It is so surprising, but it is almost inevitable.  Chuck Gomez wrote that he would never forget the moment when he realized his mother no longer knew who he was.  Gomez, a playwright and former Emmy Award-winning television news journalist, called that event a devastating reality.  While he knows it is bound to happen to every child of a parent with Alzheimer’s, he could not believe that it was happening to him.  His mother, Angelina, is 89 years old and is battling Alzheimer’s disease.  He realized his mother no longer recognized him three years ago on Christmas Eve.  Gomez and Angelina were sitting together watching TV while his father served as an usher during the midnight mass at a local Catholic church.  While watching a movie on TV, his mother turned to him and asked: “Excuse me, where is your mother?”  Although her smile was friendly, he noticed his mother looked confused and eyes were vacant.  The family first noticed her symptoms nine years ago.  She handled the family finances and suddenly stopped paying bills.  She was never even a day late, her husband said.  Then I started getting letters from the bill collectors, he said.  Before her symptoms became apparent, she would call Gomez weekly.  That abruptly stopped around the same time they received the collection notices.  Gomez’ dad is Angelina’s primary caregiver, so she is usually at home.  With Mother’s Day approaching, Gomez is reminded again of how Alzheimer’s disease has ravaged his mother, the woman he always put on a pedestal, he wrote.  While she no longer recognizes him or his brother, Gomez shares some cherished memories that detail his mother’s love for her sons.  He also relates some poignant reminiscences of happier times while Angelina is in the midst of combating Alzheimer’s.  After his mother asked who he was, Gomez told the story to his mother’s caretaker, Nancy. Nancy looked at me and pointed to her head, Gomez wrote.  She may not know here, Nancy said, but she definitely knows here.  And then she pointed to her heart.

Read the complete article by clicking here

HHS Secretary Sebelius: Dragging Alzheimer’s disease out of the shadows

The federal government did not fund or pay a lot of attention to Alzheimer’s disease since it was generally associated with the process of aging, said Kathleen Sebelius, Secretary of the Department of Health and Human Services (HHS).  Sebelius made those remarks during the 2012 Alzheimer’s Association Advocacy Forum, which is billed as the nation’s largest gathering of Alzheimer’s advocates.  She began her speech by saying what researchers know about Alzheimer’s, including that the first symptoms are minor and then the condition gets progressively worse.  She also said that it is one of the leading causes of death in the U.S. and that Alzheimer’s is irreversible.  Then, Sebelius went on to say what scientists do not know, which is how to stop Alzheimer’s.  Without the necessary support from the government, she spoke of the burden placed on families who are doing all they can to assist their loved ones and the costs that Alzheimer’s care places on our economy.  Sebelius also talked about the Alzheimer’s Association advocacy efforts and how its work is making a difference.  Some of the current barriers standing in the way of progress, include the public’s, and even the medical community’s, lack of knowledge about Alzheimer’s combined with the research community’s absence of clear goals to track progress, she said.  Now, moving Alzheimer’s disease out of the shadows and making it a national priority is the goal of the Obama administration, Sebelius said.  She then discussed the National Alzheimer’s Project Act, which was signed into law on January 4, 2011 by President Barack Obama.  The act established the National Alzheimer’s Project that has five goals.  The first goal of the project is to prevent and effectively treat Alzheimer’s disease by 2025.  She reiterated the news from February that the Obama Administration requested a $156 million increase in funding for Alzheimer’s research over the next two years.  After listening to feedback from the Association, the administration plans on increasing its focus on health care providers to give added assistance to families needing help.  Sending additional funds to geriatric education centers, engaging in building a partnership among government, advocates, providers and the public, and making a 15-year commitment for the prevention and treatment of Alzheimer’s are some of the actions made by the administration.  The changes made by the administration include lifting the ban on embryonic stem cell research and passing the Affordable Care Act.  Sebelius said there is a still a lot of work to do, but they have found the resources, energy, and focus to bring Alzheimer’s out of the shadows.  In the work to end the suffering of Alzheimer’s, the Obama Administration is your partner, and we are in it for the long haul, she said.

Read the complete article by clicking here

Support groups’ attendance suffers due to stigma associated with Alzheimer’s

When only one person attended the first of a three-part series for caregivers of patients with Alzheimer’s disease, the facilitators thought the stigma associated with the condition might be the culprit.  The Westview Care Center in Britt, Iowa, is the sponsor of the series that is designed to offer help to caregivers and their patients with Alzheimer’s, wrote Caitlin Hamilton, a writer for the Britt News Tribune.  The center has a support group for Alzheimer’s caregivers and also offers respite care for loved ones with Alzheimer’s.  In years past, I have had great numbers, but it has dwindled down, said Jamey Cassels, a social worker at Westview.  As a means to promote its services, Cassels and Westview marketing specialist Angie Wirth started the support group more than 10 years ago.  We are trying to get the word out and get people to understand they can get together and talk to each other and support each other, Wirth said.  You can find a wealth of knowledge about Alzheimer’s disease on online blogs, videos, in written materials, and a number of other mediums.  However, Alzheimer’s affects each patient differently so you cannot apply a template to your loved one.  Embarrassment, denial, lack of awareness, and the assumption that it is just a part of growing older are some of the reasons people do not admit their loved one has Alzheimer’s and will not attend a support group.  Cassels said some families are very private about it or are in denial about it.  It is not a pretty disease, she said.  To attract a larger audience, the organizers changed the meeting place and time.  The group now meets at the United Methodist Church on the second Wednesday of each month from 4 to 5 p.m.  When I have had six or eight people, they are such a good support to each other, Cassels said.  Alzheimer’s is so overwhelming and the need for a support group is so big, she said.

Read the complete article by clicking here

After diagnosis, Alzheimer’s caregivers may endure five stages of grief

Marie Marley, a caregiver, author and a blogger for The Huffington Post, uses her experience caring for her soul mate, Ed, to formulate five different stages of grief for families with a loved one with Alzheimer’s.  First, she addresses grief over the loss of the “Previous Person.”  As the cognitive function of the patient begins to diminish, that person starts to fade away, resulting in feelings of loss and despair, Marley wrote.  The loss of the person is evident when they are unable to hold meaningful conversations, begin to display negative personality changes, and can no longer recognize family and friends.  This stage of grief is constant as the condition progresses.  It seems that every time a caregiver is able to come to terms with the person’s reduced level of functioning, they get even worse, Marley wrote.  To manage this stage of grief, Marley says caregivers need to let go of the “previous person” and learn to love the new person.  Her next stage of grief involves anticipatory grief, which occurs when someone expects a person to die.  To help control this kind of grief, the writer states that caregivers should try to shift the focus from the anticipated death of the person to spending the remaining time together in a joyful way.  After the person dies, it leads to the third stage of grief.  This stage of grief is more difficult than other phases of deaths because the caregiver has been grieving the loss of the loved one for years.  In this stage, the caregiver experiences the normal stages of grief.  Some people may get stuck in one of the stages, which leads to complicated grief, the fourth stage of grief.  Complicated grief is also called unresolved grief because it does not diminish with time.  Also, it might become so intense that it interferes with a person’s life.  Marley’s advice is to seek the professional help of a physician, a psychotherapist or both to move past this stage of grief.  Moving on is the fifth stage of grief that Marley discusses.  This occurs after a caregiver fully experiences the grieving process.  To move on, caregivers need to give themselves the time to grieve.  During this period, they should take care of themselves physically and emotionally.  Returning to an old hobby or getting a new one, and visiting with family and friends are some ways to occupy your time.  With time, your pain will lessen and you will be able to move on, Marley wrote.

Read the complete article by clicking here

Social media Web site allows families to join forces to manage a loved one’s care

With families spread across the country, some members may not have much knowledge about a relative living with Alzheimer’s disease.  A Web site established by BrightStar Care allows users to employ social media techniques to keep family and friends connected and up-to-date about their loved one’s condition.  The Web site, called CareTogether, provides caregivers with the support they need to carry out their responsibilities to their patients.  The idea of CareTogether is to create an online community that helps the family caregiver better manage and coordinate care.  Instead of the primary caregiver doing everything for the loved one, CareTogether delivers the opportunity for family members and friends to pitch in and collaborate on the loved one’s care.  Once you sign into the site, users create a personalized profile that features their loved one.  With security measures in place, users grant permission to the people they want to access the site.  On the profile page, only family members and friends can post updates and share pictures of your loved one.  The site also features tools and resources to keep everyone informed and updated.  One notable feature is the CareTogether calendar.  It shows the important tasks and upcoming medical appointments.  The calendar also links to a task list that allows users to assign different tasks to various members of the care team.  Some of the resources include eBooks and online forums that offer additional help and support.  CareTogether was designed to seamlessly integrate with other popular social media sites.  It also supports access from many mobile devices.  The site is available to anyone for free.  Making more possible for families who need caregiving support is our goal, and that is the beauty of CareTogether, said Shelly Sun, a BrightStar Care co-founder and chief executive officer.

Read the complete article by clicking here

A nursing home that emphasizes normal life for patients with dementia

A new living experience for people with dementia in the Netherlands is attracting worldwide attention.  Staff members describe the Hogewey complex as a new type of nursing home.  While the complex does not look much different from other typical residential developments in the same vicinity, that is exactly the point, writes John Tagliabue, a writer for The New York Times.  The Hogewey is a 23-unit complex in Weesp designed for older men and women in the latter stages of dementia.  It is the result of an attempt to contain the runaway costs of health care and provide a communal environment where six to eight residents live in each apartment.  A small supermarket, theater, restaurant, and café are included among the amenities.  The Hogewey has 240 staff members.  Two or more employees care for the residents in each apartment.  The residents are confined to Hogewey for their own safety, but within the complex they are allowed to move around freely, Tagliabue wrote.  Jannette Spiering, the director of Hogewey, and her colleagues based the facility on the concept that patients would suffer less stress if they were in more familiar surroundings and kept as active as their condition allowed.  Unlike other nursing homes, the staff urges the residents to help with the cooking, with the laundry or with one another, Tagliabue wrote.  Since the supermarket is contained in the complex, they included shopping as part of the residents’ daily routine.  If you are demented, it is great if you can help other people, said Dr. Anneke van der Plaats, a geriatrician and adviser to Hogewey.  A demented person doesn’t have to sit alone, she said.

Read the complete article by clicking here

The lack of necessary funding to conduct research to find a cure for Alzheimer’s disease is generally cited as one of the triggers for the impending Alzheimer’s epidemic. Earlier this month, the Department of Health and Human Services announced that the Obama Administration requested a $156 million increase in funding for Alzheimer’s research over the next two years. Alan Silverleib, a reporter for CNN, writes that the funding will support basic and clinical research designed to improve therapy and identify genes associated with a heightened risk of the disease. Under the request, the National Institutes of Health will shift another $50 million in funding to Alzheimer’s research for this year. In addition, the White House will call for another $80 million in funding as part of a proposal for the 2013 fiscal budget. The administration acknowledges that patients with Alzheimer’s disease and their caregivers need help now. Beginning next year, the remaining $26 million will go toward meeting the needs of those affected by Alzheimer’s through a variety of programs, including caregiver support, education, and public awareness. The funding for the proposal comes as part of President Obama’s “We Can’t Wait” initiative, his bid to bypass the Congressional gridlock of Washington and get something accomplished.

Update: On Wednesday, February 22, the U.S. Department of Health and Human Services issued the advisory council’s draft plan. Click here to read the plain in its entirety or click on the first link on the page to download it as a PDF. The focus of the plan still calls for a viable means to prevent and effectively treat Alzheimer’s disease by 2025. A key point calls for programs that can relieve the burden Alzheimer’s places on families and caregivers.

Read the complete article by clicking here

Devotion and love helps males take on the role of caregiver

Family members from different stations in life have answered the call and stepped up to become primary caregivers. Generally, when someone speaks about a caregiver, it is in our nature to assume the speaker is talking about a female, but that image is gradually changing. In a piece that appeared on Valentine’s Day, Vikki Ortiz Healy, a Chicago Tribune reporter, brings us the story of a number of men who proudly serve in the role of primary caregiver. Healy also provides statistics on the development of men caring for a loved one with Alzheimer’s disease or other forms of dementia. The writer uses statistics published by the Alzheimer’s Association to underscore the change. Over the last 15 years, the number of men caring for a loved one with dementia has more than doubled, rising from 19 to 40 percent. Those facts reflect the higher number of women, aged 65 and older, who are battling Alzheimer’s disease. In the U.S., about 3.4 million women are living with the condition compared to 1.8 million men, according to the latest figures. Researchers cite the smaller size of the average family and the separation of families by great distances as some of the reasons more males are becoming caregivers. Experts attribute the increase in male caregivers to several societal changes, including evolving gender expectations as well as new life-expectancy rates, Healy wrote. I think we are just seeing more men being willing to self-identify as caregivers now, said Edrena Harrison, a social worker and specialist for the National Caregiving Center. Historically, men have always tried to help … sometimes we’ve called them family Men or the good son or the loving spouse, Harrison said. In her article, Healy talks to some male caregivers who admit the caregiver role is challenging, but it seems they would not have it any other way. They did not take on the responsibility of being a caregiver to become part of a statistic, they do it out of love and honor for the ladies they married and the vows they shared with them.

Read the complete article by clicking here

Dementia behind prison walls

Dementia is a terrible condition that affects every nationality, country, and all segments of every society. Diagnoses for the disease are on the rise and that includes incarcerated populations. Pam Belluck, a reporter for The New York Times, looks at inmates who assist other inmates with dementia behind the prison walls at the California Men’s Colony (CMC). The CMC holds minimum and medium security inmates in two separate facilities, designed as East and West facilities. Most of the inmates in the facility are serving life sentences, usually as the result of a murder conviction. Belluck explores how people around the world are struggling with and fighting to find answers about Alzheimer’s disease in a series for the Times’ called “The Vanishing Mind.” In her latest piece, the writer explains that prison populations appear more prone to dementia than the general population because they often have more risk factors. Some of the risk factors found in prisoners include: a limited education, hypertension, diabetes, smoking, depression, and a history of substance abuse along with head injuries from fights and other violence. The more risk factors a person has, the greater their chances of developing the disease. The most common risk factor is advancing age and that affects everyone across the board. Belluck writes that dementia in prison is an underreported, but fast-growing phenomenon. “Gold Coats” are the focus of her article. “Gold Coats” are inmates who assist other inmates with dementia. Instead of wearing the standard blue issued coat, they wear gold coats to denote their special status. Gold Coats receive about $50 for their work, helping cognitively impaired inmates complete the daily tasks of living, including bathing, dressing, and eating. Since they and their patients are in prison, another big responsibility of the Gold Coats is to keep their patients with dementia safe from other prisoners. Belluck somewhat limits the details about the inmates’ crimes, but does share some horrible facts about each person’s misdeeds. Their work now shows a stark contrast between the insensitivities of their crimes and the compassion required to be a Gold Coat. Belluck combined her talents with Todd Heisler, a staff reporter for The New York Times. Click here to see the photo blog. Click here to view the video.

