BOSTON — An estimated 120,000 Massachusetts residents suffer from Alzheimer’s disease. In the coming months and years, they may get some new help from the state in accessing the resources.
A bill pending in the Legislature, the Massachusetts Alzheimer’s Project Act, would create an office within the Department of Health and Human Services to help coordinate, and direct people to, Alzheimer’s resources. The key sponsor of the bill is Rep. John Scibak, D-South Hadley.
WBUR’s All Things Considered host Sacha Pfeiffer began by asking Scibak why he thinks the state needs an office dedicated to Alzheimer’s, and whether that means the state’s existing infrastructure for coping with the disease is insufficient.
Rep. John Scibak: We’ve got some of the best services. But if you’re a family who suddenly has an individual — a parent or a spouse who’s diagnosed — you may not be fully aware of all the opportunities. And they may differ from various parts of the state. It may be different on the Cape than in western Massachusetts, where I’m from.
In fact, you’ve said before that in the case of a disease like breast cancer, say, you believe there seems to be a fairly good system in place for where people should go if they suddenly get this diagnosis, but that you don’t think it’s quite that case for Alzheimer’s. What is the difference, do you think, between the two systems?
I think some of it is just the awareness. Unlike some of the disease entities that really have been around for awhile and have marshaled support and really have a great deal of enthusiasm, if you will, among the community at large, with Alzheimer’s it’s not the case. What you have are family members who feel overwhelmed, burdened, embarrassed, not sure where to turn. And so it may be that this is the appropriate strategy.
In terms of families that do feel overwhelmed and overburdened, what have you heard from your constituents, for example?
I’ve heard from a number of individuals. I can think of one woman in my community who said, “I’m trying to keep my husband home as long as I can. He’s incontinent. He no longer knows who I am. It’s just a struggle to keep him safe.” In other cases, people have actually left their jobs. They wind up being the caretaker for a parent, a spouse. And it has taken a psychological toll, a physical toll, an emotional toll.
And if the state of Massachusetts creates an office, a government office, to help those people, how exactly would it help them with those problems?
I think in some cases, it’s inventorying the available resources that are there, focusing a great deal in terms of education, making sure that people are in touch with providers within their particular area. How do you identify what is a good alternative living situation, be it a nursing home or an assisted living center? But I think the other good part of this bill is the last section that creates an advisory council, and looking at the experts. So let them help to define what this plan should consist of.
You personally have had a number of family members with Alzheimer’s.
Yes, I have.
What was your own family’s experience navigating the support network for this disease, a good experience or a bad one?
It could have been better. I can think of an aunt who was certainly in need of services. She was a widow. It was a sibling who was caring for her and not knowing, where do I put this person? I think we’ve heard of other situations where there are family members concerned that their loved one is being exploited financially. And the most difficult decision, I think, and I’ve heard dozens of constituents make it, is, you know: at what point do I have to acknowledge that I can’t care for this person at home or I simply don’t have the ability or the knowledge to do what’s best for them?
This bill also says that this state Alzheimer’s office, if it ever comes to be, would accelerate the development of treatments. But how would a state office play a role in that? Because really, that has to do a lot with money, money to jump-start research.
In some cases, the research could be basic research in terms of trying to identify the neurological causes or sequelae to Alzheimer’s, and it’s not unusual for some states to supplement federal research dollars or private dollars.
In this very tight budget environment and this difficult economy, where will Massachusetts find the money to create this office?
I think the question, once this state plan passes, is for the advisory committee to make recommendations and figure out exactly what is this going to cost. There will certainly be some infrastructure in terms of the establishment. But I believe that it actually would save us money in the long run if we can find individuals who are able to access services, if we can maximize the dollars, ensure that we’re maximizing available dollars – be they federal or other sources — reduce duplicity, prevent people from relying on higher-cost options such as emergency rooms, could actually save us money in the long run.