posterior cortical atrophy
PCA SUPPORT GROUP
www.pcasupport.ucl.ac.uk
newsletter
Welcome to the [PCA] Support Group
Welcome to this PCA Support Group
Newsletter. I hope that the content of the
newsletter is of interest to all who read
it; however, I am acutely aware of the
difficulties in producing information which
meets everyone’s needs and in a style
which they are comfortable to embrace.
Please do let me have any suggestions
regarding the format of the newsletter
and indeed any contributions you wish to
make.
This newsletter is available in a font
and format which people with PCA may
find easier to read. Please let Jill Walton
know if you would like to receive a copy.
It will also be available as an audio
recording, accessible via the website.
For those of you who receive the
newsletter as hard copy, we trialled the
‘Articles for the Blind – Free postage
Scheme’ in our March and June
newsletter circulations. We assume
that they 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 I please remind you that
if you are able to receive the newsletter
Newsletter Issue 20, Sept 2014
electronically, we are very happy to provide it
via this means.
Our latest congratulatory regards are
extended to Seb who has been promoted to
Professorial Research Associate at UCL.
Regional meetings are now taking place in
Oxfordshire, Berkshire, Cambridgeshire and
Hertfordshire. There will be an inaugural
regional meeting in Sussex in the New
Year. Details of forthcoming meetings are
listed overleaf and the minutes of the UCL
meetings are published at the back of the
newsletter.
In the June newsletter I referred to the critical
need to raise awareness of not only PCA, but
rarer types of dementia in general, and the
unique challenges faced by younger people
embracing these diagnoses. I am delighted
to confirm that a raising awareness event
which will focus on exactly these issues
is being arranged. It will take place in the
House of Lords on December 9 2014 with
Baroness Sally Greengross and Professor
Nick Fox due to attend and welcome an
invited list of guests. Baroness Greengross
is a crossbench (independent) member of
the House of Lords and chairs the All-Party
Parliamentary Group on dementia. Prof Nick
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’
Fox is director of the Dementia Research
Centre, UCL. I will of course keep you
updated and intend for this event to achieve
the primary objective which is to have key
players leave the event with a mind-set they
didn’t have before they came: principally
that dementia is not only about memory loss
and that it affects younger people too. This
event is a support group initiative and one
which I hope you see as a platform from
which your views will be represented.
the needs of couples facing a diagnosis
of dementia. He updated the group on
results of his latest study: ‘A Relationship
Intervention for Couples Living with
Dementia’, and explained come of the
ways in which the Tavistock Centre was
able to offer services for people living in the
borough of Camden.
May I take this opportunity to invite you to
the forthcoming full support group meeting
on Fri Nov 7 2014. The venue will be Wilkins
Front Quadrangle which is located just in
front of the usual Wilkins Building, UCL,
Gower St, London WC1E 6BT. We will be
recording this meeting and subsequently
uploading an audio file which will be
accessible via the website.
The June meeting was visited by 2 guest
speakers. Dr Adam Fyffe is a Clinical
Psychologist in the Memory Clinic, East
London NHS Foundation Trust. Adam helped
the group work through some of the issues
of change following a diagnosis of PCA.
‘What is lost, what is gained and what stays
the same?’ was the direction in which Adam
guided our thinking and conversation as
he led our discussion around some of the
experiences that relate to a diagnosis of
PCA.
Prior to this meeting will be the carers
meeting on September 26 2014. Details of
these and other forthcoming meetings are
listed later in the newsletter.
I look forward to seeing you at one of
these meetings or indeed being in contact
with you in whatever capacity is most
appropriate.
meetings
Andrew Balfour is the Director of Clinical
Services at The Tavistock Centre for Couple
Relationships and has spent many years
developing interventions that best assist
Jill Walton
Future Meetings
Thursday 26 February 2015 Venue:
Wilkins Front Quadrangle Events Venue
which is located just in front of the usual
Wilkins Building, UCL, Gower St, London
WC1E 6BT. 11am -2pm.Coffee available
from 10.30am and lunch provided.
Carers Meeting
Friday 26 September 2014 Venue:
Seminar Room, Dementia Research
Centre, 1st Floor, 8-11 Queen Square,
London, WC1N 3AR. 11am -2pm.Coffee
available from 10.30am and lunch
provided.
