Issue 7, June 2001

A Real Breakthrough

Exciting new research on mice has resulted in the elimination of all Alzheimer's plaque soon after the mice were antibodies made from vaccines. Additional studies are being done.

The Director of the Centre for Molecular Biology at Germany's famed Heidelberg University, believes that "Alzheimer's could be controllable, maybe even curable."

Researchers at Elan Company in Ireland developed the vaccine which has proven effective against plaque buildup, before it builds up. The vaccine has already been successfully tested on two dozen Alzheimer's patients, not just on mice!

Since there seem to be no major side-effects, major clinical testing will begin. Ultimately, as many as 5,000 patients may be tested. In a few more years, the effectiveness and potential side effects will be clearly established.

One theory is to combine a number of readily available treatments, including drugs that break down plaque, anti-oxidants (such as Vitamins C and E), using neurotransmitters in the brain, and possibly, cholesterol-lowering medications.

Genetics, which is being intensely explored, is another vital pathway to a cure. Scientists can already manipulate genes, which is both frightening if used for evil, and thrilling if used to sustain and improve life.

Imagine a world where we can grow old without the terrible spectre of Alzheimer's hanging over us.

Thank God, we are getting closer to the slowdown and/or elimination of Alzheimer's and similar diseases, within one or two generations.

— Nancy Wexler

Issue 6, May 2001

Government and Care Facility Industry Agree: Patient Welfare More Important Than Saving Money

Well, we can dream.

Anyway, to continue from my last newsletter, promoting the value of live music and music therapy in the care of Alzheimer¹s patients.… Another extremely useful addition to the health of your elderly loved ones, is strength and agility training.

Falling is one of the most devastating dangers which can (and does) happen to older adults, at home or in care facilities. One slight misstep, one poorly lit or stupidly designed ledge, and a once vigorous patient can be physically disabled for months or the rest of their life.

The addition of a major physical limitation, especially to the life of an Alzheimer¹s patient, not only severely hurts their remaining quality of life, but it also often leads to a more rapid deterioration in their condition.
Strength training is a normal part of the Chinese cuture, through the art of Tai Chi, practiced daily by millions of young and elderly Chinese throughout the world. Research has shown that Tai Chi can reduce falls by up to 50% in some groups.

Tai Chi is a simplified form of carefully-controlled, slow-motion movement that can be done by most patients. The usefulness of Tai Chi does not depend on how perfectly or completely it is done. There is no right or wrong, no competitive-ness, no victory.

Tai Chi is not a sport. It is a series of physical movements that effectively exercises muscles, but has the opposite goal of bodybuilders. It is extremely calming, helps combat depression and regenerates the spirit.

By the way, it¹s also fun.

Alzheimer¹s patients can receive the benefits of Tai Chi by practicing it, at any level of physical stamina and competency. Patients with very poor sense of balance can practice an abbreviated form of Tai Chi while sitting down. It can even be done from a wheelchair.

Tai Chi costs a facility nothing, does not need a professional Tai Chi trainer and can be performed indoors or outdoors in a relatively small area, since each person moves in a limited spot.

Staff members and interested family members can learn basic Tai Chi from any number of illustrated books. Patients can then be guided individually or in groups.

As a major side benefit to all of us, practicing Tai Chi will also help our stamina, patience, balance and possibly even improve immunity, so that we can get through our daily stress in better physical and mental health.

— Nancy Wexler

Issue 5, April 2001

Music Therapy

A startling, simple and profoundly logical new therapy to help patients with Alzheimer's, Parkinson's, cerebral palsy, autism and other physical diseases is being used in Europe and Asia.

Created by Takehiko Akaboshi of Japan in 1972, "ryouiku ongaku" (therapeutic music), has proven to give major relief to many patients suffering from illness of the mind, body and spirit.

Even though it is already over 28 years old, and has been effectively used on multi-thousands of patients, the therapy is still generally unknown in the West, and too infrequently used by nursing staff or caregivers.

The value of such intensive therapy is unfortunately more recognized by those in the music education field, than by those in the health care field.

It is based on the now accepted theory that, by hearing music, the brain is stimulated into heavy activity, reducing the immediate negative effects of many diseases, and possibly even slowing the progression of dementia.

The amazing effect of music has been shown to be even more powerful when it is performed live.

Care facilities can creatively use the talents of music students and amateur musicians. By contacting local colleges, high schools and music clubs, a steady supply of enthusiastic VOLUNTEER musicians can be programmed, providing Alzheimer's patients with live music weekly, or even daily. Most musicians can bring their own instruments.

While many facilities provide (often half-hearted) "sing-alongs" of favorite old songs, this is distinctly different than the much stronger therapeutic stimulation provided by listening to live musicians.

