Honesty and, um, niceness

So it’s cool again now. 10.00 in the evening. I’m sitting in the garden at home. The hens are making a row for some reason…hope it’s not a fox moithering. (Shropshire word). Otherwise there’s not a sound.

I’ve spent the best part of two days in Birmingham at a DEEP meet up for Midlands groups’ members. At the very relaxed Woodbrooke Hall, a Quaker Centre. 

What did we do?

Well about 30 of us shared what we do in our groups to support each other, have fun, and campaign for change. We talked about a new website for DEEP. And about what a newsletter should contain. And, which was really important, how we should work as an organisation or network to address shared issues and campaigning. 

Oh there are such lovely people in the world. Yes, I did say that. Me, a chartered accountant trained to sniff out lies and to distrust what I’m told. Taken me forty years to shake that off!

Well not completely, to be honest. I do distrust what people say unless I sense total honesty and, um, niceness.

But I have made such lovely friends. People I call family. I have two surrogate sisters now, Dory and Wendy. We just click when we meet. They make me want to laugh and cry, relax and sleep happily. (Not together.)

And the two Arachnoids? Rachael and Rachel, such lovely people with principles and values I admire and love to work with. They make us feel valued, important, alive.

So, while there were, and always will be, sadder parts of these days, it has been uplifting. What I cannot quite cope with is the whole day or more of hearing about how awful life can be for people living with dementia. It’s like having a nail knocked into my head, blow by blow, during the day. Reminding me of what might lie in store. 

Away from these meetings it’s easier to ignore IT. The DISEASE. To just do what I do, and not to think about the bad aspects of dementia and the future.

It’s unfair. And I get disturbed by unfairness. We don’t get the support and care we need. It’s different everywhere too. Why the hell isn’t there a standard, legally enforceable model of care across the whole of the UK for people living with dementia and their caregivers? It shouldn’t be optional, post coded! We have a right to equity of care and treatment.

There were some lovely, wonderful poems read out by people during the day. You are so good. Serious poems, silly poems, sad poems. You know who you are. Keep writing for us all, please.

It’s now time to take stock, absorb it all, sit back and breathe in slowly and deeply. And not think for a day or two. 

We need to just be. Between our valiant and brave work to influence change, we need to just…be. 

Remember what we enjoy. Read. Listen. Write. And re-energise till next time. Till our next meeting or blog, or tweet…

Thank you arachnoid twins. From my heart. Thank you.

My companion is beginning to bite

So here’s one about living with my brain disease, aka dementia.

I’ve noticed changes recently. Not huge, but noticeable.

And I’ve also caught myself thinking that before too long I may be more significantly affected.

Till now I have just taken it on the chin. It’s just another disease or illness to add to my growing list. I’ve got on with living and doing what I do, not hugely affected by IT. 

IT has been my companion rather than my enemy. IT has brought me new friends and fresh ways of thinking about life. While I do have a disability I have not felt disabled.

But things are changing. 

My balance is deteriorating. When I close my eyes standing I quickly wobble. Whatever I do if I don’t touch something to give me a reference point I wobble and get close to falling. Might be my elbow against the shower unit. That’s enough. 

I am more clumsy. This weekend we had some people staying. I knocked over a glass of wine by not lifting my hand enough away from it, and I often come very close to knocking cups and jugs on the floor. I’m just less good at judging distances and making quick calculations to avoid things.

Uneven floors and patterned carpets are suddenly a real problem for my balance. I cannot calculate quickly enough to make adjustments before I put my next foot down.

Carpet patterns which I used to cope with leave my eyes swimming and fuzzed. Patches of shade on floors that I don’t know well can also cause just a stumble as I walk. 

 

My articulate use of language is still intact, it’s my physical movement that is most affected.

But my hearing or decoding of sounds is worse. I am forever having to ask for a repeat, often several times. And I’ve booked myself a hearing re-test so I can get my hearing aids adjusted if necessary.

I was using a shower over a bath in a premier inn last week. Its the first time I really felt unsafe. No grab handle. Narrow bath. Just a curtain between me and the floor outside. I am going to ask for a disability friendly room in future, with a walk in shower.

