The Magic of Minds and Voices

 

There was something magical about the York Minds and Voices get together yesterday. Wendy marvelled at how we have all blossomed over time and she summed up some of its magic in her blog from today.

I am filled with a real sense of wellbeing as I flash back to dancing with Liz as she came in that morning; and to the champagne moment of Rita’s face appearing at the door having been unable to attend  for several months. I am still marvelling at the depth of reflection, the campaigning zeal and the work we produced today without losing that sense of celebration every time this group meets. I’d argue in fact that it is precisely because of that sense of celebration in the room that we produced so much together.

It didn’t feel like work. Like Wendy, I too was struck by the maturity of the group and the powerful sense of belonging and the freedom that it brings to its members – Or rather I should refer to the belonging and freedom that everybody engenders within the group. Freedom to be quiet, to talk, to contribute, to be different, to express ourselves in whatever way we wished. There was, as there should be, a real blend of serious discussion, activism, laughter, dance, tea, coffee and a good spread for lunch.

We not only shared and decided on next steps for our Rights work on transport, we also planned a 15-20 minute slot we have been given on the agenda of the upcoming York Dementia Action Alliance (on the not insignificant topic of inequalities of opportunity and its possible causes including poverty, lack of knowledge, and confidence, and the values of others). All before lunch!!

But what really got me thinking was the short session after lunch when we were to continue discussions on the creation together of a course for people newly diagnosed with dementia. This is a course which members of Minds and Voices will be designing, developing and delivering as course tutors.

This was going to be quite hard thing to do or so I thought. I casually asked what sort of message would members like to share to people newly diagnosed – well there followed a barrage of powerfully assertive statements delivered with a real sense of urgency.

Age is just a number’ ‘It’s not the end of life’ ‘It’s the start of something’ ‘I’ve had a breath of life’ ‘I’m fully occupied’ ‘I’m never in. I can’t do my housework’

 We swiftly moved on to common problems without prompting and there followed a full pros and cons debate around driving by Eddy and Paul.  Acclimatising to change and a range of top tips were then suggested.

Liz brought up the issue of other people and the attitudes of other people, “Someone said to me ‘You can’t have dementia because I see you going around town on your own’. People think we’re ga ga”.

As ever the issue of relationships with those nearest us came up and the importance of seeking to equip those newly diagnosed and their supporters with simple strategies to avoid many of the traps that dementia sets.

I was astounded that within about 5 minutes (for that’s all it was) we gathered a comprehensive range of content and identified tutors for various elements of what will be the final programme.

Producing stuff together has become a bit of a ‘thing’ recently. The magic of this ‘co-production’ came not through the waving of a wand but through the investment of two years of the building of confidence and relationships within this peer support setting. This is real co-production not tokenistic involvement. It takes time, building of good relationships, shared experiences, and the subsequent growth in confidence of belonging to a group of peers to produce the magic. Indeed, Wendy, how we have all blossomed.

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Getting Along – Meat on the bones of Policy Demands!

Getting Along – Looking at relationships in dementia care

The Getting Along programme addresses the subject of relationships between couples where one partner has been diagnosed with a dementia. One of the earliest difficulties that many people report is the amount of silly arguments (or even blazing rows) that tend to happen. These can be really draining, cause a lot of tension and damage relationships.

Often a lot of the difficulties are actually caused by the presence of a dementia and they are nobody’s fault, but when you have perhaps lived with each other for decades it must be hard to get used to.

Getting Along seeks to address the change in the dynamic of any relationship affected by the presence of a dementia, so is not just for couples.

You should have done this with me and my daughter …, because I don’t think she understands my dementia’. Participant

We made a short film of the pilot you can see here. http://www.innovationsindementia.org.uk/videos_gettingalong.htm

 In England, Prime Minister’s Challenge on Dementia calls for.

Every person diagnosed with dementia having meaningful care following their diagnosis.’

The draft Welsh dementia strategy recognises the impact of dementia on the wider family unit. ‘Many individuals have told us that the diagnosis of dementia can make them feel excluded … even within their family’.

In Scotland too, with a guarantee of 1 year of post diagnostic support available for all recently diagnosed, Getting Along programmes can be a practical help at a time when, although physically well, people might be falling into the many traps that dementia sets within a relationship.

‘I would say our arguments have reduced by about 90% since we did this programme’

For more information contact me, Damian Murphy, at Innovations in Dementia CIC

M:  07927 405 854 E-mail damian@innovationsindementia.org.uk

Website: www.innovationsindementia.org.uk

 

Exactly what we offer…

The factory production line processing of staff through tedious workbooks to satisfy regulations and inspectorates – and insurance companies! – needs to be challenged. It still persists, unfortunately, often dressed up in a ‘professional looking’ veneer. Learning ‘programmes’ are often chosen because they fit into an in-house monitoring system where each learner can be tracked and ticked off. But we at Innovations in Dementia have been asking ourselves for sometime now

  • Who decides the learning needs?
  • Who identifies the learning needs of any group of people working and living with people with dementia?
  • Who should set the agenda of what people need to know and understand?

There is a lot of really good information and training resources out there with a sound value base, yet the growth of seeing Dementia as a rights issue has led to a growing unease at the absence of people with dementia being involved in training. There are more courses now introducing an element of the personal testimony people with dementia. They often prove very powerful from feedback we receive. If these moments overshadow the rest of the training then why stop there?

The answer to this question and those above it lies with people with dementia.  

If training messages encourage learners to focus on and take the led from people with dementia, then courses themselves should be designed together with people with dementia. Courses should be developed together with people with dementia and courses should be delivered together with people with dementia.

