This article appeared in the Oct. 27, 2006 Jewish Advocate.
Alzheimer's Disease impacts care providers, patients
By Susie Davidson
Advocate Correspondent
Alzheimer's, she explains, is not really a disease in itself, but rather a group of symptoms that may accompany certain diseases. There are many "dementing disorders," she said.
About.com's guide to Alzheimer's, written by Christine Kennard, cites vascular, sometimes known as multi-infarct, dementia. This is a blood flow-related disorder that may follow a stroke, and tends to progress far more rapidly than does Alzheimer's disease. It also has its own complexities. "Areas of the brain not affected by the stroke tend to remain unaffected," writes Kennard, "and this contrasts with the more general deficiencies that accompany Alzheimer's." Further, Alzheimer's disease does not preclude one from also having vascular dementia.
The Cleveland Clinic's Health Information Center lists the most common causes of dementia as degenerative neurological diseases such as Alzheimer's and two conditions often mistakenly diagnosed as Alzheimer's in the past, "Lewy body" disease and Pick's disease (which is less common, and affects the frontal and temporal lobes of the brain), as well as Parkinson's, and Huntington's diseases. Next are the vascular disorders, and then, infections that affect the central nervous system, such as HIV dementia complex and Creutzfeldt-Jakob disease (which has been shown to be more prevalent in the Jewish population).
Chronic drug use and depression follow, along with certain types of hydrocephalus, an accumulation of fluid in the brain resulting from developmental abnormalities, infections, injury, or brain tumors.
But Alzheimer's disease, which causes 50 to 70 present of all cases, remains the most common form of dementia, and a very cruel affliction as well. "It's progressive and degenerative, and attacks the brain," says Lewin. Although AD mimics some normal age related brain changes, "it is not a normal part of the aging process," she states. "It causes nerve cell injury and death and is characterized by the build-up of senile plaques (protein deposits between cells) and neurofibrillary tangles (twisted protein filaments within nerve cells) in the brain. Over time, AD, which can only be truly diagnosed through an autopsy, results in a communicative decrease with different areas of the brain." But it is also very individualized, says Lewin. No case is different.
Research into causative factors is murky. Kennard writes that while most scientists believe that Alzheimer's disease begins with the buildup of beta amyloid protein in the brain, there are a number of theories about why this should happen.
The disease is not, thus far, especially linked to familial incidence, as this factor accounts for only 5 to 10 percent of all AD cases. AD risk does seem to vary by ethnicity, with the incidence in Americans of African descent as much as four times, and in Hispanics, up to two times, greater than that in Caucasians. AD risk does increase with age, from a 10 to 12 percent incidence in those over 65 years of age to 50 percent for those who reach 100. Given that the population of the U.S. is living longer, Lewin relates an estimate of as many as 9 million Americans having the disease by the year 2050.
But into that figure must also go untold, affected others who are often completely unprepared for the challenges ahead. "In my wildest dreams I never thought I would be a caregiver for my mother," says Ellen B. of Brookline, a former executive whose mother, diagnosed with AD several years ago, is now a resident at a local healthcare facility. "I was thrust into the role of caregiving with no pre-planning," she says. Ellen was able to turn some of the sacrifices into personal gains. "I looked at this new role in my life as a privilege, and tried to carry on my life as best I could," she recalled. Her mother became her sidekick, accompanying her wherever she went. A very social person, Ellen experienced a mixed reaction. "Most of my friends were understanding; however, others gave me a lot of grief," she says. But she had to do what she felt was right.
Dr. E., a MetroWest resident whose wife has been living with Alzheimer's for three years, remains the major caregiver. "Initially, she had memory loss and was in a confused state, with a lack of awareness and time recognition," he said. His wife's symptoms have increased markedly over the past nine months. A former internist at a Harvard-affiliated teaching hospital, Dr. E. diagnosed his wife himself, but she was also seen by a gerontologist as well as her primary care physician.
"This disease in particular impacts the family perhaps more than any other," he says. "It's like living in a desert," he explains. "There is no real communication. You can't share all the things you've shared for half a century, there is no talking about news articles, or going to a movie." Outside the home, things change as well. "Many of your friends withdraw," he said, "not because they aren't caring, but because they can't deal with it. This is true sometimes of even close relatives." There is thus a loss of social contact
as well as intellectual interaction. Travel is totally out of the question. "At my age, I can't commit to a lot of outside activities anyway," he said. "But one of the things I would normally look forward to is being in the predictable comfort of my own home."
Despite the challenges, most people choose to care for their loved ones at home. An article by Barbara Basler from the Sept. 2005 AARP Bulletin quotes Kathleen O'Brien, vice president of program and community services for the Chicago-based Alzheimer's Association: "Ten to 15 years ago these people were institutionalized, and their care involved physical or chemical restraints, [but] today, more than 70 percent of those with Alzheimer's are cared for in the family home, and we talk about controlling the disease and enhancing daily life for those who have it."
