More than 2,000 in Shropshire could have undiagnosed dementia
More than 2,000 older people in Shropshire and Telford may be living with undiagnosed dementia, according to estimates by the NHS.
Figures collected by GPs for February show there are 4,716, people over 65 who have been diagnosed with some form of dementia. But estimates by the NHS, based on the age profile and gender of patients, suggest that the real figure may be 6,801.
That means an estimated 2,085 pensioners living with a debilitating illness that has not been formally recorded by their doctor.
George Rook set up the Shropshire Dementia Action Alliance after he was diagnosed with the disease. Here we tell his story.
Standing in the middle of a supermarket George Rook has to stop. Confusion has overcome him. He doesn’t know where he is or why he is there.
“I would have moments of disorientation where for a few seconds where I didn’t know where I was or why I was there,” says the 67-year-old.
Dementia is an incurable condition that many people experience, but which few people could spot in somebody they saw in the street.
It has grown in prevalence in the UK since Barbara Windsor’s husband Scott Mitchell announced that the Eastenders star had Alzheimer’s disease last year.
George has dementia, and is describing one of his early symptoms.
“It can happen at any time at all and it first happened to me in a supermarket, but has happened a number of times,” he says.
“I can’t explain it. Your brain just stops being able to process for a short time.”
George lives in the rural village of Lyneal, near Ellesmere, where he is surrounded by rolling green fields and his well-kept garden.
“I like being out in the garden,” he says, moving a wheelbarrow. “We’re getting everything ready for my daughter Harriett’s wedding in June.”
George is a family man. The walls of his home are lined with pictures of his wife Jane and of previous weddings of his two sons William and Henry.
These are memories which he cherishes. But after his diagnosis, he know he must enjoy them as much as he can now.
George was a former chartered accountant, English teacher and school businesses manager before retiring.
“I was aware my cognitive functions weren’t were not doing what they should be and I was struggling at work,” said George. “It got to the stage where I couldn’t remember who said what, I couldn’t remember any names. It made life very difficult.
“Just organising myself I was finding more and more difficult.
“I had been diagnosed with mild cognitive impairment which is sort of a precursor to dementia, although doesn’t always lead to it. So things weren’t quite as they should be.”
In 2015 he was diagnosed with vascular dementia and Alzheimer’s Disease aged 63 after numerous visits to the doctor.
“When you get diagnosed you think you know what is going to happen because the stereotype is of a person unable to think, talk, eat or do anything,” he says.
“But actually that is a very late stage, but when you get dementia you don’t know that. You think your life is over.
“We often call it bereavement because you lose what you have been looking forward to and your partner loses the person they knew and what they were looking forward to too. You work all your life and think right, now we’re retired we can have 20 years doing a bit of travelling, or whatever you want to do. But suddenly you realise you might not be able to do that. It is a bit of a shock.”
George and Jane had planned after retirement to go travelling around Europe in a camper van, and instead of waiting until she had retired they just went and did it for two months.
Because George had Alzheimer’s disease alongside his dementia he was eligible for a drug Donepezil.
“It doesn’t stop the disease, it doesn’t slow it down in any way but it makes the rest of your brain that is still healthy work much better and much faster so it compensates,” he said. “It helps about 50 per cent of people. For me it was within the first 48 hours of taking it. I had woken up and come out of a fog.”
If you didn’t know George had dementia, you wouldn’t think he had talking to him. He speaks well on the subject and is clearly very researched in the area.
George set up the Shropshire Dementia Action Alliance, which also incorporates Telford, and is still the chairman now.
“I got a group of people together I thought would be interested in making towns more dementia friendly,” he says. “I have been donating my life to raising awareness of dementia, working to improve the care and support for people with dementia and their carers after diagnosis and not just right at the end.
He is keen to raise awareness of the different ways people are affected by dementia.
“Healthcare staff get very little training in dementia, so staff in hospitals and local practices don’t understand it,” he says. “They only know what they’ve met and seen in the media, and that is nearly always old people in the late stage.
“The brain disease which underlines dementia will be there for something like 30 years before it shows itself. Because you have so many brain cells you can lose lots and lots before you really notice it and it’s only when the symptoms become repeated and noticeable that you actually then start thinking about going to a doctor. When it impacts on your day today.”
George says that it is important to be aware that not all people with dementia are all elderly.
“I have young onset dementia, which is when you get diagnosed before you’re 65,” he said. “Most people get and show signs of dementia when they are in their 70s and beyond. But for those who are younger, they may still be working and wanting to work and have very different interests.
“They are still more physically capable of being able to do what they want so the dementia interferes in a different way. It can affect you in so many different ways. It’s not just about memory, but the way your brain processes information and everything around you.”
