Dementia Beyond Drugs:Dementia Beyond Drugs:Changing the Culture of CareChanging the Culture of Care

G. Allen Power, MD, FACPG. Allen Power, MD, FACPSt. John’s Home Rochester, NY, USASt. John’s Home Rochester, NY, USAColorado Culture Change Coalition Colorado Culture Change Coalition

September 24September 24thth, 2010, 2010

OverviewOverview Objective: Objective: To change your minds about people whose To change your minds about people whose

minds have changedminds have changed

Adult Learning Methods: Adult Learning Methods: Provocation and shameless Provocation and shameless book promotionbook promotion

Pharmaceutical support: Pharmaceutical support: Yeah, right! Yeah, right!

APA certified: APA certified: Good for brain healthGood for brain health

OutlineOutline Demographics and drug prescribing patternsDemographics and drug prescribing patterns Drug studies revisitedDrug studies revisited Paradigm-shifting exercisesParadigm-shifting exercises Introduce the “experiential” model and compare with Introduce the “experiential” model and compare with

biomedical modelbiomedical model The “culture change” componentThe “culture change” component ““True stories”True stories” Practical interpersonal approachesPractical interpersonal approaches Specific scenariosSpecific scenarios Conclusions, Q&AConclusions, Q&A

PerspectivesPerspectives

““The only true voyage of discovery . . .would be The only true voyage of discovery . . .would be not to visit strange lands, but to possess other not to visit strange lands, but to possess other eyes, to behold the universe through the eyes eyes, to behold the universe through the eyes of another, of a hundred others, to behold the of another, of a hundred others, to behold the hundred universes that each of them beholds, hundred universes that each of them beholds, that each of them is . . .” that each of them is . . .” - Marcel Proust - Marcel Proust

What’s Wrong…What’s Wrong… Our current model is inadequate…Our current model is inadequate…

What’s Wrong…What’s Wrong… ……and potentially dangerous.and potentially dangerous.

Foundations for a New ParadigmFoundations for a New Paradigm

• Personhood remains intact• Interpersonal environment has

striking effects on a person with dementia

• Potential for growth (rementing)

Professor Tom Kitwood Founder of Person Centred Care

Foundations for a New ParadigmFoundations for a New Paradigm

•Rejects institutional model of elder care

•Elderhood as a developmental stage

•Transformation of long-term care has personal, operational and physical components

Dr William ThomasFounder of the Eden Alternative

ManyMany Voices…. Voices….

Dementia StatisticsDementia Statistics Over 5 million US adults live with dementiaOver 5 million US adults live with dementia In 2050, est. 16 million In 2050, est. 16 million (~100 million worldwide)(~100 million worldwide) Prevalence : 6-8% over 65 Prevalence : 6-8% over 65

30% over 8530% over 85 4% of adults >65 reside in nursing homes 4% of adults >65 reside in nursing homes Dementia in 50-80% of people in nursing homesDementia in 50-80% of people in nursing homes 5th leading cause of death in people >655th leading cause of death in people >65

Nursing Home SurveyNursing Home SurveyMDS 2006MDS 2006

40% elders in US NHs – 8 states40% elders in US NHs – 8 states 27.6% of 27.6% of allall people received antipsychotic in past 7 people received antipsychotic in past 7

days, including:days, including: 51.2% of those with “aggressive behavioral 51.2% of those with “aggressive behavioral

symptoms”symptoms” 39.5% of those with “non-aggressive symptoms”39.5% of those with “non-aggressive symptoms” 22.6% of those scored as “dementia w/o symptoms”22.6% of those scored as “dementia w/o symptoms” Overall 7.4% increase from 1999Overall 7.4% increase from 1999

Briesacher BA, et al. (2005)

Survey of 2.5 million Medicare recipients, who spent time in US nursing homes from 2000-2001

27.6% (693,000) were prescribed an antipsychotic(up from 16% in 1995)

