1. Understanding the Experiences of Family Caregivers for Younger and Older Adults with Serious Mental Illness (SMI) Elizabeth Corsentino Victor Molinari, Ph.D., ABPP, Advisor Lori Roscoe, Ph.D., Committee Member Amber Gum, Ph.D., Committee Member Funded by: The USF Office of Undergraduate Research

2. Terms Caregiver- a person who provides informal, unpaid care and has regular contact with a person with SMI Serious Mental Illness (SMI)- longstanding psychiatric problems that significantly interfere with day-to-day functioning, including schizophrenia, bipolar disorder, and major affective disorder

3. Purpose The purpose of the present study was to examine the experiences of informal caregivers of persons with SMI, focusing on the general challenges impacting caregivers as relatives with SMI age.

4. Participants Recruited through The Advocate, a newsletter sent to members of the National Alliance on Mental Illness (NAMI)

5. Survey Instrument Survey instrument was available online at www.surveymonkey.com or by mail. www.surveymonkey.com Survey consisted of 23 questions: Demographic Information Current Experience/ Level of Planning Over 55 years old Under 55 years old How caregiving has changed How they envision it will change

6. Results: Caregiver Profile GENDERFrequency% Female6082% Male1318% MeanRange Age6227-88 Years of Caregiving Experience 194-50 RELATIONSHIP STATUS Frequency% Parent5574 Spouse1014 Child45 Sibling34 Other23

7. Results: Care-recipient Profile MeanRange Age4011-75 Age at diagnosis 246-62 GENDERFrequency% Female2534% Male4866% DIAGNOSISFrequency% Schizophrenia4156% Bipolar Disorder1520% Major Affective Disorder 23% Other1014% More than one diagnosis 68%

8. Quantitative Results: Caregiver Stress Nearly 70% of caregivers reported that caregiving was somewhat to very stressful during the past 3 months. The three top reasons for stress were: Communication difficulties Behavior problems Planning for the future

9. Quantitative Results: Plans for the Future 60% of caregivers had made no plans for the future in the event they were no longer able to provide care in the future for loved ones with SMI

10. Quantitative Results: Caregiving Over Time Expectations of Caregivers of Persons Under 55: 39% say more difficult 39% say the same 22% say easier Perceptions of Caregivers of Persons 55 and Older: 75% say more difficult 19% say the same 6% say easier

11. Qualitative Results: Caregivers of Persons Under 55 “What do you envision will become easier as your loved one ages?” Frequent responses: “Nothing” Care-recipients becoming more accustomed to routine Improvements in medication or a cure

12. Qualitative Results: Caregivers of Persons Under 55 “What do you envision will become more difficult as your loved one ages?” Frequent responses: Caregivers ability to provide care will become more difficult due to physical incapacity Care-recipients physical health needs will increase Financial stability will decrease

13. Qualitative Results: Caregivers of Persons 55+ “What aspects of caregiving have improved as your loved one has aged?” Frequent responses: Nothing Care-recipient slowing down with age

14. Qualitative Results: Caregivers of Persons 55+ “What aspects of caregiving have become more difficult as your loved one has aged?” Frequent responses: Care-recipient’s physical health Caregivers’ physical health Financial stability

15. Discussion The overwhelming majority of respondents were aging parents Caregivers prefer loved ones to live with family if they could no longer provide care, but rarely communicate these intentions. Discrepancy between caregiver perceptions of the future and reality

16. Strengths and Limitations Strengths Survey available to those with and without internet access Quantitative and qualitative information Limitations Response rate low, but cannot be exactly determined Limits to generalizability

17. Implications Future directions Larger scale, mixed method approach Possibly a longitudinal design Consider reasons why some caregivers are able to sustain care in the community & others are not Need more advocacy for caregivers How can we help relieve their burden & assist with planning – it is a societal responsibility as well as a family responsibility

18. Acknowledgments Thesis Advisor: Dr. Victor Molinari Committee Members: Dr. Amber Gum Dr. Lori Roscoe National Alliance on Mental Illness (NAMI) USF Office of Undergraduate Research

19. “It is very easy for the caregiver to burn out, experience depression, and ‘lose’ their life.” “It is an on going caregiving experience that I expect to have for the rest of my life. I do not feel bad about that. I wish for him that it was not so.” Acknowledgments Participating Caregivers “How much can I write? This whole process has been the most difficult time of my life. While mental illness [sic] effects the individual, it is a family issue, it is intertwined.”