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INFORMAL CAREGIVERS

INFORMAL CAREGIVERS. TINA BROWN REID, EDD, RN SALISBURY UNIVERSITY DEPARTMENT OF NURSING. Overview. Caregiver Population Demographics Statistics Characteristics Roles & Responsibilities Issues Caregivers Face Impact & Needs Significance Goals Benefits Conclusion. Opening….

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INFORMAL CAREGIVERS

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  1. INFORMAL CAREGIVERS TINA BROWN REID, EDD, RN SALISBURY UNIVERSITY DEPARTMENT OF NURSING

  2. Overview • Caregiver Population • Demographics • Statistics • Characteristics • Roles & Responsibilities • Issues Caregivers Face • Impact & Needs • Significance • Goals • Benefits • Conclusion

  3. Opening… • In pairs discussion how long you have been in your current role. • Give a word/phrase to sum up your experience in working with individuals/families with chronic illnesses.

  4. Demographics of Maryland • AGING POPULATION • >1million older adults • 1.7 million (2030) • Md ranks 20th (U.S. census bureau) • >85 fastest growing population • CAREGIVERS • 547,647 – 600,000 • 587 Million Caregiving hours • $5,819 - 6,300 million

  5. Statistics • Aging Population • U.S. Caregivers-65.7 million • >65 million people (29% of the U.S. population) provide care for a chronically ill, disabled or aged family member or friend per year • 90% of care of pt. w/ chronic illness – delivered by family caregivers • 20 hours per weekis the average number of hours family caregivers spend caring for their loved ones • 13%of family caregivers are providing 40 hours of care a week or more • Current average >50hrs per week • MD Caregivers • Costs of Caregiving: The value of the services family caregivers provide for "free," when caring for older adults, is estimated to be $375 billion a year. That is almost twice as much as is actually spent on homecare and nursing home services combined ($158 billion)

  6. Characteristics • Women (66%) • Average age 48 • 36% care for a parent   • 7 out of 10 care for loved ones > 50 years old • 1 out of 3 take care of 2 or more

  7. Roles & Responsibilities • Companionship • Housekeeping • Personal Care • Bathing • Positioning • Toileting • Safety • Transferring • Transportation • Technical Tasks • Ostomy bags, caring for feeding tubes, administering injections

  8. Issues Caregivers Face… • Burdens related to care giving • Stress (physiological/psychological), depression, anxiety, poor physical & emotional health • Decreased immune function • Isolation • Information needs • Economic implications of caring

  9. Impact • 23% of family caregivers caring for loved ones for 5 years or more report their health is fair or poor • Stress of family caregiving for persons with dementia has been shown to impact a person's immune system for up to three years after their caregiving ends thus increasing their chances of developing a chronic illness themselves • Nearly three quarters (72%) of family caregivers report not going to the doctor as often as they should and 55% say they skip doctor appointments for themselves • 63% of caregivers report having poor eating habits than non-caregivers and 58% indicate worse exercise habits than before caregiving responsibilities • 20% of employed female caregivers over 50 years old report symptoms of depression compared to 8% of their non-caregiving peers • 40% to 70% of family caregivers have clinically significant symptoms of depression with approximately a quarter to half of these caregivers meet the diagnostic criteria for major depression • More than 1 in 10 (11%) of family caregivers report that caregiving has caused their physical health to deteriorate

  10. Needs of Caregivers • 22% of family caregivers - need help communicating with physicians • Lack of opportunity to prepare for & discuss their ongoing role • Lack of sensitive communication from providers • Focus group research - family caregivers do not recognize that public policy has a direct impact on their day-to-day lives • Support the functioning* • Financial support • Transportation assistance • Improved access to health care • Increased public awareness • Dedicated community programs • Increased services in rural areas

  11. Significance of Caregivers • Plays a vital role providing social, physical & psychological support over a period of time • Economic Value • Value of family caregivers' services is $306 billion annually • Caregiver Services • $375 billion (2007) • $450 billion (2009)

  12. What Are Our Goals… • Improve the quality of services provided to family caregivers of older adults • Provide a basis for the development of continuing education materials and programs related to family caregiving • Advocate for family caregivers’ right to self-determination, confidentiality, access to supportive services, and appropriate inclusion in decision-making affecting older adults • Encourage participation in the development and refinement of public policy, at the local, state, and federal levels, to support family caregivers of older adults • Empower older adults to stay active & healthy • Enable older adults to remain in their homes with high quality of life for as long as possible through the provision of home and community-based services, including supports for family caregivers • “Improve the health, function, and quality of life older adults” (HP 2020 objectives)

