WEBVTT 00:00:04.560 --> 00:00:09.960 ♪I won't lie I was terrified when the doctor said those words♪ 00:00:09.960 --> 00:00:16.169 ♪My feet went from beneath me could not believe what I just heard♪ 00:00:16.169 --> 00:00:22.005 ♪If I judged my condition from what I saw on television♪ 00:00:22.005 --> 00:00:25.560 ♪I'd give up♪ NOTE Paragraph 00:00:28.345 --> 00:00:35.908 S1 944 ,000 people are estimated to be currently living with dementia in the UK 00:00:35.908 --> 00:00:40.959 [Music] 00:00:41.699 --> 00:00:48.040 Dementia killed almost double the number of women than men in 2020 00:00:48.040 --> 00:00:53.385 [Music] 00:00:53.385 --> 00:00:59.762 Dementia has been the leading cause of death in women since 2011 00:00:59.790 --> 00:01:04.640 [Music] 00:01:04.640 --> 00:01:09.370 9% of people over 65 have dementia. 00:01:09.370 --> 00:01:18.099 [Music] 00:01:18.449 --> 00:01:21.579 Dementia will impact 50% of us 00:01:22.079 --> 00:01:27.173 either through a personal diagnosis or by caring for someone who has it. 00:01:27.173 --> 00:01:35.480 [Music] 00:01:35.600 --> 00:01:42.705 1.6 million people will be living with dementia in the UK by 2040 00:01:43.074 --> 00:01:48.513 [Music] 00:01:48.513 --> 00:01:56.290 Dementia is the most feared health condition by 60% of people over 65. 00:01:56.434 --> 00:02:04.449 [Music] 00:02:05.880 --> 00:02:12.805 Dementia care costs in Northern Ireland are projected to increase 192% 00:02:12.805 --> 00:02:19.994 from 800 million in 2019 to 2.4 billion in 2040. NOTE Paragraph 00:02:30.390 --> 00:02:35.329 Wayfinding in unfamiliar places can be more challenging 00:02:35.329 --> 00:02:38.091 for people living with dementia. 00:02:40.910 --> 00:02:46.483 Environment may affect people living with dementia more than most. 00:02:49.128 --> 00:02:54.640 Noisy and chaotic spaces can feel disorientating and overwhelming, 00:02:54.640 --> 00:02:59.405 may increase anxiety or frustration, causing changes in behaviour. 00:03:02.110 --> 00:03:08.360 Everyday life for people living with dementia can be exhausting 00:03:09.126 --> 00:03:11.040 though it may not be obvious to you. 00:03:11.702 --> 00:03:18.074 It takes longer for people living with dementia to process information. 00:03:18.074 --> 00:03:24.469 Our brains have to work harder to filter out external stimuli 00:03:24.911 --> 00:03:30.791 often leaving us feeling depleted, exhausted and spent. 00:03:31.400 --> 00:03:35.359 This makes our symptoms of dementia more evident. 00:03:36.290 --> 00:03:51.778 [Music] NOTE Paragraph 00:03:51.778 --> 00:04:01.381 74,000 800 people are estimated to be living with young onset dementia 00:04:01.547 --> 00:04:04.281 in the UK and Ireland 00:04:04.530 --> 00:04:11.663 [Music] 00:04:11.663 --> 00:04:19.503 Young onset dementia is when symptoms of dementia start before the age of 65 00:04:19.740 --> 00:05:05.059 [Music] NOTE Paragraph 00:05:06.880 --> 00:05:13.969 Dementia NI members formed a working group in 2022 00:05:14.749 --> 00:05:20.391 that included eight individuals living with dementia like me, 00:05:21.132 --> 00:05:26.791 supported by four staff members working collaboratively together: 00:05:27.556 --> 00:05:29.562 one from dementia NI 00:05:30.257 --> 00:05:37.150 and three from the Southern and Southeast Health and Social Care Trusts. 00:05:38.778 --> 00:05:44.770 The members of dementia NI are always looking for opportunities to engage 00:05:44.770 --> 00:05:50.117 with hospital and social care staff to describe what it's like 00:05:50.117 --> 00:05:57.125 to live with dementia and to share with them our challenges as well as ways 00:05:57.125 --> 00:06:03.790 we can best be supported in both clinical and hospital environments. NOTE Paragraph 00:06:04.240 --> 00:06:12.232 However, speaking to every trust member in person is an impossible task. 00:06:12.914 --> 00:06:18.114 So we decided to create a documentary to help us interact 00:06:18.611 --> 00:06:25.240 with members of the Health and Social Care services to help bridge this gap. 00:06:26.747 --> 00:06:33.227 Over the course of 22 months we met regularly to decide the content 00:06:33.426 --> 00:06:40.194 of this film, sharing our own personal experiences across the spectrum, 00:06:41.180 --> 00:06:45.348 both positive and challenging experiences. 00:06:46.499 --> 00:06:52.215 We thought it would be beneficial to provide staff with 10 top tips 00:06:52.743 --> 00:06:57.303 for supporting people like us living with dementia. 00:06:58.004 --> 00:07:03.546 We believe these these practices can be easily implemented 00:07:04.120 --> 00:07:08.440 without adding an extra burden to staff 00:07:08.440 --> 00:07:12.829 and will lead to an improved staff-patient interaction 00:07:13.626 --> 00:07:19.667 and in the long run will save time; Many people have commented: 00:07:20.143 --> 00:07:25.149 "What is good for people living with dementia is good for everyone." 00:07:25.857 --> 00:07:33.079 And we the members of dementia NI are sure you will find this to be so too. 00:07:36.759 --> 00:07:41.809 We know you will find the following individual experiences engaging 00:07:42.279 --> 00:07:45.188 even if somewhat emotional at times, 00:07:45.511 --> 00:07:51.512 and that you will be able to put some of the practical tips into action NOTE Paragraph 00:07:51.646 --> 00:07:55.486 [Introducing members of Dementia NI -- the producers of this training resource -- 00:07:55.486 --> 00:07:58.523 and their experiences within health and social care settings] NOTE Paragraph 00:07:58.900 --> 00:08:01.749 S2 I'm Davie Michael McElhinney from County Fermanagh 00:08:01.749 --> 00:08:06.622 I was diagnosed with frontal temporal dementia 7 years ago 00:08:07.152 --> 00:08:09.280 I was aged 54. NOTE Paragraph 00:08:09.885 --> 00:08:13.440 S3 My name is Martin Murtagh 00:08:14.288 --> 00:08:17.137 My dementia is Alzheimer's dementia NOTE Paragraph 00:08:17.427 --> 00:08:21.240 S4 So my name is Peter Alexander I was born in England, Twickenham, 00:08:21.240 --> 00:08:24.912 so the good old rugby place. NOTE Paragraph 00:08:24.912 --> 00:08:30.980 S5 My name is Gerard Doran, I was diagnosed with dementia when I was 61. NOTE Paragraph 00:08:31.120 --> 00:08:33.549 S6 Yes, I'm Christopher Higgins 00:08:33.549 --> 00:08:37.951 and my dementia was discovered just two years ago. NOTE Paragraph 00:08:37.951 --> 00:08:43.013 S7 Yes, my name's Allison, Allison Bachelor, I live in Dundonald 00:08:43.013 --> 00:08:49.091 and was diagnosed with Alzheimer's in April 2017 NOTE Paragraph 00:08:49.240 --> 00:08:53.399 S8 I'm a newly diagnosed person with dementia. 