“The Givers” – article on caregiving (Scientific American Mind)

There’s a nice article in the current issue of Scientific American Mind magazine focuses on caregiving.

The author notes that “experts emphasize four key elements for managing the stress and maximizing the rewards of caregiving”:

Mastery: Learn as much as possible about the disorder you are dealing with.

Coping strategies: Turn to advocacy and support groups, counselors and therapists to learn specific skills such as how to develop a more positive view of a loved one’s behavior and how to think about one’s own journey as a caregiver. Learn to focus on good care for your relative rather than making the person happy, which is often an impossible job.

Social support: Set aside any notion that you should be able to handle the responsibilities on your own. Reach out to family, friends, religious organizations, volunteer organizations and illness-specific support groups for sympathy, for humor and for hands-on help.

Stress reduction: Do exercise and do use respite programs. Also, try mindfulness training.

Here’s a link to the Scientific American Mind website; you can pay about $7 to obtain the article.


The Givers
Scientific American Mind, Vol. 27, Issue 6
Nov/Dec 2016
by Francine Russo


CurePSP Announces 2017 International Research Symposium

I’m currently at the CurePSP International Research Symposium in NJ.  It was just announced that next year’s symposium will be in San Francisco, at UCSF Mission Bay.  The symposium will be all day (8am to 8pm) on Friday, October 27th.  There’s a reception at a restaurant near Union Square on Thursday night.  The event is free, though CurePSP asks for a donation.

You can register now, if it’s of interest:


This event is for researchers — the top geneticists, stem cell biologists, and others from around the world.  Ninety percent of the content is well over my head (as it’s mostly basic science not clinical work) but I try to attend when I can to feel buoyed by the great minds working on PSP and CBD research.  Of the 100 or so people in the room, there are only three or four of us laypeople in attendance every year.

I’m thinking we can try to figure out a Brain Support Network PSP/CBD support group gathering in conjunction with the event.  Stay tuned….


PSP story – “The Falls Were Bad. The Diagnosis Was Worse.”

Thursday’s New York Times has a nice article about progressive supranuclear palsy (PSP).

The story is about a Filipina named Betty whose “unexplained falls” began at the age of 72.  An eye test with a neurologist plus the falls led to a diagnosis of PSP.

The article mentions “Last Dance at the Savoy,” a beautiful new book about PSP by actress Kathryn Leigh Scott, whom I had the pleasure to meet at the February 2016 CurePSP conference in San Mateo.  Kathryn Leigh Scott says about PSP:  “The biggest takeaway is to have patience. PSP has no treatment, no cure. It’s important to enjoy every precious moment.”

The article describes PSP as follows:

“The condition can present with multiple symptoms: loss of balance, swallowing problems, slurred speech, an inability to walk or talk. Difficulty moving the eyes, especially up and down, and poor bladder control are also common. Depression, memory and thinking problems or loss of inhibition can also occur. All get worse with time.”

Five years later, Betty can no longer walk or talk.

Here’s a link to the article:


The Falls Were Bad. The Diagnosis Was Worse.
By Sylvia Rupani-Smith
New York Times
Oct. 20, 2016



“Hospitals struggle to address terrifying, long-lasting ‘ICU delirium'”

The ICU can be a dangerous place for neurologically normal people.  Imagine how much worse it is for our loved ones who are neurologically impaired!

Here’s an excerpt from a recent article in STAT (statnews.com):

“Anywhere from a third to more than 80 percent of ICU patients suffer from delirium during their hospital stay. And one-quarter of all ICU patients suffer from post-traumatic stress disorder once they leave, a rate that’s comparable to PTSD diagnoses among combat veterans and rape victims. Patients with ICU delirium are less likely to survive and more likely to suffer long-term cognitive damage if they do.”

One critical care physician quoted in the article calls ICU delirium a “massive, massive public health problem.”

Read the full article here:


Hospitals struggle to address terrifying and long-lasting ‘ICU delirium’
By Usha Lee McFarling
October 14, 2016


“Life Hacks,” “Technology Assistance,” and other caregiving suggestions

This post shares some good suggestions to caregivers, whether you have a “career” or not.

The “Caregiving and Your Career Virtual Conference” is a three-hour video hosted by CareGiving.com.  Despite the title, it actually has remarkably little to do with caregiving and maintaining your career.  But it does offer suggestions on “Life Hacks,” “Technology Assistance,” and other aspects of caregiving.  See:


Brain Support Network volunteer Denise Dagan recently watched parts of the three-hour conference and has shared some suggestions for caregivers she found worthwhile.  Take it away Denise….


“Caregiving and Your Career Virtual Conference”
Notes from Denise Dagan, BSN volunteer

The video conference is set up as six 20-minute talks by various caregiving authors and bloggers in succession.  The conference is billed as advice for working caregivers in balancing those two demanding responsibilities.  I say ‘billed’ because some of it is good advice, whether you’re working outside the home, or not.

