I've been reading a book about a couple's journey through alzheimer's disease called 10 Thousand Joys, 10 Thousand Sorrows. It is an unusual book as the person, the husband, with Alzheimer's has always been a lover of language. Poetry and prose had been his life along with his wife's as well. They taught, wrote and enjoyed the nuiances of language. As his disease progresses in the story he is able to express his feelings about his confusion, his aphasia, his disorientation and his angst about losing language.
This is unusual because most who get Alzheimer's are not linguists or poets . They can't express these feelings easily if at all. Do they suffer alone? What can we as caregivers do to help? Reading the book gave me insight into what it might be like to know you are losing your cognitive abilities. It gave me more empathy towards those who cannot express their feelings. As caregivers we need to be sensitive to the struggles to understand that the person with the disease must have. One patient said, "I go to talk and words run away and hide." As I read this book I became anxious and sometimes felt jealous anger about his being able to express his confusion,fear and frustration. I remembered all the spouses who try to understand but can't what their partner is experiencing.Oh that all could do that; caregiving might take on a more shared experience. As it is, most caregivers complain of missing conversation, companionship of their loved one. Caregiving is a lonely existence. We need to slow our pace to match theirs, try to 'read' expressions on the face, and perhaps guess what the person is feeling. This is hard work. We need to reach out to the person, not get stuck in the label Alzheimer's. Maybe we'd have more of a chance to have that shared journey and not be so lonely.
Sunday, October 17, 2010
Tuesday, October 5, 2010
White Matter Matters a Lot
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White Matter Matters A Lot
When it comes to your brain, you probably have read all about the brain's "gray matter." Gray matter, so called because of its distinctive color, is composed of cell bodies of nerve cells and is responsible for memory storage. "White matter" also is in the brain and consists of millions of long filaments (axons) coated with a fatty white substance called myelin that extend from the cell bodies. This white matter fills half of the brain and helps transmit electrical signals that carry the important messages between neurons from one brain region to the other.
White matter has long been a mystery to neuroscientists as well as to the surgeons who operated on the brain. The main thought was that myelin -- which looks like an outstretched, elongated finger when viewed under a microscope -- was simply insulation and that the filaments inside were passive passageways. Only in the past decade have researchers begun to better understand the critical role of white matter in helping a person master a variety of mental skills.
Johns Hopkins scientists have discovered to their surprise that nerves in the mammalian brain's white matter do more than just ferry information between different brain regions. In fact, they process information the way gray matter cells do, and assist brain regions to work well together. The discovery in mouse cells, reported in a cover story in the journal Nature Neuroscience, shows that brain cells "talk" with each other in more ways than previously thought.
Researchers in Europe have also noted that the maturing of the brain from childhood to adulthood, and experience at an early age (learning a foreign language, how to play a sport, ride a bike, play an instrument) influences the formation of myelin, strengthens neuronal connections, speeds the learning process, and improves cognition. Damage to the myelin, on the other hand, can impair mental abilities.
Damage to the brain's white matter has also been found to be an indicator of potential memory problems and dementia. Dutch researcher Niels Prins, M.D., has discovered that elderly people with damage to the small blood vessels in the brain have a greater chance of developing dementia or depression.
Elderly people with serious white matter abnormalities and infarcts taking part in Dr. Prins's study were found to deteriorate more quickly in their cognitive functioning than peers with fewer abnormalities. In particular, the processing of information was worse in the group with more white matter lesions and infarcts. This group also had an increased risk of developing dementia and depression.
Over a period of three years, one-third of the elderly people he investigated exhibited an increase in white matter lesions. These individuals had an increased likelihood of experiencing a stroke and a faster decline in their cognitive functioning. Furthermore, a significant increase in the number of abnormalities in the white matter increased the risk of dementia and depression.
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White Matter Matters A Lot
When it comes to your brain, you probably have read all about the brain's "gray matter." Gray matter, so called because of its distinctive color, is composed of cell bodies of nerve cells and is responsible for memory storage. "White matter" also is in the brain and consists of millions of long filaments (axons) coated with a fatty white substance called myelin that extend from the cell bodies. This white matter fills half of the brain and helps transmit electrical signals that carry the important messages between neurons from one brain region to the other.
White matter has long been a mystery to neuroscientists as well as to the surgeons who operated on the brain. The main thought was that myelin -- which looks like an outstretched, elongated finger when viewed under a microscope -- was simply insulation and that the filaments inside were passive passageways. Only in the past decade have researchers begun to better understand the critical role of white matter in helping a person master a variety of mental skills.
