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. There have been two PCA
Support Group meetings since the last
newsletter was published. Following
a change of venue, made necessary
in light of the number of people who
confirmed their likely attendance, we
found ourselves on 22 January 2013, in a
rather formal lecture theatre in the Institute
of Neurology….fitted with all mod cons,
including an examination couch…but not
the most ‘cosy’ of venues to date!
Having braved the snow and freezing
temperatures, we welcomed Barbara
Pointon MBE as a guest speaker to
our carers’ meeting, along with two of
our own group members who kindly
prepared and delivered very informative
presentations.
Barbara spoke about her experiences as
a carer for her husband Malcolm in a talk
entitled: ‘Offering enlightened care and
support to people with dementia’. Barbara
is the widow of Malcolm Pointon, who
was diagnosed with Alzheimer’s disease
at the age of 51 and died in 2007. She
knows first-hand the struggle that many
Newsletter Issue 16, June 2013
people face to achieve the necessary care for
people with dementia and has contributed to
the debate on appropriate dementia care at
many levels.
Currently very active as a Government adviser
on dementia and an advocate for dementia
care, she is quoted as saying: “I now feel
I might be in a position not to just whinge
about problems but to do something to put
things right - it’s such a wonderful legacy.”
For her work campaigning for better care of
those with Alzheimer’s disease, Barbara was
included in the Queen’s Birthday Honours
of June 2006 and awarded the MBE. Her
presentation to the group was based on one
which she has given in many venues and to
multiple audiences.
Roger Kelly and Peter Ledger are both
members of the PCA Support Group and we
are grateful to them for the information they
shared at the meeting, sadly, borne out of
personal experience. Roger Kelly provided
an informative guide to the maze one must
negotiate in “Non Means Tested Benefits”.
Peter Ledger followed by presenting a very
personal account of his journey through
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
1
intro cont’
the process of recognising the need for
nursing home care and indeed then
finding appropriate such care for his wife
Margaret; “Identifying a Care/Nursing Home
and accessing State Benefits - a personal
experience.”
A ‘PCA Research Update’ was presented by
research fellows from the Dementia Research
Centre: Tim Shakespeare, Ross Paterson
and Keir Yong, followed by question and
answer session. Details of the research they
described are included in this newsletter.
The meeting was enriched by the provision of
written diary accounts from Bill McCammon
and David Moon. Bill’s wife Pat sadly passed
away in 2012 and we thank him for his
candid sharing of the events during the two
years prior to her death in July 2012. David
cares for his wife Pat at home and above all,
wanted to share the value he and Pat have
enjoyed as a result of a dictaphone recording
they made about their lives together.
After lunchtime refreshments, we
reconvened in smaller groups to contribute to
a discussion about the particular service and
care needs of younger people with dementia
and, more specifically, with PCA.
This discussion was preceded by a brief
explanation from Robert Holman, a mental
health commissioning officer in the London
Borough of Camden, about the care
commissioning process that exists there.
Feedback from the discussions was shared
at the meeting and will be collated, together
with feedback from similar styled sessions
that have since been conducted with other
young onset dementia support groups.
To quote David: “About a year ago, when Pat
was still very lucid, we sat down with a little
dictaphone and made a 20 minute recording
about our lives together. I acted like an
interviewer but basically we talked about all
we could remember about our lives together.
How we met, our marriage, jobs, homes,
children, holidays, Pat’s books and so on.
The final report will be made available via the
support group networks.
Having recently been to visit an inspiring
team of people at a ‘Young People with
Dementia’ group in West Berkshire, I am very
excited at the prospect of a regional PCA
support group meeting in Wokingham in the
autumn. This meeting would be supported
by staff as well as patient representatives
and could hopefully be scheduled on a
regular basis. More details to follow in the
next newsletter, but do visit www.ypwd.info in
the meantime for more information about
this group.
The recording has proved to be a lifeline
and I must have used it a hundred times.
Whenever Pat ‘loses it’ I play the tape and
nine times out of ten it brings her back.
She even participates by intervening and
joining the discussion again as we listen. The
technique has brought her back to ‘reality’
time and time again.
I STRONGLY recommend this to all carers who
care for someone who is still sufficiently lucid.
It will prove invaluable to them in the coming
months”.
The results of the ‘My Requests’ workshop
which Steve Lines facilitated during the
Feb 2012 meeting have now been collated
and incorporated into a new PCA support
group leaflet: ‘Living with PCA’. There will
be copies available at the July meeting.
Alternatively, visit the website to download or
contact Jill if you would like to receive one via
post.
Both diary accounts are available to read in
this newsletter, with the kind permission of Bill
and David.
The 22 March 2013 meeting saw a
welcome return to Wilkins Old Refectory,
where despite one or two PA system
difficulties (for which I apologise), we
engaged in a somewhat more interactive
presentation style than has previously been
the case.
2
intro cont’
I have been encouraged on several counts
recently, following my engagement with local
and charitable organisations for visually
impaired people. It would seem that there
are a plethora of local, often volunteer-led
services that provide a range of valuable
facilities: recording local newspapers in an
audio format; providing volunteers who will
visit a person in their own home and assist
with tasks that require visual accuracy; and
completing paperwork or reading necessary
documents.
Forthcoming
Meetings
5 July 2013:
Wilkins Old Refectory, UCL, Gower St,
London, WC1E 6BT.
Time: 11.00am-2.30pm. Coffee available
from 10.30am. Lunch included. Map
details overleaf.
Living Well with Cortical Visual Loss
The agenda includes a presentation by
Jane Norman, Director, Young Dementia
UK Homes, the sister charity of Young
Dementia UK. She outlines their plans to
build a new home for young people with
dementia in Oxfordshire, incorporating an
‘extra care’ model to provide individual
apartments for around 12 people.
Researchers at the Dementia Research
Centre have submitted a grant application
regarding the development of aids
and strategies for helping people with
dementia-related visual impairment
including PCA. It would be useful to
use this meeting to engage in further
discussion to gather ideas about what
would be most useful to patients and
carers.
20 Sept 2013:
Carers’ Only Meeting, Seminar Room,
Dementia Research Centre, 8-11 Queen Sq,
London WC1N 3BG:
Time: 11am – 2pm. Lunch included.
November 2013:
Date and venue to be confirmed
21 March 2014:
Wilkins Old Refectory, UCL, Gower St,
London, WC1E 6BT.
Time: 11.00am-2.30pm. Coffee available
from 10.30am.
Apparently, many of these local initiatives
were established after the First World War,
when the blinding effects of mustard gas
became a very real and tragic consequence
for many returning soldiers. My route into
many of these services has been via the
helpline at the RNIB accessed via helpline@
rnib.org.uk or by calling 0303 123 9999.
We look forward to welcoming you to the
next support group meeting on 5 July 2013,
details of which are listed below and to
receiving any contributions you may wish to
make to future editions of the newsletter.
Jill Walton
3
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
4
your contributions
Blog spots
Pam O’Donnell attended the last support group meeting via Skype and is keen to promote activity
on various blog spots. She writes:
“This is the guest blog site for Scientific America .The blog just started and they have been posting
looking for information:
http://blogs.scientificamerican.com/mind-guest-blog/
Two of my tips for caregivers got posted on a blog:
http://unfrazzle.blogspot.com/2013/02/tips-from-fellow-caregivers.html
Attached is a story from 2006 about Dee Bingham and her Dr: Bradley Boeve the Chair of Behavioural
Neurology at Mayo:
http://www.keloland.com/newsdetail.cfm/posterior-cortical-atrophy/?id=49126”
5
your contributions cont’
Depression in carers
This BBC report from the Royal College of General Practitioners may be of interest:
http://www.bbc.co.uk/news/health-22478706
NB Please also see the article by Susie Henley later in this newsletter, which is the summary of a
presentation she recently gave.
Personal Independence Payment to replace DLA
You can make a claim for Disability Living Allowance (DLA) until 10 June 2013. From this date, you will
have to make a claim for Personal Independence Payment (PIP) instead. This is because PIP replaces
DLA for new claimants from 10 June 2013.
Personal Independence Payments involve a more objective assessment, with a face-to-face
consultation with an independent health professional for most people and include regular reviews
so individuals continue to get the right support. PIP is based on an assessment of individual need.
It will not consider what impairment an individual has, labelling them simply on this basis. Instead
it will consider how their impairment affects their life, considering their ability to carry out a range of
everyday activities.
Information will be gathered from the individual, as well as healthcare and other professionals
who work with and support them. Most people will be asked to a face-to-face consultation with an
independent health professional as part of the assessment process. The health professional will ask
questions about the claimant’s circumstances, their health condition or disability and how this affects
their daily life.
For more information visit: https://www.gov.uk/.../introducing-personal-independence-payment
6
your contributions cont’
‘Access to work’ grants
An Access to Work grant helps pay for practical support so you can do your job. You may be able to apply if
you have a disability, health or mental health condition. The money you get can pay for things like: specialist
equipment, travel when you can’t use public transport and a communicator at a job interview.
How much you get depends on your circumstances. You won’t have to pay any money back and it
won’t affect your other benefits.
