The Department of Veterans Affairs is pleased with the success of their REACH VA pilot program to help caregivers of veterans with Alzheimer’s and plans to expand the program nationally. By relieving caregiver stress, the veterans receive better care at home.
The REACH program provided caregivers:
• Twelve in-home visits and telephone counseling sessions
• Five telephone support group sessions
• A Caregiver Guide with forty-eight behavioral and stress topics
• Safety and behavior management education
• Training for health and well being
The caregivers who had the benefit of these program reported they were less depressed, not as frustrated, and were less burdened on a daily basis with caregiving duties. Caregivers also reported fewer dementia-related behaviors with the veteran under their care.
I applaud the VA for recognizing the benefits of taking care of the caregiver. If your loved one with dementia is a veteran, you should check into the REACH VA program.
If your loved one is not a veteran, please contact your local Alzheimer’s Association chapter. They, too, provide training and support for caregivers.
The five core services of an Alzheimer’s Association chapter:
1. Information and Referral
2. Care consultation
3. Support Groups
4. Safety Services
5. Education
Details on these services can be found at http://www.alz.org/we_can_help_local_chapters_wch.asp
As a caregiver, my lifeline was the partnership I formed with my local chapter. Through their educational programs I gained confidence as a caregiver, knowing I had the benefit of expert knowledge. I received respite funds to help defray the cost of in-home care. At support group I learned from the facilitators and from the experiences of other caregivers. Through my local chapter I registered Jim with Safe Return. I pored over every newsletter the chapter sent out to learn about new treatments and just to find out what was going on with other caregivers.
The VA has taken a giant step in the right direction to REACH out to caregivers. Visit www.caregiver.va.gov to learn more about this program.
Caring for a person with dementia can be overwhelming. The health and wellbeing of the caregiver is crucial to keep our loved ones at home as long as possible. By knowing and using the resources available in your community, you will be a better caregiver.
Copyright © April 2011 L. S. Fisher
http://earlyonset.blogspot.com
Showing posts with label Alzheimer's Association. Show all posts
Showing posts with label Alzheimer's Association. Show all posts
Thursday, April 7, 2011
Saturday, August 2, 2008
News from ICAD: Elderspeak Increases Resistance to Care
Researchers are not only trying to find a cure for Alzheimer’s, they want to improve quality of life and improve the standard of care for people with dementia. The results of an ongoing study released at the 2008 Alzheimer’s Association International Conference on Alzheimer’s Disease (ICAD) involves communication. Researchers used “Elderspeak” to define a communication method similar to a parent using baby-talk phrases such as, “Sweetie pie, it’s time for us to get up now” or “That’s a no-no!” This study validates what we caregivers knew all along: Our loved ones with dementia are adults and need to be treated with respect.
During the study, resistance to care was measured in relationship to dementia care unit staff’s communication with the residents. The communication styles were broken down into normal talk, elderspeak, and silence. The study shows that it is significantly more effective to talk to residents in normal conversation than elderspeak. Silence was neutral.
Jim developed aphasia early in his disease and we learned to cope with his diminishing grasp of spoken and written communication. In effect, my unscientific study spanned ten years. I never used baby talk, but it was perfectly acceptable for me to call Jim by endearments because I always had. In fact, one time when I addressed him as “Jim” in front of our kids, they both giggled because they had NEVER heard either one of us call the other by name. Yet, I know that once Jim was in the nursing home, he had to cringe when staff called him by an intimate endearment reserved for use by people who loved him.
When a person’s spoken language is limited, and they are ordered to do something in an unkind tone, or treated like a child, they will react in the only way they can—by resisting. This resistance is looked upon as “behavior” and reflects upon the resident rather than the staff.
Some states require dementia specific training with communication as one of the elements. The results of this study should be reason enough for long term care facilities to go above and beyond any state laws in improving communication between staff and residents. When a resident resists care, it is stressful for staff and increases the time required to complete a task.
Using respectful communication methods is a win-win situation whether your loved one is at home or in long term care. Proper training allows staff to perform at an efficient level, and residents will be more cooperative. Family caregivers can benefit from the knowledge that their communication style can greatly impact their caregiving success.
Source: Respectful Adult Communications Improves Quality of Care in Alzheimer’s at http://www.alz.org/. The study conducted by Kristine N. Williams, RN, PhD, and the University of Kansas School of Nursing was funded by the National Institute of Health.
During the study, resistance to care was measured in relationship to dementia care unit staff’s communication with the residents. The communication styles were broken down into normal talk, elderspeak, and silence. The study shows that it is significantly more effective to talk to residents in normal conversation than elderspeak. Silence was neutral.
