Seek first to understand, then to be understood

I joined a group of GPs in Birmingham recently for an afternoon CPD Training in Dementia.

What a lovely group of people who made me very welcome.

I spoke about my own early symptoms and diagnosis, and then about what matters now, and what is available as support. They said I told them things they had never fully realised before, mainly that it’s about more than memory.

I showed them the new Young Dementia UK diagnosis tool for young onset dementia. Not one of them had heard about this. They were very interested.

During the afternoon there were many comments about the lack of post diagnosis support for people living with dementia. There were still elements of the old “what’s the point of diagnosis if there’s no treatment, cure or Support?” But it was said from frustration that support was not being provided.

They felt they might be raising expectations that once you have a diagnosis something will be provided to help you live with it. And it isn’t.

I made the point about preparing for a time when you might lose capacity. And doing things you might have been putting off. And the sheer relief that many feel when they understand why they have been feeling as they have for several years.

So I think and hope that this group of 25 GPs left with better understanding of what matters to us, and a fuller picture of all the possible symptoms.

But there is a massive irony in all this. and it seems to be lost on them.

Clinical Commissioning Groups choose what healthcare to provide in their areas. They commission services, from nhs providers, private providers, voluntary providers.

And who are the commissioners?



The wonderful Lansley reforms eight years ago put GPs in charge of choosing what services should be provided in their local areas. Because they know best.

I remember being told time and again that the CCG was a “member organisation”. I questioned this time and again too. What does it mean?

The answer was that all GPs in the area (for example Shropshire) were effectively the CCG. Everyone had a direct say and involvement in choosing and controlling services.

Of course, most didn’t want this.

And a curious thing happened. GPs who joined the CCG board gradually changed. They morphed into traditional commissioners. They lost what made them local and special.

They had to play the NHS organisational game, to their central rules.

So when I hear a roomful of GPs decrying the lack of commissioned support for people post diagnosis, I think…

Nothing has changed, has it?

Local decision making to central rules means…


I’ll tell you who knows what is needed locally.

The people with the disease.

The people living with dementia.

But they don’t ask us, do they!

We’ve got the evidence. We can provide it, because we’ve looked for it. The proof that the benefits are measurable and hugely outweigh the costs. Savings everywhere.

That’s why I’m working, along with many others around the country, to establish real, trusted engagement between people living with dementia and providers and commissioners.

Not the usual, formal, across the table challenging. Or brief breathless meetings which start with ‘I’ve only got ten minutes…”.


No. Let’s sit down over lunch. Let’s chat. Let’s hear each other. Listen to our concerns and aspirations on both sides.

In fact, remove the “sides” barriers.

We’re in this together for the same reasons.

“Seek first to understand, then to be understood.”

“Win – win solutions.”

Stephen Covey was absolutely right.


Self Managing dementia…the perfect oxymoron

Just picked up this up in a tweet, so here are my thoughts.


I don’t live alone…I live with my wife.

Diagnosed four years ago age 62.

I have mixed dementia.

Self management… now, I don’t like this term, or approach. Supported self management yes.

Self management is being left to get on with life on your own. But we’re all at different levels of activation and education and living conditions, so most or all of us cannot manage our condition(s) “properly”, ie in accordance with medical guidance. If each of us could follow the guidance on life style, diet, activity, we would most of us not have the conditions we now have. That doesn’t mean we are reprobates and incapable of living reasonable healthy lives. It means we’re human. And we have experiences and feelings that control how we behave.

I believe each of us needs occasional support to help us live more healthy lives…ie to self manage. It’s Public Health really. Except it isn’t!

As a diabetic I don’t receive the help I need to keep to a perfectly healthy diet, so I use pills to maintain blood sugar, and I occasionally eat a biscuit or crumpet and jam. Like last night. Because I lose the will not to! It’ll be insulin next.

Can we self manage dementia? What does it mean? Given there’s no cure it must be about activity, social engagement, diet, alcohol and smoking…do we add going to bed at 8 because we’re so tired? What do we do on days when we’re completely in a hole? Self management is just saying go away and get on with it.

(Yesterday I was told that research shows that one glass of wine and one cigarette a day reduces the risk of developing dementia!)


So supported self management is what we need. Through dementia navigators or companions, or admiral nurses when we hit crisis, and through peer groups where we support each other.

What do health professionals say to me? Don’t take risks. Do less. Don’t get tired (!). My GP doesn’t have time to discuss with me my life with dementia, unless I have a specific related issue.

And when people get further on into dementia how can they self manage anyway? I may not be able to make a cup of tea or put my shoes on. What happens then?

Self management is just saying to us, go and get on with your lives as best you can. Here’s what you ought to do, now do it if you choose. So we have a choice as a society. We either regard brain disease with dementia as something that happens, tough and all that, but it’s … life. Or we say actually, just like if you have cancer or diabetes, or glaucoma, we’re going to help you get through it, and if it’s terminal we’ll help you as you approach your death to be pain free and to have around you whatever makes you comfortable and loved.

I think you know which I’d go for.

