Overview of Alzheimer’s Overview of Alzheimer’s Disease and Other Disease and Other

DementiasDementiasColloquium

The Aging Population, Alzheimer’s and Other Dementias:Law & Public Policy

University of Iowa College of LawJanuary 26, 2012

Kathleen Coen Buckwalter, PhD, RN, FAANProf. Emerita of Gerontological Nursing

Co-Director, National Health Law and Policy Resource Center

More than “confusion”More than “confusion”

Many things can interfere with memory Being overloaded; having too much going

on at one time Medications, even ones taken according to

directions Illness and disease that are unrelated to

brain disease Unfamiliar surrounding such as relocation

or hospitalization

DementiaDementia

Permanent loss of mental abilities caused by damage to brain cells

NOT a “normal” part of aging! The common end result of many entities

diseases traumas infections drugs

Dementia: Essential FeaturesDementia: Essential Features

Progressive loss of intellectual abilities . . .

MEMORY impairment Short-term early Long-term later

Loss of LANGUAGE Loss of ability to express oneself Loss of ability to understand what is said

Dementia: Essential FeaturesDementia: Essential Features

Loss of PURPOSEFUL MOVEMENT Has the physical ability Can’t perform the task (e.g., getting

dressed) Loss of ability to accurately

interpret SENSORY INFORMATION Cannot understand what is seen,

heard, felt Not related to sensory impairment

Dementia: Essential FeaturesDementia: Essential Features

Impairments in . . . Abstract thinking Ability to reason Judgement Impulse control

Personality changes Not “him/herself”

Who has dementia?Who has dementia? REVISEDREVISED Dementia is a “generic term”

Many different types Alzheimer’s disease Most common type

Risk increases with advancing age 25% of 80 year olds 33% of 85 year olds 50% of 90 year olds

Who has dementia? Who has dementia? REVISEDREVISED

Common problem among nursing home residents: 50% to 80% have dementia

Increasing problem among those in assisted living: [add statistic here]

Dementia: TypesDementia: Types

Alzheimer’s Typea.k.a. Alzheimer’s Disease = Most common 360,000 new cases annually 4 million Americans afflicted 4th leading cause of death 14 million (1 out of 45) by the year 2050 80% of population in nursing homes Leading cause of behavioral symptoms

Types

Dementia: TypesDementia: Types

Vascular, a.k.a., Multi Infarct = 2nd most common

Mixed Alzheimer’s AND Vascular = 3rd most common

Types

Dementia: TypesDementia: Types

Dementia due to . . . HIV Disease Parkinson’s Disease Huntington’s Disease Head Trauma Substance-Induced Persisting Dementia

Types

Dementia: TypesDementia: Types

Dementia due to . . . Pick’s Disease Creutzfeldt-Jakob Disease

Types

Dementia: TypesDementia: Types

Not specifically listedin DSM-IV . . . Diffuse Lewy Body Disease Frontal Lobe Dementia

Many medical causes! Normal Pressure Hydrocephalus Anoxic damage Vitamin deficiency

Types

Dementia: TypesDementia: Types

Bottom Line:

All Alzheimer’s is DEMENTIA . . .but not all DEMENTIA is

Alzheimer’s!!

Types

Dementia: TypesDementia: Types

LOTs of variability in presentation! Within specific types . . . BETWEEN types . . .

Overlapping syndromes are common Dementia AND delirium Alzheimer’s AND vascular dementia

Types

““Reversible” DementiaReversible” Dementia

Multiple health problems may cause “confusion”

Always explore alternative causes Treatment of underlying physical

problem may arrest losses Problems not fully “reversible” but

remaining capacity may be preserved

D-E-M-E-N-T-I-AD-E-M-E-N-T-I-A

D rugsE motionM etabolicE ndocineN utritionT raumaI nfectionA lcoholism

Like working a puzzle . . .

Diagnosis of Alzheimer’s:Diagnosis of Alzheimer’s:New Criteria and GuidelinesNew Criteria and Guidelines

Preclinical Alzheimer’s Disease Mild cognitive impairment (MCI) due to

Alzeimer’s Disease Dementia due to Alzheimer’s Disease

Stages of Dementia for Stages of Dementia for Behavioral and Environmental Behavioral and Environmental ApproachesApproaches

Early - Forgetful Middle - Confused Later - Ambulatory Terminal - Endstage

Early: ForgetfulEarly: Forgetful

Short-term memory impaired Loses things Forgets

Blames stress, fatigue

Compensates with lists, memory aids

Depression common

Later: ConfusedLater: Confused

Loss of memory Increasing

disorientation Time Place Person Things

Confused: ExampleConfused: Example

“Helen” crochets using a single simple stitch but doesn’t remember that she is retired - and sometimes puts her bra on over her blouse.

“Harold,” greets everyone like his oldest friend (“Nice to see you! So good of you to drop by! I’m great! How are you?”) but doesn’t know his own wife.

