Home Alone: Family Caregivers Providing Complex Chronic Care

1. Home Alone: Family CaregiversProviding 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.

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

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. “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.

18. Family Caregivers Feel Pressured

19. Home Visits • Home visits and additional help at home are not common • Only 31% had home visits by medical professionals

20. Home Visits • Home visits and additional help at home are not common • 27% of caregivers had no additional help at home

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.

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

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

24. Home Alone Recommendations (con’t) • Leaders in professional education should examine their curricula to determine how to strengthen work with family caregivers. • Accrediting and standard-setting organizations must take seriously their evaluation of how well institutions incorporate family caregiver needs. • 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) • State policymakers should proactively consider family caregivers in funding and policy development. • 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. • 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