I’m finding it very disheartening that I can find more care
and support for dementia caregivers than I can for actual dementia patients.
Don’t get me wrong, our caregivers deserve all the care and support and love
they need and more. But the more I search for support and help for my own
dementia the more I come up empty. I can finds mountains of general information
that I could fill up books with repetitive information.
I also have Parkinson’s and with all the money and research
that has been and is being poured into finding better treatments and cures new wealth
of knowledge comes out almost weekly. I even receive frequent newsletters with
new promising drugs or breakthroughs in science leading us towards a biomarker
or cure.
So why is research and funding lacking so behind while our
caregivers get more attention? It seems if we could get better treatment and
find cures we would need caregivers less. Don’t get me wrong I’m not harping on
caregivers. We need them. I just don’t understand the lack of resources for
dementia. Is it because dementia is a byproduct of another illness? Cure the
illness and then the dementia will be retarded (slowed to a halt but not
reversed)?
There is some research going on in the United States. In
2012, the President announced the National Plan to Address Alzheimer’s Disease,
a national effort to expand research in Alzheimer’s and related dementias
prevention and treatment and to move the most promising drugs from discovery
into clinical drugs. However to date there are still only four drugs approved
to treat dementia which only help to improve memory symptoms. They don’t slow
down the progress or cure the disease. The plan aims to prevent and affectively
treat Alzheimer’s and other dementias by 2025.
It’s foundation is the 2011 National Alzheimer’s Project Act
(NAPA), which was developed to create and maintain a national strategy to
overcome the disease. The National Plan calls for increase federal funding for
AD research, support for those affected by AD and their families, increased
public awareness about AD, and improved data collection and analysis to better
understand the impact of AD on people with the disease, families, and the
health and long-term care systems.
The National Institute of Neurological Disorders and Stroke
(NINDS), a component of NIH, is the leading federal funder of research on
nervous system disorder. Another NIH Institute, the National Institute of Agin
(NIA), is the leading federal funder of research on AD. Together, these
Institutes are world leaders in supporting research on the dementias, including
Lewy body dementia, frontotemporal disorders and vascular dementia.
For all the research I could find in the United States this
is what I could find. The majority of dementia research is found in Europe and
Australia. I can tell you the ins and outs of my Parkinson’s and my bipolar. I’ve
spent years researching them and living them. I had the mind to absorb the book
knowledge that I get my hands on. I’ve had the abilities to assimilate the
experiences of each illness. But with dementia I do not have the years to put
into adapting. I no longer have the 126 IQ to soak in the book knowledge.
Most research focuses on Alzheimer’s. I guess because it is
the most prominent of all dementias and maybe the most devastating. And
Alzheimer’s is one that has no underlying cause from another disease. And
according to most recent studies, even with all those research groups I listed
Alzheimer’s and other dementias are still lagging behind among other illnesses.
Alzheimer’s and other dementias alone is the most expensive
diseases in the U.S. on state health care budgets, personal life savings of
millions of victims and their families. But dementia robs more than money. It
steals our memories, our independence and finally steals our dignity by eroding
the ability to manage the basic tasks of daily life.
Recent studies have shown that the cost of care for dementia
in the U.S. has surpassed the cost of cancer treatment or heart disease.
Research into both cancer and heart disease has made it possible for their number
to decline. Huntington Potter, a neurobiologist at the University of Colorado
School of Medicine was quoted saying, If we don’t some control over this
disease it’s going to bankrupt both Medicare and Medicaid.”
Earlier this year Washington has committed multi-billions of
dollars into the research of cancer, heart disease, and HIV/AIDS while dementia
only will receive in the low millions. It’s just a fact that some diseases and
illness do have a political agenda that leads to federal funding.
Why has the federal government been so stingy about funding
research on a problem that cost the nation more than any other medical
condition? Different possible reasons.
There is still a stigma attached to Alzheimer’s and other
dementia. People don’t want to talk about. The cancer advocacy groups, even the
eating disorder groups, are extremely well organized, vocal and politically
skillful, with their Race for the Cure and everybody is wearing pink or green
for a month. But no one wears purple for a month.
Another reason may the fact that in the typical course of
Alzheimer’s. It can take years or decades for the protein blockage in the brain
to cause diagnosable cognitive problems. Science and doctors are not good at
guessing let alone getting ahead of slow-progressing conditions.
Another reason could be because with diseases such cancer or
HIV/AIDS, there are high-profile survivors who can tell their own stories in
their own words to promote research and personal motivation. But dementia is a
disease with no survivors….since there have been no survivors so far, who can
personify a campaign for more federal funding?
It’s obvious we need more and better research here in the
U.S. As well as support for people with dementias. In my town there are none.
Maybe that’s a good for me to get proactive and get one started.
