Janet has always been close to her aunt, and when Gloria asked her to serve as power of attorney, she was happy to do it. Since that time, Gloria has been diagnosed with Alzheimer’s disease.

When the family decided that it was time for Gloria to move from her large apartment to a community that offered independent and assisted living, Janet knew she needed help. “The people at the community highly recommended Felco Packing & Moving,” recalled Janet.

From day one, Jeff Feldman and his staff have made Gloria’s many moves as seamless as possible. “That first move was the biggest move I’ve ever made in my life,” explained Janet. “She had as much furniture as a house in that big apartment, but Mr. Feldman was always accommodating.”

While the professionals handled all the heavy lifting, Janet was able to help her aunt prepare for the transition. “They packed up anything and everything that I asked and moved it out. There wasn’t anything they wouldn’t do,” she said. After moving all the furniture out, Felco also helped the family set up the new apartment, relocate furniture to several different family members, and donate unwanted items.

As Gloria’s condition has worsened, Janet has called on Felco two additional times for packing and moving assistance. The first was when her aunt moved to a new assisted living community closer to her sister. Here, she initially had two adjoining rooms, so she had plenty of space to spread out. Recently, Janet decided that her aunt would be more comfortable in a single room.

During both moves, Janet has been relieved to have the help of Felco. “Just to know that when you call, they are ready and able to help whatever day and time you need them is amazing,” she said.

Janet continues to be a dedicated caregiver for her beloved aunt Gloria, who is safe and well cared for in her new community. While Janet admits that caregiving has its challenges, she now knows that having the right professionals on your team can help turn awesome tasks into remarkable success stories.

Whole body registry programs offer an important option for individuals who want an alternative to a traditional funeral and burial. As opposed to organ donation programs, these programs allow individuals to donate their entire body to science. Working with a variety of researchers and doctors, whole body programs ensure that donations make a significant difference toward curing, treating, and preventing prominent diseases and maladies. These include: Asthma, Alzheimer’s disease, Cancer, Carpel Tunnel Syndrome, Diabetes, Heart Disease, Osteoporosis, Parkinson’s disease, Rheumatoid Arthritis, and a variety of other ailments.

With traditional willed body programs, individuals donated their body to a single hospital, university, or organization. By donating remains through a whole body donation registry, donors spread the benefit of their gift throughout the scientific community. A variety of educational and health institutions enter into agreements with body donation programs to receive remains. These agreements stipulate certain accepted practices for handling remains and prohibit the sharing and redistribution of donated material.

It is important to note that whole body donation in no way interferes with traditional organ donation programs. Body donation programs understand the vital importance of organ donation. To that end, the programs work collaboratively with organ banks to ensure that organs are recovered and delivered in a timely manner. This means that individuals can donate their organs and provide life-saving transplants and also donate their entire body to help medical research and training in a variety of fields.

Generally, body donation programs have few qualification restrictions. 99% of all potential donors are accepted into the programs. Individuals who cannot be accepted include those who have been diagnosed with HIV/AIDS, Hepatitis B, Hepatitis C, Tuberculosis, Creutzfeldt – Jakob disease, or Meningitis. Additionally, people who weigh over 350 pounds cannot be accepted.

If family members do not support the donors decision to donate their remains, they cannot be accepted either, as body donation programs go out of their way to respect the wishes of loved ones. Individuals must also be above the age of 18 and a U.S. citizen living inside the continental U.S. There are no additional age or medical stipulations for qualification.

Individuals can pre-register with a body donation program to ensure that the donation process goes smoothly. Pre-registration also helps individuals to clearly outline their personal wishes for family members to follow. While registering for donation, individuals can choose to have their remains submitted for cremation after they have been used for science. There are generally no costs associated with the cremation process, and remains will be shipped to family members two to four weeks after donation.

For donors and their families, there is no cost associated with the body donation process. Body donation programs cover their operating costs through payments from researchers and doctors who participate in the program.

To fully understand the magnitude of their loved one’s contribution, donor families can request to receive a letter describing the myriad organizations and programs that have benefited from their loved one’s donation.

Body donations provide an immeasurable gift to scientific and medical professionals who are avidly working to find new treatments and cures for diseases that dramatically affect the lives of a large portion of the U.S. population. Body donation is a legacy that donors can pass on to the countless individuals who will benefit from their generous gift.

