November is National Alzheimer’s Awareness Month

In the United States, the month of November is distinguished as National Alzheimer’s Awareness Month.  Throughout the month, advocates raise awareness, families honor loved ones who lost the battle to the disease, sponsors hope to raise additional funds, and some families might mark milestones as they care for those living with the condition.  November is the time to focus on Alzheimer’s so that we can move towards a cure, writes Derek Jones, a certified senior advisor at Griswold Home Care, which is billed as the nation’s oldest provider of home care for seniors and elders.  Jones notes that age is the biggest risk factor for Alzheimer’s disease.  Alzheimer’s typically affects those aged 65 and older.  However, the number of people with Alzheimer’s doubles every five years beyond age 65.  That means that among men and women between the ages of 65 and 74, five percent of them have the disease, Jones wrote.  Alzheimer’s experts estimate that nearly half of the population aged 85 and over have Alzheimer’s.  The writer says that while age is a factor, the Alzheimer’s research community is still studying other factors that contribute to the onset of the condition.  Researchers believe that high blood pressure, high cholesterol, and diabetes are medical conditions that might increase a person’s risk of Alzheimer’s.  Jones cites some of the issues people living with Alzheimer’s endure, including trouble finding the right word, keeping track of a conversation or remembering how to complete every day tasks.  And while this disease devastates those living with it, caregivers and families also pay a heavy price to help their loved ones combat the disease.  That is why November is also designated as National Family Caregivers Month.  Jones talks with two family caregivers who say Alzheimer’s wrecks havoc on the family as well as the patient.  Linda, one of the caregivers, articulates the toll it takes, but says it does not compare to what her father is going through.  Mary, the other family caregiver, recommends caregivers learn about Alzheimer’s and how to cope.  She suggests caregivers join a support group and learn to swallow their pride and ask for help.  Mary said it also helps to be an advocate as it makes her feel like you are fighting back.

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An introduction to Alzheimer’s disease

Alzheimer’s disease experts estimate the number of cases of the disease will more than triple by 2050.  After physicians tell their clients they have Alzheimer’s, many newly, diagnosed patients will embark on a quest to discover how the disease will affect their lives.  Chris Kelly, the Director of Learning and Development at Griswold Home Care, provides readers with a basic summary of some questions and answers asked by people recently diagnosed with Alzheimer’s.  While many people are familiar with the term Alzheimer’s disease, most do not know that Alzheimer’s is a form of dementia.  Dementia is the big, umbrella term used to describe any condition, which causes problems with memory and thinking, that impacts a person’s ability to function, Kelly wrote.  In his answer to “What is Alzheimer’s disease,” he writes that it is a progressive disease and says there is no cure.  He also responds to questions of what causes Alzheimer’s and addresses who develops the disease.  Kelly lists the symptoms of Alzheimer’s, writing that short-term memory loss is one of the earliest signs.  (See the following article for a more detailed summary of warning signs.)  The final question involves treatment plans for Alzheimer’s.  Of course, early diagnosis and treatment is the best course of action.  While there is no cure for the disease, medical professionals try to help patients maintain their mental function, manage behavioral symptoms, and slow the symptoms of the disease, Kelly wrote.  Pharmaceutical companies and researchers are studying a number of drugs, but only five have gained the approval of the Food and Drug Administration.  If you suspect your loved ones, or yourself, is experiencing symptoms of Alzheimer’s, schedule an appointment with a doctor, who may arrange an additional meeting with a specialist.

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Warning signs that may indicate the onset of Alzheimer’s

We are all going to age, but memory loss is not a normal part of aging.  While we laugh and joke about someone’s “senior moments,” frequent bouts of forgetfulness are signs of something more severe.  Is your loved one having trouble following conversations, balancing a checkbook or getting lost while driving?  These are some indicators that call for a medical evaluation.  Some loved ones may have noticed that they have difficulty performing certain tasks, but they may have adopted tactics to mask their issues.  If you are concerned that a loved one is experiencing memory loss, the Alzheimer’s Association created a brochure called the “Know the 10 Signs.”  The first warning sign is to look for memory changes that disrupt daily life.  Forgetting recently learned information is the biggest indicator for this sign.  Loved ones may forget important dates and repeatedly ask questions for the same information.  The second sign covers challenges in planning or solving problems.  You may notice your loved one has trouble concentrating and needs additional time to complete tasks that used to be easy to solve.  The third warning 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.  Confusion with time or place is the fourth sign.  With this indicator, your loved one may lose track of time, dates, seasons, and the passage of time.  The fifth sign concerns trouble understanding visual images and spatial relationships.  Obvious difficulty when reading, judging distance, and determining color and contrast are some warnings.  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.  The sixth sign concerns issues with words in speaking and writing.  People with Alzheimer’s may struggle with vocabulary and have problems finding the right word.  They may also call items by the wrong name.  Misplacing items or losing the ability to retrace steps is the seventh sign.  People with Alzheimer’s may accuse family of stealing because they tend to put things in unusual places and cannot figure out where they stashed their possessions.  The eighth sign is decreased or poor judgment.  For this sign, people experience changes in judgment or decision-making.  They may use poor judgment when handling money and become victims of telemarketers.  A withdrawal from work or social activities is the ninth sign.  People may avoid being social because of the changes they are experiencing and have trouble keeping up with their favorite team or completing a cherished hobby.  The last step concerns changes in mood and personality.  Once a person with Alzheimer’s is out of their comfort zone, they can become confused, suspicious, depressed, fearful or anxious.  They may also become easily upset when someone tries to alter their routines.  Frequent issues, or a combination of these signs, should result in an appointment with the family doctor to help discover the root of the problem.

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Patient with Alzheimer’s shares her story

While health experts defined a set of symptoms that denote the onset of Alzheimer’s disease, Janice Pfeilschifter says each individual has a unique experience with the disease.  Pfeilschifter, in a piece for the Alzheimer’s Association’s “Voices of Alzheimer’s” blog, adds her point of view to those who are managing life with Alzheimer’s.  She shares her own perspective of discovering she has Alzheimer’s, dealing with how the diagnosis will affect her, and being impelled to plan for her future.  Last year, at age 62, she landed at the starting point of the Alzheimer’s journey after she noticed she was having problems with balance and gait.  Pfeilschifter, who is a two-time cancer survivor, wrote that her doctor suspected that her cancer had returned and spread to her brain.  She reacted with shock and devastation when she learned the results of her tests revealed she had Alzheimer’s.  Pfeilschifter turned to the Alzheimer’s Association for help after learning of her diagnosis.  She is a member of the organization’s National Early-Stage Advisory Group.  As a former teacher and school principal, Pfeilschifter uses the techniques of taking notes to document conversations with students, parents, and teachers to help with her day-to-day activities.  After learning of her diagnosis, she retired from teaching third grade, but she still stays active in her career by tutoring and working at after-school programs.  As an early-stage patient with Alzheimer’s, she still lives alone and is proudly independent.  To stay safe, she sticks to routines, including placing her keys in a specific place and ensuring the stove is turned off every night.  In preparation for her future, Pfeilschifter has already appointed her brother-in-law as the person who will act on her behalf, giving him power-of-attorney.  She has also started visiting long-term care facilities in her area.  Health experts advise patients with Alzheimer’s to maintain their circle of friends and social lives.  At the end of her piece, Pfeilschifter touts her friendship with a lady named Jean.  The two met while teaching together a few years before Pfeilschifter’s diagnosis.  Jean is whom she is most thankful for, as she nurtures her soul, Pfeilschifter wrote.  As we observe National Alzheimer’s Disease Awareness Month and National Family Caregiver Month, Pfeilschifter is thinking of those who are facing Alzheimer’s and the caregivers who provide love and support, she wrote.