00:08:54.280 --> 00:08:59.868 My past knowledge of dementia was that I was a social worker in hospital 00:09:00.200 --> 00:09:05.409 S9 Hi, my name is Tom, Tom Heatly, and 00:09:06.819 --> 00:09:13.240 I have dementia, I've been diagnosed 00:09:13.240 --> 00:09:17.519 with dementia with Lewy bodies 00:09:19.259 --> 00:09:26.188 that was back about just over a year now. NOTE Paragraph 00:09:26.640 --> 00:09:30.146 Treat us with common courtesy. 00:09:30.146 --> 00:09:35.549 S8 Treat us with respect, as valued, capable adults 00:09:36.005 --> 00:09:41.433 Be aware of your facial expression, tone of voice 00:09:41.433 --> 00:09:45.472 and your non-verbal communication 00:09:45.839 --> 00:09:52.989 And when the students came, they said: "Oh I see here this person has dementia, 00:09:53.443 --> 00:09:56.263 I don't know how to speak to dementia." 00:09:56.994 --> 00:09:59.040 And I think that is the problem. 00:09:59.040 --> 00:10:01.560 They think they're speaking to the dementia. 00:10:02.297 --> 00:10:07.754 But I always said to them: "So what if they have dementia? 00:10:07.754 --> 00:10:09.854 speak to the person first. 00:10:10.120 --> 00:10:18.320 You will hear a little bit when they reply about de the way they are affected, 00:10:18.793 --> 00:10:23.665 but just keep speaking to the person behind the dementia 00:10:23.861 --> 00:10:27.936 because it's the person you want to talk to. NOTE Paragraph 00:10:29.440 --> 00:10:34.680 S9 Basically you talk about valuing an individual. 00:10:35.809 --> 00:10:43.817 In all those years that I have been a trainer in the trust, 00:10:46.672 --> 00:11:00.944 basic values are the primary important factor NOTE Paragraph 00:11:01.659 --> 00:11:04.440 S4 What I would say, yes: 00:11:05.183 --> 00:11:11.501 if I was to write a book from a person who has dementia, 00:11:13.344 --> 00:11:17.632 it would be to say I'm hurting inside too. 00:11:18.494 --> 00:11:21.675 I might not be able to express it, 00:11:22.600 --> 00:11:26.139 but I'm still the same person as I was when I was younger. 00:11:27.606 --> 00:11:29.519 I am still that today, 00:11:30.399 --> 00:11:35.032 it's just that the person I am is getting locked away more and more inside me. 00:11:35.813 --> 00:11:37.983 So don't treat me any differently. 00:11:38.720 --> 00:11:40.624 I'm still the same person as I was 00:11:42.543 --> 00:11:45.839 even though you might have some preconceived ideas 00:11:46.517 --> 00:11:51.549 that because I got dementia, I'm an incontinent old person. 00:11:51.880 --> 00:11:55.882 but I'm not: I was diagnosed at the age of 49 00:11:55.882 --> 00:12:00.320 and at that time I was told that I shouldn't work anymore 00:12:00.734 --> 00:12:05.696 and that I shouldn't drive anymore because of my judgment being impaired. NOTE Paragraph 00:12:07.658 --> 00:12:09.000 S8 Give us time 00:12:09.985 --> 00:12:13.359 We need more time to process than you. 00:12:13.764 --> 00:12:18.199 Allow us to respond before you move on. 00:12:18.901 --> 00:12:21.674 Don't bombard us with questions. 00:12:21.972 --> 00:12:28.381 S? We're just normal human beings with a good mind 00:12:28.381 --> 00:12:30.120 and just normal people. 00:12:30.935 --> 00:12:40.933 The dementia does bring up different problems, 00:12:41.416 --> 00:12:47.148 you know, such a speech: now my speech, while I'm sitting here talking to you, 00:12:47.755 --> 00:12:52.750 there's -- words just disappear out of my vocabulary 00:12:53.445 --> 00:12:57.183 and that's why you could see me struggling there a couple of wee bits 00:12:57.760 --> 00:13:01.000 that's because a normal conversational word 00:13:01.926 --> 00:13:07.953 whenever it disappears I have to fish for another word that will fit 00:13:07.953 --> 00:13:09.440 in the slot in this place, 00:13:10.298 --> 00:13:13.019 but your mind's going around like a washing machine 00:13:13.019 --> 00:13:16.467 and it can't pick the words out sometimes. NOTE Paragraph 00:13:17.051 --> 00:13:21.279 S? Yeah it still sticks with me that that day I felt very rushed 00:13:21.279 --> 00:13:24.959 and uh it was very blunt. 00:13:24.959 --> 00:13:30.209 There's no easy way to deliver bad news but it was very very blunt I thought 00:13:30.639 --> 00:13:34.800 and we left with no information at all that Friday afternoon. 00:13:34.800 --> 00:13:38.944 We went out for the weekend and with absolutely nothing. 00:13:38.944 --> 00:13:42.076 I thought, I thought with only weeks to live after that, you know. 00:13:42.988 --> 00:13:45.255 So I did and I think more time would have helped 00:13:45.255 --> 00:13:49.176 and maybe a bit more compassion with the, from the consultant. NOTE Paragraph 00:13:50.549 --> 00:13:53.524 S8 Don't make assumptions about us. 00:13:54.083 --> 00:13:58.466 Don't presume you know what we want, feel or need 00:13:58.914 --> 00:14:03.341 or what we might be able to understand or decide. 00:14:03.926 --> 00:14:06.625 Discuss us with us directly. 00:14:07.834 --> 00:14:13.909 Give our loved ones the "This is me" person-centered document 00:14:13.909 --> 00:14:17.134 to help you care for me effectively. NOTE Paragraph 00:14:18.657 --> 00:14:22.191 S? Yeah I had gone to a local ANE (?) Department. 00:14:22.926 --> 00:14:25.011 This would be a few years ago now. 00:14:25.011 --> 00:14:30.920 And I had said to the nurse who had after gone through from triage, you know, 00:14:30.920 --> 00:14:33.680 been called into the back area, you know, 00:14:33.680 --> 00:14:36.264 to be waiting to be seen by a doctor and to have 00:14:36.264 --> 00:14:38.547 some sort of bloods or whatever done, 00:14:38.547 --> 00:14:42.480 and I had said to her that I had dementia diagnosis 00:14:42.830 --> 00:14:49.323 and she instantly dismissed it and told me "Just tell the doctor" and walked away. 00:14:50.024 --> 00:14:53.160 And I have to say that put me into a bit of a panic mode 00:14:53.160 --> 00:14:55.816 because I sort of thought, I didn't feel safe then, 00:14:56.059 --> 00:14:59.081 I sort of thought that she should have taken a wee bit of time, 00:14:59.081 --> 00:15:03.260 even just by saying: "Okay we've taken note of that 00:15:03.260 --> 00:15:07.266 but if you need us to go to the toilet or if you need any help with anything, 00:15:07.266 --> 00:15:09.176 you know, just give one of us a shout." 