Are there born caregivers do you think? There are people who seem to just come forth to help, to care when they see the need. Most mothers are like this, never ceasing being a mother to her children even if they are 40 or 50 years old!
I won't be posting for a week, for example because I'll be in Michigan with my 44 year old son having surgery to repair damage to his neck during a rollover accident last June. Does he need me there? I'm not sure, but I know I need to be there to support, comfort and be a present familiar face.
I honor Alzheimer caregivers who did not volunteer for the job of caring, but found themselves elected either by the majority (usually siblings) or by default. Most seem to be willing to learn how to care well and listen to the instruction a coach gives them. That is why I wrote my book Matters of the Mind...and the Heart and why I continue to do this work. I've got 5 empathic knowledgable women who continue to help caregivers understand and manage this disease. I see that they are natural caregivers for their own family as well. I guess there are born caregivers. Thank God for them.
I'll be writing again after February 4th. Until then care well.
Wednesday, January 26, 2011
Friday, January 14, 2011
More about presenteeism
I can't believe I haven't written in 14 days! Amazing what a few days of snow will do to slow a person...and a business down. We had to postpone a training, and it took an hour and a half to make a 45 minute trip to McLean Hospital to present the research on caregiver education and support to the team on the geriatric unit. It was worth the trip as the team was encouraged by coach Penny and my stories of successful teaching of Alzheimer caregivers. Both Mittelman and Tremont studies show that coaching the caregiver(s)in workable approaches to care delayed long term placement up to 1 1/2 years! That is a savings for the government and helps maintain the comfort of home and family for the person with dementia.
As a company we hope to show research (there is plenty) to large companies with Employee Assistance Programs that offering employees who are caregivers support can benefit the company financially. Research states that when supported and educated about resources, employees are able to improve work productivity by a large margin. When an employee is a caregiver his mind and heart are often not present at the job. We call this presenteeism; the body is there but the spirit is preoccupied with that someone at home who is not able to care for themselves adequately. Leaving early or coming in late as well as making numerous check in phone calls reduces the number of hours the employee is giving to the company. When caregivers who are employed utilize geriatric care managers, one study said, they were more relaxed at work, free from worry, and could give more to the job. Coaches can offer the education needed to 'get mom to the day program' or work with the in home help in a more effective way.
If people know of anyone in a large company like Raytheon, Staples, Fidelity, John Hancock Insurance or the like, let me know. They need to solve the presenteeism problem.
As a company we hope to show research (there is plenty) to large companies with Employee Assistance Programs that offering employees who are caregivers support can benefit the company financially. Research states that when supported and educated about resources, employees are able to improve work productivity by a large margin. When an employee is a caregiver his mind and heart are often not present at the job. We call this presenteeism; the body is there but the spirit is preoccupied with that someone at home who is not able to care for themselves adequately. Leaving early or coming in late as well as making numerous check in phone calls reduces the number of hours the employee is giving to the company. When caregivers who are employed utilize geriatric care managers, one study said, they were more relaxed at work, free from worry, and could give more to the job. Coaches can offer the education needed to 'get mom to the day program' or work with the in home help in a more effective way.
If people know of anyone in a large company like Raytheon, Staples, Fidelity, John Hancock Insurance or the like, let me know. They need to solve the presenteeism problem.
Saturday, January 1, 2011
New Year 2011
I am not a New Year resolution type at all. However, I'm recommending you all make this a year of educating yourselves about Alzheimer care. I am going to continue in my search for the best information to train caregivers with. New trends, new learnings are on the rise, making care for the person STILL HERE to thrive. Many persons with Alzheimer's rate their quality of life much higher than their caregivers give for a rating. That's because the caregiver is blindsided by the losses and personalizes it. 'What would I feel if I couldn't do that any longer?' they ask themselves. The person with Alzheimer's may not even be aware of much of his losses. I think the best thing they do is live in the present, so if the caregiver can learn how to make each 'present'meaningful and anxiety free, the person is happier. So will you be. So Happy New Year to learning! I'll share some of my learnings with you blogspot.com readers. Thanks for coming onboard!
Wednesday, December 29, 2010
Alzheimer's speaks out; Listen Please!
A tremendous meeting of people with Alzheimer’s energizes efforts to better their world.
A remarkable conference of people experiencing Alzheimer’s energized efforts to improve their lives. Organized by Jay Smith and Richard Bozanich, two driven men in the early stages of Alzheimer’s, the October 27 event packed Los Angeles’ Skirball Cultural Center. Even the week-long drama of massive L.A. fires which caused the evacuation of over a million people did nothing to deter participants, and many were turned away because the seats sold out.
