their proper titles, of course, in your program, but i just wanted to say it was really an honor and pleasure to work with everybody on the expert panel. besides the expert panel, the way in which this was constructed was that we have subcommittees that really talked about these issues more in debt, and we had an additional 18 people that came to the table to discuss these issues with members of the expert panel and then came back, and we would all think about it and try to make

sense of the recommendations that were made and how we might place them into a plant, so i just wanted to mention those 18 people again with my apologies for mispronouncing your name. these are all on the evidence based practices in emerging research subcommittee. finally, education and prevention. i mention all of these people because as i was driving here today, i was thinking if we were to add up all these years of experience, how many would that

be. i have to tell you that i think it was in the thousands. we had just an enormous, wonderful pool of both. there is many people to sign, not the least of which is the long term care council and katharine from the mayor's office and the mayor himself, who hopefully will join us a little bit later today, but we also have a group of folks who helped guide us through this process. i wanted to do a special shot out to all of them because it was a very long effort and well worth it. the planning for this was, as you can see, quite intensive.

i'm going to talk a little bit about the second question that i was asked on this interview, and that is -- "why aren't we doing this now, -- what are we doing this now given the economic conditions?" when we started, we knew the economic conditions were bad. we just did not know how bad they would get. the truth is we just did not know. we are all in uncharted territory at this point. so let's talk about the budget. i'm going to ask for the slides to go up now on the state budget. i am going to talk about the california state budget, not what is happening in san francisco. the state budget is primarily where i have been looking in doing advocacy around some of the programs. i just want you to know that when we talk about the network of care that is in san

francisco and really across all counties of california, it is a pretty fragile system. it has been it together over the past 20 years with advocates fighting for services and recognition for all of you who are in the audience caring for somebody with alzheimer's or some other chronic care condition, but the services we have in place that we fought so hard for -- these all make a network of safety net services for all californians, for all people in san francisco. it does not matter. many of these are not income- tested programs.

they are for everybody. under the governor's recommendations, in the budget -- we have a budget, but the recommendations in terms of cuts -- his recommendation was to eliminate almost all of these. leave a little bit of in-home support services, but eliminate all of these programs. so if these programs would go, they would vanish overnight, california would really have no community network infrastructure. it would be gone. once it was gone, and even if the funding would be restored, it would take years to put it back together again. speaking as someone who has had the experience and honored to put together a statewide system, it takes years. it does not happen overnight. what i wanted to ask this morning was how many of you in the audience are caring for somebody with alzheimer's or dementia or some kind of chronic

care condition? keep your hands up. how many of you are over the age of 40? ok. you are affected or you will be affected in the future, and this is where the political becomes very, very personal. this is where we need to ask ourselves what type of community do we want to live in? we need to also say if i should be so lucky to be long lived, what should happen if i -- what will happen if i should need some assistance? we are not going to have the community services tomorrow and five years from now. that is how significant this budget is. so what is to be done? what you have in your packet is a very wonderful summary from the alzheimer's association about all of these services and where we are in the process.

we fought and fought, and we got all of these services back into the budget, albeit with some cuts. we wanted to make sure they were restored. we understand the economics. we are all there, but we wanted to make sure that they were restored. why is this important? it is important because we have a base to work with, but once you repeal the funding, you may actually repeal the enabling legislation, so we needed to have these restored. so the budget subcommittees did restore these. right now, what is happening is there's a process called the big five. nothing mysterious about it, and they may actually go out to that smoking tent that the governor has -- i do not actually know -- but they are simply parties from both houses and the governor. there is of your legislators and

the governor that our meeting. what you need to do is you need to call the governor. all of those fans that were up -- you need to call the governor and say, "we need to have these programs, and we need to have some revenue enhancement in order to get us through this particular crisis." it is imperative that we keep this network in place. a lot of the goals we talk about this morning are going to be much more difficult to achieve if not impossible in the short term. so that is my commercial for the state budget. it is very near and dear to my heart because of course, we are on the cutting block to be totally eliminated. first program in the country to recognize care givers legislatively, and we are going to be cut at a time when we know the demographics are ticking away. we are going to be in serious trouble. so what i would like to do is just talk briefly about the game

plan for today, and that is that in the morning, we really are going to need this presentation of the plan we worked so hard to present. it is not final. we really want your input. that is why we had this day in mind, to present it to the public and ask for your comments as well. so we are going to be doing that in a variety of ways, with a little bit of information and background and then talk about the subcommittee's reports briefly. and then, we are going to have an opportunity -- jay and i are going to ask for your feedback -- and then we are going to culminate, hopefully, with the mayor coming in and providing us support and a welcome to all of you as well. we are going to break for lunch, and in the afternoon, what we

wanted to do was have the opportunity to offer the kinds of information and access to services that many of you are looking for right now. the afternoon is really workshops that dvd kind of information, and we have resources set around that that you can talk to the folks that provide the services surplus san francisco -- the services to san francisco directly. there is also a concurrent effort going on on the state level to look at planning on the state for services for alzheimer's, and ruth gay from the also association will be asking you to provide your feedback and input in that process, and i hope that you will stay around for that as well. as we move to the next agenda

