Getting Along – the blog of the pilot – Filling the peri-diagnostic gap

Thanks to an Awards for All grant via the Big Lottery and with the backing of Innovations in Dementia, of whom I am proud to be an associate, last year I carried out a project I have been wanting to deliver for a decade. This post will cover the rationale, delivery and findings of that work. It may challenge and may be full of opinion. I hope so. That is my aim

The big push for earlier diagnosis and higher rates of diagnosis is good if it were to be matched by support services alongside that. At this year’s Dementia Congress we heard eloquently and passionately from two men who both said that receiving a diagnosis was like being pushed off a cliff, because there was just nothing they could see to help them following moths of tests and assessments. What’s more, what has always struck me is that by the time someone has gone to the GP for the first time, probably about 18 months has passed by where people have being thinking ‘what’s happening to me/us?’ Add a further 3-6 months going through the diagnostic process and you have up to 2 years without support.

I have always been convinced that diagnostic involvement can begin long before the diagnostic process is complete. Getting Along was something that I felt could help fill that peri-diagnostic gap.

For years I would notice domestic strife between families and couples I’d visit. ‘Was it all a sham?’ asked one gentleman, whose wife had dementia, about his marriage of over 40 years. I was reminded of that famous interview that Princess Diana gave to Martin Basheer all those years ago when she said, ‘There are 3 people in this marriage’. Far be it from me to equate Camilla Parker Bowles (as was) with dementia! The presence of a third party within a relationship, driving a wedge between the couple, is what I witnessed time and again amongst those I was visiting. This third party was something that I felt needed to be acknowledged – Dementia was in many cases the ‘Elephant in the room’.

Surely I am not the only front line worker to witness the insidious nature of dementia being made manifest through domestic strife, point scoring, power struggles, and niggling arguments. How sad and frustrating to witness. How draining it appeared to live with! Another visual comparison for me was the domestic tug of war with both parties pulling in opposite directions when trying to deal with the same problem. What I would see then were frequent antagonisms within families and particularly between couples. What worried me was that in my work I was not attending them. I was visiting to evaluate my service, perhaps tick a box; or to help with filling out benefit forms. I needed to respond – we all do! Couples were desperate for someone to help with this.

Indeed I looked at the agenda of families and couples in their encounter with services and looked at the mismatch in agendas (including my own as mentioned above). Sweeping statements they may be, but the following ring true and have been mentioned to me by many couples.

The first meet with the GP, we want strategies – We get ‘Who’s the PM?’ – It’s fine to test but we must get to the point where the GP can say, ‘We’ll send you for tests but goodness me, your relationship must be under some strain’

The first meeting with adult social care services, we want practical services – We get ‘How much money do you have?’ – Those of us in the know are aware that social services are means tested but more often than not after a long meeting, if a couple is left with a financial assessment form, that’s all they may remember from that meeting.

The diagnostic process complete, we want learning and understanding – We get ‘see you in 6 months’. – another sweeping statement perhaps but the feeling of being left scared and on a cliff edge is very real for many (see above).

Another thing that is a driver of Getting Along is the predominance of the tea and sympathy approach within services. Who wouldn’t want to put the kettle on and listen to heartfelt words such as ‘he’s not the man I married’ or ‘she keeps on repeating the same things’? That’s what a concerned neighbour would do but if, as professionals, we stop there and sympathise with the carer we are colluding and perpetuating the stress and burden model which has prevailed for decades. The historical predominance of the ‘care for carer’ approach and the eloquence of such powerful carer movements has tended (unintentionally or otherwise) to imply that blame for the stress lies at the feet of the person with dementia. I don’t remember people getting dementia deliberately… So as professionals we should go further and acknowledge too the feelings of the other party in this caregiving/receiving relationship. It’s not just one partner who needs to offload!

So Getting Along seeks to level the playing field, not just within the relationship, enabling both sides to have a say but seeking an equity of access to support within services that is unbiased and not laden with blame. Currently we treat both sides in isolation of each other and their unique set of problems. Most services tend to separate people. We all need space, but if we do not seek to equip couples to live better together with dementia we are failing. However many groups, day services, meetings people attend a week, the vast majority of time is spent at home together where people could be rubbing each other up the wrong way and falling into the many traps that dementia sets for the uninitiated.

So if you want to watch the Getting Along film to see what we did you can find it here on the Innovations in Dementia website:

http://www.innovationsindementia.org.uk/videos_gettingalong.htm

So what did we find? Keith and Rita said during evaluation, ‘To equip couples/families to live better with the presence of dementia – well you’ve ticked that box!’

‘Most services are just social. They don’t help you back at home where you spend most of your time’

In our first session Keith mentioned that, ‘she needs to accept she has dementia’. On our last session he concluded ‘I realise it’s me who has to accept that she has dementia’

With an aim to enable professionals to recognise and respond to both sides of the caregiving relationship, one consultant old age psychiatrist said, having met a couple just after they had completed the programme, ‘this couple were visibly more relaxed since the programme, than when I last saw them’

Another couple asked, ‘Why didn’t people tell us all this at the start? Everyone should have this’

Other quotes from participants are:

‘I would say real shouting matches have virtually gone now thanks to the Getting Along conversations’

‘I didn’t realise how he felt…No-one has ever spoken with us like this before’

When one carer said he couldn’t understand why his wife would ‘blow her top’ occasionally she said, ‘I have to do that, otherwise I’m nobody.’ – Wow, powerful stuff.

I believe it’s time for a new practical approach around the time of diagnosis. Getting Along can fill that ‘peri-diagnostic’ gap in services; and it matches the agenda of people supposedly at the heart of services. Though topics are sometimes awkward, I have found that people want and need to talk, no matter how impaired.

To implement a formal Getting Along programme or to adopt a Getting Along approach I firmly believe it should not be kept in the realms of the ‘already busy’. Those with most contact often have the least qualification We have a huge untapped resource amongst front line workers who could use a great deal of their unrecognised skills with a little encouragement, confidence and training.

To implement this or to make this transition in service approach might be seen as costly. I disagree. I believe the cost is negligible.

Community nurses, Community nursing assistants, Care managers, Occupational Therapists, Care support teams – challenge and adapt current practice, invest in training, create a central referral spot for this type of work.. Domiciliary care workers – grasp the nettle and broach topics

Most of the costs of the £9,000 grant went on:

  • My time – you already have salaried staff.
  • Report writing – was specific for this project so would not figure
  • Mileage – services already have the contact and travel costs.
  • Home visits and write up – also currently take place. This is just about enhancing the quality of that contact
  • The launch event – was particular to this project
  • Printing and stationery – will already be part of your current administration budget

So Getting Along is about a change in approach. As services already have a great deal of contact with couples and families, it is about enhancing the quality of that contact. As training is already part of staff development it will be a case of enhancing that training.

Want to know more about Getting Along?

Practical sessions for front line community-based staff to promote a much more relationship-centred approach

Facilitator workshops for key staff to deliver Getting Along programmes

Prefer an in-house workshop more tailored to the needs of your own locality? Then get in touch with Damian at damian@innovationsindementia.org.uk

Thank you

 

Damian Murphy .

 

 

 

 

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