Alzheimer’s disease slowly robs sufferers of one ability after the next. Eventually, every one of the 5.4 million Americans with Alzheimer’s disease will need a caregiver, and many of the people who step in will be unpaid family members.According to the Alzheimer’s Association’s 2016 report, more than 15 million Americans care for a loved one with dementia with no monetary benefit to themselves.
Of course, caring for a family member comes with rewards of its own. Caregivers get the reassurance of knowing their family member’s needs are being met as well as more time to share with a person they love.However, the road ahead is a difficult one, and it’s important that new caregivers understand how and when to step in.
About Alzheimer’s Disease
Alzheimer’s disease is the most common form of dementia, a decline in cognitive abilities including reasoning, attention, memory, and language skills. Eventually, people with dementia may lose the ability to perform the daily functions of life. Unlike some forms of dementia, Alzheimer’s disease is incurable and irreversible, and the progressive brain degeneration leads to death an average of eight years after diagnosis. According to the Centers for Disease Control and Prevention, Alzheimer’s disease is the sixth-leading cause of death in the U.S.
Mild Alzheimer’s disease is marked by forgetfulness, reduced attention, and emotional withdrawal. During this stage, people with the disease can usually live independently but often need help with household tasks like managing finances and grocery shopping.
According to the Fisher Center for Alzheimer’s Research Foundation, mild Alzheimer’s lasts for an average of two years before progressing to the moderate stage of the disease. It’s during moderate Alzheimer’s disease that live-in help becomes necessary. Patients need help with routine tasks like choosing clothing and preparing meals, frequently become confused or irritable, and may begin to wander or experience delusions.
As the disease evolves into moderately severe Alzheimer’s, patients need assistance dressing, bathing, and toileting. They experience emotional outbursts and begin to struggle to express themselves. Finally, in the disease’s last stage, patients require around-the-clock care and gradually lose the ability to speak and walk.
Preparing for Caregiving
To meet the evolving demands of Alzheimer’s disease, family members must start preparing before live-in help becomes necessary. They must decide whether their relative will move in with them or if they will relocate to the loved one’s home. This guide from Redfin offers some ideas on necessary home modifications to keep the house safe for an Alzheimer’s patient.
Since confusion manifests early in the disease, caregivers should label cabinets and drawers with pictures of their contents and add nightlights in bedrooms, hallways, and bathroom to aid with nighttime bathroom trips. If the patient’s bedroom is on an upper story, moving it to a first-floor room with easy access to a bathroom combats both incontinence and accidental falls. Likewise, caregivers should add accessibility features like a ramped entryway, non-slip bathroom flooring, and clear walkways to eliminate trip and fall hazards. In the kitchen, oven knobs should be removed and sharp items and hazardous chemicals stored out of reach to prevent accidents, while functioning smoke detectors and fire extinguishers serve as essential backups. Finally, a home security system with door alerts safeguards against wandering Alzheimer’s patients.
While this advice will prepare family caregivers for many of the practical realities of living with a person with Alzheimer’s disease, it doesn’t address the emotional demands of caregiving. Caring for loved ones whose needs grow as their ability to show gratitude diminishes isn’t an easy job, and it’s important for caregivers to find a support system before they begin the journey. Support groups, respite care, and personal stress management are just as important to any care plan as the caregiving itself.
By June Duncan
Author – Rise Up for Caregivers