We are pleased to welcome Michelle S. Bourgeois, PhD, CCC-SLP, as our guest chat host tonight, Monday, February 11th, 2002. Dr. Bourgeois is a Professor in the Department of Communication Disorders at Florida State University, and the Research Coordinator of the Tallahassee Memorial Memory Disorder Clinic. She is involved with grants for developing memory interventions and training programs. Her Memory Book treatment has been featured on "Agewise- Living Better", a nationally syndicated television program for the elderly. Dr. Bourgeois' research interests include increasing effective communication in nursing homes and skills training for caregivers. She will lead us in a chat tonight about dementia and reading. Dr. Bourgeois has provided us with a list of resources which can be found at the bottom of this chat transcript. <Robin> Hi Dr. Bourgeois! Glad you could join us tonight! <MBourgeois> Thank you for inviting me again! <Robin> We are chatting tonight with Dr. Michelle Bourgeois about dementia and reading. <Robin> Dr. Bourgeois, would you like to give us some basic info on this topic? <MBourgeois> Sure - it has been commonly assumed that persons with dementia lose their ability to read and comprehend what they read. <MBourgeois> But in my clinical research with patients with dementia over the past years, I've gathered some data to suggest that reading in fact may be a preserved ability. <Robin> That would be a great help to assist in functional communication with this population <MBourgeois> In my memory book research, I have designed a quick-sentence oral reading test to screen for the ability to read aloud at two different print sizes. <MBourgeois> And I have found that in addition to being able to read large print well into the end stages of dementia, that most persons will read aloud the sentence and then elaborate about it. <MBourgeois> These elaborations are usually indicative of comprehension. <Adrienne> So the sentences act as jump-starters? <MBourgeois> Yes, Adrienne. I sort of like to think of the oral reading as a way to access the rest of semantic memory. <MBourgeois> For example, after reading the sentence, "The dog's name is Rover." many folks will say things like, " I never had a dog named Rover, my dog's name was Princess." <ashley> That is very interesting. <MBourgeois> If you ask a person with dementia an open-ended question, you mostly get a very limited response, one without much content. <MBourgeois> But when you have a visual prompt, in the form of words, the reading permits access to related stored memories. <lisa> Is the client able to tell you what they read about hours after reading? <MBourgeois> I haven't ever had the opportunity to ask the person about what they had read hours later, but I would suspect that if they had their memory book in front of them they would be able to recall similar, if not identical information. <MBourgeois> But my work has mostly been done with personally relevant information from their memory books and not generic paragraphs or other texts. <Robin> Most memory books that I've seen have many pictures/photos in them and not too much text. <MBourgeois> That's too bad - because we do know that the pictures alone will not access the appropriate names/labels, they need the words to read. <Adrienne> Could you describe what a page in a memory book would look like? <MBourgeois> Yes, each page would have one sentence and a single photograph or line drawing to illustrate the sentence. <MBourgeois> The pages usually start out biographically..my name is..., I was born..., my parents were... <MBourgeois> Then there are pages for as much of the person's life and relevant life events as you can get pictures for. <MBourgeois> But I have also found that many problem behaviors can be reduced by putting in pages that address the problem areas. <Adrienne> What is an example of a problem behavior? <MBourgeois> For example, a person who keeps asking the same question repeatedly benefits from having the answer to that question depicted in the book. <MBourgeois> Where is my wife? The page might say, "My wife died of cancer and is buried in Westlawn Cemetary. <Robin> Good idea, because it is common to have the same question asked repeatedly. <Adrienne> Could you explain what the primary problem with Dementia is? <MBourgeois> The major symptom of dementia is memory impairment. <emms> For residents in residential care, how do you inspire staff to use the books to reduce behaviors? <MBourgeois> Great question emms - I have just completed a four year study in nursing homes where I asked the nursing aides what problems they were having with the residents and then put in pictures/sentences to address those problems. <Robin> great idea! <MBourgeois> For example, cooperation with bathing was a biggie - so I made a page that said, "Showering keeps me fresh and clean" or "It's so nice that Mary helps me with my shower." <Robin> Dr. B, what was the result of your year study with the nursing aides and patient communication? <emms> will results be available for reference? <MBourgeois> In my study, I found that nursing aides were able to learn to use the memory books during care