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. We hope that the content of
the newsletter is of interest to all who read
it; however we are 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 us have any suggestions regarding the
format of the newsletter and indeed any
contributions you wish to make.
This newsletter can be produced in a font
and format which people with PCA may
find easier to read. Please let Jill Walton
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 continue to make use of
the ‘Articles for the Blind – Free Postage
Scheme’ and assume that newsletters
are successfully reaching the intended
recipients! Having access to this scheme
makes a considerable saving to the
postage costs incurred by the MEF, and
may we please remind you that if you are
able to receive the newsletter electronically,
we are very happy to provide it via this
means.
Newsletter Issue 22, May 2015
In the January newsletter, we described
the ‘raising awareness’ event which took
place in the House of Lords at the end
of 2014. This event was a support group
led initiative to raise awareness of young
onset dementia, and PCA in particular, with
Baroness Sally Greengross (crossbench
(independent) member of the House of Lords
and co-chair of the All-Party Parliamentary
Group on dementia) and Professor Nick Fox
(director of the Dementia Research Centre,
UCL) welcoming an invited list of over 130
guests on our behalf, including support
group members, MPs, Peers and a range
of professionals from across the social care
and charity sectors. The primary objective
of the event was to have key players leave
with an understanding that dementia is not
only about memory loss and that it affects
younger people too.
We are delighted to share news of new
and strengthened relationships with key
partners as ongoing outcomes of this event.
Examples include a new relationship with
the Royal College of Speech and Language
Therapists that has resulted in our Primary
Progressive Aphasia (PPA) support group
members featuring in their recently launched
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’
educational/training video. Tim Shakespeare
was able to make contact with groups
representing opticians through the event,
including representatives from the training
and research departments of the College
of Optometrists (with whom he is working
to improve understanding of PCA) and
from Specsavers (who have commissioned
an article on PCA from the UCL team for
their continuing professional development
journal). We also have a support group
member working alongside the Public
Affairs and Campaigns Manager at Relate.
Visit https://www.guidedogs.org.uk/
services/my-guide for more information
about the scheme.
In addition to these developments we are
excited that further to his visit to the March
PCA support group meeting, we have had
further engagement with Rob Harris, Guide
Dogs London Engagement Manager, with
regard to the possibility of people with PCA
accessing the nationwide ‘My Guide’ service
Michael Bowen, Director of Research,
College of Optometrists. See newsletter
article in this edition for more information
about ongoing relevant research.
May I take this opportunity to invite you to
the forthcoming full support group meeting
on June 19 2015. The venue for this meeting
is Wilkins Haldane Room which is located in
the Wilkins Building, UCL, Gower St, London
WC1E 6BT. The meeting is scheduled from
11am -2pm, with coffee available from
10.30am and lunch provided.
We are expecting 2 guest speakers at this
meeting;
Nada Savitch, Innovations in Dementia.
Innovations in Dementia is a community
interest company that works nationally with
people with dementia, partner organisations
and professionals with the aim of
developing and testing projects that will
enhance the lives of people with dementia.
‘My Guide’ is a service provided by Guide
Dogs to support people who are blind
or partially sighted to get out and about
anddo the things they want to do. There
are three strands to the service:
Visit http://www.innovationsindementia.org.
uk/ for more information
• My Guide Partnership
Someone who is blind or partially sighted
is matched with a trained volunteer, so that
they can reach their goals. Guide Dogs also
works together with other charities around
the UK to provide the My Guide service.
I look forward to seeing you at this meeting
or indeed being in contact with you in
whatever capacity is most appropriate.
Jill Walton
• My Guide Assist
This training can be applied in a range of
ways, such as supporting a friend or family
member with sight loss, helping at a specific
event such as a sporting event or just as
needed in daily life.
• My Guide Open for Business
The service can work with businesses and
organisations to tailor accessibility training
for their staff, enabling staff to effectively
serve customers who are visually impaired.
If plans develop as we hope, we look
forward to working with the service
providers to supply PCA specific training
input, thus enabling maximum benefit to
all concerned. We are in very early stages
of discussion but will keep you updated on
developments as they progress.
