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Advanced Dementia

Care


Why is Dementia Different

as the End of the Journey

Approaches?

- It has taken a long time

- The person has changed, and changed, and

changed, and changed….

- The person has been lost, even as they remain

- How it was is not how it is

- What should happen/work, doesn’t always


The GEMS® Progression of

Dementia:

Sapphires: True Blue – Slower but Fine

Diamonds: Repeats and Routines, Cutting

Emeralds: Going – Time Travel – Where?

Ambers: In the Moment – Sensations

Rubies: Stop and Go – Big Movements

Pearls: Hidden in a Shell – Immobile

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Rubies:-Hidden depths

-Major loss of fine motor finger and mouth skills, but can do gross motor skills like walking, rolling, rocking

-Comprehension and speech halted

-Wake-sleep patterns very disturbed

-Balance, coordination, and movement losses

-Eating and drinking patterns may change

-Tends toward movement unless asleep

-Follows gross demonstration and big gestures for actions

-Limited visual awareness

-Major sensory changes


Common Ruby Issues:

- Safe mobility due to fatigue, wandering, and falls

- Intake and hydration: amount, safety

- Rest time and place: nighttime waking

- Shadowing others, invading places

- Not staying in one place, not settling for meals

- Reactions to hands on-care due to sensations

- Identifying and meeting needs

- Contractures and skin: bruises, tears, rashes,

pressure wounds

- Infections: UTI, yeast, URI, pneumonias

- Circulation


Pearls:-Hidden in a shell: still, quiet, easily lost

-Beautiful and layered

-Spends much time asleep or unaware

-Unable to move, bed or chair bound, frequently fall

forward or to side

-May cry out or mumble often, increases

vocalizations with distress

-Can be difficult to calm, hard to connect

-Knows familiar from unfamiliar

-Primitive reflexes

-The end of the journey is near, multiple systems are

failing

-Connections between the physical and sensory

world are less strong but we may be the

bridge

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Common Pearl Issues:

- Not interacting much

- Crying out but can’t make needs known

- Skin and hygiene problems

- Weight loss

- Reflexes make care challenging

- Repeated infections

- Not eating or drinking

- Not able to sit up safely


Typical Positioning – Why?

- Stronger muscles cause typical ‘fetal’

positioning

- Constant muscle activity causes

‘contractures’ (shortening) where

muscles can’t relax

- Pulling against contractures is painful

- Shortened muscles cause some areas to:

-Not get air – become ‘raw’ or ‘irritated’

-Rub or press against other body parts

-Get too much pressure – can’t move off


Primitive Reflexes to

Consider: - Startle reflex: sudden movement causes total body motion

- Grasp reflex: when palm is touched, they grip hard and

can’t release

- Sucking reflex: sucks on anything near mouth

- Rooting reflex: turns toward any facial touch and tries to eat

- Bite reflex: any touch in mouth causes them to bite down

- Tongue thrust: anything in mouth causes tongue to push

forward and out

- Withdrawal/rebound: pull away from stretch

- Gag reflex: any touch to tongue causes gagging

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General Vision Field

Changes:

Ruby: monocular vision

Pearl: movement,

familiar/unfamiliar

Receptive Language

Changes:

Ruby: social chit-chat, music,

rhythm, tone of voice

Pearl: familiar and friendly,

calm or excited

Expressive Language

Changes:

Ruby: less articulated speech,

babble, hum or sing, rhythmic

vocalizations

Pearl: sounds to single words,

responsive

Dexterity – Hand Skills:

Ruby: whole hand with limited

finger use, can hold but

release difficult

Pearl: grasp strong, limited

opening

Body Skills:

Ruby: whole body, not

segmented, front ok but back

not

Pearl: reflexive, great trouble

with gravity or speed or

movement

People Awareness Skills:

Ruby: like or not like, familiar

versus not familiar

Pearl: voices, faces, touches,

smells, familiar or not

Place Awareness Skills:

