The Common Dementia Condition You’ve Probably Never Heard Of

Martha T.S. Laham

When you think back on the life of the late Robin Williams, you may remember him as being a brilliant comic, versatile actor, and generous humanitarian. You probably wouldn’t think of Williams, who tragically died at the age of 63 from an apparent suicide, as a dementia sufferer. Williams was struggling with a neurological condition known as Lewy body dementia (LBD), also called dementia with Lewy bodies (DLB), according to a coroner’s report.

As we age, dementia can cast a dark shadow on our lives. The reality is that dementia will somehow touch us all: You’ve probably met someone with dementia or have a family member who may be a dementia sufferer. A loved one may start having difficulty with short-term memory, losing things, forgetting to pay bills, refusing to bathe, forgetting to eat, getting easily agitated or confused, or developing faulty perceptions, all of which are common signs of dementia.

First, let’s describe dementia, and then take a look at LBD.

What Is Dementia?

Dementia is not a specific disease. Rather, dementia is “the name for a group of symptoms caused by disorders that affect the brain,” says the National Institutes of Health (NIH). Various diseases, infections, strokes, head injuries, drugs, and nutritional deficiencies are frequently cited as primary causes of dementia.

About 47.5 million people worldwide are currently living with dementia. This figure is expected to double every 20 years, climbing to 74.7 million in 2030 and 131.5 million in 2050, according to an Alzheimer’s Disease International report. Startlingly, every four seconds a new case of dementia is diagnosed.

Alzheimer’s disease accounts for 60 to 80 percent of dementia cases. Vascular dementia is commonly thought of as the second most frequent type of dementia, followed by LBD. As a degenerative disease, dementia in most of its forms is irreversible, although prescription drugs on the market can slow its progression or minimize its symptoms.

What Is Lewy Body Dementia?

As a general term, LBD can be divided into two related forms: Parkinson’s disease dementia and dementia with Lewy bodies. Whereas early symptoms of these two conditions differ, the fundamental brain changes are the same. “Over time, people with both diagnoses will develop very similar cognitive, physical, sleep, and behavioral symptoms,” says the Lewy Body Dementia Association (LBDA).

Lewy bodies are abnormal deposits or clumps of protein that develop inside neurons (nerve cells) in specific regions of the brain. When deposits build up, they damage and eventually destroy brain cells, which can lead to problems with thinking, movement, behavior, and mood.

How Is Lewy Body Dementia Diagnosed?

About 1.4 million Americans are afflicted with LBD, representing 10 to 25 percent of all dementia cases. Despite its prevalence, LBD is the most misdiagnosed dementia, often missed entirely.

As with other types of dementia, no conclusive laboratory test for LBD exists. Currently a clinical diagnosis of LBD is made chiefly through a full dementia evaluation. Only a brain autopsy can confirm a diagnosis of LBD.

Robin Williams’ autopsy report showed the presence of diffuse Lewy body disease. An ABC News article stated: “Robin Williams had a common but difficult to diagnose condition known as Lewy Body Dementia and this may have contributed to his decision to commit suicide last August [2014], according to documents included in his autopsy report.”

What Are the Symptoms of Lewy Body Dementia?

LBD is characterized by a progressive decline in a person’s mental abilities. Mayo Clinic provides a comprehensive list of signs and symptoms of LBD, including visual hallucinations; cognitive issues, such as problems with confusion, alertness, thinking, and memory; movement problems, such as slowed movement, tremors, a shuffling walk, or falls; and depression, anxiety, and apathy.

In an ABC News interview, Susan Williams, Robin Williams’ widow, spoke movingly about her husband’s struggle with the devastating symptoms of LBD. Susan also talked about the difficulty and slowness in getting an accurate diagnosis of the disease. “Lewy body dementia is what killed Robin,” she said in the interview. “It’s what took his life, and that’s what I spent the last year trying to get to the bottom of, what took my husband’s life.”

What Are the Risk Factors for Lewy Body Dementia?

Known risk factors for LBD are gender (male) and advanced age, while a potential risk factor is a family history of dementia.

Research studies provide fresh insights into risk factors for LBD. In one study, researchers found that the interaction between genes and environmental factors may increase susceptibility to developing Lewy body pathology. Also, a case-control study concluded that depression and low caffeine intake may increase a person’s risk of developing dementia with Lewy bodies, among other factors.

