Whether you’re new to caregiving or a veteran, there are still things to learn about the Canadian healthcare system. This series of videos from Alz Live provides a roadmap. This is part six of an eight part series.
For people with Alzheimer’s and dementia who are admitted to hospital, understanding diagnosis and treatment options, as well as investigating and accessing available supports, can be overwhelming.
Once they get home, when symptoms change (increased memory loss, decreased physical independence, for example) and needs escalate (for day programs, respite care, personal support workers, etc.), getting help becomes more time consuming and critical.
Finding those supports early has a positive impact not only on quality of life, but on longevity. So when it comes to helping patients maneuver through the processes, who comes to the rescue? A relatively new field called professional patient care navigators.
They work to reduce barriers—language, cultural, financial, knowledge-based, or emotional—to getting those supports. They are now, in Canada as well as the U.S., a key part of cancer care. They are also starting to be introduced for other chronic issues, and, in some jurisdictions, finally, dementia care too.
Why were patient care navigators introduced?
This role first appeared in 1990 in a pilot program at Harlem Hospital. Those non-medical professionals helped coordinate appointments and make sure patients kept them; they directed patients to financial assistance and communicated with medical staff on behalf of patients. Between 1995 and 2000, the five-year survival rate for patients in the program nearly doubled.
Sometimes also called “health care navigators,” these workers are trained in various fields—medical doctors, nurses and social workers are the most common.
While it might be easy to assume these services are simply a luxury that a stretched and underfunded public health care system can’t afford, research proves navigators cut costs and save lives.
Here’s a look at the two different types and what they can do for you.
Hospital-based Patient Care Navigators
“The British Columbia ministry of health has guidelines for patients 70 years or older admitted to hospital emergency,” says Linda Schwartz, a Clinical Nurse Specialist in Elder Care at Providence Health Care. “There needs to be an immediate screening of areas where people can be vulnerable: mobility, nutrition and hydration, bowel and bladder function.”
Providence Health Care, which includes 16 hospitals, clinics and residential facilities in British Columbia, serves “populations of emphasis.” Those groups include people with chronic illness—heart, lung and kidney disease, AIDS, mental illness and “urban health issues” (described as homelessness, addiction and malnutrition) and older British Columbians.
“Often older patients who come to hospital have multiple health issues,” says Schwartz. She calls them “geriatric giants”—ongoing conditions like heart disease, diabetes, incontinence. “And dementia is a big diagnosis among this group.
It’s wonderful to have a geriatric unit in a hospital, but we end up giving Cadillac service to 17 or 20 patients, and what happens to the rest?
“Emergency departments are one of the least friendly environments for older dementia patients. Things happen quickly and people must be triaged and moved along fast. For dementia patients, that’s not ideal,” says Schwartz. In fact, those conditions can exacerbate, and sometimes cause, hallucinations, hysteria and disorientation.
“What we’ve done, and in Ontario they are quite advanced in this as well, is introduce a nurse with specialized geriatric knowledge to the emergency department,” says Schwartz.
St. Paul’s Hospital has a geriatric consult team and both St. Paul’s and St. Joseph’s Hospital (two of Providence Health Care’s sites) have elder care clinics staffed by geriatricians and social workers, occupational and physical therapists, dieticians, and others.
“We have a lot of positions dedicated to providing geriatric expertise,” says Schwartz. It’s the geriatric nurse, the first point of contact, who acts as patient care navigator for people coming into emergency. “She alerts the consult team, and the team may consult the clinic for follow up if required.”
In Canada, that kind of consult team is unique to Providence Health Care, although the model is common in the U.S. and there are some in Europe as well.
“It’s wonderful to have a geriatric unit in a hospital, but we end up giving Cadillac service to 17 or 20 patients [the maximum the clinic accommodates], and what happens to the rest?” asks Schwartz.
“We really are trying to make sure older people who come here don’t fall through the cracks and I have to say it’s still challenging,” she adds. “I think we’re doing really, really good work, but there’s more to do.”
Out-patient Patient Care Navigators
Laura Burchell is a registered nurse with a BA in gerontology. For the past three years, she has been theGeriatric Care Navigator at Dartmouth General Hospital in Nova Scotia.
Emergency departments are one of the least friendly environments for older dementia patients.
The program was introduced six years ago as part of a government-funded pilot project. Since then, the funding has been cut and the hospital covers all costs, so Burchell is now the only navigator on the team.
She serves people in the Dartmouth area who are over 65 and have some element of frailty (cognitive impairment, chronic illness, mobility issues, for example) that make living independently difficult or impossible. Many of the people she sees are living with dementia.
“As I see it, the role of the navigator is to do a thorough assessment of frail elderly to determine resources and services that can be put in place to maintain independence at home, and healthy living in general, for as long as they choose,” says Burchell.
That goal is not only good for the patient, it’s good for our health care system: If people are admitted to hospital, but can’t return home after treatment, discharge can be delayed. That means longer wait times for others who need the acute care hospital bed. It’s also more expensive to “house” people in hospitals than to get them into a long-term care facility or to provide assistance in their own home.
Burchell’s patients don’t need a referral from a doctor. Patients or their caregivers can apply online to have an assessment. Burchell receives these requests and triages them, prioritizing patients based on their description of their situation.
She spends a large part of her workday in her car, visiting people in their homes where she conducts cognitive testing, mobility and functional assessments and home safety evaluations. But first there is conversation.
“We’re not bound by a certain amount of time for each visit. We just sit and have a chat,” she says. “I find with seniors they like to tell their stories. Seniors put on that very stoic mask, but as they tell stories, you garner insight into the true nature of the difficulties they are having.”
The mini mental status exam is the test she administers most often, “just to create a baseline of functioning,” says Burchell.
What Happens Next
Some patients have already been diagnosed with dementia, but circumstances have changed. For example, she has patients who have been on a waiting list for a long-term care bed, and as their physical condition has deteriorated as months passed, their situation has become dire.
“I help them link with the care coordinator for another assessment,” says Burchell. “Maybe mom can be bumped up the list if she becomes an urgent placement.” In cases where that’s not possible, Burchell can connect with local health authorities to get the patient reassessed with an eye to qualifying for more government-funded in-home care.
After Burchell’s assessments are done, she forwards her findings to the patient’s primary care physician. If follow-up is needed—a referral to a geriatrician, physiotherapist or other specialist, for example—the doctor does that. Even if no follow-up is recommended, Burchell’s findings can help the physician.
“Family doctors used to have time to see the whole picture, they did routine home visits to check in on patients, and now they don’t,” she says. “I’m their eyes. They may think life is rosy for Ms. Smith, but often it isn’t.”
For her patients with dementia, the caregiver is often present at assessments and much of the help Burchell sources is directed at them. “We create coping strategies,” she says. “Maybe they don’t know what to do because mom wanders, so I help them come up with strategies so they can sleep at night.”
Such as? “Sensors on the doors, for example. People don’t realize that’s an option.” She’s spent many hours educating people on various safety alerts not only for appliances and falls, but for medication dispensers, too, all of which are protection that help a person living with dementia stay safely at home.
Burchell doesn’t remember how many clients she’s seen since she started this job, and when it comes to the number of referral forms waiting for her to triage, all she’s sure of is that “there are more than I can count.”