Happy Friday, everyone! I am working really hard to not feel like summer is winding to a close, even though I’m finished with my summer course. I can’t complain because I don’t start classes until after Labor Day, but I definitely want to soak up the sunshine while I can. I spent today trying to fix my website, but at least I did it while sitting outside.
You may have seen an Instagram story of mine a while back about chronic/degenerative illness and blaming sufferers, and I wanted to expand on it a little bit. We also celebrated my grandma’s 90th (!) birthday last week, so she’s been on my mind a lot- well, she’s always on my mind a lot, but even more than usual.
Five million people in the US currently suffer from Alzheimer’s Disease (which I am focusing on today) alone, including 11% of those 65 or older, and that number is projected to grow to 14 million by 2050. So I think this topic is really, really important. However, if you working on ditching restrictive eating/dieting and incorporating intuitive eating and/or are in recovery from disordered eating or an eating disorder, this post is not recommended for you until you are further along in the process. I talk about the role of nutrition and exercise in preventing Alzheimer’s, but I think you need to be free of the diet mentality before worrying about that kind of stuff.
This is personal. Two of my grandparents have dementia. One of them has late-stage Alzheimer’s Disease. It’s hard, and it’s sad. The burden falls on my mom much more than on me, and psychologically, it’s much harder for her (they are her parents, after all), but it is still really difficult when your grandmother (your loving, fun, fearless grandmother, who you have known your whole life, who was always around when you were a kid) doesn’t know who you are. We are lucky enough to have the resources to pay for care, and we are also lucky to live in a country with Medicare.
There is a lot of stigma around Alzheimer’s. My family didn’t tell anyone when they first got the diagnosis, because they knew people would treat her differently. I could easily write a blog post just about the disease, but this is a nutrition blog. So instead, I’m going to tell you what my least favorite things to hear about my grandmother’s illness are:
- “Well, she used to smoke.” (About a woman who quit over twenty-eight years ago, by the way.)
- “She didn’t take care of herself.”
- “She didn’t eat right.”
- “She should have been exercising all those years.”
- Or the real kicker: “You guys should get her to exercise now.” (Could she use some more physical activity? Absolutely. But she doesn’t remember how to walk, so teaching her how to exercise is going to be difficult. Please spend 10 minutes with her before giving your unsolicited advice.)
More than anything, it’s the tone of voice used. Like she deserved it. Like it’s her fault. Like saying this contributes anything useful to our current situation.
Here’s the deal. We don’t really understand Alzheimer’s that well. Lifestyle likely does contribute, as do various risk-factor genes, but prevention studies are not definitive. I’m not a medical professional or a neuroscientist, but I’m going to lead you through what the field is saying about the illness, its causes, and how to prevent it.
What is Alzheimer’s Disease?
Alzheimer’s Disease is a type of dementia where two types of proteins accumulate in the brain: tangles (tau) and plaque (amyloid-beta). This leads to a sort of “accelerated aging,” as those proteins will impede neurotransmitters and eventually lead to the death of brain cells. If you are unfamiliar with the symptoms and the course of Alzheimer’s and want to learn more, the Alzheimer’s Association has a lot of useful information.
What causes Alzheimer’s?
The million-dollar question, with no simple answer. According to the Alzheimer’s Association, the disease “probably develops as a result of complex interactions among multiple factors, including age, genetics, environment, lifestyle and coexisting medical conditions.”
More specifically, Dr. Gad Marshall of the Center for Alzheimer Research and Treatment noted that:
For 1% of all cases, there are three genes that determine definitively whether or not you will have Alzheimer’s, and all three relate to amyloid-beta production, which in these cases is likely the cause of Alzheimer’s…For the other 99%, amyloid and tau are closely associated with Alzheimer’s, but many things may contribute to the development of symptoms, such as inflammation in the brain, vascular risk factors, and lifestyle.
(To explain vascular risk factors: things like high blood pressure, diabetes, and high cholesterol are correlated with increased risk for Alzheimer’s. But of course, that’s complicated, because these conditions result from a mix of genetic, environmental, and lifestyle factors. And you can’t just say these conditions cause Alzheimer’s just because they are correlated with Alzheimer’s.)
So yes. Lifestyle probably does matter, and that’s something we can control. What does prevention through lifestyle mean? According to the Alzheimer’s Association, it means…
- Keep your brain active through formal education, strategic games, art, construction projects, etc.
- Physical activity
- Getting enough sleep
- Not smoking
- A healthy diet, “although research on diet and cognitive function is limited.”
- Two ways of eating that are recommended are the Mediterranean Diet and the Mediterranean-DASH diet. You know I don’t recommend diets. While these are not diets in the traditional sense, I wouldn’t recommend forcing yourself to stick to these either. The research says they are good for heart health. That’s unsurprising, because they both include a wide variety of whole grains, fruits, vegetables, and monounsaturated fats like nuts, seeds, and olive oil, among other foods. You don’t need to stop eating brownies and ice cream to add things through your diet. The last principle of intuitive eating is “Honor your health with gentle nutrition.” Here are some resources on gentle nutrition, if you’re interested, but most intuitive eating counselors recommend working through the nine other principles before incorporating gentle nutrition. (The last link is to a podcast series rather than a specific blog post- episode 11, “Honor Your Health With Gentle Nutrition” addresses just that.)
- This message is pretty muddled anyway, actually. The Alzheimer’s Association recommends a diet low in fat, yet also recommends the Mediterranean Diet, which is not low in fat at all!
- Reduce the risk of brain injury (through wearing a seatbelt and helmet, taking steps to prevent falls, etc.)
