0:00:04.560,0:00:09.960
♪I won't lie I was terrified[br]when the doctor said those words♪

0:00:09.960,0:00:16.169
♪My feet went from beneath me[br]could not believe what I just heard♪

0:00:16.169,0:00:22.005
♪If I judged my condition[br]from what I saw on television♪

0:00:22.005,0:00:25.560
♪I'd give up♪

0:00:28.345,0:00:35.908
S1 944 ,000 people are estimated to be[br]currently living with dementia in the UK

0:00:35.908,0:00:40.959
[Music]

0:00:41.699,0:00:48.040
Dementia killed almost double[br]the number of women than men in 2020

0:00:48.040,0:00:53.385
[Music]

0:00:53.385,0:00:59.762
Dementia has been the leading cause of death[br]in women since 2011

0:00:59.790,0:01:04.640
[Music]

0:01:04.640,0:01:09.370
9% of people over 65 have dementia.

0:01:09.370,0:01:18.099
[Music]

0:01:18.449,0:01:21.579
Dementia will impact 50% of us

0:01:22.079,0:01:27.173
either through a personal diagnosis or[br]by caring for someone who has it.

0:01:27.173,0:01:35.480
[Music]

0:01:35.600,0:01:42.705
1.6 million people will be living[br]with dementia in the UK by 2040

0:01:43.074,0:01:48.513
[Music]

0:01:48.513,0:01:56.290
Dementia is the most feared[br]health condition by 60% of people over 65.

0:01:56.434,0:02:04.449
[Music]

0:02:05.880,0:02:12.805
Dementia care costs in Northern Ireland[br]are projected to increase 192%

0:02:12.805,0:02:19.994
from 800 million in 2019[br]to 2.4 billion in 2040.

0:02:30.390,0:02:35.329
Wayfinding in unfamiliar places[br]can be more challenging

0:02:35.329,0:02:38.091
for people living with dementia.

0:02:40.910,0:02:46.483
Environment may affect people living[br]with dementia more than most.

0:02:49.128,0:02:54.640
Noisy and chaotic spaces can feel[br]disorientating and overwhelming,

0:02:54.640,0:02:59.405
may increase anxiety or frustration,[br]causing changes in behaviour.

0:03:02.110,0:03:08.360
Everyday life for people living[br]with dementia can be exhausting

0:03:09.126,0:03:11.040
though it may not be obvious to you.

0:03:11.702,0:03:18.074
It takes longer for people living[br]with dementia to process information.

0:03:18.074,0:03:24.469
Our brains have to work harder[br]to filter out external stimuli

0:03:24.911,0:03:30.791
often leaving us feeling depleted,[br]exhausted and spent.

0:03:31.400,0:03:35.359
This makes our symptoms of dementia[br]more evident.

0:03:36.290,0:03:51.778
[Music]

0:03:51.778,0:04:01.381
74,000 800 people are estimated[br]to be living with young onset dementia

0:04:01.547,0:04:04.281
in the UK and Ireland

0:04:04.530,0:04:11.663
[Music]

0:04:11.663,0:04:19.503
Young onset dementia is when symptoms[br]of dementia start before the age of 65

0:04:19.740,0:05:05.059
[Music]

0:05:06.880,0:05:13.969
Dementia NI members formed a working group[br]in 2022

0:05:14.749,0:05:20.391
that included eight individuals[br]living with dementia like me,

0:05:21.132,0:05:26.791
supported by four staff members[br]working collaboratively together:

0:05:27.556,0:05:29.562
one from dementia NI

0:05:30.257,0:05:37.150
and three from the Southern and Southeast[br]Health and Social Care Trusts.

0:05:38.778,0:05:44.770
The members of dementia NI are always[br]looking for opportunities to engage

0:05:44.770,0:05:50.117
with hospital and social care staff[br]to describe what it's like

0:05:50.117,0:05:57.125
to live with dementia and to share[br]with them our challenges as well as ways

0:05:57.125,0:06:03.790
we can best be supported in both[br]clinical and hospital environments.

0:06:04.240,0:06:12.232
However, speaking to every trust member[br]in person is an impossible task.

0:06:12.914,0:06:18.114
So we decided to create a documentary[br]to help us interact

0:06:18.611,0:06:25.240
with members of the Health and Social Care[br]services to help bridge this gap.

0:06:26.747,0:06:33.227
Over the course of 22 months we met [br]regularly to decide the content

0:06:33.426,0:06:40.194
of this film, sharing our own personal[br]experiences across the spectrum,

0:06:41.180,0:06:45.348
both positive and challenging experiences.

0:06:46.499,0:06:52.215
We thought it would be beneficial[br]to provide staff with 10 top tips

0:06:52.743,0:06:57.303
for supporting people like us[br]living with dementia.

0:06:58.004,0:07:03.546
We believe these these practices[br]can be easily implemented

0:07:04.120,0:07:08.440
without adding an extra burden to staff

0:07:08.440,0:07:12.829
and will lead to an improved[br]staff-patient interaction

0:07:13.626,0:07:19.667
and in the long run will save time;[br]Many people have commented:

0:07:20.143,0:07:25.149
"What is good for people living[br]with dementia is good for everyone."

0:07:25.857,0:07:33.079
And we the members of dementia NI[br]are sure you will find this to be so too.

0:07:36.759,0:07:41.809
We know you will find the following[br]individual experiences engaging

0:07:42.279,0:07:45.188
even if somewhat emotional at times,

0:07:45.511,0:07:51.512
and that you will be able to put some[br]of the practical tips into action

0:07:51.646,0:07:55.486
[Introducing members of Dementia NI --[br]the producers of this training resource --

0:07:55.486,0:07:58.523
and their experiences within health and[br]social care settings]

0:07:58.900,0:08:01.749
S2 I'm Davie Michael McElhinney[br]from County Fermanagh

0:08:01.749,0:08:06.622
I was diagnosed with[br]frontal temporal dementia 7 years ago

0:08:07.152,0:08:09.280
I was aged 54.

0:08:09.885,0:08:13.440
S3 My name is Martin Murtagh

0:08:14.288,0:08:17.137
My dementia is Alzheimer's dementia

0:08:17.427,0:08:21.240
S4 So my name is Peter Alexander[br]I was born in England, Twickenham,

0:08:21.240,0:08:24.912
so the good old rugby place.

