Category Archives: Alzheimer’s

First Steps after a Dementia Diagnosis

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Hurley Elder Care Law offices are based in Atlanta. In the August 2007 issue of their publication “The Elder Issue,” they offer some guidelines for families to follow once a family member has been diagnosed with Alzheimer’s or any dementia type.

Some of the steps families should follow include:

* Organize a family meeting
* Assess your loved one’s abilities
* Learn about Alzheimer’s disease
* Find a good healthcare provider
* Make long term plans
* Create a support network
* Investigate resources for local support

Here’s a copy of the law firm’s advice. Just replace “Alzheimer’s Disease” with whatever disorder of interest to you as I think the guidelines apply to us all.

Robin

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http://www.openmoves.com/accounts/hurley/issue08_0807-online.html#parents_more

Family Caregivers’ Guide to First Steps after a Diagnosis of Alzheimer’s Disease
Hurley Elder Care Law
The Elder Issue
August 2007

Family situations vary tremendously. Sometimes all adult children and the spouse of the person with AD are in agreement as to the next steps to take, but possibilities for family disagreements are many. The cooperation of the person with AD is very important. Sometimes the person with AD is willing to stop driving, sign all of the important legal documents, and accept the care that he or she may need. But often there is resistance to making changes by the person with dementia.

There are concrete steps that family members can take to make the journey smoother. Some of the steps that you can take as a family member of the person with dementia are:

FAMILY MEETING: Arrange for a regular family meeting to discuss all of the issues related to the diagnosis. Discuss the diagnosis with everyone in the family including family members in other cities or states. Talk about what needs to be done now and in the future. Although the responsibilities of various family members will differ, everyone needs to know what is happening. It is a good idea to have one person who will speak for the family on issues related to health care and the same person or a different person who will speak for the family on financial issues. After the family decides the correct person for each responsibility, formal power of attorney forms can be signed. For example, some family members may live in the same city as the person with dementia. It would make logical sense to designate one of those family members with power of attorney for health care since they can go to the doctor’s office with the person with dementia.

FAMILY MEMBER WITH AD: Make a realistic assessment of the abilities of the person with the disease. The family members cannot rely solely on what the person says she or he can do. These actions must be observed first hand. The idea is to give the person with the disease as much as they can reasonably do for themselves, while not making unrealistic demands. Driving, making financial decisions, staying alone, and using the kitchen safely are all examples of issues that need to be examined on a regular basis. As an example, a person with dementia may think that it is still safe to drive the car alone even though she or he may have gotten lost recently.

LEARNING ABOUT AD: Learn all that you can about the disease. Read books, search the Internet, talk with other family caregivers like yourself, and talk to knowledgeable health care providers. One good place to start is the Alzheimer’s Association at www.alz.org and 1-800-272-3900. A very useful book is “The 36 Hour Day: A Family Guide for Persons with Alzheimer’s Disease, Related Dementing Illnesses, and Memory Loss in Late Life” by Nancy Mace & Peter Rabins.

MEDICAL CARE: Find a health care provider with whom you can work. It may be the physician who diagnosed the disease, or it could be a research physician at Wesley Woods of Emory University or another research program. The person you work with should understand the progression of the disease and know the latest information on medications to treat the symptoms. It is very important that someone goes to each physician appointment with the individual suffering from Alzheimer’s disease in order to better understand the disease and the treatment. This is actually true for most people since they cannot remember everything that the doctor told them five minutes later, regardless of whether they have memory impairment or not.

LIFE CARE PLANNING. Make certain that the necessary legal and financial plans are in place. The most important thing that people should consider is how to find, get and pay for good long term care. This includes the need for an evaluation of the assets available, who needs to have access to those assets and what are the alternative means of financing long term care. From the legal document perspective, a review of or putting into place a Durable Power of Attorney, Health Care Power of Attorney and a Will and/or Trust is very important while the individual still has sufficient capacity to make such decisions.

