2015 Special Edition
Alzheimer’s Awareness
Make Safety Your Priority You Can’t Prevent Alzheimer’s, But You Can Avoid Some of Its Dangers Our Mission:
To eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.
Make Safety Your Priority
Make Safety your Priority Safety is important for everyone, but taking specific precautions becomes vital as dementia progresses. By putting measures in place, you can prevent injuries and help the person with Alzheimer’s feel comfortable. We have focused this publication on major issues associated with keeping your loved ones safe including; talking about driving after a diagnosis, Elder abuse, assess your home for safety concerns and wandering. Please enjoy this publication, refer to it often, or pass it on to a neighbor or loved one in need. Feel free to call us with questions. We are here to help.
Alzheimer’s Association, California Central Chapter
Sincerely,
Santa Barbara
1528 Chapala Street, Suite 204 Santa Barbara, CA 93101 805.892.4259
Santa Maria
120 East Jones Street, Suite 113 Santa Maria, CA 93454 805.636.6432
Ventura County
2 Sunday, June 28, 2015 / Alzheimers Awareness Guide / Lee Central Coast Newspapers
145 Hodencamp Road, Suite 205 Thousand Oaks, CA 91360 805.494.5200
San Luis Obispo County
3232 S. Higuera Street, Suite 101A San Luis Obispo, CA 93401 805.547.3830
alz.org/cacentral
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Alzheimer’s Association, California Central Chapter
@AlzCentral
Alzheimer’s Association, California Central Chapter
Donna Beal, MPH, MCHES
Pictured (left to right): Donna Beal, Rayleen Moran, Sonya Laputz
Year Established The Alzheimer’s Association, California Central Chapter was established in 1984.
Service Area
Vice President, Program Services & Advocacy Alzheimer’s Association California Central Chapter www.alz.org/cacentral 24 Hour Hotline: 1-800-272-3900 Longest Day, Blondes vs. Brunettes, the Alzheimer’s Association Professional Education Conference, and the Alzheimer’s Women’s Initiative Luncheon ‘Your Brain Matters’.
Join the Alois Society: Membership in the prestigious Alois SociWe provide a full range of free ety, with an annual gift of $1,000 or and vital services to more than more, provides the opportunity to be 30,000 families through offices in Santa Barbara, Ventura, and San Luis at the forefront in the fight against the disease and helps us move closer Obispo Counties. Many of those to a world without Alzheimer’s services are available in Spanish. Join the Aspire Society: With a Mission gift of $10,000 or more, you can be To eliminate Alzheimer’s disease a part of our global society of major through the advancement of redonors, supporting a wide range of search; to provide and enhance care strategically important initiatives to and support for all affected; and to advance the effort to end Alzheimreduce the risk of dementia through er’s disease. the promotion of brain health. Join the Founders Society: The Volunteer Opportunities Founders Society honors those who have remembered the Association in We need you! We offer a wide their estate plans. For many suprange of volunteer opportunities, from helping with a special event to porters, estate gifts offer the greatest potential to change the future of serving as a support group facilitaAlzheimer’s disease. tor. If you are interested in volunteering, please contact your local Alzheimer’s Association office to learn more about how you can utilize your talents to make a difference in the fight to end Alzheimer’s.
Giving Opportunities Sponsor a special project or major event: You or your company or foundation can help launch or grow special projects with the power to transform the future of Alzheimer’s. You can also be a part of high-profile events such as the Walk to End Alzheimer’s, The
Every gift moves us closer to our vision of a world without Alzheimer’s. Thank you for considering how you can make the greatest difference. To learn more, please contact Mitchel Sloan, Vice President of Development & Communications at 805.892.4259, x102 or at msloan@ alz.org.
Programs Our vital and free program services include: Education for Caregivers and Professionals
Information and Referrals Support Groups Family Care Consultations Community Awareness Our Association is the largest private or nonprofit funder of Alzheimer research in the world, providing more than $315 million to more than 2,200 scientific investigations since our inception. For more information, please contact Donna Beal, Vice President of Program Services & Advocacy at 805.892.4259, x107 or at dbeal@alz.org.
