“The Soul of Care: The Moral Education of a Husband and a Doctor” (book review)

This is a review of a new book “The Soul of Care: The Moral Education of a Husband and a Doctor” by Arthur Kleinman, MD, a psychiatrist and anthropologist at Harvard.  It is about the “stressful, harrowing, depressing, and rewarding” aspects of caregiving for a spouse with early-onset Alzheimer’s Disease.

Excerpt from this article:

In his new book, [the author] chronicles the harrowing decade he spent caring for his wife, Joan, after she was diagnosed with early-onset Alzheimer’s disease in her 50s.  He describes the process of navigating a health-care system that seemed to offer plenty of clinical care but little compassionate care as she declined from a lively, witty Sinologist to a woman unable to see, dress herself or recognize loved ones. In moving detail, Kleinman tells the story of a husband trying to honor, in the best way he could, his wife’s ultimate wish: “I will not die without dignity.”

You can read the full article here:


Caregiving for a sick loved one can be stressful, harrowing, depressing — and rewarding
By Dhruv Khullar
September 30, 2019 at 6:00 a.m. PDT
Washington Post


“Psychiatric and Cognitive Complications in Parkinson’s” (Webinar Notes)

Last week, the Davis Phinney Foundation (davisphinneyfoundation.org) hosted a webinar on “Psychiatric and Cognitive Complications in Parkinson’s.”  The speaker was Dr. Daniel Weintraub, a psychiatrist at UPenn.

A recording of the webinar is available here:  (must share your email address)


The Stanford Parkinson’s Information & Referral Center took notes from the webinar.  The notes are shared below.  The Q-and-A is definitely worth reading.



Notes from Stanford Parkinson’s Information & Referral Center

“Psychiatric and Cognitive Complications in Parkinson’s”
Davis Phinney Foundation Webinar
Speaker: Dr. Daniel Weintraub, psychiatrist
September 11, 2019

Dr. Soania Mathur, a family physician and a person living with Parkinson’s, was the moderator. Dr. Mathur starts off saying that generally people notice certain changes, as they get older- forgetting someone’s name, forgetting a word, etc. But when we have PD we worry when these symptoms show up that it might be the sign of something more insidious.

Dr. Weintraub says cognitive changes; both within and out of PD can fall into two buckets:

Mild cognitive impairment – common in PD, can show up early in the disease course. Includes things such as word finding problems, attention issues, problems multi-tasking and problem solving. Many of these changes don’t progress over time. If they do, it can develop into:

Dementia – When cognitive impairment becomes severe enough it starts to interfere with day-to-day functioning.

Dr. Weintraub says we want to identify patients as early as possible in the decline progress. If cognitive changes are stable over time, then you would expect and hope they should not progress. It is when these changes continue to progress or become all encompassing over time that there is worry about a more ongoing cognitive decline. Many patients who have word finding problems, for example, may report these problems years later, but they haven’t gotten worse with time.

Even in the non-PD population, about half of the population at age 85 can be said to meet criteria of dementia. Main risk factor is just getting older.

Question: How to differentiate between Alzheimer’s and Parkinson’s disease related dementia?

If someone has a PD diagnosis already, they are never diagnosed with Alzheimer’s. Clinically, someone could be diagnosed with PD with dementia or PD with cognitive impairment. We really don’t see Alzheimer’s and Parkinson’s diagnosed together.  If someone has a pre-existing diagnosis of Alzheimer’s, and then develops signs of PD, they are typically diagnosed with Alzheimer’s with a secondary diagnosis of PD. From a clinical standpoint, it is two separate diagnoses. About one-third of PD patients with dementia while alive also meet the criteria for Alzheimer’s at the time of autopsy.

Question: What is the timeline of the process of cognitive decline?

As you may know, there is so much variability in PD, that it’s hard to make a sweeping generalization of the typical course. Some people develop cognitive impairment early in the disease course, or when it develops it rapidly progresses. But, there are also people who have had PD for 10 plus years who have had very little cognitive decline.

