This is an appeal from the perspective of someone with Lewy Body Dementia and a daughter and former carer to my late mother, who had Alzheimer’s disease. I would like to address something that is of utmost importance to me: the need for occupational therapists to be properly qualified and to have an understanding of dementia. I would also like to note the importance of the recipients of Occupational Therapy to be involved in its planning. There are days when I feel so overwhelmed by dementia that I feel like I'm losing control of my life. But I know I am more than my illness. I am still here – with my thoughts, my feelings and my desires. And that is why it is so important that we, as people living with dementia, are actively involved in the treatment process, rather than just being passive recipients.
I remember the time when my mother had Alzheimer's. Her Occupational Therapy was often helpful, but unfortunately, it wasn’t always tailored to her actual needs. There were moments when I wished the therapists had involved both of us more in the process: me, as her caregiver and her, as the recipient. We, as caregiving family members and as those affected, need to be heard so that our real needs and wishes can be incorporated into the therapy. For better Occupational Therapy to be possible, we need occupational therapists who not only have a general knowledge and understanding of the area, but who are also specifically trained to understand the unique needs of people with dementia.
Occupational Therapy must not only be based on expertise but also on empathy, compassion, and a true understanding of us as individuals affected by dementia. It’s not just about the “what,” but about the “how.” How can we, as affected individuals, be actively involved in the therapy process? How can we ensure that our perspectives are considered in the therapy? There is still no legal regulation in Germany requiring occupational therapists to hold specific qualifications to work with people with dementia. Although there are recommendations from professional organisations, without a legal obligation, these remain suggestions rather than binding requirements. This needs to change. I call for mandatory continuing education for all occupational therapists working with people like me to ensure that we receive the support we truly need.
My appeal to professionals and decision-makers
Let’s create Occupational Therapy that is not only based on expertise but also on empathy and compassion. Occupational Therapy that includes us, people with dementia, as active participants in our own treatment. Give us the opportunity to co-create, so that we can live a life of dignity and self-determination.
