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Family Caregiving Summit @ NYAM April 30, 2014

Family Caregiving Summit @ NYAM April 30, 2014. Robin Fenley, PhD, LCSW NYC Department for the Aging rfenley@aging.nyc.gov. For another person, do you…?. Pay bills Shop for groceries Pick up prescriptions Set up medications Prepare meals Provide transportation Do laundry.

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Family Caregiving Summit @ NYAM April 30, 2014

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  1. Family Caregiving Summit@NYAMApril 30, 2014 Robin Fenley, PhD, LCSW NYC Department for the Aging rfenley@aging.nyc.gov

  2. For another person, do you…? • Pay bills • Shop for groceries • Pick up prescriptions • Set up medications • Prepare meals • Provide transportation • Do laundry • Accompany to MD • Help someone • Dress • Bathe • Eat • Toilet • Transfer • Coordinate care

  3. > 65 million informal caregivers of persons 18+ • 1.4 million in NYC (2010 BRFS Report) • 65+ expected to double to 70 million by 2030 • Provide 80% of help required over course of illness • NAC/AARP, 2009

  4. Initial hurdles • Self identification as caregiver • Reluctance to accept caregiver role • 43% of NAC/AARP (2009) respondents felt they had no choice in taking on caregiver role

  5. Role changes • Competing demands • Personal life • Family life • Professional life • Caring for aging relatives AND • Kids, siblings, friends, partners • Multiple stressors can increase risk for depression & for abuse

  6. Gender(F= 66%; M= 34%)

  7. Typical Caregiver • 49 year old married female, employed, with young kids caring for her 69 year old mom NAC/AARP, 2009

  8. Caregivers Work • On average, care is provided for more than 20 hrs/week for almost 5 years (4.6) • Women: ~22 hrs/wk • Men: 17 hrs/wk • 57% of respondent caregivers were employed • 46% F/T; 11% P/T • 73% worked at some point in caregiving career NAC/AARP, 2009

  9. …with 70%.. • Rearrange work schedule • Decrease hours at work • Take unpaid leave • Frequent absences from job • Forego promotions • Resign/retire early NAC/AARP, 2009

  10. Unseen Caregiving Populations • Undocumented • Limited or non-English speaking • Grandparents • LGBT • Disabled • Mentally ill • Young caregivers

  11. Long-Distance Caregiving • Accurate assessment of need • Extent of self-care • Finding resources • Putting them in place • Providing oversight • Affordability • Guilt over absence, old family matters

  12. Caregivers & Service Usage • Only 10% to 20% of family caregivers use formal services • About one-half of primary caregivers provide care without outside help (friends, neighbors)

  13. First Steps • Learn about the illness/diagnosis • Discuss healthcare wishes & financing the cares • Broaden circle of care to other family members & close friends • Identify appropriate community services • Find support

  14. Caregiving doesn’t have to be a negative experience • Increased sense of fulfillment • Self-esteem • Spiritual growth • Mastery • Renewal of commitment

  15. Most Requested Services • Transportation • Information on financial assistance • Respite care • Technology • PERS • Telemed • Record tracking/organizer • Sensors • Falls, stoves, wandering NAC/AARP 2009

  16. Resources - National • Centers for Medicare & Medicaid Services www.cms.gov • Compare drug & health plans Medicare basics www.medicare.gov • Compare nursing home ratings www.medicare.gov/NHCompare • Compare Medicare-funded home health agencies (CHHA’s) www.medicare.gov/HomeHealthCompare • Family Caregiver Alliance www.caregiver.org • Nat’l Alliance for Caregiving www.caregiving.org • Nat’l Academy of Elder Law Attorneys, Inc. www.naela.org • Nat’l Assoc of Professional Geriatric Care Managers www.caremanager.org • The Eldercare Locator www.eldercare.gov 800.677.1116

  17. Resources - NYS • Deptof Health www.health.ny.gov • Medicaid • MLTCs • Partnership for LTC www.nyspltc.org • Combines LTC insurance & M’caid extended coverage • NH, HC, ALPs • Office on Aging www.aging.ny.gov • Senior Helpline: 800.342.9871 • Office of Temporary & Disability Assistance www.otda.ny.gov • Assistance with cash, heating, food, SSD/SSI claims; refugee & immigrant assistance

  18. Resources – City • Dept for the Aging www.nyc.gov/aging Nat’l Family Caregiver Support Program 311 • Human Resources Administration www.nyc.gov/hra Info Line: 718.557.1399 • Alzheimer's Association NYC Chapter www.alz.org/nyc 646.744.2900 • Health Information Tool for Empowerment (HITE) www.hitesite.org Directory of health & social services for low-income, uninsured & underinsured (NY)

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