Every post on AlzConnected, a message board for individuals caring for loved ones with Alzheimer’s and dementia, is heartfelt and authentic. (Is it normal for an Alzheimer’s patient to wave to himself in the mirror? What’s the best way to handle fantastical delusions? Is there a checklist for keeping the household environments safe for a dementia patient? I need to vent a little; I am mentally and physically exhausted and it seems like I have rarely had a moment to myself in years.)
The board, created by the Alzheimer’s Association and part of a platform to provide support around the disease and the people it affects, has thousands of posts. Some come from spouses and family members of the newly diagnosed, others are questions about various stages of memory loss, and still others are requests for guidance on navigating memory care or how to care for themselves while caring for someone else. These are people experiencing the enormous changes Alzheimer’s and dementia undoubtedly have on patients and their families. And, for those who’ve never experienced a diagnosis like dementia or Alzheimer’s, there’s no real way to know what they don’t know and what lies ahead until they’re living it every day.
Currently, more than 6 million Americans are living with Alzheimer’s disease. By 2050, that number is anticipated to reach 13 million. The amount of invisible and often unpaid work involved in managing and caring for that population is tremendous. In fact, the Alzheimer’s Association reports that in 2022 alone, an estimated total of 18 billion hours (valued at about $339.5 billion) were spent by unpaid individuals caring for loved ones. Spouses, children, friends and family members tasked with caring for a loved one often struggle to build their own network of support.
The invisible work of caregiving
Caregivers are often managing their own lives on top of their loved one’s dementia or Alzheimer’s care. This rings especially true for adult children, who might still have children of their own to raise and care for on top of a career. The National Alliance for Caregiving (NAC) and AARP reported in 2020 that roughly 61% of caregivers have jobs and 45% stated they’ve experienced the financial impacts of being a caregiver. Twenty-four percent of the survey respondents said they’re caring for more than one person, while 24% say their own health has declined since taking on the care of their loved one.
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