PCA SUPPORT GROUP
www.pcasupport.ucl.ac.uk
newsletter
Welcome to the [PCA] Support Group
Newsletter Issue 14, Sept 2012
There have been two PCA support group
meetings since the last newsletter was
circulated.
The June 22nd meeting allowed Seb the
opportunity to report on recent research
findings, as described in his recently published
article in the Feb 2012 edition of the Lancet
Neurology. We congratulate Seb not only
for his work in the field, but in achieving
recognition in such a prestigious publication
which can only serve to help raise awareness
of PCA amongst the medical profession. Whilst
it is not permissible to make the paper directly
available via the website, an abridged version
will shortly be available for you to download.
We look forward to hearing more from Seb in
respect of his contributions and those of the
other attendees at the Alzheimer’s Association
International Conference in Vancouver in July
2012.
The first of these took place on May 24th
2012 and juxtaposed a digital/media review
consultation with a carers meeting which
addressed the difficult topic of end of life
care. After Mr John Lumley had given a
moving account of the care he had been
able to provide for his wife Catita, who
died at home in January this year, we were
grateful to Ritta Kukkastenvehmas for her
very comprehensive and sensitive factual
presentation which covered a range of
issues pertaining to end of life care. As this
was Riitta’s last meeting prior to her move to
Canada, it was very fitting that we showed
our appreciation for all that she had done
for the group by way of a thank you card
and gift of jewellery.
Looking ahead, we are keen to extend the
remit of the group via the development of
regional support group meetings. Please do
see the article later in this newsletter and feel
free to get in touch with me to talk through any
ideas or suggestions you want to explore with
respect to these groups.
The provision of long term care at home
is one care option which works well for
some people, but not necessarily so well,
nor is it always possible, for others. We are
keen to invite a future speaker to address
the group on realistic matters to take into
account when considering and eventually
choosing care home provision. We have
already approached one potential speaker
on this topic but would appreciate any
recommendations people may want to
make.
The compilation of ‘factsheets’ which cover
information and issues with specific reference
to PCA are also on the agenda for the future.
‘Blue Badge Parking Scheme Eligibility’ is the
first of these to be completed and is available
to download from www.pcasupport.ucl.ac.uk
via the ‘Factsheet’ section on the dropdown
menu. I hope to begin a second factsheet
Myrtle Ellis Fund
The PCA Support Group is generously supported by the Myrtle Ellis Fund, as part of the
National Brain Appeal (Charity number 290173). For more information on the work of
the Fund or to make your own contribution to the running costs of the PCA Support
Group, please contact the Foundation on 020 3448 4724.
1
intro cont’
Please let Jill know if you would prefer to
receive this newsletter in a bold font format.
aimed specifically at care home staff in
respect of explaining the more specific needs
of people with PCA. This will hopefully tie in
with the publication of the completed ‘My
Requests’ template.
Autumn PCA
Support Group Mtg
Interest in the support group has been
expressed from individuals across many
continents. Our links with people in both the
USA and Australia are proving particularly
interesting. The association with fellow carers
and people with PCA in Australia is resulting
in the creation of a replica website which not
only contains much of our website content,
but relevant ‘Australia-specific’ information
as well. The next meeting date has now
been confirmed and I look forward to
welcoming as many people as possible
to that.
Fri Oct 26th 2012
10.30-2.30pm
The date for the autumn meeting is Friday
October 26th 2012, 11am-2.30pm
(coffee will be available from 10.30am .
We hope to be at the usual UCL venue;
Wilkins Haldane Room, Wilkins Building,
UCL, Gower St, London WC1E 6BT.
Map details overleaf.
VENUE: Wilkins Old Refectory, University
College London, Gower Street, London
WC1E 6BT
Agenda to include:
Speakers: Dr Diego Kaski and Dr Nathalie
Ryan will discuss ‘Neurological symptoms
in PCA and an update on research
looking at how spatial orientation is
affected’
and
Support group members, Lyn and Neil
Hopkins, will guide us through an
interactive presentation of the recently
launched PCA forum.
Thank you for your contributions and
suggestions to date and I trust that the
content of this newsletter fairly reflects the
input you have provided. Please do let me
have any contributions to future editions of
the newsletter or indeed topic suggestions to
be covered at forthcoming meetings.
I wish you well and hope you have a lovely
summer.
Jill
jill.walton@ftdsg.org
07592 540 555
2
directions
Directions for meeting on 26th October 2012
Wilkins Old Refectory, University College London, Gower Street, London WC1E 6BT
Underground
travelling from south to north stop outside Warren
The closest underground stations to UCL are
Street station, about five minutes’ walk from UCL.
Euston Square on the Circle, Metropolitan and
Services to these stops include route numbers: 10,
Hammersmith and City Lines, Goodge Street
14, 24, 29, 73, 134, 390.
on the Northern Line and Warren Street on the
London Buses Infoline: 020 7222 1234
Northern and Victoria Lines.
British Rail
London Underground Infoline: 020 7222 1234.
London has many mainline rail stations. Most
London Underground - Did you know that you
of these are a short journey away from UCL,
can ring London Underground Customer Services
with the stations at Euston, King’s Cross and St
on 0845 330 9880 the day before you are due
Pancras being within easy walking distance.
to use a service? They arrange for someone to
British Rail Infoline: 0845 748 4950.
meet you in the entrance area of the station at
Parking
which your journey begins, accompany you down
UCL Helpline 020 7974 4651 or 020 7974 4655
to the platform and onto your train. They then
(Staffed Monday -Friday 9.00 am to 5.00pm)
radio ahead to an official at the relevant station to
We are very conscious that travelling to and
assist with any required platform changes or take
around London can seem a daunting prospect.
you up to ground level.
