“Driving Safety with Parkinson’s and Parkinson’s Dementia”

This will be of interest to those concerned about driving safety.

There’s a good article on the topic of driving safety in the July 2008
Parkinson’s Resource Organization newsletter. See:

Editor’s Note: Article is no longer available from source


Driving Safety with Parkinson’s and Parkinson’s Dementia
Parkinson’s Resource Organization
July 2008
(article is on pages 1 and 7)

The full article is copied below.




Driving Safety with Parkinson’s and Parkinson’s Dementia
Parkinson’s Resource Organization
July 2008

Driving is a complex activity that requires quick thinking
and reactions, as well as good perceptual abilities. For
the person with Parkinson’s and/or dementia, driving
becomes a safety issue. While he or she may not recognize
that changes in cognitive and sensory skills impair driving
abilities, you and other family members will need to be firm
in your efforts to prevent the person from driving when the
time comes.

That said, it’s important to consider the person’s feelings
and perceived loss of independence when explaining why he
or she can no longer drive. Helping the person with dementia
make the decision to stop driving — before you have to force
him or her to stop — can help maintain a positive sense of

How dangerous is it?
Previous studies demonstrate that poor driving performance
increases with increased dementia severity. However, not all
people with Parkinson’s are unsafe drivers at a given point
in time. What’s more, drivers with dementia are not in more
crashes than non-demented elderly drivers, suggesting that
dementia should not be the sole justification for suspending
driving privileges. Instead, an on-the-road driving test, or
other functional test, is the best way to assess driving skills
in dementia.

Some state agencies have special drive tests to determine
how well a person sees, judges distance, and responds to
traffic. Ask the person who administers the test to explain
the results to you and the person with dementia. If your state
does not offer special testing, private assessments (generally
fee-for-service) may be available. Your local DMV, Highway
Patrol or even Senior Centers may be able to provide a list of
these programs.

How do you know when the time has come?
There are also a number of steps you can take to assess the
person’s ability to drive.

1) Look for signs of unsafe driving
Signs of unsafe driving include:
• Forgetting how to locate familiar places,
• Failing to observe traffic signs,
• Making slow or poor decisions in traffic,
• Driving at an inappropriate speed,
• Becoming angry or confused while driving.
Keep a written record of your observations to share with the
person, family members and health care professionals.

2) Learn about your state’s driving regulations
In some states, such as California, the physician must
report a diagnosis of Parkinson’s to the health department,
which then reports it to the department of motor vehicles.
That agency then may revoke the person’s license. Check
with your local DMV for information on driving regulations in your

Tips to limit driving
Once it’s clear the person with dementia can no longer drive safely,
you’ll need to get him or her out from behind the wheel as soon as
possible. If possible, involve the person with dementia in the decision
to stop driving. Explain your concerns about his or her unsafe driving,
giving specific examples, and ask the person to voluntarily stop driving.
Assure the person that a ride will be available if he or she needs to go

Other tips to discourage driving include:

• Transition driving responsibilities to others. Tell the person you can
drive, arrange for someone else to drive, or arrange a taxi service or
special transportation services for older adults.

• Have prescription medicines, groceries or meals delivered.

• Solicit the support of others. Ask your physician to advise the person
with dementia not to drive. Involving your physician in a family
conference on driving is probably more effective than trying by
yourself to persuade the person not to drive. Ask the physician to
write a letter stating that the person with Parkinson’s must not drive.
Or ask the physician to write a prescription that says, “No driving.”
You can then use the letter or prescription to tell your family member
what’s been decided.

• Experiment with ways to distract the person from driving. Mention
that someone else should drive because you’re taking a new route,
because driving conditions are dangerous, or because he or she is
tired and needs to rest. Tell the person he or she deserves a chance
to sit back and enjoy the scenery. You may also want to arrange for
another person to sit in the back seat to distract the person while
someone else drives. If the disease is in an advanced stage, or there
is a history of anger and aggressiveness, it’s best not to drive alone
with the person.

In the later stages, when the person is no longer able to make decisions,
substitute his or her driver’s license with a photo identification card.
Take no chances. Don’t assume that taking away a driver’s license will
discourage driving. The person may not remember that he or she no
longer has a license to drive or even that he or she needs a license.