So the reality of living with dementia is starting to require a few changes. A few alterations. Thinking more about what I do as I do it. Less autopilot. More manual flying.

My companion is beginning to bite.

I’ll look the other way

The NHS is 70 this year. Hurrah.

The NHS is starved of funding. Pooh.

We must give the nhs more funding this year to show we value it.

(We have starved the nhs for seven years.)

Cancer survival rates in the UK are below those in Europe.

Therefore, we must put more money into cancer diagnosis and treatment.

Let’s double cancer spending from £7.5bn to £15bn.

Ahem.

What is the biggest cause of death now?

Dementia.

More people die with or from dementia now than any other disease in the UK.

So why don’t we give dementia more funding?

For research. For post diagnosis support. For admiral nurses everywhere. For dementia navigators everywhere. For universal training for all NHS and care staff.

Oh no, I forgot, it’s that invisible illness that everyone is frightened of and would prefer to ignore and forget.

It’s dementia, and there’s no cure.

It’s dementia, that disease that makes people into silent, staring, ghosts.

No, why would we want to spend more on that?

Ahem, again.

850,000 people with brain disease.

Another million family carers.

Research break throughs on the horizon.

People living with dementia frightened to leave their homes in case they get lost or cant remember why or fall.

Family carers in crisis unable to get support and respite. At their wits’ end. Hell on earth.

Ahem

We have poor cancer outcomes. We don’t meet treatment targets. That’s what the public wants. That’s what we’ll give them. 

Oops…I mean that’s what their taxes will give them.

Dementia, MS, Parkinsons…weeelll…those people will die whatever we do. There’s no cure so…whats the point?

And by the next election, if we last till 2022, which I won’t but someone might, we can sing a great song of having given a hundred thousand people an extra couple of (treatment ridden) years of living.

Bring me the sick, the scared, the broken and the dying, and I’ll…

Look the other way.

Polly, you’re wrong; see the person not the dementia

Polly Toynbee has rcently written two pieces in The Guardian about assistied dying and dementia. In May she wrote in relation to Katherine Whitehorn, a famous former columnist with The Guardian.

in March Toynbee also wrote about assisted dying and the right to choose, with considerable comment on dementia.

Here I have quoted selected paragraphs from the two pieces and added my observations on what she wrote.

Frankly, I am appalled at the attjtudes that a respected commentator has displayed, and the way she reinfoces the myth and stigma around dementia. So here goes…

….

May article

‘Katharine [Whitehorn] is now 90, living in a care home, suffering from Alzheimer’s, with little understanding left, no knowledge of where she is or why. She often doesn’t recognise people, can no longer read and curiously sometimes talks in French, not a language she knew particularly well: she will never read or understand this article. In other words, she is not herself. Her old self would not recognise herself in this other being who sits in the care home dayroom. What or who she has become is a difficult philosophical question, but she is no longer Katharine Whitehorn as was.’

No, she is still the same person. And we must engage with her as a living, real, person. Yes she has advanced brain disease which has hugely reduced her capacity to react to her surroundings and to make decisions, find words, but she is not living dead. 

‘But the greatest horror of all is Katharine Whitehorn’s fate, not dying, yet dead to all that makes life worth living.’

This is a patronising view of other people’s lives. Of course its horrid, of course she cannot enjoy life as she used to. But she is still there, inside, a kernel in a nutshell which we find it impossible to see through.

All people are different and find different things that make their lives worthwhile. And this changes over one’s life. As you become incapacitated by diseases you change, you enjoy what you can still enjoy, and imagine back the memories of things and events you loved doing when younger.

What people with healthy brains cannot understand, is how to get into the more and more hidden world of the person with dementia. And you cannot necessarily see when the person is happy or not. You have to spend time with them, understand tiny changes in behaviour.

‘Her sons say without doubt that if the real Katharine could see herself now she would be horrified, never having wanted to end up as she is. Indeed, most people find the prospect of this ending a negation of self, denial of a life’s work and character, a mortifying indignity no one should suffer. Who wants to leave family and friends with a final memory of themselves as a vegetable, a distortion, an alien being?’

This is horrible nonsense, and Toynbee is perpetuating the myth. Disease, sickness, growing old…these do not negate a life’s work. They may make “you” think what was the point, but that’s “your” problem and perception. 