00:15:09.466 --> 00:15:12.553 But I sort of felt it wasn't taken seriously, 00:15:12.989 --> 00:15:17.460 that it, and I thought it was something, that she did need to know, you know, 00:15:17.460 --> 00:15:20.668 I thought it was something that she had needed to take note of 00:15:20.668 --> 00:15:26.505 and to be aware of and, you know, as I say, I just sort of felt 00:15:26.505 --> 00:15:30.769 a bit more unsafe than if had have been given a wee bit of time 00:15:30.769 --> 00:15:33.170 cuz I sort of thought if I need to go to the toilet 00:15:33.170 --> 00:15:36.160 or I need, you know, who do I say to, I didn't feel after that 00:15:36.160 --> 00:15:38.737 I could say to any other nurse who came in to to me: 00:15:39.069 --> 00:15:41.504 "By the way, I have a dementia diagnosis" 00:15:41.800 --> 00:15:43.865 because of the way she had treated me. NOTE Paragraph 00:15:45.120 --> 00:15:48.741 S? I learned more about dementia 00:15:51.194 --> 00:16:02.280 I worked with people who were true professionals, 00:16:04.907 --> 00:16:11.465 who were truly impressive in their approaches 00:16:14.613 --> 00:16:30.652 and who helped me so much to identify what I could do 00:16:31.305 --> 00:16:36.725 as opposed to all the all these things that I couldn't do. NOTE Paragraph 00:16:39.040 --> 00:16:42.399 S? Notes help us to remember. 00:16:43.234 --> 00:16:48.137 Provide written information using jargon-free language 00:16:48.137 --> 00:16:50.668 to help us to understand. 00:16:51.159 --> 00:16:56.857 Help us to keep notes so that we can keep track of what is happening. NOTE Paragraph 00:16:57.560 --> 00:17:00.680 S? For example when I attended a hospital, 00:17:00.680 --> 00:17:08.234 I needed to meet an individual staff member who was fairly aware of dementia 00:17:08.611 --> 00:17:10.574 and helped me support 00:17:11.155 --> 00:17:16.707 on a regular basis throughout my stay especially with regards to 00:17:16.707 --> 00:17:20.749 explaining and noting the key aspects of my appointment 00:17:20.749 --> 00:17:24.977 and how to cope well in the ward itself NOTE Paragraph 00:17:29.000 --> 00:17:33.160 S? So if you have someone who has dementia 00:17:39.276 --> 00:17:52.707 ensure that you are making clear to the individual what is being discussed, 00:17:54.269 --> 00:17:58.546 what is being agreed, 00:18:00.520 --> 00:18:12.665 and that there is someone with them that can either take notes for them 00:18:14.836 --> 00:18:23.194 if they do not have the ability to make clear 00:18:28.480 --> 00:18:31.777 any decisions that are taken, 00:18:34.841 --> 00:18:47.819 to make clear anything that has been, that has been discussed NOTE Paragraph 00:18:49.320 --> 00:18:54.577 S? Environment may affect us more than you 00:18:55.713 --> 00:19:01.422 The environment we are in affects us more than you. 00:19:02.189 --> 00:19:07.525 Provide a calming environment and opportunities to engage 00:19:07.525 --> 00:19:10.818 in activities that mean something to us. 00:19:12.824 --> 00:19:20.594 Use person_centered tools like "This is me" to find out more about me, 00:19:20.594 --> 00:19:24.590 to tailor activities to meet my needs, 00:19:25.520 --> 00:19:30.400 specifically designed quiet places and murals can help. NOTE Paragraph 00:19:31.535 --> 00:19:35.907 S? There are also important issues regarding how the building itself looks. 00:19:36.504 --> 00:19:43.673 unfamiliar surroundings, noises and busy unclear spaces can be challenging 00:19:44.155 --> 00:19:47.018 and lead the agitation and confusion. 00:19:47.543 --> 00:19:51.162 it's important for a dementia person to have an individual space 00:19:51.532 --> 00:19:53.482 away from others, I think. 00:19:54.143 --> 00:19:57.781 Navigation and way finding is also important 00:19:57.781 --> 00:20:00.909 and it is helpful to have appropriate signs. 00:20:01.389 --> 00:20:04.423 Ideally they should be slightly large, 00:20:04.423 --> 00:20:10.150 with clear words placed at face level and not too high 00:20:10.706 --> 00:20:14.098 Murals and painting can also be helpful, 00:20:14.346 --> 00:20:18.983 ideally colors that aren't too dark, such as red and green 00:20:20.320 --> 00:20:27.423 I recently found it difficult to find tight uh, toilet near my bed 00:20:27.723 --> 00:20:32.921 until the Staff member helped me find it as it didn't have a sign. NOTE Paragraph 00:20:32.921 --> 00:20:40.200 S? But the biggest thing would be disorientation and confusion, you know, 00:20:40.200 --> 00:20:43.945 of coming out of a room and knowing which way to turn and what way to go 00:20:43.945 --> 00:20:48.431 and that's why for me signage is vital, you know, in all situations 00:20:48.431 --> 00:20:50.934 and if there's good signage I'm much more confident 00:20:50.934 --> 00:20:53.320 and I can live much more independently 00:20:53.320 --> 00:20:55.440 but I would describe my head 00:20:55.440 --> 00:20:57.280 as like a washing machine you know of so 00:20:57.280 --> 00:20:59.320 much G through and try 00:20:59.320 --> 00:21:03.400 to process things you know that would be 00:21:03.400 --> 00:21:04.760 the biggest 00:21:04.760 --> 00:21:07.600 challenge it's it's even more confusing 00:21:07.600 --> 00:21:09.280 cuz you're already not well you know 00:21:09.280 --> 00:21:10.880 you're already worried about what's 00:21:10.880 --> 00:21:13.679 going on why you're there uh and the 00:21:13.679 --> 00:21:16.679 noise and you know yourself anybody is 00:21:16.679 --> 00:21:18.640 sort of in an particularly in an NA 00:21:18.640 --> 00:21:20.360 Department there's so much banging and 00:21:20.360 --> 00:21:23.200 cluttering and there's noise going on 00:21:23.200 --> 00:21:24.799 either side of you in front of you 00:21:24.799 --> 00:21:26.600 behind you you know there's so many 00:21:26.600 --> 00:21:29.840 conversations going on uh you know quite 00:21:29.840 --> 00:21:32.000 often you're planted quite close to the 00:21:32.000 --> 00:21:34.080 nursery station because there's no 00:21:34.080 --> 00:21:36.600 cubicles um you know and there's all the 00:21:36.600 --> 00:21:38.320 noise and all the movements sort going 00:21:38.320 --> 00:21:41.240 on that and it it can become very very 00:21:41.240 --> 00:21:44.880 confusing and uh you know it's a hard 00:21:44.880 --> 00:21:46.919 thing to process any information and 00:21:46.919 --> 00:21:49.840 then when they come to speak to you you 00:21:49.840 --> 00:21:51.559 know there's so much noise going on 00:21:51.559 --> 00:21:54.159 there's so much backgr noise 00:21:54.159 --> 00:21:56.760 and conversations going on around you 00:21:56.760 --> 00:21:59.000 that is hard to process what actually 00:21:59.000 --> 00:22:01.840 been said to you whereas again a very 00:22:01.840 --> 00:22:04.000 simple thing would be to have somewhere 00:22:04.000 --> 00:22:07.080 that once they know you have a dementia 00:22:07.080 --> 00:22:09.679 diagnosis and to ask the person you know 00:22:09.679 --> 00:22:12.360 what can we do to help and I think most 00:22:12.360 --> 00:22:14.120 people would say if I could have a quiet 00:22:14.120 --> 00:22:16.200 room to have whenever the doctor's 00:22:16.200 --> 00:22:20.559 talking to me I think that would make a 00:22:20.559 --> 00:22:22.240 big difference you know you would sort 00:22:22.240 --> 00:22:24.480 of know that during that important time 00:22:24.480 --> 00:22:25.960 when you're meant to be able to take 00:22:25.960 --> 00:22:29.080 information in you know that they would 00:22:29.080 --> 00:22:31.120 take you somewhere that that could 00:22:31.120 --> 00:22:35.520 happen easier than it does in the busy 00:22:35.520 --> 00:22:36.720 any 00:22:36.720 --> 00:22:39.520 Department it was again with I mention 00:22:39.520 --> 00:22:42.400 in hospitals it was a new hospital 00:22:42.400 --> 00:22:43.960 absolutely 00:22:43.960 --> 00:22:46.440 beautiful like an into a very Swanky 00:22:46.440 --> 00:22:48.400 hotel but you go in there you're not 00:22:48.400 --> 00:22:51.320 coming back out there is no signage 00:22:51.320 --> 00:22:54.960 anywhere and the every Corridor looks 00:22:54.960 --> 00:22:57.760 exactly the same and you sort of have to 00:22:57.760 --> 00:22:59.960 go up in the left and go long a bit then 00:22:59.960 --> 00:23:01.880 go down and a left and go long a bit and 00:23:01.880 --> 00:23:05.320 then come back up again you know um 00:23:05.320 --> 00:23:08.360 because of the waya they intertwined and 00:23:08.360 --> 00:23:09.960 as I say you can out have a lift but 00:23:09.960 --> 00:23:11.840 there's no signage to tell you to turn 00:23:11.840 --> 00:23:14.760 left turn right or what way to go you 00:23:14.760 --> 00:23:18.600 know and that was a horrible 00:23:18.600 --> 00:23:21.279 experience well I have had the 00:23:21.279 --> 00:23:26.320 experience of um going into Hospital 00:23:26.320 --> 00:23:28.840 under an am with an ambulance J in the 00:23:28.840 --> 00:23:30.080 times of 00:23:30.080 --> 00:23:32.520 covid 00:23:32.520 --> 00:23:36.200 and the ambulance team were fantastic 00:23:36.200 --> 00:23:39.039 cuz they were aware of my challenges 00:23:39.039 --> 00:23:43.600 they thought I had a triple A um but it 00:23:43.600 --> 00:23:46.240 actually turned out to be kidney stones 00:23:46.240 --> 00:23:49.120 but when they took me into the hospital 00:23:49.120 --> 00:23:51.480 rather than just sitting 00:23:51.480 --> 00:23:55.120 there in the general area they 00:23:55.120 --> 00:23:58.000 accelerated my Passage through to being 00:23:58.000 --> 00:24:01.159 on a a bed in one of the cubicles 00:24:01.159 --> 00:24:02.880 because they knew that with my 00:24:02.880 --> 00:24:07.039 behavioral variant of of of of of the 00:24:07.039 --> 00:24:09.880 dementia of the the FTD the frontal 00:24:09.880 --> 00:24:13.520 temporal dementia that my filters had 00:24:13.520 --> 00:24:16.919 disappeared I would say things as I felt 00:24:16.919 --> 00:24:20.840 about them I would swear which I 00:24:20.840 --> 00:24:23.559 wouldn't have done in the past but 00:24:23.559 --> 00:24:26.320 frustration the feeling of not being 00:24:26.320 --> 00:24:29.480 able to express yourself as as I once 00:24:29.480 --> 00:24:33.080 did these things lead to just filterless 00:24:33.080 --> 00:24:35.799 behaviors and it's not that you're being 00:24:35.799 --> 00:24:39.080 unkind or nasty to the staff it's just 00:24:39.080 --> 00:24:41.880 how things come across so it's important 00:24:41.880 --> 00:24:44.480 that the staff in that environment build 00:24:44.480 --> 00:24:48.240 a rapport with the patient build the 00:24:48.240 --> 00:24:51.360 trust and the confidence where they can 00:24:51.360 --> 00:24:53.600 exchange freely and 00:24:53.600 --> 00:24:57.320 happily and the second time I um 00:24:57.320 --> 00:25:00.360 developed culat my eye and I went to the 00:25:00.360 --> 00:25:01.960 ation first of all it was late on in the 00:25:01.960 --> 00:25:05.120 evening and uh he he rang the casualty 00:25:05.120 --> 00:25:07.919 to say expect me so they were expecting 00:25:07.919 --> 00:25:09.279 it and again they knew at that time I 00:25:09.279 --> 00:25:11.919 was living with the Mana so the uh 00:25:11.919 --> 00:25:14.360 consultant actually saw me and the the 00:25:14.360 --> 00:25:16.360 emergency department was very busy so 00:25:16.360 --> 00:25:18.000 she actually took me to a very quiet 00:25:18.000 --> 00:25:20.440 place away from the the emergency 00:25:20.440 --> 00:25:23.399 department and they did all all the had 00:25:23.399 --> 00:25:25.000 to do at that time 00:25:25.000 --> 00:25:27.559 and her care and even the nursing care 00:25:27.559 --> 00:25:30.720 was was was was first class at that time 00:25:30.720 --> 00:25:33.440 with really noise and and a lot of 00:25:33.440 --> 00:25:36.000 people yeah I find people's faces just 00:25:36.000 --> 00:25:39.120 blur and the noise just it really 00:25:39.120 --> 00:25:41.320 scrambles my brain I can't think or 00:25:41.320 --> 00:25:43.520 focus on anything with with noise a 00:25:43.520 --> 00:25:46.240 quiet place would be ideal yeah 00:25:46.240 --> 00:25:50.919 yeah assume we have capacity don't make 00:25:50.919 --> 00:25:54.240 assumptions about our level of capacity 00:25:54.240 --> 00:25:57.799 or ability to engage in our care 00:25:57.799 --> 00:26:00.159 planning and decision 00:26:00.159 --> 00:26:03.559 making I may not have capacity to make 00:26:03.559 --> 00:26:06.640 every decision but there will be some 00:26:06.640 --> 00:26:11.960 decisions I can still make and want to 00:26:11.960 --> 00:26:16.399 make don't speak to our family members 00:26:16.399 --> 00:26:21.200 and ignore us speak directly to us first 00:26:21.200 --> 00:26:24.399 and allow us to defer to our support 00:26:24.399 --> 00:26:28.760 person if we need to 00:26:28.760 --> 00:26:31.880 ask me what you 00:26:31.880 --> 00:26:36.640 need what sorry I would want them to ask 00:26:36.640 --> 00:26:38.520 me what I needed or wanted not to 00:26:38.520 --> 00:26:40.440 presume they know because they might 00:26:40.440 --> 00:26:43.480 have had somebody in earlier that day or 00:26:43.480 --> 00:26:45.399 the day before or the week before