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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.

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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


Terms
Terms Younger and Older Adults with Serious Mental Illness (SMI)

  • 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


Purpose
Purpose Younger and Older Adults with Serious Mental Illness (SMI)

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.


Participants
Participants Younger and Older Adults with Serious Mental Illness (SMI)

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


Survey instrument

How caregiving Younger and Older Adults with Serious Mental Illness (SMI)

has changed

Over 55 years

old

Current

Experience/

Level of

Planning

Demographic

Information

Under 55 years

old

How they

envision it will

change

Survey Instrument

  • Survey instrument was available online at www.surveymonkey.com or by mail.

  • Survey consisted of 23 questions:


Results caregiver profile
Results: Caregiver Profile Younger and Older Adults with Serious Mental Illness (SMI)


Results care recipient profile
Results: Care-recipient Profile Younger and Older Adults with Serious Mental Illness (SMI)


Quantitative results caregiver stress
Quantitative Results: Younger and Older Adults with Serious Mental Illness (SMI)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


Quantitative results plans for the future
Quantitative Results: Younger and Older Adults with Serious Mental Illness (SMI)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


Quantitative results caregiving over time

Expectations of Caregivers of Persons Under 55: Younger and Older Adults with Serious Mental Illness (SMI)

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

Quantitative Results:Caregiving Over Time


Qualitative results caregivers of persons under 55
Qualitative Results: Caregivers of Persons Under 55 Younger and Older Adults with Serious Mental Illness (SMI)

“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


Qualitative results caregivers of persons under 551
Qualitative Results: Caregivers of Persons Under 55 Younger and Older Adults with Serious Mental Illness (SMI)

“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


Qualitative results caregivers of persons 55
Qualitative Results: Caregivers of Persons 55+ Younger and Older Adults with Serious Mental Illness (SMI)

“What aspects of caregiving have improved as your loved one has aged?”

Frequent responses:

  • Nothing

  • Care-recipient slowing down with age


Qualitative results caregivers of persons 551
Qualitative Results: Caregivers of Persons 55+ Younger and Older Adults with Serious Mental Illness (SMI)

“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


Discussion
Discussion Younger and Older Adults with Serious Mental Illness (SMI)

  • 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


Strengths and limitations
Strengths and Limitations Younger and Older Adults with Serious Mental Illness (SMI)

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


Implications
Implications Younger and Older Adults with Serious Mental Illness (SMI)

  • 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


Acknowledgments
Acknowledgments Younger and Older Adults with Serious Mental Illness (SMI)

Thesis Advisor:

Dr. Victor Molinari

Committee Members:

Dr. Amber Gum

Dr. Lori Roscoe

National Alliance on Mental Illness (NAMI)

USF Office of Undergraduate Research


Acknowledgments1
Acknowledgments Younger and Older Adults with Serious Mental Illness (SMI)

Participating Caregivers

“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.”

“It is very easy for the caregiver to burn out, experience depression, and ‘lose’ their life.”

“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.”


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