WEBVTT 00:00:08.505 --> 00:00:13.651 People with profound intellectual and multiple disabilities in old age 00:00:13.716 --> 00:00:23.809 What challenges arise for people with profound intellectual and multiple disabilities in old age? 00:00:24.706 --> 00:00:24.866 Yes, 00:00:24.866 --> 00:00:27.266 and perhaps a few general things 00:00:27.266 --> 00:00:30.166 that need to be taken into account 00:00:30.166 --> 00:00:31.966 when people with profound intellectual and multiple disabilities 00:00:31.966 --> 00:00:33.986 enter the phase of life known as old age. 00:00:33.986 --> 00:00:36.086 These are people 00:00:36.086 --> 00:00:42.626 who may have lived for many years 00:00:42.626 --> 00:00:45.046 in psychiatric institutions, 00:00:45.046 --> 00:00:49.486 and therefore have experience of institutions. 00:00:50.434 --> 00:00:53.354 who, I believe, 00:00:53.354 --> 00:00:55.434 may have experienced a great deal of trauma 00:00:55.434 --> 00:00:57.094 in their lives. 00:00:57.094 --> 00:01:00.334 All people with profound intellectual and multiple disabilities 00:01:00.334 --> 00:01:01.854 have one thing in common, 00:01:01. 854 --> 00:01:06.654 that they have been excluded in their lives 00:01:06.654 --> 00:01:09.934 from educational opportunities, 00:01:09.934 --> 00:01:11.754 opportunities for work. 00:01:11.754 --> 00:01:14.154 So many people over many years 00:01:14.154 --> 00:01:15.514 have been excluded. 00:01:15.514 --> 00:01:16.714 Especially 00:01:16.714 --> 00:01:17.814 when we think of the people 00:01:18.370 --> 00:01:19.730 in the former GDR, 00:01:19.730 --> 00:01:21.310 who had to live in psychiatric wards 00:01:21.310 --> 00:01:23.790 until the 1990s. 00:01:23.790 --> 00:01:24.910 A group of people 00:01:24.910 --> 00:01:26.730 who have experienced external control 00:01:26.730 --> 00:01:28.950 experienced external control. 00:01:29.986 --> 00:01:33.226 and has very small social networks, 00:01:33.226 --> 00:01:36.106 which become even smaller with age. 00:01:36.106 --> 00:01:37.926 So that, especially 00:01:37.926 --> 00:01:39.746 when people can no longer visit 00:01:39.746 --> 00:01:41.066 the day care center, 00:01:41.066 --> 00:01:43.746 social contacts break down here 00:01:43.746 --> 00:01:47.006 or family contacts also break down even more in old age 00:01:47.006 --> 00:01:48.346 of course, 00:01:48.346 --> 00:01:51.346 when elderly parents pass away. 00:01:51.346 --> 00:01:54.426 So, various kinds of broken contacts, 00:01:54.426 --> 00:01:57.666 which simply intensify in old age. 00:01:59.618 --> 00:02:00.678 Then, I believe, 00:02:00.678 --> 00:02:02.318 it is a group of people 00:02:02.318 --> 00:02:04.038 who are much more 00:02:04.038 --> 00:02:08.377 than people with attributed mental disabilities 00:02:08.377 --> 00:02:09.738 affected by this, 00:02:09.738 --> 00:02:11.778 that day-structuring services 00:02:11.778 --> 00:02:13.138 disappear with age, 00:02:13.138 --> 00:02:17.438 that often only care is provided here 00:02:17.438 --> 00:02:19.918 and few educational activities 00:02:19.918 --> 00:02:22.978 are provided for these people. 00:02:22.978 --> 00:02:25.798 And, of course, opportunities to participate 00:02:25.798 --> 00:02:28.598 in the community, in the parish, 00:02:29.698 --> 00:02:33.558 are even less possible here 00:02:33.558 --> 00:02:36.218 than for other people. 00:02:38.318 --> 00:02:41.418 Then, when we now 00:02:41.418 --> 00:02:44.938 look at age-related diseases, 00:02:44.938 --> 00:02:47.858 this group of people is, of course, 00:02:47.858 --> 00:02:50.898 still particularly vulnerable. 00:02:51.586 --> 00:02:52.206 So, first of all, 00:02:52.206 --> 00:02:54.346 that these typical age-related diseases 00:02:54.346 --> 00:02:56.026 set in much earlier 00:02:56.026 --> 00:02:57.706 and that they are added 00:02:57.706 --> 00:02:58.906 to the chronic diseases 00:02:58.906 --> 00:03:01.166 which these people already have anyway. 00:03:01.166 --> 00:03:05.866 And so these processes often 00:03:05.866 --> 00:03:07.226 occur at an age 00:03:07.226 --> 00:03:09.766 that is referred to as late adulthood. 00:03:09.766 --> 00:03:11.506 late adulthood. 