As Cognition Slips, Financial Skills Are Often the First to Go



                
Francis, 84, with his daughter-in-law, Helen Clark. He has mild dementia, and his family says his former wife took advantage of him.                      
WHEN Helen Clark brought her father-in-law, then 83, to the doctor last year, she knew his mind was slowing, but a mental status exam confirmed it. He knew the year, where he lived and the name of the president. But when the doctor asked him to count backward from 100, subtracting seven from each number — 100, 93, 86, 79 — a look of confusion washed over his face.

Studies show that the ability to perform simple math problems, as well as handling financial matters, are typically one of the first set of skills to decline in diseases of the mind, like Alzheimer’s, and Ms. Clark’s father-in-law, who suffered from mild dementia, was no exception. Research has also shown that even cognitively normal people may reach a point where financial decision-making becomes more challenging.

“A person can appear to have their wherewithal cognitively, but not have the ability to understand money in the same way anymore,” said Ms. Clark, a retired registered nurse and family therapist in Cottonwood, Calif.
The issue looms large, particularly as the number of older people continues to rapidly expand: There are 44.7 million people 65 and older, representing 14 percent of the population, according to the most recent census data, but, within 10 years, they will swell to an estimated 66 million. This group collectively holds trillions of dollars in wealth, but are often left to manage their own finances, even as they become increasingly vulnerable. About half of adults in their 80s either have dementia, or at least some cognitive impairment without dementia, researchers said.

“If you can detect emerging financial impairment early, you can also step in early and protect the person,” said Daniel Marson, a neuropsychologist and director of the Alzheimer’s Disease Center at the University of Alabama at Birmingham. “It may be if you step in two months from now, they won’t be in a position to make a poor decision or be exploited a year from now.”

For Ms. Clark’s father-in-law, Francis Taylor, the intervention came too late. At 80 years old, he married a woman 17 years his junior, who, over their three-year union, according to the family, cashed $40,000 in blank checks sent by his credit-card issuer and emptied the contents of his $123,000 annuity, leaving him with little more than a giant tax bill.

Mr. Taylor, a former diesel mechanic and Korean War veteran, gave his wife permission to make two annuity withdrawals over the phone. But his wife, who couldn’t be reached for comment, made 20 more withdrawals on her own by using her husband’s Social Security number and other identifying information, and signing papers to direct money into a joint account, according to documents provided by Ms. Clark. After an internal investigation, MetLife, the annuity provider, concluded that it had followed proper procedures.

Preventing these situations is often difficult. Knowing exactly when to get involved can be fraught, whether you are an adult child or a trusted adviser. There are a series of early warning signs of financial decline, which Dr. Marson identified in a recent study, which is being submitted for publication and was funded by the National Endowment for Financial Education and the National Institute on Aging.


The signs, while perhaps not surprising, are subtle, making them easy to miss: It may become more difficult for people to identify the risks in a particular investment, and they may focus too much on the benefits. Completing various tasks on a financial to-do list may start to take longer, such as preparing bills for the mail. Everyday math may become more laborious or prone to errors, whether that’s figuring out a tip in a restaurant or doing a calculation that requires two steps. Financial concepts, like medical deductibles and minimum balances required in savings accounts, may also become harder to grasp. Naturally, these behaviors should represent a significant change: If a person was never adept with personal finances, this won’t serve as much of an indicator.

Dr. Marson said he identified these warnings signs as part of a study of 138 older adults over time who were initially deemed “cognitively normal” by a panel of four doctors when they joined the study (and after at least one annual follow-up visit). Participants were also timed as they completed financial tasks in a lab. Twenty-three members of the group later received a diagnosis of mild cognitive impairment, but when the researchers went back and looked at the original results of the financial capacity test — when the group members were deemed cognitively normal — there were already subtle signs of slowing and financial decline.

“The group that would later decline already had some emerging signs,” Dr. Marson said, though they weren’t glaring.

While many people continue to handle their finances with ease well into their later years, even people with healthy brains tend to experience cognitive decline. According to one study, which analyzed participants’ propensity to make financial mistakes, a person’s financial decision-making ability peaks at age 53, or, more generally, in their 50s. This is the sweet spot, the paper said, because they have substantial amounts of experience but they have had only modest declines in their ability to solve new problems.

There is a general tendency for our ability to solve new problems — known as fluid intelligence — to slowly decline over time, starting as early as age 20. But this is at least partly offset by our growing experiences and wisdom, known as crystallized intelligence.

David Laibson, an economics professor at Harvard and co-author of the research, said he believed that crystallized intelligence tended to plateau when people reached their 70s. That plateau, accompanied with declining fluid intelligence, might explain why older consumers made more financial mistakes than middle-age ones in his study.

