♪I won't lie I was terrified when the doctor said those words♪
♪My feet went from beneath me could not believe what I just heard♪
♪If I judged my condition from what I saw on television♪
♪I'd give up♪
S1 944 ,000 people are estimated to be currently living with dementia in the UK
[Music]
Dementia killed almost double the number of women than men in 2020
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Dementia has been the leading cause of death in women since 2011
[Music]
9% of people over 65 have dementia.
[Music]
Dementia will impact 50% of us
either through a personal diagnosis or by caring for someone who has it.
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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.
[Music]
Dementia care costs in Northern Ireland are projected to increase 192%
from 800 million in 2019 to 2.4 billion in 2040.
Wayfinding in unfamiliar places can be more challenging
for people living with dementia.
Environment may affect people living with dementia more than most.
Noisy and chaotic spaces can feel disorientating and overwhelming,
may increase anxiety or frustration, causing changes in behaviour.
Everyday life for people living with dementia can be exhausting
though it may not be obvious to you.
It takes longer for people living with dementia to process information.
Our brains have to work harder to filter out external stimuli
often leaving us feeling depleted, exhausted and spent.
This makes our symptoms of dementia more evident.
[Music]
74,000 800 people are estimated to be living with young onset dementia
in the UK and Ireland
[Music]
Young onset dementia is when symptoms of dementia start before the age of 65
[Music]
Dementia NI members formed a working group in 2022
that included eight individuals living with dementia like me,
supported by four staff members working collaboratively together:
one from dementia NI
and three from the Southern and Southeast Health and Social Care Trusts.
The members of dementia NI are always looking for opportunities to engage
with hospital and social care staff to describe what it's like
to live with dementia and to share with them our challenges as well as ways
we can best be supported in both clinical and hospital environments.
However, speaking to every trust member in person is an impossible task.
So we decided to create a documentary to help us interact
with members of the Health and Social Care services to help bridge this gap.
Over the course of 22 months we met regularly to decide the content
of this film, sharing our own personal experiences across the spectrum,
both positive and challenging experiences.
We thought it would be beneficial to provide staff with 10 top tips
for supporting people like us living with dementia.
We believe these these practices can be easily implemented
without adding an extra burden to staff
and will lead to an improved staff-patient interaction
and in the long run will save time; Many people have commented:
"What is good for people living with dementia is good for everyone."
And we the members of dementia NI are sure you will find this to be so too.
We know you will find the following individual experiences engaging
even if somewhat emotional at times,
and that you will be able to put some of the practical tips into action
[Introducing members of Dementia NI -- the producers of this training resource --
and their experiences within health and social care settings]
S2 I'm Davie Michael McElhinney from County Fermanagh
I was diagnosed with frontal temporal dementia 7 years ago
I was aged 54.
S3 My name is Martin Murtagh
My dementia is Alzheimer's dementia
S4 So my name is Peter Alexander I was born in England, Twickenham,
so the good old rugby place.
S5 My name is Gerard Doran, I was diagnosed with dementia when I was 61.
S6 Yes, I'm Christopher Higgins
and my dementia was discovered just two years ago.
S7 Yes, my name's Allison, Allison Bachelor, I live in Dundonald
and was diagnosed with Alzheimer's in April 2017
S8 I'm a newly diagnosed person with dementia.
My past knowledge of dementia was that I was a social worker in hospital
S9 Hi, my name is Tom, Tom Heatly, and
I have dementia, I've been diagnosed
with dementia with Lewy bodies
that was back about just over a year now.
Treat us with common courtesy.
S8 Treat us with respect, as valued, capable adults
Be aware of your facial expression, tone of voice
and your non-verbal communication
And when the students came, they said: "Oh I see here this person has dementia,
I don't know how to speak to dementia."
And I think that is the problem.
They think they're speaking to the dementia.
But I always said to them: "So what if they have dementia?
speak to the person first.
You will hear a little bit when they reply about de the way they are affected,
but just keep speaking to the person behind the dementia
because it's the person you want to talk to.
S9 Basically you talk about valuing an individual.
In all those years that I have been a trainer in the trust,
basic values are the primary important factor
S4 What I would say, yes:
if I was to write a book from a person who has dementia,
it would be to say I'm hurting inside too.
I might not be able to express it,
but I'm still the same person as I was when I was younger.
I am still that today,
it's just that the person I am is getting locked away more and more inside me.
So don't treat me any differently.
I'm still the same person as I was
even though you might have some preconceived ideas
that because I got dementia, I'm an incontinent old person.
but I'm not: I was diagnosed at the age of 49
and at that time I was told that I shouldn't work anymore
and that I shouldn't drive anymore because of my judgment being impaired.
