Gary Barg: Gail, can you tell me about the work of the National Alliance for Caregiving?
Gail Hunt: We’re a coalition of about 45 national organizations that have come together around the issues of family caregiving—family meaning friends and neighbors, as well as relatives across the life span. We’re the people that do most of the national research around family caregiving, so we have all the data on caregiving in the US – how many caregivers there are and what’s the impact on caregiver health, caregiver and work, financial impact and all of those kinds of things.
Gail Hunt
We also have woven together in a virtual network the 90 state and local caregiving coalitions that exist around the country. They have an annual meeting every year and quarterly conference calls and Webinars on topics like fundraising and activities for November—family caregiver month. We’ve also been involved in developing programs for librarians, occupational therapists and financial planners around caregiving. In May, we launched the International Alliance of Carer Organizations, which includes nine countries, and we’re in the process of setting up a communications Web site and plan for the International Alliance.
Gary Barg: How does it affect the family caregiver in a state where there is a caregiving coalition?
Gail Hunt: The coalitions are made up of organizations that are interested in supporting family caregivers. So maybe it’ll be disease-specific groups like the Alzheimer’s Association or the MS Society or hospitals or home health agencies, Area Agencies on Aging and sometimes government agencies. They actually usually try to focus on state or local levels, trying to be sure that there’s legislation that gets passed favorable to family caregivers. And there are a couple of states where that’s actually been successful, such as Utah and Hawaii. In California, they were facing huge cuts to their state budget and the family caregiver coalition in Sacramento was able to see that programs were not demolished totally for the caregiver resource centers around the state.
They are always thinking about caregiver awareness – both the awareness of the community, of the service that caregivers are providing, but also caregivers themselves being aware—self-identifying so that they know that they’re not alone in their services out there.
Gary Barg: We’ve seen each other at so many conferences around the country over the past two decades. One of these events was actually the First International Conference on Family Care to be hosted in the United States. I was impressed to learn what some other countries are doing to support their caregivers or carers. You had mentioned that you just took part in the inaugural meeting of the International Alliance of Carer Organizations. What is it that we can learn from what’s happening for family caregivers or carers abroad?
Gail Hunt: The UK, Australia, and even New Zealand have been really focused on caregiving issues. In 1998, the UK passed the Carer Recognition Act. Since then, there’s been legislation that actually provides stipends to family caregivers if they’re going to be caring for a child with special needs or a disabled spouse. The caregiver or the family carer gets a stipend for the services that they’re providing – in particular, if they leave the workforce to care for the person. Also, if they do leave the workforce and then their services are no longer needed, the caregiver then can receive training to go back into the workforce. So, we could really learn a lot from those three countries. They are way ahead.
: What would be the one most important piece of information you’d like to leave family caregivers with?
Gail Hunt: There are lots of resources out there to help. If you’re caring for an older person, you can turn to the Elder Care Locator, which is online and has an 800 number [Ed. Note: 1-800-677-1116]. And they can hook you up with whatever local resources are available in your community or if you’re a long-distance caregiver, in the community of the person that you’re caring for. There are disease-specific groups that now focus quite a bit more on caregivers that you can turn to. There are the ADRCs – the Aging and Disability Resource Centers – which help caregivers in planning for long-term care. And they are also for caregivers caring for someone at any age.