Alzheimer’s is called the ‘family disease.’ How to address the issues in your personal Alzheimer’s circle.

Lost in thought: The caregiver’s burden

Lost in thought: The caregiver’s burden


What lifts Erna Boehling from despair over her husband’s long descent into dementia is that he’s at home with her, he’s mobile, he’s continent, he’s not violent and every once in a while, he recognizes his wife of 62 years and says, “I love you.”

These are the things that make Erna thankful.

Mostly, her once-vigorous husband, Willi, is lost inside his silent shell, says 85-year-old Erna.

Sometimes, though, he will come back to himself for a moment and say something sweet. Once it was, “Oh, you are the best one I could ever have.”

“That is so beautiful,” Erna says. “That is how I cope.”

Overburdened but determined to care for her husband properly, Erna is one of more than 750,000 Canadians who look after someone with dementia, the progressive brain deterioration that is on a rampage among the baby-boomer generation.

Everybody – regardless of dementia or not – needs a reason to get out of bed in the morning, something to look forward to and someone to love.

As the baby-boomers age — and begin to be diagnosed with dementia — their experience will not be dramatically different from those afflicted in Erna and Willi’s generation.

There is still no cure for dementia and treatment is limited despite decades of scientific research. That’s why the focus has turned as well to finding new ways of caring for and managing people with dementia – a group of diseases and disorders that gradually shut down the cognitive functions of the brain.

People with dementia lose their connection to reality, disappear into themselves, develop problems thinking and interacting with others, and cannot carry out the simple acts of daily living — dressing, toileting, eating or responding to questions or simple instructions.

Short-term memory virtually disappears and movement is often limited, because in some cases, the brain is no longer sending the correct signals to other parts of the body.

Caring for a loved one is backbreaking, upsetting, frustrating, sometimes hopeless, work.

Willi has been declining since he turned 80 — the age at which the risk for dementia is at its all-time high. He is 87 now.

“None of it is his fault, he’s a sick man,” Erna says in an interview in her spotless home.

Even with the disruption of the couple’s lives, and the anxiety she feels, Erna believes she is blessed. She loves Willi and feels that being there for him is a gift.

She knows him well, inside and out, and is intimately familiar with what makes him tick.

Erna tries hard to connect with the man she knows is still inside that silent shell.

That’s exactly what the approach to care for someone with dementia should be, says Gail Elliot, former assistant director at McMaster University’s Gilbrea Centre for Studies in Aging.

“You have to find the person, their story, their humanity,” says Elliot, founder and CEO of DementiAbility Enterprises Inc., which certifies caregivers in the use of Montessori principles to help dementia patients.

Erna/WillieElliot teaches that encouraging people with dementia to focus on meaning and purpose — instead of warehousing them or simply going through the motions of care — can actually open up new pathways in the brain that motivate and stimulate patients, especially in long-term care settings.

“You don’t want to just put them in there and say now they’re looked after, it’s all good, it’s all fine and nobody pays attention to their needs.”

Instead, you help people with dementia to re-engage in life, no matter where they’re placed, she told a recent Montessori workshop for professional caregivers.

And doing things repetitively – a Montessori method used to stimulate learning – might actually cause the brain’s dendrite tentacles to grow and become bigger “because you’re giving the brain opportunities to work.” She calls these “brain cascades.”

The kind of brain renewal that Elliot believes can happen is called neuroplasticity, the ability of the brain to restore itself even after trauma, or a decline into dementia. The theory is that the brain is elastic, and that mental exercise can stretch and strengthen neural pathways.

Elliot’s treatment approach — increasingly used in long-term care homes across Canada and the U.S. — is based on American psychologist Cameron Camp’s work with Montessori methods to help dementia patients retain dignity and remain active. Elliot believes the Montessori principles of encouraging independence in a stimulating environment are clearly transferable to those with dementia.

At the workshop, caregivers from a dozen Ontario long-term care homes demonstrated the Montessori-style materials they’ve developed under Elliot’s tutoring.

Their offerings — bins and boxes full of colorful objects, baking exercises, art supplies — are designed to encourage patients with dementia to dive into familiar tasks, stimulating their physical and mental activity. Smell, touch, hearing and eyesight all get workouts.

