Disease Cure Remedy: April 2012

Monday, 30 April 2012

Learning How to Use Alzheimer's World to Your Advantage

The goal is to learn how to understand, cope, and communicate with someone that is deeply forgetful.

By Bob DeMarco
+Alzheimer's Reading Room

Learning How to Use Alzheimer's World to Your Advantage

Harvey
My Alzheimer's Caregiver
Assistant

Some of you will recall that I went away for two days in January and left Dotty with the A Team -- Jim and Ruth. Dotty did wonderfully well.

I talked to Dotty on the phone about 6 times, and she seemed happy and content. All seemed to be going well, except Ruth told me that Dotty was asking with increasing frequency where I was. This meant increasing angst.

I should mention this. When Dotty is with Jim and Ruth she is rarely alone. They talk to her and include her in on everything they do. Aha.

Dotty gets lots of attention, and Food.

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Jim and Ruth have this wonderful facility to treat Dotty the way they always have. They know what is going on, but it does not seem to affect in any way their ability to talk with her. Frankly, they act the way they always have. Aha. One thing this does is put Dotty in the WayBac machine.

When I returned in January, after a few minutes Dotty had her arms folded across her chest. A sure sign that she was upset. When a person crosses their arms while talking to you, they are shutting you out. There are some exceptions to this rule. For example, if it is cold, or if you feel cold you might cross your arms to warm up.

In January, Dotty pushed me away when I went to hug her. Clearly, she was upset with me. Fortunately, with some good direct communication and good attitude, I was able to bring her around in a couple of hours.

With that experience in mind, I decided to take direct action this time around.

As soon as I arrived home from New York, I went in the house and put on some shorts and a T shirt. I then hurried over to Jim and Ruth's.

I went over to Jim and Ruth's and blew right in the door. As soon as I saw Dotty I said, are you ever going to come home? Harvey and I have been patiently waiting for you to come home. Harvey told me to tell you, to come home so he has someone to talk too.

Dotty looked at me sorta bewildered. Before she knew what happened I gave her a hug and said, we need to get moving we have a big day in front of us. She wanted to know what big day? I told her don't worry we have a lot to do (note: in Alzheimer's World you don't have to explain).

We then sat around and talked to Jim and Ruth for a bit.

Once we arrived home, I took the offensive. I said to Dotty, we need to go to this store, and that store, then we need to go get something to eat. I gave her a cup of coffee and then I started yaking with Harvey.

I said: Dotty where were you? Harvey repeated: Dotty where were you?, Dotty where were you?.

I said: Dotty we missed you. Harvey repeated: Dotty we missed you, Dotty we missed you.

I said: Dotty I bet you had a good time. Harvey repeated: Dotty I bet you had a good time, Dotty I bet you had a good time.

By now Dotty started telling Harvey to shut up, and other things she usually says to him.

Next, I took Dotty for a pee. And then she laid down and went out like a light. She was sleeping away, hard. I watched her for a while. I concluded that thinking about where I was and when I was coming back really wore her out. It was noon time.

When Dotty woke up I said, wow, you were out cold. You must have had a great time. She asked, great time doing what? I said, I don't know, you were the one that was having all the fun (note: in Alzheimer's World there is no need to explain yourself).

From there we segwayed right back into our life, as if nothing had happened or changed. And, as if I was never gone.

Was I? Or, was Dotty the one that was away for two days?

And now to my point. You just have to think positive, get over into Alzheimer's World, and make it happen.

Alzheimer's World is a really good place if you want it to be.

You get to choose.

I did.

Related content.

Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The blog contains more than 3,461 articles with more than 397,100 links on the Internet. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room

Sunday, 29 April 2012

Beers Criteria for Potentially Inappropriate Medication Use in Older Adults

Because older adults often experience chronic health conditions that require treatment with multiple medications, there is a greater likelihood of experiencing unwanted drug side effects.

Alzheimer's Reading Room

A wide range of medications—some relatively new and others long available—can cause serious side effects and other adverse events in people 65 and older if not prescribed with care, according to the new American Geriatrics Society Updated Beers Criteria for Potentially Inappropriate Medication Use in Older Adults.

The criteria, last revised in 2003, appears today in the early online edition of the Journal of the American Geriatrics Society, and is available, with additional professional and public education materials, at www.americangeriatrics.org.

I think you will be very surprised if you take the time to review this information.

AGS Beers Criteria Summary - For Patients & Caregivers
Ten Medications Older Adults Should Avoid or Use with Caution
Criteria & Evidence Tables
Beers Criteria Pocket Card

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By identifying medications that are potentially harmful for older adults, the 2012 AGS Beers Criteria can help clinicians more safely prescribe for older patients.

More than 40% of people aged 65 and older take five or more medications according to a 2008 study published in the Journal of the American Medical Association (JAMA) and each year more than a third of them will suffer a drug side effect or other adverse drug event (ADE).

Estimates from studies published in JAMA (2003) and the American Journal of Medicine (2005) conclude that 27% of ADEs in primary care settings and 42% in long-term care facilities are preventable. A 2000-2001 Medical Expenditure Panel Survey estimates healthcare expenditures related to the use of potentially inappropriate medications at approximately $7.2 billion.

