The Many Faces of Family Caregivers David W. Coon, PhD Associate Vice Provost for Research Collaborations Senior Associate Dean for Faculty & Research

The Many Faces of Family Caregivers

David W. Coon, PhDAssociate Vice Provost for Research Collaborations

Senior Associate Dean for Faculty & Research Virginia G. Piper Charitable Trust Faculty

Supported by the National Institute on Aging, the National Institute of

Nursing Research, the U.S. Administration on Aging, and

the State of Arizona

People….People….People….People….

There are four kinds of people in There are four kinds of people in the world. Those whothe world. Those who have been caregivers,have been caregivers, are currently caregivers,are currently caregivers, will be caregivers,will be caregivers, will need caregivers. will need caregivers.

Rosalynn Rosalynn CarterCarter

Why is Caregiving Why is Caregiving Important?Important?

Why is Caregiving Why is Caregiving Important?Important? An estimated 44 million Americans An estimated 44 million Americans

provide unpaid care to another provide unpaid care to another adultadult More than 1 in 5 adults in the U.S.More than 1 in 5 adults in the U.S.

Family care is the most important Family care is the most important source of assistance for people source of assistance for people with chronic conditions who need with chronic conditions who need long-term care (LTC)long-term care (LTC)

Without this “informal” workforce, Without this “informal” workforce, the entire health care and LTC the entire health care and LTC system would be in jeopardysystem would be in jeopardy

Clearly, this expands when Clearly, this expands when considering kinship care and care considering kinship care and care for children and teens.for children and teens.

Value of Family Caregiving Value of Family Caregiving is Staggeringis Staggering

Value of Family Caregiving Value of Family Caregiving is Staggeringis Staggering

Economic value of informal care is Economic value of informal care is measured as the cost of replacing informal measured as the cost of replacing informal (unpaid) care with formal (paid) care. (unpaid) care with formal (paid) care. Estimated value of this family care is over Estimated value of this family care is over $375 billion $375 billion (AARP).(AARP).

In 2009, nearly 11 million Americans In 2009, nearly 11 million Americans provided 12.5 billion hours of unpaid care provided 12.5 billion hours of unpaid care to family & friends with ADRD.to family & friends with ADRD.

Estimated value of this unpaid care: Estimated value of this unpaid care: Almost $144 billionAlmost $144 billion More than what Medicare and Medicaid spent More than what Medicare and Medicaid spent

combined on those with Alzheimer’s disease.combined on those with Alzheimer’s disease.

– Generation Alzheimer’s (Alzheimer’s Association 2011)

Family caregivers must…Family caregivers must… Care for patients discharged “sicker and quicker”Care for patients discharged “sicker and quicker” Navigate health care systems that lack care Navigate health care systems that lack care

coordinationcoordination Deal with “information overload” and choicesDeal with “information overload” and choices Manage difficult medication schedules and Manage difficult medication schedules and

sophisticated technology in the homesophisticated technology in the home Juggle competing demands of work and careJuggle competing demands of work and care Often provide/coordinate caregiving long distanceOften provide/coordinate caregiving long distance Locate, access, and monitor quality paid helpLocate, access, and monitor quality paid help

Caregiving is Beyond Caregiving is Beyond the Critical Tipping Pointthe Critical Tipping Point

Caregiving is Beyond Caregiving is Beyond the Critical Tipping Pointthe Critical Tipping Point

All I ever needed to know…All I ever needed to know…I learned in kindergarten.I learned in kindergarten.

Robert Fulghum

All I ever needed to know…All I ever needed to know…I learned in kindergarten.I learned in kindergarten.

Robert Fulghum

I don’t think Robert Fulghum was a I don’t think Robert Fulghum was a family caregiver.family caregiver.

D.W. Coon

Family Caregivers: Who Are They?

Caregiver - The Hidden PatientCaregiver - The Hidden PatientCaregiver - The Hidden PatientCaregiver - The Hidden Patient

AT RISK FORAT RISK FOR:: Depression (>50% caregivers are Depression (>50% caregivers are

depressed)depressed) Extreme fatigue, stress, anger/frustrationExtreme fatigue, stress, anger/frustration Anxiety, upset, feeling overwhelmedAnxiety, upset, feeling overwhelmed Financial lossFinancial loss Social isolationSocial isolation Physical health problems/MorbidityPhysical health problems/Morbidity MortalityMortality

Coon, Gallagher-Thompson & Thompson, 2003 (Eds.), Coon, Gallagher-Thompson & Thompson, 2003 (Eds.), Innovative Interventions to Reduce Innovative Interventions to Reduce Caregiver Distress, Caregiver Distress, Springer; Ory et al., 1999, Springer; Ory et al., 1999, The Gerontologist, 37The Gerontologist, 37, 804-815; Schulz, et al, , 804-815; Schulz, et al, 1995. 1995. The Gerontologist, 35The Gerontologist, 35, 771-791; Schulz & Beach, 1999, , 771-791; Schulz & Beach, 1999, JAMA, 282JAMA, 282, 2215-2219, 2215-2219

Why Investigate Diversity in Caregiving?

Assessments/Instruments

Interventions Services

RecruitmentRetention

DisseminationAdoption

Addressing Diversity

Sociocultural Influences Sociocultural Influences on Caregivingon CaregivingSociocultural Influences Sociocultural Influences on Caregivingon Caregiving

The meaning of illnessThe meaning of illness Who is “family”Who is “family” Values and attitudesValues and attitudes Decision-making concerning eldersDecision-making concerning elders Style of communicationStyle of communication View of outside help and authorityView of outside help and authority Definitions of acceptable behaviorDefinitions of acceptable behavior Coping strategiesCoping strategies

““Normal” behavior is universal and applies Normal” behavior is universal and applies to all cultures in the same manner. to all cultures in the same manner.

Historical background is irrelevant to Historical background is irrelevant to immediate issues.immediate issues.

Independence is desirable; dependence is Independence is desirable; dependence is not.not.

We need to help the individual “adapt” to We need to help the individual “adapt” to institutions.institutions.

Services are to support the individual’s Services are to support the individual’s (not his/her group’s) growth and (not his/her group’s) growth and development.development.

We already know our biases and culturally-We already know our biases and culturally-learned assumptions.learned assumptions.

*Adapted from Paul P. Pederson*Adapted from Paul P. Pederson

Culturally-Biased Culturally-Biased Assumptions of ProfessionalsAssumptions of Professionals

Culturally-Biased Culturally-Biased Assumptions of ProfessionalsAssumptions of Professionals

Examples Drawn from Dementia Family

Caregiving

Cautionary Statement

A matter of degree Exceptions to the rule Recent review, very similar findings among work

conducted with other types of family caregivers Disentangling culture, race/ethnicity from other

variables (income, education, acculturation, values)

Selection bias (gender, treatment, geography, language, relationship)

Need more investigation with all, especially…• Underrepresented groups, rural, grandparents caring

for grandkids, caregiving beyond dementia.• Particularly true in terms of effective interventions

and diversity.

