Richard Taylor, who retired from his psychology practice in 2001 when he was diagnosed with Alzheimer's disease, speaks at Garden Spot Village on Tuesday. (Vinny Tennis / Intelligencer Journal)
With those simple words, retired psychologist Richard Taylor gets the message across that people with dementia are just that — real, whole people.
Taylor, who was diagnosed with the disease in 2001 at age 57, spoke Tuesday about his experience with Alzheimer's to dementia caregivers and health care professionals at Garden Spot Village in New Holland.
Taylor, who wrote the book "Alzheimer's From the Inside Out," helped establish the Alzheimer's Association's Dementia Advisory Committee and received the 2009 John Mackey Award for Excellence in Dementia Care from Johns Hopkins University School of Medicine.
He recently returned from Singapore, where he addressed the World Alzheimer's Disease conference.
Alzheimer's disease affects an estimated 5.3 million Americans of all ages, and other forms of dementia affect another 4 million, Taylor said.
Although Alzheimer's can strike people in their 20s or 30s, the average age of diagnosis is 72, because people hide or cover up their symptoms, Taylor said.
People with dementia live an average of 10 years after their diagnosis, he said.
But Taylor said he doesn't like the term "the long good-bye" when describing dementia.
"Who wants to say good-bye every day? That's why we don't have friends," he said. "We're still a whole person. We're as robust as anybody, except when we're not treated like one. Then, over time, we are fragile."
Taylor recited some typical exchanges between caregivers and their dementia patients: "What do you want to eat?" "I don't care." "What do you want to wear?" "I don't care. My son takes care of that." "Where do you want to go?" "I don't know." "Well, what do you want to do?" "Oh, just sit here."
"That's wrong," Taylor said. "It's a moral imperative. Everyone should live as full a life as they can. Everyone deserves to be treated as a whole person. We're called 'shells of ourselves.' 'Richard is gone. I don't know who he is today.' We assume Richard is not home, but Richard is home. He's just not answering the door the way others do."
Taylor told the crowd not to worry what "language system" they use around people with dementia as long as they treat them as people who are at home.
"My wife does all the talking for me. She does all the feeling, all the thinking in the family," Taylor said. "I don't talk back sometimes because I'm unsure of my self-esteem. I get it wrong once in a while."
But he should talk back, and so should everyone with dementia, he said.
"We don't speak up," Taylor said. "I ran and hid in my closet for three years (after his diagnosis). I had a really good practice, and I gave it up. We don't ask doctors if they have dementia, so I thought it was unethical (to continue)."
So why does Taylor speak up?
"I lost my sense of purpose. I quit my job, couldn't teach and stopped driving. I didn't know how profound it was to stop driving. You get stuck in your own house. No wonder people think Oprah is a great show or watch Jerry Springer. You sleep longer. What's the reason to get out of bed? Why take a shower every morning?
"I speak up because I want people to know what it's like to have dementia. That's my purpose in life. I get the chance to speak from my heart for 1½ hours. That's just pure me."
Taylor also encourages others with dementia to speak up for themselves so everyone knows they are whole people and should be treated as such.
He said people don't know how to act around those with Alzheimer's because they have no role models.
"Little girls don't say, 'This doll has a broken arm and this one has Alzheimer's.' We don't play cowboys and Alzheimer's because we don't know what it's like to have a cognitive disorder," Taylor said. "There is empathy and sympathy with any other disease because we're working from the same database, but with a cognitive disorder we can only get so close."
What people with dementia want is for health care professionals, friends and family to say, "Look, there's more to life than bingo or Trivial Pursuit."
"You have the capacity to find the little light in their eyes and keep it glowing," Taylor told the crowd. "I want you to challenge me. … Don't dumb me down to a 2-year-old, a 4-year-old or a 12-year-old. I'm not a child. I'm an adult acting like a child."
Taylor said he isn't against reminiscing with those who have dementia, but the amount of time spent reminiscing about the past is out of proportion with time spent on what is happening today.
"Say hello to me and take the time to hear about what I have to say about today. You've got to give us the opportunity. How can we test reality without the opportunity? No wonder we fall back into a cloudy, delusional world."
To learn more about Taylor, Alzheimer's disease and other dementias, visit his Web site, www.richardtaylorphd.com. To subscribe to his newsletter, e-mail Taylor at richardtaylorphd@gmail.com.
E-mail: lvaningen@lnpnews.com
Copyright 2004-2008 Lancaster Online.com
June 3, 2009
USA: Man's reflection on Alzheimer's - 'I'm not a child'
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NEW HOLLAND, Lancaster, Pennsylvania / Intelligencer Journal / June 3, 2009
By Lori Van Ingen, Staff Writer
A retired psychologist with Alzheimer's disease addressed a group of health care workers to give them an inside look at life for a dementia patient.
