winter 2012 features - afacareadvantage.org · page 23 wellness scale empowerment and resources...

WINTER 2012 FEATURES

THE VIEW ..........................2

OBSERVATIONS ................2

IN TOUCH ..........................3

CONNECT ..........................4

RESEARCH CLIPS ............5

DAILY LIVING ..................9

ADVANTAGE POINTS ....11

HEART AND SOUL ..........31

BEST FOR LAST ..............32

COVER ARTWORK: � Rita Loyd

IN EVERY ISSUE

PAGE 15GIVING CAREA daughter taps her self-love to give love.

PAGE 17GO FOR IT!Practicing self-care regularly helps you—and your loved one.

PAGE 23WELLNESS SCALEEmpowerment and resources bulk up caregiver wellness.

MISSION: “TO PROVIDE OPTIMAL CARE AND SERVICES TO INDIVIDUALS CONFRONTING DEMENTIA,

AND TO THEIR CAREGIVERS AND FAMILIES—THROUGH MEMBER ORGANIZATIONS DEDICATED TO IMPROVING QUALITY OF LIFE”

CHAIRMAN OF THE BOARD Bert E. Brodsky

BOARD OF TRUSTEES

Howard M. ApplebaumBarry Berg, CPALuisa EchevarriaSeth E. Ellis, Esq.

Jeffrey Greener, Esq. Chief J.E. (Gene) Saunders Terence E. Smolev, Esq.Josselyn B. Winslow

PRESIDENT AND CHIEF EXECUTIVE OFFICER Eric J. Hall

MEDICAL ADVISORY BOARD

Chairman: Jacobo E. Mintzer, M.D. J. Wesson Ashford, M.D., Ph.D.

Donna Cohen, Ph.D. Jeffrey Cummings, M.D.D.P. Devanand, M.D.

P. Murali Doraiswamy, M.D. Carl Eisdorfer, Ph.D., M.D. Sanford I. Finkel, M.D.

Lee Hyer, Ph.D.Dharma Singh Khalsa, M.D.

George Perry, Ph.D.Richard E. Powers, M.D.

Gary Small, M.D.Pierre N. Tariot, M.D.

careADvantage®PUBLISHER Alzheimer’s Foundation of America

EDITOR-IN-CHIEF Carol Steinberg

CREATIVE DIRECTOR Richard Yaniro

CONTACT INFORMATIONAlzheimer’s Foundation of America

322 Eighth Ave., 7th floor New York, NY 10001

866.AFA.8484 866.232.8484 646.638.1546 fax

[email protected] and www.alzfdn.orgwww.afacareadvantage.org

careADvantage® is published quarterly by AFA.

Information contained in careADvantage® should not be considered a replacement for consultation with a qualified healthcare professional. Books, publications, Web sites and other citations noted in careADvantage® should not be considered

an endorsement.

The inclusion of advertisements in careADvantage® is not an endorsement of the advertiser or its

products or services. The Alzheimer’s Foundation of America does not investigate advertisers’ claims

and is not responsible for these claims.

All rights reserved. This publication may not be reproduced in whole or in part without permissionfrom the Alzheimer’s Foundation of America.

WINTER 2012 VOL. 7 NO. 2

© 2012 Alzheimer’s Foundation of America

WINTER 2012 • care ADvantage • 1

PAGE 12GUEST COLUMNMemory guru Gary Small, M.D., delivers brain health tips.

PAGE 27‘KITCHEN TABLE TALK’It’s best to hold an end-of-life discussion early on.

SPECIAL SECTION: SPOTLIGHT ON SELF-CARE

Mom needed to take a break from caring for my dad,who had Alzheimer’s disease. She had to have some timefor herself. She could do what she loved best—be withher children and grandchildren. And that’s why one fall many years ago, she flew up by

herself, albeit very reluctantly, from Florida for a briefrespite, and found herself in the crisp New York airstanding in a pumpkin patch with her fivegranddaughters. I doubt she ever regretted it.How I wish that every caregiver would act on this

advice—the advice that jumps off the pages of this issue. The recommendations begin with tips for brain health

(see page 12) from Gary Small, M.D., a renowned expertwho shares insight from his latest book. One of the beststress-reducing strategies for caregivers is “to ask forhelp,” according to Small.

We all had ganged up on my mother.“You need to take care of yourself,” I said, my sister repeated, and mybrother reinforced.

Take care,

CAROL STEINBERGEDITOR-IN-CHIEF

This guidance leads right into our special spotlight onself-care (see page 15). Here, experts—both professionalsand family caregivers—outline the ingredients forcaregiver wellness. With strategies aplenty, theirsuggestions range from the spiritual to the social, thepsychological to the physical, and other segments inbetween. Also in this issue, we delve into a “kitchen table

discussion” on end-of-life care (see page 27). As hard as itmight be to have this talk, knowledge of your loved one’swishes can boost caregiver well-being. All told, successful caregiving can perhaps be summed

up best in a simple sentence by one of our authors: “Allwho give care need to take care.” It pays to pay heed.

[OBSERVATIONS]

2 • care ADvantage • WINTER 2012

[THE VIEW]

ERIC J. HALLPRESIDENT AND CHIEF EXECUTIVE OFFICERALZHEIMER’S FOUNDATION OF AMERICA

2012 has begun. And, for me,like most of you, each NewYear marks a time of lookingback and looking ahead. In my role at the Alzheimer’s Foundation of America

(AFA), I carefully assess what has been accomplished in theprior year and what more needs to be done. I take apanoramic view, of the Alzheimer’s disease landscape, theeconomic and political climates, the services and supportneeds of the people we serve, and the ability—of ourorganization and others—to meet them.From that vantage point, I can tell you that we find

ourselves at an unprecedented moment in time. As directed by Congress and President Obama, our nation

for the first time is crafting a national plan for the prevention,treatment, cure and care of Alzheimer’s disease that will beunveiled in 2012. With a seat on the council that is advisingfederal leaders about the plan’s contents, I feel the weight ofresponsibility and of opportunity. I am excited at theprospect of a blueprint that holds the promise of changingpeople’s lives—for the better.

It also appears that Alzheimer’s disease will be an issue inthe 2012 Presidential race. Several candidates have alreadypublicly pledged to attack this healthcare crisis and haveoutlined their strategies. No doubt, with more voters affectedby Alzheimer’s disease in their families, we’ll be hearing moreon this as Republicans and Democrats face off.The rising incidence of the disease has also been shaping our

efforts at AFA itself. You know you’re on to something whenpeople keep coming back for more or refer us as the place togo for help and support. More folks calling AFA’s help line.More users visiting our Web sites. More Americans rallyingbehind our calls to Congress. More professionals lining up forour training. More readers subscribing to this magazine. In 2012, AFA will continue to press forward with programs,

services and activities to support individuals, families andprofessionals. At AFA, too, I feel the weight of responsibilityand of opportunity. The ball dropped on 2012, and I am running with it.

Regards,

[ IN TOUCH]


I just read my first issue of care ADvantage(summer/fall 2011) and am so impressed with thecontent. Of course, I signed up for my ownsubscription. The article by Clara Luu, “Year of theDragon,” was especially moving. Her insights andwriting style made for a heart wrenching essay, and herperspective belies her young years. She has an old soul,and I mean that only in the most flattering way! Clara'sessay points out how it is not just the semi-retiredcaregiver living this experience, but multiplegenerations. Thank you for publishing this gem, and forcontinuing to support all of us caregivers.NOREENE SWEENEY LANCASTER, PA

Editor’s note: As our reader rightly notes, caregiverscan come from multiple generations—including teens,like Clara Luu. That’s why the Alzheimer’s Foundationof America has a division specifically for teens; AFATeens educates and engages teens. Check it out atwww.afateens.org.

