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With Alzheimer’s, the Caregiver Is a Patient, Too


This is an interesting and thought provoking article that highlights the problems of Alzheimer’s caregivers.


With Alzheimer’s, the Caregiver Is a Patient, Too

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.

Stress, Depression Are Common
According to the Alzheimer’s Association, more than 80% of Alzheimer caregivers report that they frequently experience high levels of stress, and nearly half say they suffer from depression. It’s not difficult to see why.

The national Family Caregiver Alliance terms caregiver depression “one of today’s all-too-silent health crises.” The alliance estimates that caregiving spouses between the ages of 66 and 96 who are experiencing mental or emotional strain have a 63% higher risk of dying than people the same age who are not caregivers.

“Alzheimer’s causes progressive memory loss, and in the later stages patients can develop behavior problems,” Dr. Kerwin says. “It’s distressing for the caregiver to suddenly have to cope with their loved one’s anger, hallucinations, paranoia, aggression or inappropriate conduct in public. It’s upsetting when, as the disease progresses, the patient no longer recognizes the spouse or loved one.”

Caregivers often experience feelings of guilt, believing they are not doing enough to help, she adds. Spouses and adult children feel grief and loss, not unlike a death in the family – except that instead of being sudden, it’s spread out over years. Alzheimer’s is a progressively worsening disease, but the rate of progression from mild to advanced can vary widely, from three to 20 years. As Alzheimer’s progresses, the loss of brain function itself will cause death unless the patient has one or more other serious illness.

When the Child Becomes the Parent
For an adult child who cares for a parent with dementia, taking on the role of caregiver is a role reversal and takes some adjustment. “It can be a difficult transition for a child to take on the role of ‘parent’ and decision-maker,” Dr. Kerwin says. “The child often needs to be empowered to step in and begin caring for their ailing parent – making sure their parent takes his or her medication, for instance, or telling their parent they should not drive, and making difficult decisions about when the parent is no longer able to safely live alone.”

Those caregivers are often already juggling multiple responsibilities with their own spouses, children and careers. In some cases, adult-child caregivers with siblings feel resentful if they must bear the brunt of their parent’s care, Dr. Kerwin says. If the adult-child caregiver is the only sibling living in the same city as the parent he or she often feels isolated, overwhelmed and underappreciated.

And sometimes, whether the caregiver is a spouse or an adult sibling, out-of-town siblings or other family members who see the parent infrequently may think the caregiver is exaggerating the extent of the Alzheimer’s patient’s decline. The out-of-town family members may feel guilty about not being able to help from a distance, and when they do visit, they may criticize or ask to change the care their parent is receiving.

Caregivers are often fatigued from carrying out their new responsibilities, Dr. Kerwin says. “I see them neglecting their own health. It’s not unusual for caregivers to suffer not only depression but also higher levels of hypertension. We recommend they have annual physicals, during which they should be sure to tell their primary care physician that they are caregivers. We also recommend they participate in support groups and learn about the community resources available.”

Other concerns caregivers regularly express are loss of concentration due to their caregiving responsibilities and fear that they themselves might eventually get the disease.

Warning Signs for Caregivers What are some warning signs of caregiver stress? According to the Alzheimer’s Association, they include:

Anger
Anxiety
Denial
Depression
Exhaustion
Health problems
Irritability
Lack of concentration
Sleeplessness
Social withdrawal
Caregivers who regularly experience these conditions should seek help from their physician, says the Alzheimer’s Association.

Financial Strain Heightens Burden
In some families, the presence of Alzheimer’s disease also brings financial problems that can add to stress and depression. Caregivers sometimes give up paying jobs for the unpaid one of caring for a loved one. They often find additional responsibilities are thrust on them, such as overseeing medications for their patient, knowing if or when the patient’s care should be transferred to a nursing home, and taking on power of attorney duties along with living wills and advanced directives that specify whether terminal patients should undergo extreme measures to keep them alive.

The national Family Caregiver Alliance estimates that approximately 80% of the long-term care in the United States is provided without compensation, sometimes around the clock.

“The responsibilities are vast,” Dr. Kerwin notes. “It’s important for caregivers to regularly take some time for themselves, away from their caring responsibilities.”

Barbara Abel
HealthLink Contributing Writer

The Medical College’s Center for Healthy Communities, along with the local non-profit organization Community Care for the Elderly Partnership, has developed a Caring for Caregivers Program to support Medicaid- and Medicare-eligible residents in the community who care for frail relatives, often those with dementia. For more information, contact Tovah H. Bates, PhD, Assistant Professor, Family & Community Medicine, at 414-456-4305, or Community Care for the Elderly at 414-385-6600.

For more information on this topic, see the HealthLink articles End-Stage Alzheimer’s – the Long Goodbye and Current Research on Alzheimer’s, Memory Loss, and Aging.

 

Book Review: The 36-Hour Day

The 36-Hour Day: A Family Guide to Caring for People with Alzheimer Disease and Memory Loss in Later Life

This best-selling book is the “bible” for families caring for people with Alzheimer disease…offering comfort and support to millions worldwide. In addition to the practical and compassionate guidance that have made The 36-Hour Day invaluable to caregivers, the fourth edition is the only edition currently available that includes new information on medical research and the delivery of care.

The new edition includes:

new information on diagnostic evaluation-resources for families and adult children who care for people with dementia-updated legal and financial information-the latest information on nursing homes and other communal living arrangements-new information on research, medications, and the biological causes and effects of dementia.


Tami Greene said…

This book has been the single most helpful tool my family has been given to help us help my mother as she progresses with Alzheimer’s Disease. While other books have touched on many of the topics in this book, no where else have we found as much practical information on how to avoid confrontations with her; ways to improve her daily living; ideas to keep her involved with us and to provide meaning to her life; questions to ask her doctors; types of resources that are available (depending on your area); what to expect as the disease progresses; and how to help each other as we take on the many different roles needed to provide care for her.

