NON-PHARMACOLOGICAL MANAGEMENT OF BEHAVIORS IN NON ... Spring 5 Hall.pdf · Has begun to develop “Parkinson’s disease ... Changes in motor function ... Atypical symptom presentations

2009 Spring Geriatric Mental Health & Aging Conference ARIZONA GERIATRICS SOCIETY

The information in this document may not be reproduced or disclosed to unauthorized parties without the prior consent of the Arizona Geriatrics Society.

© 2009 Arizona Geriatrics Society. All Rights Reserved

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NON-PHARMACOLOGICAL

MANAGEMENT OF BEHAVIORS IN

NON-ALZHEIMER’S DEMENTIAS

Geri Hall, PhD, ARNP, CNS-BC, FAAN Advanced Practice Nurse

Banner Alzheimer’s Institute

Objectives:

• Differentiate between symptoms usually seen in Alzheimer’s disease and the more common non-Alzheimer dementias

• Describe critical differences in medication use between Alzheimer’s disease,

Frontotemporal dementia and Lewy body dementia

• Discuss the varying expectations with behavioral management between Alzheimer’s disease, Frontotemporal dementia and Lewy body dementia

DISCLOSURE OF COMMERCIAL SUPPORT Geri Hall, PhD, does not have a significant financial interest or other relationship with manufacturer(s) of commercial product(s) and /or provider(s) of commercial services

discussed in this presentation




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Slide 1

Different Strokes:Different Strokes: Recognizing Recognizing and Individualizing Care for and Individualizing Care for People with nonPeople with non--Alzheimer Alzheimer

DementiasDementiasGeri R Hall, PhD, ARNP, CNSGeri R Hall, PhD, ARNP, CNS--BC, FAANBC, FAAN

Advanced Practice NurseAdvanced Practice NurseNeurology, University of Iowa College of MedicineNeurology, University of Iowa College of Medicine

AndAndBanner Alzheimer Institute, PhoenixBanner Alzheimer Institute, Phoenix

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Slide 2 PurposePurpose

To highlight the clinical differences between To highlight the clinical differences between AlzheimerAlzheimer’’s Disease and related disorders in s Disease and related disorders in order to provide the most appropriate care. order to provide the most appropriate care.

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Slide 3 ObjectivesObjectives

1.1. Differentiate between symptoms usually seen in Differentiate between symptoms usually seen in AlzheimerAlzheimer’’s disease and the more common nons disease and the more common non--Alzheimer dementiasAlzheimer dementias2.2. Describe critical differences in medication use Describe critical differences in medication use between Alzheimerbetween Alzheimer’’s disease, frontotemporal dementia s disease, frontotemporal dementia and Lewy body dementiaand Lewy body dementia3.3. Discuss the varying expectations with behavioral Discuss the varying expectations with behavioral management between Alzheimermanagement between Alzheimer’’s disease, s disease, frontotemporal dementia and Lewy body dementiafrontotemporal dementia and Lewy body dementia

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Slide 4

Suddenly you realizeSuddenly you realize……

Mr. Jones has a dementia but he does not act like other Mr. Jones has a dementia but he does not act like other people with the diagnosis of Alzheimerpeople with the diagnosis of Alzheimer’’s diseases disease……..

He makes repeated suggestive comments to the staff and tries He makes repeated suggestive comments to the staff and tries to fondle them repeatedlyto fondle them repeatedlyHe is obsessed with getting to chapel and He is obsessed with getting to chapel and ““General HospitalGeneral Hospital””becoming loud and aggressive if he misses either.becoming loud and aggressive if he misses either.He has driven out three room mates in the past yearHe has driven out three room mates in the past yearHis recent memory is good, and he scores 30/30 on the His recent memory is good, and he scores 30/30 on the MMSEMMSEHe is incontinent of stool in his bed each morning but is He is incontinent of stool in his bed each morning but is continent the rest of the daycontinent the rest of the day

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Slide 5 And then there isAnd then there is……..

Mr. Smith who seems normal or slightly Mr. Smith who seems normal or slightly forgetful much of the time, but thenforgetful much of the time, but then……

For days or weeks will see animals (typically cats) in For days or weeks will see animals (typically cats) in his room or under the dining room tableshis room or under the dining room tablesCan fly off the handle for no apparent reason Can fly off the handle for no apparent reason accusing others of stealingaccusing others of stealingHas begun to develop Has begun to develop ““ParkinsonParkinson’’s diseases disease””

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Slide 6

Are these Are these ““typicaltypical”” presentations presentations of Alzheimerof Alzheimer’’s disease, and if not s disease, and if not

why do we care?why do we care?

