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 much can trying 00:20:59.320 --> 00:21:04.699 to process things, you know, that would be the biggest challenge. 00:21:05.525 --> 00:21:08.870 It's even more confusing, cuz you're already not well, you know, 00:21:09.280 --> 00:21:12.204 you're already worried about what's going on, why you're there 00:21:12.784 --> 00:21:18.098 and the noise and you know yourself anybody is sort of affected, 00:21:18.098 --> 00:21:19.242 in an E&A Department. 00:21:19.242 --> 00:21:23.190 There's so much banging and cluttering and there's noise going 00:21:23.190 --> 00:21:24.949 on either side of you in front of you 00:21:24.949 --> 00:21:27.873 behind you, you know, there's so many conversations going on, 00:21:28.524 --> 00:21:32.856 you know, quite often you're planted quite close to the nursery station 00:21:32.856 --> 00:21:36.974 because there's no cubicles, you know, and there's all the noise 00:21:36.974 --> 00:21:39.030 and all the movements sort of going on that 00:21:39.030 --> 00:21:41.889 and it it can become very very confusing 00:21:41.889 --> 00:21:46.796 and you know, it's a hard thing to process any information 00:21:46.796 --> 00:21:48.633 and then when they come to speak to you 00:21:49.680 --> 00:21:51.559 you know there's so much noise going on 00:21:51.559 --> 00:21:56.760 there's so much background noise and conversations going on around you 00:21:56.760 --> 00:22:00.021 that is hard to process what's actually being said to you 00:22:00.021 --> 00:22:03.729 whereas again a very simple thing would be to have somewhere 00:22:03.729 --> 00:22:08.000 that, once they know you have a dementia diagnosis 00:22:08.000 --> 00:22:10.779 and to ask the person, you know, "What can we do to help?" 00:22:10.779 --> 00:22:13.013 and I think most people would say: 00:22:13.013 --> 00:22:17.062 "If I could have a quiet room to have whenever the doctor's talking to me." 00:22:17.960 --> 00:22:21.900 I think that would make a big difference, you know, 00:22:21.900 --> 00:22:24.480 you would sort of know that during that important time 00:22:24.480 --> 00:22:27.030 when you're meant to be able to take information in, 00:22:27.820 --> 00:22:30.577 you know, that they would take you somewhere that, 00:22:30.577 --> 00:22:36.500 that could happen easier than it does in the busy A&E Department 00:22:36.720 --> 00:22:40.080 It was a game which I mentioned in our pause (?) 00:22:40.080 --> 00:22:46.872 It was a new hospital absolutely beautiful like an into a NDFI 20 (?) hotel 00:22:46.872 --> 00:22:49.578 but you go in there you're not coming back out 00:22:49.578 --> 00:22:55.822 there is no signage anywhere and every corridor looks exactly the same 00:22:55.822 --> 00:22:59.960 and you sort of have to go up in the lift and go along a bit then 00:22:59.960 --> 00:23:01.880 go down in a lift and go along a bit and 00:23:01.880 --> 00:23:07.253 then come back up again, you know, because of the way they're intertwined 00:23:07.253 --> 00:23:11.299 and as I say, you come out of a lift but there's no signage to tell you 00:23:11.299 --> 00:23:14.760 to turn left, turn right or what way to go, 00:23:14.760 --> 00:23:18.600 you know, and that was a horrible experience NOTE Paragraph 00:23:18.600 --> 00:23:25.776 S? Well, I have had the experience of going into hospital 00:23:26.320 --> 00:23:30.109 under an am.. with an ambulance during the times of Covid 00:23:30.875 --> 00:23:36.080 and the ambulance team were fantastic 00:23:36.080 --> 00:23:38.729 because they were aware of my challenges. 00:23:39.039 --> 00:23:45.833 They thought I had a triple A but it actually turned out to be kidney stones 00:23:46.240 --> 00:23:49.120 but when they took me into the hospital, rather than just sitting there 00:23:51.480 --> 00:23:55.120 in the general area, they accelerated my Passage through 00:23:58.000 --> 00:24:01.159 to being on a a bed in one of the cubicles 00:24:01.159 --> 00:24:09.225 because they knew that with my behavioural variant of the dementia, of the FTD, 00:24:09.225 --> 00:24:14.161 the frontal temporal dementia, that my filters had disappeared: 00:24:14.161 --> 00:24:19.890 I would say things as I felt about them, I would swear, 00:24:20.262 --> 00:24:24.541 which I wouldn't have done in the past, but frustration, 00:24:24.541 --> 00:24:30.075 the feeling of not being able to express yourself as as I once did, 00:24:30.075 --> 00:24:33.627 these things lead to just filterless behaviours. 