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Don’t feel guilty about asking family and friends for help

Some caregivers may be so busy they may not have the time to investigate additional resources.  To get some support, they should not feel guilty about asking family members for help.  Ellen Kleinerman, a reporter for The Plain Dealer, tells us about Jeff Jenkins, a 50 year old who cares for his mother at night, while working as a nurse during the day at Cleveland Clinic.  Jenkins is drained, but he says he wants to do all he can for his 78-year-old mother.  My mother sacrificed everything for me, he said.  Jenkins is fortunate enough to hire a paid caregiver while he works his shifts at the clinic.  Many caregivers of patients with Alzheimer’s are turning to the at-home senior-care industry, Kleinerman wrote.  Caregivers who hire someone to come to their homes benefit by ultimately lengthening the time they can perform their duties effectively, according to health care experts.  Of course, many caregivers cannot afford to hire outside help, that is why they should ask family members and friends for assistance.  Do not hesitate to ask, said Dr. Ruth Westheimer, the renowned relationship therapy and sex advice guru.  Westheimer authored a new book, called “Dr. Ruth’s Guide for the Alzheimer’s Caregiver,” with Pierre A. Lehu.  Westheimer, better known as Dr. Ruth, says relatives can help by assisting in small ways that add up to a significant respite for the caregiver.  She also suggests creating a help registry, similar to a bridal registry, which gives family and friends ideas of tasks that would help out the caregiver.  Caregivers can also do things for themselves by choosing a hobby or a light chore to accomplish with their patient with Alzheimer’s, Westheimer suggested.

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Nurses face a dilemma when family asks about patient’s condition

Telling a little white lie or simply stating the facts are the two choices nurses face when family members ask about their patient with Alzheimer’s disease, a small study found.  The study, conducted by researchers at Rollins College in Winter Park, Fla., posed questions to 32 nurses and care assistants, writes Robert Preidt for HealthDay News.  The goal of the study was to discover what types of social support the nurses thought was most helpful for families of patients with Alzheimer’s.  The study also found that nurses had difficulty answering family members who did not have power of attorney, but asked about a patient’s condition, regardless of the health information privacy laws, Preidt wrote.  The nurses and care assistants believe their role is to offer the family options for care instead of providing advice to family members.  The family member’s lack of understanding of the common set of expectations creates a difference in the perception of the role of nurses.  To counter that misperception, the study participants offered several strategies to help them communicate with families.  The first step is meet with the families to develop a common set of care expectations.  Secondly, make caregiving more visible by performing some tasks in the family’s presence.  Lastly, emphasize to relatives that visiting the patient is also good for the visitor.  Training that discusses the experience of family uncertainty, and how to manage it, would help nursing staff, said study author Anne Stone, an assistant professor in the Rollins’ Department of Communication.

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Nov. 13 is National Memory Screening Day, free screenings offered

The public can take advantage of free memory screenings on Nov. 13 at hundreds of sites across the United States and around the world.  The screenings are offered to promote early detection and treatment of Alzheimer’s disease and related illnesses.  Participants should follow up with their own physicians if the screenings identify any potential problems.  The Alzheimer’s Foundation of America (AFA) and a variety of healthcare organizations serve as co-sponsors of the event.  The screening, which takes about 10 minutes, is administered by healthcare professionals who use the Mini-Mental State Examination.  The exams gauge a person’s abilities during tasks that assess memory and other cognitive functions.  The AFA established a Web site where users can input their country and zip code to find a participating site in their area.  The memory screenings are one event used to celebrate National Alzheimer’s Disease Awareness Month

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Divorced parents and multiple marriages add to the caregiver motif

The depiction of a family that has remained supportive of each other for years presents another lasting, yet stereotypical image of caregiver and patient.  Unfortunately, the divorce rate and multiple marriages blow that conventional image away, wrote Chris Taylor, a contributor to Reuters.  Taylor focuses his piece on the efforts of adult siblings who care for divorced, aging parents.  The writer uses Devin Pope as the chief subject of his article.  Pope, a 33 year old, is caring for his parents who divorced after 27 years of marriage.  For his family, instead of his aging parents relying on each other for support, they rely on their children, mostly Pope.  After his father suffered a stroke that left him partially paralyzed and without much short-term memory, Pope’s parents decided to divorce.  Now Pope, a financial adviser, is dividing his time between supporting both parents, which he says is time consuming and emotionally draining.  Taylor interviewed a number of experts, including Susan Brown, a sociology professor at Bowling Green University, where she led a team of researchers on a recent study.  Findings from the study concluded that one in three baby boomers is currently unmarried and that 60 percent of unmarried boomers are divorced.  We found that unmarried boomers are much more economically vulnerable than married boomers are, Brown said.  The researchers found that unmarried boomers were more likely to be poor, on public assistance, and less likely to have health insurance.  Divorced boomers were also more likely to have a disability, the study found.  Multiple marriages are another aspect of the caregiving motif that is generally not on the radar.  In this situation, adult children may have to care for their stepparent as well as their biological parent.  They may have to make tough choices for their parents, while working with stepsiblings they may not be close to, or even know very well, Taylor wrote.  The writer says divorce presents a two-fold challenge for adult siblings, namely financial concerns along with emotional ones.  He says experts suggest taking financial action early.  The best plan of advice is to call a family meeting, said Joy Loverde, author of “The Complete Eldercare Planner.”  At the meeting, the family should work together to devise a plan that addresses issues that may arise in the future, including how to pay for living expenses and medical costs.  Inquiring about long-term health insurance, obtaining a reverse mortgage, re-entering the workforce, and providing help to claim money that is due your aging parents are some of the methods adult siblings should investigate to pay expenses, Taylor wrote.  For Pope, his mother has gone back to work, while they secured personal assets, including Social Security and Veterans Administration benefits, to help his father.  The biggest challenge is balancing it all, Pope said.

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Caregiving picture does not incorporate medical and nursing tasks

With life expectancy rates continuing to climb in the U.S., the number of family caregivers increases as well.  To highlight that statistic, when we turn on our televisions or go to the movies, happy and content family caregivers and their loved ones often greet us.  While that representation is great for productions, columnist Paula Span writes that it does not characterize the true image of caregiving.  Span, an author and the caretaker of The New York Times’ “The New Old Age” blog, wants to publicly document an unacknowledged shift in the role of a caregiver.  Generally, the family caregiver helped their loved one with the activities of daily living, such as bathing, dressing, and preparing meals.  Now, along with those duties, caregivers are frequently performing medical and nursing tasks.  Span writes that professionals used to perform those tasks, but somewhere along the way, medical and nursing duties fell under the purview of family caregivers.  Some of the tasks include giving injections, using feeding tubes and dialysis equipment, operating a ventilator, and dressing a patient’s wounds.  Most family caregivers perform these duties without any training, supervision or someone to call for advice, if they need help.  Span cites statistics from a survey conducted by Knowledge Networks and commissioned by Carol Levine, of the United Hospital Fund, and Susan Reinhard of the AARP Public Policy Institute.  Knowledge Networks contacted 1,677 people who care for an adult relative or friend.  Levine and Reinhard turned the survey into a study, which found that 46 percent of the respondents were doing medical/nursing tasks in addition to helping with the activities of daily living.  Other conclusions from the study that found more than three-quarters of family caregivers reported that they managed medications, while one-third said they performed nursing tasks and over a third described wound care as particularly difficult, Span wrote.  The people who are not doing these tasks will be doing them, Levine said.  While Levine and Reinhard do not believe professionals will ever return to doing the medical and nursing tasks, they are calling on health care providers, federal policy makers and professional associations to find ways to better train and support family caregivers.

