[PCA]
SUPPORT GROUP
newsletter
Welcome to the [PCA] Support Group Newsletter Issue 12, September 2011
Welcome to the latest edition of the PCA Support Group Newsletter.
There have been 2 meetings of the PCA Support group since the last
newsletter in June.
The first of these was in May, and was
the principal ‘Carers only’ meeting. 21
people attended, and the feedback was
positive, with requests for further such
meetings to be arranged.
Next PCA Meeting
Friday 18th November 2011
(RSVP to Jill Walton)
11am - 2pm (half hour coffee break/
The meeting on July 1st saw a return to the
usual meeting format at Red Lion Square
and attendees heard presentations from
two speakers: Pam Turpin spoke about
adapting the home for people with visual
impairment, and Rob Lindsay went on
to talk about issues pertaining to the
necessary steps one can take in order
to protect oneself and loved ones, both
financially and legally, before ill health
makes it impossible to do so.
snack lunch included)
We are grateful as ever to Celia, who
despite not being present at the July 1st
meeting has produced her usual excellent
minutes. They are attached at the end of
this newsletter.
or email jill@pdsg.org.uk
VENUE: Main Hall, Conway Hall, 25 Red
Lion Square London WC1R 4RL
We are pleased to confirm that Dr Angus
Kennedy will be speaking: “How to
be a neurologist in one easy lesson!”
Dr Kennedy was previously a research
fellow in the Dementia Research Centre,
and has years of experience in the field.
Please confirm your attendance:
Jill Walton 07592 540555
Myrtle Ellis Fund
The PCA Support Group is generously supported by the Myrtle Ellis Fund, as part of the
National Hospital Development Foundation (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 7829 8724.
directions
Directions for meeting on 18th November 2011
Conway Hall, 25 Red Lion Square London WC1R 4RL
Underground
Parking
Nearest station is Holborn (Central and Piccadilly
There is metered parking available in Red
lines) approx 3 min walk. Also within reasonable
Lion Square and adjacent streets, unrestricted
walking distance are Chancery Lane and Russell
weekdays after 6.30 p.m., Saturdays after 1.30
Square.
p.m. and Sundays all day. Please note some
London Underground Infoline: 020 7222 1234.
parking areas are for “Residents Only” and other
Buses
The following buses pass through or near
Holborn stopping just a few minutes walk to
the Hall:
from Oxford Street: 8, 25, 55; 98 (terminates in
Red Lion Square)
from Euston Station: 59, 68, 91, 188
from Waterloo Station: 1, 59, 68, 188, 521, 243
from Victoria: 38 (Theobalds Rd, rear side of Hall)
London Buses Infoline: 020 7222 1234
British Rail
Excellent connections via numerous bus routes
from most central London main line stations.
British Rail Infoline: 0845 748 4950.
local restrictions. For info ring LB Camden 020
7278 4444.
contributions
Your contributions
Members of the PCA Support Group have the opportunity to contribute
to the newsletter, and thereby ask questions, share experiences, helpful
hints, or stories which may benefit the wider group. Updates on issues
relating to raising awareness of PCA or other local initiatives which
members are aware of could also be of interest .Published pieces could
range from snippet ‘one liner’s’ to more detailed commentaries….
whatever feels most appropriate!
‘Mind the Gap’……
One partner of a PCA sufferer has found that
Thank you!
with advance notice, rail companies will meet
…to Clare Webber who has kindly
a train at a pre arranged carriage and provide
offered to help with the formatting of our
ramps to enable safer movement on and off the
newsletter publications. Also thanks to
train. This has notably helped with the specific
Clare for the support group logos and
difficulties they were having as a result of not
PCA identification/awareness cards, all
being able to judge where to place feet and legs,
of which will help to raise the profile of
and inadvertently aiming for the gap between the
the support group, and thereby we hope,
train and the platform, as opposed to minding it!
reach more people.
Care Agencies…..
Does anyone have a particular agency they
would recommend when looking for live in care?
A member of the group is putting out feelers for
provision around the Hull area.