0:08:24.912,0:08:30.980
S5 My name is Gerard Doran, I was[br]diagnosed with dementia when I was 61.

0:08:31.120,0:08:33.549
S6 Yes, I'm Christopher Higgins

0:08:33.549,0:08:37.951
and my dementia was discovered[br]just two years ago.

0:08:37.951,0:08:43.013
S7 Yes, my name's Allison,[br]Allison Bachelor, I live in Dundonald

0:08:43.013,0:08:49.091
and was diagnosed with Alzheimer's[br]in April 2017

0:08:49.240,0:08:53.399
S8 I'm a newly diagnosed person[br]with dementia.

0:08:54.280,0:08:59.868
My past knowledge of dementia was[br]that I was a social worker in hospital

0:09:00.200,0:09:05.409
S9 Hi, my name is Tom, Tom Heatly,[br]and

0:09:06.819,0:09:13.240
I have dementia, I've been diagnosed

0:09:13.240,0:09:17.519
with dementia with Lewy bodies

0:09:19.259,0:09:26.188
that was back about just over a year now.

0:09:26.640,0:09:30.146
Treat us with common courtesy.

0:09:30.146,0:09:35.549
S8 Treat us with respect,[br]as valued, capable adults

0:09:36.005,0:09:41.433
Be aware of your facial expression,[br]tone of voice

0:09:41.433,0:09:45.472
and your non-verbal communication

0:09:45.839,0:09:52.989
And when the students came, they said:[br]"Oh I see here this person has dementia,

0:09:53.443,0:09:56.263
I don't know how to speak to dementia."

0:09:56.994,0:09:59.040
And I think that is the problem.

0:09:59.040,0:10:01.560
They think they're speaking[br]to the dementia.

0:10:02.297,0:10:07.754
But I always said to them: "So what[br]if they have dementia?

0:10:07.754,0:10:09.854
speak to the person first.

0:10:10.120,0:10:18.320
You will hear a little bit when they reply[br]about de the way they are affected,

0:10:18.793,0:10:23.665
but just keep speaking to the person[br]behind the dementia

0:10:23.861,0:10:27.936
because it's the person[br]you want to talk to.

0:10:29.440,0:10:34.680
S9 Basically you talk about[br]valuing an individual.

0:10:35.809,0:10:43.817
In all those years that I have been[br]a trainer in the trust,

0:10:46.672,0:11:00.944
basic values are the primary[br]important factor

0:11:01.659,0:11:04.440
S4 What I would say, yes:

0:11:05.183,0:11:11.501
if I was to write a book from a person[br]who has dementia,

0:11:13.344,0:11:17.632
it would be to say I'm hurting inside too.

0:11:18.494,0:11:21.675
I might not be able to express it,

0:11:22.600,0:11:26.139
but I'm still the same person as I was[br]when I was younger.

0:11:27.606,0:11:29.519
I am still that today,

0:11:30.399,0:11:35.032
it's just that the person I am is getting[br]locked away more and more inside me.

0:11:35.813,0:11:37.983
So don't treat me any differently.

0:11:38.720,0:11:40.624
I'm still the same person as I was

0:11:42.543,0:11:45.839
even though you might have [br]some preconceived ideas

0:11:46.517,0:11:51.549
that because I got dementia,[br]I'm an incontinent old person.

0:11:51.880,0:11:55.882
but I'm not: I was diagnosed[br]at the age of 49

0:11:55.882,0:12:00.320
and at that time I was told that[br]I shouldn't work anymore

0:12:00.734,0:12:05.696
and that I shouldn't drive anymore[br]because of my judgment being impaired.

0:12:07.658,0:12:09.000
S8 Give us time

0:12:09.985,0:12:13.359
We need more time to process than you.

0:12:13.764,0:12:18.199
Allow us to respond before you move on.

0:12:18.901,0:12:21.674
Don't bombard us with questions.

0:12:21.972,0:12:28.381
S? We're just normal human beings with [br]a good mind

0:12:28.381,0:12:30.120
and just normal people.

0:12:30.935,0:12:40.933
The dementia does bring up[br]different problems,

0:12:41.416,0:12:47.148
you know, such a speech: now my speech,[br]while I'm sitting here talking to you,

0:12:47.755,0:12:52.750
there's -- words just disappear[br]out of my vocabulary

0:12:53.445,0:12:57.183
and that's why you could see me[br]struggling there a couple of wee bits

0:12:57.760,0:13:01.000
that's because a normal[br]conversational word

0:13:01.926,0:13:07.953
whenever it disappears I have to fish[br]for another word that will fit

0:13:07.953,0:13:09.440
in the slot in this place,

0:13:10.298,0:13:13.019
but your mind's going around like[br]a washing machine

0:13:13.019,0:13:16.467
and it can't pick the words out sometimes.

0:13:17.051,0:13:21.279
S? Yeah it still sticks with me that[br]that day I felt very rushed

0:13:21.279,0:13:24.959
and uh it was very blunt.

0:13:24.959,0:13:30.209
There's no easy way to deliver bad news[br]but it was very very blunt I thought

0:13:30.639,0:13:34.800
and we left with no information at all[br]that Friday afternoon.

0:13:34.800,0:13:38.944
We went out for the weekend[br]and with absolutely nothing.

0:13:38.944,0:13:42.076
I thought, I thought with only weeks[br]to live after that, you know.

0:13:42.988,0:13:45.255
So I did and I think more time[br]would have helped

0:13:45.255,0:13:49.176
and maybe a bit more compassion[br]with the, from the consultant.

0:13:50.549,0:13:53.524
S8 Don't make assumptions about us.

0:13:54.083,0:13:58.466
Don't presume you know what we want,[br]feel or need

0:13:58.914,0:14:03.341
or what we might be able to understand[br]or decide.

0:14:03.926,0:14:06.625
Discuss us with us directly.

0:14:07.834,0:14:13.909
Give our loved ones the "This is me"[br]person-centered document

0:14:13.909,0:14:17.134
to help you care for me effectively.

0:14:18.657,0:14:22.191
S? Yeah I had gone to a local[br]ANE (?) Department.

0:14:22.926,0:14:25.011
This would be a few years ago now.

