Dementia - Available Resources for Alzheimer's Patients Discussed

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Guest: Dr. David L. Bachman – Neurology

Host: Dr. Sally Smith

Sally Smith: Welcome to Age to Age. I am Sally Smith. Let’s talk. Today, we have Dr. David L. Bachman with us. Among other roles, he is a professor of Neuroscience at the Medical University of South Carolina where he serves as director of the Division of Adult Neurology. He is also Co-Director of Alzheimer's Clinical Research Program. This is just a few of the roles that he has, that positioned him beautifully to talk to us today about Alzheimer's and one of the facets of Alzheimer's, which is the amazing size of the situation as it unfolds over these next few years and what resource are going to be needed to deal with it. I have been amazed in doing some reading recently at the size of this problem. Now 4.5 million Americans currently have Alzheimer's in the United States and as of this year, it is going to cost us as a people 100 billion dollars. Now, as baby boomer has turned 65. 10, 000 people a day will turn 65 in America alone. This is an amazing growth and it is going to be an amazing economic tone. How can we handle this boom and if so, do you think it is possible?

Dr. David L. Bachman – Neurology: Well, it is going to be challenging that's for sure. By 2050, which I personally don’t plan to be around then, but by 2050, it is estimated, there will be more than 3 times the number of patients with Alzheimer’s disease that we have now; because of the continuing aging of our population. So, if you imaging 3 times more Nursing Homes, 3 times more Nurses to staff those Nursing Homes, 3 times the cost of medications; it really is a staggering problem. This is an important public health problem. It is growing public health problem and one that we really need to address now. Preferably prevention is going to be much better and much more cost effective than treatment.

Sally Smith – Author: Well, that became apparent to me as I read because when you have the condition, where you do not know exactly what cause is it and you do not have a cure for it. You only have instruments of easing peoples walk through that journey of having the disease and you have see how much it is costing and how many more people are getting it every year? You can see that you have just a growing balloon or really of bomb and it made me wonder and what may be number 1; see the incredible push for research now, before it grows any bigger and 2; it made me wonder, how much the national priority of is this.

Dr. David L. Bachman – Neurology: I do think that it is a significant national priority, but of course there is lots of competition for health care dollars these days, but Alzheimer’s disease has been relatively generously supported in the past, but with the latest federal budgets everyone is concerned about research, not just on Alzheimer’s disease, but research across the board, but I will say one thing to keep in mind that of course, the goal will be to come up with the cure for Alzheimer’s disease, but even if you did not come up with cure, if you came up with the medication that could delay the onset of the Alzheimer’s disease a year, two years or five years, say; that would have a tremendous impact on public health, even without necessarily finding a cure.

Sally Smith – Author: You know, when you think about Alzheimer’s and aging as a given in the sense that people are living longer that they more of them are getting this disease and you hold that up against the research for ceratin diseases that don’t affect 4.5 million people in America alone in year 2007 and if you looked at the numbers, you would think that that would be a huge argument for doing something significant and I am sure that's not lost on the people asking for grants. How many young researchers are interested in this field? Is this a hot field?

Dr. David L. Bachman – Neurology: This is very hot field. In part because there are line of clues that we have now to work on, to suggest possible causes of Alzheimer’s disease, and multiple points in the Alzheimer’s process that opened themselves up for the possible treatment options. So, this is a very hot area right now and you open up any neurology journal, there will be a number of studies related to Alzheimer’s disease. So, I am happy to say it is a much more active field than say it was 10 or 15 years ago.

Sally Smith – Author: It is difficult, given ? I know from time to time, we see advertisements that certain studies are going on and you will receive certain free care and followup in that sort of thing, is the fact that the patient is in somewhat impaired status and that they may be more confused. Is it harder to conduct studies on regular basis with hard scientific data when they have Alzheimer’s?

Dr. David L. Bachman – Neurology: Well, there are number of challenges in doing research on the patients with Alzheimer? disease. There issues first of all, in terms of consent and whether somebody has the capacity to consent and whether you need a guardian or someone to provide consent for them? Here is the problem even just a caregiver getting that person dressed up and getting them into clinic to get the study done, that is a tremendous imposition on caregivers in order to participate and do that. We are very appreciative to the volunteers who have come forward to help us with this. Currently, with Alzheimer’s disease, the primary marker we have of whether we will have an impact or not, is the cognitive testing; is the memory testing. There is actually a wave of new test and that may become available soon including certain imaging studies and other biological markers that may allow us to see if we are impacting the disease without necessarily slowly depending on memory testing.

