Contents

What are the Symptoms? 
The frontal lobes of the brain are where we plan and monitor performance and where we control our behavioural and emotional responses.  Damage to the frontal lobes may cause a variety of symptoms that differ greatly from one individual to another.  There are however a common “core” of symptoms and some or all of these may be present at different stages of the illness. The temporal lobes are responsible for our speech and comprehension of language.  Damage to these areas of the brain may cause speech loss. 

Personality Change 
The person may lose their inhibitions and becomes extrovert or may become withdrawn. They may talk to strangers, particularly children, make inappropriate remarks in public, and be rude or impatient.  They sometimes appear selfish which is caused by a loss of mental flexibility and being unable to see someone else’s point of view.  The person may become aggressive which may be quite out of character. The development of routines and behaviour - for example the person may develop compulsory walking routines or become obsession in certain behaviours. Their behaviour is often described as childlike. Changes in sexual behaviour may be linked to general loss of inhibition or to apathy. 

Speech problems 
These are common and range from reduction in the quantity or quality of speech in some to total loss of speech in others. Understanding speech and writing is also affected. 

Changes in eating habits 
Overeating, changes in dietary preferences, particularly for sweet foods, often cause weight gain. Excessive alcohol intake may occur. In the later stages sufferers may compulsively put objects in their mouths. Swallowing may become difficult with patients choking on food. 

Attention 
Difficulty sustaining a line of thought or maintaining a conversation for any length of time often occurs.  People with Pick’s disease are often easily distracted. 

In the early stages of the disease the person usually remains aware of time and is able to recognise people and faces unlike the usual presentation of Alzheimer’s disease.  However, failure to recognise faces and using objects wrongly sometimes occurs.  Mathematical skills are usually relatively well preserved. 

Life Span of the illness 
Pick’s Disease may be a rapidly progressive illness, it may last between 2 to 10 years the mean length of illness being 7 years. 

Who can get Pick’s Disease. 
Anybody can get Pick’s disease, and males and females are equally affected. 

Management 
There are no drugs so far which affect the progression of the disease.  The drugs that are designed for the treatment of Alzheimer’s disease are contraindicated in frontotemporal dementia as they may increase aggression.  Management lies in coping strategies such as side stepping issues rather than being confrontational and working round obsessions rather than trying to change them.  Professionals such as Speech Therapists and Occupational Therapists may be helpful.  A serious problem is boredom and carers have found such diverse new hobbies as art, music, rug making, walking and jigsaw puzzles helpful. 

Why is it called Pick’s Disease? 
In 1892 Arnold Pick described a man who had presented in life with progressive loss of speech and dementia. After death the patient’s brain was found to be atrophied  (shrunken, caused by brain cells dying) in localised areas as opposed to Alzheimer’s disease where the atrophy is more general. In Pick’s disease the frontal and temporal lobes are most affected.  In addition swollen brain cells (Pick cells) together with the presence of abnormal staining within cells (Pick bodies) are the hallmark of this disease.

The Latest PDSG Meeting 

Background 
Patients often become ill during their forties and earlier.  Acceptance that there is a problem and then obtaining a diagnosis is also often protracted, as onset can be insidious.  Early symptoms of this disease include impaired judgement, decision making, and cognitive ability.  Hence, by the time that a diagnosis is obtained all of these symptoms can be significant.  At the same time the patient typically presents as extremely plausible to society and having impaired insight are themselves convinced  there is little if anything wrong with them.  Sometimes this can be accompanied by a Jeckyll and Hyde type of behaviour between that encountered by the family and that experienced by society at large. 

In addition the patient is also often the main breadwinner for a family. With this disease, all family members are affected and all need support and protection. Typically relationship difficulties are experienced, largely due to the changing personality of the patient, regardless of the state of the relationship prior to onset of the disease. 

Whilst accepting that prior to any confirmed diagnosis it would be inappropriate to facilitate any action, post diagnosis further assistance is required. 

Issues 
1) The family assets need to be protected
Whilst carers are advised to obtain enduring powers of attorney, often the patient’s judgement is to impaired for them to agree.  Typically separation or divorce is recommended. Some carers had followed this advice believing it to be the only way of trying to protect a home for their children.  However, this then resulted in lack of information from the medical services as they were now separated and did not achieve protection.  Patients at this stage are treated as completely normal by the law, even though they may be cashing large sums of money and then losing or hiding it and then forgetting where they put it etc.  The patients themselves need assistance for their own sake as well as that of the family. Some families have lost their homes and incurred huge impacts on their way of life, caused by the mental illness of the patient and the lack of instant protection at least post confirmed diagnosis. 

