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Laurie Scott stands at the portable keyboard in her living room, singing. Her support worker, Laurie McAndrew, is behind her, and stretches her arms around her to pick out a tune on the keys.

“You are my sunshine, my only sunshine,” the two sing, swaying together in an embrace.

This used to be Ms. Scott's favourite song, one she loved to belt out.

But she doesn't sing much any more, and even today, one of her good days, she can't summon many of the words. She warbles a few lines in a rough, weak voice, then wanders away.

Ms. Scott, 55, was born with Down syndrome but is slowly dying from Alzheimer's disease, a progressive, degenerative illness that is destroying her brain. The two conditions are tragically linked; most people with Down syndrome are afflicted with Alzheimer's in middle age, and their final years are marked by a profound intellectual, emotional and physical decline.

Ms. Scott used to love travelling, singing and all things Scottish, including the Highland fling. Now she hates leaving home and spends her days sleeping and wandering in circles.

The culprit appears to be chromosome 21. Most people with Down syndrome have an extra copy, and it carries the instructions for a protein believed to play an important role in Alzheimer's. That extra chromosome shaped their brains and their bodies in the womb, and now it is shaping their final years, robbing them of the skills they worked so hard to learn, along with their memories and their personalities.

“People with Down syndrome are living much longer than they ever used to, and one of the consequences as they get older is this very high risk of Alzheimer's disease. It is really very tragic,” says Nicole Schupf, a researcher at Columbia University in New York.

She is part of a team in the United States that studies dementia in people with Down syndrome. Their goal is to understand why some people get it so early, in their 40s, while others aren't afflicted until their 60s.

While their work is focused on a unique group, Dr. Schupf believes their findings may lead to a better understanding of the pathology of Alzheimer's and the complex interplay between the environment and genes that triggers the disease.

They hope, one day, to find a way to slow the onset.

A common disability

Down syndrome is a relatively common developmental disability that affects roughly one in 900 babies born in Canada, and Alzheimer's hits at a younger age and moves much faster in people who have it.

In 1920, a baby with Down syndrome was expected to live only nine years. Improved medical care – including cardiac surgery and better antibiotics – means individuals with the syndrome are living much longer, to 55 or more.

But studies show that by 40 their brains are becoming clogged by the plaques and tangles characteristic of Alzheimer's. By 65, three-quarters of them have dementia, Dr. Schupf says. That compares with roughly one in 10 people over 65 in the general population.

Living with someone descending into dementia can be both heartbreaking and backbreaking. In the case of people with Down syndrome, their parents are often elderly themselves, and find they can no longer look after adult children who now need help dressing, bathing and eating, and who sometimes no longer recognize them.

Group homes, where many people with Down syndrome live, are working to accommodate their changing needs.

Ms. Scott lives in a group home on Dissing Crescent in London, Ont., perhaps the first in the country built specifically for people with Down syndrome and dementia. She was one of the first to move in seven years ago, shortly after it opened.

Her generation is the first to have lived so long, but lost so much.

Once a private person who didn't like anyone to see her in her pyjamas, she can no longer dress or bathe herself or use the toilet. She rails against having her toenails cut.

Once a caring and sensitive friend, she doesn't recognize the people who love her and look after her, including friend Carol Wilkinson, who, since the death of Ms. Scott's mother 11 years ago, makes decisions about her medical care.

“It is not at all Laurie. The personality that was there has been taken away,” Ms. Wilkinson says.

Sometimes Ms. Scott swears or screams at the staff. The photos of her friends, family and her many trips have been taken off her bedroom wall because she had started throwing them around the room.

There is one photo of her on the wall in the hallway, snapped before dementia took hold. It is hard to believe it is the same woman.

In the photo, Ms. Scott looks strong and happy. Her skin is relatively smooth, her hair coiffed and coloured, her eyes sparkling. Today her skin is wrinkled and hangs loosely around her face. Her hair is grey and coarse and her eyes are dull, and at times don't seem to take in much of the world around her.

But on her rare good days, you get a glimpse of the woman she once was. She'll hear music she likes, such as songs by the Beach Boys, and wiggle her hips in a brief dance, or throw her hand in the air as if she's doing the Highland fling.

She'll give Ms. McAndrew or Cia Addy wet, rubbery kisses. They work for Community Living London and have looked after her since she moved to Dissing Crescent.

“How are you, beautiful?” asks Ms. Addy, after getting a hug. But Ms. Scott doesn't respond, doesn't even look at her.

Alzheimer's diagnosis illusive

Children born with Down syndrome are often slow to reach milestones such as sitting, standing, walking or talking. They are not a homogeneous group. As adults, some people with the condition can live on their own; others can't speak and need far more help.

This can make it hard for doctors to diagnosis Alzheimer's, especially if they don't know their patient well. During the first stage of the disease, people with Down syndrome are forgetful and not as capable as they once were, says Bruce McCreary, a Kingston physician who specializes in treating people with Down syndrome and has studied the link between the chromosomal condition and dementia.

It is important for physicians to rule out a number of other conditions that people with Down syndrome are susceptible to, which can also cause cognitive decline, he says. These include depression, sleep apnea, a malfunctioning thyroid and vitamin B12 deficiency. These are more treatable problems than Alzheimer's and may respond to medication, giving the patient more years of relative independence.