- Take care of your mental health
You may have noticed that good nutrition, exercise, and not smoking are listed here! Yes, they likely have an effect, although the Alzheimer’s Association notes that the research we have is limited because:
Much of our current evidence comes from large epidemiological studies such as the Honolulu-Asia Aging Study, the Nurses’ Health Study, the Adult Changes in Thought Study and the Kungsholmen Project. These studies explore pre-existing behaviors and use statistical methods to relate those behaviors to health outcomes. This type of study can show an “association” between a factor and an outcome but cannot “prove” cause and effect. This is why we describe evidence based on these studies with such language as “suggests,” “may show,” “might protect,” and “is associated with.”
That is to say: you could do everything “right,” and still get Alzheimer’s. There is quite a bit of disagreement over what good nutrition means, with some suggesting more extreme diets like the ketogenic diet (which I do not recommend for many reasons, but to begin with the physiological ones, click here.)
Anyway, the point I was trying to make is this: you hear a lot more about food, exercise and smoking than you do about getting enough quality sleep, socialization, utilizing your brain through learning or other activities, and taking care of your mental health. You also hear about food, exercise and smoking in a much less compassionate way. (No, I don’t think you should smoke. If you do smoke, I think you should take steps so non-smokers don’t inhale the smoke. But I also think that compassion for others is paramount- smoking is an addiction and quitting is hard.)
Depression and isolation are correlated with Alzheimer’s just as poor nutrition is. Why are we obsessed with eating right and exercising enough for health, but not interested in talking about the others? Moreover, why is our obsession with nutrition and exercise about individual behaviors, and not about making sure everybody has access to affordable, nutritious food?
How to actually support sufferers and caregivers.
The other piece of this is that victim-blaming and constructive discussions about prevention are two different things. The fact that my grandmother smoked three decades ago is not a useful thing to bring up. There is nothing that statement can do except make caregivers (or sufferers, if they are with it enough to understand) feel guilty. You can take steps to prevent neurodegenerative disease in yourself and your loved ones without blaming those who currently have it.
- Instead of pointing out that a sufferer smoked, you could take steps to quit smoking yourself and encourage loved ones to seek help to do the same. You could also talk to your kids about how to resist peer pressure.
- Instead of saying that she didn’t eat right, you could offer to help seniors and caregivers with food preparation (and perhaps include more nutritious foods in that preparation) and/or provide helpful suggestions for meal ideas. Caregivers frequently have jobs and children. An example of a useful suggestion my mom recently received was for my grandma to drink smoothies from milk, fruit, and protein powder. You can also include more veggies, fruits, legumes, whole grains, healthy fats, etc. in your own diet and your family’s (in a non-restrictive way).
- Instead of accusing sufferers of not exercising while younger, you could accompany seniors on walks or participate in another physical activity with them (like chair yoga, tai chi, light weight lifting, hiking, dance) if they are still able. You can also include movement in your own life.
- Engage seniors in stimulating conversation. Play strategy games with them, like mah jong. Point out opportunities for discounted college courses for seniors and help them register (these can be extremely discounted- at my local City University of New York college, seniors can audit courses for $80 a term. Some more information on finding discounted courses can be found here.) Find book clubs, art classes, and other activities for them and go with them if possible- check the local library.
- Visit the seniors in your life.
- Avoid statements that focus on what was done wrong (in your opinion) in the past and can’t be changed now. This isn’t constructive for anyone and facilitates an atmosphere of blame- which is the last thing a family dealing with Alzheimer’s needs.
Many of these could even be done on a volunteer basis. For example, DOROT in NYC has a Friendly Visiting program where you go to seniors’ homes and spend time with them. There may be one in your community. Or, check with a local senior organization or center to see what you can do.
Above all, be a source of support for sufferers, caregivers, and other loved ones. Dementia is awful. It’s awful for everyone involved. I can’t imagine how it feels to be a primary caregiver. I certainly can’t imagine what is going on in my grandparents’ heads. Ask caregivers what you can do to help them out, or just be a source of moral support.
Chronic/degenerative illness and victim-blaming
I’ve heard victim-blaming statements about a wide variety of conditions, including diabetes, cancer, and heart disease. Even if they are well-meaning, they contribute to an atmosphere of fear, blame, and guilt. Is there a correlation between diet/exercise and Type 2 diabetes? Yes. But there is a big difference in encouraging healthy behaviors (beyond diet and exercise, by the way- sleep, mental health, etc. all matter) and blaming victims. A lot of factors are out of our control, like genetics and socioeconomics (which cannot be overstated). And frankly? Often it is none of your business. Strangers’ lives are usually none of your business (and also, you may be assuming things about their lifestyle based on their weight).
We live in a world of endless, often conflicting, information. These conditions are scary, and they are omnipresent. For some people, attempting to eat/exercise perfectly can be a response to anxiety about these conditions, or about degeneration/death in general. Chastising others for their diets (god forbid someone eats grains) and monitoring your own can reassure you that this won’t happen to you. But of course, it can. Your perfect diet is not going to save you from aging.
Prevention matters. But we can’t live in a bubble. We can’t prioritize diet and exercise over mental health. We can’t breed an atmosphere of fear- that is not the solution to what is a public health crisis. Compassion may not be a solution either, but providing it is simply the right thing to do.
If you have any questions, as always, feel free to comment or reach out. Have a great weekend, everyone- I hope you enjoy your weekend eats as much as Grandma Frances enjoyed this lobster!
As always, I am not a dietitian, therapist, neuroscientist, or medical professional. If you want specific information about Alzheimer’s Disease, degenerative disease, dementia, or anything else, please consult a medical professional.