My name is
I have an
illness and
need help with
l
Please send articles/responses for inclusion in
future newsletters to Jill Walton, 22 Brushwood
Other medica
conditions
Allergies
Drive, Chorleywood, Herts, WD3 5RT or email
them to jill@pdsg.org
PCA Identity Cards
In previous meetings and discussions, we
agreed that it would be useful for people with
PCA, and their carers, to be able to carry a small
card which would alert others to the fact that
there may a need for increased understanding,
attention or patience. We are delighted to be able
to tell you that these cards are now available!
Please contact jill@pdsg.org.uk or telephone
me on 07592 540555 if you would like one! We
will be including them in with all new member
welcome and information packs from now on!
I will also bring a supply to the November 18th
meeting.
o might help
Someone wh
Name
I have
me
[PC A]:
Daytime tel.
posterIor co
rtIcal a
Evening tel.
trophy
this affects m
y vision and th
inking
I would apprec
Doctor
iate your help
please read th
is card for mor
e
information on
how to help
thank you
Posterior cortic
al atrophy [
PC A] is a progress
condition which
ive
affects the back
of the brain. It
most common
is
ly caused by Al
zheimer’s disea
leads to problem
se. PCA
s seeing what
and where thing
are, and can als
s
o affect memor
y and thinking
For more infor
.
mation please
visit:
www.pcasupp
ort.ucl.ac.uk
fundraising events
This summer has seen 2 of our support group members, along with
family and friends, involved in fundraising activities!
CELIA CLIMBS…
Celia Heath climbed Kinder Point, with her
daughter, in memory of her husband Gerald
who suffered from PCA. Ruth Rimmington,
whose mother has PCA, has trained for and
will be running a half marathon this September.
The National Hospital Development Foundation
[National Brain Appeal] is the umbrella charity
under which Myrtle Ellis Fund is registered. Glen
Pickard is the Fund Raising assistant affiliated
Celia writes:
It was a splendid experience and we even had
sun for the trek across the peat plateau to the
summit. We also had some questionable support
from Fa, an adventurous sheep, who thrust her
woolly head between our shoulders at lunch time
and swiped a sandwich!
Donations are going well, and in fact we have
already exceeded our target…with current funds
raised standing at £790!
to the charity and is able to help and advise on
fundraising issues.
Celia Heath is well known to many
He is contactable via glen.pickard@uclh.nhs.uk or
within the group…not least for her much
by telephoning 0203 448 4724.
appreciated and valued minute keeping!
Anyone wishing to donate monies to the Myrtle
Her husband Gerald, who suffered from
Ellis Fund can do so by writing a cheque to
PCA, died earlier this year. Celia and her
National Brain Appeal: Myrtle Ellis Fund, and
daughter Jane climbed Kinder Point in
posting it to National Brain Appeal, Box 123,
August. Thank you to both of them….and
Queen Square, London, WC1N 3BG. Don’t forget
‘Well Done!’
to gift aid where possible!
fundraising events
Thank you to Ruth Rimmington for this description of how PCA has
affected her family, and of course for running for us!
RUTH RUNS….
Mum was eventually diagnosed with PCA about
7/8 years ago. Because so little was known
about the disease it was a very frightening
time, particularly for her. My dad took early
retirement from work to support her during the
early stages.
My relationship with her has always been close
and one where we would see or speak to each
other almost every day. I have witnessed firsthand “my mum” slowly slipping away, losing
her independence and at times not wanting to
go on; heart-breaking to say the least.
She then finds the strength to carry on and
thankfully has my dad who now cares for her
24/7. Each day they go to a local café near to
where they live and spend their time talking to
the many friends they have made over the last
few years. This she says has kept her going.
It would be true to say that as a family we felt
isolated due to the fact that so little is known
about this awful disease, consequently there
was no support out there. It was a case of
going out there to find help. Also it was difficult
explaining to family and friends what mum had
and how it affected her because we weren’t
sure ourselves early on.