0:14:25.011,0:14:30.920
And I had said to the nurse who had after[br]gone through from triage, you know,

0:14:30.920,0:14:33.680
been called into the back area, you know,

0:14:33.680,0:14:36.264
to be waiting to be seen by a doctor[br]and to have

0:14:36.264,0:14:38.547
some sort of bloods or whatever done,

0:14:38.547,0:14:42.480
and I had said to her that I had[br]dementia diagnosis

0:14:42.830,0:14:49.323
and she instantly dismissed it and told me[br]"Just tell the doctor" and walked away.

0:14:50.024,0:14:53.160
And I have to say that put me[br]into a bit of a panic mode

0:14:53.160,0:14:55.816
because I sort of thought,[br]I didn't feel safe then,

0:14:56.059,0:14:59.081
I sort of thought that she should[br]have taken a wee bit of time,

0:14:59.081,0:15:03.260
even just by saying:[br]"Okay we've taken note of that

0:15:03.260,0:15:07.266
but if you need us to go to the toilet or[br]if you need any help with anything,

0:15:07.266,0:15:09.176
you know, just give one of us a shout."

0:15:09.466,0:15:12.553
But I sort of felt it wasn't[br]taken seriously,

0:15:12.989,0:15:17.460
that it, and I thought it was something,[br]that she did need to know, you know,

0:15:17.460,0:15:20.668
I thought it was something that[br]she had needed to take note of

0:15:20.668,0:15:26.505
and to be aware of and, you know,[br]as I say, I just sort of felt

0:15:26.505,0:15:30.769
a bit more unsafe than if[br]had have been given a wee bit of time

0:15:30.769,0:15:33.170
cuz I sort of thought if I need[br]to go to the toilet

0:15:33.170,0:15:36.160
or I need, you know, who do I say to, [br]I didn't feel after that

0:15:36.160,0:15:38.737
I could say to any other nurse[br]who came in to to me:

0:15:39.069,0:15:41.504
"By the way, I have a dementia diagnosis"

0:15:41.800,0:15:43.865
because of the way she had treated me.

0:15:45.120,0:15:48.741
S? I learned more about dementia

0:15:51.194,0:16:02.280
I worked with people who were[br]true professionals,

0:16:04.907,0:16:11.465
who were truly impressive[br]in their approaches

0:16:14.613,0:16:30.652
and who helped me so much[br]to identify what I could do

0:16:31.305,0:16:36.725
as opposed to all the all these things[br]that I couldn't do.

0:16:39.040,0:16:42.399
S? Notes help us to remember.

0:16:43.234,0:16:48.137
Provide written information[br]using jargon-free language

0:16:48.137,0:16:50.668
to help us to understand.

0:16:51.159,0:16:56.857
Help us to keep notes so that[br]we can keep track of what is happening.

0:16:57.560,0:17:00.680
S? For example when I attended a hospital,

0:17:00.680,0:17:08.234
I needed to meet an individual staff[br]member who was fairly aware of dementia

0:17:08.611,0:17:10.574
and helped me support

0:17:11.155,0:17:16.707
on a regular basis throughout my stay[br]especially with regards to

0:17:16.707,0:17:20.749
explaining and noting the key aspects[br]of my appointment

0:17:20.749,0:17:24.977
and how to cope well in the ward itself

0:17:29.000,0:17:33.160
S? So if you have someone who has dementia

0:17:39.276,0:17:52.707
ensure that you are making clear[br]to the individual what is being discussed,

0:17:54.269,0:17:58.546
what is being agreed,

0:18:00.520,0:18:12.665
and that there is someone with them[br]that can either take notes for them

0:18:14.836,0:18:23.194
if they do not have the ability[br]to make clear

0:18:28.480,0:18:31.777
any decisions that are taken,

0:18:34.841,0:18:47.819
to make clear anything that has been,[br]that has been discussed

0:18:49.320,0:18:54.577
S? Environment may affect us more than you

0:18:55.713,0:19:01.422
The environment we are in[br]affects us more than you.

0:19:02.189,0:19:07.525
Provide a calming environment[br]and opportunities to engage

0:19:07.525,0:19:10.818
in activities that mean something to us.

0:19:12.824,0:19:20.594
Use person_centered tools like [br]"This is me" to find out more about me,

0:19:20.594,0:19:24.590
to tailor activities to meet my needs,

0:19:25.520,0:19:30.400
specifically designed quiet places[br]and murals can help.

0:19:31.535,0:19:35.907
S? There are also important issues[br]regarding how the building itself looks.

0:19:36.504,0:19:43.673
unfamiliar surroundings, noises and[br]busy unclear spaces can be challenging

0:19:44.155,0:19:47.018
and lead the agitation and confusion.

0:19:47.543,0:19:51.162
it's important for a dementia person[br]to have an individual space

0:19:51.532,0:19:53.482
away from others, I think.

0:19:54.143,0:19:57.781
Navigation and way finding[br]is also important

0:19:57.781,0:20:00.909
and it is helpful to have[br]appropriate signs.

0:20:01.389,0:20:04.423
Ideally they should be slightly large,

0:20:04.423,0:20:10.150
with clear words placed[br]at face level and not too high

0:20:10.706,0:20:14.098
Murals and painting can also be helpful,

0:20:14.346,0:20:18.983
ideally colors that aren't too dark,[br]such as red and green

0:20:20.320,0:20:27.423
I recently found it difficult to find[br]tight uh, toilet near my bed

0:20:27.723,0:20:32.921
until the Staff member helped me find it[br]as it didn't have a sign.

0:20:32.921,0:20:40.200
S? But the biggest thing would be[br]disorientation and confusion, you know,

0:20:40.200,0:20:43.945
of coming out of a room and knowing[br]which way to turn and what way to go

0:20:43.945,0:20:48.431
and that's why for me signage is vital,[br]you know, in all situations

0:20:48.431,0:20:50.934
and if there's good signage[br]I'm much more confident

0:20:50.934,0:20:53.320
and I can live much more independently

0:20:53.320,0:20:55.440
but I would describe my head

0:20:55.440,0:20:57.280
as like a washing machine you know of so[br]much can trying

0:20:59.320,0:21:04.699
to process things, you know, that would be[br]the biggest challenge.

