♪I won't lie I was terrified when the doctor said those words♪
♪My feet went from beneath me could not believe what I just heard♪
♪If I judged my condition from what I saw on television♪
♪I'd give up♪
S1 944 ,000 people are estimated to be currently living with dementia in the UK
[Music]
Dementia killed almost double the number of women than men in 2020
[Music]
Dementia has been the leading cause of death in women since 2011
[Music]
9% of people over 65 have dementia.
[Music]
Dementia will impact 50% of us
either through a personal diagnosis or by caring for someone who has it.
[Music]
1.6 million people will be living with dementia in the UK by 2040
[Music]
Dementia is the most feared health condition by 60% of people over 65.
[Music]
Dementia care costs in Northern Ireland are projected to increase 192%
from 800 million in 2019 to 2.4 billion in 2040.
Wayfinding in unfamiliar places can be more challenging
for people living with dementia.
Environment may affect people living with dementia more than most.
Noisy and chaotic spaces can feel disorientating and overwhelming,
may increase anxiety or frustration, causing changes in behaviour.
Everyday life for people living with dementia can be exhausting
though it may not be obvious to you.
It takes longer for people living with dementia to process information.
Our brains have to work harder to filter out external stimuli
often leaving us feeling depleted, exhausted and spent.
This makes our symptoms of dementia more evident.
[Music]
74,000 800 people are estimated to be living with young onset dementia
in the UK and Ireland
[Music]
Young onset dementia is when symptoms of dementia start before the age of 65
[Music]
Dementia NI members formed a working group in 2022
that included eight individuals living with dementia like me,
supported by four staff members working collaboratively together:
one from dementia NI
and three from the Southern and Southeast Health and Social Care Trusts.
The members of dementia NI are always looking for opportunities to engage
with hospital and social care staff to describe what it's like
to live with dementia and to share with them our challenges as well as ways
we can best be supported in both clinical and hospital environments.
However, speaking to every trust member in person is an impossible task.
So we decided to create a documentary to help us interact
with members of the Health and Social Care services to help bridge this gap.
Over the course of 22 months we met regularly to decide the content
of this film, sharing our own personal experiences across the spectrum,
both positive and challenging experiences.
We thought it would be beneficial to provide staff with 10 top tips
for supporting people like us living with dementia.
We believe these these practices can be easily implemented
without adding an extra burden to staff
and will lead to an improved staff-patient interaction
and in the long run will save time; Many people have commented:
"What is good for people living with dementia is good for everyone."
And we the members of dementia NI are sure you will find this to be so too.
We know you will find the following individual experiences engaging
even if somewhat emotional at times,
and that you will be able to put some of the practical tips into action
[Introducing members of Dementia NI -- the producers of this training resource --
and their experiences within health and social care settings]
S2 I'm Davie Michael McElhinney from County Fermanagh
I was diagnosed with frontal temporal dementia 7 years ago
I was aged 54.
S3 My name is Martin Murtagh
My dementia is Alzheimer's dementia
S4 So my name is Peter Alexander I was born in England, Twickenham,
so the good old rugby place.
S5 My name is Gerard Doran, I was diagnosed with dementia when I was 61.
S6 Yes, I'm Christopher Higgins
and my dementia was discovered just two years ago.
S7 Yes, my name's Allison, Allison Bachelor, I live in Dundonald
and was diagnosed with Alzheimer's in April 2017
S8 I'm a newly diagnosed person with dementia.
My past knowledge of dementia was that I was a social worker in hospital
S9 H,i my name is Tom, Tom Heatly, and
I have dementia, I've been diagnosed
with dementia with Lewy bodies
that was back about just over a year now.
Treat us with common courtesy.
S8 Treat us with respect, as valued, capable adults
Be aware of your facial expression, tone of voice
and your non-verbal communication
And when the students came, they said: "Oh I see here this person has dementia,
I don't know how to speak to dementia."
And I think that is the problem.
They think they're speaking to the dementia.
But I always said to them: "So what if they have dementia?
speak to the person first.