"While some families have lots of support in dealing with this insidious disease, other caregivers are left to fend for themselves," added Ellen, who strongly suggested talking with other caregivers to express feelings and frustrations. "If it is not easy to attend a support group, find a 'buddy' caregiver who can understand what you are going through on a daily basis," she said. Support groups are usually advertised in local listings: in Brookline, two monthly caregivers' support groups meet at the Senior Center.
Ellen was fortunate in that she found another daughter who was taking careof her mother full-time. "We were there for one another," she said. "I also have many long-time friends around the country who are in caregiving roles, and we support one another via the internet." She said that most family members don't have a clue what the days are like, nor do they really want to know. "People often seem to ask how the Alzheimer patient is but not how the caregiver is," she said. "The caregivers are victims of this insidious disease too."
The fundamental issue, agreed Dr. E., is not the disease, because one can usually bring in people who are trained. "When it comes to the actual day-to-day care," he said, "it is all on the shoulders of the caregiver." Dr. E. has a woman come in for three hours twice a week to help out. "Most people involved do worry more about me than they do about her at this point," he remarked. One of the crucial issues, he said, is to decide how long the caregiver can deal with the situation effectively, without inordinate personal detriment.
Dr. E. is often up three or four times a night. "We will sit at the kitchen table having chocolate milk at 3 in the morning, because she has no awareness of time," he said. Indeed, his wife's concept of a 24-hour day is sleeping during the afternoon, and being up and walking around after midnight.
Yet he, like Ellen, finds a positive aspect. "There is a tremendous amount of gratification to be gained from taking care of someone you love, like with a child," he said. "They have to be fed and clothed and cleaned. You become a caregiver of another sort." Certainly this exemplifies some similarities between the beginning and the end of life.
The Alzheimer's Association, which has 80 nationwide chapters, has been in existence since 1980. It is the largest nonprofit organization dedicated to supporting families and professionals and to finding treatments and a cure for the disease. The Association, which helps educate the public and publishes an online guide of research trials in Massachusetts, is the largest private investor in Alzheimer's research and has its own scientific program. In
addition to Watertown, there are offices in Lowell, Sandwich, Springfield and Worcester. Care consultation, family education and caregiver programs, and education for physician and health professionals are offered, as well as early stage programs and consumer guides on family care and living facilities. The Association assists 150 statewide support groups, operates a Safe Return program in conjunction with police, fire and search and rescue personnel, and advocates for state and federal public policy efforts. Its Helpline, which
can translate information into 100 languages, is 800-272-3900.
The CJP's "Senior Direct", located at cjpseniordirect.org and accessible at 1-800-980-1982, lists resources for the senior community. Organizations such as Senior Housing Net can provide specific help in the search for assisted living communities and nursing homes that specialize in Alzheimer's care. In addition to helping with daily needs, they provide an anxiety-relieving environment that caters to individuals' own skills and interests. Some even incorporate special building design features such as color-coded hallways, visual aids and secure wandering pathways.
Local Alzheimer's living facilities include Neville Place in Cambridge, New Horizons at Choate in Woburn, the Falls at Cordingly Dam in Newton, Concord Park in West Concord, Standish Village on Adams Street in Boston, the Village at Willow Crossings in Mansfield, and Woodbridge Assisted Living in Peabody.
Woodbridge, a center of the Jewish Rehabilitiation Center of the North Shore (which also operates the Shapiro-Rudolph Adult Day Center in Swampscott), is a Kosher facility located on a wooded knoll in Peabody. The center opened in 1997, and offers 130 private rental apartments for seniors. Harriet Flashenberg, LSW, Director of Marketing, talked about Woodbridge's new Legacy Program, which is a special-care unit for Alzheimer's and related dementias that will open this November.
"The Legacy Program, which employs staff, consultants and experts in the field, will add two 16-apartment 'neighborhoods'", she explained. "The goal is to create an environment that will be life-enhancing, and will provide meaningful programming at a standard our own family, friends and colleagues can embrace."
Legacy will offer assistance with personal hygiene/grooming/bathing/ dressing, medication and continence management, and limited medication administration from 8 a.m. to 8 p.m. Design features will include a therapeutic garden and a front porch, specifically-designed closets, and interiors with visual cueing, and night-lighting.
In a letter to JRC CEO Steve Roizen, Alzheimer's Association's Director of Patient Care and Family Support Paul Raia, Ph.D., praised the innovations. "The front porch idea conveys the feeling that residents are entering into a home, the universal archetype for safety, belonging, and family," he wrote. "Once in the home, the residents will be in a kitchen, again conveying the feeling of relationships and sharing, and a living room, where people who care about each other socialize," he said, noting that these feelings are crucial, because they are often the last capacities to be lost with AD.
