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dementia beyond disease:enhancing well-being

G. Allen Power, MD, FACPAlmacasa - Workshop17 April, 2019

Opening Exercise

If a time should come when you could not speak

for yourself, what are 2-3 important things that

you would want others to know about you?

Overview, Expectations, and Challenges…

What are your questions or expectations? What are your barriers and

challenges?

Agenda • Exploring well-being

• What is Dementia?

• What is ‘Dementia Beyond Drugs’ - Shifting paradigms

• An Experiential model - Three pillars

• Transformation—Personal, Physical, Operational

• Face-to-face skills for communication and understanding

• Well-Being Approach to Distress

• Antipsychotic reduction—considerations

• Action planning, Questions

Exploring Well-being

Question:

What gives you a sense of well-being?

One Framework for ViewingWell-being

Identity (Identität)Connectedness (Beziehung)

Security (Geborgenheit)

Autonomy (Autonomie)

Meaning (Zinn)

Growth (Wachstum)

Joy (Freude)

“The Eden Alternative Domains of Well-Being ”,℠Adapted by Power (2014)

Paired interviews:What gives you a sense of each domain

of well-being?

Benefits of Focusing on Well-Being

• Sees the illness in the context of the whole person

• De-stigmatises personal expressions

• Understands the power of the relational, historical, and

environmental context

• Focuses on achievable, life-affirming goals

• Brings important new insights

• Helps eliminate antipsychotic drug use

• Is proactive and strengths-based

Helping Restore Well-Being for People Living with Dementia

Walking exerciseWhat are simple ways we can help enhance

well-being for people with dementia

A question for you…

What is Dementia???

Medical definition

• Dementia is not a single disease. It is a “syndrome”—a collection on signs and symptoms that can have many causes and can vary with each individual.

• There are probably over 100 different causes of dementia

• Most people have problems with memory, though not all. But dementia is more than just memory loss; many types of thinking and perception can be affected

• Dementia is not a temporary confusion, like short-term delirium from an infection

• Dementia involves difficulties with multiple thinking processes, and they must be severe enough to interfere with daily living

Some common causes of dementia

• Alzheimer’s disease (most common)

• Vascular dementia

• Dementia with Lewy bodies

• Frontotemporal dementia

• Alcohol or drug abuse

• Advanced Parkinson’s disease

• Head trauma (especially repetitive)

• …and many more

Common symptoms of dementia

• Memory loss

• Concentration

• Orientation

• Language

• Executive function: (planning, problem-solving)

• Visuospatial skills

• Other sensory changes

• Sequencing

Sensory changes with dementia (and/or aging)

• Vision (decreased vision, color perception, night vision, peripheral vision; shadows)

• Hearing (decreased hearing, but sensitivity to loud noises; trouble filtering sounds)

• Smell (changes in smell or unusual odors, like smoke)

• Taste (changes in taste for foods)

• Touch (may be decreased sensation or oversensitivity to some stimulation)

• Life Changes Trust brochure: http://www.lifechangestrust.org.uk/sites/default/files/Leaflet.pdf

Why I avoid “stages”

What medical questions do you have about dementia?

Mirror exercise

What do we mean by “dementia beyond drugs”??

U.S. Antipsychotic PrescriptionsSince 2000

ØU.S. sales, (20002014): $5.4 billion

~$20 billion (60 million prescriptions)

Ø#2 drug sold in the US in 2015 was Abilify

(aripiprazole): US$7.2B

Ø29% of prescriptions dispensed by long-

term care pharmacies in 2011

ØOverall, 14.6% of all people in US care

homes are taking antipsychotics—down from

(23.9%) at beginning of initiative in 2012

ØThis still means 20 - 25% of those with a

diagnosis of dementia are being given

antipsychotic meds (maybe more, due to

labelling and ‘drug diversion’).

