The Phone is a short story about an older gentleman who lived alone, walking the streets of his community with no real purpose, when he discovers his family’s childhood phone in an antique shop he takes it home, plugs it in and begins to dial. He doesn’t call his grown son or any of his other relatives or friends; admittedly, he has very few. Instead, he calls the number of his teenage sweetheart, at which point he gets the surprise of his life when he hears her unmistakable voice on the other end.
I wrote that story with no one in particular in mind, but I have known people afflicted with some form of dementia. When I looked into the subject of dementia as background information for my little project, I was shocked to find out how prevalent a problem it has become, for those afflicted, and the people that care for them.
Throughout the world, approximately 47.5 million people are living with some form of dementia. In the United States alone, an estimated 5.3 million suffer from Alzheimer’s disease, according to the Alzheimer’s Association. Unfortunately, this number is expected to grow by as much as 40 percent in individuals 65 and older by 2025. While dementia and Alzheimer’s disease are devastating to the individual, they also often prove to be overwhelming for the families left to care for them.
Who is Taking Care of Alzheimer’s Patients?
It is believed that the overwhelming majority of patients is cared for at home by family members. Approximately 2/3 of caregivers are women, with 34 percent over the age of 65. More than half of caregivers are taking care of one or both of their parents. (2) Of these individuals taking care of a patient with dementia, almost 60% rate the stress of being a caregiver as high or very high, while 40% admit to suffering from depression. (2) As a result of the emotional and physical toll associated with caregiving, caregivers received $9.7 billion in added health care costs of their own in 2014. (2)
What Does a Caregiver Do?
In 2014, family and friends provided an estimated 17.9 billion hours of unpaid care to Alzheimer’s and dementia patients. This care included everything from bathing, dressing, and toileting to feeding, monitoring for dangerous behavior, and cleaning up behind them. In addition, almost 1/3 of caregivers are faced with caring for a dementia patient that exhibits aggressive behavior. As a result, they may be subjected to everything from spitting, biting, and scratching to verbal threats, shouting, and swearing.
Changes for the Caregiver
With an adult child most often serving as the primary caregiver, it frequently results in significant changes in other parts of their life. For instance, 43% of sons and 42% of daughters report their professional career has suffered due to their caregiving responsibilities. This is usually the result of having to miss work to take care of the dementia patient, as well as experiencing difficulty managing all their work responsibilities.
According to the respondents in a recent survey, 80% admit that their caregiving responsibilities have placed a train on their marriage or relationships. This is due to decreased time together and increased stress and fatigue. Additionally, caregivers often face an upset in the balance of child and household responsibilities, which results in resentment, as one spouse is left to take care of the home and children, while the other focuses on the Alzheimer’s patient. Forty-eight percent admit that caregiving has put a strain on their relationship and is causing them to “drift apart” from their spouse.
With no cure available for dementia or Alzheimer’s disease and the numbers of patients diagnosed with these conditions expected to grow, more and more people are going to be thrown into the role of caregiver. What’s more, it’s real life to them, not just a short piece of fiction.