EMOTIONAL SUPPORT: Set up a support system for yourself. Who in your family or among your circle of friends would be the most supportive of you and your family? Work with them in finding the help you need. You may just need to have someone listen to you and provide some relief from care giving. You may want to join a support group sponsored by the Alzheimer’s Association to work through the feelings that you have and to get ideas about how to best care for your family member with AD. Remember that if you burn out as a caregiver, you are no good to anyone, including yourself.

SAFE RETURN: At a minimum, register the person with Alzheimer’s disease in Safe Return. This is a program of the Alzheimer’s Association that consists of a national registry and an identification bracelet. The cost for Safe Return is $40.00 for the first year and $20 for each year your relative is in the program. With changing technology, there are more and more options available for people to locate a lost or wandering loved one.

RESOURCES TO HELP: Find out about services available in Georgia to assist a person with Alzheimer’s disease. Develop a list of places to contact including adult day, home care agencies, and long term care facilities. Know the services available in your community so you can access these organizations and services as you need them.

CAREGIVER SUPPORT: Take care of yourself. You need to think of yourself as a long-distance runner, not as a sprinter. Pace yourself. Prepare for the long haul. This is not a disease that develops or progresses quickly. Learn to recognize your stress risks and find ways to relieve them. Accept help. Your life and the life of the person with the disease depend upon you caring for yourself.

DIFFICULT SITUATIONS: Difficult situations can easily develop related to family members with Alzheimer’s disease. One example is when the spouse or adult children will not take the keys away from the person with AD, nor will they admit that there are safety issues involved because they themselves are in denial. People in certain stages of the disease cannot make rational decisions. Remember that and take action to protect not only your family member, but the public at large. Another frequently occurring situation happens when one spouse has Alzheimer’s disease and the other spouse has physical health problems. In this circumstance, the husband and wife need different kinds of care and may not be able to stay in their home indefinitely. It pays to be prepared for this eventuality.

HELPING CHILDREN AND TEENS. If you are an adult daughter or son caring for a parent with Alzheimer’s disease, it is likely that you have young children or teenagers still living in the home. Children often experience a wide range of emotions when a parent or grandparent has AD. Younger children may be fearful that they will get the disease or that they did something to cause it. Teenagers may become resentful if they must take on more responsibilities or feel embarrassed that their parent or grandparent is “different.” It is important to find out what the emotional needs of your children are and try to meet them.

The diagnosis of Alzheimer’s disease or any related dementia can be very threatening news, but when a spouse and/or adult children are willing to deal with the illness in a systematic manner, family conflicts can be minimized and the quality of life of the person with the disease can be maximized. The most important thing to do is to take action and take action quickly. The sooner that action is taken, the more options there are available.

“Diagnostic criteria of dementia” (Canadian journal article)

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I’ve been looking lately into the definition of dementia. When caregivers of those with progressive supranuclear palsy (PSP) call me for the first time, I often ask “does your loved one have dementia,” knowing that at least half of those with PSP have dementia as a primary symptom. Often the caregivers will say “no,” and then go on to tell me how their loved one can no longer balance a checkbook, make investment decisions, or make any sort of decisions. Perhaps these caregivers are embarrassed to say that their loved ones are demented. Or perhaps the only kind of dementia they are aware of is Alzheimer’s Disease, and they know their loved ones don’t have that. Or perhaps we are using different definitions or criteria.

The only standard definition of dementia I’m aware of is the DSM IV criteria. (DSM = Diagnostic and Statistical Manual for Mental Disorders, Fourth Edition, published by the American Psychiatric Association, Washington, DC.) According to a University of Alberta website:

“Dementia is a clinical state characterized by loss of function in multiple cognitive domains. The most commonly used criteria for diagnoses of dementia is the DSM-IV. Diagnostic features include: memory impairment and at least one of the following: aphasia, apraxia, agnosia, disturbances in executive functioning. In addition, the cognitive impairments must be severe enough to cause impairment in social and occupational functioning. Importantly, the decline must represent a decline from a previously higher level of functioning. Finally, the diagnosis of dementia should NOT be made if the cognitive deficits occur exclusively during the course of a delirium.”

