Dear Alzheimer’s Society

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?