Daily activities completed by family caregivers has been often grouped by task — a job description of sorts.
Tasks such as bathing and dressing, helping with eating, moving around or toileting are called Activities of Daily Living, or ADLs for short. Shopping, cooking, managing finances or providing transportation are referred to as assisting with Instrumental Activities of Daily Living (IADLs.)
Now we know that almost half of family caregivers are doing all of these things and more. They are doing things that make nursing students nervous before lots of training.
RELATED: AARP’s Caregiving Resource Center
A recent report, Home Alone: Family Caregivers Providing Complex Chronic Care tells us, for the first time, all the daily tasks these caregivers accomplish each day.
They’re giving medications — not just one pill in the morning — many different kinds of medications, several times a day — pills, eye drops, inhalers, injections, even infusion pumps. They’re checking for side effects and worry about making mistakes. Some are caring for different types of wounds while others are preparing special diets, or using incontinence equipment, glucometers, and telehealth devices. The list goes on: oxygen, tube feedings, home dialysis equipment, ventilators and more.
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If that is not amazing enough, these family caregivers tell us they have gotten virtually no training to do any of this.
- Six out of 10 learned about at least some of the medications on their own.
- Four out of 10 doing wound care had to learn at least partly on their own.
This is simply not acceptable.
Family caregivers who take on these complex “medical/nursing tasks” need and deserve clear, written instructions, training and practice, and encouragement to call professionals who can answer questions and offer more support — along with a contact number.
At AARP, we are raising the expectation that all health care professionals need to offer or arrange for this training and support. We are working with many partners to get new training opportunities in place to make it easier for family caregivers to get the help they need to do this complicated job … the whole job.
What family caregivers can do is expect and demand more from their doctors, nurses, pharmacists and others.
- Do not sign the pharmacy form that says you have been counseled on the prescription if you really don’t understand the medication, or how to give it and what to expect.
- Ask for help.
- Don’t tell the hospital that you and your family member are ready for discharge if you do not feel safe to do the tasks you have been told you need to do.
- Tell the nurse or social worker that you need more instructions.
- Ask for a referral to home care for follow-up teaching.
- Tell the doctor you are worried and need more support.
Our research shows that family caregivers are doing more than ever before. Now we need to make sure we help them do this crucial work. For information, try Next Step In Care.
— Susan Reinhard, PhD
Susan C. Reinhard heads AARP’s Public Policy Institute. She has been a champion for family caregivers and has incorporated their needs and issues in public policy development, in curriculum and nursing instruction at all levels, and in state administration of health and senior services.