I highly recommend this book to others; in fact, I have purchased multiple copies to share with family members and donate to my local library – that’s how helpful and important this book is!

Arthur Jones said…

This is a excellent book and reference for those learning to deal with Alzheimer. Plenty of resources and ideas of what to look for when caring for someone with this disease. You can get a good idea of what to expect and how to help those suffering with this devastating disease. Easy to understand and read. Can’t recommend this book enough.

 

Alzheimer’s and Brain Fitness

I mentioned before that daily exercise has a dramatic effect on the quality of my mother’s daily life. I first started taking her to Gold’s Gym about three years ago. I did this after reading about the potential benefits of exercise for Alzheimer’s patients. I feel confident in saying that exercise has had a dramatic positive effect on her daily life, and that exercise is a critical component in staving-off the horrid effects of Alzheimer’s disease.

A growing body of research indicates that regular aerobic exercise can boost your brain’s memory and cognitive processing speed by stimulating a process called neurogenesis (the creation of new neurons in the brain). I am including two articles that I believe you will find of interest.

That is 91 year old mom in the picture. She is pictured here riding a bicycle at Gold’s Gym in Delray Beach, Florida.

Lobes of Steel
The New York Times
By GRETCHEN REYNOLDS

The Morris water maze is the rodent equivalent of an I.Q. test: mice are placed in a tank filled with water dyed an opaque color. Beneath a small area of the surface is a platform, which the mice can’t see. Despite what you’ve heard about rodents and sinking ships, mice hate water; those that blunder upon the platform climb onto it immediately. Scientists have long agreed that a mouse’s spatial memory can be inferred by how quickly the animal finds its way in subsequent dunkings. A “smart” mouse remembers the platform and swims right to it.

In the late 1990s, one group of mice at the Salk Institute for Biological Studies, near San Diego, blew away the others in the Morris maze. The difference between the smart mice and those that floundered? Exercise. The brainy mice had running wheels in their cages, and the others didn’t.

Scientists have suspected for decades that exercise, particularly regular aerobic exercise, can affect the brain. But they could only speculate as to how. Now an expanding body of research shows that exercise can improve the performance of the brain by boosting memory and cognitive processing speed. Exercise can, in fact, create a stronger, faster brain.

This theory emerged from those mouse studies at the Salk Institute. After conducting maze tests, the neuroscientist Fred H. Gage and his colleagues examined brain samples from the mice. Conventional wisdom had long held that animal (and human) brains weren’t malleable: after a brief window early in life, the brain could no longer grow or renew itself. The supply of neurons — the brain cells that enable us to think — was believed to be fixed almost from birth. As the cells died through aging, mental function declined. The damage couldn’t be staved off or repaired.

Gage’s mice proved otherwise. Before being euthanized, the animals had been injected with a chemical compound that incorporates itself into actively dividing cells. During autopsy, those cells could be identified by using a dye. Gage and his team presumed they wouldn’t find such cells in the mice’s brain tissue, but to their astonishment, they did. Up until the point of death, the mice were creating fresh neurons. Their brains were regenerating themselves.

All of the mice showed this vivid proof of what’s known as “neurogenesis,” or the creation of new neurons. But the brains of the athletic mice in particular showed many more. These mice, the ones that scampered on running wheels, were producing two to three times as many new neurons as the mice that didn’t exercise.

But did neurogenesis also happen in the human brain? To find out, Gage and his colleagues had obtained brain tissue from deceased cancer patients who had donated their bodies to research. While still living, these people were injected with the same type of compound used on Gage’s mice. (Pathologists were hoping to learn more about how quickly the patients’ tumor cells were growing.) When Gage dyed their brain samples, he again saw new neurons. Like the mice, the humans showed evidence of neurogenesis.

Gage’s discovery hit the world of neurological research like a thunderclap. Since then, scientists have been finding more evidence that the human brain is not only capable of renewing itself but that exercise speeds the process.

“We’ve always known that our brains control our behavior,” Gage says, “but not that our behavior could control and change the structure of our brains.”

The human brain is extremely difficult to study, especially when a person is still alive. Without euthanizing their subjects, the closest that researchers can get to seeing what goes on in there is through a functional M.R.I. machine, which measures the size and shape of the brain and, unlike a standard M.R.I. machine, tracks blood flow and electrical activity.

This spring, neuroscientists at Columbia University in New York City published a study in which a group of men and women, ranging in age from 21 to 45, began working out for one hour four times a week. After 12 weeks, the test subjects, predictably, became more fit. Their VO2 max, the standard measure of how much oxygen a person takes in while exercising, rose significantly.

But something else happened as a result of all those workouts: blood flowed at a much higher volume to a part of the brain responsible for neurogenesis. Functional M.R.I.’s showed that a portion of each person’s hippocampus received almost twice the blood volume as it did before. Scientists suspect that the blood pumping into that part of the brain was helping to produce fresh neurons.

The hippocampus plays a large role in how mammals create and process memories; it also plays a role in cognition. If your hippocampus is damaged, you most likely have trouble learning facts and forming new memories. Age plays a factor, too. As you get older, your brain gets smaller, and one of the areas most prone to this shrinkage is the hippocampus. (This can start depressingly early, in your 30’s.) Many neurologists believe that the loss of neurons in the hippocampus may be a primary cause of the cognitive decay associated with aging. A number of studies have shown that people with Alzheimer’s and other forms of dementia tend to have smaller-than-normal hippocampi.

