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.
On December 11th 2013 the first G8
Summit on dementia was held in London.
The G8 Dementia Summit brought
together, for the first time, health ministers
from around the world [Canada, France,
Germany, Italy Japan, Russia, United
Kingdom, United States of America (with
representation from the European Union)
with the aim of stimulating investment
in dementia research, improving the
prevention and treatment of dementia,
and improving quality of life for people
with dementia. There was much media
interest in the event and many powerful
stories of how these conditions affect
people’s lives (indeed you can still hear
our very own Morag de Waele and Prof
Newsletter Issue 18, Mar 2014
Martin Rossor speaking on Radio 4’s You and
Yours programme at: http://www.bbc.co.uk/
iplayer/episode/b03ktz0h/You_and_Yours_
Diesel_Investigation/ (19:18-26:45).
In preparation for the summit, Health
Minister Jeremy Hunt MP visited the
Dementia Research Centre here at UCL
where Nick Fox, Martin Rossor and Seb
Crutch were pleased to have an opportunity
to describe the current state of dementia
research. More coverage of the visit is
included on page 6.
At the time of the summit, one particular
comment caught my attention as specifically
significant to members of our groups. The
comment was made by Igor Rudan, a
professor of epidemiology at the University
of Edinburgh in Scotland, who also works
for the World Health Organisation. In
explaining why the December 2013 revised
predictions of the number of people
affected by dementia was 17% above those
previously published, Prof. Rudan made
reference to various reasons for this increase
in prevalence data. One of the reasons
he listed identified that previous estimates
had assumed all cases of dementia would
be among people over 65 years of age,
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’
and that by accounting for people below
this age, the prevalence numbers were
consequently pushed up. There were
of course other influencing factors, but
this heralded at least something of an
appreciation that the numbers of people
affected by young onset dementia are
significant.
which is led by Sebastian Crutch at the
UCL Institute of Neurology’s Dementia
Research Centre and referred to later in
this newsletter.
Fri June 27th 2014 in Wilkins Old
Refectory at UCL, Gower St., WC1E 6BT.
Coffee will be available from 10.30am.
Meeting will finish by 2.30pm. Lunch
provided.
Since the November 2013 newsletter was
circulated there has been another regional
support group meeting; in January 2014
we were hosted in the beautiful home of
Martina Wise in Oxford, to whom I am
extremely grateful for her help in facilitating
and organising that event. There has also
been a full support group meeting, and
more recently a carers meeting here at UCL.
Minutes of the UCL meetings are published
at the back of the newsletter.
Carers Meeting
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.
Regional Meetings
Cambridge regional PCA Support Group
Meeting:
We are currently trying to organise a
second meeting for a date in early May.
May I take this opportunity to remind and
invite you to the forthcoming meeting
on Fri March 21 2014 . The venue will be
Wilkins Old Refectory which is in the Wilkins
Building, UCL, Gower St, London WC1E 6BT.
Oxford regional PCA Support Group
Meeting:
Monday 24th March. The venue for this
meeting will be confirmed by Martina
Wise 48 hours beforehand and will be
held at either Goring or Blewbury, in
Oxfordshire. Individuals MUST therefore
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.
Details of additional forthcoming meetings
are listed over the page.
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
Berkshire regional meeting:
Forthcoming
Meetings
Monday 28 April 2014, 12.30pm – 2pm
(tbc) at Barkham COAMHS, Wokingham
Hospital . This meeting will be organised
in conjunction with the ‘Young People
With Dementia’ Berkshire West group.
Full support group meetings are
scheduled for:
Please contact Jill for more information
about any of these meetings.
Fri March 21st 2014 in Wilkins Old
Refectory at UCL, Gower St., WC1E 6BT.
Coffee will be available from 10.30am.
Meeting will start at 11am and finish by
2.30pm. Lunch provided. Agenda to
include a visit by Andrew Palmer, from
Action for Blind People, who will
demonstrate some of the electronic
gadgets and adaptations available for
visually impaired people.There will also
be a presentation by researchers involved
with the ‘Seeing what they see’ project,
2
directions
Directions for forthcoming meetings
Wilkins Old Refectory, University College London, Gower Street, London WC1E 6BT
Underground
Warren Street station, about five minutes’ walk
from UCL.
