Homeward Bound

Monday, March 29, 2010
By Tom and Karen Brenner
Alzheimer's Reading Room

Even though there are many, many difficulties, having Alzheimer’s does not mean you are less than you were; having dementia does not mean you are dumb.....


We don’t have to put pebbles in our shoes, or wear over large rubber gloves or put Vaseline on our glasses to understand what it could feel like to be elderly; all we need to do is listen to elders with an open heart and an understanding mind.

We don’t have to have Alzheimer’s and dementia to understand what it must feel like to be confused, lonely, frustrated and forgetful. Every one has felt these emotions at one time or another. Of course, the difference is that people living with Alzheimer’s deal with confusion, loneliness, frustration and memory loss most of the time. Even though there are many, many difficulties, having Alzheimer’s does not mean you are less than you were; having dementia does not mean you are dumb.

Often times people with Alzheimer’s and dementia will say to family members or staff at a care facility that they need or want to go home. Sometimes, they can become quite angry and agitated and insistent that they must get home!

In our work with people living with Alzheimer’s we have found that this wish to go home is a way of expressing a deep desire for life to go back to the way it used to be. Of course, none of us can go home again, none of us can go back to the way our lives used to be.

We do not patronize or condescend or pretend when someone tells us that they want to go home. Instead, we tell them that we understand how they feel; we know how we feel about our home. We ask them to talk to us about something special about their home. We need to find out what part of the past is with them when they express this desire to go home.

We were recently visiting with Sadie in a locked dementia care center. Sadie was very concerned that her car had recently been stolen. Now that she no longer had her car, she could not go home, and this troubled her. We knew that Sadie had not owned a car in many years, but we understood what having a car meant to her; it meant independence, it meant a way home.

We told Sadie that we were sorry she did not have her car. We told her about someone we knew who had their car stolen and that it was a terrible feeling. Sadie needed to know that some one heard her. It was good to remind her that she was not alone.

Molly often wandered around the care center where she was living in search of her little boy. She would tell anyone who would listen that her son was only four years old and she could not find him. She needed to go home and check on him. Molly was truly upset and near panic about her little boy. Molly’s little boy was now a middle aged fireman, but telling her this would not have been helpful.

Instead, we told Molly that we knew she was a wonderful mother and that she must have made arrangements for her son. She would never have left her little boy alone! Reminding Molly that she had loved and cared for her son helped calm her fears. As she began to talk to us about her little boy, she grew calmer, even laughing with us as she remembered some funny things about her son.

When we work with people who have Alzheimer’s we recognize that there may be confusion about time and place, but the emotions, the feelings are real. Wanting to go home again, to go back to a place in time when life was not so difficult is a perfectly understandable human emotion.

Art Therapy for Alzheimer's Patients

Sunday, March 28, 2010


"It's a mission I believe in," said the former elementary school art teacher, an advocate of the arts-and-health-care movement. "I think it is essential. It is needed. They come alive".....
Alzheimer's Reading Room



"If they weren't in here doing art therapy, you'd think they were completely gone," said Ben Wells, Golden Livingcenter's executive director. "Most don't recognize family members, or even (remember) how to eat. There's something about the art therapy that brings out something deep inside."

Former elementary art teacher now works with Alzheimer's patients

By JOHN CARLSON
jcarlson@muncie.gannett.com

It started with real paint brushes and make-believe paint, applied to the big-band sounds of Tommy Dorsey.

"This lady loves to paint!" Laurie Lunsford had announced over the music, greeting the advanced Alzheimer's patients as they were rolled or escorted into the activity room at the Golden Livingcenter. Now with dry brushes in hand, they stroked and dabbed on a print of a painting by Michael Coleman called In the Adirondacks, practicing for the fun to come.

"We're warming up," Lunsford explained, shortly before passing out jars of blue, red, green and yellow watercolor. "It's getting them revved up to do the real painting."

Soon enough, the residents -- all 80-somethings, and including Marie Morris, Zora Begley, Dorothy Bannister and Maxine Siewert -- were applying real colors to a large sheet of plain white poster board. One corner resembled a patch of ocean-blue sky. Elsewhere, undulating lines looked like the charting of a bear or bull stock market, depending from which direction you looked.

But either way, the women were moving and, at least to some extent, interacting.

That was a minor miracle.

"If they weren't in here doing art therapy, you'd think they were completely gone," said Ben Wells, Golden Livingcenter's executive director. "Most don't recognize family members, or even (remember) how to eat. There's something about the art therapy that brings out something deep inside."

That, to be sure, is why Lunsford voluntarily does this each week at four local nursing homes.

"It's a mission I believe in," said the former elementary school art teacher, an advocate of the arts-and-health-care movement. "I think it is essential. It is needed. They come alive."

As her painting class continued, Lunsford worked to engage the women in several other artistic efforts.

"We ought to make up a story about this," she said, motioning toward the print of the Coleman painting, which featured two black bears in a tree. "Tell me a bear story."

And while you couldn't say the talk that resulted was a story, the women attempted to verbalize something, with Maxine even expressing what sounded like some long-recessed thought about a bear and Wyoming.

"How old were you?" Lunsford asked.

"Well, I was married," the elderly woman responded, plainly.

Putting it into words

From there, the group tried recitation. "The bear went over the mountain" and "Peter Piper picked a peck of pickled peppers" were attempted before Lunsford moved on to simple poems like "Roses are red, violets are blue ..." all the while encouraging the women to add new stanzas.

From somewhere, the word "beans" popped up.

"OK, give me a sentence with beans at the end," Lunsford urged.

"I do not like beans too well," Maxine responded, as the others also attempted to join in.

The women also smiled, and even laughed, and when one who can't dress herself requested a bib to protect her sweater from paint stains, it raised onlookers' eyebrows.

If, by comparison, most of their responses lacked what we would consider rational mental input, Lunsford cautioned that in this room, success had another measure.

"It's not the finished product," she said, "it's the process. You go with the flow a lot."

For Lunsford, this work began three years ago with something called Dancing Hands, simple handheld wooden devices that she developed as rhythmic instruments that can engage the users in musical exercises, at the same time stimulating interaction. The result of an entrepreneur class she took at Ball State University, they are made by Hillcroft employees and include accompanying compact disks produced by two popular local musicians -- Paul McDaniel and Rick Dwenger.

Now, the money she makes from those devices supports her weekly volunteer work with Alzheimer's patients at Golden Livingcenter, as well as Morrison Woods, Elmcroft and Willowbend.

She intentionally targeted this market for her arts-related health work.

"I wanted to learn more how Alzheimer's would respond to it," she said. "Research shows if you stimulate the creative part of the brain, it gets the rest of your brain moving."

Observable results

Todd Starkey, director of Golden Livingcenter's Alzheimer's care, has observed this in action.

"What I have seen," he said, "is their attention span is much greater than before. They'll sit down for an hour at a time. ... I see a better mood. Their social interaction is better. It relieves a lot of frustration for them."

Something even more surprising?

"Our falls have greatly reduced," Starkey said. "We had half the amount of falls in one month in that advanced Alzheimer's group, so it's very exciting stuff."

Results of such arts activities in the mid-stage Alzheimer's group, he added, are even more pronounced.