The Alzheimer’s Association was the conference’s backer, and Peter Braun, its Chapter President, opened by stating, “This is the largest gathering of people with dementia in our country.” He was followed by Smith and Bozanich, who drew a standing ovation as they called on Americans to hear the voice of early-stage Alzheimer’s.
They were followed by speakers calling for practical and immediate improvements to the current state of affairs: doctors to become better skilled at diagnosis, therapists to be better educated in ways to help them live well, and society at large to be better informed on how to relate to and be supportive of them. The conference received a lot of publicity. PBS and HBO crews were on-site, and the Alzheimer’s Association will be turning footage into a presentation they plan to take on the road nationwide.
All this publicity will get some very important messages out to the world. Here are a few.
The Message to Doctors: Get the Best Diagnostic Training
Clinical diagnosis in the early stages of Alzheimer’s requires experience and skill. No doctor wants to risk misdiagnosing ordinary aging, unrelated illnesses, or medicinal side-effects as Alzheimer’s. The result is intense caution by doctors about offering a diagnosis. When someone notices a symptom that might indicate Alzheimer’s, it could be a long road until the doctor makes a clear diagnosis.
Yet an early and accurate diagnosis means so much to people. People shared their journeys with this reality. (Paraphrased)
•“I was aware I was slipping at work. I could not contribute ideas at meetings anymore. I went into my office and just stood there, not knowing where to start, even though I knew there was a lot to do. I thought it was stress, so shifted to a simpler position but could not learn its tasks. I felt scared. One day I called in sick and never went back. From there it was a long and bumpy road to diagnosis.”
•“I had eight diagnoses in 18 months. Time after time, doctors said ‘It could be…,’ ‘It could develop into…,’ ‘You have a risk for…’ It was very difficult to live with this vague information.”
•“As long as I had a diagnosis of mild cognitive impairment, my doctor did not give me medications. I needed to be diagnosed with AD to get them.”
•“Compensating for my subtle impairments fatigued me so much, I ended up spending two days in bed after what used to be routine business trips. I had to retire and start a long search for diagnosis.”
These calls for doctors to be better educated in the latest diagnostic techniques and tools were significant moments. A formerly vague complaint has now crystallized into a firm voice.
The Message to Everyone with Alzheimer's: Choose to Live Life
Immense victories in the Alzheimer’s fight were brightly seen in stories people told about their lives after diagnosis.
•“I accepted it right away. I reassessed my life and priorities, began to plan and accommodate, and made some commitments about judgment.”
•“At first I was in a dark phase. Then advocacy became important. I met people in a similar situation who have become a family of sorts. I will not lead a stigmatized life.”
•“I joined a memory club, participate in research studies, took up ceramics, and put in a 600-gallon pond in our backyard. I take care of my mother, who has AD and lives with us. I try to focus on the positive and the beauty of each day.”
•“We moved into a smaller house. We simplified our life. I gave up handling our finances. I try to adopt routines of exercise and healthy living, and I found an unexpected spiritual gift in recognizing where I am in life and living fully what I have left.”
These are very different voices than those described from the past. In an interview, Bozanich noted, "My mom's uncle Irwin got this, and we never saw him again. I didn't want the same thing to happen to me, to be sequestered away like people are ashamed of me. I didn't want to go quietly." This conference was an affirmation that things are different today. The message: People with Alzheimer’s can do so much, both spiritually and physically. They are very alive and can make great choices about how to live. Says Smith, “There’s still a lot of good living to do.”
The Message to Family and Friends: Relating Right Requires a Little Learning
No less important were the simple tips of social queues to the broad circle of people close to those who have Alzheimer's.
•“People with early-stage dementia resent the term ‘caregiver’. We prefer ‘care partner’ because, for the most part, we can still take care of ourselves very well, thank you.”
•“Be patient. It makes a world of difference.”
•“Accept it. We go through a tunnel of denial at first. When we come out the other end and have found acceptance, accept along with us. Don’t make us insist and explain that we do have a problem.”
The reach of these messages promises to be truly great, what with so much media attending the conference, and the Alzheimer's Association videoing it for display across the country, .
Elyse Salend, a specialist on aging who works for the grant-giving Archstone Foundation, said, "I felt awed by them, by their courage. They're not hiding out. They're trying to make the world better for all of us."
Mr. Bozanich is leaving the success of this conference with a crystal clear mission. "As long as I'm able to talk about it," he said, "it's important to speak out about what it's like to live with this."
A remarkable conference of people experiencing Alzheimer’s energized efforts to improve their lives. Organized by Jay Smith and Richard Bozanich, two driven men in the early stages of Alzheimer’s, the October 27 event packed Los Angeles’ Skirball Cultural Center. Even the week-long drama of massive L.A. fires which caused the evacuation of over a million people did nothing to deter participants, and many were turned away because the seats sold out.
