Dealing With Parkinson’s Disease-Related Depression


NPF’s National Medical Director, Dr. Michael S. Okun, and Vice President of Research Programs, Peter Schmidt, PhD, comment on Parkinson’s and depression in the below article from U.S. News.

The two conditions go hand in hand.
Depression in Parkinson’s disease patients is a little like the riddle about the chicken and the egg: Which came first – the nervous system disorder characterized by impaired movement and slurred speech, or the depression that is both an early symptom of the disease as well as a consequence of it?

Until a decade or two ago, scientists thought the latter was true, says Michael Okun, a neurologist and co-director of the University of Florida’s Center for Movement Disorders and Neurorestoration. “The prevailing thought was that it was a reactionary thing, like a reaction to a traumatic event,” says Okun, who is also the medical director of the National Parkinson Foundation. “Now we think there are biological changes in the brain that we believe underlie depression.”

In Parkinson’s disease, cells are dying off in certain parts of the brain, creating a deficiency of neurotransmitters that affect our mood. Much of the attention has focused on loss of dopamine, which causes the tremors, slowness and stiffness associated with Parkinson’s. But other neurotransmitters – serotonin and norepinephrine – also undergo “robust degeneration,” Okun says, which is largely responsible for the onset of depression.

Depression as an Early Warning Sign of Parkinson’s

Depression may predate the onset of motor impairment, and in fact be the first sign of Parkinson’s disease, five to 10 years before a Parkinson’s diagnosis. According to Jim Beck, vice president of scientific affairs at the Parkinson’s Disease Foundation, 60 percent of Parkinson’s disease patients suffer from depression, which preceded Parkinson’s disease for 30 percent.

Spotting depression early can be difficult, since the initial symptoms may be subtle and overlap with Parkinson’s itself, Okun says. Typical symptoms of both conditions include loss of energy and interest in things, as well as overall slowness, both in movements and mental response time. The earlier depression is diagnosed, the better, since “the longer you are depressed, the harder it is to reverse it,” says Peter Schmidt, chief information officer at the National Parkinson Foundation. “If left untreated, the brain will adapt to being depressed. The brain is optimized structurally to do the things that you do.”

Depression in Parkinson’s patients is also “the main driver of quality of life,” Schmidt adds. This result emerged from the Parkinson’s Outcome Project, a survey of more than 7,500 Parkinson’s patients in the U.S., Canada, the Netherlands and Israel. In other words, depression was the top criterion for patients evaluating their own health status.

That may be a stunning revelation, considering the focus of doctor’s visits is normally on the physical degeneration associated with Parkinson’s, Okun says. That’s in part because most Parkinson’s disease patients are only ever treated for their condition by their neurologists – after having been diagnosed by their geriatrician or general practitioner. None of these doctors specialize in psychiatric issues, nor would they necessarily think to refer patients to a psychiatrist, Schmidt adds.

Patients treated at places that refer them to mental health professionals, which is the case largely at academic medical centers like the University of Florida, have the lowest rates of depression, according to the Project results, Schmidt says. “A lot of these centers are helping patients early,” Schmidt says.

Treating Depression and Parkinson’s in Tandem

At UF Health, psychiatrist Herb Ward’s office is down the hall from Okun’s. “We exchange notes on patients,” Ward says. “It’s the best way to do it.”

Ward says he sees patients even more frequently than Okun will, starting with monthly appointments that become quarterly. Ward normally starts treatment plans with antidepressants, which work directly on the neurotransmitters that Parkinson’s depletes. “We can usually choose an agent that is a good fit with the patient,” Ward says, adding that antidepressants’ typical side effects, like weight gain, can actually play in Parkinson’s disease patients’ favor.

“Weight loss is common in Parkinson’s disease, so weight gain can be a good thing,” Ward says, adding that sleep issues are also common. “We can use a sedating antidepressant at night, so the side effect profile isn’t always a negative thing.”

