Saturday, April 26, 2014

Talk About It: A Simple Take on the Stigma of Mental Illness

 

Image courtesy of (David Castillo Dominici) / FreeDigitalPhotos.net
 


“We must stop criminalizing mental illness. It’s a national tragedy and scandal that the L.A. County Jail is the biggest psychiatric facility in the United States.”
— Elyn Saks
Saks knows of which she speaks.

She is Associate Dean and Orrin B. Evans professor of law, psychology, and psychiatry and the behavioral sciences at the University of Southern California Gould Law School, an expert in mental health law and a Mac­Arthur Foundation Fellowship winner. Saks lives with schizophrenia and has written about her experience with the illness in her award-winning best-selling autobiography, The Center Cannot Hold: My Journey Through Madness. She is also a cancer survivor.

Saks said, in a New York Times interview in 2011, “there’s a tremendous need to implode the myths of mental illness, to put a face on it, to show people that a diagnosis does not have to lead to a painful and oblique life.”

But, there are those who argue, as difficult as that can be to comprehend in the current dialogue, that stigmatization has its place in accepting and treating mental illness.

Especially when one considers that it’s most accepted among clinicians and the mental health community that one in four of us have suffered from or continue to suffer from a form of mental illness — be it depression, or more serious, debilitating types of mental health challenges.

Image courtesy of (David Castillo Dominici) / FreeDigitalPhotos.net
 

But, while most of us think it vile and unthinkable to stigmatize those with mental health issues, Towson University professor Richard E. Vatz wrote in the Baltimore Sun, that there are those who believe there are indeed cases for stigmatization. In making the argument, he cites one scholarly work as it refers to those in addiction treatment.

“Psychiatrist Sally Satel wrote less than a decade ago, in a piece titled ‘In Praise of Stigma’ in the work Addiction Treatment: Science and Policy for the Twenty-first Century” (The Johns Hopkins University Press, 2007) that the issue is ‘whether addicts’ behavior can be influenced by its consequences (i.e., is voluntary). The answer is that it can.’ She believes that addictive behavior should be stigmatized, but not the seeking of help or the treatment process.”\

Vatz concluded there will be cases where stigmatization is useful:

“The answer as to whether mental illness should be stigmatized is probably: “yes, in some cases; no in others.” Wherein mental problems are caused neurologically, brain disease should be viewed as all other diseases, but wherein problems are caused by individual choice, as in drug usage, people should be stigmatized to discourage their behavior.”

Of course, that’s a narrow take on the circumstances of stigmatization as it applies to mental illness.
In an October, 2004, paper presented in the journal American Psychologist, Patrick Corrigan of the University of Chicago found the very stigmatization of mental illness impedes those who are suffering from any form of mental disease impedes the treatment.

In essence, Corrigan concluded, quite plainly, that many who are mentally ill just avoid treatment or mental health services because of stigma: “namely to avoid the label of mental illness and the harm it brings… Stigma yields two kinds of harm that may impede treatment participation: It diminishes self-esteem and robs people of social opportunities.”

In fact, the previous presidential administration made strides in the area of addressing the problem as far back as 2003, Corrigan wrote.


“Advocacy and government groups have strongly endorsed resolving the stigma of mental illness as a way to improve service use. The report of President Bush’s New Freedom Commission highlighted anti-stigma programs as a primary goal to improve the mental health system. A better understanding of the problem of stigma is needed to inform the development of these anti-stigma programs…

Psychologists who are able to embrace this research agenda will help advocates to better tackle the stigma problem and will significantly advance treatment use in turn.”

(“How Stigma Interferes with Mental Health Care.” October 2004, The American Psychologist. The American Psychological Association.)

It’s easier said than done, it seems. While there have been extensive discussions, and scholarly dissertations on the effects of stigmatization and marginalization of those suffering from mental illness, no one seems to have a societal cure for the underlying answer to the problem.

At the 2013 TEDxMet conference (TED.com), writer Andrew Solomon presented a moving talk on his own personal battle with depression and underscores the simple truth about the stigma of mental illness — talking about it can bring about understanding and acceptance, leading to help and treatment.

“People still think that it’s shameful if they have a mental illness,” Solomon told the TEDxMet conference. “They think it shows personal weakness. They think it shows a failing. If it’s their children who have mental illness, they think it reflects their failure as parents.”

It’s not always easy to coax someone with highly personal – and let’s face it, often painful – experiences with mental issues to speak about them openly. But, those who’ve spoken cogently on the subject, as Solomon did at the 2013 TEDxMet conference, believe the dialogue has to begin somewhere for it to be effective.


