Monthly Archives: January 2013

Leapfrog Group’s Hospital Ratings

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In a recent article in the Wall Street Journal on how patients are receiving better treatment in hospitals and from doctors, the organization Leapfrog Group is mentioned in a short paragraph:

Vetting a Hospital Gets Easier
Data on hospital quality and safety has been available online for some time, but not in a very user-friendly way. This year, the Leapfrog Group, a coalition of public and private purchasers of employee health coverage, graded hospitals, from A to F, based on measures of patient safety. Some hospitals got poor grades and took issue with the methodology, which was subsequently altered slightly. Leapfrog CEO Leah Binder says it is “the toughest standard-bearer and provides the most complete picture of a hospital’s quality and safety.” The list of 1,200 hospitals, released Dec. 4, ranks only 89 of them as top facilities. Patients can use a free website or a mobile app to compare hospitals based on overall safety or based on selected procedures such as heart bypass surgery.

You can search by state, city/state, zip code, and specific hospital. Here’s a link to the ratings of California’s hospitals:

www.leapfroggroup.org/cp?frmbmd=cp_listings&find_by=state&city=&state=CA&cols=oa

Unfortunately, lots of hospitals “declined to respond.”

Robin

“Shopping for the Right In-home Help”

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This article is from the Today’s Caregiver magazine (caregiver.com) and it’s on shopping for in-home help. I especially like the suggestion to write a job description.  Here’s a link to the article:

www.caregiver.com/articles/general/shopping_for_right_in_home_help.htm

Shopping for the Right In-home Help
By Eileen Beal, MA
Today’s Caregiver Magazine, caregiver.com
January 15, 2013

The full article is copied below.

The article recommends these two terrific resources:

#1 “A Family Caregiver’s Planner for Care at Home” by United Hospital Fund (available in English, Spanish, Chinese, and Russian)

www.nextstepincare.org/uploads/File/Guides/Care_Planner/Care_Planner.pdf

#2 “Hiring In-Home Help” by Family Caregiver Alliance

www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=407

Robin

www.caregiver.com/articles/general/shopping_for_right_in_home_help.htm

Shopping for the Right In-home Help
By Eileen Beal, MA
Today’s Caregiver Magazine, caregiver.com
January 15, 2013

When Mom and Dad are struggling to keep up with the chores, activities or medications that help them maintain their independence and health, the solution to their situation (and your concerns) could be as simple as bringing in someone to provide in-home care for a couple of hours a day.

But not before you and they have had a frank discussion about the kind of help, support and services they need – and will accept.  “You want them to feel they are a part of the decision-making process, that their wishes and wants are honored and respected,” says Mary Ellen “Mel” Roberts, LCSW, a certified care coordinator at Oklahoma City-based Elder Care Solutions.

Start by asking your loved ones (and yourself) the following questions:

* What days and times, and in what situations, might you need help?

* How much money is available to pay for outside resources, and will your insurance – including Medicare or Medicaid – cover any costs?

Home care vs. home health aide

Home care aides provide assistance with housekeeping and chores (meal preparation, shopping, errands, etc); socialization and companionship; and may also provide some personal care (bathing and grooming).  In some areas, they are called personal care assistants.

Home health aides – increasingly certified nursing assistants (CNAs) and/or state tested nursing assistants (STNA) – provide medically-related care (check blood pressure and glucose levels, dress dry wounds, empty colostomy bags, etc.); assist with therapeutic treatments prescribed by a physician; supervise medication administration; etc.

“The client’s needs and the aide’s skill-level determine what the aide’s [hourly] fee will be.  The more skills the aide has, the higher the cost,” says Debbie Adams, RN, the Director of  the Cleveland, Ohio-based Western Reserve Area Agency on Aging’s Community Services and Support Program.

Write a job description

Using the information you’ve gathered from discussing and assessing your loved ones’ needs, write a detailed job description.  Care expectations vary from client to client, so having everything in writing means everyone knows, and meets, expectations,” says Lucy Andrews, the nurse/CEO at Santa Rosa, California-based At Your Service Home Care.

A detailed job description doesn’t just “clarify expectations;” it should also influence whether to hire on your own or through an agency.

With an agency, the aide has been trained, screened and checked  – for everything from DUIs to TB –and bonded.  And they are supervised. “That,” says Adams, “includes surprise home visits.”

But there are other benefits, too.  “Clients have back-up if the scheduled caregiver can’t be there.  And an agency handles all the paperwork:  reimbursement forms, payroll, taxes, workers compensation, insurance,” says Andrews.

“And,” adds Roberts, “if you aren’t happy with the person, all you do is call the agency and say, ‘This isn’t working.’”

Hiring on your own means asking people you trust for word-of-mouth referrals and/or posting help wanted ads.  Increasingly, you can do that at on-line sites like the PHI National’s Matching Services Project (phinational.org/policy/resources/phi-matching-services-project).

And you’ll also be doing the screening, interviewing, supervision, scheduling and paperwork.   But, there’s an upside, too.  “It’s usually easier to partner with the person who’ll be coming in, and you will usually be paying less, too,” says Adams.

Do a thorough interview

If you decide to go through an agency, use the questions at the Eldercare Locator (eldercare.gov) to screen and vet the agency.  Then, use the following questions to interview the candidates they suggest and/or you find on your own:

* Can you provide me with your full name, address, phone number, current photo ID and Social Security number so that I can run a background – including credit – check? (If you’re interviewing an agency candidate, request contact information only.)

* Can you (your agency) provide me with copies of current documentation related to personal insurance, bonding, workers compensation, and your current health status (TB test, immunizations, etc.)?

* Can you (your agency) provide me with current documentation related to specific services (dementia care, CPR, etc.) you are trained/certified to provide?