Psychotherapy and cognitive behavioral therapy are also helpful, especially when combined with antidepressants, Ward adds. And for patients who don’t respond to either of these approaches, the more invasive therapies – transcranial magnetic stimulation and electroconvulsive therapy – work well with few side effects, Okun adds.

The key for patients and their caregivers, experts say, is to know if patients are at risk of Parkinson’s disease and related depression and to be proactive about handling both.

“If you have a family history [of Parkinson’s disease] and develop depression at an early age, you should be aware of your risk of Parkinson’s disease,” Schmidt says, adding that people with a history of depression are 2.4 times more likely to develop Parkinson’s disease, even though the percentage of people over age 55 with Parkinson’s is still relatively small at 1.5 percent.

But the sheer prevalence of depression in Parkinson’s patients, coupled with neurologists’ natural preoccupation with treating the disease’s physical, rather than psychological, consequences, “puts the onus on patients to be well educated,” Beck says. “Be on the lookout for signs, and speak up to physicians. It’s the kind of conversation that needs to happen.”

And mostly, don’t suffer in silence, he adds. While on a positive note, suicides are rarer among Parkinson’s disease patients than the general population, suicidal thoughts plague many patients chronically. Robin Williams may have been one tragic example of that tendency. He was struggling with the early stages of Parkinson’s, which may have exacerbated his struggles with depression. For most Parkinson’s patients, however, suicide is not the outcome because the very loss of energy and apathy associated with the disease (symptoms overlapping with depression) are what actually prevent patients from going through with it, Beck says.

“That may be a silver lining, but it’s no way to live life,” Beck says.
— Kristine Crane
Copyright 2014 © U.S. News & World Report LP.

Glen Campbell’s I’ll Be Me Legacy



I must say I didn’t know what to expect when we journeyed to the memory care facility outside Nashville where country legend Glen Campbell has been living since last spring. More than 5 million people in America have Alzheimer’s, with a new diagnosis every 67 seconds. Like those millions of others, it has touched my family, too.

Glenn Campbell’s New Movie is Called “I’ll Be Me”.

Before heading to Nashville, I had been deeply moved by the new documentary “Glen Campbell… I’ll be Me,” produced by James Keach and Trevor Albert. (It’s opening in New York and Nashville Oct. 24; across the country after that.) The film captures Campbell’s descent into Alzheimer’s — from the diagnosis through a 151-date farewell tour and the triumphs and challenges. As Keach puts it, the film portrays “the gnarly truth.”

Campbell had decided it was only by being completely open about his battle with the disease that he could hope to help others cope with the stigma and shame that often accompany the diagnosis. The unblinking portrait is familiar and heartbreaking to anyone who has seen a loved one travel this road. Campbell’s sweetness and humor is on full display along with his frustrations as the disease worsens.

Both backstage and on stage, the tour video is solid gold. Even as Campbell’s memory fades — and he is forced to rely on the teleprompter for the lyrics to even his most familiar hits — his ability to play the guitar remains extraordinary. Shooting for the film ended nearly two years ago when the disease was still in its relatively early stage — progressing during the tour from Stage 2 to 4. Now, we were told, he is in late Stage 6 of the disease. Stage 7 is the end of the line. What, I wondered, would Campbell be like now?

Campbell’s wife of 32 years, Kim Woollen, took me for a visit with him. Before the visit I asked her if her husband still plays the guitar. She told us that he has two guitars with him and that “sometimes he gives us a big surprise, he’ll pick it up and we’re like, whoa! Where did that come from?”

In March, Dr. Ronald Petersen, director of the Mayo Clinic Alzheimer’s Disease Research Center and Campbell’s doctor, advised his wife that it was time to move him to a specialized memory care facility that could care for him 24 hours a day.
Kim tells me she is at the facility virtually every day, feeding her husband his lunch and bathing him.

On the day of our visit, he brightens when he sees her. And happily joins us for a stroll holding both our hands. While there is no conversation possible now, he decides to play the guitar for me. According to Dr. Petersen, motor memory is often the last to go.

