Welcome

Agenda

May 8, 2026 8:00am-4:30pm

7:30-8:00:

8:00-8:10:

8:10-9:20:

9:20-10:30:

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10:30-10:45:

10:45-11:55:

11:55-1:05:

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1:05-1:50:

1:50-3:00:

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3:00-3:15:

3:15-4:25:

Check in & Breakfast Provided

Welcome to the Day

From First Contact to Fallout:

How Scams Unfold

Intergenerational Programming

in Action: Evidence, Outcomes,

and Implementation

Break & Visit Vendor Tables

When Life Changes: Navigating

the Transitions of Aging

Advances in Dementia Care:

Treatments, Brain Health, and

Caregiver Support in Northeast

Ohio

Lunch & Visit Vendor Tables

Navigating the Medical, Behavioral,

and Social Challenges to Complex

Care: A Multidisciplinary Approach

Break & Visit Vendor Tables

Breakout Sessions

• Death Doulas: Strengthening Support, Communication, and Person-Centered Care
• Who Speaks for Whom? Difficult Ethical Issues at the End of Life
• Demystifying Public Assistance: From HB1 Policy Shifts to Practical Strategies for SNAP and Medicaid

Please enjoy breakfast.

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We will begin at 8:00.

Thank You to our

Gold Sponsors

Thank You to our

Silver Sponsors

Thank You to our

Summit Sponsors

Thank You to our

Mature Sponsors

Thank You to our

Special Bar Association Sponsors

Thank You to our

Western Reserve Coalition Sponsors

Stark & Knoll, Co., LPA

Trina M. Carter, Attorney at Law

Summit County Clerk of Courts

Sprenger Healthcare

Assisting Hands Home Care

Majestic Care

Transitional Design

Home Instead - Summit & Medina Counties

County of Summit ADM Board

Welcome

• QR codes to:
• Check in AND out
• Access slides and

handouts

• Complete session

evaluations

• On slide, in program, visit

www.DHAD.org/events/2026-senior-summit-expo-and-conference, or

see someone at the check-in tables

• Attorneys: Akron Bar is handling your CLEs
• All other licensures: certificates will be emailed within 2 weeks
• SWs - your attendance will be entered into CE Broker
• Attend the breakout your registered for!

From First Contact to Fallout: How Scams Unfold

Greta Johnson

Devan Weckerly

Tania Nemer

Samantha Robinson

Chris Main

FROM FIRST CONTACT TO FALLOUT:

How Scams Unfold

SENIOR SUMMIT 2026

Welcome and Introductions

GRETA JOHNSON, DIRECTOR OF COMMUNICATIONS AND ASSISTANT CHIEF OF STAFF

BETTER BUSINESS BUREA:

NATIONAL AND REGIONAL TRENDS

DEVAN WECKERLY LAMBERT, DIRECTOR OF MARKETING

PROSECUTOR’S OFFICE &

THE LOCAL REALITY

TANIA NEMER, DEPUTY CHIEF CIVIL, TAX. CSEA

VICTIM PERSPECTIVE

CHRIS MAIN, LOCAL RESIDENT

VICTIM ADVOCATE

SAMANTHA ROBINSON, SUPERVISOR OF ADVOCACY SERVICES

What is trauma?

An event in which someone views their experience as physically or emotionally harmful or life threatening, and has lasting adverse effects on the individual’s level of functioning.

Amygdala

This is the brain's "alarm system“. During a traumatic event, it becomes hypersensitive, leading to persistent hypervigilance, emotional reactivity, and anxiety.

Prefrontal Cortex

This area is responsible for calming the amygdala. During a traumatic event, managing impulses is weakened, making it hard to regulate fear and rationalize situations.

Hippocampus

This area acts as the command center for memory and spatial navigation. Chronic cortisol exposure can damage the hippocampus, which struggles to contextualize memories, causing the brain to feel like the past trauma is happening in the present.

Impacts of Trauma

Falling victim to a scam can have devastating effects that go beyond financial loss.

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Physical Reactions

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• Sweating/Shivering
• Sleep disturbances
• High Startle Response
• Faintness
• Nausea
• Lower Immune Response
• Appetite/Digestive Changes
• Extreme/Persistent Fatigue
• Elevated Heartrate/Blood Pressure
• Somatic – Body Aches and Pains

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Cognitive Reactions

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• Difficulty Concentrating
• Racing Thoughts
• Self-Blame
• Difficulty Making Decisions
• Loss of Identity
• Memory Problems
• Distorted Sense of Time and Space
• Flashbacks/Intrusive Thoughts

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Behavioral Reactions

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• Restlessness
• Decrease in Activity
• Avoidance/Withdrawal
• High Risk Behaviors
• Substance Use/Abuse
• Difficulty with Expression
• Social/Relational Disturbances
• Apathy

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Existential Reactions

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• Dependance on Others
• Loss of Purpose
• Increased Cynicism
• Despair About Humanity
• Shifting of Priorities
• Loss of Trust
• Disruption of Personal Understanding of Values

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Emotional Reactions

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• Guilt
• Anxiety/Depression
• Grief
• Shame
• Lost Sense of Security
• Fear
• Embarrassment
• Denial
• Irritability/Hostility
• Anger
• Numbness/Detachment
• Mood Swings

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How can loved one's support Someone who has been targeted in a scam?

Falling victim to a scam can have devastating effects that go beyond financial loss.

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Plan for Diminished Capacity

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• Arrange medical evaluation if cognitive decline in suspected
• Organize important documents
• Work with assisted living community or nursing home
• Document everything
• Utilize trusted messengers
• Lower Immune Response

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Secure Information

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• Change passwords often
• Utilize two factor identification
• Utilize your financial institutions fraud/scam protections
• Freeze credit
• Regularly monitor accounts
• Memory Problems

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Warning Signs

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• Unusual bank account activity
• Sudden changes to wills, trusts, POAs
• Unexplained new “friends”
• May seem secretive, anxious, and/or frightened
• May receive a lot of mail/emails for sweepstakes, contests, or free medical equipment/supplies

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Build Trust

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• Approach with empathy and patience
• Help them report
• Maintain close connection
• Educate them on scam tactics
• Designate a safe word
• Check social media privacy settings
• Encourage them to seek medical/mental health treatment
• Anger

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Resources

Falling victim to a scam can have devastating effects that go beyond financial loss.

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Summit County Sheriff

53 University Ave, Akron, OH 44308

(330) 643-2181

sheriff.summitoh.net

Ohio Attorney General

30 E. Broad St., 14th Floor

Columbus, OH 43215

(800) 282-0515

ohioprotects.org

Adult Protective Services

Summit County Department of Job and Family Services

1180 S. Main Street, Akron, OH 44301

(330) 643-7217

summitdjfs.org

Federal Trade Commission

(877) 382-4357

reportfraud.ftc.gov

ftc.gov/exploredata

consumer.ftc.gov

Victim Assistance Program

137 South Main Street, Suite 300 Akron, OH 44308

24/7 Crisis Hotline (330) 376-0040

24/7 Web Chat victimassistanceprogram.org

BBB Scam Tracker

bbb.org/scamtracker/lookupscam

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Direction Home Akron Canton

Aging and Disability Resource Center

1550 Corporate Woods Parkway, Uniontown, Ohio 44685

(877) 770-5558

www.dhad.org

Pro Seniors Elder Law Legal Hotline

(800) 488-6070

VANTAGE Aging

2279 Romig Road; Akron, OH 44320

(330) 253-4597

Mental Health Support Hotline

Portage Path Behavioral Health

340 South Broadway Street, Akron, OH 44308

(330) 434-9144

portagepath.org

National Suicide and Crisis Lifeline

988 (Call or text)

McGregor PACE at Ohio Living Rockynol� 1275 W. Exchange St.� Akron OH 44313� 330.889.8660

TransUnion.com/credit-help

(888) 909-8872

Experian.com/help

(888) 397-3742

Equifax.com/personal/credit-report-services

(800) 685-1111

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Questions?

THANK

you!

Scan the QR code to complete

the evaluation

Intergenerational Programming in Action:

Evidence, Outcomes, and Implementation

Lauren Feyh

Intergenerational Programming in Action: �Evidence, Outcomes, and Implementation

Lauren Feyh, MNM, LNHA, ACC, CDP, CMDCP

Objectives

1. Impact of social isolation/loneliness  on older adult’s health
2. Defining Intergenerational
3. Exploring Evidence based practices of intergenerational programming, strategies, and approaches
4. Exploring Evidence based measures - quality outcomes
5. Discussing Real example, ARISE program of evidence-based practices for intergenerational programming - applied from start to finish 
6. Discuss how can this be applied to LTC/community based settings - how to get the buy in

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Isolation and Loneliness- An Epidemic

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A Coming of Age: Why it Matters

A Coming of Age: Demographic Shifts

Vespa, J., Medina, L., & Armstrong, D. M. (2018). Demographic Turning Points for the United States: Population Projections for 2020 to 2060 (pp. 25–1144). US Department of Commerce, Economics and Statistics Administration, US Census Bureau.

