“Long-Term Care Insurance: How to Choose It”

As this article in Barron’s indicates, there are only three ways to pay for long-term care (sometimes called “custodial care”): out-of-pocket, Medicaid, or via long-term care insurance. This article provides an overview of LTC insurance — who’s in the “sweet spot (those in their late 50s) and how policies vary (maximum monetary benefit, maximum life of a policy, elimination period, and inflation adjustments).

The full article link is below. You can only access the full article online if you are a Barron’s subscriber.


Barron’s: Long-Term Care Insurance: How to Choose It
It’s not easy finding a comprehensive and affordable plan. Some guidelines will make the quest less difficult.
by Nancy F. Smith
April 11, 2015


“Hospital discharge: It’s one of the most dangerous periods for patients”

This article by Kaiser Health News (KHN) stresses that the time after hospital discharge is a dangerous period. “Bad coordination often plagues patients’ transition to the care of home health agencies, as well as to nursing homes and other professionals charged with helping them recuperate, studies show.” The example given in this article, published in the Washington Post, is of a woman who died as a result of medication mistakes made by a pharmacy technician and two RNs at a home health agency.

The article mentions a few other danger-points worth repeating:

  • “At hospitals, federal data show that fewer than half of patients say they’re confident that they understand the instructions of how to care for themselves after discharge.”
  • “In nursing homes, case management frequently comes up short. A 2013 government report found more than a third of facilities did not properly assess patients’ needs, devise a plan for their care and then follow through on that.”
  • “And at home health agencies, where failures to create and execute a care plan are the most common issues government inspectors identify, followed by deficient medication review, according to KHN’s analysis.”

See: www.washingtonpost.com/news/to-your-health/wp/2016/04/29/from-hospital-to-home-a-dangerous-transition-for-many-patients/


Status of DLB and PDD Research

This write-up, published yesterday (4-21-16), from Alzforum is about the status of research into Lewy body dementias (LBD), which includes Parkinson’s Disease Dementia (PDD) and Dementia with Lewy Bodies (DLB). This summary is based upon discussion among experts at an NIH conference in Maryland at the end of March 2016. The NIH held a similar conference in 2013.

This is well worth reading. Here are key excerpts of the summary:

  • “Topping the priority list at the 2013 summit, and again this year, were clinical trials of repurposed drugs, investigational compounds, or non-pharmacological methods to treat the symptoms of LBD, said Jennifer Goldman, Rush University Medical Center, Chicago. Few advances have been made on that front. In the past three years, a handful of clinical trials has been completed for DLB, mostly for drugs used in Alzheimer’s…” Two clinical trials on Aricept (donepezil) were conducted in Japan.
  • “Three clinical trials have targeted PDD, Goldman said, one finding that rivastigmine is safe for this disorder, another that memantine lessens caregiver burden, and another that pimavanserin may relieve psychosis…”
  • “The committee further recommended compiling an inventory of available autopsied LBD brains to prepare for large, coordinated studies.”

Brain Support Network, by the way, has handled many LBD brain donations over the last nine years. If you’d like us to assist your family with brain donation arrangements, let us know. Obviously, autopsied LBD brains are critical for research.

Check out the link to the Alzforum website as there’s an interesting image of a pareidolia test. Apparently those with dementia with Lewy bodies tend to misinterpret random stimuli.

“At 2016 Summit, Field Tackles AD-Related Dementias One By One”
Series: Alzheimer’s Disease-Related Dementias 2016 Summit, Part 2 of 2
21 Apr 2016


Dangers of Polypharmacy

This is one of the best recent articles I’ve read on polypharmacy–taking five or more medications a day.