with 00:26:45.399 --> 00:26:47.080 the dementia diagnosis he needs 00:26:47.080 --> 00:26:49.679 something different to what I would need 00:26:49.679 --> 00:26:52.000 you know so I would always say you 00:26:52.000 --> 00:26:55.360 know treat that person as an individual 00:26:55.360 --> 00:26:57.840 and find out what you can do that will 00:26:57.840 --> 00:27:01.279 make them them more comfortable feel 00:27:01.279 --> 00:27:05.200 safer and and in the turn that will ease 00:27:05.200 --> 00:27:07.640 your workload because if the person with 00:27:07.640 --> 00:27:10.120 the dementia diagnosis feels relaxed and 00:27:10.120 --> 00:27:14.640 feels at ease they're less likely to be 00:27:14.640 --> 00:27:18.520 given hustle or be kicking off about 00:27:18.520 --> 00:27:21.320 something I'm a sitting in the outside 00:27:21.320 --> 00:27:24.200 wetting room when she asked me could it 00:27:24.200 --> 00:27:26.080 come into the room and I SP to you if 00:27:26.080 --> 00:27:28.000 you want your son to come in you can 00:27:28.000 --> 00:27:29.559 come and I says no I'll just going 00:27:29.559 --> 00:27:32.120 myself and when I went into the room she 00:27:32.120 --> 00:27:34.320 was going shook my hand and says to me 00:27:34.320 --> 00:27:36.760 Martin I'm sorry to tell you I'm not 00:27:36.760 --> 00:27:38.760 sure the exact words but you have 00:27:38.760 --> 00:27:40.039 Alzheimer's 00:27:40.039 --> 00:27:42.720 dementia well you're you're taken back 00:27:42.720 --> 00:27:45.480 you're just shock she says you want me 00:27:45.480 --> 00:27:49.120 to get your son bring him in and I I 00:27:49.120 --> 00:27:52.000 says no not definitely not to my son I 00:27:52.000 --> 00:27:53.840 get my sons together when to go home and 00:27:53.840 --> 00:27:55.559 I'll tell them when to go home I got 00:27:55.559 --> 00:27:57.679 them settled down and things I says look 00:27:57.679 --> 00:28:00.240 I feel gr I still feel the same thing 00:28:00.240 --> 00:28:01.960 I'm still your daddy I'm still the thing 00:28:01.960 --> 00:28:04.720 and I'm still get carrying on and two of 00:28:04.720 --> 00:28:06.360 my sons are two 00:28:06.360 --> 00:28:10.080 M Twins and there there we go oh God not 00:28:10.080 --> 00:28:11.799 be able to tell him anything now not 00:28:11.799 --> 00:28:14.279 keep a secret he can't keep anything but 00:28:14.279 --> 00:28:16.919 it was it was good the experience was 00:28:16.919 --> 00:28:21.000 good be aware of our details don't make 00:28:21.000 --> 00:28:25.159 us repeat our story multiple times it 00:28:25.159 --> 00:28:29.080 makes us feel like we are being tested 00:28:29.080 --> 00:28:32.640 Ed read your colleagues assessments 00:28:32.640 --> 00:28:36.000 repeating information is 00:28:36.000 --> 00:28:40.080 exhausting for us yeah again I think 00:28:40.080 --> 00:28:41.640 that's it you know the nurse comes in 00:28:41.640 --> 00:28:43.360 you see the nurse and Tre eyes you tell 00:28:43.360 --> 00:28:46.120 them the story you then see whoever you 00:28:46.120 --> 00:28:48.600 move to into the cubicles or into the 00:28:48.600 --> 00:28:51.080 back bit of the any you tell them your 00:28:51.080 --> 00:28:53.679 story the doctor then comes in or a 00:28:53.679 --> 00:28:56.480 doctor comes in and you tell them it but 00:28:56.480 --> 00:28:58.519 there may be not the particular doctor 00:28:58.519 --> 00:29:00.039 you need to see if it's something 00:29:00.039 --> 00:29:01.840 specific you're there for you know if it 00:29:01.840 --> 00:29:04.600 was for example something to do with 00:29:04.600 --> 00:29:06.600 your heart you know you would get a 00:29:06.600 --> 00:29:08.399 general doctor come in talk oh you need 00:29:08.399 --> 00:29:10.000 to you know we need to get something 00:29:10.000 --> 00:29:12.159 done from Cardiology or whatever they 00:29:12.159 --> 00:29:13.919 can die and you have to repeat the whole 00:29:13.919 --> 00:29:17.200 thing again uh and that can become quite 00:29:17.200 --> 00:29:18.880 frustrating and you sort of think you 00:29:18.880 --> 00:29:21.279 know can you not read you know can you 00:29:21.279 --> 00:29:23.000 not actually look at the notes that have 00:29:23.000 --> 00:29:26.559 been taken um 10 times beforehand uh and 00:29:26.559 --> 00:29:28.120 you s of are they're trying to trick you 00:29:28.120 --> 00:29:29.880 right here you know trying to get you to 00:29:29.880 --> 00:29:32.120 say something different to what you had 00:29:32.120 --> 00:29:35.320 said before I think it is I think it's a 00:29:35.320 --> 00:29:38.960 challenge you know because as I say by 00:29:38.960 --> 00:29:40.440 you're that stage you're already in a 00:29:40.440 --> 00:29:43.600 real state of confusion and panic 00:29:43.600 --> 00:29:47.880 and um a bit more unsettled you know so 00:29:47.880 --> 00:29:50.559 to be asked the same story over again 00:29:50.559 --> 00:29:52.399 can become very frustrating and I think 00:29:52.399 --> 00:29:54.480 at times in I think you can become a bit 00:29:54.480 --> 00:29:56.320 sharper than maybe that what you would 00:29:56.320 --> 00:29:59.600 normally be but it's because you sort of 00:29:59.600 --> 00:30:01.120 you're fed up with the length of time 00:30:01.120 --> 00:30:02.720 you sort of have sitting there probably 00:30:02.720 --> 00:30:04.080 waiting anyway and you haven't seen 00:30:04.080 --> 00:30:05.640 anybody and then the next person come 00:30:05.640 --> 00:30:07.240 say ask the exactly the same question 00:30:07.240 --> 00:30:10.200 again you s think like this has moved on 00:30:10.200 --> 00:30:12.399 nowhere you know you 00:30:12.399 --> 00:30:14.440 haven't you know you're asking me what 00:30:14.440 --> 00:30:16.880 the person asked me two hours ago but 00:30:16.880 --> 00:30:19.159 you're doing nothing different but yes I 00:30:19.159 --> 00:30:21.360 think it is a challenge you know with I 00:30:21.360 --> 00:30:23.440 think it's a challenge for anybody but I 00:30:23.440 --> 00:30:24.760 think for somebody with a dementia 00:30:24.760 --> 00:30:26.720 diagnosis yesterday is more of a 00:30:26.720 --> 00:30:29.519 challenge you use Clear 00:30:29.519 --> 00:30:33.799 language if you are going to perform an 00:30:33.799 --> 00:30:36.399 intervention talk to us 00:30:36.399 --> 00:30:40.440 beforehand and explain each step in 00:30:40.440 --> 00:30:44.559 clear words or with gestures if our 00:30:44.559 --> 00:30:46.720 understanding is very 00:30:46.720 --> 00:30:48.880 limited give us 00:30:48.880 --> 00:30:52.799 