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.
Services to these stops include route numbers:
10, 14, 24, 29, 73, 134, 390.
London Buses Infoline: 020 7222 1234
British Rail
London has many mainline rail stations. Most
of these are a short journey away from UCL,
with the stations at Euston, King’s Cross and St
Pancras being within easy walking distance.
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.
British Rail Infoline: 0845 748 4950.
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.
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
3
your contributions
Dennis Hotten is a longstanding member
of the group, whose wife Jenny has a
diagnosis of PCA. He writes: Jenny worked
Her eldest daughter Jackie has been selected
to run the London Marathon on the 13th April
raising money for the Alzheimer’s Society.
for Three Rivers in the Benefits Dept in 2000 and
was diagnosed in 2006 with Alzheimer’s at the
age of 55. She is currently in a nursing home
with very little quality of life as we know it.
Please look at the following website
www.virginmoneygiving.com/jackiedownes
for more information.
One female carer writes: In my journey
Jeff Solomons explains: at the last PCA
through this illness there have been three things
that have caused the most concern to me. meeting I mentioned that I had produced
diagrams for using a Virgin Tivo box. The Tivo
box is only available on Virgin TV and is not
suitable for other TV companies such as Sky or
BT. The Tivo remote is not particularly easy to
use but Susan can just about manage some of
the functions, although I have to explain nearly
every time she watches TV!! I have attached
these and if they are of benefit to anyone
please pass them on.
1 Obtaining funding
2 Drug management of the more challenging
symptoms. There seems to be no clear
research into dealing with the condition now,
with emphasis on finding a cure for the
future.
3 Finding a suitable care home for my
husband without a cohesive list to refer to.
Do others agree?
4
your contributions cont’
Teresa and David Jefferey enjoyed being
in London for a family concert at the Barbican.
The concert is aimed at 8 to 12 year olds
and is less formal and shorter than a normal
classical concert. The Barbican are also very
helpful regarding finding us seats on the
end of the row near the sides where they
have the handrail and we have their access
membership which gives us concessions on
tickets if we book early. Sunday’s tickets were
£5 each, reduced from £10 each. We also
use the lounge restaurant at the Barbican
which is good now I need to feed David as
they do small tapas style dishes which we can
share and they have never had a problem
with us needing to be seated side by side
rather than opposite one another. The plates
are a bit silly, like little ashtrays but they are
happy to provide more suitable ones and a
spoon. Also there is a good disabled loo just
inside the door to the lounge restaurant which
seems quite a well kept secret we have never
needed to queue for this one although there
is often a queue for the other disabled loos in
the venue.
Malcom Appleford shared information at
a recent meeting about the 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
for more information.
‘Stages of PCA’ document
The draft document outlining the different stages of PCA was originally discussed at the PCA
Carers’ Meeting on 20th September 2013, and subsequently circulated for comments and
feedback with the November newsletter. So far, we have received comments and contributions
from 12 members of the group, but would be keen to push that number up to at least 20 in
order to ensure that the document accurately captures as many of the experiences of different
group members as possible. If you feel able to make a contribution to this project by looking
through the text and seeing how well it describes your experience of PCA, please complete
the forms attached at the end of this newsletter and return to Jill or Seb.
5
other news
Health Secretary visits UCL
Image: Professor Nick Fox (left) and Dr Selina
Wray with health secretary Jeremy Hunt at
of Alzheimer’s disease and other forms of
dementia using stem cells as a model.
the UCL Institute of Neurology. Dr Wray is
researching the molecular basis of Alzheimer’s
Disease and other forms of dementia using
stem cells as a model. Mr Hunt examined at first hand the brains
of people who had dementia in life and
observed the damage caused to brain cells.
He saw the effects of Alzheimer’s disease on
the brain including the dramatically reduced
hippocampus - a key structure that underpins
our memory functions.