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future meetings
Future Meetings
Berkshire Regional Support Group Mtg:
Dates to be confirmed. Berkshire
regional meetings are coordinated by
Helen Shepherd. Please email Helen on
Helen@shepherdcharles.com for more
information. These meetings are held at
Barkham COAMHS, Wokingham Hospital.
These meetings are organised in
conjunction with the ‘Young People With
Dementia’ Berkshire West group.
UCL London Support Group
Meetings:
June 19 2015 The venue for this meeting
is Wilkins Haldane Room which is located
in the Wilkins Building, UCL, Gower St,
London WC1E 6BT. The meeting is
scheduled from 11am-2pm, with coffee
available from 10.30am and lunch
provided.
Hertfordshire Regional Support Group
Mtg:
Date to be confirmed. Hertfordshire
regional meetings are coordinated
by Di Garfield. Please contact Di on
myrtleellisfund@outlook.com for more
information.
Details of forthcoming meetings will be
confirmed once university room
allocations for the 2015-16 academic
year are allocated. Details will be posted
initially at http://www.ucl.ac.uk/drc/
pcasupport/meetings and circulated in
due course.
Kent Regional Support Group Meeting:
Dates to be confirmed. Kent regional
meetings are coordinated by Betty
Fernee. Please contact Betty on
betfernee@aol.com for more information.
The minutes of the UCL meetings are
published at the back of the newsletter.
Regional meetings are now taking place
in Oxfordshire, Berkshire, Cambridge,
Chichester, Kent and Hertfordshire. There
will also be an inaugural affiliated
meeting in Scotland, when on June 19 we
will be joined by a group in close to
Edinburgh who we hope will be able to
watch the meeting via a live video link,
and interact via skype instant text
messaging.
Chichester regional meetings:
Dates set until Dec 2015
Chichester regional meetings are
coordinated by Fiona Chabaane. Please
contact Fiona on or fchaabane@hotmail.
co.uk for more information.
Please contact Jill for more information
about any of these meetings.
Disclaimer:
Please note that you assume full
responsibility and risk when attending
support group meetings, and also in
the use of the information contained on
our website, in our newsletters and at
support group meetings.
Regional Meetings
Regional meetings provide an informal
opportunity to meet other people
affected by PCA.
Oxford Regional PCA Support Group
Meeting: Dates to be confirmed.
Oxfordshire/Central regional meetings
are coordinated by Martina Wise. Please
contact Martina on mrsmartinawise@
gmail.com for more information. The
venue for these meetings is at the home
of Martina Wise: in Blewbury, Oxfordshire.
These are informal social gatherings for
people affected by PCA. Please contact
Martina by email or mrsmartinawise@
gmail.com or 07958 668 035.
3
directions
Directions for forthcoming UCL meetings
Wilkins Main/Front Quadrangle, University College London, Gower Street, London WC1E 6BT
Underground
Rail Travel
The closest underground stations to UCL are
Euston Square on the Circle, Metropolitan and
Hammersmith and City Lines, Goodge Street
on the Northern Line and Warren Street on the
Northern and Victoria Lines.
London Underground Infoline: 020 7222 1234.
Disabled Persons Railcard scheme. A person
is eligible for the scheme either as a result of
being registered as having a visual impairment
or by virtue of being in receipt of attendance
allowance or disability living allowance/personal
independence payment. The railcard entitles
the holder and a friend to 1/3 off train fares.
Passenger assistance is also available to rail
users. Visit www.disabledpersons-railcard.co.uk
London Underground - Did you know that
you can ring London Underground Customer
Services on 0845 330 9880 the day before
you are due to use a service? They arrange
for someone to meet you in the entrance area
of the station at which your journey begins,
accompany you down to the platform and onto
your train. They then radio ahead to an official
at the relevant station to assist with any required
platform changes or take you up to ground level.
Disabled Persons Railcard scheme. A person
is eligible for the scheme either as a result of
being registered as having a visual impairment
or by virtue of being in receipt of attendance
allowance or disability living allowance/personal
independence payment. The railcard entitles
the holder and a friend to 1/3 off train fares.
