Impact of Behavior Management verse Telephone Support to Reduce Depressive Symptoms and Perceived St

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Impact of Behavior Management verse Telephone
Support to Reduce Depressive Symptoms and
Perceived Stress in Chinese Dementia Caregivers.

• Peng-Chih Wang Ph.D.
• Stanford University
• School of Medicine
• Older Adult and Family Center.

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Overview

• Background and Introduction
• Dementia and caregiving.
• Chinese cultural based views of dementia
• Families Service needs and barriers to help
  seeking.
• Intervention Programs for Chinese American
  Caregivers.
• Conclusion and future research directions

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Dementia Caregiving

• What is Caregiving ?
• Definitions of caregiving vary however, when we
  speak of informal caregivers we are talking
  about those families, friends, and significant
  others who provide the bulk of ongoing care and
  assistance, without pay, to others in need of
  support due to chronic physical or mental health
  conditions, frailty, life threatening illness, or
  from acute care treatments.
• It is important to remember, that those providing
  care may not recognize what they are doing is
  caregiving. They may see it as part of being a
  family or as being a spouse (or a friend) and
  often do not recognize the increasing burden that
  can occur as illness progresses.

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Dementia Caregiving Facts

• People over 85 years of age are fastest growing
  segment of population
• More than 54 million people provided care for a
  chronically ill, disabled or aged family member
  or friend in past year
• 59 of adult population is or expects to be a
  family caregiver
• 4.5 million currently diagnosed with Alzheimers
  disease or related disorder (ADRD) in USA
• Most persons with ADRD cared for at home
• Caregiving occurs over extended time
• Average course of disease is 10 years
• Range from 4 to 20 years as more individuals are
  diagnosed earlier in the disease

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Dementia Caregivers Who Are They?

• Most dementia family caregivers are
• Between 40 and 60 years of age
• Spouses (wives) or adult children of the patient
  
  (daughters, daughters-in-law)
• With children ltage 18 at home 37
• Average annual income 35,000
• Working full or part time 59
• 35 of caregivers reduced work hours or reported
  being less effective at work
• 49 of caregivers have made financial sacrifices
  to provide better care
• Average duration of caregiving 4.5 years
• Range from 4-20 yrs as more are diagnosed earlier
  in the disease
• Physical /Mental Health Problems 15
• Emotionally Stressed 25
• Leisure and social activities 50
• 51 less time friends and family
• 44 give up vacations, hobbies, social activities
• 26 less exercise

Dementia Family Caregivers Come From All Ethnic
Groups
National Alliance for Caregiving and AARP, 2004
Alzheimers Association
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Dementia Caregivers What They Do?
Activities of Daily Living (ADLs)
Instrumental Activities of Daily Living (IADLs)

• Bathing Toileting
• Grooming Dressing
• Walking
• Feeding

• Shopping Cooking
• Housework Errands
• Transportation Finances
• Managing dispensing medications

OTHER AREAS OF ASSISTANCE

• Home modifications and assistive devices
• Arranging, attending, advocating medical care,
  and other services
• Community integration, socialization, and
  emotional well-being
• Managing difficult and burdensome behaviors (such
  as, repetitive questioning, waking family
  members, arguing/complaining)

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Caregiver - The Hidden Patient

• AT RISK FOR
• Depression (gt50 caregivers are depressed)
• Extreme fatigue, stress, anger/frustration
• Anxiety, upset, feeling overwhelmed
• Financial loss
• Social isolation
• Physical health problems/Morbidity
• Mortality
• Coon, Gallagher-Thompson Thompson, 2003
  (Eds.), Innovative Interventions to Reduce
  Caregiver Distress, Springer Ory et al., 1999,
  The Gerontologist, 37, 804-815 Schulz, et al,
  1995. The Gerontologist, 35, 771-791 Schulz
  Beach, 1999, JAMA, 282, 2215-2219

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Women as Primary Caregivers(Arno et al., 1999
Commonwealth Fund, 1999))

• Women constitute the majority of the more than 25
  million caregivers in the US (most are 45-64).
  However this is changing men are increasing.
• Women caregivers have more health problems
• 54 have 1 chronic conditions (vs. 41 of non
  caregivers)
• 51 report high levels of depressive symptoms
  (vs. 38 of non-caregivers).

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Impacts of Dementia Caregiving(Ory et al., 1999
NAC/AARP, 1997)

• ADLs/IADLs
• Employment Changes
• Financial hardship
• Give up leisure
• Reduced time for family

• Family conflict
• Emotional strain
• Physical strain
• Physical health problems
• Greater amounts of service utilization
• NOT ALL NEGATIVE!

