Facing Alzheimer's: An African-American Perspective   View more episodes

Aired at 11:30 PM on Tuesday, May 19, 2009 (5/19/2009)      View all transcripts from this day


00:00:38(Joyce Nunley) WHEN MY MOTHER WAS FIRST DIAGNOSED, It was like my heart had justbeen torn out of my chest.
00:00:47She used to, like, be my friend, my best friend.
00:00:51I used to, like, call her 00 in the morning, and then when I get ready to go to bed at night, I used to always talk to her.
00:01:03Then she started acting strange and stuff.
00:01:07I didn't know how to deal with it.
00:01:11.. I hurt real bad.
00:01:13Just thinking of talking about it now, it just still stirs up a lot of emotions and stuff.
00:01:23Mother's been living with me for about a year now.
00:01:34It does help.
00:01:38But right now I'm off work for stress, and I really am having a hard time making a decision what to do so that I can continue to work.
00:01:51It's not easy.
00:01:55We started treating her like a child ..
00:02:01Maybe start like ten years old, then when she declined, we treated her like a five-year-old, which would make her angry.
00:02:12... Because to keep my mother occupied, my sister brought her coloring books and crayons.
00:02:16And my mother would throw themat her, and she would say, " even in the early stages of her disease, when she was living with me, I would still take her toparties, and I would tell people what was going on so they wouldn't be surprised.
00:02:29But they would still enjoy talking to her, and we just never shut her out.
00:02:33But I think that that's as much for the caregiver as it is for the victim.
00:02:39(Richard Steele) THERE ARE ACTUALLY TWO VICTIMS When you're dealing with alzheimer's-- the individual who hasalzheimer's and the caregiver.
00:02:47And sometimes it's hard to determine just who is suffering more.
00:02:51Alzheimer's is the most commonform of a group of conditions known as dementia.
00:02:56It's a progressive, degenerative disease that slowly attacks the brain and results in impaired memory,thinking, and behavior.
00:03:05Hello, my name is richard steele.
00:03:06It's estimated that more than five million americans have alzheimer's, and unfortunately, that number is expected to triple by the middle of this centuryunless a cure is found.
00:03:17Alzheimer's does not discriminate against age or sex or race.
00:03:22It can affect anyone, but in many instances, our black culture, our backgrounds, our upbringing have guided us to insulate ourselves, to resist sharing our personalproblems with others.
00:03:34The truth is it doesn't have to be that way, and this is the challenge we must face.
00:03:40You need to know that it's all right to reach out, to share your burdens and concerns, to seek help outside of your family.
00:03:47We hope that this program willintroduce you to new resources, answer a lot of questions, and dispel many fears.
00:03:55But most importantly, wehope that it will reassure you ..
00:04:01That you're not alonefacing alzheimer's.
00:04:09(Torchee Smith)IT'S IMPORTANT TO SEEK HELP.
00:04:12It's necessary to seek help.
00:04:15But a lot of times peoplereally aren't aware that there is any help.
00:04:21I mean, that old saying that I'm in this by myself is really true when you talk to families and they say things like, "i didn't think there was anyone else "who was feeling this, who was going through " culturally, african-americans would like to take careof their loved one with any kind of medical problem themselves.
00:04:43They'll try to handle it themselves, versus take them to the doctor for some major issue or put them in the nursing home.
00:04:51They would prefer to do that themselves.
00:04:53Within the african-americancommunity, there's a sense ofcommitment and duty that is experiencedwithin the family and a sense of reverence with caring for elders.
00:05:05Consequently, to turn externalto the family and seek help suggests a lack of a commitment.
00:05:13And it also suggests that you're making public the inability of the family to provide care.
00:05:20It's very difficult for peopleto watch their loved ones-- their mothers, their brothers,their fathers, their sisters-- to deteriorate and not know from day to day whether or not they're going to remember them.
00:05:34When you've had a family memberthat's lost their memory and they're not able to feed themselves any longer or dress themselves, it's very hard on those families.
00:05:46who has it, the physical, emotional, and financial challenges that face the caregiver are often even more overwhelming.
00:05:57So how can you, how do you cope?
00:05:59The answers aren't simple, but the more educated you are about alzheimer's, the more supportive you can be as a caregiver.
