posterior cortical atrophy
PCA SUPPORT GROUP
www.pcasupport.ucl.ac.uk
newsletter
Welcome to the [PCA] Support Group
Welcome to the PCA Support Group
Newsletter. I hope that the content of this
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.
Since the June 2013 newsletter was
circulated we have had 2 support group
meetings, both of which are minuted on
pages 14 to 18. Our thanks as always to
Celia Heath for keeping such coherent
notes for us and making it possible for
everyone to get a feel for the content of the
meetings.
The July meeting saw something of a
first for the support group in terms of
technological achievement, as the meeting
was not only recorded and subsequently
uploaded on to the website for general
viewing, but was also ‘up streamed’ in
live time via a UCL media platform. We
were delighted to welcome Jane Norman,
Newsletter Issue 17, Nov 2013
Director of YoungDementiaUK Homes and
Matthew Balaam of Oxford Architects who are
the firm affiliated to the scheme responsible
for a project in Oxfordshire which is designing
accommodation for people with young onset
dementia.
Seb went on to introduce a new ARUK funded
project which will involve staff from the
Dementia Research Centre and which will
seek to scientifically test and develop ways
of compensating for visual impairment in
dementia, including PCA.
The carers meeting in September focussed
on the subject of brain donation, providing
information on the practical, scientific and
personal aspects of the process. Suzie Barker,
Research Governance Manager at the DRC
described the procedure for arranging
and affecting brain donation. Zeinab Abdi,
Academic Clinical Fellow at the Dementia
Research Centre went on to explain the clinical
and research benefits of brain donation, and
Roger Kelly, a recently bereaved PCA Support
Group member relayed how it felt for him
and his wife Wendi, to come to terms with the
decision to go ahead with the process of brain
donation, and all that it subsequently entailed.
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
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The stages of PCA, as compared to typical
Alzheimer’s disease were discussed during
the afternoon session, and Seb is currently
working to produce a document which
captures this important information as
accurately as possible.
• in October, we were able to present
support group information at an ARUK
funded conference in Manchester, where
once again, we spoke about the role of
support groups, how they operate and
the functions they can perform.
The presentations were recorded and will
soon be available via the website. Likewise,
the forthcoming November meeting will also
be recorded and subsequently uploaded
to the website. We would welcome your
feedback in terms of the live up streaming,
and whether you feel it adds to the value of
the provision we seek to make available.
There are plans for future engagement in
November with an organisation that make
Continuing Health Care appeals, with a
view to engaging in a 2 way exchange of
information which I hope will be mutually
beneficial to both organisations.
Two regional meetings have been scheduled
since we last met. The Berkshire regional
meeting attracted 25 people on October
14th, and there are already plans in hand
for a second meeting in the spring of next
year. I was delighted to be able to work
with Helen and Den Shepherd who are
longstanding support group members, and
Dr Jacqueline Hussey and Gill Stokes, staff at
‘Younger People With Dementia’-Berkshire,
and who are keen to take this initiative on
and incorporate future meetings within their
remit.
As well as these official support group
meetings, we enjoyed a social afternoon
tea event in September at the Hilton Double
Tree Hotel in London. This event coincided
with a visit from our Australian counterparts,
Terry and Wendy Barnett and indeed another
meeting with Terry Pratchett, who as I am
sure you know, has himself had to embrace
all that a diagnosis of PCA entails.
There have been exciting opportunities to
raise awareness of the support groups
across a range of platforms:
December 4th will see the first regional
PCA support group meeting in Cambridge.
Grateful this time to staff at Addenbrookes
hospital for the provision of a venue, I will
be working with support group member
Christina Ruse, whose sister in law has PCA,
to facilitate this meeting.
• in June, we were able to present at a
‘Journal of Dementia Care’ and UCL
jointly initiated study day on young onset
dementia, delivering a presentation
relating to the nature of support groups,
how they operate and the functions they
can perform.
Please let me know if you would like more
information about this meeting, or indeed
if you are in a position to help facilitate a
regional meeting in your area.
• during the summer of 2013, ARUK
mailshot copies of their ‘Alzheimer’s and
dementia: your questions answered’
booklet to every GP surgery in the UK.
These booklets are designed to be
made available in the waiting rooms of
GP surgeries, and we were delighted
to be given the opportunity to include
literature designed to raise awareness
of the diagnoses we support through the
support groups, as well as our support
group information within this distribution.
ARUK funded our printing costs for which
we are very appreciative.
Finally, there are two important recent
publications that I would like to bring to your
attention.
I strongly commend to you the recently
published Carers Trust report: ‘A road less
rocky: supporting carers of people with
dementia’. Those of you who are receiving
this newsletter via email will be able to
access it as an on line document (http://
www.carers.org/news/new-report-carerspeople-dementia-not-receiving-support-theyneed), but otherwise, as it is too bulky for us
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to incorporate or post, it is obtainable upon
request by writing to Carers Trust, 32–36
Loman Street, London SE1 0EH, Tel: 0844
800 4361. Although some of the findings are
based on a relatively small sample survey, it
does provide a wealth of information as the
result of an extensive and relevant literature
search, which is helpful. Having read through
the document, it is encouraging to see that
there is on-going research evidence to back
many of the objectives of the support group.
