News of a blood test to predict who will develop Alzheimer’s disease has been met with excitement and trepidation. By identifying those at risk for Alzheimer’s, researchers might find success with medications that have not worked in the later stages. New insights into how Alzheimer’s affects the brain would help researchers understand the disease better.
Without a cure, prevention, or effective treatment, the question arises—who would want to know if they were going to develop Alzheimer’s? Currently, fifty percent of Americans who have Alzheimer’s do not know they have the disease, but nearly ninety percent want to know if they have the disease.
The Health Outcomes, Planning, and Education (HOPE) for Alzheimer’s Act would provide Medicare services to diagnose Alzheimer’s disease. Early diagnosis would allow people to get their affairs in order while they had the capacity to do so. They could make lifestyle changes that research indicates could delay the onset. A healthy diet, exercise, and remaining socially engaged has many health benefits and has long been considered a boost for cognition.
The HOPE Act addresses problems with how the healthcare system currently works. Once a person has been diagnosed, HOPE for Alzheimer’s ensures that the newly diagnosed person and care providers will receive vital information with treatment options and support services available.
This Act promotes open communication between patient, the medical team, and caregiver. It would require documentation of the diagnostic evaluation to be provided in the patient’s medical record. This is a huge improvement! With the complete medical history in hand, care providers can help manage other diseases the person with dementia might have.
When my husband developed dementia at 49, the diagnostic process was lengthy. I kept a log of his symptoms, medications, drug reactions, and other health concerns. I shared this list with the many physicians involved in diagnosing and treating him. Not having this information would have adversely affected his care.
Being a caregiver for a loved one with dementia is a life-changing situation. Jim’s dementia is the reason I have been an advocate on state and national levels for the past fifteen years.
In April, my sister, Roberta Fischer and I will join more than 750 Alzheimer’s advocates in Washington, D.C. for the Advocacy Forum. Along with other Missouri advocates, we will visit Senator Roy Blunt (R), Senator Claire McCaskill (D), and Representative Vicky Hartzler (R). The fight to end Alzheimer’s is a bipartisan effort.
When legislation that makes so much common sense comes along, it is time for everyone who has experienced Alzheimer’s firsthand to write that email, make a phone call, or drop by a district office. I urge you to join your voice to ours by contacting your U.S. senators (S 709) and U.S. representative (HR 1507) and ask them to co-sponsor the HOPE for Alzheimer’s Act.
No one should ever be without HOPE.
copyright © March 2014 by L. S. Fisher
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