Finally, yes of course I self manage. It’s called living as best I can. My wife helps me in some very practical ways, like looking after clothes washing and cleaning, since I just forget to do this. And she is a listening ear when I need one. But broadly I keep it inside because no one wants to hear my negative thoughts, and I don’t really want to think them either.

I am in control of my life. As long as I ignore the risk averse nay sayers. But it often is becoming a fight to keep going. It’s not just Dementia…for me it’s the other conditions I have, on top of Dementia. It all wears me out. And I have no professional support for that. Clinical appointments are short, sharp and transactional. And no one speaks to the others. So it’s like bouncing from one corner of the boxing ring to another. Waiting for the next hit to get me.

Self managing dementia?

It’s the perfect oxymoron.



Do we have any?

A few weeks ago I wrote about what I hate about organised activity groups. And I got a lot of responses from people who agreed. We really don’t like being organised to do things we don’t individually choose.

But, and there’s always a but, everyone enjoys different things, so while I might not enjoy singing songs I’ve not heard of with people I’ve never met before, around a small table, at least one person at that group did.


And I talked this week to a couple of PLWDs at our Market Drayton DEEP group who really enjoy “singing for the brain”sessions. They’ve both sung in church all their lives and they love being in a lively, cheerful choir. And of course they know just what they are choosing to do when they go.

This comes back to dementia friendly activities and groups and communities. The best things that keep people engaged in their communities, and going out and engaging, are what people have always enjoyed doing. Not usually activities organised for people living with dementia by someone who doesn’t have dementia. They think they’re doing the right thing of course, but…

So I returned to the local group I went mad over last month and had a really nice couple of hours. There were two of us living with dementia, one partner, and one younger guy who had heard of the group and wanted to talk about symptoms that a relative might be showing. As soon as we got onto talking about living with dementia it became really interesting snd personal. We were no longer trying to be pleasant and think of things to talk about with strangers. We had common ground, common cause.

It became what I would call a good support group, allowing us to share our thoughts, our feelings and our difficulties. How do you meet people when you’ve recently moved to a new area? What do you do if you think a relative might be showing signs of dementia? What’s it like feeling isolated?


And at the Market Drayton group we talked about how difficult it is to meet people who don’t know you when you know you can’t keep a conversation going as they expect. That’s one of the big reasons for social isolation. I feel it too. When you can’t keep up with a conversation, and you get stuck finding a word or thought, there’s a long pause…a lot of long pauses…and others can start to wonder what’s going on. And get embarrassed. You can’t have the casual easy conversations of the past, beyond the predictable, well remembered phrases.

It takes time, and hard thought, to talk to people you don’t know well. And to listen to more than one person speaking at the same time. So we opt out.


I can do focused meetings, when I have prepared, I know the background, the terminology, and it’s on my terms. I can’t do the others. So parties and most restaurant meals are out. One of my strategies is to sit at the end of a table so I can be quiet, observe, and not feel embarrassed and lost.

We talked about driving. Two of us are going through the DVLA renewal process at the moment. I’ve had to complete about ten forms, with more coming in by post as they wade through my various diseases, many of which might…might…have an impact.

When do you decide to stop? Probably before they decide for you.

It’s when you have one near miss too many. When you can’t trust yourself to remember to take extra care, have that extra check. When you look in the mirror and see a car up your exhaust and you wonder where it came from. But it’s a huge step away from engagement and independence to stop driving. It’s what we all fear.

This coming week I’m going to the first meeting of a new group called PALZ, in Shrewsbury. PALZ stands for professionals with Alzheimers, and is the name of a number of groups in Australia. A local solicitor (for the elderly) has started this group here, and is aimed at providing more formal meetings for those people with Dementia who may have been used to formalities in their working lives. I have had several debates about what “professionals” covers, but basically it doesn’t matter. It’s just another, different style, group. It’ll suit some not others.

One commissioner here thinks it’s exclusive and cliquey. I don’t agree. I think that every group or activity suits different people. And the more groups we have the more people living with dementia will find something that’s they enjoy. What’s more, no one will be turned away! Everyone welcome. (It’s Tuesday 20th, 10.00 at the conference centre at Royal Shrewsbury Hospital.)

So my conclusion?

We need more and more peer groups. By stage not age.

I don’t care whether they are for ex-miners, or servicemen, or lawyers, or accountants, or housewives…labels are irrelevant.

Just please start up more groups.

It doesn’t have to take much or any money. Just time and commitment and willingness.

It’s what social prescribing should be all about. Keeping us all engaged in our communities. Avoiding loneliness and despair.


And it’s what social and health commissioners should be commissioning. Cheap but hugely beneficial. Cost effective. Reducing GP visits, A&E attendance and admissions, drug use, and additional co-morbidities.

I understand that Alzheimers Society is withdrawing from organising groups like singing for the brain and support groups. They’re also withdrawing their staff support for Dementia Action Alliances. They may have good organisational reasons for this. But who is going to facilitate them in the future?

There are always people in communities who want to run groups and to take local action, but these are not enough. There is a time bomb of frail elderly ill health that social models of care can do much to alleviate. But we continue to spend on traditional health care models in acute hospitals. We need to radically redesign out of hospital care to provide the preventive social care and activity that keeps people independent for longer.

