WEBVTT 00:00:04.560 --> 00:00:08.240 I won't lie I was terrified when the 00:00:08.240 --> 00:00:11.920 doctor said those words my feet went 00:00:11.920 --> 00:00:15.280 from beneath me could not believe what I 00:00:15.280 --> 00:00:19.720 just heard if I Jud my condition from 00:00:19.720 --> 00:00:25.560 what I saw on television I give 00:00:27.160 --> 00:00:28.960 up 00:00:28.960 --> 00:00:32.880 944 ,000 people are estimated to be 00:00:32.880 --> 00:00:36.300 currently living with dementia in the 00:00:36.300 --> 00:00:40.520 [Music] 00:00:40.520 --> 00:00:44.000 UK dementia killed almost double the 00:00:44.000 --> 00:00:48.360 number of women than men in 00:00:48.360 --> 00:00:52.480 [Music] 00:00:52.480 --> 00:00:56.039 2020 D menure has been the leading cause 00:00:56.039 --> 00:01:01.160 of death in women since 2011 00:01:01.940 --> 00:01:04.640 [Music] 00:01:04.640 --> 00:01:09.370 9% of people over 65 have 00:01:09.370 --> 00:01:17.059 [Music] 00:01:17.439 --> 00:01:22.079 dementia dementia will impact 50% of us 00:01:22.079 --> 00:01:24.840 either through a personal diagnosis or 00:01:24.840 --> 00:01:29.680 by caring for someone who has it 00:01:32.330 --> 00:01:35.480 [Music] 00:01:35.600 --> 00:01:39.280 1.6 million people will be living with 00:01:39.280 --> 00:01:43.520 dementia in the UK by 00:01:43.920 --> 00:01:47.880 [Music] 00:01:47.880 --> 00:01:51.560 2040 dementia is the most feared health 00:01:51.560 --> 00:01:57.750 condition by 60% of people over 65 00:01:57.750 --> 00:02:04.449 [Music] 00:02:05.880 --> 00:02:09.119 dementia care costs in Northern Ireland 00:02:09.119 --> 00:02:12.239 are projected to increase 00:02:12.239 --> 00:02:17.840 192% from 800 million in 2019 to 2.4 00:02:17.840 --> 00:02:22.040 billion in 2040 00:02:30.560 --> 00:02:34.319 wayf finding in unfamiliar places can be 00:02:34.319 --> 00:02:38.879 more challenging for people living with 00:02:40.000 --> 00:02:43.560 dementia environment may affect people 00:02:43.560 --> 00:02:47.720 living with dementia more than 00:02:48.000 --> 00:02:51.800 most noisy and chaotic spaces can feel 00:02:51.800 --> 00:02:54.640 disorientating and overwhelming may 00:02:54.640 --> 00:02:57.599 increase anxiety or frustration causing 00:02:57.599 --> 00:03:01.519 changes in Behavior 00:03:02.360 --> 00:03:06.080 everyday life for people living with 00:03:06.080 --> 00:03:08.360 dementia can be 00:03:08.360 --> 00:03:11.040 exhausting though it may not be obvious 00:03:11.040 --> 00:03:14.360 to you it takes longer for people living 00:03:14.360 --> 00:03:17.680 with dementia to process 00:03:17.680 --> 00:03:20.599 information our brains have to work 00:03:20.599 --> 00:03:24.120 harder to filter out external 00:03:24.120 --> 00:03:27.720 stimuli often leaving us feeling 00:03:27.720 --> 00:03:30.640 depleted exhausted and 00:03:30.640 --> 00:03:33.439 spent this makes our symptoms of 00:03:33.439 --> 00:03:36.290 dementia more 00:03:36.290 --> 00:03:46.529 [Music] 00:03:51.040 --> 00:03:53.000 evident 00:03:53.000 --> 00:03:57.879 74,000 800 people are estimated to be 00:03:57.879 --> 00:04:02.319 living with young onset dementia in the 00:04:02.319 --> 00:04:05.210 UK and 00:04:05.210 --> 00:04:10.959 [Music] 00:04:10.959 --> 00:04:15.120 Ireland young onset dementia is when 00:04:15.120 --> 00:04:18.320 symptoms of dementia stop before the age 00:04:18.320 --> 00:04:19.740 of 65 00:04:19.740 --> 00:05:05.059 [Music] 00:05:06.880 --> 00:05:11.840 demena ni members formed a working group 00:05:11.840 --> 00:05:13.880 in 00:05:13.880 --> 00:05:17.600 2022 that included eight individuals 00:05:17.600 --> 00:05:20.600 living with dementia like 00:05:20.600 --> 00:05:24.800 me supported by four staff members 00:05:24.800 --> 00:05:28.080 working collaboratively together one 00:05:28.080 --> 00:05:30.520 from dementia ni 00:05:30.520 --> 00:05:33.680 and three from the Southern and 00:05:33.680 --> 00:05:38.039 Southeast Health and Social care 00:05:38.039 --> 00:05:41.880 trusts the members of dementia ni are 00:05:41.880 --> 00:05:44.240 always looking for opportunities to 00:05:44.240 --> 00:05:47.479 engage with hospital and social Care 00:05:47.479 --> 00:05:50.639 staff to describe what it's like to live 00:05:50.639 --> 00:05:54.560 with dementia and to share with them our 00:05:54.560 --> 00:05:58.479 challenges as well as ways we can best 00:05:58.479 --> 00:06:00.160 be supported 00:06:00.160 --> 00:06:04.240 in both clinical and Hospital 00:06:04.240 --> 00:06:07.599 environments however speaking to every 00:06:07.599 --> 00:06:11.919 trust member in person is an impossible 00:06:11.919 --> 00:06:15.360 task so we decided to create a 00:06:15.360 --> 00:06:18.720 documentary to help us interact with 00:06:18.720 --> 00:06:21.919 members of the Health and Social care 00:06:21.919 --> 00:06:25.800 services to help bridge this 00:06:25.800 --> 00:06:30.479 Gap over the course of 22 months we met 00:06:30.479 --> 00:06:34.160 regularly to decide the content of this 00:06:34.160 --> 00:06:37.840 film sharing our own personal 00:06:37.840 --> 00:06:40.160 experiences across the 00:06:40.160 --> 00:06:42.160 Spectrum both 00:06:42.160 --> 00:06:45.400 positive and challenging 00:06:45.400 --> 00:06:47.520 experiences we thought it would be 00:06:47.520 --> 00:06:51.639 beneficial to provide staff with 10 top 00:06:51.639 --> 00:06:55.599 tips for supporting people like us 00:06:55.599 --> 00:06:57.520 living with 00:06:57.520 --> 00:07:00.120 dementia we believe these these 00:07:00.120 --> 00:07:04.120 practices can be easily implemented 00:07:04.120 --> 00:07:08.440 without adding an extra burden to staff 00:07:08.440 --> 00:07:11.400 and will lead to an improved staff 00:07:11.400 --> 00:07:12.720 patient 00:07:12.720 --> 00:07:15.560 interaction and in the long run will 00:07:15.560 --> 00:07:16.960 save 00:07:16.960 --> 00:07:20.840 time many people have commented what is 00:07:20.840 --> 00:07:23.759 good for people living with dementia is 00:07:23.759 --> 00:07:27.759 good for everyone and we the members of 00:07:27.759 --> 00:07:31.240 dementia ni are sure you will find this 00:07:31.240 --> 00:07:34.240 to be so 00:07:35.800 --> 00:07:39.080 too we know you will find the following 00:07:39.080 --> 00:07:41.400 individual experiences 00:07:41.400 --> 00:07:44.599 engaging even if somewhat emotional at 00:07:44.599 --> 00:07:47.919 times and that you will be able to put 00:07:47.919 --> 00:07:52.800 some of the Practical tips into 00:07:57.960 --> 00:08:00.879 action I'm uh debie Michael Henny from 00:08:00.879 --> 00:08:03.039 County formana I was diagnosed with 00:08:03.039 --> 00:08:07.599 frontal temporal dementia 7 years ago uh 00:08:07.599 --> 00:08:09.280 I was aged 00:08:09.280 --> 00:08:13.440 54 I my name is Martin 00:08:13.440 --> 00:08:17.759 Mar my D is Alzheimer's dementia so my 00:08:17.759 --> 