Understanding the Experiences of Family Caregivers for

Younger and Older Adults with Serious Mental Illness (SMI)

Elizabeth Corsentino

Victor Molinari, Ph.D., ABPP, AdvisorLori Roscoe, Ph.D., Committee MemberAmber Gum, Ph.D., Committee Member

Funded by: The USF Office of Undergraduate Research

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

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.

Participants

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

Survey Instrument

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

Survey consisted of 23 questions:

DemographicInformation

CurrentExperience/

Level of Planning

Over 55 yearsold

Under 55 yearsold

How caregivinghas changed

How theyenvision it will

change

Results: Caregiver Profile

GENDER Frequency %

Female 60 82%

Male 13 18%

Mean Range

Age 62 27-88

Years of Caregiving Experience

19 4-50

RELATIONSHIP STATUS

Frequency %

Parent 55 74

Spouse 10 14

Child 4 5

Sibling 3 4

Other 2 3

Results: Care-recipient Profile

Mean Range

Age 40 11-75

Age at diagnosis

24 6-62

GENDER Frequency %

Female 25 34%

Male 48 66%

DIAGNOSIS Frequency %

Schizophrenia 41 56%

Bipolar Disorder 15 20%

Major Affective Disorder

2 3%

Other 10 14%

More than one diagnosis

6 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

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

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

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

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

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

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

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

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

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

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

“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.”