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 Jud my condition from

what I saw on television I give

up

944 ,000 people are estimated to be

currently living with dementia in the

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UK dementia killed almost double the

number of women than men in

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2020 D menure has been the leading cause

of death in women since 2011

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9% of people over 65 have

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dementia 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

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2040 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

wayf finding 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 Behavior

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

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evident

74,000 800 people are estimated to be

living with young onset dementia in the

UK and

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Ireland young onset dementia is when

symptoms of dementia stop before the age

of 65

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demena 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 I'm uh debie Michael Henny from

County formana I was diagnosed with

frontal temporal dementia 7 years ago uh

I was aged

54 I my name is Martin

Mar my D is Alzheimer's dementia so my

name is Peter Alexander I was born in

England Twickenham so the good old rugby

place my name is jar Dorne um I was

diagnosed with the man out when I was

61 yes I'm Christopher Higgins and my

dementia was discovered just two years

ago yeah my name's Allison Allison

Bachelor uh I live in Dundonald and was

diagnosed with Alzheimer's in April 2017

I'm a newly diagnosed person with

dementia my past knowledge of dementia

was that I was a social worker in

hospital

hi my name is Tom Tom

hitle and

um I

have uh dementia I've been diagnosed

with uh dementia with Louis

bodies uh that was back

about just over a year

now treat us with common C

Coury treat us with respect as valued

capable

adults be aware of your facial

expression tune of voice and your

nonverbal

communication um 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

the 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]

[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