Preparing yourself for Alzheimer's

My father had Alzheimer's disease. He started showing symptoms about 12 years ago, and was officially diagnosed in 2005. Towards the end, he didn't know where he was or what day it was. But even by the time he died last summer, aged 73 and rarely speaking, he still knew his family. I loved him very much, and spent the last decade watching him disappear.

Dad was not alone. There are more than 35 million people in the world living with dementia. By 2030, that number is expected to have doubled.

Dementia is scary. The large numbers of people who get it, the shaky hands and confused faces of people living with it - they frighten us. We want to believe it won't happen to us. Dementia robs the sufferer of all memory and understanding, and at present there is no cure. No wonder we're worried.

It's not surprising that we seek ways to reduce our risk of developing Alzheimer's: an entire industry has grown up around prevention, selling products such as antioxidant vitamins and brain-enhancing video games. Some of the official advice - to exercise every day, eat a healthy diet, keep the mind active - clearly makes sense. It may even have a preventative effect. But the studies on lifestyle and dementia are all observational, which means that ''proof'' is shaky at best.

Then there's my Dad, Mahtab Shaikh. He was a bilingual college professor who for 30 years taught human anatomy and physiology in upstate New York, where I was raised. His hobbies certainly kept his mind active: chess, bridge and writing opinion columns. He kept to a healthy weight. He ate a lot of chickpeas. He did pretty much everything you can do to prevent Alzheimer's.

I keep my mind active, too, both in my work (in international development) and in my daily life. I watch what I eat; I take my cardiovascular exercise. But that does not mean I'm safe, because Alzheimer's, especially the early-onset type that my father had, tends to run in families. And while there are no firm numbers, it is clear that those who have a parent, brother, sister or child with Alzheimer's are more likely to develop the disease.

So at 38, I am getting ready. Instead of just hoping it won't happen to me, I am preparing in case I get Alzheimer's disease.

When my father was diagnosed, he did his best to prepare himself. He loved to teach. He was my teacher long after I finished school and left home. He taught me to drive, to play chess, to do maths in my head. He taught me bigger life lessons, too, about trust and love. This, then, is his last lesson for me - what it is like to live with Alzheimer's.

I am focusing on three things, based on what I learnt from my father and what I have read in the medical literature. First, I'm changing the kind of things I do for fun. Second, I'm building my physical strength. And finally, I am trying to become a better person.

With Alzheimer's, as cognitive capacity fades, there are fewer options for entertainment. Books are almost impossible to read. Television is too confusing. Chess would be out of the question. This is why dementia carers are trained to engage people in simple, hands-on activities that don't have a required end point. And, as I've seen with my father, the most familiar things are the last to go: as long as he could hold a pen, he could manage an anatomical diagram.

I have realised that, as things stand, there is nothing much that carers could do for me. I'm my father's daughter - all my hobbies are of the intellect. I read, I write, and I think about global health. What would my carers do - give me charts and graphs to colour? Academic journals to scribble in the margins?

So I'm learning new, hands-on hobbies. I've bought myself some good paper and nice pens and am starting to draw, often with my sons Zach (aged seven) and Sam (almost two), and not that well. I'm learning to knit: I love being able to produce something (even if, so far, it's only a practice square) out of a ball of yarn. I'm teaching myself basic origami, making small boxes and filling them with gifts for friends. All of which helps me sleep better at night.

The way I see it, the more my hands learn now, the more useful they'll be later, when my brain can't run the show. Research shows that people with dementia who are occupied with activities are both happier and easier for their carers to look after. It may even slow the progress of the disease. That's my goal: to be as happy as I can, as long as I can.

Alzheimer's isn't just mental - it's physical, too. Coordination and balance start to slip. Muscles develop tremors. People become uneasy on their feet and start to move less. This starts a vicious cycle - they lose muscle mass, which in turn makes them move even less.

The better someone's physical condition when Alzheimer's hits, the longer they can stay strong and active. There's not much research to back me up here, but my second task is to build muscle and improve my balance, to give me more time with full mobility and more strength.

Like my hobbies, exercise wasn't a priority for me before my Dad became ill. Now, though, I have started doing yoga and t'ai chi to build strength and balance. Finding emotional balance and feeling more centred from doing so, has been a welcome and unexpected side effect.

The third thing I need to do is the most difficult. I need to become a better person. I spent 10 years watching my father as he was stolen from me. I saw his intellect torn away, his humour removed, and his language skills eroded. But I also saw that he still loved us. He loved me, my mother and my younger brother Christopher. He loved his carers, and he loved my little boys. When Zach told him long, excited stories, Dad didn't understand a word, but he still knew how to nod and smile encouragingly. If Sam handed him a toy, Dad would smile lovingly, thank him, and give it back.

When he lost everything he had ever learnt, every behaviour the world had taught him, my father's good heart still shone through. Of course, he sometimes got angry and scared and confused, but he continued to love us, and he was always kind. That's what he was his whole life, and that's what he was at the end. And that's what I need to learn. I need a heart true enough to survive being stripped of all else by dementia.

I don't want to get Alzheimer's. Nobody does. And I'm doing all I can to prevent it. But, like many misfortunes, dementia cannot be prevented. All one can do is reduce the odds, and mine are still worse than most. If it comes for me, though, I'll be ready.