Ruby: may or may not have a

destination, more of a

movement or stillness pattern

Pearl: can tell if what is

experienced is comforting

Time Awareness Skills:

Ruby: in the experience, not the

time

Pearl: time has much less

meaning

Situation Awareness Skills:

Ruby: only in moments, less

body awareness

Pearl: more inside than

externally aware


Skills for Success in

Advanced Dementia Care:

- Meeting unmet needs with or without

words: using empathy and validation

and detective work

- Coping with and resolving distress one-

on-one

- Helping with challenging behaviors using

a problem-solving approach


Positive Physical

Approach™:

-Pause at edge of public space (6 feet)

-Gesture and greet by name

-Offer your hand and make eye contact

-Approach slowly within visual range

-Shake hands and then maintain Hand-under-Hand®

-Move to the side

-Get to eye level and respect intimate space

-Wait for acknowledgement

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Hand-under-Hand®:Protects aging, thin, fragile, forearm skin


Supportive Communication

• Repeat a few of their words with a question at

the end

• Avoid confrontational questions

• Use just a few words

• Go slow

• Use examples

• Fill in the blanks

• Listen, then offer empathy:

“Sounds like…” or “Seems like…” or “Looks

like…”


To Connect:

- Use the Positive Physical Approach™ to

get started

- Make a Visual Connection:

-Look interested and friendly

- Make a Verbal Connection:

-Sound enthusiastic, keep responses short

- Make a Physical Connection:

-Hold Hand-under-Hand®, or use flat open

hand on forearm or knee

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Then, Connect Emotionally:

- Make a connection

-Offer your name: “I’m (name) and you are…?”

-Offer a shared background: “I’m from (place)

and you’re from…?”

-Offer a positive personal comment: “You look

great in that!” or “I love that color on you.”

-Make a positive observation: “What beautiful

flowers!” or “Great photo!”


Finding Joy for Rubies:

- Walking a routine path

- Going forward

- Watching others

- Being close or having space

- Things to pick up, hold, carry, push, wipe,

rub, grip, squeeze, pinch, slap

- Things to chew on, suck on, grind

- Rhythmic movements and actions


Finding Joy for Pearls:

- Pleasant and familiar sounds and voices

- Warmth and comfort

- Soft textures

- Pleasant smells

- ‘Good’ tastes

- Smooth and slow movement

- ‘Just right’ touch and feel

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Hospitalizations and

Advanced Dementia


Essential Terms:

• Advanced Directives

• Living Will

• DNR Orders

• Durable HC-POA

• Palliative Care

• Hospice Care


-Pneumonia

-Aspiration pneumonia

-Urinary Tract Infection

-Dehydration

-Fall related injury: fracture, head injury

Why Do People With Dementia

Typically Go to the Hospital?

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•Nearly 50% of people with moderate to severe

dementia go to the hospital each year

•If someone who has dementia is hospitalized,

they are 3X as likely to go to a nursing

home after discharge

•If dementia is a dx: 30-40% more likely to have

functional decline at discharge

Some Stats:


-Treatment of 1o condition is impacted in over

75% of cases

-Stays are longer

-Functional losses are more common

-Costs of care are higher

-Outcomes are less positive

-Additional acute issues occur in 50-60% of

cases

When Dementia is a

Secondary Diagnosis:


Comparing patients with dementia and

without dementia admitted for hip

fracture repair:

•Same number of procedures

•Same types of procedures

•¼ the pain medications

•3 times the antipsychotics

Pain Management:

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-Feeding tubes are still being placed

-Feeding tube placement did not affect

outcome

-Having an infection coming in did worsen risk

for death

-Average survival with or without a feeding

tube was 6 months

More Stats:


•Falls and fall-related injuries

•Wandering or elopement attempts

•New onset incontinence

•Acute confusion: delirium

•Skin tears and skin breakdown

•Physical aggression toward care providers

•Pulling out tubes and monitoring equipment

•Inability to use call system

Acute Problems Connected to

Hospital Stays and Dementia:


Possible Problem Areas:

-Quick start of behavioral control meds to ‘deal

with’ agitated/aggressive behaviors

-Not screening for dementia, depression, and

delirium at admission

-Inaccurate interpretation of verbal reports and

behavioral symptoms

-Inadequate pain assessment and management

-Inability to tolerate inactivity, isolation,

immobility, unfamiliar environment, etc.

