Understanding Family Caregivers: Essential Support for Those with Chronic Illnesses

1. A Consumer/Caregiver Perspective Educate. Support. Empower. Advocate. www.thefamilycaregiver.org

2. Who are family caregivers? People who provide essential “unpaid” assistance to someone with a chronic illness and/or disability “family” describes a special relationship with the care recipient, based on birth, adoption, marriage, or declared commitment “caregiver” is a job description that can include providing personal care, carrying out medical procedures, managing a household, and interacting with the formal healthcare and social service systems on another’s behalf

3. family caregivers? Who are Nearly one-third of the U.S. adult population: 65.7 million people Source: Caregiving in the US. Conducted by the National Alliance for Caregiving, in partnership with AARP, funded by MetLife Foundation. Released 12/9/2009. Not yet in publication. Available at www.Caregiving.org.

4. What do family caregivers do? • Activities of Daily Living • Transfers • Getting in and out of beds and chairs • Getting dressed • Bathing/Showering • Getting to and from the toilet • Feeding • Dealing with incontinence/diapers

5. What do family caregivers do? • Medical procedures • Wound care • Trach Care • Catheterization • Injections • Medication Management • Taking and reporting vital signs • Gathering and reporting diabetes #s

6. What do family caregivers do? • Care Coordination • Communicating with Healthcare providers • Appointment management • Scheduling coordination • Managing transitions of care • Discharge planning

7. What do family caregivers do? • Instrumental Activities of Daily Living • Transportation (providing and/or arranging) • Housework • Grocery Shopping • Preparing meals • Managing Finances • Giving medications, pills, injections • Arranging or supervising paid support services • Navigating insurance

8. Caregiving Burden

9. How does this impact family caregivers? stress 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. depression • Family caregivers who provide care 36 or more hours weekly are more likely than non-caregivers to experience symptoms of depression or anxiety. For spouses the rate is six times higher; for those caring for a parent the rate is twice as high. chronic disease • Family caregivers report having a chronic condition at more than twice the rate of non-caregivers.

10. How does this impact family caregivers? premature aging • Family caregivers experiencing extreme stress have been shown to age prematurely. This level of stress can take as much as 10 years off a family caregiver's life. increased risk of mortality A wife's hospitalization increases her husband's chances of dying within a month by 35%. A husband's hospitalization boosts his wife's mortality risk by 44%.

11. What device challenges do family caregivers face? • Devices too complex for family caregiver use, even with initial training • Device instructions/manuals not written for family caregiver audience • Instruction provided during stressful transitions of care • Device labeling often includes confusing and difficult-to-comprehend warnings, precautions, and contraindications. • Device may not be compatible with family caregiver’s capabilities, lifestyle or environment. • Device delivered not always the same make or model that prescriber described. • Pets, children, home environment • Device maintenance may take place in a setting or time significantly remote from initial instruction.

12. How could an on-line repository of medical devices impact family caregivers and their loved ones? • Reduce caregiver stress • Potential to reduce adverse outcomes • Potential to improve patient outcomes • Improve consumer relations • Demonstrate commitment of industry and government to make sure the patient is as healthy and has as high a quality of life as possible