Dementia is the umbrella name given to symptoms that result from brain disease (or acquired head injury but I am not going to talk about that.)
Brain disease starts to develop around twenty years before the symptoms become apparent. And it will usually be several years before these symptoms become such that you seek a diagnosis.
When you go to your GP some will tell you it is not worth getting a diagnosis as there is no cure. They will refuse to refer you, and may tell you it us just getting old and they often lose their keys too.
More GPs will now refer you if you tell them a few times that you know there is something wrong and really want to know what it us.
You might still be working and having difficulties which your employer is picking up on. You might be frightened that something is wrong, and it might be cancer, or a stroke, or something.
GPs can only and should only diagnose very obvious, probably later stage, dementia. They should always refer you to the local memory service.
67% of people estimated to be living with a brain disease that causes dementia are now diagnosed, up from 40% five years ago. But there are big variations around the country.
When you are given your diagnosis you may be invited to take a family member or friend with you. You may be given the news sympathetically. You may even be given a cup of tea afterwards so you can take the news in.
More likely you will be told you have dementia and that a memory service worker will visit you in a few weeks. You will leave in a state of shock probably, however much you are expecting it.
Just in a few places you will be able to talk to a person living with dementia already, share your fears and other feelings, and a cuppa. In a few more places you might have a dementia navigator or support worker with you at diagnosis, to talk it through afterwards.
Then you will go home in a maelstrom of thoughts and fears.
When you get a visit a few weeks later from your memory service worker you will be given a bag of leaflets. They will be information about dementia, about the type you have, about national charities, and about how to live healthily to delay progress of the disease.
There will be leaflets about benefits, driving, how to avoid risks.
Few, if any, of these booklets will tell you about support and groups in your local area.
You may be prescribed medication if it is appropriate to your disease.
And the worker will probably arrange to visit you again in six months.
And you will sit down afterwards and wonder what on earth to do next.
You might then be contacted by a multi disciplinary dementia support team, and someone come out to see you to see how they can help. The team would include a physio, an occupational therapist, a mental health nurse or doctor, a nurse, perhaps even an admiral nurse.
But you might not get this team support.
After a few months you may look around for groups that you could visit or join.
Or of course you might still be working.
You might google local support groups. You might find a dementia cafe, or a carers support group. Your memory service might run support groups.
And you might go along and enjoy it. Or you might find that those attending are at a completely different stage to you.
You might find that you don’t want to do organised activities, or look at old pictures, or sing old songs, or stare at people a lot further on than you are.
And you then might begin to realise that actually there is almost nothing for you. Almost no support in your area.
On the other hand, you might find that where you live there are dementia support workers who will meet you and talk things through with you.
You might find that there are peer support groups within reach, groups which are informal and chatty. And where you meet people at a similar stage to you.
At some stage you may be offered a care plan. It might be by your GP or the memory service worker.
It might be a list of your medications and illnesses, and your next of kin.
It might include a few personal goals, around keeping active.
It could be called a living plan, which you have written, with others. It could be about how you can get support to live as you choose and keep on doing what you enjoy and value.
A few months or years later your family carer might be finding life very hard. Your relationship, and their health, might be suffering badly. Your care giver might make contact, either directly or through your GP with your Admiral Nurse service.
Or you will more likely find that there are no admiral nurses in your area.
You may go into hospital, not because of your dementia.
And you may be frightened and confused. You will probably stay in hospital, if you have later stage dementia, for several weeks, because the hospital and social cate system cannot provide the right care to get you back on your feet.
“Length of stay
On average, people with dementia spend nearly four times as long in hospital following a fall and the resulting frailty from a fall and an extended stay in hospital can increase the likelihood of them being unable to return home.” (Alzheimers Society)
Later on you or your care giver might find that a dementia cafe and its activities would be a good thing. So your care giver would find one. Or not, as they are few and far between. If you do go you would be one of the 5% who actually go to a support group.
All of these options are available somewhere. But never all of them for everyone who wants them.
Come to the post code lottery room and see what us available in Nottingham. I have searched the internet and printed off sheets.
No admiral nurses.
Few dementia cafes.
No DEEP peer groups.
Do you get care plans that you have really been part of and that are useful?
Did you get a good supportive experience when you received your diagnosis?
Was your GP helpful?
There is so much to do. But we are going to change it.
We must have GPs who understand dementia
We must have a consistent model of good support after diagnosis.
We must all have dementia support workers or navigators to be at our side when we need them.
We must all have access to peer support groups, run by and for people affected by dementia.
We must all have admiral nurse services.
These elements of a support model must not be optional. Commissioners must not be able to choose whether to fund them in their area. They must not be able to ignore people who have terminal brain disease just because there is no cure.
We are people living our lives. Our lives are not over when we get the disease and the diagnosis.
We may gradually be unable to do everything we used to, but we are still human beings with human rights.
We may suffer at times, but we are not dementia sufferers.
We are not burdens on society or our families.
The disease is not terrible, or catastrophic.
It is just a disease you live with as best you can. And with good support and care you can live pretty well as you choose.