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Why Do People Die from Alzheimer’s Disease?

Alzheimer’s disease (AD) is a very complex condition that is always fatal. It manifests initially with marked memory failure and lapses in judgement, but as it progresses, it also has a devastating effect on higher brain functions that many people take for granted. In the later stages of the disease, balance and coordination as well as autonomic functions like heart rate, breathing, digestion and sleep cycles are severely affected.

In the final stage, patients will be unable to perform the tasks that keep their bodies alive and functioning. Neurological damage and muscle weakness cause patients to lose the ability to coordinate even simple movements. Eventually, they are unable to walk, communicate, maintain control of their bladder and bowels, feed themselves, chew, and swallow food without significant assistance and careful supervision. The later stages can be both emotionally and physically taxing not only for patients themselves, but also for their family caregivers. At this point, if the subject has not already been discussed, family members may wish to consider hospice care for their loved one.

Read: Hospice Care for Advanced Dementia: When Is It Time?

A lack of self-awareness and self-care, prolonged confinement to a bed, feeding failure, inability to receive proper nutrition and dehydration are all factors in the development of other life-threatening health conditions. While brain damage associated with AD is the driving force behind the patient’s decline and incapacitation, these secondary illnesses and conditions are ultimately responsible for causing the patient’s decline and death. Complications from Alzheimer’s disease are commonly cited as such on death certificates. Because of this, deaths with a primary cause of Alzheimer’s disease and other forms of dementia are seriously underreported. This is especially true since dementia can go unnoticed as it progresses slowly over the course of many years. Furthermore, a significant number of patients never receive an official neurological diagnosis while alive or after passing.

The most prevalent cause of death in dementia patients is a secondary infection, commonly pneumonia. Bacterial infections could be easily remedied with a course of antibiotics in healthy individuals. However, advanced AD patients are usually too frail and immunocompromised to fight bacterial infections, even with the assistance of these drugs. Infections often return after treatment, and many patients or their family members make the decision to forgo aggressive treatment options and/or resuscitation efforts that may cause pain and discomfort for only a short-term benefit.

The following conditions can cause or contribute to multiple organ failure and death in seniors with severe Alzheimer’s disease:

  • Heart attack
  • Dehydration and malnutrition, whether due to a voluntary stopping of eating and drinking (VSED) health care directive or due to the natural dying process
  • Injuries and fractures caused by falls
  • Thromboembolisms
  • Pressure ulcers (bedsores)
  • Stroke
  • Kidney failure
  • Lung infections like aspiration pneumonia caused by dysphagia and inhalation of food particles
  • Sepsis (if infections like urinary tract infections and pneumonia spread)

Because these secondary conditions and their treatments can cause a great deal of anxiety and discomfort, many patients and their family caregivers prioritize quality of life over quantity and opt for comfort care in lieu of extensive life-sustaining measures. This is a difficult and highly personal choice for families, but it should be taken into consideration as early as possible before Alzheimer’s disease progresses to the point where patients can no longer make informed decisions about their own end-of-life care.

Source: AgingCare – Dr. Maurizio Grimaldi

Winter Top Tips: How to Keep Seniors Happy, Healthy and Warm

Winter Top Tips: How to Keep Seniors Happy, Healthy and WarmThe AgingCare.com forum is filled with people coming together to share valuable information. We’ve compiled experienced caregivers’ suggestions for keeping a loved one cozy, content and clean in spite of cold winter weather.

 Winter Skincare Tips

“Although many people use baby oil, it contains mineral oil and artificial fragrances. If your loved one has any chemical sensitivities (and a lot of older people do), it is best to stay away from any artificial fragrances, artificial ingredients and mineral oil. Try organic coconut oil for soothing and moisturizing dry skin. It is simple and very effective. I also recommend visiting a good health food store and asking about lotions that are all natural.” –oceansong

“My primary care physician (whom I hold in very high regard) recommends Eucerin lotion products. They are a little pricey, but they last forever. I think they also make a lotion specifically for diabetics.” –Miasmom1

“Many of us love the bath or shower to be very hot, especially when it is cold outside. However, high temperatures can be very drying for the skin. I know my hands also become super dry in colder weather. I tried just about everything, but my hands felt like I had a dozen paper cuts and I looked like I was attacked by my cats! Then I found O’Keefe’s Working Hands Hand Cream. It’s mainly advertised to men, but I tried it and so far, so good! It can be found in grocery stores and hardware stores.” –freqflyer

“My mom developed dry, irritated skin last winter, and I thought she was having an allergic reaction. When we went to the doctor, he called it ‘winter itch’ (a seasonal type of eczema). It was all over her body and, of course, she has opened some areas on her skin. We are using antibiotic ointment and heavy cream specially forumlated for eczema. This has helped a great deal in just a couple of days!” –Seastar

Staying Warm While Bathing in Winter

“Temperature! Turn up the central heat to keep the bathroom warm during bath time. Seniors are often cold, even when we are wearing short sleeves. If there is cold tile in the bathroom, cover it with a plush bath rug and make sure they don’t fall. If you have an overhead heater, turn that on, too. Wear light clothing so you do not get totally overheated while helping them!” –homeandhearth

“A radiant heater panel can be especially useful for bathrooms. During fall and winter, mine is plugged into a motion sensor timer that you set for automatic shut off. We have it set to go on when motion starts, and it goes off when no motion is detected for five minutes. It makes the bathroom warm (I go and trigger it before Mom goes into the bathroom for a shower), and there’s no risk of it tipping over because it’s anchored to the wall.” –glasshalffull

“I purchased a small fan heater for our bathroom. My loved one gets cold easily, especially since the water is not running on her constantly because she uses a shower seat while bathing.” –Anonymous6636