"Hi, my name is Richard. I have Alzheimer's disease."
Richard Taylor, who retired from his psychology practice in 2001 when he was diagnosed with Alzheimer's disease, speaks at Garden Spot Village on Tuesday. (Vinny Tennis / Intelligencer Journal)
With those simple words, retired psychologist Richard Taylor gets the message across that people with dementia are just that — real, whole people.
Taylor, who was diagnosed with the disease in 2001 at age 57, spoke Tuesday about his experience with Alzheimer's to dementia caregivers and health care professionals at Garden Spot Village in New Holland.
Taylor, who wrote the book "Alzheimer's From the Inside Out," helped establish the Alzheimer's Association's Dementia Advisory Committee and received the 2009 John Mackey Award for Excellence in Dementia Care from Johns Hopkins University School of Medicine.
He recently returned from Singapore, where he addressed the World Alzheimer's Disease conference.
Alzheimer's disease affects an estimated 5.3 million Americans of all ages, and other forms of dementia affect another 4 million, Taylor said.
Although Alzheimer's can strike people in their 20s or 30s, the average age of diagnosis is 72, because people hide or cover up their symptoms, Taylor said.
People with dementia live an average of 10 years after their diagnosis, he said.
But Taylor said he doesn't like the term "the long good-bye" when describing dementia.
"Who wants to say good-bye every day? That's why we don't have friends," he said. "We're still a whole person. We're as robust as anybody, except when we're not treated like one. Then, over time, we are fragile."
Taylor recited some typical exchanges between caregivers and their dementia patients: "What do you want to eat?" "I don't care." "What do you want to wear?" "I don't care. My son takes care of that." "Where do you want to go?" "I don't know." "Well, what do you want to do?" "Oh, just sit here."
"That's wrong," Taylor said. "It's a moral imperative. Everyone should live as full a life as they can. Everyone deserves to be treated as a whole person. We're called 'shells of ourselves.' 'Richard is gone. I don't know who he is today.' We assume Richard is not home, but Richard is home. He's just not answering the door the way others do."
Taylor told the crowd not to worry what "language system" they use around people with dementia as long as they treat them as people who are at home.
"My wife does all the talking for me. She does all the feeling, all the thinking in the family," Taylor said. "I don't talk back sometimes because I'm unsure of my self-esteem. I get it wrong once in a while."
But he should talk back, and so should everyone with dementia, he said.
"We don't speak up," Taylor said. "I ran and hid in my closet for three years (after his diagnosis). I had a really good practice, and I gave it up. We don't ask doctors if they have dementia, so I thought it was unethical (to continue)."
So why does Taylor speak up?
"I lost my sense of purpose. I quit my job, couldn't teach and stopped driving. I didn't know how profound it was to stop driving. You get stuck in your own house. No wonder people think Oprah is a great show or watch Jerry Springer. You sleep longer. What's the reason to get out of bed? Why take a shower every morning?
"I speak up because I want people to know what it's like to have dementia. That's my purpose in life. I get the chance to speak from my heart for 1½ hours. That's just pure me."
Taylor also encourages others with dementia to speak up for themselves so everyone knows they are whole people and should be treated as such.
He said people don't know how to act around those with Alzheimer's because they have no role models.
"Little girls don't say, 'This doll has a broken arm and this one has Alzheimer's.' We don't play cowboys and Alzheimer's because we don't know what it's like to have a cognitive disorder," Taylor said. "There is empathy and sympathy with any other disease because we're working from the same database, but with a cognitive disorder we can only get so close."
What people with dementia want is for health care professionals, friends and family to say, "Look, there's more to life than bingo or Trivial Pursuit."
"You have the capacity to find the little light in their eyes and keep it glowing," Taylor told the crowd. "I want you to challenge me. … Don't dumb me down to a 2-year-old, a 4-year-old or a 12-year-old. I'm not a child. I'm an adult acting like a child."
Taylor said he isn't against reminiscing with those who have dementia, but the amount of time spent reminiscing about the past is out of proportion with time spent on what is happening today.
"Say hello to me and take the time to hear about what I have to say about today. You've got to give us the opportunity. How can we test reality without the opportunity? No wonder we fall back into a cloudy, delusional world."
To learn more about Taylor, Alzheimer's disease and other dementias, visit his Web site, www.richardtaylorphd.com. To subscribe to his newsletter, e-mail Taylor at richardtaylorphd@gmail.com.
