The Many Faces of Family Caregivers David W. Coon, PhD Associate Vice Provost for Research Collaborations Senior Associate Dean for Faculty & Research Virginia G.
Download ReportTranscript The Many Faces of Family Caregivers David W. Coon, PhD Associate Vice Provost for Research Collaborations Senior Associate Dean for Faculty & Research Virginia G.
The Many Faces of Family Caregivers David W. Coon, PhD Associate 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…. There are four kinds of people in the world. Those who have been caregivers, are currently caregivers, will be caregivers, will need caregivers. Rosalynn Carter Why is Caregiving Important? An estimated 44 million Americans provide unpaid care to another adult More than 1 in 5 adults in the U.S. Family care is the most important source of assistance for people with chronic conditions who need long-term care (LTC) Without this “informal” workforce, the entire health care and LTC system would be in jeopardy Clearly, this expands when considering kinship care and care for children and teens. Value of Family Caregiving is Staggering Economic value of informal care is measured as the cost of replacing informal (unpaid) care with formal (paid) care. Estimated value of this family care is over $375 billion (AARP). In 2009, nearly 11 million Americans provided 12.5 billion hours of unpaid care to family & friends with ADRD. Estimated value of this unpaid care: Almost $144 billion More than what Medicare and Medicaid spent combined on those with Alzheimer’s disease. – Generation Alzheimer’s (Alzheimer’s Association 2011) Caregiving is Beyond the Critical Tipping Point Family caregivers must… Care for patients discharged “sicker and quicker” Navigate health care systems that lack care coordination Deal with “information overload” and choices Manage difficult medication schedules and sophisticated technology in the home Juggle competing demands of work and care Often provide/coordinate caregiving long distance Locate, access, and monitor quality paid help All I ever needed to know… I learned in kindergarten. Robert Fulghum I don’t think Robert Fulghum was a family caregiver. D.W. Coon Family Caregivers: Who Are They? Caregiver - The Hidden Patient AT RISK FOR: Depression (>50% 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, 804815; Schulz, et al, 1995. The Gerontologist, 35, 771-791; Schulz & Beach, 1999, JAMA, 282, 2215-2219 Why Investigate Diversity in Caregiving? Assessments/ Instruments Recruitment Retention Addressing Diversity Dissemination Adoption Interventions Services Sociocultural Influences on Caregiving The meaning of illness Who is “family” Values and attitudes Decision-making concerning elders Style of communication View of outside help and authority Definitions of acceptable behavior Coping strategies Culturally-Biased Assumptions of Professionals “Normal” behavior is universal and applies to all cultures in the same manner. Historical background is irrelevant to immediate issues. Independence is desirable; dependence is not. We need to help the individual “adapt” to institutions. Services are to support the individual’s (not his/her group’s) growth and development. We already know our biases and culturallylearned assumptions. *Adapted from Paul P. Pederson 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? Positive Aspects & Caregiver Gain Opportunity to give back Serve as a role model Draws family members closer Prevention of loved one’s deterioration Increase self-esteem Enhanced sense of purpose or meaning Feeling appreciated (Farran et al., 1991: Kramer, 1007; Miller & Lawton, 1007; NAC/AARP, 2004) Variations in Positive Aspects of Caregiving? African Americans report higher PAC levels than non-Hispanic Whites (Haley et al., 2004; Hilgeman et al., 2009). Latinas reported higher PAC levels than Anglo women. Less acculturated Latinas reporter higher PAC levels than their more acculturated counterparts (Coon et al., 2004). PAC played a role in care recipient placement such lower PAC levels accounted for greater rate of placement by more acculturated Latinas compared with less acculturated Latinas and Anglo women (Mausbach, Coon, et al., 2004). Intervention Strategies with African Americans Caregivers Teach concrete problem-solving skills with a practice base. Emphasis on physical health Relief for economic burdens