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♪I won't lie I was terrified
when the doctor said those words♪

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♪My feet went from beneath me
could not believe what I just heard♪

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♪If I judged my condition
from what I saw on television♪

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♪I'd give up♪

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S1 944 ,000 people are estimated to be
currently living with dementia in the UK

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[Music]

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Dementia killed almost double
the number of women than men in 2020

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[Music]

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

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[Music]

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9% of people over 65 have dementia.

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[Music]

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Dementia will impact 50% of us

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

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[Music]

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

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[Music]

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

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[Music]

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Dementia care costs in Northern Ireland
are projected to increase 192%

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from 800 million in 2019
to 2.4 billion in 2040.

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Wayfinding in unfamiliar places
can be more challenging

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for people living with dementia.

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Environment may affect people living
with dementia more than most.

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Noisy and chaotic spaces can feel
disorientating and overwhelming,

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may increase anxiety or frustration,
causing changes in behaviour.

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Everyday life for people living
with dementia can be exhausting

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though it may not be obvious to you.

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It takes longer for people living
with dementia to process information.

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Our brains have to work harder
to filter out external stimuli

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often leaving us feeling depleted,
exhausted and spent.

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This makes our symptoms of dementia
more evident.

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[Music]

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

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in the UK and Ireland

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[Music]

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

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[Music]

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Dementia NI members formed a working group
in 2022

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that included eight individuals
living with dementia like me,

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supported by four staff members
working collaboratively together:

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one from dementia NI

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and three from the Southern and Southeast
Health and Social Care Trusts.

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The members of dementia NI are always
looking for opportunities to engage

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with hospital and social care staff
to describe what it's like

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to live with dementia and to share
with them our challenges as well as ways

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we can best be supported in both
clinical and hospital environments.

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However, speaking to every trust member
in person is an impossible task.

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So we decided to create a documentary
to help us interact

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with members of the Health and Social Care
services to help bridge this gap.

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Over the course of 22 months we met 
regularly to decide the content

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of this film, sharing our own personal
experiences across the spectrum,

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both positive and challenging experiences.

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We thought it would be beneficial
to provide staff with 10 top tips

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for supporting people like us
living with dementia.

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We believe these these practices
can be easily implemented

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without adding an extra burden to staff

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and will lead to an improved
staff-patient interaction

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and in the long run will save time;
Many people have commented:

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"What is good for people living
with dementia is good for everyone."

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And we the members of dementia NI
are sure you will find this to be so too.

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We know you will find the following
individual experiences engaging

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even if somewhat emotional at times,

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and that you will be able to put some
of the practical tips into action

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[Introducing members of Dementia NI --
the producers of this training resource --

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and their experiences within health and
social care settings]

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S2 I'm Davie Michael McElhinney
from County Fermanagh

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I was diagnosed with
frontal temporal dementia 7 years ago

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I was aged 54.

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S3 My name is Martin Murtagh

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My dementia is Alzheimer's dementia

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S4 So my name is Peter Alexander
I was born in England, Twickenham,

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so the good old rugby place.

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S5 My name is Gerard Doran, I was
diagnosed with dementia when I was 61.

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S6 Yes, I'm Christopher Higgins

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and my dementia was discovered
just two years ago.

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S7 Yes, my name's Allison,
Allison Bachelor, I live in Dundonald

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and was diagnosed with Alzheimer's
in April 2017

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S8 I'm a newly diagnosed person
with dementia.

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My past knowledge of dementia was
that I was a social worker in hospital

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S9 Hi, my name is Tom, Tom Heatly,
and

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I have dementia, I've been diagnosed

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with dementia with Lewy bodies

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that was back about just over a year now.

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Treat us with common courtesy.

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S8 Treat us with respect,
as valued, capable adults

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Be aware of your facial expression,
tone of voice

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and your non-verbal communication

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And when the students came, they said:
"Oh I see here this person has dementia,

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I don't know how to speak to dementia."

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And I think that is the problem.

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They think they're speaking
to the dementia.

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But I always said to them: "So what
if they have dementia?

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speak to the person first.

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You will hear a little bit when they reply
about de the way they are affected,

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but just keep speaking to the person
behind the dementia

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because it's the person
you want to talk to.

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S9 Basically you talk about
valuing an individual.

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In all those years that I have been
a trainer in the trust,

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basic values are the primary
important factor

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S4 What I would say, yes:

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if I was to write a book from a person
who has dementia,

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it would be to say I'm hurting inside too.

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I might not be able to express it,

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but I'm still the same person as I was
when I was younger.

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I am still that today,

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it's just that the person I am is getting
locked away more and more inside me.

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So don't treat me any differently.

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I'm still the same person as I was

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even though you might have 
some preconceived ideas

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that because I got dementia,
I'm an incontinent old person.

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but I'm not: I was diagnosed
at the age of 49

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and at that time I was told that
I shouldn't work anymore

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and that I shouldn't drive anymore
because of my judgment being impaired.

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S8 Give us time

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We need more time to process than you.

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Allow us to respond before you move on.

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Don't bombard us with questions.

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S? We're just normal human beings with 
a good mind

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and just normal people.

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The dementia does bring up
different problems,

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you know, such a speech: now my speech,
while I'm sitting here talking to you,

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there's -- words just disappear
out of my vocabulary

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and that's why you could see me
struggling there a couple of wee bits

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that's because a normal
conversational word

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whenever it disappears I have to fish
for another word that will fit

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in the slot in this place,

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but your mind's going around like
a washing machine

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and it can't pick the words out sometimes.

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S? Yeah it still sticks with me that
that day I felt very rushed

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and uh it was very blunt.