Simply, because expectations and Simply, because expectations and treatment are differenttreatment are different

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Slide 7 Three critical questions posed during Three critical questions posed during

the diagnostic process:the diagnostic process:

1. Is memory loss present?1. Is memory loss present?

2. What could be causing it?2. What could be causing it?

3. Are the symptoms and course of the disease 3. Are the symptoms and course of the disease consistent with what we know as Alzheimerconsistent with what we know as Alzheimer’’s s disease?disease?

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Slide 8

Is memory loss present?Is memory loss present?

History from patient and familyHistory from patient and familyChanges in memory and function from previous Changes in memory and function from previous abilitiesabilitiesChanges in behavior patternsChanges in behavior patternsHistory of mental health problems/substance History of mental health problems/substance use/OTC and prescribed medicationsuse/OTC and prescribed medicationsOther symptomsOther symptomsMedical historyMedical historySocial historySocial history

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Slide 9 Is memory loss present (cont)?Is memory loss present (cont)?

Onset and duration of the symptomsOnset and duration of the symptomsWaxing and waning of symptomsWaxing and waning of symptoms

Mental status testsMental status testsMiniMini--Mental Status ExaminationMental Status ExaminationClock DrawingClock DrawingFigure copyingFigure copying

Observation of behavior and interactionObservation of behavior and interaction

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Slide 10 What could be causing the memory loss?What could be causing the memory loss?

The goal is to rule out all other causesThe goal is to rule out all other causesHistory & thorough physical examination to rule out History & thorough physical examination to rule out deliriumdeliriumImaging Imaging -- should be negativeshould be negative

Rule out tumor, strokes, trauma, NPHRule out tumor, strokes, trauma, NPHMay see areas of localized atrophyMay see areas of localized atrophyCan be CT scan, MRI, PETCan be CT scan, MRI, PET

Neuropsychological testingNeuropsychological testingReconfirm memory lossReconfirm memory lossDefines areas of weakness and therefore areas of brain affectedDefines areas of weakness and therefore areas of brain affectedBegins the care planBegins the care plan

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Slide 11 What could be causing the memory loss What could be causing the memory loss

(cont) ?(cont) ?

Laboratory evaluationLaboratory evaluationCBC CBC -- anemia and blood dyscrasiasanemia and blood dyscrasiasTSH TSH -- hypothyroidhypothyroidElectrolytes Electrolytes -- imbalances, renal disease, imbalances, renal disease, dyhydrationdyhydrationBlood sugar Blood sugar -- diabetesdiabetesB12 & Folate B12 & Folate -- B12 deficiencyB12 deficiencyUrinalysis Urinalysis -- infection, signs of renal diseaseinfection, signs of renal diseaseHIV, STD testingHIV, STD testing

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Slide 12 What could be causing the memory loss What could be causing the memory loss

(cont) ?(cont) ?

Other tests as indicatedOther tests as indicatedLumbar puncture Lumbar puncture -- Tumor, infection, NPHTumor, infection, NPHEEG EEG -- SeizuresSeizuresChest XChest X--ray ray -- TumorTumorCardiogram, Holter monitor Cardiogram, Holter monitor -- arrhythmiaarrhythmiaEMG EMG -- ALSALSOvernight oxymetry Overnight oxymetry -- sleep apneasleep apneaSleep studies Sleep studies -- restless legsrestless legsArterial biopsy Arterial biopsy -- arteritisarteritis

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Slide 13

All of the diagnostic data is All of the diagnostic data is compiled and interpreted to compiled and interpreted to answer the last questionanswer the last question……..

This is the part of the evaluation that This is the part of the evaluation that may be missingmay be missing

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Slide 14 Are the test results and pattern of Are the test results and pattern of symptoms consistent with what symptoms consistent with what

we know about Alzheimerwe know about Alzheimer’’s s disease?disease?

The history and neuropsychological tests will The history and neuropsychological tests will reflect losses in cognition.reflect losses in cognition.Imaging studies and laboratory tests will be Imaging studies and laboratory tests will be negative.negative.The symptoms and behavioral presentation will The symptoms and behavioral presentation will be consistent with ADbe consistent with AD

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Slide 15 So, what is consistent with AD?So, what is consistent with AD?