The Columbia study suggests that shrinkage to parts of the hippocampus can be slowed via exercise. The subjects showed significant improvements in memory, as measured by a word-recall test. Those with the biggest increases in VO2 max had the best scores of all.

“It’s reasonable to infer, though we’re not yet certain, that neurogenesis was happening in the people’s hippocampi,” says Scott A. Small, an associate professor of neurology at Columbia and the senior author of the study, “and that working out was driving the neurogenesis.”

Other recent studies support this theory. At the University of Illinois at Urbana- Champaign, a group of elderly sedentary people were assigned to either an aerobic exercise program or a regimen of stretching. (The aerobic group walked for at least one hour three times a week.) After six months, their brains were scanned using an M.R.I. Those who had been doing aerobic exercise showed significant growth in several areas of the brain. These results raise the hope that the human brain has the capacity not only to produce new cells but also to add new blood vessels and strengthen neural connections, allowing young neurons to integrate themselves into the wider neural network. “The current findings are the first, to our knowledge, to confirm the benefits of exercise training on brain volume in aging humans,” the authors concluded.

And the benefits aren’t limited to adults. Other University of Illinois scientists have studied school-age children and found that those who have a higher level of aerobic fitness processed information more efficiently; they were quicker on a battery of computerized flashcard tests. The researchers also found that higher levels of aerobic fitness corresponded to better standardized test scores among a set of Illinois public school students. The scientists next plan to study how students’ scores change as their fitness improves.

What is it about exercise that prompts the brain to remake itself? Different scientists have pet theories. One popular hypothesis credits insulin-like growth factor 1, a protein that circulates in the blood and is produced in greater amounts in response to exercise. IGF-1 has trouble entering the brain — it stops at what’s called the “blood-brain barrier” — but exercise is thought to help it to do so, possibly sparking neurogenesis.

Other researchers are looking at the role of serotonin, a hormone that influences mood. Exercise speeds the brain’s production of serotonin, which could, in turn, prompt new neurons to grow. Abnormally low levels of serotonin have been associated with clinical depression, as has a strikingly shrunken hippocampus. Many antidepressant medications, like Prozac, increase the effectiveness of serotonin. Interestingly, these drugs take three to four weeks to begin working — about the same time required for new neurons to form and mature. Part of the reason these drugs are effective, then, could be that they’re increasing neurogenesis. “Just as exercise does,”Gage says.

Gage, by the way, exercises just about every day, as do most colleagues in his field. Scott Small at Columbia, for instance , likes nothing better than a strenuous game of tennis. “As a neurologist,” he explains, “I constantly get asked at cocktail parties what someone can do to protect their mental functioning. I tell them, ‘Put down that glass and go for a run.’ ” .

This Is Your Brain on Something Other Than Exercise

The human brain undergoes neurogenesis — the creation of new cells — throughout a person’s life, although the amount depends on a variety of factors, not just exercise.

Researchers ID Brain Network That May Help Prevent or Slow Alzheimer’s Disease

These highlighted spots of activity represent a brain network. People with more cognitive reserve may use such networks more efficiently or use alternative networks to deal with Alzheimer’s pathology. These highlighted spots of activity represent a brain network.

Columbia University researchers have uncovered some clues about why “mental exercise” appears to provide protection against Alzheimer’s disease and dementia.

A team from Columbia University Medical Center (CUMC) identified a brain network within the frontal lobe associated with cognitive reserve, the process that allows individuals to maintain function despite mental decline due to aging or Alzheimer’s disease.

The finding may illuminate how higher levels of cognitive reserve – thought to replenish by regular engagement in mentally stimulating activities such as taking classes, gardening and volunteering – provide such protection. Researchers hope the results of the study lead to advancements to prevent or delay the onset of Alzheimer’s disease or other age-related memory conditions. The study, published in the current issue of Cerebral Cortex, was led by Yaakov Stern, a professor at the Taub Institute for the Research on Alzheimer’s Disease and the Aging Brain and director of the Cognitive Neuroscience Division of the Gertrude H. Sergievsky Center at CUMC.

To obtain the data, researchers gave participants, categorized as young (between 18 and 30 years old) and elderly (between 65 and 80 years old), one of two different memory tasks, one involving a series of letters and a second involving a series of nonsensical shapes. Individuals completed the tasks while undergoing functional magnetic resonance imaging (fMRI).

Researchers designed the activities with increasing difficulty to allow observation of the participants’ brain activation, as the tasks got progressively harder. Findings demonstrated that individuals with higher levels of cognitive reserve were able to activate this network in the brain while working on more difficult tasks, while participants with lower levels of reserve were not able to tap into this particular network.

Related links

Interview With Dr. Stern: Complex Brain Circuits May Protect Against Alzheimer’s, In Vivo, Dec. 14, 2005

Related research by Professor Stern:

The Concept of Cognitive Reserve: A Catalyst for Research

“With the identification of this brain network – located within the frontal lobe – that is active during the performance both of these verbal and spatial tasks and probably other types of tasks as well, we believe we have accomplished an important first step towards improving our understanding of how cognitive reserve is expressed within the brain,” said Stern, a professor of clinical neuropsychology in the Departments of Neurology, Psychiatry and Psychology at the Columbia University College of Physicians and Surgeons.

“The network was found more often in younger participants, signifying that the network may degrade during the natural aging process,” said Stern. “If this degradation process can be slowed or halted, it may benefit the millions of people living with devastating memory decline.”

 

Caregiver Resources


The list on the follow page is a comprehensive list of caregiver resources. It is well worth copying for future reference.

AARP: This organization supplies information about caregiving, long-term care and aging, including publications and audiovisual aids for caregivers. The free online seminar Planning for the Care of Aging Parents is just one example of the educational resources provided.
(800) 424-2277

Alzheimer’s Association 24/7 Helpline: Referral and support.
(800) 272-3900

Benefits CheckUp: This Web site, operated by the National Council on the Aging, identifies federal and state assistance programs for older Americans in each community.

