The sandwich generation's burden: Alzheimer's caregiving and family impact

¶ … Sandwich Generation, Caregiving, and Alzheimer's

Alzheimer's

The disease that all elderly people -- and their children, their grandchildren, their friends and neighbors -- dread nearly as much as cancer is Alzheimer's, and with good reason. "The worst part is the helplessness," said Sue Irvine, whose mother is an Alzheimer's patient. "You see a loved one struggling and unhappy, and there's nothing you can do. You can't even reason with them a lot of the time" (Laurant, 2009). In an article in the Lynchburg Virginia News & Advance, Irvine (who is now working for Generation Solutions, a home care service) said she, her husband, and their daughter Kenzie all were caregivers for her mother. But since Kenzie was the "last child still at home…she missed out on a lot because she had to spend time helping us help grandmother." While it was "rewarding" to be a helpful caregiver "It was also hard," Irvine admitted (Laurant, p. 1). It is "almost" like caring for a very young child, Irvine explained, and the Laurant article asserts"; few families have escaped this scourge."

What Is Alzheimer's? Why Does Alzheimer's Have No Cure?

According to an article in the Los Angeles Times (McDermott, 2007), an estimated 5 million Americans suffer from Alzheimer's and that number is growing "exponentially," McDermott writes. As healthcare solutions continue to help people live longer lives, the number of Alzheimer's patients will grow. And by next year, 2010, McDermott's research shows that caring for those with Alzheimer's will cost Medicare around $160 billion annually -- and by 2035, the cost to society of caring for Alzheimer's patients could be higher than the defense budget. Presently there are five medications that have been approved for treating Alzheimer's in the U.S. -- one which causes "severe problems" and hence is not often prescribed -- and four that "do nothing to stop the disease" and in fact have only "marginal, often transitory effects on its symptoms" (McDermott). The money spent on these medications that are often worthless is about $4 billion a year -- and in fact there are 56 more drugs in experimental trials that are supposedly regulated by the U.S. Food and Drug Administration. As to the future success of any of the 56 drugs presently going through trials, Neil Buckholtz (chief of the dementias of aging branch of the National Institute on Aging) said the process is "basically a 'throw the spaghetti against the wall' strategy" (McDermott).

Just how is Alzheimer's defined? McDermott writes that the answers to questions about Alzheimer's are "perplexing." In fact over 35,000 scientific papers have been published on the subject of Alzheimer's in the past 10 or so years. Notwithstanding all that research, "some rather obvious gaps" exist in the literature, McDermott continues. For example, one prominent hypothesis on the cause of Alzheimer's is the "amyloid hypothesis." In this theory, the disease occurs when there is an "overproduction, or inadequate clearance, in the brain of a protein called beta amyloid" (McDermott). When there is that overproduction of that protein, fragments of the protein "aggregate into clumps called plaques" -- and the first person to observe these "plaques" was Alois Alzheimer, over one hundred years ago, McDermott explains.

Scientists are not certain as to whether or not the plaques cause the disease, and they don't even know if the presence of amyloid plaques verifies the individual has the disease. Another hypothesis mentioned by McDermott is called the "tau hypothesis." This idea has it that the protein tau "aggregates into fibrous structures called tangles" inside the brain cells. While the amyloid protein tends to aggregate outside the brain cells, tau aggregates inside the brain cells, according to the science that McDermott has researched for his article.

Another big problem for scientists that are researching potential cures for Alzheimer's is that there are "no definitive physical markers" for patients living with Alzheimer's today. No blood sample or tissue sample can clearly identify that an individual has Alzheimer's, McDermott explains. The only way that doctors and other healthcare professionals can determine that a person has the disease is through the symptoms that a patient exhibits. Some of the research that has been completed is controversial. An example of a debatable research project: In 1992 David Bennett of the Rush Alzheimer's Disease Center in Chicago began a series of tests on 2,000 senior citizens; none of these people at that time had singes of dementia, considered a forerunner to Alzheimer's. All the participants agreed to allow their brains to undergo autopsy after they died.

