N4A Annual Conference Philadelphia July 14, The Role of the Family Caregiver and the Aging Network in the Chronic Care Model

Transcription

1 N4A Annual Conference Philadelphia July 14, 2015 The Role of the Family Caregiver and the Aging Network in the Chronic Care Model

2 Session Overview Introduction of Panel Importance of Caregiving from the Philanthropic Perspective Importance of Caregiving from the Healthcare Perspective Research and Evidence-based Programs for Caregivers that make caregivers part of the chronic care team

3 THE IMPORTANCE OF CAREGIVING FROM A PHILANTHROPIC PERSPECTIVE Nora O Brien-Suric Senior Program Officer John A Hartford Foundation

4 THE IMPORTANCE OF CAREGIVING FROM A PHILANTHROPIC PERSPECTIVE Michael Marcus Director Older A Harry and Jeanette Weinberg Foundation

5 FAMILY CAREGIVERS HEALTHCARE S INVISIBLE WORKFORCE 5

6 GERONTOLOGIST, 1997 changes in the patterns of illness and in the delivery of health care services are placing increasing burdens on patients, their families, and their caregivers. Each group must assume greater responsibility for the ongoing management of chronic diseases as well as the episodic management of acute illnesses. 6

7 All need more information about chronic conditions and medical care, and they need to be more actively involved in various health-related decisions and actions. Hale, Bennett, Oslos, Cochran & Burton 7

8 THE INVISIBLE WORKFORCE the entire health care workforce, including both formal and informal caregivers, need to have the requisite data, knowledge, and tools to provide high quality care.

9 THE INVISIBLE WORKFORCE More than 34 million Americans are family caregivers for adults age 50 and older with chronic and acute illnesses. Caregivers are usually relatives, but the term family caregiver also includes partners, close friends, and neighbors. 9

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12 FAMILY MATTERS IN HEALTH CARE DELIVERY This Viewpoint suggests that more explicit acknowledgement and support of family in health care processes could advance the triple aim of better health, higher-quality care, and reduced costs for patients who are vulnerable and whose care is most costly. Jennifer Wolff, PhD, JAMA

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14 MEDICAL/NURSING TASKS Almost half (46%) of family caregivers performed medical/nursing tasks for care recipients with multiple chronic physical and cognitive conditions. 14

15 RECOMMENDATIONS Individual health care professionals must fundamentally reassess and restructure the way they interact with family caregivers in daily practice. 15

16 RECOMMENDATIONS Health care organizations must support health care professionals in their efforts through adequate resources and strong leadership. 16

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18 CAREGIVER CHARACTERISTICS 60% female - 40% male 24% have provided care for 5 or more years 26% have provided care for 1 4 years 18

19 CAREGIVER ACTIVITIES 66% - monitoring health of recipient 63% - communicating with recipient s health care professionals 50% - advocating with providers, services, agencies 19

20 CAREGIVER ACTIVITIES 57% assist with medical/nursing tasks 42% - without any preparation 14% - with training 41% - do not do these tasks 3% - unsure 20

21 EXPERIENCES WITH HEALTH CARE PROVIDERS 32% report that a health care provider, such as a doctor, nurse or social worker, has asked about what was needed to care for their recipient 16% report a health care provider has asked what they need to take care of themselves 21

22 EMOTIONAL STRESS 38% report their caregiving situation to be highly stressful 53% - caring for someone with mental health problems 50% - caring for someone with Alzheimer s disease/dementia 45% - caring for someone with a long-term physical condition 22

23 INFORMATION NEEDS 84% could use more information or help on caregiver topics 42% - keeping loved one safe at home 42% - managing their own stress 23

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30 BRINGING TOGETHER PHILANTHROPY, HEALTHCARE, AND THE AGING NETWORK Carol Zernial, MA Executive Director WellMed Charitable Foundation

31 Medical or Health Care Home The medical home, in reality, is the home of the person with chronic care needs cared for by a family caregiver L Feinberg, SC Reinhard, A Houser, and R. Choula, Valuing the Invaluable, 2011 Update the Growing contributions and costs of Family Caregiving, AARP Public Policy Institute INSIGHT on the Issues (Washington, DC: AARP, 2011

32 Care Transitions High levels of caregiver burden and/or depression are associated with problematic discharges. Risk of re-hospitalizations occurs when the family caregiver feels unprepared for care in the home. Between 40 and 50 percent of readmissions are linked to social problems and lack of community resources.

