Sewage systems, food health and longevity, health care, diet, less pollution…
We have made huge advances advances post 1945. We can keep people alive longer, long enough to have good retirement years. Long enough to develop more diseases, but live with them.
There has been massive investment in developing treatments, and massive profits for pharma companies and investors.
Who paid for it all? Well we did, of course, we taxpayers. And rightly so.
But, and of course there is always a but, has the enormously expensive search for longevity been worth it?
As I near my 74th year I wonder. When is the price of living no longer balanced by the benefit? I mean, there will come a time for all of us who do not die of a sudden catastrophe when we might think we’d be better off dead.
We have got so good at prolonging life we may have forgotten that it may not be for the best.
Take dementia. The extended life expectancy post war has led to huge rises in dementia diagnoses. Not surprising if dementia is related directly to age, though it isn’t.
If, however, some dementias, in particular Alzheimer’s Disease, may be partly just natural ageing of the brain speeded up by life style and environmental factors, we may have brought this huge rise in dementia upon ourselves.
I don’t think it is good enough to just say that we live longer therefore we have longer to develop dementia. There are causes, but we don’t know what they are.
We know that excess amyloid and tau tangles can be found in most (though not all) dementia brains, and in cerebrospinal fluid. We don’t know why that amyloid and tau get there in some people and not in others. We don’t know why dementia can occur in brains that subsequently show no excess amyloid and tau.
We know that it is the aim of pharma to find a ‘cure’ for dementia. It has long been the magic, the holy grail of research to find the cure. After all, we’ve done it for polio, smallpox, malaria, scarlet fever, and many other diseases.
But…but those cures or treatments were only found when scientists worked out what the cause was.
With dementia it’s different, and governments and researchers and pharma companies are so desperate for success that they have convinced themselves that a cure can be found. So they grasp at any straws that blow along.
What we really need is to establish the causes of dementia. Take Alzheimer’s. It occurs far more in poor communities, in polluted environments, in obesity and diabetes, and in chronically stressed individuals.
As has been pointed out by many health journalists, public health work has all but stopped in the last fifteen years. We pour money into research for all sorts of diseases, and into treatments, but we don’t spend money to keep the population healthy. We spend to pick up the pieces, not to prevent people breaking.
We sell off public assets like water so that rich investors can become richer. Result? Appalling decline in water quality.
We allow the food industry to create and sell us food that is very unhealthy, but cheap and addictively filled with salt and sugar. We allow them to advertise this food, even though we know it is killing us.
We have motorways slicing through housing, hidden only by fences which certainly do not contain the fumes.
People complain when a scheme to reduce air pollution is introduced and costs us a bit and interrupts our lives.
We see the government reduce benefits for the poor and disabled, and use mean tests which are designed to keep people off benefits. Poor.
If you are one of the several million living in or near poverty how on earth can you afford good health?
We will see a tsunami wave of dementia in the next twenty years as post Thatcher babies reach old age. We will see a big rise in strokes too, I read the other day, as a result of untreated high blood pressure and diabetes.
Our health and care services will be overwhelmed (aren’t they already?)
We cannot afford to NOT invest in public health and the causes of poverty.
Back to the first question then.
Do I want to be kept going when I’m falling apart?
How will I know when enough is enough?
Today there’s a debate in parliament on assisted dying. I hope our MPs ask themselves why we are so convinced we should keep people alive past their good life sell by date.
(I have started reading ‘American Dementia’ (by Daniel George and Peter Whitehouse), a brilliant book about health and dementia and the profit driven quest for a miracle cure, which has to an extent informed this blog.)
Alzheimer’s Society claim on their website that ‘1 in 3 people born today will be diagnosed with dementia in their lifetime’.
And ‘1.6 million people in the UK are expected to be living with dementia in 2040’.
What will the UK population be in 2040? Around 70 million apparently. So that is 2% living with dementia.
Currently there are reckoned to be 900,000 people living with dementia in the UK, of whom about 60% have been diagnosed, (ie 540,000). So that gives an incidence rate currently in the UK population of 66 million, or 1.3%, with or without diagnosis.
Not a third. Not 33.3%.
Most people are diagnosed with dementia after age 65. Data shows that in 2018 3.3% of people with dementia were under 65. That means around 80,000 people developed the symptoms of dementia before 65.
The number of births in the UK in 2022 was a little over 600,000 in 2022.
Now, those 600,000 babies born this year will be 65 in 2089. And 75 in 2099. They may have life expectancy of around 75, though who knows what health and the environment will be like then? The human race might be living on the moon.
The implication of the Alzheimers Society statement about 1 in 3 being diagnosed sometime makes the reader think, oh my God! A third of the population will be living with dementia!