Caregivers Marketplace: A free service for family caregivers that offers savings and education on a wide range of goods and services for anyone who “gives, gets or needs care.”
(866) 327-8340

Caregiving Online: The site pulls together other sites that offer information on maintaining caregiver health

Caregiver Survival Resources: The site aims to help others cope with the demands of caregiving.

Centers for Medicare & Medicaid Services: The official U.S. government site for people on Medicare.

Children of Aging Parents: A nonprofit, charitable organization whose mission is to assist the nation’s nearly 54 million caregivers of the elderly or chronically ill with reliable information, referrals and support, and to heighten public awareness that the health of family caregivers is essential to ensure quality care of the nation’s growing elderly population.
(215) 945-6900 or (800) 227-7294

ElderCare Online: An online community designed to provide comprehensive information and support for those caring for aging loved ones, especially those coping with Alzheimer’s.

Eldercare Locator: A national directory of community services.
http://www.eldercare.gov/eldercare/public/home.asp
(800) 677-1116

Family Caregiver Alliance: Tracks action on key legislative issues of concern to family caregivers and offers advice on how to get involved in advocacy efforts.
(415) 434-3388

Family Caregiving Guides and Directories: A Department of Health and Human Services directory of Web sites for caregivers.

First Gov for Seniors: A Web site maintained by the Social Security Administration to provide an up-to-date overview of health, wellness and financial issues of interest to older persons and their families.

Healthy Caregiver: A magazine and online community dedicated to the issues and interests of contemporary adults caring for aging parents.

HomeCare Online: The National Association for Home Care’s virtual headquarters. NAHC is committed to representing the interests of the home care and hospice community.


Hospice Net
: Organization provides information and support to patients and families facing life-threatening illnesses. Hospice Net is an independent, nonprofit 501(c)(3) organization working exclusively through the Internet.

National Alliance for Caregiving: The NAC is dedicated to providing support to family caregivers of older persons and the professionals who help them and to increase public awareness of issues facing family caregiving.

National Association of Professional Geriatric Care Managers: Care managers are professionals who coordinate caregiving services. They can be helpful when family members are not able to play an active role.
(520) 881-8008

National Family Caregivers Association: NFCA is dedicated to making life better for all of America’s family caregivers. Family caregivers focus on their loved ones’ needs; NFCA focuses on family caregivers.

National Hospice and Palliative Care Organization: The largest nonprofit membership organization representing hospice and palliative care programs and professionals in the United States. The organization is committed to improving end-of-life care and expanding access to hospice care with the goal of profoundly enhancing quality of life for the dying and their loved ones.
(800) 658-8898

Today’s Caregiver magazine: A print and Web magazine dedicated to those caring for loved ones, written for caregivers by caregivers and dealing with topics like stress and depression management, financial, legal and medical advice, housing and incontinence.

U.S. Administration on Aging: The federal agency that develops programs and information resources for the elderly and their families.

Family Caregivers Online Newsletter: Online educational resource with practical information for family caregivers.

——————————————————————————–
Leah Dobkin is a freelance writer based in Shorewood, Wisconsin. She has more than 30 years’ experience working in the field of aging. She has prepared educational materials and articles for family caregivers, businesses and nonprofit organizations on this subject, has spoken at conferences and has conducted training for employees, employers and community service providers throughout the U.S. E-mail editors@workforce.com to comment.

“caregiver resources”, “robert t demarco”, alzheimer’s, blog, caregiver, caregiver resources, dementia, elder-care, family caregiving

 

‘Instant’ Alzheimer’s Drug Claim, Enbrel (Etanercept)


Ten minutes after the injection, the researchers reported that the patient was calmer, less frustrated and more attentive. He could correctly identify California as his home state, but incorrectly identified the current year. At two hours, the Montreal Cognitive Assessment had improved from seven out of a possible 30 to 15. The man’s wife and son confirmed the improvements.

‘Instant’ Alzheimer’s Drug Claim

A drug used for arthritis can reverse the symptoms of Alzheimer’s ‘in minutes'”, the Daily Mail reported. Several newspapers covered the story of how an 81-year-old man with Alzheimer’s disease improved within 10 minutes of being injected with a new drug, etanercept. The BBC reported that his wife described the effect on her husband as being “put back to where he was”. His son said, “This was the single most remarkable thing I’ve seen”.

Reports of success in single patients often herald the start of a new line of investigation into diseases and drugs. Though anecdotal evidence holds promise for patients, families and researchers, most of the news reports suggest that it is too soon to say if this drug will fulfil its potential. Larger, placebo controlled studies will be required to determine if this drug is safe or effective for this disease. The drug has the advantage that it has already been approved as safe for use in humans for treating arthritis, and this could speed up the process of testing its effectiveness in treating Alzheimer’s.

Where did the story come from?

Dr Edward Tobnick from the Institute of Neurological Research and Dr Hyman Gross from the USC School of Medicine in Los Angeles carried out this research. The institute is a private medical group and there was no funding from outside sources. Competing interests were declared.

The study was published online in the Journal of Neuroinflammation.

What kind of scientific study was this?

This was a case study (a study in one person) that tested the short-term effects of the drug etanercept on a patient with Alzheimer’s disease.

The researchers first obtained the written consent of the patient and his wife and explained the potential risks of the drug, which included infection and death. They then conducted a routine examination of the 81-year-old retired doctor followed by a range of tests for memory, attention and mathematical ability. The Montreal Cognitive Assessment (which assesses mild cognitive dysfunction) was used to give a numerical score for the degree of dementia. Prior to the injection the score was seven out of a possible 30 points, a number consistent with moderate to severe dementia.

