Now here’s a Manifesto

It’s election time again here in the UK.  Two years ago, at the time of the last election here, I was privileged to co-facilitate a course for people recently diagnosed with a dementia.

Our group produced some powerful statements.  What better time, then, to share the Manifesto they produced below.

Our statements, our learning – a manifesto

Statements:

We want to challenge outdated views of dementia

We are very important.

Many people can learn from us and from our experiences.

We have so much still to offer

We’re still us

Our upbringing and previous experiences affect how we live today more than dementia

We don’t feel old (some of us aren’t!), we feel okay!

We’ve all had a knock to our confidence

We have a right to share how we feel, just as carers do

Dementia friendly is about being friendly, not knocking our confidence or exposing us

Laughter is a good thing, we can still do that

Living well and engaged is still possible with the right support because it’s hard being on your own a lot

I’m so much more than a person with dementia

We are comfortable talking about death

 

Our knowledge of dementia

Dementia is about losing nerve cells. But not all at once – so we just get on with today.

If I like something or fancy someone, I’ll definitely remember! Yes – our emotions remain very much intact and so we remember things of emotional importance.

We know we will more than likely die with dementia than die of dementia, so life goes on!

We might forget your name, but there’s no denying the love we have for you.

An upside – that feeling when you find a dress you forgot you bought!

If we repeat ourselves – so what?!

 

What we ask of you

Don’t highlight our mistakes, don’t rub it in

Help us stay connected

At diagnosis we got little or no information – we want more in-depth information to hand on diagnosis

We want the right to find out more about our dementia

Don’t see repetition as a problem

Don’t see repetition as a problem

Don’t see repetition as a problem

 

So, what to do?

Concise and powerful, there is a lot in there about proper, not tokenistic, inclusion of people with dementia; about a need to focus on equipping people to live well with dementia; and about the huge benefits of ongoing peer support. DEEP, the UK network of Dementia Voices, is now a mushrooming network of over 80 such groups UK wide. Indeed, with Minds and Voices, the DEEP group here in YORK, we are in the process of co-producing another course for people recently diagnosed. this time however the course is being co-designed, developed and delivered by members of Minds and Voices who will be tutors on the course. The course will run in September/October this year.

 

So, commissioners, take note. This manifesto gives real indicators as to how services and policy makers could respond. You maybe can’t afford to add extra stuff to your offer, but you can revisit how you operate to  strike a better balance on the one hand between what is often a tired and outdated service offer seeking predominantly to relieve carers, and on the other hand a need to enhance the quality of life of individuals who still have a RIGHT to voice, choice, control and identity within their relationships and their communities.

At Innovations in Dementia, decades of collective experience and a decade of continued engagement mean we have developed a very clear idea of what constitutes a comprehensive inclusive service.

It’s time for a new approach.

Let’s revisit the meanings of day care; respite (for whom?); long-term care based on the asylums (lots of people under one roof); and  recovery’.

Dementia-friendly communities will be redundant without dementia-friendly and dementia-supportive relationships.

Let’s equip the front line, not with tedious work books, but with a range of practical, emotional and psychological skills.

There are already some fantastic practice examples out there:

As mentioned, the UK network of Dementia voices (DEEP) – already changing lives and a resource to lead on policy change, service delivery and dementia learning.

Getting Along– a new programme from Innovations in Dementia addressing both sides of the caregiving relationship

Super Carers’ high quality tailored care

Shared Lives – where people live together in welcoming normalised environments

The Debenham project – a superb community-led initiative in Suffolk

The TRIO service from PSS in North Wales.

 

Perhaps it’s time to light a fire under the whole set up. We can help you rebuild.

Damian@myid.org.uk

 

 

 

Places still available- FOR A NEW APPROACH TO DEMENTIA CARE – GETTING ALONG

Places are still available for ‘Getting Along  – Time for a new approach to dementia care’ on Thursday 25th May 2017 at Twickenham Training Centre.

This one-day course will be of special interest to anybody from any sector working in or commissioning services for people with dementia and their carers in a community setting.

It aims to help participants:

  • Address BOTH sides of the care-giving relationship,
  • Adopt strategies to equip people with dementia and their families to live well and better with dementia,
  • Influence the creation of a service wide relationship-centred approach.

For more information on Getting Along and on the work and impact to date, see my earlier blog which sets Getting Along in a policy context.

Within the current climate there is a real imperative to:

  • revisit how we operate  – by taking the lead from people with dementia and their supporters to avoid the many pitfalls and traps that dementa sets within close relationships.
  • adopt a rights-based approach in levelling  the playing field in terms of voice, choice, control and identity within relationships.
  • Match the call for increased diagnosis rates with practical support in and around the time of diagnosis. 

Getting Along does all these. Book early for your place. Details below

Date:             Thursday 25th May 2017

Time:             9.30 am until 4pm

Venue:          Twickenham Training Centre, 53 Grimwood Road,  Twickenham TW1 1BY

Cost:             £125.00 inc VAT per person  including handouts, lunch and refreshments

 PLACES LIMITED ~ to register and for any more information contact course facilitator: Damian Murphy (damian@myid.org.uk  / 07927 405854)

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.

