Wednesday, May 22, 2013
AUGUSTA — Like most parents, Sally Tartre imagined her three children enjoying a variety of life experiences with their grandmother. Graduations. Weddings. With a little luck, the births of great-grandchildren.
Sally Tartre of Kennebunk, whose late mother, Connie Roux, had Alzheimer's disease, spoke Thursday at a State House news conference presenting Maine's first strategic plan to address dementia-related issues. She holds a frame of photos of her three children taken with their grandmother six weeks before she died in December 2011.
Photo by Kelley Bouchard / Staff Writer
Sierra Tartre of Kennebunk with her grandmother Connie Roux six weeks before she died in December 2011 at age 77. She was diagnosed with Alzheimer's disease at age 74.
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ALZHEIMER’S EARLY WARNING SIGNS:
- Memory loss that disrupts daily life
- Challenges in planning or solving problems
- Difficulty completing tasks
- Confusion with time and place
- Trouble understanding visual images or spatial relationships
- New problems with speaking or writing words
- Misplacing things and inability to retrace steps
- Decreased or poor judgment
- Withdrawal from work or social activities
- Changes in mood or personality
That vision changed after Tartre's mother, Connie Roux, formerly of Lewiston and Cumberland, was diagnosed with Alzheimer's disease at age 74.
Roux died three years later, in December 2011, a shadow of her former self, said Tartre, who spoke Thursday at a State House news conference introducing Maine's first plan to address the disease.
As Roux declined, the Tartre family, including Amelia, Sam and Sierra, now ages 7 to 14, had to adjust their expectations as they continued to love and care for her.
"We looked forward to her future with her grandchildren," Tartre said. "We had no idea Alzheimer's disease would claim this future."
Tartre, who lives in Kennebunk, participated in the news conference organized by the Alzheimer's Association, Maine Chapter, to help raise awareness about a disease that afflicts about 30 of every 1,000 Mainers.
Raising awareness is a top recommendation in the "State Plan for Alzheimer's Disease and Related Dementias in Maine," along with improving diagnosis and care of the disease.
The plan was developed by a task force including advocates and officials from the Maine Office of Aging and Disability Services, the Maine Center for Disease Control and Prevention and the Maine Association of Area Agencies on Aging.
"We learned many things from Maine people who came together to develop and inform this plan," the plan says. "The most important is that those living with and affected by Alzheimer's disease are desperate for decisive and meaningful action."
Alzheimer's afflicts about 5.4 million Americans -- a figure that could climb to 16 million by 2050, according to the association. More than 37,000 of 1.3 million Mainers have the disease, and that number is expected to grow to 53,000 by 2020. The increase will occur because of population growth among the elderly, and improved diagnosis and awareness of the disease.
Despite this prevalence, the task force found widespread stigma and ignorance associated with the disease; late diagnoses and spotty and ineffective medical care; lack of support for family caregivers; and limited access to quality long-term care.
"The present reality is that even long-term care facilities are often not fully equipped to meet the intense demands of caring for those in the middle and later stages of the disease," the plan says. "We need to do a better job at recruiting, educating, and training our work force across all settings that make up the care continuum."
The plan grew out of legislation sponsored by Sen. Margaret Craven, D-Lewiston, who is co-chairwoman of the Legislature's Health and Human Services Committee.
"This impacts all of us," Craven said. "Us baby boomers, going down the road, are going to cost our kids a fortune."
Craven noted that Alzheimer's care in the United States costs $183 billion per year today, and it's expected to cost more than $1 trillion per year by 2020.
The average annual per-capita Medicare expenditure for a person with Alzheimer's disease or other dementia is three times higher than for a person without.
"If you don't care about Alzheimer's for any other reason, we need to care about the rising costs associated with the disease," said Laurie Trenholm, executive director of the association's Maine chapter.
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