What if the person won’t stop?
If the person insists on driving, take these steps as a last resort:

• Control access to the car keys. Designate one person who will do all
the driving and give that individual exclusive access to the car keys.

• Disable the car. Remove the distributor cap or the battery or starter
wire. Ask a mechanic to install a “kill wire” that will prevent the car
>from starting unless the switch is thrown. Or give the person a set of
keys that looks like his or her old set, but that don’t work to start the

• Consider selling the car. By selling the car, you may be able to save
enough in insurance premiums, gas and oil, and maintenance costs to
pay for public transportation, including taxicab rides.

In some states, it might be best to alert the department of motor
vehicles. Write a letter directly to the authority and express your
concerns, or request that the person’s license be revoked. The letter
should state that “(the person’s full name) is a hazard on the road,”
and offer the reason (Parkinson’s disease or Dementia). The state may
require a statement form your physician that certifies the person is no
longer able to drive.

“Doctors Say Medication Is Overused in Dementia”

Here’s an article from tomorrow’s (6/24/08) New York Times on the overuse of antipsychotics in dementia. The antipsychotics mentioned here are Risperdal, Seroquel, Zyprexa, and Haldol. The names of two dementia medications are incorrect below; the article should say Exelon and Namenda.


June 24, 2008
Doctors Say Medication Is Overused in Dementia

Ramona Lamascola thought she was losing her 88-year-old mother to dementia. Instead, she was losing her to overmedication.

Last fall her mother, Theresa Lamascola, of the Bronx, suffering from anxiety and confusion, was put on the antipsychotic drug Risperdal. When she had trouble walking, her daughter took her to another doctor — the younger Ms. Lamascola’s own physician — who found that she had unrecognized hypothyroidism, a disorder that can contribute to dementia.

Theresa Lamascola was moved to a nursing home to get these problems under control. But things only got worse. “My mother was screaming and out of it, drooling on herself and twitching,” said Ms. Lamascola, a pediatric nurse. The psychiatrist in the nursing home stopped the Risperdal, which can cause twitching and vocal tics, and prescribed a sedative and two other antipsychotics.

“I knew the drugs were doing this to her,” her daughter said. “I told him to stop the medications and stay away from Mom.”

Not until yet another doctor took Mrs. Lamascola off the drugs did she begin to improve.

The use of antipsychotic drugs to tamp down the agitation, combative behavior and outbursts of dementia patients has soared, especially in the elderly. Sales of newer antipsychotics like Risperdal, Seroquel and Zyprexa totaled $13.1 billion in 2007, up from $4 billion in 2000, according to IMS Health, a health care information company.

Part of this increase can be traced to prescriptions in nursing homes. Researchers estimate that about a third of all nursing home patients have been given antipsychotic drugs.

The increases continue despite a drumbeat of bad publicity. A 2006 study of Alzheimer’s patients found that for most patients, antipsychotics provided no significant improvement over placebos in treating aggression and delusions.

In 2005, the Food and Drug Administration ordered that the newer drugs carry a “black box” label warning of an increased risk of death. Last week, the F.D.A. required a similar warning on the labels of older antipsychotics.

The agency has not approved marketing of these drugs for older people with dementia, but they are commonly prescribed to these patients “off label.” Several states are suing the top sellers of antipsychotics on charges of false and misleading marketing.

Ambre Morley, a spokeswoman for Janssen, the division of Johnson & Johnson that manufactures Risperdal, would not comment on the suits, but said: “As with any medication, the prescribing of a medication is up to a physician. We only promote our products for F.D.A.-approved indications.”

Nevertheless, many doctors say misuse of the drugs is widespread. “These antipsychotics can be overused and abused,” said Dr. Johnny Matson, a professor of psychology at Louisiana State University. “And there’s a lot of abuse going on in a lot of these places.”

Dr. William D. Smucker, a member of the American Medical Directors Association, a group of health professionals who work in nursing homes, agreed. Though the group encourages doctors to conduct a thorough assessment and prescribe antipsychotics only as a last resort, he said, “Many physicians are absent without leave in the nursing home and don’t take an active role in the assessment of the patient.”

Some nursing homes are trying a different approach, so-called environmental intervention. The strategies include reducing boredom, providing intellectual and physical stimulation, exercise, calming music, bringing in pets for therapy and improving how the staff approaches and talks to dementia patients.