Nope. NO, No, No.
At any one moment, most of the population will be well below the age when dementia symptoms might emerge. Yes the incidence rate will be higher if we have a larger older population, as brains deteriorate as they age. But it means that perhaps one in three people aged say 80 might have dementia. And at least half the population will be dead by age 80.
Another statistical curiosity is about the number of people diagnosed with dementia who have Alzheimer’s disease.
The generally quoted number is in the 60% of diagnoses area.
But I found out recently (and fairly reliably) that currently only 30% of people being diagnosed with dementia are told they have Alzheimer’s disease.
Odd. Is something amiss with the figures? Have guidelines about diagnosis changed? Or is it a data blip? If you know any reasons please do let me know.
One conclusion I can come to is that other types of dementia result in much quicker death, ie shorter time to death, so we end up with a higher proportion of people in the population living with Alzheimers than with vascular dementia, Lewy Body, FTD, PCA, etc.
This tells me that Alzheimers disease is more likely to be caused by environmental and lifestyle factors than by organic disease. It also tells me that you can slow down Alzheimers disease development or symptoms by keeping healthy, active and socially engaged. (That might be a bit of a long stretch objectively!)
In 2018 12% of death certificates included dementia as one of the causes of death. But even that statistic may not be reliable. Most people die over 70 with multiple morbidities, ie several diseases. Dementia might be one of them, but not necessarily the direct cause of death. It may be included on the death certificate because a doctor is aware that the person had dementia, especially if there is no one single obvious event, like a heart attack.
I’d prefer to say that 12% of deaths have dementia included as part of the concoction that causes their death.
Let’s not adopt a scare tactic. If you are born today (and clever you can read this already) your chances of developing dementia are not one in three. You will far more likely die of something else before you get dementia symptoms.
The point, I think, about awareness of dementia risks is to alert people to live in ways that reduce those risks.
We should not live scared that life will be shit and short because we are almost bound to develop dementia, and that we will be that image of late stage dementia you so often see in media, and that rightly you fear becoming.
We are more likely NOT to develop dementia during our lives.
But that message does not play out well in awareness (and fund) raising.
What you may not know is that data shows that dementia is more prevalent in areas of high deprivation than in well off areas.
Risks of developing dementia are reckoned to be affected by diet, education, smoking, alcohol, pollution, obesity, diabetes, lack of exercise, and long term stress. These are all more prevalent in areas of high deprivation than in better off areas.
A new report by The Kings Fund finds significantly higher levels of lill health in the most deprived areas of the UK. They looked at data about recorded and self reported illness in 20 categories, including dementia, COPD, diabetes, heart disease, chronic pain, stress.
Their conclusion (though do please read the executive summary of the report) is basically that if we, the country, do not address and reduce the inequalities in society, we will have appallingly increased levels of ill health by 2040 which we as a country will not be able to manage.
And the corollary of that is that our economy will suffer too, because there will be increasing numbers of working age people unable to work, and increasing demand for health care.
(Ring a bell? It’s happening now!)
So…instead of looking to spend many billions on somewhat dubious drugs which have limited positive effect AFTER dementia has developed, government and individuals should be addressing the causes of this ill health mushroom cloud. Poverty. Inequality.
And, to misquote, what’s good for the brain is good for the heart!
We are completely missing the point, and it’s staring us in the face if we look, that our growing ill health is largely due to the state of our society. And taking a laissez fair approach, rewarding the well off, ignoring those most in need, will get us nowhere other than in decline.
Dementia is of course awful. But so are a heart attack, a stroke, diabetes, chronic pain.
We fear dementia because we have no cure.
So turn the telescope around…look at and do something about the causes of ill health and inequality, and prevent a lot of this burden of disease.
We do not need to spend fortunes on cures and care when we know that poor, inequitable public health is the cause.
It may be inconvenient. It may be politically unrewarding. But if you start being public and honest about our disintegrating society and health, people might just get the message that addressing inequality and pollution and smoking and diet is what matters.
We need to take responsibility if we can. But we also need to understand that those most in need need help to help themselves.
Alzheimer’s Society, please stop frightening everyone about dementia. Start campaigning for action to address the causes of dementia.
The film was co-produced by people affected by and living with dementia…
The film cannot have been co-produced with people living with dementia…
As so often…who do you believe, or agree with?
Let’s be a little more analytical today, as the dust settles.
How much was spent on the film? Estimates seem to vary between £50k and £1 million.
Whose money was spent making the film? Those who donated to Alzheimer’s Society.
Why was the film made? To (apparently) raise awareness of how awful and terminal the disease is. And thereby to put Alzheimer’s disease squarely in the focus of government.
