Perspectives on African American Family Caregiver Needs

1. Perspectives on African American Family Caregiver Needs Maryam M. Robinson, MPH Caregiver Opportunities for Optimizing Lifestyles (COOL-AD) Emory University School of Nursing Kenneth Hepburn, PhD Monica Parker, MD Clinton Dye, PhD Leiema Hunt Christina Mason http://www.everydayhealth.com/health-report/alzheimers-caregiving/role-of-caregiver.aspx

2. “Minoritiesface disproportionate burdens of many diseases, including some that may contribute to Alzheimer's.As minority populations get older, they will see a dramatic rise in their risk of Alzheimer’s disease.This will overwhelm their families and communities unless we take action now.”- James Jackson, Ph.D. Alzheimer’s Association Medical & Scientific Advisory Council

3. Outline • Family Caregiving in the US: Who are the caregivers and what do they do? • Health Statistics of Family Caregivers • Identifying Health Disparities • Identifying the Needs of African American Caregivers • Current Efforts and Future Directions

4. Family Caregiving in the Us http://healthyblackmen.org/2012/06/01/urgent-plan-fight-alzheimers-disease/

5. Family Caregiving in the US (1) • Over 65 million people (29% of the US population) provide care for a chronically ill or disabled loved one • 66% of caregivers are women for all caregiving- 41% male for AD, 59% female for AD • Over 37% of caregivers also have grandchildren or children under 18 years of age living with them • 7 out of 10 caregivers are caring for loved ones over 50 years of age • 65% of AD caregivers help with one or more Activity of Daily Living (ADL) (e.g.. getting out of bed, dressing, toileting, or feeding) (2)

6. (3)

7. Family Caregiving in the us (contd) (1) • 23% AD caregivers provide “constant care” (40hrs or more a week) (2) • 74% of AD caregivers report unmet needs (2) • 78% of adults in the community that need long-term care depend on a loved one as their sole source of help • 47% of family caregivers say that increased caregiving expenses causes them to use up all or most of their savings ($5,531/year on average) • Family Caregivers are the foundation of long-term care

8. Health Statistics and Family Caregiving

9. Family Caregiver Health • Family caregivers report higher rates of stress, depression, and financial burden (1) • Current shortage of geriatric caregivers (4)-family caregivers fill a vital void in caring for elderly in the US

10. Health Statistics of Family Caregivers (1) • Stress from dementia caregiving impacts health for up to 3 years after caregiving ends- increased risk for chronic disease • Less exercise and worse eating habits has been reported • 20% of working female caregivers report depression versus 8% of non-caregivers • Stress from family caregiving can take as much as 10 years off a caregiver’s life • 23% of caregivers report fair or poor health

11. Value of caregiving (5)

12. Progression of the disease(5)

13. identifying health disparities • Older AA are twice as likely to develop AD as white counterparts (6) • AA more often not diagnosed (7) or diagnosed later- lack of access to adequate treatment • Issues of distrust within AA community and providers independently affect health factors (7)- lack of access to quality care • Primary care physicians don’t routinely check for Alzheimer’s (7) • AA historically underrepresented in cognitive research(6)

14. Impact of disease by race

15. Identifying the Needs of African American Family Caregivers

16. Data on Caregiver perspectives on needs • Data from focus group held with AA caregivers • Female caregivers who participated in Savvy Caregiver Program • Domains covered: • Value and worth of program • Family and Community Focus • Self-Care

17. Necessary support structures and improvements • Promote awareness & educate community (programs, fliers, TV, radio ads) • Need to defeat stigma, denial, and other negative attitudes • Targeted Groups: Church members, broader community, family, friends • Facilities: government funding, community outreach, convenience • Advertisement of current resources for self-care

18. Necessary support structures and improvements (CONTD) • Increased family support • Recognizing affects of disease, eliminating stigma, understanding everyone is a part of CG village • Emotional support groups, nearby within the community • Caregivers speak about support groups being too far away or not providing accommodations for loved ones • Facility accommodations for loved one • i.e. Movie theatres, churches

19. Current Efforts and Future Directions

20. Addressing health disparities: current research and community efforts • COOL-AD • Alzheimer’s Association: increasing community outreach and contact with minorities • Area Agency on Aging • County initiatives: Fulton County Starline, Atlanta Regional Commission • African American Community Outreach Program: NC, Bryan ADRC Duke University (est. 1995) • African American Alzheimer’s Awareness and Brain Health Initiative: NJ, Rutgers University

21. Future directions and next steps COOL-AD: • Data analysis on stress measures and reducing stress • Publications on reducing stress among AA caregivers • Finalization and distribution of caregiver curriculum for AA family dementia caregivers • Local support groups similar to book clubs on coping as an AA caregiver and strategies for caregiving

22. references 1. National Family Caregivers Association. “Caregiving Statistics”. www.nfcacares.org. Accessed 5/16/2012. 2. Alzheimer's Association. “Families Care: Alzheimer’s Caregiving in the United States. 2004 3. Partnership for Solutions. “Chronic Conditions: Making the Case for Ongoing Care.” Johns Hopkins University, Baltimore, MD. 2004 4. Hayashi, J. , Decherrie, L., Ratner, E., & Boling, P.A. (2009). Workforce Development in Geriatric Home Care. Clin Geriatr Med, 25, 109-120 5. Alzheimer’s Association. “Alzheimer’s Disease: Facts and Figures”. 2012 6. National Institute on Aging. “2010 Alzheimer’s Disease Progress Report”. 7. Department of Health and Human Services. Healthy People 2020 “Dementias, Including Alzheimer’s Disease” http://www.healthypeople.gov/2020/topicsobjectives2020/overview.aspx?topicid=7. Accessed 06/17/2012

23. Questions and Discussion