Where's The Research?

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.