PART THREE: Eliminating the stigma of dementia will prove life does not end at diagnosis

Community Sep 23, 2015 by Kim Zarzour Richmond Hill Liberal

This was supposed to be their time.

With their son off to university and successful careers behind them, Bruce Rhodes and his wife, Liz, both 58, had expected these would be the years to reap the rewards of a full life together.

Instead, they are battling a disease together, one they both, at times, believe is worse than death.

“Ohhh, I am an idiot!” said Liz as she hops up and down in their sunny Richmond Hill kitchen.

“My brain is broken,” she smacks her hands against her head, letting out a long, keening wail.

Bruce pays no mind to her bizarre behaviour, grateful she is no longer talking about hating herself and wanting to die.

“We were so perfectly matched,” said Bruce, a retired software developer. “We were intellectually compatible and I trusted her completely.”

Now, due to dementia, their world has shrunk, travel and social gatherings long past.

Bruce spends his time trying to keep Liz safe, fed, bathed and properly medicated, struggling not to turn to booze or bash a hole in the wall in frustration.

Liz, who was an author and university professor before frontal-temporal dementia began destroying her brain, now lives in her own private world of confusion, battling his efforts to care for her, struggling to escape.

He can’t leave her alone and they rarely leave home. Outings are challenging and at times embarrassing, said Bruce, with his beloved wife now behaving like an unruly five year old.

“Dementia is vicious, just vicious,” he said.

It can be a lonely existence for the caregiver who must bear the burden of day-to-day life and for the person with dementia whose increasing confusion can leave them housebound and isolated.

Research has shown connected people are healthy people, and yet the Alzheimer’s Society 2014 survey reports 40 per cent of people with dementia felt lonely and 34 per cent do not feel part of their community.

Caregivers reported the same.

“It’s a family illness,” said occupational therapist Nira Rittenberg. “It affects the person cognitively and emotionally. Caregiving time is intense.”

Rittenberg, co-author of the guidebook Dementia: A Caregiver's Guide, oversees a psycho-educational support group. Families from as far away as Barrie and Orillia make the trek to Baycrest Health Sciences in Toronto seeking her help for a myriad of concerns – from what to do when the patient doesn’t want to attend doctor appointments or asks the same question repeatedly, to issues stirred up between siblings caring for parents.

There is an emotional toll, “losing that personhood is hard for everyone to watch,” along with a physical and financial one, and it may be why 80 per cent of caregivers end up with their own disorders and issues, she said.

The person with dementia, meanwhile, finds himself increasingly isolated.

In an Alzheimer Disease International survey of more than 2,400 people from 54 countries, more than 75 per cent of respondents with dementia said they’ve noticed a negative stigma about the disease, most commonly being discounted or marginalized by others.

Chair Dr. Jacob Roy Kuriakose is calling for urgent action and said the focus on late-stage dementia and a belief that nothing can be done to help leads to hopelessness and fear of negative reactions.

“People start fearing ‘viral dementia,’” Rittenberg said. “It’s not that they think they’ll ‘catch’ it, but they may hide from it because they can’t deal with it, especially if they’re of the same age cohort.”

Unlike those with physical challenges, there is no wheelchair or other visible indication of a disability. As one patient puts it, “when something’s wrong with your mind, it feels like something is wrong with you”.

In the early stages, those with dementia may become withdrawn, aware they can’t keep up in social settings, but Maisie Jackson is determined not to let that happen.

The Niagara Falls resident said she was devastated to learn she had dementia two years ago.

“I thought the end had come, my life was over. I didn’t tell anyone.”

She worried she would waste away like her mother, aunt and older sister before her, alone in a rocking chair, clutching a baby doll.

Instead, she clutches a thick daybook jam-packed with appointments, conferences and meetings at the local Alzheimer’s society.

“The society gave me my life back,” said the former director of sales at Niagara’s Pillar and Post Inn.

Her days are busy mentoring others, attending board meetings and giving presentations across the province. She no longer hides her diagnosis.

“If I’m having trouble, I just say ‘give me a moment please, I have dementia.’”

Communicating with others about the disease has given her life new purpose, she said.

Jackson has learned life does not end when the diagnosis begins and a slew of promising new programs bolsters that view – from as far away as Denmark, where an entire enclosed village was created for dementia residents, to the Kawartha town of Bobcaygeon, where blue umbrella logos open doors, and minds, for those experiencing cognitive decline.

Hogewey village, in the Netherlands, has an award-winning, ground-breaking approach to dementia with 23 houses differentiated by lifestyle and an enclosed, secure neighbourhood with streets, gardens, restaurants, a theatre and a supermarket.