The Alzheimer’s Association was the conference’s backer, and Peter Braun, its Chapter President, opened by stating, “This is the largest gathering of people with dementia in our country.” He was followed by Smith and Bozanich, who drew a standing ovation as they called on Americans to hear the voice of early-stage Alzheimer’s.
They were followed by speakers calling for practical and immediate improvements to the current state of affairs: doctors to become better skilled at diagnosis, therapists to be better educated in ways to help them live well, and society at large to be better informed on how to relate to and be supportive of them. The conference received a lot of publicity. PBS and HBO crews were on-site, and the Alzheimer’s Association will be turning footage into a presentation they plan to take on the road nationwide.
All this publicity will get some very important messages out to the world. Here are a few.
The Message to Doctors: Get the Best Diagnostic Training
Clinical diagnosis in the early stages of Alzheimer’s requires experience and skill. No doctor wants to risk misdiagnosing ordinary aging, unrelated illnesses, or medicinal side-effects as Alzheimer’s. The result is intense caution by doctors about offering a diagnosis. When someone notices a symptom that might indicate Alzheimer’s, it could be a long road until the doctor makes a clear diagnosis.
Yet an early and accurate diagnosis means so much to people. People shared their journeys with this reality. (Paraphrased)
•“I was aware I was slipping at work. I could not contribute ideas at meetings anymore. I went into my office and just stood there, not knowing where to start, even though I knew there was a lot to do. I thought it was stress, so shifted to a simpler position but could not learn its tasks. I felt scared. One day I called in sick and never went back. From there it was a long and bumpy road to diagnosis.”
•“I had eight diagnoses in 18 months. Time after time, doctors said ‘It could be…,’ ‘It could develop into…,’ ‘You have a risk for…’ It was very difficult to live with this vague information.”
•“As long as I had a diagnosis of mild cognitive impairment, my doctor did not give me medications. I needed to be diagnosed with AD to get them.”
•“Compensating for my subtle impairments fatigued me so much, I ended up spending two days in bed after what used to be routine business trips. I had to retire and start a long search for diagnosis.”
These calls for doctors to be better educated in the latest diagnostic techniques and tools were significant moments. A formerly vague complaint has now crystallized into a firm voice.
The Message to Everyone with Alzheimer's: Choose to Live Life
Immense victories in the Alzheimer’s fight were brightly seen in stories people told about their lives after diagnosis.
•“I accepted it right away. I reassessed my life and priorities, began to plan and accommodate, and made some commitments about judgment.”
•“At first I was in a dark phase. Then advocacy became important. I met people in a similar situation who have become a family of sorts. I will not lead a stigmatized life.”
•“I joined a memory club, participate in research studies, took up ceramics, and put in a 600-gallon pond in our backyard. I take care of my mother, who has AD and lives with us. I try to focus on the positive and the beauty of each day.”
•“We moved into a smaller house. We simplified our life. I gave up handling our finances. I try to adopt routines of exercise and healthy living, and I found an unexpected spiritual gift in recognizing where I am in life and living fully what I have left.”
These are very different voices than those described from the past. In an interview, Bozanich noted, "My mom's uncle Irwin got this, and we never saw him again. I didn't want the same thing to happen to me, to be sequestered away like people are ashamed of me. I didn't want to go quietly." This conference was an affirmation that things are different today. The message: People with Alzheimer’s can do so much, both spiritually and physically. They are very alive and can make great choices about how to live. Says Smith, “There’s still a lot of good living to do.”
The Message to Family and Friends: Relating Right Requires a Little Learning
No less important were the simple tips of social queues to the broad circle of people close to those who have Alzheimer's.
•“People with early-stage dementia resent the term ‘caregiver’. We prefer ‘care partner’ because, for the most part, we can still take care of ourselves very well, thank you.”
•“Be patient. It makes a world of difference.”
•“Accept it. We go through a tunnel of denial at first. When we come out the other end and have found acceptance, accept along with us. Don’t make us insist and explain that we do have a problem.”
The reach of these messages promises to be truly great, what with so much media attending the conference, and the Alzheimer's Association videoing it for display across the country, .
Elyse Salend, a specialist on aging who works for the grant-giving Archstone Foundation, said, "I felt awed by them, by their courage. They're not hiding out. They're trying to make the world better for all of us."
Mr. Bozanich is leaving the success of this conference with a crystal clear mission. "As long as I'm able to talk about it," he said, "it's important to speak out about what it's like to live with this."