(Wikipedia definitions: aphasia = loss of the ability to produce and/or comprehend language; apraxia = loss of the ability to execute or carry out learned purposeful movements, despite having the desire and the physical ability to perform the movements; agnosia = loss of knowledge or loss of the ability to recognize objects, persons, sounds, shapes, or smells)

The problem is that there are many different types of dementia (70 or 80 types) and their characterizations are all so different. And, as the abstract below indicates, not all types of dementia have memory impairment.

Robin

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The Canadian Journal of Neurological Sciences. 2007 Mar;34 Suppl 1:S11-8.

Bouchard RW.
Clinique de mémoire et unité de recherche Alzheimer, CHA Hôpital de I’Enfant-Jésus, Québec, QC, Canada.

In the past two decades there has been a tremendous effort among clinicians and searchers to improve the diagnostic criteria of the dementias on the basis of the differential neurological and neuropsychological profiles. This was an obligatory requirement for clinical trials and the development of treatments. Over the years it became rapidly evident that the cohorts of patients in studies had some degree of heterogeneity, making it difficult to interpret the results of some studies, particularly in the vascular dementias and the mild cognitive impairment (MCI) group. For example, many sub-types of the vascular group were included in clinical trials, such as the cortical strokes, the lacunar states and the diffuse white matter disease cases, and some of the patients might have had also mixed pathology. In addition, the standard DSM IV criteria for dementia no longer represent our present knowledge of the clinical profile of some of the dementias such as vascular dementia (VaD) and fronto-temporal dementia where the memory impairment is not necessarily the first requirement. To improve the validity of clinical trials and eventually help developing more appropriate treatments, we revised the present diagnostic criteria and made recommendations for some changes in the context of the 2nd Canadian Conference on the Development of Antidementia Therapies, held in 2004 and reviewed in the light of the recent literature as of early 2006. It is expected that in the near future, these dementia criteria for clinical trials will have to be revised again in order to include specific subtypes of the dementias as well as biomarkers, structural and functional imaging.

PubMed ID#: 17469675 (see pubmed.gov for the abstract only)

Distinguishing Alzheimer’s from Dementia with Lewy Bodies

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Here’s an easy-to-read newspaper article from Science Daily (sciencedaily.com) on using “changes in alertness and cognition” to help distinguish Alzheimer’s Disease (AD) from Dementia with Lewy Bodies (DLB).  A local support gorup member suggested this is a good article to give family and friends about Lewy Body Dementia.

Robin
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www.sciencedaily.com/releases/2004/01/040116080751.htm

New Method Of Distinguishing Alzheimer’s From Lewy Body Dementia
Source: American Medical Association
Science Daily
Published 1/16/04

NEW YORK — Looking at specific changes in alertness and cognition may provide a reliable method for distinguishing Alzheimer’s disease (AD) from dementia with Lewy bodies (DLB) and normal aging, according a new study from the January 27, 2004, issue of Neurology, the official journal of the American Academy of Neurology, co-authored by Tanis J. Ferman, Ph.D., an expert on DLB.

Lewy bodies are round collections of proteins in the brain that are considered the pathological hallmark of Parkinson’s disease. Lewy bodies are never found in healthy normal brains. In Parkinson’s disease the Lewy bodies are largely localized to an area of the brain stem called the substantia nigra. In DLB, Lewy bodies are also found in brain’s cortex.

Although DLB accounts for as much as 20 to 35 percent of the dementia seen in the United States, treatment and diagnosis is often complicated by a lack of information about the disease. In the study, Dr. Ferman and colleagues examined episodes of fluctuation in cognition (problems in thinking or concentration) experienced by individuals with AD or DLB or normal older adults who had no signs of dementia.

“Fluctuating cognition is an important symptom of DLB but has been the center of some controversy because it is comprised of a number of behaviors, some common to all dementias and perhaps even found in normal aging,” said Dr. Ferman, assistant professor and clinical neuropsychologist in the department of psychiatry and psychology at the Mayo Clinic in Jacksonville, Fla. “Even though attempts have been made to carefully describe these behaviors, they have not been used reliably as diagnostic tools.” Dr. Ferman spoke today at an American Medical Association media briefing on Alzheimer’s disease in New York City.

