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HOPE for Alzheimer’s Act



In two weeks, I will be attending the Alzheimer’s Association National Advocacy Forum in Washington DC.  I am so thrilled to be a part of the discussion.  Next week I will be meeting with my district representative to encourage support of the HOPE Act (The Health Outcomes, Planning, and Education for Alzheimer’s Act).  The HOPE for Alzheimer’s Act is designed to provide early detection, diagnosis, and access to treatment.

Key steps to improving Alzheimer’s care:

  • Increase initial detection of cognitive impairment
  • Provide a comprehensive diagnostic evaluation, including referral to a specialist if recommended,  followed by documentation in the medical record
  • Provide access to information, resources and support services through care planning for newly-diagnosed individuals and their caregivers
  • Use improved documentation and care planning to coordinate care between caregivers, health providers and support services to improve quality of life, reduce caregiver burden and delay nursing home placement.

Early access to resources and accurate diagnosis will improve care and outcomes.  Please write to your congressmen to encourage support of this bill.  It’s so easy if you go to this website.

Here’s my letter.  I dressed it up a little bit, cause that’s how I roll.

Apr 11, 2013
Representative John Delaney
Longworth House Office Building, Room 1632
Independence and New Jersey Avenues, SE
Washington, DC 20515-2006
Dear Representative Delaney,
As I look around this room of highly educated, well-nourished, upper class, assisted-living residents, many of whom are retired Washington professionals, politicians, and movers-and-shakers, it becomes painfully obvious to me that this disease doesn’t just prey on the weak and feeble.
Nor does it search out the elderly as nature’s way of perpetuating the cycle of life.  Younger victims, men and women my age, who have jobs and families and barbecues on Sunday afternoons, are also occupants of these rooms.  Their spouses and young children have desperately searched Google for resources that don’t exist. They have no means of paying for “the room”, much less their mortgages, cars, childcare, and educations.
Every day this room grows more crowded.  Across the country, thousands of rooms just like it are busting at the seams, unable to accommodate the vast number of diminishing souls that wander in looking for their pasts… only to find their futures on a stretcher, draped by a sheet.
Clearly, the vast majority of Alzheimer’s victims are not financially well off.  Many can’t afford assistance at home or placement in a facility.  Most will outlive their resources; if you consider vacant stares and shrunken cerebral cortexes “living”.
As your constituent and a person knee deep in the care of people with Alzheimer’s disease, I respectfully request that you cosponsor the Health Outcomes, Planning, and Education (HOPE) for Alzheimer’s Act. As you know, Alzheimer’s is not only a crisis for our nation’s families, but also our economy.
This disease is going to bankrupt us, locally and nationally, and cripple our work force.  If we do not ever develop Alzheimer’s disease in our lifetime, chances are we will care for someone who does.  And what resources do we have?  HOPE is the first frontline attempt to help our nation cope with the tsunami of Alzheimer’s devastation.
As an occupational therapist, I can vouch for the efficacy of therapy services in the management of Alzheimer’s disease including physical, occupational, and speech therapy.  We focus on preventing falls, aspiration, skin breakdown, and contractures.  There are techniques that we can use to teach Alzheimer’s patients patterns of movement.   We can modify the environment and implement strategies that preserve function.  We cannot prevent the progression of the disease, but many times we can lessen the impact and prepare caregivers to handle the challenges. We can even sit in the drum circles, and hold hands, and sing Kumbaya if the science supports such measures.  We can improve the quality of life for all parties. 
Get them to us sooner, and we can do even more.
One cost driver is the lack of a formal and documented diagnosis, which complicates the effective management of other common chronic health conditions, such as heart disease and diabetes. This not only leads to inferior care, but worse outcomes, higher costs, and deprives millions of Americans access to treatments and services that could improve their quality of life. Sadly, this is all too common with as many as half of people who meet the diagnostic criteria never receiving a diagnosis.
In addition to an earlier diagnosis of Alzheimer’s disease, access to care planning would also have significant benefits for individuals, such as better understanding of the diagnosis, planning for predictable problems, avoiding crises, and maintaining the best possible quality of life. Allowing caregivers to also participate in care planning may also reduce cost of Alzheimer’s and improve quality of life.  Care planning could also lead to increased access to therapy services.  Preventative therapy interventions are more cost effective than repairing broken hips or treating pneumococcal infections.  Preparing and assisting caregivers will lessen their stresses as well, which will in turn reduce their risk of developing heart disease, diabetes, and obesity.  It’s a win for everyone!
The HOPE for Alzheimer’s Act would address these problems by providing access to a diagnostic evaluation and care planning services to individuals with Alzheimer’s disease as well as their family and caregivers. In addition, the Act would ensure that the diagnosis and care planning services are documented within the individual’s medical record. This important legislation also embraces recommendations made in the first-ever National Plan to Address Alzheimer’s Disease, which was released by the Department of Health and Human Services in 2012.
As an Alzheimer’s Association advocate, I encourage you take action today to improve diagnosis and care for those with Alzheimer’s disease as well as their family caregivers. I respectfully request that you cosponsor the HOPE for Alzheimer’s Act, which would provide access to a diagnostic evaluation, as well as critical services and supports for people living with Alzheimer’s disease and their families. This important legislation would also ensure that a diagnosis of Alzheimer’s disease or related dementia as well as any care planning services provided would be documented in an individual’s medical record.
Alzheimer’s is not going away.  Please help.  Thank you for considering this important legislation. I look forward to hearing from you about the HOPE for Alzheimer’s Act.
Sue M. Paul OTR/L
(aka The Dementia Queen)

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