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Managing Life with Memory Loss

September 17, 2019

Joan Thralow, OTR EmeritaClinical Specialist in Gerontology

Objectives• Normal Aging/Dementia

Dementia definition

• Understanding and managing behavior

• Taking care of the care giver

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Normal Aging/Dementia

• Thinking in the abstract…..

• Planning

• Organizing

• Symbols

• Hypothetical

• Thinking in the concrete

Sensory Cues

Goal Directed

Dementia Definition

• Dementia: the loss of cognitive function (cognition) due to changes in the brain caused by disease or trauma Severe enough to interfere with daily activities.

– Dementia is not a diagnosis.

– Cognition is the act or process of thinking, perceiving, and learning

– Cognitive functions that may be affected by dementia include the following:

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Cognitive Functions affected by dementia

• MEMORY LOSS• ORIENTATION• JUDGMENT• MOTOR/SENSORY SKILLS• INITIATION• COMMUNICATION• BEHAVIOR

Some Causes of Dementia

• IrreversibleDementiaAlzheimer’s Disease– Vascular Dementia – Lewy Body

Dementia– Parkinson’s disease– Huntington’s

Disease– Frontotemporal

Dementia

• Reversible Dementia- Major Depression– Delirium– Infections– Taking

medications wrong- Chemical Dependency

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The Diagnosis

• Making the diagnosis

• First reaction

Grief

• Now what do we do?

Overwhelming

Life changes

Grief Stages

Dr Elizabeth Kubler-Ross Dr Granger Westberg

• Denial Shock• Anger Physical Distress• Bargaining Panic• Depression Guilt/Resistence • Acceptance Hope

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Now what do we do?

• Planning ahead

a power of attorney, health care

directives, a will

Long term care

When incapacitated…who will take over

Create personal data file

Sharing time with your family

Telling others about the diagnosis

PART 2

• UNDERSTANDING AND MANAGING BEHAVIOR

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Common Behavioral Issues

• People with Dementia often act in unpredictable ways

– Anxiousness

– Aggressiveness

– Repetitive verbalizations

– Motor Disturbances

– Sudden changes in mood

Possible Causes of Behaviors

• Internal Stimuli– Thirst/Hunger

– Needing to use the bathroom

– Pain

– Too cold or too hot

– Other internal discomfort that may result from sickness or medications

• External Stimuli– Environmental noise

– Business around the person

– Unfamiliar surroundings

– Complicated tasks

– Frustrating interaction

– Inability to communicate

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Difficulty Communicating

–Effective communication is an exchange of thoughts, information, and other messages from one person to another.

–Dementia interferes with this process.

VERBALDifficulty Expressing and

Understanding

Finding the right word…nouns Reusing familiar

word or phrase Inventing new

words Focus on topic

Organizing words Native language Cursing Less speaking Arguing

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VERBAL

• ATTENTION• SIMPLE• SLOW• CLEAR AND CONCISE• TAKE TURNS• REPEAT• DON’T INTERRUPT• AFFIRMATION

NONVERBAL GESTURES

FACIAL EXPRESSIONS

TOUCH

VALIDATION

MUSIC

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I’M SO GLAD TO

SEE YOU!!

FACIAL EXPRESSIONS

TOUCH

Professional touchCaring touchUnwelcome touchWelcome touch

MUSICRecognize tunesAble to sing

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Three basic approaches to managing behavior

• I. Validation Naomi Feil

• 2. Identifying levels of ability/disability and implementing appropriate strategies (Allen’s Cognitive Disability Theory)

• 3. The ABCs of Behavior

Approaches

• Validation Therapy

• Naomi Feil – Social Worker and developer of Validation

Therapy

– Developed techniques to promote dignity

– Promote better communication with the elderly

– Reduce conflict, anguish and stress

– Improve the lives of the confused and disorientated elderly

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VALIDATION

• Join

• Validate illusion of control

• Emotional mirroring

• Approach is everything

• Distract

• Redirect

• Validation Therapy

– Respond to the emotion not the behavior

• Use simple step by step instructions with demonstration for activities

• Remain calm and resist conflict

• Therapeutic fibbing

• Limit distractions

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No short cuts to re-direct-join

-validate-distract-re-direct

Illusion of controlEmotional mirroring

Approach is everything

ReminiscenceFeelings Expressed and Validated are Relieved

• Remembering positives

• Therapeutic fibbing

• Don’t argue

• Use your knowledge of your partner to find enjoyable activities and conversation.

