Denise Grady’s article, The Vanishing Mind: When Illness Makes a Spouse a Stranger, published as part of a series in the New York Times, discusses a rare form of dementia that affects between approximately 50, 000 and 60,000 people in the United States.

Frontotemporal dementia, also called Pick’s disease, is  ”…a little-known, poorly understood and frequently misdiagnosed group of brain diseases that eat away at personality and language. Although it was first recognized more than 100 years ago, there is still no cure or treatment, and patients survive an average of only eight years after the diagnosis.”

See the article  here  (or click the link with the video above) to read about the incredible strides being made toward a disease that is often called more devastating than Alzheimer’s – because it strikes younger people, progresses faster, and begins with bizarre personality changes as opposed to initially affecting memory – and to hear the story of Michael and Ruth French, a couple struggling with Michael’s dementia diagnosis.

For more specific information about Frontotemporal dementia, consult the National Institute of Neurological Disorders and Stroke website here.

At The Cameron Group, we strive to give our clients the best possible experience in later life – this video exemplifies the rewards possible in the eldercare profession!

Listen to more of Amy’s thoughts (and hear that contagious laugh for yourself!) in her interview with Real Life Careers, and watch for more updates on The Cameron Group’s Youtube Channel and Facebook!

Check it out: http://health.yahoo.net/experts/allinyourmind/5-ways-cut-your-risk-dementia#.Tx2bWjbT1b4.email

 AARP has published to results of a study about the effect of patient involvement in their own care. Involvement means having studied about the medical condition, the medications prescribed and having a grasp of the potential problems and solutions.

 It seems like an obvious conclusion, but the magnitude of the difference is striking. 

Those who are less involved are:

-         Twice as likely to be readmitted to the hospital

-         Twice as likely to experience a medical error

-         Three times as likely to have poor coordination between providers

-         Four times as likely to suffer a consequence due to poor coordination

-         Four times as likely to lose confidence in the healthcare

 If your elder gets a new diagnoses or goes into the hospital you need to go to work and learn about what is happening. Get online, the information you need is there, Google it! Write down your questions to ask the doctor or the hospital staff. Be sure you can also give each care provider all of the information about your elder. You need to take on the role of information coordinator. Assume each person involved with providing care is not aware of what the other providers have done. You may find that sadly your assumption is probably true.

Work on this as if their life depended on it, because too often it does.

caregivertips@elderissues.com

(aarp.org/bulletin)

About 200 advocates for the elderly and the poor jammed a public hearing in Orlando on Thursday to voice concerns about Florida’s proposed Medicaid overhaul –echoing the same reaction seen at public hearings throughout the state.

Although representatives from several HMOs offered examples of how they have coordinated care for patients and saved lives, most of the people at the hearing criticized the state’s plans to move most Medicaid recipients into managed-care plans.

“Managed care works if you’re well. It does not work if you have complex health problems,” said Amy O’Rourke of the Cameron Group, a professional geriatric-care management company based in Orlando. “I have 13,000 elders, and I have not seen one managed-care program work for elders with complex care.”

Thursday’s hearing was the 10^th in a series of 11 public hearings organized by the Agency for Health Care Administration during the past week. The state agency is gathering comments from Medicaid consumers, families and others about the state’s Medicaid proposal before submitting the plan to the federal government.

The public comments are to be forwarded to the U.S. Department of Health and Human Services, where officials must approve Florida’s proposed changes because they require a waiver of federal Medicaid rules. State agency officials said they plan to turn in the waiver request Aug. 1

In Orlando, advocates for the poor also warned that the state has based its Medicaid makeover on a five-year pilot project that was riddled with problems.

The new Medicaid managed-care program “will be built on the incredibly shaky foundation of the reform pilot of the last five years,” said Greg Mellowe of Florida CHAIN, a statewide advocacy organization focused on health-care issues. “You can imagine the uproar that would occur of a pharmaceutical company began selling a new medication without bothering to finish the trials. That’s what is happening here.”

Throughout the state, the hearings have been magnets for critics of the new plan. In West Palm Beach, more than 200 people packed an auditorium, where elder-law attorneys warned that the new Medicaid program would reward managed-care companies for moving senior citizens out of nursing-home care

And at a public hearing in Fort Lauderdale, Broward County Medicaid patients begged state health officials Thursday not to expand the managed-care program they say failed miserably in their county and prevented them from getting medications and doctor appointments, The Associated Press reported.

Yet Robinson Johnson, a registered nurse and certified case manager for Wellcare, told the Orlando audience how she coordinated care for patients and sometimes persuaded managers to make exceptions to get her HMO patients specialized care. “I haven’t ever heard, ‘We can’t do that,’ ” she said. “There’s another face to managed care: It’s people like me who really, really care about the [patient].”

Linda Solash-Reed, an attorney affiliated with the Florida Academy of Elder Law Attorneys, criticized the new law because she said no data prove it would save money. Worse, she said, the state has no evidence that the new program would work for senior citizens because they were not included in the original pilot project.

“No data, wrong data and bad data spells disaster for Florida taxpayers,” Solash-Reed said.

If approved, the state’s Medicaid managed-care program would be phased in, but the first group to be moved into managed care would be seniors in long-term care. The long-term care program would be fully implemented by October 2013, while the managed care for other Medicaid beneficiaries is scheduled to be fully implemented by October 2014, according to the state agency.

Although Sen. Joe Negron, one of the architects of the state’s Medicaid makeover, on Wednesday urged tea-party members to show up and express their support for the plan, it did not appear tea-party proponents attended the Orlando hearing. Negron has defended the Medicaid plan, saying that charges of “grant dumping” are scare tactics.

The public can also submit written comments by email to cynthis.mann@cms.hhs.gov or FLMedicaidManagedCare@ahca.myflorida.com, or letters can be sent to Centers for Medicare and Medicaid Services, Center for Medicaid and State Operations, 7500 Security Blvd., Mail Stop S2-01-16, Baltimore, MD 21244-1850

We came across this interested article and would like to share.

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