0:21:05.525,0:21:08.870
It's even more confusing,[br]cuz you're already not well, you know,

0:21:09.280,0:21:12.204
you're already worried[br]about what's going on, why you're there

0:21:12.784,0:21:18.098
and the noise and you know yourself[br]anybody is sort of affected,

0:21:18.098,0:21:19.242
in an E&A Department.

0:21:19.242,0:21:23.190
There's so much banging and cluttering[br]and there's noise going

0:21:23.190,0:21:24.949
on either side of you in front of you

0:21:24.949,0:21:27.873
behind you, you know,[br]there's so many conversations going on,

0:21:28.524,0:21:32.856
you know, quite often you're planted[br]quite close to the nursery station

0:21:32.856,0:21:36.974
because there's no cubicles, you know,[br]and there's all the noise

0:21:36.974,0:21:39.030
and all the movements[br]sort of going on that

0:21:39.030,0:21:41.889
and it it can become very very confusing

0:21:41.889,0:21:46.796
and you know, it's a hard thing[br]to process any information

0:21:46.796,0:21:48.633
and then when they come[br]to speak to you

0:21:49.680,0:21:51.559
you know there's so much noise going on

0:21:51.559,0:21:56.760
there's so much background noise[br]and conversations going on around you

0:21:56.760,0:22:00.021
that is hard to process[br]what's actually being said to you

0:22:00.021,0:22:03.729
whereas again a very simple thing[br]would be to have somewhere

0:22:03.729,0:22:08.000
that, once they know you have[br]a dementia diagnosis

0:22:08.000,0:22:10.779
and to ask the person, you know,[br]"What can we do to help?"

0:22:10.779,0:22:13.013
and I think most people would say:

0:22:13.013,0:22:17.062
"If I could have a quiet room to have[br]whenever the doctor's talking to me."

0:22:17.960,0:22:21.900
I think that would make a big difference,[br]you know,

0:22:21.900,0:22:24.480
you would sort of know that[br]during that important time

0:22:24.480,0:22:27.030
when you're meant to be able to take[br]information in,

0:22:27.820,0:22:30.577
you know, that they would[br]take you somewhere that,

0:22:30.577,0:22:36.500
that could happen easier[br]than it does in the busy A&E Department

0:22:36.720,0:22:40.080
It was a game which I mentioned[br]in our pause (?)

0:22:40.080,0:22:46.872
It was a new hospital absolutely[br]beautiful like an into a NDFI 20 (?) hotel

0:22:46.872,0:22:49.578
but you go in there[br]you're not coming back out

0:22:49.578,0:22:55.822
there is no signage anywhere and[br]every corridor looks exactly the same

0:22:55.822,0:22:59.960
and you sort of have to go up in the lift[br]and go along a bit then

0:22:59.960,0:23:01.880
go down in a lift and go along a bit and

0:23:01.880,0:23:07.253
then come back up again, you know,[br]because of the way they're intertwined

0:23:07.253,0:23:11.299
and as I say, you come out of a lift but[br]there's no signage to tell you

0:23:11.299,0:23:14.760
to turn left, turn right[br]or what way to go,

0:23:14.760,0:23:18.600
you know, and that was[br]a horrible experience

0:23:18.600,0:23:25.776
S? Well, I have had the experience[br]of going into hospital

0:23:26.320,0:23:30.109
under an am.. with an ambulance[br]during the times of Covid

0:23:30.875,0:23:36.080
and the ambulance team were fantastic

0:23:36.080,0:23:38.729
because they were aware of my challenges.

0:23:39.039,0:23:45.833
They thought I had a triple A but it[br]actually turned out to be kidney stones

0:23:46.240,0:23:49.120
but when they took me into the hospital,[br]rather than just sitting there

0:23:51.480,0:23:55.120
in the general area, they accelerated[br]my Passage through

0:23:58.000,0:24:01.159
to being on a a bed in one of the cubicles

0:24:01.159,0:24:09.225
because they knew that with my behavioural[br]variant of the dementia, of the FTD,

0:24:09.225,0:24:14.161
the frontal temporal dementia,[br]that my filters had disappeared:

0:24:14.161,0:24:19.890
I would say things as I felt about them,[br]I would swear,

0:24:20.262,0:24:24.541
which I wouldn't have done in the past,[br]but frustration,

0:24:24.541,0:24:30.075
the feeling of not being able[br]to express yourself as as I once did,

0:24:30.075,0:24:33.627
these things lead to[br]just filterless behaviours.

0:24:34.035,0:24:38.173
And it's not that you're being unkind[br]or nasty to the staff,

0:24:38.482,0:24:40.777
it's just how things come across.

0:24:40.886,0:24:44.025
So it's important that the staff[br]in that environment

0:24:44.025,0:24:49.923
build a rapport with the patient,[br]build the trust and the confidence

0:24:49.923,0:24:54.100
where they can exchange[br]freely and happily.

0:24:54.100,0:24:59.014
S? And the second time I developed[br]scintillitis (?) in my eye

0:24:59.423,0:25:02.501
and I went to the patient portal (?)[br]late in the evening

0:25:02.501,0:25:06.275
and he rang the casualty to say[br]they should expect me,

0:25:06.275,0:25:09.535
so, they were expecting them and again[br]they knew at that time

0:25:09.535,0:25:13.133
I was living with dementia,[br]so the consultant actually saw me

0:25:13.133,0:25:15.781
and the emergency department[br]was very busy.

0:25:15.781,0:25:18.230
So she actually took me[br]to a very quiet place,

0:25:18.230,0:25:20.940
away from the the emergency department

0:25:20.940,0:25:24.404
and they did all they had to do[br]at that time.

0:25:25.000,0:25:29.667
And her care and even the nursing care[br]was first class at that time.

0:25:30.410,0:25:36.153
With really noise and a lot of people,[br]yeah I find people's faces just blur

0:25:36.686,0:25:40.091
and the noise just, it really[br]scrambles my brain.

0:25:40.091,0:25:43.270
I can't think or focus on anything[br]with noise.

0:25:43.270,0:25:45.669
A quiet place would be ideal yeah, yeah

0:25:46.240,0:25:50.199
Assume we have capacity.