WRITE TO US...

We would like to hear from you. Send your letters, questions, practical caregiving tips and creative contributions—poems, lyrics, short essays, artwork and photos that express feelings related to experiences with Alzheimer’s disease and relatedillnesses—to:

Please include your full name and contact information (address and e-mail or phone number).Contributions published in care ADvantage may beedited for length and clarity.

[email protected] ADvantagec/o Alzheimer’s Foundation of America322 Eighth Ave., 7th floorNew York, NY 10001

“Laughter is the sun that drives winter from the human face.”

— Victor Hugo

READERS’ NOTES

I loved your Pay it Forward [ADvantage Points] article inthe summer/fall 2011 issue of care ADvantage magazine:I'm going to check out NOGNZ for my family!HONORA PRECOURTWASHINGTON, D.C.

Thank you for a fantastic publication. It certainly helpedus for many years as we struggled through the variousstages of caring for my father-in-law.DEBBIE PIZZUCOCINCINNATI, OH

I am a senior administrator of a local home healthcarecompany. Helping in any way possible with Alzheimer’sdisease is my passion. I am subscribing to your magazinebecause I’m always interested in any additionalknowledge I can obtain to help the cause. KARMAN MCCRAY STAUNTON, VA

My cousin, who was a caregiver, gave me an issue ofyour magazine from 2007, and I was very impressed bythe information. My mother is 88 and things are startingto get complicated. The information is very helpful. CLARIBEL LOPEZ SAN LORENZO, PUERTO RICO

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[CONNECT]

A Q&A WITH AMY WALDOWSKI, LMSW, QDCP,A SOCIAL WORKER AND PROJECT COORDINATOR AT THE ALZHEIMER’S FOUNDATION OF AMERICA

Question: My mom has severe dementia. When shecalls one of us by the wrong name, should we correcther or just let it go?

Answer: I’m sure that it stings when your mom callsyou by the wrong name; after all, she is the one whonamed you, raised you and should know you best. Butcases of mistaken identity are another unfortunateand very real example of what happens to someonewho has Alzheimer’s disease—and why you should nottake it personally. The brain damage caused by Alzheimer’s disease

likely makes your mother confused and disoriented toperson, place and/or time. Additionally, her brain mayno longer be able to correctly translate the signalsfrom her eyes, ears and other sensory organs. Forexample, your mother may see you—her daughter, butmight interpret the image of you as her sister who haslong since passed. Even if you would correct your mother, it is unlikely

that you could convince her of the truth no matterhow hard you would try. As a result, if your mom callsyou Sue instead of Beth, your brother Larry instead ofMark, and so on, it’s best to just let it go. Instead, keep communication positive and take

steps to better manage her behavior. It can help toassess the situation for possible triggers that seem toincrease your mother’s confusion and then to makeany necessary adjustments. For example, make surethat she is not being overstimulated with too muchnoise or light, and limit visitors to one or two peopleat a time. Hopefully, this results in a calmer and lessconfusing environment for her.

Question: Can I get paid to care for my mother inher home?

Answer: The answer—for you and others—dependson a lot of questions: Where does your mom live?

What is herdiagnosis?What is herfinancialstate ofaffairs? The good

news is thatthere are anincreasing numberof governmentprograms that offerrecipients (in this case, yourmother) the option to “self-direct” the funds theyreceive for their own care, thus allowing familymembers to get paid for caregiving in certaininstances. They fall under the umbrella of“self-directed” or “participant-directed”care—long-term care services aimed at helpingpeople remain at home longer. The not so good news is that each program sets its

own guidelines. As a result, not all programs apply topeople with Alzheimer’s disease or there may bespecific income requirements or other restrictions.Under these programs, participants or their

representatives can decide “what” services the moneywill pay for (known as budget authority) and “who”will provide the personal care services and supports(known as employer authority). Evidence of thegrowing popularity of these programs, a new nationalsurvey by the National Resource Center forParticipant-Directed Services (NRCPDS) in Bostonshows that all states have at least one publicly-fundedprogram offering employer authority and 41 stateshave at least one program with budgetary authority. In cases where recipients have the flexibility to use

homecare services of their own choosing, someprograms allow recipients to pay family members whoprovide the respite and personal care support—including adult children and even spouses in somestates. Program participants are considered to be“employers” or “co-employers,” and family membersare the “employees.” As such, an employer can hire


Connecting Your Questionsand Our Answers

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[RESEARCH CLIPS]

for anxiety or depression, according to a study thatpooled data from the Department of Veterans Affairs of nearly 300,000 adults—mostly men aged 60 or older.The majority of the 241 people who committed suicideduring the study period were newly diagnosed. Nursinghome admission was associated with lower risk.Researchers concluded that given the higher rate of suicide in those receiving treatment for psychiatricsymptoms and the high proportion of people who died using firearms, closer monitoring and assessmentof gun access may be a critical part of initial treatmentplanning.

Archives of General Psychiatry • November 2011Ties found between depression and Alzheimer’s disease.Researchers found evidence of the plaques and tanglesthat are hallmarks of Alzheimer’s disease in older adultswith a type of severe depression called majordepressive disorder (MDD). Using imaging techniquesto compare the brains of 20 older adults diagnosed withMDD to 19 healthy controls with similar age, educationand gender, they detected that participants with MDDhad much higher levels of a chemical marker that bindsto the deposits throughout the brain and in criticalregions responsible for decision-making, complexreasoning, memory and emotions.

Neurology • December 21, 2011 (Online Edition) Brain thinness may predict Alzheimer’s disease. UsingMRI brain scans to determine the thickness of the outeredges of the brain, or cortex, researchers found thatthinning of the cortex significantly boosted risk ofcognitive decline. The 15 percent of participants,averaging 76-years-old, who had the thinnest cortex hadthe lowest scores on cognitive tests, with one in fiveexperiencing cognitive decline.

Proceedings of the Natural Academies of Sciences• December 5, 2011 (Early Edition) Researchers design antibodies to attack diseaseproteins. Researchers recently developed a process tocreate antibodies that neutralize the effect of the toxicproteins found in the brains of individuals withAlzheimer’s disease. Antibodies are large proteinsproduced by the immune system that help combatinfection and disease. The new antibodies only bondedto the harmful proteins and not to the moleculesunrelated to Alzheimer’s disease.

Alzheimer’s & Dementia • November 2011 Dementia plus psychiatric history may up suicide risk.Increased risk of suicide among individuals withdementia was associated with white race, a history ofpsychiatric hospitalizations, and taking prescriptions

Tracking the Latest Studies from Professional Journals


[CONNECT]

and manage the caregivers; as a co-employer, a homecare agency is responsible for hiring the employeewhile the participant supervises, schedules andmanages the employee.But it’s important to read the fine print since

participant-directed programs have variousrestrictions. Some serve specific population segments,such as the elderly or physically-disabled youngeradults. Of 212 programs surveyed, 102 offer employerauthority and 56 provide both employer and budgetauthority to adults 65 and older.Again, the not so good news: Nearly 30 percent of

the programs serving elders do not allow participantsto hire their spouses as caregivers. Funding comes primarily from the Medicaid waiver

program, as well as through Medicaid state plans andgeneral funding from a state. In addition, in 33 states,there are separate participant-directed programs forveterans.

Programs go under various names: cash andcounseling, consumer-directed, participant-directedand self-directed care. For more information on programs available in

specific states, visit www.participantdirection.org.

HAVE A CAREGIVING QUESTION?