Question: Is there are a way to predict who may experience significant cognitive decline?

Dr. Weintraub says we are not sure, but certain features may be associated with more rapid or longer-term cognitive features, such as:
– Males are more likely than females
– People with lower formal education levels
– People who have postural instability gait disturbance subtype of PD (more rigidity in center of body, less classical tremor presentation)
– Certain psychiatric symptoms/ other non-motor symptoms like REM sleep behavior disorder

Question: Is there any relationship between age of onset/ diagnosis and likelihood of more severe cognitive decline?

Age generally has the most significant impact. The older you are, the older the disease onset, the more likely you are likely to have cognitive impairment and cognitive impairment decline. People with younger age of onset seem to be protected because they don’t get to older age for longer period of time. That being said, looking at autopsy studies looking at brains of people with, though with more widespread brain changes are more likely to have cognitive impairment. Spread from motor area to more, to outer part of brain we associate with cognition, there is association in that regard.

Question: Are there any co-morbid medical diagnoses that make it more likely for the person with Parkinson’s to have cognitive decline?

Dr. Weintraub says this is an important question while we are still in search of better cognitive enhancement treatment. Co-morbid blood vessel disease is a contributing factor within PD as well as outside of PD.  Conditions such as:
– high blood pressure
– high cholesterol
– high triglycerides

All factors hopefully have some control over, need primary care management. The more unmanaged these conditions are, the more likely you are to be damaging blood vessels in the brain that contribute to memory and thinking. May not be able to do much about the PD process at this moment in time, but minimizing these other factors.

Complementary piece is cognitive exercise, physical exercise that is meant to enhance overall health including cognitive health. Cognitive exercise includes studies suggest if you engage in intellectual activities (can vary for people, reading, conversation, puzzles, games, etc.) there is some preliminary evidence this may be helpful to cognition. We don’t know if it’s protective or helpful in the long term. But it’s something that is recommended to do. With physical exercise there is some evidence, both with the PD and non-PD population, that it may have short-term cognitive benefits. (Getting your heart rate up 4 to 5 times a week for at least 30 minutes).

Question: Are there any effective treatments that work well in the context of PD progressing to dementia?

Dr. Weintraub answers that we are currently constrained to using medications that have been tested and approved for Alzheimer’s disease. Two main classes:

– Cholinesterase inhibitors – boosts chemical in the brain called acetylcholine, which has to do with memory and attention. Rivastigmine is FDA approved for PD dementia. These seem to work as well or better for PD than in Alzheimer. Effect is modest on average.

– Memantine is a different class of medication that affects the neurotransmitter glutamate, which is also associated with memory and thinking ability.

These are the two FDA approved available agents we have. There are numerous studies currently going on testing a range of medications as well as transcranial direct current stimulation, transcranial magnetic stimulation, DBS, cognitive exercise studies, physical exercise studies. There is a lot of research in the area of cognition and PD. We hope there will be more disease modifying therapies that develop over time, that can slow or halt the disease over time.

Question: Are there medications that may need to be removed to help cognition?

There are a class of medications called anticholinergics that block acetylcholine, and are associated with worse cognitive performance and more cognitive decline long-term. An example is Benadryl. Sometimes benzodiazepines are needed for anxiety and sleep in PD. These medications can have cognitive side effects and need to be used cautiously. Certain pain medications, specifically narcotics or opiates can have cognitive side effects. If you are on any of these types of medications, it is important to talk to your physician before stopping them.

Question: If I, or my care partners, suspect that there may be some cognitive issues going on, what do we do next? Who do we go to for help and how will they diagnosis?

Dr. Weintraub would like to see every patient with a PD diagnosis get routine testing. There are screening instruments such as the Montreal Cognitive Assessment (MOCA) that should be given at the time of diagnosis, and given annually. Every year a patient should have a cognitive screening test done, which takes only about 10 minutes. Let your neurologist or movement disorder therapist know what’s going on, and someone in their office should be able to administer a test. A neuropsychologist can do more detailed testing (1-1.5 hour) that will give you an all-encompassing picture of cognitive abilities.

