Category Archives: LBD

“The Hazards of Leaving the Hospital” and Planning for a Caregiver Emergency

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This short article is about “post-hospital syndrome,” or the “wide range of adverse health events and complications” that result from the physical and emotional stress of being in the hospital.  Nearly one-fifth of Medicare patients end up being re-admitted to the hospital within 30 days.  Those who have been in the hospital need a long time to recover from the experience.

Part of the reason I’m sending out this article is to share the recent story of a local support group member who is the caregiver to her husband with Lewy Body Dementia.  The woman was experiencing bowel pain, and saw her doctor.  He ordered immediate surgery.  She was supposed to be in the hospital for 10 days but is still there 30 days later.  When she is finally discharged from the hospital, she will have to go to a skilled nursing facility.  Their son has had to step in to take care of both parents, neither of whom can really help now with decisions or planning.  The woman did not have a medical power-of-attorney that included her son; it had only included her husband.  And the woman had never thought about what might happen if she were in crisis.

It’s really important for caregivers to plan for the scenario of their ending up in the hospital on an emergency basis!  At least think about this.  Include your adult children or close friends in your thoughts.  Whose in charge?  Will this person have access to money?  Will this person know about your medical insurance?  What agency should be hired to care for the person with a neurological condition?  What care facility should the person with a neurological condition be moved to?

Here’s a link to the article on post-hospital syndrome:

online.wsj.com/article/SB10001424127887323826704578353131038599350.html

Journal Reports
The Hazards of Leaving the Hospital
The days and weeks after patients are sent home can be dangerous. Here’s how to avoid being readmitted.
Wall Street Journal
By Laura Landro
Updated March 15, 2013, 4:14 p.m. ET

Robin

Drugs to avoid or be cautious of in the elderly (2-page Canadian cheat-sheet)

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Group member Dorothy emailed me this link recently:

www.rxfiles.ca/rxfiles/uploads/documents/psyc-elderly.pdf

Psychotropic Drugs in the Elderly
Treatment Considerations
Sept 2011
The RxFiles Academic Detailing Program
Saskatoon City Hospital

It’s sort of like a two-page “cheat sheet” for medical professionals on:

  • what medications the elderly should avoid or be cautious of
  • suggested medications for depression, insomnia, pain, psychosis, agitation, anxiety, etc.
  • how to assess and treat what are known as BPSD (behavioral and psychological symptoms of dementia)

Throughout the cheat sheet, the acronym SE is used.  This refers to “side effects.”

One thing that is obviously missing — but it’s not part of this chart
— is what medications to avoid if dealing with a person with
Parkinson’s Disease or parkinsonism.  For example, some medications have anti-dopamine effects, and they shouldn’t be given to people to parkinsonism.  A less-sophisticated but more user-friendly list of medications to avoid with PD can be found here:

www.apdaparkinson.org/userfiles/files/Medications%20to%20be%20Avoided%207-11.pdf

If you find other things missing or items you would take issue with on the “cheat sheet,” please let me know!  This is the sort of document where more than one reviewer is needed as it’s densely-packed with details.

Robin

 

Three Stanford Studies Recruiting PDD, PSP, MSA, CBD or healthy controls

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Two researchers at Stanford’s Movement Disorders Center are recruiting participants for three research studies who have PDD (rather than DLB), PSP, MSA, or CBD, or are healthy controls.

Dr. Kathleen Poston mentioned both of her studies are the October 2012 atypical parkinsonism symposium during the MSA break-out session, so that may not be new info to those who attended her session.  (And I know several in our group – both those with MSA and their healthy caregivers – have participated.  Thank you!)

You do NOT have to be a Stanford patient or Stanford family to
participate.  Details of the three studies follow.

Robin

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LOOKING FOR THOSE PDD (PARKINSON’S DISEASE DEMENTIA) AND HEALTHY CONTROLS

Development of multimodal imaging biomarkers for cognitive dysfunction in Parkinson’s disease

Principal Investigator:  Kathleen Poston, MD, MS.  This study is
funded by the Michael J. Fox Foundation for Parkinson’s Research.

Contact Info:  Sophie YorkWilliams, (650) 774-8688

We are recruiting:
1: Any persons with a diagnosis of Parkinson’s disease with all levels of memory ability.
2. Any healthy persons between the age of 45-95, who do not have PD, memory problems, or any other neurological disorder.

Study participants will receive at no cost:  brain imaging (MRI), a memory evaluation, a clinical evaluation, and genetic testing.

The purpose of this study:  To better understand brain networks and biological markers associated with memory changes in Parkinson’s disease, and to find ways of detecting these changes before memory problems develop.