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There's no easy way to deliver bad news
but it was very very blunt I thought

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and we left with no information at all
that Friday afternoon.

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We went out for the weekend
and with absolutely nothing.

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I thought, I thought with only weeks
to live after that, you know.

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So I did and I think more time
would have helped

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and maybe a bit more compassion
with the, from the consultant.

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S8 Don't make assumptions about us.

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Don't presume you know what we want,
feel or need

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or what we might be able to understand
or decide.

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Discuss us with us directly.

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Give our loved ones the "This is me"
person-centered document

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to help you care for me effectively.

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S? Yeah I had gone to a local
ANE (?) Department.

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This would be a few years ago now.

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And I had said to the nurse who had after
gone through from triage, you know,

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been called into the back area, you know,

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to be waiting to be seen by a doctor
and to have

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some sort of bloods or whatever done,

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and I had said to her that I had
dementia diagnosis

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and she instantly dismissed it and told me
"Just tell the doctor" and walked away.

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And I have to say that put me
into a bit of a panic mode

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because I sort of thought,
I didn't feel safe then,

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I sort of thought that she should
have taken a wee bit of time,

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even just by saying:
"Okay we've taken note of that

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but if you need us to go to the toilet or
if you need any help with anything,

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you know, just give one of us a shout."

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But I sort of felt it wasn't
taken seriously,

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that it, and I thought it was something,
that she did need to know, you know,

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I thought it was something that
she had needed to take note of

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and to be aware of and, you know,
as I say, I just sort of felt

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a bit more unsafe than if
had have been given a wee bit of time

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cuz I sort of thought if I need
to go to the toilet

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or I need, you know, who do I say to, 
I didn't feel after that

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I could say to any other nurse
who came in to to me:

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"By the way, I have a dementia diagnosis"

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because of the way she had treated me.

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S? I learned more about dementia

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I worked with people who were
true professionals,

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who were truly impressive
in their approaches

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and who helped me so much
to identify what I could do

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as opposed to all the all these things
that I couldn't do.

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S? Notes help us to remember.

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Provide written information
using jargon-free language

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to help us to understand.

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Help us to keep notes so that
we can keep track of what is happening.

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S? For example when I attended a hospital,

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I needed to meet an individual staff
member who was fairly aware of dementia

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and helped me support

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on a regular basis throughout my stay
especially with regards to

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explaining and noting the key aspects
of my appointment

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and how to cope well in the ward itself

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S? So if you have someone who has dementia

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ensure that you are making clear
to the individual what is being discussed,

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what is being agreed,

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and that there is someone with them
that can either take notes for them

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if they do not have the ability
to make clear

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any decisions that are taken,

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to make clear anything that has been,
that has been discussed

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S? Environment may affect us more than you

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The environment we are in
affects us more than you.

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Provide a calming environment
and opportunities to engage

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in activities that mean something to us.

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Use person_centered tools like 
"This is me" to find out more about me,

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to tailor activities to meet my needs,

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specifically designed quiet places
and murals can help.

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S? There are also important issues
regarding how the building itself looks.

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unfamiliar surroundings, noises and
busy unclear spaces can be challenging

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and lead the agitation and confusion.

200
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it's important for a dementia person
to have an individual space

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away from others, I think.

202
00:19:54,143 --> 00:19:57,781
Navigation and way finding
is also important

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and it is helpful to have
appropriate signs.

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Ideally they should be slightly large,

205
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with clear words placed
at face level and not too high

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00:20:10,706 --> 00:20:14,098
Murals and painting can also be helpful,

207
00:20:14,346 --> 00:20:18,983
ideally colors that aren't too dark,
such as red and green

208
00:20:20,320 --> 00:20:27,423
I recently found it difficult to find
tight uh, toilet near my bed

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00:20:27,723 --> 00:20:32,921
until the Staff member helped me find it
as it didn't have a sign.

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00:20:32,921 --> 00:20:40,200
S? But the biggest thing would be
disorientation and confusion, you know,

211
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of coming out of a room and knowing
which way to turn and what way to go

212
00:20:43,945 --> 00:20:48,431
and that's why for me signage is vital,
you know, in all situations

213
00:20:48,431 --> 00:20:50,934
and if there's good signage
I'm much more confident

214
00:20:50,934 --> 00:20:53,320
and I can live much more independently

215
00:20:53,320 --> 00:20:55,440
but I would describe my head

216
00:20:55,440 --> 00:20:57,280
as like a washing machine you know of so
much can trying

217
00:20:59,320 --> 00:21:04,699
to process things, you know, that would be
the biggest challenge.

218
00:21:05,525 --> 00:21:08,870
It's even more confusing,
cuz you're already not well, you know,

219
00:21:09,280 --> 00:21:12,204
you're already worried
about what's going on, why you're there

220
00:21:12,784 --> 00:21:18,098
and the noise and you know yourself
anybody is sort of affected,

221
00:21:18,098 --> 00:21:19,242
in an E&A Department.

222
00:21:19,242 --> 00:21:23,190
There's so much banging and cluttering
and there's noise going

223
00:21:23,190 --> 00:21:24,949
on either side of you in front of you

224
00:21:24,949 --> 00:21:27,873
behind you, you know,
there's so many conversations going on,

225
00:21:28,524 --> 00:21:32,856
you know, quite often you're planted
quite close to the nursery station

226
00:21:32,856 --> 00:21:36,974
because there's no cubicles, you know,
and there's all the noise

227
00:21:36,974 --> 00:21:39,030
and all the movements
sort of going on that

228
00:21:39,030 --> 00:21:41,889
and it it can become very very confusing

229
00:21:41,889 --> 00:21:46,796
and you know, it's a hard thing
to process any information

230
00:21:46,796 --> 00:21:48,633
and then when they come
to speak to you

231
00:21:49,680 --> 00:21:51,559
you know there's so much noise going on

232
00:21:51,559 --> 00:21:56,760
there's so much background noise
and conversations going on around you

233
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that is hard to process
what's actually being said to you

234
00:22:00,021 --> 00:22:03,729
whereas again a very simple thing
would be to have somewhere

235
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that, once they know you have
a dementia diagnosis

236
00:22:08,000 --> 00:22:10,779
and to ask the person, you know,
"What can we do to help?"

