At 74 I look around me and try to evaluate the world I live in. The world young people face and will have to struggle through.

My early university and working life was seemingly easy enough. It was a Britain of class conflict, coming to terms with a century of profits grown on the backs of the working class, and poverty. It also was emerging from two shattering world wars.

Increasing wealth gradually moved down the social ladders. Housing, leisure, education, health all improved. New found freedom to be different, new and pop, exhibitionist…and sexual freedom…radically changed the world I lived in.

Our standards of living rose, and our workplaces improved. We began to see glimpses of release from the drudgery of just living and working.

In the 80s the IT revolution took on momentum. Huge 286 computers and monitors became smaller and faster. The internet developed. I remember teaching children to use word processing and early email. It was exciting. I enjoyed learning this new digital stuff.

But digital development outpaced our human ability to control it, or to keep it harnessed to our real needs. Somehow in 25 years we lost ourselves in digital hi-tech development that had no purpose other than to make a few people very very rich, at the expense of 99.9% of humanity.

And we allowed it to happen!

Our new world is one of contrast and division. Have or have not. Rights…to what? Everything and anything I choose.

We are no longer a society, a community of ant-like people all working for the good of the whole community. We are all individuals with our own rights and our own opinions, and we all think we are RIGHT.

We think it acceptable to tell lies if that gets us what we want.

We think it is fine to insult people we don’t even know over social media.

We think that anyone who is different from ‘us’ is bad.

Our young people grow up glued to their social media tools, phones that allow them to paint themselves into tribes they rarely if ever meet in person.

They are fearful of being sacked from their tribe. They are frightened that if they don’t give immediate replies they will be assumed to be outsiders, enemies, and even attacked.

It is so easy to slip into this world of hatred and fear and pretence. To accept whatever you read as ‘right’ or truth, and to then repeat it onwards in the hope of being popular, of being with the majority.

Younger people have lost their independence, their character. They have become plastic followers of influencers, who themselves use fear and anger to keep their place at the top of their tribe.

How on earth do you ever find out who you are, what you believe, your values, if you are constantly bombarded by messages from around the world about other people’s usually false views and opinions?

How do you live values of responsibility and truth when all around and above are lies and anger and poverty and huge wealth?

I will not be sorry to leave this awful, hellish world. I try to keep away from all the nightmare of blind selfishness. I try to avoid people who suck the life out of me…

Try a little exercise in humility. It’s the thinking and imagining process a writer might go through to work out characters.

Sit in a public place, perhaps a station or a library, or a GP waiting room. Look round at the other people. Do you know who they are?

What is their home like?

What did they have to eat yesterday?

Why are they wearing those clothes?

What might they be looking forward to doing later in the day, or tomorrow?

Why are they there?

Where were they born?

Did they get a reasonable education?

Do they look frightened or exhausted or full of joy? Why?

We don’t know what is behind the faces of people around us. We just assume. And when we believe that anyone claiming benefits is a scrounger, ask why they are claiming benefits. Yes they might be dodging work, but they might not have the capacity to get or hold onto work. They might have had a terrible day or week. They might have children who they cannot or choose not to look after. They might have been attacked by a partner. They might be homeless.

They might be YOU, one day.

Ask all these questions. Don’t assume anything.

When you are told that foreigners should not be in the UK, ask yourself what you would do if you lived in fear for your life, or in dreadful poverty and could see a better life in another country. Would you try to move?

Ask yourself who would staff our health services? 55% are non white British. And don’t say well that’s different! Because it isn’t. Carers for US when we get old and infirm are largely non white British. We all depend on each other.

Use your imagination and empathy to walk in other people’s shoes. Don’t just rush to judgement.

What right does any of us have to judge others? We live our own lives, and every life is different.

I feel very sickened at all this in the sickening world.

I need to write.

After three weeks of sub zero cryotherapy in my brain it is time to shake myself off. I feel dull, faint, distant, drugged – although I am no more drugged than usual – and I must wake the dead. I quite literally have to get blood coursing through my brain again!

At UK Congress this year there was a session on Namaste care in dementia. Now I have to admit that I have always been a bit off about Namaste. Bit too touchy, feely, namby, pamby, non-specific? Just a bit of herbal odour and light displays?

But this time it made sense to me.

Funny how now and then thoughts coalesce and form a new shape. Like a painting coming together as shapes and shadows are added, you just find the centre of the spider web of your thoughts and memories.

