posterior cortical atrophy
PCA SUPPORT GROUP
www.pcasupport.ucl.ac.uk
newsletter
Welcome to the [PCA] Support Group
Welcome to this PCA Support Group
Newsletter. I hope that the content of the
newsletter is of interest to all who read
it; however, I am acutely aware of the
difficulties in producing information which
meets everyone’s needs and in a style
which they are comfortable to embrace.
Please do let me have any suggestions
regarding the format of the newsletter
and indeed any contributions you wish to
make.
This newsletter is available in a font and
format which people with PCA may find
easier to read. Please let Jill Walton or
Laila Ahsan [r.ahsan@ucl.ac.uk or on
020 3448 3652] know if you would like
to receive a copy. It will also be available
as an audio recording, accessible via the
website.
For those of you who receive the
newsletter as hard copy, we trialled the
‘Articles for the Blind – Free postage
Scheme’ in our March newsletter
circulation. 4 copies have been returned
to sender, but otherwise we assume that
the rest successfully reached the intended
recipients! Having access to this scheme
makes a considerable saving to the
Newsletter Issue 19, June 2014
postage costs incurred by the MEF, and may
I please remind you that if you are able to
receive the newsletter electronically, we are
very happy to provide it via this means.
Dr Timothy
Shakespeare
Dr Keir Yong
Congratulations and best wishes are
extended to Dr Timothy Shakespeare and Dr
Keir Yong, both of whom are fondly known
to many of you either because of your
involvement in their research projects, or as
a result of their much valued participation
at support group meetings. Tim and Keir
successfully completed their PhDs in March
of this year. Well done!
Regional meetings continue to take place
in Oxfordshire and Berkshire, with a second
Cambridgeshire meeting currently being
planned. There will be an inaugural regional
meeting in Hertfordshire later in the year and
MEF MYRTLE ELLIS FUND
supporting rare dementia
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. Alternatively visit www.pcasupport.ucl.ac.uk or www.justgiving.
com/Myrtle-Ellis-Fund
1
intro cont’
early stage discussions are taking place with
regard to collaboration with a unit in Scotland.
Details of forthcoming meetings are listed
overleaf. Minutes of the UCL meetings are
published at the back of the newsletter.
embracing these diagnoses is critical. To
this end, we are working towards a raising
awareness event which will focus on exactly
these issues. I have secured a House of Lords
venue for this event, which will take place
in early autumn and will of course keep you
updated regarding any developments.
We regularly get contacted by people from
across the world who are coming to terms
with a diagnosis of PCA and who are unable
to find local support. As such, it was a real
privilege to be able to welcome a family from
South Africa, who delayed their flights home
after visiting the UK, in order to fit in a visit
to a PCA support group meeting. What a
sad reflection of the poor recognition of this
condition that many people are struggling
with, let alone the difficulty we know exists in
accessing appropriate provision. The need
to raise awareness of not only PCA, but
rarer types of dementia in general, and the
unique challenges faced by younger people
May I take this opportunity to remind and
invite you to the forthcoming meeting on Fri
June 27 2014 The venue will be Wilkins Old
Refectory which is in the Wilkins Building,
UCL, Gower St, London WC1E 6BT. We will
be recording this meeting and subsequently
uploading an audio file which will be
accessible via the website.
I look forward to seeing you at one of these
meetings or indeed being in contact with you
in whatever capacity is most appropriate.
Jill Walton
Future Meetings
from 1pm -3pm in the Seminar Room,
Herchel Smith Building, Addenbrookes
Hospital, Cambridge, CB2 0QQ Contact
Val Freestone [01223 768005 valerie.
freestone@addenbrookes.nhs.uk ] or Jill
Walton [07592 540 555 jill.walton@ftdsg.
org ]for details.
Full support group meetings are scheduled
for: Fri June 27th 2014 Chandler Room B02,
Chandler House, 2 Wakefield Street, London
WC1N 1PF. (This is about a 10 minute walk
from the following: King’s Cross/St.Pancras,
Russell Square or Euston station)
Coffee will be available from 10.30am and
lunch will be provided. Meeting will finish by
2.00pm. Provisional agenda: Adam Fyffe is
the lead clinical psychologist in the dementia
services in Newham and will be joining us to
speak about the experience of loss, that is
familiar on numerous levels, not just by the
person receiving the diagnosis of PCA, but by
their family, friends and colleagues too.
Oxford regional PCA Support Group Mtg:
Monday 11th August. The venue for this
meeting will be at the home of Martina
Wise: in Blewbury, Oxfordshire. Please
RSVP with email and/or mobile details to
mrsmartinawise@gmail.com or 07958
668 035 (Martina Wise’s mobile). This
will be an informal social gathering for
people affected by PCA.
