Older Mind Matters

Conferences and conversations: making space for learning

Apologies for the recent period of silence. I have been inspired this week to share recent experiences and thoughts. I went to a conference organised by the European Society on Family Relations (ESFR) in early September. I had thought, looking back when I first got home, that I had not gained from it as much as I had hoped, and had not moved my ideas on. But maybe it has helped to develop my ideas about relationships and dementia, an area I have been reflecting on and reading about recently. What has helped even more, has been recent conversations with people with dementia in which I have been privileged to hear about their thoughts and experiences of relationship changes in the context of dementia. I am humbled by the perceptiveness and willingness to share of the people I have met. How often do we give people with dementia the opportunity and time to develop and voice their thoughts in and about dementia services? What support do we give them to meet together and process their experiences? (Have you come across the model of memory cafés where people with dementia meet together as a group? Is it available where you work/ live?) Are we unknowingly part of Tom Kitwood’s malignant social psychology, in disempowering and disabling people with dementia? (Note: Tom Kitwood used the term malignant social psychology to describe the way in which environment, interactions, and communications can diminish the "personhood" of people with dementia: we might have good intentions but still disempower and disable people. My copy of Dementia Reconsidered is well worn and much valued and it’s still listed on amazon.)

I have also had some long drives this week and, another thing I realized, while stuck in traffic on the M6, is that long drives give me an opportunity to reflect. Reflection is often crowded out of my life by everyday tasks and the email mountain: I must have been bursting with ideas when I worked in Wolverhampton with all that driving! I know that my inspirations and enthusiasms develop in conversation with others, but perhaps I don’t always recognize how important they are to me. I am a member of ASPENS, a network of people in the Association of Family Therapy and Systemic Practice, who share an interest in, and who want to promote, family and systemic psychotherapies in the independent and voluntary sectors. Online through ASPENS I met a colleague who collaborated with me on a review of family therapy and dementia (recently published online by International Psychogeriatrics) and we hope to have a continuing creative connection. Who knows where that might lead? I think it’s unwise to know where you’re going, as the knowing might eliminate a lot of very interesting possibilities…

So some questions for the reader:

How do you make space to develop your thoughts and carry on learning?

Who are the people that connect with and inspire you?

If you work in the care/ support of people with dementia, how do you make space for them to voice their wishes and thoughts?

4 comments (Add your own)

1. Dave Jolley wrote:
Yes – well – It is unusual to find that a conference is empty – If the formal stuff is not so good, there are the people to meet. Getting there and back takes time – if the travelling is by train there is chance to meet more people or simply muse on this and that – I rarely read too much on journey’s these days.

My most recent conference was the International Long-term Care Policy Network at LSE – Only for one day (cost too much for more even though we were presenting!). Travel to that made me pleased to be old: Return fare from Stockport to Euston quoted at £340 for an adult at the times I needed to travel - £54 for me with my senior Citizen’s Rail Card – Get old and get a rail-card
Fascinating to hear, particularly, an account from France of the growth, spread and decline of innovative services; and then from CAMHS the development, strengths, weaknesses and best patterns of specialist/generic services in dealing with vulnerable people. This latter so similar to the analysis of specialist/non-specialist services for older people with dementia which PSSRU in Manchester undertook quite recently. The French paper related well to our Gnosall initiative and current interpretation on a wider setting in Staffordshire and Shropshire and in other places.
In a way this links with your observations on Family Therapy for people with dementia and the encouragement to help people with dementia speak to us and to others about their feelings and thoughts on activities, services and such. This is, indeed, all about people being respected and valued as PEOPLE. One of the problems with the current enthusiasm for DIAGNOSIS, is the people can so easily become CASES – Then to be brought together with other examples of the same diagnostic group and encouraged to behave as if they were people!
Within families and ordinary life people are people – some are very capable, some need understanding and help. Whilst it is important to make available some settings where people with dementia and their families can come together with others with similar problems and challenges, it is in their day-to-day living that most find their greatest pleasure and reward. Not everyone, not even the majority, actually want to be ghettoed away in a dementia world
Off to the Labour Party Conference session on dementia this lunch time: I wonder what we’ll think of that!

