“The Differential Diagnosis of Dementia With Lewy Bodies” (article for neurologists)

Neurology Advisor is a publication for neurologists and other healthcare professionals in the field of neurology. This is an article from July 2016 on the differential diagnosis of Dementia with Lewy Bodies (DLB), described as the “most misdiagnosed form of dementia.”

Given Brain Support Network’s involvement with brain donation, I would say that DLB is also the most over-diagnosed form of dementia. We don’t often see DLB confirmed upon brain donation. (Part of the confusion is that DLB frequently co-occurs with Alzheimer’s Disease. Plus, Alzheimer’s Disease can have parkinsonism and hallucinations as late-stage symptoms.)

This short overview of DLB in Neurology Advisor addresses symptoms, pathology, appropriate treatment, advances in diagnosis, and working with what’s available.  See:


When It’s Not Alzheimer’s: The Differential Diagnosis of Dementia With Lewy Bodies
Tori Rodriguez, MA, LPC
Neurology Advisor
July 27, 2016



“And how are you (the caregiver) doing?”

A member of the BSN support group directed me to an article in the Los Angeles Times explaining one view of the value of caregiver support groups. The article addresses caregiver stress and topics discussed at support group meetings. The reporter interviews Patti Davis, daughter of Ronald Reagan.  Reagan was diagnosed with Alzheimer’s disease. Though this article focuses on Alzheimer’s caregivers, very little of the information is limited to the Alzheimer’s world.

See www.latimes.com/health/la-he-patti-davis-alzheimers-support-20160416-story.html

You’re taking care of someone with Alzheimer’s, but who is taking care of you?
by Rene Lynch
April 16, 2016
Los Angeles Times

Here’s one short excerpt:  “Caregiver stress is a very real thing. … The caregivers are the ones that worry about the future and worry about the past and worry about the present. They’re constantly worrying about finances, what is going to happen next, it never lets up. But they feel like, ‘I don’t have the disease, I’m not entitled to the attention.’ They start to feel less important, less significant. On an airplane, when they give you the lecture about the oxygen mask, you’re told to put on your own mask first before you help a young child or the elderly or the disabled. And I use that analogy a lot. Caregivers have to take care of themselves first. They are entitled to have their feelings understood and nurtured and discussed.


“What I wish someone had told me in the beginning” (from Alzheimer’s daughter)

This email will be of most interest to caregivers.

As you might imagine, I scour the online support groups when I get a chance, looking for good articles or tips to share.  I saw this post made last week by a woman whose father has Alzheimer’s, and a follow-on post by a woman whose mother has Alzheimer’s.  The post is titled “what I wish someone had told me in the beginning.”  Though I found this on an Alzheimer’s-focused online support group, I think several of the suggestions are applicable to those in the Brain Support Network group.


“What I wish someone had told me in the beginning”
Posted by Sharon909 on AlzConnected.org’s Caregivers Forum
Wednesday, June 8, 2016

1) Make sure SOMEONE goes with your loved one to all doctor appointments. My father would ‘forget’ medication changes or instructions before he left the room, and then argue with me about it.

2) Make sure to log all of their medication, what they are for, how they are spelled, and what the dosage is. Put it somewhere where it can be found in case there is an emergency and paramedics need the info. Keep a copy for yourself in case you have to answer questions by phone. People with this disease tend to ‘hide’ their medications and when there is an emergency there wont be time to search the house for the bottles. My father had duplicate medications and was taking brand and generic of the same drug and ended up in the ER several times before I realized why.

3) Make sure to have the doctor notify the MVA [motor vehicle authority]. They will schedule your loved one for a re-test. If they fail they will revoke their license. Its scary when they get lost driving to the store or forget the rules of the road. And it helps for the government to be the bad guy, and not you.

4) Find an Elder Law Attorney. Take your loved ones to visit them while you are with them. Have a power of attorney done (making sure it gives you all the powers to gift funds and act on their behalf on all matters! Mine is a dozen pages long!), advanced medical directive, DNR, etc.

5) Have the attorney review their financial status. If at ANY point they may have to file for medicaid, the attorney can help transfer assets into a family account now, to protect it from being seized in the future.

