Results from AbbVie phase 1 study of tau antibodies in PSP

At the recent Alzheimer’s Association International Conference, reports were given on phase 1 trials of tau antibodies. Tau is the protein involved in Alzheimer’s, progressive supranuclear palsy, and corticobasal degeneration. Phase 1 studies are focused on safety, not efficacy.

Alzforum posted a summary over the weekend on this tau research that involved PSP volunteers. Basically, the experimental drug seemed safe, and AbbVie is proceeding to a phase 2 trial in PSP. UCSF is one of the trial sites.

You will hear plenty more about this research is you attend our October 28th PSP/CBD Research Update and Family Conference in the SF Bay Area. Registration will open soon. We are hoping that AbbVie will sponsor part of our conference. Keep your fingers crossed!

Here’s a link to the Alzforum summary about this PSP research:

www.alzforum.org/news/conference-coverage/high-dose-av-and-tau-immunotherapies-complete-initial-safety-tests

High-Dose Aβ and Tau Immunotherapies Complete Initial Safety Tests
Series – Alzheimer’s Association International Conference 2017
27 Aug 2017
Alzforum

Robin

 

The need to distinguish between Alzheimer’s and other dementias

This is a long article in a recent LA Times about whether it’s important to distinguish between Alzheimer’s and other forms of dementia. Understandably, the focus is still on Alzheimer’s Disease.

Here are some excerpts:

* “Alzheimer’s disease is the most feared and most common form of dementia, accounting for between 60% and 80% of all dementia cases diagnosed. But at least seven other forms of dementia, and dementia linked to the movement disorder Parkinson’s disease, can cause loss of memory, reasoning, judgment and the ability to speak, comprehend and care for oneself.”

* “Doctors and insurers, including the federal government, which administers Medicare, are asking some variants of the same questions: If an effective test, which costs between $3,000 and $5,000 a shot, can diagnose dementia early, and distinguish Alzheimer’s from other forms of dementia, should it be recommended to patients with cognitive concerns and routinely covered by their insurance? Would it make patients’ lives better, or lower the cost of their care?”

* “At the Alzheimer’s Assn. International Conference in London last week, researchers reported their preliminary findings from a trial that is testing the impact of diagnostic testing for Alzheimer’s disease on nearly 19,000 Medicare beneficiaries … with a diagnosis of either ‘mild cognitive impairment’ or atypical dementia. The study … set out to find out whether knowing — getting the costly test that would offer either confirmation or reprieve — would change the way that patients with cognitive troubles are treated, or the way that they plan their lives. The preliminary results suggested it did. After getting the results of a PET brain scan to detect and measure amyloid deposits, which are the key hallmark of Alzheimer’s disease, roughly two-thirds of the subjects saw their medication regimens changed or were counseled differently by their doctors about what to expect. That new information may have guided family caregivers in planning their own futures, or prodded patients to make financial decisions and power-of-attorney assignments sooner. Some who learned that they did not have Alzheimer’s discontinued medications that can have unpleasant side effects. Others learned they do have Alzheimer’s and decided to enroll in clinical trials that will test new drugs.”

* “A second study presented in London analyzed data from several studies, and found that in a large population of research participants with cognitive concerns, brain amyloid PET scans led to a change in diagnosis in approximately 20% of cases.”

* “To the estimated 16 million Americans living with some form of cognitive impairment, telling the difference could make a significant difference. Dementia forms with different origins progress differently (or sometimes not at all). They respond best to different medications, and will come to require different levels of care and treatment. Some (though not Alzheimer’s) can even be reversed with treatment. Being able to distinguish which form of dementia a patient has should help doctors and caregivers to make better choices.”

Here’s a link to the full article:

www.latimes.com/science/sciencenow/la-sci-sn-alzheimers-transcranial-magnetic-stimulation-20170726-story.html

Science Now
Is it Alzheimer’s or another dementia form? Why doctors need to distinguish and how they might do so
by Melissa Healy
LA Times
July 27, 2017

Robin

 

‘Mom, I didn’t steal your dentures’: Coping when dementia turns to delusion

What a wonderful title for a newspaper article!

This article is about the hallucinations and delusions occurring in the context of dementia. The article specifically mentions Lewy body dementia but note that hallucinations and delusions can occur in moderate to severe Alzheimer’s Disease. (As you may know, the ONLY way at present to confirm a diagnosis is through brain donation. Let Brain Support Network help you make those advance arrangements for your loved one.)