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Child recalls her father’s battle and her years as a caregiver

Stefania Silvestri shares a vivid memory of helping care for her father who died of Alzheimer’s disease.  Silvestri was only 14 years old when her father was diagnosed with early onset Alzheimer’s at age 48.  Silvestri used her experiences to pen new book, titled “Beside The Mountain: Finding Strength and Courage Through My Father’s Early Onset Alzheimer’s Disease.”  The volume recalls her father’s six-year battle against Alzheimer’s and how she came to terms with her struggle as a teenager.  While her father battled the disease, Silvestri helped care for him along with her two sisters and their mother.  The Huffington Post contains a captivating excerpt from her book that recalls her falling asleep next to her father while he sat in his recliner watching the stock market channel.  When she woke about an hour later, she discovered that her father had slipped away.  Silvestri looked around the room and realized he was gone.  Around the same time, she heard her mother screaming from upstairs that she could not find her husband.  Silvestri jumped into her mother’s car in an effort to find her father.  In the midst of looking for him, she narrates other interactions she had with her father.  She remembers taking a walk with him.  She balked at her mother’s suggestion to take him out, but felt shame when she saw her father’s reaction to her mother’s request.  He was excited and off they went.  Silvestri walked with him to an area where her best friend lived.  The location also served as a place she would go to smoke and drink the miniature liquor bottles she stole from her parents.  She later learned these little bottles were memories from her parents’ past.  Eventually, she saw him walking down a street, but he kept walking after she beeped the horn and yelled at him.  After pleading and begging, he finally got into the car and they drove home.

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Preserve your memories with journals, photo albums and brain games

For anyone that is getting “up in age,” especially those with memory ailments, the memories you hold should be passed down to your families’ younger generations.  Sarah Jennings, a lifetime caregiver who writes for Brookdale Assisted Living, says that Americans are living longer and seniors can do a whole lot more than their counterparts did 50 years ago.  In a piece for The Washington Times, she suggests a few ways seniors could keep their mind sharp and pass on their legacy before their memories start to fade.  While some may disagree, Jennings recommends using mental exercises to keep your mind fit.  Along with tackling crosswords, Sudoku and other brain puzzles, there are many Web sites that cater to brain-strengthening games.  Photo albums are another way to help preserve your past experiences.  There are stores and hobby shops dedicated to scrapbook making.  If you have a digital camera, or an Internet-connected device, you can send your recent adventures instantly to loved ones.  Jennings’ last suggestion is to keep a journal.  She says that when we write down information, it is recorded differently than when we speak it or review it in our heads.  Written information allows the author to go back and double check facts before you tell the story during family gatherings.  After your death, or if memory loss is a problem, the remaining family members can go through the photo albums and journals to gather important milestones in your life.  Preserving your memories is a great way to keep your brain sharp and remain connected to your family.

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Easier mealtime for caregivers, if family prepares extra portions

Asking for help is one of the best things caregivers can do to assist their loved one with Alzheimer’s disease and themselves.  For most patients with Alzheimer’s, the loving person who serves as the primary caregiver is generally a family member who dedicates him or herself to the responsibility.  With all the challenges they face throughout the day, Dotty St. Amand, writing for The News-Press, says that other family members and friends can make mealtime easier by pitching in to help.  Preparing dinner is much harder for male caregivers who usually relied on their spouse to plan, shop, cook, and place dinner on the table.  After meeting the physical challenges of caring for their much larger husband, cooking late in the day might also pose a problem for women who are tired and had a stressful day.  Amand, an administrator at a memory care assisted living facility, says meal preparation could be the perfect time for other family members to provide some assistance to the caregiver.  She suggests family members, or friends, prepare extra portions of the dinners they cook during the week, and place these additional helpings in freezer-safe containers.  A trip to the grocery store will help beef up the meal by adding a fresh loaf of bread and a couple of salad kits.  A few days later, family members should deliver these extra portions to the caregiver, allowing him to sail through dinnertime for a whole week, Amand wrote.  The writer also suggests choosing one day each week to pick up the couple’s favorite takeout meal.  In addition, to show their love and support, family members and friends who deliver food can take turns eating a meal each week with the couple.  Amand wrote that one of the best things family and friends can do to help their caregivers is to become their biggest advocate.  For mealtime help, caregiver support can include discovering resources to help meet more challenging areas, cooking classes, and hiring a companion service to allow the caregiver the opportunity to shop.

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Friends come and go, but loved ones stay true forever.  Or at least that is the hope for families with a loved one with Alzheimer’s disease.  Gary Joseph LeBlanc believes some family members and friends stop visiting loved ones with Alzheimer’s because of a lack of knowledge about how to approach someone living with the disease.  LeBlanc, the author of a weekly column called “Common Sense Caregiving,” writes that not visiting patients with Alzheimer’s is much worse than watching our loved ones fade away right in front of our eyes.  By serving as his father’s primary caregiver for nearly 10 years, he can offer his knowledgeable advice to others.  LeBlanc provides a few tips to help those struggling with how to approach a loved one with Alzheimer’s in the moderate to latter stages.  When you go to visit your loved one, do not rush up to them, approach at a normal pace.  You should walk up to them from the front, never approach from behind or from one side, LeBlanc wrote.  Before you begin to speak to them, ensure the loved one sees you.  The columnist recommends doing these steps with a smile on your face.  In addition, we all know someone who likes to keep a little distance between friends while talking; the same rule of thumb applies for patients with Alzheimer’s.  LeBlanc suggests standing to one side to leave some personal space and an escape path for your loved one.  You should also introduce yourself and state your relationship.  Do not start the visit by asking a question, especially not, “Do you remember me?”  Instead of asking a question, making a statement such as, “I remember when we…” is a better way to maintain the connection with your loved one, LeBlanc wrote.  The writer added two other tips, including lowering yourself to their level and allowing them to shake and hold your hand, if they feel like it.  It may take a while to master these tips, but LeBlanc says, “Practice makes perfect.”

