This is an edited version of a speech I gave today to the Shropshire Disability Network.
Dementia is a generic name for symptoms resulting from brain disease.
Depending on what the disease affects, your brain may shrink, neurons may tangle and stop transmitting, and very specific functions may work less well or not at all.
There are well over one hundred different diagnoses for dementia, the most common being Alzheimers, vascular, dementia with lewy bodies and frontotemporal lobe.
But everyone is affected differently. Everyone’s symptoms are different.
Once you’ve met one person with dementia…you’ve met one person with dementia.
In my case….about six years ago I realised I was having difficulty organising my work, remembering what I’d said to whom, at which meeting, forgetting names, taking a little longer to explain myself.
I was working part time, having resigned from a full time job with stress. My doctor assessed that I was stressed. And that my cognitive impairment was related to work stress and depression.
I had visited the memory service when I was unable to work full time, and had a brain scan. But the diagnosis at the time was depression and stress.
Later, in my part time work, I started to use my own iPad for recording and organising everything I did. Every conversation was noted, every meeting summarised. Every appointment recorded. There for me to check regularly and frequently. I managed.
But I could not grasp the explanations of a complicated system that my team used in their work. Time and again they explained and I just could not get it. And remember it.
Eventually that job came to an end, for complicated reasons, and I asked my GP – for the third time – for referral back to the memory service for assessment for dementia. My wife and I knew that I was not functioning properly.
I remember having to have silence in the car trying to navigate in France on a family holiday. I could not work anything out if there was music or conversations going on. That has not changed!
It took a day and a half of tests and a brain scan to come to a diagnosis of mixed dementia….Alzheimers and vascular. You see, I have a fairly high IQ, a degree and professional qualifications, and I compensate for my reduced functioning. So most people don’t think I could possibly have dementia.
They say…”well if you’ve got dementia I must have too. I lose my keys all the time. I can’t remember people’s names.” Etc etc.
You see, people think (and I include GPs) that dementia is about memory difficulties. And they think you only get the brain disease that results in dementia when you’re old, in your seventies and eighties.
So, what is the impact of this brain disease on me and others who live with dementia?
I do have difficulties with words, especially with people I don’t know well. I can’t process incoming signals as fast as you, and it takes very little distraction to put me off my stride.
Hence, I can’t have music and conversation at the same time, or TV for that matter.
If you ask me something I’m not expecting I may not be able to answer. I have to be zoned in. I have to find the bit of my mind that I need for a particular reason. Then I’m ok. It takes time for my brain to find a route through to the memory or the thought that I need.
You see, if you’ve got billions of cells in your brain, billions of neurons that link up in billions of different patterns to create billions of memories and calculations, if a few million go down it might be a very small proportion, but that tiny, particular function will not work as well or as fast as before.
So you slow down. Conversations have pauses. Listeners have to give me time to work out what I want to say and then say it. I tend to avoid starting conversations with people I don’t know at parties or meals together because I can get foggy after the usual cliches. And if they ask me about me I can stick completely.
I find I make mistakes judging distances, steps, changes in floor level. Dark patches or stripey patterns fool me and I may lose my balance, or miss a step. Or just feel discombobulated.
Occasionally I lose touch with where I am. Disorientation. The first time it happened I was shopping in Aldi. For about ten seconds I hadn’t a clue where I was. Then it came back. Doesn’t happen often thankfully.
I cannot fix names in my memory. Well. I can sometimes fix them, but many names just won’t stick. So, a PA at SATH recently told me her name several times in the space of one afternoon. I tried and tried to fix it. But it just went. Flew away. And there’s a plant I cannot remember. Euphorbia. I have to find ways round to find it. Or just point to it and wait for my wife to complete the sentence.
I have almost lost my sense of smell. That’s both good and bad. I would love to smell the freshly cut grass at home, and flowers and roses, or damp woodland, walking with my dog. But I also cannot smell the less attractive smells…which I’d better not name.
What is the impact of brain disease on my life?
Unlike a person I met recently (who ought to have known better) I don’t regard it as sad. It’s not ended my life. It’s not a death sentence.
It has merely slowed me down a little. I can still do everything I could four years ago. But I do now make choices that I wouldn’t have thought about before.
For example, if I can I avoid crowded places, like noisy restaurants or pubs or parties. I prefer to invite two or four friends round for a meal at home, where I can control the environment and can talk and listen easily.