It may be the gold standard, but Hogewey’s respectful approach is being adapted in other ways, closer to home.

During the summer months, Bobcaygeon is bustling with tourists, cottagers and retirees.

It’s also speckled with little blue umbrella decals that let those with dementia know they are welcome.

Dyan Wellwood and Larry Galea both proudly sport the umbrella pin on their lapels as they share a laugh over lunch at For the Halibut. The popular local eatery also displays an umbrella on its door.

The friends are comfortable here because this is a dementia-friendly establishment and they have dementia. They may forget what they’ve ordered or have trouble with the debit machine, but employees at this restaurant, like a growing number of businesses in town, take their gaps and gaffes in stride because they’re trained how to assist.

The blue umbrella is a unique project garnering interest across Canada.

Designed to combat stigma and promote awareness, the program provides umbrella pins to those with dementia. Window decals are given to businesses trained to help with challenges such as bank machines, crowded spaces and communicating with staff.

Nearly 50 of an estimated 200 Bobcaygeon residents with dementia have registered to wear the pins since it was launched last April, said Pat Finkle, the local Alzheimer Society’s client support co-ordinator.

About 70 businesses have joined so far, including British Empire Fuels.

In a town where 80 per cent of residents are retirees, owner Robert Whyte said he believes it makes sense.

“There are times where you just know things aren’t being communicated or understood. This teaches you compassion and patience...You realize they’re not crazy, they’re normal human beings who have an illness and just want to live their lives.”

“We’ve done phenomenally well,” Finkle said. “People are talking about it more and the person with dementia is being talked with more, too, and engaged in the community. The more people who are out wearing that blue umbrella, the more we are changing the perception of what dementia is.”

Buoyed by the Bobcaygeon success, the Alzheimer Society of Ontario has decided to expand the program to five more communities across the province and is seeking funding to help make it grow.

A similar program, Dementia Friends, was launched in June through the Alzheimer Society of Canada.

The society has received $1.8 million in federal funding to launch the program modeled after similar ones in the U.K. and Japan.

“This program is primarily personal awareness-raising, finding out the warning signs and what to do to improve quality of life for those who have it,” said the society’s CEO Mimi Lowi-Young.

The goal: one million Canadians to sign on at www.DementiaFriends.ca by 2017.

Elsewhere in Ontario, new approaches take aim at attitudes and quality of life, from an upscale dementia health club and spa, to programs that bring music, drama, clowns and purposeful activity into their lives.

At Baycrest’s Innovation, Technology and Design Lab, Bianca Stern is combining art, science and culture to explore ways to enhance lives.

With the country’s dementia cases expected to skyrocket from 747,000 today to 1.4 million by 2031, according to Alzheimer Society of Canada, Stern said the tide may be turning on how we prepare.

“The baby boom generation makes its mark in the world wherever it goes, and as they get older, they will change what dementia looks like, too.”

PART THREE: Eliminating the stigma of dementia will prove life does not end at diagnosis

A Metroland Media series on Seniors & Dementia

Community Sep 23, 2015 by Kim Zarzour Richmond Hill Liberal

This was supposed to be their time.

With their son off to university and successful careers behind them, Bruce Rhodes and his wife, Liz, both 58, had expected these would be the years to reap the rewards of a full life together.

Instead, they are battling a disease together, one they both, at times, believe is worse than death.

“Ohhh, I am an idiot!” said Liz as she hops up and down in their sunny Richmond Hill kitchen.

Related Content

“My brain is broken,” she smacks her hands against her head, letting out a long, keening wail.

Bruce pays no mind to her bizarre behaviour, grateful she is no longer talking about hating herself and wanting to die.

“We were so perfectly matched,” said Bruce, a retired software developer. “We were intellectually compatible and I trusted her completely.”

Now, due to dementia, their world has shrunk, travel and social gatherings long past.

Bruce spends his time trying to keep Liz safe, fed, bathed and properly medicated, struggling not to turn to booze or bash a hole in the wall in frustration.

Liz, who was an author and university professor before frontal-temporal dementia began destroying her brain, now lives in her own private world of confusion, battling his efforts to care for her, struggling to escape.

He can’t leave her alone and they rarely leave home. Outings are challenging and at times embarrassing, said Bruce, with his beloved wife now behaving like an unruly five year old.

“Dementia is vicious, just vicious,” he said.

