Manifesto For Radical Inclusion

There is a growing awareness and increased discussion about the inclusion and treatment and stigmatizing of people with Dementia/Alzheimer's. I agree with the move in general but think I have a way to go to fully understand its parameters and/or to embrace it fully. But I am working on it! I am working on it.

As an elementary school teacher I was always sensitive to establishing reading groups according to ability. In fact I adopted an approach which used popular children's literature as the vehicle for teaching reading (instead of the "Basal Reader") and let the students select which book group they wanted to be in based on story content/topic.

If the reading level was way beyond their skills, I would advise the student as well as the parents of the disparity but if all parties, me included, were willing to take the risk and to work extra hard, the student could have the chance to read a "too difficult" book as long as they were able to keep up with the group assignments (which could be tailored) and discussions. The program was successful in most cases. Sometimes a student would request a different book after trying and would feel successful for having tried, not feel a failure for having to change groups.

When I taught, identifying student needs by name was constantly changing. It was a standing joke, "I wonder what they'll call it this year?" For example: on the teacher side it moved, not necessarily in this order, from Speech Therapist, to Speech Teacher, to Speech Pathologist, to Speech Impaired Instructor, and more.

In New York City, I worked with "Retarded Children" at an organization called AHRC, Association for the Help of Retarded Children. Many years later, a new neighbor put me in my place at her dinner table when I replied, "Retarded Children," after being asked, "What level of students did you work with?" 

She explained her crusade, having a child diagnosed with Downs Syndrome, to get people used to "Child First" language. So drop the "Retarded" put "Child First" then use a more agreeable, less stigmatized name like "Developmentally Disabled." So now I can do it easily but in the beginning I had to think about, and stumble over changing from "I taught Retarded Children." to "I taught Children with Developmental Disabilities."

I hope that by now AHRC has changed its name!

But this concept of full inclusion for people diagnosed with Dementia/Alzheimer's has been upsetting my thinking. I am working on trying to understand how that might be possible. And I am glad that my thinking is upset as that means I am pushing past my comfort zone. But I am not sure where I will end up or what I might've to say in the end about "Full Inclusion."

In the beginning, after the diagnosis, we continued living our life as "normal." But the definition of normalcy started changing and before I knew it, and as he advanced with the effects and changes in his brain, thinking, processing, cognition, language etc I realized that my "normal" was very different from his "normal."

I was very happy to live with his "normal" when I could understood it (not always easy) and when it was not moving so fast that I could keep track of it. But often his "normal" was not safe, not healthy for him, not in his best interests, not possible and often he did not even know what "normal" was and wasn't able to express it for himself.

I never to this day lost my ability to love him, to respect him, to take his feelings into mind but sometimes it did get to the child like: "Because I am the parent and your are the child." I never said this but it did mirror those type of interactions.

With Gregory, as he slowly lost his abilities and needed more and more support, it was not possible to fully include him in all activities. We continued going to the Opera, or theater, or entertained at home or went out to restaurants with friends or traveled in the U.S. or Europe or Mexico. But slowly the inclusions had to change.

Often it would take longer and longer for him to recover from an active party so I would be more understanding and expect less of him. On vacations, sometimes of a month's duration, Gregory would be active, energized, and happily enjoying his time during the vacation but when we came home "reentry to routine" would become more and more difficult and confusing for him as well as for my knowing how to handle his needs.

Gregory was not aware of many of the details of his changes so I had to be the decision maker. I did it with respect, good judgement, keeping him in mind. I always made decisions after talking to him about it, sharing what I thought were the pros and cons, and helping him understand my thinking. But in reality I was the ones making the decisions, not him. Luckily he deferred to me and knew I had his best interests in mind.

A friend of ours noted that even with Gregory's reduced abilities, I always thought of us as a couple: we decided, we will do this, we will do that, what we have decided is...

I had to decide that he could no longer drive the car, I had to decide when we needed to employ a "Companion" to go on walks with him or to spend the day keeping him company when I could not be home. I decided that thriller or violent movies or ones with too much action were not good for him so neither of us watched those types. Eventually I decided what he would order at the restaurant because the choosing was causing him discomfort. I made decisions easily if only because I know him so well.

When, as the result of Dementia/Alzheimer's, a person can no longer take a realistic view of their world, of their abilities, of their perceptions of things ... how can you go for "Full Inclusion?" When he can no longer write, why include him in a writer's group? When he can no longer paint, try easier painting methods, eventually move to finger painting, but when even that doesn't work, I do not think including him in a painting group is a good idea.

Gregory went through the above changes in ability with my being able to support him and be creative about our approach. He is now unable to do most things, especially he cannot initiate things by himself. So instead of "Full Inclusion" I am happy to find a "Reduced Inclusion" type of activity that he can still enjoy, even if I do all the work for him.

With Gregory's language so far gone that he cannot discuss his needs and cannot even process internally his thoughts or needs, I have decided on anti-psychotic drugs to help keep him contented and happy and not fearful of things like getting his feces/urine soiled pants changed, or from fighting even the most loving sponge bath instead of a fearful water shower. 

