2020 Brain Support Network Local Caregiver-only Support Group Meeting Dates

Since 2004 (16 years!), we have convened nine support group meetings each year for caregivers of those with Lewy body dementia (LBD), progressive supranuclear palsy (PSP), multiple system atrophy (MSA), corticobasal degeneration (CBD), and atypical parkinsonism. We meet by disorder though the PSP and CBD groups are usually together. Contact us if you’d like to be added to the meeting reminder email list.

The discussion is led by caregivers who have lost their family members to these disorders. In most cases, the family member donated his/her brain and the diagnosis has been confirmed. (Brain Support Network can assist your family in making brain donation arrangements.) Discussion leaders include:

  • LBD: Dianne, Sharon, Alexa, Anne, and Lynn
  • PSP: Cristina and JD
  • MSA: Candy, Barbara, Karen, Jan, and Doug
  • CBD: Dick, Mindy, and Mark

These caregiver-only support group meetings are held on Sundays from 5pm to 7pm. The dates for our 2020 meetings are:

  1. January 26
  2. March 15
  3. April 26
  4. June 7
  5. July 12
  6. August 23
  7. October 4
  8. November 8
  9. December 6

In selecting these dates, we have avoided as many cultural events, sporting events, and holidays as possible. 

Please put these caregiver-only support group meeting dates on your 2020 calendars now.  An email requesting RSVPs will be sent out a week or so before each meeting. RSVPs are always due by noon on the Saturday (one day) before each meeting.

All caregivers are invited:  primary, secondary, those giving hands-on care, those managing care, and those giving emotional and informational support.  Newcomers, casual visitors, and longtime attendees are all welcome! Former caregivers–those whose loved ones have already passed away–regularly attend.  Former caregivers have been through it all and are invaluable resources to those learning to cope.

If you are an active caregiver with a loved one at home, consider asking for a “respite care grant” from your county’s agency on aging or from your local caregiver resource center (see caregiver.org/californias-caregiver-resource-centers).  Such grants pay for a caregiver to be in your home while you attend support group meetings.  The Alzheimer’s Association (alz.org/norcal) also offers respite grants for those dealing with dementia.

We occasionally have guests.  Guests have included a family consultant from Family Caregiver Alliance, a board member of the Lewy Body Dementia Association, and a board member of CurePSP.

At two separate meetings in 2019, we welcomed people with a neurological diagnosis — 3 with MSA and 4 with PSP.  Those with a diagnosis meet separately from caregivers. If you have a family member with MSA, PSP, CBD, or LBD, and they are interested in having dinner with others with the same diagnosis, please let me know AT LEAST ONE WEEK before each meeting.  These extra gatherings take a bit of coordination.  

We have over 450 members now, with attendance of 20-30 at caregiver support group meetings.  Roughly speaking, of the 450 members, 50% have an LBD connection, 30% have a PSP connection, 18% have an MSA connection, and 2% have a CBS/CBD connection or Atypical Parkinsonism connection.  (I believe we have the largest PSP, LBD, and MSA local support groups in the US.) If you have suggestions on how we can get the word out about our group, let me know!

We look forward to seeing you at some meetings in 2020!

Brain Donation: It Takes Brains to Solve FTD

Brain Support Network was recently featured by the FTD Disorders Registry in their quarterly newsletter  “The Voice of FTD”. The article delves into the importance of brain donation for researchers and families searching for an accurate diagnosis.

Excerpt : “Currently, there are no known cures nor treatments to slow the progression of FTD. But brain donations provide researchers tools to investigate the complex genetic and biochemical steps that lead to loss of brain cells. This may provide clues to discovering ways to prevent, treat, or cure these neurological diseases.”

The full article can be viewed here.

Basket Trials and Neurodegenerative Disease – Summary of a PSP, CBS, and AD Study

This research summary, written by medical writer Lauren Stroshane, has been posted here with permission from Stanford’s Parkinson’s Community Outreach.  The summary addresses a drug trial by the UCSF Memory and Aging Center that evaluated an experimental drug, TPI-287 in Alzheimer’s Disease (AD), corticobasal syndrome (CBS), and progressive supranuclear palsy (PSP).  While the drug was not effective, scientists still learned useful things from this “basket trial,” which is a research method used in cancer research.