Be aware that pre-booked travel is generally
Buses
cheaper than tickets purchased on the day
UCL’s Gower Street site is served by many
and that the Myrtle Ellis Fund provides help
Transport for London bus routes. Buses travelling
with travel costs where required. Contact Jill for
from north to south stop in Gower Street,
further details.
immediately outside UCL’s main gate, while those
3
contributions
Your contributions
Members of the PCA Support Group have
the on-going opportunity to contribute to
the newsletter and thereby ask questions,
share experiences, helpful hints or stories
which may benefit the wider group.
Updates on issues relating to raising
awareness of PCA or other local initiatives
of which members are aware could also be
of interest. Published pieces could range
from snippet ‘one liners’ to more detailed
commentaries… whatever feels most
appropriate!
Response to the filtered lenses
debate
publishing to room hire and the provision of all
refreshments at our meetings. Whilst donations
to the Fund are of course welcome, this group
is about far more than monetary contributions
and we value the personal contribution all our
members make by being part of the group such
as sharing their experiences of living with PCA or
caring for someone with PCA.
Seb Crutch comments : “We have actually tried
tinted lenses in one research patient and got
some encouraging pilot results (with a coloured
tint reducing the sense of movement she
experienced when viewing things which were
actually static). There is a good scientific basis for
this in that coloured lenses can help to shift the
balance of functioning between two important
Help applying for attendance
allowance
parts of the visual system - this approach
has been particularly useful in children with
developmental dyslexia who often experience
letters ‘jumping around’ when they try to read.
I do have plans to investigate this formally. In
the meantime, I think it is fine to suggest people
try coloured lenses provided the cost is not
prohibitive. I will look into seeing whether we
could buy a few sets of glasses which I could
bring along to the next support group for people
to take away and try and see if they provide any
benefit in a real world setting.”
One support group member encourages people
to use the services of Age UK when it comes
to advice and assistance in completing the
necessary attendance allowance/disability living
allowance application forms. He also found
that the people working in the social service
department to process his application were
very clear and straightforward in the telephone
conversation he had with them. His advice to
anyone applying is to simply describe everything
that you need to do to help the person with PCA.
[It is worth noting here that an application for
appropriate benefits should be triggered by the
Assessment of Need that everyone diagnosed
with PCA and their carers are entitled to. Request
this assessment via your GP or directly via your
local social services department if you haven’t
already had one.]
Giving by Standing Order
One of our members has asked whether it is
possible to make a donation to the Myrtle Ellis
Fund by standing order every month, as happens
with some other charities. The National Brain
Appeal is indeed able to set up and process
Standing Order donations to the Myrtle Ellis
Fund and the necessary form is available via the
‘Fundraising and donations’ section on www.
pcasupport.ucl.ac.uk. Alternatively, Jill can provide
the required forms.
The Myrtle Ellis Fund supports the entire cost of
running the PCA support group, from printing and
4
contributions cont’
What do people with PCA see?
C
arol Duvall has supplied the following
observation, and wonders just how much
we know, or don’t know about what people
with PCA actually see and perceive.
My husband has had PCA for about 6 years
and recently we were sitting at the dining room
table and he says “Barber, barber, barber.” I look
around for something that suggests barber. I
Voice-activated TV
trim his hair and shave him, so why is he saying
David Adams comments that as well as the voice-
barber? What is he seeing?
activated phone device he has recently installed,
he is interested in researching further a TV by
I look around and on a nearby table is a bottle
Samsung that is voice-activated. Has anyone
of red hot sauce and a can of drinking straws
else come across these? Please let Jill have any
wrapped in white paper.
responses for forwarding as appropriate.
I think……Red and white striped barber pole.
He saw the red and white and lines as the red
and white striped barber pole that is by the door
Radio 4 Broadcast
of the older barber shops. There is one of these
Teresa Jeffery writes: There is a very good
barber shop poles in Abby, the city north of Colby
broadcast on BBC Radio 4 from Wednesday 25th
on the outside of Denny’s barber shop where
April 2012 by Professor June Andrews who is
Allen used to go once in a while.
the Director of Dementia Services Development
Centre at University of Stirling, arguing for a
I carefully slid the bottle and straws out of Allen’s
revolution in our approach to dealing with
view and he then says, “Barber. Where did the
dementia. This is still available on BBC i-player
barber go? Did he move down the street?”
and I found it very interesting and wondered if it
He can’t see me sitting 2-3 feet in front of him.
would be of interest to others in the group? Visit
He will say, “Carol?” and look and look, but he
www.bbc.co.uk/programmes/b01gh8n4 to listen.
can’t see me. He can’t locate me, but his brain
Please send articles/responses for inclusion in
future newsletters to Jill Walton, 22 Brushwood
Drive, Chorleywood, Herts, WD3 5RT or email
them to jill@pdsg.org
and eyes are interpreting something so small on
the table.
I think the more we know about what someone
with PCA sees, the better it is.
Thanks.
My name is
PCA Identity Cards
I have an
illness and
need help with
l
Other medica
ns
itio
nd
co
In previous meetings and discussions, we
agreed it would be useful for people with
PCA and their carers to be able to carry a
small card which would alert others to the
fact that there may be a need for increased
understanding, attention or patience. We
are delighted to be able to tell you that these
cards are now available! Please contact jill@
pdsg.org.uk or telephone me on 07592
540555 if you would like one. We will be
including them with all new member welcome
and information packs from now on. I will also
Allergies
e
might help m
SomeoneI wh
haove
Name
[PC A]:
l. terIo
tes
Daytimpeo
r
bring a supply to each meeting.
5
cortIcal a
trophy
this affects m
y vision and th
inking
I would apprec
iate your help
Evening tel.
please read th
is card for mor
Doctor
e
information on
how to help
thank you
news & stories
Dementia Awareness Week 2012
This year’s Dementia Awareness Week took place May 20th26th 2012, the aim of which was to increase public awareness and
understanding of dementia and get people thinking and talking about it.
