Apathy – description and treatment

Brain Support Network volunteer Denise Dagan came across this article in a recent Parkinson’s Disease (PD) organization’s newsletter about apathy in PD.  Certainly apathy occurs in many of the disorders in the Brain Support Network community as well — especially progressive supranuclear palsy (PSP).  That’s why I’m sharing the article within our network.

These statements in the article caught Denise’s eye:

“Persons with apathy generally do not recognize the symptoms, so caregivers will need to bring it to medical attention. … It is important to assess for apathy because those with apathy are 2.5 times more likely to report poor quality of life in comparison to those without apathy. Apathy is also associated with more severe motor impairment. PD patients with apathy are less physically active and may not adhere to medical recommendations. Relationships may suffer as well since caregivers often experience more frustration and stress.”

The author of the article is Rosa Chuang, MD.  She may be familiar to some in our multiple system atrophy (MSA) group.  She used to practice at Stanford but is now in Seattle.

The article is copied below.




Apathy in Parkinson’s Disease
Parkinson’s Pathfinder (Newsletter by APDA Northwest)
Summer 2017
By Dr. Rosalind Chuang

Apathy is a common non-motor symptom of Parkinson’s disease but often times not recognized or commonly mistaken for depression. Some studies show that 30-40% of PD patients have apathy, but the frequency can range from 20-70%, depending on how patients are asked. It can occur at any stage of PD and can even occur before motor symptoms develop. It is important to assess for apathy because those with apathy are 2.5 times more likely to report poor quality of life in comparison to those without apathy. Apathy is also associated with more severe motor impairment. PD patients with apathy are less physically active and may not adhere to medical recommendations. Relationships may suffer as well since caregivers often experience more frustration and stress.


Apathy is defined as:
• Loss of motivation or lack of initiative
• Loss of pleasure
• Decreased goal directed behaviors
• Decreased goal directed cognitive activity
• Decreased interests and emotions (reduced display of emotions)


A common complaint from family and friends is that the PD patient just “sits around” or “doesn’t seem to care about anything.” Nothing gets done and a person often declines social activities if given a choice. This can be misinterpreted as fatigue, laziness, or lack of empathy/ uncaring.

Persons with apathy generally do not recognize the symptoms, so caregivers will need to bring it to medical attention. Medical providers may ask specific questions from the Starkstein apathy scale to determine apathy. Some questions on the scale include:

• Any interest in learning new things?
• Does anything interest you?
• Do you look for things to do?
• Are you concerned about your condition? Or unconcerned about many things?
• Does someone have to tell you what to do each day? Do you need a push to get started on things?
• Are you neither happy nor sad, just in between?

As you can see, these questions are similar to those to assess for depression, so sometimes it can be difficult to separate apathy from depression. Often times, patients can have both depression and apathy, but in ~10- 28% of time, patients can have apathy alone.


In both depression and apathy, a person may no longer enjoy things. However, someone with depression may endorse feeling “blue” or sad. Other “negative” symptoms of depression include inappropriate guilt, loss of appetite, loss of sleep, or thoughts of death. An apathetic person does not cry frequently or have suicidal thoughts.


It is important to evaluate if the symptoms are from apathy alone because it can affect treatment. If apathy is associated with depression or anxiety, treatment of co-morbid conditions can help reduce apathy. Sometimes isolated apathy can also respond to the SSRIs used to treat depression, but generally studies don’t show good response. Dopamine medications (levodopa or dopamine agonists) may also improve apathy. (In some patient who have undergone deep brain stimulation for PD, rapid withdrawal of their PD medications resulted in apathy.) In one trial, PD apathy responded to rivastigmine, a medication used for dementia, even though the patients did not actually have dementia.

For isolated apathy, I generally recommend non-pharmacologic treatment. These include:

• Write down at least 3 daily goals and 3 weekly goals. These goals can be physical, social, or thinking activities.
• Daily goals should be specific and can be reasonably achieved.
• Create a schedule: be specific when each task will should be accomplished.
• Review the written list at breakfast, lunch and dinner to remind yourself of the next goal.
• Cross off each task as you complete them.
• Say “yes” to at least one thing every day even if you don’t feel like it.
• Maintain routine: continue to do things you used to do, even if you don’t feel like it.
• Recall an activity that you used to enjoy and try to restart that activity.
• Exercise even if you don’t feel like it.
• Must leave the house at least once a day

Even though apathy is not as easily treated as the motor symptoms of PD or other non-motor symptoms such as depression, simply recognizing and understanding apathy is an important part of overall management of Parkinson’s disease.

“How to Improve Resilience in Midlife” (NYT)

Several years ago, we helped put on a caregiver conference where the keynote speaker talked about building resilience and coping skills in the face of parkinsonism and neurological decline. He said that resilience is both nature and nurture; there are definitely things we can actively do to build resilience. This article in yesterday’s New York Times is about that. Here’s one short quotation from the resilience expert interviewed for the article: “Live your life in a way that you get the skills that enable you to handle stress.”

The expert suggests this approach to improving resilience:

* Practice Optimism
* Rewrite Your Story
* Don’t Personalize It
* Remember Your Comebacks
* Support Others
* Take Stress Breaks
* Go Out of Your Comfort Zone

Here’s a link to the article:

How to Improve Resilience in Midlife
By Tara Parker-Pope
New York Times
July 25, 2017


“Recording a Legacy: How to Create a Life Journal”

This is a recent blog post from Crossroads Hospice & Palliative Care (crossroadshospice.com).  The post describes their “Life Journal” program and encourages all families to consider creating such a journal.