(Note: No studies have been specifically made on the effects of rap music, heavy metal or grunge rock, so I would be more old-fashioned in my music selection. Classical, religious, country, the Beatles, Carpenters, Joan Baez, romantic, soft and traditional world music might be most useful. It would be an invaluable study to determine if present-day teens respond positively to their own more familiar music, when and if they develop Alzheimer's.)

It is sadly true that underpaid and under-trained workers in the often under-staffed Alzheimer's facilites are overwhelmed with their duties, just trying to keep everything functioning at a basic level. There seems to be little time (or interest from management) to consider additional music therapy, no matter how effective it has proven to be.

But with enlightened ownership and caring leadership, facilities can improve the lives of their residents enormously, at VERY little additional cost.

Find time to enjoy your favorite music now. It can also have provide tremendous redemptive effects in the future.

— Nancy Wexler

Issue 4, February-March 2001

Stay at Home Elder Care Management

There is a problem with some caregivers being insufficiently trained. Geriatric care managers offer a solution by monitoring the quality of care and making sure that caregivers are, in fact, adequately trained.

Give caregivers the support of professional geriatric care managers and they may reward you by delivering compassionate, professional care and remaining on the job for a long time.

Caregivers (CNA's & HHA's) who carry tremendous responsibility often feel the weight of high expectations. Family members and home care agencies demand a high level of professional commitment and performance.

Faced with the juggling act of running successful businesses, home care agency owners often are stretched in four or five different directions at the same time. Faced with multiple demands, many of them urgent, the agency owner frequently is unable to train, support, and monitor the caregiving staff. Caregivers who don't receive adequate training, however, tend to become frustrated and discouraged. The net result has been high turnover.

The situation becomes even more complex when you factor in the often unspoken assumption by some providers that investment in employee development won't pay off because employees always leave anyway.

High expectations are placed on caregivers by the elderly and their families.

Family members expect the caregiver to:

• Deliver compassionate and professional care to elderly parents
  Interact positively with family members
• Perform many duties requiring physical exertion and great patience
• Be reliable and willing to work as needed
• Work for relatively low wages

While none of these expectations may appear to be unreasonable, caregivers can quickly become disillusioned and frustrated if they aren't provided the skills, training, and support from a care manager to do their jobs properly. The caregiver may leave, or he may stay, but without care management, may deliver less than exceptional elder care and suffer from low morale which demoralizes everyone involved.

For their part, caregivers expect:

• The tools, training, and support from care management professionals necessary to do the job well
• Opportunity for education and training
• Respect and recognition for a job well done

In short, the caregiver expects to be treated as a professional, which isn't unreasonable. If family members demand professional performance overall, i.e. they must commit to providing the requisite training, care manager monitoring, and recognition to enable their success.

It isn't unusual for caregivers to feel that their legitimate professional expectations fall to the bottom of the list.

Although there's no panacea to the challenges of staffing a home with a good caregiver, clearly the one avenue of endeavor that helps meet everyone's expectations is professional geriatric care management. With guidance and support from professional GCMs, caregivers in the home are far more able to meet expectations for delivery of quality car. When they know the professional geriatric care manager comes once a week, caregivers for the elderly know they have to keep on their toes - - and also that they have someone to talk to about their concerns and problems on the job or with the family. The geriatric care manager then is able to be the glue that holds good home care together so that aging people and their family members have less stress and increased well being.

Families Need Better Education in Care Techniques

Survey of Caregivers in New York Reports Lack of Essential Training and Support

Approximately one million people in New York City are family caregivers, and most have received little or no training from health care professionals to provide this demanding and often complex care.

These are among the findings of a recent random telephone survey of New York City caregivers, representative of the city's overall population, which was funded by the United Hospital Fund and the Visiting Nurse Service (VNS) of New York. In July, the Fund, in partnership with VNS, published the findings in a special report A Survey of Family Caregivers in New York City: Findings and Implications for the Health Care System.

Untrained Caregivers
The survey found that nearly 60 percent of caregivers reported that they received no training from health care professionals for essential care responsibilities, such as bathing, feeding, or moving a patient from bed to a chair. While these tasks may appear simple, they can be extremely difficult to perform when a patient is ill or disabled. Special techniques must be used to move patients, for instance, to avoid injury to both the caregiver and the patient -- techniques that many professionals learn as a routine part of their training.

Additionally, family caregivers reported disturbing gaps regarding instruction for medical tasks. For example:

• 38 percent of caregivers reported having received no training on how to properly change bandages and dressing.
• Almost a fifth was given no formal instruction on how to operate essential medical equipment; and
• 16 percent were not instructed on how to manage a patient's prescription medication schedule.

"We've observed for some time that many family caregivers don't receive much straining and support," said Carol Levine, director of the Families and Health Care Project and lead author of the report at the Fund. "The findings of our focus groups of family caregivers, published in 1998 in Rough Crossings: Family Caregivers' Odysseys through the Health Care System, gave us anecdotal evidence to support this observation. Now these survey data confirm what we've hypothesized all along."

