2013-05-20T13:13:47-04:00 John Zeisel, Ph.D. http://www.huffingtonpost.com/author/index.php?author=john-zeisel-phd Copyright 2008, HuffingtonPost.com, Inc. HuffingtonPost Blogger Feed for John Zeisel, Ph.D. Good old fashioned elbow grease. tag:www.huffingtonpost.com,2011:/theblog//3.1086886 2011-11-14T15:11:46-05:00 2012-01-14T05:12:02-05:00

John Zeisel, Ph.D. http://www.huffingtonpost.com/john-zeisel-phd/ This blog is the second in a series by the same authors on "How to Respond to a Person With Dementia Who Is..."

Co-written by Nettie Harper, MSRS and Michael Friedman, L.M.S.W.

"Go away, you thief," Margaret screamed when her son knocked on the door of her room. "You stole my money." He opened the door and entered. "Get away!" she screamed again. She was sitting in her easy chair. A cup of coffee was on the table next to her. She grabbed it and threw it at him.

"Mother, it's me, David," he says. "I didn't steal your money. You don't keep money in the room."

"You're lying, you thief. Get away from me." She was looking for something else to throw.

Stung by her words, he felt anger well up in him. He wanted to scream back, but he turned and left the room, closing the door behind him.

His mother has been living with Alzheimer's for almost a decade. Her memory for names and recent events has diminished more and more over time, as has her ability to deal with situations that diverge from her routines. She can no longer manage her finances, shop, cook or keep herself clean.

David is the child who has stepped in to make sure she has everything she needs and spend time with her. Today's outburst stunned and hurt him. He was uncertain what to do.

He is far from alone. Nearly 6 million people in the U.S. have Alzheimer's, many of whom are in the early stages and can manage without much help. But caregivers of those with more limited functional capacity face difficult challenges virtually every day. Dealing with distrust and anger is one that emerges from time-to-time. What should they do?

David's instinctive reaction to walk away was a good one. Screaming back would have frightened his mother and accomplished nothing. It's even possible that this was a passing moment and that she will forget her suspicions and be herself when he returns to the room.

But if it is not a fleeting experience, what could be happening and what can be done?

It is tempting to think that Margaret's feelings and behavior are the result of Alzheimer's because the condition involves changes in brain function that often make it difficult to contain emotions. But most people with dementia do not behave abusively toward people caring for them, and Margaret and David have had a warm relationship until today. Something must be troubling Margaret today!

It could be that something in the situation itself set her off. Perhaps David's knock on the door startled his mother awake from a nap. Perhaps his voice through the closed door was muffled and merged with something ominous that she was dreaming.

There may be a physical cause. Is she constipated or does she have an impacted bowel? Does she have a urinary tract infection or a toothache? Has she been sleeping enough or possibly too much? Is she having trouble hearing? Has her vision blurred or darkened? Is she taking a new medication? Physical conditions such as these can have a terrible impact on mood and behavior.

It is also possible that her "paranoia" and "irritability," her suspicions and anger, are psychologically rooted. A psychiatric evaluation and non-pharmacological interventions, such as structured activities or psychotherapy, can be helpful for people with co-occurring dementia and psychiatric disorders. Psychiatric medications are sometimes indicated but must be used with extreme caution because of their risks to the physical health of people with dementia.

David's mother's distrustfulness could reflect distress about a change in her physical or social environment. Has she moved? Has the place where she lives been renovated or rearranged? Is someone she cares about sick? Has someone died? Has there been a change in caregivers? Have eating or other routines changed? Changes in environment or routine can both cause confusion and distress in a person with dementia.

David's mother's anger might be justifiable but aimed at the wrong person. Has something been stolen? Has someone been harsh with her? Has someone hit her? Has she been molested? It may seem a long way from being insulted to becoming convinced that your son has stolen your money, but the mind follows its own path.

Sometimes it is fairly easy to figure out what is going on. Sometimes it may seem impossible. But there is always a reason -- a reason other than, "It's the dementia."

Here are some rules of thumb that may help you when faced with anger.