Forthcoming
Meetings
Fri Nov 8th 2013:
Wilkins Old Refectory, UCL, Gower St,
London, WC1E 6BT.
[Places will be limited to 50 for this
meeting] Coffee will be available from
10.30am. Meeting will finish by 2pm.
Lunch provided.
Fri March 21st 2014:
Wilkins Old Refectory, UCL, Gower St,
London, WC1E 6BT.
Coffee will be available from 10.30am.
Meeting will finish by 2pm. Lunch
provided.
Secondly, this resource to help school
children learn about dementia is of
significant interest, in part for the information
it contains but also for the references it links
to. I think this is a very important and a useful
resource – and we should advertise it as
widely as possible.
Fri June 27th 2014:
Wilkins Old Refectory, UCL, Gower St,
London, WC1E 6BT.
Coffee will be available from 10.30am.
Meeting will finish by 2pm. Lunch
provided.
Map details overleaf.
http://www.alzheimers.org.uk/site/scripts/
news_article.php?newsID=1826
I look forward to seeing you at future
meetings [listed over the page] or indeed
being in contact in whatever capacity is most
appropriate.
Afternoon Tea
Following the success of this event in
September, Di Garfield is organising
another tea at the DoubleTree by Hilton
West End on 12 December 2013.
If you would like to join the event, the
place to add names is via: http://www.
doodle.com/i3mcwekcwzs9wftt
where you can find the price and menu
details too!
Jill Walton
There is a carers-only mtg scheduled for:
Thurs Feb 13th 2014. This will be a shared
meeting with members from the FTD and
PPA support groups and will take place
in Wilkins Haldane Room, UCL, Gower
St, London, WC1E 6BT. 11am-2pm. Lunch
provided.
The topic for discussion at this meeting
will focus on the potential changes in
the intimacy of relationships following a
diagnosis of dementia.
Regional Meetings
Cambridge regional PCA Support Group
Meeting:
Weds Dec 4th at Addenbrookes Hospital
in Cambridge. 12noon - 2.30pm. Lunch
provided. Contact Jill for more information.
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directions
Directions for forthcoming meetings
Wilkins Old Refectory, University College London, Gower Street, London WC1E 6BT
Underground
travelling from south to north stop outside Warren
The closest underground stations to UCL are
Street station, about five minutes’ walk from UCL.
Euston Square on the Circle, Metropolitan and
Services to these stops include route numbers: 10,
Hammersmith and City Lines, Goodge Street
14, 24, 29, 73, 134, 390.
on the Northern Line and Warren Street on the
London Buses Infoline: 020 7222 1234
Northern and Victoria Lines.
British Rail
London Underground Infoline: 020 7222 1234.
London has many mainline rail stations. Most
London Underground - Did you know that you
of these are a short journey away from UCL,
can ring London Underground Customer Services
with the stations at Euston, King’s Cross and St
on 0845 330 9880 the day before you are due
Pancras being within easy walking distance.
to use a service? They arrange for someone to
British Rail Infoline: 0845 748 4950.
meet you in the entrance area of the station at
Parking
which your journey begins, accompany you down
UCL Helpline 020 7974 4651 or 020 7974 4655
to the platform and onto your train. They then
(Staffed Monday -Friday 9.00 am to 5.00pm)
radio ahead to an official at the relevant station to
We are very conscious that travelling to and
assist with any required platform changes or take
around London can seem a daunting prospect.
you up to ground level.
Be aware that pre-booked travel is generally
Buses
cheaper than tickets purchased on the day
UCL’s Gower Street site is served by many
and that the Myrtle Ellis Fund provides help
Transport for London bus routes. Buses travelling
with travel costs where required. Contact Jill for
from north to south stop in Gower Street,
further details.
immediately outside UCL’s main gate, while those
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news
Brain donation for PCA research
in their 40s, 50s and early 60s, however,
The brain is largely inaccessible during
people as young as 30 have received a
life, so only analysis post mortem can give
diagnosis. Many of these people will have
definitive clarification of the molecular changes
jobs, caring responsibilities (for young
underlying PCA.
children or older parents, or both) and
financial responsibilities. They are also
We are keen to understand better how
likely to be physically fit and active. These
pathologies causing PCA spread through the
considerations mean that the support
brain and the role played by different brain
and service needs for younger people,
pathways and connections.
their family and carers can be different
If you or your relative would like more information
to people who develop dementia at an
about the possibility of brain donation to support
older age. Commissioners and providers
PCA research, please feel free to contact Suzie
must consider and respond to the needs
Barker on 020 3448 3218 or at s.barker@ucl.ac.uk
of those with a dementia that experience
(Minutes concerning the discussion of brain
good physical health, have a young family,
donation at the PCA Carers’ Meeting in September
are in employment and hold financial
2013 are provided on pages 17 and 18).
responsibilities.
