Memory Memos

2012-03-04T15:29:00.013-05:00

"One benefit of a support group is that it can help create a safety net for caregivers who arrive feeling very alone, weary, and vulnerable. The emotional support is immediately and generously exchanged, but often more tangible support is given also. We learn from each other about available resources, validate each other's feelings when we are second-guessing ourselves, encourage each other to take time out for ourselves to recharge, and even manage to laugh together."

from http://www.wellspouse.org/

2012-02-29T12:43:00.005-05:00

We had a very enjoyable Memory Cafe this past Saturday. We had an excellent turnout, despite the snow which fell the night before (the first snowfall in a while!)

Here is Kim shoveling the walk between the parking lot and the building:

As usual, Jenny and our partners from Alpha Xi Delta made a terrific breakfast...

...which everyone enjoyed.

While people ate, we passed out a recent article from the New York Times, "Finding Joy in Alzheimer's" and asked people to read it so we could discuss it after our morning entertainment.

Click here to read the article.

We had a good discussion; our attendees appreciated the positive attitudes expressed in the article - focussing on preserved abilities, and the benefits of living in the present, for example, but also felt that the stresses and losses of Alzheimer's disease were not given sufficient attention.

~~~~

Our entertainment today was a wonderful performance by

Here are some photos and a few short videos from their performance:

Click on the arrow to play the video:

Please join us in March!

2012-02-25T09:10:00.000-05:00

Saturday, February 25, 2012

10 AM - Noon

2012-02-22T19:11:00.001-05:00

Draft National Plan To Address Alzheimer’s Disease

Click here to read the plan in full

2012-02-22T19:07:00.002-05:00

2012-02-22T18:54:00.001-05:00

2/22/12

Feds Announce U.S. Alzheimer’s Plan, But Will it Have an Impact?

The Department of Health and Human Services unveiled Wednesday the first draft of a national action plan against Alzheimer’s disease, which aims to come up with effective treatment and prevention strategies by 2025.

The plan, much anticipated by many in the Alzheimer’s community, also targets goals of improving care, expanding support for caregivers and heightening public awareness, in addition to tracking the government’s progress in tackling Alzheimer’s.

To reach these objectives, proposed strategies include coming up with better ways to research the disease, train health-care professionals and coordinate collaboration between private and public stakeholders.

However the devil is in the details — and how they play out, some experts say.

“For me, it’s about implementation,” Eric Hall, a plan advisory council member and chief executive of the Alzheimer’s Foundation of America, an advocacy group, tells the Health Blog.

One major obstacle is funding. Earlier this month, the administration announced $80 million in new funding for Alzheimer’s research in fiscal year 2013, but how much additional money is needed to carry out the plan remains to be seen.

“This is a great jump start, but clearly to get to that huge goal of prevention, treatment, delaying the onset [of disease] … it’s going to take a large investment,”Ronald Petersen, another committee member and head of the Mayo Alzheimer’s Disease Research Center, tells us.

Apart from funding, there are still ways to make progress, such as increasing public-private partnerships and by improving coordination between health agencies to minimize redundancy, according to Zaven Khachaturian, head of a non-profit called PAD2020 – The Campaign to Prevent Alzheimer’s Disease by 2020 and another committee member.

2012-02-20T07:32:00.003-05:00

from Johns Hopkins Health Alerts:

Forgetfulness, Confusion

and Disorientation -- Symptoms of

Chemobrain

Most cancer patients who undergo chemotherapy mentally prepare themselves for the side effects of chemotherapy: fatigue, nausea, mouth sores and hair loss. However, many are not ready for problems in concentration and memory -- the forgetfulness, confusion and disorientation that affect some people undergoing chemotherapy treatment. This condition has been dubbed "chemobrain" or "chemofog."

Chemobrain is an important issue for cancer patients because cognitive problems can have a negative impact on their ability to work or complete everyday tasks, and memory issues have a negative effect on quality of life in general. While cancer survivors have talked about these cognition problems for years in their support groups, the medical field had not given it much credence -- until recently, that is.

Research carried out over the past few years has involved cognitive testing, laboratory studies and brain imaging of patients undergoing chemotherapy. In a study in the journal Cancer, researchers from the National Cancer Center Hospital East in Chiba, Japan, noted that the shrinking of brain structures due to chemotherapy might be a cause of the memory complaints.

If you are a cancer patient and you have memory complaints, don't immediately suspect your chemotherapy. There could be other causes at work. Underlying medical issues, such as anemia or hypothyroidism, can cause cognitive deficits, and so can depression and poor sleep, with its accompanying daytime fatigue. Certain medications can also cause cognition problems.

If you are undergoing any type of cancer treatment or have just finished up your chemotherapy sessions, be sure to tell your doctor any problems you've observed with your memory or your ability to concentrate.

Although we still don't know definitively what causes cancer-associated cognitive changes and whether these changes will be temporary or permanent, one way to limit any mental confusion you may be experiencing is to stick to a routine, with written schedules and reminders to track appointments, activities and important dates. Using Post-It notes and placing them around the home and workplace is also a great way to create daily visuals to keep you focused.

2012-02-19T14:25:00.001-05:00

Finding Joy in Alzheimer’s

By ROBERT LELEUX. The New York Times – 2/16/12

Seven years ago, when my grandmother JoAnn was first diagnosed with Alzheimer’s, the news sent me into a tailspin of fear and sadness.

In my splintered Southern family, JoAnn had been more than my grandmother. The Auntie Mame of my Texas childhood, she taught me that happiness requires a great deal of thumbing one’s nose at convention. When I was 4, during an afternoon trip to the art museum, she told me to run my fingers along the brushstrokes of a particularly stunning Van Gogh: “They may kick us out of here, darlin,’ ” she drawled into my impressionable little ear, “but you’ll never not have touched that painting.” It was a life-affirming, if inappropriate, lesson.

Without JoAnn’s outrageous example, I’m not sure I’d have had the courage to move to Manhattan, to come out of the closet, or ironically, to accompany her through the final years of her life.

Little did I know that even after she was diagnosed with Alzheimer’s, my grandmother had only begun to educate me.

“The wonderful thing about Alzheimer’s,” she once quipped after her diagnosis, “is that you always live in the moment.”

This was a zinger intended to conceal her frustration at having forgotten the punch line to one of her signature anecdotes. But it was, nevertheless, quite true. Through the haze of our grief, my grandfather Alfred and I began noticing that, along with her memories, JoAnn’s grudges, hurt feelings, worries and regrets were disappearing. In fact, within a year, she seemed happier than ever, more present and at peace.

Like King Lear, as JoAnn lost reason, she gained clarity. And as with Lear, her dementia provided her the chance to meet her estranged daughter, my mother, for the first time again. Their chronic conflict had been among the great sorrows of my life; but suddenly, the past was, quite literally, forgotten.

So often, I hear people say they’d rather die than get Alzheimer’s. This is, in part, because they believe the disease will force them to abandon themselves to oblivion. But my grandmother showed me that we are more than the sum of our memories. She taught me the vital importance of forgetting; and that sometimes it’s only our commitment to remembering that prevents us from accepting the love and peace that surrounds us.

Over the past generation, our country has experienced a revolution in our thinking about children with autism and other developmental conditions. We now understand that, far from being “defective” or “backward,” these children are merely different, boasting their own strengths and talents. The stigma once associated with their realities has been exposed as bias, another awful consequence of applying a single arbitrary standard to humanity’s infinite variety. Sadly, however, we’ve yet to offer this type of compassionate understanding to people with Alzheimer’s. Still often considered “enfeebled” or “senile,” this community, with its wisdom and insight, continues to be discounted.

I routinely hear right-minded, enlightened folks, who would never think of labeling a child “retarded,” describe people with Alzheimer’s as having “lost themselves,” as being “already gone,” or even, as members of “the living dead.”

Indeed, children of all stages and development abilities are understood to be perfectly where they are in life. Few people, for instance, would consider it pathetic if a small child couldn’t dress or go to the bathroom alone. But somehow, as older people lose some of their abilities as a natural part of the aging process, we pity them. Nursery schools are stimulating, cheerful, colorful places, while many nursing homes still resemble Dickensian orphanages, environments that, were you to substitute their populations with the very young, would be shuttered for reasons of inhumanity.

One comes to realize that our valuation of children is somehow based, not in our respect for the life-stage they currently occupy, but upon their future as income-producing adults. For older people, having exhausted their “usefulness,” it’s as if their nearness to death somehow makes the quality of their lives less important. America, it seems, is no country for old men, and (my apologies to Yeats), it’s certainly no country for old women, either.

Ironically, as my grandmother caused me to realize, “grandmother” is virtually the only honored role available to women over 65. Those seniors who are celebrated, like the divine Betty White, are the exceptions who prove the rule — the Shirley Temples of the senior set, these “precocious” elders are rewarded for continuing to exhibit the characteristics of middle age rather than old age.

“They’ve still got it,” it is said of them, “still as sharp as ever.”

I’d argue that, given our aging population and the Alzheimer’s epidemic, it’s essential that we reassess our thinking about the elderly and old age dementia. Certainly, a great deal of pain and hardship can accompany life’s third act (and, for that matter, any of its acts). But what I learned from my grandmother’s journey through Alzheimer’s was that my grief regarding her condition had largely to do with my failure to accept the change she was undergoing.

Regardless of how I felt about it, JoAnn’s change was the truth. What was gone in her was not missing. And the more fully I understood that, the more present I was able to be during her final years. In that struggle to be present, to appreciate every minute spent “walking her to the garden gate,” as we say back in Texas, JoAnn was once again my example. Like on that long-ago afternoon at the Houston art museum, she was still guiding my hand.

Robert Leleux is the author of “The Living End: A Memoir of Forgetting and Forgiving,” from St. Martin’s Press.

Let us know what you think of this article; attach a comment, below.

We will discuss this interesting article at next Saturday's Memory Cafe.

Please join us!

2012-02-14T22:47:00.002-05:00

2012-02-14T22:46:00.000-05:00

Exercise a Defense Against Dementia:

Odds of dying from brain deterioration were less for physically fit individuals

MONDAY, Feb. 13 (HealthDay News) -- Here's another reason to get into shape: Physical activity may reduce the risk of dementia-related death, according to a new study.

Researchers assessed the health of more than 45,000 men and nearly 15,000 women, ages 20 to 88 years, in the United States and grouped them into one of three fitness categories -- low, middle or high.

After an average follow-up of 17 years, about 4,050 participants died. Of those deaths, 164 were attributed to dementia (72 vascular dementia and 92 Alzheimer's disease). Of those 164 deaths, 123 of the people were in the low-fitness group, 23 were in the middle-fitness group, and 18 were in the high-fitness group.

People in the high- and medium-fitness groups had less than half the risk of dying as those in the low-fitness group, the researchers concluded.
The study appears in the February issue of the journal Medicine & Science in Sports & Exercise.

"These findings support physical-activity promotion campaigns by organizations such as the Alzheimer's Association and should encourage individuals to be physically active," study author Riu Liu said in a journal news release.

"Following the current physical-activity recommendations from the American College of Sports Medicine will keep most individuals out of the low-fit category and may reduce their risk of dying with dementia," Liu added.
Liu conducted the study as part of her dissertation at the University of South Carolina. She is now a postdoctoral fellow at the U.S. National Institute of Environmental Health Sciences.

While deaths in the United States associated with heart disease, breast cancer and stroke have declined in recent years, deaths related to dementia and Alzheimer's rose 46 percent between 2002 and 2006, according to the release.

The study doesn't prove that exercise will prevent dementia, however. Other factors may also come into play.

2012-02-13T20:43:00.000-05:00

Overeating May Raise Risk for

Memory Problems

Study: Eating More Than 2,100 Calories a Day May Place Seniors at Higher Risk

By Denise Mann
WebMD Health News

Feb. 12, 2012 -- Overeating may double your risk of developing memory problems.

Older adults who ate between 2,100 and 6,000 calories each day were twice as likely to develop memory problems. The new findings are slated to be presented at the annual meeting of the American Academy of Neurology in New Orleans.

The more calories the adults took in, the higher their risk for mild cognitive impairment (MCI), which is the medical term for mild memory loss. While not serious enough to seriously interfere in their daily lives, people with MCI may have problems remembering recent events and/or new information, as well as have issues with other brain functions. People with MCI are at greater risk for developing dementia, but not all do.