237
00:22:10,779 --> 00:22:13,013
and I think most people would say:

238
00:22:13,013 --> 00:22:17,062
"If I could have a quiet room to have
whenever the doctor's talking to me."

239
00:22:17,960 --> 00:22:21,900
I think that would make a big difference,
you know,

240
00:22:21,900 --> 00:22:24,480
you would sort of know that
during that important time

241
00:22:24,480 --> 00:22:27,030
when you're meant to be able to take
information in,

242
00:22:27,820 --> 00:22:30,577
you know, that they would
take you somewhere that,

243
00:22:30,577 --> 00:22:36,500
that could happen easier
than it does in the busy A&E Department

244
00:22:36,720 --> 00:22:40,080
It was a game which I mentioned
in our pause (?)

245
00:22:40,080 --> 00:22:46,872
It was a new hospital absolutely
beautiful like an into a NDFI 20 (?) hotel

246
00:22:46,872 --> 00:22:49,578
but you go in there
you're not coming back out

247
00:22:49,578 --> 00:22:55,822
there is no signage anywhere and
every corridor looks exactly the same

248
00:22:55,822 --> 00:22:59,960
and you sort of have to go up in the lift
and go along a bit then

249
00:22:59,960 --> 00:23:01,880
go down in a lift and go along a bit and

250
00:23:01,880 --> 00:23:07,253
then come back up again, you know,
because of the way they're intertwined

251
00:23:07,253 --> 00:23:11,299
and as I say, you come out of a lift but
there's no signage to tell you

252
00:23:11,299 --> 00:23:14,760
to turn left, turn right
or what way to go,

253
00:23:14,760 --> 00:23:18,600
you know, and that was
a horrible experience

254
00:23:18,600 --> 00:23:25,776
S? Well, I have had the experience
of going into hospital

255
00:23:26,320 --> 00:23:30,109
under an am.. with an ambulance
during the times of Covid

256
00:23:30,875 --> 00:23:36,080
and the ambulance team were fantastic

257
00:23:36,080 --> 00:23:38,729
because they were aware of my challenges.

258
00:23:39,039 --> 00:23:45,833
They thought I had a triple A but it
actually turned out to be kidney stones

259
00:23:46,240 --> 00:23:49,120
but when they took me into the hospital,
rather than just sitting there

260
00:23:51,480 --> 00:23:55,120
in the general area, they accelerated
my Passage through

261
00:23:58,000 --> 00:24:01,159
to being on a a bed in one of the cubicles

262
00:24:01,159 --> 00:24:09,225
because they knew that with my behavioural
variant of the dementia, of the FTD,

263
00:24:09,225 --> 00:24:14,161
the frontal temporal dementia,
that my filters had disappeared:

264
00:24:14,161 --> 00:24:19,890
I would say things as I felt about them,
I would swear,

265
00:24:20,262 --> 00:24:24,541
which I wouldn't have done in the past,
but frustration,

266
00:24:24,541 --> 00:24:30,075
the feeling of not being able
to express yourself as as I once did,

267
00:24:30,075 --> 00:24:33,627
these things lead to
just filterless behaviours.

268
00:24:34,035 --> 00:24:38,173
And it's not that you're being unkind
or nasty to the staff,

269
00:24:38,482 --> 00:24:40,777
it's just how things come across.

270
00:24:40,886 --> 00:24:44,025
So it's important that the staff
in that environment

271
00:24:44,025 --> 00:24:49,923
build a rapport with the patient,
build the trust and the confidence

272
00:24:49,923 --> 00:24:54,100
where they can exchange
freely and happily.

273
00:24:54,100 --> 00:24:59,014
S? And the second time I developed
scintillitis (?) in my eye

274
00:24:59,423 --> 00:25:02,501
and I went to the patient portal (?)
late in the evening

275
00:25:02,501 --> 00:25:06,275
and he rang the casualty to say
they should expect me,

276
00:25:06,275 --> 00:25:09,535
so, they were expecting them and again
they knew at that time

277
00:25:09,535 --> 00:25:13,133
I was living with dementia,
so the consultant actually saw me

278
00:25:13,133 --> 00:25:15,781
and the emergency department
was very busy.

279
00:25:15,781 --> 00:25:18,230
So she actually took me
to a very quiet place,

280
00:25:18,230 --> 00:25:20,940
away from the the emergency department

281
00:25:20,940 --> 00:25:24,404
and they did all they had to do
at that time.

282
00:25:25,000 --> 00:25:29,667
And her care and even the nursing care
was first class at that time.

283
00:25:30,410 --> 00:25:36,153
With really noise and a lot of people,
yeah I find people's faces just blur

284
00:25:36,686 --> 00:25:40,091
and the noise just, it really
scrambles my brain.

285
00:25:40,091 --> 00:25:43,270
I can't think or focus on anything
with noise.

286
00:25:43,270 --> 00:25:45,669
A quiet place would be ideal yeah, yeah

287
00:25:46,240 --> 00:25:50,199
Assume we have capacity.

