“Seeking the Line Between Grieving and Depression” (WSJ)

There’s a good article in today’s Wall Street Journal (wsj.com) about whether grieving people are clinically depressed.  The article centers upon the experience and thoughts of Johns Hopkins professor Kay Jamison, who has written about her struggles with bipolar disorder and also lost a spouse.  Ms. Jamison compares grief and depression — both of which she has suffered.

Here’s a link:

blogs.wsj.com/health/2012/05/07/seeking-the-line-between-grieving-and-depression/

Health Blog
Seeking the Line Between Grieving and Depression
Wall Street Journal
By Shirley S. Wang
May 7, 2012, 4:06 PM

Abnormal Proteins and Genetics in Frontotemporal Dementia

Yesterday’s New York Times had a good article on three proteins involved in frontotemporal dementia (FTD) and the research being done at at the University of California San Francisco (UCSF) on these proteins.  Genetics are also addressed in this article.

In FTD, 40% of cases involve tau (which is also part of PSP, CBD, and Alzheimer’s Disease), 50% of cases involve TDP-43, and 10% of cases involve FUS.  There is a genetic component to about half of all FTD cases.

Dr. Bruce Miller at UCSF’s Memory and Aging Clinic comments on how to find those with FTD who are early in the disease course:

“What is so fascinating about this is, what do you define as ‘affected’ in somebody who carries a gene that is going to cause a slow, subtle social decline? What are good markers for someone who is starting to get sick? Addictive behaviors ­ drugs, alcohol, gambling ­ bad decision-making, alienation of other people around them. These are things that we never realized could represent the first symptoms of a degenerative disease.”

Here’s a link to the full article:

www.nytimes.com/2012/05/06/health/tying-genes-and-proteins-to-dementia.html

May 5, 2012
The New York Times
Studies Tie Abnormal Protein Buildup to Dementia
By Denise Grady

A few excerpts are copied below.

Robin


 

Excerpts from

Studies Tie Abnormal Protein Buildup to Dementia
New York Times
By Denise Grady
May 5, 2012

Scientists think that abnormal protein deposits inside brain cells
cause frontotemporal degeneration. The proteins vary, but they do not
include amyloid, the substance found in Alzheimer’s patients.

In about 40 percent of patients, the deposits are an abnormal form of
a protein called tau, which normally gives structural support to brain
cells. (Tau is also one of the proteins found in Alzheimer’s
patients.)

Two other types of deposits are abnormal versions of proteins involved
in other cell functions. In about half of all patients with
frontotemporal dementia, the protein is one known as TDP-43, and in
about 10 percent it is a substance called FUS.

But why do these protein deposits form? Often, the underlying reason
is not known.

At least half of all cases are sporadic, in people with no family
history of the disease and no known genetic disorder. About 40 percent
of patients do have a family history, and some may have an
identifiable genetic mutation.

In the remaining 10 percent…the disease is definitely inherited: a
dominant gene makes the symptoms inevitable, sometimes as early in
life as the 30s or 40s, in anyone who inherits a copy from an affected
parent. And each child of an affected parent has a 50-50 chance of
inheriting the bad gene.

So far, most inherited cases have been linked to mutations in two
genes, both on the same chromosome, number 17. One gene codes for tau.
The other gene codes for a protein called progranulin and causes a
deficiency of it, which appears linked to the buildup of TDP-43. Three
other genes are involved in some cases, and researchers are looking
for still more.

 

“When Illness Makes a Spouse a Stranger”

Yesterday’s New York Times had a terrific general story about dementia turning a spouse into a stranger.  Those within Brain Support Network dealing with LBD, PSP, and CBD may find this article of interest.

It’s the story of a Manhattan-based couple.  Before the husband was diagnosed with frontotemporal dementia in his 60s, the wife was considering divorce.  The wife talks about losing control when dealing with her husband, and grieving though he’s still alive.  Eventually, the wife had to place him in a care facility for both of their safety.  She spends several hours a day with him.

The wife notes that MDs are at a loss to forecast the progression:

“They can tell you everything that’s ever happened to anyone, but they can’t tell you what’s going to happen to you,” she said.

Here’s a touching video about this couple:

www.nytimes.com/video/health/100000001343193/in-love-and-loss.html

Dr. Bruce Miller from UCSF’s Memory & Aging Center is quoted frequently as UCSF is one of the lead institutions in the US for FTD research.  He says:

“I think at least some subtypes of frontotemporal dementia will be the first neurodegenerative diseases we find a cure for.” 