00:03:11.506 --> 00:03:13.966 So in your mid-40s, 00:03:13.966 --> 00:03:15.946 age-related diseases occur here, 00:03:15.946 --> 00:03:19.066 especially when you think about dementia processes. 00:03:20.002 --> 00:03:22.142 And something that I believe 00:03:22.142 --> 00:03:23.482 also plays a major role 00:03:23.482 --> 00:03:24.802 is polypharmacy. 00:03:24.802 --> 00:03:25.902 This is a group of people who 00:03:25.902 --> 00:03:27.582 who, over the course of their entire lives, 00:03:27.582 --> 00:03:30.042 have had to take many medications 00:03:30.042 --> 00:03:34.082 which, of course, always have side effects 00:03:34.082 --> 00:03:38.062 and that now, in old age, these consequences 00:03:38.062 --> 00:03:39.542 are simply becoming much more apparent. 00:03:39.662 --> 00:03:45.342 And these chronic illnesses 00:03:45.342 --> 00:03:47.458 and the signs of aging 00:03:47.458 --> 00:03:49.238 that come with it 00:03:49.238 --> 00:03:51.738 often lead to this group of people 00:03:51.738 --> 00:03:54.578 that they do not reach a normal age, 00:03:54.578 --> 00:03:57.978 but possibly already in middle 00:03:57.978 --> 00:03:59.478 or even early adulthood 00:03:59.478 --> 00:04:00.678 lead to death. 00:04:01.546 --> 00:04:11.018 What questions arise at the end of life for people with profound intellectual and multiple disabilities? 00:04:12.322 --> 00:04:14.642 First, how can we 00:04:14.642 --> 00:04:19.522 detect these diseases very early on 00:04:19.522 --> 00:04:20.462 and combat them? 00:04:22.082 --> 00:04:24.362 But then, of course, there are also questions 00:04:24.362 --> 00:04:26.502 concerning the institutions. 00:04:26.502 --> 00:04:28.382 How can we succeed in 00:04:28.382 --> 00:04:30.682 ensuring that these people, 00:04:30.682 --> 00:04:33.142 when they have increased care needs, 00:04:33.142 --> 00:04:35.102 in our facilities 00:04:35.102 --> 00:04:37.442 until they pass away? 00:04:37.442 --> 00:04:39.722 How can we succeed in 00:04:39.722 --> 00:04:41.462 accompanying these people well 00:04:41.462 --> 00:04:45.482 during this last phase of their lives 00:04:45.482 --> 00:04:49.122 And what institutional development is needed here? 00:04:49.122 --> 00:04:50.202 What do we need? 00:04:51.074 --> 00:04:55.754 Precisely in terms of material conditions. 00:04:55.754 --> 00:04:58.774 But what do we need in terms of personnel? 00:04:58,774 - -> 00:05:01,554 How do we train our colleagues 00:05:01.554 --> 00:05:03.534 especially in terms of nursing care, 00:05:03.534 --> 00:05:08.654 in order to be able to provide this end-of-life care? 00:05:08.914 --> 00:05:13.414 And what is needed here in terms of networking 00:05:13.414 --> 00:05:16.094 with palliative and hospice services? 00:05:16.094 --> 00:05:18.214 How can we get help 00:05:18.214 --> 00:05:19.894 in our facilities? 00:05:20.610 --> 00:05:24.350 On the one hand, but on the other hand also 00:05:24.350 --> 00:05:27.070 with a focus on the people themselves. 00:05:27.070 --> 00:05:28.450 How can we succeed in 00:05:28.450 --> 00:05:31.010 taking into account the needs and wishes 00:05:31.010 --> 00:05:34.750 of these people at the end of their lives 00:05:34.750 --> 00:05:37.130 their final phase of life? 00:05:37.130 --> 00:05:38.510 How can we succeed in 00:05:38.510 --> 00:05:40.990 to communicate with these people 00:05:40.990 --> 00:05:45.330 with the help of assisted communication, for example 00:05:45.330 --> 00:05:47.490 create a living will? 00:05:48.290 --> 00:05:50.070 or even plan for the future 00:05:50.070 --> 00:05:51.990 for the end of life. 00:05:51.990 --> 00:05:55.070 And here I think it's very important 00:05:55.070 --> 00:05:59.310 that we have done good biographical work 00:05:59.310 --> 00:06:01.250 throughout their entire life. 00:06:01.250 --> 00:06:04.990 And we can draw good conclusions from this. 00:06:04.990 --> 00:06:08.850 What does this person need in the final phase of their life? 00:06:08.850 --> 00:06:09.950 What is good for them? 00:06:09.950 --> 00:06:12.610 Which people does he like to have around him? 00:06:12.610 --> 00:06:15.790 What would he like to 00:06:15.790 --> 00:06:17.990 perhaps still experience in this phase of his life? 00:06:18,754 And perhaps also, 00:06:19,874 what do we know about his statements, 00:06:22.854 --> 00:06:25.354 forms of expression when afraid, 00:06:25.354 --> 00:06:27.714 when feeling unwell, when in pain. 00:06:27.714 --> 00:06:28.634 Because that is something 00:06:28.634 --> 00:06:31.394 that is very important in the final phase of life, 00:06:31.394 --> 00:06:33.074 that we can combat it effectively. 