“Older adults run a particularly high risk of ADEs, in part because age-related physiological changes and multiple health problems can make them more vulnerable to such reactions,” says Jennie Chin Hansen, CEO of the American Geriatrics Society (AGS).

For example, a commonly used category of pain relievers known as non-steroidal anti-inflammatory drugs (NSAIDs) may worsen heart failure in those with this condition. Older adults are also at increased risk of ADEs because many take multiple medications, which can interact, causing potentially dangerous “drug-drug interactions.”

The late Mark H. Beers, MD, a geriatrician and editor of The Merck Manuals and The Merck Manual of Geriatrics, first published the Beers Criteria in 1991. In 2011, the AGS convened a panel of experts in geriatrics and pharmacotherapy to revise and expand the criteria, based on the latest research. The society plans to update the AGS Beers Criteria every three years.

Fifty-three medications and classes of medications are among those listed as potentially problematic in the 2012 AGS Beers Criteria, which group medications that may be harmful to older adults into three categories. The first category includes 34 medications that are potentially inappropriate because they either pose high risks of side effects or may have limited effectiveness in older adults, and because alternative treatments are available. New entries include “sliding scale insulin.”

The second category includes 14 medications that are potentially inappropriate for older people with certain diseases, risk factors, or disorders because they may exacerbate these conditions. Selective serotonin reuptake inhibitors, which may increase risks of falling in some older adults, are among the new entries in this category.

A third, new category added to the Beers Criteria includes 14 medications to be used with caution in older adults. These medications may be associated with more risks than benefits in older people in general, but nonetheless may be the best choice for a particular individual if administered with caution. Vasodilators are listed as they may increase episodes of syncope in older adults with a history of this condition, and contribute to greater risks of falling.

“These are drugs that studies suggest are potentially inappropriate for older people or should be used with caution in older adults with specific health problems. But responses to drugs vary significantly among older people. And, for some individuals, medications on these lists may be the best and only choice. The Beers Criteria alone should never dictate prescribing, nor should they be used punitively. They are intended to inform thoughtful prescribing decisions,” says Todd Semla, PharmD, MS, co-chair of the panel that the AGS convened to update and expand the criteria.

The Beers Criteria also influence research, the training of healthcare professionals, quality measures, and healthcare policy. The National Committee on Quality Assurance (NCQA) and the Pharmacy Quality Alliance (PQA) have used the Beers Criteria when developing key quality measures regarding pharmacotherapy and the Centers for Medicare and Medicaid Services (CMS) has incorporated the criteria into its evaluation of nursing home compliance with medication-related regulations.

The AGS has received funding from the John A. Hartford Foundation of New York and the Robert Wood Johnson Foundation to help support the development and dissemination of the criteria to the broadest possible audience of clinicians.

Original content Bob DeMarco, the Alzheimer's Reading Room

Saturday, 28 April 2012

Living with Childhood Alzheimer's

Is Cyclodextrin the answer?

Alzheimer's Reading Room

There are only 500 known cases world wide, 100 in the US. Slowly, these kids lose everything.

"All these little things that we take to function, you don't realize until they're taken away," says Laura.

The Hadley's decided they had to do something, so they started the Hadley hope fund - raising money for research. Recent scientific discoveries are giving them hope.

About a year ago the 14 and 11 year old were put on Cyclodextrin, an experimental drug that actually slows the disease.

Bryan states, "They seem to be holding their own, they're not degenerating any more."

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More Insight and Advice from the Alzheimer's Reading Room

How Alzheimer's Spreads Throughout the Brain
Test Your Memory for Alzheimer's (5 Best Self Assessment Tests)
What is Alzheimer's Disease?
What is Dementia?
What’s the Difference Between Alzheimer’s Disease and Dementia
Communicating in Alzheimer's World
How the Loss of Memory Works in Alzheimer’s Disease, and How Understanding This Could Help You
Learning How to Communicate with Someone Suffering From Alzheimer's Disease
Alzheimer's World -- Trying to Reconnect with Someone Suffering from Alzheimer's Disease
Does the Combination of Aricept and Namenda Help Slow the Rate of Decline in Alzheimer's Patients
Driving with Alzheimer's Can Mean Death
About the Alzheimer's Reading Room

Original content Bob DeMarco, the Alzheimer's Reading Room

Friday, 27 April 2012

Alzheimipedia

By Claudia Marshall-Apers
Alzheimer's Reading Room

Here it is, the first ever online interactive guide to Alzheimerese.

Alzheimipedia includes phrases and words that are spoken in Alzheimer's World and what they actually mean in “Real World”. There can be multiple meanings to any given phrase. Like Wikipedia, entries can be made and adjusted by experts in the field (that means you, the caregiver).

I'll start us off with a few entries.

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Alzheimer's World	Real World
I want to go home	I want to feel safe and secure. I am in a place in my memory that was home and this isn't it. Get me out of here.
I'm hungry	I forgot that I just ate. If I had something better to do, I wouldn't be so bored that I have to pass the time eating. I'm hungry.
The mafia boss lives in there(the closet)	The mirror on the door makes it look like there is another room. I am feeling anxious. I am feeling insecure. I am scared. I am confused.
I have to go upstairs (in a single story home)	The map in my brain does not correspond to the actual floor plan. I am in a place in my memory and this isn't it.

Please add your phrases and definitions below.