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

 

DEMENTIA-FRIENDLY RELATIONSHIPS

Earlier this year I met with a small group of carers during a series of themed discussions. I’d like to share one particular session which struck me:

The topic for the session was: The experience of living with dementia – What you think people should know (about the experience of living with dementia).

Some of you who are switched on will immediately be wondering why I was not asking people living with dementia about the experience of living with dementia. That was going on at the same time in a separate group. Nor did I wish to speak to the carers about the experience of living with dementia in the broader sense of living near its presence.

I made it very clear to the small group that I wanted to know what they thought their partner’s would want to share about their own experience.

The group really struggled at first to express what the feelings and experiences of their partners might be. I was immediately struck by the extent to which the years of a prevailing ‘care for carer’ ‘stress and burden’ model can really inhibit seeing the other side of the story. It revealed the extent of the default position that many people have referring to their own experiences and feelings as opposed to those of their partners, which they were asked to focus on.

It was not the case with everyone, however, and a few became extremely thoughtful in thinking back and really putting themselves as far as possible into the shoes of their partner. Nevertheless I found myself using a range (repeatedly) of follow-up questions such as:

‘So how do you think your partner is feeling about this?’

‘How do you know? How do they respond to you? – so what does that action/response tell you about their experience or feelings?’

The discussion highlighted to me what ‘dementia-friendly’ really means within a relationship. If people have lost a sense of identity, control and voice within their closest relationships – in the very place they spend most of their time (at home), then how ‘dementia-friendly’ the community outside might feel could well be irrelevant. This is something we need to address.

Despite the focus of the session, carers produced a familiar offload and spoke a lot about the ‘difficulties’ and ‘aggression when they’re angry’. ‘It’s like looking after a 2-year old’ was another comment in the familiar litany. Whilst acknowledging the frustration behind these statements, I pointed out that no-one in the other group would be describing themselves as like infants.

Clearly these statements associating dementia with aggression indicate that the problem may lie with a lack of understanding and knowledge; limited acknowledgement of care partners’ feelings and experiences; and about the nature of dementia itself. This is no criticism -as the brilliant Wendy Mitchell often says ‘Dementia does not come with a handbook’.

We looked at possible reasons behind such anger. The group offered a whole range of valid reasons –

-frustration at not being able to express oneself as well

-feeling bossed about and told off

-frustration at being tested and questioned when seeking quiet time

-a whole range of other physical illnesses (cancer/heart disease/arthritis)

One carer astutely pointed out that when looking back, he could nearly always pin point a logical trigger to any ‘outbursts’. The powerful message was that such ‘aggression’ is not down to dementia. Rather it is down to situations that we can all find ourselves in. One carer mentioned his wife (who has dementia) says, ‘Sometimes I have a bad day’ – don’t we all?’ – A breakthrough – I knew the empathy was there!

We did eventually draw out lots of insight into the experience of their partner –

  • Everyone mentioned the tears and devastation at point of diagnosis
  • Everyone acknowledged how their partner frequently wants their own space and independence;
  • Acknowledged how their partners complain about being ‘bossed about’ – (a difficult but necessary balance to strike when thinking about support and safety and one’s own concerns)
  • About the importance of a safe space to switch off (and also ‘let rip’ sometimes!) after a day that may have included the difficult task of putting on a social veneer – in a way a real compliment to the carer (however painful it might be!)
  • Wanting to keep one’s independence with just about the right support.
  • Wanting the reassuring presence of familiar faces.
  • All acknowledged the frequent ‘You know I love you, don’t you’ – very much a recognition and insight into the condition – and perhaps also a plea implying no little sense of insecurity. ‘Don’t leave me’ or ‘don’t hold this against me’

This session revealed two important points for me:

  • Firstly, I still remain so struck by how difficult it was for the carers initially to empathise with their partner. The need to offload for carers is perhaps insatiable. If, I suspect, the same can be said of people with dementia, then we must provide similarly frequent  opportunities for them to do so!

( http://dementiavoices.org.uk/deep-groups-news/our-dementia-our-rights/ )!

  • Secondly, the type of practical support needed around the time of diagnosis. Groups complain about lack of follow up ‘from the doctor’ yet how much medical involvement is really needed after diagnosis when what we seem to be looking for are very much the emotional support and the relationship-centred approaches that can equip families in just living the day to day? Should we really be surprised that the support we seek is not forthcoming from professionals with an understandable medicalised focus?

I understand the other group made up of individuals with dementia spent a lot of time mentioning some of the antagonisms they experience in their close relationships with family and friends – and everybody asserted that they are not infants!

Innovations in Dementia can help your organisation offer practical support around the time of diagnosis to equip families to avoid the many traps that dementia sets within relationships. See the Getting Along programme here: http://www.innovationsindementia.org.uk/videos_gettingalong.htm