-Inability to interpret and tolerate sensory

experiences

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So:

-Hospitalizations happen

-Hospital stays are risky for those with dementia

-Hospital stays are stressful to staff and family

members

-Standard communication and monitoring

systems are frequently ineffective


When advanced planning takes place in

advance:

-There is greater satisfaction on the part of

family and care providers

-Quality of care is described as better

When decisions are ‘forced’ by immediate

circumstances:

-More dissatisfaction with decisions

-Longer hospital stays, more procedures

-Survival outcomes at 3 months unchanged

Advanced Planning Helps:


The Care Triad for Someone

Living with Dementia:

PLwD - Patient

Care Partner Doctor

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-Ask family to create a Personal Information Sheet

-Recommend that the family bring in ‘comfort

items’ for the individual (favorite

pictures, lotions, blankets, food, etc.) and

use them!

-Modify the room for best performance

When the Time Comes for a

Hospitalization:


Preferred name and key life history

Family information

Illnesses or other medical conditions

Medications (drugs, OTC, vitamins, herbs)

•Allergies or histories of bad reactions

•Discourage stopping ACIs if possible (Aricept, Exelon, Reminyl)

Need for glasses, dentures, hearing aid

Amount of help needed for activities

Personal Information Sheet:


Degree of impairment:

•Memory

•Language

•Understanding

•Hand skills

•Movement

•Judgment

•Impulse control

‘Hot buttons’: things that upset them such as words, actions, responses, etc.

Favorite foods or items that comfort

How do they pain or other unmet needs?

Personal Information Sheet:

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Consider using a

‘Respond’ Bracelet:

This may alert others to this person’s condition

and make them more sensitive and aware.


-There are other options

-Let people know the options

-Talk through what that means

-Feel okay about it

Should This Person Really Be

Hospitalized?


The Three D’s:

Delirium,

Depression/Anxiety,

and

Dementia

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Determine First:

Is This Delirium?

- Delirium can be dangerous and deadly

- Get a good behavior history, look for change

- Assess for possible pain or discomfort

-Assess for infections

-Assess for med changes or side effects

-Assess for physiological issues:dehydration,

blood chemistry, O2 sat

-Assess for emotional or spiritual pain


Delirium:

- Onset: sudden, hours to days

- Duration: short, can be either cured or leads to

death

- Alertness and Arousal: fluctuates, hyper or hypo

- Orientation responses: highly variable

- Mood and Affect: highly variable

- Causes: physiological, psychological

- Tx Condition: identify and treat what is wrong

- Tx Behavior: manage for safety only, it is

short term so don’t mask symptoms


Likely Causes of Delirium in

Elders:

- Infection: UTI, URI, sepsis

- Dehydration

- Drug: effect, side effect , interactions,

sudden stop, mis-taking

- Sleep deprivation: poor sleep

- Oxygen deprivation or imbalance

- Pain or discomfort: including impaction

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More Causes of Delirium:

- Sensory deprivation: vision, hearing, balance

- TIAs or little strokes in brain

- Alcohol use

- New Onset Illness: diabetes, hypothyroidism

- Nutritional Issues: intake or processing

problems

- Anesthesia: post-surgical


Second, Is it Dementia or

Depression/Anxiety?