Today I am thinking about the use of antipsychotics for people living with dementia, because later this week I am speaking about it with some experts (I think). I thought I ought to do a bit of research first, as my knowledge of antipsychotics is very limited. I just know that they have been/are used too frequently on people who don’t behave themselves!

Here in Shropshire the rate of GP prescribing re dementia seems to be fairly low…good. In some places it is high, and in hospitals it’s a fair bet that antipsychotics are used far more than they should be.

‘Should be’?

Hmm. Challenging behaviour? Behaviours that we find challenging? Aggression? Shouting? Lashing out? Saying or doing things that would ‘normally’ be filtered out? Refusing to conform to rules? Doing something that might put me in danger? Or someone else?

I think the go-to antipsychotic is risperidone. It is the word that I hear during conversations in the subject, especially among hospital staff. And care home staff.

What is too often ignored though is that every behaviour has a cause.

And, equally, time and staff resources are often insufficient to attempt to meet the needs of those in care.

So what happens? Reach for the risperidone of course.

Behaviours reflect needs, and the environment around a person. Needs of course include desires, hopes and wishes, as well as more immediate physical needs, like pain.

And the effects of any environment depend upon how that environment is interpreted.

I am sure I don’t have to restate that people whose brains are diseased or injured may be unable to process the sensory data from their environment in the same way as the majority of people, or may mis-process it, and perceive threats instead of safety.

If I were in a care home where I could not do or get what I wanted I might well rebel or protest. If I am in pain I may ‘tell’ you about it. If you are causing the pain or distress I may hit you or push you away. If I cannot recognise my surroundings as safe and familiar I may try to escape, or shout for help, or cry in distress.

Do these behaviours mean I need risperidone? The chemical cosh? If you decide yes it’s probably because you will not put in the time and effort to understand me and the causes of my distress.

If I am unable to express my thoughts or feelings in words I will either try to find some other way (loud? rebellious?) or I may just shut down and refuse to engage. I might hide away under the bed. Anywhere I can feel safe. Then what are you going to do? Ignore me?

Risperidone is only licensed for aggression in dementia, and then only under strict supervision. (Define aggression?) And it can take some weeks to have effect. So if my unmet need is short term it will have little or no effect, other than perhaps knocking me out. In which case I will fall, develop facial rigour, be unable to feed myself or drink. And I will decompensate as I lie in bed. After a week or two I will have lost too much muscle to recover.

There are also tranquillisers which are not licensed for use in dementia, though they may still be used (?). Same ill effects! Falls, lack of awareness, deconditioning.

There is another way. We know it works. We know it can be done. We just don’t have the resources and commitment to do it.

I would go mad if I had no way of doing things that give me pleasure (like over the last three weeks), if I had no way of touching plants, of smelling scents and odours, of reminders of what I have loved. I would shut down. And I would soon die I think.

If I am moved into hospital because I need that level of care I just need to know where I am, have food I like when I want it, see smiling faces, hear gentle noise, not have bright lights, be helped to toilet, have things explained to me, touch hands or arms…then I would be a lot less likely to get annoyed, worried, fearful and aggressive.

Namaste is a type of care that might not be available in hospital for practical reasons, though of course hospices DO use it. End of life seems to justify namaste care. Touch, aromas, art, music, plants, herbs, relaxation…

Namaste is about providing the experiences and feelings that relax and provide comfort. It is often much the same as what some of us provide for ourselves, at home. I paint or draw, listen to music, walk through grass, grow flowers and herbs, read books, write, research…these are my go to things and they all feed my spiritual life.

The 21st century is too busy and rigidly costed for dementia. There’s not enough money in health and care. There’s not enough staff. There’s not enough time.

What’s the point? There’s no cure. Might as well let ‘em die. Let’s put resource where it can extend productive life?

What do we value? I really do not know. And it is intensely distressing.

Techbros…space race…making money…the FTSE 100…ignore everything else. The price of everything…the value of nothing.h

What price life? What price quality of life?

Please let’s not use antipsychotics just to make jobs easier.

Everything has stopped

This tunnel is dark, damp, seemingly endless

The watery sun stoops down

As it draws another grey day to a close

The finches even look dull

As they flit through shaven hedgerows

Specking and searching

For grains and the last darkening berries

The sky is a bag of grey mould

Lying over our lungs that struggle

Waiting

Waiting impatiently

For sunlight to warm

And grow new skin

Winter is come, smothering, killing

Stopping growth and sap

Until all around is wrinkled trunks

And fallen branches and decay

I, too, am decayed

I, too, creak in the cold wind

I, too, look out, searching for signs of new life

In the threatening wilderness of winter

I wait, paused in my hibernation

I wait for signs of life returning

But will spring come this time?

