Mini-nursing Homes / Mini-Locked Facilities

The New York Times ran a front page article on Wednesday, May 5, 2010: More With Dementia Wander From Home. The article describes the challenges faced by families and law enforcement in finding people with dementia who have wandered off driven by whatever impulse.

According to the article 6 in 10 dementia victims will do this at least once. Many will be found. Some will die in accidents or of exposure. A while ago I quoted statistics from Maria Shriver’s e-mail to The Huffington Post (www.huffpost.com):
“…There are nearly 10 million Americans providing…care to people with Alzheimer's disease or other dementias…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 millions of mini-nursing homes. Some of these need to be mini-locked-facilities. How does a teenager keep Grandma from leaving the house?

In my practice I see over and over again how reluctant medical personnel and family members are to confront this reality…deal with the ramifications. Institutional locked facilities are too expensive for most families. What else is available? One possibility are wristbands from Project Lifesaver, a non-profit, that can be used for tracking by law enforcement with radio devices.

I would like to see a basic protocol. At the first sign of mental and/or cognitive deficits the person would get tested. If there is a dementia diagnosis the individual and their network (family, friends, professionals) would meet with a trained professional to learn about future potential problems and appropriate coping strategies.

Dementia is a social disease. No, it is not contagious, but everyone is impacted---and not just the immediate family.

What about all the follks diagnosed with one or another form of dementia who are still driving?

Peggy Flynn MA
The Caregiving Zone
www.thecaregivingzone.org
415-236-1691

Mini Nursing Homes

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.