What does Alz Soc hope to achieve by making this film? Not fundraising, they say. But we have no clear stated aim other than telling everyone Alzheimers disease is a terrible, living death.
Alzheimer’s Society say we are on the cusp of breakthroughs in the science of the disease. We have been told this for decades. New treatments are vastly expensive, dangerous to a third of patients, provide little gain for plwds for a lot of healthcare effort, and do not even address the unknown cause of the syndrome known as Alzheimer’s Disease.
Perhaps the film is designed to increase spending on research…it does not say that.
Alz Soc tells us the film is not about fund raising. Just as well, since they are losing support over a cliff.
If you believe, as I do, that Alzheimer’s disease (not the more specific Lewy Body, PCA, Parkinsons, etc) is the result of environmental factors throughout one’s life, what we actually need to focus attention on, and spending on, is public health. Healthy living. Address poverty. Address pollution, bad food, ptsd from childhood and other trauma.
Science does not know the cause of the tangles and plaques found in Alzheimer’s brains. And these are found in healthy brains too! Pharma companies have made huge investments and want some money back.
If you believe, as I do, that the way to live with dementia of any sort is to do what you enjoy, have fun when you can, keep socially engaged, be creative, keep learning, be as healthy as you can…while you can…LIVE…this film is offensive and deeply disturbing.
This film tells you that life with a diagnosis is not worth living and you are a terrible burden on family and society. You are living death.
This film tells us our lives are not worth living. We do not exist as sentient beings who can make choices, and who have identity. It tells us we are the living dead.
So, after all the effort, hard work and determination that thousands of people living with dementia and health professionals and many scientists have put into getting rid of the myths and stereotypes around dementia for decades, we – I – feel totally destroyed.
I have spent a week feeling angry, talking and writing about this film, and what on earth Alz Soc were thinking in making it, and I feel despair. I, we, feel we have wasted our recent years. I feel I am right back in the room being given a death sentence diagnosis. I have spent ten years thinking I was doing something worthwhile, opening people’s eyes to the reality of living with dementia as well as I can.
I have spent a week ruminating, reflecting, thinking it was all just a little storm in a little teacup. But it isn’t.
I woke up this morning feeling utterly useless, pointless, and angry. I thought seriously about why I should go on living if it was so pointless. If it has been such a waste of time and effort.
Alzheimers Society has taken away from me my sense of purpose.
What right have they to tell me and 900,000 others that our lives are a living hell? And that we cause so much suffering to our families? To change everything they have stood for for decades. To use funds given them to help support us, not destroy us.
I am deeply disturbed that a large charity has behaved like this.
Alzheimers Society…Don’t you dare say you support us. You don’t. You have just destroyed us.
Hang your heads in shame.
You have ruined hundreds of thousands of lives by publishing this film, lives of people who were trying hard to just live as well as they could. Without much support from anyone, let alone you.
You should apologise. Withdraw the film. Get back to doing what you are supposed to do.
‘At Alzheimer’s Society we’re working towards a world where dementia no longer devastates lives. We do this by giving help to those living with dementia today, and providing hope for the future.’
What hope for our future? None if we are the living dead.
I can no longer contain my anger. You stupid, idiotic, self important, deluded fools.
You have betrayed us. We who actually have the damned disease, who live with it every day, and know damn well how it will end. You horrible, self-centred idiots. How could you do this to us?
My dear friends, I wish to humbly propose a solution to many of our society’s woes, and one that will eliminate the suffering of so many.
We live in a country which is broken and broke. Our beloved health service is broken, starved of investment and proper planning.
Our local councils are starved of funding and are going bankrupt, causing massive reductions in spending on our citizens.
Our government is blind to our broken country. They promise, and promise again, that they are doing everything to fix our country, while casting rocks at poverty stricken citizens and broken travellers.
This cannot go on. And I have a solution.
It is not the first time in history that such a remedy has been tried, but generally in previous attempts to use this solution there have been insufficient resolve and determination to see the project through to conclusion.
Why do we allow suffering to go on? Why do we allow grief stricken families to live in utter despair?
We must change this. And, my friends, the answer is extermination.
11% of our citizens die from dementia each year. They don’t die slowly, they die repeatedly, day after day, for years. Some demented citizens have the audacity to live on for twenty years or more, far beyond their designated die-by date.
Their daily dying costs our state unimaginable, eye-watering sums. They are breaking our health service.
Their daily dying wrecks our good citizens’ lives, as they grieve over their feelings of loss.
We have a moral obligation, indeed a philosophical duty to protect our healthy citizens.
‘The greatest good for the greatest number’, wrote a Bentham and Mill in the 19th century.
