New York Voices Health Special: Alzheimer's Disease

I'm. Dealing with my father's Polly's been hard. Some things I don't have answers to. Sometimes I don't know why he does the things he does and I know most of these is a learning process as you go along. For my mother wished tough because she was in denial that my father was mentally deteriorating. I think she kept thinking herself that if she treated him like he had an illness then it's just going to get worse. How is it that the Alzheimer's patient has very little communication with the outside world. You put on one of those old time songs. That are either in tears or they're actually singing along. Major funding for New York Voices health is provided by the kakapo Family Foundation. Additional funding is provided by the Oberoi and Terry Krumholtz foundation. Michael t Martin Elise JAFFE And Jeffrey Brown and members of 13. Welcome to this edition of New York Voices health. And 906 a German doctor named

Alzheimer noticed changes in the brain tissue of a woman who had died of an unusual mental illness. Today over four million Americans have been diagnosed with the disease named after Dr. Alzheimer. And as our population ages that number is expected to rise dramatically. Alzheimer's disease is a neurological condition that causes nerve cells in the brain to die leading to a decline in cognitive abilities. Dementia and eventually death in the next hour we'll see how families cope with this devastating disease. We'll talk with an elder law attorney about legal and financial issues. We'll also discuss the latest research and the therapeutic value of music therapy and patients with dementia. But first here's a look at how Alzheimer's disease affects the brain. The human brain employs a complex mix of chemical and electrical processes. And remember. To do this the brain operates a vast communications network made up of billions of nerve cells called neurons. Within this network

chemical messages or past infractions of a second one neuron to another. Electrical charge travels to the end of the neuron resulting in the release of messages along countless pathways. Timer's disease. This intricate signaling system. Mostly to blame. Or to have normal structures in the brain. Amyloid plaques and tangles. Are Made of beta amyloid a toxic molecule that come from a normal protein. Something causes enzymes to sniff this protein. The beta amyloid fragments can come together into damaging plaques. Tangles form following changes in the protein tau. Normally stabilizes the internal support structure of neurons. But an Alzheimer's disease changes cause threads to become entangled. Killing the neuron by damaging critical parts of its transport system. As Alzheimer's disease progresses more and more neurons die. The brain

shrinks memory is lost. 58 year old who was diagnosed with early onset Alzheimer's in 2001. The hallmarks of early onset are that the disease is often inherited and that it strikes at an earlier age usually before the age of 65. After he lost his job the burden of his disease fell on his wife and his step daughter Liz. My father worked at JFK Airport. He started as a dishwasher many years ago like 35 years ago and that was his home. He would leave it till the morning comes back home it's only afternoon. Asked for his job. He never missed a day or even got one for that. Not too long ago I reminded him why he took me. He never missed a day. He got many. And when the Twin Towers collapsed and later after that he lost his job I got sick and he would tell me that he please don't leave me or I'll go insane. If there was a moment

I don't have a job I would tell him that there was not much I could do. But I have to work to support us. He used to pick up my niece at the school. He's a big deal when the babysitters he's to bring them home. And no problem you can trust him. Everything was fine. But as time went on we noticed that just things weren't the same anymore. He would forget where the baby sitter's house was. Even though its apartment is actually on the ninth my he didn't know how to get back home. So now you have a 3 year old child telling her grandfather grandpa is this way. Right. They don't they didn't already know my wife's expenses you know that their grandpa was very he doesn't know the names of you know that you know secure grandpa you got to watch grandpa make sure he takes his medicine ball the daughter always to see him in the morning all take your medicine grandpa take your medicine. So they would you know there's a

little one of those pieces of Florida all the way. She's 9 she puts the part of I don't I tell her well you know you have to produce socks for so many shoes. You know. It is like a child taking care of another child with my you know. My father is actually very old he's 58. His mom also had a really young and so the his sister. When we had to find a doctor that I don't live my father with his medical condition. My mom doesn't speak English films speak Spanish. Really I don't know what to turn so I don't know what to ask for help. We do have siblings. He does have siblings also. But basically nobody had time and even though I might I have a long time but I have to do it for my mom because if I don't help all the old and all timidly. So we lost him after we got back from a trip to Puerto Rico and he was lost for 24 hours it was a disaster. And that's when we had to find somehow and put him in a safe place while I worked.

I believe the most help that I've gotten was when the social worker actually gave me the name that she got from internet and it was actually from Cobble Hill. And she told me wanted to call me they could help you. They take all the time the patients stay at the Big care program. They just accepted my father immediately when he was here during the day from 9 to 3. He has a lot of activities here that he could still see your home. Barbara Williams of the rector from this Cobble Hill daycare program. Very nice woman. Yeah I think he gets more of an activity more of a workout when he's here I think it's more of a one on one you know they have more time for him and he was also taught her at home so I think to even interact with him to play with things and he gets frustrated easily I know he loves Barbara and he knows who she is and he loves her. Has been a real big impact on her and she hopes she loves them. You know she tries to help him out when he's here to do things with him to keep him going with the Miller but I see them reverence.

