People often don’t recognize Alzheimer signs

Hoping a cup of coffee might lighten their sombre moods, Nan MacKenzie, her mother Henrietta and sister sat down in a café.

Henrietta was showing signs of Alzheimer’s and had just been to a specialist who explained that her future years would mirror those of her sister Isabel, whose mind, Nan and her sister had slowly seen, was taken over by the disease. It was a serious and sad day.

At the table they sat at in the café, there was a mirror on the wall, which Henrietta carefully studied as they sipped at their drinks, clearly perplexed. Turning to her daughter she asked as she pointed to Nan’s reflection, “Is he with us?”

Nan and her sister burst out laughing then and still chuckle today when they think of that moment.

Alzheimer’s is a disease that kills people, and Nan’s mother would be one of its victims. But during the years she watched her mother live with the disease Nan came to realize a diagnosis doesn’t mean an instant death sentence or that laughter instantly leaves the lips.

As someone who watched her aunt and mother live for years with the disease and who heads the Pictou County Support Group for Alzheimer’s and Dementia, Nan knows well the frustrations that accompany dementia – the days of confusion and repetition – but she also knows that there is still joy and special moments to share with a loved one who has the disease.

“You must have room to laugh at some things,” she says.

The key is to remember that as much as a loved one may be affected by the Alzheimer’s, inside they still exist.

“They’re all wonderful people. It’s just that they say and do things in a different way,” she said.

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There was little known about Alzheimer’s when Nan’s aunt Isabel first started showing signs of the disease. She was living in California at the time and Nan and some other relatives went down to visit her.

“We were asked to fly down and see what’s going on.”

None of the hospitals wanted anything to do with her because of the stigma that people with Alzheimer’s were dangerous, which Nan is quick to debunk as “a lot of rubbish.”

“The person who has Alzheimer’s isn’t going to suddenly jump out and murder you,” she says.

There was little understanding in those days and even many professionals were perplexed about how to deal with it. Finally they did find her proper care though and returned home.

Later Nan’s sister called her from Montreal to say that their mother had been acting strangely.

“Is Alzheimer’s contagious?” she asked, explaining that the behaviours she was showing were similar to those of their aunt.

Soon, she too was diagnosed.

It’s that time that is most disconcerting for the person who is getting dementia.

“The person who’s diagnosed isn’t exactly sure what’s going on with them,” says Nan. “Some days you’ll have as normal a day as you can ever imagine. At the click of the fingers it’s changed to something else.”

For her mother the classic sign of repetition was soon evident.

“When is the mail coming?” she would ask over and over again, forgetting she had already asked and had already been answered on the subject to the point that her daughters felt like throwing the letters at her.

But Nan learned to cope with the repetition.

“You know, mom, you and Aunt Isabel were wonderful writers and you loved it, didn’t you,” Nan said once while visiting carefully diverting the subject.

“Yes we did. We always liked it,” she said continuing the conversation on its new path.

All her life Nan had never heard a rude word come from her mother’s lips, but suddenly those saintly lips would start spouting profanity much to Nan’s sister’s dismay.

Understandably it can be upsetting and at times embarrassing to see such actions from a loved one, Nan says, but that’s where it’s important for family members to be understanding and explain to their guests why the person acts the way they do.

One of the most dangerous things that people who have Alzheimer’s and their caregivers can do is isolate themselves, she said, which is part of the reason she started up a support group which meets monthly at High Crest. It allows people to have interaction where they might not otherwise and for those who care for them to get the chance to talk and share their frustrations and humorous stories. While you never want to disrespect someone who has Alzheimer’s, Nan firmly believes in finding the humour and joy in all situations.

 * * *

Put wool and knitting needles in Nan’s mother’s hands and beautiful products were sure to follow. Even in her last years as she battled Alzheimer’s, she could still pick up needles and from memory a beautiful pattern would begin to form. But before she finished, dropped stitches and holes would find their way into the work.

For Nan it is a perfect example of the dementia. It shows that there are definitely areas where the person will struggle, but they still possess a talent and past that is rich and beautiful – it just gets the occasional missed stitch or hole.

She chooses to focus on the talent they still have.

“It’s amazing,” she says. “It really is.”

A dangerous dismissal

Canadians are still dismissing symptoms of dementia as “just old age” based on survey results released by the Alzheimer Society earlier this month.

Close to 50 per cent of Canadians lived a year more with their symptoms before seeing a family doctor. Of those, 16 per cent waited more than two years.

The online survey which was conducted by the Society in the fall of 2011, also revealed that the most common reason people delayed seeing their doctor (53 per cent) was the belief that the symptoms were part of old age and would eventually go away. Another 39 per cent said their symptoms were episodic or didn’t take them seriously enough. More than a quarter refused to see a doctor or saw no need to go unless symptoms grew worse.

“Symptoms of dementia are different from normal aging,” says Naguib Gouda, CEO of the Alzheimer Society. “We need to help Canadians recognize the symptoms for what they are: signs of a brain disorder that will affect 1.1 million Canadians in the next 25 years. While we don’t yet have a cure, we can offer treatment that may slow the progression of the disease, and a wealth of information to help people prepare for their future needs.”

Experts in the field warn that a delayed diagnosis can result in a huge treatment gap and prevents people from getting valuable information about medications, support and better disease management.

“Dementia is a complex disease but a diagnosis can be reassuring for both the person exhibiting symptoms and their family,” said Dr. Francine Lemire of the College of Family Physicians of Canada. “With early diagnosis, medications can help minimize symptoms and improve quality of life.”

What is Alzheimer’s?

Alzheimer’s disease is the leading form of dementia. It is a fatal progressive disease of the brain that robs memory and steals the ability to reason, communicate and perform daily tasks. Changes in the brain can begin to appear decades before diagnosis and progression can last between seven and 10 years. Eventually, the person affected will require 24-hour care and supervision. Age is the single biggest risk factor, but the disease can strike as early as 40.