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My brother Torn has a frontal lobe dementia, diagnosed as Pick's disease, though I am doubtful. His progress seems similar to that of 'Brenda' described in Vol.4, Issue 3. 

Tom is 60 now and has never been married. He is managing, just, in his own home, 3-4 miles away and is still driving, though his licence is under review. Language comprehension was the first and still the most serious difficulty. This was not picked up in the early stages being masked by deafness due to tinnitus. 

He is still pretty good on regular activities, shopping, meals, caring for the cat, driving, seeing to his finances etc. But things that never did hold much interest for him… cleaning, clothes renewal, changing sheets etc. are now never done unless I chivvy, and enormous reluctance is manifest. 

I have to wear two hats:
1) keeping Tom occupied and cheerful- I try to see he does not have two empty days running; we meet for lunch, walks etc.
2) Then there is the bullying hat, giving constant reminders of things he should do; hoping he will let me engage a cleaning lady (he won't) or at least let me do a little cleaning (he will sometimes), or throw away clothes with holes in (almost never). I am never quite sure what I will find when I go into his house. Just lately the problem has been the cat, which has stopped using its litter tray. You can imagine the rest! Tom finds this amusing. 

I have to be very careful, Tom's trust in me is vital, both now and in the future. He will sometimes say. "I don' t come and clean your kitchen, I don' t see why you have to interfere in mine" This is a perfectly reasonable position to take, of course. I just tell him he is the one with the problems not me yet! He just laughs. There is very little self-awareness. He does complain about his bad memory; by which he means mainly his word-finding difficulties which are enormous now, but he does not relate this to any of his other problems. 

Conversation is extremely difficult. On the telephone, which we often are, it's OK, if I let him make the running. If he is in our house with several other people he makes no attempt to follow the conversation, but will cut right across with something he wants to say. 

He very much misses the holidays he used to take nearly every year in California, staying with friends. I do not think he would be welcome now, personal hygiene and table manners are beginning to fail, and this is an area where I really do not know what to do. People living alone often become slipshod in these ways, even without a brain disorder. 

On the plus side, he shows no embarrassment whatever about his difficulties. 'Can' t understand a word you are saying', he declares loudly and cheerfully in shops etc. He seems happy enough when with people but I suspect becomes very depressed when alone. 

What next, Tom is not yet ready for institutional care by a long chalk. Living with me is not on offer - other family commitments, but I would like him to move to a small flat much nearer that I could keep cleaned and organised for him. He won' t hear of it now, but if his driving licence is withdrawn, then perhaps he might. 

I would love to hear from anyone with a relative in a similar situation. 

Angela Docker

Communication

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

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. 

John	How lovely to see you, beautiful lady.
Me	(Thinking if only….)  I like to come, you’re looking well. From then on there is an element of guesswork
John	Where is the milk?  (He means car).
Me	It’s on the road, outside the gate.
John	When are you going?
Me	At 4 O’clock, your tea time.
John	When are you going?
Me	Quite soon, but I’d like to stay and talk for a while.
John	I’m going up there.  (Leaves me quickly to walk round the garden.  I find him him, or wait for him to return).
John	It’s nice here.
Me	It’s lovely.  You really like it don’t you?
John	Meals are good, free.
Me	(Thinking - you don’t know the cost of your care). Good, you’re lucky.
John	Are you going now?

Any of John’s remarks could be repeated several rtimes more.  I might attempt to talk about the family or the past, to no avail.  He appreciates a smile or an affectionate or friendly gesture.  He likes to give me (and anyone else) a kiss. 

What can be gained from these visits which never show any  progression?  From John’s point of view he can show pleasure when I or our children appear.  He can communicate by words and above all demeanour that he is at peace and happy.  He can fulfill his need to check and recheck what is happening next  John can express “nice and “I want”.  He appears to be quite satisfied with our exchanges. From my point of view I can use my knowledge of John and his speech patterns to interpret what he is saying.  I am sometimes nonplussed.  Much of what I learn is inferred rather than stated.  I gather that although glad to see me he does not miss me between visits.  I deduce that he needs assurance that this disruption of his routine will soon end.  I can also see that his wants, company, affection, food, comfort, and relative freedom are being met and that he does not experience sadness and nostalgia. 

At this level of communication we are maintaining a tenuous link.  He forgets my name but not that I am his wife.  I shall never learn more from him, but we both gain a measure of reassurance.  It is surely fortunate for John that his level of insight, awareness and perception of his needs have declined alongside his reduction of language skills.  I feel deeply for anyone who has to deal with the unhappiness and frustration caused when this is not the case. 

Angela Rowlands.

Tribute to Mum

She appeared fit and healthy until five years ago. It was at this time that I noticed her behaviour change. She began to leave the gas on after she had finished cooking, and on one occasion left her handbag in the front garden. Her driving became very erratic and she had numerous accidents. 

In 1994 I decided we must visit her doctor. She took one look at mum and said she thought she was suffering from dementia. I remember saying that was impossible, as mum was only 57, and dementia was something 'old' people suffered from. She referred her to a consultant neurologist in Manchester who did various tests and confirmed mum had Pick's disease. I had never heard of it and found it very difficult to get any information on the condition. 

In 1995 she had to be admitted into residential care. It was a dual registered home, rest home on one side, nursing home on the other. It wasn't long before she had to transfer from the rest home side to the nursing home as her condition deteriorated. 

The last eight months have been very difficult, as she didn't recognise anyone. She lost the ability to talk and to swallow, so everything had to be liquidised in order for her to get some nourishment. Her weight plummeted and her general health deteriorated rapidly. 

On August 23rd 1999 she died peacefully in her sleep aged 62 years. 

Susan Grattan. 

Younger Person’s Network

The younger persons network is for anyone affected by any type of dementia that begins before the age of 65. People have told us how it would help if they could speak to someone in the same circumstances. Others have said that they would like to contact someone who also shares another important aspect of their lives such as religion, culture or sexual orientation. The network aims to match younger people with dementia, their carers, families and friends with those in similar situations. 
 
Almost all dementia services are designed for older people yet younger people may have very different needs. Younger people with dementia are more likely to have dependent children and heavy financial commitments, for example, or be in work at the time of diagnosis. It can be hard for them to find appropriate services and people who understand their individual needs. We hope that this network of contacts will strengthen the existing support offered by the Society to those affected by early onset dementia. The network will be co-ordinated by the Society's Younger People with Dementia Project. For more information and a copy of the network leaflet contact Laura Baker or Denise Williams on 0171 306 0606, or call the Alzheimer's Helpline on 0845 300 0336. 

Laura Baker 

Carol Jennings

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