“The most moving letter I ever received in a way was one that was only a sentence long, and it came from someone who didn’t sign his name. He just wrote me a postcard and said, ‘I was going to kill myself, but I read your book and changed my mind.’ And really, I thought, okay, if nobody else ever reads anything I’ve written, I’ve done some good in the world. It’s very important just to keep writing about these things, because I think there’s a trickle-down effect, and that the vocabulary that goes into serious books actually makes its way into the common experience — at least a little bit of it does — and makes it easier to talk about all of these things.”

In Canada, this month, six-time Olympic medalist in cycling and speed skating Clara Hughes, is pedaling a bicycle across the broad expanse of the country to do just that – open the dialogue.
“Clara’s Big Ride” is rolling across Canada to promote her message of “working together to create a stigma-free Canada.”

Hughes herself battled depression before becoming an Olympic-caliber athlete and said she has been fortunate in her life to have support where others do not.

“I actually had the help, I had the support — I didn’t lose my job, I didn’t lose my spot in my sport on my national team,” she said in an address this week to a mental health fundraising dinner in Halifax, Nova Scotia.

“Everybody around me rallied to bring me back, to make me stronger (and) to have me win again for my country. I don’t think that’s the case for the woman that works at the hospital, or the teacher at the school or the mother who’s at home alone with postpartum depression,” said Hughes. “I know it’s not the case, because people tell me their stories.”

Personal stories. Dialogue. Discussion.
It may not be the stuff that moves governments to act, but it is the only universally accepted means by which to correct the demonization, the stigmatization of those with mental health challenges.
Seems simple, doesn’t it? Such a simple thing as talking about it, but as the experts point out, it all starts at home, in our own neighborhoods, in our own places of work and in our own families.

Hey, it’s a start.

Dementia Signage for the Home

 

Friday, April 25, 2014

Looking After Mom and Dad: Every Child’s Future

 

aging parents 1


We’re not getting any younger.

And neither are our parents. It’s a fact we’re living longer but, with the dismal state of personal finances for an increasing number of North Americans, as the number of people who are living well into their 80s and 90s increases, the number who are doing so in poverty or who are threatening to impoverish their children who are forced to look after them is increasing exponentially.

It’s estimated 44 million adult Americans are helping to provide care for their aging parents. The stress and sleepless nights that come with such a task is mounting and no one seems to have an easy answer for the dilemma.

Our parents looked after us, fed and clothed us for our first 18 to 20-something years of life. If mom and dad expended an inordinate amount of personal resources in looking after us, to set us on our way, and to make their own way in life with minimal planning — a scenario that is troublingly the norm, as opposed to the exception — they and we are often faced with the terrifying challenge of how to best look after our aging parents.


According to WebMD (www.webmd.com) the issue is one that a surprising number of Baby Boomers are either already looking after at least one parent or fretting over that scenario.

“Some 41 percent of baby boomers with a living parent are helping to care for them, according to a recent USA Today/ABC News/Gallup Poll, and nearly half of those who aren’t worry about being able to do so in the future. The price tag isn’t cheap: MetLife says the average price for in-home non-medical help runs about $20 an hour, an assisted-living residence costs roughly $36,000 a year, and a private room in a nursing home goes for over $77,000 annually.”

Money aside, just getting to the point of planning for our parents’ ‘golden years’ with them can be daunting.

One of the most crucial steps is “having the talk” with mom and dad about whether they have any plans, how extensive those plans might be and how the whole family can come to a rationed, planned transition into care – whether it be in their own homes, in your home, or in an elder care facility.
“Use your own experience to get the conversation going,” said Virginia Morris, author of How to Care for Aging Parents, in an interview with WebMD. “Say, ‘I’m starting to do my own estate planning, and I wonder what you had drawn up.’” Or print out the entire WebMD article to show them and say, “This article says we should talk about where you keep your papers.”

Something as simple as understanding where estate planning papers, wills and the like can be crucial.
Experts suggest family members tackle the “tricky financial questions as well.” Find out if they have long-term care insurance, and if not, how they plan on paying for nursing home care or in-home help if necessary. Again, tell your parents you’re thinking about doing estate planning and wondered what financial choices they made. “Make it about you, rather than them,” says Hugh Delehanty, editor in chief of AARP Publications — your parents are less likely to get defensive.


When it comes to the health implications of looking after aging parents, the Mayo Clinic has tips:
As your parents get older, how can you be sure they’re successfully taking care of themselves and staying healthy? When you visit your aging parents, ask yourself the following questions. Then, if necessary, take steps to help your aging parents maintain their independence.

1. Are your aging parents taking care of themselves?Pay attention to your parents’ appearance. Are their clothes clean? Do they appear to be taking good care of themselves? Failure to keep up with daily routines — such as bathing, tooth brushing and other basic grooming — could indicate dementia, depression or physical impairments.