Some of the common behaviors of DLB that comprise fluctuating cognition include episodes of confusion, excessive sleepiness, a waxing and waning of cognition, inattention, incoherent speech and varying ability to perform tasks. When this occurs, family members often describe their loved ones as “zoned out,” or “not with us.” This collection of behaviors is called fluctuations because these behaviors come and go. In the study, 200 normal older adults, 70 patients with AD and 70 patients with diagnosed DLB were compared on aspects of fluctuating cognition. Spouses, adult children or others involved with the subject on a day-to-day basis provided information.

Four characteristics significantly distinguished patients with DLB from persons with AD and normal elderly controls: daytime drowsiness and lethargy despite getting enough sleep the night before; falling asleep two or more hours during the day; staring into space for long periods and episodes of disorganized speech.

“For the normal elderly control group, one or two of these behaviors was found in only 11 percent of the group,” said Dr. Ferman. “For the patients with AD, one or two of these behaviors were not uncommon, but over 63% of the patients with DLB had three or four of these behaviors. This gives us a clear set of behaviors to use to reliably distinguish the fluctuations of Lewy body dementia from Alzheimer’s.”

“Medications that may be helpful to an Alzheimer’s patient may actually aggravate DLB symptoms such as hallucinations and symptoms of parkinsonism. Other medications that are only marginally helpful in AD sometimes have a dramatic impact on Lewy body dementia,” said Dr. Ferman. “It’s very important to diagnose correctly because proper treatment can help us manage symptoms and help caregivers cope.”

Both AD and DLB are dementias, that is, classified by a decline in thinking skills greater than expected by age that interferes with the activities of daily living, explained Dr. Ferman. In AD the first loss in thinking skills is in memory; in DLB the earliest loss appears to be with attention and visual perception. These differences may be related to different patterns of damage to the brain. In addition, patients with DLB may have fully formed hallucinations, Parkinson-like movement problems and/or fluctuating cognition. These symptoms may be present in late-stage AD, but one or all of them are present in early DLB.

“As our understanding and ability to recognize Lewy body dementia has improved, there has been an explosion of research,” said Dr. Ferman. “As we develop effective treatments to prevent or delay progression of DLB, early diagnosis will be key.”

Note: This story has been adapted from a news release issued by American Medical Association.

Differentiating DLB from AD (Neurology ’04, Ferman)

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This 2004 medical journal article is about differentiating Dementia with Lewy Bodies (DLB) from Alzheimer’s Disease (AD) and normal aging. The lead author of this article is on the Scientific Advisory Council of the Lewy Body Dementia Association. I’ve copied the abstract below.

The abstract notes that “four characteristics of fluctuations were found to significantly differentiate AD from DLB, (including) daytime drowsiness and lethargy, daytime sleep of 2 or more hours, staring into space for long periods, and episodes of disorganized speech.”

If your eyes glaze over on the abstract, read the Science Daily article from January 16, 2004 on this research!

https://www.sciencedaily.com/releases/2004/01/040116080751.htm

Robin
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www.neurology.org/cgi/content/abstract/62/2/181

NEUROLOGY 2004;62:181-187

DLB fluctuations
Specific features that reliably differentiate DLB from AD and normal aging

T. J. Ferman, PhD, G. E. Smith, PhD, B. F. Boeve, MD, R. J. Ivnik, PhD, R. C. Petersen, MD PhD, D. Knopman, MD, N. Graff-Radford, MBBCh MRCP, J. Parisi, MD and D. W. Dickson, MD

From the Department of Psychiatry and Psychology (Dr. Ferman), Mayo Clinic and Foundation, Jacksonville, FL; and Departments of Psychiatry and Psychology (Drs. Smith and Ivnik), Neurology (Drs. Boeve, Petersen, Knopman, and Graff-Radford), and Pathology (Drs. Parisi and Dickson), Mayo Clinic and Foundation, Rochester, MN.