Global Perspective on Antipsychotics in Care Homes

• Australia (2010, 2011): ~33%

• NZ (Hawkes Bay 2005, BUPA 2009): residential care—

17/15%, private hospital—30/24%, ‘dementia unit’—60/54%

• Survey of care homes in eight European countries (2014):

avg. 32% (Range 12% - 54%)

• Health Quality Ontario (2015): 28.8% (Range 0% – 67.2%)

• Worldwide, in most industrialised nations, with a diagnosis of

dementia: ~25-35%

BUT…Antipsychotic overuse is not only a

care home problem!• Limited data suggests the problem may be even greater in the

community (US-HHS report: 14% of 1 million community-dwelling Medicare beneficiaries with dementia)

• If 70-80% of adults living with dementia are outside of care homes, there are probably over 500,000 Americans with dementia taking antipsychotics in the community (vs. ~180,000 in care homes)

• This pattern is likely true in other industrialised countries as well

• Our approach to dementia reflects more universal societal attitudes

The Last Words?

1) Antipsychotics are largely ineffective and

dangerous

2) In fact, there is no chemical rationale for using

antipsychotics other than sedation, (including

Dementia with Lewy bodies)

BUT…

Antipsychotics are not the problem!

The real problem is the idea that people need a pill!

The “Pill Paradigm”

• This comes from deep-seated societal patterns and beliefs:

- Stigma

- Ageism and able-ism

- Desire for the “quick fix”

- Constant marketing of pharmaceuticals as the answer

to our needs

• . . . All fueled by a narrow biomedical view of dementia

The Biomedical Model of Dementia

Fallout from a Narrow Biomedical View

Looking to pills for well-being

Stigma Disempowerment

“Dementia Care”

“BPSD”

Example of stigma:Ed Voris’ story

Biggest Danger of Stigma

Self-Fulfilling Prophecies

Kate Swaffer

Old Thorazine Ad

How much have things really changed since

then??

Do We Hold People Living with Dementia to a Higher Emotional

Standard than Ourselves??You and I People with Dementia

Walk, explore, do our “steps,” get bored and leave

“Wander,” “elope,” “exit-seek”

Get restless when forced into others’ rhythms

“Sundown”

Shop in bulk “Hoard”

Get angry, sad, anxious or frustrated

Exhibit “challenging behaviours”

Do not like being locked up, bossed around or touched by strangers

Are “resistive,” “agitated,” or “aggressive”

The Problem with BPSD

• Relegates people’s expressions to brain disease

• Ignores relational, environmental, and historical factors

• Pathologises normal expressions

• Uses flawed systems of categorisation

• Creates a slippery slope to drug use

• Does not explain how drug use has been successfully

eliminated in many care homes

• Misapplies psychiatric labels, such as psychosis, delusions and

hallucinations

• Has led to inappropriate drug approvals in some countries

Words and actions usually Represent…

• Unmet needs / Challenges to well-being*

• Sensory Challenges*

• New communication pathways*

• Expressions of choice or preference*

• New methods of interpreting and problem solving*

• Response to physical or relational aspects of environment*

• May be perfectly normal reactions, considering the

circumstances!*

• Expressions that threaten one’s dignity and personhood* (D.

Greenwood: ‘Dignity distress’)

(*NO medication will help these!)

Shifting ParadigmsHow would you respond if you were told:

“Over 90% of people living with dementia will experience a BPSD during the course of their illness.”

VS

“Over 90% of people living will dementia will find themselves in a situation in which their well-being is not

adequately supported.”

The Story of Ray

Question…

What medication would have helped Ray???

A New Model(Inspired by the ‘True Experts’…)

A New Approach Rests upon Three Pillars

• “Experiential model of dementia”

• Well-being as a primary outcome

• Transformation of the living/care environment

A New Definition

“Dementia is a shift in the way a person experiences the world

around her/him.”

Where This “Road” Leads…

• From fatal disease to changing abilities

• From psychotropic medications to ‘ramps’

• A path to continued growth

• An acceptance of the ‘new normal’

• A directive to help fulfill universal human needs

• A challenge to our interpretations of distress

• A challenge to many of our long-accepted care practices

In Other Words:

Everything changes!

Myths and Stereotypes

• People with dementia cannot make decisions

• People with dementia cannot learn or grow

• People with dementia become like children again,

and we must ‘parent’ our parents

A New Primary Goal:Enhance Well-being

the ‘punchline’…

• What if most of the hard-to-understand distress that we see is

actually related to the erosion of one or more aspects of the person’s

well-being??