288
00:25:50,199 --> 00:25:54,023
Don't make assumptions
about our level of capacity

289
00:25:54,023 --> 00:25:59,903
or ability to engage in our care-planning
and decision-making

290
00:26:00,159 --> 00:26:04,704
I may not have capacity
to make every decision

291
00:26:05,112 --> 00:26:11,743
but there will be some decisions
I can still make and want to make.

292
00:26:13,136 --> 00:26:17,617
Don't speak to our family members
and ignore us,

293
00:26:17,617 --> 00:26:21,200
speak directly to us first

294
00:26:21,200 --> 00:26:26,593
and allow us to defer to our support
person if we need to

295
00:26:28,760 --> 00:26:31,880
S? Ask me what you need,

296
00:26:31,880 --> 00:26:37,939
what -- sorry -- I would want them
to ask me, what I needed or wanted ,

297
00:26:37,939 --> 00:26:39,464
not to presume they know

298
00:26:39,464 --> 00:26:43,480
because they might have had
somebody in earlier that day

299
00:26:43,480 --> 00:26:46,641
or the day before or the week before
with the dementia diagnosis:

300
00:26:46,641 --> 00:26:49,909
he needs something different
to what I would need, you know,

301
00:26:49,909 --> 00:26:55,220
so I would always say, you know,
treat that person as an individual

302
00:26:55,220 --> 00:26:59,874
and find out what you can do that will
make them them more comfortable

303
00:26:59,874 --> 00:27:01,204
feel safer,

304
00:27:01,982 --> 00:27:05,903
and and in the turn
that will ease your workload

305
00:27:05,903 --> 00:27:10,120
because if the person with
the demenia diagnosis feels relaxed

306
00:27:10,120 --> 00:27:15,450
and feels at ease, they're less likely
to be giving hustle

307
00:27:15,450 --> 00:27:18,913
or be kicking off about something

308
00:27:19,633 --> 00:27:21,885
S? I'm a sitting in the outside
the waiting-room

309
00:27:22,486 --> 00:27:26,080
when she asked me could come
into the room and I'll speak to you

310
00:27:26,080 --> 00:27:28,240
if you want your son to come in,
he can come.

311
00:27:28,240 --> 00:27:30,063
And I says no I'll just go in myself.

312
00:27:30,063 --> 00:27:33,215
And when I went into the room
she was going, she shook my hand

313
00:27:33,215 --> 00:27:35,993
and says to me: 
"Martin I'm sorry to tell you

314
00:27:36,386 --> 00:27:39,823
I'm not sure the exact words
but you have Alzheimer's dementia"

315
00:27:40,724 --> 00:27:44,181
Well, you're you're taken aback,
you're just in shock.

316
00:27:44,415 --> 00:27:47,421
She says "Do you want me to get your son,
bring him in?"

317
00:27:47,909 --> 00:27:51,909
And I say "No, not definitely
not to my son:

318
00:27:51,909 --> 00:27:53,771
I'll get my sons together
when I go home

319
00:27:53,771 --> 00:27:57,306
and I'll tell them when I go home,
I'll get them settled down and I think

320
00:27:57,306 --> 00:28:00,240
that I'll say 'Look, I feel great,
I still feel the same thing

321
00:28:00,240 --> 00:28:03,586
I'm still your daddy I'm still the thing
and I'll still get carrying on'."

322
00:28:03,586 --> 00:28:07,950
And two of my sons are ... (?) twin (?

323
00:28:07,950 --> 00:28:09,930
and they were going like
oh God(?)

324
00:28:09,930 --> 00:28:11,865
not be able to tell him
anything now (?)

325
00:28:11,865 --> 00:28:14,189
like not keep a secret
he can't keep anything

326
00:28:14,189 --> 00:28:16,919
but it was it was good,
the experience was good.

327
00:28:16,919 --> 00:28:19,941
S? Be aware of our details

328
00:28:20,480 --> 00:28:24,270
Don't make us repeat our story
multiple times.

329
00:28:24,699 --> 00:28:28,286
It makes us feel like we are being tested

330
00:28:30,169 --> 00:28:32,640
Read your colleagues assessments;

331
00:28:32,640 --> 00:28:38,136
Repeating information is exhausting
for us

332
00:28:38,136 --> 00:28:41,629
S? Yeah again I think that's it,
the nurse comes in,

333
00:28:41,640 --> 00:28:44,205
you see the nursing triage,
you tell them the story.

334
00:28:44,615 --> 00:28:47,826
You then see whoever you move to
into the cubicles

335
00:28:47,826 --> 00:28:51,526
or into the back set of things (?)
and you tell them your story.

336
00:28:51,526 --> 00:28:54,509
The doctor then comes in
or a doctor comes in

337
00:28:54,509 --> 00:28:59,330
and you tell them it but they maybe not
the particular doctor you need to see

338
00:28:59,330 --> 00:29:01,670
if it's something specific
you're there for,

339
00:29:01,670 --> 00:29:05,232
if it was for example something to do
with your heart, you know,

340
00:29:05,535 --> 00:29:07,807
you would get a general doctor
come and talk:

341
00:29:07,807 --> 00:29:11,744
"Oh you need to get something done
from Cardiology" or whatever.

342
00:29:11,889 --> 00:29:14,697
They call down and you have to repeat
the whole thing again

343
00:29:14,697 --> 00:29:18,626
And that can become quite frustrating
and you sort of think:

344
00:29:18,626 --> 00:29:22,553
"Can you not read, can you not actually
look at the notes

345
00:29:22,553 --> 00:29:25,507
that have been taken
umpteen times beforehand?"

346
00:29:26,166 --> 00:29:29,060
And you sort of "Are they're trying
to trick you right here,

347
00:29:29,137 --> 00:29:31,260
trying to get you to say
something different

348
00:29:31,403 --> 00:29:33,009
to what you had said before?"