BOARD OF DIRECTORS
Danna McGrew, Chair Robert Short, Vice Chair Simone Lagomarsino, Treasurer Michael Hellman, Secretary Sharon Bick Jeff Branco Leigh Cashman Katina Etsell Jessica Foster Kiersten Hess Robert Hirsch Kenneth Kosik, M.D. Richard Mann Dana Newquist Lol Sorenson Amanda Valenzuela Teresa Valko William Vasquez Lew Watkins Sharon Kennedy, Emeritus Charlie Zimmer, Emeritus
Make Safety Your Priority
Recent Breakthroughs in Alzheimer’s Research By Dylan Ginoza / Development Associate, Alzheimer’s Association California Central Chapter
zheimer’s disease. An observational study conducted over six years showed a correlation between low levels of vitamin D and Alzheimer’s disease. Vitamin D has been linked to problems with blood vessels in the brain as well as other blood-brain pathways. However, it is still unclear whether low levels of vitamin D are directly a part of Alzheimer’s disease, or merely a result of having the disease. Vitamin D can be obtained through exposure to sunlight or through diet in fatty fish, cheese, egg yolks, and beef or calf liver. Another small study on diet and Alzheimer’s found that flavanol may help improve brain function. Flavanol can be extracted from cocoa beans, fruits, and tea. Since flavanol is extracted from cocoa beans, the media misleadingly reported that eating chocolate can help reduce risk of Alzheimer’s. This is not the case because most flavanol is lost in the production of chocolate, especially milk chocolate. Flavanol’s brain-boosting effects are enhanced when paired with physical activity. There is a lot of research currently being done, and it is exciting to see the progress that has occurred even in the past two years. Although we are waitof the tau tangles that lead to Alzheimer’s ing for a cure, there are still ways you in the clinical trials, which shows great potential for the drug to treat Alzheimer’s disease dementia. The scientists used can reduce your risk and make the most the test tube model to look at drugs to disease. Although these results show out of your years. The best evidence encouraging potential, additional testing prevent the formation of amyloid, the right now to reduce risk of dementia is needed in larger amounts of people for protein that clumps into plaques. The is to maintain regular physical activity longer amounts of time. The Alzheimer’s drugs prevented both plaques and tangles in combination with social and mental from forming. The scientists identified Association encourages the commustimulation. Other lifestyle aspects that an enzyme needed to make tangles after nity to get involved with clinical trials, may contribute to healthy brain aging are plaques are present. When they blocked because the more support we have for being socially active, being mentally acresearch, the closer we become to finding that enzyme, plaques formed but not tive, eating a brain-healthy diet and not tangles. The enzyme is another potential smoking. If we want to unravel the quesa way to prevent or treat the disease. drug target, according to the scientists, In other recent research, scientists tions regarding Alzheimer’s disease in used cutting-edge techniques to investi- and studies on that will be conducted in terms of its causes, risks, treatment, and gate how Alzheimer’s begins in the brain. the future. Regardless, the innovative prevention, we must work together as a techniques used by the scientists have Scientists have grown human brain cells community and show a greater commitin a test tube and observed the growth of brought us much closer to understanding ment to research. In order to reach our the causes of Alzheimer’s disease. amyloid plaques and tau tangles. These goal of A World Without Alzheimer’s, we need your support! For more information Our lifestyle decisions have a huge two characteristics are the recognized and to get involved, go to www.alz.org. impact on our risk for developing Alhallmarks of Alzheimer’s disease. The on patients with high levels of amyloid buildup in the brain. Most importantly, it has been proved to be safe and tolerable for patients with Alzheimer’s, meaning that there are no unwanted side effects associated with the current form of this medication. Secondly, the trials showed a significant reduction in amyloid plaques and a slowing in decline of memory and thinking abilities. This was an unexpected finding for the drug this early
gene for the rare early-onset form of Alzheimer’s, APOE-e4, was used in these brain cells for the study. Although most of those affected by Alzheimer’s have the late-onset form, the fact that the disease can be studied in human cells could accelerate drug discoveries and lower risk of failure and raise the potential for success when drugs are taken to clinical trials. The study supports the idea that amyloid buildup alone causes the growth
Lee Central Coast Newspapers / Alzheimers Awareness Guide / Sunday, June 28, 2015
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According to the 2015 Alzheimer’s Association Facts and Figures report, one in every three seniors dies with or from Alzheimer’s disease or another form of dementia. Although this statistic has remained the same since I started writing about Alzheimer’s two years ago, there has been a great deal of progress in our understanding of Alzheimer’s disease. There have been promising findings on the ways Alzheimer’s begins manifesting itself in the brain as well as how our lifestyles affect our risk of getting Alzheimer’s. Yet, the battle is not over; there is still no known method to stop or slow the disease. The Alzheimer’s Association and the Alzheimer’s community helped the United States government pass the National Plan to address Alzheimer’s Disease in 2012 with the critical goal of preventing and effectively treating Alzheimer’s by 2025. Until we reach that goal, we need the support of the Alzheimer’s community in research as well as promoting a healthy community lifestyle. One of the most recent studies on potential therapies for Alzheimer’s disease is still in the early stages of testing. A study was performed on mice regarding the EP2 protein, which grows on microglia. Microglia are responsible for managing inflammation and the anti-inflammatory response in the brain. Mice without the EP2 protein were better than mice with the protein at object recognition and navigating a maze experiment. Also, mice without the EP2 protein had lower levels of amyloid in their brains, and when amyloid was injected, they were better at clearing it from their brains. Additional testing will be required before the therapy is taken to clinical trials in humans. Other recent studies on Alzheimer’s disease dealt with potential pharmaceuticals. The aducanumab drug recently completed its phase 1b clinical trials with promising results. The drug was tested
4 Sunday, June 28, 2015 / Alzheimers Awareness Guide / Lee Central Coast Newspapers
Make Safety Your Priority
Lori Gross, Owner
Make Safety Your Priority
When is it time to stop driving?
