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Most caretakers of those with dementia need help navigating services, survey shows


About 7 million Americans live with Alzheimer's disease or some other form of dementia. Caring for these people often means coordinating multiple doctors, managing prescriptions, arranging social services and filling out lots of insurance forms. NPR's Jon Hamilton reports on two new surveys from the Alzheimer's Association showing that unpaid caregivers badly need help with these tasks.

JON HAMILTON, BYLINE: One survey included more than 1,500 caregivers, the other more than 1,200 health care workers. The association's Sam Fazio says caregivers, usually friends and family members, found that their responsibilities were both stressful and difficult.

SAM FAZIO: A lot of our folks say, I'm told that I have a diagnosis and then I'm left to figure it out on my own. I can't figure it out on my own, I need help.

HAMILTON: Help doing things like getting specialists to communicate or finding a source of respite care. Fazio says the survey of professionals - including nurses, physician assistants and social workers - found that current health systems don't offer much assistance to patients and their caregivers.

FAZIO: Sixty percent of the health care workers we surveyed said that these systems aren't able to really help people navigate through this disease and give them what they need.

HAMILTON: Caregivers typically devote more than 30 hours a week to their unpaid work. Fazio says the survey found that what they want is a 24/7 helpline or a designated expert they can contact to get advice.

FAZIO: One of the really important things is somebody who could take time with them and explain what the disease is and what's going to happen.

HAMILTON: Fazio says the designated expert doesn't have to be a doctor or a nurse.

FAZIO: Sometimes people who are playing that role are social workers or case managers. There just needs to be a point person who could really help folks navigate their way.

HAMILTON: That may be coming. This summer, the Centers for Medicare and Medicaid Services plans to launch a model program called GUIDE. It's designed to support people living with dementia as well as their unpaid caregivers. Jon Hamilton, NPR News.

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Jon Hamilton
Jon Hamilton is a correspondent for NPR's Science Desk. Currently he focuses on neuroscience and health risks.