Raia lauded other design features, such as color cueing, shadow boxes, object salience, lighting, camouflage and a distraction-free atmosphere. "These.create what I call 'a prosthetic environment' that increases independence and promotes positive emotion, and in combination with other evidence-based care practices, slows cognitive decline and avoids many psychiatric symptoms previously thought to be outside our control," he said.
Woodbridge Executive Director Katy Tavares, who has managed Assisted Living communities for the past 13 years, said that families of Woodbridge residents who will be transferring to the Legacy program have expressed gratitude for the opportunity for their loved ones to continue in the facility's comforting environment. "I have never seen an organization so committed to the success of the day-to-day operations of its communities," she said. "The Legacy program is well-designed and well-staffed, and has a more than adequate budget to meet the diverse challenges of those with memory loss."
Lewin likes Epoch, at Chestnut Hill and in other locations, which has a "Bridges Memory Care" program of separate neighborhoods with special safety features that help promote memory stimulation. For those with moderate dementia, Epoch offers a day program of continuous activity, exercise and nutritious meals called "The Club". "They keep them busy," said Lewin, "and they sleep better at night. This is unique."
"It is important to have a facility picked out before a crisis arises," cautions Ellen, who suggests looking at many and narrowing the choices to three. "File applications with all of them," she advises, as one doesn't know which facility will have an opening when needed. "After my mother was hospitalized, I came to the realization I could no longer care for her at home," she recalled. "I already had a rapport established with several nursing homes, so it was easier to get the placement of my choice when she was released from the hospital." Ellen said that it is important to have the facility close by. "It is important to visit often, as you really become the patient's advocate," she said. She thought it would be somewhat easier once her mother was placed in a facility, but she was surprised to find that it actually became much harder. "Every time I visit my mother, it is emotionally draining,"
she says. "I didn't realize how much caregiving took out of me, and I find I now need time for me." Even with her mother in a facility, her caregiver responsibilities do not stop. "It is now even more important to take care of myself, making sure I eat properly and get exercise," she said. It is also important to know what the signs of caregiver stress are, she added, and to not be afraid to discuss them with one's doctor.
Caregivers draw upon many individual resources, even some that they may not have been previously aware of. "One of the factors that contributed to my being a good caregiver for my mother was my experience in the corporate world," said Ellen. "I never knew what crisis I would be faced with on any given day. Thus, having handled many critical, time-sensitive situations in that setting, I was able to deal with the crisis at hand." Ellen's corporate experience also helped her design structured days for her mother, which was so important. "The role of caregiver was harder than working in the corporate world," she said.
"I started the home care program at my hospital over 50 years ago," agrees Dr. E., "and it was one of the first times that I as a doctor went to a home with a nurse." He would sometimes bring residents with him as well. "They were amazed to see to what degree caregiving affects others at home," he said.
"The question is, how long do you carry on?" he asked. "You can get all kinds of different opinions, depending on who you speak to - a Rabbi, a doctor, a friend." Whether or not you can last usually depend on the patient and the care, he said.
Lewin also believes that care is critical. "We encourage our clients to be proactive," she said. "As soon as the individual or the family member feels that there is something dramatically different, go to the primary care physician." He or she will then recommend a neuro-psychological evaluation to establish a baseline, or any impairment that is going on, she said, and might also prescribe medication that may arrest or postpone, or even restore some memory function (some medications are geared to the very beginning, and some to the very end). "They will then have a baseline by which to compare future testing," said Lewin.
She noted that it is encouraging that people go to the doctor more frequently now. "In the old days, people put it off," she said. "But the baby boom generation is insisting that their parents go, and don't put it off. We are such a proactive generation - and we are the caregivers," she added.
Lewin said that new meds are helping, and new technologies are on the horizon. “We live in a city with such incredible resources, and rigorous, psychological, physiological and medical testing," she said. "You've got Faulkner, the BI, Mass General and many other great geriatric practices where evaluating older people is all that they do."
As far as gingko and other talked-about natural remedies, Lewin advised caution. "You get into this homeopathic stuff, you must talk to your physicians," she stressed, noting that counterindications and side effects could occur.
While an overview of AD may appear to be quite foreboding, there are bright
factors, says Lewin. "Although we are seeing more and more people with some type of cognitive deterioration in our practice, which is usually Alzheimer's," she said, "it is important to remember that people do not get Alzheimer's simply because they live longer today. Aging does not necessarily mean loss of memory."
This may appear to contrast with the fact that the risk for Alzheimer's increases with age, but Betsy Percoski, the Senior Director of Public Affairs for the Alzheimer's Association, concurs. "Currently, Alzheimer's disease affects about half of those over age 85, but we are hopeful that in the next decade research will begin to yield treatments that may delay the onset of the disease," she said. "In the meantime, we encourage everyone to maintain a healthy lifestyle and keep physically and mentally active, and make the most of life."