E-mail: lvaningen@lnpnews.com
Copyright 2004-2008 Lancaster Online.com
Richard Taylor, who retired from his psychology practice in 2001 when he was diagnosed with Alzheimer's disease, speaks at Garden Spot Village on Tuesday. (Vinny Tennis / Intelligencer Journal)
With those simple words, retired psychologist Richard Taylor gets the message across that people with dementia are just that — real, whole people.
Taylor, who was diagnosed with the disease in 2001 at age 57, spoke Tuesday about his experience with Alzheimer's to dementia caregivers and health care professionals at Garden Spot Village in New Holland.
Taylor, who wrote the book "Alzheimer's From the Inside Out," helped establish the Alzheimer's Association's Dementia Advisory Committee and received the 2009 John Mackey Award for Excellence in Dementia Care from Johns Hopkins University School of Medicine.
He recently returned from Singapore, where he addressed the World Alzheimer's Disease conference.
Alzheimer's disease affects an estimated 5.3 million Americans of all ages, and other forms of dementia affect another 4 million, Taylor said.
Although Alzheimer's can strike people in their 20s or 30s, the average age of diagnosis is 72, because people hide or cover up their symptoms, Taylor said.
People with dementia live an average of 10 years after their diagnosis, he said.
But Taylor said he doesn't like the term "the long good-bye" when describing dementia.
"Who wants to say good-bye every day? That's why we don't have friends," he said. "We're still a whole person. We're as robust as anybody, except when we're not treated like one. Then, over time, we are fragile."
Taylor recited some typical exchanges between caregivers and their dementia patients: "What do you want to eat?" "I don't care." "What do you want to wear?" "I don't care. My son takes care of that." "Where do you want to go?" "I don't know." "Well, what do you want to do?" "Oh, just sit here."
"That's wrong," Taylor said. "It's a moral imperative. Everyone should live as full a life as they can. Everyone deserves to be treated as a whole person. We're called 'shells of ourselves.' 'Richard is gone. I don't know who he is today.' We assume Richard is not home, but Richard is home. He's just not answering the door the way others do."
Taylor told the crowd not to worry what "language system" they use around people with dementia as long as they treat them as people who are at home.
"My wife does all the talking for me. She does all the feeling, all the thinking in the family," Taylor said. "I don't talk back sometimes because I'm unsure of my self-esteem. I get it wrong once in a while."
But he should talk back, and so should everyone with dementia, he said.
"We don't speak up," Taylor said. "I ran and hid in my closet for three years (after his diagnosis). I had a really good practice, and I gave it up. We don't ask doctors if they have dementia, so I thought it was unethical (to continue)."
So why does Taylor speak up?
"I lost my sense of purpose. I quit my job, couldn't teach and stopped driving. I didn't know how profound it was to stop driving. You get stuck in your own house. No wonder people think Oprah is a great show or watch Jerry Springer. You sleep longer. What's the reason to get out of bed? Why take a shower every morning?
"I speak up because I want people to know what it's like to have dementia. That's my purpose in life. I get the chance to speak from my heart for 1½ hours. That's just pure me."
Taylor also encourages others with dementia to speak up for themselves so everyone knows they are whole people and should be treated as such.
He said people don't know how to act around those with Alzheimer's because they have no role models.
"Little girls don't say, 'This doll has a broken arm and this one has Alzheimer's.' We don't play cowboys and Alzheimer's because we don't know what it's like to have a cognitive disorder," Taylor said. "There is empathy and sympathy with any other disease because we're working from the same database, but with a cognitive disorder we can only get so close."
What people with dementia want is for health care professionals, friends and family to say, "Look, there's more to life than bingo or Trivial Pursuit."
"You have the capacity to find the little light in their eyes and keep it glowing," Taylor told the crowd. "I want you to challenge me. … Don't dumb me down to a 2-year-old, a 4-year-old or a 12-year-old. I'm not a child. I'm an adult acting like a child."
Taylor said he isn't against reminiscing with those who have dementia, but the amount of time spent reminiscing about the past is out of proportion with time spent on what is happening today.
"Say hello to me and take the time to hear about what I have to say about today. You've got to give us the opportunity. How can we test reality without the opportunity? No wonder we fall back into a cloudy, delusional world."
To learn more about Taylor, Alzheimer's disease and other dementias, visit his Web site, www.richardtaylorphd.com. To subscribe to his newsletter, e-mail Taylor at richardtaylorphd@gmail.com.
E-mail: lvaningen@lnpnews.com
Copyright 2004-2008 Lancaster Online.com