0:25:50.199,0:25:54.023
Don't make assumptions[br]about our level of capacity

0:25:54.023,0:25:59.903
or ability to engage in our care-planning[br]and decision-making

0:26:00.159,0:26:04.704
I may not have capacity[br]to make every decision

0:26:05.112,0:26:11.743
but there will be some decisions[br]I can still make and want to make.

0:26:13.136,0:26:17.617
Don't speak to our family members[br]and ignore us,

0:26:17.617,0:26:21.200
speak directly to us first

0:26:21.200,0:26:26.593
and allow us to defer to our support[br]person if we need to

0:26:28.760,0:26:31.880
S? Ask me what you need,

0:26:31.880,0:26:37.939
what -- sorry -- I would want them[br]to ask me, what I needed or wanted ,

0:26:37.939,0:26:39.464
not to presume they know

0:26:39.464,0:26:43.480
because they might have had[br]somebody in earlier that day

0:26:43.480,0:26:46.641
or the day before or the week before[br]with the dementia diagnosis:

0:26:46.641,0:26:49.909
he needs something different[br]to what I would need, you know,

0:26:49.909,0:26:55.220
so I would always say, you know,[br]treat that person as an individual

0:26:55.220,0:26:59.874
and find out what you can do that will[br]make them them more comfortable

0:26:59.874,0:27:01.204
feel safer,

0:27:01.982,0:27:05.903
and and in the turn[br]that will ease your workload

0:27:05.903,0:27:10.120
because if the person with[br]the demenia diagnosis feels relaxed

0:27:10.120,0:27:15.450
and feels at ease, they're less likely[br]to be giving hustle

0:27:15.450,0:27:18.913
or be kicking off about something

0:27:19.633,0:27:21.885
S? I'm a sitting in the outside[br]the waiting-room

0:27:22.486,0:27:26.080
when she asked me could come[br]into the room and I'll speak to you

0:27:26.080,0:27:28.240
if you want your son to come in,[br]he can come.

0:27:28.240,0:27:30.063
And I says no I'll just go in myself.

0:27:30.063,0:27:33.215
And when I went into the room[br]she was going, she shook my hand

0:27:33.215,0:27:35.993
and says to me: [br]"Martin I'm sorry to tell you

0:27:36.386,0:27:39.823
I'm not sure the exact words[br]but you have Alzheimer's dementia"

0:27:40.724,0:27:44.181
Well, you're you're taken aback,[br]you're just in shock.

0:27:44.415,0:27:47.421
She says "Do you want me to get your son,[br]bring him in?"

0:27:47.909,0:27:51.909
And I say "No, not definitely[br]not to my son:

0:27:51.909,0:27:53.771
I'll get my sons together[br]when I go home

0:27:53.771,0:27:57.306
and I'll tell them when I go home,[br]I'll get them settled down and I think

0:27:57.306,0:28:00.240
that I'll say 'Look, I feel great,[br]I still feel the same thing

0:28:00.240,0:28:03.586
I'm still your daddy I'm still the thing[br]and I'll still get carrying on'."

0:28:03.586,0:28:07.950
And two of my sons are ... (?) twin (?

0:28:07.950,0:28:09.930
and they were going like[br]oh God(?)

0:28:09.930,0:28:11.865
not be able to tell him[br]anything now (?)

0:28:11.865,0:28:14.189
like not keep a secret[br]he can't keep anything

0:28:14.189,0:28:16.919
but it was it was good,[br]the experience was good.

0:28:16.919,0:28:19.941
S? Be aware of our details

0:28:20.480,0:28:24.270
Don't make us repeat our story[br]multiple times.

0:28:24.699,0:28:28.286
It makes us feel like we are being tested

0:28:30.169,0:28:32.640
Read your colleagues assessments;

0:28:32.640,0:28:38.136
Repeating information is exhausting[br]for us

0:28:38.136,0:28:41.629
S? Yeah again I think that's it,[br]the nurse comes in,

0:28:41.640,0:28:44.205
you see the nursing triage,[br]you tell them the story.

0:28:44.615,0:28:47.826
You then see whoever you move to[br]into the cubicles

0:28:47.826,0:28:51.526
or into the back set of things (?)[br]and you tell them your story.

0:28:51.526,0:28:54.509
The doctor then comes in[br]or a doctor comes in

0:28:54.509,0:28:59.330
and you tell them it but they maybe not[br]the particular doctor you need to see

0:28:59.330,0:29:01.670
if it's something specific[br]you're there for,

0:29:01.670,0:29:05.232
if it was for example something to do[br]with your heart, you know,

0:29:05.535,0:29:07.807
you would get a general doctor[br]come and talk:

0:29:07.807,0:29:11.744
"Oh you need to get something done[br]from Cardiology" or whatever.

0:29:11.889,0:29:14.697
They call down and you have to repeat[br]the whole thing again

0:29:14.697,0:29:18.626
And that can become quite frustrating[br]and you sort of think:

0:29:18.626,0:29:22.553
"Can you not read, can you not actually[br]look at the notes

0:29:22.553,0:29:25.507
that have been taken[br]umpteen times beforehand?"

0:29:26.166,0:29:29.060
And you sort of "Are they're trying[br]to trick you right here,

0:29:29.137,0:29:31.260
trying to get you to say[br]something different

0:29:31.403,0:29:33.009
to what you had said before?"

0:29:33.009,0:29:38.960
I think it is, I think it's a challenge,[br]you know because as I say, by

0:29:38.960,0:29:42.449
you're at that stage you're already[br]in a real state of confusion and panic

0:29:42.449,0:29:47.185
and a bit more unsettled.

0:29:47.460,0:29:49.710
So to be asked the same story over again

0:29:50.063,0:29:53.199
can become very frustrating[br]and I think at times

0:29:53.199,0:29:56.860
you can become a bit sharper than maybe[br]that what you would normally be

0:29:56.860,0:30:00.900
but it's because you sort of,[br]you're fed up with the length of time

0:30:00.900,0:30:03.434
you have sitting there[br]probably waiting anyway

0:30:03.434,0:30:04.915
and you haven't seen anybody.

0:30:04.915,0:30:08.345
And then the next person comes in[br]to ask exactly the same question again

0:30:08.345,0:30:10.405
you think like[br]"This has moved on nowhere!

0:30:11.007,0:30:14.077
You know you haven't, you're asking me

0:30:14.077,0:30:18.214
what the person asked me two hours ago[br]but you're doing nothing different!"

