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Inside the world of dementia support workers

Inside the world of dementia support workers


As the demand for Alzheimer’s and dementia support workers grows, so will the development of dementia-specific training programs.

“Behavior is a form of communication.”

Esther Atemo, a public education coordinator, uses this statement to refocus a chatty class of 18 front-line health care workers.

A delicately commanding woman, Atemo asks if anyone can remember what the statement means. A shy silence fills the room and Atemo uses the pause to appeal directly to the students’ practical knowledge:

“How would you feel if you were late for an appointment and lost in an office building and people dismissed your behavior as aimless wandering? You are not wandering; you’re looking for something. A person with dementia is looking for something, and it’s your job to assist them through that particular experience.”

A student named Imelda, new to Canada from Vietnam, tells a story about a client with dementia who lined her oven with paper towel, mistaking it for aluminum foil. Imelda adds that the experience demonstrates the client has a purpose, but the delivery is confused. The thought is there, but the subsequent action is incongruous — a symptom of the disease.

These are snippets from a Dementia Care Training Program Class at The Alzheimer Society of Toronto. The $150, 12-hour training course is offered at various locations in the city and is geared toward personal support workers, nurses and other health care workers who are seeking to learn more about Alzheimer’s and dementia care specifics. AST has graduated 317 PSWs from the training program so far this year.

As the demand for Alzheimer’s and dementia support workers grows, so will dementia-specific training programs. PSWs make up 70 to 80 percent of our home-care workforce and that number may rise as more data on caregiver burnout — due to stress, isolation, and exhaustion — is collected.

Much of the caregiver burden falls to family members, often seniors. Eventually, they will hire PSWs to help with house cleaning and companionship to personal grooming and medication.

In 2013, the Ontario Ministry of Finance pledged “three million more personal support worker hours over the next three years”— a sign that the provincial government is beginning to realize that the longer a person can be cared for at home, the easier the burden on our health-care system.

One result of Ontario’s Seniors Care Strategy: Fleming College’s Personal Support Worker program received funding to purchase special simulation equipment for its Home Lab, including simulation mannequins, an oral hygiene demonstration set, nutrition and simulated food items for dietary education, walkers, a training staircase, bathtub, and exercise equipment.

Other PSWs are upgrading their skills with the Dementiability Method: The Montessori Way.

Similar to the educational program, the method works by engaging and stimulating a person with dementia through familiar activities (and developing a philosophy of care where there’s a prepared environment).

Developed at McMaster University by gerontologist and dementia specialist Gail Elliott, who refers to her practice as Dementiability, Elliott believes her program is essential for PSWs who may take over unnecessary tasks because they care for their charge.

“We create a disability in dementia that doesn’t have to be there. Don’t brush their teeth if they can do it themselves [even if it might be in a different way].”

Elliott says the key is in understanding the person through participation and observation and then helping them to maintain a level of independence through focused activities, text or visual cues.

I call it CSI dementia,” says Elliott, who started developing the program seven years ago and recently left McMaster to teach the Dementiability Method (which she independently funds) full-time.

For example, if a person with dementia needs to use the toilet but is asked if they need to go to the bathroom, they may well reply “no” because they think they have been asked to bathe. But if that same person is presented with a picture of a toilet the connection is more easily processed.

Understanding what draws a person to PSW dementia-focused training is tricky — common denominators are few: Mostly women, many from West Africa, South East Asia, and the Caribbean. But the common thread seems to be a familial experience with chronic illness. The experience of caring for ailing parents or siblings brings values of empathy, respect, and attention to detail.

“My mother and father-in-law both had dementia,” says Robin Hurst, an advanced practice consultant in mental health, seniors and personal care, who develops accessible education for PSWs, at Saint Elizabeth Health Care.

Saint Elizabeth, a national non-profit charitable home health care leader, established in 1908 with a staff of four community visiting nurses, has grown to include 6,500 health-care professionals. The educational and clinical experts deliver a range of courses from self-directed, self-paced e-learning courses to comprehensive on-site, hands on, clinical training. Some of the programs include palliative care, seniors care, bowel and bladder management.

Back at the PSW and Dementia class, Atemo is wrapping up the session when a student, who is currently a PSW within a long-term care facility, says she is sometimes afraid to speak her mind at work, for fear of losing her job or being scrutinized.

A PSW will often spend more time with a charge then any other caregiver and may be the first to notice subtle behavioral changes in appetite, demeanor, or mood, which may be a sign or symptom of a separate health issue. But a PSW must also balance the sensitivities of their families, with employer and workplace expectations – the possibility of conflict or communication breakdown is high. The family often doesn’t want to hear about any new problems or declining health.

Atemo tells the class that at some long-term care facilities a PSW may have as many as 15 people to care for on a daily basis, people who most often cannot speak for themselves, and the health and safety of every charge is top priority.

She closes the class on an impassioned and empowering note, “We are the advocates. Possibly the only advocate a client will have. In Canada, a PSW can stand up and be a real advocate.”

ALERT: Alzheimer’s Society of Toronto has just developed a Personal Support Worker “corner” on its website to help PSWs with resources, questions, links and education. To view it, click here


Rachel Harry is a media/arts consultant, producer, and writer, based in Toronto, Canada.


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