Hospitalization: A Time for Intervention
Not surprisingly, the study found that a care recipient's hospital stay triggers more intense, complex, and time-consuming care responsibilities for caregivers after discharge. For instance, compared to caregivers whose family members had not been hospitalized in the past year, those caring for a patient who had been hospitalized were about twice as likely to bathe a care recipient or mange incontinence, and about three times more likely to help with dressing, feeding, getting in and out of bed, and walking across the room. The report's authors suggest that, for health care professionals, hospitalization and the period after discharge are crucial times to educate caregivers and put in place ongoing support and coordinated services.

"Hospitals aren't the only institutions that should be working to better prepare and support family caregivers after discharge," said Carol Raphael, president and CEO of VNS. "Home care agencies need to step up efforts to train caregivers at these times so they can better manage when home care workers aren't around."

Going It Alone
Most respondents of the survey -- 85 percent -- had not arranged for hired help in the home, such as nurses, physical therapists, or home health aides. The reasons ranged from their own or the care recipient's choice, lack of financial resources, or lack of trust. For the 15 percent who hired or managed help, however, more than two-thirds worried about neglect or mistreatment of their loved one, even though most rated the quality of care as good or excellent.

Vulnerable and "Heavy-Duty" Caregivers
The report calls attention to two groups -- vulnerable and "heavy-duty" caregivers -- for whom caregiving poses the greatest risk for illness and hospitalization. Vulnerable caregivers were defined, in part, as those who already have serious health problems. One of five New York City caregivers was classified as vulnerable, and almost 60 percent of these caregivers had been caring for someone for more than five years.

"Heavy-duty" caregivers were defined as those who performed the greatest and most intense amount of care. Almost half of all New York City caregivers fell into this category, and they were more than two-and-a-half times more likely to report that their health had suffered as a result of caregiving.

While the report calls for health care professionals to better support all caregivers, it suggests that the health care system make directing resources toward vulnerable and "heavy-duty" caregivers the highest priority.

Recommendations for Change
Based on findings from the survey, the report's authors recommend that hospitals, medical professionals, and home care agencies recognize, anticipate, and put services in place to meet the reality of increased burden for families after their loved ones are discharged from the hospital. This includes the provision of caregiver education, adequate home health care, and emotional support for the often trying experience of caregiving. The report also suggests that insurance companies, government payers such as Medicaid and Medicare, and managed care companies recognize the importance of educating and supporting caregivers and adequately reimburse this training and support.

With regard to caregivers' and patients' widespread worry about mistreatment and neglect by home health care workers, the report recommends that home care agencies recognize that this problem exists and work to build trust among caregivers. Finally, the report asks health care professionals to call increased attention to the special needs of caregivers who shoulder the greatest burdens.

The New York City survey was an adjunct to a national survey of family caregivers conducted by the Harvard School of Public Health, the National Opinion Research Center at the University of Chicago, and the Henry J. Kaiser Family Foundation.

SOURCE: Blueprint, Fall 2000, published by United Hospital Fund.

Issue 3, January 2001

Resolutions for the New Millenium

To be read ritualistically on the first of every month (and anytime necessary in beween)....

(1) Be patient with your loved one.

Your loved one cannot be the same person they once were, never again. It is not their fault. It is the natural cycle and logic of Life.

There could not have been any good times, if there are not bad times to contrast them with. Bad times help us remember good times. Bad times can help us prize good times and life much more deeply.

(2) Be patient with employed caregivers.

Their work is stressful. They get tired, sad, depressed, and sick. They have many bills and problems supporting their families. Caregivers are just normal human being, like us...not perfectly functioning superhuman machines, without feelings. If they were only cold machines, built to do our bidding, they could not possibly help our loved ones.

Caregivers have needs too: emotional, psychological, financial, and physical. They also can lose patience occasionally, despite their best humanistic intensions (and hopefully, their professional training, if they have had any). Of course, they must never become abusive.

Caregivers, whether employed or even our own volunteer family members, need to feel appreciated, with a few genuinely kind words to soothe the stress.

(3) Be patient with yourself.

As an adult, you have your own complex, complete life...full of major responsibilities, pressures, work, and family obligations. Your friends require your time. Your boss requires your time. Your children require your time. Your elderly loved one requires your time.

Where do you get enough time...and energy? How can you feed yourself emotionally?

If you give ALL your emotional energy to your needy loved one with Alzheimer's or some other devastating disease, you will be starving.
Feed yourself first! Then you can help the other important people in your life with more focused energy and joy.

We all try to do our best. We often fail. (Even me!) The best medicine is to laugh, take a break, relax, be with our friends, give ourselves little gifts, and try again.

