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Around the age of 54 -- 56 years, we (my family and myself) noticed that my husband was losing his ability to think things through logically, he became irrational, logical discussions were impossible. He experienced mood changes unrelated to external events, demonstrated outbursts of irrational rage and became fearful and anxious for no apparent reason. He lacked insight into his behaviour and at times demonstrated quite bizarre behaviour i.e. whilst a passenger in a car on the middle lane of a motorway he opened the door and attempted to get out of the moving car. He could not understand what all the fuss was about!

He became unable to handle responsibilities at work (he drove a powerful, technical vehicle for Manchester Corporation), he would be told to go to a certain place, set out, then be unable to recall where he had been told to go, became unable to handle any paperwork and had periods when he could not understand no matter how many times things were explained. He appeared to demonstrate a gradual failure of rational thinking had bizarre outbursts of irrational rage and became very anxious with extreme panic attacks. He gave up work at the age of 58 years, being unable to function and becoming increasingly dependent. He has difficulty finding the right word at times and is very easily distracted.

He changed from a quiet, caring, reserved man into an extroverted, disinhibited and tactless man. He is frequently tactless and rude, displaying disinhibited behaviour in public and to strangers. I have been asked 'Is he drunk?'. He becomes aggressive very easily. He will eat a whole cake at once and when questioned he will say he has only had one piece! He regresses into very childlike dependant behaviour but the most unmanageable problem is his disinhibited behaviour towards females.

In May 1997 (aged 58) he became extremely aggressive, kicking the furniture, and me threatening to kill both himself and me. The G.P. admitted him to Macclesfield Hospital where a consultant psychiatrist discharged him after 5 days describing him as 'manipulative behaviour'. In the medical notes he had written that he doubted the truth of my statements and tensions and difficulties within the marriage were responsible for the aggressiveness!

Ken continued to deteriorate and in order to speed things up my GP asked if we could afford to pay privately to see a different psychiatrist, which I agreed to do. In December 97 Ken saw another consultant psychiatrist at Macclesfield who asked Prof. A. Burns for an opinion. Ken had a SPECT scan, which showed' deficits in blood flow in the frontal and parieto-temporal areas'. Thus the diagnosis of an organic problem was given to me, with a poor prognosis. We were treated well but due to a reorganisation we had to change to a different consultant – the clinical director of psychiatry. He appeared to disbelieve all the problems I brought to the consultations. Ken had hit me whilst I was driving the car and I was very concerned about both our safety, and even though Ken acknowledged he had 'lost his temper in the car because he was frightened by the ‘surrounding traffic', the problems were dismissed. I made a formal complaint and asked to change consultant.

In Dec. 2000, we had a horrendous meeting in response to my complaint, whereby the clinical director of psychiatry told me Ken was to be discharged from all services, including the Day Centre which Ken loved, as in his opinion there was no evidence of dementia or any psychiatric illness! I obtained the medical notes to try and find an explanation. I was horrified. Written there was' Mrs Dawber has some investment in overstating symptoms she feels support a psychiatric diagnosis: - she takes him out in a wheelchair due to an apparent heart condition'. Ken had open-heart surgery last year (mitral valve replacement): - this consultant also denied he had cardiac disease! When I asked him what investment I could possibly have in overstating symptoms, the written reply was for financial gain!

For two years Ken has had no local consultant psychiatric cover: - no services except the two days day care reinstated in April which my M.P. has fought for. Ken saw Prof. Neary last Oct., who gave us the diagnosis of FTD, based on Ken's physical signs, marked problems in attention tasks and the very abnormal SPECT scan. (The scan of Oct.2001 compared with the one in 1997 showed marked deterioration). I asked Prof. Neary if there was any doubt about the SPECT scan and he reiterated 'a very abnormal scan'. I also asked the Prof. if he could explain how Ken appeared to be so well behaved at the Day Centre that they did not believe the problems both my neighbours and myself were trying to bring to their attention. Prof. Neary replied that this was quite usual: - a daycentre has a structured routine and it is common to find behaviour differs at home or in the Community.

We have an appointment with Prof. Neary on 26 June and I am extremely concerned about this situation. I cannot make anyone at Macclesfield believe a word I say. If I did not want to be with my husband I would just go - I would not need to resort to devious methods!

Since writing this article Prof. Neary has reiterated that Ken has Frontotemporal dementia with an orbital variant. The neuro-psychological test consistently shows a lack of executive function and the SPECT scan which in 1998 showed ‘some abnormalities’ in December 2001 showed ‘widespread abnormalities’.

I am understandably very worried about the future both in terms of care and prognosis. These uncertainties are made much worse by the fact that the consultants in Macclesfield will not accept the diagnosis and want Ken to have further tests – which I do not think he is up to. Will they ever accept the diagnosis and be prepared to set up some kind of support for me?

Alors!

We are going to France for the day on November 16th by Eurostar. All welcome particularly people with dementia. We have been before and had a lovely time. If we leave Waterloo at 08.30 we can be in Lille by 11.30. We will meet up with our friends, the Frontotemporale Group in Lille, have a good lunch, do a spot of tourism but above all talk. It doesn’t matter if you don’t speak French, some of us can, some of us speak fluent Franglais (me) and many of their group speak English. The journey gives us time to exchange views, circumstances, problems and laughs. The return fare will be about 60 pounds but if people let me know in advance I can get a group ticket which would be cheaper. I promise it is well worth the money. Please contact me on 01297 445488

We much enjoyed their visit to London on 28th May. We met up at Waterloo and then went to the British Museum. I worked next door for years so naturally it is the first time I have been; it was such a good suggestion by Dr. Florence Lebert! It was an ideal opportunity as people could explore and admire what they wanted or sit drinking coffee (me again). It was lovely to see them and exchange views and news. After lunch Dick Lingham showed the album photos from previous visits, which was fun. We are very pleased to have contact with Dr Lebert and her group and thank her and Madame Sorel enormously for organising it. We have since heard that their group enjoyed their visit.

Dr. Lebert has written a superb book on Pick’s disease with photographs by Carl Cordonnier. Anne Crowther is translating it into English and we will then have to see how to get it printed.

Penelope Roques

Rick Fenton

The Pick’s Disease Support Group recommends the ‘MedicAlert’ range of products for situations such as these. You might also consider carrying one of the PDSG fact sheets. http://www.medicalert.co.uk/