“The Many Faces of Dementia” to include 2-hour segment on DLB

I read about this four-week online course, “The Many Faces of Dementia,” on lesser-known dementia variants on AlzForum.  The course starts on March 14th.  The first week is devoted to familiar AD (Alzheimer’s Disease), second week is bvFTD (behavioral variant frontotemporal dementia), third week is DLB (dementia with Lewy bodies), and fourth week is PCA (posterior cortical atrophy).  That means the DLB week is March 28th.  The course is two hours per week.

According to the course’s organizer, FutureLearn, the course has these objectives:

“In this free online course you’ll discover some of the key issues in dementia care and research by exploring four less common forms of dementia through the eyes of people affected by the condition, and world-leading experts at UCL. We’ll show how research into the signs, stages, symptoms and causes of less common forms can bring us closer to the aim of defeating dementia.”

Here’s a description of week 3 on DLB:

“Week 3 – What if dementia makes you see things that aren’t there?
Some people with dementia experience hallucinations, and many describe fluctuations in their symptoms over time. These aspects are particularly clear in dementia with Lewy bodies, which you’ll learn about in Week 3.”

This addresses who should attend:

“The only requirement is an interest in dementia, its effects on people and the brain.  We hope that this course will be of particular interest to:
* Anyone who works with people diagnosed with dementia
* People who have a friend or family member who has dementia
* People in the early stages of the disease
* Students with an interest in learning more about dementia”

You can get some general background on the creation of the course here (AlzForum):

alzforum.org/news/community-news/coming-march-first-mooc-lesser-known-dementia-variants

And you can sign up for the free course here:

https://www.futurelearn.com/courses/faces-of-dementia

Please share whatever you learn!

Robin

“Caring for baby boomer parents while raising small children”

Nice article about caregiving in the sandwich generation.  See:  https://www.washingtonpost.com/lifestyle/how-to-cope-with-caring-for-baby-boomer-parents-while-raising-small-children/2016/02/16/5912f07a-ca9a-11e5-a7b2-5a2f824b02c9_story.html

Here are two excerpts:

* The term “sandwich generation” was coined in the 1980s to describe people who are squeezed between taking care of their children and their parents. Now, as members of the baby boom generation are entering their 70s, that sandwich is poised to become a footlong.

* “Caregivers are notorious for not doing self-care. They feel guilty for not being there,” said Anjana Chacko, a social worker who runs a pre-hospice program… “Having breaks and getting out and doing something fun for themselves is not frivolous. It’s self-care. It’s vital.”  Chacko said one client of hers was recently stressed out from the intensity of caring for a loved one.  “She says to me, ‘I do get a break — I go to the dry cleaner and the grocery.’ . . . I said, ‘Okay, we need to have a talk about what we consider a break.’ ”

Robin

Video of PSP Family

CurePSP is producing videos of families talking about various diseases.  In this case, Pierre Gervais and his family are interviewed in this 8-minute video.  Pierre has PSP.  The link is here:

https://vimeo.com/133471625

The video is a nice overview of symptoms.  Pierre talks about assisted suicide.

A couple of points were made about support:

* Living with this disease is about learning how to support it.

* We are desperate for support.

Too bad there’s nothing about when Pierre was diagnosed.  His MD (movement disorder specialist Nina Browner, MD, I believe) told him he has 6-9 years to live.  Sure seems that Pierre doesn’t have the classic form of PSP, Richardson’s Syndrome.

Do you think there’s value in sharing this with others?  I’m not sure…

Robin

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.

Robin

“Promise you’ll never put me in a nursing home”

This is a good article about the promise many families are asked to make: “Promise you’ll never put me in a nursing home.”    See http://washingtonpost.com/local/social-issues/promise-youll-never-put-me-in-a-nursing-home/2016/02/08/1ce8737c-cb62-11e5-a7b2-5a2f824b02c9_story.html

Here are some excerpts:

* To Bill Thomas, a geriatrician who is working to change American attitudes about old age, the promise is a red herring. “It’s actually the only thing we know how to do because we don’t have the actual language to say what we’re really asking: ‘Promise me you’ll protect my dignity, promise you’ll protect my privacy, promise to make sure I don’t live in pain.’

* Caregiving can take a severe financial toll, and studies have shown higher rates of depression, physical illnesses and mortality among family caregivers. And yet the impulse to keep a loved one at home is powerful.

* “It’s always best to not make promises you can’t keep or qualify,” [Gary Small, director of the Division of Geriatric Psychology at UCLA’s School of Medicine] said. “You could say, ‘Look, mom, I know you want to stay in your home, and we’re going to do whatever we can to keep you there, but . . . there could be things that you don’t anticipate.'”

* Talking it through early while everyone is still healthy can help. So can doctors or support groups, which can affirm when a move to a facility would be in everyone’s best interest.