Variations in the Impacts of Caregiving

Caucasians (non-Hispanic Whites): chronic fatigue, depression, anxiety, burden, self-reported

anger & frustration, plus substantive risk for mortality

African Americans: less self reported depression and “burden” but less

engagement in self-care behavior & poorer self-rated health

Latinos: high levels depression and anxiety & greater physical

complaints BUT less distress over behavioral problems of the care-recipient & less reported “burden”

Chinese: less self-reported depression and “burden” but significant

problems managing difficult behaviors along with significant family conflicts about caregiving

Is This All There Is?Is This All There Is?Positive Aspects & Caregiver GainPositive Aspects & Caregiver Gain

Is This All There Is?Is This All There Is?Positive Aspects & Caregiver GainPositive Aspects & Caregiver Gain

Opportunity to give backOpportunity to give back Serve as a role modelServe as a role model Draws family members closerDraws family members closer Prevention of loved one’s Prevention of loved one’s

deteriorationdeterioration Increase self-esteemIncrease self-esteem Enhanced sense of purpose or Enhanced sense of purpose or

meaningmeaning Feeling appreciatedFeeling appreciated

((Farran et al., 1991: Kramer, 1007; Miller & Lawton, 1007; Farran et al., 1991: Kramer, 1007; Miller & Lawton, 1007; NAC/AARP, 2004)NAC/AARP, 2004)

Variations in Variations in Positive Aspects of Caregiving?Positive Aspects of Caregiving?

Variations in Variations in Positive Aspects of Caregiving?Positive Aspects of Caregiving?

African Americans report higher PAC levels African Americans report higher PAC levels than non-Hispanic Whites than non-Hispanic Whites (Haley et al., 2004; (Haley et al., 2004; Hilgeman et al., 2009).Hilgeman et al., 2009).

Latinas reported higher PAC levels than Latinas reported higher PAC levels than Anglo women. Less acculturated Latinas Anglo women. Less acculturated Latinas reporter higher PAC levels than their more reporter higher PAC levels than their more acculturated counterparts acculturated counterparts (Coon et al., 2004). (Coon et al., 2004).

PAC played a role in care recipient PAC played a role in care recipient placement such lower PAC levels accounted placement such lower PAC levels accounted for greater rate of placement by more for greater rate of placement by more acculturated Latinas compared with less acculturated Latinas compared with less acculturated Latinas and Anglo women acculturated Latinas and Anglo women (Mausbach, Coon, et al., 2004). (Mausbach, Coon, et al., 2004).

Intervention Strategies with Intervention Strategies with African Americans CaregiversAfrican Americans CaregiversIntervention Strategies with Intervention Strategies with African Americans CaregiversAfrican Americans Caregivers

Teach concrete problem-solving skills Teach concrete problem-solving skills with a practice base.with a practice base.

Emphasis on physical healthEmphasis on physical health

Relief for economic burdens of caregivingRelief for economic burdens of caregiving

Teach advocacy skills and mobilize Teach advocacy skills and mobilize resources including African American resources including African American national organizational partnerships. national organizational partnerships. Storytelling/multimodal approaches.Storytelling/multimodal approaches.

Integration of religiosity/spiritualityIntegration of religiosity/spirituality

Suggestions for Working Suggestions for Working Effectively With Latino Caregivers Effectively With Latino Caregivers

Suggestions for Working Suggestions for Working Effectively With Latino Caregivers Effectively With Latino Caregivers

PlaticarPlaticar- take time to get to know the - take time to get to know the person & share personal information person & share personal information about yourself (about yourself (personalismopersonalismo).).

Attend to family first. Validate Attend to family first. Validate complementary yet conflicting feelings complementary yet conflicting feelings

Use bilingual/bicultural staff whenever Use bilingual/bicultural staff whenever possible. Recognize acculturation possible. Recognize acculturation status. “Papers”.status. “Papers”.

Family involvement. Avoid the auto-Family involvement. Avoid the auto-assumption of multiple caregivers. assumption of multiple caregivers.

(Gallagher-Thompson, Arean et al., 2003; Coon et al., 2004; (Gallagher-Thompson, Arean et al., 2003; Coon et al., 2004; Talamantes et al., 2006)Talamantes et al., 2006)

Strategies for Chinese caregiversStrategies for Chinese caregiversStrategies for Chinese caregiversStrategies for Chinese caregivers

Draw on cultural strengths-- value of Draw on cultural strengths-- value of education and professionalseducation and professionals

Psychoeducational approach is appealing Psychoeducational approach is appealing for many family members. May need for many family members. May need individual approachindividual approach

Help acknowledge psychological distressHelp acknowledge psychological distress Less likely to acknowledge initiallyLess likely to acknowledge initially Assess undetected depressionAssess undetected depression

Assess non-caregiving stressorsAssess non-caregiving stressors

Remove practical barriers Remove practical barriers (Gallagher-Thompson et al., 2008; 2010; Wang et al., 2006)(Gallagher-Thompson et al., 2008; 2010; Wang et al., 2006)

Working with American Indian, Working with American Indian, Alaskan Native, First Nations Alaskan Native, First Nations

FamiliesFamilies

Working with American Indian, Working with American Indian, Alaskan Native, First Nations Alaskan Native, First Nations

FamiliesFamilies Little “data”. Diversity across groups. Heterogeneity Little “data”. Diversity across groups. Heterogeneity

within groups. Histories distinct and shared.within groups. Histories distinct and shared.

Community-based and peer led education using American Community-based and peer led education using American Indian educators or peer counselors to inform.Indian educators or peer counselors to inform.

Unwanted intervention vs. denial.Unwanted intervention vs. denial.

Spiritual practice and religious faith leaders as partners. Spiritual practice and religious faith leaders as partners. Integration of traditional healers with Western model in Integration of traditional healers with Western model in accordance with family’s wishes.accordance with family’s wishes.

Begin with indirect communication approaches focused on Begin with indirect communication approaches focused on specific behaviors. Small groups with education and family specific behaviors. Small groups with education and family inclusion in care planning (Hendrix & Swift Cloud-LeBeau, inclusion in care planning (Hendrix & Swift Cloud-LeBeau, 2006).2006).

Gender Differences in

Caregiving

Differences in: personal care and levels of care choice in becoming a caregiver levels of stress, emotional strain, and

subjective burden coping styles and support networks use of formal and informal support

Spouse vs. adult child caregivers

Differences in:

• types of care

• level of burden

• health problems

• identification as caregivers

• social isolation

• multiple roles and related role strain

• “others” as respite users?

Rapid Growth of the Very OldRapid Growth of the Very OldRapid Growth of the Very OldRapid Growth of the Very Old

72,000131,000

214,000

324,000

447,000

834,000

0100,000200,000300,000400,000500,000600,000700,000800,000900,000

2005 2010 2020 2030 2040 2050

Centenarians

US. Bureau of the Census (2008)

Who is the Caregiver? The Oldest Old as Caregivers

Age range 85-107. Investigated differences between those who did (n=50) and did not provide care (n= 135) within the past 5 years (n = 50).

Large proportions were either community dwelling (48.9%) or lived in independent-living facilities (39.8%).

Caregivers reported higher levels of cognition, physical activity/exercise (e.g., weekly participation in strength and flexibility training and/or cardiovascular activities), self-confidence, sense of being useful and greater problem solving ability.