Intergenerational- a path forward

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Intergenerational Defined

• "Intergenerational practice aims to bring people together in purposeful, mutually beneficial activities which promote greater understanding and respect between generations and contributes to building more cohesive communities." (Beth Johnson Foundation, 2011).

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Beth Johnson Foundation (2011). A Guide to Intergenerational Practice. Stoke-on-Trent: Beth Johnson Foundation.

Background

• The goal for intergenerational (IG) opportunities is to support mutual benefit through interactions and relationships

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Objectives of IG programs:

• Four main categories: social, psychological/emotional, physical, and intellectual/cognitive.

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Evidence-based IG elements

• Evidence-based IG practices are sought by practitioners interested in the potential value of these programs.

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Making the Case

• Intergenerational programs have led the way to reduce ageism and age discrimination among young and old alike (Burnes et al., 2019; Gonzales et al., 2010; Rubin et al., 2015)
• Research shows people of color, as well as individuals from lower socioeconomic statuses report greater psychological, cognitive, social and academic outcomes compared to their counterparts (McBride et al., 2011; Morrow-Howell et al., 2008)

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Utilizing Evidence Based Measures

• Validated Outcomes
• Common measures:
• Self Efficacy
• Empathy
• Aging Semantic (attitudes)
• Generativity
• Loneliness
• Self Rated Health

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• Why? Funders, Shareholders, Impact

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ARISE Program- from development to implementation

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Team Effort

Timeline

• Spring 2018: OSU students
• Summer 2019: Get WISE

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• 2023: Pilot program, one location
• 2024: Two locations, more participants, awards/accolades:
• Program of Distinction from Generations United
• Human Kindness Prize from The Columbus Foundation
• 2025: One location, large group, funded

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Methods

Methods

• 5 weeks in Summer
• Focused on storytelling

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Participants:

• Teens from central Ohio
• Undergrad volunteers
• Older adults

Methods

Program was based in contact theory

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Contact between members of disparate groups can reduce negative attitudes and generate positive attitudinal change

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• Undergrads mentored teens
• Purposeful pairing

Methods

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Pre-Test/Post-Test: Quantitative Measures

Methods: Training

Before the start of the ARISE program…

Teens and mentors attended two training sessions at the Ohio Theatre including:

• Own experiences with arts
• Interacting with older adults
• Impacts of ageism within society and arts
• Importance of building IG relationships

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Tasked with cultivating a performance that encompasses skills and lessons learned

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Methods: Novelty of Content and Structure

Discussion

• The ARISE program, with its focus on storytelling, was an opportunity for social interaction and connection.

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Positive results from participants:

• Improved mental health
• More positive perceptions of other generations and of aging
• Comfort in the arts

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Lessons �Learned

How to apply Intergenerational to Long-term Care?

• Establish community partnerships/resources
• Align with warranted outcomes- QAPI
• Participant driven-design
• Embed in activities
• Focus as “non-pharmaceutical intervention”
• Establish roles
• Align with Section F/PELI

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Example Case Study

You saw higher incidences of dehydration in summer months

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Decide to develop the following: Intergenerational cooking program

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• Recruit your dietitian, RD students at local university, and residents
• Have RD/students Develop hydration activities
• Create needs assessment- ask residents what they would like to see
• Pair residents up with RD students to help cook, build relationships
• Outcomes- seeing reduction in dehydration, improved wellness, increased social engagement

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• Buy in: Reference Policies, Quality measures, and Federal and State Regulations

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Other IG programs focused in LTC

• Opening Minds Through Art
• The Legacy Project
• Perfect Pair
• Day by Day Project

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Handouts

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Evaluation Toolkit: www.gu.org/resources/intergenerational-evaluation-toolkit/

Making the Case: www.gu.org/resources/making-the-case-for-intergenerational-programs/

Shared Sites – Evidence Based Practices: www.gu.org/resources/intergenerational-shared-sites-fact-sheet/

ARISE Program: www.capa.com/arise/

Thank you!�

Questions? Email Lauren.feyh@osumc.edu

Want to learn about GrowIN – Intergenerational Community Programming? www.growin-ohio.org or visit us on socials (@GrowINCBUS)

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Scan QR code to

complete the evaluation

Grab a snack and

visit our vendors

We will return at 10:45

When Life Changes: Navigating the Transitions of

Aging

Donna Barrett

Joanna Ripple

Tina White

Nicole Hoover

Darrin Grella

Transitions of Care from Hospital to Home

Donna Barrett, MSW, LSW

Summit County Public Health

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Disclaimer

• This presentation is a combination of information developed by the U.S. Department of Health and Human Services, Health Resources and Services Administration, the Center for Health and Social Care Integration at Rush University, and Summit County Public Health.

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• This program is supported by a grant (90ADPI0128-01-00) from the U.S. Department of Health and Human Services, Administration for Community Living. The contents are those of the author (s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.

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Administration for Community Living Alzheimer’s Dementia Program Initiative for Communities�

• Improve communities dementia capability
• Partners
• DHAC, Summa Health Center, Ohio State University, Benjamin Rose Institute on Aging, NEOMED GWEP, Summit DD
• Gaps
• Individuals living alone with dementia
• Individuals with IDD and dementia
• Family Caregivers
• Objectives
• Activities

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Introduction to Transitions

Transitional care encompasses those actions designed to ensure coordination and continuity of health care as patients transfer between location and level of care (Coleman & Boult, 2003).

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• PLwD have frequent transitions the most common are:
• Transitions from home to hospital
• Hospital to home
• Home to and from the emergency department
• SNF

Common Reasons for Hospitalization or �Re-hospitalization for PLwD�

• Many medical reasons necessitate hospitalization for PLwD.
• Falls, UTI, Comorbidity, Seizures Behavioral and Psychological symptoms, Care partner Burnout.

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• Risks for re-hospitalization for PLwD include poor communication and lack of understanding or adherence with the discharge instructions,

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• Contributing factors for re-hospitalization may include medication mismanagement, mismanagement of medical care, and care partner lack of understanding regarding dementia and limitations of the capacity of persons living with dementia.

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Transitions of Care Models

• Based on a model from Center for Health and Social Care Integration (CHaSCI) at Rush University
• An evidence based transitions program shown to result in 20% less fewer readmissions
• Uses social workers to provide care management to supports adults with medical and social needs as they transition home for the hospital
• Participants had increased primary care engagement within 30 days of hospital discharge

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SCPH BRIDGES Program�

• Focus on patients living with or suspected of having dementia, who are transitioning from the hospital to home.

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• Eligibility:
• Individuals with known or suspected dementia, including:
• Individuals with Intellectual Developmental Disabilities
• Care partners/caregivers
• Older adults living alone

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Referral Process

• Summa Social Workers and Case managers will Identify patient/caregiver based on eligibility criteria

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• Refer to SCPH Senior and Adult Services
• Referral Form (check box)
• BRIDGES TC Program
• BRI Care Consultation

Bridges and Assessment Process

See patient in the hospital setting if possible

Schedule a home visit to begin the assessment process and review discharge instructions

Confirm or assist with scheduling PCP appointment

Review medication and determine if patient has prescribed medication

Contact medical provider as needed to clarify, order refills

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Bridges and Assessment Process

• Assess for additional issues and confirm supports already in place
• i.e. family support, AAA, HDM
• Make referrals and/or refer to community and health care resources
• Develop patient/client centered plan of care
• Follow-up with client and or caregiver to discuss status of plan by phone (minimum of three contacts)
• Discharge
• Refer caregiver to BRI Care Consultation for coaching and mentoring support

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Contact and Referral Information

Donna Barrett, MSW, LSW

Summit County Public Health

330-926-5650

dbarrett@schd.org

Senior and Adult Services

330-926-5650

seniorservices.org

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Transitioning Seniors

Assisted Living Navigators, LLC

FREE Senior Living Placement Services

Joanna Ripple

Founder & CEO

Assisted Living Navigators, LLC

Licensed Social Worker

Certified Dementia Practitioner

Objectives / Agenda

Identify Safety Concerns at Home

• Navigating flights of stairs
• Meal preparation and nutrition management
• Medication management
• Assistance with activities of daily living (ADLs)
• Unhealthy or absent caregiver support
• Unsafe living conditions
• Difficulty managing finances
• Cognitive decline

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Recognize Signs that Extended Care is Needed

• Community resources have been exhausted
• Repeated falls
• Frequent hospitalizations or rehabilitation
• New or progressing diagnoses (e.g., dementia, Parkinson’s disease)
• Worsening or unmanaged chronic illness
• Declining ability to manage daily activities safely
• Caregiver burnout or inability to meet care needs
• Socialization with peers

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Understanding the Transition to Extended Care

Coordinating the Transition Process

• Coordinating medical paperwork to facility
• Continuity of care between health care agencies
• Selecting personal items, furnishings, and clothing
• Arranging movers
• Transporting senior to facility

How to Support Seniors & Families Through Change

• Managing conflict among family members
• Validating fears
• Recognizing multiple losses / grief
• Adjusting to changes in independence
• Grieving relationships and familiar roles
• Letting go of the home environment
• Unable to drive
• Failing health & declining cognition
• Encouraging realistic expectations
• Adjusting to the "new normal"

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Questions?