Will anything change?

Or are we stuck, seized, silent

Frozen into endless waiting?

My metaphor is real

I do wait and I do creak

And all around I do see…nothing

Nothing changing

Nothing moving

Frozen, blind, deaf all around me

This is not farewell of course

That is not yet my decision

I nourish my seeds of hope

I write, I speak, I search, I wait

Today there is even no breeze

To blow tunes across this freezing landscape

I wait for change

I know it is buried out there

Beneath snow and ice and chaos

I wait

If you have read my writings in previous years you will know that Christmas brings noise, clamour and many urges to restrain small people. So this year something different.

For 2026.

For in 2026 we should come together to make change happen in the world of dementia.

I was inspired by last night’s programme about Sir Chris Hoy’s life with terminal cancer. He repeated his mantra many times….live in the moment, do what makes you happy, don’t dwell on what cannot be changed but do what you can to make your life worthwhile.

He wants to raise awareness about prostate cancer. I think he quoted figures of 40,000 men dying each year in the UK because they had not been diagnosed early enough. That is pretty sobering! And he organised a fund raising cycling event for people with cancer which raised £3.5m. That is heady stuff.

I have been thinking this year about how I and we can influence politicians and health commissioners to make diagnostic and post diagnosis services for people living with dementia mandatory and consistent across the UK. To get away from the post code lottery of provision and from a threadbare patchwork of support for a few lucky people.

Most of us get very little despite government guidance, and the waiting times for diagnosis are lengthening almost everywhere. The only widely credible post diagnosis activity, Cognitive Stimulation Therapy, is being stopped by dementia diagnosis and support services…because of lack of funding.

Last week I wrote to my MP, the Lib Dem lead for health and social care, to see if she can and will work with me to get change. I know she is interested in the poor state of dementia care…

The thing is, lots of us are happy to put our heads above the parapet and call for change, and we do…give talks, write blogs, work with commissioners who will listen. I hear the same things year after year. At Congress, in virtual meetings, at face to face events…we all know – it’s not a secret – that change is needed in order to make a diagnosis of dementia NOT a death sentence and NOT a reason to give up on life.

There is plenty of research which proves that leading active, engaged lives, learning, making art and music and just doing what you enjoy slows down the progression of symptoms and indeed improves brain speed significantly compared with those people who do little.

As often stated, there would be uproar if people with diagnosed were ignored. But there is silence for the c.130,000 newly diagnosed dementia cases each year.

This is disgraceful. And I just cannot fathom why it continues to be ignored by those in positions to make change happen. We elect MPs but they cannot get themselves organised into an effective body that cannot be ignored.

We pay handsome salaries to executives in our ICBs to commission and monitor health and care services for us. But they ignore dementia.

We are in the too hard tray. The group of people who will die.

Oh, hang on, everyone will die. So why spend money saving people and extending their lives?

No one knows when they will die. With or without serious disease anything can happen every day and hour. Chris Hoy knows he will die from the cancer, but he knows that he will die sometime whatever the circumstances.

Why do we spend so much and work so hard to give people with cancer the chance to continue living, and to do it as pain free as possible?

What is the value of a life?

What is the point of living?

Why save lives?

I’ll tell you why….because we are human beings with brains that have grown big enough for us to have feelings and relationships, to be able to work out how to do new things, and to consider that life should be worthwhile and free of suffering.

We’re not very good at avoiding suffering, but we are fantastic at learning new tricks. We believe that human life is somehow sacred and to be cherished. Whether religious or humanist, most people know what is right and what is wrong, and that life is valuable for its own sake. We don’t have to be philosophers. We grow up and learn right from wrong.

Why is dementia different? Do people with power to make change all lack the basic human quality of empathy and the desire to prevent suffering?

No. And they are really good at some things. We fear cancer. We fear terrible deaths. We fear pain. So we work to develop cures and to support people with cancer.

And heart disease. And COPD. And diabetes, etc etc etc.

Just what will it take to change the minds of decision makers about dementia?

How can we change their minds?

The Alzheimers Society have turned to fear….the repeated dying trope. But this does us a disservice and creates fear and stigma. We should not need to do that to influence people.

The truth stares at us. The facts are known. Why are they ignored?

