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Geriatric Care Management

FALL 2004

NUMBER 2

VOLUME 14

Published by the

NationalAssociation ofProfessionalGeriatric CareManagers1604 North CountryClub Road

Tucson, Arizona85716-3102

520.881.8008 / phone

520.325.7925 / fax

www.caremanager.org

Guest Editor’s Message: PromotingGood Principles of Dementia Careby Karen Knutson, MSN, MBA, RN

page ....................................................................................................................... 2

Anosognosia or Denial of Deficit in Dementia:A Challenge for the Geriatric Care ManagerPatricia Gross, Ph.D., ABPP-CN

page ....................................................................................................................... 3

Better Outcomes for Clients with Dementiain a Retirement Community SettingKaren Knutson, MSN, MBA, Dana Bradley, PhD, Suzanne Langner, PhD and MaryCooper, RN, NHA

page ....................................................................................................................... 9

Health Care Planning For Married CouplesIn The 21st Century In The Face Of TerriSchindler-Schiavo – An Ever Broadening RoleFor Geriatric Care Managers ThroughAppropriately Prepared Advance DirectivesBy Jan L. Warner

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G U E S T E D I T O R ’ S M E S S A G E

Promoting GoodPrinciples of Dementia Care

by Karen Knutson, MSN, MBA, RN

Published by the:National Association of

Professional Geriatric Care Managers1604 North Country Club RoadTucson, Arizona 85716-3102

www.caremanager.orgPublished quarterly for members of GCM

Non-member subscriptions: $95.00 per year

© Copyright 2003The GCM Journal is published as a membership benefit to membersof the National Association of Professional Geratric Care Managers.Non-members may subscribe to GCM Journal for $95.00 per year.Send a check for your one-year subscription to: Subscription Depart-ment, GCM, 1604 N. Country Club Road, Tucson, AZ 85716-3102.

EDITORIAL BOARD

Rona Bartelstone, MSWFort Lauderdale, FL

Lenard W. Kaye, Ph.D.Bryn Mawr, PAKaren Knutson, MSN,MBA, RNCharlotte, NCMonika White, Ph.D.Santa Monica, CA

EDITOR--IN CHIEFMarcie Parker, Ph.D.Golden Valley, MN

PUBLICATIONSDIRECTORJonathan D. BoyleTucson, AZ

GRAPHICDESIGNERKristin L. HagerMcKinney, TX

Is theremore? Theanswer is aresounding YES!The articles inthis issue of theGeriatric CareManagementJournal will offernew insights andapproaches as towhy dementia is still invisible in oursociety. Selected issues have beenchosen to provide more understand-ing of the complexities of clientfunctioning and how dementiainterrupts relationships with family,friends and providers. Hopefully youwill find suggestions as to how you

It’s insidious, it’s frightful, it’sdemanding and it’s complex. It raisesmany questions and has few an-swers. It’s dementia. It comes inmany forms and etiologies. Itrepresents one of the greatest andgrowing challenges to our agingpopulation and to the care managersresponsible for clients’ care.

Everywhere we go we see familycaregivers dealing with issues ofaging relatives and dementia such asAlzheimer’s disease. Why is it thenthat the common experience ofdeveloping dementia late in life is stillinvisible in our society?

Is it myths about aging? Mythsthat keep this vulnerable populationinvisible? How often as a caremanager are you faced with theattitude “of course she has memoryimpairment, she’s in her 80’s?” Suchmyths make dementia seem inevitableto happen. Or do you talk to profes-sionals who say “there is nothing wecan do and send potential clients offto facilities without a dementia workup or thoughtful consideration ofpreferences, needs or financialresources? “Turning a blind eyeprevents better solutions” you say toyourself. “If only I had been given achance to work with this family”!

Is it hard to distinguish thediseases of dementia from normalaging, and harder yet to get adementia work up? Or is it that wewant our relationships to continue asnormally as possible and so weassign the cause to something forwhich we do not feel responsible,thus leading to a delay in seekinghelp? Family caregivers report “all ofthe above” and to an overwhelminglack of support and understandingavailable to them at this time.

Geriatric Care Management

(continued on page 3)

It’s insidious, it’sfrightful, it’s demanding

and it’s complex. Itraises many questionsand has few answers.

It’s dementia.

can betteridentify theseinvisible clientsearly on and helpfamilies, friends,and otherprofessionals inthe process.

The firstarticle“Anosognosia

or Denial of Deficit in Dementia: AChallenge for the Geriatric CareManager” by Patricia Gross de-scribes case studies of clients whodeny dementia and are unaware oftheir deficits. Dr. Gross explainschanges in brain functioning that lead

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to decreased self awareness and lackof insight into behavior. As a clinicalneuropsychologist with 20 years ofpractice she differentiates denial inpsychological terms which she says israrely involved in denial of deficitshown by her patients with dementia.She explains how individuals withdementia lack cognitive capacity andthe impact of this loss. Commonissues related to anosognosia arediscussed as well as interventions toimprove care and make care manage-ment easier.

The second article “BetterOutcomes for Clients with Dementia ina Retirement Community Setting”reports results from a descriptivestudy of clients with dementia in aretirement community setting. A for-profit care management company

collaborates with a non-profit CCRC toimplement a model designed toimprove services for clients in inde-pendent living, for their families, aswell as the retirement community. Thetypical client with dementia is por-trayed as undiagnosed with four co-existing chronic illnesses to manage,unaware of deficits and resisting help!The client resists services in theapartment and resists moving out to adifferent level of care. Specificbarriers, functional limitations andservices/interventions are highlighted.

Elderlaw attorney, Jan Warner,has written a thought- provokingarticle on how to legally have the bestquality of life during incapacity.“Health Care Planning for MarriedCouples in the 21st Century in the Faceof Terri Schindler-Schiavo” describes atragic scenerio when a woman withdementia remains invisible, her spousehas conflicts of interest and breaches

his fiduciary obligations, and profes-sionals turn a blind eye. Challengingus all to learn from this case, Mr.Warner recommends a team approachto health care planning with back upstrategies that include protectionssuch as written directives retaininggeriatric care managers. Examples ofclear language for documents aregiven.

It’s a wonder we can do what wedo! In spite of the obstacles andchallenges we face every day I still findthis work in dementia care the mostrewarding. So much advocacy isrequired. So much more education isneeded. As care managers we are in aunique position to promote goodprinciples of dementia care. I hope youcan apply the authors’ specificinsights and and interventions to yourpractice as you assist clients and theirfamilies through this difficult, complexand still largely invisible transition.

Guest Editor's Message(continued from page 2)

ABSTRACT: Anosognosia refersto denial of illness or of deficit inneurological disorders. The prevalenceof the condition in dementia, andparticularly in those with Alzheimer’sdisease (AD), frequently presentschallenges for family members as wellas the geriatric care manager attempt-ing to help client and family. Defini-tions, common issues related to thedisorder, and proposed interventionswill be addressed in this review.

CASE #1: Maisy’s family knew shehad memory problems for a year whenshe was diagnosed with lymphoma atage 78. Nevertheless, her son was at a

Anosognosia or Denialof Deficit in Dementia:A Challenge for the

Geriatric Care ManagerPatricia Gross, Ph.D., ABPP-CN

loss when she refused treatment after2 sessions of chemotherapy for themass on her left jaw, belligerentlystating, “I don’t have cancer.” Threeyears later, she was admitted to thehospital with apparent chest pain. Herson saw her clutch her chest twice,but after admission she denied anypain. By this time at age 81, she wasobviously in the moderate stage ofAD, oriented only to herself. She didnot know she was in a hospital, sayingit was “a camp ground”, could notgive the number of her children, andthe last president she could name wasTruman. When asked what the lumpon her jaw was, Maisy told the doctor,

“Cancer,” but denied having chemo-therapy.

INTRODUCTION: Was thepatient in Case #1 in psychologicaldenial about having cancer initially,and about the later chest pain? Was itmerely a memory problem caused byprogression of the AD? Or was it alarger issue of her awareness of anyillness or deficit, including thememory problem?

Psychological denial is a normaldefense mechanism used by individu-als to help them handle unacceptableor challenging new information. Theperson is capable of understandingand remembering the informationpresented, but is not yet ready toaccept or adapt to it. Denial inpsychological terms is rarely involvedin denial of deficit shown by thosewith dementia. People with dementiafrequently lack the cognitive capacityto fully incorporate the new informa-tion or to remember it.

