♪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 Hi, 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.
S9 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 important factor
S4 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.
S8 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.
S? We're just normal human beings with a good mind
and just normal people.
The dementia does bring up different problems,
you know, such a speech: now my speech, 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 wee bits
that's because a normal conversational word
whenever it disappears I have to fish for another word that will fit
in the slot in this place,
but your mind's going around like a washing machine
and it can't pick the words out sometimes.
S? Yeah it still sticks with me that that day I felt very rushed
and uh it was very blunt.
There's no easy way to deliver bad news but it was very very blunt I thought
and we left with no information at all that Friday afternoon.
We went out for the weekend and with absolutely nothing.
I thought, I thought with 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.
S8 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 us with us directly.
Give our loved ones the "This is me" person-centered document
to help you care for me effectively.
S? Yeah I had gone to a local ANE (?) 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 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,
I sort of thought that she should have taken a wee bit of 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 had 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 wee 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 in to to me:
"By the way, I have a dementia diagnosis"
because of the way she had treated me.
S? 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.
S? Notes help us to remember.
Provide written information using jargon-free language
to help us to understand.
Help us to keep notes so that we can keep track of what is happening.
S? For example when I attended 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
S? 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
any decisions that are taken,
to make clear anything that has been, that has been discussed
S? 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 murals can help.
S? 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 dementia person to have an individual space
away from others, I think.
Navigation and way finding is also important
and it is helpful to have appropriate signs.
Ideally they should be slightly large,
with clear words placed at face level and not too high
Murals 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 tight uh, toilet near my bed
until the Staff member helped me find it as it didn't have a sign.
S? But the biggest thing would be disorientation and confusion, 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 signage is vital, you know, in all situations
and if there's good signage I'm much more confident
and I can live much more independently
but I would describe my head
as like a washing machine you know of so much can trying
to process things, you know, that would be the biggest challenge.
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
and the noise and you know yourself anybody is sort of affected,
in an E&A 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,
you know, quite often you're planted quite close to the nursery station
because there's no cubicles, you know, and there's all the noise
and all the movements sort of going on that
and it it can become very very confusing
and 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 background noise and conversations going on around you
that is hard to process what's actually being 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 A&E Department
It was a game which I mentioned in our pause (?)
It was a new hospital absolutely beautiful like an into a NDFI 20 (?) hotel
but you go in there you're not coming back out
there is no signage anywhere and every corridor looks exactly the same
and you sort of have to go up in the lift and go along a bit then
go down in a lift and go along a bit and
then come back up again, you know, because of the way they're intertwined
and as I say, you come out of 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
S? Well, I have had the experience of going into hospital
under an am.. with an ambulance during the times of Covid
and the ambulance team were fantastic
because they were aware of my challenges.
They thought I had a triple A 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 behavioural variant of the dementia, of 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 behaviours.
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.
S? And the second time I developed scintillitis (?) in my eye
and I went to the patient portal (?) late in the evening
and he rang the casualty to say they should expect me,
so, they were expecting them and again they knew at that time
I was living with dementia, so the consultant actually saw me
and 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 they had to do at that time.
And her care and even the nursing care was first class at that time.
With really noise 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 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