He then visited the Dementia Research Centre,
where he observed a routine assessment
of memory, language, perceptual and other
cognitive skills which relate directly to the
progressive changes in the brain. Mr Hunt then
saw how MRI brain scans can detect early
change and track the progression of disease. With an ageing population, dementia is soon
to become the biggest burden on healthcare
systems around the world. In 2010, the global
cost of dementia was around £400 billion and
this figure will continues to rise as more people
are diagnosed each year. Alzheimer’s Disease
International estimates that about 135 million
people will be living with dementia by 2050.
The Prime Minister and Health Secretary are
urging industrialised nations to come together
to address the problem head on. This message
was spelled out loud and clear at the G8
summit meeting on dementia. Health and
science ministers, world-leading experts and
senior industry figures came together to identify
and agree on a new international approach for
future dementia research.
On the day of the G8 Summit, the Prime
Minister called for a global effort to tackle one of
the greatest challenges of our time: dementia.
The UK is using its presidency of the G8 to
spearhead a global effort to tackle dementia. To better understand the challenges that lie
ahead, the Secretary of State for Health Jeremy
Hunt recently visited a hub of scientists and
clinicians leading dementia research projects at
UCL.
Mr Hunt was given a tour of facilities at the UCL
Institute of Neurology and the National Hospital
for Neurology and Neurosurgery (NHNN), part
of University College London Hospitals NHS
Foundation Trust.
The NHNN and neuroscientists based at UCL are
at the research epicentre. Clinical researchers
are faced with several challenges: they must
develop new treatments to prevent, slow or stop
the disease – and identify as early as possible
those who will benefit from these treatments and improve the treatment and care of those
affected now.
Mr Hunt observed ongoing research designed
to better understand the causes of dementia
and changes to the brain and met scientists
working on understanding the molecular basis
Countries involved in the event agreed to secure
6
other news
a more coordinated and collaborative approach
to the development of new dementia treatments
and therapies. The full G8 Dementia Summit
Declaration can be found at: https://www.gov.
uk/government/uploads/system/uploads/
attachment_data/file/265869/2901668_G8_
DementiaSummitDeclaration_acc.pdf
The project is entitled ‘Seeing what they see’ and
is led by Sebastian Crutch at the UCL Institute
of Neurology’s Dementia Research Centre. The
work involves and is inspired by the experiences
of people with PCA and their family and friends,
and stems directly from the research that many
of the support group members have participated
in to date.
Professor Nick Fox (UCL Institute of Neurology)
whose research involves improving diagnosis
and tracking the very earliest stages of the
diseases said: “We desperately need to find
better treatment for these devastating diseases and at the same time we must improve the care
and support for the growing numbers of families
that will be affected.”
Dementia-related visual impairment (caused
by degeneration of the brain rather than the
eye) is a common but greatly under-recognised
symptom that contributes to problems as
diverse as visual hallucinations, falls and poor
diet. The project aims to deliver interventions
that compensate for dementia-related
visual impairment in the home/care home
environment, and to investigate the impact
of dementia-related visual impairment upon
health-related quality of life in people with
dementia and their carers.
Up to 400 new dementia patients are referred to
the NHNN each year, many are in their 50s and
60s and some even younger.
Professor Martin Rossor is director of the National
Institute for Health Research (NIHR) dementia and
neurodegenerative research network (DeNDRoN)
which is hosted at UCL. He said: “Research into
dementia requires investment across the whole
spectrum from basic science to policy research.
The research groups at the NHNN and the UCL
Institute of Neurology are particularly focused on
early phase research and experimental medicine.
Research at the NHNN and UCL covers the whole
spectrum from basic science to health service
research.
Two other UCL projects were also funded in
the same call: ‘Promoting Independence in
Dementia’ (PRIDE) led by Professor Martin
Orrell (UCL Mental Health Sciences Unit) and
‘Managing Agitation and Raising Quality of Life’
(MARQUE) led by Professor Gill Livingston (UCL
Mental Health Sciences Unit). The investments
were announced at the G8 dementia summit
and represent a significant proportion of the
total £20 million funding awarded by the
two organisations for research into dementia
prevention and improvements in the quality of
life for people with dementia.
