Let’s continue to build the equilateral triangle of care.

Let’s continue to build the equilateral triangle of care
Below are some of the key standards set out in the triangle of care guide.. 
Carers and the essential role they play are identified
Staff are carer aware and are trained in carer engagement strategies
Defined posts responsible for carers are in place
A carer introduction to service and staff is available
A range of carer support services is available

They are all admirable but are only one side of the triangle – re-writing another side of the triangle for people with dementia is easy yet very challenging – essentially if you read through the document and replace ‘carer’ with ‘person with dementia’ you have a powerful, liberating document that truly recognises all sides of the care triad. Thus the document would propose that 
‘views and knowledge of the person with dementia are sought, shared used and regularly updated’
‘staff are dementia aware and are trained in dementia engagement strategies’
‘An introductory letter/orientation from the team or ward explaining the nature of the service provided and who to contact. An appointment with a named member of the team to discuss the individuals’ views and involvement’. ‘Information packs for people with dementia.’

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

So having pointed the finger at the UKDementia Congress and the Triangle of Care work for their unwitting perpetuation of the stress and burden model – an approach that goes nowhere to recognising the daily interdependence of all parties in a relationship – and having exposed the PM’s dementia Challenge as a movement that can actually DELAY the provision of real support, what do we do to enable these 3 well-intentioned initiatives to really respond to the need now?

1 A good start and one which I believe is in the pipeline is a dementia friendly conference, where we pull together rather than against each other. The care for carer approach seems to thrive off the stress and burden model of care and clearly implies a certain blame on the person with dementia. The advance of user groups around the UK is very encouraging and the work of the Dementia Engagement and Empowerment Project (DEEP) is producing a lot of excellent work in establishing a more consistent and formal representation of the voice of individuals living with dementia. Both sides here are interdependent and we must promote that message.
Testimonies like those jointly made by James and Maureen McKillop where difficulties are acknowledged and where common ground is also recognised need much more prominence. Such a conference can put out a message that really backs up the ‘Living well’ title of our national strategy and that puts an end to the language of ‘war, suffering, and fighting’ far too often associated with dementia in the popular press.

2 Let’s continue to build the equilateral triangle of care.
Below are some of the key standards set out in the triangle of care guide..
Carers and the essential role they play are identified
Staff are carer aware and are trained in carer engagement strategies
Defined posts responsible for carers are in place
A carer introduction to service and staff is available
A range of carer support services is available

They are all admirable but are only one side of the triangle – re-writing another side of the triangle for people with dementia is easy yet very challenging – essentially if you read through the document and replace ‘carer’ with ‘person with dementia’ you have a powerful, liberating document that truly recognises all sides of the care triad. Thus the document would propose that
‘views and knowledge of the person with dementia are sought, shared used and regularly updated’
‘staff are dementia aware and are trained in dementia engagement strategies’
‘An introductory letter/orientation from the team or ward explaining the nature of the service provided and who to contact. An appointment with a named member of the team to discuss the individuals’ views and involvement’. ‘Information packs for people with dementia.’

3 my point – Getting Along©
Finally and most importantly it is here that I propose how we can best fill what I call that peri-diagnostic gap of support. If we all see the antagonisms within a relationship (and we do – care workers report this to me all the time) then we must respond otherwise crisis follows crisis and gaps between respite get shorter.

The Getting Along© programme is a series of 4 or 5 semi structured sessions with the couple together (not separately) that acknowledge the impact of a dementia; the history of the relationship; how individuals see themselves and the issue of control and power in that relationship; and at specific difficulties. The principal of interviewing couples together is to really gauge the dynamic and tensions within a relationship; and to strive to redress an all too frequent des-equilibrium within the relationship. It concludes with a group session of up to 4 couples who have been on the Getting Along© programme which itself can become a self sustaining inclusive peer support group. It enables couples to put down the rope and gets people together safely and gratuitously. It levels the playing field to give both parties an equal voice and it can equip front line workers with the wherewithal to address both sides of the caregiving relationship – it is what will even up the triangle of care and what will equip those people to go out and access what could well be a dementia friendly community outside their front door.

What might be the cost for such a highly skilled intervention? Well that depends if we want to have highly qualified expensive specialists involved in facilitating all these sessions? Ideally would we not want an Admiral nurse to be leading on something like this? – perhaps, but if we wait for one of them (fantastic as they are) we will have missed the boat. There are not enough of them and they are all too busy to take on another project. I nearly entitled this article ‘What’s the point of Admiral nurses?’ as an attention grabber – not in any derogatory sense but just in recognition of their scarcity. Getting Along© is not necessarily adding another layer of contact with people but rather enhancing the contact we already provide with many families. Work I have done with front line staff regardless of qualification has frequently unearthed some real diamonds and this programme has the same potential. Facilitators for such work can come from amongst those on the front line and very soon a sustainable model can be created with the benefits of a more highly skilled and motivated workforce, able to see beyond the confines of a list of tasks to their own part in the movement towards dementia friendly communities.

We need to act now and clinical commissioning groups need to look at how they might wish to plug this peri-diagnostic gap, to pre-empt relationship breakdown, to equip front line staff and to delay admission to long term care. Local authorities too need to invest now in more community-based services for people with dementia and their families. In my own City of York the local authority currently has around 200 beds for people with a dementia in long term care settings. Local statistics report a prevalence of around 12,000 people in York with a dementia. Investment needs to match that ratio.

In conclusion I am convinced we can fill the current no-mans-land of peri-diagnostic support through diagnostic INVOLVEMENT in the form of Getting Along© long before the diagnostic process is complete; and that at the same time we can address the current irony that most care is delivered by the least qualified staff – through equipping those front line staff with key skills in delivering real and practical support without the long wait for the referral to the specialist practitioner.

For more information on Getting Along© and the training programme for community-based staff that goes alongside please contact dementiafriendly@btinternet.com

References:

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.

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

Carers’ Trust and RCN (2013)The Triangle of Care Carers Included: A Guide to Best Practice for Dementia Care Available at http://www.rcn.org.uk/__data/assets/pdf_file/0009/549063/Triangle_of_Care_-_Carers_Included_Sept_2013.pdf (Accessed 13 January 2014)

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) 2

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.

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