"Creativity there is very much alive," Starkey said.

That's why he's grateful to Lunsford for her work.

"I feel like she's very passionate about what she does," he explained. "She's a blessing to have here on the unit."

As for her, Lunsford said the spirit-lifting properties of the arts have been important in her own life. Meld that fact with her passion for helping the elderly, and the natural result is programs like those she is leading. As for the future, her plans include possibly expanding that mission to a business that brings the arts to the homebound.

Still, the volunteer work she does right now is its own particular joy.

"It brings new life to every part of a person," Lunsford said, while the women surrounding her moved their brushes across the paper.

She includes herself in that joyful reaction, by the way.

"I brighten my own day," she said of her sessions. "There's enough sad stuff in this world. To bring happiness to someone is very fulfilling."

Source: http://www.thestarpress.com/article/20100328/LIFESTYLE/3280305

Contact John Carlson at 213-5824.
Additional Facts
Laurie Lunsford
WEB SITE: www.dancinghandstaps.com

E-MAIL: laurielunch@gmail.com

QUOTE: "The elderly. That's where my heart is."

Alzheimer's Association on Healthcare Reform Legislation

Tuesday, March 23, 2010

"Many aspects of the final healthcare reform legislation will greatly serve the Alzheimer community," said Robert Egge, vice president of the Alzheimer’s Association’s Public Policy and Advocacy Division. "We are particularly pleased with those elements that improve the healthcare delivery system through the promotion of care coordination, transitional care and long-term care services."

Needs of Alzheimer population addressed in healthcare reform legislation

As the leading care, research and advocacy organization for Alzheimer’s disease, the Alzheimer’s Association applauds Congress for including significant provisions in the final healthcare reform legislation to address the health concerns of a growing Alzheimer population. While the Association did not endorse any specific healthcare reform legislation, the Association did work to ensure that all bills under consideration contained the strongest provisions possible to address the particular challenges and concerns of the more than 5 million Americans with Alzheimer’s. Several provisions in the final measure would deliver substantial benefits to those with Alzheimer’s and other dementias and to their caregivers.

"Many aspects of the final healthcare reform legislation will greatly serve the Alzheimer community," said Robert Egge, vice president of the Alzheimer’s Association’s Public Policy and Advocacy Division. "We are particularly pleased with those elements that improve the healthcare delivery system through the promotion of care coordination, transitional care and long-term care services."

Most of the Alzheimer population has one or more other serious medical condition. Coordinated care is critical because so many with Alzheimer’s are also managing multiple chronic conditions, like coronary heart disease or diabetes. Cognitive impairment greatly complicates the management of these other conditions, resulting in more hospitalizations, longer hospital stays, and higher costs than for those with these same conditions but not Alzheimer’s disease. In fact, Medicare costs are three times higher than for those without Alzheimer's disease, while Medicaid costs are nine times higher.

Elements in the final healthcare reform legislation would begin to address these issues:
• Alzheimer families will be helped by the creation of a national voluntary insurance program, known as the CLASS Act, which provides benefits for long-term care services and support, such as respite care, home care aides and accessible transportation. This new insurance program will help individuals with Alzheimer’s disease to remain as independent as possible within their homes and communities for as long as they can and is a great first step in addressing long-term care issues and in assisting families.
• Creating a new demonstration project, known as the Innovation Center, to examine ways to promote care coordination in the Medicare program, including for individuals with Alzheimer’s and other dementias. "Care coordination is a process for ensuring effective communication among medical and community care providers and connecting an individual and their family with the services they need," Egge said. "The new Innovation Center will pilot new programs and identify which programs work best for individuals with dementia."
• Establishing a Medicare pilot program to provide transitional care to seniors at a high risk, including those with cognitive impairment, of re-entering a hospital. "Cognitive impairment due to Alzheimer’s and other causes increases the complexity of care transitions and post-acute care, resulting in increased risk for medication errors and hospital readmissions," said Egge. "Alzheimer families need assistance with planning and managing discharge and post-acute care, including arranging and monitoring in-home medical treatment and supportive services/"
The Association commends the fact that the legislation takes steps to address individuals with younger-onset Alzheimer’s disease — those under the age of 65 — who have a difficult time getting and keeping private health insurance. Currently, almost 29 percent of individuals with younger-onset Alzheimer’s disease have no health insurance, causing a great financial burden on their families. The healthcare reform legislation would make health insurance available to those with pre-existing conditions, and there would also be guaranteed issue and renewability.

"We are glad to see provisions ensuring that individuals with younger-onset Alzheimer’s can more easily obtain, maintain and retain health insurance," said Egge.

The Association is pleased with how these various provisions included in the final healthcare reform measure would benefit the growing number of Alzheimer families. But ultimately solving the Alzheimer crisis — with its far reaching impact on families, business, Medicare, Medicaid and the nation as a whole — will require investment in research to develop effective treatments that prevent, stop or cure the disease. While healthcare reform was never designed to address this challenge, it does include an important step called the Cures Acceleration Network. This $500 million research program is aimed at developing treatments and cures for high need diseases, such as Alzheimer’s, with an emphasis on bridging the gap between laboratory discoveries and actual treatments.

Alzheimer’s Association
The Alzheimer's Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer’s. For more information, visit www.alz.org.

Contact: Alzheimer's Association
Media line: 312.335.4078
E-mail: media@alz.org

Stressful but Vital: Picking a Nursing Home

March 18, 2010

By WALECIA KONRAD
The decision is one of the hardest you will ever make. Your spouse, parent or another loved one needs care that assisted living or home health care simply cannot provide. You need to choose a nursing home.

It’s a difficult and emotional task. The horror stories are well documented, and even in the best nursing homes the transition can be wrenching for the entire family.
Finding a good nursing home takes research and perseverance. You want a safe, engaging and pleasant environment with caring staff and solid medical practices.

“You can actually get all of that in a nursing home — if you know what to look for and how to search,” said Larry Minnix, chief executive of the American Association of Homes and Services for the Aging, a trade group for nonprofit nursing homes and other organizations for the elderly.

Unfortunately, the typical search for a nursing home is made under duress. More than 60 percent of admissions come from hospitals. The patient may have broken a hip or had a stroke and now needs rehabilitative care. The hospital is in a hurry to discharge and may move quickly to get the patient moved to an available nursing home bed, regardless of the operator’s quality or reputation.

“Hospitals ought to be more aware, but it often is just not on their radar screen whether they are sending a patient to a good nursing home or a bad one,” said Janet Wells, director of public policy at the National Consumer Voice for Quality Long-Term Care, an advocacy group.

In such situations, you have precious little time to do your research. What is more, these temporary stays often become permanent, depending on the individual case and sometimes on the quality of the temporary care received.

Paying for a nursing home is another huge source of stress. Medicare pays only for medically necessary care in a skilled nursing home, like physical therapy or intravenous medicine. It does not pay for what is called custodial care — help with walking, eating, bathing and other daily tasks. Instead, the majority of nursing home residents pay from personal money, long-term care insurance policies or, if they qualify, through Medicaid.

The average cost of nursing home care is $200 a day, and that does not include additional fees for specialized services like care for patients with Alzheimer’s or dementia.