* “The only thing he asked me to promise him was to not put him in a facility and walk away from him, and I have not done that,” she said.

Robin

“Why we missed the signs of my mom’s Lewy body dementia”

This article by Candy Schulman was published shortly after it was announced that Robin Williams had suffered from Lewy body dementia.  Ms. Schulman has published previously about her mother’s LBD, and I’ve shared a couple of those articles*.

I think Ms. Schulman’s January 2016 article is worth sharing because of its recognition that the diagnosis of LBD can only be confirmed upon brain autopsy and the information that her mother lived for at least 10 years with LBD.  Seems like a long time…

Here’s a link to the article published last month in Next Avenue:

www.nextavenue.org/why-we-missed-the-signs-of-my-moms-lewy-body-dementia/

Why We Missed the Signs of My Mom’s Lewy Body Dementia
Robin Williams also suffered from the disease, often misdiagnosed as Alzheimer’s
Next Avenue
By Candy Schulman
January 4, 2016

Robin

www.brainsupportnetwork.org/article-on-caring-for-a-mother-with-lbd-december-2014-washington-post/

Arkansas TV News Story About PSP

On a CBD-related online support group, someone from Arkansas posted about this local TV news story on PSP.  You can find a link to the five-minute video here:

www.arkansasmatters.com/news/local-news/progressive-supranuclear-palsy-learning-more-about-a-crippling-illness

Below, I’ve copied a transcript that covers most (but not all) of what is said in the video.  UAMS refers to University of Arkansas for Medical Sciences.

Robin

PS:

Progressive Supranuclear Palsy: Learning More About a Crippling Illness
by Bob Clausen
KARK 4 News
Published 02/04 2016 09:31PM

LITTLE ROCK, Ark. – Multiple Sclerosis, Parkinson’s, ALS, by now most are all familiar with those crippling illnesses. Another one some may not have heard of is PSP or Progressive Supranuclear Palsy.

There are about 20,000 cases in the US. What doctors know is that for some reason a protein in our brain begins to act erratically and starts killing off cells. Why? No one knows.

There is no known cause or cure, and anyone is at risk. It’s more common in people ages 50+. Many doctors have never heard of it, making it that much harder to treat and understand.

But doctors at UAMS are going head to head with PSP, and Arkansas is seeing its fair share of cases, said UAMS Neurologist Dr. Mark Pippenger.

“The prevalence in the United States is estimated at 7 in 100,000 people that have it. By that metric, with the population in central Arkansas, we should have maybe a dozen cases. But we are seeing more than that, so we have seen quite a few with the disease.”

For some, PSP can come out of the blue and hit like an anvil. Former Pine Bluff Mayor and State Senator Jerry Taylor found that out.

“You know, when I bumped my head that first time. I was just standing there, and then, my head was down against the floor. It’s just terrible. It’s a terrible disease.”

Taylor, a more than astute politician, is described by colleagues as being loyal and fearless.

Dealing with PSP now means getting around in a wheelchair and wearing a helmet to prevent head injuries because of falls.

“Yeah, balance, my balance is just terrible,” Taylor said.

His wife recalls the time when he struggled to drive out of a parking lot, confusing left and right and not understanding why. It went downhill from there.

“To watch somebody going from knowing everything, to doing everything, he was always really smart. Finances, he knew them. He got to where he could not add or subtract. It’s terrible.”

For the Taylors and others with PSP, knowing something is wrong, and knowing you need help becomes more troubling, especially when no one knows what you have. Taylor was finally diagnosed August 7, 2015.

“It comes on pretty quickly. I didn’t have any idea what it was.”

He’s not alone. Donna Anderson was in the prime of her life when everything changed.

“I used to play bridge and work in the yard, and I don’t do anything anymore,” said Anderson.

Donna and her husband were at a loss as to why she was having such a hard time doing everyday things, and so were doctors.

PSP patients can experience:

Loss of balance and muscle control
Problems with speech and swallowing
Memory loss
Hard time reasoning

“We saw 10 or 11 doctors, neurologists, two heart doctors, never got a clear answer to what was going on, until we went to UAMS.”

The problem with diagnosing it is the symptoms look like so many other things. One misdiagnoses is Parkinson’s. Doctors at UAMS say it is worse.

“Unlike Parkinson’s, unfortunately Progressive Supranuclear Palsy does lead to a decrease in life span. That’s another reason we need to stop it early to prevent it or slow it down if we can,” said Dr. Tuhin Virmani, Director of the UAMS Movement Disorders Program.

While a cure remains elusive, patients, caregivers and doctors are also trying to educate.

“We want the public to know, but we also want doctors to know,” said Linda Taylor, her husband echoing the sentiment.

Dr. Erica Petersen says the more people and physicians know about PSP, the better chance they can diagnose it early and better the odds of finding treatment while a cure is being sought.