00:08:21.240 name is Peter Alexander I was born in 00:08:21.240 --> 00:08:24.440 England Twickenham so the good old rugby 00:08:24.440 --> 00:08:27.919 place my name is jar Dorne um I was 00:08:27.919 --> 00:08:31.120 diagnosed with the man out when I was 00:08:31.120 --> 00:08:34.799 61 yes I'm Christopher Higgins and my 00:08:34.799 --> 00:08:37.559 dementia was discovered just two years 00:08:37.559 --> 00:08:40.519 ago yeah my name's Allison Allison 00:08:40.519 --> 00:08:44.279 Bachelor uh I live in Dundonald and was 00:08:44.279 --> 00:08:49.240 diagnosed with Alzheimer's in April 2017 00:08:49.240 --> 00:08:53.399 I'm a newly diagnosed person with 00:08:53.399 --> 00:08:56.600 dementia my past knowledge of dementia 00:08:56.600 --> 00:08:59.000 was that I was a social worker in 00:08:59.000 --> 00:09:00.200 hospital 00:09:00.200 --> 00:09:03.480 hi my name is Tom Tom 00:09:03.480 --> 00:09:06.160 hitle and 00:09:06.160 --> 00:09:08.519 um I 00:09:08.519 --> 00:09:13.240 have uh dementia I've been diagnosed 00:09:13.240 --> 00:09:17.519 with uh dementia with Louis 00:09:17.519 --> 00:09:22.839 bodies uh that was back 00:09:23.480 --> 00:09:26.640 about just over a year 00:09:26.640 --> 00:09:30.079 now treat us with common C 00:09:30.079 --> 00:09:34.040 Coury treat us with respect as valued 00:09:34.040 --> 00:09:35.440 capable 00:09:35.440 --> 00:09:38.920 adults be aware of your facial 00:09:38.920 --> 00:09:43.360 expression tune of voice and your 00:09:43.360 --> 00:09:45.839 nonverbal 00:09:45.839 --> 00:09:48.240 communication um and when the students 00:09:48.240 --> 00:09:51.959 came they said oh I see here this person 00:09:51.959 --> 00:09:55.200 has dementia I don't know how to speak 00:09:55.200 --> 00:09:56.200 to 00:09:56.200 --> 00:09:59.040 dementia and I think that is the problem 00:09:59.040 --> 00:10:01.560 the think they're speaking to the 00:10:01.560 --> 00:10:05.120 dementia but I always said to them so 00:10:05.120 --> 00:10:08.640 what if they have dementia speak to the 00:10:08.640 --> 00:10:10.120 person 00:10:10.120 --> 00:10:14.279 first you will hear a little bit when 00:10:14.279 --> 00:10:17.920 they reply about de the way they are 00:10:17.920 --> 00:10:21.279 affected but just keep speaking to the 00:10:21.279 --> 00:10:24.560 person behind the dementia because it's 00:10:24.560 --> 00:10:29.440 the person you want to talk to 00:10:29.440 --> 00:10:34.680 basically you talk about valuing an 00:10:35.000 --> 00:10:37.959 individual in all those years that I 00:10:37.959 --> 00:10:39.800 have 00:10:39.800 --> 00:10:41.560 been a 00:10:41.560 --> 00:10:45.040 trainer in the 00:10:45.639 --> 00:10:49.880 trust basic 00:10:50.480 --> 00:10:54.800 values are the 00:10:57.800 --> 00:11:01.079 primary and important 00:11:01.079 --> 00:11:04.440 factor what I would say 00:11:04.440 --> 00:11:07.399 yes if I was to write a 00:11:07.399 --> 00:11:12.399 book from a person who has 00:11:12.399 --> 00:11:14.839 dementia it would be to 00:11:14.839 --> 00:11:17.800 say I'm hurting inside 00:11:17.800 --> 00:11:22.600 too I might not be able to express it 00:11:22.600 --> 00:11:24.920 but I'm still the same person as I was 00:11:24.920 --> 00:11:26.720 when I was 00:11:26.720 --> 00:11:30.399 younger I am still that today 00:11:30.399 --> 00:11:32.519 it's just that the person I am is 00:11:32.519 --> 00:11:34.800 getting locked away more and more inside 00:11:34.800 --> 00:11:38.720 me so don't treat me any differently I'm 00:11:38.720 --> 00:11:41.920 still the same person as I 00:11:41.920 --> 00:11:44.240 was even though you might have some 00:11:44.240 --> 00:11:45.839 preconceived 00:11:45.839 --> 00:11:48.560 ideas that because I got 00:11:48.560 --> 00:11:51.880 dementia I'm an incontinent old person 00:11:51.880 --> 00:11:54.839 but I'm not I was diagnosed at the age 00:11:54.839 --> 00:11:55.680 of 00:11:55.680 --> 00:11:58.680 49 and at that time I was told that I 00:11:58.680 --> 00:12:01.279 shouldn't work anymore and that I 00:12:01.279 --> 00:12:03.920 shouldn't drive anymore because of my 00:12:03.920 --> 00:12:06.680 judgment being 00:12:06.680 --> 00:12:09.000 impaired give us 00:12:09.000 --> 00:12:12.920 time we need more time to process than 00:12:12.920 --> 00:12:18.199 you allow us to respond before you move 00:12:18.199 --> 00:12:23.199 on don't bombard us with questions we're 00:12:23.199 --> 00:12:27.839 just normal human beings with um a good 00:12:27.839 --> 00:12:30.120 mind and just normal 00:12:30.120 --> 00:12:36.320 people um the Demag it do um bring up 00:12:36.320 --> 00:12:39.279 different 00:12:39.279 --> 00:12:40.800 uh 00:12:40.800 --> 00:12:43.560 problems you know such as such a speech 00:12:43.560 --> 00:12:46.279 now my speech um while I'm sitting here 00:12:46.279 --> 00:12:50.199 talking to you there's words just 00:12:50.199 --> 00:12:52.720 disappear out of my 00:12:52.720 --> 00:12:55.199 vocabulary and that's why you could see 00:12:55.199 --> 00:12:57.760 me struggling there a couple of we bits 00:12:57.760 --> 00:13:01.000 that's because a normal conversational 00:13:01.000 --> 00:13:04.560 word and whenever it disappears I have 00:13:04.560 --> 00:13:07.720 to fish for another word that will fit 00:13:07.720 --> 00:13:09.440 in slot on this 00:13:09.440 --> 00:13:12.480 place but your mind's going around like 00:13:12.480 --> 00:13:15.160 a washing machine and it it can't pick 00:13:15.160 --> 00:13:18.160 the words out sometimes yeah it still 00:13:18.160 --> 00:13:21.279 sticks with me that that day um I felt 00:13:21.279 --> 00:13:24.959 very rushed and uh it was very blunt um 00:13:24.959 --> 00:13:27.480 there's no easy way to deliver bad news 00:13:27.480 --> 00:13:30.639 but I I it was very very blunt I thought 00:13:30.639 --> 00:13:33.240 and we left with no uh no information at 00:13:33.240 --> 00:13:35.000 all that that Friday afternoon we went 00:13:35.000 --> 00:13:36.720 out for the weekend 00:13:36.720 --> 00:13:40.079 and with absolutely nothing I thought I 00:13:40.079 --> 00:13:41.720 thought it only weeks to live after that 00:13:41.720 --> 00:13:44.720 you know so I did and I think more time 00:13:44.720 --> 00:13:46.839 would have helped and maybe a bit more 00:13:46.839 --> 00:13:49.759 compassion with the from the 00:13:49.759 --> 00:13:53.079 consultant don't make assumptions about 00:13:53.079 --> 00:13:57.000 us don't presume you know what we want 00:13:57.000 --> 00:14:01.880 feel or need or what we might be able to 00:14:01.880 --> 00:14:07.279 understand or decide discuss it with us 00:14:07.279 --> 00:14:10.959 directly give our loved ones the this is 00:14:10.959 --> 00:14:15.079 me person centered document to help you 00:14:15.079 --> 00:14:17.959 care for me 00:14:17.959 --> 00:14:21.160 effectively yeah I had gone to a local 00:14:21.160 --> 00:14:22.560 an 00:14:22.560 --> 00:14:24.720 Department