To find a nursing home you can really feel good about, consider these important steps.

START WITH THE DATA Every year the Centers for Medicare and Medicaid Services collect data on more than 15,000 nursing homes throughout the country. Health inspection data, staffing and quality measures are combined to come up with an overall ranking of one to five stars. To look up nursing homes in your area, go to medicare.gov and click on the “nursing home compare” tool.

In addition to the rankings, the site offers a useful brochure entitled Medicare’s Guide to Choosing a Nursing Home, as well as other resources.

Keep in mind that government rankings have their limits, and they reflect the nursing home’s performance during only a short period.

“Health inspection data is only as good as the data itself,” Ms. Wells said. She points out that many studies show that state inspections tend to underreport nursing home deficiencies and the seriousness of those deficiencies. “The home could be even worse than it appears in the rankings,” she said. “Of course, it could also be better.”

There are other shortcomings. For example, under the grading curve Medicare uses, precisely 10 percent of nursing homes in any one state are permitted to get five stars.

That could mean a four-star-rated facility may be just as good as a top-rated home down the street but simply falls below the percentage cutoff, said David LaLumia, president of the Health Care Association of Michigan, which represents nursing homes and rehabilitation centers in the state. On the other hand, it could also mean that more homes would fall into lower rankings if the curve did not exist.

VISIT, THEN VISIT AGAIN Nothing substitutes for what you see, hear and smell when you visit a nursing home, Mr. Minnix said. Be sure to visit more than once and at different times of the day and different days of the week. Take the checklist from the Nursing Home Compare Web site with you.

“Trust your five senses,” advised Mr. Minnix. “Does it smell like cleaning fluid and urine when you walk in or fried chicken and apple pie? You also want to see an ant farm of activity. Are the staff friendly and interacting with the residents?”

Be sure to ask to speak with crucial leaders, including the executive director, lead physician and head nurse. If those people are not available, ask when you can meet with them. If you get the runaround, Mr. Minnix said, that could be a red flag.

When you do meet with the staff, ask them if you may attend a resident council or family council meeting. These groups are usually run by family members to address concerns and improve the quality of care. You will get a good inside view of what is really going on at the nursing home from these meetings.

After your visits, always ask your loved one’s doctor, clergy, friends and family what they know about the homes on your short list.

WHAT TO ASK There are two big buzzword trends in nursing home management that can significantly increase the quality of care.

Ask the nursing homes you visit if they engage in “person-centered care,” as well as “consistent assignment,” suggests Carol Benner. She is the National Director of the Advancing Excellence Campaign, a coalition of industry, government and consumer groups working to improve nursing home quality.

Nursing homes that provide person-centered care allow residents to wake up when they want to, eat when they want to and generally set their own schedules. Traditionally, many nursing homes have had residents wake, eat, bathe and go to bed at the same times.

Consistent assignment, meanwhile, simply means that the same staff members — doctors, nurses, aides — treat the same patients each shift. The continuity of care reduces errors or problems and helps residents and staff members to develop a lasting relationship that can significantly improve a resident’s emotional well-being.

“Imagine how much nicer it would be to know the same person will bring your tea each evening and already knows you like sugar in it,” Ms. Benner said. “We know from the evidence out there that a strong relationship between residents and staff consistently leads to better care.”

It can also lead to lower staff turnover, because employees are naturally more engaged in their jobs and less willing to leave if they have developed relationships with their patients.

Be sure to ask each nursing home you visit what percentage of their staff leaves each year. Less than 30 percent annually is considered good. More than 50 percent is a sign to look elsewhere.

A nursing home is not obliged to disclose this information to you, but if it does not, “that tells you something, too,” Mr. Minnix said.

CALL YOUR OMBUDSMAN Each state has a federally funded long-term care ombudsman who is an advocate for nursing home patients.

This person can tell you if there are state rankings or surveys available in addition to the Medicare ratings. The ombudsman can also help you find the latest health inspection reports, which are public information, on specific nursing homes.

Ombudsmen can also tell you how many complaints the office has collected about a specific nursing home and the nature of those complaints.

You can find the ombudsman in your state online at the National Long-Term Care Ombudsman Resource Center.

Maybe most important, a good ombudsman will know about recent significant changes at various nursing homes.

When Ms. Wells recently helped a family member find a nursing home, for example, she was considering a three-star center close to home. But when she called the ombudsman’s office she discovered that the well-regarded director of that center had moved to a nearby one-star home. Ultimately, Ms. Wells decided to go with the lower-ranked facility because of the change in management.

Judy Berry on Challenging Dementia Behavior

Judy Berry is the founder and CEO of Lakeview Ranch.Lakeview Ranch provides a unique model of specialized dementia care for those with aggressive behavior. The model focuses on prevention, rather than treatment to manage behavior. Judy is also the Executive Director and founder of theDementia Care Foundation.

The ONLY Way to Deal with Challenging Behavior in Persons with Dementia IS "To PREVENT IT in the First Place".....

I have been working with this very vulnerable population(those with dementia AND challenging/aggressive behavior) for the last 12 years and after developing a model of specialized dementia care that has been successful in preventing the aggessive behavior in those that have had repeated discharges from other facilities and hospitalizations for behavior I have learned a few critical things I would like to share.

First I would like to add that I believe "NO One", the resident with the behavior, other residents, or staff should have to be subjected to violent behavior. We have learned that 90% of behavior can be controlled and/or eliminated by "pro-actively" Recognizing and Meeting the underlying need of the person displaying the behavior whether it be physical OR emotional.

There is a critical need for appropriate ratios of highly trained staff (and you are right when you say not everyone should work with people with dementia related behavior), but another huge piece often neglected in understaffed places is the ONGOING mentoring and support necessary to keep even the best trained staff on track and focusing on the emotional needs of the individual resident, and controlling their own non-verbal communication and reactions to that persons needs.

We have learned that both professional and informal caregiver "perception" of what is actually going on in the minds of a person with advancing dementia has a Direct Correlation to how they treat the individual.

For instance if they believe some of the readily available information that the "person" is no longer in there, or the "person" they knew is slowly disappearing before their eyes because of the effects on the brain, they are giving themselves permission to treat that person differently.

Talking about them in front of them like they are not there, not paying attention to their personal dignity emotions and feelings, ignoring their behaviors; like calling out, crying, or just withdrawing etc, and not giving them choices are just a few of the things that frequently will happen if the caregiver has a misguided perception.

All these behaviors on the part of the caregivers will produce challenging behavior, but often well meaning caregivers are not even aware they are doing them.

I can truly empathize with Joleen and others when they talk about their pain and frustration when told "No place wants to take their loved one!" and the intense fear of what will become of them. I lived with that pain and uncertainty for 7 years with my own mom, just to see her succumb to the system that uses overmedication to make our loved ones compliant in their environment!