According to McDermott's article, Bennett has (up until the time this article was published, 2007) examined 660 brains; about one-third of those brains show the person had "developed symptoms of dementia" and "more than 90%…bore the plaque/tangle hallmarks of the disease." But what was puzzling was that some of the participants who had shown symptoms of Alzheimer's did not have tau tangles or the beta amyloid plaques; and some who had no symptoms of Alzheimer's had the plaque or tangles. Clearly this research did not leave definitive answers for those studying the disease and trying to find a cure. Bennett's research was "deeply disturbing" according to Marcelle Morrison-Bogorad, associate director of the National Institute of Aging's Neuroscience and Neuropsychology of Aging Program.

"The distinction is getting fuzzier and fuzzier between normal aging and diseases like Alzheimer's… [which] brings into question of these people are normal or not. I don't think we can tell anymore who is normal" (McDermott). Morrison-Bogorad worries about the nebulous results of Alzheimer's research because "…We've been trying to reassure people who are older that small lapses in memory are part of normal aging" (McDermott).

Alzheimer's Symptoms -- What Are the Signs and Signals?

Joyce McLendon's husband Sam recently served as a Town Councilman in West Palm Beach Florida but today he is in an institution. Sam has Alzheimer's, and Joyce told journalist David Rogers (Palm Beach Daily News) that Sam began just being forgetful but soon he couldn't control the way he walked. On a boat trip to Mexico Sam told his daughters that the ride was bumpy because the boat was on "wheels" (Rogers, 2009). On the way home Sam "wandered off" at Los Angeles International Airport -- in his wheelchair. The symptoms begin, as noted earlier, with memory loss. Eventually the patient "loses all control" over his body, according to Harry Johns, president of the Alzheimer's Association. The patient often experience "agitation" as the disease takes hold and they are known to wander away from home and not be able to find their way back, Johns asserts (Rogers). Sometimes the patient turns violent and also he or she will "unintentionally steal items" at the nursing home or elsewhere.

What is the Sandwich Generation? What is the Sandwich Generation's Role?

Lunchmeat, cheese, bread and mayonnaise have nothing whatsoever to do with the so-called Sandwich Generation (SG), according to journalist Sarah Tindall. The SG is an age group that is "sandwiched" between caring for their own children, and caring for their aging adult parents. In fact November 2009, is "National Family Caregivers Month" in the U.S., a time during which the struggles of adults in the SG are being addressed (Tindall, 2009). Writing in the Corpus Christi Caller-Times in Texas Tindall explains that family caregivers in her part of the country provide "eight percent of the long-term care being given to those who can't care for themselves" (including of course those with Alzheimer's). Many of the caregiver families "feel overwhelmed by the emotional toll that caring for aging parents takes" (Tindall). The health of the caregiver is often compromised, Tindall continues. "You have to choose between the kids and the parents, and since the kids are more self-sufficient they end up on the minus side" (Tindall).

Christy Kruger writes for Inside Tucson Business and claims that 16 million Americans are now "sandwiched between two generations" (Kruger, 2009). Because of the recession many families have "stepped up to help" a loved one without turning to a paid professional healthcare service. For those families, "It is absolutely exhausting" and caregivers are known to get sick or hurt in the process of delivering the service.

Caregiving -- The Humane and Pragmatic Answer for Alzheimer's

"In the beginning, you think you can do it on your own," says Loraine Williams of Panama City Florida (Claunch, 2009). But she adds that Alzheimer's is a "long, drawn-out process" and some days you get up and say, "I can do this" but other days "you just can't. It's one day at a time," said Williams. The Williams were married fifty years and were together "every step of the way," according to an article in the News Herald. And Robert Williams was a healthy and active man who stayed fit, so the burden on Loraine was "an unusual experience for her" (Claunch). Indeed, as Robert's dive into Alzheimer's went deeper and deeper, Loraine became overwhelmed and struggled so hard that it was time to turn to the Center for Aging Respite Center in Panama City.

