Learning from the stories of Alzheimer's


One in eight older Americans has Alzheimer’s disease. If you put that figure in context with your family, that means that chances are, one of your great-grandparents has Alzheimer’s – the sixth-leading cause of death in the United States. And as our population lives longer, the number of Americans with Alzheimer’s or other dementias will continue to increase.

The numbers are staggering, and when you consider how deeply caregivers and loved ones are impacted by dementia, the ripple effect grows.

In a series of Listening Sessions hosted by Lieutenant Governor Elizabeth Roberts and Director of Elderly Affairs Catherine Terry Taylor, patients, caregivers and families are coming together to share their stories. Patients discuss their frustration with treatment. Caregivers admit to putting their health and their needs second. Families shed tears over an experience that feels like mourning, though their loved one is still alive. As with any stressful situation – health-related or otherwise – talking about it helps. According to a report issued by the Alzheimer’s Association in 2012, 61 percent of caregivers say that the emotional stress of their role is high to very high. Forty-three percent report the same stress levels due to the physical demands of care giving. Knowing that you are not alone can be a weight off your shoulders.

It is especially comforting for these Rhode Islanders to know that the people looking to improve the system are familiar with their pain and fears. Taylor has been candid with her own experiences. Her grandfather had vascular dementia, and her struggle continues, as her son, who has Down syndrome, is guaranteed to develop Alzheimer’s. She knows firsthand how taxing care giving can be, and is advocating for those like her at the state and federal level.

Through these Listening Sessions, she and Roberts will accumulate information about gaps in service in order to better care for people with dementia and their families. With an inventory of resources, contacts and best practices, patients and caregivers no longer have to feel alone.

But even if you don’t know someone with dementia, these sessions and the report that will be issued next summer still impact you. Family caregivers provide 80 percent, the vast majority, of care for people with dementia. These unpaid nurses, companions, cooks and taxi drivers account for $210 billion in services. That’s $210 billion that is diverted from our nation’s health care system, so investing in support services for those caregivers pays for itself and then some.

Knowing that this is a priority for Rhode Island should help give everyone peace of mind.


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