Contents
Letter to the Editor
Dear Editor
The first sign of Tony’s illness was his intolerance to
noise. He said it broke his concentration. That was in 1989 at the age
of 56. He slowly deteriorated showing all the signs I read about in your
Newsletters. The one that is the most distressing to us all is his shouting.
"Charming! Charming" he would shout at the top of his
voice as we saw to his daily needs. The noise would bounce off the glass
lampshades wherever he was.
He is now in a nursing home where he is still noisy. Has
anyone else had this experience of "shouting"?
Yours sincerely
Barbara McGuiness
17 Shannon Close
Willaston
Nantwich
Cheshire
CW5 6QG.
Another letter to the PDSG - has any reader any views
they could feed back to the PDSG?
My brother has recently been diagnosed with, most probably
Pick’s disease. He is at present living independently but is beginning
to need more support than I can achieve with three get-togethers every
week
I would be grateful for any suggestions of where I might
begin to advertise for someone to share his home and supply companionship
possibly as a paid position.
Very difficult to find such a person, I know but any suggestions
would be very welcome, along with any other information you think I should
have.
EATING
At the last meeting of the PDSG in London we had a very interesting
discussion on changes in eating patterns seen in FLD and Pick’s disease.
I had just read an article published in the Alzheimer’s Disease Society’s
Newsletter by J. Keene discussing changes in dietary habits seen in dementia
but did not distinguish between the different forms of dementia. The article
concluded that people with dementia eat more and raised the question if
depression and a need for the body to try and raise the levels of serotonin
may be an explanation..
Some of the earliest changes noted by our carers was the
way some sufferers ate. Instead of putting a modest amount of food on their
plate they would help themselves to as much as they could get onto the
plate. Another habit noted was that often they would eat very quickly putting
large amounts into their mouths at a time. This would be followed by a
quest for seconds even if other people had not yet been served. These habits
showed a loss of the normal social discriminations that we usually make
all the time. A change in amounts of alcohol taken was mentioned. Several
carers mentioned that what a sufferer could see s/he would drink and that
this especially would be awkward at functions such as AGMs or church meetings
when glasses of wine may be put out for people to help themselves. Sufferers
also tended to serve themselves at dinner parties without checking if other
people needed serving or whether there was enough for everyone. The only
solution seemed to be to keep the bottle down the other end of the table.
I feel that many of these habits can be put down to utilisation behaviour:
what you see you use. This is seen a great deal in FLD and Pick’s disease.
Another change that was noted was a change in actual foods
enjoyed. Sweets and puddings would be popular and more sophisticated foods
enjoyed before would be rejected. Often sufferers would eat large amounts
of sweets and so put on weight.
Some more extreme problems seen in FLD and Pick’s is a
desire for certain foods eaten from a particular plate. Ray has eaten fish
and chips now for about eighteen months - every day, not from a shop either.
This is made worse by the fact that his wife hates fish and chips. Routines
particularly affecting the times of meals were mentioned. Dinner must be
taken at 6.50pm regardless. Also we often hear of sufferers having eaten
their dinner at friends would suddenly decide that it was time to leave
and nothing would change their minds. A desire to leave as soon as the
destination is reached is often seen in FLD/Pick’s.
I suffer from all of the above problems but I hope in
moderation. It is only when there is change in previous habits, tastes
and problems with social behaviour that carers need to be aware and to
try and manipulate the management of these problems.
Penelope Roques.
Diagnoses (from USA)
My Mother was diagnosed with Pick's two
years ago, and the more I learn about the disease the more I am sure it
is right because she is turning out to be a textbook case. I have cared
for Alzheimer patients, and this is very different. My Mother was diagnosed
with the help of an MRI, testing done by a neuro-psychologist, and an exam
by a neurologist. All this was done in Minneapolis were their diagnostic
procedures are better and they see many more cases because of that. This
isn't my opinion, but that of doctors there and here in Orlando. Her case
is only the second one that the neurologist at the Memory Disorder Clinic
here in Orlando has seen in his life, that he knows about. He readily admits
that he has diagnosed Alzheimer’s incorrectly in many cases. It should
be remembered that they can present together also.