Mon, September 22, 2014 @ 8:48 AM

2. Victoria Sharman wrote:
I used to attend/volunteer something similar memory cafe organised by the Alzheimer's Society that included people with dementia and their carers but this was 13 miles from my local area. There is a dementia centre being built local to me and due to open in December so I am interested in finding out if they would consider a memory cafe.

A space and time to reflect is invaluable and I try to this as often as I can especially during break times.

Early this month, I attended a two day event titled "Life is but a systemic stage" and enjoyed in participating in "Action, Method and Technique". What I enjoyed most was practising how to make my ideas visible through action in working with dementia issues. Brief discussions on train journey with fellow participants helped to develop my ideas further.

Tue, September 23, 2014 @ 2:52 PM

3. Michael Hurt wrote:
I have been thinking about the points raised in this since the original post. I have very mixed feelings about conferences as the same old people tend to appear at them. I tend to only have time for the ones I speak at nowdays but benefit from hearing everyone else at the same time. I like the journey too but often spend it practicing my timing. Last week it was a dementia CQUIN conference and unusually the day passed very quickly because all of the presentations were interesting. The debate in the workshops was both informative and gave one a sense of hope that there are lots of us who are both interested and doing. For my part, I now include a ‘notes to self’ slide in the hope of influencing others in a similar position: "speak to people", "do not tick boxes" "do not sail with the prevailing wind" etc etc

We commission seven free dementia cafes which are extremely popular with both people with dementia and carers/family. I was sent a letter from a carer last week explaining the difference the cafes have made to their lives. For example, the carer said that she now realises that it isn't important that her husband cannot remember what he did at the cafe but he remembers and repeats what a good time he had. She went on to describe that as a result of the people the cafe organisers invite to the cafe (the decision of the attendees), she had learned about other forms of support and has benefitted from them when previously she did not know that they existed. Wellbeing scores have improved significantly and the cafes act as a very useful source of engagement for me as a commissioner. The model has been so popular that others; some of them carers themselves, have opened their own cafes. Our largest Asda store, who is now the country's lead for trying out dementia friendly signs etc is looking to open their own dementia cafe and the acute hospital are doing the same with commissioner support.

The model has been so well received that we are trying a version for older people who have experienced depression. We are commissioning one cafe to start with but supporting two other organisations to get funding to adopt the same model.

Diagnosis remains an issue in that there is pressure to raise the rate in line with the national ambition. To be fair, my experience is that most people want to know what is wrong with them and so do their loved ones. Many of the people I used to assess were concerned they had a tumour and none of them until diagnosis had the opportunity to apply for Attendance Allowance, receive support on how to make the necessary adjustments to help themselves as much as possible, plan for the future, manage long term conditions better or receive support from others. These doors have to be opened with a diagnosis but then what?

I have been involved with perhaps 6 or 7 diagnostic clinics over the years and they serve a purpose. However my experience is that people gain more benefit from being involved in the voluntary and third sector for their long term support and prefer this to doctors and nurses. This is why we have supported many organisations with quality funds to develop such support services and will be shortly commissioning six personal assistants for dementia who will work with people from diagnosis. They will offer practical help, support to plan for the future and signpost/support people to access other forms of long-term support. They will be free of charge and will work with people who would not otherwise have qualified for services.

I will no doubt think of another comment in the hour it takes me to drive to and from work!

Thu, September 25, 2014 @ 12:31 PM

4. Julie Grainger wrote:
Bit late making a comment I know but as Susan knows we run a very successful Dementia Cafe (Alz Cafe) in Wolverhampton. We continue to thrive - we have pulled away completely from the Trust and are self funding and 'staffed' by volunteers. Attendees have made it very clear what they want from the Cafe and love singing and dancing evenings (their choice). They express the desire for escapism from dementia for the duration of the Cafe and whilst we don't ignore dementia we certainly don't dwell upon it either. Folks have created their own networks outside of the Cafe which have proved so very valuable. We have an attendance of between 50 to 60 people each month - it really is wonderful and humbling to see couples dancing together - some of whom have told us that they have not done this for years. Long may it continue.

Thu, October 16, 2014 @ 10:06 PM

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