1.3Symptoms
Care Commissioners Report
Younger people tend to be affected by
Members of the PCA support group recently
rare types of dementia which present
contributed towards discussions with care
different symptoms to the more commonly
commissioners from the London Borough of
understood Alzheimer’s disease or vascular
Camden, with a view to expressing the care
dementia. Deterioration in visual perception
and service needs of younger people with
and speech, or changes in behaviour may
dementia. Support group meetings provided
indicate that something is wrong rather
the basis for a total of 4 similar consultations
than changes to memory. Some young
and the report of the Strategic Commissioner,
onset dementias can be directly inherited
which has been subsequently published, was
from one generation to the next, as with
directly influenced by these discussions. Extracts
Familial Alzheimer’s Disease. Table 1 in
from it are published below. You may find it a
appendix 1 explains the main rarer forms of
useful example of good practice to share with
dementia and their symptoms. Diagnosis
your local care providers and commissioners.
and management of symptoms for rarer
In addition, Jill is preparing a document for
dementias in younger people reflect
their difference; these take place via the
wider publication, as a means of disseminating
specialist commissioned National Hospital
the important information that was conveyed
for Neurology & Neurosurgery rather than
via these consultations as widely as possible.
1.
Background
1.1
Dementia is often considered an older
the Memory Service.
1.4 Current pathway gaps
person’s illness due to its prevalence in
locally provided services for people with
the older population. Yet, although rare,
dementia and these services tend to be
dementia can affect younger people. At the
tailored to the needs of older people. Due
moment there are an estimated 800,000
to the nature of their dementia and the
people with dementia in the UK and 1,600
age of onset, younger people’s needs are
people with dementia living in Camden.
not met by current provision; they require
Around 3% (equivalent to 50 people in
different support. There is an acknowledged
Camden) will be less than 65 years of age.
lack of appropriate services locally; the
1.2 Responsibilities and needs
Camden has a range of high quality,
Camden dementia strategy noted this
Most younger people with dementia are
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news cont’
and committed to address the deficit by
of the person’s young age or because
increasing choice and control for this group.
the health professional is unaware the
1.5 Engaging with younger people with
symptoms can indicate a rarer dementia.
dementia & their carers
General Practitioners, those working within
In order to learn more about how Camden
the NHS and social care, and others best
can meet the needs of those with a
placed to identify young onset dementia (for
diagnosis of a young onset dementia
example, opticians), have little awareness
and their carers, two members of the
of these conditions. Without a diagnosis,
commissioning team attended four support
it is not possible to access much needed
group meetings for these groups. The
treatment and support.
- …..preventing access to care and support
meetings were hosted by the National
Hospital for Neurology & Neurosurgery
post diagnosis
(which is part of UCLH and hosts the
2
national diagnostic unit for cognitive
forms of dementia are poorly understood
disorders) and took place between January
by professionals, who often incorrectly
2013 and March 2013. Commissioners also
assume they know the person’s needs
received contributions made at meetings
once they hear there is a diagnosis of
that took place when they were not in
dementia by applying their knowledge of
attendance but this work was discussed.
Alzheimer’s disease. Many carers reported
Comments made during conversations
poor communication between GPs, NHS
with individuals and group discussions are
staff and social care is a major barrier to
summarised in section 2 of this report. The
receiving support; people are in the position
report has also benefited from the input of
of having to balance navigating a complex
clinicians from the National Hospital.
health and social care system with their
The views of younger people with
caring responsibilities.
dementia and their carers
Recommendation 1: raise awareness
This section describes the experiences of
about rarer forms of dementia among
people with young onset dementia and
GPs, opticians and other health and care
their carers; it identifies the gaps in service
professionals, using our access to the GP
provision and unmet need as identified
website, working with the RNIB, targeted
by attendees at support group meetings.
literature, presentation at GP locality
The groups were open to people with a
meetings and working with social care staff.
2.2 Information at diagnosis and support post
diagnosis and their carers from across the
diagnosis
nation. The majority of people we spoke
with were not from Camden, but everyone
Service users and carers report two
spoke of similar experiences and these are
areas where patient experience could be
described below.
improved post diagnosis: availability of
2.1 Lack of awareness in health and social
information and follow-up support.
care professionals
- Information at diagnosis
- … preventing diagnosis
The needs of younger people with rarer
People would like to receive more
It is not uncommon for people to attend
information at diagnosis; information that
multiple appointments before receiving a
would help them to better understand
correct diagnosis, young onset dementia is
the illness and what to expect at different
rarely diagnosed via a memory test. Often
stages, and information that would help
it is family members who are the first to
to explain the condition to children and
notice that something is amiss. Dementia
friends.
may not be considered initially because
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- Support immediately after diagnosis
special interest groups and community
People reported that, after receiving a
activities, and feel they are contributing and
diagnosis, they were not informed of,
part of a community by meeting people,
or supported to access, services that
volunteering, working and earning money.
might help them. Camden commissions
Younger people expressed interest in taking
comprehensive diagnostic and advice
part in physical activities such as walking,
services from C&I and Age UK Camden,
swimming, gardening and other sports.
but Camden patients with a young onset
It is proposed that personal budgets would
dementia diagnosed at the National
enable younger people with dementia to
Hospital for Neurology & Neurosurgery are
access individually tailored support. People
not routinely referred to this service.
who are FACS eligible could access a direct
- Support for carers
payment or managed personal budget.