The study involved more than 1,200 people between the ages of 70 and 89, including 163 who had signs of MCI. Participants described their diet during the preceding year in a food questionnaire.

One-third ate between 600 and 1,526 calories per day, one-third ate between 1,526 and 2,143, and one-third ate between 2,143 and 6,000 calories per day, the study shows. The results took into account other factors such as age, sex, education level, history of stroke, and depression.

Risk Increases With Calories

Those who took in the highest number of calories per day had double the risk for MCI.

“This fits into what we know about midlife risk factors for Alzheimer's disease,” says Sam Gandy, MD, PhD, in an email. He is the associate director of the Mount Sinai Alzheimer's Disease Research Center in New York. “We know that obesity increases risk for Alzheimer's, and we know that caloric restriction decreases risk for Alzheimer's, so the overeating story fits well."

David Loewenstein, PhD, agrees. “More and more research has shown that anything that is good for the heart is good for the brain, and when people overeat, there are complications including risk for diabetes, stroke, and memory problems.” He is a professor of psychiatry and behavioral sciences at the University of Miami Miller School of Medicine.

Eat Less, Exercise More to Protect Brain

His advice? Try to rein in the number of calories you eat, and exercise on a regular basis. “If you cut calories and replace empty calories with nutritious foods, your risk for brain disease and heart disease are reduced significantly.”

Marc L. Gordon, MD, says the new study can’t tell us whether eating too much causes memory problems. It may be that memory problems cause us to eat too much. He is the chief of neurology at Zucker Hillside Hospital in Glen Oaks, N.Y., and an Alzheimer’s researcher at The Feinstein Institute for Medical Research in Manhasset, N.Y. “To say that we should advocate calorie restriction is not warranted. More needs to be done to try and factor in the direction of this association.”
Christine Tangney, PhD, is an associate professor of clinical nutrition at Rush University Medical Center in Chicago. “People in their 70s and 80s should not be consuming more than 2,100 calories per day,” she says. “Anyone consuming that many calories is at risk for many diseases including poor cognition and obesity.”
These findings were presented at a medical conference. They should be considered preliminary as they have not yet undergone the "peer review" process, in which outside experts scrutinize the data prior to publication in a medical journal.

2012-02-12T14:17:00.002-05:00

Coping with

Communication Challenges

From:

The Alzheimer's Family:
Helping Caregivers Cope
Robert B. Santulli, M.D.

Aphasia - language impairment – is one of the cardinal features of Alzheimer’s disease. This involves both expressive language (that is to say, the ability of the afflicted individual to express thoughts, feelings or other information) as well as receptive language (the ability to comprehend language, verbal or written, which is received). The time of onset and severity of this symptom varies from one individual to the next, but it is almost always present to a greater or lesser degree from relatively early in the disease process, and worsens as the disease progresses, to the point when, by the late-moderate or early-severe stage of illness, verbal communication is almost always extremely disordered, limited or nonexistent.

It is important to remember that, as this happens, the individual does not lose his or her ability to understand nonverbal language; if anything, the sensitivity to nonverbal communication seems heightened, at least initially, while verbal language skills are deteriorating.

It is also important to keep in mind that, while receptive communication is definitely impaired along with expressive communication in most people with Alzheimer’s, receiving and understanding communication is usually better preserved than producing (expressing) communication, at least until late in the disease. Thus, the person who has great difficulty speaking may be able to understand much of what is being said to or around him or her. Too often persons will talk about someone with Alzheimer’s disease as if the individual is not present, even when they are not only present but understanding much of what is being said.

In addition to the difficulties with expressive and receptive language, persons with Alzheimer’s, of course, have progressive difficulty with short term memory. As the disease progresses, the ability to hold something in mind for more than a few moments diminishes significantly, so that the person with Alzheimer’s may begin a sentence and, half way through, actually forget what he or she was talking about. He or she may also be unable to understand longer sentences, paragraphs, or communications that contain multiple ideas, concepts, directions, or facts, for the same reason.

With these considerations in mind, here are a list of of “do’s” and “don’ts” for communicating with someone with Alzheimer’s disease which the clinician should consider sharing with the family:

DO:

1. Do use techniques to attract and maintain the person’s attention

Turn of the television or radio, or go to a quiet room and close the door if necessary. Make and maintain eye contact. Place oneself at the same level as the person with Alzheimer’s disease – if the afflicted person is sitting, sit down near them so that heads are at approximately the same height. Use gestures and touch to facilitate communication, and to maintain the attention of the person with Alzheimer’s disease.

2. Do make all communications short, simple and clear

Give only one direction at a time; ask one question; convey only one idea, concept or piece of information per sentence; and then check to see if it was understood.

3. Do identify yourself to person with Alzheimer’s disease if there appears to be any doubt he or she knows who you are.

While this may not apply to immediate members of the Alzheimer’s family, until late in the disease, it may apply to more distant family members, even relatively early in the illness. It is better to have someone say “I know who you are, of course” (even if they don’t) than for that person with Alzheimer’s to be asked to interact with someone whose identity is unclear. Not only is a name helpful, but offering some additional identifying data may be a good idea, as well. “I’m your nephew Carl, your brother Fred’s son” can be a quite helpful. It is common that persons with dementia may not only recall who someone is, but even if the person with Alzheimer’s understands that the person is a member of the family, he or she may not understand how they are related,, and the generations, in particular, can become very confused. Sons are seen as brothers; sisters as aunts; and so forth. It is probably better to err in the direction of identifying oneself; the person with Alzheimer’s will usually try to act like they know who someone is, when they sense that they are “supposed” to know the individual. It can be confusing for all concerned and it is stressful for the person who is afflicted.

4. Do call the person by name

This helps not only to get and maintain the individual’s attention;

it also emphasizes that they are the one being addressed. While that may seem obvious to the speaker, it may not be obvious to the person with Alzheimer’s disease, even if there are no other people in the room. Calling the person by name is also a way to show respect for them. Use their last name with Mr. or Mrs., rather than their first name, if that is how you would address a similar person who did not have dementia.

5. Do speak slowly

The person with dementia may take longer to accurately process and understand what is being said. Rapid-fire speech may be overwhelming to the afflicted person, and rather than picking up bits and pieces of what was said, the entire communication becomes incomprehensible.

6. Do use closed-ended questions which can be answered “Yes” or “No”

For example, ask: “Did you enjoy the roast beef and potatoes at dinner?” rather than: “What did you have for dinner?” The latter is experienced as memory test, and probably won’t be effective, whereas “Did you enjoy the roast beef and potatoes” reminds the individual and invites a simple yes or no answer, which is much easier for the afflicted person.

It does no good to try to force the individual remember something that isn’t readily available to them, although some people seem to feel this is a good brain exercise for the person with Alzheimer’s. Mostly, it is an exercise in frustration for them.

7. Do find a different way to say the same thing if it wasn’t understood the first time(s)

Usually, a simpler, more concrete statement, with fewer words will be better understood. It is important to read the face and reactions of the person with Alzheimer’s while speaking with him or her. Does the individual appear to paying attention? Are the eyes glazing over? Does he or she become restless and unsettled while being addressed? It may not be completely reliable to simply ask a person with Alzheimer’s if they understood something, as he or she will almost always answer positively whether or not that was the case. In addition, it can be demeaning to the individual, whether or not the communication was comprehended. A better technique when one wants to be certain that a message is understood is to ask the individual to repeat it back, “just to make sure I was clear”. This seems less like a test of the memory of the person with Alzheimer’s, and more a test for the speaker, which is certainly better.

8. Do use distraction, partial truths, or even “fiblets” when necessary, if telling the whole truth will upset the person with dementia.

For example, in answer to the question, “Where is my mother?” it sometimes might be better to say: “She’s not here right now” rather than “She died twenty years ago”.*****

Very understandably, many people have trouble with this approach. They have never told a lie to their mother or spouse and find it very difficult to do so now. For those who can’t bring themselves to be dishonest, simply avoiding and changing the subject as fast as possible may be the best approach, although that is sometimes not successful. While honesty is generally the correct way to handle all interactions, there are times when “situational ethics” seem to apply. What is the overall goal at this point? Taking into account someone’s illness, the most important goal may well be to avoid unnecessary stress, or distress, for the person, if at all possible. Some would feel that a small untruth, or partial truth – “She’s not here right now” is ethically acceptable; the end (avoiding stress and distress in the person with Alzheimer’s) justifies the means. This little lies or partial truths have been referred to as “fiblets” – little fibs that are acceptable in the context of the bigger picture.

9. Do use repetition as much as necessary

Be prepared to say the same things over and over because the person with dementia can’t recall them for more than a few moments at a time.

One of the more frequent features of living with someone with Alzheimer’s, and a common source of stress, is repetitiveness. The person with Alzheimer’s will ask the same question, over and over, because he or she can’t remember having asked it before, or can’t remember the answer, or both. This seems to occur with greater intensity when the particular event being questioned is one that causes some anxiety, in the first place. It may be that the anxiety over “who is coming for dinner tonight” may cause the forgetting to happen even more rapidly.

Repetitiveness is a core feature of Alzheimer’s disease, but when it intensifies, it might be helpful for the family member to say something reassuring, such as “The Smiths are coming. They are our old friends and they only plan to stay a short while”. It is a very caregiver who doesn’t ever get somewhat annoyed after being asked the same question a dozen times in the course of an hour or two. It is necessary for the caregiver to understand the reasons for the repetitiveness - it is caused by the impairment in recent memory, which is a core symptom of Alzheimer’s disease. The individual is not doing it “on purpose”; most of the time the person with Alzheimer’s is completely unaware of the fact they are being repetitive, although occasionally he or she will have an awareness that they have asked the same question before, but can’t recall the answer.

Sometimes it is helpful to write down the answer to the frequently repeated question, and have the person keep it with them. “The Smith’s are coming at 6 o’clock” with a drawing of a clock, the hands pointing to six, might be useful for some. However, other afflicted individuals may not be able to remember to look at the paper, or to realize that it applies to the question they have been repetitively asking.

10. Do be aware that the tone in which something is said may be as important or more important- than the actual content.

As discussed above, although people with Alzheimer’s disease frequently lose the ability to comprehend speech, they generally maintain a keen ability to read nonverbal communication. This includes body language, facial expressions, and the tone of the voice. The ability to read and respond to these nonverbal elements of communication is greatest, of course, with members of the Alzheimer’s family. Even late in the disease, the person with Alzheimer’s seems quite aware of whether a family member smiles or not; and whether they speak in a soothing, calm, pleasant tone, or an impatient, irritated one, even if they understand nothing of the content. It is critical for the Alzheimer’s family members to be very aware of the importance of these aspects of communication, which convey emotions more than ideas or other content.

DON’T:

1. Don’t ever say:

“I just told you that!”

“Do you remember?”

“Did you forget…?”

“How could you not know that??

“Try to remember!”

It does not help the situation to make this type of remark to the afflicted person who has forgotten something. These comments often are made as a way for the family member to express his or her frustration or anger about the forgetting. While that may be very understandable, it is destructive, in that it can only serve to make the person with Alzheimer’s feel worse about their deficit.

The final statement, “Try to remember!” is futile. Once something is forgotten, no amount of effort is likely to bring it back. Certainly the pressure created by such a comment will make someone less likely, not more likely to recall whatever it was that was forgotten.