Johns Hopkins scientists have discovered to their surprise that nerves in the mammalian brain's white matter do more than just ferry information between different brain regions. In fact, they process information the way gray matter cells do, and assist brain regions to work well together. The discovery in mouse cells, reported in a cover story in the journal Nature Neuroscience, shows that brain cells "talk" with each other in more ways than previously thought.
Researchers in Europe have also noted that the maturing of the brain from childhood to adulthood, and experience at an early age (learning a foreign language, how to play a sport, ride a bike, play an instrument) influences the formation of myelin, strengthens neuronal connections, speeds the learning process, and improves cognition. Damage to the myelin, on the other hand, can impair mental abilities.
Damage to the brain's white matter has also been found to be an indicator of potential memory problems and dementia. Dutch researcher Niels Prins, M.D., has discovered that elderly people with damage to the small blood vessels in the brain have a greater chance of developing dementia or depression.
Elderly people with serious white matter abnormalities and infarcts taking part in Dr. Prins's study were found to deteriorate more quickly in their cognitive functioning than peers with fewer abnormalities. In particular, the processing of information was worse in the group with more white matter lesions and infarcts. This group also had an increased risk of developing dementia and depression.
Over a period of three years, one-third of the elderly people he investigated exhibited an increase in white matter lesions. These individuals had an increased likelihood of experiencing a stroke and a faster decline in their cognitive functioning. Furthermore, a significant increase in the number of abnormalities in the white matter increased the risk of dementia and depression.
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Tuesday, September 28, 2010
Educate yourself
Early Detection and Management of Dementia Cuts Healthcare Costs
With the aging of America, the number of Alzheimer’s cases is growing rapidly.
Early detection, diagnosis and care management for people newly diagnosed with cognitive impairment and dementia reduces outpatient costs by almost 30 percent, according to new research reported at the recent Alzheimer's Association International Conference on Alzheimer's Disease 2010.
According to the Alzheimer's Association, dementia is a common, costly, and often unrecognized problem in older adults. In order to provide better medical care and outcomes for people with Alzheimer's and other dementias, the conditions must first be detected and diagnosed, and needed care management must be provided.
"Research suggests that when the family of someone who is officially diagnosed with Alzheimer's becomes educated about the disease, and they work together with medical professionals on a care plan, it can reduce the patient's difficult behavioral and psychiatric symptoms." said Maria Carrillo, PhD, Senior Director of Medical and Scientific Relations at the Alzheimer's Association. "It can also lower the family caregiver's anxiety, depression and stress."
Alzheimer's care management helps people with the disease and their families to find resources, make decisions, and manage stress. For example, a care manager can help families with decisions about in-home care services, or long-term care whether at home or in a nursing facility.
The study, titled the Dementia Demonstration Project (DDP), was an interdisciplinary effort led by the Geriatric Research, Education and Clinic Center at the Minneapolis Veterans Medical Center. Seven VA Medical Centers took part in the project, which was created to increase detection and diagnosis of dementia in primary care and provide information, support, and care coordination for veterans with newly diagnosed dementia.
In the DDP clinics, once a patient was diagnosed with cognitive impairment, the dementia care team met with the patient and family to review the results, discuss the diagnosis, and outline treatment recommendations.
Interventions were targeted to the severity of dementia and the specific needs of the patient and their caregivers. Informational material, assistance in identifying needed services, and direct support and training from team members was provided, as needed.
"The most important goals of the program were making sure that all family members understood the disease and were on the same page, that patients remained physically active and socially engaged, and that caregivers had the support they needed," said J. Riley McCarten, MD, the project's lead physician.Healthcare costs data showed that veterans diagnosed in the DDP clinics saw their average outpatient healthcare costs decline by about 29 percent (-$1,991) in the year after diagnosis of cognitive impairment compared with the year before diagnosis. "We see in this study's findings that early diagnosis and case management in dementia may also significantly lower healthcare costs. This could have a reverberating positive impact throughout the entire healthcare system," Carrillo said.
Source: The Alzheimer's Association is the leading voluntary health organization in Alzheimer care, support and research. Visit www.alz.org or call 800-272-3900
Right at Home is a national organization dedicated to improving the quality of life for those we serve. We fulfill that mission through a dedicated network of locally owned, franchised providers of in-home care and assistance services.
With the aging of America, the number of Alzheimer’s cases is growing rapidly.
Early detection, diagnosis and care management for people newly diagnosed with cognitive impairment and dementia reduces outpatient costs by almost 30 percent, according to new research reported at the recent Alzheimer's Association International Conference on Alzheimer's Disease 2010.
