posterior cortical atrophy
PCA SUPPORT GROUP
www.pcasupport.ucl.ac.uk
newsletter
Welcome to the [PCA] Support Group
Welcome to this September 2015 edition
of the PCA Support Group Newsletter. As
always, we hope that the content of the
newsletter is of interest to our members
but remain 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 23, Sept 2015
Behind the scenes here at UCL, significant
and ongoing effort is being dedicated to
securing and expanding the infrastructure
upon which the support group depends for
its ongoing function. With funding kindly
supported by the Myrtle Ellis Fund and a
plethora of your own fundraising efforts, we
are able to continue existing support group
activities as well as begin to look to new
and expanded provision. We are currently
in early stage negotiation with significant
funders with a view to establishing extended
regional networks and improved access
to information for our members. We will of
course update you in due course as these
exciting possibilities develop.
On a more scientific front, the Alzheimer’s
Association International Conference took
place in Washington USA, during July 2015,
with a number of UCL Dementia Research
Centre [DRC] colleagues attending and
contributing to that event. Please see Dr
Jon Schott’s contribution to this newsletter
for a summary of the ground-breaking PCA
specific research findings he was able to
share at the conference. These findings will
of course subsequently be published in the
medical press.
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’
May I take this opportunity to invite you to
the forthcoming full support group meeting
on Friday October 16 2015. The venue for
this meeting is Wilkins Haldane Room on the
UCL Gower St site, WC1E 6BT. The meeting
is scheduled from 11am -2pm, with coffee
available from 10.30am and lunch provided.
We are delighted to welcome Professor
Robert Howard, a consultant psychiatrist
and leading researcher, who will provide us
with a presentation entitled ‘The Psychiatry
of PCA’. Prof Howard has huge experience
of conducting rigorous, high quality clinical
trials and studies, all with a clear and
practical aim - providing powerful evidence
of what works and what doesn’t. He’s a
highly entertaining speaker who will gladly
welcome any questions you care to throw at
him.
In addition to the full support group meeting
listed above, and by request of support
group members, we also facilitate ‘carers
only’ meetings for the carers, family and
friends of people affected by PCA and other
rare dementia diagnoses. These meetings
aim to provide an environment whereby
sensitive discussions can take place within
the understanding of a professionally
facilitated peer group. The next ‘Carers
Meeting’ is scheduled for Nov 18 2015 and
further details are listed below.
I look forward to seeing you at either of
these meetings or indeed being in contact
with you in whatever capacity is most
appropriate.
Jill Walton
2
forthcoming support group mtgs
Future Meetings
Regional Meetings
Regional meetings provide an informal
opportunity to meet other people affected
by PCA. Regional meetings are now taking
place in Oxfordshire/Central regions,
Berkshire, Cambridge, Chichester, Kent and
Hertfordshire and Scotland.
UCL London PCA Full Support
Group Meetings:
Fri October 16 2015: Professor Robert
Howard, a consultant psychiatrist from Kings
College London will provide us with a
presentation entitled ‘ The Psychiatry of PCA’.
Oxford Regional PCA Support Group
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 currently under review, but they
are are informal social gatherings for people
affected by PCA. Please contact Martina by
email or mrsmartinawise@gmail.com
or 07958 668 035.
Berkshire Regional Support Group
Meeting: Tuesday November 24, 2.15pm4.14pm 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.
Hertfordshire Regional Support Group
Meeting: 9th September, 2015 Hertfordshire
regional meetings are coordinated
by Di Garfield. Please contact Di on
myrtleellisfund@outlook.com for more
information.
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.
Chichester Regional Support Group
Meeting: 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.
Fri February 5 2016: agenda tbc
Fri June 10 2016: agenda tbc
The venue for these meetings 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.
UCL London Carers Meetings:
In addition to the full support group
meetings listed above, and by request of
support group members, we also facilitate
‘carers only’ meetings for carers, family and
friends of people affected by a rare
dementia diagnosis. These meetings aim to
provide an environment whereby sensitive
discussions can take place within the
understanding of a professionally facilitated
peer group. The venue for these meetings is
the Front Quadrangle Events venue, which is
the white marquee type structure inside the
main university quadrangle at the Gower St
site, WC1N 6BT. The meetings run from 11am
until 2pm with coffee available from
10.30am and lunch provided.