00:06:34.138 --> 00:06:43.378 What tasks arise in work and educational settings when accompanying elderly people with profound intellectual and multiple disabilities? 00:06:44.162 --> 00:06:45.602 Yes, well, I had 00:06: 45.602 --> 00:06:47.162 already hinted at that a little. 00:06:47.162 --> 00:06:51.022 Institutional development is a big issue there, 00:06:51.022 --> 00:06:54.242 which needs to be driven forward. 00:06:54.242 --> 00:06:56.242 So what transition options 00:06:56.242 --> 00:06:57.782 do we provide for 00:06:57.782 --> 00:07:00.262 people with profound intellectual and multiple disabilities in old age? 00:07:00.262 --> 00:07:00.822 Perhaps 00:07:00.822 --> 00:07:02.702 they only attend the 00:07:02.702 --> 00:07:04.882 day care center 00:07:04.882 --> 00:07:07.622 or if that is no longer possible, 00:07:07.622 --> 00:07:12.482 what kind of daily structure do we offer them 00:07:12.482 --> 00:07:13.762 in the residential homes? 00:07:14.818 --> 00:07:18.518 And what kind of adapted support can we find 00:07:18.518 --> 00:07:20.438 for them until the end of their lives? 00:07:20.598 --> 00:07:23.038 And I believe 00:07:23.038 --> 00:07:26.818 that this also poses major challenges 00:07:26.818 --> 00:07:30.018 for the training and further education of employees. 00:07:30.018 --> 00:07:32.798 I believe we must 00:07:32.798 --> 00:07:35.294 train our employees 00:07:35.294 --> 00:07:37.334 employees in palliative care 00:07:37.334 --> 00:07:40.294 and hospice care. 00:07:40.294 --> 00:07:41.654 Some employees, 00:07:41.654 --> 00:07:43.994 who then act as coordinators, 00:07:43.994 --> 00:07:46.954 but I also believe that all employees 00:07:46.954 --> 00:07:50.194 must receive training in this area. 00:07:50.194 --> 00:07:57.114 Palliative care and hospice support 00:07:57.114 --> 00:08:00.514 must be implemented in our facilities. 00:08:01.890 --> 00:08:02.350 This means that 00:08:02.350 --> 00:08:04.990 we must set out on different paths 00:08:04.990 --> 00:08:07.670 at various levels. 00:08:07.670 --> 00:08:08.930 One of these is 00:08:08.930 --> 00:08:12.370 that we prepare ourselves for care measures 00:08:12.370 --> 00:08:14.790 that are important at the end of life. 00:08:14.790 --> 00:08:18.930 So, more specialized care measures. 00:08:18.930 --> 00:08:21.470 How do we position people 00:08:21.470 --> 00:08:23.270 who are dying? 00:08:23.270 --> 00:08:25.570 What do I need to know here, especially when it comes to 00:08:25.570 --> 00:08:29.510 eating and drinking? 00:08:32.322 --> 00:08:38.542 perhaps also with regard to tube feeding 00:08:38.542 --> 00:08:41.402 or perhaps not. 00:08:41.402 --> 00:08:45.442 So I need to know something here 00:08:45.442 --> 00:08:47.642 about these specific care measures 00:08:47.642 --> 00:08:48.522 at the end of life. 00:08:48.522 --> 00:08:51.722 Then this possibility must also 00:08:51.722 --> 00:08:53.902 be included in the creation of a living will 00:08:53.902 --> 00:08:55.122 for people with profound intellectual 00:08:55.122 --> 00:08:57.862 and multiple disabilities 00:08:57.862 --> 00:09:00.222 or even future plans at the end of life, 00: 09:00.222 --> 00:09:01.722 which should be carried out. 00:09:02.370 --> 00:09:05.910 And also educational opportunities 00:09:05.910 --> 00:09:07.530 for the people affected themselves. 00:09:07.530 --> 00:09:09.890 So how do I implement 00:09:09.890 --> 00:09:14.650 these training and continuing education courses on the topics of 00:09:14.650 --> 00:09:16.250 dying, death, and grief 00:09:16.250 --> 00:09:21.050 in adult education programs at institutions? 00:09:21.050 --> 00:09:25.190 And, of course, as an institution, it is very important 00:09:25.190 --> 00:09:27.970 networking with palliative and hospice services. 