When it comes to the care of the caregiver
we are dealing with the same problems, but with the care of the patient
it seems very different. I went to seminars for dealing with Alzheimer’s
because of lack of anything else, and I would leave frustrated in that
the things that they spent the most time on were not problems for me, sometimes
just the opposite, and the things that I needed help with understanding
and dealing with were never addressed. In the beginning you are not dealing
with someone that has lost their memory, just their judgement and reasoning
ability, not with someone that won't eat, but with someone that won't stop
eating, etc.
I personally think that a clear diagnoses
helps, and I would go where ever necessary to get one that you feel comfortable
with. Dealing with the disease and the patient is easier if you understand
what behaviours are "normal" and what to expect. Good luck!
Niki Philcox
From Richard King, 14 South
Avenue, Exeter, EX1 2DZ. Telephone: 01392 277520
DEVON & EXETER
In Exeter the health professionals - Clinical
Psychologists, Community Psychiatric Nurses, Social Workers - have set
up a Steering Group to devise a strategy for supporting "early onset dementia"
patients and their carers. I was invited to speak to the group about my
wife’s condition and the difficulties in dealing with it.
I also attended the Alzheimer’s Disease
Society Annual Conference in Bristol on "Early Onset Dementia" together
with our Social Worker and the ADS Assistant Regional Officer, which was
very informative. We were very interested to learn of a new project in
Oxfordshire aimed at offering support at home for "early onset" sufferers.
Richard ended his article by saying
that he was happy to act as a contact for the PDSG members in Devon but
like most carers he cannot always talk freely on the phone.
PLEASE DON’T
JUDGE ME HARSHLY
Joan Bradley
You may think me callous and uncaring, I joke and laugh
about our situation and even talk about the time when Norman will die.
I have written down the details for his funeral. He would never talk about
death, his or mine, as he couldn’t face it. Well I have to, as hard and
cruel as it may seem. None of us know when it will be our turn to go. I
like everyone else am not immortal. I have to make sure all details pertaining
to funerals and officialdom are written down as if anything should happen
to me first my children will not be left without guidance as to how to
cope.
I am bright and breezy most of the time but my inner feelings
are very different to what I show to most people. My close friends see
the real me, the hurt, not just mine but Norman’s and the children’s too.
The tears, the hopelessness, the loss and the sadness.
Meeting and getting to know other carers at the support
group has given me the strength to carry on. For this and the support of
my true friends I say THANK YOU.
So please don’t judge me by my outward signs, that is
just a facade that I put on for people.
Telling
the Children
C. S. Lewis once wrote, "No-one ever
told me that grief felt so like fear".
Surely there can be no greater grief
for a child than 'losing' a parent's personality and no greater fear than
that experienced when the loss is due to dementia.
For children this 'living bereavement'
introduces them to one of the greatest losses possible at an early stage
in their emotional and intellectual development.
We all want to spare our children pain
but mustn't underestimate their ability to perceive changes in the adult
upon whom they were always dependent.
Of course responses to this situation
will vary with age. We do know that to have suffered such an important
loss at a young age can lead to long-term problems that may be carried
into adult life.
So how can we help?
It is important that we:
1) Are aware that children are 'barometers
of feelings' and like us will be feeling anger, guilt, fear and frustration.
2) Explain things very honestly but
in a way that children can understand
3) Try to remove the fear and insecurity
that can lead to behaviour problems. For example dementia can not be caught
and the other parent is still always there for them. Schools need to be
informed that there are changes in family circumstances.
4) Involve children. They can adapt
to many changing circumstances. Older children are often embarrassed by
their parents anyway! This is compounded when a parent displays 'strange'
behaviour. They may share their feelings with those outside the family
but being involved in decisions is of great importance to them.
Dealing with loss is never easy but
ignorance is NOT bliss.
Carol Jennings
UPDATE
The PDSG is very grateful to the people who have remembered
CANDID recently. In turn we would like to remember the sufferers who have
died recently: Mr. Freddie Jones from Chichester, Mr. Alan Reeve from Plymouth,
Mrs. Judith Roberts from Tring, Miss Rebecca Honour from Bransgore, Mr.
Roger Howells from Stevenage, Mr. Geoffrey Edmonds from Kent.