Carer meetings are currently scheduled for :
November 18 2015
Dr Liz Sampson is a Senior Clinical Lecturer
at the Marie Curie Palliative Care Research
Department, Division of Psychiatry, University
College London and will join us to share her
expert knowledge and facilitate a discussion
on palliative and end of life care in
dementia.
July 7 2016: agenda tbc
Minutes: The minutes of the UCL meetings
are published at the back of the newsletter.
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
Seeking Advisory Committee members!
Seeking Advisory Committee members!
We are still looking for interested parties to join the
advisory committee board for the research project,
‘Seeing What They See’
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 from 122pm on the 11th November in the large seminar
room at the DRC.
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.
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.
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
Many thanks for reading!
Emma Harding and Amelia Carton, Psychology
Research Assistants, Dementia Research Centre
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.
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
5
news and fundraising
Alumni group
5 people have responded to say that they would
indeed like to be part of such a group. Having
discussed with Teresa, I have created an ‘alumni
group’ with a shared group email address.
Consent to be included in the group is required,
and I can provide the appropriate consent
document to anyone who may be interested. We
will review the activity of the group over coming
months and hope that
In a previous newsletter, Teresa Jeffery
suggested initiating an ‘alumni’ type network
of support group members who may be finding it
increasingly difficult to get to meetings, but who
would value contact with other people who are
caring for someone in the later stages of PCA
and have a shared understanding but also an
untapped resource of tips that may be useful
to others.
Fundraising
Thank you to everyone who has made donations
to the fund, and do keep an eye on the website
http://www.ucl.ac.uk/drc/pcasupport/fundraising
for ongoing fundraising initiatives and efforts!
Support group activities are reliant upon the
funding generously supported by the Myrtle
Ellis Fund and a plethora of your own fundraising
efforts, for which we are extremely grateful.
The second annual global virtual quiz
Toby Lancaster’s Alps
Challenge
As this will be a personal challenge for myself and
the team I also wanted to use the opportunity to
raise awareness and money for a charity.’
This summer Toby led a small group to climb
2 peaks over 3 days in the Ecrins region of the
Alps. Before he left, he explained:
The reason that Toby has chosen to raise funds for
the Myrtle Ellis Fund is primarily because one of his
neighbours is suffering from PCA.
‘As some of you may know I have already had
some experience of climbing in the Alps, Sierra
Nevada and Mongolia but this will be first time that
I have organised a team and am using this as my
Extended Project at Hills Rd Sixth Form College.
Despite debilitating altitude sickness Toby and his
team achieved a tremendous result on behalf of
the support group, and we are sincerely grateful to
him for initiating the event.
6
fundraising cont’
Dave Banthorpe and Joshua Cornwell get on their
bikes for PCA!
July 2016 will see Dave Banthorpe cycling the
London to Paris route to raise money for the
Myrtle Ellis Fund. Dave’s mother in law has a
diagnosis of PCA and some of you will have
met his wife Helen at a recent support group
meeting, selling handmade glass hearts to raise
funds too. Read more about Dave’s efforts and
support him at https://www.justgiving.com/
Dave-Banthorpe1/?utm_source=Facebook&utm_
medium=fundraisingpage&utm_content=DaveBanthorpe1&utm_campaign=pfp-share
Meanwhile, in August 2015 Joshua Cornwell,
whose grandmother has PCA will be embracing
a 100 mile Charity Bike Ride from Sawtry to
Felixstowe to raise money for PCA. If you would
like to have a look at how his training is going,
visit Joshua’s facebook site: facebook.com/
Joshuafundraiser
or his just giving page at www.justgiving.com/
joshuasfundraiser/
Christmas cards
printing? [we can of course acknowledge
sponsorship.]
It seems unnaturally early to mention the sale
of Christmas cards, but owing to the sell-out
success of Paul Bulmer’s bespoke designs last
year, we are planning to offer these fundraising
cards again. With additional designs available
this year, we are currently co-ordinating plans
for their sale.
2 Is anyone willing to take on the role of
managing orders [receiving payment and
coordinating postage ]?