Objective: To determine whether certain aspects of fluctuations reliably distinguish dementia with Lewy bodies (DLB) from Alzheimer’s disease (AD) and normal aging.

Methods: Participants included 200 community-dwelling cognitively normal elderly persons, 70 DLB patients, and 70 AD patients with collateral informants. A 19-item questionnaire was administered to the informants that queried about symptoms of fluctuations and delirium.

Results: Fluctuations occur infrequently in nondemented elderly persons aged 58 to 98 years. In contrast, four characteristics of fluctuations were found to significantly differentiate AD from DLB. These composite features include daytime drowsiness and lethargy, daytime sleep of 2 or more hours, staring into space for long periods, and episodes of disorganized speech. The presence of three or four features of this composite occurred in 63% of DLB patients compared with 12% of AD patients and 0.5% of normal elderly persons. Informant endorsement of three or four of these items yielded a positive predictive value of 83% for the clinical diagnosis of DLB against an alternate diagnosis of AD. Endorsement of fewer than three items had a negative predictive value of 70% for the absence of a clinical diagnosis of DLB in favor of AD. The authors present evidence of test-retest reliability, convergent validity, and empirical verification with a separate cross-validation sample. Fluctuations were not associated with any particular combination of hallucinations, parkinsonism, or REM sleep behavior disorder.

Conclusions: Based on informant report, disturbed arousal and disorganized speech are specific aspects of fluctuations in dementia with Lewy bodies that reliably distinguish dementia with Lewy bodies from Alzheimer’s disease and normal aging.

PubMed ID #: 14745051 (see pubmed.gov for this abstract only)

Boston Globe article- anesthesia, delirium+dementia

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There is an article in today’s (2/12/07) edition of The Boston Globe newspaper about the danger of hospital stays for the elderly and those with dementia. Here’s the article in a nutshell: “Doctors used to believe that delirium was a short-lived problem for older, hospitalized patients. But research now suggests that delirium — a sudden, serious mental confusion — can linger for months and can increase the likelihood of more serious mental decline, including dementia… Patients with dementia are at least five times more likely to experience delirium while hospitalized than patients with sound minds.”

Also, the article draws attention to the anesthetic isoflurane. This inhaled anesthetic was mentioned in the article on anesthesia and AD (circulated this UK newspaper article to the group on 1/27/07).

Here’s a link and copy of the full article:

http://www.boston.com/news/globe/health … ?page=full

An end’s beginning
More than half of all elderly hospitalized patients suffer severe confusion. Many ultimately decline into dementia. Are there common triggers to both?

By Alice Dembner, Globe Staff
The Boston Globe
February 12, 2007

“I’m dead. Are you dead, too?”

Larry Carsman’s mother had always been solidly grounded. But four years ago, as she emerged groggily from surgery, she blurted out those chilling words.

Her delirium — likely from some combination of the surgery, anesthesia, and painkillers — lifted within a day, he said. But his mother, then 81, began a slide into dementia.

“The assumption was that she would come out of it,” said Carsman, of Wellesley. “But she never really did.”

Before, she was sharp enough to drive 25 miles a day to a part-time job and care for herself. After, she forgot to buy food. She couldn’t keep track of her medications. Bills went unpaid. She lost her job. And within a few months, the family moved her to supported housing and later, assisted living.

Her deterioration provides a stark example of the new connections doctors are drawing between two illnesses that wreak havoc on millions of older patients.

Doctors used to believe that delirium was a short-lived problem for older, hospitalized patients. But research now suggests that delirium — a sudden, serious mental confusion — can linger for months and can increase the likelihood of more serious mental decline, including dementia.

And the harmful effects may go both ways. Patients with dementia are at least five times more likely to experience delirium while hospitalized than patients with sound minds, according to Dr. Sharon Inouye , director of the Aging Brain Center at Hebrew SeniorLife, based in Boston.

The connection between these illnesses is still a mystery. But new studies suggest a genetic link and a possible tie-in with the most commonly used general anesthesia agent. If the connection can be solidly established, researchers say it could provide a new way to fight dementia.

