Renown Dementia Expert Coming To Florida

Dementia care expert Teepa Snow is making several presentations in our area this month. An occupational therapist with over 40 years of experience, Ms. Snow helps families and professionals understand how it feels to live with a neurodegenerative disorder. Her company, Positive Approach to Care, provides education and training to families and professional caregivers alike. Ms. Snow's presentations are very popular and an RSVP is required.

Wednesday, January 22, 9:00am – 11:00am
The Typical Progression of Dementia and How to Help
Intergenerational Recreation Center
1590 9th Street SW, Vero Beach, FL 32962
RSVP: (772) 463-1112

 
Wednesday, January 22, 1:30 p.m. - 3:30 p.m.
Managing Behaviors Starting with Yourself
The Kane Center
900 SE Salerno Road, Stuart, FL 34997
RSVP: (772) 463-1112

 
Thursday, January 23, 9:00 a.m - 11:00 a.m.
*for professionals only
Identifying Risk Factors for Dementia and Deciding What to Do About It
Addington Place, 1031 Community Dr., Jupiter, FL 33458
RSVP: (561) 202-6939

 
Thursday, January 23, 1:00 p.m. - 3:30 p.m.
*for families
Understanding Dementia from Everyone’s Point of View
Addington Place, 1031 Community Dr., Jupiter, FL 33458
RSVP: (561) 202-6939

Finding Love When Your Spouse Has Alzheimer's Disease

A wonderful and poignant segment from CBS "This Morning" about a topic that's rarely discussed publicly. Listen to the stories of people who while caring diligently for spouses affected by Alzheimer's, have found companionship with others.  They talk about the stress of caregiving and others' judgments. Watch all the way through. 

Film "What They Had" Focuses on Family Coping With Alzheimer's Disease

Update 11/29/18: This film is no longer playing locally.

With Alzheimer's Disease and related dementias on the rise, the new film "What They Had" will resonate with many American families coping with caregiving responsibilities. First-time writer-director Elizabeth Chomko has loosely based the film on her own family. Chomko's grandmother was diagnosed with Alzheimer's seventeen years ago and died just recently.

The film stars Blythe Danner as the family matriarch who has Alzheimer's. The family situation reaches a crisis point when she wanders out in the snow wearing only pajamas. Her daughter, portrayed by Hillary Swank, returns to her hometown to help out, at the urging of her brother, played by Michael Shannon. The siblings clash over caregiving responsibilities, and what is best for their mother and for themselves. Complicating the scenario is their father, played by Robert Forster, who refuses to consider placing his wife in a facility. 

For actors Danner and Swank, the film was particularly meaningful. Both have had personal experience caring for ill family members. Danner cared for her late husband Bruce Paltrow, and Swank, for her father.


This family dynamic will likely ring true for anyone who has faced the challenge of caring for a parent, spouse or other loved one with Alzheimer's. Among those challenges is how to pay for the extraordinary costs of long-term care that many Alzheimer's patients will eventually require. In Florida, the median cost of a private room in a long-term care facility is now over $100,000 (2018 Genworth Financial Cost of Care Survey). The attorneys of The Karp Law Firm counsel many families in this crisis, and can often help them tap into Medicaid benefits and/or Veterans Aid and Attendance benefits before losing everything to nursing home costs. 

Click below to listen to an interview with the actors discussing caregiving challenges, Alzheimer's Disease, and their roles in the film.

CHRONIC Act expands coverage for Medicare Advantage enrollees with chronic illnesses

Beginning in 2020, people enrolled in Medicare Advantage plans who have chronic illnesses will be covered for certain supplies and services not previously covered. Examples include bathroom grab bars and wheelchair ramps; and services such as home meal delivery, at-home visits from personal assistants and pharmacists, and transportation to/from doctors' visits. Medicare Advantage plans currently serve about one third of Medicare’s 60 million beneficiaries.


Those with chronic conditions such as rheumatoid arthritis, stroke, heart disease, diabetes, Alzheimer's and Parkinson’s will benefit. The AARP reports that more than two thirds of current Medicare beneficiaries have multiple chronic conditions. These individuals account for 75% of all Medicare spending, according to Kenneth E. Thorpe, chairman of Emory University's health policy department. 


The new policy arises from the passage earlier this year of the CHRONIC Act (“Creating High-Quality Results and Outcomes Necessary to Improve Chronic Care"). The law received bipartisan support. Its proponents anticipate that covering these services and supplies will result in better patient outcomes and save Medicare money in the long run. 


