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From Risk to Resilience

We advance issues through…

Thanks to our Community Partners & Committee

COMMUNITY

UNIVERSITY OF ROCHESTER

University of Rochester

Aging Institute

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Promoting Vitality in Aging through

Collaboration, Discovery and Innovation

Vision

With vitality and resilience,

aging adults have the power to thrive

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Mission

Promote vitality in aging by transforming care

and communities through collaboration,

discovery and innovation

COMMUNITY

UNIVERSITY

Vital Discovery

Vital Care

Vital Living

University of Rochester

Aging Institute

UR Aging Institute�Website�������https://www.urmc.rochester.edu/university-of-rochester-aging-institute.aspx�

�Conversations that Matter: �Promoting Safety for Individuals with Dementia and their Families

Carol Podgorski, PhD, MPH, LMFT

University of Rochester Department of Psychiatry

UR/Finger Lakes Center of Excellence for Alzheimer’s Disease

Carol_Podgorski@URMC.Rochester.edu

June 17, 2024

MY PERSPECTIVE�-Family Therapist�-Clinic Director�-Team Member�-Program Director�

What is Dementia?

• Dementia is a general term for a group of neurological conditions that affect the brain and impair a person's ability to think, remember, and reason. These conditions can worsen over time and interfere with daily activities.

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• Alzheimer’s disease is the most common cause (60-80%)

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• There are over 100 medical conditions that can cause dementia

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Prevalence by Race/Ethnicity

Rajan KB, Weuve J, Barnes LL, et al. Alzheimer's Dement. 2021; 17: 1966–1975.

Dementia is more than memory loss

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VERBAL SKILLS

VISUAL/SPATIAL PERCEPTION

ABSTRACT

THINKING

ORIENTATION

REASONING/

JUDGMENT

BLADDER, BOWEL, MOTOR FUNCTION

MEMORY

LOSS

PERSONALITY

ORGAN

FAILURE

ATTENTION

SPAN

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Alzheimer’s Disease

Those with dementia

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Those who care for them

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= 1 Million

18+ BILLION HOURS OF CARE

The toll on family caregivers is substantial

Patient- and Family- Centered Care

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Is it enough in dementia care?

Patient-centered care?

“Being respectful of and responsive to individual patient preferences, needs, and values” (Institute of Medicine, 2001)

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• Honoring patient and family choices
• Including them in decision-making
• Sharing timely, complete, and accurate information
• Collaborating across care settings (Johnson & Abraham, 2012)

��Family-centered care

• Developing and implementing patient care plans with family participation (Kokorelias, et al., 2019)

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���Current treatment strategies for dementia

• Provide an accurate diagnosis
• Manage risk factors that can be managed
• Prescribe medication to manage symptoms
• Refer to clinical trials
• Encourage PWCI and family to plan for the future
• Provide education for family caregiver
• Refer PWCI and FCG for support and community resources
• Monitor changes over time
• Provide end of life care

https://www.alz.org/careplanning/downloads/cms-consensus.pdf

Family �Caregiving �Roles

CARE

COORDINATOR

ADVOCATE

HEALTH CARE DECISION MAKER

LEGAL/

FINANCIAL MANAGER/

POA

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“NURSE”

HOUSEKEEPER/

COOK

PARTNER

What’s missing?

ACKNOWLEDGMENT OF THE FAMILY CAREGIVER’S BIOPSYCHOSOCIAL NEEDS

ASSESSMENT OF HOW FAMILY RELATIONSHIPS, BEHAVIORS, HEALTH, RESOURCES, ETC. MAY AFFECT THE PWD’S WELL-BEING

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Society

Community

Patient-Centered

(Individual)

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Relationships

Society

Assessment and treatment strategies focus solely on the needs of the patient in the individual level and not within the context of the person’s

relationships or environment

Reflections on family caregivers

• Caregivers are first and foremost family to the person in need of care

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AND …

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• Our health care system calls on them and expects them to become part of the healthcare team