of caregiving Teach advocacy skills and mobilize resources including African American national organizational partnerships. Storytelling/multimodal approaches. Integration of religiosity/spirituality Suggestions for Working Effectively With Latino Caregivers Platicar- take time to get to know the person & share personal information about yourself (personalismo). Attend to family first. Validate complementary yet conflicting feelings Use bilingual/bicultural staff whenever possible. Recognize acculturation status. “Papers”. Family involvement. Avoid the autoassumption of multiple caregivers. (Gallagher-Thompson, Arean et al., 2003; Coon et al., 2004; Talamantes et al., 2006) Strategies for Chinese caregivers Draw on cultural strengths-- value of education and professionals Psychoeducational approach is appealing for many family members. May need individual approach Help acknowledge psychological distress Less likely to acknowledge initially Assess undetected depression Assess non-caregiving stressors Remove practical barriers (Gallagher-Thompson et al., 2008; 2010; Wang et al., 2006) Working with American Indian, Alaskan Native, First Nations Families Little “data”. Diversity across groups. Heterogeneity within groups. Histories distinct and shared. Community-based and peer led education using American Indian educators or peer counselors to inform. Unwanted intervention vs. denial. Spiritual practice and religious faith leaders as partners. Integration of traditional healers with Western model in accordance with family’s wishes. Begin with indirect communication approaches focused on specific behaviors. Small groups with education and family inclusion in care planning (Hendrix & Swift Cloud-LeBeau, 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 Old 834,000 900,000 800,000 700,000 600,000 447,000 500,000 324,000 400,000 300,000 214,000 131,000 200,000 72,000 100,000 0 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 Assessment An Opportunity: Screening & Assessment Tools Focus on physically impaired care recipient Services (e.g., respite) provided based primarily, if not solely, on care recipient Screens often remain limited, particularly in terms of behavioral health needs Behavioral health/emotional well-being Coping Informal support Even still, often cumbersome Ignore the care triad (CR, CG & SP) Arizona CAT Arizona Caregiver Assessment Tool (CAT) To assist in respite allocation and identification of relevant services for the caregiver (Pilot in Lifespan Respite Grant) Drawn from the scientific and clinical literature Refined through focused discussions with service providers, administrators, family caregivers Tied to assessment of care recipient Scales/items with history of use with diverse groups of caregivers CAT: Development Process Domains • Caregiver risks – Caregiving activities/responsibilities and impact – Physical health – Stress/strain/mood/burden • Potential resources – Informal social support – Pleasant activities/leisure time satisfaction • Project evaluation (administered only as part of the post evaluation) Involvement: Recruitment and Retention Multicultural Sample 614 participants in sample 3 ethnic/racial groups Ethnic Group Latino/Hispanic Non-Hispanic White Chinese n 288 189 137 Enrollment Success 70 60 50 40 30 20 Caucasian 10 Chinese 0 Hispanic Media Outreach Method Prof essional Non-Prof essional Confianza Triangle of Successful Recruitment Latino Individuals 1 Community Agency 3 2 Researcher 1. Community agency establishes trust with Latino individuals 2. Researcher establishes trust with the agency 3. Researcher indirectly establishes trust with the individual BUT……. WHAT ABOUT MIAMI??? Intervention Programs: Intervention Programs and Services: Availability: What is available and to whom? Accessibility: How does one access it? What impedes access? Acceptability: How does it meet needs? How does it fit with who I am/we are? 