2. Don’t ask questions that directly challenge short term memory.

Don’t say, “Do you remember what we did last night?” because the honest answer will likely be “no”, and this may be humiliating for the person with dementia, after they try unsuccessfully to guess the answer. Similarly, “Do you remember me?” queried by the well-meaning family member visiting from out of town is better replaced with “I’m your nephew Carl, your brother Fred’s son”, as mentioned above.

3. Don’t talk in paragraphs.

People with Alzheimer’s disease are often unable to follow a complex set of ideas. It is best to present just one idea at a time; one noun and one verb in each sentence is usually enough for the person with Alzheimer’s disease. After giving this information, the speaker should pause, allowing time for processing and possibly checking to see if the ideas were understood before continuing.

4. Don’t say anything that points out the person’s memory difficulty.

Avoid remarks like: “I just told you that” or “We already talked about that” – just repeat it again (and again). Exasperated family members will make this type of comment as a way of expressing their frustration; of course it is not at all helpful to the person with Alzheimer’s, and only increases their sense of incompetency.

5. Don’t talk in front of the person as if he or she were not present.

Always include the person with dementia in any conversation when they are physically present. As noted above, the afflicted individual may comprehend much more than is apparent and more than he or she is able to express. Whether or not the words are understood, though, the emotional tone of the conversation is likely to be. Equally importantly, talking about someone who is present as if they are not in the room is demeaning and further reduces the individual’s sense of self. Even if there is little chance that much is being understood, it is important to try to include the afflicted individual in any conversation. Making eye contact with the person with Alzheimer’s, even while talking with a third person, shows respect for him or her. And periodic comments such as “How does that sound to you?” directed to the afflicted person can help him or her feel a part of the conversation.

6. Don’t use lots of pronouns.

A sentence such as “Mary went to meet her sister at the train, but when she got there, she had already left” can be unclear who did what. “Mary went to meet her sister Susan at the train, but when Mary got there, Susan had already left” is better, even if to someone not demented the meaning is clear.

7. Don’t use slang, unfamiliar words, or jargon.

The latest expressions in common parlance may not be understood by the person with dementia. “We will have dinner every night at six, going forward” is more confusing than “after tonight, we will have dinner at six every night”. Similarly, expressions like “at the end of the day” or “the roll out will be next week” should be avoided unless they refer to a specific time in the day, or something that is actually on wheels.

8. Don’t use patronizing language or “baby talk”.

Even very demented persons are sensitive to being “talked down” to or patronized, and will feel offended, angry or hurt. An interesting study performed in a nursing home a number of years ago focused on the communication styles of nurses’ aides caring for significantly demented residents. Interactions between the aide and the person with dementia during times of daily ADL care were videotaped and analyzed according to the style of the aide’s verbal interaction with the demented resident. Also examined was the degree of resistance to daily care that was manifested by the residents. Although a small study, the findings were revealing: those aides who spoke in a normal tone of voice to their residents encountered the lowest level of resistance to care; those aides who performed their tasks in silence – did not verbally interact with the resident at all – encountered an intermediate amount of resistance; and those aides who spoke to the residents in a sing-song, childlike tone, akin to “baby talk” encountered the greatest degree of resistance to care. Thus even individuals who had significant cognitive impairments were able to tell when they were being patronized, and reacted negatively to this.

9. Don’t use sarcasm, irony, or similar forms of banter

This kind of humor can easily backfire and cause hurt or confusion. Although the family member may have only the best intentions, attempts at sarcasm or other biting forms of humor can easily be misunderstood and can cause the person with Alzheimer’s to feel that he or she is the butt of the joke. A family member who enjoys this form of banter should practice it with someone other than the afflicted member.

10. Don’t be impatient.

If you ask a question, wait for a response. Give the person plenty of time to process your question, and formulate a response. Trying to speed up the person with Alzheimer’s disease is almost never successful, whether in conversation or in almost any other activity.

2012-02-12T14:03:00.002-05:00

Obama Administration Makes Greater

Investment in Alzheimer's Research

Megan Brooks (Medscape Medical News)

February 7, 2012 — The Obama administration today announced a commitment of $156 million over the course of the next 2 years to combat Alzheimer's disease, including making $50 million immediately available to the National Institutes of Health (NIH) for research to identify effective treatments, delay disease progression, and ultimately prevent Alzheimer's altogether.

"In addition, the Fiscal Year 2013 budget to be released next week will include $80 million dollars in new research funding," US Department of Health and Human Services Secretary Kathleen Sebelius said today during a media briefing at the National Press Club.

"Altogether, the Fiscal Years 2012 and 2013 investments total $130 million in new Alzheimer's research funding over 2 years, more than a 25% increase over the current annual Alzheimer's research investment," she said. The initiative also includes an additional $26 million in caregiver support, provider education, public awareness, and improvements in data infrastructure.

Alzheimer's disease is "quickly becoming one of our nation's most critical health challenges," Sebelius said. As many as 5.1 million people currently suffer from the disease, and that number "could double or more by 2050," she said, with a "steep" economic price.

"We can't wait to confront the growing threat that Alzheimer's disease poses to families and our nation as a whole. The time for bold action...is right now," she said.

In an interview with Medscape Medical News after the briefing, Alzheimer's Association President Harry Johns said the association "commends the administration for taking this next step on what is a path to the 2025 objective of prevention and effective treatment of Alzheimer's."

"Given these times, we certainly appreciate that the administration has identified these funds that are in the current year budget to dedicate to Alzheimer's, and funds to be budgeted in the upcoming year's budget," he added. "We do believe that ultimately it is going to take additional funds to get to the 2025 objective, but we certainly commend the administration for what they have done today."

"Time for Bold Action"

Sebelius said the investments announced today build on the "historic" National Alzheimer's Project Act, passed by Congress in January 2011 and signed by President Obama, which calls for an aggressive and coordinated national plan to fight Alzheimer's disease.

NIH Director Francis Collins, MD, PhD, said: "We at the National Institutes of Health wholeheartedly share the vision expressed [by the administration] and the sense of urgency when it comes to fighting Alzheimer's disease."

"With new insights and new technologies, our brains are getting an increasingly clear picture of our brains," he said. "We are getting a far better handle on the molecular basis of Alzheimer's disease, providing real hope for developing new and targeted approaches to treatment and prevention."

"Thanks to the new infusion of funds announced today, I think Alzheimer's research is poised for some great discoveries," Dr. Collins added. "The research supported by these funds will make a difference in many key areas."

These areas, he said, include, "first, application of comprehensive DNA sequencing to identify additional gene variants that play a role in the various forms of the disease and in protecting against the disease; second, the development of new cell-based models of Alzheimer's disease that will enable us to screen hundreds of thousands of molecules for their potential as therapeutic agents; and third, the testing of new therapies in people at high risk for Alzheimer's disease."

2012-02-03T17:34:00.000-05:00

from:

Caregivers need to be cared for too

Dear Amy: My wife and I retired last year. We moved my wife's mother, age 95 and with dementia, from another state into an assisted living place near our home.

Since then our life has changed dramatically. I want to be helpful and supportive of my mother-in-law's care, but it has completely taken over our lives.

My wife is there anywhere from one to three times a day, and I visit about every other day and have her over to visit us often.

We recently went on our first vacation in a long time, and when we returned my mother-in-law informed us that we were never to do that again. I'm afraid that my wife thinks the same.

Her assisted living place does a fine job, but my wife says they don't do everything she would do.

My wife's temper seems to be directed at me most of the time, and I don't feel that is fair to me or our marriage.

I know she is under a lot of stress caring for her mother on a daily basis, but should our marriage be put on hold until this family member is gone? This does not seem healthy to all involved. Is there a book I can read to help me understand our situation a bit better?

— Very Sad Husband

Dear Husband: You have perfectly described the toll that caring for an elderly parent takes on the entire family.

If your wife doesn't figure out how to pace herself, your relationship and her physical and emotional health will suffer.

I agree with you that you both must pay attention to your marriage, not only for your own sake but also because the strength of this relationship will help to bolster her at this difficult time.

You need to be extra patient and loving. Understand her anger, but ask her to express it appropriately. Take care of your wife — and encourage her to take good care of herself. If she managed to visit her mother one less time each day, she could take a yoga class, go swimming or just spend some time winding down.

A caregivers support group would be extremely valuable to both of you, as would a weekly date night, where you visit with her mother together and then go out afterward.

Read "The Emotional Survival Guide for Caregivers: Looking After Yourself and Your Family While Helping an Aging Parent," by Barry J. Jacobs (Guilford, 2006).

2012-02-02T08:57:00.000-05:00

From The New York Times

February 1, 2012

Path Is Found for the Spread of Alzheimer’s

By GINA KOLATA

Alzheimer’s disease seems to spread like an infection from brain cell to brain cell, two new studies in mice have found. But instead of viruses or bacteria, what is being spread is a distorted protein known as tau.

The surprising finding answers a longstanding question and has immediate implications for developing treatments, researchers said. And they suspect that other degenerative brain diseases like Parkinson’s may spread in a similar way.

Alzheimer’s researchers have long known that dying, tau-filled cells first emerge in a small area of the brain where memories are made and stored. The disease then slowly moves outward to larger areas that involve remembering and reasoning.

But for more than a quarter-century, researchers have been unable to decide between two explanations. One is that the spread may mean that the disease is transmitted from neuron to neuron, perhaps along the paths that nerve cells use to communicate with one another. Or it could simply mean that some brain areas are more resilient than others and resist the disease longer.

The new studies provide an answer. And they indicate it may be possible to bring Alzheimer’s disease to an abrupt halt early on by preventing cell-to-cell transmission, perhaps with an antibody that blocks tau.

The studies, done independently by researchers at Columbia and Harvard, involved genetically engineered mice that could make abnormal human tau proteins, predominantly in the entorhinal (pronounced en-toh-RYE-nal) cortex, a sliver of tissue behind the ears, toward the middle of the brain, where cells first start dying in Alzheimer’s disease. As expected, tau showed up there. And, as also expected, entorhinal cortex cells in the mice started dying, filled with tangled, spaghettilike strands of tau.

Over the next two years, the cell death and destruction spread outward to other cells along the same network. Since those other cells could not make human tau, the only way they could get the protein was by transmission from nerve cell to nerve cell.

And that, said Dr. Samuel E. Gandy, associate director of the Alzheimer’s Disease Research Center at Mount Sinai School of Medicine in New York, was “very unexpected, very intriguing.”

Although the studies were in mice, researchers say they expect that the same phenomenon occurs in humans because the mice had a human tau gene and the progressive wave of cell death matched what they see in people with Alzheimer’s disease.

One study, by Karen Duff and Dr. Scott A. Small and their colleagues at the Taub Institute for Research on Alzheimer’s Disease and the Aging Brain at Columbia University Medical Center, was published on Wednesday in the journal PLoS One. The other, by Dr. Bradley T. Hyman, director of the Alzheimer’s Disease Research Center at Massachusetts General Hospital, and his colleagues, is to be published in the journal Neuron.

Both groups of researchers were inspired by the many observations over the years that Alzheimer’s starts in the entorhinal cortex and spreads.

But, said Dr. Small, “what do we mean by ‘spreads?’ ”

Researchers knew that something set off Alzheimer’s disease. The most likely candidate is a protein known as beta amyloid, which accumulates in the brain of Alzheimer’s patients, forming hard, barnaclelike plaques. But beta amyloid is very different from tau. It is secreted and clumps outside cells. Although researchers have looked, they have never seen evidence that amyloid spreads from cell to cell in a network.