What do we have to do?

Should we jump in front of racehorses or trains?

Should we chain ourselves to Parliament buildings?

Should we hunger strike?

Or should we just talk and write as we do?

How the hell are we going to get change?

Let’s at least have a discussion about tactics and possibilities?

Then let’s get down to business!

The old Polish rallying cry Nic o nas bez nas! (nothing about us without us!) must now go up from the whole of Europe.

Thank you, Prof Tim Garton Ash in the Guardian, for this wonderful reminder of our own rallying cry.

Nothing about us without us!

Nic o nas bez nas!

During MSNAP reviews of memory (dementia diagnosis) services, I have noticed a sort of humming and ahhing when the question of co-produced care plans come up.

(MSNAP = Memory Services National Accreditation Programme.)

Our review standards require that treatment and support plans should be based on clinicians understanding what matter most to the patient and supporter. Plans should be genuinely co-produced with service users, so that they address what matters to them.

And yet care plans are almost always merely letters to a GP about the clinical matters, including prescribed meds and dosage, and that the patient will be handed back to the GP’s care, either immediately or after titration of the medication is stabilised.

Some clinicians dictate letters that clearly acknowledge the conversations they have had with patients, and in this way imply they had heard what the patient had said. But rarely is there any follow up to this, suggesting for example that Mr Bloggs enjoyed painting and fishing and that these should be encouraged and supported.

And we know that GPs and their staff rarely provide meaningful annual reviews for people living with dementia. They claim the QOF money for often doing next to nothing.

I find it disturbing that clinicians care so little about people living with dementia that they ignore their social and personal needs. And this is despite growing evidence that social engagement, physical exercise and using your brain positively delay the disease process. Or perhaps they create new alternative pathways in the brain to circumvent those that are now dead.

Either way, I and many people I know, and indeed two academic studies (FINGER’) have shown, that those of us engaged in research, activity, exercise, social engagement and doing what we enjoy have much slower symptom development.

That is why we are so often asked if we really do have dementia! Yes, and by doctors too. There is an assumption that our brain disease will follow a certain process which will kill us in about five to seven years.

NOTE TO SELF: I should be dead.

I am finding that more research studies are looking at the post diagnostic ‘pathway’, and how to help people to access the (few) post diagnostic support opportunities that exist in a community.

Social prescribing…warm handovers…dementia navigators…studies looking at how to ensure people with a diagnosis actually do access things they would enjoy. (Not just dementia friendly activities as well!)

At the moment what memory services generally say is that they signpost patients to other services or support. I always ask whether they find out if patients actually take up these offerings, and they always say no. Well given that so few groups and activities specifically directed at people living with dementia exist, it can only be a tiny proportion of those diagnosed who actually reach what is on offer.

We probably all know that a dementia diagnosis is hard to deal with, and many many people don’t actually understand what dementia is and how the diseases work. And how to delay symptoms.

Most of those diagnosed retire into a degree of isolation, and they lack the confidence to go out and meet new people and do new things.

And of course they/we don’t really want to go to a group of people we don’t know and who may well be far more advanced in their disease process.

We need hand-holding. We need gentle supporting to venture into this new world that we are fearful of. Social prescribing, if it happens of people with dementia, is signposting too. People need help, not just ‘pull your socks up’ and get out there.

‘Cognitive rehabilitation’ is one method to help people do things they are hesitant or fearful about. But this is rarely offered by memory services. It is research evidence based, from the GREAT project.

It looks as if clinical staff know they should be helping us to do stuff, but that they are not prepared to make the commitment to ensure it happens. And this is partly down to resource.

But I would argue that it is really down to services having staff who really want it to happen, and who put in the leg work and effort to change how their system works. In the few places where there is genuine post diagnosis support it is al ost certainly due to personal vision and inspiration to just make it happen.

In life you either accept things as they have always been, or you make the choice to change things. Yes, it may be tough, hard work, which takes extra time, but that is the only way the change will happen.

And to fall back on the old ‘we haven’t got the money to do it’ excuse is a cop out. There are always choices to be made when it comes to scarce resources, and changing things for the better may take courage.

But isn’t it time that dementia is viewed and treated as a health issue, a disease that can be managed and delayed by non-pharmacalogical means, at far less cost to the country, and giving people living with the disease much better lives?

How can we influence the health service commissioners to move money into improving our lives? How can we pressurise the government to create statutory frameworks around what must be provided?