• Well-being is a need that transcends all ages, abilities, and cultures,

and yet…

• There is no professional training program that teaches about well-

being and how to operationalise it…

• So… is it any surprise that people we care for have ongoing distress,

even though we have ‘done everything we can think of’ to solve it???

For example…

• Addressing resistance during bathing becomes more than simply

adjusting our bathing technique.

• It involves ongoing, 24/7 restoration of well-being, especially

autonomy, security, and connectedness

• These domains of well-being must be not only be appreciated, but

actively operationalised throughout daily life

• This requires a transformative approach to support and care in all

living environments (i.e., ‘culture change’)

So what does this have to do with ‘culture change’??

Everything!!

Why it matters

• No matter what new philosophy of care we embrace, if

you bring it into an institution, the institution will kill it,

every time!

• We need a pathway to operationalise the philosophy—to

weave it into the fabric of our daily processes, policies

and procedures.

• That pathway is culture change.

Transformation

• Personal: Both intra-personal (how we see people living with dementia) and inter-personal (how we interact with and support them).

• Physical: Living environments that support the values of home and support the domains of well-being.

• Operational: How decisions are made that affect people with dementia, fostering empowerment, how communication occurs and conflict is resolved, creation of care partnerships, job descriptions and performance measures, etc., etc.

Checking the CowsWhy ‘Nonpharmacological Interventions’

Don’t Work!

The typical “nonpharmacological intervention” is an attempt to

provide person-centered care with a biomedical mindset

• Reactive, not proactive

• Discrete activities, often without underlying meaning for the

individual

• Not person-directed

• Not tied into domains of well-being

• Treated like doses of pills

• Superimposed upon the usual care environment

One’s own home can be an institution…

• Stigma

• Lack of education

• Lack of community / financial support

• Care partner stress and burnout

• Inability to flex rhythms to meet individual needs

• Social isolation

• Overmedication in the home

And…Culture change is for everyone!!

• Residential care homes

• Home and community-based living

• Regulators

• Reimbursement mechanisms

• Medical community

• Families and community supports

• Liability insurers

• Etc., etc.

Caution…

Words Make Worlds!

Table discussion

What do you think of these? What might you say instead?

• Demented; Suffering from dementia

• Behaviour problem

• Wanderer

• Non-compliant

• Aggressive

• Others?

Al’s simple language rule

Never use a word or phrase to describe someone that you would not want used to describe you, or

someone you love.

Two quotes

Richard Taylor Sarah Rowan

Physical Transformation

• Creating living environments that reflect the values of

home, rather than institutions

• Awareness of sensory challenges in dementia

• Attention to acoustic environment

• Maximizing familiarity, accessibility, comfort and meaning

• How do we reinforce the “sick role”??

Lighting• How much light does a person need at age 65? At age

85?

• Natural light and biorhythms

• Glare

• Ambient light vs. targeted light

• Flooring, colors and patterns

Sound

• Visualisation exercise: What do you hear? What does a person living with dementia hear?

• Normal sounds: Good or bad?

- Television/radio

- Voices

- Emotions

- Music

Operationalising Domains of Well-Being: A few simple (and not-so-simple)

examples…

Example:Identity

‘Sundowning’, ‘Elopement’, and

natural rhythms and activity patterns

Connectedness

Dedicated Staff

Assignments“It Takes A Community - A relationship-

centred approach to celebrating and supporting old age”

(https://www.youtube.com/watch?v=IUJWFWXz-wY)

Daniella Greenwood

Former Strategy and Innovation Manager

Arcare Aged Care

• 36 residential care communities in Victoria, Queensland, and NSW

• Some “sensitive care” areas for people living with dementia

• Daniella Greenwood (former Dementia Strategy and Innovation

Manager) – appreciative inquiry survey of 80 elders, staff and family

members

• Identified four main categories, including “connections”

• Many comments highlighted the importance of continuous

relationships

• Began to formulate a pathway for dedicated staff assignments in all

areas where people live with dementia

Arcare (cont.)