• Joanna@AssistedLivingNavigators.com
• 330-554-2757
• www.assistedlivingnavigators.com
• Assisted Living Navigators, LLC
• @assistedlivingnavigators

Moving Clients Forward�Faster, Smoother, With Less Stress!

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Tina White

Senior Real Estate Specialist

Who This Is For…….

The Problem We All Face

Reframing Real Estate

Your Partner in Transition

Solutions That Simplify Transitions

• Traditional listings
• As-is sales
• Off-market opportunities
• Customized strategies

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Speed Without Sacrificing Value

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• Balance timeline, condition, financial outcome
• Guide families to best-fit solutions

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Vendor Network Advantage

• Cleanouts

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• Repairs

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• Estate sales

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• Movers & organizers

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• You don’t manage it

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For Attorneys

For Social Workers

What Makes Me Different

Thank You!

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Tina White

Senior Real Estate Specialist

Tina.white@exprealty.com

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330-388-7721

www.tinawhite.exprealty.com

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The Human Side of Transitions: The Role of a Death Doula

Overwhelmed during transitions

Difficult/unspoken conversations

Caregiver burnout

Emotional isolation

Where Families Still Struggle

WHAT I DO AS A DEATH DOULA

Emotional support

Presence and companionship

Guidance through conversations

Legacy work

Family support before and after passing

All of this support is outside of your clinical/medical care that you are receiving.

Transitioning into LTC

Navigating family communication

CONNECTING TO MY OTHER PANELISTS

After-death support to loved ones

Impact of a Holistic Support

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• Reduces anxiety and the feeling of being overwhelmed
• Improves family communication
• Supports healthier grieving
• Creates meaningful end-of-life experiences
• Allows for the ability for the family to be more present and focused during all of the transitions – whether it’s the transition to LTC, selling the home, or simply being “there”.

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YOU DON’T HAVE TO NAVIGATE ALL OF THESE TRANSITIONS ALONE�

You don’t have to face this season alone.

Whether you’re planning ahead, caring for a loved one, or simply seeking peace around the topic of death, compassionate support is available.

Book a consultation

Send a message to Nicole@deathdoulanicole.com

or call 330-714-0182

Beyond Goodbye

Preparing families for what comes next

Ben Walkley

No two parties will experience grief the same way.

Step 1: Identify

Do it Yourselfer

Procrastinator

Legacy Minded One

Step 2: Respond

Balance Emotion/Grief vs. Practicality

Engage Professionals

Who’s in Charge?

Find Assets

Probate or

Pay the Bills?

Transfer Assets

Identities

Independent

Cost-Conscious

Resourceful

Self-Motivated

The Do it Yourselfer

Sometimes Stubborn

What they get right

Filed a Transfer on Death (TOD)

Added Beneficiaries

Online Will

Passwords

What they might miss

Who’s in Charge?

Funeral Costs?

Mortgage?

List of Assets?

Let’s talk about

the Bickley’s

Jenny

and

Sean

Identities

Avoidance

Perfectionism

Disorganization

Difficulty Prioritizing

The Procrastinator

Easily Overwhelmed

What they get right

Important (yet disorganized) financial papers

Available Cash (frozen, but it’s there)

Printed Will

(Almost) Paid Bills

What they might miss

Next of Kin?

Assets?

Paying the Bills?

Who’s in Charge?

Let’s talk about

the Williams’

Nancy

and

Jim

Identities

Pragmatic

Foresighted

Responsible

Proactive

The Legacy Minded One

Intentional

What they get right

Estate Planning

Knows Who Will be in Charge

List of Contacts

List of Assets

Binder of details

What they might miss

Unforseen items

Questions?

Thank You!

Scan to complete the evaluation.

Advances in

Care:

Treatments, Brain Health, and Caregiver Support in Northeast Ohio

Laura Strader

Dr. Cynthia Balina

Dr. Jagan Pillai

www.alz.org/hello

Advances in Dementia Care�Treatments, Brain Health, and Caregiver Support in NE Ohio

There are 236,200 Ohioans 65+ living with Alzheimer’s. (2020)

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State average: 11.3%

Summit County: 11.5%

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490,000 caregivers in Ohio are providing 705M hours of unpaid care.

Populations at Higher Risk

Black Americans are about twice as likely as White Americans to have Alzheimer’s or another dementia.

Hispanic Americans are one and a half times as likely to have the disease as White Americans.

Almost two-thirds of Americans living with Alzheimer’s are women.

2X

Early Detection and Treatment

Early detection is important, pay attention to any changes in memory, thinking or behavior that you notice in yourself or someone else.

There are treatments that can change disease progression, and drug and non-drug options that may help treat symptoms. Talk to your doctor to learn more about treatment options.

How is Alzheimer’s Currently Diagnosed?

There is no single test that can determine if a person is living with Alzheimer’s disease or another dementia.

Doctors use a combination of diagnostic tools combined with medical history to make an accurate diagnosis.

Neurological �Exam

What is a Biomarker?

A biomarker is a biological marker that measures change.

Uses of biomarkers in �Alzheimer’s disease include:

Diagnostic: used to determine diagnosis

Enrichment: used to determine entry into a clinical trial

Prognostic: used to determine course of illness

Predictive: used to track outcomes and side �effects of treatments

Biomarkers are reliable predictors and indicators of disease and disease progression.

For example:

• Glucose is a biomarker for insulin resistance and diabetes.
• Cholesterol is a biomarker for heart disease

Biomarkers�A New Frontier in Alzheimer’s Detection, Diagnosis and Research

Cerebrospinal fluid (CSF) analysis can use to detect amyloid in the CSF (taken by a lumbar puncture), which can be predictive of changes in the brain.

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There are several emerging blood tests on the market that can indicate presence of Alzheimer’s markers years before symptoms emerge.

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Blood tests for Alzheimer’s should be prescribed by a doctor and followed by other methods of diagnosis.

Positron emission tomography (PET) scan results aid doctors in diagnosing and treating memory conditions. There are FDA approved PET scans that measure amyloid and tau.

Magnetic Resonance Imaging (MRI) can help doctors rule out other symptoms that may be causing dementia symptoms, as well as track treatment side effects.

Other emerging biomarkers include:

• examining skin and saliva to indicate early biological changes in the brain
• retinal imaging

which show promise to be low cost, accessible detection methods for Alzheimer’s.

Research Roundup

Identifying New Biomarkers

Standardizing Biomarkers

Bringing New Tests to Doctors’ Offices

• In addition to amyloid and tau — two key hallmarks in Alzheimer's disease — researchers are exploring emerging markers of cell death, inflammation and vascular related changes.

• Alzheimer’s Association leads the Global Biomarker Standardization Consortium (GBSC), which conducts studies that aim to standardize use of fluid biomarkers across populations.

• As new biomarkers reach doctor’s offices, the Alzheimer’s Association publishes recommendations and guidance for doctors for use of imaging, fluid and other diagnostic biomarkers for Alzheimer’s disease.

These programs provide a strategy to determine the most valuable tests that can be used to detect, diagnose and inform treatment for individuals with Alzheimer’s and other dementia.

Take Action!

• Simple blood tests can detect Alzheimer’s before symptoms appear — but a legal barrier prevents Medicare from covering them.

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• This is our “mammogram moment.” Just as routine screening transformed breast cancer outcomes, the bipartisan ASAP Act will make early detection the standard for Alzheimer’s.

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• Your story moves Congress. Contact your members and share why early detection matters!

Act Now: Support the ASAP Act

Congress can pass this essential bill — but only with your voice

Treatments for Alzheimer’s

While there's currently no cure for Alzheimer’s, there are treatments that can change disease progression, and drug and non-drug options that may help treat symptoms. Talk to your doctor to learn more about treatment options. Learn more at alz.org/treatments.

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Drug and non-drugs options are available that may help treat symptoms, such as memory loss and confusion.