At the Margaret Teitz Nursing and Rehabilitation Center in Queens, social workers do life reviews of patients to understand their interests, lifestyle and former occupations.

“I had a patient who used to be in fashion,” said Nancy Goldwasser, the director of social services. “So we got her fabric samples. And she’d sit and look through the books, touch the fabric, and it would calm her.”

But such approaches are time consuming, they do not help all patients, they can be prohibitively expensive and they will be more difficult to provide as Alzheimer’s continues to increase.

“Our health care system isn’t set up to address the mental, emotional and behavioral problems of the elderly,” said Dr. Gary S. Moak, president of the American Association for Geriatric Psychiatry.

Nursing homes are short staffed, and insurers do not generally pay for the attentive medical care and hands-on psychosocial therapy that advocates recommend. It is much easier to use sedatives and antipsychotics, despite their side effects.

The first generation of antipsychotics, like Haldol, carry a significant risk of repetitive movement disorders and sedation. Second-generation antipsychotics, also called atypicals, are more commonly prescribed because the risk of movement disorders is lower. But they, too, can cause sedation, and they contribute to weight gain and diabetes.

Used correctly, the drugs do have a role in treating some seriously demented patients, who may be incapacitated by paranoia or are self-destructive or violent. Taking the edge off the behavior can keep them safe and living at home, rather than in a nursing home.

If patients are prescribed an antipsychotic, it should be a very low dose for the shortest period necessary, said Dr. Dillip V. Jeste, a professor of psychiatry and neuroscience at the University of California, San Diego.

It may take a few weeks or months to control behavior. In many cases, the patient can then be weaned off of the drugs or kept at a very low dose.

Some experts say another group of medications — antidementia drugs like Aricept, Exalon and Menamda — are underused. Research shows that 10 to 20 percent of Alzheimer’s patients had noticeable positive responses to the drugs, and 40 percent more showed some cognitive improvement, even if it was not noticeable to an observer.

“Sometimes, it’s enough to take the edge off the behavioral problems, so the family and patient can live with it and you don’t expose people to much risk,” said Dr. Gary J. Kennedy, director of geriatric psychiatry at the Montefiore Medical Center in the Bronx.

Other experts cite a lack of research backing these drugs for behavioral problems.

If patients begin showing behavioral symptoms of dementia, doctors said, they should have complete medical and psychiatric workups first, especially if symptoms develop suddenly.

“Just because someone is 95 does not mean one should not do a workup, especially if she’s been healthy,” Dr. Kennedy said.

Common causes of the symptoms include ministrokes, reparable brain hemorrhage from a mild bump on the head, hypothyroidism, dehydration, malnourishment, depression and sleep disorders.

Some doctors point out that simply paying attention to a nursing home patient can ease dementia symptoms. They note that in randomized trials of antipsychotic drugs for dementia, 30 to 60 percent of patients in the placebo groups improved.

“That’s mind boggling,” Dr. Jeste said. “These severely demented patients are not responding to the power of suggestion. They’re responding to the attention they get when they participate in a clinical trial.

“They receive both T.L.C. and good general medical and humane care, which they did not receive until now. That’s a sad commentary on the way we treat dementia patients.”

To family members looking at a nursing home for an aging parent, experts recommend seeking out homes with low staff turnover, a high ratio of staff members to patients, and programs with psychosocial components.

The Medicare Web site has basic information on individual homes at www.medicare.gov/NHcompare. The National Citizens’ Coalition for Nursing Home Reform, at www.nccnhr.org, offers a consumer guide to choosing a nursing home.

If medications are necessary, a family member should communicate with the prescribing doctor, learn the goal of each medication and be involved in making the decision.

Dr. Moak, of the psychiatry association, emphasized seeking out the doctor. Family members, he said, “often speak through the nursing staff, and that’s a huge mistake.”

Family members who are not convinced that a relative is receiving the best care should get a second opinion, as Ramona Lamascola did.

The physician she consulted, Dr. Kennedy of Montefiore, stopped her mother’s antipsychotics and sedatives and prescribed Aricept.

“It’s not clear whether it was getting her hypothyroid and other medical issues finally under control or getting rid of the offending medications,” he said. “But she had a miraculous turnaround.”