According to this article, there are eight sub-types of FTD.  Sometimes CBD and, less often, PSP are considered FTD sub-types.

The first article has a short mention of Richard Rainwater, who has PSP:

“But even if treatments or cures for frontotemporal dementia do emerge, they will almost certainly come too late for people with advanced cases, like … Richard Rainwater, a billionaire investor who learned in 2009 that he had progressive supranuclear palsy, which some consider a form of frontotemporal dementia. Mr. Rainwater and his family have donated more than $20 million to a research consortium, but given that he has a rapidly progressive form, any advances from the consortium may be more likely to help others than to save him.”

(I assume that if Mr. Rainwater has a “rapidly progressive form” of PSP, this means he has the Richardson’s Syndrome form, which includes dementia as a primary symptom.)

Here’s a link to the full article:

www.nytimes.com/2012/05/06/health/a-rare-form-of-dementia-tests-a-vow-of-for-better-for-worse.html

New York Times
The Vanishing Mind
When Illness Makes a Spouse a Stranger
By Denise Grady
May 5, 2012

Robin

 

“Treasures in the Darkness”- new book for early stage LBD

A few of you visit the LBDA Forum (lbda.org). One of the Forum members is “pat,” who is Pat Snyder from North Carolina. In April 2012, her book titled “Treasures in the Darkness: Extended Early Stage of Lewy Body Dementia, Alzheimer’s, and Parkinson’s Disease” was published. It’s for families dealing with early-stages. She said that when her husband John was diagnosed with LBD in 2007, there was no “survival manual” or guidance on handling the early stage. She describes him as still being in the early stage of LBD, five years later.

I’m not sure why AD and PD were added to the title. Perhaps because not many have heard of “Lewy Body Dementia”?

If anyone gets the book and is willing to donate it to the support group after you’ve read it, you are welcome to do so! We have quite a few books circulating among group members — most of the copies have been donated by group members.

Robin

Here’s a short description from amazon.com:

“Your husband has Lewy Body Disease. It has elements of Alzheimer’s and Parkinson’s disease.” How do you cope when you hear those horrible words? Are there medicines that can help with symptoms? Is there no hope? If your loved one is in the early stage, there is hope. As a caregiver there are things you can do for a person with degenerative cognitive disease to make your daily lives better. There may even be blessings you never thought could happen to you in this journey. This book is about that very thing. It is real. It happened. Some of it happened because of the choices made by a caregiver who would not settle for a “gloom and doom life is all over” approach. It is a first of its kind. There is no other book that addresses the topic of enhancing and extending the early stage of LBD. If you are an early stage caregiver, this story may help you. It has tips on how to make a difference.

Discovering The True Cost Of At-Home Caregiving (NPR story)

Yesterday, NPR had a terrific series on caregiving called “Family Matters.”  One segment was about the true cost of at-home caregiving.  Here’s a link to the story:

www.npr.org/2012/05/01/151472617/discovering-the-true-cost-of-at-home-caregiving

Discovering The True Cost Of At-Home Caregiving
by Marilyn Geewax
Morning Edition [4 min 6 sec] Part of the Family Matters series
May 1, 2012

The transcript is copied below.

Robin

————————

Walk through any nursing home, and your first thought might be: “I need to take care of Mom myself.”

Few people want to turn over a loved one to institutional care. No matter how good the nursing home, it may seem cold and impersonal — and very expensive. But making the choice to provide care yourself is fraught with financial risks and personal sacrifices.

Those who become full-time caregivers often look back and wish they had taken the time to better understand the financial position they would be getting themselves into.

“I used to hear about people saying, ‘Oh you know, we’ve got to put our parents in a home; we can’t deal with it anymore,’ ” said Yolanda Hunter, 43, a Maryland resident who is struggling with her decision to drop out of the human resources field to become a full-time caregiver for her grandmother. “And I used to think: ‘Oh, how cruel are you?’

“You know, but now? I understand,” she said.

Hunter belongs to one of three families being profiled in NPR’s eight-week series, Family Matters: The Money Squeeze, which airs each Tuesday on Morning Edition. Each family is struggling with how to afford care for an older generation. The do-it-yourself approach is both common and costly.

Caregiver advocacy groups say Congress needs to be doing more with tax credits and Social Security benefits to help financially support those who choose to care for the elderly.