As a clinical neuropsychologistwith close to 20 years of practice, Ihave helped diagnose thousands of


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patients with dementia. The majorityhad probable AD. Of those with AD,only a handful could say that theyhad the disorder and were able toexplain what Alzheimer’s diseasewas. That handful of patients wasable to say it was a brain disorderthat affected thinking and memory.Yet, when asked about their memory,they invariably said it was fine, or noworse than anyone of their age. Thisdenial of memory deficit sometimesoccurred within seconds of failingbadly on a memory test.

Denial of deficit presents adifficult challenge to the geriatric caremanager (GCM). To arrive at aclient’s door for a previouslyarranged doctor’s appointment, onlyto be told, “But I’m not sick,” or “Mymemory is fine, I don’t need to see adoctor,” is frustrating, to say theleast. The client may get upset orhostile if the point is pursued. Formost GCM’s and the families theyhelp, it is a daily challenge thatrequires walking a fine line betweenproviding enough information toreassure and persuade the clientwithout setting off a catastrophicreaction.

Anosognosia (ANOS) was firstdescribed by Babinski (1914) asdenial of illness seen in patients withneurological disorders, particularly instroke victims with hemiparesis(paralysis of one side of the body) orblindness. The term has beenexpanded to refer to a patient’sinability to fully appreciate the natureand extent of his illness (Critchley,1966). In stroke patients withhemiplegia, ANOS is generallytransient during the initial part of theacute hospitalization (Heilman,Watson, & Valenstein, 1993), but canbe permanent in some patients. Infact, in patients with right hemispherestrokes, ANOS contributes to poorerfunctional outcome and decreasedimprovement compared with thosewith left hemisphere strokes

typically associated with traumaticinjury or stroke damage to thenondominant (usually the right)hemisphere of the brain (Gainotti, 1972,1989). Patients with indifferencereactions may either deny or make lightof their disability. Gainotti felt theindifference reaction was an abnormalmood associated with ANOS, because

the expectedmood wouldexpress somelevel of attachedconcern, anxiety,or dysphoria.

Anindividual’ssense of self ishighly vulner-able to damageto the frontallobes of thebrain (Schacter,1991; Stuss,1991). Deficient

self-awareness leads to an inability toperceive errors in performance, toacknowledge the impact of such errorson others, or to assess a socialsituation appropriately (Prigatano &Schachter, 1991). For example, of thosepatients with frontal lobe tumors, 67percent act indifferent to their deficitsor are unrealistically optimistic(Hecaen, 1964).

ANOSOGNOSIA IN DEMENTIA:Patients with many forms of dementiashow evidence of ANOS. For example,it is common with Huntington’s disease(e.g., Cummings & Benson, 1983;Deckel & Morrison, 1996), in vasculardementia (formerly multi-infarctdementia), and in Parkinson’s diseasepatients who have vascular changes(Danielczyk, 1983). However, thosewith cortical dementia such as AD andPick’s disease show the greatest lackof awareness (Benson, 1983;Danielczyk, 1983; Neary, et al., 1986;Wagner, Spangenberg, Bachman, &O’Connell, 1997).

During the first year or so, manyAD patients are aware of their initialsymptoms, especially their memoryproblems (Neundorfer, 1997; Zec, 1993).Zec makes the point that loss of insightin those with dementia can vary over

Anosognosia or Denial ofDeficit in Dementia: AChallenge for theGeriatric Care Manager(continued from page 3)

(Gialanella & Mattioli, 1992).ANOS in dementia is common

(Frederiks, 1985), but patients withother disorders than dementia canshow evidence of ANOS. Forexample, alcoholics frequentlyunderestimate and deny their memoryproblems (Ryan & Lewis, 1988), andpatients with right-sided seizure focustend to have moredenial of deficit(Bear & Fedio,1977). Traumaticbrain injury oftencompromisesawareness ofcognitive andfunctional deficits(Damasio &Anderson, 1993;Prigatano &Schacter, 1991;Toglia & Kirk,2000). Theseverity of ANOScan range from a “critical underestima-tion” of a specific deficit to “explicit,intractable denial of phenomena”(Bisiach, Villar, Perani, Papagno, &Berti, 1986).

CASE #2: Derek was a 26 year-old-man seen 1 year following a severebrain injury from a motor vehicleaccident. He appeared to haverecovered well, but his father reportedmarked judgement problems. Forexample, Derek bought a $13,000 pick-up truck, but did minor damage to it byrunning through a ditch. Rather thanrepairing the truck, which would nothave cost very much, he sold it for$3,700 just 5 months after purchasingit. He admitted he lost a lot of money,but acted unconcerned about it,saying he needed the cash to move inwith his girlfriend. When asked if hewould make the same decision again,he blandly said, “Yeah, it’s not thebest decision, but I needed themoney.”

Critchley (1966) describedanosodiaphoria, in which the patientwill admit neurological deficit withoutany show of concern. This conditionis also known as an indifferencereaction. Case #2 represents anindifference reaction, which is

To arrive at aclient’s door for a

previously arrangeddoctor’s appointment,only to be told, “ButI’m not sick,” or “My

memory is fine...

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time and across symptoms. It is rarelyan “all or nothing” event. Somestudies have reported on the variabil-ity of insight shown by patients withdementia (Neary, et al., 1986).

Early in the progression of AD,there is extensive loss of cholinergicneurons in the nucleus basalis ofMeynert, or basal forebrain nucleus(Coyle, Price, & DeLong, 1983).Acetylcholine is a neurotransmitter ,or brain chemical compound, that isessential in cognitive functions,including memory. Cholinergicneurons innervate wide areas offrontal cortex, as well as other brainareas. This change in frontal lobefunctioning may lead to early de-creased self-awareness in AD patientsthat eventually becomes full-fledgedANOS. Moreover, in AD patientswith ANOS, SPECT scans revealdecreased regional cerebral blood flowin the right frontal lobe compared toAD patients without ANOS (Reed,Jagust & Coulter, 1993; Starkstein,Vasquez, Migiorelli, Teson, et al.,1995). Thus frontal lobe compromise,particularly right frontal lobe, may benecessary for ANOS in AD.

Insight into their own behavior israpidly compromised in the earlystages of AD (Lezak, 1995). Aware-ness declines with disease progres-sion (Anderson & Tranel, 1989; Gil,Arroyo-Anllo, Ingrand, Gil, Neau,Ornon, & Bonnaud, 2001; Starkstein,Chemerinsky, Sabe, Kuzis, Petracca,Teson, & Leiguarda, 1997). Thepatient may in fact report improvedmemory as he loses awareness of hismemory deficits (McGlynn &Kaszniak, 1991b).

CASE #3: Delores, a 73-year-oldwoman with a 3-year AD course, toldthe doctor she did all of the cookingat her house without help. She saidshe did all the cleaning as well,because “who else would?” Whenasked where she lived, Deloresclaimed that she lived by herself in

her own house. The daughter andson-in-law sitting in the interviewwith her said that, in fact, she hadmoved in with them 2 1/2 yearsbefore and had done no cooking orcleaning in that time.

As shown by Case #3 above,AD patients have impaired judge-ment of their ability to performeveryday tasks (Duke, Seltzer,Seltzer, & Vasterling, 2002; McGlynn& Kaszniak, 1991a). Patients withmild to moderate dementia are lessaware of errors in daily actions suchas grooming or meal preparation, andmuch less likely to correct their errors(Giovannetti, Libon, & Hart, 2002).They were aware of 20% of theirerrors compared to 73% awareness inhealthy older controls. Omissionerrors are more common thancommission errors, and tend toincrease with dementia severity(Buxbaum, Schwartz & Montgomery,1998; Giovanetti, Libon, Buxbaum, &Schwartz, 2001). Omission errors aremuch more difficult to monitor for theclient, and thus less likely to becorrected.

Studies have shown that ADpatients greatly overestimate theirmemory abilities (Schacter,McLachlan, Moscovitch, & Tulving,1986) and greatly underestimate theirdaily cognitive problems comparedwith relatives’ ratings (McGlynn &Kaszniak, 1991a, 1991b). The latterdiscrepancy increases with diseaseseverity.

