A recent PublicSource/Spotlight PA investigation found that experts “and advocates give the state a near-failing grade in its efforts to prepare for the coming crisis in dementia care. … An official state action plan has sputtered for years, high costs could push families and facilities to the brink, and those serving on an unfunded state task force concede time is running out — and fast.” Spotlight PA is a nonpartisan newsroom powered by The Philadelphia Inquirer; its partners include LNP Media Group. PublicSource is a nonprofit digital-first news organization.
Anyone who has a loved one with dementia knows all too well the suffering involved. The anguish of seeing a once-capable person struggle with daily and once-simple tasks and routines. The gradual loss of recognition of even the most familiar faces. The quiet that replaces the conversation that once came easily. The relationships that are still infused with love but are irreparably altered.
If you have a family member with dementia, you also know how difficult it can be to find services for your loved one that are both affordable and excellent.
As Jennifer Holcomb, the chair of the task force established by Wolf, told PublicSource/Spotlight PA, “The problem is now. It’s today. It’s not coming, it’s here.”
It was tough on Pennsylvanians with dementia when senior day care centers were necessarily closed as part of the state lockdown; those seniors they didn’t receive the daily cognitive stimulation they needed. But the problem goes wider and deeper than the pandemic, and has much to do with this state’s lack of sufficient funding for senior care. While Gov. Wolf, a Democrat, said last month that he supports greater investment in such care in this rapidly aging commonwealth, the Republican-controlled Legislature would have to find the money for such investment through the budget process.
“Despite older voters being a highly sought after constituency by both parties, legislative support hasn’t been a guarantee,” Spotlight PA reported in a follow-up article. “In 2012, a bill that would have kick-started the state’s readiness plan failed to earn majority support, in part because it included unrelated regulations on the indoor tanning industry that drew opposition. Then-Gov. Tom Corbett single-handedly launched the planning process months later by executive order.
“Overall, advocates say meaningful dementia-related legislation remains a rarity in Pennsylvania, with offerings traditionally focused more on raising public awareness than addressing public policy failures.”
In 2021, we’re not lacking in awareness. Nearly everyone knows someone who is living with dementia or is caring for someone with dementia.
Here are the facts, as reported by PublicSource/Spotlight PA in its excellent investigation:
— The task force charged with overseeing implementation of the state’s plan for dementia care has no money.
— There are 280,000 Pennsylvanians over age 64 currently living with Alzheimer’s disease, the most common cause of dementia, and another 100,000 with related disorders.
— That Alzheimer’s figure alone is expected to reach 320,000 by 2025 and increase exponentially as the baby boomer generation continues to age.
— Too few state-licensed eldercare facilities have dementia-specific accommodations. Less than a third of licensed personal care homes and assisted living facilities in Pennsylvania have dedicated dementia units. And less than a fourth of the state’s separately licensed skilled nursing facilities have “Alzheimer’s disease beds.”
— There are too few specialists in geriatric care, and too few trained staff members working in long-term care.
— Those who can’t afford long-term care on their own can apply for coverage through Pennsylvania’s Medicaid program. “Roughly 85% of nursing facility services in Pennsylvania are paid for by the state’s Medicaid program, per the state Department of Human Services. Pennsylvania spent nearly $33 billion on the program in 2019, with the federal government covering more than half the cost.” Medicare does not cover most long-term care needs.
As Alison Lynn, a social worker at Philadelphia’s Penn Memory Center, told PublicSource/Spotlight PA, those who earn too much to qualify for Medicaid and too little to pay for quality long-term care are caught in a particular bind. And they desperately need help.
Long-term care facilities with memory care programs are expensive. AARP cites a 2018 survey that found that assisted living, on average, costs $4,000 a month. Memory care adds another $1,000 to $4,000 a month, Megan Carnarius, a registered nurse and memory care consultant, told AARP.
But providing dementia care in the home tends to be all-consuming – people with dementia tend to wander, so need careful supervision – and often lonely.
As Spotlight PA reported, President Joe Biden wants to invest $400 billion into home care programs, but that plan is up in the air. “In Pennsylvania, Democratic lawmakers said efforts to address the state’s looming dementia care crisis could also be funded by a rare state budget surplus buoyed by a windfall of federal COVID-19 relief money that has been mostly squirreled away by Republican leaders,” that newsroom noted.
According to Spotlight PA, roughly $315 million “was earmarked for nursing homes, assisted living communities, and personal care homes in this year’s budget — $282 million from the state’s $7.29 billion share of federal American Rescue Plan money.”
But Wolf, who signed the budget into law, and state Sen. Maria Collett, D-Montgomery County, a former long-term care nurse and minority chair of the state Senate’s Aging & Youth Committee, said that amount was insufficient. “To ignore the lack of support for people with dementia and the facilities that provide their treatment and care as we make these allocations is unconscionable,” Collett said.
House GOP spokesperson Jason Gottesman said Republicans’ “prudent” approach to spending Pennsylvania’s stimulus funding was a shield against future economic turbulence.
But turbulence already besets the lives of Pennsylvanians with dementia, and extends to the lives of their loved ones.
According to the Pennsylvania State Data Center at Penn State Harrisburg, the commonwealth ranked fifth among the 50 states by “the sheer size” of its population ages 65 and over, and seventh by percentage, in 2017. State funding for dementia care should be commensurate with the size of the commonwealth’s aging population.
As PublicSource/Spotlight PA reported, Pennsylvania’s dementia crisis is not in the distant future. It’s upon us. The commonwealth’s senior citizens deserve to see some urgency on the part of state lawmakers.