Still, amyloid creates what amounts to a bad neighborhood in memory regions of the brain. Then tau comes in — some researchers call it “the executioner” — piling up inside cells and killing them. If some cells take longer than others to succumb to the bad neighborhood, that would explain the spread of the disease in the brain, and there would be no need to blame something odd, like the spread of tau from cell to cell.

Studies in humans, though, could not determine whether that hypothesis was correct. They involved autopsy and brain imaging studies and were “indirect and inconclusive,” Dr. Small said.

Looking at the brains of people who have died of the disease, Dr. Duff said, is like looking at a wrecked car and trying to figure out the accident’s cause. Faulty brakes? Broken struts?

The question of which hypothesis was correct — tau spreading cell to cell, or a bad neighborhood in the brain and cells with different vulnerabilities to it — remained unanswerable. Dr. Hyman said he tried for 25 years to find a good way to address it. One of his ideas was to find a patient or two who had had a stroke or other injury that severed the entorhinal cortex from the rest of the brain. If the patient developed Alzheimer’s in the entorhinal cortex — and it remained contained there — he would have evidence that the disease spread like an infection. But he never found such patients.

The solution came when researchers were able to develop genetically engineered mice that expressed abnormal human tau, but only in their entorhinal cortexes. Those mice offered the cleanest way to get an answer, said John Hardy, an Alzheimer’s researcher at University College London who was not involved in either of the new studies.

There is another advantage, too, Dr. Hyman said. The mice give him a tool to test ways to block tau’s spread — and that, he added, “is one of the things we’re excited about.”

But if tau spreads from neuron to neuron, Dr. Hardy said, it may be necessary to block both beta amyloid production, which seems to get the disease going, and the spread of tau, which continues it, to bring Alzheimer’s to a halt.

He and others are also asking if other degenerative diseases spread through the brain because proteins pass from nerve cell to nerve cell.

Dr. Hardy thought he saw provocative human evidence that it might be happening in Parkinson’s disease. Two Parkinson’s patients being treated by a colleague had fetal brain cells implanted to replace dead and dying neurons. When the patients died, years later, autopsies showed they still had the fetal cells, but they had balls of a Parkinson’s disease protein, synuclein, inside. The most obvious way that could happen, the researchers reasoned, was if the toxic protein had spread from the patient’s diseased cells to the healthy fetal cells. But they could not rule out the bad-neighborhood hypothesis.

Now, Dr. Hardy said, with the mouse studies, the issue of a bad neighborhood is settled. The answer in Alzheimer’s disease, he said, “is that isn’t possible.”

“That is what is different between these papers and all the others,” Dr. Hardy said. “It isn’t a bad neighborhood. It is contagion from one neuron to another.”

2012-01-31T18:22:00.002-05:00

2012-01-31T18:17:00.001-05:00

These Boots Are Made for Tracking: GPS Technology Comes to Shoes

Published on January 30, 2012

by Lauren Goode - All Things Digital

A shoe that blends wearable comfort with GPS technology has made its way to the market. The tech-enhanced footwear is aimed at those suffering from Alzheimer’s disease and dementia whose caretakers may want to monitor their whereabouts.

The GPS shoes have a tracking device implanted in the right sole, with a GSM antenna snaking up behind the heel so that the GPS signal is not blocked by the body; the shoe also includes a USB port, primarily for charging the product’s battery.

Made by footwear company Aetrex, with GPS technology provided by GTX Corp., the shoes cost $299.99, with the added monthly cost of a tracking plan. Caretakers can opt to have the wearer’s location recorded every 10 minutes for $39.99 a month, or every 30 minutes for $35.99 a month.
Customers can visit the Aetrex Web site to purchase the shoes, set up an account for the shoes through GTX Corp. and, using Google Maps, create a “geo-fence” encompassing what’s considered a safe distance around a wearer’s house or living community. The caretaker can opt to have messages sent via email or receive simple SMS text messages on a cellphone when the wearer wanders outside of the geo-fence.

The caretaker can then access the online portal to find the wearer’s location on a Google Map. There’s also an emergency backup system the caretaker can call for additional help; that requires the caretaker to share the GPS information with the emergency-care provider.

Aetrex began planning and designing the GPS shoes two years ago; the product was certified by the Federal Communications Commission in September of last year and began shipping in late December. Only a few hundred pairs have sold so far, but Aetrex president Evan Schwartz said the companies have done little marketing at this point, and have been focused instead on a strategic rollout of the shoes.
Schwartz also said the company will begin shipping to Canada and other countries soon, and that Aetrex and GTX have struck a deal with an international SIM card provider to make the tech available internationally.
For now, Aetrex and GTX are selling the shoes directly to consumers, but they have been in talks with the Alzheimer’s Association and the Veterans Benefits Association to explore partnerships for marketing the shoes to assisted-living communities and geriatrics departments.

While the GPS shoes could give caregivers some peace of mind if a family member is prone to wandering, the concept of trackable clothing could raise questions from both a technical and legal standpoint.
Aetrex says the battery life of the shoes lasts two days on average, but the shoes would be rendered ineffective if a caretaker wasn’t around to charge them, or the wearer forgot to do so. Also, if the person monitoring the shoe-wearer opts in for more frequent pings, the battery will die more quickly. Aetrex says the GPS shoe system does send email or text notifications to remind the caretaker when the battery is getting low.

There’s also the possibility, of course, that the wearer could remove the shoes, or simply refuse to wear them.

When someone purchases the GPS shoes and goes to activate the online monitoring system, he or she has to sign off that they are a designated caregiver, and that they have the authority to monitor the wearer of the shoes and make those kinds of decisions for the wearer. But, as with many of the technologies we have at our fingertips, there is always the possibility of misuse.

A recent Supreme Court case involving law enforcement officials’ use of GPS to track a drug-trafficking suspect has also raised some questions about the rights civilians have when it comes tracking others using GPS technology (our Wall Street Journal/SmartMoney colleagues did a good rundown of some instances where it can be done legally). Stories like these indicate that we’re still in the early stages of setting privacy standards when it comes to digital tracking.

“It’s all kinds of good and bad and ugly popping up when it comes to GPS tech these days, and that’s definitely a concern,” Schwartz said. “There are enough people who make jokes about tracking a spouse, or what if you threw the shoe in the trunk of someone’s car and they never know it’s being used for that, that sort of thing.”

“But at the same time,” he added, “this shoe has been designed to serve a purpose, and it’s to help caregivers, so we have a hard time believing someone would abuse this.”

2012-01-30T13:01:00.001-05:00

Johns Hopkins Memory Alerts
Research Shows that Having a Purpose in Life May Lower Alzheimer's Risk

An increasing amount of research is being directed at finding ways to prevent Alzheimer’s. A recent study reported in the Archives of General Psychiatry (Volume 67, page 304) suggests that feeling like one has a purpose in life is linked to a reduced risk of Alzheimer's disease and mild cognitive impairment (MCI) among older people.

Over 950 participants, average age 80, from the Rush Memory and Aging Project were evaluated for up to seven years; none showed any evidence of Alzheimer’s at the onset of the study. The degree to which each participant felt he or she had some purpose in life was assessed on a questionnaire. Other variables, like depressive symptoms, size of social networks and education level, were recorded.

During the follow-up period, 155 participants developed Alzheimer's disease. Those who had a strong sense of purpose in life were 2.4 times more likely to remain free of Alzheimer's than those who did not. They also had a reduced risk of MCI and a slower overall rate of cognitive decline. The associations persisted after controlling for other variables.

The researchers note that having a purpose in life is a factor that can be modified, and strategies that help older people engage in meaningful, goal-directed activities may result in better physical and mental health and longevity.

2012-01-28T20:53:00.003-05:00

We celebrated the first anniversary of Memory Cafe today. The day began with an excellent breakfast, as usual, made by our terrific partners from Alpha Xi Delta Sorority at Dartmouth.

Preparing breakfast

Julia - First time at Memory Cafe!

Schedule for the day. We didn't get to the interviews. Next time!

Among other announcements, we were pleased to tell the group about the Covered Bridges Half-Marathon, and to introduce Rachel Sarnoff, one of our Alpha Xi Delta students, who will be running in the race, representing Memory Cafe.

Jane Lemire, who works for Dartmouth Athletics, has formed Team Alzheimer's and has raised money for a number of important Alzheimer's causes over the past several years. She has been extremely generous with her donations to Memory Cafe. You may remember Jane's visit to Memory Cafe several months ago. See above.

We distributed pledge forms and asked that Memory Cafe attendees consider making a pledge to support Rachel's running in the CBHM. Pledges can be sent directly to Jane (her address is on the pledge sheet) or given to me at the next Memory Cafe. Thank you!

Here are two photos of Rachel, serving breakfast and enjoying herself later at the meeting:

Rachel serving the pancakes.
They were terrific!

Doris, Ad and Rachel enjoying a light moment

June has been to every Memory Cafe since we began last January

Alana and Willy have come down regularly from
St Johnsbury for our meetings

Anne

Deborah and Doris.
Deborah is one of Ad's TALES students

Lorraine and Carl - first time at Memory Cafe - Welcome!

Ernie commenting on the first year of Memory Cafe.
Ernie brought his daughters for the first time.
We were glad to meet them!

Jenny, Allison, Lena (partially hidden), Julie, and Kim
Listening to participants offer their reflections on the
first year of Memory Cafe

A Look Back at the First Year of Memory Cafe:

We had a very good discussion. Most people had positive things to say about their experiences this first year at Memory Cafe. Common themes expressed were the value of recognizing that there are others with you in this struggle with Alzheimer's, and that it is not a problem that should be faced alone - and doesn't need to be. Memory Cafe is seen as a safe haven - it is good to be with people who are in the "same boat". It has been gratifying to see how people have opened up over the course of the year, sharing more and more as time goes on. People have enjoyed the opportunity for socialization. It is very gratifying to see that those with Alzheimer's look foreward to coming to the meetings.

Participants enjoy the food and entertainment. They particularly like having the students as part of the experience, feeling that "they lift this up". People enjoy the socialization, meeting people, the comraderie, getting to know new people. One participant commented on enjoying looking at the facial expressions of the others. Several participants emphasized the positive focus on the "here and now"; on what people with Alzheimer's can continue to do, rather than the problems they have. One indicated that it was "doing the best we can with what we've got" - focussing on the positives, or as we discussed a number of months ago, making lemonade out of lemons.

As for the future, most people suggested we continue as we have been doing. We should continue with the variety in entertainment we have been having, but with a focus on music as music - more than cognitive games or exercises - is something that everyone can enjoy. Another participant mentioned the importance of the core of stability that the program offers: keeping the time and structure the same is good for persons with Alzheimer's.

Negatives: not too many were mentioned. Some found the situation initially uncomfortable, as a new social experience, but that has certainly lessened. One participant mentioned that cognitive challenges - word search puzzles and the like - may be difficult or frustrating for some of the participants. And another individual mentioned that she didn't like having her picture taken.

Why do we take pictures?

We will never publish a photo of someone on the blog without their signed permission. But we do believe, strongly, that it is important to show to the world (at least that part of the world that reads our blog on the internet!) the people with Alzheimer's who come to our program, and their devoted family members and caregivers. It is our strong feeling that the disease, and people with it, should not be hidden, but should be as open about it just as if they had a broken leg, or some other illness. It is time for the stigma surrounding Alzheimer's disease to go away - this stigma just adds to the burden, which is already considerable. This is a critical part of the mission of Memory Cafe - to decrease the stigma associated with Alzheimer's disease. Yet we recognize that not everyone is on the "same page" in regard to this, and as indicated above, if someone doesn't wish to have their photos placed on the blog, we will certainly honor that.

A common theme expressed regarding how Memory Cafe has changed people's attitudes about Alzheimer's was the importance of recognizing that people in different stages of the disease can still be involved and functional, and have fun.

Note:

Our students will be interviewing individual families in more depth over the next few months, and we begin to formally gather our impressions of the Cafe. We plan to write a report of Memory Cafe to hopefully be published in a scholarly journal. Of course, we will share that will all of our participants.

