Ellen sat in my office, her eyes fixed in a stare at nothing in particular. I could see the tears starting to fill her eyes, tears which she was fighting to hold back, hoping I wouldn’t notice. For the past two years, Ellen had been the primary caregiver for Monte, her husband of 54 years. Monte’s diagnosis of Alzheimer’s two years earlier was devastating to the couple, and I shouldn’t have been surprised by Ellen’s reaction when I asked her how she was coping. Her response, or lack of response, told me everything I needed to know—the caregiving was taking a toll on Ellen’s mental, physical, financial and emotional health.
The Alzheimer’s Association just released its 2016 annual report on the costs, financial, emotional and otherwise, on individuals and families dealing with Alzheimer’s and other dementias. Right now, there are over five million people living with Alzheimer’s in the United States, and one in three people will die with Alzheimer’s or other dementias.
Alzheimer’s doesn’t just take life from those diagnosed with the disease, it also steals the quality of life from family members and loved ones. Last year, more than 15 million caregivers, primarily family members, gave over 18 billion hours of uncompensated care. Forty percent of family caregivers suffer from depression, and studies have found caregivers are more likely to show signs of cardiovascular and kidney disease than others.
Caregiving takes a financial toll as well. Loved ones contribute an average of more than $5,000 per year to help care for people with Alzheimer’s, and almost half had cut back on their own spending. Many deplete retirement accounts, sell assets such as cars or jewelry, or surprisingly, postpone their own necessary medical care in order to help financially.
Compounding the problem is the lack of knowledge about resources and services to help. For example, only a third of respondents correctly understand that Medicare doesn’t pay for custodial care. The report concludes that lack of knowledge contributes to the problems—physical, emotional and financial—of caring for a family member with Alzheimer’s disease.
While current research hasn’t found a cure for Alzheimer’s yet, you can bridge the knowledge gap. Start now by meeting with an experienced elder law attorney who can provide direction and assistance, including information on various government assistance programs that can help.