“If we could prevent delirium — and we know we can — then we might prevent dementia from developing or getting worse” in many cases, said Inouye, who is leading a group of local scientists examining the connections.

Delirium causes severe confusion that is often accompanied by hallucinations and agitation but may also bring withdrawal or extreme sleepiness. Research shows that delirium affects more than half of all elderly patients who are hospitalized or undergo surgery. It is also extremely common in patients of all ages treated in intensive care units. Studies show delirium itself can lengthen hospitalization and hasten death.

For many patients, the delirium is caused by a combination of factors including medical and surgical procedures, infections, medications, malnutrition, immobility, noise, and sleep disruption. For the sickest, it can be triggered by something as simple as one sleeping pill, Inouye said.

Several studies have found a connection with dementia, a range of conditions including Alzheimer’s that — over many years — destroys memory, organized thinking, and eventually everyday functioning. One particularly striking study found that 60 percent of hospitalized patients with delirium were diagnosed with dementia over the next three years, compared with 18 percent of those without, according to a review of the research by James C. Jackson, a neuropsychologist at Vanderbilt University in Nashville.

“It’s a very big public health problem flying under the radar screen,” he said.

A paper by Jackson and colleagues, published last month in Critical Care Medicine , found the first genetic link between the two brain disorders. In a small group of ICU patients, those with a genetic variation called APOE4 were more likely to have longer-lasting delirium. APOE4 also increases the risk of getting Alzheimer’s disease.

“We’re beginning to think that genetic factors may predispose people to delirium,” Jackson said. “Those could be the same factors that predispose them to dementia.”

Inouye helped convene a symposium last year to look for connections between delirium and dementia and coordinated publication of a group of research papers last month in the Journal of Gerontology: Medical Sciences .

One of those papers studied the effect of isoflurane, the drug most commonly used to induce general anesthesia. Because of the high rate of post operative delirium, earlier research suggested that anesthesia might be a risk factor, but the evidence is not conclusive.

When isoflurane was “given” to cultured brain cells in the lab, it triggered the death of some cells. That, in turn, caused a build up of a protein called beta-amyloid that crowds the brains of people with Alzheimer’s. The anesthetic also increased the harmful clumping of beta-amyloid and that accumulation caused more cell death.

“Isoflurane can cause the pathology underlying dementia,” said Dr. Zhongcong Xie , an anesthesiologist at Massachusetts General Hospital who led the research, which was also published last week in the Journal of Neuroscience . “It can also cause a delirium. We suggest that they share a similar pathology — one agent causes both, but one illness happens quickly, and one happens over a long time.”

Xie, assistant professor of anesthesia at Harvard Medical School, called the finding “alarming” but warned against panic because of the long history of safe use of isoflurane and because results in cells don’t always hold up in real people. Xie and colleagues have begun testing the effects of isoflurane in mice and in people.

“It’s too early to take isoflurane out of the operating room,” said Rudy Tanzi , director of genetics and aging research at Mass. General and a co-author of the paper. “And for healthy people, it may not be a problem.”

However, Tanzi said he asked doctors to give his elderly mother another anesthetic instead of isoflurane when she had knee replacement surgery last summer. In the past, after surgeries, his mother was often delirious for days, he said. This time, she woke up and asked whether the Red Sox were on television. “I’ve got to see my Big Papi,” she told Tanzi.

Larry Carsman said no one focused on anesthesia as a possible cause of his mother’s delirium. Instead, they looked to the painkiller Demerol , which he said had made her delirious in the past and was given to her by hospital doctors unaware of that history.

Before the delirium, Carsman’s mother was occasionally forgetful, but showed no signs of dementia, he said. Highly educated with a doctorate in gerontology, she even directed her own medical care. Yet, a year after the delirium, she was diagnosed with dementia.

“I would love for my mother’s dementia not to have gotten this big shot” in the arm from the delirium, he said. “She was so independent. Had she not taken this downturn, she could have stayed in her house longer.”

Alice Dembner can be reached at [email protected].

© Copyright 2007 Globe Newspaper Company.