Passenger assistance is also available to rail
users. Visit www.disabledpersons-railcard.co.uk
Buses
UCL’s Gower Street site is served by many
Transport for London bus routes. Buses travelling
from north to south stop in Gower Street,
immediately outside UCL’s main gate, while those
travelling from south to north stop outside Warren
Street station, about five minutes’ walk from UCL.
Services to these stops include route numbers:
10, 14, 24, 29, 73, 134, 390.
London Buses Infoline: 020 7222 1234
Parking
UCL Helpline 020 7974 4651 or 020 7974 4655
(Staffed Monday -Friday 9.00 am to 5.00pm)
We are very conscious that travelling to and
around London can seem a daunting prospect.
Be aware that pre-booked travel is generally
cheaper than tickets purchased on the day
and that the Myrtle Ellis Fund provides help
with travel costs where required. Contact Jill
for further details.
4
visual impairment & dementia Summit
The College of Optometrists: Visual Impairment and
Dementia Summit
The College of Optometrists hosted a Visual Impairment and Dementia
Summit in February 2015 to generate ideas on how to turn the findings from
research into recommendations that will improve lives.
“Research projects - such as the College’s
PrOVIDe study (Prevalence Of Visual Impairment
in people with Dementia), which was funded
by the National Institute for Health Research
- are already producing evidence that relate
to both visual impairment and dementia, and
we thought it was very much time to organise
something that would bring together past work
and future plans in these two areas.”
The event, which was co-hosted by Thomas
Pocklington Trust and the Alzheimer’s Society,
shared information about the most recent
research projects that have investigated
aspects of dementia and vision, and the
impact of one on the other. The event, which
was co-hosted by Thomas Pocklington Trust
and the Alzheimer’s Society, shared information
about the most recent research projects that
have investigated aspects of dementia and
vision, and the impact of one on the other. It
also used the two Priority Setting Partnerships
exercises (PSPs) previously undertaken in
each area by the James Lind Alliance (JLA)
and explored which of those priorities are
most relevant and important to people with
concurrent dementia and visual impairment or
sight loss.
The risks of developing either dementia or
visual impairment increase with age so a large
proportion of people with dementia could
potentially also be visually impaired. The event
explored the overlapping research priorities and
identified several new research questions and
directions for future work.
Michael Bowen, Director of Research at the
College who is due to speak at the next PCA
Support Group meeting on 19th June 2015, said:
“With the older population growing, it is very
important to bring these two research fields
together, because we believe great progress
can be made in directing research resources to
the right places.
5
balance problems with pca
“Am I the right way up?” Balance problems in
posterior cortical atrophy
We all know that people with PCA have profound
visual difficulties in seeing what and where things
are, whilst demonstrating relatively preserved
memory and insight. Most previous studies of
PCA have understandably focused on these visual
problems, but our recent work on PCA has also
revealed many people experience a disordered
sense of balance (exemplified by one person with
PCA’s question “Am I the right way up?”).
of these problems and their impact and we will
continue to update members of progress via the
group’s, newsletters, Facebook, and website.
Box 1. Quotes from carers participating in a
PCA Support Group carers’ meeting discussion
about a new document describing PCA
symptoms (UCL; September 2013)
• [Relative 1] “What do you think
about [adding in] something about
proprioception… – so where you are in
space; not just where other things are but
where your body is in space – because that
was again quite marked [in my mother-inlaw].” [Relative 2] “[She asked] the question
‘Am I the right way up?’, which is comical
but actually it’s quite distressing I think.”
The Alzheimer’s Society have now agreed to
provide nearly £300,000 funding for a 3-year
project to investigate these experiences. This
project aims to characterize the nature and extent
of balance problems in PCA and typical AD,
establish their frequency and impact, and identify
the balance deficits and brain mechanisms
underlying these symptoms. Thirty people with
PCA, 20 people with typical Alzheimer’s disease
(AD) and 20 age-matched healthy control
participants will each complete background
tests of symptoms, thinking abilities, sensory
functions and brain scanning. Participants
will then complete a series of 4 experiments
exploring how standing balance (measured by
special 3D motion cameras) is affected by what
we see (visual cues like moving dots and oriented
lines) and our inner ear balance sense (through
electrical stimulation). Our hypothesis is that the
disconcerting experiences described by people
with PCA arise from a mis-combination of visual
and balance senses.