The research evidence is mounting, but those who have the power to change the system are not listening. They continue to close their ears and eyes and put us in the ‘too hard to fix’ box.

Or possibly the ‘what’s the point?’ box, since they all expect us to wither and shrivel and die in a few terminal years.

I get tearful when I think and write about these issues. I hear the same old stuff trotted out at Congress, and see the same old attitudes in my local integrated care board.

How are we to break this rigid determination to ignore us, all one million and the rest in the UK?

Here we go again, around the dementia mulberry bush.

Cogito Ergo Sum.

I think therefore I am.

If I think slowly and have several bits that don’t work properly, I AM NOT.

Therefore also I do not have capacity.

Therefore also someone else can sign consent for me.

?

Had a little disagreement with an academic psychologist today. I cannot go into all the detail because it was related to some research in progress, but it was all about dementia = cognitive impairment = lacking capacity = consultees can sign consent for me.

This was on the issue our famous Prof has with us over living well with dementia, and being able to speak in public about it. If you can describe how you feel you cannot have dementia! If you can speak you cannot have dementia. If you live a good life, meet others, do research,, keep fairly fit, learn new things…yes…you cannot hve dementia.

It is the old question of when exactly dementia starts and mild cognitive impairment stops. But it also is an outdated view of dementia, which takes no account of the infinite variability we all have as individual human beings, and the infinite variability of which brain cells might be affected by the disease.

So the person today said that I was very unusual for being able to speak fluently eleven years after diagnosis. Unspoken message = you ain’t got dementia mate!

Again and again we face this.

If you can talk about your condition and your life you cannot have dementia. And if you have dementia you cannot talk about your life or give consent.

If people have cognitive impairment – ie dementia – they can not give their consent to be involved in research, or anything else I guess.

Well f**k me. There are, ergo, hundreds of thousands wrongly diagnosed and living under a shadow of dementia when actually they’re, well, as fit as the rest of humanity.

What a ridiculous statement!

I know many many people with a diagnosis who are still taking part in society, in research, having fun, keeping active as well as they can, having a bit of help with this and that, good days and bad days…fluent and cheerful when we get together.

There is increasing evidence that staying active and healthy, having a good diet, learning, giving, engaging with others…keeps the dementing brain much more effective than if you don’t do these things.

Only today…walk 3000 steps a day to ward off or slow down dementia.

How will we retain our personhood, our identity, if professional experts (sic) really believe we have lost them as soon as we get a diagnosis?

And what is the point of early diagnosis of the disease if that diagnosis in some people’s eyes renders us helpless?

That’s not a good message to the world. Don’t get diagnosed because we’ll take away your life. That very day.

Again, f**k me. Or perhaps f**k you. We have been fighting against this attitude or belief for years, decades, and certainly since Kitwood wrote his dementia revisited book(s), about personhood, identity, love, activity, engagement.

I probably should not get hooked by these absurd statements. I should ignore them.

And I didn’t actually have a row, though perhaps I should have. I was thankfully supported by a carer from TIDE, which was reassuring. I rather imagined that many others around the meeting agreed with me. But who knows?

Surely there cannot be many people left with these dinosaur opinions?

Chasing the money and the wrong tail

Football and heading balls (or other heads) are linked to development of dementia later in life, often in middle age.

Rugby is also linked, to both dementia and motor neurone disease, although the process for developing MND is not yet understood.

So hats off to Alzheimers Society for making this dementia link work for them, in the recent soccer international. They have for some time been supporting people across the country to attend matches, which is great, and now they have made a whole stadium and television audience get their message.

What message? That dementia is a devastating disease which takes away our identity. Hence the removal of names in the second half from shirts.

And, in interviews afterwards, both the BBC and one of the ‘mascots’ (terrible description) referred to memory. Just memory. Which demonstrates a familiar lack of understanding.

Um, what does this really say about Alzheimer’s Society’s strategy and business model?

The awful Long Goodbye film was about family and friends losing the person they knew, because they can no longer cook or remember names. The nameless football shirts were another way of saying we lose our identity as dementia develops. And since all players lost their names, it follows that all of us with dementia will lose our names too.

That is, we will all suffer the same symptoms and loss of identity. Which is of course crassly wrong.

Well I have news for you (and Alzheimers Society); we don’t lose our identity unless you take it away. We are still who we have always been, which has of course changed over our lifetime as we learn and work and live. Just as YOURS has changed.

