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The
Pick's Disease Support Group Newsletter


For carers of frontotemporal dementia: Pick's Disease, Frontal Lobe Degeneration, Dementia with Lewy Bodies, Corticobasal Degeneration and Alcohol Related Dementia
 



November 2003 Volume 9 Issue 4

Contents

Incontinence, Colin Binnie
Volunteers Wanted
AGM 2004
Moving On - Carol Jennings
Anglo French Link - Penelope Roques
Forthcoming Events
Contact Details

Incontinence

Incontinence is distressing, embarrassing and a considerable burden for carers and occurs sooner or later for several reasons:

Causes
1. Lack of foresight.
The Duke of Wellington is credited with the remark that “A man should piss when he can, not when he has to”. Most adults may not consider the matter in such colourful terms but routinely relieve themselves in anticipation of any situation in which it may not be convenient to get to a lavatory: before going for a walk, taking their place in a cinema etc. A person with frontal lobe damage shows a loss of forward planning, affecting even such simple matters as emptying the bladder at a convenient time; consequently they are liable to be caught short.

2. Apathy
The general apathy affecting many people with Pick’s disease may cause them to ignore the sensation that they need to go to the lavatory, leading to incontinence, particularly at night.

3. Use of inappropriate places as lavatory.
Damage to both temporal lobes of the brain may lead to the so called ‘Kluver-Bucy syndrome’, one feature of which is an inability to recognise the appropriate use of objects in the environment. The sufferer may, for instance, try to eat things that are inedible and, similarly, may use a wardrobe as a lavatory or a wastepaper basket as a WC.

4. General debility.
In the late stages of any dementing disease the patient becomes incapable of doing anything for themselves, including attending to their sanitary needs

5. Specific urinary problems.
Pick’s disease occurs generally in an ageing population and it is important not to overlook specific urological problems unrelating to dementia. Middle aged and elderly men may have prostatic problems, and women, inconitnence related to coughing, stress, or vaginal prolapse. Most of the literature on incontinence in dementia focuses on these incidental physical causes, rightly so, as specialist advice may be necessary to ensure that these treatable conditions are not overlooked.

Management
The first two of the above may to some extent be managed by insisting that the patient relieves themselves regularly and before going out or going to bed, and by limiting drinks in the evening. Excessive fluid restriction is unhelpful, however, leading to concentrated urine and urgency of micturition (urination).

Specific problems affecting the urinary system require specialist medical and nursing advice. Assessment is difficult as diagnosis depends to a considerable extent on accurate reporting of the symptoms, of which the patient may be incapable. Specialised continence clinics may be orientated chiefly towards the needs of those who are aware of their problem and eager to co-operate in finding a solution.

Continence aids are readily available from the larger retail chemists and supermarkets or, more conveniently and at lower prices over the Internet. Several well-known manufacturers of sanitary towels have Internet sites offering a range of aids. Unfortunately, the lack of insight typical of Pick’s disease may cause the sufferer to refuse to wear incontinence pads, waterproof knickers etc. At the least, a washable mattress protector and disposable draw-sheets may reduce the soiling or wetting of bed linen. Re-usable absorbent knickers or underpants resemble conventional garments and may be more readily accepted by the patient than disposable pads – but their use creates a lot of laundry.

Without the co-operation of the patient, there is no solution to urinary incontinence by day, which may seriously limit and eventually put an end to, social activity outside the home.

Faecal incontinence, if it amounts to more than light soiling of underwear, presents an even more serious problem. Patients may appear indifferent to the soiling of their persons and of the surroundings, or may panic and try ineffectively to remove contaminated clothing and clean themselves, often making matters worse.

The difficulties of cleaning the patient, their clothes and the surroundings can be distressing to all concerned and may be manageable only with continuous nursing care. Incontinence is often a major factor leading to admission to a nursing home, but it is important that any physical, urological causes should be diagnosed, as these are treatable.

Professor Colin Binnie


Volunteers wanted for study of pads and pants for continence problems

University College London and Southampton University have joined forces to investigate the quality, value and performance of absorbent products for people with continence problems. Now they are looking for people who use these products to help them with their study.

A great many people in the UK have continence problems caused by many different conditions. But hardly any work has been done to compare the performance of products available for people with the condition.

This study aims to change that. By gathering and publishing the evidence they collect from volunteers, the universities’ goal is to make product choice easier for both the public and healthcare professionals.

If you use pads on a regular basis, you can join this NHS funded study. Volunteers are being sought from all over the UK, they will be sent a range of pads and pants (free of charge) and asked to report back on how well they worked. All details would be kept strictly confidential.

If you want to find out more about the free trial contact Nick or Sinead on 020 7288 5150 Email: qvpproject-med@ucl.ac.uk or write (envelope provided)


AGM 2004

Farmer’s Club, Whitehall London

You will see from the agenda above that we have a wonderful array of speakers for this event. For more information and to place reservations please phone Penelope. Price £25 including lunch.

