I recently started work on a project which is looking at gender and dementia, both of which are topics that I am passionate about. Dementia affects women and men differently, both in terms of symptoms and care. The new ParGenDA research project is investigating these differences and developing gender-specific approaches to improve support for people with dementia and their families. A steering group of ten people including myself as a person with dementia (Lewy Body dementia) and caregiving relatives (mother with Alzheimer's and brother with a brain tumour) will accompany the entire process together with the project team. This will ensure that real perspectives are at the heart of the research. I am a woman, a mother and a daughter.
My life has been profoundly shaped by gendered experiences, many of them negative and some of them deeply traumatic. Some of these experiences led to health problems, such as struggles with anorexia in my youth, an attempt to regain control in a world that I felt had claimed, judged, and harmed my body. Despite facing many difficulties in my life and my relationships, I refused to be diminished. I was a single mother, without a university degree, but I worked my way up to become the CEO of a company. I faced constant battles against stereotypes, arrogance, and power games but, nonethless, I carved out my place. In 2017, I received a diagnosis of Lewy Body dementia. Another blow and another label. My experiences with the healthcare system have often been that, as a woman, I was dismissed and not taken seriously. Doctors spoke to me with arrogance and condescension, as if I were not a person but merely a case study. In both my professional and personal life, I have faced hardships that I feel were overwhelmingly related to my gender, with people seeming to view my gender as an open invitation to cross my boundaries.
All the gender issues we are now researching are not abstract theories to me, but are lived reality: care, illness, participation, power, protection, vulnerability and the relentless search for dignity and recognition. For all those who have had similar experiences and are in a similar position, I call for more gender-sensitivity in dementia care. Gender-sensitive perspectives should not be an “add-on,” but rather should be central, not just to dementia care, but also to research, medicine, and in wider society. I hope that the project I am working on, and all the other work being done in this area, will lead to real change. Because behind every gender issue, there is a life. My life.