There are some medications that can be appropriate at times, in limited amounts to avert some of the anxiety our loved ones are experiencing with their disease. The problem has always been and still is, in my opinion, that we need to be asking ourselves and the prescribing physicians WHY are we using them, to reduce anxiety in the resident OR to make life bearable for an understaffed facility that offers little in the way of training and "ONGOING staff support"

In the words of Jan Garard RN, Quality Improvement Coordinator and Trainer for MN Dept of Human Services, The ONLY Way to Deal with Challenging Behavior in Persons with Dementia IS "To PREVENT IT in the First Place By Bob DeMarco
Alzheimer's Reading Room

Driving with Alzheimer's Can Mean Death

Saturday, March 13, 2010

When someone is diagnosed with dementia or Alzheimer's should their license be revoked?

If someone is suffering from Alzheimer's and driving, are they a risk to the general public (other drivers)?

If someone suffering from Alzheimer's causes a fatality while driving should they be exempt from civil lawsuits? Or should they be treated the same way as someone driving under the influence of alcohol?

Should the doctor or family of a person diagnosed with Alzheimer's disease be held legally liable if the person causes a fatality while driving?

By Bob DeMarco
Alzheimer's Reading Room

A new study conducted by Linda Hunt at the School of Occupational Therapy at Pacific University, Oregon indicates that driving when suffering from Alzheimer's can be dangerous.

Of 207 drivers with Alzheimer's who went missing while driving, 32 died and 35 were found injured, the research showed. Another 70 were not found at the time the data was analyzed.

The first thing I thought to myself was, yikes.

The math, 207 cases, 32 died. 15.4 percent. Almost 6.5 out of 100. Six and one half persons. Is it possible that 15 percent of the persons suffering from Alzheimer's disease who go missing while driving end up dead?

The math, 207 cases, 32 died, 35 injured. 32 percent. Not good.

Hunt based her study on those incidents she found reported in the media. So the study does not test the percentage of all persons suffering from Alzheimer's that drive. Only those that were driving and were reported missing.

I decided to too look at some driving statistics. For 2007, there were 20.06 driving fatalities for every 100,000 licensed drivers. .02 percent. .0002.

Here is what Hunt said about the study,

"Alzheimer's disease affects memory and navigational skills. These impairments may lead to getting lost, which is a life-threatening problem," Hunt said. "Family members and friends of individuals with dementia need to recognize these impairments as serious threats to safety for anyone who has dementia."

Here is what Elizabeth Gould, director of quality care programs at the Alzheimer's Association's national office in Chicago, said,

"Our position is that a diagnosis alone is not sufficient to have someone's driving privileges taken away because many people in the early stages can still drive safely," said Gould. "It (driving) needs to be monitored."
From the FAU Driving Study,

"Roughly 60 to 65 percent of the individuals who come in for driving evaluations pass our driving assessment," Owens said. "By the time they come to us, they usually have some form of dementia. Within two years of a diagnosis of Alzheimer's disease, individuals are generally unable to drive."

Only six states -- Oregon, California, Nevada, Delaware, Pennsylvania and New Jersey -- have mandatory reporting laws when a doctor finds a patient is mentally impaired.

So I found myself thinking. It's likely that most of those people driving under the influence of Alzheimer's and then killed in a car while missing were probably doing OK until they finally got lost. How would one go about monitoring someone suffering from Alzheimer's? I mean if we knew what to look for it wouldn't be so hard to stop wandering of all types.

So here are the questions for readers.

When someone is diagnosed with dementia or Alzheimer's should their license be revoked?

If someone is suffering from Alzheimer's and driving, are they a risk to the general public (other drivers)?

If someone suffering from Alzheimer's causes a fatality while driving should they be exempt from civil lawsuits? Or should they be treated the same way as someone driving under the influence of alcohol?

Should the doctor or family of a person diagnosed with Alzheimer's disease be held legally liable if the person causes a fatality while driving?

Are you related to someone that has been diagnosed with Alzheimer's and is still driving?

Haunted

How blessed I really am......
By Kerry Runyeon
Alzheimer's Reading Room


In the midst of a conversation regarding a netbook with a salesman at Radio Shack I overheard a man raising his voice to another salesman at the register. "This is ridiculous. I have never had this happen before."

The salesman was telling him he was trying to use a debit card as opposed to a credit card. Glancing over I could see an elderly gentleman with his nicely dressed wife standing right next to him holding on to his arm. As he pulled out another card he must have flipped it at the salesman because I then heard him say, "Oh I am sorry. I didn't mean to do that. I am just really frustrated. I had my wife at the doctors today. She has Alzheimer's."

In the meantime my salesman is explaining details to me about the netbook, but I can hardly listen as my heart immediately starts to ache for this man.

Sensing his frustration, I felt a need to go over to him and say, "I understand. I know what you are going through." I wanted to look into his eyes so he could see into mine and share a mutual understanding. I came so close to doing so but the timing just was off and I wasn't sure my actions would be appreciated although I was willing to chance it.

By the time my salesman finished talking the couple was already heading out the door. I remember feeling tempted to run after them. Haunted was how I felt watching the husband leave with his wife shuffling along by his side.

All day I kept thinking about this man.....lost dreams, lost companionship, lost conversation. How lonely and isolating it must be to be the only one to shoulder the burden of dealing with this disease.

I would venture to guess most caregivers are in this situation being the ONE (as Bob DeMarco says) and the only ONE. Me....even though I am the primary ONE.....there are 3 other family members helping each in their own way with Lily.

How blessed I really am.

Voluntary End-of-Life Measures Banned at Catholic Hospitals

New York Times
By PAULA SPAN
March 8, 2010, 12:18 PM


Sean Gallup/Getty Images

In the book I discussed last week, Zoe FitzGerald Carter’s “Imperfect Endings,” a woman growing increasingly incapacitated from Parkinson’s disease deliberately stops eating and drinking so she can die in her home with her children and grandchildren nearby. It’s a controversial decision, both within her own family and in the society at large, but it’s a legal one — and a personal one that doesn’t require any bureaucracy’s blessing.

Where the picture grows murkier is in institutions like hospitals and nursing homes, which have their own formal policies and informal routines about treatment at the end of life and how much weight a patient’s expressed desires carry. We’ve all heard bitter tales of advance directives sometimes being ignored and overridden, of family members having to fight to have their loved ones’ final wishes honored.

In the 600 Catholic hospitals and hundreds of Catholic nursing homes around the country, such issues may grow more contentious in the wake of a new directive adopted by the United States Conference of Catholic Bishops.

As Harris Meyer recently reported in Kaiser Health News, the directive establishes “an obligation to provide patients with food and water, including medically assisted nutrition and hydration” for those who can’t eat or drink, and it specifically includes patients in “chronic and presumably irreversible conditions.”

Patients whose advance directives prohibit feeding tubes if they have terminal illnesses or have entered a persistent vegetative state (as mine does) would either have to accept such treatment or transfer to another facility.

Millions of patients could be affected by this change (it applies to all patients in Catholic facilities, including non-Catholics), though there’s some debate, as Mr. Meyer shows, over how individual hospitals and homes will interpret it.

It’s a good thing to know about, nonetheless, if you rush a failing, elderly relative (or a young one) to a Catholic hospital. The law protects him from being subjected to treatments he has specifically declined, but you might have to take him elsewhere if his wishes conflict with the bishops’ ruling.