In 1964, my mother-in-law was diagnosed with dementia. In those days, the doctors said the disease was caused by hardening of the arteries in the brain. Because of the way her disease progressed, today her diagnosis would most likely be vascular dementia and Alzheimer’s disease. I took care of my mother-in-law-who was also one of my best friends-for the last four years of her life. I learned to prevent or circumvent her difficult behaviors. The experience was invaluable.

In the early 80s, my husband, John, and his sister, Ellen, began exhibiting behaviors that caused Ellen to ask her brother, “John, do you think we are getting what Mother had?”

Perhaps knowing what to expect made it a bit easier for us all. By 1990, I was caring for John and Ellen, who both had Alzheimer’s disease. Ellen was living in Richmond in an assisted living facility. John and I traveled from Baltimore to make weekend visits twice a month. I learned about long-distance caregiving.

In 1992, I moved Ellen to a nursing home close to me; John started daycare. I began attending two support groups. They were my life-line to sanity. I learned, and I laughed. I met wonderful people at Ellen’s Alzheimer’s unit, at John’s daycare, and at my support groups.

Soon, I was a facilitator at both support groups and began my work at the Alzheimer’s office. When John and Ellen died within two months of each other in 1998, I continued my work with the Alzheimer’s Association.

Later, Ellen Young, author of Between Two Worlds: Special Moments of Alzheimer’s and Dementia, suggested we work together on a book dealing with Alzheimer’s disease and denial. I enthusiastically agreed. I knew from my personal experience with the disease, and my work with the Helpline, what a serious problem denial can be for the caregivers of Alzheimer’s sufferers. Denial can dog our footsteps all through the Alzheimer’s Journey. Caregivers find themselves thinking: “There’s nothing wrong with Dad. He’s just getting older.” They may even say things like: “Mom isn’t ready for daycare,” “Dad can still drive, can’t he?,” or “Nursing home. Never!”

Our book, Mom’s OK She Just Forgets: The Alzheimer’s Journey from Denial to Acceptance, will be out in the fall of 2006. We want this book to be a comforting companion for families and caregivers, enabling them to gradually move from denial to healthy, healing acceptance. We want caregivers to learn a new approach; one that will bring success in dealing with the problems of Alzheimer’s disease.

Through this book, I have been able to share much of the hard-earned knowledge I have gained by living with Alzheimer’s disease for years. It also reflects the power of the love I have known in my relationships with my friends at the Alzheimer’s Association.

Sincerely,
Evelyn McLay

In either instance, the evaluation of the new drug is done in what is called a “blinded” fashion. That is, the clinicians evaluating the participants do not know what treatment they are getting, so there is no chance that any preconceived notions that the clinicians have can influence the outcome.

There is widespread agreement that this is the way new medications should be evaluated. Recent experience alone suggests that it is not possible to be sure in advance that a drug is truly effective unless it is tested in this standardized fashion. For example, many scientists believed that estrogen treatment would delay the onset of dementia, but the clinical trial actually showed that older women taking estrogen had an increased risk of dementia rather than a decreased risk.

Despite the importance of clinical trials, not enough people are volunteering to participate in clinical trials for Alzheimer’s disease. The national group of scientists that conducts clinical trials with Alzheimer’s patients (known as the Alzheimer’s Disease Cooperative Study group) has had so much trouble recruiting patients into trials that several trials they have undertaken in the last few years are still incomplete. The leader of this group estimates that only 1 percent of AD patients are in clinical trials.

This is, unfortunately, not a problem unique to Alzheimer’s disease. Leaders of clinical trials in other disease have found the same thing. Only clinical trials in breast cancer appear to be different; in that instance, 3% of patients are enrolled in clinical trials.

The low numbers of people volunteering to be in clinical trials may not only mean that it takes longer to evaluate a new medication to see if it works, but it may also influence the willingness of pharmaceutical companies to invest in Alzheimer’s disease research. Pharmaceutical companies want to know that if there is a promising drug, it will be possible to evaluate it as efficiently as possible.

Large clinical trials are very costly (a single large trial may cost more than 250 million dollars). And the longer it takes to recruit enough participants, the more costly the trial will become. Thus, the difficulty in recruiting patients is one factor in making a decision about whether or not to mount a large clinical trial.

Perhaps one way of changing this situation is to help people understand how important clinical trials are in finding improved drugs for patients. Researchers also need to get a better understanding of the reasons that people are reluctant to volunteer for clinical trials. Both things need to happen in order to find better treatments for Alzheimer’s disease as soon as possible.