Confused: ExampleConfused: Example

“Mildred” avoids the question “How old are you?” with “Jack Benny and I are both 29.” When asked what she had for lunch, she replied, “I went to the Riviera and had pink champagne and caviar.”

“George” got lost walking in his neighborhood of 30 years -- as soon as he could no longer see his own house.

Later Still: Ambulatory Later Still: Ambulatory DementiaDementia

Progressive loss of ability interferes with FUNCTION

Increasingly withdrawn and self-absorbed

Depression tends to resolve

Ambulatory: Functional lossesAmbulatory: Functional losses

Willingness and ability to bathe Grooming Choosing among clothing Dressing Gait and mobility Toileting Communication, reading, and writing skills

Ambulatory: BehaviorsAmbulatory: Behaviors

Behavioral symptoms more common Irritability Agitation Anxiety Pacing

Reduced tolerance for stress

Resistiveness to care

Endstage DementiaEndstage Dementia

All abilities lost Mute No longer walks Little purposeful

activity Forgets to eat, chew,

swallow Complications are

common

Symptoms: Not in distinct Symptoms: Not in distinct stages!stages! Losses and symptoms vary from person

to person, depending on Extent of brain cell death and loss Location of brain cell death and loss Speed with which losses occur

Common Behavioral Common Behavioral SymptomsSymptoms Concealed memory losses Wandering Sleep disturbance Losing and hiding things Inappropriate sexual behaviors

Common Behavioral Common Behavioral SymptomsSymptoms Repeating questions Repetitious actions Territoriality Hallucinations Delusions Illusions

Catastrophic BehaviorsCatastrophic Behaviors

Agitation Combativeness Confusion Fearfulness Night wakening

Noisy behavior Purposeful

wandering Sudden withdrawal

from activities “Sundowning”

Unexpected, intense, and “out of proportion” reactions to a situation . . .

Dementia Care PracticesDementia Care Practices

General Slow down, Eye contact, Cueing Redirecting, Distracting, Reassurance Comfort measures (pain meds, food) Individualized interventions Promote continuity between levels of care Pain management Interdisciplinary team approach Person vs. Disease focus

Nursing Care Nursing Care Models/ApproachesModels/Approaches Need-Driven Dementia-Compromised

Behavior Model Understandable needs not disruptive behaviors Background/proximal factors

Progressively Lowered Stress Threshold Model Less able to manage stress as a disease

progresses Modify internal/external environment Support vs challenge, promote safety/comfort

Other Models/Approaches to Other Models/Approaches to CareCare Person-Centered Approach (Kitwood)

Understanding vs management Well-being/personhood DCM

Validation (Feil) Response to feeling/meanings/internal context of

behavior Need to be valued*(Livingston, et al., 2005 and Old Age Task Force of the World

Federation of Biological Psychiatry) Using Oxford-Center Guidelines

Formal/Informal Caregiver Formal/Informal Caregiver InterventionsInterventions Psychoeducation and Skills Training

Change interactions Behavioral management FIC Staff Education Services, social and cognitive support Family Counseling(Fossey et al., 2006; Maas et al., 1994; Mittelman et

al., 1996; Pusey & Richards, 2001; Schultz et al., 2002)

Pharmacological Pharmacological InterventionsInterventions

Non-Pharmacological Management Non-Pharmacological Management of Behavioral and Psychological of Behavioral and Psychological Symptoms of Dementia (BPSD): Best Symptoms of Dementia (BPSD): Best PracticesPractices Interventions No “easy” answers Complicated by changing clinical course

Principles of Care: Adjust daily routines Change reaction and responses to behaviors Monitor and adjust the environment, remove triggers Adjust interaction and communication strategies Gould

(2007) Williams (2005)

(Ballard et al., 2009; Burgener & Twigg, 2002; Smith & Buckwalter, 2005)

Non-Pharmacological Non-Pharmacological Management, cont’dManagement, cont’d Cognitive training: Early Stage (Yu et al.,

2009) Cognitive stimulation, memory rehab, R.O.,

Neuropsychological Rehabilitation Structured Activities

“Simple Pleasures” Recreational Physical (exercise and movement)

(Alzheimer’s Assoc, 2007; Buettner et al., 2008; Cohen-Mansfield, Libin & Marx, 2007; Kolanowski, Litaker, & Buettner, 2005; Opie, Doyle, & O’Connor, 2002; Richeson et al., 2008; Volicer & Hurley, 2003)

Socialization Pets Reminiscence, R.O. Video Respite Simulated Presence Therapy

Sensory Enhancement/Stim Expressive Arts Music Aromatherapy Snoezelen

(Burge-Allen, Stevana, & Burgio, 1999; Gerdner, 2005; Mahoney, Volicer, & Hurley, 2000; vanWeert et al., 2005)

Non-Pharmacological Management, Non-Pharmacological Management, cont’dcont’d

SummarySummary

Alzheimer’s disease is INCURABLE, but not UNTREATABLE! Preserve & enhance remaining abilities Avoid unnecessary stress &

overstimulation Treat illness or other complications Provide education & guidance for families

and other caregivers