The new law also expands coverage for telehealth services, in recognition that those with one or more chronic conditions often face obstacles to traveling for medical care and are often better off staying away from the doctor's office if they have a compromised immune system. The new law will also expand telehealth services for anyone experiencing symptoms of stroke, covering the cost of a neurologist to remotely review CT scan images and recommend treatments, including the use of highly effective clot-busting drugs. 


The Department of Health and Human Services is currently working out the details for the program.You can read the CHRONIC legislation here.

Houston, We Have A Problem

Houston, we have a problem.

Nearly 50 years after becoming the second man to walk on the moon, Buzz Aldrin is undertaking a more earthly mission: fighting guardianship proceedings  to stay in control of his own affairs.

In May, two of Aldrin’s three children asked a Florida court to grant them guardianship over their father so they can manage his financial affairs and make other decisions for him.  Andrew Aldrin, 60, and Janice Aldrin, 51, claim that their 88-year-old father, now a Satellite Beach resident, has Alzheimer’s Disease and is being manipulated by others and spending money at an alarming rate.

The Apollo 11 pilot is having none of it. On June 7 the he filed a lawsuit against his children and his business manager, Christina Korp.  “Nobody is going to come close to thinking I should be under a guardianship,” he told The Wall Street Journal. Aldrin requested an evaluation from James Spar, a geriatric psychiatrist at UCLA. According to Spar, Aldrin scored normal to superior on tests of cognitive ability. Spar concluded that Aldrin is "...substantially able to manage his  finances and resist fraud and undue influence."

Aldrin's lawsuit is multifaceted. It accuses his son, daughter and business manager  with elder exploitation and misuse of funds. He claims that Andrew, who is involved with his businesses and nonprofit ventures, has stolen half a million dollars from him and used his credit card without authorization. He alleges that Janice has failed to perform her fiduciary duties. The lawsuit also accuses Andrew and Korp of seizing control of millions of dollars of Aldrin's "space memorabilia" and "space artifacts." Aldrin claims Korp has been taking, without his knowledge, a 5% commission on all the speaking engagements she has booked for him.

Aldrin claims all three have slandered him and his legacy by telling people that he has dementia in order to "...gain further control over Plaintiff's personal relationships, business contacts and assets." He says that his children have taken his passport away from him, and undermined his romantic relationships by forbidding him to remarry. Aldrin is thrice divorced.

Janice and Andrew deny their father's allegations and have pushed back. Through their lawyer, they issued this statement: "We are deeply disappointed and saddened by the unjustified lawsuit that has been brought against us individually and against the Foundation that we have built together as a family to carry on Dad's legacy for generations to come." Interviewed on Good Morning America about the situation, Aldrin called it "the saddest thing that has ever happened in my family." Watch the interview here. 

Aldrin was scheduled for another mental health evaluation on June 26 and 27. At this writing, the results are not yet known. Aldrin says he expects to pass with "flying colors" - an appropriate boast from the former air force colonel who flew to the moon and back. Aldrin remains an outspoken advocate for travel to Mars. In June he occupied a front-row seat when the president announced the formation of the Space Force, the sixth official branch of the military. 


Remember, you don't need to be an astronaut to find yourself the subject of a guardianship. Your best defense doesn't require a visit to the moon - just a consultation with a competent estate planning attorney.

Hear Kim Campbell talk about her Alzheimer's journey, June 12 in West Palm Beach

Our law firm is co-sponsoring this wonderful event on June 12!

What Can You Do If You're Denied Visitation With An Incapacitated Loved One?

Recent news is replete with stories about spouses, guardians and caregivers accused of refusing to allow family members to visit an incapacitated loved one. These stories have made headlines because they involved celebrities. Among them were disc jockey Casey Kasem and actor Peter Falk. Of course, the problem is not confined to celebrity families. When it happens to "ordinary" people, the stories just don't make headlines.

The most recent high-profile case is that of Glen Campbell, who died from Alzheimer's Disease in 2017. His children from a prior marriage allege that their stepmother Kim, Campbell's wife, did not allow them to see their ailing father. Son Travis said he learned she had moved his father from California and into a Tennessee assisted living facility only when he heard it on the news. Kim denies his allegation. She has said Travis was an absentee son who had not visited his father in 20 years. She told Inside Edition: "I never denied them a visit, ever. They never ever called me to ask how he was doing... It's a nightmare to have people on the internet threatening to kill you because they think you're this horrible person who wouldn't let people visit, which is totally false."


Whomever you believe, the Campbell family's conflict spurred Tennessee to pass legislation providing legal recourse to family members denied visitation with an ailing family member. "If there had been a law in effect," Travis says, "I would have had the most precious gift of all - time with my father."