00:24:34.035 --> 00:24:38.173 And it's not that you're being unkind or nasty to the staff, 00:24:38.482 --> 00:24:40.777 it's just how things come across. 00:24:40.886 --> 00:24:44.025 So it's important that the staff in that environment 00:24:44.025 --> 00:24:49.923 build a rapport with the patient, build the trust and the confidence 00:24:49.923 --> 00:24:54.100 where they can exchange freely and happily. NOTE Paragraph 00:24:54.100 --> 00:24:59.014 S? And the second time I developed scintillitis (?) in my eye 00:24:59.423 --> 00:25:02.501 and I went to the patient portal (?) late in the evening 00:25:02.501 --> 00:25:06.275 and he rang the casualty to say they should expect me, 00:25:06.275 --> 00:25:09.535 so, they were expecting them and again they knew at that time 00:25:09.535 --> 00:25:13.133 I was living with dementia, so the consultant actually saw me 00:25:13.133 --> 00:25:15.781 and the emergency department was very busy. 00:25:15.781 --> 00:25:18.230 So she actually took me to a very quiet place, 00:25:18.230 --> 00:25:20.940 away from the the emergency department 00:25:20.940 --> 00:25:24.404 and they did all they had to do at that time. 00:25:25.000 --> 00:25:29.667 And her care and even the nursing care was first class at that time. 00:25:30.410 --> 00:25:36.153 With really noise and a lot of people, yeah I find people's faces just blur 00:25:36.686 --> 00:25:40.091 and the noise just, it really scrambles my brain. 00:25:40.091 --> 00:25:43.270 I can't think or focus on anything with noise. 00:25:43.270 --> 00:25:45.669 A quiet place would be ideal yeah, yeah NOTE Paragraph 00:25:46.240 --> 00:25:50.199 Assume we have capacity. 00:25:50.199 --> 00:25:54.023 Don't make assumptions about our level of capacity 00:25:54.023 --> 00:25:59.903 or ability to engage in our care-planning and decision-making 00:26:00.159 --> 00:26:04.704 I may not have capacity to make every decision 00:26:05.112 --> 00:26:11.743 but there will be some decisions I can still make and want to make. 00:26:13.136 --> 00:26:17.617 Don't speak to our family members and ignore us, 00:26:17.617 --> 00:26:21.200 speak directly to us first 00:26:21.200 --> 00:26:26.593 and allow us to defer to our support person if we need to NOTE Paragraph 00:26:28.760 --> 00:26:31.880 S? Ask me what you need, 00:26:31.880 --> 00:26:37.939 what -- sorry -- I would want them to ask me, what I needed or wanted , 00:26:37.939 --> 00:26:39.464 not to presume they know 00:26:39.464 --> 00:26:43.480 because they might have had somebody in earlier that day 00:26:43.480 --> 00:26:46.641 or the day before or the week before with the dementia diagnosis: 00:26:46.641 --> 00:26:49.909 he needs something different to what I would need, you know, 00:26:49.909 --> 00:26:55.220 so I would always say, you know, treat that person as an individual 00:26:55.220 --> 00:26:59.874 and find out what you can do that will make them them more comfortable 00:26:59.874 --> 00:27:01.204 feel safer, 00:27:01.982 --> 00:27:05.903 and and in the turn that will ease your workload 00:27:05.903 --> 00:27:10.120 because if the person with the demenia diagnosis feels relaxed 00:27:10.120 --> 00:27:15.450 and feels at ease, they're less likely to be giving hustle 00:27:15.450 --> 00:27:18.913 or be kicking off about something NOTE Paragraph 00:27:19.633 --> 00:27:21.885 S? I'm a sitting in the outside the waiting-room 00:27:22.486 --> 00:27:26.080 when she asked me could come into the room and I'll speak to you 00:27:26.080 --> 00:27:28.240 if you want your son to come in, he can come. 00:27:28.240 --> 00:27:30.063 And I says no I'll just go in myself. 