A small bin filled with doll clothes dumped onto a table provides the tool for laundry folding, a familiar activity for women, and sometimes men as well. Sorting nails and screws into a fishing-tackle box promotes a man’s engagement, stimulating the feeling of doing something of value.

Even setting a table in a nursing home, or scraping plates, involves a dementia sufferer in their own community.

“This enables people to be more independent and stimulates cognitive, social and sensory activity,” Elliot says.

“Everybody – regardless of dementia or not – needs a reason to get out of bed in the morning, something to look forward to and someone to love.”

At the Boehling home, there’s a lot of love, and what Gail Elliot describes as the right kind of breakthroughs to the person Willi used to be.

But there’s also enormous pressure — typical of the burden most family caregivers face.

Even with Willi’s dementia and her own heart-related health problems, the couple until recently received only nine hours of government-paid assistance each week — despite the Ontario Liberals’ promises to increase home care support.

That nine hours — including a once-a-week shower for Willi and help with Erna’s household chores — was the maximum assistance the couple was allowed through the Community Care Access Centre (CCAC), the agency that approves and organizes all publicly funded in-home care.

This summer, the CCAC boosted the Boehlings to 22.5 hours a week when Erna could no longer function with such little sleep or cope with the rising demands of Willi’s care.

“He has been pretty good,” Erna says. “But after 1 a.m. every night, I am up every hour.”

A restless Willi spends most of each night getting up and being put back to bed, possibly triggered by sundowning. A common consequence of dementia, sundowning is the result of damage to the normal body clock that controls sleep patterns.

Normal brains sense day and night, telling us when to be active. In dementia, there is often disorientation and agitation at sunset and into evening, causing bedtime confusion and resistance to sleep

Now, a care assistant will be on duty overnight twice a week, freeing Erna from Willi’s up-and-down. Three hours a week, during the day, Erna will get publicly paid “caregiver relief,” enabling her to work around the house while someone supervises Willi.

“He can’t be left alone,” she says. “And he’s completely out of it.”

And as part of the 22.5 hours, someone will still come once a week, to give Willi a shower and help with his personal grooming.

One night, he got up and covered the whole floor in water. He was bored, maybe and probably took the drinking cup and poured and poured.

In a schedule typical for those with dementia who are mobile, Erna also takes Willi to a day program at St. Joseph’s Villa on Mondays and Thursdays. He’s gone from 9:30 to 3:00. The program is helpful — for one thing, on those days, she doesn’t have to cook because a full-course meal is provided at St. Joe’s.

But when Willi is home, his disorientation and his aimless wandering — a characteristic of dementia — produces major difficulties.

“One night, he got up and covered the whole floor in water. He was bored, maybe and probably took the drinking cup and poured and poured. He goes in the living room and rearranges it. He doesn’t understand instructions. The best thing he likes is to sit at the window and watch what’s happening on the street.”

Erna despairs of the time — which is coming — when Willi will need to go into long-term care. He is on a waiting list now for a bed, but wait times in this region can be years.

In the Hamilton region, even if a family is willing to forgo their top choices for a long- term care bed, the overall wait time is 178 days, the third-longest in Ontario.

Even when a space becomes available, a dementia patient cannot be assured of the right kind of care.

Loneliness and boredom are the scourge of dementia, experts say.

And as hundreds of thousands of boomers are swept into dementia in the coming decades, it is more important than ever to consider new ways of supporting their needs.

Successful as Gail Elliot’s use of Montessori may be, such new techniques for dealing with the heartbreaking personal deterioration of dementia are in their infancy.

That leaves few readily accessible alternatives to traditional care for the age group soon to be prime candidates — the baby-boomers, as they pass into their 60s and beyond.

A 2012 study by the Alzheimer Society of Ontario reported that high-needs seniors with dementia living at home receive, at most, a few more hours of home care per week than those with moderate needs — eroding the opportunity for time-stressed visiting health workers to try new, stimulating techniques.

In Ontario long-term care homes, the scarcity of special units makes it less likely as well that dementia patients will be beneficiaries of effective, emerging techniques, although this is changing slowly.