this would be a few years ago 00:14:24.720 --> 00:14:29.079 now and I had said to the nurse who had 00:14:29.079 --> 00:14:30.920 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 --> 00:14:35.800 to be waiting to be seen by a doctor and 00:14:35.800 --> 00:14:37.920 to have some sort of Bloods or whatever 00:14:37.920 --> 00:14:41.120 done and I had said to her that I had a 00:14:41.120 --> 00:14:44.000 dementia diagnosis and she instantly 00:14:44.000 --> 00:14:47.880 dismissed it and told me just tell the 00:14:47.880 --> 00:14:51.279 doctor and walked away and I have to say 00:14:51.279 --> 00:14:53.160 that put me into a bit of a panic mode 00:14:53.160 --> 00:14:55.000 because I sort of thought I didn't feel 00:14:55.000 --> 00:14:58.000 safe then uh I sort of thought I should 00:14:58.000 --> 00:14:59.440 have taken a way better of time time 00:14:59.440 --> 00:15:02.600 even just by saying okay we've taken 00:15:02.600 --> 00:15:04.880 note of that but if you need us to go to 00:15:04.880 --> 00:15:06.720 the toilet or if you need any help with 00:15:06.720 --> 00:15:08.560 anything you know just give one of us a 00:15:08.560 --> 00:15:12.199 shout but I sort of felt it wasn't taken 00:15:12.199 --> 00:15:15.199 seriously that it and I thought it was 00:15:15.199 --> 00:15:17.160 something that she did need to know you 00:15:17.160 --> 00:15:18.800 know I thought it was something that she 00:15:18.800 --> 00:15:21.920 needed to take note of and to be aware 00:15:21.920 --> 00:15:23.600 of 00:15:23.600 --> 00:15:26.320 and you know as I say I just sort of 00:15:26.320 --> 00:15:29.240 felt a bit more unsafe than if had have 00:15:29.240 --> 00:15:30.959 been given a way bit of time cuz I sort 00:15:30.959 --> 00:15:32.800 of thought if I need to go to the toilet 00:15:32.800 --> 00:15:35.279 or I need you know who do I say to I 00:15:35.279 --> 00:15:36.880 didn't feel after that I could say to 00:15:36.880 --> 00:15:39.319 any other nurse who came into to me by 00:15:39.319 --> 00:15:41.800 the way I have a dementia diagnosis 00:15:41.800 --> 00:15:45.120 because of the way she had treated 00:15:45.120 --> 00:15:49.839 me I learned more about 00:15:50.560 --> 00:15:54.720 dementia I worked with 00:15:54.800 --> 00:15:58.800 people who 00:15:59.519 --> 00:16:03.079 were true 00:16:03.920 --> 00:16:08.920 professionals who were truly 00:16:08.920 --> 00:16:12.560 impressive in their 00:16:13.800 --> 00:16:17.160 approaches and 00:16:17.519 --> 00:16:20.000 who helped 00:16:20.000 --> 00:16:23.399 me so 00:16:23.560 --> 00:16:26.839 much to 00:16:27.440 --> 00:16:32.319 identify what I could do as opposed to 00:16:32.319 --> 00:16:38.120 all the all these things that I couldn't 00:16:39.040 --> 00:16:42.399 do notes help us to 00:16:42.399 --> 00:16:45.680 remember provide written information 00:16:45.680 --> 00:16:49.240 using jarg andfree language to help us 00:16:49.240 --> 00:16:50.600 to 00:16:50.600 --> 00:16:54.079 understand help us to keep notes so that 00:16:54.079 --> 00:16:57.560 we can keep track of what is happening 00:16:57.560 --> 00:17:00.680 for example when I attend Ed a hospital 00:17:00.680 --> 00:17:03.679 I needed to meet an individual staff 00:17:03.679 --> 00:17:08.880 member who was fairly aware of dementia 00:17:08.880 --> 00:17:10.400 and helped me 00:17:10.400 --> 00:17:14.359 support on a regular basis throughout my 00:17:14.359 --> 00:17:16.839 stay especially with regards to 00:17:16.839 --> 00:17:19.880 explaining and noting the key aspects of 00:17:19.880 --> 00:17:23.760 my appointment and how to cope well in 00:17:23.760 --> 00:17:27.240 the ward itself 00:17:29.000 --> 00:17:33.160 so if you have someone 00:17:33.160 --> 00:17:36.559 who has 00:17:38.559 --> 00:17:42.360 dementia ensure 00:17:42.360 --> 00:17:48.600 that you are making clear to the 00:17:48.600 --> 00:17:53.440 individual what is being 00:17:53.440 --> 00:17:56.520 discussed what is 00:17:56.520 --> 00:18:00.520 being agreed 00:18:00.520 --> 00:18:04.919 and that there is someone with 00:18:04.919 --> 00:18:08.080 them that 00:18:08.080 --> 00:18:09.760 can 00:18:09.760 --> 00:18:13.960 either take notes for 00:18:13.960 --> 00:18:19.600 them if they do not have the 00:18:20.720 --> 00:18:24.559 ability to make 00:18:27.520 --> 00:18:33.120 clear and any decisions that are 00:18:33.919 --> 00:18:38.919 taken to make clear 00:18:38.919 --> 00:18:42.559 anything that has 00:18:44.919 --> 00:18:48.799 been that has been 00:18:49.320 --> 00:18:53.600 discussed environment may affect us more 00:18:53.600 --> 00:18:54.880 than 00:18:54.880 --> 00:18:59.280 you the environment we are in 00:18:59.280 --> 00:19:03.159 affects us more than you provide a 00:19:03.159 --> 00:19:06.960 calming environment and opportunities to 00:19:06.960 --> 00:19:10.120 engage in activities that mean something 00:19:10.120 --> 00:19:11.960 to 00:19:11.960 --> 00:19:16.679 us use person centered tools like this 00:19:16.679 --> 00:19:20.880 is me to find out more about me to 00:19:20.880 --> 00:19:25.520 tailor activities to meet my needs 00:19:25.520 --> 00:19:28.440 specifically designed quiet places and 00:19:28.440 --> 00:19:30.720 mus girls can 00:19:30.720 --> 00:19:33.360 help there are also important issues 00:19:33.360 --> 00:19:36.760 regarding how the building itself looks 00:19:36.760 --> 00:19:41.159 unfamiliar surroundings noises and busy 00:19:41.159 --> 00:19:44.320 unclear spaces can be challenging and 00:19:44.320 --> 00:19:46.600 lead the agitation and 00:19:46.600 --> 00:19:49.280 confusion it's important for a dimension 00:19:49.280 --> 00:19:52.039 person to have an individual space away 00:19:52.039 --> 00:19:55.760 from others I think navigation and we 00:19:55.760 --> 00:19:58.880 finding is also important and it is help 00:19:58.880 --> 00:20:02.520 to have appropriate signs ideally they 00:20:02.520 --> 00:20:05.720 should be slightly large with clear 00:20:05.720 --> 00:20:09.799 words placed at face level and not too 00:20:09.799 --> 00:20:13.440 high merals and painting can also be 00:20:13.440 --> 00:20:16.720 helpful ideally colors that aren't too 00:20:16.720 --> 00:20:20.320 dark such as red and green I recently 00:20:20.320 --> 00:20:25.440 found it difficult to find uh tight uh 00:20:25.440 --> 00:20:28.799 toilet near my bed until the Staff 00:20:28.799 --> 00:20:31.840 member helped me find it as it didn't 00:20:31.840 --> 00:20:34.960 have a sign but the biggest thing would 00:20:34.960 --> 00:20:37.000 be 00:20:37.000 --> 00:20:40.320 disorientation and confusion uh you know 00:20:40.320 --> 00:20:41.960 of coming out of a room and knowing 00:20:41.960 --> 00:20:44.360 which way to turn and what way to go and 00:20:44.360 --> 00:20:46.799 that's why for me sign AG is vital you 00:20:46.799 --> 00:20:48.919 know in all situations and if there's 00:20:48.919 --> 00:20:51.400 good