• Never yell back. A shouting match may succeed in winning a frightened silence, but you will not achieve a change of inner feeling.

• Deal with your own emotions about being distrusted by someone you care for and for whom you are doing your best. It can be very hard to take, but it's probably not something that the person with Alzheimer's can control voluntarily.

• Don't try reasoning ("Mother, you don't keep money in your room.") People with or without dementia who are angry and suspicious are almost never moved by reason and logic.

• If conversation is possible, ask questions about the situation and listen attentively to whatever explanation is given -- sensible or not. You may get a clue to what's going on.

• Avoid disrupting the routines of the person and, if there are changes, get back into the routines as soon as possible.

• If there were only one rule of thumb it would be: Be kind.

Nettie Harper, MSRS, is Director of Operations at Hearthstone Alzheimer Care. Michael Friedman, L.M.S.W. founded the Geriatric Mental Health Alliance and currently teaches at Columbia University's schools of social work and public health.]]> tag:www.huffingtonpost.com,2011:/theblog//3.933599 2011-08-28T12:55:00-04:00 2011-10-28T05:12:01-04:00

John Zeisel, Ph.D. http://www.huffingtonpost.com/john-zeisel-phd/
Please appoint a champion of non-pharmacological Alzheimer's treatment to the National Advisory Panel on Alzheimer's that you recently established pursuant to the National Alzheimer's Project Act.

Current medications can slow the advance of Alzheimer's disease in some people, but offer no hope of a cure for the estimated 5.5 million people with Alzheimer's or other dementias in the U.S. today, for the many millions more who will soon receive an early diagnosis of dementia, or for the even greater number of people who love and care for them.

Mr. President, like most Americans, you probably know and love someone with dementia and you undoubtedly want a cure to be found for this horrible disease. But do you know that if a drug were discovered today it will not improve the lives of those with dementia now or of those who will soon develop it?

Drug development for dementia has hit a brick wall. The National Institutes of Health Consensus report states: "Currently, no evidence of even moderate scientific quality exists to support the association of any modifiable factor (such as nutritional supplements, herbal preparations, dietary factors, prescription or nonprescription drugs, social or economic factors, medical conditions, toxins, or environmental exposures) with reduced risk of Alzheimer's disease."

The new national policy initiative for early diagnosis will do nothing for the millions of Americans with dementia and those who love them -- unless we can give them a life worth living. The hope to diagnose people earlier, long before there are any symptoms is just that -- a hope -- for our children and their children, but not for anyone with Alzheimer's today. Drugs can't give people with dementia a life worth living. Non-pharmacological interventions can!

The New York Times published an article several months ago about a program at a small nursing home in Arizona that amazingly allows people with dementia freedom to do what gives them pleasure -- even eat chocolate! Readers overwhelmingly responded with joy that in this one case rather than being locked up, stigmatized, and denied their human rights, residents with dementia were treated like people.

We as a society need to make this a reality for all elders, even those who happen to be living with dementia, giving all of them the opportunity to make decisions and to have a dignified and fulfilling life. We as a society need to provide all those with Alzheimer's a life worth living. Drugs alone can't do that. Non-pharmacological approaches can.

New approaches to giving people with dementia access to their communities are emerging. Movie theaters and museums, for example, are opening their doors and providing special programs for people with even advanced Alzheimer's disease. New books are being published about how to engage people with dementia in lives they find satisfying, offering realistic hope for people living with Alzheimer's.

People from all walks of life and professions are crying out: Please do not condemn people already living with Alzheimer's to a life locked up at home or in an assisted living program or in a nursing home. Please give them the access to society they deserve -- give them their human rights -- by investing in non-pharmacological approaches and not just drugs.

I recently circulated a petition to leaders in the field requesting that the National Advisory Panel include an expert who will champion non-pharmacological treatments for dementia. I want that this paradigm be considered seriously by the panel, that the panel promote evidence-based non-pharmacological practice, that research methodologies and methods be included that can capture the effects of these interventions on people with dementia, and that the human rights of both those living with dementia and caregivers be respected. The petition argues that the ethical dilemma of early diagnosis without any medical solution can be resolved through active application of the non-pharmacological approach.