Leadership? Innovation? Change agents? Balls?


Do we have any out there?

Let’s make Britain Great again!

A world without diabetes

Diabetes is a disease that is invisible. The disease is hidden, often not diagnosed until it has caused damage.


Type 2 diabetes is often brought on by being overweight, eating an unhealthy diet, and too much of it.

The UK spends around £9bn a year treating people for type 2 diabetes. (£1bn for type 1.)

The total direct and indirect costs of type 1 and 2 diabetes is around £24bn a year.

It can usually be avoided by having a healthy lifestyle…reasonable exercise, good diet, healthy weight.

The results of diabetes include loss of limbs, loss of eyesight, heart disease, renal disease, extensive neuropathic pain.

I wish to propose that this disease, which is invisible and to a large extent avoidable, should not be treated.

The direct health care savings of £10bn could be used elsewhere to improve care and introduce new, expensive drugs and treatment, for example for cancer. After all, I’m sure we all agree that cancer is a disease that must be eradicated, and that anyone developing cancer should get every possible support and care.

We heard Lady Tessa Jowell speaking passionately from personal experience about this need for more investment in cancer treatment in the House of Lords just yesterday.

My proposed new approach to diabetes would provide a powerful lesson to the population that if you don’t live healthily you will die. If, on the other hand, you have cancer you will be taken care of.

There would soon be very few amputees and partially sighted citizens, with associated savings to society. Tooth decay would reduce dramatically as sugary foods became a thing of the past.

Union jack: hugely symbolic.

And by devoting resources to cancer treatment society would gain extra economic activity and resultant higher tax receipts as citizens continue to work into their late 60s and 70s.

Citizens would live well with cancer, rather than dying painful, unnecessary deaths. Citizens’ learned life and job skills and knowledge would not be wasted. Families would not be torn apart.

So, please, let’s stop treating diabetes, and devote our resources to cancer.

After all, we don’t support and treat people living with dementia. As a protected group under disability law, it is wrong, indeed illegal, that one group is singled out for prejudicially inferior care.

But the equalities laws clearly do not apply to disease groups that are invisible, like mental Illness and brain disease. So let’s add diabetes. Society would be better off.


Let’s make Britain great again. No cancer, no diabetes, no dementia.

If you can’t see it, it can’t exist.


[Disclaimer: for the avoidance of doubt, this is satirical, not to be taken literally.]

Rights based care?

When will brain disease get parity with cancer?

I’ve written before about Dementia not being a mental illness, and arguing therefore that dementia should not come under mental health providers.

The memory service. Aargh. I hate the name.

Equality and Diversity law requires that people receive equity of access to healthcare and support regardless of ethnicity, gender, disability, sexual alignment, etc, ie the nine protected characteristics.

Neither should equity of access to healthcare and support depend on where you live.

There will be differences in delivery models, based on geographical location, community assets, and funding, not to mention other resources like staff and transport.

But given that there is a national funding formula (not perfect but consistent) for health and for social care, why do we not have consistent models of care and support?



Why do we have some areas with admiral nurses, and others without?

Why do some areas have six week waits for assessment by the memory service, and others sixteen weeks (and more)?

Why do some CCGs spend five times more than others on services for people living with dementia?

Why do CCGs and providers not carry out full Equality Impact Assessments on their commissioning and services and find that actually people living with dementia and their family carers are often implicitly discriminated against?

Why, when the number of people living with Dementia is rising dramatically, when well over 25% of patients in hospitals live with dementia and have stays of 21+days compared with 4-7 days for others, why are so few people in CCGs doing anything positive and realistic to provide better care and support?

It’s an epidemic.


It’s costing the country around £23bn a year.

Care homes are going out of business so less places are available for those who need specialist care. Or just somewhere they can be looked after.

During this NHS crisis (summer and winter…it’s continuous) specialist staff in Dementia teams are being taken away from their work to provide cover in ED and on wards, or corridors.

Guess what? Patients living with dementia, get less good care, have worse experiences and worse outcomes, and more of them end up in care homes when they could have returned to their own homes.

Are staff being taken away from cancer teams?

Are patients being denied chemotherapy because staff have to go to ED?

No, and rightly so.

Dementia is everyone’s job! In and out of hospital.

But we seem unable to see this and respond to individual patients’ needs. We treat their immediate disease, their cancer, their prostate, their hernia…but we lose sight of the other bits that make them who they are, including their brains!

And we seem unable to grasp the essential irony, that if you don’t look after the person with dementia as they need to be looked after, they will “go wrong”, and block your beds! And cost you a lot of money which you could have avoided spending.

In these days of STPs, with footprints that are bigger than CCGs, and which will probably take over from the CCGs soon, and become great big accountable care organisations (ACOs), what will happen when one half of an STP provides admiral nurses, while the other half doesn’t?

That will be straight out of the Equality and Diversity playbook!

Politicians and NHS national leaders talk about national strategies, locally delivered. National models tailored to local needs.

The current NHS architecture was set up in 2010 because apparently GPs knew the local needs best and would commission services in accordance for their populations.

