Please Hold

I got a bit miffed recently– goodness we’ve all got plenty to be fed up about – but this was triggered after seeing further recent social media comments questioning some people with dementia because they are perhaps not as dependant as they should be – ‘atypical’ is the term often used.

But I’ve since calmed down as I try to understand reasons behind such messages from often highly qualified professionals

It soon dawned on me that it can only be that they have NEVER actually properly engaged with the individual with dementia other than through batteries of diagnostic tests. More often than not, the history gathered comes from the perspective of other family members.

2 things bothered me.

One is the idea that a new positive narrative led by people with dementia somehow undermines the gravity of the situation of a family living with the presence of a dementia – as if it’s not allowed.

The second is the idea that the messages coming from people with dementia through DEEP, the UK network of dementia voices, for example, are only those of the more eloquent ‘atypical’ of group members – they are not!

Throughout the network there are indeed many celebrations, the growth of positive relationships and a real sense of belonging and purpose amongst many members –in fact all the recognised benefits of peer support. Nevertheless, do not for a minute believe that everyone goes around ignoring dementia and spouting positivity.

Our conversations regularly address the pain and the confusion and the massive confidence blow of living with a diagnosis in a disabling world; they cover grief and loss of those who have died or who have moved into long term care; they cover the concern and fear of seeing a peer who has deteriorated from one month to the next – not ‘will that be me?’ but ‘how can we help that person remain part of this group as long as possible?’

Real life and real-life conversations go on and opportunities through a safe space to express oneself in an environment that is warm welcoming and non-judgemental are a right for everyone.

There is a massive range of ability, disability and intensity of experience amongst every group too and those more ‘typical’ members (apologies for that horrible term!) have contributed as hugely as anyone in local and national projects. The DEEP guides for example have all been created by and with an equally diverse range of people living with dementia from across the national network.

At York Minds and Voices, a group I have the privilege to help facilitate, it was Liz (God rest her soul) who themed a whole session on the post diagnostic course we co-created for recently diagnosed peers, whilst on the edge of independence and walking restlessly around our meeting space. It was Peter who, head bowed down, with a seemingly blank stare – always popped up with an apposite comment or an affirmation of what’s been said, full of feeling and righteousness.

Peter has recently moved into long term care and long after other services had been unable to keep him attending. We reflected on why we had been able to keep him and Liz with us for so much longer than elsewhere. It was because we hadn’t ‘kept’ them – rather we ‘held’ them amongst us – as everyone in our group holds each other.

I’ve blogged before about the need to properly listen to the voices of people with dementia here (Hearing Voices). They come in many forms and can be captured and responded to in different ways.

So please don’t dismiss a new narrative.  Embrace it. By dismissing the voices of people with dementia you are not protecting the family, you are potentially perpetuating a self-fulfilling prophecy of doom, gloom and hopeless loss for all concerned. It’s ok for the neighbour to put the kettle on for tea and sympathy but for those working in the field it’s imperative to support every member in the caregiving relationship. Peer support for everyone brings hope, belonging and potential – for everyone. Why would you undermine that?

Damian Murphy
Co-Director, Innovations in Dementia
May 2020

 

 

A Month of Lockdown

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Or read the full blog with clickable links below.

Well we’re around a month into lockdown. And of course each and every one of us has our own challenges, and our own ways of coping and adapting. So what are we learning from people with dementia? Blogs, Dementia Diaries, ZOOM meetings etc. are all giving us an amazing insight. Here are just some of the reflections which have struck a chord with me…

First of all, it’s clear (and hardly surprising) that the lockdown is a massive challenge to many, if not all. It has been described to me by more than one person as ‘having dementia all over again’. Agnes explains: “It seems like forever, because I’ve been living in a different reality and I’m trying to get my bearings and understand it. I never know what day it is, I’m being more forgetful, from forgetting to turn my calendar over and using the tips and strategies… They no longer work now and I don’t understand why… It’s like – you know the bubbles, when you blow bubbles…”  She explains that she is “trying to become not a human-doing, but a human-being”.

Peter agrees that he is finding it very difficult to absorb all the information about the crisis. Chris recognises this lockdown is almost like a bereavement: One minute I was out, and the next thing is I was literally on lockdown. So, all your emotions go along with that and it is difficult to know how to make things better for yourself sometimes, especially when you have a bit of a dip because nothing seems to motivate you then.” Wayne is certainly missing his exercise: “I know that I need more exercise and I’ve not been getting out, ‘cos I ordered a pair of trousers the same size as others in my wardrobe, and they’re a little bit too snug now.” Steve is finding the lockdown tough emotionally:  “It’s just being home and being vulnerable I guess. Can’t go out, can’t go anywhere, depression’s raised its ugly head again.” And Lorraine is really missing social contact and separation: “I feel totally on my own now ‘cos I live alone and it’s not an experience that I really like or appreciate… I miss, miss the contact with people desperately… Hugging my children and my grandchildren and giving them a kiss and coming in for a coffee. And the things that you really do take for granted that make your day. And at times I am struggling with this.”

It’s been common to hear people say how scared they are of losing the abilities they have – the ability to speak, to socialise, to get out and about. Glenda for example is starting to miss socialising: I’m just worried, will I be able to cope with people when all this is over? Will I be able to go on stage and talk and do the things I usually do? I’m finding my speech is getting difficult because I’m not speaking much to other people…“ And Wendy expresses similar fears in a poem:

“When this is all over, Will we be able once more

To take a simple trip, To walk into a crowded room?

When this is all over, We’ll all need support

To discover a new normal, To discover the world once more…”

Yet others are finding that life is not greatly different. Tracey is a bit of a ‘home bod’ anyway: “Most of the time people don’t realise even just travelling, using public transport, gives me anxiety for going to my meetings… But that also causes anxiety and relief when I get home and it’s just, I haven’t had as much anxiety as I usually would do.” Dreanne also recognises that older people are  “used to having to find things to do to occupy ourselves.”

