NHS Choices asks: ‘Is there a cure for dementia?’ What it should say underneath, in enormous capital letters, is ‘NO, THERE ISN’T A CURE’.
Dementia describes a range of symptoms caused by a number of diseases. The symptoms can be reduced, for example by increasing the light level and drinking a glass of water. But while these interventions may help you better understand what is going on, they won’t cure the underlying disease.
The confusion about dementia is caused by several vested interests. When the university press office, driven by the need to demonstrate research impact, tells the media that they ‘discovered something in an animal that might eventually, under some circumstances, after a few years, if it works in humans and is not dangerous, contribute in an unspecified way to research into a cure for one of the symptoms that sometimes appears in one of the diseases that causes dementia’ — the subeditors edit it down to the headline: ‘Cure for dementia’. Hold the front page!
Patients and their families weep in front of me when they discover that what they read in the newspaper was misleading. After all, it is a bummer to know that you have got a stigmatising, fatal, expensive illness that may lead to you losing your liberty and dignity. To be faced with the fake prospect of a cure, which is only ever a ploy to sell newspapers to people, most of whom will never face this problem, is an unnecessary, disappointing experience.
Recent front-page headlines claimed about research involving fewer than 10 subjects: ‘Alzheimer’s disease may be infectious’ (the Independent) and ‘Alzheimer’s could be passed on by humans’ (the Times). Logically, because of the wording, both of these sentences are true. But as there was no evidence to support either proposition, it is not ‘news’ by any definition. Other misleading front pages include ‘Spicy diet can beat dementia’, ‘Cutting calories can beat dementia’, ‘Sleep to beat Alzheimer’s’, and a personal favourite of mine: ‘Grapes fight memory loss’. I didn’t know grapes could suffer memory loss.
What’s behind this? The dominant dementia culture, fuelled by the shared interest of advocacy organisations and government, catastrophises the predicted increasing numbers of people affected. This generates donated income and creates pressure to find a cure, though that’s a very distant prospect. Commitment to that research detracts from any focus on improving lives today or warning families of the impending shift of responsibility for caring for frail older people from the state to the family itself.
In the possible, but not inevitable, event that you or your parents get frail in the next 30 years, the state provision is going to be even less than it is now, simply because of the demographics. The most personally expensive condition of ageing you can get is dementia. You need to know what to do now, not wait for the grapes to work.
So what are the practical things that you can do? The good news is that there is a lot. There is not major research evidence for some of them, and each person is different, but put them all together and you’ve got a good chance of staying better for longer. Having said that, some dementia is just down to bad luck, so people affected should never feel guilty of ‘doing something wrong’.
1. Get diagnosed. There is not much medication that makes a difference, but you won’t get to try it if you don’t have a diagnosis. It also helps to exclude other fixable conditions that might be giving you problems. Doctors are sometimes shy of raising the question because they’ve got nothing they themselves can offer. Get past that problem the best way you can.
2. Exercise. Some dementia is caused by vascular disease and what is good for your heart is good for your head. Keep those blood vessels healthy and the oxygen that your brain needs will be kept flowing. Even people with Alzheimer’s dementia have some vascular damage so it helps everyone. If it involves other people, and being out in daylight, that’s good for delaying some of the symptoms of dementia.
3. Diet. The Mediterranean diet with a high fruit and veg content and the right sort of oils is highly recommended. It also helps with blood pressure, and anything you can do for physical health is good, so get your diabetes, depression, weight issues, or anything else you can under control. Apparently a glass of wine a day is good for you, but if you can’t stick to one, avoid strong drink as brain damage from alcohol is the only really preventable dementia. But drink plenty of water. Dehydration can mimic increased symptoms.
4. Socialising is very good for you, and anything else that gives mental stimulation helps. People with previous education seem to keep off symptoms for longer, and being bilingual has a positive effect. Extra brain capacity gives more resilience.
5. Things to avoid like the plague include smoking and anything that gives rise to concussion; rugby and boxing are dangerous, but it may be too late for this warning. At least stop smoking. Immediately.
6. Make dementia design changes in your house. Increasing light levels is the most basic, but there are loads of other things you can do. Dementia.stir.ac.uk has a dementia design information guide.
7. Naming the problem can let you make plans and turn to the people and organisations that offer help. Now is the time to sort your affairs, and get a power of attorney created so that you can relax and know that someone will make the decisions you’d like to make if you were unable to yourself. Talk to your family. Talk to them long before you have dementia so that if it ever happens you are all reasonably prepared for the options.
8. Avoid being admitted to hospital if you can, but if it is really necessary (say for an operation) insist on open visiting so that the stress of the event, which may be a tipping point, can be ameliorated by friends and family making sure you have good food, lots of water, medication, exercise and stimulation. Hospitals can make dementia very much worse. So stay clear if you can and bail out as soon as possible.
9. Make financial preparations. If you can delay your symptoms you make it less expensive overall, but assume you’ll bear most of the cost.
10. Find out as much as you can to help yourself — about the condition, finances and benefits, and the health and social care system.