Laura Knight has recently applied for the grant for her father and writes:
“This information might be useful for some people who can still contribute to the workplace, but can’t
drive and struggle with certain tasks. We are currently going through the process with dad and so far
they have been really good and have offered to pay for taxis to work, digital voice recorders and voice
activated software and even a support worked to come in a couple of hours to help dad with tasks he
struggles with.”
The website to visit for more information is www.gov.uk/access-to-work/overview
Tinted lenses
Following on from previous newsletter comments regarding the potential value of tinted lenses for
people with PCA, Pam O Donnell has provided the following 2 website references, which answer some
of the questions raised in respect of how different coloured lenses affect vision:
www.trails.com/how_8622_select-sunglasses-fishing.html
http://www.wileyx.com/catalogs/pdfs/2012_Motorcycle_Brochure.pdf
In general, amber and yellow lenses filter out blue light to increase contrast and improve your ability
to focus in hazy conditions. Pink lenses improve contrast and depth perception by absorbing light in
foggy or gray conditions. Gray lenses sacrifice contrast to allow for accurate colour perception. Brown
lenses combine the advantages of gray and amber lenses, but to a lesser degree than the originals.
Purple and blue lenses attract low-contrast blue light, so they’re only useful in fashion settings.
However, the exact effect of colour lenses in PCA remains to be tested.
7
dementia and carers
The impact of a diagnosis of dementia on carers
Dr Susie Henley is a research and clinical psychologist at the Dementia
Research Centre, UCL. At a recent meeting she spoke about the complex
process of accepting a diagnosis of dementia in a friend or family
member. She listed some of the processes this inevitably entails and also
used the session to explain a new counselling service which she is to
be a part of, which will offer a series of counselling sessions for people
diagnosed with dementia at the National Hospital for Neurology and
Neurosurgery.
Whilst this service will not in the first instance
be available to all, it is hoped that results will
show that people who receive the counselling
service benefit from it in a significant way, and
that a case can be made to roll the service out
more widely.
Coming to a peer support group is one way of
realising that it is normal to feel like this, and
that many other carers also have those feelings
from time to time. Sometimes you can manage
these feelings by finding some time to yourself, or
letting off steam with a friend, or going out for a
walk, but if they become overwhelming and stop
you from getting on with what you want to do,
there are lots of options that have been shown to
be helpful.
Susie’s talk embraced the impact of a dementia
diagnosis on carers and some resources that
carers might find useful.
There are over 670,000 carers for people with
dementia in the UK and the amount of free
care they give saves the state around £8 billion.
Often carers experience difficulty in getting a
diagnosis for the person with dementia, because
the symptoms aren’t well-recognised, and then
find they are “left alone” after diagnosis when
in fact they really need on-going support and
information. And whilst it can be a relief finally
to be given a name for what’s going on, it can
also be very upsetting and make the future seem
uncertain.
Your GP should be able to refer you to a form of
counselling, of which there are different types to
suit different people, and your GP should also be
able to discuss whether some medication might
help lift your mood, particularly if you feel very
down or worried.
More and more research is focusing on carers
and their needs. Key messages are that carers
need on-going support after diagnosis, and that
healthcare professionals must recognise that the
needs of the carer and the person with dementia
change all the time.
Susie touched a bit on the social dilemmas
that arise when you care for someone with
dementia – friends and neighbours often can’t
see that anything is wrong, don’t understand
what help you might need, or in the later stages
just assume that there’s no point visiting. She
suggested that it is important not to assume
that everyone will react like this though, as this
can put you off asking for any sort of help; do
try to ask friends and neighbours for what you
need and see what the result is. The emotional
impact of dementia is also hard – many people
go through a wealth of feelings from guilty, angry
and annoyed, to sad and despairing.
National guidelines for carers (NICE) now say that
all carers should have an assessment of their
needs (which includes assessing for and treating
psychological distress if necessary), and should
be given education about dementia, peer-support
groups and information about benefits and legal
matters. Ideally a lot of this initial information
should be provided by an NHS clinic, although
feedback from carers shows that services
really vary in how much they understand about
dementia and what information they can offer.
Susie listed a number of websites, both NHS
and voluntary, that have information about
8
dementia and carers cont’
legal, financial, and social support that is
available. The importance of peer support
groups came up several times, and was
reinforced during the meeting as the most
useful answers to questions people had
at the end of the talk were from the other
carers there; and it is great that people
feel able to share their experiences with
each other at the meetings.
Susie has also given her permission to
reprint this letter which was published
in the Times on April 23 2013 . It was
writtten by her in response to an article
the previous week citing Dr Chris Fox
of UEA saying that there was really no
point diagnosing dementia early as it just
meant people lived in misery.
9
more news
Update from Down Under By Terry Barnett
You may remember reading in a previous newsletter about our contact
with a group of people with PCA in Australia, and their attempts to start
a support group akin to the model we have trialled with our group. Terry
Barnett was the founder member of this group, after first contacting us
approximately 2 years ago following his wife’s diagnosis of PCA. Terry
writes:
“I have now had around 40 PCA-connected
people make contact with me via the
pcaaustralia website. We are gradually finding
people but the same problems of geographic
spread and different stages of the disease mean
forming support groups is difficult. Still, we are
moving in the right direction.
So I worked with her and she made contact
with Dr Seb and your information, and now we
have it. It is not that the information on it is new
but finally having a reference to PCA on the Alz
Aust website (nothing existed previously) is a
breakthrough. It will also be an extremely helpful
tool for staff in Care Provider facilities who can at
last have something put straight into their hands.”
One major breakthrough has been the
development of a Help Sheet for PCA within
Alzheimer’s Australia. Just fortunately a
Researcher in Alz Aust is a friend of my daughter
We are looking forward to touching base with
Terry and his wife during a forthcoming trip to the
UK. You may be interested to visit their website at
and wanted to do something for us and PCA.
www.pcaaustralia.org
PCA Website
day; of those, approximately 7 have visited the new
website before, whilst 8 of them have not and so
are regarded as new enquirers.
The new PCA support group website format allows
us to see how many people are visiting it. At the
moment there are around 15 people visiting it every
10
research update
Research Updates:
The following summaries are synopses of the presentations given by Tim,
Keir and Ross at the meeting on 22 March 2013.
Tim Shakespeare
We hope that by collecting this information and
trying our best to measure it, we can better
communicate the problems that people with
PCA face to other people. Also, by following
people up and seeing how these things change
over time, we hope to get a better picture of the
effects of Posterior Cortical Atrophy at different
stages. This should help us answer common
questions about how the disease progresses
and when people experience different
symptoms.
I presented initial results from a questionnaire
that we give to people who know someone
with PCA well, usually a friend or a relative.
The questionnaire has lots of questions about
different symptoms and tries to build a picture
of the things that people with PCA have difficulty
with. By doing this with people over subsequent
years we hope to get a better picture of the
stages of PCA.
The questionnaire we use was developed by a
group in Cambridge and has questions that fit
Keir Yong
into different categories, such as everyday skills,
orientation to time and place, memory and
mood.
I am currently doing a PhD focusing on
dyslexia in PCA, with a particular emphasis
on using what we know of problems in vision
and reading to inform the development of
computer-based aids that may facilitate
reading in PCA. At the moment I am looking at
how altering the presentation of text can help
avoid problems reported by individuals with PCA
when reading, such as losing their place on the
page, skipping lines or finding it hard focusing
on the appropriate word in a sentence.
We found that only a small proportion of the
people with PCA that we asked about had
frequent problems with their mood and less
awareness of their own abilities. However,
when we asked about everyday skills, things
like making a hot drink and shopping, the
proportion of people who had a reduced ability
was very high. Often, a little bit of assistance is
needed with many kinds of activities. When we
compare the results from people with Posterior
Cortical Atrophy with those from people who
have what we call typical Alzheimer’s disease
– where memory is affected first - we find
that a greater number of people with typical
Alzheimer’s disease have problems with
memory, awareness and mood – but a slightly
lower proportion have severe problems with
everyday skills. The original questionnaire didn’t
have any questions about vision, so we added
some extra questions about visual perception,
Ross Paterson
As a PhD student focusing on Young Onset
Alzheimer’s disease I discussed a study I am
involved in setting up. Later this year we will
be recruiting individuals to a new study into
early onset Alzheimer’s disease (individuals with
symptoms before the age of 65 years without
a known genetic cause). We already know
that Alzheimer’s disease can cause different
problems in individuals with symptom onset
at an early age compared with those whose
symptoms begin later on in life: in particular
we know that some patients with young onset
Alzheimer’s disease have much more prominent
problems with vision rather than day-to-day
memory. We suspect that there are other such
variants and this study will allow us to explore
the clinical and neuropsychological features,
brain imaging signatures and cerebrospinal
ability to use numbers, and language. In these
categories, a much greater proportion of people
with PCA had severe deficits than in the other
kinds of questions we asked, and this suggests
is that it’s really important to assess visual
perception, as problems with this can make
every day activities incredibly difficult.
11
research update
fluid (CSF) profiles of Young-onset Alzheimer’s
disease. This study, funded by Alzheimer’s
Research UK through a very generous donation
from Iceland Foods, will be one of the largest
carried out to date and we hope will allow us
to gain unique insights into how young onset
Alzheimer’s disease affects individuals and
their families. More generally we hope that
this research will help us understand better the
biological processes that cause Alzheimer’s
disease. Drs Catherine Slattery and I are the
researchers who will be running this study,
supervised by Dr Jonathan Schott and Professor
Nick Fox. For more information about the study,
please contact us by email (c.slattery@ucl.ac.uk;
r.paterson@ucl.ac.uk) or by telephone (0203 448
3856).