ANOS also leads to patients’failure to take appropriate precau-tions, particularly with driving(Cotrell & Wild, 1999). The client’slack of awareness can be quitedangerous to themselves and others,as families sometimes learn too late.A client with dementia and severelylimited awareness of his deficitsneeds a referral to an occupationaltherapy driving evaluator. O.T.driver’s screening and on-the-roadtests are available at most majormedical centers with a physicianreferral.

ANOS probably consists ofmore than a single factor or con-struct. For instance, a cognitiveunawareness (CA) factor was

associated with illness duration whilea behavioral awareness (BA) factorwas not (Starkstein, Sabe,Chemerinski, Jason & Leiguarda,1996). The CA factor includedmemory, calculation, praxis, time andspatial orientation, and abstractreasoning. The BA factor consistedof irritability, selfishness, emotionallability, and instinctive disinhibition.The CA factor was correlated withdelusions.

In mild to moderate AD, aware-ness of cognitive deficits, moraljudgements, and prospective memorywere most disturbed, while theawareness of personal identity andmental body representation wasrelatively intact (Gil, et al., 2001). Giland his colleagues concluded that ADpatients may have difficulty maintain-ing both sequential and simultaneous“attention to life.” In other words,those with ANOS miss the big picture.They not only can’t see the forest forthe trees, but they eventually focusonly on individual pine needles, tostretch an analogy. The case belowillustrates this.

CASE #4: Roger, a 69-year-old retiredairline pilot, had shown 2 years of ADchanges. He was fixated on an eventthat occurred 2 years earlier when hebegan to display symptoms of AD.While waiting to board a plane as apassenger, he was given a routinesearch at the airport. He expresseddeep outrage at the search: “Theytook off my shoes, my belt, and ran awand over me. They searched mybags without my presence.” Onquestioning, he easily explained theevents of 9/11, knew the Office ofHomeland Security was “to preventterrorism,” and knew refusing thesearch would have meant not flying.He clearly had the memory andcomprehension of each item in thesequence, but failed to integrate them.He furiously insisted, “I shouldn’thave let them search me.” His wifeadded that he frequently ranted aboutthe event.

Another term for attention to lifeis reality monitoring, or the ability todiscriminate one’s own intentions


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from one’s actions, or internal fromexternal events (Johnson, 1991;Johnson & Raye, 1981). There may beconfusion between an internal thoughtand the external reality. For example, aperson may think about paying hisbills and then assume they were paidbecause he remembers having thoughtabout it. This can lead to a disassocia-tion between error recognition anderror correction.

In my evaluations, I typically havepatients perform clock drawings. Thepatient is asked to place numbers andhands on a large circle. Even with lessthan a year of cognitive decline, apatient will often remark, “That’swrong,” after placing numbers orhands incorrectly, but almost invari-ably fail to correct the mistake. He mayspontaneously state what should bedone to correct it, but still not attempta correction. When asked if he wishesto change the drawing, the response isoften, “Well, it’s good enough.”

TREATMENT ISSUES:The patient or client who is

unaware of his own deficits is unlikelyto attempt to compensate for them(Crosson, 2000). He will fail to utilizestrategies or compensatory devices ifhe cannot accurately evaluate his ownabilities (Zec, 1993). For example,stroke patients with ANOS during theacute stage frequently refuse physicaltherapy and other hospital treatment,and may become hostile and belligerent(Kaufman, 1995). Similarly, the womanwith AD cited in Case #1 aboverefused treatment for cancer.

ANOS can coexist with depression(Kaufman, 1995). In those cases,treating depression can help treatment,as the patient may not have asnegative an outlook and may be moreamenable to attempting other treat-ments or interventions. The GCMshould advocate for treatment of thedepression through pharmacotherapy.Clients with ANOS and depression areunlikely to benefit from psychotherapy

as their cognitive deficits are generallytoo severe by the time the limitedawareness becomes marked. Similarly,treatment for anxiety or other psychiat-ric conditions can help improve aclient’s awareness level.

The medications that weredeveloped to slow the progression ofAD are acetylcholinesterase inhibitors.They allow more acetylcholine toremain present, particularly in thefrontal lobes of the brain. Within thefirst to second year of symptom onset,some AD patients can show a markedimprovement in cognitive function andsome functional improvement. Sincethe neurotransmitter involved maybenefit frontal lobe function, aware-ness of deficit and general awarenessmay show some improvement.

GCM’s should make sure the clienthas had an adequate evaluation todetermine the type of dementia, andthat the client is on the appropriatedose of one of the three commonlyused medications. The four medica-tions are Cognex, Aricept, Exelon, andReminyl, though Cognex is rarely usednow because of its more severe sideeffect profile that can include livertoxicity. The dose should be taken upto the highest recommended level. Forexample, sometimes a client is startedon the 5 mg. dose of Aricept, which isnever increased to the higher 10 mgdose, which led to the best outcome.

Naturally, anything that adverselyaffects the client’s thinking andreasoning abilities is likely to impacthis or her awareness level. The GCMshould help the client to eliminatealcohol and caffeine use. The client’sfamily needs to understand thereasons, as they often feel that theprofessional is trying to “take away”one of their loved one’s few pleasures.Since alcohol is metabolized moreslowly in older people and affectsthose with dementia more severely,even small amounts can lead to greatercognitive and awareness problems.Caffeine constricts blood vessels inthe brain, leading to less oxygen andglucose availability and a higher riskfor blockage and subsequent stroke.

Although tobacco use is equallyan issue in those with limited aware-ness, it is a much harder habit to break

and may need physician intervention.Ensure the safety of the client withdementia and ANOS who still smokesby guaranteeing that smoking occursunder direct supervision. Lightingmaterials (lighter, matches) need to beunder the caregiver’s control. Someclients will agree to smoke outside,which reduces the risk of fire.

ANOS has been associated withincreased caregiver burden(DeBettignies, Mahurin, & Pirozzollo,1990; Seltzer, et al., 1997). Thus, theGCM’s effort to increase the client’sawareness can decrease thecaregiver’s burden and potentiallyallow the patient to remain at homelonger. The reduction of ANOS canthus lead to greater client and familysatisfaction, since most clients andfamilies find staying in the home animportant issue and resist placementefforts.

The GCM learns many techniquesfor managing care of the client withANOS. If the client is on good termswith family members, the family shouldintroduce the GCM and be present at afew meetings to familiarize the clientwith the new person in his or her life.On the other hand, if family relationsare strained to begin with or havebecome so because of the client’s lowawareness of deficits, family may wishthe GCM to make contact without anintroduction. In that case, the GCMmay be able to say he or she was “sentby your doctor” or “recommended byyour friend, Mrs. X.”

The creative GCM may need tocome up with strategies to get in thehouse of a resistant client. A GCM Iknow has found that bringing flowers,lemonade, or a small gift helps her gether foot in the door (Knutson, 2004).Once in the door, distraction may benecessary each time the client ques-tions, “What are you doing here?”Usually keeping a steady but not-too-rapid pace through the interview helpsto avoid such questions.

Most care managers learn early toavoid directly confronting a client withhis or her lack of awareness. Evengentle confrontation tends to lead todisbelief and hostile reactions from the



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client. The GCM can help familymembers and other professionalsinvolved in client care become aware ofthe client’s decreased awareness ofdeficit. If the client insists he or shehas never seen the care managerbefore, the GCM would do well to actas if it is the first contact until later inthe visit or until the client refers to “thelast time you were here.”

Avoid using words that triggerhostile reactions, and teach familymembers to avoid them. Ask familymembers if they know of any suchtriggers. For example, if “doctor” is atrigger word, use “appointment” or“specialist” instead. Circular reasoningcan be used forpatients inmoderatedisease stage.For example:“We have anappointment.”“What for? Idon’t have anyproblems.” “It’sjust a follow-upappointment.”

Sometimesdistraction fromthe point of thevisit is neces-sary. A clientwho is veryresistant todoctor visitsmay need to betold he or she is being taken to a moreacceptable destination. The GCM cantell the client they are going to a bank,the library, or out to lunch. On the wayto the doctor, a casual reference can bemade to “your appointment” and, ifquestioned, elaborate that it is anappointment “for your eyes”, orwhatever body part the client acknowl-edges as a problem. Most clients willnot express overt anger once they arein the doctor’s waiting room or in theexam itself.

A client may vent anger after the

visit. Again, distraction may help.Once the visit to the physician is over,then the GCM can take the client to thebank, library, or out to lunch aspromised, discussing the anticipateddestination. The negative emotionengendered by the unwanted doctorvisit is then replaced by the morepleasant emotions of the outing thatwas planned. Since emotional memoryis more deeply processed than memoryfor new facts, the client is more likelyto remember the pleasant affectattached to the outing than the initialmore negative emotional state.