The drug was then injected around the spinal cord at neck level, and the patient was placed with his head downwards, so that the drug would run to the head. The patient was re-examined after a 10 minute and two hour interval.

The drug etanercept belongs to a class of drugs called TNF-alpha blockers. These are increasingly used for the treatment of severe rheumatoid arthritis and other conditions caused by inflammation. This type of drug is usually administered by injection into muscle. It acts by deactivating a chemical involved in the early stages of generalised inflammation and in regulating immune cells – tumour necrosis factor (TNF). The researchers had already conducted a study that measured the drug’s longer-term effects in 15 patients over a six month period and this study was aimed at assessing the rapid effects of the drug.

What were the results of the study?

Ten minutes after the injection, the researchers reported that the patient was calmer, less frustrated and more attentive. He could correctly identify California as his home state, but incorrectly identified the current year. At two hours, the Montreal Cognitive Assessment had improved from seven out of a possible 30 to 15. The man’s wife and son confirmed the improvements.

What interpretations did the researchers draw from these results?

In their discussion of the results, the researchers describe the biological mechanisms providing the rationale for trying out this drug. They suggest it is a promising area for additional investigation and therapeutic intervention.

What does the NHS Knowledge Service make of this study?

As a case report of a single patient, this study represents very early evidence in the long journey from drug development to clinical use in patients. Disadvantages to this type of study include:

– the lack of any control patients against which the effect can be compared, meaning that it may be that some of the improvements, for example the lessened anxiety, could have occurred by sitting in the doctors office for long enough without being given any medication
– the lack of long term follow up means that it is not possible to know how long any suggested improvement may last
– the lack of results from other patients mean the effect may not be seen in other people

The drug has an advantage in that it is already approved for use in other conditions and therefore something is already known of its safety. The long and short term effects of drugs can be markedly different and this study may stimulate further research into the short term effects of etanercept for dementia.

While providing hope for those who suffer from Alzheimer’s and their families, this case study should be regarded as a preliminary finding of this drug’s use as a treatment for the disease. Further controlled studies of the drug’s effects in a larger group of people would be required to test the drug’s effectiveness properly.

Links to the science

Tobinick EL, Gross H. Rapid cognitive improvement in Alzheimer’s disease following perispinal etanercept administration.J Neuroinflammation 2008; 5:2

This news comes from the National Health Service (NHS) of the UK.
http://www.nhs.uk/News/Pages/NewsIndex.aspx

Article URL: http://www.medicalnewstoday.com/articles/94072.php

Main News Category: Alzheimer’s / Dementia

 

The Validation Breakthrough: Simple Techniques for Communicating with People with Alzheimer’s Type Dementia

You might get the impression from the title that this book is only for professionals; this is not the case. The validation theory works and it is simple to apply. The case studies are invaluable and provide you with specific situations that you are sure to encounter. I am convinced everyone involved with elderly parents suffering from dementia or Alzheimer’s will benefit from by reading and utilizing this book.

This book contains valuable techniques that are designed to help you communicate more effectively with your loved one. Once perfected you will be able to put away those feelings of frustration and helplessness. Importantly, the learned techniques will help you reduce stress.

I give The Validation Breakthrough five stars and it is on my must read list.

The Validation Breakthrough: Simple Techniques for Communicating with People with Alzheimer’s Type Dementia

Please take a moment to read the reviews on the next page.

Buyer Reviews

By Martine Davis

If you live with or care for someone with Alzheimer’s or other age related dementia, you must read this book ! What an eye-opener! For the first time I finally understood why Alzheimer’s patient say what they say and do what they do. It all makes so much sense now. This small book reads quickly and is full of examples of real people who have been helped with the author’s techniques. It shows you how to handle the blaming, accusing, name-calling and the repetitive motions … It also explains why the way most of us react to Alzheimer’s patients actions actually worsens the situation and can cause them to progress to a more advanced stage of Alzheimer’s disease ! This book could extend the relationship between the patient and caregivers and should be MANDATORY reading for all staff working in nursing homes and long-term care facilities !

By J. Summers, CNA (Alaska)

An excellent book for both the professional caregiver and families trying to deal with this sometimes unfathomable disease. Gives practical ideas and techniques for helping people with dementia deal with issues from paranoia and blaming to sadness and helplessness. I have just begun to explore these techniques and am finding they work so well that they should be mandatory training for nurses, PCAs and CNAs. Instead of treating our seniors like they are children we at last have a way to talk to them on an adult level, tap into where they are at, deal with the problem at hand and we all come out better for the experience.

Reviewer: A reader

More and more relevant as we care for aging parents. With a title like this one might think: “Boring” Absolutely not so! Right from the start, the stories of the people are so real and so touching that one of my friends said she was moved to tears. She was so sad not to have known about this way of relating to her father. “It works,” she told me. “Validation Breakthrough” shows a new way of relating to people with dementia of Alzheimer’s type. This approach is effective in helping the person to clear up unresolved issues in their lives. You do not have to be a professionally trained therapist to use validation. Validation will make the relationship more rewarding for both people. It is not hard to learn and makes wonderful sense. Some readers may want to ask new questions of care facilities (like nursing homes) as the validation approach will keep loved ones from slipping into a vegetative state. It will also make the care much kinder, and more rewarding for the care givers

The Validation Breakthrough: Simple Techniques for Communicating with People with ‘Alzheimer’s-Type Dementia’

 

I Missed the Early Signs of Dementia in my Mother

Looking back, there is little doubt in my mind I should have realized my mother was suffering from dementia sooner. Sadly, I didn’t have the proper education, information, or frame of reference. Most people tend to ignore the early symptoms of the disease believing they are simply signs of “old age”. Anyone who ends up in my shoes knows and understands that a person in the early stages of Alzheimer’s can function normally–even drive a car. Only when they deteriorate or some “event” takes place do we wake up to reality.