“We were pleased to welcome the health
secretary to tell him more about our work.”
The NHNN and UCL have benefited from
considerable funding grants in the past 12
months which will accelerate the development of
treatments and identify future therapeutic targets
for neurodegenerative diseases, with the aim of
earlier intervention for patients.
There are currently 44 million people in the world
living with dementia and by 2050 this number
is set to treble to 135 million. Last year Prime
Minister David Cameron announced plans to
tackle the ‘national crisis’ posed by dementia and
this week ministers, researchers, pharmaceutical
companies and charities are gathering in London
for the G8 dementia summit.
Text: UCLH Communications Unit
£2.6m funding for
research into dementiarelated visual dysfunction
“Dementia is a major challenge for our society,”
says ESRC Chief Executive Paul Boyle. “It is
imperative to develop an understanding of the
needs of those with dementia, their families and
the communities they live in.”
UCL has been awarded more than £2.6 million
by the Economic and Social Research Council
(ESRC) and the National Institute for Health
Research (NIHR) to help tackle the challenges
associated with dementia-related visual
dysfunction.
7
Research Opportunities
BMJ Patient Partnership
Strategy Recruiting Peer
Reviewers
Funding
We are currently in discussion with the Homes
and Communities Agency about grant funding.
They won’t fund the whole cost of the project
so we are also talking to Oxfordshire County
Council and West Oxfordshire District Council
about other grants. Grant funding will hopefully
make up about a third of the £3 million we need
to raise with the balance coming from banks
and charitable trusts. We’ll be producing a
summary business case soon which you’ll be
The BMJ is currently inviting people to join its
panel of patient reviewers, providing a perspective
on the patient focussed aspect of particular
manuscripts, drawing on your experience of a
particular topic, condition or intervention.
A key part of this process will involve peer
reviewers being sent selected research papers,
analysis and educational papers to review. The
editorial team at the BMJ believe (and are setting
up a research project to assess this) that your
opinions on papers will add useful insights/
perspectives which will complement the much
valued expert opinions we get from medical,
scientific and methodological reviewers.
able to view on the YDUK website.
Jane Norman Director YDUKH
Please right click on the text box below to open
the link for more information, contact Jill for
details of who to contact at the BMJ
Young Dementia UK
Homes
Lots has happened over the last few months
so what better time than the start of a new
year to update you on our progress?
Design
We are still focusing on our original concept
design of a 12 apartment extra care home with
a mix of one and two bedrooms. One possible
ground floor layout is shown here. All of the
apartments will be self-contained with their own
kitchen, bathroom, living room and bedroom.
Each will have its own small garden as well
as sharing the communal garden and they
will be arranged in three wings that link to the
communal areas—including the cafe, therapy
and staff rooms.
Site
We have managed to narrow our site search
down to one specific site in West Oxfordshire and
we are currently talking to the owner about how
much they want us to pay. The District Council
have indicated their support for our project in this
location, as have the planners so we’re hoping
we’ll be able to go ahead with this one.
8
Action for Blind People
Action for Blind People
of emotions from shock, anger, sadness and
frustration, to depression and grief. This is quite
normal and understandably coping with these
emotions can be very difficult.’
https://www.actionforblindpeople.org.uk/
Action for Blind People is a national charity,
part of the RNIB group, but with 17 local action
teams providing practical help and support to
blind and partially sighted people of all ages.
They offer visually impaired people a number of
services, including help with finding a job, applying
for benefits, housing issues, aids and adaptations,
holiday breaks and information on local services.
Action for Blind People has the time and the
expertise to provide support. They are familiar with
the life changes that people may need to make
and can help guide people through this difficult
time and provide essential information and advice
that will help them adapt to changes in their life.
Visit the website or call their central office on 020
7635 4800.
Obviously, some areas of their expertise will be
more relevant than others to people with PCA.
A representative from the group will be visiting
our March 21 Meeting, demonstrating some of
the technological and daily living appliances
they are able to provide.
