Dementia-related behaviors:

Where do they come from? Can we prevent them?

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Disclosures – Soo Borson MD

• Co-Lead, BOLD Public Health Center of Excellence on Early Detection of Dementia
• Professor of Clinical Family Medicine, Keck USC School of Medicine; Professor Emerita of Geriatric Psychiatry, University of Washington
• Adjunct Researcher, Kaiser Permanente Southern California
• Dr. Borson receives research and program funding from the National Institute on Aging, the National Institute of Minority Health and Health Disparities, and the Centers for Disease Control; and honoraria from the American Geriatrics Society for her editorial duties with the Journal of the American Geriatrics Society; University of Wyoming for participation as hub faculty for its Geriatrics ECHO program; and Roche Genentech, Biogen, and MedScape for consultation on health care delivery for people living with Alzheimer’s disease and related dementias.
• There are no conflicts of interest pertinent to this presentation.
• Material in this presentation reflects the individual views of the presenter.

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Learning Objectives:

• Learn why behavior changes in dementia.
• Use a simple framework to help you understand what’s happening.
• Identify three ways to reduce the risk of behavioral crises.

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• Neurons shrink and have trouble talking to each other
• Control processes weaken – too much and too little activity
• Different dementia types affect the brain map differently

Dementia = Brain Failure

It starts with the brain: the most complex known object in the universe

-EO Wilson

…What was the person like before? _ Costa and McCrae, Saucier and Ostendorf

• Neurotic: irritable, insecure, emotionally reactive  
• Extroverted: sociable, unrestrained, assertive, adventurous
• Open to new experiences: intellectual, imaginative, creative, perceptive 
• Agreeable: warm, affectionate, gentle, generous, modest, humble
• Conscientious: orderly, decisive, consistent, reliable, industrious

- the “Big 5” personality traits and some of their common manifestations

And unhealed life experiences

• Adverse Childhood Experiences (ACES)
• Psychological trauma at any age
• Long-term mental, emotional, and psychological disorders�

These contribute to many chronic medical conditions.

They influence behavior in dementia – and may increase vulnerability to developing dementia through chronic stress biology.

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What are Adverse Childhood Experiences (ACEs)?

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• Abuse – mistreatment (physical, mental, political, emotional, sexual)
• Neglect – starvation (physical, emotional, political, mental, relational)
• Witnessed aggression/violence at home, in the community, in war

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Why talk about ACEs here?

• Often invisible but powerful causes of challenging behavior in dementia

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• Powerful contributors to poor lifetime physical and mental health
• Often invisible in adults

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And still more causes…

• Pain – acute, chronic, or both
• Physical mobility limitations
• Inadequate sleep, food, fluids
• Acute infection, illness, injury
• Relationship factors
• Caregiver communication – e.g. ‘elder speak’ (baby talk with older adults)
• Caregiver fatigue, negative emotions, unmet support needs, insufficient joy

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Meet Miriam

• 83 years old when I met her, long-term resident of a skilled nursing community
• Widowed in her 50’s, mother of a middle-aged daughter – no other family
• Trained as a lawyer in Russia
• Extensive history of trauma exposure
• Young teenager in WW I
• Young adult during Russian Revolution
• Holocaust refugee – WW II
• Worked as refugee/immigrant advocate after arriving in US

The problem

• Screams racist epithets, pushes, fights nursing interventions – won’t allow dressing changes, especially at night
• Daughter at wits’ end
• Staff avoid her (bare essentials)
• “Most hated patient in the nursing home”

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�What we’re aiming for�

“No-Crisis” Care

How to do it

• Assess systematically – see what’s obvious, search for what isn’t
• Accept what can’t be changed
• Look for what can change
• Consider roles – mine, yours, others’

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Miriam’s Difficulties – One by One�

• Cognition: moderate dementia – mainly vascular + some Alzheimer/?Lewy body
• Emotional/behavioral status: PTSD unmasked by dementia + painful leg ulcers (how?), chronic anxiety, depressed mood
• General medical and functional status: severe generalized ischemic vascular disease; bedbound; immobilized by strokes; intense pain with leg dressing changes
• Care partners: Daughter and NH staff stressed, frustrated, angry, afraid
• Health related social needs: chronic loneliness; no financial strain
• Health care framework: strict nursing assignments and schedules, management and nurse leaders at end of rope, willing to try anything

© Borson 2022

Behavioral Mitigation + Problem Prevention:�Stress Management for Everyone is the Key

https://www.acesaware.org/

Miriam’s Care Plan

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Thank you – keep talking!