~~~

After a short break, we had a terrific performance from the Suite Notes, a recorder ensemble (plus one bassoon!) They played a few unfamiliar pieces, and lots of very familiar songs which the group enjoyed singing along with. Special thanks to Millie, seen below on the right, for arranging to have the Suite Notes perform for us. We were very impressed by her excellent recorder skills!

Entertainment Scheduled:

See you next month!

2012-01-27T20:37:00.000-05:00

from:
http://www.best-alzheimers-products.com/index.html
click here

So long as the memory
of certain beloved friends
lives in my heart,
I shall say that life is good.

~ Helen Keller

Memory, Reminiscence,

and Alzheimer's Disease

It is a funny thing about Alzheimer's that memories are lost in reverse order; memories formed recently are more fleeting than those from many years ago. Alzheimer's disease starts in the hypothalamus, the region of the brain responsible for putting experiences into memory. When the hypothalamus is damaged, recent experiences never have a chance to become memories. Not until much later in the disease's progression does it affect the regions in the brain in which older memories are stored, and so those memories are available even into later stages of the disease. This phenomenon is responsible for much of the behavior and the symptoms commonly associated with Alzheimer's, and we need to consider its effects when communicating with and selecting activities for people affected by the disease.

Make Yesteryear, not Yesterday, the Focus of Conversation
As caregivers, we need to learn new communication skills; otherwise our attempts at conversation might be a cause of frustration rather than comfort. Steer clear of talking about recent events, those things that rely on short-term memory.
Many people with progressive memory disorders are much more comfortable talking about earlier memories. Because the area of the brain that stores memories long term is affected later in the disease's progression, the affected person will know more about her life when she was 40 years younger than she knows about what has happened this week. A person with Alzheimer's disease, for example, might have a detailed and lucid conversation about something that happened after the war (World War II or the Korean War) than what he or she had for breakfast, or experienced at the theater the night before.
Reminiscence Therapy
Reminiscing and reminiscence therapy involve reaching the memories that reside in these still viable regions of the brain. There are many ways to encourage these memories, and you should. They can be comforting, even therapeutic. A study published in the June 2007 issue of Geriatrics and Gerontology International concluded that a reminiscence group program was an effective way to enhance the cognitive capacity of people with Alzheimer's disease and vascular dementia as well as their ability to participate in normal activities of daily living. A summary of existing data, including studies published in professional journals, and interviews with specialists, concluded that the general mood and cognition improved in subjects with dementia who participated in some form of reminiscence therapy.
In a strict sense, reminiscence therapy involves discussing and sharing memories, reviewing and evaluating those memories, and re-capturing the emotions and feelings that are an integral part of those memories. This can be done in a one-to-one situation, or in groups. However, when reminiscing with someone with dementia it is better to take a less formal approach, and one-to-one is preferable to group reminiscence. The evaluation and review can be eliminated, and focus should be on the emotions inherent in the memories. The activity should be enjoyable and unthreatening, and talking and sharing is not even a strict requirement. Never try to force the conversation, but you may have to lead it by making suggestions, like, "Do you remember what you were doing when Neil Armstrong landed on the moon?" Props or aids are also a good way to initiate and sustain the process.
Prompts and Aids for Reminiscing
Music is one of the most popular stimulations used while reminiscing. Music can be used in two ways. A song might trigger memories of things a person was doing forty, fifty, or even sixty years ago. He might re-live a date that he was having with the girl that would later become his wife, or remember high school days and school dances. That is the essence of reminiscing. It not only exercises the brain's memory mechanism, reminiscing also provides positive emotional feedback, which improves the quality of life. Petr Janata at the University of California, Davis, has found a direct neurological connection between music and the memories that the music triggers. Music causes activity in the same part of the brain in which the corresponding memory is processed.
The HBO documentary The Alzheimer's Project, quite literally follows Woody as he wanders from place to place around the community in which he lives. Never content to stay put, he finds a place to sit, and before he has had a chance to settle in is wondering where he should go next. Told the basic rules of baseball, Woody cannot name the game, yet he whistles and sings incessantly. In fact, he occasionally sings with an acapella group, The Grunions, that he belonged to for many years, and will even sing fairly complicated solos. He never flubs the lyric, and it is quite obvious that he is enjoying himself immensely while performing.
The more familiar the music is, the stronger the emotional response; but even unfamiliar music seems to aid reminiscence. As reported in The Epoch Times; Mar 19, 2008 Singer-songwriter Jason Soudah was asked to provide music to accompany personal films made specifically to trigger reminiscences. He played music to fit the scenes on the film, music that was "soothing and dreamy". The combination of music with the personal memorabilia increases the effectiveness of the visual reminders. This is part of the reason that our nature and ambient DVDs are so effective and well liked. Most are accompanied by music similar to what Soudah composes for the films and we offer a broad variety: there is a setting or a subject that almost everyone will find memorable including forests, oceans, flowers, butterflies, beaches, and many more.
Pictures that bring back memories are another excellent aid to the reminiscence process. Photographs of family and friends and anything else in one's personal history are obvious choices, but any picture that elicits a memory of something in the past is beneficial. The picture at the top of this page shows Bernice enjoying a photo album of our family, which is her family, for all intents and purposes. She recognizes and loves asking questions about our children. "How's Jackie?" she'll ask, taking them in chronological order. "She's fine," Holly will answer. "And she is expecting a baby," she'll add. "She IS?!" is always her response to that. Then, "Is she old enough?" "Yes, Holly will tell her. "She's 27." "She IS?!" once again. After her surprise settles down she will ask about Abby and Christy, and we'll get her up to date on them. Invariably she will then ask, "And how's Jackie?" and the whole conversation will be repeated, almost verbatim.
Photographs are not the only pictures that interest Bernice. She loves to look at her reprints of old Sears Roebuck Catalogs. Bernice worked for Sears when she was younger, teaching women all over the country to sew. She loves to point out the dresses and suits that she designed. We, of course, don't challenge that. It doesn't hurt her to think so. She also loves her picture books of babies and animals. Rachael Hale has several very fun books that show animals in different poses and settings, and Ann Geddes has become somewhat famous posing babies in colorful and interesting clothes. Some of the coffee table books have beautiful pictures of things past: old cars or airplanes, art and architecture, nature and geography, cities and countries, and countless other subjects. These can often be found deeply discounted at the larger bookstores.
All sorts of sensory stimulation can prompt reminiscences. This is especially true of smells. We have all been transported to a time in our past by the smell of a certain food wafting from the kitchen, or the scent of a certain flower. The fact that smells have a particular ability to transport us into our past is well known by literary figures like Poe and Hesse, as seen in their respective works Marginalia and The Glass Bead Game. Our new game, Follow Your Nose inspires reminiscences through smell as it stimulates cognitive processes. See details in the right column of this page and follow a link to the store. If your mother was a cook or baker, use spices to inspire memories. If your dad enjoyed woodworking, the smell of different woods will remind him of that, though these smells might be more difficult to collect.
Create a Memory Book
A memory book is simply a way to organize memories and mementos — photographs, stories, genealogy, significant documents, etc. Creating and completing such a book can be an invaluable life review, especially as an activity for people in earlier stages of any progressive cognitive disorder. Later it can be used over and over again to stimulate reminiscences. There are several good books that have been designed to prompt and contain memories of one's life. They generally have questions about genealogy, friends, marriage and all of those things that make up personal history, and provide space to write answers as well as post photographs and other memorabilia.
Blank journal books come with a large variety of decorative covers and are available at most book stores. Use one of these to create your own memory book, or use a loose-leaf binder that will allow you to add and re-arrange pages. Connie Lucas, Program Specialist at the Alzheimer's Association, Greater Iowa Chapter, offers guidelines for creating such a book. Use Connie's suggestions, then follow your own creativity and intuition to create a truly unique and personalized book of memories that will be enjoyed by the entire family.

2012-01-26T18:28:00.001-05:00

This Saturday

January 28

10 AM - Noon

Aging Resource Center

Join Us!

2012-01-26T18:11:00.004-05:00

Mild Memory Problems May Be More Common in Men

By Denise Mann
WebMD Health News

Jan. 25, 2012 -- Men may be more likely than women to experience mild memory or cognition problems. This condition, called mild cognitive impairment (MCI), often comes on before full-blown dementia.

More than just “senior moments,” MCI symptoms may include difficulty remembering recent events and/or new information, as well as problems with language, thinking, or judgment that are greater than age-related changes but not reaching dementia. People with MCI are at greater risk for developing dementia, but not all will develop dementia.

The new study included 1,450 people from Olmsted County, Minn., who were aged 70 to 89 and free of dementia when the study began.
Participants took mental tests every 15 months for about three years and were interviewed about their memory. By the end of the study, 296 people developed MCI.

The rate of developing MCI was higher among men than women. Risk of MCI was also increased among people who were less educated and those who were single, the study showed.

Exactly why men seem to develop MCI more than women do is up for debate. “It is possible that women develop MCI later than men and that when they do, it is more severe, so we may miss it because they progress more rapidly to dementia,” says study author R.O. “Rosebud” Roberts. She is an epidemiologist at the Mayo Clinic in Rochester, Minn.

Some of the strongest risk factors for MCI are the same as those for heart disease -- namely high blood pressure, diabetes, and obesity. “These occur earlier in men than women,” Roberts says.

In light of the new findings, “doctors should have a higher degree of suspicion for MCI in men,” she says.

Prevent MCI and Maybe Dementia, Too

Not everyone with MCI progresses to full-blown dementia, Roberts says.
“People with MCI may be cognitively normal at another stage, they may still have MCI, or they may progress to dementia,” she said. The majority will continue to display MCI symptoms or develop dementia.

“Once it has started, we don’t have any treatments for MCI,” she says.
As such, a lot is riding on preventing MCI, and hopefully dementia, too. “We need to start our efforts to reduce obesity, diabetes, and high blood pressure earlier,” Roberts says. These risks are usually established by middle age.

The findings are surprising, says Sam Gandy, MD, PhD. He is the Mount Sinai chair in Alzheimer's disease research at Mount Sinai School of Medicine in New York City. “The prevalence of Alzheimer’s disease in women is greater, largely because of longevity,” he says. That’s why, “most people would have guessed equal incidence of MCI to be more in women.” Alzheimer's disease is the most common cause of dementia in people aged 65 and older.

The "why" part is not clear. “Perhaps men remain at the MCI stage longer than women,” Gandy says in an email. But “if we could understand the conversion of normal aging to MCI or of MCI to dementia, we would be better able to treat it.”

2012-01-24T08:56:00.004-05:00

From The New York Times

January 18, 2012, 12:01 AM

How Exercise May Keep Alzheimer’s at Bay

By GRETCHEN REYNOLDS

Alzheimer’s disease, with its inexorable loss of memory and self, understandably alarms most of us. This is especially so since, at the moment, there are no cures for the condition and few promising drug treatments. But a cautiously encouraging new study from The Archives of Neurology suggests that for some people, a daily walk or jog could alter the risk of developing Alzheimer’s or change the course of the disease if it begins.

For the experiment, researchers at Washington University in St. Louis recruited 201 adults, ages 45 to 88, who were part of a continuing study at the university’s Knight Alzheimer’s Disease Research Center. Some of the participants had a family history of Alzheimer’s, but none, as the study began, showed clinical symptoms of the disease. They performed well on tests of memory and thinking. “They were, as far as we could determine, cognitively normal,” says Denise Head, an associate professor of psychology at Washington University who led the study.