It was a relief to find the PCA support group
on the internet. I tell mum and dad about it.
At the start of this year, I decided to learn to
run in order to get myself fit with my husband
and a few friends. We all enjoyed it so much;
lost a few pounds and felt so much better we
decided to enter the Robin Hood Half Marathon
in Nottingham on 11 September this year. I
immediately decided that I wanted to raise
money for PCA to highlight the disease and
make a financial contribution to the invaluable
work of the support group.
Ruth has successfully completed the Robin
Hood half Marathon - Congratulations!
Provisional meeting dates
We are trying to reduce our meeting costs by securing a meeting venue within the University
building, which is available to us for no charge. In order to achieve this, I have had to book ahead,
so want to let you have provisional dates booked for 2012…They are February 3rd and June 22nd.
Venue details will follow nearer the time, but pencil the dates in now!
RNIB
supporting blind and
partially sighted people
RNIB Helpline: 0303 123 9999
Email: helpline@rnib.org.uk
The Royal National Institute
of Blind People (RNIB) is the
UK’s leading charity offering
information, support and
advice to almost two million
people with
sight loss.
They help anyone with a sight
problem - not just with braille and
Talking Books, but with imaginative
and practical solutions to everyday
challenges.
Whilst the visual disturbances caused by Posterior
Cortical Atrophy are not due to deterioration in
the health of the eye, the RNIB does have some
helpful advice and innovative resources which our
members may be interested to explore.
Of particular interest is their ‘Everyday Living
And of importance on a different note altogether
is the advice they provide around registering as
blind or partially sighted. There are particular
benefits which people become eligible for once
they are registered as blind or partially sighted.…
travel concessions, welfare benefits, council tax
reductions etc.
People with PCA are potentially eligible to
register .We would encourage people to pursue
registration, but it does need to be certified via an
ophthalmologist. Practically, it is often most useful
for the GP to refer locally, and where possible
prime the local clinicians as PCA is so distinct
from the more conventional peripheral visual
patients they typically see.
We should however issue a note of
caution that the Support Group is
not able to act as the referral point
for these appointments. They need
to be triggered via a local clinical
route.
Catalogue’, which lists an extraordinary range
of gadgets and appliances for people with
reduced sight.
RNIB’sWebsite: www.rnib.org.uk
end of life issues
Call it what you may, planning for the inevitable decline towards end of
life is often painful and traumatic. When the person you are planning with
and for has dementia, then the process can be even more complicated.
Living with Dementia June 2011
In a recent Alzheimer’s Society publication,
The General Medical Council has written advice
[Living with Dementia June 2011] an article
and policy documents with regard to Advance
entitled ‘Being Prepared’ outlined the benefits
Planning and is apparently aware of the need
to thinking and planning ahead.
to incorporate the very specific issues that arise
Putting people with dementia more in control of
their lives, reducing stress on families and carers
later down the line and increasing the chances
of a ‘good death’ are amongst the benefits listed.
Peter Ashley, a member of the Dying Matters
Coalition, and himself diagnosed with Lewy Body
Dementia is quoted as saying “People are scared.
They don’t want to talk about dying. They think of
when a person has dementia. They can be
accessed via:
www.gmc-uk.org
Go to the home page and then select ‘Guidance
on Good Practice’, then enter ‘Advance Directives’
into the search keywords box at the top right of
the page
today, not tomorrow. Thinking about what’s going
ON ANOTHER NOTE…
to happen later when you lose your capacity can
the Alzheimer’s Society public policy team
be a disincentive to planning ahead. But if people
wants to hear about your experiences of
can overcome these problems they might be able
planning for end of life, end of life care
to see the merit in it”.
itself and the emotional and ethical issues
As a result of several conversations over recent
weeks with members of this and other support
groups, we wish to bring to your attention the
following publications:
www.dyingmatters.org.uk
https://www.respectourwishes.com/
www.endoflifecareforadults.nhs.uk/
publications/planningforyourfuturecare
Also, the Alzheimer’s Society have just
published factsheet 463: Advance Decision
this beings up. If you would like to be
involved, please contact
Martina Kane via martina.kane@
alzheimers.org.uk or call her on
0207 423 3580.
key scheme
National key scheme for toilets for disabled people
One of the practical, social problems facing carers of and people with
dementia is managing the use of public toilets.