Why Is It Important to Learn About Lewy Body Dementia?

As we’ve discovered, LBD is a common neurological condition, often misunderstood and misdiagnosed. LBD can have a significant impact not only on people with LBD but also on family members and caregivers, who often shoulder the burden of caring for LBD sufferers.

In a People story titled “Robin Williams and the Brain Disorder That Drove Him to Suicide: What Is Lewy Body Dementia?” Dr. Alexander Y. Pantelyat, assistant professor of neurology and director of Atypical Parkinsonism Center at Johns Hopkins Medicine, remarks on the insidiousness of this illness:

“It affects your core, it affects who you are as a person. In the case of DLB and some of these other related disorders it tends to a great extent [to] affect the frontal lobe, which is really what makes us human. It’s really unbelievably devastating.”

You can learn more about Lewy body dementia by visiting the Lewy Body Dementia Association (LBDA), the National Institute on Aging (NIA), and the Alzheimer’s Association.

Full Article & Source:
The Common Dementia Condition You’ve Probably Never Heard Of

See Also:
The Con Game - A Failure of Trust

THIS Is Really When Old Age Begins

by  Martha T.S. Laham

A 95-year-old Finnish woman may have set the record for the world's oldest woman to complete a bungee jump, according to Daily Mail. Magit Tall, who walks with the assistance of a cane, took a nearly 500-foot plunge, with the aid of a tandem jumper. She said that she wanted to make the jump before she died. Tall's feat is impressive for a person of any age, let alone a nonagenarian.

Let's take a look at what it means to age in a society that has mixed views on aging.

When Does Old Age Start? 

At age 68, according a Pew Research Center's Social & Demographic Trends survey.

The survey also found that you're really as old as you feel. Sixty percent of adults aged 65 and over said they feel younger than their actual age, 32 percent said they feel their exact age, and 3 percent said they feel older than their age.

Perceptions of the onset of old age varied widely according to the respondent's age. People under 30 believe that old age strikes before the average person turns 60, whereas middle-aged respondents said that old age begins at 70 and adults aged 65 or older put the threshold closer to 74.

Gender made a difference in the findings too. On average, women said that a person becomes old at age 70, whereas men said that the magic number is closer to 66 years of age.

Ageism Hurts 

Princeton University researchers have explored the graying of the population as well as intergenerational tensions in the United States. In seeking explanations for ageism, or age discrimination, the researchers examined prescriptive ageist prejudices, which are beliefs about how older adults differ from others. For example, when older adults do not conform to these beliefs, they are punished by people who discriminate against them.

A surprising finding on ageism is that it can physically injure the elderly. One study found that people who held negative stereotypes toward aging were far more likely to experience heart attacks or strokes (25 percent), as compared to people who did not share these views (13 percent).

Two theories could explain this phenomenon. First, negative expectations can become "self-fulfilling prophecies." In other words, when an older person believes that older people are vital and vibrant, he or she is more apt to take care of him -- or herself. In contrast, when an older person believes that aging equates to sickness and infirmity, he or she may subconsciously become sick and infirm.

Second, genetics may play a role in people's perceptions of aging. For example, people who witnessed their parents age gracefully may have inherited good genes and also developed healthy attitudes and habits.

Baby Boomers Could Redefine What It Means to Grow Old
 
According to an NBC News report, whether ageism will become better or worse as more Boomers hit old age is unclear. To highlight that aging doesn't mean crippling old age, the report shared the story of a 74-year-old Duke University professor who has written several books on aging. The professor said, "One can say unequivocally that older people are getting smarter, richer and healthier as time goes on."

The professor is living proof that aging doesn't mean sitting in a rocking chair on a porch; he skydives, whitewater rafts, cycles, and gets tattoos. "What makes me mad is how aging, in our language and culture, is equated with deterioration and impairment. I don't know how we're going to root that out, except by making people more aware of it," he said.

60 Is the New 40

The frontiers of aging are not all gloom and doom. After all, 60 is the new 40! Take a look at older female role models: plucky actress, director, producer, and screenwriter Diane Keaton; age-defying celebrity, activist, former fitness guru, and W Magazine cover star, at age 77, Jane Fonda; actress and activist Susan Sarandon; and iconic international beauty Sophia Loren.