For more information or to participate in a clinical trial, visit www.alzgmd.org (in the State of Maryland), www.alz-delawarevalley.org (in the Delaware Valley), or www.alz-nca.org (in the D.C. Metro region).

This article was contributed by the Johns Hopkins Alzheimer’s Disease Research Center.

The Association’s Contact Center delivers around-the-clock service nationwide. The unique partnership between the Association’s national office and the chapter network provides families, caregivers, health care professionals, and the public with the most up-to-date information on Alzheimer’s. The Contact Center network of 70 chapters handles more than 23,000 calls each month.

Support groups provide practical help in coping with the disease and can serve as an outlet for feelings and frustrations as well as an important source of information. The National Capital Area Chapter offers more than 70 support groups for families and caregivers, people with early-onset Alzheimer’s (under the age of 65), early-stage diagnosed individuals, and Spanish-speakers.

If you can’t find time to attend a support group, help is just a mouse click away at the Alzheimer’s Association’s message boards and chat room at www.alz.org. Among the forums are groups for caregivers, health professionals, and people with memory loss. Other categories include sections featuring success stories, questions for care consultants, and news on Alzheimer medications.

Education programs are an integral part of the Association’s mission. The National Capital Area Chapter offers a variety of education programs, with topics ranging from caregiver skill-building to legal and financial concerns. Annual caregiver conferences provide a more in-depth look at specific caregiving concerns. A new program, “Life After Diagnosis,” helps those faced with a recent diagnosis to prepare for the challenging journey ahead. Our “Partnering with Your Doctor” program assists people with memory loss and their loved ones in receiving the best possible health care through improved cooperation with their physicians and offers specific tools and strategies to improve communication and understanding. The Association’s Maintain Your BrainT public awareness campaign is educating people about a brain healthy lifestyle. We also provide dementia-specific training to professionals in the caregiving, health, safety, and law enforcement communities.

Alzheimer’s Association Safe Return is a nationwide identification, support and enrollment program that provides assistance when a person with dementia wanders and becomes lost locally or far from home. If an enrollee is missing, one call immediately activates a community support network – including law enforcement and local media – to help reunite the lost person with his or her caregiver. The nearest Association Chapter office provides information and support during the search and rescue efforts.

Advocacy is a major component of the Alzheimer’s Association mission. Alzheimer’s advocates are people with memory loss, caregivers, friends, and families whose voices together are a powerful tool for change and provide hope for a future without Alzheimer’s. Advocates are calling for advancements in research and enhanced care and support at the federal, state, and local levels. The payoff has been phenomenal to date: substantial increases in federal research funding, growth in state-supported services, and improvements in the quality of care for those in nursing homes.

Every year, National Capital Area Chapter volunteers, like thousands of others in 600 communities across the country, participate in a Memory WalkT to raise funds to support services and programs for those battling the disease. These events have raised more than $175 million nationwide since 1989. The Chapter holds other special events throughout the year to support programs and services, including the Tour de Canal Bike Challenge, the Washington Monuments Luncheon, the BB&T Alzheimer’s Golf Tour, and the America’s Great Generations Gala.

Funding for critical research and improved care and diagnosis will help ensure that the rapid pace of scientific breakthroughs continues. In just the past 15 years, we have learned 95 percent of all we know about the disease. Federal funding for Alzheimer’s research will increase to $700 million in 2005, and the Association continues to advocate for a yearly commitment of $1 billion. Private donations have enabled us to award $165 million to over 1,300 important research projects worldwide.

For more information on Alzheimer’s disease and/or the Alzheimer’s Association, please visit www.alz.org or call toll-free 1-800-272-3900.

My mother was the type of person who remembered every birthday, every anniversary. I first noticed a change in her when she forgot my birthday. In 1974, she was diagnosed with a little known illness-Alzheimer’s disease. At the time, we did not have the benefit of the Alzheimer’s Association. This was the beginning of the seventeen year journey during which we watched my mother slip away.

During my mother’s illness, I gained a greater appreciation and respect for my father. He cared for my mother when she became ill. He took on household responsibilities that he normally would not have.

Early in my career as a teacher, I tried to relieve my father by caring for my mother on the weekends. Later, I took a year of leave. I sincerely wish I had known about the Alzheimer’s Association during this time.