- Often impossible to distinguish/separate

depression and anxiety

- Depression/anxiety is treatable

- Many elders with depression describe

themselves as having ‘memory problems’

or having ‘somatic’ complaints

- Look for typical and atypical depression

- Look for changes in appetite, sleep, self-

care, pleasures, irritability, ‘can’t take

this’ comments, residence or schedule

changes


Depression/Anxiety:

- Onset: recent, weeks to months

- Duration: until treated or death

- Alertness and Arousal: not typically changed

- Orientation responses: “I don’t know,” “I can’t

say,” “Why are you bothering me with

this?” or “I don’t care”

- Mood and Affect: flat, negative, sad, angry

- Causes: situational, seasonal or chemical

- Tx of Condition: meds, therapy, physical activity

- Tx of Behavior: schedule changes and

environmental support, combined with meds

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Likely Profiles of

Depression/Anxiety in Elderly:

- Combination causes

- First episode in late life not uncommon

- Re-emergence of previous undiagnosed

depression

- Resistance to seeking help

- If situational depression not addressed, it

often escalates

- Depression = somatic pain complaints


If it Looks Like Dementia:

- Explore possible types and causes

- Explore what care staff and family members

know and believe about dementia and the

person

- Determine stage or level compared with

support available and what is being

provided

- Seek consult and further assessment, if

documentation does not match what you

find out


Palliative:

- Comfort Care

- Top Priorities:

-Honor personal preferences and choices

-Manage Pain, Distress, Anxiety, Fear,

Discomfort

-Identify and seek to meet social, physical,

psychological, and spiritual needs

- Let go of fixing and move on to comforting

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So When Should You Say

‘When’?

- Cost versus benefit to the person

- What is possible versus what is probable

- Best case outcome: is it worth it?

- See the ‘big picture’ for the person

- What did they tell you before?

- Who are they and are they still able to be

that person?

- Is this about them or about you or about

someone else?


Signs that the end of the end of

the journey:Repeated infections

Antibiotics seem ineffective

Refusals to eat, even favorite items

Holding food in mouth or spitting it out

Soft coughs, wet voice

Stops moving, curling up

Sleeping a lot

Lots of low grade fevers

Primitive reflexes show up

Withdrawal from those around, closing eyes

Drifting in and out

Says ‘good-bye’

Talks about ‘going home’

Asks permission to go

Albumin drops very low

Wounds won’t heal

Can’t keep weight on

Skin and bones

Moaning but not actively communicating


Changes Near the End:

- Primitive reflexes become strong

- Flexor tone dominates

- Temperature control is broken

- ‘Skin and bones’ appearance, not hungry or thirsty

- Spends more time drowsy or ‘inside’ themselves

- Infections are common

- Startles easily, harder to calm

- Pain from stiffness, immobility, dry mouth/skin, etc.

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Comfort Care: What Does

This Look Like?

- Using comfort measures that help

- Providing a supportive sensory and

physical environment

- Meeting the needs of the body through

temperature, positioning, touch,

smells, taste, sight, sound, movement

- Celebrating and connecting to the spirit

within through your presence and

involvement


What Does This Mean?

- Reduce or stop monitoring if there is not

a ‘treatment’ that will be pursued

- Provide what the person wants or needs,

not what is ‘best’ for them

- Provide comfort

-Assess for and manage pain, discomfort,

or distress

- Give them permission to ‘go’


What Does This Mean?

-Don’t treat infections, but treat the discomfort

of infections

-Don’t force intake, but offer tastes and

textures

-Don’t push fluids or put in IVs, but offer fluids

(possibly thickened)

-Don’t force movement, but use touch,

massage, and controlled repositioning

-Don’t just ‘do the care’ then leave alone, but be

present

-Don’t force interaction but balance offerings of

silence with communication/contact

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local laws, with ALL rights reserved. No part of this may be copied, or changed in any format, sold, or used in any way other than what is outlined within this under any

circumstances without express permission from Positive Approach to Care.

Copyright 2017, All Rights Reserved

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