A Helping Hand

Stephen Lang’s whole life was turned upside down the day he learned that Amelia, his beloved wife of 35 years, had Alzheimer Disease. “She’d been showing signs of forgetfulness for awhile, but I assumed it would pass,” recalls the 69-year-old Toronto native. “Soon she couldn’t perform routine tasks like cooking, washing — even reading.

Worried at these developments, Stephen took Amelia to the family doctor. After a medical exam, the doctor booked another appointment where Amelia had to undergo several cognitive tests. When she scored poorly on these (she couldn’t remember her children’s names), the doctor asked Stephen to describe all the symptoms. Then he made his diagnosis – Alzheimer Disease.

What is Alzheimer Disease?
The most common form of dementia in Canada, Alzheimer Disease (AD) is a degenerative disorder that destroys vital brain cells and greatly reduces the patient’s ability to function in life.

Usually described in three stages — mild, moderate and severe — AD patients gradually become more disoriented, confused and irrational as the disease runs its course. In the early stages, they may experience a declininability to remember things such as names or birthdays. As the disease progresses, they may become increasingly confused, lose track of recent events in their lives and become unable to perform simple tasks. In the later stages, patients may become irrational, experience personality changes and display agitated and aggressive behaviour.

The cause of Alzheimer Disease remains unknown, though age and family history play a role. We do know, however, that it’s becoming more common. Experts estimate that 360,000 Canadians have Alzheimer Disease or related dementia. And, as it generally strikes people over the age of 65, this number will skyrocket as our population ages, reaching as many as 750,000 by 2031.

The disease can run its course quickly or take a long time — up to 20 years. The average, however, is nine years, and that’s a crucial length of time for caregivers, many of them family members or friends, who are charged with the task of looking after the patient at home. For many of these years, they’ll be acting as nurse, cook, cleaner and constant companion.

Next page:  Caring for a Patient with AD

Caring for a Patient with AD
When Amelia was diagnosed, Stephen accepted the highly challenging and stressful role of looking after her at home, becoming what’s known as an informal caregiver. “The most difficult part was not knowing exactly what caregiving involved,” says Stephen. “When Amelia was diagnosed, I was suddenly faced with the major challenge of how I was going to look after her.”

As Amelia’s ability to care for herself continued to slip, Stephen would assume more responsibilities. He helped her get dressed in the morning, prepared and fed her meals, took her for walks, read to her, drove her to appointments, organized nursing care and kept track of medical records.

It was all new territory to Stephen. Beyond changing diapers, he’d had very little caregiving experience. In fact, Stephen was in the minority among caregivers in Canada — up to 70 per cent are women.

Like many caregivers, on top of looking after his patient, Stephen was also trying to hold down a regular job. In the morning, he’d get Amelia dressed and fed, wait until the visiting nurse showed up, dash off to school, teach his courses, rush home and resume caregiving.
Little wonder his job performance suffered. In fact, a recent U.S. study shows that half of informal caregivers say their employment is negatively affected during the time they cared for a loved one. Up to 40 per cent said caregiving duties caused them to miss three or more days of work every six months, and 16 per cent said it forced them to be away 10 or more days in the same period of time. Some even reported they had to quit their jobs in order to look after their patient.

Reducing the Burden
It soon became apparent that Stephen could not handle the frantic pace, especially as Amelia’s health deteriorated. Something had to snap, and finally Stephen’s health began to suffer. “I was constantly tired and began experiencing chest pains,” he recalls. His doctor ordered him to slow down, reduce the stress. Plus, he advised him to relinquish caregiving duties. Busy looking after Amelia, Stephen had compromised his own health.  On average, caregivers of patients with mild to moderate Alzheimer Disease spend up to 3.2 hours each day looking after their loved one. This huge workload means caregivers often experience burn-out and overstress, creating health issues of their own.

It’s therefore vital that we lessen the burden on the caregiver. Family and community organizations play a huge role here, not only providing emotional and practical support for the caregivers, but perhaps more important, giving them a break and allowing them to recharge their batteries.

Science is also providing ways to lessen the caregiving load. A new class of medication called cholinesterase inhibitors has shown great promise in treating the symptoms of patients with mild to moderate Alzheimer Disease.

There are now three cholinesterase inhibitors available to Canadians, the latest being Reminyl. Though not a cure, these drugs work by slowing the progression of symptoms and allow patients to maintain a higher level of function for a longer period.

“We know that one of the key issues in managing dementia, such as AD, is caregiver burden,” says Dr. Sharon Cohen, a behavioural neurologist at the University of Toronto and North York General Hospital. “Effective treatment for dementia along with access to specific dementia-related support groups goes a long way in reducing the stress experienced by caregivers.”

Next page: Early Diagnosis

Early Diagnosis
That’s why early diagnosis is so important (see “AD: Signs and Symptoms” below). Because these medications are prescribed for mild to moderate cases, the earlier a patient is diagnosed, the earlier he or she can be treated. Timely and effective drug therapy can play a dual role: it improves the patient’s quality of life, plus it reduces the number of hours the caregiver must spend assisting the patient with time consuming activities, such as washing and feeding.

Lessening the burden of care is one of the major goals of AD treatment and recent studies show that new medications can reduce the caregiver’s duties by up to an hour   each day — providing a much-needed break.

Besides accessing effective treatment, both the patient and the caregiver need strong support from doctors and nurses, community organizations and, most important, the family.  When all these groups are working in unison, they create a system that offers medical support for the patient and emotional and practical support to lighten the caregiver’s burden. By making their job easier, they can  provide a better quality care for their patients. It’s a support system that benefits everyone.

On average, caregivers of patients with mild to moderate Alzheimer Disease spend up to 3.2 hours each day looking after their loved one.

AD: Signs and Symptoms

  • Recent memory loss
  • Physical agitation
  • Difficulty performing everyday tasks
  • Language problems
  • Verbal outbursts
  • Disorientation of time and place
  • Poor or decreased judgment
  • Misplacing things
  • Changes in mood or behaviour
  • Changes in personality
  • Loss of initiative
  • Physical aggression

    Caregiver Support Team

  • Family and friends
  • Patient’s health care team
  • Alzheimer Society of Canada (www.alzheimer.ca)
  • Caregiver Network Inc. (www.caregiver.on.ca)

  • This Special Sponsored Feature was produced by the editors of CARPNews 50Plus through an educational grant from Janssen-Ortho Inc.