Theresa Lamascola still has dementia, but she went from confinement in a wheelchair — unable to sit still and screaming out in fear — to being able to walk with help, sit peacefully, have some memory and ability to communicate, understand subtleties of conversations and even make jokes.

Or, as her daughter put it, “I got my mother back.”

“Doctors Say Medication Is Overused in Dementia” (NYT 6-24-08)

Here’s a link to an article from tomorrow’s (6/24/08) New York Times on the overuse of antipsychotics in dementia. The antipsychotics mentioned here are Risperdal, Seroquel, Zyprexa, and Haldol. The names of two dementia medications are incorrect below; the article should say Exelon and Namenda:


June 24, 2008
Doctors Say Medication Is Overused in Dementia
New York Times
By Laurie Tarkan
June 24, 2008

“Detecting Hospital Delirium” (Johns Hopkins Health Alert)

Johns Hopkins Medicine publishes “Health Alerts” on a variety of topics. (See www.johnshopkinshealthalerts.com) Here’s a “Health Alert” on hospital delirium published last week.




Detecting Hospital Delirium
June 16, 2008
By Johns Hopkins Health Alerts

The connection between delirium and dementia is still not fully understood, although doctors have known for quite some time that people who experience an episode of delirium and recover are more likely to go on to develop dementia. In this Health Alert, Dr. Michele Bellantoni talks about the signs of hospital delirium.

Delirium is a common and sometimes serious medical condition that often strikes older people during hospital stays. Though delirium associated with dementia, delirium is temporary and the majority of people who get it improve in a matter of days. Michele Bellantoni, M.D., Associate Professor of Medicine and Medical Director, Johns Hopkins Bayview Care Center, explains, “It’s important to understand that unlike dementia, delirium is a temporary problem that can be treated by figuring out the cause and addressing it.”

The American Geriatrics Society estimates that one third of adults over 70 who are admitted to a hospital experience delirium, and the rates are higher for older adults in intensive care and nursing homes.

Delirium is not a psychological response to physical illnesses, as once thought. In fact, new scientific evidence suggests that abnormal biological processes in the brain are at work. A study published in the Journal of Gerontology compared the brain scans of 22 hospitalized patients taken before and after episodes of delirium. In roughly half the patients, decreased blood flow was specific to key regions of the brain known to control attention and orientation, perhaps explaining the inattention and disorientation associated with delirium.

This may also help explain why delirium can be dangerous: People who become delirious spend more recovery time in the hospital, are more likely to die, and are at higher risk for developing long-term cognitive impairment and dementia.

Detecting Delirium — Delirium may be difficult to detect, particularly in people with memory problems or dementia. Be sure to make allowances for certain personality traits — tell the doctor if a loved one is typically restless or introverted, for instance.

There is no universal rating system to help determine if a patient has delirium; however, the reliability of the following criteria tested positively in a study published in the Journal of Geriatric Psychology. Some central characteristics that researchers identified are listed below. Examples of the type of behavior that might indicate each characteristic are also included.

Delirium Symptom 1 — Shifting attention:
Unable to concentrate during conversations
Switches topics frequently
Easily distracted
Completely inattentive

Delirium Symptom 2 — Poor orientation:
Has problems articulating the date
Doesn’t know the days of the week
Doesn’t know where he or she is
Has trouble recognizing family members

Delirium Symptom 3 — Incoherence:
Speech is difficult to understand
Stops in the middle of a sentence
Cannot express thoughts

Delirium Symptom 4 — Restlessness and anxiety:
Jumpy, edgy, or fidgety
Suspicious of others
Anxious and afraid
Requires frequent reassurance

Delirium Symptom 5 — Delusions and hallucinations:
Perception is distorted or completely wrong
Sees shapes or objects incorrectly
Smells scents that are not there

Delirium Symptom 6 — Poor cognition:
Cannot spell simple words backwards
Cannot do simple math
Cannot recognize simple patterns of words or numbers

UCSF on YouTube- Videos on Caregiving Tips, Value of Autopsy

UCSF’s Memory and Aging Center recently launched a channel on YouTube. “The videos…are intended to educate patients, caregivers and health professionals about the various forms of neurodegenerative diseases.” The “goal is twofold: promote earlier, accurate diagnoses — in order get more patients into research studies and clinical trials; and to help families cope with these devastating illnesses.”

