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Dementia Beyond Drugs Supporting Well-Being for People with Changing Cognitive Abilities
G. Allen Power, MD, FACPDemenz Symposium
16 April, 2019
Perspectives
„Die einzig wahre Entdeckungsreise. . . wäre nicht, fremde Länder zu besuchen, sondern andere Augen zu haben, das Universum durch die Augen eines anderen zu sehen, von hundert anderen, um die hundert Universen zu sehen, die jeder von ihnen sieht, die jeder von ihnen ist. . . ”
- Marcel Proust
Meine Geschichte
My Entry into this Work:Reducing Antipsychotic
DrugsØ U.S. sales, (20002014): $5.4 billion
~$20 billion (60 million prescriptions) Ø #2 drug sold in the US in 2015 was Abilify
(aripiprazole): US$7.2BØ 29% of US prescriptions dispensed by
long-term care pharmacies in 2011Ø Overall, 14.6% of all people in US care
homes are taking antipsychotics—down
from (23.9%) at beginning of initiative in
2012Ø This 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%
THE “BIG SECRET”:
Antipsychotic overuse is not a residential care problem!
Antipsychotic overuse outside of residential care
Care home data can be tracked, so they get all the attention
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 nursing homes)
This pattern is likely true in other industrialised countries as well
Our approach to dementia reflects more universal societal attitudes
The ‘Pill Paradigm’
This comes from deep-seated societal patterns and beliefs:
- Stigma
- Ageism and able-ism
- Desire for the ‘quick fix’
- Relentless 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”
An 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”
Don’t 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 and 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.”
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
A New Primary Goal:
Enhance 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)
Advantages of Focusing on
Well-Being
Helping Restore Well-Being for People Living with Dementia
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 institutional system, the system 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.
Transformational Models of Care
Structural Operational
* Personal *
Checking the CowsWhy ‘Nonpharmacological
Interventions’ Do not Work!!
Why ‘Nonpharmacological Interventions’ Do not Work!
The typical “nonpharmacological intervention” is an attempt to provide person-centred 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
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 Strategy and Innovation Manager) – appreciative inquiry retreat with 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 per person over a month from 28 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 care homes
- Significant decreases in pressure sores, restraints, urinary catheters, and pain in homes with >80% dedicated staff Study 2: 3941 US care homes
- Significantly fewer survey deficiencies in several ‘quality of care/life’ categories in homes with >85% dedicated staffing
- Follow-up study also showed significantly lower care aide turnover and absenteeism
Two studies(Kunik, et al. 2010; Morgan, et al. 2013)
Factors leading to ‘aggressive behavior’
Both studies found a major factor to be a decrease in consistency and quality of staff-elder relationships
Operationalising 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,
Volunteerism (Meaning, Growth) Simple Pleasures (Joy)
A well-being approach can be used for both:
Ongoing support and care
Decoding distress
Filling the ‘Well-Being’ Glasses
The Key…
Turn your backs on the ‘behaviour’, and find the ‘ramps’
to well-being!
True Stories…
Angela Norman, DNP Arkansas Health Care
Foundation
Arkansas Health Care Foundation
Pilot study: Dr. Norman approached one organisation and asked to work with 4 homes who were struggling with antipsychotic use
She began to work with staff on enhancing well-being for all residents proactively and then shifting systems to support.
In 6 months, 3 out of 4 homes had a relative reduction of their antipsychotic rate of >60%, and increased staff satisfaction. All continue to improve, one now >80% relative reduction.
Angela: “I believe this proactive approach is the key. It has changed my practice!”
Arkansas (cont.)
Dr. Norman’s team took the Well-Being Approach to the 25 highest-prescribing homes in the state.
After six months, antipsychotics are reduced by a relative rate of 49% among these homes.
Team is supporting staff from ~100 homes across the state: Almost NO Geri-psych transfers in over 6 months!
Other states are asking Dr. Norman to come and teach the approach
RIA/Power to formally study approach in 2019
Dr. Richard Taylor
“People talk about person-centred care. But if the view of the person doesn't change, then centering on them actually makes it
worse.”
