Eight “cures” to reduce suffering and cost of dying (SJMN, 12-29-12)

Lisa Krieger has a wonderful series in the San Jose Mercury News on the cost of dying (mercurynews.com/cost-of-dying).  Local support group member Barbara, who was quoted in one of the earlier articles as a Lewy Body Dementia caregiver, sent me a link to the final article in the series.  It was published at the end of 2012.

Lisa Krieger says that

“Our conversation has taught us that, yes, there is a cure for the cost of dying in America. It will reduce suffering and expense…”

She lists eight “cures”:

Cure 1: Take charge of our deaths by putting wishes in writing

Cure 2: Involve entire communities in commitment to planning

Cure 3: Encourage doctors to talk more frankly about choices

Cure 4: Pay doctors to help patients decide what’s best for them

Cure 5: Avoid costly care that won’t prolong or improve life

Cure 6: Offer better comfort care to patients in their final days

Cure 7: Pay families to help at home instead of using hospitals

Cure 8: Broaden use of comfort care through Medicare, insurance

In Cure 1, the author points out that:

“While 82 percent of Californians say it is important to have end-of-life wishes in writing, only 23 percent of us have done so, according to a poll by the California HealthCare Foundation.”

Hopefully you’ve all — whether you have a neurological disorder or not — have completed an advance care directive!

In response to an earlier article in the series, local support group member Richard encouraged everyone to consider purchasing long-term care insurance as a way of covering some of the expenses of are. Caregivers may want to consider such insurance for themselves.

Here’s a link to the article about the eight “cures”:


Cost of Dying: Discovering a better way for final days
San Jose Mercury News
By Lisa M. Krieger 
Posted:   12/29/2012 04:00:00 PM PST
Updated:   01/04/2013 08:27:57 PM PST


Institute of Medicine – “Transforming End-of-Life Care”

Local support group member Maureen sent me this article from the January 11th San Jose Mercury News.  The Institute of Medicine, an arm of the National Academy of Sciences, is holding meetings on “transforming end-of-life care.”  According to the article’s author, the goal is to “review federal policy, financing and hospital practices in an effort to improve the end-of-life experience in America.”  Eventually, the IOM’s recommendations may become law or federal agency policies.

For the SJMN article, see:


National Institute of Medicine will recommend ways to improve end-of-life care
San Jose Mercury News
By Lisa M. Krieger 
Updated:   01/11/2013 07:04:11 PM PST

If you are interested in learning more about the hearings or
submitting comments (which will be made public), check out:



Bad News about Both PSP/CBD Experimental Trials in 2012

I wanted to be sure everyone saw the very bad news that came out in 2012:  the two experimental drug trials in PSP — Davunetide and Nypta.

Hopefully the search will continue for a medication that can slow the progression of PSP and CBD — both tauopathies.  And hopefully cures can eventually be found for these diseases.

Adam Boxer, MD, the neurologist at UCSF’s Memory & Aging Clinic and the principal investigator of the Davunetide trial, has spoken forcefully in the past about pharmaceutical companies using PSP — rather than Alzheimer’s Disease — as the testing ground for tau-modifying agents.  I hope the failure of Davunetide doesn’t mean that Dr. Boxer’s theory has been disproven.

A small number of people in our local support group participated in the Davunetide trial; UCSF was the lead institution.  (A total of 313 people participated worldwide.)  And a couple of our group members participated in the pilot trial of Davunetide done at UCSF in PSP, CBD, and FTD.  I don’t believe anyone in our group participated in the Nypta trial.  (UCLA was the nearest institution participating.)  I would like to thank those who participated.  Without their sacrifice, we would not have known whether this medication was effective or not.

Anecdotal evidence in at least one local participant suggested
Davunetide was effective.  I guess that was placebo effect?