‘Losing some or all of your sight can be very
distressing and have a big effect on your life.
People tell us that they struggle with a range
9
minutes
Oxfordshire Regional Meeting
The first Oxfordshire regional meeting took
place at the home of Martina and Sephen Wise
in Blewbury on Monday January 20th 2014.17
people were treated to a scrumptious lunch
whilst benefiting from the opportunity to share
experiences of PCA and exchange stories
with others in similar circumstances. After a
welcome and introduction from Jill Walton,who
set the context of the meeting against a quote
from a book written by Alexine Crawford…
‘telling our story, and hearing the story…is of
enormous importance, both for the teller and
the hearer. Without a sense of history our view
of the present and of ourselves is limited and
handicapped. The telling and the hearing bring
healing and growth’, Martina Wise opened the
meeting by sharing her desire to see a greater
efficiency and awareness in decision making
for legal, fiscal and financial aspects alongside
dealing with PCA and medical needs. People
in the group introduced themselves and shared
as much of their story as they felt comfortable
in doing. People at all stages of the diagnosis
were represented at the meeting and at the
end of our 2 hours together people voted in
favour of a second meeting, a date was set
for 24 March 2014, and an offer to help with
the hosting was kindly accepted. Memorable
comments from the day included one
gentleman’s reference to the way a diagnosis
of PCA had altered his plans for the future by
summing up with the words ‘PCA somehow
got in the way’ . A second encouraging outlook
was provided in the comment ‘acknowledge
the future, but live in the present!’.
Details of the second Oxfordshire meeting are
listed in the ‘Forthcoming Meetings’ section of
this newsletter.
Minutes PCA Support Meeting 8 November 2013
at UCL
Minutes PCA Support Meeting 8 November
2013 at UCL
Welcome by Jill
This time we met in the smaller Haldane room
at UCL, which served our 40 attendees and 4
Skype viewers well, with facilities near at hand, if
not en suite. We hope that the 3 new members
found their journeys across London and beyond
manageable and we look forward to seeing you
again next time.
Jill has represented the Myrtle Ellis Fund
Dementia Support Groups by giving a 20 minute
talk on our work at a recent ARUK Conference
on Fronto-Temporal Dementia. She has also
broadcast on Radio 5 Live- live, of course, on our
behalf. Well done Jill! The Cambridgeshire Group
has launched with 20 members and the new
Oxfordshire group is in the pipeline. Jill thanked
Christina Ruse for her help in facilitating the
Cambridge meeting.
Mandy Haines asked for responses to the new
Contact Details Card in the lunch break.
The Scribe Project
Our pre-Lunch slot was presented by its founders
Lore Windemuth-Wolfsen and Linda Yue.
2.1 They are setting up a Writing Support
Service for professional writers diagnosed
with dementias which affect their ability
to spell and organize written projects, so
that ongoing projects can be completed,
and so that the help of an amanuensis can
thus enable them to operate for as long as
possible.
2.2 When Lore’s husband Paul was diagnosed
with PCA, she watched the effects of
deteriorating keyboard, spelling and
word-finding skills on his work. She felt the
need to find an informed and sympathetic
amanuensis, who could spread the load
for sufferer and carer.
2.3 Linda was at first engaged to edit and
organize Paul’s work: as the relationship
developed, she became able to move
from audio typing to challenging Paul and
working alongside him.
10
minutes cont’
2.4 Projects were very varied: newspaper
articles, Paul’s outstanding projects and
lectures, the reworking of other articles, a
TV Documentary and the editing of a Royal
College of Psychiatrists paper of which
Paul was co-author.
3.4 Seb raised the need for help at lower
levels of letter writing. Enquire via Age UK:
alternatively local hospices and Mental
Health Services do offer help. It is also
worth enquiring for help with phone and
on line problems.
2.5 The joint work was seen as a normal part
of family life which enabled Paul to express
himself for longer. For his wife it brought
respite and renewed energy when she
took over his care again.
Action for Blind People
Steven Franks (Area Operations Manager) lead
our afternoon session.