PICK’S DISEASE SUPPORT GROUP
ANNUAL GENERAL MEETING - 10th March 2004.
09.30-10.30 Annual General Meeting
10.30-11.00 Coffee
11.00-11.30 Ethical issues in dementia
Katy Judd. Clinical Nurse Specialist. Dementia Research Unit, National Hospital for Neurology and Neurosurgery, Queen Square, London
11.30-12.15 What can a brain scan tell us?
Jenny Whitwell B.A. Clinical Research Fellow, Dementia Research Unit.
12.15-13.15 Questions
Dr. Nick Fox, MRC Clinician Scientist, Dementia Research Unit
13.15-14.15 Lunch
14.15-15.15 Helping People who have difficulty deciding for themselves
Dr. Jonathan Waite
15.15-15.45 Where to turn
Lynne Ramsay PDSG
15.45-16.15 Diagnosis Impossible
Mary Dawber, Carer, PDSG

Moving On

I have recently carried out a survey to evaluate what we are doing to support carers in the Trent Region. Our regions are very large – Trent includes Nottinghamshire, Leicestershire, Derbyshire, Lincolnshire and South Yorkshire. Of course it’s hard to accommodate everyone’s needs – but we can try to be more inclusive. Sometimes it’s good to take stock and see what you are doing and if improvements can be made. The results of the questionnaire have been encour aging and have also pointed us to ways we can improve.

It’s heartening to read how carers have appreciated getting together. They say meetings have helped them to:

  • hear of others problems and compare them with their own

  • listen and realise that what they experience at home are characteristics of the dementia

  • meet with others and have updates on research, medication and relevant conferences

  • share experiences, worries, feelings – make friendships and have a few hours ‘off duty’

 “Sometimes I can’t attend but I’m pleased to know where I can turn for support and advice”.

Distance does make it impossible for many carers to be part of those gatherings. One overwhelming point being made in our questionnaire was the need for something local. That’s what we are now working towards.

The Nottingham meetings will continue but I will be setting up meetings for those in Leicestershire at my home. I’m also investigating ways of working with others in Lincolnshire and South Yorkshire to provide groups there.

On 21st October regional contacts will be meeting together to see how we can take our work forward. That could be by repeating similar evaluations in other regions – but that takes time to organise and a lot spent on postage. You can really help us by letting us know what you want. If you would like to meet with others in your area let your regional contact know. If the need is there we want to help.

The PDSG is raising awareness and expanding – your involvement can really help us to make it even more relevant and supportive.

Views to your regional cont act or Carol

Carol Jennings


Anglo-French Link November 22nd 2003

Sharonne O’Leary and Jennie Mackie applied for and got a Millennium Award to organise an official Anglo-French Group.

The FTD Group from Lille will be coming over to London by Eurostar and we will meet them at the Eurostar arrivals area at Waterloo station at 10.20. We will then go on the London Eye, have lunch and exchange ideas. We then plan a river trip for the afternoon.

Everyone is welcome but particularly people with Pick’s Disease. All behaviours are accepted by our group!

To book and for further details please phone Penelope on 01297445488.

PS We will be going to Lille in the Spring.

Penelope Roques


Forthcoming Events 
 
London: The Old Boardroom, National Hospital for Neurology and Neurosurgery, 
 Queen Square, London WC1N 3BG 
 11.30-13.00 Invited speaker 
 13.00-14.00 Lunch. 
 14.00-16.00 Your Own Experiences.

Dates :-  

  • 3rd December 2003

North West Meetings: Please contact David Hunter - 01695 624 781  or david@pdsg.org.uk

Nottingham: Meetings are from 7.30pm at "The Goose at Gamston, Gamston, Nottingham

Dates :- 

  • 27th January 2004 (please note new date & Venue)

Research for Television  
 
Channel 5 are preparing a series on unusual medical conditions. They want to include Pick’s and feature, ‘in a very sensitive and sympathetic way’, the lives of patients. They would also like to show how the doctor involved with the patient manages or treats the condition over a period of time. If you feel you could be involved then you can find out more from:

Emma Goddard, Assistant Producer. Tel: 01865 427301 Email: emma@landmarkfilms.com


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Contact Details

Carol Jennings, Counsellor
8 Brooksby Close
Oadby
Leicester
LE2 5AB
Tel : 0116 271 1414
carol@pdsg.org.uk
Penelope Roques, Secretary
3 Fairfield Park,
Lyme Regis
DT7 3DS

Tel: 01297 445488
penelope@pdsg.org.uk

Regional Contacts

  • Scotland: Mrs. Eliza Simmonds 01764 661136
  • Cleveland, Cumbria, County Durham, Northumberland and Tyne and Wear: Ms Judith Watters 01670 367241
  • Humberside, North Yorkshire and West Yorkshire: Rev. Ronald Carter 01904 610237
  • Derbyshire, Leicestershire, Lincolnshire, Nottinghamshire and South Yorkshire: Ms Janet Carpenter 0116 2392913
  • Cheshire, Isle of Man, Lancashire, Manchester and Liverpool: Mr. David Hunter (C