“At that point, vulnerability increases,” Professor Laibson said. “Our nation’s wealth is disproportionately held by older adults, and they are exactly the group, particularly as they reach their 80s and 90s, that are most vulnerable. But our system has the fewest protections for those people.”
He said he wishes all 65-year-olds would start by simplifying their financial lives, reducing the money clutter to just a few mutual funds at a reputable institution.


Then there are the boilerplate tools, including wills, revocable living trusts, durable financial power of attorney, and health care directives. Financial institutions often want their own powers of attorney filled out, so it helps to put them in place before you need them. If ready access to more credit isn’t important, advisers suggested freezing elders’ credit files, so criminals cannot attempt to open accounts in their names. Automate bill payments.

If adult children suspect a parent needs watching over, they can also ask financial institutions to send duplicate statements or notices if a parent misses a long-term care insurance payment, for example. Monitoring can also easily be done from afar with online access to accounts, but that sort of access can be disastrous in the wrong hands. If the person does not have trusted family members or friends, a licensed fiduciary can be a good alternative to monitor accounts, said Carolyn Rosenblatt, an elder lawyer and author who counsels families on aging-related issues.

Another financial adviser asks his clients to assemble what he calls a protective tribe, or a handful of people who are willing to step in and assist if and when the need arises. “The protective tribe is important because senior abuse is often committed by a close relative or trusted professional,” said Jean-Luc Bourdon, a certified public accountant who specializes in financial planning in Santa Barbara, Calif. “A tribe is needed to have checks and balances.”

Many estate planning lawyers and financial planners ask their clients to name a person they can contact if they suspect their cognitive skills may be on the decline. Sometimes called “a letter of diminishing capacity,” the document typically authorizes the adviser to raise the issue with a trusted individual the client names.
124CommentsBob Rall, a financial planner in Merritt Island, Fla., said it came in handy when a widow with modest assets asked if he could send her $50,000 so she could host an 80th birthday party. “I immediately called her daughter, who the client had previously given me the authorization to speak with,” he said. “After a discussion, we decided to send her mom $15,000. She still had a pretty nice party.”

For many families, there isn’t much margin for error. Ms. Clark’s father-in-law still has the equity in his home; she intervened just as his wife was completing the paperwork for a reverse mortgage.

“Although this is tragic for my father-in-law,” Ms. Clark said, “what I am even more concerned about is the lack of accountability when fraud occurs across the board for elders in this position.”


version of this article appears in print on April 25, 2015, on page B4 of the New York edition with the headline: As Cognition Slips, Financial Skills Are Often the First to Go. Order ReprintsToday's Paper|Subscribe 

Teleneurology in Managing Rare Neurologic Diseases


In the United States, approximately 6% to 8% of the population, or 25 million people, have a rare disease.1,2 Currently, more than 6,800 conditions qualify as a rare disease, which, in the United States, is considered to be a condition that affects fewer than 200,000 persons.1,2 Subsequently, such diseases can be difficult to study. Single institutions often have small sample sizes and funding to conduct multicenter studies may be lacking. At a poster session during the American Academy of Neurology (AAN) 67th Annual Meeting, researchers studying progressive multifocal leukoencephalopathy caused by the JC virus, provided insights on how teleneurology might be used to improve rare disease research and the care of patients with rare diseases.1   Rare Disease Report had the opportunity to discuss the study in greater detail with the presenters, Igor J. Koralnik, MD, Division of Neuro-Immunology, Department of Neurology, and the Center for Virology and Vaccine Research, Department of Medicine, Beth Israel Deaconess Medical Center (BIDMC), Harvard Medical School, Boston, MA, and Shruti P. Agnihotri, MD, a former Neuro-Infectious Diseases fellow with Dr. Koralnik at BIDMC, and now at the Division of Neuro-Immunology, Department of Neurology, The University of Alabama at Birmingham.

What is teleneurology?

Teleneurology is a form of telemedicine that uses diverse technologies to provide neurologic consultation from a distance. This might include telephone calls, e-mails, and videoconferencing. We also refer to this as cyberconsults.

What led you to provide teleneurology services? Please also describe your process.

Because we’re involved in clinical and basic research on JCV-associated diseases at BIDMC in Boston, we receive many requests for advice on such cases. We found these requests to be time-consuming, so we came up with a process for handling them more efficiently. During the academic year 2013-2014, our neuroinfectious disease fellow Dr. Agnihotri established contact with the requestor to obtain details, imaging studies, and other potentially useful information. Because we preferred to obtain the pertinent information from patients’ primary healthcare providers, if patients or their families contacted us directly, we asked them to have their treating physician contact us. Then, once all available information was obtained, Dr. Agnihotri discussed the case with Dr. Koralnik, and our recommendations were presented to patients’ treating physicians. Patients deemed to be candidates for our research studies were presented with this option, which led some patients to come to our office for a face-to-face consultation.