The New York Times – Health
The Dangers of ‘Polypharmacy,’ the Ever-Mounting Pile of Pills
by Paula Span
April 22, 2016

Here are some key points made in the article, published in today’s New York Times:

  • While drug interactions can occur in any age group, over 15% of older adults are at risk for a major drug interaction.
  • Older people are more vulnerable. “Most have multiple chronic diseases, so they take more drugs, putting them at higher risk for threatening interactions. The consequences can also be more threatening. ‘They’re more prone to fall, because they don’t have the same reserves of balance and strength’ as the young or middle-aged, [Dr. Michael A. Steinman, a geriatrician at the University of California, San Francisco] said. ‘And if they do fall because they’re dizzy, they’re more likely to get hurt.'”
  • “Some common combinations that cropped up in the study and could spell trouble: aspirin and the anti-clotting drug clopidogrel (Plavix)…; aspirin and naproxen (Aleve); …the cholesterol drug simvastatin (Zocor) and the blood pressure medication amlodipine (Norvasc).”
  • “[Patients] and families can ask their physicians for brown bag reviews, including every supplement, and discuss whether to continue or change their regimens. Pharmacists, often underused as information sources, can help coordinate medications, and some patients qualify for medication reviews through Medicare.”
  • We don’t consider when medications should be stopped.

Some of you may want to check out the NYT website and investigate some of the links within the article.


Issues in Dementia Diagnosis, Research, and Lexicon (Alzforum – April 20, 2016)

A nice write-up was posted today to Alzforum on the recent Alzheimer’s Disease-Related Dementias (ADRD) summit at NIH. This year’s summit was focused on Lewy body, frontotemporal, vascular, and mixed dementias. Here are some interesting quotations from the write-up:

  • Because many dementia patients are unaware of their problem, they often don’t tell their doctors. “Families participate in that, too. It is human nature,” said David Knopman, Mayo Clinic, Rochester, Minnesota. This leads to significant under-diagnosis. “Primary care practices are also problematic: physicians don’t have time for a mental status exam or to talk to families, and they aren’t always familiar with all the various dementing illnesses,” Knopman said.
  • Treatable causes of dementia are quite common, [Neill Graff-Radford, Mayo Clinic, Jacksonville, Florida] said: sleep disorders, thiamine, copper, or other nutritional deficiencies, and certain medications, to name a few.
  • The diagnostic criteria for DLB and FTDs work well, and even when the dementia is progressive, symptoms can be controlled early on in some cases. For instance, medications can control sleep disorders, cognitive impairment, and motor problems of DLB, and treating hypertension may slow the progression of vascular dementia.
  • What’s more, an accurate diagnosis can direct people toward clinical trials and help predict their rate of decline, Graff-Radford said.
  • “There’s a dearth of researchers and geriatricians from a time when we could not fund Alzheimer’s and related dementias,” said Maria Carrillo, Alzheimer’s Association in Chicago.
  • Knopman said scientists need to better define the syndromes and etiologies they study and describe them with more precise language. Among Alzheimer’s and Parkinson’s researchers, entrenched debates about terminology have arisen because clinicians classify diseases based on symptoms, whereas pathologists classify them based on molecular pathologies.

Here is a link to the full write-up: http://www.alzforum.org/news/conference-coverage/ad-related-dementias-summit-2016-progress-aims-dollars


“Dementia patients are wrongly told ‘it’s just a mid-life crisis’ because doctors miss tell-tale signs of symptoms”

This post may be of interest to those dealing with dementia.

Though this article is mostly about FTD (frontotemporal dementia), it makes the important point that physicians miss non-Alzheimer’s dementias because many physicians only know to look for memory loss.


Dementia patients are wrongly told ‘it’s just a mid-life crisis’ because doctors miss tell-tale signs of symptoms

* Thousands have types of dementia that have wide-range of symptoms
* Traits, other than those associated with Alzheimer’s, are being missed
* Changes in personality and a loss of motivation can be warning signs
* Some patients can take years before doctor realised and diagnose them

By Tammy Hughes
The Daily Mail
Published: 19:58 EST, 28 March 2016 | Updated: 05:07 EST, 29 March 2016

If you want to learn more about FTD, there’s a one-minute video on the webpage with the article.