According to a columnist for The Seattle Times, Liz Taylor, "most of us age accidentally." Taylor recommends that we embrace aging. She also thinks we should drop euphemisms for aging, such as "old," "seniors," "elders," and "older." She adds that Boomers, many of whom are now seniors, do not respond well to these terms.

Shattering Old Stereotypes to Court the Mature Market
 
Today's so-called "mature market" flouts conventional stereotypes. After all, the image of a frail, grumpy elder is passé. Just take a look at pharmaceutical advertisements aimed at the mature market. While the ads focus on common ailments related to aging, such as arthritis, the people shown in the ads are vital, active, and engaged.

Some companies are reformulating their marketing strategies to attract older consumers. In Ameriprise Financial's "Dreams Don't Retire" commercial, the late iconic actor Dennis Hopper dispels conventional attitudes toward retirement. Hopper says, "Your generation is definitely not headed for Bingo night." The ad then talks about the Ameriprise Dream Book that offers a financial strategy to make retirement dreams come true.

Other companies are using cognitive age, or subjective age, and not chronological age in the development of their marketing strategies. Consider the American Association of Retired Persons (AARP). If you've turned 50, the AARP has probably already sent you a direct mail package aimed at getting you to join. The organization tries to appeal to a wide audience, which presents an interesting challenge: communication messages intended for 50-somethings won't resonate with 80-somethings and vice versa. So the AARP developed ads that feature older adults at various life stages and that explain how the AARP's lifestyle-oriented information and services fit into their lives.

To avoid ageism in marketing, some companies address consumer lifestyles. Do you remember the Taco Bell Super Bowl commercial, "Viva Young"? In this fun ad, a pack of rebellious elders sneaks out of their retirement home to experience a night out on the town. They play pranks, go clubbing, make out, get tattooed, and, of course, stop for Taco Bell. The ad demonstrates that you're never too old to stir things up.

Mark Twain said, "Age is an issue of mind over matter. If you don't mind, it doesn't matter." Anyone for bungee jumping?

Full Article & Source:
THIS Is Really When Old Age Begins

How the Daughter of One of America's Most Beloved Actors and Others Are Calling for Change

by  Martha T.S. Laham

The Asbury Park Press Investigations Team ran a shocking four-part series exploring guardianship abuse. "Betrayal of Trust: Stealing From Seniors" features the story of a New Jersey elder law attorney and court-appointed guardian who stole millions of dollars from over 16 wards under her supervision, including seniors in their 80s and 90s.

The court-appointed guardian threw some elderly wards into nursing homes and sold the wards' homes. She even changed their wills to financially benefit her at the time of the wards' deaths, according to the article.

If you think that this case is rare, think again.

Cui bono, or To Whose Benefit?

In the second blog post of the series, we learned that managing the incapacitated person's estate for the benefit of him or her is a major responsibility of the conservator, also known as the guardian.
Yet localized studies on conservatorship and guardianship proceedings found "little benefit to the incapacitated persons" but instead suggested that many petitions were filed for "the benefit of third persons," according to a report titled "Wards of the State: A National Study on Public Guardianships."

Court-Appointed Protectors Often Overstep Their Authority 
 
Conservators and guardians are often given overbroad authority over conservatees' and wards' lives. Stories of conservatees and wards being isolated or imprisoned by court-appointed protectors are far too common.

Catherine Falk, the daughter of the late Peter Falk, fought for her right to visit her father after a California Probate Court granted a conservatorship over her father by appointing his then-wife as Mr. Falk's conservator.

Catherine Falk founded the Catherine Falk Organization which is not a fundraising foundation nor takes any donations whatsoever; however, the organization advances and advocates wards rights visitation legislation nationwide. Falk and her former probate attorney from 2009, drafted the Peter Falk Bill completed in 2011 that was aimed at protecting, preserving and respecting the right of all adult children to visit an ailing or incapacitated parent who is either under power of attorney or under guardianship.

"When I first embarked upon the visitation legislation idea, I realized along my journey and crusade that my lens broadened with the realization that visitation legislation must encompass all wards, non wards in or out of guardianship or under POA as well as realizing the silent epidemic of guardianship abuses that are not just with the aging population but among spouses and siblings in guardianship situations." Falk also investigates elder abuse cases and advocates for victims experiencing their most treasured freedoms that are being violated by offering wonderful resources and support to those in need of help.