Oldest old caregivers also demonstrated lower levels of upset by social demands and less functional impairments, but also reported spending more days alone and less social support from others.

• Keaveny, Walker, Felix, & Coon, 2010

LGBT Caregivers

Limitations in research and clinical literature• Most focused on AIDS-related caregiving• Over-represent middle- and upper-income white gay men

from urban areas

Partners and friends are primary support Legal and financial issues Concerns about lack of respect for relationship

• Family of origin• Employers• Providers

Heterosexism & Concerns about substandard care

Sociocultural Influences on the Experience of Depression

AssessmentAssessmentAssessmentAssessment

An Opportunity:An Opportunity:Screening & Assessment ToolsScreening & Assessment Tools

An Opportunity:An Opportunity:Screening & Assessment ToolsScreening & Assessment Tools

Focus on physically impaired care Focus on physically impaired care recipientrecipient

Services (e.g., respite) provided based Services (e.g., respite) provided based primarily, if not solely, on care recipient primarily, if not solely, on care recipient

Screens often remain limited, Screens often remain limited, particularly in terms of behavioral particularly in terms of behavioral health needshealth needs Behavioral health/emotional well-beingBehavioral health/emotional well-being CopingCoping Informal supportInformal support

Even still, often cumbersomeEven still, often cumbersome Ignore the care triad (CR, CG & SP)Ignore the care triad (CR, CG & SP)

Arizona CATArizona CATArizona CATArizona CAT

Arizona Caregiver Assessment Tool (CAT)Arizona Caregiver Assessment Tool (CAT)

To assist in respite allocation and identification To assist in respite allocation and identification of relevant services for the caregiver (Pilot in of relevant services for the caregiver (Pilot in Lifespan Respite Grant)Lifespan Respite Grant)

Drawn from the scientific and clinical literatureDrawn from the scientific and clinical literature

Refined through focused discussions with Refined through focused discussions with service providers, administrators, family service providers, administrators, family caregiverscaregivers

Tied to assessment of care recipientTied to assessment of care recipient

Scales/items with history of use with diverse Scales/items with history of use with diverse groups of caregiversgroups of caregivers

CAT: Development CAT: Development ProcessProcess


DomainsDomains• Caregiver risksCaregiver risks

– Caregiving activities/responsibilities Caregiving activities/responsibilities and impactand impact

– Physical healthPhysical health– Stress/strain/mood/burdenStress/strain/mood/burden

• Potential resourcesPotential resources– Informal social support Informal social support – Pleasant activities/leisure time Pleasant activities/leisure time

satisfactionsatisfaction• Project evaluationProject evaluation (administered only as (administered only as

part of the post evaluation)part of the post evaluation)

Involvement:Involvement:Recruitment and RetentionRecruitment and Retention

Involvement:Involvement:Recruitment and RetentionRecruitment and Retention

Multicultural SampleMulticultural SampleMulticultural SampleMulticultural Sample

614 participants in sample614 participants in sample

3 ethnic/racial groups3 ethnic/racial groups

Ethnic GroupEthnic Group nn

Latino/HispanicLatino/Hispanic 288288

Non-Hispanic Non-Hispanic WhiteWhite

ChineseChinese

189189

137137

Enrollment SuccessEnrollment SuccessEnrollment SuccessEnrollment Success

Outreach Method

Non-ProfessionalProfessionalMedia

Pe

rce

nt

Elig

ible

70

60

50

40

30

20

10

0

Caucasian

Chinese

Hispanic

Confianza Triangle Confianza Triangle of Successful Recruitmentof Successful Recruitment

Confianza Triangle Confianza Triangle of Successful Recruitmentof Successful Recruitment

LatinoIndividuals

ResearcherCommunityAgency

1 3

2

1. Community agency establishes trust with Latino individuals

2. Researcher establishes trust with the agency

3. Researcher indirectly establishes trust with the individual

BUT…….BUT…….BUT…….BUT…….

WHAT ABOUT MIAMI???WHAT ABOUT MIAMI???

Intervention Programs:Intervention Programs:Intervention Programs:Intervention Programs:

Intervention Intervention Programs and Services: Programs and Services:

Intervention Intervention Programs and Services: Programs and Services:

Availability: Availability: What is available and to What is available and to whom?whom?

Accessibility: Accessibility: How does one access it? How does one access it? What impedes access?What impedes access?

Acceptability: Acceptability: How does it meet needs? How does it meet needs? How does it fit with who I am/we are?How does it fit with who I am/we are?

Community Partners Wish List

Community Partners Wish List

Evidence based; empirically supported User Friendly- Staff Ready (AKA minimal

training time) Complementary to existing programs

Respite, care management, support groups

Appeal to & be effective with caregivers from diverse backgrounds

Less “intensive” and less structured “time away” But POWERFUL! (The “Pill”, the Silver

Bullet)

…and, preferably something I already do.

We Got an App for That!We Got an App for That!We Got an App for That!We Got an App for That!

ContinuedContinuedDepression/Depression/

ReengagementReengagement

DistressDistress

RecoveryRecovery

ReliefReliefPsychological Psychological AppraisalAppraisal

Health EffectsHealth Effects

InitiateInitiateIADL CGIADL CG

ExpandExpandADL CGADL CG

PlacementPlacementCG/CG/CR TrajectoryCR Trajectory

MinorMinor

BenignBenign

Psychiatric/Psychiatric/PhysicalPhysicalMorbidityMorbidity

DistressDistress

DeathDeath

Chronic Stress TrajectoryChronic Stress Trajectoryof Caregiving for Older of Caregiving for Older

AdultsAdults


AdultsAdults

DeathDeath

What’s Successful?What’s Successful?Implementing Caregiver Implementing Caregiver

InterventionsInterventions

What’s Successful?What’s Successful?Implementing Caregiver Implementing Caregiver

InterventionsInterventions Education alone.Education alone.

Care Management.Care Management.

Respite.Respite.

Support Groups.Support Groups.

Environmental.Environmental.

Technological.Technological.

Education & Skill Training (CR, CG, both).Education & Skill Training (CR, CG, both).

Psychotherapy/Counseling.Psychotherapy/Counseling.

Multi-component.Multi-component.

Coon, D. et al. (in press). Family Caregivers of Older Adults. In F. Scogin, Evidence-based Coon, D. et al. (in press). Family Caregivers of Older Adults. In F. Scogin, Evidence-based Psychological Treatments for Older Adults. Psychological Treatments for Older Adults. American Psychological AssociationAmerican Psychological Association. .

Gallagher-Thompson, D. & Coon, D.W. (2007). Evidence-Based Psychological Treatments Gallagher-Thompson, D. & Coon, D.W. (2007). Evidence-Based Psychological Treatments for Distress in Family Caregivers of Older Adults, for Distress in Family Caregivers of Older Adults, Psychology and Aging, 22Psychology and Aging, 22, 37-51., 37-51.

