Alzheimer’s caregivers may be able to plan for vacation time
http://www.huffingtonpost.com/eric-j-hall/alzheimers-caregivers_b_3545683.html
For millions of people caring for someone with Alzheimer’s disease, the idea of taking a vacation may seem unrealistic. However, a relaxing vacation to clear the mind, recharge and return as a more-attentive caregiver is possible with some planning.
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Learn about respite care >>
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Reading, hobbies may help lower risk
of dementia
Brain-stimulating activities such as reading, writing letters and solving everyday problems may help prevent clinical signs of dementia, a new study shows. Researchers said keeping the brain active seems to help certain brain circuits operate effectively. Study participants who engaged in frequent mental activity later in life had a 32 percent lower rate of mental decline than those with average activity.
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Association to continue to advocate for coverage of diagnostic tool
http://www.alz.org/news_and_events_coverage_of_diagnostic_tool.asp?WT.mc_id=enews2013_07_10
The Alzheimer’s Association is disappointed by the Centers for Medicare & Medicaid Services (CMS) draft coverage decision on brain amyloid imaging, particularly given the clear, scientific consensus recommendations provided to CMS by the Association and the Society for Nuclear Medicine and Molecular Imaging (SNMMI) regarding appropriate, limited coverage, only in specific populations. The Association will continue to engage the scientific and health care communities, as well as advocates, to educate CMS on behalf of our constituents about the benefits of coverage for brain amyloid imaging.
Read the Association’s statement >>
The Alzheimer’s Association is disappointed by the Centers for Medicare & Medicaid Services (CMS) draft coverage decision on brain amyloid imaging, particularly given the clear, scientific consensus recommendations provided to CMS by the Association and the Society for Nuclear Medicine and Molecular Imaging (SNMMI) regarding appropriate, limited coverage, only in specific populations.
The Alzheimer’s Association understands that CMS’ evaluation of the impact of brain amyloid imaging on health outcomes is ongoing, however the needs of Alzheimer’s community are acute. With 5 million Americans living with Alzheimer’s and more than 15 million people providing care, the need to accelerate improved care and an early and accurate diagnosis today, when scientifically supported, is critical. Neither families directly impacted by the disease, nor our federal government, can afford to wait as much as seven years for a final decision about national coverage, as was the case with the National Oncology Patient Registry and the evaluation by CMS of FDG PET coverage.
Seven years ago, this brain amyloid imaging technology did not even exist. The timeframe at which CMS has conducted CED processes is wholly unsuited and unacceptable to both the pace of scientific and technological innovation in the Alzheimer’s field, and more importantly, the rapidly increasing needs posed by the escalating Alzheimer’s epidemic. If the federal government follows this example and timeline, it will hinder coverage of a badly needed, already FDA approved diagnostic tool in limited populations in which sufficient evidence indicates this technology has meaningful impact.
Understanding that this is a draft decision from CMS, and it is not yet final, the Alzheimer’s Association will continue to engage the scientific and healthcare communities, as well as advocates, to educate CMS on behalf of our constituents about the benefits of coverage for brain amyloid imaging — in limited populations as defined by the scientifically-driven appropriate use criteria — as CMS develops a final decision.
A report of the task force convened by the Alzheimer’s Association and SNMMI that describes appropriate use of brain amyloid imaging was published online as an article in press on Jan. 28, 2013, by Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association and Journal of Nuclear Medicine. According to those criteria, appropriate candidates for amyloid PET imaging are limited to:
As the largest scientifically-based patient advocacy group in the field of Alzheimer’s and dementia, the Alzheimer’s Association strongly supports early and accurate diagnosis of Alzheimer’s disease. An early diagnosis has been found to lead to better outcomes and higher quality of life for people living with the disease and their families by: enabling earlier access to appropriate treatments, allowing the family to build a care team and seek out education and support services, enabling enrollment in Alzheimer’s/dementia clinical trials, and providing an opportunity for the development of advance directives and financial planning.
We encourage CMS to have an open dialogue with all stakeholders in creating its final decision, so that the needs of all parties may be identified and taken into consideration.
Alzheimer’s Association
The Alzheimer’s Association is the world’s leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer’s. For more information, visit www.alz.org.
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Why we need to fight the stigma of Alzheimer’s disease
Stigma and stereotypes are a significant obstacle to the well-being and quality of life for those with dementia and their families. People with Alzheimer’s say they’re often misunderstood because of the myths and misconceptions others have about the disease. Working together, we can take steps to overcome stigma around Alzheimer’s.
Learn more about overcoming stigma >>
Facing stigma is often a primary concern of people living with Alzheimer’s and their caregivers. Those with the disease report being misunderstood because of the myths and misconceptions others have about the disease.
Why fight stigma
The stigma experience
Five tips
Take action
Stigma is the use of negative labels to identify a person with a disability or illness. Stigma around Alzheimer’s disease exists, in part, due to the lack of public awareness and understanding of the disease, preventing people from:
Breaking Past Stigma & Finding Hope: Rob Epp, who is caregiver for his partner Jordan, shares how he is helping change misperceptions of Alzheimer’s, one person at a time. Read more.
Stigma and lack of awareness also impacts Alzheimer’s disease research. The government funds Alzheimer’s research at lower rates than other diseases, even when the cost of caring for Alzheimer’s disease is significantly higher.
Learn more: Planning Ahead, Treatments, and Clinical Trials
Stigma and stereotypes are a significant obstacle to the well-being and quality of life for those with dementia and their families. Here are some examples of the impact of Alzheimer’s stigma:
There is a stigma, in that some people “quietly” de-communicate. As such, you usually find out later they don’t even talk to you again, unless you cross paths.
