New NIH Booklet on Lewy Body Dementia

Someone at the Alzheimer’s Disease Education & Referral Center at the NIA (National Institute on Aging – part of NIH) sent me a couple of copies of this new NIA booklet on Lewy Body Dementia, published in September 2013.  I will bring the two copies I have to the next caregiver support group meeting, and lend them out.

You can order a print copy yourself here:  (free of charge)

www.nia.nih.gov/alzheimers/publication/lewy-body-dementia

Alternatively, you can print your own copy from this PDF or read it online here:

lbda.org/sites/default/files/lewybodydementia-final_11-6-13.pdf

I think the booklet’s review of symptoms and how to manage/treat these symptoms is good.

Three points made in the booklet were wrong, as far as I’m concerned:

1.  “LBD can occur alone or along with Alzheimer’s or Parkinson’s disease.”

Robin’s comment:  Yes, LBD frequently co-occurs with Alzheimer’s Disease.  But it never co-occurs with Parkinson’s Disease.  You can make a good argument that Parkinson’s Disease Dementia — one type of LBD — *is* Parkinson’s Disease.  And many neurologists make the argument that Dementia with Lewy Bodies — another type of LBD — *is* Parkinson’s Disease.  I have never heard *any* LBD expert say that LBD co-occurs with Parkinson’s.

2.  “It’s important to know which type of LBD a person has, both to tailor treatment to particular symptoms and to understand how the disease will likely progress.”

Robin’s comment:  There are two types of LBD — DLB and PDD.  Treatment is tailored to symptoms present, not which type of LBD a person has.  Also, I’m not sure how knowing the type of LBD will help one understand how the disease will progress.  Survival time is shorter in DLB than PDD but the progression is quite individual.

3.  “(LBD) represents an important link between (Alzheimer’s and Parkinson’s).”

Robin’s comment:  The link between LBD and Alzheimer’s is unclear to me.  Yes, LBD frequently co-occurs with AD but the two disorders have little in common.

There were a few other items that could’ve used further clarification:

4.  “Many LBD experts prefer quetiapine or clozapine to control different behavioral symptoms.”

Robin’s comment:  This is certainly true.  But, in some with LBD, even these preferred medications can cause neuroleptic malignant syndrome.

5.  “Urinary incontinence should be treated cautiously…”

Robin’s comment:  This is certainly true.  I wish more had been said about treatment of this symptom as it’s a very common symptom.

6.  Like nearly all other publications I’ve seen for lay people, this booklet conflates DLB and PDD.  They actually have different diagnostic criteria but you wouldn’t know it from this publication.

If you find worthwhile items in the booklet, please let me know!

Robin

“Medicare rules create a booming business in hospice care for people who aren’t dying”

There’s a good article in yesterday’s Washington Post about the financial incentives for for-profit hospice agencies.

Here are key excerpts:

  • “In 2011, nearly 60 percent of Medicare’s hospice expenditure of $13.8 billion went toward patients who stay on hospice care longer than six months, MedPAC, the Medicare watchdog group created by Congress, has reported.”
  • “But much of the data suggests that the trend toward longer stays is a response to the financial incentive.:
  • “Consider the difference between the nonprofit and for-profit hospices: While the average nonprofit serves a patient for 69 days, the average for-profit hospice serves a patient for an average of 102 days, according to MedPAC.”

Here’s a link to the article:

www.washingtonpost.com/business/economy/medicare-rules-create-a-booming-business-in-hospice-care-for-people-who-arent-dying/2013/12/26/4ff75bbe-68c9-11e3-ae56-22de072140a2_story.html

Economy
Medicare rules create a booming business in hospice care for people who aren’t dying
The Washington Post
By Peter Whoriskey and Dan Keating
December 26, 2013

Robin

 

Gadgets for older adults (GeriPal blog, 12/14/13)

Today I learned about the GeriPal, a “geriatrics and palliative care blog.”  It’s the creation of two UCSF geriatricians.

In a recent blog post by a UCSF research fellow (12/14/13), a list of gift ideas for older adults was offered.  There are a lot of worthwhile ideas here – not just for holiday gifts but for any-time purchases.  Ideas include:

Jar openers
Scooped bowl
Reacher/Grabber
Handy bar
Arrange for services
Cool canes
Pill boxes
Traction socks
Gift cards for transportation services
Chair exercise videos
Brain games
Bright lighting
Magnifying glass
Visit and do household chore
Treats
Personal sound amplifier
TV amplifier
Music
Induction burner for stove
Medication-reminder clock
Inflatable lift
Sling
Therababy
iPad
Calendar of family photos
Geripet

You have to check out the blog for all the links and comments about these wonderful ideas:

www.geripal.org/2013/12/what-to-give-uncle-ernie-grandma-mabel.html

What to give Uncle Ernie, Grandma Mabel and Great Aunt Rose?
Geripal
By Anna Chodos

Robin

Iron Chef is Battling MSA (Las Vegas Sun, 12/12/13)

Last week, a news story was published in the Las Vegas Sun newspaper about the “Iron Chef” winner having MSA.  The author is journalist Robin Leach, a friend of the chef’s.

The 58-year-old chef, Kerry Simon, owns many restaurants around the US, and lives in Las Vegas.  It seems he was diagnosed at the Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas, perhaps three years ago.  Mr. Simon has had symptoms for five years, including slow movements, fatigue, pain, and poor balance.  He’s now in a wheelchair fulltime.

This article describes MSA as an “aggressive form of Parkinson’s.”  He’s gone public with his diagnosis in order to “inspire others to have courage and faith that there will one day be a cure.”

The article notes that Mr. Simon is going to undergo “stem cell” treatment but no details are given.  Mr. Simon has his own website but there’s nothing about MSA there.  ….yet?