These are rarely unisex thereby making it
difficult for a partner to assist with any practical
help required during toileting activities. The
visual problems experienced in PCA can make
this even more complicated. Access to a
toilet designed for disabled people, providing
more room and provision to assist can be of
enormous benefit.
RADAR believes that everyone who experiences
ill-health, injury or disability should have the same
freedom and independence as all other citizens.
One important part of freedom is having the
confidence to go out, knowing that public toilets
will be available that are accessible and meet
your requirements..
If accessible toilets for disabled people do have
to be locked, providers are asked to join the NKS,
which involves fitting standard locks to their toilets
and making keys available to disabled people.
This has now been adopted by over 400 local
authorities Almost 8000 toilets have been fitted
with the NKS lock. The scheme is also used by
a number of other organisations including the
National Trust, transport undertakings, shopping
centres and some pub companies. Purchasing
a NKS key, therefore allows access to NKS public
toilets throughout the country.
For those who are unable to obtain an NKS key
in their own locality, RADAR supplies keys at a
charge of £3.00 (if collected and on declaration
of a disability), £3.50 (if supplied by post and
on declaration of a disability) or £4.11 (if the
declaration is omitted)
The required declaration is simply a stated
reason outlining why you are requesting a key…
for example: ’I would like a key for my wife who
suffers from Posterior Cortical Atrophy, a form of
dementia’ .
REMITTANCE can be sent to:
RADAR, 12 City Forum, 250 City Road,
London EC1V 8AF.
Alternatively contact RADAR via:
Tel: 0207 250 3222
Fax: 0207 250 0212
Minicom: 0207 250 4119
E-mail: radar@radar.org.uk
pca carers support group mtg
PCA CARERS SUPPORT GROUP MEETING
20th MAY Dementia Research Centre, Queen Square.
Background: This is the first
meeting where carers could meet
together with medical staff and
researchers to discuss amongst
ourselves three important issues:
the various reactions we have
experienced to the diagnosis of
PCA, the practical difficulties for
daily living and how this changes
as the disease progresses and
the sufferer’s increasing need for
ever more care and supervision
develops.
to speak openly for the first time in a supportive
The need for carers to meet without partners
Minutes and Themes.
has been felt for some time. It is hoped this will
enable us to talk in more detail and with greater
environment of this kind. For other carers it was
a chance to update on ongoing experiences in
a relationship that has developed over the years
that the main support group under the Myrtle Ellis
Foundation has been in existence.
In practice, some carers attended for the first time
after a PCA diagnosis, or in the early years or
months following it: advice from more seasoned
carers “at the coal face” is often invaluable for
carers to understand themselves as well as those
they care for.
We are very appreciative of the generous amount
of time given by the busy Hospital staff and
carers, who had set aside work and, in some
cases, also faced a long journey to attend.
1.1 Seb and Riitta opened the meeting and
introduced Jill Walton who has recently joined
honesty about what we face, than is possible
the National Team to support other Dementia
when the sick partner is present and hence
Support Groups at the National and to
needing care and attention.
facilitate the setting up of further Support
Many sufferers are well aware of what is wrong
Groups nationally. The programme was for
with them, but not all can face the full facts about
each carer to introduce him/herself and to
how PCA develops without becoming clinically
speak briefly about those themes that were
depressed. It is not realistic, or indeed practical,
most important for their individual current
for all sufferers to face up to the latter stages of
circumstances, and then following coffee,
the disease: for many carers the burden of that
we would choose one theme for further
knowledge falls on them alone. The original
conception of the group was to provide a forum
for 2 groups of carers:-
discussion.
