While research continues and clinicians look forward to promising studies slated for the July International Conference on Alzheimer’s Disease (AAICAD) in Paris, caregivers and families are asking, “But how do we get through today?”
For patients as well as families the challenges can be overwhelming as The Huffington Post and AP reported yesterday in its look at “A Bittersweet Season: Caring for Our Aging Parents and Ourselves,” by journalist Jane Gross.
They noted that Gross “went on to launch a blog called The New Old Age, [which] recounts her own experiences in shepherding her mother through the intricacies and indignities of long-term care.” Memoir highlights long-term health care challenges – Huffington Post
Challenging choices
As I wrote recently in the Providence Journal, families who are experiencing Alzheimer’s face difficult choices. While some believe in keeping a patient in familiar surroundings, it clearly takes it toll on caregivers. The Alzheimer’s Association in March noted that an estimated 5.4 million Americas are affected with the disease that has about 15 million family members and friends acting as unpaid caregivers giving 17 billion hours of support. (www.alz.org/facts).
Daniel Z. Press, M.D., a neurologist at the Division of Behavioral Neurology at Beth Israel Deaconess Medical Center, in Boston, who see the range of emotions experienced by caregivers, says, “I always tell children or spouses to separate the person from the disease.” When they get angry, they should get angry at the disease that is taking away someone they love. But to continue giving good care, they need a rest to recharge their batteries.”
He also pointed out the value of positive reinforcement when dealing with patients. “We try to work with patients and families together, not separately.” And he stresses, “There is a lot of evidence that negative actions do not work.”
The nursing home option – Mayo Alzheimer’s Disease Research Center
Nursing home directors are faced with how to balance patient needs and desires as well as involve family members in care plans. And families are concerned about care.
“Quality care comes from nursing leadership that sets high standards for the nursing assistants — who actually do the hands-on care.”
David Knopman, M.D., who is co-investigator at the Mayo Alzheimer’s Disease Research Center and a professor of neurology at Mayo Clinic College of Medicine, says: “I am not an expert on design of nursing homes, but having worked around them for many years it seems as if the best facilities are the ones with the most engaged nursing leadership. It is nice to have a clean, bright, safe physical environment, but in my experience, the quality of the staff is far and away the key issue.”
“Quality care comes from nursing leadership that sets high standards for the nursing assistants — who actually do the hands-on care,” he said, adding: “Thoughtful nursing leadership also helps to set an example by showing skill in defusing situations where residents are on the verge of becoming physically aggressive. Skillful nursing leadership also knows how to avoid the use of psychoactive (psychotropic) medications. In essence, quality care comes from the respect and patience that the nursing assistants show patients.”
Nursing homes in Massachusetts, the first state to adopt health insurance
In many cases it is as difficult to choose a place for parents as it is to choose the best nursery school, private school, or college for children.
Since Massachusetts became the first state to adopt a universal health insurance statute in 2006, I talked to several administrators to determine challenges. In addition, I spoke with State representatives who find they are being called upon to help families through the paperwork maze as is required by those who do not have long term care insurance.
The universal refrain: “It’s a mess.”
Looking at some facilities in the State, there is the Aurum Post Acute Network, an association of independent providers in Massachusetts of about 30 members ranging in size from single facilities to multi-facilities including skilled nursing, assisted living residences, and independent living centers. My question was simple: “What is the greatest challenge?”
Park Avenue: Each person is unique
John Alessandroni, Executive Director and President of the Park Avenue and a board member of the Massachusetts Senior Care Association, said:
“The greatest challenge to delivering care to residents with Alzheimer’s and dementia relates to the specialized needs of this population. Each individual with Alzheimer’s is different and unique, and therefore may require a specialized approach to meeting his or her care needs.”
He is concerned about the potential impact of the Health Care Reform law and the talk of proposed funding cuts for the elderly noting: “It will enroll approximately 30 million additional individuals in health insurance plans at a time when our country and our economy are still struggling to recover from one of the worst recessions in its history.
“It will reduce reimbursement of Medicare and Medicaid to providers, forcing some facilities out of business.”
He pointed out, however, the advantage of running a small family-owned home for Alzheimer’s and dementia residents. “Our small size is one benefit to our residents as well as low staff turnover and consistent staff assignments. All of these factors allow us to get to know our residents better and to develop individualized care plans to meet their specialized needs.”
The running lean challenge
He added: “Recently I spoke with a friend who works in the HR department of a very large Boston law firm who explained their desire to re-engineer to increase productivity and reduce operating costs.
“I told her we have learned over the years to operate very efficiently and run lean as a result of low reimbursements. We currently lose over $50 a day on every Medicaid patient we serve. My biggest challenge is how to continue to be able to pay our bills with the prospect of possible further reimbursement reductions in the future.”
He reminded me of what happened when energy prices spiked after Hurricane Katrina hit the Gulf coast in 2005. His friend, who managed a tree service raised customer prices to compensate for the higher gasoline costs to operate his truck fleet, and expected that he should do the same.
Alessandroni pointed out, however, “Since the vast majority of our revenues are paid for by the federal government (Medicare), state government (Medicaid) and private insurance carriers, I can’t do that. We don’t tell them what to pay us. They tell us what we will be paid. Such is the nature of our business.”
When money is tight do special services get cut?
The Park Avenue home has been run by the same family since 1938, started by patriarch Nino Alessandroni. As such services do not get cut because everyone pitches in. Michael Giannattasio is Director of Human Resources. Nonetheless he spends at least every other week-end night as the Movie King. He selects a movie and then carries out the theme. For example, when he showed Chorus Line, all the residents received gold speckled top hats and, of course, popcorn and ice cream.
He said: “Every resident who attends the movie has a blast! The movie impacts all the residents. The key is the sharing between each resident and the conversations that occur both at the start of the movie and at the end of the movie.”
“When the popcorn is passed around the residents must feel as if they going into Mr. Peabody’s way back machine and traveling to an old drive in movie or a 1950’s movie theatre. It is truly amazing that the next day after the movie that the residents seem to remember!”
Triggering memories
Giannattasio added: “I also believe that in some cases memory is not taken away, but that for some residents their memories are in there waiting to be harvested again. When residents hear Julie Andrews and Christopher Plumber sing “Edelweiss” from the Sound of Music, it brings them back to a happy place. And we all sing together. Stimulating these memories through the movie often leads from one great memory to another great memory. Movies can enliven a resident in some ways that nothing else can beat. As they stated at the end of the Movie Casablanca, ‘Louie, this is the start of a beautiful friendship.’”
The challenge and the joy
While legislators struggle with budgets, families struggle with paperwork, caregivers struggle with burn-out, and researchers’ struggle with testing — We must distinguish between tests for research, treatment — some people focus on caring. It is refreshing to note that in some nursing homes, from those in the Mayo Clinic sector to smaller ones in Massachusetts —
There are people who care even as they give care.
What many are coming to realize is this. Even if residents forget the joy they experience a half an hour later, during times of movies and music, they are young again.
Adapted in part from my Providence Journal column with special interviews to report the Massachusetts experience. Rita Watson: Advances against Alzheimer’s .
This article will also be adapted and published under National Health News Examiner/ Rita Watson | Examiner.com
Disclosures:
With a Masters in Public Health from the Yale School of Medicine and studies at the Yale Law School with then Dean now Judge Guido Calabresi, US Court of Appeals and the late Ethics scholar, Jay Katz, MD, my work has long focused on patient advocacy. Additionally we have family members with dementia residing within network homes.
For a catalogue of recent articles, please see the home page: www.ritawatson.com
Copyright 2011 Rita Watson/ All Rights Reserved