The National Council of Dementia Minds released its report at the Michigan State University College of Medicine in Grand Rapids. It was created by 65 people living with dementia who shared their experiences and made recommendations Executive Director Brenda Roberts says they are co-researchers, not just study subjects.
“It’s about supports and services people living with dementia need and want from the day of diagnosis to one year thereafter.”
Patients’ stories shared some disturbing themes. First, a lack of compassion, information, and resources from the medical community. Many were simply dismissed with a prescription and told to come back in a year.
“One of the participants, who is a doctor, called me and said I have PTSD because of how I got my dementia diagnosis. This is really hard.”
Another major theme was the need to change the perception in society of what dementia is, in its many forms.
“How we have conjured it up in media and society, that end-stage: in a wheelchair with a stained shirt, staring off into nowhere.”
Roberts emphasizes many people live very well with dementia for quite a long time.
“They hear frequently - the participants - ‘you don’t look like you have dementia.’ They don’t look like they have dementia because all we think about is the end stage!”
Overall, the report includes 131 recommendations such as better training for doctors, more resources and education, and increased peer support..
“Technology has enabled them to connect and create a voice. They’re creating a movement and its never going to be the same again.”
