A new survey, Alzheimer's Diseae in America 2019 (Health Union, Philadelphia, PA), finds types of care provided for individuals with Alzheimer's Disease (AD) varies with the stage of disease. Caregivers report that as AD progresses through 3 stages, the care they provide to their loved ones with AD changes. In the survey, 181 current caregivers portray experiences of people living with or affected by AD.
Caregivers of individuals with moderate-stage AD are acutely focused on managing medical care. A large percentage of these caregivers provide various types of support, such as transportation to and from healthcare provider (HCP) appointments (89%), helping to coordinate medical appointments (89%), and helping to manage or administer treatments (87%).
According to the survey, caregivers for individuals with a severe form of AD help the individual complete day-to-day tasks because a greater number of motor, cognitive, and emotional symptoms. These caregivers were more likely than others to say they care for individuals who experience fatigue, trouble walking, confusion, problems finding words, and overall personality changes.
Caregivers of individuals with a severe form of AD also have more difficult conversations with HCPs about residential facilities, a living will or advanced directives, palliative care, and end-of-life care.
Nearly 50% of the caregivers who responded represent individuals with moderate (middle stage) AD; more than 25% represent individuals with severe (late stage) AD; and more than 10% represent those with a mild (early stage) form of the disease. The remaining 15% were uncertain about the individual’s current stage.
“The role of care partners is always important in the patient journey and, in many ways, more so for AD,” said Olivier Chateau, co-founder and CEO, Health Union. “AlzheimersDisease.net and the Alzheimer’s Disease In America findings highlight the challenges associated with the progressive nature of AD and symptoms, such as dementia, that can be associated with AD or a separate issue.”
According to the survey, caregivers for mild forms of AD need general information about living with the condition. At this stage, caregivers deal with the stresses of caring for a person who is starting to experience memory lapses. Those caregivers must manage symptoms and encourage healthy habits.
Alexis Dallara-Marsh, MD
James Geyer, MD, and Paul Cox
Marwa Kaisey, MD, and Nancy L. Sicotte MD, FAAN