At the same time, people with dementia are showing fantastic resilience, and… yes… leadership in their responses to the lockdown. They are often very good at adapting! As Jacqui points outPeople with dementia are some of the best mindfulness teachers, since they are living in the moment like no one else.Keith advises:I keep a diary every day, I keep a record, I keep a routine established. This helps enormously in enabling the days to pass and to pass quite quickly, to pass quite positively and then tick things off as they’re done.” Agnes is also putting strategies in place, including changing the words she uses to describe the current situation: “I have a thing ‘I’m Locked Down, I’m in prison, I can’t get out’. And then my daughter changed it round and she said, ‘Mum, let’s put a positive spin on this. You’re sheltering from the C Storm, you’re self-sheltering from this virus.’ So I’m indoors and I’m sheltering from the storm and while I’m sheltering, I’m gathering information about myself and I’m learning new skills and the new thing I have learned is, today, how to use WhatsApp.”  And Wendy is drawing on the reserves she has built up over a lifetime: “My glass half full personality looks for the positives to survive, whereas glass half empty folk find that so difficult and are immersed in the sadness. I wish I could give them some of my excess sparkle, some of my excess smiles…..I must really annoy them… Dementia once more has unwittingly given me a chance to forget the tragedy that’s around us. I’m sure it would be furious to know that the bubble of happiness I can enter is giving me a way to survive these times…”

Many are finding comfort and positivity in the world of nature – or in their gardens. Mhari has been enjoying digging the garden:  “lots of bees, absolutely millions of lovely, lovely bees, lots of birds… and yes all seems to be OK, and I have enjoyed my little garden”.  Keith is also enjoying sowing seeds and sitting outside in the sunshine:  “No matter how big or small a garden one has, one can sow a few seeds in pots and get some great pleasure from them and then the occupiers are thinking about their watering and nurturing them… or just (sit) outside on a patio or garden with a cup of tea or a cup of coffee and just take in what the world is providing us on these Spring sunshine days.” Wendy is doing much more walking than usual, and is exploring new parts of her local surroundings. Like others, she has found thatthis lock down has reduced traffic fumes, reduced pollution like we’ve never known it, allowing nature and the world to breathe once more. So maybe now, amidst all this trauma, we have to learn to slow down and appreciate what we have around us, whatever that may be…” And Ronald wonders: “I used to wonder where have all the birds gone. As I rarely saw and never heard them, I now know they were just stifled and crowded out by the traffic and people. All day long now I hear birds singing.”

Other people have found new joy in indoor activities. For example, Martin is keeping  busy with books and virtual games: “… we’re really thrashing Amazon Prime, finishing my 10 library books, (I hope there’s no fees as I would be bankrupt), and worst of all enjoy playing games on my iPad, definitely not educational ones either… some thinking required and yes some shooting. Definitely not educational!”

Finding ways to stay connected with our communities of interest is very important. Mhari has really enjoyed a virtual sing-along with other members of the Church. Agnes has also found a way of continuing to worship: “One of my misses was not getting out to my Sunday Mass… but through Google I found another one… I was in the virtual Mass at ten o’clock this morning… it uplifted me and it made me feel really, really good…” And Chris has been joining the Thursday evening ‘clap for carers’, playing ‘For He’s a Jolly Good Fellow’  on his tenor horn to his neighbours.

For some, this pause from their activism work is a huge relief. George confesses: “The world has stopped and I love it… Well, because I am not constantly annoyed about the CCGs and others refusing to either listen, engage or act to improve dementia services. And planning my strategy. Writing another letter, another FOI. It’s been a pain in my brain for nearly ten years. And now it has gone.”

But the happiness some are experiencing is tinged with guilt. In her blog, Wendy says: “I’ve found myself disappearing into my own world, suspended in a bubble of happiness that only a ping from my phone or iPad can burst. A reminder appearing to contact a friend who is struggling, not well, confined to bed and that’s when this guilt appears. The guilt that a moment ago I was happy and unaware…” And George also realises:I am enjoying this silence. Many are not…they will be alone, staring at walls, unable to get the food they enjoy, wander around, maybe see familiar faces passing their windows. And many will not understand why. They will not remember why.”

It is clear how much little messages and small acts of kindness mean to people. Glenda really appreciates Facebook messages and was also very pleased when her nurse phoned her : “I was feeling quite depressed first thing this morning and then the phone rung and it was my nurse Mari, and she just phoned me right at the right moment… she said my speech was better at the end than it was at the beginning of the phone call…”  George reads a Wordsworth poem to comfort other Diarists who have lost friends and family ‘to lift our spirits’, and records the sounds of the stream and the birds in his garden, in the hope they will relax others. Wendy has been posting her photos on the village website “and have made so many new friends through it, some of whom I may never see and others who now recognise me as we’re out for a daily village trundle and they see the camera round my neck. I’m told my photos bring joy, which is why I carry on posting them. Some villagers are unable to get out and they say how it brings the outside world to them.” And in response people in the village have been so kind in sending me maps of new village walks to trundle along, as long as I post the piccies at the end.”

The role that the groups in the DEEP Network play has been of great interest. It seems that those that are set up and supported by formal organisations (such as the NHS) are sometimes less able to continue their support in this crisis. Very understandable… but they also seem unable to hand over power to their members, for example by finding ways to share contact details so that members can keep in touch with each other while unable to meet physically. The smaller, less formal groups do seem more flexible in their approach. Many of course are well-used to using ZOOM to connect with each other, so that groups like the ZOOMettes and the Dementia Diarists have hit the ground running. Wendy held ‘virtual cuppas’ twice a week, which were much valued by those taking part: however she found that “Zoom is also, simply, exhausting…having to concentrate so hard at listening. At the end I close my eyes and let the mish mash in my head settle again.” She had to stop after a few weeks.

People with dementia have also been keen to use their knowledge and experience to provide others with support during the crisis. Some have contributed to our Coronavirus resources page, including tips for volunteers.