What kind of requests did you receive regarding JC virus syndromes and what were your findings?

We received 43 requests between July 2013 and June 2014, of which 19% originated in our home state of Massachusetts, 58% from other US states, and 23% from other countries. Based on the data we received, we identified a JC virus syndrome in 33 patients (77%) and other diseases in 8 patients (19%). We were unable to make a diagnosis in 2 cases due to insufficient data. Of the 33 patients with JC virus syndromes, 11 enrolled in our research studies. Thirteen of the 43 requests were for atypical presentations, with the majority being second opinions and inquiries related to the availability of treatment-based clinical trials.

Does teleneurology pose any challenges?

Yes, teleneurology for rare diseases presents many challenges. Ethical and legal factors require careful consideration when providing medical advice without full and direct assessment of a patient, as malpractice is always a concern. Therefore, we find it prudent to take an approach that serves to guide the referring physician, such as by describing the steps we would take to establish the diagnosis and/or determine management if we were to see a similar presentation in our clinic.

What about benefits?

There are definitely numerous benefits, including the satisfaction of providing assistance that is not available locally, access to an expanded pool of patients for research studies and publications, and grateful patients and families who may further support research through philanthropy.

Do you have a take-home message for healthcare providers with regard to teleneurology, or even telemedicine in general?

Teleneurology is an emerging field that provides considerable promise in furthering research and improving the care of patients with rare neurologic diseases; however, the process needs to be a collaborative one, with the disease expert and referring physician working closely together to reduce the challenges and enhance the benefits, particularly when a rare disease straddles several medical specialties.

References

1. Agnihotri S, Koralnik I. S.O.S. Progressive multifocal leukoencephalopathy: teleneurology for a rare disease. Poster presented at: 67th American Academy of Neurology Annual Meeting; April 18-25, 2015; Washington, DC. 2. Agnihotri S, Koralnik I. Training for a neurology career in a rare disease: the role of cyberconsults. Ann Neurol. 2015;77(5):738-740.
Image "Telecare conference" by Jackhsiao - Own work. Licensed under Public Domain via Wikimedia Commons - https://commons.wikimedia.org/wiki/File:%E8%95%AD%E4%B8%AD%E6%AD%A3%E9%99%A2%E9%95%B7%E9%80%B2%E8%A1%8CTelecare_conference.jpg#/media/File:%E8%95%AD%E4%B8%AD%E6%AD%A3%E9%99%A2%E9%95%B7%E9%80%B2%E8%A1%8CTelecare_conference.jpg

By:  Christina T. Loguidice
Rare Diseas Report

No cure, no 'great treatments' so far for debilitating neurological condition of ataxia, say UAB doctors


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(L-R): Pelham musician and family man John Parnell is an ataxia sufferer (Tamika Moore/tmoore@al.com); Dr. Harrison Walker, a neurologist at The University of Alabama at Birmingham, diagnosed Parnell in 2013; Dr. Talene Yacoubian founded the UAB Ataxia Clinic in 2014 2013 (UAB photos).
John Parnell of Pelham, 34, plays guitar, bass and drums, has a recording studio in his house and has enjoyed a nearly lifelong love of music. "Making music in whatever form makes me happy," Parnell told AL.com in March.

But Parnell's days of playing instruments could be slowly coming to an end. He suffers from a degenerative neurological condition called ataxia that can gradually rob people of the use of their arms and legs. 

"There's a part of your brain that controls motor functions (and) it attacks that part," Parnell said. "It's like being drunk but I'm not drinking." 

"A common and debilitating symptom of ataxia is imbalance while walking, incoordination using the arms and hands during daily activities and disturbances of speech," Dr. Harrison Walker of The University of Alabama at Birmingham (UAB) Department of Neurology, who diagnosed Parnell with ataxia in 2013, told AL.com in an email.  

To find out more about ataxia -- its causes, effects, diagnosis, emotional and psychological impact, and possible treatments -- AL.com turned to Walker and Dr. Talene Yacoubian, who founded the UAB Ataxia Clinic in 2014 

What is ataxia?

As Parnell said, ataxia is a result of an attack on the brain. "Ataxia is usually due to damage or dysfunction of the cerebellum, which is found in the back of the brain," Yacoubian said in an email. 