We have forgotten that we owe our fit and healthy, productive citizens protection from the horrors of daily death.
We owe it to ourselves to make most efficient use of the limited resources our country has.
We owe it those who suffer daily deaths from this terrible disease to eliminate their suffering.
I therefore humbly propose that, immediately upon diagnosis, those citizens deemed to have caught this mortal dementia disease, who are therefore of no more productive use to society, but only a burden, should be humanely and peacefully laid to rest.
We will stop their suffering. We will maintain their families’ productive value and happiness. And we will save huge amounts of our citizens’ taxes that are consumed by their healthcare.
Furthermore, I propose that our society make best use of the organic material thus liberated. Bonemeal and other forms of organic fertilizer will be created from the bodies of these unfortunate dementia sufferers. We will reduce food consumption. We will reduce energy consumption. And we will make food creation more organically efficient.
The benefits are manifold.
No more unnecessary suffering.
No more pointless, daily deaths.
A more productive, efficient economy.
We may have whirlwinds of debate over the best (cheapest?) ways to lay people to rest, and those discussions will be co-produced with those who will benefit from this solution.
But, to conclude, I believe this solution can be quickly and painlessly be put into effect, given the current feeling across our country about the horror of dementia and death.
I propose that this solution be handed to an organisation that is fully behind ending this unacceptable suffering, The Alzheimer’s Society of Great Britain.
Kate Lee, Alzheimer’s Society CEO, said: “Our new advert ‘The Long Goodbye’ tells the unvarnished truth about the devastation caused by dementia. It’s not an easy watch but it’s an important one.”
First, this is the Alzheimer’s Society statement. It is not unbiassed, neutral reporting.
‘Devastation’ is an emotive word chosen to persuade regardless of facts.
Second…‘Unvarnished truth’? Whose truth? Easy cliché but meaningless.
There is no one version of dementia…every person’s is unique.
It’s been a whirlwind few days following the launch of our new film ‘The Long Goodbye’.
‘Whirlwind’ = lighthearted fun…hardly reflects the seriousness of the reaction. Let’s be serious about this.
My biggest personal learning since joining Alzheimer’s Society has been that everyone’s experience of dementia is different and my goodness, that’s played out over the last few days seeing the responses to the film.
So you agree that each experience is unique. But your film portrays all dementia as a living death. You contradict yourself.
The film tells the unvarnished truth about the devastation caused by dementia.
This is just repetition. And unvarnished? Who decided YOUR truth is any cleaner or truer than mine?
It’s not an easy watch but it’s an important one, and by reading hundreds of responses across social media since we launched it, it’s a reality that resonates with a lot of people.
Yes, there have been a lot of responses, from those living with dementia. Shock. Horror. Revulsion. Do show us some positives.
I wanted to address some of the questions we’re being asked, and I’m personally being approached with, too.
Was the film informed by people with lived experience? It was very much co-produced – from concept to creation – with hundreds of people directly affected by dementia.
‘Co-produced with people affected by dementia’…presumably you mean family carers, who of course have a negative view, understandably.
And was this really co-production? Or a questionnaire or zoom meeting.
The script was written by someone drawing on her own experience, having lost her dad to the disease two years ago.
The script was written by ONE person who was a family carer. So it is not co-produced, nor expressing the view of those living with dementia. I do not question her experience, but it is HER experience only.
These discussions haven’t all been easy and of course we haven’t all agreed but they have been great, challenging debates.
‘Great challenging debates’…makes it all sound like a game. What were the debates about? Perhaps how to raise the most money and how to deal with the inevitable hostile response from those you are supposed to support.
If ‘we haven’t all agreed’, who decided what the film should include? If people didn’t like the film, why did you ignore them? Co-produce should mean that those involved come to agreement rather than some being ignored. An editorial decision was made, and that comes down to you and your staff.
We continually adjusted the script based on that feedback. And it is important to add that the staff team within in the Society who are responsible for creating it, including me, have all had our own experiences of slowly losing parents to dementia too.
I guarantee that you did not get feedback from people living with dementia, your dementia voices. Or if you did do so they were selected very carefully.
I’ve also been asked why we’ve made the film so hard-hitting.
First of all, I want to make it really clear this is not about fundraising for us. It’s about raising awareness of the devastating reality of dementia for so many families.
The world is well aware already of the devastating impact dementia or any other serious disease may have on people. But we – and I include Alzheimers Society – have been committed for years to supporting people to live as well as they can, and to not see dementia as a ‘living death’. See your own document about language and stereotypes.
Shockingly, only 10% of people know that dementia is the leading cause of death in the UK and only 20% of people think dementia will affect them or someone they know (when in reality it will affect 50% of the population).