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! Chronic Stress Trajectory of Caregiving for Older Adults CG/ CR Trajectory Psychological Appraisal Health Effects Placement Initiate IADL CG Expand ADL CG Benign Distress Minor Psychiatric/ Physical Morbidity Death Death Distress Relief Continued Depression/ Recovery Reengagement What’s Successful? Implementing Caregiver Interventions Education alone. Care Management. Respite. Support Groups. Environmental. Technological. Education & Skill Training (CR, CG, both). Psychotherapy/Counseling. Multi-component. Coon, D. et al. (in press). Family Caregivers of Older Adults. In F. Scogin, Evidence-based Psychological Treatments for 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. CarePRO: Care Partners Reaching Out 10 Weeks (Modification of CWC) Alternating Weeks of Psychoeducational/ Skill-building Groups & Coach Calls • • • • • TBR & Problem solving Mood management Stress management Pleasant Events Effective communication • Home Practice Respite offered through area agencies on aging Over 600 Arizona and Nevada family caregivers in the next 3 years. Strategies used effectively with White, Hispanic, African American and Chinese/Chinese American. Tailoring Psychosocial Interventions to Latino Caregivers Revise Recruitment Strategies. Platicar and Socialization. Validate complementary yet conflicting feelings. Role and reality. Family before me. Address roadblocks to “Taking Care of the Caregiver.” Conceptual Translation. Community Advisory Board/Partners. Caregiver and service provider feedback. Case Example Valeria is a 57-year-old Latina who has been caring for her 64-year-old husband Ernesto. The couple has an 18-year-old grandson living with them who provides minimal assistance with Ernesto’s care. She came to the group stating that after 25 years of marriage, she was having a difficult time understanding her husband’s behavior: he was diagnosed with Alzheimer’s disease a little over a year ago, and in this short period of time, had his driver’s license revoked and lost contact with many of his friends. Strategies Caregiver Can Use to Prevent the Problem Behavior 1. Set out fresh clothes for him and reward him when he wears them; give him a compliment on how nice he looks or make him his favorite breakfast. 2. Hide the outfit he really likes where he cannot find it. 3. Buy him several pairs of the same pants and shirt so that he thinks he is wearing his favorite outfit 4. When he goes to bed, take his clothes and put them in the laundry machine. Set the machine on the soak cycle so that if he looks for them and notices they are wet, he will 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. 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. Less trapped and less guilty. Happier. More relaxed. Less embarrassed with those who know me. Everyone will still think he is dirty and his clothes are dirty. My children will think I have given up. 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. Four Pleasant Events a Day Keep the Blues Away They don’t have to be huge. They must be Consciously Chosen, and Deliberately Done to experience control. Daily Engagement is Key. 1. Events Control Mood. 2. To some extent you can control events. 3. Therefore, you can control mood. Social Support & Effective Communication We get by with a little help from our friends…. “After a hard day at the office, it’s nice to be with your own kind, isn’t it?” BUT…. IS ALL SOCIAL SUPPORT GOOD? Mindful Breath Choose a word that represents relaxation for you (peace, relax, calm) Four deep breaths; mouth your word during exhale Rate tension (before & after) Practice! Alternative: Tense muscles on inhale and release while mouthing your word. Interventions Needing Additional Support Respite Effective use of “down time” Care Management & Memory Clinics The “Box” Support Groups Self-efficacy as Moderator (Rabinowitz et al., 2006) Assessments/ Instruments Recruitment Retention Addressing Diversity Dissemination Adoption Interventions Services Multiple Levels of Interventions Individual I&R/Helpline, skill-building groups, psychotherapy. Interpersonal Early stage groups for spouses. Organizational/System MCO/CBO care pathway partnerships. Community Media campaigns or CCRC. Policy Lifespan Respite, NFCSP, AMA Caregiver Tool Taking time to take care of yourself is the BEST GIFT you can give to the person who needs your care RESPITE helps give you the time and space to do so. Concluding Comments Pluralism… The recognition of the contribution of each group to the common civilization. We can learn from one another across our caregiving journeys. Concluding Comments The truly strong in our society are those who reach out for support, whether the abscess is on the knee or on the soul. Courage is the willingness