1 00:00:04,560 --> 00:00:08,240 I won't lie I was terrified when the 2 00:00:08,240 --> 00:00:11,920 doctor said those words my feet went 3 00:00:11,920 --> 00:00:15,280 from beneath me could not believe what I 4 00:00:15,280 --> 00:00:19,720 just heard if I Jud my condition from 5 00:00:19,720 --> 00:00:25,560 what I saw on television I give 6 00:00:27,160 --> 00:00:28,960 up 7 00:00:28,960 --> 00:00:32,880 944 ,000 people are estimated to be 8 00:00:32,880 --> 00:00:36,300 currently living with dementia in the 9 00:00:36,300 --> 00:00:40,520 [Music] 10 00:00:40,520 --> 00:00:44,000 UK dementia killed almost double the 11 00:00:44,000 --> 00:00:48,360 number of women than men in 12 00:00:48,360 --> 00:00:52,480 [Music] 13 00:00:52,480 --> 00:00:56,039 2020 D menure has been the leading cause 14 00:00:56,039 --> 00:01:01,160 of death in women since 2011 15 00:01:01,940 --> 00:01:04,640 [Music] 16 00:01:04,640 --> 00:01:09,370 9% of people over 65 have 17 00:01:09,370 --> 00:01:17,059 [Music] 18 00:01:17,439 --> 00:01:22,079 dementia dementia will impact 50% of us 19 00:01:22,079 --> 00:01:24,840 either through a personal diagnosis or 20 00:01:24,840 --> 00:01:29,680 by caring for someone who has it 21 00:01:32,330 --> 00:01:35,480 [Music] 22 00:01:35,600 --> 00:01:39,280 1.6 million people will be living with 23 00:01:39,280 --> 00:01:43,520 dementia in the UK by 24 00:01:43,920 --> 00:01:47,880 [Music] 25 00:01:47,880 --> 00:01:51,560 2040 dementia is the most feared health 26 00:01:51,560 --> 00:01:57,750 condition by 60% of people over 65 27 00:01:57,750 --> 00:02:04,449 [Music] 28 00:02:05,880 --> 00:02:09,119 dementia care costs in Northern Ireland 29 00:02:09,119 --> 00:02:12,239 are projected to increase 30 00:02:12,239 --> 00:02:17,840 192% from 800 million in 2019 to 2.4 31 00:02:17,840 --> 00:02:22,040 billion in 2040 32 00:02:30,560 --> 00:02:34,319 wayf finding in unfamiliar places can be 33 00:02:34,319 --> 00:02:38,879 more challenging for people living with 34 00:02:40,000 --> 00:02:43,560 dementia environment may affect people 35 00:02:43,560 --> 00:02:47,720 living with dementia more than 36 00:02:48,000 --> 00:02:51,800 most noisy and chaotic spaces can feel 37 00:02:51,800 --> 00:02:54,640 disorientating and overwhelming may 38 00:02:54,640 --> 00:02:57,599 increase anxiety or frustration causing 39 00:02:57,599 --> 00:03:01,519 changes in Behavior 40 00:03:02,360 --> 00:03:06,080 everyday life for people living with 41 00:03:06,080 --> 00:03:08,360 dementia can be 42 00:03:08,360 --> 00:03:11,040 exhausting though it may not be obvious 43 00:03:11,040 --> 00:03:14,360 to you it takes longer for people living 44 00:03:14,360 --> 00:03:17,680 with dementia to process 45 00:03:17,680 --> 00:03:20,599 information our brains have to work 46 00:03:20,599 --> 00:03:24,120 harder to filter out external 47 00:03:24,120 --> 00:03:27,720 stimuli often leaving us feeling 48 00:03:27,720 --> 00:03:30,640 depleted exhausted and 49 00:03:30,640 --> 00:03:33,439 spent this makes our symptoms of 50 00:03:33,439 --> 00:03:36,290 dementia more 51 00:03:36,290 --> 00:03:46,529 [Music] 52 00:03:51,040 --> 00:03:53,000 evident 53 00:03:53,000 --> 00:03:57,879 74,000 800 people are estimated to be 54 00:03:57,879 --> 00:04:02,319 living with young onset dementia in the 55 00:04:02,319 --> 00:04:05,210 UK and 56 00:04:05,210 --> 00:04:10,959 [Music] 57 00:04:10,959 --> 00:04:15,120 Ireland young onset dementia is when 58 00:04:15,120 --> 00:04:18,320 symptoms of dementia stop before the age 59 00:04:18,320 --> 00:04:19,740 of 65 60 00:04:19,740 --> 00:05:05,059 [Music] 61 00:05:06,880 --> 00:05:11,840 demena ni members formed a working group 62 00:05:11,840 --> 00:05:13,880 in 63 00:05:13,880 --> 00:05:17,600 2022 that included eight individuals 64 00:05:17,600 --> 00:05:20,600 living with dementia like 65 00:05:20,600 --> 00:05:24,800 me supported by four staff members 66 00:05:24,800 --> 00:05:28,080 working collaboratively together one 67 00:05:28,080 --> 00:05:30,520 from dementia ni 68 00:05:30,520 --> 00:05:33,680 and three from the Southern and 69 00:05:33,680 --> 00:05:38,039 Southeast Health and Social care 70 00:05:38,039 --> 00:05:41,880 trusts the members of dementia ni are 71 00:05:41,880 --> 00:05:44,240 always looking for opportunities to 72 00:05:44,240 --> 00:05:47,479 engage with hospital and social Care 73 00:05:47,479 --> 00:05:50,639 staff to describe what it's like to live 74 00:05:50,639 --> 00:05:54,560 with dementia and to share with them our 75 00:05:54,560 --> 00:05:58,479 challenges as well as ways we can best 76 00:05:58,479 --> 00:06:00,160 be supported 77 00:06:00,160 --> 00:06:04,240 in both clinical and Hospital 78 00:06:04,240 --> 00:06:07,599 environments however speaking to every 79 00:06:07,599 --> 00:06:11,919 trust member in person is an impossible 80 00:06:11,919 --> 00:06:15,360 task so we decided to create a 81 00:06:15,360 --> 00:06:18,720 documentary to help us interact with 82 00:06:18,720 --> 00:06:21,919 members of the Health and Social care 83 00:06:21,919 --> 00:06:25,800 services to help bridge this 84 00:06:25,800 --> 00:06:30,479 Gap over the course of 22 months we met 85 00:06:30,479 --> 00:06:34,160 regularly to decide the content of this 86 00:06:34,160 --> 00:06:37,840 film sharing our own personal 87 00:06:37,840 --> 00:06:40,160 experiences across the 88 00:06:40,160 --> 00:06:42,160 Spectrum both 89 00:06:42,160 --> 00:06:45,400 positive and challenging 90 00:06:45,400 --> 00:06:47,520 experiences we thought it would be 91 00:06:47,520 --> 00:06:51,639 beneficial to provide staff with 10 top 92 00:06:51,639 --> 00:06:55,599 tips for supporting people like us 93 00:06:55,599 --> 00:06:57,520 living with 94 00:06:57,520 --> 00:07:00,120 dementia we believe these these 95 00:07:00,120 --> 00:07:04,120 practices can be easily implemented 96 00:07:04,120 --> 00:07:08,440 without adding an extra burden to staff 97 00:07:08,440 --> 00:07:11,400 and will lead to an improved staff 98 00:07:11,400 --> 00:07:12,720 patient 99 00:07:12,720 --> 00:07:15,560 interaction and in the long run will 100 00:07:15,560 --> 00:07:16,960 save 101 00:07:16,960 --> 00:07:20,840 time many people have commented what is 102 00:07:20,840 --> 00:07:23,759 good for people living with dementia is 103 00:07:23,759 --> 00:07:27,759 good for everyone and we the members of 104 00:07:27,759 --> 00:07:31,240 dementia ni are sure you will find this 105 00:07:31,240 --> 00:07:34,240 to be so 106 00:07:35,800 --> 00:07:39,080 too we know you will find the following 107 00:07:39,080 --> 00:07:41,400 individual experiences 108 00:07:41,400 --> 00:07:44,599 engaging even if somewhat emotional at 109 00:07:44,599 --> 00:07:47,919 times and that you will be able to put 110 00:07:47,919 --> 00:07:52,800 some of the Practical tips into 111 00:07:57,960 --> 00:08:00,879 action I'm uh debie Michael Henny from 112 00:08:00,879 --> 00:08:03,039 County formana I was diagnosed with 113 00:08:03,039 --> 00:08:07,599 frontal temporal dementia 7 years ago uh 114 00:08:07,599 --> 00:08:09,280 I was aged 115 00:08:09,280 --> 00:08:13,440 54 I my name is Martin 116 00:08:13,440 --> 00:08:17,759 Mar my D is Alzheimer's dementia so my 117 00:08:17,759 --> 00:08:21,240 name is Peter Alexander I was born in 118 00:08:21,240 --> 00:08:24,440 England