Ending the Thermostat Wars

“As people age, typically the circulation in their extremities (arms and legs) diminishes, causing them to feel cold. Any time you go to a senior living center, you’ll see older people dressed far more warmly than younger people because the seniors are chilly. They’ll even wear sweaters when it’s hot and humid outside. Low thyroid can be another cause of being cold, so be sure to get that checked. My mom’s thyroid quit working about two years ago. Once we got her on thyroid medications and got the dose regulated, she felt warmer and had more energy.” –blannie

“Last winter (out of desperation), my husband and I installed a programmable thermostat and we put it high enough that Mom can’t reach it to crank the heat up. It has worked so well without having to leave notes or try to remind her not to touch it.” –chrisblair63

“I use a Sunbeam heating pad on the back of my dad’s chair. I just saw that Sunbeam and Sure Fit offer heated slip covers, too. As for me, I have been spared by a tall Dyson fan. It makes very little noise and feels like the air it puts out is cooled even though it isn’t. I set it up pointed directly at my chair. It can also oscillate, but the stationary position is perfect since my dad does not feel it and I do. This setup has kept him warm and me cool—something that many caregivers struggle with.” –pipruby

“If you get an electric blanket, make sure it has a cutoff temperature. My mom hates my electric heating pad for her back because it will only keep a high temperature for so long and then it turns off as a safety feature. I told her it’s better than falling asleep on it and getting burned.” –timbuktu

“Beanbag/microwavable heat packs can be heated and strategically placed at the hip, stomach, back and feet. They also make a slipper version that has helped my mom with the Raynaud’s syndrome in her feet.” –glasshalffull

Indoor and Outdoor Safety Tips

“My dad has two walkers. There is one that he leaves in the garage after going all over the yard and through the snow/dirt. Mom won’t let him in the house with it unless he cleans it off, so Dad just bought another walker for indoor use only.” –freqflyer

“Your loved one’s favorite holiday decoration may be a fifty-year-old menorah or Nativity scene with incandescent bulbs. On all décor, check thoroughly for dried and cracking wires and loose connections on the plug. It may have been perfectly safe for many years, but old wiring causes many fires this time of year.” –pamstegma

“A word of caution: canes are terrible on ice. If your loved one needs someone or something to help them walk, it is better that they stay indoors until the weather improves. If they need to get out and about, have someone meet them at home to help them on snowy, icy walkways.” –freqflyer

“I worry when my mother-in-law runs the temperature up higher in her home due to her tendency to get dehydrated. Each and every time she has been hospitalized, it has been because of dehydration. It is common knowledge that it is easier for seniors to get dehydrated when it is hot outside, but it is also a serious issue during winter, especially for those who have trouble getting enough liquids. Help them hydrate any way you can!” –oldcodger2

Source: AgingCare.com

Repetition and Alzheimer’s

Repetition and Alzheimer'sA person with Alzheimer’s may do or say something over and over — like repeating a word, question or activity — or undo something that has just been finished. In most cases, he or she is probably looking for comfort, security and familiarity.

Causes

The main cause of behavioral symptoms in Alzheimer’s and other progressive dementias is the deterioration of brain cells which causes a decline in the individual’s ability to make sense of the world. In the case of repetition, the person may not remember that she or he has just asked a question or completed a task.

Environmental influences also can cause symptoms or make them worse. People with dementia who ask questions repeatedly may be trying to express a specific concern, ask for help, or cope with frustration, anxiety or insecurity.

Because people with Alzheimer’s gradually lose the ability to communicate, it’s important to regularly monitor their comfort and anticipate their needs.

How to respond

  • Look for a reason behind the repetition.
    Does the repetition occur around certain people or surroundings, or at a certain time of day? Is the person trying to communicate something?
  • Focus on the emotion, not the behavior.
    Rather than reacting to what the person is doing, think about how he or she is feeling.
  • Turn the action or behavior into an activity.
    If the person is rubbing his or her hand across the table, provide a cloth and ask for help with dusting.
  • Stay calm, and be patient.
    Reassure the person with a calm voice and gentle touch. Don’t argue or try to use logic; Alzheimer’s affects memory, and the person may not remember he/she asked the question already.
  • Provide an answer.
    Give the person the answer that he or she is looking for, even if you have to repeat it several times. If the person with dementia is still able to read and comprehend, it may help to write it down and post it in a prominent location.
  • Engage the person in an activity.
    The individual may simply be bored and need something to do. Provide structure and engage the person in a pleasant activity.
  • Use memory aids.
    If the person asks the same questions over and over again, offer reminders by using notes, clocks, calendars or photographs, if these items are still meaningful.
  • Accept the behavior, and work with it.
    If it isn’t harmful, don’t worry about it. Find ways to work with it.
  • Share your experience with others.
    Join ALZConnected, our online support community and message boards, and share what response strategies have worked for you and get more ideas from other caregivers.

Source: Alz.org

Baby Boomers Are at High Risk for Hepatitis C

Baby Boomers Are at High Risk for Hepatitis COver the past several years, there has been a lot of interest in hepatitis C (HCV)—television commercials about new HCV drugs, increased media coverage on drug prices and even discussion among presidential candidates.For a disease called the “silent epidemic,” that’s a fair share of attention.

In a lot of ways, though, it remains silent: Most people, especially baby boomers, who are at risk of having hepatitis C, don’t know it and don’t get tested for it. Most people who have HCV don’t know it because it usually doesn’t have noticeable symptoms for years. Many people don’t want to know about it because of stigma or fear.

Caregivers and professionals play an important role in educating baby boomers about hepatitis C and their risk of having the virus. Everyone can do a better job of ensuring baby boomers are educated on and tested for HCV.

What Is Hepatitis C?

Hepatitis C is a disease of the liver caused by a virus primarily transmitted by contact with infected blood. It’s relatively common—3.5 to 5 million people in the United States live with it. There is no vaccine for HCV, but it can be treated and cured. The trick is finding out you have it. Hepatitis C is not routinely tested for and there are often no symptoms for decades (hence the “silent” in silent epidemic).