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Often without knowing--

• if they are able and willing
• if they have the resources to perform the tasks required
• what other responsibilities they have
• if the caregiver of record is the one the PWCI prefers in these roles

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Society

Community

Relational

PWD

Individual

FGC

Individual

Relational

Community

Family matters

Why caregivers provide care

• Attachment

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• Obligation

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• Exchange

Becoming a caregiver usually involves a decision … and lots of feelings

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SPOUSES OFTEN PERCEIVE CAREGIVING AS CONNECTED TO THEIR VOWS

SOME SPOUSES & CHILDREN PUT A BOUNDARY OR LIMIT ON WHAT THEY WILL OR CAN DO

SOME FAMILY MEMBERS MAKE PROMISES THEY MAY NOT BE ABLE TO KEEP

Context matters

• My mother left when we were young and now she expects me to take care of her.

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• I would like to know if my husband’s dementia was caused by his years of alcohol abuse. If it wasn’t I won’t have a problem caring for him but if it was…

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• My wife took care of me and our kids for many years while I was working. Now it’s my turn to take care of her.

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• My husband had an affair for the past 20 years of our marriage and now I’m expected to give up my life to care for him?

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Caregiver authority matters

• Range of responsibilities

🡪 Often without authority

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• Family dynamics are related to end-of-life discussions
• Better family functioning
• Marital satisfaction
• Spousal support
• Close parent-child relationships

(Boerner et al., 2013)

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Only about half of Americans have had end of life conversations with family and only 27% have completed ACP documents

(Hamel, 2017)

Most older adults prefer

• An independent or shared role when making health decisions with physicians (84.7 %)
• With family and close friends (95.9%) (Wolff & Boyd, 2015)

Family relationships matter

• Family favoritism
• Elder abuse in dementia
• PWD can be abusive

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• Psychological abuse (27.9- 62.3%)
• Physical abuse (3.5% - 23.1%)
• Neglect (20.2%)
• Financial exploitation (15%)
• Multiple forms of abuse (31%)
• (Dong, et al., 2014)

Of family caregivers:

• 35% reported verbal abuse
• 6% reported physical abuse

(Cooney et al., 2006)

Family relationships can create power dynamics that lead to misrepresentation of the patient’s wishes, elder mistreatment, or family violence

Consider this

In a clinic population of 1,000 patients with CI…

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… if we apply a conservative estimate of elder abuse at 31%

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… then it is likely that 310 are victims of abuse

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How many practitioners would be able to identify who those 310 older adults in their care might be?

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The Need for a Family Frame

There is danger in assuming that all people with dementia live in “HOME SWEET HOME” environments

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Society

Community

Relationships

PWD

Individual

FGC

Individual

Relationships

Biopsychosocial-Ecological Family-Framed Approach to Dementia Care

Podgorski, Anderson & Parmar (2021)  Frontiers in psychiatry, 12, 744806

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Community

Family �Framed�Dementia�Care:�Goal

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For medical, healthcare, and human service providers to know and understand the PWD and FCG(s) within the context of their family relationships to develop a plan of care that:

• Meets the biopsychosocial needs and wishes of the PWD
• Considers the biopsychosocial needs, wishes, and resources of the FCG(s)

so that the care plan will:

• Be feasible
• Likely to be implemented
• Promote the safety and well-being of the PWD and FCG(s)

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Patient-centered�care with a family frame

• Assess whether the patient can provide accurate, reliable information

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• Ask patient about their health, memory, function and how they feel about being there (e.g., hopes, fears)

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• Is patient comfortable with the accompanying person answering questions about their health, memory, and function? If not, why not and is there a more appropriate contact?

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• Does the patient have a health care proxy or designated POA?

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• What does the patient expect from the appointment and how can the physician and staff be helpful? Is the patient comfortable with the family member being in wrap up session?