Twickenham so the good old rugby 119 00:08:24,440 --> 00:08:27,919 place my name is jar Dorne um I was 120 00:08:27,919 --> 00:08:31,120 diagnosed with the man out when I was 121 00:08:31,120 --> 00:08:34,799 61 yes I'm Christopher Higgins and my 122 00:08:34,799 --> 00:08:37,559 dementia was discovered just two years 123 00:08:37,559 --> 00:08:40,519 ago yeah my name's Allison Allison 124 00:08:40,519 --> 00:08:44,279 Bachelor uh I live in Dundonald and was 125 00:08:44,279 --> 00:08:49,240 diagnosed with Alzheimer's in April 2017 126 00:08:49,240 --> 00:08:53,399 I'm a newly diagnosed person with 127 00:08:53,399 --> 00:08:56,600 dementia my past knowledge of dementia 128 00:08:56,600 --> 00:08:59,000 was that I was a social worker in 129 00:08:59,000 --> 00:09:00,200 hospital 130 00:09:00,200 --> 00:09:03,480 hi my name is Tom Tom 131 00:09:03,480 --> 00:09:06,160 hitle and 132 00:09:06,160 --> 00:09:08,519 um I 133 00:09:08,519 --> 00:09:13,240 have uh dementia I've been diagnosed 134 00:09:13,240 --> 00:09:17,519 with uh dementia with Louis 135 00:09:17,519 --> 00:09:22,839 bodies uh that was back 136 00:09:23,480 --> 00:09:26,640 about just over a year 137 00:09:26,640 --> 00:09:30,079 now treat us with common C 138 00:09:30,079 --> 00:09:34,040 Coury treat us with respect as valued 139 00:09:34,040 --> 00:09:35,440 capable 140 00:09:35,440 --> 00:09:38,920 adults be aware of your facial 141 00:09:38,920 --> 00:09:43,360 expression tune of voice and your 142 00:09:43,360 --> 00:09:45,839 nonverbal 143 00:09:45,839 --> 00:09:48,240 communication um and when the students 144 00:09:48,240 --> 00:09:51,959 came they said oh I see here this person 145 00:09:51,959 --> 00:09:55,200 has dementia I don't know how to speak 146 00:09:55,200 --> 00:09:56,200 to 147 00:09:56,200 --> 00:09:59,040 dementia and I think that is the problem 148 00:09:59,040 --> 00:10:01,560 the think they're speaking to the 149 00:10:01,560 --> 00:10:05,120 dementia but I always said to them so 150 00:10:05,120 --> 00:10:08,640 what if they have dementia speak to the 151 00:10:08,640 --> 00:10:10,120 person 152 00:10:10,120 --> 00:10:14,279 first you will hear a little bit when 153 00:10:14,279 --> 00:10:17,920 they reply about de the way they are 154 00:10:17,920 --> 00:10:21,279 affected but just keep speaking to the 155 00:10:21,279 --> 00:10:24,560 person behind the dementia because it's 156 00:10:24,560 --> 00:10:29,440 the person you want to talk to 157 00:10:29,440 --> 00:10:34,680 basically you talk about valuing an 158 00:10:35,000 --> 00:10:37,959 individual in all those years that I 159 00:10:37,959 --> 00:10:39,800 have 160 00:10:39,800 --> 00:10:41,560 been a 161 00:10:41,560 --> 00:10:45,040 trainer in the 162 00:10:45,639 --> 00:10:49,880 trust basic 163 00:10:50,480 --> 00:10:54,800 values are the 164 00:10:57,800 --> 00:11:01,079 primary and important 165 00:11:01,079 --> 00:11:04,440 factor what I would say 166 00:11:04,440 --> 00:11:07,399 yes if I was to write a 167 00:11:07,399 --> 00:11:12,399 book from a person who has 168 00:11:12,399 --> 00:11:14,839 dementia it would be to 169 00:11:14,839 --> 00:11:17,800 say I'm hurting inside 170 00:11:17,800 --> 00:11:22,600 too I might not be able to express it 171 00:11:22,600 --> 00:11:24,920 but I'm still the same person as I was 172 00:11:24,920 --> 00:11:26,720 when I was 173 00:11:26,720 --> 00:11:30,399 younger I am still that today 174 00:11:30,399 --> 00:11:32,519 it's just that the person I am is 175 00:11:32,519 --> 00:11:34,800 getting locked away more and more inside 176 00:11:34,800 --> 00:11:38,720 me so don't treat me any differently I'm 177 00:11:38,720 --> 00:11:41,920 still the same person as I 178 00:11:41,920 --> 00:11:44,240 was even though you might have some 179 00:11:44,240 --> 00:11:45,839 preconceived 180 00:11:45,839 --> 00:11:48,560 ideas that because I got 181 00:11:48,560 --> 00:11:51,880 dementia I'm an incontinent old person 182 00:11:51,880 --> 00:11:54,839 but I'm not I was diagnosed at the age 183 00:11:54,839 --> 00:11:55,680 of 184 00:11:55,680 --> 00:11:58,680 49 and at that time I was told that I 185 00:11:58,680 --> 00:12:01,279 shouldn't work anymore and that I 186 00:12:01,279 --> 00:12:03,920 shouldn't drive anymore because of my 187 00:12:03,920 --> 00:12:06,680 judgment being 188 00:12:06,680 --> 00:12:09,000 impaired give us 189 00:12:09,000 --> 00:12:12,920 time we need more time to process than 190 00:12:12,920 --> 00:12:18,199 you allow us to respond before you move 191 00:12:18,199 --> 00:12:23,199 on don't bombard us with questions we're 192 00:12:23,199 --> 00:12:27,839 just normal human beings with um a good 193 00:12:27,839 --> 00:12:30,120 mind and just normal 194 00:12:30,120 --> 00:12:36,320 people um the Demag it do um bring up 195 00:12:36,320 --> 00:12:39,279 different 196 00:12:39,279 --> 00:12:40,800 uh 197 00:12:40,800 --> 00:12:43,560 problems you know such as such a speech 198 00:12:43,560 --> 00:12:46,279 now my speech um while I'm sitting here 199 00:12:46,279 --> 00:12:50,199 talking to you there's words just 200 00:12:50,199 --> 00:12:52,720 disappear out of my 201 00:12:52,720 --> 00:12:55,199 vocabulary and that's why you could see 202 00:12:55,199 --> 00:12:57,760 me struggling there a couple of we bits 203 00:12:57,760 --> 00:13:01,000 that's because a normal conversational 204 00:13:01,000 --> 00:13:04,560 word and whenever it disappears I have 205 00:13:04,560 --> 00:13:07,720 to fish for another word that will fit 206 00:13:07,720 --> 00:13:09,440 in slot on this 207 00:13:09,440 --> 00:13:12,480 place but your mind's going around like 208 00:13:12,480 --> 00:13:15,160 a washing machine and it it can't pick 209 00:13:15,160 --> 00:13:18,160 the words out sometimes yeah it still 210 00:13:18,160 --> 00:13:21,279 sticks with me that that day um I felt 211 00:13:21,279 --> 00:13:24,959 very rushed and uh it was very blunt um 212 00:13:24,959 --> 00:13:27,480 there's no easy way to deliver bad news 213 00:13:27,480 --> 00:13:30,639 but I I it was very very blunt I thought 214 00:13:30,639 --> 00:13:33,240 and we left with no uh no information at 215 00:13:33,240 --> 00:13:35,000 all that that Friday afternoon we went 216 00:13:35,000 --> 00:13:36,720 out for the weekend 217 00:13:36,720 --> 00:13:40,079 and with absolutely nothing I thought I 218 00:13:40,079 --> 00:13:41,720 thought it only weeks to live after that 219 00:13:41,720 --> 00:13:44,720 you know so I did and I think more time 220 00:13:44,720 --> 00:13:46,839 would have helped and maybe a bit more 221 00:13:46,839 --> 00:13:49,759 compassion with the from the 222 00:13:49,759 --> 00:13:53,079 consultant don't make assumptions about 223 00:13:53,079 --> 00:13:57,000 us don't presume you know what we want 224 00:13:57,000 --> 00:14:01,880 feel or need or what we might be able to 225 00:14:01,880 --> 00:14:07,279 understand or decide discuss it with us 226 00:14:07,279 --> 00:14:10,959 directly give our loved ones the this is 227 00:14:10,959 --> 00:14:15,079 me person centered document to help you 228 00:14:15,079 --> 00:14:17,959 care for me 229 00:14:17,959 --> 00:14:21,160 effectively yeah I had gone to a local 230 00:14:21,160 --> 00:14:22,560 an 231 00:14:22,560 --> 00:14:24,720 Department this would be a few years ago 232 00:14:24,720 --> 00:14:29,079 now and I had said