For very difficult clients, advanceplanning may help. Processing allpaper work in advance of the visit,contacting the doctor’s nurse, P.A., orsocial worker, and requesting animmediate room to minimize the client’sagitation may help. Geriatricians aremore likely to respond to such requests

because of theirfamiliarity withdementia behavior.Make sure thedoctor’s office orother healthcareprovider has awritten releasefrom the clientauthorizing theGCM to be presentduring office visitsand to communi-cate directly withtreatment profes-sionals.

CONCLU-SION: Mostpatients withdementia showsome lack of

awareness for their illness or deficits,or agnosognosia, with the mostprofound lack of awareness often seenin patients with Alzheimer’s disease.Though lack of awareness can be adifficult block to providing client care,some potential interventions can makecare management easier. Helping theclient’s family and other healthcareproviders to understand the limitedawareness will lead to the eliminationof roadblocks that can further assist inyour ability to provide good care.

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Babinski, J. (1914). Contribution a l’etudedes troubles mentaux dans l’hemiplegieorganique cerebrale (anosognosie). Reviewde Neurologie (Paris), 27, 845-847.

Bear, D.M. & Fedio, P. (1977). Quantita-tive analysis of interictal behavior intemporal lobe epilepsy. Archives ofNeurology, 34, 454-467.

Benson, D.F. (1983). Subcorticaldementia: A clinical approach. In R.Mayeux & W.G. Rosen (Eds.), TheDementias (pp. 185-193). New York:Raven Press.

Bisiach, E., Villar, G., Perani, D.,Papagno, C. & Berti, A. (1986). Unaware-ness of disease following lesion of the righthemisphere: Anosognosia for hemiplegiaand anosognosia for hemianopia.Neuropsychologia, 24, 471-481.

Buxbaum, L.J., Schwartz, M.F. &Montgomery, M.W. (1998). Ideationalapraxia and naturalistic action.

Cognitive Neuropsychology, 15, 617-643.

Cotrell, V. & Wild, K. (1999). Longitudi-nal study of self-imposed driving restric-tions and deficit awareness

in patients with Alzheimer’s disease.Alzheimer’s Disease and Related Disor-ders, 13, 151-156.

Coyle, J.T., Price, D.L. & DeLong, M.R.(1983). Alzheimer’s disease: A disorder ofcortical cholinergic innervation. Science,219, 1184-1190.

Critchley, M. (1966). The Parietal Lobes.New York: Hafner Publishing Co.

Crosson, B. (2000). Application ofneuropsychological assessment results. InR. Vanderploeg (Ed.), Clinician’s guide toneuropsychological assessment (pp. 95-244). Mahwah, NJ: Lawrence ErlbaumAssociates.

Cummings, J.L. & Benson, D.F. (1983).Dementia: A Clinical Approach. Boston:Butterworth’s.

Damasio, A.R. & Anderson, S.W. (1993).The frontal lobes. In K.M. Heilman & E.Valenstein (Eds.), Clinical Neuropsychol-ogy, (3rd edition, pp. 409-460). New York,Oxford: Oxford University Press.

Danielczyk, W. (1983). Various mentalbehavioral disorders in Parkinson’s disease,primary degenerative senile dementia, andmulti-infarct dementia. Journal of NeuralTransmission, 56, 161-176.



Sometimesdistraction from thepoint of the visit isnecessary. A client

who is very resistantto doctor visits mayneed to be told he orshe is being taken toa more acceptable

destination.

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DeBettignes, B.H., Mahurin, R.K., &Pirozzolo, F.J. (1990). Insight forimpairment in independent living skills inAlzheimer’s disease and multi-infarctdementia. Journal of Clinical and Experi-mental Neuropsychology, 12, 355-363.

Deckel, A.W. & Morrison, D. (1996).Evidence of a neurologically based “denialof illness” in patients with Huntington’sdisease. Archives of Clinical Neuropsy-chology, 11, 295-302.

Duke, L.M., Seltzer, B., Seltzer, J.E., &Vasterling, J.J. (2002). Cognitivecomponents of deficit awareness inAlzheimer’s disease. Neuropsychology,16, 359-369.

Frederiks, J.A.M. (1985 ). The neurologyof aging and dementia. In J.A.M.Frederiks (Ed.), Handbook of ClinicalNeurology (pp. 199-219). Amsterdam:Elsevier.

Gainotti, G. (1972). Emotional behaviorand hemispheric side of brain lesion.Cortex, 8, 41-55.

Gainotti, G. (1989). The meaning ofemotional disturbances resulting fromunilateral brain injury. In G.Gainotti &C.Cattagirone (Eds.), Emotions and thedual brain. Berlin/Heidelburg: Springer-Verlag.

Gialanella, B. & Mattioli, F. (1992).Agnosonosia and extrapersonal neglect asprediction of functional recoveryfollowing right hemisphere stroke.Neuropsychological Rehabilitation, 2, 169-178.

Gil, R., Arroyo-Anllo, E.M., Ingrand, P.,Gil, M., Neau, J.P., Ornon, C., &Bonnaud, V. (2001). Self- consciousnessand Alzheimer’s disease. ActaNeurologica Scandinavica, 104, 296-300.

Giovanetti, T., Libon, D.J., Buxbaum, L.J.& Schwartz, M.F. (2001). Naturalisticaction impairments in dementia.Neuropsychologia, 40, 1220-1232.

Giovannetti, T., Libon, D.J. & Hart, T.(2002). Awareness of naturalistic actionerrors in dementia. Journal of the Interna-tional Neuropsychological Society, 8, 633-644.

Hecaen, H. (1964). Mental symptomsassociated with tumors of the frontal lobe.In J.M. Warren & K. Akert (Eds.), Thefrontal granular cortex and behavior. NewYork: McGraw Hill.

Heilman, K.M., Watson, R.T. &

Valenstein, E. (1993). Neglect and relateddisorders. In K.M. Heilman & E.Valenstein (Eds.), Clinical Neuropsychol-ogy (3rd edition). New York, Oxford:Oxford University Press.

Johnson, M.K. (1991). Reality monitor-ing: Evidence from confabulation inorganic brain disease patients. InPrigatano, G.P. & Schachter, D.L. (Eds.)(1991). Awareness of deficit after braininjury: Clinical and theoretical issues (pp.176-197). New York: Oxford UniversityPress.

Johnson, M.K. & Raye, C.L. (1981).Reality monitoring. PsychologicalReview, 88, 67-85.

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Knutson, K. (2004). Personal communi-cation.

Lezak, M.D. (1995). Neuropsychologi-cal Assessment, 3rd edition. New York:Oxford University Press.

McGlynn, S.M. & Kaszniak, A.W.(1991a). Unawareness of deficits indementia and schizophrenia. InG.P.Prigatano & D.L.Schacter (Eds.),Awareness of deficit after brain injury:Clinical and theoretical issues (pp. 84-110). New York: Oxford UniversityPress.

McGlynn, S.M. & Kaszniak, A.W.(1991b). When metacognition fails:Impaired awareness of deficit inAlzheimer’s disease. Journal of CognitiveNeuroscience, 3, 183-189.

Neary, D., Snowden, J.S., Bowen, D.M.,Sims, N.R., Mann, D.M.A., Benton, J.S.,Northen, B., Yates, P.O. & Davison, A.N.(1986). Neuropsychological syndromes inpresenile dementia due to cerebralatrophy. Journal of Neurology, Neurosur-gery, and Psychiatry, 49, 163-174.

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Schacter, D.L. (1991). Unawareness ofdeficit and unawareness of knowledge inpatients with memory disorders. InPrigatano, G.P. & Schachter, D.L. (Eds.)(1991). Awareness of deficit after braininjury: Clinical and theoretical issues (pp.127-151). New York: Oxford UniversityPress.

Schacter, D.L., McLachlan, D.R.,Moscovitch, M. & Tulving, E. (1986).Monitoring of recall performance bymemory disordered patient. Journal ofClinical and Experimental Neuropsychol-ogy, 8, 130.

Seltzer, B., Vasterling, J.J., Yoder, J. &Thompson, K.A. (1997). Awareness ofdeficit in Alzheimer’s disease: Relation tocaregiver burden. Gerontologist, 37, 20-24.