You will hear a little bit when they reply about de the way they are affected,
but just keep speaking to the person behind the dementia
because it's the person you want to talk to.
basically you talk about valuing an
individual in all those years that I
have
been a
trainer in the
trust basic
values are the
primary and important
factor what I would say
yes if I was to write a
book from a person who has
dementia it would be to
say I'm hurting inside
too I might not be able to express it
but I'm still the same person as I was
when I was
younger I am still that today
it's just that the person I am is
getting locked away more and more inside
me so don't treat me any differently I'm
still the same person as I
was even though you might have some
preconceived
ideas that because I got
dementia I'm an incontinent old person
but I'm not I was diagnosed at the age
of
49 and at that time I was told that I
shouldn't work anymore and that I
shouldn't drive anymore because of my
judgment being
impaired give us
time we need more time to process than
you allow us to respond before you move
on don't bombard us with questions we're
just normal human beings with um a good
mind and just normal
people um the Demag it do um bring up
different
uh
problems you know such as such a speech
now my speech um while I'm sitting here
talking to you there's words just
disappear out of my
vocabulary and that's why you could see
me struggling there a couple of we bits
that's because a normal conversational
word and whenever it disappears I have
to fish for another word that will fit
in slot on this
place but your mind's going around like
a washing machine and it it can't pick
the words out sometimes yeah it still
sticks with me that that day um I felt
very rushed and uh it was very blunt um
there's no easy way to deliver bad news
but I I it was very very blunt I thought
and we left with no uh no information at
all that that Friday afternoon we went
out for the weekend
and with absolutely nothing I thought I
thought it only weeks to live after that
you know so I did and I think more time
would have helped and maybe a bit more
compassion with the from the
consultant don't make assumptions about
us don't presume you know what we want
feel or need or what we might be able to
understand or decide discuss it with us
directly give our loved ones the this is
me person centered document to help you
care for me
effectively yeah I had gone to a local
an
Department this would be a few years ago
now and I had said to the nurse who had
after gone through from triage you know
been called into the back area you know
to be waiting to be seen by a doctor and
to have some sort of Bloods or whatever
done and I had said to her that I had a
dementia diagnosis and she instantly
dismissed it and told me just tell the
doctor and walked away and I have to say
that put me into a bit of a panic mode
because I sort of thought I didn't feel
safe then uh I sort of thought I should
have taken a way better of time time
even just by saying okay we've taken
note of that but if you need us to go to
the toilet or if you need any help with
anything you know just give one of us a
shout but I sort of felt it wasn't taken
seriously that it and I thought it was
something that she did need to know you
know I thought it was something that she
needed to take note of and to be aware
of
and you know as I say I just sort of
felt a bit more unsafe than if had have
been given a way bit of time cuz I sort
of thought if I need to go to the toilet
or I need you know who do I say to I
didn't feel after that I could say to
any other nurse who came into to me by
the way I have a dementia diagnosis
because of the way she had treated
me I learned more about
dementia I worked with
people who
were true
professionals who were truly
impressive in their
approaches and
who helped
me so
much to
identify what I could do as opposed to
all the all these things that I couldn't
do notes help us to
remember provide written information
using jarg andfree language to help us
to
understand help us to keep notes so that
we can keep track of what is happening
for example when I attend Ed a hospital
I needed to meet an individual staff
member who was fairly aware of dementia
and helped me
support on a regular basis throughout my
stay especially with regards to
explaining and noting the key aspects of
my appointment and how to cope well in
the ward itself
so if you have someone
who has
dementia ensure
that you are making clear to the
individual what is being
discussed what is
being agreed
and that there is someone with
them that
can
either take notes for
them if they do not have the
ability to make
clear and any decisions that are
taken to make clear
anything that has
been that has been
discussed environment may affect us more
than
you the environment we are in
affects us more than you provide a
calming environment and opportunities to
engage in activities that mean something
to
us use person centered tools like this
is me to find out more about me to
tailor activities to meet my needs
specifically designed quiet places and
mus girls can
help there are also important issues
regarding how the building itself looks
unfamiliar surroundings noises and busy
unclear spaces can be challenging and
lead the agitation and
confusion it's important for a dimension
person to have an individual space away
from others I think navigation and we
finding is also important and it is help
to have appropriate signs ideally they
should be slightly large with clear
words placed at face level and not too
high merals and painting can also be
helpful ideally colors that aren't too
dark such as red and green I recently
found it difficult to find uh tight uh
toilet near my bed until the Staff
member helped me find it as it didn't
have a sign but the biggest thing would
be
disorientation and confusion uh you know
of coming out of a room and knowing
which way to turn and what way to go and
