Grief ‘is the heaviest burden for carers of Alzheimer’s patients’ March 12, 2008

The hardest part of caring for loved ones with dementia is not the everyday practical challenge, but rather the emotional impact of losing the patients’ support and companionship as the disease robs them of their faculties, according to new research.

“You are losing and grieving while you’re providing the care, because Charlie isn’t Charlie anymore,” said Associate Professor Jacquelyn Frank from the University of Indianapolis, who led the research.

Professor Frank gathered responses from more than 400 dementia caregivers around Indiana, most of them spouses and adult children of Alzheimer’s patients.

They were asked: “What would you say is the biggest barrier you have faced as a caregiver?”

Though the respondents’ language varied, a computer analysis found that more than 80 per cent of them touched on a common theme: ‘letting go of the person we used to know,’ as one person wrote, or ‘watching your loved one slip away and forget who people are.’

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Tags: alzheimer’s, caregivers, grief, burden

Where are they? A caregiver’s thought. March 10, 2008

My mother has Alzheimer’s. I usually don’t question the “why,” but more of “how?” How did someone who taught children for 40 years, raise a family, a caretaker of her mother-in-law, she was a vibrant and diligent worker in her church, and would walk almost daily, become a victim to this crippling disease? My wife (who has been a source of comfort and strength) and I are the only ones caring for her.

My brother has called three times since Katrina destroyed her home in New Orleans. The odd thing is he has only asked about her health status once. Furthermore, I can’t comprehend why most of the people (family, friends and associates) she “loved and cared for” have become “ghosts!” I wonder, is it that difficult to call us and find out “how she’s doing” or to inquire “can they see her” or “can we help”? In my opinion, it’s neither of these.

I remember mother would care and share with at least one individual by either “praying for” or feeding someone a meal she prepared. Where are these people today? What prayers do they offer to the Lord on her behalf? What meals will they share? What thoughts, what memories? Does anyone have any compassion for someone that cared for them? Don’t get me wrong, besides her immediate family, there are very few calls for my mother? It’s strange, the ones that were with her more, are now less.

There has to be someone that remembers who she was and how she loved. Right? Maybe does anyone really care? Or, maybe they have forgotten how to care? Or, maybe they are afraid of what may hear and see? I am.

Every time I see her, I see just the shell of the person that once was…she was many joyful things. She was many loving things, happy things. Yes, it’s difficult to be a caregiver. In many ways, it’s difficult to handle theses circumstances. It’s not that she’s my “Mom”, but she was my best friend, motivator, cheerleader and teacher. After my father died, she listened to my cries, even though she suffered in great pain herself. I never heard her complain. She garnered the strength to carry on and help me through college. Emotionally, financially, but most of all spiritually. She demonstrated a faith that I never imagined was a part of her.

Jesus was alone at the end. We all will be alone at our respective “ends.” But there’s a difference in “being alone” and “being lonely.” We do everything we can do for her not to be the latter. I don’t know what else to say.

I love and thank my mother for who and why I am. I’m not perfect, neither is she. But she has a good heart and spirit. You can always build a good life on those foundations of life.

Early Onset Alzheimer’s On The Rise March 9, 2008

A Look At The Ten Percent Of Alzheimer’s Patients Who Face The Disease Before The Age Of 65

The number of Americans with Alzheimer’s is soaring. It’s expected to hit sixteen million by the middle of this century, more than triple the current total.More and more victims of this incurable disease will be shockingly young.CBS News correspondent Mark Strassmann visited one family coping with early-onset Alzheimer’s.For Bob Balfour, the scary reminder is every time … he just can’t remember.”I’ll go down into the basement to where my tools are, and I’ll forget what it is,” he told Strassmann.Bob has Alzheimer’s disease and while it’s usually thought of as disease of the elderly, that’s not necessarily so.

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from alzheimersgroup.word posted with vodpod

Etanercept drug reverses early symptoms of Alzheimer’s in 10 minutes March 9, 2008

Scientists in the U.S. say a drug which can reverse some of the early symptoms of Alzheimer’s disease takes effect within 10 minutes.

