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.
Showing posts with label Alzheimers disease. Show all posts
Showing posts with label Alzheimers disease. Show all posts
Wednesday, May 20, 2009
Friday, May 15, 2009
Maria Shriver describes Alzheimer’s disease: A Baby Boomer Epidemic
Maria Shriver, First Lady of California, wrote in a blog on www.huffingpost.com:
“I wrote a book called, What's Happening to Grandpa? At the time, I said I wrote it to help my children understand what was happening. In truth, I wrote it to explain Alzheimer's to myself. But when I wanted to turn it into a television special -- to shine some light on this subject -- no one was interested. I was told Alzheimer's wasn't big enough -- it was just "an old person's disease."
It is time for this attention. Because someone is diagnosed in this country with Alzheimer's every 70 seconds. And fully one third of Americans have a direct experience with this disease. The epidemic is growing.”
What a contrast with the 24-hour news cycle about the current flu which to date has affected a few thousand and caused (thankfully) relatively few deaths. It is also worth noting that an individual sufferer deals with flu for a matter of weeks. Decline and death from Alzheimer’s is often measured in years if not decades.
How do we make the invisible visible?
The HBO special on Alzheimer’s is a great start. Taking a cue from the current flu crisis I went to www.pandemicflu.gov. The website has a wonderful map. Visitors to the site can click on each state to see the number of flu cases reported including any deaths.
What about a site www.alzheimers.gov? Where we could click on each city to learn how many individuals with Alzheimer’s disease reside there? Of course it would be great to have this kind of visual presentation available for every disease.
As of now, most media attention about illnesses related to the aging process come from the pharmaceutical industry, i.e. advertising their drugs to treat Alzheimer’s, selling power chairs, or the like. Naturally their messages are geared toward the products they are selling. These commercials usually suggest that the viewer speak with his/her doctor about this or that condition.
Is the doctor’s office the only place for discussions? Are these subjects that only affect the individual?
No and No.
“I wrote a book called, What's Happening to Grandpa? At the time, I said I wrote it to help my children understand what was happening. In truth, I wrote it to explain Alzheimer's to myself. But when I wanted to turn it into a television special -- to shine some light on this subject -- no one was interested. I was told Alzheimer's wasn't big enough -- it was just "an old person's disease."
It is time for this attention. Because someone is diagnosed in this country with Alzheimer's every 70 seconds. And fully one third of Americans have a direct experience with this disease. The epidemic is growing.”
What a contrast with the 24-hour news cycle about the current flu which to date has affected a few thousand and caused (thankfully) relatively few deaths. It is also worth noting that an individual sufferer deals with flu for a matter of weeks. Decline and death from Alzheimer’s is often measured in years if not decades.
How do we make the invisible visible?
The HBO special on Alzheimer’s is a great start. Taking a cue from the current flu crisis I went to www.pandemicflu.gov. The website has a wonderful map. Visitors to the site can click on each state to see the number of flu cases reported including any deaths.
What about a site www.alzheimers.gov? Where we could click on each city to learn how many individuals with Alzheimer’s disease reside there? Of course it would be great to have this kind of visual presentation available for every disease.
As of now, most media attention about illnesses related to the aging process come from the pharmaceutical industry, i.e. advertising their drugs to treat Alzheimer’s, selling power chairs, or the like. Naturally their messages are geared toward the products they are selling. These commercials usually suggest that the viewer speak with his/her doctor about this or that condition.
Is the doctor’s office the only place for discussions? Are these subjects that only affect the individual?
No and No.
Wednesday, May 13, 2009
Alzheimer’s Disease---A Different Kind of Pandemic
Yesterday I watched "The Alzheimer's Project," a four-part HBO documentary which looks at the faces behind the disease and the hope for a cure. Anyone can watch these programs for free online at the website for the National Alzheimer’s Association.
The NAA has also published a new report, 2009 Alzheimer’s Disease Facts and Figures. The report is a comprehensive statistical abstract of U.S. data on Alzheimer’s disease that includes: prevalence, mortality, the costs of Alzheimer care, caregiving and a special report on Mild Cognitive Impairment and early-stage Alzheimer's.
The numbers are mind-boggling:
• As many as 5.3 million people in the United States are living with Alzheimer’s.
• Alzheimer's and dementia triple healthcare costs for Americans age 65 and older.
• Every 70 seconds, someone develops Alzheimer’s.
• Alzheimer's is the seventh-leading cause of death.
• The direct and indirect costs of Alzheimer's and other dementias to Medicare, Medicaid and businesses amount to more than $148 billion each year.
The National Pandemic Influenza Preparedness and Response Plan mandates that state plans identify “public and private sector partners needed for effective planning and response.” Also the plan insists on “coordination with local authorities, such as county and city public health departments, to assist in developing local plans on which the state plan depends.” Every state had to submit their plans to the CDC by April 2007 for evaluation.
What if we had this kind of plan for a community response to Alzheimer’s disease? To cancer? To all of the illnesses and disabilities that already afflict individuals and communities---contagious or not?
How would the national health care debate be different if we were asking each elected official---how many people in your district have Alzheimer’s? Are disabled? Need special equipment? Are dealing with cancer or HIV? Are 80+? 90+? Are the public and private sector partners in your district ready to meet these needs? Today? Tomorrow?
I think there is a huge disconnect between national discussions about health care and the current and projected local requirements.
All illness is local. All aging is local. All politics is local.
The NAA has also published a new report, 2009 Alzheimer’s Disease Facts and Figures. The report is a comprehensive statistical abstract of U.S. data on Alzheimer’s disease that includes: prevalence, mortality, the costs of Alzheimer care, caregiving and a special report on Mild Cognitive Impairment and early-stage Alzheimer's.
The numbers are mind-boggling:
• As many as 5.3 million people in the United States are living with Alzheimer’s.
• Alzheimer's and dementia triple healthcare costs for Americans age 65 and older.
• Every 70 seconds, someone develops Alzheimer’s.
• Alzheimer's is the seventh-leading cause of death.
• The direct and indirect costs of Alzheimer's and other dementias to Medicare, Medicaid and businesses amount to more than $148 billion each year.
The National Pandemic Influenza Preparedness and Response Plan mandates that state plans identify “public and private sector partners needed for effective planning and response.” Also the plan insists on “coordination with local authorities, such as county and city public health departments, to assist in developing local plans on which the state plan depends.” Every state had to submit their plans to the CDC by April 2007 for evaluation.
What if we had this kind of plan for a community response to Alzheimer’s disease? To cancer? To all of the illnesses and disabilities that already afflict individuals and communities---contagious or not?
How would the national health care debate be different if we were asking each elected official---how many people in your district have Alzheimer’s? Are disabled? Need special equipment? Are dealing with cancer or HIV? Are 80+? 90+? Are the public and private sector partners in your district ready to meet these needs? Today? Tomorrow?
I think there is a huge disconnect between national discussions about health care and the current and projected local requirements.
All illness is local. All aging is local. All politics is local.
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