We are expecting 2 guest speakers at this
meeting;
Angela Sherman will be talking about
Continuing Health Care funding
applications. You can find out more about
the organisation she directs at www.
caretobedifferent.co.uk
Dr Seb Crutch will provide an update on
the Stages of PCA document. Thank you
for your contributions to this document,
which we have been working on over the
past 12 months.
Dr Eneida Mioshi: Department of
Psychiatry, University of Cambridge
School of Clinical Medicine, who will be
talking about coping strategies for carers,
amongst other things.
Prof Nick Fox, Director of the Dementia
Research centre will also be hosting a
question and answer session at the
meeting, taking questions from the
audience.
continued overleaf
2
meetings cont’
Full support group meetings
are scheduled for:
Regional Meetings
Regional meetings provide an informal
opportunity to meet other people affected
by PCA.
Friday Nov 7 2014. Venue : Wilkins
Front Quadrangle Events Venue which is
located just in front of the usual Wilkins
Building, UCL, Gower St, London WC1E
6BT. 11am -2pm.Coffee available from
10.30am and lunch provided.
Oxford regional PCA Support Group Mtg:
The venue for these meetings is at the
home of Martina Wise: in Blewbury,
Oxfordshire. Please contact Martina by
email or mrsmartinawise@gmail.com or
07958 668 035 These are informal social
gatherings for people affected by PCA.
Dr Jon Schott will present ‘Using imaging
and genetics to understand PCA’ and Dr
Seb Crutch will update the audience on
proceedings at the recent International
Alzheimer’s Association International
Conference in Copenhagen, at this
meeting.
Berkshire Regional Support Group Mtg:
November (date to be confirmed) at
Barkham COAMHS, Wokingham Hospital.
These meetings are organised in
conjunction with the ‘Young People With
Dementia’ Berkshire West group.
Friday March 27 2015. Venue: Wilkins
Front Quadrangle Events Venue which is
located just in front of the usual Wilkins
Building, UCL, Gower St, London WC1E
6BT. 11am -2pm.Coffee available from
10.30am and lunch provided.
Hertfordshire Regional Support Group
Mtg:
Wednesday October 1, 10.3012noon. The venue for this meeting
is in The Point Meeting Room, Christ
Church, The Common, Chorleywood,
Hertfordshire,WD3 5SG.
Friday June 19 2015. Venue: Wilkins
Haldane Room, Wilkins Building, UCL,
Gower St, London WC1E 6BT. 11am -2pm.
Coffee available from 10.30am and lunch
provided.
Sussex Regional Support Group Mtg:
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.
3
directions
Directions for forthcoming meetings
Wilkins Main/Front Quadrangle, University College London, Gower Street, London WC1E 6BT
Underground
Services to these stops include route numbers:
10, 14, 24, 29, 73, 134, 390.
London Buses Infoline: 020 7222 1234
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.
Rail Travel
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.
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 Warren
Street station, about five minutes’ walk from UCL.
4
fuundraising
Details of some of the fundraising ventures that
have been initiated on behalf of the support
group can be found on the website at http://
www.ucl.ac.uk/drc/pcasupport/fundraising
A social fundraising event is being organised
for Saturday Nov 15th 2014. The Myrtle Ellis Fund
invite YOU to host a ‘Simultaneous Global Virtual
Quiz’. You invite your family and friends for a
meal during which quiz questions which have
been emailed to the host, are answered by each
group, with answers being emailed back within
an agreed time frame. Guests can be asked to
donate money to the cause..whilst enjoying a fun
evening with friends!
You know only too well how, as a small group,
we rely on fundraised and donated monies in
order to run the groups, and as such your efforts
are very sincerely appreciated and received.
Our thanks go to all fundraisers, without whose
efforts the groups would not function.
Please save the date and circulate this invitation
as widely as possible!
Jo Cornwell recently facilitated a fun day of
‘Partyfantastic’ events and partakers in Alan
McCammons sponsored cycle ride in June are
pictured below. Both events went well and raised
significant funds for the group.
