July 2012 Newsletter

Bad behavior of Alzheimer’s patients is a sign of unmet needs

In the first part of a multi-part post, Angela Lunde breaks down the negative behaviors displayed by some patients with Alzheimer’s disease.  Her mantra is “Blame the disease, not the person,” but she says we should not simply dismiss or blame the behaviors on the dementia.  Lunde, the chief writer for the Mayo Clinic’s Alzheimer’s blog and a dementia education specialist in the education core of Mayo Clinic’s Alzheimer’s Disease Research Center at the Abigail Van Buren Alzheimer’s Disease Research Clinic, wrote that when a patient displays negative behaviors, the patient is telling you that they need something.  As Alzheimer’s progresses, it takes a toll from the patient in the form that the person can no longer verbally communicate.  What the patient is trying to do through their bad behavior is communicate their needs to you, Lunde says.  The writer talks about basic and higher order needs, writing that much of human behavior is motivated by specific needs that have to be met.  To help meet those needs, caregivers should change their way of thinking and view their loved one’s behavior as neither bad or good.  Instead, we should just accept the behavior as a bold sign that there is an unmet need that requires attention.  By paying attention to the behaviors, Lunde said family caregivers should try to investigate the conduct to figure out the unmet need.  When compared to paid help, family caregivers have an edge because they are more than familiar with their loved one.  However, since family members have trouble letting go of the person as they once were, that familiarity may not help them find the unmet need, Lunde wrote.  In her next post, the writer promises to offer more insights, specific techniques, and strategies for uncovering the message behind the behavior.

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Discovery of rare gene variant may give AD researchers a clearer objective

While studying genes that increase a person’s likelihood of developing Alzheimer’s disease, researchers identified a gene variant that may offer some form of protection from the disease.  In an article for TIME, reporter Alice Park writes that the discovery of the variant form of a gene called APP could give the Alzheimer’s research community a better target to shoot for in the fight against the disease.  The discovery of the variant supports the theory that the build up of the beta amyloid protein causes Alzheimer’s disease.  It also provides some hope of a potential treatment that could slow the progression of the condition or prevent it entirely.  Kari Stefansson, founder of deCODE Genetics in Iceland, and his colleagues, found the APP variant after scanning the entire genome sequence data of 1,795 Icelanders.  The researchers looked for protective variants of APP and found one mutation in only about 0.45 percent of people in Iceland, Park wrote.  In people over age 85, about 0.13 percent of people with Alzheimer’s had the variant, compared with 0.62 percent of people with normal cognition.  For caregivers, the discovery of the variant may not be that exciting, but the research community’s enthusiasm stems from the inspiration that scientists are on the right track to discovering new treatment strategies for Alzheimer’s.  While researchers continue to pinpoint the role of beta amyloid in Alzheimer’s disease, they are beginning to believe that beta amyloid plays a critical role in the acceleration of Alzheimer’s.  Conclusions from recent studies suggest that the problem may lie not with overproduction of the protein, but with a failure in the brain’s ability to clear it away efficiently, Park wrote.  Therefore, the objective for the Alzheimer’s research community may be to devise strategies that reduce the levels of beta amyloid in the brain.

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Researching and questioning home care agencies can reduce the hardships

Caregiving is more of a delicate balance for family members who work, have children or live great distances away from their loved ones.  No one wants to do it, but hiring paid help can remove some of the pressure from a stressed-out family caregiver.  While hiring a paid caregiver has its benefits, families seeking such services should do their due diligence by thoroughly investigating and questioning any potential agency and its employees, according to the results of a new study.  Judith Graham, writing for The New York Times’ “The New Old Age” blog, reports on the study and poses a series of questions consumers should ask if they are looking for outside assistance.  Researchers, from Northwestern University’s Feinberg School of Medicine, played the role of family members when they interviewed 180 agencies in Arizona, California, Colorado, Florida, Illinois, Indiana, and Wisconsin.  They asked questions about the agencies’ hiring practices, training, and supervision of its employees.  The study’s findings showed that some agencies were just interested in making money and some of their paid caregivers you would not want taking care of anyone you know, said Dr. Lee Ann Lindquist, an associate professor of medicine at Northwestern and the study’s lead author.  The study found that more than 50 percent of the agencies relied on caregivers’ own assessment of their skills, none of the agencies tested potential caregivers on their ability to understand medical terms and instructions, and that only 16.5 percent of agencies tested caregivers about the employment and its requirements.  In addition, none of the agencies ran background checks on applicants in other states, only 32 percent of the agencies performed drug tests on applicants, and only 23 percent of the agencies provided supervision by sending someone to check on the caregivers’ work.  Graham summarized the home care industry as a fast-growing, almost entirely unregulated business that serves frail seniors with remarkably little oversight or meaningful consumer protection.  After learning of the study’s results, hiring someone might be the furthest thing from your mind, but it may still offer one of the best solutions for many families.  Lindquist suggests family members ask questions to help select a reputable agency with qualified employees.  She says family members should ask about the agencies’ recruiting and screening process, background checks, hiring requirements, health-care training, and the abilities and skills of staff members.  Those questions will help whittle down the agencies to qualified ones.  In addition, Lindquist writes that consumers will receive additional protections if the agency is Medicare-certified or licensed by a state.