Jim developed aphasia early in his disease and we learned to cope with his diminishing grasp of spoken and written communication. In effect, my unscientific study spanned ten years. I never used baby talk, but it was perfectly acceptable for me to call Jim by endearments because I always had. In fact, one time when I addressed him as “Jim” in front of our kids, they both giggled because they had NEVER heard either one of us call the other by name. Yet, I know that once Jim was in the nursing home, he had to cringe when staff called him by an intimate endearment reserved for use by people who loved him.
When a person’s spoken language is limited, and they are ordered to do something in an unkind tone, or treated like a child, they will react in the only way they can—by resisting. This resistance is looked upon as “behavior” and reflects upon the resident rather than the staff.
Some states require dementia specific training with communication as one of the elements. The results of this study should be reason enough for long term care facilities to go above and beyond any state laws in improving communication between staff and residents. When a resident resists care, it is stressful for staff and increases the time required to complete a task.
Using respectful communication methods is a win-win situation whether your loved one is at home or in long term care. Proper training allows staff to perform at an efficient level, and residents will be more cooperative. Family caregivers can benefit from the knowledge that their communication style can greatly impact their caregiving success.
Source: Respectful Adult Communications Improves Quality of Care in Alzheimer’s at http://www.alz.org/. The study conducted by Kristine N. Williams, RN, PhD, and the University of Kansas School of Nursing was funded by the National Institute of Health.
Saturday, July 12, 2008
From Memory Walk to Memory Talk
“I want to go to the Memory Walk because I’m having trouble with my memory,” Jim said. He had spotted a small ad about the upcoming walk in the Sedalia Democrat. I hadn’t mentioned the walk but had already registered and raised $400. I thought Jim wouldn’t want to go because it was for Alzheimer’s.
When the doctor told Jim he had probable Alzheimer’s, Jim’s reaction was, “I guarantee you, I do NOT have THAT!” I didn’t want to believe it either, but what began as memory glitches had developed into gaping deficits. By Memory Walk time, Jim was on Aricept, but it made him sick and he resented taking an Alzheimer’s drug.
We arrived at Liberty Park, expecting a crowd of walkers. We joined Helen and Chuck from Slater, Penny and Joetta from the Mid-Missouri Chapter, and Penny’s German shepherd, Vicky, beneath the small shelter.
Helen, an energetic, vivacious 70ish woman had organized the walk because the Association couldn’t find anyone in Sedalia to do it. She toted a hunter’s horn, and was raring to go.
We received tee-shirts, sweatshirts, caps, cups, and water bottles. I donned my purple tee-shirt, but Jim insisted on wearing his cowboy hat and denim shirt. We waited. Walk time arrived, and no one else showed up.
Our small group headed toward the downtown area. Helen blew her horn, and we collected donations from the few people we met on the street and most of the downtown businesses. It was hot, and Jim began to sweat, but he was a real trouper and wanted to continue the walk. Helen swooped into the VFW Hall on Ohio Street. The veterans asked her to blow her hunter’s horn, and the sound bugled throughout the building.
Jim collected the largest donation of the day from Wilken’s Music Store, where he was a regular customer. He was excited about people giving us contributions and with no concept of the value of money, pocket change was just as exciting to him as ten-dollar bills. In all, the Sedalia Walk earned about $600 that year
The Mid-Missouri Chapter asked me to organize the 1999 walk. I had never been involved in community service, and this was a giant step for me. The Sedalia Memory Walks were successful initially due to family support. Eventually the walk was embraced by our entire community. My passion carried me through five years as coordinator. Our six walkers mushroomed into 444 walkers who contributed $36,000.
The decision to become the Memory Walk Coordinator changed my life. Throughout Jim’s illness, being an Alzheimer’s Association volunteer gave me a sense of purpose and became my lifeline. The Mid-Missouri Chapter staff and Board gave me a Kleenex to dry my eyes and inspired me on my life’s greatest mission. Over the past ten years, I’ve been a primary caregiver, a support group facilitator, an Alzheimer’s Board Member and Assembly Delegate, a spokesperson, and active advocate for people with Alzheimer’s and their families.
I’m not telling you these things so you will think I’m a giving person; I have received so much more than I’ve ever given. Jim developing early onset dementia was my life’s greatest heartbreak, but this tragedy gave birth to my greatest blessings.