Claudia Marshall-Apers is the full-time caregiver to her mom, Pauline, who is in the moderate to severe stages of Alzheimer's/dementia. Claudia is a transplant from New York where she was born and raised and now lives in the beautiful landscape of Rio Rancho New Mexico with her husband and 18 and 21-year-old sons, when they are home, along with their dog Cinnamon. Claudia holds a Master's in Art Education and is currently working on a series of artwork about Alzheimer's/dementia.

More Insight and Advice from the Alzheimer's Reading Room

Original content Bob DeMarco, the Alzheimer's Reading Room

Thursday, 26 April 2012

The Aesthetic Life

I guess I've learned to pay attention to what my mom remembers. That helps me know what really matters to her.

By Claudia Marshall-Apers
Alzheimer's Reading Room

Did you ever wonder why the deeply forgetful can remember some recent events and future plans but not others? I wonder that all the time.

Why do some memories form while others fail? Hmmm.

When I was learning how to teach art to elementary school children, I had to learn how we learn, how we remember and how we know.

It turns out that we “know” in many more ways than we would expect.

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Art, for example, is a way of “knowing” the world – both making art and looking at art. We can “know” in many ways apart from reading, writing and talking. We also make stronger memories when two different areas of the brain are involved – words and music together for example. I for one can remember every word of every coffee commercial that was out when I was a child (“Chock full of nuts is that heavenly coffee”...). I found out about the importance of the aesthetic experience – something you experience with all of your senses and faculties and emotions make stronger memories with more connections in the brain.

I guess I knew all of this in theory but then one day, last Fall for the first time in her life, my mom, Pauline, at age 89, fed a horse out of her hand. This was over five months ago. She remembered it that day, the next day, and has talked about it consistently since. She even wrote about it in a letter to her grandson – how gentle the horse was and so nice and he could have bitten off my hand if he wanted to but he didn't.

So, apparently the deeply forgetful can be very rememberful when the conditions are right. They don't remember that they ate breakfast? So what. Maybe the fact that they ate breakfast isn't that important after all. It didn't have an impact. Maybe by forgetting certain things they are teaching us something – what really matters in life at the end of the day.

I guess I've learned to pay attention to what my mom remembers. That helps me know what really matters to her. I try to help her create new memories that can only be formed with all of her senses and emotions I try to help her live an Aesthetic Life.

Claudia Marshall-Apers is the full-time caregiver to her mom, Pauline, who is in the moderate to severe stages of Alzheimer's/dementia. Claudia is a transplant from New York where she was born and raised and now lives in the beautiful landscape of Rio Rancho New Mexico with her husband and 18 and 21-year-old sons, when they are home, along with their dog Cinnamon. Claudia holds a Master's in Art Education and is currently working on a series of artwork about Alzheimer's/dementia.

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Original content Bob DeMarco, the Alzheimer's Reading Room

Wednesday, 25 April 2012

Translating Alzheimer's for Others

“Does Audrey have her hearing aids in?”

By Pamela R. Kelley
+Alzheimer's Reading Room

If you’ve been a reader of The Alzheimer’s Reading Room for any period of time, you know Bob DeMarco’s Venn diagram depicting the overlap between the ordinary world and Alzheimer’s World.

It’s shaded at the sweet spot where we as caregivers sometimes reside, where we understand our roles as care partners better. We learn to communicate more effectively because we’ve gained some compassionate skills while adapting to the challenges dementia imposes.

When my mother moved to an assisted living facility for those with memory loss, I began to see that it wasn’t enough for just me to inhabit the sweet spot. My mother’s care was being shared now with others.

All these new people would have a very different perspective on my mother, Audrey, since they’d not known her essential nature before Alzheimer’s arrived. I had to hope they’d give her the benefit of the doubt when she was being hostile, insulting, degrading or worse.

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I figured I could serve as the bridge that helped them understand and manage my mother at her most difficult. I could translate Audrey to them, and slowly help them take that little step to the left and into the sweet spot of Alzheimer’s World where Mom and I comfortably reside together.

They needed to know that if my mother was snappish or aggravated in the morning, talking loudly and a bit rudely, then the first question they should answer was whether or not she was wearing her hearing aids. If she was not, then she wasn’t hearing anything they’d said, or even if they’d said anything. And she would be angry that they were doing things in her room without telling her about it and asking permission.

Or approaching her too closely before making clear that they meant her no harm. It surprised me how often I arrived in the morning to hear her assigned caregiver report that my mother was in a terrible mood, that she wouldn’t come down to the sunroom for breakfast, or that she wouldn’t take her pills.

The litany of how my mother was a difficulty to the morning caregiver knocked me off kilter for the first few weeks, until I began to notice the pattern. On those mornings when the report was largely negative, Mom often didn’t have her hearing aids in. Or if she did, the batteries were dead. So I began asking regularly, after the report was delivered, “Does Audrey have her hearing aids in?”

It took me a while longer to understand that simply asking wouldn’t prompt the care staff to incorporate this small step into their routine approach to my mother every day. I needed to make sure that this step was incorporated into her formal plan of care as well – written down in the task book that drove the staff activities from shift to shift.

I needed to make sure that the “behavior log” contained within it my hard-won knowledge of how to assess the likely origins of my mother’s difficult behavior, so that full blown upsets could be avoided or nipped early.