Send your questions to:care ADvantagec/o Alzheimer’s Foundation of America322 Eighth Ave., 7th floorNew York, NY 10001or e-mail: [email protected]

For immediate assistance, call 866.AFA.8484. Also, SKYPE and chat live with AFA social workers at www.carecrossroads.org.

Loss of Smelland Taste THE SITUATION

Why can’t you smell? Normal aging is the most commoncause of loss of smell or taste, with the disorder occurring in50 percent of people aged 65 to 80, and 75 percent of thepopulation over 80. Two-thirds of the remaining problemswith chronic smell loss are due to other causes, includingvarious neurological disorders such as Alzheimer’s disease,frontotemporal dementia and Parkinson’s disease.Studies show problems with smell function in 90 percent of

people with Alzheimer’s disease. It occurs becausespecialized nerve cells in the nasal smell organ—the olfactorysystem—are damaged. Still, the vast majority of older adults and people with

Alzheimer’s disease do not notice that they have a problem.Key indicators of smell and taste disorders are reducedappetite, less interest in food, weight loss andmalnourishment.

THE SOLUTION

Visit an ear, nose and throat (ENT) physicianand/or neurologist. For example, the neurologist willask about headaches, double vision, facial numbness,balance problems or trouble with memory. The answersto these questions will help determine any problem withthe olfactory nerve or the structures inside the brain. Thedoctor will test nerves related to smell, taste and sensoryfunction of the mouth and tongue, will probably do bloodtests, and may also require an MRI of the brain andolfactory region to gain detailed images of manystructures involved in smell.

Probe further, if necessary. It may be necessary to goto one of the few smell and taste speciality disordersclinics and research centers in the United States for moredetailed testing, more treatment options and patienteducation if the cause and long-term outcome of thedisorder is unclear or troubling, or if symptoms such asincreasing weight loss, decreased appetite and depressionare present.

PREPARE IN ADVANCE

Be aware that smell and taste disorders can put your health and safety at risk. Be sure to have working smoke detectors and a natural gas orpropane monitor in your home. Date all perishablefoods and refrigerate them to prevent accidentalfood poisoning. Label and properly store all gardenproducts and household cleaning products.

Cook with care. Be extra attentive while cooking toprevent burned food or a possible fire.

Spice up food preparation. In order to improve thetaste of food, choose foods with varying colors andtextures. Add spicy condiments like peppers,horseradish, mustard or salsa. Increase the flavor of fish,poultry and meat by marinating it in sweet fruit juices,sweet wine, sweet and sour sauce, or spicy saladdressing. Eat tart foods such as oranges and grapefruits,and tart beverages such as lemonade and grapefruit juicewith their pulp.

Serve foods hot and steaming. This will allow thearoma to fill the dining area.

Watch how you eat. Chew food slowly and move foodaround in the mouth in order to stimulate all taste andsensory receptors. Alternate bites of different foodsduring the meal.

Get educated about the disorder. If doable, joinsupport groups and exchange recipes with others whohave a similar condition. Among the many suggestionsfrom people with the disorder are char-grilledhamburgers (almost burned), grilled salmon withchopped onions, grilled pork (almost burned) andbarbecued chicken with BBQ sauce for extra dipping.


[DAILY LIVING]

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Adapted with permission from the American Academy of Neurology from “Navigating Smell and Taste Disorders” by Ronald DeVere, M.D., and Marjorie Calvert (Demos Medical Publishing, 2011).

been the predominant family driver in those driversaged 70 or older, the authors suggested.For the study, Rowe along with Judith Alznauer

Seale, MS, a research assistant, and CatherineAlznauer Greenblum, Ph.D, FNP-BC, postdoctoralscholar, the Hughes Endowed Chair in Science,reviewed law enforcement reports of Silver Alerts—analert issued when seniors diagnosed with dementia gomissing in a vehicle—that involved 154 persons withdementia missing while driving in Florida. About 60 percent of persons with Alzheimer’s disease

and other dementias will have a missing incident atsome point during the course of the disease, due tocommon symptoms like memory loss, diminishedproblem-solving abilities and confusion. Theunpredictable nature of these missing incidents makesprevention challenging.While missing incidents can happen despite the most

attentive caregiving, some common signs that drivinghas become unsafe include:• having minor accidents or near misses;• getting lost on familiar roads;• having other drivers honk at you often;• being confused or disoriented when driving;• making slow or poor driving decisions;• failing to observe traffic signs or signals;• getting traffic tickets; and• having “gotten lost” before.Experts say caregivers should be aware of the

potential for a missing incident and should considerhaving the person assessed by a driving specialist,usually an occupational therapist. A medical evaluationmay uncover health problems that affect driving, and aphysician may suggest driving restrictions or drivingretirement due to safety issues. Among other steps, caregivers should ensure that a

person with dementia wears an identification bracelet,and they should consider a locating technology thatcan help caregivers and law enforcement find a personwho has gone missing.

Current thinking about what really happens when an individual with dementia goes missing while driving is off track, based on a new study by expertson this issue.New research, exclusively released to caregivers

here, sheds some light on events leading to missingincidents—information that may help caregiversprevent these unpredictable, frightening andpotentially life-threatening events.Researchers at the College of Nursing at the

University of South Florida, Tampa, conclude that amissing incident can happen at any stage of dementiaand that most lost drivers have not “wandered away.”Rather, more than 60 percent of drivers with

dementia went missing while on a routine,familiar—and caregiver-permitted—trip that they hadsuccessfully handled in the past, including driving tomedical appointments, restaurants, shopping andfriends and family. “The majority of times the caregiver allowed the

person with dementia to take the car and drive,” notedthe lead researcher, Meredeth Rowe, Ph.D. RN,professor and Lewis and Leona Hughes EndowedChair in Nursing Science. “This is in stark contrast tothe stereotype of lost drivers being able to find hiddenkeys or leave while the caregiver is unaware.” Once the mistake is made, some drivers cannot

recover and find themselves miles from their intendeddestination—in fact, sometimes even over 1,000 miles away. Other activities that resulted in a missing incident

included driving a route that was out of the ordinaryor driving away from home while agitated.Also of significance, almost 75 percent of drivers

who went missing were male, while in the generalpopulation about one-third of people with Alzheimer’sdisease are male. Males being cared for by spouses versus other family

members were more likely to have an incident. Thisfinding may be related to the fact that males have


[ADVANTAGE POINTS]products. people. of interest .

Help! I’m Driving and I Can’t Find My Way Home!Study Sheds New Light on What’s Happening

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hen it comes to influencing brain health, thewords “too late” hardly ever cross the lips ofGary Small, M.D. In fact, he believes thateveryone should wake up and get moving, both

literally and figuratively, to make lifestyle changes atany—and every—point in their lives. “Although the earlier we get started on a healthy brain

lifestyle the better, in most situations it is rarely too late toget started,” said Small, director of the UCLA LongevityCenter at the university’s Semel Institute for Neuroscience &Human Behavior, Los Angeles, and a member of theAlzheimer’s Foundation of America’s Medical and ScientificAdvisory Board.In this interview, Small sheds light on what we all should

be doing now plus other insight from his just-released book,co-authored with his wife, Gigi Vorgan, “The Alzheimer’sPrevention Program: Keep Your Brain Healthy for the Restof Your Life” (Workman Publishing, 2012). The couplepreviously co-authored “The Memory Bible,” a New YorkTimes bestseller.

