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Robin
Blood Test to ID Who Has PD vs. PSP/CBD/MSA
Thanks to Brain Support Network volunteer Denise Dagan for passing this article in MedPage Today on to me. This is progress on the way to a biomarker to discern if someone has Parkinson’s Disease (PD) vs. one of three atypical parkinsonism disorders — progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and multiple system atrophy (MSA). Of course what we really need are biomarkers for each of the disorders — PD, PSP, CBD, and MSA. But still, it’s progress.
The article is about a Swedish/UK study (published in the journal Neurology on February 8th) that shows that neurofilament light chain (NF-L) protein levels are increased in PSP, CBD, and MSA as compared to those with PD or healthy controls. This was true for those recently diagnosed as well as those with had been living with PD, PSP, CBD, and MSA for several years. (This also means that the blood test is not a biomarker for determining if someone has PD.)
And researchers determined that a blood test for the NF-L protein achieves the same results as a spinal test for this protein does. Obviously it’s much easier to administer a blood test than a spinal tap.
In an accompanying editorial, authors pointed out that there is a need for autopsy confirmation of the PD vs. atypical parkinsonism diagnoses.
Here are two excerpts from the article:
* “These atypical parkinsonism disorders are rare, but they generally progress much faster and are more likely to be the cause of death than Parkinson’s disease,” [one of the researchers] said. “It’s important for patients and their families to receive the best care possible and to plan for their future needs.”
* “Distinguishing these major parkinsonian groups is crucial for best possible treatment and care, and not least for providing adequate information to patients and caregivers on their future needs and perspectives,” the editorialists pointed out. “When disease-modifying treatments become available, diagnosing parkinsonian disorders correctly at early, possibly preclinical stages will be even more important.”
Here’s a link to the full article:
www.medpagetoday.com/neurology/parkinsonsdisease/63007
Neurology
Blood Test Matches Spinal Tap to ID Parkinson Disease Types
Less painful diagnostic workup could help diagnosis
by Kristin Jenkins
Contributing Writer, MedPage Today
February 08, 2017
Robin
“Delirium Makes its Own Mark on Cognitive Decline” (Alzforum)
A comprehensive study of delirium and neurodegeneration was published last month in the journal JAMA Psychiatry. The researchers wanted to learn “whether delirium worsens neurodegenerative pathology that’s already in the brain, or causes decline through a separate process, or both.” Note that researchers relied on donated brains of those who suffered from neurological disorders — some of whom also had suffered delirium. (If you are interested in brain donation, Brain Support Network can help your family make those arrangements!)
An Alzforum (alzforum.org) article about this research makes several key points about how delirium can hasten neurodegeneration and how delirium should be prevented:
* “[Delirium] contributes to cognitive decline independently of Aβ, tau, Lewy bodies, or vascular disease. But combined with any of these pathologies, delirium can quadruple the rate of memory loss.”
* “Delirium hastens cognitive decline in patients who have Alzheimer’s disease and increases the risk for dementia in older people who become delirious after surgery.”
* The findings suggest “delirium and pathology interacted to accelerate decline even further.”
* The “findings are a call to take delirium more seriously.”
* A clinician not involved in the study “said this study had tremendous health implications. ‘This creates an amazing impetus for public health agents to focus on delirium prevention as a way to reduce the negative burden on brain health.’ Almost half of cases are preventable by simple, inexpensive methods, ensuring people get optimal sleep, pain medication, fluids, and exercise in the hospital, he said (Hshieh et al., 2015).”
Here’s a link to the Alzforum article:
www.alzforum.org/news/research-news/delirium-makes-its-own-mark-cognitive-decline
Delirium Makes its Own Mark on Cognitive Decline
Alzforum
03 Feb 2017
Robin
Compassionate communication and managing difficult behaviors
Brain Support Network had an exhibitor table at the December 2016 Alzheimer’s Association “Circle of Care” conference in Foster City. Steven Russell staffed our exhibitor table, where he talked to people about brain donation and our local support group for those with non-AD dementias. He also had the opportunity to attend a few of the break-out sessions. Copied below are his notes from the break-out session on “Managing difficult behaviors.”
During the break-out session, a handout on “Compassionate Communication” was reviewed. The handout offers “do’s” and “don’ts” of communicating with someone with memory impairment. You can find my previous post from 2008 about this terrific handout:
www.brainsupportnetwork.org/compassionate-communication-dos-and-donts/
Two key lines from the “Compassionate Communication” handout are:
“You can’t control memory loss, only your reaction to it. Compassionate communication will significantly heighten quality of life.”
Words to live by as caregivers!