If it wasn’t her profound hearing loss that set her on edge because she’d not remembered the hearing aids, then it was likely her arthritis pain acting up. I always knew when my mother was in pain when she winced a certain way, or reached for her left shoulder, or held her lower arm limply across her lap. I knew to look for these signals. I knew Audrey didn’t complain of pain outright, but that if I saw one of these signs and asked her at that moment whether her shoulders hurt, I would get an accurate answer. And I also knew that was the time I would most likely get her to take her pill for the pain, and that otherwise she would resist the pills.

This too was information that needed to be added into that behavior log and plan of care.

Over the ensuing months, I’ve managed to impart quite a bit of information about the unique language that Audrey uses.

Calling someone “Lady” is a sure sign that she believes the individual is being bossy, pushy or nosy. She’s on the road to an upset if her privacy or personal space isn’t soon restored.

In contrast, “Lady Jane” is a term of jocular affection.

This is part three in a three part series.

Also see--
Translating in Alzheimer's World
Alzheimer's Translation Services

Pamela R. Kelley is the full-time caregiver for her mother, after serving as her long-distance caregiver for more than four years. Before her caregiving role took primacy, Ms. Kelley directed an American Bar Association-approved paralegal education program at the University of Alaska Anchorage from within UAA's Justice Center. As she transitioned to full-time caregiving, she prepared a resource manual and presented lectures on long-distance caregiving to her UAA colleagues. She is a 25-year member of the Alaska Bar Association, and concentrated her years of active practice in the areas of commercial transactions and creditor representation in complex bankruptcy cases. Over the years, she has published many articles on topics as varied as cyber-stalking and antitrust law. Ms. Kelley lives, works and writes in Anchorage, Alaska.

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Original content the Alzheimer's Reading Room

Tuesday, 24 April 2012

Alzheimer’s and Spousal Affairs

What are your thoughts on Alzheimer’s spouses who have affairs and justify their behavior by saying, “Well, they have Alzheimer’s and they don’t know?”

By Barbara Pursley
Alzheimer's Reading Room

Yesterday, I couldn’t help becoming intrigued by the table discussion I listened to. (I have changed names for the sake of privacy)

I visited my friend, Mary, and her mother, Alice, who has lung cancer. When I asked Alice about our mutual friend Joyce, she was quick to give me all the details of Joyce’s life. As we sat at the table, Mary was involved in painting driftwood that we had collected on the beach and I was focused on knitting a scarf, but my ears were opened for listening.

Little did I know that asking Alice about Joyce would lead into a conversation that would cause me discomfort.

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Alice continued to share about our friend Joyce when she said, “Oh, Joyce is very happy. She is dating a man whose wife has Alzheimer’s.” Then, Alice began to justify the relationship by saying, “His wife has had Alzheimer’s for several years. Plus, ‘he’ takes good care of his wife and even has a full time nurse for her at their home.” She added, “His children are very upset that ‘he’ is having an affair while their mother is home in bed suffering with Alzheimer’s.”

I listened with intensity while the hair on my neck stood up. My mother passed away from Alzheimer’s and since that time, I have been a passionate advocate. I didn’t like hearing this information, but it spurred my thinking.

Alice didn’t hold back any of her judgments. She said, “I don’t see that he is doing anything wrong. After all, his wife has Alzheimer’s and she doesn’t know.” I felt stunned into silence.

I began to think about the most common wedding vows.

“I, (bride/groom) take thee (bride/groom) to be my wedded (husband/wife), to have and to hold from this day forward, for better, for worse, for richer, for poorer, in sickness or in health, to love and to cherish, ‘til death do us part.”
“I will cherish and respect you, comfort and encourage you, be open with you, and stay with you as long as we shall live bound by our love.”

Some people I have discussed this with believe that this kind of behavior is acceptable. They say, “Why shouldn’t the healthy spouse continue to enjoy their life?

What are your thoughts on Alzheimer’s spouses who have affairs and justify their behavior by saying, “Well, they have Alzheimer’s and they don’t know?”

Barbara Pursley was born in Galveston, Texas and is the author of EMBRACING THE MOMENT. Barabara attended Santa Monica College, studied photography, and worked as a commercial photographer before returning to Texas to care for her mother. Barbara also taught journal writing to women in Texas rehabilitation facilities. She put her God inspired journal entries and photographs into book form in 2009.

More Insight and Advice from the Alzheimer's Reading Room

How Alzheimer's Spreads Throughout the Brain
Test Your Memory for Alzheimer's (5 Best Self Assessment Tests)
What is Alzheimer's Disease?
What is Dementia?
What’s the Difference Between Alzheimer’s Disease and Dementia
Communicating in Alzheimer's World
How the Loss of Memory Works in Alzheimer’s Disease, and How Understanding This Could Help You
Learning How to Communicate with Someone Suffering From Alzheimer's Disease
Alzheimer's World -- Trying to Reconnect with Someone Suffering from Alzheimer's Disease
Does the Combination of Aricept and Namenda Help Slow the Rate of Decline in Alzheimer's Patients
Driving with Alzheimer's Can Mean Death
About the Alzheimer's Reading Room

The Alzheimer's Reading Room

Translating in Alzheimer's World

“What’s she doing?”

“What did she say?”

“What do they think, that I’m dumb?

