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

The Spiritual Gift of Caregiving

I have to say that some of the most compassionate people in my life have worked in elder care. The desire to create places and support people who provide care is huge – and a vision and task that is never finished, somehow in this imperfect system we often fall short.  I am honored to know directors of programs who are the tireless advocates for the elders they serve. Despite differences of opinions, and sometimes lack of resources, they inspire their teams to be with clients, to understand that each person carries a sense of self and a personal story that we should learn about, not judge.   Paula


by Donald Koepke

I believe that caregiving is one of the most vital tasks in which a person can become engaged. Day in and day out caregivers touch the lives of loved ones when they feel the most vulnerable and thus the most open to change.

No one likes to feel vulnerable and helpless. In the book, Tuesdays with Morrie, a man by the name of Morrie Schwartz is stricken with ALS, or Lou Gehrig’s disease where the nervous system deteriorates to the extent that the person becomes trapped in his or her own body. Early in his disease, Ted Koppel, a famous TV newscaster and professional interviewer interviewed Morrie. Ted Koppel was in Morrie’s living room videotaping for his next show. “The two men spoke of the afterlife. They spoke about Morrie’s increasing dependency on other people. Morrie already needed help eating and sitting and moving from place to place. What, asked Ted Koppel, did Morrie fear the most about his slow, continual, never-stopping decay? Morrie paused. He asked if he could say this certain thing on television. Koppel said go ahead. Morrie looked straight into the eyes of the most famous interviewer in America. “Well, Ted, one day soon, someone’s gonna have to wipe my ass.” (Tuesdays with Morrie, Mitch Albom, p. 22).

No one likes to feel vulnerable and helpless. Everyone wants to be in control, strong, capable. To be vulnerable is to feel on the edge, in danger of being hurt, exposed, open to ridicule or shame (or worse). To be vulnerable can cause a loved one to withdraw, become defensive, even angry because they want to feel safe again getting some distance between themselves and this illness that is providing such dis-ease. They want to again feel in control.

So much of whom we feel ourselves to be is wrapped up in our bodies. In fact, our bodies are our selves. What does advertising and TV tell us about the body? Youth is good, age is bad. Shapely-ness is good, too much weight is bad. Strength is good, dependence is bad. I think advertising tells us that if we don’t have strong bodies that are beautiful, even sexy, that we are less of a person and have less value. That is why so many people despair over loss of bodily function, especially bowel and bladder. Some of us can even remember when we first began to have control over bowel and bladder. How excited our parents were. How much praise we were given. We were now big girls or big boys. We were important, capable, valued. We were finally like mama and papa!

And thus, to lose that ability to control oneself, to require the use of “adult undergarments”, often means a loss of dignity and self-image. Thus a loved one can become ashamed, not over something that they can or can not do, but because of what they have become: less of value, more dependent, less capable. Americans value words like “I can, I will, I must.” They often feel shame when they are forced to say, “I can not, I need.” Human beings often feel shame when they feel vulnerable.

And this is exactly where the efforts of caregivers enter the picture. Each and every day caregivers touch people lives at the point of their vulnerabilities, at the point of what they can not do. And it is how they are treated, at this tender and open moment, that can make all the difference in the world. Whether it is helping them dress in the morning, or feeding them their lunch, or even changing their “adult undergarments”, caregivers are touching loved ones in their weakness, in their humanity. And if this moment is treated with respect, if the one-who-is-weak, incapable, limited, is received with dignity, they will feel renewed, even empowered by the presence and service of the caregiver. But if the caregiver treats this moment with disrespect or even an “I don’t care” attitude, our care-receivers will feel exposed, threatened, even shame not by what is done to them, but in how it is done.

Touching persons at their weakest moments can be likened to changing their diapers. During this time caregivers are physically touching them more intimately than perhaps any other human being, except perhaps their mothers or fathers. In changing their diapers, and, in the words of Morrie Schwartz, wiping their asses, caregivers are touching their souls, because, as we have said before, we are our bodies. Within the task of caregiving, our loved ones are literally naked before the caregiver. And in that act of care, caregivers convey more powerfully than any sermon by a priest or rabbi that they are of great worth, or are worthless; that they are of great value, or of no value at all; that they are of great importance, or are simply one more task to be done before the caregiver is able get on with what they really want to do. Why can’t the act of changing diapers, or providing any assistance to the weakness of another, be an act of caring that says “You are human! You are alive! You are important in spite of, and perhaps because of, your weakness.”

Wendy Lustbader, in her book Counting on Kindness, writes about an eighty-year-old woman who was hospitalized. She spoke of her caregivers. “I knew the nurses by their hands. There was one with such delicate fingers that I cried a little when I heard her come on duty. She made me feel like she had all the time in the world. The others made me feel like a lump of flesh, like they had to get me out of the way as fast as they could. But those hands! I knew it was going to be a good day when she squeezed my arm in the morning. She would put a fresh gown on me and brush my hair with such tenderness and patience. You can’t imagine how much it meant to me, there in that strange place, to be touched like that.” (Counting on Kindness Wendy Lustbader, p 52-53)

It is through a caregiver’s acts-of-care that can promote shame or pride, and convey value or lack-of-worth, for caregivers touch people when they are the most vulnerable. Caregivers touch them at the point of their weakness, their “I can’ts” and perhaps, for the first time in their lives, to feel vulnerable but still valued.

What a magnificent gift is caregiving.
Donald Koepke
Center for Spirituality and Ethics in Aging
Donald Koepke is the Director of the Center for Spirituality and Ethics in Aging at the California Lutheran Homes, Anaheim, California. Rev. Koepke earned his Master of Divinity from Lutheran School of Theology at Chicago and completed a year-long residency in Clinical Pastoral Care at the UCLA Medical Center in 1995. He also earned a Certificate in Gerontology at the Geriatric Pastoral Care Institute at the Center for Aging, Religion and Spirituality, Minneapolis, Minnesota.

Rev. Koepke is a member of the American Society on Aging, Forum on Spirituality and Religion, and serves on the Forum’s Governing Council as well as the National Council on Aging’s National Interfaith Coalition on Aging, serving as secretary to its Delegate Council. He is a Clinical Member of the Association of Clinical Pastoral Educators, a Board Certified Member of the Association of Professional Chaplains and endorsed by the Evangelical Lutheran Church in America for Specialized Ministry.

He has conducted numerous professional workshops at national and regional conventions of aging, service providers to the elderly, caregivers, churches and other faith communities, families and older adults specializing in spirituality and aging.
Center for Spirituality and Ethics in Aging
891 South Walnut Street
Anaheim, CA 92802