Question: What advice do you have for care partners who are now facing a future with a loved one with a cognitive impairment?

Dr. Weintraub explains that it’s hard to generalize. Hallucinations (false sensory experience) and delusions (fixed false beliefs) together fall under the umbrella of psychosis, which can occur together with cognitive impairment. As patients become more cognitively impaired, they are more likely to have these hallucinations. Hallucinations and delusions can be accompanied by sleep disturbances or agitation. There can be a snowball effect of cognitive changes, psychosis, poor sleep, agitation or aggression, and this can become unbearable for family members. Dr. Weintraub’s advice is to try to anticipate, and not wait to get help until things are too far advanced and become a crisis. It is harder to make decisions in a crisis situation. Consider whether a durable power of attorney is in place, or advanced directives have been put together. Is there long-term insurance available? Is a day program needed to provide some relief? We hear so much about Alzheimer’s, but PD is such a more complicated and burdensome illness. You have the cognitive changes, at times, but also have neurological complications where patients may be less able to care for themselves physically.

Question: Does psychosis occur in PD without a cognitive issue?

It can, earlier in the course. Called minor or subtle psychosis. Can be a sense of presence, where someone in is the periphery of the visual field, or illusions, seeing something that is there, but mis-identifying it. A strong predictor of who is going to have psychosis is how much medication you are taking – the more and higher the dosage you are taking, the more likely you may experience psychosis. For this reason, one of the first things the neurologist does is to revisit the PD medications.

Question: Is this a reflection of the medications themselves or more a reflection of the severity of the disease that the medications are treating?

It’s an interaction. Disease, or age, and medication interaction.

Question: Depression and anxiety are very common in PD population. How common?

One-third to one-half of people with PD can experience depression or anxiety symptoms. If you are depressed, you are more likely to have anxiety symptoms and vice versa.

Question: Are there medications that treat depression in the context of PD disease?

Randomized control trials have demonstrated the effectiveness for a couple of the newer anti-depressants, the SSRIs and SNRIs. One of the older anti-depressants, called a tricyclic, have also been shown to be effective. One of the PD medications (dopamine agonist) has been shown to be effective for depression in PD (although not effective for the motor symptoms).

Question: are there any medications that are normally given to patients with depression that worsen PD symptoms?

There has been some mild concern that SSRIs can worsen tremor, although overall studies show they don’t significantly affect this.

Question: How do you treat anxiety in PD?

Anxiety is a little more varied than depression in terms of how it presents. There is generalized anxiety, phobia symptoms, and also non-motor fluctuations- as medication dose wears off, motor and non-motor fluctuations can occur with the wearing off. The type of anxiety informs the type of treatment. All the newer anti-depressants are also approved for the treatment of anxiety disorders. Since they are safe and well tolerated over all, we tend to use these first. Sometimes we use anti-anxiety agents. They have to be used cautiously, but this may include Clonazepam, used for REM sleep disorder, Lorazepam, or Xanax.

Question: can you describe what an impulse control disorder is and how to recognize?

These problems are more common than we once thought and can be difficult to deal with. This is the disorder that is most strongly associated with PD medication use. The medication class most strongly associated with it are the dopamine agonists, though other medications can contribute. The four main impulsive control disorders are:

– Gambling
– Sexual behavior
– Buying
– Eating

It can take the form of any activity that a person is engaging in to excess, or an excess of what they would’ve done before.

Question: What can we do about this, if a care partner notices a change in behavior?

The neurologist would typically want to take a look at dopamine replacement therapies, which might need adjustment. Sometimes people might be referred to DBS at this point, as it might be difficult to make adjustments to medications. Occasionally we use psychiatric medications to help treat, such as SSRIs.

At the very end of the time, Dr. Soania Mathur says with most things with PD, it’s really a team approach. (movement disorder specialists, social workers, neuropsychologists, OT, PT, speech therapist, psychiatrist, etc.) She ends by reminding folks to focus on today and celebrate their daily victories.