OKLAHOMA ASSOCIATION OF HOMES AND SERVICES FOR THE AGING ANNUAL MEETING MARCH 8, 2011

1. OKLAHOMA ASSOCIATION OF HOMES AND SERVICES FOR THE AGING ANNUAL MEETING MARCH 8, 2011 “CELEBRATE AGE…. EXPAND THE POSSIBILITIES”

2. FOSTERING PARTICIPANT AND FAMILY RELATIONS Rita L. Spak MS, CTRS, ACC, CDP www.spakconsulting.com

3. IMPORTANCE • Regulatory Compliance • Marketing of Your Facility • Efficient Use of Staff • Benefits to resident

4. HISTORIC BARRIERS • Measuring Quality of Life/Satisfaction • Community care measures that account for preferences, caregivers, and inadequate care access • Measures that account for care continuity and coordination • Addressing cultural and individual preferences • Focus of Quality of Care

5. PARTICIPANT SURVEY • How many of you have placed a parent or loved one in a facility? • How many of you were satisfied with the provided care? • How many of you were dissatisfied with the provided care? • Reasons

6. OBRA • SEC.483.15 QUALITY OF LIFE • A facility must care for its residents in a manner and in an environment that promotes maintenance or enhancement of each resident’s quality of life. • PARTICIPATE IN RESIDENT AND FAMILY GROUPS

7. FAMILY GROUPS • When a family group exists, the facility must listen to the views and act upon the grievances and recommendations of families concerning proposed policy and operational decisions affecting resident care and life in the facility.

8. JOINT COMMISSION • Family satisfaction • Family complaints • Provision of Care, Treatment and Services

9. Standard PC.6.10 Residents must be given sufficient information to make decisions and to take responsibility for self-management activities related to their needs. Residents and as appropriate, THEIR FAMILIES are educated to improve individual outcomes by promoting healthy behavior and appropriately involving residents in their care.

10. JOINT COMMISSION • 7. Family Complaints • 24/7 visiting hours • Interact with members of the community both inside and outside the facility

11. NEW SURVEY PROCESS • Utilize MDS data • Resident interviews • Family interviews • Record reviews

12. BE PROACTIVE • Family’s role remains critical to resident’s well-being • Educate them with important information

13. EDUCATE FAMILY • Care planning • Ways to keep family involved • Become partners with staff and other providers • Monitor their loved one’s care • Help their loved one stay emotionally healthy

14. FAMILY GROUPS • Family council • Grief counseling • Bereavement counseling • Support groups • Family input into care plan conference • Family night • Volunteer group or auxiliary

15. PARTICIPANT SATISFACTION • Abt study • Participant surveys • Participant counsels • Choices in your facility • Handling complaints

16. FAMILY COMMUNICATION IN LTC • The onus is on the facility to prove to the family that they have the best interest on the loved one in mind. • The decision making authority of residents and their families has increased • Informed consents are frequently required for therapies, treatments, and overall care.

17. HOW DOES YOUR FACILITY VIEW FAMILY INVOLVEMENT?? • It is the responsibility of the staff and administration of the LTC facilities to support families through the difficult process of admission and in dealing with new roles after the admission. • In the majority of instances, residents come from acute care hospitals and family members most often do not get the whole picture of the status of the resident

18. HOW DOES YOUR FACILITY VIEW FAMILY INVOLVEMENT?? • More than 50% of both spousal and non-spousal caregivers report participating in the physical care of the resident • Managing money, arranging medical care and transportation, and providing social support are tasks families regularly perform

19. HOW DOES YOUR FACILITY VIEW FAMILY INVOLVEMENT?? • DIFFICULTY ARISES BY THE WAY FAMILY INVOLVEMENT IS VIEWED BY ADMINISTRATION AND STAFF. • THE KEY IS WHETHER THE FAMILY IS VIEWED AS INTEGRAL TO THE LTC SYSTEM OR PERIPHERAL

20. HOW DOES YOUR FACILITY VIEW FAMILY INVOLVEMENT?? • WILL RESIDENT FAMILIES HAVE SERVICES EXTENDED TO THEM? • WILL THE FAMILIES BE INCLUDED IN ACTIVITIES AND EVENTS? • ARE RULES AND REGULATIONS OF THE FACILITY MADE WITH THE FAMILY’S WELL-BEING IN MIND? • IS COMMUNITY SUPPORT OF YOUR FACILITY IMPORTANT?

21. HOW DOES YOUR FACILITY VIEW FAMILY INVOLVEMENT?? • RESEARCH SHOWS THAT FAMILY MEMBERS CITED MORE PROBLEMS IN CARE, INTERACTIONS WITH STAFF, AND NURSING HOME CHARACTERISTICS--ENVIRONMENT, STAFFING, WHEN FACILITIES HAD LOW FAMILY ORIENTATION.

22. HOW DOES YOUR FACILITY VIEW FAMILY INVOLVEMENT?? • When the facility was ranked high in family orientation, family members were more likely to mention the care was good or excellent and staff cooperated in problem-solving

23. FAMILY EXPECTATIONS • Often unrealistic if they do not have a comprehensive understanding of the geriatric syndromes that have been at work and which had led to placement. • Unrealistic expectations of the intensity of one-to-one care that can be provided by the facility staff.