Next they genetically typed their volunteers for APOE, a gene involved in cholesterol metabolism. Everyone carries the APOE gene, but scientists have determined that those who have a particular variation of the gene known as e4 are at 15 times the risk of developing Alzheimer’s compared with those who do not carry the variant. The report also noted that carriers tend to show symptoms of dementia at a younger age, beginning in their late 60s, on average, instead of in their early 80s for people without the variant.The volunteers had not had their brains scanned, however, so the Washington University scientists began their experiment by using positron emission tomography, an advanced scanning technique, to look inside the volunteers’ brains for signs of amyloid plaques, the deposits that are a hallmark of Alzheimer’s. People with a lot of plaque tend to have more memory loss, though the relation is complex.

Fifty-six of the volunteers, of various ages and both sexes, turned out to be positive for APOE-e4. (A family history of Alzheimer’s may suggest that someone is a carrier for the e4 variant, Dr. Head says, but it also may not; there are probably many other, still-unknown genetic causes of the disease, she says.)

Finally, the scientists asked the volunteers to fill out detailed questionnaires about their exercise habits during the past 10 years. Recently, many studies have looked at whether being active can lessen someone’s risk for Alzheimer’s, but the results have been inconsistent, with some studies, in both animals and people, suggesting that regular exercise has a protective effect and others finding little discernible benefit.

One reason for the inconsistency, Dr. Head suspected, might be that many earlier studies did not differentiate between people with the e4 variant and those without, and each group, at least potentially, could respond differently to exercise.

And that certainly proved to be the case in this study. For the group as a whole, exercise provided marginal benefits. The volunteers who reported walking or jogging often — meeting (or, in rare instances, exceeding) the American Heart Association’s exercise recommendation of 30 minutes of moderate or vigorous activity five times a week — had fewer amyloid plaques than the volunteers who reported almost never exercising. But the preventive value of the exercise was small, barely reaching the level of statistical significance.

That situation changed, however, when the scientists examined the results for people with the e4 gene variant. Most of those who carried the APOE-e4 gene displayed much larger accumulations of amyloid plaques than those without it.

Unless they exercised. The carriers of the gene who reported walking or jogging for at least 30 minutes five times a week had plaque accumulation similar to that of volunteers who were e4-negative. In essence, the APOE-e4 gene carriers mitigated their inherited risk for developing Alzheimer’s by working out. Or, as the study authors wrote, a “physically active lifestyle may allow e4 carriers to experience brain amyloid levels equivalent to e4-negative individuals.”

“The good news is that we found that activity levels, which are potentially modifiable, could have an impact” on plaque accumulation — and presumably on the course of Alzheimer’s — in people with a genetic predisposition to the condition, Dr. Head says.

But the findings came with a downside, too. An overwhelming majority of the people in the study were sedentary, and for them, an inactive lifestyle seemed to be accelerating the accumulation of amyloid plaques. Those with the e4 variant who rarely or never exercised had the most plaques, putting them at heightened risk for the memory loss of Alzheimer’s in the years to come.

At the moment, it’s not known whether beginning to exercise after plaques have started to build up might alter that outcome, Dr. Head says. But, she continues, experiments in mice bred to develop memory loss “have shown that elderly animals that began a running program benefited.” They experienced less dementia than mice that didn’t run.

Still, countless questions remain about the interactions of exercise, genetics and Alzheimer’s, including why the protective benefits of exercise in this study seemed substantial only for those with the gene variant. “It is looking as if there is some still-unexplained biochemical interplay between being e4-positive and inactive,” Dr. Head says, “which heightens risk” for the disease.

“But that doesn’t mean that everyone shouldn’t exercise,” she continues, regardless of whether they suspect they have a genetic risk for dementia. “There are so many benefits to exercise,” she says, “and one may be that it helps the brain” to defend itself against the slow leaking away of memory.

2012-01-23T22:52:00.001-05:00

From Eureka Alert:

Study Suggests Association Between Cognitive Activity and Brain Protein Related to Alzheimer's Disease

CHICAGO – Individuals who keep their brains active throughout life with cognitively stimulating activities such as reading, writing and playing games appear to have reduced levels of the β-amyloid protein, which is the major part of the amyloid plaque in Alzheimer disease, according to a report published Online First by Archives of Neurology, one of the JAMA/Archives journals.

The recent development of the radiopharmaceutical carbon 11-labeled Pittsburgh Compound B ([ 11 C]PiB) has made it possible to image fibrillar (fiber) forms of the β-amyloid (Αβ) protein.

In the study by Susan M. Landau, Ph.D., University of California, Berkeley and the Lawrence Berkeley National Laboratory, and colleagues, [ 11 C]PiB PET (positron emission tomography) and neuropsychological testing were performed in a sample of cognitively normal older participants. Αβ was characterized as mean cortical [ 11 C]PiB PET uptake and was examined in healthy older people and compared to young participants and patients with Alzheimer disease (AD). Participants completed an interview about various lifestyle practices, including how frequently they participated in cognitively engaging activities at different phases throughout life (from age 6 to their current age.)

"We report a direct association between cognitive activity and [ 11 C]PiB uptake, suggesting that lifestyle factors found in individuals with high cognitive engagement may prevent or slow deposition of β-amyloid, perhaps influencing the onset and progression of AD," the researchers write.

The study included a volunteer sample of 65 healthy older people with a mean (average) age of 76.1 years plus 10 patients with AD (mean age 74.8 years) and 11 young controls (mean age 24.5 years).

The results indicate that greater participation in cognitively stimulating activities throughout a person's life, but especially in the early and middle years, appears to be associated with reduced [ 11 C]PiB uptake. Older people with the highest cognitive activity had [ 11 C]PiB uptake comparable to young people in the control group, whereas those with the lowest cognitive activity had [ 11 C]PiB uptake comparable to patients with AD.

Although greater cognitive activity was associated with greater physical exercise, exercise was not associated with [ 11 C]PiB uptake, the authors note. The researchers suggest that the tendency to engage in cognitively stimulating activities is likely related to a variety of lifestyle practices that have been implicated in other studies showing a reduced risk of AD-related pathology.

"It is unlikely that our results reflect a single unitary cause of AD, which is a complex disease with many potential pathogenetic processes. Furthermore, cognitive activity is just one component of a complex set of lifestyle practices linked to AD risk that may be examined in future work," the researchers conclude. "However, the present findings extend previous findings that link cognitive stimulation and AD risk (an indirect downstream effect of Αβ) by providing evidence that is consistent with a model in which cognitive stimulation is linked directly to the AD-related pathology itself."

2012-01-17T21:49:00.003-05:00

2012-01-09T18:56:00.001-05:00

2012-01-09T08:36:00.000-05:00

New Support Group

Schedule

each support group now

meets twice a month

Daytime Support Group for All Caregivers:

Second and Fourth Fridays of Every Month

1 PM - 2 PM

DHMC - Area 4H Health Education Center.

Support Group Facilitator: Robert B. Santulli, M.D

Evening Support Group for

Adult Children of People

with Alzheimer's Disease:

