Demography: Interview

TEDGlobal 2012: How I’m preparing to get Alzheimer’s

Don’t be scared of dementia, prepare for it, says global health expert and TED Fellow Alanna Shaikh, who is taking specific steps to ready herself.
Alanna Shaikh, global health expert and TED Fellow explains to the TEDGlobal 2012 audience how she .../ Credits: YouTube TEDTalks
There are 35 million people globally living with some sort of dementia and by 2030 that number is expected to double to 70 million, Alanna Shaikh told the audience at TEDGlobal 2012. Dementia scares us so we tend to react by either denying that it’s happening or fighting to prevent it happening. She is taking a third way.

Allianz Knowledge: What made you decide to prepare for Alzheimer’s?
Alanna Shaikh: My father has Alzheimer’s, and it is early onset Alzheimer’s which is thought to have a slightly stronger genetic component. There is pretty powerful evidence that it runs in families. My father lives with us and is very much part of my life. That got me thinking that this could easily happen to me. It just makes you think of your own future.

He was a college professor who spent his life devoted to teaching people. In some ways this is the last lesson he’s teaching me, what it is like and how I can prepare myself.

Did your father prepare himself?

He prepared himself emotionally and had very intense talks with us about what he wanted and didn’t want for his future.

After doing this talk about half of TED has come to talk to me about relatives with dementia and one thing I say to everyone is: talk to them about it, find out now what they want and what they need when they can’t tell you anymore. The more you learn the more you can do right by them and be comfortable with the choices you are making.

How did you start preparing yourself?

It was a combination of internet research on what it’s like living with dementia and just looking after my father and seeing what was hard for him and what made things better.

For example, my father was a college professor, an intellectual with no hands-on hobbies. They say when caring for a male patient give them toy tools, nuts and bolts to sort, or a piece of wood and sandpaper to smooth it with. None of that worked for Dad because he’s not that kind of guy.

The only thing we found to keep him busy and happy was paperwork. He knows what forms look like, so he signs his name on all the lines and checks all the boxes and fills in numbers. It is all gibberish but it keeps him busy.

What activities are you doing?

I don’t want to end my life filling out forms. So I am learning hands-on hobbies so I will have something I can do without any conscious effort and feel like I am doing something. I am learning origami and drawing more and I am trying to learn to knit.
Another thing is that my father lost his sense of balance and became very shaky. That is a common symptom so I am doing yoga and tai-chi to try to enhance my sense of balance. There is no research on this but I guess if my sense of balance is better to begin with I will have more time as a mobile person.

What does the current research say about preparing for the worst?
There is a lot of research on prevention and so far there are three things they’ve found that help: daily physical activity, keeping the brain active, and eating a diet low in saturated fats. However, my father was an intellectual who exercised daily and ate a diet low in saturated fats. None of that worked for him. Nothing is 100 percent effective, just a lot of stuff reduces your risk by 12 percent.

Is there anything else that you do to prepare?
The last thing I am doing is trying to become a better person. My father has been stripped down to his barest essence. He’s lost all his learned behavior and all that is left is who he is at core and thankfully that is a very patient, kind and loving man. He can be happy just watching my children play. He was always that person.

I am not like that, I never have been but I need to be. I need to make myself someone that kind and patient and that loving. I am trying although I don’t really know how to do that.

How have you brought your family into this preparation?
Firstly, my father lives with us so my children are comfortable with the idea he has dementia and what it is like so it doesn’t upset them. My son is six. Sometimes my father calls him by my younger brother’s name and my son has the best explanation for this.

He says: “I am a little boy that Papa loves and a long time ago Uncle Chris was a little boy that Papa loved. So of course we are sharing a name for him.” So it doesn’t bother him at all. In fact, I think he likes the sense of connection to his uncle.
Both my sons really enjoy the physical emphasis. They will draw pictures and I will fold them into origami boxes. The knitting my eldest doesn’t get, he doesn’t see the point.

With regard to this idea of being a better person I have told my husband that if I am having a conversation that is a bit gossipy or bitchy, don’t participate or let me go down that road.

Are you spreading your message of preparedness elsewhere?

So far it is just my story. I want to talk about my Dad, and this is the best and most important story I have to tell. So many people have said they never thought about it this way and so now I am thinking that maybe it needs to be something bigger so that is the next thing I have to figure out.

People often tell me I can’t believe what you are doing but the thing is everyone can do it if they had to. We are all strong enough.

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