04/21/2015 06:13 EDT | Updated 06/21/2015 05:59 EDT

Advice for Dementia and Alzheimer's Care

Andrew Burton via Getty Images
SAN LUIS OBISPO, CA - DECEMBER 19: (Editorial Use Only) Anthony Alvarez (L), age 82, talks to Phillip Burdick, a fellow prisoner and member of the Gold Coats program at California Men's Colony prison on December 19, 2013 in San Luis Obispo, California. The Gold Coats program is a volunteer care program where healthy prisoners volunteer to take care of elderly prisoners who either need general assistance with mobility and every day life or who also struggle with Alzheimer's and dementia. The program, the first of it's kind in the country, has existed for approximately 25 years. According to Alvarez, he has been incarcerated for 42 years due to a series of burglaries, possession of illegal firearms and escapes from county jail. Eventually these convictions led to him getting a life sentence due to three-strike laws. 'I never shot anyone,' Alvarez said, 'I had the chance but I could never shoot anyone.' Today is Alvarez's first day being assisted by the Gold Coats; he largely needs help with mobility. Alvarez tries to work out for a few minutes every other day. He says he would like to apply for compassionate release, a program where prisoners are released from prison after being found no longer a threat to society, or if a doctor deems that they are within the last six months of their life. Phillip Burdick, age 62, has been volunteering with the Gold Coats for over 18 years - he is the longest serving member of the Gold Coats. Burdick, who says he became a Christian in prison over 30 years ago, has served 37 years on a 7-years-to-life sentence for first degree murder. 'Being a Christian man, I know God has a plan for everything,' Burdick says. When asked why he joined the Gold Coats he responds, 'I was attracted to helping other less fortunate than myself - I can't imagine doing anything better in prison.' He hopes to work in a similar line of work if he is released. (Photo by Andrew Burton/Getty Images)

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 behaviour this way, and to create strategies to make them more comfortable and relaxed, and to reduce their fear, which will in turn reduce the behaviour," she says.

People living with Alzheimer's and dementia can exhibit a broad range of responsive behaviours, such as wandering, verbal repetition, sexual behavior or angry outbursts.

For caregivers, dealing with responsive behaviours 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 behaviours 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 behaviours are not simply random or meaningless acts of aggression or agitation. They are known as "responsive" behaviours 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 behaviours.

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 behaviours.

For example, exploring the difficult topic of sexual responsive behaviours, 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 behaviour has meaning behind it," explains Hickman.

"If someone can't communicate verbally what their needs are, they tend to express their needs through their behaviour, whether that is pacing or repetitive behaviour, or wandering. If we understand behaviour 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.

"They are trained to provide the same sort of education and consultation to a caregiver as a staff person might receive."

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 behaviours 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 behaviour, creating difficulties beyond the scope of the care team.

In response to this problem, the BSO has developed the "behavioural 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 behaviour 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.



Shifting Focus Guide to Dementia Behaviour

Shifting Focus video series

This story was originally published on, a website for caregivers of people with Alzheimer's and dementia. For more tips, answer and support, visit the site here.


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