6) Have your family discuss caregivers now. The further along the disease progresses, the less agreeable they will be to letting some stranger in the house to help with cooking, cleaning, driving, errands, medication management, etc. Even if you only start with 3 hours a day, one day a week, try to get something in place. I had to tell the caregiver to pretend they were a neighbor coming to visit. They sat on the porch and just talked for a few hours to chat and report back on anything that seemed alarming.

7) Have copies made of EVERYTHING in their wallet.

Order a duplicate license, SSN card, insurance cards, credit cards, etc. As the disease progresses, they will HIDE their stuff and then lose it. They will accuse everyone of stealing it. But you will need their ID and insurance cards for everything so its best to keep it safe. I let my father keep expired bank cards, empty gift cards, a checkbook to an old closed account, and his license and insurance card. But when it was time to go somewhere, I knew I had the right stuff.

9) Start purchasing items to secure the thermostat (my father would have the A/C and the furnace on at the same time). Get an ‘easy’ remote control (my father would press every damn button and we would spend hours trying to get the TV right again). Have the hot water tank temperature adjusted so they don’t scald themselves (my father wrote on the wall AND on the sink with red sharpie marker “hot” and ‘cold”. So don’t let her have any sharpies! lol.)

10) Have them agree to put any fine jewelry or valuables in a safe deposit box, or a fire safe (with extra keys) or distribute to family members now. My father hid his cufflinks in his shoes and his USMC medals in the cereal box. We almost threw them away!!

11) If they have a pet, get autodispensers for food and water.

12) Put everything on a surge protector and remove questionable appliances from the house. My father had a house fire because he plugged in an old space heater and forgot to turn it off.

13) Go around the house and take pictures of everything. If there is a robbery or fire, you will more easily submit a claim.

14) Notify the neighbors, the bank manager, the sherriff’s department, the pharmacy manager, the accountant, and anyone else your loved one may call to let them know what is going on. My father called 911 for everything and the pharmacy manager would call me whenever he tried to refill a prescription on his own.

15) Remove all firearms from the house. This seems obvious but when your loved one is military, its not an easy task. My father called the police and told them I stole his guns, but when I explained his dementia they thanked me for being safe.

Comment Posted by Jo C.

I would also add that it is best to find their birth certificates, marriage certificate, any divorce papers from prior marriages if there were any; any military papers including their discharge papers and the deed to their house, registration to any vehicles, insurance plan certificates including homeowners insurance policy; long term care insurance policies burial insurance polices, bank statements, original Trust documents; Wills; DPOAs, HIPPA Waivers; etc,

If there is no diver’s license, take their State ID; if they do not have a State ID; have them go to DMV and get one. NOTE: In some areas, if the person is unable to leave the home or if it is a taxing effort for them, DMV will send someone out to the house to take the photo and have papers filled out. Great service and used it for my parents. In our state, Medicaid wanted either a driver’s license copy or a photo state ID.

I also had as much as I could in their bills put to automatic debit including insurance policy payments so they would not go lapsing. I eventually took over all finances and bill paying, but we had to start low and go slow.

Excerpts from “Ten Thousand Joys, Ten Thousand Sorrows”

This email may be of interest to caregivers.

Many people over the years have recommended the book “Ten Thousand Joys, Ten Thousand Sorrows” by Olivia Ames Hoblitzelle. The subtitle is “A Couple’s Journey through Alzheimer’s.” Recently one of our longtime CBD group members, Charmaine, put together some excerpts from the book that resonated with her during her journey with her late husband Eli. I’ve copied those excerpts below.


Excerpts from
Ten Thousand Joys, Ten Thousand Sorrows: A Couple’s Journey through Alzheimer’s
by Olivia Ames Hoblitzelle

I found myself keeping so busy, that I couldn’t feel what was really happening.

The threads of connection are pulling apart, as we slowly began to disengage from each other, and he was slowly disconnecting from the world around him.

The tug of pain would come unexpectedly, which felt like being ambushed from the unknown.

It was sometimes hard to keep grief from spiraling into depression.