If you are able to help with either of the above
please get in touch with Jill in the first instance
We look forward to exchanging festive greetings
on these extra special cards.’
We have 2 requests to make, both of which will
significantly assist us in our planning:
1 Does anyone within the group have
access to printing facilities which could
offer us discounted or ‘no charge’ costs for
7
International Conference
Alzheimer’s Association International Conference in
Washington: JULY 2015
Dr Jonathan Schott, Reader in Clinical Neurology, Dementia Research Centre, UCL, along with
several other members of the clinical and research team was present at the Alzheimer’s Association
International Conference in Washington July 2015 and has provided the following update in respect of
the presentation he gave at the event:
We are delighted to report that researchers at UCL
have made significant progress in understanding
some of the genetic factors that might influence
the development of PCA. To date, it is not clear why
some individuals develop PCA, as it is not thought
to run in families; and, as Alzheimer’s disease is
the commonest cause of PCA, why people with
PCA develop symptoms so much earlier than
people with more typical, memory-led, disease.
Several small studies published over the last few
years have provided conflicting evidence for a
role of the most common genetic risk factor for
although preliminary, analysis, they also found
three new genes that may subtly influence the
risk for developing the syndrome. It is important
to note that these findings – if replicated – do not
suggest that PCA is directly heritable, and there are
no implications for clinical testing.
AD, known as APOE E4, but due to the relative
rarity of PCA, it has been difficult to get a more
definitive answer. To investigate this further, Dr
Jonathan Schott and Professor Sebastian Crutch
formed an international consortium of experts
interested in PCA, from England, the USA, France,
Italy, Spain, the Netherlands, and Australia. By
pooling resources, they brought together DNA
samples from 302 individuals, by far the biggest
study of PCA done to date. Working closely with
Professor Simon Mead at UCL who helped in the
genetic analysis up of these individuals, they were
able to demonstrate that APOE E4 is a risk factor
for PCA, but is a weaker risk factor than for typical,
memory-led, Alzheimer’s disease. In an exciting,
Dr Schott presented this work at the Alzheimer’s
Association International Conference in
Washington, and it will shortly be submitted for
publication. Efforts are underway to collect further
DNA samples from patients with PCA, in an
attempt to confirm if these new genes are indeed
risk factors for PCA. We are very grateful to Nick
and Raena Frankel-Pollen who are raising money
to help with the analyses. If you would like more
information about this study, please contact Keir
Yong at keir.yong@ucl.ac.uk
8
British Medical Journal
The Importance of Dementia Support Groups
The following letter is a summarised version of the submitted on-line rapid response article which was
subsequently published as a letter in the BMJ on July 23 2015.
It forms part of our ongoing commitment to
promote awareness and understanding of the
unique challenges faced by people embracing
rarer diagnoses of dementia.
opportunity for one to one peer relationships that
are continued outside of formal meetings.
Robinson and colleagues refer to non-Alzheimer
diagnoses of dementia. These less typical
diagnoses pose complex problems for those
with the disease and for their families, friends,
and carers. When these forms of dementia affect
younger people the problems can be even more
challenging.
Directing patients and their families to such sources
of advice and support forms an important part of
the post diagnosis consultation. “Rare dementia
support” offers information, advice, and support
to people affected by frontotemporal dementia
(behavioural variant and primary progressive
aphasia), posterior cortical atrophy, familial
Alzheimer’s disease, and familial frontotemporal
dementia.
When asking the question: “What constitutes
best practice in early intervention?” we must
acknowledge that people living with a diagnosis
of dementia generally do so in the community,
Distinct from the personal and individual benefit
to group members, support groups also fulfil an
advocacy role on behalf of their members by
raising awareness and representing the needs of
supported by informal caregivers typically made up
of spouses, relatives, friends, and neighbours.
people within the group by contributing to debates
and discussions at a more strategic level.
Support groups have an important role to play in
offering people the opportunity to acknowledge
their diagnosis and its consequences alongside
peers in a similar position. Apart from the social
and emotional benefits of participating, disease
specific support groups enable the exchange of
valuable professional and personal information and
advice. They are also gateways to understanding
and sharing, enabling people to cope better and
for longer.