By Pamela R. Kelley
Alzheimer's Reading Room

When I hear my mother, Audrey, ask these sorts of questions, I know she needs me to translate. I translate the world.

I translate what she sees and hears and imagines from something upsetting to something understandable.

She trusts me. She trusts her friend, Sue. She trusts anyone in a clerical collar. But that’s it.

She’s on guard around all others, and suspects that they dislike her. She announces her suspicions loudly and emphatically. She can be seen as difficult.

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There was her next-door neighbor, Linda.

Linda ceaselessly walked up and down the second floor hallway. She kept her eyes fixed on the middle distance. She occasionally wandered into rooms with open doors. She rarely spoke. But Linda was attracted to the sound of voices, songs and laughter. She frequently came to Audrey’s door when I was around, talking and singing and laughing with Audrey.

I recognized that the sounds of merriment were attractive to Linda. But Audrey was disturbed by her silent appearances. I could hear it in my mother’s voice, just this side of upset. When Linda would enter Mom’s open door, Audrey wanted to know, “What is she doing? This is my room.” When we would pass Linda in the hall, Mom would tell me, “That one hates me. She never talks to me.”

While the latter was true, the former was certainly not. I wondered whether there was a way to help Audrey grow comfortable with Linda’s unavoidable presence and silent, expressionless stare.

I could see that the path to peaceful coexistence was worth pursuing – Linda didn’t deserve to have Audrey yelling at her; Audrey didn’t need to feel disliked or dismissed by Linda’s silence. I needed to interpret Linda’s silences in a way that Audrey would understand weren’t directed at her.

Here’s where a little poetic license is in order. I can tell stories. The story I told Audrey to defuse her suspicion of Linda was pure fabrication. If my mother asked, “What’s wrong with her?” I had a ready response.

“Oh Mom,” I said while holding her eye, wearing my serious face with my eyes open wide. “I heard that she fell.” Pause to let that sink in. “I heard she hit her head.” Pause again, as Audrey raised her hand to mouth in shock and concern. “She hasn’t been the same since.” Pause to watch how that registered. “Now she can’t talk.” That was my fable. I’ve told it numerous times by now.

Audrey asks me, invariably, “But where is her mother?” I report that Linda’s mother passed away. “I think she’s all alone,” I add. After absorbing that thought, Mom announces, “We should do something to help her.”

That’s my mother, though and through. I love this in her. She responds to the misfortunes of others with generosity and kindness. She needs a little help these days to access that impulse, but it remains there. I provide the help. I interpret the world to her in a way that allows her to respond naturally. In my retelling, she has the space and time to come to an understanding of Linda that replaces the conclusions she reached informed principally by the worry and fear and suspicion that are her constant companions.

My mother’s interactions with her neighbors are less upsetting to her than those with some of the care staff at her residence.

I’m keenly aware of my mother’s hearing deficit. Often, her question “What did she say?” is simply a reflection of the fact that someone spoke in such a way that Mom couldn’t hear. Maybe the speaker was talking too softly. More often, someone has spoken too quickly. Or was talking while walking, or looking elsewhere. Or maybe the comment was directed toward my mother before my mother recognized that she was being addressed. If I’m nearby, my mother turns to me to answer the inevitable,

“What did she say?”

At one time, I would have simply repeated the message. But then I began to recognize that I was missing an opportunity if that’s all I did. Wasn’t it better for my mom, in the long run, if the staff members spoke for themselves in ways comprehensible to Audrey? These days, I bridge the communications divide differently. I tell my mother, “Mom. I think Anna wants to tell you something…”

This does two things.

It gets my mother’s attention by using her name. And it gets the staff member’s attention by using hers as well. The next thing I do is invite the staff person to try again: “What was that you were saying?” ‘Could you repeat that more slowly?”

I know I’m breaking up the rhythm of the task-oriented staff, those who at times would prefer to quickly just do something in my mother’s room rather than go through the process: announce yourself, confirm that you have my mother’s attention, simply state what you will do or what you need, ask permission, keep smiling, slow down, await her reply.

But it’s the difference between investing a minute or two at the outset to reassure, and avoiding five or ten minutes calming the agitation and upset born of my mother’s confusion, insecurity and fear. As the care staff begins to learn that this method works best for Audrey, her ease with the staff increases and her naturally warm and helpful temperament comes forward.

As the translator, my job is to show Audrey that the other person isn’t a threat – someone best responded to with hostility and suspicion.

My translation services allows the more lovable woman I know to be more evident to those who have only known her through her experience of this illness.

By translating threats and dangers into normal, benign interactions, I know that through repetition I’m making those hours when I’m not by her side easier for Audrey in an important way.

This is part two in a three part series, also see --
Alzheimer's Translation Services
Translating Alzheimer's for Others

Pamela R. Kelley is the full-time caregiver for her mother, after serving as her long-distance caregiver for more than four years. Before her caregiving role took primacy, Ms. Kelley directed an American Bar Association-approved paralegal education program at the University of Alaska Anchorage from within UAA's Justice Center. As she transitioned to full-time caregiving, she prepared a resource manual and presented lectures on long-distance caregiving to her UAA colleagues. She is a 25-year member of the Alaska Bar Association, and concentrated her years of active practice in the areas of commercial transactions and creditor representation in complex bankruptcy cases. Over the years, she has published many articles on topics as varied as cyber-stalking and antitrust law. Ms. Kelley lives, works and writes in Anchorage, Alaska.

