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.