5
fundraising cont’
A social fundraising event is being organised for Saturday Nov 15th 2014. The Myrtle Ellis
Fund invite YOU to host a ‘Simultaneous Global Virtual Quiz’. You invite your family and
friends for a meal during which quiz questions which have been emailed to the host, are
answered by each group, with answers being emailed back within an agreed time frame.
Guests can be asked to donate money to the cause..whilst enjoying a fun evening with
friends!
Please save the date and circulate this invitation as widely as possible!
6
donation
Discworld Foundation Donation to Myrtle Ellis Fund
It is with huge appreciation that the Myrtle Ellis Fund (MEF) has received a
significant donation of £24,000 (representing around 18 months’ running
costs) from the Discworld Foundation.
Founded by Terry Pratchett who, as many of you
know, has made public his own diagnosis with
PCA, the Trustees of the Foundation are advised
by Terry’s assistant, Rob who kindly advocated
the MEF cause.
with a total of around 700 attendees across
all the meetings. Additionally travel and
accommodation bursaries are available to
patients and their carers.
No doubt the demand for regional meetings
will continue to rise and we are grateful for other
support provided free of charge, namely: a
finance manager and administrative assistance
at the National Brain Appeal; social media/
Skype/website support from the Dementia
Research Centre and UCL; and volunteer help
provided by many members of the support
groups themselves.
Over the past seven years the MEF has received
around £60,000 through legacies, sponsored
events and general donations. However, the
fund is currently running on very low reserves
and, given the recognition of the vital role that
the support groups play, there is an aim to
return the MEF to a position where it holds a
balance of three years’ worth of reserves.
The MEF pays for four support groups including
11 London and 10 regional meetings a year,
a part-time support nurse coordinator and
all associated expenses such as catering,
marketing and venue hire. Approximately
500 people (UK and overseas) are currently
on support group databases receiving emails
and newsletters as well as accessing the
services of the support group nurse coordinator,
The team is grateful for all and every
contribution made to running the support
groups so this important work can continue.
Anyone who would like to get involved in
further fundraising initiatives are welcome to
contact Diane Garfield or Susie Shaw via email:
myrtleellisfund@outlook.com
7
your contributions
Rosie Holmes attended the Cambridge
Teresa and David Jefferey are
meeting on a sunny July afternoon wearing
a pair of sunglasses which she had recently
bought through her local optician. She writes:
As I have PCA, I had trouble with strong bright
light, felt sick and needed to lie down in a
darkened room. I asked my optician for his
advice on sunglasses and he recommended
that I tried ‘Maui Jim’ prescription sunglasses.
They were new to his practice but he knew their
benefits and had a pair for himself.
longstanding members of the support group.
Teresa raises an interesting idea which we
would welcome your comment on with regard
to taking it forward as a support group initiative.
Teresa comments: I have noticed that several
people who used to attend meetings regularly
have not been for some time. I recently received
a newsletter from David’s old university and this
has a “where are they now” section at the end
in which alumni can include news of what they
are up to and also there is an obituary section. It
is not necessarily appropriate to use the support
group contact list for this purpose, as it would
be insensitive to contact people in the midst of
a difficult time and I think that for those of us
who are further on in the progression of the
illness we have to be mindful at the meetings of
not frightening those who are at the beginning
of their journey. I feel it would be inappropriate
for us to ask Jill or Seb how these others are
progressing as even if they did know it would be
not something they could disclose because of
data protection. Maybe those of us in a similar
position could be invited to submit an update
prior to the meetings. I am now experiencing
difficulties with David which relate to how far
we are along the progression of the illness. I
feel sure that some of the others who no longer
attend may have valuable tips as to how they
dealt with some of these things but it seems that
just at the point where we find ourselves more
isolated in the community that also we become
a bit cut off from each other within the support
group. Perhaps it is only me who feels like this?
I found that they helped cut out the glare,
were lightweight, prevented strain on my eyes
in bright light and colours were not dull and
washed-out. They give me edge to edge clarity
in the widest field of view possible. Colour has
a profound effect on our moods, emotions
and performance and these sunglasses have
allowed me to see more colour than ordinary
sunglasses.
Having had numerous sunglasses in the past I
feel I could not be without these sunglasses and
they are trendy!
Costs will vary but are approximately £150.