CARE CONSIDERATIONS

• Patient needs, preferences, expectations for

visit and questions

• Caregiver/Informant expectations for visit

and questions

• Caregiver/Informant needs regarding

support of patient’s plan of care

FOCUS

Family Caregiver/�Informant-focused care with a family frame

CARE CONSIDERATIONCARE CONSIDERATIONS

S

FOCUS

• What is this person’s relationship to the patient?
• Does this person have authority as a health care proxy or POA?
• Does the accompanying person regard their self as a caregiver? Who else is involved with care?
• How would the patient feel about them answering questions about their health, memory, and function?
• Whose idea was it to schedule this appointment?
• What does the family member expect from the appointment and how can the physician and staff be helpful?
• Review the plan of care. Ask if they have what they need to care for the patient as discussed in our plan? If not, what would be helpful?

Caregiver-centered care with a family frame

CARE CONSIDERATIONCARE CONSIDERATIONS

S

FOCUS

• What are the family member’s responsibilities as a caregiver?
• What is their level of caregiver burden? Any mood-related symptoms? Healthy coping strategies?
• How are they managing in this role? Are they practicing self care?
• Does the person have any help or support? Is the person comfortable seeking or asking for support or might they need help?
• Does the caregiver have any educational needs?

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• Caregiver well-being
• Caregiver resources & skills
• Barriers to providing care

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Thank you!

Realizing the Promise of Olmstead: �New Jersey-based efforts to expand access to home care

Hannah Diamond, Policy Advocate, Justice in Aging

June 17^th, 2024

Justice in Aging is a national organization that uses the power of law to fight senior poverty by securing access to affordable health care, economic security, and the courts for older adults with limited resources.

Since 1972 we’ve focused our efforts primarily on fighting for people who have been marginalized and excluded from justice, such as women, people of color, LGBTQ+ individuals, and people with limited English proficiency.

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To achieve Justice in Aging, we must:

• Advance equity for low-income older adults in economic security, health care, housing, and elder justice initiatives.
• Address the enduring harms and inequities caused by systemic racism and other forms of discrimination that uniquely impact low-income older adults in marginalized communities.
• Recruit, support, and retain a diverse staff and board, including race, ethnicity, gender, gender identity and presentation, sexual orientation, disability, age, and economic class.

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Justice in Aging’s Commitment to Advancing Equity

Objectives

• Brief Overview of Medicaid LTSS
• Discuss Institutional Bias
• Celebrate Olmstead v. LC
• New Jersey-based Efforts to Expand Financial Eligibility Criteria in Medicaid

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Who Pays for LTSS?

• Medicaid is the largest payer of both HCBS and institutional long-term care
• State and federal partnership
• Medicare is federal health insurance for people over the age of 65 or younger people with disability benefits
• Medicare coverage of long-term care services and supports is very limited
• Pays for limited personal care when eligible for the home health benefit

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Institutional Bias Limits Access to HCBS

• Federal Medicaid law requires states to cover institutional long-term care, like care provided in a nursing facility, but it does not require states to provide the full range of HCBS that people need
• Someone needing long-term care is only guaranteed services in an institution
• Shift to less institutional and more integrated long-term care has led to an increase in HCBS programs
• Rebalancing initiatives, Olmstead v. LC

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Efforts to Expand Financial Eligibility Criteria: New Jersey Example

Eligibility Criteria for NJ FamilyCare are Inequitable

• The Affordable Care Act (ACA) enabled states to expand Medicaid eligibility to those under 65
• Incomes at or below 138% of the federal poverty line
• Remove asset restrictions for this population
• The ACA did not expand income and asset criteria for older adults and people with disabilities
• Subject to more stringent criteria than other Medicaid populations

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Medicaid: State and Federal Partnership

• The federal government establishes basic parameters for state Medicaid programs
• Required covered populations
• Required covered benefits
• States maintain significant flexibility in the design of their Medicaid programs
• Financial eligibility criteria