349
00:29:33,009 --> 00:29:38,960
I think it is, I think it's a challenge,
you know because as I say, by

350
00:29:38,960 --> 00:29:42,449
you're at that stage you're already
in a real state of confusion and panic

351
00:29:42,449 --> 00:29:47,185
and a bit more unsettled.

352
00:29:47,460 --> 00:29:49,710
So to be asked the same story over again

353
00:29:50,063 --> 00:29:53,199
can become very frustrating
and I think at times

354
00:29:53,199 --> 00:29:56,860
you can become a bit sharper than maybe
that what you would normally be

355
00:29:56,860 --> 00:30:00,900
but it's because you sort of,
you're fed up with the length of time

356
00:30:00,900 --> 00:30:03,434
you have sitting there
probably waiting anyway

357
00:30:03,434 --> 00:30:04,915
and you haven't seen anybody.

358
00:30:04,915 --> 00:30:08,345
And then the next person comes in
to ask exactly the same question again

359
00:30:08,345 --> 00:30:10,405
you think like
"This has moved on nowhere!

360
00:30:11,007 --> 00:30:14,077
You know you haven't, you're asking me

361
00:30:14,077 --> 00:30:18,214
what the person asked me two hours ago
but you're doing nothing different!"

362
00:30:18,214 --> 00:30:21,348
but yes, I think it is a challenge,
you know with --

363
00:30:21,348 --> 00:30:23,237
I think it's a challenge for anybody,

364
00:30:23,237 --> 00:30:25,434
I think for somebody with a dementia
diagnosis,

365
00:30:25,434 --> 00:30:27,540
yes, it is more of a challenge

366
00:30:27,540 --> 00:30:29,734
S? Use clear language.

367
00:30:30,432 --> 00:30:36,767
If you are going to perform
an intervention, talk to us beforehand

368
00:30:37,301 --> 00:30:43,300
and explain each step in clear words
or with gestures

369
00:30:43,599 --> 00:30:46,720
if our understanding is very limited.

370
00:30:47,347 --> 00:30:48,880
Give us time, explaining the procedure
will help us to participate.

371
00:30:54,960 --> 00:30:59,404
If I need reassurance, reassure me

372
00:31:00,302 --> 00:31:03,788
S? I'm not saying you have to have
dementia to understand it

373
00:31:04,162 --> 00:31:07,788
What I'm saying is
what I said to students, is:

374
00:31:08,244 --> 00:31:13,342
"Take it easy at the beginning,
don't bombard them

375
00:31:13,342 --> 00:31:20,480
with a rapid release of questions
and don't link questions together.

376
00:31:20,895 --> 00:31:25,301
Make the subject, if it is driving,
something like that:

377
00:31:26,609 --> 00:31:28,966
say: "Are you driving your car?"

378
00:31:30,146 --> 00:31:31,546
Wait for the answer,

379
00:31:31,890 --> 00:31:36,811
and then if they say: "no, I'm not"
then you can discuss it with them.

380
00:31:37,301 --> 00:31:42,431
But I think if you go into something
you know, it only makes them:

381
00:31:42,926 --> 00:31:47,415
"I can't interrupt this 
but I don't agree with her".

382
00:31:47,945 --> 00:31:53,218
So, very gently say, l thank you very much
for coming to talk to me

383
00:31:53,863 --> 00:31:59,721
and I know very little about
how you're feeling at the moment.

384
00:32:00,340 --> 00:32:05,596
So can you tell me how you felt
when you got your diagnosis?

385
00:32:05,946 --> 00:32:07,360
What went before?

386
00:32:07,829 --> 00:32:10,324
Did you think you had dementia?

387
00:32:10,608 --> 00:32:16,351
And how you felt when you actually
were told you have dementia?"

388
00:32:17,320 --> 00:32:20,440
It makes a difference.

389
00:32:20,440 --> 00:32:29,057
S? Health and Social Care staff working
with any form of dementia

390
00:32:31,381 --> 00:32:38,462
need to communicate clearly

391
00:32:40,022 --> 00:32:46,800
with any individual
with any form of dementia.

392
00:32:48,010 --> 00:32:54,257
They need to give clear instructions.

393
00:32:56,764 --> 00:33:04,754
They need to ensure that people
with whom they are working

394
00:33:06,483 --> 00:33:17,152
have a clear understanding
of what is being discussed.

395
00:33:19,944 --> 00:33:28,208
And that they have made clear

396
00:33:29,998 --> 00:33:40,274
exactly what is being shared
what is being said.

397
00:33:42,740 --> 00:33:46,391
S? Maintain our confidentiality
and dignity.

398
00:33:47,098 --> 00:33:51,544
Share information with us sensitively

399
00:33:51,795 --> 00:33:57,186
and take into consideration
our confidentiality.

400
00:33:58,720 --> 00:34:02,080
Privacy and dignity are important.

401
00:34:02,765 --> 00:34:09,230
We may not want other patients/visitors
to know we have dementia

402
00:34:09,801 --> 00:34:16,949
Yeah, within the hold of dementia,
I find myself falling apart,

403
00:34:17,359 --> 00:34:27,510
I find myself unable to be
the person I was

404
00:34:29,478 --> 00:34:39,417
to communicate the way
I should be able to communicate.

405
00:34:44,075 --> 00:34:54,713
I lost my skills, I lost a lot of
what was,

406
00:34:59,698 --> 00:35:06,736
what being me as a person was.

407
00:35:14,848 --> 00:35:19,872
I was, I was lost.

408
00:35:23,750 --> 00:35:28,867
(S?) Well, for myself or anybody,
they just treat us like hard of hearing (?)