LOOKING FOR THOSE WITH MSA, PSP, OR CBD

Early Differential Diagnosis of Parkinsonism with Metabolic Imaging and Pattern Analysis

Principal Investigator:  Kathleen Poston, MD, MS.  This study is
funded by the NIH.

Contact Info:  Hadar Keren-Gille, (650) 724-4131

We are recruiting:
1: People with an established clinical diagnosis of PD, MSA, PSP, or CBD
2: Any person with a parkinsonian diagnosis within the last 2 years, who is not on any levodopa (sinemet) or dopamine agonists
(ropinirole/Requipe or pramipexole/Mirapex).  Rasagiline (Azilect) or selegiline are OK.
3. Any person with REM Sleep Behavior Disorder (RBD), but no other neurological diagnosis.

Study participants will receive at no cost:  brain imaging (MRI and PET), a memory evaluation, and a clinical evaluation.

The purpose of this study:  To develop imaging markers that will more accurately diagnose parkinsonian disorders, such as Parkinson’s disease, Multiple System Atrophy, Progressive Supranuclear Palsy, and Corticobasal Degeneration.

LOOKING FOR THOSE WITH MSA OR PSP

Fine, limb and axial motor control study of people with MSA and PSP

Principal Investigator:  Helen Bronte-Stewart, MD, MSE

Contact Info:  Lauren A. Shreve, (650) 855-4656

We are recruiting:
1.  People with diagnosed MSA-P or -C and PSP, who can stand
unassisted in the off medication state.
2.  Healthy age-matched (older) control subjects.

Purpose:  We plan to compare fine and large motor kinematics with those from people with PD.

 

“I’m Still Here” Approach to Those With Dementia

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John Zeisel, PhD, has developed a philosophy called “I’m Still Here” about how we treat someone with dementia.  He says that people with dementia can have a life worth living.

There will be a PBS special in March titled “Hopeful Aging” that will review Dr. Zeisel’s philosophy.  There’s a 4-minute trailer to the PBS special here:

www.youtube.com/watch?v=-2IY7MhkUVk

In the trailer, he notes that there are seven myths about people with dementia:

1.  They can’t remember.
2.  They lose their identity.
3.  They have no attention span.
4.  They can’t make decisions.
5.  There’s always an aggressive phase.
6.  They can’t enjoy anything because they forget.
7.  They can’t learn.

He says it’s natural to believe that our loved ones with dementia are not there, but it’s not always the case.

Here’s a blurb about “Hopeful Aging” published in Alzheimer’s Daily News:

“Journey through the aging brain with Dr. John Zeisel, explore the possibilities of learning and connection at any stage of life and discover proven strategies that help anyone get the best out of later life. Hopeful Aging is a program that focuses on the journey of brain aging. It brings together proven strategies to help everyone get the most out of their later life by harnessing the lessons of neuroscience with a revolutionary learning technique called C-MAP. Utilizing the principles in Hopeful Aging, viewers will see how a different approach to dementia and Alzheimers can help create a life worth living.”

Robin

Therapy Even if No Improvement – Big Change to Medicare Rules

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Back in October 2012, it was reported that a settlement had been proposed that would affect skilled nursing home stays as well as home health and home therapy services for those with Medicare.

This Monday, the New York Times reported that Congress also took action to allow exceptions to what Medicare pays for physical, occupational, and speech therapy.  Plus, the proposed settlement had been approved by the court; Medicare is now prohibited from denying patients coverage for “skilled nursing care, home health services or outpatient therapy because they had reached a ‘plateau,’ and their conditions were not improving.”

This will have an impact on Medicare beneficiaries who have PSP, CBD, MSA, and DLB diagnoses.

The Center for Medicare Advocacy (different from the Centers for Medicare & Medicaid Services), has a webpage devoted to “explaining how to challenge a denial of coverage that is based on the lack of improvement.”  See:

www.medicareadvocacy.org/take-action/self-help-packets-for-medicare-appeals/

And, the Center for Medicare Advocacy “advises beneficiaries to show a copy of the settlement — also available from the Web site — to your health care provider at your next physical therapy appointment if you are concerned about losing Medicare coverage.”

See a highlighted copy of the settlement:

www.medicareadvocacy.org/wp-content/uploads/2012/12/Settlement-Agreement-for-Web.pdf

Here’s a link to the NYT article:

newoldage.blogs.nytimes.com/2013/02/04/therapy-plateau-no-longer-ends-coverage

The New Old Age: Caring and Coping
Finances & Legalities 
Therapy Plateau No Longer Ends Coverage
New York Times
By Susan Jaffe
February 4, 2013, 7:49 am

Robin