Ataxia -- the name comes from the Greek word, "ataxis," which means "without order" or "incoordination" -- is a broad clinical term that covers a wide variety of disorders.

In fact, ataxia is not classified as a separate disease or disorder, according to the UAB neurologists.  "Ataxia is not a single disorder but a clinical description of abnormalities in coordination," Yacoubian said. "Cerebellar ataxia is a syndrome with many causes (and) is not related to a single disease," Walker said.

Many varieties, tough to diagnose

There are many different types of ataxia, and this can complicate efforts to properly diagnose it.  There are "hundreds of different causes" for cerebellar ataxia, according to Yacoubian, who said that some causes are "genetic (inherited)" and many more are "sporadic or acquired." 

Those "sporadic" causes can include stroke, multiple sclerosis, vitamin deficiencies, alcohol abuse, medication toxicities, autoimmune disorders, tumors and infections. 

Genetic causes for ataxia are "rarer," according to Yacoubian. "There are perhaps 100-200 different genes that have been associated with ataxias, but the list of gene mutations that can cause ataxia is growing rapidly due to technological advances in gene sequencing." 

Parnell's doctors at UAB are still trying to make a full and final diagnosis. "They know it's a form of genetic ataxia, but they haven't pinpointed the type I have," he said. 

Parnell takes some comfort in the fact that the ataxia will likely not kill him or impair his cognitive abilities, but he and his wife, Erin, can't be sure exactly how far the symptoms might progress. "I might end up in a wheelchair one day, but I might still have use of my arms," he said. "I might end up in a wheelchair and not have use of my arms."  

It is not uncommon for patients to face this sort of uncertainty regarding ataxia, according to Yacoubian. "Because of the huge number of possible causes of ataxia, it can take some time to determine the cause of ataxia for a patient, and sometimes we are not successful at finding the cause," she said. 

In some patients with genetic forms of ataxia, "the cause is unclear, even after extensive diagnostic testing," Walker said. 

Some non-genetic forms of ataxia are a little easier to diagnose, according to Walker.  "If the ataxia is from a structural lesion... the etiology can be determined fairly readily with imaging," he said, citing such examples as tumors and strokes. 

Early warning signs of ataxia include "Incoordination or imbalance in the legs, incoordination of the arms/hands (and) abnormal speech," Walker said. "The signs can be subtle at their onset." 

No cure, no 'great treatments'

There are, at present, no "great treatments" and no cure for ataxia, according to Walker.

"Because of the wide range of causes (of ataxia), a specific diagnosis is often difficult to determine for patients -- limiting their options for treatment," according to the Ataxia Clinic web page. 

However, "depending on the cause" of a patient's ataxia, "medications sometimes can be helpful for patients," Walker said. 

Parnell said there are, for example, drugs that can make his legs feel less heavy. However, the medicines have unpleasant side effects, such as grogginess. "I would rather suck it up and just deal with it than have to ruin my liver more than I already have," he said. 

Some days are better than others for Parnell, who already has a hard time walking. "On bad days it affects my voice (and) I talk with a slur," he said. "It hasn't affected my arms so much. I have had points where they are weak. I have points where I have what I call the shakes, the jitters." 

Emotional hardship

Ataxia comes with a significant emotional and psychological toll for the sufferers and their loved ones. In Parnell's case, that means Erin and their two-year-old daughter, Nora. 

Parnell's diagnosis -- and what he and Erin subsequently read on the Internet about the devastating effects of various forms of ataxia -- hit him hard. "Man, I won't sit here and lie," he said. "I cried." 

Because ataxia lacks a cure or effective treatments, patients "often progress and have severe disabilities that limit their mobility, their ability to work, their ability to care for family," Yacoubian said. 

"Understandably, patients with ataxia are under significant stress and often suffer from depression and anxiety," she said. "Some of the ataxias can also cause cognitive impairment that adds to the disability." 

Family members and caregivers "are also under a lot of strain and can suffer from burnout," Yacoubian said. 

Erin calls John "the very best husband and father" and said that she is up for the challenge. "I will take care of him," she said. "It is a wedding vow I will never take lightly." 

'Not an uncommon symptom'

An estimated 150,000 Americans are affected by genetic or sporadic ataxia, according to the National Ataxia Foundation.

While it is "very difficult" to estimate the number of people in Birmingham or Alabama who may have ataxia, according to Walker, he said that "it is not an uncommon neurological symptom, especially if one were to pool all of the different kinds of ataxia -- degenerative, genetic, brain tumors, strokes, multiple sclerosis -- together." 

The Ataxia Clinic is held once a month and typically sees about eight patients per clinic, according to Yacoubian. "But the clinic slots have filled up far into the future," she said. "We will probably need to hold the clinic more frequently." 