sign AG I'm much more confident and 00:20:51.400 --> 00:20:53.320 and can live much more 00:20:53.320 --> 00:20:55.440 independently I would describe my head 00:20:55.440 --> 00:20:57.280 as like a washing machine you know of so 00:20:57.280 --> 00:20:59.320 much G through and try 00:20:59.320 --> 00:21:03.400 to process things you know that would be 00:21:03.400 --> 00:21:04.760 the biggest 00:21:04.760 --> 00:21:07.600 challenge it's it's even more confusing 00:21:07.600 --> 00:21:09.280 cuz you're already not well you know 00:21:09.280 --> 00:21:10.880 you're already worried about what's 00:21:10.880 --> 00:21:13.679 going on why you're there uh and the 00:21:13.679 --> 00:21:16.679 noise and you know yourself anybody is 00:21:16.679 --> 00:21:18.640 sort of in an particularly in an NA 00:21:18.640 --> 00:21:20.360 Department there's so much banging and 00:21:20.360 --> 00:21:23.200 cluttering and there's noise going on 00:21:23.200 --> 00:21:24.799 either side of you in front of you 00:21:24.799 --> 00:21:26.600 behind you you know there's so many 00:21:26.600 --> 00:21:29.840 conversations going on uh you know quite 00:21:29.840 --> 00:21:32.000 often you're planted quite close to the 00:21:32.000 --> 00:21:34.080 nursery station because there's no 00:21:34.080 --> 00:21:36.600 cubicles um you know and there's all the 00:21:36.600 --> 00:21:38.320 noise and all the movements sort going 00:21:38.320 --> 00:21:41.240 on that and it it can become very very 00:21:41.240 --> 00:21:44.880 confusing and uh you know it's a hard 00:21:44.880 --> 00:21:46.919 thing to process any information and 00:21:46.919 --> 00:21:49.840 then when they come to speak to you you 00:21:49.840 --> 00:21:51.559 know there's so much noise going on 00:21:51.559 --> 00:21:54.159 there's so much backgr noise 00:21:54.159 --> 00:21:56.760 and conversations going on around you 00:21:56.760 --> 00:21:59.000 that is hard to process what actually 00:21:59.000 --> 00:22:01.840 been said to you whereas again a very 00:22:01.840 --> 00:22:04.000 simple thing would be to have somewhere 00:22:04.000 --> 00:22:07.080 that once they know you have a dementia 00:22:07.080 --> 00:22:09.679 diagnosis and to ask the person you know 00:22:09.679 --> 00:22:12.360 what can we do to help and I think most 00:22:12.360 --> 00:22:14.120 people would say if I could have a quiet 00:22:14.120 --> 00:22:16.200 room to have whenever the doctor's 00:22:16.200 --> 00:22:20.559 talking to me I think that would make a 00:22:20.559 --> 00:22:22.240 big difference you know you would sort 00:22:22.240 --> 00:22:24.480 of know that during that important time 00:22:24.480 --> 00:22:25.960 when you're meant to be able to take 00:22:25.960 --> 00:22:29.080 information in you know that they would 00:22:29.080 --> 00:22:31.120 take you somewhere that that could 00:22:31.120 --> 00:22:35.520 happen easier than it does in the busy 00:22:35.520 --> 00:22:36.720 any 00:22:36.720 --> 00:22:39.520 Department it was again with I mention 00:22:39.520 --> 00:22:42.400 in hospitals it was a new hospital 00:22:42.400 --> 00:22:43.960 absolutely 00:22:43.960 --> 00:22:46.440 beautiful like an into a very Swanky 00:22:46.440 --> 00:22:48.400 hotel but you go in there you're not 00:22:48.400 --> 00:22:51.320 coming back out there is no signage 00:22:51.320 --> 00:22:54.960 anywhere and the every Corridor looks 00:22:54.960 --> 00:22:57.760 exactly the same and you sort of have to 00:22:57.760 --> 00:22:59.960 go up in the left and go long a bit then 00:22:59.960 --> 00:23:01.880 go down and a left and go long a bit and 00:23:01.880 --> 00:23:05.320 then come back up again you know um 00:23:05.320 --> 00:23:08.360 because of the waya they intertwined and 00:23:08.360 --> 00:23:09.960 as I say you can out have a lift but 00:23:09.960 --> 00:23:11.840 there's no signage to tell you to turn 00:23:11.840 --> 00:23:14.760 left turn right or what way to go you 00:23:14.760 --> 00:23:18.600 know and that was a horrible 00:23:18.600 --> 00:23:21.279 experience well I have had the 00:23:21.279 --> 00:23:26.320 experience of um going into Hospital 00:23:26.320 --> 00:23:28.840 under an am with an ambulance J in the 00:23:28.840 --> 00:23:30.080 times of 00:23:30.080 --> 00:23:32.520 covid 00:23:32.520 --> 00:23:36.200 and the ambulance team were fantastic 00:23:36.200 --> 00:23:39.039 cuz they were aware of my challenges 00:23:39.039 --> 00:23:43.600 they thought I had a triple A um but it 00:23:43.600 --> 00:23:46.240 actually turned out to be kidney stones 00:23:46.240 --> 00:23:49.120 but when they took me into the hospital 00:23:49.120 --> 00:23:51.480 rather than just sitting 00:23:51.480 --> 00:23:55.120 there in the general area they 00:23:55.120 --> 00:23:58.000 accelerated my Passage through to being 00:23:58.000 --> 00:24:01.159 on a a bed in one of the cubicles 00:24:01.159 --> 00:24:02.880 because they knew that with my 00:24:02.880 --> 00:24:07.039 behavioral variant of of of of of the 00:24:07.039 --> 00:24:09.880 dementia of the the FTD the frontal 00:24:09.880 --> 00:24:13.520 temporal dementia that my filters had 00:24:13.520 --> 00:24:16.919 disappeared I would say things as I felt 00:24:16.919 --> 00:24:20.840 about them I would swear which I 00:24:20.840 --> 00:24:23.559 wouldn't have done in the past but 00:24:23.559 --> 00:24:26.320 frustration the feeling of not being 00:24:26.320 --> 00:24:29.480 able to express yourself as as I once 00:24:29.480 --> 00:24:33.080 did these things lead to just filterless 00:24:33.080 --> 00:24:35.799 behaviors and it's not that you're being 00:24:35.799 --> 00:24:39.080 unkind or nasty to the staff it's just 00:24:39.080 --> 00:24:41.880 how things come across so it's important 00:24:41.880 --> 00:24:44.480 that the staff in that environment build 00:24:44.480 --> 00:24:48.240 a rapport with the patient build the 00:24:48.240 --> 00:24:51.360 trust and the confidence where they can 00:24:51.360 --> 00:24:53.600 exchange freely and 00:24:53.600 --> 00:24:57.320 happily and the second time I um 00:24:57.320 --> 00:25:00.360 developed culat my eye and I went to the 00:25:00.360 --> 00:25:01.960 ation first of all it was late on in the 00:25:01.960 --> 00:25:05.120 evening and uh he he rang the casualty 00:25:05.120 --> 00:25:07.919 to say expect me so they were expecting 00:25:07.919 --> 00:25:09.279 it and again they knew at that time I 00:25:09.279 --> 00:25:11.919 was living with the Mana so the uh 00:25:11.919 --> 00:25:14.360 consultant actually saw me and the the 00:25:14.360 --> 00:25:16.360 emergency department was very busy so 00:25:16.360 --> 00:25:18.000 she actually took me to a very quiet 00:25:18.000 --> 00:25:20.440 place away from the the emergency 00:25:20.440 --> 00:25:23.399 department and they did all all the had 00:25:23.399 --> 00:25:25.000 to do at that time 00:25:25.000 --> 00:25:27.559 and her care and even the nursing