In 2022 11.3% of all deaths had dementia of some sort listed as a cause of death. 944,000 people were estimated to be living with dementia, diagnosed or not.
People die of all sorts of diseases, including just sheer old age. Dementia does not kill 50% of the population, which is what a casual reading would suggest. 50% of the population will know of someone who has dementia. That is not the same as being ‘affected’ by dementia.
Of course we all want a lot more research into the underlying diseases, but we shouldn’t use shock horror to get it.
Every day, I hear from people telling me that they need us to hear their story.
Of course you are right. Families are devastated when their loved ones die, and as they decline, and it can look to others that the lives of people living with dementia are awful. For some it may be, and their decline can be very quick. Many, though, live good lives, as well as they can. I do not want to sugar coat what is a disabling disease, but people who are alive need to be helped to live as well as they can, and to enjoy the things they value.
We all die of something, and it’s never going to be pleasant.
We don’t like talking about end-of-life, death and dying – but we have to get better at talking about it. Every time we shy away from talking about it, we give policy makers and decision makers cover to ignore dementia and take action on something else. It’s just not good enough, dementia isn’t the priority it should be, and we can’t put up with it anymore.
Yes we need to talk about dying, and we will all die.. But we do NOT die while we are alive. That is a lie. And it is frightening. If it seems like we have died each time family and friends see us they should meet us more often, so they see the gradual, rather than any sudden, changes.
I think policy makers choose to take action – and spend money – where they are most likely to see results. Dementia is not one of these. It is true that we have to get dementia onto the agenda.
We’re hidden away from dementia being UK’s biggest killer.
‘The UKs biggest killer’? Another highly emotive phrase.
People just don’t understand the scale of it. Of course I understand that people want to hear about living well. And it’s really hard for me to hear from those who think we haven’t taken the right approach here. But if we’re really going to change what a dementia diagnosis means for so many people, I need us to step outside of what we’ve always done.
So is this the Kate Lee way? Is it the family carers’ way? It’s certainly not the people living with dementia way?
Is this the new dynamic? Shock horror. Frighten everyone. All you’ll do is lower the diagnosis rate, and reduce the number of people who get any sort of support. Is that what you want?
Or do you want to frighten people into giving Alzheimer’s Society money? If so, tell us how you spend it to support us. How much goes on admin and staff and HQ? How much of Alzheimers Society money (as opposed to commissioners ’ funding) goes into your information workers on the ground?
We’re at a crossroads for dementia. It’s an overused phrase but we really are – we’re on the cusp of potentially game-changing research for some people and we’ve got the opportunity to make things better for our kids and grandkids. Better than what many of our loved ones are going through right now.
Two points here. We still do not know the actual cause of Alzheimer’s disease. It is a syndrome of symptoms, and scientific research has not yet established what causes these symptoms. We diagnose by ticking boxes of symptoms, and ruling out everything else.
So should we with dementia prepare for the same radical change in how you and others see us? Are you saying we should recreate the myths, stereotypes and stigma surrounding dementia, so we can put pressure on government to do better?
And we should not suggest that the current new treatments (not yet approved) are the magic answer. The side effects for 30% are seriously damaging to the brain. The benefits are dubious. The costs are excessive.
The cusp of game-changing research? No. That is wishful thinking, as no one can know where the cusp lies until they see it, and you should not use the metaphor of it all being a game. We have seen umpteen breakthroughs in recent years, all of which have come to nothing.
The reality is, if we carry on doing what we’re doing, nothing will change. And I need us to make this better.
Agreed. We do need change in the way people are supported, both those living with dementia and those providing unpaid care. But shock advertisements have a hugely negative effect on the way the population views dementia, as an awful, living death, for everyone affected.
You should be filming carers describing how hard it is for them, not telling us that their loved ones keep dying in their dementia, in awful terrifying lives. You have just promoted the lie that all living dementia is awful, terrifying, and a living death.
It is likely that family carers have the worse time because, unlike for cancer, there is little meaningful support for them. Shock the government with the shame of failing to fund adequate support for carers. And by all means shout out that more research funding is needed. (Compare cancer research?)
But don’t tell the world that having dementia is a living death.
I think you seem to be saying that you and the Alzheimer’s Society are going to radically change how you portray dementia, in order to get traction with government and research funders.
Personally I don’t want any part of that. Yes we need to understand the science behind dementia better, and gather more evidence of causes. Yes we need to provide meaningful support for those living with dementia AND for family carers.
But let’s not live in a world where we count for nothing but death and grief.
Well, I hope you’re pleased with your latest fund raising film. No doubt lots of horrified people will be giving you their money, as they wonder if they will be diagnosed one day with a dementia.
