TikTok and dementia

Services and support for elderly care are limited in the United States. With block grants often redirected to programs that state officials deem more critical, elders suffer needlessly. The U.S. is a throw-away society, where people are disposed of—in long-term care facilities run by investment bankers—as quickly as we dispose of unwanted belongings.

Limited care is even more common for people who have dementia. One of the questions becomes, who cares for people with dementia? Where are the care workers from? How much do they get paid? How are they treated? Recently, on TikTok, people who are caregivers for others, often family members, have been sharing their stories.

Check out the NPR story that dives into this issue, explaining, "On TikTok, the #dementia tag has 3 billion views. Caregivers for people with dementia have been flocking to the site. They're posting their experiences and finding support in the videos of others who understand. They're using the social media platform to show what dementia looks like and share the problems, burdens, and joys of being a caregiver."

Jacquleyn Revere began posting on @momofmymom to share her experience and find community and support. "The task of caring for people with dementia usually falls on family members. Every year, an estimated 16 million Americans provide more than 17 billion hours of unpaid care for family or friends suffering from Alzheimer's disease or other dementias, according to the CDC. About two-thirds of these caregivers are women."

"Here in the United States, unfortunately, there is not a very strong system of paid support for people with dementia," says Elena Portacolone, an associate professor who studies aging and cognitive impairment at UCSF's Institute for Health & Aging. "And so, the most common way of supporting persons with dementia is the daughter."

Do you know someone with dementia? Or a caregiver? Or are you perhaps anticipating needing this type of care?

This article from the Journal of the American Geriatrics Society asks, "How do we make comprehensive dementia care a benefit?"

This valuable overview of the politics contextualizing this issue makes significant points worth considering, "Given the evidence that comprehensive dementia care improves outcomes for persons living with dementia and their caregivers at a cost savings to Medicare, why isn't this care as widely available as magnetic resonance imaging or total knee arthroplasty or hemodialysis? Do we need more evidence, and if so, what kind of evidence would tip the balance? If clinical trial evidence is not sufficient, what other information do payers require to affirm the readiness of comprehensive dementia care as a healthcare benefit? What other information is necessary to facilitate widespread dissemination of this beneficial care model?"