to face the unexpected, for that is what defines it. Individuals facing chronic illness or impairment and their caregivers are incredibly courageous. Skilled and caring professionals help individuals and family caregivers maintain that courage. Aging & Behavioral Health Projects Family Caregiver of Dementia Patients in LTC CarePRO: Care Partners Reaching Out EPIC: Early Stage Partners in Care Prostate Cancer Couples Project For information, please call: (602) 496-1239 1-877-852-5420 (out of area) (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, decisionmaking, 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 1. Working on Computer 2. Reading Spiritual Books 2 3 5 6 8. Playing Tennis 10. Riding the light rail Total 6. Listening to Car-Talk 9. Meeting with Friends 5. Browsing in Downtown Library 7. Listening to Music 7 3. Attending a Good Movie 4. Brisk Walk around the Park 4 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 Decisionmaking 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). Assessments/ Instruments Recruitment Retention Addressing Diversity Dissemination Adoption Interventions Services The Power of Pleasant Activity in One’s Life Situation Interventions Needing Additional Support Support Groups Self-efficacy as Moderator (Rabinowitz et al., 2006) Care Management & Memory Clinics The “Box” Respite Effective use of “down time” A Quality Family Caregiver Assessment Is... Multi-dimensional Context aware Culturally relevant and appropriate Easy and efficient to use Administered in a systematic way Sensitive to change Understandable (transparent) – to caregiver and professional Instructive – it guides practice Concluding Comments Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow.” Mary Anne Radmacher Sustaining Behavior Change Home practice, Maintenance Guides & Boosters Multiple Levels of Intervention & Multiple Strategies Infusing helpful skills into care management, respite, support groups and related activities. Ongoing examination of ways to tailor interventions to address diversity in our society (gender, race/ethnicity, rural/urban, etc.) Multiple Disciplines Working in Partnership Bridging the Research & Community Gap (Coon, Lipman, & Ory, 2003; Coon, Gallagher-Thompson & Thompson, 2003; Coon et al., 2005) Analysis of Covariance (ANCOVA) for Treatment and Ethnicity Conditions ANOVA F a Tb Ec TxEd de CES-D, Total 4.96 * 0.05 0.09 .26 CES-D, Well Being 0.68 0.22 0.00 CES-D, Depressive Affect 5.14** 0.21 0.21 CES-D, Somato-Motor 1.66 0.05 0.00 CES-D, Interpersonal 6.52** 0.31 1.33 .30 Positive Coping 6.77 ** 0.09 0.00 .35 Negative Coping 2.86* 0.48 2.51 Support Satisfaction 0.06 0.05 0.01 Negative Interaction 3.60** 2.69 0.05 RMBPC Conditional 2.20 0.19 0.41 .26 .19 *p < .06; **p<.05. b T = Treatment main effect, c E = Ethnicity main effect, e The effect size values for Cohen’s d correspond to the significant F in each row. d T x E = Treatment X Ethnicity interaction Sustaining Behavior Change Homework Maintenance Guides & Boosters Multiple Levels of Intervention & Multiple Strategies Target both High-Risk & Large Segments of the Population Take the “Long View” of Outcomes Multiple Disciplines Working in Partnership Bridging the Research & Community Gap (Coon, Lipman, & Ory, 2003; Coon, Gallagher-Thompson & Thompson, 2003; Coon et al., 2005) Behavior Change is Hard. Practice? Seriously, Like Homework? ARGH! Yes, Virginia… behavior change takes practice How did you learn to…. ride a bike? drive a car? play an instrument? develop meaningful partnerships? Behavior change buck up little camper? Considering the Sociocultural Context of Care Ethic of Care: Balance Balance of self, care partner, and constellation of caring others Quality of life for both care recipients and their care partners Avoiding Either/Or Moving toward Both/And Intervention strategies often similar for both. If we build it… A) they will come. B) they will come…not so much. Challenges in “selling” programs and services. Consumer choice assumes they know what exists and what will work for them. One size doesn’t…. Professional messages that can make a positive difference . . . 1. 2. 3. 4. 5. 6. 7. 