Also pay attention to your parents’ home. Are the lights working? Is the heat on? Are the bathrooms clean? Is the yard overgrown? Any big changes in the way your parents do things around the house could provide clues to their health. For example, scorched pots could mean your parents are forgetting about food cooking on the stove. Neglected housework could be a sign of depression, dementia or other concerns.

2. Are your aging parents experiencing memory loss?

Everyone forgets things from time to time. Modest memory problems are a fairly common part of aging, and sometimes medication side effects or underlying conditions contribute to memory loss. There’s a difference, though, between normal changes in memory and the type of memory loss associated with Alzheimer’s disease and other types of dementia. If you’re concerned about memory loss for either of your aging parents, schedule an evaluation with the doctor.

3. Are your aging parents safe in their home?

Take a look around your parents’ home, keeping an eye out for any red flags. Do your parents have difficulty navigating a narrow stairway? Has either parent fallen recently? Are they able to read directions on medication containers? Bathrooms can be a minefield of hazards. A simple bathtub can be a place where parents can do serious physical harm if there are no aids to help them use the tub or shower.

4. Are your aging parents safe on the road?

Driving can sometimes be challenging for older adults. If your aging parents become confused while driving or you’re concerned about their ability to drive safely, it might be time to stop driving. To help your aging parents maintain their independence, suggest other transportation options — such as taking the bus, using a van service, hiring a driver or taking advantage of other local transportation options.

5. Have your aging parents lost weight?

Losing weight without trying could be a sign that something’s wrong. For aging parents, weight loss could be related to many factors, including:
  • Difficulty cooking. Your parents could be having difficulty finding the energy to cook, grasping the tools necessary to cook, or reading labels or directions on food products.
  • Loss of taste or smell. Your parents might not be interested in eating if food doesn’t taste or smell as good as it used to.
  • Underlying conditions. Sometimes weight loss indicates a serious underlying condition, such as malnutrition, dementia, depression or cancer.
If you’re concerned about unexplained weight loss for either of your aging parents, schedule an evaluation with the doctor.

6. Are your aging parents in good spirits?

Note your parents’ moods and ask how they’re feeling. A drastically different mood or outlook could be a sign of depression or other health concerns. Also talk to your parents about their activities. Are they connecting with friends? Have they maintained interest in hobbies and other daily activities? Are they involved in organizations or clubs?

If you’re concerned about your parents’ moods, schedule an evaluation. Depression can be treated at any age.

7. Are your aging parents able to get around?

Pay attention to how your parents are walking. Are they reluctant or unable to walk usual distances? Is knee or hip arthritis making it difficult to get around the house? Would either parent benefit from a cane or walker? Issues such as muscle weakness and joint pain can make it difficult to move around as well. If your parents are unsteady on their feet, they might be at risk of falling — a major cause of disability among older adults.

The Mayo Clinic has many more detailed suggestions on how to begin the dialogue, how to assess the physical and mental state of your parents and how to reach out for help.

Simple consultations with your parents’ doctors, a trusted family lawyer and even clergy can offer support and starting points.

They’re our parents, for heaven’s sake, they deserve to live out their lives without having to submit to the humiliation of being wards of the state in a government-supported seniors facility.
We owe it to them and our own peace of mind to make sure there is a solid game plan for the latter years of mom and dad’s life.


“To care for those who once cared for us is one of the highest honors.”
—Tia Walker, The Inspired Caregiver: Finding Joy While Caring for Those You Love
 
 


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Wednesday, April 16, 2014

Fellowship T-shirts


Fellowship T-shirts at Dementia Signage for the Home Gift Shop

 

An Army of One: Life As A Caregiver

 

An Army of One


Look around. Whom do you see?
Women, men, teens, grandparents, spouses, sisters, brothers, friends, significant others. Nurses, home-health aides, doctors, Visiting Angels, hospice care workers, social workers. Priests, nuns, ministers of every denomination. People of all races and ethnic origins. All across the world, in every country, we are there. We are the caregivers.

Yet we are alone.
Every story is different. Every caregiver fails in his or her own way. The guilt eats at us. The lack of sleep drains us. The accusations of neglect and abuse by loved ones suffering from dementia or brain injury haunt us day and night. We feed and clothe and them. We bathe them. We cry for them and with them. We love them. And some days we don't like them. We go to battle for them and we beg for some time away. We are part of you and we are alone.

My husband and I planned for the time when one or more of our parents would need care. We would bring them into our home and provide a safe, loving place for them as long as it was needed. It would be hard, but hard is what life is sometimes.