The use of drugs is frowned on by many people, and I would never have Gregory "drugged into a stupor" just to keep him quiet or to make him easier for staff to handle. But drugs when administered thoughtfully serves a purpose. He needs to get changed and he needs to get cleaned up so why make him fight through it as opposed to numbing the edge of frightening activities that must be accomplished?

He doesn't have to be happy all the time, and frightening activities should not be forced but for Gregory life is frightening, and I will always be there for him and make sure that I do what I can to make his life easier and more friendly, even if I have to make decisions that might "alter" who he is. In some ways with the Dementia/Alzheimer's at this advanced stage, he is no longer who he was and I am the one who can change my expectations about how he spends his days and what makes sense for him. I know he would trust me and if the tables were turned, he would do the same for me in that same loving caring way!

He is content in his wheel chair, is content on "going for a walk" in the chair around the unit or outside in the garden. He likes to listen to music in the room or on his headphones, he enjoys "South Pacific" the musical on DVD. He likes looking at photos of family and having me read aloud to him, even if he doesn't understand all I read. For Gregory, total inclusion, is living a greatly reduced, expectation from others free, safe and happy (even if drug altered) existence and I am OK with that.

More thinking is necessary but so far this is what I think. "Full Inclusion" is not possible when the disease affecting a person is of the brain, requires thinking, problem solving, discrimination, generalization, cognitive skills, etc etc etc, especially when those skills are no longer available to the person. Is it fair to hold high expectants for a person when mentally those expectations cannot be met.

Earlier in Gregory's diagnosis, when we would run into a stumbling block, like his wanting to read a book but not remembering what he read (which actually was OK - who cared if he didn't) but also not remembering to turn a page or mark the page he was on, or remembering how to use his reading glasses, even with my help, and then getting frustrated over those lacks, I would get to frustrated with him and at myself for not being able to solve his problems. Rather than letting him stew over reading his book, I started reading aloud before bed. This helped. But this is reduced inclusion as far as I can tell.

I would try to explain to friends and family what it was like. Gregory would want me to help him with his reading but he couldn't understand why it wasn't working and couldn't understand my help. "It is," I would explain, "like your son pleading and pleading with you to teach him how to ride a bicycle like the other kids in the neighborhood but not being able to because he was born without arms or legs."

You can pull him in a wagon, you can safely drive him in a seat on your bicycle, you can run along side him on a stylized bicycle of his own ... but you never can really teach him how to ride a bicycle in the way he wants you to!" What can you do but live with your sorrow and try to compensate in other ways. He will never be able to be included fully in a bicycle race with the neighborhood boys no matter how hard you try.

 I'm sure you know I'll be continuing to think about this and sharing my progress here at the BLOG. Come back and visit.

http://changingaging.org/blog/manifesto-for-radical-inclusion/

Haunting (Part 1 of 2)

First let me explain how residents of Lieberman's Fifth Floor spend their waking time.

After meals, and during the day, all residents are moved from wing to wing for the various on unit activities like exercise, music, movies, etc. Moving is in itself an activity which allows for a brief "ride" providing a different environment in which to spend the next few hours.

The moving is called "Transport." This example will describe moving to Wing A for a movie after lunch. All residents are in dining room at various stages of having finished their noon meal.

Some residents are able to walk, walker, or wheel chair kick themselves around the place safely. These residents are able to do so freely. They are encouraged to join the group at some activities, required to participate in others, but for the most part can be on their own if they choose.

Those who are a "fall risk" or are not mobil get their wheel chair pushed to the next destination. One RCA (Resident Care Aide) starts the transport by pushing a resident to Wing A and then stays there as "Guard." The other RCAs push the residents to Wing A and return to the dining room to get another resident.

Meanwhile yet another RCA has remained in the dining room until the last resident is finished eating and either is out on their own or pushed to Wing A. Should add here that often the nurses, social worker, activities director, and volunteers help as needed with the process of "Transport."

Once everyone is in Wing A watching the movie (or sleeping or staring or mumbling or whatever) another RCA becomes "Guard" for the next 30 minutes while the others are freed up either to change those residents who need it, attend to other needs like helping a resident shower, or they are able to get lunch for themselves and take care of other duties around the unit.

Sometimes, like during music or Oneg Shabbas, all of the RCAs join in and the activity is quite fun, active and reflects the "Community" that the unit is to residents, visitors, and workers as well.

Let me add one variation, if a resident has a private care helper or a visitor, that person can transport and/or decide where to go or what to do. Sometimes when I am there, instead of going to "music," Gregory and I will go to his room to visit or watch his TV. Often visitors take the resident out into the garden or to an all building activity like a concert.

With this picture of "Transport" in your mind, and with your wondering why the title of this post is "Haunting," I will keep you hanging until the next post.

Pretend

Sometimes "PRETEND" is a wonderful thing to do! Today the Lieberman Center (which contains a floor each for End of Life, Cardiac, Rehab, Alzheimer's, Assisted Living, and Independent Living) had a dog show called "The Lieberminster."