When there are symptoms, initially they are often mild—fatigue, joint aches or mood changes—and mirror other conditions, so people often ignore or work through them. If hepatitis C is left untreated, it may lead to scarring of the liver, a condition called cirrhosis. Cirrhosis can lead to liver cancer, liver failure and death. These outcomes can be avoided when hepatitis C is detected early and treated.

Testing for Hepatitis C

Hepatitis C can be diagnosed with a simple blood test. If that test is negative, and there are no ongoing risks for infection, then no further testing is needed. If the first test is positive, then a second confirmatory test is needed. People often assume their medical provider will order an HCV test as part of routine blood work, but it must be specifically ordered.

Individuals born between 1945 and 1965 account for 75 percent of those living with HCV. The reasons for this are many and varied, but many people were exposed by medical procedures, long-term hemodialysis or blood transfusions prior to July 1992, before we even knew HCV existed and developed the knowledge to prevent it.

See a complete list of who should be tested here.

Why Baby Boomers Should Be Tested

Many baby boomers think they don’t need to be tested for HCV because they don’t have any symptoms of the disease or believe they aren’t at risk. Because HCV is usually asymptomatic, and because baby boomers often don’t have a clear identifiable risk for HCV, yet make up the vast majority of people living with it, it is recommended that all baby boomers get tested for HCV once in their life. While this should happen automatically and with no questions asked, it is still a relatively new recommendation and many medical providers aren’t testing baby boomers for HCV. Anyone born between 1945 and 1965 should ask his or her medical provider if he or she has been tested, and if the answer is no, a test should be ordered. The same goes for the aging adults you work with. Let them know about hepatitis C and tell them they should get tested.

Treating and Curing Hepatitis C

Anyone who tests positive for HCV can begin treatment immediately. Treatments typically include taking pills for 8 to 12 weeks (Some people may need as long as 24 weeks) with mild and manageable side effects. With treatment, 95 percent to 99 percent of people end up cured. Once cured, most people report improved liver health and a reversal of liver disease.

Hepatitis C can feel scary, but it doesn’t have to be. All baby boomers, including baby boomers working in aging services, and their clients, should be tested. The message is simple: baby boomers are at risk—get tested, get cured.

Source: ASA – American Society on Aging

Early Diagnosis of Alzheimer’s Is Crucial for Effective Planning and Treatment

November is National Alzheimer’s Disease Awareness Month—an important opportunity to shed light on a condition that is often misperceived as untreatable. Alzheimer’s disease (AD) is the sixth leading cause of death in the United States, but dementia from Alzheimer’s continues to be underdiagnosed and underreported. In fact, according to a U.S. survey conducted by the Alzheimer’s Association, almost half of patients with AD are already in the moderate to severe stages by the time they are diagnosed. This lack of attention to the early stages of Alzheimer’s is unfortunate, because there are things we can do to help those who are starting to experience memory loss and support the people who are caring for them. Although a cure does not yet exist, available treatment options can help to slow down the progression of symptoms, especially if diagnosed early.

Caring for Someone with Alzheimer’s Disease

AD poses real challenges not only for the people diagnosed with the disease but also for the 15 million Americans who assume caregiving responsibilities. The multitude of obligations can have a huge impact on caregivers, with one out of every two of them developing major depression. The economic burden of providing care is huge as well. In 2016, the annual cost of care was $230 billion in the U.S. alone.

Many of my patients and their caregivers are hoping and waiting for a cure to become available. Even though there are novel drugs and other interventions in various phases of research and development, patients’ mental states continue to deteriorate with each passing day as their families wait for a disease-modifying treatment. The road to development and approval of a new drug is long and rigorous, and only a small percentage of medicines ever make it to market. This is time that Alzheimer’s patients simply cannot afford to waste.

A diagnosis will spur family members to start a conversation about planning for the future—a difficult, yet necessary discussion that they may have shied away from without a clear understanding of their loved one’s health. Timing is crucial because this planning phase must be done while the patient is still capable of sharing their wishes and competent to execute all the necessary legal documents, such as medical and financial powers of attorney, a will, advance health care directives, trusts, etc. These preparations enable the family to understand their loved one’s preferences for long-term and end-of-life care and give them the legal authority to see them through once their loved one has lost the ability to handle their own affairs.

The Treatment Journey

While there are no treatments available that can prevent, cure or change the underlying progression of Alzheimer’s disease, there are medications that can help minimize symptoms for a while. Once again, early diagnosis is key since each prescription is approved for different stages of the disease. These medicines can help people living with AD maintain their cognitive abilities and continue functioning at higher levels longer.

In addition to pharmaceutical treatments, there are also lifestyle choices that can help lower the risk of developing the disease and stabilize the symptoms of AD for those who already have it. These activities include regular physical exercise, stress management, proper diet, and prompt treatment of medical conditions like hypertension and high cholesterol. These lifestyle modifications can have a huge impact on a person’s brain health.

If you are concerned about a loved one’s memory, encourage them to go see a doctor. The good news might be that there is nothing to worry about, but if a problem is detected, ask about available treatment options. Early diagnosis and proactive treatment could help some of the 5.5 million Americans who are currently living with Alzheimer’s disease and their loved ones.

Source: AgingCare.com

Partnerships Pave the Road to Effective Alzheimer’s Drug Treatment

Partnerships Pave the Road to Effective Alzheimer’s Drug TreatmentAdvancements in treatment for heart disease, stroke and cancer can be traced back to the use of imaging technologies that enable doctors and researchers to visualize the impact and progression of these diseases inside the body.