By Luciana Cramer / Educator and Care Specialist, Alzheimer’s Association California Central Chapter
for signs of unsafe driving such as driving too slow or stopping for no reason, making turns from the wrong lane, turning in front of other cars, backing up or changing lanes without looking back or checking mirrors. Unexplained dings and dents around the vehicle are clear indicators that driving is no longer safe. The third level of defense is the doctor. In California, physicians are required by law to report disorders characterized by lapses of consciousness, as well as Alzheimer’s disease and related disorders. Commercial drivers over 65 are required to pass an annual physical to keep their Tools: licenses. Alzheimer’s Association Dementia & Driving Resource Center: Car companies are also concerned alz.org/care/alzheimers-dementia-and-driving.asp about driving safety as we age. Many AARP Driver Safety Program: companies are studying and implementaarp.org/home-garden/transportation/driver_safety/ ing features that make driving safer for older drivers, such as rear-view cameras AAA Interactive Driving Evaluation: seniordriving.aaa.com/ and crash avoidance features. Although the vast majority of accidents Physician’s Guide to Assessing and Counseling Older Drivers: involving unfit drivers are minor fender nhtsa.gov/people/injury/olddrive/OlderDriversBook/ benders, accidents with fatalities also occur in large numbers. Unfit driving is Caregiver Tips: a matter of public safety and effective • Reduce the need to drive by having medicines, groceries or meals delivered. policies to better ensure drivers’ fitness • Transition driving responsibilities to others. Arrange for family members and friends to provide would closely resemble the criteria for transportation. commercial drivers in California. But until we have those policies in • Arrange a taxi service. Or use special transportation services for older adults. place, it is up to each individual and the • Ask your physician to advise the person with dementia not to drive and write a prescription community to ensure safe driving. Don’t that says, “No driving.” hesitate to look for help if you suspect • Substitute his or her driver’s license with a photo identification card. unsafe driving. The AARP offers a Driver • Don’t assume that taking away a driver’s license will discourage driving. The person may Safety Program at sites around the counnot remember that he or she no longer has a license to drive or even that he or she needs a try and online. Relatives and acquainlicense. tances may also request that the DMV review one’s driving ability by completing • Disable the car. Remove the distributor cap or the battery or starter wire. Ask a mechanic to a Request for Driver Reexamination (form install a “kill switch” that will prevent the car from starting unless the switch is thrown. Or give the person a set of keys that looks like his or her old set, but that don’t work to start the car. DS 699) or writing to the local Driver Safety Office. Driving in America is synonymous with independence and a measure of of chaos, causing 4 accidents as motorists a first level of defense, to evaluate their self-worth. Giving-up driving is reportown driving abilities. A majority of older swerved and scrambled to avoid hitting her. Mrs. Phillips’ vehicle was unscathed edly the most difficult decision a person drivers decide by themselves to give up driving — over 600,000 a year, according and she did not even realize why she was can make, and it will affect their whole to the American Journal of Public Health. being stopped. Fortunately, there were no way of life. Families and friends should be prepared to provide alternative ways fatalities in this case. Dementia however, also compromises When self-assessment fails, the second of transportation and emotional support the ability of self-assessment, and most level of defense is the driver’s family, who for when driving is no longer possible, drivers with dementia fail to realize that to address feelings of lost autonomy or can monitor driving abilities, evaluate their driving is unsafe. Consequently, depression. fitness, and need to be ready to make the drivers with Alzheimer’s dementia often And remember: giving-up driving is very tough decision of taking away the continue driving after they have been never too inconvenient when compared keys. While riding as passengers within advised to stop or even after they have to the tragedy of a fatal accident. Be safe! the vehicle, family members should look had a crash. If allowed to continue drivsituation. Studies have shown that even though people in the early stages of dementia may be capable of driving under normal conditions, they have difficulty responding to new or challenging circumstances, and they are also at risk to becoming lost while driving. As dementia progresses into the middle stages, the ability to drive safely becomes highly compromised. Until we have an implemented, more reliable system of evaluating driving fitness, it is left to drivers themselves, as
ing, 30 percent of drivers with dementia would have a crash under normal driving circumstances at the middle stages of the disease, as estimated by Researchers at Washington University in St. Louis. A cognitively impaired driver is also more likely to cause an accident without noticing it or becoming involved in it. In 2009, 84-year-old Lois Phillips was on her way to the dentist when she drove for several miles on the wrong way in the fast lane of I-95 in Philadelphia. Before being stopped by the police she had left a trail
Lee Central Coast Newspapers / Alzheimers Awareness Guide / Sunday, June 28, 2015