Gale Carey, CEO of the Alzheimer Society of Ontario, says people with dementia need timely access to long-term care.

“Once placed, however, there is no guarantee they will receive care from staff who are trained and have the skills to respond to the needs of residents with dementia or cognitive impairment,” Carey says.

“Not only do we need to reduce wait times, but we also need to make sure there is consistency in the quality and delivery of care across residential settings.”

In Gail Elliot’s words: “You can’t just park them in long-term care.”

Elliot, the Montessori expert, said that no matter where the person with dementia is based, the focus of care should always be finding that person’s level of ability and stimulating it — both to encourage brain activity and to add meaning and purpose.

For a spouse or family member, managing at home can be an exceptionally difficult task, never mind trying to find the person now disappeared behind their dementia shell. Supports for caregivers do exist, especially through Alzheimer Society websites and seminars. And new resources are constantly arriving.

McMaster University and University of Waterloo researchers have recently designed a new Living with Dementia website to help people just beginning the journey. Carrie McAiney, an assistant professor of psychiatry and behavioural neurosciences at McMaster said the resource will be especially valuable for professional health care providers and community organizations supporting those whose lives are touched by dementia.

Mary Burnett, CEO of the Alzheimer societies that serve Hamilton, Halton, Brant and Haldimand Norfolk, stresses that “we need to get over our fear of dementia, which only adds to its stigma.”

“There is a person behind the disease, who needs the right care and support.”

One new Ontario government program has raised hope.

The Behavioural Supports Ontario project has provided $55 million in provincial funding over the last two fiscal years, including $4 million a year to the Hamilton area LHIN.

The money allows health service providers to hire new staff — nurses, personal support workers and others — and help them gain specialized skills to provide care for these patients with dignity.

“The BSO funding has been an incredible opportunity to help educate front-line health-care workers about finding the person behind the dementia,” says Donna Cripps, CEO of the Hamilton area LHIN.

“It’s about discovering the needs of the person and providing them the care they deserve as a person.”

But no resource can eliminate the painful reality of changes that occur in the behaviour of loved ones as dementia progresses.

Most people with dementia experience irritability, restlessness and, sometimes, explosive behaviour — usually the result of an environment that is confusing or uncomfortable to them because of changes in perception caused by deterioration of the brain.

Experts say the ideal environment for a person with dementia is one that provides clear, calm and comforting structure, with an even temperature, adequate lighting and without too much over-stimulating noise.

Alzheimer Societies, the CCAC and other groups run programs to help spouses and family caregivers understand how to manage some of the difficult problems that arise.

Elliot stresses to her caregivers in training that one of the most helpful techniques is known as Gentle Persuasion — a technique many parents might recognize as an alternative to head-to-head resistance.

Elliot uses the example of a person with significant cognitive decline who resists getting on the DARTS van that has just arrived to take the patient to a day program.

Think first about the cause of the resistance, she advises. Recent memory declines in dementia, leaving many people connected most firmly to memories from early life.

“What were you taught as a child? Don’t go with strangers,” she reminds caregivers at her seminar, explaining how important it is to find the reason for conflicts.

A gently persuasive solution would be to explain to the patient that it’s OK to go with this driver, because you will be fine, instead of just an order to get on the van. The principle can be applied to just about any other situation where a person with dementia balks at something for no apparent reason.

Additional information for caregivers is available through the Alzheimer Society for Hamilton and Halton or 905-529-7030 or 1-888-343-1017.

More from this series:

Lost in thought: The long goodbye

Joan Walters is a National Newspaper Award winner.

You might also enjoy:

Torn between mom with Alzheimer’s and challenging foster child

How do we do what’s right for each of them? Dementia Alliance’s Dana Vladescu teases out the puzzle.…

How real conversations lead to real relationships

Why is it that with some people, I can have these meaningful conversations in which I feel like a good…

Put The Family Into Training

When John Hobday’s mother gave birth to four children over four years, his grandmother Therese jumped…

Mara Botonis: the making of an advocate

“It’s an honor and a privilege.” Those are the words I shared with my mother during a phone call…

comments powered by Disqus