Fear of dementia has overtaken the fear of cancer as the top aging concern in America.
The worries are endless: memory loss… not recognizing family and friends… asking repetitive questions… feelings of helplessness and despair… and becoming a burden to loved ones.
A pioneering program from Indiana University has spawned a handful of similar efforts across the country — including one at UCLA — that address the unique concerns of dementia patients using a two-tiered approach: most help is provided not by a physician but a “care coordinator assistant”; and equal support is provided to the patient’s overburdened caregiver.
These programs are proving to be a revolutionary step in dementia care by providing a team of hands-on experts who surround patients and their families with a deep understanding of the maddening disease while offering unique coping skills.
The Aging Brain Care program, or ABC, was developed at the Indiana University School of Medicine by a team headed by Dr. Malaz Boustani, who says the program provides the golden ticket of healthcare: better care and better health at lower cost. It also seeks to reduce or eliminate the use of drugs that adversely affect physical and psychological health.
The secret to making the program both effective and affordable is the modestly-paid care coordinator assistant. And these coordinators, who provide 90% of the actual care, have proven far more popular than doctors.
“Patients and families feel much more comfortable with the care coordinator assistant than a physician,” says Boustani, who directs the Indiana University Center for Aging Research. “I’m a doctor, so I was completely blindsided by that.”
The distinction is key.
Instead of care offered by a high-powered and sometimes paternalistic M.D. — jokingly referred to by some as a “Medical Deity” — patients and caregivers bond more closely with a care coordinator whose only educational requirement may be a high school degree.
Yet it’s precisely this relationship that makes the program work.
Since these coordinators are paid just $15-20 an hour, they can spend far more time with patients and families — often at home.
“We spend quite a bit of time getting to know our patients,” says Lois Eldridge, 59, a care coordinator assistant holding a high school degree. “That session can turn into two or three hours.”
Care coordinator assistants meet with families and caregivers wherever it’s most comfortable and convenient: home, a physician’s office, even a Starbucks. This “mobile office” has proven critical to the program’s success.
“When we’re in the home we get a better picture of what’s going on,” says social worker Ebony Rich, who says caregiver frustrations, food insecurity and transportation woes become more apparent. “We gather a lot more information.”
Underpinning the ABC program is the assistance for overwhelmed family caregivers, who can become sick and hospitalized themselves when providing onerous round-the-clock care.
Marie Lebec (not her real name) was shocked when her husband was diagnosed with Alzheimer’s disease – and not her. Although his symptoms have become progressively worse – he nabs her purse and places strange items in their flower beds – Lebec says the resources offered by ABC and the Alzheimer’s Association have kept her sane in a vastly challenging situation.
“I can vent with her. I can ask her questions,” says Lebec. “She does help a lot.”
The caregiver training period takes between six to 12 months. They’re encouraged to take time for themselves — a minimum of eight hours in one stretch — become part of a social network, and attend a caregiver support group at least once monthly. Caregivers also work closely with care coordinators to create a crisis plan.
Repeated questions, for example, are often maddening.
“That’s simply a signal of unmet needs” such as pain, boredom, hunger, distrust or anxiety, insists Boustani. “We make you see it as an actual communication strategy and not a burden.”
And by caring for caregivers, patients improve.
“If we do that successfully, that will help reduce the stress (of patients) more than any other drug,” says Boustani, winner of the 2012 Outstanding Scientific Achievement for Clinical Investigation award from the American Geriatrics Society. “After one year of being in our program we will reduce that burden by 90%.”
After modest beginnings serving just 200 patients, ABC won an innovation award from the national Centers for Medicare & Medicaid Services, which then vaulted its patient load to 2,000.
Since 2008 and the opening of the Healthy Aging Brain Center — now part of county-operated Eskenazi Health Center which targets vulnerable populations in Marion County — ABC has helped nearly 1,000 patients with dementia and 2,000 with mild cognitive impairment. It continues to treat 400 dementia patients each year.
UCLA’s Alzheimer’s and Dementia Care Program borrowed many of ABC’s attributes, with two major differences: it focuses solely on dementia patients (Alzheimer’s disease in its most pernicious form) and has retained nurse practitioners with specialized two-year degrees as its liaison with families.
Dr. David Reuben, who heads UCLA’s effort, said ABC “was an inspiration and we adopted many of its components” but that the skills and training of higher-paid nurse practitioners are essential to the program’s success.
“We opted to preserve those clinical skills,” says Reuben. “There’s some very complicated decision-making that has to go on.”
Called dementia care managers, these nurse practitioners are the primary contacts with patients and their caregivers. Still — with a bow to ABC — UCLA has added assistants who largely interact with more stable patients and their caregivers by phone.
The program has tallied marked improvements.
At entry, only about a third of caregivers knew where to seek answers for dementia. Afterwards, 94% felt supported by the program and 92% would recommend it to others. While 13% suffered from depression, caregiver depression dropped 22%.
The program also encourages creative solutions.
In one instance, a former hospital ward supervisor suffering from “sundowning” — the confusion and agitation that worsens in the late afternoon and evening — joined the UCLA dementia program. The patient was already taking Seroquel for her symptoms, but Reuben instead recommended a completely different solution.
Boustani and Reuben emphasize the critical importance of reducing both prescription and non-prescription drugs, including anticholinergics, which block neurotransmitters.
And while neither program on its own can reverse cognitive decline, clearing the haze of drug interactions and bad medicine helps.
“If you are cognitively getting worse because of taking Benadryl, your condition will improve,” says Boustani.
At the same time, both doctors emphasize strict adherence to drugs that treat other health conditions such as diabetes, high blood pressure and COPD.
“Most people don’t have only Alzheimer’s disease, but other chronic diseases,” says Boustani. “Within 12 months, 60% (of patients) have at least half of their symptoms gone.”
Always with an eye on costs, Boustani says net cost savings are estimated up to $2,600 per patient each year.
These new dementia care programs are helping on all fronts: better care, improved outcomes, and lower cost.
“We move from hopeless,” says Boustani, “to an amazing problem-solver.”