Poem for Caregivers

[Sent to me by a Toronto caregiver. Writer is anonymous.]
Do not ask me to remember

Don’t try to make me understand

Let me rest and know you are with me

Kiss my cheek and hold my hand
I’m confused beyond your concept

I am sad and sick and lost

All I know is that I need you

To be with me at all cost
Do not lose your patience with me

Do not scold or curse or cry

I can’t help the way I’m acting

Can’t be different though I try
Just remember that I need you

That the best of me is gone

Please don’t fail to stand beside me

Love me ’til my life is done

In Memoriam…Dr. Frederick Li, Groundbreaking Cancer Researcher at Harvard

NY Times obit summarized the important work of Dr. Li – his lab talked with families that seemed prone to cancer and then did the genetics to crack codes of cancers. That he developed Alzheimer’s and died from it by 75 reminds us that although educational level and engaging problem-solving careers can be protective against dementia, those effects are not guaranteed.

  

More on Work and Prediction of Cognition in the Future

Here’s another study that compared aspects of some job descriptions and implies some protective effect in late-life. Specifically, they used O*NET designations of what particular cognitive skills are used on the job to compare jobs and late-life cognitive decline. 

In a nutshell, individuals with work that emphasized executive, verbal, or fluid intelligence traits were less likely to show cognitive decline (mild or into dementia) later in life, beyond retirement. Examples of those traits were not listedin the paper, but first author, Dr. Then of the University of Leipzig,  was kind enough to send me more information:

  • Executive: administrator in education or health care, production or purchasing manager, vehicle fleet manager, restaurant manager, chief executives
  • Verbal: lawyers, regulatory affairs manager, human resource manager, branch manager, auditors, economists
  • Fluid: power plant operator, chemical equipment operator, drivers (police, firefighter, etc.)

Worth noting: you don’t have to be a CEO or hold an advanced degree to qualify!

O*NET is at http://www.onetonline.org if you want to see how this works. The study is by F.S. Then et al. Differential effects of enriched environment at work on cognitive decline in old age. Neurology 2015;84:2169-2176. The title makes it sound like what kind of office you have makes a difference, but this is more about how you use your mind while at work!

Job Title Makes a Difference in FTD Survival

This is a summary of paper just published in Neurology:
Neurology. 2015 May 19;84(20):2070-5. doi: 10.1212/WNL.0000000000001595. Epub 2015 Apr 22.Occupational attainment influences survival in autopsy-confirmed frontotemporal degeneration. Massimo L et al.

The authors compared the survival plots for autopsy-confirmed cases of FTLD* and of Alzheimer’s disease, stratifying those patients according to job descriptors. Operative and service workers survived for a shorter amount of time after symptom onset than craftsmen, foremen, managers, administrators, clerical and sales workers (50% of each group had died at a little over 2 years vs. 4 yrs, respectively). And the highest attainment group, defined as professional and technical workers, had a 50% survival rate of approximately 8.75 years.

*FTLD in this case consisted of 64.7% behavioral variant FTD, 11.7% semantic dementia, almost 6% the other 2 primary progressive aphasias, 11.8% corticobasal syndrome.
Note that duration of illness at time of diagnosis varies, depending on when a caregiver recognizes a symptom as significantly different from baseline behavior or cognition. Of interest was that education level itself didn’t matter as much as highest occupational title during the individual’s career, which is likely an indicator of cognitive reserve that can run independent of formal educational level. We think cognitive reserve serves to make people more resilient to the buildup of abnormal proteins that develops to cause (and sometimes incidentally due to) the dementia process.
Men had longer survival than women with FTD, but I could not find the number of years of months of difference within the article. Given the ages of these patients (average 60.6 yrs), male sex might correlate with higher occupational attainment.
The occupations did not make a difference for survival in Alzheimer’s disease.

Among my own clinic patients, I saw survivals very commonly up to 10 years after diagnosis. This may reflect the patient populations served at UCLA, USC and Baycrest, who would have mainly fit into the middle and highest attainment groups described above.

Of course there are many variables that sort out with occupational attainment, not the least of which may be access to resources that improve overall health and therefore survival. I look forward to Penn’s next report arising from this paper!

Social Media to the Rescue?

Try website to help friends and family organize around you without having to send repetitive emails or have your phone ringing off the hook when you have your hands full– see NY Times article that highlighted one site called CaringBridge. 2/3 of the “communities” on one site were started by women, which makes sense, since women typically pick up the caregiver role. 

What if…?

Jennifer-Garner-whispering-in-Ben-Afflecks-ear-at-2013-Vanity-Fair-Oscar-party-640x427…your smartphone could take the place of a spouse whispering clues to friend’s identities to you when you walk into a crowded room? Thanks to Betsan in Wales for tipping me off to this new app – which is all the more elegant because it uses existing technology that has become quite commonplace in urban centers.

