Caregiver Neglect

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About the Academy & APSWI

The Academy is a project of San Diego State School of Social Work. Serving over 20,000 health and human services professionals annually, the Academy’s mission is to provide exceptional workforce development and learning experiences for the transformation of individuals, organizations and communities.

APSWI, or Adult Protective Services Workforce Innovations, is a training program of the Academy that provides innovative workforce development to APS professionals and their partners.

ACADEMY PROGRAMS

San Diego State University

Housekeeping and Introductions

• Course Overview
• Breaks, Restrooms, etc.

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• Trainer Introductions
• Participant Introductions
• What has been your biggest challenge in assessing for neglect by others?
• What is your biggest concern about interviewing alleged perpetrators of neglect?

Training Goal

• Two examples

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• Are both of these instances of caregiver neglect?

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• Would your finding(s) differ on either?

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• How do the dynamics of each scenario impact service planning?

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Learning Objectives

• Identify physical and behavioral indicators of neglect.

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• Identify factors that contribute to the client’s risk of neglect.

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• Assess allegations of caregiver neglect using five domains of assessment.

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• Explain how dynamics of caregiver neglect impact service planning and describe barriers to service planning.

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• Identify useful interviewing techniques when interviewing alleged perpetrators.

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• Define components of service planning.

What is Neglect?

• Neglect is defined as the refusal or failure to fulfill any part of a person's obligations or duties to an elder {or dependent adult}. Neglect may also include failure of a person who has fiduciary responsibilities to provide care for an elder {or dependent adult}. (NCEA)

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• Self-neglect involves older adults or adults with disabilities who cannot meet their own essential physical, psychological or social needs, which threatens their health, safety and well-being. This includes failure to provide adequate food, clothing, shelter, and health care for one’s own needs. (NAPSA)

Types of Neglect

• Lack of medical treatment

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• Inadequate nutrition and/or hydration

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• Lack of assistive devices

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• Hazardous environment

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• Lack of appropriate clothing or hygiene

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• Abandonment (*)

Who is a Caregiver?

• An individual who has the responsibility for the care of an elder, either
• voluntarily,
• by contract,
• by receipt of payment for care,
• or as a result of the operation of law, and
• means a family member or other individual who provides (on behalf of such individual or of a public or private agency, organization, or institution) compensated or uncompensated care to an elder who needs supportive services in any setting. (Elder Justice Act, Sec. 2011. [42 U.S.C. 1397j])

Case Example

Leonard:

• Lived alone except when relatives periodically moved in
• Had diabetes and lower leg was amputated
• House was unmaintained
• Depended on others for grocery shopping

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Is Leonard being neglected?

Who is/are Leonard’s caregivers?

Does Leonard meet the definition of caregiver neglect?

Formal vs. Informal Caregivers

Formal

• Individuals who are paid or volunteer to provide care services.
• Some agreement (verbal or written) has been made.
• Often is from a Social Service Agency and has some training on providing care. Can be a family member or friend.
• Personal Assistance Services (PAS) refers to paid care providers.
• Depending on the funding sources, various terms are used for PAS employees: Home Health Aides, Personal Assistants, Personal Care Attendants, etc.

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Informal

• Family members, relatives, partners or friends who provide the care giving responsibilities.
• Neighbors, members of a congregation
• Not usually set, clear instructions

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Benefits and Possible Negative Outcomes

Possible benefits of having informal caregiving:

• Familiarity and trust
• Can provide care during “off hours”- live in home
• Might fulfil cultural expectations
• Less expensive

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Possible negative outcomes of having informal caregiving:

• Lack of formal training can be harmful
• Might provide inadequate care
• Resentment

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State Statutory Definitions

An important element for establishing caregiver neglect is care and custody over the person(s) being neglected, whether the caregiver is a formal or informal caregiver.

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Terms for “neglect” and “caregiver” are determined by state law.