Just a decade ago, we had no way of seeing or measuring the hallmark amyloid brain plaques of Alzheimer’s disease dementia in living people. Now there is brain imaging that makes this possible. Known as amyloid PET scanning, this technology helped establish the widely held view that Alzheimer’s may begin up to 20 years before problems with memory and thinking are noticeable.

This progress would not have been possible without innovative and strategic collaborations to build research infrastructure and overcome obstacles to advancing critical studies. A clear example of this is the landmark Alzheimer’s Disease Neuroimaging Initiative (ADNI).

ADNI launched in 2004 to identify and understand markers of Alzheimer’s in body fluids and brain tissue. Now more than 1,000 participants at 57 locations across the U.S. and Canada are enrolled in it. Led by the U.S. National Institutes of Health (NIH) with private sector support coordinated by the Foundation for the NIH, ADNI unites federal agencies, academia, industry, and nonprofit organizations (including the Alzheimer’s Association) to make large-scale research possible. Importantly, there are no intellectual property or other limitations placed on data and samples generated through the initiative.

ADNI findings provided support for FDA approval of the first chemical tracer making amyloid brain plaques visible on a PET scan. Alzheimer’s Association funding supported expanding ADNI to include PET imaging. The work enabled by this funding made a huge difference in our understanding of the role amyloid, both in people with Alzheimer’s dementia and those with normal cognition.

In fact, ADNI and other studies laid the groundwork that led to the FDA approval of three amyloid PET tracers by 2013. In response to this new technology, the Alzheimer’s Association partnered with the Society of Nuclear Medicine and Molecular Imaging to lead an expert group of researchers to develop Appropriate Use Criteria (AUC) for amyloid PET. The AUC have provided important guidance to physicians and patients on the use of amyloid PET.

However, also in 2013, the Center for Medicare and Medicaid (CMS) issued a decision that they would not reimburse for amyloid PET. Once again, the Alzheimer’s Association responded by launching the $100 million IDEAS Study with the American College of Radiology (and significant funding from CMS for the scans, plus support from Lilly, GE and Piramal) to generate data on the impact of amyloid PET on medical management of people with MCI and dementia in the hope of changing the CMS decision.

One of the major findings from ADNI is that up to 30 percent of people believed to have Alzheimer’s did not have abnormal amyloid build up. As a result, researchers are using amyloid PET imaging to improve clinical trials. For example, Biogen’s Phase 1b trial of the anti-amyloid agent aducanumab enrolled only individuals with high levels of amyloid buildup in their brains based on the scan – ensuring participants have the problem the drug candidate is meant to address.

We are at a moment of unprecedented promise in Alzheimer’s research. It is time for even greater collaboration and innovation. Alzheimer’s is a complex disease that still lacks an effective treatment or prevention. If new treatments aren’t found, the number of Americans with Alzheimer’s is expected to triple from more than 5 million today to as many as 16 million by 2050, costing the nation $1.1 trillion annually and potentially crippling our healthcare system. (Alzheimer’s Association 2017 Alzheimer’s Disease Facts and Figures)

The majority of Alzheimer’s investigational therapies that have advanced to late-stage clinical trials have targeted amyloid plaques, but numerous studies suggest additional factors contribute to the disease’s development. For example, there is evidence that the accumulation of tau tangles – another hallmark brain change of the disease – is more closely associated with cognitive decline in Alzheimer’s than levels of amyloid. Other contributors may include inflammation, problems with blood circulation in the brain, and reduced clearance of abnormal proteins.

In October 2015, the Alzheimer’s Association Research Roundtable (AARR) brought together experts from academia, industry, and regulatory agencies to examine the underlying biology of tau in neurodegenerative diseases and explore strategies to expedite development of tau-targeted therapies. At AAIC 2016, researchers for TauRx Therapeutics reported results of a trial of an anti-tau drug for Alzheimer’s. While it failed to demonstrate a treatment benefit in the full study population, it was the first completed phase 3 trial of an anti-tau therapy.

Anti-tau therapeutics is a growing area of interest for pharmaceutical/biotechnology companies. Currently, there are several anti-tau drugs in clinical trials, plus multiple studies are honing the measurement of tau buildup using tau PET imaging and cerebrospinal fluid (CSF) analysis, according to a May 2017 article in Alzheimer’s & Dementia: Translational Research & Clinical Interventions.

Regardless of the treatment target, one of the biggest bottlenecks in the drug development process is transitioning drugs from preclinical testing into clinical trials. To ensure that more promising drug candidates advance past this “valley of death,” the Alzheimer’s Association, in partnership with philanthropist Michaela Hoag, leads an initiative called Part the Cloud (PTC) Translational Research Grants. PTC funds research specifically designed to accelerate the transition of research findings from the laboratory, through clinical trials, and into practice.

One PTC grant recipient is Tim West, Ph.D., of C2N Diagnostics. The funding enabled the company to conduct a Phase I study of an investigational tau-targeting drug now known as ABBV-8E12. In 2015, C2N entered into an exclusive partnership with global biopharmaceutical company AbbVie, Inc. for the drug’s continued development. Now there are two ongoing international Phase II studies of the compound. It has received both Orphan Drug Designations for Progressive Supranuclear Palsy in the U.S. and Europe, and Fast Track Designation from the U.S. Food and Drug Administration.

The PTC initiative supports both academic and company-based projects. Since its inception 2012, it has raised more than $20 million for Alzheimer’s research with the help of more than 300 donors – many of them leaders in the technology industry in California’s Silicon Valley. In 2017, PTC announced a $7 million investment in four clinical trials targeting brain inflammation as an innovative avenue for Alzheimer’s therapy. The hope is success stories similar to C2N’s will be the result.

Looking ahead, researchers hope to discover even easier and more accurate ways to detect Alzheimer’s before its devastating symptoms begin. There are ongoing efforts to show that markers of Alzheimer’s in blood and CSF can be identified and measured to determine who is at increased risk for developing the disease. Additional studies suggest smell and eye tests may be able to detect memory decline and dementia.