First and Third Wednesdays of Every Month

5:30 PM - 6:30 PM

Facilitator: Robert B. Santulli, M.D

Dartmouth-Hitchcock Aging Resource Center

46 Centerra Parkway Lebanon, NH

Support Group Facilitator: Robert B. Santulli, M.D

~~~~~~~~~~~~~~~~~~

2012-01-09T08:27:00.000-05:00

Advice to Keep Dementia at BayPeter Rabins, MD
from Johns Hopkins Health Alerts

Recently, researchers looking into cognitive decline and dementia have made encouraging findings. Although it was believed that the adult brain could not develop new neurons (or brain cells), scientists have learned in the past decade or so that the human brain is pliable and adaptive. The brain can actually add new neurons even late in life and continually form new connections among existing neurons -- a phenomenon known as neuroplasticity.

This means that while an aging brain may have signs of damage, it can often compensate for them, at least initially. And engaging in mentally stimulating activities like reading, taking a class or playing board games is one way to bolster this process.

This compensation process depends on your "cognitive reserve," the extra, perhaps unused, amount of cognitive ability that can make up for the loss of brain functioning when your brain shows signs of dementia due to the death of cells and their replacement by beta-amyloid plaques. Genetics, early childhood stimulation and education level can influence cognitive reserve but are essentially immutable once you're an adult.

Fortunately, studies have found that you can also increase your cognitive reserve and delay the onset of dementia through a variety of intellectually stimulating leisure activities in middle and later life.

A study in the journal Neurology, for example, found that among 101 people who eventually developed dementia, those who frequently participated in one or more activities, such as reading, writing, doing crossword puzzles, playing card or board games, having group discussions or playing music experienced memory decline more than one year later than those who participated in these activities less often. These pursuits built cognitive reserve and delayed dementia as much as a higher education level did.

It's worth noting that researchers have discovered that watching television is a passive activity that doesn't really stimulate the mind at all; on the contrary, watching television is associated with an increased risk of cognitive decline. One study found that TV watchers were 10 percent more likely than nonwatchers to experience cognitive impairments over a five-year period. A possible explanation: Time spent in front of the TV means less time for the mental, social and physical activities that can help delay dementia.

2012-01-08T16:43:00.000-05:00

from:

TAD (Thoughts About Dementia) Newsletter
6th January 2012

Reminiscences, life stories
and dementia care

© Gemma M.M. Jones 2012

Everyone has a story

Formerly, the events and life stories of important, unusually gifted and wealthy people were recorded – but rarely those of the ordinary folk. Developments in psychology and other fields in the past century have provided a lens for valuing individual differences in experiences, perceptions, motivations and responses. This focus has been influential in recognizing that everyone has a unique story as well as being part of ‘shared stories’ related to extended family, culture, work and status.

There have been increasing efforts in past decades to encourage older people to record their stories, for personal, family, social, historical, and overall well-being purposes ^1-4. In 1995, the International Society for Reminiscence and Life Review was established.

Helping people with dementia tell their story

There have been concurrent efforts to reminisce, collect memories and construct the life stories of people with dementia. Various approaches and methods have been developed and continue to be explored, including, among others, Reminiscing groups, Life Stories, mini-biographies and storybooks. Such accounts can help caregivers relate to the person beyond the dementia, and, when used as an activity or care intervention, to positively stimulate people and maintain communication. Many family carers become involved in this too.

Constructing stories and life stories

like choosing beads to string

Stories can come from spontaneous reminiscences. However, compiling a life story requires a systematic effort to record a person’s biography, or editing a series of spontaneous reminiscences.

Whatever the length, stories do not just exist – their components are [somehow] selected, assembled and constructed. A metaphor I heard years ago, is that composing a life story is like making a necklace - selecting a collection of memories, where each bead is a memory that has been chosen, ordered and threaded on, one at a time. The shape, colour, and pattern of the beads that people select for their ‘life story-necklace’, as well as the length, can change over time as people become involved in the process of reflecting about their life and sharing it.

Stories are not fixed or predictable and can change through the process of thinking about them and telling them – as people see new aspects and connections to events:

some stories are ‘mood dependent’, i.e. they are told only when a person is in a particular mood
some arise only once – with a particular trigger, or thought
some stories are part of the daily conversational arsenal (and you can rely on them as a greeting or ending story)
some stories change as people have new insight into their context or meaning (Even some frequently recounted stories - the ones that everyone in a family has heard often - have changed with repeated telling, or special interest shown in them. E.g. “Dad you tell that story about such and such very often. What makes it so important to you?”)

For example, I recall working with one gentleman who had fought in WW2. When he first recounted this time of his life, he spoke of it calmly, factually, and chronologically; he gave many names, locations, numbers, dates and brave deeds. (It sounded like some of the history lessons we had at school.) Though this gentleman developed dementia, I continued the life-history collection with him. He repeated a particular story each time I saw him – it was about the most heroic thing he had ever done.

One day, he spoke about being in hiding, facing danger and being so frightened; he was often hungry, and spoke of crying when he was alone and of dreaming about his family. This story was so different from previous accounts - it took me a while to realize that he was speaking about the war years he had previously spoken of; the switch from an objective to a subjective an view. Factual content had la! rgely been replaced by emotional content that he had never spoken of before.

Which version of a story is the most representative of a person’s life? Likely a combination of both – though documenting such a story may require skilled editing.

For most people, thinking about and sharing their life stories is a positive experience. Yet, it can be painful for those who - perceive life as meaningless, are unable to forgive others or themselves for events perceived as wrong, or remain identified with a conflict or issue. In working with people with dementia, it is also possible that past traumas may re-surface⁵. Some people will need the help of professionals.

Such observations have caused researchers to consider which are the most useful, of the variety of ways reminiscences and life histories can be documented, and which types and versions of stories are most helpful for inclusion in a person’s care documentation.

Reminiscing and life review, and guided biography

Reminiscing refers to remembering and speaking about past events and experiences. Many care homes hold ‘reminiscing sessions’ as a weekly activity for small groups of residents, but are occasionally done one-on-one. Discussions are usually started with a particular theme or topic in mind; questions and/or various types of props can be used as triggers to facilitate recollection. (There are some commercially available kits to help with this.) However, since the goal of these sessions is the enjoyment of sharing conversation around individual memories and comparisons, specific reminiscences are not usually recorded or edited for inclusion in individual life story compilations.

The pioneer gerontologists Robert Butler and Myrna Lewis, started writing about ‘life review work’ in the 1960’s ^6,7. Although the process of reviewing one’s life occurs spontaneously, it can also be done in the form of structured reminiscing or life review, which requires reflection and self-evaluation. (An example of a reflective question is - whether new losses and bereavements become harder or easier to accept with time and experience. Though many people say it is more difficult, one lady responded: “It’s not easy getting older, but some things get easier. It gets easier to lose people and things with practice. It still hurts, but it’s not devastating.”)

Butler and Lewis saw life review work as not only helping people to construct and develop their stories, but an important developmental task of later life - a process of re-evaluating one’s life to help make sense of it, and even potentially to resolve memories and conflicts - bringing insight, reconciliations, acceptance of the life one has lived. Like reminiscing, life review work was also used with residents in assisted living and care homes, though it never reached the popularity of reminiscence groups – since it was time consuming, and required psychotherapeutic skills. However, their work showed that reminiscing had therapeutic value, and challenged the thinking of the time, that older people should be discouraged from reminiscing because it made them more inclined to live in the past, and was linked to dementia, (senile psychosis, as it was called then).

Guided Biography, a more accessible form of life review, was developed by Prof. James Birren in the 1970’s, for all people, especially those over fifty ^8,9. This method also uses a more structured approach than reminiscing. During a 10-week course, a group leader introduces topics to participants that are intended to prompt reflection, such as - branching points in life, family and children, spirituality, work, nature, death. Participants write a few pages on a theme and share them in small groups during meetings. (The upshot of this approach, is that it is helpful to start thinking about your story early, and not to put it off until old age.)

Working with people with dementia

Since the interest in reminiscing started, many have contributed to the eliciting, valuing and recording the memories of people with dementia ^10-14. [To my knowledge, the work of Taylor, van Amelsvoort Jones, and Zeiss, 1983, was the first life review work done with people with dementia.] For some current work being done in this area, see references 15 and 16.

The documented intra-personal and inter-personal benefits of reminiscing and life history work with people with dementia include:

. to help people realize they have unique experiences and stories

. to help people leave a legacy for one’s family, friends, caregivers, or society -

to connect one’s personal story to larger set of family stories or cultural histories

. as an activity - for the pleasure of sharing, comparing and communicating

(something to talk about that does not rely on common education, experiences,

culture, entertainment or current events)

. to express one’s sense of identity, experiences, learning and accomplishments

. to make sense of, and/or accept one’s life

How stories can be used and saved

As part of life history research work I was involved with, residents were asked whether and how, they wanted their story to be saved and used. People with dementia in Behavioural Stages 1 and 2* were included. As in the example given above - though most people had difficulty relating the ‘facts’ accurately, they could recall many life events vividly, and describe the ‘jist’ or emotional flavour of family, friends, colleagues, work, events, and also their life perspective, and philosophy of life. [The latter information usually came out by asking what advice they would give to the younger generation about issues like courtship, marriage, child-rearing, work, dealing with hardship and suffering in life.]

Residents were asked if they wished to have their story documented, and/or -

. placed in with their charts and care plans, to be used by professionals only

. kept in a separate booklet, in their bedroom, for staff and family/friends to read,

and/or add to, or

. prepared as a document, to give to their family members now, or after their death.

(Residents were offered the chance to read the notes and edit their life story notes. Though very few were able to do so, many enjoyed hearing the accounts of their stories read aloud to them.)

The vast majority of residents were delighted to have their stories recorded, and remembered. (Back then, the recording options included audiotaping, handwritten and typed versions, and for only a few – the costly option of filming - using the video-camera borrowed from the School of Medicine. It surprised us how many people wanted to be filmed!) Two people wanted to tell their story - but did not want it recorded in any form. This was puzzling, and I asked one lady why she refused this offer. She said, “I want someone to hear it, no one needs to be burdened with remembering it.” To be listened to, at the end of one’s life, may be a little-documented ‘universal need’.

Asking family members to supplement the life story

Some family members did become involved in the life stories or residents, and wanted to supplement the content by add photos, and their own memories of the person. Some family members were wary of losing original photos (of which there were no copies), and went to great expense to making copies of photos. At the time (1980’s), this required re-photographing photos, or making (lesser quality) photocopies of them. Unfortunately, copies were usually too small to be recognized by the residents. Nowadays, many family members have access to scanners and printers; they can enhance, scale and laminate photos, relatively inexpensively.

Some families have come up with novel ways to assist in recording the stories of the person with dementia. One granddaughter said that her grandmother had always spoken of wanting to write a book about her life, though she had had little formal education. When the granddaughter prompted her grandmother to do so, the grandmother refused (it was not possible - because she was already in early stage dementia). The granddaughter, undaunted, wrote to her grandmother, weekly. With each letter, she prompted her grandmother to write about one question or anecdote in each letter. With such ‘bite-sized chunks’, the grandmother effectively did write her story.

Other family members have done similar things by starting scrapbooks; during each visit to the care home, they speak about one topic and record it with their family member.

Using a social history for residents with dementia who don’t have family

Some residents had no known family members, or family members who lived so far away they could rarely visit. Some residents are only admitted to care homes after they have lost the ability to speak in intelligible sentences. A large challenge for caregivers then, is how to have recording tools that can assist such residents to also have a sense of story, and for other to be able to use it to assist with activities and care. Ideas for this will be covered in future newsletters.

References-

1 Birren JE, Schroot JF (2000) A History of Geropsychology in Autobiography. Washington, D.C.: APA Books

2 Canadian Immigration research at Pier 21 Museum, Research Dept. http://www.pier21.ca/research

3 BBC North East Wales, Get in touch to share your story and memories at this site http://www.bbc.co.uk/wales/northeast/sites/history/pages/map.shtml (retrieved 15 Dec. 2011)

4 Centre for Journal Therapy http://journaltherapy.com/journaltherapy/journal-cafe/journal-writing-history

5 Miesen BML, Jones GMM (1995) Psychic pain re-surfacing in dementia: from new to past trauma? ( C. Rowlings Ed.) Past Trauma in Late Life : European perspectives on Therapeutic work with older people. Jessica Kingsley Pub., London. Pp142-154.

6 Butler RN (1963) The life review: an interpretation of reminiscence in the aged. Psychiatry. 26:65-76

7 Lewis MI, Butler RN (1974) "Life Review Therapy: Putting Memories to Work in Individuals and

Group Psychotherapy." Geriatrics 29: 165–169, 172–173.

8 Guided Biography programme by James Birren. For details see: www.guidedautobiography.com

(retrieved 15 Dec. 2011)

9 New York Times article on guided biography as developed by Prof. James Birren

http://newoldage.blogs.nytimes.com/2011/07/18/a-guided-tour-of-the-past/(retrieved 3 Jan. 12)

10 Taylor S, van Amelsvoort Jones GMM, Zeiss E (1983) Collecting and Conducting Life Reviews. Proceedings of 1st annual National Conference on Gerontological Nursing, (vol. 2) Victoria, BC, Canada.

11 van Amelsvoort Jones GMM, Zeiss E (1984) Encouraging Reminiscing in the Institutional Setting. Perspectives. The journal of the Gerontologoical Nursing Association. 8: 4; 6-9.

12 Coleman P (1986) Aging and reminiscence processes: social and clinical implications. Wiley. NY.

13 Woods R, Portnoy S, Head D, Jones GMM (1992) Reminiscence and life review with persons with dementia: which way forward? in: Care‑giving in Dementia (Jones and Miesen; Eds.) pp. 137‑161

14 Haight BK, Webster JD (1995) Eds.: The Art and Science of Reminiscing: Theory, Research, Methods, and Applications. Washington, D.C.: Taylor & Francis, 1995.

15 LABTEC Conference (London and Brighton Translational Ethics Centre), 15^th February at Brighton and Sussex Medical School University of Sussex campus. Topic: the place of patients’ stories in understanding the experience of living with neurodegenerative disease, and the challenges involved in capturing and responsibly utilising first person accounts of life limiting illness.