The role of a carer of someone with a
Many younger people with dementia will
young onset dementia is demanding; many
not be FACS eligible; they may, however,
carers are of working age and required
make use of a personal health budget.
to stay in work for financial reasons as
Here is an example of the difference a
well as care for other dependents. Carers
personal health budget made to someone.
need support to continue to fulfil this role,
including access to counselling from the
for over 41 years, he’s aged 68, loves his
time their loved one is diagnosed. Few
family, music and football. Since developing
carers are linked into local carers’ services
the illness, his family has witnessed his
or befriender schemes that could provide
personality change; his withdrawal, loss of
support.
confidence and extreme anxiety.
Recommendation 2: Reviewing the
What helps Frank is familiarity, routine, living
pathway for those with a young onset
at home and consistency. He has been
dementia to ensure those with the illness
assigned a personal health budget (PHB)
have access to information. This will involve
and uses it to bring these elements into his
working with a range of stakeholders, in
everyday life, in a way that enhances his
particular the National Hospital, Memory
experience of his hobbies and interests;
Service and Dementia Advisor, to identifying
using part of it to purchase a sky + box.
where access to information, advice,
Since receiving his budget in 2009, he has
befriending, support and carer services
been stimulated. He is able to choose the
currently open to those diagnosed via the
programmes that he wants to watch, when
memory clinic can be made available to
he wants to watch them. His anxiety has
those with a young onset dementia. It will
eased and his unpredictable behaviour has
also involve ensuring access to appropriate
decreased. He no longer requires a care
employment and financial advice, tailored
manager or consultant and his medication
to the needs of this group.
has been massively reduced.
2.3 Choice, control and suitable services
Frank* has young onset dementia. Married
Prior to receiving a health budget Frank
Traditional dementia services tend to be
attended a daycentre that did not provide
designed with an older client group in
the consistency he requires, in fact those
mind. They are often not suitable and do
providing the service did not understand
not appeal to younger people who have
his needs. The centre provided generic
a different set of interests and aspirations,
activities, operated 8 am – 5 pm only
and experience a different set of symptoms.
and resulted in lots of anxiety. During his
Someone with a young onset dementia
attendance at the centre Frank’s medication
often wants to access a range of existing
and needs increased. Attendance at the
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day centre cost £28, 500 whereas the sky+
information and support. Following
box cost £35.
this review, exploring piloting the
*Name changed for anonymity purposes
introduction of personal health budgets
Other provision that may deliver
for this group when the mechanisms
greater support and enable increased
are available during 2014/15 – Pathway
independence include access to telecare
review to be completed by April 2014.
services, such as panic buttons, that mean
carers can leave the cared for person at
home and know they can get help when
needed.
Building on recommendation 2, following
the review of the pathway commissioning
will explore the introduction of personal
health budgets for those with a young onset
dementia.
2.4 Physical environment
The visual difficulties that accompany
some young onset dementias impact on
a person’s ability to negotiate the physical
environment, and therefore ability to access
community facilities. The design of public
and community spaces can exacerbate or
assist mobility and independence. Small
adaptions such as reducing the amount of
glossy surfaces, having different coloured
toilet seats, allowing use of disabled
parking spaces and understanding that
sometimes a carer must accompany
someone into public toilets or changing
rooms (for example at the swimming
pool), could make a difference to quality
of life. Camden is creating a dementia
friendly community in Kilburn, this project
is focusing on improving the inclusion and
quality of life of people with dementia in
the Kilburn area, the needs of those with a
young onset dementia are reflected in this
pilot.
3.
Summary of recommended actions
This report recommends:
• Raising awareness of rarer forms of
dementia among GPs, opticians and
other health and care professionals – to
be completed by April 2014
• Reviewing the pathway for those with
a young onset dementia to ensure
those with the illness have access to
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ARUK funding
Tim Shakespeare awarded ARUK funding
Tim Shakespeare has recently been awarded funding from Alzheimer’s
Research UK to undertake a research project at the Dementia Research
Centre, UCL, in order to better understand Posterior Cortical Atrophy. He
describes the research he plans to do below (this is adapted from a blog
post Tim wrote for http://www.dementiablog.org/).
As readers of this newsletter know, the visual
symptoms in PCA aren’t caused by damage
to the eyes, but by damage to areas at the
back of the brain called the parietal and
occipital lobes. This damage means the brain
can’t interpret visual information from the eyes
properly, making complex visual tasks like
driving and reading particularly difficult. Other
skills that rely heavily on the back of the brain,
for example spelling and calculation, can also
be affected early in the disease.
the connections between them (known as brain
networks). This project provides the opportunity
to investigate changes to these connections,
and how they differ between different forms of
Alzheimer’s.
What’s involved in this project?
The brain is made up of a layer of ‘grey matter’,
containing the main cell bodies of brain cells,
and underneath that is the ‘white matter’ –
the bundles of cables that provide crucial
connections through the brain. We know a lot
about how the brain’s grey matter is affected by
Alzheimer’s, but much less about changes in the
white matter.