care 00:25:27.559 --> 00:25:30.720 was was was was first class at that time 00:25:30.720 --> 00:25:33.440 with really noise and and a lot of 00:25:33.440 --> 00:25:36.000 people yeah I find people's faces just 00:25:36.000 --> 00:25:39.120 blur and the noise just it really 00:25:39.120 --> 00:25:41.320 scrambles my brain I can't think or 00:25:41.320 --> 00:25:43.520 focus on anything with with noise a 00:25:43.520 --> 00:25:46.240 quiet place would be ideal yeah 00:25:46.240 --> 00:25:50.919 yeah assume we have capacity don't make 00:25:50.919 --> 00:25:54.240 assumptions about our level of capacity 00:25:54.240 --> 00:25:57.799 or ability to engage in our care 00:25:57.799 --> 00:26:00.159 planning and decision 00:26:00.159 --> 00:26:03.559 making I may not have capacity to make 00:26:03.559 --> 00:26:06.640 every decision but there will be some 00:26:06.640 --> 00:26:11.960 decisions I can still make and want to 00:26:11.960 --> 00:26:16.399 make don't speak to our family members 00:26:16.399 --> 00:26:21.200 and ignore us speak directly to us first 00:26:21.200 --> 00:26:24.399 and allow us to defer to our support 00:26:24.399 --> 00:26:28.760 person if we need to 00:26:28.760 --> 00:26:31.880 ask me what you 00:26:31.880 --> 00:26:36.640 need what sorry I would want them to ask 00:26:36.640 --> 00:26:38.520 me what I needed or wanted not to 00:26:38.520 --> 00:26:40.440 presume they know because they might 00:26:40.440 --> 00:26:43.480 have had somebody in earlier that day or 00:26:43.480 --> 00:26:45.399 the day before or the week before with 00:26:45.399 --> 00:26:47.080 the dementia diagnosis he needs 00:26:47.080 --> 00:26:49.679 something different to what I would need 00:26:49.679 --> 00:26:52.000 you know so I would always say you 00:26:52.000 --> 00:26:55.360 know treat that person as an individual 00:26:55.360 --> 00:26:57.840 and find out what you can do that will 00:26:57.840 --> 00:27:01.279 make them them more comfortable feel 00:27:01.279 --> 00:27:05.200 safer and and in the turn that will ease 00:27:05.200 --> 00:27:07.640 your workload because if the person with 00:27:07.640 --> 00:27:10.120 the dementia diagnosis feels relaxed and 00:27:10.120 --> 00:27:14.640 feels at ease they're less likely to be 00:27:14.640 --> 00:27:18.520 given hustle or be kicking off about 00:27:18.520 --> 00:27:21.320 something I'm a sitting in the outside 00:27:21.320 --> 00:27:24.200 wetting room when she asked me could it 00:27:24.200 --> 00:27:26.080 come into the room and I SP to you if 00:27:26.080 --> 00:27:28.000 you want your son to come in you can 00:27:28.000 --> 00:27:29.559 come and I says no I'll just going 00:27:29.559 --> 00:27:32.120 myself and when I went into the room she 00:27:32.120 --> 00:27:34.320 was going shook my hand and says to me 00:27:34.320 --> 00:27:36.760 Martin I'm sorry to tell you I'm not 00:27:36.760 --> 00:27:38.760 sure the exact words but you have 00:27:38.760 --> 00:27:40.039 Alzheimer's 00:27:40.039 --> 00:27:42.720 dementia well you're you're taken back 00:27:42.720 --> 00:27:45.480 you're just shock she says you want me 00:27:45.480 --> 00:27:49.120 to get your son bring him in and I I 00:27:49.120 --> 00:27:52.000 says no not definitely not to my son I 00:27:52.000 --> 00:27:53.840 get my sons together when to go home and 00:27:53.840 --> 00:27:55.559 I'll tell them when to go home I got 00:27:55.559 --> 00:27:57.679 them settled down and things I says look 00:27:57.679 --> 00:28:00.240 I feel gr I still feel the same thing 00:28:00.240 --> 00:28:01.960 I'm still your daddy I'm still the thing 00:28:01.960 --> 00:28:04.720 and I'm still get carrying on and two of 00:28:04.720 --> 00:28:06.360 my sons are two 00:28:06.360 --> 00:28:10.080 M Twins and there there we go oh God not 00:28:10.080 --> 00:28:11.799 be able to tell him anything now not 00:28:11.799 --> 00:28:14.279 keep a secret he can't keep anything but 00:28:14.279 --> 00:28:16.919 it was it was good the experience was 00:28:16.919 --> 00:28:21.000 good be aware of our details don't make 00:28:21.000 --> 00:28:25.159 us repeat our story multiple times it 00:28:25.159 --> 00:28:29.080 makes us feel like we are being tested 00:28:29.080 --> 00:28:32.640 Ed read your colleagues assessments 00:28:32.640 --> 00:28:36.000 repeating information is 00:28:36.000 --> 00:28:40.080 exhausting for us yeah again I think 00:28:40.080 --> 00:28:41.640 that's it you know the nurse comes in 00:28:41.640 --> 00:28:43.360 you see the nurse and Tre eyes you tell 00:28:43.360 --> 00:28:46.120 them the story you then see whoever you 00:28:46.120 --> 00:28:48.600 move to into the cubicles or into the 00:28:48.600 --> 00:28:51.080 back bit of the any you tell them your 00:28:51.080 --> 00:28:53.679 story the doctor then comes in or a 00:28:53.679 --> 00:28:56.480 doctor comes in and you tell them it but 00:28:56.480 --> 00:28:58.519 there may be not the particular doctor 00:28:58.519 --> 00:29:00.039 you need to see if it's something 00:29:00.039 --> 00:29:01.840 specific you're there for you know if it 00:29:01.840 --> 00:29:04.600 was for example something to do with 00:29:04.600 --> 00:29:06.600 your heart you know you would get a 00:29:06.600 --> 00:29:08.399 general doctor come in talk oh you need 00:29:08.399 --> 00:29:10.000 to you know we need to get something 00:29:10.000 --> 00:29:12.159 done from Cardiology or whatever they 00:29:12.159 --> 00:29:13.919 can die and you have to repeat the whole 00:29:13.919 --> 00:29:17.200 thing again uh and that can become quite 00:29:17.200 --> 00:29:18.880 frustrating and you sort of think you 00:29:18.880 --> 00:29:21.279 know can you not read you know can you 00:29:21.279 --> 00:29:23.000 not actually look at the notes that have 00:29:23.000 --> 00:29:26.559 been taken um 10 times beforehand uh and 00:29:26.559 --> 00:29:28.120 you s of are they're trying to trick you 00:29:28.120 --> 00:29:29.880 right here you know trying to get you to 00:29:29.880 --> 00:29:32.120 say something different to what you had 00:29:32.120 --> 00:29:35.320 said before I think it is I think it's a 00:29:35.320 --> 00:29:38.960 challenge you know because as I say by 00:29:38.960 --> 00:29:40.440 you're that stage you're already in a 00:29:40.440 --> 00:29:43.600 real state of confusion and panic 00:29:43.600 --> 00:29:47.880 and um a bit more unsettled you know so 00:29:47.880 --> 00:29:50.559 to be asked the same story over again 00:29:50.559 --> 00:29:52.399 can become very frustrating and I think 00:29:52.399 --> 00:29:54.480 at times in I think you can become a bit 00:29:54.480 --> 00:29:56.320 sharper than maybe that what you would 00:29:56.320 --> 00:29:59.600 normally be but it's because you sort of 00:29:59.600 --> 00:30:01.120 you're fed up with the length of time 00:30:01.120 --> 00:30:02.720 you sort of have sitting there probably 00:30:02.720 --> 00:30:04.080 waiting anyway and you