1.2 Seb asked permission to record details
attendees’ individual experiences; these
1. Those whose partners were too ill to attend the
would not be transcribed and only used
main meeting,
anonymously for research purposes within
2. Those whose partners had died, or whose
the hospital. This was agreed. Because of
partners had had to accept a place in full time
the intimate nature of many of the shared
care away from home.
experiences, we also agreed after the coffee
break that the minutes would contain themes
Attendees: 21 people attended altogether:
only for future discussion and no references
Medical Staff and Researchers from the National,
to individuals.
Partners of PCA sufferers and other family carers
and partners. The meeting was also open to the
professional residential carers of our members.
The meeting lasted over 2 hours and proved a
very valuable opportunity for many attendees
2.
Themes arising:Providing care for sufferers.
2.1 The need for a support organisation. Thanks
were expressed to the Ellis family and The
Myrtle Ellis Foundation.
2.2 The need for full information about what
4.2The need to build a network of carers
social services can offer and how to push for
and organise stimuli for the sufferer. Most
what is appropriate for an individual. Failure
sufferers are conscious of what is wrong but
of some professionals to ask what sufferers
do need appropriate activities in their day.
actually want/need. Duplication of work by
4.3 Feelings of inadequacy and guilt in carers.
different service organisations.
4.4 The difficulties presented by contrasting
2.3 The lack of effective communication between
different Hospitals.
2.4 Anxiety and uncertainty about coming
financial cuts as well as the huge variety
of what help is available locally across the
tastes and lifestyles between generations,
when the carer is a son/daughter.
4.5 Son/daughter needing to sell house to
finance care.
4.6 Dealing with symptoms, e.g. Sun-downing
country. e.g. there are relatively few Admiral
(the feeling of anxiety caused by the onset
Nurses.
of night), inability to socialise, physical
2.5 Concern about the slowness of local
symptoms becoming intrusive, e.g. when
response to mental illness and the poor
the hands don’t work together. Dealing with
standard of what is sometimes delivered.
week-ends. Lack of sleep in carer or sufferer.
Often sufferers are physically healthy and
4.7 Suggestions for solving some of these.
not all brain function is impaired: this is not
Memory clinics and the advice they give.
always sensitively handled. Fear of sufferers
The need to get Talking Book status – which
of leaving home, especially if they have
is only available for the blind. The Dragon
had negative experiences in care homes/
Programme (Internet) which provides voiced
hospitals.
instructions.
4.8 Problems of failing sight, e.g. inability to read
3.
Coping with the final stages.
3.1 Fear about organising the final stages in the
above circumstances.
handwriting.
4.9 The effects of other illnesses. The PCA brain
cannot cope with these well, cannot run the
3.2 How and when to plan this stage.
body in unusual circumstances. The body
3.3 Concern about financing help: possible loss
is already physically stressed and easily
of the shared home.
3.4 Legal advice. Coping with the distressing
mental and physical repercussions of those
final stages.
3.5 The advantages of seeking counselling. The
need to do so early, even when very busy
caring.
3.6 The speed of the final deterioration,
sometimes following an apparently
succumbs to fresh illness.
4.10 Considerable improvement though, if e.g.
rheumatic pain is managed.
4.11 Physical activity cannot cure or improve the
condition, may make the sufferer feel better.
4.12 Carer taking over some of the professional
role of the sufferer (e.g. answering readers’
letters). Sense of being able to give back
something to a relationship.
successful
And relatively untroubled period of life.
3.7 The need to provide for the carers pension
separately.
5.Diagnosis.
5.1 The problems of professionals reaching
a diagnosis. Considerable professional
unawareness nationally of P.C.A. which
4.
Coping with ongoing care.
4.1 The feeling that the related carer can be
imprisoned by the illness inside their own
home. Hence the need for more than one
carer so that carers can have breaks.
can lead to delays in diagnosis and the
prescription of suitable medication.
5.2 PCA symptoms are often present many
years before help is perceived as necessary.
Sufferers can mask deficiencies.
6.
Seb’s summing up of part 1.
8.