For all that has been lost, music remains in the man.


Saturday, October 04, 2014 04:44PM
LOS ANGELES — Alzheimer’s disease was officially recognized a hundred years ago, but there’s still no effective treatment for it. Now researchers at UCLA say they’ve developed a program that shows for the first time memory loss being reversed.

It’s not a drug; it’s not a procedure; it is a novel, comprehensive and personal approach to treating memory loss associated with Alzheimer’s. UCLA researchers spell out exactly what can be done to reverse what the disease does to the brain.

In the report provided by UCLA, Dr. Dale E. Bredesen explains how Alzheimer’s is a complex disease affected by sleep, diet, even exercise.

“These all — and other things — all contribute to this critical balance in plasticity,” said Bredesen.

Ten memory-loss patients, some with brain-scan-confirmed patterns of Alzheimer’s, participated in a small UCLA trial called MEND (Metabolic Enhancement for NeuroDegeneration).

In the UCLA protocol, patients made dramatic lifestyle changes. They avoided simple carbs, gluten and processed foods. They increased their fish intake, took yoga and meditated. They were instructed to take melatonin, get adequate sleep, incorporate vitamin B-12, vitamin D-3 and fish oil.

Within six months, nine patients saw a noticeable improvement in memory. One patient, who was in the late stages of Alzheimer’s, did not show improvement.

UCLA researchers say the findings suggest at least early on, changing a person’s metabolic processes can bring back memory and cognitive function.

Six of the patients of the patients in the study who had to discontinue working were all able to return to their jobs. Study authors say some patients were followed up to two and a half years and the memory improvements remained.

Plans are underway to do larger studies on this therapeutic program.

For more information on the study: Reversal of cognitive decline: A novel therapeutic program

Horses Are Good Therapy for Alzheimer’s Patients

101_0313The Ohio State study found that being with horses lifted the person’s mood.