item, i would like to introduce our next presenter. paul gibson with gibson and associates. he has directed a lot of different research projects in the past. he has been working in collaboration on this particular project with the resource development associates and also with the mental health association as well, so with that, i would like to turn it over to paul for his presentation. thank you for your attention. [applause] >> good morning. i have to navigate a lot of things, 10 pages, talk into this, advance the clicker. i hope i do not get confused. at any case, today, my task is to talk to you about the role of informal care givers and help me

to address the crisis in dimension. i want to start by just defining sort of what informal caregiving is. informal caregiving is uncompensated care generally provided by family members, extended family members, for other members of the -- i'm sorry, informal care givers, extended family members in the broadest definition of "family members." it could be a spouse, a daughter, a son, a relative, a partner. but 75 percent of those that provide this care are women. so we talk to a lot of care givers in the process of doing your research that supported the expert panel, and in doing so, we heard from them about their concerns. one of their concerns was that

their responsibilities in relation to caregiving changed so dramatically as the process unfolded and as dementia advanced. they also reported that the first stages of care were by far the most challenging and that one of the biggest problems involved in those early stages was just the complete absence of good information, access to services and support and referrals and so on. the absence of this kind of support is a very big missed opportunity. during the early stages of dementia care, the role of a caregiver is primarily to provide in-home support and obtain information about dementia and how it progresses, obtain information about resources, insurance coverage, legal issues, begin to navigate the system of services and how to access them, begin long-term

planning, providing emotional support, and support daily living needs of the individual who has the dimensions. of particular importance in the early stages of dementia is planning how they are going to care for the individual. in release into state issues, insurance coverage issues, -- in relation to state issues, insurance coverage issues, advanced directives, all of these things would ideally be developed and planned while the individual still can participate in the planning. if early diagnosis does not occur and if early information is not given to the care giver and individual with a major early on, this is another missed opportunity. as you progress to mid-stage dimension, the level of in-home support increases as the individual with dementia begins to have more and more of an erosion of their province of abilities. as a result of this, very often,

the informal care giver will seek the support of paid formal care or seek respite in adults take care options, our range and manage other care, including primary and specialty care that is very common for individuals with dementia. managing increasingly difficult behavioral issues and symptoms. and plan for the future and possible assisted living and so forth. as we move into the late stages of dementia, often, family members continue to provide support and maintain their loved ones in their home in the community. this requires virtually round- the-clock support at this point, and so other formal support is absolutely essential. in the absence of this, if it becomes no longer possible to maintain the individual in the community and in their home, the care giver's roll changes a

little bit. they are negotiating with health care staff of the services, achievements, and interventions, and they are insuring advance directives in managing end of life care. while the actual need for time may drop a little bit, the level of stress actually ramps up because they have to start making some very difficult decisions, and these decisions and transitions from care, from home to assisted living, to a nursing home, to hospital, to dealing with hospice and the healthcare providers, all force difficult decisions for the informal care giver. so what would it cost if we paid for informal care?

the expert panel explored a variety of issues related to the cost of dementia, and one of the things they look into is what would it cost if we were actually paying for these services? during the early stages when a person has mild to moderate impairment, that estimate is $63,000 per year per person. as the present advances to a more severe impairment, that increases to $71,500. if you look at the estimated 20,000 individuals in 2008 in san francisco, who have dementia, the total cost would be approximately $1.2 billion. remember that 75 percent of that care is provided by women. this estimation does not include

lost wages because very often, informal care givers have to give up their jobs or reduce their hours. they have to pay for in-home support or other supports. they have to pay for their transportation for the transportation of their loved ones and a variety of other costs. how those providing care impact the care giver? aside from lost wages, there are significant costs and burdens that the informal care giver must bear. care givers are at an extreme risk of developing cardiovascular disease, depression, stress, and anxiety. it is estimated that for every year of caregiving, a care giver will lose one year of their role life expectancy. -- one year of their own life expectancy. as a result, care givers often do not out with the person with

a midget. as part of our work, we interviewed over two dozen care givers and agencies. we wanted to capture a little bit of their own words what their experience was as a care giver. these interviews were conducted primarily by resource development associates. during the interviews, care givers would say things like, "there was so much information that it is confusing. when agencies work together, there is a real benefit to us." what you're going to here is basically what the research shows, and i'll be summarizing that of that in a minute. we have so many decisions. the themes here it really is a single point of contact and a reliable source of information. in the absence of a reliable source of information, people

often go on the web and fall prey to unscrupulous marketing techniques and so forth. other comments included helping have moments for themselves and they used to having someone else to care for their husband. indeed, while best it can provide that rate, it -- while respite can provide that break, it also provides a transition where the caregiver gets accustomed to have someone else being involved in that. another comment was, "i broke my back for my dad, and when i had to put him in nursing care, i felt like i had failed him." this is common. despite all they had done, at the end of the day, they felt like they have not done enough. one of the things i want to talk about now is the importance of support for care givers. the research indicates that you can reduce care giver stress and