that's why for me sign AG is vital you
know in all situations and if there's
good sign AG I'm much more confident and
and can live much more
independently I would describe my head
as like a washing machine you know of so
much G through and try
to process things you know that would be
the biggest
challenge it's it's even more confusing
cuz you're already not well you know
you're already worried about what's
going on why you're there uh and the
noise and you know yourself anybody is
sort of in an particularly in an NA
Department there's so much banging and
cluttering and there's noise going on
either side of you in front of you
behind you you know there's so many
conversations going on uh you know quite
often you're planted quite close to the
nursery station because there's no
cubicles um you know and there's all the
noise and all the movements sort going
on that and it it can become very very
confusing and uh you know it's a hard
thing to process any information and
then when they come to speak to you you
know there's so much noise going on
there's so much backgr noise
and conversations going on around you
that is hard to process what actually
been said to you whereas again a very
simple thing would be to have somewhere
that once they know you have a dementia
diagnosis and to ask the person you know
what can we do to help and I think most
people would say if I could have a quiet
room to have whenever the doctor's
talking to me I think that would make a
big difference you know you would sort
of know that during that important time
when you're meant to be able to take
information in you know that they would
take you somewhere that that could
happen easier than it does in the busy
any
Department it was again with I mention
in hospitals it was a new hospital
absolutely
beautiful like an into a very Swanky
hotel but you go in there you're not
coming back out there is no signage
anywhere and the every Corridor looks
exactly the same and you sort of have to
go up in the left and go long a bit then
go down and a left and go long a bit and
then come back up again you know um
because of the waya they intertwined and
as I say you can out have a lift but
there's no signage to tell you to turn
left turn right or what way to go you
know and that was a horrible
experience well I have had the
experience of um going into Hospital
under an am with an ambulance J in the
times of
covid
and the ambulance team were fantastic
cuz they were aware of my challenges
they thought I had a triple A um but it
actually turned out to be kidney stones
but when they took me into the hospital
rather than just sitting
there in the general area they
accelerated my Passage through to being
on a a bed in one of the cubicles
because they knew that with my
behavioral variant of of of of of the
dementia of the the FTD the frontal
temporal dementia that my filters had
disappeared I would say things as I felt
about them I would swear which I
wouldn't have done in the past but
frustration the feeling of not being
able to express yourself as as I once
did these things lead to just filterless
behaviors and it's not that you're being
unkind or nasty to the staff it's just
how things come across so it's important
that the staff in that environment build
a rapport with the patient build the
trust and the confidence where they can
exchange freely and
happily and the second time I um
developed culat my eye and I went to the
ation first of all it was late on in the
evening and uh he he rang the casualty
to say expect me so they were expecting
it and again they knew at that time I
was living with the Mana so the uh
consultant actually saw me and the the
emergency department was very busy so
she actually took me to a very quiet
place away from the the emergency
department and they did all all the had
to do at that time
and her care and even the nursing care
was was was was first class at that time
with really noise and and a lot of
people yeah I find people's faces just
blur and the noise just it really
scrambles my brain I can't think or
focus on anything with with noise a
quiet place would be ideal yeah
yeah assume we have capacity don't make
assumptions about our level of capacity
or ability to engage in our care
planning and decision
making I may not have capacity to make
every decision but there will be some
decisions I can still make and want to
make don't speak to our family members
and ignore us speak directly to us first
and allow us to defer to our support
person if we need to
ask me what you
need what sorry I would want them to ask
me what I needed or wanted not to
presume they know because they might
have had somebody in earlier that day or
the day before or the week before with
the dementia diagnosis he needs
something different to what I would need
you know so I would always say you
know treat that person as an individual
and find out what you can do that will
make them them more comfortable feel
safer and and in the turn that will ease
your workload because if the person with
the dementia diagnosis feels relaxed and
feels at ease they're less likely to be
given hustle or be kicking off about
something I'm a sitting in the outside
wetting room when she asked me could it
come into the room and I SP to you if
you want your son to come in you can
come and I says no I'll just going
myself and when I went into the room she
was going shook my hand and says to me
Martin I'm sorry to tell you I'm not
sure the exact words but you have
Alzheimer's
dementia well you're you're taken back
you're just shock she says you want me
to get your son bring him in and I I
says no not definitely not to my son I
get my sons together when to go home and
I'll tell them when to go home I got
them settled down and things I says look
I feel gr I still feel the same thing
I'm still your daddy I'm still the thing
and I'm still get carrying on and two of
my sons are two
M Twins and there there we go oh God not
be able to tell him anything now not