According to the Alzheimer's Association, dementia is a common, costly, and often unrecognized problem in older adults. In order to provide better medical care and outcomes for people with Alzheimer's and other dementias, the conditions must first be detected and diagnosed, and needed care management must be provided.
"Research suggests that when the family of someone who is officially diagnosed with Alzheimer's becomes educated about the disease, and they work together with medical professionals on a care plan, it can reduce the patient's difficult behavioral and psychiatric symptoms." said Maria Carrillo, PhD, Senior Director of Medical and Scientific Relations at the Alzheimer's Association. "It can also lower the family caregiver's anxiety, depression and stress."
Alzheimer's care management helps people with the disease and their families to find resources, make decisions, and manage stress. For example, a care manager can help families with decisions about in-home care services, or long-term care whether at home or in a nursing facility.
The study, titled the Dementia Demonstration Project (DDP), was an interdisciplinary effort led by the Geriatric Research, Education and Clinic Center at the Minneapolis Veterans Medical Center. Seven VA Medical Centers took part in the project, which was created to increase detection and diagnosis of dementia in primary care and provide information, support, and care coordination for veterans with newly diagnosed dementia.
In the DDP clinics, once a patient was diagnosed with cognitive impairment, the dementia care team met with the patient and family to review the results, discuss the diagnosis, and outline treatment recommendations.
Interventions were targeted to the severity of dementia and the specific needs of the patient and their caregivers. Informational material, assistance in identifying needed services, and direct support and training from team members was provided, as needed.
"The most important goals of the program were making sure that all family members understood the disease and were on the same page, that patients remained physically active and socially engaged, and that caregivers had the support they needed," said J. Riley McCarten, MD, the project's lead physician.Healthcare costs data showed that veterans diagnosed in the DDP clinics saw their average outpatient healthcare costs decline by about 29 percent (-$1,991) in the year after diagnosis of cognitive impairment compared with the year before diagnosis. "We see in this study's findings that early diagnosis and case management in dementia may also significantly lower healthcare costs. This could have a reverberating positive impact throughout the entire healthcare system," Carrillo said.
Source: The Alzheimer's Association is the leading voluntary health organization in Alzheimer care, support and research. Visit www.alz.org or call 800-272-3900
Right at Home is a national organization dedicated to improving the quality of life for those we serve. We fulfill that mission through a dedicated network of locally owned, franchised providers of in-home care and assistance services.
Sunday, September 26, 2010
A Matter of her mind...and my Heart
I have to get busy and write that second edition to my book Matters of the Mind...and the Heart. I was heartened to hear an attendee at one of my talks that my book was like her Bible; she continually referred to it. That sure makes writing it worth my effort.
This week I'm having repair shoulder surgery and won't be able to write for a while. I love writing; about Alzheimer's, about my journey through Alzheimer's, and commenting on other writers and presenters. Last Thursday I heard David Troxel who, along with Virginia Bell, wrote The Best Friends Approach to Alzheimer's. His talk was so encouraging; that caregivers are catching on to treating the person with dementia with dignity. All one has to do to figure out what that means is to examine what makes you feel valued as a person of worth. He talked about elements of KNACK, which is approaching care of the person with an attitude of good will. Some elements of Knack are: being well informed, having empathy, respecting the basic rights of the person, using common sense, communicating skillfully, being optimistic, using humor, developing flexibility, patience, connecting with the spiritual, and something good for everyone, valuing the moment. You've met people with Knack; maybe you are one. I taught homecare aides in the 1990s and there were about 5 of these women who had Knack; a natural love of their clients and a desire to make life better for them. I hope when I need a caregiver, I'll have one with Knack. Don't you?
This week I'm having repair shoulder surgery and won't be able to write for a while. I love writing; about Alzheimer's, about my journey through Alzheimer's, and commenting on other writers and presenters. Last Thursday I heard David Troxel who, along with Virginia Bell, wrote The Best Friends Approach to Alzheimer's. His talk was so encouraging; that caregivers are catching on to treating the person with dementia with dignity. All one has to do to figure out what that means is to examine what makes you feel valued as a person of worth. He talked about elements of KNACK, which is approaching care of the person with an attitude of good will. Some elements of Knack are: being well informed, having empathy, respecting the basic rights of the person, using common sense, communicating skillfully, being optimistic, using humor, developing flexibility, patience, connecting with the spiritual, and something good for everyone, valuing the moment. You've met people with Knack; maybe you are one. I taught homecare aides in the 1990s and there were about 5 of these women who had Knack; a natural love of their clients and a desire to make life better for them. I hope when I need a caregiver, I'll have one with Knack. Don't you?