Sally Smith – Author: I see. Well, as we are talking about resources needed with this dementia. Certain things came to mind, not only the financial, the caregivers, the legal, the medical research, one of them that was particularly telling is the statistic the fact that 70% of the 4.5 million people that have it in United States actually live at home. What resource is here?

Dr. David L. Bachman – Neurology: I think it is important to repeat that; because I think most peoples image of somebody with Alzheimer’s is may be someone in the Nursing Home. The vast overwhelming majority of the patients with Alzheimer’s disease live in their own home or they live in a family member or caregiver’s home and so, whatever services we have to deliver, we need to help to deliver to that patient in their home environment. It also means, we also have to provide care for that caregiver with especially when the disease is moderate to severe. The emphasis really becomes more and more own providing care for the caregiver.

Sally Smith – Author: I know there was a series of articles in the New York Times about the entrapment really. I do not thinks that is too strong word that these articles portrayed in that they were older people who were during 60-65 facing what they thought would be the retirement after a life of working, who now have elderly parents may be 90 years old who for one reason and another are completely incapacitated, they do not have the funs to do anything else. I mean, at what point, do the people have options there?

Dr. David L. Bachman – Neurology: Well, options depend on resources and resources depend on very often on the financial situation that is available. Medicare, which most older people has, really provides a very little if any care either in the home or in the Nursing Home. Medicare, if somebody had a stroke or had broken hip, Medicare will provide physical therapy, occupational therapy, speech therapy, and that sort of thing for period of time, usually not more than a few months. After the acute event Medicare will also provide Hospice Palliative Care Services if someone has reached that stage of their illness, but other than that, a Medicare does not really provide much in the way of home services. A Medicaid, which I am sure many of you know, is a federal state partnership is designed to take care of folks that are indigent, the rules for Medicaid very considerably from state to state, in terms if you qualifies for Medicaid, but if the individual does qualifies for Medicaid, Medicaid will pay for long term care and also most states have what are called Waivered Services, where they will a program of a home health aid, nurse, and a number of other folks that will come in to the home and provide services in the home, but sometimes even for these services there are a long waiting lists.

Sally Smith – Author: Well, all of this makes to me think about how helpful it is to get in touch with the social worker. Now, who can help with all these confusing things at a confusing and stressful time? How do you get these services? How do you pay form? How do you even get in contact with the right people in you community and what are the rules and sense like the doing you income tax by yourself almost and what I am wondering is how hard is it to get in touch with that social worker and is at another cost.

Dr. David L. Bachman – Neurology: Well, there are couples of people in the community that can be at help. Now, those kinds of that help is often provided by attorneys and there is subspecialty of attorneys is called Elder Law Attorneys and they are very concerned about these issues; helping people qualify for Medicaid, helping people to get various trusts in place, helping to set up advance directives, durable power of attorney and Elder Law Attorneys may be a very good source of health. There also are individuals called Case Managers and there are professional Case Managers. You can go to the web, there is National Organization of these folks and most good size communities have these folks in their community and they can often come into the home, doing assessment, try to see what’s sort of services may be needed and often offer, they can either do an assessment and then they can also offer sometimes a basket of services depending upon what is needed.

Sally Smith – Author: Well, one of the thing you mentioned the legal, there is another resource that families may need and now I believe at a gathering where or you and I both spoke, we were joined by a gentleman who talked about legal issues and was saying that if you can get steered to the proper channel they do have sort of templets of wills in your stay of durable power of attorney, end of life decision, and legal documents. They could at least help people to sort of find out what the basic issues are if in case they had limited resources and may be they are even places that would have some sort of help, but there again you would need direction of hand over.

Dr. David L. Bachman – Neurology: Well, you can go through, you do not necessarily have to have an attorney to file in advance directives or durable power of attorney or that sort of thing, but if you are going to do this one your own, you are going to need to make sure you have the right form for your state and you are gong to need to make sure that it is registered appropriately, but you could do it on your own that certainly is true, but in general if you have the resources, I will really do recommend that you see an attorney, because that attorney will also sit down with you and go over your financial issues, was if there are certain trust or other legal documents that you may need. You may need updater wills. So, if you can afford it, it is certainly good to get the help.