Again dealing with my father's problem has been hard. Why because some things I don't have answers to. Sometimes I don't know why he does the things he does and I know most of the disease. So it was a learning process as you go along and it's hard you know and some things you know do you get frustrated you know he's had a lot of home. Little one. And you get nervous. I don't feel safe into having him and told him you have to be behind him every time he has a baby because he forgets that he's a baby and he'll carry him in the whole gist of the soul from pat him. And then walk away. You know when you can't because he's only eight months to console you got to follow my father he's a little child follow him because he has my child in his arms. I do get upset I cry I go home mad. I'm an exact come back like nothing because it's him and it's not his fault. He doesn't even remember what he did. Almost. All of them are behind. Him. All of the money. That I.

Got that. And also you know doesn't really know what's going on. He calls me mom. Other times he cries in the night out of town holds back. Yes it's hard you know. The one person he doesn't forget is Zachary because I'm a nanny and he doesn't forget him. It's kind of hard to know what state he's going to be in that thing. So when you go to the house and you have you know a playful mood you're not sure if he's in a playful mood. And use him as I'm going to time. He acts he silly. He likes to joke around. He takes the hats for the kids puts it on his head he takes a cold they doesn't want to give him back as he says it's his. So it's a little frustrating. You know he's just like a little kid you know. I don't was granted a three month leave of absence without pay to get home care in place for Julio. She needs someone to stay with him in the morning get him on the van to the center and receive him back home in the afternoon. Financially things are tight. Julio's income exceeds Medicaid eligibility so they have to spend

down half of his income. About $500 a month. I don't have the time come when he won't know that I'm his wife. He won't recognize his grandchildren. I mean he won't recognize his family. But I asked God to keep me strong. Continue to help him like my daughter says. I took a vow. I'm going to. Until death do us part of. Who we are does not qualify for home care services through Medicaid. And as of this stating the family is still waiting to get home care in place. Now clearly planning care for a person with Alzheimer's can be daunting since there are so many bases to cover from finding and financing medical care securing government benefits to planning for long term needs. Help us understand how families can get the care they need. Is Robin Finley as a director of the Alzheimer's and long term care unit of the New York City department for the aging Robin Connex clients with a wide variety of resources. Robin welcome. Hello. Thank you. Now

we just saw the difficulties that that Julio and his family were going through. When someone is diagnosed with Alzheimer's as who you are was what care needs. Are they going to immediately be hit with. Well the first thing we want to make sure that they've got a doctor who understands them which is to say a geriatrician geriatrician can be a value companion throughout the entire caregiving journey because a care needs change for somebody with Alzheimer's disease. His wife as we saw is taking time off from her work to be able to help him get to the Adult Day. That's very important because socialization is critical for someone with dementia as the world begins to close in. It's very important to go out and maintain that interaction the stimulation that will keep the brain functioning for his wife. Depending on her job she may be able to go to her human resources

department and check to see if she's eligible for the Family Medical Leave Act that would guarantee 12 weeks of its unpaid leave for her to be at home so that she would be able to be there with him while she's waiting for the home care services to come into place. Now is there one place. Where someone like Julio and his family can go to get the information that you just communicated in to coordinate. Certainly the Department for the Aging is what's known as an Area Agency on Aging and those are located throughout the country. So someone would be able to go to their Area Agency on Aging who has the resources and knows the different providers in the community through New York City to par for the aging there's a program it's called the National Family Caregiver support program which would be perfect for this family and they will be able to go to the home. SEE do the assessment provide the kind of service and linkages that the family would need not do Spanish speaking

families like Julio's have special needs. Well sure. New York City is such a service rich town people go to Florida they think they're going to retire and they come back when they have care needs because there's everything that you need right here. And the other side of New York that's so unique and Julio's family certainly represents it is the cultural diversity that's here as an example I think I think throughout New York City people are becoming more aware of that and through the caregiver programs there are programs that have services that will speak the language is the care provider the care receiver I should say so that there are individuals the home care workers who will speak Spanish. There are case managers who speak their languages through the caregiver program again there are Chinese Korean Russian in Queens. There are 14 languages that are spoken. So the service is it's recognizing the cultural diversity of New York City and people who speak all the

languages need the same kind of help. As we mentioned there are a lot of areas to cover word of the gaps usually fall. Well we could here with the financial being able to afford or not afford the services. If you have the money there are no gaps essentially because you pay for the services that you need. But but realistically the need for respite which is what the caregivers write which is what the daycare program provides there's not enough of it. That certainly is one gap I think in fact that's probably the one that you hear most consistently spoken about caregivers need that break. And without that break all kinds of disagreeable kind of conditions can arise and just exacerbated difficult situation to start with. So that's the most acute to that's what we should be looking out for right of that situation. Respite care is something that is really vital for people. So once again what's the best way to make sure that you know these gaps don't happen.

