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Dementia Care Without
Restraints: Think Critically
and Change Practices
Anthony Chicotel
Staff Attorney
California Advocates for Nursing Home Reform
This is Reggie and Cal
The Intro
 Behavioral challenges associated with dementia are
expression of need, not “symptoms.”
 Medicalizing the the problem means medicalizing the
response: 60% of nursing home residents receive a
psychoactive drug.
 A least medicating approach, based on relationships,
is superior for health, safety, and quality of life.
Drug Classes
Drugs Used to Change “Behaviors”:
1) Anti-Depressants (e.g. Zoloft, Celexa)
2) Hypnotics (e.g. Remeron, Ambien)
3) Anti-Anxieties (e.g. Ativan, Xanax)
4) Anti-Psychotics (e.g. Zyprexa, Risperdal, Seroquel,
Haldol)
5) Misc.: Depakote, Neudexta
Why Do We Give These Drugs to
People with Dementia?
We don’t know what else to do.
Antipsychotics: Risks Galore,
Including DEATH
 Side Effects: too many to name - strokes, falls,
dizziness,weakness, headache, tardive diskinesia
 Some side effects are the symptoms the drugs are
supposed to treat: agitation, restlessness, confusion,
delirium, cognitive decline, seizures
 Double risk of death for elderly with dementia (FDA
Black Box warning)
DART-AD Study
No. of Months on
Antipsychotic
Survival Rate (%) of
those Who Continued
to Receive
Antipsychotic
Survival Rate (%) of
those Receiving
Placebo
12
70
77
24
46
71
36
30
59
New Dementia Drug X
Benefits
Side Effects
 Relieves Pain
 Sedation
 Reduces Anxiety
 Reduced Activity
 Easier Sleeping
 Some Withdrawal
 Light Euphoria
when Discontinued
Dementia Drug X is Real
Define the Problem
 Care providers perceive explainable
actions/reactions of residents with dementia as a
“behavioral and psychological symptom of
dementia.”
 When behavior is a symptom, it becomes
medicalized. Instead of a human problem, it
becomes a medical problem necessitating
medical intervention.
Hallmarks of Dementia
 Memory Loss
 Confusion
 Loss of Ability to Communicate
So what does this mean?
This often means
 Loss with attendant sadness
 Decreased activity
 Discomfort
 Fear
 Less ability to meet immediate needs
 Less ability to engage help
Immeasurably exacerbated in an institutionalized or
congregate living setting
Think about it
 “Behaviors” are not symptoms of dementia - they are
the natural response to distress and unmet needs.
 What we are observing are behavioral and
psychological symptoms of being a person with lots of
confusion and no way to verbally communicate.
A crying baby
What do you do?
a) Give them drugs
or
b) Tend to their needs
and comfort them?
Why Psych Drugs Fail
 Psych drugs sedate – less activity, more falls, more
incontinence, more confusion
 Psych drugs do not resolve the underlying problem that
led to the behaviors, so problems worsen
 Sedation + Masking the Problem = Negative
Outcomes, including doubling the risk of death
A Different Approach: Least
Medicating
 Behavior is communication.
 Know the care recipient (relationships as the new
medicine).
 Meet them where they are.
Least Medicating Approach
(cont’d)
 Almost all behavior has a discernible cause – you have
to think it through.
 Team Approach: use staff, family, and experts to find
the right intervention.
 Agitation is easier to prevent than to treat.
 Drugs only as last resort
Comfort-focused Care
 Prophylactic Pain Management
 Culture Change components: liberalized diet,
personalized sleeping and showering schedules
 Active observation, notation, and collaboration
 Comfort as the goal of every experience
Relationships
 Our needs survive our ability to consider and convey
them
 Biological needs – food, shelter, activity
 Psychological needs – choice, control, connection
 Validation therapy, Music & Memory, activity programs
– what do they have in common?
 Knowing who they were and who they are and loving
them both
A New Standard of Care
 AHCA: These drugs don’t get to the heart of the reason for
the person’s actions.
 Leading Age: Antipsychotics rarely help and present
significant dangers.
 AMDA: I do not prescribe antipsychotic drugs for treatment of
agitation or other behaviors in patients with dementia.
 APA: Antipsychotics ought to be the last resort for dementia.
 Dr. Jonathan Evans: The use of these drugs represents a
failure.
Nursing Home Law Demands
Good Dementia Care
 Informed Consent
 No Unnecessary Drugs
 Chemical Restraints Prohibited
 Gradual Dose Reduction
This is Chemical Restraint
imposed for purposes of
discipline or
convenience, and not
required to treat the
resident's medical
symptoms (42 C.F.R.
Sec. 483.13(a))
Convenience: any
action by the facility to
control or manage a
resident’s behavior with
a lesser amount of
effort.
Neurologic Suppression is
ALWAYS the goal.
Informed Consent?
Informed Consent?
No Unnecessary Drugs
Inadequate Indications for Use:
http://www.cms.gov/manuals/Do
wnloads/som107ap_pp_guid
elines_ltcf.pdf (F-Tag 329,
42 CFR 483.25(l))
wandering; poor selfcare; restlessness;
impaired memory; mild
anxiety; insomnia;
unsociability;
inattention; fidgeting;
uncooperativeness;
behavior that is not
dangerous to others
Gradual Dose Reduction
Residents who use antipsychotic drugs receive gradual
dose reductions, and behavioral interventions, unless
clinically contraindicated. (42 CFR 483.25(l))
Law is Good, Enforcement
WEAK
Approximately 95% of federal deficiencies are “no harm”
Ojai Gardens
National Initiative to Improve
Dementia Care and Reduce
Antipsychotic Use
 Led by CMS, a collaborative education campaign to
reduce AP use in nursing homes has led to a 14%
reduction since 2012.
 In California, the reduction has been 16%.
One County’s Story
 “There’s a Problem” Symposium, March 2011
 “Comfort Care as the Alternative” Symposium, August
2011
 “Local Adopters Lead Other Providers” Symposium,
March 2013
 Local group of stakeholders meet bi-monthly, watch
statistics closely
 Next: training for doctors, focus on laggards
One County’s Results
 4th Quarter 2010 Nursing Home AP use: 19.07%
 2nd Q 2014: 13.57% (29% reduction)
 Antianxieties down 16%, Antidepressants down 13%,
and Hypnotics down 48%
Resources
1) https://www.nhqualitycampaign.org/files/Dementia_Car
e_Training_Crosswalk.pdf
2) Dementia Beyond Drugs
The CANHR Campaign
www.canhr.org/stop-drugging
Thank you for your attention!