to the nurse who had 233 00:14:29,079 --> 00:14:30,920 after gone through from triage you know 234 00:14:30,920 --> 00:14:33,680 been called into the back area you know 235 00:14:33,680 --> 00:14:35,800 to be waiting to be seen by a doctor and 236 00:14:35,800 --> 00:14:37,920 to have some sort of Bloods or whatever 237 00:14:37,920 --> 00:14:41,120 done and I had said to her that I had a 238 00:14:41,120 --> 00:14:44,000 dementia diagnosis and she instantly 239 00:14:44,000 --> 00:14:47,880 dismissed it and told me just tell the 240 00:14:47,880 --> 00:14:51,279 doctor and walked away and I have to say 241 00:14:51,279 --> 00:14:53,160 that put me into a bit of a panic mode 242 00:14:53,160 --> 00:14:55,000 because I sort of thought I didn't feel 243 00:14:55,000 --> 00:14:58,000 safe then uh I sort of thought I should 244 00:14:58,000 --> 00:14:59,440 have taken a way better of time time 245 00:14:59,440 --> 00:15:02,600 even just by saying okay we've taken 246 00:15:02,600 --> 00:15:04,880 note of that but if you need us to go to 247 00:15:04,880 --> 00:15:06,720 the toilet or if you need any help with 248 00:15:06,720 --> 00:15:08,560 anything you know just give one of us a 249 00:15:08,560 --> 00:15:12,199 shout but I sort of felt it wasn't taken 250 00:15:12,199 --> 00:15:15,199 seriously that it and I thought it was 251 00:15:15,199 --> 00:15:17,160 something that she did need to know you 252 00:15:17,160 --> 00:15:18,800 know I thought it was something that she 253 00:15:18,800 --> 00:15:21,920 needed to take note of and to be aware 254 00:15:21,920 --> 00:15:23,600 of 255 00:15:23,600 --> 00:15:26,320 and you know as I say I just sort of 256 00:15:26,320 --> 00:15:29,240 felt a bit more unsafe than if had have 257 00:15:29,240 --> 00:15:30,959 been given a way bit of time cuz I sort 258 00:15:30,959 --> 00:15:32,800 of thought if I need to go to the toilet 259 00:15:32,800 --> 00:15:35,279 or I need you know who do I say to I 260 00:15:35,279 --> 00:15:36,880 didn't feel after that I could say to 261 00:15:36,880 --> 00:15:39,319 any other nurse who came into to me by 262 00:15:39,319 --> 00:15:41,800 the way I have a dementia diagnosis 263 00:15:41,800 --> 00:15:45,120 because of the way she had treated 264 00:15:45,120 --> 00:15:49,839 me I learned more about 265 00:15:50,560 --> 00:15:54,720 dementia I worked with 266 00:15:54,800 --> 00:15:58,800 people who 267 00:15:59,519 --> 00:16:03,079 were true 268 00:16:03,920 --> 00:16:08,920 professionals who were truly 269 00:16:08,920 --> 00:16:12,560 impressive in their 270 00:16:13,800 --> 00:16:17,160 approaches and 271 00:16:17,519 --> 00:16:20,000 who helped 272 00:16:20,000 --> 00:16:23,399 me so 273 00:16:23,560 --> 00:16:26,839 much to 274 00:16:27,440 --> 00:16:32,319 identify what I could do as opposed to 275 00:16:32,319 --> 00:16:38,120 all the all these things that I couldn't 276 00:16:39,040 --> 00:16:42,399 do notes help us to 277 00:16:42,399 --> 00:16:45,680 remember provide written information 278 00:16:45,680 --> 00:16:49,240 using jarg andfree language to help us 279 00:16:49,240 --> 00:16:50,600 to 280 00:16:50,600 --> 00:16:54,079 understand help us to keep notes so that 281 00:16:54,079 --> 00:16:57,560 we can keep track of what is happening 282 00:16:57,560 --> 00:17:00,680 for example when I attend Ed a hospital 283 00:17:00,680 --> 00:17:03,679 I needed to meet an individual staff 284 00:17:03,679 --> 00:17:08,880 member who was fairly aware of dementia 285 00:17:08,880 --> 00:17:10,400 and helped me 286 00:17:10,400 --> 00:17:14,359 support on a regular basis throughout my 287 00:17:14,359 --> 00:17:16,839 stay especially with regards to 288 00:17:16,839 --> 00:17:19,880 explaining and noting the key aspects of 289 00:17:19,880 --> 00:17:23,760 my appointment and how to cope well in 290 00:17:23,760 --> 00:17:27,240 the ward itself 291 00:17:29,000 --> 00:17:33,160 so if you have someone 292 00:17:33,160 --> 00:17:36,559 who has 293 00:17:38,559 --> 00:17:42,360 dementia ensure 294 00:17:42,360 --> 00:17:48,600 that you are making clear to the 295 00:17:48,600 --> 00:17:53,440 individual what is being 296 00:17:53,440 --> 00:17:56,520 discussed what is 297 00:17:56,520 --> 00:18:00,520 being agreed 298 00:18:00,520 --> 00:18:04,919 and that there is someone with 299 00:18:04,919 --> 00:18:08,080 them that 300 00:18:08,080 --> 00:18:09,760 can 301 00:18:09,760 --> 00:18:13,960 either take notes for 302 00:18:13,960 --> 00:18:19,600 them if they do not have the 303 00:18:20,720 --> 00:18:24,559 ability to make 304 00:18:27,520 --> 00:18:33,120 clear and any decisions that are 305 00:18:33,919 --> 00:18:38,919 taken to make clear 306 00:18:38,919 --> 00:18:42,559 anything that has 307 00:18:44,919 --> 00:18:48,799 been that has been 308 00:18:49,320 --> 00:18:53,600 discussed environment may affect us more 309 00:18:53,600 --> 00:18:54,880 than 310 00:18:54,880 --> 00:18:59,280 you the environment we are in 311 00:18:59,280 --> 00:19:03,159 affects us more than you provide a 312 00:19:03,159 --> 00:19:06,960 calming environment and opportunities to 313 00:19:06,960 --> 00:19:10,120 engage in activities that mean something 314 00:19:10,120 --> 00:19:11,960 to 315 00:19:11,960 --> 00:19:16,679 us use person centered tools like this 316 00:19:16,679 --> 00:19:20,880 is me to find out more about me to 317 00:19:20,880 --> 00:19:25,520 tailor activities to meet my needs 318 00:19:25,520 --> 00:19:28,440 specifically designed quiet places and 319 00:19:28,440 --> 00:19:30,720 mus girls can 320 00:19:30,720 --> 00:19:33,360 help there are also important issues 321 00:19:33,360 --> 00:19:36,760 regarding how the building itself looks 322 00:19:36,760 --> 00:19:41,159 unfamiliar surroundings noises and busy 323 00:19:41,159 --> 00:19:44,320 unclear spaces can be challenging and 324 00:19:44,320 --> 00:19:46,600 lead the agitation and 325 00:19:46,600 --> 00:19:49,280 confusion it's important for a dimension 326 00:19:49,280 --> 00:19:52,039 person to have an individual space away 327 00:19:52,039 --> 00:19:55,760 from others I think navigation and we 328 00:19:55,760 --> 00:19:58,880 finding is also important and it is help 329 00:19:58,880 --> 00:20:02,520 to have appropriate signs ideally they 330 00:20:02,520 --> 00:20:05,720 should be slightly large with clear 331 00:20:05,720 --> 00:20:09,799 words placed at face level and not too 332 00:20:09,799 --> 00:20:13,440 high merals and painting can also be 333 00:20:13,440 --> 00:20:16,720 helpful ideally colors that aren't too 334 00:20:16,720 --> 00:20:20,320 dark such as red and green I recently 335 00:20:20,320 --> 00:20:25,440 found it difficult to find uh tight uh 336 00:20:25,440 --> 00:20:28,799 toilet near my bed until the Staff 337 00:20:28,799 --> 00:20:31,840 member helped me find it as it didn't 338 00:20:31,840 --> 00:20:34,960 have a sign but the biggest thing would 339 00:20:34,960 --> 00:20:37,000 be 340 00:20:37,000 --> 00:20:40,320 disorientation and confusion uh you know 341 00:20:40,320 --> 00:20:41,960 of coming out of a room and knowing 342 00:20:41,960 --> 00:20:44,360 which way to turn and what way to go and 343 00:20:44,360 --> 00:20:46,799 that's why for me sign AG is vital you 344 00:20:46,799 --> 00:20:48,919 know in all situations and if there's 345 00:20:48,919 --> 00:20:51,400 good sign AG