Berkshire Regional Support Group Mtg:
Carers Meeting
November (date to be confirmed) at
Barkham COAMHS, Wokingham Hospital.
This meeting will be organised in
conjunction with the ‘Young People With
Dementia’ Berkshire West group.
Friday 26 September 2014 in the Seminar
Room, Dementia Research Centre, 1st Floor,
8-11 Queen Square, London, WC1N 3AR. 11am
-2pm.Coffee available from 10.30am and
lunch provided.
Please contact Jill for more information
about any of these meetings.
Regional Meetings
Hertfordshire Regional Support Group
Meeting:
Regional meetings provide an informal
opportunity to meet other people affected by
PCA.
Wednesday October 1, 10.3012noon. The venue for this meeting
is in The Point Meeting Room, Christ
Church, The Common, Chorleywood,
Hertfordshire,WD3 5SG.
Cambridge regional PCA Support Group Mtg:
The second Cambridge regional PCA support
group meeting will take place on July 23
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directions
Directions for forthcoming meetings
Chandler Room B02, Chandler House, 2 Wakefield Street, London WC1N 1PF
New Interactive UCL map
Chandler House is located in Wakefield Street,
about 500m south of King’s Cross and St.
Pancras stations. It is not recommended that you
travel by car, since no visitor parking spaces are
available. Also Chandler House is located within
the London Congestion Charge Zone.
There is now a new interactive map designed
by the UCL Casa team. This map is useful in
navigating across the UCL campus from one
building to another.
Directions to Chandler House
from St. Pancras
by Underground
Kings Cross & St. Pancras Station (Northern,
Victoria, Metropolitan, Circle & Picadilly lines)
Kings Cross & St. Pancras stations are on the
north side of the main Euston Road. Exit the
underground station on the south side, or cross
the road at street level. Walk west along Euston
Road to the junction of Judd Street (there is an
Irish pub on the corner). Turn left along Judd
Street until you reach traffic lights at the junction
with Tavistock Place. Turn left, then after 20m,
turn right into Wakefield street. Chandler House
is the second building entrance on the right.
Russell Square Station (Piccadilly line)
by Bus
Gray’s Inn Road: 17, 45, 46.
Woburn Place: 59, 68, 91, 168
Euston Road: 10, 30, 59, 73, 91, 205, 390, 476
Russell Square: 7, 188
from British Rail stations
Directions to Chandler House
from Russell Square
To Kings Cross & St. Pancras:
Charing Cross - take Northern line
Euston - take Victoria or Northern line
Liverpool Street - take Metropolitan or Circle line
London Bridge - take Northern line
Marylebone - take Metropolitan or Circle line
Paddington - take Metropolitan or Circle line
Victoria - take Victoria line
Waterloo - take Bakerloo line and change to
Victoria line at Oxford Circus
The Russell Square station exit is on Bernard
Street. Come out of the station and turn right
along Bernard Street until you get to the
roundabout at the corner of the the Brunswick
Centre. Turn left, keeping the Brunswick centre
on your left up towards Hunter Street. Walk up
to the traffic lights with Tavistock Place. Turn right
then after 20m turn right again into Wakefield
Street. Chandler House is the second building
entrance on the right
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fuundraising
There have been some remarkable fundraising
achievements since the last newsletter was
circulated. Not least is the Whitley 10k run that
Paul Bulmer completed in April this year. Paul
was diagnosed with Posterior Cortical Atrophy
two years ago. His wife Alison explains: ‘Paul
has always been a runner, purely for pleasure.
Now he runs with guide runners because of his
visual processing difficulties. He is 55 years old,
can no longer read and has difficulty processing
distance, depth and speed, amongst other
things! Running is more of a challenge these
days, but he wants to continue to run for as
long as he is able to. He relies upon family to
get him out and about and friends to help him
to continue to enjoy his hobbies; running, music
and art. He raised money for research to help
towards early diagnosis, support and towards
deeper understanding of this life changing
disease. Paul completed the 10k in an amazing
1 hour 7 minutes 31 seconds - great posse in
attendance and fabulous guide runner.’
face of adversity. You can read local newspaper
coverage of Paul’s efforts at http://www.
chesterchronicle.co.uk/news/chester-cheshirenews/helsby-man-rare-visual-form-6999147
Paul Bulmer
We can only be in awe of this achievement and
acknowledge Pauls great determination in the
Dennis Hotten’ s wife was diagnosed in 2006
with Alzheimer’s disease at the age of 55,
and subsequently received a diagnosis of
PCA.She is currently in a nursing home, and
her eldest daughter, Jackie, pictured below,
ran in the London Marathon on the 13th April
this year.