• In California:
• Care Custodian means administrator or an employee of a public or private facility or agency, or persons providing care of services for elders or dependent adults (W&I Code 15610.17)
• A person who knows or reasonably knows that a person is an elder or dependent adult and who: (CA Penal Code 368)
• Under circumstances and conditions likely to produce great bodily harm or death, willfully causes or permits person to suffer, or having the care or custody of any elder or dependent adult, willfully causes or permits the person or health of the of the elder or dependent adult to be injured, or placed in a situation in which their health is endangered

Criminal Neglect = Serious Bodily Injury

• Social Service professionals assess for the necessary services that need to be put in place.

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• Criminal Justice System assesses the possibility of a crime and prosecutes criminal actions.

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• Most state criminal statutes do not include penalties for caregiver neglect.

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• All state criminal statutes include penalties for some form of serious bodily injury or assault.

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• Neglect that results in serious harm or death to the victim may be chargeable under criminal law.

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• A conviction of a charge of serious bodily injury may result in criminal penalties.

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• Be familiar with your state’s criminal laws regarding serious bodily injury and/or assault.

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Caregiver Neglect May Be Life Threatening

CONTENT WARNING

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• 2001:
• Due to stroke, paralyzed on left side
• Communication with biological children cut off
• Uses a wheelchair and 24- hour care is needed
• APS services provided multiple times
• 2005:
• Cyanotic, temperature of 96.7 degrees, 59 lbs.
• Bedsores to the bone
• Stained sheets with insects in bed
• Expired Rx bottles

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Serious Bodily Injury �

CA W&IC 15610.67

• Extreme physical pain

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• Substantial risk of death

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• Protracted loss or impairment of the function of a bodily member, organ, or mental faculty; or

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• Requiring medical intervention such as surgery, hospitalization, or physical rehabilitation.

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Working with Law Enforcement

CONTENT WARNING- IMAGE

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• Use the language from your state criminal code in all reporting.

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• Emphasize the urgency of the situation.

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• Describe the physical harm to the victim.

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Possible benefits when APS Professionals Involves the CJS�

• Fulfills any mandated reporting requirements
• Identifying/reporting other forms of mistreatment,
• May provide the only way to protect the client (e.g. arrest of perpetrator, emergency temporary restraining orders)
• Preserving legal evidentiary chain
• Might be motivating the perpetrator to stop the abuse
• Provides evidence and documentation for potential prosecution
• Emphasizing the serious result to client

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How Common is Caregiver Neglect in ages 60+? �

• Over 1/3 of Elder Abuse Reports involve neglect (NAMRS 2018)

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• A 2010 study found that 47% of participants w/ dementia had been mistreated by their caregivers.
• 29.7% of them experienced neglect.

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Impact on Findings

• Findings are based on evidence
• Reasons for neglect are secondary and may impact service planning

Theories-Situational

• Caregiver is juggling own needs/crisis with needs of person needing care

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APS can:

• Asses if caregiver was “default” due to cultural expectations or other influences
• Explore the other demands and any solutions to minimize
• Assistance to caregiver- education on resources available

Theories- Exchange

• All social behavior involves the exchange of positive and negative interactions.
• Not receiving sufficient rewards so they punish (consciously or unconsciously) by withholding care
• What’s in it for me?

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APS can consider:

• Client’s eligibility for IHSS
• Assist client in creating financial arrangement that is more rewarding/equitable for caregiver
• Explore alternative caregiving support/supplemental care
• Provide support groups for caregiver

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Theories-Social Learning

• A perpetrator may have been raised in an environment where older adults and adults with disabilities were ignored and neglected.
• General American public’s perception on aging and people with disabilities can contribute

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APS can:

• Listen for ageist or ablest comments and discuss how they might be contributing for care
• Identify ways to provide care that meets the needs of the client
• Discuss care alternatives including supplemental care

Theories- Political/Economic

• Political/economic: A victim’s impairment may have result in the loss of their role as contributing member of society.
• Not seen as a priority to care for
• Sociopolitical Factors: People from certain cultures and ethnic backgrounds may be targeted based on political blame, ethnic bias, or other discrimination due to events that come to the public’s attention.
• Failure to provide adequate care is due to discrimination of person’s identities

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APS can:

• (With input from client) Determine if person is appropriate to remain in caregiving role
• Cross report to Law Enforcement when necessary
• Seek Order of Protection

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Theories-Psychopathology�

• Psychopathology: A perpetrator may have mental health and/or substance use disorder. Experiencing symptoms of a disorder may hinder the ability to care for another, including failure to provide care recipient with their medication and using it themselves or selling it for money.