CarePRO: CarePRO: Care Partners Reaching Out Care Partners Reaching Out

CarePRO: CarePRO: Care Partners Reaching Out Care Partners Reaching Out

10 Weeks (Modification of CWC)10 Weeks (Modification of CWC) Alternating Weeks of Psychoeducational/ Skill-Alternating Weeks of Psychoeducational/ Skill-

building Groups & Coach Callsbuilding Groups & Coach Calls• TBR & Problem solvingTBR & Problem solving• Mood managementMood management• Stress managementStress management• Pleasant EventsPleasant Events• Effective communicationEffective communication• Home PracticeHome Practice

Respite offered through area agencies on agingRespite offered through area agencies on aging Over 600 Arizona and Nevada family caregivers in Over 600 Arizona and Nevada family caregivers in

the next 3 years. the next 3 years. Strategies used effectively with White, Hispanic, Strategies used effectively with White, Hispanic,

African American and Chinese/Chinese American.African American and Chinese/Chinese American.

Tailoring Psychosocial Tailoring Psychosocial Interventions to Latino Interventions to Latino

CaregiversCaregivers

Tailoring Psychosocial Tailoring Psychosocial Interventions to Latino Interventions to Latino

CaregiversCaregivers Revise Recruitment Strategies. Revise Recruitment Strategies.

PlaticarPlaticar and Socialization. and Socialization.

Validate complementary yet conflicting feelings.Validate complementary yet conflicting feelings.

Role and reality.Role and reality.

Family before me.Family before me.

Address roadblocks to “Taking Care of the Address roadblocks to “Taking Care of the

Caregiver.”Caregiver.”

Conceptual Translation.Conceptual Translation.

Community Advisory Board/Partners.Community Advisory Board/Partners.

Caregiver and service provider feedback.Caregiver and service provider feedback.

Case ExampleCase ExampleCase ExampleCase Example Valeria is a 57-year-old Latina who has been Valeria is a 57-year-old Latina who has been

caring for her 64-year-old husband Ernesto. caring for her 64-year-old husband Ernesto. The couple has an 18-year-old grandson living The couple has an 18-year-old grandson living with them who provides minimal assistance with them who provides minimal assistance with Ernesto’s care. She came to the group with Ernesto’s care. She came to the group stating that after 25 years of marriage, she was stating that after 25 years of marriage, she was having a difficult time understanding her having a difficult time understanding her husband’s behavior: he was diagnosed with husband’s behavior: he was diagnosed with Alzheimer’s disease a little over a year ago, and Alzheimer’s disease a little over a year ago, and in this short period of time, had his driver’s in this short period of time, had his driver’s license revoked and lost contact with many of license revoked and lost contact with many of his friends. his friends.

Strategies Caregiver Can Use toStrategies Caregiver Can Use to Prevent the Problem BehaviorPrevent the Problem Behavior

1.1. Set out fresh clothes for him and reward him when he Set out fresh clothes for him and reward him when he wears them; give him a compliment on how nice he looks wears them; give him a compliment on how nice he looks or make him his favorite breakfast.or make him his favorite breakfast.

2.2. Hide the outfit he really likes where he cannot find it.Hide the outfit he really likes where he cannot find it.

3.3. Buy him several pairs of the same pants and shirt so that Buy him several pairs of the same pants and shirt so that he thinks he is wearing his favorite outfithe thinks he is wearing his favorite outfit

4.4. When he goes to bed, take his clothes and put them in the When he goes to bed, take his clothes and put them in the laundry machine. Set the machine on the soak cycle so laundry machine. Set the machine on the soak cycle so that if he looks for them and notices they are wet, he will that if he looks for them and notices they are wet, he will need to find something else to wear. need to find something else to wear.

Thought Record

Situations Current Thoughts

Feelings Challenge & Replace

New Feelings

My neighbors and children will see my husband in the same clothes.

Everyone will think I don’t care about my husband.

Everyone will still think he is dirty and his clothes are dirty.

My children will think I have given up.

Stressed.Guilty.Sad.Embarrassed.

I told my neighbors. They asked for information about Alzheimer’s. I took my daughter with me; they all told me how much they believe I do for Ernesto.

My children say “You are smarter than ever”; “You do a great job”; “We hope our spouses love us as much as you love Papa”.

He is clean; he is happier; We are not arguing.

Less trapped and less guilty. Happier.More relaxed.Less embarrassed with those who know me.

Four Pleasant Events a Day Four Pleasant Events a Day Keep the Blues AwayKeep the Blues Away

Four Pleasant Events a Day Four Pleasant Events a Day Keep the Blues AwayKeep the Blues Away

They don’t have to be huge.They don’t have to be huge.

They must be Consciously Chosen, and They must be Consciously Chosen, and Deliberately Done to experience control.Deliberately Done to experience control.

Daily Engagement is Key.Daily Engagement is Key.

1.1. Events Control Mood.Events Control Mood.

2.2. To some extent you can control events.To some extent you can control events.

3.3. Therefore, you can control mood.Therefore, you can control mood.

Social Support & Effective Communication

We get by with a little help We get by with a little help from our friends….from our friends….

“After a hard day at the office,

it’s nice to be with your own kind, isn’t it?”

BUT….BUT….IS ALL SOCIAL SUPPORT IS ALL SOCIAL SUPPORT GOOD?GOOD?

BUT….BUT….IS ALL SOCIAL SUPPORT IS ALL SOCIAL SUPPORT GOOD?GOOD?

Mindful BreathMindful BreathMindful BreathMindful Breath

Choose a word that represents relaxation Choose a word that represents relaxation for you for you (peace, relax, calm)(peace, relax, calm)

Four deep breaths; mouth your word Four deep breaths; mouth your word during exhaleduring exhale

Rate tension Rate tension (before & after)(before & after)

Practice!Practice! Alternative: Alternative:

Tense muscles on inhale and release while Tense muscles on inhale and release while mouthing your word.mouthing your word.

RespiteRespite Effective use of “down time”Effective use of “down time”

Care Management & Memory Clinics Care Management & Memory Clinics The “Box” The “Box”

Support GroupsSupport Groups Self-efficacy as Moderator (Rabinowitz et Self-efficacy as Moderator (Rabinowitz et

al., 2006)al., 2006)

Interventions Interventions Needing Additional SupportNeeding Additional Support







Multiple Levels of InterventionsMultiple Levels of InterventionsMultiple Levels of InterventionsMultiple Levels of Interventions

IndividualI&R/Helpline, skill-building groups,

psychotherapy.

InterpersonalEarly stage groups for spouses.

Organizational/SystemMCO/CBO care pathway partnerships.

CommunityMedia campaigns or CCRC.

PolicyLifespan Respite, NFCSP, AMA Caregiver Tool

Taking time to Taking time to take care of yourself take care of yourself

is is the the BEST GIFT BEST GIFT you can give to you can give to

the person who needs your carethe person who needs your care

RESPITE RESPITE helps give you the time helps give you the time and space to do so.and space to do so.

Taking time to Taking time to take care of yourself take care of yourself

is is the the BEST GIFT BEST GIFT you can give to you can give to

the person who needs your carethe person who needs your care

RESPITE RESPITE helps give you the time helps give you the time and space to do so.and space to do so.

Concluding CommentsConcluding CommentsConcluding CommentsConcluding Comments

Pluralism…Pluralism…

The recognition of the contribution The recognition of the contribution of each group to the common of each group to the common

civilization.civilization.

We can learn from one another We can learn from one another

across our caregiving journeys.across our caregiving journeys.