Slow onset, insidious progressionSlow onset, insidious progressionGlobal losses in cognition, planning, language, memory, and visuGlobal losses in cognition, planning, language, memory, and visualal--spatial spatial perceptionperceptionChanges in shortChanges in short--term auditory and/or visual memoryterm auditory and/or visual memorySubtle intensifying of negative personality characteristicsSubtle intensifying of negative personality characteristicsDecreased ability to inhibit plus increased selfDecreased ability to inhibit plus increased self--absorptionabsorptionDecreased tolerance for noise, crowds, changeDecreased tolerance for noise, crowds, changeIncreased symptoms with fatigueIncreased symptoms with fatigueUneven symptoms presentationUneven symptoms presentationEpisodes of depressionEpisodes of depressionGradual loss of functional abilitiesGradual loss of functional abilities

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Slide 16 And you suspect other diseases if you see?And you suspect other diseases if you see?

Severe disinhibition Severe disinhibition Changes in motor function (tremor, unsteady gait, spasticity, Changes in motor function (tremor, unsteady gait, spasticity, bradykinesia)bradykinesia)Rapid onset (< 1 year)Rapid onset (< 1 year)EarlyEarly loss of language skills, continence, and ambulationloss of language skills, continence, and ambulationLoss of visionLoss of visionEarly loss of speech or fluencyEarly loss of speech or fluencyApathyApathyPsychosisPsychosisLoss of coordination (motor apraxias) early in the illnessLoss of coordination (motor apraxias) early in the illnessAny focal signAny focal signUneven disease progression or spellsUneven disease progression or spellsMuscle wastingMuscle wasting

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Slide 17 So, if you know so much, why does it So, if you know so much, why does it

sometimes take years to diagnose?sometimes take years to diagnose?

Vague presenting symptomsVague presenting symptomsEarly in disease trajectoryEarly in disease trajectoryMixed presentations, especially in VA populationMixed presentations, especially in VA populationAtypical symptom presentationsAtypical symptom presentationsMany coMany co--morbidities presentmorbidities presentPatient/family covers losses or does not agree with Patient/family covers losses or does not agree with diagnosisdiagnosisLimited clinical skill and refusal to consult with Limited clinical skill and refusal to consult with specialistsspecialistsFamily conflictFamily conflict

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Slide 18 A full 70% or people with dementia A full 70% or people with dementia

are never diagnosed!are never diagnosed!ButBut……..

Once Once ““AlzheimerAlzheimer’’s diseases disease”” is on the chart, it stays is on the chart, it stays there forever whether a diagnostic evaluation was there forever whether a diagnostic evaluation was completed or not completed or not Many dementias begin looking like AD and slowly Many dementias begin looking like AD and slowly morph into a related disorder over a period of morph into a related disorder over a period of several yearsseveral years

LBDLBD

FTDFTD

FLS FLS ALSALS

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Slide 19 Atypical DementiasAtypical Dementias

44--6 million Americans have dementing illnesses6 million Americans have dementing illnessesDiagnosis often nonDiagnosis often non--specific: reversible versus specific: reversible versus irreversible (effects of managed care) irreversible (effects of managed care) Atypical presentations may affect as many as 20% to Atypical presentations may affect as many as 20% to 30% ( 1 to 2 million)30% ( 1 to 2 million)Care providers recognize people for whom standard Care providers recognize people for whom standard care plans are not effectivecare plans are not effectiveCare plan must differ with atypical presentationCare plan must differ with atypical presentation

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Slide 20

We have had a We have had a ““one size fits allone size fits all””care plan with minimal care plan with minimal

opportunities for opportunities for individualizing......individualizing......

This meant about 20% to 30% of This meant about 20% to 30% of people with dementia did not benefit people with dementia did not benefit

from the standard of carefrom the standard of care

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Slide 21

The move towards social models of The move towards social models of care may discourage examination care may discourage examination

of atypical presentations.of atypical presentations.

On first glance it may appear to move On first glance it may appear to move care back to the care back to the ““medical modelmedical model..””

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Slide 22 Atypical DementiasAtypical Dementias

Asymmetric cortical degenerative syndromesAsymmetric cortical degenerative syndromesProgressive Aphasia Progressive Aphasia PerceptualPerceptual--motor syndromesmotor syndromesProgressive motor syndromesProgressive motor syndromesProgressive frontal lobe syndromesProgressive frontal lobe syndromesBitemporal syndromesBitemporal syndromes

Other syndromesOther syndromesDiffuse Lewy Body VariantDiffuse Lewy Body Variant

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Slide 23

LetLet’’s start with frontal s start with frontal lobe syndromeslobe syndromes

They are often the most puzzling and They are often the most puzzling and vexingvexing

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Slide 24 Case StudyCase Study

John Smith was a 64 year old factory manager who had a two year John Smith was a 64 year old factory manager who had a two year history of progressive personality change. Married, he had threhistory of progressive personality change. Married, he had three e grown children, owned his own home, and had saved about grown children, owned his own home, and had saved about $700,000 in assets.$700,000 in assets.