2) Lack of services 
Specialised services for early onset dementia are often non-existent.  Patients are typically young and mobile.  Because of the lack of services, frequently the carer becomes a patient and is typically offered counselling and anti-depressants.  This is unacceptable.  The carer typically has children to look after as well as the patient, in some cases the children are also becoming patients due to the difficult nature of living with someone with fronto temporal dementia.  If patients are to remain in the community then services should be provided.  These should include sitting services within the patient’s home, active flexible day care, leading to residential care. Services need to be integrated.  It is a difficult decision for anyone to make to decide to move into fulltime care.  It is even more difficult with this disease which causes impaired decision making, often a lack of trust and an inability to adapt to change.  It seemed far less traumatic 
where patients had attended day centres and then started to stay for a night and gradually transferred to fulltime care at the same location. 

3) Mental Health Legislation 
Fronto temporal dementia is an organic brain disease for which there is not currently any treatment.  Hence, carers are often told that the mental health act cannot be applied, even when violent behaviour has been caused by the illness.  In fact because the patient can become more confused in unfamiliar surroundings, families have been asked to live elsewhere as the patient was deemed too dangerous to live with. During this period the patient was left in their own home. Hence the patients’ problems were not addressed but the family asked to find alternative accommodation. 

Even if the services existed, whether or not the patient attends a day centre or not is a decision entirely for the patient to make on a daily basis.  There is no method of enforcing attendance.  As the carer often has children to provide for as well as look after the patient, they are often required to work.  Trying to perform a professional job concurrent to not knowing whether the patient will attend a day centre daily and hence be safe is impossible.  Hence the family circumstances are further affected. 

The professionals seem to believe that separation or divorce is the only answer and many people are advised to take this route as there appears to be no other.  This obviously is one answer but seems unacceptable that this has to be the only solution when the problems are caused by mental illness and in particular usually children would prefer to see their parent treated with dignity.

We had a splendid long weekend break in Hastings.  We were 18 in total, which included three generations of PDSG members – ok Joseph isn’t a year old yet. We all enjoyed ourselves enormously.  We had three eating venues, one with children, one with alcohol and one with Michael!  If you would like to come on a break with us please contact Val Bywater or Lyn Goodfellow.  The next one will probably be in the autumn when we can negotiate good rates.  The break came to £50 per head that for 3 nights away and two people per chalet was really excellent value.  We had marvellous weather, which was a bonus.  The picnic at Kew is on the 23rd May and we will see what the weather can do.  Whatever we always have a good time. 

We thoroughly enjoyed entertaining the Frontotemporal Group from Lille. Several of the friends we made last year when we went there came so we made old and made new friends.  We all loved the bus tour round London and the bus company made life very easy for us by picking us up at the National and dropping us off at Waterloo.  Our thanks to Lyn Goodfellow for arranging it all for us.  We hope to go to France again next year so let me know if you would like to come. 

A 23-year-old language student, Vladimir Isaenko, from the Ukraine contacted me via the Internet. He is very interested in working with people with dementia. He would charge £50.00 a week plus full board and lodging and is willing to work very hard.  He was a cook in the navy and will do anything to help. I have a reference from his University. He will hopefully be here early June. Please contact me at my new address for further information. As his first project Vladimir is going to be busy helping me to decorate and garden. He works and I supervise!  There is a lot to do and many members of the PDSG have also agreed to help, all help gratefully received.

Time to let go? 

Kristi Huffman, Administrative Assistant, L.P.N.
Skagit Adult Day Center, USA. 

Regarding the AGM 

We were very grateful to the speakers, who came well prepared, and who took time and trouble with our questions, and it was indeed a privilege to be addressed by the supreme authority on pre-senile dementia, Professor Rossor. 

A very big thank you Penelope and her committee for giving us not only an informative day, but a very enjoyable one.  It served to renew that feeling that we do have support, and once in the group, we are not alone. 

Letter from Carole Ivey. 

Contact Details

Carol Jennings 8 Brooksby Close Oadby Leicester LE2 5AB Tel : 0116 271 1414 Fax : 0870 706 0958 carol@pdsg.org.uk	Penelope Roques as of May 31 2000 3 Fairfield Park, Lyme Regis DT7 3DS Tel: 01297 445488 penelope@pdsg.org.uk
David Hunter 16 Grove Road Upholland Lancashire WN8 0LM Tel : 01695 624 781 david@pdsg.org.uk	Clare Morris The Dementia Research Group The National Hospital for Neurology and Neurosurgery 8-11 Queen Square London WC1N 3BG Tel: 020 7829 8772 Fax: 020 7209 0182 candid@dementia.ion.ucl.ac.uk