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Cue cards help “Alzheimer’s proof” the home and communicate ideas

As your loved one progresses through the stages of Alzheimer’s disease, one of the things caregivers need to do is “Alzheimer’s proof” their residence.  For caregivers looking for some help, Right at Home, which provides in-home caregiving services for a variety of situations in over 250 locations, produced its own version of Alzheimer’s cue cards.  The organization designed the cue cards to help caregivers enhance the safety of the home environment and help prolong the independence of the love one with Alzheimer’s.  Allison Juceam, writing for Right at Home, describes the cue cards as “easy to read.”  Each card features a drawing of the function of various rooms, appliances, equipment, and furniture, she wrote.  The cue cards serve as a method that helps your loved one safely navigate their home environment.  With a little imagination, the cards could also give loved ones with Alzheimer’s the thrill of some new activities.  Cindy Marino, Right at Home’s director of marketing, says the cards communicate to patients with Alzheimer’s what is happening or what is about to occur, instead of relying on constantly asking questions.  By letting the person know step by tiny step every detail of what you are doing relieves stress, she said.  The cue cards also provide support to the caregiver as well, Marino said.  Caregivers, who want more information, should send an e-mail to mjuceam@rahcentralgulfcoast.com or call (941) 929-1966 and ask for Michael Juceam.

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Higher rates of AD, but African-Americans absent from volunteer studies

African-Americans and Hispanics are more likely to develop Alzheimer’s disease than whites, but people of color are usually less informed about the disease and available resources.  The latest statistics from the Alzheimer’s Association finds that more than 21 percent of African Americans age 71 and older have Alzheimer’s or some form of dementia, while the rate for whites in the same age category stands at 11 percent, wrote reporter Gracie Bonds Staples.  The writer begins her piece by telling us about the family of Fred H. Singleton, Jr.  Singleton died at the age of 81 from Alzheimer’s.  His daughter, Dr. Christa-Marie Singleton, and her family decided to donate his brain to the Registry for Remembrance (Remembrance study).  The goal of the registry is to raise awareness, educate, and recruit African-Americans for long-term research participation in neurological studies, according to a flyer for the initiative.  Emory University’s Alzheimer’s Disease Research Center established the registry in 2009.  Singleton said by us donating his brain to research, hopefully the Emory team can ‘go where his brain has been’ to find ways to better prevent this devastating disease.  Singleton and Karen Jackson, whose mother was recently diagnosed with dementia, want African-Americans to know how important it is that they become involved in the registry and a current, ongoing study called Caregiver Opportunities for Optimizing Lifestyles-Alzheimer’s Disease.  Dr. Monica Parker, an assistant professor in Emory’s Department of Medicine, and a principal investigator for the Registry for Remembrance, attributes African-Americans’ higher rate of vascular disease as one reason it affects this population more than others.  While Alzheimer’s affects different racial populations the same way, how it manifest in African-Americans is not as clear cut, Parker said.  That is why more African-Americans need to volunteer to help find the answers.

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ADI report finds 25 percent of AD patients hide their diagnosis

About 25 percent of people with Alzheimer’s cite the stigma of the disease as the reason why they conceal their diagnosis.  That is one of the statistics in the World Alzheimer Report 2012, produced by Alzheimer’s Disease International (ADI), an organization based in London.  Nicole Ostrow, a reporter for Bloomberg News, summarizes the report, which takes into account the effects of Alzheimer’s on a global scale.  Nearly 36 million people worldwide are living with Alzheimer’s and that number will rise to 115 million by 2050.  The report places the global costs of Alzheimer’s at $604 billion.  As a comparison, Ostrow uses statistics related to the battle against Alzheimer’s in the U.S.  For this year, the Alzheimer’s Association estimates the costs of Alzheimer’s in the U.S. to reach $200 billion.  Most experts place the total current number of cases of Alzheimer’s in the U.S. at 5.4 million.  They predict that number will rise to 16 million by 2050.  That number basically covers costs to the government health insurance programs Medicare and Medicaid, Ostrow wrote.  While complying its report, ADI surveyed 2,500 people with Alzheimer’s and their caregivers in 54 countries.  About 66 percent of the respondents said there was little to no understanding of Alzheimer’s in their nations.  The survey also found that 75 percent of patients and 64 percent of caregivers cited the negative associations for people with Alzheimer’s.  If you would like to read the report in a PDF file, please click here.

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Choosing to be happy results in better health for everyone

Family caregivers who go through the day by choosing to be happy with a positive attitude show less wear and tear from the stress of caregiving, Victor Imbimbo wrote for The Huffington Post.  Imbimbo, the president and CEO of Caring Today, said he works with many family caregivers, and as a group, he sees a wide range of attitudes and emotions.  His company conducted a national survey to uncover the attitudes and issues involved in caregiving.  About 60 percent of the respondents reported that they felt very positive about their role as a family caregiver, Imbimbo wrote.  They said their role as a caregiver strengthened their relationship with a family member and provided them with the emotional benefit of giving back the love they received.  Caregivers, who retain a positive attitude, were more focused and worked harder at creating quality life experiences, Imbimbo wrote.  When he interviewed these caregivers, he said they clearly discussed their desire to focus on optimism and happiness.  Imbimbo recounts how he worried about waiting for the next shoe to drop as he served as his mother’s caregiver.  During his anxiety of constantly fearing the worst for his mother, he also feared the worst for himself.  While Imbimbo realizes it may not be easy to do, he advises us to choose to be happy.  He recommends six steps to practice to make oneself a happier person.  First, he wants us to define happiness for ourselves.  Secondly, we should prioritize the areas in our life that bring us enjoyment.  Next, realize as a person you should focus on what you can control and do your best to accept what you cannot.  His fourth step is to practice gratitude daily.  In the fifth step, provide encouragement to at least two people every day.  Lastly, Imbimbo says we should choose to be happy today and stay in the present.

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Make the move to a new residence less stressful for Alzheimer’s patients

The time may come when moving your loved one with Alzheimer’s disease to a nursing home or assisted living facility is the best option for both the patient and the caregiver.  The Staff at the Mayo Clinic provides a strategy that gives caregivers some idea of how to prepare for such a move.  As usual, the first step involves planning for the inevitable.  The staff recommends talking to your loved one while they are in the early stages of Alzheimer’s as a good way to learn and understand their wishes.  After learning of their preferences for living arrangements, caregivers should visit a few facilities to check whether they meet the loved one’s expectations.  You may want to include your loved during these visits.  That is a good idea as long as the visits do not create stress and anxiety for the patient, the staff said.  After making a selection, bring some of your loved one’s favorite items to the new environment to make the space look and feel as comfortable as possible.  Pictures of loved ones and friends, a favorite chair or quilt, and other meaningful possessions are some of the suggested items.  Adding familiar belongings to the living space helps trigger feelings of connectedness and ownership, the staff said.  It also helps boosts your loved one’s sense of security.  When it is time to make the move, the staff recommends sticking to the normal routine as much as possible.  They also suggest that your loved one’s best time of the day is the perfect time to make the move.  While moving is never fun, keeping a positive disposition will help make the transition a little less stressful for the caregiver and help the loved one feel safe and secure in the new environment.  After the loved one is settled into the new place, the caregiver should trust the employees of the facility to help with the next big part of moving: the departure of the caregiver.  The separation from your loved one can cause feelings of grief, loss and guilt for the caregiver, while at the same time, it could take a couple of months for your loved one to adapt to their new living arrangement.  To alleviate these feelings, the staff recommends the caregiver frequently visit their loved one and encourage family members and friends to do the same.