Why do you believe that the aging of the baby boomgeneration marks a turning point in how our nationviews Alzheimer’s disease?Age is the single greatest risk factor for developingAlzheimer’s disease, and baby boomers—the nearly 80million people born between 1945 and 1964—are nowbeginning to turn 65 when risk begins to increase.Many baby boomers have observed people in their parents’

generation develop Alzheimer’s disease, and some haveexperienced first-hand the pain of watching someone theylove gradually fade away from the disease. However, today’s boomers are proactive. They don’t plan

to sit back and take it. They have no hesitation about facinga challenge and testing conventional wisdom. And as they’veaged, many baby boomers have embraced the concept thatan active lifestyle can keep them feeling healthy and young.They know about the research confirming that the samelifestyle choices that protect the body also protect the mind.

Two years ago, a consensus panel of the NationalInstitutes of Health (NIH) concluded that inadequatedata is available to support any modifiable factorssuch as supplement intake, diet, exercise or socialengagement as a way to reduce an individual’s risk for

Alzheimer's disease. Yet, you declare in your book that we have an ability to influence brain health. How do you support your view?I agree with the NIH conclusion that we don’t yet have adefinitive, long-term study to prove prevention works. Theconsensus panel couldn’t draw firm conclusions betweendecreasing risk factors for Alzheimer’s disease and slowingcognitive decline. However, the panel did say that many studies of healthy

lifestyle habits—including diet, physical activity andcognitive engagement—are providing new insights into theprevention of cognitive decline and Alzheimer’s disease. … I don’t think it makes sense to wait years for definitive proofbefore we start protecting our brains.

Can one lifestyle change make a difference in brainhealth, or does someone need to utilize severalstrategies to feed off each other? Multiple studies have found that aerobic physicalconditioning alone can lower the risk for Alzheimer’s disease and improve cognitive abilities. Other studies point to thebenefits of diet and cognitive stimulation. However, our group’s experience with thousands of

patients and volunteers is that when we combine strategieswe create a synergy that has a greater impact than just doingone or two of the strategies on their own.

Why do you believe that “timing, timing, timing” are the three most important words in Alzheimer’sprevention?A particular brain-protective treatment that is effective atone point in time can lose its effectiveness if we wait too longto use it. In fact, some therapies may even be harmful if thetiming is slightly off. The most effective point in time forusing a certain treatment may be years, even decades, beforeany symptoms of mental decline are noticeable. At laterstages, different treatments may be called for.

Is it too late for older people who have lived anunhealthy lifestyle all their lives or for people alreadydiagnosed with Alzheimer’s disease to adopt theAlzheimer’s Prevention Program?Although the earlier we get started on a healthy brainlifestyle the better, in most situations it is rarely too late toget started. In my clinical practice, I routinely review bothmedical issues and lifestyle habits, regardless of the patient’s

WMEMORY GURU: HOW TO KEEP YOUR BRAIN HEALTHYINTERVIEW BY CAROL STEINBERG

[GUEST COLUMN]


degree of cognitive decline. I willadjust recommendations dependingon the individual’s cognitive abilities,but even with people already sufferingfrom Alzheimer’s dementia, eating ahealthy diet, remaining sociallyengaged and getting regular physicalactivity offer benefits.

Your book includes a memoryassessment that readers can take,but is there a danger in peopleself-assessing?Memory self-assessments are not asubstitute for medical evaluations thatcan lead to a diagnosis. When usedresponsibly, these self-assessmentscan help people get a better idea oftheir areas of strength and challenge.Also, when people become more aware of challenges thatmay be interfering with daily life, they are advised to seekout professional help. I think there is a greater danger when people ignore their

symptoms of age-related memory decline to the extent thatthey avoid seeking out a doctor and a diagnosis ofAlzheimer’s disease is unnecessarily delayed.

How does knowledge or knowing your “baseline” interms of memory loss serve as a powerful motivatorto make lifestyle adjustments?For many people, it shocks them out of their denial thatthey don’t have memory challenges. Also, when they realizethat some simple strategies can make a difference, knowingtheir baseline offers a way to set reasonable goals. It is not unlike someone stepping on a scale and realizing

that it is time to go on a diet and making a plan on howmany pounds they will try to lose each week.

You have been a long-time advocate of “look, snap,connect” as a basic memory-strengthening technique.Can you illustrate the technique and explain howsomething so simple can enhance performance? “Look” is a reminder to focus attention on what we want torecall later. “Snap” means form a visual image or mentalsnapshot of the information we want to learn. Our brains arehard-wired to remember visual information best. “Connect”reminds us to create visual associations to link up ourmental snapshots so they are meaningful and easier to recalllater. If I am running out of the house and need to remember to

pick up my shoes and get gas for the car, I will imagine

myself pumping gas into apair of my shoes. Theunusual, active image willbe memorable and help merecall the errands later.

Given the limited timethat caregivers typicallyhave for themselves, whatare the top three thingsthat caregivers canrealistically do to take careof their own brain health?

Caregivers can strive for dailyexercise, a healthy diet and socialengagement, and all three of thesestrategies sometimes can involvethe person with the disease. … Ifthey exercise together, that will

encourage social engagement, which is associated withbetter cognitive health as well.

Likewise, with caregivers under enormous stress—arisk factor for Alzheimer’s disease and physicalillness—what are the three top approaches to, again,realistically manage stress for the good of their brains?Physical exercise not only boosts brain circulation andhealth, but also relieves stress. I also recommend brief butfrequent stress relief breaks throughout the day—perhapsone-minute breathing exercises or meditation breaks.Finally, one of the most important stress-reducing

strategies is to ask for help; don’t try to do it alone.

Everyone’s likening the expected increase in theincidence of Alzheimer’s disease to a “silver tsunami.”If Americans adopted a proactive healthy brainlifestyle, what would be the impact on our society? We studied this question with the help of the RANDCorporation think tank several years ago and estimated thatif everyone in the United States adopted just one healthybrain lifestyle, we might expect one million fewer cases ofAlzheimer’s disease than anticipated within five years. More recently, investigators at the University of California,

San Francisco estimated that the projected effect of riskfactor reduction would be three million fewer Alzheimer’scases in the United States and 17 million fewer casesworldwide.

CAROL STEINBERG is editor-in-chief of care ADvantageand executive vice president of the Alzheimer’s Foundationof America.

[GUEST COLUMN]


“I don’t think it makes sense to wait years for

definitive proof before westart protecting our brains.”

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Gary Small, M.D.

ita Loyd of Huntsville, ALknows all about givingcare—to herself andothers.

A watercolor artist and writer, shehas embraced the theme of“unconditional self-love” throughout herwork. “Giving Care” (pictured here) isjust one example of her extensive andcompelling collection.“The reason I write and paint about

self-love is because unconditionalself-love has the ability to heal andtransform our lives,” suggested Loyd,who began her craft in 1996 as a way to cope with chronic health problems.“My art taught me many wonderful

things, but the most important was thatit taught me how to unconditionally love myself,” she said. “It taught me this by creating a setting and a reasonfor me to look inward, to ask myselfquestions, to be kind and patient withmyself, to seek new answers and to give myself a voice.”“Giving Care” marks one of Loyd’s

most personal pieces, created out of the love she and hermother have for each other. In this painting, Loyd and her84-year-old mom, who has dementia, are sitting on thecouch—her mom’s favorite spot in the den, surrounded byprotective energy fields. On the other end of the couch, theartist’s late grandmother is leaning over to give healingenergy to her daughter during her illness.“I painted the energy fields to symbolize protection from

some of the negative energies that can affect a caregiver.Below my feet are roots from the earth grounding me when

I feel overwhelmed by the situation. Funneling into my head is the universal energy of healing, love and infinitepossibilities,” the artist explained. Loyd’s art has been exhibited at art galleries, gift shops,

art festivals and community events, as well as produced onmagazine covers and greeting cards, and as art prints andposters. She has also created a set of therapeutic linedrawings that are used at 300 non-profit centers worldwideto help treat survivors of rape and domestic violence. Thedrawings can be downloaded at www.NurturingArt.com.