• Staff education sessions

• Re-application process for all hands-on staff, must

work at least 3 shifts/week with the same 6-8 residents

every time

• Positive feedback from most staff and managers

• Within 6 weeks, staff spending more time with elders,

without sacrificing task completion

Arcare (cont.)

• One early-adopting community (38 residents):

- 69% decrease in chest infections

- 90% decrease in pressure injuries

- 100% decrease in formal complaints from families

- 45% increase in family satisfaction

- - Decrease in average day/evening personal care staff over a

month from 28 per person 5 or 6!!

Results (cont.)

• 25% reduction in skin tears

• 12.9% reduction in falls

• 2.92 kg average weight gain

• 51.6% reduction in PRN psychotropic medication use

Results (cont.)

• 27.5% reduction in sick leave

• 50.2% reduction in staff turnover

• 19.8% increase in job satisfaction for care aides

• 30% increase in job satisfaction for nurses

Castle & Anderson, (2011, 2013)

• Study 1: 2839 US nursing homes

- Significant decreases in pressure sores, restraints, urinary

catheters, and pain in homes with >80% dedicated staff

• Study 2: 3941 US nursing homes

- Significantly fewer survey deficiencies in several quality of life and

care categories with >85% dedicated staffing

- Follow-up study also showed significantly lower care aide turnover

and absenteeism

Two recent studies(Kunik, et al. 2010; Morgan, et al. 2013)

• Factors leading to ‘aggressive behaviour’

• Both studies found a major factor to be a decrease

in consistency and quality of staff-elder

relationships

Operationalizing Well-BeingA Few More Examples

• Preferred name, Evolving and bridging identity, Move-in process

(Identity)

• Knocking, Alarm removal (Security)

• Continual consent (Autonomy)

• Rituals (Meaning, Growth, and Joy)

• Opportunities to care and share wisdom, AAWA volunteer project

(Meaning, Growth)

• Simple Pleasures (Joy)

Reframing exercise

Reframing exercise

Face-to-Face Approaches

At its Most Basic Level…

Good Communication

Is

Empowerment!!!

your turn…

What are some basic

communication tips we should

always try to keep in mind?

Knock!

F24

This is their home.

First Steps…

• Re-establish the relationship

• Optimise comfort, hearing, and vision

3 Reasons to sit down…

Presence

Body language

Mehrabian, A. Silent Messages. c.1972 Wadsworth Publishing (now Cengage).

The ‘verbal-nonverbal connection’

speaking• Slowly and clearly, mirror pace of person

• Do not talk down or patronise

• Don’t address like a child

• Be genuine

• Enunciate consonants if hard of hearing—don’t speak too

loudly

• Speak as to any normal person

Christine Bryden Dancing with Dementia

‘As we become more emotional and less cognitive, it’s the way you talk to us, not what

you say, that we will remember.

‘We know the feeling, but we don’t know the plot. Your smile, your laugh, and your touch

are what we will connect with.’

listening• Mindfulness

• Focus on the person

• Open, accepting presence, body language

• Pay attention to the person’s emotional content and body

language

• Always validate feelings

• Watch for ’embodied expressions’ of choice

Other communication tips• Give people the time to speak

• Do not cut them off, but do help fill in ideas to help and

confirm understanding

• Rephrase questions to help get people ‘unstuck’

• Speak to the underlying feelings

• ‘Speak like a sports interviewer’

Rephrasing questions as statements

• What did you have for lunch today?

• Was your daughter in to visit this weekend?

• Do you remember our 25th anniversary?

• Where did you live?

• How are you today?

Working at Tasks

Doing To or Doing For

vs. Doing With

Tasks• Approach from the front

• Use ‘face-to-face’ communication skills

• Make a connection

• Use name and/or light touch to focus attention

• Prepare and explain, verbal and visual cues

as needed

• Check for understanding and acceptance

Tasks (cont.)

• Present objects in proper orientation and

ready for use

• Begin with verbal cue

• Add visual if needed

Tasks (cont.)

• May need help with:

- Initiation

- Sequencing

- Problem solving

• Hand-under-hand technique

- Re-awakens “muscle memory”

- Ensures gentle approach

Wording for Choices• Open-ended question – when to use?