00:06:06The fact is, help does exist for the caregiver in many different settings.
00:06:10You just need to know how and where to find it.
00:06:13But first, you need to determine is it alzheimer's or is it just old age?
00:06:20When I talk to familiesabout alzheimer's disease, they often ask me, youknow, well, how do I know if this is really alzheimer'sdisease or is this, you know, just my mom getting older?
00:06:30And there are some signs that you can look for.
00:06:32The most common is a memory loss that's very frequent.
00:06:36Anani'm not talking about just forgetting where you put your keys or forgetting your grandchild's name.
00:06:43These kinds of memory losses are much greater.
00:06:46Alzheimer's diseaseis more forgetting that you are forgetting,all right, and that's what happensas if that memory, that episode, never occurred.
00:06:55We realize that this diseaseprocess is one by elimination, to make sure that there's noother underlying medical problem that can cause your loved one tohave altered ..
00:07:07That means changes in behavior, changes in their activities through the day, loss of memory, loss of their whereabouts, and even loss of physicalability--the ability to walk, the ability to be able to control their urine, and even to the ability to eat.
00:07:25Are they unable todo certain things that came very easily for them, in terms of are they havingdifficulty cooking, if they were an avid cooker, or sewing, sort of household chores?
00:07:40Sometimes patients willforget family members.
00:07:43..they won't recognize them.
00:07:46These sorts of things are fairly typical of the presenting symptoms for the alzheimer's patient.
00:07:54If your loved one is showing behaviors like these, it's important that you seekprofessional help and support.
00:08:01Perhaps start by consulting with your family physician or find a geriatric assessment center, which may even be associated with your local hospital.
00:08:09You can check your phone book for the listing of the department of aging in your community or see if the alzheimer'sassociation has a local chapter in your city.
00:08:18One of the easiest ways to answer your questions is to call the national alzheimer's association contact center.
00:08:25It's accessible 24 hours a day, 7 days a week, with a trained staff ready to address any issues dealing with dementia.
00:08:33Any of these groups can guideyou towards professionals that can help evaluate symptoms.
00:08:40If you sense there might be a memory problem with your loved one, don't wait to get answers.
00:08:46It's really important if yoususpect memory problems to get an early evaluationand diagnosis and treatment plan because there are some effective treatments that help delay or forestallthe progression of the disease, and also it helps get an accurate diagnosis and make sure there's not other medicines or other medical problems contributing to the memory problems.
00:09:05And I think, in general, thesooner you start that process the better, for a wide variety of reasons.
00:09:13And probably the most important is that alzheimer's disease tends to get worse and your memory tends to get worse.
00:09:20And what happens is that early in the disease, people can actually participatein making decisions about how they want to be cared for.
00:09:27So making a diagnosis earlyreally empowers the individual who has this condition.
00:09:33That makes it easier for everyone involved.
00:09:37The folks with dementia are safer.
00:09:39The caregivers feel more supported, and the patients with dementia get better care because they've sought care earlier.
00:09:47Determining whether your loved one has alzheimer's needs the evaluation of a specialist who is qualified to make this assessment.
00:09:54The first thing is there are notests for alzheimer's disease.
00:09:58There's no blood test for alzheimer's disease.
00:10:00There's no brain scan for alzheimer's disease.
00:10:02There's no genetic test that we give routinely now, so basically, making a diagnosisof alzheimer's disease is listening to the family and the patient about the kinds of problems they've been having, how it's evolved over the lastseveral months or few years, ..
00:10:23a face, a picture of a face.
00:10:28... Which could be as simple as reading somebody a story and then asking them what they remember.
00:10:34If a family is witnessing ornoting some of these symptoms, it's always good to take a journal to document the events that they're noticing.
00:10:43It provides a record, a history, if you will, so that when they later see the physician, there's an added history there.
00:10:51It also helps the physician in diagnosis of the eventual problem.
00:10:57Accepting the diagnosis means that there are many new challenges ahead and emotions that you're going to discover.
00:11:03One of the best ways to work through your feelings and to receive emotional support is to find and join a support group.
00:11:10They're my support, becauseif an incident ..
00:11:14If an incident occurs, you do need someone to talk to.
00:11:17And I like to talk to someonewho's gone through this, because no one who hasn'tgone through it can't help me.