Well advocacy You know I believe that it's just so important for the caregivers the people who are using the services to advocate to their council members to their local agencies. People can write to the commissioner of Commissioner response. You know and it's about being able to advocate all the way up to get the services in place. This national family caregiver support program came because of all the caregivers in the country saying to the congressmen and women we need some services and this this program was put into place first change in 25 years in the Older Americans Act it was serious. And very good. Robin thank you so much. My pleasure. To help us more fully understand the early stages of Alzheimer's disease I spoke with 72 year old Tom Hendricks who was diagnosed with Alzheimer's in his mid 60s. A former teacher in the South Bronx Tom participates in an early stage Alzheimer's group. And as you'll see he has a

remarkably positive attitude. Well not having serious physical problems he saw everything completely double. And I with my sense of balance in my face about five or six times a week we never got off balance at all. So I went in the road use they do to bring skin cat skin to use MRI. There were about a lesions in the white matter in my brain and since my brother and my mother's sister had died of Alzheimer's the connection was easy to make. Since your family history you did that make it easier I mean was it less surprising for you. No I never considered the possibility makes a little harder I guess because I have images of my brother who had a doctorate in history but a little later on he got hit likely from his home he could finally home and and that's where I'll be.

How do you see yourself as different. Well there's a lot of. Well one of the things is words where I will have words just don't come out totally missing appointment. We are something I used to remember everything. I remember one point I was reviewing school business textbooks for a publisher and I could remember on page like a hundred fifty that it was a contradiction of page 30 and I could do stuff like that and I really can't do math at all in my head which I used to do very well. Words aren't there. I forget things I forget people. There's gaps. Now you belong to to a support group. Early onset support group.

How important has it been. Very very very hard on him. Well. There's a lot of things which we get to talk like one of the issues was driving. You give up your drugs and stuff like that. But beyond that he's sharing where it's not you know. Oh you poor dear. It's so well we had it not a fact when that happened to me what I did was. And you wake up every morning and get to test yourself to see what I got to make today. You know as good as it can you know you're going to die eventually anyway. So you know keep life as it is now as good as it can be. And I'm. If you have problems with someone you know they will. Well Tom thanks a lot. Thank you. As the care needs of an Alzheimer's patient progress the financial toll can be enormous for a

patient in the family. However there are a series of legal and financial steps that can help the family get the best care they can while using their assets in the most efficient way possible. Joining me now to talk about all this is Judith Grimaldi an elder law attorney. Judy thank you so much for joining us today. Thank you for having me. Now first of all what is an elder law attorney now do our attorney is someone who is an attorney of course is someone who has decided to focus their attention on the needs of older adults and the last stages of life so it's a blending of tax law and health law estate and trust law and all the aspects of family planning in the later years. Now what should people dealing with Alzheimer's seek the services of an elder law attorney. I think because it's such a troubling time where there are health issues and financial issues and legal issues and an elder law attorney has kind of honed in their skills to bring both compassion and organizational skills it's not just about money it's about how family deals with those choices so it's helping them make

choices. And Judy once a person is diagnosed what are the financial or legal steps that he or she should take. I think the first step is planning and to make sure you have the legal safety net of a power of attorney health care proxy and a living will. I call the power of attorney. You're creating a legal clone for yourself. The health care proxy is allowing someone to make healthcare decisions as you would and a living will to have end of life choices. Why those tools need to be in places so that you're sure as a person who probably will experience cognitive deficit as an Alzheimer's patient might you be sure that your choices are going to be played out. Your wishes are going to be enacted and that your family is is not placed with the burden of trying to figure out what to do next. Avoiding court allowing tax issues to be considered and really having a comprehensive approach to what your care needs are going to be. So what's it likely to cost a family.

