More than two decades passed between my grandmother and my dad’s diagnosis, and many more people were speaking of dementia and Alzheimer’s publicly. We knew what the disease meant for both my dad and for our family, but we didn’t know what services were available to us as caregivers or to him to ensure the best quality of life.
As a young mother in the late 1980’s, I remember feeling sad seeing my grandmother’s memory slip away from Alzheimer’s, but what struck me the most was the impact caregiving for her had on my parents. At the time, there was very little support available to them. When my dad was diagnosed with Alzheimer’s disease 25 years later, we had more information available to us, and it had become very evident that quality of life improves when families have access to community resources for medical and non-medical treatments, support services, and clinical trials.
In 2017 my brother and I co-founded the Windward Foundation, a non-profit headquartered in Herndon, Virginia, with a mission to serve Alzheimer’s caregivers. Our personal experience left us with an overwhelming feeling that this disease takes a devastating toll on family caregivers and we wanted to do our part to ease their burden. As the Executive Director, I am in tune with what is happening on issues related to caregiving and was encouraged when Medicare began to reimburse for critical care planning services for Alzheimer’s and dementia in 2017. However, most patients and healthcare providers are unaware of this resource. In fact, according to the Alzheimer’s Association, fewer than 1% of seniors living with Alzheimer’s received the care planning benefit. As a result, the bipartisan Improving HOPE for Alzheimer’s Act was introduced to support provider education and outreach to improve awareness and utilization of comprehensive Alzheimer’s and dementia care planning services covered under Medicare.
Please let your elected officials know that you support the Improving HOPE for Alzheimer’s Act that will give clinicians the knowledge and tools to better assist their patients and families who are living with dementia. It will make a world of difference to so many family caregivers!