Everyone experiences Alzheimer’s differently, treatments work in varying degrees and are not effective for everyone.

New treatments are available that slow disease progression for those in the earliest stages.

We all deserve a life with the healthiest brain possible.

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We can all take actions to help protect our brain health.

Risks to Brain Health

In most cases, Alzheimer’s is the result of complex interactions across multiple factors.

Non-modifiable�Ones we cannot change

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• Age
• Genetics
• Family history

Modifiable

Ones we can change!

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• Certain health conditions
• Health behaviors

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Protect your head

Be smoke-free

Get moving

Challenge your mind

Control your blood pressure

Manage diabetes

Sleep well

Stay in school

Eat right

Maintain a healthy weight

The first large-scale, randomized controlled trial in the U.S. to evaluate whether addressing several lifestyle factors at the same time – diet, exercise, cognitive stimulation, and heart health – can protect cognitive function in older adults at increased risk for cognitive decline.

THE U.S. POINTER BRAIN HEALTH RECIPE*

*Participants followed either a self-guided or structured lifestyle program. The two interventions both focused on the same lifestyle domains, but differed in structure, accountability and support provided.

About the Alzheimer's Association

The Alzheimer’s Association leads the way to end Alzheimer’s and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support.

Our vision is a world without Alzheimer’s and all other dementia^®.

24/7 Helpline

The Alzheimer’s Association 24/7 Helpline (800.272.3900) is a free service offering confidential information and support for people living with dementia, caregivers, families and the public.

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Free Education and Support

The Association offers robust information, education and support both in person and online, and helps to connect individuals with resources in the community.

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ALZNavigator

Just answer a few questions about your situation and ALZNavigator will guide you to the resources and tools you need today and throughout each step of the disease — all in one place. Whether you're a caregiver, a person living with dementia, or someone concerned about memory loss, find the support you need.

Support, guidance and connection for newly diagnosed people and care partners – �all in one app

Free mobile app for newly diagnosed individuals and care partners

Provides personalized guidance, trusted resources and local connections

Helps users understand their diagnosis, stay independent and plan for the future

Connects users to their local Alzheimer’s Association chapter for programs and support

Built with input from people living with dementia and care partners

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Walking With Patients and Families: Dementia Care as it is Today

Cynthia Balina M.D.

Chief Medical Officer

McGregor Program for All-inclusive Care for the Elderly (PACE)

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• No Disclosures

Objectives:

• What are the current treatment and diagnostic options for dementia?

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• What is happening in NE Ohio surrounding brain health?

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• What resources are available for caregivers, professionals, and individuals living with dementia?

Historical Views and Treatments of Dementia

Dementia =

Major Neurocognitive Disorder”

• Roots of “Dementia” is Latin, meaning “away from” + “mind”

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• DSM-5 (2013) introduces a new diagnostic term, “Major Neurocognitive Disorder”

As a primary care Geriatrician,

what does dementia care look like today ?

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• Evaluate Needs

As a primary care Geriatrician,

what does dementia care look like today ?

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• Evaluate Needs
• Anticipate Progression

As a primary care Geriatrician,

what does dementia care look like today ?

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• Evaluate Needs
• Anticipates Progression
• Interdisciplinary

As a primary care Geriatrician,

what does dementia care look like today ?

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• Evaluate Needs
• Anticipates Progression
• Interdisciplinary
• Person Centered

Dementia Care starts with an assessment

• Psychological
• Mood and Behavior
• Social
• Living situation
• Caregiver availability
• Isolation
• Financial strain
• Access to care
• Elder abuse or neglect ?

• Medical
• Chronic Conditions, falls, frailty, pain
• Functional
• Activities of Daily Living
• Instrumental Activities of Daily Living
• Cognitive
• Dementia Staging
• Decision making capacity
• Impact on function

Dementia care is Predictable.

1. Screen for loss of function
2. Monitor for changes in behavior
3. Establish Goals of Care

Monitor for changes in behavior�

• Repetitive Behaviors, Pacing, Wandering, Aggression
• Sleep and Appetite disturbances
• Paranoia, Delusions, Hallucinations
• Yelling, Repetitive Speech or Repetitive Questions
• Depression, Apathy, Anxiety

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Changes in behavior are expected�

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• 97 % of community – dwelling persons with dementia will experience dementia related behaviors at some point in the disease process
• Most common: depression, delusions, apathy
• 30% : fidgeting, repetitive behaviors, wandering

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Why Dementia-Related Behaviors Occur

Neurological Causes

Dementia-related behaviors stem from brain changes that impair impulse control and emotional regulation.

Behavior as Communication

Behaviors express unmet needs like fear, pain, or confusion when clear communication is lost.

Impact of Stress and Environment

Stressful or unfamiliar settings intensify confusion and fear, triggering challenging behaviors.

Emotional Awareness Retained

Despite cognitive decline, individuals often remember emotional impacts of interactions.

Treating Dementia-Related Behaviors

• Treat underlying triggers
• Provide routine
• Limit medications
• NMDA Receptor Antagonists (memantine)
• Acetylcholinesterase Inhibitor (donepezil, rivastigmine, galantamine)
• Dextromethophan-buproprion, Svorexant

Goals of Care

• Living Will, DPOAHC, Code Status
• “What Matters”
• Clinical Ethics Framework

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Dementia care is Interdisciplinary.

Program Essentials

• PACE enrollment criteria:
• Must meet nursing home level of care
• 55 years or older
• Live in the service area
• Living safely in the community at the time of enrollment
• Cannot be living in institutional setting*
• Ohio nursing home level of care criteria:
• Requires 24 hour supervision,
• OR 2) dependent in IADLs plus assistance in 1 ADL plus medication management,
• OR 3) dependent in IADLs plus assistance in 2 or more ADLs

McGregor PACE Services

156

McGregor PACE �Clinical�Services

157

5 Centers Across 3 Counties

Dementia care is Person Centered.

The Gaps Today

• Late diagnosis
• Fragmented care
• Caregiver strain
• Limited access to resources
• Access variable by geography

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As a primary care Geriatrician,

what does dementia care look like today ?

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• Evaluate Needs
• Anticipate Progression
• Interdisciplinary
• Person Centered
• Treatable

References

• Steinberg M, Shao H, Zandi P, Lyketsos CG, Welsh-Bohmer KA, Norton MC, Breitner JC, Steffens DC, Tschanz JT., Cache County Investigators. Point and 5-year period prevalence of neuropsychiatric symptoms in dementia: the Cache County Study. Int J Geriatr Psychiatry. 2008 Feb;23(2):170-7. [PMC free article] [PubMed]

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Thank You

Emerging Path in the Diagnosis and Management �of Alzheimer’s Disease and other Dementias

Jagan Pillai MD PhD

Director, Center for Brain Health

Director, Cleveland Alzheimer's Disease Research Center

The Iversen Family Endowed Chair in Alzheimer's Disease Research

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Overview

Year 2030

• 1 in 8 will be > 65 yrs in the world

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• 1 in 5 will be > 65 yrs in the US (20%)

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Dementia

Dementia is not a phenomenon of normal aging

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• A progressive and sustained decline in cognitive ability from a previously established level

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• Interferes with activities of daily living (ADL)

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• Involves at least 2 cognitive domains

(memory, language, judgement, visuospatial or complex motor dexterity)

alzheimercalgary.ca

Stages of Alzheimer's Disease

Tousi 2023

Nature Reviews Neurology volume 9, pages371–381 (2013)

Mild Cognitive Impairment

Performance in one or more cognitive domains that is lower than would be expected for the patient’s age and educational background.