So why does one set of GP commissioners (CCG) in Telford (for example) identify a need for admiral nurses, and dementia support workers and dementia companions for all its area and pay for them, while an older, larger population next door apparently does not have that need so the CCG does not commission them (in Shropshire)?


In actual fact Shropshire includes around three times the number of people living with dementia than live inTelford. Where does that leave local GP knowledge of local need?

Oh and Shropshire CCG has just not replaced its commissioner for dementia services. That’s a great demonstration of commitment. Not.

The law says people living with disability (including long term conditions such as dementia) must not suffer discrimination as a result of their disability. We must not be adversely and disproportionately affected by commissioning decisions over our health care, compared to other people without the disability. Or compared to people with the same disability living elsewhere, I would suggest.

I wonder whether this can be legally challenged? Why should one CCG (and I’m sure there are many others) choose – and it is a deliberate choice – to ignore a large group of several thousand people living with a brain disease?

Not only ignore, but actually decide that their lives and their “suffering” are unimportant and they do not deserve support and care.

If they chose to ignore people living with breast cancer, or brain cancer, and to withhold care and support, what do you think would happen?

If it’s rationing because CCG staff cannot reorganise/reprioritise funding and spending choices as health needs change, say so. But it’s still illegal.

It’s discrimination.

It’s not fair. Not right. Not legal. Not humanitarian.

When will we challenge this?



These are the five Dementia Rights Statements.

We have the right to be recognised as who we are, to make choices about our lives including taking risks, and to contribute to society.  Our diagnosis should not define us, nor should we be ashamed of it.
We have the right to continue with day to day and family life, without discrimination or unfair cost, to be accepted and included in our communities and not live in isolation or loneliness.
We have the right to an early and accurate diagnosis, and to receive evidence based, appropriate, compassionate and properly funded care and treatment, from trained people who understand us and how dementia affects us. This must meet our needs, wherever we live.
We have the right to be respected, and recognised as partners in care, provided with education, support, services, and training which enables us to plan and make decisions about the future.
We have the right to know about and decide if we want to be involved in research that looks at cause, cure and care for dementia and be supported to take part.

I might not smile

This is for Christmas and for everyone living with dementia

I’ve got the Kings College festival of lessons and carols on in the background.

I’ve wrapped a few presents, decanted the chilli and garlic oil into tiny old fashioned bottles with those porcelain tops that flip down on stiff wire. Like lemonade bottles used to be.

There’s tonnes of food in the house for the next week. And drink.


And yet…

That familiar phrase…

And yet, I sit here with tears welling, just wondering, thinking…

Christmas at home when I was a child. Drinks next door. Go to bed excited. Turn the light off. Try to stay awake for the door handle rattle…

And then at five o clock jump out of bed and see the door handle pointing up from the weight on the other side. Quietly, ever so quietly, open the door and lift off the stocking, thick knitted, with an elastic garter sewn on to hold it to the door handle.

Elastic garters…long socks and shorts at school. It wasn’t pink and rosy and great…it was just school in the early sixties.

My tears are not for the past. It was not wonderful. I remember the November smog in Birmingham when I could not see more than two feet. Walking home from school four miles. Bumping into trees. School was a trial that lasted twelve years, twelve unpleasant years that moulded me and my values.

And I still get fund raising and commemoration and old boys’ dinners letters through the post. I hated it. Yet they still try to include me in their sham, prejudiced, entitlement world.

This Christmas seems more than ever before like the leaving of something. Here I am, dwelling on a past which really was not good. And yet, I will never recapture the Christmas anticipation and joy of childhood.

I am not alone. Nor are you. But we may be lonely. We may not want company, but we may miss it. We may have little past family left, or none at all. We may, like me, have siblings who don’t communicate, and might be happy, sad or dying. I really don’t know.


But Christmas is a kaleidoscope. All those memories and feelings are squeezed together prismatically, misshapen, colourful but unrecognisable, and just…there. Like a geezer, bubbling away in sulphurous mud, belching, farting out uncontrollable feelings and memories.

It is just too much to control. The lid comes off once a year. Blows up in the air, clatters to the ground, and leaves us staring wide-eyed into our memories and our feelings.


And it hurts.

It just hurts.

And that’s why tears come.

Don’t look, don’t feel, don’t wonder…just talk, eat, drink and be…merry?

Kill the time with booze, telly, games, presents, wrapping paper, food and more food…

That’s what we do.

But actually, Christmas on your own is eye opening, soul opening. Strip away the games and pretences, the hide and seek, the strategies to avoid thinking, and what do you have left…a void. A crevasse.

At the bottom of which are your memories of times past.

And if you have a terminal illness that will either kill you or limit your life, and gradually rot your brain or other organs, it is probably a good thing to have this time to reflect, and weep, and grieve for what you are losing.

It’s a difficult time. Because we have little hope. We know our time is limited. We know the next year will be a little more distant, isolated, removed.

So, please, don’t try to make us all happy and cheerful because, after all, it’s Christmas everyone!

Let us reflect and think and just, well, be quiet.

Happy Christmas and new year. But I might not smile.


What matters to me?

What matters to me?