Mr. Smith became obsessed with PublisherMr. Smith became obsessed with Publisher’’s Clearing House s Clearing House (PCH). He spent $600.000 of his savings on the sweepstakes, (PCH). He spent $600.000 of his savings on the sweepstakes, saying that he had seen the PCH van in the neighborhood and all saying that he had seen the PCH van in the neighborhood and all he had to do is choose the color of the Jaguar prize. He had no he had to do is choose the color of the Jaguar prize. He had no insight or ability to reason.insight or ability to reason.

Mr. SmithMr. Smith’’s family was frantic and feared they will lose their homes family was frantic and feared they will lose their homeAt that time Mr. SmithAt that time Mr. Smith’’s MMSE was 30. His neuropsychological s MMSE was 30. His neuropsychological

testing indicated very mild impairment. He was fully independenttesting indicated very mild impairment. He was fully independentin all IADLs and ADLs. In pursuing legal options, Mr. Smith in all IADLs and ADLs. In pursuing legal options, Mr. Smith was judged competent based on the objective medical findings. was judged competent based on the objective medical findings. His continued to spend and the family lost everything. His continued to spend and the family lost everything.

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Slide 25 Progressive frontal lobe Progressive frontal lobe

syndromessyndromesFTD, (preciously aka PickFTD, (preciously aka Pick’’s)s)

Bilateral frontalBilateral frontal--temporal lobe damage, one side worsetemporal lobe damage, one side worse

Dementia, frontal lobe type: Frontal lobe Dementia, frontal lobe type: Frontal lobe degeneration, Frontal Lobe Syndrome (FLS)degeneration, Frontal Lobe Syndrome (FLS)

bilateral frontal lobe damage, usually bilateral frontal lobe damage, usually asymetricasymetricMay develop impaired motor control with spasticity and/or May develop impaired motor control with spasticity and/or impaired languageimpaired languageMay precede development of motor neuron disease May precede development of motor neuron disease

Symptoms vary enormously depending on Symptoms vary enormously depending on predominant side of damage and dominancepredominant side of damage and dominance

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Slide 26 Comparing Symptoms of FTD & AD Comparing Symptoms of FTD & AD

ADADInhibiting impulsesInhibiting impulsesInitiating activityInitiating activityReasoning & judgingReasoning & judgingLoss of time senseLoss of time senseProblems with abstractions Problems with abstractions Tolerating stressTolerating stressSome disinhibitionSome disinhibitionUnderstanding cause & effectUnderstanding cause & effectIncreased selfIncreased self--absorptionabsorptionDepressionDepression

FTDFTDLoss of insightLoss of insightCapacity for empathyCapacity for empathyAbility to initiate activity, Ability to initiate activity, apathyapathyDecreased interpersonal skillsDecreased interpersonal skillsObsessionsObsessionsSelfSelf--absorptionabsorptionConsistently poor judgmentConsistently poor judgmentSevere disinhibitionSevere disinhibitionUnderstand cause & effect Understand cause & effect but canbut can’’t act ont act on

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Slide 27 Whenever a youngWhenever a young--onset dementia is onset dementia is detected there is a high probability of detected there is a high probability of

FTDFTD

-- Patients tend to be youngerPatients tend to be younger

-- Often womenOften women

-- 60% probability of familial or inherited 60% probability of familial or inherited

-- Rare FTPDRare FTPD--17 syndrome17 syndrome

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Slide 28

The person with frontal and The person with frontal and frontotemporal lobe syndromes do frontotemporal lobe syndromes do

not progress as outlined by the not progress as outlined by the Global Deterioration Scale, thus Global Deterioration Scale, thus behavioral expectations are more behavioral expectations are more

difficult and ethical considerations difficult and ethical considerations vary from people with AD. vary from people with AD.