00:11:23.. they don't understand.
00:11:25(Jacquelyn Vincson) EVERYONE THAT COMES HERE Thinks that they are alone.
00:11:30When they come into the group, they think the things they've been experiencing with someone with alzheimer's is unique.
00:11:36One of the feelings thatcaregivers have is isolation.
00:11:41You feel very alone and isolatedcaring for ..
00:11:46One, because you're probablythe only one caring for them, but you think you're alone.
00:11:51And when they sit in the groupand we go around and they hear person after person saying the same exact thing, and that in and of itself is a help.
00:12:02I realized I needed help about six months after I actually needed help.
00:12:10Um, it just took me that amountof time to admit it to myself, or to come to the realization of that.
00:12:19(Jacquelyn) IT'S IMPORTANT FOR PEOPLE TO Come to a support group .. it is support.
00:12:25A lot of people don't like to attend groups, but the group is very important because you learn.
00:12:32You learn about services that can help you in your caregiving.
00:12:37..you develop an understanding of behaviors that are going onwith someone with alzheimer's.
00:12:48When it comes to caregiving and the alzheimer's patient, you must remember that each individual is different.
00:12:54And because this disease is progressive, there are certain programsthat help in the early stages and others that help later.
00:13:01In the early, more manageablestages of alzheimer's, home health care is often an excellent consideration for the caregiver and for the person with alzheimer's.
00:13:12Hello. hi, how are you?
00:13:15How you doing? oh, pretty good today.
00:13:17(Carmen Jones)WELL, OUR MISSION AS A HOME-CAREAGENCY Is to keep that client in the home in a familiarsurrounding with his loved onesas long as possible, because we feel that that wouldbe the best for the caregiver and the family member.
00:13:32And caregivers feel goodwhen they can accomplish that.
00:13:36Home health utilizes the team approach because we recognize that we're dealing with multiple problems in many cases.
00:13:44Has the medication profile been updated at all?
00:13:47She's getting tylenolfor complaints of pain.
00:13:52We are a team, andthat team includes many times a psychiatric nurse, , which is the registered nurse, the lpn, the licensed practical nurse, the physical therapist, the occupational therapist, and of course, the certified nurse assistant, who assists the nurse in her job and duty.
00:14:15In order to provide care for the patient, then we all have to get together as a team to provide the best care possible for a patient and his family.
00:14:27There may be a need for an occupational therapist to come in to assist the patientin learning simple tasks like getting on and off the toilet.
00:14:36On the other hand, there may be physical needs that the physical therapist can come in and help with.
00:14:41If patients are having difficulty walking and develop unsteady gait, then the therapist can come in to provide therapeutic exercises and strengthening exercises.
00:14:54In addition to medical service, home health provides assistance with homemaking, nutrition, if they need meals on wheels,transportation, social work.
00:15:07Whatever services are needed, the home health-care agency will support.
00:15:12(Renee Foster-McFarland) HOME HEALTH IS A Very important part of that health-care continuum because home health allows thosepatients to remain in the home.
00:15:21That in itself is what sets home health apart from all other areas of health care.
00:15:28It is, it's isa wonderful thing, because if you didn'thave the health care, I wouldn't be able,you know, to do itall on my own.
00:15:36So that's a wonderfulthing that we havenow today.
00:15:43Well, good morning.good morning.
00:15:46Come on in.
00:15:46 fine, and you?
00:15:49All right.
00:15:51(Richard)IN ADDITION TO HOME HEALTH CARE, There are other options, like adult day care, which is one of the most helpful resources for both the alzheimer's patient and the caregiver.
00:16:02(Joyce) IT WAS VERY PAINFUL.
00:16:03It took me almost two years tojust really accept the fact that she had alzheimer's, that she was changing and I wasn't ready for it.
00:16:15I didn't know how to deal with it.
00:16:17I didn't know what to do.
00:16:19Knowing that she'shere at the day care, I can go to work,be at peace.
00:16:25I don't worry about herlike I normally do.
00:16:28I mean, I love it here.
00:16:30I call up here and check on her to see how she's doing, and she's doing fine.
00:16:36And I wouldn't know noplace else to send her.
00:16:39This is like my life support right here.
