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Alzheimer’s Association of Northern California and Northern Nevada Newsletter

On a personal note… (Pam Vickerson)

Blog_PamVickerson1

Henry and Lucille Vickerson

I was living in San Jose, California when my parents visited from Arizona to help take care of me while I was recovering from surgery. My dad was driving me to a medical appointment when he drove right through a stop sign. I said “Dad, you just drove through stop sign!” He looked at me with a dazed expression – he didn’t even know what “stop sign” meant. During the same visit, he needed to use a power drill. My dad, a retired IBM engineer, looked at me and said, “I don’t remember how to use this.”

He was diagnosed with dementia in 1992 and three years later received an Alzheimer’s diagnosis. I would ask him what it felt like to have Alzheimer’s. He told me that in the days he went to work as an engineer he could just look at something and see its schematic in his head – but with the onset of Alzheimer’s he couldn’t see those things any more. He said that he generally felt pretty good in the morning, then as the day went on he would start to feel what he described as a fog rolling in. It would get hazy, then he’d get sleepy and then he wouldn’t remember anything. I remember those days when I could see him glazing over. He would nod when I asked him if the fog was rolling in again. Continue reading “On a personal note… (Pam Vickerson)” »

Caregiver Corner: Late Stage Care

LateStage

The late stage of Alzheimer’s disease may last from several weeks to several years. As the disease advances, intensive, around-the-clock care is usually required. It’s during this time that many families will make some of the hardest care decisions.

Since care needs are extensive during the late stage, they may exceed what you can provide at home, even with additional assistance. This may mean moving the person into a facility in order to get the careneeded.

Deciding on late-stage care can be difficult. Families that have been through the process tell us that it is best to gather information and move forward, rather than second guessing decisions after the fact. There are many good ways to provide quality care. Remember, regardless of where the care takes place, the decision is about making sure the person receives the care needed.

During the late stages of Alzheimer’s, your role as a caregiver focuses on preserving quality of life and dignity. Although a person in the late stage of Alzheimer’s typically loses the ability to talk and express needs, research tells us that some core of the person’s self remains. This means you may be able to continue to connect throughout the late stage of the disease. Continue reading “Caregiver Corner: Late Stage Care” »

Alzheimer’s basics: How to answer 5 common Alzheimer’s questions

What is the difference between Alzheimer’s and dementia?

AlzBasicsDementia is not a specific disease. It’s a broad term that describes a wide range of symptoms, including memory loss or thinking problems that are severe enough to interfere with daily life. Many conditions can cause dementia symptoms, including some that are reversible, such as thyroid problems and vitamin deficiencies. Alzheimer’s disease is the most common form of dementia, accounting for 60 to 80 percent of dementia cases. Alzheimer’s is progressive, which means the symptoms will worsen over time. There is no cure for Alzheimer’s and it’s the sixth leading cause of death in the U.S.

If my Grandma has Alzheimer’s, does that mean I will get it?
Not necessarily. While it’s true that those who have an immediate family member with Alzheimer’s are more likely to develop the disease, there are many factors that contribute to whether or not someone gets the disease. Even people with high risk of Alzheimer’s may never get the disease and conversely, people who have low risk may get the disease. Continue reading “Alzheimer’s basics: How to answer 5 common Alzheimer’s questions” »

New Alzheimer’s Association guidelines: How do physicians assess cognitive impairment?

doctorEffective January 1, 2011, the Affordable Care Act (the health care reform law) added a new Medicare benefit, the Annual Wellness Visit (AWV). The AWV is like a check-up or physical exam. Physicians are required to include assessment for cognitive impairment as part of the AWV.

Since as many as half of all Americans living with Alzheimer’s disease have not been diagnosed, the AWV cognitive assessment is a great opportunity to provide millions of people earlier detection of dementia, potentially earlier treatments, better healthcare management, access to services and the opportunity to make informed financial and care plans.

However, when the AWV benefit went into effect, there was no comprehensive guidance to physicians on how to accomplish cognitive assessment. To fulfill this need, the Alzheimer’s Association convened a group of experts who developed recommendations to primary care physicians on how to approach cognitive assessment during the AWV. The workgroup focused on tools that had the following characteristics: Continue reading “New Alzheimer’s Association guidelines: How do physicians assess cognitive impairment?” »

Think It Over…

While the Alzheimer’s Association is proud be to the largest private, non-profit funder of Alzheimer’s research, most basic science in the U.S. is funded through the National Institutes of Health.

Currently, the NIH funds about $6 billion in cancer science, $5 billion in heart disease research and a little over $3 billion in HIV/ Aids science. The Feds provide just under $500 million for Alzheimer’s research. I work for the Alzheimer’s Association and I have lost three family members to Alzheimer’s; I’m biased, but I think these numbers are out of whack.

It’s not that I begrudge these important public health issues a nickel. I’m delighted death rates from cancer, heart disease and HIV are bending downward. But $500 million for Alzheimer’s research just won’t alter the future fast enough for our children or grandchildren. This level of funding will assure that nearly half of today’s Boomers will spend the last years of their lives in the fog of Alzheimer’s.

I take this spending allocation as an expression of public focus. I ask myself, why this huge discrepancy? I think some of it is an unspoken cost-benefit analysis that says, “these people are about done anyway and society needn’t spend huge dollars on this cohort.” Many people still think of Alzheimer’s as normal aging and the medical community often doesn’t help. Over half of the more than 5 million Americans with Alzheimer’s will never be diagnosed. I frequently run into people who tell me that mom didn’t have Alzheimer’s, “she had dementia.” If you don’t think Mom had Alzheimer’s, are you going to care about Alzheimer’s research funding levels?

Some of the problem is stigma. It’s one thing to note that your backhand isn’t what it once was; it’s a very different thing to say you don’t think as well as you used to. We hum along on what is between our ears and when that is compromised, it has a whole different meaning to our future. It scares us, and it doesn’t help that there are no survivors showing up at Alzheimer’s fundraisers.

We must and will do better. It’s a matter of how fast we get to it. This Spring, the Association will mount a new public awareness campaign to help change the conversation. Let us know what you think and most importantly, share the message with your community.

Wm H. Fisher, wfisher@alz.org

Caregiver Survival Tips from Circle of Care

Elaine Sanchez speaks about caregiver survival at the Alzheimer’s Association 2012 Circle of Care conference

Sometimes caregivers feel like they are barely hanging in there! Author and caregiving guru Elaine Sanchez presented a few real world caregiver survival tips at our annual Circle of Care conference.

First, she advised adopting what she calls creative indifference, which is of not allowing yourself to become emotionally ravaged by the progression of the disease or events.

There are three basic steps to developing an attitude of creative indifference: Continue reading “Caregiver Survival Tips from Circle of Care” »

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