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Caring for Caregivers
Dr. Dawn-Elise Snipes

Objectives
~	Explore what caregivers really are
~	Identify some of the things caregivers do
~	Identify the consequences of adopting a caregiver role
~	Review cognitive behavioral strategies to help caregivers prevent physical, emotional and interpersonal problems

Analogy
~	Caregiving can be though of like a company merger (Integrative Behavioral Health)
~	Change in location or alterations in current structure
~	New policies and procedures
~	New supervisors telling you what to do
~	Alterations in mission and vision
~	Not everyone in the company is on board with the merger
~	Change causes crisis

Who
~	Formal caregivers: Social workers, counselors, nurses, clergy
~	Informal caregivers: Family and Friends
~	Tasks
~	Activities of daily living (bathing, feeding, toileting)
~	Meal prep
~	Shopping
~	Cleaning / laundry
~	Yard work
~	Animal care
~	Companionship
~	Bill paying


Who
~	Issues (not all inclusive)
~	Infants/children (bio parents or alternative caregivers)
~	Aging (memory issues, balance issues, health conditions that must be managed)
~	Dementias
~	Schizophrenia
~	Fetal Alcohol Spectrum Disorders
~	Autism Spectrum Disorders
~	Downā€™s syndrome
~	Chronic medical conditions: Kidney/liver/heart failure
~	Acute injury/illness: Hip replacement, amputation, open heart surgery


Tasks
~	Prevention of 
~	Depression, anxiety, addiction
~	Stress-related health issues
~	Family dysfunction
~	Job loss
~	Financial hardship

Behavior = Communication
Physical Issues
~	Sleep / Circadian rhythms
~	Respite
~	Fatigue from chronic stress
~	Management of current health personal conditions
~	Nutrition and hydration
~	Pain from new physical demands

Affective
~	Emotional support
~	Acute stress reactions if a trauma was involved
~	Baby born with a severe defect
~	Adult having a stroke or heart attack
~	Grief about their loved oneā€™s condition
~	Grief about their change in circumstance
~	Anxiety about their loved one and their abilities to care/cope
~	Frustration at subsequent problems (children acting out, job challenges, caregiver turnover)
~	Guilt about anger, resentment and happiness
~	Feelings of emptiness if the condition resolves or when the loved one passes

Affective
~	Validation
~	Caregivers with positive experience viewed caregiving as a responsibility; the opposite viewed it as having 'no choiceā€™
~	Positive experiences
~	Empowerment framework 
~	How are you coping better today
~	How is the person doing better today
~	In what ways is your help improving the quality of life for the person
~	Journaling
~	Dialectics 
~	Reminiscence

Cognitive
~	Health literacy regarding the 
~	Condition, prognosis
~	Confabulation
~	Delusions/hallucinations
~	Competence/confidence at implementing care plan
~	Training and support of caregivers in the home setting should incorporate caregiversā€™ perspectives
~	Mindfulness and strategies to assess and understand the changes within themselves (physical, emotional, attitudinal, motivational)

Cognitive
~	Resilient caregivers exhibit attributes including 
~	Determination and curiosity
~	Flexibility and resourcefulness
~	Positive thinking finding positive gains despite hardship, such as a sense of purpose, increased closeness with the SO, and feelings of mastery and gratification
~	Self-efficacy
~	Mindfulness 
~	Effective communication social support 
~	Spirituality / Sense of meaning and connectedness

Cognitive
~	Acceptance of aversive experiences and commitment to personal values when caring for someone who has a chronic condition or is in significant pain (Emotional of physical)
~	Subjective appraisal Caregivers who believe the problem behaviors are voluntary tend to experience more distress than those who view the behaviors as a consequence of the condition or developmental abilities.
~	People do the best they can do with the tools they have at any given time in any given circumstance 
~	Contextual CBT
~	FCBā€“ Unhook from emotional reasoning

Environmental/Financial
~	Case management assistance tapping into available
~	Consumer Directed Care programs  Insurance (SSI/SSDI/Medicare/Medicaid/Private insurance/Long term care insurance)
~	Financial support programs for
~	Nutrition
~	Structural alterations
~	Supplies
~	Personal housing or loved oneā€™s housing or utilities
~	Resources for assuring environmental safety
~	Community resources for support, respite and recreation
~	Awareness of online employment opportunities

Relational
~	Cultural values  
~	Traditional beliefs about family obligations in Asian and Latino/Hispanic communities may lead to dysfunctional thoughts emphasizing the need for complete dedication to caregiving at the expense of oneā€™s own needs and feelings. 
~	Other cultural beliefs may focus more on independence, wealth and success and promote institutional caregiving instead of family.
~	Engaging in social activities which were meaningful before the life-event.

Summary
~	When someone suddenly is charged with the care of another regardless of the reason, it generally alters all aspects of their life.
~	There are a multitude of physical, emotional and cognitive reactions that can be explored, normalized and addressed with the individual.
~	Too often informal caregivers are treated as ancillary to the treatment team or patient which leaves them feeling invalidated, ignored, unsure of themselves and confused
~	Ideally all caregivers will be provided with tools to understand the diagnoses, effectively implement care, know how to request help and maintain their own health and wellbeing.