The response was overwhelming in terms of numbers and professional positions of signers.

Let me be clear that we do not oppose research to find drugs that will cure Alzheimer's and other dementias. On the contrary, we hope that new discoveries will be made in time to help our children and our children's children.

But for those suffering now and for the generation of baby boomers, please join us to promote dignity in the lives of people with dementia, reduce the stigma and fear that surrounds Alzheimer's and other dementias, and give hope to the millions of people with dementia today and those who love and care for them.

Mr. President, please heed this call to appoint a champion of non-pharmacological treatments for dementia to your National Advisory Panel on Alzheimer's.

Here is the link to sign the petition to have a champion of nonpharmacological treatments for Alzheimer's appointed to the National Advisory Panel on Alzheimer's of the National Alzheimer's Project Act. ]]> tag:www.huffingtonpost.com,2011:/theblog//3.904080 2011-07-22T08:31:00-04:00 2011-09-21T05:12:01-04:00

John Zeisel, Ph.D. http://www.huffingtonpost.com/john-zeisel-phd/ "CBS Evening News" and "Fox News" reports.

Should we immediately go out and enroll in a French class? A headline in 2006 announced "Cabernet Sauvignon Red Wine Reduces the Risk of Alzheimer's Disease." Should those of us who like Pinot Grigio switch to Cabernet Sauvignon? After reading that people who drink 3 to 5 cups of coffee a day are 65 percent less likely to develop Alzheimer's, should tea drinkers who want to avoid dementia switch to coffee?

It is hard to interpret Alzheimer's research news. Perhaps researchers, while presenting their data accurately, also hope positive results will lead to future funding. Maybe fair and honest news reporters or their editors want to make the front page with startling headlines. For sure all news readers really want to hear good Alzheimer's news whenever possible.

In the case of the link between bilingualism and dementia, we have a unique opportunity to compare news reports -- from February 2011 -- to the actual research. In May 2011, the New York Times carried an interview with the author of the research, Dr. Ellen Bialystok. The first news report didn't say whether bilingualism protected only a small group, or whether all multilingual people -- which would include most residents of Canada, most immigrants to the US from non-English speaking countries and many people around the world who speak English, Spanish or Chinese as a second language -- were "protected."

My parents moved to New York from Austria and Hungary and spoke German as well as English, and in the case of my mother, Hungarian. They wrote and spoke English most of the time but spoke to each other in German when they didn't want us children to understand -- until we ourselves became multilingual. Is this why neither of my parents developed dementia symptoms? I doubt it. I speak French and German now and am trying to learn Spanish. Will this help me avoid dementia? The news implies this, but not the facts that Dr. Bialystok reports in her interview.

The bilingual research seems to reflect a modified "use it or lose it" philosophy -- applied not only to frequently using several languages but to frequently engaging in any activity that makes your brain jump between alternative ideation systems like French and English, words and music, and math and language, giving it something to fall back on when faced with cognitive challenges. The main implication of this research to me is that if you live a full and rich life with your mind continually switching between brain systems, your brain is likely to withstand some specific cognitive losses associated with Alzheimer's a few years longer than most people. This is not a "cognitive reserve" as some people like to think, nor a buildup of extra brain power that takes plaques and tangles longer to attack, but rather a rewiring that makes some brains more able than others to withstand physical change.

What can you do?

If you are a person living with mild cognitive impairment, a very early stage of memory loss, you might figure out what skills like bilingualism you already have and exercise those -- every day. A retired engineer would continue to build and repair things, maybe even asking friends and family to bring over broken, small appliances to be taken apart and put back together. Richard Taylor, a retired professor, keeps his mind active by emailing his cogent thoughts almost daily to thousands of friends and colleagues. Since his diagnosis, he has even written a book called "Alzheimer's From the Inside Out."

If you are someone who cares for a person with dementia, especially in the early years, make sure the person continues to practice what interests him or her for as long as possible. Don't let them get depressed, stop using the skills they have and give in to their negative thoughts: "I can't paint, photograph, play the violin the way I used to, so I will just stop altogether."