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A decline in performance is also often evident over time

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Does not specify etiology

Changes in the brain are seen upto �18 years prior to symptom onset in AD

Tousi 2023

N Engl J Med 2024; 390:712-722

Cerebrospinal fluid biomarker in autopsy confirmed AD subjects

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• AD

O Normal

(Shaw et al, 2009)

Tau

Pg/ml

Aβ42 Pg/ml

AD Biomarker: CSF

t-tau/Aβ_1-42 ratio

Sensitivity 85.7%

Specificity 84.6%

CSF from Lumbar puncture

Blood tests for Alzheimer's disease

JAMA Neurol.doi:10.1001/jamaneurol.2023.5319

Currently used for

• Screening (not for final diagnosis)
• Used in research settings

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• Renal Function
• BMI
• Medical co-morbidities
• Mixed pathology

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Plasma ptau 217, ptau 181, Aβ42/40 ratio

Normal

MCI due to AD

AD dementia

AD Biomarker: Hippocampal atrophy

Jack et al, 2010

In patients with Alzheimer disease and mild dementia,

sensitivity was 77%, and specificity, 80%

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(Jack et al, 1997)

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Mild Alzheimer disease may be more difficult to detect than moderate or severe disease

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FDG PET is more sensitive than hippocampal atrophy and CSF t-tau/Aβ_1-42 ratio But less specific than them both for AD

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Klunk et al. (2004)

Biomarker: FDG PET

Sensitivity 94%

Specificity 73%

(Salmon et al, 1996)

Normal

MCI due to AD

AD dementia

Biomarker: Amyloid PET

(Jack et al, 2010)

Florbetapir F 18: FDA approved in April 2012

Sensitivity: 92% Specificity 100% at 2 years prior to autopsy (Clark et al, 2012)

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AD Biomarkers helpful to evaluate�other neurodegenerative conditions

• Fronto-temporal lobar degeneration
• Vascular dementia
• LATE (Limbic-predominant age-related TDP-43 encephalopathy)
• Autoimmune encephalopathies

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Frontotemporal dementia (FTD)�

Dementia with Lewy Bodies

Dementia with

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Cognitive fluctuations

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Parkinsonian changes

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Visual Hallucinations

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REM sleep behavior changes

Dementia with Lewy Bodies

Alpha-synuclein Biomarkers

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Seed amplification assay (SAA) for

CSF,

Skin

Trends in Biotechnology, 2024; 42, 829-841, NIH/PDBP

CSF from Lumbar puncture

Lancet 2020. 396, 10248,p413-446

Life course of dementia

risk factors

Life course of

dementia

risk factors

Lancet 2020. 396, 10248,p413-446

Life course of dementia

risk factors

Life course of

dementia

risk factors

Cleveland Alzheimer's Disease Research Center

The only ADRC in Ohio

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Funded in 2019

Cleveland Alzheimer’s Disease Research Center

What does the CADRC do

Over 400 participants take part in it so far

Now Recruiting: People with MCI or dementia

People with family history of more than one parent/sibling with dementia

• Understand why each person has a different path

• Find ways to help people most in need

From Individual Stories to Personalized Tests &� Therapies in Dementia

Tousi 2023

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• . 2023;10(3):362-377. 

Cummings et al; J Prev Alzheimers dis 2023

APOE Gene & AD Risk�

The apolipoprotein E (APOE) gene plays a role in lipid transport and brain repair.

Three common alleles: ε2, ε3, ε4

• ε4 allele → strongest genetic risk factor for late-onset AD
• 1 copy (ε3/ε4): ~2–3× increased risk
• 2 copies (ε4/ε4): ~8–12× increased risk
• ε2 allele → may be protective

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• Not deterministic: many ε4 carriers never develop AD

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Clinical Implications

• Influences age of onset more than absolute certainty
• Relevant in research, risk stratification, and assessing risk in anti-amyloid therapy side effects

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ARIA- H (Hemorrhage)

• Hemosiderin deposits on the surface of brain
• Curvilinear low intensities on GRE/ T2 MRI or SWI sequence that lie adjacent to the surface of brain
• Attributed to deposition of iron in the form of hemosiderin. Represent residua of a leakage of blood from a vessel into the adjacent subarachnoid space or the peri adventitial compartment 
• Seen in 1.4% of people >69

Superficial siderosis

• Hemosiderin deposits in the brain parenchyma
• Typically manifests as a focal (<10 mm), round, very low intensity lesion in the brain parenchyma, detected on GRE/T2 MRI or SWI
• Attributed to residua of a small leakage of blood from a vessel into adjacent tissue.
• Seen in 9.8% of population

Micro-Hemorrhages

Leakage of heme products

Tousi 2023

Sperling R. Alzheimers Dement 2011

GRE

SWI

Aria- e (Edema)

• FLAIR images
• Increased MR signal in multiple regions of the right hemisphere affecting gray matter.

Gray Matter

• FLAIR images
• Increased MR signal in multiple regions of the right hemisphere affecting white matter.

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White Matter

• FLAIR images
• Increased MR signal in sulci, Effusion of proteinaceous fluid from meningeal vessels tracking in the leptomeninges and sulcal spaces.

Sulci

Leakage of intravascular fluid and proteins (edema) into the parenchyma or effusion into sulcal space.

Tousi 2023

Sperling R. Alzheimers Dement 2011

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Signal Hyperintensity on FLAIR or other T2 weighted sequences in the parenchyma or sulcal area

Baseline vasogenic edema in AD patients without any therapy is <0.1%

Both subtypes are transient.

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The risk of ARIA-E ( Edema) in relation to ApoE4 genetic status in lecanemab �

No ApoE4: 5.4%

≃1 out 20

• Two ApoE4: 32.6%
• ≃ 1 out of 3

Tousi 2023

Placebo 0.3% 1.9% 3.8%

Testing for ApoE ε4 status should be performed prior to initiation of treatment to inform the risk of developing ARIA

• One ApoE4: 10.9%
• ≃ 1 out of 10

Affected by ARIA

The risk of ARIA-H (Hemorrhage) in relation to ApoE4 genetic status in lecenemab�

No ApoE4: 11.9%

≃1 out 9

• Two ApoE4: 39%
• > 1 out of 3

Tousi 2023

Individuals who DIDNOT receive Alzheimer's immunotherapy also developed microhemorrhage.

• One ApoE4: 14%
• ≃ 1 out of 7

Placebo 4.2% 8.6% 21%

Affected by ARIA

Where do we go from here?

• Era of novel diagnostic tests

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• Challenges in access and interpretation

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• Cutting-edge therapies

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• New efforts in implementing prevention strategies

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• Increasing awareness disparities in diagnosis and care

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Dong, X.,et al , Nature 2016.

Can we live longer if we treat AD?

Dong, X.,et al , Nature 2016.

Thank you!

Scan to complete

the evaluation

We will begin again at 1:50

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Please wait for your table to be called.

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Presented by:

Lorrie Warren: Facilitator

Dr. Jennifer Drost

Steve Elliott

Dr. Eileen Schwartz

Keith Stahl

NAVIGATING THE MEDICAL, BEHAVIORAL, & SOCIAL CHALLENGES TO COMPLEX CARE:

A MULTIDISCIPLINARY APPROACH

OBJECTIVES

Identify Vulnerability Indicators: Evaluate clinical and social indicators of self-neglect in seniors with chronic illness and cognitive impairment.

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Synthesize Collaborative Interventions: Select the most appropriate intervention for a high-risk senior by balancing medical recommendations with the legal safeguards.

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Navigate Available Resources: Understand the roles of available resources, and how and when to access them.

COGNITION

GUARDIANSHIP AND PROTECTIVE ORDERS

MENTAL HEALTH

HOUSING

SAFETY

Eleanor Vance is an 82-year-old widow who lives alone in her own non-subsidized apartment that is beginning to show signs of neglect. She has two adult children who live out of state and communicate with her infrequently. She is generally resistant to outside help, stating, “I’m perfectly capable”.

• Diagnosis: Type 2 Diabetes (uncontrolled, A1C = 9.8), Congestive Heart Failure (CHF), and mild cognitive impairment (diagnosed 6 months ago).
• Recent Event: Recently hospitalized for exacerbation of her CHF and an untreated foot infection (complication of diabetes).
• Medication: Complex regimen of 10 medications but often forgets to take them or takes them incorrectly. She refuses to use a pillbox.
• Mental Health: Exhibiting signs of anxiety and social isolation. She displays paranoid ideation regarding neighbors stealing her mail and objects, making in-home care coordination difficult.
• Legal: She has no Health Care Power of Attorney (HCPOA) or Durable Power of Attorney (DPOA) on file.

• Income: She relies solely on Social Security which is �approximately $1,200/month. She has no significant savings.
• Benefits: She has Medicare Parts A & B but is not enrolled in a low-income subsidy (LIS) plan for Part D and does not receive Medicaid or SNAP/food assistance.
• Housing: She received a Notice to Vacate from her landlord last week due to excessive clutter and cleanliness issues, which violate her lease. Her apartment is a fire hazard with pathways blocked by stacked newspapers and belongings.
• Care Needs: Eleanor requires assistance with her Activities of Daily Living (ADLs) and Instrumental Activities of Daily Living (IADLs) like medication management and paying her bills, but she refuses formal in-home care.

• Eleanor has been discharged home with a prescription for home health care and physical therapy. The home health nurse visited once, but Eleanor refused to let her check her vital signs stating, “I’m fine and you can leave.” The landlord’s Notice to Vacate deadline is in 10 days. Her next doctor’s appointment isn’t for four weeks.

• You will be shown 5 scenarios about Eleanor’s situation and possible resolutions. For each scenario, you will have 4 minutes to discuss at your table and determine the best course of action.
• Choose one person at your table to submit your group’s answer using Kahoot.
• After each scenario, we will bring the discussion back to the entire group for a short discussion before moving to the next scenario.