Jill Walton registered general nurse, Natalie
Ryan clinical research fellow, Sebastian Crutch
professorial research associate, Jonathan D Rohrer
honorary consultant neurologist, Nick Fox professor
of clinical neurology
Dementia Research Centre, Institute of Neurology,
London WC1N 3AR, UK
[Full response at: www.bmj.com/content/350/
bmj.h3029/rr-0. 1 Robinson L, Tang E, Taylor J-P.
Dementia: timely diagnosis and early intervention.
BMJ 2015;350:h3029. (16 June.) ]Cite this as: BMJ
2015;351:h3875 © BMJ Publishing Group Ltd 2015]
Support groups can extend to provide supportive
networks across telephone, internet, and social
media platforms, as well as providing the
9
other news
DEEP networks and the PCA support group
Nada Savatch, who works for Innovations in Dementia, presented the work
of DEEP (Dementia Engagement and Empowerment Project) at a recent PCA
support group meeting.
Hannah Golden explains how the main aim
of this project has been to increase the voice
of people with dementia so their opinions,
experiences and hopes can be heard. Her
organisation teamed up with the Joseph
Rowntree Foundation and Comic Relief to
start a project to provide links between small
community groups so they would gain power
in numbers. They started off with 12 regional
groups and have now expanded to around
60 – totalling around 1,200 individuals with
dementia. This way these combined groups
can have more influence over things that
affect them, such as policy and educating
professionals. People with dementia are
experts by experience and are the best
people to ask about what it is like living with
this condition! These groups have worked
on a variety of projects, such as advising
the House of Lords, providing more prediagnostic information and educating people
that dementia is not just about memory.
Some of the members have been involved
in making films, and using technology that
allows responding in real time to give quotes
about news events related to dementia; they
have also been advocating for a change in the
language the mainstream media use when
talking about dementia. The DEEP project
helped people to find something they want to
change, and join up to gain a greater influence
in making the change happen. It has been
noticeable how these groups have gained
confidence over time; DEEP has worked to
connect smaller groups and fill in geographical
gaps, but otherwise most of the ideas and
work have come from the groups themselves.
Our rare dementia support groups are looking
to get involved by perhaps making a short
film and producing some information booklets
detailing the personal journey to diagnosis and
life with a rarer diagnosis of dementia. If you’d
like to get involved please let Jill know at jill.
walton@ucl.ac.uk
Webinar link
Dr David Tang-Wai, a practitioner based in Toronto, Canada, who wrote the most widely used
current criteria defining PCA, features in this webinar entitled “Posterior Cortical Atrophy: Trying to
See What They Cannot” Listen to it here https://vimeo.com/134976973
Your contributions
Martina Wise wonders if Volvos new product, Lifepaint, can be helpfully put to use in ways which
help people with PCA. Lifepaint is a unique reflective safety spray. Invisible in normal light it glows
brightly when in the glare of headlights or other direct light source. See http://www.volvolifepaint.
com/ for more information about this product!
A question for our members… Is anyone aware of any digital assistance technology that might
make it easier for people with PCA to continue to read and play music? Maybe The Royal College of
Music or Royal Festival Hall etc.would have expertise they could share….?
10
minutes
PCA Support Group Minutes for Meeting at UCL
June 19 2015.
Our thanks to UCL for the further use of their
excellent facilities, which allow good visual
contact and lighting. The use of portable
mikes maximized the equally good acoustics.
Jill welcomed 59 attendees and on-line
contacts from the Scottish PCA support group,
Canada and America. Shona Lucitt from the
Alzheimer’s Society attended the meeting.
Her contacts are shona.lucitt@alzheimers.org.
uk or 07753 425158.
1.8 The main causes of VI are cataracts
[48%], then macular degeneration and
glaucoma. 8% of VI did not have a clear
ophthalmological cause, and may include
VI due to brain changes.
1.9 Most VI tests are possible for 80% of
people with dementia.
1.10 Mistrust of tests still exists as to a) whether
people with dementia can accurately
respond to them and b) whether
optometrists can accurately measure VI in
such people. However, physical problems
need to be treated to clear the way for
neurological assessment and interventions
to be possible.