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What Causes Caregiving to be Stressful?

• Lack of control predictability
• ADRD can cause unusual unpredictable behaviors
  in patient (e.g. severe mood swings)
• Loss of outlets for frustration or sources of
  support
• Social isolation
• A perception that things are getting worse
• As disease progresses, other symptoms may arise
• Feelings of not having what it takes to meet the
  next obstacle
• Helplessness

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Background and Introduction

• Why study the Chinese American population?

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Cultural based views of dementia

• Normalization avoid stigmatization
• Mental illness crazy catatonic
• Retribution for sins of ancestors or familys
• bad karma/feng shui
• Fate (external locus of control)
• Regression to Childhood
• Trad. Chinese medicine
• Problems with -Kidney
• -Mind/Heart
• -Turbid phlegm
• -Blood stagnation

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Service needs and barriers to help seeking

• Chinese communities often view cognitive decline
  and behavioral problems as a normal part of
  aging.
• Research is regarded as potentially harmful as it
  might stress out their loved one.
• Labeling the older relative as suffering from
  Alzheimers disease or dementia carries a
  negative connotation for the older relative and
  stigmatizes the whole family.
• 
  Hinton(2001).

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Service needs and barriers to help seeking

• This is the obstacle because I cant communicate
  with the doctor. He didnt talk much when the
  doctor asked him questions because he did not
  know how to explain.
• They healthcare providers at a local clinic
  will be nice to Americansnon-Chinese. They
  dont like thoseespecially from mainland
  China. I also think that income is another
  reason. Mostly, they treat different people
  differently.
• 
  Hintin(2001)

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Service needs and barriers to help seeking

• I will not bother my family if I can take care of
  the problem myself.
• My children have their own work to worry about.
  Only when I have some serious disease will I
  think about bothering them.
• Our children will definitely be involved when
  something serious happens to us.
• 
  Pang et al(2003)

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Sources of caregiving stress burden of Chinese
dementia caregivers

• Caregiving demands
• Frequency of disruptive behavior of
  care-recipient (Fuh et al., 1997)
• Using alcohol, eating, smoking, etc. to cope as
  opposed to managing problematic situations and
  reducing expectations (Fuh et al., 1997)
• Caregiver over involvement (Chou et al., 1999)
• Provide more time-consuming forms of personal
  financial care but most apt to feel guilty over
  not doing enough, compared to other ethnic groups
  (AARP Multicultural Survey, 2001)
• Traditional cultural expectations
• Conflict between traditional cultural
  expectations and what caregivers could or are
  willing to provide (Jones, 1995)
• Inability to share caregiving responsibilities
  (Jones, 1995)
• Parents continued authority over childrens
  lives vs. role reversal--parents depending on
  children to survive after immigration
• Interpersonal relationships
• Preexisting relationship conflicts between CR
  CG (Heok Li, 1997)
• Intergenerational differences in expectations of
  care help-seeking behaviors (foreign-born
  parents vs. American born children) (Elliott et
  al., 1996)
• Changing family dynamics leading to loss of
  authority/status
• Lack of resources
• Lack of resources and kinship network
• Non-caregiving stressors (Ho et al., 2000)

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Home-based psychoeducational interventions for
Chinese dementia caregivers

• Why a psychoeducational approach for Chinese
  caregivers?
• - Asian cultures value education (E. Lee,
  1997)
• - Need to provide more education to Chinese
  communities regarding
• normal and abnormal cognitive decline because
  oftentimes cognitive
• deterioration and behavioral difficulties are
  regarded as a normal part of
• aging or childhood regression
• - More education is needed to reduce negative
  associated with
• Alzheimers disease or dementia
• - Reframing psychological treatment as
  psychoeducational training
• increases willingness to participate
• Why provide home-based individual interventions?
• - Home-based interventions are a common method
  of delivering
• health-related services to the older population
• - Interventionists going to participants homes
  removes practical barriers
• to accessing services
• (1) bilingual-bicultural staff eliminates
  language barrier
• (2) Chinese elders often do not drive
• (3) meeting at home allows for more flexible
  meeting times

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Project Design

• Pre-Treatment Assessment
• Interview (2 sessions)
• Collect psychological and biological data
• Participants are then randomized to 2 conditions
• Home-Based Intervention
• 12 weekly sessions
• Each session lasts for 1.5 to 2 hours
• Telephone Minimal Support
• 6 bi-weekly sessions
• Each telephone session lasts for 15 to 30 minutes
  
• Post-Treatment Assessment
• Interview (1 session)
• 4 to 6 months after Pre-Treatment Assessment
• Collect psychological and biological data