00:16:43.. ♪♪♪♪
00:16:46(Dorothy Seman) MANY OF THE FAMILIES WHOSE Relatives come to day care find out one of the moreburdensome things to deal with is the fact that that person cannot be involved in any self-sustaining activities, that you have to be right there with the individual to help provide that subtle coaching that allows that activity to continue.
00:17:05In day care, those activitiescan be replenished and resupplied or refocused, or you can move on to something else.
00:17:12Also, in many home settings, I think that the person withdementia is less and less able to keep up with the flow of activities at home, so in day care, the environment is made a little bit more prosthetic,a little bit more supportive based on the skills and abilities that that person still has.
00:17:27We try not to offer tasks that are no longer useful or interesting, and offer those that are.
00:17:32Well, I like coming herebecause when I was at home, I didn't have too much to do.
00:17:36But when I was here,when I came in here, I learned a lot of things, and I really appreciated it.
00:17:42When I'm at home, I'll be lonely, and when I'm in here, I have a lot of friends here, and we have a very nice time.
00:17:50I wanted somebody that would,like, take care of my mother, ..
00:17:55Treat her like an adult and not like a little child, even though she might be goingback into childhood and stuff, and just, you know, give her respect.
00:18:04As time goes on and the alzheimer's patient becomes more and more dependent, an even larger decision often must be made.
00:18:11Transferring the responsibilityof care to long-term care is generally an issue the entire family must work together to resolve.
00:18:22(Julia Harris-White) THE DECISION TO PLACE A loved one in a nursing home is a major decision, especially from theafrican-american community.
00:18:29We are a proud people,and when I say that, I mean that we're used to takingresponsibility for each other.
00:18:35And for someone to have to come to the point of dealing with putting aloved one in the nursing home, they sometimes deal with guilt.
00:18:42Most of the time they deal with guilt.
00:18:44It's that separation process.
00:18:47When families first actuallycome to the facility to see me about placement, generally they're upset.
00:18:54They are very emotional.
00:18:55They feel guilty about whatever's going on in the household.
00:18:58With an alzheimer's dementia,they're a little apprehensive.
00:19:02Whatever they've heard about a nursing home, they have all these fears and anxieties.
00:19:07And the foremost thing that they want is for their loved one to be safe.
00:19:14(Danelda Perrin) SOMETIMES I WOULD FEEL Guilty because I felt like I couldn't give her all the proper care, and I was wondering was itsomething that I did wrong.
00:19:22And then there were timeswhen, you know, I just wanted to hold her, you know, and just hug her, because I knew she didn't know who I was.
00:19:31You got a little tired, huh?
00:19:33(Johnnie Bell Copper) YOU KNOW, AT TIMES, He would rebel against me.
00:19:36It's like I'm the dad, you know?
00:19:39" but I would try to explain tohim, "i'm trying to help you.
00:19:44"It's not that I'm taking over--i'm just trying to help you "and still be your daughter all at the same " it was mental and physical stress on me, so I had to do something.
00:20:05Initially when a family comesinto our facility for placement, first and foremost, they're afraid.
00:20:11They are afraid of losing control.
00:20:13They're apprehensive of putting their loved one into a facility, that possibly the facility won't understand the needs of the patient, just numerous things.
00:20:23So we try to let them know that they're not alone, they're not the first one to go through this, and unfortunately, they won't be the last.
00:20:30facility, but I knew it wassomething thatshe needed, because she wasprogressing to the point that a lot of timesthere were things thatwe just could not do.
00:20:40(Julia Coleman) I THINK WHEN A FAMILY MEMBER Is looking to place into a long-term alzheimer's dementia unit, the first thing that they need to find is a unit specializing in alzheimer's dementia.
00:20:53Another thing is that you want to make sure that they incorporate daily activities that are assigned and designated for alzheimer's dementia residents, which is very important.
00:21:02Who is this right here? that's my daughter.
00:21:04That's elizabeth? that's elizabeth, yeah.
00:21:06What does elizabeth do?
00:21:08Activities are very important with residents who havealzheimer's disease, because it's their whole day.
00:21:14From the time theyget up in the morning till late in the evening, everything should be conducted as an activity.
00:21:20It enhances their self-esteem,enhances their independence in the things that they are able to do.