Before these and other diagnostic measures, known among scientists as biomarkers, can be widely incorporated into clinical practice, they must be standardized. This is another area where collaboration will be key to success.

The Global Biomarker Standardization Consortium (GBSC) is one partnership that is driving discussions on global standardization, and is led by the Alzheimer’s Association. GBSC brings together researchers, clinicians, and industry, regulatory and government leaders to achieve this. Its efforts include demonstrating the safety of lumbar punctures for collecting CSF so researchers, clinicians, and patients will be more comfortable using this procedure in Alzheimer’s research and diagnosis. GBSC also is working to standardize procedures for processing, handling, and storing CSF samples.

Similarly, a partnership called the Coalition Against Major Diseases (CAMD) is working to secure regulatory support for use of certain Alzheimer’s biomarkers in clinical trials. CAMD’s coordinating committee consist of 18 pharma/biotech companies, four patient advocacy groups, and drug regulatory agencies in the U.S. and Europe

The Alzheimer’s Association encourages federal agencies, academia, industry, and advocacy groups to join partnerships that drive Alzheimer’s research forward and is open to discussing such possibilities with all who are interested. While research is the vehicle, these collaborations pave the road to making sure no one has to suffer the devastating effects of Alzheimer’s – a destination we all want to reach.

Source: R&Dmag.com

Capgras Syndrome: How to Cope with a Loved One’s Delusions

Capgras Syndrome: How to Cope with a Loved One’s Delusions

Capgras is a type of delusional misidentification syndrome (DMS) that may present due to any number of neurological diseases or psychiatric disorders. Although the exact prevalence of this disorder is unknown, a 1999 study estimates that it is present in between two and 30 percent of individuals with Alzheimer’s disease. This disorder can seriously complicate a dementia patient’s quality of life and their caregivers’ efforts, so it is crucial to spread awareness of this little-known condition.

What is Capgras Syndrome?

“Capgras is a misidentification syn­drome characterized by the transient, recurrent, or permanent belief that someone known to a patient has been replaced by an impostor with a strong physical resemblance,” explains Erin Shvetzoff Hennessey, MA, NHA, CPG, and Vice President of Health Dimensions Group. “These delusions are suggested to stem from impairment of the brain’s facial recognition system and are also associated with brain lesions.” There is limited research available on this condition, but it affects those with a variety of neurological and psychological diagnoses, including schizophrenia, Alzheimer’s and other forms of dementia.

Capgras can be extremely stressful for the person with the syndrome, but it is also very disturbing for those around them. “While dementia caregivers usually anticipate a loved one’s forgetfulness and inability to remember close family members and friends, it can be very painful and confusing when this syndrome causes a different kind of loss of recognition,” laments Shvetzoff Hennessey. A loved one may remember their caregiver, spouse, or other relative—and may even ask for them by name—but they believe that this person is an impostor. Such delusions can make caregiving, family time, and other social experiences extremely painful and confusing.

Reality Orientation Techniques

When interacting with a person who is experiencing Capgras, it is common for caregivers and family members to attempt to correct or explain their delusions. A research article in the Frontiers in Human Neuroscience journal states that, “A defining characteristic of delusions also present in Capgras syndrome is that patients will firmly hold on to their delusional beliefs [even] in the presence of mounting contradictory evidence.”

While some caregivers may continue to correct sufferers and try to convince them that they are merely experiencing delusions, the use of reality orientation techniques for sufferers of memory loss has declined in recent years. “This strategy includes frequent reminders of present time, location and facts based in reality, including deaths, moves or other major life events,” Shvetzoff Hennessey explains. Reality orientation may be logical and appealing for those without Capgras but is often frustrating and upsetting for individuals who are experiencing delusions.

Validation Therapy

Shvetzoff Hennessey says that reality orientation has largely been replaced by validation therapy, which supports the patient’s delusions rather than correcting or contradicting these very real ideas, thoughts and feelings. Validation techniques have been found to reduce stress and anxiety in both dementia patients and their loved ones.

For some sufferers, neither reality orientation nor validation techniques are successful, leaving both the patient and their loved ones frustrated, lonely and anxious. For these situations, a mixture of several techniques may be needed in order for both parties to enjoy spending time together. “By working with the patient’s care team, including direct care providers, physicians, social work professionals, pharmacists and therapists, techniques and strategies can be developed to relieve the symptoms in the patient, as well as reduce the stress and frustration of loved ones,” advises Shvetzoff Hennessey. “This can include communication techniques, medications, and creative problem-solving methods.”

Interactions and Caregiving

Research shows that time and interactions with loved ones who have Alzheimer’s or other types of dementia is valuable for both the patients and their caregivers. However, this delusional condition can make it difficult, if not impossible, for the patient and the believed impostor to interact. Some patients may blatantly refuse to speak or cooperate with the “impostor.” Changing the format, timing and length of visits may help in some cases.

“If the patient does not live with those they do not recognize, these loved ones may have to visit during certain times of the day when the patient is more relaxed,” Shvetzoff Hennessey recommends. “Impostors” may need to visit along with other people that the patient recognizes, or even visit as a stranger, but these options may still allow for interaction.

Shvetzoff Hennessy emphasizes that safety and wellbeing are paramount. “If the patient’s delusions make caregiving, living together and safety challenging, housing changes may be needed to ensure the emotional and physical health of everyone involved.” In such cases, placement in a specialized memory care unit might be the best option.

Care for Yourself, Too

Alzheimer’s and dementia caregivers already experience serious emotional and physical strain, and this is only compounded by the development of Capgras syndrome. “It is important for family members and caregivers of sufferers to care for themselves in order to better care for their loved ones,” Shvetzoff Hennessey urges. This self-care can include increased time away from the patient, self-acceptance of limitations and reliance on other support systems including friends, family, and community and healthcare resources.