I asked members of a DEEP group recently if they could answer this question? Or if anyone in Health care had ever asked them.

Responses were predictable. No, no one ever asked them what mattered to them?

Me neither. Never.

But nor did they understand why it would matter when they’re talking to a Dementia Nurse or their GP. It was as if they were embarrassed to talk about those tiny little things in their lives. Why would they take up a professional’s time with these little details. They’re just personal to me.

Yes and no.

We may not think any of this matters at the moment. We get pills, we get pep talks, we are told to avoid risks. What’s a care plan got to do with me, I just live. And get on with it.

But wait a moment.

How many people have been given drugs which make them feel awful? I certainly have…blood pressure meds that debilitate me for hours, and dear old donepezil, which makes me feel so bad I have to lie down all day…if I take it in the morning.

Did anyone offer me a choice about these? Well yes, to a point, but not with any discussion of how they might debilitate me. And how to get round that.

I prefer to have higher blood pressure in the day so I can carry on living as I wish, but it’s taken quite a long time to get to this. Because I and medical staff did not give any real weight or thought to what matters to me.


Care plans, if they exist, are just bits of a screen (print) that include our diseases, medications, and medical history. In other words, it’s our doctor’s or our nurse’s record for their use. Very useful if I’m admitted as an emergency, but useless for helping me to live as I choose.

Apparently NHS data show that 85% of Patients with long term conditions have care plans.

That’s bollocks, pure and simple. They are not care plans. Just lists.

So let’s start again.

Do we have shared care plans which we have co-designed with the medical and social care staff we work with?


What should a care plan be?


A plan for how I want to live (and die), now and in the future.

Who is it for?

Those who look after me when I am no longer able to. And those who look after me now, when I want my life to continue as I choose.

Every health or social care worker who provides support or treatment should read it and be able to contribute to it.

And I should own it and carry it with me, or give access to it if it’s stored somewhere, virtually or on paper.

This stuff is not new. But it’s not understood and applied in practice.

Have a look at this short cartoon, one of several put up on Youtube by Helen Sanderson, about what matters to you.

And here goes with a list of some of the things that I’d put in my plan. Just the ones I can share in public, of course. I do this to make people think about the small things that matter to me, that professionals cannot know unless they ask and take time to find out.

They make the difference between living as I choose or just existing; being positive even when feeling ill, or feeling hopeless and helpless. Going to bed thinking it’s been a worthwhile day. And getting up with an inner smile.


I like a pint size mug of leaf tea, without milk or sugar. Never tea bags.

I like a shower before going to bed because my feet feel less painful and I sleep better.

I like walking alone with the dog in woods or fields, just being present, with my camera, listening and looking.


I like to sit for an hour with tea and the dog reading the Guardian on line after I’ve got up, before starting the day, with a window to look out of.

I like to cook, and I like strong tastes and spicy food.

I like to sit in the garden with a mug of tea, or beer in the evening, just listening and watching, browsing twitter and email, writing.

I like to wear crocs, sandals or, better still, no shoes.

I like espresso coffee made with an aero press.


I like to make and eat proper, artisan pizza, not shop bought stuff.

I like to walk and garden, and can’t if I take blood pressure pills in the morning.

I like using my brain, thinking, analysing, challenging, and the stimulation of working with (most) nhs staff.

I don’t like overwhelming noise, bright lights, people I don’t know but have to talk to.

I don’t like interruptions or instructions when I’m cooking.

I like two pillows, and untucked sheets over my feet.

I like cutting the grass.

I like spending time with my children and their partners.

I like sowing seeds and growing veg and flowers and trees.

I don’t like having to talk to people when I’m out with the dog.

I don’t like the table being cleared before I finish eating. (I eat slowly.)


I like lots of windows, and the curtains left open at night.

I like being greeted with a smile and a name when I meet Health staff who look after me.

I don’t like being called “luv” or “darling” or “petal” or “mate”. My name is George.

I like to have time to ask questions, to think things through, and to find to a conclusion, before leaving appointments.

I like to tinker in the piano from time to time.

I like to write… letters and blogs, and tweets and things.

I like to choose my company, and to talk about things I’m interested in and know about, not always what someone else says.

I don’t like listening to people with closed minds and uninformed prejudices.

I like eating kidneys and liver. And smoked bacon of course.

I like fresh brown bread, especially if I’ve made it.


I could go on. But you get my drift?

These are what matter to me.

I leave medical care to medics, but I want to make the choices from their advice so I can go on living as I choose.

So always, always ask…

What matters to you?

What matters to me?


Drawing back the veil over My Hyde

Drawing back the veil over My Hyde.

I wrote this yesterday and have been wondering whether to publish it. It sounds as if I am terribly depressed, but that’s not it. It is a tale of two halves, growing further apart. And of bereavement…



I’ve got brain disease, I’m told.

My symptoms are described together as a dementia. Well, mixed dementia actually, labelled Alzheimers and Vascular.

You meet me at a conference or a small meeting and you probably think “really?”.

Like many others, I can focus my brain on the matters in hand, as long as I have prepared. And as long as I am not tired.