All kinds of dogs (belonging to residents, families, volunteers, employees, staff, etc) participated in a dog show in the main social hall on the first floor. Several hundred residents (in all states of ability and awareness) and their families joined in the fun.

Chairs, wheel chairs, beds, and other strange looking machinery congregated in a circle around the center "show floor." A table of judges awarded prizes. Various award areas included among many: best trick, nicest coat, cutest dog, best behaved, owner/dog look alike, and shyest.

Throughout the show, the dogs were walked around the floor so residents could get a close up look and possibly to pet them. Every now and then a minor scuffle between dogs (and once between residents) broke out.

The "dog handlers" were all amateurs. The event, while well organized, fluttered and stopped depending on the goings on and/or needs of the residents. The "parade music" was sometimes too loud and sometimes too soft. I am not sure how alert the judges were, or how discriminating for that mater. The awards were blue paper circles with paper ribbons attached and magic marker printed categories.

Many of the residents were looking in the wrong directions, or slumped over asleep, or talking to themselves, or just not present. Many of the residents were smiling, attending, petting, laughing, and having a generally good time.

Refreshment included make-it-yourself powdered hot chocolate and wafer cookies.

The beautiful thing about this is that it took place as an important "something to do." Many people were cheered up. Advertisements were posted on each floor and on the elevators. People looked forward to the event and discussed it (if able to do so) over dinner. The residents felt a little better, the families who attended felt a little better, and my guess is that the dogs felt a sense of altruism!

So if this was only a PRETEND dog show, and if much of it was past the ability or attention span of many of the attendees, it moved me with its respect for fellow humanity and the recognition that each human life, no matter how diminished; is worthwhile, to be valued, to be loved.

The following is an e-mail to Gregory's new companion. We are excited about his joining us and are hopeful that it will work well. In the beginning, the key to success is lots of communication between me (the employer) and the companion about what to expect as well as how things go when with Gregory (the client.)

A

Enjoyed dinner with you last night. 

In the beginning you and I will be communicating a lot about how to work with Gregory. As I mentioned it is important not to talk or whisper behind his back. I mentioned that in the beginning after each time you are with Gregory, I'll walk you to the elevator "to get the mail" and we can check in about how the day went. You should feel free to ask questions and I will fee free to inform and comment. Also feel free to e-mail me afterwards. 

You can text me when with Gregory and if I do not respond within a reasonable amount of time please follow up with a call. Sometimes I do not hear the text "ding." 

Not knowing how to handle a situation isn't as important as discussing how it might have gone. 

Primary is Gregory's safety followed closely at hand by his happiness/contentedness and all done with respect. I know you understand that but want to mention it again.

Things you can do include:

going for a walk in the neighborhood, on campus, to the lake. You need to keep an eye on how he is holding up, especially in hot weather, as he is not able to monitor that for himself. There are small metal water containers in the refrigeragtor with a belt hook. Please make sure he takes one when you go for a walk (and also that he doesn't put it down accidentally on a bench and leave it behind. Those buggers are expensive.

browsing Barnes and Nobel.

5:00 coffee and cookies are a must. (I'll show you how to use the coffee machine.)

going to Starbucks for his 5:00 coffee.

swimming downstair as LA fitness. (I'll walk you through this.)

working together on a LEGO building or on a jig saw puzzle.

looking through books/magazines (by himself or sharing them with you.)

listening to music. (I'll teach you i-tunes)

sitting on the balcony or going down to the roof top garden.

whatever he wants to do by himself. 

take a nap (you can also!)

watch TV or a DVD

any other ideas you may have (be spontaneous or check with me.)

NOT OUT OF THE NEIGHBORHOOD

You do not have to occupy his every moment and should feel free to work on your own stuff now and then. I'll give you the wifi password so you can get online. Just quiet time together can be wonderful.

Ask now and then "Do you have to use the bathroom?" especially when you are about to go out for a walk.

When you look through books or discuss buildings you probably know by now that he is not too good with language. The ideas and knowledge are all there in his head but he cannot get the words and/or associations out for proper communication. 

One idea is that you can comment on what you see and he can confirm. Be careful asking too many questions because he cannot process or communicate and that may lead to frustration. I find that our best days are ones that are somewhat zen, just being one with our environment and place. I'll comment and tell my stories AS WELL AS his.

I'll let you know when we are ready for a cooking adventure with you and G shopping and preparing dinner. First I'll "walk you around" the kitchen and show you where things are.

Not sure if you'll encounter this but if he becomes concerned about something you might say something like, "We'll talk to Michael about this later." or "I'll check with Michael." or "I am sure it will all work out." I have found that white lies, distraction, and redirection also help.

I am sure there will be more later 😄

m

Boredom

Every now and then I receive an e-mail from Caring.Com http://www.caring.com with an article which I find so helpful that I want to share it here. 

This article which I have reproduced here, dealing with boredom, was something I was aware of Gregory beginning to deal with and I have been working to alleviate boredom for him. It had not yet clicked with me that I could help reduce it more for Gregory when it came to letting him help around the house.

