Filling the peri-diagnostioc gap –BLOG 1 of 3 Time to be Getting Along©

Over the last 15 years I have frequently seen and reported on the impact of dementia upon a family relationship. I still find the same problems today – people questioning the validity of decades of marriage; ill-equipped families on the brink of destruction; local old age psychiatry consultants frustrated by lack of practical services that might address family relationships; and a local manager in adult social care reporting the frustrations of his community workers listening to the same tales of couples at each other’ throats and seeing their relationship only in terms of the dementia. I listen to front line workers – home care workers, respite workers, saying how they see common elements of Kitwood’s list of personal detractions, – banishment, ignoring, infantilisation, disempowerment (Kitwood 1997) yet saying at the same time that they don’t know how to respond to it (either because their task is more ‘important’ or because they may feel awkward about broaching something however obvious an issue or because of the self-limiting ‘I’m only a carer’).

In light of this, this blog will be posted in 3 digestible parts. IN this first blog I will look at some testimonies, reports, or political drivers that have occurred over the last 9 years since my first exploratory pilot on a relationship-centred approach. Secondly I will look briefly at 3 specific issues that unwittingly conspire against progress in providing real support that addresses both sides of the care-giving relationship. Thirdly I will re-visit each of these areas to suggest potential ways forward.

In 2005 initial findings of my work were that people want to talk, that people recognise the tensions in a relationship and are keen for handy hints and top tips; and that they are desperate to put the relationship into context. In 2010 I listened to James and Maureen McKillop give testimony about their relationship–‘if nothing comes of this appointment with the neurologist then I am leaving you and taking the kids’, Maureen had said. When they realised there was actually an illness coming between them they reported a 2nd honeymoon and a family reunited. It reminded me of the message from John Zeisel (2010) that pain and loss are inevitable but suffering is an option.

In 2010 I attended the Alzheimer’s Europe conference in Luxembourg. Dieter Ferring – professor at University of Luxembourg spoke fascinatingly about stages of relationship – or the ‘relationship trajectory’ as he called it.
Family relationships could range from the amicable – to – ambivalence –to – disharmony – and to – detachment.
It made me realise that although we often talk about the stages of dementia, we must also talk at the same time about responding to the stages of relationship within families. – This raises obvious questions about how we might be able to do that and what the skills of our front line workforce need to be. It also gives us clues (as yet un heeded) as to what exactly a ‘skilled and effective workforce’ recognised in all the national dementia strategies might actually look like.

A glance at the latest edition of Journal of Dementia Care (Jan/Feb 2014) reveals a report on the ‘Carers; Call to Action’ launched by the Dementia Action Alliance. In its coverage of the G8 summit we see that a full session focussed on ‘improving life and care for people affected by dementia and their carers’. Thirdly, the report of the excellent Tom Kitwood memorial lecture by Professor Brendan McCormack  at the UK Dementia Congress last November mentioned how he is looking to explore ‘healthful relationships and human flourishing’

So there are many calls for support for families yet what we provide as a nation/movement (call it what you will) is disjointed and often counter-productive and at worst divisive. I am reminded of the frequent tug of war I would witness within families – where a person with dementia might be making every effort to mask their condition, pushing their partner away, whilst at the same time the partner would be treading on eggshells, not wanting to mention problems, but needing to take over. In this situation both parties were working strenuously pulling the rope that was the dementia – unfortunately they were both on opposite ends of the rope and crisis would quickly follow crisis without any progress. This ‘tug of war is being played out on a broader stage too. Many areas hold back progression of new approaches to care and articles abound on the usual suspects such as old culture attitudes; the continued adoption of an asylum model of care (lots of people under one roof); the compartmentalisation of care, lack of money, lack of time, lack of staff. However, in my next blog I wish to focus on 3 not so usual suspects that I feel are unwittingly perpetuating this futile battle, despite the best of intentions. – the UK Dementia Congress; the new Triangle of care and the Prime Minister’s Challenge … stay tuned

References:

Alzheimer Europe Conference Luxembourg (2010) – Facing dementia together: People with dementia and their carers

Dieter Ferring (Luxembourg): Who cares for me? – Trends in family caregiving in European countries available at http://www.youtube.com/watch?v=BlfNyxnXNr8

Kitwood (1997) Dementia Reconsidered: the person comes first. Buckingham: Open University Press

Murphy D. (2006) Relationship-centred work with couples. Journal of Dementia Care 14(1) 35-37

Zeisel J (2010) Hearing the cry ‘I’m still here ‘ in the midst of grief and loss. Journal of Dementia Care 18 (2) 20-22

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