Being an Alzheimer’s volunteer, I’ve met amazing people, made life-long friends, and had opportunities I never dreamed could be possible. I share my experiences through Memory Talk presentations and book projects. I see sunshine breaking through the giant shadow of Alzheimer’s.
Every journey begins with one step, so make sure your step is in the right direction. May you walk the Memory Walk and talk the Memory Talk to make the world better for the 5.2 million Americans with Alzheimer’s.
*****
To find a Memory Walk near you, call your local Alzheimer’s Association Chapter or visit http://www.alz.org/ and click on your state on the map. You don’t have to be an athlete. Our top fundraiser for years called all her friends and never left her home. If you prefer email, the Alzheimer’s Association’s Kintera makes fundraising easy.
For information on Memory Talk presentations, visit http://www.lsfisher.com/, and click on the Alzheimer's Speaker link. Alzheimer's Anthology of Unconditional Love available at Barnesandnoble.com, Amazon.com, and selected Missouri Barnes and Noble stores.
When the doctor told Jim he had probable Alzheimer’s, Jim’s reaction was, “I guarantee you, I do NOT have THAT!” I didn’t want to believe it either, but what began as memory glitches had developed into gaping deficits. By Memory Walk time, Jim was on Aricept, but it made him sick and he resented taking an Alzheimer’s drug.
We arrived at Liberty Park, expecting a crowd of walkers. We joined Helen and Chuck from Slater, Penny and Joetta from the Mid-Missouri Chapter, and Penny’s German shepherd, Vicky, beneath the small shelter.
Helen, an energetic, vivacious 70ish woman had organized the walk because the Association couldn’t find anyone in Sedalia to do it. She toted a hunter’s horn, and was raring to go.
We received tee-shirts, sweatshirts, caps, cups, and water bottles. I donned my purple tee-shirt, but Jim insisted on wearing his cowboy hat and denim shirt. We waited. Walk time arrived, and no one else showed up.
Our small group headed toward the downtown area. Helen blew her horn, and we collected donations from the few people we met on the street and most of the downtown businesses. It was hot, and Jim began to sweat, but he was a real trouper and wanted to continue the walk. Helen swooped into the VFW Hall on Ohio Street. The veterans asked her to blow her hunter’s horn, and the sound bugled throughout the building.
Jim collected the largest donation of the day from Wilken’s Music Store, where he was a regular customer. He was excited about people giving us contributions and with no concept of the value of money, pocket change was just as exciting to him as ten-dollar bills. In all, the Sedalia Walk earned about $600 that year
The Mid-Missouri Chapter asked me to organize the 1999 walk. I had never been involved in community service, and this was a giant step for me. The Sedalia Memory Walks were successful initially due to family support. Eventually the walk was embraced by our entire community. My passion carried me through five years as coordinator. Our six walkers mushroomed into 444 walkers who contributed $36,000.
The decision to become the Memory Walk Coordinator changed my life. Throughout Jim’s illness, being an Alzheimer’s Association volunteer gave me a sense of purpose and became my lifeline. The Mid-Missouri Chapter staff and Board gave me a Kleenex to dry my eyes and inspired me on my life’s greatest mission. Over the past ten years, I’ve been a primary caregiver, a support group facilitator, an Alzheimer’s Board Member and Assembly Delegate, a spokesperson, and active advocate for people with Alzheimer’s and their families.
I’m not telling you these things so you will think I’m a giving person; I have received so much more than I’ve ever given. Jim developing early onset dementia was my life’s greatest heartbreak, but this tragedy gave birth to my greatest blessings.
Being an Alzheimer’s volunteer, I’ve met amazing people, made life-long friends, and had opportunities I never dreamed could be possible. I share my experiences through Memory Talk presentations and book projects. I see sunshine breaking through the giant shadow of Alzheimer’s.
Every journey begins with one step, so make sure your step is in the right direction. May you walk the Memory Walk and talk the Memory Talk to make the world better for the 5.2 million Americans with Alzheimer’s.
*****
To find a Memory Walk near you, call your local Alzheimer’s Association Chapter or visit http://www.alz.org/ and click on your state on the map. You don’t have to be an athlete. Our top fundraiser for years called all her friends and never left her home. If you prefer email, the Alzheimer’s Association’s Kintera makes fundraising easy.
For information on Memory Talk presentations, visit http://www.lsfisher.com/, and click on the Alzheimer's Speaker link. Alzheimer's Anthology of Unconditional Love available at Barnesandnoble.com, Amazon.com, and selected Missouri Barnes and Noble stores.
