Over 5 million people in the United States have Alzheimer’s disease. It’s the sixth leading overall cause of death and fifth for people over the age of 65 years. And while world-renowned scientists and researchers are working hard in the lab, there is no cure in sight nor are effective treatments at hand.
How we help
Right now, good care is the best treatment we have. And good care requires that caregivers – especially unpaid family members or friends – get the support, programs and assistance they need to provide the best care possible without jeopardizing their own health and well-being.
The job of a dementia caregiver is demanding and unrelenting. It also changes dramatically as the disease progresses. The early stage of the disease, while perhaps the least physically demanding, is an emotional roller coaster. Simply learning about the disease and grasping what the future holds is frightening. Planning for the inevitable and for the gradual loss of a mom, dad, spouse, a confidant or a best friend is hard to come to grips with. But creating a smart and realistic plan and being prepared financially, legally, physically and mentally is key to a caregiver’s survival.
A caregiver’s schedule
As the disease progresses, the demands on a family caregiver become more onerous. Taking over finances, keeping medical appointments, providing transportation, dealing with troubling behavior changes and creating a safe home environment are all part of a caregiver’s new reality. And even further into the diagnosis, when the ability to perform simple activities of daily living begins to fail, caregivers become responsible for feeding, bathing, dressing, toileting, pain management and ongoing physical care.
In the end, providing care for someone in end-stage Alzheimer’s will inevitably involve very tough decisions about nursing home placement, palliative care and end-of-life decisions.
The reality is Alzheimer’s and dementia have two victims, the person with the disease and the caregiver. Care providers all too often give up their careers, income, friends, free time and sacrifice their lives to look after a family member or friend. Studies show that they neglect their own health and often become ill themselves.
Speaking up for caregivers
No matter how tough minded, independent and strong they might be, caregivers cannot do this alone.
Sadly, today in our country, the absence of focus on care is a tragic omission. Caregivers need affordable homecare assistance, without which they are often forced to quit their jobs or prematurely place their family member in a long-term care facility at much greater cost to them and U.S. taxpayers.
Rational leave policies for family caregivers who take on the burden of caring are also essential. Funding for organizations that provide support groups, educational workshops, counseling and social work services must become a priority for government and philanthropic funders. As the Alzheimer’s epidemic grows, so too does the demand on caregivers.