They will give you money because they are frightened. Because you have put the fear of horrific, repeated death into their lives.
You have played on people’s worst, deepest fears about older age and dying.
Next time I tell someone I have dementia they may well step back with fear and shock. They may assume that parts of me are dying, and that my life is terrible. They may feel unable to look me in the eye and talk to me. They will see me as a disease, not a person. A walking death.
I am sure you knew what you were doing when you produced this film. I am sure you calculated that, against the caution of any people living with dementia whom you might have consulted, the funds it would generate would outweigh the damage you would be doing.
In reality, I doubt that you did consult people living with dementia. I doubt whether anyone of ‘us’ would have worked with you on such an insulting, immoral project.
Nothing about us without us? Well, you have clearly ignored that. And us.
Thousands of us have been working, campaigning, writing, speaking for years (since Kitwood?) to change the way dementia is seen, and to show that the diseases that cause what is called dementia do not destroy us on diagnosis.
We live on. Many of us live pretty well, doing things we enjoy, learning new skills, having fun.
We may be ageing faster than others, and our brains are losing some of their capacity. But we are still the same person we always were.
No person stays the same throughout their life. Brains are plastic. They develop, adapt, make new pathways and connections to get round the little bits of damage, or indeed the unused bits that are no longer necessary.
Our families grow older alongside us. They see us changing as we age, and they adapt. They know we will lose the ability or strength to do what we used to do. Dementia may just hasten that a little.
Your film has invited people to see dementia in a wholly negative way, rather than accepting that we all age and change.
If we get cancer we change, mentally and physically. We may well get ‘cured’ sufficiently to live another five or ten years. The cancer may be completely removed. But make no mistake, the person is changed. Are we to view this as them dying, just because they have changed?
Of course not. So whatever life throws at us, we humans adapt. We don’t expect to be the same at 60 that we were at 20. Nor at 80 the same as at 60. Whatever the cause, we change, we grow old, our organs age.
Your film, and therefore your organisation’s message, is that it is dreadful and akin to dying to age, whenever you do it.
Of course no one wants dementia, or cancer, or copd, or heart disease, or diabetes. But stuff happens, often because of our life styles and choices.
We need people around us to see that we continue to live as who we are, even though we change. We do not die while living.
If others see us once a year of course they will see a change. And for them that might be hard. But that’s their fault not ours.
Well, the answer to that is to see us more often, not leave family visits to once a year, if you want to actually know how a person is. Our changes are almost always slow. If you visit us once a week you will not see ‘sudden’ changes. You will see the same person, and the changes will be very subtle and slight.
It is highly unlikely that on Monday I will know my son’s name and on Tuesday I will have lost it forever. Or that on Wednesday I can make a cup of tea, but on Thursday I can never again do that.
I do not die every time something changes a tiny bit. Any more than I died when I found I could no longer walk up Welsh mountains. Or sail dinghies. Or swim a mile.
Your film invites people to see dementia as long, slow death, in fact repeated deaths.
Your film invites people to be horrified by dementia.
Your film implies that you can do something about this ‘lie’ if people give you money.
Just what exactly do you do with that money? Many of us living with dementia find that we get very little or no support after our diagnosis. What exactly does Alzheimer’s Society provide?
Lots of information in your website. Useful.
A dementia forum website for people to share experiences and knowledge.
Information on what is available locally…in my case almost nothing, so meaningless.
And local information and support workers, where they are commissioned and paid for by the local health and care system. Yes these people are often very helpful, but they are so few and far between that very few people affected by dementia actually see them.
So what do you use your money on? To tell everyone how awful and horrifying dementia is. Oh thanks for that.
How will your funding change what you see as our slow and repeated dying? You owe it to us all to say how you use our money.
I suppose what I really mean is, what good do you actually do by putting out such horrifyingly awful films about what living with dementia is like?
Um, how can I start this? How can I persuade you to read on?
Try this.
I AM NOT DEAD.
You see, I am writing this, so I cannot be dead.
I AM NOT DEAD.
I have had a diagnosis of alzheimer’s and vascular dementia for nearly ten years. I am less capable of doing certain things than I was 20 years ago. I am physically weaker than I was 30 years ago. But
I AM NOT DEAD.
I am a researcher. A painter. A writer. A campaigner.
I AM NOT DEAD.
I have bad days, perhaps sometimes a wee brain bleed, or an infarct, perhaps another little bit of brain tissue dying. But
I AM NOT DEAD.
I enjoy painting. I enjoy being outside. I enjoy growing plants, eating what I grow. I enjoy cutting the grass. So
I AM NOT DEAD.
Am I?
….
Let’s look at the other side of this deal. My family.
Am I dead to them? No.
