Hear Our Voice

♪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

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Dementia has been the leading cause of death
in women since 2011

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9% of people over 65 have dementia.

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Dementia will impact 50% of us

either through a personal diagnosis or
by caring for someone who has it.

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1.6 million people will be living
with dementia in the UK by 2040

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Dementia is the most feared
health condition by 60% of people over 65.

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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

S? 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 demenia diagnosis feels relaxed

and feels at ease, they're less likely
to be giving hustle

or be kicking off about something

S? I'm a sitting in the outside
the waiting-room

when she asked me could come
into the room and I'll speak to you

if you want your son to come in,
he can come.

And I says no I'll just go in myself.

And when I went into the room
she was going, she 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 aback,
you're just in shock.

She says "Do you want me to get your son,
bring him in?"

And I say "No, not definitely
not to my son:

I'll get my sons together
when I go home

and I'll tell them when I go home,
I'll get them settled down and I think

that I'll say 'Look, I feel great,
I still feel the same thing

I'm still your daddy I'm still the thing
and I'll still get carrying on'."

And two of my sons are ... (?) twin (?

and they were going like
oh God(?)

not be able to tell him
anything now (?)

like not keep a secret
he can't keep anything

but it was it was good,
the experience was good.

S? Be aware of our details

Don't make us repeat our story
multiple times.

It makes us feel like we are being tested

Read your colleagues assessments;

Repeating information is exhausting
for us

S? Yeah again I think that's it,
the nurse comes in,

you see the nursing triage,
you tell them the story.

You then see whoever you move to
into the cubicles

or into the back set of things (?)
and you tell them your story.

The doctor then comes in
or a doctor comes in

and you tell them it but they maybe not
the particular doctor you need to see

if it's something specific
you're there for,

if it was for example something to do
with your heart, you know,

you would get a general doctor
come and talk:

"Oh you need to get something done
from Cardiology" or whatever.

They call down and you have to repeat
the whole thing again

And that can become quite frustrating
and you sort of think:

"Can you not read, can you not actually
look at the notes

that have been taken
umpteen times beforehand?"

And you sort of "Are they're trying
to trick you right here,

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 at that stage you're already
in a real state of confusion and panic

and a bit more unsettled.

So to be asked the same story over again

can become very frustrating
and I think at times

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 have sitting there
probably waiting anyway

and you haven't seen anybody.

And then the next person comes in
to ask exactly the same question again

you think like
"This has moved on nowhere!

You know you haven't, 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,

I think for somebody with a dementia
diagnosis,

yes, it is more of a challenge

S? 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

S? 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 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 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?"

It makes a difference.

S? 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.

They 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

exactly what is being shared
what is being said.

S? 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.

(S?) Well, for myself or anybody,
they just treat us like hard of hearing (?)

But if I come in as a patient,
they don't know I've got dementia

unless I tell them I've got dementia

Don't, don't have me to have to say
that I've got dementia,

just treat me with courtesy of, I think

most, most sitting rooms in the hospital,
you know are like they're havoc.

If it comes to a thing, many such places
where I've been in,

I've turned around and says: "Look I'm
in the early stages of dementia,

could you give me a we bit of time, here?"

and just things get mixed up for --
I think if 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 dementia listen, he's different
.........(?)"

it's different just just come up
on the computer

they made a way they know
I've got dementia;

well we're just talking about a blue heart
or purple or something like that

and see what, where the attitude
changes,

that those changes 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

S? 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

S? I had to go and get an operation
to take out a tumor on my leg

and it was quite difficult

because the specialist, even though
she was taking the the tumor out,

she was quite --
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 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 --

and a lot of things she was help,
the other lady was helping me,

she met me.

I was there for about a 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:

"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 -- because
I spoke to the specialist

and you even used my card and I 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 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, when that other lady came in,
she was massively helpful to me.

Possibly like other people with Dementia

I find that some things
are 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

S? Having that interface between
the consultant

and also the patient
with that specialist nurse was invaluable.

And that, I think, is something which
can be really helpful to other people.

S? One thing that I would insist 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'd 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,

because I'm a hard taskmaster.

The following scene is based

on our real life

experiences of poor health care

interactions

[Music]

S? Without a clear introduction,
we may feel rushed or panicked,

unsure of what is happening, which may
unnecessarily increase our anxiety

and generate unexpected reactions.

Insufficient support with wayfinding
could leave us disorientated and confused,

ultimately reducing our
powers of concentration

for the following 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 confusion.

S? Hazel and David, is that right?

S? Yeah.

S? I'm Dr ..... (?) [background voices]

S? Without a clear and full introduction,
we may not realize

the purpose of the appointment.

S? No I'm not I'm not really
seeing anything,

there there's no results back just yet

S? Poor positioning can hinder
effective communication with us

(Indistinct background voices)
... Not to good we'll maybe ...

S? Asking us 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.

S? The following scene is based on
our real life experiences

of positive healthcare interactions

[Indistinct voices]

[Music]

S? The consultant comes
to see about things (?)

And I'll fix this across the H
S? yeah S? 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]

[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