Talk by Michael Bowen, Director of Research,
the College of Optometrists
1.1
In his talk, Michael presented
developments in the PrOVIDE Study
(Prevalence of Visual Impairment in
Dementia) into the theory and practice of
how people with dementia and with visual
impairment can best be helped.
1.11 Qualitative studies of eye examinations
revealed that a) most participants
were satisfied, but b) that carers were
worried about their reliability. Hence c)
Optometrists need to be informed in
advance about dementia diagnoses
and the presence of carers at testing is
invaluable.
1.2 The starting point was around awareness
that a person with dementia could
not necessarily be easily assessed by
standard eye tests. Assessment of their
visual problems was complicated by their
inability to comply with test instructions.
1.12 Successful VI treatment does raise the
quality of life.
1.3 Visual acuity measured by standard tests
was therefore not delivering a full picture
when the interpretation of vision was
impaired by dementia.
1.13 Of the 800 research participants, none
knew they could have a test free in their
own homes if they could not get to an
optometrist. This is far less stressful.
1.4 The study aims to measure how many
1.14 Expedited cataract surgery is welcomed in
dementia cases.
people with dementia also have VI (Visual
Impairment)
1.5 And secondly to assess the care problems
involved.
1.15 Advice from research re preparing for an
eye examination:-
1.6 There is in fact a higher rate of VI amongst
people with dementia. 50% of them were
however helped by provision of up to date
spectacles.
1.7 There were problems caused by much of
the existing data being 15 years old! And
further by the lack of reliable information
from care homes, where VI was 2-2½
times more common.
11
A) Advise the optometrist beforehand of a
dementia diagnosis.
B) Request flexibility; more time will be
needed - possibly 2 visits.
C) Choose the time of day when the person
with dementia can cope best.
D) Request information on home visits.
E) Request carer to be present, if possible.
minutes cont’
1.16. Results indicate that changes need to be
made to the 1989 Opticians Act. Lobbying
is also needed re: a] greater flexibility in
appointments, improvements in visual field
tests, guidance for obtaining consent (i.e.
whether patient or carer should give it) and
b] better information on how to use your
vision.
Current research aims are to refine
optometrists’ understanding and practice,
to develop improved tests, to expedite
primary care and to clarify referrals.
led to a shifting of power away from
professionals so that patients could set
their own priorities.
2.3 How were the project’s aims to reach
GPs? By those involved going to their
conferences, speaking at events and
arranging for mentors for new members.
Tim now includes people with dementia
in his conferences since there is a huge
impact when a person with dementia
describes what it is like for them.
Responses to questions from the floor.
1.17 Free NHS home testing is available for the
people over 60 years of ages.
Failure to recognize PCA can delay its
diagnosis for up to 5 years.
The sharing of international research
is increasing and further modules for
post grad studies are in preparation.
UCL publicity for learning around PCA is
developing fast.
1.18 How to decide which optician to use:
Consult College of Opticians web sites and
leaflets (one on dementia is still needed).
Ask about Optometrists’ specialisations.
N.B. Those conducting home tests often
have more experience of rare conditions.
Registration (via GP):- secondary referrals
allow patient to choose between
optometrist or neurologist.
Talk by Nada Savitch, Networking facilitator
for DEEP (Dementia Engagement and
Empowerment Project)
2.1 “Nothing about us without us”.
The project aims to encourage the voice
of people with dementia as contributors,
participants, and citizens.
Hence there is a need for people with
dementia to share stories, to ask for help,
e.g. on planes and in day groups and to
write about their experiences http://www.
onourradar.org/dementia/
2.4 Considerable impact can be achieved
by collective engagement. It can initiate
changes in national policy e.g. via the
British Psychological society, the House of
Lords etc. It can usher in changes in the
culture at national meetings and events
about dementia.
2.5 Resources and guidance.
E-mail Rachel at rachel@myid.org.uk or
Nada at nada@myid.org.uk for print offs
from www.dementiavoices.org.uk to give
to organisations. See also http://www.
dementiaaction.org.uk/
Deep offers groups with connections,
mapping of interests and skills, collating
and developing good practice.
Celia Heath April 2015.
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.
2.2 Why Now?
An original project followed 2 groups
of people with early onset dementia
diagnosis. During it they became
empowered and engaged developing
higher expectations from treatment. This
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