It can be a lonely existence for the caregiver who must bear the burden of day-to-day life and for the person with dementia whose increasing confusion can leave them housebound and isolated.

Research has shown connected people are healthy people, and yet the Alzheimer’s Society 2014 survey reports 40 per cent of people with dementia felt lonely and 34 per cent do not feel part of their community.

Caregivers reported the same.

“It’s a family illness,” said occupational therapist Nira Rittenberg. “It affects the person cognitively and emotionally. Caregiving time is intense.”

Rittenberg, co-author of the guidebook Dementia: A Caregiver's Guide, oversees a psycho-educational support group. Families from as far away as Barrie and Orillia make the trek to Baycrest Health Sciences in Toronto seeking her help for a myriad of concerns – from what to do when the patient doesn’t want to attend doctor appointments or asks the same question repeatedly, to issues stirred up between siblings caring for parents.

There is an emotional toll, “losing that personhood is hard for everyone to watch,” along with a physical and financial one, and it may be why 80 per cent of caregivers end up with their own disorders and issues, she said.

The person with dementia, meanwhile, finds himself increasingly isolated.

In an Alzheimer Disease International survey of more than 2,400 people from 54 countries, more than 75 per cent of respondents with dementia said they’ve noticed a negative stigma about the disease, most commonly being discounted or marginalized by others.

Chair Dr. Jacob Roy Kuriakose is calling for urgent action and said the focus on late-stage dementia and a belief that nothing can be done to help leads to hopelessness and fear of negative reactions.

“People start fearing ‘viral dementia,’” Rittenberg said. “It’s not that they think they’ll ‘catch’ it, but they may hide from it because they can’t deal with it, especially if they’re of the same age cohort.”

Unlike those with physical challenges, there is no wheelchair or other visible indication of a disability. As one patient puts it, “when something’s wrong with your mind, it feels like something is wrong with you”.

In the early stages, those with dementia may become withdrawn, aware they can’t keep up in social settings, but Maisie Jackson is determined not to let that happen.

The Niagara Falls resident said she was devastated to learn she had dementia two years ago.

“I thought the end had come, my life was over. I didn’t tell anyone.”

She worried she would waste away like her mother, aunt and older sister before her, alone in a rocking chair, clutching a baby doll.

Instead, she clutches a thick daybook jam-packed with appointments, conferences and meetings at the local Alzheimer’s society.

“The society gave me my life back,” said the former director of sales at Niagara’s Pillar and Post Inn.

Her days are busy mentoring others, attending board meetings and giving presentations across the province. She no longer hides her diagnosis.

“If I’m having trouble, I just say ‘give me a moment please, I have dementia.’”

Communicating with others about the disease has given her life new purpose, she said.

Jackson has learned life does not end when the diagnosis begins and a slew of promising new programs bolsters that view – from as far away as Denmark, where an entire enclosed village was created for dementia residents, to the Kawartha town of Bobcaygeon, where blue umbrella logos open doors, and minds, for those experiencing cognitive decline.

Hogewey village, in the Netherlands, has an award-winning, ground-breaking approach to dementia with 23 houses differentiated by lifestyle and an enclosed, secure neighbourhood with streets, gardens, restaurants, a theatre and a supermarket.

It may be the gold standard, but Hogewey’s respectful approach is being adapted in other ways, closer to home.

During the summer months, Bobcaygeon is bustling with tourists, cottagers and retirees.

It’s also speckled with little blue umbrella decals that let those with dementia know they are welcome.

Dyan Wellwood and Larry Galea both proudly sport the umbrella pin on their lapels as they share a laugh over lunch at For the Halibut. The popular local eatery also displays an umbrella on its door.

The friends are comfortable here because this is a dementia-friendly establishment and they have dementia. They may forget what they’ve ordered or have trouble with the debit machine, but employees at this restaurant, like a growing number of businesses in town, take their gaps and gaffes in stride because they’re trained how to assist.

The blue umbrella is a unique project garnering interest across Canada.

Designed to combat stigma and promote awareness, the program provides umbrella pins to those with dementia. Window decals are given to businesses trained to help with challenges such as bank machines, crowded spaces and communicating with staff.

Nearly 50 of an estimated 200 Bobcaygeon residents with dementia have registered to wear the pins since it was launched last April, said Pat Finkle, the local Alzheimer Society’s client support co-ordinator.

About 70 businesses have joined so far, including British Empire Fuels.

In a town where 80 per cent of residents are retirees, owner Robert Whyte said he believes it makes sense.

“There are times where you just know things aren’t being communicated or understood. This teaches you compassion and patience...You realize they’re not crazy, they’re normal human beings who have an illness and just want to live their lives.”