I have been able to find new activities for him like reading a newspaper (when his computer skills left,) or coloring in mandalas (which presented a more spiritual activity when compared to child like "coloring.) I change the complexity of jigsaw puzzles which he still loves to do. He still reads so I help him find books and we have subscribed to magazines with lots of pictures. He has several favorite perpetual calendar type books which features a beautiful photograph or architectural building each day and we have been using those for several years now.

We go out with friends, do a lot of entertaining at home, attend theater and opera, he has two companions with whom he is able to be out and around, we just began structuring his ability to go swimming in the building's pool, have our favorite TV shows, watch movies from NETFLIX or by streaming from our cable provider.

There is so much that he used to be able to do life skill wise that he can no longer do. So I pick up the slack and create a life for both of us. Often it is just easier for me to do the task then to try to explain it to Gregory. So I shop, clean, cook, fix, decorate, cut flowers, etc.

What I haven't been doing is going out of my way to figure out how to continue to include him in helping with our daily activities in a way that matches his declining abilities. I will begin to do so as of today with the motivation provided by this article.

Hi mhorvich, Here's a risk that's often not on caregivers' radar but that can influence the mood and, in turn, behavior of a loved one with moderate-stage dementia: Boredom. You may feel you have 10,000 things to do in your day, but that's not usually the case for someone struggling with memory loss and other changes. Favorite activities, from reading to hobbies, are often abandoned as they become frustrating; friends may become scarce. And your loved one has also largely lost the ability to initiate new things to do. Although playing social and activities director adds to your workload, it may reduce behavior problems that boredom can trigger, such as aggression or anxiety. You don't need a huge menu of possibilities. Many people with dementia are content repeating a handful of tasks or satisfying activities. How to Keep Someone With Alzheimer's or Other Dementias Busy and Active By Paula Spencer Scott, Caring.com senior editor Successful activities for someone with Alzheimer's or other dementias Keeping busy stimulates the brains of people with dementia while boosting a sense of usefulness and accomplishment. But they lose the ability to select satisfying activities and follow through on them -- so you need to initiate things to do. Too much idle time can make anyone feel lonely and unproductive, raising the risk of depression, agitation, and anger. Build on activities the person has always enjoyed. A bridge player may no longer be able to keep up, but she may enjoy holding cards and playing a simpler game, such as Old Maid or Solitaire. But introduce new ideas, too, to see what "clicks." Aim for the "sweet spot" -- not too easy, not too hard. If an activity is too simplistic or childish (like coloring books for kids), the person might feel insulted or bored. If it requires remembering sequences or is otherwise above the person's cognitive level, it will frustrate and turn her off. Take common changes of dementia into account. The attention span shortens. Changes in recent memory make it hard to follow activities with multiple steps or instructions (such as cooking). Less self-critical people with dementia may be more open to art. Musical ability tends to be very well retained. Take glitches in stride. Don't be a stickler for things being done the "right" way or according to rules. If it bothers you that dishes are rinsed improperly, for example, redo them yourself later without comment. The main consideration should be how the activity makes the person feel: involved, purposeful, successful. Look patient, act patient, be patient. Impatience or anger tends to make the person with dementia anxious or balky. Don't give orders and make suggestions. Watch your body language, too: She'll be more tuned in than you might think to a knitted brow and heavy sighs. What helps: encouraging comments and realistic praise (without talking down or using an exaggerated voice), saying thanks where appropriate. Don't challenge or argue. Avoid asking "Why" when something goes awry. People with dementia likely don't know why they did something peculiar (like store a paint set in the refrigerator). Gently suggest an alternative: "I don't think the paint should get cold, so let's store it here on the desk." Rational arguments are useless because the person's emotions are stronger than her logic. Make activities routine. If an activity is a hit, do it every day or two. Or do the same thing, slightly modified: folding towels one day, sheets the next. Pursue categories of activities at about the same time every day (physical or outdoor in the morning, quiet handiwork after lunch) to add comforting structure to the day. Great physical activities to try with someone suffering from Alzheimer's or other dementias Household work Rinsing and drying dishes or loading a dishwasher. Folding laundry. Matching socks. Dusting. Vacuuming. Watering plants. Arranging flowers. Peeling potatoes or apples, snapping beans, shelling peas, husking corn. Washing vegetables, kneading bread, making salad, stirring pots. Decorating cookies, cupcakes, cakes. Simple mending, such as replacing buttons. Polishing silver, polishing shoes. Washing windows (but not on a stepstool or ladder). Setting the table. Try providing items one at a time: first all the plates, then all the forks, then the knives, etc. Organizing books (by size, alphabetically, by color). Organizing a messy drawer. Clipping coupons (whether you actually use them or not). Bringing in the mail or newspapers. Sorting and rolling coins. Recreational activities Playing card games, especially old favorites or simple games like War. Consider large-print cards. Playing board games, such as checkers or Chinese checkers. Working word-search puzzles. Look for large-print versions of books. Flipping through scrapbooks or photo albums. Identifying people in old photos. (Write down what you learn!) Reading books and magazines; look for those heavy on images (coffee-table books and magazines on design, travel, photography). Working jigsaw puzzles. You may need to experiment to find some that challenge without frustrating. On the bright side, you'll be able to use a successful one repeatedly. Consider puzzles designed for people with dementia. Playing catch with a softball or beanbag. Spending time with animals. Visit a neighbor's dog or arrange to have a child bring one over every day. Visit a pet store. Provide a fish tank or goldfish bowl. Going out for ice cream cones. Not having to sit down, as you would at a restaurant, may be less stressful. Following an exercise video. Check YouTube.com for that favorite of '60s and '70s housewives, Jack LaLanne, an icon ahead of his time who may be familiar to the person you're caring for. Listening to old radio shows (check your local library or alzstore.com). Playing dance music and dancing. Watching a digital picture frame with rotating images of family members. Set it so pictures change slowly. * Ask open-ended questions about the pictures as you watch. Reading old comics. Look for books that are collections of classics from the person's era, like Peanuts, Family Circus, Little Nemo. Looking through a personal-memories box. Include such items as military pins, baby clothes, postcards, pictures of old houses, costume jewelry, and other tactile icons that have meaning to the person. Caring for a doll. In late-stage dementia, people often find comfort in "taking care of" a baby doll or simply cuddling and stroking a stuffed animal. Outdoor activities Limit activities to a confined area, or provide a watchful eye if the person is prone to wandering. Tending a garden: weeding, hoeing, watering, monitoring. (Indoor variations, such as an herb garden, orchids, or a terrarium, also provide sensory stimulation.) Raking leaves or sweeping a porch. Picking up sticks. Watering the lawn. Planting bulbs. Taking a walk (with a companion). Feeding birds, ducks, fish (or watching a bird feeder placed outside a window). Arts and spiritual activities to try with someone suffering from Alzheimer's or other dementias Handiwork Stacking kindling. Organizing a toolbox or workbench. Sanding wood. Washing or polishing a car. Tightening screws. Painting (such as a fence). Digging holes. Working a lockbox (a wooden box featuring a variety of locks). Arts activities Experimenting with different materials, such as watercolors, clay, pastels, washable markers. Drawing or coloring. Search amazon.com with the phrase coloring books -- there are many with patterns or adult-friendly themes. Creating a family history scrapbook. Using an electronic keyboard or child's zither. Singing along to holiday carols or songs from a favorite era. Listening to audio books. Listening to a music box at one's bedside. Stringing popcorn or cranberries (for holiday decorations) or cereal and popcorn (for birds). Creating collages. Use leaves, magazine images, tissue paper, buttons, but beware of small choking hazards for people with advanced dementia. Stamping to make gift tags, cards, or just for fun. Find supplies at any craft store. Spiritual Activities Singing hymns. Being read to from religious texts. Walking a labyrinth. Making crafts together for a charity, which can be more rewarding than making a craft for yourself. Someone who crochets might use a simple, repetitive pattern to make scarves or lap blankets.