Vegetable? Distortion? Alien? These words are destructive, judgemental, and dismissive of a person as a human being. Again, they perpetuate the myth and stigma.

We go through the seven ages of life. Each is no more worthwhile or valid than another. Brain disease, cancer, COPD, heart failure…they are all diseases that reduce us and kill us. But they do not take away our humanity, unless those around us take it away.

….

Having said all this, I believe that assisted dying should indeed be available. But how can this be done if you have lost capacity? The living will or advance planning document should be used and followed.

……

March article

‘Who doesn’t live in dread of losing their mind before their body gives out? The prospect of joining the swelling ranks of those with dementia who are warehoused in miserable nursing homes appals most people. So does the thought of being an intolerable burden to their family. But campaigners scrupulously avoid talking about the wider social landscape, the rocketing numbers of those with dementia outliving their brains at vast personal and social cost.’

So…intolerable burden…warehoused…losing your mind before your body…vast personal and social cost…Toynbee is just perpetuating the myth and stigma. ‘Kill them to put them out of their misery and to save us loads of money.’ Yes, we don’t want to be a burden, but we are people. Improve the care, change attitudes…so we can and do look after each other.

Cancer, copd, coronary disease, diabetes…all cost huge amounts to treat and to provide care as people move towards dying. We don’t say that is a waste, or an intolerable cost, or a burden. What makes brain disease different? It’s the fear that the media perpetuates, of dementia. Demented. Mad. Idiot. It’s still there, if you believe Toynbee.

‘Dementia is now the leading cause of death, the first time it has caused more deaths than heart disease. That stark fact should frighten us all, as the worst possible death is now the most likely.’

Why is this the worst possible death? This is nonsense, hysterical nonsense. Death from cancer is horrid, but it’s life. The journey towards death from copd is incredibly debilitating and crippling, but it’s life. Nowadays death from long term disease is or should be controlled, pain free, calm. Regardless of which disease(s) gets you.

The trouble is that we do not talk about dying…we fear it…we fear pain…we fear what we don’t understand. 

‘Hard truths will not be faced. How do we pay for the massive increase in care for those with dementia? To do it decently is phenomenally expensive. To do it badly is brutish cruelty. What priority should we give their care over, say, improving the retreating life chances of children? No one is meant to mention these tough choices in the same breath as the right to die, but of course they are closely connected.

If, like me, you have watched a beloved parent die in needless pain, longing for an end the doctors denied her, then you know this is a personal right everyone deserves. Evidence from other countries shows that even if people don’t use that right, their fears are put to rest knowing that, if terminal pain becomes unbearable, the choice is there. Denying that choice is sadistic. But beyond terminal illness, the fear of dying of dementia is terrible too, and a living will should allow us to end our lives to avoid that.’

So Toynbee claims authority because she watched a parent die in pain. That is not logical or justified. Why was that pain not controlled? Death is never going to be pleasant for those who watch and who lose loved ones. But that doesn’t mean we should kill people so we don’t have to feel pain and upset as they die. 

Nor does cost justify killing people. That’s pretty much nazism.

A living will, power of attorney…these are essential. People should have the choice of treatment or not, and these choices should be respected by doctors and lawyers. That may need a change in the law.

But when Toynbee speaks to 20,000+ readers about fear and dread and becoming a vegetable, a distortion, alien…that demonstrates her own lack of understanding, empathy and willingness to “see the person, not the dementia”.

Who on earth are you? (and other difficulties)

It is, of course, the disease underlying my dementia, but I am finding I cannot recognise people whom I have recently met. It’s happened twice in the last week. Both are people who were with me and with whom I spoke at meetings ten days earlier.

Of course, I just admit I don’t know who they are and ask them to tell me. But it is developing into a habit!

Why am I telling you this?

Because I think there should be an awareness of this as a symptom, and that you may need to remind me and others like me who you are. If I look blank and you are expecting recognition, just quickly tell me your name and where we last met. 

I’ll be working through my back catalogue, paddling furiously under the surface, so my blankness is just me processing data, trying to find a match. Help me out.

….