Sally Smith – Author: I could not agree with you more. I think that is huge point. I think what is so sad is that so many people obviously cannot afford the ideal and in this imperfect world we live in and is that true also of medications, is it hard to get the medications to ease the Alzheimer’s situation

Dr. David L. Bachman – Neurology: It can be difficult to get medications. Medicaid will pay for medications if individual qualifies for care within the VA systems. The VA will substantially reduce cost to provide medications. There is now Medicare part D and in addition for those who folks they do not qualify for any of those, the pharmaceutical companies actually have various programs set up. That people may qualify forward, if you talk to your pharmacist, your pharmacist may be a little help you figure out when you qualify for one of these programs and if you do you can also get your medications for free, but there are still peoples that fall through the cracks, it’s very unfortunate.

Sally Smith – Author: It is unfortunate. One last thing, I was so amazed because I have a mother who is completely has not known my name for 5 years and does not recognize anyone but I go to see her whenever I can and she lives out state where most of my family is and I went there in the last time and see was absolutely looked beautiful. She was all freshly quaffed. She had fingernail polish on. She had lipstick rouge. She had beautiful earrings on. She was all done up and I got to know her new friend Betsy who works for hospice and I was so surprised that over my subsequent visit I have gone to this lovely lady with the shining face who comes in and plays doll with my mother who cannot give her 1 bit of feedback. Who is completely in over a climber type chair, rolled around or in bed and this is her calling in life and she is a hospice volunteer and what I was surprised with is the misconception that hospice is only for the last 2 months of a dreaded illness. My mother is not going to survive. There are also it do not resuscitate issues, she is like to ever ready battery. She is going along beautifully and without a single piece of medications and has been for used that she is terminal innocents that I also surprised of that. This is something that is well known and I just missed it.

Dr. David L. Bachman – Neurology: I do not know how well known it is, but hospice can be a very valuable resource. It is a resource that is paid for by Medicare. It is really only folks in more advance stages of Alzheimer’s disease to really qualify for this. A physician has to sign a form, a testing that he or she believes that this individual likely has only 6 months to live, but you do not have to die right one the day at the end of the 6 months, in fact, many hospice will continue to provide care. I think it is up to 2 years with again with the expectation of this person is very ill, there are also certain expectations that go along with hospice that you are not going to be in. This person is not going to be intubated or electric shocked or have some sort of resuscitation done that the sole purpose this is really a comfort care for this individual at whatever time they may have, but hospice offers some wonderful services and if people are not assure and I also the hospice can provide the services either in the home or in the nursing home. So, he does a necessarily just have to be in home to obtain the services. If they have any questions they should certainly consult a social worker or call hospice directly and ask them for an assessment.

Sally Smith – Author: I think that is wonderful advised, David. In wrap up, looking at this and saying the amazing resources caught up in the treatment of dementia not only the financial but the caregivers, the legal, the medical resources, the time away from the jobs of the caregiver’s, the lack of income from the Alzheimer’s patient themselves, and the huge emotional stress on families. It is clear why it is such a priority to come up with the cure. What are your hopes for cure? Do you feel like around the cusps? Is it like an archaeologist, who thinks tomorrow will be the opening of opening of King Tut's tomb or do you see this is a long drawn out process.

Dr. David L. Bachman – Neurology: Well, we already have some drugs on the market that do a reasonable job of helping stabilize symptoms for years, sometimes longer. There are other drugs currently under study that also look very promising and may help to stabilize symptoms for period of time. I think that where we may be looking at in the near future is a two or three drug sort of cocktail approach such as used to treat HIV now, where you may be able to stabilize symptoms for years at a time. There is still the possibility of other sort of breakthrough therapies. Now, they are restarting the new vaccine therapy again for Alzheimer’s disease, it was stopped 3-4 years ago, because 15 patients developed severe life threatening side effects. The study is just starting in attentive way to make sure that it is safe. We do not know whether it is effective or not yet. We are still trying to make sure, it is safe. So, these are very interesting therapies, just over the horizon.

Sally Smith – Author: Well, this has been fascinating afternoon with you, just I am so appreciative that people with your level of interest and brain power are taking this on as a challenge and hopefully we will all be the great manufacturers of it as our time coming into the danger zone approaches. So, I would like very much to thank our guest Dr. David L. Bachman for being with us today and I hope we will have you again some time.

Dr. David L. Bachman – Neurology: Oh! Thank you, Sally, I have enjoyed it.

Sally Smith – Author: And I would also like to thank my producer. Betsy Reves. Thanks all of our listeners too for joining us. We welcome you and your suggestions. We have a web site where you can make suggestions and ask for certain issues to be dealt with or just tell us what you would like to hear or us to comment about, so we invite that very much. This is Sally Smith, Age to Age, saying good bye, and wishing you courage and joy on your journey. We are all connected.

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