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GivingCareARTWORK BY RITA LOYD

Special Section: Spotlight on Self-Care

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eing a family caregiver has been my role notonce, but four times over a 20-year period. Myhusband suffered through nearly seven years ofchronic pain. Dad battled lung cancer and was

legally blind in the last years of his life. A major strokedisabled my mother-in-law. And Alzheimer’s disease ravagedand finally devoured my mother after eight long years. Thatwas the worst and last of my caregiving experiences. I was depleted, depressed and praying for release when

Mom died. Since, I’ve recovered my energy, health andwell-being, emerging from grief wiser and stronger. My caregiving journey was uniquely mine, but it is like

other caregivers’ experiences in many ways. One aspect ofcaregiving is universal: All who give care need to take care.If you overlook your own needs, your physical and mental

health suffers. You begin to feel alone, overwhelmed andunable to effectively help the people in your care. I know because these things happened to me. I made

some mistakes. But I also learned simple, yet effectiveself-care practices that relieved my stress and preserved mycapacity to care. Relief from the stress of caregiving starts with recognizing

the importance of self-care and practicing it regularly. Self-care is being concerned about yourself, as well as

others. It’s looking out for your own welfare and makingsure that your own needs are met, not only those of others.Self-care is that collection of choices you make andbehaviors you practice that make you feel good, solve yourproblems and, ultimately, relieve your stress. Managing stress by practicing self-care is important

BWRITTEN BY JANE MEIER HAMILTON, MSN, RN

Self-Care IsNot Selfish

Go For It!

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because it promotes your health, helps you cope when thethings that cause stress are beyond your control, and helpsyou maintain the balance you require to care in a loving andeffective way.How can you practice self-care?Name your symptoms and sources of stress. All

successful self-care follows from this first step. It is essentialto be aware of stress-related symptoms; left unchecked, theycan lead to stress-related illnesses. Symptoms take multiple forms, including physical (e.g.,

change in appetite, chronic fatigue, headaches); emotional(e.g., crying, frustration, depression); mental (e.g., boredom,forgetfulness, denial); social (e.g., isolation, quarreling, lackof pleasure from previously-enjoyed activities); occupational(e.g., overwhelmed, unable to make decisions as a caregiver;absenteeism, being distracted as an employee); and spiritual(e.g., loss of faith, hopelessness, anger at God). Likewise, the demands that cause stress can stem from

multiple sources. Only by identifying what causes yourstress can you take corrective steps. These stressors mightcome from within you (e.g., exhaustion, difficultycommunicating, family problems); from your role as acaregiver (e.g., lack of knowledge or skills, difficulties withprofessional caregivers, unaware of where to get help); andfrom the person receiving care (e.g., complex needs,dependency, difficult behavior). Adjust your attitude. You can control the wear and tear

of the distress you experience by adjusting your attitude inthe following ways:• Silently or aloud affirm your strength and ability to cope.Think, “I can do this!”

• Question negative assumptions. Consider possiblepositive outcomes. Ask yourself, “What is the worst thatcould happen? What is the best that could happen? Whatis most likely to happen?”

• Think and talk about stress from a positive, not anegative perspective. Replace, “This is an awful problem”with, “This is a challenge or opportunity.”Decide on a course of action. Ask yourself: Is there

anything I can do to change or eliminate the stressors in mylife? A “yes” or “no” answer leads to different approaches toself-care.Imagine your stressor is a disagreement with others

over the division of caregiving tasks. You are tired, haveother pressing responsibilities and need some help. In this case, your answer to the question would be, “Yes. If I take some action the stressor could be relieved or will completely go away. My friends or family may help me if I ask them.”


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When a stressor issomething you can control orinfluence, the best course ofaction is assertiveness andtaking a positive approach toproblem solving. This tacticmay yield relief and may eveneliminate the stressor. In a second scenario, the

stressor is your loved one’sAlzheimer’s disease, theprogression of the illness andthe suffering that goes with it.Here, your answer to thequestion would be, “No. Nomatter what I do the diagnosiswon’t change or go away. Ineed to find some way to livewith this.” When you have no control

or influence over a stressor,the best course of action is to use healthy self-carepractices. Problem solving orassertiveness won’t have an effect. Self-care helps you retainenergy and feel better when stressors are beyond yourcontrol. One caution: Take care that you don’t reply “no” to the

question regarding your ability to change or eliminate stresswhen, with courage, you could answer “yes.” Check yourperceptions with a reliable person.Use healthy self-care practices daily, as well as

when you lack control. Loss of control is very stressful.When there is nothing to be done, the thing to do is to carefor yourself. And don’t wait until you are already worn downto practice self-care; make it a priority in your daily routine. Choose things that are good for your body, heart, mind

and spirit. Some are self-soothing—whatever helps you calmdown, have fun, relax, enjoy or feel pampered. Othersinvolve self-discipline; although less pleasurable, in the longrun, disciplined self-care practices may lead to a greatersense of well-being. Healthy self-care relates back to addressing the multiple

areas that show signs of stress: physical, emotional, mental,social, occupational and spiritual. For example, in terms ofphysical self-care, routines could include exercise, abalanced diet, regular checkups and getting a massage.Emotional techniques could include resolving conflict,laughing and saying “no” when you want to or need to.

Mental practices couldinclude learning new things,creating plans and thinkingoptimistically. Social methodscould include developing andusing support systems, takingtime off and engaging in ahobby. Occupationalapproaches could includepacing yourself andacknowledging the good youdo. And spiritual tactics couldinclude praying, being intouch with nature andreading inspirational poetry.Use problem-solving

skills when you havecontrol. When some actionon your part can ease oreliminate your stress, takeproblem-solving action byusing the four-step processoutlined below.Step 1—Figure out what

your problem is. Name the challenge, opportunity, difficulty or situation

that needs improvement. If emotions or confusion makesthis difficult, ask people you respect and trust for help.Organize your facts:• Who contributed to this problem? Who was affected? • What happened to create this problem (e.g., unmetexpectations or promises, bad behavior, something else)?

• When did this happen? • Where did this happen? • How do you and others feel in response to this problem? • Why is this important? Step 2—Develop a problem-solving plan. • Consider options. Ask: What can be done to resolve thisproblem? Brainstorm to develop possible solutions; themore options you create, the more likely you willidentify an effective solution.

• State desired outcomes. Ask: What do I want toachieve? What are short- and long-term goals? Whatrewards will I get if this problem is solved?

• Write an action plan. Create a three-column chart withthese headings and fill in the details—

1. What: Name each step and the tasks for accomplishingit. Think about what difficulties might arise and howyou could handle them.

Self-Care Activity

Consider these questions in self-reflection or discussions:

1. What are the major symptoms that show I amexperiencing caregiver stress?

2. What causes my caregiver stress? 3. If I adjust my attitude, would that help relieve

some of my stress? If so, what are the negativethoughts I should let go of and what positivethoughts should replace them?

4. What stress-numbing behaviors do I turn to forrelief? Am I overly reliant on these? Whathealthier practices could replace some of mycurrent stress-numbing behaviors?

5. What healthy self-care practices have alreadyhelped me handle stressors that are beyondmy control? Are there any new behaviors orpractices that I could add—things that aresoothing, fun, energizing, relaxing or feel likea treat?

6. What one or two things will I do to care formyself today?

—JANE MEIER HAMILTON


2. Who: Name the person(s) who will be responsible fordoing each step of the plan.

3. When: Identify deadlines for completing each task. Step 3—Carry out the plan. Take action and check for progress. Tracking progress is

critical since it motivates people to follow through on theplan. Remind those involved of deadlines for each step andfor the whole plan, the desired outcomes and the rewardsfor success.Step 4—Evaluate the plan. Ask: Did we solve the problem? Did we achieve our goal?