• “I just wanted to say something about
posture because I also think that’s a bit of a
problem. [My former partner who has PCA]
doesn’t just shuffle but he’s leaning to one
side… and it’s just very, very difficult, and
you can’t get him to stand up straight, and
it also means helping him to get a jacket or
coat on is that much more difficult.”
Description by someone with PCA who
experienced room tilt illusion (from Crutch et
al., Neurocase, 2011).
“When I got downstairs the whole of the room
was upside down, which was actually very
scary but I got over that when I realized it
was OK if you know what I mean. But it was
completely reversed, the bottom was on the
top and the top was on the bottom. Do you
see what I mean? It was most peculiar.”
The project will raise awareness of balance
deficits in dementia which currently are
poorly recognized, understood or treated. It
will also reveal how balance problems may
contribute directly or indirectly to a host of
complex problems including reduced mobility,
falls, challenging behaviours (e.g. delusions,
hallucinations, aggression) and reduced quality of
life and activities in many people with other forms
of dementia.
For more information see:
- 18th March 2011: Talk by Diego Kaski and
Natalie Ryan on dizziness. See www.ucl.ac.uk/
drc/pcasupport/newsletter/newsletterpdfs/pca_
newsletter_jun2011.pdf
- 26th October 2012: Presentation by Natalie
Ryan on unusual symptoms including balance
problems (listen and view slides at www.youtube.
com/watch?v=tvP_EsS5jyI
The project brings together some of the UCL
PCA team (Seb Crutch, Keir Yong, Aida Suarez
Gonzalez, Jonathan Schott) with balance experts
(Brian Day, Amy Peters), ‘dizzy doctor’ Diego
Kaski, and film maker and artist Simon Ball.
This project was inspired by and based on the
experiences of and descriptions from people with
PCA and their friends and relatives participating
in our research or support groups (see Box 1). This
ongoing dialogue has shaped our understanding
- 20th September 2013: Discussion between
Sebastian Crutch and PCA carers regarding
a draft document describing the ‘Stages of
PCA’ (listen and view slides at http://www.ucl.
ac.uk/drc/pcasupport/meetings/meeting_
recordings/#sep2013
6
seeking advisory committee members
Seeking Advisory
Committee members!
We are looking for interested parties to join the
advisory committee board for the research project,
‘Seeing What They See’ – here is some information about
the study and the committee:
3 Coping Strategies: for this part, we are
conducting in-depth interviews with
participants and their carers at home to get
an idea of the emotional, physical and social
impact of the diagnosis and the particular
challenges experienced day to day
The project is led by Sebastian Crutch at UCL
with collaborators from Brunel University
London, Moorfields Eye Hospital and the London
School of Hygiene and Tropical Medicine.
It’s a four year project funded by the ESRC
(Economic and Social Research Council) and
National Institute for Health Research (NIHR)
looking at the impact of visual impairment due
to dementia on everyday life and activities.
Overall, we aim to develop some home-based
interventions that will help people who are
affected by dementia-related visual impairment,
to manage better at home. The project largely
relies on the valuable insights that people
with PCA can offer from describing their visual
experiences.
Current members of our advisory committee
include representatives from the Thomas
Pocklington Trust and the College of
Occupational Therapists. The purpose of the
committee is to provide oversight and advice
in the running of the project to ensure the
results are as useful and relevant as possible.
Following our first meeting in March of this
year it was suggested that the input of, and
the opportunity to consult with a representative
of people living with PCA, typical Alzheimer’s
disease and/or their carers, would be
invaluable. We plan to meet twice a year
with additional meetings to be scheduled
where necessary. Our next meeting will be on
Wednesday 14 October, 2015, between 11am
and 1pm.