It was therefore a tremendous step for the Myrtle Ellis Fund [MEF] to be
represented at the main UCL Hospital in Euston Road.
Founded in 2007 by the family of Myrtle Ellis
following her diagnosis of Posterior Cortical
Atrophy, the Fund exists to provide support,
information and advice to individuals with rare
forms of dementia and their carers. It is part
of The National Brain Appeal [charity number
290173] and the PCA support group is one of
the groups supported by the Fund.
For more information on the work of the Fund
or to make a contribution, please contact The
National Brain Appeal on 020 3448 4724 or
go to www.justgiving.com/Myrtle-Ellis-Fund
6
news and stories cont’
Regional Support Groups
The PCA Support Group currently holds several meetings a year in
London. We are trying to expand the remit of the group and develop a
greater local emphasis with regard to group meetings.
The primary function of the regional meetings
will be to of fer people affected by PCA, their
families, friends and carers the opportunity to
meet and give mutual support to each other
as well as having the opportunity to chat
informally, make new friends and generally
relax and enjoy time together.
We would like the regional groups to be able to
decide what they want from their meetings and
be in control of how frequently they meet, with
what activities and speakers if they would like to
have them.
On November 27 2012, from 12noon until
3pm, we will be hosting a regional meeting
in Croydon. The venue for this meeting will
be in the Croydon Voluntary Action building,
82 London Rd, CR0 2TB. Local parking is
available at a cost of £5 per four hours. More
detailed invitations will follow to members
living in the surrounding geographical area,
but please contact Jill if you would like more
information in the meantime.
Many thanks!
To do this we need volunteers to help
coordinate and run the meetings. It seems wise
to have a group facilitator who is free of any
caring responsibilities, which may mean
involving friends or extended family in
the role.
Jill Walton can assist with
coordinating invitations to members
within a designated geographical
area and advertising the meeting
through local Alzheimer’s Society
branches. Room booking fees will be
reimbursed along with any refreshment
costs incurred.
We have piloted one meeting in
Worthing and are currently trying
to facilitate events in Kent and
Cheshire. If you think you might
like to volunteer to be a ‘Regional
Link Person’ please speak to Jill
Walton at any of our meetings, email her on
jill.walton@ftdsg.org
or telephone 07592 540 555.
7
more news
Making Global Links
In addition to the prospect of regional support groups around the
UK, we are very excited at the links we are also developing with groups
around the world.
We were contacted approximately one year
ago by Noel Allen, who felt very isolated following
the diagnosis of PCA in his wife. It has been
remarkable to accompany them as they have
worked towards getting their own support group
off the ground. Noel writes:
Thank you to the UK UCL PCA group from ‘down
under’, from our group: Australia PCA Support.
We are a growing group unfortunately, but have
been very fortunate to have the benefit of, and
would like to acknowledge the tremendous work
that has been done by, the UCL team. We have
an active Facebook support site called Australia
PCA support, currently with 16 members and have
linked that to our information web site
www.pcaaustralia.org with further links back
to the UCL home site.
The main problem we face here is lack of
information compounded by the lack of
acknowledgement of the disease due to it
presently being classified as a rare variant of
Alzheimer’s. It is not so rare if one changes the age
parameters to under 65 years old. It would then
more likely be 30% of the early onset people. By
sharing the information that we have from the UCL
group with our specialists and local GPs and also
the larger Alzheimer’s family, we are gradually
being acknowledged. It will eventually register
with the drug companies who fund the drug trials
and research that we are a growing potentially
large market. Hopefully that will speed up finding
the weapons to destroy this insidious disease.
By sharing the information we are also very
importantly tackling the typically long diagnosis
pathway and getting support in there earlier.
Thank you once again to UCL from us in Australia.
PCA meeting in Canberra. From left Marion (PCA),
Jill Brown (Alz Aust), Judy and Chris (PCA), Terry
and Wendy (PCA), Ken (PCA) and Helen
8
useful tips
Obvious to some, but new to others?
Several support group members have recently provided a selection of
‘tips’ for aiding and promoting independent living and quality of life in
people with PCA.
They comment that whilst some of the advice
they give may seem very obvious, it is often the
most obvious things that we miss! Thank you
to Christina, Carol, Graham and Sue for these
suggestions.
Please do let Jill have any other hints, tips or
general advice that you would like to make
available to the wider group.
Christina Ruse kindly put pen to paper after a
recent conversation with a neighbour who has
cared for her husband with Alzheimer’s disease
for many years. Christina recorded some of the
hints and tips that her neighbour described as
most helpful and we are very pleased to share
them here.
Eating
Dressing
• To help with independent eating: use plain
• To help with independent dressing choose
plates (no patterns) and always use a large
clothes without buttons or belts and footwear
plate whatever the size of the meal
without laces
• Separate the different foods into distinct
• Use clothing with a front that is very distinct
groups
from the back - a different colour, patterns,
• Whenever possible, make the meal ‘finger
food’ i.e. the person can pick up pieces with
etc.
• Use familiar favourite clothes for as long
their fingers Use brightly-coloured cutlery - a
as possible - new clothes are always more
different colour for knife, fork and spoon and
problematic
keep the colour coding consistent
• Always sit and chat through meal times to
make them a positive social event
General
• Join the RNIB books-on-disk facility and check
• Sometimes she tells her husband what he
at your local library whether they have these
has just selected from his plate so that he is
disks. Ask your relatives to send recorded
aware before eating of what will go into his
newsy messages as often as possible
mouth - ‘Ah you have carrots and they look
• Keep the person up-to-date with events in
good’ etc.
• If the person has favourite food, e.g. her
your family, e.g. anniversaries, births etc.