12
diary extracts
Diary extracts
As mentioned in the introduction to this newsletter, Bill McGammon
and David Moon both contributed to the January meeting by
providing access to diary extracts, outlining significant moments in the
journey their wives have experienced as a result of PCA.
With their permission, and as a result of the feedback we received from people who
read them, we are reprinting them here, trusting that they will provide valuable insight
for all of us affected by this condition in any way.
David and his wife Pat have been members of the group since it was formed in 2007
- Pat lives at home with David in Norwich. Bill’s wife Mags died in July 2012, having
also been a longstanding member of the group.
Pat Moon – Diary extract Sept
13th- 24th 2012
together. How we met, our marriage, jobs, homes,
children, holidays, Pat’s books and so on.
Pat suffers from Posterior Cortical Atrophy (PCA),
a rare brain condition. The following is a diary
account which her husband David kept and
records the everyday changes that he noticed in
her over a 3-month period.
The recording has proved to be a lifeline and I
must have used it a hundred times. Whenever
Pat ‘loses it’, I play the tape and nine times out of
ten it brings her back. She even participates by
intervening and joining the discussion again as
we listen. The technique has brought her back to
‘reality’ time and again.
“About a year ago, when Pat was still very lucid,
we sat down with a little dictaphone and made
a 20 minute recording about our lives together. I
acted like an interviewer but basically we talked
about all we could remember about our lives
FROM SEPTEMBER 2012
Registered blind.
Spatially disorientated – has no memory
of any familiar spaces so cannot find her
way from room to room in her own home.
When in a room she is often unable to leave
because she does not remember the way out
(even in a space as small as a toilet)
Can no longer conduct normal functions
independently - e.g. dressing, washing etc
(but thinks she can). Unable to use cutlery
independently and cannot eat or drink
very effectively.
Pat cannot be left alone for more than
about 1 minute – gets very anxious. For
example, she might ask for a cup of tea but
starts to call for help soon after I leave the
room.
Much weaker than at start of year and
deteriorating fast. Cannot walk far, weak
hands (lifting a full cup very difficult), very
poor co-ordination. Can only just climb
I STRONGLY recommend this to all carers who care
for someone who is still sufficiently lucid. It will
prove invaluable to them in the coming months”.
the stairs at home (now limited to once a
day at bedtime).
Has had tendency to ‘lean’ very markedly,
particularly when tired; almost topples over
at times. Lean started to the right (for some
weeks) then changed to the left. Presently it
has become a ‘stoop’ – to the centre.
Low mood persists, mornings usually
worse. Often says she wants to die.
Has a daily ‘memory loss’. Usually around
5 or 6 o’clock. Demands to know ‘why am
I here?’ Denies that she is in her house
and does not know who her husband is. (If
I explain that I am her husband she can get
quite aggressive and says that her husband
has left her). When these episodes end,
she has no memory of them happening.
Most symptoms are unpredictable
and complex, they can switch on quite
suddenly. Occasional bouts of ‘insanity’
– attempts to run away but has no idea
where she is and might even attempt to
13
diary extracts cont’
walk through walls or objects.
Administration of Pat’s medications has
become a fine art. Her symptoms have to
be understood and monitored in order
to provide appropriately and at timely
(although irregular) intervals.
Can mislead (not deliberately) – might
insist that she came by helicopter for
example. Usually thinks she can do
anything as before – ‘I need a new pair
of glasses’. Could be dangerous if she
inadvertently fooled a stranger.
Calling “help me” is becoming more
common. Sometimes about the house to
inanimate objects (which she cannot see),
and sometime in the street. She has never
articulated what sort help she wants.
Very odd delusions or requests (asked to
have a bath during lunch, for example).
Seems to see odd things and stares towards
nowhere – saw a baby on the table.
Pat’s ‘out of it’ experiences are more
frequent and seem to trip in and out for
longer. She sometimes adopts a fixed stare
with dilated pupils; at those times she has
no idea who I am – and is afraid of me.
Pat’s ‘vision’ is definitely worsening. Her
brain’s interpretation of what her eyes can
see is very loose. She is also losing skills
in both gross and fine motor control. She
can no longer manipulate a small object
such as a pencil. She cannot eat without
assistance except for ‘finger food’ (such as
a grape). She tends to ‘shuffle’ a little so is
prone to trip (we watch her very closely);
if she stumbles she has little in the way of
reacting to save herself.
Pat’s motor skills and control are
getting much worse. She cannot use a
tissue effectively and sometimes has
problems with clearing phlegm. Toileting
has become a serious problem (not
incontinence but she seems to have
forgotten the process and always needs
help). Once in bed Pat stays completely
still and only moves when I take her to the
toilet (usually about 4 times now).
the pattern described for the September
‘diary’ – but the ‘out of it’ experiences are
becoming more frequent (sometimes
twice daily) and less predictable. She often
gets an attack at around one o’clock in
the afternoon – but, worst of all, they can
happen in the night. Once she called for
help and tried to get out of the room every
five minutes from 11.00pm to 02.30am; a
really bad night for both of us.
We have had a ‘wet room’ installed and
made a ground floor bedroom so we no
longer have to go upstairs. Pat has been
loaned a hospital bed by the O.T. – very
useful. Pat always uses a wheelchair when
we go out and has an indoor ‘shower chair’
(also from the O.T.) to move about at times.
Her walking has become very weak and
toileting is difficult. Another big change
is that Sam (our son) has given up his
full time work so that he can help us. He
comes for two or three hours nearly every
day – this is a massive help and pretty
indispensible. Other members of our family
come to stay whenever they can.
SUMMARY for NOVEMBER
More of the same although Pat is
becoming weaker and less responsive. She
can barely walk at all (just a shuffle and
perhaps 30yards max) so the wheelchair
is indispensible. Her mood is variable
but she sinks into despondency for long
periods. Still very unpredictable. Her
temperament can change at mercurial
speed; she can go from being quite docile
to becoming hostile and aggressive within
seconds. When she is hostile she does
not recognise me and will oppose every
suggestion or offer of help. She is on the
verge of physical aggression and will
sometime clutch at my clothing. However,
her muscle control is very uncoordinated
and she does no damage. Sometimes she
will scream. More serious are the times
when she stands up and starts to blunder
about – this is also uncoordinated so can
be controlled by ensuring that she is not
likely to damage herself (not always easy).
Her medication programme requires some
SUMMARY for OCTOBER
Pat’s condition is more or less repeating
14
diary extracts cont’
She is having even more serious ‘5.00
o’clock’ when she can be very difficult and
inconsolable. She will aggressively deny
that I am her husband and her delusions
can be wide ranging now. She can have
two quite serious events daily although on
some days they might be minor episodes
but more frequent. She might even wake
up in that state of mind and recently one
came on during her shower when she flatly
refused to move for about 30 minutes. I
am finding the best approach is to be
very gentle and reassuring at all times; it
is important not to argue as logic has no
meaning to her. I try to change the subject
or tell her that ‘David’ is away but will be
back soon. I try to prepare her for the
bad events (like dressing) by talking her
through well in advance and going very
slowly through the process.
Pat always has the full dose of Respiderone
(0.5mg in 4 doses). Lorazepam as required
(normally 3x 0.5 but sometimes 4x)
skilled evaluation of her ‘mood’ almost
on an hourly basis. Sometimes I am able
to get it just right but there seem to be no
rules except to watch for the signs. She
is taking the full dose of Respiderone (4 x
0.5mg) but not always using the maximum
of Lorazepam (usually 1.5 mg only). Pat
is suffering more delusions and certainly
can no longer be unattended for more
than 60 seconds before she starts to call
for help. It would be impossible to cope
without Sam and other members of the
family.
SUMMARY for DECEMBER
Steady deterioration in abilities. Pat is
virtually unable to do anything without
help and can only be left unattended for a
few seconds before she calls for help. Often
calls for ‘David’ even when I am by her
side. She will try to stand as soon as she
realises she is alone – and then staggers
about dangerously.
Margaret McCammon’s Diary
Mags had retired in June 2008 after working
as a Legal Secretary for the past 30 years.
She was diagnosed with PCA in November
of the same year by Dr Peter Nestor at
Addenbrooke’s Hospital, Cambridge
(happy retirement, eh!). During testing,
she touched type her name and address
for him, no problem, and when read back
had missed out 1 digit of postcode. It took
her longer to correct that than typing the
original. This was when we realised there
was something amiss. She attended various
research programmes early in 2009, and
continued with annual visits to Dr Nestor’s
clinic in June of each year. On her last visit
in 2011, it was obvious that degeneration
was starting to kick in and it was suggested
that she should withdraw from Aricept as it
did not seem to improve her situation. She
wasn’t well enough to commute for follow
up appointment in June 2012.
She had managed quite well until I retired
in June 2009, when it was now becoming
quite obvious that she was struggling to
cope on her own. She could open the
freezer door but couldn’t think to turn her
hand around to open fridge door. Found
it impossible to work out 24hr clock on
cooker and even began to have difficulty
with the 12hr clock, she could see the hands
but could not work out the time. Cooking
was now out of the question as she would
forget to turn off hob and it became too
dangerous.
