Many Faces of Dementia 2018

Learning some great things at this biennial dementia conference at USC today:

  • MAPS Charities provides small one-off grants to pay for elders living at home who might need help installing assistive devices like replacing stairs with a ramp. Please consider donating!


  • Did you know that if you took the capillaries in the brain alone (not your entire body), and lined them up end-to-end, they’d take you from LA to San Francisco?!? No wonder it’s easy to lose integrity of this system as we age. That’s a lot of plumbing to keep clean
  • Go to this stroke and heart attack risk factor calculator to get a reality check on whether you’re taking adequate care of yourself to avoid these. Disclaimer – you’ll need your lipid panel lab results to use this.
  • Current estimates of prevalence:
    • Frontotemporal dementia causes about 1% of dementia cases
    • Dementia with Lewy bodies causes about 5-10% of dementia cases (changed! We used to attribute this as *20%*). With this reduction, vascular dementia has reclaimed its #2 spot below #1 Alzheimer’s disease.

What’s the Latest in Alzheimer’s Prevention

As I age, gatherings have my friends commenting about how our generation is coming to its less productive phase and laughing about how our bodies are betraying us.

It’s not hard to segue from there into updating folks on recommendations for brain health.

Livingston et al. (a commission struck by the journal The Lancet) summarized the “state of the dementia union” last summer. Below are some excerpts I thought might lend a positive tone to the year ahead. The numbers relate to the paper’s citations, which you can check out here:

Although no disease-modifying treatment for any common dementia is available, a delay in the onset of dementia would benefit even the oldest adults.20  An unexpected decline in age-specific dementia incidence or prevalence has been reported in some countries, such as the USA, the UK, Sweden, the Netherlands, and
Canada.6,7,21–26 Conversely, an increase in the incidence of dementia in China27 and prevalence in Japan28,29 has been reported, while in Nigeria the incidence and prevalence are stable.30 Results of two US studies25,26 showed that the decrease in age-specific prevalence (despite an increase in the absolute number of people with dementia) was associated with an increase in education.

…However, the increasing mid-life rates of obesity and associated illhealth are projected to lead to a 19% increase in dementia in China and a 9% increase in the USA.32

livingston figI’m esp keen on this diagram. The Commission analyzed what percentage of dementia cases might have been delayed, if not prevented, by modifying those things that we can change, and it turned out to be a full third of cases! Here are some things that we CAN do for ourselves:

  • stay in education at least to high school (studies differ on the cutoff, and high school might actually be overkill)
  • in Mid-life, don’t live in denial about your hearing problem! Treat that high blood pressure, and fight obesity.
  • interestingly, there are things about late life that make up the majority of the helpful interventions (so maybe it’s not too late): stop smoking, treat depression and diabetes if you’ve got them, get physically active, and don’t remain socially isolated.

The new part of these findings is the designation of when in life these things can make a difference. I think you’ve heard about various items on this list previously.

New Book on Mindful Caregiving

the-conscious-caregiver-9781440597732_smAuthor Linda Abbit is the Community Outreach Manager for the Mind and Memory Program at the St. Joseph hospital north of me in Mission Viejo.

Her book, The Conscious Caregiver, stands out as a very helpful DIY (Do It Yourself) guide for those who may not have had any prior exposure to meditation or other mindfulness teachings. You’ll like her vignettes that give some very practical ways to implement the suggestions. We all aspire to being mindful but what do you do when you catch yourself being anything BUT mindful? She actually has a subheader entitled “If You’ve Exploded at a Loved One.” I wish they’d thought to index this as Explosion for quick reference.

Other bits I appreciated in her book:

  • role confusion (it’s not simply role reversal, and you knew that, but how many authors acknowledge it?)
  • mindfulness here is explicitly stated in the caregiving in dementia context
  • the R-word (RESENTMENT) is acknowledged and allowed here
  • a section on Accepting Help. Not just saying it’s important but giving you ways to accept help
  • Happiness L.I.S.T. for activating Self Care
  • She recommends Recording Your Conversations because there may come a time that you actually miss the story that’s being repeated endlessly now…but I think maybe you’ll be surprised to hear your own tone. Could allow for a quick reality check on whether you sound the way you want to be heard? just sayin’…


More Apps for PPA!

Attended and spoke at the Dallas Alzheimer’s Association’s ADvance Symposium today. The next few posts will share what I learned from the other speakers!

From Emily Rogalski, PhD, SLP at Northwestern:

VAST provides a platform to videorecord a mouth saying the phrases or sentences patients feel are important to practice and be able to generate more rapidly. Being able to mirror the video while practicing something you want to say more fluidly works, Dr. Rogalski has found!

Quizlet also allows you to customize a way to practice coming up with your own frequently used words, such as the names of your grandchildren, or even commands you’d give to your dog (example given at the conference was terms used by a sheepherder to tell his dog which way to drive the sheep!).

You may be recognizing Dr. Rogalski’s name from a prior blog post. I’m so excited: They’re now getting ready to enroll people (who can be from all over the US!) into the clinical trial for the online SLP intervention! Sign up through

Expert-reviewed content on Alzheimer’s

Check out Being Patient – Alzheimer’s — Founded and curated by a journalist whose parent was affected by dementia. She’s trying to help guide how you read the  news, and well-known colleagues are her advisors for this independent editorial review of the research news.

Deborah Kan, left her job as Executive Producer at the Wall Street Journal last year to redesign reporting on health after her mother was diagnosed with Alzheimer’s disease. She found that there was no single place she could go, free of any bias, to help her understand the research. She founded Being Patient with one mission –  to provide patients, caregivers and carriers of the Alzheimer’s gene the tools they need to navigate the disease and elevate the patient’s voice into important conversations on healthcare and research


Are you part of the A-List?

alist-logo-iconIf you’d like to make an impact on letting researchers know what matters most to you caregivers for Alzheimer’s disease, please participate in this survey, sponsored by the Alzheimer’s and Dementia Patient and Caregiver-Powered Research Network.

A-List Tools helps you figure out care issues, such as whether it’s time for the patient to stop driving…

A also stands for the ADDEN Network, which is a platform for collaboration among patients, caregivers, healthcare providers, community leaders and researchers with the goal of developing patient-centered research and programming efforts to address disparities among Latinos and African Americans. Anyone who wants to join ADDEN, please e-mail: Jason Resendez ( or Stephanie Monroe (

A collaborator is recruiting to a study from Mayo Clinic (Dr. Joan Griffin) re your expectations of your role within the clinical care team. There will be focus groups to collect the data, and it’s not clear to me whether the groups will meet online so that those of  you outside Rochester can participate. More on that later…or if you don’t mind getting more email, you can subscribe to A-List updates.

Canadian Documentary on Caregivers to Air mid-January


Karen Gillespie and her daughters Meaghan and Emily having fun with Jack. Photo still from the film

The Caregivers’ Club, a CBC documentary following three families living with dementia, will air Sunday, January 14, 2018 at 9:00 p.m. on CBC television. Those of us south of the border in the US or overseas might be able to watch online at starting Friday January 12, 5:00 p.m.

The documentary will also be for sale. There is a longer version (feature length) which will be the one that plays theatrically and sells around the world. This full version follows four families connected to Baycrest Hospital in Toronto.

Just in time for Alzheimer’s Awareness month this year.