Behavior changes slowly in the elderly and as they begin to suffer cognitive impairment these changes are hard to detect. Sometimes these changes can be quite subtle but if detected raise a “red flag”.

If my mother had been enrolled in any of the studies listed below, I feel certain she would have been diagnosed sooner. This would have allowed me to get her in an exercise program, get her proper nutrition, and insured that she was taking her medication as prescribed. I learned in the last four years how important these factors are in the quality of her life.

The woman in the picture is my 91 year old mother (yes the picture is current). She suffers from Alzheimer’s disease. I am her CareGiver.

Sensors could help catch first signs of dementia
Monitors and online tests track subtle changes in daily mobility, behavior

Source Associated Press and MSNBC

WASHINGTON – Tiny motion sensors are attached to the walls, doorways and even the refrigerator of Elaine Bloomquist’s home, tracking the seemingly healthy 86-year-old’s daily activity.

It’s like spying in the name of science — with her permission — to see if round-the-clock tracking of elderly people’s movements can provide early clues of impending Alzheimer’s disease.

“Now it takes years to determine if someone’s developing dementia,” laments Dr. Jeffrey Kaye of Oregon Health & Science University, which is placing the monitors in 300 homes of Portland-area octogenarians as part of a $7 million federally funded project.

The goal: Shave off that time by spotting subtle changes in mobility and behavior that Alzheimer’s specialists are convinced precede the disease’s telltale memory loss.

Simple early signs

Early predictors may be as simple as variations in speed while people walk their hallways, or getting slower at dressing or typing. Also under study are in-home interactive “kiosks” that administer monthly memory and cognition tests, computer keyboards bugged to track typing speed, and pill boxes that record when seniors forget to take their medicines.

More than 5 million Americans, and 26 million people worldwide, have Alzheimer’s, and cases are projected to skyrocket as the population ages. Today’s medications only temporarily alleviate symptoms. Researchers are desperately hunting new ones that might at least slow the relentless brain decay if taken very early in the disease, before serious memory problems become obvious.

So dozens of early diagnosis methods also are under study, from tests of blood and spinal fluid to MRI scans of people’s brains. Even if some pan out, they’re expensive tests that would require lots of doctor intervention, when getting someone to visit a physician for suspicion of dementia is a huge hurdle. And during routine checkups, even doctors easily can miss the signs.

Bloomquist, of Milwaukie, Ore., knows the conundrum all too well. She volunteered for Kaye’s research because her husband died of Alzheimer’s, as did his parents and her own mother.

“It’s hard to know when people begin Alzheimer’s,” she reflects. “Alzheimer people do very well socially for short periods of time. If it’s just a casual conversation, they rise to the occasion.”

‘Typical’ days monitored

Measuring how people fare at home — on bad days as well as good ones, not just when they’re doing their best for the doctor — may spot changes that signal someone’s at high risk long before they’re actually demented, Kaye told the Alzheimer’s Association’s international dementia-prevention meeting last week.

“If you only assess them every once-in-a-blue-moon, you really are at a loss to know what they are like on a typical day,” Kaye explains.

High-tech monitors under study:

Researchers at New York’s Mount Sinai School of Medicine are heading a study that ultimately plans to recruit 600 people over age 75 to help test in-home “kiosks” that turn on automatically to administer monthly cognitive exams. A video of a smiling scientist appears on-screen to talk participants through such classic tests as reading a string of words and then, minutes later, repeating how many they recall, or seeing how quickly they complete connect-the-dot patterns.
An Oregon pilot study of the motion sensors tracked 14 participants in their upper 80s for almost a year. Half had “mild cognitive impairment,” an Alzheimer’s precursor, and half were healthy. Impaired participants showed much greater variation in such day-to-day activities as walking speed, especially in the afternoons.

Why? The theory is that as Alzheimer’s begins destroying brain cells, signals to nerves may become inconsistent — like static on a radio — well before memories become irretrievable. One day, signals to walk fire fine. The next, those signals are fuzzy and people hesitate, creating wildly varying activity patterns.

Study receives unique grant

The pilot study prompted a first-of-its-kind grant from the National Institutes of Health to extend the monitoring study to 300 homes; 112 are being monitored already, mostly in retirement communities like Bloomquist’s. They’re given weekly health questionnaires to make sure an injury or other illness that affects activity doesn’t skew the results.

In addition, participants receive computer training so they can play brain-targeted computer games and take online memory and cognition tests. The keyboards are rigged to let researchers track changes in typing speed and Internet use that could indicate confusion.

Finally, a souped-up pill dispenser called the MedTracker is added to some of the studies, wirelessly recording when drugs are forgotten or taken late.
Electronics giants already sell various medical warning technologies for the elderly, including dementia patients, such as pill boxes that sound reminder alarms at dose time. And the Alzheimer’s Association and Intel Corp. are jointly funding research into how to use television, cell phones and other everyday technology to do such things as guide dementia patients through daily activities.

The next step of companies selling early symptom monitoring isn’t far off, and unbiased data on what really helps will be crucial, Kaye warns.

 

Dementia Factsheet (Alzheimer’s Disease)


I ran across this factsheet from the Milton S Hershey Medical Center. The section entitled,What are the Symptoms, is particularly interesting.

Source Milton S Hershey Medical Center

Dementia

What is it?

Dementia is the gradual deterioration of mental functioning, such as concentration, memory, and judgment, which affects a person’s ability to perform normal daily activities.

Who gets it?