  13. How Can We Help? • Identify ‘at-risk’ caregivers • Services • Community Resources • Adult Day Services • Respite Care • Financial services • Support groups • Training/Education • Coping strategies • Stress reduction techniques • Coaching & Counseling • Social support mechanisms • Telephone helplines • Web-based video conference

  14. Benefits of Supporting Caregivers • Increases knowledge & skill set • Decreases stress & burden • Reduces depression • Increases resilience & coping • Improves continuity of care • Helps prevent crisis situations • Strengthens families • Protects health of caregiver & care receiver • Cost effective

  15. Implications for Practice • Early education from professionals • Managing falls & consequences of falls • Home-care skill training • Relationship-building skills • Improved coordination of services • Support from family & friends • Good quality of care • Use of respite care • Opportunities for self-care

  16. Conclusion • Emotional, social & financial burden – immense • Difficulty accessing information & financial advice • Lack of awareness • Importance of good quality of care • Awareness of caregiver burden factors is important to the appropriate total management of people with chronic diseases • Social support is an integral component of health & quality of life

  17. Discussion • How do we preserve, improve, and protect the caregivers? • What do you think was the most important point? • What topic discussed surprised you the most? • Write down a key word or phrase that you would like to communicate back to CCRC in the development of future services.

  18. Caregiving… • caring about another person represents • life'sgreatest value

  19. QUESTIONS?

  20. REFERENCES • AARP Public Policy Institute. (2012). Valuing the Invaluable: 2011 Update, The Economic Value of Family Caregiving. • Aoun et al. (2006). The challenges and unmet needs of people with neurodegenerative conditions and their carers. Journal for Community Nurses 11(1): 17-20. • Berglund, A., & Johansson, I. (2013). Family caregivers’ daily life caring for a spouse and utilizing respite care in the community. Vard/Norden107(33) 30-34. • Caregiver.org • Center on Aging Society. (2005). How Do Family Caregivers Fare? A Closer Look at their Experiences. • Cifu et al. (2006). Caregiver distress in parkinsonism. Journal of Rehabilitation Research & Development 43(4): 499-508. • Evans, D. (013). The provision of health and social care services for older people by respite providers. Contemporary Nurse 45(2): 255-263. • Hempel et al. (2008). Psychosocial interventions for non-professional carers of people with Parkinson’s disease: a systematic review. Journal of Advanced Nursing, 7: 214-228 • Kiecolt Glaser & Glaser. (2003). “Chronic stress and age-related increases in the proinflammatory cytokine IL-6.“ Proceedings of the National Academy of Sciences. • Lake Snell Perry & Associates (2001). A Report on Formative Focus Groups, conducted for the Family Caregivers Self-Awareness and Empowerment Project, a joint program of the National Family Caregivers Association and the National Alliance for Caregiving. • Mahoney, D. (2003). Vigilance evolution and definition for caregivers of family members with Alzheimer’s disease. Journal of Gerontological Nursing, 29(8): 24-30. • McLaughlin et al. (2010). Living and coping with Parkinson’s disease: Perceptions of informal carers.Palliative Medicine 25(2) 177-182. • National Alliance for Caregiving and Evercare. (2009).Evercare Survey of the Economic Downturn and Its Impact on Family Caregiving • National Alliance for Caregiving and MetLife Mature Market Institute. (2010). MetLife Study of Working Caregivers and Employer Health Costs. • National Alliance for Caregiving in collaboration with AARP. (2009). Caregiving in the United States. • National Alliance for Caregiving and Evercare. (2006). Evercare Study of Caregivers in Decline: A Close-Up Look at Health Risks of Caring for a Loved One. • National Alliance for Caregiving and AARP. (2004). Caregiving in the U.S. • National Institute of Nursing Research (2009). • North Yorkshire alliance research and development unit & school of health professions and rehabilitation services (2004). Falling in Parkinson’s disease: the impact on informal caregivers. Disability and rehabilitation 26(23): 1360-1366 • Pressler et al. (2009). Family caregiver outcomes in heart failure. American Journal of Critical Care 18(2): 149-159. • The National Alliance for Caregiving and AARP. (2012). Caregiving in the U.S. National Alliance for Caregiving. Washington, DC. Retrieved from caregiver.org on March 27, 2014. • Wilken, C. & Isaacson, M. (2005). Educating caregivers of geriatric rehabilitation consumers. Topics in Geriatric Rehabilitation, 21(4): 263-274. • Zarit, S. (2006). Assessment of Family Caregivers: A Research Perspective

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