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In October 2003, 86-year-old George Russell Weller, staring straight ahead and holding a firm-grip on the steering wheel, plowed his 1992 Buick Le Sabre through 1,000 feet of a crowded farmers market in Santa Monica, CA. Since then the debate over elder driving has intensified. The tragedy, one of the worst traffic accidents in U.S. history, left 10 people dead and 63 seriously injured. Catastrophic accidents like Weller’s are rare, but records show that fatality rates for drivers begin to climb after age 65. The rate of deaths involving drivers age 75 to 84 is about three per million miles driven – similar to teen drivers. Once they pass age 85, vehicular fatality rates jump to nearly four times that of teens. There are now over 2 million drivers in that category on our roads. The numbers will increase as our baby-boom population ages. While most of the discussion surrounding elder drivers revolves around the issue of age, and since no one can come to a figure of how old is too old to drive, states have struggled to produce effective legislation to make our roads safer. In many states, older drivers are required to appear in person to renew their licenses. Some form of medical evaluation is required in only 4 states (Maryland, Nevada, New Mexico and the District of Columbia). Road tests, which can be crucial in evaluating physical ability or mental awareness, are only required in Illinois and New Hampshire. In 18 states there are no restrictions at all. A more productive approach would focus not on age but on fitness. Normal aging does cause physical problems that may affect driving, such as diminished visual and auditory acuity, slower reflexes and lack of flexibility. However, we all age at different rates, and even the onset of dementia occurs differently in every affected person. Notwithstanding physical impairments caused by normal aging, dementia patients have additional deficiencies in perception and visual processing; ability to pay attention for extended periods of time; ability to respond to multiple stimuli at once; ability to make correct judgments (such as which drivers have the right of way); and ability to react appropriately when pressured in a traffic
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6 Sunday, June 28, 2015 / Alzheimers Awareness Guide / Lee Central Coast Newspapers
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Make Safety Your Priority
Wandering: You can’t know when it will happen, but you’ll know what to do when it does. By Sonya Laputz / Educator and Care Specialist, Alzheimer’s Association California Central Chapter PAL is that it will protect and locate your “At Risk” loved one if they wander. How it works: Along with the digital watch/transmitter PAL also has a portable receiver which notifies the caregiver of a wandering event through the use of GSM & GPS technologies. If an “At Risk” individual wearing a PAL watch/transmitter breaches the PAL RF Perimeter the PAL portable receiver will sound an audible alert and the LCD display will flash red indicating your loved one has wandered from the RF Perimeter you have set. PAL will generate an email alert
and send an SMS (text message) with the date and location of the wandering event. For the caregiver’s convenience, PAL also has an internet portal available that is accessible worldwide from any PC or smart phone and allows for real time tracking with regular location updates. To learn about Project Lifesaver enrollment, please visit www.projectlifesaver.org. Enrollment includes includes the lease of one 60 day transmitter and tester, and a one year supply of batteries and bands in the amount of $95.00 initial cost + $25 monthly fee.
TAKE CONTROL
©2010 Alzheimer’s Association. All Rights Reserved.
BY TAKING PART.
Introducing Alzheimer’s Association TrialMatch™ – Our Clinical Studies Matching Service. Far too many Americans have Alzheimer’s disease, currently an estimated 5.4 million people. That number is expected to triple by 2050. Volunteering for clinical trials is one of the most immediate ways you can make a difference, not only for yourself, but also for generations to come. Without volunteers, finding a cure is virtually impossible. With so many new treatments being developed, chances are there are Alzheimer’s clinical studies going on near you. Alzheimer’s Association TrialMatch will help you find the right one; there’s no cost and it’s easy to use. Be a hero and get started today. Talk to your doctor, call 800.272.3900 or visit alz.org/trialmatch.
alz.org/trialmatch | 800.272.3900
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chapters and law enforcement agencies, to help reunite the family member or caregiver with the person who wandered. If a citizen or emergency personnel finds the member, they can call the toll-free number listed on the member’s ID jewelry. MedicAlert + Safe Return will notify the member’s listed contacts, making sure the person is returned home. To join, contact 1.888.572.8566 or visit www.medicalert.org/safereturn and register online. Cost is $49.95 + $4.95 for shipping and handling fee. 2) Alzheimer’s Association Comfort Zone® is a comprehensive web-based location management service. Families can remotely monitor a person with Alzheimer’s by receiving automated alerted throughout the day and night when a person has travelled beyond a preset zone. How is work: A person with Alzheimer’s wears or carries a locator device (such as a pager or wrist-worn device) or mounts one in his or her car. As the person travels around town or the country, the device receives signals from satellites or nearby cell towers. The device can then approximate the person’s location by measuring the distance between the device and the cell towers or satellite signals. The device communicates with the Comfort Zone Web application. Family members access information about the person’s location by using the Internet or calling the monitoring center. Families can also decide on the level of monitoring needed, such as verifying location from a computer; receiving alerts when the person has traveled in or out of a zone; or just emergency assistance if there is a wandering incident. Comfort Zone plans start at $42.99 per month plus a $45 activation fee. A Comfort Zone plan is designed specifically to each device. For more information about Comfort Zone® or Comfort Zone Check-In® visit alz.org/comfortzone. 3) Project Lifesaver’s PAL (Protect And Locate) tracking system is both a tracking devise and a digital sports watch. PAL is worn on the wrist just like a normal wrist watch. The difference with