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Slide 29

Frontal lobe syndromesFrontal lobe syndromes

Limited research describing personality changesLimited research describing personality changesVariation in symptoms Variation in symptoms Limited number of people available to study, Limited number of people available to study, samples often small (4samples often small (4--28)28)

FTD is often difficult to differentiate from AD FTD is often difficult to differentiate from AD based on behavioral symptoms, yet is accurately based on behavioral symptoms, yet is accurately assessed with neuropsychiatric inventories assessed with neuropsychiatric inventories measuring measuring ↑↑ disinhibition, disinhibition, ↑↑ apathy, and apathy, and ↓↓depressiondepression (Levy, Miller, Cummings, Fairbanks & Craig, 1997; (Levy, Miller, Cummings, Fairbanks & Craig, 1997; Passant, Passant, ElfgrenElfgren, , EnglundEnglund, & , & GustavsonGustavson, 2005), 2005)

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Slide 30 Predominant FeaturesPredominant Features

Dominant lobe atrophy produces semantic and Dominant lobe atrophy produces semantic and perceptual problems leaving emotion intact.perceptual problems leaving emotion intact.NonNon--dominant lobe atrophy produced impaired dominant lobe atrophy produced impaired recognition of emotion recognition of emotion

Loss of empathyLoss of empathyImpaired interpersonal skillsImpaired interpersonal skillsFixation of facial expression Fixation of facial expression (Perry, Rosen, Kramer, Beer, (Perry, Rosen, Kramer, Beer, LevensonLevenson, & Miller, 2001), & Miller, 2001)

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Slide 31 Loss of EmpathyLoss of Empathy

Artists with FTD were able to identify facial Artists with FTD were able to identify facial emotion and animate versus inanimate objects, emotion and animate versus inanimate objects, they were no longer able to recreate emotion in they were no longer able to recreate emotion in faces they drewfaces they drew

Faces were distorted, skeletonFaces were distorted, skeleton--like, menacing, or like, menacing, or alien alien (Mendez & Perryman, 2003)(Mendez & Perryman, 2003)

Yet people with nonYet people with non--dominant FTD were more dominant FTD were more likely to identify distorted faces as likely to identify distorted faces as ““humanhuman”” than than those with dominant side lesions. those with dominant side lesions. (Mendez & Lim, (Mendez & Lim, 2004)2004)

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Slide 32

Progression of SymptomsProgression of Symptoms

People with AD have behavioral symptoms that People with AD have behavioral symptoms that worsen with progression worsen with progression One study reported people with FTD have One study reported people with FTD have initial severe behavioral problems that may initial severe behavioral problems that may remain stable or even improve with disease remain stable or even improve with disease progression (3 years) progression (3 years)

The study was compromised by high attrition, The study was compromised by high attrition, refusal rate, disinhibition, and heterogeneity in lesion refusal rate, disinhibition, and heterogeneity in lesion progression. progression. ((LavenuLavenu & & PasquierPasquier, 2005), 2005)

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Slide 33 Predominant CharacteristicsPredominant Characteristics

Loss of insightLoss of insight is a core diagnostic criterionis a core diagnostic criterionPeople with FTD show more problems with People with FTD show more problems with dominance, submissiveness, colddominance, submissiveness, cold--heartedness, heartedness, introversion & ingeniousnessintroversion & ingeniousnessFTD tends to exaggerate positive personality FTD tends to exaggerate positive personality qualities and minimize negativequalities and minimize negativeWere unable to update selfWere unable to update self--image after disease onset. image after disease onset. (Rankin, Baldwin, Pace(Rankin, Baldwin, Pace--SavitskySavitsky, Kramer, & Miller, 2005), Kramer, & Miller, 2005)

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Slide 34 Frontal lobe syndromes Frontal lobe syndromes

Neuropsychiatric syndromes: Neuropsychiatric syndromes: Abulia: Functional errors of omissionAbulia: Functional errors of omissionPerseveration/fixation on specific activitiesPerseveration/fixation on specific activitiesDisinhibitionDisinhibitionObsessionsObsessionsFlat affect, yet labileFlat affect, yet labileInertia, appears depressedInertia, appears depressedMemory & language deficits but may perform normally on Memory & language deficits but may perform normally on neuropsychological tests neuropsychological tests No insight, disinhibited, poor judgment, loss of executive No insight, disinhibited, poor judgment, loss of executive functionfunction

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Slide 35 Do people with FTD become Do people with FTD become

sociopaths?sociopaths?While people with FTD retain the objective knowledge to make While people with FTD retain the objective knowledge to make impersonal moral judgments, they are less able to make impersonal moral judgments, they are less able to make immediate, emotionallyimmediate, emotionally--based judgments based judgments (Mendez, Anderson, & (Mendez, Anderson, & ShapiraShapira, 2005), 2005)

Comparing of people with FTD versus AD, 57% of people with Comparing of people with FTD versus AD, 57% of people with FTD demonstrated sociopathic behavior vs. 7% with AD.FTD demonstrated sociopathic behavior vs. 7% with AD.