Sunday, May 18, 2008
Alzheimer’s Association 20th Annual Public Policy Forum
This was my eighth trip to Washington, DC, to ask for increased research funds for Alzheimer’s. It becomes frustrating when nothing seems to happen. NIH funding for Alzheimer’s research has remained flat for the past five years, and Maureen Reagan’s $1 billion goal appears to be unattainable.
It is our job as advocates to educate our legislators and remain visible. We wore our purple “beauty queen” banners which made us hard to forget. Sandra Day O’Connor and Newt Gingrich both testified at the Congressional Hearing on Alzheimer’s. One of the senators said, “This is the biggest group I have ever seen at a hearing.” The room was crowded and people stood along both walls and in the back. Mrs. O’Connor said, “This is a problem that cries out for help.” She said research was closer than ever to finding a way to dissolve the plaques which are the hallmark of Alzheimer's.
My grandson, Colby, traveled to Washington, DC, with me for his second Public Policy Forum. The Alzheimer’s Association asked us to focus on two main issues this year. We asked for $125 million increase to the $644 million spent on Alzheimer’s research, and to phase out the Social Security disability two-year wait for Medicare benefits. The two-year wait places a hardship on people with early onset dementia during the time when medical treatment is most helpful.
It is more urgent than ever to find a cure for Alzheimer’s as the baby boomers age. “A cure can save Medicare and Medicaid $60 billion a year,” Colby told his parents on the ride home from the airport. “I learned a lot,” he said. And he did. He learned that 500,000 Americans have developed Alzheimer’s before age 65 and more than 5 million people in the United States have Alzheimer’s.
“Why do you stay involved?” is a question I hear frequently. Alicia, who has early onset Alzheimer’s told our representative's legislative aide, “Linda doesn’t have to do what she does since her husband passed away.”
I don’t have any choice but to remain involved. Advocacy didn’t end when Jim died! Through my involvement with advocacy, I’ve become friends with many people who have early onset dementia, and I care about them and their health. I worry about what the future holds for Alicia, Charley, Tracy, Karen, Bill, David, Lynne and many others. I ache for the caregivers because I know how emotionally and physically challenging their journey will be. I grieve for the man whose wife held his hand and led him from session to session at the Public Policy Forum; the lost look in his eyes haunts me and revives memories of Jim.
Alzheimer’s is a disease, not a normal part of aging. We need to advocate for a cure and for programs to help those living with dementia. It is time we have Alzheimer’s survivors to honor at our Memory Walks!
It is our job as advocates to educate our legislators and remain visible. We wore our purple “beauty queen” banners which made us hard to forget. Sandra Day O’Connor and Newt Gingrich both testified at the Congressional Hearing on Alzheimer’s. One of the senators said, “This is the biggest group I have ever seen at a hearing.” The room was crowded and people stood along both walls and in the back. Mrs. O’Connor said, “This is a problem that cries out for help.” She said research was closer than ever to finding a way to dissolve the plaques which are the hallmark of Alzheimer's.
My grandson, Colby, traveled to Washington, DC, with me for his second Public Policy Forum. The Alzheimer’s Association asked us to focus on two main issues this year. We asked for $125 million increase to the $644 million spent on Alzheimer’s research, and to phase out the Social Security disability two-year wait for Medicare benefits. The two-year wait places a hardship on people with early onset dementia during the time when medical treatment is most helpful.
It is more urgent than ever to find a cure for Alzheimer’s as the baby boomers age. “A cure can save Medicare and Medicaid $60 billion a year,” Colby told his parents on the ride home from the airport. “I learned a lot,” he said. And he did. He learned that 500,000 Americans have developed Alzheimer’s before age 65 and more than 5 million people in the United States have Alzheimer’s.
“Why do you stay involved?” is a question I hear frequently. Alicia, who has early onset Alzheimer’s told our representative's legislative aide, “Linda doesn’t have to do what she does since her husband passed away.”
I don’t have any choice but to remain involved. Advocacy didn’t end when Jim died! Through my involvement with advocacy, I’ve become friends with many people who have early onset dementia, and I care about them and their health. I worry about what the future holds for Alicia, Charley, Tracy, Karen, Bill, David, Lynne and many others. I ache for the caregivers because I know how emotionally and physically challenging their journey will be. I grieve for the man whose wife held his hand and led him from session to session at the Public Policy Forum; the lost look in his eyes haunts me and revives memories of Jim.
Alzheimer’s is a disease, not a normal part of aging. We need to advocate for a cure and for programs to help those living with dementia. It is time we have Alzheimer’s survivors to honor at our Memory Walks!
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