Why is it important to research PCA?
Practically, we need to research PCA in order
to improve the diagnosis and care available
for patients and their families and to improve
awareness and understanding among
healthcare professionals. Because PCA is
thought to be rare and typically symptoms
start in the 50s or 60s (earlier than usual
for Alzheimer’s disease), diagnosis is often
delayed and problems can be misattributed to
anxiety, depression or problems with the eyes.
The hope is that by carrying out research and
communicating with doctors who may come
across patients with PCA, it will become easier
for people to get an accurate diagnosis quickly.
This project will use a particular brain imaging
technique called diffusion tensor imaging that
can detect changes in the white matter of the
brain. By comparing people with PCA, typical
memory-led Alzheimer’s disease and healthy
individuals, and investigating changes over
time, we hope to improve our knowledge of
how the disease spreads through the brain. A
better understanding of how white matter is
affected in Alzheimer’s may provide new ways
of measuring how well therapies work, and
could lead to a better understanding of what
makes people vulnerable to Alzheimer’s.
Scientifically, PCA raises an interesting
question - how can Alzheimer’s disease affect
different people in such different ways? This
project is a unique opportunity to study PCA
and examine what happens in less typical
forms of Alzheimer’s. We want to understand
why different areas of the brain may be more
susceptible to Alzheimer’s, which could explain
Who, where, how much?
I’ll be carrying out the work at the Dementia
Research Centre, part of the Institute of
Neurology at UCL, under the supervision of Dr
Sebastian Crutch and Professor Nick Fox. The
Alzheimer’s Research UK research fellowship
provides funding of £152,746 to cover research
costs for three years.
rarer forms of the disease, but also help to
explain more generally why some people are
vulnerable to Alzheimer’s and some people
aren’t. Recent evidence suggests that the
disease may target particular brain areas and
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fundraising ventures
We acknowledge that the activities mentioned below are but a
representative selection of numerous noble efforts that many people are
involved in to raise funds for the support groups. Thank you to everyone
who has made a donation of any sort or size to the group…we are
always appreciate and very grateful.
Grace Bulmer, whose father has PCA, ran in the
Leeds half marathon this year. The ignorance
about PCA amongst her friends and colleagues
made her keen to raise awareness about the
disease as well as raising funds for the group.
‘Vienna, City of Dreams’, was a fundraising
concert which Sarah Poole, whose father
also has a diagnosis of PCA participated in in
October, raising over £250 for the support group.
Sarah Poole and Sarah Doogan sang soprano,
accompanied by Howard Dyer on piano and
David Heyes, Ben Groenevelt, Eloise Riddell,
Josie Jobbins on double basses. The programme
brought together a selection of popular dance
music and operetta arias culminating in Rudolf
Sieczvfski’s Vienna - City of Dreams.
10
your contributions
‘Dark Place’ theory: Bill McCammon comments
that when his wife Mags was assisted by carers,
she would sometimes scream when being turned
over in bed, to be bathed. The carers intimated to
him that this was due to muscle contractions as
her body was beginning to close down. He feels
this was not necessarily the case, but rather that
Mags was ‘in a dark place’, and that being rolled
over gave her the sensation of falling (dreaded
spatial awareness), hence the screams. Bill says
‘I wish I had this information beforehand, and we
could have held her for reassurance.’
engage in different techniques within the sexual
relationship has frequently been referred to. Carol
Duvall, whose husband recently died, explained
the importance of feeling that she was’ still there’
for Allen in respect of his mental and physical
sexual needs.
On the other hand, others in the group have
highlighted the difficulty they have in maintaining
intimacy within the relationship when roles have
so drastically changed, and the balance within
the partnership feels so changed.
The carers meeting on Feb 13 2014 will seek
to address some of these issues. This meeting
will be joint venture with carers from the
Frontotemporal dementia support group and
other MEF support groups.
Jill replied with regards to Bills ‘dark place’ theory
….’certainly in my work as a general nurse on
the wards I was trained to explain to the patient
everything you were intending to do to them, as
it can be extremely frightening to feel oneself
moving, but not to know where to or by what
means this is happening. For sure, people may
feel that they are being tipped off a ledge into
a place of undeterminable depth, by the simple
process of turning someone in bed to relieve
pressure.
Housing and care costs: This website looks a
good starting point for information about financial
issues relating to care. It covers many other
issues which may be of concern to support group
members.
http://www.housingcare.org/finance-advice.aspx
Obviously, the need is complicated further when
the person does not necessarily comprehend
all that is being said, nor remember where
they are nor appreciate their care needs…
making the need to attend to clear and careful
communication all the more important.
It fits that with the visuo spatial compromise
experienced by people with PCA…this
phenomenon will be even more pronounced, and
not, I am sad to say, limited to the experience
of turning in a bed, but in many other areas of
movement too.’
Anti -psychotic symptoms: …medical staff don’t
seem to mention the psychotic difficult symptoms
ahead of them arising. Although they may be 5
or 6 years away..it would be better to know they
may come, and to have some idea of how to
manage them.