Have I died several times in the last ten years? No.
Do they worry about my downhill trajectory? Probably.
Do they grieve when they meet me? I don’t think so.
But I would understand if they did, as undoubtedly I am not the same person I was thirty, twenty or ten years ago.
(Actually I am a better person than ten years ago, when I was drinking and losing my job, and awaiting diagnosis.)
We are realistic. People die. And before that they develop diseases.
We cannot be young forever. Not you, not me, not anyone.
Am I seen as dying when I wobble over? When my blood pressure goes through the roof? When I get kidney cancer and have it removed? When I have a coronary bypass?
Nope. But of course my family were anxious.
I came out of each of these things the same person as before. But changed.
A person is a human being. An organism. If I breathe I am alive. I may be unable to read, or hear, or see, or walk miles, or speak fluently…but that applies to millions of us at any time.
Just because I have brain disease I do not cease to exist.
I AM NOT DEAD.
….
Thousands of us living with dementia spend many hours every week working to break the stereotypes and myths which stigmatise dementia.
To some we are mad. Demented. Or even possessed.
But not dead. Yet.
Nope. We simply have a disease in our brains.
When we are given a diagnosis we are often told we have up to seven years to live, and we should prepare to die.
Some people do die within a few years. But most do not. And many do live on enjoying their lives, albeit in different ways from before.
There are far too many people, though, whose dementia is seen – by themselves and by others – as a disabling termination of life. They withdraw. They give up things they have enjoyed. They become fearful of going out in public.
And that is why so many of us campaign to change the historic assumption that we are good for nothing but being sat in a corner with a television in front of us.
A charity that lauds itself as supporting people affected by dementia, that says it provides meaningful support, should not promote the Dementia = Death myth.
A charity that claims it works to establish a world without dementia is making stupid, unachievable claims.
Life is luck. Life is choices. Life is dealing with whatever comes your way.
Do you live well?
Do you eat well, drink well, exercise well, speak well, sleep well…?
Many of us living with dementia avoid the phrase ‘living well with dementia’. We prefer living as well as we can with dementia. Or living as we choose with dementia.
And I venture to say that few, if any, people live well all the time.
We face choices continuously, circumstances that are not of our choosing, situations which luck presents us.
And by luck I mean just random flipping of coins. Which side of the road to walk? Whether to have porridge for breakfast? To see a GP? To have another drink? To take that job?
And people get run over, become alcoholic, are knifed, get cancer, find true love, walk their dog…every day.
Life happens, and we have little control over it, except to make each choice as it presents itself, and hope for the best.
So living well? Nope, but doing the best we can in the circumstances…yes.
And if we make bad choices? Who decides what is bad? We probably don’t know at the time, or we would do the opposite.
If we have capacity our choices must be respected. You may not like it, or agree with it, but it is mine to make.
Assisted dying? Drinking too much alcohol? Smoking? Not exercising? These are my choices.
And whichever I choose no one should be telling me I am wrong.
But they can tell me of the likely consequences, if they want to. So I can make a more informed choice.
They can nudge me. They can hug me. They can kindly disagree. They can help me…
With what I want.
So where does that leave us with social prescribing? That service which is being developed across most of the UK (not apparently in NI), which aims to…do what?
Hmm. To do what?
Why should someone else tell me what is good for me?
Well, they can’t, can they? But they may get to know me well enough to suggest how I might change my choices a little. Or they may come up with an idea that I hadn’t thought of. Something I might enjoy. Or that I used to enjoy but find hard now.
I think life should be about doing what gives you pleasure, satisfaction, agency…with the proviso that your choices should not be to someone else’s detriment.
Of course, you can’t always have what you want. 🎶
Life (again) gets in the way. Earning money. Looking after others.
And I have to admit that I have not lived my life for the most part in ways that in retrospect I have enjoyed. I have made some daft choices for bad reasons. Bad as in wanting to please someone. Or unable to face anxiety.
Looking back, I wish I had worked in nature somehow. Or that I had not been a mortgage slave for 30 years. Had more courage to strike out when I was young. Been an artist?
But life happened, and not as I would have wished in other circumstances. Pluses and minuses everywhere.
You do your best.
And if you don’t measure up…to what? To whose scorecard?
Social prescribing…?
Have a cuppa tea together. Talk. Listen. Understand. Develop trust.
Then help me to do what gives me pleasure (as long as it’s legal?).
Might be a tiny little thing. Might be a big one? But just make it possible.
Then I’ll sleep better, eat better, drink less, exercise even. I will be a happier person. More resilient to life’s buggery.
I’ll go to the GP or A&E less often.
I will live better.
I’ll still have dementia, and I’ll still have awful days, and gradually lose my cognitive facilities.