Mags McCammon died in July 2012, having
lived with PCA for several years. Her son Alan
is organising a charity bike ride in Norfolk
to raise funds for the Alzheimer’s Society in
memory of his mother. ‘66 miles for Mags’
involves cycling from the Dock Tavern,
Gorleston-on-Sea to the Seamarge Hotel
in Overstrand, North Norfolk and back on
Saturday 28th June – starting at 9am sharp. I
am hoping for about 10-15 cyclists. I estimate
that this will take around 2 ½ hours each way,
it’s a leisurely ride, not a race, so get your
shorts on and the SPF50 out! There will be a
few stops for refreshments (if Dad can keep
up in his car), so we should be back in plenty
of the for the World Cup QF match at 5pm – of
course, we all expect England to get that far
don’t we….I have setup a just giving page, so
if you can’t make the bike ride, please tell all
of your friends and ask them for a couple of
quid; it’s for a good cause!
Details of all three fundraising ventures can
be found on the website http://www.ucl.
ac.uk/drc/pcasupport/fundraising
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your contributions
PCA Educational Tool
Linda and Neil Hoskins have created an
educational tool for those that are new to
PCA. (Content on financial support is aimed
specifically for people in the UK.) It can either
be accessed via their website or it can be
downloaded as a free Android ‘app’ available
from the Google Play Store;
Website: http://www.ldnh.co.uk/sites/
default/files/PCA/multiscreen.html
Google App: https://play.google.com/store/
search?q=posterior%20cortical%20atrophy
Remote controls
Pam O Donnell noticed the story in the March
newsletter on TV remote controls and writes:
I bought a special remote for low vision on
Amazon http://www.amazon.co.uk/Flipper-BigButton-Universal-Remote/dp/B002GR1YZ0 that
is easy to use. Another woman in the UK uses
a child’s TV remote http://www.amazon.com/
Sony-RM-KZ1-Universal-Remote-Control/dp/
B003ZXGNFA .
On another fundraising note, a social
fundraising event is being organised for the
autumn. Please save the date and circulate this
invitation as widely as possible!
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your contributions cont’
Pinterest
The eye-pal reader is a standalone machine
that is very easy to use and has simple button
operation. You switch it on, place a piece of
paper on the base and it automatically scans
it and reads it aloud to you. It can read books,
food packaging and even pill packaging as it
automatically switches to small print mode if a
small item is placed on it. There is an option to
use hand movements to operate it if preferred.
Pam O Donnell has also asked us to raise
awareness of a PCA Pinterest board available to
view at www.pinterest.com/pcasupportusa. We
will be adding this site to our resources page on
the PCA support group website and welcome
your comments and feedback.
Eye-pal reader
Humanware were more helpful than other
suppliers as they were happy to send a
demonstrator to your home free of charge and
no obligation to buy. Their rep Bernard was
extremely helpful and patient and I would highly
recommend both him and the eye-pal reader!’
Ilana Rinkoff researched a piece of equipment
to assist her aunt to read her own post and
also food packaging. ‘She does not have a
computer and due to the nature of PCA the
usual magnifying equipment was not helpful. It
is not cheap but is a fantastic tool to assist PCA
sufferers to regain or retain independence in
reading longer.
http://www.humanware.com/enunited_kingdom/search?keywords=EyePal+Reader&go=yes
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PCA Focus Groups
Summary of PCA Focus
Groups
Key issues
• Loss: of independence, confidence, driving
licence, control, spontaneity, social life, friends
• Needing to ask for help more than you would
like
• Change in roles (for the person with PCA, and
partner or other family members)
• Unpredictability
• “I will lose my friends”
At the March PCA support group meeting,
we facilitated a series of small focus groups,
in which people shared the aspects of PCA
which they considered unique and/or critical in
respect of coming to terms with the diagnosis
and seeking support. Susie Henley [Clinical
and Research Psychologist] and Mandy Haines
[Specialist Nurse] have summarised the
discussions and we welcome your additional
comment and feedback.
