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  Alzheimer’s disease

Posted: 15 Aug 2014 02:05 PM PDT

Alanna Shaikh at TED2013, about six months after giving a powerful talk about Alzheimer’s disease and the three strategies she was putting in place in case she should ever get it. Photo: Ryan Lash/TED

Global health expert Alanna Shaikh gave an unexpected and moving talk at TEDGlobal 2012, called “How I’m preparing to get Alzheimer’s.” In it, she told the story of her father’s struggle with the disease, and outlined some strategies she’d devised in case dementia struck her later in life, too. The TED Blog was curious: How is her experiment going?

While most of Shaikh’s goals haven’t exactly gone as planned, in the process, she’s had a lightbulb moment about how to think about dementia—and learned to be a better person, to boot. Here, a conversation about the relationship between kindness and health, and living an enjoyable life in the present while planning for the future.

What have you been up to since your talk went live two years ago?

I talked about three things I was trying to do to prepare for Alzheimer’s: physically preparing by becoming stronger and more flexible, cultivating hobbies that would stick with me through the illness and trying to change who I am to be better and nicer. What really succeeded, weirdly enough, is I honestly think I am a better person. By deliberately choosing to be kind over and over again, it seems to now come naturally to me.

What were you like before?

Very judgmental and critical. I was committed to being a good person, but I wasn’t particularly worried about being a nice person. One of my friends in college told me that his favorite thing about me was I always had something bitchy to say about someone. This is someone who loves me—he meant it as a positive. I don’t think anybody who’s known me in the last couple of years would say that now. Dealing with my dad made me realize how much nice actually matters. And kindness. I had never really thought about what kindness and niceness have to do with each other.

I’ve never thought about that. What is the difference between nice and kind?

Being nice is not making a fuss and letting things happen to you. Not protesting. Whereas kindness is about deliberately giving the best of yourself, and deliberately looking for ways to find the positive in things. The example I give sometimes is this: the office building I used to work in didn’t have enough elevators. So if you wanted to leave the building at any time between 5 and 6pm, it was just packed—the elevator would stop on every floor, it would take forever and it was all sweaty. There were these people on the third floor, and they were always laughing and flirting and holding the elevator for each other, and you’d end up crammed in the corner for five minutes while you waited for them to stop saying goodbye to each other and hugging and whatever. At the beginning, I was like, “Those damned idiots on the third floor—why can’t they just take the stairs?” And then I started deliberately thinking, “No, these are young people enjoying life.” And so I started to think of them as the happy people on the third floor, and then realized that they are just thinking about their lives, not necessarily thinking too much about what it meant to be crammed into the elevator while they said goodbye. I started to try to take that approach to everything, to really look for the positive perspective.

Sounds like generosity of spirit, in a way.

I guess so. Because I’m an expat, I move a lot. So each new place you live is a chance to be the person you are right then. I realized that people who know me where I’m living now in Kyrgyzstan think of me as this very funny, positive, kind person. I love that. It doesn’t feel fake. I think I really am that person now, and I love that I was able to do that. It was the hardest thing for me, thinking, “I can pretend that I’m nice, but can I really become nice?”

Have you thought about kindness and its role in healing and health? Do you think it’s better for us to be kind?

I’ve never thought about that before, but I’m sure it is. For one thing, I think it takes a lot less emotional energy to be kind. Think of me getting off that elevator thinking about the happy people around me, versus me getting off that elevator being all, “Grrrr.” It has to be better for my heart. It has to be better not to get all that cortisol revved up inside of me.

Alanna’s father in a happy moment, long after his Alzheimer’s had set in. Photo: Alanna Shaikh

There’s also the question of kindness in the healing professions — the idea that patients are more likely to respond well to compassionate doctors and healers who touch their patients.