The truly strong in our society are those who The truly strong in our society are those who reach out for support, whether the abscess is reach out for support, whether the abscess is on the knee or on the soul.on the knee or on the soul.

CourageCourage is the willingness to face the is the willingness to face the unexpected, for that is what defines it.unexpected, for that is what defines it.

Individuals facing chronic illness or impairment Individuals facing chronic illness or impairment and their caregivers are incredibly courageous.and their caregivers are incredibly courageous.

Skilled and caring professionals help Skilled and caring professionals help individuals and family caregivers maintain that individuals and family caregivers maintain that courage.courage.

Aging & Behavioral Health Aging & Behavioral Health ProjectsProjects

Aging & Behavioral Health Aging & Behavioral Health ProjectsProjects

Family Caregiver of Dementia Patients in Family Caregiver of Dementia Patients in LTCLTC

CarePRO: Care Partners Reaching OutCarePRO: Care Partners Reaching Out

EPIC: Early Stage Partners in CareEPIC: Early Stage Partners in Care

Prostate Cancer Couples ProjectProstate Cancer Couples Project

For information, please call:For information, please call:

(602) 496-1239(602) 496-1239

1-877-852-5420 (out of area)1-877-852-5420 (out of area)

(English/Spanish)(English/Spanish)

Contextual Considerations(CHESS Model)

Cultural: How do they define and how to these interact with other aspects of themselves (e.g., gender, race?) cross-cultural differences; individual versus collective/familial “rights”.

Historical: What is the impact of being in their cohort? Did they experience barriers to access? Discrimination (e.g., defined as mentally ill, “less than”, sinners, criminals).

Employment/Financial: Employment as resource, respite or ? employment discrimination, extra legal fees, visiting rights, decision-making, insurance.

Social Support: Who, what, when, where and why assist? “blended families”, role relaxation, independence/realistic expectations, limited or extended use of formal services.

Spiritual: Organizational or non-organizational? organizations as agents of support or intolerance & oppression; creating new models of meaning; finding a home.

(Coon, 2001; Coon & Burleson, 2006)

General Recommendations

LEARN Model

Listen Explain Acknowledge Recommend Negotiate

– Berlin & Fowkes, 1983

Strategies to Increase Cultural Competence

• Listen = Silent

• Columbo = (I was wondering…)

• El Corazón

• Use client descriptors

• Assumptions = #*?)!%

Tracking Pleasant Events: Learning To Put Pleasure into One’s Life

Days

Pleasant Events 1 2 3 4 5 6 7

1. Working on Computer

2. Reading Spiritual Books

3. Attending a Good Movie

4. Brisk Walk around the Park

5. Browsing in Downtown Library

6. Listening to Car-Talk

7. Listening to Music

8. Playing Tennis

9. Meeting with Friends

10. Riding the light rail

Total 5 4 4 4 3 6 5

Research Populations Is Caregiver research driven by gender?

Most caregiver research has been conducted with Caucasians, although some has been done with African Americans.

Considerably less research has been done with Latinos, Asian Americans

Minimal research related to Native Americans.

General Recommendations for Working with Family Caregivers

of Different Backgrounds

SURE – 2 Framework

Sharing & Support Unhelpful Thoughts/Behaviors &

Understanding Reframes & Referrals Education & Exploration

Working with Diverse Families

Be Knowledgeable About Your Patient and/or Family Caregiver Country of origin and significant background characteristics. Immigration history and impact on available kin network Language (or dialect) spoken by the patient and family

Be Knowledgeable about “Family” Structure and Decision-making Identify the family decision maker. Respect and work with families that combine Western and “Folk”

treatments Establish a personal relationship of trust and reciprocity

Develop Personal Rapport Personal rapport is a prerequisite for disclosure Watch out for impersonal mask of Western professionalism, Many cultures expect social chit-chat in which both sides exchange

information (backgrounds, interests and hobbies)

Working with Diverse Families (cont’d)

Be Aware of Your Communication Style

Respect.

Assure patients of confidentiality --- emphasize information is very important to provide the best, most helpful care

Be aware of cultural taboos – perhaps preface sensitive questions by emphasizing, as in the case of assuring confidentiality, that finding out about these things is necessary to provide the best, most accurate, and most helpful care

Simple, direct language. Make sure family members understand any recommendations made.

Inspire Hope: Improvements are possible in the family situation if they learn how to manage better their own unpleasant feelings as well as the relative’s changes.

Summary

Caregivers are the hidden patient.

Caregivers within and across groups are not homogenous.

Caregiving is not static. It involves major changes over time.

Caregiving has been called a “career.”

Hispanic/Latino Caregivers: Characteristics

Latinas (Latino females) report significant levels of depressive symptoms, dissatisfaction with family support, and physical health problems. Less research conducted on males.

More positive experiences from caregiving and less burden, but greater use of religious coping.

Less likely to seek services for themselves because of stigma and/or the lack of bilingual and bicultural staff.

“Burden” has negative connotations. Implies lack of role acceptance and that one is not grateful for the care received from others. (Adams et al., 2002; Coon et al., 2004).






The Power of Pleasant Activity in One’s Life Situation

Support GroupsSupport Groups Self-efficacy as Moderator (Rabinowitz et Self-efficacy as Moderator (Rabinowitz et

al., 2006)al., 2006)

Care Management & Memory Clinics Care Management & Memory Clinics The “Box” The “Box”

RespiteRespite Effective use of “down time”Effective use of “down time”



A Quality Family Caregiver A Quality Family Caregiver Assessment Is...Assessment Is...

A Quality Family Caregiver A Quality Family Caregiver Assessment Is...Assessment Is...

Multi-dimensional Multi-dimensional Context awareContext aware Culturally relevant and appropriate Culturally relevant and appropriate Easy and efficient to useEasy and efficient to use Administered in a systematic wayAdministered in a systematic way Sensitive to changeSensitive to change Understandable (transparent) – to Understandable (transparent) – to

caregiver and professionalcaregiver and professional Instructive – it guides practiceInstructive – it guides practice


Courage does not always Courage does not always roar. Sometimes courage is roar. Sometimes courage is the quiet voice at the end of the quiet voice at the end of the day saying, the day saying,

““I will try again tomorrow.”I will try again tomorrow.”Mary Anne RadmacherMary Anne Radmacher

Sustaining Behavior ChangeSustaining Behavior ChangeSustaining Behavior ChangeSustaining Behavior Change Home practice, Maintenance Guides & Home practice, Maintenance Guides &

BoostersBoosters Multiple Levels of Intervention & Multiple Levels of Intervention &

Multiple StrategiesMultiple Strategies Infusing helpful skills into care management, Infusing helpful skills into care management,

respite, support groups and related activities.respite, support groups and related activities. Ongoing examination of ways to tailor Ongoing examination of ways to tailor

interventions to address diversity in our interventions to address diversity in our society (gender, race/ethnicity, society (gender, race/ethnicity, rural/urban, etc.)rural/urban, etc.)