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Recognizing a need and achieving the solution

After Wendell Nickell took on the responsibility of serving as his wife’s primary caregiver, he realized it was a demanding duty.  When he needed a respite as his wife, Waitstill, progressed deeper into the stages of Alzheimer’s disease, he discovered the help he needed was not available in his community.  In his quest to find a solution, he found people in similar situations and established a facility that eventually became the Sunflower Adult Day Services, reported Gordon D. Fiedler Jr., a writer for the Salina Journal.  Nickell and his partners found a former funeral home owned by the Catholic Diocese of Salina and opened their organization in 2005.  He had used adult day care facilities while traveling with Waitstill in Arizona.  During his travels, he learned there were not many facilities that care for adult patients with dementia across the U.S.  In Nickell’s area of Kansas, there were no other types of facilities available outside of nursing homes, Fiedler wrote.  Currently, the Sunflower Adult Day Services caters to about 20 patients a day.  The manager, Mary Sue Wells, says the facility does more than just care for Alzheimer’s and patients with other forms of dementia.  Sunflower Adult Day Services is set up to work with strokes and other chronic diseases that make it hard for patients to be alone, she said.  Costs to use the services vary and depend on the levels of care and length of stay.  While Medicare does not cover its fees, Medicaid and the Veterans Administration will cover the costs.  Unfortunately for Waitstill, as the facility became a reality, she progressed to the latter stages of Alzheimer’s and never got to use it.  For his hard work and inspiration, the Saline County Commission on Aging honored Nickell and made him a member emeritus of the board.  Patients who use Sunflower Adult Day Services can participate in a variety of activities, including art projects, games, and field trips.  It gives caregivers respite and gives patients some fun, Nickell said.  I am proud of what we have accomplished, he said.

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Suggestions to make bath time an easy part of the routine

When caring for a loved one with Alzheimer’s disease, having them do something like eating, dressing or bathing might not agree with their sense of what they want to do.  Finding a period of the day when your loved one seems most agreeable to bathe would be an ideal time to make it part of the routine.  Columnist Gary Joseph LeBlanc always advises his readers to stick to a routine when caring for a loved one with Alzheimer’s or other forms of dementia.  LeBlanc, who writes a weekly column called “Common Sense Caregiving,” says that is especially true when it comes to bath time.  The writer served as his father’s primary caregiver for nearly 10 years.  He knew his father’s habits and referred to it as a strict routine.  First, his dad ate breakfast, then shaved and showered, he wrote.  LeBlanc offers some suggestions to help make washing easier for both the patient and the caregiver.  He recommends always trying to have the same person, whenever possible, help the loved one bathe.  Other good ideas are to have all items laid out ahead of time and that the use of the same products can be beneficial.  Moreover, while it should go without saying, it still bears repeating: Never leave the patient alone.  LeBlanc also addresses privacy and how often the patient should bathe.  He recommends placing a large towel or robe over their shoulders and another one over their lap, and washing under the towel.  To help preserve your loved one’s dignity, LeBlanc says you should never tell your loved one they stink!  Unless the patient is incontinent, bathing two or three times a week should be sufficient.  If your patient refuses to bathe, the columnist recommends caregivers not push the issue.  Caregivers must be flexible and their results might be different if they try an hour later, LeBlanc wrote.

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Add an elder care category to your financial plan

With people living longer, Scott Holsopple says we need to prepare ourselves for future medical needs.  Most people design their financial plans to cover the usual items: retirement planning, estate planning, debt reduction, and budgeting.  However, Holsopple, the president and CEO of Smart401k, writes that we should add a new category to cover planning for elder care.  Writing in U.S. News & World Report, Holsopple says that when planning for elder care, the focus is on living to an advanced age.  A set of objectives and a strategy for achieving them should be a part of each element of your financial plan, he wrote.  Living expenses, Medicare, Medicaid, long-term care insurance, and power-of-attorney documents are some of the items you should include within the elder care category.  Holsopple, who provides advice to the everyday investor, says retirees may want, or need, to work as a part-time consultant, sales associate or try a new profession in another career field to cover living expenses.  In addition, elderly investors need to stay up-to-date with changes in Medicare and check their state for current laws governing Medicaid, which regulates nursing homes stays, he wrote.  Holsopple believes that financial planning calls for the investor to do some research on his or her own.  He says if the research becomes too much, the next course of action may be to hire an elder care attorney.  As a final thought, Holsopple writes that it is never too late to create an elder care plan.

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