If I can’t remember YOUR name, I am still the same me. I just cannot remember your name. Or how to cook a lunch for the family. It’s YOU that feels hurt, not me. I am still me in my world. I have not lost my identity.

If you remove my freedom to make choices and preferences in my life, then you do disable me and remove my self identity. That is what happens when you do things TO and FOR us, instead of WITH us.

Saying we lose our name totally destroys us in YOUR eyes not OURS.

You are disabling us years before dementia does. Who cares if I can no longer remember who you are? I have my memories, my whole life, and I will continue to think or play them through in my mind.

Alzheimer’s Society, the purpose of your campaigns is…to raise money to keep your charity going. By devastating us all with a seemingly unavoidable 1 in 2, you hope to persuade people to fund you and your work.

Similarly, Alzheimers Research UK (ARUK) uses the 1 in 2 will be devastated by dementia. And they have published a paper which purports to explain how they arrived at this hopeless figure.

What they really mean is that 1 in 2 people who live beyond about 85 will either have dementia or provide care for someone with dementia. That’s after about 97.5% of the population have died of something else.

And why have they manipulated data to get to this devastating number? To get yer money of course.

They say they want a world without dementia! And they imply that if we give enough money they will find a complete cure or prevention for Alzheimer’s disease.

If cancer is anything to go by, they won’t! They may develop treatments that modify the symptoms. They claim that donanemab and lecanemab are the start of some revolutionary treatment interventions which will get rid of Alzheimer’s disease.

And it is the big pharma companies that invest the huge amounts in expectation of huger profits. Not ARUK.

Worth noting that many big pharma companies have pulled out of dementia research because they could not see the prospect of success.

Cancer research is ten times better funded than dementia, and researchers are finding new interventions that can stop and remove the cancer in some, and give more years of living. But they ain’t close to getting rid of cancer.

Because cancer and dementia stem from the body’s cells changing in response to something.

Destroying all the amyloid in a brain leaves the increasingly fragile blood vessels at great risk of inflammation and rupture. That is dangerous and proven. And it does not cure the dementia. There is very little proven benefit from these drugs.They are the wrong tail to chase.

Blood tests that look for amyloid will just persuade more people to take these dangerous drugs sooner. More danger.

Of course we should research what causes dementia. It is not Amyloid or TAU. These substances are the result of other influences on our cells, so we have to identify and modify those influences.

And in the meantime, let’s stop shouting about the devastation of a dementia diagnosis…you are just making the devastation worse by using the word alongside your lying numbers.

Dementia will become more prevalent as we…

live longer

eat more junk

consume micro plastics

live in mouldy, damp housing

drop out of education early

drink too much alcohol

smoke (and vape?)

take too little exercise

Public Health needs to take the strain in changing our lifestyle habits.

Tax fast food out of existence, and subsidise good foods.

Tax smoking and vaping out of existence.

Prevent the use of plastics and develop alternatives (it’s already happening)

….

I think Alzheimer’s Society should turn their attention to providing support in communities (neighbourhoods) for people affected by dementia, to help them live as good lives as they can.

Stop all this negative, disabling, devastating, toxic advertising and campaigning.

Get back to where you started. Help people live better lives with dementia.

Here’s another go at dementia numbers, and the devastation that surrounds dementia.

One or two of us (with dementia) have become increasingly upset about the way numbers and predictions are being thrown around by various organisations, supposedly based on reliable research and data.

It is time to address the absurdities and fear that these numbers promote. They are almost certainly used to create a generalised fear in the population about developing the ‘devastating’ disease dementia, or of having to provide care for someone with it.

Why? Well, it’s about money! Durrr

Charities rely largely on donations to exist. And of course we all want the charities which work with people with dementia and their carers to continue with their good work.

Well, most of the charities! There are exceptions.

Since Alzheimer’s Society put out their awful Long Goodbye advertisement the scale of terror and devastation has exploded. It’s like…if you say that, we’ll have to say it too. And ramp up the message a bit to attract attention.

So Alzheimers Research UK are saying 1 in 3 will develop dementia in their lifetime, and 1 in 2 will be ‘devastated’ by dementia through either having the disease or providing care and support.

The numbers that flow from these claims are totally absurd. So let’s examine the numbers again…

In 2023 there were in England and Wales…

61 million total population (inc 3.2 million in Wales)

676,000 in England estimated with dementia (438,000 diagnosed), so 35,000 in Wales estimated with dementia.

Total 711,000 living with dementia in England and Wales in 2023.

This is 1.16% of the total population, and 5.8% of those over 65.

