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

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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.

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74,000 800 people are estimated
to be living with young onset dementia

in the UK and Ireland

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Young onset dementia is when symptoms
of dementia start before the age of 65

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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 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]

[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