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Communication

When you think of it life is all about communication.  We are always thinking of new and quicker ways of communicating, computers for a start.  Even our newsletters are a an example, written on computers, displayed on the web, transferred by disc to our dear printing firm Phoenix Photo Litho in Leicester who are so good to us.  But loss of communication causes a lot of the problems in Pick’s disease and Frontal Lobe Dementia as well as in all the other dementia.  Naming is often an early problem as well as misuse of verbs. Loss of facial expression can cause carers and family a lot of sadness, it is amazing how much we depend on other ways of communicating apart from just words. Friendly gestures are sometimes lost and a few people with dementia do not like to be touched and actively recoil from friendly gestures.  Lack of emotion and becoming self centered also cause a break down in communication. Inappropriate use of words can cause distress as well as loss of inhibitions. Also sexual intercourse may be affected. Loss of communication affects the person with dementia, the spouse or carer, all friends and family as well as strangers. 

So what can we do?  Referral to a speech therapist may be offered. Speaking slowly in short sentences and always facing the sufferer is a good start. Not giving options is a help, “would you like tea or coffee” can be reduced to “would you like a cup of coffee” this is less confusing.  Also speaking at the same level as the sufferer can help even if this does mean bending down! Interpreting the words used can become a definite skill.  Teaching signs such as thumbs up or down can sometimes help but realising “yes” can mean “no” is important.  Sufferers often understand sentences written down better than the spoken word. However writing things down may become an obsession and wordbooks can help but can lead to even more worry and frustration. Friendly gestures may be acceptable and this needs to be explored, as we all know every sufferer of Frontotemporal Dementia is different. Encouraging the sufferer to retain and practise words can help.  Every carer will have special ways of communicating and if anyone would like to write in and give us their useful tips we would be more than happy to include them in another newsletter. I know that some carers are going to explore computer packages and we will hopefully hear about this soon. 

Penelope Roques

Where is the Milk? One carer’s experience of communication in Pick’s Disease.

Following a request to write about this, I am having a go!  In our case, communication difficulties were subordinate to personality changes and behavioural problems.  Other people will have different experiences, problems and solutions.  My husband, John, showed slight changes in the 80’s.  By 1988, I was certain that something was amiss.  In 1995, aged 64, he was finally diagnosed on clinical grounds as almost certainly suffering from Pick’s disease. 

Pre-Pick’s.  John would have fun inventing alternative names for people and objects and would be amused to hear colleagues adopt these terms.  Idiosyncratic, but no more.  He was articulate - especially with regards to his interests. 

I am aware that we had a deeper, important communication brought about by our shared love of the countryside and music.  It contributed to our growing empathy, and words were not required.  This “unspoken” but real form of communication vanished in the early stage of the disease. 

Early Language Loss.  Throughout the 80’s John would make very many more word substitutions and I became uneasy.  John thought that I was fussing needlessly.  The names of objects began to elude him, e.g. knife, sock, comb.  He discovered that the word device was really useful.  For instance, unable to recall the word for bucket he would ask for the device for putting water in.  His attempts became more and more convoluted and this ruse became less and less successful.  “You know, the device for getting - no, sitting - oh, well, you know….”  Very often I could guess from the context what he meant but this became increasingly difficult.  I took to waiting quietly in case the word came, or I would suggest a few possible words.  I hoped to help him retain and use as much vocabulary as possible.  Soon this ceased to work and we would reach an impasse.  Rather than let him face failure I would divert our talk to an area where I knew he would succeed. 

Communication between us was mostly adequate for many practical purposes.  John was unaware of his loss and did not appear to feel frustration.  By now his behavioural problems were more pronounced.  I feel that his increased agitation was connected with these and their consequences. 

Increased Loss of Language.  I now had to speak more slowly and distinctly using restricted range of vocabulary and forms of expression.  John was interested only in a limited number of topics.  He would mostly make simple comments about the weather, repeating himself very often.  He did not seem to take in information and explanations.  Understanding and memory varied from day to day. 

Now, an incorrect word would often be given at random. Yoghurt, the most frequent to crop up, could mean anything from a shoe to a TV set and tea could be a door or a dog.  Conversation between us was severely reduced in amount and content.  I feel that the amount of communication we did have was possible only because I was with John all the time as his language skills deteriorated.  Our children remained close but some friends and family members stayed away - the change was too great for them.  John did not feel the loss. 

Previously quiet, correct and a little shy, John would know make indiscriminate overtures.  He was very persistent in relating the same three banal jokes.  Long-suffering neighbours would stoically hear him out for as long as they could stand it.  He would approach total strangers, wanting to be friendly but lacking the vocabulary and social awareness to act in an appropriate manner.  When addressed as “beautiful” people could be affronted or alarmed.  His behavioural problems seemed to be compounded by his diminished language skills. 

The last nine months.   The need for 24 hour care coupled with the extreme restlessness and behavioural problems finally resulted in John entering a home in October 98.  He had seen the home previously and explored his own room.  He seemed to understand that he would be staying for a while but the communication gap was so great that he could not understand more than that and although my head told me what was appropriate to say, my heart wanted to say so much more. Happily the care provided is exactly what he needs, without the need for tranquillisers or sedatives.  I notice how the body language and facial expressions of the staff back up what they want to say. 

How do we communicate now?  John’s language skills have continued to decline.  Very occasionally he is almost mute.  Usually however, our conversation is identical from visit to visit.