Here’s a link to the Las Vegas Sun article:  (posted today to one of the MSA-related online support groups)

lasvegassun.com/vegasdeluxe/2013/dec/12/chef-kerry-simon-battling-aggressive-form-parkinso/

Chef Kerry Simon is battling aggressive form of Parkinsons: ‘The long-term diagnosis is not good’
Las Vegas Sun
By Robin Leach
Thursday, Dec. 12, 2013 | 2 a.m.

Robin

“Easing the Added Stress of Caregiving During the Holidays”

I was looking for articles on caregiver stress around the holidays, and stumbled across this one.  It’s on a website, 4therapy.com, with information about therapy, depression, etc.

Here’s an excerpt:

Stress occurs when we work too much, sleep too little, try to cope with difficult or troubling situations, and when we neglect to take good care of ourselves — all of which are typically everyday state of conditions for the millions of Americans who find themselves in the role of caregiver to an older frail, ill, or disabled relative. The added physical and emotional demands that are involved in celebrating the holidays can add to an already heavy load of caregiving responsibilities and cause feelings of stress to soar.

The article offers a long list of suggestions for family caregivers to help ease holiday stress, including:

  • Set manageable expectations and limits for yourself. Be realistic about what you can and cannot do — as well as what you want to do and don’t want to do.
  • Ask for and accept help!
  • Maintain or establish social interaction with friends and other family members. Isolation can further increase feelings of stress. Having the chance to have fun, laugh, and focus on something other than your at-home caregiving responsibilities can help you keep stress at bay and maintain emotional balance.
  • Seek emotional and moral support from other caregivers — there is great strength in knowing you are not alone.
  • Use community resources such as meal or shopping services, home-care aides, adult day services, and/or volunteer help from faith-based organizations or civic groups.
  • Try to find time for yourself to do something you especially enjoy such as reading, walking, listening to music, gardening and/or visiting with a friend.
  • Find ways to ensure you get enough rest.

Here’s a link to the article:

www.4therapy.com/life-topics/aging/easing-added-stress-caregiving-during-holidays-2435

Easing the Added Stress of Caregiving During the Holidays
Source:  4therapy.com

Robin

 

Why some recover more quickly after a fall injury than others (NYT, 11-15-13)

This New York Times article is about what happens after a fall, and why some recover more quickly than others from a fall injury.  The author describes research findings:

“A group of researchers at Yale, closely following a group of 754 older adults for nearly 14 years, has monitored disability before and after a fall injury and found that recovery is more predictable than we might think. The big clue, obvious only in retrospect: People with only minor disabilities, or none, before the fall are far more likely to recover, either quickly or gradually. Among those already severely disabled, the prognosis is much more grim.” 

Also, researchers learned that the most severe fall-related injury came from hip fractures.

How would a patient’s level of ability before a fall guide his/her treatment after a fall?  A geriatrician said that for those with no disability before the fall, “you really want to be aggressive” with treatment.

For those with greater disability before the fall, the chances of recovery are diminished.  “Palliative care — helpful in reducing the pain that often accompanies fall injuries — might make more sense, while extended physical therapy might be of little help.”

I wonder if the person who had greater disability before the fall, and therefore a poor prognosis at recovering after the fall, would be willing to accept palliative care, rather than extended physical therapy.  And I wonder if that person’s family would accept that treatment plan…?

Here’s a link to the article:

newoldage.blogs.nytimes.com/2013/11/15/predicting-a-falls-aftermath/

The New Old Age
Why a Fall Is Worse For Some
The New York Times
By Paula Span
15 November 2013

Robin

“Have you lined up all your ducks?”

I saw this useful reminder in the Stockton Parkinson’s Disease support group newsletter sent out over the weekend.  It was written by Christy Carruthers, a caregiver in the group.  This is probably a good end-of-year activity every year.

Robin


Have you lined up all your ducks?
Christy Carruthers, Parkinson’s Caregiver
Stockton

Your named beneficiaries on your pension, portfolios, insurance policies, bank accounts, etc., that is.  Did you know named beneficiaries will trump whatever you stipulated in your trust or will? And you once you’ve passed on, you can’t fix it – sorry.  Pull out those documents and check them-is your first spouse named on your pension and you’ve remarried?  Did you have more children after you listed your first born as inheriting on your financial documents?

It’s a good idea to also visit your estate planning attorney and have your trust or will updated if your circumstances have changed.  Every five years is a useful guideline.

Is your current house in your trust (have you moved)?  Is your trust “funded?”-i.e. is your house, other assets, etc. listed with your trust named as the owner-not you.  (Don’t want to go through probate thank you very much and it’s expensive).

And a durable power of attorney for your spouse can be more important than you realize.

 

Re-consider Medicare Part D Before December 7th

This post is only of interest to those who are eligible for Medicare.  Open enrollment ends next Saturday, December 7th.

Medicare Part D is the prescription drug plan benefit.  Apparently 90% of those enrolled in these plans don’t ever bother to re-consider their plan choice during the open enrollment period.  The 10% of people who do switch plans often lower their out-of-pocket drug costs.  When I was managing my father’s Medicare plans, I found that there was huge price variability among the hundred or so drug plans for which he was eligible.

The Kaiser Family Foundation released a report in November about the “inattention” of 23 million Americans who have a Part D drug plan.

For more, read the Kaiser report here:

kff.org/medicare/issue-brief/to-switch-or-not-to-switch-are-medicare-beneficiaries-switching-drug-plans-to-save-money/

Or there’s a related New York Times article here:

newoldage.blogs.nytimes.com/2013/11/06/slow-dancing-with-part-d/

Robin