But remember, you have to have done this all your life to have any effect. The takeaway is not "learn another language," it's use every skill you have from a very early age and don't be afraid to multi-task. As the recession continues and academic courses suffer, classics professor Kristina Chew is justifiably "dismayed at the number of foreign language classes and programs that have been cut in public schools and also at colleges and universities in the face of budget issues." Training more language teachers for the young might well be one of the best national dementia-delaying social investments. Our children and their children, all of us, need to use all the skills we have to develop and use our multilingual "translating" systems -- visiting museums, attending concerts, playing an instrument -- early in life and throughout our lives, so we have something to fall back on when we face those same cognitive challenges.
]]> tag:www.huffingtonpost.com,2011:/theblog//3.866082 2011-05-24T09:21:03-04:00 2011-07-24T05:12:01-04:00

John Zeisel, Ph.D. http://www.huffingtonpost.com/john-zeisel-phd/
Informed experts know that despite positive scientific research news, medications to improve cognition are presently useful only for some people some of the time, and only when prescribed judiciously. The news about medication is particularly disappointing lately. For example, the off-label use of a much-prescribed drug in early stages of Alzheimer's has been found to be ineffective.

In fact, non-pharmacological lifestyle changes are more promising for immediate help, with often reported significant statistical correlations or causal relationships between improved quality of life among those with dementia and music, exercise, knowing a second language, or taking a walk -- London Telegraph Article ½ Hour walk Cuts Alzheimer's Risk.

Should we continue to wait anxiously for a pill to solve our problems with dementia, or is it time to search seriously for other ways to deal with this condition? It depends on our time frame.

For your and my children and grandchildren, scientific and pharmaceutical discoveries may herald a positive future. Why so long? Because even if there were a significant scientific breakthrough today in animal models or in a Petri dish, it is likely to take a decade or more to translate bench research into a medication useful in regenerating brains or meaningfully slowing down symptoms.

For those living with dementia today -- 5.4 million Americans, more than 30 million people worldwide -- and for the 44 percent of adults in the U.S. with a family member or a friend with Alzheimer's, we have to look into non-pharmacological ways to improve our quality of life with dementia, such as going to museums, taking a tai chi course, keeping a memory book, learning a second language or taking a daily walk.

What can you do?

Can a person with mild or even moderate memory loss safely take a walk regularly without getting confused about when and where? Yes they can, and here's what you can do to help.

If you have been diagnosed with Alzheimer's disease, plan a route, ask others you know to walk with you and start walking. Call it a "Walking Club." Recruit your partner, neighbors, friends and your children. Establish a routine that suits your way of life: Up at 8 a.m., breakfast at 8:30, dress for the walk at 9, friends over at 9:15, out the door at 9:30, the same 30-minute path each day, and back at 10.

Create a large-print schedule and put it on the wall; laminate it so that it feels official. Include a map of the walking path you have decided on, with pictures of significant landmarks and actual directions; insert the times you expect to pass each landmark and arrive home. If walking isn't your thing, figure out another way to exercise for 30 minutes a day, and recruit others to join your "30-Minutes-a-Day" Club.

If you live with or care for a person with Alzheimer's, it probably is not a bad idea for you to take a daily walk as well: exercise lowers cholesterol, lowers the need for insulin for those with diabetes and maintains mental alertness. Organize yourself to take a half hour walk at the same time every day. Invite the person with dementia to walk with you; tell her that you don't like to walk alone and that you need help to make sure you keep up the daily walks -- both true. If she says no, take the walks by yourself to begin with, and keep up the invitation.

The best path is simple and clear, has boundaries on both sides (for example, plantings) and passes landmarks like a corner store or a school. There is no chance of confusion on a path like this.

If there are shops along the way, stop to let salespeople know what you are doing so that they can be part of your safety net. Just in case, leave a note with a photo, the name of a friend and a phone number. Don't be embarrassed to involve the community. This video interview with a person in a very early stage of dementia conveys the benefits of a daily walk. As his dementia progresses he will be able to fall back on the path he has learned at this time.