S8 Give us time
We need more time to process than you.
Allow us to respond before you move on.
Don't bombard us with questions.
S? We're just normal human beings with a good mind
and just normal people.
The dementia does bring up different problems,
you know, such a speech: now my speech, while I'm sitting here talking to you,
there's -- words just disappear out of my vocabulary
and that's why you could see me struggling there a couple of wee bits
that's because a normal conversational word
whenever it disappears I have to fish for another word that will fit
in the slot in this place,
but your mind's going around like a washing machine
and it can't pick the words out sometimes.
S? Yeah it still sticks with me that that day I felt very rushed
and uh it was very blunt.
There's no easy way to deliver bad news but it was very very blunt I thought
and we left with no information at all that Friday afternoon.
We went out for the weekend and with absolutely nothing.
I thought, I thought with only weeks to live after that, you know.
So I did and I think more time would have helped
and maybe a bit more compassion with the, from the consultant.
S8 Don't make assumptions about us.
Don't presume you know what we want, feel or need
or what we might be able to understand or decide.
Discuss us with us directly.
Give our loved ones the "This is me" person-centered document
to help you care for me effectively.
S? Yeah I had gone to a local ANE (?) Department.
This would be a few years ago now.
And I had said to the nurse who had after gone through from triage, you know,
been called into the back area, you know,
to be waiting to be seen by a doctor and to have
some sort of bloods or whatever done,
and I had said to her that I had dementia diagnosis
and she instantly dismissed it and told me "Just tell the doctor" and walked away.
And I have to say that put me into a bit of a panic mode
because I sort of thought, I didn't feel safe then,
I sort of thought that she should have taken a wee bit of time,
even just by saying: "Okay we've taken note of that
but if you need us to go to the toilet or if you need any help with anything,
you know, just give one of us a shout."
But I sort of felt it wasn't taken seriously,
that it, and I thought it was something, that she did need to know, you know,
I thought it was something that she had needed to take note of
and to be aware of and, you know, as I say, I just sort of felt
a bit more unsafe than if had have been given a wee bit of time
cuz I sort of thought if I need to go to the toilet
or I need, you know, who do I say to, I didn't feel after that
I could say to any other nurse who came in to to me:
"By the way, I have a dementia diagnosis"
because of the way she had treated me.
S? I learned more about dementia
I worked with people who were true professionals,
who were truly impressive in their approaches
and who helped me so much to identify what I could do
as opposed to all the all these things that I couldn't do.
S? Notes help us to remember.
Provide written information using jargon-free language
to help us to understand.
Help us to keep notes so that we can keep track of what is happening.
S? For example when I attended a hospital,
I needed to meet an individual staff member who was fairly aware of dementia
and helped me support
on a regular basis throughout my stay especially with regards to
explaining and noting the key aspects of my appointment
and how to cope well in the ward itself
S? So if you have someone who has dementia
ensure that you are making clear to the individual what is being discussed,
what is being agreed,
and that there is someone with them that can either take notes for them
if they do not have the ability to make clear
any decisions that are taken,
to make clear anything that has been, that has been discussed
S? Environment may affect us more than you
The environment we are in affects us more than you.
Provide a calming environment and opportunities to engage
in activities that mean something to us.
Use person_centered tools like "This is me" to find out more about me,
to tailor activities to meet my needs,
specifically designed quiet places and murals can help.
S? There are also important issues regarding how the building itself looks.
unfamiliar surroundings, noises and busy unclear spaces can be challenging
and lead the agitation and confusion.
it's important for a dementia person to have an individual space
away from others, I think.
Navigation and way finding is also important
and it is helpful to have appropriate signs.
Ideally they should be slightly large,
with clear words placed at face level and not too high
Murals and painting can also be helpful,
ideally colors that aren't too dark, such as red and green
I recently found it difficult to find tight uh, toilet near my bed
until the Staff member helped me find it as it didn't have a sign.
S? But the biggest thing would be disorientation and confusion, you know,
of coming out of a room and knowing which way to turn and what way to go
and that's why for me signage is vital, you know, in all situations
and if there's good signage I'm much more confident
and I can live much more independently
but I would describe my head
as like a washing machine you know of so much can trying
to process things, you know, that would be the biggest challenge.
It's even more confusing, cuz you're already not well, you know,
you're already worried about what's going on, why you're there
and the noise and you know yourself anybody is sort of affected,
in an E&A Department.