Monday, September 20, 2010
An article on Frontotemporal Dementia
This is an article from Alzheimer's Weekly. You can log on to www.alzheimersweekly.com/RESEARCH
Frontotemporal dementia (FTD), sometimes called frontal lobe dementia, describes a group of diseases characterized by degeneration of nerve cells - especially those in the frontal and temporal lobes of the brain. Unlike AD, FTD usually does not include formation of amyloid plaques. In many people with FTD, there is an abnormal form of tau protein in the brain, which accumulates into neurofibrillary tangles. This disrupts normal cell activities and may cause the cells to die.
Experts believe FTD accounts for 2 to 10 percent of all cases of dementia. Symptoms of FTD usually appear between the ages of 40 and 65. In many cases, people with FTD have a family history of dementia, suggesting that there is a strong genetic factor in the disease. The duration of FTD varies, with some patients declining rapidly over 2 to 3 years and others showing only minimal changes for many years. People with FTD live with the disease for an average of 5 to 10 years after diagnosis.
Because structures found in the frontal and temporal lobes of the brain control judgment and social behavior, people with FTD often have problems maintaining normal interactions and following social conventions. They may steal or exhibit impolite and socially inappropriate behavior, and they may neglect their normal responsibilities. Other common symptoms include loss of speech and language, compulsive or repetitive behavior, increased appetite, and motor problems such as stiffness and balance problems. Memory loss also may occur, although it typically appears late in the disease.
Frontotemporal dementia (FTD), sometimes called frontal lobe dementia, describes a group of diseases characterized by degeneration of nerve cells - especially those in the frontal and temporal lobes of the brain. Unlike AD, FTD usually does not include formation of amyloid plaques. In many people with FTD, there is an abnormal form of tau protein in the brain, which accumulates into neurofibrillary tangles. This disrupts normal cell activities and may cause the cells to die.
Experts believe FTD accounts for 2 to 10 percent of all cases of dementia. Symptoms of FTD usually appear between the ages of 40 and 65. In many cases, people with FTD have a family history of dementia, suggesting that there is a strong genetic factor in the disease. The duration of FTD varies, with some patients declining rapidly over 2 to 3 years and others showing only minimal changes for many years. People with FTD live with the disease for an average of 5 to 10 years after diagnosis.
Because structures found in the frontal and temporal lobes of the brain control judgment and social behavior, people with FTD often have problems maintaining normal interactions and following social conventions. They may steal or exhibit impolite and socially inappropriate behavior, and they may neglect their normal responsibilities. Other common symptoms include loss of speech and language, compulsive or repetitive behavior, increased appetite, and motor problems such as stiffness and balance problems. Memory loss also may occur, although it typically appears late in the disease.
Wednesday, September 8, 2010
Vacation Lessons
My husband and I took a week's vacation which turned out very different from what was planned. The plan was to sail for 6 days in our 30 foot Nonesuch named So Far So Good (appropriate name for 2 people who make one whole sailor). Then business had to be attended to. Then Hurrican Earl was predicted and then fizzled out, making us unhappy we hadn't sailed anyway. We have friends who need a time, a destination and their expectations met every step of the way. They are not sailors; sailors cannot control the wind direction, the current, wave height or the weather. Sailors get up, find out if the wind will take them to their planned destination, and if not, they change direction.
A colleague has a training business in Alzheimer care. Her motto is: You can't change the wind, but you can adjust your sails. So true. Often the change brings unexpected joys. It made me think how often plans get changed when you are a caregiver for someone with Alzheimer's. Often you can't plan easily, as so much can interrupt well laid plans when you're a caregiver. Many unexpected 'happenings' can alter plans. How do you handle the uncertainty? I think the successful caregiver is flexible and kind of loosey-goosey, not rattled by change, able to switch gears easily.
Our vacation took a new twist. We were not on the water. We took day trips;one to Norman Rockwell's Museum in Stockbridge (a delightful trip), one to Maine to LL Bean and favorite haunts for good seafood (clam cakes), and on the last day we toured our own city Quincy in a trolley to visit the Adams Mansion and John and John Quincy's birthplaces. It was reminiscent of our dating days, driving, easily chatting and having good meals together. It turned out to be a restful vacation after all; not what we'd planned, but delightful nontheless. Can you approach your caregiving experience like that? It would help to learn to.
A colleague has a training business in Alzheimer care. Her motto is: You can't change the wind, but you can adjust your sails. So true. Often the change brings unexpected joys. It made me think how often plans get changed when you are a caregiver for someone with Alzheimer's. Often you can't plan easily, as so much can interrupt well laid plans when you're a caregiver. Many unexpected 'happenings' can alter plans. How do you handle the uncertainty? I think the successful caregiver is flexible and kind of loosey-goosey, not rattled by change, able to switch gears easily.