keep a secret he can't keep anything but
it was it was good the experience was
good be aware of our details don't make
us repeat our story multiple times it
makes us feel like we are being tested
Ed read your colleagues assessments
repeating information is
exhausting for us yeah again I think
that's it you know the nurse comes in
you see the nurse and Tre eyes you tell
them the story you then see whoever you
move to into the cubicles or into the
back bit of the any you tell them your
story the doctor then comes in or a
doctor comes in and you tell them it but
there may be not the particular doctor
you need to see if it's something
specific you're there for you know if it
was for example something to do with
your heart you know you would get a
general doctor come in talk oh you need
to you know we need to get something
done from Cardiology or whatever they
can die and you have to repeat the whole
thing again uh and that can become quite
frustrating and you sort of think you
know can you not read you know can you
not actually look at the notes that have
been taken um 10 times beforehand uh and
you s of are they're trying to trick you
right here you know trying to get you to
say something different to what you had
said before I think it is I think it's a
challenge you know because as I say by
you're that stage you're already in a
real state of confusion and panic
and um a bit more unsettled you know so
to be asked the same story over again
can become very frustrating and I think
at times in I think you can become a bit
sharper than maybe that what you would
normally be but it's because you sort of
you're fed up with the length of time
you sort of have sitting there probably
waiting anyway and you haven't seen
anybody and then the next person come
say ask the exactly the same question
again you s think like this has moved on
nowhere you know you
haven't you know you're asking me what
the person asked me two hours ago but
you're doing nothing different but yes I
think it is a challenge you know with I
think it's a challenge for anybody but I
think for somebody with a dementia
diagnosis yesterday is more of a
challenge you use Clear
language if you are going to perform an
intervention talk to us
beforehand and explain each step in
clear words or with gestures if our
understanding is very
limited give us
time explaining the procedure will help
us to
participate if I need reassurance
reassure me I'm not saying you have to
have dementia to understand it what I'm
saying is what I said to students is
take it easy at the beginning don't
bombard them with a rapid release of
questions and don't L link questions
together make the subject if it is
driving something like
that say are you driving your
car wait for the answer and then if they
say no I'm not then you can discuss it
with them but I think if you go into
something you know it only makes them I
can't interrupt this but I don't agree
with her so very gently say l thank you
very much for coming to talk to me and I
know very little uh about how you're
feeling at the moment so can you tell me
how you felt when you got your diagnosis
what went before did you think you had
dementia and how you felt when you
actually were told you have
dementia makes a
difference Health and Social Care
staff working with any form of
dementia
need to
communicate
clearly with any
individual with any form of
dementia they
need to give clear
instructions their need
to
ensure that
people with whom they are
working
have a clear
understanding of
what is being
discussed and that they
have made clear
here
exactly what is being
shared what is being
said maintain our confidentiality and
dignity share information with us
sensitively and take into
consideration our confidentiality
privacy and dignity are
important we may not want other patients
visitors to know we have
dementia yeah within the hold of
dementia I find myself falling apart I
find
myself
unable to be the person I was
to
communicate the
way I should be able to
communicate I
lost my
skills I lost a lot
of what was
what being
me as a
person
was I
was I was
lost well for for myself or anybody of
the just P his like hard if I come in as
a
patient they don't know why I've got the
Mana unless I tell them I've got the
Mana don't don't have me
to have to say that I've got the Manion
just treat me where courtesy of of think
most most sitting rooms in the hospital
you know are like they're Havoc if it
comes to a thing many of places been in
I've turned around and says look I'm in
the early stages of the Mana could you
give me a we bit of time
here and just things get mixed up for I
think could just if my name would come
up in that
computer without me having to say and
200 people or 100 people behind me
listening he's got the Mana list he's
different it's different just just come
up on the computer they made away they
know they I've got the Mana where we're
just talking about a blue heart or
purple or something like that and see
what were the attitude changes that
those change have used are have used our
we th card or we IDE I've used to be
smart card not the smart card uh JN card
I've used the JN card the difference
those things make and change people's
attitude it's wonderful wonderful
provide a support
person having a designated support
person can help to keep us calm and
reassured one key person who supports us
through our stay makes a huge difference
to our Hospital experience I had to go
and get an operation to take out a tumor
on my
leg and uh it was quite difficult
because the specialist even though she
was uh taking the the tumor out she was
quite um a lot of words that she was
using was very difficult for me to
understand because they were quite
Technical and she then got a a a young
nurse to come in and help me because she
also knocked me out for six hours she
put me asleep for 6 hours where she was
on a lot of things she was help the the
the other lady was helping me she met me
I was there for about um a full full day