The project is divided into three parts:
1 Neuropsychological testing: these help us
to build a comprehensive picture of the
particular patterns of visual impairment
in those with dementia-related visual
impairment
2 Pedestrian Accessibility and Movement
Environment Laboratory (PAMELA): here
we are looking at ways participants move
around and carry out day-to-day tasks,
such as reaching for a cup or navigating
around a simulated environment. We hope to
develop helpful visual cues for use in physical
interaction.
If you are interested in being a representative
on the board of the committee please express
your interest to Jill Walton (jill.walton@ucl.
ac.uk; tel: 07592 540 555) who will be happy to
discuss the next steps.
Many thanks for reading!
Emma Harding and Amelia Carton,
Psychology Research Assistants, Dementia
Research Centre
7
dementia friends
Dementia Friends
Jeff and Sue Solomons are regular attenders
of the London support group meetings.
As dementia awareness week approaches
[May 18-24], Jeff describes the Dementia
Friends national initiative that is being run
by Alzheimer’s Society. It is the biggest ever initiative to change people’s perceptions of dementia.
It aims to transform the way the nation thinks, talks and acts about the condition. It’s funded by the
government, and aims to improve people’s understanding of dementia and its effects.
Alzheimer’s Society is working with lots of
volunteers and other organisations to achieve this
goal. Whether you attend a face-to-face session or
watch the online video, Dementia Friends is about
learning more about dementia and the small
ways you can help. From telling friends about the
Dementia Friends programme to visiting someone
you know living with dementia, every action
counts.
To date, businesses including Marks & Spencer,
Asda, Santander, Lloyds Pharmacy, easyJet,
Argos, Homebase and The Royal Bank of Scotland
have encouraged their staff to become Dementia
Friends. They join schools, the police, the fire
service and transport providers in a concerted
effort to build a dementia-friendly society and
support people with the condition to take part in
their local community.
People with dementia sometimes need a helping
hand to go about their daily lives and feel included
in their local community. Dementia Friends is giving
people an understanding of dementia and the
small things that they can do that could make a
difference to people living with dementia.
Celebrities including Ruth Jones, Alesha Dixon,
Ruth Langsford, Eamonn Holmes and Pixie Lott
have also become Dementia Friends and helped
front a TV advert urging the public to do the same.
The Cabinet, the leader of the opposition, Ed
Miliband, and more than 100 MPs have taken part
in Information Sessions too.
With nearly two thirds of people with dementia
experiencing loneliness and almost half reporting
to have lost friends after their diagnosis, Dementia
Friends was launched in February 2013 to tackle
the stigma and lack of understanding which
means that many people with the condition can
face social exclusion. The initiative, which is jointly
run with Public Health England and funded by
the Cabinet Office and Department of Health,
combines face to face Information Sessions and
online videos to help people learn more about
dementia and the small things they can do to
make a difference.
As part of a long-term commitment to help more
communities and businesses become dementiafriendly, Alzheimer’s Society has set an ambitious
target of creating four million Dementia Friends
by 2020.
Dementia Friends
goes global
More than eighty governments from around
the world came together at a World Health
Organisation (WHO) summit in Geneva earlier
this month to discuss how to improve dementia
care and research around the globe. WHO
Chair Dr Margaret Chan in her speech to the
conference praised the Dementia Friends
programme. Jeremy Hughes, Chief Executive of
Alzheimer’s Society, pledged that we would work
with charities and governments to help establish
Dementia Friends programmes around the world.
Dementia Friends has harnessed the energy of
individuals, communities and organisations to
challenge stigma around dementia across the
whole of society. There are currently more than 1
million Dementia Friends 9,000 Dementia Friends
Champions, volunteers who have dedicated an
estimated 100,000 hours of time to creating grass
roots change in their communities by running
Dementia Friends Information Sessions.
continued overleaf
8
alzheimer’s society magazine
Become a Dementia Friends
Champion
What are the requirements for becoming a
Dementia Friends Champion?