haven't seen 00:30:04.080 --> 00:30:05.640 anybody and then the next person come 00:30:05.640 --> 00:30:07.240 say ask the exactly the same question 00:30:07.240 --> 00:30:10.200 again you s think like this has moved on 00:30:10.200 --> 00:30:12.399 nowhere you know you 00:30:12.399 --> 00:30:14.440 haven't you know you're asking me what 00:30:14.440 --> 00:30:16.880 the person asked me two hours ago but 00:30:16.880 --> 00:30:19.159 you're doing nothing different but yes I 00:30:19.159 --> 00:30:21.360 think it is a challenge you know with I 00:30:21.360 --> 00:30:23.440 think it's a challenge for anybody but I 00:30:23.440 --> 00:30:24.760 think for somebody with a dementia 00:30:24.760 --> 00:30:26.720 diagnosis yesterday is more of a 00:30:26.720 --> 00:30:29.519 challenge you use Clear 00:30:29.519 --> 00:30:33.799 language if you are going to perform an 00:30:33.799 --> 00:30:36.399 intervention talk to us 00:30:36.399 --> 00:30:40.440 beforehand and explain each step in 00:30:40.440 --> 00:30:44.559 clear words or with gestures if our 00:30:44.559 --> 00:30:46.720 understanding is very 00:30:46.720 --> 00:30:48.880 limited give us 00:30:48.880 --> 00:30:52.799 time explaining the procedure will help 00:30:52.799 --> 00:30:54.960 us to 00:30:54.960 --> 00:30:58.320 participate if I need reassurance 00:30:58.320 --> 00:31:01.600 reassure me I'm not saying you have to 00:31:01.600 --> 00:31:04.600 have dementia to understand it what I'm 00:31:04.600 --> 00:31:08.679 saying is what I said to students is 00:31:08.679 --> 00:31:12.320 take it easy at the beginning don't 00:31:12.320 --> 00:31:16.200 bombard them with a rapid release of 00:31:16.200 --> 00:31:20.480 questions and don't L link questions 00:31:20.480 --> 00:31:23.480 together make the subject if it is 00:31:23.480 --> 00:31:25.760 driving something like 00:31:25.760 --> 00:31:29.120 that say are you driving your 00:31:29.120 --> 00:31:32.639 car wait for the answer and then if they 00:31:32.639 --> 00:31:36.200 say no I'm not then you can discuss it 00:31:36.200 --> 00:31:39.440 with them but I think if you go into 00:31:39.440 --> 00:31:43.639 something you know it only makes them I 00:31:43.639 --> 00:31:46.840 can't interrupt this but I don't agree 00:31:46.840 --> 00:31:50.360 with her so very gently say l thank you 00:31:50.360 --> 00:31:54.720 very much for coming to talk to me and I 00:31:54.720 --> 00:31:58.559 know very little uh about how you're 00:31:58.559 --> 00:32:02.320 feeling at the moment so can you tell me 00:32:02.320 --> 00:32:06.080 how you felt when you got your diagnosis 00:32:06.080 --> 00:32:09.760 what went before did you think you had 00:32:09.760 --> 00:32:12.639 dementia and how you felt when you 00:32:12.639 --> 00:32:17.320 actually were told you have 00:32:17.320 --> 00:32:20.440 dementia makes a 00:32:20.440 --> 00:32:25.000 difference Health and Social Care 00:32:25.000 --> 00:32:30.320 staff working with any form of 00:32:30.519 --> 00:32:33.519 dementia 00:32:33.960 --> 00:32:36.720 need to 00:32:36.720 --> 00:32:39.399 communicate 00:32:39.399 --> 00:32:42.760 clearly with any 00:32:42.760 --> 00:32:47.159 individual with any form of 00:32:47.159 --> 00:32:49.639 dementia they 00:32:49.639 --> 00:32:55.080 need to give clear 00:32:56.000 --> 00:32:58.919 instructions their need 00:32:58.919 --> 00:33:00.159 to 00:33:00.159 --> 00:33:02.080 ensure that 00:33:02.080 --> 00:33:05.760 people with whom they are 00:33:05.760 --> 00:33:07.960 working 00:33:07.960 --> 00:33:12.360 have a clear 00:33:12.360 --> 00:33:14.639 understanding of 00:33:14.639 --> 00:33:18.360 what is being 00:33:19.600 --> 00:33:25.039 discussed and that they 00:33:25.039 --> 00:33:29.159 have made clear 00:33:29.159 --> 00:33:31.279 here 00:33:31.279 --> 00:33:36.519 exactly what is being 00:33:36.799 --> 00:33:41.240 shared what is being 00:33:41.960 --> 00:33:46.519 said maintain our confidentiality and 00:33:46.519 --> 00:33:51.120 dignity share information with us 00:33:51.120 --> 00:33:53.919 sensitively and take into 00:33:53.919 --> 00:33:58.639 consideration our confidentiality 00:33:58.720 --> 00:34:02.080 privacy and dignity are 00:34:02.080 --> 00:34:05.559 important we may not want other patients 00:34:05.559 --> 00:34:08.918 visitors to know we have 00:34:08.918 --> 00:34:13.838 dementia yeah within the hold of 00:34:13.960 --> 00:34:17.639 dementia I find myself falling apart I 00:34:17.639 --> 00:34:19.879 find 00:34:19.879 --> 00:34:22.879 myself 00:34:23.960 --> 00:34:29.560 unable to be the person I was 00:34:29.560 --> 00:34:31.919 to 00:34:33.079 --> 00:34:36.000 communicate the 00:34:36.000 --> 00:34:40.399 way I should be able to 00:34:43.239 --> 00:34:45.918 communicate I 00:34:45.918 --> 00:34:49.158 lost my 00:34:49.639 --> 00:34:52.719 skills I lost a lot 00:34:52.719 --> 00:34:56.999 of what was 00:34:59.960 --> 00:35:02.880 what being 00:35:03.119 --> 00:35:05.280 me as a 00:35:05.280 --> 00:35:08.280 person 00:35:14.200 --> 00:35:17.320 was I 00:35:17.320 --> 00:35:20.720 was I was 00:35:22.760 --> 00:35:27.160 lost well for for myself or anybody of 00:35:27.160 --> 00:35:30.119 the just P his like hard if I come in as 00:35:30.119 --> 00:35:30.920 a 00:35:30.920 --> 00:35:32.960 patient they don't know why I've got the 00:35:32.960 --> 00:35:36.680 Mana unless I tell them I've got the 00:35:36.960 --> 00:35:40.480 Mana don't don't have me 00:35:40.480 --> 00:35:43.000 to have to say that I've got the Manion 00:35:43.000 --> 00:35:46.200 just treat me where courtesy of of think 00:35:46.200 --> 00:35:49.319 most most sitting rooms in the hospital 00:35:49.319 --> 00:35:51.920 you know are like they're Havoc if it 00:35:51.920 --> 00:35:54.800 comes to a thing many of places been in 00:35:54.800 --> 00:35:56.640 I've turned around and says look I'm in 00:35:56.640 --> 00:35:58.680 the early stages of the Mana could you 00:35:58.680 --> 00:36:00.480 give me a we bit of time 00:36:00.480 --> 00:36:04.680 here and just things get mixed up for I 00:36:04.680 --> 00:36:07.079 think could just if my name would come 00:36:07.079 --> 00:36:08.720 up in that 00:36:08.720 --> 00:36:12.599 computer without me having to say and 00:36:12.599 --> 00:36:14.480 200 people or 100 people behind me 00:36:14.480 --> 00:36:19.720 listening he's got the Mana list he's 00:36:19.720 --> 00:36:22.240 different it's different just just come 00:36:22.240 --> 00:36:24.240 up on the computer they made away they 00:36:24.240 --> 00:36:25.839 know they I've got the Mana where we're 00:36:25.839 --> 00:36:27.240 just talking about a blue heart or 00:36:27.240 --> 00:36:30.560 purple or something like that and see 00:36:30.560 --> 00:36:32.000 what were the attitude changes that 00:36:32.000 --> 00:36:35.720 those change have used are have used our 00:36:35.720 --> 00:36:38.319 we th card or we IDE I've used to be 00:36:38.319 --> 00:36:42.520 