Social

We have been busy and that is good.

Gregory has been spending his Tuesdays painting after a brief hiatis. He loves his time with Nancy Rosen www.nrosen.com and he continues to be as creative and prolific with his paining as ever.

Went to see "You Can't Take It With You," the movie, yesterday and on Friday look forward to seeing the play by the same name. The original Moss & Hart play premiered in the 1930's and it is one of our favorites. It is great living so close to Northwestern University and being able to benefit from the cultural experiences there.

Also at Northwestern, we attended an Opera Master Class with Nathan Gun, world renowned baritone. Five students from the graduate program at NWU each performed a piece and then Mr. Gun gave suggestions to guide their improvement.

We saw three operas in two weeks: Werther, Elektra, and Simone Boca Negra. All were at The Lyric Opera of Chicago where Gregory and I, volunteering during tech rehearsals, are entitled to see all of the season's dress rehearsals.

Going out to dinner tonight with neighborhood friends and again tomorrow to help a friend celebrate his 60th birthday.

Gregory has begun swimming again and is very pleased with himself. Ken and Ben, his companions join him at the pool and that has helped him to navigate getting from the condo downstairs to LA Fitness and back since he cannot do that on his own anymore.

For Thanksgiving we will be with Nancy Rosen's family. Her mom, Eileen, who lives in our building and is a good friend will be there as well.

Of course the day after Thanksgiving we will decorate for Christmas and begin baking. Busy hands are hands that do not wring themselves over Alzheimer's!

Improv for Alzheimer's

From NPR Morning Edition

Improv For Alzheimer's: 'A Sense Of Accomplishment'

by JULIANNE HILL

August 15, 2011

Many newly diagnosed Alzheimer's patients go through the stressful phase of realizing they are losing their memory while still having enough insight to know that, over time, they will no longer be able to care for themselves.

So a team of researchers from Chicago — a city known for improvisational theater — is testing a new idea of whether unscripted theater games can affect the well-being of these patients.