interactions (showering, dressing , feeding, etc.) and thought they helped the resident to understand what the aide wanted them to do. <Robin> has this been published? <MBourgeois> Yes I have several publications, most of the ones about the nursing home study are in press and should be coming out soon. <MBourgeois> The memory books were small, x inch, index card size and were worn by the residents so that they were with them whenever they need to used their memory aide. <Robin> more practical that way <ashley> by reading the sentences and seeing the pictures, the patients remember that they wanted the nurses to help them, so this helped with their behavoir. <emms> Did this reduce interfering behaviors? <MBourgeois> Yes the memory cards/books helped to reduce interfering behaviors, like not wanting to take the shower. They also can serve as distractors. <lisa> How brilliant! <MBourgeois> Thanks - sometimes the simple ideas are the most effective! <emms> It is nice to hear successful use of these. <lisa> How do they become a distraction? <MBourgeois> When the resident doesn't want to shower, the aide can say, "Oh let's look at the pictures of your family while she is taking off the resident's clothes and gently guiding her to the shower. And if the book is laminated, it can even go into the shower. <Adrienne> Dr. B- can you tell us about how you've applied it to other settings...the Emergency room, doctor's office, etc? <MBourgeois> I have recently consulted at our local hospital about ways to keep confused patients oriented in the emergency room or in acute care. <MBourgeois> And what I recommend here are a hospital/unit specific set of orientation type cards that say things like. I have had an accident. I am at xx hospital. My family will visit soon. <emms> How many pieces of info, or pages are suggested , how much is to much , (pages or info) that may prevent successful use by the resident ? <MBourgeois> As for the length/size of memory books - I think the number of pages doesn't really matter - what's more important is how big the book/cards are and how portable. And how functional is the information contained therein. <ashley> In one of my undergraduate classes we recently were discussing how to alter meal time so that the dementia patient receives proper nutrition and hydration. Have you used your books in any way, to help during meal time? <MBourgeois> Yes - at mealtime you can do lots of variations. Cue cards with instructions like, take a bite, chew, swallow, can be helpful. <MBourgeois> Especially if swallowing problems are starting. <MBourgeois> I also recommend cards that describe what they are eating. Peas, potatoes, chicken... <ashley> Yes, that would be very helpful. <ashley> So are the patients more motivated to eat after reading about the foods they are eating? <ashley> I know that many off them have lost their sense of taste... so I thought maybe the books made the eating experience more pleasant for them. <MBourgeois> Yes, I also think they don't recognize the food anymore..and if it's pureed, they are really in big trouble. <MBourgeois> You can also use any kind of visual stimulus to focus conversation on things other than the food, and then gently guide their hands to get the food into their mouths. <MBourgeois> For example, a centerpiece with different flowers could stimulate conversation about flowers, colors, etc. And get the conversation off of the topic of eating the food. <Adrienne> Sounds like it requires a lot of one-on-one... is there any success with teaching people to use them on their own? <MBourgeois> Yes, I try to find ways to prop up the cards, using clear plastic napkin holders, or any other creative device. <MBourgeois> And that way, one aide can assist multiple people at one table. <emms> always a plus! <Adrienne> that's good <ashley> How do the families react to the use of these books? <MBourgeois> Families usually love the books - because if you get them involved in making them they feel like they are doing something - and they usually feel so helpless. <MBourgeois> But sometimes you won't have an interested family. And that's ok - you can always make a book about the nursing home, all the people who live and work there, things to do around the facility, etc. <ashley> Have the books been used to prompt conversations between the patient and family members? <MBourgeois> Yes, ashley - my early publications described using the books with families - but the danger there is that if you only put in familiar family pictures, the conversational partner will already know all of that information and not see the immediate use for the book - so be sure to ask about problem behaviors and make pages that address those issues. <MBourgeois> Another useful tidbit is that written information in almost any format can be useful to folks with dementia. <ashley> could you further explain? <MBourgeois> My favorite example is when a person is in the car with someone and asks a million times, Where are we going?" <MBourgeois> I have the family member write, "We are going to church." on the card and then give it to the person to hold. <Robin> great idea! <MBourgeois> What you see is the person