• My neighbour has made a disk with family
husband loves sultanas, add this sometimes
members explaining who they are, what they
to a plate whatever the meal
do etc and her husband enjoys listening to it
• Her husband’s taste is declining so she puts
often and so remembers family history
a pinch of sugar into gravy, boiled veggies,
even mashed potatoes and so avoids adding
more salt
• Lately she has changed to using a wide bowl
instead of a plate to keep food inside when
eating and her husband is using a spoon
much more than a knife and fork
• She maintains that a good liquid intake (3
litres daily) is really helpful to his well-being
9
useful tips cont’
Carol Duvall has supplied the following
suggestions regarding things that she found
most helpful for Allen, who has PCA:
• I found that when I put orange tape on the one
arm of his lift chair, he could put his hand out
onto the orange tape and then he could turn
around and sit down into the chair
Eating
• I found that it was helpful to use orange tape
• I also put the orange raised paint on the
on his spoon handle and only set his plastic
control for the lift chair. I put it on the UP
glass, with a cover and a straw, his plate and
button, so he could feel the UP part
his spoon on the table near him. Everything
• I have an illuminated 6-button TV remote else was set away from him, so it didn’t
control and I put black fuzzy cloth on the on/
distract him
off button so that he could feel it. I covered the
• I tried to give him lots of finger foods
mute with tape and put some fabric paint on
• I continue to use an ice-cream cone for his
the ‘vol. +’ so he could feel the raised bump.
ice-cream and puddings – even yogurt!
This remote really worked great. Simple, big
Sometimes I have to guide his cone, but it still
and easy.
gives him independence
• The other thing he really used a lot was the
talking clock. We liked the Pyramid talking
• The plastic cup with cover where the straw
was inserted was from the baby/infant
clock the best. I again put an orange tape on
department in our local store
the top where he presses down for the time.
It seems they need to know the time and he
• My refrigerator door and handle were beige,
so he could not tell where the handle was, so I
pressed it often. Since the button to press was
put dark green tape on the handle
on the top, it was easy for him to reach on his
table next to his chair and press the button
• I also put his food on the top shelf toward the
down.
side where he would reach in first. I also put
some green tape there
• Smaller, confined areas make things tough for
him. I try to sit him at the table so he can look
General
out a window or look out into a big area. I sit
• I used orange tape on the handles of the
him where he can’t see other people or close
to cupboards.
water faucets. I fortunately had a single
handle faucet
• He seems to see a lot of holes or shallow
places of floors, especially if the floor has a
• I put orange tape on the toilet handle and
tweed or busy pattern. Then when he thinks
used a raised toilet seat.
there is a hole in the floor, his walking is
• I painted the outside wooden stair steps
different colors so each would appear obvious
extremely unsteady. I have to verbally tell him
to him and later I painted the edge-strip
before he starts to walk that the floor is flat
orange
with nothing in the way, so he can walk.
• I painted the hand rails orange and at the
end I put extra tape so it was raised up, so he
could feel when he was coming to the end of
the hand rail. I later tried the yellow and black
There seems to be a reoccurring suggestion that
colour coding items tends to aid recognition and
usability.
tape at the end of the railing. Again having put
more layers of tape so it would signal his hand
he was coming to the end of the railing. It
prevented him from falling at the bottom of the
stairs
10
useful tips cont’
Graham and Sue Doggett have been members
of the support group since it was formed in 2007
and are therefore ‘ahead of the game’ on many
issues pertinent to our members. They have
provided very helpful input on many levels in
the past and we are grateful to them for taking
the time to put together this list of some of the
strategies which they have found most helpful to
them.
• RADAR key for disabled toilets; obtainable
for approximately £3.50 from your local
council. This fits public and private toilets and
is invaluable if one is travelling. Incidentally
we find that the toilets are well cleaned and
serviced.
• Talking watch with time and date which
automatically adjusts to time zones and works
off a battery. The Science Museum produces
a robust one with a rubber strap which is
relatively easy to put on.
• Daylight lamps which come in different sizes
to suit most rooms. The large one is on wheels
and easy to move. We obtained ours through
the Hertfordshire Sensory team.
• Being registered blind or partially sighted has
a number of advantages. We find the white
stick useful when travelling, especially on public
transport. One is entitled to reductions on the
railway for carer and partner; the T.V. licence
is reduced; blue badges are available for car
travel and are used by the person in any car
in which they are travelling; even the tax man
•
•
•
•
•
•
•
gives one a blind allowance - the fact that he
then takes it away again is inevitable!
Calibre audio books are a good source of
entertainment since they post items to you at
no cost and you return them in the same way.
Their address is Calibre, Aylesbury, Bucks HP22
5XQ.
Marks &Spencer produce reasonably-priced
tops which give the appearance of a shirt collar
and jumper but in reality are one garment and
can be slipped over the head without the need
to fight with buttons. They also sell slippers and
shoes with velcro straps which help for safety
and independence.
We find non-slip plastic useful on trays if items
are being transported around.
Laura Ashley produce some reasonably
attractive and easy to handle plastic drinking
glasses.
Coin holders, e.g. £2 or 50p mean that it is safe
to carry money without having to take out and
sort the coins each time.
Age U.K. in our area have a “handyman”
scheme whereby one can get small jobs done,
e.g. stair rails or bath safety handles installed at
reduced cost and by a vetted workman.
TELL friends, relatives and neighbours about
your difficulties so that they will feel more
relaxed about offering help. If you have
problems with recognition ask them to tell you
who they are in order to talk with them.
Obviously, no amount of practical suggestions
or tips however effective, can relieve the
difficulties entirely. The emotional and
psychological aspects of adapting to these
An interesting resource was made available at the
Alzheimer’s Association International Conference
in July 2012. ‘VISUAL DYSFUNCTION IN DEMENTIA
- Home Safety Tips & Recommendations’ is a
changing care needs have not been addressed
here, but present a huge challenge that people
with PCA, their families and friends are forced
to come to terms with. Trying to keep a positive
attitude and to relax may enable people to feel
more able to deal with a difficult situation but
we do recognise that the difficulties are much
further reaching than the obvious practical issues
helpfully raised here.
publication created by the UHN Multidisciplinary
Memory Clinic at the University of Toronto, by
Alison Lake OT, Maria Martinez MSW and David F.