Read the complete article by clicking here

Call center answer patients’ questions about memory loss and dementia

After the shock of learning you or a loved one has Alzheimer’s disease, the only advice about the condition a newly diagnosed patient receives is the information given by their doctor. While the physician may have a great handle on the treatment aspects of the condition, getting assistance, finding resources, and learning more about Alzheimer’s disease is the responsibility of the patient. A new phone line established by the University of Michigan Health System get its patients and families the answers and help they need. Those with questions should call the phone line, called U-M Memory Connection, to speak to trained professionals with knowledge about Alzheimer’s, mild cognitive impairment, Lewy Body disease, and other forms of dementia. We need to do a better job of making the diagnosis but also implementing care … it can be very difficult for patients to navigate their way, said Dr. Henry Paulson, director of the Michigan Alzheimer’s Disease Center and professor of neurology at the University of Michigan Medical School. The phone line is available during the hours of Monday through Friday from 8:30 a.m. to 4 p.m. The service has a goal of providing assistance in 24 hours or less. In addition to learning about a specific type of dementia, the call center’s specialists provide information on the multiple clinics and departments at the University of Michigan. Callers also learn of available services, and gain knowledge about research studies on a variety of topics. We do not want patients, their families and friends to spend a lot of time on routes that do not lead to answers, Paulson said. The U-M Memory Connection call center is a great start to solving that problem, he said. For assistance, members of the health system should call (734) 936-8803.

Read the complete article by clicking here

Dementia-capable primary care and family input vital for early diagnosis

Family members who notice their loved ones progressing from forgetfulness to more frequent bouts of memory loss should relay that information to their family doctor. Panel members on the advisory council for the National Alzheimer’s Project Act (NAPA) believe that family input could result in earlier diagnosis of Alzheimer’s disease. In light of NAPA, Alzheimer’s specialists are urging the advisory council to help overcome the barrier of early detection by including what is called dementia-capable primary care, wrote Lauran Neergaard, a medical reporter for The Associated Press. This type of care includes more screenings for potential warning signs and regular examinations of a caregiver’s mental and physical health. Neergaard uses the parents of Alexis McKenzie to illustrate her article. McKenzie’s mother has Alzheimer’s and her father serves as the primary caregiver. After her father mistakenly sent a bank deposit slip instead of a check, their communications service provider disconnected their telephone service. That prompted McKenzie, the director of an Alzheimer’s assisted-living facility in Washington, to make a visit to their home. She found spoiling food and realized that her dad was suffering from his own set of problems. The specialists requesting better care want dementia-capable primary care included as part of NAPA because most physicians will not take the time to seek input from family members because it takes more time than the usual allotment of 15 minutes per patient. When physicians conduct a longer visit, they receive no reimbursement for their extra time, said Dr. Laurel Coleman, a geriatric physician at Maine Medical Center and a member of the NAPA advisory council. Coleman says simply asking a patient with mild cognitive impairment how they are doing is not practicing dementia-capable primary care. McKenzie said her parents’ answers are believable because they are a long-time married couple that is used to the same routine. While a patient with Alzheimer’s may not remember what happened recently, their longer-term memories remain intact, wrote Neergaard. Hence, the patients’ answers to the doctor may not be what happened recently, but it probably happened sometime in the past. This makes it harder for physicians to get a true picture and shows why input from family members is a necessary part of the screening process. Neergaard lists some methods to help physicians and family members bypass the hidden-dementia challenge. The writer notes that Medicare’s new annual wellness visit pays for cognitive screenings that will identify those patients who need additional testing. Many health care experts recommend advanced-care planning, which provides the patient the opportunity to state the type of care they want while they are still capable of making decisions. Since a health care proxy does not come into play until a person is quite sick, patients should choose to sign a “release of information” that allows doctors to immediately discuss a patient’s care with whoever is named on the release. And in case a person’s behavior becomes dangerous, doctors can violate patient confidentially to keep everyone safe.

Read the complete article by clicking here

Grandson learned to “live in the moment” and find joy with his grandmother

While Alzheimer’s disease forces people to embark along a challenging path, each journey is unique to the individual who makes the trip. Robert Leleux, an author who contributes to The New York Times’ “Well” blog, wrote a piece that tells of his grandmother’s experience with Alzheimer’s. Leleux says his grief prevented him from accepting the change she was undergoing. Alzheimer’s affects each person in a different way, which results in a wide range of behaviors. As his grandmother, JoAnn, progressed along the course of the disease, Leleux and his grandfather noticed that her grudges, hurt feelings, worries, and regrets disappeared along with her memories. The author says that while she lost reason, she gained clarity. He easily relates the experience of JoAnn’s condition because she raised him. JoAnn’s clarity helped her reconnect with her estranged daughter, who is Leleux’s mother. After JoAnn’s diagnosis, she was telling a familiar story, but forgot the punch line. Since she could not remember the crucial element to her story, she ended it by saying, “The wonderful thing about Alzheimer’s is that you always live in the moment.” Of course, Leleux memorized that ending and began to wonder why other people do not allow those with Alzheimer’s to live in the present instead of attaching a stigma to the person with dementia. The author employs young children as an example to underscore his point. Leleux says that most people would not pity a small child if they could not go to the bathroom by him or herself. Furthermore, in a nursery school, the children attend a facility with an environment that stimulates and nurtures the children in hopes of making them into productive individuals for society. Unless an individual with Alzheimer’s is financially well off, the nursery school setting is the complete opposite for senior citizens in most nursing homes, Leleux wrote. He says that people with Alzheimer’s are pitied if they cannot go to the bathroom by themselves because society feels their “usefulness” has ended and the stigma of the condition makes the quality of their lives less important. JoAnn’s journey through Alzheimer’s caused Leleux to rethink his feelings about her condition. So, instead of pitying her, he adapted his thinking and realized that the changes she was going through were the truth for her in the present. Even though JoAnn could no longer tell her signature anecdotes or remember the past, Leleux said what was gone in her was not missing. His realization helped him when JoAnn was in the latter stages of Alzheimer’s. The more fully I understood that, the more present I was able to be during her final years, Leleux wrote.

Read the complete article by clicking here

Children, pets and the arts can ‘reach’ patients in the latter stages

As loved ones with Alzheimer’s disease fall deeper into an abyss as the condition progresses, many family members remark that it is as if their loved one is “no longer with us.” A variety of media reports touts the arts as one way to reach the loved one you used to know. In addition to the arts, Marie Marley, a caregiver, author and a blogger for The Huffington Post, writes that children and pets will also brighten up a visit. A visit by a child can reach a person with dementia at a deep, emotional level that adults often cannot, Marley wrote. Most loved ones with dementia cheer up when a child walks in the room, even patients in the latter stages, she wrote. When you take a child to visit a loved one with Alzheimer’s, ensure the child wants to visit and feels comfortable with the outing. If there is no child available, pets are a good surprise that produces activity and awareness while visiting people with dementia. Maybe your loved one will feel special from the attention that only a dog can lavish on an individual. Dogs love the individual with dementia unconditionally and express their love actively to the delight of the patient, Marley said. Soft fur, a wet tongue across the face, even a bark brings a smile to all the faces, said Susan Gilster, executive director of the Alois Alzheimer Center in Cincinnati. If you are not ready to bring your grandchild or pet just yet, music is probably one of the easiest ways to reach patients with Alzheimer’s. Many family members are amazed that their loved ones cannot remember what happened recently, but listen disbelievingly while their patient sings every word to a song that was popular more than 30 years ago. Marley echoes the findings from many studies that say music can have positive effects on the health and social functioning of patients with Alzheimer’s. In fact, music may be the only thing to which some late-stage patients will respond, Marley wrote. The last portion of the arts involves observing or creating artwork. A trip to an art museum seems to calm patients and provides a low-cost activity for a day. For more out-going caregivers, giving some crayons or paints to their loved ones is a great way to get the creative energy flowing. Loved ones can also make scrapbooks, mold objects out of clay or do a safe hobby that they pursed throughout their lives. Marley advocates experimenting with these types of methods to find a spark that creates a rewarding visit for loved ones as well as caregivers.

Read the complete article by clicking here

The first goal listed for the National Alzheimer’s Project Act (NAPA) is to prevent and effectively treat Alzheimer’s disease by 2025.  That goal is one of five, but it has attracted the most attention because those who work in the field of Alzheimer’s research do not believe they will find a cure in the near future.  Congress authorized NAPA in late 2010 and President Obama signed the legislation into law on January 4, 2011.  The law authorized a procedure to create a national plan that combats the disease.  Another important goal of the act is to speed up the development process of treatments designed to prevent, stop or reverse the course of Alzheimer’s disease.  To help shape the plan, it also established the Alzheimer’s Advisory Council, which serves to oversee the steps to produce a national strategy that coordinates the country’s approach to research, treatment, and caregiving.  Along with research experts, health care providers, caregivers, and representatives from a number of federal agencies serve on the advisory council.  The council’s role is to provide recommendations for the national plan to the secretary of the Department of Health and Human Services, a position currently held by Kathleen Sebelius.  While developing a treatment by 2025 seems like an unattainable goal, the council stressed that millions of families need better help now to care for their patients with Alzheimer’s disease, wrote Lauran Neergaard, a medical reporter for The Associated Press.  Dr. Ron Petersen, an Alzheimer’s specialist at the Mayo Clinic who chairs the council, said families are already approaching the advisory committee to remind them of the enormity of our task.  While the panel cited 2025 as a target date, some council members say it is not aggressive enough, and believe 2020 would be a better target date, Neergaard wrote.  We want to be bold, said Dr. Jennifer Manly, a member of the advisory council and an associate professor of neuropsychology at Columbia University.  We think the difference of five years is incredibly meaningful, she said.  Under the guidelines, the council will provide yearly reports on its progress.  For two days last week, the panel met to further hone the outline for the national Alzheimer’s strategy during its first annual meeting.  Enhancing the quality of care and efficiency, expanding support for patients and families, increasing public awareness and engagement, and improving data to track progress are other goals currently under proposed by the panel.

Read the complete article by clicking here

Husband’s love and devotion to his wife transcribed into a handwritten farewell

“Every day I see my kind, wonderful wife slipping away in her daily habits, and it tears me up. Sometimes she seems to know what she’s doing and a lot of times she doesn’t know at all. I cannot hold back my tears.”  Hans Gosch wrote those words in a journal as way to chronicle the life he had with his wife, Gloria.  She was 76 years old when doctors diagnosed her with Alzheimer’s disease.  While Alzheimer’s hits everyone differently, Hans’ story is a common one, wrote reporter Mike Urban for the Reading Eagle.  They were married for 53 years at the time of her diagnosis and had both retired when they were 62 years old.  When she was age 76, Hans noticed that Gloria was forgetting things.  First, it was her nail clippers, and then she began to walk to the kitchen and forget why she went there.  As her memory got worse, she became more frequently confused.  It all came to a head when she got lost while driving on familiar roads.  During a regular exam, Gloria’s physician noticed her deterioration, Urban wrote.  She was diagnosed in the winter of 2008.  That was the year they lost their life savings in the stock market collapse and when Hans suffered with a bad knee and hip.  Hans, older than Gloria by one year, served as her primary caregiver.  Hans memorialized their journey by writing in his journal about the life they had together and his love for his wife.  He started the journal as a method to cope with the crush of Alzheimer’s.  He described his commitment to care for Gloria and his struggle to do so in 123 handwritten pages in a journal he called “My Love Story – A Farewell Story,” Urban wrote.  I loved this woman so much, I had to express my feelings as we went along, Hans said.  Gloria died from Alzheimer’s disease on August 17, 2011 and five months later, Hans still grieves for her, Urban wrote.  In his journal, Hans wrote: “The best part of my life was gone. I hope the good Lord will take good care of her.”  His story not only shows his love and devotion, but it also illustrates what caregivers and families do to aid their loved ones with Alzheimer’s disease.

Read the complete article by clicking here

Men face a 40% higher risk for MCI than women

A study of 1,450 people found that men are at a higher risk of developing mild cognitive impairment then women.  Mild cognitive impairment (MCI) refers to the subtle problems with memory and thinking skills that often precede Alzheimer’s disease, Lisa Esposito wrote for HealthDay.  Rosebud Roberts, the lead researcher and a professor of epidemiology at the Mayo Clinic in Rochester, Minn., said the higher risk for men may be due to timing of risk factors for dementia.  Diseases such as obesity, diabetes, and hypertension may occur at an earlier age in men than women, she said.  The cohort contained both men and women who were between age 70 and 89.  At the beginning of the study, all participants were free of dementia.  The researchers tested the participants at 15-month intervals to measure memory, executive function, visual-spatial skills, dementia symptoms, and neurological, psychological and mental status.  After each cycle, a panel reviewed the results of the tests and provided fresh assessments of the subjects’ cognitive status.  The researchers reported that 296 subjects had become mildly impaired about three and a half years after the start of the study.  New cases of mild cognitive impairment were consistently higher among men, except in the 85 to 89 age group, Roberts wrote.  For males who did not finish high school, and for those with a high school diploma, the study found a greater risk for mental decline.  For males without a college education, the study’s results concluded that males in this category have an “unexpectedly high risk” of impairment that did not involve memory loss.  Even if a person displays symptoms of MCI that does not mean the individual will go on to develop Alzheimer’s disease.

