Families overwhelmed caring for a loved one with dementia can get online support

Confusion, stress and feelings of isolation are common among those dealing with dementia, but they can also plague the people trying to provide them with care.

Navigating the difficult landscape of shifting relationships with loved ones who have dementia and the complex emotions that come with it doesn't leave them with much time to gain understanding or look after their own needs — even if resources are out there.

"The fact is, many people just don't have the time," explained the Dr. Anthony Levinson during an interview with Ontario Today's Rita Celli. "They're on overwhelm as caregivers and it's impossible for them to imagine going out for a weekly, nightly education session about the illness."

The neuropsychiatrist at McMaster University and his colleague Dr. Sztramko, a geriatrician, both found short meetings with family members or other loved ones of people with dementia simply didn't allow enough time to deliver all of the information those people would need. 

So they set out to create a free, online program to provide caregivers with education about dementia at their own pace in the convenience of their own home.

• The many forms of dementia

Dubbed iGericare, the online tool includes interactive lessons that take anywhere from 10 to 40 minutes to complete.

They touch on topics ranging from basic questions — What is dementia? — to understanding the importance of caregiver wellness.

"People's lack of understanding about the illness may lead them to get frustrated or angry," said Levinson. "We hope some of the education helps the light bulb to go off or for other strategies to emerge that might take some of the pressure off."

Levinson says one key to managing a healthy relationship with a loved who had dementia is learning what might trigger combative or even aggressive behaviours.

Understanding what makes someone act out or become agitated, whether it's a crowded cafeteria or a certain medication, can make a big difference.

During Levinson's almost hour-long interview with Celli, callers shared their personal stories with dementia and suggested everything from supporting a loved one's blossoming relationship while in care to using black tape and arrow signs at ankle-level to guide someone to and from the bathroom.

Listen to Levinson's full conversation with Ontario Today host Rita Celli:

The doctor compared finding a place to care for a loved one to dropping a child off at school for the first time — they might be screaming and say they hate it, but family members can work with staff to make their surroundings more consistent and comfortable.

"You need an approach, you need to steady yourself emotionally, you need to be consistent, you need to be in the moment and do as many things as you can … to make the new place familiar," said Levinson.

Stealing moments from dementia

He added medicines may help a little bit in some cases, but for the most part non-medication treatments and interactions with people are going to be the "mainstays" of a challenging journey with dementia.

• How to reach the person inside the dementia

That makes the "glimmers of hope" and moments stolen from the disease all the more important.

"If people with dementia can find companionship, friendship, the relationships ... even if it's compromised by the dementia, that is really important."