The manufacturer of Davunetide, Allon Therapeutics, had a phone call with investors the day the results were announced in mid-December 2012. Janet Edmunson, the chair of CurePSP, listened to a recording of the call.  One point that she passed on — that was not in the press release — was that perhaps not enough of the medication was given. Would a higher dose work?  Allon said the results are being further analyzed to “determine if there is any evidence of an effect or explanation for the absence of an effect.”

Apparently, the bad news about the worldwide Nypta trial came out in early 2012.  UCLA was the nearest participating medical center.  I don’t think Dr. Boxer mentioned this failed trial at the October symposium.  Noscira, the manufacturer of Nypta (tideglusib), said that the experimental medication failed in PSP but a trial in Alzheimer’s Disease would continue in 2012.  No results of that have been announced yet.

This seems to be the path of most medical research — some steps
forward and lots of steps back (or sideways).  We’ll just have to keep hoping for a breakthrough as the researchers continue to plod away.

If you’d like to read the details on the bad news, check out:

Allon Therapeutics press release regarding Davunetide
Excerpt:  “The study had co-primary outcome measures: the Progressive Supranuclear Palsy Rating Scale (PSPRS), and the Schwab and England Activities of Daily Living (SEADL).  Data analysis failed to detect an effect on either the PSPRS or the SEADL.”

Noscira CEO letter regarding Nypta (tideglusib)


“3 Questions to Ask About Assisted Living Memory Care Communities”

This post will be of interest to those who may be looking at memory care facilities for their loved ones with dementia.  (This is the name given to care facilities that specialize in caring for those with dementia.  Since the most common dementia is Alzheimer’s Disease, and AD has prominent memory issues, these facilities use the word “memory care” rather than “dementia care.”)

Steven Russell, BSN’s treasurer, recently came across a column in the Huffington Post in December 2011 on three broad questions to ask memory care facilities:

1- how good is the quality of care?
2- how rich and individualized is the activity program?
3- how well-designed and maintained is the place?

For each broad question, there are many sub-questions provided.  The article was written by Marguerite Manteau-Rao, the Palo Alto-based social worker who is a long-time BSN friend.

Here’s a link to the article:


3 Questions to Ask About Assisted Living Memory Care Communities
by Marguerite Manteau-Rao, LCSW
Huffington Post
Posted 12/21/11




Contemplative Caregiving (NYT, 1-11-13)

This article is from a recent “New Old Age” blog in the New York Times.  It’s about contemplative caregiving — an approach advocated by Jennifer Block, who is a former director of the well-known Zen Hospice project in San Francisco.  Here are a few highlights from the short transcript provided by the NYT of the interview with Ms. Block:

“People are for the most part unprepared for caregiving. They’re either untrained or unable to trust their own instincts. They lack confidence as well as knowledge. By confidence, I mean understanding and accepting that we don’t know all the answers ­ what to do, how to fix things.”

“Also, we live in a fast-paced, demanding world that says don’t sit still — do something. But people receiving care often need most of all for us to spend time with them. When we do that, their mortality and our grief and our helplessness becomes closer to us and more apparent.”

“Another skill is to become aware of how much we receive as well as give in caregiving. Caregiving can be really gratifying. It’s an expression of our values and identity: the way we want the world to be. So, I try to teach people how this role benefits them. Such as learning what it’s like to be old. Or having a close, intimate relationship with an older parent for the first time in decades. It isn’t necessarily pleasant or easy. But the alternative is missing someone’s final chapter, and that can be a real loss.”

“I think every caregiver needs to have their own caregiver — a
therapist or a colleague or a friend, someone who is there for them and with whom they can unburden themselves.”

You can find the full NYT article here:


New Old Age: Caring and Coping
New York Times
Family Relationships
Taking a Zen Approach to Caregiving
By Judith Graham
January 11, 2013, 6:52 am

For further info, check out Ms. Block’s website (jenniferblock.org) and her new SF-based organization, Beyond Measure School for Contemplative Care (carebeyondmeasure.org).