Project description, Neurodegenerative Disease, Biography and Identity:

http://www.brunel.ac.uk/sss/research/research-centres/cbas/labtec (Retrieved 5 Jan. 2012)

16 Life Story Network. Your Story matters. National training project (England and Wales) funded by the Dept. of Health, to help with dementia care work and the National Dementia Strategy.

http://www.lifestorynetwork.org.uk/

2012-01-03T19:20:00.000-05:00

=============================

This Week:

Evening Support Group for Adult Children of People with Alzheimer's Disease:

Wednesday, January 4, 2012

5:30 PM - 6:30 PM

Dartmouth-Hitchcock Aging Resource Center

46 Centerra Parkway Lebanon, NH

Support Group Facilitator: Robert B. Santulli, M.D

=============================

2012-01-01T17:10:00.000-05:00

From the Huffington Post:

New Year's Resolutions for Alzheimer's Caregivers

Rita Altman, R.N..Vice President, Memory Care and Programming for Sunrise Senior Living

New Year's is a great opportunity for caregivers to recognize the challenges they may face in 2012 and recommit themselves to becoming a better caregiver every day. Choosing just one of the activities below that you may not be doing currently can have a major impact on your loved one and yourself.

Ask for help and take a break

Make it a priority this year to give yourself a respite. Everyone needs time off to recharge, and chances are that your friends and family are happy to help. This time away from caregiving responsibilities will help you relieve stress and allow you to provide even better care to your loved one in the future.

Be especially mindful of not refusing help, and accept assistance from friends, family members or the services of professionals. There is no reason to feel guilty or believe no one else can provide the care as well as you can. For friends and family who may not feel comfortable caring for a loved one with memory loss, help educate them on some of the most successful strategies. Check out more tips to make respites successful for everyone.

Join a support group

Support groups are invaluable, as they provide an opportunity to share advice, vent frustrations and learn from others who have the same concerns, stresses and challenges. These meetings provide a confidential outlet for sharing feelings and receiving comfort. The Alzheimer's Association has a comprehensive list of local support groups, or you may contact a senior living community near you.

Support groups can also provide an outlet for activism. Stand up for the needs of those with Alzheimer's disease and become an Alzheimer's Association advocate. Support the HOPE for Alzheimer's Act, which aims to improve the diagnostic process and provide more information and support to caregivers.

Educate yourself

The more you know, the better-prepared you are to provide care for your loved one. Take the time to understand how memory loss impacts an individual and those around them so you can anticipate changes in your loved one and proactively plan for the next step, while helping others cope with the effects of the disease.

With some basic knowledge, you can begin to understand what those with Alzheimer's are feeling and what you can do to ease their anxieties and connect with them.

People who have Alzheimer's disease often repeat statements or show frustration and anxiety. Understand that this is their way of expressing an unmet basic human need. Learn how to identify their unmet needs and validate their feelings by truly responding appropriately. This validation technique helps you truly connect with your loved one, helps promote their self-esteem and makes them feel valued.

A
lso, learn how to keep aging brains active. A flood of new research has offered profound insights into how to keep aging brains active and how to delay or prevent the onset of memory loss and dementia. As caregivers, we have a special obligation to translate these new understandings into action.

Read The Shriver Report: A Woman's Nation Takes on Alzheimer's. The remarkable book on Alzheimer's disease and its disproportionate impact on women presents new academic research and is a must-read for anyone caring for someone with Alzheimer's disease.

Center yourself

To be a great caregiver, it's important that you are able to fully concentrate on the needs of the person with memory loss. This means that prior to interacting with your loved one, start with a calm, clear head and an open mind.

A validation technique called "centering" helps you to remain calm and patient during frustrating moments. Try the following centering technique:

•Focus on a spot about two inches below your waist.

•Inhale deeply through your nose, filling your body with air.

•Exhale through your mouth.

•Stop all of your inner dialogue and devote all of your attention to your breathing.

•Repeat this procedure slowly, eight times.

Centering allows you to move past the difficult moments every caregiver experiences and helps you feel more confident, capable, and fully present as you engage with your loved one.

Journal

Purchase a journal and write down your thoughts and feelings about being a caregiver. Journaling is a healthy way for a person to confront their own emotions and begin to process them. Studies have shown that regular writing can bolster the immune system, ease stress and help you recover from any traumatic events more successfully.

2011-12-28T19:01:00.001-05:00

New Support Group Schedule

Effective January, 2012

each support group now

meets twice a month

Daytime Support Group for All Caregivers:

Second and Fourth Fridays of Every Month

1 PM - 2 PM

DHMC - Area 4H Health Education Center.

Support Group Facilitator: Robert B. Santulli, M.D

Evening Support Group for Adult Children of People with Alzheimer's Disease:

First and Third Wednesdays of Every Month

5:30 PM - 6:30 PM

Facilitator: Robert B. Santulli, M.D

Dartmouth-Hitchcock Aging Resource Center

46 Centerra Parkway Lebanon, NH

Support Group Facilitator: Robert B. Santulli, M.D

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Memory Cafe Schedule

Effective January, 2012

The Last Saturday of Every Month

10 AM – Noon

Program Facilitator: Robert B. Santulli, MD

Dartmouth-Hitchcock Aging Resource Center

46 Centerra Parkway, Lebanon, NH.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

2011-12-28T18:32:00.002-05:00

Study reveals those with diets high in omega 3 are less likely to lose brain capacity later in life 

By DAVID GERGES

Eating fish on a regular basis may help protect against Alzheimer's and brain shrinking in older age a new study has found.

Research shows that people with diets high in omega 3 fatty acids and levels of C, D, E and B vitamins had higher mental performance scores than those with diets low in those nutrients.

Scientists studied 104 individuals with an average age of 87 and few risk factors for memory and thinking problems.

Tests were carried out to determine the levels of various nutrients in participants' blood samples.

All the volunteers also underwent tests of their memory and thinking skills. In addition, 42 had magnetic resonance imaging (MRI) scans to measure their brain volume.

Study author Dr Gene Bowman, from Oregon Health & Science University in Portland, US, said: 'These results need to be confirmed, but obviously it is very exciting to think that people could potentially stop their brains from shrinking and keep them sharp by adjusting their diet.'

Nutrient biomarkers in the blood accounted for 37% of the variation seen in brain volume and 17% in test scores, said Dr Bowman.

Other factors such as age, number of years of education and high blood pressure accounted for 46% of test score variation.

Previous studies have only looked at one or a few nutrients at a time, or have used questionnaires to assess people's diets.

Self-reporting is unreliable since it depends on people's memory and fails to account for individual differences in the amount of nutrients absorbed by the body, according to Dr Bowman.

Omega 3 fatty acids and vitamin D are primarily found in fish, while B vitamins and vitamins C and E can be obtained from meat, fruits and vegetables.

In total, 7% of the study participants were deficient in vitamin B12 and 25% were deficient in vitamin D.

The findings were published online today in the journal Neurology.

2011-12-27T14:58:00.001-05:00

from Boston.com

New Method for Detecting Earliest

Signs of Alzheimer’s May Aid Research

12/21/11

Boston researchers say they have found a new method for detecting subtle brain changes in people who have no memory problems but who may already be in the earliest stages of Alzheimer’s disease.

The findings, published online today in the medical journal Neurology, may help speed clinical trials for potential Alzheimer’s treatments, according to Dr. Bradford Dickerson, an associate professor of neurology at Harvard Medical School and lead author of the study.

“We need efficient, cost-effective ways to screen people for research,” said Dickerson, who also is a brain specialist at Massachusetts General Hospital. “This will potentially give us a tool that will help identify people in a more efficient manner.”

Dickerson said his screening method is not ready for use in physicians’ offices. Researchers and the medical community still must pinpoint reliable markers for the disease, that could be used much the same way doctors now measure early signs of heart disease by monitoring patients’ cholesterol levels.

Dickerson’s team used brain scans to measure the thickness in nine specific areas of the brain in 159 people who did not show signs of dementia or other cognitive problems.

The brain regions were chosen based on prior studies that showed they shrink in patients with Alzheimer’s. The median age of the participants was about 76 years.

Of the 159 people, 19 were classified as high risk, meaning that they likely were undergoing the earliest stages of Alzheimer’s disease because of the smaller size of their brain regions that corresponded to areas typically affected by the illness. Another 116 were deemed to be at average risk for the disease, and the remaining 24 at low risk.

At the beginning of the study and over the next three years, participants were also given tests that measured their memory and problem-solving abilities.

The researchers found that 21 percent of the participants deemed high risk for Alzheimer’s experienced cognitive declines during the three years, compared with just 7 percent of those at average risk and none of those at low risk. The participants weren’t diagnosed with Alzheimer’s, but researchers said the cognitive declines may have been an indication of the earliest signs of the disease.

There is no known cure for Alzheimer’s disease, and recent drug trials have produced disappointing results.

But a growing number of researchers believe that the lack of progress may be because the drugs are now tested only in people whose Alzheimer’s is too advanced.

Researchers are searching for ways to detect the disease at its earliest stages, before it damages critical brain cells, because they believe that’s when potential treatments would be most effective. Many believe that an accumulation of a specific protein, known as beta amyloid, in the brains of Alzheimer’s patients may be a reliable marker to identify the disease early on.

Dickerson’s study found that 60 percent of the group of participants identified at high risk for Alzheimer’s because of their smaller brain regions also had abnormal levels of amyloid in the fluid of their brains and spinal cord. In comparison, the abnormal amyloid levels were detected in 36 percent of those deemed to be at average risk, and 19 percent at low risk.

But relying solely on the detection of amyloid plaques as an early sign of the disease has frustrated scientists because data from autopsies and various studies have shown that about 30 percent of people with normal cognitive function had substantial amounts of amyloid in their brains.

Susan Resnick, chief of the behavioral neuroscience laboratory at the National Institutes of Health, said Dickerson’s new method could give researchers a more accurate tool for pinpointing from the people with amyloid plaques those who would most likely go on to suffer an Alzheimer’s decline.

This would be the group most likely to benefit from potential treatments, and would be the type of participants researchers need to find, Resnick said.

“This is a disease that we believe starts 10 to 15 years before we see clinical symptoms,” Resnick said, “so we need these kinds of tools to try to understand the disease at the earliest possible stage.”

Dickerson said he hopes his method could be used to lower the costs for screening participants in upcoming clinical trials of potential Alzheimer’s treatments, such as one Brigham and Women’s Hospital researcher Dr. Reisa Sperling plans to start next year.

Sperling said in an earlier interview that she hopes to begin a three-year study of an amyloid-clearing medication on as many as 1,000 people, 70 years old and older, whose brains show an accumulation of amyloid plaques but who don’t appear to be impaired. She said that the cost of the reseach is expected to be in the range of $100 million but that she hoped to lower that amount by finding more efficient ways to screen participants.

2011-12-26T21:12:00.003-05:00

From the Albert Lea (MN) Tribune

Alzheimer’s Affects
Everyone in the Family

Published 10:10am Monday, December 26, 2011

By Amanda Weiss, Guest Columnist

My grandpa passed away from Alzheimer’s disease in 2005. He was 68. I was around 12 when he started showing signs; my grandpa was 58 years old when diagnosed with the disease.

My great-grandma, who would be my grandpa’s mom, my great aunt, who would be my grandpa’s sister, and my dad, who would be my grandpa’s son, have all been tested for Alzheimer’s in a clinical study but they do not know if they carry or will have Alzheimer’s.I remember watching my family members stress about who was going to take care of my grandpa. Was he going to be safe on his own, when could he not work anymore, how to take away his driving abilities, how would he understand being placed in a nursing home.

He was always a kind, gentle man before the disease, while with the disease he never seemed like himself. It did, however, amaze me that on his good days he might not have remembered his name, but he would remember a family vacation 10 years ago, or something he did while growing up. He had his good days and bad days — the one thing that I always tried to remember were the good memories I had with him and I still cherish those today. Those memories are what I want to remember of my grandpa — not the disease. I am thankful for the memories and moments I have of him, my favorite treasures are the pictures of us having a good time.

I also remember the last week he was alive; I had not seen a glimpse of my real grandpa in a very long time. However, that day he did hold my hand, and I felt the warmth of my grandpa inside my mind, I felt as though he was telling me he was OK and to not be scared. That is one thing I will never forget. It was very difficult for me to be in the nursing home because I had been so close to my grandpa growing up. I was grandpa’s girl. I wanted to be there for him but it made me so sad. I’m very glad that I was by his side in the end because I always knew he was on my side.

I lost my best friend when my grandpa got Alzheimer’s. He was in his early 60s when his disease progressed, and the last five years he was in a nursing home. Those five years he was not the man I remembered, and it was very difficult watching my grandpa go through the changes and losing him. The final stages of the disease, he was blind, unable to eat regular food because he couldn’t remember to swallow, unable to walk to the rest room because he was crippled and bed ridden. The kind, active grandpa he once was was unable to shine through. He, however, always seemed calmer when my grandma was with him or a family member. The nurses he had were very kind, but the nursing home seemed so crowded and these people didn’t know my grandpa the way us family members did.

I really hope a cure can be found for this disease so that others do not lose their grandpas, too. This disease not only affects the person who has the disease but it also affects the patient’s family members and friends. My grandma tried to take care of my grandpa for as long as she could, it was hard for her, hard on her body and hard on her emotions, mostly because her best friend and the man she loved was being taken away a lot sooner than I’m sure she ever imagined. When my grandpa was placed in a nursing home, my grandma tried to spend every day visiting him — she fed him supper most nights because if she fed him he ate more than if the nurses fed him.

Family get-togethers were not the same because there came a point where my grandpa wasn’t able to leave the nursing home, and it was hard for his family to see him not knowing who he was. I also think it was also hard on him, being in a place that he should know, but because of the disease, he often had no idea where he was or what was right. Routine became very important for him. I, however, always felt my grandpa deserved so much more. I wanted him to be around to see so many things in my life but because of Alzheimer’s he never got to see me grow up.

My grandpa’s prized possession throughout his disease was a poodle named Minnie. Eventually the dog couldn’t be around him because he couldn’t handle the dog right, so a stuffed animal replaced the dog to comfort my grandpa.

I have so many thoughts about this disease, and I really hope one day a cure will be found. This will be my second year where I will walk in the Alzheimer’s Memory Walk in memory of my Grandpa Wayne. I volunteer because I can and I want to make a difference. I want to find a cure!

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