Sociopathic acts = unsolicited sexual acts, traffic violations, Sociopathic acts = unsolicited sexual acts, traffic violations, physical physical assaults, & other unacceptable behaviorsassaults, & other unacceptable behaviorsPatients knew they were wrong but were helpless to inhibit themPatients knew they were wrong but were helpless to inhibit themClaimed remorse but could not act on it or show concern for Claimed remorse but could not act on it or show concern for consequencesconsequencesCombination of loss of empathy and disinhibitionCombination of loss of empathy and disinhibitionDoes not meet legal criteria for insanity defense. (Mendez, ChenDoes not meet legal criteria for insanity defense. (Mendez, Chen, , ShapiraShapira& Miller, 2005.& Miller, 2005.

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Slide 36 For the person with FLS/FTD the For the person with FLS/FTD the

problem is worse than ADproblem is worse than ADThe lack of impulse control is most often manifested in The lack of impulse control is most often manifested in

Compulsive spending and exploitation without awareness of Compulsive spending and exploitation without awareness of consequencesconsequencesBizarre drivingBizarre drivingDangerous around household equipment, guns, toolsDangerous around household equipment, guns, toolsInappropriate interactions with other adults and childrenInappropriate interactions with other adults and children

The person lacks any insightThe person lacks any insightFor the person with FLS/FTD the screens are often For the person with FLS/FTD the screens are often normalnormalHow does a family member save the estate, or limit How does a family member save the estate, or limit behavior when the patient refuses?behavior when the patient refuses?

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Slide 37 For the person with FLS/FTD the For the person with FLS/FTD the

problem is worse than ADproblem is worse than AD

There are no legal options for preventing There are no legal options for preventing catastrophes as there is no objective data to catastrophes as there is no objective data to determine competency.determine competency.At this point the family is unable to At this point the family is unable to communicate privately with the physician, communicate privately with the physician, especially with emphasis of HIPAAespecially with emphasis of HIPAA

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Slide 38

We expect people with ADWe expect people with AD--type dementias to type dementias to voluntarily relinquish activities synonymous with voluntarily relinquish activities synonymous with

autonomy as they need to, yet due to lack of autonomy as they need to, yet due to lack of insight the person with FTD/FLS in the noninsight the person with FTD/FLS in the non--

dominant lobe is not likely to agreedominant lobe is not likely to agree

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Slide 39 Case StudyCase Study

CathyrnCathyrn Beech is a 45 year old veteran with a one year history of behaBeech is a 45 year old veteran with a one year history of behavioral vioral change. She was widowed at a young age, raised two children alochange. She was widowed at a young age, raised two children alone, and ne, and started her own multinational corporation.started her own multinational corporation.

Ms. Beech has become obsessed with sales and was recently stoppeMs. Beech has become obsessed with sales and was recently stopped by the d by the police for driving 75 mph and crossing the center line to pass spolice for driving 75 mph and crossing the center line to pass slower traffic lower traffic on the main city street. She explained that there was a sale aton the main city street. She explained that there was a sale at the mall and she the mall and she wanted to get there by 5. The police confiscated her license andwanted to get there by 5. The police confiscated her license and took her to took her to her daughter who drive her home. Ms. Beech promised not to drivher daughter who drive her home. Ms. Beech promised not to drive again.e again.

Two weeks later Ms. Beech was again arrested for unsafe driving.Two weeks later Ms. Beech was again arrested for unsafe driving. She decided a She decided a woman in the car ahead of her took too long to get through an inwoman in the car ahead of her took too long to get through an intersection. tersection. Ms. Beech drove forward pushing the car in front of her into a Ms. Beech drove forward pushing the car in front of her into a funeral funeral procession and a policeman. In front of the policeman Ms. Beech procession and a policeman. In front of the policeman Ms. Beech offered the offered the driver $200 at the site for the damage to her car in order to adriver $200 at the site for the damage to her car in order to avoid having to void having to tell her daughter.tell her daughter.

While Ms. Beech verbalizes she is no longer able to drive, she rWhile Ms. Beech verbalizes she is no longer able to drive, she repeatedly epeatedly continues to try.continues to try.