My father was in his early eighties and still taking care of himself when he was diagnosed with Alzheimer’s disease. We were devastated. My younger sister, Verna, a state senator, had the wisdom to seek out the Alzheimer’s Association this time. Verna has become an advocate. Her lobbying efforts include increasing funding for research and education.

My personal advocacy work started when my sorority, Delta Sigma Theta, formed a nationwide partnership with the National Alzheimer’s Association to educate African Americans. I was amazed at how many of my sorority members had loved ones with this disease.

When our parents died, we wanted do all that we could to help other families cope with Alzheimer’s. At my mother’s funeral, we asked that in lieu of flowers a donation be given to the Alzheimer’s Association earmarked for education in the African American community. With those funds and the Alzheimer’s Association’s resources, the first Caregiver Conference was held. When our father died, we made the same request of our friends. With those funds and additional resources from the Alzheimer’s Association, the first annual Virginia I. and Pythias A. Jones Memory Loss Conference was held on November 19, 2005 at Coppin State University.

If your loved one would prefer a smaller, home-like environment, you should consider a residential home when researching for assisted living. Some of these smaller homes have unique specialties including, but not limited to, Alzheimer’s disease or related memory impairments, special dietary needs, and diabetic care. Many residential homes can also accept all levels of assistance, including hospice care, so that residents can remain in one place through their end of life stages. Please confirm the specialties and levels of care offered with individual assisted living residences.

Residents in these homes may enjoy participating in the preparation and serving of meals, housekeeping tasks, or gardening, plus a full array of fun activities, entertainment, and outings. Residents and families get to know each staff member well. The homes are usually nestled into neighborhoods, indistinguishable from surrounding properties.

Regulations governing these homes are the same as those covering larger facilities. A variety of agencies (county health department, social services, long-term care ombudsman) in most counties and cities provide significant monitoring of homes with four or more beds. As with all assisted living communities, it is important to visit the homes, ask lots of questions, and trust your instincts. A comprehensive guide to selecting a residence can be obtained through the Consumer Consortium on Assisted Living at www.ccal.org

Once the warning flags were raised, her decline seemed rapid and certain. Despite our efforts to control her medications, there were problems–sometimes too much, sometimes not at all. Over time, she began dressing in reverse layers, losing her balance, and falling more frequently. Then came the most frightening symptom: she began to wander out of her home, becoming lost and confused and escaping our search for frightening lengths of time. We were advised to think of finding a facility to provide her care.

One of our sources, the Alzheimer’s Association, was particularly helpful in providing support and information on alternative methods of care. The road to making that decision and the path that followed was riddled with many difficult situations. While everyone agreed that Mom needed help, there remained a great deal of controversy amongst family members. I learned that negative reactions toward the caregiver are not uncommon from those who are not directly involved in providing care, do not understand the need for an advanced directive or the responsibility it assigns, and/or do not understand the disease. I had to accept professional advice and move forward knowing that I was, in my opinion, doing what was in the best interest of my Mother.

Selecting the initial facility was the result of careful research and on-site tours. My sister and I toured many facilities using a 3-4 page form we had developed to help us note our first-hand observations related to staff/care providers, clinical practices, nutrition, hygiene, motivational activities, environment, privacy, and respect. Then, less than a year ago, I became aware of an assisted living facility being constructed near my home that would include an Alzheimer’s unit. I again did some in-depth research, made inquiries, and searched the internet. My brother and I invited other family members to join us on a tour with facility staff before deciding to relocate Mom.

My brother and I decided to make the move to Brightview of Catonsville about 6 months ago, knowing the transition would require an adjustment by our mother. I have only praise for what I’ve witnessed thus far. Staff have been sensitive, caring, attentive, and do what they can to motivate each resident according to his/her abilities. The director of the Wellspring unit is one of the most caring, patient, and gentle ladies I have ever met and is ideally suited to care for the elderly. During visits to see Mom, it is not unusual to see staff actively engaged in activities with the residents, speaking to them in a respectful and gentle way.

There is little doubt that the move to was a good choice. With the care she receives and the new medications, Mom has improved. I will always worry about her, but the care I’ve observed at Brightview has greatly reduced my level of concern. We can celebrate the fact that Mom will soon reach the golden age of 85 and continues do very well; she still has her sense of humor and still demonstrates that she’s a “take charge” lady.

Sincerely,
Connie Englehart