"My ultimate goal is to have model visitation legislation in every state that emphasizes wards rights legislation, not just parental visitation with an adult child because isolation happens among all family members including siblings, spouses, aging parents etc...that the legislation will empower wards by safeguarding their most fundamental and constitutional innate rights while maintaining personal autonomy. An ideal piece of legislation should encompass both," she added.

Poor Court Oversight Is an Open Invitation to Guardian Abuse
 
As guardianship abuse has gained national attention, the public wants to know "Who's guarding the guardians?"

The U.S. Government Accountability Office (GAO) issued a report titled "Guardianships: Cases of Financial Exploitation, Neglect, and Abuse of Seniors" that explored the widespread allegations of elder mistreatment by guardians.

In one case, a guardian embezzled over $640,000 from an 87-year-old Alzheimer's patient. The guardian, a former taxi cab driver, spent the stolen funds on things like a Hummer and exotic dancers. When county employees caught wind of the guardian's misdeeds, they discovered that the victim, who was wearing nothing more than an old knit shirt and a diaper, was living in the filthy basement of the guardian's home.

Guardianships Can Violate People's Civil Rights

The Associated Press published a series entitled "Guardians of the Elderly: An Ailing System" that found the guardianship system is "a dangerously burdened and troubled system that regularly puts elderly lives in the hands of others with little or no evidence of necessity, then fails to guard against abuse, theft, and neglect."

Court-appointed attorneys are assigned to represent the rights and wishes of conservatees (clients) but often fail them. According to Linda Kincaid, MPH, of the Coalition for Elder and Dependent Adult Rights (CEDAR):

"Unscrupulous court-appointed attorneys will sometimes oppose their client's wishes, civil rights, and medical needs. Each time a family petitions the court to protect a loved one, the court-appointed attorney can generate billable hours by opposing the families' requests. Those billable hours are then charged to the estate of the conservatee. Substantial estates are depleted by charges from court-appointed attorneys."

"A Broken System" That Needs to Be Fixed

Los Angeles Times ran a series of articles on conservatorship, calling it a "broken system." Situations were brought to light in which "judges frequently overlooked incompetence, neglect and outright theft" committed by conservators, the The Times reported.

Many conservators abused their authority over frail elders by "ignoring their needs and isolating them from loved ones," according to one Times article.

Instances of predatory practices by professional conservators--who exploited the elderly and stripped them of their possessions by manipulating the legal system--surfaced. Other shady conservators drained elders' estates or chewed up seniors' estates by charging outrageous fees.

Watchdog Group Blows the Whistle on Abusive Guardians 

National Association to Stop Guardian Abuse (NASGA) is a longstanding organization that posts, blogs, tweets, and reports on guardianship abuse and rigorously advocates for guardianship reform.
The NASGA calls the guardianship system "a growing menace which feeds on greed." It criticizes the judicial system for its complicity in usurping people's liberties and property. According to Elaine Renoire, president of NASGA:

"It is an appalling, yet accepted practice, for conservatorships to consume the very estates the proceedings are supposed to be protecting. Millionaires who could well afford the cost of their care though end of life, are "protected" into indigence - much to their embarrassment - and then placed on Medicaid at taxpayer expense. Because it's so easy to guardianize a person and because most courts aren't monitoring or holding bad guardians accountable, there is nowhere for wards or their families to go for help. The system becomes a menace because opportunists exploit loopholes and get rich at the expense and detriment of the very people they have been court-appointed to protect."

Full Article & Source:
How the Daughter of One of America's Most Beloved Actors and Others Are Calling for Change

See Also:
Conservatorship Conundrum: Court Process That Can 'Unperson' You Within Minutes

Conservatorship Conundrum: You Can Be Reduced to the Status of an Infant With as Few Rights as a Felon

Martha Laham is also the author of the book, "The Con Game - A Failure of Trust

Conservatorship Conundrum: You Can Be Reduced to the Status of an Infant With as Few Rights as a Felon

by  Martha T.S. Laham 

In the first blog post of the "Conservatorship Conundrum" series, we learned about a conservatorship, also called a guardianship. Next, let's look at "who" does "what" in a conservatorship and how a conservatorship is formed.

What Is a Conservator?
 
Two types of probate conservators can be appointed. A conservator of the person is responsible for handling the conservatee's health care and other basic needs, while a conservator of the estate is responsible for handling the conservatee's financial matters.

The needs of the conservatee will determine if both a conservator of the person and a conservator of the estate are needed.