Dementia occurs primarily in people who are over the age of 65, or in those with an injury or disease that affects brain function. While dementia is most commonly seen in the elderly, it is not a normal consequence of the aging process.

What causes it?

Dementia is caused by the death of brain cells. Brain cells can be destroyed by brain diseases, such as Alzheimer’s disease, or strokes (called vascular or multi-infarct dementia), which decrease blood flow to the brain. Lewy body dementia is another common cause attributed to changes in brain tissue. Other causes can include AIDS, high fever, dehydration, hydrocephalus, systemic lupus erythematosus, Lyme disease, long-term drug or alcohol abuse, vitamin deficiencies/poor nutrition, hypothyroidism or hypercalcemia, multiple sclerosis, brain tumor, or diseases such as Pick’s, Parkinson’s, Creutzfeldt-Jakob, or Huntington’s. Dementia can also result from a head injury that causes hemorrhaging in the brain or a reaction to a medication.

What are the symptoms?

In most cases, the symptoms of dementia occur gradually, over a period of years. Symptoms of dementia caused by injury or stroke occur more abruptly. Difficulties often begin with memory, progressing from simple forgetfulness to the inability to remember directions, recent events, and familiar faces and names. Other symptoms include difficulty with spoken communication, personality changes, problems with abstract thinking, poor personal hygiene, trouble sleeping, and poor judgment and decision making. Dementia is extremely frustrating for the patient, especially in the early stages when he or she is aware of the deficiencies it causes. People with dementia are likely to lash out at those around them, either out of frustration or because their difficulty with understanding makes them misinterpret the actions of others. They become extremely confused and anxious when in unfamiliar surroundings or with any change in routine. They may begin a task, such as cooking, then wander away aimlessly and completely forget what they had been doing. Dementia is often accompanied by depression and delirium, which is characterized by an inability to pay attention, fluctuating consciousness, hallucinations, paranoia, and delusions. People in advanced stages of dementia lose all control of bodily functions and are completely dependent upon others.

How is it diagnosed?

Dementia is diagnosed through a study of the patient’s medical history and a complete physical and neurological exam. The doctor will speak with those close to the patient to document a pattern of behavior. He or she will also evaluate the patient’s mental functioning with tests of mental status, such as those that require the patient to recall words, lists of objects, names of objects, and recent events. Diagnostic tests, such as blood tests, x-rays, or magnetic resonance imaging (MRI), positron emission tomography (PET), or computed tomography (CT) scans, can help determine the cause of the dementia.

What is the treatment?

In some instances, treating the cause of dementia may successfully reverse some or all of the symptoms. This is the case when the cause is related to a vitamin/nutritional deficiency, tumor, alcohol or drug abuse, reaction to a medication, or hormonal disorder. When dementia is related to an irreversible destruction of brain tissue, such as with Alzheimer’s disease, Lewy body dementia, or multiple strokes, treatment involves improving the patient’s quality of life as much as possible. This includes maintaining a stable, safe, supportive environment and providing constant supervision. While this may be done in the home, people in the advanced stages of dementia may require round-the-clock care in a long-term healthcare facility. It is important to provide the patient with structured activities and avoid disruptions to his or her daily routine. Many patients enjoy therapeutic activities, such as crafts or games, designed specifically for people with dementia. Some medications, such as donepezil and tacrine, have been effective in improving the mental functions of those in the beginning stages of dementia. Patients with hallucinations and delusions may also be treated with antipsychotic drugs, while antidepressant medications are used to treat depression.

Self-care tips

There is currently no known way to prevent dementia associated with Alzheimer’s disease. You can decrease your risk of dementia associated with stroke by maintaining a healthy lifestyle, following a heart-healthy diet, and controlling high blood pressure and high cholesterol. Healthy lifestyles, including not smoking and not abusing drugs and alcohol, go a long way in keeping most people in good health. Caring for a person with dementia is stressful. It is important to learn all you can about the disease, seek the help of support groups, and find a responsible caregiver who can give you a break when needed. There are daycare programs specifically designed for patients with dementia that are good for the patient and the family.

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This information has been designed as a comprehensive and quick reference guide written by our health care reviewers. The health information written by our authors is intended to be a supplement to the care provided by your physician. It is not intended nor implied to be a substitute for professional medical advice.

 

Alzheimer’s Drug Successful Test CTS-21166

clipped from www.omrf.org

CoMentis, a California/Oklahoma City-based pharmaceutical company, is developing a beta-secretase inhibitor, CTS-21166, discovered by Dr. Tang and Dr. Arun Ghosh of Purdue University. Unlike the existing Alzheimer’s drugs that treat only the symptoms, CTS-21166 inhibits, or turns off, the mechanism believed to lead to disease progression. The Phase I clinical trial results showed CTS-21166 to be safe and well tolerated in humans at various dose levels. Following the administration of a single dose,
CTS-21166 reduced the levels of plasma beta amyloid, a potential cause of progression of the disease, by as much as 60 percent.

“CTS-21166 represents an entirely new approach to the treatment of Alzheimer’s disease by inhibiting beta-secretase, an enzyme critical in the production of potentially toxic amyloid beta,” said Henry Hsu, M.D., CoMentis Chief Medical Officer. “It has the potential to become the first-in-class disease-modifying therapeutic agent.”

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Scientists have moved one step closer to developing a new type of drug to treat Alzheimer’s disease. An experimental drug based on discoveries made by Dr. Jordan Tang at the Oklahoma Medical Research Foundation has successfully completed the first phase of testing in human subjects.