I'm much more confident and 346 00:20:51,400 --> 00:20:53,320 and can live much more 347 00:20:53,320 --> 00:20:55,440 independently I would describe my head 348 00:20:55,440 --> 00:20:57,280 as like a washing machine you know of so 349 00:20:57,280 --> 00:20:59,320 much G through and try 350 00:20:59,320 --> 00:21:03,400 to process things you know that would be 351 00:21:03,400 --> 00:21:04,760 the biggest 352 00:21:04,760 --> 00:21:07,600 challenge it's it's even more confusing 353 00:21:07,600 --> 00:21:09,280 cuz you're already not well you know 354 00:21:09,280 --> 00:21:10,880 you're already worried about what's 355 00:21:10,880 --> 00:21:13,679 going on why you're there uh and the 356 00:21:13,679 --> 00:21:16,679 noise and you know yourself anybody is 357 00:21:16,679 --> 00:21:18,640 sort of in an particularly in an NA 358 00:21:18,640 --> 00:21:20,360 Department there's so much banging and 359 00:21:20,360 --> 00:21:23,200 cluttering and there's noise going on 360 00:21:23,200 --> 00:21:24,799 either side of you in front of you 361 00:21:24,799 --> 00:21:26,600 behind you you know there's so many 362 00:21:26,600 --> 00:21:29,840 conversations going on uh you know quite 363 00:21:29,840 --> 00:21:32,000 often you're planted quite close to the 364 00:21:32,000 --> 00:21:34,080 nursery station because there's no 365 00:21:34,080 --> 00:21:36,600 cubicles um you know and there's all the 366 00:21:36,600 --> 00:21:38,320 noise and all the movements sort going 367 00:21:38,320 --> 00:21:41,240 on that and it it can become very very 368 00:21:41,240 --> 00:21:44,880 confusing and uh you know it's a hard 369 00:21:44,880 --> 00:21:46,919 thing to process any information and 370 00:21:46,919 --> 00:21:49,840 then when they come to speak to you you 371 00:21:49,840 --> 00:21:51,559 know there's so much noise going on 372 00:21:51,559 --> 00:21:54,159 there's so much backgr noise 373 00:21:54,159 --> 00:21:56,760 and conversations going on around you 374 00:21:56,760 --> 00:21:59,000 that is hard to process what actually 375 00:21:59,000 --> 00:22:01,840 been said to you whereas again a very 376 00:22:01,840 --> 00:22:04,000 simple thing would be to have somewhere 377 00:22:04,000 --> 00:22:07,080 that once they know you have a dementia 378 00:22:07,080 --> 00:22:09,679 diagnosis and to ask the person you know 379 00:22:09,679 --> 00:22:12,360 what can we do to help and I think most 380 00:22:12,360 --> 00:22:14,120 people would say if I could have a quiet 381 00:22:14,120 --> 00:22:16,200 room to have whenever the doctor's 382 00:22:16,200 --> 00:22:20,559 talking to me I think that would make a 383 00:22:20,559 --> 00:22:22,240 big difference you know you would sort 384 00:22:22,240 --> 00:22:24,480 of know that during that important time 385 00:22:24,480 --> 00:22:25,960 when you're meant to be able to take 386 00:22:25,960 --> 00:22:29,080 information in you know that they would 387 00:22:29,080 --> 00:22:31,120 take you somewhere that that could 388 00:22:31,120 --> 00:22:35,520 happen easier than it does in the busy 389 00:22:35,520 --> 00:22:36,720 any 390 00:22:36,720 --> 00:22:39,520 Department it was again with I mention 391 00:22:39,520 --> 00:22:42,400 in hospitals it was a new hospital 392 00:22:42,400 --> 00:22:43,960 absolutely 393 00:22:43,960 --> 00:22:46,440 beautiful like an into a very Swanky 394 00:22:46,440 --> 00:22:48,400 hotel but you go in there you're not 395 00:22:48,400 --> 00:22:51,320 coming back out there is no signage 396 00:22:51,320 --> 00:22:54,960 anywhere and the every Corridor looks 397 00:22:54,960 --> 00:22:57,760 exactly the same and you sort of have to 398 00:22:57,760 --> 00:22:59,960 go up in the left and go long a bit then 399 00:22:59,960 --> 00:23:01,880 go down and a left and go long a bit and 400 00:23:01,880 --> 00:23:05,320 then come back up again you know um 401 00:23:05,320 --> 00:23:08,360 because of the waya they intertwined and 402 00:23:08,360 --> 00:23:09,960 as I say you can out have a lift but 403 00:23:09,960 --> 00:23:11,840 there's no signage to tell you to turn 404 00:23:11,840 --> 00:23:14,760 left turn right or what way to go you 405 00:23:14,760 --> 00:23:18,600 know and that was a horrible 406 00:23:18,600 --> 00:23:21,279 experience well I have had the 407 00:23:21,279 --> 00:23:26,320 experience of um going into Hospital 408 00:23:26,320 --> 00:23:28,840 under an am with an ambulance J in the 409 00:23:28,840 --> 00:23:30,080 times of 410 00:23:30,080 --> 00:23:32,520 covid 411 00:23:32,520 --> 00:23:36,200 and the ambulance team were fantastic 412 00:23:36,200 --> 00:23:39,039 cuz they were aware of my challenges 413 00:23:39,039 --> 00:23:43,600 they thought I had a triple A um but it 414 00:23:43,600 --> 00:23:46,240 actually turned out to be kidney stones 415 00:23:46,240 --> 00:23:49,120 but when they took me into the hospital 416 00:23:49,120 --> 00:23:51,480 rather than just sitting 417 00:23:51,480 --> 00:23:55,120 there in the general area they 418 00:23:55,120 --> 00:23:58,000 accelerated my Passage through to being 419 00:23:58,000 --> 00:24:01,159 on a a bed in one of the cubicles 420 00:24:01,159 --> 00:24:02,880 because they knew that with my 421 00:24:02,880 --> 00:24:07,039 behavioral variant of of of of of the 422 00:24:07,039 --> 00:24:09,880 dementia of the the FTD the frontal 423 00:24:09,880 --> 00:24:13,520 temporal dementia that my filters had 424 00:24:13,520 --> 00:24:16,919 disappeared I would say things as I felt 425 00:24:16,919 --> 00:24:20,840 about them I would swear which I 426 00:24:20,840 --> 00:24:23,559 wouldn't have done in the past but 427 00:24:23,559 --> 00:24:26,320 frustration the feeling of not being 428 00:24:26,320 --> 00:24:29,480 able to express yourself as as I once 429 00:24:29,480 --> 00:24:33,080 did these things lead to just filterless 430 00:24:33,080 --> 00:24:35,799 behaviors and it's not that you're being 431 00:24:35,799 --> 00:24:39,080 unkind or nasty to the staff it's just 432 00:24:39,080 --> 00:24:41,880 how things come across so it's important 433 00:24:41,880 --> 00:24:44,480 that the staff in that environment build 434 00:24:44,480 --> 00:24:48,240 a rapport with the patient build the 435 00:24:48,240 --> 00:24:51,360 trust and the confidence where they can 436 00:24:51,360 --> 00:24:53,600 exchange freely and 437 00:24:53,600 --> 00:24:57,320 happily and the second time I um 438 00:24:57,320 --> 00:25:00,360 developed culat my eye and I went to the 439 00:25:00,360 --> 00:25:01,960 ation first of all it was late on in the 440 00:25:01,960 --> 00:25:05,120 evening and uh he he rang the casualty 441 00:25:05,120 --> 00:25:07,919 to say expect me so they were expecting 442 00:25:07,919 --> 00:25:09,279 it and again they knew at that time I 443 00:25:09,279 --> 00:25:11,919 was living with the Mana so the uh 444 00:25:11,919 --> 00:25:14,360 consultant actually saw me and the the 445 00:25:14,360 --> 00:25:16,360 emergency department was very busy so 446 00:25:16,360 --> 00:25:18,000 she actually took me to a very quiet 447 00:25:18,000 --> 00:25:20,440 place away from the the emergency 448 00:25:20,440 --> 00:25:23,399 department and they did all all the had 449 00:25:23,399 --> 00:25:25,000 to do at that time 450 00:25:25,000 --> 00:25:27,559 and her care and even the nursing care 451 00:25:27,559 --> 00:25:30,720 