PCA takes over all parts of life; there is a
8.1 Sufferers must make the decision
“Living Wills”
huge need for medical, financial and social
themselves and any wishes must be
target setting.
expressed when
They are of sound mind: Hence, early and
Break for coffee.
legally.
8.2 A form (so called purple form) is available via
7.
End of life planning was chosen as the Issue
for the second part of the meeting.
the internet, but a doctor’s advice is needed
8.3 Concern was expressed about how one
7.1 Sudden deterioration can force the issue.
could convey one’s wishes when seriously ill.
Unexpected illness/events (see 4.9) can
8.4 Not everyone has children to take this
overload both partners and the limits of
on. Medic alert is one solution. As are
coping are reached.
the Emergency Data-link fridge canisters
7.2 The disease progresses evenly, but our
ability to cope with it can suddenly fail.
provided by the Rotarians.
8.5 Living wills remain guidelines and hence are
Rather like a person suddenly dropping a
one part of decisions made at the end of
heavy bag.
life, see 7.5 above.
7.3 There is a life expectancy 10-14 years from
8.6 Currently, assisted suicide is not legal in
the first symptoms, but we now know they
the UK, leaving partners of those who do
start a decade before the first symptoms
wish to give this way of death serious
show.
consideration in a very hard place. There
7.4 Sufferers lose the ability to express wishes
was some private discussion of this issue.
and needs towards the end, or may express
them in a coded form that others do not
9.
End of meeting.
understand.
A show of hands from all present, i.e. those
7.5 Mood swings can be very marked on
who had not had to leave to catch trains,
different days: from the sufferer wishing
showed a strong majority of attendees
to give up and die to having days he/she
overall in favour of further meetings of this
enjoys.
group.
7.6 Hence the need to discuss end of life
issues early, soon after treatment starts. It
can all update contact details.
is important to involve the family, especially
those who may need to take decisions. And
the need to work out coping strategies. Or at
least to have the conversation.
7.7 Different people have different levels of need
to know all the facts: Some sufferers and
some family members are unable to face
end of life issues at all.
7.8 If the need to make a medical life saving
decision is reached unexpectedly, a simple
question can sometimes unlock ideas and
understanding. e.g. asking the doctor,
“What would you do if it was your father or
mother?”
7.9 When the end of life is inevitable, palliative
care of the dying is highly skilled and does
lead to a peaceful and dignified end.
Jill will be sending round a form so that we
Celia Heath June 2011.
pca support group mtg
PCA SUPPORT GROUP MEETING
1st July 2011 at Red Lion Square
Venue: I am writing these minutes from 4 MP3
files recorded during the meeting, as I was away
and more secure.
1.2 Her research therefore had 2 aims: 1) to
in Germany 01.07.11. It was lovely to hear all of
raise awareness of the needs of the visually
your voices and to try to identify them via the
impaired, whether that sight loss is due
internet: but please bear with me if the minutes
to PCA, Macular Deterioration, Vascular
are not as detailed as usual! I shall do my best.
Dementia or Alzheimer’s disease. And 2)
The venue and some of the difficulties it presents
to tackle the aim of making the life of the
are well known: however, it is both close to the
sufferer more comfortable and hence of a
National Hospital and central for those travelling
higher emotional quality.
to London from afar.
1.3 Caring for a visually impaired person is a “big
stage” event. Every sufferer and every family
Programme: Riitta Kukustenvehmas welcomed
is different, hence interpreting each person’s
the attendees, beginning with news of members’
needs in an individual task that requires both
fundraising activities. It seems we are following
creativity and common sense.
in Seb’s footsteps after his successful assent of
1.4 Most people prefer to be in their own homes
Mont Blanc last year and there has been both
because they contain familiar clues and
a sponsored swim and a cycle ride- London
memory props. The aim is to help them enjoy
to Paris, which have raised £4,500 altogether
life there for as long as possible.
for the Myrtle Ellis Fund. My own more modest
1.5 A shared life between carer and patient can
climb up Kinder Scout will be on 14 August: I will
even lead to a closer relationship, a new
be sending you all a flyer. Today’s programme
understanding of that person, e.g. a son or
included 2 talks: Pam Turpin “Adapting the home
daughter will learn for the first time of the
environment to cater for the needs of people with
childhood of a parent.