New tool lets patients call the shots at end of their lives

By JOSEPHINE MARCOTTY, Minneapolis Star Tribune
March 10, 2010


Doug State entered hospice care two years ago knowing exactly how he wanted to die: at home in Cambridge, Minn., with his wife, Carol, and his dog, Teddy.

He got his wish a year ago at age 83, when his failing heart finally stopped just as he was sitting down to breakfast at his kitchen table. What Carol State remembers most clearly about that moment is that she was able to hold her husband and tell him she loved him as he left her life forever.

It almost didn't happen that way. But State was one of the first people in Minnesota to obtain a new kind of medical document that told his family and doctors exactly what kind of care he wanted at the end of his life.

Now, that same directive is slowly being adopted at hospitals, nursing homes and hospices across the state as part of a quiet groundswell within the medical community to give terminally ill patients more control over how and where they die.

The document has an awkward name -- Provider Orders for Life Sustaining Treatment, or POLST -- but it seems to work. Where it is standard practice, most notably Oregon and La Crosse, Wis., far fewer people die in intensive care units hooked up to machines they didn't want.

More importantly, experts say, the document and the careful decisionmaking that precedes it lift a terrible emotional burden from patients' families.
"If he had been in a hospital, we would have had to make the decision to pull everything," said Carol State, 71. "He saved us from having to make it."

Breaking the silence

Such end-of-life medical planning is assuming more importance in the debate over a health care overhaul, and has even turned into a red-hot political ignition point. Proponents argue that billions of dollars are wasted in aggressive, expensive medical treatments for people in their last weeks of life. Opponents have derided such end-of-life planning services as "death panels."

Supporters in Minnesota say it's actually about breaking the silence around death and giving patients what they want at the end of their life -- whether it's comfort care or as much intervention as possible.

"The reality is that patients are not allowed to make informed decisions about their medical care," said Dr. Donald Grossbach, director of hospice care for Allina. "They [should] have the right do that."

In recent years, Americans have tried an array of tools to direct care at the end of life -- living wills, advanced care directives and do-not-resuscitate (DNR) orders. Most of the time, experts say, they don't work. For example, polls show 90 percent of people say they want to die at home, but only 20 percent do.

"We were hopeful twenty years ago," said Mary Faith Marshall, a professor of bioethics at the University of Minnesota. "But fewer than 10 percent of people actually use an advanced directive."

Advanced directives and living wills are long, complex legal documents, experts say. Often they grow outdated or lie buried in a drawer at home, little use to frantic relatives or doctors, nurses and paramedics who have to make instantaneous decisions in an emergency.

To replace them, Minnesota's largest health care organizations have a statewide plan to do more advanced care planning and to make POLSTs the standard of care for patients in hospice or long-term care.

The documents will be placed with other medical records -- a uniform bright yellow, so relatives or paramedics can find them.

This year Allina Health System plans to use specially trained staff to talk to at least 4,000 patients about end-of-life planning, including POLSTs for 1,500 patients in hospice and long-term care.

An emergency

Doug State, for one, was clear about his wishes and had a DNR order. But a few months later, when Carol was away from home and her daughter was caring for him, he suddenly got dizzy. Her daughter got scared. "She couldn't reach me," said Carol State. "She did not know what to do."

Paramedics rushed Doug to the hospital in Cambridge. When Carol arrived, doctors and nurses were working frantically to keep him alive. She told them he was in hospice care, and her other daughter said, "This is not what he wanted."

But in a hospital or clinic, the drive to save a life often overrides everything, and State was airlifted to a Minneapolis hospital. He ended up exactly where he didn't want to be: far from home, in intensive care.

To Carol's joy, Doug survived, and a week later he became one of the first patients in Allina's pilot project. Carol and Doug State sat down with a nurse from Allina's hospice program and talked through his goals and wishes. He checked a box saying he chose not to be resuscitated. He checked one saying he wanted to go to a hospital only to help alleviate uncomfortable symptoms. He wanted no tube-feeding or fluids if he was unable to feed himself.

He and his doctor signed the document, and it became a part of his electronic medical record. A copy was posted on the couple's refrigerator door.

To experts like Grossbach, the document itself is less important than the conversations that precede it. Sure enough, when Doug died three months later, he didn't need the POLST because Carol knew not to call the ambulance. "It was what he wanted," she said.

Converting the skeptics

Some health care experts remain skeptical that POLSTs solve the underlying problem.
"We basically have an ongoing non-discussion on the topic of end-of-life planning" in this country, said Dr. Steven Miles, a bioethicist at the University of Minnesota. "Until families talk about it, it doesn't make any difference how you rearrange the bureaucracy."

Doctors don't generally talk about it either. Beth Virnig, a professor of health policy at the U, surveyed 4,074 doctors about advanced care planning with terminally ill patients. Her study, published in the journal Cancer, found that half would wait until all curative treatments had failed before discussing end-of-life care. "There is this idea in medicine that if you can't cure them your job is over," she said.
Nonetheless, over the last two decades POLSTs have made a difference in La Crosse.

Dr. Bud Hammes, who has led the program there for two decades, said the key was giving the responsibility to trained nurses and facilitators, not doctors, and making it a regular part of part of health care.

Today, he said, at death 96 percent of the patients at La Crosse's Gundersen Lutheran hospital have an advanced care directive, a POLST or both. Only 30 percent die in the hospital, compared with 50 percent nationally.

Experts say it could take a long time before POLSTs become routine in Minnesota. But they already have at least one convert.

Doug State lived his last days at home with his wife and the pets he loved, and died at his kitchen table without tubes and machines, just as he planned. "I want to die just like he did," said Carol State. "Wouldn't that be what we all want?"

Josephine Marcotty • 612-673-7394

© 2010 Star Tribune. All rights reserved.

Infection Defense May Spur Alzheimer’s

By GINA KOLATA
New York Times

For years, a prevailing theory has been that one of the chief villains in Alzheimer’s disease has no real function other than as a waste product that the brain never properly disposed of.

COMMON VILLAIN Bacteria being attacked by beta amyloid, in this image enlarged 18,500 times.

Related

The material, a protein called beta amyloid, or A-beta, piles up into tough plaques that destroy signals between nerves. When that happens, people lose their memory, their personality changes and they stop recognizing friends and family.

But now researchers at Harvardsuggest that the protein has a real and unexpected function — it may be part of the brain’s normal defenses against invading bacteria and other microbes.

Other Alzheimer’s researchers say the findings, reported in the current issue of the journal PLoS One, are intriguing, though it is not clear whether they will lead to new ways of preventing or treating the disease.

The new hypothesis got its start late one Friday evening in the summer of 2007 in a laboratory at Harvard Medical School. The lead researcher, Rudolph E. Tanzi, a neurology professor who is also director of the genetics and aging unit at Massachusetts General Hospital, said he had been looking at a list of genes that seemed to be associated with Alzheimer’s disease.

To his surprise, many looked just like genes associated with the so-called innate immune system, a set of proteins the body uses to fight infections. The system is particularly important in the brain, because antibodies cannot get through the blood-brain barrier, the membrane that protects the brain. When the brain is infected, it relies on the innate immune system to protect it.