was was was was first class at that time 452 00:25:30,720 --> 00:25:33,440 with really noise and and a lot of 453 00:25:33,440 --> 00:25:36,000 people yeah I find people's faces just 454 00:25:36,000 --> 00:25:39,120 blur and the noise just it really 455 00:25:39,120 --> 00:25:41,320 scrambles my brain I can't think or 456 00:25:41,320 --> 00:25:43,520 focus on anything with with noise a 457 00:25:43,520 --> 00:25:46,240 quiet place would be ideal yeah 458 00:25:46,240 --> 00:25:50,919 yeah assume we have capacity don't make 459 00:25:50,919 --> 00:25:54,240 assumptions about our level of capacity 460 00:25:54,240 --> 00:25:57,799 or ability to engage in our care 461 00:25:57,799 --> 00:26:00,159 planning and decision 462 00:26:00,159 --> 00:26:03,559 making I may not have capacity to make 463 00:26:03,559 --> 00:26:06,640 every decision but there will be some 464 00:26:06,640 --> 00:26:11,960 decisions I can still make and want to 465 00:26:11,960 --> 00:26:16,399 make don't speak to our family members 466 00:26:16,399 --> 00:26:21,200 and ignore us speak directly to us first 467 00:26:21,200 --> 00:26:24,399 and allow us to defer to our support 468 00:26:24,399 --> 00:26:28,760 person if we need to 469 00:26:28,760 --> 00:26:31,880 ask me what you 470 00:26:31,880 --> 00:26:36,640 need what sorry I would want them to ask 471 00:26:36,640 --> 00:26:38,520 me what I needed or wanted not to 472 00:26:38,520 --> 00:26:40,440 presume they know because they might 473 00:26:40,440 --> 00:26:43,480 have had somebody in earlier that day or 474 00:26:43,480 --> 00:26:45,399 the day before or the week before with 475 00:26:45,399 --> 00:26:47,080 the dementia diagnosis he needs 476 00:26:47,080 --> 00:26:49,679 something different to what I would need 477 00:26:49,679 --> 00:26:52,000 you know so I would always say you 478 00:26:52,000 --> 00:26:55,360 know treat that person as an individual 479 00:26:55,360 --> 00:26:57,840 and find out what you can do that will 480 00:26:57,840 --> 00:27:01,279 make them them more comfortable feel 481 00:27:01,279 --> 00:27:05,200 safer and and in the turn that will ease 482 00:27:05,200 --> 00:27:07,640 your workload because if the person with 483 00:27:07,640 --> 00:27:10,120 the dementia diagnosis feels relaxed and 484 00:27:10,120 --> 00:27:14,640 feels at ease they're less likely to be 485 00:27:14,640 --> 00:27:18,520 given hustle or be kicking off about 486 00:27:18,520 --> 00:27:21,320 something I'm a sitting in the outside 487 00:27:21,320 --> 00:27:24,200 wetting room when she asked me could it 488 00:27:24,200 --> 00:27:26,080 come into the room and I SP to you if 489 00:27:26,080 --> 00:27:28,000 you want your son to come in you can 490 00:27:28,000 --> 00:27:29,559 come and I says no I'll just going 491 00:27:29,559 --> 00:27:32,120 myself and when I went into the room she 492 00:27:32,120 --> 00:27:34,320 was going shook my hand and says to me 493 00:27:34,320 --> 00:27:36,760 Martin I'm sorry to tell you I'm not 494 00:27:36,760 --> 00:27:38,760 sure the exact words but you have 495 00:27:38,760 --> 00:27:40,039 Alzheimer's 496 00:27:40,039 --> 00:27:42,720 dementia well you're you're taken back 497 00:27:42,720 --> 00:27:45,480 you're just shock she says you want me 498 00:27:45,480 --> 00:27:49,120 to get your son bring him in and I I 499 00:27:49,120 --> 00:27:52,000 says no not definitely not to my son I 500 00:27:52,000 --> 00:27:53,840 get my sons together when to go home and 501 00:27:53,840 --> 00:27:55,559 I'll tell them when to go home I got 502 00:27:55,559 --> 00:27:57,679 them settled down and things I says look 503 00:27:57,679 --> 00:28:00,240 I feel gr I still feel the same thing 504 00:28:00,240 --> 00:28:01,960 I'm still your daddy I'm still the thing 505 00:28:01,960 --> 00:28:04,720 and I'm still get carrying on and two of 506 00:28:04,720 --> 00:28:06,360 my sons are two 507 00:28:06,360 --> 00:28:10,080 M Twins and there there we go oh God not 508 00:28:10,080 --> 00:28:11,799 be able to tell him anything now not 509 00:28:11,799 --> 00:28:14,279 keep a secret he can't keep anything but 510 00:28:14,279 --> 00:28:16,919 it was it was good the experience was 511 00:28:16,919 --> 00:28:21,000 good be aware of our details don't make 512 00:28:21,000 --> 00:28:25,159 us repeat our story multiple times it 513 00:28:25,159 --> 00:28:29,080 makes us feel like we are being tested 514 00:28:29,080 --> 00:28:32,640 Ed read your colleagues assessments 515 00:28:32,640 --> 00:28:36,000 repeating information is 516 00:28:36,000 --> 00:28:40,080 exhausting for us yeah again I think 517 00:28:40,080 --> 00:28:41,640 that's it you know the nurse comes in 518 00:28:41,640 --> 00:28:43,360 you see the nurse and Tre eyes you tell 519 00:28:43,360 --> 00:28:46,120 them the story you then see whoever you 520 00:28:46,120 --> 00:28:48,600 move to into the cubicles or into the 521 00:28:48,600 --> 00:28:51,080 back bit of the any you tell them your 522 00:28:51,080 --> 00:28:53,679 story the doctor then comes in or a 523 00:28:53,679 --> 00:28:56,480 doctor comes in and you tell them it but 524 00:28:56,480 --> 00:28:58,519 there may be not the particular doctor 525 00:28:58,519 --> 00:29:00,039 you need to see if it's something 526 00:29:00,039 --> 00:29:01,840 specific you're there for you know if it 527 00:29:01,840 --> 00:29:04,600 was for example something to do with 528 00:29:04,600 --> 00:29:06,600 your heart you know you would get a 529 00:29:06,600 --> 00:29:08,399 general doctor come in talk oh you need 530 00:29:08,399 --> 00:29:10,000 to you know we need to get something 531 00:29:10,000 --> 00:29:12,159 done from Cardiology or whatever they 532 00:29:12,159 --> 00:29:13,919 can die and you have to repeat the whole 533 00:29:13,919 --> 00:29:17,200 thing again uh and that can become quite 534 00:29:17,200 --> 00:29:18,880 frustrating and you sort of think you 535 00:29:18,880 --> 00:29:21,279 know can you not read you know can you 536 00:29:21,279 --> 00:29:23,000 not actually look at the notes that have 537 00:29:23,000 --> 00:29:26,559 been taken um 10 times beforehand uh and 538 00:29:26,559 --> 00:29:28,120 you s of are they're trying to trick you 539 00:29:28,120 --> 00:29:29,880 right here you know trying to get you to 540 00:29:29,880 --> 00:29:32,120 say something different to what you had 541 00:29:32,120 --> 00:29:35,320 said before I think it is I think it's a 542 00:29:35,320 --> 00:29:38,960 challenge you know because as I say by 543 00:29:38,960 --> 00:29:40,440 you're that stage you're already in a 544 00:29:40,440 --> 00:29:43,600 real state of confusion and panic 545 00:29:43,600 --> 00:29:47,880 and um a bit more unsettled you know so 546 00:29:47,880 --> 00:29:50,559 to be asked the same story over again 547 00:29:50,559 --> 00:29:52,399 can become very frustrating and I think 548 00:29:52,399 --> 00:29:54,480 at times in I think you can become a bit 549 00:29:54,480 --> 00:29:56,320 sharper than maybe that what you would 550 00:29:56,320 --> 00:29:59,600 normally be but it's because you sort of 551 00:29:59,600 --> 00:30:01,120 you're fed up with the length of time 552 00:30:01,120 --> 00:30:02,720 you sort of have sitting there probably 553 00:30:02,720 --> 00:30:04,080 waiting anyway and you haven't seen 554 00:30:04,080 --> 00:30:05,640 anybody and then the next