Living with and caring for my father-in-law, Rodger, was far more difficult than I ever imagined. I never suspected his quirky behavior was due to schizophrenia, first diagnosed in his early twenties. A diagnosis long hidden from members of the family, including my husband and me. Not only had the disease affected his life, but so had the years of powerful drugs that enabled him to function. His memory and ability to reason were vastly diminished. Suspicion and paranoia made it impossible for him to trust me while I, innocent that I was, trusted him when he said he took his medication.

Although he lived for five years after his last psychotic break, he never really recovered from it and the near fatal bout of pneumonia that he came down with while in the hospital.After that came the heart attack, followed by surgery to implant a pacemaker. The pacemaker led to blood clots forming in his arm. Blood thinners requiring regular blood tests caused him great anxiety.

"What is the government doing with my blood? Why do they need so much?" he'd ask.

My suspicion that he was developing Parkinson's disease was deemed incorrect, until months later, when it could no longer be denied. The disease ran in his family and his sister had recently died from it.

He needed a walker and could no longer use the stairs. Severe swallowing problems meant pureed food and thickened liquids made up his diet. I learned to cook food that tasted good and offered as much nutrition as possible, but even I had to admit that the meals looked awful. Dementia came next, bringing the phenomenon of sundowning along with it. No one slept much, once that started.
When people learned I was a caregiver they would say they understood. Some may have, on some level. But, I knew deep in my heart that they could not really know how it was.

How could they?

His life was his own. His back story defined who he became. His history of illnesses was as convoluted and complicated as his mind. He needed so much. What he got was one woman, part of a vast army of caregivers who tend their loved ones alone.

Who are the informal caregivers?
Although there may appear to be wide discrepancies in estimates of the number of informal caregivers in the U.S., the figures cited below reflect variations in the definitions and criteria used in each study (e.g. age of care recipients surveyed or relationship of caregiver to care recipient).
  • 65.7 million caregivers make up 29 percent of the U.S. adult population providing care to someone who is ill, disabled or aged. [The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.] - Updated: November 2012
  • 52 million caregivers provide care to adults (aged 18+) with a disability or illness. [Coughlin, J., (2010). "Estimating the Impact of Caregiving and Employment on Well-Being: Outcomes & Insights in Health Management," Vol. 2; Issue 1] - Updated: November 2012
  • 43.5 million of adult family caregivers care for someone 50+ years of age and 14.9 million care for someone who has Alzheimer's disease or other dementia. [Alzheimer's Association, "2011 Alzheimer's Disease Facts and Figures, Alzheimer's and Dementia," Vol.7, Issue 2.] - Updated: November 2012
  • LGBT respondents are slightly more likely to have provided care to an adult friend or relative in the past six months: 21 percent versus 17 percent. ["MetLife: Still Out, Still Aging 2010. Study of Lesbian, Gay, Bisexual, and Transgender Baby Boomers"] - Updated: November 2012

Dementia Signage for the Home

 
 

Friday, April 11, 2014

Help Washington, DC hear the voices of people living with dementia

Dementia: Be Heard in Washington DC


Institute for Person-Centered Care
 
Help Washington, DC hear the voices of people living with dementia
CCAL-Advancing Person-Centered Living is working with the University of Buffalo-Institute for Person-Centered Care on a research project funded by the Retirement Research Foundation. One of the aims of the study is to gather feedback from a geographically diverse group of people about what they feel is important and/or needed concerning dementia care in America.
 
The aim of the survey is to develop agreement on priorities for dementia care, research, education, and funding from the perspectives of people living with dementia, family care partners, and advocates for people with dementia. As someone with knowledge about dementia, we invite you to take part in this study. It is easy to participate and will not involve much of your time.
 
There will be at least one more round of the survey as we build agreement. We hope that you will participate in the multiple rounds. We will ask you for your email at the end of the survey so we can send the next survey to you. Your responses and any other information you provide will not be linked to your email. The research has been approved by the Internal Review Board at the University of Buffalo.
 
A written survey and a pre-addressed, postage-paid envelop can be mailed to you if you would prefer this method instead of completing the survey online. Please call the number below and leave your name and address.
 
We will combine the views of everyone who takes part in the survey. We will use the information to help inform federal policymakers about what people feel is important and needed concerning dementia care to better inform and shape their priorities.
 
Your response by April 25, 2014 would be appreciated.
 
To request a paper version contact:

Dr. Davina Porock
Director, UB Institute for Person-Centered Care
(716) 829 2260
Or email ipcc@buffalo.edu
Thank you for helping us make your voice be heard!
 
Karen Love, Founder, CCAL-Advancing Person-Centered Living
Davina Porock, PhD, Director UB Institute for Person-Centered Care
 
______________________________
 
TCV Editor: CCAL stands for Consumer Consortium on Assisted Living