That evening, after the lab’s usual end-of-the-week beer hour, Dr. Tanzi wandered into the office of a junior faculty member, Robert D. Moir, and mentioned what he had seen. As Dr. Tanzi recalled, Dr. Moir turned to him and said, “Yeah, well, look at this.”

He handed Dr. Tanzi a spreadsheet. It was a comparison of A-beta and a well-known protein of the innate immune system, LL-37. The likenesses were uncanny.
Among other things, the two proteins had similar structures. And like A-beta, LL-37 tends to clump into hard little balls.

In rodents, the protein that corresponds to LL-37 protects against brain infections. People who make low levels of LL-37 are at increased risk of serious infections and have higher levels of atherosclerotic plaques, arterial growths that impede blood flow.

The scientists could hardly wait to see if A-beta, like LL-37, killed microbes. They mixed A-beta with microbes that LL-37 is known to kill — listeria, staphylococcus, pseudomonas. It killed 8 out of 12.

“We did the assays exactly as they have been done for years,” Dr. Tanzi said. “And A-beta was as potent or, in some cases, more potent than LL-37.”

Then the investigators exposed the yeast Candida albicans, a major cause of meningitis, to tissue from the hippocampal regions of brains from people who had died of Alzheimer’s and from people of the same age who did not have dementia when they died.

Brain samples from Alzheimer’s patients were 24 percent more active in killing the bacteria. But if the samples were first treated with an antibody that blocked A-beta, they were no better than brain tissue from nondemented people in killing the yeast.
The innate immune system is also set in motion by traumatic brain injuries and strokes and by atherosclerosis that causes reduced blood flow to the brain, Dr. Tanzi noted.

And the system is spurred by inflammation. It is known that patients with Alzheimer’s disease have inflamed brains, but it has not been clear whether A-beta accumulation was a cause or an effect of the inflammation. Perhaps, Dr. Tanzi said, A-beta levels rise as a result of the innate immune system’s response to inflammation; it may be a way the brain responds to a perceived infection.

But does that mean Alzheimer’s disease is caused by an overly exuberant brain response to an infection?

That’s one possible reason, along with responses to injuries and inflammation and the effects of genes that cause A-beta levels to be higher than normal, Dr. Tanzi said. However, some researchers say that all the pieces of the A-beta innate immune systems hypothesis are not in place.

Dr. Norman Relkin, director of the memory disorders program at NewYork-Presbyterian/Weill Cornell hospital, said that although the idea was “unquestionably fascinating,” the evidence for it was “a bit tenuous.”

As for the link with infections, Dr. Steven T. DeKosky, an Alzheimer’s researcher who is vice president and dean of the University of Virginia School of Medicine, noted that scientists have long looked for evidence linking infections to Alzheimer’s and have come up mostly empty-handed.

But if Dr. Tanzi is correct about A-beta being part of the innate immune system, that would raise questions about the search for treatments to eliminate the protein from the brain.

“It means you don’t want to hit A-beta with a sledgehammer,” Dr. Tanzi said. “It says what we need is the equivalent of a statin for the brain so you can dial it down but not turn it off.” (Dr. Tanzi is a co-founder of two companies, Prana Biotechnology and Neurogenetic Pharmaceutical, that are trying to dial down A-beta.)

Dr. Relkin said that even if A-beta were not part of the innate immune system, it might not be a good idea to remove it all, along with the hard balls of plaque it makes in the brain.

In the past, Dr. Relkin said, scientists assumed “that the pathology was the plaque.” Now, he likens removing plaque to digging up bullets at the Gettysburg battlefield.
The more bullets in an area, the more intense the fighting was. But “digging up bullets will not change the outcome of the battle,” he said. “Most of us don’t believe that removing plaque from the brain is the end-all.”

But other scientists not connected with the discovery said they were impressed by the new findings.

“It changes our thinking about Alzheimer’s disease,” said Dr. Eliezer Masliah, who heads the experimental neuropathology laboratory at the University of California, San Diego. “I don’t think we ever thought about that possibility for A-beta.”

Dr. Masliah is intrigued by the idea that aggregates of A-beta may be killing bacteria and brain cells by the same mechanism. He noted that Dr. Tanzi had a track record of coming up with unusual ideas about Alzheimer’s disease that later turn out to be correct.

“I think he’s onto something important,” Dr. Masliah said.

Will California Abandon In Home Caregivers and Seniors?

More than 426,000 low-income seniors and disabled citizens would lose the vital services...328,000 in-home caregivers would lose their jobs....


By Bob DeMarco
Alzheimer's Reading Room


While I am reading this I am thinking, how can a wealthy state be so poorly managed that they find themselves in this position? California's unemployment rate could rise to 14 percent.

It is clear that we are in rough economic period. However, prior to this economic downturn we lived through the longest, and most prosperous economic period in U.S. history.

You can go all the way back to 2000, and the Federal government was running a budget surplus. This was before the housing bubble started and happened.

It is well known that the population is going to age via the baby boom generation. It was known in 1980. Yet, what steps were being taken to address the long term economic health of the country and its citizens?

The inability of our country leaders to sit down and come up with solutions to simple, easily identified health care problems is a good example that government is not the answer.

It is no secret that the U.S. spends twice as much on healthcare as most major industrialized countries. We are now spending more on healthcare then we do on food and housing.

Two independent studies of the health care system indicate that more than $2 trillion are being wasted. You might be surprised to learn that these studies were done by PriceWaterhouseCoopers' and Dartmouth Atlas of Health Care. Both reputable, independent, and not part of a political action group.. These studies are available to everyone, including every single elected official in this country.

The situation that is now brewing in California is likely to spread east in the days and months ahead.

I would be interested in your reaction to this press release. Please use the comments box below this article. Sharing this article with others via email and social media is encouraged

A Mother’s Decision to Die

March 1, 2010, 1:56 pm

By PAULA SPAN
New YORK Times

I was talking to a woman in Rhode Island the other day whose father is in a nursing home with advanced dementia. Her weary mother had voiced a fairly common sentiment: “When I reach that point, just leave a bottle of pills by the bed.”

Readers of this blog often express the same just-shoot-me idea whenever we discuss topics like increasing frailty, cruel progressive diseases and nursing homes.

Sometimes the comments reflect jocular bravado: “My choice, of course, will be to OD on delicious biskits ‘n’ gravy,” Doyle wrote here a few weeks ago.

Sometimes, though, people sound quite serious. “Nature tells us when it is time to go,” Frank in Houston commented. “Sometimes it is up to us to listen to nature and take action.” I found myself wondering if Frank had already made arrangements, or at least started his research.

Expressing such opinions has been much easier and more common than acting on them. The religious and political opposition remains strong. A recent Montana Supreme Court decision brings the number of states where physician-assisted suicide is legal — the advocates at Compassion & Choices prefer to call it “aid in dying” — to just three. (Oregon and Washington are the others.) But even where it’s legal, when competent people suffering from terminal illnesses decide they want to end their lives, such decisions aren’t simple, and shouldn’t be. And their effects are rarely limited to the dying themselves.

That’s why I welcome Zoe FitzGerald Carter’s new book “Imperfect Endings,” an account of her mother’s determination to die when Parkinson’s and half a dozen other chronic diseases made life feel like a sentence instead of a gift. Ms. Carter blends family history with clear-eyed exploration, examining not only her mother’s motives but also the complicated responses of her children and grandchildren.