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For caregivers and their loved ones with Alzheimer’s disease, support groups provide much needed information, a place to air their burdens, and companionship with people in a similar situation.  After their eight-month class on memory loss, five couples and two single women did not want their camaraderie to end, reporter Dominique Fong wrote for The Oregonian.  One couple, Dave and Hallie Caswell, said their love and care for their fellow attendees grew so much that they invited them to the Caswell home in Beaverton, Ore., for a potluck dinner.  At first, they dubbed their group, “I Forget,” but after some group members began to forget the name, they changed it to the “Wild Bunch.”  Fong wrote that these types of groups are crucial to overcoming the stigma and loneliness of Alzheimer’s disease.  There is a need for caregivers and people with the disease to have a place to go to socialize, to learn, to interact, to prevent some of that isolation and minimize some of that stress often for people with this disease, said Kristrun Grondal, the Oregon program director for the Alzheimer’s Association.  For the Wild Bunch, not only did its members maintain their friendship, they also continued their forum of discussing their daily frustrations as the disease progressed.  In addition, if any member needs assistance, the Wild Bunch has an unwritten pact that says help is just a phone call away, Fong wrote.  Besides the Wild Bunch’s homegrown group, the Beaverton area is host to an Alzheimer’s Café, which offers a social outlet to attendees along with a short presentation by an expert on a range of topics, including assisted living or elder care issues.  One member of the Wild Bunch summed up its attendance at their Alzheimer’s support group very nicely.  Alzheimer’s can bring you together quite easily, said 72-year-old Meme Amaral, who has Alzheimer’s disease.

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Tips for good communication with loved ones with Alzheimer’s

For those who have just taken on the role of caregiver to those who are old hands, Carole Larkin has revised her tips for communicating with patients with Alzheimer’s disease or other forms of dementia.  Larkin, a geriatric care manager who specializes in helping families with Alzheimer’s and dementia related issues, offers an insightful list that will help caregivers and family members communicate with their loved ones in a variety of ways.  To summarize her tips, she says you should always approach your loved one from the front.  If you advance toward them from behind or the side it will probably startle them.  You should also make eye contact and try to place yourself at their level.  If they are sitting, you should sit as well.  When speaking to your love one, you should speak slowly and calmly in short sentences.  Also, only ask one question at a time and wait for them to answer before you ask another question.  Moreover, you should never ask them questions of “why,” because that is too complicated for them, Larkin wrote for the Alzheimer’s Reading Room.  Another important tip is to monitor your loved one’s senses to check for changes.  If any changes occurred, you will need to adapt your communication techniques to allow for those changes.  If there is a change in hearing, you should check to see if they understand what you are saying, Larkin advises.  In addition, the author reiterates the importance of allowing a person with Alzheimer’s to do as much as they can for themselves.  For this tip, you need to make sure your loved one is safe and supervise them as they work through the task.  Have them perform the task in stages, where they do one simple part, and then move to the next segment.  You should also praise your loved one whenever they accomplish any task.  Caregivers should always emphasize the “we” of daily living.  Constantly tell them that you are there, that they are not alone, and that everything is OK, Larkin wrote.  You can also raise their self-esteem by telling them that you care about them.  Use a positive, upbeat style to communicate with your loved one, as people with dementia tend to reflect the emotion a person displays to them.  As a final tip, Larkin writes that caregivers may have to use body language to communicate as the loved one progresses through the stages of Alzheimer’s disease and words and their meaning no longer make sense.

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Walk to End Alzheimer’s may raise more funds with teams of walkers

As only a relative few people work as scientists, the majority of people might want to pursue other means to aid in the fight against Alzheimer’s disease.  While the temperature is still warm in the majority of the U.S., a group in North Platte, Neb., is laying plans for an annual fall event, the Alzheimer’s Association Walk to End Alzheimer’s.  A slight change to this year’s walk has the organizers urging walkers to participate in teams, wrote Diane Wetzel, a reporter for the North Platte Telegraph.  The North Platte committee organizers held a team captain meeting for people interested in learning about the walk.  At the meeting, the organizers distributed fundraising packets and information on raising awareness and money, Wetzel wrote.  The meeting also served as a way to get people motivated, find team members, and raise funds.  The change from individual walkers to a team-oriented approach may lead to increases in the amount of money raised and the fun level for the participants, said committee member Kirsten Parker.  It has been proven that there is an increase in funding and awareness with teams, she said.  Billed as the nation’s largest event to raise awareness and funds for Alzheimer’s care, support and research, the Walk to End Alzheimer’s serves as a means to allow everyone to do their part in the battle against the disease.  It also allows the walkers to help their own neighbors and honor their loved ones.  The event is held annually in more than 600 communities nationwide, according to the association’s Web site.

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Guidelines to use when being falsely accused by your loved one

Some behaviors expressed by patients with Alzheimer’s disease, or other forms of dementia, may throw their caregivers for a loop.  Suzanne Holguin, who writes the “Caregiving” column for the Petoskey News-Review, writes about one of the more surprising ones, caregivers who are falsely accused by their patients.  Holguin writes that even though caregivers know patients with dementia transition from moments of coherency to states that show cognitive decline, a caregiver’s first reaction is to defend themselves against the accusations.  Holguin, a registered nurse who holds a Bachelor of Science in Nursing, is an assessment nurse and caregiver support group facilitator at the Friendship Centers of Emmet County, Mich.  She shares some tips to help caregivers navigate this situation when it occurs.  Holguin says you should try to use basic language to affirm that you understood what your loved one told you.  A caregiver should say, I am glad you told or shared that with me, I did not know that, Holguin wrote.  Next, the caregiver, or family member, should assure and confirm with the loved one that you will tell someone or take care of it.  In addition, you should also say, I will make sure that will not happen again, she wrote.  After being accused, one of the main elements you should address is making sure your loved one is not afraid and feels safe, Holguin wrote.

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Ways to ensure we meet the social needs of patients with dementia

Last month, Angela Lunde began a series on negative behaviors.  Lunde wrote that a patient who acts out, or exhibits disruptive behavior, is communicating to you that they have an unmet need.  In the third part of her series, she reminds us that unmet needs generally fall into three broad categories: personal health, physical environment, and social environment.  In this part, Lunde, the chief writer for the Mayo Clinic’s Alzheimer’s blog and a dementia education specialist in the education core of Mayo Clinic’s Alzheimer’s Disease Research Center at the Abigail Van Buren Alzheimer’s Disease Research Clinic, addresses the patient’s unmet social needs.  The social environment, including relationships with others, shows just how deeply the losses a person with dementia suffers and how those losses affect their quality of life.  The caregiver is the one who can help the patient maintain the social part of their lives.  Lunde says these unmet social needs are what everyone craves and requires for basic human fulfillment.  The writer provides a list of these needs and offer details for each requirement.  Some of the items on the list include: meaningful activity and a sense of purpose, a sense of autonomy, a sense of identity, and understanding and being understood.  After the list, Lunde provides some techniques to help caregivers and families communicate with their patient with dementia.  Caregivers should don a positive disposition, use “little lies” to reduce stress for their loved ones, recognize that being rational and logical with someone who is not can only get you in trouble, and listen with your ears, eyes, and heart.  Overall, Lunde hopes that more people are now seeing disruptive behavior as the only way a patient with dementia can communicate that they have an unmet need.

