Home / Learning More About Caregiver Needs

Learning More About Caregiver Needs

Last month we celebrated the many amazing caregivers in our community as part of National Family Caregivers Month. Earlier this Fall, MDF conducted a survey of caregivers in the MDF community and we’d like to share with you what we learned. We received 96 responses and discovered that approximately half of the respondents care for their spouses or partner while the other half provide care for their children (most of whom are adult children).  Many people caring for younger children with DM may not necessarily identify themselves as “caregivers” since caregiving to a child is a natural aspect of parenting.

Nearly all respondents view their primary caregiver role as providing love and emotional support for the person for whom they are caring. The vast majority also consider managing the house and garden and preparing meals as part of the caregiver role. Slightly more than 30% identified dealing with medical equipment as another aspect.

MDF inquired about caregivers’ employment status and found that over 40% of respondents have full-time jobs outside of their homes. About 38% quit their jobs or had to limit their employment due to caregiving needs. Thankfully, nearly half of the respondents have additional people involved in caregiving—mostly other family members—and about 20% have professional care attendants or hired in-home caregivers.

Caregivers for persons with DM face many challenges, as we know, and several of you shared your specific challenges, such as getting enough sleep and respite time, dealing with your loved one’s mood swings, and having the finances for a variety of therapies (physical, occupational, speech, etc.). An overwhelming number of caregivers also wished for some type of support group.

MDF is evaluating the results and will soon be announcing plans for educational programs for our caregiver community. Thank you to all of you who participated!

12/04/2013

Partners

© Myotonic Dystrophy Foundation. All rights reserved.