But DEEP members are also devising ways of keeping things light. We have seen the emergence of a competitive spirit – mainly relating to sunflowers and vegetable growing!  Many people are also joining in the challenge to make a blanket of knitted squares – and for some, knitting is a long forgotten art! Wendy says: “I looked at the wool, looked at the needles and didn’t have a clue where to start, so that’s when You Tube came into action….first showing me how to cast on….playing it over and over for each stitch until I’d got the right number (playmate Dory had told me how many I needed)….then I watched another You Tube for how to knit the square…”

And finally of course, there are reflections about what the future might hold for all of us after this time of limbo. George for example is thinking through the wider implications of the crisis: “It seems to me that we have the real possibility that thinking about economy, entrepreneurship, health provision and government may soon change.” He is hoping for “a new Jerusalem. A fair, just society, in which we pursue happiness for the many not the few.”

Let’s finish with his beautiful and poignant poem:

“But for now we lie, half awake, half dreaming

Waiting to see if our clock is about to stop

Waiting for the warming sun to rise on us again

Waiting to pass into a new land

The same but profoundly different”

 

Philly Hare
Co-Director, Innovations in Dementia

 

 

Crisis… and opportunity

Well, we’re not long into this COVID crisis, but every day we are all having to think differently about what it means for each and every one of us.

So we thought we’d take stock of where we’ve got to – and what we – in our very small organisation – are learning so far from people with dementia. We want to work with them to counter fear and uncertainty with hope, pragmatism, humour and courage. And we want to recognise that every crisis brings not only danger but opportunity – as the Chinese character for Crisis testifies.

Not surprisingly, people with dementia are telling us that they are finding all this very discombobulating and confusing. Wendy Mitchell has written a poignant poem about her feelings now that she is self-isolating in this ‘different world’. And in her blog, Wendy says: Me and a few of my playmates have all said how our speech is more of a challenge now, word finding slower, more gaps in our sentences. So it is still a possibility that this challenge will continue. But we’re all trying to fight it through Zoom calls and through recording Dementia Diaries – at least we have those options.”

Many people are finding their emotions are more volatile. Jacqui, for example, has been very upset that her PA has had to suspend her services – but is asking for a retainer fee:  “I was really, really shocked… I had a terrible night’s sleep – I don’t think I did sleep – I woke myself up shouting… I really didn’t expect it to affect me that much.”

At the same time, the resilience and imagination of people with dementia is endlessly impressive and (yes, a cliché) inspiring. They have been dealing with uncertainty and confusion for many years, and have so much to teach us. Agnes has recorded a Diary to explain the ‘silver lining’ of the crisis: “It’s going to be very, very interesting and I’m looking forward to it. And, to those who are listening, maybe you can’t pop in and see people living with dementia, but try and think outside the box. How can you connect with them? How can you relieve their anxiety, their isolation? And I’m just thinking I’m creating a new pathway. Wow I think it’s wonderful.”

George Rook is another person with dementia who is using his blog to help come to terms with the crisis: We may not have the care and support some of us need. We definitely won’t have the face to face company and touch that we all very much value. The travel that provides variety, challenge and confidence. But it does me no good to think about how things ought to be. How things might be in a perfect or even imperfect world.  And it does me no good to dwell on this shitty disease, the nightly ‘mareish dreams, and the things I find difficult… No, I am feeling much more relaxed than for years. Hugely relaxed. Can’t believe it. I’m not angry and frustrated about my CCG. I’m not worrying about an agenda for an upcoming meeting. Or whatever I committed to doing at the last one. The evenings are getting lighter and, sometimes, warmer. My seeds are growing… So my message is… Don’t dwell on difficulties. Find something new to do.”

Our Dementia Diaries project is already based on remote communication – but we are now upping our efforts to attract more would-be Diarists. This is because we know how much it helps people to be able to offload their thoughts and feelings into an audio diary. For those who wish, Steve is facilitating a ZOOM meeting for Dementia Diarists every Wednesday morning (contact steve@myid.org.uk).

We have also got a dedicated page for Coronavirus Diaries which is building every day, and which is a fantastic resource for families, researchers, policy-makers and practitioners – as well as for people with dementia themselves. Keith Oliver for example has written a letter to his old adversary ‘Dear Alzheimer’s’. Glenda tells us how she is keeping busy and positive, and Julie points out that people with dementia can show the rest of the world how to cope, and urges us to stay positive. Meanwhile, Dreane decides that a naughty poem about knickers will cheer people up!

Like everyone else, we have sadly had to postpone all our planned gatherings and physical meetings – and to find new ways to keep people busy and engaged. Some projects lend themselves readily to virtual collaborations – for example our Dementia Enquirers Pioneers will be working with a high profile researcher over the summer to co-produce a journal article for ‘Disability and Society’. All the work can and will be done by ZOOM and email.

More generally, we have been trying to oil the wheels of communication so that people can stay in touch with each other. We want to reinstate the joy of communication through letter writing and phone calls. We’ve already sent out dozens of handwritten picture postcards – and will be sending many more. Some recipients have replied with a letter, a postcard or a phone call – and it’s clear that this simple contact means a lot to them (especially to those who are not online).

We are luckier than many others because we’ve been using ZOOM for a long time now, so many of the people with dementia we work with are very comfortable with using it (in fact, they actually taught us!). Frances Isaacs and the ZOOMettes have already made a film about how to use ZOOM on a laptop or desktop PC (you can view this below).  As well as a guide to setting up a virtual peer support meeting using Zoom.

How to use ZOOM – click the video below to watch

Our colleague Steve has been quick to produce several short videos, focusing on helping those who are less familiar to install ZOOM onto their phone (not needed for laptop or desktop computer – see video below) and on how to respond to an invitation and take part in a ZOOM meeting (see second video below). We’ve also adopted a format for ZOOM invitations and reminders (shared on Twitter) to help people be clear about which Zoom meeting is which.

Getting ZOOM on your iPhone – click the video below to watch

Joining a Zoom meeting on the iPhone – click the video below to watch

We are too small to stay in contact with everyone and we are not resourced to provide a helpline, or local support or advice. So, with the DEEP network, we are focusing on supporting local group facilitators, with regular weekly ZOOM meetings (contact Anna Anna@myid.org.uk for details). Supported by DEEP, Wendy Mitchell is also hosting a twice-weekly ‘ZOOM ‘cuppa’, which anyone is free to join up to.