Well are you talking about legal grown or the care you thought the care needs. All my goodness. We as a society pay for acute care through traditional insurance but custodial long term care like a 10 year process that President Reagan went through could cost hundreds and hundreds of thousand dollars on average a good care plan may cost 3 to $4000 a month and that's care at home. Nursing home costs run between 8 and 12 thousand dollars a month. That would put a dent in anyone's heart as someone with modest means get the care that they need without. I mean how do they get it. First of all how do we do it. Well normally their income doesn't stretch far enough. So at first most families dip into the family Fiske they use their savings and then they realize all this is getting dangerous I have a spouse I have to care about I have disabled child I have financial responsibilities. So then they lean on their insurance that runs at about two months. And unfortunately the core of most care continua care is absorbed by

government benefits. Kind of a patchwork quilt you have to put together what the federal government will pay the state the city and you have to be very imaginative very creative. The center of it all is Medicaid. And as we're watching Medicaid be attacked I wonder what's going to happen to people in the long term because there's no substitute. It's the only show in town right now that's going to cover long term care. Well from what you tell us it seems like it probably wouldn't be a bad idea either to consult an elder lawyer as soon as possible and to plan early early if you can get ahead of it in the early diagnosis then maybe you can put a package together that really allow you to live in the greatest style that President Reagan did as 10 years as an Alzheimer's patient. Well Judy thank you so much. You know caring for someone with dementia poses many challenges and can be a full time job. I recently met with three caregivers. We talked about the diagnosis about caregiving and also about the importance of taking care of yourself. David's wife Muriel was very

outgoing the life of the party. Muriel is an actress. She was a very good actress in Binghamton. Mariel passed away in October 12 years after being diagnosed with the disease. But he started noticing that her mother Eleanor was becoming very anxious. She just was always on top of everything and then just one day she just tell me I can't do this anymore. And she started crying. A one strong organized woman she is now considered in the late stages of Alzheimer's disease on able to speak or walk. When Paul's father died in 1993. His mother began complaining that she couldn't remember anything as it became more apparent that there was something wrong. She became much more cagey about protecting herself and not letting me see how bad things were getting. She was diagnosed with Alzheimer's five years ago. I began our conversation by asking how Alzheimer's disease had changed their lives well-lived. My father was 55 when I was born and my mother was 40 and

so there's never really been a time when I haven't been surrounded by older parents parents that were older than my contemporaries. The way it played out was indeed unexpected because when it became obvious that she needed help I went to her and said Would you like us to have somebody come in and be with you for part of every day would you like to get an apartment would you like to come and live in New York in your own apartment. And she didn't want to make any changes. So finally the only thing that seemed to be left was to say Well I think I'm going to have to come and live here on this house. And she was one of those people. You know I would say I don't want to be a burden of course you mustn't change your life but suddenly there really wasn't anything left. But in your situation as I said it was different you were surprised. Yeah because I expect my mother to very high strung just to have a plane OT attack you know. But yes this was very very surprising for me. You know how did it change your life. Do you know I just don't know it seems like I've been doing this so long it is just a

part of what I'm supposed to be doing. I'm going to change your life. We were a. Very devoted couple and I just went with it never occurred to me that I would do anything else. I just had to take care of her. And I had to make it is easy for her as possible. It's very very difficult in the early stages I think it to deal with it because. I had great support here in the old timers Association for going with the group and you feel very very alone that there's nobody else in the world that's going through this horror story and you don't want to tell anybody in the outside world when you have four five fifteen people around and they'll talk about their problems and you'll answer and you'll try to tell them what you did in that situation. And very often they'll defend themselves and

they won't they won't listen to you or they'll say they'll give you excuses. And I realized that they can't deal with the situation yet. Then you realize that you are doing this yourself because it's very very difficult you have to deal with all of your finances in depth. You have to figure out how you're going to support all of this. And to me. All the things I never wanted to deal with and shoved aside or I had to deal with them I had to face them. I had to deal with them. And if there's any benefit for being involved with old timers like this is the benefit that you really stronger and you're a better person afterwards than than you were before. What's the most surprising thing that you found about taking care of someone with Alzheimer's perhaps something that's counterintuitive. I mean do you always tell them what's going on in those moments of lucidity when you think that they understand. Do you always trying to convey. You know when they're when they're mistaken. Do you try to correct.

I did for a long time at the beginning of the disease when I felt that she could still at some level she could still understand reality and be that I needed her to be in a place where she could still understand our reality and I got to a point where I realized you know it wasn't helping her and it wasn't helping me. So now and she says where are the children. I'll say your mother is taking care of them. And I've seen that they've been put to bed. It's all she needs to hear she wants to be reassured and that's the truth for her and that's the only true this way. Is that right. I mean if your mother brings up your father. As if he were alive do you think it would suit her. If you tell him No he's dead he's been dead for so many years. Unfortunately when my dad died my mother was very advanced and my mother was very easy into old timers. I guess that's kind of weird to say. She never liked mess with the stove. She would hide things you know put things in socks but she would just sort of ease