The scientists from the University of California at Los Angeles, and the University of Southern California, say the memory of an 81-year-old man improved dramatically after the drug etanercept, currently used to treat arthritis, was injected into his spine.

Some studies have suggested that too much of a body chemical called tumour necrosis factor-alpha may be at least partly to blame for the advance of the condition.

Etanercept, which is licensed for use as a rheumatoid arthritis drug, works to block this body chemical.

The study highlights the importance of certain soluble proteins, called cytokines, in Alzheimer’s disease and the cytokine, tumor necrosis factor-alpha (TNF), is a critical component of the brain’s immune system.

In normal circumstances TNF finely regulates the transmission of neural impulses in the brain and the researchers hypothesized that elevated levels of TNF in Alzheimer’s disease interfere with this regulation.

The theory was that an injection of etanercept would reduce the elevated levels of TNF.

The scientists Dr. Edward Tobinick and Dr. Hyman Gross have already published a study which suggested that this could benefit Alzheimer’s patients.

They had noticed in previous research that injecting the drug into the neck spine seemed to deliver almost immediate effects.

The decided to test the medication on just one patient, a former doctor who had the early stages of the disease.

Before the injection they measured his performance on cognitive tests, and found he performed poorly and was unable to remember the name of the doctor treating him, the date, or the state in which he lived. Neither could he perform simple mental arithmetic, or name more than two animals.

To the astonishment of his family ten minutes after a dose of etanercept, he was noticeably calmer, more attentive, and less frustrated; he also knew he lived in California, knew the day of the week, and the month, could name five animals, and performed better at the arithmetic test.

His wife said he was clearer and more organized and his son declared the change immediately after the drug was administered was the “single most remarkable thing he had ever seen.”

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Perispinal Etanercept: Potential as an Alzheimer therapeutic March 9, 2008

I recently viewed a video that an Alzheimer’s patient has made extraordinary improvements in his cognitive skills and gait. You can view the video on www.alzheimersgroup.org. I am posting information that I locate on the drug Etanercept:

Each of the three patients I saw treated had been tested and diagnosed with probable Alzheimer’s disease by a neurologist before perispinal etanercept treatment had begun. They and their families invited me to be present during the treatment and in the interviews before and after. I noticed clinical improvement in each of the three patients within minutes following treatment. My first impression was that there was a clear, easily discernible, difference in each. They were more cheerful, more at ease, and more attentive. My impressions were the same as those shared by each of the families (please see the movie for example). This rapid turn around brought to mind the first time, now almost two decades ago[17], that I was the original witness to the remarkable overexpression of immune cytokines in activated glia in Alzheimer patients and even in fetuses and neonates with Down’s syndrome – I was amazed!

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With Alzheimer’s, the Caregiver Is a Patient, Too March 8, 2008

I located this article which discusses the stress and depression that Alzheimer’s Caregivers can face.

Alzheimer’s Disease and other forms of dementia do not affect just the patient. These diseases gradually rob patients of memory and other intellectual abilities, leaving them unable to perform routine tasks. As the disease continues to destroy brain cells, patients increasingly depend on family members or others to carry out simple tasks like shopping and getting dressed. Ultimately, most patients will need complete care, adding to the caregiver’s burden.Alzheimer’s disease is the most common form of dementia, affecting up to 4 million Americans – and untold millions of family members and others who care for them. Physicians now recognize that Alzheimer’s caregivers themselves often require care and attention, says Diana R. Kerwin, MD, Medical College of Wisconsin Assistant Professor of Medicine in the Division of Geriatrics and Gerontology.

“What we’re seeing is that Alzheimer’s is not a typical disease model,” she says, “precisely because the health and well-being of the caretaker is affected as well as the patient. I know when I assume the care of an Alzheimer’s patient, I am also caring for the caregiver.”

Caregivers who accompany patients to the Froedtert Senior Health Program’s Geriatric Evaluation Clinic, where Dr. Kerwin practices, are screened for “caregiver stress” and see a gerontologic nurse and social worker who will answer their questions, provide information and help create a plan for care of the patient. Caregivers are given a kit with information about support groups and community services, including adult day care, home care agencies, assisted living, skilled nursing facilities and respite care.

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