33 Chronic Care Model for Caregivers caregivers

34 Positive Interventions Involving family caregivers in discharge planning during care transitions may improve quality of care and lessen risk of readmission. Goals: Understand instructions for medication and self care Recognize symptoms that signify complications Make and keep follow-up appointments Engaged and activated caregivers as members of the health care team

35 Cutting Edge Approaches in Response to Emerging Caregiver Needs

36 What is Tele-Learning? One-hour sessions on the telephone 40 minute expert presentation and 20 minutes of caregiver interaction Can be offered: In any language At any time To any caregiver in the country who has access to a telephone Don t have to get dressed No transportation required No respite needed

37 Caregiver Teleconnection Reach Since 2010: Provided over 275 telephone learning sessions. Reached over 4,321 caregivers in Texas and across the country Statewide grant for Texas from the Texas Department of Aging and Disability Services 2014 Partnership with Johns Hopkins Bayview Medical Center and Harry & Jeanette Weinberg Foundation

38 Evidence-based Programs Programs for Caregivers The Stressbusting Program for Family Caregivers

39 Stress-Busting Program for Family Caregivers Evidenced-based program at the highest level of criteria

40 Stress-Busting Program for Family Caregivers Multi-component program in a support group setting 9 weeks 1 ½ hours/week Led by 2 group facilitators

41 Stress-Busting Program Master Trainers Training (2 days) Responsibilities Recruit caregiver participants Co-facilitate groups Train group facilitators (lay leaders)

42 Stress-Busting Program Group (Lay) Facilitators Training (2 days) Responsibilities Co-facilitate groups Assist in recruiting caregiver participants

43 Stress All Caregivers 30 * Baseline End of Intervention 15 10

44 Depression All Caregivers * Baseline 15 End of Intervention 10

45 Caregiver Burden - Subjective All Caregivers * Baseline End of Intervention 25 20

46 Stress-Busting Program Summary of Results Decreases in Stress Depression Caregiver burden Improvements in Quality of life Sense of control

47 Stress-Busting Program Why is it Effective? Cornerstones Facilitators Nurturing of caregivers Program content

48 Successful Adoption in 8 States SBP has been adopted by organizations in Florida, Alabama, Arkansas, Oklahoma, Kentucky, California, South Dakota, Oregon in addition to Texas The Texas Department of Aging and Disability Services expanded the program statewide through a Lifespan Respite Grant.

49 Value to the Aging Network It is an established, successful evidenced-based program that addresses caregivers with the highest needs and the care recipients with the highest costs

50 Session 1 Getting Started Introductions to the program Hearing the caregivers stories and building support

51 Stress Management Technique Relaxation Breathing A simple and most effective way to stop the stress response: Relaxation (abdominal) breathing

52 Session 2 Stress: Effects on Mind, Body, and Spirit General concepts of stress Negative effects on physical and emotional health

53 Principle Underlying Stress Management You may not be able to change the stressors in your life But you can choose how you react or respond to them

54 Stress Management Technique A state of Meditation Thoughtless awareness Profound, deep peace that occurs when the mind is calm and silent, yet completely alert

55 Session 3 Caregiver Stress and Relaxation Stress related to being a caregiver Creating a relaxation environment

56 Stress Management Technique Imagery Use of one s mind to generate images that have a calming effect on the body

57 Session 4 Challenging Behaviors of People with Dementia Common behavioral problems of patient with dementia and ways to deal with them

58 Stress Management Technique Journaling Allows an individual to express self in writing Ask caregivers to write about the positive aspects of caregiving

59 Session 5 Grief, Loss, and Depression Losses related to Alzheimer s disease Ongoing grief Resulting depression

60 Stress Management Technique Massage Works well for relaxation of caregiver Hand massage also helps dementia patients who are agitated

61 Session 6 Coping with Stress Changing family relationships Using coping strategies Humor

62 Stress Management Technique Art Allows a person to nonverbally express and communicate feelings, emotions, and thoughts

63 Session 7 Positive Thinking For some caregivers just thinking about the positive aspects can reframe their role and help it seem more manageable

64 Stress Management Technique Aromatherapy Use of essential oils for the beneficial effects on the mind, body, and spirit

65 Session 8 Taking Care of Yourself: Healthy Living Caregivers frequently devote themselves totally to their loved one In the process, neglect their own needs

66 Session 8 Taking Care of Yourself: Healthy Living Exercise Nutrition Sleep Hobbies

67 Stress Management Technique Music Music can help achieve a relaxed state

68 Session 9 Choosing a Path of Wellness Putting it all together Setting goals

69 Adaptations of Dementia SBP General -SBP for family caregivers of people with chronic disease Spanish-SBP for Hispanic Spanishspeaking family caregivers of people with dementia 69

70 Program Implementation Master Training is available in San Antonio, TX or off-site with at least 8 participants Visit for more information

71 Free monthly e-newsletter with resources for caregivers Distributed to over 7,000 caregivers nationwide Call Toll-Free to be added to the list

72 Caregiver SOS On Air National podcast for family caregivers available at Guests: Harvard Medical School Mayo Clinic United Hospital Fund Adler Aphasia Center Book Authors Caregivers

73 Contact Information Carol Zernial