My last grandparent, my paternal grandmother, passed away earlier this year. She lived into her 90s and, like both my maternal grandmother and grandfather, she suffered mild to moderate dementia in the final years of her life. My mother cared for each of them as one by one their health declined. She had ample support from our extended family, but she was the one who had to bathe them and help them go to the bathroom or remind repeatedly them that so-and-so relative had died many years ago. My parents’ experience taking care of elderly family members who no longer had their full mental faculties lasted two to three years in each case, unlike people who care for family members with Alzheimer’s disease - a task that can last a decade or more.
Last week, Tiffany Stanley wrote a feature in the National Review about her experience caring for her ailing aunt, Jackie, who was diagnosed with early onset Alzheimer’s. Stanley’s father had been caring for his sister when his congestive heart failure made him too ill to continue, so his 29-year-old daughter stepped in. She was unprepared for the realities of caring for an Alzheimer’s patient, and she chronicles her experiences with touching anecdotes about her family’s experiences, as well as a detailed look at Alzheimer’s care in the U.S. She also details the impact the disease has on caregivers:
Alzheimer's places a heavy toll on family caregivers. Their own health suffers. Dementia caregivers report higher rates of depression and stress than the general population. Some studies show they have an increased risk for heart disease and stroke as well as higher mortality rates. Their own use of medical services, including emergency-room visits and doctors' appointments, goes up, and their yearly health care costs increase by nearly $5,000, according to research from the University of Pittsburgh and the National Alliance for Caregiving. "Caring for a person with dementia is particularly challenging, causing more severe negative health effects than other types of caregiving," reads an article in the American Journal of Nursing.
Stanley also writes about the tension between funding a cure - to keep people from spiraling late stage dementia - and caring for those who are already sliding down that route:
Lost too often in the discussion about a cure has been a much more basic, more immediate, and in many ways more important question: How can we better care for those who suffer from the disease? Dementia comes with staggering economic consequences, but it's not the drugs or medical interventions that have the biggest price tag; it's the care that dementia patients need. Last year, a landmark Rand study identified dementia as the most expensive American ailment. The study estimated that dementia care purchased in the marketplace—including nursing-home stays and Medicare expenditures—cost $109 billion in 2010, more than was spent on heart disease or cancer. "It's so costly because of the intensity of care that a demented person requires," Michael Hurd, who led the study, told me. Society spends up to $56,000 for each dementia case annually, and the price of dementia care nationwide increases to $215 billion per year when the value of informal care from relatives and volunteers is included.
The story is equal parts frustrating and heart-wrenching, but I came away much better informed about what a diagnosis entails, not just for the patients, but the families connected to them.
Previously: No one wants to talk about dying, but we all need to, Mindfulness training may ease depression and improve sleep for both caregivers and patients, Can Alzheimer’s damage to the brain be repaired?, The state of Alzheimer’s research: A conversation with Stanford neurologist Michael Greicius and Exploring the psychological trauma facing some caregivers
Photo by Henry Rabinowitz