• Offer a list

• Offer choices one or two-at-a-time

• Simplify wording and add emphasis and visual

cues

• Look for non-verbal acceptance or dismissal

• Re-frame ‘refusals’ and ‘resistance’ as exercising

choice

• ‘How do they teach us??’

Appreciation and Self-Esteem

• ‘Can you please help me with this?’

• ‘Would you please hold this for me?’

• ‘What do you think about this?’

• Check for direction through steps of a task

• Give positive feedback and compliment (honestly)

• Give thanks and appreciation

• When all else fails, engage through every task

A Well-Being Approach to distress

General Approach:three “audits”

•Medical Audit (not always necessary)

•Environmental Audit

•*Experiential Audit*

Consider a medical evaluation when…

• There is an expression that is very unusual for the person

• There is an expression in conjunction with physical signs

or symptoms (low-grade fever, grimacing, change in

breathing, etc.)

• Other suggestion of discomfort

• A person is a bit more lethargic than usual

Medical considerations

• Pain

• Infection

• Drug reaction

• Other medical illnesses (heart failure, abdominal

problems, etc.)

Physical Discomfort• Does not have to be due to severe pain or injury

• May be seen during personal care or movement, and/or

after periods of immobility

• May be more prevalent later in the day

• Can see recent falls or signs of injury

Physical Discomfort (cont.)

• Untreated pain can be a cause of delirium

• Can be related to medication side effects

• Can be related to bowel/bladder needs

• Many people, even with advanced cognitive changes, can

still answer when asked about pain

• If unable to answer, use an observational scale such as

PAINAD

Pain Assessment in Advanced Dementia Scale (PAINAD)

Source: Warden V, Hurley AC, Volicer, L (2003). Development and psychometric evaluation of

the Pain Assessment in Advanced Dementia (PAINAD) scale. J Am Med Dir Assoc, 4(1), 9-15.

Environmental audit• Over- or under-stimulation

• Bowel bladder issues

• Hunger/thirst

• Environmental sounds

• Heat/Cold

• Interactions with others

• Getting ‘stuck’

Experiential audit• The Experiential Model teaches that we need to go deeper into the Domains of Well-Being and find out how they are being challenged or eroded.

• The Experiential Model states that distress is more likely

due to a person’s attempt to cope, problem-solve, or

communicate her/his needs.

• Are there aspects of well-being that the person is trying to

fulfill that we’re not satisfying, that may be leading to the

distress?

‘other eyes’Try this:

See what they see…

Hear what they

hear…

Be present.

Team exercise:

The Well-being approach to distress

Antipsychotic reduction: Some suggested guidelines

• Antipsychotic use is defined as: #Residents using antipsychotics

without a primary psychiatric diagnosis / Total number of residents

without a psych diagnosis

• Example: If there are 100 residents, and 20 take an antipsychotic, but

2 of them have a psych diagnosis, the rate is 20 – 2 / 100 – 2 = 18/98

= 18.4%

• Commonly approved uses: Schizophrenia, Huntington’s, Tourette’s,

*Psychosis due to bipolar disorder or major depressive episode

(*’Dementia with psychosis’ is not an approved indication)

Antipsychotics are not indicated for…

• Calling out, and other repetitive verbalisations

• Insomnia

• Attempts to stand, walk, or exit a door

• Expressions of anger or frustration

• Mild to moderate anxiety

• Nearly all cases of striking out during care

Expressions of suspicion do not constitute paranoia that

justifies antipsychotic treatment unless they are (a)

persistent and delusional, (b) not explainable by

environmental, relational, and/or nonverbal triggers, (c) not

amenable to reassurance or other approaches, and (d)

significantly interfere with the person’s health and well-

being.

‘Okay, Al…so when do you think antipsychotics can be used in dementia?’

Consider short-term use for four situations:

1) Severe distress, with ongoing potential for imminent

harm to self or others

2) ??Acute delirium with severe symptoms not amenable to

simply treating the underlying cause (2018 review—not

helpful in delirium)

Short-term indications (cont.)