I hope this helps others and the website is www.
mauijim.com
The Sonido portable amplifier has
been recommended by a member of the
group. Although not specifically PCA related,
they commented that it helped them focus
and pick up essential messages more easily.
The amplifier is designed to help you hear
conversations and other sounds (like the TV)
more clearly. Simply point the Sonido in the
direction you want to listen and it will amplify
the sound you want to hear and reduce the
background noise from everywhere else.
Your comments on Teresa’s idea, and
suggestions as to how to take it forward would
be much appreciated. Please get in touch with
Jill if you have suggestions you want to make.
You will need to choose from a neckloop,
headphones, stethoset or ear hooks to make the
unit complete.
Visit http://www.livingmadeeasy.org.
uk/communication/wired-audio_visualamplifiers-p/action-on-hearing-loss-sonidodigital-listener-0102492-1433-information.htm
for more information.
8
information technology support
Information Technology and Assistive
Technology Devices
In a recent study looking at opportunities for
people with dementia being supported to use
computers, Sarah Kate Smith from the School
of Health & Related Research at the University
of Sheffield worked with people with dementia,
assisting them to use various IT devices
uploaded with familiar activities including
dominos and jigsaws as well as interactive
applications enabling members to illustrate
their creative flair.
Although the study was not specific to people
with a diagnosis of PCA, some of these devices
were able to be personalised to the individual’s
needs and requirements, in a way that might
be relevant for our group members.
The study concluded that people living with
dementia do not lack the desire to interact with
contemporary IT devices, but rather lack the
opportunities to trial them , and as such, her
recommendations of ideas for activities using
computers include:
• ‘We can do IT too’ is a book written by Nada
Savitch and Verity Stokes and published
by Speechmark. The point is made that as
computers and other digital gadgets such as
cameras and phones are part of our lives,
so it is important that people with dementia
engage with these IT driven activities. The
book focusses on using computers as part
of activity programmes for people with
dementia and is available from Amazon via
http://www.amazon.co.uk/We-Can-Do-ITToo/dp/0863888321
• ‘IPad engage’ is an organisation which
aims to inspire creativity through iPad using
various digital apps. It is directly focussed
around individuals living with dementia, with
the purpose of improving engagement and
digital confidence.
For more information see http://ipadengage.blogspot.co.uk
Jill is investigating the possibility of arranging
an ‘iPad engage’ workshop specifically for
support group members …further details to
follow.
9
international conference
Research report from the Alzheimer’s Association
International Conference. Tim Shakespeare
The Alzheimer’s Association International
Conference is the world’s largest forum
for research into dementia. This year the
conference was held in Copenhagen from
the 11th-17th of July. I went with three goals
in mind - to present some of the work we’ve
done into Posterior Cortical Atrophy at UCL, to
find out more about research that other groups
are doing, and to hear more about the PCA
working party (an international group of PCA
researchers aiming to encourage collaboration
and improve consensus on diagnosis of PCA,
set up by Seb Crutch).
I was pleased to be able to present a few
different aspects of PCA research that I’ve
carried out with others at the Dementia
Research Centre. Two of these were in poster
sessions, where lots of researchers put up
posters about their work providing a great
opportunity to discuss with others face to face.
In one session I explained our research into
changes in the white matter of the brain in
PCA (the white matter contains the connections
between different areas) which helps us to
understand the way changes in the brain lead
to the symptoms that patients experience.
In another session I presented our work into
the effects of PCA on everyday skills and
self-care. It was helpful to get feedback from
other people doing similar research, and also
encouraging to know that other researchers
were interested in finding out about this work.
On the Monday I gave a short talk about
our work looking at eye movements in PCA,
exploring the contribution that smaller eye
movements and more difficulty in tracking
moving targets might make to difficulties in
seeing what and where things are.
still a lot of work to do to understand what
causes the disease and what can be done to
prevent it in people who don’t have those risk
factors.
Perhaps the part of the conference that applied
most directly to my work was the Posterior
Cortical Atrophy consensus criteria working
party meeting. This group, started in 2012, has
already started to have benefits - a study into
the genetics of PCA including over 400 DNA
samples (the largest study of PCA so far) is
currently being carried out at University College
London thanks to collaboration with centres
from across Europe and the USA. The group
also had a discussion about standardising how
we diagnose PCA and which tests we use, with
the aim of writing a clearer set of criteria that
all groups can use.