I was aware of his dependence upon me. I was his grounding in a groundless reality. I was the word finger, the one who intuited the lost train of thought, who held the structure of his days. No wonder his dependence felt so heavy. After years of sharing together, I felt he was tugging at the core of my being, and I could feel his vulnerability.

I feel distracted, preoccupied, irritable, forgetful, like living in another state of mind, sometimes feeling very present, but other times, disconnected, distant, and adrift.

Our lives are changing and our relationship is changing. Our relationship, even with the love, is disengaging slowly from its old form. We increasingly lived in worlds that were drifting apart.

I realized that I can’t do it all, and I need helpers. I am totally with him, even when I leave sometimes to lead my own life.

I often felt burdened by the responsibility of being the caregiver on this journey. Gradually, a deep level of acceptance replaced doubts and struggles. I was committed to live the years as consciously and lovingly as possible. There were cycles of discouragement, fatigue, determination, and then acceptance, in spite of the challenges. I knew that along with the most difficult harrowing times, there would be lessons and some hidden treasures.

I was being forced to grow in new ways. I needed to look beyond the outer appearance of what was happening and see what lessons were hidden in the hard times. I deepened in love in ways I couldn’t have imagined. I learned that compassion for myself, and for others could embrace anything, even death.

Sometimes I felt as if my heart was breaking open with my feelings for him. Along with the grief and challenges, unseen blessings were woven through the complexities. The love kept deepening with the adversity, and that was the gift of the journey.

Our experiences are always teaching us, as incentives for growth. It can help to develop peace and strength. If you are peaceful, you can have strength.

How is it possible to “feel” in the midst of difficult circumstances? This means the level of reality is a dual level. Relative reality is the world, as we know it. Absolute reality is unconditioned, free. We have glimpses of that in the presence of death.

Suffering comes from resisting the constant flux of experience. Mindfulness can lead us to a peacefulness that is not dependent upon our experience. Willingness to see deeply, without resistance, the truth of the moment, in the absence of our habitual triggers and reactive hooks to the challenges of life can help us to more wisely decide how to act, and when to take a stand.

Aging is not the demise of your body, but the harvest of your soul. It can be a time of great strength.

Scientific American article on PSP research as a “backdoor” to Alzheimer’s

Very longtime group member Sam M. emailed this to me yesterday. It’s a nice article in yesterday’s “Scientific American” about how PSP is providing a backdoor to Alzheimer’s research.

Both PSP and Alzheimer’s are tauopathies but PSP is a “pure” tauopathy. So, if we can solve the problem of tau in PSP, we can solve the tau problem in Alzheimer’s. Another reason PSP is of interest is because PSP’s genetic link to tau is stronger than Alzheimer’s. Further, somewhat sadly, the decline in PSP is faster than the decline in Alzheimer’s, so researchers can study a drug more quickly in PSP.

Note that researchers are interested in enrolling Richardson’s Syndrome patients. This is the type of PSP where the tau load is the heaviest and brain atrophy is the fastest.

IMPORTANT – we know about PSP’s genetic link to tau and all about Richardson’s Syndrome because of brain donation. Indeed, Sam M.’s partner donated her brain as have many, many of our group members.

These ideas have been around now for several years but it’s nice to see coverage of it in a great magazine like “Scientific American.”

Scientific American: Neurological Health
“Obscure Disease May Offer Backdoor to New Treatments for Alzheimer’s and Other Killers”
By Esther Landhuis on June 8, 2016
Progressive supranuclear palsy has become a test bed for therapies aimed at the tau protein thought to be behind many devastating neurodegenerative disorders



Advice for dementia caregivers

Though this New York Times article is title “Advice for Alzheimer’s Caregivers,” the article applies to caregiving for anyone with dementia, not just Alzheimer’s Disease (AD).

A key excerpt from the article on caregiving:

“Research conducted at NYU Langone found that the emotional and practical support received from family and friends led to significantly fewer symptoms of depression and stress and better physical health of the caregivers. The study also found that those caregivers were able to keep their relatives with dementia at home for a year and a half longer than those who did not receive support.”

