Care Giving Insight and Advice

"The ordinary arts we practice every day at home are of more importance to the soul than their simplicity might suggest." -- Thomas Moore.....

By Bob DeMarco

The Metamorphosis of This Alzheimer's Caregiver
The more I learned the more I wanted to know. I learned a great deal about Alzheimer's disease and dementia--including the science. It helped me understand a very mystifying disease. It helped me to put a frame around something that is difficult if not impossible to describe.

Communication in Alzheimer's World
Let's face it, dealing with dementia is not easy. Understanding Alzheimer's disease is not easy...

Alzheimer's World -- Two Circles Trying to Intersect
When Alzheimer's strikes communication and behavior change abruptly -- overnight. It is up to the caregiver to adjust since the person suffering from dementia is incapable of the adjustment. Understanding this need is the first big step.

Many Alzheimer's caregivers seek help in God

About a third of those who take care of loved ones with the disease feel 'more religious' because of their experiences, a new national study says.


You can read this article at The CareGiver Weblog

Exercise slows decline in Alzheimer's patients

I can attest, exercise makes a difference. My mother now has the tendency to sit around all day. On those days when I can get her to go to Gold's Gym with me she is a completely different person. The look on her face, from dull to smiling, is more than enough to tell me that exercise works to her benefit.

"Nursing home residents with Alzheimer's disease who participate in a moderate exercise program have a significantly slower deterioration than those who receive routine medical care, researchers have shown."

Read the article in its entirety at the CareGiver: The Book Weblog

New Drug Stops Alzheimer's In Tracks

The drug -- called Alzhemed -- attacks Amyloid Peptide - the molecule that causes Alzheimer's.

Paul Aisen, M.D.: "I think it is tremendously significant."

An early study showed Alzhemed stabilized the disease in nearly half of patients. Now, more than 1,000 are being followed.



Source ABC7


Nearly five-million Americans are living with Alzheimer's disease. Drugs on the market can treat the symptoms -- but not one goes after what causes it. Now, researchers are on the brink of a huge breakthrough with a drug that targets the cause and could stop the disease in its tracks.

Frances Goldstein: "I like to paint -- a lot."

Jacobo, her husband of 45 years, loves watching her mind at work. Frances has Alzheimer's disease -- diagnosed eight years ago at age 56.

Jacobo Goldstein, Wife has Alzheimer's: "For the first nine months, I couldn't tell her the word Alzheimer's because I was afraid, you know, that she might go into tremendous shock."

Instead, Frances fought back. For three years, she's been in a study testing a drug that could change her prognosis. Current Alzheimer's drugs target the symptoms of the disease...like memory loss and emotional problems. Well this new drug is taking a more direct approach.

Paul Aisen, M.D., Alzheimer's Specialist: "This drug is attacking the cause of Alzheimer's disease. If it works, it will change the course of the disease and that will represent a real breakthrough."

The drug -- called Alzhemed -- attacks Amyloid Peptide - the molecule that causes Alzheimer's. In mice, watch as the drug clears the molecule from the brain.

Paul Aisen, M.D.: "I think it is tremendously significant."

An early study showed Alzhemed stabilized the disease in nearly half of patients. Now, more than 1,000 are being followed.

Paul Aisen, M.D.: "If the phase three study confirms that the drug is effective, we will have a way of slowing the progression of Alzheimer's disease for the first time."

Frances takes Alzhemed twice a day.

Jacobo Goldstein: "I don't know where we would be if it wasn't for this. We have no idea. I know what she does now. If we can stay the way we are, we would be forever grateful."

With hope in hand, Frances continues to make every day and every painting count.

To date, more than 600 patients have completed one year of treatment on the medication. The study is scheduled to be complete soon. More than 70 centers across the United States and Canada are taking part. Side effects of the drug have been minimal and primarily include mild gastrointestinal symptoms.

Copyright 2007, ABC7/KGO-TV/DT.

Caring for the CareGivers

Group meetings help those coping with dementia in a loved one.



Caring for the Caregivers


By Elizabeth Cooney
TELEGRAM & GAZETTE
ecooney@telegram.com

WORCESTER— You came to the right place, the group told the silver-haired woman who had just joined them.

She took her seat on one of the 14 armchairs fanning out from the fireplace at Dodge Park Rest Home. Twice a month, people caring for loved ones with Alzheimer’s disease meet to share supper, stories, strategies and support. Across the hall, their relatives can have a meal and take part in an activity while the two-hour session unfolds.

The new arrival, who didn’t want her name used in the newspaper, told the group why she came.


“I don’t think I know how to handle the situation with dementia,” she said about her husband’s disease, diagnosed 10 years ago. “I lose my temper a lot and I get exasperated. I know I’m not handling things well, not for him and not for myself.”

Everyone in the room struggles with anger, frustration, fear and sorrow, said Deanne Weissflog, who was sitting next to her. While the men and women were all caring for relatives in different stages of dementia or Alzheimer’s, they all know the difficult road they are traveling.

And that includes Nafie Saba-Shapazian, executive director of Dodge Park and its Day Club, and Don Kemp, who helps her lead the sessions for caregivers.

Ms. Saba-Shapazian, a registered nurse, is responsible for Dodge Park’s 60 residents. Mr. Kemp, a rehabilitation counselor, took care of his father when he had Alzheimer’s.

They all know dementia and Alzheimer’s are insidious diseases, stealing up on people and their families. Only after the fact do bizarre behaviors and odd lapses make sense, sometimes after working lives and financial security are in a shambles. Alzheimer’s affects about 4.5 million Americans. There are some medications that stall the chronic, progressive disease, but there is no cure.