Mags had to give up driving and as a
passenger trying to enter car with left foot
forward, proved impossible. She began to
15
diary extracts cont’
have difficulty locating the armchair, quite
often sitting on arm first and sliding into
position. Eventually she had to be guided
into chair, as if left to her own devices
would miss chair completely and land on
floor, all due to lack of spatial awareness.
This obviously applied to visits to the toilet.
I purchased a lightweight transportable
wheelchair as walking when shopping
became very tiresome.
When you are desperate you will try
anything, acupuncture (10 sessions),
brain gym (rhythmic movement training,
wellness kinesiology), all to no avail.
Margaret had attended two/three meetings
of the PCA Support Group.
time progressed we became aware that
a wheelchair commode only fits over a
conventional 15” high toilet. Never told this
by installer at time.
January 2012
Began the year having weekly visits from
physiotherapist to help keep muscles
supple, arranged by GP.
March 2012
Attended East Anglia Driveability for
assessment of swivel chair to aid entering/
exiting car. It was something we were
seriously considering. It is a worthwhile
option for long term use.
Visit from Speech Therapist, as Mags was
beginning to mumble her words at times.
After several visits, the therapist concluded
that there was not much she could do. She
thought it a degenerating muscle problem
that was the cause, which also affected her
ability to eat. Information of findings given
to GP.
Visit from Sensory Support team, nothing
they could do either.
Visit from Social Care Assessor, who
reported her findings to our GP.
Visit from Occupational Therapist for
assessment.
Visit from Assistive Technology for
assessment.
Sufferers from Dementia normally have
a plateau period. Mags was beginning to
degenerate without plateauing at all. This
was making it difficult to meet her needs as
her condition was constantly changing.
April 2012
Visit from Social Worker for assessment, as
it was now becoming clear that help with
care would be needed.
As recommended by O/T, stairlift and
bedroom ceiling hoist were installed. It
was deemed inappropriate for me to lift
Mags from bed to shower commode, due
to risk of injuring my back and then who
would look after her (at GPs insistence). It
was becoming increasingly difficult for her
to walk unaided. Mags was not happy on
stair lift, very frightened (? due to spatial).
There does not seem to be any equipment
2010
Was not a bad year as Mags seemed to have
plateaued for most of it and we managed to
have a bit of a social life.
When on holiday in Lancs at Mags’ sister,
she took a fainting turn in car. We took her
to Burnley A&E; they had never heard of
PCA and she was discharged.
She took another turn at midnight. The
paramedics were called, she was admitted
to Blackburn Royal Infirmary and kept in
for observation. Again, the hospital had
never heard of PCA. Mags had another
three episodes under their care. She was
kept in for three days and prescribed
Epilim, to control epilepsy, which she had
never suffered from previously. After 48 hrs
clear from any episodes, we drove home.
On her annual visit to Addenbrooke’s, they
suggested it would be safer to keep her on
Epilim, rather than take a chance of another
episode.
November 2011
We converted our bathroom, extended
shower cubicle area and removed shower
tray to install a level access shower with wet
room non-slip flooring and appropriate
grab handles. Also anti-scalding
thermostatic shower, as Mags could not be
trusted to adjust controls by herself. This
proved a good move.
Beware: Made mistake of installing 18”
higher toilet to make it easier for her. As
16
diary extracts cont’
available that can transfer a patient from
wheelchair to stairlift and vice versa, only
option is to be manually lifted.
Assistive Technology brought alarm
button on lanyard, large number telephone
with three picture memo buttons and a
movement sensor; didn’t find any of them
much good at this stage. Also bought baby
alarm monitor for downstairs with infrared camera placed in bedroom. Brilliant
piece of equipment, enabling me to monitor
her from downstairs. Visual and sound.
Highly recommended.
capable of doing it herself, wanted to take
her home. My daughter Loraine , Mags’
sister Ann and I were sharing care from
9am to 10pm to ensure Mags had adequate
food and drink. Loraine had to change her
mum’s wet nappy as nurses were too busy
at the time, simply not enough of them.
We filled in booklet with regard to her
drug dosage and frequency, this was totally
ignored. On asking trolley nurse why she
was giving Mags her ‘knock-out’ drugs at
tea time and not supper time, she said I just
give them out, I don’t know what they are
for. Honestly, I didn’t swear. I complained
to sister, who persuaded me to leave Mags
there until Friday, as she was trying to
initiate Continuous Health Care (CHC),
which she can only do while patient under
her care.
Friday 8th: Mags came home, hospital
issued medication in liquid form, as they
found she now had difficulty swallowing
tablets.
Monday 11th: Hospital bed arrived. APS
and Hospice@Home teams took over care
for two weeks; very professional.
Monday 18th: Mags was now under care
of GP, Community Matron and Macmillan
Nurse. Macmillan Nurse arrived for
assessment. CHC assessor arrived, but did
not think Mags met criteria. I was livid.
How can she be under H@H team and not
meet criteria?
Tuesday 19th: After pressure from other
three, CHC assessor admitted she called it
wrong.
Wednesday 20th: Mags 64th birthday.
Family all here. I was not sure if she
was aware it was her birthday. Friend
telephoned to wish her happy birthday, last
phone call Mags made.
Friday 22nd: Visit from GP who is going on
holiday for 3 weeks, doubted if Mag would
be with us on his return; very sympathetic.
He prescribed minimal dose morphine
patches (12.5 um) to make her more
comfortable.
Monday 25th: Care was handed over to
Saga Care. They were excellent, all of small
team looking after her very well. She even
May 2012
Further visit from OT, who had supplied a
separate commode for downstairs toilet.
Social Worker organised ‘one day respite
care’ per week at nursing home. Mags
was not happy there; lasted two visits. She
was the only one in day centre; not much
stimulation there.
We then considered installing low profile
front door with ramp for wheelchair access.
Social Worker organised care twice a day
for personal needs through Allied Care.
First week, two carers x two visits per day
equals 28 carers, we had 22 different faces.
Not good for someone with dementia.
Weeks 2 and 3 seem better with less
personnel.
June 2012
Were about to give go ahead to builder
for ramp, but as degeneration began to
move quite quickly, put on hold, eventually
cancelled.
Jubilee Monday: Visitors from Australia to
see Mags.
Jubilee Tuesday: Mags suffered from
abdominal pains. Called out of hours
service; not very helpful. Daughter called
ambulance. Paramedics called out of hours
doctor; did not have much success either.
They decided to take her into hospital.
Wednesday, Thursday: In hospital, no one
had of heard of PCA, they had to ‘Google’
it. Hospital care was appalling, leaving jugs
of water by her bedside, no one to decant
into beaker to give her a drink, she was not
17
diary extracts cont’
feeding Mags and withhold all drink. We
were to wet her mouth with a sponge type
lollipop (supplied), occasionally dipped in
pineapple juice which is full of enzymes to
help stop any bacteria.
Was this the beginning of the Liverpool
Pathway? Nobody had said.
Wed 11th: Stand in GP arrived to check on
Mags. Patients at EOL stage should been
seen at least once a fortnight by GP, as if not
seen within final two weeks, there may be a
need for post mortem.
Are carers aware of this? I wasn’t. Last thing
you would need.
Friday 13th: Mags breathing quite
heavily; checked her rate over 3 hours and
maintained 36 breathes per minute. We
were told it could go as low a 5 or 6.
Saturday 14th: Shock, Mags passed away at
6 am this morning.
Friday 20th: Mags’ funeral (birthday 20th
June, funeral 20th July).
joked and laughed with them.
Thursday 28th: Visit from palliative
consultant, as Mags ability even to swallow
liquids was deteriorating; she prescribed
medication administered through a syringe
driver.
Mag began to scream when being bed
bathed, nurses thought this was due to
muscle contraction.
Doctor later told us this was because she
was in a black space (disorientated) and
when rolled over on side, thought she was
falling. I wish we had known this at the
time.
Friday 29th: Community Matron visited to
see all care was in place.
July 2012
Wednesday 4th: Nursing Sister attended to
fit syringe driver. She visits daily.
Monday 9th: Nursing Sister attended to
service syringe driver. Advised us to stop
Summary
We as a family, (son Alan, daughter Loraine and
myself) realised that there was no way back for
Mags. Although it was very sad for us, I know it
was not sad for her. She was well aware of what
lay ahead, and wanted no part of it. It was a sense
of relief. Unfortunately, you can’t rectify the brain.
Mags wasn’t daft and knew what was coming;
there is no way that she would have wanted to
live a life where she was going. Her main worry
was who was going to iron my shirts, typical of
her. She was an avid reader, but when she turned
to page 2 and could not remember what was on
page 1, that was sad. Being a Morse fanatic, never
missed an episode, you can see how hopeless it
was becoming for her when she could not follow
the plot, or as she said “I have lost the plot”. In the
end she never complained or got hysterical, and
that was how she left us, peacefully drifting away
in her sleep. Donations tell you how well she was
regarded (with full house of 120+ at her funeral),
totalling almost £1200: £500 to PCA Support
Group, £500 to Alzheimer’s Society, £100 to church
for someone in need at Christmas and remainder
on Christmas Vouchers for THE carers who looked
after her so well at the end. That’s what she would
have wanted.