Multiple Disciplines Working in Multiple Disciplines Working in PartnershipPartnership

Bridging the Research & Community Gap Bridging the Research & Community Gap (Coon, Lipman, & Ory, 2003; Coon, Gallagher-Thompson & Thompson, (Coon, Lipman, & Ory, 2003; Coon, Gallagher-Thompson & Thompson,

2003; Coon et al., 2005)2003; Coon et al., 2005)

Analysis of Covariance (ANCOVA) Analysis of Covariance (ANCOVA) for for

Treatment and Ethnicity ConditionsTreatment and Ethnicity Conditions


Treatment and Ethnicity ConditionsTreatment and Ethnicity Conditions ANOVA F ANOVA F aa

T T bb E E cc T x E T x E dd d d ee

CES-D, TotalCES-D, Total 4.96 *4.96 * 0.050.05 0.090.09 .26.26

CES-D, Well BeingCES-D, Well Being 0.680.68 0.220.22 0.000.00

CES-D, Depressive AffectCES-D, Depressive Affect 5.14**5.14** 0.210.21 0.210.21 .26.26

CES-D, Somato-MotorCES-D, Somato-Motor 1.661.66 0.050.05 0.000.00

CES-D, InterpersonalCES-D, Interpersonal 6.52**6.52** 0.310.31 1.331.33 .30.30

Positive CopingPositive Coping 6.77 **6.77 ** 0.090.09 0.000.00 .35.35

Negative CopingNegative Coping 2.86*2.86* 0.480.48 2.512.51

Support SatisfactionSupport Satisfaction 0.060.06 0.050.05 0.010.01

Negative InteractionNegative Interaction 3.60**3.60** 2.692.69 0.050.05 .19.19

RMBPC ConditionalRMBPC Conditional 2.202.20 0.190.19 0.410.41

*p < .06; ***p < .06; **pp<.05.<.05.bb T = Treatment main effect, T = Treatment main effect, cc E = Ethnicity main effect, E = Ethnicity main effect, dd T x E = Treatment X Ethnicity T x E = Treatment X Ethnicity

interactioninteractionee The effect size values for Cohen’s d correspond to the significant F in each row. The effect size values for Cohen’s d correspond to the significant F in each row.

Sustaining Behavior ChangeSustaining Behavior ChangeSustaining Behavior ChangeSustaining Behavior Change Homework Homework Maintenance Guides & BoostersMaintenance Guides & Boosters Multiple Levels of Intervention & Multiple Levels of Intervention &

Multiple StrategiesMultiple Strategies Target both High-Risk & Large Segments Target both High-Risk & Large Segments

of the Populationof the Population Take the “Long View” of OutcomesTake the “Long View” of Outcomes Multiple Disciplines Working in Multiple Disciplines Working in

PartnershipPartnership Bridging the Research & Community Gap Bridging the Research & Community Gap

(Coon, Lipman, & Ory, 2003; Coon, Gallagher-Thompson & Thompson, (Coon, Lipman, & Ory, 2003; Coon, Gallagher-Thompson & Thompson, 2003; Coon et al., 2005)2003; Coon et al., 2005)

Behavior Change is Hard. Behavior Change is Hard. Practice? Seriously, Practice? Seriously,

Like Homework? ARGH!Like Homework? ARGH!

Behavior Change is Hard. Behavior Change is Hard. Practice? Seriously, Practice? Seriously,

Like Homework? ARGH!Like Homework? ARGH!

Yes, Virginia…Yes, Virginia… behavior change takes practicebehavior change takes practice

How did you learn to….How did you learn to…. ride a bike?ride a bike? drive a car?drive a car? play an instrument?play an instrument? develop meaningful partnerships?develop meaningful partnerships?

Behavior changeBehavior change buck up little camper?buck up little camper?

Considering the Sociocultural Context of Care

Ethic of Care: BalanceEthic of Care: BalanceEthic of Care: BalanceEthic of Care: Balance

Balance of self, care partner, and Balance of self, care partner, and constellation of caring othersconstellation of caring others

Quality of life for both care Quality of life for both care recipients and their care partners recipients and their care partners

Avoiding Either/OrAvoiding Either/Or Moving toward Both/AndMoving toward Both/And Intervention strategies often Intervention strategies often

similar for both.similar for both.

If we build it…If we build it…If we build it…If we build it…

A) they will come.A) they will come. B) they will come…not so much.B) they will come…not so much.

Challenges in “selling” programs Challenges in “selling” programs and services. and services.

Consumer choice assumes they Consumer choice assumes they know what exists and what will know what exists and what will work for them.work for them.

One size doesn’t….One size doesn’t….

Professional messages that Professional messages that can make a positive can make a positive

difference . . . difference . . .

Professional messages that Professional messages that can make a positive can make a positive

difference . . . difference . . . 1.1. It’s critical to take care of yourself when caregiving.It’s critical to take care of yourself when caregiving.

2.2. Maintain contact with friends and engage in outside Maintain contact with friends and engage in outside activities.activities.

3.3. You have a right to set limits and to say “NO”.You have a right to set limits and to say “NO”.

4.4. Begin taking breaks early in caregiving — It’s not Begin taking breaks early in caregiving — It’s not selfish!selfish!

5.5. Make caregiving decisions based on needs of Make caregiving decisions based on needs of everyone involved, not just the care recipient’s everyone involved, not just the care recipient’s needs and desires.needs and desires.

6.6. Focus on what you have done well — and learn to Focus on what you have done well — and learn to forgive!forgive!

7.7. Caregiving does not end with a move to a care Caregiving does not end with a move to a care facility.facility.

8.8. Asking for help is a sign of strength.Asking for help is a sign of strength.

Ethic of CareEthic of CareEthic of CareEthic of Care

An ethic of care is viewed in a An ethic of care is viewed in a relationship as a balance of self relationship as a balance of self (e.g. family caregiver) and a (e.g. family caregiver) and a constellation of caring others constellation of caring others (e.g., care recipient, other family (e.g., care recipient, other family members, and direct care members, and direct care workers).workers).

It is not conceptualized as an It is not conceptualized as an initial position of self-concern initial position of self-concern versus other-concern.versus other-concern.

An Ethic of CareAn Ethic of CareAn Ethic of CareAn Ethic of Care

…….maximizes the quality of life of .maximizes the quality of life of both care partners.both care partners.

……may better capture the full range may better capture the full range of a caring community and lead of a caring community and lead us toward healthy aging us toward healthy aging communities where care communities where care recipients and their care recipients and their care partners are more partners are more psychologically and socially psychologically and socially integrated into our society (Coon integrated into our society (Coon et al., 1999; Noddings, 1994).et al., 1999; Noddings, 1994).

Significance (statistical & clinical: symptomatology, QOL, social significance, social validity)

Support: Self-care/Informal Support/Formal Support

Helpline I&R

Skill-building groups

Variability within Level by Support and Significance: An Individual Level Example

Psychotherapy

Cost (provider/caregiver/care recipient/family)

Intensity (frequency, duration, length)

Helpline I&R

Skill-building groups

Variability within Level by Intensity and Cost: An Individual Level Example

Psychotherapy

Key Steps: IDEAL Key Steps: IDEAL Key Steps: IDEAL Key Steps: IDEAL

IdentifyIdentify

DescribeDescribe

ExpressExpress

AssertAssert

ListenListen

Tips for Self-CareTips for Self-CareTips for Self-CareTips for Self-Care

Sleep & RestSleep & Rest NutritionNutrition ExerciseExercise Time with FriendsTime with Friends Keep your own appointmentsKeep your own appointments

(physician, dentist, health and (physician, dentist, health and social service providers)social service providers)

Problem-solving.Problem-solving. prioritize & organize timeprioritize & organize time

Respite Care – Taking a BreakRespite Care – Taking a Break Spiritual PracticesSpiritual Practices

Behavioral ChainBehavioral ChainBehavioral ChainBehavioral Chain

TriggerTrigger BehaviorBehaviorReactionReaction

The only thing that you as a caregiver have The only thing that you as a caregiver have control over are TRIGGERS and REACTIONS. control over are TRIGGERS and REACTIONS.