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Patient wanders off while waiting for ride after medical appointment

Reporter Nick Budnick addresses a tough question: Should patients with dementia ever be left unattended while out in the community.  Budnick, writing for The Oregonian, relates a recent event where an 82-year-old patient wandered off after a medical appointment.  The medical staff concluded the appointment for the patient, James Frederick Martin.  After talking about “going home” to an apartment he had not lived in for years, Martin left the medical facility, Budnick wrote.  Martin should have waited for a ride back to his residence from his medical transport, but before it arrived, he slipped away.  The incident resulted in a 21-hour search with K-9 teams and police alerts.  Fortunately, police found Martin alive and unharmed.  The obvious question to ask is, “Where was Martin’s caregiver?”  During his investigation, Budnick tried to get all the facts, but the police, the medical transport company, and the owners of the medical clinic cited privacy concerns and declined to answer some questions.  The lack of answers only leaves us wondering who is responsible for the incident.  Even if he has been safe before, Martin’s caregiver should not leave him alone at any point, said Kristrun Grondal, the Oregon program director for the Alzheimer’s Association.  Grondal said that even though the situation may seem safe, you never know when that moment comes when the patient is motivated to take off.  While the safety of the patient with dementia should be a top concern, if your loved one does wander off, Budnick suggested a few additional measures that offer some extra protection.  Some resources to consider include “safe return” bracelets and the emergency response system to help locate wandering patients.  In addition, an agency in Martin’s Northeast Portland vicinity offers volunteer escorts for patients, if for some reason, the caregiver cannot attend his loved one.  Budnick notes a rule of thumb supplied by some experts: If people cannot be trusted to drive, then they probably should not be trusted to use transit unsupervised.  The executive of the agency that provides escorts disagrees with that concept, which brings us back to the original question of responsibility for unattended patients with dementia and their ultimate safety.

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

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

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

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Researching and questioning home care agencies can reduce the hardships

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

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Recognizing a need and achieving the solution

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

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Suggestions to make bath time an easy part of the routine

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

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Add an elder care category to your financial plan

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

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The notion that families take care of their own may inspire some caregivers of patients with Alzheimer’s disease toward burnout.  While a caregiver believes that they know their loved one the best, they may not ask for any assistance and attempt to become the perfect caregiver.  Gary Joseph LeBlanc says there is no such thing as a perfect caregiver.  LeBlanc, who writes a weekly column called “Common Sense Caregiving,” served as his father’s primary caregiver for nearly 10 years.  His advice to caregivers is to become a student of your patient by learning their body language and facial expressions.  Caregiving does not come with a manual, so acquiring the knowledge about what works best for your loved one will generally come through trial and error.  LeBlanc writes that some patients may experience an extreme symptom while others, with the same disease, may never even encounter it.  He says that is why he never subscribed to the preconceived notion of “listed stages of Alzheimer’s.”  Family members and researchers note that some patients retain their mental function for longer periods of time, while for others, the progression of Alzheimer’s seems to skip one of the prescribed stages.  You can learn more information and pick up some new procedures from reading or hearing about what other caregivers are doing, but you may need to tweak the techniques for your loved one.  If you should find something that works, stick with it for as long as it is successful, LeBlanc wrote.  Instead of being perfect, LeBlanc wants caregivers to strive for being the best they can.  Those who learn from their own mistakes, and then try to educate themselves about their ongoing situation, become the best caregivers, he wrote.  To help your learning process, use the empathy from inside your soul to guide you, LeBlanc wrote.

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Volunteers needed for the largest, most comprehensive Alzheimer’s disease study

Maybe you gave it a fleeting thought, but family physicians might soon ask whether their patients with memory issues might want to participate in a research study for Alzheimer’s disease.  For the National Alzheimer’s Plan, which has a goal of preventing and effectively treating Alzheimer’s disease by 2025, many people will need to volunteer as part of the plan calls for increases in research trials to meet its objectives.  One study, the Alzheimer’s Disease Neuroimaging Initiative (ADNI), is asking family physicians throughout the United States to help steer volunteers to the study, wrote Matt Brown for the American Academy of Family Physicians.  ADNI is named in the national plan to address Alzheimer’s disease as a way to accelerate efforts to identify early and pre-symptomatic stages of Alzheimer’s disease.  ADNI is referred to as the largest, most comprehensive Alzheimer’s disease research effort in history.  The study is set to move to the second phase, called ADNI2, but it is undergoing problems trying to gather a cohort of qualified volunteers.  ADNI2 needs 400 volunteers between the ages of 55 and 90 to fulfill its recruitment efforts.  A potential participant must have a diagnosis of early mild cognitive impairment, late mild cognitive impairment or early/mild Alzheimer’s disease.  In addition, the volunteers must be fluent in English or Spanish, in good health and willing to undergo in-clinic assessments, memory testing, and other procedures.  Furthermore, the participants must attend all clinic visits with a family member or friend who is willing to accompany them and with whom they have at least 10 hours of contact each week.  The goal of ADNI is to discover ways to predict and monitor the onset and progression of Alzheimer’s disease using biomarkers found in blood and cerebrospinal fluid, as well as MRI scans and various positron emission tomography imaging methods, said Dr. Michael Weiner, the principal investigator of ADNI.  With funding from the National Institutes of Health (NIH), ADNI operates locations in 55 clinical sites, generally at universities, in the U.S. and Canada.  The NIH produced a patient handout, and one for physicians as well, that answers some basic questions to those seeking more information.  Weiner wants to assure everyone involved that ADNI is not trying to steal patients away from their family physicians.  We want family physicians to continue following their patients, but we also need those patients to participate in the research, he said.

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Alzheimer’s disease in the African-American community

Alzheimer’s disease affects everyone; it pays no heed to cultural boundaries and slips through the borders of any country.  In the U.S., older African-Americans are two to three times more likely than older whites to be diagnosed with Alzheimer’s disease and other dementias, according to the latest statistics in the Alzheimer’s Association annual report, 2012 Alzheimer’s Disease Facts and Figures.  Andrea Parrott, a freelance writer, wrote a series about African-Americans and Alzheimer’s disease.  Parrott researched and wrote the series after receiving a MetLife Foundation Journalists in Aging Fellowship, a project of New America Media and the Gerontological Society of America, in 2011.  Within the four articles published in the series, Parrott focuses on two couples.  James and Ann Small and Chuck and Juanita Williams were willing to share their stories about how Alzheimer’s set them on an unpredictable course filled with confusion, denial, recognition, acceptance, and facing the future.  Many people do not want to acknowledge or discuss Alzheimer’s disease and that is certainly true in the African-American community.  Parrott tackles this issue throughout her series and notes some of the reasoning behind this viewpoint.  As a black community, we do not want to talk about it, said Ann Small.  People are not comfortable telling others about a diagnosis because they feel embarrassed, and they do not understand it, said Dorothea Harris.  That is their business, said Harris, who is a licensed social worker and a family memory care coach and consultant at the Family Memory Care for African Americans program at Volunteers of America of Minnesota.  With Alzheimer’s advocates blasting the message about the impending epidemic, everyone should take notice.  Since there is no cure for dementia, doing whatever one can to prevent the onset of the condition is our best hope for the near future.  Parrott noted that vascular diseases, such as high blood pressure, high cholesterol, and diabetes are factors that increase the incidence of Alzheimer’s.  These types of illnesses have a higher rate in the African-American community.  Parrott also addresses the fact that African-Americans still hold fast to the belief that families care for their own.  Without much of a presentation of cultural differences found in many assisted living facilities or nursing homes, that belief will be hard to break.  On average, an African American caregiver will spend 30 hours a week assisting a loved one, according to the 2012 Alzheimer’s Association report.  The report also found that African-American caregivers experience a higher level of burden from caring for their loved one.  Overall, Parrott produced a series that could serve as an introduction, a call-to-action, and a blueprint for people in the African-American community who are caring for someone with Alzheimer’s disease.