Read the complete article by clicking here

Forget birth order: Siblings should share equally when caring for their parents

“Birth order,” which sometimes gives status to the first-born child, really did not enter my mind until I watched the classic 70’s show “The Brady Bunch.”  Columnist Linda Rhodes pondered this quandary when a reader asked her whether she believes birth order plays a role in how siblings share the caregiving duties of their parents.  Rhodes, a columnist for The Patriot-News and a former Secretary of Aging for the Commonwealth of Pennsylvania, answered that while science falls on both sides of the coin on this predicament, the perceptions perfected after years of being part of a family may cause some siblings to see things differently.  In some ways, Americans generally base their opinions of siblings on when they were born and tend to use birth order to explain their behavior.  Rhodes addresses the stereotypes of the first, middle, last, and the only-born children at the start of her column.  She wrote that typecast of the first-born child is usually high-achievers, leaders, motivated and confident, which tends to make them seem to be bossy perfectionists.  Only-born children seem to mirror first-born ones, except that they never dealt with the complexities of having siblings.  Only-born children are classified as perfectionists as well, but they tend to be more selfish.  While the middle- and last-born children seem friendly and well adjusted, Rhodes says their downside is that they feel left out of the family and come off as self-centered and too laid back.  Generally, we fall to these types of descriptions when we disagree or do not understand why a sibling acts in a particular manner.  To answer her reader’s question, Rhodes spoke with Frank J. Sulloway, considered as one of the most respected social scientists on birth order and the author of “Born to Rebel: Birth Order, Family Dynamics, and Creative Lives.”  According to Sulloway, gender, differences in age among your siblings, size, and the amount of resources your parents had to divvy up throughout your childhood all play a role; it is not just the order in which you were born within your family.  While Sulloway listed some other factors to consider, Rhodes says birth order should not matter when it comes to taking care of your parents.  The responsibility should be shared equally, not simply left up to the oldest daughter or dumped on the youngest sibling.

Read the complete article by clicking here

Alzheimer’s support groups offer emotional support and helpful information

We all know that taking on the responsibility of a caregiver is demanding and challenging.  Eventually, the caregiver will need some help.  Maybe the help is in the form of some assistance around the house or a family member or friend that provides a short respite.  However, some believe caregivers fail to attain what they really need until they join a support group.  In a piece for The News-Press, reporter Dayna Harpster writes that what caregivers really need is a well-tuned ear and emotional support.  While you may not have the time to find a compassionate ear, many sympathetic people meet regularly as part of Alzheimer’s support groups.  Dolores Bertolini discovered this when her 84-year-old husband slipped away one day while they were attending a parade.  Her husband, Aldo, suffered from Alzheimer’s disease and was prone to wandering.  It took two hours for first responders to find him.  That day, she found out that her fear was familiar to plenty of others, Harpster wrote.  Bertolini eventually joined a support group, but she had her doubts about participating.  It is a special thing, it is so personal and yet it is the friendliest thing I have ever been involved in, she said after she began attending the meetings.  Marilyn Harder also had reservations about attending a support group.  Harder, a 69-year-old nurse, serves as the primary caregiver for her husband Ken, who is battling Alzheimer’s disease.  Harder knew about programs for Alzheimer’s patients, including adult day centers and support groups, from her career as a healthcare professional.  I did not think I needed (them) yet, she said.  During a long vacation from working with a hospice group, she noticed much more when she spent the entire day at home as opposed to coming home tired after working all day.  She decided to attend a support group, but she was skeptical; she admitted she was in denial about needing emotional support.  Harder said when she heard other people’s stories, she felt even more secure and comfortable.  That is because Alzheimer’s disease is “an emotional disease,” she said.  To have friends who have been through it before to help you is really important, Harder said.

Read the complete article by clicking here

Seven signs to assess your aging parents’ health

Now that the holidays are over and you have returned from a weeks’ visit to your aging parents’ home, you might wonder, “How are your parents doing?”  To assess their health needs, the Staff at the Mayo Clinic assembled seven concerns that you should investigate to consider whether they need additional help.  For the first concern, see if your parents are taking care of themselves by checking out their appearance.  See if they shower regularly, wash their clothes, and perform other tasks associated with daily grooming.  Loss of memory is the second concern.  While occasional forgetfulness is associated with aging, forgetting common words or getting lost in their own neighborhood can be signs of memory loss.  Determining whether you parents are safe in their home is the third concern.  You should look with a critical eye for things that might cause problems.  Difficulty navigating a narrow stairway, thrown rugs, or something as simple as trouble getting into the bath might be some signs of safety issues.  The fourth anxiety focuses on driving and being safe on the road.  Do they become confused or lack the coordination needed to drive safely?  Another concern to consider is whether your parents have lost weight without trying to do so.  The Staff says that is a sign that something is wrong.  Ask if they have difficulty cooking or if they have a loss of smell or taste.  For the sixth concern, evaluate your parents’ mood.  Ask how they are feeling and look for signs of mood swings or a drastically different disposition.  Finally, for the last concern, discover if your parents are able to get around.  For this point, ensure that your parents can walk usual distances without discomfort or if they would be better off with some assistance.  Along with the signs and questions to ask and consider, the Staff also includes some underlying conditions that may heighten their symptoms.  Depression, malnutrition, physical impairments, cancer or dementia are some of the conditions that may change your parents’ behavior.  The Staff also listed some steps you can take to assist your parents.  Some of the actions you can take include sharing your concerns with your parents, encouraging regular medical checkups, thinking about home care service, contacting their doctors for guidance, and seeking help from local agencies.

Read the complete article by clicking here

Nataly Rubinstein, a licensed clinical social worker and certified geriatric care manager, addresses a common concern of family members who may live far away from loved ones with Alzheimer’s or other forms of dementia. While they may know about a loved one’s recent diagnosis, family members and friends, who have not recently visited their loved one, may wonder what to expect and how to act, Rubinstein wrote for The Huffington Post. While her guidance concerns holiday gatherings, her advice should be considered as a template for all family members and friends who visit a loved one with dementia. Rubinstein provides six considerations to keep in mind to make the visit an enjoyable experience. Her first consideration tells us to understand why we feel the way you do. For family and friends who are greeting loved ones with dementia during the holidays, Rubinstein said it is OK to feel sad, confused, worried or even frustrated about a family gathering. This time of year is supposed to be “the most wonderful time of the year,” but you may not feel up to it while acknowledging a loved one has dementia. Her second consideration reminds us to manage our expectations. Alzheimer’s is a progressive condition that slowly robs a person of their mental function over a period of years, so while dad, or a favorite aunt, seemed great last year, they may not seem so good this year. Acknowledging the elephant in the room is another consideration offered by Rubinstein. With no known cure, a loved one could die on Christmas, but do not insert the dreadful “what-if” into every conversation. In reality, anyone could die on any given day. Being sympathetic of the needs of the patient and the caregiver is another consideration. Since Alzheimer’s is a progressive disease, family and friends may want to call ahead to learn about the loved one’s current status and understand how their needs have changed. For the fifth consideration, Rubinstein suggests that family and friends should learn some basic knowledge about the stages of Alzheimer’s and interact with their loved one appropriately. In the early stages, the disease has not changed your loved one too much, so your interactions with them should be rather typical. In the moderate stages, you may notice that the loved one cannot remember names, seems uncomfortable in groups, constantly repeats things, and might not remember recent memories. To make the loved one feel more comfortable, Rubinstein suggests talking about older memories, holding one-on-one conversations, and being patient with your loved one. In the latter stages, your loved one may not have the ability to hold a simple conversation, but they still have feelings, so a hug, a touch or squeeze of the hand is meaningful or comforting, the writer wrote. It is becoming more widely accepted that patients with dementia respond to music. Since it is the Christmas holidays, singing the traditional songs should warm everyone’s heart. Caregivers are the focus of Rubinstein’s last consideration. Caregivers should let themselves off the hook and decide what they can do and what is too much for them. Again, another concern for caregivers during the holidays is to adapt to conditions and forgo pushing yourself too hard to make things how they used to be, Rubinstein wrote.

Read the complete article by clicking here

Gifts for caregivers that show you care

Choosing the perfect gift for family members and friends could involve a lot of thought. If there is a caregiver on your list, the decision could be that much harder. When shopping for caregivers, Michael Noe and Miriam R. Callahan say we should choose gifts that will make caregiving easier and provide a much-needed respite for them. Noe, an associate dean at the University at Buffalo School of Public Health and Health Professions, and Callahan, a clinical assistant professor at the same school, recommend that we select gifts that show we care about the caregiver. It is common knowledge that caregivers, who care for a person with Alzheimer’s disease or other forms of dementia, are under a lot of stress. Anything that a friend or family member can do to acknowledge that stress and help the caregiver deal with it, essentially caring for the caregiver, will make an enormous difference, Noe said. Noe and Callahan devised a short list of gifts for caregivers. Items on the list include movie tickets, dinner out or work performed by professional housecleaning, snowplowing or landscaping services. They also suggest gifts of time, where the giver offers to stay with the loved one with Alzheimer’s, giving the caregiver the opportunity to do whatever they want. Another suggestion is to flip the usual roles and pamper the caregiver. With this gift, the caregiver is the recipient of the attention from businesses such as spas or salons. Noe and Callahan offered a list of ideas to ease the burden of caregiving. Portable grab bars, a type of lazy Susan that makes it easier for people with mobility problems to get into and out of vehicles, respite videos, books by other caregivers, and Alzheimer’s-proofing the residence would be viewed as cherished gifts by any caregiver. Buying identical copies of items is also a good suggestion to reduce the loved one’s anxiety when their favorite piece of clothing is in the wash or an item is temporarily missing. Perhaps the best gift for a caregiver might not involve a trip to the mall or much thought. One of the best things family members and friends can do for caregivers is to listen, communicate and be honest, Noe and Callahan said.

Read the complete article by clicking here

Give thoughtful gifts to caregivers and loved ones by employing creativity

If you are still looking for gift ideas for caregivers and their loved ones with Alzheimer’s disease, Tom and Karen Brenner have a few additional ideas that involve a little creativity. The Brenners are Montessori gerontologists who research, train, consultant, and write articles in a bid to change the culture in the field of aging. With all their interests, they learn various ideas from a variety of people. One of the ideas is the creation of a “Job Jar.” The idea comes from Denise Brown, who created a Web site about caregiving, the Brenners wrote, in an article for the Alzheimer’s Reading Room Web site. To use the Job Jar, a caregiver fills the jar with slips of paper that contain tasks, primarily errands or chores that would be most helpful to them. Employing the Job Jar aids caregivers by eliminating the halfhearted attempts of family members and friends who want to help, but rarely offer to perform a specific task. With the Job Jar, the caregiver is virtually guaranteed to get the help they need without asking for it, the Brenners wrote. Another idea, collecting stories from someone’s life and transforming the tales into a book, is a favorite project of the Brenners. During the holidays, a beloved family member of the loved one with Alzheimer’s can read the book aloud to those gathered during a family celebration. The main objective of the book is to share memories and stories from the loved one’s life, the Brenners wrote. These ideas will help you give a gift that is a little different and more meaningful than the usual presents purchased at the big-box stores.

Read the complete article by clicking here

Plan quiet celebrations if your family includes a loved one with dementia

With the holidays upon us and family and friends in close proximity, caregivers should still keep a watchful eye on their loved ones with Alzheimer’s disease. There is no better situation than surrounding oneself with love and kindness, but holiday gatherings can be extra stressful for patients with dementia. Sheryl Ubelacker, a health reporter for The Canadian Press, reminds us that the holidays present unanticipated challenges for families with a loved one with Alzheimer’s disease. The writer uses the experience gained last year by Linda Finkbeiner of Exeter, Ont., when she and her husband Jim traveled to their son’s house for a Christmas brunch. Doctors diagnosed Jim Finkbeiner with early-stage Alzheimer’s when he was 64 years old. During their holiday visit, Jim experienced a sensory overload from the overcrowded house, the noise, and his three grandchildren, Linda Finkbeiner said. The excessive stimulation agitated him and he just kind of withdrew to another room for some quiet time, she said. A little while later, he wanted to go home, and after their arrival, he went straight to bed at 2 p.m. That experience ended their holiday celebration for the day. However, Finkbeiner said she was more disappointed in herself that she had not anticipated that a joyful celebration would lead to a sensory overload for her husband. While putting up blinking, multi-colored lights, shiny decorations, and a Christmas tree are traditional ways to mark the holidays, decking the halls can lead to anxiety for loved ones with dementia, Ubelacker wrote. For the person with dementia, their ability to take in all that stimulation and to handle it well is reduced, said Kathy Hickman, education manager for the Alzheimer’s Society of Ontario. Memory includes logic, knowledge, concentration and judgment, so the constant decline of our recollections can lead to some unexpected behaviors, said Nataly Rubinstein, a licensed clinical social worker and certified geriatric care manager. To make the holidays more enjoyable for loved ones with Alzheimer’s, the best recommendation is to plan for modest celebrations with less activities. During these celebrations, continue to involve the loved one with dementia, especially in the early stages, Hickman said. After a diagnosis, some family members may decide not to include the loved one with Alzheimer’s in the festivities, which can be really difficult for the patient, she said. Eliminating a person with dementia from family activities may make them feel as if they are not being included and not an important part of the family, Hickman said. This year, Finkbeiner plans to attend the brunch with her husband because it is Christmas, she said. This time she plans to make it a comfortable Christmas for Jim. Her advice to others caring for a loved one with dementia is to recognize the signs that things are not going well for the person and to be prepared to alter plans. In other words, be adaptable, Ubelacker wrote.

Read the complete article by clicking here

Caregiver burnout creeps to the forefront, briefly

Caregiving is a tough job for everyone who takes on the responsibility. Without any formal training, most family caregivers step into the role with no idea what to expect. At first, the patient just needs a little help and the role of a caregiver does not seem so bad. As the loved one requires more and more assistance with the tasks of daily living, the role of a caregiver becomes a 24/7 job when the effects of the progression of Alzheimer’s disease advances to the latter stages. Eventually, the responsibility might overwhelm a caregiver. Celia Watson Seupel, a writer who contributes to The New York Times’ “New Old Age” blog, slid into the realm of caregiver burnout while she was struggling with an ideal for a new book. Seupel’s article sheds light on how caregiver burnout sneaks up on you and why it is hard to recognize. For the last year and a half, Seupel has cared for her mother, who has vascular dementia. Her mother lives with her in New York City. After one unproductive day of working on her book ideas, she knew she still had to care for her 93-year-old mother. As she exited her home office, Seupel found her mother waiting and ready to go to a friend’s house for lunch. Her mother said it was 11:24 and asked her if it was time to head off to their appointment. Seupel exploded in anger as she reminded her mother to look at the schedule on the whiteboard, which listed their departure time at 11:45. Her explosive reaction left Seupel feeling like a bad person, but she thought she was just having a bad day. As the days passed, her outlook did not get any better and she felt irritated with everything done by her mother. While the writer had heard about the adage that caregivers “should take care of themselves,” she did not realize that she had neglected herself. She enacted some of the tips about caring for a patient with Alzheimer’s and set herself and her mother on a schedule. The event left her wondering why she suddenly disliked her mother and hated taking care of her. Barry J. Jacobs, a psychologist and author, contributed Seupel’s feelings to a matter of resentment, calling it a clear sign of burnout. Sometimes caregivers have a difficult time distinguishing between resenting the caregiving and resenting the person, he said. Resentment, anxiety, depression, sleep issues or feelings of dread are some of the symptoms of caregiver burnout. Since most family caregivers lack any formal training, they probably do not recognize the signs until they are “very symptomatic,” Jacobs said. Taking on the responsibility of being a caregiver may stem from family obligations where caregivers put their aspirations on hold to do all they can to assist their loved ones. Before she began serving as her mother’s caregiver, Seupel practiced mediation. She resumed the practice after a friend asked her if she still did it every morning. When she finished her first session of meditation, she emerged to find her mother standing on their balcony. She saw her mother bathed in a new light and all the feelings of the love she had for her mother came rushing back to her. Seupel realized she did not hate her mother, but she was spiritually and emotionally exhausted. After her realization, she reduced her reliance on the schedule of routines, made time to go out with friends, and started taking respites. From her experience, Seupel learned that taking time for herself is fine, but what counts is how important the quality of that time is, she wrote.