24. ENCOURAGE FAMILY TO: • Visit or call relative often • Plan a day trip with the resident outside the facility • Personalize the resident’s space with photos, pictures and other memorabilia • Bring a favorite food that the resident enjoys

25. PRIOR TO ADMISSION • MIRROR THEIR REALITY What are the losses to the resident? What are the losses to the family? What are the physical implications? What are the emotional implications? Influencing the relationship may be: distance from family, availability of family, gender of family, prior relationship between the family member and older adult and the functional ability of resident

26. SYMPTOMS OF DEPRESSION AND ANXIETY FOR HOME CAREGIVERS • STRESS • GUILT • MY PARENTS WERE NEVER THERE FOR ME • PHYSICAL AND EMOTIONAL IMPLICATIONS • BAD PUBLICITY

27. FACILITY ORIENTATION • Meeting with department heads • Letter realizing their importance as family members • Family newsletter • Assess family • What can they contribute to facility Staff training on family involvement Designated contact person for family

28. OUR RESIDENTS SHOULD NOT BE ISOLATED IN OUR FACILITIES. THEY SHOULD STILL FUNCTION WITHIN THE COMMUNITY AND WITH THEIR FAMILIES

29. YOUR PERSONNEL • A common barrier to improving Quality of Life

30. ADMINISTRATION • Families need to be aware of the specific policies (restraints, dietary) • Facilities should not accept residents if their staff is not capable of providing appropriate care for them • If planning occurs prior the the admission, an enormous amount of time and effort can be saved by avoiding frustration from the resident’s families

31. NURSING • Relay daily updates about residents to their families • Deliver info in a professional and compassionate manner • Often confusion about grooming, bathing • Report medication changes and test results

32. REHAB PROFESSIONALS • Be realistic and do not fuel unrealistic family expectations • Do not delay in reporting lack of progression or worsening of functional status • Do not say that they are being “discharged” from therapy

33. SOCIAL SERVICES • Don’t misunderstand family dynamics • Explain code status • Review DNRs • Explore spiritual needs

34. ACTIVITY SERVICES • Handle resident council complaints promptly • Get family permission for photographs • Get family permission for outings • Resident autobiographies • Shadow boxes • Encourage families to bring in pets, plants and reading materials

35. DIETARY • Handle food complaints promptly • Ensure family is aware that they can bring in food items for resident

36. STATE OF THE ART PROGRAMS FOR FAMILY • Simple Pleasures • Family Baskets • Bedside Family Members • Discharge Phone Calls

37. STAGES OF GRIEF • Denial • Over-involvement • Anger • Guilt or Shame • Acceptance

38. FAMILY ANXIETY • Despite 80-90% of the family caregivers reporting adequate satisfaction with the care in the placement facility, their depression and anxiety levels, which were already high as a community caregiver, did NOT improve following placement • The use of anti-anxiety medications among family members actually increased from 14.6% to 19% following placement • 50% of family members were at risk for clinical depression following placement

39. WHILE THEY ARE AT THE FACILITY • ADVOCATE Family caregivers need to be involved as advisors Caregivers should be acknowledged as the experts about the resident, if not their illness Training staff to sensitivity policies and practices can reduce caregiver stress and facilitate patient adjustment. Administration support for programs is essential Instill empowerment by providing families with information, skills and services

40. WHILE THEY ARE AT THE FACILITY • INCLUDE Average family will visit between 6 to 16 times per month Offer services specifically for family members Offer social activities for the staff, family and residents to promote positive relationship Offer volunteer opportunities to the family

41. FAMILIES HELP BY: • Respecting the resident’s individuality and uniqueness • Encouraging personal interaction with others • Promoting access to the larger world through television, radio or newspapers • Encouraging participation in games or group activities • Encouraging expression of spiritual beliefs and practicies such as praying, reading the Bible, or listening to spiritual music

42. FAMILY CAREGIVER DEMOGRAPHICS • 68% are female • Average age of the caregiver is 58 • Average education level is 14 years of schooling • 60% of caregivers work part-time or full-time • 36% of caregivers are daughters • 78% of caregivers drive themselves to the facility • 70% live within 10 miles

43. FAMILY VISITS • 50% of spousal caregivers visit daily • 45% of spousal caregivers visit weekly • 25% of non-spousal caregivers visit daily • 66% of non-spousal caregivers visit weekly • The vast majority of caregivers visit their relatives on a regular basis

44. FAMILY VISITS • Approximately 85 to 98% of residents receive visits • Residents receive an average of two to three visits per week • The average visit last from one to two hours • 40% of the visits occur in the afternoon

45. WHILE THEY ARE AT THE FACILITY • INVOLVE Offer support and educational workshops Facilities can use the Rite Aid Giving Care For Parents site at www.riteaid.com as a great educational tool in learning more about the clinical, legal and financial concerns. The educational videos are free.

46. RIGHTS OF FAMILY MEMBERS • Participate in assessments and care planning • Be informed of residents’ rights • Be notified within 24 hours of an accident resulting in injury, a significant change in the resident’s condition, a need to alter treatment significantly, or a decision to transfer the resident

47. FAMILY RIGHTS continued • Immediate access to visit the resident at any time, subject, of course to the resident’s consent • Be notified promptly if the resident is going to be moved to another room or if there is a change of roommate • Participate in a family council and make recommendations and present grievances without retaliation

48. IDENTIFY AND BUILD ON COMMUNICATION BEHAVIOR STYLES • WITH WHAT FAMILY DO YOUR FIND IT DIFFICULT TO COMMUNICATE? • DESCRIBE THE BEHAVIORS THAT CAUSE PROBLEMS FOR YOUR? • NOTE HOW YOU GENERALLY RESPOND TO THESE PROBLEMATIC BEHAVIORS • NOW LOOK AT YOURSELF. • IDENTIFY AT LEAST ONE BEHAVIOR THAT MAY NEED MODIFYING.

49. FAMILY EDUCATION • Facilities do not typically promote family education. • All staff must understand the intense level of stress experienced by families at the time of placement • Knowledge of the long-term care systems and understanding the nature of the common geriatric syndromes can aid families during this difficult period

50. COMMUNICATION SKILLS • Body Language • Tone of Voice • Actual Words