00:27:30.063 --> 00:27:33.215 And when I went into the room she was going, she shook my hand 00:27:33.215 --> 00:27:35.993 and says to me: "Martin I'm sorry to tell you 00:27:36.386 --> 00:27:39.823 I'm not sure the exact words but you have Alzheimer's dementia" 00:27:40.724 --> 00:27:44.181 Well, you're you're taken aback, you're just in shock. 00:27:44.415 --> 00:27:47.421 She says "Do you want me to get your son, bring him in?" 00:27:47.909 --> 00:27:51.909 And I say "No, not definitely not to my son: 00:27:51.909 --> 00:27:53.771 I'll get my sons together when I go home 00:27:53.771 --> 00:27:57.306 and I'll tell them when I go home, I'll get them settled down and I think 00:27:57.306 --> 00:28:00.240 that I'll say 'Look, I feel great, I still feel the same thing 00:28:00.240 --> 00:28:03.586 I'm still your daddy I'm still the thing and I'll still get carrying on'." 00:28:03.586 --> 00:28:07.950 And two of my sons are ... (?) twin (? 00:28:07.950 --> 00:28:09.930 and they were going like oh God(?) 00:28:09.930 --> 00:28:11.865 not be able to tell him anything now (?) 00:28:11.865 --> 00:28:14.189 like not keep a secret he can't keep anything 00:28:14.189 --> 00:28:16.919 but it was it was good, the experience was good. NOTE Paragraph 00:28:16.919 --> 00:28:19.941 S? Be aware of our details 00:28:20.480 --> 00:28:24.270 Don't make us repeat our story multiple times. 00:28:24.699 --> 00:28:28.286 It makes us feel like we are being tested 00:28:30.169 --> 00:28:32.640 Read your colleagues assessments; 00:28:32.640 --> 00:28:38.136 Repeating information is exhausting for us 00:28:38.136 --> 00:28:41.629 S? Yeah again I think that's it, the nurse comes in, 00:28:41.640 --> 00:28:44.205 you see the nursing triage, you tell them the story. 00:28:44.615 --> 00:28:47.826 You then see whoever you move to into the cubicles 00:28:47.826 --> 00:28:51.526 or into the back set of things (?) and you tell them your story. 00:28:51.526 --> 00:28:54.509 The doctor then comes in or a doctor comes in 00:28:54.509 --> 00:28:59.330 and you tell them it but they maybe not the particular doctor you need to see 00:28:59.330 --> 00:29:01.670 if it's something specific you're there for, 00:29:01.670 --> 00:29:05.232 if it was for example something to do with your heart, you know, 00:29:05.535 --> 00:29:07.807 you would get a general doctor come and talk: 00:29:07.807 --> 00:29:11.744 "Oh you need to get something done from Cardiology" or whatever. 00:29:11.889 --> 00:29:14.697 They call down and you have to repeat the whole thing again 00:29:14.697 --> 00:29:18.626 And that can become quite frustrating and you sort of think: 00:29:18.626 --> 00:29:22.553 "Can you not read, can you not actually look at the notes 00:29:22.553 --> 00:29:25.507 that have been taken umpteen times beforehand?" 00:29:26.166 --> 00:29:29.060 And you sort of "Are they're trying to trick you right here, 00:29:29.137 --> 00:29:31.260 trying to get you to say something different 00:29:31.403 --> 00:29:33.009 to what you had said before?" 00:29:33.009 --> 00:29:38.960 I think it is, I think it's a challenge, you know because as I say, by 00:29:38.960 --> 00:29:42.449 you're at that stage you're already in a real state of confusion and panic 00:29:42.449 --> 00:29:47.185 and a bit more unsettled. 00:29:47.460 --> 00:29:49.710 So to be asked the same story over again 00:29:50.063 --> 00:29:53.199 can become very frustrating and I think at times 00:29:53.199 --> 00:29:56.860 you can become a bit sharper than maybe that what you would normally be 00:29:56.860 --> 00:30:00.900 but it's because you sort of, you're fed up with the length of time 00:30:00.900 --> 00:30:03.434 you have sitting there probably waiting anyway 00:30:03.434 --> 00:30:04.915 and you haven't seen anybody. 00:30:04.915 --> 00:30:08.345 And then the next person comes in to ask exactly the same question again 00:30:08.345 --> 00:30:10.405 you think like "This has moved on nowhere! 00:30:11.007 --> 00:30:14.077 You know you haven't, you're asking me 00:30:14.077 --> 00:30:18.214 what the person asked me two hours ago but you're doing nothing different!" 