I was at a meeting this morning about a great neighbourhood wellbeing hubs project in Telford. 25 people sitting in a circle, all speaking quietly in what seemed to be a sound absorbing room. And when introducing themselves there was a sort of reluctant mumbling which meant I couldn’t hear most of them. Yes, I have impaired hearing, or processing, or both, but let’s all speak up a bit. And give me time to work out the words that have just been quickly mumbled…preferably “spoken”. Clearly.

Dementia friendly? Nope, fraid not.

We were planning a neighbourhood event in the summer. Lots of small stalls, activity rooms, loud music…I pointed out that loud music would not work for those living with dementia. Ah. Yes. Agreed. Well we could organise a quiet room. 

So plwds will be shepherded away on their own? I do hope not. They should be able to take part in activities, art things, cakes, watch and listen and talk. But if their sensory processing is bombarded with loud music they will not be able to. 

We do have a long way to go, don’t we! These good people want to be really inclusive of seldom heard groups, people living with disabilities, and those who do not feel able to access conventional support services. Which includes people living with dementia!

Please make it easier, not harder, for people living with dementia to remain engaged in their communities. Fun events don’t have to be loud!

….

The other thing to say is that I had an eye opening weekend doing DIY with my son. We work well together, him taking the lead, me being the old hand who anticipates what is needed before he has to ask. 

But I noticed several times that he thought up some simple solutions to little problems that I just could not imagine on my own. Like fitting a cut hole in a board for a plug over that plug without taking the plug face off. Dead easy! But I just didn’t see it. Twist the plug face.

But, like failing to find a simple word answer in the quick crossword, these solutions just doesn’t occur sometimes.

It feels like some new elements of my brain are beginning to fail. I can’t recognise people I met last week. I can’t imagine a simple practical solution to a task.

I don’t actually feel any different at all. But I’m suddenly aware of a failing that demonstrates disease progression.

….

So please, just remember the simple stuff. Remember, if we don’t react as you expect it’s because we are thinking like mad for an explanation of what is in front of us or what we are hearing.

Speak clearly and loud enough for us to hear and understand.

And can that blasted, blasting music!

Time for change in Dementia Action Week

Today I am posting a letter I have sent to our three Shropshire MPs, about 20 county councillors, and most of the board if Shropshire CCG.

It’s Dementia Action Week, and we all need to campaign for change.

To Members of Parliament for Shropshire

21st May 2018

Dear Sir, 

Support and care for people affected by dementia in Shropshire

Dementia is the name for a group of symptoms resulting from organic brain disease. It is not a mental health illness. It is a disease. There is no cure or treatment, but several drugs can enable the brain to function more effectively and slow the decline in cognitive capacity. 

Some 3,700 people living in Shropshire live with dementia. Over 2,000 live in their own homes.

67% have a diagnosis. 

Around 3,500 family members provide support and day to day care for their family members living with dementia.

What support and care is provided after diagnosis?

For the younger and fitter people, there is almost none. And what there is is broadly not what people living with dementia want or choose. It is what organisations think should be provided, such as dementia cafes with organised group activities. No more than 300 people living with dementia and carers attend these “cafes”each year. 

People in Shropshire have a co-produced dementia strategy and model of care, agreed two years ago. But Shropshire CCG is not funding its implementation across the county. 

After diagnosis, people living with dementia are left in a wilderness of fear, bereavement and loneliness. Until they reach later stages, perhaps up to ten or more years later, there is little or no support. And what people living with dementia say they want is mostly to be able to go on living as they choose, and to meet and talk to others in their position. However, many withdraw from social contact for fear of getting lost, forgetting why they went somewhere, or being unable to carry on a fluent conversation with someone who doesn’t know them.

Peer support groups, led by and attended by people living with dementia, and others for carers, are key to wellbeing and therefore health. But these groups need a small resource to initiate them and keep them going. This is not available, so there are just three such groups for people living with dementia in Shrewsbury, Oswestry and Market Drayton, and none elsewhere, run by volunteers without any funding or support.

Shropshire CCG does not commission an Admiral Nurse Service, nor sufficient Dementia Support Workers, to provide a consistent level of support for people living with dementia and their family carers across the county. Yet Telford and Wrekin does both of these things.