Special Support Service at airports: ‘Having
just been to Italy, we used the Special Support
Service from Luton airport which was excellent. I
would recommend this to anyone travelling with
a person with special needs, not just those who
are physically disabled. I ticked the ‘Intellectual’
impairment box.’
Dementia Friends: Roger Kelly asks if anyone
signed up as an Alzheimer’s Society Dementia
friend, and if so, what happened. ‘I did ……but
have had nothing except a series of emails telling
me how well it was going!!’
Intimacy in personal relationships: Several
support group members have commented on the
changes in the intimacy of personal relationships
following the diagnosis of PCA. The need to
11
Research Opportunities
Research Opportunities in Cambridge
As mentioned earlier in this newsletter, we are delighted to be able
to offer a regional support group meeting on Dec 4 2013 at the
Addenbrookes hospital site in Cambridge.
Dr Laura Hughes is based at Addenbrookes
Hospital and will be joining us at that meeting to
speak about the PCA research she is involved in.
She explains the project in general below:
‘We are a group of neurologists and
psychologists in Cambridge who are
researching ‘neurodegeneration’. Our research
includes Alzheimer’s disease, Progressive
Supranuclear Palsy, Corticobasal Degeneration,
and Frontotemporal lobar degeneration.
We use different types of brain scanning to
help us understand these illnesses better.
One type of brain scan we use is called
‘Magnetoencephalography’ or ‘MEG’ for short.
The MEG scanner is very different from the more
common MRI type brain scanners. It is open and
quiet, and patients sit up comfortably in a chair
with just the top of their head in the scanner. The
scanner then measures the tiny magnetic fields
generated by the brain as patients see, hear,
think, or read. For our current research we have
been asking patients to come to Cambridge for
one afternoon and have the MEG scan while
listening to sounds and looking at some pictures.
These tasks are quite easy but enable us to
examine how the brain is processing different
types of information, and how this can be
disrupted by a neurodegenerative illness. We are
hoping to include more patients in our study,
particularly those who may have posterior
cortical atrophy. If you might be interested in
taking part I would be happy to send more
information to you. Please contact me at the
MRC Cognition and Brain Sciences Unit on:
01223 355 294 extension 222.
12
Action for Blind People
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.
Obviously, some areas of their expertise will be
more relevant than others to people with PCA.
‘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
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.’
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.
13
minutes
PCA Support Group Meeting July 5 2013 in UCL Wilkins
Old Refectory
Living Well with Cortical Visual Loss
have sound leisure interests and simply
Venue and Welcome
require supported independence: that is, a
1. Once again, the “en–suite” facilities of
home from home and not necessarily 24/
Wilkins Old Refectory at UCL were ours. We
hour/ residential care. In practical terms,
welcomed 6 new members, feeling sure
that means a living space plus bathroom
that they would be at home here and we
and kitchen.
look forward to meeting them again next
time. A very big thank you to University
accommodation, each of them has a
College London for the use of their facilities
stimulating outside view.
and to all who set up the room plus buffet
2.6 There is a need for a joint space (a café)
lunch and those who set up the on-line
and adequate space for leisure activities.
links, which allow us to welcome Skype
The location should give easy access to a
attendees who join us UK wide and
small market town.
world-wide. This time there was an added
2.7 The Young Dementia UK Homes project
feature, an opportunity to hear the meeting
aims to provide a building that is
in full via live web streaming: see www.ucl.
striking and attractive, with ground floor
ac.uk/live. Jill’s welcome included news
accommodation for all. It will be anti-
of the ARUK mailshot which is mentioned
institutional, with different wings giving
in the welcome section of this newsletter.
individuality. A meandering layout is
She was delighted to have negotiated the
preferred to a linear one.
opportunity to include our support group
2.5 Apartments offer 1 or 2 bedroom
2.8 The shared space will be in the center,
information within this UK wide distribution.
containing a therapy space, an office area,
Designing Accommodation for
a café and 2 sitting out areas. The current
people with young onset dementia.
building will have 3 wings, 3 spaces and
Jane Norman, Director Young Dementia
3 destination points. Way finding will be
UK Homes and Matthew Balaam of Oxford
distinctive for each of these, but will not lead
Architects
straight out onto the communal space. It
2.1 Jane and Matthew presented the
is important to have a variety of rest and
Oxfordshire project to build innovative
accommodation for people with early onset
relaxation spaces.
2.9 Each apartment will be quite large, with its
dementia.
own garden space and a distinctive use of
2.2 This pilot project was set up in November
2012 with Jane as director, following a
colour and decoration.
Questions from the floor.
substantial donation. Oxfordshire has no
Q1 There are considerable problems
residential accommodation for pre 65 year
in finding a suitable quality venue for
olds with dementia except old people’s
respite care. Many activities offered are
homes: as a result, patients tend to stay at
inappropriate and undignified. Support via
home for far too long.
homes for the visually disabled is urgently
2.3 157 people were diagnosed with early onset
needed.
dementia in the county, but this is the tip
A. Some extra care schemes are available
of the iceberg - Jane estimates that 2,500
in London. Oxfordshire has currently no
actually need care.
data re respite care needs for EO dementia.
