Another set of statistics in Maria Shriver’s e-mail to The Huffington Post (www.huffpost.com) provided backup to one of my major themes---more and more homes are becoming mini-nursing homes. She tells us:
“Seventy percent of people with Alzheimer's live at home, cared for by family and friends. There are nearly 10 million Americans providing 8.4 billion hours of unpaid care to people with Alzheimer's disease or other dementias - valued at $89 billion. And believe it or not, there are getting to be almost as many kids actually "babysitting" a grandparent with Alzheimer's at home as kids babysitting children. That's where we are.”
Let’s see, that’s somewhere in the neighborhood of how many million mini-nursing homes? Maybe we could call these nursing homelets.
These nursing homelets are unsupervised, unregulated. Families and friends are often dealing with complex challenges. Completing simple activities of daily living (toileting, bathing, dressing, eating) can become ordeals. Behavior problems like uncontrolled anger and anxiety, rummaging, and wandering can be major challenges even to someone who is trained in this work.
What about the person who isn’t trained? Who might not be there by choice? Is it any wonder that tempers flare? That it becomes easier to forgo the bath or the meal or the medication?
What can we do? One idea is that health care organizations providing medical care to someone with a neuro-degenerative disease also provide oversight of these mini-nursing homes and ongoing training and support for those caregivers. There could be an initial home visit at the time of diagnosis with additional elective visits either at the request of the caregiver and/or the client or mandatory visits if medical professionals perceive problems with care, i.e. weight loss, poor hygiene, bruising, etc.
Another is to set up an on-demand cable channel showing programs that deal with just these issues. Programs already exist at many health care institutions: how to lift a person; strategies for bathing a resisting adult; short courses on specific diseases and treatments---but you have to go there for access. Caregivers often have little free time. I can tell you from experience that when I get time away from a client I am not going to a library to read up on their situation. I want to get as far away from the reality as possible. But at 9 in the morning, faced with a dementia sufferer who doesn’t want to eat or take a bath---it would be so helpful to be able to see a program that shows strategies for accomplishing these activities.