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APS can:

• Provide mental health/SUD resources/referrals to the perpetrator
• Arrange for alternative care, especially if perpetrator seeks treatment opportunities
• If perpetrator is a danger to self, others or gravely disabled:
• Consult with local Psychiatric Emergency Response Team (or like team)
• Explore concerns with client and provide education and information for informed decision-making

Additional Neglect Dynamics

Inability to fulfill caregiving role due to:

• Physical or cognitive impairment (could be temporary)
• Necessary care is beyond caregiver’s abilities
• History of power dynamics
• No longer physically meets care recipient’s needs

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APS can:

• Provide resources on caregiver resource centers or respite care
• Consult with client’s medical provider(s) re: home healthcare
• Explore alternative caregiving options
• Explore Adult Day Healthcare Centers for respite

Additional Neglect Dynamics (continued)

Caregiver does not understand caregiving needs:

• May be due to differences in upbringing or culture
• Lack of education or training
• Not understanding full scope or expectation of care needs

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APS can:

• Connect the caregiver to outside support and education or training opportunities
• Consult with client’s medical provider re: options for home healthcare

Monetary or resources are not available:

• Includes social support
• Caregiver cannot afford to provide the care that is needed

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APS can:

• Consider if care recipient is entitled or eligible for new benefits
• Assist with enrollment

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Additional Neglect Dynamics (continued)

Caregiver is prior victim of the care recipient’s abuse

• May be retaliatory, learned or demonstrated

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APS can:

• If appropriate, suggest family counseling and provide resources/referrals
• Explore alternative caregiver arrangements
• Explore if an order of protection is desired or needed

Self-Fulfilling reasons

• Harm being done to cause pain/suffering, hasten death for financial gain, revenge

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APS can:

• Explore options of restraining orders
• Explore supportive decision-maker opportunities
• Explore alternative care

Additional Neglect Dynamics (continued)

Role Reversals

• Person providing care, now also needs care
• Caregiver has mental health condition
• Physical or developmental disability
• SUD and symptoms now require care

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Cultural and Social Factors:

• Interest of individual vs. community
• Demographics
• Language barriers

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APS can:

• Use cultural responsiveness in assessments and interviews
• Explore if client qualifies for additional services
• Explore respite care

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Identifying the Dynamics

• Read each case individually and determine if it meets caregiver neglect and which theories or dynamics might be occurring.

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Risk Factors vs. Risk Indicators

Risk Factors

• Conditions that put a person at risk of harm. These increase the likelihood that abuse or neglect has or will occur.

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Risk Indicators

• Observable signs that you can see or hear that indicate risk of abuse may be present.

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Client Risk Factors

• Isolated
• Limited mobility
• Difficulty communicating
• Memory impairments
• Distant or estranged family members
• Dependent on others for their basic needs
• Challenges with ADLs or IADLs
• Untreated disease and/or chronic illness
• Disoriented
• Use of assistive device

Risk Factors: Client’s History

• Previous APS History

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• Previous interactions with law enforcement

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• History of suspicious injuries

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• Recent decline in care or financial status

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• History of family disputes

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• Recent divorce

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• Recent change in Power of Attorney

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• History of poly victimization (experiencing multiple forms of mistreatment or abuse)

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Risk Factors: Client’s History (continued)

• Physical or cognitive disabilities

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• History of oppression

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• Learned helplessness

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• Depression

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• Feelings of
• Guilt, personal inadequacy, hopelessness, being a burden

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• Difficulties establishing boundaries

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Risk Indicators at a Glance

Physical indicators are:

• clues or signs that can be observed, collected, photographed and/or recorded.

Behavioral Indicators include:

• behaviors of the client or the perpetrator.