4.1 Steven began with an overview. The
RNIB runs Fundraising, Campaigning,
Membership in UK and N Ireland along
with the Legal Helpline. Action for Blind
People deals with individuals and
individual need.
2.6 Paul ultimately took the decision to end
his own life while he felt he could still
be a lively Dad for his children. After his
death, Lore and Linda decided to turn
their experience into a niche project in his
memory.
4.2 360 000 people are registered blind or
partially sighted. 2 000 000 live with sight
loss (Estimates based on the frequency of
commonly occurring eye conditions.)
2.7 They were mentored for one year by First
Project with Jo Branson as Patron. They
needed to be specific in what they offered:
it was not simply to be letter writing.
Therefore whole projects are offered,
which can include the writing of books or
chapters, or even complete new projects
for professionals. A fee would be charged
to allow clients to have their own space,
for example, with 6 x 2 hour sessions.
4.3 100 people start to lose their sight every
day. 50% of this loss is avoidable. 4.4
Common causes of sight loss. Diabetic
retinopathy and Macular degeneration
cause a loss of central vision. In Glaucoma,
central vision is retained. Cataracts are
operable. Retinitis pigmentosa caused
by reflected light of snow or sun impairs
vision.
2.8 The Scribe Project has been presented to
the Innovation in Dementia Conference
and there is an appeal for scribes and
clients.
4.5 Benefits of registration as visually impaired
(usually by an ophthalmologist) include
50% reduction in TV license fee, no
postage on articles for the blind, Disabled
bus /Rail Pass, London Taxi Card (0207 934
9791), Assistance with National Rail or TfL
Travel.
Questions
3.1 Question on-line, re cost. Answer:
Charging is currently set at £12 per hour
according to means.
3.2 Q: Is help available with managing
numbers; e.g. when perception of shape is
gone.
4.6 Other services available include:
Assistance with independent living,
Employment (via an Employment
service involving employers), Accessing
Technology (Courses offered plus
demonstrations), Support and Social
groups for Blind people to meet up,
Sports and leisure activities for children,
Information on travel and hotels, Housing
information.
A: This organization cannot help with this.
Help may be available via an occupational
therapist.
3.3 Q: Do you use audio recordings between
sessions?
A: No. The sessions are dedicated work.
Work is not carried on outside of them.
Word searching, for example, requires 1
to 1 negotiation. The service is directed
largely at people who have experience of
professional writing.
4.7 Since people cannot always take in the
implications at the point of diagnosis, help
is offered in the application and appeals
processes for State Benefits.
11
minutes cont’
4.8 Aids for daily life include, large print
keys (for phone and typing) electronic
magnifiers etc. etc.
5.2 A pen friend service is much valued.
4.9 RNIB does offer telephone support and
information on practical and emotional
needs.
5.4 Local sensory teams help with home
improvements, e.g. lighting.
Questions and Comments
5.1 Services for E2L speakers needed as
English can be lost. Talking Newspapers
and books are available in other
languages. Cultural Institutes provide
information.
5.3 Braille is not taught in UK Schools – it
should be!
A request from Seb.
Please comment on the handout re the stages
of PCA in the spaces provided and indicate how
long it took you.
Celia Heath December 2013.
Joint Support Groups Meeting 13 February 2014
Minutes of Joint Carers Meeting at UCL
Venue and Attendees:
Once again UCL hosted our meeting in the
Haldane room, which was ideal for the 59+
attendees. For this meeting the Frontotemporal
Dementia Support Group. The Familial
Alzheimer’s Disease Support Group, The PPA
Support Group and the PCA Support Group
Carers joined together.
Welcome
Jill welcomed the 4 groups with a brief
description of how the 4 dementias manifest
themselves and two ideas on long term
friendship, by way of an introduction to Jane
Youell’s talk on Intimate Relationships in
Dementia. This included a quote from C S
Lewis, “Friendship begins the moment you
meet someone else and realize: What you too?
I thought I was the only one!” She went on to
develop another idea from Alexine Crawford,
who speaks of the road to healing being
transformed by the telling of our own story and
listening to that of a partner.