Tang-Wai MDCM FRCPC. We plan to incorporate
this document into the newly created ‘Factsheets’
section of the website
(accessible via www.pcasupport.ucl.ac.uk).
Alternatively, contact Jill for a hard copy.
Show and tell
It seems appropriate at this point to introduce the idea of providing a ‘show and tell’ table at future
meetings. Please bring along any gadgets or aids which are proving helpful for you, along with
information about where/how to purchase.
11
facebook
Finding support via Facebook
Multimedia platforms are rapidly expanding as a means of facilitating
contact between people, enabling the transfer of information, advice
and support.
The minutes of the digital/media review
meeting held on May 24th are recorded at the
end of this newsletter and provide an outline
of three existing initiatives with which the PCA
Support Group is currently engaging.
Facebook is the platform on which some of these
initiatives operate and this seems an appropriate
opportunity to expand upon two previously
mentioned Facebook sites which our members
have been instrumental in promoting over recent
months.
Jan Womack and her husband Nigel, who has
PCA, have been members of the PCA Support
group for several years. Jan created the Posterior
Cortical Atrophy site on Facebook in March 2012
as she thought it would provide an easy route in
particular for younger relatives of PCA patients
worldwide to share thoughts and experiences
in a familiar social networking environment.
She recognised that her own daughters would
appreciate being able to view such a site and she
explains here how it operates:
“The Facebook site operates as a closed group
(content not visible or googleable to nonmembers) specifically for anyone with a personal
interest in PCA; sufferers, carers, relatives,
friends and medical personnel interested in
understanding and learning more about the
experience of living with PCA.
Its purpose is to provide mutual support, virtual
friendship, a sounding board and a source of
advice for members worldwide 24/7. Usually
within an hour of posting a comment on the
site there will be a flurry of helpful or thoughtful
responses. The membership has just gone over
100 and the response to the site and participation
has been brilliant and 100% positive.
There is a fair amount of help and advice for
regular Alzheimer’s disease online but a lot of it
is not relevant or specific to PCA sufferers or their
spouses, family or carers. PCA sufferers, being
younger at onset, are more likely to be, or have
children of, the Facebook Generation.”
Another previously mentioned Facebook support
and awareness group in which one of our
members has been influential in supporting
over recent months is ‘Memory People’. This
was founded by US-based Rick Phelps who
was diagnosed with early onset Alzheimer’s
disease in June 2010. Rick saw the need for ‘real
time’ interaction to be possible between people
affected by early onset Alzheimer’s disease or
other dementia syndromes.
His aim is to provide care and support for patients,
caregivers, friends and family who could come
together to share stories, support each other and
raise awareness of these conditions. Pauline
Baker, another support group member has
recommended this site having found it helpful to
her when faced with coming to terms with all that
a diagnosis of PCA holds.
To access either of these groups, you need to
have a Facebook account. From the Facebook
homepage, type ‘Memory People’ or ‘Posterior
Cortical Atrophy Awareness’ into the search bar.
From the result, click the ‘join group’ button and
one of the administrators will deal with your
request to join.
It is exciting and important that we embrace these
initiatives, recognising the means of support they
can provide.
The PCA Forum is quite separate to the
Facebook sites described above and will be
demonstrated at the autumn support group
meeting by its founders, Linda and Neil Hopkins.
Find us on Facebook
www.facebook.com/macmillancaribbea
Posterior Cortical Atrophy awareness
12
checklist
Checklist
This checklist will remain a feature in forthcoming newsletters, and can
be added to as appropriate. It is a brief reminder and pointer to those
services which may be of benefit for people with PCA.
Assessment of need: for patient and carer.
Request one via your GP or directly via your
local social service deptartment: [Disability Living
Allowance/Attendance Allowance/Council Tax
Reduction]
Lasting Power of Attorney: needs to be
established as soon as possible.
Admiral Nurse Service: information and support
for family carers, people with dementia and
professionals. Available locally in some areas
for practical support, but helpline open to all. Tel:
0845 257 9406 or email direct@dementiauk.org
RADAR keys: National key scheme for toilets for
disabled people. E-mail: radar@radar.org.uk Tel:
020 7250 3222
Blue badge parking permit
RNIB: Support and advice for people with sight
loss. Tel 030 3123 9999
E-mail: helpline@rnib.org.uk
Medic Alert or other identification networks
Disabled Living Sites, which sell products
designed to make daily living activities easier to
manage. Of particular note is The Knork is a fork
with wide, rounded and bevelled outer tines that
will safely cut food like a knife, without a sharp
edge to cut the mouth of the user.
A Lasting Power of Attorney: A Lasting Power of
Attorney is a legal document that lets you appoint
someone to make decisions about your welfare,
money or property. We advise that this is
established at the earliest opportunity. Find out
more about a Lasting Power of Attorney at
www.direct.gov.uk/lparegistration
13
minutes
PCA Support Group Special Meeting May 25 2012:
Digital/Media Review
There have been a number of digital initiatives since the support group
was founded. This meeting was called and chaired by Di Garfield to
discuss and review them and the role of the hospital and carers in their
use. These minutes are a brief layman’s guide; a full audio recording of
the proceedings is available online:
http://pcaforum.org.uk/sites/default/files/120525PCADigitalMeeting.mp3
Attendees: There were 14 attendees and one via
reviewed, the discussion led to the following
Skype from Australia
suggestions:
The meeting considered three current initiatives:
1.It should have a more user-friendly
interface
1
PCA Discussion Forum
This site is a platform set up by Neil and
5 main stages of the disease to include a
Linda Hoskins. This should remain patient/
description of the timescale and symptoms
carer led and will be focused on knowledge-
involved at each stage
sharing. Access to sites/forums to enable
the sharing of academic/medical issues
is a separate issue which needs further
2.It should include generic descriptions of the
3.A 6th stage should be added to include a
“carer-recovery” stage
discussion.