George says he can hold a conversation perfectly well, but it is when he is given a choice he begins to struggle.
“If we go to a pub and someone asks me what I want it takes me a long time to make a decision because I can’t weigh up the choices quickly,” he said.
“The speed at which you deteriorate varies enormously. Mine is very slow, but I have noticed in the last few months that my ability to remember names has got much worse.”
George says he has moments that would seem “silly” to other people. One of the things he does is often instead of putting loose tea in a tea caddy he will just put it straight in the pot.
“Last time I put butter in the tea pot,” he says. “It’s because unless I think about everything I do I may do something I didn’t intend. You have to think before you do anything. It’s why it gets more tiring when you have dementia because you’re having to work harder to make sure you don’t slip up.”
While he is functioning well at the moment, George accepts his dementia will only get worse.
“There is only on way this is going to go,” he says.
“What do I think about the future? For a long time I haven’t thought about it. I’m not near it now, and I’m not thinking about it. Having said that the last month or two I have started thinking about it as I have found myself going down a bit.
“A number of things are getting a bit worse at the moment and I’m getting tired. I have started thinking about the future and I don’t particularly like what I see. If you think about it too much you get quite depressed, anxious and tearful at times.
“What I think about most is withdrawing. I find it harder to think outside my head.
“As it develops you become more internalised. Not an hour goes by I don’t think about my dementia, I’m always thinking about making sure I don’t do something wrong or forget something. It invades your mind all the time. As it gets more difficult to process things outside your brain, what you see what you hear, you become more introspective. What I see in the future is not taking part.
“When my family come at Christmas or Easter, I feel I can’t take part anymore because I can’t keep up, I can’t deal with the noise, I can’t follow conversations. I find that very depressing. I look forward to them coming, but I can’t enjoy it when they’re here.”
Despite being excited for his daughter’s wedding in June George admits being worried about the day itself.
“I have to find a way of coping,” he says. “I’ll maybe need to go for a walk with the dog as people with dementia need a bit of quiet. That has an impact emotionally.”
But one thing is for sure, George is determined to make his time count.
How researchers are hoping to spot disease
There are more than 850,000 people living with dementia in the UK and this is set to rise to over one million by 2021, and while work is continuing to find a drug to help reverse or halt the condition, attempts have so far been unsuccessful.
With no obvious cure in sight scientists believe the key may well be in early detection. It was recently announced that the NHS is conducting trials of a five-minute iPad test to spot the early signs of dementia.
The test, which requires no medical supervision, uses artificial intelligence to assess brain function.
Participants are shown about 100 photographs and asked whether they contain an animal. The images appear for a split second.
Some of them clearly depict an animal, but others contain one that is less obvious, or no animal at all.
Possible abnormalities, signalled by differences in reaction speed and accuracy, can lead to a specialist referral long before the instances of memory loss that are the focus of tests now.
A study examining the iPad test said it may be a more effective tool for detecting early signs of dementia than existing pen-and-paper assessments.
But another indication which could help with early detection is said to be in the sense of smell, and there is suggestion smell tests may become routine in doctors surgeries, helping identify older adults who are at greater risk of developing dementia.
The sense of smell is known to deteriorate with age, but researchers have previously found it might also indicate health problems and deteriorating health before it is recognised by doctors.
Dr Honglei Chen, from Michigan State University, US, said: “Poor sense of smell becomes more common as people age, and there’s a link to a higher risk for death.
“Our study is the first to look at the potential reasons why it predicts a higher mortality.”
Dr Chen’s team analysed data from almost 2,300 men and women who took part in a major US investigation called the Aging’s Health ABC Study.
Part of the study involved completing a smell test of 12 common odours. The participants, aged between 71 and 82, were then classified as having a good, moderate or poor sense of smell.
Compared with those having a good smell sense, people in the “poor” category were 46 per cent more likely to die after 10 years and 30 per cent after 13 years.
The association was almost unaffected by gender, race and lifestyle factors.
But to the surprise of the scientists, poor sense of smell even predicted earlier death in healthier participants.
The findings are published in the journal Annals of Internal Medicine.
While poor sense of smell is an early sign of Parkinson’s disease and dementia, and linked to weight loss, this only explained 28 per cent of the increased risk of death.
Robert Howard, Professor of Old Age Psychiatry at University College London, said: “The study showed that the risk of dying in the next 10 years was increased by about a half in people with impaired sense of smell and that only some of this risk could be explained by the development of Parkinson’s or Alzheimer’s or by weight loss.
“Most of the increased mortality risk could not be explained by associations with specific illnesses such as cancer or cardiovascular disorders. This raises the interesting possibility that loss of smell may be a marker of generalised ageing and should be taken seriously by older people and their doctors.”