So I’m a cheerful chap to most people, talking cheerfully about living with dementia, smiling away, saying hello to everyone around.

And I do really enjoy doing that. I get immeasurable satisfaction and pleasure from giving talks, chairing meetings, and just being around positive people who also want to make a difference.

But you don’t see me at home.

I’m reminded of the Chris and Jane Roberts Panorama film. You meet Chris, when he’s at an event, or over supper afterwards (curiously often in Weatherspoons), and he’s also cheerful, and talkative. But at home we all saw how he is different.

When I go home I’m also different. And in the last couple of months I have become aware that my symptoms have become more socially isolating.


I can’t do noise, and my lovely Lupin’s barking really crashes my head at times. It is overwhelming. Add another dog or two when friends come, thrashing playfully around, under my feet when I’m cooking, and I just can’t stand it. So I shout. And use foul language.

Well I’ve always had a colourful vocabulary, but I’m far less able to control it in social situations now. It’s like before I started Donepezil, three years ago. That made a huge difference, and I took back control of my self control. Now though it seems to be going again.

In a meeting when someone is speaking off the subject, or telling me things I already know, or just being really boring, I get intensely irritated and impatient. I start slapping my hand on the table. I want to shout at them. I haven’t got time to listen to you if you can’t do a decent presentation, or have nothing interesting to say.

And so, at home, I find suggestions about how I might do something, like cooking, or hoovering, or some other mundane thing, intensely annoying. I feel, often wrongly, that I’m being criticised, and not being allowed to be who I am, and make my own decisions. And I shout sometimes, and I upset others around me.

I know some good friends who came to stay a couple of months ago found me difficult to relax with, and it’s taken me all this time to really understand why.

Why, indeed, would people want to come and spend time with a miserable, angry, foul-mouthed person? Even friends have their limits!

I am seriously impatient at home. If, for example, I can’t get my walking boots laced up at the first attempt, I just lose my temper. I shout. I’m furious.

I have simply lost whatever it is in my brain that is the dam holding back that fury, and it explodes out.


So here comes Christmas. Lah de dah.

Four days with family…and I do love them all and love to see them. I’ll want to cook, because I enjoy doing that. But only if no one interferes at all. And by the time I get to the table I’ll be tired and fractious, especially if guests aren’t all sitting ready as I serve. And I’ll sour the general spirits.

Perhaps I should simply go into another room and preserve my energy and state of mind. Keep out of the way.

I’m not the person I once was, and it’s hard to accept.


I am writing all this not out of a sense of self-pity, but because I am certain that there are lots more people who have the same sort of experiences and difficulties. And most people don’t know. I live by the rule that if I experience or feel something, it’s pretty certain that other people do too.

It’s not just Christmas, though this season does adversely impact many of us. It goes on and on. We get tired. We feel we have to go on smiling and ignoring our inner feelings of frustration and helplessness, as we watch others do what we used to do seamlessly.

The best social events now are short and small and quiet. I’m only now beginning to understand the need for that quiet room at good conferences, where you can just sit and be…quiet.

I don’t know about others, but I feel huge pressure to be cheerful and chatty when friends and family are around, even when I am not feeling like it. I’m afraid that if I’m miserable they won’t want to come back again. I’ll be just a person whom they’d prefer to avoid.

There is this conflict: is it my responsibility to take whatever actions or strategies I need to in order to be nice, cheerful George, or is it other people’s responsibility to change how they behave and what they do, to help me retain my self?

When I visit my GP I usually become cheerful George again. It’s as if I feel I have to cheer him up, and not load him up with my difficulties. How stupid is that?

In any case, a GP is not the right person for this type of conversation. An Admiral Nurse, yes. But, of course, we don’t have them here! A counsellor? Nah.

What about the memory service people? Their risk aversion is stifling.

I have a terrible distrust of most health professionals I meet. They may know their professional medical stuff, but they really don’t get dementia and its effects on people. So if I get invited to an annual health review, do I go? No. Because it’ll be a practice nurse who has no idea about dementia and who will simply say let’s do a blood test. Oh and you know about diet and alcohol so I don’t need to tell you that!

It has happened several times. So I don’t have any real faith left there.

I’ll go on with my thoughts and conversations with myself, and try to work through these things. It’s a lonely place at times, and it’s going to get worse.

And I’ll continue in January to give talks and go to meetings, and organise DEEP groups.

Because that’s what makes life worthwhile at the moment.

In the next three weeks I’ll have time to reflect and recharge. And maybe I’ll be able to draw the veil across on Mr Hyde once again.




A Good Year?

Time to reflect.


What have we achieved? In Shropshire and wider afield.

There are now just over 12,000 dementia friends in Shropshire, Telford and Wrekin.

Our DAA has some 60 member organisations.

There is a new DAA in Newport, and lots of signed up supporters.

Ludlow and Oswestry are about to launch DAAs, and Whitchurch will soon have one next year. All down to a few wonderful, committed, passionate people.

Telford and Wrekin CCG has committed to rolling out the Dementia Companion model that we all co-designed two years ago, so that when people are diagnosed they are contacted and supported as much as they choose throughout their journey with dementia. The model is now working in Newport.