Only 42% received meds in accordance with NH prescribing guidelines

23% (159,000) had no appropriate indication

17% (118,000) exceeded recommended doses

Antipsychotic PrescriptionsAntipsychotic Prescriptions US sales, (2000US sales, (20002005):2005): $5.4 billion$5.4 billion$10.5 billion (>$17 billion in 2008)$10.5 billion (>$17 billion in 2008) Prescriptions, (2000Prescriptions, (20002005):2005): 29.9 million29.9 million43.8 million43.8 million (~2.1 million Americans had schizophrenia)(~2.1 million Americans had schizophrenia) ~40~40 new antipsychotic drugs in development new antipsychotic drugs in development Prevalence of use in nursing homes similar in most Prevalence of use in nursing homes similar in most

industrialized nations (about industrialized nations (about 40%40% of people with of people with dementia)*dementia)*

*Margallo-Lana, et al. (2001). J. Ger. Psych. 16(1):39-44*Margallo-Lana, et al. (2001). J. Ger. Psych. 16(1):39-44

Behavioral Expressions in DementiaBehavioral Expressions in DementiaDo Drugs Work?Do Drugs Work?

Studies show that, at best, fewer than 1 in 5 people Studies show that, at best, fewer than 1 in 5 people show improvement show improvement

Karlawish, J (2006). NEJM 355(15), 1604-1606.Karlawish, J (2006). NEJM 355(15), 1604-1606. Virtually all positive studies have been sponsored by Virtually all positive studies have been sponsored by

the companies making the pillsthe companies making the pills Many flaws in published studiesMany flaws in published studies Two recent independent studies showed little or no Two recent independent studies showed little or no

benefitbenefit Sink et al. (2005), JAMA 293(5): 596-608; Schneider et al. (2006), NEJM 355(15): 1525-1538.Sink et al. (2005), JAMA 293(5): 596-608; Schneider et al. (2006), NEJM 355(15): 1525-1538.

Risks of antipsychotic drugsRisks of antipsychotic drugs Sedation, lethargySedation, lethargy Gait disturbance, fallsGait disturbance, falls Rigidity and other movement disordersRigidity and other movement disorders Constipation, poor intakeConstipation, poor intake Weight gainWeight gain Elevated blood sugarElevated blood sugar Increased risk of pneumoniaIncreased risk of pneumonia Increased risk of strokeIncreased risk of stroke Ballard et al. (2009): Ballard et al. (2009): Double Double mortality rate (at least mortality rate (at least

three U.S. studies show increased mortality as well) three U.S. studies show increased mortality as well) Lancet Neurology 8(2): 152-157Lancet Neurology 8(2): 152-157

Food for ThoughtFood for Thought

Does dementia cause:Does dementia cause: - wandering?- wandering? - calling out?- calling out? - crying?- crying? - aggression?- aggression?

If someone If someone withoutwithout dementia did any of these, how dementia did any of these, how would we respond?would we respond?

Food for Thought - 2Food for Thought - 2 Studies have shown that the vast majority of Studies have shown that the vast majority of

behavioral expressions can be linked to behavioral expressions can be linked to unmet unmet needs or environmental triggersneeds or environmental triggers..

Is there any pill that can satisfy unmet needs?Is there any pill that can satisfy unmet needs? If there were a pill that made all behavioral If there were a pill that made all behavioral

expressions disappear without any side effects,expressions disappear without any side effects, should we use it?should we use it?

Food for Thought - 3Food for Thought - 3 Who is in worse shape?Who is in worse shape?

A person with dementia who calls out, wanders, or A person with dementia who calls out, wanders, or resists personal care, resists personal care,

oror

A person with dementia who is always quiet and A person with dementia who is always quiet and disengaged, and lets staff do everything for them?disengaged, and lets staff do everything for them?

Food for Thought – 4Food for Thought – 4 How often do you give Tylenol to a person How often do you give Tylenol to a person

with fever and chills, without searching with fever and chills, without searching carefully for the cause?carefully for the cause?