“We’ve done phenomenally well,” Finkle said. “People are talking about it more and the person with dementia is being talked with more, too, and engaged in the community. The more people who are out wearing that blue umbrella, the more we are changing the perception of what dementia is.”

Buoyed by the Bobcaygeon success, the Alzheimer Society of Ontario has decided to expand the program to five more communities across the province and is seeking funding to help make it grow.

A similar program, Dementia Friends, was launched in June through the Alzheimer Society of Canada.

The society has received $1.8 million in federal funding to launch the program modeled after similar ones in the U.K. and Japan.

“This program is primarily personal awareness-raising, finding out the warning signs and what to do to improve quality of life for those who have it,” said the society’s CEO Mimi Lowi-Young.

The goal: one million Canadians to sign on at www.DementiaFriends.ca by 2017.

Elsewhere in Ontario, new approaches take aim at attitudes and quality of life, from an upscale dementia health club and spa, to programs that bring music, drama, clowns and purposeful activity into their lives.

At Baycrest’s Innovation, Technology and Design Lab, Bianca Stern is combining art, science and culture to explore ways to enhance lives.

With the country’s dementia cases expected to skyrocket from 747,000 today to 1.4 million by 2031, according to Alzheimer Society of Canada, Stern said the tide may be turning on how we prepare.

“The baby boom generation makes its mark in the world wherever it goes, and as they get older, they will change what dementia looks like, too.”

PART THREE: Eliminating the stigma of dementia will prove life does not end at diagnosis

A Metroland Media series on Seniors & Dementia

Community Sep 23, 2015 by Kim Zarzour Richmond Hill Liberal

This was supposed to be their time.

With their son off to university and successful careers behind them, Bruce Rhodes and his wife, Liz, both 58, had expected these would be the years to reap the rewards of a full life together.

Instead, they are battling a disease together, one they both, at times, believe is worse than death.

“Ohhh, I am an idiot!” said Liz as she hops up and down in their sunny Richmond Hill kitchen.

Related Content

“My brain is broken,” she smacks her hands against her head, letting out a long, keening wail.

Bruce pays no mind to her bizarre behaviour, grateful she is no longer talking about hating herself and wanting to die.

“We were so perfectly matched,” said Bruce, a retired software developer. “We were intellectually compatible and I trusted her completely.”

Now, due to dementia, their world has shrunk, travel and social gatherings long past.

Bruce spends his time trying to keep Liz safe, fed, bathed and properly medicated, struggling not to turn to booze or bash a hole in the wall in frustration.

Liz, who was an author and university professor before frontal-temporal dementia began destroying her brain, now lives in her own private world of confusion, battling his efforts to care for her, struggling to escape.

He can’t leave her alone and they rarely leave home. Outings are challenging and at times embarrassing, said Bruce, with his beloved wife now behaving like an unruly five year old.

“Dementia is vicious, just vicious,” he said.

It can be a lonely existence for the caregiver who must bear the burden of day-to-day life and for the person with dementia whose increasing confusion can leave them housebound and isolated.

Research has shown connected people are healthy people, and yet the Alzheimer’s Society 2014 survey reports 40 per cent of people with dementia felt lonely and 34 per cent do not feel part of their community.

Caregivers reported the same.

“It’s a family illness,” said occupational therapist Nira Rittenberg. “It affects the person cognitively and emotionally. Caregiving time is intense.”

Rittenberg, co-author of the guidebook Dementia: A Caregiver's Guide, oversees a psycho-educational support group. Families from as far away as Barrie and Orillia make the trek to Baycrest Health Sciences in Toronto seeking her help for a myriad of concerns – from what to do when the patient doesn’t want to attend doctor appointments or asks the same question repeatedly, to issues stirred up between siblings caring for parents.

There is an emotional toll, “losing that personhood is hard for everyone to watch,” along with a physical and financial one, and it may be why 80 per cent of caregivers end up with their own disorders and issues, she said.

The person with dementia, meanwhile, finds himself increasingly isolated.

In an Alzheimer Disease International survey of more than 2,400 people from 54 countries, more than 75 per cent of respondents with dementia said they’ve noticed a negative stigma about the disease, most commonly being discounted or marginalized by others.

Chair Dr. Jacob Roy Kuriakose is calling for urgent action and said the focus on late-stage dementia and a belief that nothing can be done to help leads to hopelessness and fear of negative reactions.