reading the card over and over again and not asking the question anymore. <ashley> that would be a big relief to the driver! <MBourgeois> This is so easy for family members to get the hang of - and they can generalize its use to other situations. <emms> Recently an OT & I collaborated on a lady who was losing ability to dress herself. By using post-its on her closet and on the clothes laid out she maintained independence for a while longer, we transferred it to other ADL settings in the home. <Adrienne> so functional! <MBourgeois> Great ! I wish I had stock in post-its!!! This is exactly what I think is a great use of the written word! <ashley> Wow, so it really can improve the patients quality of life. <MBourgeois> I have many success stories about people who used memo boards on the refrigerator, or single index cards. <MBourgeois> Oh yes - and in the early stages of dementia, when persons are really aware of losing their memories they can be assisted with using a planner to keep track of the things they can tell you they are forgetting. <emms> I am very interested in reading your publications, thank you. Any specific resources/literature you recommend? <MBourgeois> Yes, I will be glad to give Robin and Adrienne a reference list to post in the chat archives along with this chat transcript. <Robin> That would be great...we will post the info with this chat when it is added to our archive <lisa> Dr. Bourgeois, I am really taken aback by your ingenuity and initiative. I truly appreciate you sharing your advancements with us. <lisa> My sincerest thanks <MBourgeois> Thank you lisa - but I truly believe that anyone can be creative with the problems presented by these folks and come up with simple and effective strategies - but I love doing it and will continue for as long as I am able! <ashley> Yes I would like to learn more about the memory books. They seem so beneficial to everyone, the patient, the speech pathologist, the nurses, and the family. <Robin> Any last questions for Dr. Bourgeois before we wrap things up? <emms> I' ll ask one more, any use or success with memory boxes? <MBourgeois> Yes - memory boxes are great fun for stimulating conversation. <emms> Do you incorporate the printed word with these also? <MBourgeois> I have seen them in nursing homes at peoples' doors - BUT the research shows if you want to use them to help the person find their room you need to have their name written somewhere on the box. <MBourgeois> In memory boxes that are collections of peoples' personal artifacts, there usually are written things among them. <MBourgeois> I had one client who kept the holy cards he got at his friends' funerals in his box and then he would tell me about each friend after he read their name on the card. <emms> Many years ago I used old greeting cards and handed them out daily pm to residents, calling it mail time. I was amazed at the reactions since I did not not take into account their preserved reading. <Adrienne> that's a cute idea emms ! <MBourgeois> I love the greeting card idea - I have seen that used in some nursing homes too! <MBourgeois> I would just like folks to know that I am currently doing research on the reading comprehension issues. <MBourgeois> And I hope to develop a reliable reading comprehension measure for patients with dementia that is somewhat different from the available reading comprehension measure. <Adrienne> cool <ashley> interesting <Robin> good idea! <Robin> What has your research shown thus far? <MBourgeois> I am finding that a simple non directive prompt, like "read this and tell me about it." will elicit the original reading of the sentence and some elaboration indicative of comprehension. <Adrienne> as compared to "Tell me about___"? <MBourgeois> I haven't tried "Tell me about...." - but I suspect they might not read the sentence without the prompt. <Adrienne> I mean when there is no written sentence present <MBourgeois> When there is no sentence you may not get very much content in the middle and later stages of the disease. <MBourgeois> And I suspect that we will get a great bit of repetitive behavior in those conversations. <Robin> Having worked in many skilled nursing facilities, your ideas are very practical and will hopefully be used by many slps with adults and children too! <MBourgeois> Yes - and with autistic children, using PICSIMS , and DD adults have used them for orientation, and memory supports for traveling in the community. <MBourgeois> Thanks - and it's very gratifying to see so many people using them already! <Adrienne> Have you published a how-to make memory book?. <MBourgeois> yes I have two published workbooks, one for professionals and one for caregivers available at Northern Speech Services. <Robin> Its been a pleasure having you as our guest host, Dr. Bourgeois! <Adrienne> Thanks Dr. Bourgeois!! <ashley> Thank you Dr. Bourgeois for answering our questions. <ashley> I have really enjoyed this chat. <emms> Thanks again . <ashley> yeah , thanks for taking the time to talk to us. <Adrienne> yeah! <MBourgeois> It has been my pleasure! <Adrienne> Thanks for your insights and sharing your experience! <MBourgeois> You're Most welcome! Dr. Michelle