smart card not the smart card uh JN card 00:36:42.520 --> 00:36:45.319 I've used the JN card the difference 00:36:45.319 --> 00:36:47.760 those things make and change people's 00:36:47.760 --> 00:36:50.920 attitude it's wonderful wonderful 00:36:50.920 --> 00:36:53.319 provide a support 00:36:53.319 --> 00:36:56.640 person having a designated support 00:36:56.640 --> 00:37:01.160 person can help to keep us calm and 00:37:01.160 --> 00:37:04.960 reassured one key person who supports us 00:37:04.960 --> 00:37:09.079 through our stay makes a huge difference 00:37:09.079 --> 00:37:12.359 to our Hospital experience I had to go 00:37:12.359 --> 00:37:14.880 and get an operation to take out a tumor 00:37:14.880 --> 00:37:16.920 on my 00:37:16.920 --> 00:37:19.680 leg and uh it was quite difficult 00:37:19.680 --> 00:37:21.599 because the specialist even though she 00:37:21.599 --> 00:37:26.160 was uh taking the the tumor out she was 00:37:26.160 --> 00:37:29.000 quite um a lot of words that she was 00:37:29.000 --> 00:37:31.079 using was very difficult for me to 00:37:31.079 --> 00:37:33.000 understand because they were quite 00:37:33.000 --> 00:37:36.920 Technical and she then got a a a young 00:37:36.920 --> 00:37:40.920 nurse to come in and help me because she 00:37:40.920 --> 00:37:44.079 also knocked me out for six hours she 00:37:44.079 --> 00:37:47.040 put me asleep for 6 hours where she was 00:37:47.040 --> 00:37:49.640 on a lot of things she was help the the 00:37:49.640 --> 00:37:52.680 the other lady was helping me she met me 00:37:52.680 --> 00:37:56.560 I was there for about um a full full day 00:37:56.560 --> 00:37:57.960 overnight 00:37:57.960 --> 00:38:01.079 and that young lady was a major help to 00:38:01.079 --> 00:38:03.560 me in the hospital because she helped me 00:38:03.560 --> 00:38:07.319 even write down my words she helped me 00:38:07.319 --> 00:38:11.599 even find places and she also said uh 00:38:11.599 --> 00:38:14.359 even tomorrow when you go home now that 00:38:14.359 --> 00:38:17.119 you've been operated this is what you do 00:38:17.119 --> 00:38:20.440 so even though the specialist operated 00:38:20.440 --> 00:38:24.040 me well that lady was a massive helper 00:38:24.040 --> 00:38:27.160 she made the difference and I I because 00:38:27.160 --> 00:38:29.480 I spoke to the specialist and you even 00:38:29.480 --> 00:38:32.319 use my card and said I know you're going 00:38:32.319 --> 00:38:35.800 to help me but I've got Alzheimer's and 00:38:35.800 --> 00:38:38.480 I need someone to talk to me that give 00:38:38.480 --> 00:38:41.319 me advice and um because some of the 00:38:41.319 --> 00:38:43.280 things you've said you're going to do I 00:38:43.280 --> 00:38:46.599 haven't really understood fully what's 00:38:46.599 --> 00:38:48.319 going to happen or even how I help 00:38:48.319 --> 00:38:51.240 myself so and when that other lady came 00:38:51.240 --> 00:38:53.680 in she was massively helpful to me 00:38:53.680 --> 00:38:55.280 possibly like other people with Dem 00:38:55.280 --> 00:38:57.640 Mantia I find that sometimes the 00:38:57.640 --> 00:38:59.760 difficult to understand if I haven't 00:38:59.760 --> 00:39:03.760 heard about things for a while so that 00:39:03.760 --> 00:39:07.440 other lady was a bit more explaining and 00:39:07.440 --> 00:39:11.240 also helped me make notes to write down 00:39:11.240 --> 00:39:13.280 a great understanding of what was going 00:39:13.280 --> 00:39:15.119 to happen to me and particularly how I 00:39:15.119 --> 00:39:17.200 dealt with myself the next few days when 00:39:17.200 --> 00:39:19.839 I got home having that interface between 00:39:19.839 --> 00:39:20.680 the 00:39:20.680 --> 00:39:24.880 consultant and also uh uh uh uh the 00:39:24.880 --> 00:39:29.640 patient with that specialist nurse was 00:39:29.640 --> 00:39:33.400 invaluable and that I think is something 00:39:33.400 --> 00:39:36.680 which can be really helpful to other 00:39:36.680 --> 00:39:39.840 people one thing that I would insist 00:39:39.840 --> 00:39:41.319 [Music] 00:39:41.319 --> 00:39:44.880 on would be 00:39:44.880 --> 00:39:48.720 that I 00:39:49.040 --> 00:39:52.240 had someone with 00:39:52.240 --> 00:39:56.680 me that I trust 00:39:58.480 --> 00:40:01.920 someone with me 00:40:03.359 --> 00:40:06.359 that 00:40:06.560 --> 00:40:09.200 could be 00:40:09.200 --> 00:40:12.200 there 00:40:13.800 --> 00:40:17.160 to like say I would either be taking my 00:40:17.160 --> 00:40:19.319 own 00:40:19.319 --> 00:40:23.839 notes that's another thing I'd lost my 00:40:23.839 --> 00:40:28.400 writing skills i' had lost I mean 00:40:28.400 --> 00:40:32.680 as well as losing my 00:40:32.680 --> 00:40:35.960 verbosity I had 00:40:35.960 --> 00:40:40.000 lost my ability to 00:40:40.040 --> 00:40:44.640 write and I have been practicing 00:40:45.400 --> 00:40:49.560 writing just to get myself back off to 00:40:49.560 --> 00:40:53.040 speed to be able 00:40:53.040 --> 00:40:58.160 to communicate effectively 00:40:59.480 --> 00:41:01.000 I've also been 00:41:01.000 --> 00:41:04.200 reading a 00:41:05.960 --> 00:41:10.079 lot to try 00:41:10.160 --> 00:41:15.880 and ensure that my communication 00:41:15.960 --> 00:41:19.319 is as it should 00:41:19.319 --> 00:41:24.920 be as I consider it should 00:41:25.839 --> 00:41:30.079 be cuz I'm a hard 00:41:32.359 --> 00:41:35.680 Taskmaster the following scene is based 00:41:35.680 --> 00:41:37.839 on our real life 00:41:37.839 --> 00:41:41.599 experiences of poor health care 00:41:41.599 --> 00:41:42.830 interactions 00:41:42.830 --> 00:42:01.659 [Music] 00:42:02.760 --> 00:42:04.800 without a clear 00:42:04.800 --> 00:42:08.119 introduction we may feel rushed or 00:42:08.119 --> 00:42:11.040 panicked unsure of what is 00:42:11.040 --> 00:42:13.800 happening which may unnecessarily 00:42:13.800 --> 00:42:15.640 increase our 00:42:15.640 --> 00:42:19.650 anxiety and generate unexpected 00:42:19.650 --> 00:42:20.839 [Music] 00:42:20.839 --> 00:42:24.559 reactions insufficient support with wayf 00:42:24.559 --> 00:42:27.760 finding could leave us disoriented ated 00:42:27.760 --> 00:42:28.920 and 00:42:28.920 --> 00:42:32.359 Confused ultimately reducing our powers 00:42:32.359 --> 00:42:33.440 of 00:42:33.440 --> 00:42:35.830 concentration for the following 00:42:35.830 --> 00:42:37.160 [Music] 00:42:37.160 --> 00:42:40.599 appointment disorganized and chaotic 00:42:40.599 --> 00:42:44.760 clinical space may be distracting or 00:42:44.760 --> 00:42:48.800 overwhelming for us reducing ability to 00:42:48.800 --> 00:42:51.839 focus and 00:42:51.839 --> 00:42:55.480 communicate not explaining procedures or 00:42:55.480 --> 00:42:58.359 interventions clearly in advance can 00:42:58.359 --> 00:43:00.920 cause us upset or 00:43:00.920 --> 00:43:05.880 distress especially as our dementia 00:43:05.960 --> 00:43:09.640 advances not explaining next