ALZHEIMER’S MEASURES RECEIVE BIPARTISAN SUPPORT

Legislation seeks in-depth dementia diagnosis training

SACRAMENTO

More than 250 volunteers with the Alzheimer’s Association gathered this month at the state Capitol in Sacramento wearing emblematic purple sashes for State Advocacy Day.

Many of them were family members and caregivers of people diagnosed with Alzheimer’s disease and dementia. Others had been diagnosed with the disease themselves. But all of them were looking for support of two bills that had just been introduced in the Legislature:

• AB 2047, which would fund the development of a train-the-trainer toolkit for physicians so they can more accurately diagnose dementia. It would also allocate between $5 million and $10 million over the course of three years to develop, distribute and evaluate the program.

• AB 2048, which would require the California Department of Aging to update its 2003 “Partnering with Your Doctor” booklet. The existing version guides people through the experience of memory loss, being diagnosed with dementia and learning about care options.

Updating the booklet to reflect the latest research and developments will empower families as they make caregiving decisions, said Joshua Bohannan, public policy manager for the Alzheimer’s Association San Diego chapter.

“It’s important for all Californians to have the information they need when they go into a doctor’s office to create a care plan,” Bohannan said. “By giving somebody more information before their doctor’s visit and after their doctor’s visit, we can set them up in a much better position for the longterm care aspect that comes with dementia.”

Bohannan said so far, 13 Assembly members have signed on as co-authors of both bills, which were introduced by Assembly members Cecilia Aguiar-curry and Monique Limón. Four state senators have also signed on to show their support.

The hope among advocates is that the combination of both an updated guide for families and increased dementia knowledge among physicians may lead to people being diagnosed earlier.

Early diagnosis means that families can make decisions about long-term options while the care recipient can still actively participate in the conversation, according to the Alzheimer’s Association.

It also means someone can benefit from Alzheimer’s medications, which are generally only effective in the early or middle stages of the disease, according to the National Institute on Aging.

Aguiar-curry, D-winters, was honored as the Alzheimer’s Association’s legislator of the year during State Advocacy Day on Feb. 5.

Having friends and family members who have lived with Alzheimer’s and dementia is what Aguiar-curry said inspired her to support the new pieces of legislation. One of her friends, Alzheimer’s advocate Pam Montana, told Aguiar-curry that she just wished she’d known about her diagnosis sooner.

“It took her almost a year or a year and a half to actually get a diagnosis,” Aguiarcurry said. “In that time she could have done planning with her family, made some plans for her future and her caregivers.”

One advocate, Mark Mcdonald, said the early diagnosis support would help families to avoid what he had to go through. When his mother started swearing out of nowhere, he knew something was wrong, but he didn’t know much about dementia at the time.

“She hated cussing, but she started to drop a couple of F-bombs here and there,” he said. “Then she got pulled over by the police and she was disoriented, so she got a ticket. When the police pull you over, you can lose your license if they suspect dementia.”

Mcdonald and his family took their mother for cognitive testing in 2001. The doctor determined that she had Alzheimer’s disease, but didn’t advise them on where to go from there.

“They just gave us the diagnosis and kind of said ‘Good luck,’ ” he said. “(There was) no care or support training, no real resources ... they literally just gave us the diagnosis and sent us on our way.”

After his mother died, Mcdonald got involved with advocacy and now serves as a board member for Alzheimer’s Association San Diego. He travels to Sacramento and Washington every year to share his story with elected officials to gain support for research funding.

“They put the most value in when they hear from their constituents, people either from their districts or from their states, that come in and tell their personal stories,” Mcdonald said. “I could be a lobbyist that knows the (HOPE for Alzheimer’s) act forwards and backwards and go educate them on that, but that’s not near as impactful as going in and telling them about my mom and how she didn’t recognize me.”

lauren.mapp@sduniontribune.com