Read the complete article by clicking here

University of Iowa presents a free colloquium on legal issues and dementia

The more we age, the greater our likelihood of developing Alzheimer’s disease. Alzheimer’s research shows that advanced age is one of the factors that trigger the onset of the condition. This year, large portions of the generation known as baby boomers began to hit the big 6-5. By 2030, when that entire generation is over 65, the number of older Americans with some form of dementia will reach epidemic numbers. Without some assistance and guidance from advocates, health experts, and the federal government, many of these older adults will lose their capacity to make decisions about their health and wealth. In a bid to start filling this void, the University of Iowa College of Law’s National Health Law and Policy Resource Center (NHLP Resource Center), has invited the public to take part in a free class. The colloquium, titled “The Aging Population, Alzheimer’s and Other Dementias: Law & Public Policy,” is set to address the legal needs of the aging population and the basics of Alzheimer’s disease. The colloquium, which is a conference where specialists deliver addresses on a topic and answer questions related to them, will be broadcast via the Internet during the spring semester. The first session starts on Thursday, January 12, 2012. The class meets on Thursdays for a total of 13 weeks. Nationally recognized legal and public policy experts will join with specialists, on Alzheimer’s disease and geriatric care, to lead the sessions. Josephine Gittler, a professor of law at UI and the director of the NHLP Resource Center, and Dr. Kathleen Buckwalter, a professor emerita of gerontological nursing at UI and a co-director of the NHLP Resource Center, are the course’s instructors. Please click here to view the class schedule and get the reading material associated with each session. You can watch the presentation live as it occurs or download the session as a podcast at your convenience.

Read the complete article by clicking here

Most families affected by Alzheimer’s disease know that November is “National Alzheimer’s Disease Awareness Month,” but some members of those same families are not aware that family caregivers are honored during the month as well. Jamie Huysman, a reporter for the South Florida Sun Sentinel, wants everyone to know that November also honors caregivers as “National Family Caregivers Month.” Huysman writes that it is important to celebrate this special month by becoming aware that as the U.S. population ages, an increasing number of people will become caregivers to meet the need. The writer says that family caregivers provide $400 billion of in-kind care, making these unpaid caregivers the group that is responsible for the majority of the nation’s actual healthcare. Huysman, who is a psychologist and licensed clinical social worker, writes that it is equally important for caregivers to see to their own needs, reminding us that a disproportionate number of family and professional caregivers die before their loved ones and clients. He compares family caregivers to first responders, telling us that some of his patients had “compassion fatigue,” the same clinical situation generally associated with police, firefighters, EMTs, and clergy members. First responders routinely run into burning buildings when others are running out, while family caregivers do much the same thing, Huysman wrote. As a certified compassion fatigue therapist, he calls family caregivers “Family First Responders” and says they may succumb to caregiver burnout or compassion fatigue. As Alzheimer’s progresses to the latter stages of the disease, the caregiver is the one who meets all the needs of the loved one with the disease. While the caregiver spends more time addressing those needs, the caregiver may reach a state of physical, emotional, and mental exhaustion. Experts refer to this state as caregiver burnout. Huysman says compassion fatigue is a step beyond caregiver burnout. It occurs when unresolved traumas are triggered through taking care of others and bearing witness to their stories, day in and day out, he wrote. With the holidays fast approaching, Huysman says this is not the time to become a martyr. November could be the appropriate time for a caregiver to reassess their situation and give him or herself the gift of a healthy life. Step back and take a break, ask your family members to take over for a while or at least contribute to the care of the loved one. Since the government has yet to address the impending Alzheimer’s epidemic, where would loved ones with Alzheimer’s be if they could not rely on healthy, family caregivers.

Read the complete article by clicking here

Family members in denial create obstacles to caring for patients with Alzheimer’s

A person’s refusal to believe that a family member suffers from Alzheimer’s disease adds more confusion to the dynamics of caregiving. Angela Lunde, who writes the Alzheimer’s Blog for the Mayo Clinic, addressed a comment from one of her readers. The reader, who Lunde refers to as Norma, reported that her brother insists that his siblings not fix any meals for their mother who has mild Alzheimer’s disease. The brother believes that since their mother only has short-term memory loss, she will eventually figure out how to prepare her own meals. From his statements, Norma thinks her family is in denial about their mom’s condition and is looking for yet another reason to stay uninvolved. Lunde writes that readers who comment on the blog frequently mention the theme of family members in denial. She says that the denial is similar to a person who is new to the role of caregiving, when caregivers debate between promoting independence and offering help. The compassionate nature found in most of us want to step in and help, but we realize it may feel as though we are giving up on the person or crushing their dignity, Lunde wrote. The writer says it is not always a memory problem or one of forgetfulness; sometimes it is a decline in processing the steps needed to complete a task. Many experts note that executive functioning, which involves the skills needed to plan, organize, initiate, and monitor actions, is one of the first abilities affected by Alzheimer’s. So, while Norma’s mother should be able to make her own meals, she just cannot organize, plan, and execute all the steps needed to prepare a meal. Everyone can agree that patients with Alzheimer’s did not choose to stop making dinner, managing finances, or driving, Lunde wrote. They are not suffering a bout of laziness, or being unmotivated and no one wants to give up their independence. The brother will need to realize that people with Alzheimer’s cannot “just try harder” and it is not realistic to expect them to do all they used to do, she wrote. Her advice to Norma was to diffuse any anger she has by making piece with the way things are in her family. Choosing to operate from a place of acceptance is a form of self-care, Lunde wrote.

Read the complete article by clicking here

Aggressive behaviors: No one wants my sick, darling dad

Fiona Phillips has had it with the way licensed health professionals are treating her 76-year-old dad who has Alzheimer’s disease. Phillips, a reporter for The Daily Mirror, wrote an article a few weeks ago about finding a facility to properly care for her father. She placed him in a specialized dementia care home and felt relieved that he would finally receive the care he needed from those trained to managed his symptoms. Her father’s dementia causes him to be aggressive and combative, which are common behaviors for some patients with Alzheimer’s disease. The writer’s family includes two young sons and she felt she could no longer handle her dad’s uncontrollable behaviors. Phillips said she was relieved after meeting the staff at the facility, referring to them as the most amazing, committed staff. The next morning, she received an urgent call from the facility, saying they could not manage him because he had periods of aggression and they felt at risk. In the latter stages of the condition, it is well known that patients with Alzheimer’s may develop bouts of agitation where they may become physically or verbally aggressive. The agitation also causes them periods of restlessness, delusions, hallucinations, and a general emotional distress. In addition, you must add wandering to that list of behaviors. Phillips thought the specialized facility she selected could manage her father’s symptoms. Needless to say, the call greatly angered her. Phillips contrasted the medical response of a patient with Alzheimer’s to a patient who suffered a heart attack or has cancer. There would be a whole pool of care and sympathy for the cancer or heart attack patient, but for some patients with Alzheimer’s, even trained professionals sometimes shy away, she wrote. Instead of blaming the disease, these professionals seemingly hold the patient with Alzheimer’s at fault. Even though, they should know better. That week was a rough one for Phillips. She started the week by helping publicizing the UK’s Department of Health’s latest drive to encourage test for people who think they might have early signs of dementia. Hours later, police from Hampshire were searching for her father after he went missing for eight hours. Her father would rather be dead than here as he is, she said. The writer concludes that the whole reason that a cure has not been found for Alzheimer’s, despite the UK’s boasting that it has some of the world’s top scientists, is the lack of research funding. That has to change, Phillips wrote.

Read the complete article by clicking here

Taking steps to limit your loved one’s wandering

Serving as a caregiver is a tough, 24/7 job where caregivers generally stay with their loved one with Alzheimer’s disease for the majority of time. When the caregiver takes a moment to go do something else to help their loved one, upon their return they might find that their loved one is gone. Your loved one is wandering, which is defined as traveling by foot or car and becoming disoriented. Wandering is a common behavior among people with Alzheimer’s disease. About 60 percent of people with Alzheimer’s wander at some point in the course of the disease, according to Beth Kallmyer, senior director of constituent services at the Alzheimer’s Association. Elizabeth Cohen, a senior medical correspondent for CNN, reviews ten ways to limit wandering and keep your loved one safe. Caregivers should think about wandering as a top concern that far outweighs the loved one’s behavior of repeatedly asking the same question or even leaving the stove on in the kitchen, Cohen wrote. The second step reminds us to notice the red flags of wandering. While wandering can happen at any time, it is more likely in certain situations. For example, a loved one with dementia could easily start to wander if they are in an unfamiliar environment. Some clues from patients with Alzheimer’s may include them saying, “It is time to go to work” or “I want to go home.” The third step involves distracting patients with Alzheimer’s. Reasoning with the person will not work, so a small distraction that encompasses their concern is the best course of action. In the fourth step, a caregiver can get a little inventive and block or disguise the exits. Of course, Cohen warns that you should never lock or trap a person with dementia in a home alone. If another family member is with the loved one, you can add a screen, which looks like a shelf of library books to disguise the door. Labeling some of the rooms in the residence with pictures is another step to enact to keep them from wandering. The sixth step involves keeping your loved ones busy with some light activities. Everyone gets bored, so folding clothes, washing the dishes or raking leaves might be a good way to break up the monotony of the day. Some type of exercise, such as walking, may tire your loved one out enough that they may just want to sit for a while, Cohen wrote. For loved ones that are prone to wandering, provide safe wandering. For this step, Cohen suggests creating a path through the rooms of your house or constructing a circular path in a fenced in backyard. Giving some thought to how technology can help you track your loved one – if they do wander – is the ninth step. If these steps do not limit your loved one’s need to wander, finding a facility to place them could be the safest option for all concerned. Hence, the last step is finding an appropriate facility. Caregivers and family members should ask questions to determine whether a facility can manage patients with dementia who wander. “Is the door monitored, either electronically or by staff?” That is one question family members should ask the facility’s staff, said Lawrence Schonfeld, an Alzheimer’s expert. Also ask about electronic devices and the facility’s strategy for finding a loved one if they decide to wander.

Read the complete article by clicking here

Suggestions to help aging parents avoid loneliness

Once a person gains their independence, they really do not want to give it up. To maintain that freedom for some seniors, they may need help from a caregiver. The relationship between patient and caregiver can take many turns. Carolyn Rosenblatt, a reporter for Forbes, provides some tips on when a patient falls in love with his caregiver. The writer tells the story of a fictional father who is a widower that needs help at home. His caregiver is a young woman who comes over several times a week to cook and clean. The father becomes dependent on her and develops an attachment to her. Then, he says he loves her and starts buying her expensive gifts, Rosenblatt wrote. If the father has a form of dementia, a guardianship would protect him from undue influence. If your parent has no cognitive impairment issues, some states have laws on the books that specifically address caregivers and gifts. However, the determination of whether the elder has the capacity to make decisions concerning gifts is left in the hands of lawyers and judges, Rosenblatt wrote. She contributes the dad’s new infatuation to loneliness. While your loved one might only be seeking companionship, how do you protect them from potential predators posing as caregivers? Rosenblatt offers six suggestions to keep aging parents safe. Her first tip is to work on addressing the intense loneliness that aging and isolation brings to the elderly. For the second suggestion, adult children should try to encourage their parents to engage in social participation at community centers where other, similarly situated folks congregate. Adult children could also interact more with their aging parent by planning a variety of family events and celebrations. For the fourth tip, Rosenblatt says make the time to visit your loved one more often. Increasing the frequency of calls to your parent is the fifth recommendation. For her last suggestion, Rosenblatt advises us to seek help if your parent is likely to become upset if you bring up the subject of loneliness. Your aging parent may not be to open to these tips, but attempting to enact them might take away any guilt you may feel when they are gone, Rosenblatt wrote. If they work to decrease the loneliness, you can avoid some awkward situations with dad’s new wife, who coincidentally could be half your age!

Read the complete article by clicking here

This holiday season, use the “10 Warning Signs” of Alzheimer’s to assess older adults

The holiday season is here and many adult children will head home to share in family celebrations. The visit provides a hands-on opportunity to really assess your aging parents and gauge how they are managing daily life. If there is a concern about memory loss or the onset of dementia, take a close look at your parents’ appearance, the status of the residence, and ask questions to aid in your assessment. To provide some assistance in the task, the Alzheimer’s Association created a guide called “Know the 10 Signs.” The first warning sign is to look for memory changes that disrupt daily life. For this point, someone exhibiting early signs may forget recently learned information and rely on memory aides or repeatedly ask about the same information. A challenge in planning or solving problems is the second sign. Look for signs of difficulty concentrating and taking additional time to do something that used to be so easy for your elderly loved one. The third warning sign involves difficulty completing familiar tasks. Examples of such behaviors include struggling to remember the rules of a favorite game or forgetting how to drive to and from a familiar place. Losing track of time, dates, seasons, and the passage of time are symptoms that illustrate the fourth sign, confusion with time or place. The fifth sign concerns trouble understanding visual images and spatial relationships. Your loved one may have problems reading, judging distance, and determining color and contrast. They may also have issues with spatial perception, which is how we perceive or react to the size, distance, or depth aspects of our surroundings. A sixth sign is difficulty with using words in speaking or writing. Adult children may notice their parents are struggling with vocabulary, following or joining a conversation, finding the right word or calling things by the wrong name. Misplacing items or losing the ability to retrace steps is the seventh sign. People with Alzheimer’s may accuse people of stealing because they tend to put things in unusual places. The next warning sign is decreased or poor judgment. Some indicators of this sign include paying less attention to grooming habits and exhibiting poor decision-making abilities when handling money. Forgetfulness may contribute to the ninth sign, which is withdrawal from work or social activities. For this sign, loved ones with Alzheimer’s may stop doing their favorite activities because they may not remember how to complete all the steps. The last step concerns changes in mood and personality. The behaviors of patients with Alzheimer’s will commonly shift from being confused, depressed, and anxious to a variety of other emotions. They also may become easily upset when someone tries to adjust their routines. If any of these signs occur frequently, a trip to the family physician may help clear things up.