Who Can Be a Conservator?

If the proposed conservatee isn't able to nominate a person, the court will follow a list of preferences established by law (in order of preference from first to last): a spouse or domestic partner, an adult child, a parent, a sibling, a public guardian, or others the law approves.

If none of them wishes to be the conservator, a professional conservator who charges fees for services can be hired.

If no one files a petition, the public guardian will typically act as conservator and be legally responsible for making all decisions for the incapacitated person.

"Around 95 percent of conservators play dual roles of conservator of the person and conservator of the estate, while about 5 percent are different people or private or professional conservators," says Kirk McIntosh, a Costa Mesa, California-based probate and estate planning attorney.

Is Special Training Required to Become a Conservator?

You'd think a conservator would need special qualifications or specialized knowledge in accounting, law, or social work to become a probate conservator. Not true--pretty much anybody may qualify to become a conservator. In most states, the one prerequisite is that you're mentally competent.

What Are the Steps Involved in the Conservatorship Court Process?

Whenever you see court and process in the same sentence, you know you've gotten yourself into a situation that could be lengthy, costly, and possibly ugly. Let's run through a typical case in the California courts.

1. The Situation.
Say a relative feels that you're unable to care for yourself and fears for your personal health and welfare. Here, your relative will play the role of the proposed conservator, and you will be the proposed conservatee.

If your relative wishes to be conservator over your person, he or she must prove to the court that you're unable to properly provide for your basic needs, such as food, clothing, and shelter.

If your relative wishes to be conservator over your estate, he or she must prove that you're "substantially" unable to manage your financial affairs or "resist fraud or undue influence" by providing "clear and convincing evidence" (the "legal burden" or a "burden of persuasion"), such as unpaid bills or self-neglect, as proof to the court that you're unable to manage your affairs.

2. The Petition.
As the petitioner, your relative will file the case in court by completing the Petition of Conservatorship, the proposal to the court to appoint him or her as your conservator.

McIntosh explains, "Proof of need for a conservatorship requires a capacity declaration from a treating doctor." So the proposed conservator must show that a conservatorship is needed because the proposed conservatee is incompetent, which is known as the burden of proof.

Also, the burden of proof that must be met is that the conservatorship is "the least restrictive alternative or the least intrusive option."

3. The Notice.
Your relative (the petitioner) must have you served with the citation and a copy of the petition at least 15 days prior to the hearing. This "notice" must include the basis for the petition, the type of conservatorship being sought, and the ramifications of the conservatorship on your life--in effect, what rights will be denied either partially or wholly to you.

A written notice of hearing on the conservatorship matter must be mailed to your spouse or domestic partner and "second-degree" relatives, such as siblings and other immediate family members.

4. The Interview.
After the petition is filed, a court investigator will be assigned to the case, and court investigator fees will be paid.

The court investigator acts as the judge's eyes and ears by furnishing "neutral information" about the case. He or she will assess your situation, interview you and your family members, explain your rights, inform you of the petition, and review the allegations contained in it, among other things.

The court investigator will file a confidential report for the court, send copies of it to all parties, and make final recommendations to the judge.

5. The Hearing.
At the hearing, the judge will determine if all parties have been notified, whether the conservatorship is warranted, and what types of "special powers" may be granted to your relative if the judge approves the conservatorship.

If you oppose the conservatorship, you can explain why at the hearing. You can also request a jury trial. If the court grants these requests, then nothing else will happen at that time. If not, the judge will either grant or deny the conservatorship.

6. The Appointment.
If the judge grants the petition, an order appointing your relative as your conservator for the conservatorship of your person and/or estate will be filed, and Letters of Conservatorship will be issued to him or her. The Letters will prove that your relative has been appointed as your conservator, show that he or she has the authority to act as your conservator, and spell out the permitted actions your relative is authorized to take that affect your life.

If you have an estate, a surety bond must be filed unless the court has frozen your assets.

Frighteningly, your life may no longer be your own to determine or manage, although that all depends on the rights and powers the judge will allow you to retain.

At the end of the day a conservatorship can reduce you to the status of an infant with as few rights as a felon.

In the next blog post in the series, we'll enter the dark underbelly of the guardianship industry.   (Continue Reading)

Full Article & Source:
Conservatorship Conundrum: You Can Be Reduced to the Status of an Infant With as Few Rights as a Felon