End of Life Journey vs Trip

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.

Update on Oxytocin

nosesprayNo 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 journalĀ 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.

Alzheimer’s Caregiving vs Stroke Caregiving Hours

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.

Chicken or Egg?

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.

Assets Needed or NOT Needed for Long-Term Care Are Confusing!

Read this article carefully about how to qualify for Medicaid to assist with long-term care facility costs- it’s counterintuitive!

“When you apply for Medicaid to assist with the cost of in-home care or a long stay at a nursing home facility, federal rules require you to supply five years of financial records. Large bank withdrawals made during that five-year period will send up red flags, as will setting up a trust to shelter assets or selling a home to a relative at a discounted rate.”

Caregiver Advocating

Thanks, Bruce Rhodes, for these pieces that help us get the word out about FTD and support needed:

Tips for Caregivers from Other Caregivers

Thank you to all the folks who took the time to approach me after this morning’s presentations to share their experience for your benefit. Here are some pearls, with the disclaimer that I am quoting experiences that I will take into consideration in my further practice. I have not got any scientific evidence to explain or support these reports:

  • Although I say that anti-epileptic drugs such as valproic acid or Divalproex have come into and out of vogue (then back in again) as efficacious in behavioural control, FOUR caregivers scurried up to me to report really remarkable changes for the better in their patients who were put onto valproic acid.
  • One caregiver decided to make changes in their daily diets, to see how much she could optimize her patient’s function. There is a lot of evidence to support these sorts of changes to prevent dementia, but less evidence to bolster the institution of dietary restrictions once dementia has already been diagnosed. She noted much better cognition/behavior after cutting back on foods with high or any sugar, high fat foods and caffeine. But this point will interest those looking for some control over hypersexual behavior, she believes those supplements that can enhance bloodflow (vitamin E, aspirin, and “coenzyme Q10″) maintained his abnormal libido. Another way of saying that is that withholding these agents remedied abnormal HYPERsexuality. I put coenzyme Q10in quotes above just because I do need to add disclaimer that this supplement is not known widely or prescribed for blood-thinning purposes. But there’s the advice, please do comment below so that other caregivers can get a survey of whether your experience has been similar or different.