“The value of autopsy” video may be of interest to everyone. The four videos with “Practical Tips for Caregivers” may be of interest to all caregivers. Most of the dementia-related videos are very short. Over half of the videos are on FTD (Frontotemporal Dementia) and CJD (Creutzfelt-Jakob Disease).

You can find the channel or webpage here:

The introductory video is less than two minutes long: “Why YouTube: the effort to diagnose and treat dementias.” It features Dr. Bruce Miller.

There are 20 videos available at the present time. I believe more will be added over time. Let me know if you learn anything! Here’s what available today:

After watching some of these videos, online friend Nan said:

* I learned a crucial difference in alzh.disease and frontal-temporal-dementia….. Alzheimer’s robs memory, while FTD robs emotions.

* Another good point was that the patient seems to be”happily unaware” that he/she has a brain problem.  I’ve said even recently to a friend that perhaps a silver lining to the PSP cloud may be that my husband seems unaware of the severity of his limitations. I think inside their brain the pwpsp may not realize how very slowly they are moving, or how impaired their reasoning/judgement may be.   I have to scold myself for getting frustrated in saying the same thing to my husband day after day – such as, “wait until you feel the bed/or chair with your legs before you sit down.” He continues to just plop down unless we’re right there to assist. In all, the frustration is more on MY part most of the time. He seems to be oblivious to it. He also has to be told so frequently to step inside the U-step walker instead of keeping it so stretched out that he has no real control over it. He says it doesn’t ‘work” right, but that’s only because his arms are completely stretched out and he is standing at least arms’ length from it!!

* I learned from the videos that there are hundreds of kinds of dementia out there. I am amazed at that.

* Finally, from just watching 4 or 5 of the videos, I learned that a gait belt is very necessary in assisting the pwpsp in moving about. We’ve basically used his actual belt in the same manner they model, but I think we shouldn’t be doing that anymore!

I’ve given an overview below of the videos.




The value of autopsy 
Autopsy of CJD patients offers families closure, as it is the only means for providing a definitive diagnosis. Autopsied brain tissue is also the most valuable source of information for neuroscientists studying brain degenerative diseases. [Robin’s note: this video features Dr. Michael Geschwind. Though several specific things are said about CJD, the message in this video applies to all neurodegenerative diseases.] 
01:59 Practical Tips for Caregivers 
[Robin’s note: though several titles mention CJD, the videos themselves say nothing about CJD!] Tips on moving someone from the bed to a chair 
Occupational therapist Karen Gniadek and physical therapist Jennifer Woodruff demonstrate helping a CJD patient move from the bed to a chair. [Robin’s note: use of a gait belt is recommended.] 
01:36 Tips for helping a CJD patient sit up in bed 
Occupational therapist Karen Gniadek and physical therapist Jennifer Woodruff demonstrate helping a CJD patient sit up. 
00:48 Tips on changing the bed of a CJD patient [Robin’s note: though the title mentions CJD, this is not a CJD-specific video!] 
Occupational therapist Karen Gniadek demonstrates how to change the bed of a bedridden CJD patient. 

Tips for helping a CJD patient walk [Robin’s note: though the title mentions CJD, this is not a CJD-specific video!] 
Occupational therapist Karen Gniadek and physical therapist Jennifer Woodruff demonstrate helping a CJD patient walk. 


What is dementia? 
Dementia is a progressive, degenerative disease of the brain that affects multiple brain functions. Alzheimer’s disease is the classic disease, but there actually are hundreds of dementias. [Robin’s note: this video features Dr. Bruce Miller. He says there are probably 100 dementias.] 
00:40 – very short 

Dementia’s varying impacts on memory and emotion 
The two most common forms of dementia in people under the age of 70 are Alzheimer’s disease and frontotemporal dementia. The Alzheimer’s disease patient doesn’t remember what he had for breakfast. The frontotemporal dementia patient behaves abnormally — she’s inappropriately familiar with people, is indifferent to questions and speaks rudely. The explanation for the differences can be seen under the microscope. [Robin’s note: this seems to be a follow-on of the preceding short video.] 