Lee Central Coast Newspapers / Alzheimers Awareness Guide / Sunday, June 28, 2015
Did you know that six out of 10 people with Alzheimer’s will wander? It is common for a person with dementia to wander and become lost; many do repeatedly. Wandering can be dangerous – even life threatening. The stress can weigh heavily on caregivers and family. Anyone who has memory problems and is able to walk is at risk for wandering. Even in the early stages of dementia, a person can become disoriented or confused for a period of time. It’s important to plan ahead for this type of situation. Be on the lookout for the following warning signs: • Returns from a regular walk or drive later than usual • Tries to fulfill former obligations, such as going to work • Tries or wants to “go home,” even when at home • Is restless, paces or makes repetitive movements • Has difficulty locating familiar places like the bathroom, bedroom or dining room • Asks the whereabouts of current or past friends and family • Acts as if doing a hobby or chore, but nothing gets done (e.g., moves around pots and dirt without actually planting anything) • Appears lost in a new or changed environment Wandering among people with dementia is dangerous, but there are strategies and services to help prevent it. The Alzheimer’s Association and Project Lifesaver offer programs designed to assist in the monitoring and return of those who wander: 1) MedicAlert® + Alzheimer’s Association Safe Return® is a 24-hour nationwide emergency response serve for individuals with Alzheimer’s or a related dementia who wander or have a medical emergency. 24-hour assistance is provided, no matter when or where the person is reported missing. How it works: If an individual with Alzheimer’s or a related dementia wanders and becomes lost, caregiver can call the emergency response line to report it. A community support network will be activated, including local Association
Make Safety Your Priority
California Law Helps Long Distance Care-Giving By Donna K. Beal / Vice President of Program Services and Advocacy, Alzheimer’s Association California Central Chapter
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Moving freely from state to state across the country is a right that most Americans take for granted. But those state lines can become unexpected barriers when families need the legal powers of a guardianship to help care for aging relatives. That’s why the California Council of the Alzheimer’s Association is celebrating recently enacted legislation that will make it easier to establish and transfer guardianship of adults across some state lines. The Uniform Adult Guardianship and Protective Proceedings Jurisdiction Act (UAGPPJA) establishes guardianship rules that transcend state boundaries and creates channels for better communication when more than one jurisdiction is involved. “The Alzheimer’s Association relentlessly advocates for key legislative bills for people living with Alzheimer’s disease and their families,” says Donna Beal, Vice President of Program Services and Advocacy, Alzheimer’s Association California Central Chapter. “We thank our Alzheimer’s advocates throughout California for joining us at Advocacy Day in Sacramento and for their letter writing, emails and phone calls to state lawmakers.” California joins 41 other states and U.S. territories that have approved the measure, and action is expected in other states soon.
UAGPPJA was introduced in the California Senate by Hannah-Beth Jackson, a Democrat from Santa Barbara, and signed by Governor Jerry Brown in September 2014. It will take full effect on January 1, 2016. Adult guardianships often involve Alzheimer’s patients or adults with other health issues that impair a person’s judgment. When a person can no longer make sound decisions, a court can appoint a guardian—often a family member—to take actions regarding the individual’s health, well-being and economic interest. Currently, the process of appointing a guardian in the U.S. is handled in 55 state and territorial courts. When multiple states or territories are involved, it may be unclear which state court has jurisdiction to hear and decide the legal issues. For example, a California man whose mother resides in Illinois could find it difficult to obtain the guardianship rights he needs to authorize her medical treatments. Without common guidelines, transferring a guardianship from one state to another can be a time-consuming and expensive process, even when all parties agree. A woman who holds guardianship rights for her husband in Colorado would have to reapply for those rights if she moved to be closer to her children
in Nevada. UAGPPJA provides solutions to these and related problems, which is why the Alzheimer’s Association, AARP, the American Bar Association, and other organizations want to see it passed in all U.S. states and territories. According to the National Guardianship Association, issues caused by simultaneous and conflicting guardianship jurisdictions have been growing rapidly in recent years. The problems are expected to continue as rising rates of Alzheimer’s disease lead to an
increased demand for guardians at a time when families are more and more likely to be scattered across the country. The AARP says UAGPPJA would create a clear process for determining which state has jurisdiction to appoint a guardian and establish clear rules to allow both state courts to communicate. The act also outlines a procedure for transferring a guardianship to another participating state and helps facilitate enforcement of guardianship and protective orders across state lines.
