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© Dementia Care

Matters 2009

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Feeling at home in yourself

Feeling … peaceful

settledcalm contentsafesecure belongingcapablecomfortablepresenthappyfreeconfident able

A personA placeA thing

that helps you feel at home in yourself !

Identity

ComfortInclusion

Occupation

LOVE Attachment

Your well being is sustained by your relationship to

people, places & things.

Behavioural and Psychological Symptoms of Dementia

• Screaming

• Restlessness

• Physical Aggression

• Agitation

• Wandering

• Anti-social behaviours

• Cursing• Shadowing• Anxiety• Depression• Withdrawal• Hallucinations• Delusions• Psychosis

We rely on these relationships to keep our stress (arousal) at a comfortable levels and avoid escalated negative emotions (affect).

“Affect Regulation”

These relationships shape how we feel

Think of a time in your life when you felt stressed.

Discuss in pairs

How did you know you were stressed?

What do you do when you are stressed?

Who/What helped?

Feeling Stressed!

Hot

Sweaty

Palpitations

Racing mind

Restless

Muscle Tense

ShallowBreathing

indigestion

Head ache

Shout Swear

Cry RestlessReactive

ShutdownWithdraw

Controlling

WorryingObsessive

Hyper Sensitive

IrritableAggressiveAccusative

ArgumentativeAgitatedParanoid

Eat CleanTake dog for a walk

Smoke DrinkGo for a walk

Take time out

Have a bath

Tidy the house

Solve the problemSeek helpCall a friend

Watch TVListen to Music

Go shoppingWork Exercise,

Meditate

Angry

Anxious

Panicked

FearfulRage

Tearful

Think of a time in your life when you felt bored.

Discuss in pairs

How did you know you were bored?

What do you do when you are bored?

Who/what helped?

Feeling Bored!

Tired

Lethargic

HeavyLow

Slow

Absentminded

Numb

Depressed

Frustrated

IrritableSad

DespairLoss

WorthlessEmpty

Grief Shame

Wandering Sleepy

DisengagedListless

DistractedRestless

Wander

AgitatedIrritable

Day dreamy

AttentionSeeking

Withdrawn

RepetitiveComplain MoanySwitch off

ANYTHING!Read

Watch TV

TidyClean

Call a friend

Sort

Go shopping

Emails

TextsComputer game

SudokuIroning

Listen to radio

Self regulation - helps to keep our stress at a comfortable levels (arousal) and avoid escalated negative emotions (affect).

Our coping strategies help us feel at home in

ourselves

Self Regulation

To stay in our comfort zone we need the following abilities –

• To know and manage our feelings and emotions

• To reflect and respond adaptively to situations

• To communicate our feelings and needs effectively

• To make use of these abilities in relationships

These processes require “Neural Integration” i.e. different parts

of the brain working with each other in the service of self

regulation. (D.Siegal)

The capacity for self regulation is undermined by the

neuropathology of a dementia!

Hot

Sweaty

Palpitations

Racing mind

Restless

Muscle Tense

ShallowBreathing

indigestion

Head ache

Shout Swear

Cry RestlessReactive

ShutdownWithdraw

Controlling

WorryingObsessive

Hyper Sensitive

IrritableAggressiveAccusative

ArgumentativeAgitatedParanoid

Angry

Anxious

Panicked

FearfulRage

Tearful

Tired

Lethargic

HeavyLow

Slow

Absentminded

Numb

Depressed

Frustrated

IrritableSad

DespairLoss

WorthlessEmpty

Grief Shame

Wandering Sleepy

DisengagedListless

DistractedRestless

Wander

AgitatedIrritable

Day dreamy

AttentionSeeking

Withdrawn

RepetitiveComplain MoanySwitch off

Loss of capacity to self regulate

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Vulnerable to traumatic stress + heightened negative emotion

Hyper or hypo arousal leads to intense negative emotions

Symptoms of Traumatic Stress

Ref. L. Cozolino, S. Porges

Feeling.. Peacefulbelongingcapablecomfortablepresenthappyfreeconfident ablesettledcalm contentsafesecure

depends more on the quality of our relationships

Relationships

Opportunities for “interactive regulation”

Comfort – calming/soothing, people, places and things …

Occupation –Stimulating/enlivening, people, places and things …

Relationships with people places and

things need to meet our attachment needs

Consider -

the peoplethe placesthe things

that help you feel at home in yourself?

What is it about them that helps you feel at home?