12.2 million were aged over 65

There were 581,000 total deaths in England and Wales in 2023

67,000 people died with or of dementia (ie on their death certificate) in England and Wales in 2023

So 1 in 9 deaths were ‘with or caused by dementia’.

67,000/12.2,000,000 = 5.5% of people living over 65 died with or of dementia = 1 in 20

….

In ‘Seeing the Unseen’ ARUK say 1 in 2 people will be ‘devastated’ by either having dementia or supporting a person living with dementia, or both. That would be 6 million people aged 65+ in England and Wales. This 1 in 2 affected by dementia comes from an ARUK report in 2023, and is a statistically calculated ‘Lifetime Risk’.

ARUK also says 1 in 3 people will develop dementia.

ARUK uses words like crisis, heartbroken, scared, helpless, in their foreword to Seeing the Unseen.

Alzheimers Society is very keen on describing dementia as ‘devastating’.

Both of these claims make people imagine there will be millions upon millions of people with dementia in some unspecified future year. And millions more providing unpaid care and support for loved ones. This is indeed frightening. It WILL be YOU!

But it is not true. And nor will it happen.

….

What is the ‘Lifetime Risk’ calculation used by ARUK?

This is a statistical calculation that excludes other causes of death, thus exaggerating the number with dementia. It assumes no other changes relating to dementia or other patterns of illness, such as lifestyle or disease modifying interventions.

It is wrong and misleading precisely because most people will die of something else before dementia starts, or they will die of a different disease alongside dementia.

At a population level, if nothing else kills you 33% will develop dementia. Which means at around 85+ years old.

If nothing else gets you, around 1 in 3 will get dementia before they die. But of course other diseases and accidents do get most people first. And by the time the 1 in 3 becomes true there will be very few people left in your age group.

And actually UN data 2001 shows that out of 100,000 people, 128 may die with or of dementia, but 460 will die of something else. So the risk of dying of something else is 3 times higher (460:128).

If the lifetime risk is around 33%, yet only 5% of over 65s have dementia, most must be dying of other causes.

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It appears that the lifetime risk of 1 in 3 grossly exaggerates the actual numbers by excluding all other causes of death. Otherwise we would have 4 million plwds even now, in England and Wales, ie a third of the over 65 population.

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So the statement that 1 in 2 will be affected (or devastated) by dementia is misleading, indeed wrong. And that 1 in 3 will die of dementia is also wrong, as only 1 in 20 in E&W died with or of dementia.

All these numbers mean different things and can be manipulated to show whatever you want!

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Dementia, the symptoms caused by brain disease, is very much like premature ageing. In fact some scientists believe that Alzheimer’s disease is directly caused by speeded up ageing of cells, by oxidation, stress, and other lifestyle factors.

It is just another disease, that none of us want but which may happen. And if you choose to you can live well with dementia, or at least as well as you choose.

For much of the dementia disease process we are not incapacitated. We continue to live our lives as we wish, and we should continue to do all the things we enjoy, and learn new skills or knowledge.

The shame is that unlike almost every other disease, there is almost no meaningful support for us. And there is huge fear and misunderstanding across our communities.

It is shameful that dementia is portrayed so violently as devastating, because for most of your time with dementia you can live as good a life as you ever did. If you choose to. And if you can find some support when you need it.

Charities and statutory bodies must stop creating fear by exaggerating the likelihood of developing dementia, and must stop presenting every stage of dementia as devastating.

People need positive images and messages about living with dementia. Many of us live positive lives for many years after diagnosis, enjoying doing things that give us pleasure and intellectual and social engagement.

For pity’s sake, stop your melodramatic, fear inducing begging and get on with supporting us.

Today we are doing numbers.

And devastation.

Numbers ought to be certain, fixed, revealing data. But data is not always true or reliable. And it may be presented in ways that confuse or deliberately dissemble.

How many people in the UK have dementia? Assumptions based on real world data show that around one million live with the disease, while around 64% of these have received a formal diagnosis.

What’s the UK population? Around 69 million.

What percentage is that, living with dementia? 1/69, or 1.45%.

And around 1% of the population have formal diagnosis of dementia.

We also have people in our population who are unpaid, informal carers of people with dementia. This is estimated at around 700,000.

How many people are therefore directly affected by dementia? We might estimate 1.7 million.

So the highest sensible estimate of people living with and/or affected by dementia is 1.7 million in the UK.