Having presented my work, gained more
understanding from hearing other people’s
research and found out about plans for
greater collaboration in PCA research, I left
the conference with great enthusiasm and
the feeling that recognition of PCA - and
Alzheimer’s more broadly - is improving.
1. Potential for primary prevention of
Alzheimer’s disease: an analysis of populationbased data. 2014. Sam Norton, Fiona
Matthews, Deborah Barnes, Kristine Yaffe,
Carol Brayne. Lancet Neurology 13(8) 788-794.
Highlights from other work presented at the
conference included investigations into the role
of lifestyle risk factors in Alzheimer’s disease.
One study suggested that one in three cases
of Alzheimer’s could be avoided by reducing
risk factors such as hypertension, obesity and
smoking1; clearly these are important things to
consider when looking at the whole population,
but it’s also important to note that there are
many people who develop Alzheimer’s but
don’t have those risk factors, so whilst reducing
these risk factors looks to be helpful, there is
10
dementia care
The Triangle of Care – Best Practice in
Dementia Care
We are always on the lookout for initiatives
which might impact positively upon the
experience of people with PCA.
Carers Trust has been working with the Royal
College of Nursing to adapt the Triangle of
Care which was first launched in 2012 to meet
the needs of carers of people with dementia
when that person is admitted to a general
hospital. The new guide is now available and it
is hoped that it will have the impact for carers,
professionals and people with dementia the
way the original Triangle of Care has. The
guide to improving dementia care has recently
been launched in Parliament. It sets out six
key standards required to achieve better
collaboration with carers, plus good practice
examples and useful resources.
You can download a copy of the guide (1.0 MB)
from this page or you can order copies of the
guide from Ruth Hannan rhannan@carers.org
New Factsheet available
At the request of group members a factsheet
on travelling with PCA has been produced and
is available as a download at http://www.ucl.
ac.uk/drc/pcasupport/contact_links
We recognise that there are various other
advice sheets available on travelling, but this
publication specifically refers to the symptoms
of PCA. It makes reference to the preferred
allocation of electronic assistance buggies
over the provision of wheelchairs, which
was an issue people raised as difficult to
convey to airport staff when making provision
to travel. Electronic buggies allow for the
person with PCA to be accompanied and
reassured during use, and allow some choice
in regard to direction of travel, which can
make the experience less disorientating and
overwhelming.
Triangle of Care self-assessment tool-Dementia
Guide (242 KB)
In conjunction with the PCA support group
publication ‘Living with PCA’ this may be
a helpful tool for people facing hospital
admission.
11
minutes
PCA SUPPORT GROUP MEETING MINUTES
27 June 2014, Chandler House, WC1N 1PF
Coping with the Sense of Loss in Relationships following a
diagnosis of PCA
Venue and Attendees
41 members attended, with Jill welcoming 6 new
members. We hope that you enjoyed the chance
to share PCA with like-minded people and that
it will be the start of a fruitful exchange of ideas.
We are grateful to Chandler House for accepting
us at short notice: it proved to be easy to access,
though some PCA people found the life size
purple figures on the WC doors a bit scary!
1. Welcome and update from Jill: All
voices were recorded at this session to
enhance the Replay on Demand facility for
housebound listeners and those joining us
1.1 YoungDementia UK Homes (See
minutes on Oxfordshire Project 5.7.13) are
designing a new website and gathering
reactions to the effectiveness of its décor
and navigational aids. It is highly effective
in building confidence and supporting the
welcome the YDHUK offers to residents
and visitors. Their designs were available
at the meeting and comment invited [and
subsequently fed back].
‘What is lost, what is gained and what
stays the same?’
Adam led an open reflection by members
on their experiences. Points made by
2.4 People with PCA are more vulnerable to
certain forms of stress. Agitation increases,
resulting in greater demands on the
skills and resourcefulness of carers in
responding.
2.6 Role strain and loss of role/identity affect
both partners: Carers often withdraw from
other roles in favour of caring for the PCA
partner. Cherished joint plans, e.g. for
retirement, are put on hold.