Read the complete article by clicking here

Celebrate, but keep the holidays calm for loved ones with Alzheimer’s

The end of November kicks off the holiday season and that typically means family celebrations and social gatherings. While the events are fun for most of the family, a person with Alzheimer’s disease may not enjoy the festivities as much. People with Alzheimer’s tend to avoid large gatherings that include loud noises and a variety of activities, which tends to confuse loved ones in the latter stages of the disease. For caregivers living with a person with Alzheimer’s, the holidays require a decision about whether to partake or how much to participate in the celebrations. Kathy Martin, a reporter for The Courier, based in Waterloo, Iowa, says caregivers should “follow their gut” when making a decision. Martin uses her parents as an example, writing that her father died of Alzheimer’s at 62 when her mother was in her 50s. While her mother loved holiday celebrations, her father had a difficult time with them once he progressed to the latter stages of the condition. Caregivers should focus on the “what-ifs” instead of making a decision based on guilt or “shoulds,” she wrote. If you want to celebrate, you may need to make some adjustments to the way you would normally go about enjoying the festivities. For those who want to host a celebration or attend one as a guest, prepare your family and friends honestly by telling them about your loved one. You can reserve a room for quiet reflection if the atmosphere becomes too much for your loved one. As a caregiver, your time is not your own, so you may need to end your fun earlier than usual, if your loved one feels agitated or anxious. If your loved one lives in a nursing home or assisted living facility, you can visit during their best time of the day, and then spend some time with others. You should also be willing to accept offers of help and follow your instincts, Martin wrote.

Read the complete article by clicking here

Diane Sperow took on the role of caregiver like many others; she had no formal training and was not adequately prepared for the responsibility. As she noticed signs of forgetfulness in her father, Harold Christman, she assumed it was just a part of normal aging. She and her husband moved next door to her dad to help him out around the house. As time passed, she realized it was more than just occasional forgetfulness, even Christman noticed something was wrong, reporter Sue Wilson wrote for a piece in the Reading Eagle. Sperow said dealing with Alzheimer’s disease was like a roller coaster ride. She compared the experience of caring for her father to dealing with a child, except that her father lived alone in his own house. Sperow watched as the disease changed her father from an independent, hardworking person to someone who relied on her to do everything for him. She credits her husband for helping her through the journey, noting that without his help, she had no idea what she would have done. After her dad required round-the-clock care, they opted to put him in an adult daycare facility. A few years later, they obtained in-home care when he started having health issues. One day Sperow read an advertisement in a local paper about an Alzheimer’s disease seminar that was being held at the daycare facility her father attended. She and her husband found the seminar so helpful that she started attending monthly meetings. During one of the meetings, she met an associate director of a local chapter of the Alzheimer’s Association who helped her get some funding to pay for her father’s in-home care. Sperow found the support so uplifting that she is still involved with the Alzheimer’s support group, even though her father died at age 86 in February 1998, Wilson wrote. Sperow participates in the annual “Walk to End Alzheimer’s” every year with her daughter. Now, instead of being an attendee at the support group meetings, she helps answer questions from the audience. So, years after her father died from complications of Alzheimer’s disease, Sperow is taking the lessons she learned and imparting her wisdom to others who are looking for answers –– just like she was when she sat in their seats years ago.

Read the complete article by clicking here

After diagnosis: “Life is good” for patient with early onset Alzheimer’s disease

Speaking out about the affects of Alzheimer’s disease is noteworthy, but first you have to admit to yourself that you have the condition. Jim Mann knew the symptoms of memory loss because his mother suffered from dementia when she was in her 70s. He did not want to admit to the facts, so he got creative and used techniques to help him along the way, wrote Elaine O’Connor, a reporter for The Province. While he used various methods to help him at work and with the activities of daily living, he knew he had to do something after he repeatedly got lost while driving. He wrote down his problems and gave them to his doctor. After conducting tests, the doctor diagnosed Mann with early onset Alzheimer’s; Mann was 58 years old. He referred to his diagnosis as a relief. When you get the label, you think OK, at least now there is a reason, he said. O’Connor wrote that you probably would not guess Mann has Alzheimer’s disease, but she contributes that to his former profession as a government lobbyist with Canadian Airlines. He experiences lapses, but he says you have to write everything down to counter them. With his practiced techniques to offset his failing memory, Mann uses his public relations skills to advocate for the needs of people with dementia, O’Connor wrote. Being an advocate is something he enjoys and he credits his work with the Alzheimer Society of British Columbia and the national society, as key to his sense of purpose. With my mother having dementia and then myself, I have seen the need for advocacy, especially looking at issues of good dementia care, Mann said. He also attends Alzheimer’s conferences and meetings, writes letters to the editor, and speaks to groups about the issues he faces after his diagnosis. Unless you break the stereotype, attitudes will not change, Mann said. After admitting he suffers from Alzheimer’s disease, Mann has given up some things, but his upbeat personality is still evident. Life is good, he said. There is life after diagnosis, he added.

Read the complete article by clicking here

NAPA listening events allow Alzheimer’s caregivers to voice their concerns

Across the nation, patients with Alzheimer’s disease and caregivers crowd into town hall meetings to voice their concerns in a bid to help shape the National Alzheimer’s Project Act (or NAPA). NAPA is the first endeavor by the United States government to establish a national strategic plan for Alzheimer’s disease. Mark Hare, who writes a column for the Democrat and Chronicle, based in Rochester, N.Y., wrote that many caregivers, at the listening event he attended, told wrenching stories of their fight to care for their loved one. The caregivers come to show their faces, share their stories, and tell government officials that they need assistance to help their loved ones battle Alzheimer’s disease. Government officials are holding the town hall meetings to collect data and personal stories as the U.S. begins to develop a national plan to address the pending Alzheimer’s disease epidemic. During the event held at Nazareth College, aging spouses, who serve as primary caregivers, told of their struggles to keep a wife or husband with Alzheimer’s at home, Hare wrote. Other caregivers related tales of trying to get assistance, but were told their loved ones were not old enough to take advantage of the services available in their communities. While the government officials may not have heard some of their stories, family members have first-hand experience at trying to find affordable care and knowledgeable facilities for patients with Alzheimer’s. At the town hall meetings, these caregivers are expressing their frustration at being turned away, not meeting all the requirements or lacking the monies to pay for expenses to provide a comfortable life for their loved one. An estimated 5.4 million patients are living with Alzheimer’s disease, according to a report by the Alzheimer’s Association. By 2050, most health care experts predict that nearly 16 million Americans will suffer from the condition. The objective of the NAPA project is to create a government entity that coordinates the country’s approach to research, treatment, and caregiving. One of the overall goals of the act is to speed up the development process of treatments designed to prevent, stop or reverse the course of Alzheimer’s disease.

Read the complete article by clicking here

Teaching healthcare providers how to interact with Alzheimer’s patients

As a teenager, you may remember going to the doctor’s office and noted that the doctor never said a word to you. Your doctor may have greeted you, but after that slight interaction, everything was directed to your parents. Some patients with Alzheimer’s feel the same way, and that upsets them. In a piece for The Alzheimer’s Reading Room, Cindy Keith writes that some healthcare professionals may need some practical education. Keith, an author and nationally renowned speaker, believes that caregivers should provide some education to healthcare providers who do not freely interact with patients with Alzheimer’s. Even though patients in the latter stages of the disease may not be able to form intelligible sentences, they still know when they are being treated like a child, the author wrote. As a reminder to caregivers, Keith says it is always good to give patients with Alzheimer’s the illusion of control. The illusion gives patients a sense of purpose and a concrete example that you are still conscious of their concerns and needs. The writer offers some suggestions on how to mange a situation where the healthcare professional does not seem to know how to interact with patients with Alzheimer’s. The caregiver should don a new hat that says, “Teacher,” and remain pleasant at all times when interacting with healthcare providers. First, the caregiver should gently tell the doctor or nurse to speak directly to your loved one if they are ignoring them and addressing all comments and questions to you. Since the caregiver is generally there with the patient and doctor, the caregiver can always request a private meeting with the doctor to discuss sensitive issues. Like many people with an ailment, patients with Alzheimer’s do not need to be reminded of that fact during each visit. Make sure you reiterate this to the staff and suggest some alternative words that are more appealing to your loved one. Other suggestions include injecting some humor into the visit, reminding the healthcare provider to always tell your loved one something positive, and giving the patient the illusion of control over some decisions. For receptive healthcare staff, thank them when they get it right, Keith wrote. To have a more productive appointment, Keith says you can prepare the office for your loved one’s visit by letting them know in advance a few things about your patient with Alzheimer’s. If your attempts at making the visit more beneficial to the loved one has no effect, Keith says caregivers should let the office know exactly why you are choosing to seek care elsewhere. The whole goal of these suggestions is to improve the relationship among healthcare staff, the family, and the patient. When the patient with Alzheimer’s leaves the office, they should feel calm and somewhat relaxed, not angry and upset.

Read the complete article by clicking here

Transitions from nursing homes to hospitals often ‘burdensome’ for Alzheimer’s patients

Once a person with Alzheimer’s reaches the end stages of the disease, keeping them on some sort of routine is one of the best things to do. However, with the disease and advanced age, some patients with Alzheimer’s may need some type of hospitalization, which could interrupt any schedule. A study by a team of researchers, from Brown University’s Warren Alpert Medical School, found that one-in-five patients with advanced Alzheimer’s, or other forms of severe dementia, will be shuttled from a nursing home to a hospital during the last few months of life. The study, lead by Dr. Joan Teno, a professor of health services, policy and practice, examined Medicare data from 2000 through 2007, reporter Serena Gordon wrote for HealthDay. The review looked at the records of nearly 475,000 patients with advanced mental and functional impairments who were in a nursing home at least 120 days before their deaths, Gordon wrote. If the hospitalization occurred in the last three days of life, if patients were sent to a different nursing home after hospitalization or if there were multiple hospitalizations during the last 90 days of life, the researchers classified these types of transitions as “burdensome.” These were people who had really advanced cognitive impairment and really impaired functional living; they could not perform normal tasks of daily living, Teno said. The study also found that the poorest areas of the country had higher rates of burdensome transitions and higher rates of poorer outcomes. Teno said she could achieve better outcomes by treating patients in the nursing home instead of providing treatment in a hospital. She tied the burdensome transitions, and poorer outcomes, to patients that are distressed due to a break in their routines. Payment from Medicare and Medicaid to nursing homes and hospitals contribute to burdensome transitions by offering additional incentives for patients who have been hospitalized, the study found. Dr. Joseph Ouslander, a professor and senior associate dean for geriatric programs at the Charles E. Schmidt College of Medicine at Florida Atlantic University, feels that patients and family members should be aware of the substantial risks of hospitalization. He believes the only way to combat the payment system is to reform the current laws on the books. But Teno offers a more simplified way. She said families could request a “Do not hospitalize” order, which prevents nursing homes from automatically sending a patient to the hospital without consulting with the family.

Read the complete article by clicking here

Compensating the caregiver: What’s a caregiver worth?

Not everyone is willing to take on the role of caregiver, but anyone should be able to recognize the work and worth of a caregiver. A reader of Annie’s Mailbox, the syndicated advice column written by the editors of the “Ask Ann Landers” column, believes her family members do not value the job accomplished by a primary caregiver. The reader’s mother is a 93-year-old with Alzheimer’s disease. The reader’s son is the primary caregiver for his grandmother. The reader is at odds with her two sisters, believing the sister that controls their mother’s checkbox should compensate the grandson with a monthly wage. Caregiving is a full-time job, so the grandson does not have the time to work outside the house. Without a source of income, the grandson is one of thousands of unpaid caregivers who take on the responsibility out of love and commitment. The sister handling the money decided on a wage of $250 a month. That sent the reader’s blood boiling and she told her sister he needed a raise. The sister reluctantly agreed to give the grandson $500 a month. The reader also stated that her sisters have never spent a night in their mother’s house, so they have no idea of how the grandson cares for his grandmother. The whole mess is a source of friction among the sisters. The reader wrote to seek advice from the writers of Annie’s Mailbox, Kathy Mitchell and Marcy Sugar. The authors commended the reader’s son, but reminder her that grudges and resentfulness solves nothing. They suggested she contact a few companies in her Mom’s area to find out the average wage of a paid caregiver. Then, after gaining this information, she should present it to her sisters so they have a better understanding of the value of the job. Whether they decide to pay more money or not, the authors said her sisters can make it up to him by being more appreciative of his contributions.

Read the complete article by clicking here

While everyone hopes for a scientific breakthrough that will cure Alzheimer’s disease, a cure will never come into existence without help from the average citizen. Scientists will never know whether Alzheimer’s drugs serve their purpose without people who volunteer to become subjects in clinical trials. Elizabeth Landau, a health writer and producer for CNN, authored a piece that centers on a volunteer, who suffers from mild cognitive impairment (MCI). The article also delivers some information about participating in clinical trials. It is hard for Phil Kreitner, age 71, to get the life lessons drummed into him by his father out of his head. His father died from complications of Alzheimer’s, but during the elder Kreitner’s 12-year battle with the disease, only once did he acknowledge that he was suffering from memory loss. Phil Kreitner vows he will never end up in a nursing home, but he admits that he does suffer from memory problems. His father taught him that each person has a responsibility to the collective and that no man is an island, Landau wrote. It is that attitude that compelled Kreitner to participate in a clinical trial that investigates a drug for patients with MCI. Landau uses her subject to provide some details about clinical trials. Not many people are game to enroll in a trial, and if they do, they want assurances that they will receive the experimental drug. That is not how researchers test their medicines and the typical standard for scientifically valid medical analyses are “double-blind” studies. In double-blind studies, no one, including the researchers, knows who is getting the actual drug. That actuality is fine for Kreitner, he just wants to do his part and help others. For patients suffering from MCI, it is not certain whether they will develop Alzheimer’s disease. Kreitner is not sure what the future holds for him, but he set a goal to write a book, or at least a 1,500-word article, on his views of the world that will get his “fellow humans to start thinking like a species.”