* Can you (your agency) provide me with references related to past clients and employers.

* How long have you been providing care?

* Why did you leave your last position?

* What are your expectations if I hire you?

* What hours and days will you be available?

* What hourly rate do you expect, and how do you expect to be paid?

* How do you like to get feed-back and suggestions?

* What do you like and dislike about home care?

You should also ask situation-specific questions, such as: Since my mother is Jewish, can you prepare kosher foods?  Since my father doesn’t speak English well, what’s your competency in (fill in the blank)?  Since we get a lot of snow here, how reliable is your car?

In addition, download the United Hospital Fund’s “Home Care: A Family Caregiver’s Guide” (www.nextstepincare.org/uploads/File/Guides/Home_Care/Guide/Home_Care.pdf) and “A Family Caregiver’s Planner for Care at Home” (www.nextstepincare.org/uploads/File/Guides/Care_Planner/Care_Planner.pdf).

Both are full of tips and strategies for running a good interview, and for addressing the challenges that could come with employing an in-home caregiver.

Additional sources and resources

Web sites

AARP: Needs Assessment checklists
www.aarp.org/relationships/caregiving-resource-center/info-08-2010/gs_assessment_checklist.2.html

Family Caregiver Alliance: Hiring in-home help
www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=407

Family Caregiver Alliance: Handbook for long-distance caregivers
www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1034

Books (all have excellent sections/chapters on hiring in-home care)

ElderCare 911: The Caregiver’s Complete Handbook for Making Decisions
www.preferredlifestyleservices.com/eldercare-911-book

The Caregiver’s Helpbook: Powerful Tools for Caregivers
www.powerfultoolsforcaregivers.org/book-store/

The Comfort of Home: An Illustrated Step-by-Step Guide for Caregivers, 3rd Ed
comfortofhome.com/bk/

Eileen Beal is a Cleveland, Ohio-based writer who has been writing about caregiver issues for more than a decade.  This article was written with the support of a MetLife Foundation Journalists in Aging Fellowship  grant administered through New America Media (www.newamericamedia.org) and the Gerontological Society of America (www.geron.org).

 

Davunetide Study in PSP – Disappointing Results

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Tim Rittman, a clinical research fellow in neurology in the UK, recently posted to The PSP Association’s blog about the disappointing results in the davunetide clinical trial in PSP.  (UCSF was the lead institution in investigating this experimental drug.)

Here’s a link to the blog post:

www.pspassociation.org.uk/2013/01/davunetide-in-psp-disappointing-results/#more-6110

And the post is copied in full below.

Let’s hope there’s better luck next time!

Robin
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Tim Rittman
Post to The PSP Association’s Blog

Anyone looking after someone with dementia, particularly Progressive Supranuclear Palsy (PSP), can not fail to be disappointed by the recent failure of Davunetide in a phase III trial. Allon therapeutics announced just before Christmas that no clinical endpoint had shown improvement.

Whilst this is one in a growing line of failures for disease modifying treatment in dementia, some would argue Davunetide had more chance than its predecessors. Firstly, it targeted the tau protein, which builds up in and around the neurons of people with PSP. No doubt Allon were hoping that it would work, and then be taken in to trials of Alzheimer’s disease where tau is also found. Most previous drugs trials in Alzheimer’s disease have focused on beta-amyloid, another protein that can build up in the brain, but which is less certain to be a central part of the disease process and may be a tombstone of other events (for example see here). In PSP there is no amyloid, so targeting tau, and only tau, was supposed to work.

Most disappointing is that none of the secondary or exploratory endpoints showed any signs of change, although we are not told what these were. When designing a drug study, it is usual to pick hard clinical measures as a primary endpoint. I would have been hugely surprised if the primary endpoints had changed, given that the disease process in PSP is rather fast, and slowing it down once symptoms have developed is like stopping an out-of-control roller coaster. But perhaps Davunetide could have at least made a few dents in other measures, hinting that the approach to target tau was correct. I’m afraid we’re not given that comfort.

Does that mean it’s all been worthless? No. Each clinical trial has useful data in it, even if that data is not what we would wish to see. I do hope the full results see the light of day. Those who know me well also know I do not have a soft spot for drug companies. But I feel genuinely sorry for Allon. They are a relatively small company and this (commercial) failure has come as a big blow both in share price and job losses. I’m not sure whether the company can survive. If Allon does go under, I wonder what will happen to the data. The press release commented on further investigation as to why the drug didn’t work, my hope is this will be in the open and not behind closed doors under the defence of ‘commercial interests’. I’d love to get my hands on it if I could!

It is natural to pick on tau and beta-amyloid as targets for slowing down the disease. Both proteins are easily seen under even the simplest microscope, and have a long track record in lab and animal experiments. But we need to be more savvy about how we develop drugs in the future, targeting multiple pathways and developing drugs that target disease mechanisms we can’t see. This means new disease measures and new drug discovery techniques (that’s a whole different blog!). I only hope we have some encouraging news before the pharma industry turns its back on dementia completely.

 

Video of Colin Ketteringham with MSA

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Pam Bower re-posted a link to this nine-minute July 2012 UK TV interview of Colin Ketteringham, diagnosed with MSA:

www.youtube.com/watch?v=CwdWU7v7Gro&sns=tw

Colin Ketteringham is 50 years old, and used to be a truck driver.  In the TV interview, he says that his doctors expect him to live three years with MSA.

When he was diagnosed, Colin pledged to take his family to Disney World.  Some of the TV interview is spent with everyone talking and crying about the “holiday of a lifetime.”

The gymnast Olga Korbut posted the youtube link to her Facebook page.  Olga lost a fellow gymnast friend to MSA in 2011 so she’s familiar with MSA.

Robin