Loraine, a teacher, had the chance of redundancy
in summer of 2011 when Suffolk CC closed down
middle schools, but opted for another position
in a Secondary School. She bitterly regrets that
decision, if she had known her mum had so little
time left she would definitely have wanted to
spend the last year with her. Loraine would sit at
night holding her mum’s hand and talking to her
for 3 hours at a time, not just her mum, her best
friend, they did everything together. My son, Alan,
couldn’t do this, seeing his mum for 5 mins at a
time was about all he could handle. He now feels
so guilty. He mustn’t, everyone is different. Both of
them were very close to their mum, he particularly
found it so hard to handle.
In conclusion, don’t take any aggression or nasty
remarks from your partner too seriously; let it
go over your head. They are not saying it, it is
this dreaded disease. I am afraid when you are
diagnosed with PCA you become a member of
“God’s waiting room”. Cherish what time you have
together, life is short enough for us all.
Good luck and wishing you all the time in the world
together.
Bill McCammon
18
and finally ...
Alzheimers Show,
London, April 2013
We were delighted to be able to represent the
PCA Support Group at the recent Alzheimer’s
Show in London. With over 2000 people passing
through the doors, we had plenty of opportunity
to talk to people and promote awareness of the
groups we operate under the umbrella of the
Myrtle Ellis Fund. Seb had been invited to speak
about ‘Young Onset Dementia’ at one of the
main show events.
Checklist
RADAR keys: national key scheme for toilets for
disabled people. E-mail: radar@radar.org.uk Tel:
020 7250 3222
This checklist will remain a feature
in forthcoming newsletters and can
be added to as appropriate. It is a
brief reminder and pointer to those
services which may be of benefit
for people with PCA. Please contact
Jill if you require further information
about any of these services.
Blue badge parking permit: see our website for
our factsheet and supporting statement
RNIB: support and advice for people with sight
loss. Tel 030 3123 9999 E-mail: helpline@rnib.
org.uk
Medic Alert or other identification networks
Disabled Living Sites, which sell products
designed to make daily living activities easier to
manage. Of particular note is The Knork is a fork
with wide, rounded and bevelled outer tines that
will safely cut food like a knife, without a sharp
edge to cut the mouth of the user. Visit www.
livingmadeeasy.org.uk and www,asksara.org.uk
Assessment of need: for patient and carer.
Request one via your GP or directly via your
local social service department: [Disability Living
Allowance/Attendance Allowance/Council Tax
Reduction]
Advance Care Planning: the process of
identifying the wishes and preferences of the
person diagnosed, ensuring that people are
aware of these
Lasting Power of Attorney: needs to be
established as soon as possible
Admiral Nurse Service: information and support
for family carers, people with dementia and
professionals. Available locally in some areas
for practical support but the helpline is open
Message in a Bottle: a Lions scheme which
combines a notification at your front door with
the storage of vital information in a bottle in the
fridge! Visit www.lions105d.org.uk/projects/
miab.html for information
to all. Tel: 0845 257 9406 or email direct@
dementiauk.org
19
minutes
PCA CARERS MEETING MINUTES: 22 JANUARY 2013;
Gilliatt Lecture Theatre, Institute of Neurology, Queen
Square, 1pm to 3.30pm
Venue and attendees: 40 people attended in
person, with 3 others (all from the UK) joining us
has PCA.
2.2 Disability Living. The lowest amount is
via Skype. This is a very encouraging number,
£20.55, the middle award is £51.85 and
so our meeting continued in the Gilliatt Lecture
the highest award is £77.45. In addition,
Theatre. We all felt we had gone back in time
Mobility Allowance continues after the age
to our student days! The acoustics etc. are, of
of 65: so make sure you apply for it before
course good - purpose built, though the steep
65, since you cannot apply if you are over
steps would make it difficult if a number of elderly
65.
carers were to attend.
2.3 Points to remember when filling out claim
Programme: Our theme was “End of life care”
forms: - Don’t under-estimate how you are
we heard 3 personal accounts from Roger
coping: describe the worst day. It is all too
Kelly and Peter Ledger from our membership
easy to make the best of things and not to
along with Barbara Pointon MBE, an Alzheimer
notice deterioration. Remember Night Care
Champion, who is a government advisor on
is triggered, if you are woken up more than
behalf of the Alzheimer Association.
twice per night. Ask yourself, if you would
leave the person you are claiming for alone
Welcome from Jill:
1.1
all night?
Jill outlined the programme and added
2.4 In claiming for Mobility, you need to stress
a brief history of Carers Meetings for the
that the person cannot go out alone:
benefit of newcomers.
stress that they need help with steps and
1.2 A number of case histories written by
think how far they can walk before they
members were available at the meeting.
become tired. Remember that severe sight
Further copies may be obtained from Jill, as
impairment automatically triggers the
needed.
highest rate for Mobility.
1.3 Data protection issues. Minutes will be
2.5 Blue Badge. Severe sight impairment
taken and posted on the web site. Issues
triggers an automatic Blue Badge. Drivers
are recorded but no names are used,
ferrying people with a Blue Badge do not
except for those of the speakers. Speakers’
pay congestion tax. The badge holder can
Power Point Presentations will be posted on
register up to 2 vehicles of people who drive
the website.
them.
2.6 HM Revenue and Customs. A Blind Person’s
2Talk by Roger Kelly “Non means-tested
allowance is £2,100. They are entitled to a
benefits”.
The main sources of such benefits are:
half price TV.
2.7 NHS Continuing Health Care. Applying is
Local Government, The Department of
a long and complicated procedure with a
Work and Pensions, HM Revenue and
points system under various headings; it is
Customs, TV Licensing and the NHS. Social
processed in two stages over a period of
Services were not included in this talk.
months before a final decision is reached.
2.1 Local Government: Council Tax is
There are 10 criteria is stage 1 including
reduced by 25% on application. In effect,
Cognition, Behaviour, Medication and
carers are treated as being the only taxable
Mobility each of which is assessed at 3
resident. Council tax reduction is if there
levels. If you pass Stage 1, then Stage 2 is
are only two of you in the property and one
the Decision Support Tool (DST which has
20
minutes cont’
12 criteria and up to six levels of severity
legal position. It is vital to plan well in
However, benefits can be substantial. In
advance since the latter stages of PCA can
one case the patient was given 3½ hours of
progress suddenly. A scripted version of his
help in the home paid for by the NHS and
presentation is available to read at the end
their carer are allowed 2 respite nights.
of these minutes.
All Care in a Nursing home can be fully
Barbara Pointon’s talk, ‘Offering
funded by NHS. Disability Living Allowance
enlightened care and support to people
will lapse after 28 days. Some Local Areas
with dementia’.4.1 Barbara’s talk was based
will provide an independent Health Budget
on what she learnt in the final 6 years of
where the carer becomes the client and
her 10 years of living with her husband’s
can administer the budget for professional
Dementia. As a Dementia Champion, she
Carers as an employer and thus pay at
presented imaginative, pragmatic solutions
around two thirds of the rate of an agencies
to the problems of Dementia, championing
charge. Organisations such as the Sussex
not just the carer but also the sufferer, as an
Independent Living Association will help
individual.
you with their contracts and administer their
4.2 Spotting tell-tale signs. A new fact does
salaries and the tax involved. Currently, pilot
not go into the memory – in Dementia,
schemes are being monitored prior to being
the brain no longer lays down a memory.
rolled out nationally. If you stay at home
When patients ask the same question
may keep DLA if your PHB does not fully
5 times, each time is the first time.
fund 24/7 care.
Patients start to make mistakes in familiar
2.8 Final tips. It is vital to stress that the
activities. 84% of Alzheimer sufferers have
condition is unpredictable. Apply ASAP for
visio-spatial problems. They can see, but
help. In making applications, stress that this
can’t interpret: hence misunderstanding
is an ILLNESS. Do not be positive about how
their environment. They get lost in familiar
you are coping. Look forward to what will
places, have problems telling the time
happen: do not base your application on
or finding rooms. They are aware of
the past situation.
this and get frustrated by mistakes.
2.9 Getting Help: A social worker should
Their tracking of facts becomes faulty:
be assigned to each case; in addition
hence left and right get confused; art,
Community Psychiatric nurses will help
spelling and writing all become flawed.
as will care home management, charity
4.3 It is vital to celebrate what they can do.
workers and even your MP! Roger also
Music, for example is stored in a separate
offered advice to individual members based
part of the brain, and continues to be
on his experiences.
enjoyed. An early diagnosis is vital to
2.10 Problems of money not coming to the carer
preserve relationships.
and a bank refusing to give a breakdown
4.4 Help with personal Care. Don’t rush. Allow
of how it is being spent were raised from
the patient their own pace. NHS Carers are
the floor. Getting power of Attorney is highly
allowed a disgustingly short amount of time
desirable to prevent this happening.
with patients. Limit choices and don’t try to
normalize the situation: ask yourself who is
3 Talk by Peter Leger. Identifying a Care/
the problem for? Let it go and try instead to
Nursing Home and accessing State
benefits
think laterally.