In the first study of its kind, researchers have determined that spending time with horses eases symptoms of Alzheimer’s dementia.
A collaboration between The Ohio State University, an equine therapy center and an adult daycare center found that people with Alzheimer’s were able to safely groom, feed and walk horses under supervision—and the experience buoyed their mood and made them less likely to resist care or become upset later in the day.
The small pilot study, which appears in the journal Anthrozoös, suggests that equine therapy—a treatment used today for children and teens who have emotional and developmental disorders—could work for adults, too.
Holly Dabelko-Schoeny, associate professor of social work at Ohio State, said that equine therapy could supplement more common forms of animal therapy involving dogs or cats and provide a unique way to ease the symptoms of dementia without drugs.
“We wanted to test whether people with dementia could have positive interactions with horses, and we found that they can—absolutely,” Dabelko-Schoeny said. “The experience immediately lifted their mood, and we saw a connection to fewer incidents of negative behavior.”
In addition to memory loss, people with Alzheimer’s often experience personality changes, she explained. They can become depressed, withdrawn—even aggressive. As researchers look for a way to prevent or treat the disease, today’s therapies are becoming more focused on how to ease the emotional burden for patients and their families.
“Our focus is on the ‘now.’ What can we do to make them feel better and enjoy themselves right now? Even if they don’t remember it later, how can we help in this moment?” she said.
At the adult daycare center, a National Church Residences Center for Senior Health in downtown Columbus, clients normally partake in crafts, exercise and other activities to manage their dementia. For this study, sixteen of the center’s clients who had Alzheimer’s—nine women and seven men—volunteered to break with their regular routine.
Once a week, eight of the clients would remain at the center and pursue other activities while the other eight took a bus trip to the Field of Dreams Equine Education Center in Blacklick, Ohio. There, they visited with horses under the supervision of National Church Residences caretakers, as well as faculty and students from the College of Social Work and the College of Veterinary Medicine at Ohio State.
The clients visited the farm once a week for a month, so that every participant had four visits total. They groomed and bathed the horses, walked them, and fed them buckets of grass.
The four horses were chosen for their gentle dispositions and calmness when facing new people and new situations. All participate in therapeutic riding programs for children and teens at Field of Dreams.
The researchers saw obvious signs that the clients enjoyed their time on the farm: they smiled, laughed and talked to the horses. Even those who normally acted withdrawn became fully engaged in the experience.
There was a clear improvement in dementia-related behavior among the clients who visited the farm. To track behavior, the researchers used a scoring system called the Modified Nursing Home Behavior Problem Scale, in which staff at the center rated the frequency with which the participants fidgeted, resisted care, became upset or lost their temper on days they went to the farm or stayed at the center.
On a scale of zero to four—zero meaning the client never engaged in the problem behavior, and four meaning that they always engaged in it—scores for the participants who went to the farm were an average of one point lower than the scores for their peers who stayed at the center. So clients who visited the farm were, on average, better behaved throughout that day.
Through mouth swabs, the researchers also measured the levels of the stress hormone cortisol in the patients’ saliva. For participants with less severe dementia, the researchers saw a rise in cortisol levels, possibly due to the “good stress” of being in a new situation.
There was one unexpected benefit, though: the therapy boosted physical activity. The clients all had physical limitations, but when presented with the horses, they were inspired to push the boundaries of those limitations.
Some clients who never wanted to leave their wheelchair asked for help in standing up; others who rarely wanted to walk stood up and walked unassisted, though a caretaker was always there to help them balance. The clients grew more physically active on each visit to the farm.
Family members reported that their loved one remained engaged with the experience even after returning home. One commented to researchers that her mother “would never remember what she did at the center during the day, but she always remembered what she did at the farm.”
While much study has gone into animal therapy as a treatment for dementia, that work has focused on dogs and cats, which can easily be brought to community-based care centers. This is the first study to examine equine therapy for the same population.
And while horses could possibly be brought to community centers for outdoor therapy, a situation where clients could periodically visit an equine therapy center might be the best option, Dabelko-Schoeny said. That way they get the full experience of being on the farm.
Gwendolen Lorch, assistant professor of veterinary clinical medicine at Ohio State and co-author of the study, agreed that the country setting may have made the therapy more effective.
“I think another positive influence for these clients was the environment. They found the quietness and smells of the country very relaxing and restful. This was in contrast to their normal day care environment and their intercity dwelling,” Lorch said. “It is difficult to tell what factors made this successful, but we do know that it was most likely a combination of events.”
This study was funded by a private donor who wanted Ohio State to study the effectiveness of equine therapy for dementia. Now that the study is over, some of the clients’ families have elected to continue to visit the farm.
Coauthors on the paper included Gary Phillips, senior biostatistician at Ohio State’s Center for Biostatistics; Emily Darrough and Sara De Anna, both former master’s students in social work who have since graduated; and Marie Jarden and Denise Johnson, both doctoral students in veterinary medicine.
Categories: therapeutic riding.
Tags: Alzheimer’s, equine, equine therapy, horse, horses, Ohio State
By Amy Herdy

Facts About Memory Loss

by Rita Altman, RN

Each year, Alzheimer’s awareness is heightened on September 21, World Alzheimer’s Day. This dreaded disease impacts not only the person living with it, but also their loved ones. All who know the person experiencing memory loss are affected by watching the inevitable, progressive decline that accompanies it.

According to the Alzheimer’s Association, every 67 seconds someone develops Alzheimer’s. More than 5 million Americans are living with Alzheimer’s and at least 200,000 of them have the younger-onset form. Although Alzheimer’s is the sixth leading cause of death in the United States, it cannot be cured.

Based on these facts and figures, it’s natural for individuals experiencing memory loss, or their loved ones who observe the changes in mood, memory, or personality, to be tempted to deny such changes.

Countless times I’ve heard from family members who clearly recognize that their loved one is experiencing memory loss yet insist that it isn’t as “bad as it seems.” Some even advocate for them to continue to live independently in their own home, hoping that remaining in a familiar environment will help keep memory loss at bay.

