Why we are supporting dementia caregivers

Mom was diagnosed with Alzheimer’s disease in 2014. I remember how angry I was when Dad initially delivered the news. Why her? Why us? We all knew it…we just didn’t want to admit it. But now, it was real, and we had to accept it. Life for our family would never be the same. It was roughly at this moment that Stephanie and I decided that we wanted to do something to help combat this cruel disease that is essentially a long, slow, shuffle to death.

Flash forward to 2018, when we made the decision to launch our foundation; what would be our mission and purpose? It seemed clear: to help cure Alzheimer’s. So, when we sat down with our attorney, we told him said purpose. He shook his head and gently rubbed his temples, saying “You alone will never be able to cure Alzheimer’s.” “No offense,” he continued, “but you will just not be able to, at least out of the gate, raise the resources that will provide the tipping point to finally cure this disease.”

We didn’t want to admit it, but he was right. Instead, he suggested we focus on the caregivers…something with which we and other family members had personal experience. After some thought, we decided that it was exactly what we should do. It’s something we understand, and an area in which we can make an impact. Our family is fortunate in that we have the necessary resources to be sure Mom is well-taken care of, and is able to live in a wonderful, award-winning memory care community. But, many other families are not as fortunate.

Approximately 15.7 million adult family caregivers care for someone who has Alzheimer’s disease or other dementia. [Alzheimer’s Association. (2015). 2015 Alzheimer’s Disease Facts and Figures.] And, many of these families have no choice but to have their loved one at home, under their care, raising their own children, work full-time, run the household, and are stretched for money. It can be a frustrating and exhausting experience. These caregivers often feel that they have no life of their own, and feel as though they’re at their wits’ end. They frequently do not know where to turn when things get hard. And they always do. So that’s where we’ll come in.

On average, caregivers spend:

● 13 days each month on tasks such as shopping, food preparation, housekeeping, laundry, transportation, and giving medication;

● 6 days per month on feeding, dressing, grooming, walking, bathing, and assistance toileting;

● 13 hours per month researching care services or information on disease, coordinating physician visits or managing financial matters. [Gallup Healthways. (2011). Gallup- Healthways Well-Being Index.]

When asked what type of support these families need, answers to our survey research were many, but commonly people requested help with meals, home care, lawn care, transportation for the loved one to medical appointments, and most expectedly, nursing/CNA care to give them a much needed break. So, as of this writing, we are doing the work to determine how best to provide this sort of caregiver and family support. We are excited to see where it will go, because we know that help is desperately needed.

We will continue to support and advocate for efforts to cure Alzheimer’s. But, once we awakened to help family caregivers of not only Alzheimer’s, dementia, and cancer patients as well, we felt humbled by the responsibility (and joy) of being able to serve these families. Even with our circumstances, managing the care of my mother is difficult, though nowhere close to what many families are struggling with.

Our attorney was right: This is a mission and purpose we can sink our teeth into, and will be a truly noble effort.