Did we change the situation? Are we listening to allfeedback, both positive and critical? Does anything moreneed to be done? What have we learned from this situation?What worked? Whatdidn’t work?Avoid

stress-numbingbehaviors.Stress-numbingbehaviors includecomplaining andblaming, drugs anddrinking, overeating,and buying sprees. These behaviors numb the distress of being a caregiver,

but do nothing to help the body, mind or spirit cope in ahealthy way with caregiving challenges. By promoting asense of release or relaxation, they give the illusion ofself-care, but if overused, or used in place of problem-solvingaction, these behaviors can actually create more stress.What stress-numbing behaviors do you use? How much do

you rely on them to dull the pain or discomfort in your life?Make sure that these are not big parts of your approach toself-care. If you are too reliant on any of these practices,look for alternatives that are healthier and more effective.

JANE MEIER HAMILTON, MSN, RN, of Gwynedd Valley, PAhas had a 35-year career as a nurse. A long-time presenterand trainer of healthcare professionals, Hamilton foundedPartners on the Path in 2008 to help professional and familycaregivers preserve their health, well-being and capacity tocare by providing research-based, user-friendly self-careresources in online, print and person-to-person formats. Sheis the author of “The Caregiver's Guide to Self-Care: Help forYour Caregiving Journey” (Infinity Publishing, 2011). Thisarticle is an excerpt from Hamilton’s book and is reprintedwith permission.

“If you don't put yourself at the top of thecaregiving pyramid, you won't be able to providegood care for your loved one.”

“Working through the depression and taking oneday at a time is all you can do, but DO NOT feelany guilt for your honest feelings.”

“It's sad to me that so many family caregiversseem to have no family or friend support. At leastwhen I had my dad living with me, I could callupon my sister (who lives out of state) or a familyfriend (here where I live) to stay with Dad for anhour or even half a day so I could get somerespite. In fact, the local folks were delighted thatI asked them for this favor, and I am just waitingfor the opportunity to ‘pay it forward’ by doing thisfor someone else.”

“One thing I do that helps is to play the detectivegame. When something goofy or aggravatingoccurs I try to back up the timeline and todiscover WHY it happened. [Doing that] usuallyhelps me to do better.”

“My hardest part is to try to keep a cheerfulatmosphere in our home and not let [my husband]know how upset I often am. Someone suggestedcrying while in the shower; another said to justhold a pillow over your face and scream. Maybethe best is to just talk about your feelings andemotions with others.”

These comments reflect recent posts fromcaregivers on the Alzheimer’s-specific discussionthread “Balancing Caregiver Responsibilities” onInspire, an online site for various health conditionsthat boasts hundreds of members in itsAlzheimer’s support community.

DETAILS www.inspire.com

Caregiver Chat

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aregiver wellness is more than making sureyou are physically and emotionally healthy. Infact, research from the “Caregiver WellnessSurvey,” a national survey of family and

professional caregivers, suggests that there are at leastnine important and unique characteristics shared bycaregivers who provide the best possible care forthemselves while also caring for loved ones.With these components in mind, the “Caregiver Wellness:

U Model” is a conceptual model aimed at empowering you,the caregiver, to take a strength-based approach toimproving your wellness and increasing your capacity tocare for your loved one. The nine components of the “Caregiver Wellness: U

Model” include social, psychological, physical, intellectual,spiritual, occupational and financial wellness, while alsoincorporating the empowerment and resilience, orflexibility, necessary for you to take charge of your healthon a holistic basis. Rather than look at—and achieve—each wellness factor

in order, the components are designed to complement eachother and represent a collective whole. In other words, atthe core of this model is the belief that the whole is greaterthan the sum of its parts. In addition, caregiver wellness stresses the importance of

viewing wellness as an ongoing process—a work inprogress. As a caregiver, especially for someone withAlzheimer’s disease or a related dementia, your role islikely to continue to evolve as your loved one’s needs

change. Therefore, you must repeatedly re-evaluate yourstate of wellness, acknowledge your strengths and keep onworking toward the best possible wellness. Think of the “Caregiver Wellness: U Model” as a puzzle

with each of the wellness qualities as pieces of that puzzle.Caregiver wellness can be divided into three majorsections: low-level wellness, medium-level wellness andhigh-level or optimum wellness. Your ability to finish eachsection and complete the entire puzzle-—optimumwellness—is dependent on the two internal factors ofempowerment and resilience, and the one external factorof timely access to resources.Low-level wellness. Low-level wellness or caregiver

distress is almost always synonymous with significantpoints in the caregiving cycle, such as when a caregiver isfirst called on to care for a sick or disabled loved one,crisis situations or care transitions. Low-level wellness isnot healthy for you or your loved one. Although each of the parts to the puzzle is present in

the wellness model, none of the pieces connect when acaregiver is in distress. Low-level wellness will likely continue until you are

empowered to ask for and accept help, whether fromhealthcare professionals, friends or family members. Thereis no set time frame, however, for you to move fromdistress to manageable stress (medium-level wellness).The transition requires workable solutions, access toinformation and resources, and intervention strategiesthat you deem helpful.

Caregiver Wellness: It’s Up to ‘U’WRITTEN BY EBONI GREEN, Ph.D., RN

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Please take this opportunity to assess your level ofwellness according to the model. There are ninequestions, each represented by a puzzle piece on themodel. Answer each question openly and honestly.Assign two points if you agree with the statement andone point if you somewhat agree, and do not assignany points if you do not agree with the statement.

Psychological Wellness I have positive ways to cope with daily stressors.

Social Wellness I am satisfied with the number and quality of socialsupports available from family, friends, church andthe community.

Physical Wellness I exercise on a regular basis, participate in physicalactivity without bodily pain, and am at a healthyweight; my blood pressure is controlled; and myalcohol consumption is limited.

Intellectual Wellness I actively seek education to improve care for my lovedone and apply what I have learned to improve thehealth and wellness of myself and my loved one.

Occupational Wellness I feel satisfied with the support I receive in theworkplace.

Spiritual WellnessI am able to take time away from caregiving to attendto my spiritual needs.

Financial Security I have access to adequate resources to pay for thecare and special needs of my loved one, my familyand myself.

Empowerment I feel fully engaged in implementing behaviors thatwill aid in successful caregiving.

Take a Look at ‘U’


ResilienceI am able to adjust and adapt in a healthy andflexible way to the ever-changing roles associatedwith caring for my loved one.

Score:

Evaluating Your Score on the U ModelA score between 0 and 5 represents low-level wellness. A score between 6 and 9 represents medium-level wellness. A score of 10 or higher represents high-level or optimum wellness.

Once you have completed the questionnaire,compare your scores to see where you are doing thebest in terms of self-care, and where you might seekhelp to assist you in taking better care of yourselfand your loved one.

For example, if you identify financial security asan area of opportunity for education, you mightconsult with a financial planner. The goal would beto design a financial strategy that benefits thespecial needs of your loved one, other familymembers and yourself.

If you unearth a gap in emotional support, youmight want to participate in a support group or anonline discussion board to improve yourpsychological wellness. Sharing can be a useful wayto cope with the emotional demands associated withcaregiving. These forums also offer the chance tocommunicate your knowledge about your caregivingsituation, abilities and successes, which is a greatway to reinforce the positive aspects of your role.

Using the results from your self-assessment canhelp you reach the goal of optimum wellness.Caregiver wellness is up to U!