• Be a good communicator and speak
objectively about dementia
• Enjoy talking to groups of people
• Have access to the internet and be willing to
record the number of Friends you reach by the
website
• Keen to set up Information Sessions in
workplaces and your local community
• Enthusiastic about Dementia Friends
• Voluntarily attend a whole day training
Session
For full information about Dementia Friends go
to: https://www.dementiafriends.org.uk/home or
simply Google Dementia Friends
To be a Dementia Friends Champion you
need to:
Jeff Solomons
(Carer & Dementia Friend)
By working together, it is possible to create
dementia friendly communities
What is a Dementia Friends Champion?
A Dementia Friends Champion is a volunteer
who tells people about dementia, how it affects
people’s day-to-day lives, and how they can
make a positive difference to people living with
dementia in their community. It’s easy to get
involved if you meet our eligibility criteria.
• Genuinely have the time to run Dementia
Friends Information Sessions and reach
around 100 people
• Be over 18 years old
9
a season to remember
“A Season to Remember”.
Bruce Karlston’s mother visited a PCA support group meeting during her
recent trip to the UK. Upon returning home to South Africa, her son has
embraced the fundraising mantle and describes some of the motivating
factors behind his forthcoming efforts to raise money for the Myrtle Ellis Fund.
At the age of just 53, my mother was
diagnosed with a rare form of early-onset
dementia known as PCA (posterior cortical
atrophy). With no awareness or support in her
native South Africa, she has found the support
group funded by the Myrtle Ellis Fund (MEF)
immensely helpful.
Although the group is run from University
College London, it live-streams meetings on
YouTube and makes a range of resources
available online. Another PCA-affected family
runs the Facebook group and this provides a
global lifeline to many.
All money raised goes directly to the charity
that administers the Myrtle Ellis Fund - the
National Brain Appeal.
A BIG thanks in advance for your support!
Please visit http://www.ucl.ac.uk/drc/
pcasupport/fundraising or https://www.
justgiving.com/aseason2remember/
for more information.
I’m looking forward to a memorable season
on the bike and have set out to complete a
total of 477 km over three cycling challenges,
culminating in the prestigious Tour de France
London stage:
1. 128 km tour of Cambridgeshire Gran Fondo
Race - 7th June 2015
2.161 km Prudential Ride London - Team
Challenge - 2nd August 2015
3.188 km L’Etape London by Tour de France 27th September 2015
10
your contributions
Your Contributions:
Lynne Ramsay is a support group member who has asked that we
circulate this news:
For the first time ever, the World Health
Organisation (WHO) has taken a position
on clinical trial results reporting, and it’s a
very strong position! The WHO now says
that researchers have a clear ethical duty to
publicly report the results of all clinical trials.
Significantly, the WHO has stressed the need
to make results from previously hidden trials
available. Ben Goldacre said, “This is a very
positive, clear statement from WHO, and it
is very welcome.” Ilaria Passarani from the
European Consumer Organisation BEUC called
it “a landmark move for consumers.” It is the
position we and hundreds of you wrote to the
WHO last autumn urging them to adopt. Well
done everyone!
You can read more about the WHO’s statement
and responses to it on the AllTrials website, in
Science and The Verge and from Reuters.
The WHO has called on organisations and
governments to now ensure that all trials get
reported. Ben Goldacre has set out some
practical suggestions on how to make this
happen.
Please help share this exciting news. Can
you write about it for a newspaper, journal,
newsletter or blog? Make sure to share it on
Twitter and Facebook. Here’s a tweet you can
use: Great news: The @WHO has said that
researchers should publicly report results from
all clinical trials. http://bit.ly/1CUd1v6 #AllTrials
Teresa Jeffery writes: David (who has PCA) and I have been members
of the support group for some time.
We came to our first meeting on 13 November
2009. David is now at a fairly advanced stage
of PCA. I would say probably around stage 6.
As things progress it is becoming increasingly
difficult to attend the meetings. I do not think
we are alone in this as several other previous
regular attendees seem to have also ‘fallen
by the wayside’. I find myself wondering how
these people, are getting on; the people who
were so friendly and welcoming when we
nervously turned up for the first time.