visual impairment.” And Robert Lindsay (Elderly
1.6 Pam first asked “Beryl” what home meant
Client Consultant) “Protecting you and your loved
for her. Her reply was “It is safe, it means
ones, before it’s too late.”
happiness and I can do what I want, when
I want.” Beryl needed to be helped to see
Adapting the home environment to cater for the
and to avoid falls. Technical surveillance and
needs of people with visual impairment. Pam
various gadgets had the dual function of
Turpin.
helping her and informing family and friends
1. Pam began her illustrated and very practical
of her needs.
demonstration and talk by describing the
motivation behind her research into this
Underpinning Pam’s talk was the need to ask
topic. It was fuelled by her responsibilities
patients themselves about their needs for as
as a carer in looking after members of her
long as possible, and not merely to talk about
family and the varied kinds of dementia they
them with other carers and professionals.
suffered from.
2. Ground rules and practical suggestions.
2.1 Patients are distressed and confused by too
Her work underlined the fact that each
much external noise. Even in care homes a
sufferer is an individual, with individual
constantly playing TV can lead to
needs.
deterioration. Switching it off, means sufferers
1.1 Many of the adaptations made to homes and
are enabled to talk. Checking that hearing
care homes need a creative attitude towards
aids are on and functioning properly, clearing
these individual needs and fears, in the hope
ear wax both mean that patients are at
of making patients’ lives more comfortable
ease listening. All family members need to
know how to set and maintain hearing aids!
prompt sufferers to take medication etc.
Echoes are to be avoided: softer furnishings
4.4 However, some gadgets e.g. level indicators
are preferable to hard floors.
for cups, talking books or talking watches
2.2 Glare can make conversation a misery. Multi
may have a limited life. Comments from the
function glasses, e.g .the kind available from
floor reminded us that a patient’s declining
cycle shops with interchangeable lenses
motor skills may not keep pace with them.
for different conditions, can calm a patient.
Individual practical solutions will eventually
Having the right lighting can eliminate
prove more adaptable. No one idea will fit
shadows, which may appear threatening
everyone.
when the correct perception of them is
4.5 In bathroom areas, all white fittings can
deteriorating. Keeping windows clear of
cause serious confusion. A coloured
nets and foliage, lightening the wall colours
toilet seat aids perception and helps
can both enhance natural light and hence
visually impaired people to maintain
improve the mood of patients - and their
personal hygiene in the WC and stop the
carers.
embarrassment of missing the loo. Sudden
3. However avoid too radical a change of décor
patches of dark colours can look like water
which can mean that home is no longer
and patients may be afraid of treading on
recognisable to patients, especially those
them.
who live alone: When no-one is there to
4.6 Mirrors need to be carefully sighted, as
give immediate reassurance, people can
patients can mistake their own reflection for
think they are in the wrong house. So, keep
someone else using the WC or bathroom.
objects in familiar places, especially phones
The same is true of reflections from windows
and torches. Keep wall colours similar and
at night: if curtains are impracticable, glass
replace only necessary furniture, so that the
can be treated with special adhesive film
house smells the same.
available from window manufacturers.
3.1 Worn carpets are a danger, especially on
4.7 Always ask patients about colour preferences
stairs: stair edges may need to be marked.
for as long as possible. Opticians may
However when replacing carpets, remember
be able to say which colours can best
busy patterns can confuse people with sight
be perceived. (The Iris Murdock centre in
problems. Dark colours and shiny floors can
Cambridge has advice and demonstrations
appear to be wet and cause panic.
about colour use).