PDSG funds have also received contributions arranged through
Mr. Peter Thompson and from the Royal Mail in Paddington which was arranged
through Mr. Philip Kelly. Talking of finance, the PDSG is happy to help
with fares for any carer financially embarrassed who would like to attend
one of the Support Group Meetings. Talking of Meetings, we are arranging
a seminar for March 10th. I will write a proposed outline of
the day but changes may well occur as contributors get bigger and better
ideas. The day will be free to carers but we will be charging professionals
£10. Places are limited to 55 so book early. If for any reason you
cannot use your ticket (once obtained) please let me know and I can offer
a place to someone else.
Talking of Meetings (again) the recent ECAPD Meeting in
Lille went well. Draft guidelines of the clinical criteria for the diagnosis
of Pick’s disease have been drawn up and are now being tested.
David Hunter (Chairman), Carol Jennings
(Carers Supporter),
Kate Homan (Editor) and I wish you a Happy Christmas, despite dementia.
Penelope
Information Sheets
We now have various information sheets available on:
-
Pick's Disease - An Explanation
-
Essential Information for Caregivers
-
Recent Advances in the Genetics of Familial Alzheimer's Disease
-
Lewy Body Dementia
-
Primary Progressive Aphasia - What is it?
-
Swallowing Problems That May Be Experienced by People Suffering
From Dementia
These can all be accessed via the World Wide Web. The address
is:
(http://dementia.ion.ucl.ac.uk/candid/factsheets/)
Some have also been sent out with previous editions of
the PDSG newsletter.
However, if you don't have access to the WWW and you or
somebody you know would like more copies please send an SAE to the
Dementia Research Group stating clearly which one(s) you would like and
we will send you them.
Diary Dates: PDSG Meeting
The next meeting of the PDSG will be on Tuesday January 20th
at 11.30. We have decided to make the start a little later to allow people
to get cheap day returns when possible. The pub lunch will be from 1.30-2.30
as we reckon service will be better when the main rush is over. Of course
anyone who wants to bring a picnic may do so. The morning will be for carers
to meet amongst themselves and the afternoon will be a more formal meeting
of the group. The meeting will be in the Victor Horsley Meeting room as
usual at the National Hospital for Neurology and Neurosurgery, Queen Square,
London WC1N 3BG
PDSG SEMINAR
- March 10th 1998
9.30 - 11 ANNUAL GENERAL MEETING, all welcome - Wedgwood
Room, 76 Guilford Street, WC1N 3BG
11 - 1pm The Carers Gathering - includes an exchange of
ideas
Coffee
11.00 informal talk by Penelope Roques on what needs the
group meets.
12.00 informal talk by Carol Jennings on caring for carers
1-2 LUNCH
SEMINAR - Gilliat Lecture Theatre, Institute of Neurology,
Queen Square, WC1N 3BG
2.00-2.30 Lisa Cipolotti Psychologist NHNN.
The role of the frontal lobes
2.40-3.00 Richard Harvey, Psychiatrist NHNN
An Update on Frontotemporal Dementia'
3.15-3.30 Tea
3.30-4.00 Invited Speaker
Hopefully Developing strategies for coping with behavioural
problems.
4.10-4.40 Rebecca Gladman and Carol Jennings
A childhood affected by dementia.
4.40-5.00 Summing Up the Day
5.00-5.30 Coffee in the Foyer
The Chairman and Secretary will then be adjourning to
the pub and warmly invite you to come too.
Carol Jennings, PDSG Counsellor
8 Brooksby Close
OADBY
Leicester
LE2 5AB.
Telephone 0116 2110416
Email: carol@jengs.force9.co.uk
PLEASE NOTE if you are receiving the newsletter by snail mail and
can access it through the WWW please could you let us know your e-mail
address which would save us postage.
If you have written an article, case study, or anecdote on any aspect
of caring, or have any comments on the news letter, please send it to:
Penelope
Roques,
The Pick's Disease Support Group,
The National Hospital for Neurology and Neurosurgery,
8-11 Queen Square
LONDON
WC1N 3BG
Tel: 0171 829 8772
Fax: 0171 209 0182
E-mail:
candid@dementia.ion.ucl.ac.uk
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