Become active in your community and advocate for the town to establish walking clubs in public parks for people with memory issues and their partners, like the evidence-based walking clubs that an organization called Dementia Adventure are promoting around the U.K.

Never forget that while dementia is a terrible condition, millions of people in the U.S. and around the world with a diagnosis of Alzheimer's are keeping as healthy as they can -- both body and mind.]]> tag:www.huffingtonpost.com,2011:/theblog//3.856662 2011-05-03T08:02:42-04:00 2011-07-03T05:12:02-04:00

John Zeisel, Ph.D. http://www.huffingtonpost.com/john-zeisel-phd/
Almost everyone believes that Alzheimer's ravages the brain, destroys a person's memories, ruins relationships--in fact, destroys the person's entire self. No wonder that a 2010 survey of 1,007 adults by Harris Interactive found that almost as many people in the U.S. fear "getting" Alzheimer's (31 percent) as fear cancer (41 percent) and that the fear of Alzheimer's increased over 50 percent since 2006--more than any other disease. Despite this large attitudinal shift, fully 62 percent of those surveyed also said they know little or nothing about Alzheimer's.

In fact, a great many people in the first 10 years of this condition live their lives to the fullest--renewing and deepening relationships with those they love and who love them.

For example, Jim Murr in South St. Paul, Minnesota lived with and loved his wife Jean for 10 years after she developed Alzheimer's. Jim wrote a beautiful love letter to her after her passing in the form of a short book describing her life and their life together with dementia during which "Jean awoke with a smile every morning," filling his heart with joy.

Another example is the 300 people living with dementia who come every three months to the Coolidge Center Theatre in Brookline to see clips of iconic films (think the "we'll always have Paris" scene between Bogart and Bergman at the end of Casablanca) and share their memories the films bring to mind.

What Can We Hope For?

One thing we can't hope for is a magic pill that will cure Alzheimer's. There is much research going on, and from time to time we hear about promising developments. So far the best medications can do is to slow the progressive loss of cognitive capacities. But no one expects a cure anytime soon. We will be living with Alzheimer's for the foreseeable future.

We can hope for more and more use of nonpharmacological interventions that help people with Alzheimer's live a better life for as long as possible. As I have detailed in my book, "I'm Still Here," there are a myriad of ways to help people with Alzheimer's overcome "behavior" problems and emotional suffering that are built on the perspective that a person with Alzheimer's is still a person with interests, desires, and abilities.

We can also hope for neighborhoods designed so that people living alone or with their families can more easily find their way to a shop and back home. We can hope for cinemas, museums, and coffee shops that are "Alzheimer's-friendly" with trained staff and special programs and events designed to engage customers with cognitive challenges.

And, we can hope for a reduction of the public stigma surrounding Alzheimer's so that those living with dementia are not isolated either at home and in institutions by our fears and theirs.

What Can You Do?

If you have been diagnosed with Alzheimer's disease, you can stay active and involved with other people. You can pursue long term interests and even learn a new skill. Many people find great satisfaction in art, both doing it and viewing it. Others find satisfaction in old movies that keep their memories alive, concerts with music that brings pleasure, taking walks for exercise in familiar settings. If you have ever spoken a second language, keep it up and perhaps take a refresher course.

If you are living with, or caring for, a person with Alzheimer's you can focus on the moment--even the little joys like a smile in the morning--rather than being driven by fear of an unknown future you imagine from the bad news you read and hear. You can arrange to go on a preplanned and well organized cruise together. You can find the museums in your city or town that offer special tours for people with memory problems and attend regularly. You can organize your life with the person you love around things you like to do--playing golf, going to concerts, going to sports events.

You can also become active in your community and advocate for it to become "dementia friendly." Contact your local senior center and Alzheimer's Association as well as the Mayor's office and the local department of the aging to encourage them to become "dementia friendly."

Most important, do not accept the common view that Alzheimer's is always and only bad news. It's a terrible disease, but a diagnosis of Alzheimer's is not the end of life, by a long shot.]]>