4. Bathrooms, Dining rooms and Kitchens.
4.8 Aids for professional carers may need to
Be ware of too much white. Add colour
be visual - not all of them share the same
contrasts, e.g. coloured china or coloured
language with patients. Particularly the
adhesive bands on familiar objects, coloured
administration of medication needs to be an
stick-on edges to chairs etc all improve
individual matter. (We heard an example of
declining perception of objects and their
one patient who dropped tablets unless they
positions.
were given one at a time. A visual prompt
4.1 When the memory is failing, you may need to
of a hand with just one tablet sorted the
remove cupboard doors, so that patients can
problem).
see what is inside rather than trying to
remember it – and opening everything.
4.2 Talking stickers (which can be individually
recorded) can assist perception of what to do
The legal situation: protecting your loved one
before it is too late. Robert Lindsay.
Robert’s talk reviewed the three options of
with everyday objects. E.g. “Jenny, shut the
power of attorney that have developed over
door!”
the years. Members have generally made
4.3 The Blind Society in York demonstrates
a number of such objects. Dosset boxes
provision and found it helpful to review
the various options they may currently be
dealing with. For the recently diagnosed, the
7. Lasting Power of Attorney (LPA) is the latest
presentation was a most helpful introduction.
version, again improving protection against
As Pam had pointed out, no patient has the
improper use.
same needs as any other and carers are
7.1 There are two versions, Power over financial
often a patchwork institution - and not, as
affairs, including property and Power to
Robert pointed out, like a Henry Ford motor
decide over issues of health and welfare. This
car: no one size fits all!
latter applies only if the patient is in the care
5. General Power of Attorney (GPA). All powers
of the LEA (as opposed to being in private
of Attorney have to be given by the one
care) and allows carers a protected voice
relinquishing financial (or for LPA, medical)
in choosing when and where care will be
control over their affairs and it is necessary
effected, e.g. in choice of hospitals and care
to register the document for acceptance
homes.
by banks etc. The process can take up to 8
7.2 It is wise to choose attorneys carefully and
weeks. It carries a £400 application fee plus
to include a replacement attorney, if the
£825 in solicitors fees.
situation changes for the designated attorney.
5.1 Information on the financial affairs of the
An interesting example came from a single
person concerned must be up to date.
parent, who wanted her daughter involved
5.2 In GPA a person gives power to a trusted
but also felt the need to ask a close friend to
individual to act on their behalf. It is of limited
join her, as this person knew her day to day
time use, the applicant must have the mental
wishes more intimately.
capacity to understand the application. Their
7.3 Again with both LPAs a pre-defined list must
power ends when the mental capacity is
be notified and registered. Part A is to be
gone. Problems have arisen when the trusted
signed by the donor, provided he/she is able
individual has intentionally or mistakenly
to do so. There is provision for someone else
abused the situation.
to sign on their behalf, if the donor becomes
6. Enduring Power of Attorney (EPA). This
incapable: e.g. a provision can be included
version was introduced in 1986 specifically
to support people with dementia and mental
“only when I lose my memory”.
7.4 The Health and Welfare LPA only applies
incapacity. (820 000 currently have dementia
when the person becomes too ill to act and is
in the UK: 2,000,000 altogether have mental
being funded publicly. It exists to prevent such
incapacity).
things as forced admission to an unsuitable
6.1 It gives the trusted person the power to act
care home. Attorneys are compelled to act in
financially on behalf of the sufferer. It has
the person’s best interest. Two people can act
immediate effect, but must be registered with
on the sufferer’s behalf- severally or jointly.
the Office of the Public Guardian.
Robert’s advice was to keep the provision
Information will be sent to members of a pre-
clear and simple in all applications!
defined list, so care needs to be taken in
7.5 A Health and welfare LPA can include a
drawing this up, since not all members of a
person’s wishes for the end of life. Although
family agree together and objections can
medical practitioners have the final say, they
delay the process, which normally takes
are obliged to consult with family members.
6 weeks. It can be difficult to act in the
interim (e.g. to sort out a lost bank card) but
experiences from the floor showed action can
generally be achieved even then.
6.2 As with all applications for Power of Attorney,
it is important to act soon after diagnosis, so
that the patient and the carers have a clear
idea of his/her wishes.
Celia Heath July August 2011