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.
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.
The plan calls on state agencies, local businesses and philanthropic groups to make addressing Alzheimer’s a priority in Maine. The numbers say it warrants greater attention.
In 2007, the mortality rate for Alzheimer’s in the United States was 24.7 deaths per 100,000 individuals; in Maine, which has a higher percentage of seniors, the rate was 35.7 per 100,000. According to the U.S. Census, Maine is considered the oldest state in the nation, with the highest median age of 42.7 years.
The plan identifies Alzheimer’s as a public health crisis that must be “addressed with a thoughtful, integrated and cost-effective approach that is easier for individuals and families to navigate.”
One of 24 state plans, the Maine plan was created at the same time that a first-ever national plan was drafted under the direction of the U.S. Department of Health and Human Services.
The national plan takes a comprehensive approach to critical issues that individual states couldn’t address alone, including federal research to better understand and treat the disease.
On the local level, Tartre and her family have started a nonprofit organization, A Place to Start, to provide free assistance and support to Mainers facing similar challenges.
“It’s a crazy experience,” Tartre said. “You watch this person who is so healthy and vibrant go backwards almost to being a toddler, and yet visually they’re still the same person.”
Tartre said she hopes to share her experience so people can more easily access the care and services they need and avoid viewing Alzheimer’s as a death sentence, especially when some people live several years after diagnosis.
“Now is the time to make Alzheimer’s disease a priority in Maine and across the nation,” Tartre said.
Kelley Bouchard can be contacted at 791-6328 or at: