When Someone You Love Has Dementia

When Someone You Love Has Dementia

As an experienced geriatrician with many years of seeing dementia patients and their families, I thought I understood not only dementia but of the impact of the disease on family caregivers. So, I was taken aback when the daughter of one of my patients asked me to read the manuscript of a book she had written about her journey with her mother who had Alzheimer’s disease. I realized that, although I knew the medicine, I didn’t understand how difficult caring for someone who had Alzheimer’s disease really was.Later, this same daughter, Anne P. Hill, was diagnosed and treated for breast cancer. After her mother died, we met for coffee and she asked me why she never received any kind of resource book to guide her as a caregiver through her mother’s 10-year dementia journey.

“When I was diagnosed with breast cancer,” she said, “I was given a notebook by every doctor that treated me about what to expect and how to cope.” She went on, “But you never gave me anything to help me with my mom who had Alzheimer’s disease.” I was embarrassed, because she was right. But I didn’t have a resource that I liked well enough to give to family caregivers. So, Anne and I decided to write the notebook that I wish I could have given her. We co-authored Help Is Here: When someone you love has dementia.

According to the Alzheimer’s Association, more than five million Americans have been diagnosed with Alzheimer’s disease or another dementia illness like vascular dementia or Lewy body dementia. In 2013, 15.5 million family caregivers and friends provided an estimated 17.7 billion hours of unpaid care.

Marian Hodges, MD