Caregiver Consultant Refresher Training

1. Caregiver Consultant Refresher Training 2013 Minnesota Board on Aging and Minnesota Area Agencies on Aging This curriculum is owned by the State of Minnesota and cannot be reproduced or used without written permission.

2. Components of the Basic Caregiver Consultant Curriculum

3. Learning Objectives • Describe common caregiver challenges • Review key theories • Learn information about different cultures and communication tips • Learn key elements of a caregiver assessment and how to approach difficult topics • Provide overview about dementia capability training

4. Introductions • Name • Organization/job title • Geographic area served • Types of persons served (gender, age, race) • How does caregiver coaching fit within their role in their current position?

5. Context of Caregiving • Family plays a vital role • Every 1% decline in family caregiving, costs an estimated $30 million in formal care • Success of most care plans rests on family-centered approach to care • Can result in higher levels of stress, depression, reduced immunity, poorer physical care • Family caregivers with higher levels of stress-more likely to place

6. Studies Show that the Presence of a Family Caregiver: • Improves medical compliance • Reduces length of stay in hospital and hospital readmissions • Prevents unnecessary ER and other doctor visits • Prevents (or delays) premature nursing home placement • Improves quality of life Source: TCARE® (Tailored Caregiver Assessment and Referral) Presentation, November 2012

7. Our Role • Help navigate through the course of caregiving and various diseases. • Assessment, planning, and problem solving. • Emotional support

8. History of Minnesota Caregiver Coaching/Consulting Service • In 2000, Congress authorized first federal funding earmarked for services to support family caregivers. Title III-E of the Older Americans Act • State and AAAs recognized the need for a service to empower caregivers in their role and assist caregivers in achieving a more balanced lifestyle while caring for another person.The label given this service varied – with caregiver coaching used in some parts of the state and caregiver consulting used in others. For the purpose of this training, we’ll refer to it as the “caregiver consultant performs caregiver coaching.” • A group of state, AAAs and providers defined service key components, developed service standards and a standardized training curriculum to instruct professionals. • Today Minnesota has 50 – 60 trained caregiver consultants statewide

9. Assumptions for Caregiver Services • Aging is a family affair • People are naturally resourceful • Caregivers are resilient and have many strengths • Benefits for both caregivers and care receiver • Caregiver is the “expert” and the agenda comes from caregiver; caregiver consultant encourages caregiver responsibility

10. Service Definition caregiver coaching • Personalized service that equips family caregivers with knowledge, skills and tools to achieve a balanced lifestyle while caring for another person • They assist caregivers in identifying needs and values…facilitate goal-setting and development of person-centered plan….provide ongoing coachingand support to assist caregivers in reaching established goals • People who provide this service in MN are usually referred to as caregiver consultants.

11. Overall Goal of Caregiver Coaching Goal is to equip the caregiver with knowledge, skills and tools to become a stronger caregiver capable of self-directed care.

12. Three Main Functions of Caregiver Coaching • Help caregiver define reasonable, realistic, and attainable goals • Provide structure • Support, validate, and help caregiver “stay on track”

13. Components of the Basic Caregiver Consultant Curriculum

14. II. Caregiver Context Purpose To gain an understanding of the variety of situations faced by caregivers, and some of the areas where coaching can help them

15. Learning Objectives • Review common caregiving challenges • Review useful theories for understanding caregivers and discuss how these theories have been applied in your work

16. External Caregiver Circumstances • Conflicted families • Disconnected families • Argumentative families

17. Common Caregiver Challenges • Knowing enough • Lack of insight • Need for additional skills and more resources • Ability to match services and resources with needs and goals • Communication struggles • Self-talk/self-awareness • Asking/accepting help • Work/life balance

18. Group Discussion What types of caregiver issues “challenge” you? How do you manage these challenges in your work?

19. Internal Caregiver Circumstances

20. Impact of Care Receiver Stage of Illness

21. Exercise In small groups, share your experiences with caregivers in each of stage (using the previous slide). What did you see as the biggest obstacles? How did the caregiver succeed in negotiating these challenges?

22. Theories to Consider in Working with Caregivers • Caregiver Identity Change Theory (TCARE®) • Stress-Process Model • Strengths-Based Approach

23. The Caregiving Journey Is a Systematic Change Process • Change inactivities • Change inrelationship with care receiver • Change inidentityof caregiver • Cite: http://www4.uwm.edu/tcare/about.cfm

24. Five Phases of Caregiving Example of a spouse caregiver

25. Caregivers Experience Distress • When behavior doesn’t match personal rules • “It’s not what you are doing - It’s how you feel about it

26. Discussion Describe your experience using TCARE® (what lessons have you/client learned, successes, obstacles)

27. Pearlin’s Stress Process Model Caregiving Context Sociodemographics History of Care Secondary Stressors: Role Strain Secondary Stressors: Intrapsychic Strains Primary Stressors Outcomes Objective Stressors: Cognitive Status, ADLs Behavioral Changes Mastery Self-esteem Loss of Self Competence Gain Well-being Health Yielding of Role Family Conflict Job-care Conflict Economic Problems Subjective Stressors: Overload Loss of Relationship Stress Appraisals Resources: Coping Social support National Center on Caregiving at Family Caregiver Alliance Cite: Pearlin et al., 1990 Aneshensel et al., 1995

28. Strength’s Based Approach • Caregiver is the “expert of their situation” • Mobilizes caregiver’s talents, knowledge, capacities, and resources • Perceives individuals as possessing the capability to problem-solve, cope, and thrive

29. Discussion How have you used either of these theories in your work?

30. Components of the Basic Caregiver Consultant Curriculum

31. “FAMILY” CONTEXT Purpose To understand how the intersection of needing care due to illness, disease, etc. impacts the caregiver, elder and the extended family. To see how family complexities can be viewed as both an asset and a challenge, and to talk about building upon family strengths to produce support and positive change.