Here’s Lauren’s summary:


Research Summary:  Basket Trials and Neurodegenerative Disease
December 5, 2019
by Lauren Stroshane with Stanford’s Parkinson’s Community Outreach

A recent drug trial by the UCSF Memory and Aging Center is the first of its kind for neurodegenerative disorders and represents an exciting new method for evaluating the effectiveness of a single drug on participants with the same underlying biology, but different diagnoses. First used in cancer research, basket trials lump together patients by disease pathology, not by diagnosis or symptoms. The UCSF trial evaluated the effectiveness of a drug, TPI-287, in treating toxic buildup of tau protein in the brains of patients with Alzheimer’s disease (AZ), corticobasal syndrome (CBS), and progressive supranuclear palsy (PSP). While the drug ultimately did not show promise, scientists still drew useful takeaways from the study, and future studies of neurodegenerative disease may benefit from utilizing a basket trial design.

What is a basket trial?

A fairly recent innovation in cancer research, basket trials evaluate the effect of a drug on one underlying mutation that can cause a variety of different cancers [1]. For instance, treatment developed for melanoma has also been shown to treat some forms of lung cancer [2]. Basket trials are an offshoot of precision medicine that helps scientists and clinicians identify which patients are likely to be helped by specific treatments. By lumping patients together into the same “basket,” scientists can evaluate a drug’s effects among a broader group to see if benefits are observed. This is distinct from an “umbrella” trial that contains different arms of study, with patients assigned to separate arms depending on their cancer type [1].

An added benefit of the basket study is that it has the potential to open up future treatment eligibility to a larger patient population.

Why is this important for research in neurodegenerative disorders?

Most patients with a neurologic disease have had the frustrating and time-consuming experience of trying multiple medications before (hopefully) finding one that is helpful for their symptoms. Precision medicine aims to eliminate some of that guesswork, by allowing clinicians to more accurately predict which patients will respond to which medications.

In the neurologic world, basket trials could translate to studying the effect of a drug on a specific brain pathology—rather than on a cancer mutation—among patients with a variety of neurologic diagnoses and symptoms, who nonetheless share the same underlying biology.

The UCSF Memory and Aging Center has adapted this approach to look at different types of dementia which share a common pathology. A type of mis-folded protein called tau is known to accumulate in the brains of people with Alzheimer’s disease (AZ), progressive supranuclear palsy (PSP), and frontotemporal dementia (FTD), among other diseases [3]. Although the symptoms of tau pathology may manifest differently among individuals, the underlying toxic action of the tau protein is thought to be the same.

What did the UCSF study find?

In November 2019, UCSF researchers published results of the first-ever basket trial in neurodegenerative disease, which included 95 participants with AZ, PSP, and CBS, and evaluated their response to the drug TPI-287 [3]. This was a safety and feasibility study, to make sure the drug did not harm participants; if well tolerated, it was hoped that TPI-287 would repair some of the damage caused by abnormal tau in the brain.

While results showed that the drug was ultimately not helpful to treat any of these diseases, the researchers did learn some important takeaways [4]:

TPI-287 caused significant allergic reactions in participants with AZ, but not in those with CBS or PSP. This may be due to the difference in risk factors between these diseases: AZ involves the immune system and carries different genetic risk factors than either CBS or PSP.
Some medications that aim to treat tau pathology may not affect all patients with tau disease the same. Further research will help to identify these differences and make such treatments more useful.

What comes next?

The basket approach proved useful in this study, and the UCSF Memory and Aging Center is continuing to deploy it in further research. Another basket trial is currently underway to evaluate the effects of drug BIIB092 (Gosuranemab) on patients with tauopathies including CBS, primary progressive aphasia (nonfluent variant), tau mutation carriers, and chronic traumatic encephalopathy [5].

Researchers are optimistic that continued use of basket trials will help to speed the progress of research into other exciting therapies for neurodegenerative disorders.


Reference List:

[1] Clinical trial design and methodology. American Society of Clinical Oncology. https://www.asco.org/research-progress/clinical-trials/clinical-trial-resources/clinical-trial-design-and-methodology Accessed on December 3, 2019.

[2] Weiler N. ‘Basket’ trials for dementia aim to bring precision medicine to neurodegenerative diseases. UCSF press release. https://www.ucsf.edu/news/2019/11/415901/basket-trials-dementia-aim-bring-precision-medicine-neurogenerative-diseases Published on November 11, 2019. Accessed on December 3, 2019.

[3] Medina M. An Overview on the clinical development of tau-based therapeutics. Int J Mol Sci. 2018 Apr; 19(4): 1160. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5979300/ Accessed on December 3, 2019.

[4] Tsai RM, Miller Z, Koestler M, et al. Reactions to multiple ascending doses of the microtubule stabilizer TPI-287 in patients with Alzheimer disease, progressive supranuclear palsy, and corticobasal syndrome. JAMA Neurol. 2019 Nov. https://jamanetwork.com/journals/jamaneurology/article-abstract/2753779 Accessed on December 3, 2019.