Peter Falk's daughter has established the  Catherine Falk Organization that advocates for laws protecting the rights of family to visit incapacitated loved ones. Eleven states - unfortunately, not yet Florida - have adopted visitation laws. Surely more will do so as the population ages and the problem becomes more widespread. Below is a graphic from the Pew report showing the states that currently have visitation laws on the books.

Singer Glen Campbell's estate plan cuts out three of his children

When country music legend Glen Campbell was living, his family feuded over control of his money. Now that he’s gone, they are likely to continue feuding over it - just on a new front.  Considering the singer had eight children from four different marriages, and leaves behind an estate estimated at $50 million, the infighting is not exactly a surprise.

The Rhinestone Cowboy was diagnosed with Alzheimer’s Disease in 2011. But he and his fourth wife, Kim, 22 years his junior who he married in 1982, did not shrink from the public eye. On the contrary. Campbell released a final album, “Ghost on the Canvas,” went on a “Goodbye Tour,” and participated in a documentary, "I'll Be Me," about his and his family's journey through Alzheimer's. Campbell entered a memory care facility in 2014, but Kim continued to keep the public updated on his status. On August 8, 2017, Campbell died, age 81.

The family infighting started when Campbell entered the memory facility. Two of his children, Travis and Debby, alleged that their stepmother Kim was mishandling their father's assets, not visiting him or providing him with necessary items such as clothing and toiletries, and that it was inappropriate for Kim to allow their father to be filmed while in the late stages of Alzheimer’s. They requested the court assign a guardian to handle his medical and financial affairs. 

Kim addressed those allegations in a recent People interview. “They said I was withholding basic necessities like a toothbrush," she told the magazine. "The reality was he had plenty of toothbrushes but we kept them locked away because he didn’t know what it was and would rinse them in the toilet. They never asked. They only attacked. To be slandered while he was dying was beyond the pale. It was very painful.”

Travis and Debby also alleged that Kim prevented them from seeing their father and “participating in his care and/or treatment.” On this point they scored a legal victory, as it prompted Tennessee’s governor to sign the Campbell/Falk Law on May 2016. Under the law, family and close friends must be permitted contact with their loved with Alzheimer’s or dementia, regardless of the guardian’s wishes.

Now to the newest battlefront. The Tennessean reports that Campbell’s will was recently filed in Nashville probate court. Executed in September 2006, it specifically excludes Kelli, William and Wesley, the three children from his second marriage. They are cut out of his estate and are not beneficiaries either under the will or a related family trust. Kim is named as executor, and half of her bequest will go to the family trust. 

The court will hold a hearing on January 18 regarding the contents of the will, but don’t expect Kelli, William and Wesley to leave Campbell’s estate plan unchallenged. The family bickering will likely go on for some time.

Bill Gates Digs Deeper Into Alzheimer's Disease

Bill Gates has taken on a new mission: defeating Alzheimer's Disease. And he's approaching it with the same out-of-the-box thinking that led him to create Microsoft. He recently contributed $50 million of his own money (not his foundation's) to the project.

The philanthropist's father just turned 92 and is doing well, but as Gates notes, he is one of the lucky ones: Statistics show that if one makes it to age 80, the chances of developing the disease are about 50%. And Alzheimer’s is the only one of the top ten causes of death in the U.S. for which there is no effective treatment or cure. That's a fact that does not sit well with Gates' inner innovator.

After studying the tremendous emotional and financial toll the disease takes on families and society, Gates decided to plow $50 million into the Dementia Discovery Fund. The fund is a unique collaboration of industry, charity and government, based in the U.K. While most research into Alzheimer’s focuses on the two proteins which seem to be involved with Alzheimer’s, amyloid and tau, the Dementia Discovery Fund is examining other disease pathways and more unconventional treatments. Writes Gates: “We’ve seen scientific innovation turn once-guaranteed killers like HIV into chronic illnesses that can be held in check with medication. I believe we can do the same (or better) with Alzheimer’s.”

Several of his own family members succumbed to the disease. “I know how awful it is to watch people you love struggle as the disease robs them of their mental capacity,” he notes in his blog, “and there is nothing you can do about it. It feels a lot like you’re experiencing a gradual death of the person that you knew.”

Unlike Gates, most American families lack sufficient financial resources to care for loved ones affected by Alzheimer’s Disease. Many still believe that Medicare covers the cost of long-term care; discovering it does not is a frightening wake-up call for many Americans. Without generous long-term care insurance, middle class families are turning to other solutions, like Medicaid and Veterans benefits, or risking the loss of everything they've worked for.

