July 8, 2013 – When Perry Nydigger's wife, Sharon,was diagnosed with Alzheimer's disease in 2007, doctors wrote her two prescriptions for drugs meant to slow the progression of the disease – and that was it.
According to Nydigger, the family received no counseling or information about their options for Sharon's care, and arriving at a treatment plan that worked took years of trial and error.
First, Sharon went to a skilled nursing facility where she became angry and violent, uncharacteristically so – “my wife was the sweetest, nicest woman you could ever meet” – and was eventually asked to move. From there she went to a private psychiatric facility in the Portland area, where her symptoms worsened and began to include incontinence – and she also stopped walking and talking. Doctors began to recommend she move to the Oregon State Hospital, until one of Nydigger's daughters did some research and decided to try in-home care and drastically reduce her medications.
Finally, Sharon moved in with her daughter, Cindy, in Puyallup, with her son-in-law acting as a full-time caregiver and Perry driving up every other week from his Albany home to assist.
Where finding an appropriate course of treatment hamstrung the Nydiggers, Clare Agner, whose husband, Bob, passed away in January after being diagnosed with Alzheimer's, had trouble getting a diagnosis in the first place.
“I was on the phone with his doctor virtually every week,” Agner said, airing concerns about Bob's unusual behavior – he would put things away in the wrong place and say bizarre things he couldn't later recall – but his primary care provider was not concerned, due in part to Bob's young age. He was just 57, but after a few months of routine phone calls and brief primary care visits during which he seemed relatively normal and high functioning, the primary care provider finally suggested that he see a neurologist.
There, too, Agner said, finding out what Bob's options were wasn’t easy. The couple visited a second neurologist at Oregon Health & Science University who told the couple that Bob wasn’t eligible for any clinical trials, that most of the medications available for dementia didn't seem to work well – and ended the visit recommending that he see a neurologist on an annual basis -- but nothing more.
A nurse caught the couple on their way out the door and asked if they had been connected with the resources they needed. When they said no, she recommended a class, which they both attended, though it was actually intended only for caregivers. That class graphically described the process of an Alzheimer patient's decline and death, upsetting Bob greatly.
“My husband didn't need to hear any of that. It was totally inconsiderate, overwhelming, and he was like, 'We're out,'” Agner said, adding that she also struggled to find information that would help her figure out how to restructure her day-to-day life as Bob's functioning declined. “Did I want somebody to spoon feed me information? Hell yes. I needed it in small portions. I didn't need the whole picture. To get connected to the right information seemed absolutely, totally impossible,” Agner said.
First steps
Stories like these are not uncommon, according to Dr. Elizabeth Eckstrom, who runs OHSU's Geriatric Education Center.
“We aren't screening people, and we aren't training providers to care very well for people with dementia,” she said.
Doctors get precious little education about aging issues, including dementia, during the course of their education – despite the fact that most doctors care for older patients but are reluctant to screen for diseases like Alzheimer's, with no known cure and few good treatments.
“There's still not very good evidence that screening impacts the disease because we don't have good treatments to cure dementia yet. That gives doctors a lot of pause because as providers we tend to want to find things that we can fix or make better,” Eckstrom said.
In addition, the little time doctors spend with their patients during a routine visit makes it hard to get a good picture of what's going on in their day-to-day world – so discussions with family members, followed by neurological imaging, may be more useful than memory tests.
In addition, providers often don't know what resources are available, said Pamela Mottola, client services manager for the Alzheimer's Association. People often assume that an Alzheimer's diagnosis automatically means the patient needs to be moved to a nursing home, but the illness is so variable and unpredictable that the course of treatment should be determined by an individual patient's needs, she said.
“People are diagnosed with Alzheimer's that still work, that still drive,” Mottola said. In-home care may be appropriate for one patient, while an assisted living facility or skilled nursing home may be more appropriate for another – but providers are unfamiliar with the landscape of aging care.
Help for providers
Eckstrom and Mottola have been working to teach providers more about Alzheimer's disease and other forms of dementia, which currently affect one in every three seniors in the U.S. – and the disease's impact is expected to spiral as the baby boom generation ages. They held a conference for providers in May, and have produced a pamphlet for doctors' offices to advise patients about their options and suggest resources. They're also publicizing the national, 24-7 Alzheimer's Association hotline, which takes calls from patients and providers alike, and which sends information from calls to Alzheimer's Associations in each state so they can follow up.
But still, planning good care requires making sure patients get the right diagnosis, early on, as well as appropriate follow-up.
The frequent failure to do so is rooted in the way the medical system is set up, Eckstrom said. Medical schools rarely require students to spend much time caring for elderly patients, and Medicare reimbursement is so low that many doctors are unwilling to take care of elderly patients.
“If I have a patient with dementia who's new to me, I spend on average, four hours working with that patient for the first visit,” said Eckstrom, whose office receives grant funding to supplement its work. “No doctor [in private practice] can afford that.”
Eckstrom is cautiously optimistic about the transformation efforts to create coordinated care teams to help patients better navigate the system, including community resources – changes she considers well overdue and critical.
“This is a huge question that is going to hit the state, is going to hit the health systems, like a lead balloon if we don't make some dramatic changes pretty quickly,” Eckstrom said.
Nydigger said Sharon's mood and behavior have vastly improved since she moved back in with her family: she is speaking again, though she isn't always coherent, and doesn't usually recognize her family, but her behavioral problems have almost completely ceased.
After speaking with another family affected by Alzheimer's, the family decided to eliminate the majority of Sharon's medications. She takes a single mood-regulating medication twice a day, and a sleeping pill at night, but is walking and talking again and is rarely angry anymore, leaving Nydigger to wonder if her prior course of meds did more harm than good.
Agner said her experience – including the lack of communication between her husband's providers – left her “flabbergasted” and convinced her to change the way Alzheimer's patients of all ages are treated.
Apart from coordinated care efforts, Eckstrom isn't aware of any impending policy changes that might change doctors' ability to recognize and respond to patients with Alzheimer's disease.
“I think some of the things that we're starting to do are steps in the right direction, but we have to cross the Grand Canyon, and we've barely walked a foot,” Eckstrom said.
TO LEARN MORE
To reach the 24-7 Alzheimer's Association help line, call 1.800.272.3900.
Image for this story courtesy of the World Bank Photo Collection (CC BY-NC-ND 2.0) via Flickr.
Christen McCurdy can be reached at [email protected].