How often do we give medication to people How often do we give medication to people with behavioral expressions without searching with behavioral expressions without searching for the cause?for the cause?

Food for Thought - 5Food for Thought - 5

Who decides when a person needs medication for Who decides when a person needs medication for behavioral expressions:behavioral expressions:

the medical staffthe medical staff

oror

the care staff??the care staff??

Moving Beyond Moving Beyond the the

“Pill Paradigm”“Pill Paradigm”

“ “Other Eyes”:Other Eyes”:The The ExperientialExperiential Model Model

Biomedical Model

Experiential Model

Dementia defined Progressive, irreversible, fatal

Shift in perception of world

Brain function Loss of neurons and cognition

Brain plastic, learning can occur

View of dementia Tragic, costly, burdensome

Continued potential for life and growth

Research goalsAlmost entirely focused on prevention and cure

Also need to improve the lives of those with dementia

Environmental goals Protection, isolation, disempowerment

Maintain well-being and autonomy

Biomedical Model

Experiential Model

Environmental attributes

Disease-specific living areas Programmed activities

Individualized, person- directed careDiverse engagement

Focus of careTasks and treatments Less attention to care environment

RelationshipsCare environment is critical

Staff / family role “Caregiver” “Care partner”

Biomedical Model

Experiential Model

View of behaviorConfused, purposelessDriven by disease and neurochemistry

Attempts to cope, problem-solve and communicate needs

Response to behavior

“Problem” to be “managed”Medication, restraint

Care environment inadequateConform environment to person

Behavioral goals“Normalize” behaviorMeet needs of staff and families

Satisfy unmet needsFocus on individual perspective

Nonpharmacologic approaches

Focus on discrete interventions

Focus on transforming care environment

Overall resultHigh use of medsContinued sufferingDecreased well- being

Rare use of medsAttention to spiritual & emotional needsImproved well-being

Biomedical:Biomedical: “He’s confused, “He’s confused, because he has dementia”because he has dementia”

Experiential:Experiential: “ “I’mI’m confused, confused, because I don’t know what he is because I don’t know what he is

trying to tell me.”trying to tell me.”

Does cough syrup cure Does cough syrup cure pneumonia?pneumonia?

Behavioral expressions Behavioral expressions are the are the symptom, symptom, not thenot the

problem!problem!

Primary Goal:Primary Goal:CreateCreate Well-beingWell-being

Identity Identity GrowthGrowth AutonomyAutonomy SecuritySecurity ConnectednessConnectedness MeaningMeaning JoyJoy “ “Wandering” example…Wandering” example…

ToolkitToolkitfor decoding expressions of needfor decoding expressions of need

Close, continuous relationshipsClose, continuous relationships Knowing people’s storiesKnowing people’s stories Active listeningActive listening Communication skillsCommunication skills Role play, “share the experience”Role play, “share the experience” Flexibility and CreativityFlexibility and Creativity

Transformational Models of CareTransformational Models of Care

Role of the Nurse –Role of the Nurse –Personal TransformationPersonal Transformation

► Model ideal interpersonal approach and communication Model ideal interpersonal approach and communication skillsskills

► Teach a holistic, person-first view of people who live Teach a holistic, person-first view of people who live with dementiawith dementia

► Use person-directed approaches to careUse person-directed approaches to care► Model relationship-based careModel relationship-based care► Model individualized approachesModel individualized approaches► Set up outcomes measurements for improved well-Set up outcomes measurements for improved well-

being, medication reduction, etc.being, medication reduction, etc.