Kudos to Bill Gates. We hope his efforts will open new “windows” into this dreaded disease, and eventually, lead to an effective cure or treatment. We really need the breakthrough.

Read Bill Gates’ blog post, Why I'm Digging Deeper Into Alzheimer's.

To read about Medicaid benefits and Veterans benefit for long-term care, click here.
 

Find out more about the Dementia Discovery Fund.

If You Knew You Had a Good Chance of Developing Alzheimer's, What Would You Do? What Should You Do?

Suppose you could find out if you have a greater-than-average chance of developing Alzheimer's Disease. Would you want to know? What would you do with this information?


One of the genetic secrets revealed in recent years is the relationship between the APOe4 gene and Alzheimer's Disease. About 40% of those who develop the late onset form of the disease (the most common form) carry this gene variant. While inheriting the APOe4 gene increases susceptibility, it by no means seals the deal; environmental factors such as diet and lifestyle also seem to play a part in determining who will or won't develop the disease.

Recently, the company 23 and Me began offering APOe4 testing. All you need to do is swab your cheek and send off a saliva sample. The company provides you with the results, which it promises will remain confidential and never be released to third parties. 


But just because you can know if you carry the gene, would you want to know? Positive results could have negative psychological ramifications. It might be a Pandora's box for someone with a low threshold for worry, creating years of anxiety over something that may never happen. Even if the results spur someone to adopt a healthier lifestyle, adhering to the regimen will not necessarily prevent the disease from manifesting.


On the other hand, someone who tests positive gets an opportunity to make important family, financial and legal plans that he/she might not otherwise make. Alzheimer's Disease is a staggeringly expensive condition. Families who don't prepare can be blindsided by the expense, which often includes long-term nursing care. Medicare does not pay for that type of care. A person who knows he/she has a heightened risk of developing Alzheimer's can take proactive steps to protect family and assets, such as Medicaid planning or purchasing long-term care insurance. 


The insurance industry is concerned about the possibility of more and more people being tested, learning they carry the gene, then purchasing long-term care insurance. A 2005 study, "Genetic Testing for Alzheimer's Disease and Its Impact on Insurance Purchasing Behavior," published in the journal Health Affairs, drew on clinical trials of 1,000 people. The study revealed - unsurprisingly - that those who have learned they carry the APOe4 gene are five times more likely than the average person to apply for long-term care insurance. If the now-readily available test becomes widely used, it could create a pool of insureds more likely to collect on their policies in the future. This would skew actuarial projections and put the long-term care insurance industry in financial jeopardy. Robert Cook-Deegan, one of the researchers who participated in the study, likens testing positive for APOe4 and then buying long-term care insurance to "...taking out a million-dollar life insurance policy the day before you know that you're going to die," adding, "The stock market would call it trading on insider information."


The study also found that applicants felt no obligation to divulge the reason they suddenly wanted a policy. While long-term care insurers are exempt from the 2008 Genetic Information Nondiscrimination Act and have the legal right to ask applicants if they have had genetic testing and to request the results, at this point most insurers do not pursue the matter. That could change if the industry finds itself under pressure. 


Still interested in getting tested for APOe4? You might want to hold off and follow the advice of Jill Goldman, genetic counselor at Columbia University's Taub Institute: Purchase long-term care insurance before you go for testing, because what you know might eventually be used against you.

Six years post diagnosis, Glen Campbell's wife reports on the Rhinestone Cowboy

As I reported in my post in 2013, acclaimed country music singer-songwriter Glen Campbell was diagnosed with Alzheimer's Disease in 2011. This was not entirely a shock to his fans, who had noticed the Rhinestone Cowboy forgetting lyrics during performances. At home, he had begun getting lost while driving well-known routes he'd traveled for years.

Campbell, his wife Kim and children never hid the diagnosis. On the contrary, they leveraged Campbell's high profile to bring attention to the disease.  In 2013 the Grammy Award-winning musician and his daughter testified in front of a U.S. Senate Subcommittee, explaining how the disease was impacting them and urging legislators to support research.

Kim, Cambell's wife of 34 years, cared for her husband at home until she found her strength rapidly decreasing and her worries about his safety increasing. She was always on alert to make sure he didn't fall down the stairs in their home. Eventually, he would no longer allow himself to be bathed. So, in 2014, the family decided that Campbell would be better cared for at long-term care facility in Nashville.