"Improv is all about being in the moment, which for someone with memory loss, that is a very safe place," says Mary O'Hara, a social worker at the Cognitive Neurology and Alzheimer's Disease Center at Northwestern University's Feinberg School of Medicine. "Maybe thinking about the past and trying to remember makes the person a little anxious or even a bit sad because their memory is failing. And maybe thinking about the future too much is also anxiety-provoking. So being in the moment is such a safe and a good place to be."

"There's no experience required, there's no script, there's no memorization," O'Hara says. "They bring to it just their creative potential. And they are so successful at this."The Northwestern researchers are working with the Tony Award-winning Lookingglass Theatre Company. There are already theater programs that use improv for Alzheimer's patients in the later stages of the disease, but this collaboration is unique because it's for early-stage patients.

Christine Mary Dunford, with Lookingglass, leads the group of novice performers in very simple improv games.

One "of the basic tenets of improv that [is] perfect for working with people with dementia [is] the concept of yes," Dunford says. "So, fundamental to all our work is that whatever answer someone comes up with, the rest of us are going to be able to work with it."

Researchers don't expect these games to stop or slow the progress of Alzheimer's disease, but they are investigating whether engaging the creative abilities of these early-stage patients improves their lives.

Before and after the eight-week program, participants and their families are asked a series of questions, checking to see how the course changes their answers.

"We're asking people to tell us how they're feeling about their physical health, their mood," says Darby Morhardt, a research associate professor at Northwestern. "How do they feel about their memory? How did they feel about their family, about their relationships? And also, how do they feel about their current situation as a whole and their life as a whole?"

"When we think of people with Alzheimer's and other dementia, we think about people who are losing skills on a daily basis," says improv coach Dunford. "But here, they're learning some new things, too.

It gives them a feeling of — a sense of self-confidence that they were able to accomplish this. And in this disease, there's not a lot of opportunity to feel a sense of accomplishment."

Without Warning

A great support program for those with and those caring for those with Alzheimer's Disease. The meetings are held in Elmhurst at at St. Peter's Church and is sponsored by the Rush Alzheimer's Disease Center, 600 S. Paulina, Suite 130, Chicago, IL 60612, 312-942-5359.

Click here to see a video about WITHOUT WARNING.

Gregory Paints

Gregory continues to get great pleasure from his new art form. It has been so important to him and I do everything I can to encourage his pride in the work he is doing. Nancy Rosen, his Artist Angel, continues to advise as they work together in her studio.

FIRE (SOLD)

8"X12"

Oil on Gessoed Stone Henge Paper

YELLOW & BLUE SPIRAL

25"X25"

Oil on Gessoed Stone Henge Paper

GREEN

8"X12"

Oil on Gessoed Stone Henge Paper

SUNSET

8"X12"

Oil on Gessoed Stone Henge Paper

STRIPES

8"X12"

Oil on Canvas

BLUR

8"X12"

Oil on Gessoed Canvas

ORANGE SUN

25"X25"

Oil on Gessoed Stone Henge Paper

DIAGONAL

8"X12"

Oil on Gessoed Stone Henge Paper

DIPTIC

18"X12"

Oil on Gessoed Stone Henge Paper

Oil on Gessoed Stone Henge Paper

SHADES OF GRAY

25"X25"

Oil on Gessoed Stone Henge Paper

RED SCRIBBLES

25"X25"

Oil on Gessoed Stone Henge Paper

BUDDHA

8"X12"

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From The New York Times

December 31, 2010

Giving Alzheimer’s Patients Their Way, Even Chocolate

By PAM BELLUCK

PHOENIX — Margaret Nance was, to put it mildly, a difficult case. Agitated, combative, often reluctant to eat, she would hit staff members and fellow residents at nursing homes, several of which kicked her out. But when Beatitudes nursing home agreed to an urgent plea to accept her, all that changed.

Disregarding typical nursing-home rules, Beatitudes allowed Ms. Nance, 96 and afflicted with Alzheimer’s, to sleep, be bathed and dine whenever she wanted, even at 2 a.m. She could eat anything, too, no matter how unhealthy, including unlimited chocolate.

And she was given a baby doll, a move that seemed so jarring that a supervisor initially objected until she saw how calm Ms. Nance became when she rocked, caressed and fed her “baby,” often agreeing to eat herself after the doll “ate” several spoonfuls.

Dementia patients at Beatitudes are allowed practically anything that brings comfort, even an alcoholic “nip at night,” said Tena Alonzo, director of research. “Whatever your vice is, we’re your folks,” she said.

Once, Ms. Alonzo said: “The state tried to cite us for having chocolate on the nursing chart. They were like, ‘It’s not a medication.’ Yes, it is. It’s better than Xanax.”

It is an unusual posture for a nursing home, but Beatitudes is actually following some of the latest science. Research suggests that creating positive emotional experiences for Alzheimer’s patients diminishes distress and behavior problems.

In fact, science is weighing in on many aspects of taking care of dementia patients, applying evidence-based research to what used to be considered subjective and ad hoc.