More Insight and Advice from the Alzheimer's Reading Room

Original content Bob DeMarco, the Alzheimer's Reading Room

Monday, 23 April 2012

Alzheimer’s and the Truth from Both Sides

Truth is a funny thing. There is truth in ‘our world’ and there is truth in the ‘Alzheimer’s World.’ Which is the ‘real truth?’

By Carol Blackwell
Alzheimer's Reading Room

Definition of truth.

(1) : the state of being the case : fact

(2) : the body of real things, events, and facts : actuality

(3) often capitalized : a transcendent fundamental or spiritual reality b : a judgment, proposition, or idea that is true or accepted as true c : the body of true statements and propositions 3a : the property (as of a statement) of being in accord with fact or reality

Truth is a funny thing. There is truth in ‘our world’ and there is truth in the ‘Alzheimer’s World.’ Which is the ‘real truth?’

It depends on which world you are in, I think. What is ‘real’ to me is not necessarily ‘real’ to my husband, Bob. The truth of both worlds is that we love each other and are trying to do what is best for each other.

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Carol’s Truth

My name is Carol Blackwell. My husband, Bob, was diagnosed with Alzheimer’s 5 and a half years ago. He did well—with the help of Aricept and Namenda—for the first 3+ years. He started a small photography business, took classes and we traveled a lot.

In February of last year Bob began a steeper cognitive decline. We can’t travel anymore, and he seldom takes photos. He can’t drive which is a source of constant frustration for him. Bob no longer remembers he has Alzheimer’s and I think that is a blessing. He used to worry a great deal about the progression of the disease and now he isn’t sure what it is. He now believes that he is young, newly graduated from college, and should be able to get a job and ‘do something meaningful’ with his life.

Bob attends day care three days a week and loves it. He is a strong extrovert and enjoys being with people. The day care is great---there are many activities and lots of singing and they often take ‘field trips’ which the staff says he loves. (They also say he loves to dance and I have pictures to prove it)

However, Bob does not seem to be happy at home anymore. He is unable to settle down and paces a lot. He has trouble grasping what I am trying to tell him and becomes angry at what he thinks I am saying, even though what I am trying to communicate is something else.

For example, our friends visited last month and I said to him, “Bob, why don’t you shave and take a shower so we can hike with our friends?” He looked at me in shock and said, “How can you say something like that about them. They are nice people”. ???? It does make it hard to communicate when one person can’t process what the other is saying!

Bob can no longer do household tasks, although he often tells me he wants to help. He frequently wants me to take him somewhere, but can’t express to me where he wants to go or what he wants to do. He tells me that he is ‘afraid’, but he can’t tell me the source of the fear. I am quite sure that he often does not know who I am, although he knows I am Carol and that I take care of him. However, once in a while he will look at me and say, “Oh, it’s you! I didn’t recognize you. You know I love you.” ???

After a ‘sort of’ conversation the other day, I realized I needed to go deeper into his Alzheimer’s World to find the source of his discontent and the following narrative, although not his actual words, reflects comments he made to me many times.

Bob’s Truth

“My name is Bob Blackwell. I am fine. People keep talking to me about this Alzheimer’s disease, but I don’t know what they mean. I am fine.

I attended the University of Georgia and I graduated not too long ago---I can’t remember when, but it doesn’t seem long ago. I want to get a job, get married and have children. I want to make a difference and have a career like everyone else, and I am frustrated that I don’t get any opportunity to do this.

I live with an older woman who is nice and I like her most of the time. Her name is Carol. I think she must be my mother because she is always telling me what to do. She always talks about ‘shaving’ first thing in the morning, but I am not sure what that is.

She tells me to take a shower a lot and sometimes I do. She lays out clothes for me but I don’t always wear them. I can pick them out myself and I get irked when she tells me I am wearing too many layers and shouldn’t wear the white shirt over the other clothes. She doesn’t let me drive and I know I can because I drove when I went to Georgia. I am a good driver, but she tells me that ‘they’ won’t let me drive because of this Alzheimer’s thing. It is unfair. I don’t know why they are doing this to me. I have never done anything to them.

I do like the woman and she does a lot for me so I try to be kind to her and I know you must help and respect your mother. I keep trying to tell her that, while I like her, I want her to take me somewhere so I can get a job.

I do go to an activity center and there are some nice young women there, about my age. I like them and would like to find someone to date. I am a little worried about Carol, though. I have told her I know I am her son and owe her respect, but she gets upset when I say that, tells me she is my wife, starts crying, and usually leaves the room.

I feel really awful when she does this. I did tell her I think she has a mental problem and needs professional help. For some reason, she thought that was funny. I don’t think it is funny. I want a life…..”

So, here we are, each of us telling the ‘truth’ from our side. It didn’t ‘make us free’ but I do have a better understanding of his viewpoint and I will try and make that work to his advantage. I will try and be more patient and more understanding.

I can’t promise I won’t be still upset. I do find the more I understand ‘his truth’, the better I react to it.

And so the journey continues……one we didn’t want to make, but here we are and still together……..