In the newsletter from David’s old university, in
common with many others, they have a section
with updates from the old alumni. I wonder
if we could perhaps have something similar.
Also, I wonder if there is an untapped resource
of tips and work around that those of us caring
for someone with the later stages have devised
and may be useful to others but this knowledge
is not being shared because attendance at the
meetings becomes too difficult.
What do others think?
Please send you thoughts or responses to Jill.
walton@ucl.ac.uk
Jan Whalen has had PCA associated problems with her vision, since 1999,
and has provided the following suggestions which are intended to help
people with PCA improve confidence and retain normal capabilities within
familiar settings of their home.
• Add more LIGHTING and wattage (use
motion sensors or timers for automatic
turning on of lights, apply rope lighting along
pathways and under cabinets, add brighter
LED bulbs, pendent lights)
• Provide COLOR CONTRAST for focusing
sight (mark items such as faucet handles,
appliance “on” buttons; door handles and
knobs with bright red or pink coloured tape,
nail polish or marker pens)
11
your contributions cont’
• Install HANDRAILS & GRAB BARS (at steps or
thresholds –anywhere the elevation changes,
around the tub and bath areas)
• Obtain FREE DIRECTORY ASSISTANCE from
the local phone company (provided as a
service to the blind)
• Request HANDICAPPED PLATES & PLACARD
for parking (in places to minimize distances
walked in areas of unfamiliarity)
• Procure a BOOK READER or a simple
playback device for audio books
• Procure TALKING ITEMS for ease of
discovering daily information (clock or watch
that speaks the time, recorded message
buttons such as “Go Talk”)
• Install a telephone VOICE DIALER where calls
are initiated by voice activation (names are
assigned to phone numbers so no dialing is
necessary)
• Consider changing to plates and bowls with
perpendicular sides and using one utensil at
meals (in our case a SPORK always placed
on the right side of the dish)
Add EASY TO USE items such as a three button
TV remote, on/off one button radio & soap
pods for the dishwasher/washing
12
minutes
PCA Support Group - Minutes for meeting 27th
March 2015 at UCL
Venue, Attendees and Update
in engagement with Super Highway
builders, the Cycling Association and
the Metropolitan Police. In spite of some
opposition from campaigning cyclists, it
is hoped that a similar action will start in
non-metropolitan areas.
Our ongoing thanks to UCL for the use of their
marquee in the front quadrangle. The layout
allows the maximum number of people to see
and hear the speaker. 55 people attended,
amongst them, 2 visitors from Germany and 8
further attendees via Skype. We hope you found
our meeting helpful and will join us on a regular
basis.
1.6 Further aims are to prioritise segregated
areas rather than shared space and the
retention of kerbs.
There is no charge for PCA membership, but
members were invited to support the sale of
hand –made glass pendants from a designer
member to raise funds.
2.1 Questions from the floor stressed the need
for EU regulations re sound from electric
vehicles.
The recent publicity meeting in the House of
Lords was very successful in airing concerns and
2.3 The need for separate bike/pedestrian
paths was strongly emphasised.
raising awareness.
2.4 Response: A literature campaign to
educate cyclists is underway.
2.2 The use of voice plus bell is desirable.
Talk: Rob Harris (Guide Dogs London
Engagement Manager) “The Cycleyes
Campaign”
Talk: Prof Seb Crutch updated the meeting on
the research project “Seeing what they see”.
1.1 Rob gave a short presentation of his
engagement with London’s cyclists under
the banner “Use your eyes for those who
can’t.” The new initiative, “My Guide”
reaches out via a training programme, to
the partially sighted aiming to re-establish
confidence and combat isolation.
3.1 The research is being run by Seb Crutch
and Keir Yong. It was stimulated by
concerns that homes and other spaces are
not set up optimally for visually impaired
people to move around.
3.2 “Seeing what they see” also involves
assessing the effect of visual problems on
quality of life (with social scientists from
Brunel University), taking a fresh look at the
eyes themselves in people with dementia
(with optometrists from Moorfields Hospital
and the Institute of Ophthalmology) and
working with engineers and architects.
