Not 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).
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.
Oliver Sacks wrote a beautiful piece in the NY Times last week about his life in retrospect, now that he knows better how much more time he has- I would like to think that my patients with dementia at some level can enjoy the same process, to whatever extent possible, as they realize that the end is real and more near than they had expected.
Recent CBC piece re patients whose dementia ruins their judgement and therefore cancel their own insurance policies! This could be ruinous. Add it to your list of things to do today.
Thanks, Spiceman Costas Halavrezos for making me aware of this today!
New friends in Hawai’i called my attention to this article in the New Yorker. You may recall previous post in which I wondered at palliative care bringing PCP back into play to address end of life agitation. Perhaps this use of the element in “magic mushrooms” could have the same effect. But hard to know whether those with dementia might be more likely to have frightening hallucinations, as opposed to those that might bring sense of wellbeing without having to function at a higher cognitive level.
Please also note that the recent clinical trial described was conducted under very controlled, responsible circumstances. Safety IS an issue.
No further published evidence to push for use of oxytocin (nasal spray) for the behavioral disturbances due to frontotemporal dementia, but Dr. Finger and colleagues just had article published in the high profile journal Neurology, which will help doctors know to consider it as therapy. This paper, a requisite for further research, establishes the safety of using oxytocin among this patient population.
Oxytocin for frontotemporal dementia: A randomized dose-finding study of safety and tolerability. Neurology.2015 Jan 13;84(2):174-81. doi: 10.1212/WNL.0000000000001133. Epub 2014 Dec 10.
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Joo et al. report that US stroke cases among those older than 70 years require on average 12.5 hrs /week of informal (family) caregiving time. This is in addition to whatever help informal caregivers provide to those over age 70 yrs without specific medical conditions.
By comparison, figures provided in the Rising Tide report developed by the Alzheimer Society of Canada clock a caregiving rate of 14.6 hrs per week.
In the Netherlands, stroke takes 20.2 hours of informal care per week (2001 numbers). In Thailand, stroke requires 23.6 hours of informal care per week.
Stroke is right up there with Alzheimer’s disease in terms of time and energy needed from informal caregivers internationally.
Joo et al. Cost of informal caregiving associated with stroke among the elderly in the US. Neurology 2014; 83: 1831-1837.
A paper in the November issue of Neurology by the Australian FTD research group has observed that of subgroups with FTD or Alzheimer’s disease, behavioral variant FTD have the worst lipid profiles and indices of overproduction of insulin (hyperinsulinemia). Hard to say whether this comes from the overeating and preference for sweets that is more common among that subgroup of FTD than in semantic dementia or AD, i.e., is a sequela of the disease and behavioral changes, as opposed to the cause. And the authors did not speculate as to whether this implies a potential treatment strategy, but the work will be followed by more research for sure.
Systemic metabolism in frontotemporal dementia. Ahmed RM, MacMillan M, Bartley L, Halliday GM, Kiernan MC, Hodges JR, Piguet O. Neurology. 2014 Nov 11;83(20):1812-8.
I’m not sure if they’ll ship to the US or Canada, but some folks in the UK have the right ideas: custom made very simplified one-touch phones!
Anyone who’s tried to teach an older parent how to work an iPad (ME!) or how to dial numbers or check voicemail on a smartphone understands how much these devices need to be simplified.