Read the complete article by clicking here

Caregivers should recognize the fine line between independence and safety

Caregivers assisting patients with Alzheimer’s disease not only help them with the activities associated with daily living, they also have to keep their loved ones safe from harm. A few years after a diagnosis of Alzheimer’s disease, it may be fine to leave a loved one in the car or on a bench while the primary caregiver runs into a store to shop. However, as the disease advances and affects more of a person’s cognition, the situation may call for some adjustments. Dotty St. Amand, a columnist and the executive director of the Alvin A. Dubin Alzheimer’s Resource Center in Fort Myers, Fla., writes that it is important to acknowledge changes in a love one’s judgment as memory impairment progresses. To ensure safety, we must make appropriate accommodations, she said. Since many caregivers are spouses or other family members, they want to allow their loved one to have as much freedom and independence as possible, but safety should always be a concern. As Alzheimer’s progresses along its course, caregivers need to note how the progression affects their loved one. While it may be fine on most days to leave the loved one on the bench, there is always the risk that the next time will not be such a good day for your loved one in terms of orientation, judgment, and short-term memory, Amand wrote. This presents a suitable time for caregivers to initiate adjustments that mirror the changes occurring in the patient with Alzheimer’s disease. As Alzheimer’s marches on in its progression, patients may need more cuing and increased supervision to perform or participate in routine tasks, Amand wrote. To facilitate these changes, caregivers should be aware of their loved one’s condition, strategize to eliminate some issues, and adjust their expectations. While treating their loved one with respect and dignity is a primary concern, keeping them safe should always be a top priority.

Read the complete article by clicking here

In spite of Alzheimer’s, daughter still sees her mother’s light

Alzheimer’s disease is a progressive condition that gradually erodes an individual’s cognitive function, but also changes the way others, including family members, see the loved one with the disease. Columnist Donna Douglas writes that Alzheimer’s starts slowly for some patients, while for other patients its starts suddenly and progresses quickly, forcing its presence onto previously bright people. Douglas, who provides a variety of services as a business consultant to a broad spectrum of clients, says Alzheimer’s has not dimmed her mother’s light. Her mother is living with Alzheimer’s, but the condition has changed things a bit. Looking back, Douglas says she cannot remember when her mother stopped calling her on the telephone. But it happened. For nine years, Douglas’ sister served as the primary caregiver. At first, their mother lived in a lower level apartment on the first floor, right under the sister and her husband. Family members set up a complete workshop with tools and a workbench. Douglas was happy with the reports from her sister that told of hearing the radio and a sander in full operation at the same time. Over time, sounds from the sander ceased, leaving Douglas to wonder when her mother last built something. Douglas’ sister moved their mother into a single room next to her and her husband’s. At the start of the column, Douglas, her first husband, and her sister were taking their mother to a long-term care home. Near the end of the drive, a tear settled on her mother’s left cheek. Their mother asked: Do I have to live there? Douglas held her composure and answered: This has to work for all of us. To lessen the stress of the move, Douglas and her family members brought many of her mother’s things to her new home. In her room, they set up her stuff in the exact same way she left it in the room next to her daughter’s. Their efforts produced a joyful expression in their mother. It was as if she had always lived there, Douglas wrote. It seemed as if Douglas saw her mother’s light once again.

Read the complete article by clicking here

Announcements of AD diagnoses may empower others to continue their employment

The announcements by Pat Summitt and Glenn Campbell that acknowledged their diagnosis of Alzheimer’s disease was a tough thing to do for someone in the spotlight. While they acknowledged the condition is having some effects, both said they would carry on with their duties. Andrea Kay, a career consultant and author, tells us that the decision to continue their careers is a good thing. When people stop being productive in some fashion, it is hard on them, and it is probably not good for what happens in the disease, said Susan Gilster, the executive director of The Alois Alzheimer Center in Cincinnati. As a coach, Summitt may have a few more people helping her, while Campbell might add a few more cue cards around the stage. The way they used to work will change; their roles may be somewhat limited or morph into something very new. However, is it OK for anyone diagnosed with Alzheimer’s to continue working at his or her job? Kay also wonders if it is even wise to tell your employer that you have been diagnosed with Alzheimer’s. Much like two individuals, no two jobs are the same. If you hold a job that involves making decisions that affect other people’s lives, you should probably step down, Gilster said. The symptoms of mild cognitive impairment and Alzheimer’s occur slowly over time, so they probably would not be that noticeable at first. Gilster said she has seen some people maintain their ability to do their jobs well into the disease. After a while, little mistakes are noticed, but some colleagues may pitch in to make sure things are proceeding smoothly. If an employee decides to announce his diagnosis, others will have to allow for behavioral changes, such as taking longer to accomplish a task, Kay wrote. As the disease progresses, the employee will have to ask him or herself whether they can still do the job. With role models like Campbell and Summitt, the path forward contains the footprints of some worthy trailblazers.

Read the complete article by clicking here

If it eases the process, it is OK for a caregiver to lie

Our parents always taught us to be honest. You have lived that lesson throughout your life, but now it may be time to set that lesson aside. That is the gist of the latest post by Bob DeMarco on his Alzheimer’s Reading Room Web site. In order to get their loved ones with Alzheimer’s disease to do something, DeMarco told his readers it was OK to lie. One of his regular readers, Jocelyn, wrote that she could lie to him, but she could not bring herself to do that. Jocelyn was trying everything to get her loved one, Paul, to take a shower. She thought of lying, telling Paul that they were going to Wellington, a place he apparently loves, as a way to get him to shower. Maybe her resistance to lying stems from guilt or the fact that she knows they are not going to Wellington. It is not known why people with Alzheimer’s dislike taking showers, but DeMarco says it is probably because of the changes that the disease causes in their brains. Once the disease advances, it is not wise to try to force the person with Alzheimer’s to think as if they were of sound mind, he wrote. DeMarco says that living with dementia requires a new way of thinking and that the caregiver is now a resident of “Alzheimer’s World.” In “Alzheimer’s World” it is OK to lie, he wrote. In that world the key is doing what is best for the person living with Alzheimer’s, he wrote. With additional advice, DeMarco said doing what is in the best interest of a person living with Alzheimer’s always trumps the means we use to get them to do it. Jocelyn knows that Paul will probably forget all about Wellington by the time he finishes his shower. DeMarco said you could reward your loved one with a big kiss after the shower and a bowl of ice cream, if you do not keep your, uh, “promise.”

Read the complete article by clicking here

Experiences as a caregiver developed into maxims for others

Most family caregivers do not seek the role and many of them probably have no idea about the breadth of responsibility the duty calls for. When her mother needed her, Mynga Futrell, a family caregiver and a former professor who taught science at Sacramento State, moved herself and her husband from California to Kentucky to answer the plea. Reporter Rachael Riggs, in a piece for the Times-Standard, uses a presentation by Futrell to narrate the caregiver’s experiences and highlight what she learned as maxims for other caregivers. “Caregiving is a life interrupted” is how Futrell describes her experience. Alzheimer’s is a downhill trip for your loved one; you cannot let it take you down, too, Futrell said. From acquiring more information about Alzheimer’s and referring to her mother’s life experiences, Futrell learned how to manage the challenges that caring for someone with Alzheimer’s faces, Riggs wrote. Some of what she learned required Futrell to change herself, so she went from being her mother’s daughter to her mother’s friend. She eventually started calling her mother by her first name, Hazel. From her training and the experience she gained, Futrell shared nine maxims during her presentation. To summarize a few of them, Futrell says a caregiver’s work is never done; when truth and kindness conflict, choose kindness; cleanliness is next to “__________”; what is good for the goose is good for the gander; and do not sweat the small stuff. Actions speak louder than words, is one of her first maxims. Before caregivers approach their loved one, take a moment to do a quick examination to see how they present themselves, Futrell said. Her third maxim reminds us that compassion starts at home. Although being a caregiver can be exhausting, try to always hold compassion in your heart for your loved one, she said. In another truism, Futrell asks, “Is honesty the best policy?” No she says, creativity and inventiveness are. Another maxim advises us: Do not put off until tomorrow what you can do [better] today. Here Futrell wants us to consider asking for outside help before it is too late. Riggs adds a few more maxims that should help caregivers manage their responsibilities.

Read the complete article by clicking here

Pat Summitt’s disclosure that she has early-onset Alzheimer’s disease is raising awareness about the lesser-known form of Alzheimer’s.  With the start of the semester and daily basketball practices just around the corner, the coach of the University of Tennessee Lady Volunteers struggled with the decision to go public with her diagnosis.  Reporter Jenifer Goodwin used Summitt’s announcement as a primer to shed light on early-onset Alzheimer’s in an article for HealthDay.  People familiar with Alzheimer’s disease generally know symptoms of the condition usually start after age 65.  The early-onset form of the disease develops before the age of 65 and even afflicts some people in their 30s and 40s.  More than 5 million people in the U.S. are living with Alzheimer’s disease.  Part of that number includes 500,000 Americans, or about 5 percent of the total number of cases, who have early-onset Alzheimer’s disease, said Dr. Zoe Arvanitakis, a neurologist at the Alzheimer’s Disease Center at Rush University Medical Center in Chicago.  A diagnosis of Alzheimer’s is devastating for anyone, but it may be a bigger blow for younger patients who are in the mid-point of their careers, raising families, and paying off the mortgage.  Goodwin also points out that health experts say early-onset Alzheimer’s progresses faster than the late-onset form of the disease.  For older patients, it takes about 10 to 15 years after symptoms first appear before an individual would lose so much of their mental abilities that they are truly disabled, said Dr. Gary Kennedy, who is the director of the division of geriatric psychiatry at Montefiore Medical Center.  For younger patients, the time to disability is usually around five years, he said.  Scientists are unsure what causes the development of early-onset Alzheimer’s, but they note that gene mutations and family history can play a role, Goodwin wrote.  As awareness of Alzheimer’s disease rises, there is more help for those with early-onset Alzheimer’s.  Patients with early-onset Alzheimer’s can take advantage of a federal law that allows them to receive Social Security disability insurance and supplemental security income more easily, Arvanitakis said.  While her diagnosis is now public, the 59-year-old Summitt intends to continue her tenure as head coach for three more years.  Goodwin cites a Washington Post article in which Summitt said she told her players about the diagnosis.  I just want them to understand that this is what I am going through, but you do not quit living, Summitt said, you keep going.  With eight national championships under her tutelage, Alzheimer’s is in for a tough fight.

Read the complete article by clicking here

The thought caregivers want to take back

When the pain becomes too much to bear, sometimes a surprising thought pops up, however so fleetingly. It happened to Paul Harasim.  He serves as the family caregiver to his 88-year-old mother.  His mother has battled Alzheimer’s for a couple of years and now she is in the latter stages of the condition.  One day while visiting her in the care facility where she resides, Harasim noticed his mother’s blank stare.  He remembered she said she would rather be dead than go through a slow, agonizing passing.  The blank stare that becomes more of who she is each day cries out that she is helpless in this world, wrote Harasim, a columnist and medical reporter for the Las Vegas Review-Journal.  This may have been when Harasim thought that his mother would be better off dead.  Of course, he does not mean it, and he begs for forgiveness.  He notes that a loved one’s Alzheimer’s disease can mess with the caregiver’s mind as well.  In Las Vegas, residents in the vicinity seek help at the Cleveland Clinic Lou Ruvo Center for Brain Health, Harasim wrote.  The clinic offers free support groups and psychotherapy sessions to family members with loved ones stricken with Alzheimer’s.  The round-the-clock caregiving that Jean Georges provided to her husband caused her to suffer a stress-induced heart attack.  She said she wishes the clinic was there to help her while she cared for her husband.  Georges said she learned a golden rule to avoid arguing with patients with Alzheimer’s.  She regrets the time she spent arguing with her husband and understands that his reality was different from hers.  Harasim knows that if his thought came true, he would miss cherished moments that are still occurring despite his mother’s condition.  About six months ago, he heard his mother talking.  She mistook him for his father, but her talk centered on her son.  She said she thought he was going to be OK, after he had moved to Las Vegas.  She said she does not think her son gambles, so they did something right when they raised him.

Read the complete article by clicking here

Learn to safeguard the finances of your loved one with Alzheimer’s

When a caregiver accepts the responsibility of caring for someone with Alzheimer’s disease, that also means they will do what they can to protect their loved one.  After a period of time, the caregiver will realize that protection will include many aspects of the patient with Alzheimer’s life, including financial matters.  One of the early symptoms of memory loss includes the loss of the ability to handle finances.  Gary Joseph LeBlanc, who writes a syndicated column called “Common Sense Caregiving,” addresses the topic of Alzheimer’s and finances.  LeBlanc, who served as the primary caregiver of his father for a decade, said he knew something was wrong when he recognized that his father was having trouble with daily finances.  His father had a reputation of doing complex math equations in his head, LeBlanc wrote.  The writer suggests checking bank and credit card statements for excessive purchases, looking for stacks of unopened mail or watching for trouble counting change as signs that may show difficulty in handling finances.  LeBlanc said that sometimes caregivers or other family members do not realize the degree of the problem until a large amount of debt has already accumulated.  Caregivers also have to be alert for calls from telemarketers and scammers, who are simply trying to rip off your loved one.  For these types of thieves, caregivers should check for large numbers of packages being delivered, sudden changes in back account balances, and overdue bill notices.  To safeguard your loved one, LeBlanc recommends attempting to re-route your loved one’s mail to a post office box to allow the caregiver to take a first-hand look at the patient’s finances.  One tip he suggests is to swap out your loved ones credit cards with a pre-paid card and give them only small amounts of cash.  LeBlanc said he always made sure his father had money in his pocket, which helped his dad feel more independent.  His suggestions are good preventive measures, but what if your loved one has already gotten into major financial problems?  Request a copy of a free credit report with your loved one’s name on it and investigate whether your loved one signed up for credit card insurance.  Caregivers should also obtain a letter from the loved one’s doctor, stating they are permanently disabled from Alzheimer’s. The letter should state approximately when their symptoms began, LeBlanc wrote.  If your loved one is a resident of a nursing home, get the administration to write a letter verifying that they are now under their care.  These documents will serve to help your case if you have to appear in court.  If a court case is necessary to arrive at a settlement, seek advice from an elder law attorney.  LeBlanc says that paying for his advice may save you in the end.  His last guidance is have a trustworthy person appointed as durable power of attorney shortly after a diagnosis of Alzheimer’s.  Caregivers will receive more protection by placing P.O.A. (power of attorney) at the end of their signature, when they sign something on their loved one’s behalf.