[5] Boxer A. BIIB092 in primary tauopathies: CBS, nfvPPA, sMAPT, and TES (TauBasket). ClinicalTrials.gov. https://www.clinicaltrials.gov/ct2/show/NCT03658135 Accessed on December 3, 2019.


Swallowing, Eating/Chewing, Taste/Smell, etc – Notes from Speech Therapist

Courtney Lewis, a speech pathologist in Australia, spoke recently to the FTD (frontotemporal degeneration) support group in Hawthorn. She addressed swallowing, eating/chewing, oral behaviors (common in the behavioral variant of frontotemporal dementia), taste/smell, and taking medication. Helpful notes from the meeting were taken by Wendy Kelso. I read these notes on the FTD Support Forum, posted by online friend Glen, whose late wife had semantic dementia. Wendy has given permission for these notes to be shared.

Note: I’ve left in all the Australian spellings and terminology (eg, “swallowing tablets” for “swallowing medication”).



Summary of Discussion with Courtney Lewis, Speech Pathologist
FTD Support Group, Dementia Australia Hawthorn
1st November 2019
Minutes: Wendy Kelso


– Swallowing is a highly complex activity that requires planning and co-ordination of a number of brain regions
– Controlled by motor cortex – muscles/movement
– Orbitofrontal cortex – behaviour
– Precentral gyrus – voluntary initiation of the swallow reflex
– Brain stem – cranial nerves
– When you swallow, the airways are closed to prevent food going down
the wrong way
– If the windpipe does not properly close off, or if swallowing is not well coordinated, choking can occur
– Aspiration pneumonia can occur if food enters the lungs
– Malnutrition and dehydration may occur as a result of swallowing difficulties

To help the swallowing reflex:

– Verbal instructions usually don’t work – better to use tactile (touch) cues to swallow
– Tap or stroke the persons chin or cheek gently to encourage swallowing
– Take little sips of water when the person has the sensation in their mouth
– Put a cold spoon on their lips to open the mouth to allow them to be fed
– Sometimes people have forgotten what to do next after chewing and need prompting to swallow
– Try and provide food that needs less chewing – steak/tough meat requires too much chewing and is effortful to swallow
– If the mouth is overfull, this affects swallowing
– Try and encourage smaller mouthfuls of food to assist swallowing


– Brain changes in FTD cause changes in eating, drinking, chewing and swallowing behaviour
– Many people consume food and drink to excess and cannot control their food intake
– They may consume large quantities of sweet foods, sweet drinks and/or alcohol and cigarettes
– They may eat items that are unpleasant or non-food items, such as soap
– Sweets have a high reward centre in the brain – quickly sends pleasure information to the brain
– If the person doesn’t chew their food, it usually reflects frontal/behavioural changes rather than a problem with swallowing

Eating Tips:

– Change the environment – reduce the volume of food/drink and the number of options
– Provide healthy food options in portion controlled sizes
– Never have a buffet meal if the person overeats and cannot monitor their food intake
– Use smaller spoons, plates, cups and wine glasses
– Routine helps – regular meal times in the same place using the same cutlery and crockery. This helps the person recognise it is meal time
– Using hands to eat and finger food is fine – it can assist people to remain independent at feeding for longer
– Changing the temperature and texture can assist the food to go down
– Soup can make the food more moist
– Some people will require 1:1 supervision with meal times to assist the process and ensure safety
– Chewing requires a lot of effort – it is a form of exercise
– Sometimes people become breathless when chewing and this can lead to aspiration
– Fatigue affects chewing and swallowing


– Common behaviours include lip smacking, lip chewing and tongue clicking
– Strategies can include sucking or biting items such as a soft piece of fabric or using ‘chewy tubes’
– Chewy tubes are highly tactile and can be in the form of a necklace or bracelet
– If the person licks their lips, try using lip balms or chapsticks
– If the person tongue clicks or thrusts, try and reduce the sound
– If the person is a smoker, this can leave their mouth feeling very dry and they can exhibit a variety of oral behaviours
– Try and encourage sips of water


– Changes to taste and smell are caused by changes in the frontal and temporal lobes in the brain
– These changes are very common in bvFTD
– The olfactory bulb (smell) is usually working but the information is not being relayed back to the other areas of the brain that control smell
– Sweet foods are highly desirable as they have a stronger more pleasant taste and have a high reward and value system in the brain
– People with FTD find it difficult to process sour/bitter and disgusting foods
– As an example, broccoli and cauliflower have a ‘negative’ taste, so is less palatable than ice cream to the person with FTD


– Sometimes swallowing tablets with ice-cream, yoghurt or custard can help
– Many people will find it very hard to swallow tablets with water/liquid
– Swallowing tablets with water is a complex multi-step task and requires more co-ordination