Dementia Care Without Restraints: Think Critically

and Change Practices

Anthony ChicotelStaff AttorneyCalifornia Advocates for Nursing Home Reform

This is Reggie and Cal

The IntroBehavioral 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 ClassesDrugs 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 BoxBlack Box warning)

DART-AD StudyNo. 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 XBenefits

Relieves Pain

Reduces Anxiety

Easier Sleeping

Light Euphoria

Side Effects

Sedation

Reduced Activity

Some Withdrawal when Discontinued

Dementia Drug X is Real

Define the ProblemCare 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 meansLoss 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 themBiological needs – food, shelter, activityPsychological 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 CareAHCA: 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 Restraintimposed 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 DrugsInadequate Indications for

Use:

http://www.cms.gov/manuals/Downloads/som107ap_pp_guidelines_ltcf.pdf (F-Tag 329, 42 CFR 483.25(l))

wandering; poor self-care; 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_Care_Training_Crosswalk.pdf

2) Dementia Beyond Drugs

The CANHR Campaignwww.canhr.org/stop-drugging

Thank you for your attention!