By: Richie Assaly
"An individual might not be acting out aggressively or violently, but acting from a place of fear or confusion."
This is Kathy Hickman talking. She's the Knowledge Mobilization Lead with brainXchange, and the Education Manager for the Alzheimer Society of Ontario. To her, understanding and exploring this distinction between aggression and fear is essential.
"It's important to reframe the behavior this way, and to create strategies to make them more comfortable and relaxed, and to reduce their fear, which will in turn reduce the behavior," she says.
People living with Alzheimer's and dementia can exhibit a broad range of responsive behaviors, such as wandering, verbal repetition, sexual behavior or angry outbursts.
For caregivers, dealing with responsive behaviors can be a frustrating and exhausting task. But there are answers.
A provincially funded project in partnership with the Ontario BrainXchange, a project called Behavioural Supports Ontario (BSO), is dedicated to enhancing the quality of care and support for those exhibiting responsive behaviors associated with dementia and other neurological conditions.
To date, more than 475 new front-line staff have been hired across Ontario. Follow on Twitter @brain_Xchange
Responsive behaviors are not simply random or meaningless acts of aggression or agitation. They are known as "responsive" behaviors because they caused by circumstances related to a person's condition or a situation within his or her environment.
Drawing from formal research, practice-based field knowledge, and information provided by other care partners, the BSO network focuses on knowledge sharing, relationship building, and providing caregivers and support workers with the right strategies for addressing responsive behaviors.
Helping Caregivers
The BSO has produced a number of free resources for caregivers that provide concrete strategies for understanding and dealing with dementia behaviour.
Shifting Focus is an accessible and comprehensive guide for caregivers, offering practical solutions and handy tips for dealing with common responsive behaviors.
For example, exploring the difficult topic of sexual responsive behaviors, such as masturbation, the guide reminds caregivers to restrain from admonishing or restraining their loved one, suggesting instead that they provide the individual with privacy, or facilitate an alternative activity to occupy the individual's attention.
"All behavior has meaning behind it," explains Hickman.
"If someone can't communicate verbally what their needs are, they tend to express their needs through their behavior, whether that is pacing or repetitive behavior, or wandering. If we understand behavior as them trying to communicate something to us then we can step back and say what does this mean? What is the bigger picture?"
The guide, which was created in partnership with informal caregivers, is available online, in print, and as a video series. Other resources are available on the BSO website.
Improving Care
According to the BSO, the levels of supports for Canadians with cognitive impairments -- a population that is steadily increasing -- are often inadequate, or nonexistent. Working closely with a number of Local Integration Health Networks (LHINs) across Ontario, the BSO provides a number of services that offer hands-on training and education to support staff and care partners.
"A lot of the work in each LHIN has focused on things like building relationships, learning strategies, shifting the focus to the person-centered approaches, using continuous quality improvement strategies and creating central service access points, as just a few examples," explains Hicks.
One core service involves "mobile teams" -- a group of specially trained support workers that travel to long-term care facilities and community agencies within their LHIN, providing assistance in dealing with individuals exhibiting responsive behaviors beyond the capacity of the local staff. Other BSO support workers are embedded within long-term care facilities, offering capacity building to staff and providing additional support.
Hickman points out that the BSO experts can be called to assist caregivers directly. "They are trained to provide the same sort of education and consultation to a caregiver as a staff person might receive," she explains.
Occasionally, an individual with dementia will experience an escalation in responsive behavior, creating difficulties beyond the scope of the care team.
In response to this problem, the BSO has developed the "behavioral support transition unit" -- a distinct unit that offers specialized support to clients for a brief, or even extended period of time. Once the client's behavior has stabilized, the unit facilitates the individual's transition back to their previous place of residence. (To find a unit in your region of Ontario, type Behavioural Supports Ontario into Google, or call your local LHIN.)
As the BSO project expands throughout Ontario, it remains committed to a flexible and versatile strategy that responds to and integrates knowledge from every level of care.
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This story was originally published on Alzlive.com, a website for caregivers of people with Alzheimer's and dementia. For more tips, answer and support, visit the site here.