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Three Approaches to Managing Behavior

• Validation

• Allen’s Cognitive Theory

• The ABC Behavior Management

Allen’s Cognitive Disability Theory

.

A frame of reference that speaks to the consequences of a cognitive impairment.

Recognizes six levels of functioning with level six being normal and level one being significantly impaired.

These levels are identified by evaluating sensori-motor behavior

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Allen’s Cognitive Disability Theory

• This theory states that when there is a thinking (cognitive) problem there is a doing (functional) problem.

Sensori-Motor (task) Behavior- Internal cues (Level 1 & 2 )

- Sensory Cues, External cues

(Level 3 & 4)

- Abstract cues (related visual

cues, verbal cues, hypothetical,

symbols, ideas ( Level 5 & 6)

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Motor Performance

• Reflexive Actions (Level 1 & 2)

• Planned Actions (response to touch and obvious and familiar cues (Level 3 & 4)

• Planned Actions (abstract cues) Level 5 & 6

6 Levels of Functioning

Allen Level InformationProcessed

Activity Capacity

CaregiverAssistance

Level 6Planned Actions

Abstract or complex cues, hypothetical ideas, symbols, numbers, written informationSituations

Complicated IADLs ADLs Plans Ahead, anticipates resultsSituational awareness, effects on others

None

Level 5ExploratoryAction Learning inconcrete steps

Complex with Errors, end product/outcomeSituations

Low level complexity, segments of complicated activity, self-care routinesSituational Awareness, effect on others

Simplify/do together complex activities, monitor hazards, solve problems

Developed by Claudia Kay Allen, MA, OTR, FAOTA

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6 Levels of Functioning (cont.)

Developed by Claudia Kay Allen, MA, OTR, FAOTA

Level 4Goal Directed

Concrete visual cues, end product/outcomeSituations

Concrete activities, few steps, visual outcomes, self-care routines with set-up and remindersBasic awareness, effects on self

Eliminate or simplify complex activity, restrict hazards, solve problemsExpect misunderstandings, avoid reasoning, reassure

Level 3Manual Actions

Manual actions associated with objectsSituations

Use of objects, parts of self-careVague awareness or unaware

Step-by-step, set-up, help to start, sequence, endRefocus task, keep directions simple, avoid reasoning, reassure

Vignette: TOAST TEST

LEVEL FOUR• Observe typical level four behavior during this

task

• Goal directed

• Responses to clearly visible cues

• Increased confusion/disorganization

• Difficulty with problem solving

• Poor verbal skills

• Seeks affirmation

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Vignette: TOAST TEST

• LEVEL THREE:– Typical level three behavior observe during this

test:• Verbal skills somewhat intact (better than

functional skills)• Non goal directed• Difficulty initiating task/steps within the task• Preservative motions• Poor sequencing ability• Disordered tactile modulation• Was able to complete task with appropriate

cues and felt good about self, “Just about anybody can do this, I guess.”

Level 1 & 2

• Level 2

• Severe functional decline

• Level 1

• Late stage dementia

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Cognitive Performance Test• 1. Administered by Registered

Occupational Therapist.

2. Test score is obtained through direct

observation of trained OTR

3. Functional Assessment of sensori-

motor skill ability

4. Following obtaining score, caregiver

trained in strategies to promote safety

and independence.