With virtually no effective medical treatment for Alzheimer’s yet, most dementia therapy is the caregiving performed by families and nursing homes. Some 11 million people care for Alzheimer’s-afflicted relatives at home. In nursing homes, two-thirds of residents have some dementia.

Caregiving is considered so crucial that several federal and state agencies, including the Department of Veterans Affairs, are adopting research-tested programs to support and train caregivers. This month, the Senate Special Committee on Aging held a forum about Alzheimer’s caregiving.

“There’s actually better evidence and more significant results in caregiver interventions than there is in anything to treat this disease so far,” said Lisa P. Gwyther, education director for the Bryan Alzheimer’s Disease Research Center at Duke University.

The National Institute on Aging and the Administration on Aging are now financing caregiving studies on “things that just kind of make the life of an Alzheimer’s patient and his or her caregiver less burdensome,” said Sidney M. Stahl, chief of the Individual Behavioral Processes branch of the Institute on Aging. “At least initially, these seem to be good nonpharmacological techniques.”

Techniques include using food, scheduling, art, music and exercise to generate positive emotions; engaging patients in activities that salvage fragments of their skills; and helping caregivers be more accepting and competent.

Changing the Mood

Some efforts involve stopping anti-anxiety or antipsychotic drugs, used to quell hallucinations or aggression, but potentially harmful to dementia patients, who can be especially sensitive to side effects. Instead, some experts recommend primarily giving drugs for pain or depression, addressing what might be making patients unhappy.

Others recommend making cosmetic changes to rooms and buildings to affect behavior or mood.

A study in The Journal of the American Medical Association found that brightening lights in dementia facilities decreased depression, cognitive deterioration and loss of functional abilities. Increased light bolsters circadian rhythms and helps patients see better so they can be more active, said Elizabeth C. Brawley, a dementia care design expert not involved in the study, adding, “If I could change one thing in these places it would be the lighting.”

Several German nursing homes have fake bus stops outside to keep patients from wandering; they wait for nonexistent buses until they forget where they wanted to go, or agree to come inside.

And Beatitudes installed a rectangle of black carpet in front of the dementia unit’s fourth-floor elevators because residents appear to interpret it as a cliff or hole, no longer darting into elevators and wandering away.

“They’ll walk right along the edge but don’t want to step in the black,” said Ms. Alonzo, who finds it less unsettling than methods some facilities use, bracelets that trigger alarms when residents exit. “People with dementia have visual-spatial problems. We’ve actually had some people so wary of it that when we have to get them on the elevator to take them somewhere, we put down a white towel or something to cover it up.”

When elevator doors open, Beatitudes staff members stand casually in front, distracting residents with “over-the-top” hellos, she said: “We look like Cheshire cats,” but “who’s going to want to get on the elevator when here’s this lovely smiling person greeting you? It gets through to the emotional brain.”

New research suggests emotion persists after cognition deteriorates. In a University of Iowa study, people with brain damage producing Alzheimer’s-likeamnesia viewed film clips evoking tears and sadness (“Sophie’s Choice,” “Steel Magnolias”), or laughter and happiness (Bill Cosby, “America’s Funniest Home Videos”).

Six minutes later, participants had trouble recalling the clips. But 30 minutes later, emotion evaluations showed they still felt sad or happy, often more than participants with normal memories. The more memory-impaired patients retained stronger emotions.

Justin Feinstein, the lead author, an advanced neuropsychology doctoral student, said the results, being studied with Alzheimer’s patients at Iowa and Harvard, suggest behavioral problems could stem from sadness or anxiety that patients cannot explain.

“Because you don’t have a memory, there’s this general free-floating state of distress and you can’t really figure out why,” Mr. Feinstein said. Similarly, happy emotions, even from socializing with patients, “could linger well beyond the memories that actually caused them.”

One program for dementia patients cared for by relatives at home creates specific activities related to something they once enjoyed: arranging flowers, filling photo albums, snapping beans.

“A gentleman who loved fishing could still set up a tackle box, so we gave him a plastic tackle box” to set up every day, said the program’s developer, Laura N. Gitlin, a sociologist at Thomas Jefferson University in Philadelphia and newly appointed director of the Center on Aging and Health at Johns Hopkins University.

After four months, patients seemed happier and more active, and showed fewer behavior problems, especially repetitive questioning and shadowing, following caregivers around. And that gave caregivers breaks, important because studies suggest that “what’s good for the caregiver is good for the patient,” Professor Gwyther said.

Aiding the Caregiver

In fact, reducing caregiver stress is considered significant enough in dementia care that federal and state health agencies are adopting programs giving caregivers education and emotional support.

One, led by Mary S. Mittelman, a New York University dementia expert, found that when people who cared for demented spouses were given six counseling sessions as well as counselors whom they could call in a crisis, it helped them handle caregiving better and delayed by 18 months placing patients in nursing homes.

“The patient did not have fewer symptoms,” Dr. Mittelman said. “It was the caregiver’s reaction that changed.”

The Veterans Affairs Department is adopting another program, Resources for Enhancing Alzheimer’s Caregiver Health, providing 12 counseling sessions and 5 telephone support group sessions. Studies showed that these measures reduced hospital visits and helped family caregivers manage dementia behaviors.

