What do family caregivers want? What do they need?

Education and training. Respite care. And, most important, peer support.

Those are the conclusions of the HSC Foundation, which, along with several partners, organized a series of 2009 listening session to hear what caregivers had to say. They were not necessarily caregivers of parents or other frail elderly family members, Some were caring for wounded vets, others for kids with disabilities, and others were African-Americans caring for family members of all ages. HSC calls them “overlooked caregivers.” Yet their message is valuable for us all.

I was struck by how important peer support was to all of these people. While assisting kids and vets can be a longer-term effort than caring for an elderly parent, the lesson applies to all families. It is important to get advice from advocacy groups and government officials, but caregivers really want to hear from other caregivers. These family members hungered for an experienced mentor who could provide both practical advice and emotional support.

This assistance will be increasingly important in a world of consumer-directed care. There are many benefitis to giving families the flexibility they need to design individualized care for their loved ones. But with that flexibility comes tremendous responsibility and a need to learn about an immensly complex system of government, non-profit, and for-proft supports. Wouldn’t it be nice if these caregivers could receive some comprehensive training as well as peer support to go along with these flexible benefits. 

I understand it isn’t easy to convince people to take on this mentor role. Those still caring for parents are usually overwhelmed and have little time to help others. Those whose caregiving role has ended are often exhausted and unwilling to relive their experience. But I suspect many would be happy to play this mentor role if someone asked them. The question is: Who can put them together with those looking for this critical support?