More information about UAGPPJA and the efforts to enact it in all U.S. states and territories can be found at: National Guardianship Association: www.guardianship.org/uagppja.htm Uniform Law Commission: www.uniformlaws.org/Narrative.aspx?title=Why%20States%20Should%20Adopt%20UAGPPJA AARP: blog.aarp.org/2013/10/14/caregiving-across-state-lines/ Alzheimer’s Association fact sheet and map: act.alz.org/site/DocServer/2012_UAGPPJA.pdf?docID=1821 act.alz.org/site/DocServer/UAGPPJAMap.pdf?docID=1521 Full Senate bill: www.leginfo.ca.gov/pub/13-14/bill/sen/sb_0901-0950/sb_940_bill_20140925_chaptered.pdf
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Make Safety Your Priority
What to expect during a hospital stay By Sonya Demeter
I am hopeful that writing about my experience at a local hospital will alert other caregivers of potential problems if their loved one with dementia has to be hospitalized, and that this article might facilitate some changes. A trip to the hospital with a person who has memory loss or dementia can be stressful for both of you. There are steps you can take now to make hospital visits less traumatic and your loved one more comfortable once you arrive at the hospital. My husband John developed a seizure disorder when he was in the middle stage
of Alzheimer’s disease. He was taken to the ER and admitted for observation. I completed all the admission paperwork, making sure to indicate that he had an Alzheimer’s disease diagnosis. Fortunately, I was able to stay with John for the two days of his stay, although I went home after he was settled down to sleep at night and took short breaks during the day. I was alarmed to find that despite the information on his chart and my verbal information to his nurses, no allowance was made for his disability. John was friendly and cooperative (except when he was just
EMERGENCY BAG
Pack an “emergency bag” containing the following: Personal Information Sheet: Supplies for the patient:
Paperwork:
Supplies for the Caregiver: • A change of clothing, toiletries and personal medications • Pain medicine such as Advil, Tylenol or aspirin. A trip to the emergency room may take longer than you think. Stress can lead to a headache or other symptoms. • A pad of paper and pen to write down information and directions given to you by hospital staff. Keep a log of your loved one’s symptoms and problems. You may be asked the same questions by many people. Show them what you have writ-ten instead of repeating your answers. • A sealed snack such as a pack of crackers and a bottle of water or juice for you and your care partner. You may have to wait for quite awhile. • A small amount of cash • Put a reminder note on the outside of the “emergency bag” to take a cell phone with you. • By taking these steps in advance, you can reduce the stress and confusion that often accompanies a hospital visit, particularly if the visit is an unplanned trip to the emergency room.
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Include copies of important documents such as: • Insurance cards (include policy numbers and pre-authorization phone numbers) • Medicaid and/or Medicare cards • Durable Power of Attorney, Health Care Power of Attorney, Living Will and/or an original POLST (Physician Ordered Life Sustaining Treatment)
• A change of clothing, toiletries, and personal medications • Extra adult briefs (e.g., Depends), if usually worn. These may not be available in the emergency room if needed • Moist hand wipes such as Wet Ones. Plastic bags for soiled clothing and/or adult briefs • Reassuring or comforting objects • An iPod, MP3 or CD player; earphones or speakers
he had lived for forty years, and getting lost in his own yard. Our experience was not tragic, but it could have been and I am incredulous that staff at the hospital have apparently not had training on how to work with patients who have dementia. Although he was still able to eat by himself as the time, John needed prompting and help to get started. His meals were brought to him, with a cover over the entrée, and left in front of him. I had to uncover it, open his milk carton, insert the straw and encourage him to begin. Without this help, he would not understand how to begin. Any instructions given to an Alzheimer’s patient may not be understood or remembered. It is very important, I think, to caution medical staff that an Alzheimer’s patient in early and middle stages of the disease will look and act quite normal and may even purposely conceal their condition out of embarrassment, but they will still not be able to follow directions or even remember them. John was not able to speak more than single words at that time, but he was able to fool many people by nodding and greeting everyone with a handshake and a smile. With Alzheimer’s disease and related dementias, it is wise to accept that hospitalization is a “when” not an “if” event. Due to the nature of the disease, it is very probable that, at some point, the person you are caring for will be hospitalized. Medical facilities are not typically well designed for those with dementia, and advance planning and preparation can make all the difference. For the safety of everyone, I recommend that a caregiver or family member stay with a loved one with dementia during any hospital stay.
Lee Central Coast Newspapers / Alzheimers Awareness Guide / Sunday, June 28, 2015
Create a document that includes the following information on your care partner: • Preferred name and language (some people may revert to native languages in late stage Alzheimer’s disease) • Contact information for doctors, key family members, minister and helpful friends (also program into cell phone, if applicable) • Illness or medical conditions • All current medicines and dosage instructions; update whenever there is a change • Any medicines that have ever caused a bad reaction • Any allergies to medicines or foods; special diets • Need for glasses, dentures or hearing aid • Degree of impairment and amount of assistance needed for activities • Family information, living situation, major life events • Work, leisure and spiritual history • Daily schedule and patterns, self-care preferences • Favorite foods and music; touch and visual resources • Highlight behaviors of concern; how your relative communicates needs and expresses emotions
coming out of a seizure and was being loaded into the ambulance) and at this stage of the disease he showed no outward signs of disability, but he was certainly impaired, as I told the nurses. Even so, two different nurses on different shifts treated him as though he would remember everything they told him. They told him that since he had had a seizure, he was not to get out of bed without assistance. The first nurse showed him how to operate the TV and how to call a nurse to help him when he needed to use the bathroom. He smiled and nodded. I watch in utter disbelief. I said to the nurse, “He won’t remember that, I’ll help him.” She smiled condescendingly. I did help him to the bathroom once, but I returned from a break later, in time to witness John, dragging his apparatus behind him and his nurse scolding him. She kept saying, “No John, I told you that is not safe,” as he looked at her confused. The next day, I returned to find John once again out of bed, not hooked up to anything this time, looking around the room, so I helped him find the bathroom. A nurse arrived and politely told me that a nurse needed to be present whenever he got out of bed. I told her that I had just arrived and there was no nurse in sight and she answered, “He knows he’s supposed to push the call button.” I tried again to explain that he could not do that by himself because he could not remember how to do it. She walked him back to bed without comment. I made sure to stay with John for the duration of his stay, all the time thinking of how he had begun to wander at home, sometimes getting lost in the house where
Make Safety Your Priority
Elder Abuse is a Crime By joyce ellen lippman Central Coast Commission for Senior Citizens, Area Agency on Aging
10 Sunday, June 28, 2015 / Alzheimers Awareness Guide / Lee Central Coast Newspapers
Elder Abuse is a crime. Neglect is a crime. Physical abuse is a crime. Verbal suffering is a crime. Abandonment is a crime. Isolation is a crime. Financial abuse is a crime.