“Investing in caregiver services and support is very worthwhile,” saving money and letting patients remain home, said Deborah Amdur, chief consultant for care management and social work at the Veterans Affairs Department.

Beatitudes, which takes about 30 moderate to severe dementia sufferers, introduced its program 12 years ago, focusing on individualized care.

“In the old days,” Ms. Alonzo said, “we would find out more about somebody from their obituary than we did when they were alive.”

The dementia floor was named Vermillion Cliffs, after colorfully layered rock formations formed by centuries of erosion, implying that, “although weathered, although tested by dementia, people are beautiful” and “have certain strengths,” said Peggy Mullan, the president of Beatitudes.

The facility itself is institutional-looking, dowdy and “extremely outdated,” Ms. Mullan said.

“It’s ugly,” said Jan Dougherty, director of family and community services at Banner Alzheimer’s Institute in Phoenix. But “they’re probably doing some of the best work” and “virtually have no sundowning,” she said, referring to agitated, delusional behavior common with Alzheimer’s, especially during afternoon and evening.

Beatitudes eliminated anything potentially considered restraining, from deep-seated wheelchairs that hinder standing up to bedrails (some beds are lowered and protected by mats). It drastically reduced antipsychotics and medications considered primarily for “staff convenience,” focusing on relieving pain, Ms. Alonzo said.

It encouraged keeping residents out of diapers if possible, taking them to the toilet to preserve feelings of independence. Some staff members resisted, Ms. Alonzo said, but now “like it because it saves time” and difficult diaper changes.

Family members like Nancy Mendelsohn, whose mother, Rose Taran, was kicked out of facilities for screaming and calling 911, appreciate it. “The last place just put her in diapers, and she was not incontinent at all,” Ms. Mendelsohn said.

Ms. Alonzo declined to pay workers more to adopt the additional skills or night work, saying, “We want people to work here because it’s your bag.”

Finding Favorite Things

For behavior management, Beatitudes plumbs residents’ biographies, soothing one woman, Ruth Ann Clapper, by dabbing on White Shoulders perfume, which her biographical survey indicated she had worn before becoming ill. Food became available constantly, a canny move, Ms. Dougherty said, because people with dementia might be “too distracted” to eat during group mealtimes, and later “be acting out when what they actually need is food.”

Realizing that nutritious, low-salt, low-fat, doctor-recommended foods might actually discourage people from eating, Ms. Alonzo began carrying chocolate in her pocket. “For God’s sake,” Ms. Mullan said, “if you like bacon, you can have bacon here.”

Comforting food improves behavior and mood because it “sends messages they can still understand: ‘it feels good, therefore I must be in a place where I’m loved,’ ” Ms. Dougherty said.

Now, when Maribeth Gallagher, Beatitudes’ dementia program director, learns someone’s favorite foods, “I’m going to pop that on your tongue, and you’re going to go ‘yum,’ ” she said. “Isn’t that better than an injection?”

Beatitudes also changed activity programming. Instead of group events like bingo, in which few residents could actually participate, staff members, including housekeepers, conduct one-on-one activities: block-building, coloring, simply conversing. State regulators initially objected, saying, “Where’s your big group, and what you’re doing isn’t right and doesn’t follow regulations,” Ms. Alonzo said.

Ms. Mullan said, “I don’t think we ever got cited, but it was a huge fight to make sure we didn’t.”

These days, hundreds of Arizona physicians, medical students, and staff members at other nursing homes have received Beatitudes’ training, and several Illinois nursing homes are adopting it. The program, which received an award from an industry association, the American Association of Homes and Services for the Aging, also appears to save money.

Arlene Washington’s family moved her to Beatitudes recently, pulling her from another nursing home because of what they considered inattentive and “improper care,” said her husband, William. Mrs. Washington, 86, was heavily medicated, tube fed and unable to communicate, “like she had no life in her,” said Sharon Hibbert, a friend.

At Beatitudes, Dr. Gillian Hamilton, administrative medical director, said she found Mrs. Washington “very sedated,” took her off antipsychotics, then gradually stopped using the feeding tube. Now Mrs. Washington eats so well she no longer needs the insulin she was receiving. During a recent visit, she was alert, even singing a hymn.

That afternoon, Ms. Nance, in her wheelchair, happily held her baby doll, which she named Benjamin, and commented about raising her sons decades ago.

Ms. Alonzo had at first considered the doll an “undignified” and demeaning security blanket. But Ms. Gallagher explained that “for a lot of people who are parents, what gives them joy is caring for children.”

“I was able,” Ms. Gallagher said, “to find Margaret’s strength.”

Ms. Gallagher said she learned when approaching Ms. Nance to “look at her baby doll, and once I connect with the doll, I can look at her.”

She squatted down, complimented Benjamin’s shoes, and said, “You’re the best mom I know.”

Ms. Nance nodded earnestly.

“It’s good to know,” Ms. Nance said, “that somebody knows that you care.”