In the article, a nurse gives four tips for managing problems:

* Maintaining social contact
* Good sleep hygiene
* Music to soothe agitation
* Providing choice

Here’s a link to the article:

www.philly.com/philly/health/health-news/mom-i-didnt-steal-coping-when-dementia-turns-to-delusion-alzheimers-psychosis-depression-20170709.html

Health
‘Mom, I didn’t steal your dentures’: Coping when dementia turns to delusion
by Stacey Burling, Staff Writer
Updated: July 6, 2017 — 11:02 am EDT
The Philadelphia Inquirer

Robin

 

Newspaper article on risk of antipsychotics in Lewy body dementia

This is a good article from a UK newspaper about the importance of proper diagnosis of dementia — Alzheimers, Lewy body dementia, or something else — because of the dangers of antipsychotics in LBD.

That being said, many in our local LBD caregiver support group do find value in atypical antipsychotics.

Here’s a link to the article:

www.independent.co.uk/news/health/lewy-body-dementia-prescription-antipsychotics-thousand-risk-injury-death-drugs-treatment-alzheimers-a7827431.html

Lewy body dementia: Thousands ‘at risk of injury or death’ due to inappropriate prescription of antipsychotics
Prescription of these drugs often worsens symptoms and has been found to increase the risk of death fourfold
Katie Forster, Health Correspondent
Thursday 6 July 2017 11:58 BST
The Independent (UK)

Robin

“How to Choose a Dementia Care Facility. Avoid My Mistakes.”

This is a very helpful article about choosing a dementia care facility.  The author is North Carolina-based Donna Plunkett St. Clair, whose husband was diagnosed with dementia in 2010 at age 59 and then with Lewy Body Dementia (LBD) in 2015 at age 65.  Donna shares the mistakes she made in choosing the wrong care facility…twice.

Here are the ten lessons Donna learned:

1.  Start investigating potential facilities NOW.
2.  Learn how your loved one’s care will change as he/she declines.
3.  Learn how “problems behaviors” are defined and ask about examples of what might lead to a resident being forced to leave the facility.
4.  Know what you can afford.
5.  Assess if the facility is using innovative designs.
6.  Ask if the resident can safely go outside.
7.  Ask about safety.
8.  Inquire about staffing levels, activities, and supervision for holidays, evenings, and weekends.
9.  Ask if residents are encouraged to stay hydrated, and are offered second helpings and snacks.
10.  Check service levels and quality when the facility least expects you.

These lessons are detailed in the article here:

www.lewybodydementia.ca/dementia-care-facility-choice-avoid-mistakes/

How to Choose a Dementia Care Facility. Avoid My Mistakes.
By Donna Plunkett St. Clair
Posted to Lewy Body Dementia Canada
May 29, 2016

Robin

 

“What to Do When Loved Ones Won’t Admit Their Memory Loss” (WSJ)

This post may be of interest to those dealing with dementia and the person with dementia refuses to see a doctor or is unable to see his/her own dementia.

The Wall Street Journal (wsj.com) isn’t a newspaper I often read but I do like the articles written by Dr. Marc Agronin, a geriatric psychiatrist. This article in last week’s paper is about what “to do when loved ones won’t admit their memory loss.”

Here’s a short excerpt:

“This denial of illness itself is a telltale sign of an evolving dementia such as Alzheimer’s disease, in which a person’s insight is often an early casualty. Anosognosia is the formal medical term for this condition, and it is also seen after certain types of strokes. It can also be fueled by delusional thinking, depression, mania, or the effects of medications or other substances. Such denial can lead to physical, mental, financial or legal harm when these individuals with diminished or distorted capabilities refuse necessary evaluations and treatments, or insist on managing their own finances or engaging in risky behaviors such as driving.”