32. Learning Objectives • Revisit the definition of “family” • Review different styles of caregiving families • Become more familiar with family systems theory • Discuss possible conflicts and barriers to effective family care

34. Discussion Which of the caregiving styles have you seen in your work? What has been the most challenging?

35. Unraveling the Family Component • Family can greatly impact primary caregiver • Family Systems Theory • Caregiver Coaching (Advanced Skills Training) provides further education on facilitating formal family meetings • Important to be aware of these variables

36. Family Systems Theory “The whole is greater than the sum of its parts” • Systems are composed of subsystems • Each member of the system has a “role” • Look at the system’s structure (rules) and tasks • Maintaining same patterns create equilibrium

37. Family Systems Theory Basic Concepts http://family.jrank.org/pages/597/Family-Systems-Theory-Basic-Concepts-Propositions.html

38. BALANCE IN FAMILY SYSTEMS

39. Exercise Describe your approach in working with a family that may not be in equilibrium?

40. Conflicts Among Caregivers May occur when families differ about: • What “caring” means and what the limits of caring “should be” • Actions or attitudes towards the family member needing care • Seriousness of the illness, disease or impairment • Whether a primary caregiver is appreciated Conflict also occurs when: • One caregiver is more competent and/or has more time • A family member isn’t able to look at the reality of the situation or use their abilities to help

41. Barriers to Effective Care

42. Cultural Influences Did you know? • Minnesota has the largest Somali population in the US • Minnesota’s Hmong population is second only to California, and St. Paul is home to the largest urban population of Hmong in the world • The numbers of African American, Asian, and Hispanic/Latino Minnesotans are expected to more than double over the next 30 years while the number of white Minnesotans is projected to fall • The continued aging of the baby boom population will produce a significant increase in the number of people ages 55-69. By 2035, 22 percent of the population will be age 65 or older • Death rates for Black Americans are more than one and a half times higher than whites in most age groups Cite: http://www.culturecareconnection.org/matters/index.html

43. Understanding Other Cultures “Cultural competence is having the capacity to function effectively within the context of the cultural beliefs, behaviors, and needs of consumers and their communities (Office of Minority Health).” Cite: http://www.culturecareconnection.org/

44. Tools for Cultural Competence • Family/Caregiver • MN Dept of Health http://www.health.state.mn.us/divs/idepc/refugee/topics/cultcomp.html • Stratis Health-website http://www.culturecareconnection.org/resources/tools/index.html • Council of National Psychological Associations for the Advancement of Ethnic Minority Interests http://www.apa.org/pi/oema/resources/brochures/treatment-minority.pdf

45. Somali Social Structure: • Father is wage-earner and primary decision-maker • Family lives in multi-generational household • Men/women do not touch members of the opposite sex outside family • Islam as religion-women cover bodies, including hair Medical Care: • Health prevention through prayer and living through Islam Death and Dying: • It is uncaring to tell others (or be told) that the person is dying

46. Hmong Social Structure: • 18 clans determined by ancestral lineage. Do not call each other by first name • Have large extended families and the clan leaders are usually the key decision-makers Medical Care: • Tend to have an increase in many chronic health issues • Generally do not practice preventative health • View illness from holistic approach-combination of spirit and body • May/may not accept western medicine as treatment or combine eastern practice with healing Death and Dying: • Life is a continuous journey. Death is phase to pass from this existence to next

47. Black American Social Structure: • Often matriarchal • Families include “non family members” • More unmarried women than men • Older generation tends to be conservative in favor of traditional gender roles • Family has taken care of elders rather than placement Medical Care: • Older adults may be suspicious of health professionals • Believe their health is personal and God’s will Death and Dying: • Family should be informed of impending death • Cremation generally avoided and organ donation may be viewed as desecration of body

48. Hispanic/Latino Social Structure: • Traditional families include extended family • Children are highly valued and elders are respected/cared for Medical Care: • High chronic health concerns • May use both western medicine and consult folk healers/spiritualists Death and Dying: • Religious beliefs influence perception • Influence of Roman Catholic church • Elderly may wish to die at home-the spirit may become lost in hospital

49. American Indian Social Structure: • Family includes: immediate, extended family, as well as community and tribal members. • Women are traditional caregivers • Children are expected to respect and care for elders Medical Care: • Limited access or no access to health care services • Health is related to spirituality. Sickness may be viewed as a result of disharmony between sources of life • Patient may seek treatment from local clinic and from medicine man Death and Dying: • Immediate and extended family should be informed • Family Centered approach is advised • Entire family may be involved in decision-making • Need for signed forms may be an obstacle

50. Exercise Using this very limited information, discuss how your role may be perceived by the assigned culture. How would you proceed with beginning your work as a caregiver consultant?