TO JOIN THE KAHOOT:

• Scan the QR Code on the next slide OR
• From your phone’s browser (Google, Safari, etc.) visit Kahoot.it and input the game code (on next screen).

Visit vendors and move into your breakout session. We will begin at 3:15

Death Doulas: Strengthening Support, Communication, and Person-Centered Care

back of main room

Who Speaks for Whom? Difficult Ethical Issues at End of the Life

stay in main room

Demystifying Public Assistance: From HB1 Policy Shifts to Practical Strategies for SNAP and Medicaid

next building

SENIOR SUMMIT 2026�WHO SPEAKS FOR WHOM:�DIFFICULT ETHICAL ISSUES AT THE END OF LIFE�8 MAY 2026; ST. GEORGE ANTIOCHIAN CHURCH�

Steven “Skip” Radwany, MD, FACP, FAAHPM

Medical Director, Grace House Akron

Former Medical Director Pall Care and Hospice and Ethics Chair, Summa Health

Professor of Medicine, Retired, NEOMED and OSU

Visiting Professor, U of Arizona

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Learning Objectives:�

We will use the stories of two patients to try to:

1. Balance competing moral claims within patients' families and with health care workers
2. Address the moral and practical issues in treatment over objection for serious illness
3. Discuss ethical questions related to the use of placebo

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“PLEASE TALK TO THEM. �I JUST CAN’T DO IT”�BALANCING COMMUNICATION AND DECISION MAKING AMONG LOVED ONES

86 year old male

• Widely metastatic lung cancer after 6 years of treatment
• Palliative Care has followed for 4 years for help with pain, shortness of breath, fatigue, and nausea with weight loss
• Now hospitalized; Palliative Care asked to help with advanced care planning

“I’ve had it. I’m done.”

• Severe heart failure; short of breath with minimal activity on maximum medications
• Advanced arthritis; now wheelchair bound
• Just told he cannot live independently
• Wife of 61 years died suddenly 4 years ago
• Large Italian family; he immigrated at age 6 and his wife was born shortly after her parents immigrated

“No machines. No more chemo. I just want to be at home to die”

• Oncologist and cardiologist present and think he has weeks at best even with aggressive treatment
• Agrees to go home with hospice, no return to hospital, and a DNR order.
• I request a joint meeting with him and his six children

‘That would be too painful”

• “I can’t do it. Please talk to them for me. Please”
• I argue for helping them and him gain closure
• That he needs to plan with them together
• He is resolute and begs me not to put him through this

QUESTION FOR YOU ALL:��HOW SHOULD WE RESPOND TO THESE SITUATIONS?

Things get worse

• I schedule a family meeting for the next day
• He has a massive stroke overnight (not surprising with widespread cancer and heart failure)
• Family meeting devolves into chaos and denial when I try to explain his wishes
• Oldest son: “I’m now the decision maker. You all are just covering up your mistakes by letting our dad die!”

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And worse…

• Oldest son demands to reverse his DNR order
• Wants him moved to ICU and placed on life support immediately as patient is declining and appears to have hours to live
• 4 siblings defer to the oldest son as do the 8 grandchildren present

Perhaps some intrafamilial dissension?�

• Never happens, right?
• One middle daughter who has been providing most of his in-home care for several years does not agree
• She takes you aside: “Dad has been preparing for this. He talked to me about being ready. When he tried to do this with my siblings, they immediately talked about something else…”

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WHAT SHOULD I DO?�

WHAT WOULD YOU DO?

BEAUCHAMP AND CHILDRESS’ FOUR PRINCIPLES OF BIOMEDICAL ETHICS

• Medical reality
• Patient autonomy – patient self determination
• Beneficence – you can only do things which can benefit the patient
• Nonmaleficence – do no harm
• Justice – do the most good for as many as possible; reduce inequalities

Adapted from Beuachamp and Childress Principles of Biomedical Ethics first published in 1979

So let’s try to help sort out this difficult situation

• Autonomy – his wishes were clear; expressed to more than one doc
• Beneficence – he now has days to live without life support; perhaps a week with it (medical reality)
• Nonmaleficence – would life support do him harm?
• Justice – what if it’s the last ICU bed and someone in the ER needs it?

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Do verbal instructions carry weight?

• Morally: absolutely!
• Legally: yes, but
• Stronger if well documented even if only a single provider is present, BUT
• Always better to have a witness who can confirm or even cosign the documentation, AND
• Can even override a living will or health care power of attorney if clear, consistent, and well documented

The real questions:

• How do we help this family grieve?
• How do we prevent any guilt?
• SUGGESTIONS?

“STRENGTH, TENACITY AND HER ABILITY TO ENDURE…”�ONE STORY OF MANY

Complex Patient with Many Needs

• Identify different ethical issues encountered in working with a homeless schizophrenic hospice patient
• Think about the special issues confronting hospice patients who are housing and caregiver insecure.
• Use this next story to review strategies, successes, challenges, future directions for Grace House Akron

Challenges

• Unmedicated unhoused person afflicted with schizophrenia
• Estranged from family
• Fragmented care
• Community Support Services
• Rad Onc/Med Onc
• Three community nonprofits (Grace House was the fourth)
• No psychiatrist due to the patient’s very interrupted care
• Kicked out of 4 different motels (funded by one of the nonprofits) due to the patient’s paranoid rants and disfigurement which was frightening other residents.

Background

• 55 yo with melanoma of the neck that was potentially treatable in its initial presentation.
• Declined/avoided treatment for years after diagnosis, leading to Stage IV disease extending to the face with deep erosion.
• Repeatedly lost to follow up due to untreated severe paranoid schizophrenia, lack of insight, and denial
• Additionally, had extended periods of being unhoused and alone.

Grace House Akron (GHA)

• Grace House Akron is a non-profit home for hospice patients who do not have access to stable housing or caregivers.
• Supported by community donations
• Patients must be enrolled in a community hospice for admission
• LOS typically 40-60 days

�How did Grace House come to be?

• Idea: 2015 grad school project for Holly Klein, RN
• 501C3 incorporated 2016; Board established and grown
• Multiple options assessed: lease LTC; lease hospice facility wing; remodel large house; build
• Land donated/cleared by Summa Health
• Designs discounted by GPD, a locally based international firm; downsized from original design due to inflation
• Funds raised during pandemic; opened 2022

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More history on this patient

• Grace House Director engaged frequently with community agencies and patient.
• Slowly coaxed patient into the facility and hospice enrollment gently over several months
• On a hospital admit for agitation working directly with community mental health agencies and Probate Court, Grace House Akron helped coordinate establishment of a guardian for the patient.
• Was then discharged back to Grace House which served as home for the remaining 8 months of life.

Depot Prolixin: an easy answer?

• Even while at Grace House, patient rants continued punctuated by banging head against wall
• Avoided all human contact
• These were well established behaviors
• Community mental health agency unable/unwilling to administer long-acting injectable antipsychotic meds (LAIAs) without consent
• Hospital Psychiatry also very reluctant without direct consent or even with a guardian’s consent
• What is the best course of action?

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WHAT ARE THE ETHICAL ISSUES REGARDING MEDICATING AN ACTIVELY PSYCHOTIC PATIENT AGAINST THEIR WILL

Principles for Ethical Decision Making when Caring for Patients

1a. Medical Reality (my addition)

1. Autonomy – patients make their own decisions
2. Beneficience – we must act for the benefit of the patient
3. Nonmaleficience – do no harm
4. Justice – benefits should be distributed in a fair manner

Adapted from Beuachamp and Childress Principles of Biomedical Ethics first published in 1979

LONG-ACTING INJECTABLE ANTIPSYCHOTIC AGENTS (LAIA’S)

• Multiple reviews conclude:

“People already stabilized on oral risperidone may continue to maintain benefit if treated with depot risperidone and avoid the need to take tablets, at least in the short term. Etc…”

“Although not rigorously studied, based on our clinical experience, LAIAs should be used in conjunction with cognitive and behavioral techniques … Such concurrent treatment is unfortunately not routinely available, leading to an overreliance on long-acting medication as the sole treatment.”

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Cochrane Reviews, 2016: a highly regarded international source for evidence-based medicine

UptoDate: Lauriello J and Campbell AR. Schizophrenia in Adults: treatment with Long-Acting Antipsychotic Medication; 2025

Nature of Informed Consent in Severe Mental Illness

Requirements:

• Ability to express a choice
• Comprehends nature of the choice; understands the information provided
• Understands consequences of decision for and against a proposed treatment
• Absence of duress?

“Sliding scale of consent”

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Adapted from many sources including: Brabbins C, Butler B, Bentall R. Consent to

neuroleptic medication for schizophrenia… Brit J Psychiatry. 1996;168:540-544.