Role of the Nurse-Role of the Nurse-Operational TransformationOperational Transformation

► Change care plans to “I” plansChange care plans to “I” plans► Look at wellness in CCPs, not just illnessLook at wellness in CCPs, not just illness► Empower hands-on staff to respond to elders’ needs “in Empower hands-on staff to respond to elders’ needs “in

the moment”the moment”► Empower elders to direct their care (Empower elders to direct their care (caregivercaregiver vs. vs. care care

partnerpartner))► Convene meetings to investigate distress and Convene meetings to investigate distress and

brainstorm new approachesbrainstorm new approaches► Encourage interdisciplinary solutionsEncourage interdisciplinary solutions► Introduce well-being domains into daily operationsIntroduce well-being domains into daily operations

Role of the Nurse –Role of the Nurse –Physical TransformationPhysical Transformation

► Give input into renovation decisionsGive input into renovation decisions - Furniture placement- Furniture placement - Fixtures- Fixtures - Beds and chairs- Beds and chairs - Room and household layouts- Room and household layouts - Lighting and acoustic environment- Lighting and acoustic environment

to maximize comfort, functional independence, familiarity to maximize comfort, functional independence, familiarity and accessibilityand accessibility

True Stories…True Stories…

General Approach:General Approach: Basics Basics

At the door At the door knock, identify, ask permission to knock, identify, ask permission to

enterenter Re-introduce yourselfRe-introduce yourself Sit down – face to face, eye levelSit down – face to face, eye level ““Eye of the hurricane”Eye of the hurricane” Physical space, comfort, quietPhysical space, comfort, quiet Optimize hearing and visionOptimize hearing and vision Center yourselfCenter yourself

Basics (cont.)Basics (cont.)

Speak slowly and clearly (Speak slowly and clearly (notnot loudly) loudly) Allow time for processing and responseAllow time for processing and response Eye contact, facial expression, non-verbal cuesEye contact, facial expression, non-verbal cues Project calm, kindness, empathyProject calm, kindness, empathy Appropriate touchAppropriate touch Active listening (Clarify, Rephrase, Reflect, Active listening (Clarify, Rephrase, Reflect,

Summarize)Summarize)

Other Aids to Communication Other Aids to Communication Allow time for people with aphasia to speakAllow time for people with aphasia to speak Don’t cut off, but do help fill in ideas to assist and Don’t cut off, but do help fill in ideas to assist and

confirm understandingconfirm understanding Look for “back doors” to aphasia (music, art, Look for “back doors” to aphasia (music, art,

pictures, emotional triggers)pictures, emotional triggers) Look at context and emotional content of statements, Look at context and emotional content of statements,

not details of words not details of words Always validate feelingsAlways validate feelings

Tips for UnderstandingTips for Understanding

““Getting past the words”:Getting past the words”:Six common scenariosSix common scenarios

1) Word Substitutions1) Word Substitutions Allow space for responseAllow space for response Repeat word or phrase back for clarificationRepeat word or phrase back for clarification Rephrase question backRephrase question back ““Indirect repair”Indirect repair” Use context and environment to make educated Use context and environment to make educated

guessesguesses Look for “loaded” wordsLook for “loaded” words Watch for word substitutions in Watch for word substitutions in listeninglistening too! too!

2) “Third Person” Speech2) “Third Person” Speech

Can be related to the person herselfCan be related to the person herself May relate to a recent eventMay relate to a recent event Look for emotional content more than factualLook for emotional content more than factual

3) Confabulation3) Confabulation Common in alcohol-related dementiaCommon in alcohol-related dementia Seen in other forms as wellSeen in other forms as well Memory gaps are “filled in” with false Memory gaps are “filled in” with false

informationinformation NotNot a delusion! No need for medication a delusion! No need for medication Usually no emotional distress unless Usually no emotional distress unless

challengedchallenged Helps supply a complete worldviewHelps supply a complete worldview

4) Emotional Amplification of 4) Emotional Amplification of Speech ProblemsSpeech Problems

Aphasia can change with emotional stateAphasia can change with emotional state Anxiety and agitation create additional barriers to Anxiety and agitation create additional barriers to

communicationcommunication Center YourselfCenter Yourself Quiet environmentQuiet environment Body languageBody language Listen to emotional content of wordsListen to emotional content of words ValidationValidation Move from simple and non-threatening Move from simple and non-threatening

conversationconversation more complex and emotion-laden more complex and emotion-laden

