The GUIDE Pilot Program

The GUIDE Pilot Program

7 Million. Yes, that right. According to the Alzheimer’s Association, the number of people now living with Alzheimer’s disease or other dementias in the U.S. has surpassed 7 million for the first time in history. If we could count them, the number of people who are caring for loved ones with dementia would easily be in the tens of millions. That is a lot of people walking a very difficult and stressful road on which it can be hard to find quality dementia care and consistent support for caregivers.

There is a light of hope, however, on the dementia care horizon. Last year, the Centers for Medicare and Medicaid Services (CMS) began what is known as the GUIDE program. Guiding an Improved Dementia Experience is an 8-year pilot program whose goal is to support people living with dementia and their unpaid caregivers. The program has started in over 300 communities around the U.S. with a goal of finding the best ways to create a comprehensive and coordinated dementia care system that can boost the quality of life for those with dementia while reducing the stress and strain on their caregivers. Program components call for a blend of coordinated care management, caregiver support and education, respite care, and access to 24/7 dementia care consultation.

We are particularly excited about the GUIDE program as it seems to reflect the growing nationwide awareness that care for those with dementia has been a fragmented process that needs big improvement. The fact that the needs of care partners are also being recognized as vital in the dementia care network is also welcome news. While it’s a bummer that GUIDE is an 8-year pilot, we could, in 2033, have a national template for how to help caregivers feel more educated and supported in their caregiving journeys. Since so much caregiving stress comes from lack of knowledge and uncertainty about what lies ahead, having a system of care resources, education, support from trained dementia specialists and respite care could empower caregivers in ways that would lead to reduced fear, anxiety and stress while facilitating better care for their loved ones.

Throughout our blogs and book, we often describe that, as a caregiver, you must engage in three domains of action for balance and well-being: within yourself, for yourself, and for your loved one. While you will always have to do the “inside” work of managing stress and emotions within yourself, here’s hoping the GUIDE program will provide a national template for steps that you can take for yourself and for your loved one.

To find out more about the GUIDE program and to see if there is a pilot program underway in your area of the country, visit https://www.cms.gov/priorities/innovation/innovation-models/guide.