2.7 Depression results for both and the
need to recognize when help is needed
becomes crucial. Sadness, loss of pleasure
or interest, tiredness combined with the
lack of energy, motive or concentration
become constant companions. The key
points for action are the intensity of such
feelings: do not be afraid to seek medical
help for either partner.
2. Talk: Adam Fyffe, Clinical Psychologist.
East London NHS Memory Clinic.
2.3 Physical symptoms include non-erect
walking and an inappropriate reaction to
pain.
2.5 Emotions are stronger. The “Why Me?”
syndrome, anger and frustration become
more marked in both partners.
from overseas.
deteriorates to mumbling: a development
exacerbated when combined with hearing
loss at this stage. The perception of aural
stimuli is increasingly affected by the
distance from the speaker/s.
members during the discussion included:
3. What doesn’t change?
What changes?
2.1 The Brazilian partner in a UK/Brazilian
marriage was diagnosed with early onset
dementia at 50: within 3 years she had lost
the ability to speak the English learned at
42 years.
2.2 Others noted the loss of the ability to join
in conversations. Hence sufferers become
increasingly isolated in group events
where discussions start to by-pass them.
“Selective hearing” develops and speech
3.2 A PCA diagnosis doesn’t change a
person’s character or make a saint of carer
or sufferer.
12
3.1 Emotions increase in importance.
Words, especially the tone or loudness
are more easily misunderstood. Showing
positive emotions such as love are key
when words fail.
Humour and companionship survive and
help with coping strategies. Concentrate
on activities you can still share: e.g.
minutes cont’
walking, listening to music.
Gains and summary.
Living with PCA is a mixture of positives
and negatives. Personality loss and
delusions are less common in PCA than in
Alzheimer’s and the memory is retained
for longer, so it is very much a case of
sensitivity to what both partners can still
enjoy together. Examples such as, exercise
groups, chair dancing, explaining the parts
of films PCA partners can see, all give relief
from the things they can’t see and the
need for constant care.
4:
Talk: Andrew Balfour, Director of Clinical
Services, Tavistock Centre for Couple
relationships.
‘A Relationship Intervention for Couples
Living with Dementia’
4.1 Closer relationships lead to a slower
decline, postpone dying and the need for
residential care. Financial- and emotional
costs are reduced.
4.2 Highlights and recommendations from an
8 month cycle of research.
In sum, the research showed that
supportive relationships have a positive
effect on all levels of care but there
are caveats. There is a need to enable
partners to express and share feelings,
to recognize stress, especially when it is
leading to one partner losing the ability
to cope. The hope, of course, is to thus
avoid the premature foreclosing of the
relationship.
4.3 Containment is important (i.e. the
accepting and processing of events), in
showing that partners have understood
and been understood. The carer may be
less able to give and receive containment;
hence the importance of not glossing
over reality so that resentment does not
take hold. There are few role models and
inevitable feelings of guilt. It is important
to acknowledge failures and to accept just
how hard things are.
4.4 The 50’s belief that a couple could not
be treated as a unit is hopefully long
past. Current interventions recognize
their importance as a unit: they include a
mapping of feelings as follows:
The sufferer can mirror the anxieties or
anger of the carer: hence the importance
of letting out the anger appropriately.
The fact that both are caught between
the old life and the new breeds the need
for agencies to meet people where they
are. With this comes the need to tackle
things when individuals are ready to do so
and to go at their own pace. It is vital that
agencies are aware of the sheer volume of
information hitting couples.
It is important for both partners to
experience interest and to acknowledge
that need to be listened to that enables
listening in return. At home as in care
homes, carers need to be cared for too!
4.5 The use of videos enables therapist and
couples to achieve distance from events
and thus to see each other and each
other’s needs more clearly - this has
proved to be a vital ingredient in couples
being able to express the need for support
from agencies. Alas, even today, the
need to see the couple as a unit of care
is lagging behind practice in Child Care
services.
4.6 It takes time to build up trust. The use of
small, less intrusive cameras and above
all, the showing of interest are crucial.
Whatever the stage of stress is, voicing it
helps.
4.7 Reply to a question from the floor about
access to the Tavistock: this is by selfreferral. Unfortunately it is restricted to
Camden residents, since its findings are
linked to that borough.
Celia Heath, July 2014
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