Starkstein, S.E., Chemerinski, E., Sabe, L.,Kuzis, G., Petracca, G., Teson, A. &Leiguarda, R. (1997). Prospectivelongitudinal study of depression andanosognosia in Alzheimer’s disease.British Journal of Psychiatry, 171, 47-52.

Starkstein, S.E., Sabe, L., Chemerinski,E., Jason L. & Leiguarda, R. (1996).Two domains of anosognosia inAlzheimer’s disease. Journal of Neurol-ogy, Neurosurgery, and Psychiatry, 61,485-490.

Starkstein, S.E., Vasquez, S., Migiorelli,R., Teson, A. et al. (1995). A single-photon emission computed tomographicstudy of anosognosia in Alzheimer’sdisease. Archives of Neurology, 52, 415-420.

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Wagner, M.T., Spangenberg, K.B.,Bachman, D.L. & O’Connell, P. (1997).Unawareness of cognitive deficit inAlzheimer’s disease and related dementias.Alzheimer’s Disease and Related Disor-ders, 11, 125-131.

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IntroductionStudies of care management as a

means of promoting quality of life forolder adults and their families havefocused primarily on institution basedmodels: hospital and health mainte-nance organization; or communitybased models: area agency on aging,home health care and public health/visiting nurse association. Fewstudies evaluate the role of the privategeriatric care manager in assistinghome and community based olderadults. While research efforts havefocused on conceptualizing individualquality of life, the notion of familyquality of life is receiving moreattention.

Investigation of a new geriatriccare model was conducted in twostages at a non-profit CCRC in thesoutheastern region of the UnitedStates. A for-profit geriatric caremanagement company joined inpartnership with a non-profit CCRC toimplement a geriatric care modeldesigned to improve services forsenior residents in independent living,for their families as well as the largerretirement community.

The purpose of the overall projectwas to describe how geriatric caremanagement results in a coordinatedsystem of fluid and progressive careresponsive to changes in residentsneeds. The CCRC and geriatric caremanagement company utilized theGCM process to address the chroniclong term care needs of residents whowanted to continue living indepen-dently but were no longer able to doso without additional services (See

Figure 1: The GCM Process). Stage 1consisted of reviewing care managerrecords of a group of retirementcommunity residents who were intransition, but not ready to move toassisted living or skilled care. Stage 2,which is in progress, consists ofresponses of the family caregiver ofthe retirement community residentsfrom Stage 1. The focus of this articleis to describe the results of Stage 1.By creating a coordinated system ofprogressive care as residents needschanged, the authors were hoping tosee improved care during the transi-tion as well as reduced familycaregiver burden.

MethodThe sample for this descriptive

study represented every retirement

community resident referred for ageriatric care management assessmentand services from the period of June1997 through January 2004. Theretirement community residents inindependent living accessed thegeriatric care management servicesthrough referral. Referrals were madeto the care manager by a retirementcommunity professional or communityservice professional working with aresident or family member. The studyfocused primarily on residents whowere willing to pay for care manage-ment and other home and community-based services while remaining in theirapartment. All residents received aspart of their contract with the retirementcommunity prepared meals, housekeep-ing, apartment repairs and maintenance.

Subjective and objective data wasobtained by a master’s level caremanager in nursing, social work orgerontology. Subjective data includedexperiences of the client and family aswell as demographic and financialinformation. Objective data includedobservations made by the care manageras well as data from the functionalassessment instruments conducted inthe resident’s apartment. The func-tional assessment included physical,cognitive, emotional and socialfunctioning as well as the physical andsocial environment.

Early in 2004 the family caregivers

Better Outcomes forClients with Dementia

in a RetirementCommunity Setting

Karen Knutson, MSN, MBA, Dana Brad-ley, PhD, Suzanne Langner, PhD and

Mary Cooper, RN, NHA


F I G U R E 1 : T H E G C M P R O C E S S

INTERVIEW FAMILY DECISION MAKING

Client Review written plan of careFamily Members/Caregivers Select alternative recommendationsClient Environment Determine who will organize,

coordinate, monitor and evaluate

OBSERVE

Assess Synthesize Develop Facilitateand and Written and EmpowerScreen Analyze Plan of Family

Care Decision Making

SUPPORT THE PROCESS

Develop Knowledge, Models, Tools and ServicesCommunicate with Other ProfessionalsContinue to Improve Practice, Research, and Education

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Better Outcomes forClients with Dementiain a RetirementCommunity Setting(continued from page 9)

of residents who had receivedservices from June of 1997 throughJanuary of 2004 were contacted byphone. The initial phone call brieflydescribed the importance of the study,the sampling process and the amountof time needed to participate in atelephone interview. Familycaregivers who agreed to participatewere sent a consent form and a self-addressed return envelope. Thirteenout of fifteen retirement communityresidents participated in the project.

Stage one consisted of reviewingcare manager records of the retirementcommunityresidents. Thesample character-istics were age,gender, medicaldiagnoses,number ofchronic illnesses,functionallimitations,mental status anddepression,previous demen-tia work up,anosognosia(unawareness ofthe cognitivedeficit) resistanceto help, andservices/interventionsimplemented bythe care manager.Twenty services/interventionswere reviewed:caregiver/companion care, medicationsupervision, transportation, assis-tance with social events, exerciseprogram, fall prevention, equipment/assistive devices, nutrition interven-tion, pharmacologic intervention,ongoing care management, caremanagement reassessment, referral toprimary care provider, referral toneurologist, referral to psychiatrist,referral to opthalmologist, referral to

pain management specialist, referral topodiatrist, referral for physicaltherapy, referral for driving evaluation,referral for financial management.Data were analyzed descriptivelyusing frequency distributions.

The Mini-Mental State Examina-tion (MMSE) instrument was designedas a brief objective assessment ofcognitive functioning and as ameasure of change in cognitive status.The MMSE has moderate to highreliability and sensitivity in detectingdementia. Criticism of the MMSEincludes its failure to discriminatebetween people with mild dementiaand those who do not have dementia.The Geriatric Depression Scale (GDS)designed specifically for ratingdepression in the elderly represents areliable and valid screening scale

within this population. As part of theassessment of anosognosia theauthors reviewed the chart fordocumentation of awareness ofcognitive deficit and resistance tohelp by the respondents self assess-ment and reports by the familycaregiver in narrative form. Respon-dents were classified by functionallimitations based on the care manag-ers’ assessment as functional limita-

tions were an important indicator ofservices needed.

To evaluate caregiver burden/stress the second stage of the studyconsisted of a telephone interviewconducted with family caregivers.The instrument was a self reportquestionnaire that measured themeaning of caregiver stress. Theinstrument was adapted from theAppraisal of Caregiving Scale (ACS), aself-report instrument that measureddimensions of caregiver stress. A 36-item version of the ACS was validatedby seven family caregivers caring for afamily member with Alzheimer’sdisease. A five-point Likert-typeresponse format was used withchoices ranging from very true to veryuntrue. Caregiving demand wasmeasured by asking family members to

quantify the timeand type ofcaregivingactivities thatrequired theirgreatest time andeffort. Results ofthe second stageof the study arebeing reportedelsewhere.

ResultsFigure 2

summarizes theinformation for thethirteen retirementcommunityrespondents.Respondentsstudied were 69%female with anaverage age of86.7. The typicalrespondent hadcognitive impair-

ment with a mean MMSE score of 22,was unaware of the cognitive deficit,resisted help, had not had a dementiawork up, had vision and hearingimpairment, difficulty with balance andmobility and four co-existing chronicillnesses. Eleven respondents (85%)had Mini Mental State Examination(MMSE) scores of less than 28 out of30 suggesting cognitive impairment

F I G U R E 2 : R E S P O N D E N T I N F O R M A T I O N

Variable ........................................................................................................ %

GenderFemale .................................................................................................. 69Male ...................................................................................................... 31

Age Range70s ........................................................................................................ 1580s ........................................................................................................ 4690s ........................................................................................................ 39

MMSE ScoresLess than 28 ........................................................................................ 85

AnosognosiaUnaware of cognitive deficit ................................................................. 92Acknowledged some memory impairment ........................................... 8

No previous dementia work up .................................................................. 62

Geriatric Depression ScoresGreater than 6 out of 15 ....................................................................... 15

Co-existing medical illnesses ................................................................... 92Four chronic illnesses ......................................................................... 31

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and further evaluation. One respon-dent had an MMSE of 28 out of 30 butby history was having difficulty withrecall. One respondent had an MMSEof 30 out of 30 but by history washaving difficulty with executivefunction tasks. Twelve respondents(92%) were unaware of their cognitivedeficit and stated that they did notthink they were having memoryproblems; they resisted help fromfamily and professionals. Onerespondent (8%) acknowledged somememory impairment. Eight respon-dents (62%) had not previously had adementia workup. Two respon-dents (15%) hadgeriatric depres-sion scores ofgreater than 6 outof 15 suggestingdepression andthe need forfurther evalua-tion. Twelverespondents(92%) had co-existing chronicmedical illnesseswith four (31%)chronic illnessesas the mean.After dementia(diagnosed andundiagnosed), themost frequentlylisted chronicillnesses weredepression,hypertension,hypothyroidism,osteoarthritis andstroke.