quietly. At one point she was very aggressive very agitated. And that really took me by surprise. A mother hit me. I mean I was trying to undress her to give her a bath. And she hit me I have never in my entire life. And it that hard. And it just really shocked me. Yes it really shocked me I grabbed her as a mommy would you do it and she just started crying. She says Oh my God. I wonder if all of you had the experience of going through a phase of trying to be the super caregiver that you would be the best care giver ever you will going to make a mistake with your loved one that you go through this. Well I definitely went through the larger stage. I went and saw it twice a day and I was determined that come hell or high water we were going to take her home and that I would somehow make this happen. There was one day it was when she was still recovering from the broken hip and I went into the nursing home and she came

down the hall and from 25 feet away I could see that there was just I mean she was just in a state and I thought this is how she might be at home and I couldn't deal with this I just couldn't deal with it and it was a very very easy decision after that to realize that there were limitations and after that I began to realize I better pace myself and that we were in for this in this for the long haul. And I'd better think about very practically about how much I could expect of myself to do and. I continued visiting her twice a day until this spring when she began declining quite a bit more and I realized that not only was this hard for me but she was less aware of the passage of time and so whether I came twice a day or whether I had been once a day it was pretty much all the same to her.

At what point do you come to realize that you have to give yourself as a caregiver as much care as you give the loved one you're caring for. You start getting sick yourself and you realize that you can't. You really have to take care of yourself and that you you need time to yourself. You need it in a way it was helpful for me because Muriel was in an adult home so I had three or four days in the office. I realized that I was over extending my ability to cope with it and that I had to. I just had to. Our next guess is Jed Levine executive vice president of the New York City chapter of the Alzheimer's Association. The association offers an umbrella of services to Alzheimer's patients and their family members including support and guidance for caregivers. The Alzheimer's Association is also one of the underwriters of this program. Chip thank you so much for joining us. It's nice to see you again. You know that we just saw it was kind of a mini version of a caregiver support group in fact you were you were there what we were discussing

Now why is that sharing so important for people who give care. I think it's important for a variety of reasons. I think one of the number one reasons is that many caregivers feel so alone in their experience of providing care. They are so isolated. And they're reluctant to talk to other family members or to other friends about it because they get cues from them that they don't want to hear it. It makes other people very uncomfortable. So when you can go into a room and start talking about your experience as a caregiver and be really understood. I think that's where the real value of the support groups are for family members. Yes people get a lot of information. They share a lot of information about resources and about what's available in the community about what's worked for them about what's not work for them. But it's that sense of community and that sense of belonging and that sense of being understood that I think is really healing and helps

people move to the next step. But is it for everyone. Because as you know my mother has Alzheimer's and my brother is taking care of her. But he'd say you know the last thing I want to do in my free time is get together with people to talk about what I do most day all day long. How would you respond. I would respond to him that that certainly support groups are not for everybody but there are other ways of getting information and getting support. And I would also encourage him that maybe with his own reluctance to do it but he might find that when he does join a support group that or comes to an education meeting and hears from other people might not have to be a support group that you go to every week or every every two weeks but someplace where you can begin to get the information we're going to get some help for yourself. You're going to feel a little less burdened and a little less alone in this. Some people like to use the Internet. Some people you know information in and of itself I think is a very good coping tool for people. Now one of the biggest challenges for

caregivers. There are enormous challenges for caregivers. I mean is it emotional financial. I think it depends upon the caregiver. I think and it depends upon the relationship of the caregiver to the person that they are providing care for. So for a spouse who's watching somebody who they've loved for 40 or 50 years and have a very close relationship with it's extraordinarily painful to see that change. It's a different kind of pain for an adult child to watch a parent go through this. I think the fact that that the kind of life script that people had envisioned for themselves is now being. Written differently and in a way that they have they feel that they have no control over. So it is a huge psychological bombshell this diagnosis of Alzheimer's disease. And then there's the worry and the exhaustion taking care of somebody with Alzheimer's disease. It's a 24 and we say a 36 hour day. And I think you might experience this yourself that even when you're at work or you're having a good time with friends

there's a part of your brain that's still thinking about gee I hope mom's OK I hope that nothing's going to happen. So there's a little bit of worry and anxiety that constantly haunts you all the time. There also is the physical demands of caregiving as somebody of a choir choir is more and more care. They need help getting in and out of the tub they need help getting dressed and you know I've heard stories of elderly spouses who are you know bending down and putting on the socks for the for their husband and getting him you know ready for bed at night and she is just absolutely exhausted and she herself has not been going to the doctor and been neglecting her own well-being. So there are many many many challenges and Simers caregiving. Now we talk about the Alzheimer's Association offering an umbrella of support. Tell us what the Alzheimer's Association can actually do to somebody who's a caregiver. The Alzheimer's Association and its chapters nationwide have a whole host of resources and services available for family members. Number one I think is our 24 hour help line that families can call. Sometimes it's not so easy to call during the day if you're at work