We are also publicising on the Innovations in Dementia website a small number of resources that we think are especially helpful to people with dementia and those who are supporting them. And we are distributing more hard copies of DEEP News so that the group facilitators can send them on to anyone who wants one (in addition to the online and audio versions). Rachel our DEEP coordinator, has set up a sunflower growing competition and a collaborative blanket making activity.

Of course the individual DEEP groups are working very hard to keep in touch with everyone. For example ‘Me, Myself & I’ in Briton Ferry, Wales are offering up to three phone or video calls a week, and a monthly ‘letterbox chat’ by the gate or on the doorstep. And York Minds and Voices are meeting weekly by ZOOM (some members have never even used a tablet before, but all are being supported to do so). ‘Still Me RCT’ are carrying on their creative activities by posting equipment and putting instructional videos online. They are also thinking of creative ways to use their recycling – such as growing seeds in juice containers.

We are also using this period to strengthen relationships with other dementia organisations and to redouble our efforts to work collaboratively for the good of all. More on this soon…

Finally, we’ve put together a video message (see video below) summarising this approach and explaining how we are helping people to stay engaged and connected. We particularly want to stress that everything we are doing or planning is based on the expressed need and experiences of people with dementia – and almost always based on their ideas and solutions. This unprecedented crisis offers all of us a new opportunity to do that.

A message to people with dementia from Innovations in Dementia – click the video below to watch 

 

Philly Hare
Co-Director, Innovations in Dementia

 

 

Hearing Voices

I’ve been hearing voices for the last 20 years or so.

Little niggles that made me deeply uncomfortable about how some dementia services operated; about why people practised in certain ways; and about why people with dementia were treated (or not!) in certain ways. I can’t be the only one who has heard some of these voices over the years. Here are a couple of examples:

‘Why’, asked the voice in my head, ‘is this the only illness where so much in terms of information and service is directed at the person without the diagnosis?’

I was a ‘carers support coordinator’ and ran support groups and information programmes.  Was I perpetuating this one-sided approach? ‘So where is the information for those living with dementia?’ continued the voice.

I was never comfortable about the term BPSD. ‘Why the blame?’, asked the voice.

I had often thought these questions had come to me through intelligent intuition. It had to be an innate (or nurtured) sense of justice that made me feel revulsion whenever reference was made to ‘managing’ people, as if items on a factory production line. It was surely that same intuition that made me wince upon hearing yet another disparaging or sweeping statement about ‘them’ by an over-stressed, under-equipped staff member or care partner. It has served me well. Or has it?

Apart from putting £2 at 100/1 on Wigan Athletic to win the FA Cup in 2013, that intuition regularly tends to desert me on a Saturday afternoon when having a bet. So why, then, did I hear these voices? Because they weren’t born in my head.

They were the voices of real people They had been spoken, shouted, screamed or whispered to me over the years by people living with dementia.

They were there in the deafening silence of the person withdrawn to the point of powerless passive resignation, no longer able to respond with what was once a quick retort, for example. ‘I don’t count any more, in conversation, in relationships’.

They were there in front of me in the distressed actions and reactions  of the most impaired. They were there in the form of a letter from Richard, demanding to know why he was excluded from a carers’ information course his wife was attending. ‘I’ve got a right to be included too. After all, I’m the one with the diagnosis’. The huge effort he had made to get his message across was evident in the already failing handwriting on the page. Subsequently, Richard and I set up a local forum of people with dementia  – the Stirrers’ group as he called it.

They were there in the table-thumping cries of Gill: ‘It’s not our fault. We must be allowed to make mistakes!’ And in Rita’s exasperated explanation: ‘You might think it’s irrational for me to scream and shout sometimes, but I have to be like that – otherwise I’m nobody’.

They were there in the silly arguments, or even blazing rows, I’d witness amongst families, desperate for a break from the many antagonisms that dementia was presenting  them. They were there in the clear yearning of couples to be equipped with strategies to just get along better together at home, where they spend the vast majority of their time.

They were there in all the unanswered questions that so many people had, coming out of a meeting, having just received news of a devastating incurable condition and with something vague about powers of attorney and driving ringing in their ears. ‘So, what does this mean? How long have I got?’; What will happen?’

They were there in the statement from Elizabeth: ‘My biggest complaint about dementia is other people’; and in the desire of peer groups to develop an information course including a session about addressing the possible challenging Behavioural and Psychological Symptoms of Carers (BPSC)!

The dementia voices are out there, all the time, in the most eloquent and in the most impaired. We must continue to listen and get comfortable with that discomfort! Over the years, many of us have responded to these voices in our own sphere of influence. This  is great, and it has given rise to some excellent practice examples dotted around the country.

But we have been asking ourselves – what could be achieved if we could find a way to allow grassroots voices to resonate with, and influence, a much wider audience? It is with thanks to funding from The National Lottery Community Fund that we are in a position to seek to do just that as we launch the Dementia Voices project.

Dementia Voices will allow us to better harness the collective potential of the DEEP network (over120 peer groups of people with dementia UK wide); the Dementia Diaries project (a growing, relevant and current resource of first-hand testimonies); and the Dementia Enquirers project (putting people with dementia in the driving seat of research). It is about:

  • Supporting more people to have their voices heard, and finding new ways to achieve this
  • Being more strategic in ensuring these voices can have maximum impact in the places where they can do the most good
  • Placing more control in the hands of people with dementia themselves.

 

We are delighted that The National Lottery Community Fund recognises the role that the voices of people living with dementia can play in building momentum for a necessary cultural shift in how dementia policy and services are designed, developed and delivered in neighbourhoods, communities, regionally, nationally and beyond. We hope you recognise it too.

So, what does this mean in practice? Well, there is a huge amount that can be done. The dementia voices are still out there as an inexhaustible resource to help you all revisit how you operate. Ask yourselves:

  • To what extent are people with dementia really in control of leading the service agenda, locally, regionally nationally?
  • How much input have people with dementia had in developing and delivering services?

 

Any strategy or approach built on dementia voices needs to include the space for ongoing and consistent engagement with people with dementia, not one-off engagement exercises. People tell us they are tired of that.