Why the reluctance to prescribe depot antipsychotics without patient consent?

• Heightened attention to autonomy in the 60’s and 70’s in the USA after decades of a paternalism such that docs wouldn’t even discuss a patient’s cancer diagnosis with them
• Russia? Increased attention in the 1980’s…

“…ethical controversies aroused in all- countries by the compulsory detention and treatment of people in psychiatric institutions are heightened when the Soviet Union is considered…”

Wilkinson G. BMJ 1986;293(6548):641-642

Why the reluctance to prescribe depot antipsychotics without patient consent?

Ethical issues involved often emphasized as:

Autonomy vs. Beneficience

• Are patients such as this actually autonomous actors?
• Can someone unable to consent to surgery or chemotherapy have the capacity to refuse antipsychotic medication?
• Is there a legal difference between consent for and refusal of Rx?
• Can we as health care workers presume to know what is best for them? Either way?
• Anecdata: unmedicated functional schizophrenics

And the Other Ethical Priorities?

• Medical reality: probably helpful in uncontrolled schizophrenia
• Nonmaleficience: not treating when the patient poses a risk to themselves vs. treating and suffering side effects
• Justice: what about their loved ones? What about their neighbors?

Court Ordered Treatment �Over Objection

• Dates back to 1978 Renni vs Klein case which established that patients suffering from psychiatric illness have a constitutional right to refuse medication in non-emergent situations and mandates independent review procedures and representation before such treatment can be undertaken
• Different states have different standards of review:
• Ohio – has multiple layers: 2 hospital docs, then Psychiatry Chair, then ADM Psychiatrist, CSS, and Probate Court provide assessment + oversight
• Arizona (where I also happened to present this patient) – Title 36 requires two docs then a court hearing within 6 days
• Some states and counties enforce waiting periods

Do alternative approaches exist?

Psychiatric advance directives (PAD’s):

• Contingency planning for/by patients who refuse medications for psychosis
• “Are there situations in which you might accept medication in the lowest possible dose?”
• “If for example paranoia caused you to attack a loved one?”

Helping surrogates during a relapse (much more common)

• “What would she/he say if they saw themselves as they are at this moment?”
• “Are there specific parts of this illness that would be unacceptable to them?”

Sabin A. AMA J Ethics. 2016;18(6):572-578

Interval Resolution

• After an acute hospitalization, her newly established guardian consented to depot Prolixin which was administered over her screaming objections
• Again, discharged to Grace House
• Had to be taken to ER to receive depot injections from Palliative Care team initially (Psychiatry refused)
• Eventually hospice doc agreed to inject every 2 to 3 weeks
• Self destructive behaviors decreased
• Patient seemed to be regaining control of schizophrenia

Uh Oh!: Patient eloped from Grace House

• Still not openly acknowledging cancer
• Bothered by headaches
• Showed up at hospital ED demanding a CT head
• They complied and discharged her
• Then showed up at Radiation Oncology just to say hello!?!?
• Police eventually brought her back to facility

And it gets even more complicated

• Patient acknowledged the cancer. Radiation offered even though HMD expressed concerns that such treatment could not be part of hospice benefit
• If the patient revoked hospice they would lose housing.
• Radiation provider advocated for up to 5 treatments (20 initially planned) at no cost to the patient.
• Due to hospice concerns that the patient’s behaviors could escalate if treatment not provided the decision was made to proceed.
• In the end, patient quit after the first treatment.

Was this placebo radiation?

Placebo definition: “…substances or treatments that have [little or] no specific physiological or pharmacological effect on the condition being treated.

Pure vs. Impure Placebos

Pure = No physiologic effect (sugar pill?)

Impure = Some but not significant intended or believed effect (antibacterial drugs for a cold?)

Bliamptis J, Barnhill A. J Med Ethics 2022;48:759–763. doi:10.1136/medethics-2021-107446

Are placebo treatments ethical?

These authors believe that two requirements must be met:

• First, there must be scientific evidence from well-designed randomized controlled trials in clinical settings demonstrating clinically significant benefit from a given placebo treatment as compared with a no treatment or usual care control group.
• Second, the disclosure to patients regarding the placebo treatment must be honest and transparent.

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Miller F, Colloca L. Legitimacy of placebo treatments... Am J Bioethics. 2009;9(12):39-47.

Are placebo treatments ethical?

• Effectiveness?
• More clearly so for subjective as opposed to objective outcomes
• Multiple small studies are more encouraging
• Transparency?
• Placebo analgesic responses seem to depend on deception
• Other conditions less so
• Not clear how true transparency can be achieved

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Miller F, Colloca L. Legitimacy of placebo treatments... Am J Bioethics. 2009;9(12):39-47.

Is it morally acceptable to offer radiation with no medical benefit?

Back to the priorities:

Medical reality - not going to help

Autonomy – patient was more or less decisional by this time, but deception does compromise autonomy

Beneficience – It allowed patient to remain enrolled with hospice and thereby stay at GHA

Nonmaleficience – minimal harm; possible worsening of already impaired oral intake

Justice – might be using radiation time which could benefit someone else, but she has been on the short end of the justice stick for a long time

Patient Insight

• Ongoing titration of depot Prolixin improved condition
• Distressed about cancer which patient now acknowledged
• No denial of diagnosis but did not openly acknowledge schizophrenia

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QUESTION:

Did we serve this person poorly by making them sufficiently aware of the cancer to suffer from it, emotionally and physically?

Chapters 7,8,9…

• Returned to GHA and resided peacefully for a time
• Engaged more with staff; actually smiled and carried food trays to patient rooms
• Month 8: admitted to Acute Palliative Care Unit (APCU) at Akron City Hospital for worsening pain; PPS now 40
• The cancer had eroded the left perioral area
• Teeth and tongue were visible with the mouth closed
• Patient died comfortably in the APCU with GHA volunteers at bedside
• Estranged family came the day the patient died

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Lessons learned from this patient:

• This work is incredibly labor intensive: HPM docs and nurses, psychiatry, GHA leadership and staff, Probate Court, three community agencies, guardian
• ALL were prone to burnout
• If similar efforts had been able to focus upstream, would have been a curable cancer
• Careful use and titration of LAIA’s can be helpful
• Compromises had to be made

FINALLY

OBITUARY WRITTEN BY CHILDREN��(pat) 61, passed away from a courageous battle with cancer on August 10, 2024. (pat) was born….��(past) was a fantastic parent, who is survived by three children, (…) . (pat) was a grandparent to five beautiful grandchildren: (…) ��(pat) will always be remembered by those who knew them for their strength, tenacity, and ability to endure and overcome all that life had placed in their path.�Per wishes, cremation has taken place.�

Lessons learned from both patients

1. Communication means everything
• First patient: its lack almost resulted in tragedy and conflict
• Second: medication allow patient to make decisions
2. Don’t judge: “you never know how the blood got on the floor”

SCAN THE QR CODE TO COMPLETE THE EVALUATION

Death Doula Nicole

Strengthening Support, Communication, and Person-Centered Care

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May 8th, 2026

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Why This Conversation Today Matters:

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~ Every professional in this room will encounter families navigating serious illness or death.

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~ Lawyers, social workers, care professionals often see the emotional and logistical stress families experience.

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~ Death Doulas help support families through this transition.

Hello And Welcome Everyone

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Define the role of a Death Doula and how it differs from clinical end-of-life care

Dispelling common myths about death doulas

How death doulas work with lawyers and social workers

Understanding the Silver Wave and its impact on professionals

Learning Objectives

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Why Additional Support at End-of-Life Matters

~ Families are carrying most of the care.

~ Many families feel unprepared emotionally.

End-of-Life Reality

Medical teams help people die comfortably. Additional support helps people die meaningfully - and helps families live with that experience afterward.

~ The clinical care is primarily focused on the medical needs.

~ People are afraid to talk about death.

~ The dying person sometimes struggles with still “being seen”.

~ Presence matters.

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What is a Death Doula?

A Death Doula provides non-medical emotional, practical, and educational support to individuals and families before, during, and after death.

Death Doula ⟶ Supports the final chapter

Birth Doula ⟶ Supports beginning of life

What Death Doulas Do

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Emotional Support

Communication Support

Legacy Work

~ Sitting vigil

~ Holding space for difficult emotions

~ Helping normalize fears and grief

~ Facilitating conversations families struggle to start

~ Helping loved ones express feelings

~ Supporting reconciliation and closure

~ Respite care

~ Emotional validation

~ Helping caregivers slow down and to be present

Caregiver Support

~ Recorded messages

~ Storytelling

~Legacy Reels

Where Doulas Can Fill Gaps

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Death Doula Support Focuses On:

Clinical Care Focuses On:

~ Symptom management

~ Medication

~ Treatment planning

~ Care coordination

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~ Emotional presence

~ Meaning-making

~ Family dynamics

~ Focusing on meaningful experiences

Death Doulas COMPLEMENT clinical care - they do not replace it.