8. It’s critical to take care of yourself when caregiving. Maintain contact with friends and engage in outside activities. You have a right to set limits and to say “NO”. Begin taking breaks early in caregiving — It’s not selfish! Make caregiving decisions based on needs of everyone involved, not just the care recipient’s needs and desires. Focus on what you have done well — and learn to forgive! Caregiving does not end with a move to a care facility. Asking for help is a sign of strength. Ethic of Care An ethic of care is viewed in a relationship as a balance of self (e.g. family caregiver) and a constellation of caring others (e.g., care recipient, other family members, and direct care workers). It is not conceptualized as an initial position of self-concern versus other-concern. An Ethic of Care ….maximizes the quality of life of both care partners. …may better capture the full range of a caring community and lead us toward healthy aging communities where care recipients and their care partners are more psychologically and socially integrated into our society (Coon et al., 1999; Noddings, 1994). Variability within Level by Support and Significance: An Individual Level Example Helpline I&R Skill-building groups Psychotherapy Support: Self-care/Informal Support/Formal Support Significance (statistical & clinical: symptomatology, QOL, social significance, social validity) Variability within Level by Intensity and Cost: An Individual Level Example Helpline I&R Skill-building groups Psychotherapy Intensity (frequency, duration, length) Cost (provider/caregiver/care recipient/family) Key Steps: IDEAL Identify Describe Express Assert Listen Tips for Self-Care Sleep & Rest Nutrition Exercise Time with Friends Keep your own appointments (physician, dentist, health and social service providers) Problem-solving. prioritize & organize time Respite Care – Taking a Break Spiritual Practices Behavioral Chain Trigger Behavior Reaction The only thing that you as a caregiver have control over are TRIGGERS and REACTIONS. Occasionally, however, we can’t change the TRIGGERS. During those times, changing how you REACT to the behavior could keep the situation from getting worse. Summary of EBT Review Three categories of treatments met EBT criteria in this review: Psychoeducational Programs (n=23) Psychotherapy (n=4) (CBT) Multi-component Interventions (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. Analysis of Covariance (ANCOVA) for Treatment and Ethnicity Conditions ANOVA F a Tb Ec TxEd de CES-D, Total 4.96 * 0.05 0.09 .26 CES-D, Well Being 0.68 0.22 0.00 CES-D, Depressive Affect 5.14** 0.21 0.21 CES-D, Somato-Motor 1.66 0.05 0.00 CES-D, Interpersonal 6.52** 0.31 1.33 .30 Positive Coping 6.77 ** 0.09 0.00 .35 Negative Coping 2.86* 0.48 2.51 Support Satisfaction 0.06 0.05 0.01 Negative Interaction 3.60** 2.69 0.05 RMBPC Conditional 2.20 0.19 0.41 .26 .19 *p < .06; **p<.05. b T = Treatment main effect, c E = Ethnicity main effect, e The effect size values for Cohen’s d correspond to the significant F in each row. d T x E = Treatment X Ethnicity interaction A Call for Coordination of Multiple Levels of Interventions Individual I&R/Helpline, skill-building groups, psychotherapy. Interpersonal Early stage groups for care partners. Organizational/System MCO/CBO care pathway partnerships. Community Media campaigns or CCRC. Policy NFCSP, AMA Caregiver Self Assessment Tool LTC: Comments from the Field Coon, Walker, Felix, Keaveny, & Allen (2011) 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) LTC: Comments from the Field Coon, Walker, Felix, Keaveny, & Allen (2011) 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) 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 decisionmaking Diversity: accepting straight caregivers for gay elders Chronic Stress Trajectory of Caregiving for Older Adults Caregiver/CR Trajectory Psychological Appraisal Health Effects Placement Initiate IADL CG Expand ADL CG Benign? Distress ? ? Minor? Psychiatric/ Physical Morbidity ? ? Death Death Caregiver Intervention Research EPIC: Early Stage Partners in Care Group based dyadic intervention Early stage individuals & care partners Stress inoculation, education, skill building Communication Relaxation Problem solving Care Values & Preferences Preparedness Coon & Whitlatch, 2011 CARE VALUES WHO HELPS OUT Keep the same doctor Choose the family who helps Have reliable help Choose who is excluded from helping you INDEPENDENCE Do things for self Come/go as you please Organize daily routines in your own way Spend money how you