“People start fearing ‘viral dementia,’” Rittenberg said. “It’s not that they think they’ll ‘catch’ it, but they may hide from it because they can’t deal with it, especially if they’re of the same age cohort.”

Unlike those with physical challenges, there is no wheelchair or other visible indication of a disability. As one patient puts it, “when something’s wrong with your mind, it feels like something is wrong with you”.

In the early stages, those with dementia may become withdrawn, aware they can’t keep up in social settings, but Maisie Jackson is determined not to let that happen.

The Niagara Falls resident said she was devastated to learn she had dementia two years ago.

“I thought the end had come, my life was over. I didn’t tell anyone.”

She worried she would waste away like her mother, aunt and older sister before her, alone in a rocking chair, clutching a baby doll.

Instead, she clutches a thick daybook jam-packed with appointments, conferences and meetings at the local Alzheimer’s society.

“The society gave me my life back,” said the former director of sales at Niagara’s Pillar and Post Inn.

Her days are busy mentoring others, attending board meetings and giving presentations across the province. She no longer hides her diagnosis.

“If I’m having trouble, I just say ‘give me a moment please, I have dementia.’”

Communicating with others about the disease has given her life new purpose, she said.

Jackson has learned life does not end when the diagnosis begins and a slew of promising new programs bolsters that view – from as far away as Denmark, where an entire enclosed village was created for dementia residents, to the Kawartha town of Bobcaygeon, where blue umbrella logos open doors, and minds, for those experiencing cognitive decline.

Hogewey village, in the Netherlands, has an award-winning, ground-breaking approach to dementia with 23 houses differentiated by lifestyle and an enclosed, secure neighbourhood with streets, gardens, restaurants, a theatre and a supermarket.

It may be the gold standard, but Hogewey’s respectful approach is being adapted in other ways, closer to home.

During the summer months, Bobcaygeon is bustling with tourists, cottagers and retirees.

It’s also speckled with little blue umbrella decals that let those with dementia know they are welcome.

Dyan Wellwood and Larry Galea both proudly sport the umbrella pin on their lapels as they share a laugh over lunch at For the Halibut. The popular local eatery also displays an umbrella on its door.

The friends are comfortable here because this is a dementia-friendly establishment and they have dementia. They may forget what they’ve ordered or have trouble with the debit machine, but employees at this restaurant, like a growing number of businesses in town, take their gaps and gaffes in stride because they’re trained how to assist.

The blue umbrella is a unique project garnering interest across Canada.

Designed to combat stigma and promote awareness, the program provides umbrella pins to those with dementia. Window decals are given to businesses trained to help with challenges such as bank machines, crowded spaces and communicating with staff.

Nearly 50 of an estimated 200 Bobcaygeon residents with dementia have registered to wear the pins since it was launched last April, said Pat Finkle, the local Alzheimer Society’s client support co-ordinator.

About 70 businesses have joined so far, including British Empire Fuels.

In a town where 80 per cent of residents are retirees, owner Robert Whyte said he believes it makes sense.

“There are times where you just know things aren’t being communicated or understood. This teaches you compassion and patience...You realize they’re not crazy, they’re normal human beings who have an illness and just want to live their lives.”

“We’ve done phenomenally well,” Finkle said. “People are talking about it more and the person with dementia is being talked with more, too, and engaged in the community. The more people who are out wearing that blue umbrella, the more we are changing the perception of what dementia is.”

Buoyed by the Bobcaygeon success, the Alzheimer Society of Ontario has decided to expand the program to five more communities across the province and is seeking funding to help make it grow.

A similar program, Dementia Friends, was launched in June through the Alzheimer Society of Canada.

The society has received $1.8 million in federal funding to launch the program modeled after similar ones in the U.K. and Japan.

“This program is primarily personal awareness-raising, finding out the warning signs and what to do to improve quality of life for those who have it,” said the society’s CEO Mimi Lowi-Young.

The goal: one million Canadians to sign on at www.DementiaFriends.ca by 2017.

Elsewhere in Ontario, new approaches take aim at attitudes and quality of life, from an upscale dementia health club and spa, to programs that bring music, drama, clowns and purposeful activity into their lives.

At Baycrest’s Innovation, Technology and Design Lab, Bianca Stern is combining art, science and culture to explore ways to enhance lives.

With the country’s dementia cases expected to skyrocket from 747,000 today to 1.4 million by 2031, according to Alzheimer Society of Canada, Stern said the tide may be turning on how we prepare.

“The baby boom generation makes its mark in the world wherever it goes, and as they get older, they will change what dementia looks like, too.”