If you would like to read the entire series:

Read Part 1 by clicking here

Click here for Part 2

Click here for Part 3

Click here for Part 4

Study finds most subjects will undergo testing to screen for dementia

A new study answers the theoretical question of whether people would want to discover if they suffer from dementia.  The study found that 90 percent, of a cohort comprised of 554 subjects, demonstrated their willingness by undergoing the screening.  Researchers, at the Regenstrief Institute and the Indiana University School of Medicine, said the subjects ranged in age from 65 to 96.  Females accounted for 70 percent of the cohort; half of that percentage was comprised of African-American women.  About 75 percent of the older adults had an annual income of less than $20,000, according to statistics from the study.  Sex, race, education, and level of income did not factor into the participants willingness to undergo the screening.  While the acceptance rate was highest for those aged 65 to 69, most of the subjects in their 70s refused to submit to the screening.  We were surprised by the fact that only one in 10 older adults did not want to be screened for dementia, said Dr. Malaz Boustani, the study’s corresponding author and principal investigator.  The research team believes their conclusions will help doctors and the United States Preventive Services Task Force evaluate the benefits and harms of dementia screening by providing the voice and perceptions of patients, he said.  Since dementia typically strikes those 65 and older, experts will have to produce special efforts to get people in their 70s to undergo dementia screening, Boustani said.

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Suggestions to help explain Alzheimer’s disease to children

Alzheimer’s disease does not just affect the patient.  It can also overwhelm the patient’s family as well.  Since many patients with Alzheimer’s are cared for at the homes of their adult children, it may be necessary to explain Alzheimer’s disease, and its effects, to small children.  The Staff at the Mayo Clinic addressed this issue in a recent article.  The Staff suggests that parents anticipate their children’s questions, prepare for their child to act out in emotional expressions, and help their children maintain their relationship with the person who has Alzheimer’s.  Once a child notices that something is amiss with a grandparent, parents should prepare to answer questions about the behavior expressed by grandma or grandpa.  Parents should anticipate the questions their children may ask and respond to their inquiry by replying with simple, honest answers, the Staff wrote.  Asking what is wrong with a grandparent, wondering if the grandparent still loves them, inquiring about fault, and investigating if their parent will develop Alzheimer’s are some of the answers a child might seek.  If a parent notices their child behaving a little differently when around your loved one with Alzheimer’s, the parent should start the conversation with the child.  The Staff writes that children might express their emotions in ways that may not appear to be connected to their grandparent.  Some of the examples include complaints of headaches or other physical issues, failing schoolwork, your child’s reluctance to bring friends to the house or looking for ways to spend time away from the house.  This is another area where the adults have to take the lead and explain to the child what they observed.  To help your child feel safe in sharing their feelings, you should listen to the child’s concerns and offer comfort and support.  Scheduling an activity that both your child and loved one with Alzheimer’s can both complete is a good way to preserve the child’s relationship with their grandparent, the Staff wrote.  For families with younger children, the Staff recommends the children and grandparent spend time together looking at family albums, listening to music or doing other simple activities.  As a final recommendation, parents may have to remind their children that their grandparents’ behavior is not intentional, but one of the symptoms of the disease.  The Staff says families can move past this by demonstrating how much they love the person with Alzheimer’s and their children.

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Three ways to keep the peace with bad-tempered patients with Alzheimer’s

Caregivers with blogs or those who write newspaper columns often say enter the reality of the loved one with Alzheimer’s disease.  They note that even though you know the actuality about a topic or thing, what is the harm in agreeing with the patient with Alzheimer’s as a way to keep the peace.  Marie Marley uses her knowledge to help end hostile interactions between caregivers and patients with Alzheimer’s who experience negative personality changes due to symptoms of the condition.  Marley, a caregiver, author and a blogger for The Huffington Post, was at the end of her rope with Ed, her Romanian soul mate of 25 years.  Ed had become irritable, angry, mean, and emotionally abusive toward Marley, which made her want to end their relationship.  She related an incident where he was really confused and after that episode, she said he became hostile if she expressed a contrary opinion to his views.  Seeking advice, she called a friend, a geriatric social worker, who suggested that Ed might have dementia.  Marley wrote that she immediately dismissed that notion.  The friend told her that, perhaps, she should end her relationship.  While they talked about divorce, Marley said she loved Ed and wondered how she could ever abandon him.  To stay in the relationship, her friend offered her three suggestions to keep the peace.  The first suggestion is to avoid topics that caregivers think will upset their loved one or lead to a disagreement.  Abruptly changing the subject, if a topic starts to agitate a patient, is the second recommendation.  For the third suggestion, do not argue with the loved one, agree with everything he says, no matter how absurd.  The social worker told Marley that the rules may not stop all the fights, but it would help.  At first, Marley had trouble following the suggestions.  She found the guidelines very difficult and kept forgetting them.  After she mastered them, the number of nasty arguments decreased significantly and her and Ed’s closeness returned to its former state, Marley wrote.

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Kathy explains her Alzheimer’s diagnosis this way: Now I am caught in the tension between remembering and forgetting.  Kathy is a 62-year-old registered nurse who is doing what she can to hold onto her life.  Angela Carella, a reporter for The Advocate, a Stamford, Conn. newspaper, describes Kathy as a fighter.  Kathy, who wants to keep her last name private because not everyone knows of her diagnosis, has already defeated cancer and received a new kidney in a transplant.  She was diagnosed with Alzheimer’s disease two years ago and has watched the condition progress, Carella wrote.  While working in the healthcare industry, Kathy is more than likely aware of the outcome from Alzheimer’s.  She is determined to go out with a lot of kicking and screaming.  She joined a theater project that has a goal of starting a dialogue about Alzheimer’s disease.  Kathy also speaks to audiences about how she is faring and discusses using Post-it notes as a way of coping with the disease.  In the article, Carella also tell us about a caregiver who felt lost until she joined a caregivers support group.  The writer also touches on the differences in research funding for Alzheimer’s disease when compared to other illnesses and the fact that patients who have just been diagnosed with Alzheimer’s cannot really expect a great deal of assistance from their doctors.  Even though she is aware that families are caring for loved ones with Alzheimer’s without much government support, Kathy says she tries to forget that she has dementia.  I say lets have some fun today, she said.

