New Differential Diagnosis for Behavioral Frontotemporal Dementia

I just read a review on BRAIN SAGGING DEMENTIA. It doesn’t seem fair that another body part might sag as we age, but people who have a cerebrospinal fluid leak may develop symptoms that look like bvFTD, but this is a potentially reversible cause. Not having enough of that fluid to support the usual position of the brain inside the skull leads to a sagging that can be seen on an MRI and looks different from behavioral variant FTD’s shrinkage of cortex.

Most patients with suspected bvFTD will get an MRI of brain as part of the routine workup, so looking for the signs above (Figure 2 from the review article) may help.

It is important to note that the prevalence is not known and that only 70 patients were identified in all the available literature. It is not yet clear how rarely or commonly this occurs. Until more neurologists and neuroradiologists know to look for this, we may not be able to establish the real epidemiology. I remember that the 60 Minutes episode on Normal Pressure Hydrocephalus caused a rush to reverse Alzheimer’s disease diagnoses. Normal Pressure Hydrocephalus does cause cognitive impairment and might be missed in favor of a snap diagnosis of Alzheimer’s disease, but it happens very rarely.

Great Advice to Plan Ahead for Aging

The May 2022 issue of Stanford Magazine has a very digestible brief article that I think everyone up to age 40 should see: 5 Ways to Prepare for a Longer Life (illustration above by Giorgia Virgili)

You’ve seen my repeated observations that physical activity has more and more evidence behind it as a preventive for dementia (along with other risk factors for dementia, like cardiovascular disease). This made the top 5.

The other 4 are:

  • Plan to work longer and differently
  • Change how you save money “You can’t save enough in 40 yearsof work to supportyourself for another 30.”
  • Hang on to friends (amen!)
  • Envision a good longer life

American Academy of Neurology Advice to Neurologists Regarding Aduhelm

Although this was written for neurologists considering whether to recommend the disease-modifying therapy that attained Accelerated Approval from the FDA in 2021, lay people interested to understand the nuances of what’s involved can read here:

I like how the Ethics, Law, and Humanities Committee (a joint committee of the AAN, ANA, and CNS) addressed this in terms of Beneficence, Nonmaleficence, Justice and Autonomy.

Info about Palliative Care

Some of us consider all dementia care to be palliative care (until we have something that stops or reverses the neurodegenerative process). Others consider the end of life decision-making (stop certain medications, forego resuscitation) to be palliative care. Thank you to the LEAD Coalition for bringing this transcription of interview with Dr. Arif Kamal of Duke University to my attention and to share with you! Even if you don’t have dementia, we are all headed to an end of this life…can we plan or at least be clear about our preferences for that end? The answer is yes, but not if we don’t talk about it while we can.

Here’s an example of the refreshing straight talk,

”Not being affected by others’ suffering that you are present for is like thinking you can stand next to a big waterfall and not get a little wet.”

And here’s the American Academy of Neurology’s supportive stance.

Would you like to participate in supporting legislation to expand training and awareness of palliative care in the US? PCHETA stands for the Palliative Care and Hospice Education and Training Act. To write to your senator in support, go to

Update on Loneliness and Dementia Risk

Please see this 2022 Neurology paper by Salinas et al., entitled “Association of Loneliness with 10-Year Dementia Risk and Early Markers of Vulnerability for Neurocognitive Decline.”

The upshot is that the risk of dementia (Alzheimer’s disease plus other causes of dementia) was shown to zoom to 3x over a 10-year observation period among people over 60 years old if they stated they had felt lonely 3 or more days of the past week. The study was done on Framingham Study groups, which are mainly composed of Caucasians with high education levels.

Particular note: there are many individuals who PREFER to spend time alone and do not associate that with loneliness, but maybe now is a good time to assess whether your social circle or activities feel adequate. Or consider calling or visiting someone who might be lonely!

Image courtesy of

If you’re thinking about our unwanted isolation during COVID, the authors cited research reporting “…prevalence [of loneliness] is rising, from 11% to 14% over a 2-year period extending early into the coronavirus disease 2019 pandemic in a US population–based sample.”

In a New York Minute?

Different from a caregiver support group, Memory Advocate Peers are pairing up Alzheimer’s disease patient-caregiver pairs or dyads with one another.

They are currently not recruiting new people living with dementia but need to find mentors (former dementia care partner volunteers) in the NYC area. [Locals can help with referrals to resources they’ve already vetted.] They hope to expand the program in 2023. See below for more info!


4-minute audio recording of Geri and founder Jim talking about living with AD, recorded for StoryCorp


recent video about the program

Refreshingly Honest Article

The American Academy of Neurology magazine for neurologists’ waiting rooms published a very well-written article on Tony Bennet and his family’s journey through Alzheimer’s disease. Such a generous and talented star, shining througe the dementia.

Since his diagnosis of Alzheimer’s disease, Tony Bennett can still engage with music. Photograph by Kelsey Bennett

Power-Packed 18 Pages

I was enjoying The One Hundred Years of Lenni and Margot, a bittersweet novel whose protagonist is a teenager with a terminal cancer, but then the author, Marianne Cronin, slipped in an important plot detail. In a mere 18 pages, she colored a character’s life arc with Alzheimer’s disease in an incredibly moving way. So far, my highest recommended fictional read for 2022.

A Fresh Patient Voice for Frontotemporal Dementia

I am typically slow to read books about medicine during my off hours. But Gail Elliott recommended Mary Beth Wighton’s Dignity and Dementia: Carpe Diem most highly as a story emphasizing continuing ABILITIES as opposed to losses.

The book cover

I’m only 20 pages in, but this author has already pulled me to her side, and I am VERY pleased to already see mention of the long-term care non-coverage of dementia addressed.

If you have wondered what FTD is like from the patient’s POV, I highly recommend this. The link I placed in text above takes you to Amazon, but the book is also available through Target and Walmart.