0:30:18.214,0:30:21.348
but yes, I think it is a challenge,[br]you know with --

0:30:21.348,0:30:23.237
I think it's a challenge for anybody,

0:30:23.237,0:30:25.434
I think for somebody with a dementia[br]diagnosis,

0:30:25.434,0:30:27.540
yes, it is more of a challenge

0:30:27.540,0:30:29.734
S? Use clear language.

0:30:30.432,0:30:36.767
If you are going to perform[br]an intervention, talk to us beforehand

0:30:37.301,0:30:43.300
and explain each step in clear words[br]or with gestures

0:30:43.599,0:30:46.720
if our understanding is very limited.

0:30:47.347,0:30:48.880
Give us time, explaining the procedure[br]will help us to participate.

0:30:54.960,0:30:59.404
If I need reassurance, reassure me

0:31:00.302,0:31:03.788
S? I'm not saying you have to have[br]dementia to understand it

0:31:04.162,0:31:07.788
What I'm saying is[br]what I said to students, is:

0:31:08.244,0:31:13.342
"Take it easy at the beginning,[br]don't bombard them

0:31:13.342,0:31:20.480
with a rapid release of questions[br]and don't link questions together.

0:31:20.895,0:31:25.301
Make the subject, if it is driving,[br]something like that:

0:31:26.609,0:31:28.966
say: "Are you driving your car?"

0:31:30.146,0:31:31.546
Wait for the answer,

0:31:31.890,0:31:36.811
and then if they say: "no, I'm not"[br]then you can discuss it with them.

0:31:37.301,0:31:42.431
But I think if you go into something[br]you know, it only makes them:

0:31:42.926,0:31:47.415
"I can't interrupt this [br]but I don't agree with her".

0:31:47.945,0:31:53.218
So, very gently say, l thank you very much[br]for coming to talk to me

0:31:53.863,0:31:59.721
and I know very little about[br]how you're feeling at the moment.

0:32:00.340,0:32:05.596
So can you tell me how you felt[br]when you got your diagnosis?

0:32:05.946,0:32:07.360
What went before?

0:32:07.829,0:32:10.324
Did you think you had dementia?

0:32:10.608,0:32:16.351
And how you felt when you actually[br]were told you have dementia?"

0:32:17.320,0:32:20.440
It makes a difference.

0:32:20.440,0:32:29.057
S? Health and Social Care staff working[br]with any form of dementia

0:32:31.381,0:32:38.462
need to communicate clearly

0:32:40.022,0:32:46.800
with any individual[br]with any form of dementia.

0:32:48.010,0:32:54.257
They need to give clear instructions.

0:32:56.764,0:33:04.754
They need to ensure that people[br]with whom they are working

0:33:06.483,0:33:17.152
have a clear understanding[br]of what is being discussed.

0:33:19.944,0:33:28.208
And that they have made clear

0:33:29.998,0:33:40.274
exactly what is being shared[br]what is being said.

0:33:42.740,0:33:46.391
S? Maintain our confidentiality[br]and dignity.

0:33:47.098,0:33:51.544
Share information with us sensitively

0:33:51.795,0:33:57.186
and take into consideration[br]our confidentiality.

0:33:58.720,0:34:02.080
Privacy and dignity are important.

0:34:02.765,0:34:09.230
We may not want other patients/visitors[br]to know we have dementia

0:34:09.801,0:34:16.949
Yeah, within the hold of dementia,[br]I find myself falling apart,

0:34:17.359,0:34:27.510
I find myself unable to be[br]the person I was

0:34:29.478,0:34:39.417
to communicate the way[br]I should be able to communicate.

0:34:44.075,0:34:54.713
I lost my skills, I lost a lot of[br]what was,

0:34:59.698,0:35:06.736
what being me as a person was.

0:35:14.848,0:35:19.872
I was, I was lost.

0:35:23.750,0:35:28.867
(S?) Well, for myself or anybody,[br]they just treat us like hard of hearing (?)

0:35:28.979,0:35:33.238
But if I come in as a patient,[br]they don't know I've got dementia

0:35:33.238,0:35:35.258
unless I tell them I've got dementia

0:35:37.754,0:35:43.000
Don't, don't have me to have to say[br]that I've got dementia,

0:35:43.000,0:35:46.200
just treat me with courtesy of, I think

0:35:46.200,0:35:50.765
most, most sitting rooms in the hospital,[br]you know are like they're havoc.

0:35:51.567,0:35:54.800
If it comes to a thing, many such places[br]where I've been in,

0:35:54.800,0:35:58.223
I've turned around and says: "Look I'm[br]in the early stages of dementia,

0:35:58.223,0:36:00.306
could you give me a we bit of time, here?"

0:36:00.480,0:36:05.286
and just things get mixed up for --[br]I think if just,

0:36:05.859,0:36:11.081
if my name would come up[br]in that computer without me having to say

0:36:11.366,0:36:14.961
and 200 people or 100 people behind me[br]listening:

0:36:14.961,0:36:19.289
"He's got dementia listen, he's different[br].........(?)"

0:36:19.720,0:36:23.384
it's different just just come up[br]on the computer

0:36:23.384,0:36:25.512
they made a way they know[br]I've got dementia;

0:36:25.643,0:36:29.280
well we're just talking about a blue heart[br]or purple or something like that

0:36:29.735,0:36:32.000
and see what, where the attitude[br]changes,

0:36:32.000,0:36:35.720
that those changes have used are have used our

0:36:35.720,0:36:38.319
we th card or we IDE I've used to be

0:36:38.319,0:36:42.520
smart card not the smart card uh JN card[br]I've used the JN card

0:36:42.520,0:36:48.387
the difference those things make[br]and change people's attitude,

0:36:48.387,0:36:50.471
it's wonderful wonderful

0:36:50.920,0:36:52.925
S? Provide a support person.

0:36:53.786,0:37:00.898
Having a designated support person can[br]help to keep us calm and reassured.