How Doulas Can Help Lawyers

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Where a Death Doula can help:

Lawyers often see:

~ Conflict between family members

~ Lack of advance planning

~ Confusion about wishes

~ Emotional stress that is impacting decision making

~ Encourage conversations about wishes

~ Support legacy planning

~ Reduce conflict

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Legal Challenges at End-of-Life

Social Workers and Death Doulas

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A Death Doula can complement by:

Social Workers often support:

~ Anticipatory grief

~ Caregiver exhaustion

~ Family conflict

~ Distress caused by outside forces

~ Provide extended presence

~ Facilitate legacy projects

~ Offer bedside support

~ Support caregivers/family members when systems are overwhelmed

Doulas Complement Social Work

Doulas and Social Workers often share the goal of supporting the whole person and family.

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Client Story

~ A family was struggling with talking to their mother/wife about carrying on traditions.

~ Adult children avoiding conversations + a father/husband not emotionally available.

~ Enter Death Doula

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Documented wishes for carrying on Thanksgiving and Christmas traditions. A husband/father opening up to the doula; bringing her into the fold on his wife’s care team. The documented wishes and conversations became cherished keepsakes after mom/wife died.

Result

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Myths About Death Doulas

Myth: Doulas replace hospice

Fact: They complement hospice - sometimes doulas are the ones to suggest hospice to families

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Myth: Death doulas are only spiritual

Fact: Support can be emotional, practical, or spiritual - all depending on what the dying and the family needs

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Myth: This work/role is only for the dying person

Fact: Much of the support is for the family

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Myth: Death doulas are a new trend

Fact: Historically, communities and families cared for their dying at home with people who guided the process. Death doulas are part of a modern revival of that community-based care.

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Silver Wave - Impact to Lawyers and Social Workers

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~ The Silver Wave is putting a massive increase in demand for elder care, legal services, and social services.

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~ Families are smaller and more georgraphically spread out, leaving few caregivers.

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~ People are living longer with complex medical and cognitive conditions like Alzheimer’s and dementia.

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~ Lawyers are seeing an increased demand for wills, trusts, POA’s, and healthcare directives.

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~ Social Workers are managing higher caseloads, care coordination, family conflict, and burnout.

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Why This Matters as a Death Doula

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~ The Silver Wave is creating gaps that traditional care teams cannot fill.

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~ Doulas are creating the space to be emotionally supportive to the dying and their families.

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~ Doulas are helping families put focus on legacy work that often falls through the cracks.

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~ Doulas are stepping in for continuity of care - many during non-traditional hours.

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~ The Silver Wave is increasing the need for legal and social services - but it is also revealing the human gaps in end-of-life care where death doulas can provide meaninful support.

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What Families Most Often Need

My Experience

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~ Emotional safety - being “ok” to express fear, grief, anger, and uncertainty without feeling that they need to “stay strong”.

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~ Help with the difficult conversations - many want to say important things (gratitude, forgiveness, love), but don’t know where or how to begin those conversations.

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~ Reassurance about what is normal - the dying process can be frightening and unfamiliar. While the care team has explained this, sometimes families need the extra reminder of what is happening during this time.

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~ Support for caregivers - we’ve all seen it - caregiver fatigue - sometimes they just need someone to support them while they are supporting their dying loved one.

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~ Meaningful ways to say goodbye - during the chaos of end-of-life care, the legacy work can get lost in the moment. Storytelling, legacy projects, obituaries, or simple rituals are simple things families forget about but need.

These needs are deeply human - and they are often where death doulas can provide the greatest support.

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Website

Phone Number

Facebook/Instagram

Email

www.deathdoulanicole.com

330-714-0182

Death Doula Nicole

Nicole@deathdoulanicole.com

Contact

Me

Scan for Evaluation

Demystifying Public Assistance: �From HB1 Policy Shifts to �Practical Strategies for SNAP & Medicaid

Summit County Department �of Job & �Family Services

Heather Yannayon �Deputy Director, Workforce & Program Services

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Tamara Dennis�Long Term Care Program Supervisor

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Stephanie Carothers �Deputy Director, Family & Adult Services

Agenda�

Food Assistance SNAP Changes

Medicaid Community Engagement Requirements

Long�Term Care Program Information

JFS Best Practices

In Our Community�

Summit County population - 535,000 residents

• 20% under 18
• 60% between 18-64
• 20% over 65

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Approximately 78,000 residents (15%) receive SNAP

Around 135,500 residents (25%) receive Medicaid coverage

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Average of 5,800 children have active childcare authorizations

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Food Assistance: �SNAP changes �

Refugees & Lawful Permanent Residents

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Standard Utility Allowance & Utility Check Income

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Work Requirements Changes Abled Bodied Adults (ABA)

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Focus on Quality Assurance

�Sugary Beverage Restriction 10/1/2026

SNAP: �LPRs & Refugees�

Lawful permanent residents (Green Card Holders) are subject to a 5-year waiting period from date their status was granted

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Effective 11/2025 for new and existing individuals

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SNAP was terminated for those individuals that had been receiving them but the 5 year waiting period had not been served yet

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Some may qualify without the 5 year waiting period including under age 18, have 40 qualifying work quarters, blind or disabled & refugees

SNAP: �Standard Utility Allowance �& Utility Check�

The standard utility deduction is a deduction that reduces overall income counted in SNAP budget for calculation of benefits

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Receipt of HEAP can no longer be used as automatic reason for SUA unless elderly or disabled

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DJFS will now be requesting utility bills to verify incurring of expense

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Utility reimbursement checks issued to individuals in subsidized housing will now count as unearned income

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Failure to verify the check can result in denial/termination of SNAP

SNAP: �Work Requirements Changes- ABA�

Abled-Bodied Adults only eligible for 3 months in a 3 year (36 month) period unless they are working, volunteering or participating in a work program 20 hours a week

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HB1 removed federal exemptions for homeless, veterans and youth aging out of foster care

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Child age exemption decreasing from 18 to 14

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Increases work requirement age from 55 to 64

SNAP: �Work Requirements �Changes- ABA�

Summit County potential impact on over 16,000 individuals (20% of current SNAP recipients)

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Exemptions exist for pregnancy, unemployment, physically or mentally unfit for employment, responsible for care of a dependent child under six or incapacitated person

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SNAP households with an ABA individual will now be certified every six (6) months instead of twelve (12) months

SNAP: �Work Requirements Changes- ABA�

Employment or self-employment of 20 hours a week

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Verified unpaid, volunteer activity of 20 hours a week

• Must not take place in own home
• Must benefit the community/member of community does not reside with you
• Must be verified on JFS-7410 “ABA Verification of Unpaid Hours”

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SNAP Education & Training Program (SNAP E&T)

• Voluntary program that can help participants gain skills and find work
• Offers free training, education and career advice & work supports

SNAP: �Sugary Beverage Ban�

Effective 10/1/2026- Waiver prohibits SNAP recipients from buying beverages that list sugar, corn syrup, high-fructose corn syrup or similar caloric sweeteners as the primary ingredient — or as the second ingredient if the first ingredient is carbonated water.

Medicaid �Community �Engagement �Requirements�

Who is the affected �(Group VIII) Population?

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Exemptions

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Qualifying activities

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Timeline

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Medicaid: �Affected Group �IIV Population�

The requirement applies to some people who are covered in Group VIII (also known as MAGI Adult or Ribicoff coverage) —generally, adults ages 19–64 who have Medicaid because their income is at or below 138% of the Federal Poverty Level.

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Only applies to Medicaid individuals that are part of Group VIII, who are not pregnant, not disabled, and not otherwise exempt (such as parents of young children, individuals with certain medical conditions, Native Americans, and others specified in H.R.1).

Medicaid�Exemptions�

Individuals under 19 or over 65

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Pregnant or postpartum individuals

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People who are eligible for Medicare

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Caregivers of young children (13 or under) or disabled dependents

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Individuals meeting SNAP or TANF work requirements

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Those with disabilities or serious medical conditions

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People participating in a Substance Use Disorder (SUD) treatment program

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Former inmates of a public institution during the last 3 months

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Native Americans and certain other groups

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Medicaid�Qualifying �Activities

To maintain Medicaid eligibility, individuals must demonstrate that they meet one of the following in a given month:

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Worked at least 80 hours, which can be verified by income in some cases,

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Completed 80 hours of community service,

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Participated in a work program for 80 hours,

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Been enrolled half-time in an educational program, or

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