4.5 Memories of the past can be abruptly lost,
3.1 Peter spoke of his experiences as difficult,
so respect the patient’s routine, they may
time consuming and frustrating at each
be reverting to childhood routines. Knowing
stage: identifying a home, finding funding
past history might explain their resistance to
and how to access it, understanding the
certain actions.
21
minutes cont’
4.6 Strip washes are often preferred by the
the Alzheimer Association. This booklet is
elderly, who feel the cold more. Always
filled out with a photo of the patient and
reassure the patient – resist the urge to take
basic personal details by the carer: it stays
over.
on the bedside locker in hospital giving
4.7 People with dementia can’t cope with more
personal information to staff when the
patient can’t do so.
than one thing at once, background music
helps concentration. Continuity of paid
4.13 Eating Weight loss is inevitable as the brain
is losing control of extraction. Opening one’s
carers leads to a familiar relationship.
4.8 Perceptual solutions. Leave the WC door
mouth is a very trusting thing to do: hourly
open: where there is an image, locate
pureed food or thickened cold drinks by
it near the handle. Floor needs to be a
the teaspoonful are preferable to PEG (tube
different colour from the WC.
feeding). Coloured beakers (baby ones) are
4.9 Hiding and hoarding are never stealing.
most easily perceived. Paraplegic routines
Patients forget where they have hidden
for excretion are preferable to resorting to
a lost item. Wait for people to form a
laxatives, which irritate the gut rather than
question: simplify the response.
helping failing muscles. Reduce medicines.
4.10 Actively involve family carers as expert
Child-size doses are effective and have
partners in all care settings. Patient may
fewer side effects. Normal pain scales
use childhood words for bodily functions
are unreliable in dementia where sensory
(eg. Number 2 = poo) Share these with the
things have increased importance. When
carer, so that they can meet the patient
cognition, abstract thinking and the control
halfway. Patient confidentiality may have
of physical functions are lost, the things we
to come second. The National Council for
learned first as babies are still intact, our
Palliative care and Carers UK can advise on
psyche, our senses and our emotions. Use
these issues and on difficult conversations.
the senses: smile at patients, comfort with
E.g. Booklet “What every Carer needs to
touch, introduce stronger flavours, make
know”.
use of favourite tunes. Support the psyche:
4.11 Perplexing Behaviours. Feelings and
Build positive emotions: Help the person to
feel cherished.
emotions give rise to behaviours: a
reflection in a mirror may appear as
4.14 Dying It is important to establish final
a stranger: TV can be real. Mistaking
wishes early, bearing in mind that there are
generations may simply be because the
huge advances in palliative care. Make use
patient is time travelling. See: “And still the
of touch and music: help the person to feel
Music plays” Graham Stokes (Hawker). See
safe. Engage hands, head and heart to the
also Leaflet 8 Caregiving Maxims. If people
end. Competency is not enough.
cannot enter our world, we must enter
theirs: protect their feelings, ensure good
physical care, personalize activities - people
with dementia don’t do anything gladly.
Beware of using anti-psychotic medicines.
4.12 The severe stage. If Alzheimer does take
its full course, mobility will be lost: a hoist
and a recliner (rather than a chair) will be
needed. Forever Living products eg. Aloe
Vera Jelly, help with skin problems. Admiral
Nurses 0845 257 9406 can advise, as
can direct@dementia.uk.org. See also the
booklet “This is me” published by RCN and
22
Celia Heath, January 2013.
minutes cont’
Notes from Peter Ledger’s presentation
Paper given to the PCA Support Group 22nd
Identifying a nursing home
January 2013
Although from time to time Margaret and I had
“Identifying a Care/Nursing home and
discussed her condition, she has never had an
accessing State Benefits – a personal
insight into it and so I have had to make all the
experience”
decisions.
My name is Peter Ledger, I live in Ipswich and I’m
Throughout the five years when Margaret was still
the husband of Margaret who was diagnosed
at home I did give a lot of thought to what I would
with PCA in 2006.
do if I was no longer able to care for her on my
For five years after the first diagnosis I cared for
own. However, I didn’t do this in an organized,
Margaret. During that time we were able to lead
objective way and I dreaded the prospect. The
a relatively full life. However, Margaret’s condition
issue would go in and out of my mind and I
deteriorated quite suddenly and in April 2011 I
would think about certain scenarios and then the
realized that I could no longer cope. I am not
thought would drift out again.
going pretend that this was anything other than
In other words, I was sliding into my first and
devastating at the time but I am reconciled to the
biggest mistake. I found it impossible to confront
reality that Margaret needs 24 hour nursing care.
the reality of what was happening. So when
The fact that I can say this is largely due my great
the dreadful moment came I hadn’t done any
good fortune in finding a nursing home where
planning – other than arranging Enduring Power
Margaret receives excellent care.
of Attorney which proved to be an absolute saver.
Jill’s brief was for me to talk about “about the
Fortunately, we have a wonderful GP. I had
experiences you have had in terms of finding,
reason to call on his skill and support as
settling and now caring for Margaret in a care
Margaret’s condition deteriorated but I had no
home setting.” So what I plan to do is just tell
idea that he was keeping an eye on me as well
you our story: how I went about finding a suitable
as treating Margaret. He began to encourage
home, what was involved in funding Margaret’s
me, and eventually to hassle me, to consider
care and in settling her in the home.
respite care for Margaret. As he put it: “Peter, we
Put like that the process sounds as though it was
don’t want two of you falling over.”
relatively straight forward.
That was a wake up call.
It wasn’t.
As a result I did something I had dreaded – I
I found the benefits system confusing and the
roused myself and visited a care home. It was
process of finding a home and accessing benefits
a good thing I did. That evening I hit the buffers
was difficult, time consuming and very frustrating.
and the decision whether or not I could continue
So my principal objective today is to try and
to cope - and what to do if I couldn’t - was forced
explain how I overcame what often appeared to
on me.
be obstacles put in my way.
The following day Margaret moved, as an
When Margaret had to move from our home into
emergency admission, to the one home I had
care I found myself confronted by four practical
visited. Looking back I realize now that I it was
issues (and here I am setting aside my own
a close call. I had looked at just one home and
emotional reaction):
I happened to sense it was OK. I hate to think
1. identifying a home that I was happy with;
what I would have done if I hadn’t made that one
2.What funding was available;
visit. In truth I had only myself to blame.
3.how to access these benefits and
The result was that I found myself having to work
4.The legal issues.
things out at a time when I was in emotional
turmoil. It’s not the best state of mind in which to
discover the extent of your ignorance.
23
minutes cont’
So my first point is – however hard, don’t put
of the Alzheimer’s Society and asked for her
off making enquiries and finding out. I do not
advice as to what I should expect. She was really
pretend it is easy. It isn’t. But however much pain
helpful. Her advice included:
is involved, try and crank yourself up and start to
• when assessing a home, make more than one
prepare because it’s worth it.
visit;
• take someone else along so that you could
The legal issues
It soon became clear that Margaret needed full
have a second opinion;
• She pointed out that it’s a good start if a home
time nursing care. So what started as “respite
is happy for you to turn up “on spec” rather
care” rapidly transformed into a search for a
than insisting on an appointment. (In fairness,
suitable nursing home. Again, this only served to
all the homes I contacted expected me to just
emphasize the extent of my ignorance and lack
turn up).
of preparation.
• She also suggested that I should assess the
The most important thing I had failed to realize
residents as well as the home. How do they
was what is involved when dealing with the
appear? For example, clothes messed up by
welfare and best interests of someone who no
eating do not necessarily indicate neglect. It
longer has capacity.
could be that the home is trying to ensure the
Fortunately, Parliament has given this a lot of
resident maintains his/her independence.
thought and the person suffering is heavily
Alarm bells should ring, however, if the person
protected, but you need to know who is involved
is in the same state a day later.
and why. The bottom line is - you can’t just move
I’m fortunate in having a very supportive family
someone in your care into a home:
and group of friends. I talked about my concerns
• Social Services need to be satisfied that they
with them and this led to two lucky breaks. A
do not have the capacity to take decisions
friend mentioned that he knew a social worker
themselves;
who was “in and out of homes” and said he
• The NHS Trust needs to be satisfied that the
patient is eligible for the benefits available.
• and in Margaret’s case, because mental
would ask her opinion. Simultaneously, a school
friend of one our sons phoned and offered his
help. He is a GP in Suffolk and offered to speak
health issues were involved, the Community
to a friend in Ipswich. Unbeknown to me the
Mental Health Team had to make a medical
friend was an Ipswich GP.
assessment so that the correct treatment and
A week later I got the same advice from two third
level of care could be identified.
parties, neither of whom I had met. The words
I didn’t know any of this nor did I know how to
were almost identical: “tell your friend he could
access these agencies.
do no worse than look at Orwell Nursing Home”.
Armed with the advice of two professionals I
Finding a home
visited the home twice, the second time with my
Our GP kicked things off and put me in touch
sister in law. We had already revisited together
with Social Services. At the same time I asked his
some of the other homes I had seen. She agreed
advice on appropriate homes.
with and reinforced my view that they didn’t fit the
Unwittingly, I had stumbled on a path which was
bill. Happily, however, she felt that Orwell Nursing
to serve me well – I had started to network.
Home would suit Margaret best, and so it proved.
