After sustaining years of head-on collisions playing America’s billion-dollar pastime, a growing number of former NFL players are being diagnosed with chronic traumatic encephalopathy (CTE) — a result of concussions from head-banging. And memory care providers are taking note, with one former NFL player creating the first sports-themed memory care community that is slated to open in January.
But, can today’s memory care model meet the needs of a new type of memory care patient — one who is often younger and stronger that the average resident with dementia or Alzheimer’s disease?
CTE is a progressive degenerative disease of the brain found in athletes, and others, with a history of repetitive brain trauma, including symptomatic concussions as well as asymptomatic subconcussive hits to the head, according to Boston University’s CTE Center. The disease generally manifests with standard symptoms of dementia, of memory impairment, aggressive behavior, cognitive issues, depression and general confusion being the most prominent. CTE can also lead to motor disturbances.
And with more players showing signs of CTE, including those as young as 40, the demand for specialized CTE care is rising, providers say. The NFL did not return requests for comment by press time.
NFL-Tailored Memory Care
While Tom Herter might be best known as a Super Bowl XVII champ, former coach of the New England Patriots, and arena football league owner, his most recent endeavor includes the founding of All Sports Memory Care Center. Herter also serves as Director for NFLPA Retired Players Orlando.
The first of 32 memory care communities slated to open nationwide under the All Sports Memory Care Center name will be in Palm Bay, Fla. That community will have 72 assisted living units and 48 memory care units.
Staff will have undergone specialized training to work with the CTE-impacted demographic.
“We need to build a memory care center for NFL athletes that gives them the dignity and respect they deserve,” Herter says about the impetus for creating a specialized memory care product for this emerging population. “When I was visiting [other] memory care facilities I noticed a lot of things that didn’t pertain to what I had in mind for a former NFL player. An activity center that has a bingo hall isn’t going to cut it for my guys. And, if you’re the only NFL guy in a community, then there’s no one to relate to.”
The new All Sports Memory Care will feature an indoor 40-yard football field. The field is meant to not only connect players to the sport they love and likely have played since they were young, but to also be a draw for visiting children and grandchildren. In addition, some hallways leading to the field have been designed like tunnels to recreate the experience of going from the locker room to the field — a pleasant memory for many, he says.
Herter points to the recent lawsuit filed by about 4,500 former NFL players against the NFL for concussion-related injuries received while playing as an example of the growing demand for CTE-specialized memory care. Earlier this year a federal judge approved a settlement for that lawsuit with a total payout of more than $870 million, media report.
All Sports Memory Care communities are planned to open in cities with an NFL franchise, Herter says.
These communities are also designed for veterans affiliated with the Wounded Warriors Project, a military and veterans charity, and former athletes from other sports, he said, noting that activity centers will be tailored to fit the needs of each community. For example, a community comprised mostly of former basketball players will feature a court rather than a football field.
A Growing Need
While less focused on athletes, other memory care providers are also preparing for a surge of former NFL players and other athletes who are facing memory impairment.
“We have seen a dramatic increase over the past 24 months in former players seeking support from Silverado communities and our at-home care team,” says Randy Platt, Silverado’s senior vice president of operations for Hospice & At Home.
Silverado – which offers memory care, at home care, and hospice services – became the NFL’s preferred memory care assisted living provider in 2008. Silverado also provides private-duty home care to former NFL players.
While Silverado declined to comment on the number of former players it serves, one such former NFL great in a Silverado community is Mike Pyle, former Bears center, who currently resides at the Silverado Memory Care Community in Highland Park, Ill. Pyle played nine seasons between 1961 and 1969 for the Chicago Bears.
Pyle, 75, has been told he has CTE, but researchers at Boston University’s CTE Center note that currently the only way to confirm a diagnosis of CTE is after death by postmortem neuropathological analysis.
His wife, Candy Pyle, says she saw signs of mental and personality changes in her husband for nearly a decade, but it was last fall when she could no longer care for him and he moved into a Silverado community, she told local media earlier this year.
For many former players seeking memory care services, the NFL’s 88 Plan program helps to ease the financial burden of dementia care. Named for pro football hall of famer and NFLPA legend John Mackey, the 88 Plan provides retired players with financial assistance for medical and custodial care resulting from dementia.
“We’ve seen players in their early 40s and also into their later 70s,” Platt says. “The age span is much broader. We also are aware of players who are developing disease patterns even younger than that. While several former players have become residents within Silverado communities, several tend to be younger or looking to maintain personal independence. Many chose to live at home with support from a Silverado personal attendant, as well as ongoing support from a Silverado Life Care Manager.”
A Different Pathology
While research shows that those diagnosed with CTE exhibit many of the same behavior characteristics as someone with Alzheimer’s, providers say there are also profound differences to consider that impact both diagnosis and staff training.
The symptoms of CTE generally present earlier, such as in one’s 40s, than those of Alzheimer’s disease, such as in one’s 60s, according to Boston University’s CTE Center. The initial and most central symptoms in Alzheimer’s involve memory problems, while the first symptoms of CTE generally involve problems with judgment, reasoning, problem solving, impulse control, and aggression.
“One of the keys to our facilities is that our management company, operated by InspiredLiving [owned and operated by Validus Senior Living], is experienced handling athletes,” Heter says, adding that All Sports Memory Care has partnered with New Hope Memory Care Foundation. And partnerships with Living Heart Foundation and Andrews Institute for Orthopaedics & Sports Medicine are in the works to create a wellness center and oversee rehabilitation services, respectively.
While increased research and media coverage of CTE is helping health care providers diagnose the disease earlier, it’s still easy to misdiagnose, says Joseph Jasmon, COO of The LaSalle Group, Inc. The LaSalle Group designs, develops, builds, manages and owns 35 Autumn Leaves Memory Care Assisted Living communities nationwide.
Two former NFL players currently reside in Autumn Leaves communities, and Autumn Leaves has cared for former athletes from a variety of sports in the past as well.
“It becomes confused with PTSD or frontotemporal dementia,” Jasmon says. “Now more players are talking about it openly. And some players have committed suicide, while making sure their brains would be able to be used for CTE research.”
The brain tissue of 59 of 62 deceased former NFL players studied by Boston University’s CTE Center have been positive for CTE, according to the center’s website.
While increased education of CTE is crucial to being best positioned to care for this population, this demographic also brings something new to the job for many caretakers: size.
“Patients with CTE are often strong,” Jasmon says, noting the physical demands of sports such as football. “They can be difficult to care for if they’re agitated, exhibiting rage or outbursts. With the traditional dementia patient, you try to redirect him and get him focused on something else. But with [the CTE resident] that usually doesn’t work.”
While Jasmon admits the characteristics of those with CTE would make a dedicated community to this population more difficult to manage than the average memory care community, the biggest challenge right now is early stage assessment.
“The unfortunate part about it is that there aren’t a lot of people good at that early stage assessment,” Jasmon says. “We need to do a better job of that. It’s really going to take the entire senior living family to jump on top of this early. The [former players] will have a much better quality of life if diagnosed sooner than later.”
Written by Cassandra Dowell