So life goes on. Ticking by, slowly, and things that fell apart begin to settle into a similar but slightly different pattern.
All is well. But everything is changed.
Wendy has died and we live on. For a while.
She is missed, and will continue to be.
And we will continue where we left off, though slightly, so slightly, different.
So…I have been thinking about assisted dying.
Wendy’s third book, and her final blog, have stirred up debate and, in some, a commitment to get the law changed. I am unsure what I think. Except that every person should have the right to do as they please with their own life.
I am not religious, and I do not subscribe to beliefs about God’s purpose or plan. (And whose God?)
I equally don’t think we are predestined to a given life and death. And if someone dies I don’t see it as anything to do with a God or a religion.
Life is accidental.
Take your life narrative apart, analyse it. Find the reasons why anything and everything happened, why you made every choice.
There are innumerable paths each of us could take. Some decisions are made for us, mostly in childhood, but most are accidental, just because we were there, at that moment in time, and it made sense for some reason to do or say what we chose to.
We might choose to go out shopping one day. At what time? Where? In what order?
We might meet any one of many people in our neighbourhood, who just happens to choose to be there at the exact same moment.
We might skirt around them, or we might bump into them. We might smile and say hello, or we might have other thoughts and turn away.
Time passes, and we move like wriggling tadpoles through the fluid world that surrounds us. A current may drift us this way or that. A heron might peck us out for dinner.
The universe was created by a huge explosion of supremely compressed dark matter. We don’t yet know how this happened, but we know the consequences, that led to our own singularly inhabitable planet amongst billions.
Perhaps not singular. Chance would have us believe that there must be others out there, quite possibly at the same stage of evolution from that big bang.
Our sun will one day implode and become another black hole. And we will be finished.
And until then we live our unique, accidental lives.
Some die early, some late. Some are killed by accidents, some by design, though perhaps by accidentally becoming connected to their killer in some accidental way.
The best way we can live our lives is through humanist empathy and compassion.
No one is designed before birth to be good or evil. We have a choice, but each choice is conditioned by our environment…where we are at that moment, where others are, how we feel just at that moment…
We grow into who we are, and we continue to be changed by the accidents of living which happen every moment. We never stop growing. We never stop changing.
We are capable of infinite change, infinite good and infinite evil. We always have choices to make, and sometimes accidental living makes those choices hard to get right.
But then, what is right? What is wrong? What are these indefinable mysteries?
That’s where religion steps in, to provide us with the code for living. To prevent anarchy.
Is it anarchic to want to stop living?
No. It is simply a decision that seems right at a particular moment in a lifetime of accidental choices.
Why should anyone be able to stop me making that choice?
One problem with assisted dying comes with the method. If you need help, what are you doing to the person who helps you? Are you asking them to help kill you? How will they live with that memory?
Assisted dying is…assisted. So someone is assisting you.
And then, how do we define the difference between assisting someone to die of their own choice, and helping someone to die against their will?
I don’t pretend to have answers to these awkward questions.
I just think it is intrinsically not wrong to decide you want to die. The instinct to survive and live is so strong that choosing death will always be the only option that a person can envisage when making that choice.
You might argue that making a choice to die is so fundamentally unnatural, against the natural order of life, that if you make that decision you must by definition be insane. And therefore you must be ‘saved’ from yourself.
I don’t think we have the right to decide whether what another person believes is right or wrong.
And oops, here we go again, into right and wrong. Moral and immoral. Good and evil. Sane and insane?
Perhaps it depends on whether their choice has an impact on another person. Or many persons. (How many?)
Perhaps it depends on what the impact is? Their death? Their sadness?
All ways round, perhaps we humans simply cannot face having to define all these foggy impenetrables so we simply take the easy road…and we just say…
When great trees fall, rocks on distant hills shudder, lions hunker down in tall grasses, and even elephants lumber after safety. When great trees fall in forests, small things recoil into silence, their senses eroded beyond fear. When great souls die, the air around us becomes light, rare, sterile. We breathe, briefly. Our eyes, briefly, see with a hurtful clarity. Our memory, suddenly sharpened, examines, gnaws on kind words unsaid,promised walks never taken. Great souls die and our reality, bound to them, takes leave of us. Our souls, dependent upon theirnurture, now shrink, wizened. Our minds, formed and informed by their radiance, fall away. We are not so much maddened as reduced to the unutterable ignorance of dark, cold caves. And when great souls die, after a period peace blooms, slowly and always irregularly. Spaces fill with a kind ofsoothing electric vibration. Our senses, restored, never to be the same, whisper to us. They existed. They existed. We can be. Be and be better. For they existed.
george rook 