Lots of studies

Meanwhile, ataxia research is being conducted at UAB and many other places, according to Yacoubian, who recently became a member of the Clinical Research Consortium for Spinocerebellar Ataxias, a national consortium of researchers. 

Marek Napierala, a faculty member in the UAB Department of Biochemistry and Molecular Genetics, is conducting research into Friedreich's ataxia and other genetic forms, according to Yacoubian. 

There are other active studies in the Europe and the United States. Many studies are funded by the National Ataxia Foundation

'I had no idea what it was'

Parnell -- who has vowed to record and release as music as he can while he can, most of it on his own label -- wants to use his efforts to raise public awareness of ataxia. 

"The goal is to bring attention to this disease that I have and that millions have, because, to be quite honest, it's not a disease that most people know about it," he said. "I had no idea what it was until I was forced to look in the mirror and deal with it."


By Jesse Chambers | jchambers@al.com The Birmingham News 
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on April 14, 2015 at  5:14 PM, updated April 14, 2015 at  5:23 PM

                









        





Carly's Law patients start receiving marijuana-derived CBD oil to treat seizures

Alabama's first two patients in the state-approved Carly's Law study conducted by the University of Alabama at Birmingham last week began taking an experimental marijuana-derived medication for treating severe seizures.

A pediatric patient received the first dosage of cannabidiol, also known as CBD, on April 1 and the first adult patient started the treatment last Thursday through the study, said Dr. Jerzy P. Szaflarski, a neurology professor and director of the UAB Epilepsy Center.

"Both of these patients have what we call catastrophic epilepsy, which is a very difficult-to-control epilepsy," Szaflarski said in an interview, noting the patients each have at least 100 seizures a month and both have "failed almost all treatments including brain surgeries."

Szaflarski, who is the principal investigator of the adult study, said another patient could start receiving the treatment on Thursday and at least another two could begin next week. "If all goes well, by the end of the month we will have at least 10 patients in the study," he said.

With the medication, officials hope to see "some improvement in both seizure control and quality of life" for the patients, he said.

UAB's study -- one of the largest in the nation -- will examine the effects of the CBD medication delivered in oil form orally to patients. Although the medication comes from marijuana, it does not create the intoxicating properties associated with the drug.

Authorized by the Alabama Legislature last year, the study known as Carly's Law gets its name from the 4-year-old daughter of the Birmingham area's Dustin and Amy Chandler. The Chandlers have been pushing to allow the study that could potentially benefit children and adults suffering from seizures, including their daughter who has a rare genetic disorder called CDKL5.

"To me, it's a relief to know that we've finally begun and all the hard work is literally paying off for these patients," Dustin Chandler said in an interview today, noting his daughter is not one of the patients already accepted into the study.

"It's a relief knowing finally these people who have been suffering and bound to such a life -- they can't live the life they want because of epilepsy and debilitating seizures -- can finally get some relief. We all understand from day one it's not going to work for everybody ... but just to know it's now being dispensed and prescribed, it's just a relief," Chandler said.

The medication's delivery is happening after UAB received approval from the U.S. Food and Drug Administration on March 2 that allowed the institution to officially begin the study, which will include 50 children and 50 adults.

Szaflarski said medical officials associated with the Carly's Law studies have been contacting patients as their completed application packets arrive and undergo review. "We had initially at least around 400 phone calls from people who are interested" with more than 350 packets mailed to prospective patients, he said.

UAB officials have received around 90 packets that are being reviewed. "We already have enough patients to keep us busy for a while," he said, noting that among those received, "approximately 60 to 70 percent are pediatric and about 30 to 40 percent are adults."

Patients take the CBD oil twice a day while UAB officials monitor them for signs of progress. Patients come in for visits every two weeks, at which time doctors can prescribe an increased dosage.

Szaflarski said the study will monitor patients using CBD for side effects as well as interactions with other medications. "We will give patients one more opportunity, one more option to have their seizures under better control and in the end hopefully a better quality of life," he said.

GW Pharmaceuticals is providing the medication free of cost for the 100 patients in the study. UAB could approach the company to request more medication if the demand is greater.

"We don't anticipate any issues for the next few months," Szaflarski said about reaching the study's cap. "We do have an open option at the end of enrollment that we can go back to the company and ask them if they are willing to supply more. ... If it is clear we will exceed the number for 100, we will definitely go

Compliments of:
By Martin J. Reed | mreed@al.com The Birmingham News | Follow on Twitter on April 08, 2015 at 4:42 PM, updated April 08, 2015 at  4:50 PM 



                


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