Income Limits for NJ FamilyCare Programs

Asset Limits for NJ FamilyCare & JAAC Programs

The Impact on Older Adults and People with Disabilities

• Results in loss of Medicaid coverage
• Force populations into deep poverty, inhibiting their ability to save money for an emergency
• Disproportionately punishes older adults of color
• Reduces health and financial stability

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Leveraging Lessons Learned

• California and New York both expanded financial eligibility criteria via state budget processes
• Increased income threshold to 138% for ABD
• Expanded asset threshold
• CA: eliminated altogether
• NY: 150% of 138% of FPL

How to accomplish this change?

• Statutory change
• Via state budget process or legislation
• Administrative code change
• State must submit a state plan amendment to CMS

Proposed Policy Changes

• New Jersey should pursue legislative changes to increase the income eligibility for the Aged, Blind, Disabled (ABD) and Medically Needy programs up to 138% of the federal poverty line to align with the Medicaid expansion population.
• New Jersey should pursue legislative changes to increase the asset eligibility criteria for the NJ FamilyCare ABD, Managed Long Term Services and Supports (MLTSS), and Medicare Savings Programs (MSP) programs to $40,000 to align with the Jersey Assistance for Community Caregiving (JAAC) program.

Efforts to Date

• Sign-on letter with 70 signatories in fall of 2023 to the State Medicaid director
• Conversations with Medicaid agency
• Currently identifying legislative champions
• Drafting bill language
• Gathering stories

New-Jersey Specific Resources

New Jersey Specific Resources

• An Equity Framework for Evaluating and Improving Home and Community-Based Services
• Issue Brief
• Fact Sheet
• HCBS Primer
• HCBS 101 Webinar
• 22 Recommendations to Improve Equitable Access to HCBS in NJ
• Raising the Medicaid Income Limits for Older Adults and People with Disabilities
• Raising New Jersey’s Medicaid Asset Limits for Older Adults & People with Disabilities
• Fact sheet and one-pager (contains talking points for outreach)

Go to justiceinaging.org and hit “Sign up” or send an email to info@justiceinaging.org.

Join Our Network!

Want to receive Justice in Aging trainings and materials?

Hannah Diamond, hdiamond@justiceinaging.org

@justiceinaging

AGE WISE: �HOME SWEET HOME��TRICIAJEAN JONES, MHA�DIRECTOR OF ONTARIO COUNTY OFFICE FOR THE AGING

AREA AGENCIES ON AGING �NEW YORK STATE

It is the mission of the New York State Office for the Aging to help all older New Yorkers to be as independent as possible for as long as possible, with an emphasis on hard-to-serve and diverse populations. NYSOFA fulfills this mission through advocacy, development, and delivery of person-centered, consumer-oriented, and cost-effective policies, programs, and services that support and empower older adults and their families, in partnership with a network of public and private state and community organizations.

-NYSOFA Mission Statement

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COMMUNITY-BASED PROGRAMS �

• Home delivered meals (HDM)
• Congregate meals
• Nutrition counseling and education
• Senior center programming
• Health promotion and wellness
• Evidence Based Interventions (EBIs)
• Volunteer opportunities
• Respite and caregiver supports
• Legal Services
• Home modifications, repairs 
• Elder abuse prevention and mitigation
• NY Connects
• Health Insurance Information, Counseling and Assistance Program (HIICAP) 
• Personal Care Level I and II 
• Case management
• Ancillary services, such as Personal Emergency Response System (PERS) and assistive devices
• Social adult day services 
• Transportation to needed medical appointments, community services and activities 
• Long Term Care Ombudsman Program �

FOOD & MEALS

Nutrition Program

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• Home-Delivered Meals
• Community Dining
• Special Diets & Frozen Meals
• Nutrition education and counseling by a registered dietitian

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• Senior Farmer’s Market Nutrition Program

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• Supplemental Nutrition Assistance Program: SNAP Assistance