00:21:25Exercise programs enhance their physical functioning.
00:21:28So activity programs have a broad range of benefits for the alzheimer's resident.
00:21:35(Torchee Smith)THE ROLE THAT A NURSING HOMEPLAYS In the continuum of care with a patient with alzheimer's disease is that we bridge the gap between the caregiver and the patient, and we bridge it in a way that the quality of life is maintained, that the families would like to maintain but can't because of circumstances.
00:21:53If families know that we care, then they know that we care enough to provide quality care for their loved one, and that's very important, and it's real.
00:22:03(Lonnie Bearden) SHE CALLS THIS HOME NOW.
00:22:08Prayer is a lot of help for me, and I can get through it with some prayer.
00:22:14And I thank god for the teachingthat I got at my church.
00:22:20The church members visited my mother regularly, and they sent cards to her on a regular basis.
00:22:26(Lonnie) THE CHURCH HAS BEEN A VERY BIG HELP With my mother.
00:22:30And she thought they would forget about her, but they haven't.
00:22:37(Richard) THERE IS YET ANOTHER IMPORTANT Source of strength that will always be there for you.
00:22:54I am very grateful to the church for the foundation thatthey've given my grandmother, that even in this, her diminishing state, that is something that she canstill cling to and celebrate.
00:23:07As forgetful as my grandmother is, when she gets in church, she can remember hymns, she can remember people, and she just comes alive when she's at church.
00:23:22I do believe that the roleof the church goes beyond giving just spiritual adviceto our parishioners.
00:23:30The role of the church is an extended family approach to all of the members of the church.
00:23:37And so what we'd like to do is to say to them that while the church is very important and we want to stay very close to our parishioners in their moments of need, we also want them to know thatthere are other resources available to them, that they can have available,that would be helpful for them, and the church would be withthem in that process, as well, of getting additional help for eir ved ones.
00:24:02I'm grateful for the people in the church mmunit that reach out to my family, who embrace my grandmother and encourage her.
00:24:11The church has been truly a rock through all this.
00:24:14And those of you who aren't inthe church, I would welcome you to come in and let us embrace you.
00:24:22A primary reason that our community, the african-american community, may not be getting and accessing the kind of help that's available to them is due to a lack of knowledge and a clear understanding aboutwhat alzheimer's disease is, and how it should bedistinguished from normal aging.
00:24:44(caregiver)IT'S VERY IMPORTANT TO GET ASMUCH Information as possible about alzheimer's disease.
00:24:50You can get information from books.
00:24:52You can get information from brochures, from the alzheimer's association, from videotapes, from the internet.
00:24:59There are so many resourcesavailable for family caregivers that weren't even in existence ten years ago.
00:25:08There are support groups in the community.
00:25:11There are religious organizations.
00:25:12You can reach out to anyoneand get help with this disease.
00:25:16I think a lot of times, as african-americans, we feel that we can do this on our own, you know, that this is happeningto us for a reason, and that we can make it through.
00:25:26And you can make it through, butyou don't have to do it alone.
00:25:29.. there's people out there who care.
00:25:36When the world of someone we love very much slips out of focus, we must find the courage withinourselves to help them, and at the same time, findthe strength in our own lives to help ourselves.
00:25:48You, as the caregiver of someoneafflicted with alzheimer's, must allow yourself the right to reach out and receive guidance and support.
00:25:57That's our message.
00:25:58We hope that this program has shown you paths that you can follow and explore, that when facing alzheimer's,you need not do it alone.
00:26:07.. thank you for watching.
00:26:12The advice I would give to the relatives or caregivers of patients with alzheimer's is number one, be sure that you have a good physician who's familiar with the illness and can explain the stages to you.
00:26:27If you have knowledge about the stages, if you know what to expect,it's a lot easier to deal with.
00:26:33So my advice would be to tell everybody you know " and there are agencies and different services or a particular individual whomight be able to point you into one direction.
00:26:49If I was to give advice to a family beginning to go through this struggle, " there are plenty of people within our own community that are very experienced and knowledgeable in dealing with alzheimer's patients.
00:27:04I think it's a process.
00:27:05I think the first thing thathas to happen is an awareness ..
00:27:12Someone out there who knows about this, and I think this is a great first step.