Of course there will be others who have some less direct relationship with dementia, an uncle or a friend, someone at work nearing retirement?

But let’s stick with 1.7 million, or 2.5% of the UK population.

Now, Alzheimers Research UK claims that…

One in Three people born this year will develop a dementia.

And One in Two will have their lives ‘DEVASTATED’ by dementia.

And even Dementia UK have jumped on this ‘one in two’ bandwagon, in their new strategy.

‘…with one in two of us facing dementia in our lifetime…’

Alzheimer’s Society puts it like this…

So, how do these numbers stack up?

If one in three of us alive today develop dementia before we die, at some stage, around 70 years hence, there will be near enough 24 million people with dementia?

Well, it sounds like that is what they are saying, doesn’t it!

And another 17 million will be providing unpaid care for these people with dementia.

That’s 41 million out of a bit over 70 million people directly affected (‘devastated?’) by dementia.

Which is, I think you might agree, CODSWALLOP.

Take out children under 18: UN figures state 14.4 million in 2023.

Leaving a grand total of around 15 million between 18 and death as the available, paid workforce.

This year, in the year to June 2025 there were 34.2 million in employment.

So there won’t be much going on in the economy for people to earn money or pay tax, will there?

This is all blatantly STUPID NONSENSE.

Someone has used data to create eye-catching, heart-stopping headlines. Why?

To get centre stage awareness and fund raising.

Some of our dementia charities are convinced that if they frighten Joe and Vanessa Public they will give more money to address the problem.

Perhaps they are right. It probably does work.

My big gripe with this attitude, and many others share my view, is that it paints a picture of a huge and totally devastated proportion of our society, living awful, devastating lives.

Which is NOT TRUE.

Some of us do, of course, and perhaps quite a few of us will hit that bad, late patch before we die from something else. But for most of our lives we live as well as we can, with dementia, and generally that is OK. We might not choose to have dementia, but those of us who keep active and creative make our symptom development slow down such that we may live for 20-30 years with the disease. Rather than the oft quoted 7 years.

Numbers!

And don’t get me started on the pathetic government and NHS response to dementia!

My brain is melting.

My temperature is rising.

And it’s gonna to be an angry day.

My mini war against online GP booking systems continues. They’ve changed the form!

But I didn’t know, of course, until I needed it. As you would expect.

So I go onto the GP website and…there is NO FORM.

I go back and forth a few times before finding a new word…ANIMA.

Hmm. What’s that?

I click on the appointments tab, to find a page of three columns of small font text explaining a new system called

Anima

It’s part of their new Total Triage system, ie where everyone has to complete the form, either themselves or over the phone with a staff member, if you can hold for long enough.

And then some more text.

Then

Anima

again, so I click on it and low and behold I enter my name and it tells me I have to be checked by entering a code which will be sent to my phone.

So I get a text message, enter the number…you know the drill.

And we’re off. Same old questions, in slightly different format, but in tiny font size.

So do I have this, that or the other? If not, just click next page. Again and again.

And the same infuriating, bloody annoying, repetitive demands for further explanations.

If you don’t quite fit the expected format you are a bit sunk and have to find a way round it.

Anyway, I finish it, swearing not a little, and it says your enquiry will be responded to within a few days.

Aha. ‘End of next working day’ has become ‘a few days’.

It’s like the shrinking Toblerone and biscuit packets. They may be the same size but they contain less. And the prices go up and up.

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I despair at the utter ignorance of how difficult these methods of getting an appointment are for anyone with a cognitive disability, or who is just ill at ease with IT and digital things. I am pretty good at finding out how things work, and working out where certain information might be in a website, and it still makes me stutter and search around.

A lot of people over 65 are a lot less familiar and relaxed about digital stuff.

Two years ago I researched how easy people living with dementia found it to contact their GP. Over half said they could neither manage the phone system or the IT method, and therefore relied on others to do it for them.

40% of people living with dementia live on their own. They may have a friend or a family member somewhere who can help them, but what does this do for a person’s identity and sense of self worth? And of course many will not have such a friend.

And then there’s confidence and personal data…do you really want someone else entering personal and private stuff about you?

It ain’t getting easier, is it, this living with dementia? Navigating the barriers thrown up in our faces. Trying to find support or even basic care.

Today I am left wondering if it is better to live in ignorance of what might be, in a little bubble of my own, and just leaving behind the world of advocacy and campaigning, trying to make life better for us all.

I really don’t like what I see out there.

I am, indeed, steaming today.