Bourgeois Publications: Bourgeois, M. (2002). Where is my wife and when am I going home? The challenge of communicating with persons with dementia. Alzheimer Care Quarterly, in press. Dijkstra, K., Bourgeois, M., Burgio, L., & Allen, R. (2002). Effects of communication training on the discourse of nursing home residents with dementia and their nursing assistants. Journal of Medical Speech-Language Pathology, in press. Bourgeois, M., Schulz, R., Burgio, L., & Beach, S. (2002). Skills training for spouses of patients with Alzheimer's disease: Outcomes of an intervention study. Journal of Clinical Geropsychology, 8, 53-73. Dijkstra, K., Bourgeois, M., Petrie, G., Burgio, L., & Allen-Burge, R. (2001). My recaller is on vacation: Discourse analysis of nursing home residents with cognitive impairments. Discourse Processes, in press. Burgio, L., Allen-Burge, R., Roth, D., Bourgeois, M., Dijkstra, K., Gerstle, J., Jackson, E., & Bankester, L. (2001). Come talk with me: Improving communication between nursing assistants and nursing home residents during care routines. The Gerontologist, 41, 449-460. Irvine, A. B., Bourgeois, M., & Ary, D. V. (2001). An interactive multi-media program to train professional caregivers. Journal of Applied Gerontology, in press. Burgio, L., Corcoran, M., Lichstein, K., Nichols, L., Czaja, S., Gallagher-Thompson, D., Bourgeois, M., Stevens, A., Ory, M., & Schulz, R. (2001). Judging outcomes in psychosocial interventions for dementia caregivers: The problem of treatment implementation. The Gerontologist, 41, 481-489. Bourgeois, M., Dijkstra, K., Burgio, L., & Allen-Burge, R. (2001). Memory aids as an AAC strategy for nursing home residents with dementia. Augmentative and Alternative Communication, 17, 196-210. Allen-Burge, R., Burgio, L., Bourgeois, M., Sims, R., & Nunnikhoven, J. (2001). Increasing communication among nursing home residents. Journal of Clinical Geropsychology, 7, 213-230. Hoerster, L., Hickey, E., & Bourgeois, M. (2001). Effects of memory aids on conversations between nursing home residents with dementia and nursing assistants. Neuropsychological Rehabilitation,. 11, 399-427. Hickey, E., & Bourgeois, M. (2000). Measuring health-related quality of life (HR-QOL) in nursing home residents with dementia. Aphasiology,14, 669-679s. Bourgeois, M. (2001). Matching activity modifications to the progression of functional changes. In E. Eisner (Ed.), "Can Do" Communication and Activity for Adults with Alzheimer's Disease: Strength-based Assessment and Activities. Austin, TX: Pro-Ed. Bourgeois, M. (2000). [Review of the book Enhancing the quality of life in advanced dementia]. Educational Gerontology, 26, 301-303. Palmer, C., Adams, S., Bourgeois, M., Durrant, J., & Rossi, M. (1999). Reduction in caregiver-identified problem behaviors in patients with Alzheimer Disease post hearing-aid fitting. Journal of Speech, Language, Hearing Research, 42, 312-328. Irvine, B., & Bourgeois, M. (1999). Working with Dementia: Communication Tools for Professional Caregivers. CD-Rom and Videotape Inservice training programs available from ORCAS, Oregon Center for Applied Science, Inc., Eugene, OR. Hickey, E., & Bourgeois, M. (1999). Derailing Communication Breakdown. Responses to an Aging Florida, 24-26. Palmer, C., Adams, S., Durrant, J., Bourgeois, M., & Rossi, M. (1998). Managing hearing loss in a patient with Alzheimer Disease. Journal of the Academy of Audiology, 9, 275-284. Johnson, K., & Bourgeois, M. (1998). Language intervention program for patients with dementia attending a respite program. Special Interest Division 2: Neurophysiology and Neurogenic Speech and Language Disorders, 8, 11-16. Bourgeois, M. (1998). Functional outcomes assessment of adults with dementia. In C. M. Frattali (Ed.), Seminars in Speech and Language, 19, 261-279. Adamovich, B., Tompkins, C., & Bourgeois, M. (1998). Outcome measurement of cognitive-communication disorders. In C.M. Frattali (Ed.), Outcomes measurement in Speech-Language Pathology (pp. 292-320). New York, N.Y.: Thieme. Bourgeois, M., Burgio, L., Schulz, R., Beach, S., & Palmer, B. (1997). Modifying repetitive verbalization of community dwelling patients with AD. The Gerontologist, 37, 30-39. Bourgeois, M. (1997). My Book of Memories: A Workbook to Aid Individuals with Impairments of Memory. Gaylord, MI: Northern Speech Services, Inc. Bourgeois, M., Beach, S., Schulz, R., & Burgio, L. (1996). When primary and secondary caregivers disagree: Predictors and psychosocial consequences. Psychology and Aging, 11, 527-537. Bourgeois, M., & Mason, L. A. (1996). Memory wallet intervention in an adult day care setting. Behavioral Interventions: Theory and Practice in Residential and Community-based Clinical Programs, 11, 3-18. Bourgeois, M., Schulz, R., & Burgio, L. (1996). Interventions for caregivers of patients with Alzheimer's Disease: A review and analysis of content, process, and outcomes. International Journal of Aging and Human Development, 43, 35-92. Bourgeois, M. (1996). Families caring for elders at home: Caregiver Training. In B. Shadden & M. A. Toner (Eds.), Communication and Aging: For Clinicians by Clinicians (pp. 227-249). Austin, TX: Pro-ed. |