Read the complete article by clicking here

Fight caregiver isolation by staying connected to family members and friends

From marriage vows to family commitments, family caregivers strive to take care of their loved ones even if they have to do everything themselves.  The responsibility of being a loved one’s primary caregiver takes a lot of love, understanding, and time.  Doing all you can to care for a loved one often results in social isolation, resulting in caregivers losing their social connections to friends and family members who live great distances away.  Lisa M. Petsche, a freelance writer who specializes in family life and elder care, says an effective caregiver is one that stays connected socially.  Once a person begins to feel isolated, they may experience bouts of loneliness and depression.  Petsche, writing in an article published in the Catholic San Francisco, proposes some ways to prevent or overcome isolation and avoid caregiver burnout.  Her first suggestion involves a little assertiveness on the caregiver’s part.  Petsche says take the initiative and invite friends over; do not wait for them to call or drop in.  In a similar fashion, ask family members to help share some of the duties that help the patient with Alzheimer’s and the caregiver.  If an offer of help comes along, caregivers should accept the offer instead of believing they can do it all themselves.  Phone calls, email or letters are another way to stay in touch with out-of-area loved ones.  Petsche recommended getting a portable phone to keep the conversation going while still completing some tasks while you socialize.  Her other suggestions involve getting out of the house to enjoy your social circle.  Caregivers can join a support group to talk with other caregivers who are in a similar situation and share tips or just shoot the breeze.  To gain some personal time, Petsche recommends caregivers consider in-home respite or adult day care programs.  While caregivers do have a “million things to do,” they must stay connected to family members and friends to preserve their well being and health to assist their loved one with Alzheimer’s.

Read the complete article by clicking here

Selecting the right music can soothe your loved one with Alzheimer’s disease

An article by Leann Reynolds, on the Huffington Post Web site, discusses music therapy for patients with Alzheimer’s disease and gives some insight on how to employ it.  To gain a soothing effect from your selections, Reynolds interviewed a few sources that recommend caregivers play music that produces a familiar connection to your loved one.  Then, the caregiver must reduce other sensory stimulation from distracting noises to allow patients with Alzheimer’s disease to fully enjoy the music, said Martha Tierney of the Alzheimer’s Association.  Alzheimer’s disease greatly affects a person’s short-term memory, but their long-term memory remains largely intact, Tierney said.  That explains why people with Alzheimer’s disease savor music that was popular when they much younger.  Reynolds, who serves as the president of Homewatch CareGivers, opened her article by telling readers about Celia Pomerantz and her mother, who died from Alzheimer’s disease at age 78.  The daughter shared her mother’s history of cultural music and a love of dancing, which made it easier to get her mother to do the usual daily living activities.  After playing Spanish music, I could convince her to do anything – we would dance over to the shower or out to get a meal, Pomerantz said.  Because music speaks to a person’s feelings, there is no pressure to understand it and they can just experience it, Tierney said.  For those who wish to find out more about therapeutic music for patients with Alzheimer’s, Reynolds includes a link to the American Music Therapy Association.

Read the complete article by clicking here

Patients with dementia and caregivers differ on perceptions about care

No two people think exactly the same way, and that holds true for patients with Alzheimer’s disease and their caregivers.  A study by researchers at Penn State University found that caregivers do not understand the things that are important to their relatives with dementia.  The researchers contributed their findings to the perceptions that caregivers come to view their loved ones with dementia as unable to make their own decisions about daily life.  For the study, the research team interviewed 266 pairs of people.  Each pair consisted of a patient with mild to moderate dementia and a family member who served as the primary caregiver.  The person with dementia had to meet the requirement that they lived in his or her own home.  Each member of the pair underwent separate interviews by the research team, which was led by Steven Zarit, the study’s leader and a professor and head of the Department of Human Development and Family Studies at Penn State.  The questions focused on how much importance the subjects placed on five core values: autonomy, burden, control, family, and safety.  Our results demonstrate that adult children underestimate the importance that their relatives with dementia placed on all five core values, Zarit said.  He provided an example that supports the study’s conclusions.  While a loved one with dementia may feel it is very important to continue to attend family celebrations, their caregiver may feel otherwise.  While Alzheimer’s robs the brain of most of its cognitive function in the latter stages, Zarit reiterated that the patients with dementia in the study were capable of making decisions for themselves and could express their vales in a clear and direct way.  Zarit intends to expand his research by developing and evaluating techniques that will help improve communication between caregivers and their loved ones with dementia.

Read the complete article by clicking here

Thursday, July 22, marked the end of the Alzheimer’s Association International Conference held in Paris.  The weeklong forum gave researchers the opportunity to report on and discuss the groundbreaking research and information on the cause, diagnosis, treatment, and prevention of Alzheimer’s disease and related disorders.  Therefore, this edition of the ARF ALZHEIMER’S NEWSLETTER contains a number of articles covering announcements made at the conference.

– ARF Editor

A son urges families to get caregivers the help they need

With modern electronics, we constantly hear many adages, warnings, and solutions, but we do not think they apply to our lives.  Perhaps Jim Jones heard or read the cautionary tales about the life of an Alzheimer’s caregiver, but his understanding about the extent of his mother’s responsibility did not ring true to him.  Jones, in a piece for the Bradenton-Herald, expresses remorse over his mother’s death and wonders why he did not see it coming.  No one in Jones’ family had Alzheimer’s, but his stepfather did.  Like most families dealing with Alzheimer’s, family members who do not live in the immediate vicinity of the loved one often miss the progression of the disease.  Jones knew his stepfather, Harry, experienced simple forgetfulness and knew that his mother was taking care of him.  Jones lived about three hours’ drive from his mother, who was a resident of Bradenton, Fla.  During one of his weekly visits, he noticed that Harry’s condition was much worse.  Jones described his mother as one who never complained.  As Alzheimer’s progressed, Harry got worse, and Jones’ mother worked even harder to take care of her husband, but she neglected to take care of herself.  It was too late when it finally dawned on Jones, and his siblings, that his mother needed help caring for Harry.  She suddenly fell catastrophically ill and died within weeks, wrote Jones, who serves as the newspaper’s East Manatee editor and a columnist.  He wrote that he will never get that load of guilt off his back that he and his sisters did not see what was coming earlier, and did not do more to head it off.  Sometimes the mantra that reminds caregivers to take care of themselves washes right over them.  Jones knows that what happened to his family is not unique in the realm of families battling Alzheimer’s.  He is sharing his story to persuade family members to look at those who serve as caregivers to patients with Alzheimer’s and see if the family caregiver can use some help, before it is too late.

Read the complete article by clicking here

Alzheimer’s risk increases if other family members have the disease

Since there is no known way to prevent the development of Alzheimer’s disease, some people were asked whether they would want to undergo testing to find out their status.  For some, the question may seem rhetorical, but the answer is all too evident for some families.  An article in USAToday updates us on the status of Bob Blackwell.  The newspaper has followed Blackwell since 2008.  Blackwell was diagnosed with Alzheimer’s at age 64, about five years ago.  In the piece, Blackwell, and his wife Carol, visit his 97-year-old mother at the nursing home she has lived in over the last seven years.  Carolyn, his mother, has lived with Alzheimer’s for the past 21 years.  While Bob attends to her, Carol may envision herself doing the same thing for Bob in the near future.  Statistics in the article say the average person has a 1 in 10 risk of developing Alzheimer’s.  By age 65, that risk increases to 2 percent to 5 percent and after age 65 the risk doubles every five years, said Scott Turner, the director of the Memory Disorders Program at Georgetown University Medical Center.  If one parent or sibling is affected, the risk doubles, he said.  While caring for one person with Alzheimer’s can devastate a family, the impact is even more profound where more than one member has the disease, said Beth Kallmyer, senior director of Constituent Services for the Alzheimer’s Association.  The only way to see some good in this situation is that a family’s familiarity with dementia and its symptoms will allow them to note the onset of the disease.  The early detection will give a family more time to prepare financially and seek out support, Kallmyer said.  That same familiarity with dementia can also raise stress and anxiety levels.  When you have someone who has seen it in a parent, and then their spouse is diagnosed, there is a big emotional adjustment, Kallmyer said.  If one member of a family is battling Alzheimer’s, that does not necessarily mean that any of the remaining members of the family will develop the condition as well.  The majority of the population will never develop Alzheimer’s, even if a parent has it, said Gary Kennedy, the director of the division of Geriatric Psychiatry at Montefiore Medical Center.  Jennifer Blackwell, Bob and Carol’s 39-year-old daughter, says she has thought about the question of “What if that’s me one day?”  However, her current focus is on the changes her dad is going through and the impact it puts on her mother.

Read the complete article by clicking here

Early-stage Alzheimer’s patients want to be defined by their remaining abilities

With help from Alzheimer’s advocates, more Americans can recall some facts about Alzheimer’s disease, but most of their information concerns the latter stages of the condition.  While an increased number of people with early-stage Alzheimer’s share their stories, this group of patients with Alzheimer’s wants to stay engaged with living their lives.  Dr. Peter Reed, a public health gerontologist and the executive director of the Pioneer Network, says people with early-stage Alzheimer’s want to be defined by their remaining abilities, not by their memory loss or functional decline.  This type of approach could prove beneficial, as increases of early-stage Alzheimer’s cases will likely occur in light of the pending Alzheimer’s epidemic, Reed wrote in an article as a guest columnist in the Senior Spectrum.  He cites improvements in screening and early detection as techniques that will lead to increases in number of the early-stage cases.  If these improvements are added to a promising disease-modifying treatment that slows the progression of Alzheimer’s, the Alzheimer’s community should adjust its support approach, Reed said.  The goal of the new approach would shift to offering support that allows people to remain active, vibrant members of the community and enable them to live a meaningful life.  Reed developed his beliefs after working with the Alzheimer’s Association.  With that organization, he traveled the country for a series of town hall meetings where he heard over 300 people with early-stage Alzheimer’s give their perspectives on living with the condition.  The top three issues discussed concerned fighting the stigma of Alzheimer’s, remaining engaged in daily life, and staying involved and making a difference.  When concerns about the stigma of Alzheimer’s arose, most people at the meetings said they wanted people to know they are living with Alzheimer’s, not dying from it.  While they know their functional abilities are declining, they want to be included in decision making and planning for the future.  When people with Alzheimer’s can stay involved, they are less likely to be defined by their symptoms, Reed wrote.  The writer says that listening to people affected by an illness is a common practice for researchers, but many in the scientific community feel people with Alzheimer’s cannot contribute a valid opinion.  After listening to the people who attended the town hall meetings, Reed feels the scientific community is way off base with its perception.  People with Alzheimer’s do retain many abilities as well as their personhood; they want to remain as independent as possible, and they seek ways to contribute to the world around them, he wrote.

Read the complete article by clicking here

Adult day services reduce caregiver stress; improve behavior of Alzheimer’s patients

A weekly trip to an adult day care service can be a real godsend for caregivers of patients with Alzheimer’s disease.  The respite can also help reduce stress levels of family caregivers, according to a joint study by researchers at the Pennsylvania State University and Virginia Tech.  For patients with Alzheimer’s, the study found that those who attend adult day care services have fewer behavior problems and sleep better at night.  The researchers had a cohort of 150 caregivers who served as the primary caregiver to older patients with Alzheimer’s.  The caregivers kept a 24-hour daily diary that allowed the researchers to evaluate the caregivers’ stress levels.  The diary assessed the period before the use of an adult day care service.  Once the study started, the caregivers continued maintaining their dairies, making notations on days when their loved one attended an adult day care session or when the patient stayed at home.  The notations covered the moods of the caregiver and the moods of the patients, including the number of sleep disturbances, and states of agitation and restlessness.  Conclusions from the study found that caregivers had higher levels of stress on the days before the use of adult day care services and on days when their loved ones stayed home.  The changes we have seen are as large as you would get with medication, but with no side effects, said Steven Zarit, professor and head, department of human development and family studies, Penn State.

Read the complete article by clicking here

New autopsy guidelines will classify cause of death in Alzheimer’s cases

A proposal for new guidelines, covering autopsies of the brains of people with Alzheimer’s disease, will provide more details about how the condition affected the brain.  The National Institute on Aging and the Alzheimer’s Association announced the proposed guidelines at the Alzheimer’s Association International Conference, according to an article by Julie Steenhuysen, a medical writer for Reuters.  The goal of the guidelines is to distinguish between the memory changes or dementia diagnosed by a doctor when the person was alive and the changes in the brain observed during an autopsy.  Currently, the definitive way to confirm a person had Alzheimer’s is to examine the brain during an autopsy, even though a person may have been diagnosed or had obvious symptoms of the disease.  While conducting the procedure, the pathologist is looking for signs of the beta amyloid and tau proteins that are hallmarks of Alzheimer’s disease.  However, an examination of the brains of people with normal cognition has also shown signs of plaques and tangles.  Under the proposed guidelines, patients with memory problems caused by the disease will be diagnosed with Alzheimer’s dementia, Steenhuysen wrote.  Patients with less severe cases of cognitive function will be classified as mild cognitive impairment due to Alzheimer’s dementia.  Dementia can be caused by many diseases, including vascular disease, so it is important to be clear about what is causing the problem, said Dr. Creighton Phelps of the National Institute on Aging’s division of neuroscience.  Under the new guidelines, pathologists receive more detail about how to test human brains at autopsy, learn which tests to perform, and now must quantify the amount of plaques in the brain.  The new autopsy guidelines follow new diagnostic criteria announced earlier this year that helps doctors classify patients who are tested for signs of dementia.