0:37:01.544,0:37:04.960
One key person who supports us[br]through our stay makes a huge difference

0:37:09.079,0:37:11.312
to our Hospital experience

0:37:11.815,0:37:16.908
S? I had to go and get an operation[br]to take out a tumor on my leg

0:37:17.909,0:37:19.680
and it was quite difficult

0:37:19.680,0:37:24.903
because the specialist, even though[br]she was taking the the tumor out,

0:37:25.355,0:37:29.000
she was quite --[br]a lot of words that she was using

0:37:29.479,0:37:33.266
was very difficult for me to understand[br]because they were quite technical

0:37:33.962,0:37:40.711
and she then got a young nurse[br]to come in and help me because

0:37:40.711,0:37:46.119
she also knocked me out for six hours,[br]she put me asleep for 6 hours

0:37:46.119,0:37:47.040
where she was --

0:37:47.040,0:37:51.390
and a lot of things she was help,[br]the other lady was helping me,

0:37:51.390,0:37:52.680
she met me.

0:37:52.680,0:37:57.349
I was there for about a full day overnight

0:37:57.739,0:38:02.313
and that young lady was a major help[br]to me in the hospital

0:38:02.313,0:38:06.381
because she helped me even[br]write down my words,

0:38:06.677,0:38:11.067
she helped me even find places[br]and she also said:

0:38:11.440,0:38:15.111
"Even tomorrow when you go home[br]now that you've been operated,

0:38:15.111,0:38:16.736
this is what you do."

0:38:17.009,0:38:21.123
So even though the specialist[br]operated me well,

0:38:21.740,0:38:24.151
that lady was a massive helper.

0:38:24.151,0:38:28.695
She made the difference and I -- because[br]I spoke to the specialist

0:38:28.695,0:38:32.971
and you even used my card and I said[br]I know you're going to help me

0:38:33.310,0:38:39.131
but I've got Alzheimer's and I need[br]someone to talk to me, that give me advice

0:38:39.587,0:38:42.853
and because some of the things[br]you've said you're going to do

0:38:43.280,0:38:47.270
I haven't really understood fully[br]what's going to happen

0:38:47.270,0:38:49.150
or even how I help myself.

0:38:49.150,0:38:53.426
So, when that other lady came in,[br]she was massively helpful to me.

0:38:53.680,0:38:55.700
Possibly like other people with Dementia

0:38:55.700,0:38:58.787
I find that some things[br]are difficult to understand

0:38:59.003,0:39:01.736
if I haven't heard about things[br]for a while.

0:39:02.027,0:39:06.689
So that other lady was a bit[br]more explaining

0:39:07.110,0:39:11.116
and also helped me make notes[br]to write down:

0:39:11.116,0:39:14.065
a great understanding[br]of what was going to happen to me

0:39:14.065,0:39:17.871
and particularly how I dealt with myself[br]the next few days when I got home

0:39:18.141,0:39:21.015
S? Having that interface between[br]the consultant

0:39:21.408,0:39:30.301
and also the patient[br]with that specialist nurse was invaluable.

0:39:30.301,0:39:36.348
And that, I think, is something which[br]can be really helpful to other people.

0:39:36.680,0:39:47.229
S? One thing that I would insist on[br]would be that I had

0:39:50.155,0:40:08.585
someone with me that I trust,[br]someone with me that could be there,

0:40:10.037,0:40:18.538
to like, say, (?) I would either be taking[br]my own notes.

0:40:20.091,0:40:25.279
That's another thing I'd lost[br]my writing skills

0:40:25.279,0:40:27.520
I'd lost, I mean,

0:40:28.400,0:40:38.674
as well as losing my verbosity I had lost[br]my ability to write

0:40:40.984,0:40:44.640
and I have been practicing writing

0:40:46.163,0:40:49.151
just to get myself back off to speed,

0:40:50.012,0:40:56.288
to be able to communicate effectively

0:40:59.480,0:41:12.068
I've also been reading a lot[br]to try and ensure

0:41:12.068,0:41:18.153
that my communication is[br]as it should be,

0:41:18.809,0:41:23.371
as I consider it should be,

0:41:26.759,0:41:29.601
because I'm a hard taskmaster.

0:41:32.991,0:41:35.680
The following scene is based

0:41:35.680,0:41:37.839
on our real life

0:41:37.839,0:41:41.599
experiences of poor health care

0:41:41.599,0:41:42.830
interactions

0:41:42.830,0:42:02.379
[Music]

0:42:02.760,0:42:08.119
S? Without a clear introduction,[br]we may feel rushed or panicked,

0:42:08.822,0:42:15.545
unsure of what is happening, which may[br]unnecessarily increase our anxiety

0:42:16.319,0:42:19.805
and generate unexpected reactions.

0:42:21.311,0:42:29.312
Insufficient support with wayfinding[br]could leave us disorientated and confused,

0:42:29.964,0:42:34.070
ultimately reducing our [br]powers of concentration

0:42:34.070,0:42:36.611
for the following appointment.

0:42:37.627,0:42:46.326
Disorganized and chaotic clinical space[br]may be distracting or overwhelming for us,

0:42:46.326,0:42:50.787
reducing ability to focus and communicate

0:42:52.538,0:42:58.035
Not explaining procedures or interventions[br]clearly in advance

0:42:58.035,0:43:04.921
can cause us upset or distress,[br]especially as our dementia advances.

0:43:06.665,0:43:14.948
Not explaining next steps in advance[br]increases our anxiety and confusion.

0:43:20.760,0:43:23.753
S? Hazel and David, is that right?

0:43:23.753,0:43:24.580
S? Yeah.

0:43:24.580,0:43:27.780
S? I'm Dr ..... (?) [background voices]

0:43:27.780,0:43:33.487
S? Without a clear and full introduction,[br]we may not realize

0:43:33.760,0:43:35.934
the purpose of the appointment.

0:43:39.213,0:43:41.795
S? No I'm not I'm not really[br]seeing anything,

0:43:41.795,0:43:43.640
there there's no results back just yet

0:43:45.245,0:43:50.625
S? Poor positioning can hinder[br]effective communication with us

0:43:50.810,0:43:56.194
(Indistinct background voices)[br]... Not to good we'll maybe ...

0:43:56.289,0:44:04.383
S? Asking us repetitive questions[br]without context can make us feel

0:44:04.383,0:44:07.234
like we are being tested.

0:44:09.112,0:44:13.698
Speaking to a carer instead of[br]directly to us

0:44:14.461,0:44:18.079
shows a presumption[br]about our capacity.