Environmental Indicators are:

• clues found in the client’s physical environment.

Indicators of Caregiver Neglect (Physical)

• Untreated disease or medical problem
• Inadequate/soiled clothing
• Poor hygiene
• Skin breakdown
• Diarrhea or urine burns to skin
• Over or under medicated
• Abandonment

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Physical indicators that require immediate attention:

• Decubitus Ulcers
• Dehydration

Indicators of Neglect (Behavioral)

• Fearful
• Anxious
• Agitated
• Angry
• Isolated/Withdrawn
• Depressed
• Ambivalent
• Confused/Disoriented
• Perceives self as helpless/powerless
• Reluctant to criticize perpetrator
• Ashamed

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Activity #5:

• In groups, develop questions for each behavioral indicator on Handout
• Seek open-ended questions
• Choose someone to report out

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What are ADLs and IADLs?

Risk Factors (Perpetrators)

• Trusted person
• Angry and resentful
• Depression
• Substance use
• Untreated mental illness
• History of family violence and/or abuse/neglect as a child
• Isolated, lacks social support
• Lacks impulse control
• Emotionally and or financially dependent on the care recipient
• Neurocognitive Disorders

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Risk Factors (Type of Caregiver)

Voluntary or Involuntary can be a risk factor due to:

• Expectations of family members
• Spoken and unspoken agreements
• Roles and expectations (temporary vs. permanent.)
• Level of care needed is likely to increase.

Indicators (Behavioral) of Alleged Perpetrators

• Isolates client
• Angry, aggressive behavior
• Indifferent
• Unrealistic expectations
• Does not show affection/empathy towards the client
• Perceives client as incompetent or demanding
• Acts burdened
• Won’t commit to medical care or additional services
• Conflicting accounts
• Blames the client

Identifying Risk Factors and Indicators

Using Barbara Case Example:

• Work in groups to:
• Identify decisions that created risks or should have raised “red flags”
• How might Barbara’s health and safety improved if different decisions were made?

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Ageism and Ableism

Stereotyping:

• Lacking capability – “senile”
• As non-people, invisible
• Powerless, lacking agency
• Out of touch
• Rigid

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Reality:

• Suspicious of formal systems & agency intervention
• Take longer to make decisions
• Take longer to engage than younger people because of cultural norms about sharing private matters
• Have difficulty communicating due to physical disabilities or cognitive impairments

Views on Death & Dying �

• Avoiding
• Helplessness
• Ignorance
• Withholding

Five Domains of Assessment

• Safety & Risk

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• Living Environment

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• Physical & Medical Impairment

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• Financial and Social Situation

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• Decision-Making Ability and Capacity

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Safety & Risk

• Safety issues for clients and professionals

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• Notifying law enforcement

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• Severity and duration of neglect

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• Previous intervention history

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• Client indicators of neglect

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• Signs of other forms of mistreatment – physical, sexual, financial

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Living Environment

• Dirty, chaotic living space

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• Multiple animals and/or vermin

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• In a high-crime area

Physical/Medical Impairments �

• Need of immediate medical treatment

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• Functional strengths & impairments

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• Denial

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• Immediate & long-term care unmet needs

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• Barriers to providing appropriate care

Financial & Social Situation

• Previous intervention history

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• Resources available

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• Client’s support network

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• Alleged perpetrator’s support network

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• Alleged perpetrator’s awareness / cooperation

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Decision-Making Ability and Capacity

• Ability to adequately process information in order to make a decision based on that information.
• Varies as result of:
• Physical or mental stress
• Complexity of the decision
• From morning to evening and day to day
• May affect either the client and/or the caregiver

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Client’s Right to Self-Determination

• Does client have the ability to appreciate, understand and describe and expression reason for decisions?

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• Clients who have been victimized and have the decisional ability to do so may refuse services

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• Legal incapacity is the judgement about one’s legal rights and responsibilities.

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• Clinical incapacity is a judgement about one’s functional abilities, including decision-making.

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• Legal proceedings may change some of the options provided to the client or family members.