Occasionally, however, we can’t change the Occasionally, however, we can’t change the TRIGGERS. During those times, changing how TRIGGERS. During those times, changing how you REACT to the behavior could keep the you REACT to the behavior could keep the situation from getting worse.situation from getting worse.

Summary of EBT Review Summary of EBT Review Summary of EBT Review Summary of EBT Review

Three categories of treatments met Three categories of treatments met EBT criteria in this review:EBT criteria in this review:

Psychoeducational Programs Psychoeducational Programs (n=23)(n=23)

Psychotherapy (n=4) (CBT)Psychotherapy (n=4) (CBT)

Multi-component Interventions Multi-component Interventions (n=3)(n=3)Coon, D. et al., (in press). EBTs for Distress in Family Caregivers of Older

Adults. American Psychological Association.

Gallagher-Thompson, D. & Coon, D.W. (2007). Evidence-Based Psychological Treatments for Distress in Family Caregivers of Older Adults, Psychology and Aging, 22, 37-51.


Treatment and Ethnicity ConditionsTreatment and Ethnicity Conditions


Treatment and Ethnicity ConditionsTreatment and Ethnicity Conditions ANOVA F ANOVA F aa

T T bb E E cc T x E T x E dd d d ee

CES-D, TotalCES-D, Total 4.96 *4.96 * 0.050.05 0.090.09 .26.26

CES-D, Well BeingCES-D, Well Being 0.680.68 0.220.22 0.000.00

CES-D, Depressive AffectCES-D, Depressive Affect 5.14**5.14** 0.210.21 0.210.21 .26.26

CES-D, Somato-MotorCES-D, Somato-Motor 1.661.66 0.050.05 0.000.00

CES-D, InterpersonalCES-D, Interpersonal 6.52**6.52** 0.310.31 1.331.33 .30.30

Positive CopingPositive Coping 6.77 **6.77 ** 0.090.09 0.000.00 .35.35

Negative CopingNegative Coping 2.86*2.86* 0.480.48 2.512.51

Support SatisfactionSupport Satisfaction 0.060.06 0.050.05 0.010.01

Negative InteractionNegative Interaction 3.60**3.60** 2.692.69 0.050.05 .19.19

RMBPC ConditionalRMBPC Conditional 2.202.20 0.190.19 0.410.41

*p < .06; ***p < .06; **pp<.05.<.05.bb T = Treatment main effect, T = Treatment main effect, cc E = Ethnicity main effect, E = Ethnicity main effect, dd T x E = Treatment X Ethnicity T x E = Treatment X Ethnicity

interactioninteractionee The effect size values for Cohen’s d correspond to the significant F in each row. The effect size values for Cohen’s d correspond to the significant F in each row.

A Call for Coordination A Call for Coordination of Multiple Levels of of Multiple Levels of

InterventionsInterventions

A Call for Coordination A Call for Coordination of Multiple Levels of of Multiple Levels of

InterventionsInterventionsIndividual

I&R/Helpline, skill-building groups, psychotherapy.

InterpersonalEarly stage groups for care partners.

Organizational/SystemMCO/CBO care pathway partnerships.

CommunityMedia campaigns or CCRC.

PolicyNFCSP, AMA Caregiver Self Assessment Tool

LTC: Comments from the Field

What are the needs of LTC family caregivers?

Reassurance about the facilities and the process

Emotional support; grief and worry (loneliness for spouses)

Permission to place (“not the enemy”) Heroes & Advocates (reciprocal

relationship)

Coon, Walker, Felix, Keaveny, & Allen (2011)

LTC: Comments from the Field

Ways to address needs ADRD & LTC education Public Awareness Campaigns Tools to change perceptions Referrals: Lifeline to the Outside World Communication skills

• Help families create more meaningful connections with dementia patients (Staff)

• Dealing with difficult family members (Staff)• Enhance communication with staff and other

family members about problems (Families)• Mediation between family members (Both)

Coon, Walker, Felix, Keaveny, & Allen (2011)

LGBT Caregiving Themes from the Field

Previous conflictual relationship re: sexual orientation

Responsibilities falling to the “single” child

Conflict with employer given not a “real” relationship

Heterosexism: in-home, assisted living, nursing homes

Partner-relative conflict over substitute decision-making

Diversity: accepting straight caregivers for gay elders

Psychological Psychological AppraisalAppraisal

Health Health EffectsEffects



PlacementPlacementCaregiver/CR Caregiver/CR TrajectoryTrajectory

Minor?Minor?

Benign?Benign?

Psychiatric/Psychiatric/PhysicalPhysical

MorbidityMorbidity

??

DistressDistress ??

DeathDeath

??

??

Chronic Stress Trajectory Chronic Stress Trajectory of Caregiving for Older of Caregiving for Older

AdultsAdults


AdultsAdults

CaregiverCaregiverInterventionIntervention

ResearchResearchDeathDeath

EPIC: Early Stage Partners in CareEPIC: Early Stage Partners in CareEPIC: Early Stage Partners in CareEPIC: Early Stage Partners in Care

Group based dyadic interventionGroup based dyadic intervention Early stage individuals & care partnersEarly stage individuals & care partners

Stress inoculation, education, skill Stress inoculation, education, skill buildingbuilding CommunicationCommunication RelaxationRelaxation Problem solvingProblem solving

Care Values & PreferencesCare Values & Preferences

PreparednessPreparedness

Coon & Whitlatch, 2011

CARE VALUESINDEPENDENCE Do things for self Come/go as you please Organize daily routines in your

own way Spend money how you want Have something to do Have time for self Make own financial decisions

ACTIVITIES WITH OTHERS Do things with others Be with family/friends Be part of family celebrations Keep in touch with the past Keep in touch with distant

family and friends

WHO HELPS OUT Keep the same doctor Choose the family who helps Have reliable help Choose who is excluded from helping

you

REDUCING FAMILY STRESS Reducing your family’s or friends’

worries, concerns and how to cope with physical demands, emotional strain, and financial impact related to your care.