However, lack of preparation again caught me
So getting a second opinion proved invaluable. I
out. The two best homes were full. I visited three
was reassured by the view of someone else that
more but, although I had no idea what I was
my own impression was right.
looking for, I sensed that they weren’t right.
Role of the Community Mental Health Team
I had, however, got to know the local manager
However, before I could move Margaret from the
24
minutes cont’
first care home I had to secure the agreement of
accessing them.
Social Services. Simultaneously, I had to arrange
for her to be assessed by the Community Mental
Funding
Health Team. Again, our GP was key, putting
Up to this point Margaret’s care was self-funded.
me in touch with the Community Nurse and she
She received Disability Living Allowance and a
arranged for the CMHT to contact me.
small state pension, both of which made a helpful
It was at this point that I stumbled into the mesh
contribution to the costs but they were still eye
of bureaucracy. Margaret was suffering from
watering – around £38,000 a year.
bouts of acute anxiety but was no longer in the
As soon as Margaret arrived at the Nursing Home
care of our local GP surgery. The home was
they applied on her behalf for Funded Nursing
finding it difficult to cope with her and quickly
Care. That’s the normal procedure.
identified that she needed full time nursing
But it took seven months and a lot of hassle
care. However, it was over a month before
before Margaret was awarded Funded Nursing
Margaret was finally seen by a nurse, and then
Care. Getting it was a marathon which included:
a consultant, from the Community Mental Health
• Endless phone calls,
Team.
• Dealing with 14 different people,
What I discovered was that the CMHT only had
• Attending an assessment,
an assessment meeting once a week. Patients
• And what seemed like endless delays.
were added to the bottom of the list and were
only reviewed when they got to the top. I must
So how did I cut through this?
say I was staggered by this – and still am. So I
1. By sticking to my rule that whatever happened,
adopted a tactic of phoning the Team at intervals
I would keep cool and try to win the sympathy
of every four working days, i.e. enough to ensure
of the person I was talking to. I always knew I
they didn’t forget about Margaret but not so
had made progress when someone said: “I tell
frequently that I would annoy them and risk
you what I’m going to do Mr Ledger…”
losing their goodwill. And despite my anger
2.Networking like fury. As an example, one of
and frustration, I made a determined effort to
our neighbours works for Social Services and I
stay cool and try to engage the sympathy of the
asked her advice. What I didn’t know was that
person who controlled the list. It may sound
her daughter is also a social worker and she
obvious but it paid dividends as I began to be told
really knew the ropes. She was fantastic:
what was happening.
-
Margaret also had to be assessed by a
consultant in the Team and this led to more
She gave me the name and address of
the manager responsible at the PCT,
-
She also gave me a copy of the
frustration and delay - he was in a different
assessment form. This enabled me to roughly
location with separate booking arrangements -
work out Margaret’s score so that when I was
but, once again, I stuck to my plan of persistence
told Margaret hadn’t met the qualification
combined with staying cool.
score I was able to challenge this.
However when Margaret got to the top of the
- And most importantly, she told me about
list, the CMHT swept into action. She was
the second component of NHS Continuing
assessed by two specialist nurses and then
Healthcare. This was my most important
monitored every few days, including one visit
discovery. The second component picks
over a weekend, and she was also seen by the
up 100% of the nursing home costs. She
consultant.
mentioned in passing that “no one knows
To summarize: I was staggered by the range
about this, we are having to spend money to
and depth of support services available to me
publicize it”. Now there’s an admission. Until
but frustrated by the difficulties in finding and
then I had been worried stiff about how I would
25
minutes cont’
fund Margaret’s care.
As soon as Margaret was awarded Funded
finding.
- Attending two assessments (Social Services
Nursing Care I applied for the second component
and NHS) and a third joint meeting between
of Continuing Healthcare. As I have said,
the two agencies.
there’s a lot of ignorance surrounding this. The
However, when it was made, the award was
support for residents of nursing homes (ie people
backdated to the date of the first assessment (not
deemed to need nursing care) is covered by NHS
the date I applied). Again, the process was very
Continuing Healthcare. However, there are two
frustrating but polite persistence paid off.
components:
My biggest ‘win’ was when I gained the sympathy
1. Funded Nursing Care - this applies to people
of a nurse assessor. She was assigned to assess
whose primary need for care must relate
Margaret but was then promoted and had to
to their health. It covers the costs of care
pass the papers to yet another nurse assessor.
provided either at home or in a nursing home.
When I politely described the frustrations I had
It pays for healthcare, such as services from
encountered (actually I was beside myself) I heard
a community nurse or specialist therapist,
that wonderful sentence: “I tell you what I’m going
and personal care, such as help with bathing,
to do Mr Ledger…” and she decided to take back
dressing and laundry. Anyone who is deemed
the file. She turned out to be the best person I
to require care in in a nursing home receives
encountered and was tremendously helpful.
this. There is no means test. The current rate
So some general points arising from our
is around £107 per week
experience:
2.for those people who are deemed to require
• Margaret is treated separately from me, so my
full time care in a nursing home, as well as
healthcare and personal care, the NHS will
assets are NOT taken into account;
• Continuing Healthcare (the second component)
pay for care home fees, including board and
pays the costs of the nursing home and is not
accommodation. This is known as “the second
subject to means testing;
component” and is around £700 per week.
• Don’t forget DLA. I advised the Dept of Work
& Pensions when Margaret was awarded
Here is a link to a good document on one of the
Continuing Healthcare and then Funded
NHS websites:
Nursing Care. DLA wasn’t withdrawn until after
http://www.nhs.uk/chq/Pages/2392.
aspx?CategoryID=68
But although I applied as soon as Margaret was
awarded NHS-Funded Nursing Care it took a
further eight months for the second component
of Continuing Healthcare to be awarded. This
involved:
- Dealing with yet another group of people;
- Being told at one point that Margaret didn’t
qualify, only to discover that a mistake had
been made which added another month to
the delay. And the mistake was staggering
– the nurse assessor had simply added up
the scores incorrectly. If I hadn’t seen the
assessment form beforehand and roughly
worked out Margaret’s likely score I would
she had been awarded Funded Nursing Care
and it only stopped a month after the award
kicked in.
Settling Margaret in the Care Home
Perhaps this is more about settling myself
and being happy that I have done my best for
Margaret. Emotionally it was a very difficult for
both of us. Paradoxically, however, Margaret’s
condition helped her as she became less aware
of her surroundings.
That left me. Gradually I got used to the idea and
what helped was:
1. Visiting every day;
2.Timing my visits for mealtimes. This gives me
something to do and helps the staff;
3.Recognizing that Margaret and I are now part
of a new community which is made up of other
not have been in a position to challenge the
residents and their families. Getting to know
26
minutes cont’
them, “sharing the problem”, has helped;
are trying their best. They are under-resourced
4.Getting to know the staff, making sure that I
and it’s not their fault that the system works so
know their names, showing interest in them.
badly. Allow them the benefit of doubt – it will
In short, becoming friends with them;
help win friends (and my goodness, you need
5.Making a contribution where I can, for
example I wrote to the Council and got them to
friends!)
• Apply for benefits in good time; the process
regularly inspect the road to the Nursing Home
and persuaded them to make it a priority in
involves running a marathon;
• Network like fury – use every contact you
bad weather.
have (GP, Alzheimer’s Society, family, friends,
acquaintances) and follow every lead – the
Summary
best information I received came from the most
To summarize:
• Make plans in advance. It is natural to put
unexpected sources;
• ABOVE ALL be persistent and stay cool.
things off, but try not to. Making plans,
however painful the process, will pay big
I hope that this has been helpful and that I
dividends;
haven’t told you what you know already.
• Recognize that the people you are dealing with
27
minutes cont’
PCA SUPPORT GROUP, SPECIFIC CARE NEEDS. 22 MARCH
2013; Wilkins Old Refectory, University College London.
PCA Research Updates with opportunities for Questions
and Small Group Sessions to discuss the specific needs
and requirements of people facing a diagnosis of PCA
Venue: We are again very grateful to UCL for the
considerable variation in individuals, PCA
use of these facilities. It is an ideal venue, well
patients retain self-awareness and memory
placed for access by public transport.
skills much more than people with typical
Attendees and Welcome: Jill welcomed 62
Alzheimer’s.
attendees including 5 attending via Skype
Questions
from Ohio, Melbourne, Chester, Cambridge,
2.1 Does the diagnosis itself make a difference
Northampton and Exeter. It was lovely to meet
to behaviour? At present this has not been
new members: we hope you enjoyed the meeting
researched. The questionnaire was used
and felt at ease with us: we look forward to you
5-6 years after diagnosis; there are plans
joining us again and becoming old members!
to repeat it at different intervals during the
Seb sent his apologies; he is attending a meeting
course of the illness.
in Sweden. Members of the National PCA team
2.2 Does age affect the results? At present,
wore green badges for easy identification during
groups are mixed but we have plans to
the 2 discussion sessions and hence could also
separate age groups.
be approached during the informal sessions
2.3 How do drugs affect the results? This
before the meeting and during lunch. We
hasn’t been looked at yet, but part of the
thanked Grace Bulmer in her absence for her half
questionnaire asks about what medications
marathon fundraising efforts on behalf of the PCA
patients are taking, so they should be able
support group. Please visit http://www.justgiving.
to look at whether there are any differences
com/graceandtom
between people on different medication or
no medication.