4.It is hoped that the definitions of the
disease above will help in the planning of
2 PCA Facebook Group
care needs and support carers in applying
for help from social services
This is called PCA Awareness designed to be
a chat site for Facebook users to get informal
support from each other. It includes content
as provided by other users. It has been
5.There should be a monthly update
including carers’ stories
6.Carer-mentors are needed to add
successful in raising awareness, but users
supportive ideas eg solutions to specific
should be aware that the site is public and
problems of care
ultimately controlled by Facebook. It has the
disadvantage that users can inadvertently
7.An email facility would help to keep the site
up-to date
come across information about the later
stages of the disease that they may not yet
Many thanks to everyone for their on-going
be ready for. The site will always be carer/
support and creative contributions.
patient led and PCA/UCL should not have a
Celia Heath and Di Garfield
role to provide “expert opinion”.
In Australia, the United States and Canada
where the disease is little known and not well
supported, the site is a lifeline.
3 PCA/UCL Support Site
This site is to be viewed as an information
portal including links to other resources
such as Martina’s blog “Metamorphosis
of a family” and the other social networks
mentioned above. As it is due to be
14
minutes cont’
PCA Support Group Carers Meeting May 25th 2012: End
of Life Care
Attendees: We met on a sticky, hot May
returned from London to find his wife on the
afternoon in the Research Centre at the National.
floor with a policeman and a social worker in
There were 34 attendees and one via Skype,
the house.
carers from all over England and National
1.4 Another crisis followed on Good Friday when
Hospital staff. We were happy to welcome seven
three of the usual nurses were not working
carers attending for the first time and hope you
and it was near impossible to get help.
found it helpful to discuss our rather difficult topic,
1.5 One suggestion was to have a carer 24/7 for
“End of Life Care”. Our group includes carers and
a period of three weeks with the fourth week
families who face all stages of the disease, giving
off.
us a bank of shared experience which is both
1.6 Advantages This carer was able to act on her
very valuable and highly supportive.
own initiative, e.g. giving a kiss and a cuddle,
This meeting was preceded by a meeting
if needed and Catita did not have to go into a
to review the various on-line means of
care home.
communication being currently available to
1.7 Financial help from the local authority
members and to decide on how these can be
amounted to half of the cost to convert part of
standardised and how they will be presented on
the house so the WC and bedrooms were on
the PCA web site. These are summarised in a
one floor.
separate document.
2.1 End of Life Care: Riitta Kukustenvehmas.
Minutes:
Riitta began by defining Advanced Dementia.
We began with a welcome from Jill. The
Sufferers become increasingly frail and
programme was to include a personal account
dependent. However, each sufferer and his/
of End of Life Care from John Lumley. The keynote
her family is
talk was given by Riitta Kukustenvehmas, who
different, hence symptoms can vary and
had returned to the National to talk to us.
support needs to be flexible.
Di proposed a vote of thanks to Riitta for her
2.2 Medical observations include:-
sensitive and efficient clinical work, her support
memory loss, increased confusion, and a
for our members as individuals and her work
further decline in mobility. The number of
with the support group itself. A presentation was
years before
made to her at the end of the meeting.
this happens cannot be predicted.
2.3 Nutrition and Hydration. The sufferer loses
1.1 A personal experience of End of Life Care.
appetite and cannot eat or drink. Hence
John spoke of the experiences of the Lumley
weight and
family, following the recent death of Catita.
muscle loss follow. There are contractures,
Catita was diagnosed with PCA in 2003.
i.e. the muscles contract, pain is experienced
In the early years, her condition could be
and limbs
managed relatively easily, so she was able
curl. Exercising the patient’s limbs becomes
to join in relatively well with social and family
difficult, but can help. Skin integrity is not
life.
maintained; red patches indicate developing
1.2 As her condition began to deteriorate, agency
bedsores. The person needs to be turned but
nurses and carers came in to help.
may
1.3 The first crisis came when the carer faced
revert to one position. A water bed is
an event she could not cope with; she had
invaluable.
contacted the emergency services. John
15
minutes cont’
2.4Infections e.g. of the urinary tract become
retain old likes and dislikes (e.g. sugar in tea).
more frequent.
Be flexible in the approach to mealtimes,
2.5 Behavioural and psychological signs become
giving sips of water, high protein drinks
even more pronounced.
etc not necessarily at specific times. A
2.6 To sum up: It is vital to provide supportive,
dietician needs to assess and advise and
palliative care for all concerned – sufferers
a speech therapist can assess swallowing.
and carers
Artificial feeding via the stomach wall has
alike. End of life care aims to improve the
disadvantages and can lead to infection.
quality of life for all involved.
Mouth care is important in case of sores and
2.7The care of patients with dementia is similar
to terminal cancer care except that it goes on
ulcers.
4.3 “How to cope with infections?”
longer. It involves a high level of physical and
Advanced dementia sufferers have impaired
psychological carer distress.
immunological response especially to
2.8Dementia is not seen as fatal; this can lead to
urinary tract infections (if incontinent) and to
delays in e.g. making a will.
pneumonia (which is a common cause of
death). There is a high risk of delirium, since
3.1 Specific needs. Communication deteriorates
acute confusion can change dramatically if
severely. Patients have difficulty in expressing
there is an infection. Normal symptoms may
their
be different in dementia patients.
needs and understanding verbal
4.4 “How are patient’s wishes for End of Life care
communication from other people.
implemented?” Advanced decisions legally
3.2 Pain. People with advanced dementia
formulated are legally binding, so make
continue to express pain verbally and non-
sure a copy of the documents are available
verbally.
by the bed and with the ward staff.