Please attend our caregiver-only support group meetings, find other support group meetings (for Alzheimer’s or Parkinson’s caregivers), or find an online support group! Let me know if you need any leads.

This article is part of a group of articles in this week’s NYT about Alzheimer’s. One very long article, “Fraying at the Edges,” is about Geri Taylor, who has AD, and her husband Jim. It’s a fascinating look at someone coping with an AD diagnosis and trying to live life to the fullest. There’s a link to that article from the online version of the caregiver article.


Advice for Alzheimer’s Caregivers
By Amy Zerba
New York Times
May 2, 2016


Webinar: “Pathogenic Protein Spread? Let’s Think Again”

The background information (www.alzforum.org/webinars/webinar-pathogenic-protein-spread-lets-think-again) alone on this webinar is challenging reading so I suspect the webinar will be the same, but it’s an important topic.  Do multiple system atrophy, Parkinson’s, Alzheimer’s, and frontotemporal dementias spread in a manner similar to prion diseases such as Creutzfeldt-Jakob Disease?

And, if you are willing to register your email address with nature.com, find a link to the Nature Reviews Neuroscience journal article on the pathogenic hypothesis here:  www.nature.com/nrn/journal/v17/n4/full/nrn.2016.13.html

[The webinar was hosted by Alzforum on Friday, April 8, at 9am California time.  A recording is available on-line at www.alzforum.org/webinars/webinar-pathogenic-protein-spread-lets-think-again.  Unfortunately, the audio quality is poor.]


More on tau imaging research

See http://www.alzforum.org/news/conference-coverage/hai-researchers-explore-diagnostic-potential-tau-tracer

There was an important imaging conference in January 2016 in Florida, where tau imaging research was discussed.  Tau is the protein involved in PSP, CBD, Alzheimer’s, and a few other disorders.  The goal is to be able to use a PET scan with a chemical that binds to tau to help diagnose these disorders.  Unfortunately the news at the conference was not very positive when it comes to PSP and CBS/CBD.  As noted in the August 2015 email below, three chemicals are being investigated.  The news at the January conference is that one of these chemicals “falls short of distinguishing people with disease from normal healthy controls. … Researchers noted that while [the chemical] AV1451 seems to bind where one might expect in a given case of tauopathy, it falls short when it comes to being diagnostically useful.”

Quite a bit of this research with that particular chemical is happening at UCSF.  Keep reading if you want more details.


“Dementia and Alzheimer’s Caregiver Conference” – video available

Brain Support Network hosted a “Dementia and Alzheimer’s Caregiver Conference” in mid-November in Santa Rosa. A volunteer recorded the half-day conference and another volunteer created a YouTube playlist.  You can find the playlist here:


In particular, I’d like to highlight these four presentations:

* “Caring for a Family Member with Lewy Body Dementia” – by longtime LBD group member Helen Medsger  (13 minutes)

* “Coping with Behavior Change in Dementia” – by longtime BSN friend Laurie White, LCSW  (14 minutes)

* “Importance of Estate Planning” – by attorney Steven Goldberg  (9 minutes)

* “Parallels of Dementia and Improv” – by actor Mick Laugs  (31 minutes)

I don’t list Dr. Ali Atri’s presentation as a highlight mostly because I’ve heard so many neurologist presentations on Alzheimer’s and dementia.  But your ranking may be different!

Happy viewing,


Billionaire Richard Rainwater Dies with PSP

Local support group member Lynn forwarded me a link to this article about the death on Sunday of billionaire Richard Rainwater, who had PSP.  Several years ago Mr. Rainwater began the Tau Consortium, which funds PSP and tau research at UCSF among other places.  Tau is the protein involved in PSP and CBD.  It is also one of two proteins involved in Alzheimer’s Disease.

As part of the obituary in the Forth Worth Star-Telegram, there’s a 3-minute video from January 2015 featuring Mr. Rainwater’s son and Bruce Miller, MD, of UCSF’s Memory & Aging Center.  They note that the PSP research may also benefit Alzheimer’s Disease plus CTE, the disease that football players get.

Here’s a link to the obituary:


Fort Worth billionaire Richard Rainwater dies
by Judy Wiley
September 27, 2015