409
00:35:28,979 --> 00:35:33,238
But if I come in as a patient,
they don't know I've got dementia

410
00:35:33,238 --> 00:35:35,258
unless I tell them I've got dementia

411
00:35:37,754 --> 00:35:43,000
Don't, don't have me to have to say
that I've got dementia,

412
00:35:43,000 --> 00:35:46,200
just treat me with courtesy of, I think

413
00:35:46,200 --> 00:35:50,765
most, most sitting rooms in the hospital,
you know are like they're havoc.

414
00:35:51,567 --> 00:35:54,800
If it comes to a thing, many such places
where I've been in,

415
00:35:54,800 --> 00:35:58,223
I've turned around and says: "Look I'm
in the early stages of dementia,

416
00:35:58,223 --> 00:36:00,306
could you give me a we bit of time, here?"

417
00:36:00,480 --> 00:36:05,286
and just things get mixed up for --
I think if just,

418
00:36:05,859 --> 00:36:11,081
if my name would come up
in that computer without me having to say

419
00:36:11,366 --> 00:36:14,961
and 200 people or 100 people behind me
listening:

420
00:36:14,961 --> 00:36:19,289
"He's got dementia listen, he's different
.........(?)"

421
00:36:19,720 --> 00:36:23,384
it's different just just come up
on the computer

422
00:36:23,384 --> 00:36:25,512
they made a way they know
I've got dementia;

423
00:36:25,643 --> 00:36:29,280
well we're just talking about a blue heart
or purple or something like that

424
00:36:29,735 --> 00:36:32,000
and see what, where the attitude
changes,

425
00:36:32,000 --> 00:36:35,720
that those changes have used are have used our

426
00:36:35,720 --> 00:36:38,319
we th card or we IDE I've used to be

427
00:36:38,319 --> 00:36:42,520
smart card not the smart card uh JN card
I've used the JN card

428
00:36:42,520 --> 00:36:48,387
the difference those things make
and change people's attitude,

429
00:36:48,387 --> 00:36:50,471
it's wonderful wonderful

430
00:36:50,920 --> 00:36:52,925
S? Provide a support person.

431
00:36:53,786 --> 00:37:00,898
Having a designated support person can
help to keep us calm and reassured.

432
00:37:01,544 --> 00:37:04,960
One key person who supports us
through our stay makes a huge difference

433
00:37:09,079 --> 00:37:11,312
to our Hospital experience

434
00:37:11,815 --> 00:37:16,908
S? I had to go and get an operation
to take out a tumor on my leg

435
00:37:17,909 --> 00:37:19,680
and it was quite difficult

436
00:37:19,680 --> 00:37:24,903
because the specialist, even though
she was taking the the tumor out,

437
00:37:25,355 --> 00:37:29,000
she was quite --
a lot of words that she was using

438
00:37:29,479 --> 00:37:33,266
was very difficult for me to understand
because they were quite technical

439
00:37:33,962 --> 00:37:40,711
and she then got a young nurse
to come in and help me because

440
00:37:40,711 --> 00:37:46,119
she also knocked me out for six hours,
she put me asleep for 6 hours

441
00:37:46,119 --> 00:37:47,040
where she was --

442
00:37:47,040 --> 00:37:51,390
and a lot of things she was help,
the other lady was helping me,

443
00:37:51,390 --> 00:37:52,680
she met me.

444
00:37:52,680 --> 00:37:57,349
I was there for about a full day overnight

445
00:37:57,739 --> 00:38:02,313
and that young lady was a major help
to me in the hospital

446
00:38:02,313 --> 00:38:06,381
because she helped me even
write down my words,

447
00:38:06,677 --> 00:38:11,067
she helped me even find places
and she also said:

448
00:38:11,440 --> 00:38:15,111
"Even tomorrow when you go home
now that you've been operated,

449
00:38:15,111 --> 00:38:16,736
this is what you do."

450
00:38:17,009 --> 00:38:21,123
So even though the specialist
operated me well,

451
00:38:21,740 --> 00:38:24,151
that lady was a massive helper.

452
00:38:24,151 --> 00:38:28,695
She made the difference and I -- because
I spoke to the specialist

453
00:38:28,695 --> 00:38:32,971
and you even used my card and I said
I know you're going to help me

454
00:38:33,310 --> 00:38:39,131
but I've got Alzheimer's and I need
someone to talk to me, that give me advice

455
00:38:39,587 --> 00:38:42,853
and because some of the things
you've said you're going to do

456
00:38:43,280 --> 00:38:47,270
I haven't really understood fully
what's going to happen

457
00:38:47,270 --> 00:38:49,150
or even how I help myself.

458
00:38:49,150 --> 00:38:53,426
So, when that other lady came in,
she was massively helpful to me.

459
00:38:53,680 --> 00:38:55,700
Possibly like other people with Dementia

460
00:38:55,700 --> 00:38:58,787
I find that some things
are difficult to understand

461
00:38:59,003 --> 00:39:01,736
if I haven't heard about things
for a while.

462
00:39:02,027 --> 00:39:06,689
So that other lady was a bit
more explaining

463
00:39:07,110 --> 00:39:11,116
and also helped me make notes
to write down:

464
00:39:11,116 --> 00:39:14,065
a great understanding
of what was going to happen to me

465
00:39:14,065 --> 00:39:17,871
and particularly how I dealt with myself
the next few days when I got home

466
00:39:18,141 --> 00:39:21,015
S? Having that interface between
the consultant

467
00:39:21,408 --> 00:39:30,301
and also the patient
with that specialist nurse was invaluable.