Interacting with Someone Who Is Suffering from Delusions

Shvetzoff Hennessey offers family caregivers the following tips for interacting with a person who is experiencing Capgras syndrome.

  • Validate their feelings and concerns. Rather than challenging their perspective, make it clear that you understand how they are feeling and that it is perfectly acceptable for them to feel this way. Try to identify with their reality rather than correct it.
  • Make a safe, emotional connection. Dementia alone can be extremely confusing and disorienting for a patient. Adding delusions that someone they trust has been replaced with an identical fraud can be very frightening for them. Remind the patient of how much you love them and how much the “impostor” loves them. If the patient has additional misconceptions that this fake is trying to harm them or steal from them, gently reassure them that they are safe and you will not allow anything of the sort to happen.
  • Rely on auditory interactions. Since this disorder makes it difficult or impossible for sufferers to visually connect with loved ones, sound is the next best way to communicate. Rather than visiting face-to-face, try conversing over the telephone or just outside of their line of sight. If a patient has difficulty interacting in person, it can help for the impostor to announce themselves while still out of sight. This helps to establish an emotional connection and begin a conversation that continues while they come into sight. This may assist the patient in positively identifying their loved one.

Source: AgingCare.com

Hallucinations, Delusions and Paranoia Related to Dementia

Hallucinations, Delusions and Paranoia Related to DementiaHallucinations, Delusions and Paranoia Related to Dementia

According to the Alzheimer’s Foundation of America, the major psychiatric symptoms of middle stage Alzheimer’s disease and other forms of dementia include hallucinations, delusions and paranoia. About 40 percent of dementia patients experience delusions, while hallucinations occur in about 25 percent of cases. When a senior is experiencing hallucinations and delusions, their caregiver often wants to help them understand that these beliefs and experiences are not real.

 “It is not helpful to argue or rationally explain why something happened,” says Lisa P. Gwyther, associate professor in the Department of Psychiatry and Behavioral Sciences at Duke University and director of the Duke Aging Center Family Support Program. “It just frustrates the person. They somehow know that you are not taking their thoughts and feelings seriously.”

While reinforcing reality seems like the logical and kind thing to do, this natural instinct can be wrong. Family caregivers can ensure they’re prepared to handle these challenging behaviors by learning the differences between them and proper coping techniques for each one.

 Understanding the Differences

Hallucinations, delusions and paranoia are symptoms of disease and not a normal part of aging. While they may seem similar, they are actually very different.

Hallucinations are false sensory experiences that can be visual, auditory and/or tactile. These perceptions cannot be corrected by telling a patient that they’re not real. Examples include a dementia patient hearing music when none is playing or seeing bugs on a surface where there aren’t any.

Delusions are fixed false beliefs that are not supported by reality. They are often caused by a faulty memory. Examples include accusing caregivers of theft and infidelity.

Paranoia is centered around suspiciousness. Elderly individuals often project hostility and frustration onto caregivers through paranoid behaviors.

Coping with Hallucinations

When it comes to handling a senior’s hallucinations, Dr. Marion Somers, author of “Elder Care Made Easier: Doctor Marion’s 10 Steps to Help You Care for an Aging Loved One,” suggests joining them in their version of reality. Ask them about what they are experiencing as if it is real so that you can more effectively defuse the situation. Refrain from trying to explain that what they are seeing or hearing is all in their head. “Otherwise, you’re going to aggravate them, and you don’t want to increase the level of agitation,” says Dr. Somers.

Reassure them by validating their feelings. Say something like, “I see that you’re upset. I would be upset if I saw those things, too.” Tell them that they are safe with you and you will do whatever you can to help them feel secure.

A comforting touch, such as gently patting their back, may help the person turn their attention to you and reduce the hallucination, according to the Alzheimer’s Association. You also can suggest that they move to a different room or take a walk to get away from whatever may have triggered the experience.

Realize that some hallucinations, such as seeing children or hearing music, can be comforting. If the individual is reassured by a hallucination, caregivers don’t need to do anything to stop it, Gwyther says. “You only need to respond to things that are scary or disruptive or keep the person from getting adequate care,” she says.

In addition to dementia, poor eyesight, hearing loss, certain medications, and physical problems like dehydration and urinary tract infections (UTIs) can contribute to hallucinations. If all other factors are ruled out and a loved one’s hallucinations are disturbing and persistent, then antipsychotic medication may be prescribed to reduce them. However, Gwyther says these medications can present a risk for dementia patients. She recommends first changing the way you communicate during these episodes and changing the activity and environment to remove or reduce triggers.

The Alzheimer’s Association offers these tips to change the environment:

  • See if any lighting or lack of lighting casts shadows, distortions or reflections on walls, floors and even furniture that could contribute to visual hallucinations.
  • Listen for any sounds, such as TV or air conditioning noise, which could be misinterpreted.
  • Remove or cover mirrors if they could cause someone to think they are seeing a stranger.

Dealing with Delusions

Delusions among dementia patients typically result from their cognitive impairment. They occur when a senior tries to make sense of a situation, but their confusion and memory problems make it impossible. “They end up filling a hole in a faulty memory with a delusion that makes sense to them,” Gwyther says. For example, if a loved one cannot find their purse, they may decide that it is missing because someone stole it.

Delusions can be frightening for the person living with dementia, but they can also be very hurtful for caregivers when they are the accused. Recognize that the elderly individual is living in a world that doesn’t make sense to them and is likely scared. Do not take any accusations personally or respond with logical explanations. Instead, reassure the person and avoid asking questions that may cause more confusion. If they are looking for an item, tell them you will help them find it. In cases where a loved one regularly misplaces an item and becomes agitated over the loss, the Alzheimer’s Association recommends purchasing a duplicate of the item to quickly resolve the issue until the original is found.