improve outcomes for the individual with the mention it if you promptly delivered comprehensive care giver assessments, education and information, and coordinated easy access to community services and caregiver support. caregiver assessment is most often overlooked entirely, and indeed, provision of an assessment provides information about the care giver's capacity to provide the kinds of support that are coming, that are going to be needed, and in the absence of that, the care giver's phone system a breakdown. in a perfect world, early assessment results would lead to a customer support plan delivered by a coordinated team, but we are a long way from that -- lead to a customized support plan. increased social support has been linked to greater well-

being in spouses and family care givers, but i'm going to try to rush here. a great deal of research was done in support of this planning process, and that research is sort of summarize here. you have it in your handouts, but i'm going to try to stick too quickly. seamless service and facilitated access is essential for both people with dementia and their care givers, especially during the transitions between levels of care, counseling support group participation and access to full support may preserve caregiver health and delay institutional a station. often, that is not provided. in fact, most often, it is not. i mention the services that are available. it is not the absence of these services and information. it is the absence of referrals for them. at the bright, you'll be able to visit some of the tables. there's a table that outlines a lot of the resources available

in the community. so what happens if there is no caregiver? in the absence of and involved care giver, individuals with dimension must access paid in- home support were injured assisted living, nursing home, or hospital prematurely. since there is no public funding, this inevitably means place and in nursing homes or hospitals for moderate to low- income individuals. in the absence of such a placement, these individuals are subject to homelessness or life in a homeless shelter. san francisco has an increasing number of individuals with no love once in the vicinity. indeed, 40 percent of older adults in san francisco have no relatives within a 20 minute drive. this absence creates an absence of support for these individuals.

models for volunteer-based support exists, but none were developed for people with dementia and their care givers. they were developed for other populations like individuals with aids, development of disabilities, and so forth. those models would require significant modifications to even be able to remove we address the needs of individuals with the midget. but it is critically important -- to even be able to remotely address the needs of individuals with dementia. assisted living expenses are twice the form of care costs incurred when an individual lives in the community and five times the cost when a person is in a hospital or nursing home. these financial projections assume that there are sufficient beds in hospitals and nursing homes, and that is by no means a given as the numbers of chronic care beds are diminishing, and

no new ones are being created. the finance subcommittee for the expert panel estimated that if each person would delay being institutionalized by one month, this would reduce costs by up to $6 million. a wealth of other research points to the same kind of thing. in the next two slots, they summarize some of those findings. i will skip past that, and you can look at that at your leisure. it is a finnish study and then a comprehensive study, and there are lots more. one thing that does need to be emphasized is that while there are reasons for trying to keep an individual in a community, there are also good reasons for placing them in a nursing home or hospital. and there are conditions that absolutely required, and in those instances, there is no point to feel guilty or like a failure. at that point, that is the most appropriate placement. san francisco faces a

significant challenge. it must develop the capacity to deliver timely, comprehensive caregiver support and develop easy access to support and develop approaches that provide in-home support to individuals without informal care givers. we face an increasing in expanding crisis in dimension care. fortunately, we know what needs to be done. caregivers have told us what they need, and the research has provided models. now, the strategy for excellence that is being developed by the expert panel provides a way to get it done, but i do not want to leave the message that is a road map is a panacea. even if every single recommendation of that panel is implemented expeditiously, we still face a crisis of staggering proportions, but if it is not addressed -- and in this fiscal crisis, that is going to be a real challenge -- if it is not addressed, we face a really serious problem in the

future. thank you. [applause] i tried to do 16 minutes in 8. my next task is to introduce adam boxer, a neurologist at the ucsf who specializes in alzheimer's disease, huntington's disease. he obtained his medical and doctorate degrees as part of an nih-funded medical science training program. he completed residency and neurology at stanford university. in 2002, dr. fox serve received an award from the san francisco

neurological society for basic research analyst of the disease, and the 2005 john douglas foundation award, and he was a key member of the expert panel. >> thank you for that very kind introduction. i think that when time is limited, i want to really provide a different perspective about alzheimer's disease to you. i spend most of my time taking care of people with alzheimer's disease and other forms of dementia, and the other part of my time is really spent trying to find new treatments and new ways to diagnose alzheimer's disease and dimension. i think many of us in the clinical research community feel that while these are terrible times financially in this country and these are tough times for care givers, there's a lot of hope that we can really look to in the research, i

think, and i believe, and maybe i am a bit optimistic, but i think there's a good chance that in 10 years, when we are well into implementing this new plan for the city, we are going to have new ways to diagnose alzheimer's disease. we are going to do it earlier, more accurately, and we will also have much better treatments. with this, we hope we will have some impact on everyone's life with these diseases. i hope that this will be a little bit of an optimistic part of the top. just a few definitions. i think it is important to say that we as researchers believe that dementia, alzheimer's disease, and other related diseases are not part of normal aging. that there are many people who age well into their 90's who have normal memory and cognition, so we have to think of these things as diseases and not just a foregone conclusion of aging. so what is