Read the complete article by clicking here

10 tips to consider if you serve as primary caregiver to your elderly parents

In his latest blog posting, Philip Moeller writes that caring for an aging parent may be the highest calling of your life, but admits there are some pitfalls when you take on a responsibility of that magnitude.  Some of the personal sacrifices made include loss of personal time, money, and your own experiences.  Moeller, a contributing editor for U.S. News & World Report, provides 10 tips to help adult children cope with the financial stresses of caregiving.  A study by Mature Market Institute (MMI), the aging and retirement research unit of MetLife, serves as the foundation for the tips.  Currently, about 10 million adult children over age 50 care for elderly parents, according to estimates from MetLife.  Among the statistics, in 2008, 17 percent of men and 28 percent of women assisted their parents with such tasks as dressing, feeding, and bathing.  In addition to other personal care needs, adult children help with trips to the grocery store, shopping, and medical appointments.  However, the biggest consideration to weigh when helping your parents involves financial matters.  The first three tips concern money and benefits.  Moeller wrote that adult children should think very carefully before quitting a job to help a parent.  If you resign, you may have more time to spend with your loved one, but what about loss of income and damage to your retirement savings.  If you elect to resign, how could you replace policies that cover employee disability, life insurance, and long-term care insurance?  Without a constant stream of income, a caregiving budget becomes even more important.  Before you quit, you may want to visit your employer’s human resources office to inquire about flex-time and family leave policies, Moeller wrote.  For the fourth tip, investigate Web sites to help find free or low-cost public benefits to assist with your caregiving duties.  While we know that navigating Medicare and Medicaid can be difficult, the fifth tip recommends we learn more about these programs to help save money and provide other sources of support.  The sixth tip concerns “aging-in-place.”  That is when your parents tell you they want to grow old in their own home.  Moeller suggests you learn about the costs of keeping your parent in their home.  Hiring a geriatric-care manager might be the best course of action for elderly parents with needs that are more challenging and extensive.  So, the seventh tip recommends considering professional help.  For the eighth tip, make sure you insulate your parents from becoming prey for scammers.  You may need to read up on the topic, but you can educate yourself and protect your parents from making hasty, poor, and expensive financial decisions.  In the next to last tip, the recommendation is to have a heart-to-heart conversation with your parents to carry out their wishes with the legal backing of most common documents: power of attorney, health-care proxy (medical power of attorney), and an advance health care directive.  The last tip focuses on the adult child’s plan for the future.  The sibling who serves as caregiver to parents should make their own retirement plan, Moeller wrote.  While you are taking care of one or both your parents, you still need to take care of yourself.

Read the complete article by clicking here

Family does everything right when caring for their mother

The Calter family did every perfectly when it came to caring for their mother.  Kay Calter, the matriarch of the family, was diagnosed with Alzheimer’s disease at age 71.  Her daughter knew there was a problem when Kay tried to leave home at 1:30 a.m. while dressed in a nightgown, wrote Marie Fricker for WickedLocal.com.  After Kay rapidly lost weight and began to forget to eat or take her medicine, the Calter siblings decided to provide round-the-clock care.  Since Kay’s husband died years ago, the Calter children – four sisters and two brothers – made the decision to share the responsibility and to provide care for their mother in her own home.  Julie Schales, one of the four sisters, took on the role of primary caregiver for seven and a half years until their mother died at age 78.  Alzheimer’s not only inflicts tremendous suffering on the victim, but also takes a huge toll on the caregivers, who must lose their loved ones emotionally long before their hearts stop beating, Schales said.  The family gathered to discuss and create a plan of action while Kay was still cognizant and communicative, said state Rep. Tom Calter, one of the two brothers.  The family decided to use Aricept, a drug developed to help slow the decline of overall function in people with Alzheimer’s disease.  Kay was on the drug for two years, which slowed the progression of dementia for her, Fricker wrote.  But eventually Kay lost all of her short-term memory and most of her physical abilities.  Patience is the quality most called for in the care and treatment of people with Alzheimer’s, Schales said.  She put that attitude into practice when her mother woke up at night and thought it was day.  She also realized the siblings’ tone would usually set the tone for her mother, so they used an upbeat approach.  Unlike many who suffer with Alzheimer’s, my mom was constantly supported by her closest family members, Rep. Calter said.

Read the complete article by clicking here

As the director of Help Unlimited, Leeana McNeilley knew a lot about Alzheimer’s disease, but she was not sure how it would affect her mother.  At Help Unlimited, McNeilley provides services to people who need assistance.  The organization’s personal care attendants, certified nurse aides, and home health aides offer a variety of services from personal care needs to transportation.  McNeilley thought her knowledge would make it easy to relate to her mother, help her father become a caregiver, and manage her mother’s changing mental abilities.  However, with all her experience and training, McNeilley, in a piece for Noozhawk (Santa Barbara, Calif.), admits that she was a little off base in her prediction.  The writer says she miscalculated the emotional component of communicating and working with someone with Alzheimer’s.  The customary mother-daughter relationship was one hurdle McNeilley needed to overcome when dealing with her mother.  In addition, after a lifetime of yielding to his wife, McNeilley’s father just tried to make his wife happy.  McNeilley wrote that her biggest issue was dealing with her mother’s reality.  While she knows not to try to reason with a person with Alzheimer’s, McNeilley felt it was disrespectful to allow her mother to exist in another reality.  Eventually, the writer learned that it was easier to enter her mother’s reality and join her life as it exists now rather than forcing actuality upon her.  McNeilley says her mother’s reality is certainly more interesting than the truth.  Her mother’s mind has now blended the experiences of her daughters’ experiences with her own.  These shadow memories and experiences are now a part of the Alzheimer’s journey.  The writer says the lesson she learned is to let go of her perceptions and help her mother enjoy the memories of the life she thinks she lived.  With that lesson in mind, McNeilley focuses on giving the best gift she can to her mother: helping preserve her mother’s dignity and her happiness.

Read the complete article by clicking here

Keep patients with Alzheimer’s cool during the summer

In parts of the country, the temperatures have been so hot this spring that it felt like late August, even though this week marked the official start to summer.  While many people love the hot, sticky weather, loved ones with Alzheimer’s disease are especially vulnerable to extreme heat.  Health advocates want to remind caregivers and family members to take precautions to protect their loved ones.  Cerna Healthcare, a company that provides home care and nursing services, offers a few tips to help keep patients with dementia safe and cool during the heat of the summer.  First, all elderly loved ones should be kept indoors in an air conditioned environment or at least a room ventilated with fans.  Second, review the senior’s medications to learn of any reactions that occur when exposed to heat or changes in body temperature.  Third, for seniors that exercise, try to avoid the hottest time of the day.  If there is no space to exercise indoors, try to do it during the earliest part of the day or late afternoon.  The fourth tip reminds us to keep your loved ones hydrated.  In addition to the heat, some medications may require more water, so encourage your seniors to drink water throughout the day.  For the last tip, try to persuade your loved ones to wear loose-fitting clothes with light fabrics to keep cool and comfortable.  These suggestions should serve as protection from the heat for older adults as well as loved ones with Alzheimer’s.

Read the complete article by clicking here

Do you have a hard time getting your loved one to shower?

Basic hygiene is a necessary part of being healthy.  Keeping a person with Alzheimer’s disease clean can be a real challenge for a caregiver.  Bob DeMarco, the founder of the Alzheimer’s Reading Room and the primary caregiver to his 94-year-old mother Dorothy, shares his method of getting his mother to take a shower.  In his piece, DeMarco uses humor, but he does not shy away from discussing the matter at hand.  And yes, he does address the fact that he has seen his mother completely nude many times.  He says that is not a problem for him and that you just have to think of your loved one as a giant baby.  DeMarco believes that patients with Alzheimer’s should take a shower every day.  His mother does, but he needed to devise a way to incorporate showering into their daily routine.  DeMarco’s first step involves positive reinforcement about the positive effects of being clean.  He takes a morning shower and then goes out to tell Dorothy how great he feels after getting nice and clean.  He lets her feel his clean-shaven face and see his wet hair.  All the while, he is expressing how great he feels and how it feels to be refreshed.  Their routine has Dorothy showering between 3 p.m. and 4 p.m.  To get her ready, DeMarco ensures his mother is in some bright light before and after her shower.  He does this because it puts her in a better mood.  While he has a routine and some suggestions, Dorothy is by no means skipping off to shower.  She still puts up some resistance and, at this point, DeMarco offers her potato chips as a reward after she finishes her shower.  He takes her by the hand and walks her toward the bathroom.  Sometimes he cleans her, while other times he watches from a distance as she cleans herself.  When she finishes, he dries her back.  In the article, DeMarco also answers some questions.  He says his mother is afraid of water and noted that she will not stand directly under the spray.  He believes water is invisible to most patients with Alzheimer’s and that makes them afraid of water.  Being a little anxious about getting in the water might make your loved one say “No” when it is time to bath or shower.  However, DeMarco summarizes the typical response from a patient with Alzheimer’s rather nicely.  He says even though you loved one told you “No,” it may not mean an emphatic no.  Caregivers should not get upset or start to argue with their loved one.  The “No” might mean that maybe you could convince the patient with Alzheimer’s or proceed with the task at a much slower pace, DeMarco said.

Read the complete article by clicking here

Letting go of negative thoughts makes a person a better caregiver

Angela Lunde received many comments from readers concerning the column she wrote on shadowing.  Among the responses, one reader asked her a question about the relationship between the patient with Alzheimer’s disease and their caregiver.  The patient asked Lunde: “What happens if the caregiver and the dementia patient do not have a loving relationship? How do both cope to live together?”  Lunde, who writes the Alzheimer’s Blog for the Mayo Clinic, says the caregiver must let go of negative thoughts by rethinking the situation.  The columnist is a dementia education specialist in the education core at the Mayo Clinic’s Alzheimer’s Disease Research Center in Rochester, Minn.  Lunde writes that the type of caregiver-patient relationship in the past plays a role in how the caregiver feels about caregiving in the present.  While some patients with Alzheimer’s endure the condition with their sunny disposition intact, other patients display symptoms of aggression, paranoid delusions, or other types of negative behaviors.  When those types of behaviors are added to a caregiver-patient relationship that has a shaky foundation, the environment creates a situation that is toxic to both sides.  If the relationship between the caregiver and the patient with Alzheimer’s is not on the best of terms, someone will have to let go of the negative feelings, Lunde wrote.  As Alzheimer’s progresses along its course, the patient probably will not remember the reasoning behind the negative feelings, so it is up to the caregiver.  Lunde wrote that learning to reframe a troubled relationship gives us an opportunity to let go of that which no longer serves us.  As a result, we may just find that we are more compassionate and accepting in our caring for others, and for ourselves, she wrote.

Read the complete article by clicking here

If caring for elderly parents, adult children should obtain these documents

Whether you have a parent with Alzheimer’s disease or parents that are simply getting older, adult children and caregivers should know about their loved ones’ health condition.  That is especially true if a situation arises where an adult child must make decisions about their parents’ care.  Marlo Sollitto, writing for AgingCare.com, lists three legal documents that are must-haves when facing end-of-life decisions.  The first document concerns the HIPAA Privacy Rule.  HIPAA, which stands for Health Information Portability and Accountability Act, is the form that everyone signs when they receive care from a medical facility.  It is a short form designed to keep an individual’s health information and records private.  Legislators signed the act into law to make it illegal for doctors to share any details about your parents’ health.  By filling out the HIPAA form, a patient authorizes his or her doctor to legally share any necessary information about their medical condition.  The second document is the health-care proxy, which is more commonly known as a medical power of attorney.  The proxy gives you the authority to act on your parent’s behalf in situations where they become unable to make health-care decisions for themselves.  With a proxy, only one person has the authority to make decisions, but the form contains an area to designate an alternative.  The alternative becomes the decision maker if the proxy is unable or unwilling to fulfill the responsibility.  It is important that the person with medical power of attorney knows all pertinent information about their parents’ health to make knowledgeable decisions.  The last document, an advance health care directive, provides your parents with the opportunity to spell out their end-of-life care decisions.  This document, also known as a living will, removes the worry from the proxy by stating whether an individual wishes to be resuscitated, desires artificial life support or wants medical staff to insert a feeding tube.  Within the directive, your parents can also list any other care or treatment they desire or do not want performed by the medical staff.  To have access to these documents, your parents must grant you the authority.  Therefore, before an emergency, you need to talk with your parents about their health care, learn about their wishes, and discuss these three documents during your conversation.

Read the complete article by clicking here

In Other News

Victim of “grandparent/grandchild” scam steps forward to warn seniors

An elderly man is too embarrassed to use his last name, but he still wants to warn other seniors about how he fell victim to scammers.  Gene is an 80-year-old grandfather who received a call from a blocked number, wrote Joe Rubino, a staff writer for the Broomfield Enterprise.  The caller identified himself as Gene’s grandson.  The grandson said he was in Canada to attend a friend’s funeral.  While in attendance, the grandson accepted a ride from people he did not know and ended up being arrested for drug possession.  He asked for bail money and begged his grandfather not to tell his parents.  Gene wired the money.  He never discussed the phone call with his grandson’s parents.  Next, a man claiming to be a police sergeant called to say the grandson’s co-defendants in the case hired a top-ranked lawyer.   The sergeant said if the grandson did not do the same, he might take the fall for the whole case.  The sergeant requested Gene wire more money to pay for the lawyer’s fees.  He instructed Gene to wire the money to a lawyer’s bank account in the Cayman Islands.  After four days of calls, Gene became suspicious and traveled to his grandson’s house.  When he arrived, he found his grandson there and learned he never left the country.  In the end, the scam artists bilked him out of $19,500, Rubino wrote.  This type of scam is becoming commonplace.  I just did not see this thing coming; it is such a little place to get right into your heart and hook you, Gene said.  Julie Ostrander, a detective in the Broomfield (Colo.) Police Department, said this type of scam has become increasingly common in the Denver area.  She said the scams generally involve phony grandkids who ask for bail money.  The calls usually originate from Canada or Jamaica.  Ostrander advised anyone who receives these calls to slow down and do some investigation before they wire any money.  The first step is to verify that the caller is indeed a family member.  If they do believe that the person is their loved one, at least come to the police and we will try to verify the information before the money is sent, Ostrander said.  Near the end of Rubino’s article is a sidebar that lists some other precautions everyone should take to protect themselves from fraud.  The recommendation is to use a telephone with caller ID, never talk to strangers on the phone, and enroll on the Do Not Call list.  The last suggestion says perform your own research.  Do not provide any financial information or any other private data that scammers could use to hurt you.  Rubino also mentions ElderWatch in his article.  The Colorado Attorney General’s Office and the AARP Foundation joined forces to form ElderWatch.  The organization fights the financial exploitation of older Americans in the state of Colorado, according to its Web site.  Even though the project is geared toward Coloradans, the site holds a wealth of valuable information available to anyone who wants to keep him or herself safe.

Read the complete article by clicking here