—EBONI GREEN

Medium-level wellness. Themovement from low-level wellness tomedium-level wellness or caregiver stressis dependent on your ability to reach out forand accept assistance for you and your loved one,and your willingness to try new approaches to the caregivingsituation. Self-responsibility is in play.Once a caregiver reaches medium-level wellness, the puzzle

pieces representing empowerment and resilience areconnected. The stress that accompanies medium-level wellness may

not be immediately relieved until you achieve a level ofcomfort with interventions and supports. For example, if ahome care agency is not dependable or there is a suddenchange in a loved one’s mental or physical status, you mayreturn to a stressful situation until you once again feelempowered to seek more assistance.High-level wellness. Once adequate supports for your

loved one and yourself are in place, you have the opportunityto move from medium-level wellness to high-level wellness oroptimum wellness. The transition relies on the integration of

empowerment, resilience and reaching apoint of stability with physical, social,

emotional, spiritual, intellectual, occupationaland financial wellness.

Achieving optimum-level wellness is a process thatwill take time; it is not recommended that the integrationoccur at once, nor is it likely to. The best strategy is to placecontinuing emphasis on putting together all of the piecesuntil the puzzle is complete.

EBONI GREEN, Ph.D., RN, of Omaha is co-founder with herhusband, Terrence, of Caregiver Support Services, an Omahanon-profit organization that specializes in supporting familyand professional caregivers across the lifespan throughtraining courses, support groups and other direct services.She is the author of two books, “At the Heart of the Matter:A Spiritual Guide for Caregivers” and “Caregiving in the NewMillennium.” Green conducted the “Caregiver WellnessSurvey” as part of her doctoral dissertation in 2009, andsubsequently developed the “Caregiver Wellness: U Model.©”


take care of yourself From morning to midnightphySical

Catch some Zzzz’s: Sleep an extra half hour.empowerment

Give yourself a thumbs up!Recognize your strengths.

reSilienceShake your family tree:

Be willing to share the care with others.

SpiritualEmbrace nature:

Watch the snow fall.

pSychologicalFeel the warmth: Sip a cup ofhot chocolate while re-reading

your favorite book.

occupationalBright ideas: Check

your company’s employeeassistance program.

intellectualAbsorb as much knowledgeas you can—and apply it!

SocialCuddle with a pet—yours or a friend’s!

FinancialCrack open the piggy bank:Locate grants/programs toassist with caregiving costs.

For more self-care strategies, visit www.carecrossroads.org; click on “learn.”

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e live in an era of incredible medical advances—from joint replacements to organ transplants. Wecan treat an ailing heart and assure longer life andquality of life for many individuals with chronic

diseases. Yet, with all the available diagnostics, surgeries andmedical treatments, we still have not found a cure for death. With loved ones who have advanced Alzheimer’s disease or a

related dementia, at some point the human body “wears out,”and it is time to consider what the best care is for them at theend of life.For family members, the first step in end-of-life care is a

care planning discussion. Some call it a “kitchen tablediscussion” because it is the kind of talk that families have allthe time over a cup of coffee at the kitchen table.The conversation should occur as early as possible, ideally

when your loved one still has decision-making capacity and can

express wishes about treatment and care. As well, the besttime to start talking about these choices is before a crisisstrikes. Advance care planning includes creating an advance

directive (sometimes known as a living will), a written legaldocument that states a person’s wishes related to medicaland end-of-life care; and drawing up a durable power ofattorney, a legal document that names the person or peoplewho can make decisions if the ill person is unable to do so.Most importantly, though, it is a family discussion aboutvalues and care wishes.The conversation should include:• Where would you like your care if you could no longercare for yourself?

• What kinds of medical treatments would you want? Forexample, would you want cardio-pulmonary resuscitationand intubation (CPR) if your heart stopped; antibiotics;artificial nutrition and hydration (feeding tubes and IV’sat the end of life); hospitalization, including intensivecare; and/or special care choices at the end of life?

• Who would you want to make decisions for you if youcould no longer speak for yourself?

The answers to these questions should be reflected in theadvance directive and power of attorney. Copies of thesedocuments should be given to the person’s doctor, local


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“I believe we have a lot to learn from caringfor patients with advanced dementia who are dying. We must learn about being present in the moment, letting go and grieving along the way.”

– Angela Lee, RN, Tacoma, WA

WRITTEN BY LINDA NORLANDER, RN

A ‘Kitchen Table Discussion’: Embracing End-of-Life Care

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hospital and all family members who might be called on tohelp make difficult medical decisions.Absent this type of discussion, families can find themselves

in a challenging and emotional turmoil when their loved one’sdeath is at hand.Consider Susan Marcello’s story.* She describes sitting in

the hospital with her mother, who had both early stagedementia and breast cancer. Marcello was trying to fill out ahealth care directive so she would be able to honor hermother’s treatment and care choices.“Mom was so sick, on pain killers and IV antibiotics, and

here I was asking her about resuscitation. She was tooconfused to answer my questions. I wish I’d talked with herabout this much earlier,” Marcello said.Among other topics that should be discussed are palliative

care and hospice care—terms that describe special carechoices. Palliative care refers to care that focuses on maintaining

quality and comfort. It can be provided along with standardcare and is offered to seriously-ill people at any time duringtheir illness, regardless of life expectancy. Palliative care is about pain and symptom management,

but it is also about guiding individuals and families throughsome of the difficult decisions that have to be made,including those that need to be made as a terminally-illperson nears the end of life. Many hospitals, home health agencies and hospice

programs provide some type of palliative care, usually with ateam that includes doctors, nurses, social workers and clergy.Medicare and Medicaid cover some of the treatments, andprivate health insurance might pay for some services.When someone on palliative care is likely to pass away

within six months, the transition is typically made to hospicecare.Hospice care also focuses on comfort, quality and

relieving symptoms. It is provided to people with a lifeexpectancy of six months or less who are no longer seekingcurative or life-prolonging treatment but are seeking comfortcare. Most hospice care occurs in a person’s residence, whether

a traditional home, adult family home, assisted living facilityor nursing home. It is a covered benefit under Medicare,Medicaid in most states, and most insurance plans. Provided by a hospice organization or other healthcare

organization, hospice care includes a care team consisting ofdoctors, nurses, social workers, spiritual counselors, hospiceaides, volunteers and bereavement counselors to support theterminally-ill person and family members. This service alsocovers medical equipment such as a hospital bed and oxygen;

medications and medical supplies needed for comfort; andbereavement follow-up for the family.How do you know when it is time to consider palliative

care or hospice care? Even the most gifted doctor doesn’tcarry a crystal ball when it comes to a projected time ofdeath. However, a number of factors can help predict that aperson is reaching the last years, months or days of life. Indicators that someone with advanced dementia might

be close to death include: two or more emergency roomvisits or hospitalizations in the last six months; progressiveweight loss or loss of appetite; inability to control bowels orbladder; progressive loss of speech; and any life-threateningdiagnosis such as cancer, congestive heart failure or kidneyfailure. If any of these changes occur, it is a good time to speak

with a doctor about special care choices.John Conroy’s family decided to enroll him in hospice

following his second hospitalization for pneumonia. Livingwith Alzheimer’s disease for six years, he now was mostly inbed and often did not recognize family members. His familypreferred not to hospitalize him if he would developpneumonia again. Fortunately for Conroy and his family, Conroy, when he

was still able, had made an advance directive noting that hewanted to die at home and did not want any extraordinarymeasures to keep him alive.Put on hospice care, Conroy received regular visits from a

nurse, social worker and health aide. The nurse made surethat he was comfortable, including working with his doctorto regulate pain medications. The social worker assisted his


SNAPSHOT OF HOSPICE CAREThe National Hospice and Palliative Care Organization,Alexandria, VA, annually holds a creative arts contest,which highlights the artistic accomplishments of itsmembership throughout the country. Winning entries,which include photos, essays and poems, reflect positive messages about hospice and palliative care.Here, we’ve included photos (reprinted with each

photographer’s permission) from the 2010 contest:Photography First Place, Adult Category—“GraduationDay” by Beth Logan of Hospice Savannah, Savannah,GA; and Photography Honorable Mention—“Mood,Her Constant Companion” by Terri Roberts of Columbus Hospice of Alabama of Phenix City, AL.