That CP not put his/her life on hold for you

Have money to leave the family

SAFETY Feel safe inside the home Be in touch with others in an emergency Be safe from crime

Reamy et al, 2011

CARE TASKS

SELF

PAID HELPER

FAMILY & FRIENDSTAKING

MEDICATION

FINANCIAL/LEGAL MATTERS

DRIVING/

TRANSPORTATION

LAUNDRY

COOKIN

G

SHOPPING FOR

FOOD

HOUSEWOR

K

BATHING/

SHOWERING

DRESSING/

UNDRESSINGEATING

DOING THINGS I ENJOY

HELP DURING THE NIGHT

TOILETING

GETTING IN AND OUT OF BED

WHEN I FEEL RESTLESS/BORED

TO BE WITH ME

DURING THE

DAY

MAKING DOCTOR’S APPOINTMENTS

TO BE WITH ME

WHEN OUTSIDE OF

THE HOUSE

Psychological Psychological AppraisalAppraisal




PlacementPlacementCaregiver/CR Caregiver/CR TrajectoryTrajectory

Minor?Minor?

Benign?Benign?

Psychiatric/Psychiatric/PhysicalPhysical

MorbidityMorbidity

??

DistressDistress ??

DeathDeath

??

??


AdultsAdults


AdultsAdults

DeathDeath

Post-Bereavement and Post-Post-Bereavement and Post-Institutionalization Institutionalization

Post-Bereavement and Post-Post-Bereavement and Post-Institutionalization Institutionalization

217 Care-Recipients died within 18 217 Care-Recipients died within 18 months of randomization; end-of-life months of randomization; end-of-life dementia care and effects on dementia care and effects on bereavement (Schulz et al., NEJM, bereavement (Schulz et al., NEJM, 2003)2003)

180 Care-Recipients were placed in a 180 Care-Recipients were placed in a long-term care facility within 18 long-term care facility within 18 months of randomization; effects of months of randomization; effects of placement transition (Schulz et al., placement transition (Schulz et al., JAMA, 2004)JAMA, 2004)

Caregiver Responses Caregiver Responses Following Care-Recipient Following Care-Recipient

PlacementPlacement

Caregiver Responses Caregiver Responses Following Care-Recipient Following Care-Recipient

PlacementPlacement No significant change in either depressive No significant change in either depressive

symptomotology (CES-D) or anxiety symptomotology (CES-D) or anxiety (State Trait Inventory)(State Trait Inventory)

CES-D was higher for caregivers who were CES-D was higher for caregivers who were married to the care recipient, visited married to the care recipient, visited more frequently, or were less satisfied more frequently, or were less satisfied with help received from otherswith help received from others

Anxiety was higher for caregivers who Anxiety was higher for caregivers who visited more frequently, or were less visited more frequently, or were less satisfied with help received from otherssatisfied with help received from others

Schulz et al., Schulz et al., JAMA. JAMA. 2004;292:961-9672004;292:961-967

Post-Bereavement CES-D Post-Bereavement CES-D Scores As a Function of Time Scores As a Function of Time

Since Death (n=217) Since Death (n=217)

Post-Bereavement CES-D Post-Bereavement CES-D Scores As a Function of Time Scores As a Function of Time

Since Death (n=217) Since Death (n=217)

10

15

20

25

30

0 10 20 30 40 50 60 70 80 90

Time (Weeks)

Pre

dic

ted C

ES-D

Sco

re

Schulz et al. Schulz et al. NEJMNEJM. 2003;349:1936-1942.. 2003;349:1936-1942.

ContinuedContinuedDepression/Depression/

ReengagementReengagement

DistressDistress

RecoveryRecovery

ReliefRelief




PlacementPlacementCG/CG/CR TrajectoryCR Trajectory

MinorMinor

BenignBenign

Psychiatric/Psychiatric/PhysicalPhysicalMorbidityMorbidity

DistressDistress

DeathDeath


AdultsAdults


AdultsAdults

DeathDeath

PsychologicPsychological Appraisalal Appraisal

Considering the Sociocultural Considering the Sociocultural ContextContext

Considering the Sociocultural Considering the Sociocultural ContextContext

Sociocultural influences can shape:Sociocultural influences can shape: signs and symptoms of caregiver distresssigns and symptoms of caregiver distress

caregivers’ understanding of their feelings, thoughts, caregivers’ understanding of their feelings, thoughts, behavior views of others and the environmentbehavior views of others and the environment

help-seeking behavior, treatment practiceshelp-seeking behavior, treatment practices

Sociocultural context can also create barriers:Sociocultural context can also create barriers: language barriers, culturally insensitive services, language barriers, culturally insensitive services,

financial constraintsfinancial constraints

Providers bring their own sociocultural history to their Providers bring their own sociocultural history to their interactions and attempts to provide services to family interactions and attempts to provide services to family caregiverscaregivers

DefinitionsDefinitions

" Caregiver Assessment" refers to a " Caregiver Assessment" refers to a systematic process of gathering systematic process of gathering information that describes a caregiving information that describes a caregiving situation and identifies the particular situation and identifies the particular problems, needs, resources and strengths problems, needs, resources and strengths of the family caregiver. It approaches of the family caregiver. It approaches issues from the caregiver’s perspective and issues from the caregiver’s perspective and context, focuses on identifying what context, focuses on identifying what assistance the caregiver may need, and assistance the caregiver may need, and seeks to maintain the caregiver’s own seeks to maintain the caregiver’s own health and well-being.health and well-being.


Developed pre- and post caregiverDeveloped pre- and post caregiverassessment tool through a multi-assessment tool through a multi-step process:step process:

Convening a group of stakeholders for Convening a group of stakeholders for input throughoutinput throughout

Reviewing caregiver assessment in the Reviewing caregiver assessment in the science, practice, & policy literaturesscience, practice, & policy literatures

Identifying key domainsIdentifying key domains ( (Note: Other Note: Other domains were identified initially, but domains were identified initially, but eliminated through feedback due to time eliminated through feedback due to time constraints.constraints.))


Concentrating on measures with Concentrating on measures with strong reliability and validity with strong reliability and validity with established use in diverse groups of established use in diverse groups of caregiverscaregivers

Focusing on instruments and measures Focusing on instruments and measures sensitive to change with interventionsensitive to change with intervention

Aligning the tool with ASCAP Aligning the tool with ASCAP informationinformation


Pilot testing of questions with Pilot testing of questions with feedback from key stakeholdersfeedback from key stakeholders

Incorporating feedback into the Incorporating feedback into the current version of the toolcurrent version of the tool

Distributing the tool for Distributing the tool for administration and initial testingadministration and initial testing

Validating CAT and finalizing scoring Validating CAT and finalizing scoring mechanismmechanism


DomainsDomains Caregiver risksCaregiver risks

– Caregiving activities/responsibilities and Caregiving activities/responsibilities and impactimpact

– Physical healthPhysical health– Stress/strain/mood/burdenStress/strain/mood/burden

Potential resourcesPotential resources– Informal social support Informal social support – Pleasant activities/leisure time satisfactionPleasant activities/leisure time satisfaction

Project evaluationProject evaluation (administered only (administered only as part of the post evaluation)as part of the post evaluation)

CAT Delivery TipsCAT Delivery Tips

Technology versus ArtTechnology versus Art

Privacy and phone CAT Privacy and phone CAT administrationadministration

Help the caregiver see the CAT as Help the caregiver see the CAT as worthwhile; an opportunity to worthwhile; an opportunity to express their views; have their voice express their views; have their voice heard.heard.

Documents

The Many Faces of Family Caregivers David W. Coon, PhD Associate Vice Provost for Research Collaborations Senior Associate Dean for Faculty & Research