468
00:39:30,301 --> 00:39:36,348
And that, I think, is something which
can be really helpful to other people.

469
00:39:36,680 --> 00:39:47,229
S? One thing that I would insist on
would be that I had

470
00:39:50,155 --> 00:40:08,585
someone with me that I trust,
someone with me that could be there,

471
00:40:10,037 --> 00:40:18,538
to like, say, (?) I would either be taking
my own notes.

472
00:40:20,091 --> 00:40:25,279
That's another thing I'd lost
my writing skills

473
00:40:25,279 --> 00:40:27,520
I'd lost, I mean,

474
00:40:28,400 --> 00:40:38,674
as well as losing my verbosity I had lost
my ability to write

475
00:40:40,984 --> 00:40:44,640
and I have been practicing writing

476
00:40:46,163 --> 00:40:49,151
just to get myself back off to speed,

477
00:40:50,012 --> 00:40:56,288
to be able to communicate effectively

478
00:40:59,480 --> 00:41:12,068
I've also been reading a lot
to try and ensure

479
00:41:12,068 --> 00:41:18,153
that my communication is
as it should be,

480
00:41:18,809 --> 00:41:23,371
as I consider it should be,

481
00:41:26,759 --> 00:41:29,601
because I'm a hard taskmaster.

482
00:41:32,991 --> 00:41:35,680
The following scene is based

483
00:41:35,680 --> 00:41:37,839
on our real life

484
00:41:37,839 --> 00:41:41,599
experiences of poor health care

485
00:41:41,599 --> 00:41:42,830
interactions

486
00:41:42,830 --> 00:42:02,379
[Music]

487
00:42:02,760 --> 00:42:08,119
S? Without a clear introduction,
we may feel rushed or panicked,

488
00:42:08,822 --> 00:42:15,545
unsure of what is happening, which may
unnecessarily increase our anxiety

489
00:42:16,319 --> 00:42:19,805
and generate unexpected reactions.

490
00:42:21,311 --> 00:42:29,312
Insufficient support with wayfinding
could leave us disorientated and confused,

491
00:42:29,964 --> 00:42:34,070
ultimately reducing our 
powers of concentration

492
00:42:34,070 --> 00:42:36,611
for the following appointment.

493
00:42:37,627 --> 00:42:46,326
Disorganized and chaotic clinical space
may be distracting or overwhelming for us,

494
00:42:46,326 --> 00:42:50,787
reducing ability to focus and communicate

495
00:42:52,538 --> 00:42:58,035
Not explaining procedures or interventions
clearly in advance

496
00:42:58,035 --> 00:43:04,921
can cause us upset or distress,
especially as our dementia advances.

497
00:43:06,665 --> 00:43:14,948
Not explaining next steps in advance
increases our anxiety and confusion.

498
00:43:20,760 --> 00:43:23,753
S? Hazel and David, is that right?

499
00:43:23,753 --> 00:43:24,580
S? Yeah.

500
00:43:24,580 --> 00:43:27,780
S? I'm Dr ..... (?) [background voices]

501
00:43:27,780 --> 00:43:33,487
S? Without a clear and full introduction,
we may not realize

502
00:43:33,760 --> 00:43:35,934
the purpose of the appointment.

503
00:43:39,213 --> 00:43:41,795
S? No I'm not I'm not really
seeing anything,

504
00:43:41,795 --> 00:43:43,640
there there's no results back just yet

505
00:43:45,245 --> 00:43:50,625
S? Poor positioning can hinder
effective communication with us

506
00:43:50,810 --> 00:43:56,194
(Indistinct background voices)
... Not to good we'll maybe ...

507
00:43:56,289 --> 00:44:04,383
S? Asking us repetitive questions
without context can make us feel

508
00:44:04,383 --> 00:44:07,234
like we are being tested.

509
00:44:09,112 --> 00:44:13,698
Speaking to a carer instead of
directly to us

510
00:44:14,461 --> 00:44:18,079
shows a presumption
about our capacity.

511
00:44:18,969 --> 00:44:23,977
S? The following scene is based on
our real life experiences

512
00:44:23,977 --> 00:44:27,972
of <b>positive</b> healthcare interactions

513
00:44:28,010 --> 00:44:40,023
[Indistinct voices]

514
00:44:40,368 --> 00:45:03,161
[Music]

515
00:45:03,300 --> 00:45:05,460
S? The consultant comes
to see about things (?)

516
00:45:05,460 --> 00:45:09,680
And I'll fix this across the H
S? yeah S? all right? (?)