It becomes increasingly difficult for carers and
If the main carer is not with the patient, make
medical professionals to perceive this. Try to
sure a copy of End of Life wishes are stored
remain calm and communicate calmness. Try
in the home where they can be found by
to assess the difference between calm and
emergency services – e.g. bottle in the fridge.
distressed behaviour in the patient.
Add a photograph of the person concerned.
However, it can be difficult to interpret e.g.
4.1 Response to questions, “When is it necessary
Living Wills: ultimately, the decision is with the
for a patient to go to hospital?”
Many patients can still hear and understand.
doctor.
4.5 “How does this change if the person is in a
Medical professionals and carers will
care home?” Behavioural changes occur.
therefore need to look for signs of response
The sufferer may become very quiet and
and asses the severity of these.
disinterested. They may develop repetitive
* ask the person
movements such as swaying, or repetitive
verbal expressions, which can be comforting
* identify distress behaviour
* assess risk factors and try to prevent them
(or sometimes show distress.)
* treat underlying causes – including pre-
existing conditions
Hallucinations may develop: if they are not
harmful there is no need for treatment with
* Non-pharmacological treatment involves
drugs.
massage, application of cold or heat.
Carers may need to seek a separate
4.2“How to cope with nutrition and hygiene?”
appointment with the doctor treating the
patient to review prescribed drugs.
Sufferers demonstrate dyspraxic behaviour
and because of swallowing difficulties, may
Restlessness, agitation or aggression can all
not be able to feed themselves. Basically,
be symptoms of either distress or comfort.
whatever works is good. The person will
16
minutes cont’
4.6 “How can I best cope with distressed
medical practitioners. Documents to help with
behaviour?”
planning i.e. medical and legal, will come
Failure to understand everyday needs, e.g.
onto the PCA website shortly. Remember the
washing and dressing, can be frightening,
need for a 2 pronged approach: legal and
as can failure to understand environmental
medical.
change i.e. in light, heat or noise. Reactions
5.6 The new PCA Forum may help with its
to pain and discomfort can be similar. Help
collective experience within the PCA support
from a councillor who is outside the care
group. A directory is being set up on the
situation is worth seeking.
site. How to get a user password etc are
Ideally drug management of the above
symptoms should be the last resort.
explained in the recent newsletter.
5.7 Further sources of medical and other
4.7Incontinence? This pushes boundaries! See a
information needed for planning are to be
doctor as soon as it first happens. It may be
found via The Welcome Trust which helps
caused by infection, constipation, prostate
with wider lay access to academic work.
problems or the side effects of drugs.
The Marie Curie Cancer booklet gives useful
GPs can refer the sufferer to the continence
advice on end of life preparation, but please
advisor who will facilitate supplies of pants,
remember this stage lasts longer with PCA
pads and moist toilet tissues.
and dementia in general.
5.1 Decision making Questions and Discussion.
Place of care is the first issue: whether home,
hospital, care home or hospice. Doctor in
charge has the main burden of care. Varying
costs and standards of day care are a serious
problem e.g. if a person is blind, there will be
an extra charge.
The planning of Advanced Care Packages
is a very individual matter for family and
sufferer.
5.2 Simple Advanced Statements in writing
formalising what a person wants may not
be legally binding. A crisis plan is highly
advisable: This may include an Advanced
Decision about wha should/should not
happen ais legally binding. The role of
the doctor is then to decide if the situation
applies. Lasting power of Attorney an be
set up to include terminal care as well as
terminal financial arrangements. An Essential
Information pack needs to be set up.
5.3It is wise to seek help early on, whilst
communication is still good and the sufferer
can be involved in care decisions.
5.4You, the carer are the expert contact- so,
look after yourself! The Dementia Crisis
Team can sort out problems if the carer is
exhausted. But you will need to have the
background knowledge to know what to ask
17
Celia Heath June 2012
minutes cont’
PCA Support Meeting: MinutesJune 22nd 2012
Research into Visual Perceptions in PCA
Venue: Wilkins Old Refectory. This excellent
Programme:
self-contained venue with its easy access to
Dr Seb Crutch’s talk on “Research into PCA”
all facilities on one level, was again much
was illustrated by a series of slides showing the
appreciated. One new member commented,
difference between visual perception in PCA
“This is like being at home!” Her long journey had
people and those with normal vision. **These
been worth it.
slides will be available on the PCA website and
the PCA Support Forum.
Programme:
2.1 Currently it is quite difficult to describe and
1.1 Jill welcomed 61 attendees and one via
define what the visual world looks like
Skype: PCA people, carers and National
through the eyes of someone with PCA. Some
Hospital medical staff. It was lovely to meet
neurological conditions (e.g. certain types
ten new members, as usual from far and
of stroke) cause problems which we can
wide – from Luton, Saffron Walden, Devon,
picture (e.g. scotoma, quadrantanopia, and
Tewkesbury, Chester and Canning Town. We
hemanopia), but we cannot yet do this for
hope you all enjoyed the programme and the
PCA.
support of others facing the same problems.
2.2 The first symptoms are failing to see exactly
1.2 As part of the Alzheimer’s Society Dementia
what things are and where they are so the
Awareness Week in May, UCLH hosted a
relationship between the two becomes
stall in the main foyer of UCLH at which the
distorted, e.g. PCA people cannot read the
Myrtle Ellis Fund, including PCA Support
dotted letters of train or bus destination signs.
Group, DENDRON and the Alzheimers’
2.3 Cells at the back of the brain, which interpret
Society were represented. The Dementia
between where things are in relation to each
Priority Setting Partnership, working via The
other, are beginning to malfunction, hence
James Lind Alliance is seeking to establish
low lighting and sudden bright lights during
research priorities. If you would like to
night driving become increasingly disturbing.
volunteer, Dementia Priority Setting Forms
are available on line via www.alzheimers.