Our vacation took a new twist. We were not on the water. We took day trips;one to Norman Rockwell's Museum in Stockbridge (a delightful trip), one to Maine to LL Bean and favorite haunts for good seafood (clam cakes), and on the last day we toured our own city Quincy in a trolley to visit the Adams Mansion and John and John Quincy's birthplaces. It was reminiscent of our dating days, driving, easily chatting and having good meals together. It turned out to be a restful vacation after all; not what we'd planned, but delightful nontheless. Can you approach your caregiving experience like that? It would help to learn to.
Wednesday, August 25, 2010
New article from Right at Home Newsletter: Dressing
Alzheimer's Caregiver Tips: Helping Your Loved One Dress
_______________________
Throughout our lives, most of us put a fair amount of care and attention into choosing and caring for the clothes we wear. But for people with Alzheimer's disease and other dementia, dressing can be a challenge. And for family, seeing the difference in their loved one, who once took great pride in how they looked, is a reminder of how their loved one has changed.
_______________________
Family caregivers may be confused about whether to step in when Dad selects a plaid shirt and clashing plaid trousers, or Mom puts her blouse on inside out. And their loved one may be resistant to assistance. The National Institute on Aging offers these suggestions on assisted independence, to make the process go more smoothly.
People with Alzheimer's disease often need more time to dress. It can be hard for them to choose their clothes. They might wear the wrong clothing for the season. They also might wear colors that don't go together or forget to put on a piece of clothing. Allow the person to dress on his or her own for as long as possible.
Here are some tips that can help:
Lay out clothes in the order the person should put them on, such as underwear first, then pants, then a shirt, and then a sweater.
Hand the person one thing at a time or give step-by-step dressing instructions.
Put away some clothes in another room to reduce the number of choices. Keep only one or two outfits in the closet or dresser.
Keep the closet locked if needed. This prevents some of the problems people may have while getting dressed.
Buy three or four sets of the same clothes, if the person wants to wear the same clothing every day.
Buy loose-fitting, comfortable clothing. Avoid girdles, control-top pantyhose, knee-high nylons, garters, high heels, tight socks, and bras for women. Sports bras are comfortable and provide good support. Short cotton socks and loose cotton underwear are best. Sweat pants and shorts with elastic waistbands are helpful.
Use Velcro or large zipper pulls for clothing, instead of shoelaces, buttons, or buckles. Try slip-on shoes that won't slide off or shoes with Velcro straps.
This information provided by the National Institute on Aging's Alzheimer’s Disease Education and Referral Center (ADEAR). Visit the ADEAR website for more information on effective dementia caregiving.
_______________________
Throughout our lives, most of us put a fair amount of care and attention into choosing and caring for the clothes we wear. But for people with Alzheimer's disease and other dementia, dressing can be a challenge. And for family, seeing the difference in their loved one, who once took great pride in how they looked, is a reminder of how their loved one has changed.
_______________________
Family caregivers may be confused about whether to step in when Dad selects a plaid shirt and clashing plaid trousers, or Mom puts her blouse on inside out. And their loved one may be resistant to assistance. The National Institute on Aging offers these suggestions on assisted independence, to make the process go more smoothly.
People with Alzheimer's disease often need more time to dress. It can be hard for them to choose their clothes. They might wear the wrong clothing for the season. They also might wear colors that don't go together or forget to put on a piece of clothing. Allow the person to dress on his or her own for as long as possible.
Here are some tips that can help:
Lay out clothes in the order the person should put them on, such as underwear first, then pants, then a shirt, and then a sweater.
Hand the person one thing at a time or give step-by-step dressing instructions.
Put away some clothes in another room to reduce the number of choices. Keep only one or two outfits in the closet or dresser.
Keep the closet locked if needed. This prevents some of the problems people may have while getting dressed.
Buy three or four sets of the same clothes, if the person wants to wear the same clothing every day.
Buy loose-fitting, comfortable clothing. Avoid girdles, control-top pantyhose, knee-high nylons, garters, high heels, tight socks, and bras for women. Sports bras are comfortable and provide good support. Short cotton socks and loose cotton underwear are best. Sweat pants and shorts with elastic waistbands are helpful.
Use Velcro or large zipper pulls for clothing, instead of shoelaces, buttons, or buckles. Try slip-on shoes that won't slide off or shoes with Velcro straps.
This information provided by the National Institute on Aging's Alzheimer’s Disease Education and Referral Center (ADEAR). Visit the ADEAR website for more information on effective dementia caregiving.
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