I think that’s probably true. In my day job, I’ve been part of a lot of different trainings for physicians, and one of the amazing things we’ve discovered is that the part physicians really love is the interpersonal skills, learning how to talk to their patients gently and kindly. We started including that in basically everything we teach, whether we’re teaching infection control or HIV care or breastfeeding support or whatever. The first component is always, “How do you talk to patients so they’ll listen?” The doctors absolutely love that, because it turns out they’ve been yearning to connect kindly; they just didn’t have the tools. That is the first thing they see results from: talking to their patients differently brings them different results as medical professionals. It seems to bring better outcomes. Often, doctors are afraid that if they are kind they’ll lose their authority, or patients won’t take them seriously, so it’s valuable to have an outsider validate the idea that you can be a respected professional and still be kind and generous to people, and that you don’t have to be stern and harsh to be an authority figure.

Are you still doing the same exercises that you discussed in the talk?

The hobbies didn’t work out as well as I wanted. It turns out I only like making origami boxes, but I really have no interest in making any other kind of origami—zebras or cranes or anything. Everybody who saw the TED Talk gave me origami stuff. I have four books, I have all this paper — and I just make a lot of origami boxes.

That’s probably fine from a cognitive perspective. At this point, I can have a piece of paper in my hands, and be watching TV and look down, and I’ve made a box. So clearly, this is being hardwired into me, and that’s good. That’s probably better than being able to make lots of different things, from a what-if-I-get dementia perspective. But I thought I was going to have this whole fleet of little animals, and it turns out that that’s not me. I can become kinder, but I can’t become a person who likes making origami.

The same thing happened with the knitting. I never made it past being able to knit a blob. I’ve done better with drawing, though. I still draw, and it’s really enjoyable. Connecting to that part of me has been great. And I’ve found myself also taking a lot of pictures, because drawing has me thinking visually. Photography’s not a particularly useful what-if-I-get-Alzheimer’s hobby, but it’s a sign that I’m thinking visually.

When you have Alzheimer’s, what happens when you go to take a picture? Your brain just doesn’t take in what’s on the screen?

At the very end, if you handed my dad a camera, he would’ve held it upside-down or sideways. He just wouldn’t have known what to do with it. But if you gave him a pencil, he could sign his name. My dad was a college professor in a state system, so if you gave him paperwork, he would fill it out, right up until the end. If he saw something that was obviously some sort of bureaucratic form, he’d scribble nonsense on all the lines. So he still knew what to do with a pencil. A pencil was comfortable. But a camera was alien.

What about exercise?

I’ve kept up with weightlifting. Not as regularly as I should, but often enough—I feel like I’m maintaining muscle mass. I’m still a strong and muscular person. And I stopped doing regular yoga, but I miss it, and I’m going back. I was on a very committed schedule, and then my yoga teacher moved, and I was like, “Oh, I’ll use videos,“ but it turned out I wouldn’t. Now I do the sun salutation every other morning, and that’s sort of the extent of it.

In your talk, you seemed pretty positive that you were going to get Alzheimer’s. But what are the statistics, really?

I kind of tune that out, because there are so many unknowns in terms of how exactly my father developed Alzheimer’s. I’m going to have genetic testing done next time I’m in the US long enough to get it. They can determine whether you have the gene that makes you much more susceptible to developing the disease. Basically, if you have the mutation for early-onset Alzheimer’s – -which is what my father had — it’s almost inevitable that you’ll get the disease. Beyond that, testing can’t tell you much.

Alanna Shaikh enjoying drawing with her son. Photo: Alanna Shaikh

Would it give you an idea of when onset would be?

No, they can’t do that yet.

How old was your father when he started developing symptoms?

In his early 50s.

That’s sobering.

Yeah. I mean, we didn’t know really what the symptoms meant at the time, but in retrospect, you can very clearly see the Alzheimer’s developing.

What were some of the symptoms?

For him, it was disinhibition. He just started acting weird. We thought maybe he had bipolar disorder, as he had some manic episodes, and he started telling dirty jokes he never told before. He started talking about his childhood in Pakistan and India, which he never talked about because it was really traumatic. Those are also things that can happen if you’re having a midlife crisis, so we didn’t recognize it as dementia. It’s not your classic pattern.