Carol Blackwell lives in Northern Virginia with her husband Bob. Bob was diagnosed with Alzheimer’s in 2006. Carol is a part time leadership coach and instructor. Both Carol and Bob are active advocates in the fight against Alzheimer's disease. Bob and Carol also blog on the USA Today website.

More Insight and Advice from the Alzheimer's Reading Room

Original content Bob DeMarco, the Alzheimer's Reading Room

Saturday, 21 April 2012

Alzheimer's and Dementia Science News 135

Guide dogs for the mind, the holy grail, and more.

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Guide dogs for the mind to fight dementia -- Alzheimer's Scotland
Animals will help Alzheimer's patients remember their medicine and steer them through the day.
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Elan (ELN) chases a holy grail of Alzheimer's treatment: Prevention -- Fierce Biotech
After struggles to develop an effective remedy for Alzheimer's disease, Elan's (ELN) support of research at Cambridge University could unlock targets for a drug that offers a preventive treatment for the memory-stealing disease and other illnesses involving misfolding proteins in the brain.
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Single-neuron observations mark steps in Alzheimer's disease -- Technische Universitaet Muenchen
Studying a mouse model of Alzheimer's disease, neuroscientists at the Technische Universitaet Muenchen have observed correlations between increases in both soluble and plaque-forming beta-amyloid – a protein implicated in the disease process – and dysfunctional developments on several levels: individual cortical neurons, neuronal circuits, sensory cognition, and behavior. Their results, published in Nature Communications, show that these changes progress in parallel and that, together, they reveal distinct stages in Alzheimer's disease with a specific order in time.
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Staying Active Fends Off Alzheimer's, Even In People Over 80 -- NPR
Activity cuts the risk of Alzheimer's disease and slows cognitive decline, even in the very old, according to a new study.
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Alzheimer's Disrupts Brain Networks -- ARR
Precise measurement of changes in brain networks are critical to understanding Alzheimer's and will likely be important in models of other neurodegenerative disorders.
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Neurologists Need To Assess Whether A Person With Dementia Can Make Decisions -- Medical New Today
Luis Carlos Alvaro, a clinical neurologist at the Hospital of Basurto (Bilbao) and lecturer at the University of the Basque Country (UPV/EHU), has had an article published on the capacity of patients with dementia to make decisions.
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Genes associated with brain aging -- Inserm (France)
The hippocampus is a brain structure with a volume reduction with age is associated with memory problems. The acceleration of this phenomenon is a manifestation of Alzheimer's disease. Through an international collaboration involving French research teams (1), genetic mutations associated with reduced hippocampal volume have been highlighted. These results were obtained through epidemiological studies analyzing genomes and brain MRI of 9232 participants aged 56 to 84 years. In France, about 2000 MRI were performed through the study of 3 Cities (2). The results of this work are published April 15, 2012 in the journal Nature Genetics.
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More Insight and Advice from the Alzheimer's Reading Room

Original content Bob DeMarco, the Alzheimer's Reading Room

Alzheimer's Disrupts Brain Networks

Precise measurement of changes in brain networks are critical to understanding Alzheimer's and will likely be important in models of other neurodegenerative disorders.

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I found this research interesting because the focus is on the brain as a network. One of the problems in dementia is the disruption of the functional connectivity of brain regions.

Earlier today I wrote, Alzheimer's and Learning How to Trust, and basically what I was saying is that Dotty compensates for these disconnects by stringing together diverse information in her brain and weaving some rather "tall tales".

In my story about my brother, Billy, I mentioned that Dotty talked to him on the phone. Not long after, she told someone he had come into the condo, looked around and gone back home. So you could say, she remembered talking to him and that was about it. The rest of the story was made up. It almost seems like she grabs a few pieces of a puzzles and puts them together. Not tightly like when you are doing a puzzle, but pulls them together into a jumble to make a story. To us the jumble makes no sense, but to Dotty the same jumble makes perfect sense.

Understanding of the diverse parts of the brain network could lead to a better understanding of Alzheimer's, and a possible treatment.

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Alzheimer's plaques disrupt brain networks

Scientist studying the way Alzheimer's takes root in the brain have identified important new similarities between a mouse model and human Alzheimer's.

Researchers at Washington University School of Medicine in St. Louis have shown that brain plaques in mice are associated with disruption of the ability of brain regions to network with each other. This decline parallels earlier results from human studies, suggesting that what scientists learn about Alzheimer's effects on brain networks in the mice will likely be transferable to human disease research.

The study, published in the Journal of Neuroscience, is among the first to precisely quantify the effects of Alzheimer's disease plaques on brain networks in an animal model. Until now, scientists studying Alzheimer's in animals have generally been limited to assessments of structural brain damage and analyses of brain cell activity levels.

"Precise measurement of changes in brain networks are critical to understanding Alzheimer's and will likely be important in models of other neurodegenerative disorders," says senior author David M. Holtzman, MD, the Andrew B. and Gretchen P. Jones Professor and head of the Department of Neurology. "For example, we can now test whether blocking Alzheimer's plaques from building up in the mouse brain prevents disruptions in brain networks."

In humans, scientists assess the integrity of brain networks by monitoring cerebral blood flow with functional magnetic resonance imaging scans. When the brain is idle, blood flow rises and falls in sync in brain regions that network with each other, a phenomenon called functional connectivity. These links are believed to be an important component of normal brain activity. In humans, problems in functional connectivity appear to presage the development of dementia.

