1. Home Alone: Family Caregivers Providing Complex Chronic Care Susan Reinhard AARP Public Policy Institute In Collaboration with- Carol Levine and Sarah Samis United Hospital Fund The Long Term Care Discussion Group

3. Outline of Presentation  Background and methodology  Key findings  Recommendations

4. Background of Survey and Report  AARP Public Policy Institute and United Hospital Fund collaborated on first in-depth national survey of family caregivers This report documents: What medical/nursing tasks family caregivers do; What they find difficult; Who trains them; and Impact on their quality of life.

5. Background of Survey and Report  Grew out of concern that training and support for family caregivers based on outmoded assumptions and measures ADLs developed in 1950s to assess elderly patients’ recovery from hip fracture IADLs added in 1960s to assess independence at home  Those assumptions and measures were not intended to describe or assess family caregivers  Aging population with multiple chronic conditions and disabilities plus increased use of medications have changed caregiving responsibilities

6. Background of Survey and Report  Online survey questions based on studies of specific populations of family caregivers, literature review, and authors’ experiences  Fielded by Knowledge Networks, survey research firm in December 2011; hardware and Internet access provided if needed  Screener asked broad question about providing assistance of various kinds in previous 12 months  Exclusion: caregivers of people permanently residing in nursing homes  Full panel of 1,677 respondents

7. Key Findings  46% of the caregivers in the panel performed medical/nursing tasks  Almost all of medical/nursing caregivers (> 96 %) also provided ADL or IADL assistance.

8. Key Findings  The most commonly performed medical/nursing tasks were: medication management; helping with assistive devices for mobility; and preparing food for special diets.

9. Medical/Nursing Tasks

10. Key Findings  Family caregivers found some tasks more difficult than others.

11. Medical/Nursing Task # Performing Task # Reported Hard Task % Reported Hard Task Use incontinence equipment, supplies, administer enemas 19413067 Do wound care (bandages, ointments, prescription drugs for skin care, or to treat pressure sores or post-surgical wounds) and ostomy care 27518166 Manage medications, including IV and injections60737361 Prepare food for special diets31917053 Operate medical equipment (mechanical ventilators, oxygen, tube feeding equipment, home dialysis equipment, suctioning equipment) 1115449 Help with assistive devices for mobility like canes or walkers 33312939 Use meters/monitors (thermometer, glucometer, stethoscope, weight scales, blood pressure monitors, oxygen saturation monitors), administer test kits, use telehealth equipment 27510036 Operate durable medical equipment (hospital beds, lifts, wheelchairs, scooters, toilet or bath chairs, geri-chairs, for example) 1625836 Other7571

12. Key Findings  Caregivers performing medical/nursing tasks were often responsible for coordination of their family member’s care as well

13. Care Coordinators (percent) All M/N Tasks ADL/ IADL Caregiver375324 Care Recipient or Other Family Member of the Caregiver or the Care Recipient 231629 Primary Care Doctor231629 Specialist Physician555 Care Manager (geriatric, or from private insurance or government program) 334 Physician’s Assistant, Nurse, or Assistant in Doctor’s Office 332 Care Recipient + Caregiver/Other Family Member121 Other213 No Response222

14. Key Findings  Caregivers performing medical/nursing tasks had very little training 61% of caregivers who performed medication management who found it hard said that they learned how to manage medications on their own

15. So Many Meds, So Little Training  Three out of four family caregivers who provided medical/nursing tasks were managing medications, including administering intravenous fluids and injections.  Almost half were administering 5 to 9 prescription medications a day; one in five was helping with ten or more prescription medications a day.  Most of these family caregivers learned how to manage at least some of the medications on their own.  Many found this work difficult because it was time- consuming and inconvenient, they were afraid of making a mistake, and/or the care recipient would not cooperate. 15 “I constantly monitor drugs” -Family Caregiver

16. Training for Medication Management

17. Wound Care is Very Challenging and Training is Needed  More than a third (35%) of family caregivers who provided medical/nursing tasks reported doing wound care.  While fewer caregivers performed wound care tasks than medication management, a greater percentage of them (66%) identified it as difficult and many (38%) would like more training.  Of these caregivers, close to half (47%) were afraid of making a mistake and/or harming their family member. 17

18. Family Caregivers Feel Pressured 18

19. Home Visits  Home visits and additional help at home are not common Only 31% had home visits by medical professionals All M/N Tasks ADL/ IADL Received a Home Visit313626 No Home Visits696473 No Response<1

20. Home Visits  Home visits and additional help at home are not common 27% of caregivers had no additional help at home Additional Help at HomeAll M/N Tasks ADL/ IADL Additional Family Member544958 Home Care Aide192316 Friend121113 Other111 No Additional Assistance273025 No Response202119

21. The More tasks, the Greater the Consequences for Family Caregiver Well Being  Family caregivers who performed five or more medical/nursing tasks were most likely to believe they are making an important contribution.  Compared to those who performed one or two tasks, they were also most likely to report feeling stressed and worried about making a mistake.  More than half reported feeling down, depressed or hopeless in the last two weeks  More than a third reported fair or poor health. 21

22. Family Caregiver Help with Medical/Nursing Tasks and Effect on Care Recipients’ Quality of Life

23. Home Alone Recommendations 1. Consensus-building body (IOM) should revisit ADLs and IADLs and develop new measure to include medical/nursing tasks. 2. Individual health care professionals must fundamentally reassess and restructure the way they interact with family caregivers in daily practice. 3. Health care provider organizations must support professionals in their efforts by providing adequate resources and strong leadership. 4. Professional organizations should lead and support professionals in their efforts to improve communication and training for family caregivers.

24. Home Alone Recommendations (con’t) 5. Leaders in professional education should examine their curricula to determine how to strengthen work with family caregivers. 6. Accrediting and standard-setting organizations must take seriously their evaluation of how well institutions incorporate family caregiver needs. 7. Federal policymakers should proactively consider family caregivers in developing new models of care that focus on care coordination and quality improvement.

25. Home Alone Recommendations (con’t) 8. State policymakers should proactively consider family caregivers in funding and policy development. 9. Caregiver advocacy and support organizations should include resources that address the needs of family caregivers who have taken on the triple burden of personal care, household chores, and medical/nursing tasks. 10. Academic and government researchers should conduct further studies to understand medical/nursing tasks performed by different types of family caregivers.

26. Full Report AARP Public Policy Institute http://www.aarp.org/home-family/caregiving/info-10- 2012/home-alone-family-caregivers-providing- complex-chronic-care.html United Hospital Fund http://www.uhfnyc.org/

27. Thank you! Susan Reinhard sreinhard@aarp.org 202-434-3872 Carol Levine clevine@uhfnyc.org 212-494-0755 Sarah Samis ssamis@uhfnyc.org 212-494-0719