1.2 There are 1700 bike journeys per day
(London Cyclist): pedestrians are often left
out of the debate, e.g. on Super Highways.
Blind/ partially-sighted pedestrians are at
risk from the sudden arrival of bike-riders
not following the rules, leaving some
people afraid to go out in some areas of
London.
1.3 Positive engagement is sought. Riders are
asked to be on the look-out for guide dogs
and people with white sticks about to cross
the road: they should be given priority.
1.4 Use of the bell is discussed. Riders should
not cycle round blind people without
warning and be aware that “bumping off”
the pavement can startle people.
3.3 Dementia related visual dysfunction is
poorly recognised and rarely researched.
Seb showed a video highlighting the
confusion between left and right and
difficulty in locating objects experienced by
many people with PCA..
3.4 The aims of the project are:
a) To deliver interventions in homes/care
homes to compensate for visual loss.
1.5 The “Wrist strap band campaign”
supported by the Evening Standard and on
TV sparked intense debate and resulted
b) To evaluate the quality of life and coping
strategies.
3.5 A preparatory study of 40 people with PCA,
13
minutes cont’
40 people with typical Alzheimer’s disease
and 40 healthy participants will:
(A) identify optimal conditions to
support visual skills by looking at lights,
colours and other cues. Some of these
experiements are based on the problems
reported by members of the PCA support
group e.g. problems in locating the toilet
in an all-white WCs points to the need for
contrasting colours.
(B) consider the role of visual problems
in problems such as hallucinations. Seb
gave the example of how such problems
can sometimes be due to faulty visual
interpretation e.g. one person who had
perceived snakes in their bedroom found
that these hallucinations vanished when
curtains with twisty designs were changed
curtains with a neutral tone.
(C) include studies and detailed interviews
in homes/care homes examining the
impact of visual problems on the wellbeing of both the person with PCA and the
people who help them.
3.6 Keir’s work has also looked at ways to
support independent reading in people
with PCA. Reading is the first difficulty
noticed by many people with PCA. Keir’s
research shows that the presentation of
a single word/pair of words on a screen
triggers greater accuracy of response
compared to normal paragraphs of text.
His research aims to develop a flexible
application parallel to the individual’s
speed of reaction.
3.7 Colour tags support perception. Some
enlarging may help but very large print is
not very easy to read. Spacing words out
allows time for reaction.
3.8 PCA people have fragmented vision of
pictures and cannot always put the pieces
together.
3.9 Opticians need to present one letter at a
time.
3.10 No research yet on the use of remote
control handsets. PCA however affects
the understanding of space by touch or in
the dark. It is important to remember that
PCA people no longer have the mental
overview or ‘internal visual imagery’ that
healthy people take for granted.
4.1 Group discussions on the problems of
PCA orientated sight impairment in public
places. Groups explored questions raised
by researchers concerning moving around
public spaces. New members had the
chance to meet with UCH Staff separatelywhich was well attended and much
appreciated. The following comments are
a sample of discussion from the research
groups.
4.2 What puts PCA people off from going out
in public places? The differing height of
kerbs which are generally not painted.
Escalators in tube/stations are not PCA
visually friendly. Exiting busses and taxis
becomes difficult. Contrasting colours and
labels on handles and rails would help.
4.3 Poor lighting leads to shadows and lack of
clarity.
4.4 Many PCA people fear their spatial
reactions are too slow for crowded spaces.
4.5 Moving about in streets and public
buildings is difficult because they are
monotone in colour. At home, differently
painted rooms provide visual clues.
4.6 Extendable dog leads cannot be seen.
4.7 Lightweight folding white canes can be
extended when crossing roads or using
stations. Some members felt canes were
a symbol of vulnerability and preferred
the use of armbands (like the red ones
symbolising deafness).
4.8 Coloured floor markings at main rail
stations is very good practice! Some
members take a roll of red duct tape to help
partners with orientation in hotel rooms.
4.9 Crowded lay-outs in restaurants, walking
into glass doors, disorientation caused by
bright lights and white paint are seen as
hazards in hotels and eateries.
Celia Heath April 2015.
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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.
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