2.4 People with early onset dementia are alert,
We hope to fund one flat for respite care.
14
minutes cont’
Q2. Why is the lay out not circular?
3.2 A multi-disciplinary approach to care needs
A. Different materials and colours
is necessary as patients cannot always find
plus different objects are shown to
the words to describe what they need. The
be successful aids to circulation.
project will scientifically test suggestions
Toilet doors, though, are differently
for visual compensation, with the aim of
coloured from the rest of the décor.
finding solutions which help the majority of
Q3. Who will occupy the second bedroom?
people. An example might be testing the
A. A carer plus occupant in cases of
effectiveness of reflective tape applied to
physical handicap. Or patient plus a close
door frames.
family member, so as not to lose contact.
3.3 The project will examine and adapt
Q4. Are the flats for purchase or rental?
other low cost orientation aids such
A. Rental is planned for the project launch.
as the role of movement lighting
A lot will depend on the stage of the
(as in aircraft) to help orientation.
disease on admission. A surviving partner
3.4 The project will assess the reaction
would need to move. This is not yet a
of patients to sight impairment and the
tested market: it is hoped to allow a high
practical effects it has on daily living.
degree of freedom about when to come or
Group sessions.
leave. A stay of up to 9 years is envisaged.
4.1 Group discussion sessions were led by
Q5. How will extra care be managed in the
members of the National team to share,
later stages?
develop and extend the ideas already being
A. We hope to respect patient’s/
implemented by members of the Support
carer’s wishes. A care wing is planned.
Group. A selection of the ideas chosen by
Q6. Is there no macroscopic plan? Will this
the groups from their discussion follows.
plan remain an individual initiative?
4.2 Colour marking or colour coding of objects
A. The dialogue with the homes and
in daily use aids perception. Light coloured
Community Agency is ongoing. Social
lining in purse. Coloured plastic covers on
Involvement funding is required.
keys. A coloured rim on a plate indicates
Q7. Are any other such projects planned?
the edge. WC walls in neutral colour -
A. 65 000 people have early onset
different from the WC itself. Never all white!
dementia nation-wide. We estimate being
WC door differently coloured from other
over-subscribed, with a possible 400-600
doors: needs to open outwards. No mirrors
people needing special accommodation.
in the WC: PCA sufferers can interpret their
Other examples are Bluebird Homes, The
own image as meaning someone else is
Peaceful Place in Essex and The Courtyard
using the loo. Low voltage “nightlights” in
in Suffolk.
electrical sockets can guide the way to the
Q8. When will your accommodation be
WC at night.
available?
4.3 Facilitating/Simplifying the use of controls.
A. The selection process is still to be
Microwave for warming up food pre-set
finalized, though an important part of it will
and turned on from wall switch. Or coloured
be referrals from the Young Dementia Trust.
marker on the ON switch on the machine.
We aim to be up and running in 18 months.
Ditto for TV remote. Or a pre-programmed
Compensating for Dementia Related Visual
selection of entertainment, with TV left on.
Impairment. Dr Sebastian Crutch.
Use of voice recognition technology, e.g.’
3.1 Seb presented information about a new
Dragon’ voice technology on phones and
project running with Brunel University. In
addition to people with PCA, it is recognized
mobiles.
4.4 Simplifying Social events. Where possible,
that a high percentage of people with
typical Alzheimer’s disease will also develop
limit the numbers to maximum 6.
4.5 Calming and reassuring measures. Make a
visual impairment.
joint tape of patient’s and carer’s memories
15
minutes cont’
in the early stages of the disease: regular
playing returns calm and familiarity during
stress moments later on. The use of an
hour timer. When the carer is working from
home, the silence can make the house
seem empty: knowing that the carer will
come when the timer goes off is very
reassuring.
16
minutes cont’
PCA Carers’ Meeting 20 Sept.2013
Venue and Attendees: The Dementia Research
there may be implications for other family
Seminar Room in the National, Queen Square is
members.
intimate, well equipped and familiar to us all. It is
2
easy to reach (with Jill’s map) by public transport.
2.1 Animal models cannot accurately represent
There were 32 attendees and 4 via Skype: 2 from
the UK, 1 from North America and 1 from Australia.
The Importance of human tissue.
human brain tissue.
2.2 New technologies are progressing rapidly
We were happy to welcome 2 new members,
and becoming increasingly detailed and
hope that they enjoyed the sessions and will join
accurate.
further meetings as time goes on.
Examples are: RNA (coded from DNA) for
Programme: Our agenda included “Brain
expression profiling. Proteomics (the study of
Donation For Research After Death”. Zeinab Abdi’s
proteins) leads to the discovery of bio-
talk concentrated on the clinical implications of
markers. In-depth DNA studies Target
organ donation and Susie Barker explained the
validation for new drugs.
administrative and care aspects of such
3
into:-
donations, followed by a presentation describing
the stages of PCA, by Dr Seb Crutch.
