Learn how Elba Dzouza is coaching caregivers on how to support quality of life for people living with dementia so they can remain at home longer.
The health care system is changing. People want health care that is accessible, coordinated and understandable – no matter where or by whom they are cared for.
In our Transforming the Health Care System series, we share the stories of how we are changing the system and achieving positive outcomes for people and health care providers in our communities.
This week, we learn about how Elba Dsouza, in her unique role as community dementia clinician, is helping caregivers support quality of life for people living with dementia so they can remain at home longer.
At the age of 89, “more or less,” Gertrude Shuker is as proud, spry and determined as ever.
A former realtor with deep roots in the Abbotsford community, Gertrude has always gotten involved in whatever she was invited to, that is, if she wasn’t already the one doing the inviting.
When not running a successful business, Gertrude was running the Shuker family home and garden with her husband, Stuart, and raising their children, Julia and Jaymon. Life was vibrant and filled with great friends, neighbours and community connections.
Until one day it wasn’t.
After Gertrude’s husband passed away in December 2015, Julia moved into her childhood home to support her mother. Within a year of his passing, Julia noticed that her mom started to experience delusions. She struggled to remember simple things. She would become inexplicably angry. Her conversations would trail off and then stop completely.
At the same time, Julia was attending university. It became increasingly difficult for Julia to focus on her studies as she would worry about her mom the entire time she was at school.
Frightened by what was happening to her mom and feeling powerless, in May 2016, Julia met with the social worker who was assigned to her family after her dad passed. Services were offered through the Abbotsford and Mission Specialized Seniors Clinic, including the support of a Community Dementia Clinician.
A woman named Elba Dsouza had just started in this new, one-of-a-kind clinician role, and she came over to the house with a community care worker to visit Gertrude and Julia.
“My parents were always 110 per cent behind me,” says Julia. “It was my privilege to care for my mother, but I couldn’t manage studying, working and caring for my mom in the way that I was.”
Caregiving is no easy job, especially if the right supports are not in place. It can take a tremendous toll on the physical and emotional health of the caregiver, yet many often don't recognize the warning signs, or deny its effects on their personal health. At times caregivers are alone as they compensate for the losses in their loved ones – they are living, caring and managing lives for two people.
The role of the Community Dementia Clinician – a need expressed by the community -- has been quite powerful for families in Abbotsford. “Having a loved one with challenging behaviours that you’re trying to desperately care for and keep at home leads to caregiver burnout and earlier than desired placement in residential care,” reports Sarah Siebert, clinical nurse specialist, Abbotsford Mission Communities.
“Having someone like Elba who helps with strategies to support them as a caregiver rather than just expecting that they carry on with these challenging behaviours is powerful. Without that support, many of these people with dementia would be going into residential care earlier than necessary.”
Elba gets requests from home health and home support staff, family doctors, the Alzheimer’s Society and others when caregivers – family or formal -- report behaviours in the person that are difficult to manage. These behaviours may include refusing to let anyone come in and provide them with health or personal care; lashing out; mistaking others’ identities; pacing; and difficulty processing their environment.
“Time of day, certain words on TV, even water splashed on the face during a shower can trigger behaviour in a person,” says Elba. “When I bring this to caregivers’ attention that the person is trying to communicate but cognitively unable to, their reaction is often, ‘Oh! That’s why they’re doing that. Now that makes sense,’ rather than ‘Why don’t they just stop!’
Drawing on her years of experience working in residential care with a variety of professionals, Elba walks caregivers through the underlying reasons for their loved one’s or client’s behaviour and provides them with ways to approach the client that is based on their interests and abilities. This helps redirect and soothe the person, which eases their behaviour.
“I came from a work environment where every member of the team knew residents…knew what they liked and didn’t like, so when something came up, we problem-solved as a team,” says Elba. “Often someone would say, ‘I used this somewhere else and it worked; can we try this here?’”
Elba also involves caregivers and clients as part of the team that includes community workers, the seniors clinic and family doctors, and is as focused on caring for the caregiver as she is on the client.
“The first time we met with Elba, I was not doing well,” recalls Julia. “She asked me about my level of worry; ‘How are you doing on a scale from one to four?’ she asked, to which I replied, ‘Is there a five?’ We laughed and I knew then we would have a good working relationship.”
After meeting with Julia and Gertrude, Elba was able to provide Julia with some quick and simple strategies that could assist her in diverting her mom’s attention from what was agitating her to something that she enjoyed. She also facilitated respite care for when Julia was working, so Julia could focus on her job. With support, Julia was able to care for her mom at home for 28 months after her dad passed away. Julia was also able to complete her master’s degree with distinction, and then became a university professor.
“I needed to acknowledge that I couldn’t do it all, despite my trying to do so,” says Julia. “Elba would assure me that how I felt was totally normal, and was able to put things into perspective for me in a way that others in my life couldn’t. She also taught me that it’s a sign of strength to ask for help.”
Today, Gertrude is disappointed that it’s too cold out to be in her favourite place – in the sun, in the courtyard of the Menno Hospital. She moved in just a couple of months ago when her care needs progressed. Since moving in, she has been busy filling pots with geraniums, bacopa and big tomato plants, just like she did at home. Even if it doesn’t warm up later, she is still keen to get outside to tend to them. After all, she’s never been one to let anything get in her way.
Smiling, Julia leans over to her mom and says, “We’re superwomen, aren’t we mom? We just put our capes on and away we go.”
For more information about support for caregivers of people living with dementia, including coaching, group support, and peer volunteering, please visit fraserhealth.ca
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