If I do have people around when I’m cooking I ask them to go elsewhere while I cook. I can’t think about what I’m doing and have loads of noise and conversations going on around me.
I don’t drive in the dark. It’s to do with lights in my eyes, and flashing, which just disorientates me.
But the biggest impact has been through meeting a lot of lovely, enthusiastic people who also live with dementia and work to raise awareness and improve support, around the country. I really enjoy meeting up now and then, perhaps in London or North Wales, or Shrewsbury.
I feel excited to work to improve life for people living with dementia. It’s given me a new challenge and every time something goes well I feel tremendously pleased. And vindicated.
Because sometimes you can feel quite alone, and it’s really important to be reminded that others think the same and are working to improve life for people living with dementia.
Twitter and Facebook are tremendously helpful in sharing information and keeping up with what’s happening around the country.
I am lucky. Really. I got my diagnosis quite early on in the progress of my brain disease. So I have lots of time to do things I planned for later in life, and to be active and engaged in the community.
I don’t regard it as sad that I’ve got dementia. It’s shit, but it’s just life, just like getting cancer (which I’ve also had) or heart disease (which I also have).
I’m not always optimistic. Far from it. I have black days. Black dogs. But doing stuff to improve people’s lives is mostly rewarding and even fun.
I’ve started two DEEP groups, in Shrewsbury and Church Stretton. These are just social meeting groups for people living with dementia to meet, chat, share experiences and information. And to have someone listen to them.
The impact of these brain diseases on many people living with dementia is disempowerment. One or two people who come to the DEEP groups speak of being told they are useless by their family members, or having their wives speak for them all the time. I see men just stop talking because they have given up, and they know their wives will just take over. Or not wait for them to find their words. When we meet away from family and Carers we open up. We share what we actually feel. Often frustration and bloody annoyance.
Of course, it’s not easy for spouses or other family members. It’s bereavement. For both sides. But we really need to provide support for people living with dementia, and training and support for their spouses and families. There’s a great little training course called “getting along” which I’m hoping to bring to Shropshire soon to help couples get over these difficulties.
Now let’s think about disabilities.
Let me quote from a DEEP guide to dementia and rights…called Our Dementia, Our Rights.
“Many people find it hard to think of their dementia as a disability, and are understandably reluctant to take on another ‘label’.
The fact is that dementia is counted as a disability if it causes “a physical or mental impairment which has a substantial and long-term adverse effect on your ability to carry out normal day-to-day activities” (Equality Act 2010).
Likewise, Article 1 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) states that “Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments, which, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others.”
The word ‘disability’ is therefore not a stigmatising label imposed upon individuals. It is just a means to an end, a tool.
Another group–people with mental health difficulties–don’t consider themselves as disabled either, but they have made very good use of the UN Convention to claim their rights.
So, even if you don’t think of dementia as a disability, the law does define the impairments it may cause in this way–and this can be to your benefit.”
I don’t think of myself as disabled.
There are things I cannot do as well or as easily as ten years ago. And my symptoms will get worse. There’s no question about that.
But am I disabled?
I say no. I still have plenty of abilities. I am able to do whatever I want. I can take risks. I can cook. I can walk up hills. I can shop. I can work with directors of NHS trusts. I can speak at conferences, organise DEEP meeting groups, chair a patient panel at an NHS Trust.
It just takes a little more effort and organising than ten years ago.
But I do think that the legal definition of disability is important because it allows people to use the law to influence change. So I accept that I am, by law, disabled, because that is the way we people living with disease or physical impairment can get equality of access and treatment.
But please don’t let “disabled” define you. Disabled is just a word that allows us to get some benefits (though that’s increasingly difficult) and to be guaranteed certain rights.
Intrinsically, we are not unable to do things, to live our lives as we choose.
We simply are not perfect. But, you know, no one is.
Everyone has impairments from perfection. Whether it be intellectual or physical.
I want everyone in Shropshire and Telford to simply be accepted for being people. We have incredibly diversity.
I hear people say, time and again, “of course, we don’t have diversity in Shropshire”. What they mean is, we’re 99% white Caucasian.
But we are all different. Every person with brain disease is different. Every person has different physical abilities. Every person has different life experiences, memories, family memories, personalities…
We have phenomenal diversity. So let’s celebrate diversity in Shropshire and Telford.
We all lead our lives. We all make choices. We all take risks. And we all have huge amounts to contribute to the community.
I welcome our differences. And I won’t be defined by dementia.