“Pimavanserin Nears Approval to Treat Psychosis in Parkinson’s”

LBD folks –
This new drug is coming on the market soon for psychosis (hallucinations, delusions) in Parkinson’s Disease — pimavanserin (brand name – Nuplazid).  I imagine many with Lewy Body Dementia will be prescribed the medication as well, based on a neurologist’s willingness to prescribe a new medication.  This is a good summary of the drug’s current status.  And note Dr. Ian McKeith’s comment about prescribing this medication for those with DLB (dementia with Lewy bodies).  He’s very concerned about “neuroleptic sensitivity” in the DLB population.  Dr. McKeith is a DLB expert.


Pimavanserin Nears Approval to Treat Psychosis in Parkinson’s
06 Apr 2016


“For Robin Williams, Diagnosis Came Too Late”

Thanks to LBD group member Dell for sending this link to me today.


For Robin Williams, Diagnosis Came Too Late
MD Magazine
Conference Coverage > AAN 2016
Apr 19, 2016   
Amy Jacob

Editor’s Note: Susan Schneider Williams, spouse of the late Robin Williams spoke with MD Magazine about the several symptoms the actor presented up to a year before his death that made it difficult to diagnose what he was suffering from: Lewy Body Disease (LBD).

This is an interesting (short) interview with the widow of Robin Williams with some info that I hadn’t read previously.

I’ve never heard of “inpatient neuro cognitive testing.”  Sounds more like inpatient psychiatric stay with neuropsychological testing and medication trials.

Unfortunately the term “Lewy Body Dementia” or “Dementia with Lewy Bodies” isn’t used…  Technically speaking, Lewy Body Disease can refer to Parkinson’s Disease.


“Pimavanserin Nears Approval to Treat Psychosis in Parkinson’s”

A new drug is coming on the market soon for psychosis (hallucinations, delusions) in Parkinson’s Disease — pimavanserin (brand name – Nuplazid). I imagine many with Lewy Body Dementia will be prescribed the medication as well, based on a neurologist’s willingness to prescribe a new medication. This is a good summary from Alzforum (alzforum.org) of the drug’s current status. And note Dr. Ian McKeith’s comment about prescribing this medication for those with DLB (dementia with Lewy bodies). He’s very concerned about “neuroleptic sensitivity” in the DLB population. Dr. McKeith is a DLB expert.




Pimavanserin Nears Approval to Treat Psychosis in Parkinson’s
06 Apr 2016

Pimavanserin has cleared another hurdle on the road to becoming the first antipsychotic approved for use in any neurologic disease. A Food and Drug Administration committee voted 12 to two that the drug’s benefits outweigh its risks for Parkinson’s patients with psychosis. The drug’s maker, ACADIA Pharmaceuticals, announced the vote on March 29. The decision was covered by The Wall Street Journal and Business Wire. The FDA is expected to complete its review of pimavanserin, now trade named Nuplazid, by May 1.

The endorsement drew praise in the field. “Pimavanserin is a breakthrough agent,” Jeffrey Cummings at the Cleveland Clinic Lou Ruvo Center for Brain Health, Las Vegas, wrote to Alzforum. Cummings co-led a Phase 3 trial for the drug. “The trial and the approval process open the door to more neuropsychiatric drug development, and the availability of pimavanserin to our patients is a great stride forward,” Cummings added.

“This is definitely good news for patients with PD and psychosis,” wrote Dag Aarsland, Karolinska Institute, Stockholm. Daniel Weintraub, University of Pennsylvania, Philadelphia, agreed. “Given our recent research on increased mortality with [typical] antipsychotic use in PD patients, I am glad that a new option is likely to be available soon,” he wrote to Alzforum (see Weintraub et al., 2016). “There was good evidence for efficacy and short-term tolerability overall, and none of the current antipsychotics (except clozapine) have been shown to be efficacious,” he added.

Up to 40 percent of Parkinson’s patients develop frequent psychoses, according to the National Parkinson Foundation. No good drugs for this symptom currently exist, with older antipsychotics carrying a “black box” warning of increased mortality for dementia patients (see Oct 2005 news; Jan 2009 news; Feb 2011 news). Many of those drugs target dopaminergic systems, which are already perturbed in people with Parkinson’s. Pimavanserin, a serotonin inverse agonist, is a new class of drug, noted Jim Leverenz of the Cleveland Clinic. “The important clinical implication is that this is a fairly clean and effective drug that avoids the dopaminergic system and the motor side effects that can accompany treatment with typical antipsychotics.”