3 The slides.
org.uk/site/scripts/documents_info.
3.1 Using two photographs of Brighton pier, Seb
php?documentID=1804 by contacting Nicola
demonstrated how eye tracker technology
Hart at the Alzheimers Society directly for
works. Blobs on the images show where a
hard copies at nicola.hart@alzheimers.org.
person’s gaze is directed in order to identify
uk or phoning 020 7264 5998. Volunteers
the scene. PCA sufferers cannot identify
can also contact Jill by phone, letter or email
suitable details to interpret such a scene. As
whichever is most convenient. See also the
they cannot see the whole picture, they will
feature in this Newsletter.
focus on the wrong parts. Hence sand and
1.3 Following the success of our first regional
pebbles suggest a building site – the straight
meeting in Worthing, a further meeting is due
pier, a railway line. Only slowly can they put
to take place in Crawley. It is hoped that these
the whole picture together; it is like broken
meetings will provide greater social contact
shards of a mirror lying in the wrong order.
for PCA people and their carers in their local
3.2 The picture of people reading on a bus again
area. Jill called for more Regional Volunteer
illustrated the difficulties PCA people have.
Organisers. If you are considering helping in
They are better at reading small print rather
this way and can liaise with others affected
than large headlines. The use of a Kindle
in your local area, please contact her to
could potentially help because it allows
facilitate, but your local knowledge is vital.
people to change the font to their needs.
18
minutes cont’
3.3 Crowding is also experienced by PCA people;
they often cannot read the middle letters.
5 Disease Progression
5.1 MRI scans over several years show how the
Part of Keir’s research is intended to find the
optimal spacing between letters.
back of the brain shrinks.
5.2PCA in itself is a syndrome, not a disease.
3.4 Fixation (keeping your eyes fixed on a single
Since it can be caused by Alzheimer’s
point or object) is often affected in PCA
disease, it can lead to erroneous judgements
leading to the sensation of things moving
from people who hear such a diagnosis. The
when they are in fact still. A camera can pick
stereotype of an old, confused person comes
up and illustrate a person’s difficulty in fixing
to mind. This is not reflected in PCA sufferers.
on one point.
We need to get better at distinguishing the
3.5 Certain opticians’ tests may be inappropriate
or require adaptation for people with PCA.
causes of PCA.
5.3 Research is ongoing into whether there are
Tim has teamed up with an ophthalmologist
to publish an article on visual difficulties in
genetic factors involved in.
5.4 Treatment is complex and there is a need to
PCA in training magazines.
map research conclusions.
5.5 Research in France is being conducted into
4 Points from the floor.
4.1 Researchers at Aston University in
immunological factors.
5.5 There is no current consensus on what
Birmingham on Ophthalmology courses
constitutes a definition of PCA and its
need PCA volunteers and normally sighted
symptoms – clearly more than failing sight is
volunteers for trainees to examine.
involved. Spelling errors, inappropriate use
4.2 How to choose an ophthalmologist? Does
of the hands etc are all part of what PCA
one need a specialist?
sufferers experience. The PCA working party
It is important to go frequently to eye
in Vancouver July 2012 is to agree consensus
examinations to give the brain the best
criteria for international studies.
possible visual information. Do ask to be
6 Other Factors Affecting International Studies.
passed on to seek expert advice, if this is
appropriate.
4.3 Some PCA people may benefit from tinted
Should PCA people be involved in drug tests
where visual tests are used?
Should the term PCA be applied to everyone
glasses and research is ongoing into the
who has deterioration at the back of the
effects of various tints and also into the
brain?
effects of bright light. It is always useful to
remind people that the problems are to do
with the brain rather than the eyes. There is
and PCA needs to be further clarified.
huge variety in what works: e.g. some PCA
people find pink background paper helpful.
The relation between Alzheimer’s disease
We still need to know why disease attacks
various different parts of the brain.
There is a need for international research
It is necessary to run pre-screening tests to
work to be pooled to get a higher number of
assess individual perception.
cases to research.
4.4 Research aims to keep people reading for
There is a need to set up support groups in
longer in the earlier stages of the condition.
other countries besides the UK. It is hoped
Many people have to accept that printed
that these can be co-ordinated. Meanwhile
books are easiest to read. Many ordinary
Facebook contacts are global. The PCA web
things, e.g. supermarket price notices and
forum and the UCL PCA web page all provide
tags become problematic.
widening contacts.
19
Many people are still experiencing Dementia
minutes cont’
symptoms but waiting for a specific
diagnosis. All too many people write off
memory loss, for example, as an age-related
effect and simply accept this symptom as
inevitable.
Diagnosis needs to improve; in particular
there are no reliable figures yet for early
onset PCA.
We have yet to tackle the problem of
loneliness and how to relate to other people.
There is a vast need for social groups locally
in a person’s own recognisable environment.
7.1 Fundraising needed. Di explained how the
Myrtle Ellis Fund came to be set up by Myrtle
Ellis’s daughters. We have achieved funding
for Jill’s coordination work for two years, She
has proved invaluable, but we are now into
the second year. We urgently need to extend
her contract so new fund-raising ideas are
vital and urgent.
Our second session was run by four members
of the London Symphonia.
Our string quartet played a medley of short
pieces which everyone recognised and enjoyed.
Air on a G String
Funiculi Funicular
Gilbert and Sullivan: Three Little Maids from
School
Grieg: Wedding Day
Strauß: Piccato Polka
Delieb: The British Airways ad.
Making Whoopee.
Pennies from Heaven
The Cornetto Advert
Offenbach: Orpheus in the Underworld.
Celia Heath, June 2012
20