3) Expressions suggesting the presence of true hallucinations or

delusions that are causing severe harm or distress and that are not

helped by other approaches

(Note: Many expressions that are labeled as ‘hallucinations’ or

‘delusions’ are actually (1) misinterpretation of one’s environment, or (2)

abnormal visual images caused by Lewy body dementia with damage to

the visual center of the brain—these do not respond well to antipsychotic

medications, and in the latter case, their use can be associated with

severe sedation and/or rigidity)

4)Distress causing dangerous interference with nutrition and hydration

And… Avoid ‘PRN’ Dosing!

• Often the episode and/or trigger is resolved before the

dose

is given or takes effect, and it therefore serves no purpose

• Having the pill available is a barrier to critical thinking

about

the context of the expression

• As with standing doses, the risk/benefit of the drug does

not favour its use

Suggested Prioritisation for Dose Reduction

1. Serious adverse effect from the drug (lethargy,

inadequate food and fluid intake, movement disorders,

etc.)

2. Inappropriate indication for the drug

3. A person whose distress persists unchanged since

starting the medication; such medication should be

deemed ineffective

4. A person who was started on the drug in the past, and

has not shown any distress for > 3 months while on the

medication

Prioritization (cont.)

5. A person started within proper guidelines who had one

episode of distress that has not recurred (in such cases,

the situation was probably short-lived and the resolution

was likely not related to the medication)

6. A person started within proper guidelines whose distress

has resolved

7. A person started within proper guidelines who still

exhibits distress, but for whom another care approach

has been started with some positive response

1Serious Drug Toxicity

• Stop immediately or taper within 24 – 28 hours

• Review past history and create a tentative plan for

any emerging distress

• Consider Well-Being Tool

2 & 3 Inappropriate Indication or Ineffective

• Start with care conference to create a proactive approach

• Use the Well-Being Tool

• Begin gradual dose reduction (GDR) by cutting total daily

dose by 1/4 - 1/3 (fewer doses or smaller pills)

• Monitor response and reconvene as needed

• Keep tapering by same proportion every 2 – 4 weeks

4, 5 &6No Ongoing Distress

• Review history, likelihood of re-emerging expressions

• Enrich care plan as needed

• Begin GDR by cutting total daily dose by 1/4 - 1/3 (fewer

doses or smaller pills)

• Monitor response and reconvene as needed

• Keep tapering by same proportion every 2 – 4 weeks

7Ongoing distress, Possibly Improved

• Use Well-Being Tool

• Enrich care plan as indicated

• Set a time to begin GDR, as it may likely be doing little in

this situation anyway

• Begin GDR by cutting total daily dose by 1/4 – 1/3 (either

fewer doses or smaller pills)

• Monitor response and reconvene as needed

• Keep tapering by same proportion every 2 – 4 weeks

If distress Seems to Increase While reducing

• Hold the medication at the current dose

• Do not increase unless there is imminent risk

• Hold another team meeting to determine underlying

causes and make adjustments in the care plan.

• Wait until the distress stabilises or resolves before

resuming the GDR (e.g., after 2-4 weeks)

If distress Recurs after Discontinuation

• Begin with a care conference and review of the current

situation and care plan

• Use or redo Well-Being Tool

• In most cases, it will be found that the drug was not the

definitive answer in the previous situation, and it will not

need to be started at this point.

And…Don’t forget…

Pain

Depression

Constipation and other chronic medical illness

Other Considerations

• At the beginning of the assessment and periodically

through the GDR, the full list of medications should be

examined to be sure that the person is not experiencing

distress due to other drug interactions or side effects.

• Use a similar degree of scrutiny and care planning before

starting anyone newly on an antipsychotic drug

Other Considerations (cont.)

• When a person moves into the community who is already

taking an antipsychotic drug, hold a team meeting,

investigate when and why the pill was started, and if there

is no official indication for the pill, consider proceeding as

per one the seven categories described above. (If there is

no urgent need to stop the pill, it is reasonable to wait a

few weeks until the team better knows the person before

starting a GDR.)

Action Planning time

Hard to get fruit – 1 year

Harder to reach (6 mos.)

Low hanging fruit (3 mos.)

Harvested fruit (Now)

Beenden• Andere Fragen?

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Vielen Dank!!! DrAlPower@gmail.com

www.alpower.net