time explaining the procedure will help 00:30:52.799 --> 00:30:54.960 us to 00:30:54.960 --> 00:30:58.320 participate if I need reassurance 00:30:58.320 --> 00:31:01.600 reassure me I'm not saying you have to 00:31:01.600 --> 00:31:04.600 have dementia to understand it what I'm 00:31:04.600 --> 00:31:08.679 saying is what I said to students is 00:31:08.679 --> 00:31:12.320 take it easy at the beginning don't 00:31:12.320 --> 00:31:16.200 bombard them with a rapid release of 00:31:16.200 --> 00:31:20.480 questions and don't L link questions 00:31:20.480 --> 00:31:23.480 together make the subject if it is 00:31:23.480 --> 00:31:25.760 driving something like 00:31:25.760 --> 00:31:29.120 that say are you driving your 00:31:29.120 --> 00:31:32.639 car wait for the answer and then if they 00:31:32.639 --> 00:31:36.200 say no I'm not then you can discuss it 00:31:36.200 --> 00:31:39.440 with them but I think if you go into 00:31:39.440 --> 00:31:43.639 something you know it only makes them I 00:31:43.639 --> 00:31:46.840 can't interrupt this but I don't agree 00:31:46.840 --> 00:31:50.360 with her so very gently say l thank you 00:31:50.360 --> 00:31:54.720 very much for coming to talk to me and I 00:31:54.720 --> 00:31:58.559 know very little uh about how you're 00:31:58.559 --> 00:32:02.320 feeling at the moment so can you tell me 00:32:02.320 --> 00:32:06.080 how you felt when you got your diagnosis 00:32:06.080 --> 00:32:09.760 what went before did you think you had 00:32:09.760 --> 00:32:12.639 dementia and how you felt when you 00:32:12.639 --> 00:32:17.320 actually were told you have 00:32:17.320 --> 00:32:20.440 dementia makes a 00:32:20.440 --> 00:32:25.000 difference Health and Social Care 00:32:25.000 --> 00:32:30.320 staff working with any form of 00:32:30.519 --> 00:32:33.519 dementia 00:32:33.960 --> 00:32:36.720 need to 00:32:36.720 --> 00:32:39.399 communicate 00:32:39.399 --> 00:32:42.760 clearly with any 00:32:42.760 --> 00:32:47.159 individual with any form of 00:32:47.159 --> 00:32:49.639 dementia they 00:32:49.639 --> 00:32:55.080 need to give clear 00:32:56.000 --> 00:32:58.919 instructions their need 00:32:58.919 --> 00:33:00.159 to 00:33:00.159 --> 00:33:02.080 ensure that 00:33:02.080 --> 00:33:05.760 people with whom they are 00:33:05.760 --> 00:33:07.960 working 00:33:07.960 --> 00:33:12.360 have a clear 00:33:12.360 --> 00:33:14.639 understanding of 00:33:14.639 --> 00:33:18.360 what is being 00:33:19.600 --> 00:33:25.039 discussed and that they 00:33:25.039 --> 00:33:29.159 have made clear 00:33:29.159 --> 00:33:31.279 here 00:33:31.279 --> 00:33:36.519 exactly what is being 00:33:36.799 --> 00:33:41.240 shared what is being 00:33:41.960 --> 00:33:46.519 said maintain our confidentiality and 00:33:46.519 --> 00:33:51.120 dignity share information with us 00:33:51.120 --> 00:33:53.919 sensitively and take into 00:33:53.919 --> 00:33:58.639 consideration our confidentiality 00:33:58.720 --> 00:34:02.080 privacy and dignity are 00:34:02.080 --> 00:34:05.559 important we may not want other patients 00:34:05.559 --> 00:34:08.918 visitors to know we have 00:34:08.918 --> 00:34:13.838 dementia yeah within the hold of 00:34:13.960 --> 00:34:17.639 dementia I find myself falling apart I 00:34:17.639 --> 00:34:19.879 find 00:34:19.879 --> 00:34:22.879 myself 00:34:23.960 --> 00:34:29.560 unable to be the person I was 00:34:29.560 --> 00:34:31.919 to 00:34:33.079 --> 00:34:36.000 communicate the 00:34:36.000 --> 00:34:40.399 way I should be able to 00:34:43.239 --> 00:34:45.918 communicate I 00:34:45.918 --> 00:34:49.158 lost my 00:34:49.639 --> 00:34:52.719 skills I lost a lot 00:34:52.719 --> 00:34:56.999 of what was 00:34:59.960 --> 00:35:02.880 what being 00:35:03.119 --> 00:35:05.280 me as a 00:35:05.280 --> 00:35:08.280 person 00:35:14.200 --> 00:35:17.320 was I 00:35:17.320 --> 00:35:20.720 was I was 00:35:22.760 --> 00:35:27.160 lost well for for myself or anybody of 00:35:27.160 --> 00:35:30.119 the just P his like hard if I come in as 00:35:30.119 --> 00:35:30.920 a 00:35:30.920 --> 00:35:32.960 patient they don't know why I've got the 00:35:32.960 --> 00:35:36.680 Mana unless I tell them I've got the 00:35:36.960 --> 00:35:40.480 Mana don't don't have me 00:35:40.480 --> 00:35:43.000 to have to say that I've got the Manion 00:35:43.000 --> 00:35:46.200 just treat me where courtesy of of think 00:35:46.200 --> 00:35:49.319 most most sitting rooms in the hospital 00:35:49.319 --> 00:35:51.920 you know are like they're Havoc if it 00:35:51.920 --> 00:35:54.800 comes to a thing many of places been in 00:35:54.800 --> 00:35:56.640 I've turned around and says look I'm in 00:35:56.640 --> 00:35:58.680 the early stages of the Mana could you 00:35:58.680 --> 00:36:00.480 give me a we bit of time 00:36:00.480 --> 00:36:04.680 here and just things get mixed up for I 00:36:04.680 --> 00:36:07.079 think could just if my name would come 00:36:07.079 --> 00:36:08.720 up in that 00:36:08.720 --> 00:36:12.599 computer without me having to say and 00:36:12.599 --> 00:36:14.480 200 people or 100 people behind me 00:36:14.480 --> 00:36:19.720 listening he's got the Mana list he's 00:36:19.720 --> 00:36:22.240 different it's different just just come 00:36:22.240 --> 00:36:24.240 up on the computer they made away they 00:36:24.240 --> 00:36:25.839 know they I've got the Mana where we're 00:36:25.839 --> 00:36:27.240 just talking about a blue heart or 00:36:27.240 --> 00:36:30.560 purple or something like that and see 00:36:30.560 --> 00:36:32.000 what were the attitude changes that 00:36:32.000 --> 00:36:35.720 those change have used are have used our 00:36:35.720 --> 00:36:38.319 we th card or we IDE I've used to be 00:36:38.319 --> 00:36:42.520 smart card not the smart card uh JN card 00:36:42.520 --> 00:36:45.319 I've used the JN card the difference 00:36:45.319 --> 00:36:47.760 those things make and change people's 00:36:47.760 --> 00:36:50.920 attitude it's wonderful wonderful 00:36:50.920 --> 00:36:53.319 provide a support 00:36:53.319 --> 00:36:56.640 person having a designated support 00:36:56.640 --> 00:37:01.160 person can help to keep us calm and 00:37:01.160 --> 00:37:04.960 reassured one key person who supports us 00:37:04.960 --> 00:37:09.079 through our stay makes a huge difference 00:37:09.079 --> 00:37:12.359 to our Hospital experience I had to go 00:37:12.359 --> 00:37:14.880 and get an operation to take out a tumor 00:37:14.880 --> 00:37:16.920 on my 00:37:16.920 --> 00:37:19.680 leg and uh it