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Slide 40 Gaining Consent in People with Gaining Consent in People with

FTDFTD……..Early in the disease patients have little insight resisting Early in the disease patients have little insight resisting change and disclosure, thus gaining consent is a change and disclosure, thus gaining consent is a challengechallenge

Diagnosis and sharing medical informationDiagnosis and sharing medical informationDriving and money managementDriving and money management

The family is expected to plan and oversee care, yet has The family is expected to plan and oversee care, yet has no access to medical and financial informationno access to medical and financial information

Attempts to limit autonomy are met with resistance from Attempts to limit autonomy are met with resistance from patient, other family members, and society.patient, other family members, and society.

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Slide 41 The Dark SideThe Dark Side……

When working with people with FLS, new symptoms When working with people with FLS, new symptoms are often vague and may seem to have plausible are often vague and may seem to have plausible explanationsexplanationsExperienced providers working with people with Experienced providers working with people with dementia maintain a high degree of suspicion with dementia maintain a high degree of suspicion with familiesfamilies

Potential for exploitationPotential for exploitationMisuse of decisionMisuse of decision--making powers (taking inheritance early)making powers (taking inheritance early)Denial of critical risksDenial of critical risks

Most state laws for dependent adult abuse do not cover Most state laws for dependent adult abuse do not cover these issues these issues

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Slide 42 Later stage FLS/FTDLater stage FLS/FTD

The personality and behaviors become more like the The personality and behaviors become more like the nonnon--dominant lobe dysfunctiondominant lobe dysfunctionIssues of long term placement includeIssues of long term placement include

AbuliaAbuliaHyperoralityHyperorality, including Pica and eating excrement, including Pica and eating excrementSexual aggressionSexual aggressionSpontaneous vocalizations that do not respond readily to Spontaneous vocalizations that do not respond readily to medicationsmedicationsSevere agitation without patterns or environmental cuesSevere agitation without patterns or environmental cuesAggressive actions towards other residentsAggressive actions towards other residentsBulbar signs with dysphagia and aspirationBulbar signs with dysphagia and aspiration

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Slide 43 There are no places designed for There are no places designed for providing care to people with FLS/FTDproviding care to people with FLS/FTD

Nursing home versus inNursing home versus in--home carehome careFewer resources for inFewer resources for in--home carehome care

Will the offspring endanger their future financial Will the offspring endanger their future financial security to care for a parent?security to care for a parent?Patient is usually younger than people in Patient is usually younger than people in NHsNHs..

Family conflict Family conflict Fear of stigma Fear of stigma Fear of disease: not wanting to see parent this wayFear of disease: not wanting to see parent this wayUse of resourcesUse of resourcesToll of caregiving on entire familyToll of caregiving on entire familyGenetic testingGenetic testing

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Slide 44 Long Term Care IssuesLong Term Care Issues

The rights of the individual versus the rights of The rights of the individual versus the rights of the aggregate communitythe aggregate communityThe right to assume resident risk versus staff The right to assume resident risk versus staff responsibility to protectresponsibility to protectStaff rights to a safe working environmentStaff rights to a safe working environmentWho Who ““ownsowns”” the resident, staff or family?the resident, staff or family?To feed via tube or notTo feed via tube or not……

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Slide 45 Medications and frontal lobe Medications and frontal lobe syndromessyndromes

Do not respond to cholinesterase inhibitorsDo not respond to cholinesterase inhibitorsSome people with FTD may respond for a while, but as a Some people with FTD may respond for a while, but as a general rule they tend to increase agitationgeneral rule they tend to increase agitation

Tend to develop paradoxical reactions and increased Tend to develop paradoxical reactions and increased disinhibition with disinhibition with benzodiazapinesbenzodiazapinesMay try May try depakotedepakote or other or other antiseizureantiseizure medication to medication to treat obsessionstreat obsessionsSSRISSRI’’ss (especially (especially citalopramcitalopram HBrHBr) for ) for hypersexualityhypersexuality

Estrogen does not workEstrogen does not workUTIs common due to poor hygieneUTIs common due to poor hygiene

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Slide 46 Diffuse Lewy Body DiseaseDiffuse Lewy Body Disease

Neocortex, cingulate cortexNeocortex, cingulate cortexEarly symptoms look like either MCI or mild Early symptoms look like either MCI or mild AD with day to day fluctuations in mental stateAD with day to day fluctuations in mental state

May Have prolonged periods of lucidityMay Have prolonged periods of lucidity

Early symptoms may have occasional illusions or Early symptoms may have occasional illusions or mild paranoid ideas that fluctuatemild paranoid ideas that fluctuate