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Each year, over 2 million older Americans are abused, neglected and exploited. Elder abuse is any form of mistreatment that results in harm or loss to an elder. Elder abuse takes many forms, including: neglect; physical abuse; sexual abuse; financial abuse and exploitation; emotional or psychological abuse; isolation and abandonment. During recent decades the California Legislature has responded to elder abuse, declaring that crimes against the elderly and dependent adults are deserving of special consideration and protections. The Welfare & Institutions and Penal Codes declared that elder abuse is a crime and provided a framework for the community to understand elder abuse. Unfortunately, most cases of abuse go unreported. It is estimated that only 1 in 14 abuse situations are reported. As California passes laws to protect our elders, the impact of abuse becomes clearer. Our need to respond, engage in prevention and educate increases as the costs of elder abuse rise. These costs include human suffering, loss of property and income, shame and more. Thankfully, there are many helpful resources that promote awareness through a better understanding of cultural, social and economic factors that affect elder abuse. Annually, a training conference is held in Santa Barbara in May (Elder Abuse Prevention Month) that empowers our community to protect seniors and prevent
elder abuse and neglect. Community education and information is also available from the Elder Abuse Prevention Council of Santa Barbara County and the Area Agency on Aging, which publishes literature regarding Reverse Mortgages, Annuities, Hiring In-Home Help and prevention resources. Lastly, stay connected to the Alzheimer’s Association. In the May 2015 issue of the Alzheimer’s Association California Central Chapter’s Caregiver Tips & Tools highlighted “Preventing Financial Elder Abuse.� Often, we consider elder abuse to be a ‘family issue’ and don’t get involved. That isn’t enough. It is important to get involved. Share information and resources. Help connect the family. Our task is not done until we STAND UP AGAINST ELDER ABUSE. It is our responsibility, if we suspect abuse, to report it. Call Adult Protective Services in Santa Barbara at (805) 681-4550, in Santa Maria at (805) 346-8303 and in Lompoc at (805) 737-6020. If you or the abused live in a long term care facility, call the Long Term Care Ombudsman (805) 922-1236 or the Sheriff Dispatch at (805) 683-2724. If an elder is in immediate danger, call 911. Let the experts do their job. It is their role to investigate and determine if elder abuse has been committed, protect the elder from further abuse, and take appropriate action(s). For more information about the law and resources, contact the Area Agency on Aging at 965-3288 or 925-9554.
Make Safety Your Priority
Who We Are, What We Do
By Sonya Laputz / Educator and Care Specialist, Alzheimer’s Association California Central Chapter
What is Alzheimer’s Disease?
Alzheimer’s is a disease that attacks the brain and causes problems with memory, cognition and behavior. It is the most common form of dementia, affecting 5.3 million people in the United States.
The Alzheimer’s Association
For over 25 years, the Alzheimer’s Association has provided reliable information, supportive programs, free services for families, increased resources for dementia research, and influenced changes in public policy.
Our Mission
To eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all those affected; and to reduce the risk of dementia through promotion of brain health.
Respite Grants: Family caregivers of those with dementia who cannot afford to pay for respite care can receive financial assistance for respite through this program, so they can get a much needed break from the demands of caregiving. Lotsa Helping Hands: Lotsa Helping Hands is a private, web-based caregiving coordination service that allows family, friends, neighbors and colleagues to create a community and assist with the daily tasks that become a challenge when caring for an aging loved one with memory loss or during long-term caregiving. Each community includes an intuitive group calendar for scheduling tasks such as coverage or transportation to medical appointments, the capacity to send out reminders for appointments, a platform for securely sharing vital medical, financial, and legal information with designated family mem-
What you can do »
Services
Learn about Alzheimer’s disease — its warning signs, who’s at risk and how to join the cause.