but on a Saturday morning or on a Friday night if you're exhausted and need to talk to somebody or if it's 4:00 in the morning and your husband has just gotten out of bed out of bed for the third or fourth time and you are you just you're about ready to scream and you have nobody to scream to. You can call the association it's an 800 toll free number and they'll be somebody there at the end of the line who will be able to hear your situation provide some guidance and most importantly listen to you. We also have a lot of educational materials. We have education meetings. We have a program called Safe Return which is critical for people who are. Cognitively impaired because they are at risk of getting lost when they go out. And even with you know vigilant care somebody can get lost in the blink of them. So in rolling your family member in safe return is always a good idea. We also do a lot of training for both family members and for power professionals and professionals who work in this care.

Well Jett thank you so much and thank you so much for all the good work you do. My pleasure. And now here's a story of someone who cared for his father at home for 15 years before placing him in a nursing home. Tom the youngest of four children assume the role of caregiver. He says it's been rough but he wouldn't have it any other way. Culturally. In Chinese tradition families are. Expected to take care of each other especially for the elderly. It's just expected that the children are supposed to care for them as they get older and instead of. There's no idea of shipping them to a nursing home it's to take care of them in your house. And unfortunately there are a lot of realities where everybody is just so busy. So. The idea that. You have to take care of your elderly kind of gets pushed aside. My father grew up in Hong Kong. And he was the son of a butcher. But he was very smart. Whatever test he took. He aced and he ended up going to one of the best universities in China. Unfortunately when he came to

United States because of his English he couldn't live the life that his education should've given him for about 30 years he operated sort of like a variety store in Chinatown. And it was a great relationship between his store and the community. He decided that Chinatown needed housing affordable housing. So for 15 years Stephen want to make middle income housing in Chinatown a reality. He secured state funding for Confucius Plaza which opened its doors in 1978. My father showed signs. Forgetfulness and maybe the onset of dementia. About 15 to 17 years ago. For my mother it was tough because she was in denial that my father was mentally deteriorating. They would come into town together and she would be at least two car lengths in front of him saying Come on come on let's go let's go we've got to get on the bus hurry up. I think she kept thinking to herself that

if she treated him like he had an illness then it's just going to get worse. If she treated him like there was an illness that he could overcome it that somehow miraculously he will overcome it. At the time that my father's dementia got worse I didn't know if there were any organizations or services out there that could help me. All I knew was I had to take care of the situation at hand. So I started looking into daycare services for seniors. Hamilton Madison house was the first Asian based social program in New York City. STEPHEN LONG attended the program for a year and a half. I think having a daycare center for seniors that's not just restricted to three hours a day I mean a full day. Is it something that's just so necessary because it's actually coming out and sort of like going to work or going to a place where they have their dignity whether they have dementia whether the mentally capable of. I was thinking on their own they need a place where they feel important where they feel their They're

active in the feel that their lives mean something. But now he's in a he's in a nursing home because once again we came to a new crossroads. He needed professional care around the clock. I remember growing up and walking down the street with him and everybody would say hello to him. Everybody would just stop and say hello to my father. And I used to be so proud of that. And so now. The idea that he's in a nursing home is it's it's really it hurts. It really does hurt. It was difficult for me but I'm I'm glad that I had my wife to help me. My kids have been fantastic even though they're 10 years old they understand what's going on and they're just very patient. Because a caregiver has to sacrifice all that family time that they're supposed to be devoting to their own family. Somehow everybody has to understand and sacrifice. My mother and father raised me and I think that the least I can do is as in this stage of their lives be there for them.

And. I think the most important thing is that they continue with dignity. And fewer that are still love and not be sad about being old. Joining us now is Dr. Steven Ferris the freedmen professor at the Silberstein Institute of New York University School of Medicine. Dr. Ferris is also the director of the Alzheimer's Disease Center. Dr. Ferris thank you so much for joining us. It's my pleasure. First of all Dr. Phares how do we diagnose Alzheimer's. This is standard diagnostic work that generally leads to a fairly accurate diagnosis it involves good medical history studying whether there are any particular medical conditions that could be contributing to the problem and then evaluating the nature and extent of impairment that may occur in memory and other cognitive functions. And from that whole picture one can determine whether there is specific general criteria for a diagnosis of Alzheimer's are met or not. But you can't diagnose for Alzheimer's unless there are symptoms already.