Admiral Nurses are key workers in relieving the crises families living with dementia face from time to time. They are clinical experts and spread their expertise throughout the health and care networks they work in. They support families through a crisis by providing a single source of support, and they find solutions on behalf of the families when they cannot navigate the disconnected sources of support available. They get over the barriers which others cannot navigate.

There is strong evidence that an Admiral Nurse Service is hugely valued and respected by users, and that it is highly cost effective, saving up to three  times their cost in reduced admissions, social care, gp attendances, and related benefit costs. Not to mention reducing the terrible levels of distress that families go through when trying to care for a person living with dementia during a crisis. Across England there are over fifty Admiral Nurse services. Whether you can access these depends entirely on where you live: a post code lottery.

The Shropshire Dementia Strategy includes the employment of Dementia Companions (navigators) to support people immediately after diagnosis through to end of life, with support and contact provided as and when needed. These Companions would provide the needed support to carry on living as we choose, to continue to be engaged in our communities and the activities we enjoy. Like everyone else. Without this support many people living with dementia lose confidence, become frightened of going out, and withdraw. Their wellbeing is severely impacted.

And yet Shropshire CCG is refusing to fund these posts across the county. They are funding two small pilots in Oswestry and Ludlow, but with no commitment beyond 2018-19.

People living with dementia in the early to middle stages continue to live in their homes, and want to continue to be engaged in their communities. Without relatively inexpensive support they withdraw, become frightened of leaving home, and lose confidence. They then visit their GP more frequently, are admitted to hospital more frequently, and remain in hospital longer. They also are much more likely to be moved to care homes earlier than otherwise would be needed. They therefore cost the state a lot more money, and I’m talking tens of thousands of pounds, than if they received support to live in their community.

This is Dementia Action Week. I urge you to speak to Shropshire CCG and Shropshire Council and to tell them that they should be funding this support. If they say they have no funds, you can tell them that by spending on the support and services I have outlined they will save several times that cost in other services.

I would like to refer you to the five Dementia Rights Statements issued late last year, and a significant element in the Dementia 2020 challenge. 

https://www.alzheimers.org.uk/about-us/policy-and-influencing/what-we-think/dementia-statements-and-rights

People living with and affected by Dementia have lawful rights under several national and international laws to appropriate health care in order to continue to live their lives as they choose. This is not optional. It is a human right.

You are a member of parliament representing people in Shropshire, and I urge you to put pressure on those entrusted with providing our health care (and paid by us to do so) to provide the funding necessary to support people living with and affected by dementia in Shropshire.

Yours faithfully,

George Rook

Chair of Shropshire Telford and Wrekin Dementia Action Alliance 

Member of the Three Nations Dementia Working Group

Facilitator of two DEEP peer groups

Living with early onset dementia

Seeing is not believng

Where the hell did I put my keys?

Where’s the mustard?

Why isn’t the tape measure in the drawer?

Have you asked these questions?

Have you got really narked by not being able to do a job that’s smole but impossible without the right screwdriver?

And you know where you’ve always kept it, don’t you!

But it’s not there. 

You ask your wife or husband, and the say they don’t know. They haven’t seen it. Where is it usually?

Have you used it and not put it back?

No. 

You must have have!

I haven’t…

And on it goes, round and round in your head, as you wind up higher and higher, angry to the point of exploding.

Your wife tells you to look again, but no you cant see it. And being told to look again annoys you because you did look already.

Do you think I’m stupid?

Sometimes you look again and you do see it. It was in front of you all the time. And you try not to admit it. But you know. You just know that it’s that dementia again. Seeing is not believing.

All your life what you see is your reality. But now you can’t trust what you see. It might be there or it might not. 

And if it should be there, but you cant see it, what else is there to do but assume someone has moved it? How else, after all, can an object move? 

If I put the screwdriver back, like I have always done, it must be there. So you must have moved it. Or someone has stolen it. Or borrowed it. There is logically no other explanation. 

And if you tell tell me that you haven’t I won’t believe you, because, well, you MUST have moved it. 

….

Lets take that a bit further.

How would you, with all your senses intact, react to something being missing? 