“A family practice doctor may not see more than one of these PSP patients in his or her career. So being able to come to a university where someone sees these patients, one or two a week, means you are seeing a person with a degree of expertise.”

The protein involved is also linked to Alzheimer’s, doctors believe

Finding the mechanism that stops or at least slows the onset or progression of PSP may also lead to help for Alzheimer’s patients.

There are medical trials underway, and UAMS is playing a very active role.

Economic Burden Survey – Costs in Last 12 Months (PSP and CBD)

This email may be of interest to those who are currently caring for someone with PSP or CBD, or have cared for someone in the last 12 months.

The AFTD (Association for Frontotemporal Degeneration) launched an economic burden survey last week and they already have over 400 respondents.  Most of the respondents are from the “traditional” FTD community, which is the behavioral variant of FTD (frontotemporal dementia).  The AFTD has sent out a call for PSP and CBD caregivers to participate since “all forms of FTD present significant social and economic challenges.”

One of the US’s top researchers into the “economic burden of care” has put together this survey of the financial costs of all variants of FTD, including PSP and CBD.  The survey – which takes 45-60 minutes to complete – asks about medical, care, and legal costs within the last 12 months.  Only estimates are needed!  (Don’t start digging for receipts and bills!)  The AFTD intends to use the results to advocate for better services and secure additional research funding.

The economic burden survey is here:
https://tinyurl.com/FTDBURDEN

The survey website says:

“Most of the questions about expenses and financial challenges will ask you to recall information over the past 12 months.  While there may have been significant expenses or challenges that occurred prior to this, we want to provide a common frame of references for everyone that answers the survey. You do not need to find receipts or expense reports to answer the questions. Instead we ask that you make your most educated guess about the cost.”

“The survey should take about 45-60 minutes to complete. If you need to take a break, you can come back to complete the survey by clicking on the same link for up to 24 hours. If for some reason, you cannot make it back within 24 hours, you will have to start a new survey. There is a bar at the bottom of the page to show your progress.”

If you can share your experience with the researcher, thanks!  If you have questions about the survey, call the AFTD’s HelpLine at 866-507-7222.

Robin

Good, basic intro to dementia – definition, types, caregiver burden, etc.

This email might be of general interest since we are all probably interested in the topic of dementia.

http://stuffyoushouldknow.com/podcasts/how-dementia-works/

A family we are helping with brain donation shared a link to this podcast with me today.  This podcast is a good, basic introduction to dementia.  I wondered if this is useful resource for those with a dementia diagnosis (early stages) or for families just starting out on the dementia journey?  Lewy body dementia is addressed for about two minutes.  And “caregiver burden” is discussed towards the end.

Below, I’ve provided some notes I made while listening to the podcast.  Let me know your thoughts as to who would benefit from listening to this and what, if anything, you learned from it.

Robin

PS:

How Dementia Works
from “Stuff You Should Know”
Released November 4, 2015

After some chit-chat, this podcast sort of starts at 48:22.  We are told that:

* 5.3 million Americans have dementia
* $226 billion spent on healthcare for dementia in the US

45:07 – Good definition of dementia begins here, including terms such as memory loss, aphasia, apraxia, agnosia, and executive dysfunction.

There’s discussion of:

* Alzheimer’s:  60% of dementia cases; attacks episodic memory first; later affects judgment, personality, and speech

* vascular dementia:  20% of dementia cases; caused by single-infarct or multiple-infarcts

* Lewy body dementia:  5-15% of dementia cases; hallucinations; discovered in 1912; has both symptoms of Alzheimer’s and Parkinson’s.  38:06 – Lewy body dementia discussion begins here and goes on for about two minutes.

* frontotemporal dementia:  5% of dementia cases; affects personality, behavior, and language; onset between 40-75 years; used to be called Pick’s; apathy, no empathy, blunted emotions, risky behavior

* Huntington’s Disease:  uncontrolled movements, personality changes

* CJD:  one out of a million are affected in any given year; prions

* HIV dementia

* traumatic brain injury causing dementia

* reversible dementias:  vitamin deficiency; medications

Early diagnosis is important!  This point is made around 28:29.  These diseases are managed better and death is delayed by early diagnosis.

There’s discussion of the first appointment with a doctor.

At 15:31, there’s a discussion of “caregiver burden.”  Your risk of death as a woman increases 28% in the first year of your husband being diagnosed with dementia.  For a man, the increase is 22%.

A few things are incorrect:

* FTD isn’t 100% tau protein.  Only about half of the FTD cases involve tau.

* Dementia isn’t ALWAYS memory loss plus one other impairment.  Dementia is impairment in two domains.  One of those domains can be memory.

* MMSEs aren’t very effective at diagnosing Lewy Body Dementia or dementias other than Alzheimer’s.