You cannot diagnose today Alzheimer's unless there are symptoms of cognitive decline that is markedly more than the amount of the Cline that most people experience as they get older. And secondly we can't be 100 percent sure but in the hands of an experienced physician in dealing with this disorder is greater than 90 percent accuracy. And how do you think that the disease exists before it's diagnosed. Some people think it could be a period of 5 to almost 20 years. That path ology is slowly accumulating within the brain. Before we even have clear symptoms we can only make a diagnosis clinically today when we have evidence of symptoms. Now are there advantages to an early diagnosis. When there are symptoms there are advantages to making the diagnosis as early as possible. Because we do have treatments that can help

blunt the symptoms a little bit. And there are other things we can do to optimize the care and future of Alzheimer's patients. There's currently no advantage to making a diagnosis in the absence of symptoms if in fact we were able to do that which we're not because we don't have any preventive treatments that have been proven to be effective at least at this point in time. Well let's talk about treatments once a diagnosis is made. What treatments are available. There are currently four treatments officially approved by the FDA for treating symptoms of Alzheimer's disease three or in a certain or a chemical class that affect certain memory system of the brain the so-called colon urgent system. And then there's a fourth drug most recently approved that affects a different nor a chemical system in all of these for all of these drugs. This simply had been proven that they have quite modest benefits in making people function

a little bit better than if they weren't taking the treatment. Unfortunately none of the treatments that we have at present expected to slow the disease or prevent the disease. What's the most promising area of research that you're finding. The exciting thing in the field right now. It's sort of two pronged. One is the ability in the future to make diagnoses earlier and earlier using biological parameters. Studying something in the blood or in spinal fluid etc.. There's a lot of order using a brain imaging technique to see the pathology in the brain even before you have symptoms. So these approaches are very exciting we don't quite have them in hand for everyday use but they're very exciting coupled with that is the fact that for the first time we are release we are actually studying in clinical trials treatment strategies that may well slow down the progression of the disease. None of these new treatments have been

proven but we're beginning to address the more basic pathology of the disease and we're conducting trials which I think within the next few years are going to lead to treatments that at least slow the disease. And I've read that if you do find that if you can slow down the disease you can actually reduce the incidence of Alzheimer's how does that work. Well it's pretty simple it's just based on the statistical model of the increase in the occurrence of a disease as you get older. The older you get the greater the risk of Alzheimer's. Also the older you get the more likely you're not going to live that much longer I see. So if you delay the onset from 80 to 85 then the likelihood is that someone who wants given actually projected in a statistical sense that if you could delay the average age that people get Alzheimer's by just five years you have to limit a disease just delay it. You'd cut in half the future number of cases.

OK. Finally how about actual cure. How about the prevention of the disease or the reversal of the disease. Is that in the near future. Very much so. As I said we're studying treatments that may slow down the disease in patients who actually have the disease. If any of these treatments actually work even a little bit then there will be large so called primary prevention trials some of which are actually on the way to take people who are old but don't have any symptoms of Alzheimer's treat them with one of these possibly preventive treatments and see if we can reduce over time the emergence of symptoms for the first time. And we're actually close to having those types of trials bear fruit. Well let's hope so Dr. Phares thank you so much. You're quite welcome. We turn now to the Institute for Music and your logic function a Beth Abraham a long term care facility in the Bronx where researchers are exploring the effects that music has on the brain. What they're finding is that music has a real therapeutic value for patients with dementia.

Last. Time was patients exposed to music therapy. Some incredible things are also seeing patients who were previously mute unable to speak. Well all of a sudden saying. Patients will begin to sort of a rhythmic sense start tapping out the rhythm of the tune. And then you see a transformation in the face indicating some emotional connection has been made to the music that's that's being played. When this group first started about a year and a half ago I would say about 70 percent of them would fall asleep during the session. And about three months and these people were really becoming involved I started calling out suggestions and really remembering memories and and learning new songs and remembering from week to week so their personalities are immersion trying to he's that if

degenerate if these people have actually improved since I started working with them. A dramatic transformation. My mom for example she was extremely with us today. There's been a few times where she's been almost too confused to participate in the group and today you can notice in her a bit of a shame that it's not it's not. Sometimes totally under you can't understand exactly what she means but when she gets going with the music it all makes. Finding out what parts of the brain have to process music. It's been a recent accomplishments. We found out that it's actually many many areas of the brain. Is just. Beginning to learn about what we call cerebral plasticity the brain