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Purpose in life may slow the rate of cognitive decline

Having a greater purpose in your life may help you reduce your odds of developing changes in the brain that are called the hallmarks of Alzheimer’s disease.  Researchers at Rush University Medical Center found that a meaningful life helped protect against the harmful effects of plagues and tangles on memory and other thinking abilities.  The researchers, based at the Rush Alzheimer’s Disease Center, enrolled a cohort from the Rush Memory and Aging Project.  The researchers studied 246 volunteers, who did not have dementia, for a period of 10 years.  At the start of the study, the subjects underwent an annual clinical evaluation that included cognitive testing and neurological exams, according to a press release.  In addition to their medical workups, the participants also answered questions about their purpose in life.  The researchers inquired about the degree to which one derives meaning from life’s experiences and whether it is focused and intentional.  Upon their death, the researchers studied the brains of the subjects to quantify the amount of brain plaques and tangles.  The scientists used this information to gauge whether purpose in life slowed the rate of cognitive decline.  Our study showed that people who reported greater purpose in life exhibited better cognition than those with less purpose in life even as plaques and tangles accumulated in their brains, said Dr. Patricia A. Boyle.  The discovery of plaques and tangles in the brain does not mean that a person suffered from dementia.  Recent studies have reported finding plaques and tangles in the brain of patients with Alzheimer’s as well as healthy patients.  The goal of the researchers’ study is to discover a strategy that employs a beneficial way to reduce the impact of plaques and tangles on cognitive functions while the Alzheimer’s research community finds a cure for Alzheimer’s.  Identifying factors that promote cognitive health even as plaques and tangles accumulate will help combat the already large and rapidly increasing public health challenge posed by Alzheimer’s disease, Boyle said.

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How to inform family and friends about your loved one’s diagnosis of Alzheimer’s

By 2050, Alzheimer’s experts predict that the number of Americans with Alzheimer’s disease will soar to more than 16 million people.  This increase in the number of cases would impact many families.  In addition to family members, friends, coworkers, doctors, and a variety other people would want to know of your loved one’s diagnosis.  Learning how to break the news to others is the focus of a recent article by Marie Marley, a caregiver, author and a blogger for The Huffington Post.  Marley wrote that it is important to inform others so that the patient and caregiver will receive understanding and emotional support.  If the loved one with Alzheimer’s is able to participate in a discussion, they should decide who should tell other people.  Along with family members, including young children, you may want to inform neighbors and more casual acquaintances about the diagnosis.  Marley says there are a couple of ways to let people know about the diagnosis, but for each of them, you should always respect the loved one’s wishes.  Holding a family meeting or calling or telling each member individually are some of the ways to inform others.  Marley also wrote that a letter might be a good way to inform people.  By sending a letter, it gives a person some time to digest the news, before discussing it.  The article also covers how family and friends will react to the news, special consideration for children, and the legal obligation to inform the Bureau or Department of Motor Vehicles.  If the decision is made to keep the diagnosis confidential, this may lead to stress for everyone involved and prevent the loved one and the caregiver from receiving support from family and friends, Marley wrote.

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Validation therapy designed to benefit Alzheimer’s patients in their 80s and 90s

Entering the reality of a loved one with Alzheimer’s disease and getting them more in touch with their surroundings is the objective of validation therapy.  Linda Rhodes, a columnist for The Patriot-News and a former Secretary of Aging for the Commonwealth of Pennsylvania, shares what she learned about the treatment from the executive director of the Validation Therapy Institute.  The goal of validation therapy is to communicate with people in their 80s and 90s who are diagnosed as having Alzheimer’s disease and related dementia, said Vicki de Klerk-Rubin, the institute’s executive director.  Klerk-Rubin is the daughter of the founder of the validation therapy movement.  Naomi Feil founded the movement in response to her dissatisfaction of using traditional methods to work with severely, disoriented older seniors who were her clients, according to her Web site biography.  To embrace this type of therapy, caregivers and others should not confront or correct the patient’s reality, but should try to explore it and enter it without judging the loved one.  Caregivers should get in sync with the loved one’s behavioral cues and body language to share their emotions and enter the reality of a loved one with dementia, Klerk-Rubin said.  Validation therapy provides a number of benefits to its patients, including a restored sense of self worth, less withdrawal from the outside world, more engaged communication, and interaction with those around them, she said.  Rhodes asked Klerk-Rubin what she would tell a family facing a journey with Alzheimer’s at the helm.  Caregivers should begin each day by allowing his or herself to have a good time and go with the flow of emotions from their loved one, Klerk-Rubin said.  By letting go of all the “shoulds,” such as using a time-sensitive schedule, forcing the patient to shower or remember the date, the caregiver will discover how to connect with their loved one, she said.

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Loved ones with dementia usually die at home instead of nursing homes

It is a commonly held belief that people with dementia generally die in nursing homes, but a study conducted by two institutes found that idea to be false.  The study, titled “Transitions in Care for Older Adults With and Without Dementia,” is the result of work done by researchers at the Regenstrief Institute and Indiana University (IU).  In the study, the researchers tracked the movement of patients with dementia until death, regardless of the cause of death.  The cause of death for most patients with dementia is due to some physical condition such as heart disease, cancer or pneumonia, according to the press release from Indiana University.  Instead of a linear line of a loved one with dementia going from home to hospital to nursing home, the researchers found that the number and direction of transitions in care follow no set course.  The scientists concluded that people with dementia go back and forth from home to hospital to nursing home and back to home.  After hospitalization, about 74 percent of the patients with dementia transition to a nursing home, but they do not remain there indefinitely.  Approximately a quarter will return to the hospital in less than a month, according to the release.  Most of the remaining loved ones will return home to receive additional care from their families.  This is a study on what it is like to live with dementia over a five- to 10-year period, said Dr. Christopher Callahan, an investigator at the Regenstrief Institute and the founder of the IU Center for Aging Research.

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As her mother enters latter stages of Alzheimer’s, daughter turns to palliative care

Lisa Moore has come to the realization that her mother does not know who she is at times.  At other times, Moore, who serves as the primary caregiver for her 88-year-old mother, Rose Beebe, says that sometimes when she enters the room, her mother blurts out her name and pats her face.  Moore, a freelance writer for the South Charlotte News who authors a column called, “Generations,” came to the conclusion that her mother is moving deeper into the late stages of Alzheimer’s disease.  To make this part of the journey easier for her mother, Moore decided to begin palliative care for her.  The goal of palliative care is to alleviate pain, ease discomfort, and improve the quality of life for individuals with a condition that cannot be cured.  When you decide to start palliative care, the consulting service assigns a palliative medicine nurse practitioner to the patient.  The nurse is a consultant with specialized training to provide expert care for people with serious medical conditions.  To enhance overall care, the consultants work in collaboration with primary care physicians.  Moore believes consulting with a specialist will help her make decisions regarding her mother’s care as her mother travels deeper into the latter stages of Alzheimer’s.  Moore wrote that before the diagnosis of Alzheimer’s, her mother was very healthy and did not take any medicines.  Now, Rose is taking a bunch of pills for a variety of ailments.  Since they were prescribed, Moore did not object to them.  However, since her mother can no longer communicate effectively, whether the pills are of benefit remained an unanswered question.  Tawana Dickinson, the palliative medicine nurse practitioner assigned to her mother, helped Moore with this issue.  Dickinson reviewed the medicines and offered advice on which pills to discontinue.  She also suggested improvements to better manage Rose’s pain.  From talking with Dickinson, Moore wrote that palliative medicine will help her by providing the practical suggestions and emotional support she needs to be better equipped to make decisions about her mother’s care.  The writer chose to obtain palliative care to preserve Rose’s dignity and quality of life.  She also wants to help her mother die as consciously as she has lived, Moore wrote.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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