Three Approaches to Managing Behavior

• Validation

• Allen’s Cognitive Theory

• The ABC Behavior Management

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The ABCs of Behavior Management

• A is the antecedent

• B is the unwanted behavior

• C is the consequence to the unwanted behavior

Behavioral Log

• Keep a log

• Identify the ABCs of the behavior

• Identify patterns to unwanted behavior

• Identify successful approaches to unwanted behaviors

• Identify unsuccessful approaches to unwanted behaviors

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Behavior LogLevel 4….aggression

Date Time B = Exhibited Behavior

A= Antecedent

(What started it)

C = Consequence

(Result of the behavior)

Outcome

Behaviors are a moving target

• What you may problem solve for now may not work later

• Behaviors communicate needs –needs change

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Remember…

• Changes in the brain cause the behavior

• The person is not doing these things on purpose

• Be understanding

• Be patient and flexible

• Explore various approaches and solutions

• Do not take things that the person may say or do personally

PART 3The Caregiver

In order to provide appropriate care

you need to be a healthy caregiver

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Objectives:Taking care of the Caregiver

• Identifying who is the caregiver• Shaping how the care giver can

influence the daily process of care giving

• Understanding the personal needs• Naming ways to care for the caregiver

WHO IS THE CARE GIVER?

• FAMILY

• FRIENDS

• PARTNERS

• NEIGHBORS

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Why focus on Care givers?

• Today about 5.7 million Americans have dementia, costing $277 billion, plus unpaid caregiving

• Higher levels of caregiver burden correlate with increased morbidity and mortality in caregivers and abuse in care receivers.

• Caregiver’s physical, emotional and financial health is at risk.

CAREGIVERS INFLUENCE DAILY ROUTINE

• Changes are gradual

• Changes are always happening

• Utilizing strategies

• Accept grief as normal

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Symptoms of care giver stress

• Overwhelmed• Sleeping• Weight changes• Tired• Interest loss

• Decreased socialization

• Worried/sad

• Irritated

• Anxious/depressed

• ER/Hospital admissions

Symptoms of care giver stress

• Overwhelmed• Sleeping• Weight changes• Tired• Interest loss• Decreased socialization• Worried/sad• Irritated • Anxious/depressed• ER/Hospital admissions

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Being a Healthy Caregiver

• Visit your physician at least annually

• Get screened for stress and depression

• Accept assistance from others

• Attend a support group

• Eat well-balanced meals

• Educate yourself about caregiving.

• Educate yourself on caring for a person with memory loss.

Questions to Ask Yourself

• What do you wish?

• What went well for you yesterday? Last week?

• What issue is causing you the most concern?

• What do you need to say “no” to?

• Who are you willing to have help you?

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Things you can do to remain healthy

• Establish a daily routine.

• Establish and maintain a good diet.

• Get enough rest.

• Exercise regularly.

• Continue with your social activities.

• Talk to family, friends, clergy as needed.

Caregiver Stress-relievers

• What do you do to relieve stress?– Read

– Shop

– Conversation over coffee with friends

– Talk with friends and family – in person, on the phone or by e-mail

– Sewing/knitting hunting/fishing golfing

– Playing cards with friends

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Psychosocial Model

Each piece of the families’ system is affected

Providers

Community

Friendships

CultureFamily

Intimacy

Psychological

Biological

SpiritualMaterial

Alzheimer’s Disease

The SERENITY PRAYER

• God grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference.

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References

Allen, C.K. (1985) Occupational Therapy for Psychiatric Diseases: Measurement and Management of cognitive disabilities. Boston: Little

Brown

Alzheimers Association: http://Alzmndak.org

Burns, T., & Haertl, K. (2018) Cognitive Performance Test: Practical applications and evidence-based use. AOTA SIS Quarterly Practice

Connections, 3(4),

Mayo Clinic http://mayoclinic.com/heath/memory-loss/HQ00094

Peterson, R, Mayo Clinic Guide to Alzheimer’s Disease, Mayo Clinic Health Information, Rochester, MN

Kubler-Ross, Elizabeth, Kessler, D. On Death and Dying, Google Books (2005)

Thralow, J., Rueter, M, (1993) Activities of Daily Living and Cognitive Levels of Function in Dementia, American

Journal of Alzheimers Disease and Other Dementias 8(5), 14-19

Westberg, G.E. (2011) Good Grief, Fortress Press PO Box 1209 Minneapolis MN 55440-1209

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