Mental Health and Wellness in the Caregiver Community

Charles F. Small, LCSW

Senior Research Therapist, TREAT Lab Chicago at Rush University Medical Center

Lecturer, Crown Family School of Social Work, Policy, and Practice

February 22, 2023

Brief Bio

• Licensed Clinical Social Worker, graduated from Loyola University of Chicago School of Social Work
• Worked primarily with veterans at Jesse Brown VA Medical Center and Road Home Program at Rush University Medical Center
• Specialize in treating trauma using evidence-based psychotherapy
• Currently working as a research therapist at TREAT (Treatment Response Efficacy Access and Timing) Lab at Rush University Medical Center
• Teach at Crown Family School of Social Work, Policy, and Practice (Veterans and Trauma courses)

Disclaimer/Conflict of Interest Statement

• No conflict of interest in presenting material relevant to caregiver mental health today

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Agenda

• Defining “Caregiver”
• Defining “Mental Health and Well-being”
• Unique mental health concerns of caregivers
• Sources of support
• Systemic
• Community
• Individual (“Self-care”)

What do we mean by “Caregiver”?

• “…a person who tends to the needs or concerns of a person with short- or long-term limitations due to illness, injury, or disability” (source: www.hopkinsmedicine.com)

Who are caregivers?

• “There are only four types of people in the world: (1) those who have been caregivers, (2) those who are currently caregivers, (3) those who will be caregivers, and (4) those who will need caregivers” –Rosalyn Carter
• Estimates in 2009 indicate that there are upwards of 65.9 million “informal” or unpaid family caregivers in the United States, with the majority of those receiving care being aged 50 and older [National Research Council (US) Committee on the Role of Human Factors in Home Health Care, 2010]

Professional versus Family Caregiver*

Professional

• Paid for caregiving services rendered
• Must receive training/certification
• “Boundaried” work schedule
• Intentional role identification

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Family/ “Informal”

• May or may not be compensated financially
• May or may not seek specialized training
• More permeable boundaries around schedule (“no days off”)
• Unplanned/unanticipated role

Mental Health and Well-being occurs when:

• An individual is able to meet their biological, emotional, and social needs
• The capacity to tolerate and manage stressful situations is present and not overwhelmed
• The environment (“context”) in which an individual exists is supportive of their basic biological, emotional, and social needs
• An individual is able to access adequate support and nurture/develop skills to manage life stressors

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Caregiver Roles

• Administering medication
• Wound care
• Organizing scheduling of medical/psychiatric appointments
• Physiotherapy
• Ambulatory services
• Activities of Daily Living (bathing, feeding, exercise, etc)

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Other Roles (primarily for family caregivers)

• Primary “breadwinner”
• Power of Attorney
• Case manager (applying for benefits, keeping track of bills, etc.)
• Therapist
• Spouse/parent/sibling/friend
• Confidant
• Scheduler
• Cheerleader
• Others?

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Nature of Charge’s Needs Impact Caregiver’s Role (and the mental health impact)

• Example:
• Joel is a certified Home Health Aid who works part-time with Darryl, a 68-year old retired former Firefighter. Darryl has needed help organizing his multiple medications, as he has recently undergone a knee replacement surgery. Darryl also needs help moving from his reclining chair to the bathroom and kitchen, as well as some help with his post-surgical physical therapy exercises. Joel meets with Darryl 3 days a week for a half-day. During his visits, Joel has noticed that Darryl’s spouse Roberta will often be sitting in the kitchen drinking wine and watching TV, and appears to be intoxicated. Joel has also noticed that, besides the days that he visits, Darryl often forgets to take his antibiotics, and that his bandages often are unchanged. Additionally, Darryl’s home often smells of rotting food and garbage, and food containers and other trash items are strewn about the home.
• What are some of the sources of emotional stress that might impact Joel in working with Darryl and his other clients? How might this impact him, emotionally?