Jane Youell’s Talk,
How do people living with dementia
understand the differences in intimate
relationships?
1.1
Jane began by reflecting on her own
story and life journey into her many
current roles as Carer, Psychologist,
Activist and Campaigner, and finally PhD
Student and Worker for the Institute of
Health and Wellbeing.
1.2 Harry was born with a mental disability:
it took time for Jane to accept the role of
Carer/Mum. She learned how to connect
with mental health workers in order to
cope with Harry’s behaviours. As he got
older, her husband also faced a 2 year
depressive illness.
1.3 Her journey to researching Intimate
Relationships within Dementia began
during a BA in Psychology. Her final
assignment was to be about the Role of
Humour in Caring. As she worked with
Age Concern, she saw the importance
of intimacy and how it endures when
one partner “is there but not there”. The
topic of today’s talk developed from the
undergraduate thesis on Intimacy in
Dementia that replaced her first idea and
then became the subject of her current
Ph. D research.
1.4 The reality of Dementia dominates all
areas of partnership just as intimacy
affects all areas of physical contact. It
endures over sex but as understanding
distorts, touching for example may be
misunderstood.
1.5 The carer is often left feeling they have
no-one to talk to and are alone in coping
with the myth that those over 65 and the
sick do not need sexual intimacy.
2.1 During her degree, Jane spoke on the
topic of her research for the Parent Carers
Forum. They used government funding
12
minutes cont’
to sponsor her PhD at the University of
Northampton
2.2 This allowed her to interview a wider
sample of carers and some sufferers who
felt more at ease talking about sex in
their home space. Sex helped with their
resilience to disease.
2.3 Why then is sex good for you? It keeps the
immune function healthy, boosts libido,
improves female bladder control, lowers
blood pressure and eases stress. It is
good exercise and hence good for the
heart, it lessens pain and improves sleep.
It generally increases our sense of wellbeing.
2.4 It is therefore important in living well with
dementia. It improves the care for people
living with dementia, helping carers in
particular to stay healthy for longer- with
appropriate breaks.
3.1 The significance of the marital bed: when
this has been the centre of family routine
as well as of marital intimacy, it can be
devastating when one partner has to sleep
separately on the lower floor, e.g. because
they can no longer manage stairs.
3.2 The regularity of sex maintains resilience
rather like keeping regular appointments.
4.6 Another interviewee felt that sex was just
for men and was accomplished out of
duty, not enjoyment. Disease can also
erode performance: sex had become
unpleasant for her, but she felt she had to
do it. It appeared to give him pleasure and
has become an aspect of caring.
5.1 On the positive side, love and dementia
can co-exist. Another interviewee reported
they still had cuddles and kisses, held
hands, stroked each other.
5.2 The use of reminiscence is important.
There is a need to be verbal.
A final thought: Love is complex and
messy. Happy Valentine’s Day! Love keeps
you going.
Individual discussion groups followed lunch
with a chance to ask the speaker or the UCL
staff further questions. Issues raised were: the
speed of symptoms developing, the fact that
carer and/or sufferer can go into denial, guilt
around feelings of failure within the marriage
relationship, delusions of people having sex
(in Lewy Body dementia), a sudden change in
sexual behaviour within the relationship can be
due to disease.
Celia Heath February 2014
3.3 Loss will always be a problem especially
the lingering loss of a partner to dementia.
3.4 Mrs. C the survivor of a childless marriage
still climbs into his bed for comfort in
stress.
4.1 Sex, of course, is not exclusively
heterosexual. Some carers postpone
access to residential care for fear of staff
non-acceptance of a partner’s sexual
divergency e.g., cross dressing. Stone Wall
offer guidance on such issues.
4.2 Issues over consent. All participants in the
medium stage of dementia can consent.
The Mental Health Act 2005 2005 deals
with Mental Capacity and the Law.
4.5 A stage is reached when the subject may
not understand what is happening.
One partner may not understand or enjoy
sexual contact. They may become childlike,
so that sex is irrelevant. James had to
take the decision to be a 100% carer, not a
spouse.
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