Memory Day 2016

Jessica Snell, Rep. Dohrman, Linda Fisher

Advocates from the three Missouri Alzheimer’s Association Chapters annually converge on our State Capital to take action against the Alzheimer’s epidemic. We come with facts in hand: Alzheimer’s is the sixth leading cause of death; 110,000 Missourians have Alzheimer’s; 70 percent live at home; 312,000 unpaid caregivers; and the value of unpaid care in Missouri is estimated to be $4.3 billion.

Each year we visit with our legislators about Alzheimer’s Grants for Respite. This year we were asking for $450,000 to be placed in the budget for the Department of Health and Senior Services. We had sample stories to share about the need for respite, but I shared my own story.

I was working when Jim developed dementia at 49. Since I wanted to keep him at home as long as possible, I looked into assistance that might be available. It so happened that since Jim was so young, he did not qualify for the programs in place for seniors. I turned to the Alzheimer’s Association, and they gave me the only help I was able to find—respite funds.

Did these funds cover all the costs? Not by a long shot. As a fulltime employee, my needs were above and beyond what this kind of program would cover. The real beauty of respite is that a caregiver can have some time to him- or herself.

It is common for a caregiver to burn out. Some of the common side effects of caring for a loved one with dementia include depression, stress, lack of sleep, health problems, and a sense of being overwhelmed. A primary caregiver has been thrust into a situation beyond the imaginable.

Stacy Tew-Lovasz, president of the St. Louis Chapter, pointed out during the Memory Day Ceremony that women are greatly affected by Alzheimer’s. Women make up more than 60% of the caregivers. More than two-thirds of those affected with Alzheimer’s are women.

I can tell you by experience that after being a primary caregiver, you have a great dread of developing Alzheimer’s. How sad is it that a woman would spend a decade or more being a caregiver and then develop the disease?  

When Jessica Snell and I visited with our representatives on Memory Day, we pointed out that the $450,000 could save Missouri taxpayers $2 million. I know that may seem unlikely to some people, but here is how we arrive at that savings: 800 respite families X $152 average nursing home cost per day X 30 days delay in Nursing Home placement X 60% of Nursing Home residents on Medicare = $2 million savings in Medicaid Nursing Home Care.

Honestly, I think the estimate is on the low side. Surveys show that 99% of respite recipients said they were able to keep their loved one at home longer. In-home care allowed me to keep Jim at home for about an additional six months. No, respite did not pay for all that, but respite reimbursement helped me manage the expense.

Memory Day is a special day for Alzheimer’s advocates to share our message with our Missouri representatives and senators. They need to hear from us so that our respite funds don’t get put on the back burner.

One thing you learn in advocacy training is to make the “ask.” We were heartened to learn that we had their full support with the magic word, “Yes.”

Copyright © March 2016 by L.S. Fisher

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