was quite difficult 00:37:19.680 --> 00:37:21.599 because the specialist even though she 00:37:21.599 --> 00:37:26.160 was uh taking the the tumor out she was 00:37:26.160 --> 00:37:29.000 quite um a lot of words that she was 00:37:29.000 --> 00:37:31.079 using was very difficult for me to 00:37:31.079 --> 00:37:33.000 understand because they were quite 00:37:33.000 --> 00:37:36.920 Technical and she then got a a a young 00:37:36.920 --> 00:37:40.920 nurse to come in and help me because she 00:37:40.920 --> 00:37:44.079 also knocked me out for six hours she 00:37:44.079 --> 00:37:47.040 put me asleep for 6 hours where she was 00:37:47.040 --> 00:37:49.640 on a lot of things she was help the the 00:37:49.640 --> 00:37:52.680 the other lady was helping me she met me 00:37:52.680 --> 00:37:56.560 I was there for about um a full full day 00:37:56.560 --> 00:37:57.960 overnight 00:37:57.960 --> 00:38:01.079 and that young lady was a major help to 00:38:01.079 --> 00:38:03.560 me in the hospital because she helped me 00:38:03.560 --> 00:38:07.319 even write down my words she helped me 00:38:07.319 --> 00:38:11.599 even find places and she also said uh 00:38:11.599 --> 00:38:14.359 even tomorrow when you go home now that 00:38:14.359 --> 00:38:17.119 you've been operated this is what you do 00:38:17.119 --> 00:38:20.440 so even though the specialist operated 00:38:20.440 --> 00:38:24.040 me well that lady was a massive helper 00:38:24.040 --> 00:38:27.160 she made the difference and I I because 00:38:27.160 --> 00:38:29.480 I spoke to the specialist and you even 00:38:29.480 --> 00:38:32.319 use my card and said I know you're going 00:38:32.319 --> 00:38:35.800 to help me but I've got Alzheimer's and 00:38:35.800 --> 00:38:38.480 I need someone to talk to me that give 00:38:38.480 --> 00:38:41.319 me advice and um because some of the 00:38:41.319 --> 00:38:43.280 things you've said you're going to do I 00:38:43.280 --> 00:38:46.599 haven't really understood fully what's 00:38:46.599 --> 00:38:48.319 going to happen or even how I help 00:38:48.319 --> 00:38:51.240 myself so and when that other lady came 00:38:51.240 --> 00:38:53.680 in she was massively helpful to me 00:38:53.680 --> 00:38:55.280 possibly like other people with Dem 00:38:55.280 --> 00:38:57.640 Mantia I find that sometimes the 00:38:57.640 --> 00:38:59.760 difficult to understand if I haven't 00:38:59.760 --> 00:39:03.760 heard about things for a while so that 00:39:03.760 --> 00:39:07.440 other lady was a bit more explaining and 00:39:07.440 --> 00:39:11.240 also helped me make notes to write down 00:39:11.240 --> 00:39:13.280 a great understanding of what was going 00:39:13.280 --> 00:39:15.119 to happen to me and particularly how I 00:39:15.119 --> 00:39:17.200 dealt with myself the next few days when 00:39:17.200 --> 00:39:19.839 I got home having that interface between 00:39:19.839 --> 00:39:20.680 the 00:39:20.680 --> 00:39:24.880 consultant and also uh uh uh uh the 00:39:24.880 --> 00:39:29.640 patient with that specialist nurse was 00:39:29.640 --> 00:39:33.400 invaluable and that I think is something 00:39:33.400 --> 00:39:36.680 which can be really helpful to other 00:39:36.680 --> 00:39:39.840 people one thing that I would insist 00:39:39.840 --> 00:39:41.319 [Music] 00:39:41.319 --> 00:39:44.880 on would be 00:39:44.880 --> 00:39:48.720 that I 00:39:49.040 --> 00:39:52.240 had someone with 00:39:52.240 --> 00:39:56.680 me that I trust 00:39:58.480 --> 00:40:01.920 someone with me 00:40:03.359 --> 00:40:06.359 that 00:40:06.560 --> 00:40:09.200 could be 00:40:09.200 --> 00:40:12.200 there 00:40:13.800 --> 00:40:17.160 to like say I would either be taking my 00:40:17.160 --> 00:40:19.319 own 00:40:19.319 --> 00:40:23.839 notes that's another thing I'd lost my 00:40:23.839 --> 00:40:28.400 writing skills i' had lost I mean 00:40:28.400 --> 00:40:32.680 as well as losing my 00:40:32.680 --> 00:40:35.960 verbosity I had 00:40:35.960 --> 00:40:40.000 lost my ability to 00:40:40.040 --> 00:40:44.640 write and I have been practicing 00:40:45.400 --> 00:40:49.560 writing just to get myself back off to 00:40:49.560 --> 00:40:53.040 speed to be able 00:40:53.040 --> 00:40:58.160 to communicate effectively 00:40:59.480 --> 00:41:01.000 I've also been 00:41:01.000 --> 00:41:04.200 reading a 00:41:05.960 --> 00:41:10.079 lot to try 00:41:10.160 --> 00:41:15.880 and ensure that my communication 00:41:15.960 --> 00:41:19.319 is as it should 00:41:19.319 --> 00:41:24.920 be as I consider it should 00:41:25.839 --> 00:41:30.079 be cuz I'm a hard 00:41:32.359 --> 00:41:35.680 Taskmaster the following scene is based 00:41:35.680 --> 00:41:37.839 on our real life 00:41:37.839 --> 00:41:41.599 experiences of poor health care 00:41:41.599 --> 00:41:42.830 interactions 00:41:42.830 --> 00:42:01.659 [Music] 00:42:02.760 --> 00:42:04.800 without a clear 00:42:04.800 --> 00:42:08.119 introduction we may feel rushed or 00:42:08.119 --> 00:42:11.040 panicked unsure of what is 00:42:11.040 --> 00:42:13.800 happening which may unnecessarily 00:42:13.800 --> 00:42:15.640 increase our 00:42:15.640 --> 00:42:19.650 anxiety and generate unexpected 00:42:19.650 --> 00:42:20.839 [Music] 00:42:20.839 --> 00:42:24.559 reactions insufficient support with wayf 00:42:24.559 --> 00:42:27.760 finding could leave us disoriented ated 00:42:27.760 --> 00:42:28.920 and 00:42:28.920 --> 00:42:32.359 Confused ultimately reducing our powers 00:42:32.359 --> 00:42:33.440 of 00:42:33.440 --> 00:42:35.830 concentration for the following 00:42:35.830 --> 00:42:37.160 [Music] 00:42:37.160 --> 00:42:40.599 appointment disorganized and chaotic 00:42:40.599 --> 00:42:44.760 clinical space may be distracting or 00:42:44.760 --> 00:42:48.800 overwhelming for us reducing ability to 00:42:48.800 --> 00:42:51.839 focus and 00:42:51.839 --> 00:42:55.480 communicate not explaining procedures or 00:42:55.480 --> 00:42:58.359 interventions clearly in advance can 00:42:58.359 --> 00:43:00.920 cause us upset or 00:43:00.920 --> 00:43:05.880 distress especially as our dementia 00:43:05.960 --> 00:43:09.640 advances not explaining next steps in 00:43:09.640 --> 00:43:12.400 advance increases our 00:43:12.400 --> 00:43:15.880 anxiety and 00:43:17.200 --> 00:43:20.300 [Music] 00:43:20.760 --> 00:43:23.440 confusion uh Hazel and baby is that 00:43:23.440 --> 00:43:25.240 right yeah I'm 00:43:25.240 --> 00:43:27.960 Dr tonight 00:43:27.960 --> 00:43:30.720 without a clear and full 00:43:30.720 --> 00:43:33.760 introduction