Now, six years after diagnosis, Kim has provided USA Today with an update on both of them. Unsurprisingly, Kim suffers from depression, but tries to remain socially and physically active. She writes a blog that provides information and support for caregivers. She visits Campbell, now 80 years old, nearly every day. He has declined significantly and is in the last phase of the disease. (The average life span after an Alzheimer's diagnosis is 2 to 8 years.) He is no longer able to play the guitar or sing. He is aphasic and can only utter a few words. When his daughter Ashley visits, she plays the guitar and sings for him. "You Are My Sunshine" seems to be one of his favorites. Kim credits her husband's musical mind for holding off the worst of his symptoms for a longer time than is usual, since music "sparks the brain." 

According to the Alzheimer's Association's 2017 report, Alzheimer's is the most expensive disease in America. Our Florida elder law attorneys meet regularly with families struggling to stay afloat financially while shouldering the cost of a loved one's long-term nursing care. According to the Alzheimer's Association, spending on Alzheimer's and other dementias will be $259 billion this year, and $1.1 trillion by 2050 if no cure or treatment is found. Every 66 seconds, someone in America develops the disease. If we had a treatment that could delay the onset by just five years - not cure it, just delay it - Medicare spending could be reduced by almost half in 2050.

The Campbell family's journey is especially timely now, as funding for the research they championed may be in the crosshairs. The National Institutes of Health (NIH), responsible for conducting and coordinating Alzheimer's research with other organizations, is facing a $5.8 billion cut under the White House's proposed budget, America First: A Budget Blueprint to Make America Great Again. While there was bipartisan support for a 2017 congressional appropriations bill to increase funds for Alzheimer's research, there is no guarantee that this area of research will be insulated from the proposed cuts. Any cuts could certainly slow progress toward the goal of having a cure or treatment by 2025, says Bruce Lamb of the Indiana School of Medicine. And the organization USAgainstAlzheimer's notes that starving Alzheimer's research could spell disaster for America's fiscal future. If you support robust funding to find a cure or treatment, be sure to let your representatives and senators know!

If you have a loved one with Alzheimer’s, consult our lawyers about how you may be able to tap into Medicaid and/or VA benefits before you lose everything to a nursing home. Even if you are healthy now, we can help you prepare in case disability strikes in the future.

Let's all keep working toward a world without Alzheimer's!

David Cassidy, 1970s teen hearthrob, suffering from dementia

Fans knew something was wrong when he could not remember the lyrics to songs he'd sung for decades. But for David Cassidy, it was a long-held fear come to fruition.

The 1970s teen heartthrob who gained fame on the Partridge Family television show, David Cassidy announced last month that he is suffering from dementia. He is no stranger to the disease. His grandfather had dementia. His mother, actress Rachel Ward, was diagnosed with Alzheimer's Disease in 2002, passing away ten years later at age 89. In recent years the musician has become an advocate for Alzheimer's research; in 2012, he auctioned off some of his old costumes to benefit the Alzheimer's Association.

Cassidy is not shying away from discussing his diagnosis. "People don't really want to talk about it, but we need to, which is why I'm going to be speaking publicly about it," Cassidy told the Daily Mail. He will appear on the Dr. Phil show on March 1, and the March 6 issue of People will feature an interview, "My Battle with Dementia." Cassidy's last concert, capping off 49 years of touring, is scheduled for March 4 at BB Kings in New York.

Nearly 80% of dementia cases are caused by Alzheimer's Disease, but other diseases may also trigger it. For example, vascular dementia is caused by damage to the brain's blood vessels. Lewy Body dementia, which afflicted Robin Williams and radio personality Casey Kasem, is brought on by  abnormal protein deposits in the brain. Those with a family history of dementia appear to be at greater risk. It occurs mainly in older people; a 2016 study in the Journal of the American Medical Association found that only 3% of people between ages 65 and 74 have dementia. Although the disease is degenerative and progressive, certain habits, such as a healthy diet and exercise, may forestall the diagnosis or slow progression.

It's a modern-day catch 22: Thanks to medical advancements, we are living longer. But because we're living longer, we are more likely to experience chronic disease. And it's not only a medical problem: Increasing numbers of families now struggle with the cost of a loved one's long-term care. Although there is no cure yet for dementia, there may be a solution to the financial dilemma it can create. You may be able to tap into Medicaid benefits without "spending down" and losing your nest egg to nursing home costs. And if you are a veteran or the widow of a veteran, you may under certain circumstances qualify for VA Improved Pension with Aid and Attendance.  Contact our firm for assistance from our Florida Bar Certified Elder Law Attorneys.