overnight
and that young lady was a major help to
me in the hospital because she helped me
even write down my words she helped me
even find places and she also said uh
even tomorrow when you go home now that
you've been operated this is what you do
so even though the specialist operated
me well that lady was a massive helper
she made the difference and I I because
I spoke to the specialist and you even
use my card and said I know you're going
to help me but I've got Alzheimer's and
I need someone to talk to me that give
me advice and um because some of the
things you've said you're going to do I
haven't really understood fully what's
going to happen or even how I help
myself so and when that other lady came
in she was massively helpful to me
possibly like other people with Dem
Mantia I find that sometimes the
difficult to understand if I haven't
heard about things for a while so that
other lady was a bit more explaining and
also helped me make notes to write down
a great understanding of what was going
to happen to me and particularly how I
dealt with myself the next few days when
I got home having that interface between
the
consultant and also uh uh uh uh the
patient with that specialist nurse was
invaluable and that I think is something
which can be really helpful to other
people one thing that I would insist
[Music]
on would be
that I
had someone with
me that I trust
someone with me
that
could be
there
to like say I would either be taking my
own
notes that's another thing I'd lost my
writing skills i' had lost I mean
as well as losing my
verbosity I had
lost my ability to
write and I have been practicing
writing just to get myself back off to
speed to be able
to communicate effectively
I've also been
reading a
lot to try
and ensure that my communication
is as it should
be as I consider it should
be cuz I'm a hard
Taskmaster the following scene is based
on our real life
experiences of poor health care
interactions
[Music]
without a clear
introduction we may feel rushed or
panicked unsure of what is
happening which may unnecessarily
increase our
anxiety and generate unexpected
[Music]
reactions insufficient support with wayf
finding could leave us disoriented ated
and
Confused ultimately reducing our powers
of
concentration for the following
[Music]
appointment disorganized and chaotic
clinical space may be distracting or
overwhelming for us reducing ability to
focus and
communicate not explaining procedures or
interventions clearly in advance can
cause us upset or
distress especially as our dementia
advances not explaining next steps in
advance increases our
anxiety and
[Music]
confusion uh Hazel and baby is that
right yeah I'm
Dr tonight
without a clear and full
introduction we may not realize the
purpose of the
appointment
um no I'm not I'm not really seeing
anything there there's no results back
just yet poor positioning can hinder
effective communication with
us not to
good we'll maybe asking as repetitive
questions without
context can make us feel like we are
being
tested speaking to a carer instead of
directly to us shows a presumption about
our
capacity the following scene is based on
our real life experiences of positive
healthc care interaction
[Music]
thank you
[Music]
the consultant comes okay and I'll F
this across the H yeah all
right there we go like the wait the
consultant will be right in through the
door thank you
how are you I'm Dr sville I'm one of the
Consultants it's nice to meet you it's
Davey is that right Dave yeah Davey I I
haven't met you before um I understand
that you're you're here to talk about
some results that's right is that
correct be okay yeah sure I I haven't
been to doing too bad been keeping busy
and very
active so I do and uh yeah just keep
keep busy okay okay how have you been
sleeping recently sleep's been a bit on
off um but uh I always get caught up
sometimes away quite early right but uh
I can get caught up the next night okay
and what time would you go to bed at
roughly normally try half time 11:00 um
probably a bit overeen of anything right
I started sweet stuff I Can't Get Enough
at the whatever's uh going on you know
right okay and then just about some of
your medications um has anything changed
recently at all no they've kept it
they kept the medication as it is right
we can maybe spend a bit more time
looking at well really not not too bad
just how how how do you see things
progressing for for myself okay okay so
if you've got that Rapport it makes a
real difference and show appreciation
cuz the staff do an amazing thing and in
very difficult environment and I have to
say thank you to the nursing staff and
to the medics who do take such good care
of
us thank you for staying with us
throughout this
documentary we hope it has provided you
with a deeper understanding of what it
is like to live with dementia and has
offered practical tips that you can now
put into
practice finally a big thank you from
all the members at dementa ni for the
work that you do
that has a positive impact on the daily
lives of real people like
us matter have to assume we have
capacity mhm is that the size of my
bladder the size of my
nose those words my feet went from
beneath me could not believe what I
[Music]
I I
saw I
give it's a slippy R but I keep my feet
bled I have the strength to hold the C
I've been
handed If I Stumble if my feet fall or
if I need
assistance I know the journey is long
but it's so wor
that my voice is mind I don't need
someone to say what's on my mind though
the love I have to help me is the best
that you could find and I worry for my
loved ones cuz the future is so wonder I
stay strong
it's
ay but I keep
my I have the strength to hold the C
I've been
handed If I Stumble my feet fall or if I
need some assistance I know the journey
long
but it's the wor that distance
[Music]
I found my
place surrounded by
faces who understand
me our worries and
fears so disappear after
[Music]
Aver and a warm cup of tea