Shropshire CCG will be piloting this role in Ludlow and Oswestry early in 2018 for a year.

Memory service (agh, how I hate that label!) staff are now arranging sessions in some GP
Practices to meet people with cognitive impairment and diagnose the more straightforward cases locally, in places that people know.



There are four peer (DEEP) groups in the northern half of Shropshire for people living with dementia to meet informally and regularly.

Diagnosis rates are up to 70%.

And yet…and yet…

How many people living with dementia actually access any meaningful support?

I’d say no more than 300 in Shropshire.

DEEP peer groups, singing for the brain (being phased out?), Dementia cafes, art and craft groups, church groups…all good things. But reaching very few.

Alzheimers Society Support workers providing advice and signposting to those who enquire.

There are 3,000 people over 65 living with dementia in the county. Another 240 under 65, for whom the diagnosis rate is an appalling 25%.

So let’s estimate that 10% of people living with dementia in Shropshire get meaningful support to enable them to continue to live as they choose within their communities. And I’m probably being generous.

Yes, all of us with a diagnosis will receive a visit a couple of times a year from “memory service” staff. We’ll be told to minimise risks, and we’ll be given a care plan that we’ve had little input into, and which we have not agreed before it’s sent to us in the post.


When families are in distress in Telford and Wrekin they will get great support from the Admiral Nurses there. But Shropshire doesn’t commission them.

The Dementia Companion role will provide invaluable support and advice and a bit of handholding to help people remain living their normal lives in their communities, engaged, doing things that they want to do.

A diagnosis does not and must not change how we live. The brain disease will, but not the diagnosis. And to counter the negative effects of the brain disease we do need the sort of moral and social support, as well as practical help, that peer groups and dementia companions provide.

We have some wonderful NHS staff working to improve the health care that people living with Dementia receive, in hospital and out.

But there is not yet an engrained cultural and professional acceptance that dealing with Dementia is everyone’s job. That you can’t just appoint a Dementia lead and a few (excellent) HCAs and tick the box that says you’ve dealt with dementia.

It’s everyone’s job!


Training for health care staff is paltry. It may be included in induction for new staff, but it’s less than an hour. It’s skimpy coverage of the Butterfly Scheme and John’s Campaign carer passports. Because that’s all the managers will allow time for.

A few staff do more detailed training…hmm, 1%, perhaps 2%.

There are places of excellence, where – guess what – one or two staff are so passionate they take the rest with them, usually fighting against managers rather than alongside them.

And behind all this work is a small group of people, many living with dementia, who are becoming more and more involved in, and confident in, campaigning for better support services and better health and social care.

campaigning with a small c.

It’s not headline grabbing. It’s not shouting (usually).

It’s being present and talking and challenging.

It’s travelling…often without expenses…to meetings and groups to provide the voice of the people for whom services are provided…or ought to be.

Nothing about us without us present. Please.

It’s telling professionals about the reality of loving with dementia that they neither see nor feel, because they can’t. And because they don’t often ask.

It’s time that social and health care commissioners and providers fulfilled the legal, statutory and moral rights of people living with dementia…


  • “We have the right to be recognised as who we are, to make choices about our lives including taking risks, and to contribute to society. Our diagnosis should not define us, nor should we be ashamed of it.
  • “We have the right to continue with day-to-day and family life, without discrimination or unfair cost, to be accepted and included in our communities and not live in isolation or loneliness.
  • “We have the right to an early and accurate diagnosis, and to receive evidence based, appropriate, compassionate and properly funded care and treatment, from trained people who understand us and how dementia affects us. This must meet our needs, wherever we live.
  • “We have the right to be respected, and recognised as partners in care, provided with education, support, services, and training which enables us to plan and make decisions about the future.
  • “We have the right to know about and decide if we want to be involved in research that looks at cause, cure and care for dementia and be supported to take part.
    I want to say a huge thank you to everyone who has contributed so much to raising awareness and improving the care and support that people living with dementia get. You’re unsung heroes.

And everyone else? You commissioners and providers and managers and doctors and everyone. You shopkeepers and bus drivers, councillors and everyone. You can all do something to make life better.


So, in 2018, what will you do?

It’s not just about memory!

This is a talk I gave yesterday at a conference entitled 3D Research: Dementia, delirium and Depression, in Stafford.


I was diagnosed with mixed dementia three and a bit years ago, aged 63. I had asked my gp to refer me in both of the previous two years, but he had refused on the grounds that there was no point because there was no treatment or cure. The third time my wife and I insisted.

Having an early diagnosis of young onset dementia made sense of my recent life. Increasing confusion, occasional disorientation, tripping on steps, forgetting things, being unable to see things in front of me when searching for them.

Having a diagnosis also meant that my wife and I could plan for later years, by doing powers of attorney and separating our bank accounts.

And we bought an elderly camper van and toured France one summer. Something we had originally planned to do after my wife’s retirement in a few years.

Most people don’t imagine I have dementia when we meet for short periods. I can have good conversations if I control the subject. I just find it hard to answer questions or comments I’m not expecting. I have to tune in to a subject to find it in my brain. I guess I’m finding new neural pathways, which takes time and effort and sometimes they don’t work. It can be very tiring.