person come 555 00:30:05,640 --> 00:30:07,240 say ask the exactly the same question 556 00:30:07,240 --> 00:30:10,200 again you s think like this has moved on 557 00:30:10,200 --> 00:30:12,399 nowhere you know you 558 00:30:12,399 --> 00:30:14,440 haven't you know you're asking me what 559 00:30:14,440 --> 00:30:16,880 the person asked me two hours ago but 560 00:30:16,880 --> 00:30:19,159 you're doing nothing different but yes I 561 00:30:19,159 --> 00:30:21,360 think it is a challenge you know with I 562 00:30:21,360 --> 00:30:23,440 think it's a challenge for anybody but I 563 00:30:23,440 --> 00:30:24,760 think for somebody with a dementia 564 00:30:24,760 --> 00:30:26,720 diagnosis yesterday is more of a 565 00:30:26,720 --> 00:30:29,519 challenge you use Clear 566 00:30:29,519 --> 00:30:33,799 language if you are going to perform an 567 00:30:33,799 --> 00:30:36,399 intervention talk to us 568 00:30:36,399 --> 00:30:40,440 beforehand and explain each step in 569 00:30:40,440 --> 00:30:44,559 clear words or with gestures if our 570 00:30:44,559 --> 00:30:46,720 understanding is very 571 00:30:46,720 --> 00:30:48,880 limited give us 572 00:30:48,880 --> 00:30:52,799 time explaining the procedure will help 573 00:30:52,799 --> 00:30:54,960 us to 574 00:30:54,960 --> 00:30:58,320 participate if I need reassurance 575 00:30:58,320 --> 00:31:01,600 reassure me I'm not saying you have to 576 00:31:01,600 --> 00:31:04,600 have dementia to understand it what I'm 577 00:31:04,600 --> 00:31:08,679 saying is what I said to students is 578 00:31:08,679 --> 00:31:12,320 take it easy at the beginning don't 579 00:31:12,320 --> 00:31:16,200 bombard them with a rapid release of 580 00:31:16,200 --> 00:31:20,480 questions and don't L link questions 581 00:31:20,480 --> 00:31:23,480 together make the subject if it is 582 00:31:23,480 --> 00:31:25,760 driving something like 583 00:31:25,760 --> 00:31:29,120 that say are you driving your 584 00:31:29,120 --> 00:31:32,639 car wait for the answer and then if they 585 00:31:32,639 --> 00:31:36,200 say no I'm not then you can discuss it 586 00:31:36,200 --> 00:31:39,440 with them but I think if you go into 587 00:31:39,440 --> 00:31:43,639 something you know it only makes them I 588 00:31:43,639 --> 00:31:46,840 can't interrupt this but I don't agree 589 00:31:46,840 --> 00:31:50,360 with her so very gently say l thank you 590 00:31:50,360 --> 00:31:54,720 very much for coming to talk to me and I 591 00:31:54,720 --> 00:31:58,559 know very little uh about how you're 592 00:31:58,559 --> 00:32:02,320 feeling at the moment so can you tell me 593 00:32:02,320 --> 00:32:06,080 how you felt when you got your diagnosis 594 00:32:06,080 --> 00:32:09,760 what went before did you think you had 595 00:32:09,760 --> 00:32:12,639 dementia and how you felt when you 596 00:32:12,639 --> 00:32:17,320 actually were told you have 597 00:32:17,320 --> 00:32:20,440 dementia makes a 598 00:32:20,440 --> 00:32:25,000 difference Health and Social Care 599 00:32:25,000 --> 00:32:30,320 staff working with any form of 600 00:32:30,519 --> 00:32:33,519 dementia 601 00:32:33,960 --> 00:32:36,720 need to 602 00:32:36,720 --> 00:32:39,399 communicate 603 00:32:39,399 --> 00:32:42,760 clearly with any 604 00:32:42,760 --> 00:32:47,159 individual with any form of 605 00:32:47,159 --> 00:32:49,639 dementia they 606 00:32:49,639 --> 00:32:55,080 need to give clear 607 00:32:56,000 --> 00:32:58,919 instructions their need 608 00:32:58,919 --> 00:33:00,159 to 609 00:33:00,159 --> 00:33:02,080 ensure that 610 00:33:02,080 --> 00:33:05,760 people with whom they are 611 00:33:05,760 --> 00:33:07,960 working 612 00:33:07,960 --> 00:33:12,360 have a clear 613 00:33:12,360 --> 00:33:14,639 understanding of 614 00:33:14,639 --> 00:33:18,360 what is being 615 00:33:19,600 --> 00:33:25,039 discussed and that they 616 00:33:25,039 --> 00:33:29,159 have made clear 617 00:33:29,159 --> 00:33:31,279 here 618 00:33:31,279 --> 00:33:36,519 exactly what is being 619 00:33:36,799 --> 00:33:41,240 shared what is being 620 00:33:41,960 --> 00:33:46,519 said maintain our confidentiality and 621 00:33:46,519 --> 00:33:51,120 dignity share information with us 622 00:33:51,120 --> 00:33:53,919 sensitively and take into 623 00:33:53,919 --> 00:33:58,639 consideration our confidentiality 624 00:33:58,720 --> 00:34:02,080 privacy and dignity are 625 00:34:02,080 --> 00:34:05,559 important we may not want other patients 626 00:34:05,559 --> 00:34:08,918 visitors to know we have 627 00:34:08,918 --> 00:34:13,838 dementia yeah within the hold of 628 00:34:13,960 --> 00:34:17,639 dementia I find myself falling apart I 629 00:34:17,639 --> 00:34:19,879 find 630 00:34:19,879 --> 00:34:22,879 myself 631 00:34:23,960 --> 00:34:29,560 unable to be the person I was 632 00:34:29,560 --> 00:34:31,919 to 633 00:34:33,079 --> 00:34:36,000 communicate the 634 00:34:36,000 --> 00:34:40,399 way I should be able to 635 00:34:43,239 --> 00:34:45,918 communicate I 636 00:34:45,918 --> 00:34:49,158 lost my 637 00:34:49,639 --> 00:34:52,719 skills I lost a lot 638 00:34:52,719 --> 00:34:56,999 of what was 639 00:34:59,960 --> 00:35:02,880 what being 640 00:35:03,119 --> 00:35:05,280 me as a 641 00:35:05,280 --> 00:35:08,280 person 642 00:35:14,200 --> 00:35:17,320 was I 643 00:35:17,320 --> 00:35:20,720 was I was 644 00:35:22,760 --> 00:35:27,160 lost well for for myself or anybody of 645 00:35:27,160 --> 00:35:30,119 the just P his like hard if I come in as 646 00:35:30,119 --> 00:35:30,920 a 647 00:35:30,920 --> 00:35:32,960 patient they don't know why I've got the 648 00:35:32,960 --> 00:35:36,680 Mana unless I tell them I've got the 649 00:35:36,960 --> 00:35:40,480 Mana don't don't have me 650 00:35:40,480 --> 00:35:43,000 to have to say that I've got the Manion 651 00:35:43,000 --> 00:35:46,200 just treat me where courtesy of of think 652 00:35:46,200 --> 00:35:49,319 most most sitting rooms in the hospital 653 00:35:49,319 --> 00:35:51,920 you know are like they're Havoc if it 654 00:35:51,920 --> 00:35:54,800 comes to a thing many of places been in 655 00:35:54,800 --> 00:35:56,640 I've turned around and says look I'm in 656 00:35:56,640 --> 00:35:58,680 the early stages of the Mana could you 657 00:35:58,680 --> 00:36:00,480 give me a we bit of time 658 00:36:00,480 --> 00:36:04,680 here and just things get mixed up for I 659 00:36:04,680 --> 00:36:07,079 think could just if my name would come 660 00:36:07,079 --> 00:36:08,720 up in that 661 00:36:08,720 --> 00:36:12,599 computer without me having to say and 662 00:36:12,599 --> 00:36:14,480 200 people or 100 people behind me 663 00:36:14,480 --> 00:36:19,720 listening he's got the Mana list he's 664 00:36:19,720 --> 00:36:22,240 different it's different just just come 665 00:36:22,240 --> 00:36:24,240 up on the computer they made away they 666 00:36:24,240 --> 00:36:25,839 know they I've got the Mana where we're 667 00:36:25,839 --> 00:36:27,240 just talking about a blue heart or 668 00:36:27,240 --> 00:36:30,560 purple or something like that and see 669 00:36:30,560 --> 00:36:32,000 what were the attitude changes that 670 00:36:32,000 --> 00:36:35,720 those change have used are have used our 671 00:36:35,720 --> 00:36:38,319 we th card or we IDE I've used to be 672 00:36:38,319 --> 00:36:42,520 smart card not the smart card uh JN