Applying the same technique to mice can be very challenging, according to Holtzman. Instead, researchers used an approach for monitoring brain blood flow in mice recently developed by the lab of Joseph Culver, PhD, associate professor of radiology at Washington University. The technique involves mounting a ring with light-emitting diodes on the head of a lightly anesthetized mouse. Sensors in the ring monitor light that is reflected back from hemoglobin molecules flowing through blood vessels in the brain. This data can be used to quickly assess blood flow.

Researchers applied the approach to a mouse model of Alzheimer's disease. They found that the brain regions with the strongest network connections in young mice developed the most plaques as the mice aged. As plaques accumulated in these regions, functional connectivity declined. Scientists have already found similar results in humans using functional magnetic resonance imaging.

A link between stronger brain networking in young mice and increased signs of Alzheimer's in older mice may seem contradictory, but it echoes earlier studies in Holtzman's laboratory that linked higher activity levels in individual brain cells to increased plaque deposition.

Holtzman and others have speculated that the types of information and functions encoded in the activities of brain cells and networks may affect their impact on Alzheimer's risk. Epidemiological studies have shown that brain stimulation, such as puzzles, reading or learning, is associated with reduced risk of Alzheimer's. Leaving the brain idle for long periods of time may increase risk.

The mice studied in the research have a mutated form of a human protein, Alzheimer's precursor protein, that causes them to develop brain plaques. Other mouse models have mutated versions of a protein called tau that lead to the development of neurofibrillary tangles, which are another hallmark of Alzheimer's disease.

Holtzman, Culver and colleagues plan to test functional connectivity in mouse models with mutated versions of human tau. The results may help determine the effects of additional types of protein aggregates in the brain, according to Holtzman.

"Important new insights into the normal and dysfunctional human brain have been made via studies of functional connectivity," Holtzman says. "Being able to analyze brain function from a similar perspective in animal models, where we have much more freedom to manipulate genes and proteins, should be very helpful in our efforts to understand and treat complex conditions like Alzheimer's disease."
_____________________
Bero AW, Bauer AQ, Stewart FR, White BR, Cirrito JR, Raichle ME, Culver JP, Holtzman DM. Bidirectional relationship between functional connectivity and amyloid-beta deposition in mouse brain. Journal of Neuroscience, March 28, 2012.

Funding from the National Institutes of Health, the Medical-Scientist Training Program, the Ellison Medical Foundation and the Cure Alzheimer's Fund supported this research.

More Insight and Advice from the Alzheimer's Reading Room

Original content Bob DeMarco, the Alzheimer's Reading Room

Friday, 20 April 2012

Recommendations of the Advisory Council on Alzheimer's Research, Care, and Services

Health and Human Services (HHS) should launch a nationwide public awareness campaign to increase awareness and to promote early detection of Alzheimer’s disease.

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On April 16, the Alzheimer's Advisory Council approved a comprehensive set of recommendations that would, if accepted by the Department of Health and Human Services (HHS), complement the current draft of the National Plan to Address Alzheimer's Disease.

The National Alzheimer's Project Act (NAPA) was passed unanimously by Congress and signed into law by President Obama.

The current list of recommendations can be seen below

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Advisory Council on Alzheimer's Research, Care, and Services

Clinical Care Subcommittee Recommendations

Laurel Coleman, Chair
Eric Hall
Helen Matheny
Bruce Finke
Shari Ling
Joan Weiss

Recommendation 1
Health and Human Services (HHS) should launch a nationwide public awareness campaign to increase awareness and to promote early detection of Alzheimer’s disease.

Recommendation 2
Redesign Medicare coverage and physician reimbursement to encourage diagnosis of Alzheimer’s disease and to provide care planning to diagnosed individuals and their caregivers.

Recommendation 3
HHS should develop quality indicators for the care and treatment of individuals with Alzheimer’s.

Recommendation 4
HHS should provide grants through the Center for Medicare and Medicaid Innovation (CMMI) for medical home pilot projects specifically targeted at improving medical management for individuals with Alzheimer’s disease, including management of co-existing medical conditions and coordination with family and community care providers in all settings (in-home care, long-term care, and inpatient hospital care).

Recommendation 5
HHS should form a blue ribbon panel of experts to recommend one or more models of palliative care for people with advanced dementia, including eligibility criteria and financing mechanisms, and provide grants through the Center for Medicare and Medicaid Innovation (CMMI) to implement and evaluate the models.

Recommendation 6
HHS should create a specific grant round of pilot projects through the Center for Medicare and Medicaid Innovation (CMMI) to implement and evaluate ways to reduce potentially preventable emergency department visits and hospitalizations for individuals with Alzheimer’s disease and other dementias, including emergency department visits and hospitalizations from home, assisted living facilities, and nursing homes.

Recommendation 7
Develop a public-private partnership to develop and evaluate ways to improve hospital care and transitions of care for people with Alzheimer’s and other dementias, including training approaches and proposed quality measures.

Recommendation 8
Expand funding and incentives for health care providers to become more knowledgeable about dementia and to encourage individuals to pursue careers in geriatric specialties.

More Insight and Advice from the Alzheimer's Reading Room

Original content Bob DeMarco, the Alzheimer's Reading Room