Family caregivers take care of 80% of the Alzheimer’s patients in California — and the state needs to support them if it wants to save money and at the same time handle the burgeoning, aging population here.
That’s the take-home message from a new report out today, according to Debra Cherry, executive vice president of the California Southland chapter of the Alzheimerâs Association.
“The primary message of this plan is that you need to invest in what supports the family, and in that way you save the state money,” Cherry said, adding that cash is saved by keeping Alzheimer’s patients out of nursing homes, emergency rooms and hospital beds. “Family caregivers and community-based care, that’s the key.”
An estimated 580,000 Californians have Alzheimer’s and that figure is expected to double by 2030.
“The numbers are staggering and overwhelming,” state Senator Â Mark Leno (D-San Francisco) said. “And the financial cost will be extraordinary in the coming years. But this plan is a good step forward.”
Leno said his mother is one of those numbers; she has had Alzheimer’s for 10 years, he said.
“My mother for a lifetime has always loved crossword puzzles, and even in some of the earlier stages she was still doing them — in pen,” Leno said. “And I wondered, is she really doing them, or is she writing down gibberish? I sat next to her, and learned that she could get words a lot faster than me, and she knew words I didn’t know. Sitting there, for a moment, it was as if nothing had changed,” Leno said, “and she was still really there.”
The kind of love and support his mother gets at home has made a huge difference to her, he said. “That’s why it’s so important to keep people at home getting care, instead of institutions,” he said.
Ironically, the state is busy this week cutting the budgets of In-Home Supportive Services and Adult Day Health Care, which promote the kind of home-based services Cherry is talking about.
“We saw this economic situation coming,” she said. “But even with the budget so dire, we thought we should be proactive and plan for a response. Things will get better, I do believe that. And we saw an opportunity for a blueprint where you could have a good system of care. This plan provides the guidance.”
The state plan outlines six goals, with recommendations for attaining and funding them:
- Eliminate the stigma of Alzheimer’s, with public education outreach, and the full development of CalCareNet, a state Web site that links to long-term care resources by county, though not all counties are included;
- Enable access to coordinated care in the home, including a focus on the medical home, transportation and affordable care;
- Support family caregivers, making sure they have access to a care manager;
- Develop better dementia knowledge among the Alzheimer’s workforce, Â working with licensing boards to make sure they have adequate training in recognizing and treating dementia;
- Push research, including supporting stem cell research in Alzheimer’s disease; and
- Create the infrastructure to change the delivery of care across the state.
The plan will be overseen by the state Health and Human Services department, which will have a committee track the state’s progress, Cherry said.
“What’s new here, as I see it, is having a comprehensive approach, and better coordination of services,” Cherry said. “For instance, adult day services sometimes have to file paperwork with four different state agencies, and we’re hoping to streamline input from those state government agencies, so it’s easier to provide services.”
In real terms, she said, that means focusing on family care of Alzheimer’s patients whenever possible. “Right now, primarily the delivery of care is the family. And those families only resort to nursing home care when they’re exhausted and burned out,” she said.
“They should get a little help, and it doesn’t cost much. It’s an investment of pennies now, and we can save dollars down the road.”