In a separate blog post, Crossroads Hospice provides a list of questions to ask a loved one in order to create a journal or something similar:


Note that Crossroads Hospice operates in seven states.  One of those is NOT California!




Blog: Hospice Views
Recording a Legacy: How to Create a Life Journal
Posted on Tuesday July 11, 2017
Crossroads Hospice & Palliative Care

One of the most popular segments on NPR’s Morning Edition are recordings from StoryCorps (storycorps.org), a non-profit organization with the mission to collect, share, and preserve the stories of individuals from all walks of life.

StoryCorps typically has individuals interviewed by a friend or family member while a trained StoryCorps facilitator assists. After the interview, the individuals receive a CD of their conversation. With their permission, another copy is archived at the American Folklife Center at the Library of Congress.

Life Journals capture a legacy.

At Crossroads Hospice & Palliative Care, volunteers interview patients about their life story and gather the words and photos in a hardbound book called a Life Journal. The journals contain the history of the patient’s life, including their heritage, life experiences, treasured moments, and advice. The Life Journal is a lasting legacy to reinforce how important parts of the patient’s’ life has been to them and their family. It also provides the family with a book to cherish after their loved ones have passed.

You can create a similar book with your loved one’s stories, recipes, photos, artwork, or words of wisdom.

How to Create a Life Journal

Start by finding a good time to interview your loved one. Holidays may be convenient if you don’t often see them otherwise. However, holidays can also be chaotic. You may find it easier to schedule several days when you and your loved one will be able to give the project your undivided attention.

Interviewing for a Life Journal

For someone you are close to, you probably already know a lot of the big family stories. You can ask your loved one to retell these stories or fill in some additional details to get the conversation started. Then start to work through different areas of their lives – their family and heritage, school days, time in the military, courtship of a spouse, and raising a family are all good starting points. Use our list of questions to ask an older relative to get ideas on what to ask.

Once you have the basics covered, schedule a follow-up visit to fill in details. At this second visit, you should have a good idea of what the outline of your loved one’s Life Journal is going to look like. This is a good time to confirm details and look through old photos together to go along with the stories you are including in the book.

Compiling the Life Journal

Having gathered all your notes and photos together, you have a few different options for how you would like to present them.

For those comfortable with a computer, the easiest way to create a Life Journal is to use an online service like Shutterfly to combine the stories and photos together. The user-friendly application will walk you through choosing a design and color scheme that best fits your loved one’s style and interests.

For those less technologically inclined, a scrapbook is a wonderful alternative. Craft stores have many options for books and added embellishments like stickers and decorations. You or a friend or family member can print out the stories you wish to include or can write them out by hand.

Layout each page of your scrapbook on blank pieces of paper before you begin affixing anything in the final book. This will give you the opportunity to make adjustments to the layout and the order of pages. Once you are sure you know how you want the book to be laid out, begin gluing down the key elements like stories and photos, then add things like quotes and stickers.

Presenting the Life Journal

Once your project is complete, share it with your loved one. They will enjoy reading the stories as much as you do. If your loved one is willing, you can also schedule a family book release where the family can come together to enjoy the book and share additional stories. If you do a book release party, consider recording some of the new stories you hear for posterity. You never know where these stories will lead you.

Copyright © 2017 Crossroads Hospice & Palliative Care. All rights reserved.

Save the Date! Saturday, October 28, PSP/CBD Research Update and Family Conference

Save the date!

Brain Support Network will host the:

PSP/CBD Research Update and Family Conference
Saturday, October 28, 2017
Crowne Plaza Foster City (San Francisco Bay Area)

This conference is for families coping with progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD).   Professionals and anyone in the community are also welcome to attend.

BSN’s planning partner is Dr. Adam Boxer and the team at the UCSF Memory & Aging Center. UCSF is the lead institution for PSP and CBD clinical trials. We are lucky to have them in our backyard!

The conference will be run from 9am to 5pm. The morning will feature international researchers in town for a major conference on PSP, CBD, and tau. The afternoon will feature Bay Area clinicians (from UCSF and Stanford), healthcare professionals, and families.

We anticipate registration will open in early September. Join our PSP or CBD email lists and we’ll send you an update when registration opens. Alternatively, check back at our website in September to register. Our meeting facilities are planned to accommodate 150 participants.

Stay tuned for more details!



Eight medical alert systems worthy of consideration (Reviews.com, February 2017)

This blog post summarizes the evaluation done by Reviews.com of 69 medical alert systems in early 2017. There were several winners:

Best customer service – Bay Alarm Medical
Best response time – Medical Guardian
Best mobile technology – MobileHelp

Five other systems to consider were:

Acadian On Call
Philips Lifeline
GreatCall Lively
Walgreens ReadyResponse

(Note that Philips Lifeline is available at a reduced rate from many hospitals in the San Francisco Bay Area.)

Reviews.com encourages consumers to “take action”:
* don’t dance around the subject with an elder
* evaluate the most appropriate system for your situation
* check your mobile coverage

In its evaluation, Reviews.com considered these factors:
* nationwide coverage
* whether the device required a full home security system
* excellent purchasing process
* breadth of equipment
* easy to get started and easy to stop the service

Here’s a link to the Reviews.com article:


Best Medical Alert Systems
Updated: February 20, 2017