stage came a person to give their testimony of living with dementia followed by a carer telling her own ‘harrowing’ story. We really need to stop pitting one side of the caregiving relationship against the other. It was quite uncomfortable viewing.

Secondly, the tug of war continues through, another well-intentioned piece of work by the Carers’ trust in collaboration with the RCN. The triangle of care guide has been produced – ‘Carers included: a guide to best practice for dementia care’ It seeks to address elements where relatives might be excluded in some elements of health treatment. Unfortunately it fails to address at the same time the frequently unattended areas of exclusion experienced by the person with dementia within the triangle. Trevor Adams (2005) did some excellent work on dementia care triads, which mirror my own experiences when working with families where there is the danger of a professional taking sides, and where there is a power imbalance within the relationship frequently weighted against the person with dementia. The response I received from the report’s authors when sharing this was that a lot of work had gone into it over a long period of time and it focussed on carers because it was in collaboration with the Carers Trust. This is a very comprehensive document but only for one side of that care triangle. When I tell people that I work with people with dementia, I am often met with the response ‘It must be worse for the carer’. – In a dementia friendly world we must all challenge this statement. Without denying the difficulties (I have been a full time carer for a family member myself) we cannot compare the two. It’s difficult for both parties in different ways. Let’s not perpetuate the tug of war.

Moving away fro the tug of war idea for a moment I want to flag up a third area where I believe practical progress may well be hampered. The Prime Minister’s challenge and all the hype around calling for early or more timely diagnosis. There is clearly good intent here but what worries me is the easily rolled out mantra – ‘an earlier diagnosis means a faster access to support’. The implication here is that we have to wait for a diagnosis before we can get the right support. The push for early diagnosis is gathering momentum but the support that should go alongside that is not keeping pace. From my experience it would usually be 18 months to 2 years before a couple first saw their GP about one partner’s possible dementia. The recent national dementia map highlighted diagnosis rates across the country from initial referral to memory clinics – this could be several more months, possibly culminating in a report confirming diagnosis and a request to see the patient again in 6 months. So what does the support needed look like? And why do couples have to wait possibly 2 years before accessing any? In those two years antagonisms within the relationship remain unattended, gaps between crises get shorter, whilst the dementia insidiously drives a wedge between a family. I am reminded here of Princess Diana’s famous interview with Martin Bashir when she declared that there were 3 people in the marriage. Clearly I am not suggesting  that HRH CPB is the dementia – (far from it!) – but rather it is important to acknowledge all elements within a relationship! Diagnostic involvement should begin before diagnostic process is complete.

So what do we do to enable these 3 well-intentioned initiatives to really respond to the need now? They are all full of good intent which means they can redeem themselves! find out in my next post some of the solutions I propose…

Adams T and Gardiner P (2005) Communication and interaction within dementia care triads: Developing a theory for relationship-centred care. Dementia 4(2) 185-205.

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