How can you alleviate the suffering of an Alzheimer patient?

When Alzheimer’s struck, my beloved wife was extremely stressed by the loss of control over her own life. In the early years, I could divert her attention by traveling with her in our campervan our second home. After some time, however, pills became indispensable – four oxazepam tablets per day to sedate her, just so that she could function to some extent. Yet she was not herself anymore, perhaps more because of the oxazepam than the disease. And she suffered from it desperately.

I asked our family doctor, the gerontologist and neurologist always the same question: “How can you alleviate the suffering of an Alzheimer patient?” The first two answered, “You mean euthanasia, but that is impossible.” The neurologist said, “You know that better than we do; we only study brains not patients”.

Then I noticed whenever Glory (a refugee from Nigeria who was one of our caregivers) danced the salsa with her, or Esma (another caregiver and second generation Moroccan) hugged her, she became much happier and carefree. If she was restless during the night, I didn’t give her pills either but held her in my arms instead and she was fine.

When I was at Leiden University I had learned about the stress hormone cortisol and the social hormone oxytocin. The latter hormone plays an important role in connecting social contacts with senses of pleasure. A high oxytocin content is associated with feelings of trust and companionship. I guessed that Alzheimer patients are short of this social hormone because of their isolation.

I took this idea to my colleague, a professor-emeritus psychofarmaca at Leiden University and past chairman of Alzheimer-Netherlands. I asked his opinion and if he knew a way to deliver oxytocin to the patient. He told about a past experiment in which he had injected oxytocin but the problem was that it was immediately broken down in the liver. So you have to stimulate the brain itself. But how?

Meanwhile, I had Googled ‘oxytocin stimulus’ and found a food supplement that supposedly stimulates the production of oxytocin in the brain. I showed it to him and he said, “Try it. You are a pioneer”. The following day he sent me an article from the United States that he had found positive effects of oxytocin on the behaviour of Alzheimer patients, http://www.ncbi.nlm.nih.gov/pubmed/21859765.

I started with one capsule of the food supplement in her morning porridge, without telling our caregivers. I saw the effects almost immediately. Within two weeks, all our caregivers independently said how she had changed – that she was much friendlier, more pleasant, more herself. Then we started to reduce the quantity of oxazepam. Within another two week, we found she did not need this sedative at all. Oxytocin alone was enough. If you came to her she opened her arms and radiated gratitude.

You can search for ‘oxytocin’ on the website of Alzheimer-Netherlands , but it comes up as ‘no results’. The same is true for www.alz.org. Of course our experience was with only one patient and may well be due to many different factors, such as we no longer had upheavals from traveling or outdoor visits. Other factors that could have influenced the outcome included a strict day and night rhythm, changes in her brain due to the progression of the disease, or her acceptance of her situation. Yet, although her condition became worse and worse, when she received oxytocin stimulus she seemed to suffer less than before. She also seemed more herself, until her suffering was put to an end by pneumonia, ‘the old man’s friend’.

Frans W. Saris

BeyondRCT-2

Amsterdam, 25 IX 18