Yes you’d go looking. You’d check and double check. And if you didn’t find it? It must have been stolen, or you left it somewhere. And you can remember where you have been so you ring up and check. Or go back.

But what can I do? I may not remember where I have been. I may not remember putting the keys in the drawer. Or the screwdriver in the bin. Or lending my spirit level to my son. 

So if my reality tells me it should be where it always is and where I remember it last being, well, then someone has removed it or stored it in the wrong place.

So bloody well tell me or find it for me!

…

Now I don’t want to accuse anyone if stealing. Or “borrowing”, with the implication that they actually nicked it without telling me.

But it’s the only explanation. 

And that goes round and round. It drives me mad. And I struggle to resist making the accusation. 

And it sours my feelings for this oersonperson. Because I KNOW they took my tape measure.

What do I do with all this? It’s in my head. Every time I want the tape measure I think it’s been taken and not returned. 

And then when I can’t find something else I think…now they’ve taken the mustard too. 

I don’t trust people who come into my house. They’re all out to take away or move my things. 

….

So next time you meet someone who has brain disease and is suspicious and tells you someone stole their clothes, or their money, try getting into their shoes. 

Work out what their reality is. And find ways to help them understand. And if they cannot understand, divert them away to some pleasant experience or memory. 

And if you cant find what they want get another one for them.

If you do do find it, don’t tell them where it was, and that you don’t know how they couldn’t see it.

Just say, here’s another. Use this.

They’ll love you for it.

Passing on my hobby horse

Have you noticed in recent months that everyone passes on?

We don’t die. We pass on.

Sometimes you pass away, but the fad is now that you pass on.

This is my hobby horse today. 

I ride it roughly, curse it, kick it, but it just trots on calmly. Where to, I ask?

And more to the point, where do we pass on to?

If you pass away, at least it means you are gone. Don’t know here. But gone. With a sense of never returning. Of finality. 

But passing on seems more active, more positive, as if there really is somewhere you’re going.

Now, we don’t really talk about what may be beyond death. Nor about the actual act of dying.

We should.

If you really truly believe we go to Heaven, whatever that is, then yes you pass on. But make no mistake…you die first.

If you don’t know what you expect, or if you expect oblovion, then…you die. 

If you pass away, you imply a soul that moves out of your body, away. Don’t know where. But it disappears. Or just dissolves, disintegrates. Like life itself.

If you die you cease. Your body stops working. Your brain stops working. You are…no more. 

And, my hobbyhorse tells me, if we call it anything other than dying we are hiding from death.

One of the six elements of the dementia model is “dying well”. That might give you pause for thought. 

Dying well? 

I think this means being prepared in your mind, and free of pain in your body. I don’t think anyone is ever free of the pain of memories, and regrets. 

I think dying well means dying in a place where you feel at home. With loved people, loved animals and loved things around you.

I’d like to die in a wood. Preferably in spring or summer. Preferably during the dawn chorus.

But when I am dead, I don’t actually matter. It’s those still living that have feelings and practicalities to deal with. And we need to have talked about these before it happens. We need to understand what each of is needs when the time approaches.

If we ignore death because it is uncomfortable and unknown we create bad deaths.

Those we love will not know and respect our wishes. Nor will they know or understand their own.

If dying well is to mean anything we should all have prepared for death.

Spiritually and practically and emotionally.

“Dying well” in any strategy or model for dementia should include trigger points which encourage people to talk about death. Health and care staff should regularly open the subject, and when you are ready to talk you will. But probably sooner than if death is ignored and hidden away.

Faith helps a few, but most of us either choose not to believe or do not know whether to believe, in another world or a higher being, life after death or hell.

Me, I think that there is either nothing at all, or it will be good. Why would you have a loving god who sentences you to eternal damnation?

But that is the future…or not. What matters is living now – and being prepared for dying.

So let’s embrace life. Let’s s take risks. Let’s have joy. 

And lets embrace the only certainty in life…that we will die.

Why are we so white?

Why are we so white?

I had the great pleasure to travel to Nottingham yesterday to work with a small group at Trent Dementia. The travel was not a great pleasure, via three decrepit trains but two wonderfully helpful buses/drivers.