It turns out that for people who are highly intelligent, it doesn’t necessarily manifest in the same way, because they’re really good at compensating. They have enough excess cognitive capacity to make up for dropping and losing things, for example. If they’re forgetting words or names, they have the ability to develop mnemonics — that sort of thing.

Have you been doing work with Alzheimer’s since the talk? Did people start approaching you?

They did, and that was one greatest things about doing the talk. I’d really never thought about it before as anything beyond my personal story. I thought, if you’re going to give a TED Talk, you have to tell your best story—and this was my best story, maybe it’d be useful to someone else. It turned out it was really useful to others. I get emailed probably once a week from someone telling me that they saw the talk, and it helped them. That’s just the best feeling, because if you watch the talk, you’ll see it was really, really hard for me to give. It’s good to know that something that was that difficult for me was worth it.

I’ve also met with the Alzheimer’s Association of California about talking to people for them. I’ve been part of a group that’s working to increase attention to neurological disorders. I’ve been contacted by other people who want me to get involved in outreach. I’ve been thinking a lot about how I can get involved in Alzheimer’s advocacy.

But I’ve also been thinking bigger. It was interesting coming at this as an international development person, because all of the people I know in the professional international development sphere saw the talk, came back, and said, “You realize that you’re basically talking about disaster risk reduction. In a lot of ways, you’re talking about the same resilience that you want to build in a community. You’re talking about what do you do if you live in a place that tends to be hit by tornadoes.” So I started thinking more broadly about how to think about a future that isn’t the future you choose. How can you build a life that you’re living right now that prepares you for both the best possible future and the worst possible future? It’s a really, really big topic, and it might be the one I think about for the rest of my life. It’s created this lens for me to look at the world, and to think about the work I do with global health, and how that all comes together into this idea of how to have a good life in the present that also prepares a good life in the future.

Where will you take this idea?

I’m actually in the beginning stages of writing a book, and it’s one of the big themes. When you read the comments on my talk, a lot of people say, “How can you let the future affect your life like that?” “She’s given up, she’s making a mistake.” It was really interesting to me, because people seem to have this idea that your life now would be inherently terrible if you thought about your future too much as you live your daily life. But it seems like the “you” in the future is really going to regret that choice. The future Alanna is going to come back and slap me upside the head if I pretend that she doesn’t exist right now. It seems to be a surprising idea that you can live a good life now that prepares you for a good future. People think of it as a trade-off.

It seems your talk helped you evolve the work already you do into something much bigger.

Yes, I wasn’t expecting that. When I did the talk, I had really never considered Alzheimer’s in the context of global health, even though dementia and its effects on society are part of the global health discussion. My area of specialty is a lot more about primary health care and building health systems. So they were totally separate things in my world. It was almost like people had to point it out to me.

The disconnect between personal and professional was so strong that when people asked me to do advocacy for Alzheimer’s, I’d say no at first. My thought, even as someone who’s at risk, was that I’d rather that money be spent on vaccination for children or something that seems like it would help more people. But as time went on, connecting to so many people about aging and dementia and the future of the health system, I finally realized that there are many things that can be done to help people with dementia that help everyone. It’s not an either/or trade-off. If you help caregivers, then you’re helping moms with young babies and people taking care of the elderly. If you teach health care providers to treat people with kindness, that benefits everyone. Taking health care and the future seriously benefits everyone. There are ways to think about dementia that are not dementia-exclusive. And I don’t think I would ever have had any of those thoughts if it hadn’t been for all the conversations I’ve had since the TED Talk.

I actually wrote the talk at TEDIndia in 2009, while watching one of the speakers. I started thinking, “If I were going to give a TED Talk, what would I say? What about me is interesting?” I realized I was actually doing this thing that’s fairly interesting. And so I wrote down the title, “How I’m Preparing to Get Alzheimer’s,” and then I wrote the entire TED Talk, sitting right there in the audience. I started crying as I wrote everything down.

And what happened with your father?

My dad died about two months after the talk. It’s hard, because people do always ask after my dad, and I have to tell them that. But he saw the talk, and I am glad. I don’t know how much he understood, but he knew it was me on a big stage talking to people — and he was proud of me, and that made him happy.