PROJECT ECHO Caregiver Support JABSOM Department of Geriatrics

PROJECT ECHO: Caregiver Support JABSOM Department of Geriatrics

Objectives • Understand factors of caregiver stress and burnout • Recognize warning signs • Identify ways you can help caregivers

Case • Ms. K. S is a 94 -year-old female who lives in a home with her daughter. She suffered a Cerebral Vascular Accident (stroke) 3 years ago, and had Left side weakness. Since her stroke, she has had cognitive decline and was diagnosed with Vascular dementia about 2 years ago. • She has difficulty feeding herself and all of her ADLs are dependent. The stroke has left her extremely weak, and she is confined to a wheelchair during daytime. • She continues to recognize her family, but has become increasingly confused to place and time. Her 68 -year-old daughter, Kim, devotes the majority of her time to attending to her mother’s care at home. Kim is her primary care giver and her sister who lives one hour away comes to help her over the weekend. • During your check up on Ms. K. S, Kim looked tired. • When Kim was asked “How are you doing? How is you stress level? ”, her eyes started tearing.

Case • Kim stated she has been in poor health herself, and has been diagnosed with Type II Diabetes, hypertension, and kidney problems. She has lost almost fifteen pounds in the last five months. • Although her sister is helping her over the weekend, she feels she is too busy to take care of herself. • Her sister thinks they need to place Ms. K. S in the NH, however she does not want to because she believes MS. K. S does not want to go to the NH. • She wants to visit her daughter in mainland to attend her collage graduation, but she does not think her sister can take care of their mother that long.

Caregiver Burnout • A state of physical, emotional, and mental exhaustion • May be accompanied by a change in attitude • Occur when caregivers don't get the help they need, or if they try to do more than they are able (physically or financially)

Caregiver Burnout May experience: • Fatigue • Stress • Anxiety • Depression • Have guilty feeling if they spend time on themselves rather than on their ill or elderly loved ones • May think they are “weak” because they feel overwhelmed while other people seem to be fine

Causes of Caregiver Burnout • Lack of training for caregiver duties • Nursing tasks, medication management, managing finances, knowledge of dementia • Role confusion • Both caregiver and care receiver may struggle with role changes • Unrealistic expectations: of self and care receiver • Lack of control • Unreasonable demands

Plan for the future • • Legal Matters Care options Cost of care Safety ex. Driving

Legal Matters • Capacity and Competence • Health care decisions and Financial care decisions • Powers of Attorney • Court-Appointed Guardians • Trustees • Representative Payees

Care Options • Daycare • Respite Care • Hired Care (Home Health Care) • Care home or Foster home • Assisted living • Intermediate care Nursing Home

Cost of care • Insurance: Medicare, Medicaid COBRA Life Insurance Long Term Care Insurance Disability Insurance • Retirement benefits • Personal assets • Government assistance • Community support services

Safety • Talk about driving • Assess home for safety • Bedroom upstairs? • Handrails? • Trip hazards? • Risks of Wandering or getting lost of loved ones (Medic. Alert, Alzheimer’s Association Safe Return Program)

Signs of Caregiver Burnout • Withdrawal from friends and family • Loss of interest in activities previously enjoyed • Feeling blue, irritable, hopeless, and helpless • Changes in appetite, weight, or both • Changes in sleep patterns • Getting sick more often • Feeling of wanting to hurt themselves or the person for whom they are caring • Emotional and physical exhaustion • Excessive use of alcohol and /or sleep medications • Irritability

How Can You Help? • Start the conversation about caregiver stress • Make asking about caregiver duties a standard part of intake/follow up information gathering for all patients • Look for signs of burnout • Screen for diagnosable mental health issues: depression/anxiety • Refer to treatment • Normalize/validate their experience • “most caregivers find it very tough at times, but no one talks about it” • ”most caregivers have a hard time seeking help, but most that do are glad they did” • “It makes so much sense to feel ______. This is not a role you were trained for. Would you like to talk about some people/programs you can call to get information and support? ” • Offer recommendations:

Encourage caregivers to: • Speak up • Spread the responsibility • Set up a regular check-in • Say “Yes” when someone offers assistance • Be willing to relinquish some control

What you can recommend • Reassure them: Self care is not selfish! • Maintain their personal relationships • Prioritize activities that bring them enjoyment • Find ways to pamper themselves • Make themselves laugh • Get out the house • Take care of their health • Join a support group and connect with other resources

Case • Reassure: Self care is not selfish! • Family therapy • Encourage to take time off : Utilize available resources -Daycare -Hired help (Home Care) -Respite care • Join a support group and connect with other resources -Alzheimer’s association

COMMENTS? QUESTIONS? OTHER CASES?