1. A Dementia 2. Culture of Care

changes your relationships to people, places and things.

People

Language Behavior Body Language

Institutions!

“Units” “Wards” “Suites”

Nothing – no thing!

Touch things in scheduled activities

NO – THING !

© Dementia Care

Matters 2009

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© Dementia Care

Matters 2009

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Emotionally intelligent staff

Responsive to feelings & needs

Recognise that every interaction shapes

quality of life

Look more like friends than people in charge

Sit down and hang out

Eat with people living with dementia

Close, loving and affectionate

Understand the difference between care

and control

© Dementia Care

Matters 2009

© Dementia Care

Matters 2009

Removal of Them and Us Barriers

No more trolleys or uniforms

Shaped by the life history of individuals in care

People look and feel free

Institutionalfeatures removed

Relaxed ‘go with the flow’ feel

No sense of the rigid routines

Lots of 30 second connections

Lots of 60 second activities

Adapted to individual needs/abilities

Stuff everywhere i.e. “clutter”

Relates to individual life history

Triggers emotional memories

Matched to stages of dementia

Half done things to finish off

Themed and staged activities

Enables people to occupy themselves independently

of carers

Comfort objects, sensory calming things.

Household items and sensory stimulating things

Group Living

Attachment needs

Care Tasks

Reducing Routine Bound Care

Being a Butterfly

Change the moment

Turn tasks into experiences

Spontaneous and go with the flow

Go along with different realities

Focus on social interaction

Use stuff in interactions

Stage activities rather than run them

Aware of controlling language & behaviours

People experiencing the early stage of a dementia

People experiencing a different reality

People experiencing the late stages of a dementia

Lots of opportunity for domestic activitiesAccess to domestic and functional household itemsSmall reminiscence groups, themed reminiscence boxesLots of opportunity for conversation and “banter” during care giving interactionsPartnerships in domestic and daily living activitiesGreater independence in daily living tasks

Domestic things/tasks/jobs laying around half done and to be finishedThemed and personalisedrummage boxesOpportunities for people to live out the past jobs, vocations, roles that may be part of their realityLots f stuff to hand to rummage through

A care team that can role play and go along with different realities to meet underlying emotional needs rather

Comfort objects, dolls, stuffed toys to hand

Soft and textured fabricsOpportunities for sensory stimulation and soothing at different times of daySensory items related to individuals life history immediately to hand/within reachA care team that is able to be still, close, affectionate, tactile to meet attachment needs

MATCHED CAREGIVING & THE STAGES OF A DEMENTIA

10%5%

70%

10%5%

0%10%20%30%40%50%60%70%80%

Positive Social Positive Care Neutral Negative

Protective

Negative

Restrictive

Dementia Care Matters Study (c) - 700 Audits Across

UK - Average Results

Quality of life is determined by quality of relationshipswith people places and things

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Dementia Care Matters Butterfly Household Model of Care

A therapeutic environment between people, places & things that meets peoples individual attachment needs

42 Accredited Butterfly Care Homes in UK, Ireland, Canada & Australia

15 Butterfly projects UK, Ireland, Canada & Australia

You’re a person, in a place, with things!

What can you do to create a culture of care that helps people with a dementia feel at home?

“Contact with dementia or other forms of cognitive disability can - and indeed should - take us out of our customary patterns

of over busyness, hyper-cognitivism and extreme talkativityinto a way of being in which emotion and feeling are given a much larger place …. they are asking us, so to speak, to heal

the rift in experience that western culture has engendered, and inviting us to return to aspects of our being that are much older

in evolutionary terms: more in tune with the body and its functions, closer to the life of instinct.”

Kitwood, T. 1997. Dementia Reconsidered: The Person comes First. Buckingham: Open University Press.

Attachment Interactions

Dementia Care Matters Butterfly Home

Dementia Care Matters Butterfly Home

24 hour visible and available snacks

Dementia Care Matters Butterfly Home

Behavioral & Psychological Symptoms

Wandering Listless DisengagedDistractedDespairingLow self esteemGriefShameDay dreamyAttention SeekingParanoia

RepetitiveMoodySwitched offAbsent mindedDepressedFrustratedAnxiousAngryFearPanic

SwearingCrying RestlessnessReactivityShutdownWithdrawWorryingIrritabilityAggressionArgumentativeAgitatedShouting

Symptoms of Dementia or traumatic stress? Focus on the individual or the quality of their relationship?