0:44:18.969,0:44:23.977
S? The following scene is based on[br]our real life experiences

0:44:23.977,0:44:27.972
of <b>positive</b> healthcare interactions

0:44:28.010,0:44:40.023
[Indistinct voices]

0:44:40.368,0:45:03.161
[Music]

0:45:03.300,0:45:05.460
S? The consultant comes[br]to see about things (?)

0:45:05.460,0:45:09.680
And I'll fix this across the H[br]S? yeah S? all right? (?)

0:45:12.454,0:45:15.359
there we go like the wait the

0:45:15.359,0:45:16.960
consultant will be right in through the

0:45:16.960,0:45:21.079
door thank you

0:45:28.040,0:45:30.400
how are you I'm Dr sville I'm one of the

0:45:30.400,0:45:33.119
Consultants it's nice to meet you it's

0:45:33.119,0:45:35.240
Davey is that right Dave yeah Davey I I

0:45:35.240,0:45:37.440
haven't met you before um I understand

0:45:37.440,0:45:39.040
that you're you're here to talk about

0:45:39.040,0:45:40.640
some results that's right is that

0:45:40.640,0:45:43.599
correct be okay yeah sure I I haven't

0:45:43.599,0:45:46.160
been to doing too bad been keeping busy

0:45:46.160,0:45:47.559
and very

0:45:47.559,0:45:52.079
active so I do and uh yeah just keep

0:45:52.079,0:45:54.359
keep busy okay okay how have you been

0:45:54.359,0:45:57.119
sleeping recently sleep's been a bit on

0:45:57.119,0:46:01.200
off um but uh I always get caught up

0:46:01.200,0:46:03.160
sometimes away quite early right but uh

0:46:03.160,0:46:05.760
I can get caught up the next night okay

0:46:05.760,0:46:07.800
and what time would you go to bed at

0:46:07.800,0:46:11.440
roughly normally try half time 11:00 um

0:46:11.440,0:46:13.839
probably a bit overeen of anything right

0:46:13.839,0:46:16.240
I started sweet stuff I Can't Get Enough

0:46:16.240,0:46:19.200
at the whatever's uh going on you know

0:46:19.200,0:46:21.960
right okay and then just about some of

0:46:21.960,0:46:24.760
your medications um has anything changed

0:46:24.760,0:46:27.440
recently at all no they've kept it

0:46:27.440,0:46:30.280
they kept the medication as it is right

0:46:30.280,0:46:32.000
we can maybe spend a bit more time

0:46:32.000,0:46:34.240
looking at well really not not too bad

0:46:34.240,0:46:36.599
just how how how do you see things

0:46:36.599,0:46:40.200
progressing for for myself okay okay so

0:46:40.200,0:46:42.680
if you've got that Rapport it makes a

0:46:42.680,0:46:45.920
real difference and show appreciation

0:46:45.920,0:46:49.760
cuz the staff do an amazing thing and in

0:46:49.760,0:46:52.520
very difficult environment and I have to

0:46:52.520,0:46:55.760
say thank you to the nursing staff and

0:46:55.760,0:46:58.440
to the medics who do take such good care

0:46:58.440,0:46:59.319
of

0:46:59.319,0:47:02.400
us thank you for staying with us

0:47:02.400,0:47:04.200
throughout this

0:47:04.200,0:47:07.079
documentary we hope it has provided you

0:47:07.079,0:47:10.119
with a deeper understanding of what it

0:47:10.119,0:47:13.559
is like to live with dementia and has

0:47:13.559,0:47:17.160
offered practical tips that you can now

0:47:17.160,0:47:18.680
put into

0:47:18.680,0:47:22.720
practice finally a big thank you from

0:47:22.720,0:47:25.880
all the members at dementa ni for the

0:47:25.880,0:47:27.559
work that you do

0:47:27.559,0:47:30.880
that has a positive impact on the daily

0:47:30.880,0:47:33.880
lives of real people like

0:47:33.880,0:47:37.160
us matter have to assume we have

0:47:37.160,0:47:40.480
capacity mhm is that the size of my

0:47:40.480,0:47:44.359
bladder the size of my

0:47:50.160,0:47:54.200
nose those words my feet went from

0:47:54.200,0:47:58.839
beneath me could not believe what I

0:47:59.180,0:48:00.800
[Music]

0:48:00.800,0:48:03.359
I I

0:48:03.359,0:48:06.720
saw I

0:48:09.559,0:48:15.400
give it's a slippy R but I keep my feet

0:48:15.400,0:48:19.359
bled I have the strength to hold the C

0:48:19.359,0:48:21.559
I've been

0:48:21.559,0:48:25.800
handed If I Stumble if my feet fall or

0:48:25.800,0:48:27.680
if I need

0:48:27.680,0:48:31.880
assistance I know the journey is long

0:48:31.880,0:48:36.040
but it's so wor

0:48:36.040,0:48:39.880
that my voice is mind I don't need

0:48:39.880,0:48:43.800
someone to say what's on my mind though

0:48:43.800,0:48:47.480
the love I have to help me is the best

0:48:47.480,0:48:51.400
that you could find and I worry for my

0:48:51.400,0:48:55.559
loved ones cuz the future is so wonder I

0:48:55.559,0:48:58.720
stay strong

0:49:01.520,0:49:02.200
it's

0:49:02.200,0:49:06.240
ay but I keep

0:49:06.400,0:49:10.359
my I have the strength to hold the C

0:49:10.359,0:49:12.559
I've been

0:49:12.559,0:49:17.400
handed If I Stumble my feet fall or if I

0:49:17.400,0:49:21.480
need some assistance I know the journey

0:49:21.480,0:49:23.040
long

0:49:23.040,0:49:28.000
but it's the wor that distance

0:49:28.000,0:49:33.079
[Music]

0:49:35.880,0:49:39.559
[Music]

0:49:39.559,0:49:41.200
I found my

0:49:41.200,0:49:44.240
place surrounded by

0:49:44.240,0:49:49.400
faces who understand

0:49:50.040,0:49:53.200
me our worries and

0:49:53.200,0:49:58.640
fears so disappear after

0:49:59.140,0:50:02.079
[Music]

0:50:02.079,0:50:07.559
Aver and a warm cup of tea