Smell, disgust and Alzheimer’s

An MRI of my brain in 2018 showing the location of the insula and temporal lobe.

As I describe in Tattoo, my first symptom of Alzheimer’s occurred over fifteen years ago when I first noticed a decrease in my ability to smell and then began to have episodes of illusory odors called phantosmias.  The neuropathological changes of Alzheimer’s disease appear first in the locus coeruleus of the brainstem and then in olfactory parts of the brain including the olfactory bulb, anterior olfactory nucleus, and entorhinal cortex. I totally lost my ability to smell over the next few years.  Almost all people with Alzheimer’s have at least some impairment of olfaction, but most are not aware of it unless tested, probably because it comes on so gradually. 

I am often asked what it’s like to not be able to smell. Of course there are downsides. Food all tastes pretty much the same, not bad, but not very interesting. I really miss the smell of bacon frying in the pan. I wouldn’t be able to smell a gas leak, so there are safety issues. But there are a few advantages. I don’t waste money on expensive wine. I can’t smell a skunk. And I’m not grossed out by messy dog poop cleanup or changing a diaper. By the time my sense of smell was completely gone, I started to be aware of something else. I don’t get disgusted anymore. At first, I thought this was just because I could no longer smell disgusting things, but it seems to be more complicated than that.  I find that I have become a more tolerant person.  I will engage a homeless person in conversation, something I’m ashamed to admit I would not have done in the past. I don’t necessarily think I am more empathetic. People with Alzheimer’s usually have trouble with empathy. I think it is just that the protective barrier of disgust is no longer working, and maybe that results in something resembling empathy.

The insula is the part of our brain that registers disgust. It is located deep in the brain at the bottom of the lateral sulcus. It lights up on a functional MRI scan when a research subject sniffs a foul odor.  It even lights up when a subject watches the facial expression of someone else smelling a foul odor. Although amyloid plaques and neurofibrillary tangles eventually appear in the insula, it is usually not affected until later in the disease.

Modified from Christopher H. Hawkes and Richard L. Doty, Smell and Taste Disorders, 2018, Cambridge University Press, pg. 20 (colors added).

Don’t worry, there will not be a quiz.  I show this schematic just to illustrate how complex the pathways are connecting the olfactory sensory receptors in the nose (yellow) to the insula (red). As shown in the MRI image at the top of this post, my insula still looked pretty good four years ago.  There was no atrophy unlike in the adjacent temporal lobe.  My inability to register disgust probably lies elsewhere in this labyrinth of neuronal pathways, but that’s OK with me. I am actually quite happy to have a life without disgust.

4 Responses

  1. Leslie says:

    Very interesting and thank you. One part of your book you mentioned that although you couldn’t smell your wife’s cooking, you knew she was cooking something that smelled good by the way your dog wagged his tail. I appreciate looking at what is gained as well as lost.

    • Dan says:

      I agree with you Leslie. It may seem Pollyannaish, but I believe it is better to celebrate our gains than mourn our losses.

  2. Betsy L says:

    I lost my sense of smell about 7 years ago, and my PCP treated it as a curiosity. I recently started donezepil and, at 20mg QD, have regained about 50%; however, I have frequent phantosmias (the scent of cheap floor wax and petrochemicals). I always thought of it as an olfactory hallucination. Bit the day after going from 5 to 10mg donezepil, I smelled my perfume for the first time in years; I enjoyed chicken roasting; I could smell my shampoo and body wash ; I even cringed when I detected my own poop; yesterday I knew it had rained from the air in the room. Marvelous! But I can still clean a cat box without gagging; I can’t smell garbage; I don’t notice things burning
    Waremelon, strawberries and blueberries smell like floor wax. I’m about to add memantine to my medications, and I hope it further improves my ability to smell

    • Dan says:

      Thanks for your comment Betsy. There is almost nothing in the neurological literature about an association of phantosmias with Alzheimer’s disease. I think it is under reported. At least 5 people with Alzheimer’s or at risk for Alzheimer’s have contacted me about their phantosmias. Of course it is well known that most people with Alzheimer’s have at least some loss of the ability to smell, but most are not aware of it until tested. It is fascinating that your sense of smell improved after starting donepezil. That didn’t happen with me. I would be interested to know if others have experienced olfactory improvement after starting donepezil or similar drugs.