card 673 00:36:42,520 --> 00:36:45,319 I've used the JN card the difference 674 00:36:45,319 --> 00:36:47,760 those things make and change people's 675 00:36:47,760 --> 00:36:50,920 attitude it's wonderful wonderful 676 00:36:50,920 --> 00:36:53,319 provide a support 677 00:36:53,319 --> 00:36:56,640 person having a designated support 678 00:36:56,640 --> 00:37:01,160 person can help to keep us calm and 679 00:37:01,160 --> 00:37:04,960 reassured one key person who supports us 680 00:37:04,960 --> 00:37:09,079 through our stay makes a huge difference 681 00:37:09,079 --> 00:37:12,359 to our Hospital experience I had to go 682 00:37:12,359 --> 00:37:14,880 and get an operation to take out a tumor 683 00:37:14,880 --> 00:37:16,920 on my 684 00:37:16,920 --> 00:37:19,680 leg and uh it was quite difficult 685 00:37:19,680 --> 00:37:21,599 because the specialist even though she 686 00:37:21,599 --> 00:37:26,160 was uh taking the the tumor out she was 687 00:37:26,160 --> 00:37:29,000 quite um a lot of words that she was 688 00:37:29,000 --> 00:37:31,079 using was very difficult for me to 689 00:37:31,079 --> 00:37:33,000 understand because they were quite 690 00:37:33,000 --> 00:37:36,920 Technical and she then got a a a young 691 00:37:36,920 --> 00:37:40,920 nurse to come in and help me because she 692 00:37:40,920 --> 00:37:44,079 also knocked me out for six hours she 693 00:37:44,079 --> 00:37:47,040 put me asleep for 6 hours where she was 694 00:37:47,040 --> 00:37:49,640 on a lot of things she was help the the 695 00:37:49,640 --> 00:37:52,680 the other lady was helping me she met me 696 00:37:52,680 --> 00:37:56,560 I was there for about um a full full day 697 00:37:56,560 --> 00:37:57,960 overnight 698 00:37:57,960 --> 00:38:01,079 and that young lady was a major help to 699 00:38:01,079 --> 00:38:03,560 me in the hospital because she helped me 700 00:38:03,560 --> 00:38:07,319 even write down my words she helped me 701 00:38:07,319 --> 00:38:11,599 even find places and she also said uh 702 00:38:11,599 --> 00:38:14,359 even tomorrow when you go home now that 703 00:38:14,359 --> 00:38:17,119 you've been operated this is what you do 704 00:38:17,119 --> 00:38:20,440 so even though the specialist operated 705 00:38:20,440 --> 00:38:24,040 me well that lady was a massive helper 706 00:38:24,040 --> 00:38:27,160 she made the difference and I I because 707 00:38:27,160 --> 00:38:29,480 I spoke to the specialist and you even 708 00:38:29,480 --> 00:38:32,319 use my card and said I know you're going 709 00:38:32,319 --> 00:38:35,800 to help me but I've got Alzheimer's and 710 00:38:35,800 --> 00:38:38,480 I need someone to talk to me that give 711 00:38:38,480 --> 00:38:41,319 me advice and um because some of the 712 00:38:41,319 --> 00:38:43,280 things you've said you're going to do I 713 00:38:43,280 --> 00:38:46,599 haven't really understood fully what's 714 00:38:46,599 --> 00:38:48,319 going to happen or even how I help 715 00:38:48,319 --> 00:38:51,240 myself so and when that other lady came 716 00:38:51,240 --> 00:38:53,680 in she was massively helpful to me 717 00:38:53,680 --> 00:38:55,280 possibly like other people with Dem 718 00:38:55,280 --> 00:38:57,640 Mantia I find that sometimes the 719 00:38:57,640 --> 00:38:59,760 difficult to understand if I haven't 720 00:38:59,760 --> 00:39:03,760 heard about things for a while so that 721 00:39:03,760 --> 00:39:07,440 other lady was a bit more explaining and 722 00:39:07,440 --> 00:39:11,240 also helped me make notes to write down 723 00:39:11,240 --> 00:39:13,280 a great understanding of what was going 724 00:39:13,280 --> 00:39:15,119 to happen to me and particularly how I 725 00:39:15,119 --> 00:39:17,200 dealt with myself the next few days when 726 00:39:17,200 --> 00:39:19,839 I got home having that interface between 727 00:39:19,839 --> 00:39:20,680 the 728 00:39:20,680 --> 00:39:24,880 consultant and also uh uh uh uh the 729 00:39:24,880 --> 00:39:29,640 patient with that specialist nurse was 730 00:39:29,640 --> 00:39:33,400 invaluable and that I think is something 731 00:39:33,400 --> 00:39:36,680 which can be really helpful to other 732 00:39:36,680 --> 00:39:39,840 people one thing that I would insist 733 00:39:39,840 --> 00:39:41,319 [Music] 734 00:39:41,319 --> 00:39:44,880 on would be 735 00:39:44,880 --> 00:39:48,720 that I 736 00:39:49,040 --> 00:39:52,240 had someone with 737 00:39:52,240 --> 00:39:56,680 me that I trust 738 00:39:58,480 --> 00:40:01,920 someone with me 739 00:40:03,359 --> 00:40:06,359 that 740 00:40:06,560 --> 00:40:09,200 could be 741 00:40:09,200 --> 00:40:12,200 there 742 00:40:13,800 --> 00:40:17,160 to like say I would either be taking my 743 00:40:17,160 --> 00:40:19,319 own 744 00:40:19,319 --> 00:40:23,839 notes that's another thing I'd lost my 745 00:40:23,839 --> 00:40:28,400 writing skills i' had lost I mean 746 00:40:28,400 --> 00:40:32,680 as well as losing my 747 00:40:32,680 --> 00:40:35,960 verbosity I had 748 00:40:35,960 --> 00:40:40,000 lost my ability to 749 00:40:40,040 --> 00:40:44,640 write and I have been practicing 750 00:40:45,400 --> 00:40:49,560 writing just to get myself back off to 751 00:40:49,560 --> 00:40:53,040 speed to be able 752 00:40:53,040 --> 00:40:58,160 to communicate effectively 753 00:40:59,480 --> 00:41:01,000 I've also been 754 00:41:01,000 --> 00:41:04,200 reading a 755 00:41:05,960 --> 00:41:10,079 lot to try 756 00:41:10,160 --> 00:41:15,880 and ensure that my communication 757 00:41:15,960 --> 00:41:19,319 is as it should 758 00:41:19,319 --> 00:41:24,920 be as I consider it should 759 00:41:25,839 --> 00:41:30,079 be cuz I'm a hard 760 00:41:32,359 --> 00:41:35,680 Taskmaster the following scene is based 761 00:41:35,680 --> 00:41:37,839 on our real life 762 00:41:37,839 --> 00:41:41,599 experiences of poor health care 763 00:41:41,599 --> 00:41:42,830 interactions 764 00:41:42,830 --> 00:42:01,659 [Music] 765 00:42:02,760 --> 00:42:04,800 without a clear 766 00:42:04,800 --> 00:42:08,119 introduction we may feel rushed or 767 00:42:08,119 --> 00:42:11,040 panicked unsure of what is 768 00:42:11,040 --> 00:42:13,800 happening which may unnecessarily 769 00:42:13,800 --> 00:42:15,640 increase our 770 00:42:15,640 --> 00:42:19,650 anxiety and generate unexpected 771 00:42:19,650 --> 00:42:20,839 [Music] 772 00:42:20,839 --> 00:42:24,559 reactions insufficient support with wayf 773 00:42:24,559 --> 00:42:27,760 finding could leave us disoriented ated 774 00:42:27,760 --> 00:42:28,920 and 775 00:42:28,920 --> 00:42:32,359 Confused ultimately reducing our powers 776 00:42:32,359 --> 00:42:33,440 of 777 00:42:33,440 --> 00:42:35,830 concentration for the following 778 00:42:35,830 --> 00:42:37,160 [Music] 779 00:42:37,160 --> 00:42:40,599 appointment disorganized and chaotic 780 00:42:40,599 --> 00:42:44,760 clinical space may be distracting or 781 00:42:44,760 --> 00:42:48,800 overwhelming for us reducing ability to 782 00:42:48,800 --> 00:42:51,839 focus and 783 00:42:51,839 --> 00:42:55,480 communicate not explaining procedures or 784 00:42:55,480 --> 00:42:58,359 interventions clearly in advance can 785 00:42:58,359 --> 00:43:00,920 cause us upset or 786 00:43:00,920 --> 00:43:05,880 distress especially as our dementia 787 00:43:05,960 --> 00:43:09,640 advances not explaining next steps in 788 00:43:09,640 --> 00:43:12,400 advance increases our 789 00:43:12,400 --> 00:43:15,880 anxiety and 790 00:43:17,200 --> 00:43:20,300 [Music] 791 00:43:20,760 --> 00:43:23,440 confusion uh Hazel and baby is that 792 00:43:23,440 --> 00:43:25,240 right yeah I'm 793 00:43:25,240 --> 00:43:27,960 Dr tonight 794 00:43:27,960 --> 00:43:30,720 without a clear and full 795 00:43:30,720 --> 00:43:33,760 introduction we may not realize the 796 00:43:33,760 --> 00:43:35,480 purpose of the 797 00:43:35,480 --> 00:43:38,440 appointment 798 00:43:38,440 --> 00:43:41,240 um no I'm not I'm not really seeing 799 00:43:41,240 --> 00:43:43,640 anything there there's no results back 800 00:43:43,640 --> 00:43:47,839 just yet poor positioning can hinder 801 00:43:47,839 --> 00:43:51,520 effective communication with 802 00:43:51,520 --> 00:43:54,520 us not to 803 00:43:54,520 --> 00:43:59,319 good we'll maybe asking as repetitive 804 00:43:59,319 --> 00:44:01,640 questions without 805 00:44:01,640 --> 00:44:05,559 context can make us feel like we are 806 00:44:05,559 --> 00:44:08,040 being 807 00:44:08,319 --> 00:44:12,240 tested speaking to a carer instead of 808 00:44:12,240 --> 00:44:16,720 directly to us shows a presumption about 809 00:44:16,720 --> 00:44:18,079 our 810 00:44:18,079 --> 00:44:21,640 capacity the following scene is based on 811 00:44:21,640 --> 00:44:25,599 our real life experiences of positive 812 00:44:25,599 --> 00:44:29,040 healthc care interaction 813 00:44:30,370 --> 00:44:33,240 [Music] 814 00:44:33,240 --> 00:44:36,480 thank you 815 00:44:39,900 --> 00:45:03,800 [Music] 816 00:45:03,800 --> 00:45:05,440 the consultant comes okay and I'll F 817 00:45:05,440 --> 00:45:09,680 this across the H yeah all 818 00:45:12,040 --> 00:45:15,359 right there we go like the wait the 819 00:45:15,359 --> 00:45:16,960 consultant will be right in through the 820 00:45:16,960 --> 00:45:21,079 door thank you 821 00:45:28,040 --> 00:45:30,400 how are you I'm Dr sville I'm one of the 822 00:45:30,400 --> 00:45:33,119 Consultants it's nice to meet you it's 823 00:45:33,119 --> 00:45:35,240 Davey is that right Dave yeah Davey I I 824 00:45:35,240 --> 00:45:37,440 haven't met you before um I understand 825 00:45:37,440 --> 00:45:39,040 that you're you're here to talk about 826 00:45:39,040 --> 00:45:40,640 some results that's right is that 827 00:45:40,640 --> 00:45:43,599 correct be okay yeah sure I I haven't 828 00:45:43,599 --> 00:45:46,160 been to doing too bad been keeping busy 829 00:45:46,160 --> 00:45:47,559 and very 830 00:45:47,559 --> 00:45:52,079 active so I do and uh yeah just keep 831 00:45:52,079 --> 00:45:54,359 keep busy okay okay how have you been 832 00:45:54,359 --> 00:45:57,119 sleeping recently sleep's been a bit on 833 00:45:57,119 --> 00:46:01,200 off um but uh I always get caught up 834 00:46:01,200 --> 00:46:03,160 sometimes away quite early right but uh 835 00:46:03,160 --> 00:46:05,760 I can get caught up the next night okay 836 00:46:05,760 --> 00:46:07,800 and what time would you go to bed at 837 00:46:07,800 --> 00:46:11,440 roughly normally try half time 11:00 um 838 00:46:11,440 --> 00:46:13,839 probably a bit overeen of anything right 839 00:46:13,839 --> 00:46:16,240 I started sweet stuff I Can't Get Enough 840 00:46:16,240 --> 00:46:19,200 at the whatever's uh going on you know 841 00:46:19,200 --> 00:46:21,960 right okay and then just about some of 842 00:46:21,960 --> 00:46:24,760 your medications um has anything changed 843 00:46:24,760 --> 00:46:27,440 recently at all no they've kept it 844 00:46:27,440 --> 00:46:30,280 they kept the medication as it is right 845 00:46:30,280 --> 00:46:32,000 we can maybe spend a bit more time 846 00:46:32,000 --> 00:46:34,240 looking at well really not not too bad 847 00:46:34,240 --> 00:46:36,599 just how how how do you see things 848 00:46:36,599 --> 00:46:40,200 progressing for for myself okay okay so 849 00:46:40,200 --> 00:46:42,680 if you've got that Rapport it makes a 850 00:46:42,680 --> 00:46:45,920 real difference and show appreciation 851 00:46:45,920 --> 00:46:49,760 cuz the staff do an amazing thing and in 852 00:46:49,760 --> 00:46:52,520 very difficult environment and I have to 853 00:46:52,520 --> 00:46:55,760 say thank you to the nursing staff and 854 00:46:55,760 --> 00:46:58,440 to the medics who do take such good care 855 00:46:58,440 --> 00:46:59,319 of 856 00:46:59,319 --> 00:47:02,400 us thank you for staying with us 857 00:47:02,400 --> 00:47:04,200 throughout this 858 00:47:04,200 --> 00:47:07,079 documentary we hope it has provided you 859 00:47:07,079 --> 00:47:10,119 with a deeper understanding of what it 860 00:47:10,119 --> 00:47:13,559 is like to live with dementia and has 861 00:47:13,559 --> 00:47:17,160 offered practical tips that you can now 862 00:47:17,160 --> 00:47:18,680 put into 863 00:47:18,680 --> 00:47:22,720 practice finally a big thank you from 864 00:47:22,720 --> 00:47:25,880 all the members at dementa ni for the 865 00:47:25,880 --> 00:47:27,559 work that you do 866 00:47:27,559 --> 00:47:30,880 that has a positive impact on the daily 867 00:47:30,880 --> 00:47:33,880 lives of real people like 868 00:47:33,880 --> 00:47:37,160 us matter have to assume we have 869 00:47:37,160 --> 00:47:40,480 capacity mhm is that the size of my 870 00:47:40,480 --> 00:47:44,359 bladder the size of my 871 00:47:50,160 --> 00:47:54,200 nose those words my feet went from 872 00:47:54,200 --> 00:47:58,839 beneath me could not believe what I 873 00:47:59,180 --> 00:48:00,800 [Music] 874 00:48:00,800 --> 00:48:03,359 I I 875 00:48:03,359 --> 00:48:06,720 saw I 876 00:48:09,559 --> 00:48:15,400 give it's a slippy R but I keep my feet 877 00:48:15,400 --> 00:48:19,359 bled I have the strength to hold the C 878 00:48:19,359 --> 00:48:21,559 I've been 879 00:48:21,559 --> 00:48:25,800 handed If I Stumble if my feet fall or 880 00:48:25,800 --> 00:48:27,680 if I need 881 00:48:27,680 --> 00:48:31,880 assistance I know the journey is long 882 00:48:31,880 --> 00:48:36,040 but it's so wor 883 00:48:36,040 --> 00:48:39,880 that my voice is mind I don't need 884 00:48:39,880 --> 00:48:43,800 someone to say what's on my mind though 885 00:48:43,800 --> 00:48:47,480 the love I have to help me is the best 886 00:48:47,480 --> 00:48:51,400 that you could find and I worry for my 887 00:48:51,400 --> 00:48:55,559 loved ones cuz the future is so wonder I 888 00:48:55,559 --> 00:48:58,720 stay strong 889 00:49:01,520 --> 00:49:02,200 it's 890 00:49:02,200 --> 00:49:06,240 ay but I keep 891 00:49:06,400 --> 00:49:10,359 my I have the strength to hold the C 892 00:49:10,359 --> 00:49:12,559 I've been 893 00:49:12,559 --> 00:49:17,400 handed If I Stumble my feet fall or if I 894 00:49:17,400 --> 00:49:21,480 need some assistance I know the journey 895 00:49:21,480 --> 00:49:23,040 long 896 00:49:23,040 --> 00:49:28,000 but it's the wor that distance 897 00:49:28,000 --> 00:49:33,079 [Music] 898 00:49:35,880 --> 00:49:39,559 [Music] 899 00:49:39,559 --> 00:49:41,200 I found my 900 00:49:41,200 --> 00:49:44,240 place surrounded by 901 00:49:44,240 --> 00:49:49,400 faces who understand 902 00:49:50,040 --> 00:49:53,200 me our worries and 903 00:49:53,200 --> 00:49:58,640 fears so disappear after 904 00:49:59,140 --> 00:50:02,079 [Music] 905 00:50:02,079 --> 00:50:07,559 Aver and a warm cup of tea