Today, MDA, supported by grants from VieMed Healthcare and SYNERGY HomeCare, has released the MDA Guide for Caregivers, a comprehensive resource to empower individuals living with neuromuscular disease and their caregivers. The guide provides practical advice, recommendations, tips and resources to maximize quality of life, drawing on the expertise of numerous MDA Care Center staff.

The guide covers many topics in detail, information that will be useful to families at any stage of the caregiving process, whether new or experienced.

Highlights of the caregiver guide include:

How to find caregiving help — The guide addresses how to hire caregivers and the different options available, offering best practices whether one decides to use a care agency, hire caregivers directly on their own or rely on help from family and friends.

Finding other assistance — Information is provided on finding additional outside help, including emergency medical help, home-modification aid and long-term care options.

Daily care topics — The guide explores common topics related to day-to-day care for individuals living with neuromuscular disease. Nearly 50 topics are addressed, including accessibility at home, safety, bathroom needs and travel. Special attention is paid to pain and combatting pressure sores, joint pain and swollen limbs.

Links and resources — Caregiving-related articles and blog posts that have recently appeared on MDA’s Strongly blog and in MDA’s quarterly magazine, Quest, are listed in an appendix in the back of the guide. In addition, relevant services and links are highlighted.

Respiratory care — The guide includes a dedicated section for promoting respiratory health, an especially vital issue for children and adults living with neuromuscular diseases. The guide talks about identifying signs of respiratory distress, the equipment available to aid in breathing and how to obtain the equipment. Different ventilatory support options are discussed, including a section on intubation and how to care for someone who has been intubated.

To access other MDA caregiving resources, along with the MDA Guide for Caregivers, click here.