Every area needs the establishment of groups of people with dementia that are growing, evolving, interested and engaged. It is no accident that the members of peer groups like Minds and Voices in York, for example, are always keen to get involved in projects and research. It’s born of a freedom and a sense of belonging to a group, something that is common to all those groups in the existing DEEP  network. We can help you build your own local networks which are able to tap into that national network of dementia voices too.

Dementia Voices is also about tapping into the experience of people with dementia, whatever the intensity of their condition, so as to ensure more diverse voices are heard and responded to  – to match the need to support people through to end of life, for example.

Dementia voices have been telling us for years to end that post diagnostic no-man’s land; to offer information programmes led by peers that answer the questions that people with dementia have; to equip families to avoid the pitfalls of living with the presence of a dementia in the house; to end the blame game; to present information clearly and precisely; to have respite that provides the sort of break that works for BOTH partners; to provide hospital stays without unnecessary delays; to talk openly about end of life, and so much more.

So, listen to the voices, no matter how uncomfortable they make you feel. They’re not in your head, they are real and all around you, and growing louder. Listen to the Dementia Voices.

Now I’ve got a funny feeling Blackpool might be in for a good cup run this year – I’m off to the bookies!

Damian Murphy
Co-Director, Innovations in Dementia
January 2020

 

 

 

Measure me

“When you look at me
You will measure me
by my awareness
by my response
by my age
by my development
And you will find me lacking
But for me you are measuring with the wrong cup.”  

This beautiful poem was sent to me by a dear friend following the death of my father in 1991. Dad had been left seriously brain damaged and totally dependant after heart surgery. Mum and I had him home for what was a short, but intense, full time caring experience.

Despite the passing of time, I always think of Dad. That experience allowed me to see beyond the shell of the broken body and altered the course of my life. If he had not been ill, I would never have taken the path I did into learning disability nursing and dementia, nor would I have met and married the girl of my dreams. I was intending to head off for a life in Mexico (don’t worry, I spent a fair bit of time out there!)

Dad always comes to mind when, frustratingly, I see that people or their experiences are measured with the wrong cup. Here are a couple of moments that struck me recently at the recent UK Dementia Congress.

At the Tom Kitwood memorial lecture we heard the inspiring Professor Steven Sabat, who eloquently dismantled such blunt instruments as the Mini Mental State Exam (MMSE). He shared with me later a story about a man who could not answer the question in the test ‘what day of the week is it?’ He reflected upon whether the man had capacity to know which day of the week it was. So he asked the man again…

‘Is it Monday?’ – ‘No’.

‘Is it Friday?’ – ‘No’.

‘Is it Thursday?’ -‘Yes, it’s Thursday’ (it was indeed Thursday). The man knew it was Thursday. He did not lose a point on the scale.

It was a powerful reminder of the fundamental need to build a relationship in that daily human encounter, however brief, that many of us have in our work with and alongside people living with dementia. Unfortunately people are still being assessed as if a fish out of water by individuals they have never met before in hostile environments (clinics, hospitals). Measure me if you must, but measure me with my cup…’

At the same Congress I attended a presentation sharing the findings of ‘Journey Through Dementia’- a post diagnostic programme. Information about the project was shared, and a man living with dementia gave a powerful testimony about how the programme had transformed his life. He then handed over to a researcher, who showed a very impressive graph of the results of a validated evaluation scale of the programme. It showed that there was absolutely no evidence of the efficacy of the programme! This juxtaposition of evidence was ludicrous. So which do we heed? The real testimony of lived experience or the evaluation scale? ‘Measure me if you must, but measure me with my cup…’

At Innovations in Dementia, my colleague Steve Milton and I are fortunate, thanks to the National Lottery Community Fund, to facilitate a network of dementia-specific lottery-funded projects – the Dementia Learning Network. We are halfway through a two-year pilot. One of the most common difficulties we share is how best to capture and present outcomes of our projects, when findings invariably do not neatly fit into any established ‘validated’ scales.

The excellent project on providing peer-led bereavement support, run jointly by the Extracare housing group and CRUSE, soon discovered how ‘messy’ human encounters, and the data coming from these, can be. It just could not fit into any established quantitative measurement tool, and they soon turned to gathering more qualitative material. Despite the difficulty they still have in gathering evidence for the work, it is clear this programme is hugely meaningful for both people receiving the support and those bereavement partners too. The challenge is finding the right cup with which to measure this.

The current resource of measurement tools and evaluation scales should not be exhaustive. People with dementia themselves are often best placed to decide what should be measured. For example, the members of Minds and Voices DEEP group in York made their own choice of measurement scale for the recent Good Life With Dementia course they delivered.

The collaborative potential of the members of the Dementia Learning Network, and the new Dementia Enquirers programme where people with dementia are leading their own research, means that alternative and more inclusive methods of gathering and recognising evidence are surely on their way.

Dad scored 0 on any tests around capacity, independence or cognition. Perhaps there was a folly in what we were doing. We did not have a tool to measure Dad’s sense of belonging or the extent to which he was still capable of seducing those around him, although in a completely different way than he had done for the previous 59 years. Nor a scale to capture how he remained a source of love and unity within the family and beyond. Let’s all make sure we capture what really matters!

“But for me you are measuring with the wrong cup.
So measure me if you must
But measure me, too, with my cup
And you will find me full”
Niemann Pick Disease Group

Viva Mexico!

Damian Murphy
Co-Director, Innovations in Dementia

 

 

 

Ordinary people leading ordinary lives talking about ordinary things

I grew up in an ordinary town in the foothills of the West Pennines, amongst ordinary people leading ordinary lives. Or in an extraordinary town full of extraordinary people living extraordinary lives.

A recent fascination for me is the story of Worktown – a mass observation study of the neighbouring town of Bolton in the late 1930’s, recording accounts of daily working life in painstaking detail. Amidst criticisms of such an enterprise (well-educated, middle class, chaps transplanted as anthropologists of northern working class life), the recording of everyday lives of ordinary working people -in the pub, the dance hall, the cinema, the mill and on holiday in Blackpool -brought these (extra) ordinary daily experiences, voices and stories to life.