changes when exposed to music with musical practice. We're beginning to see. That they are actually hardwired neurological changes that depend on exposure and practice to music. This is very exciting. Which leads us to the question of why how you consider cool what unlock patients with Alzheimer's disease to the sick. How is it that the alzheimers patient. Who. Sits in a chair. And has very little communication with the outside world. You put on one of those old time songs and they're either in tears or they're actually singing along. What is it about music that allows them to sort of break out of the shell that they're in. And the answer I think again comes to the connection between music and emotions since music is intrinsically and I guarantee an emotional

experience. It aids memory. Automatically. All you have to do is think of the lyrics of how many songs you know versus the words of how many poems you know and you know that one saying is true I think we as human beings once we start talking once we're infants and learn how to say our first two words people encourage communication through speech and communication through words. One of the tragedies of relationships that happens when somebody is losing speech is that their caregivers or loved one feels at a loss they feel like the person is not there anymore. Consistently the communication over things like love. Things like Hope things like happiness with sadness or with if it can be experienced and can be you know shared musically it even when the words although they have those moments can be shared that is if you like them. Yeah that reminds you of something. Thomas he actually had some tears over one of the songs which brought back a memory of his child so we

talked about the children. Thomas's oldest kid is 45. And that song made him think of his children. I think that's a good. Is that a good memory. Children are usually good memories on the way as to mention all timers to progress. It's very characteristic for the speech mechanism to I guess fade away. And this music people that active because we demand each other to communicate and to participate. How. Long you can keep the person engaged to want their attention their focus was engaged then at these moments of improvement that I found out from the nursing staff with actually carry over into the next thing that went on in the day. I've actually had family members tell me that after a music therapy session today they're recognized more frequently by their family members with Alzheimer's and they have

more coherent conversations after the music. Is it long lasting. I don't think it matters. I don't think that the goal is to reverse this disease music is not going to reverse the disease. The disease is a one way street but at least for one brief moment. The patient again comes in assess whole. Connected to their emotions connected to other people in the room connected to something outside of themselves. And. Isn't that enough. For. Us. Dr. Park to my SO is a clinical psychologist who provides psychotherapy for patients in nursing homes. She also works for the Alzheimer's Association as a training consultant for staff members of nursing homes with dementia programs. Pat welcome. Thank you.

Now we just saw looked like a very good dementia program. Now first of all how do we find a place with the right underlying philosophy I guess to provide such a good program. OK. Well the first thing I would recommend to somebody looking for such a program would be to contact their local also means association. There's another organization called Fria which is run. Family and relatives for individualized aged and they have resources they can direct you to nursing homes in your area which may or may not have dementia programs but are very good nursing homes. In addition to that I would recommend that somebody check out the nursing homes on their own. Just go in and ask to have a tour. And ask to sit in on a program for half an hour or so and really just look at. The people and the staff how they relate to each

other how the staff relate to the folks with dementia how the folks themselves relate to each other. Now what's the best way to communicate. With someone with dementia whether in a nursing home or in your own home. There is no one best way. There were a number of things to think about. For example it's important just to have in mind that you're not dealing with a child just because a lot of their faculties are impaired. There are people again with histories as I've talked about. And so you might want to approach them. First of all you wouldn't want to stand over them you would want to do what we're doing making eye contact sitting at the same level you might want to speak more slowly so that they can take in what they're hearing and make sense of it and respond to it. You might want to use your facial expression more so that they can pick up social social cues and emotional cues. They're very good at that. It's

that's not part of the illness really their emotionality is still very much intact. Now it's been my experience because my mother has Alzheimer's that the tendency at least in the beginning is to think well if I just communicate slowly logically that she will understand. Now that that's not right either. Well the Slowly part is good. The logically I'm not so sure about if you said to her you want to hop into the shower now she might think that she's supposed to actually hop over into the shower. So it's really just being a little bit more. A little bit simpler about the way you put things so that they don't have to strain so hard to follow you. It's also best not to say too many things at once. You wouldn't want to say Would you please stand up go over and take this book and put it in the in the bookshelf because you've given too many different things for them to think about. Or if you're going to dress them in the morning you wouldn't say what would you like to wear

because then they have to think about what's in the closet. And with their memory impairment that's not going to be easy to do. So you might say it's time to get dressed now would you like to wear a pink dress or the blue dress. So it's giving them choices but not too many just thinking it through a little bit and perhaps editing out things that don't really make sense when you when you think about them. Well thank you so much. My pleasure. And that's it for this edition of YOUR VOICES health we hope you found the information we provided during this past hour useful for you and your family your money. Thanks for joining us. Program segments and links to all summaries disease resources can be found at the

New York Voices website at 13 dot org slash and wind voices. Major funding for New York Voices help is provided by the cocobolo Family Foundation. Additional funding is provided by the Orion Terry Krumholz foundation. Michael Timor and Elisa Jaffe and Jeffrey Brown and members of 13.