Family Carers of Persons with Heart Failure. Presented by: Rick Greene, IACO and Susan Campbell, WomenHeart Adelaide, Australia

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1 Family Carers of Persons with Heart Failure Presented by: Rick Greene, IACO and Susan Campbell, WomenHeart Adelaide, Australia

2 There are only four kinds of people in the world Those who have been caregivers Those who are currently caregivers Those who will be caregivers, and Those who will need caregivers Rosalynn Carter

3 IACO Members Across the Globe Over 15 Countries and Growing!

4 Goals of IACO Engage members to share and increase knowledge, expertise and experience. Act as a resource for carer organizations globally. Provide assistance to nations without carer infrastructure. Facilitate international advocacy to advance programs, policies and legislation that support caregiver. Increase awareness of the role and value of the Alliance.

5 International Study on Carers of Persons with Heart Failure Purpose of Study Funded by Novartis Pharmaceuticals Collaborators Research Findings Recommendations

6 HF Research Collaborators Australia Carers Australia Heart Support Australia United Kingdom Carers UK Pumping Marvelous Canada Carers Canada Heart & Stroke Foundation of Canada United States National Alliance for Caregiving WomenHeart

7 Age of Carer & Person with HF AGE OF CARER >74 years AGE OF PERSON W HF >74 years 6% 6% 4% 9% 5% 5% 22% 32% 49% 62%

8 Relationship to Person with HF 15% 1% 2% 9% 3% 46% Spouse/partner Child Parent/Grandparent Friend/Neighbor Sister/Brother Grandchild Missing 24%

9 Care Recipient s Co-morbidities 12% - no co-morbidities 25% - Diabetes 22% - Musculoskeletal problems, arthritis 20% - Depression 20% - Other 13% - Lung Disease 12% - Obesity 12% - Kidney Disease 12% - Anemia 11% - Stroke 9% - Alzheimer s or Dementia

10 What Tasks Do Carers Perform? 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Activities of Daily Living 38% 40% 40% 26% 25% 12% 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Instrumental Activities of Daily Living 73% 85% 88% 76% 52% 75%

11 Time Since Diagnosis of Heart Failure 18% 10% 22% 37% Less than 1 Year >2 years, but<5 years More than 5 Years Not sure

12 Carer s Self-Rated Health 3% 11% 23% 32% Poor Good Fair Very Good Excellent 31%

13 Employment Status of Carer Working Full Time Working Part Time Student Full Time Carer Retired Not Working 9% 30% 30% 15% 14% 2%

14 Impact of Caring on Employment 15% 11% 13% 41% Not at all Extremely Some Quite a bit A little 20%

15 Policy Change through Advocacy Advocacy for laws, policies, research and funding for programs can improve the lives of people with heart failure and their carers. Individually patients and carers can change their heart health; collectively, using a population based, public health approach can advance heart health for all. Through IACO we can share our experiences and materials to reach that goal.

16 Policy Recommendations Health Care Professionals Engage carers as essential members of the heart failure team and acknowledge their critical role in implementation of the treatment plan. Integrate a routine carer assessment and facilitate targeted support to prevent physical/psyco-social health decline. Support carers navigating the health care system and assist them to gain access to services.

17 Policy Recommendations Carers Be actively involved in decision-making & have a conversation with the health care team and your care recipient to understand your role. Be your own advocate and learn how to support your health and well-being. Learn what support you can access. Understand short, medium and long-tern care options and support persons with heart failure to comply with the treatment plan and lifestyle changes.

18 Policy Recommendations Governments & Decision Makers Examine the viability of a navigation/information system for carers to know about/access services. Develop & test user-friendly technology for carers Enhance data collection & research to inform the development of evidence-based policies and programs, particularly among vulnerable and underserved populations. Develop policies to reduce the financial burden of caregiving and protect the future income of carers. Implement incentives for employers to include support of caregivers in the workplace.

19 Policy Recommendations Non-Governmental Organizations Conduct campaigns to improve awareness and understanding of the impact of carers. Promote evidence-based tools for health and social providers to support carers. Better prepare carers through training efforts. Inform employers of options they can implement to support working carers. Provide flexible health/social supports for carers.

20 What Can Advocacy Groups Do? Provide education and support to patients and carers with heart disease Advocate for awareness and recognition of cardiovascular risk factors Encourage implementation of CVD prevention and screening with sex-specific CVD risk factor assessment Include a comprehensive reproductive history in women s permanent medical record. Encourage coordination of CVD care among specialists. Promote use of cardiac rehabilitation services and eliminate barriers to participation. Be the patient voice, advocating at every opportunity 20

21 Thank You! Rick Greene, MSW Executive Advisor