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www.thefamilycaregiver.org

A Consumer/Caregiver Perspective

WHO AREfamily caregivers?

“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

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

WHO AREfamily caregivers?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.

66% women

average 48 years of age

34% take care of two or more people

86% provide care for a relative

36% take care of a parent

70% take care of someone 50+

14% take care of an adult age 18 to 4914% take care of a child under the age of 18

WHAT DOfamily 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

WHAT DOfamily caregivers do?

Medical procedures Wound care Trach Care Catheterization Injections Medication Management Taking and reporting vital signs Gathering and reporting diabetes #s

WHAT DOfamily caregivers do?

Care Coordination Communicating with Healthcare providers Appointment management Scheduling coordination Managing transitions of care Discharge planning

WHAT DOfamily 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

Caregiving BurdenLow Burden High Burden

Report a strong financial hardship 10% 23%

Report worsening health due to caregiving 12% 28%

Average number of hours of care per week 5.9 46.9

Average number of ADLs performed by caregiver 0.2 3.2

Average number of IADLs performed by caregiver 3.6 5.5

Live with care recipient 12% 43%

Report using paid help 31% 42%

Employment status 77% 66%

Report having to have made one or more changes to work schedule 64% 83%Caregivers want more help or information 73% 83%

HOW DOES THIS IMPACTfamily caregivers?

depression

chronic disease

stress

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.

Family caregivers report having a chronic condition at more than twice the rate of non-caregivers.

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.

HOW DOES THIS IMPACTfamily caregivers?premature aging

increased risk of mortality

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.

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%.

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.

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

HOW COULD AN ON-LINE REPOSITORY OF MEDICAL DEVICES IMPACT

family caregivers and their loved ones?