NYUBOLDCenter@nyulangone.org

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http://bolddementiadetection.org/resources

Medication �Management of BPSD

Jamie Starks, MD

6/4/22

Disclosures

• No relevant financial or non-financial relationships to disclose
• Off-label use of medications will be briefly discussed (because there are no FDA-approved medications for BPSD*)

*BPSD: Behavioral and psychiatric symptoms of dementia

Learning Objectives

Attendees will be able to:

• List risks associated with medications used for behavioral and psychiatric symptoms of dementia (BPSD)
• Describe the role of medications for treatment of BPSD
• Identify indications for pharmacologic interventions for BPSD

• 88 y/o retired high school shop teacher with Alzheimer’s disease dementia and multiple recent admissions for behavioral concerns
• 8/14-8/17:
• Admitted from home due to disruptive behaviors in the neighborhood and “failure to thrive”
• Discharged back home with family to provide 24/7 supervision
• 8/17-8/23:
• Readmitted a 3 hours later after getting into an altercation with a neighbor
• Discharged to memory care ALF
• 9/5:
• Readmitted from ALF due to aggressive behaviors towards staff

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Psychotropic Meds on Admission:

• Olanzapine (antipsychotic)
• Melatonin

Case

• Behaviors:
• Irritability, labile mood, intermittent tearfulness
• Verbal and physical aggression towards staff
• Exit-seeking
• Paranoid delusions
• Anxious perseveration
• Over the next 4 months, behaviors worsened despite multiple medication trials:
• Escitalopram (antidepressant)
• Valproate (mood stabilizer)
• Risperidone (antipsychotic)
• Haloperidol (antipsychotic)
• Lorazepam (benzodiazepine)
• Trazodone (antidepressant/anxiolytic)

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Case

Causes of BPSD

• Can be categorized into factors relating to:
1. Patient
2. Caregiver
3. Environment

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Adapted from Kales HC, Gitlin LN, Lyketsos CG. BMJ 2015. 

BPSD Causes:�Patient Factors

• Neurocircuitry disruption
• Regional neurodegeneration
• Neurochemical alterations associated with neurodegeneration
• Dopamine 🡪 Delusions/hallucinations
• Serotonin 🡪 Depression, anxiety
• Sleep/wake disruption

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• Psychiatric comorbidities
• Increased incidence in neurodegenerative disorders
• Symptoms may be atypical

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Medications for BPSD

• Expectation:

• Reality:

Medications for BPSD

BPSD Management is Challenging!

• Complex causes
• Lots of guidelines about what NOT to do, not as much about what TO do
• No FDA-approved medications
• Lack of good evidence to guide treatment

Non-Pharmacologic vs Pharmacologic Treatments

• Most guidelines & experts recommend non-pharmacologic treatments as first-line interventions
• At least as effective than medications
• Behavioral meds have significant risks & adverse side effects

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• Challenges to non-pharmacologic interventions:
• Often more time-consuming and more work to implement
• Lack of provider education/training
• Methods are often counterintuitive and contrary to traditional nursing training
• Perceived lack of efficacy
• Results often less immediate

Reus, V.I.; et al. The American Psychiatric Association Practice Guideline on the Use of Antipsychotics to Treat Agitation or Psychosis in Patients with Dementia. Am. J. Psychiatry 2016, 173, 543–546.

• No FDA-approved medications for BPSD
• 2020 Annals of Internal Medicine systematic review & meta-analysis by Howard Fink, et al:

Pharmacologic Treatments

“Current data do not provide clear guidance on whether any prescription drugs improve BPSD out-comes in patients with clinical Alzheimer’s type dementia, let alone whether benefits outweigh harms, overall or in any patient sub-groups.”

Fink HA, Linskens EJ, MacDonald R, et al. Benefits and harms of prescription drugs and supplements for treatment of clinical Alzheimer-type dementia. A systematic review and meta-analysis. Ann Intern Med. 2020.

• Undesirable benefit/risk ratio
• FDA Black Box Warning

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• Long-term care standards require gradual dose reductions of antipsychotics and sedative/hypnotics (e.g. benzodiazepines)

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Antipsychotics

Reus, V.I.; et al. The American Psychiatric Association Practice Guideline on the Use of Antipsychotics to Treat Agitation or Psychosis in Patients with Dementia. Am. J. Psychiatry 2016, 173, 543–546.