Respondentswere classified byfunctionallimitations based on the care managersassessment. Figure 3 summarizes thefunctional limitations of the thirteenrespondents. Thirteen respondents(100%) had cognitive impairment, tenrespondents (77%) had difficulty with

balance and mobility; eight respon-dents (62%) had vision impairment;eight respondents (62%) had hearingimpairment; five (38%) in addition tohaving difficulty with balance andmobility had experienced recent fallsand walked with a walker. Tworespondents (15%) experienceddepression. Specific barriers wereidentified by chart review of the caremanager’s assessment. Thesebarriers included lack of knowledgeby residents and their families aboutavailable services, resistance by theresident to accept formal services inthe apartment and resistance tomoving out of the apartment to adifferent level of care.

After a plan of care wasdeveloped with the care manager,services/interventions were imple-

mented by the client and family. Ofthe 20 services/interventions imple-mented the ten most common arenoted in Figure 4. The most commonservices/interventions cited werecaregiver/companion care, medica-

tion supervision, transportation andassistance with social events, referralto the primary care provider andongoing care management. Ninety-two percent of the respondent recordsreviewed implemented these services/interventions. Fifty percent of therespondents receiving caregiver/companion care needed standbyassistance and supervision only.Forty-two percent needed hands onassistance with bathing and dressingin addition to standby assistance andsupervision. Eight percent neededadditional hands on assistance withwalking and toileting as well asbathing and dressing and standbyassistance and supervision. Sixteenpercent of the respondents receivingcaregiver/companion care receivedcare for their spouses as well.

Referral toprimary careprovider camenext with 76% ofrespondents.Forty percent ofthe respondentsreferred to theprimary careprovider by thecare manager werereconnected withthe primary careprovider they hadstopped seeing.Forty percent werereferred to newprimary carephysicians.Twenty percent ofthe referrals werereferred to theprimary careprovider specifi-cally for a demen-tia work-up.Ongoing caremanagement wassixth provided by69% of respon-dents. Seventhwas referral to

neurologist. Eighty-three percent ofthe respondents who were referred tothe neurologist were referred for adementia work up and 17% werereferred for follow up evaluation.

F I G U R E 3 : F U N C T I O N A L L I M I T A T I O N S

VARIABLE %

Cognitive Impairment ............................................................................. 100Difficulty with Balance and Mobility ........................................................... 77Vision Impairment .................................................................................... 62Hearing Impairment ................................................................................. 62Recent Falls, Walked with Walker ............................................................ 38Depression ............................................................................................... 15

F I G U R E 4 : T H E T O P 1 0 S E R V I C E S /I N T E R V E N T I O N S I M P L E M E N T E D

SERVICES/INTERVENTIONS IMPLEMENTED %

1. Caregiver/Companion Care .............................................................. 922. Medication Supervision ..................................................................... 923. Transportation .................................................................................... 924. Assistance With Social Events ......................................................... 925. Referral to Primary Care Provider ..................................................... 766. Ongoing Care Management .............................................................. 697. Referral to Neurologist ...................................................................... 468. Pharmacologic Interventions ............................................................ 469. Exercise Program .............................................................................. 4610. Fall Prevention ................................................................................... 46


GCMfall 2004

After dementia work-ups for clientsidentified with mild to moderatedementia 46% of the respondentsreferred received pharmacologicinterventions. Sixty-seven percent ofthe respondents receiving pharmacol-ogy interventions were started on acholinesterase inhibitor. Otherpharmacologic interventions initiatedincluded anti-depressants, anxiolytics,anti-psychotics and hypnotics.Finally, 46% of respondents receivedexercise programs and 46% receivedfall prevention programs.

Conclusion/DiscussionThe study describes how geriatric

care management results in a coordi-nated system of progressive care asresidents needs change. The studyreported is subject to a number oflimitations. Because of the smallsample size, it is not possible togeneralize to a larger population. Theresults of the current study serve as aguide for further study.

The typical client respondent wasfemale, age 86.7. had cognitiveimpairment, was unaware of the deficitand resisted help, had not had adementia work up, had vision andhearing impairment, difficulty withbalance and mobility and four co-existing chronic illnesses. While all 13respondents had cognitive impair-ment, the MMSE was not sensitiveenough in detecting mild dementiawith two respondents. The instrumentwas not intended to substitute for thebenefits of working with an experi-enced care manager. Each new caremanager must develop experience asto the instrument’s appropriate useand additional information that mustbe gathered.

The typical services and interven-tions implemented included caregiver/companion care, medication supervi-sion, transportation, assistance withsocial events, referral to the primarycare provider and ongoing caremanagement. The study identified that

62 percent of respondents had notpreviously had a dementia work up ortreatment. This result is consistentwith the literature reporting slightlyover one-third of patients withAlzheimer’s disease receive treatmentfor their dementia.

Dementia interrupts relationshipswith family, friends and providers andimpairs clientfunctioning.Often clientslack awarenessof changes orloss of function-ing.Anosognosia, orunawareness ofdeficit, interfereswith the clientaccepting helpand is associ-ated with higherlevels ofcaregiverdistress. Ninetytwo percent ofstudy respon-dents wereunaware of theircognitive deficitand resistedhelp. Clientswho are unawareof memory andother intellectualdeficits mayengage inactivities thatmight causephysical orfinancial harm to themselves andothers. Geriatric care managers needto have a greater understanding andskill in dealing with the client withanosognosia and understand how itaffects both client and caregiver. Avariety of strategies are needed tohelp family caregivers. For example,finding ways to involve the clientwhile working through the resistance;helping family members attributeresistance to the “disease process”and not purposefully creating stress;and helping family caregivers appreci-ate the clients strengths despite theresistance.

Dementia prevents the client and

family caregiver from seeking helpearly. This delay in diagnosis and carecan result in additional disabilities anddifficulty managing other chronicmedical illnesses. Geriatric caremanagers are in a unique position toaccess and maintain medical care aswell as help the client get the servicesthey need in the retirement community.

Ninety-twoof the studyrespondents hadco-existingchronic medicalillnesses with fourchronic illnessesas the mean. Theliterature reportsincreased acuteexacerbations ofcommon chronicconditions suchas diabetes andcongestive heartfailure amongindividuals withdementia increas-ing the likelihoodof hospitalizationeven in the earlystages of thedisease. Diseasemanagementstrategies aremore difficult toimplementsuccessfully inclients withknown dementia.Seventy-six of therespondents in

our study were referred to a primarycare provider. Forty percent werereconnected by the care manager withthe primary care provider they hadstopped seeing. After dementia workups for clients identified with mild tomoderate dementia 46% referredreceived pharmacological interven-tions.

Our findings help identify nextsteps to move this research forward.Questions for further research includethe following:

1. How can geriatric care managersbetter identify clients who maybe at risk for cognitive impair-

Geriatric care

managers need to

have a greater

understanding and

skill in dealing with

the client with

anosognosia and

understand how it

affects both client

and caregiver. A

variety of strategies

are needed to help

family caregivers.



GCMfall 2004

ment and encourage earlierassessment and treatment?

2. What care management skillsand interventions work bestwith clients who do notrecognize their cognitivedeficits and resist help?

3. What specific care managementinterventions optimize clientfunction, reduce caregiverburden and improve the qualityof life for everyone involvedwith the client?

