Lately I've been thinking how difficult it is for dementia patients, caregivers and concerned laypersons to participate in dementia research or even individual treatment decisions. When Dad was alive, this left me frustrated and uncertain, and I'm sure it was worse for him.
Part of the problem is the nature of dementia, and how complex and confusing the research is. But there's another reason it's difficult to participate: they way most healthcare is "dispensed." It often seems to me that medical care is done "to you" instead of "for you." I don't blame doctors or researchers - it's really a system-wide problem. So I was interested to find the Patient-Consumer Parade, a blog carnival focused on the question "Why can't patients be treated with the same respect consumers elsewhere get every day?"
One of my posts is part of Patient-Consumer Parade #6 hosted at Six Until Me. The theme of Parade #6 is how patient-consumerism is woven into our daily lives. After reading through the posts by caregivers, diabetics, med students, migraine sufferers and others, I see that other people besides me are rethinking the patient's role in the healthcare universe.