Alzheimer’s disease

Dementia and other disasters

By Alanna Shaikh | | 0 Comments |

A couple of people have pointed out that my approach to Alzheimer’s, as I outlined in my TED talk, looks an awful lot like disaster preparedness. That’s not by accident. My job shapes my personal life all the time, and since Alzheimer’s is a disaster waiting to happen to me, I took a disaster preparedness approach. The first draft of my speech explicitly referenced earthquakes, but June didn’t like it.

In a nutshell, here’s the disaster preparedness approach:

  1. Figure out what the most likely disasters you’re facing are.
  2. Take what steps you can to prevent them
  3. Estimate what kind of damage they could do
  4. Create resilience to help you respond to and survive that damage

If you’re worried about earthquakes, then you identify the most seismically active areas in your location, don’t live there, study up on the damage done by past earthquakes, and then pre-position first aid kits, emergency food supplies, and get training on search and rescue.

(That is the deeply simplified version; you can get a better explanation here.)

If you’re worried about Alzheimer’s – well, that’s your disaster right there. It’s the most likely one in my old age. I am eating low fat and exercising for 30 minutes a day as my prevention effort. (And I guess this blog counts as keeping mentally active.) I’m estimating potential damage by watching my father decline. He was always my teacher; this is his last lesson for me. And I’m developing resilience by trying to shape my body and mind into a person who will be happy and loving, even with dementia.

If you look at the TED.com comments on my talk (For the love of summer days and fuzzy puppies do not look at the youtube comments.), you’ll see a lot of people arguing that it’s insane to prepare for something that may never happen. You get that response when you’re trying to get ready for disasters, too. People think it’s a waste of time and money to get ready. (Yes, I’m talking to you Army Corps of Engineers.) They say that life is for living and probably it will all be fine.

People are always going to say that. Human beings are wired to hate thinking about future risks. If you prepare for a disaster that never comes, everyone makes fun of your wasted efforts.

In my own case, I answer this with the argument that my efforts toward dementia resilience are also enhancing my life right now. I like origami. I like drawing. I like yoga. I could have decided to needlepoint or juggle, but that sounds horrible. You can draw the same parallel to community disaster resilience. Seismically sound buildings also handle storms better, and they last longer. First aid kits are useful for more than just earthquakes. So is search and rescue.

You can build a life today that prepares you for a whole range of tomorrows.

What does this have to do with development? Well, global warming is going to bring us a massive increase in natural disasters. Disasters that will hit poor people the hardest, and keep low income countries from developing. Done right, poor communities can build resilience for the natural disasters of the future and improve their lives right now.

But we’re going to have to actually think about it first.

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Don’t build in a flood plain

image source: Andrew Ciscel

what we can’t do

By Alanna Shaikh | | 6 Comments |

 

 

 

 

 

 

 

I was at TED Global last week, and I gave a talk at TED U. (That’s the stage where a few attendees are selected to speak.) I talked about something I hardly ever mention on this blog – my dad, who has Alzheimer’s disease. The video went up on the web today. It’s intensely personal for me, but it now has 13,000 views. So it’s probably time to talk about it here, too.

Caring for my dad is an awful lot like aid work. I stare down a heartbreaking problem that’s far too big and complicated for me to solve. I divorce my emotions, quantify the situation, identity the things I can help with and learn to live with the pain of the rest.

My dad was diagnosed in 2005; I’d already been working in aid for seven years by then. I was ready.

For my dad, I hired an aide to keep him company when everyone else was at work. Then a night aide so he never had to be alone. My mom and I found soft clothes for him that he liked to wear (Dad was a college professor; he still doesn’t approve of jeans or t-shirts). I hired a massage therapist to come weekly. Last week, I got him a special apron that has zippers and Velcro and buttons to give him something to do with his hands. (He likes it, I hate it. It makes him look sick. As sick as he actually is.)

None of it really makes a difference. I love my dad and he is still dying of the disease he feared most.

Learning to live with the pain of what I can’t do is the hard part – in aid work, and with my dad. I always want to do more. And there are always limits to what I can personally give, and what can actually be done.

In my work, it’s all the people who don’t get helped. The woman who told me a doctor killed her baby. The people who aren’t in our target districts. The people who are in our target districts and get missed anyway. There is much more pain in this world than anything I can do to help, just like an activity apron and a massage aren’t going to make my dad get better.

I figure out the shape of the problem. I do what I can. I hurt like hell and try not to think about the rest. At home and at work. It’s life, right?

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As long as I am getting personal, that’s a picture of my dad and my son, from a few years back