4. What interventions minimize oreliminate potential hazards inthe client’s life-style and/orenvironment?

5. What medications have thegreatest benefit in prolongingfunction when implemented inthe early stages of the disease?

6. What are the most effectivestrategies in communicatingclient functioning to primarycare providers?

7. What specific strategies helpthe care manager with themanagement of other medicalconditions?

In conclusion, increased referralto geriatric care management servicesmay allow for improved health andfunctional status, earlier interventionand treatment, improved care andreduced family caregiver burdenamong frail senior residents. Clientschoose retirement communities toallow for more freedom to maintainindependence, quality of life andquality care. Progressive retirementcommunities celebrate the day-to-daysuccesses at overcoming the stereo-types and society’s perceptions ofaging by allowing residents to havemore choice and control in managingtheir lives and their well being.Geriatric care management is avaluable option for clients consideringretirement living.

As residents age in place geriatriccare managers working with complexclients can improve care and reducefamily caregiver burden by arrangingappropriate services, referring toprimary care physicians, reconnectingresidents with primary care physicianswho have stopped seeing theirphysicians and referring to otherhealth care specialists. Geriatric caremanagers play an invaluable role inadvocating for dementia work ups,appropriate pharmacologic interven-tions, treatment of other acute andchronic illnesses and educating andsupporting family caregivers tomaximize client functioning andimprove their lives.

ReferencesBrowdie R. Area agencies on aging andhome health agencies. Caring. 1992,11:3; 70-72.

Emlet C, and Hall A. Integrating thecommunity into geriatric case manage-ment: public health interventions.Gerontologist. 1991, 31: 4; 556-60.

Folstein MF, Folstein, SE and McHugh,PR. Mini-mental state: A practicalmethod for grading the cognitive state ofpatients for the clinician. Journal ofPsychiatric Research, 12, 189-198.

Haworth M. Hospital-based communityoutreach to medically isolated elders.Geriatric Nursing. 1993, 14: 1; 23-25.

Hill J, Futterman R, Duttagupta S, et al.Alzheimer’s disease and related dementiasincrease costs of comorbidities in managedMedicare. Neurology. 2002, 58:1; 62-70.

Knutson K. Dementia and the OlderAdult: The Role of the Geriatric CareManager. In: Cress, K, ed. Handbook ofGeriatric Care Management. Maryland:Aspen Publishers Inc; 2001: 207-254.

Knutson K. Family Caregiving andMemory-Impairment: why decision-making is so difficult. GCM Journal.1995, 5:4; 2-8.

Knutson K, and Langner, S. GeriatricCare Managers: A Survey in Long-TermChronic Care. GCM Journal. 1998, 8:3;9-13.

Oberst M, Thomas S, Gass K, et al.Caregiving demands and appraisal ofstress among family caregivers. CancerNursing. 1989; 12: 209-215

Parker m. Private Geriatric Care Manage-ment: How Families Are Served. Journalof Case Management: New Developmentsin Case Management Practice. 1992, 1:4;108-112.

Small G, Rabins P, Barry P, et al.Diagnosis and treatment of Alzheimer’sdisease and related disorders. JAMA.1997; 278: 1363-1370.

Seltzer B, Vasterling J, Yoder J et al.Awareness of Deficit in Alzheimer’sDisease: Relation to Caregiver Burden.The Gerontologist. 1997; 37: 1; 20-24.

Tombaugh TN, Hubley AM,McDowell I, et al. Mini-Mental StateExamination (MMSE) and the ModifiedMMSE (3MS): A PsychometricComparison and Normative Data.Psychological Assessment. 1996, 8: 1;48-59.

Yesavage J, Brink T, Rose T, et al.Development and Validation of AGeriatric Depression Screening Scale:A Preliminary Report. Journal ofPsychiatric Research. 1983, 17: 1; 37-49.

Karen Knutson, MSN, MBA, RN ispresident and founder ofOpenCare, a geriatric caremanagement organization. She hasher master’s in nursing-specializ-ing in older adults and a master’sdegree in business administration.

Dana Bradley, PhD, is an AssistantProfessor of Gerontology andPolitical Science at the Universityof North Carolina at Charlotte.Her research focuses on under-standing aging policies. Hercontributions to the field ofgerontology were recognized in2004 when she was named aFellow of the Association ofGerontology in Higher Education.

Suzanne Langner, PhD, CRNP,FAAN is Associate Professor of theDepartment of Nursing at ThomasJefferson University. She iscertified as an adult nurse practi-tioner and a fellow of the AmericanAcademy of Nursing.

Mary Cooper, RN, NHA is theDirector of Health and Wellness forSouthminster as well as thelicensed Administrator forSouthminster’s 100 bed licensedhealth center. Mary is certified asan Eden Alternative Associate andas evaluator for the ContinuingCare Accreditation Commission.This Commission evaluates seniorliving communities and shares bestpractices across the United States.


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Health Care Planning ForMarried Couples In The 21stCentury In The Face Of TerriSchindler-Schiavo – An EverBroadening Role For Geriatric

Care Managers ThroughAppropriately Prepared

Advance DirectivesBy Jan L. Warner

Given the debacle playing out inthe Florida courts surrounding TerriSchindler-Schiavo, husbands andwives throughout the United Stateswould be well-advised to take a hardlook at who will make their health caredecisions should they becomeincapacitated and their partner becomeinvolved with another person ordevelop another conflict of interest.

For those of you who have notheard or read about it, Terri Schindler-Schiavo collapsed in 1990 from as yetunknown reasons, suffered braindamage, and is cognitively disabled.Because she had not signed a healthdirective to the contrary, her husband,Michael, had priority under Florida lawto make her health care decisions andbe appointed as her guardian. She canbreathe on her own, move, and,according to her family, react tostimuli. But she has been kept alivethanks to a feeding tube because sheis not able to eat or drink. Her familycontends that even though she hasbrain damage, Terri would be able toeat and drink had her husband spentthe necessary resources for rehabilita-tion such as swallow therapy. But Iam getting ahead of myself.

After being appointed as herguardian, Husband Michael suedevery medical professional in sight,blaming them for Terri’s condition.After espousing his undying love andswearing to a malpractice jury in 1993that he would take care of Terri for the

rest of her life and make sure shereceived needed medical care andtherapy, approximately $800,000 wentto her trust for her rehabilitation, and$300,000 went directly to him for lostconsortium.

But no sooner had the ink driedon the deposit slips, than Michaelchanged his tune. After puttingTerri’s cats to sleep, Michael took upwith another woman, had two illegiti-mate children by a woman with whomhe now lives, and went to courtseeking to have Terri’s feeding tuberemoved. As the beneficiary of Terri’strust, Husband Michael now says thatTerri would not have wanted to live inthis condition were she able to expressher wishes.

So, instead of using Terri’s trustfunds for rehabilitation, to fightinfections that sometimes ravish herbody, and to give her proper dentalcare, Michael hired lawyers to take outher feeding tube and, with courtapproval, used Terri’s trust fund tohis campaign to take her life. Al-though Terri’s parents wanted to takeher home, care for her there, and letMichael keep the money, Michaelwanted Terri dead and refused to backdown. So, for years, her parents havehad to seek permission from thephilandering Michael to even visittheir daughter.

Meanwhile, Husband Michael hasrefused to follow mandatory Floridalaw that requires guardians to file

annual care plans for three years – andthe judge has given Michael extensionafter extension even though Florida lawlimits a guardian’s authority to the termsof court-approved health plans. Theupshot: many infections becauseMichael would not allow doctors totreat her or give her antibiotics, and,most recently, the removal of five teethdue to utter lack of cleaning and dentalhygiene. And Terri’s parents have nosay.

So, even though Michael Schiavohas irreconcilable conflicts of interestand has violated Florida law by notfiling mandated care plans and reportsfor more than three (3) years, FloridaJudge George Greer not only allowedMichael to continue to serve a guardian,but also ordered on October 15, 2003that Terri’s feeding tube be removed.And so the feeding tube was discon-nected for six days — until GovernorJeb Bush ordered it reinserted pendingthe outcome of even more litigation andlegislative efforts.

So what do we have here? Wehave a husband-guardian breaching hisfiduciary obligations to his wife that arerequired by law. We have a judge whohas turned deaf ears – and blind eyes —to these transgressions and has allowedthe husband to continue to serve eventhough the Florida law clearly limits aguardian’s authority to the terms ofcourt-approved health plans that havenot been filed for more than three years.We have a judge who ordered that awife to die a slow, agonizing death bydehydration and starvation in proceed-ings where funds earmarked for rehabili-tation have been used for assassination.

