My passion for Dementia research

In high school I was already intrigued by movement as a mode of expressing yourself emotionally and social interaction. What was highly valued during the physical education lessons – ‘showing who you are, expressing your talents and collaborating with peers’ – was not really appreciated during the other lessons like German, Latin or mathematics. This is probably when the seed was planted for my growing sense of justice at university, that everyone has the right to be recognized and respected as a person and to express themselves.

After my school experiences studying Human Movement Sciences was a logical step for me. During my doctoral internship I became involved with people with dementia in a nursing home. I was astonished by the differences in their behaviour on the ward and during the psychomotor therapy sessions. This got me thinking about the extent to which behavioural changes in dementia were caused by the brain degeneration, or the understimulating institutional environment. At the time, in the late 1970s, clinical psychiatry paid much attention to hospitalization phenomena, such as apathy, unsocial behaviour and learned helplessness, caused by the institutional environment. I felt it was worth investigating whether part of the behaviour and mood changes in dementia that were attributed to the degeneration of the brain were in fact symptoms of not being activated as a person and thus losing one’s self.

My PhD research showed that psychomotor therapy had a positive effect on aggression, life satisfaction, nighttime restlessness and increased social interaction. This was the reason for me to continue my research and to show that people with dementia need support in maintaining an emotional balance and social relationships, and that it is unjust to neglect their adaptation process. It was in the late 1980s that I developed the Adaptation-Coping model to explain how, apart from brain disease-related factors, personal, social and material factors, including the adaptation and coping style, also determine the person with dementia’s behaviour. This model became the basis for a psychosocial care strategy in dementia that started with a psychosocial diagnosis to understand the specific areas of life people needed support in, and aimed at improving their mental and social adaptation and quality of life.

Now, 30 years and many successful intervention studies later – from emotion-oriented care in nursing homes to the internationally implemented combined community-based Meeting Centres Support Programme within JPND-MEETINGDEM – it is clear we were on the right track, and still are. It’s quite amazing though to realize how experienced injustice can motivate you for so many years to put all your energy into a cause you wholeheartedly believe in, i.e. show the world that there are very good reasons to improve the care and support for our fellow citizens living with dementia and their families.

Rose-Marie Dröes, Dept of Psychiatry, Amsterdam UMC, location VUmc

Leader INTERDEM Taskforce Social Health in Dementia