Practicalities
• Hard to eat out
• Hard to get dressed
• Lighting isn’t always ideal
• Hard to find toilets that both sexes can use
when out
• No services or activities available for younger
people with PCA – everything is targeted at
older people with memory loss
A diagnosis of dementia at any age is traumatic
but we identified that those diagnosed with
PCA (Posterior Cortical Atrophy) have particular
difficulties coming to terms with the illness. This
is possibly because it is so rare and difficult
to diagnose. People typically take 3-5 years
or longer to obtain a diagnosis having done
the rounds of opticians, GP, ophthalmologists,
psychiatrists, counsellors. Because the initial
symptoms are mainly visual impairment it is
difficult for others to understand that it is not
simply a matter of a new pair of varifocals. We
became aware that many patients diagnosed
with this disorder struggle to come to terms with
the diagnosis and find the symptoms particularly
frustrating as do their partners/families. Quite
a few of these patients were being referred to
psychology for individual therapy.
Stigma
• It’s an “invisible” problem, because you can
still talk; plus to some extent you try to hide
the problem
• It is difficult to explain to people – some use
“Benson’s syndrome” instead of “dementia” or
“Alzheimer’s” which have stigma attached
Diagnosis
• Diagnosis takes a long time
• “It’s a relief once you know”
• Not given enough information at diagnosis –
but also you don’t want too much information
on Day 1
• Need to be given more information about how
it affects you, how it is a visual problem but
caused by the brain
• Demystify the links between brain and
behaviour – translate PCA into the effects on
daily life
• GPs have never heard of it
• There is a need to raise awareness
Most retain insight and because the illness is
rare and unusual they find it difficult to explain
to friends and family. They will often have to give
up driving early on in the illness so experience a
loss of independence.
We know from testimonies that people benefit
from the support groups to exchange practical
ideas and share experiences and began to look
at whether they and their partners may benefit
from more formal structured therapy to explore
the emotional issues surrounding their illness.
Emotions
• Sometimes hard for person with PCA to realise
they are having difficulty; clearer to the partner
or family but they find it hard to say
• Angry at how long it takes to get a diagnosis
• “mortified” by the diagnosis, tears, upset, lack
of support
• Sense of being on one’s own
• Need energy to deal with anger and feelings
of helplessness
• Mood affects symptoms
With many thanks to everyone who participated
in a focus group at the last PCA meeting, here
are some of the key points. Everything that was
said was recorded, and is important, but for the
newsletter we have just tried to give a broad
overview of what was discussed. As always we
thank everyone for being so open and willing to
share their views with us and each other.
7
PCA Focus Groups cont’
• Subject to mood swings
• Cycle of withdrawal even before diagnosis
• Scared for the future: “I will end up in a
home”
• “I feel robbed”; “I’m not me anymore”
Partners
• “burden” – the anxiety of trying to keep
someone safe
• Carers need to talk about how they feel
without the person with PCA being there
• Loneliness
Individuals
Each person has a different journey;
personalities make a difference
Practicalities of running a
therapy group for PCA
• “Coming to terms” at the beginning vs “Living
with PCA” at a later stage
• Need space for patients & carers separately
– both want to say things without the other
hearing
• 4 couples only
Support and things that help
• “People should be forced to come to the PCA
support group”
• “We try to live in the moment”
• Counselling helped
• It helps to be open about it and to laugh
Please feel free to make any additional
comments on the above to us via any of the
usual addresses.
• Coming to London could be hard
• Carers-only group for people with more
advanced PCA
How would I know, what can I do?
A new guide for carers which provides advice
on how to help with pain and distress in
people with dementia, has been published
by the National Council for Palliative Care [
NCPC]as part of the Prime Minister’s Dementia
Challenge.
‘How would I know’ offers a range of top
tips to help carers and health and care
professionals identify whether someone with
dementia may be in pain or distress, advice
on what may be causing this and a range of
possible solutions. It follows on from NCPC’s
2011 publication, Difficult Conversations for
dementia, which provides advice on how to
talk to people with dementia about their end of
life wishes.
More than 35 million people worldwide and
670,000 people in England have dementia,
with the number expected to double in the
next 30 years. An estimated twenty one million
people in our country know a close friend or
family member with dementia. One in three
people aged over 65 will have dementia by
the time they die. And as life expectancy
increases, more and more people will be
affected.
Simon Chapman, Director of Policy and
Parliamentary Affairs at the National Council
for Palliative Care said:
“When people with advanced dementia
experience pain or distress they may behave
in ways that people caring for them find
difficult to cope with, and also find it hard to
say what is troubling them. This is why it is so
important to know how to spot signs of pain or
distress and what can be done to help them.
With almost half of us having a close friend
or family member with dementia we really
hope that this new guide provides valuable
assistance.”
Alistair Burns, the National Clinical Director for
Dementia said:
“Too often pain or distress in people with
dementia may be overlooked or viewed as
an unavoidable part of their illness rather
than something that can be alleviated. This
excellent new guide from the National Council
for Palliative Care will be incredibly helpful
in helping people to better understand the
realities of living with and caring for somebody
with dementia”.