There's so much banging and cluttering and there's noise going
on either side of you in front of you
behind you, you know, there's so many conversations going on,
you know, quite often you're planted quite close to the nursery station
because there's no cubicles, you know, and there's all the noise
and all the movements sort of going on that
and it it can become very very confusing
and you know, it's a hard thing to process any information
and then when they come to speak to you
you know there's so much noise going on
there's so much background noise and conversations going on around you
that is hard to process what's actually being said to you
whereas again a very simple thing would be to have somewhere
that, once they know you have a dementia diagnosis
and to ask the person, you know, "What can we do to help?"
and I think most people would say:
"If I could have a quiet room to have whenever the doctor's talking to me."
I think that would make a big difference, you know,
you would sort of know that during that important time
when you're meant to be able to take information in,
you know, that they would take you somewhere that,
that could happen easier than it does in the busy A&E Department
It was a game which I mentioned in our pause (?)
It was a new hospital absolutely beautiful like an into a NDFI 20 (?) hotel
but you go in there you're not coming back out
there is no signage anywhere and every corridor looks exactly the same
and you sort of have to go up in the lift and go along a bit then
go down in a lift and go along a bit and
then come back up again, you know, because of the way they're intertwined
and as I say, you come out of a lift but there's no signage to tell you
to turn left, turn right or what way to go,
you know, and that was a horrible experience
S? Well, I have had the experience of going into hospital
under an am.. with an ambulance during the times of Covid
and the ambulance team were fantastic
because they were aware of my challenges.
They thought I had a triple A but it actually turned out to be kidney stones
but when they took me into the hospital, rather than just sitting there
in the general area, they accelerated my Passage through
to being on a a bed in one of the cubicles
because they knew that with my behavioural variant of the dementia, of the FTD,
the frontal temporal dementia, that my filters had disappeared:
I would say things as I felt about them, I would swear,
which I wouldn't have done in the past, but frustration,
the feeling of not being able to express yourself as as I once did,
these things lead to just filterless behaviours.
And it's not that you're being unkind or nasty to the staff,
it's just how things come across.
So it's important that the staff in that environment
build a rapport with the patient, build the trust and the confidence
where they can exchange freely and happily.
S? And the second time I developed scintillitis (?) in my eye
and I went to the patient portal (?) late in the evening
and he rang the casualty to say they should expect me,
so, they were expecting them and again they knew at that time
I was living with dementia, so the consultant actually saw me
and the emergency department was very busy.
So she actually took me to a very quiet place,
away from the the emergency department
and they did all they had to do at that time.
And her care and even the nursing care was first class at that time.
With really noise and a lot of people, yeah I find people's faces just blur
and the noise just, it really scrambles my brain.
I can't think or focus on anything with noise.
A quiet place would be ideal yeah, yeah
Assume we have capacity.
Don't make assumptions about our level of capacity
or ability to engage in our care-planning and decision-making
I may not have capacity to make every decision
but there will be some decisions I can still make and want to make.
Don't speak to our family members and ignore us,
speak directly to us first
and allow us to defer to our support person if we need to
S? Ask me what you need,
what -- sorry -- I would want them to ask me, what I needed or wanted ,
not to presume they know
because they might have had somebody in earlier that day
or the day before or the week before with the dementia diagnosis:
he needs something different to what I would need, you know,
so I would always say, you know, treat that person as an individual
and find out what you can do that will make them them more comfortable
feel safer,
and and in the turn that will ease your workload
because if the person with the demenia diagnosis feels relaxed
and feels at ease, they're less likely to be giving hustle
or be kicking off about something
S? I'm a sitting in the outside the waiting-room
when she asked me could come into the room and I'll speak to you
if you want your son to come in, he can come.
And I says no I'll just go in myself.
And when I went into the room she was going, she shook my hand
and says to me: "Martin I'm sorry to tell you
I'm not sure the exact words but you have Alzheimer's dementia"
Well, you're you're taken aback, you're just in shock.
She says "Do you want me to get your son, bring him in?"
And I say "No, not definitely not to my son:
I'll get my sons together when I go home
and I'll tell them when I go home, I'll get them settled down and I think
that I'll say 'Look, I feel great, I still feel the same thing
I'm still your daddy I'm still the thing and I'll still get carrying on'."
And two of my sons are ... (?) twin (?
and they were going like oh God(?)
not be able to tell him anything now (?)
like not keep a secret he can't keep anything
but it was it was good, the experience was good.
S? Be aware of our details
Don't make us repeat our story multiple times.
It makes us feel like we are being tested
Read your colleagues assessments;
Repeating information is exhausting for us
S? Yeah again I think that's it, the nurse comes in,
you see the nursing triage, you tell them the story.
You then see whoever you move to into the cubicles
or into the back set of things (?) and you tell them your story.