Future New Research areas include studies
3.1 Intercommunication pathways between
visio-spatial areas on the left of the brain
1
Zeinab Abdi
Some members have already arranged
3.2 The role that length plays in the pathways
brain donations: some will have been
from the front to the back of the brain in
approached by UCH to consider such
PCA.
donations. QS already have 7 PCA brains in
1.1
and language.
3.3 Hypo-metabolism via PET scans to examine
the brain bank and 70 other dementia
the reduced function in frontal areas (which
brains.
control eye movement).
The reasons for Brain donations have largely
3.4 Most research candidates are, or have
to do with obtaining clinical accuracy in a
been, patients at QS, so researchers have
particular PCA patient and providing
detailed access to records. International
accurate samples for research.
research continues into plaques and tangles
1.2 The brain itself is virtually inaccessible in life
since it is enclosed by the skull. Biopsies in
in the brain, but numbers remain small.
4
Roger, who was due to give his personal
life are hence impossible due to the high risk
experiences of arranging a donation, was
of damage and infection: they are only
unable to attend due to illness. His
attempted in very rare emergency situations.
experience (relayed via Tim) emphasized the
1.3 Analysis post mortem gives the only truly
need to plan donations early: his personal
accurate data on the molecular
decision was very late. There may be a
mechanisms which affected the living brain
problem if the subject dies at home, since
1.4 Donation enables larger scale research to
the body will need to be refrigerated within
see who develops dementia, why and
4 hours. Undertakers will need to be told of
when.
this in advance, if at all possible, as they will
1.5 The isolation of Amyloid-B peptides (Glomer
need to organize a visit to the mortuary. Do
1984) and the identification of Tau Mei can
be further researched.
register and do carry a card!
5
1.6 Diagnostic accuracy in life is 76 – 87%
accurate: only after death is complete
Suzie Barker: Procedures and
Administration
5.1 The Dementia Research Centre (DRC)
accuracy possible.
has close links with the Queen Square
1.7 Where the dementia diagnosed is inherited,
Brain Bank (QSBB). Many patients and
17
minutes cont’
research participants known to the DRC
if there is no registration, donation can still
are registered as brain donors with the
take place if appropriate. Wherever possible
QSBB. Potential donors are usually known
it would be best to have a discussion with
to the DRC through the clinic or through
Suzie during office hours but of course this
research but there may be other situations
may not always be possible. The brain bank
where registering as a brain donor would
co-ordinator is available to give advice out
be possible. Suzie is happy to receive
of hours. Brain donation does not usually
enquiries and to help facilitate registration.
affect funeral arrangements, however, if for
Individual circumstances are varied and
religious, or other reasons the funeral must
not all potential donors are suitable for
take place quickly, it may not be possible for
brain donation – however all expressions
brain donation to take place.
5.5 Feedback to the family: A detailed report
of interest will be considered on a case by
case basis and every effort will be made
will be sent to the family, usually around
to respect the wishes of the donor and
6 months after donation. The reports are
their family. Individuals who do not have a
sometimes complex and the family will
diagnosis of dementia may also register for
always be offered the opportunity to discuss
brain donation.
the report with the brain bank or with the
5.2 Registering as a brain donor is much like
any organ donation – the person with a
clinical team at the National Hospital.
5.6 ** Since the meeting there have been some
diagnosis can declare their intent to donate
minor changes to the registration process.
and to sign an intent to donate form** (or
This does not alter anything for anyone who
their relatives may do so on their behalf). Not
has already registered as a brain donor
having registered in life does not preclude
but may slightly alter the process for new
brain donation; if the family know that this is
donors. Suzie will provide an update at a
what the person with dementia would have
future meeting.
wanted brain donation may still go ahead.
If you have any queries about brain
At the time of the death, the family (next
donation please contact Suzie Barker at the
of kin) will need to sign additional consent
Dementia Research Centre – 020 3448 3218
forms. The brain bank will co-ordinate this
or suzie.barker@ucl.ac.uk
and will liaise with the funeral director. It is
6
important to know that registering as a brain
The post lunch session concerning the 7
Stages of PCA was led by Dr Seb Crutch.
donor does not mean that donation has to
take place.
He presented his draft of the 7 stages
of PCA, based on those described for
5.3 Other ways to register as a brain donor:.
classic Alzheimer’s disease. The attendees
There are a number of other brain banks in
examined the drafted text together,
the UK and a collaboration of brain banks
sharing ideas and experiences of how the
- Brains for Dementia Research. [http://
behaviours and observations fit together.
www.brainsfordementiaresearch.org.uk/].
There was also discussion of where the
These alternatives may be relevant to some
boundaries between the stages actually
potential donors. Suzie is happy to discuss
lie. The discussion was recorded, so that
and advise.
Seb can review the draft document after
5.4 Specifics of QSBB registration: A declaration
consulting with colleagues in the light of
of intent to donate and donor registration
today’s meeting. He will be circulating a
forms are completed and returned to Suzie
second draft to attendees for comment
who will forward to QSBB. The brain bank
when it is completed.
will send a donor card and information
about what to do when the donor dies. Even
18
Celia Heath Sept 2013