The demands for such assistance may grow louder, given the demographic changes coming in our aging society.

Nearly 10 million people over the age of 50 are caring for their aging parents, according to a study conducted by the MetLife Mature Market Institute, in conjunction with the National Alliance for Caregiving and the New York Medical College. The number of caregivers has more than tripled over the past 15 years.

That increase reflects medical advances and the resulting increase in human longevity. As the average age of death has moved from 68 in 1950 to nearly 79 now, the ranks of the elderly have grown. Today, about 6 million U.S. residents are over 85.

As a result, the personal cost of caring for the elderly at home is rising —in terms of lost wages and diminished pension and Social Security benefits, the MetLife study concluded.

Studies estimate that 2 out of 3 informal caregivers are women, many of whom are middle-aged mothers with children or adult children living in their households.

The cost of putting a parent into professional assisted-living care can be daunting. MetLife says that kind of care averages about $42,000 a year. A private room in a nursing home averages more than $87,000. But the cost of keeping a relative at home can be very high too.

The MetLife report said that for the typical woman, the lost wages due to dropping out of the labor force because of adult caregiving responsibilities averages nearly $143,000. That figure reflects the wages lost while not working — typically for about five years — as well as lower wages after returning to the workforce with rusty skills. When foregone pension and Social Security benefits are counted, the out-of-pocket losses roughly double.

“Family caregivers are themselves aging and yet are providing care at a time when they also need to plan and save for their own retirement,” MetLife said. The people who drop out of the workforce “can jeopardize their future financial security,” the study concluded.

Hunter has discovered just that. She quit her job to become an in-home helper for her 89-year-old grandmother, Ida Christian, who has Alzheimer’s disease. Christian lives with her daughter, Geneva Hunter, 66, who runs secretarial operations at a Washington, D.C., law firm. Yolanda Hunter has an apartment a few minutes away from her mother and grandmother.

Like many other caregivers, Yolanda Hunter thought the “job” of watching over her grandmother would not last all that long. Her thoughts at the time she quit her job: “I can do this for a year, help settle things down, try and take the pressure off a little bit,” she said.

Her goal was to find a good home nursing aide to help her grandmother so that she could jump back into the workforce. But two-and-a-half years later, it “didn’t quite work out that way,” she says.

Although Christian’s savings are enough to provide a modest salary for her granddaughter, the amount is not great enough to allow Hunter to prepare for her own retirement.

So Hunter had to switch gears again and begin trying to re-enter the labor market at a time when nearly 13 million other people also were seeking work.

As this year began, she said she recognized that “I desperately want to get back to work, because I’m mentally tired and I feel — unless I win the lottery — I feel like I’m missing out on so much in terms of my future and making sure I have a stable future.”

But then again, “there’s that part of me that is very, very torn about leaving her, because no matter how compassionate the next person may be, they’re not going to do the extra things that you’re going to do,” she said.

Some women’s groups say Congress should expand tax credits available to people with dependent relatives and create “caregiving credits” to limit the Social Security penalty for time spent out of the labor force to provide family care.

The Caregiver Credit Campaign, an advocacy effort, says such help is warranted because without voluntary caregivers, “hundreds of billions of government dollars would be spent on alternatives like institutions.”

An Indiana University report says “informal caregivers provide service that would otherwise cost the Medicare system $375 billion a year.”

Meryl Comer, president of the Geoffrey Beene Foundation Alzheimer’s Initiative, knows about the financial penalties of caregiving. At age 50, she was a journalist, living in a Maryland suburb outside of Washington, D.C. Then her husband, age 58 at the time, was stricken with early-onset Alzheimer’s.

She quit her job to become his at-home caregiver. Then her mother got Alzheimer’s too. Now, 18 years after quitting her outside-the-home job, she continues to care for her husband and elderly mother.

She argues that corporations should do more to help their employees handle adult-care needs while staying on the job.

“How do we do provide flex time for people who are taking care of their parents?” she asked. “The human resources policies [for caring for the elderly] need to mirror the child-care policies,” she said. “If corporations want women to be productive in the workforce, they have to make some accommodations,” such as allowing them more flexible schedules, family-leave time and telecommuting opportunities.

Comer said corporations have come a long way over the past 30 years in terms of responding to the needs of working mothers with young children. “Now they have to do the same for the other end of the age spectrum,” she said.