Pimavanserin diminished psychosis in a six-week Phase 3 trial of 199 Parkinson’s patients. In addition, participants reported better sleep and daytime alertness. The drug did not worsen motor function and was well-tolerated, with the most serious side effects being edema and confusion. Some participants have now taken the compound on an open-label basis for several years (see Apr 2013 news; Nov 2013 news).

The drug is under investigation for other neurodegenerative disorders as well, with a Phase 2 trial ongoing in Alzheimer’s. In a separate Phase 2 trial, clinicians are testing another serotonin inverse agonist, nelotanserin, for dementia with Lewy bodies. “Mechanisms for psychosis in patients with DLB would be similar to those in Parkinson’s patients, and one would hope they would respond similarly to treatment,” noted Leverenz. Even in AD, psychosis is often linked to the presence of Lewy bodies as well. Testing this new class of agent in different conditions would be a reasonable next step, Leverenz said. In the meantime, scientists agreed that should pimavanserin be approved for PD, then clinicians will likely begin prescribing it off-label for other conditions.

—Madolyn Bowman Rogers and Tom Fagan

Comment by:
Ian McKeith
Newcastle University, Institute for Ageing and Health
Posted: 07 Apr 2016

This development will be welcomed by people with PD and psychosis and their families, and by clinicians who struggle to manage such symptoms and who find themselves resorting to treatments of limited effectiveness but significant toxicity.

The question about using pimavanserin to treat DLB is interesting and important. If this drug is approved for use in PD psychosis, there will immediately be pressure to use it in people with DLB, who often have severe hallucinations and delusions but who are extremely hard to treat because of their severe neuroleptic sensitivity and because of possible increased susceptibility to confusion when treated with clozapine. However, PD psychosis to DLB isn’t a straightforward extrapolation. Although PD psychosis and DLB share some similarities clinically and pathologically, there are substantial differences, likely reflecting that they are underpinned by variable patterns of change in multiple neurotransmitter systems and circuits.

Patients with MMSE as low as 21 were included in the Acadia pimavanserin trial, and a third were on cholinesterase inhibitors (CHEIs) throughout, but since “patients with delirium” were excluded from entry few probably had the fluctuating pattern of symptoms that is typical of DLB. Elaine Perry published data on Newcastle brain bank cases as far back as the early 1990s showing that preservation of 5-HT2 receptors in the temporal cortex differentiated hallucinating from non-hallucinating DLB cases and suggested a hyper-serotinergic/hypo-cholinergic imbalance as a basis for visual hallucinations in particular. My feeling is that it is the fluctuating, cognitively impaired group who might benefit more than others. The combination of a compound like pimavanserin together with a cholinergic enhancer in DLB might have very significant positive effects upon attention and visual hallucinations, with secondary benefits in delusions and other neuropsychiatric symptoms such as anxiety. But the neurochemical volatility that might make these DLB patients more responsive to treatment could also lead to increased side effects, as we see with neuroleptics and to a lesser extent with CHEIs. So I would urge some careful early dose-finding work to establish safety in DLB, before hopefully moving quickly on to finding which patients and which symptoms benefit most.

Yelp Has Hospital Ratings

Check out:  www.washingtonpost.com/news/to-your-health/wp/2016/04/05/going-to-the-hospital-read-the-yelp-reviews-first

This article itself isn’t of great interest.  What I found interesting was that Yelp (yelp.com) includes hospital ratings.  The article notes that government ratings don’t include 12 categories that Yelp includes:  cost of the hospital visit, insurance and billing, ancillary testing, facilities, amenities, scheduling, compassion of staff, family member care, quality of nursing, quality of staff, quality of technical aspects of care, and specific type of medical care.

So, if you have a choice of hospitals, you might check out Yelp in the future.