517
00:45:12,454 --> 00:45:15,359
there we go like the wait the

518
00:45:15,359 --> 00:45:16,960
consultant will be right in through the

519
00:45:16,960 --> 00:45:21,079
door thank you

520
00:45:28,040 --> 00:45:30,400
how are you I'm Dr sville I'm one of the

521
00:45:30,400 --> 00:45:33,119
Consultants it's nice to meet you it's

522
00:45:33,119 --> 00:45:35,240
Davey is that right Dave yeah Davey I I

523
00:45:35,240 --> 00:45:37,440
haven't met you before um I understand

524
00:45:37,440 --> 00:45:39,040
that you're you're here to talk about

525
00:45:39,040 --> 00:45:40,640
some results that's right is that

526
00:45:40,640 --> 00:45:43,599
correct be okay yeah sure I I haven't

527
00:45:43,599 --> 00:45:46,160
been to doing too bad been keeping busy

528
00:45:46,160 --> 00:45:47,559
and very

529
00:45:47,559 --> 00:45:52,079
active so I do and uh yeah just keep

530
00:45:52,079 --> 00:45:54,359
keep busy okay okay how have you been

531
00:45:54,359 --> 00:45:57,119
sleeping recently sleep's been a bit on

532
00:45:57,119 --> 00:46:01,200
off um but uh I always get caught up

533
00:46:01,200 --> 00:46:03,160
sometimes away quite early right but uh

534
00:46:03,160 --> 00:46:05,760
I can get caught up the next night okay

535
00:46:05,760 --> 00:46:07,800
and what time would you go to bed at

536
00:46:07,800 --> 00:46:11,440
roughly normally try half time 11:00 um

537
00:46:11,440 --> 00:46:13,839
probably a bit overeen of anything right

538
00:46:13,839 --> 00:46:16,240
I started sweet stuff I Can't Get Enough

539
00:46:16,240 --> 00:46:19,200
at the whatever's uh going on you know

540
00:46:19,200 --> 00:46:21,960
right okay and then just about some of

541
00:46:21,960 --> 00:46:24,760
your medications um has anything changed

542
00:46:24,760 --> 00:46:27,440
recently at all no they've kept it

543
00:46:27,440 --> 00:46:30,280
they kept the medication as it is right

544
00:46:30,280 --> 00:46:32,000
we can maybe spend a bit more time

545
00:46:32,000 --> 00:46:34,240
looking at well really not not too bad

546
00:46:34,240 --> 00:46:36,599
just how how how do you see things

547
00:46:36,599 --> 00:46:40,200
progressing for for myself okay okay so

548
00:46:40,200 --> 00:46:42,680
if you've got that Rapport it makes a

549
00:46:42,680 --> 00:46:45,920
real difference and show appreciation

550
00:46:45,920 --> 00:46:49,760
cuz the staff do an amazing thing and in

551
00:46:49,760 --> 00:46:52,520
very difficult environment and I have to

552
00:46:52,520 --> 00:46:55,760
say thank you to the nursing staff and

553
00:46:55,760 --> 00:46:58,440
to the medics who do take such good care

554
00:46:58,440 --> 00:46:59,319
of

555
00:46:59,319 --> 00:47:02,400
us thank you for staying with us

556
00:47:02,400 --> 00:47:04,200
throughout this

557
00:47:04,200 --> 00:47:07,079
documentary we hope it has provided you

558
00:47:07,079 --> 00:47:10,119
with a deeper understanding of what it

559
00:47:10,119 --> 00:47:13,559
is like to live with dementia and has

560
00:47:13,559 --> 00:47:17,160
offered practical tips that you can now

561
00:47:17,160 --> 00:47:18,680
put into

562
00:47:18,680 --> 00:47:22,720
practice finally a big thank you from

563
00:47:22,720 --> 00:47:25,880
all the members at dementa ni for the

564
00:47:25,880 --> 00:47:27,559
work that you do

565
00:47:27,559 --> 00:47:30,880
that has a positive impact on the daily

566
00:47:30,880 --> 00:47:33,880
lives of real people like

567
00:47:33,880 --> 00:47:37,160
us matter have to assume we have

568
00:47:37,160 --> 00:47:40,480
capacity mhm is that the size of my

569
00:47:40,480 --> 00:47:44,359
bladder the size of my

570
00:47:50,160 --> 00:47:54,200
nose those words my feet went from

571
00:47:54,200 --> 00:47:58,839
beneath me could not believe what I

572
00:47:59,180 --> 00:48:00,800
[Music]

573
00:48:00,800 --> 00:48:03,359
I I

574
00:48:03,359 --> 00:48:06,720
saw I

575
00:48:09,559 --> 00:48:15,400
give it's a slippy R but I keep my feet

576
00:48:15,400 --> 00:48:19,359
bled I have the strength to hold the C

577
00:48:19,359 --> 00:48:21,559
I've been

578
00:48:21,559 --> 00:48:25,800
handed If I Stumble if my feet fall or

579
00:48:25,800 --> 00:48:27,680
if I need

580
00:48:27,680 --> 00:48:31,880
assistance I know the journey is long

581
00:48:31,880 --> 00:48:36,040
but it's so wor

582
00:48:36,040 --> 00:48:39,880
that my voice is mind I don't need

583
00:48:39,880 --> 00:48:43,800
someone to say what's on my mind though

584
00:48:43,800 --> 00:48:47,480
the love I have to help me is the best

585
00:48:47,480 --> 00:48:51,400
that you could find and I worry for my

586
00:48:51,400 --> 00:48:55,559
loved ones cuz the future is so wonder I

587
00:48:55,559 --> 00:48:58,720
stay strong

588
00:49:01,520 --> 00:49:02,200
it's

589
00:49:02,200 --> 00:49:06,240
ay but I keep

590
00:49:06,400 --> 00:49:10,359
my I have the strength to hold the C

591
00:49:10,359 --> 00:49:12,559
I've been

592
00:49:12,559 --> 00:49:17,400
handed If I Stumble my feet fall or if I

593
00:49:17,400 --> 00:49:21,480
need some assistance I know the journey

594
00:49:21,480 --> 00:49:23,040
long

595
00:49:23,040 --> 00:49:28,000
but it's the wor that distance

596
00:49:28,000 --> 00:49:33,079
[Music]

597
00:49:35,880 --> 00:49:39,559
[Music]

598
00:49:39,559 --> 00:49:41,200
I found my

599
00:49:41,200 --> 00:49:44,240
place surrounded by

600
00:49:44,240 --> 00:49:49,400
faces who understand

601
00:49:50,040 --> 00:49:53,200
me our worries and

602
00:49:53,200 --> 00:49:58,640
fears so disappear after

603
00:49:59,140 --> 00:50:02,079
[Music]

604
00:50:02,079 --> 00:50:07,559
Aver and a warm cup of tea