Pharmacologic Treatments

• Can also make behaviors WORSE!
• Akathisia (antipsychotics)
• Paradoxical agitation (benzodiazepines)
• Confusion, delirium
• Sedation 🡪 disruption of sleep/wake cycle

• So are antipsychotics or other medications EVER indicated?
• Palliation of psychological distress
• Concept of “total pain”
• Safety of patient/others
• Meds should never be used for staff convenience!

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• Certain neuropsychiatric symptoms are more likely to respond to medications
• Psychosis (antipsychotics)
• Depression (antidepressants)
• Cholinesterase inhibitors often very effective for neuropsychiatric symptoms in Lewy body disease
• Sleep-wake dysregulation

Pharmacologic Treatments

• Trial & error often necessary
• Honest conversations with caregivers/POAs about risks/benefits are essential

Pharmacologic Treatments

Case Conclusion

• Medication trials:
1. Olanzapine (antipsychotic)
2. Added escitalopram (antidepressant)
3. Olanzapine 🡪 risperidone (antipsychotic)
4. Added valproate (mood stabilizer)
5. Lorazepam (benzodiazepine) 🡪 oversedation
6. Trazodone (antidepressant) 🡪 paradoxical agitation
7. Risperidone 🡪 haloperidol (antipsychotic)

Case

Case

• He got better!

• Non-pharmacologic interventions are first-line for BPSD
• Medications often have limited efficacy
• Most medications for BPSD have risks and significant potential for side effects (including worsening of behaviors!) – informed consent is essential
• Medications should target specific neuropsychiatric symptoms
• Trial & error often necessary
• Goal of medication treatments should be palliation of distress and/or patient/staff safety (NEVER for staff convenience!)

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Key Points

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Community Health Workers’ Perspectives�

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Strategies for successfully managing dementia- related behavioral issues

Caregiving for People with Memory Loss��May 19, 2022

What is a Community Health Worker? (CHW)

• Commonly called CHWs
• Trained, front-line public health professionals
• Community connections (language, culture, life experiences)
• Bridges care gap (health/social services) and community
• Creates access to health/community services and resources
• Provides culturally appropriate health education, information and outreach in various settings (homes, clinics, hospitals, �care centers, etc.)
• Advocates for inclusive and equitable healthcare for all

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Importance of Caregivers

• Caregiving is Crucial :

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• Promote overall happiness

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• Mental well-being

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CHW Strategies for Caregivers

• Recognize behaviors as a form of communication
• Major challenges:�
• Behaviors and personality changes
• Agitation/irritability
• Sleep (wakefulness/sleep disruption)
• Wandering
• Eating (too much/too little)
• Fearfulness/crying spells

Triggers: What’s Driving the Behavior?

• Assess the situation/behavior patterns
• Identify the causes: in the moment/progressive symptoms
• Environmental (unfamiliar surroundings, music, TV, voices, smells)
• Personal needs (hungry, thirsty, pain, bored)
• Disease progression-induced symptoms (wakefulness/sleep disruption)
• Historical driver/influencers (trauma, other chronic conditions)

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Behavior Management Tips

Person-centered approach

• Meet the person where they are. Be in the moment.
• Personal preference: Utilize the person’s likes to re-direct or �to get the person’s attention.
• Communication: Ask simple, answerable questions, use clear statements and calm voice.
• Listen with all your senses (eyes, ears and heart).
• Stress management (quietness, crafts, music, dancing, coffee, TV shows)
• When the going gets tough: Distract and re-direct!

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Other Considerations

• Biological effects on memory loss (pre-disposition)
• Co-morbidities (chronic health conditions, substance use disorders)
• Lack of understanding of the brain, diseases and disorders
• Historical: lack of trust, economic factors
• Cultural considerations (brain health, aging and/or cognitive conditions)
• Lifestyle behaviors (diet, exercise, sleep hygiene, etc.)

Caregiver Burnout Prevention � Self-Care

• Don’t forget to take care of yourself!
• Build a team(s) and delegate
• Family and friends
• Professional providers
• Community-based organization (CBOs)

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• When enlisting community support/care sharing, consider
• Cultural norms
• Biases/stigmas
• Economic factors

Key Take-Aways

• Caregiving is a huge responsibility
• Individualize the style of care
• Be supportive and encouraging
• Be aware of environmental factors (calm/familiar environment)
• Encourage regular routines
• Prioritize self-awareness and care (take breaks, socialize with friends, keep up with hobbies)
• Connect with others: Attend caregiver support group

Thank you!

Angela Fields, CHW, afields@trellisconnects.org / 612-402-0209��

• Community Health Worker
• Juniper program, Trellis
• MN CHW Alliance