You can download the leaflet from http://
www.ncpc.org.uk/sites/default/files/How_
Would_I_know.pdf
Alternatively it is available to buy from shop.
ncpc.org.uk
8
minutes
PCA SUPPORT GROUP MEETING MINUTES
Fri 31.3.2014 UCL WILKINS ROOM
Venue and Attendees
where only one number is needed, simply
repeat it in all 3 slots. There are a range of
buttons and ID disks that can be activated
in an emergency.
55 people attended including 7 visitors via Skype
from the UK and the USA. There were 8 first
time members: it was lovely to meet you all, we
hope you felt at home and look forward to you
joining us again. Our thanks, as ever, to UCL for
allowing us to use this secure en suite facility,
where members and carers can feel at ease.
Congratulations to Tim and Kier on gaining their
doctorates.
Minutes for Andrew Palmer’s talk on support
aids on behalf of Action for blind People.
1.
3.
4.
Smart phones allow people to ask the
phone to dial a specific person. The mobile
repeats the name and then dials. These
are not available at the center because
they are commercially available. There is a
problem with small keys.
6.
Tone Call. Is a free service from BT. It gives
a flashing, vibrating audio response. ABP
do advise a fixed phone, since a cordless
phone is dependent on the electricity
supply. A smart phone is available with
raised dots to help the user to locate
machines around the house. Can one
buy a fixed phone which will dial when
voice operated? Andrew to research this.
Making the choice between options is
stressful: PCA people and carers need to
simplify options as much as possible.
7.
The RNIB Helpline number is 03031239999:
a data base can be accessed which
enables shared advice. This is a local
number but it is not free. Callers can use
ring-back however.Alternatively email
helpline@rnib.org.uk
8.
Markers for identifying clothes. A colour
detector is available. Some people use
different perfumes instead. Slade buttons
e.g. triangle, hexagon, square shapes can
be fixed to clothes but need to be “read”
flat.
9.
White sticks. A strap for these is available
from specialist walking stick shops to
allow them to be hung up on chair backs
etc., or to allow the user to work “hands
free” without putting the stick down.
Occupational therapists will fit a stick to the
individual as will specialist shops above. A
folding stick, even for the partially sighted,
can be kept in bags and only used to alert
traffic or busy pavement users to your sight
needs.
The star of this presentation was
undoubtedly Andrew’s guide dog Wicks- a
gorgeous black Labrador-retriever. Andrew
himself copes with a degenerative eye
condition: he presented without notes the
various ABP aides to partial sight loss via
questions from the floor. As was pointed
out, PCA people have the added difficulty
of finding learning new skills increasingly
difficult. The use of aids is so often a
matter of creative adaptation by carers to
support the quality of independent life for
as long as possible.
2.
5.
The Action for Blind People Resource
Center and Shop, close to St. Pancras and
Euston Stations, is open Monday to Friday
9.30 – 5pm but closes 4pm Wednesdays.
They will signpost customers wishing to
visit and demonstrate goods.
Questions about Clocks for the Blind.
Comminiclock is cube shaped and battery
or mains operated. It is automatically radio
controlled and is operated by a single
button on top to speak time and date: a
familiar voice can be set. Reminders for
medication times/appointments and a
wake-up call can also be set. Altogether
20 speaking clocks are available, costing
from £8 for a key ring clock and rising
to £38. Two prices are quoted in the
catalogue, since the Blind are exempted
from VAT.
Is there a dial by picture phone? There is
a speed dial system for up to 3 people:
9
minutes cont’
10. Disabled Blue Badge parking and Taxi
Card. You must register. A Fact Sheet is
available via the PCA website. Taxi Card
is local to your area and costs/distances
allowed vary.
11.
Eye Pal Reader. From Human Care.com is
a new, easy-to-use device which reads out
loud anything from letters to prescriptions
or invoices. It costs £1,700.
After Lunch discussion Groups.
These aimed to share experiences in 2 areas.
“Seeing What They See” is a joint initiative
between Brunel University and UCL to devise
educational programmes and aids for those with
visual problems as a result of dementia. They are
seeking the experiences of PCA people and their
carers as to what they would most like help with.
Diagnosis Adjustment. Please see the article
in this newsletter which summarises the small
group discussions we had on the subject of
coping with a diagnosis of PCA.
Celia Heath April 2014
DISCLAIMER: The information contained on
our website, in our newsletters and at support
group meetings is for information purposes only.
You assume full responsibility and risk for the
appropriate use of the information contained
herein and attendance at any support group
meetings.
10