5) Reverting to a Prior Language5) Reverting to a Prior Language Use translator whenever able Use translator whenever able

But…But… beware of limitations (language beware of limitations (language mismatches, personal interpretations or “spin”, mismatches, personal interpretations or “spin”, other word-finding issues)other word-finding issues)

6) Tangential or “Nonsense” Speech6) Tangential or “Nonsense” Speech

Optimize space, quietOptimize space, quiet One staff member onlyOne staff member only Look past words (face, body language, mood)Look past words (face, body language, mood) Listen for key words or phrases and repeat backListen for key words or phrases and repeat back Listen to emotional content of words and try speaking Listen to emotional content of words and try speaking

to emotion instead of factsto emotion instead of facts ““Gibberish” can be “self-massage”Gibberish” can be “self-massage” ““Lead by following” (Jane Verity)Lead by following” (Jane Verity)

““Saving Face”Saving Face”

Asking for info can be frustrating and Asking for info can be frustrating and fatiguingfatiguing

Practice the “fine art of asking questions”Practice the “fine art of asking questions” Help fill in gaps while conversingHelp fill in gaps while conversing Recall an event and let elder add as ableRecall an event and let elder add as able Don’t diminish elder’s recollectionDon’t diminish elder’s recollection Preserve dignity in social situationsPreserve dignity in social situations

Investigating DistressInvestigating Distress Medical AuditMedical Audit - Acute illness- Acute illness - Medications- Medications Environmental AuditEnvironmental Audit - Pain, temperature, toilet, food/drink, repositioning, over- - Pain, temperature, toilet, food/drink, repositioning, over- or under-stimulationor under-stimulation Experiential AssessmentExperiential Assessment - Life history- Life history - Role play- Role play - See the world through his/her eyes- See the world through his/her eyes - Look for meaning in behavioral expression- Look for meaning in behavioral expression

Approach to DistressApproach to Distress

Consider distress to be legitimate, don’t trivialize or Consider distress to be legitimate, don’t trivialize or challenge, challenge, (his/her reality is the one that counts!)(his/her reality is the one that counts!) Approach alone, calm, centeredApproach alone, calm, centered Caring demeanor – voice, face, body languageCaring demeanor – voice, face, body language Begin by Begin by validatingvalidating emotion emotion Words won’t be heard till there is an emotional Words won’t be heard till there is an emotional connection connection Move conversation to a less emotional placeMove conversation to a less emotional place To re-orient or not??To re-orient or not?? Investigate triggersInvestigate triggers

Physical AggressionPhysical Aggression

Acute situationAcute situation 1) Provide safety for all1) Provide safety for all 2) Create space2) Create space 3) Restore calm3) Restore calm 4) Debrief4) Debrief

Safety and SpaceSafety and Space Move other people away Move other people away

Disengage yourself Disengage yourself

Position safely if able and create more Position safely if able and create more personal spacepersonal space

Restore CalmRestore Calm Only Only oneone person interacts person interacts Clear lines of sightClear lines of sight Placid facial demeanor (Take the message out of Placid facial demeanor (Take the message out of your face and put it back into your words!)your face and put it back into your words!) At or below eye levelAt or below eye level Calm, steady voiceCalm, steady voice Avoid smiles or “singsong” voiceAvoid smiles or “singsong” voice Do not argue or dispute; validate distressDo not argue or dispute; validate distress

DebriefDebrief

Listen during calming and validation for clues to Listen during calming and validation for clues to causescauses Ask how you can helpAsk how you can help Active listeningActive listening Maximize the person’s sense of controlMaximize the person’s sense of control If unable to calm, maximize safety and If unable to calm, maximize safety and leaveleave Follow-up with medical, environmental and Follow-up with medical, environmental and experiential audits (acute illness, depression, experiential audits (acute illness, depression,

constipation etc.)constipation etc.)