In many ways, the everyday experiences, voices and stories gathered through DEEP and Dementia Diaries, mirror the social documentation of the Worktown observations. Diverse and distinct voices sharing multiple (and sometimes contradictory) views – but woven together in powerful and unfiltered documentation. Dementia Voices: not a top-down model of consultation but where power is directly in the hands of people with dementia to use their human stories, their real lives, to achieve influence, social change and peer support – “in our home, our street, our town or our country.”

We’ve been marking a moment in time recently. Collecting postcards of what DEEP means to people with dementia in groups; counting numbers of people, of ages, of genders (in essence a DEEP census) and capturing the story of DEEP- and the dementia voices within this burgeoning network. Giving space to people’s stories – of their lives worth living.

It’s a partial view – told from the perspective of people with dementia. Politicians, academics, medics, researchers, media, families and communities have their own partial view. Sometimes these partial views don’t rub along together – other times they connect to paint a broader picture. There is nothing wrong with being partial.

“But it’s our story, our history told in the ways we want.”

Extraordinary voices telling extraordinary stories about extraordinary lives.

Rachael Litherland
Co-director, Innovations in Dementia

 

 

Gobbledygook

Last month I accompanied Stewart, a member of York Minds and Voices, at the request of the local NHS clinical networks (I think) at a day’s event. This was designed to give local CCGs and relevant stakeholders in dementia care – mostly Health – a gentle kick up the backside to increase the diagnosis rates of dementia.

The entire UK list of CCGs in the UK in bar chart form, presented on unintelligible and illegible PowerPoint slide after unintelligible and illegible PowerPoint slide, confirmed the need for this.

I’d been asked to come and present a ‘patient or carer’ perspective to reinforce the message that it is important to get a diagnosis. I couldn’t believe there was still a need for this. Then I thought about two (probably of many) reasons why there might be some reluctance to diagnose, despite the unequivocal position statements of the major dementia charities.

Firstly, recently I was fortunate enough to interview the wonderful John Killick. He told me how he still saw receipt of a diagnosis as a potentially double-edged sword. He expanded his point. We always hear the mantra ‘once you’ve met one person with dementia, you’ve met one person with dementia,’ yet this principle goes out of the window at diagnosis. John says we need to provide personalised diagnoses.

Secondly, there are too many people coming off the diagnostic conveyor belt for overstretched teams who are tied up spending a lot of time measuring deficit. Third sector groups fare little better. They are making first contact, giving info on driving, powers of attorney and trying to get the benefits started – and then only able to check up around that six month time again. People with dementia are offered hit-and-miss Cognitive Stimulation and tired outdated ‘usual suspects’ of service – all stuff created by others.

The answer to that though is not to not diagnose, but to revisit how we operate; to frontload our response around the time of diagnosis; and to offer practical responses that are drawn from, and match the experience and expectations of, people living with dementia. Why do people have to wait for a diagnosis despite the presence of an obvious cognitive impairment? Certainly in Wales the ‘working diagnosis’ is advocated in the national plan.

I’ve never met anyone with dementia saying ‘I could do with a bit of stimulation now that I’ve been diagnosed’. In our brief ‘chat show’ style interview, Stewart instead mentioned the massive impact of receiving a diagnosis; and the many questions he was left with about the implications of it, his future, his mortality and his relationships.

We showed our five- minute film of the ‘Good Life with Dementia’ programme (http://bit.ly/2xHNpsv ) which was created and delivered by Minds and Voices members themselves. It covered all those questions and more. Who better to learn from than from peers who have been through the same experience, at a pace and in a place that is safe, comfortable and non-judgemental?

We went down well, finishing on a rallying cry to up their diagnosis levels, and to equip their own staff to populate a post-diagnostic pathway with practical stuff that matches the agenda of people living with dementia. Hopefully we helped remind people as to why they were there and offered a model that can be replicated elsewhere.

Stewart and I stayed until the next break (they had nice pastries). What followed was simply baffling. More unintelligible slides, long words and graphs. I gathered something about a new NHS ‘how to’ guide. Clearly a great deal of work had gone into all this information, none of which was understandable to people living with dementia. We saw countless screenshots of pages of this resource up on the screen. Stewart looked quizzically over at me and the sweeping gesture of his hand indicated it had all gone over his head. I read his lips: ‘It’s all gobbledygook’.

If it cannot be explained and presented simply in plain English to the person this is all aimed at, it is doomed to fail. ‘It’s not because you’ve got dementia, Stewart, that you don’t understand that!’ I said.

Stewart says, ‘They don’t understand what we’re thinking and we don’t understand what they’re thinking’ – not a particularly good starting point!

I was left with the sense that some people there had lost sight of what is essential, almost trying to make rocket science out of it all. It’s time to listen to and properly respond to the needs, questions and experiences of people living with dementia. ‘Just ask us!’ is something I hear frequently at engagement events.

We did that, and co-created the Good Life with Dementia course. You can too – then the diagnosis figures will look after themselves.

However, part of me fears that, long after Stewart and I had left with our pain-aux-raisins and maple and pecan slices, our input had been lost amongst the gobbledygook.

Here is a link to a great blog by my colleague, Steve Milton, giving a more in-depth look at the need for Crystal Clear language.

Damian Murphy
Co-Director, Innovations in Dementia

 

 

“We’re on a journey. We don’t know where we’re going, but we’re going together”

This week we have announced 11 ‘Dementia Enquirers’ grants, awarded to groups in the DEEP network. The successful projects aim to find out about:

  • the benefits of Amazon’s Echo (Alexa)
  • how to create dementia-responsive video content about using Amazon’s Echo (Alexa)
  • the essential requirements for a multi-cultural meeting centre
  • whether class and ethnicity have an impact on how a diagnosis of dementia is given
  • the impact of people with dementia educating professionals
  • what people with dementia and Admiral Nurses know about each other
  • people’s perceptions and experiences of dementia – the pros and cons of considering dementia to be an invisible disability
  • the emotional and practical experiences of stopping driving
  • the needs of people with dementia who live alone compared to those living with a care partner
  • what transport systems can do to help people live independently with dementia

 

The motivation for many groups who applied was to find out about issues that are important to them and also to learn some new skills as a group. Mentors from the world of research will be available to provide advice and support. But importantly “they will be coming into our world rather than us going into theirs”. These projects are owned by DEEP groups and led by members with dementia:

“We hope this process can show people just what we can do! We don’t know what this can achieve. But through this process it could be life changing.”