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Assessing Neglect: Activity

• Review Enid’s case and assess for each domain:
• Safety/Risk
• Living Environment
• Physical/Medical Impairments
• Financial/Social Situation
• Capacity

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• What are your concerns in each domain?

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• What more information do you need for each domain?

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Interviewing Best Practices

General Tips:

• Review any history available
• Practice interviewing style with trusted colleagues
• Be aware of possible responses
• Avoid questions assuming guilt
• Avoid questions that prompt “Yes” or “No”

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With Allegations of Caregiver Neglect:

• Questions that help determine if the person had “care or custody”
• Questions that help determine if they knew or should have known level and type of care needed

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Interviewing with Open-Ended Questions

• Review handout
• Video Demonstration Comparison

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When the Alleged Perpetrator Begins to Talk

• Make it easy
• Identify with their needs
• Be empathetic
• Offer support
• What was their experience?
• Precursor or Activating event
• History
• Bottom line

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Do not confuse building rapport with and respecting the alleged perpetrator with condoning their behavior.

Maintaining Neutrality �

• Frame questions in neutral, objective language

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• Use same tone for addressing both the client and alleged perpetrator

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• Maintain a neutral facial expression

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• Use active listening skills

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• Be respectful

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• Do no react to alleged perpetrator’s testing behavior

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Addressing Justifications or Defenses

• Individually, identify which three considerations or questions assess for caregiver neglect based off of each justification/defense provided.

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Other Considerations

• Take notes and document

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• Interview each person alone, whenever possible

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• Be professional and allow for rapport building

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• Tell them the reason for your visit

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• Give the alleged perpetrator a chance to cooperate

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• Be clear about the process and purpose of investigation and interview

Interviewing to Prevent Further Reoccurrences

“This is very serious”

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“No one can continue like this. What’s needed to ensure they get the care required?”

“Under our state’s laws, this might be considered abuse (or a crime)”.

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“What would be a plan for providing good care?”

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Interviewing Skills

• In pairs and using applicable handouts, practice interviewing Jacob.
• The goal of this experiential activity is foster a learning environment that supports your ability to practice new skills throughout the exercise.

Developing a Service Plan

Clearly Define Roles and Expectations

• Who will do what tasks?
• When and how often will they be performed?
• Where will they be performed?
• What rewards (financial or emotional) will be provided?
• How will quality of care be evaluated?
• Where and how will problems be reported?
• What are the penalties for failure to meet expectations?

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Flexibility to accommodate change

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Safety and risk

Living Environment

Physical & Medical Impairment

Financial & Social Situation

Capacity

Safety/Risk�

• The APS professional’s perception of the causes of the problem and level of risk

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• Emergency services

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• Voluntary separation

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• Orders of Protection or Notifying Law Enforcement

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• Least restrictive interventions

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• Short and long term risk reduction

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Living Environment

• Immediate environmental changes

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• Animal care

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• Cleaning

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• Emergency repairs

Physical/Medical Impairments�

• Physical/Medical Impairments

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• Medications

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• Assistive devices

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• Rehabilitation Services

Financial/Social Situation

• Client’s informal/formal resources

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• Client’s service eligibility

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• Legal actions needed to protect and manage assets and/or obtain benefits

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• Sensitive to client’s cultures

Capacity

• Client’s perception of the problem

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• Client’s capacity to consent to or refuse services

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• Client’s strengths, needs, wishes, and motivation

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• Alleged Perpetrator’s capacity

Services for Caregivers

• Take into account the Caregiver as a whole person-
• Respite care and support
• Health and functionality

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• Caregiver training

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• Social support

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• Behavior management training

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• Other resources?

Developing a Service Plan

• Use the previous case of the 59lb. Woman and for each domain, identify:
• The concern
• The objective of the case plan
• What services you would offer or initiate

Wrap & Evaluation�

• Note two key takeaways from today’s training
• An “ah-ha” moment, a helpful resource, something you will use in your work, something you learned, etc.

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• Thank you for what you do for our community

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• Participate in active self-care today and this week

Thank You!

We envision a world where �the quality of life for individuals, organizations, and communities �is transformed into a healthier place