Getting a diagnosis has also brought me to meet lots of new friends. I’m not the only person living with dementia to see it as a sort of blessing in disguise. At least in the earlier stages. We’re a bit of a community. We understand each other. We support each other.

I have started two peer support groups in Shropshire, under the flag of DEEP, the Dementia Empowerment and Engagement Project. There are nearly 90 of these groups around the country. They are usually small groups of people living with dementia, sometimes with family carers, sometimes without, who meet in a cafe or pub for a chat over a cup of tea or a pint.


My preference is not to have family carers present. I have seen plenty of occasions when the person with dementia never gets to finish their sentence because the carer jumps in. Or when the carer makes the choice of drink or cake, on the grounds that “she always has that”.

And I have a lady who comes to our Shrewsbury group who after four meetings on her own now says whatever she wants, puts her own copious amounts of sugar in her coffee, and laughs a lot. And of course tells us that “he never lets me do that”.

We become very quickly disempowered and infantilised. We need time to get our thoughts out, and paper and pen to write things down before we forget them. We might spill things sometimes, but so do you. We might choose to wear some pretty wacky clothes, but what’s the harm? We might even eat unhealthy food! Well what on earth does it matter?

What matters is that we go on making our own choices, that we live as we choose. That we meet others, have a laugh, get on the bus, do what makes us smile.

Last week three good friends stayed with my wife and I for a few days. We had a staycation holiday at home. With three dogs as well. I’m still reflecting on how they saw me, and how I managed the situation.

I don’t have an image of myself as a person who’s confused or irritable, who needs to clear the decks. I wonder what others see when they are with me for days.

I didn’t manage the situation well. When your brain slows down, and parts really work pretty badly, it’s hard work processing the incoming data. The textbooks describe it as too much stimulation. To me it’s noise. Just noise.

I can cope with it for a day, maybe two. But then it just wells up and up.

It’s the noise you hear when a radio is badly tuned. It’s the noise you hear when lorries and cars and motorbikes with holes in their exhausts drive past on busy roads. It’s the noise that makes me take my head in my hands and scream. Because I can’t cope with it. It screams in my head.

Noise from emptying the dishwasher. Noise from dogs barking. The kitchen cluttered with glasses, wrappers, plates and food, when I’m trying to think through the sequence for cooking the meal.

And people saying things that I can’t quite catch because I’m not tuned in. And I have to ask “what was that?” Several times.

You know the glottlestop? That is a really undervalued part of language. When you’ve got failing hearing, and your brain can’t process stuff quickly, absence of glottelstop is a disaster. It turns English into a foreign language.

Same with plosives and sybillants. Words are no longer words, just sounds that I can’t cue into.

Forgotten becomes forgo…e. How much do you want becomes How mu d y wa.

And there is no finer way to irritate your partner than to continually ask her to repeat what she said.



The biggest unmet need is for Peer Support. People living with early to moderate stage dementia get almost no support. I worked out a couple of years ago, for the NHS Citizen project, that no more than 5% of people living with dementia in the community get any real, meaningful support. They may be visited every few months by an outreach nurse, but that isn’t the support that makes their lives better. It’s more to do with risk management by risk averse mental health services.

Oh George, are you sure you should be doing that still? Perhaps you should do less now. Avoid getting tired. How do you find getting dressed?


Sorry, what we want is friendship, chat, exercise, brain activity, fun. And by brain activity I don’t mean organised games, and facilitated cognitive stimulation. Nor Dementia cafes inhabited by later stage people.

We want stage specific groups of our own choosing. In our everyday localities and communities. Meeting people who become friends who share our experiences.

We want to join in activities with everyone else. Go for walks or go singing with able people who have a little understanding but who treat us like just, well, people.

These things are not expensive to organise.

Lastly, I read more and more that people living with long term conditions should have an agreed, shared living plan. It’s actually usually called a care or management plan.


I asked my GP a while ago about this, and he turned the computer screen towards me. That’s it, he said, ie my summary Care record. My current medical conditions, medications and allergies. That is not a living plan.

My Community outreach nurse sometimes sends me a printed template document after our meetings which is called a plan. But I haven’t contributed to it. It’s what she has said.

When oh when are we going to put the person at the centre of everything we do?

When are you going to ask “what matters to me?”

One last plea…

It’s not just about memory!


The service that diagnoses dementia, or as I prefer to call it, brain disease, is called the memory service. The memory service.

I and thousands of others run Dementia Friends information sessions where one of our key messages is that Dementia is not just about loss of memory.

We must stop perpetuating this myth. Everyone with a brain disease has different symptoms, different changed behaviours. It’s about disorientation, fatigue, word finding, sensory changes, visual confusion. It’s not just about memory.

Please please please change the name. I know you think people will be frightened if they are referred to a Dementia service. But we need to call dementia dementia, not hide it away.

We call cancer cancer nowadays, and people are a little less frightened of it.

Let’s get Dementia out there, so everyone knows about it. We need our communities to accept and understand dementia. And to enable people living with brain disease to continue to live as well as we can and however we choose.