Information for Caregivers

Not only do caregivers have to provide significant time and effort to help those affected with IBMPFD, the very act of providing care creates problems for the caregivers, both physical and mental.  The information on this page is intended to assist caregivers in finding solutions to help with providing care as well as suggestions for dealing with their resulting problems. There are support organizations, some affiliated with religious organizations, that may provide some kinds of assistance.  One should check for those types of organizations in one's geographic area.

Caregivers are requested to share their experiences with others by sending me information to add to this website. This page is a "work in progress" so suggestions for contents are needed and most welcome.


Since IBMPFD is adult onset, many of those affected will be able to use Medicare.  Medicare Caregivers web site provides information for caregivers regarding use of Medicare, care options, and financial issues.

There were some articles in Quest regarding caregiver issues, your can search the Quest archives for specifics (

10 Essential Tips for Caregivers

Being a Caregiver: Understanding the Financial Impact

Rehab Locator for Caregivers

Physician Search by Specialty

A list of related resources

The MDA offers advice for caregivers at

The Family Caregiver Alliance is a website that offers several different types of caregiver information, including suggestions for the caregiver keeping themselves healthy.

The Strength for Caring website has a variety of pages for advice.

The ARCH National Respite Network and Resource Center is to provide temporary help to caregivers with their responsibilities.

A list of related resources

Age in Place | The National Aging in Place Council

Seniors' Guide to Aging at Home Safely and with Dignity

Care Management | National Association of Professional Geriatric Care Managers