RESPITE & CARE GIVER SUPPORT

• Respite Care- Short term relief for caregivers in the form of a personal care aide or social adult day care
• Resource Centers – Informational materials at 10 Ontario County libraries
• Individual counseling and care coordination
• Referrals to support groups

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https://newyork-caregivers.com/

https://www.anycarecountsny.com/

HOME MODIFICATIONS AND REPAIRS

• Partnership with Home Safe Home Program
• Hani capped Ramps Loan Program partnership with Habitat for Humanity
• Safe Homes: Finger Lakes Community Action
• Sheen Housing: Bishop Sheen Ecumenical Housing Foundation Home Repair Program
• USDA Rural Development Program

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Minor home modifications including installation of grab bars, smoke detectors, hand rails for stairs, door grips, handicapped toilet seats, tub transfer benches, bathtub seats.

IN-HOME CARE AND CASE MANAGEMENT

EISEP: Expanded in-Home Services for the Elderly Program

EISEP provides non-medical services to those 60 and over and need help with Activities of Daily Living, such as dressing, bathing, personal care, and Instrumental Activities of Daily Living, such as shopping, cooking and cleaning.

The EISEP program provides:�     - Case management�     - Personal Care and Homemaker/Chore Services�     - Ancillary Services: Installation of Grab Bars, Home Inspections, Heavy Cleaning

A case manager determines needed services through an assessment, develops a care plan, coordinates, adjusts, and monitors the ancillary services provided. The provision of services is determined by the case manager and is intended to provide an individual with the ability to remain safely in the community.

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MLTC: Managed Long-Term Care Program

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MLTC provide long term services and supports to chronically ill and disabled people who are eligible for Medicaid.

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If you are Medicaid eligible and need home care services, you may qualify for an MLTC Plan if you:

- Have both Medicaid and Medicare (dual eligible)

- Need home care, adult day health care, or other long-term care for more than 120 days (four months)

- Are age 21 and over

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The MLTC Case Manager will help you with services that may include:

• Home Health Aides
• Nurses
• Physical Therapists
• Personal Care: Help with bathing, dressing and grocery shopping.
• Adult Day Care –Medical & Social
• Specialty Health: Audiology, Dental, Optometry, Podiatry.
• Nursing home care
• Other Services:
• Personal Emergency Response Systems (PERS)
• Home-delivered meals, congregate meals
• Transportation to medical appointments

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ADDITIONAL SERVICES & DEVICES

• Personal Emergency Response Systems (PERS)
• Elli-Q Proactive Care Companion
• Animatronic Pets
• Life Saver Project
• Yellow Dot Program
• Ontario County Sheriff’s Department Handle with Care Program

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TRANSPORTATION SERVICES

The Office for the Aging Mobility Manager can use their knowledge about a variety of transportation services available to help you or a loved one find the resource that is right for you. 

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Programs are available at no cost for eligible older adults for transportation to:

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Medical appointments

Grocery shopping

Personal errands

Visiting friends and family

Non-medical, wellness-related trips

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Transportation Partners

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• GoGo Grandparents makes on-demand services accessible and reliable so you can thrive independently and confidently at home.

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• Traveling with RTS Ontario is a great way to get just about anywhere in Ontario County. It saves you money, gives you more free time – and helps you to relax instead of worrying about getting to your destination.

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• The goal of the Finger Lakes Bus Service is to provide the highest quality transportation service for our community. We take pride in our vehicles, safety record, and trained and compassionate drivers!

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• Here2There is a “one click platform”, which is a tool to assist you in finding transportation options based on your individual needs. To learn more, please visit Here2There.help/home

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Educational Opportunities

Retiring from Driving

AARP Safe Driver

The Talk (How to talk to your family member about giving up the keys)

Alternatives to Driving

CarFit

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THANK YOU

Triciajean Jones, MHA

Director

Ontario County Office for the Aging

(585) 396-4040