A driver came to the house and picked Robert up five days a week at 7:30 and brought him home at around 4:00 P.M. The couple received a grant from United Way to fund the service they received from the Respite Center, which cost around $200 per week. The Respite Center had well-thought-out activities designed for seniors with dementia and Alzheimer's, and those activities "helped slow down his Alzheimer's" (Claunch). Those activities include arts and crafts, chair aerobics, games, socializing, breakfast, lunch and a snack, Claunch explains. On many days a special visitor or group comes to entertain the seniors; among those groups are the Gulf Coast Women's Club, the Garden Club, PAWS Ministry, gospel groups, line dancers, pianists and sing-along singers.

When an Alzheimer's patient is stimulated (by being entertained, walking, or engaging in a game of some kind that challenges the mind but does in minimally) the nerve cells are "encouraged…to find alternative pathways around calcification, and hopefully slow down the disease's progression" (Claunch). Places like the Respite Center are clearly a huge positive boost for families whose loved one has been diagnosed with Alzheimer's. Respite Center director Gene Warner told the News Herald that "by 2020 there will be 5 million Americans suffering from Alzheimer's." And he added, "Even Nancy Reagan, with her financial and societal advantages, couldn't stop the slow progression of losing her husband."

Moreover, since there is no cure for Alzheimer's it portends the need for a lot of family caregiving over the next few years since the "Baby Boomers, the country's largest generation, is nearing the age of Alzheimer's and dementia onset -- around age 60," said Warner (Claunch). There is simply no doubt that the need for family caregiving will be on the rise as the Baby Boomers get up into their 70s and 80s.

Resources for Family Caregivers -- You Don't Have to Go It Alone

An article in the Grayson County News Gazette in Leitchfield, Kentucky offers a wealth of online resources for those families who may become (or already are) caregivers for their elder loved ones. Jim Miller, the author of this article, says there are approximately 52 million Americans today who serve as caregivers. He shares what he says are free Internet sites that are "particularly helpful" (Miller, 2009). Assist Guide Information Services (www.agis.com) offers home care help, daily living aids, "long-term care solutions, support services, legal and financial help and more," Miller writes.

The Assist Guide Information Services is a collaborative effort between AGIS and the National Family Caregivers Association. "Caregiving demands often intensify over time," the www.agis.com explains, and so the wise thing to do is to build a "caregiving team" (friends, family, and neighbors). But well before the loved one has moved into a physical or psychological position that requires assistance, the caregiver (or future caregiver) should talk to that person about his or her wished for future treatment and care, the AGIS site recommends.

Next, when it becomes clear that caregiving is going to be required, and once that team is assembled the next step is to "learn how to handle the intense emotions caregiving" brings to the table. Next, the caregiver should locate and gather all of that loved one's financial records, legal documents (powers of attorney) and other materials and keep those records in one place, perhaps in one folder. After that, the caregiver should "familiarize yourself with local services like "home care providers, geriatric care managers, adult day care programs" and other listings, all of which are provided by www.agis.com. A list of emergency contacts (services, doctors, neighbors, friends, and family) should be printed out and kept in the home and at the caregiver's workplace as well.

The AGIS site recommends the obvious, but important matters: a) "stay positive by actively seeking meaning in your struggles" and don't attempt to "disguise or deny negative feelings"; b) maintain close communication with other caregivers or friends in order to keep strong emotions from becoming "unmanageable"; c) since caregivers are "prone to depression" one should see a doctor in the event that feelings interfere with your work or everyday life.

If a caregiver should become isolated, it is critical then to "reach out for emotional support" by getting in touch with a "caregiving buddy" or a "caregiver's support group" (www.agis.com). The AGIS site suggests keeping a journal to help keep things in perspective. And if things become burdensome and out of control, therapy or counseling "can be a smart investment." The kind of depression that can result from the burden of serious caregiving is worse than "ordinary sadness" and if left "unchecked it can leave you unable to care for your loved one or yourself" (AGIS). A good phrase to remember is this: "You may not be able to choose what happens to you and your family, but you can choose how you respond," the AGIS site explains.

Other online resources include: a) www.caring.com ("Tons of practical information, articles…and links"); b) The Family Caregiver Alliance has a "broad range of services in all 50 states (www.caregiver.org); c) AARP (www.aarp.org) offers a "Care Giving Tool Kit; and d) Strength for Caring is Johnson & Johnson site that offers tips on fitness and nutrition for caregivers (www.strengthforcaring.com).