Robin
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Steven’s Notes
Managing Difficult Behaviors
Session led by: Alexandra Morris, Alzheimer’s Association
Circle of Care Conference, December 2016
Ms. Morris spent a good deal of time describing some typical dementia behaviors, why they occur and how to change or redirect these behaviors.
Ms. Morris reminded all of us that dementia behaviors are not deliberate. The care recipient has a disease and is exerting all of his or her energy to do the best they can with their disease. Expending so much effort when trying to communicate and have the care recipient’s needs met can lead to “sundowning” at the end of the day.
Additional dementia behaviors can include repetitive questions, hiding/hoarding objects, delusions and hallucinations, suspicion, wandering and hitting. Besides exhaustion what leads to these behaviors? Here are some ideas.
The care recipient is a person who
– is an adult and doesn’t like being disrespected or under someone’s control
– is trying to get his or her needs met
– needs connection and purpose
– lacks insight into his or her condition
– is doing the best he or she can to deal with the cognitive challenges being experienced
– is suffering from delusions or anxiety
– is irritated at something the caregiver said or did.
Ms. Morris gave us several tips to dealing with behaviors:
– Kindness versus Truth – “white lies” are better than anger, hurt or causing fear
– Appeal to the care recipient’s motivation (this may require practice to carry off successfully)
– Always say “yes” to a request. If the outcome could endanger the care recipient, redirect to something safer as soon as possible.
– Don’t try to reason with or over-explain something to the care recipient
– If communication gets stuck, stop. Try physical movement to get unstuck (touch, gently direct the person towards where thy need to go).
– Tell a story – “I wondered about that…” “I’ll have to look into that…”
Probably one of the most difficult challenges happens when the care partner knows that a topic will agitate the person. Here are some tips:
– Determine if the conversation must be raised at all
– Interject with ” I have a question…”
– Change location
– Appeal to the person’s emotions, not the topic itself
– Use humor to defuse a charged situation
– Tell a “therapeutic fib” that helps move the conversation along without frightening the care recipient.
Every behavior has a purpose. You may have to put on your detective hat to determine what the purpose is.
– Let the issue go (“So what?”)
– Alter the situation to make it acceptable
– Keep responses and behavior slow, simple and calming
– Re-frame the issue/redirect to a more comfortable place
– Beg forgiveness rather than ask permission
Ms. Morris reminded the audience that as a care partner you can’t control memory loss, only your reaction to it. Remember that the care recipient’s disability is memory loss. Testing memory, lecturing the care recipient on their inability to find words or express appropriate emotions leads to suffering for all involved. Instead refer only to the future (when the person with dementia mentions they want food, instead of saying “You ate an hour ago” say ” Why don’t I fix something for you in a bit?”). Don’t use open-ended questions or try to initiate multi-step processes. Give the care recipient a simple choice between two items or direct their choice -“you look great in the green shirt.”
Finally, Ms Morris mentioned that the goal is to make life more calm and enjoyable for both you as care partner and for the care recipient. As you reassure the person remember that the care recipient cannot remember this reassurance. You’ll need to remind him or her each time.
“Medicare’s Coverage of Therapy Services Again Is In Center of Court Dispute” (KHN)
Incredibly, Medicare officials and consumer advocates are back in court again over the denial of therapy services (PT, OT, ST) to Medicare patients.
Here are some highlights from yesterday’s Kaiser Health News article:
* “Four years after Medicare officials agreed in a landmark court settlement that seniors cannot be denied coverage for physical therapy and other skilled care simply because their condition is not improving, patients are still being turned away. … The settlement affects care provided by a trained professional in a patient’s home, nursing home or the provider’s private office that is medically necessary to maintain the patient’s condition and prevent deterioration.”
* “Several organizations report that the government’s initial education campaign following the settlement has failed.”
* “‘We still regularly get calls from people who are told they are being denied coverage,’ said Peter Schmidt at the National Parkinson Foundation, based in Miami. Denials sometimes occur because physical therapy providers use a billing code that still requires the patient to show improvement. Although Parkinson’s is a degenerative brain disease, Schmidt said physical therapy and exercise can help slow its progress.
* “‘There was a long-standing kind of mythical policy that Medicare contractors put into place that said Medicare only pays for services if the patient could progress,’ said Roshunda Drummond-Dye, director of regulatory affairs for the American Physical Therapy Association. ‘It takes extensive effort to erase that.'”
Here’s a link to the full article:
khn.org/news/medicares-coverage-of-therapy-services-again-is-in-center-of-court-dispute/
Medicare’s Coverage Of Therapy Services Again Is In Center Of Court Dispute
Kaiser Health News
By Susan Jaffe
January 30, 2017
Robin