What you need to know about Alzheimer's
Connect with the Alzheimer's Association by participating in a support group, getting information about care options or attending one of our education workshops. Advocate for those affected by Alzheimer’s, and urge legislators to increase funding for research, care and support. Join more more than than 450 700 participants participants in in North San Luis Obispo Join 700 Kern County Santa eachCounty Barbara year ® each year Walk End to Alzheimer's —vs. our signature ® End and Alzheimer’s Blondes ®Brunettes - our for County Walk each tofor End year Alzheimer’s forToWalk signature our signature events events to raise to raise funds funds and and awareness. awareness. event to raise funds and awareness. Donate fund vital research vitalresearch research andand Santa andSLO Kern Maria care care programs. programs. Donate to to help help fund care programs.
The disease Alzheimer’s is not a part of normal aging; it’s a progressive, fatal disease. There is no cure. And today it is the sixth-leading cause of death in the United States.
The prevalence There are currently more than 5 million Americans living with Alzheimer’s — including as many as 200,000 individuals under age 65. Kern County, Barbara there County, are there more are 65. In In Santa San Luis Obispo County, than more 10,000 than 9,000 people people living living with with the disease. the disease. there are more than 7,000 people living with the disease.
The future With no effective prevention or treatment methods, Alzheimer’s disease has the power to bankrupt families, communities and our health care system.
DonnaDonna Beal Beal Vice Program VicePresident, President, Program dbeal@alz.org dbeal@alz.org
Mitchel Sloan Mitchel Sloan VicePresident, President, Development Vice Development msloan@alz.org msloan@alz.org
Sonya Michael Laputz Lane Sonya SonyaLaputz Laputz Amanda Valenzuela Sonya Laputz Rayleen Moran Educator and Care Educator Educator Specialist and andCare Care Development Specialist Specialist Manager Educator and Care Specialist Office Manager slaputz@alz.org mlane@alz.org slaputz@alz.org slaputz@alz.org avalenzuela@alz.org slaputz@alz.org rmoran@alz.org The Alzheimer’s Association is the world’s leading voluntary health organization in Alzheimer’s care, support and research. Our mission is to eliminateAlzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.
Our vision is a world without Alzheimer’s
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800.272.3900 | alz.org/CaCentral
Alzheimer’s Association California Central Chapter Santa Maria Regional OfficeOffice Santa MariaCounty Regional Office Kern County San Luis Obispo Regional 120East Jones Street, Suite 201 New Stine Road 120 Jones Street, Suite113 113 3232 S.East Higuera Street 101 A Santa Maria, CA 93454 Bakersfield, CA San LuisMaria, Obispo, CA 93401 Santa CA93309 93454 805.636.6432 661.794.6948 805.547.3830 805.636.6432
Lee Central Coast Newspapers / Alzheimers Awareness Guide / Sunday, June 28, 2015
Educational Presentations: Our Confident Caregiver series provides information on caregiving skills, treatment and research. The Savvy Caregiver program is a 12-hour, intensive caregiver workshop to prepare primary caregivers for the challenges of caring for a loved one with dementia. Our Caregiver Center at alz.org/care/ can also provide online education and support to families. Care Consultations and Information & Referral through Helpline: In-person consultations with trained professionals provide coaching, education and information to support families throughout their caregiving journey. Consultations are provided in the Alzheimer’s Association office. Information referrals and telephone support is available 24-hours a day, seven days a week: 800.272.3900. Support Groups: Family members have the opportunity to share information, develop caregiving skills, and provide mutual support in a small group setting. Find out more at alz.org/cacentral MedicAlert + Safe Return: We provide information and assistance with registration in the Alzheimer’s Association’s nationwide wandering response program. MedicAlert provides an ID bracelet that is linked to a personalized database so that in the event of a wandering incident the lost person can be united with their listed emergency contact quickly. To learn more, visit the website at: www.medicalert.org/safereturn Training for Professionals: Our specialized trainings for care industry professionals offer instruction in state of the art dementia care for all levels of care: in home, assisted living, and nursing homes.
bers, and customizable sections for posting photos, well wishes, blogs, journals and messages. To learn more, visit the website at: www.alzheimers.lotsahelpinghands.com Walk to End Alzheimer’s: Our signature fundraising and awareness event brings together hundreds of North County residents each fall for music, and informative exhibitors. The goal of the Walk to End Alzheimer’s is to raise funds for research and services, decrease the stigma and raise the awareness associated with Alzheimer’s disease, and to unite those affected in a meaningful gathering. Contact Us Visit our website at: alz.org/CaCentral or call us at 805.636.6432 or toll free at 800.272.3900 for more information on any of these programs.
Personal Care Services
Call today for your FREE In-Home Assessment!
12 Sunday, June 28, 2015 / Alzheimers Awareness Guide / Lee Central Coast Newspapers
805.690.6202
Services are available 24/7 and individualized to each person. All caregivers are carefully screened, and a Care Manager oversees each case.
• Bathing & Oral Hygiene • Light Housekeeping & Laundry • Companion Care
• Respite Care • Post-Surgical Care • Transitional Care
• Medication Reminders • Transportation & Errands
For more information, visit us online at www.vnhcsb.org/personalcare Insured & Bonded • No Hourly Minimum • No Contract Required • Se Habla Español