Distraction is another strategy that dementia caregivers use in response to delusional thinking, but it may not work for every patient or every delusion. If a loved one is experiencing a mild delusion, offering a favorite snack or activity or asking them to tell you about an important experience in their life may be sufficient to redirect their attention. In cases where the person is very upset, reassurance may be the only viable option. Again, it is crucial to avoid rationalizing the situation and stress your commitment to their security and happiness.

Responding to Paranoia

Paranoia is less common than delusions and hallucinations but can still be very troubling. According to the Alzheimer’s Association, when paranoia occurs, caregivers can assess the problem by considering these questions:

  • What happened right before the person became suspicious?
  • Has something like this happened before?
  • Was it in the same room or at the same time of day?
  • Can this trigger be removed or altered to avoid eliciting suspicion?

If someone is experiencing paranoia, it is important to discuss their medications (prescription and over the counter drugs as well as vitamins) with their doctor. “Sometimes medications interact with one another or the dosages are too large,” notes Somers. “That can bring on paranoia, but a doctor can address problems and adjust the senior’s regimen to minimize issues.”

Recognizing the causes for all three behaviors and understanding what a loved one goes through while enduring hallucinations, delusions and paranoia can help you both keep calm and find solutions.

Source: AgingCare.com

Ask your doctor the right questions about your Alzheimer’s diagnosis

Just Diagnosed

Receiving a diagnosis of Alzheimer’s is never easy — it’s life changing. It is normal to experience a range of emotions. Acknowledging your feelings can be an empowering first step in coping with the challenges ahead.

Emotions you may have

You noticed symptoms. You made a doctor’s appointment. You took tests. And you felt a roller coaster of emotions — fear, hope, despair, denial. Then you received a diagnosis. You may have felt numb, unsure of how to respond or where to turn.

You also may be grieving over the present losses you are experiencing, or the expectation of future changes as the disease progresses. It can be helpful to identify and understand some of the emotions you may experience after receiving your diagnosis.

These emotions may include:

  • Anger. Your life is taking a different course than the one you and your family had planned. You cannot control the course of the disease.
  • Relief. The changes you were experiencing were cause for concern. A diagnosis validated these concerns by assigning a name to your symptoms.
  • Denial. The diagnosis seems impossible to believe. You may feel overwhelmed by how your life will change as a result of Alzheimer’s.
  • Depression. You may feel sad or hopeless about the way your life is changing.
  • Resentment. You may be asking yourself what you did to deserve your diagnosis or why this is happening to you and not someone else.
  • Fear. You may be fearful of the future and how your family will be affected.
  • Isolation. You may feel as if no one understands what you’re going through or lose interest in maintaining relationships with others.
  • Sense of loss. It may be difficult to accept changes in your abilities.

If these feelings linger week after week, you may be dealing with depression or anxiety. Feeling depressed or anxious about your diagnosis is common, but both can be successfully treated.

Taking care of your emotional needs

Coming to terms with your diagnosis and the emotions you are feeling will help you accept your diagnosis, move forward, and discover new ways to live a positive and fulfilling life.

You are the only person who can change how you feel about your diagnosis. So it’s important to find healthy ways to deal with your emotions. This can be difficult at the beginning. But once you make the commitment to take care of your emotional needs, you may find that you can rise to the challenge and face your diagnosis. This is a new phase of your life, and you can choose to experience it with sense of connection to your emotional health.

When working through your feelings, try a combination of approaches. The following tips may be helpful:

    • Write down your thoughts and feelings about your diagnosis in a journal.
    • You may find your friends and family struggling with your diagnosis and their feelings. Learn more about how you can help family and friends.
    • Share your feelings with close family and friends. Speak open and honestly about your feelings.
    • Surround yourself with a good support system that includes individuals who are also living in the early stage of the disease and understand what you’re going through. Join our ALZConnected message boards or learn more about support programs.
    • Join an early-stage support group. It can provide you with a safe and supportive environment of peers. To find a support group in your area, check with your local Alzheimer’s Association chapter.
    • Talk to your doctor if you or others are concerned about your emotional well-being. Your doctor can determine the most appropriate treatment plan to address your concerns.
    • Seek help from a counselor or clergy member. He or she can help you to see things in a new way and help you understand more fully what you are feeling.
    • If you are feeling misunderstood or stereotyped because of your diagnosis, learn what you can do to overcome stigma.
    • Stay engaged. Continue to do the activities you enjoy for as long as you are able.
    • Take the time you need to feel sad, mourn and grieve.
    • No two people deal with their diagnosis in exactly the same way. There is no right approach. Some days may be more difficult than others, but don’t be discouraged. Learn coping tips to help you manage challenges.

You are not alone

A diagnosis of Alzheimer’s disease can leave you feeling disconnected, isolated or abandoned from others. You may feel unsure of where to turn and that no one can possibly understand what you’re going through. People living with early-stage Alzheimer’s have stated that one of the most important lessons they learned early on in their diagnosis is this: they could not just wait for others to help them – they had to go out and help themselves to the best of their ability.

Whenever facing difficult times, having a good support network you can turn to for advice and encouragement may help you feel socially connected and give you a sense of belonging and purpose. Make sure your network includes other people who are living in the early stage of the disease. Connecting with others like you may help put your own experiences living with the disease in perspective, and provide you with the support and encouragement necessary to move beyond your diagnosis.

Questions for your doctor

After receiving your diagnosis, it’s normal to leave your doctor’s office unsure of what questions to ask. You just received life-changing news, and you need time to absorb this information and understand what it means for you and your family.

Your doctor is an important member of your care team. Use the opportunity to ask your doctor questions about your diagnosis, all the available options, and the benefits and risks of each choice you make.