DETAILS www.caringinfo.org 800.658.8898

wife and daughter in getting extra help inthe home. He was given a hospital bed anda hospice aide to provide personal care.The spiritual counselor assisted his wifewith funeral plans, and a volunteer came tostay with Conroy two days a week while hiswife went on errands. Ultimately, Conroy died comfortably in

his own home surrounded by his wife,daughter and grandchildren—exactly theway he had wished to pass away.In caring for a dying loved one, the best place to start is

with the basics. Most people want to be in the comfort oftheir own residence. They prefer to be cared for withcompassionate hands and remain as independent as possible.For someone with advanced dementia, familiarity with theenvironment and caregivers can help reduce anxiety andfear. Perhaps the most important care you can offer is your

presence and your assurance that you will be there. Care forany dying person is multi-dimensional and includes physical,emotional and spiritual aspects. Research indicates thatpeople with advanced dementia might not be able to speak,but their spirituality and essence still exist, locked deepinside them. Sharing familiar prayers, poetry or hymns areways to be present.“I see my patients with advanced dementia as capable of

still having joy, connectedness and sadness,” said Angela Lee,a Tacoma, WA–based hospice nurse. “We have to simplify theexperience for them—less words and more presence, moretouching, sitting in silence, soft words or listening to an oldhymn to connect with their faith.”Other care might be more complex, such as using

medications for pain, sleeplessness or anxiety, or caring forsomeone who is bedbound. Palliative and hospice careprofessionals can provide the expertise to help you managethese complexities.

Most people who are at the end of lifeexperience some distressing symptoms. Forsomeone with Alzheimer’s disease who isunable to tell you what is wrong, it is importantto pay attention to other cues. Common signsthat a person is in pain include restlessness andanxiety, hitting or striking out when moved,and facial expressions such as grimacing. Beyond pain medication, pain and anxiety

can also be relieved with alternative therapiessuch as gentle massage, soothing music or even havingsomething soft to hold on to. One hospice program providesdementia clients with small quilts made of different fabric andtexture squares.There is no doubt that caring for a loved one with advanced

dementia can be exhausting, especially as the journey nearsan end. Rule number one: Only by taking good care of yourself will

you be able to care for your loved one. Here are some tips:• Be willing to accept help from family, friends or paidcaregivers.

• Take time for yourself. A few quiet moments or a block oftime can be renewing.

• Pay attention to your own physical needs. Are you gettingenough sleep, proper nutrition and exercise?

Caring for a loved one who is dying requires a combinationof practical know-how, calmness and endurance, and awillingness to let others help. Most importantly, recognizethat your care is a final loving gift.

*Names have been changed to preserve confidentiality.

LINDA NORLANDER, RN, of Tacoma, WA is the author orco-author of several books, including authoring theaward-winning “To Comfort Always, A Nurse’s Guide toEnd-of-Life Care” (Sigma Theta Tau, 2008). She is associatedirector of Group Health Cooperative’s home care andhospice program in Tacoma.

“”

Perhaps the most importantcare you can offer is your presence…

When the light of your spirit fadesThe weight of time is heavy on your faceEvery memory of who you are starts to gray

When each breath takes away your strengthWhen your life deep inside grows faintAll you used to be sure of has gone away

I'll remind you how great you've always beenAnd how great you areI'll remind you you made me all I amYou brought me so far Always selfless, strong and true I learned how to love because of youWhen you forgetAll you have meantI'll remind you

When you can no longer standYou rely on another's handRest assured, I will be there even then

When you doubt all you ever wereAll your triumphs become a blurI promise you ... you will always know your worth

'Cause I'll remind you how great you've always beenAnd how great you areI'll remind you you made me all I amYou brought me so farAlways selfless, strong and trueI learned how to love because of you

I'll remind you how great you've always beenAnd how great you areI'll remind you you made me all I amYou brought me so farAlways selfless, strong and true I learned how to love because of youWhen you forgetAll you have meantI'll remind you

© 2009 Jessica June Rose Music (ASCAP) / Lit Like Beale Music (ASCAP). All rights reserved.


LYRICS BY JESSICA JUNE ROSE AND JASON HENKE

[HEART AND SOUL]

I'LL REMIND YOU

JESSICA JUNE ROSE AND JASON HENKE areNashville-based songwriters. One of Rose’s closefriends was diagnosed recently with Alzheimer’sdisease, and his wife reads the lyrics of “I’ll RemindYou” every morning. “She said it really helps heranswer him the same way—even when he's asked thesame question five times,” Rose said. “We feel soblessed to have written this song and feel theresponsibility to share this message with theAlzheimer's community.” To watch the music video,visit www.youtube.com/user/jessicajunerose.

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[BEST FOR LAST]


A LIVING DOLL While they may not be made of flesh and bones, babydolls are stirring very real emotions in women andmen with Alzheimer’s disease. Building on a parent’sunconditional love and desire to care for a child,dementia care experts are turning to dolls to offercomfort and memories of happier times. “In almost every case, people respond in a positive

way when given a doll,” according to Jacque Mays,founder of Dolls 4 Alzheimer’s, a nonprofitorganization in Bend, OR. A doll can provide companionship and a sense of

purpose—like prompting someone who is not eating tostart eating again because the baby needs to be fed.Moreover, holding a baby doll fosters nurturing and thepleasurable feelings of caring for someone, rather thanbeing cared for.

Here are some ways to utilize baby dolls as a meaningful activity:

Ask the person with dementia to describe what his or her child or children looked like as a baby.Match the hair color, eye color and skin color sothe baby is familiar. The more lifelike, the better.

Encourage family members, healthcareprofessionals and others to treat the doll like it is a baby.

Introduce the doll in the later stages of the diseasesince people in the advanced stages tend to dwellmore on the past. If the person rejects the doll, donot force the activity and try again when the illnesshas progressed further.

Ensure that the doll has no magnets or devicesthat would interfere with pacemakers.

Consider using the doll as a calming mechanismwhen someone becomes agitated—a commonbehavior with Alzheimer’s disease.

Foster interactions between people with dementiaand relatives or healthcare professionals by givingcaregivers a specific role with the doll in whichthey can interact with the person with dementia.

Use the dolls to promote family conversations byreminiscing about past memories or revisitinghappy experiences that remind the person of hisor her children or own childhood.

Do not close the doll’s eyes since the person maymistakenly, and fearfully, think that the doll maynot wake up.

Take cues: If the doll user thinks the doll is sick,offer to take the baby to be checked, and thenbring the doll back with the assurance that thedoctor said everything is okay; or, if the person istired, offer to babysit.

Revive interest, should attention begin todecline, by bringing in a new outfit or blanket forthe doll.

Use the dolls as an intergenerational activity withgrandchildren and great-grandchildren.

This article is based on an interview with Jacque Mays,director of Dolls 4 Alzheimer’s, a nonprofit organizationin Bend, OR that provides education about doll therapyand sells lifelike dolls (at cost) to families and facilitiesfor use with people with Alzheimer’s disease. It began itsprogram four years ago with a grant from theAlzheimer’s Foundation of America.

DETAILS www.dolls4Alzheimers.com 541.389.2100

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