Caregiver Orientation, Education & Support Linda C. Elliott, Ph.D., LISW-S, ATR-BC, CNM, CPM, RMT Crystal Wallace, MSW, LSW November 3, 2010

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Response to the Quiet Caregiver Crisis Goal: To respond to the needs of caregivers and care recipients in informed, ethical, and compassionate ways.

Objectives: Attendees will:  Understand the multiple needs and challenges facing caregivers today.  Demonstrate greater knowledge and compassion when caregiving and/or assisting caregivers to fulfill their arduous responsibilities.  Examine interventions that can address the physical, intellectual, and emotional issues that caregivers experience.  Support caregivers efforts through advocacy, education, orientation, and other appropriate interventions. 2

Introduction:  Who is a caregiver?

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Introduction: Glossary of Terms Caregiver: Anyone who provides help to someone

else who is incapacitated in some way and needs assistance with the tasks of daily living. Care Recipient: Anyone who benefits from the services provided by a caregiver, usually the very young, the old, and the disabled.

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Introduction: Glossary of Terms (continued): Crisis: An emotionally significant event, radical change of status in a person’s life or crucial time or state of affairs whose outcome will make a decisive change for better or worse. Quiet Crisis: A crisis that is smoldering under the surface that the general population is not aware of and/or admitting. Example: The faulty levy system before Hurricane Katrina 5

Scenario 1: Marilyn  40-year-old single woman  Grandmother had Alzheimer Disease  Caring for 75-year-old aunt with Alzheimer Disease  Mother just diagnosed with Alzheimer disease

“What is going to happen to me?”

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Scenario 2: Joanne  65-year-old married woman  Caring for 97-year-old mother  Takes mother to doctor for fecal  impaction  Doctor ignores caregiver’s concerns and prescribes laxatives  Mother begins vomiting blood and dies in hospital

“He wouldn’t listen to me. How can I ever forgive myself ?”

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Scenario 3 Jonathan  36-year old male caring for 70-year-old mother who lives with him  Older brother has POA/financially exploits mom  Jonathan pays all mother’s expenses with own funds

“I’m meeting with my brother this weekend, and we may come to blows.” 8

Scenario 4 “My father is in total denial, and I feel so overwhelmed and alone.”

Marsha  34-year old woman caring for her grandmother  Works and has children of her own  Parents offering no help or support

“I am so stressed and frustrated, and I can’t understand why no one will help me out!” 9

Statistics Who Are Informal Caregivers?  29% of the U.S. population or 65 million people.  Approximately 34% are men.  Approximately 66% are women. Of this number, more than 37% have children and/or grandchildren living with them.

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Statistics (continued): Who are informal caregivers?  1.4 million are children ages 8 to 18. Fortunately most are not the sole caregiver.  The pool of caregivers is dwindling. People over 60 expected to rise by 2.3% Percentage of caregivers will only increase 0.8%

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Statistics (continued): Caregiver Economics  Female caregivers are 2.5% more likely to live in poverty and need Supplemental Security Income (SSI).  Median income of caregiving families is 15% lower than non-caregiving families.  47% of working caregivers report that increases in caregiving expenses have caused them to use up most or all of their savings.

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Statistics (continued): Impact of Caregiving on Caregivers’ Physical Health Studies have found that caregivers may have:  Increased blood pressure  Increased insulin levels  Impaired immune systems  Increased risk of cardiovascular disease

 A 63% higher mortality rate than noncaregivers of the same age 13

Statistics (continued): Impact of Caregiving on Mental and Emotional Health Studies consistently report:  Higher levels of depressive symptoms  Higher usage of psychotropic drugs than non-caregivers  Increased risk of abusing care recipient

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Statistics (continued) Caregiver Assistance and Support  78% of older adult care recipients depend upon family members for their care.  Up to 75% of those caring for older adults with Alzheimer’s disease are aware that help exists.  Assistance and support of caregivers benefits both the caregiver and care recipient.

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Comparison: Adult Day Program Caregivers - 1990

Adult Day Program Caregivers - 2010

 Majority – daughter caring for parent.

 Mothers, daughters, fathers, sons, grandnieces and nephews, neighbors, and others.

 Not working outside home, working part-time or retired.

 Working, caring for multiple generations, left work to serve as a caregiver.

 Stressed but coping fairly well. Polite and friendly.

 Extremely stressed, sick, and overwhelmed Easily angered.

 Income low but sustainable.

 Income a major worry.

 Many unfamiliar with available services.  More familiar with available services and able to find them.  Have some time to care  Have little or no time to care for themselves. for themselves.  Hesitant to ask for help.  Want help but are often too

busy to use it. 16

BR ADULT DAY PROGRAM Caregiver Initiatives 1990’s:  Support Groups  Focus Groups

2000’s  Innovative Approaches Support Groups with Expressive Arts Activities  Integrative Approaches for Caregiver Orientation, Education and Support 17

Support Groups We provided opportunities for caregivers to:    

Share experiences. Support and celebrate one another. Obtain information. Engage in self-healing through expressive arts activities.  Learn interventions to use with their care recipients.

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Support Groups (continued) Challenges:  Caregivers were too busy caregiving to attend meetings regularly.  Finding a time that suited all caregivers was impossible.  We offered to care for care recipients during meetings, but the care recipients kept disrupting meetings by trying to find their caregivers.

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Caregiver Orientation Understanding how the proper timing of the sharing of information can have a positive effect on the communication process…  The Assessment: Family arrives in crisis. Critical information shared and documents signed. Caregiver Orientation scheduled for 30 days after client start date  Client starts and attends the program  Caregiver attends scheduled Orientation 20

Caregiver Orientation (continued) …understanding is key  Two hour sessions w/information

folders, refreshments & giveaways  Agenda I. Welcome & Introductions II. Brief history of BRI/ADP III. Recap Assessment & explain/discuss

signed documents IV. Introduce/Describe on site services V. ADP/BRI Policies & Procedures VI. Other: Caregiver concerns and comments regarding past 30 days (problem solving) VII. Q & A

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Caregiver Orientation (continued) Response and Results Response

Results

 Acknowledge the crisis

 Engagement

 Understand the crisis

 Relationship with staff

 Support the caregiver

 Understanding of services

 Provide solutions

 Trust  Share experiences  Support and celebrate one

another (caregivers)  Obtain information 22

Other Caregiver Initiatives Present and Future:  Constant Communication  Interdisciplinary Case Conferences  Calendar of Events  Quarterly Newsletter  Client/Caregiver/Family Events  Education Sessions  Family Therapy 23

Summary Remarks

One person caring about another represents life’s greatest value. Jim Rohn

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We have the responsibility to: Respond to the needs of caregivers and care recipients in informed, ethical, and compassionate ways. 25

through: Understanding, Demonstrated

knowledge and compassion, Interventions, and Support

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We are all caregivers and care recipients. Let us join our common humanity, to recreate ourselves and our world. 27

© 2010 by Linda C. Elliott and Crystal Wallace. All rights reserved.

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