Five people with dementia – known as Dementia Enquirers Pioneers – made recommendations to the National Lottery Community Fund (our funder) about which projects to fund. They recorded decisions on an expanded score sheet – using whatever worked best for them, including numbers (1-5), drawings ( 🙁 – 🙂 ) or words they came up with that mapped onto these scores (super sad, sad, fine/OK/neutral/so-so, happy, super happy).

“Sometimes we used facial expressions and movement to indicate our feelings and scores. For one of us an excited dance movement indicated a (5) – super happy!”

You can view a film of the Pioneers (and some advisors) reflecting on the grant making process https://bit.ly/2LXkmcT

So, watch this space! The 11 projects are about to begin and will work on their topics for a year – with support from Innovations in Dementia, mentoring from research/evaluation allies, and via their connections to each other. A guide to carrying out research projects is available free of charge here https://bit.ly/2JD6WkJ

We hope that the project can influence the prevailing approaches in research – while bringing new respect for the skills, expertise and resilience of those who are living with dementia. Early in 2020 we will announce another round of Dementia Enquirers grants for DEEP groups.

We don’t know where we are going, but we are going there together!

Rachael Litherland
Co-director, Innovations in Dementia

 

 

Is dementia a women’s issue? And if not, isn’t it high time it was?

 

Women with Dementia: Speaking from the heart 

Is dementia a women’s issue? And if not, isn’t it high time it was?

In theory at least, this question has already been answered, by a steady stream of reports marshalling the evidence[1] [2] [3] over the past few years. We now know that dementia has not only become the leading cause of death among British women – but also that British women are far more likely than men to end up as carers of those with dementia. And in fact, across all regions of the world, dementia disproportionately affects women. Both prevalence and risk are higher – and, intriguingly, the symptoms women typically experience are more severe. Two thirds of primary caregivers are women – and, in all formal care services (whether in the community, hospitals, or care homes), the workforce is predominantly… women.

And yet… there is so little research focusing on the gender issues in care or dementia, and the experiences and voices of the women affected are almost always missing.

Led by Nada Savitch, we recognised this early on. Our JRF-funded project with York University [4] aimed to use stories and reflections from individual women to inspire and inform the debate in a unique and insightful way. Kicking off with a national conference at York University in November 2014, the project led on to a report, a short literature review, a website featuring thoughts and reflections, and several pieces of work with smaller groups. Together these showed that the way women experience dementia is affected by gender, but also by many other factors – including education, ethnicity, sexuality, class, age, and disability. It also highlighted frequent resistance to framing  – or even talking about – dementia as a women’s issue.

So what has happened as a result of all this work? Well, in our view, not a lot! National policies and strategies across the UK hardly mention women’s needs or contributions as a specific issue. There is little debate about the higher level implications of what we have discussed – the possible impacts on how we as a society should arrange and adjust matters of pay, benefits and pensions, research priorities and funding, reasonable adjustments, employment policies, public toilets, continence services and the menopause, scammers, family counselling.. the list goes on. And few if any professional groups are specifically trained in what to talk or ask about when interacting with women with dementia.

So that’s why, this summer (2019), we held a wonderful gathering of women in London, to shine a new spotlight on the issue. The private, women-only event, was hosted by the amazing Jane Garvey (presenter of Woman’s Hour and the ‘Fortunately’ podcast), and brought together 14 women living with dementia, and some of their supporters too. They spanned three decades in age, they were straight, gay and non-binary, they were from ethnic majority and minority communities – and they travelled in from Belfast, the Black Isle, Brecon and beyond. Some were single, some in couples – some had children, others didn’t. They included a former police officer, a manager, an international writer, a nurse, a minister and a care worker.

One of them, Wendy Mitchell, later blogged: “Everyone started to arrive, and the room started to fill with laughter and pure joy…Hugs were in abundance, new friends made and old friends reacquainted…that feeling of instant unconditional friendship hugging the room.”

In the space of just a few hours, we talked about retaining femininity, respect in the workplace (and in general), being ‘talked over’, losing roles, making adjustments and compromises within the family, sex, incontinence… and so much more. Here’s Wendy again: We spoke of the role of mother being renegotiated. Dementia strips away so much from you, but stripping away the role of mother hits hard. I’m lucky in so far as me and my daughters were able to talk about it. Some families fail to talk and suddenly a mum with dementia is stripped of the most precious role – because those around her believe she now needs to be cared for.”

Serious issues all – but nevertheless there was much laughter in the room and many comedy moments (some completely unrepeatable). Every woman there inspired the rest – they were indeed, as one present described them: “some of the strongest, most honest, warm-hearted women I’ve ever met. They are more than inspiring.” The women they gained confidence and strength in just being together  – and found that they had so much in common that needs recognising and addressing. As another said: “we have a choice in life – lie down and die or get up and fight.”

So what next? Within the DEEP network, we have already started a regular online meeting place for women with dementia, using the ZOOM platform.  The ‘ZOOMettes’ will doubtless continue to grow, flourish and support each other. But the numbers who can engage with this are of course minuscule in the wider scheme of things (there are over 600,000 women with dementia in the UK [5]). So we will use the outputs of the event – a film, photos and an accessible booklet – to spread the word much more widely. There will doubtless be blogs and Dementia Diaries[6] too, from many of those who took part. We hope to co-produce guidance for professionals such as nurses and occupational therapists on ‘what to ask women with dementia.’ And we’d like to reach many more of the public through mainstream radio programmes and podcasts.

But at the end of the day, we’re a small outfit. We need many more allies (both female and male) to take up these issues and to shout out loud that Yes, dementia is a women’s issue! After all, it’s a matter of rights and equality. So what can you do?