You may be asking: “How do I know what to ask my doctor?”

Members of our Alzheimer’s Association National Early-Stage Advisory Group have shared their own experiences and questions they wish they had asked their doctors. You may find this information helpful as you develop your own list of questions.

Download these questions and others as a PDF

Example questions:

The diagnosis of Alzheimer’s disease

  1. What test(s) or tools did you use to determine my diagnosis?
  2. What are you measuring with the tests you performed?

Alzheimer’s disease

  1. How will the disease progress?
  2. What can I expect in the future?

Treatments

  1. What treatment options are available?
  2. Which symptoms are being targeting by each medication?

Clinical trials

  1. What clinical trials are available?
  2. Where can I find published information about clinical treatment studies?

Care team

  1. How familiar are you with Alzheimer’s disease? Will you be managing my care going forward?
  2. If I need to be hospitalized, will you be able to provide care in this setting?

Care and support

  1. What resources are available to help me learn more about my diagnosis? My family?
  2. What support services are available to help me live well with the disease, for as long as possible?

Source: alz.org

Your Complete Guide to Medicare Open Enrollment

Your Complete Guide to Medicare Open EnrollmentWhat is Open Enrollment?

The Medicare Open Enrollment Period is an annual period of time (October 15 through December 7) when current Medicare users can choose to re-evaluatepart of their Medicare coverage (their Medicare Advantage and/or Part D plan) and compare it against all the other plans on the market. After re-evaluating, if you find a plan that is a better fit for your needs, you can then switch to, drop or add a Medicare Advantage or Part D plan. Medicare Advantage is also known as a “Part C” plan.

You cannot use Open Enrollment to enroll in Part A and/or Part B for the first time. For more information on all of the parts of Medicare, and when you can enroll in them, visit our Medicare coverage map.

Still confused about Open Enrollment? Try taking our Medicare Questionnaire assessment, which can connect you to free professional advice about Medicare from a licensed benefits advisor (who abides by our Standards of Excellence).

What you can do during the Open Enrollment Period (OEP):

  • Anyone who has (or is signing up for) Medicare Parts A or B can join or drop a Part D prescription drug plan.
  • Anyone with Original Medicare (Parts A & B) can switch to a Medicare Advantage plan.
  • Anyone with Medicare Advantage can drop it and switch back to just Original Medicare (Parts A & B).
  • Anyone with Medicare Advantage can switch to a new Medicare Advantage plan.
  • Anyone with a Part D prescription drug plan can switch to a new Part D prescription drug plan.

When is Open Enrollment?

Open Enrollment is from October 15th through December 7th every year. If you use the Open Enrollment period to choose a new Medicare Advantage or Part D plan, that new coverage will begin on January 1.

Worried about forgetting when Open Enrollment starts and ends? You can sign up for reminders here, or just add your email into the “Get Reminded” box on this page.

Why should I consider re-evaluating my current Medicare coverage during Open Enrollment?

Unfortunately, choosing health insurance is no longer a one-time decision for most Medicare beneficiaries. Each year, insurance companies can make changes to Medicare plans that can impact how much you pay out-of-pocket—like the monthly premiums, deductibles, drug costs, and provider or pharmacy “networks.” A network is a list of doctors, hospitals, or pharmacies that negotiate prices with insurance companies. They can also make changes to your plan’s “formulary” (list of covered drugs). Given these yearly changes, it is a good idea to re-evaluate your current Medicare plan each year to make sure it still meets your needs. Below are some additional benefits of re-evaluating your coverage during Open Enrollment:

  1. You can switch to better prescription drug coverage. Using Open Enrollment to switch your drug coverage—or add drug coverage for the first time—can make crucial medications that you need less expensive. It can also ensure that your drug plan still covers the drugs you need (as your prescriptions may not be included on your plan’s formulary for next year).
  2. You can save money and keep your doctor in-networkSwitching your Medicare Advantage or Part D plan can potentially save you hundreds of dollars a year—especially if your current plan’s out-of-pocket costs will increase next year. Research shows that the average consumer can save $300 or more annually if they review their Part D coverage. One way to lower your medical costs is to check that your current doctors, hospital, and pharmacy are “in-network” with whatever Medicare Advantage or Part D plan you choose. If your insurance company has changed your plan’s provider or pharmacy network for next year (and your doctor or other resources will no longer be included), you can use Open Enrollment to switch to a plan that will include your current doctors, hospital and/or pharmacy in-network, thereby lowering your medical costs.
  3. You can find a higher quality plan. Finally, check the quality of your plan using the Medicare 5-star ratings system. Plans with a 5-star rating are considered high quality and those with fewer than 3 stars are considered poor quality. If your current plan is ranked as less than a 3, consider using Open Enrollment to switch to a higher rated plan.

Next Steps: How do I re-evaluate my current Medicare coverage during Open Enrollment?

Interested in re-evaluating and/or switching your current Medicare coverage? We recommend one of the three options below:

  1. Take our quick Medicare Questionnaire. It can connect you to free professional counseling from a licensed benefits advisor at Aon Retiree Health Exchange (our trusted partner who abides by the NCOA Standards of Excellence).
  2. Use the plan finder tool on Medicare.gov. This is the official U.S. government site for Medicare.
  3. Contact your local SHIP (State Health Insurance Assistance Program). SHIPs provide federally-funded Medicare counseling through a trained staff member or volunteer.

When you have chosen a plan that’s best for your situation, you’ll need to provide your Medicare number and the date your Part A and/or Part B coverage started. This information is on your Medicare card. In general, you need to be careful about when you give out your personal Medicare information (see “5 Steps for Avoiding Medicare Scams“), but this is a situation when licensed advisors in a trusted setting can help you make a beneficial change.

Questions about Medicare?

Get answers now

Source: My Medicare Matters/National Council on Aging