From Dr. Joanne Lynn, Director, Center for Elder Care and Advanced Illness, Altarum Institute
“Nothing about me without me!” That’s the cry of the disability community and the AIDS community and so many others affected by health care dysfunctions. But for the elderly, thus far, it has been acceptable for everyone else to shape the care system – the doctors, the drug companies, the Congress, the managed care companies, the care coordinators, and on and on. But where are the voices of the elderly? When do we hear from the folks providing support and love for disabled elderly persons?
We desperately need that voice. Without it, we are prone to make decisions in the interests of the status quo or to prioritize myths and provider interests that don’t match what elderly people and their families most need. The frail and ill elderly are only sometimes able to voice their own needs – but they mostly have family who love and support them, and those family caregivers can become the key to building an efficient and reliable set of supports and services.
Most of us are now or will be family caregivers – and now, most family caregivers are overwhelmed, unorganized, and voiceless. We need to change that. Family caregivers need to speak up on behalf of their elderly loved ones, and themselves, and push back on commonplace presumptions as to what matters most at this time of life. But those of us who are not right now overwhelmed with care needs need to make it easier for family caregivers to have a voice!
That’s the point of our “Agitator’s Guide” (http://medicaring.org/action-guides/agitators-guide/). We’ve drafted up some specific things anyone can do—RIGHT NOW—to improve the lives of frail elders in your community. We are looking for your advice. Tell us what possibilities strike you as worthy. Try one or two out, and let us know how it goes. All of us aging persons need to weigh in on this and hit upon some acts that change the power of inertia – that is, “keeping doing what we’ve been doing” – which gets us nowhere. If you are or have been a family caregiver to an elderly person, weigh in by responding to this blog or writing to [email protected] – what would have helped you most? Who could make that happen?
The time for speaking out is now – we risk being overwhelmed with the costs and challenges of elder care as the numbers double. We must make services appropriate, reliable, and efficient. Let’s try out some avenues and see what works!
key words: eldercare, advocacy, quality improvement, patient engagement