[1] ‘Women and dementia: A marginalised majority’ (ARUK 2015)

[2]Women and dementia: a global research review” (ADI 2015)

[3] GADAA  https://www.gadaalliance.org/women/

[4] ‘Dementia: through the eyes of women’ (Savitch et al:JRF 2015)

[5] https://www.dementiastatistics.org/statistics/numbers-of-people-in-the-uk/

[6] https://dementiadiaries.org/

 

Philly Hare
Co-Director, Innovations in Dementia

 

 

How can we really make the Blue Badge work for people with dementia?

At last! People ‘who experience non-physical (‘hidden’) disabilities that result in very considerable difficulty whilst walking should be considered eligible to receive a Blue Badge’.  So… those with so-called ‘invisible disabilities’ – including dementia – can, from 30 August 2019, apply for a Blue Badge parking permit, which allows their car (whether they are drivers or passengers) to be parked closer to their destination. The recent announcement marks the biggest shakeup to the scheme in nearly 50 years.

As a result of the consultation, automatic entitlement to the Blue Badge will be extended to those in England who score 10 points under the Personal Independence Payment (PIP) mobility test of being “unable to undertake any journey because it would cause overwhelming psychological distress to the claimant”. Entitlement will also be extended to those who are assessed as having an enduring and substantial difficulty which causes them during a journey to either:

  • Be unable to walk.
  • Experience very considerable difficulty whilst walking, which may include very considerable psychological distress.
  • Be at risk of serious harm when walking; or pose, when walking, a risk of serious harm to any other person.

The new rules also allow local authorities to use a broader range of professionals to assess the nature and effects of an applicant’s particular disability on their ability to get around. However, despite the new criteria, local authorities will still have the final say on who does and does not qualify for badges.

………….

Many people have been involved in this campaign – not least groups in the DEEP Network. Here’s a summary of the role they have played:

Two years ago, in the summer of 2017, we co-produced a report about Rights with a group of people with dementia (the ‘Dementia Policy Think Tank’). This included lived-experience evidence about parking.  One of the group, Keith Oliver, travelled with Philly Hare to Geneva to present this report to the UN Committee on CRPD, and he also had a private conversation with the Rapporteur at which the Blue Badge issue was specifically raised. The Rapporteur was amazed that people with dementia had been denied access to this in England.

Keith and Philly Hare subsequently raised the issue again at a meeting with the Office of Disability Inclusion (ODI) in October 2017. Within months the Government launched a national consultation on the Blue Badge scheme.

Meanwhile a group of people with dementia in Scarborough – called DEEP Vibes – were starting to campaign on the same issue, following a meeting of three Yorkshire-based DEEP groups to discuss ‘Our Right to Get Out & About’. People with dementia identified a number of problems that entitlement to the Blue Badge could do much to address. These included:

  • risks of abduction, abuse or a fall to the person left while their carer parks
  • getting lost, frightened, upset, panicky and perhaps aggressive
  • being unable to walk a long way from a normal parking space due to lack of road sense or poor balance
  • [when driving] having to park far away and forgetting later on where they parked.

 

There were also issues around application:

  • the medical tests were measures of physical ability rather than mental ability or need for supervision
  • questions on the form and in the Mobility test focused on physical ability, not the need for guidance and supervision
  • after you’ve been through “all that expense and confusion”, you may not even be awarded the badge
  • under-65s must be on benefit to qualify
  • decisions varied by area: postcode lottery
  • and the forms were too complicated

 

Spurred on by their growing understanding of their human rights, under the UNCRPD and the Equality Act, the group gathered a range of evidence and quotes. They then wrote to their MP, liaised with the local council, highlighted the issue in the local media and set up a petition which got well over 1000 signatures. The MP took the petition to Westminster and presented it to the Transport Minister.

The group also produced some photos with their messages on them.

 

Locally there was relatively quick success. The County Council agreed that people with dementia or their carers could now apply for a Blue Badge over the phone – and answer “cognitive questions” such as “How will a Blue Badge help you?”, “Do you want to give up and go home if things go wrong when you are out?”

The work done by the group also enabled us at Innovations in Dementia  to send in a very strong response to the Department for Transport when they opened the Government’s national consultation on the Blue Badge scheme in March 2018.

We stressed the evidence we had collected about the social exclusion caused by current lack of access to the Blue Badge and its direct contradiction of the Government’s strategy of ‘Living Well with Dementia’. We also highlighted the lack of parity across the UK, with many people with dementia in England feeling discriminated against in terms of eligibility for the Blue Badge, and its concessions and privileges relating to parking.

And then, in June 2019… the new changes to the scheme were announced. A fantastic result!

………….

However… this is only the start of making the scheme fully accessible to people with dementia – even if they are eligible for a Blue Badge.

We have already highlighted to the Government the additional problems concerning the complexity and cost of applying for the Blue Badge, as well as the inadequacy of disabled parking bays, and the local variations.

So what needs to be done to make these changes really meaningful for people with dementia  – and how can we all play a part?

  • local authorities must be made fully aware of the new guidance and encouraged to apply it to their local scheme.
  • the changes need publicising very widely to ensure that many more people with dementia apply (whether they are newly diagnosed, or have had dementia for a while – and even if they have been turned down before). A proactive campaign involving health and care professionals, advice givers and third sector organisations would seem essential.
  • we must all spot ongoing problems and issues in the implementation of the new guidance, and highlight them to those in authority
  • local disabled parking bays should be reviewed and made more consistent. There are different rules in different places – sometimes you can park anywhere (e.g. in metered carparks), other times you can only park in allocated spaces. Some bays are only for disabled drivers (e.g. at hospital), not for carers. There are often not enough disabled spaces – more are needed. And spaces are often not wide enough.
  • we need to educate the public about invisible disabilities – public attitudes can be very aggressive.
  • the application forms are currently very complex, demanding a range of documents, and the cost is prohibitive to some (including cost of photographs). Most people with dementia would need help to apply, but not all have that help (one third of those in the community live alone).
  • finally, it is essential that people with dementia are offered a whole range of ways in which they can apply (e.g. phone, face-to-face, email, online, letter). One or two options will never meet the needs of everyone.

All of these changes are essentially ‘reasonable adjustments’ under Equality legislation. Which means that, without them, the human rights of those living with dementia will still not be adequately addressed.

Philly Hare
Co-Director, Innovations in Dementia