00:30:18.214 --> 00:30:21.348 but yes, I think it is a challenge, you know with -- 00:30:21.348 --> 00:30:23.237 I think it's a challenge for anybody, 00:30:23.237 --> 00:30:25.434 I think for somebody with a dementia diagnosis, 00:30:25.434 --> 00:30:27.540 yes, it is more of a challenge NOTE Paragraph 00:30:27.540 --> 00:30:29.734 S? Use clear language. 00:30:30.432 --> 00:30:36.767 If you are going to perform an intervention, talk to us beforehand 00:30:37.301 --> 00:30:43.300 and explain each step in clear words or with gestures 00:30:43.599 --> 00:30:46.720 if our understanding is very limited. 00:30:47.347 --> 00:30:48.880 Give us time, explaining the procedure will help us to participate. 00:30:54.960 --> 00:30:59.404 If I need reassurance, reassure me NOTE Paragraph 00:31:00.302 --> 00:31:03.788 S? I'm not saying you have to have dementia to understand it 00:31:04.162 --> 00:31:07.788 What I'm saying is what I said to students, is: 00:31:08.244 --> 00:31:13.342 "Take it easy at the beginning, don't bombard them 00:31:13.342 --> 00:31:20.480 with a rapid release of questions and don't link questions together. 00:31:20.895 --> 00:31:25.301 Make the subject, if it is driving, something like that: 00:31:26.609 --> 00:31:28.966 say: "Are you driving your car?" 00:31:30.146 --> 00:31:31.546 Wait for the answer, 00:31:31.890 --> 00:31:36.811 and then if they say: "no, I'm not" then you can discuss it with them. 00:31:37.301 --> 00:31:42.431 But I think if you go into something you know, it only makes them: 00:31:42.926 --> 00:31:47.415 "I can't interrupt this but I don't agree with her". 00:31:47.945 --> 00:31:53.218 So, very gently say, l thank you very much for coming to talk to me 00:31:53.863 --> 00:31:59.721 and I know very little about how you're feeling at the moment. 00:32:00.340 --> 00:32:05.596 So can you tell me how you felt when you got your diagnosis? 00:32:05.946 --> 00:32:07.360 What went before? 00:32:07.829 --> 00:32:10.324 Did you think you had dementia? 00:32:10.608 --> 00:32:16.351 And how you felt when you actually were told you have dementia?" 00:32:17.320 --> 00:32:20.440 It makes a difference. NOTE Paragraph 00:32:20.440 --> 00:32:29.057 S? Health and Social Care staff working with any form of dementia 00:32:31.381 --> 00:32:38.462 need to communicate clearly 00:32:40.022 --> 00:32:46.800 with any individual with any form of dementia. 00:32:48.010 --> 00:32:54.257 They need to give clear instructions. 00:32:56.764 --> 00:33:04.754 They need to ensure that people with whom they are working 00:33:06.483 --> 00:33:17.152 have a clear understanding of what is being discussed. 00:33:19.944 --> 00:33:28.208 And that they have made clear 00:33:29.998 --> 00:33:40.274 exactly what is being shared what is being said. NOTE Paragraph 00:33:42.740 --> 00:33:46.391 S? Maintain our confidentiality and dignity. 00:33:47.098 --> 00:33:51.544 Share information with us sensitively 00:33:51.795 --> 00:33:57.186 and take into consideration our confidentiality. 00:33:58.720 --> 00:34:02.080 Privacy and dignity are important. 00:34:02.765 --> 00:34:09.230 We may not want other patients/visitors to know we have dementia NOTE Paragraph 00:34:09.801 --> 00:34:16.949 Yeah, within the hold of dementia, I find myself falling apart, 00:34:17.359 --> 00:34:27.510 I find myself unable to be the person I was 00:34:29.478 --> 00:34:39.417 to communicate the way I should be able to communicate. 00:34:44.075 --> 00:34:54.713 I lost my skills, I lost a lot of what was, 00:34:59.698 --> 00:35:06.736 what being me as a person was. 00:35:14.848 --> 00:35:19.872 I was, I was lost. NOTE Paragraph 00:35:23.750 --> 00:35:28.867 (S?) Well, for myself or anybody, they just treat us like hard of hearing (?) 00:35:28.979 --> 00:35:33.238 But if I come in as a patient, they don't know I've got dementia 00:35:33.238 --> 00:35:35.258 unless I tell them I've got dementia 00:35:37.754 --> 00:35:43.000 Don't, don't have me to have to say that I've got dementia, 00:35:43.000 --> 00:35:46.200 just treat me with courtesy of, I think 00:35:46.200 --> 00:35:50.765 most, most sitting rooms in the hospital, you know are like they're havoc. 