How to talk to your family member with Alzheimer's
Reading this article from Dementia Weekly, I am reminded that communication is EVERYTHING in Alzheimer care. Relating well to the person in a calm reassuring way can allay fears. So much of everyday life becomes confusing for them; they need us to tell them simply what is happening, what is expected now (not later, always stay in the present) and that you will keep them safe. Invite them to come with you; don't order them to come. "We're having dinner now. I'd like you to join us. Please come with me." There will be less resistance to care as the article below suggests.
Chicago - Adults with Alzheimer's in nursing homes who are talked to like children are more resistant to care, according to new research reported today at the 2008 Alzheimer's Association International Conference on Alzheimer's Disease (ICAD 2008) in Chicago.
As effective pharmaceutical treatments and prevention for Alzheimer's remain elusive, some researchers are focusing their efforts on improving quality of life and care including communication. One study determined that there is a correlation between how nursing home staff communicates with residents who have dementia and the residents' subsequent resistance to care. Another investigated how families work to maintain normalcy and coherence during dinner time conversation when a family member with Alzheimer's is included.
"The style of communication that we use with people with Alzheimer's influences how they feel about themselves and how well they respond to those providing care," said Sam Fazio, PhD, Director, Medical and Scientific Relations at the Alzheimer's Association. "With the growing prevalence of Alzheimer's, it will be increasingly important for healthcare providers, caregivers and families to understand the effect Alzheimer's has on communication and, perhaps more importantly, the impact their communication may have on the individual's quality of life."
Chicago - Adults with Alzheimer's in nursing homes who are talked to like children are more resistant to care, according to new research reported today at the 2008 Alzheimer's Association International Conference on Alzheimer's Disease (ICAD 2008) in Chicago.
As effective pharmaceutical treatments and prevention for Alzheimer's remain elusive, some researchers are focusing their efforts on improving quality of life and care including communication. One study determined that there is a correlation between how nursing home staff communicates with residents who have dementia and the residents' subsequent resistance to care. Another investigated how families work to maintain normalcy and coherence during dinner time conversation when a family member with Alzheimer's is included.
"The style of communication that we use with people with Alzheimer's influences how they feel about themselves and how well they respond to those providing care," said Sam Fazio, PhD, Director, Medical and Scientific Relations at the Alzheimer's Association. "With the growing prevalence of Alzheimer's, it will be increasingly important for healthcare providers, caregivers and families to understand the effect Alzheimer's has on communication and, perhaps more importantly, the impact their communication may have on the individual's quality of life."
Monday, December 27, 2010
January's column
It is still blowing snow here in Boston and I've got to get to work on my column for January 2011. I'm calling it New Beginnings. I'll expand on the idea of looking at Alzheimer's progression as new beginnings rather than losses. We all experience losing abilities or opportunities throughout life; why look at the ones of Alzheimer's as catastrophic? Life is a learning experience; so is Alzheimer's. Noting changes in a family member should trigger the need to learn something new to help that person remain in charge of their life. I've met families who meet each new 'beginning' with courage and determination to normalize their family life to the extent possible. Although this disease is wrought with emotion, caregivers can turn it into a life journey. Life is full of hope and humor, which Bob Stern MD at BUAD Research Center says caregivers need (both) to thrive through Alzheimer's. People have accused me of being too positive about this caregiving thing. One blog reader was angry with me for this. Well, so be it. I found in being a caregiver for both my inlaws that I developed a heart for caregiving them. Finding humor in the often ridiculous happenings in a day of caregiving is essential. Try it.
Rosemary for Alzheimer's
This is an article from Dementia & Alzheimer Weekly, a great resource of information.
"Rosemary contains more than a dozen antioxidants and a half-dozen compounds reported to prevent the breakdown of acetylcholine. It's fabulous that the classical herb of remembrance has so many compounds that might help people suffering from Alzheimer’s."
These are the words of Dr. James Duke, former U.S. Department of Agriculture (USDA) Chief of Medicinal Plant Research. Dr. Duke is one of the world's leading authorities on medicinal plants. He helped build the USDA database that demonstrates how rosemary may slow the progress of Alzheimer's.
His strong advocacy of rosemary has to do with a chemical called acetylcholine. Anyone who has lived with Alzheimer’s in the past decade has heard of Aricept. Aricept is a medicine that does one thing: it inhibits acetylcholine.
So does rosemary.
Dr. Duke said that when he learned of the new medications that fought Alzheimer’s by inhibiting acetylcholine, “I probed my U.S. Department of Agriculture (USDA) database for herbs with phytochemical constituents that were also reported to prevent the breakdown of ACh (acetylcholine). Even though I myself had been the source of the overwhelming proportion of the data in the database for more than a decade, I was surprised at the output. The database yielded about a half dozen anti-AChE (acetylcholine) compounds, with Rosmarinus officinalis (rosemary) the proud winner in terms of their numbers and potencies.”
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