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PSYCHOEDUCATION PROGRAM

• A total of 12 weekly sessions
• Each session lasting 1.5 to 2 Hours
• Delivery of the intervention is done through the
  use of the Coping with Caregiving Manual,
  derived from Cognitive/Behavioral theories,
  tailored for Chinese cultural acceptability and
  translated (and back-translated) into Chinese
• Intervention consists of 6 modules

• Communication skills
• Pleasant events
• End-of-Life care

• Trigger-Behavior-Reaction concepts
• Relaxation techniques
• Cognitive restructuring

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TELEPHONE SUPPORT PROGRAM

• 6 phone calls made to the Caregiver at 2-week
  intervals over a 12-week period
• Each call lasted between 15 to 30 minutes
• Each call began by the interventionist inquiring
  about how things were going for the Caregiver and
  the Care Recipient
• Usually, one or more problems were identified by
  the interventionist during these preliminary
  inquiries
• Common themes were wandering, incontinence,
  incessant repetitive questioning, temper
  outbursts, frequent awakenings during the night,
  legal issues, etc.
• Relevant material concerning issues the Caregiver
  experienced was mailed

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Example of In-Home Behavioral InterventionChangi
ng Triggers Reactions

• This case illustrates how changing Caregivers
  behavior can change CRs reaction.
• Trigger-Behavior-Reaction (T-B-R)
• Trigger CR accuses family members of stealing
  and hiding his belongings CR screams and
  becomes verbally
• aggressive
• Behavior CG screams back and repeatedly argues
  with CR, Why would anyone steal your things?
  (rationalize with CR)
• Reaction CR continues to yell and becomes even
  more agitated
• CG becomes more distressed and more helpless
• Altered T-B-R
• Trigger CR accuses family members of stealing
  and hiding his belongings CR screams and
  becomes verbally
• aggressive
• Behavior (1) CG says uh-huh calmly (listens
  empathically to
• CRs accusations), but does not agree or
  disagree (recognizes delusions as part
  of illness)
• (2) CG distracts CR with activities to occupy
  CR
• Reaction CR becomes bored or distracted but
  stops arguing and screaming CG becomes less
  distressed

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Study Design
Recruitment
Screening
Baseline Assessment
Randomization
Treatment
Control
Follow-upAssessment
Follow-upAssessment
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Primary Hypotheses

• CGs in the IHBMP will report a greater decrease
  than CGs in a telephone-base comparison treatment
  condition for level of
• Self-reported depressed symptoms
• Specific stress resulting from care
  recipients(CR) problematic behaviors.
• The IHBMP will decrease this more than the TSC,
  by virtue of its greater impact on CGs ability
  to cope with CR problematic behaviors.

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Secondary Hypotheses

• CGs with high level of baseline self-efficacy
  would benefit more from both treatment than CGs
  with low levels.
• CGs with high baseline acculturation would
  benefit more than those with low acculturation.

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Third Hypothese

• CGs in IHBMP will have greater satisfaction
  towards their caregiving and greater improvement
  in their quality of life than CGs in Telephone
  condition.

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PARTICIPANTS

• 44 female Chinese family Caregivers (Table 1)
• Age (M 59.93 SD 11.81)
• Years in the U.S. (M 31.55 SD 20.40)
• Years of Education (M 13.41 SD 4.21)
• Relationship to Care Recipient (13 Spouses 31
  Non-Spouses)
• Care Recipient Characteristics (Table 2)
• Age (M 80.71 SD 7.91)
• Years in the U.S. (M 35.23 SD 25.64)
• Years of Education (M 10.14 SD 5.51)
• ADL/IADL (M 7.28 SD 1.43)
• MMSE (M 11.20 SD 7.93)
• Participants were randomized to one of two
  treatment conditions
• In-home Behavioral Management (IHBM) (n 22)
• Education/telephone support (TSC) (n 22)