– A person with Alzheimer’s
The following tips are based on the advice and experience of current and former members of the National Alzheimer’s Association Early-Stage Advisory Group, which consists of individuals in the early stage of the disease who help raise awareness about the disease.
Working together, we can take steps to overcome stigma around Alzheimer’s disease.
http://www.optimumseniorcare.com/services/alzheimerscare.php
Couple dealing with Alzheimer’s holds on to memories
http://www.npr.org/2013/06/29/196250975/despite-alzheimer-s-couple-holds-tight-to-old-memories
Pansy Greene, 73, is in the early stages of Alzheimer’s disease. She and her husband, Winston, say that their journey, as they call it, describes not only grappling with Alzheimer’s but also their relationship — which began when they met as teenagers.
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Right now, 5 million Americans have Alzheimer’s disease and other dementias. One of them is 73-year-old Pansy Greene. She’s in the early stages of Alzheimer’s, and she and her husband, Winston, want people to know that so far, their daily lives have changed little despite the diagnosis.
They sit side by side on a loveseat in their den, each with a dog in his or her lap to cut down on the barking. That makes it easier for the Greenes to talk about what they call their “journey,” a term that refers to much more than Pansy’s struggle with Alzheimer’s; it describes the partnership that began when they met at a party as teenagers.
“He didn’t let go of me the whole night,” recalls Pansy. “He wouldn’t let anybody else dance with me.” He asked for her phone number. “I guess I gave it to him,” she says with a laugh.
Pansy and Winston Greene got married when she was 16 and he was 18. They raised three daughters and spent their entire careers in the aerospace industry. Winston worked on the B-1 bomber; Pansy worked on the space shuttle. They now have the kind of retirement people dream of: a comfortable suburban home with a view of the hills north of Los Angeles. It’s close to two of their daughters, grandchildren and great-grandchildren.
But one day about three years ago, Pansy got lost trying to drive home from a place she went all the time. She called her son-in-law, “and he said, ‘Just tell me the cross streets, and I’ll come and get you.’ ” It didn’t take him very long, “so I wasn’t that far from home,” says Pansy, “but I couldn’t find my way out.”
In the early stages of Alzheimer’s, it’s short-term memory that goes first. Winston noticed that Pansy was forgetting things that had just happened. She’d talk to her granddaughter on the phone, for example, and then the next day when her granddaughter called again, Pansy would say “Oh my goodness, it’s good talking to you. I haven’t talked to you in a long, long time.” Winston says those were the “subtle things that says that maybe there might be a problem.”
But it was a yearlong quest to get a diagnosis. The Greenes say the family doctor told Pansy, “Well, you’re getting old. We all forget things.” But he gave her a prescription for Aricept, a drug that helps with memory loss in Alzheimer’s patients, though it doesn’t halt the progression of the disease.
A Family History
Eventually she got a firm diagnosis at the University of California, Irvine. By that time the diagnosis wasn’t a shock. But when she gave family members the news, she was surprised to learn that several relatives — living and dead — also had Alzheimer’s.
“Everybody’s so secretive about everything,” Pansy says. “Nobody talks about it. I said, ‘Nobody told me that our cousin died of Alzheimer’s. … Why are you guys keeping it a secret?’ ”
So she told all of her family members about her own diagnosis, “so they’ll know where to go and get treatment or get some help” if they ever need it.
Family history isn’t Pansy’s only risk factor. Her high blood pressure may have played a role. Also, African-Americans are roughly twice as likely to get Alzheimer’s as whites. But she doesn’t fret over what she can’t change. She’s focused on doing what she can.
“It’s helping me a lot being active,” she says, “and doing my crossword puzzles.” But mostly she reads the Bible. “It helps me to focus and think.”
The support groups she attends along with Winston also help. He says the changes in their life have been small and gradual.
“There are certain things that Pansy was doing that I’m doing now,” Winston says. For example, he’s taken over writing the checks. But “every so often,” he says, “I would say ‘Pansy, go in and write the checks,’ and I think I do that just to see if she can still do it the way that she was doing it [before]. And she can.”
But he’s had to become more patient.
“If I see that Pansy may forget something, I don’t have to say, ‘Oh well, Baby, you just told me that,’ ” says Winston. “That’s what I have to really work on myself.” Instead, he tries to say, ” ‘We put it on the calendar,’ and then [I] just answer her question.”
Patience is all Pansy asks for. “That’s all I can do,” she says.
One Day At A Time
And life goes on. They still go to the movies and baby-sit their great-grandkids. And they’re continuing to travel. They’ve gone all over the world with a group of friends. This fall they’re taking a two-week river cruise in Russia. They had to book it more than a year ago. It was a risk.
But Winston says that “one of the keys [is] you have to have faith. And we just had the faith that things would be OK when we go in September. We’re not … holy rollers, but we believe, and the faith, I think, has taken us to where we are today.”
One way Winston maintains his faith in the future is by not thinking about it too much. Pansy’s held her own for three years, but he knows that won’t last forever.
“I cannot look ahead,” he says. “I would go crazy, and I’m not about to do that.” Then he laughs, “We don’t need no problems with me in this household.”
The Greenes say they’re taking it a day at a time — and relishing the many long-term memories of the journey they’ve shared for nearly 60 years.
NPR’s Ina Jaffe covers aging, and she’s going to check in with the Greenes from time to time. This is their first conversation.
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