Dementias: Caregiving and diagnosis 
Early diagnosis, early intervention and developing new therapies are the passion of UCSF neuroscientists. At the same time, they realize they will not have a cure tomorrow. A lot of their daily work involves taking care of patients, offering support to their families, protecting them from the bad decisions that might be made. “A lot of what we do is related to care giving and diagnosis.” [Robin’s note: this video features Dr. Bruce Miller.] 
00:36 – very short 

Dementia as a window into the mind 
The various forms of dementia affect different regions of the brain. Their impact reveals the role that the affected brain tissue normally carries out. Peer into the anatomy of the brain with a leader in the field. [Robin’s note: this video features Dr. Bruce Miller. The focus is on AD. FTD is also mentioned.] 
00:51 – very short 


FTD: the most common dementia in those under 60 
Frontotemporal dementia is an early-onset dementia, and is believed to be the most common form of dementia in people under the age of 60. It peaks in the 50s and 60s, in the prime of life. 
00:49 – very short 

Frontotemporal dementia offers insight into emotions 
Frontotemporal dementia usually emerges in the right side of the brain, where it causes dramatic changes in behavior and emotions, including disinhibition and apathy. When FTD emerges on the left side of the brain, it causes a slow disintegration of language and speech. In some of these patients, visual creativity emerges, even while their minds are deteriorating. Eventually the disease spreads across the brain. 

Loss of moral reasoning and sense of self in FTD 
Moral reasoning, like everything else that is complex and sophisticated in humans, involve Moral reasoning, like everything else that is complex and sophisticated in humans, involves the brain’s frontal lobes. The region is affected in frontotemporal dementia. Early in the disease process, FTD patients sometimes carry out illegal activities, such as embezzling and shoplifting, and display insensitivity to others. Overall, they lose their normal sense of self. 

Frontotemporal dementia’s affect on behavior and language 
Frontotemporal dementia has three major subtypes, which emerge in different regions of the brain. Early on in the disease process, one form affects behavior, another language abilities, another loss of words (usually beginning with animals). This latter form of the disease includes a subgroup of patients who experience a dramatic increase in visual creativity, even as their minds are deteriorating. 

Frontotemporal dementia: apparent in the workplace 
The ability to interact well with other people is generally a key factor in success in the workplace. The first signs of frontotemporal dementia often are revealed this environment. Patients make inappropriate comments, insult colleagues and fail to be sympathetic to other people’s concerns. 

Caregivers of FTD patients 
Frontotemporal dementia affects regions of the brain that cause aberrant changes in behavior and emotion. Loved ones face great challenges, first dealing with the puzzling symptoms and efforts to get an accurate diagnosis, and later facing the fact that the personality of the person they have loved is no longer present. The disease presents leaves families isolated and challenges by health care issues. 

Potential therapeutic targets in misprocessed proteins 
In dementias, nerve cells and the connections between them, die. Scientists believe that the abnormal accumulation of certain proteins within nerve cells are involved. In Alzheimer’s disease, there are plaques of amyloid protein. In FTD, there is clumping of a protein called tau. Recently, scientists discovered that a protein called ubiquitin is involved in some cases of FTD. Researchers’ long term goal is to determine the role of such proteins in the disease processes and, where appropriate, develop treatments that alter the structure or accumulation of the culprit proteins. [Robin’s note: this video features Dr. Adam Boxer. The focus is FTD.] 


CJD: a window into more common dementias 
Michael Geschwind, MD, PhD, of the UCSF Memory and Aging Center, discusses Creutzfelt-Jakob disease, a rare neurodegenerative diseases that offers a window into the more common forms of dementia, including Alzheimer’s disease and frontotemporal dementia. 

CJD: The Great Mimicker 
Creutzfeldt-Jakob disease is considered the “great mimicker.” Its effects, on many areas of the brain, cause symptoms also seen in other neurological diseases. They can include memory loss or difficulty with balance and walking, dizziness, behavioral change, visual disturbance, and involuntary movements. 

Symptoms of FTD often mislead caregivers 
The public knows dementia as a disease of memory loss, characterized by forgetfulness, an inability to keep track of personal possessions, a loss of navigational skills. This is the case in Alzheimer’s disease, but in frontotemporal dementia the early signs generally involve behavioral and emotional changes. As a result, caregivers some times don’t know to consult a neurologist. They seek guidance from church leaders, family practice doctors, counselors or therapists.