For instance, the third session (55 minutes into the video) is Life Hacks.  Some of the good suggestions include:

– Keep a hospital bag by the door always packed with a jacket, water bottle, toiletries, underwear, energy bars, a book or magazine, etc..

– Maintain a notebook with medical records, POA, Rx list, etc..  Take it to all medical appointments & keep it in your emergency hospital bag.

– Keep a single, color-coded, family calendar (especially if you have multiple volunteer caregivers). Keep a copy in your hospital bag.

– Use Amazon Fresh ($299 annual fee) or Safeway ($12.95 on orders under $150) grocery delivery.

– Keep a pad & pen in your purse with a running list of who offered to help and what they offered to do.  When you need help, call them!

– Keep thank you cards and addresses in your purse.  Use waiting time with doctors to write and mail them.

– Pick a uniform (jeans and a sweater) so you never have to think about what to wear -OR- put 7 outfits on hangers for the week.

– If you need a same day medical appt., call between 10a-11a.  Cancelations have come in, but not been filled, yet.  You might get lucky!

The fourth session (1:27 minutes into the video) is Managing a Caregiving Crisis.  Good advice from this session is:

– Go to the doctor sooner than later to avoid hospitalization.

– If hospitalization is necessary, and you have a medical alert button, use it to call paratransport.  Admission is faster than driving someone yourself.

– Ask your doctor about Concierge service (may be an additional $), so you can do some things over the phone and avoid transportation hassles.

– Keep urinary sample cups at home to you don’t have to transport the person being tested, if this is a frequent issue.

– Make it a policy to have a salad for lunch.  Its a stress reliever (1 less decision to make), and healthy for you.

– There is power and knowledge in connecting with others who have been through a similar caregiving experience.

– Remember, caregiving duties don’t stop with death if you are executor of the will.  That can drag out your stress, and grief.  Get support.

– Make a two-column list of things you can control and things you can’t.  Let go of worrying over things you cannot control.

The last session (2:29 minutes into the video) is Technology Assistance.  Here’s a list of useful online services, web tools and apps recommended in this sesson:

– PetChatz: literally a button intended for pets to initiate a video conference with you.  Easiest way for those with cognitive issues to contact you, too!

– Evernote: A searchable digital journal, good for taking medical notes, keeping digital images (ID & insurance cards, etc.)

– EstateMap & EverPlan: both let you store documents on an electronic device

– PlanYourLifeSpan: keeps important information handy & has answers to critical questions, like hospital discharge options

– CaringBridge & CareCentral: websites to keep family & friends up to date; may include calendaring for volunteers

– Lively Safety Watch: a combination of wearable and remote monitors around the house (shower, pill box, refrigerator, etc.) so you can know whether a person is active and getting activities of daily living accomplished.

– Care.com (getting too big to navigate), JoinHonor (California), BookJane (Toronto & expanding): Online, on demand care help.  Good for respite.

– CariLoop: Online expert advice ($300/year) including a personal, unlimited online geriatric care manager, family video conferencing, online document storage.

– WorthFM: savings & investment for and by women with step-by-step guides for all things money.  Fee based.

– HelloAlfred: online platform to hire someone to run errands for weekly fee

– YogaGlow: exercise app searchable by time available, proficiency level, type of exercise.  Monthly fee.

– Aging2.0: a global innovation platform to advance technology for an aging population.  Tell them online what you think is needed for aging people.

If you are a working long-term caregiver, there are some other sessions that do address balancing responsibilities during caregiving years.  Because almost all the panelists quit the type of work they were doing when caregiving became an issue, and started businesses that directly relate to caregiving, they don’t give much advice to keeping a job you love or advancing your career goals throughout a long-term caregiving journey.

“The terrorist inside my husband’s brain”

In the last couple of days, lots of friends (who remember my connection with Lewy Body Dementia) and a very long-time LBD caregiver support group member have emailed me news of Susan Schneider’s editorial.  Ms. Schneider is the widow of Robin Williams.  Robin Williams was diagnosed during life with Parkinson’s Disease.  She suggests he didn’t really believe the diagnosis.  He wanted to know if he had Alzheimer’s, dementia, or schizophrenia.  Upon brain autopsy, it was found he had Lewy Body Dementia.

Note that Mr. Williams’s brain was not donated for research but autopsied.  Of course Brain Support Network encourages brain donation as that way the brain tissue is preserved for future research.

In describing the disorder that Mr. Williams had, Ms. Schneider uses the term “Lewy body disease.”  As she notes in the editorial, technically “Lewy body disease” is a term that includes Parkinson’s Disease.  PD is the most common Lewy body disease.  When she indicates that 1.5 million Americans suffer from Lewy body disease, this number includes the one million people suffering from PD.

Ms. Schneider’s editorial in the journal Neurology notes that Robin Williams suffered from delusions, extreme anxiety, fear, memory problems, and many other non-motor symptoms.  He never reported having hallucinations but she believes he must’ve had them.  And she believes he was keeping other symptoms to himself as well.