I met four lovely people, Jane, Shelagh, Jean and Ghazal. We were starting to plan an event in Nottingham to kickstart engagement between and with people living with dementia. There seems to be little going on there for PLWDs, no DEEP groups. although there is a DAA.  But I wonder how active it is as no one round the table had heard of it.

So we tossed around some great ideas, and focused down on having a number of small room meetings where people could talk about and share feelings about specific areas of living with dementia. We wanted to avoid a big auditorium type conference, as they achieve very little action usually. And people living with dementia need small groups and the chance to ask for clarification without losing track.

But then we got onto the cultural and ethnic make up of Nottingham. Four out of five of us were white and well educated and articulate.

How could we reach, and get people from, the rich mix of cultures to come to the event and any peer groups we set up? 

I understand that dementia is more prevalent in people of Asian ethnicity than white English. And they often live in a culture of keeping it hidden at home. And then, Afro Caribbean and eastern European populations? How do we reach these people? If white British people find it hard to find support, how much more difficult is it for them?

Lets go further. My friends at SAND (Safe Ageing No Discrimination, Shropshire) have told me (and the DAA members) about some of the challenges they face. The LGBT community often live in fear of coming out, of explaining who they are, when facing hospitals, care homes, and other situations where they may and often do face discrimination and hostility. 

Why the hell should a gay person living in a care home feel they have to hide their identity, the things that make them who they are? And why are they not involved and engaged in the work we do, promoting awareness and dementia friendly communities?

And I’ll tell you what, unless we white straight people, who are usually the majority in many areas in commissioning services and managing providers, go out and find and talk to these people, they will continue to be in the shadows.

And that’s plain wrong.

As with dementia, we are all different. All individuals, all with different lives. No one life is better or worse than another. 

And yet…we are such a white, straight, group of activists! We really must do better.

……..

Note: I apologise if I have in any way offended anyone in this blog.  There are of course fabulous exceptions to every thing I have said. 

I think I know what you think

Well. What a day!

I’m on my way back from London after co-chairing the morning session of the GovConnect dementia conference, Towards 2020.

It seems to have become an annual thing, revisiting the progress made towards achieving the targets in the Prime Minister’s Dementia Challenge. 

As one wag said, the platform speakers were OBEs and MBEs and a senior civil servant, in the main. Policy makers and performance inspectors.

Apparently all sorts of good things are happening around the country, across charities and councils. 

NHS England has toolkits for CCGs to use to assess the quality of their dementia provision, and to improve it where its poor. 

CQC find that around 80% of care homes are good or outstanding.

89% of emergency A&E admissions aged over 75 are asked a question to assess their cognitive status, within three days of admission. (When they are really fit and healthy and oriented.)

67% of those calculated to have dementia have been diagnosed. (They forgot that only 20% of those under 65 have a diagnosis.)

We have over 300 registered dementia friendly communities. (Oops, I meant registered as working towards…)

“Its very clear that progress is being made across all of the elements in the Dementia Challenge”, said the civil servant.

Hmm.

I was beginning to feel like a bystander at a groundhog Easter Day service.

All is well with the world. We are doing well. We’re doing great things.

I’ve heard most of it before. 

Grand words and empty statements.

At the start I asked speakers to give us evidence of what was happening. Not just tell us grand statements. Evidence. Measures. 

So we got the diagnosis rate, and the CQC figures.

We did not get any CQC evidence about the quality of dementia care provided in these good care homes, because they don’t inspect and report on that. It’s not in their five domains.

We didn’t get the number of people who receive worthwhile, personalised support after diagnosis.

We didn’t get the number of those emergency admissions that were assessed and referred on for assessment, appropriately. 

Because the data isn’t being collected. It must be out there, but no one is looking.

We were told that 100,000 staff (somewhere?) have done Tier 2 training. And that everyone whose role has regular contact with people living with dementia should have done the Tier 2 training.

Over a million people work in the NHS alone. Add other care staff around the country. Say 1.5 million? We should get there by 2040.

Meanwhile, many people living with dementia and receiving care in the NHS or Care Homes or at home are getting lousy care. And many carers are getting no support.

So how are we getting on?

I think you know what I think. And I think I know what you think.

If they asked us we’d tell them.  But that would be a little too uncomfortable, wouldn’t it?