Cotton Wool in my Head: A First Person Account of Alzheimer's - Paperback

by Jacques Boersma (Author)

It's often family members who write books about their experiences with Alzheimer's, mostly the children of Alzheimer's patients. They watch their parents suffer and then feel the urge to share their personal experiences with outsiders. It is true that outsiders often have no idea what happens behind the scenes. This book is different; the author himself suffers from mild cognitive impairment, a usual precursor to full blown dementia, caused by Alzheimer's disease. When the doctor told Jacques Boersma about the strong possibility that he would get the disease, pretty soon he asked himself the question: "How should I spend my time as long as my mind is still sharp?" When he told a former colleague about the results of a medical exam, the colleague said something which made a lasting impression: "you have struck gold here". It took a while for his words to sink in: "you should put your experiences on paper and share them." The book started as a series of columns in a regional daily newspaper. Given the positive and very personal feedback, Jacques Boersma decided to publish his stories and insights as a book. He promised himself that it would be a beautiful book, both in content and in form. That's why he approached a poet and an illustrator to participate. In addition to the columns, the book includes twelve beautiful poems by Berthe Zwama. These poems align surprisingly well with the feelings that the columns provoke. The illustrations were made by Joke Dijk-Boersma. The soft colors Joke chose for her special interpretation of the columns add an extra dimension to this beautiful book. The perceived gravity of dementia is partly dependent on the behavior of those around the patient. As long as dementia is a taboo, everyone suffers more than necessary. Transparency is essential and should be a two way street: Transparency from the patient to those around him or her and the other way around. A great deal needs to be done to increase quality of life, because there are still people who are ashamed of their disease and transparency is lacking. This book by Jacques Boersma makes a very clear case that you get "better" from transparency about your condition. The book starts out with a thorough description of the first stage of the disease that is easy to identify with, the feeling something is off, the diagnosis and the time immediately following the results. He compares the transparency he shows in the columns in the regional daily with "coming out of the closet". Jacques Boersma has appeared at many Alzheimer Caf meetings in the Netherlands to tell about his book or for an interview. The book has been praised by many visitors: "That's how transparent you should be, impressive, now I understand my mother better, it was an eye opener, I am afraid of the diagnosis, but the book has made it clear to me it is possible to have a good life, also after the diagnosis." What is excellent about the book is that it discreetly contributes greatly to knowledge and understanding of the disease dementia, it treats many aspects from the point of view of an actual experience expert. The book leaves a lasting impression and contributes greatly to the essential breaking of a taboo. The book is published by the "Cotton Wool in my Head" foundation; a private charitable foundation that supports the accumulation and sharing of personal experience of people with mild cognitive impairment and dementia. The foundation was started by the author to keep contributing to a better life for patients and better understanding for those helping and treating them. More information can be found on www.cottonwoolinmyhead.org.

Author Biography

Jacques S.K.Th. Boersma PhD is emeritus professor of Knowledge Management at the Faculty of Economics and Business of the University of Groningen, the Netherlands. He is still actively involved in research and teaching in this area. He has written a number of scholarly publications and (co)authored textbooks on the topics of decision support and knowledge management. This book, however, is a very open and subjective account of his personal experience with mild cognitive impairment that comes with the diagnosis of Alzheimer's. He writes about his issues and anxieties, the events and expectations in his daily life. Jacques shares the knowledge that is closest to him as a person, and teaches us a great deal about the impact of Alzheimer's from a first person perspective. The combination of background and experience makes professor Boersma a highly valued member of the program committee for the dementia Research and Innovation program "Memorabel", which is part of the Dutch "Deltaplan for Dementia". This multimillion euro program is sponsored by the Netherlands Organization for Scientific Research and the Ministry of Health, Welfare and Sports in the Netherlands, coordinated by ZonMw.