DT—Not Delirium Tremens

      Dementia.  Environmentally induced?  Hereditary?  Dietary?  Natural result of living longer?

      Dementia Together leaves those questions to others.  It believes that a person suffering from dementia has life to live and live happily. 

     To that end, you will hear and see the phrase “Contented Dementia.”  The organization reaches out to loved ones who are dealing with how to care for a person with dementia.  The staff has some ideas about how to care for that person that will be satisfying for both the patient and the care giver.

     Our tiptoe into the lake of experiences the organization has to offer was with a Memory Café.  Those are hour-and-a-half meetings with persons suffering with dementia and their caregivers, whether they are spouses, children, friends.  Memory Cafes are purely for entertainment and give everybody a happy time.

     Each meeting has a theme of some sort.  “Antiques” were the subject of our first visit.  Folks were invited to bring an antique for “show and tell.”  Some of the people did bring something to share.  It was in December, so the program included a mother and her two teenage daughters singing Christmas Carols and leading the group to sing along.

     A second meeting involved chocolates and European countries.  Again, we had songs to sing from some of the countries we “toured”, along with a chocolate from that country.  For every country, someone in the gathering had a memory of visiting that country to share.  That included a couple doing a polka, someone trying to use a hula hoop, and throwing Styrofoam airplanes through the hula hoop, to mention a few.  Audience participation is encouraged. 

      We have also participated in bowling—patients and caregivers bowl a line at no cost--and pool, also free to DT people.  All these activities bring folks going through the experience of dementia together.  It helps to know you are not walking the  pathway alone.

      There are support group meetings, too, some live, but many via ZOOM.  I am not much for ZOOM meetings, but I have attended two.  There were over 30 participants in both of these meetings.  Most of the meetings are in “breakout rooms”.  My room was full of husbands caring for afflicted wives, or in one case, a recently-deceased wife.  We covered the problems of handling medications, driving, or stopping the driving, and having in-home help. These meetings can be depressing, but I think helpful tips may outweigh the negative.

     In addition to the social aspect of DT gatherings, they offer classes on how best to care for your dementia-afflicted person.  A term you will hear when working with DT  staff is “SPECAL”, pronounced “Speckle.”

       When dealing with people with dementia, SPECAL has Three Golden Rules. 

Rule One, Don’t ask direct questions.      

Rule Two, Listen to the expert.

Rule Three, Don’t contradict.

     If you think following those rules is difficult, you are right.  When looking at a menu, how do you ask, “What would you like to eat?”  Making decisions is very difficult for “us”.  So, you say something like, “The Shrimp sounds good,” or, “Mmm, the liver and onions sound really great.”

     Then comes rule two, listen to the expert.  The dementia person is the expert that you must listen to.  While the shrimp might get a lukewarm response, the liver will likely get a great big “Ugh!”  You keep trying with suggestions until you get an enthusiastic response.

      When the person gets anxious or uncomfortable, you listen carefully to try to figure out what’s bothering her.  Try is the keyword for me.  Sometimes, what is being said makes no sense.

       And Rule Three, don’t contradict.  What!  How can you be married and not correct things that are obviously wrong?!  “No, you have NOT taken your pills!”  Woops. 

       Suggestions:  don’t disagree with a statement.  Try to figure out why the person would say that.  Agree, repeat what she said.  Apologize:  "I’m sorry that’s the case."  Align:  "join the club."  Or, attract attention to something better.

       Many of the rules seem counter intuitive, but folks promoting SPECAL, while still developing strategies, insist that these things can be done.  Like everything else in life, it takes practice. 

     I am just beginning to try to implement these strategies.  I find myself violating all three of the golden rules, but I continue to try.  I have only attended one of the meetings on SPECAL.  I am sure there is more help when I can get to other meetings.

     One useful idea I have tried has to do with large, noisy gatherings, such as family events.  The dementia person will be confused and frustrated by the noise of such a gathering.  The experience can lead the person to demonstrate “unacceptable behavior”. 

     The prevention:  be sure the dementia person has a one-on-one attendant at all times.  This job should be shared rather than falling on one person.  Likely candidates are children, grandchildren, siblings, or close friends.

     People ask how they can help.  The answer is simply sit down and have a conversation with that person.  Try to keep the three golden rules in mind, no direct questions and do not contradict.  Listen carefully and do your best to respond in a friendly way.  The attention will block out much of the noise and confusion and make the person feel a valued part of it all.   

     Finally, DT also provides training for those brave, dedicated souls who work in “memory care” institutions.  Many of those who attend DT meetings have loved ones in memory care.  Sharing DT ideas with staff at the institutions has worked well for them. 

      Until we find a cause or cure for dementia, Dementia Together provides a helping hand for those of us wandering in the wilderness.  If you have read this far, you have taken a first step in the adventure that Dementia Together tries to provide. 

     Welcome aboard!