Here’s a link to the full article:

blogs.wsj.com/experts/2017/06/29/what-to-do-when-loved-ones-wont-admit-their-memory-loss/

The Experts | Health
What to Do When Loved Ones Won’t Admit Their Memory Loss
By Marc Agronin
Jun 29, 2017 10:30 am ET
The Wall Street Journal

Robin

“Understanding Dementia” – online course begins July 24th

“Understanding Dementia” is an online university course about the latest in dementia research and care. This free 9-week course begins July 24th, 2017, and is open to anyone. It’s offered by the University of Tasmania (Australia). There’s no info as to what types of dementia will be covered. Presumably the course will include at least the big four dementias – Alzheimer’s, vascular, Lewy body, and frontotemporal. Enrollment ends on August 18th. See:

mooc.utas.edu.au/courses/understanding-dementia-2017-06

If anyone attends, please take notes and share what you’ve learned!

Robin

 

“Anti-Tau Drugs for PSP Move into Phase II”

There’s not much new here from this report from last week’s Movement Disorder Society conference in Vancouver.  This report focuses on two anti-tau drugs being studied in PSP — one from AbbVie and one from Bristol-Myers Squibb.  The BMS drug was recently licensed to Biogen.  Both drugs proved safe in phase I studies, and both have moved into phase II trials.

Tau is the protein involved in PSP and CBD.  It’s one of two proteins involved in Alzheimer’s.

Here’s a link to the report:  (you have to register — no charge to do so — at Medpage Today to read the article)

https://www.medpagetoday.com/meetingcoverage/mds/65883

Meeting Coverage > MDS
Anti-Tau Drugs for PSP Move into Phase II
But phase I study of one agent pulled from presentation
by Kristina Fiore, Deputy Managing Editor, MedPage Today
June 08, 2017

Lewy Body Dementia Info on Dementia Aide (website)

Dementia Aide, a relatively new website (dementiaaide.com), is focused on selling what it calls dementia-related products.  While a few things such as t-shirts are disorder-specific, most of the products are caregiving items.  They have pages on their website for Alzheimer’s Disease (AD), frontotemporal dementia, vascular dementia, and Lewy body dementia (LBD).

The LBD section, written in September 2016, won’t be added to our list of “Top Resources” but it’s worth checking out.  They seem to have pieced together information from lots of different resources (not always giving attribution every place they could.)  For example, the chart on the difference between LBD, Parkinson’s Disease (PD), and Alzheimer’s is straight from the Lewy Body Dementia Association but this is only pointed out in one place (not everywhere the chart is).

You might check out their infographic on what they say are the four stages of LBD (on the symptoms page).

The only obvious error I saw was that they don’t have an accurate description of “Lewy body dementia” within the Lewy body disease family.  They show Lewy body dementia is the same thing as Dementia with Lewy Body.  Actually, Lewy Body Dementia is an umbrella term that refers to both Dementia with Lewy Bodies and Parkinson’s Disease Dementia.

Here’s a link to the LBD section:

www.dementiaaide.com/pages/lewy-body-dementia

Robin

Reversal of cognitive decline in ten patients with Alzheimer’s or mild cognitive impairment

There’s an interesting article on Quartz.com from a couple of weeks ago (first published on Aeon.com) about a study done at UCLA where they “treated” ten people with Alzheimer’s Disease or mild cognitive impairment (MCI) with “different lifestyle modifications to optimize metabolic parameters—such as inflammation and insulin resistance—that are associated” with AD.  These modifications, called the MEND protocol (metabolic enhancement for neurodegeneration), included diet change, exercise, stress management, and sleep improvement.  The most common “side effect” was weight loss.

According to the author:  “What they found was striking. Although the size of the study was small, every participant demonstrated such marked improvement that almost all were found to be in the normal range on testing for memory and cognition by the study’s end. Functionally, this amounts to a cure.”

Here’s a link to the research paper titled “Reversal of cognitive decline in Alzheimer’s disease,” from the journal “Aging,” published June 12, 2016:

www.aging-us.com/article/100981/text

According to the research paper:  “It is noteworthy that these patients met criteria for Alzheimer’s disease or MCI prior to treatment, but failed to meet criteria for either Alzheimer’s disease or MCI following treatment. …[Discontinuation] of the protocol was associated with cognitive decline (here, in patient 1).”

Here’s a link to the Aeon/Quartz article:

qz.com/977133/a-ucla-study-shows-there-could-be-a-cure-for-alzheimers-disease/

AWAKENINGS
What happened when Alzheimer’s patients were treated for the diseases we actually have cures for
Written by Clayton M. Dalton, Medical resident, Massachusetts General Hospital
May 05, 2017
originally published at Aeon

Happy reading!

Robin