As the disease progresses, patients may get lost, forget how to dress themselves or bathe, and become incontinent. Some get aggressive or violent. Many develop epilepsy. Death usually comes after about eight years, Dr. McCreary says, often from respiratory failure after patients suck food into their lungs and develop pneumonia.

Many people with Alzheimer's love to wander, and those with Down syndrome are no exception. They can become frustrated if they reach the end of a hallway. Community Living London asked the local branch of the Alzheimer society for design advice for the Dissing Crescent group home.

The residents who aren't in wheelchairs, like Ms. Scott, happily travel a well-worn oval path through the kitchen and living room. The rooms are large, with high ceilings, and have recently been painted. The huge bathroom is equipped with a sling to lift people from the toilet to the tub, and out again.

The residents eat whenever they are hungry, and are allowed – within limits – to do as they please.

For a while, Ms. Scott was afraid of her bedroom, and would sleep on the sofa in the living room or standing up at the kitchen counter. For meals, she wanted nothing but Timbits and Tim Hortons coffee. Ms. Addy would prepare food that looked like little doughnuts and fill her Tim Hortons mug with juice.

“We had to get something nutritious into her,” she says.

These days, one of her favourite activities is dumping the contents of her sock drawer out on the floor. That's okay, Ms. McAndrew says.

“This is the mindset of a retirement home. Whatever you want to do in your retirement, we'll support you.”

There is room for five residents in the Dissing Crescent group home, and, Ms. McAndrew says, there are at least five more people in London who need the kind of specialized care it provides.

Sad stories abound

There are so many sad stories.

Elderly parents are often so stricken at the thought of putting their child in a nursing home they wait too long. But sometimes people with Down syndrome lose their independence and routines earlier than necessary because there is nowhere for them to go but a nursing home. It can be hard for them to fit in, because they are stronger and more physically active than many frail elderly.

Brenda McDougall, 55, is fortunate to live in a group home in Toronto with a higher care unit she could move to as her dementia progresses. She still recognizes her three sisters, who help look after her, and still visits them in their homes. But they worry about the next step, says Janet McDougall, one of Brenda's siblings.

“Where do we go after that?”

For Diane Pilon, who lives near Sudbury, the best place for her sister Carmen was at home, even during the final three years of her life. By then Carmen, 55, could no longer recognize her sister or her brother-in-law, could no longer talk or walk. She died March 20.

“I protected her. I didn't want her in an institution, or in a hospital where they would stick her with needles. I would do it all over again for her, because I loved her so much,” Ms. Pilon says.

“There wasn't a morning when we didn't go into her room and tell her she was beautiful. She was our chicken, our pop tart.”

For siblings, losing someone with Down syndrome can be a blow, especially if they were closely involved in their care.

At the group home in London, Tony and Joanne Beaulieu are sitting at the kitchen table, going through pictures of Bill, Tony's brother, who died March 19. His clothes are still hanging in the closet of his room, down the hall from Ms. Scott's. The trophy he won at a bowling tournament is on his desk.

Bill Beaulieu was an exceptional man. Born profoundly deaf, and with Down syndrome, he learned American sign language and was able to live in an apartment on his own.

He was a charmer, someone who loved to hold babies and make new friends, Tony says. Every Saturday afternoon, around 2 p.m., he would get dressed in his suit and troll the downtown hotels for a large wedding to crash. He would usually find one, enjoying free drinks and a good meal before saying his goodbyes.

In 1999, he started to put dirty dishes away in the cupboard and let food go bad in the fridge. It was clear something was wrong. He moved first to a regular group home. Three years ago, at age 47, he moved to Dissing Crescent.

The end came quickly. One minute he had a cold, the next day it was pneumonia, then he was in palliative care. Ms. McAndrew would visit Bill and his family every day in the hospital. She and Ms. Addy say they miss him terribly.

“He had two families,” his brother says.

Bill's room is next to that of Mary-Beth Allison, 59, who can no longer talk or walk. She used to be ladylike and polite but able to get her own way. She loved travelling, and her last trip was with Ms. Scott and Ms. Addy. The three took the train to Ottawa.

When she saw Lake Ontario, Ms. Scott yelled, “The Bahamas, we are in the Bahamas.” She and Ms. Allison remained convinced that they were on a southern, rather than northern vacation.

Now Ms. Allison hates leaving her $5,000 bed, designed to protect her from pressure sores. She needs to be fed a puréed diet, and looks frail. She spends much of her day watching cartoons, either in bed or in the living room.

She had a number of seizures before Christmas, and went into hospital. The doctors said she was ready for palliative care, but she improved enough to return to the group home.

“Beth is not ready to leave us yet,” Ms. McAndrew says.

As for Ms. Scott, she seems content to wander the house, and, now that the weather is warming up, she may venture out onto the porch. Every once in a while a gleam comes into her eye, as if she recognizes someone, or is remembering something funny, or the fragment of a once-familiar song. Sometimes she even sings it.

“You make me happy. You make me happy,” she croons as she heads through the living room.