Consider what happens when Zoe and her sister Katherine are summoned to Washington, D.C., to meet with an “exit guide” — an Oklahoman in a bolo tie whom the family quickly dubs Mr. Death — who has offered to help their mother end her life with a helium contraption.

It’s a comic scene, believe it or not. But it gets serious quickly when Zoe’s mother explains that she’d like to have her three daughters with her at the end.
“Okay, so all three of us will be facing murder charges,” Katherine bellows. “You aren’t addressing the issue. It’s fine with me if you want to kill yourself, but I can tell you right now that none of us, not even Zoe, is going to put herself in legal jeopardy to help you do it.”

I glance towards the door and notice my mother doing the same. “Katherine, keep your voice down,” she says stiffly. “I don’t see why you and Zoe are talking about murder. I’m the one taking my life.”

Eventually, like an uncountable number of other people (including the mother of the
founding New Old Age blogger Jane Gross), Ms. Carter’s mother decides instead to die in a much slower but legal way: She will stop eating and drinking.

I could quote from the book all day (I particularly cherish a bedside debate about whether Ms. Carter’s mother would be buried in a garish Grateful Dead T-shirt), but instead I’ll just recommend that those intrigued by the subject spend a little time with the ailing but ferocious Margaret and her daughters.

A decision to die can sound romantic — rather like Bette Davis drifting beautifully away in “Dark Victory” — or it can sound repugnant. Carter shows us what it was like in reality.

Paula Span is the author of “When the Time Comes: Families With Aging Parents Share Their Struggles and Solutions.”

I feel good when I think of what I have done in the past and what I hope to do in the future?.....

Tuesday, March 2, 2010

By Bob DeMarco
Alzheimer's Reading Room

Patricia Boyle - Rush Alzheimer's Disease Center
"Purpose in life, the psychological tendency to derive meaning from life's experiences and to possess a sense of intentionality and goal directedness that guides behavior, has long been hypothesized to protect against adverse health outcomes"

Individuals who report having greater purpose in their lives appear less likely to develop Alzheimer's disease or its precursor, mild cognitive impairment, according to a report in the March issue of Archives of General Psychiatry, one of the JAMA/Archives journals.

"Alzheimer's disease is one of the most dreaded consequences of aging, and the identification of modifiable factors associated with the risk of Alzheimer's disease is a top public health priority for the 21st century, particularly given the large and rapidly increasing aging population," the authors write as background information in the article. Relatively few of these risk factors have been identified, but data suggest that some psychological factors—including conscientiousness, extraversion and neuroticism—may be associated with Alzheimer's disease risk.

"Purpose in life, the psychological tendency to derive meaning from life's experiences and to possess a sense of intentionality and goal directedness that guides behavior, has long been hypothesized to protect against adverse health outcomes," write Patricia A. Boyle, Ph.D., and colleagues at Rush University Medical Center, Chicago. The researchers assessed this quality in more than 900 community-dwelling older adults without dementia who were participating in the Rush Memory and Aging Project.

Participants' purpose in life was measured by their level of agreement with statements such as, "I feel good when I think of what I have done in the past and what I hope to do in the future" and "I have a sense of direction and purpose in life." After an average of four years and a maximum of seven years of annual follow-up clinical evaluations, 155 of 951 participants (16.3 percent) developed Alzheimer's disease. After controlling for other related variables, greater purpose in life was associated with a substantially reduced risk of developing Alzheimer's disease, as well as a reduced risk of mild cognitive impairment and a slower rate of cognitive decline.

Specifically, individuals with a score of 4.2 out of 5 (90th percentile) on the purpose in life measure were approximately 2.4 times more likely to remain free of Alzheimer's disease than individuals with a score of 3.0 (10th percentile).

The biological basis of the association is unknown, but may result from the positive effects purpose of life is reported to have on immune function and blood vessel health, the authors suggest.

The result may have public health implications. "In particular, these findings may provide a new treatment target for interventions aimed at enhancing health and well-being in older adults. Purpose in life is a potentially modifiable factor that may be increased via specific behavioral strategies that help older persons identify personally meaningful activities and engage in goal-directed behaviors," the authors continue. "Even small behavioral modifications ultimately may translate into an increased sense of intentionality, usefulness and relevance."

Source Archives of General Psychiatry

To contact Patricia A. Boyle, Ph.D., call Sharon Butler at 312-942-7816 or e-mail sharon_butler@rush.edu.

This work was supported by grants from the National Institute on Aging, by the Illinois Department of Public Health and by the Robert C. Borwell Endowment Fund. Please see the article for additional information, including other authors, author contributions and affiliations, financial disclosures, funding and support, etc.

My Buddy Max Wallack, Puzzles to Remember

Monday, March 1, 2010

Max learned that puzzles and similar artistic activities can slow down the progression of Alzheimer's disease and dementia. Research indicates that activities like doing puzzles can be as effective as medication in helping this patient population......

By Bob DeMarco
Alzheimer's Reading Room

It might sound unusual for an old dude like me to be calling a thirteen year old my buddy but that is the way it is.


Max Wallack is an unusual young man. Smart enough that he skipped a couple of grades. He is already in the tenth grade. Smart enough that he will be taking courses at Boston University next year.

Max has several inventions under his belt. He is an award winning inventor.

Max is also an observer. Back in 2008, Max noticed that when patients in Alzheimer's care facilities were engaged in activities that allowed them to use their brains, they had a very different look on their face. They had a brighter look on their face, seemed happier, and calmer. He describes this as "more there".

After a while a bright idea jumped into Max's head, its called Puzzles to Remember.org. Max decided he would convince puzzles manufacturers to give him puzzles, and then he would deliver those puzzles to Alzheimer's care facilities. After a while he started shipping puzzles all over the country.

To date, Puzzles To Remember has distributed 3000 puzzles, to 120 Alzheimer’s caregiving facilities, in 27 states throughout the United States and Canada.
Recently, I introduced Max to Carole Larkin of ThirdAge Services in Dallas, Texas. Carole sent Max some money (donations), and Max shipped big boxes of puzzles to Carole. Carole started handing out puzzles with a flyer Max created, and soon people in Alzheimer's care facilities started sending Max checks. He sent puzzles.

Max did some research before he started PTR:

Max learned that puzzles and similar artistic activities can slow down the progression of Alzheimer's disease and dementia. Some research indicates that such activities can be as effective as medication in helping this patient population.
Other people are starting to understand that art improves the life of persons suffering from Alzheimer's. Max understood this from his observations. I call this Bunk House Logic. Max is a real cowboy. When Max goes into his bunk house look out world.

Maybe you would like to get involved -- Do Something. It is pretty simple and straight forward. You, your organization, or someone you know that is involved with Alzheimer's sends Max 25 bucks. He sends a big box of puzzles to whoever you designate. If you don't designate an Alzheimer's care facility not to worry, Max has a long list of Veteran's Administration care facilities that are waiting for puzzles.

You don't have to limit your donation to 25 bucks. You can send more or get involved. Max needs all the help he can get. Max needs people to raise funds, and some people to spread the word about his offering. Maybe your kids want to get involved with Max.