What can we, as professionals,learn from the Schiavo fiasco to help ourclients? First of all, each state has adulthealth care consent laws for those whodo not choose to sign advance direc-tives. These laws list, in order oflegislative priority, the relationships ofthose who will make health care deci-sions. Generally, if there is no guardianor health care proxy, spouses are first inline (unless they are separated) andthen parents, adult children, adultsiblings, and so on. This, of course,technically means that a spouse orsecond spouse of five minutes haspriority to serve as health care proxy


GCMfall 2004


Health Care Planning ForMarried Couples In The21st Century(continued from page 14)

under the law unless “good cause” tothe contrary is determined by a courtorder after an expensive proceeding.

Therefore, should there are two ormore candidates available to makedecisions at any priority level whodon’t agree – say three adult childrenor a second spouse of a few years andadult children who don’t agree — adecision in a guardianship action inthe probate or surrogate court will benecessary at great economic andemotional expense.

Since none of us – or our clients –can predict the future, none of usknow which unlucky spouse couldfind himself or herself in a situationlike Terri Schiavo. For that reasonalone, quality time and effort shouldbe put into planning for incapacitywhile we are able to do so.

For these and many otherreasons, and from my experience,health care planning – and theimplementation of that plan whennecessary – must be accomplishedthrough a coordinated, team approachthat includes “back up” strategies. Idon’t believe it is enough to advise aclient to pick an agent and an alter-nate, sign a health care directive, andleave the future to chance becausethere are too many unpredictableevents that can occur.

Therefore, I believe that as muchprotection as possible should be builtinto written health care directives inorder to protect married individualswho later become incapacitated from afate similar to Terri’s.

While I understand that mosthusbands and wives want theirspouses to make their health decisionsshould they become incapacitated andappoint them as health care agents, Ibelieve that reasons for removal of ahealth care agent should be includedin all health care documents so as toexpress the clear intent of thesignator. In this way, should theunthinkable occur, there will be clearguidance for alternate agents and ajudge who may have to make the

ultimate decision.To avoid and/or deal with conflicts

of interest like Terri Schiavo’s family isnow facing, there should be clearlanguage in the documents to guidethose who will could be makingdecisions in the future. For example:

Believing at this time that myspouse shall have my best interests atheart should I become incapacitatedand be unable to make my health caredecisions, I name, nominate, andappoint my spouse ____________ asmy health care agent to make my healthcare decisions for me; provided,however, should my spouse be at anytime romantically involved with anotherperson, such a relationship shallconstitute an absolute conflict ofinterest in which event my spouse’sappointment hereunder shall beirrevocably revoked and, in that event,I name, nominate, and appoint________________ as first alternateagent and _________________ assecond alternate agent.

In addition, language to thefollowing effect could create a priorityin the judicial appointment of aguardian:

Unless my appointed health careagent is not following my specifichealth care instructions as outlined inwriting in my health care documents,there should be no reason for theappointment of a guardian to make myhealth care decisions.

However, should my appointedagent not follow my specific writteninstructions regarding my health careduring my incapacity, I name, nomi-nate, and appoint ______________ ,____________, and ____________,in that order, to be appointed as myguardian.

In that event, I direct and mandatethat the powers and authority providedto my attorney-in-fact hereunder shallsurvive and shall not be altered orterminated by the appointment of aguardian who shall be mandated tofollow my written directions whethercontained in this document or anydocument written in my hand or signedby me before two witnesses. Since Ihave placed in writing all of my healthcare directions, any oral statements tothe contrary that any person may

attribute to me shall carry no force oreffect, and shall not be considered byany Court.

Because hospital and nursinghome visits with incapacitated personsis often withheld because of controland financial issues, language to thefollowing effect to establish visitationpolicies may solve a potential futureissue:

During any period of my incapac-ity, it is my express desire that myhealth care proxy allow me visits with[my children (my spouse), etc.] unlessmy attending physician and theadministrator of the facility where I am apatient or resident determines in writingthat said visits are contrary to my bestmedical interests.

Similarly, because some individualswish to give one or more persons otherthan their agent access to speak tophysicians and other health careproviders, I may include language,coupled with a HIPAA release, thatauthorizes this interaction.

And because the services ofgeriatric care managers are essential inmany situations, I often includerequirements in documents prepared formy clients that include a directive that ageriatric care manager be retained:

During any period of my incapac-ity, I direct that my health care agentuse such of my funds as are necessaryto hire a geriatric care manager toregularly review my medical records,assess and examine me, communicatewith my physicians, and report on mycondition to my agent and to [mychildren, spouse, etc.].

This provision is mandatorybecause I want to assure that I have thebest quality of life available to meduring my incapacity and that I receive,if it is in my medical best interests andwill help me to recover or have a betterquality of life, such rehabilitation andtherapy as my medical professionalsdeem appropriate.

And lastly, I sometimes suggest tomy clients language requiring thehealth proxy to establish and act on anappropriate health care plan with theassistance of the geriatric care manager,the physician, and the facility includ-

ing, but not limited to, the following:1. Confirmation that the current

residential setting is best suitedfor the current needs of theincapacitated person; and

2. A Plan for assuring that duringthe following quarter of a year thatthe incapacitated person is in thebest residential setting to meet hisor her care needs; and

3. Reports from the attendingphysician and care manager whoexamined the incapacitated personnot less frequently than quarterlythat contain an evaluation of theincapacitated person’s conditionand a current statement of thelevel of capacity; and

4. A plan for providing medical,mental health, dental, andrehabilitative services in thequarter year; and

5. The social and personal servicescurrently utilized by the incapaci-tated person; and

6. The social skills of the incapaci-tated person, including a state-ment of how well her or shemaintains interpersonal relation-ships with others; and

7. A description of the incapacitatedperson’s activities at communica-tion and visitation; and

8. The social needs of the incapaci-tated person; and

9. A summary of activitiesduring the preceding quarterthat were designed toincrease the capacity of theincapacitated person; and

10. An opinion each quarter bythe physician and caremanager as to whether theincapacitated person canhave any rights restored and,if so, which ones; and

A failure to discharge theseresponsibilities will result in thehealth care proxy being removed.

Of course, in some situations,there are simply not sufficient fundsto pay for this type of care; how-ever, where there is, or where thereare children who may agree to pitchin, I believe that better results willbe attained for the incapacitatedperson.

Remember: A person can makehis/her own health care decisionsunless or until he or she is incapaci-tated and can’t express his/herdesires. For that reason, health careproxies should be drafted to includethe express intentions and desires ofus who have capacity today. Noneof us would like to find ourselves ora loved on in the Terri Schiavosituation. And we can help preventit by 1) making sure that individualssign advance directives after beingfully informed, and 2) wherepossible, drafting documents to fitthe needs of the individual. If we allliked vanilla ice cream, there wouldbe no reason for all of the otherflavors.

For 17 of his more than 36 years’experience as a matrimonial, tax, andelder law attorney, JAN L. WARNERhas provided valuable information tothose who read his weekly newspapercolumns. He conceived and has co-authored Flying Solo®, a weeklynewspaper column about divorce thatis distributed by Knight-RidderTribune News Service, for 17 years. Heconceived and has co-authoredNextStepsÒ, a weekly newspapercolumn about matters affecting theelderly and disabled that is syndicatedby United Features Syndicate, for eightyears. Both have established Internetpresences (www.flyingsolo.com andwww.nextsteps.net). He hostsNextSteps® Senior Talk™, a weeklycall-in radio program on WISNewsRadio (AM 1320). He received his A.B.and J.D. degrees from the University ofSouth Carolina and earned a Masterof Legal Letters (L.L.M.) in Taxationfrom the Emory University School ofLaw in Atlanta, Georgia. He is afrequent lecturer at legal educationand public information programsthroughout the United States. Hisarticles have been published innational and state legal publications.He and his programs have beenfeatured in articles appearing inKiplinger’s, The Wall Street Journal,and many other publications. He isbased in Columbia, South Carolina.He is a Certified Fellow of the Ameri-can Academy of Matrimonial Lawyersand a member of the National Academyof Elder Law Attorneys, and manyother legal organizations. He foundedand is a principal of ElderLawServices of South Carolina, a state-wide practice of elder law(www.elderlaw-sc.com) . He can bereached at [email protected].

Health Care Planning ForMarried Couples In The21st Century(continued from page 15)

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