At the meeting, Betty Belevick read from an article in a business magazine about drugs in the pipeline. It might be too late for their loved ones in the grips of Alzheimer’s, but maybe it could help their children, Donna Haran said. There has been progress, not just in medications, Jeanette Rosa-Brady, support group coordinator of the Alzheimer’s Association’s Massachusetts chapter, said in an interview. She is not involved with the Dodge Park group.When she started training support group leaders in 1992, not as much was known about the disease, she said.

“People are able to access information much more readily now with the Internet,” she said. “That wasn’t there when I started. There weren’t medications to treat Alzheimer’s and there wasn’t a lot we knew from research about how to manage home safety or understand what someone with Alzheimer’s perceives.”

The Dodge Park group members talked about how to stay in the moment with the patients. For Ms. Haran, that meant not fighting with her husband when he headed for the snow blower at the first flake. Instead, she told him it was out of gas.

Distraction can work, as can humor.

The worst can be those moments of lucidity when Alzheimer’s patients recognize their plight.

Barbara Gould said her husband retired when he couldn’t face going to work once he knew he wasn’t doing it properly.

“All of a sudden he couldn’t count the money in his pocket,” she said. “That was humiliating for such a proud man. He was quick with numbers, like a calculator.”

One woman who, like many in the room, is caring for not one but two relatives — a parent and a spouse — with Alzheimer’s, said putting her husband in a nursing home was harder for her to get through than his death. Another woman said she had promised her aunt to keep her at home as long a she possibly could. Because her relatives disagree with her vow, she said, they don’t help her with the care.

Some of the people the caregivers spoke about were elderly, but some were just in their 50s when they began to fail. Many of the caregivers in the group are still working full time, fraying when demands tear them apart.

Russ Varney said he hasn’t taken a vacation in the three years since his mother became ill. He lives in Boston, works in Wellesley and takes care of his mother in Worcester. He’s exhausted pretty much all the time.

At 89, she is in perfect health — except for her dementia. She attends a day program most weekdays, as did other relatives of group members. He was cleaning her bathroom one recent weekend when he realized he couldn’t recall the last time he did the bathroom in his own house.

He recommended respite care, just to recharge.

That sounds good, but it’s not so easily done. First, the caregivers have to get over the guilt they feel when they turn their attention to themselves for a change, said Ms. Rosa-Brady of the Alzheimer’s Association. They feel guilt that they didn’t notice the disease sooner, or that they still enjoy things they used to do together, or that they get angry.

“People feel guilty that they are not doing a better job,” she said. “Any support group can dispel that right away. There’s no such thing as a perfect caregiver. You’re a human being.”

And human beings need rest. Ms. Saba-Shapazian tells them they can’t give good care if they don’t take care of themselves.

There’s even a study from the National Institutes of Health published in November that showed caregivers significantly improved their own quality of life and their loved ones’ when they were visited by people trained in stress management and problem-solving techniques and had support groups to call on.

While the Dodge Park group members talked about their trials, they never forgot the patients, saying how painful it must be for them, both in the early stages when they know they are declining and later when they are afraid and can’t be calmed.

Ms. Haran’s husband asked her one morning, when he didn’t know if he should get up, “What life is this, when I don’t know if it’s morning or night?”

Deanne’s mother was frightened, asking her, “What’s going to happen to me?”

Heads nodded as she said that.

“The strength from the people in this room is very encouraging,” Ms. Haran said.

Ms. Rosa-Brady said that’s the constant in support groups.

“You can read about Alzheimer’s on the Internet all you want. You will find information that is useful but all of us need to sit down and talk to other people who are doing the same thing you are,” she said. “You can read all you want, but that’s not going to dispel the feeling that you are the only person in the world this is happening to.”

That’s what the newcomer heard.

“It’s not easy being the ones who are left, trying to keep your head afloat. But here there’s camaraderie, compassion and understanding,” June Shack told her. “This is the right place to be.”

Comment on this story at www.telegram.com. Send an e-mail to Elizabeth Cooney at ecooney@telegram.com.






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New Gene Linked to Alzheimer's

"It fits into what we believe is the main mechanism of Alzheimer's already," Gandy said. "This reinforces the idea that we're on the right track with therapies already in the pipeline, while also suggesting a totally new strategy that could be used to target entirely new classes of drugs."

To read the article in its entirety go to the The Alzheimer's Reading Room.

The Alzheimer’s Reading Room

Everything Alzheimer's Disease. This weblog is for Alzheimer's CareGivers, those touched by Alzheimer's, and those interested in learning more about Alzheimer's disease. The content on this weblog is wide ranging and includes: research, definitions, education, important articles, clinical trials, and content from other CareGiver Weblogs.

To visit the weblog follow this line The Alzheimer’s Reading Room

Decoding Alzheimer's: After a century, promising treatments at last—and whispers of a cure

This is a fascinating article that discusses treatments for Alzheimer’s disease that are on the near term horizon.

"After a century, promising treatments at last—and whispers of a cure"

Read this article in its entirety at The Alzheimer’s Reading Room

Keeping Time with Alzheimer"s

This is an excellent article that can be read in its entirety at the Alzheimer's Reading Room.


"When guilt catches up with me, I am on the bike path above the creek, ducks swimming along beside me. Guilt rolls off our backs like you know what. Alone at last, I walk at my own pace. Fast. Fast is what Ben can no longer do -- and fast is slow compared with the woman coming toward me as I near the marsh. She is wearing shorts and earphones. She smiles and I smile back. What a good idea this is, walking out in the sun and cold. What could produce better clarity? I don't have to work it out the first day. I don't have to do it right the first time."