But when families make the decision to get their loved one the appropriate care, they quickly discover they can breathe a sigh of relief — all because the person with memory loss is receiving the support they truly need. According to experts, such as the Mayo Clinic, early interventions may also help to slow the progression, which can give the person better opportunities to plan for the future.

Today’s reality is that we cannot wish Alzheimer’s away, and we may be taking risks with our loved ones’ health and well-being if we do not provide them with the extra level of care and supervision to help maintain their safety.

Here are some commonly held misconceptions and ways of denying that a person might have Alzheimer’s or a related dementia.

1. She’s just getting older
Aging is known to be one of the greatest risk factors for developing Alzheimer’s. One’s chances of developing the disease doubles every five years, beginning at age 65, and by the age of 85, the risk is nearly 50 percent.

Despite these sobering statistics, it’s important to note that memory loss is not an expected result for every person who is growing older. However, when some people notice that their older loved one is becoming increasingly forgetful, repeating the same story over and over again, or getting lost while driving home from the grocery store, they write these occurrences off as normal signs of aging. It is essential to encourage the person experiencing these changes to have a thorough check-up by their physician who can help to find the cause.

2. It must be a mid-life crisis
No one wants to consider that a person in his or her 40s, 50s or 60s could have a progressive form of memory loss, though it is a possibility. Frontotemporal dementia is less common than Alzheimer’s and is believed to account for 10 to 15 percent of all dementia cases, with many of these occurring in people under the age of 65. Some of the earliest symptoms are marked changes in personality and language problems.

Some other signs are impulsive, out-of-character behaviors and poor judgment. This can often be seen with regard to financial matters, such as a pattern of running up credit cards with frivolous purchases. While it can be tempting to correlate some of these actions to a mid-life crisis, it is crucial to be aware it may be a deeper issue that requires further evaluation.

3. Stress and lack of sleep must be causing my forgetfulness
Most of us have experienced a poor night’s sleep at one time or another and recall the “foggy brain” feeling that results the following day. Experts and studies tell us that getting quality sleep is important because it helps to solidify newly acquired information as well as remember newly learned information better.

On the medication front, a recent study published in the British Medical Journal suggests that the use of benzodiazepenes, often prescribed to treat anxiety and insomnia, may be linked to Alzheimer’s. Therefore, they recommend that benzodiazepines be used for a short duration of time, not to exceed three months.

People with Alzheimer’s may experience changes in their sleep patterns because of the disease’s impact on the brain, according to the Alzheimer’s Association. The best way to find out if lack of sleep is associated with dementia is to get a thorough medical evaluation.

4. Everybody forgets sometimes
It’s true that aging can contribute to an occasional memory lapse, sometimes referred to as a “senior moment.” Many people have difficulty recalling someone’s name, at times. A truer sign of dementia occurs when a person doesn’t recognize a formerly well-known person, doesn’t know the day or season, or has difficulty remembering new information. These types of changes warrant further medical investigation.

5. She’s just really sad
Depression can cause changes in cognition, including decreased ability to pay attention and concentrate. These symptoms could make dementia and depression difficult to distinguish. According to the Mayo Clinic, one important difference between the two is in the effectiveness of treatment. Medications to treat depression may actually improve a person’s quality of life, whereas Alzheimer’s drugs can only slow the disease’s progression. Knowing this, the physician may decide to provide therapy to address the depression first, followed by a reassessment to determine whether there has been an improvement in memory and concentration.

The Alzheimer’s Association is a great resource and provides a full list of Alzheimer’s warning signals that may indicate a memory loss issue. Above all, know that, while noticing and experiencing these changes can be overwhelming or even scary, you and your loved one are not alone in this journey.

Here’s to hoping that World Alzheimer’s Day will bring increased awareness and help more people get the needed early detection, personalized interventions and most importantly, the care and support that they so deserve!

Follow Rita Altman, R.N. on Twitter:
MORE: Caregiving Dementia Alzheimer’s Memory Loss Warning Signs World Alzheimer’s Day Caregiving