Friday, 20 April 2012


When someone voices fears about becoming forgetful or confused, peopleoften reassure them that this is a normal part of ageing. But are they right?It is true that dementia is more common among over-65s, and some of usdo become more forgetful as we get older, or during times of stress or illness.But dementia is a different sort of forgetfulness. Many of us may momentarilyforget a friend’s name. But if you have dementia, you may forget that youhave ever met them before. Your memory loss will be more noticeable, andmay be accompanied by mood changes and confusion.Forgetfulness and confusion are not always signs of dementia, but it is veryimportant to ask the doctor to check them out. Drugs are available that canhelp people with certain forms of dementia. Other medication can help withsymptoms that often accompany dementia, like anxiety or insomnia. So if youaren’t diagnosed, you could be missing out. And if you don’t have dementia,your forgetfulness may indicate another condition – such as depression –that needs to be treated.After I came to the UK, my brain was not working properly. I used to go walkingand not come back, and when my wife asked me to go shopping, instead ofbuying eggs I would buy tea. I was very worried. The doctors examined meand gave me medicine. Since then it’s been much better. I still forget things –I wouldn’t say I’m 100 per cent – but I’m probably 70 per cent.I like reading, and we often go for three mile walks in the park. Sometimeswe visit the neighbours or we go to the temple, or shopping with the children.I used to grow a lot of vegetables in the garden – aubergine, cabbages andsweet potato – which we cooked in curry with rice.Our family is very close. We live with our son’s family, and I am never alone –there are always people around us. They understand that I have memoryproblems, but they don’t worry about these things. Our grandchildren arewonderful. In the early days, I used to carry them to kindergarten. Now theyare growing up.I am happy. I have had a really good life. My philosophy is to be happy withthe family – the future is good for us.Dementia is the name for a collection of symptoms that include memoryloss, mood changes and problems with communication and reasoning.These symptoms are brought about by a number of diseases that causechanges in the brain.The most common of these is Alzheimer’s disease. Alzheimer’s changes thechemistry and structure of the brain, causing the brain cells to die off. Thefirst sign is usually short-term memory loss. Other types of dementia includevascular dementia, dementia with Lewy bodies and Pick’s disease.Each of these diseases affects the brain in slightly different ways. For example,Alzheimer’s disease tends to progress gradually at first, while vascular dementiatends to progress in a stepped way.But a person’s experience of dementia will depend on other things too –the people around them, their personal circumstances, and the environmentthey live in. Dementia progresses in a way that is unique to each individual.People often think of dementia as a form of memory loss. And usually it doesstart by affecting people’s short-term memory. But it’s more than that: it canalso affect the way people think, speak and do things.Dementia makes it harder to do things because it makes it difficult to plan andlearn new activities, and interferes with structured tasks like writing. Dementiacan also make it harder to communicate. For example, the person might havetrouble remembering the right word or recognising who someone is.Dementia also affects people’s mood and motivation levels. This may happenif the disease affects the part of your brain that controls emotions. But evenwhere this does not happen, people with dementia can feel sad, frightened,frustrated or angry about what’s happening to them.Dementia can’t be cured, but there is much that can be done to help. Everyyear we understand more about dementia, and develop new strategies thatcan help to boost someone’s confidence and maintain their independencefor as long as possible.Dementia – that’s what they told me I have. I’m very forgetful, and I don’tsleep much. At first, I just put it down to working too hard or something. I getso frustrated. You go somewhere and you can’t even remember what you wantto buy. You just stand there in space, looking, wondering, ‘Is this the right place?’I have to write things down. Sometimes, even if I write them down I don’tremember them. But I tell my family where I’m going and things, sosomebody will ring me up and tell me what is happening. And my friendgave me a board to stick everything on.I go to a dementia café once a week. I think there is a stigma around dementia.I think people look down on you and say, ‘That’s a mad woman,’ or something.At the café it doesn’t matter who you are – everybody’s on the same level.The social side is very good and the staff are fantastic.I love singing – it lifts you. And if I feel down, I pray and talk to God. I askhim, ‘Why? Why am I like this?’ And then a scripture will come into my heador something, maybe one of the psalms. It is very, very comforting.Most of us have some image in our mind of what life with dementia lookslike. That image is often very bleak. So it can be surprising to learn that manypeople with dementia continue to drive, socialise and hold down satisfyingjobs. Even as dementia progresses, many people lead active, healthy lives,continue their hobbies, and enjoy loving friendships and relationships.Someone with dementia will probably have difficulty remembering thingsand organising themselves. They may forget an appointment or tell you thesame joke twice. But this may not stop them from doing the things thatmatter most to them.Medication may help people with some kinds of dementia. This is why it’simportant to go to the doctor as soon as you suspect there may be a problem.It’s a difficult step to take, but a diagnosis can open up many opportunitiesto help overcome problems and find better ways of coping.Of course, dementia does make it harder to do certain things. But with theright support and know-how, it is possible for someone with dementia to getthe very best out of life.Most mornings I have breakfast with my partner, Tony, then he goes offto work and I decide what to do with my day. I do miss work, but when Istarted my last job I just couldn’t manage it. I went to see the GP and wasdiagnosed with Alzheimer’s.Twice a week I go walking and I’m in an a cappella choir. I’m still driving,so I’m not housebound by any means. I make sure I keep using my brain.I read three or four chapters a day. I try not to watch daytime television,but I do like Radio 4. And if it’s a miserable rainy day I’ll always put on Sexand the City to make me laugh.We have systems so I don’t forget something. We have a whiteboard withreminders. When we’ve done a task, we stick a little spot next to it. Tonywill often phone and remind me to do things. I’m functioning very well,but everything is controlled. If I was suddenly thrown into Trafalgar Square,I wouldn’t know what to do.I’m certainly not in denial – I’d rather I didn’t have it. But I don’t dwellon it. To be able to drive, sing, use a computer quite happily – it’s not theend of the world. That’s been the most surprising thing about dementia.I’m still carrying on the way I always was. I’m just leading my life.A talented gospel singer, a loving family man, a keen walker and self-confessedRadio 4 addict… Clarice, Poopal and Caroline, who we meet in these pages,are living proof that people with dementia can live rich, varied lives.Clarice is a warm, outgoing woman who teases her daughters affectionatelyas they describe how they adapt family life to support Clarice’s dementia dayby day. Poopal is a quietly spoken, dignified man who is surrounded by a lovingfamily. He takes great pride in their successes in their journey from Sri Lankato London. Caroline is an engaging woman, with a wicked sense of humour,whose days are packed with social events. She enjoys close friendships and astrong, supportive relationship with her partner Tony.Sometimes, dementia can overshadow the other aspects of the person – thebits that really matter. Poopal, Caroline and Clarice remind us of the personbehind the dementia. They are three very different people, with just one thingin common: all three are living with dementia. But each is doing it in theirown way, and on their own terms.