CoMentis, a California/Oklahoma City-based pharmaceutical company, is developing a beta-secretase inhibitor, CTS-21166, discovered by Dr. Tang and Dr. Arun Ghosh of Purdue University. Unlike the existing Alzheimer’s drugs that treat only the symptoms, CTS-21166 inhibits, or turns off, the mechanism believed to lead to disease progression. The Phase I clinical trial results showed CTS-21166 to be safe and well tolerated in humans at various dose levels. Following the administration of a single dose, CTS-21166 reduced the levels of plasma beta amyloid, a potential cause of progression of the disease, by as much as 60 percent.

“CTS-21166 represents an entirely new approach to the treatment of Alzheimer’s disease by inhibiting beta-secretase, an enzyme critical in the production of potentially toxic amyloid beta,” said Henry Hsu, M.D., CoMentis Chief Medical Officer. “It has the potential to become the first-in-class disease-modifying therapeutic agent.”

Beta secretase, the enzyme thought responsible for causing Alzheimer’s, was first identified in 2000 by Tang and his colleagues at OMRF. They then developed an inhibitor to stop the enzyme’s action in a laboratory setting. Since that time, Tang and collaborator Arun Ghosh, Ph.D., of Purdue University have worked with CoMentis scientists to design and develop new inhibitors safe for use in humans.

“This is a significant milestone and an unquestionable success,” Tang said. “We are stepping onto uncharted paths in Alzheimer’s treatment and seeing wonderful results so far. Hopefully, this drug will make a real difference and help stop this disease one day.”

While the clinical trials continue, Tang and his colleagues will work on the next generation of drugs to combat Alzheimer’s. “This is not a one-shot deal. We will keep working to build an arsenal to fight this deadly disease.”

During the first phase of testing, the drug was administered by injections, Tang said. Another clinical study, using an oral version of CTS-21166 will likely begin in a few months, followed by a phase II study later this year, he said.

“As far as Phase I testing goes, we could not have expected better results for a new CNS (central nervous system) drug,” he said. “It not only proved the drug candidate is safe, it gave us a whole lot of information on efficacy.”

Tang said the significance of this drug is that it is designed to treat the disease itself rather than treating the symptoms, like all other available Alzheimer’s drugs.

“It would be great if people could take one pill a day and push the onset of the disease back indefinitely,” he said. “This is another milestone toward that goal.”

About Alzheimer’s Disease:
Alzheimer’s disease is a neurological disorder characterized by slow, progressive memory loss due to the gradual death of brain cells. According to the Alzheimer’s Association, the disease affects more than 4.5 million Americans, including 62,000 Oklahomans and nearly half the U.S. population over the age of 85.

About CoMentis:
CoMentis, Inc. (comentis.com) has its headquarters in South San Francisco, with research operations in both South San Francisco and Oklahoma City. The company is engaged in the discovery and development of small-molecule drugs to treat Alzheimer’s disease, age-related macular degeneration (AMD) and cognitive disorders.

About OMRF:
OMRF (omrf.org) is an independent, nonprofit biomedical research institute dedicated to understanding and developing more effective treatments for human disease. Its scientists focus on such critical research areas as Alzheimer’s disease, cancer, lupus and cardiovascular disease.

 

Reversing Symptoms of Alzheimer’s?

Might be a breakthrough. We can only hope.

clipped from www.foxnews.com

A patient with Alzheimer’s disease had their condition improve hugely just minutes after receiving a special injection of a prescription drug approved to treat psoriasis and rheumatoid arthritis and other conditions, according to a new study.

The drug, co-marketed in the U.S. by Amgen and Wyeth under the name Enbrel, dramatically reversed symptoms of an Alzheimer’s disease sufferer minutes after it was injected into the patient’s spine, researchers in the U.S. discovered. The drug, sold in Australia as Etanercept, has also been used off-label for treating Alzheimer’s.

an “exciting” breakthrough, which provided a greater understanding of the disease. “It is unprecedented that we can see cognitive and behavioral improvement in a patient with established dementia within minutes of therapeutic intervention,” Griffin said.

this report details rapid cognitive improvement, beginning within minutes, using this same… treatment modality, in a patient with late-onset Alzheimer’s disease.”

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Arthritis Drug Shows Promise in Reversing Symptoms of Alzheimer’s

A patient with Alzheimer’s disease had their condition improve hugely just minutes after receiving a special injection of a prescription drug approved to treat psoriasis and rheumatoid arthritis and other conditions, according to a new study.

The drug, co-marketed in the U.S. by Amgen and Wyeth under the name Enbrel, dramatically reversed symptoms of an Alzheimer’s disease sufferer minutes after it was injected into the patient’s spine, researchers in the U.S. discovered. The drug, sold in Australia as Etanercept, has also been used off-label for treating Alzheimer’s.

A report on the new study appeared in the Journal of Neuroinflammation this week.

Click here for the full study

Journal editor Professor Sue Griffin from the University of Arkansas said the study was an “exciting” breakthrough, which provided a greater understanding of the disease. “It is unprecedented that we can see cognitive and behavioral improvement in a patient with established dementia within minutes of therapeutic intervention,” Griffin said.

“This gives all of us in Alzheimer’s research a tremendous new clue about new avenues of research, which is so exciting and so needed in the field of Alzheimer’s.

“Even though this report predominantly discusses a single patient, it is of significant scientific interest because of the potential insight it may give into the processes involved in the brain dysfunction of Alzheimer’s.”

Professor Edward Tobinick from the University of California and Professor Hyman Gross from the University of Southern California made the discovery while treating a patient who developed Alzheimer’s disease later in life.

“The efficacy of (Enbrel) … delivered by perispinal administration, for treatment of Alzheimer’s disease over a period of six months has been previously reported in a pilot study,” the researchers said.

“(But) this report details rapid cognitive improvement, beginning within minutes, using this same… treatment modality, in a patient with late-onset Alzheimer’s disease.”