00:35:51.567 --> 00:35:54.800 If it comes to a thing, many such places where I've been in, 00:35:54.800 --> 00:35:58.223 I've turned around and says: "Look I'm in the early stages of dementia, 00:35:58.223 --> 00:36:00.306 could you give me a we bit of time, here?" 00:36:00.480 --> 00:36:05.286 and just things get mixed up for -- I think if just, 00:36:05.859 --> 00:36:11.081 if my name would come up in that computer without me having to say 00:36:11.366 --> 00:36:14.961 and 200 people or 100 people behind me listening: 00:36:14.961 --> 00:36:19.289 "He's got dementia listen, he's different .........(?)" 00:36:19.720 --> 00:36:23.384 it's different just just come up on the computer 00:36:23.384 --> 00:36:25.512 they made a way they know I've got dementia; 00:36:25.643 --> 00:36:29.280 well we're just talking about a blue heart or purple or something like that 00:36:29.735 --> 00:36:32.000 and see what, where the attitude changes, 00:36:32.000 --> 00:36:35.720 that those changes 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 I've used the JN card 00:36:42.520 --> 00:36:48.387 the difference those things make and change people's attitude, 00:36:48.387 --> 00:36:50.471 it's wonderful wonderful NOTE Paragraph 00:36:50.920 --> 00:36:52.925 S? Provide a support person. 00:36:53.786 --> 00:37:00.898 Having a designated support person can help to keep us calm and reassured. 00:37:01.544 --> 00:37:04.960 One key person who supports us through our stay makes a huge difference 00:37:09.079 --> 00:37:11.312 to our Hospital experience NOTE Paragraph 00:37:11.815 --> 00:37:16.908 S? I had to go and get an operation to take out a tumor on my leg 00:37:17.909 --> 00:37:19.680 and it was quite difficult 00:37:19.680 --> 00:37:24.903 because the specialist, even though she was taking the the tumor out, 00:37:25.355 --> 00:37:29.000 she was quite -- a lot of words that she was using 00:37:29.479 --> 00:37:33.266 was very difficult for me to understand because they were quite technical 00:37:33.962 --> 00:37:40.711 and she then got a young nurse to come in and help me because 00:37:40.711 --> 00:37:46.119 she also knocked me out for six hours, she put me asleep for 6 hours 00:37:46.119 --> 00:37:47.040 where she was -- 00:37:47.040 --> 00:37:51.390 and a lot of things she was help, the other lady was helping me, 00:37:51.390 --> 00:37:52.680 she met me. 00:37:52.680 --> 00:37:57.349 I was there for about a full day overnight 00:37:57.739 --> 00:38:02.313 and that young lady was a major help to me in the hospital 00:38:02.313 --> 00:38:06.381 because she helped me even write down my words, 00:38:06.677 --> 00:38:11.067 she helped me even find places and she also said: 00:38:11.440 --> 00:38:15.111 "Even tomorrow when you go home now that you've been operated, 00:38:15.111 --> 00:38:16.736 this is what you do." 00:38:17.009 --> 00:38:21.123 So even though the specialist operated me well, 00:38:21.740 --> 00:38:24.151 that lady was a massive helper. 00:38:24.151 --> 00:38:28.695 She made the difference and I -- because I spoke to the specialist 00:38:28.695 --> 00:38:32.971 and you even used my card and I said I know you're going to help me NOTE Paragraph 00:38:33.310 --> 00:38:39.131 but I've got Alzheimer's and I need someone to talk to me, that give me advice 00:38:39.587 --> 00:38:42.853 and because some of the things you've said you're going to do 00:38:43.280 --> 00:38:47.270 I haven't really understood fully what's going to happen 00:38:47.270 --> 00:38:49.150 or even how I help myself. 00:38:49.150 --> 00:38:53.426 So, when that other lady came in, she was massively helpful to me. 00:38:53.680 --> 00:38:55.700 Possibly like other people with Dementia 00:38:55.700 --> 00:38:58.787 I find that some things are difficult to understand 00:38:59.003 --> 00:39:01.736 if I haven't heard about things for a while. 