Example Two

• Tericia (29) is a caregiver to her uncle Marcus, a 49-year-old Marine Corps veteran who served in Iraq in 2006-2007. Marcus is 100% service-connected for PTSD as well as burn scars to 30% of his body from an IED blast. Tericia lives along with Marcus in Chicago, as their only surviving family lives in Texas and Louisiana. Marcus is currently on methadone maintenance for a previous opiate addiction, but uses alcohol when we cannot sleep due to nightmares about his deployment. Tericia is in school to complete her associate’s degree, but often misses class to take Marcus to his VA appointments. Additionally, Tericia has had to call the police on two occasions when Marcus became enraged during a period of binge-drinking. Tericia loves her uncle, but struggles with feelings of guilt when she imagines getting married, having a family of her own, and moving away from Chicago
• What are some of the sources of stress that Tericia might face in providing care for Marcus? How might this impact her emotionally?

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Some Statistics (2015 AARP Caregiver Report, via the National Alliance of Caregiving)

• Negative impact on caregiver health over time (the longer someone is a caregiver, the more detrimental it is to caregiver’s health, based on self-reports of caregivers)
• Caregivers who are spouses or a family member are more inclined to report their health as “fair” or “poor”
• Caregivers of someone with a mental health/psychiatric diagnosis are more likely to report their health and well-being as “fair” or “poor”
• Perceived lack of choice in caregiving role is associated with emotional stress
• White caregivers are more likely to report emotional distress in caregiving than African-American, Hispanic, and Asian American caregivers

Mental Health Impact of Caregiving

• “Caregiver Burden” is a descriptive term which can include:
• Increased depression and anxiety (and related mental health diagnoses)
• Sleep difficulty
• Increased vulnerability to substance use/dependence
• Vicarious traumatization/PTSD
• Compassion fatigue
• Financial Stress
• Intimate Partner Violence
• Guilt/Shame (for feeling burdened or overwhelmed)
• Negative health outcomes (medical and psychiatric)

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• Many of these mental health concerns can mirror or “compliment” psychiatric issues experienced by caregiver’s charges
• Example: First responder may feel guilty for “being a burden”, and experience suicidal ideation 🡪 Family member may feel normal caregiver burden, but suppress this due to feelings of guilt, and experience depression as a result

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Managing Caregiver Burden: Sources of Support

• Self Care: Defined by WHO as “the ability of individuals, families, and communities to promote health, prevent disease, maintain health, and to cope with illness and disability with or without the support of a healthcare provider”
• Emotional self-care strategies may be helpful in providing respite to caregivers who may be experiencing burnout or being emotional and physically overwhelmed (as outlined in previous slides)

Self Care Strategies

• Scheduling regular periods of respite (may require support from others)
• Identifying non-caregiving activities/behaviors that are enjoyable, relaxing, unrelated to caregiving role
• Attending to behaviors that positively impact overall health and wellbeing (adequate sleep, nutrition, exercise, social relationships, creative outlets)
• Emotional health support (support groups, individual therapy)
• Reflecting on the “why” of caregiving role (what values are present, why is this something you are doing?)
• For professional caregivers, identifying a “Plan B”

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Limits of Self-Care

Limits of Self Care

• Places burden of healing on the individual, who may be overwhelmed already
• Neglects to take into account systemic failures (more on this later)
• Assumes that individual know what behaviors need to change or how to advocate for themselves
• Not all behaviors that feel good are actually good for us (example: “Revenge Bedtime Procrastination”)

Community Support

• Caregiving can be an isolating experience, impacting social, familial, and community relationships
• COVID-19, and other social factors have exacerbated this, insulating us from our communities
• Identify family members who may be able to support in the ways that they are able/willing
• What local resources are available (think: support groups, volunteer organizations, neighborhood social relationships)?

Systemic Failures and Opportunities

• What federal or state resources exist that provide real support to caregivers (financial, material, education, mental health access, etc.)? Consider the breakdown of federal, state, and local budgets
• Often, the burden of accessing care and respite resources falls to the individual to navigate, which can be complex and overwhelming in itself
• Identify advocacy groups/individuals who are invested in policy changes, improvement in systems of care/public health
• Advocacy and policy should also fall to communities and families who are not directly involved in caregiving roles

National Caregiver and Trauma Care Resources

• National Alliance for Caregiving (www.caregiving.org)
• National Alliance on Mental Illness (www.nami.org)
• VA Caregiver Support Program (www.caregiver.va.gov)
• AARP Resources for Caregivers and Families (www.aarp.org)
• National Center for PTSD (www.ptsd.va.gov)

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Questions?

• csmall1@uchicago.edu
• Charles_F_Small@rush.edu

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