we may not realize the 00:43:33.760 --> 00:43:35.480 purpose of the 00:43:35.480 --> 00:43:38.440 appointment 00:43:38.440 --> 00:43:41.240 um no I'm not I'm not really seeing 00:43:41.240 --> 00:43:43.640 anything there there's no results back 00:43:43.640 --> 00:43:47.839 just yet poor positioning can hinder 00:43:47.839 --> 00:43:51.520 effective communication with 00:43:51.520 --> 00:43:54.520 us not to 00:43:54.520 --> 00:43:59.319 good we'll maybe asking as repetitive 00:43:59.319 --> 00:44:01.640 questions without 00:44:01.640 --> 00:44:05.559 context can make us feel like we are 00:44:05.559 --> 00:44:08.040 being 00:44:08.319 --> 00:44:12.240 tested speaking to a carer instead of 00:44:12.240 --> 00:44:16.720 directly to us shows a presumption about 00:44:16.720 --> 00:44:18.079 our 00:44:18.079 --> 00:44:21.640 capacity the following scene is based on 00:44:21.640 --> 00:44:25.599 our real life experiences of positive 00:44:25.599 --> 00:44:29.040 healthc care interaction 00:44:30.370 --> 00:44:33.240 [Music] 00:44:33.240 --> 00:44:36.480 thank you 00:44:39.900 --> 00:45:03.800 [Music] 00:45:03.800 --> 00:45:05.440 the consultant comes okay and I'll F 00:45:05.440 --> 00:45:09.680 this across the H yeah all 00:45:12.040 --> 00:45:15.359 right there we go like the wait the 00:45:15.359 --> 00:45:16.960 consultant will be right in through the 00:45:16.960 --> 00:45:21.079 door thank you 00:45:28.040 --> 00:45:30.400 how are you I'm Dr sville I'm one of the 00:45:30.400 --> 00:45:33.119 Consultants it's nice to meet you it's 00:45:33.119 --> 00:45:35.240 Davey is that right Dave yeah Davey I I 00:45:35.240 --> 00:45:37.440 haven't met you before um I understand 00:45:37.440 --> 00:45:39.040 that you're you're here to talk about 00:45:39.040 --> 00:45:40.640 some results that's right is that 00:45:40.640 --> 00:45:43.599 correct be okay yeah sure I I haven't 00:45:43.599 --> 00:45:46.160 been to doing too bad been keeping busy 00:45:46.160 --> 00:45:47.559 and very 00:45:47.559 --> 00:45:52.079 active so I do and uh yeah just keep 00:45:52.079 --> 00:45:54.359 keep busy okay okay how have you been 00:45:54.359 --> 00:45:57.119 sleeping recently sleep's been a bit on 00:45:57.119 --> 00:46:01.200 off um but uh I always get caught up 00:46:01.200 --> 00:46:03.160 sometimes away quite early right but uh 00:46:03.160 --> 00:46:05.760 I can get caught up the next night okay 00:46:05.760 --> 00:46:07.800 and what time would you go to bed at 00:46:07.800 --> 00:46:11.440 roughly normally try half time 11:00 um 00:46:11.440 --> 00:46:13.839 probably a bit overeen of anything right 00:46:13.839 --> 00:46:16.240 I started sweet stuff I Can't Get Enough 00:46:16.240 --> 00:46:19.200 at the whatever's uh going on you know 00:46:19.200 --> 00:46:21.960 right okay and then just about some of 00:46:21.960 --> 00:46:24.760 your medications um has anything changed 00:46:24.760 --> 00:46:27.440 recently at all no they've kept it 00:46:27.440 --> 00:46:30.280 they kept the medication as it is right 00:46:30.280 --> 00:46:32.000 we can maybe spend a bit more time 00:46:32.000 --> 00:46:34.240 looking at well really not not too bad 00:46:34.240 --> 00:46:36.599 just how how how do you see things 00:46:36.599 --> 00:46:40.200 progressing for for myself okay okay so 00:46:40.200 --> 00:46:42.680 if you've got that Rapport it makes a 00:46:42.680 --> 00:46:45.920 real difference and show appreciation 00:46:45.920 --> 00:46:49.760 cuz the staff do an amazing thing and in 00:46:49.760 --> 00:46:52.520 very difficult environment and I have to 00:46:52.520 --> 00:46:55.760 say thank you to the nursing staff and 00:46:55.760 --> 00:46:58.440 to the medics who do take such good care 00:46:58.440 --> 00:46:59.319 of 00:46:59.319 --> 00:47:02.400 us thank you for staying with us 00:47:02.400 --> 00:47:04.200 throughout this 00:47:04.200 --> 00:47:07.079 documentary we hope it has provided you 00:47:07.079 --> 00:47:10.119 with a deeper understanding of what it 00:47:10.119 --> 00:47:13.559 is like to live with dementia and has 00:47:13.559 --> 00:47:17.160 offered practical tips that you can now 00:47:17.160 --> 00:47:18.680 put into 00:47:18.680 --> 00:47:22.720 practice finally a big thank you from 00:47:22.720 --> 00:47:25.880 all the members at dementa ni for the 00:47:25.880 --> 00:47:27.559 work that you do 00:47:27.559 --> 00:47:30.880 that has a positive impact on the daily 00:47:30.880 --> 00:47:33.880 lives of real people like 00:47:33.880 --> 00:47:37.160 us matter have to assume we have 00:47:37.160 --> 00:47:40.480 capacity mhm is that the size of my 00:47:40.480 --> 00:47:44.359 bladder the size of my 00:47:50.160 --> 00:47:54.200 nose those words my feet went from 00:47:54.200 --> 00:47:58.839 beneath me could not believe what I 00:47:59.180 --> 00:48:00.800 [Music] 00:48:00.800 --> 00:48:03.359 I I 00:48:03.359 --> 00:48:06.720 saw I 00:48:09.559 --> 00:48:15.400 give it's a slippy R but I keep my feet 00:48:15.400 --> 00:48:19.359 bled I have the strength to hold the C 00:48:19.359 --> 00:48:21.559 I've been 00:48:21.559 --> 00:48:25.800 handed If I Stumble if my feet fall or 00:48:25.800 --> 00:48:27.680 if I need 00:48:27.680 --> 00:48:31.880 assistance I know the journey is long 00:48:31.880 --> 00:48:36.040 but it's so wor 00:48:36.040 --> 00:48:39.880 that my voice is mind I don't need 00:48:39.880 --> 00:48:43.800 someone to say what's on my mind though 00:48:43.800 --> 00:48:47.480 the love I have to help me is the best 00:48:47.480 --> 00:48:51.400 that you could find and I worry for my 00:48:51.400 --> 00:48:55.559 loved ones cuz the future is so wonder I 00:48:55.559 --> 00:48:58.720 stay strong 00:49:01.520 --> 00:49:02.200 it's 00:49:02.200 --> 00:49:06.240 ay but I keep 00:49:06.400 --> 00:49:10.359 my I have the strength to hold the C 00:49:10.359 --> 00:49:12.559 I've been 00:49:12.559 --> 00:49:17.400 handed If I Stumble my feet fall or if I 00:49:17.400 --> 00:49:21.480 need some assistance I know the journey 00:49:21.480 --> 00:49:23.040 long 00:49:23.040 --> 00:49:28.000 but it's the wor that distance 00:49:28.000 --> 00:49:33.079 [Music] 00:49:35.880 --> 00:49:39.559 [Music] 00:49:39.559 --> 00:49:41.200 I found my 00:49:41.200 --> 00:49:44.240 place surrounded by 00:49:44.240 --> 00:49:49.400 faces who understand 00:49:50.040 --> 00:49:53.200 me our worries and 00:49:53.200 --> 00:49:58.640 fears so disappear after 00:49:59.140 --> 00:50:02.079 [Music] 00:50:02.079 --> 00:50:07.559 Aver and a warm cup of tea