Programme: Tim Shakespeare on the
2.4 Can you collect information from more
Cambridge Behavioural Inventory
people, including working with other
1.1 Tim gave a presentation on the Cambridge
research groups? At the moment, different
Behavioural Inventory, which is a
research groups in different parts of the
questionnaire given to a friend or relative,
world tend to use different tests, but
designed to map the progress of the
through the International Working Party on
deterioration of skills in PCA sufferers
PCA, the team hope to communicate the
compared with more typical, memory-led
results of their studies, so other groups can
Alzheimer sufferers. So far around 30 carers
use the same tests, if they’re found to be
have filled out the questionnaire and there
useful.
are plans to roll it out more widely.
2.5 Question via Skype: are coloured lenses
1.2 The skills involved were, orientation, self-
helpful? There is some evidence that
care, memory, awareness), disinhibition
yellow or blue lenses can be effective
(loss of the ability to stop yourself doing
for people with dyslexia, but there has
things you should not do). Vision, numbers
been very little research about this in
and language skills were added later,
PCA. It is something that Seb has plans to
because these represent the strongest
investigate. Please see the comment in the
differences between PCA and typical
‘My Contributions’ section of this newsletter.
Alzheimer’s disease. Although there is
2.6 Are there any useful I-phone apps?
28
minutes cont’
Some people have suggested using
such. there is worth in collecting as many
voice recognition, for example ‘Siri’. Voice
types of sample as possible from people,
recognition one is not yet fully developed,
in case future tests mean that we are able
and may still be difficult to use, hence not
to retrospectively examine samples for
completely useful for people with PCA. Jill
biomarkers. Hence the request for people to
suggests visiting www.dlf.org.uk/sara and
provide urine samples at some clinic visits!
parkinsons.org.uk for information on the
3.8 Does sense of smell play a role? Loss of
new ‘EasyCall’ app.
the sense of smell is an early symptom of
Parkinson’s disease.
Ross Patterson: Update on Aspects of Medical
3.9 How long are biological samples kept?
Research into Neurology.
The issue of consent needs to be clarified:
3.1 Speaking as a “medical” doctor, Ross
the Royal College of Pathology has issued
identified 5 important new strands in in
new guidelines for consent being kept with
research: International Collaboration, The
samples. Samples kept at -70° can be
Study of Genetic Factors, The Study of
used, but proteins degrade if repeatedly
Imaging, Multimodal Investigations, and
thawed. Samples taken after 2008 are of
The Importance of Cerebrospinal Fluid.
higher quality, as improved containers have
3.2 International Developments: July 2012
saw the first international meeting of 38
been used.
3.10 Can the causes of PCA be confirmed after
clinicians from 239 institutions worldwide
death? PCA is a clinical syndrome which
with a view standardizing terminology and
applies in life. However, a post mortem
to pooling and sharing resources.
examination can confirm protein contents,
3.3 Genetic factors: There are currently very
the presence of plaques etc. Such samples
disparate associations involving genomes
and genetic factors. The availability of
are hugely valuable.
3.11 Questions from Skype re new drugs and
worldwide blood samples represents a vital
how far they can help (NB Not all of these
step forward in such research.
are licensed in the UK) Jill gets lots of
3.4 Research into Early Onset PCA i.e. in the
questions re the value of taking vitamin
40’s 50’s and 60’s has been started with a
supplements but cannot recommend them
sample of 50 participants and 25 controls
per se. Basically if they are helping, are not
using MRI scans, neuro-psychological and
doing harm and are not overpriced, some
epidemiological testing.
patients choose to continue with them. Very
3.5 Research into Cerebrospinal fluid: This
few have been through stringent clinical
fluid surrounds the brain and spinal cord
studies, which makes proving their efficacy
and hence is in direct contact with the
very difficult. Anecdotal evidence then tends
brain itself. It is hoped that this research
to preside. SouvenaidDanone is a nutrient
will elucidate the biological mechanisms
cocktail which claims to improve memory
involved and aid diagnosis. It can be used
in people with Alzheimer’s disease: There
to measure the individual’s response to
are mixed views so far from users: some
drug treatment.
people have been helped. . Resveratrol,
3.6 Questions Can this fluid be used to rule
a natural compound found in red wine,
out other diseases? Yes, it can be used
grape skins, blueberries, pomegranates
to rule out cancer and certain types of
and several other plants, has been found
inflammation and is being used in other
to benefit health in a myriad of ways and is
areas.
another example of a compound which it
3.7 Can a bio marker be found for PCA? This
is difficult at the moment to comment upon
is the subject of research at present. As
scientifically.
29
minutes cont’
3.12 Food Supplements are not regulated by
NICE
reading the individual letters.
4.6 Comment via Skype: the use of a
3.13 Aricept and Memantine are licensed in the
background colour, particularly pink, can
help.
UK and are useful for Alzheimer’s: there is
no specific evidence on the separate effects
4.7 Is there a connection between childhood
dyslexia and PCA? This is not yet known.
for PCA.
3.14 Medics in the USA have suggested using
4.8 What is the effect on opticians’ tests?
a double dose. Is there any information on
PCA sufferers cannot read top letters, they
the efficacy of this? This is not known.
are better with smaller ones. Their restricted
3.15 At what stage does Aricept become no
vision means they can focus on individual
longer useful? The policy at the National is
letters: however there is a variation in the
to continue with it, for as long as it is seen to
consistency of perception – it can be erratic.
be helping. There is sometimes a case to be
made for trialing a period without Aricept.
Small group session to discuss patients’ needs
and service requirements following PCA
Keir Yong: Acquired dyslexia in PCA.
diagnosis.
4.1 Reading problems and difficulties in the
5.1 This was introduced by Robert Holman,
perception of letters are amongst the early
Care Commissioner from LB Camden,
symptoms of PCA. Keir’s current research
based on a project to assess the needs of
is concerned with the reading of whole
younger people with dementia The Camden
passages.
initiative has established the following
4.2 PCA sufferers can have poor peripheral
vision, are often visually disorientated,
perceived needs.
1 Sufferers need personalized and
and may experience visual crowding (an
consistent care: a series of new people
excessive integration of visual information)
coming in to provide care is disturbing.
which may contribute to problems losing
2 The raising of awareness in all
their place when reading a page or
concerned. People’s concept of
focusing on the relevant part of text.
dementia is based on symptoms
4.3 Developing reading aids for PCA: there
have been 11 participants so far. Accuracy
observed in 80 and 90 year olds.
3There is a big need to better understand
was increased from 56% to 95% when
early onset dementia and hence to
reading text displayed words at a time
listen specifically to patients’ needs, so
rather than all-at-once. Participants tended
that they can be collated for the Clinical
to find reading easier and more pleasant
Commission.
when using this method of reading.
4.4 The project seeks learn more about
be fed to other Commissioners across
London and ultimately nation-wide.
perceptual manipulations which might
facilitate reading in PCA and to begin
4Results from the questionnaires will
5The young onset group need more
development of a computer-based aid next
physical activities. Examples of good
year.
practice come from Cambridgeshire and
4.5 Questions. Why do PCA sufferers find
Hampshire, where monthly walks and
lunches have been very successful.
it impossible to read phone numbers?
Some PCA sufferers have great difficulty
and sharing resources.
with this because they need to look at
numbers individually, on top of often having
7Data protection issues are a major
concern in providing services.
specific problems in processing numerical
information. In reading words it is possible
6Boroughs should consider combining
8Comment via Skype: Employers need to
be informed.
perceiving the word as a whole rather than
30
minutes cont’
5.2 We broke in to small groups of between
activities in town and countryside, especially
6 and 8, with the aim of answering the
question: What are the specific care
for those with early onset dementia.
5.10 Feedback documents need to be available
and service needs of people with PCA?
in a general generic form from all support
Feedback will be collated from similar
groups. There should be a user friendly
exercises with people across the different
recognizable web site for all dementias.
dementia groups. There will of course be
detailed feedback via the newsletter in
due course. The minutes contain a brief
summary of the main points of today’s
ideas.
5.3 General conclusions from Group 1. Other
groups shared these - extra ideas are
minuted separately. Patients and carers
felt seriously alone with their diagnosis,
which can be brusque and contain little
introduction to the condition and scant
explanation. They feel marginalized. Delays
and poor liaison between agencies and
departments, particularly with the GP are
serious issues. There is a strong feeling
that departments sit on files for too long.
There is a need for everyone involved to
understand medical terms, to know what
lies ahead, and what the stages of the
illness are. Driving was singled out as an
area where advice and information is badly
needed.
5.4 Personalised advice is very important e.g. in
the area of handling money and personal
spending.
5.5 Length of time in arriving at a diagnosis is
a source of distress: there is a long route to
the specialist’s opinion.
5.6 The lack of coherence between the local
authority and the medical team is a
minefield. There is a perceived need for a
personal psychiatric nurse to explain what
is happening or should happen. Allied to
this is the need to have an overview of
exactly what is available centrally, in one’s
locality and in those nearby.
5.7 Hope is important: a bare diagnosis alone
can be cold.
5.8 A single person is valuable to guide
the sufferer throughout their illness.
5.9 There is a need for suitable leisure
31
Celia Heath