Personal CarePersonal Care Find best time(s)Find best time(s) Re-introduce and explain each step before Re-introduce and explain each step before proceedingproceeding Maximize autonomy and choice within Maximize autonomy and choice within framework of careframework of care Break care into “bite-sized” chunksBreak care into “bite-sized” chunks Learn Joanne Rader’s bed-bath techniqueLearn Joanne Rader’s bed-bath technique “ “SEESEE” – Slow down, Empower, Engage” – Slow down, Empower, Engage

Delusions and HallucinationsDelusions and Hallucinations

Generally over-diagnosedGenerally over-diagnosed “ “Hallucinations” often due to Hallucinations” often due to misperceptions misperceptions (visual problems, light and (visual problems, light and shadows, reflections, auditory miscues, shadows, reflections, auditory miscues, disembodied voices and sounds) or disembodied voices and sounds) or delirium delirium (due to meds or acute illness)(due to meds or acute illness) “ “Delusions” and “paranoia” may be due to Delusions” and “paranoia” may be due to forgetting, or may have basis in realityforgetting, or may have basis in reality

Don’t jump to Don’t jump to conclusions about those conclusions about those

‘delusions’!‘delusions’!

Find Experiential CausesFind Experiential Causes

“ “They don’t like me here”They don’t like me here” “ “Someone stole my purse”Someone stole my purse” “ “I hear voices at night”I hear voices at night” “ “I was raped”I was raped” “ “They’re poisoning the food”They’re poisoning the food”

Non-Pharmacologic ApproachNon-Pharmacologic Approach Consistent care partners, relationshipsConsistent care partners, relationships Maximize day-night cuesMaximize day-night cues Optimize lighting and hearingOptimize lighting and hearing Quiet night-time environmentQuiet night-time environment Eliminate overhead pages, intercomsEliminate overhead pages, intercoms Avoid conversations outside the roomAvoid conversations outside the room Minimize polypharmacyMinimize polypharmacy

ConclusionsConclusions

Each person with dementia has a unique path and individual Each person with dementia has a unique path and individual needs.needs.

In spite of deficits, many complex abilities are preserved and In spite of deficits, many complex abilities are preserved and should be identified and cultivated.should be identified and cultivated.

The brain remains plastic, and new learning can occur.The brain remains plastic, and new learning can occur. The primary task for enlightened care is to grow meaningful The primary task for enlightened care is to grow meaningful

relationships throughout the care environment.relationships throughout the care environment. The manner in which we approach people and provide care The manner in which we approach people and provide care

has profound effects on their abilities and overall well-being.has profound effects on their abilities and overall well-being.

Conclusions (cont.)Conclusions (cont.) Well-being is not dependent on one’s cognitive or functional level, Well-being is not dependent on one’s cognitive or functional level,

and should be maximized in all people.and should be maximized in all people. Think of people with dementia as inhabiting a parallel universe—Think of people with dementia as inhabiting a parallel universe—

same space and time, but somewhat different rules and values. We same space and time, but somewhat different rules and values. We must go there to find common ground for care.must go there to find common ground for care.

We must find unmet needs and adapt the care environment to meet We must find unmet needs and adapt the care environment to meet them.them.

The world of the person with dementia changes over time, and so The world of the person with dementia changes over time, and so we must also change our approach and adapt to their evolving we must also change our approach and adapt to their evolving needs.needs.

We must use creativity and collaboration to create a life worth We must use creativity and collaboration to create a life worth living for all.living for all.

Perspectives Perspectives

““When the facts change,When the facts change,I change my mind.I change my mind.

What do What do you do, Sir?”you do, Sir?” - John Maynard Keynes

Thank you!Thank you!Questions?Questions?

apower@stjohnsliving.orgapower@stjohnsliving.org585-760-2639585-760-2639

http://allenpower.wordpress.comhttp://allenpower.wordpress.comwww.alpower.netwww.alpower.net