The doctor then comes in or a doctor comes in
and you tell them it but they maybe not the particular doctor you need to see
if it's something specific you're there for,
if it was for example something to do with your heart, you know,
you would get a general doctor come and talk:
"Oh you need to get something done from Cardiology" or whatever.
They call down and you have to repeat the whole thing again
And that can become quite frustrating and you sort of think:
"Can you not read, can you not actually look at the notes
that have been taken umpteen times beforehand?"
And you sort of "Are they're trying to trick you right here,
trying to get you to say something different
to what you had said before?"
I think it is, I think it's a challenge, you know because as I say, by
you're at that stage you're already in a real state of confusion and panic
and a bit more unsettled.
So to be asked the same story over again
can become very frustrating and I think at times
you can become a bit sharper than maybe that what you would normally be
but it's because you sort of, you're fed up with the length of time
you have sitting there probably waiting anyway
and you haven't seen anybody.
And then the next person comes in to ask exactly the same question again
you think like "This has moved on nowhere!
You know you haven't, you're asking me
what the person asked me two hours ago but you're doing nothing different!"
but yes, I think it is a challenge, you know with --
I think it's a challenge for anybody,
I think for somebody with a dementia diagnosis,
yes, it is more of a challenge
S? Use clear language.
If you are going to perform an intervention, talk to us beforehand
and explain each step in clear words or with gestures
if our understanding is very limited.
Give us time, explaining the procedure will help us to participate.
If I need reassurance, reassure me
S? I'm not saying you have to have dementia to understand it
What I'm saying is what I said to students, is:
"Take it easy at the beginning, don't bombard them
with a rapid release of questions and don't link questions together.
Make the subject, if it is driving, something like that:
say: "Are you driving your car?"
Wait for the answer,
and then if they say: "no, I'm not" then you can discuss it with them.
But I think if you go into something you know, it only makes them:
"I can't interrupt this but I don't agree with her".
So, very gently say, l thank you very much for coming to talk to me
and I know very little about how you're feeling at the moment.
So can you tell me how you felt when you got your diagnosis?
What went before?
Did you think you had dementia?
And how you felt when you actually were told you have dementia?"
It makes a difference.
S? Health and Social Care staff working with any form of dementia
need to communicate clearly
with any individual with any form of dementia.
They need to give clear instructions.
They need to ensure that people with whom they are working
have a clear understanding of what is being discussed.
And that they have made clear
exactly what is being shared what is being said.
S? Maintain our confidentiality and dignity.
Share information with us sensitively
and take into consideration our confidentiality.
Privacy and dignity are important.
We may not want other patients/visitors to know we have dementia
Yeah, within the hold of dementia, I find myself falling apart,
I find myself unable to be the person I was
to communicate the way I should be able to communicate.
I lost my skills, I lost a lot of what was,
what being me as a person was.
I was, I was lost.
(S?) Well, for myself or anybody, they just treat us like hard of hearing (?)
But if I come in as a patient, they don't know I've got dementia
unless I tell them I've got dementia
Don't, don't have me to have to say that I've got dementia,
just treat me with courtesy of, I think
most, most sitting rooms in the hospital, you know are like they're havoc.
If it comes to a thing, many such places where I've been in,
I've turned around and says: "Look I'm in the early stages of dementia,
could you give me a we bit of time, here?"
and just things get mixed up for -- I think if just,
if my name would come up in that computer without me having to say
and 200 people or 100 people behind me listening:
"He's got dementia listen, he's different .........(?)"
it's different just just come up on the computer
they made a way they know I've got dementia;
well we're just talking about a blue heart or purple or something like that
and see what, where the attitude changes,
that those changes have used are have used our
we th card or we IDE I've used to be
smart card not the smart card uh JN card I've used the JN card
the difference those things make and change people's attitude,
it's wonderful wonderful
S? Provide a support person.
Having a designated support person can help to keep us calm and reassured.
One key person who supports us through our stay makes a huge difference
to our Hospital experience
S? I had to go and get an operation to take out a tumor on my leg
and it was quite difficult
because the specialist, even though she was taking the the tumor out,
she was quite -- a lot of words that she was using
was very difficult for me to understand because they were quite technical
and she then got a young nurse to come in and help me because
she also knocked me out for six hours, she put me asleep for 6 hours
where she was --
and a lot of things she was help, the other lady was helping me,
she met me.
I was there for about a full day overnight
and that young lady was a major help to me in the hospital
because she helped me even write down my words,
she helped me even find places and she also said:
"Even tomorrow when you go home now that you've been operated,
this is what you do."
So even though the specialist operated me well,
that lady was a massive helper.