She reports that the “loss of memory and inability to control his anxiety was devastating to him.”  It seems that she regretted giving Mr. Williams the antipsychotic prescribed to him for a panic attack.  She learned later that those with LBD can be extremely sensitive to medication; indeed, Mr. Williams’s reactions to medication were unpredictable.

In the editorial, Ms. Schneider says:  “In early May, …he came home from Vancouver—like a 747 airplane coming in with no landing gear. I have since learned that people with LBD who are highly intelligent may appear to be okay for longer initially, but then, it is as though the dam suddenly breaks and they cannot hold it back anymore. … I will never know the true depth of his suffering, nor just how hard he was fighting. … Robin was losing his mind and he was aware of it. Can you imagine the pain he felt as he experienced himself disintegrating? And not from something he would ever know the name of, or understand? Neither he, nor anyone could stop it—no amount of intelligence or love could hold it  back.”

She points out that if Mr. Williams had been given an accurate diagnosis during life, perhaps she would have been comforted with that knowledge:  “How I wish he could have known why he was struggling, that it was not a weakness in his heart, spirit, or character.”

But, then she asks if a diagnosis during life would’ve made a difference.  She says: “But would having a diagnosis while he was alive really have made a difference when there is no cure? We will never know the answer to this. I am not convinced that the knowledge would have done much more than prolong Robin’s agony while he would surely become one of the most famous test subjects of new medicines and ongoing medical trials. Even if we experienced some level of comfort in knowing the name, and fleeting hope from temporary comfort with medications, the terrorist was still going to kill him. There is no cure and Robin’s steep and rapid decline was assured.”

Ms. Schneider’s editorial is written for neurologists and researchers, and was published in the journal Neurology.  You can find her lengthy but wonderful editorial here:


The terrorist inside my husband’s brain
Susan Schneider Williams, BFA
September 27, 2016

You can find a good Huffington Post article here:


And you can find a good Washington Post article here:



It can take two to three years to recover from bereavement

Though this article focuses on losing a spouse, I think the information applies to adult children losing a parent as well.  Bottom line from the research being reported on in this article is that it can take two or three years to recover from bereavement.  In our local support group, this is what we’ve generally seen as well.

This recent New York Times article addresses new research that calls into question the notion that “after a brief period of sometimes intense bereavement, the vast majority of surviving spouses adjust well, returning to their previous work, daily routines and prior state of contentment within a few months to a year – a psychological outcome referred to as resilience.”

The new research suggests:  “Scratch the surface and you’re likely to find that the surviving spouse who seems happy and well adjusted may have considerable difficulties that are not apparent to a casual observer. … [It] can take two to three years or even longer for some to recover from bereavement [and return] to their pre-loss levels of functioning.”

Two Arizona-based psychologists used data gathered over 13 years in Australia.  During the 13-year study, 421 participants lost a spouse.  As the article notes, “Of the entire group, only 8 percent of the bereaved individuals were in good shape for all five indicators of resilience studied, while 20 percent were not resilient in any of them.”

The psychologists “described three factors that influenced overall resilience:

1) Reliable comfort – having someone to confide in or lean on in times of trouble, and being able to get help from other people when needed;

2) Social connectedness – whether their physical health or emotional problems interfered with social activities like visiting friends and relatives and interacting socially with neighbors or groups, and

3) Daily functioning – having difficulties with their normal activities because of emotional problems like depression or anxiety.”

The researcher found that what helped the bereaved spouses the most “was remaining socially connected and engaged in the usual activities of everyday life and knowing where they could turn for help and comfort and receiving support when they needed it.”

Here’s a link to the NYT article:


Personal Health
When a Spouse Dies, Resilience Can Be Uneven
New York Times
By Jane E. Brody
Sept. 26, 2016


Family-centered approach to health care

Judith Graham writes a “Navigating Aging” column for Kaiser Health News.  Last Thursday’s column is based on a report on family caregiving from the National Academies of Sciences, Engineering and Medicine.

The chair of the panel authored the report says:  “Caregivers are, on the one hand, heavily relied upon but on the other hand overlooked.”  So true!

The panel calls for a family-centered approach to health care that recognizes the important contributions of family caregivers.  You can find the report “Families Caring for an Aging America” here:


Last Thursday’s “Navigating Aging” column details six recommendations for our health care system — from the point of view of family caregivers — that are extrapolated from the report’s findings.  Ms. Graham describes these as a “practical to-do list for family caregivers”:

1- Your identity needs to be documented in your loved one’s medical records.
2- Your capacity to provide care to a loved one should be assessed.
3- Your capacity to provide care should be incorporated into your loved one’s care plan.
4- You should get training in medical tasks for which you’ll be responsible.
5- You should be connected with community resources that can be of help.
6- You should be given access to medical records and information.

You can find the column about the to-do list here:


Probably this is enough for most of you…