ATLANTA -- Thousands of families with loved ones who have dementia have turned to senior care homes for help, and a new study from Georgia State University details the heavy financial toll that care in these facilities can place on those with the condition.

The paper, which was done in conjunction with researchers from the University of Washington and the University of California San Francisco, found that the median adult with dementia in residential facilities — such as assisted living centers — spent 97% of their monthly income on long-term care. In nursing homes, which can get Medicaid-support, people with dementia spent nearly 83% of their monthly income.

“Because dementia is such an expensive illness, it really is in a category of its own when we start to think about funding for long-term care,” said senior author Jalayne Arias, associate professor in the GSU School of Public Health. “Our study shows that if you compare people with dementia to their age-matched counterparts, they experience costs that are untenable to manage.”

The analysis found that the average monthly out-of-pocket fee was $3,090 for people in non-nursing home residential care such as assisted living facilities and $3,849 for people with dementia in nursing homes. Older adults without dementia paid roughly $2,801 for non-nursing home residential care and $2,176 for nursing home residents.

The paper, which analyzed data from a national sample of over 4,500 adults over 70, is said to be the first to compare out-of-pocket expenses by dementia status and care setting. It was published in the Journal of the American Medical Directors Association (JAMDA) in October.

As America’s population is aging rapidly and more individuals are turning to senior care as they enter this next stage of life, studies like this help to illuminate the financial burdens that are on the horizon, and aim to spur careful thought around solutions.

“We hear about this anecdotally, but to get confirmation of that from the data is really concerning,” said Jing Li, lead author and assistant professor of health economics at the University of Washington School of Pharmacy.

Last month the United States Senate Special Committee On Aging hosted a hearing to examine issues within the assisted living sector. A big focus was on the lack of transparency and information across an industry, as well as costs.

It is estimated, according to Sen. Robert Casey, Jr. (D-Pennsylvania), that one million Americans are currently living in 30,000 assisted living facilities across the United States. And they’re paying, on average, $54,000 per year. Noting there are hidden fees that can increase that amount, Casey shared a website that the committee had set for the public to submit their bills to help uncover the true cost.

“The tensions between social care and health care inherent, have spurred calls by scholars for assisted living to be reimagined,” Dr. Jennifer Craft Morgan, the director of The Gerontology Institute at Georgia State University said at the hearing.

While costs are a big issue, so too is care — and how the industry is regulated. Unlike nursing homes, which have federal regulations, assisted living and personal care homes are regulated by states. That oversight can produce mixed results.

Last month the AJC published an investigation highlighting problems with the state’s oversight of assisted living and personal care facilities and its lackluster enforcement of regulations. The story focused on Savannah Court of Lake Oconee, a Greensboro assisted living facility that received over 70 state violations since 2021, including cases involving the deaths of two residents.

In August, state regulators sent the facility a notice of revocation, but then entertained the idea of a settlement agreement. During these discussions, which pushed back the hearing date, a resident was sexually assaulted in October. A court date eventually commenced on Jan. 3, the day AJC’s investigation was published. Cross-examinations concluded on Feb 1, but a Judge has given the state and the facility until the end of March to submit written closing statements. A fact that advocates, and attorneys, say leaves seniors at the home in possibly dangerous living situations.

In 2020, following an Atlanta Journal-Constitution investigative series documenting similar inadequacies and accountability issues, the state passed a reform package to increase its fines and requirements of senior care facilities. Savannah Court’s high number of violations and the continued use of settlement agreements — which can couch penalties by breaking them up — raised questions about the state’s commitment, as well as its ability, to follow through with its promise to hold its 1,686 assisted living and personal care facilities accountable.