Alzheimer’s bills ask state aid
Millie Romito of Boxford was diagnosed with Alzheimer’s disease when she was 63 years old. She knew she had the disease long before doctors confirmed it.
For years, she recalled yesterday, it had been difficult for her to remember names, faces, or simple daily routines like where she had put her car keys.
“I suffered silently long before then, because I just didn’t want to face it,’’ she told a group of legislators, as well as advocates who came to the State House to lobby for three bills the Alzheimer’s Association filed.
Romito, now 66 and the mother of five sons, said she dreads the day when she can no longer play with her two grandchildren.
“When they were born, I dreamed of sleepovers and tea parties,’’ she said. “The day may come when Alzheimer’s robs me of all my precious memories and then my life.’’
Romito does not want other Alzheimer’s patients and their families to wait to get help. She attended the lobbying events in hope of persuading lawmakers to pass the association’s bills and talk to them about the disease that affects 120,000 Massachusetts residents.
“There is no known cure or treatment to alter its course,’’ Romito said. “Imagine how hurtful it is for me to say those words. Not a day goes by I don’t pray for a cure.’’
James Wessler, president and chief executive officer of the Alzheimer’s Association, said he realizes the state will have a tough time funding new programs this year with a projected $1.5 billion budget gap, but he said now is the time to put plans in place to roll out over the next 5 to 7 years.
“The state is not going to invest a lot of money today,’’ he said. “But some of these things we would like to see implemented have minimum costs.’’
As baby boomers age, Wessler said, the number of people with Alzheimer’s is projected to increase 17 percent in Massachusetts.
Today, about 5.3 million people suffer from Alzheimer’s nationally, but in the next decade the number will reach 20 million, according to the Alzheimer’s Association.
One of the bills the private nonprofit organization refiled this session requires set criteria for care in nursing homes that specialize in Alzheimer’s care. The bill, sponsored by Representative Alice Wolf, Democrat of Cambridge, has been stuck in the Legislature for more than eight years.
Wolf urged the advocates and volunteers to talk to their legislators and tell their family stories.
Advocates say there are no specific standards set by the state about what constitutes appropriate care for those dealing with dementia.
Most nursing homes do a very good job, but some do not, says Jennifer Carter, manager of advocacy and public policy for the Alzeheimer’s Association.
“If they call it a special care unit, they should have certain standards,’’ she said.
Another bill, known as the Massachusetts Alzheimer’s Project Act, would create a separate office within the Office of Health and Human Services to help coordinate care for affected residents and families from diagnosis to end-of-life care plans. The office would help families find services, as well as promote awareness about ways to slow the progression of the disease once someone is diagnosed.
State Representative John Scibak, one of the bill’s sponsors, said so many people are affected by Alzheimer’s that the state needs to develop a plan to help people deal with it.
“It is so prevalent; it is a situation where virtually every family is affected,’’ said Scibak, who pointed out that the disease has run in his family for generations.
“I think anything we can do to introduce awareness,’’ he said. “People often take the diagnosis and don’t fully understand what resources are available.’’
A third bill deals with guardianships of people with Alzheimer’s, allowing for the transfer of guardianships across state borders and making it easier for people to move family members.