steps in 00:43:09.640 --> 00:43:12.400 advance increases our 00:43:12.400 --> 00:43:15.880 anxiety and 00:43:17.200 --> 00:43:20.300 [Music] 00:43:20.760 --> 00:43:23.440 confusion uh Hazel and baby is that 00:43:23.440 --> 00:43:25.240 right yeah I'm 00:43:25.240 --> 00:43:27.960 Dr tonight 00:43:27.960 --> 00:43:30.720 without a clear and full 00:43:30.720 --> 00:43:33.760 introduction we may not realize the 00:43:33.760 --> 00:43:35.480 purpose of the 00:43:35.480 --> 00:43:38.440 appointment 00:43:38.440 --> 00:43:41.240 um no I'm not I'm not really seeing 00:43:41.240 --> 00:43:43.640 anything there there's no results back 00:43:43.640 --> 00:43:47.839 just yet poor positioning can hinder 00:43:47.839 --> 00:43:51.520 effective communication with 00:43:51.520 --> 00:43:54.520 us not to 00:43:54.520 --> 00:43:59.319 good we'll maybe asking as repetitive 00:43:59.319 --> 00:44:01.640 questions without 00:44:01.640 --> 00:44:05.559 context can make us feel like we are 00:44:05.559 --> 00:44:08.040 being 00:44:08.319 --> 00:44:12.240 tested speaking to a carer instead of 00:44:12.240 --> 00:44:16.720 directly to us shows a presumption about 00:44:16.720 --> 00:44:18.079 our 00:44:18.079 --> 00:44:21.640 capacity the following scene is based on 00:44:21.640 --> 00:44:25.599 our real life experiences of positive 00:44:25.599 --> 00:44:29.040 healthc care interaction 00:44:30.370 --> 00:44:33.240 [Music] 00:44:33.240 --> 00:44:36.480 thank you 00:44:39.900 --> 00:45:03.800 [Music] 00:45:03.800 --> 00:45:05.440 the consultant comes okay and I'll F 00:45:05.440 --> 00:45:09.680 this across the H yeah all 00:45:12.040 --> 00:45:15.359 right there we go like the wait the 00:45:15.359 --> 00:45:16.960 consultant will be right in through the 00:45:16.960 --> 00:45:21.079 door thank you 00:45:28.040 --> 00:45:30.400 how are you I'm Dr sville I'm one of the 00:45:30.400 --> 00:45:33.119 Consultants it's nice to meet you it's 00:45:33.119 --> 00:45:35.240 Davey is that right Dave yeah Davey I I 00:45:35.240 --> 00:45:37.440 haven't met you before um I understand 00:45:37.440 --> 00:45:39.040 that you're you're here to talk about 00:45:39.040 --> 00:45:40.640 some results that's right is that 00:45:40.640 --> 00:45:43.599 correct be okay yeah sure I I haven't 00:45:43.599 --> 00:45:46.160 been to doing too bad been keeping busy 00:45:46.160 --> 00:45:47.559 and very 00:45:47.559 --> 00:45:52.079 active so I do and uh yeah just keep 00:45:52.079 --> 00:45:54.359 keep busy okay okay how have you been 00:45:54.359 --> 00:45:57.119 sleeping recently sleep's been a bit on 00:45:57.119 --> 00:46:01.200 off um but uh I always get caught up 00:46:01.200 --> 00:46:03.160 sometimes away quite early right but uh 00:46:03.160 --> 00:46:05.760 I can get caught up the next night okay 00:46:05.760 --> 00:46:07.800 and what time would you go to bed at 00:46:07.800 --> 00:46:11.440 roughly normally try half time 11:00 um 00:46:11.440 --> 00:46:13.839 probably a bit overeen of anything right 00:46:13.839 --> 00:46:16.240 I started sweet stuff I Can't Get Enough 00:46:16.240 --> 00:46:19.200 at the whatever's uh going on you know 00:46:19.200 --> 00:46:21.960 right okay and then just about some of 00:46:21.960 --> 00:46:24.760 your medications um has anything changed 00:46:24.760 --> 00:46:27.440 recently at all no they've kept it 00:46:27.440 --> 00:46:30.280 they kept the medication as it is right 00:46:30.280 --> 00:46:32.000 we can maybe spend a bit more time 00:46:32.000 --> 00:46:34.240 looking at well really not not too bad 00:46:34.240 --> 00:46:36.599 just how how how do you see things 00:46:36.599 --> 00:46:40.200 progressing for for myself okay okay so 00:46:40.200 --> 00:46:42.680 if you've got that Rapport it makes a 00:46:42.680 --> 00:46:45.920 real difference and show appreciation 00:46:45.920 --> 00:46:49.760 cuz the staff do an amazing thing and in 00:46:49.760 --> 00:46:52.520 very difficult environment and I have to 00:46:52.520 --> 00:46:55.760 say thank you to the nursing staff and 00:46:55.760 --> 00:46:58.440 to the medics who do take such good care 00:46:58.440 --> 00:46:59.319 of 00:46:59.319 --> 00:47:02.400 us thank you for staying with us 00:47:02.400 --> 00:47:04.200 throughout this 00:47:04.200 --> 00:47:07.079 documentary we hope it has provided you 00:47:07.079 --> 00:47:10.119 with a deeper understanding of what it 00:47:10.119 --> 00:47:13.559 is like to live with dementia and has 00:47:13.559 --> 00:47:17.160 offered practical tips that you can now 00:47:17.160 --> 00:47:18.680 put into 00:47:18.680 --> 00:47:22.720 practice finally a big thank you from 00:47:22.720 --> 00:47:25.880 all the members at dementa ni for the 00:47:25.880 --> 00:47:27.559 work that you do 00:47:27.559 --> 00:47:30.880 that has a positive impact on the daily 00:47:30.880 --> 00:47:33.880 lives of real people like 00:47:33.880 --> 00:47:37.160 us matter have to assume we have 00:47:37.160 --> 00:47:40.480 capacity mhm is that the size of my 00:47:40.480 --> 00:47:44.359 bladder the size of my 00:47:50.160 --> 00:47:54.200 nose those words my feet went from 00:47:54.200 --> 00:47:58.839 beneath me could not believe what I 00:47:59.180 --> 00:48:00.800 [Music] 00:48:00.800 --> 00:48:03.359 I I 00:48:03.359 --> 00:48:06.720 saw I 00:48:09.559 --> 00:48:15.400 give it's a slippy R but I keep my feet 00:48:15.400 --> 00:48:19.359 bled I have the strength to hold the C 00:48:19.359 --> 00:48:21.559 I've been 00:48:21.559 --> 00:48:25.800 handed If I Stumble if my feet fall or 00:48:25.800 --> 00:48:27.680 if I need 00:48:27.680 --> 00:48:31.880 assistance I know the journey is long 00:48:31.880 --> 00:48:36.040 but it's so wor 00:48:36.040 --> 00:48:39.880 that my voice is mind I don't need 00:48:39.880 --> 00:48:43.800 someone to say what's on my mind though 00:48:43.800 --> 00:48:47.480 the love I have to help me is the best 00:48:47.480 --> 00:48:51.400 that you could find and I worry for my 00:48:51.400 --> 00:48:55.559 loved ones cuz the future is so wonder I 00:48:55.559 --> 00:48:58.720 stay strong 00:49:01.520 --> 00:49:02.200 it's 00:49:02.200 --> 00:49:06.240 ay but I keep 00:49:06.400 --> 00:49:10.359 my I have the strength to hold the C 00:49:10.359 --> 00:49:12.559 I've been 00:49:12.559 --> 00:49:17.400 handed If I Stumble my feet fall or if I 00:49:17.400 --> 00:49:21.480 need some assistance I know the journey 00:49:21.480 --> 00:49:23.040 long 00:49:23.040 --> 00:49:28.000 but it's the wor that distance 00:49:28.000 --> 00:49:33.079 [Music] 00:49:35.880 --> 00:49:39.559 [Music] 00:49:39.559 --> 00:49:41.200 I found my 00:49:41.200 --> 00:49:44.240 place surrounded by 00:49:44.240 --> 00:49:49.400 faces who understand 00:49:50.040 --> 00:49:53.200 me our worries and 00:49:53.200 --> 00:49:58.640 fears so disappear after 00:49:59.140 --> 00:50:02.079 [Music] 00:50:02.079 --> 00:50:07.559 Aver and a warm cup of tea