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Slide 47 A few years into the diseaseA few years into the disease……

The patient will develop:The patient will develop:Psychosis: Psychosis:

hallucinations, one study suggests seeing cats most hallucinations, one study suggests seeing cats most common, but may be people in the house or outsidecommon, but may be people in the house or outsideparanoid ideasparanoid ideaspsychosis may be threatening or notpsychosis may be threatening or notif not prevented the psychosis may pose significant risk to if not prevented the psychosis may pose significant risk to caregivers caregivers

Generalized dementia followed by rigid Generalized dementia followed by rigid bradykineticbradykineticParkinsonismParkinsonism

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Slide 48 The earlier diagnosis must be reThe earlier diagnosis must be re--

evaluated and upevaluated and up--dated dated

These people may be misdiagnosed as These people may be misdiagnosed as ParaphreniaParaphrenia –– Late onset schizophreniaLate onset schizophrenia

Or they may have Or they may have asimultanagnosiaasimultanagnosiaParietoParieto--occipital; bilateral dysfunction of dorsal occipital; bilateral dysfunction of dorsal cortical visual pathwayscortical visual pathwaysNo integration of components into a coherent wholeNo integration of components into a coherent wholeOcular Ocular apraxiaapraxia; right; right--left disorientation, mild left disorientation, mild language deficitslanguage deficits

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Slide 49

Medications and LBDMedications and LBD

Excellent response to cholinesterase inhibitorsExcellent response to cholinesterase inhibitorsStudies suggest cholinesterase inhibitors will prevent or minimiStudies suggest cholinesterase inhibitors will prevent or minimize ze behavioral problems and psychosis, thus taken as long as the patbehavioral problems and psychosis, thus taken as long as the patient can ient can swallowswallow

Worth trying patch?Worth trying patch?

MemantineMemantine may also helpmay also helpAbout 5% respond to dopamine BUT significantly increase risk About 5% respond to dopamine BUT significantly increase risk of aggressive psychosisof aggressive psychosisExquisitely sensitive to antipsychoticsExquisitely sensitive to antipsychotics

High risk for EPS, High risk for EPS, anticholiergicanticholiergic sideside--effects, and NMSeffects, and NMSFor aggression try For aggression try mertazapinemertazapine, then , then quietapinequietapineStart with lowest possible doses and titrate up slowly and D/C iStart with lowest possible doses and titrate up slowly and D/C if sidef side--effectseffects

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Slide 50

NonNon--Pharmacologic MeasuresPharmacologic Measures

Evaluate & correct eyesightEvaluate & correct eyesightLow stimulusLow stimulusExercise and metered activity participationExercise and metered activity participationInjury prevention, physical therapy for fall preventionInjury prevention, physical therapy for fall preventionRapid interdisciplinary response to behavioral issues Rapid interdisciplinary response to behavioral issues Psychiatric followPsychiatric follow--up for management of complex up for management of complex regimensregimensSkin care for droolingSkin care for droolingSwallowing study if dysphagia developsSwallowing study if dysphagia developsStaff/family educationStaff/family education

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Slide 51 ConclusionsConclusions

Once you have seen one person with FLS/FTD and DLB you Once you have seen one person with FLS/FTD and DLB you have seen one person with FLS/FTD and DLBhave seen one person with FLS/FTD and DLBPeople with nonPeople with non--dominant lobe FTD tend to become antisocial, dominant lobe FTD tend to become antisocial, yet are often judged to be yet are often judged to be ““normalnormal”” well into the disease.well into the disease.This poses enormous legal and ethical issues which compound as This poses enormous legal and ethical issues which compound as the disease progressesthe disease progressesPeople with LBD are often first diagnosed as having AD and People with LBD are often first diagnosed as having AD and slowly slowly ““morphmorph”” into the LBD symptoms into the LBD symptoms People with LBD are exquisitely sensitive to medications and People with LBD are exquisitely sensitive to medications and require careful ongoing monitoringrequire careful ongoing monitoringMore research and aggressive professional advocacy is needed to More research and aggressive professional advocacy is needed to assure these patients receive appropriate care and interventionsassure these patients receive appropriate care and interventions..

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NON-PHARMACOLOGICAL MANAGEMENT OF BEHAVIORS IN NON ... Spring 5 Hall.pdf · Has begun to develop “Parkinson’s disease ... Changes in motor function ... Atypical symptom presentations

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