want REDUCING FAMILY STRESS Have something to do Reducing your family’s or friends’ worries, Have time for self concerns and how to cope with physical Make own financial decisions 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 ACTIVITIES WITH OTHERS Do things with others Be with family/friends SAFETY Be part of family celebrations Feel safe inside the home Keep in touch with the past Keep in touch with distant family and Be in touch with others in an emergency friends Be safe from crime Reamy et al, 2011 CARE TASKS SELF FAMILY & FRIENDS PAID HELPER Chronic Stress Trajectory of Caregiving for Older Adults Caregiver/CR Trajectory Psychological Appraisal Health Effects Placement Initiate IADL CG Expand ADL CG Benign? Distress ? ? Minor? Psychiatric/ Physical Morbidity ? ? Death Death Post-Bereavement and PostInstitutionalization 217 Care-Recipients died within 18 months of randomization; end-of-life dementia care and effects on bereavement (Schulz et al., NEJM, 2003) 180 Care-Recipients were placed in a longterm care facility within 18 months of randomization; effects of placement transition (Schulz et al., JAMA, 2004) Caregiver Responses Following Care-Recipient Placement No significant change in either depressive symptomotology (CES-D) or anxiety (State Trait Inventory) CES-D was higher for caregivers who were married to the care recipient, visited more frequently, or were less satisfied with help received from others Anxiety was higher for caregivers who visited more frequently, or were less satisfied with help received from others Schulz et al., JAMA. 2004;292:961-967 Post-Bereavement CES-D Scores As a Function of Time Since Death (n=217) Predicted CES-D Score 30 25 20 15 10 0 10 20 30 40 50 Time (Weeks) Schulz et al. NEJM. 2003;349:1936-1942. 60 70 80 90 Chronic Stress Trajectory of Caregiving for Older Adults CG/ CR Trajectory Psychological Appraisal Health Effects Placement Initiate IADL CG Expand ADL CG Benign Distress Minor Psychiatric/ Physical Morbidity Death Death Distress Relief Continued Depression/ Recovery Reengagement Considering the Sociocultural Context Sociocultural influences can shape: signs and symptoms of caregiver distress caregivers’ understanding of their feelings, thoughts, behavior views of others and the environment help-seeking behavior, treatment practices Sociocultural context can also create barriers: language barriers, culturally insensitive services, financial constraints Providers bring their own sociocultural history to their interactions and attempts to provide services to family caregivers Definitions " Caregiver Assessment" refers to a systematic process of gathering information that describes a caregiving situation and identifies the particular problems, needs, resources and strengths of the family caregiver. It approaches issues from the caregiver’s perspective and context, focuses on identifying what assistance the caregiver may need, and seeks to maintain the caregiver’s own health and well-being. CAT: Development Process Developed pre- and post caregiver assessment tool through a multistep process: Convening a group of stakeholders for input throughout Reviewing caregiver assessment in the science, practice, & policy literatures Identifying key domains (Note: Other domains were identified initially, but eliminated through feedback due to time constraints.) CAT: Development Process Concentrating on measures with strong reliability and validity with established use in diverse groups of caregivers Focusing on instruments and measures sensitive to change with intervention Aligning the tool with ASCAP information CAT: Development Process Pilot testing of questions with feedback from key stakeholders Incorporating feedback into the current version of the tool Distributing the tool for administration and initial testing Validating CAT and finalizing scoring mechanism CAT: Development Process Domains Caregiver risks – Caregiving activities/responsibilities and impact – Physical health – Stress/strain/mood/burden Potential resources – Informal social support – Pleasant activities/leisure time satisfaction Project evaluation (administered only as part of the post evaluation) CAT Delivery Tips Technology versus Art Privacy and phone CAT administration Help the caregiver see the CAT as worthwhile; an opportunity to express their views; have their voice heard.