KJIPUKTUK (Halifax) – We give up too quickly on the many people in the province’s long time care homes who have dementia, says Dr. Ellen Hickey, a speech language pathologist who teaches at Dalhousie’s School of Human Communication Sciences and Disorders.
There are many things we can do to help them communicate, and to make them feel calmer and more engaged in activities. But this is an area of expertise that is mostly overlooked in Nova Scotia, according to Hickey.
When people with dementia have difficulty communicating their needs and wishes with staff, they may display responsive behaviours that are aggressive. Not being included in decision-making because of the assumption that they cannot express their wishes may lead to a poorer quality of life than what is possible.
Most people don’t know that there is anything you can do
“Most people don’t know that there is anything you can do,” says Hickey. “There are a lot of areas where we don’t give people with dementia choices because we assume they can’t be part of the decision making process, and that is just not true.”
There are proven strategies, from working one on one to modifying the environment of a facility, that allow staff, family and people with dementia to all get their messages across, even complex and deeply personal decisions about end-of-life care ahead of time. Hickey mentions a study in Florida of people with dementia who without supports were unable to stay on topic, but who, when pictures and written words were used as an aid, were able to consistently indicate their preferences about resuscitation, cremation or burial, and so on.
Other techniques leverage motor activities to stimulate memory.
“My students were working with a woman who would just repeat the same four statements, over and over. Then they showed her this skein of yarn, and asked her how to turn it into a ball,” Hickey says. “She declined, so the student started doing it, but not very well, and the woman said, let me show you how to do it! And as she was doing that all of a sudden she was saying all kinds of things nobody had ever heard her talking about.”
Similarly, life story books, highly personalized books with photos and specific personal information about an individual’s past life events, can be surprisingly efficient conversation starters.
Hickey mentions one particular woman, who was often agitated, who benefited from this approach.
“She always sat in the hallway of her long term care home, and she would spit at people and try to kick them. People would make a wide berth around her,” Hickey says. I’d look at her and I realized that lady is trying to communicate, and she doesn’t know any other way to do it.”
“With her family we made a conversation book about her life and her interests, and did it ever trigger her memories… All spitting and kicking behaviours disappeared. She would even look at her conversation books by herself. It turned out that her life was so interesting that staff would sit down with her when they had a bit of free time, and ask her questions.”
It’s not a luxury
Not every case is that successful, but it does illustrate how important the ability to communicate is in the long term care context, Hickey says. To be able to be understood matters, not just because it makes operations at a long term care home more efficient while reducing medications, but because it is a fundamental human right. She points to the International Communication Project as an initiative that emphasizes those aspects.
When people have difficulties with their speech and language, we make all kinds of assumptions about their competence, just like we used to make assumptions about people with physical challenges, says Hickey.
We’re dealing with a lot of people. There are older studies that show that 80% of people in long term care have some sort of communications challenge.
We build physical ramps, but we don’t build communication ramps
Yet in Nova Scotia not enough effort is made to leverage the expertise of speech language pathologists in long term care, Hickey believes.
“Just to have say six speech language pathologists in the province to work with families, staff and volunteers would be beneficial,” says Hickey.
“There is already lots of expertise in the facilities, I am not criticizing the amazing staff, they work so hard and they already know a lot, but what is lacking is the communication training, they’re not aware of all these communication strategies that have been shown to work. We build physical ramps, but we don’t build communication ramps.”
We asked the department of Health and Wellness whether it had thought about Dr. Hickey’s suggestions. Its response is open-ended at best.
“(G)overnment has brought together a group of experts to look at some of the most pressing issues related to quality of care in long-term care, so they can recommend solutions,” writes departmental spokesperson Tracy Barron.
“The department believes the advisory panel can help us improve the system. We expect to hear back from the panel by the end of November, and we look forward to receiving their evidence-based solutions for improving the quality of care in our facilities,” Barron writes.
We hear a lot about the state of long term care in Nova Scotia. the cut backs in staff and funding, the lack of beds, and so on, yet here is an issue that could be addressed relatively cheaply and with huge pay-offs, Hickey believes.
“When it comes to long term care, all you hear is doctors, drugs, nurses. What about the rest of the team? There is all kinds of know-how that will help keep people off these drugs, that will keep them out of the doctor’s office. Isn’t that what it is all about?”
See also: Op-ed: Nova Scotia needs to fund more dementia training in long term care facilities
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