00:39:02.027 --> 00:39:06.689 So that other lady was a bit more explaining 00:39:07.110 --> 00:39:11.116 and also helped me make notes to write down: 00:39:11.116 --> 00:39:14.065 a great understanding of what was going to happen to me 00:39:14.065 --> 00:39:17.871 and particularly how I dealt with myself the next few days when I got home NOTE Paragraph 00:39:18.141 --> 00:39:21.015 S? Having that interface between the consultant 00:39:21.408 --> 00:39:30.301 and also the patient with that specialist nurse was invaluable. 00:39:30.301 --> 00:39:36.348 And that, I think, is something which can be really helpful to other people. NOTE Paragraph 00:39:36.680 --> 00:39:47.229 S? One thing that I would insist on would be that I had 00:39:50.155 --> 00:40:08.585 someone with me that I trust, someone with me that could be there, 00:40:10.037 --> 00:40:18.538 to like, say, (?) I would either be taking my own notes. 00:40:20.091 --> 00:40:25.279 That's another thing I'd lost my writing skills 00:40:25.279 --> 00:40:27.520 I'd lost, I mean, 00:40:28.400 --> 00:40:38.674 as well as losing my verbosity I had lost my ability to write 00:40:40.984 --> 00:40:44.640 and I have been practicing writing 00:40:46.163 --> 00:40:49.151 just to get myself back off to speed, 00:40:50.012 --> 00:40:56.288 to be able to communicate effectively 00:40:59.480 --> 00:41:12.068 I've also been reading a lot to try and ensure 00:41:12.068 --> 00:41:18.153 that my communication is as it should be, 00:41:18.809 --> 00:41:23.371 as I consider it should be, 00:41:26.759 --> 00:41:29.601 because I'm a hard taskmaster. 00:41:32.991 --> 00:41:35.680 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 --> 00:42:02.379 [Music] NOTE Paragraph 00:42:02.760 --> 00:42:08.119 S? Without a clear introduction, we may feel rushed or panicked, 00:42:08.822 --> 00:42:15.545 unsure of what is happening, which may unnecessarily increase our anxiety 00:42:16.319 --> 00:42:19.805 and generate unexpected reactions. 00:42:21.311 --> 00:42:29.312 Insufficient support with wayfinding could leave us disorientated and confused, 00:42:29.964 --> 00:42:34.070 ultimately reducing our powers of concentration 00:42:34.070 --> 00:42:36.611 for the following appointment. 00:42:37.627 --> 00:42:46.326 Disorganized and chaotic clinical space may be distracting or overwhelming for us, 00:42:46.326 --> 00:42:50.787 reducing ability to focus and communicate 00:42:52.538 --> 00:42:58.035 Not explaining procedures or interventions clearly in advance 00:42:58.035 --> 00:43:04.921 can cause us upset or distress, especially as our dementia advances. 00:43:06.665 --> 00:43:14.948 Not explaining next steps in advance increases our anxiety and confusion. NOTE Paragraph 00:43:20.760 --> 00:43:23.753 S? Hazel and David, is that right? NOTE Paragraph 00:43:23.753 --> 00:43:24.580 S? Yeah. NOTE Paragraph 00:43:24.580 --> 00:43:27.780 S? I'm Dr ..... (?) [background voices] NOTE Paragraph 00:43:27.780 --> 00:43:33.487 S? Without a clear and full introduction, we may not realize 00:43:33.760 --> 00:43:35.934 the purpose of the appointment. NOTE Paragraph 00:43:39.213 --> 00:43:41.795 S? No I'm not I'm not really seeing anything, 00:43:41.795 --> 00:43:43.640 there there's no results back just yet NOTE Paragraph 00:43:45.245 --> 00:43:50.625 S? Poor positioning can hinder effective communication with us 00:43:50.810 --> 00:43:56.194 (Indistinct background voices) ... Not to good we'll maybe ... NOTE Paragraph 00:43:56.289 --> 00:44:04.383 S? Asking us repetitive questions without context can make us feel 00:44:04.383 --> 00:44:07.234 like we are being tested. 00:44:09.112 --> 00:44:13.698 Speaking to a carer instead of directly to us 00:44:14.461 --> 00:44:18.079 shows a presumption about our capacity. NOTE Paragraph 00:44:18.969 --> 00:44:23.977 S? The following scene is based on our real life experiences 00:44:23.977 --> 00:44:27.972 of positive healthcare interactions NOTE Paragraph 00:44:28.010 --> 00:44:40.023 [Indistinct voices] 00:44:40.368 --> 00:45:03.161 [Music] NOTE Paragraph 00:45:03.300 --> 00:45:05.460 S? The consultant comes to see about things (?) 00:45:05.460 --> 00:45:09.680 And I'll fix this across the H S? yeah S? all right? (?) 00:45:12.454 --> 00:45:15.359 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