She made the difference and I -- because I spoke to the specialist
and you even used my card and I said I know you're going to help me
but I've got Alzheimer's and I need someone to talk to me, that give me advice
and because some of the things you've said you're going to do
I haven't really understood fully what's going to happen
or even how I help myself.
So, when that other lady came in, she was massively helpful to me.
Possibly like other people with Dementia
I find that some things are difficult to understand
if I haven't heard about things for a while.
So that other lady was a bit more explaining
and also helped me make notes to write down:
a great understanding of what was going to happen to me
and particularly how I dealt with myself the next few days when I got home
S? Having that interface between the consultant
and also the patient with that specialist nurse was invaluable.
And that, I think, is something which can be really helpful to other people.
S? One thing that I would insist on would be that I had
someone with me that I trust, someone with me that could be there,
to like, say, (?) I would either be taking my own notes.
That's another thing I'd lost my writing skills
I'd lost, I mean,
as well as losing my verbosity I had lost my ability to write
and I have been practicing writing
just to get myself back off to speed,
to be able to communicate effectively
I've also been reading a lot to try and ensure
that my communication is as it should be,
as I consider it should be,
because I'm a hard taskmaster.
The following scene is based
on our real life
experiences of poor health care
interactions
[Music]
S? Without a clear introduction, we may feel rushed or panicked,
unsure of what is happening, which may unnecessarily increase our anxiety
and generate unexpected reactions.
Insufficient support with wayfinding could leave us disorientated and confused,
ultimately reducing our powers of concentration
for the following appointment.
Disorganized and chaotic clinical space may be distracting or overwhelming for us,
reducing ability to focus and communicate
Not explaining procedures or interventions clearly in advance
can cause us upset or distress, especially as our dementia advances.
Not explaining next steps in advance increases our anxiety and confusion.
S? Hazel and David, is that right?
S? Yeah.
S? I'm Dr ..... (?) [background voices]
S? Without a clear and full introduction, we may not realize
the purpose of the appointment.
S? No I'm not I'm not really seeing anything,
there there's no results back just yet
S? Poor positioning can hinder effective communication with us
(Indistinct background voices) ... Not to good we'll maybe ...
S? Asking us repetitive questions without context can make us feel
like we are being tested.
Speaking to a carer instead of directly to us
shows a presumption about our capacity.
S? The following scene is based on our real life experiences
of positive healthcare interactions
[Indistinct voices]
[Music]
S? The consultant comes to see about things (?)
And I'll fix this across the H S? yeah S? all right? (?)
there we go like the wait the
consultant will be right in through the
door thank you
how are you I'm Dr sville I'm one of the
Consultants it's nice to meet you it's
Davey is that right Dave yeah Davey I I
haven't met you before um I understand
that you're you're here to talk about
some results that's right is that
correct be okay yeah sure I I haven't
been to doing too bad been keeping busy
and very
active so I do and uh yeah just keep
keep busy okay okay how have you been
sleeping recently sleep's been a bit on
off um but uh I always get caught up
sometimes away quite early right but uh
I can get caught up the next night okay
and what time would you go to bed at
roughly normally try half time 11:00 um
probably a bit overeen of anything right
I started sweet stuff I Can't Get Enough
at the whatever's uh going on you know
right okay and then just about some of
your medications um has anything changed
recently at all no they've kept it
they kept the medication as it is right
we can maybe spend a bit more time
looking at well really not not too bad
just how how how do you see things
progressing for for myself okay okay so
if you've got that Rapport it makes a
real difference and show appreciation
cuz the staff do an amazing thing and in
very difficult environment and I have to
say thank you to the nursing staff and
to the medics who do take such good care
of
us thank you for staying with us
throughout this
documentary we hope it has provided you
with a deeper understanding of what it
is like to live with dementia and has
offered practical tips that you can now
put into
practice finally a big thank you from
all the members at dementa ni for the
work that you do
that has a positive impact on the daily
lives of real people like
us matter have to assume we have
capacity mhm is that the size of my
bladder the size of my
nose those words my feet went from
beneath me could not believe what I
[Music]
I I
saw I
give it's a slippy R but I keep my feet
bled I have the strength to hold the C
I've been
handed If I Stumble if my feet fall or
if I need
assistance I know the journey is long
but it's so wor
that my voice is mind I don't need
someone to say what's on my mind though
the love I have to help me is the best
that you could find and I worry for my
loved ones cuz the future is so wonder I
stay strong
it's
ay but I keep
my I have the strength to hold the C
I've been
handed If I Stumble my feet fall or if I
need some assistance I know the journey
long
but it's the wor that distance
[Music]
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