Monthly Archives: February 2016

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

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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”

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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

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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

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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”

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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