Max has another need. He needs to find a manufacturer that will make 6 to 60 piece puzzles at a good price. If you can help or advise on this issue, please contact me.

You can learn more about Puzzles to Remember by visiting the website. You can also contact Max via that website.

Consider this, you take some action and you help change the world not only for a growing number of patients suffering from Alzheimer's; but also, for the families of those patients. At the minimum you will help these families learn there is "more there". Or maybe you'll bring some joy and happiness into their lives.

Joy and Happiness, join in.

Fighting Alzheimer's with a touch of beauty

From The Sunday Times
February 28, 2010
A pioneering care project demonstates how literature, music, art and love can improve the lives of dementia sufferers

In her heyday, Rita Hayworth was known as the “Love Goddess”: so explosive was her appeal that her image was placed on the first nuclear bomb to be tested on Bikini Atoll after the second world war. As befits one of the world’s most glamorous women, she danced her way through 61 movies and five husbands. She was a pin-up for American servicemen and is listed as one of the American Film Institute’s greatest stars of all time.

But if Hayworth’s early life was sprinkled with stardust, her later life was tinged with tragedy. In her fifties, with a well established drink problem, she began to suffer mood swings and memory loss.

“The first signs were fear and extreme mood changes, paranoia — calling the police because she heard a burglar — and confusion. As a daughter I felt helpless,” says Princess Yasmin Aga Khan, Hayworth’s daughter by her third husband.

Nobody knew what the real problem was until Hayworth was diagnosed with Alzheimer’s in 1981, at just 63 years old. “It was extremely painful but I had to deal with it,” says Khan, who moved her mother into an adjoining apartment in New York and cared for her for the next six years until she died.

Hayworth’s behaviour could be nightmarishly difficult. She suffered from the anxiety, aggression and agitation common to Alzheimer’s, but as the disease progressed she found something that soothed her mood and gave her a focus — painting.
As her mind disintegrated, she worked away at an easel in her apartment, producing beautiful, detailed likenesses of flowers. “So many people give up with this disease,” says the princess, who is now president of Alzheimer’s Disease International, the umbrella organisation for Alzheimer’s associations around the world, “but it brought her peace of mind and helped her to relax.”

Could Hayworth’s experience help us to understand how to support and treat people with Alzheimer’s? John Zeisel, the founder of a pioneering programme caring for people with Alzheimer’s in the United States — endorsed by Khan — and a visiting lecturer at Salford University, believes that it could.

“What the scientific research tells us is that Alzheimer’s attacks the part of the brain that handles what we call logic — the executive function that copes with handling complex situations. Taking a photograph, for instance: you have to find the camera, slot in the memory chip, work out where the shutter button is and so on . . .

“But what’s not damaged is your appreciation of a beautiful picture. The part of the brain that deals with emotions is shaken up by Alzheimer’s but it’s not damaged in the same way. In fact, emotional response seems to be heightened, not lessened.”

In other words, people who appear to be lost to the world can still be reached through art, literature and music — and love. At Hearthstone, a group of seven homes looking after some 220 people with Alzheimer’s that Zeisel had helped to found in Massachusetts, residents are encouraged to paint and are taken on regular outings to galleries. They have reading circles and a film club.

“The development of new drugs to treat Alzheimer’s is helping people live a little bit longer,” says Zeisel. “What we’re asking ourselves is, how do we make that life worth living?”

Life expectancy remained low for centuries — in 1900 it was still only 47 — but advances in medical science and public health have added another 30 years to our lives. A British man can now expect to live until 77 and a woman until 81.

That increase in lifespan has brought with it a tidal wave of dementia, for which there is no cure. There are 700,000 people living with dementia in the UK, some 417,000 of them with Alzheimer’s. By 2015 that total is predicted to reach 1m and by 2050 it will be 1.7m.

“Everything has happened so fast we don’t know what’s hit us,” says Zeisel. “One of the reasons everybody’s so afraid of Alzheimer’s is that there are so many unknowns. When someone is diagnosed, we grieve for their lost future. But maybe everything isn’t lost: we have to get past the fear and grief to see what remains.”

I’m Still Here, Zeisel’s book about the development of the Hearthstone programme, is to be published in paperback by Piatkus next month. On March 15 he is hosting an arts and dementia day at London’s October gallery, an event that is already booked out.

One of the first things the Hearthstone team looks for is an activity that elicits a response from a new resident. It might be an old hobby — gardening, perhaps — or something new. “Families come in and say, ‘My father doesn’t dance’, and I say, ‘Well, we’ll see — maybe he’s never been surrounded by women and nice music before’.”

They then build a routine around the activity. George, a former teacher, arrived at Hearthstone anxious and aggressive and, on the assumption that he would like books, was taken to the library. He now runs a residents’ book circle at 10 o’clock each morning.

“It’s a reason to get up and get dressed,” says Zeisel. “If he’s upset or confused, the staff will say, ‘You’ve got to get dressed, the book group needs you’. He has a meaningful role. He passes books around, he and the others read aloud. Often people with dementia give up on reading because the type is too small. It seems confusing but it’s easy to fix — our books have large type.”

This kind of meaningful role, plus a simple routine, is key to helping people with dementia cope with life. “It’s not just about activities,” says Zeisel. “If it’s ‘bingo at 10, muffins at 11’ one day and ‘reading at 10, gardening at 11’ tomorrow, that doesn’t work. It’s confusing. If we go to an art gallery, we go every Tuesday at 11. Someone might say they don’t want to go but after a month they’ll wake up and hear it’s Tuesday and think, ‘Okay, it’s gallery day’.”

One of the things we need to get away from is the constant testing of people with dementia, he says. Bombarding them with questions compounds confusion with a sense of failure. Rather than say, “Mum, do you know who I am?” it is better to walk in, take her by the hand and say, “I’m your daughter and I love you.” And smile. You’ll reach the bit of the brain hard-wired to respond. If you are looking at a painting, don’t test her on whether she can remember who it is by: instead, open a conversation about the shapes and colours.

People with Alzheimer’s need to stay useful. They might not be able to find the dinner plates, but if you get the plates out of the cupboard they can put them on the table. This is not a cure, nor even a replacement for drugs, although Zeisel insists that the more effective the “person-centred” care, the lower the need for the antipsychotic drugs used to treat Alzheimer’s.

In essence, it is about quality of life for the people with Alzheimer’s and their families. You don’t need a team of highly trained art therapists on hand to make a difference. If you are one of the thousands of people stuck at home caring for someone with Alzheimer’s — saving the government an estimated £6 billion a year in the process — here’s what to do.

“Start an Alzheimer’s community,” says Zeisel. “There will be a cafe near you that’s quiet at 10 o’clock on a Tuesday morning run by some nice person who will smile at your mother. Find other people in your situation and invite them along.

“Go to a museum, same date, same time. Create a routine so the person you’re looking after gets used to it and expects it.

“Start your own film club. Rent a bunch of films you think your mother might like. See what interests her. It might be she can’t watch a whole movie but loves 10 minutes of Singin’ in the Rain. Play it when she’s agitated and remember: everybody is reachable, it’s just finding the way to do it.”