The patient’s phone would flash who’s in the room, maybe with personal hints as to how the patient is connected to him/her, too! I think I actually need to start using the app now. No more, “Oo, I know that person, but how? And darn, what’s his name again?”

Personalized Medicine Ready for PrimeTime!

사본 -gene drugNot sure where they are in the process for Canadian clinical use, but in just a few days, I will be able to do what we’ve been promising patients for decades: test to see how patients are programmed genetically to tolerate and metabolize frequently prescribed medications for seizures and for mental illnesses. I’ll put this into use frequently in my “new” general neurology practice out in Hawai’i. The guys who are providing this service at Millennium Health (based in San Diego) reassured us that insurance is finding this worth covering for the patients!

Just this morning I saw two horrible allergic reactions to anti-seizure medication that could have been avoided if we’d had earlier access to this service. The testing panels offered also include how patients might metabolize anti-psychotic and SSRI drugs, which we prescribe frequently for dementia symptoms. Ask your doctor (primary care providers and specialists alike can order).

We’d Like to Take a Look When You’re Done with your Brain…

I am prompted to write this post in light of the recent passing of friends’ parents with dementia. Unfortunately, it can be a bit unclear how to sign up for brain autopsy while the patient is still alive AND the availability of autopsy services has changed with loss of funding for Alzheimer’s research, so please review the following:

  • It is no longer true that you need an autopsy to be sure a patient had Alzheimer’s disease. With a knowledgeable historian that can describe just how a patient has changed over time and neuroimaging that has ruled out other causes, we can be sure something was Alzheimer’s.
  • We can’t, however, be as sure with the non-Alzheimer’s dementias: let’s say your doctor started off with a non-Alzheimer’s diagnosis (e.g., behavioral variant FTD) but then the illness progressed soooooo slowly, we had to put Alzheimer’s disease back on the differential diagnosis list. Sometimes an autopsy can bring closure to a mystery case. Or if the patient progressed a lot more rapidly than we would have predicted, that would be another reason to make sure we know the diagnosis so that we can help your family understand whether there is any familial risk down the line.
  • Whereas Alzheimer’s research centers throughout the US used to be funded to take whatever patients wanted to donate a brain, even if waiting to volunteer at the last minute (time of death), we are in a new era, where the guidelines follow the money-saving mandate that a patient has been followed at one of the academic dementia care centers over time so that there are good pre-death records to correlate with the pathology findings. This holds true for Canada also and may always have been the case there.
  • If you think you may want to sign up for brain autopsy, act sooner, rather than later. It is very hard to think straight once you are in the throes of the patient’s last hours of life.
  • Start a relationship with a tertiary dementia care center if you don’t already have one and let the staff there know you’re interested in brain autopsy so that you can start filling out the paperwork. If you don’t want the autopsy done for free or don’t have an Alzheimer’s Disease Research Center near you, see Options B below
  • “The paperwork” should not only include who the power of attorney or decision-maker will be at time of death, but also which physician should receive the report, where the patient is likely to be at time of death (long-term care facility name or your home?), and instruction to you (or long-term care facility manager) at time of death. Those Instructions at Time of Death should give you one hotline to call to get everything moving, as well as the tips on how the body should be handled between time of death and the autopsy itself.
  • In general, you want to get the body cooled down asap. If cooled down sufficiently, the autopsy itself doesn’t have to happen for days. If there is no cooled storage at the facility where patient passes (hospitals typically have their own morgues in basement), transfer to the mortuary who will handle cremation or burial prep might be just the right interim solution.
  • Some university neuropathology divisions offer 24/7 service; others are available only during bankers’ hours. The Instructions at Time of Death should help you know what kind of service is available. And accordingly, figuring out where the “frig” is ahead of time can make the difference between ultimate answers to diagnostic questions and a missed opportunity.
  • Keep one copy of the Instructions at Time of Death handy and one copy at the patient’s facility on his/her chart right next to the Advanced Directive paperwork. If the facility is not in on the loop, they don’t know to cool the body down until they’ve finally reached next of kin.
  • Options A: you can have the researchers look at “brain and spinal cord only” or the whole body. I don’t recommend just brain because some of the changes in the brain might indicate that similar pathology was also active in the spinal cord (TDP-43 deposition, changes of ALS).
  • Options B: if you can afford to pay out of pocket for the autopsy (US$1800 for brain at time of this writing), you can specify to your local hospital that you would like to pay out of pocket for the transportation and autopsy at the time of death. My  advice about cooling the body down immediately after death still holds. Caveat here is that not all hospitals have the resources to do the in-depth immunostaining and fancy searches for esoteric causes of dementia, so caveat emptor!

Here’s an example of one Alzheimer Disease Research Center’s info on this process.