I remember running a small seminar type discussion around relationships. One man with dementia mentioned to the group how he knew everything was always his fault. Immediately another lady with dementia stood up and assertively pointed out ‘No, we MUST be allowed to make mistakes!’ I could have given a similar message which would not have had half of the impact as it did, coming from a lady living a similar experience. What was also most striking in that group was that this lady had recently been admitted to 24 hour long term care. On paper she was the most severely impaired of all present yet she made the most telling contribution of the day

Who decides the learning needs? Who identifies the learning needs of any group of people working and living with people with dementia?

Who should set the agenda of what people need to know and understand? Who should decide whether someone is putting learning into practice?

The rationale for learning and the setting of the  agenda for learning must lie with people with dementia themselves.

The problem is identified by people living with dementia – be it lack of accessibility, the use of language, complexity of written materials and signage, way-finding difficulties, treatment and communication, personal detractions or the building on good experiences, a lack of understanding of dementia, prejudice, relationship difficulties. – and it is identified not just via the spoken and written word of those individuals still able to express themselves eloquently, but also through the observed actions, expressions of emotion, and experiences of those less able to do so.

Through focussed work, close observation and interaction, the solution is developed and delivered by and with people living with dementia

People with dementia, regardless of perceived limitations or level of care needs , can and should be involved in the design, development and delivery of training. At Innovations in Dementia that is exactly what we offer.

For more information contact Damian@innovationsindementia.org.uk

Meaningful Psychological interventions

Last week the British Psychological Society (BPS) Dementia Advisory Group launched a new report, ‘Psychological dimensions of dementia:  Putting the person at the centre of care’  you can find it here. http://beta.bps.org.uk/news-and-policy/psychological-dimensions-dementia-putting-person-centre-care .

Peter Kinderman, current President of the BPS, launched the paper at the Welsh Senedd in Cardiff and I was fortunate enough to be present. He  mentioned how the report aims to shine a ‘light on how psychology (and psychologists) can help to promote wellbeing and increase the likelihood of people with dementia living full lives in their local communities’

Well it certainly does that and puts across a strong case for psychological involvement throughout the course of a person’s experience of living with dementia. It left me with the question: ‘Why then is it not the case that all dementia services are not routinely led by Psychology teams?‘ In fact the subsequent discussion at the launch centred around the limited resources on the ground and a real sense of insecurity amongst psychologists around the UK.   – So incongruent with the powerful content of this report.

A few reflections and questions on the report content.

I love the phrase used, ‘psychological support must be based on a formulation of individual needs and circumstances’, but I have to ask how confident are people of assessment becoming a practical reality?

Psychologists are best positioned to carry out the necessary psychological approaches.

… but how accessible are they? How widespread is the regular and meaningful input of psychology in the service response to dementia? ‘Not very’ is the answer to that which is why there is a need to properly equip both front line staff and families themselves to carry a lot of this work out. It’s like with the situation of Admiral Nurses. Less than 200 nationwide means a need for more innovative approaches adopted across disciplines.

Who else is in such a good position? Throughout the UK dementia support worker roles in various forms are in ideal positions to adopt and promote new approaches. They must, however, guard against being little more than signposts – such a disappointment! (‘Go with me, please. Don’t just point me somewhere else’).  I feel there is a huge untapped workforce on the front line. Historically those with most contact with people with dementia are usually the least qualified. Let’s equip the front line!

The report advocates recovery-based approaches. Absolutely. But how widely understood is this across services and to what extent is the definition of recovery, when talking about dementia, framed in terms of recovery of role, status, identity and place for all those working within dementia care services? If it’s not adopted by all it will be undermined so easily at any moment by outmoded old culture attitudes.  – a brilliant blog on the meaning of recovery is here http://dementiawithoutwalls.org.uk/2017/01/continuing-to-be-me-recovering-a-life-with-a-diagnosis-of-dementia/

The report acknowledges the impact of dementia upon whole family networks but perhaps is not explicit enough in identifying specific ways to work with both sides of the caregiving relationship together. Traditionally we have focussed on the person with dementia and the carer and their own particular set of difficulties in splendid isolation of each other. To what extent are services able to address the interdependence?

So we need to equip families as a whole to live well and better with the presence of a dementia. Important as we all may be, the reality is that most people spend their time NOT in our services – but under each other’s feet, falling into the many traps that dementia sets within the dynamic of those close relationships.

If current older peoples service models were adopted within children’s services, there’d be a national outcry. Imagine – ‘Send your child away for 2 weeks and have a break. We will do nothing to equip you as a family to get on better in the meantime’. Why should we tolerate such an approach in older people’s care? Ageism is the only conclusion I can come to.

I have posed several questions along the way, not as hypothetical questions, but because I feel that the relationship-centred Getting Along approach can go a long way to filling what is often a fairly sparsely populated post diagnostic gap. Indeed Getting Along can form part of diagnostic involvement long before the diagnostic process is complete (or even begun!). For more information on Getting Along; the adoption of a system wide Getting Along approach; and how Getting Along matches key elements of national policy, then you can contact me. You can see the film we made of the pilot of Getting Along at http://www.innovationsindementia.org.uk/videos_gettingalong.htm

In the meantime

I believe Psychologists should blow their trumpet with a lot more conviction and wave this report around until we can get to the point where non-psycho-social approaches are seen as the quaint alternative rather than the norm.

Damian Murphy at Innovations in Dementia CIC M:  07927 405 854 E-mail damian@innovationsindementia.org.uk  Website: www.innovationsindementia.org.uk