Suggested little gifts to yourself: chocolate, a movie, flowers, new clothes, a walk in nature, playing with a pet, calling a friend, a glass of spirits, music, trying a new hair style, a short vacation (anywhere), redecorating, playing with children, getting a good night's sleep.

I want to wish you all a Happier New Year!

— Nancy Wexler

Issue 2, December 2000

It is time for post-election blues and/or celebrations, but it is not time to lower our determination to help make the lives of our elderly loved ones better.

It is not good enough just to maintain life. Promoting and providing QUALITY OF LIFE, within the sometimes terrible, unjust limits of reality, is essential. We all must remain vigilant, informed, and seriously committed to investing our limited time and money in the fight for dignified and humane treatment of still living, still feeling, real life human beings.

Regarding this goal, here are two items of note.

Nursing Home Reform

According to the AARP, which has rigorously fought to help senior citizens in nursing homes, California is significantly below the national average in staff time spent with residents. AARP believes that increased staffing is essential for better care.

Of course, not only more staff, but MUCH better trained and (sensitively selected) caring staff is vital.

It is estimated that there are 350,000 wrong doses and accidents in nursing homes every year. Taxpayer money must be spent wisely, but it should not be hoarded when the minimal quality of life and sometimes the very survival of seniors are at stake.

Don't let government leaders forget their seemingly invisible (non-voting) constituents who are confined to nursing homes. All concerned caregivers and families (in every state) should individually write strong personal letters to their print and television media, their governors, as well as to their state Senate and Assembly representatives.

Hospices

Two important groups represent hospices which counsel families and help with the care of terminally ill loved ones, making their final days as loving and humane as possible:

Hospice Foundation
2001 S St. NW
Washington, DC, 20009
800-854-3402
www.hospicefoundation.org

National Hospice & Palliative Care Organization
1700 Diagonal Rd., Suite #300
Alexandria, VA 22314
703-243-5900
www.nhpco.org

— Nancy Wexler

Issue 1, November 2000

On the human front

While major changes in computer technology advances every 3 to 6 months, no such rapid advancement is being made on the human front.. The corporate onslaught to achieve smaller, lighter, faster, cheaper, more complex chips, hardware and software, is not attempted with similar funding, determination, or high-level resources, with regard to the human condition.

This is especially true when the subject is "old age" and Alzheimer's Disease. Research is relatively minimal, considering the fact that old age hits us all, while Alzheimer's and other dementia diseases will affect a majority of the winners in the "Old Age Race." (Ironically, those who win this race may suffer the most.)

On the surface, it may seem that there are less profits to be made on the elderly than on younger, economically active business people and computer nerds. This is the short-sighted approach which has infected American corporate thinking during the more recent coagulation of wealth and power, to the detriment of society and individuals.

"High-tech" solutions to the problems of old age are few. They are very real, not created by marketing geniuses. "Problems" may be the wrong term...They are devastating and traumatic events, permanently changing the lives of patients and families, and never for the better.

Board and Care, and Nursing Homes (by whatever new "softer" name they go by), are still in the primitive stage. While some are managed by caring, knowledgeable professionals, too many are not. Those with greater vision, more social responsibility, or perhaps, smart capiatalists who seek even greater profits, realize the infinite market of the aged and infirmed, which has been barely touched.

On the drug front

After years of clinical trials, CognexTM finally became available for Alzheimer's patients. It had limited effectiveness under certain conditions, the major side-effect of possible liver damage, which required consistant monitoring, and in the end, only slowed down the disease. Now, AriceptTM is being used instead. It too only slows down the unrelenting progress of dreaded Alzheimer's, but the side-effects are less devastating. ExelonTM is another similar drug.

Unfortunately, Alzheimer's = forgetfulness. Patients (with and without memory loss!) often forget to take their medications. As with most other drugs, AriceptTM and ExelonTM must be taken regularly.

Someone who is organized and caring must be with a patient to assure that the proper dosage is consumed every day. Who will do this? Who will pay for someone to do it? The search continues for a even better medications that slows down Alzheimer's long enough so patients can maintain a higher quality of life.

The pragmatically philosophical idea is to die of something else less debilitating to the human spirit. The practical purpose is to allow loved ones more time together.

Scientists are also working on a vaccine for prevention, but this is not a realistic expectation for now. Genetic studies reveal that after age 85, about 50% of the population will get Alzheimer's Disease. It is such an enormous number of people. Only during the Black Plague, Holocausts, and mass starvation does the world approximate such numbers.

The caring for so many human beings is far beyond the level of funding, expertise, and overall kindness which we are now capable of. But it is time. We must catch up to the realities of growing old, including Alzheimer's.

What society chooses to do about these facts will determine its future and the quality of life for us all, healthy or not, old AND young.

— Nancy Wexler