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Sociodemographic Characteristics of Caregivers
by Treatment Condition
TABLE 1
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Sociodemographic Characteristics of Care
Recipients by Treatment Condition
TABLE 2
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Pre-treatment psychiatric morbidity
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Results Primary outcome analysesTable 3. Means
and standard Deviations for Baseline and Post
Treatment Outcome measures group according to
Treatment Condition
Note CES-D Center for Epidemiological Studies
- Depression Scale RMBPC CB Revised Memory
and Behavior Problem Checklist Conditional
Bother (Subscale) PSS Perceived Stress
Scale.
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Table 4 Chinese Caregiver Assistance
Project Linear Regression Analysis Summary of
Primary Outcome Variables B SE B P-value Effe
ct Size (Cohens d) CES-D -5.233 2.1
3 -.239 .017 0.80 Conditional
-.0522 0.218 -.294 .022 0.65 Bother Perceiv
ed Stress -.231 1.051 -.026 .827 0.30 Note.
B Unstandardized Coefficient B Beta is the
estimated difference between the treatment and
control group for outcome measures (negative
better for treatment group) SE Standard Error
of Measurement B Standardized Beta CES-D
Center for Epidemiological Studies - Depression
Scale RBMPC CB Revised Memory and Behavior
Problem Checklist (Conditional Bother Scale)
PSS Perceived Stress Scale. aBased on treatment
group difference for Baseline-Post Difference
scores. p lt .05.
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Secondary Outcome Analyses

• Self-efficacy measures were not associated with
  post treatment outcome scores. Self-efficacy for
  obtaining respite did interact with treatment to
  predict posttreatment level of depression
• (ß0.714t(43)2.21,p0.033).
• Acculturation was not associated with change from
  pre to post or other indices of improvement, nor
  were there significant interactions between
  acculturation and treatment to predict post
  treatment outcome.

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Third ANALYSES

• A Principle components factor analysis was
  conducted on on the Program Evaluation measure
  yielding two factors
• (1) Overall Satisfaction with the Program
• (2) Overall Skills Learned
• Total scores were computed for the two factors
• A series of one-way analysis of variance (ANOVA)
  were conducted to assess differences in Overall
  Satisfaction with the Program and Overall
  Skills Learned for those caregivers randomized
  to IHBMP compared to those in TSP.

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One-Way Analysis Of Variance (ANOVA) for
Perceived Satisfaction of Program Between
Treatment Conditions
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DISCUSSION

• Preliminary results indicate that participants
  perceived the IHBMP as extremely useful in
  helping them deal with stress of caregiving.
• These findings are encouraging and suggest that
  continued enhancement of this program should be
  fruitful.
• These finding are among the first to lend
  empirical support to the acceptability of CBT for
  Chinese Americans.

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DISCUSSION continued

• It should be noted that actual pre/post change in
  depressive symptoms and caregiving specific
  stress was more significant for those in the
  IHBMP compared to those in the TSP.
• These results indicating that the intervention
  most associated with improvement (reduction of
  caregiver related distress and decrease in
  depressive symptoms) was also the one most valued
  by clients.
• Both their satisfaction levels and report of
  skills learned were consistent with prediction
  based on prior CBT research with non-Asian
  clients.

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Limitations

• Small sample size.
• Only woman were included in this study.
• High cost for one on one in home intervention.

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DVD project

• This work is grounded in cognitive/behavioral
  theories and techniques, and builds upon positive
  result s obtained in above study and the other in
  which a 10 video series, notebook, and phone
  coaching(done in English) were used with both
  African American and Caucasian caregivers in the
  St. Louis, MO region. In this study, The DVD
  series is professionally produced in Mandarin
  with English subtitle, and workbook is written
  by English and Chinese.

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DVD Conditions

• Skill-Training Program
• Information teaching you how to handle some
  problems experienced as a caregiver
• How to manage, modify, and/or change specific
  troublesome behaviors
• Utilization of Cognitive-Behavioral Therapy
  Techniques
• Role Plays
• Workbook accompanied with DVD
• Educational Program
• Information about dementia
• How to recognize dementia
• What to do to help care recipient

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Outreach vs. Special Outreach

• Typical outreach
• Contacting Senior Centers, Assisted Living
  Facilities, Alzheimers Association
• Making presentations
• Flyers
• Special outreach
• Media Chinese Newspapers, Radio, Newsletters
• Presentations at libraries and other agencies
• Personal visits by staff to hospitals and agencies

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Sample Information
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Screened Participants by Agency Types
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Questionnaire Return Rates by Agency Referral Type
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Percentage of Enrolled Participants by Agency
Referral Type
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Conclusion

• Agencies where staff established good rapport
  provided best enrollment and return rates
• Media showed to be a good outreach resource
• Currently, staff are conducting following-up
  phone calls with participants.
• Progress of watching
• Workbook utilization
• Comparison of efficacy of STP and EP
• Participant satisfaction of STP and EP

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Discussion

• Preliminary reports indicate that participants
  who received the STP DVD found it extremely
  useful in helping them deal with problematic
  behaviors
• Reports are encouraging and suggest that
  continued enhancement of this program should be
  fruitful

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Plans for future Research and Teaching

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• Short term goal
• Long term goal
• Teaching