00:09:27.970 --> 00:09:30.410 So how can we learn from each other here? 00:09:30.946 --> 00:09:31.726 I believe that 00:09:31.726 --> 00:09:35.806 is also an important task of institutional development. 00:09:39.490 --> 00:09:45.530 Yes, and in practical terms, at the end of life 00:09:45.530 --> 00:09:49.170 of a person with a profound intellectual and multiple disability, 00:09:49.170 --> 00:09:53.310 we simply observe them closely. 00:09:53.310 --> 00:09:57.310 Observe them closely with regard to these symptoms, 00:09:57.310 --> 00:10:01.790 pain, shortness of breath, discomfort, nausea. 00:10:01.890 --> 00:10:06.698 Then, throughout the day, 00:10:06.698 --> 00:10:11.878 offer opportunities to rest, 00:10:11.878 --> 00:10:15.138 wellness activities, music, 00:10:15.138 --> 00:10:17.278 what kind of music does this person like, 00:10:17.278 --> 00:10:18.378 what do we know about it, 00:10:18.378 --> 00:10:20.138 what can I offer them, 00:10:20.138 --> 00:10:21.478 if they are not feeling well, 00:10:21.478 --> 00:10:24.198 offers from basal stimulation, 00:10:25.954 --> 00:10:27.254 certain massages, 00:10:27.254 --> 00:10:29.294 certain rubs, 00:10:29.294 --> 00:10:31.514 that can promote well-being 00:10:31.514 --> 00:10:33.594 or that can also help someone 00:10:33.594 --> 00:10:34.974 breathe better, 00:10:34.974 --> 00:10:37.494 help them relax. 00:10:37.494 --> 00:10:39.814 I am thinking here of possibilities 00:10:39.814 --> 00:10:41.794 breath-stimulating rubs 00:10:41.794 --> 00:10:44.014 or contact breathing, 00:10:44.014 --> 00:10:47.334 that can be given to a person here. 00:10:47.334 --> 00:10:51.694 But also possibilities for basic communication. 00:10:51.694 --> 00:10:56.642 Practically speaking, about grief, 00:10:56.642 --> 00:10:58.862 about fears, about starting a conversation, 00:10:58.862 --> 00:11:01.062 about basic possibilities. 00:11:01.062 --> 00:11:03.602 This can look like 00:11:03.602 --> 00:11:09.442 me complaining to someone, 00:11:09.442 --> 00:11:12.202 that I mirror them, 00:11:12.202 --> 00:11:14.002 how are you doing right now, 00:11:14.002 --> 00:11:17.102 that I communicate physically, 00:11:17.102 --> 00:11:19.122 about touch in communication, 00:11:19.122 --> 00:11:21.002 about fears, pain. 00:11:23.426 --> 00:11:24.666 And very importantly, 00:11:24.666 --> 00:11:27.246 that decisions about medical measures 00:11:27.246 --> 00:11:30.406 at the end of life are made responsibly. 00:11:30.406 --> 00:11:33.946 Always with the involvement of the person concerned, 00:11:33.946 --> 00:11:36.886 but also with the involvement of all the people 00:11:36.886 --> 00:11:38.746 around that person. 00:11:38,746 Relatives, associates, caregivers. 00:11:41,266 And I believe 00:11:42.886 --> 00:11:43.966 that it is very important 00:11:43.966 --> 00:11:47.646 that someone stays by the person's side 00:11:47.646 --> 00:11:49.666 until the end of their life, 00:11:51.106 --> 00:11:53.346 I believe that something very important, 00:11:53.346 --> 00:11:55.786 that we as an institution need to realize. 00:11:56.895 --> 00:12:06.931 What options are there for grief counseling? 00:12:08.306 --> 00:12:10.186 So I think it's very important 00:12:10.186 --> 00:12:12.846 that we implement a culture of mourning and remembrance in our institutions. 00:12:12.846 --> 00:12:16.086 a culture of mourning and remembrance in our facilities. 00:12:16.086 --> 00:12:19.326 This is also common practice in many facilities 00:12:19.326 --> 00:12:24.746 and many employees live this very intensely 00:12:24.746 --> 00:12:27.026 with their residents. 00:12:27,026 One aspect is the rituals of farewell 00:12:30,066 that are offered here. 00:12:34.546 --> 00:12:38.406 Depending on the orientation of the facility, this can, of course, 00:12:39.234 --> 00:12:47.074 be a memorial service or a mourning table, 00:12:47.074 --> 00:12:50.634 which is set up when a resident passes away. 00:12:51.154 --> 00:12:56.874 Rituals in the residential group, 00:12:56.874 --> 00:12:58.334 that can be performed here, 00:12:58.334 --> 00:13:01.294 such as talking about the person, 00:13:01.294 --> 00:13:03.094 lighting candles, 00:13:03.094 --> 00:13:05.094 painting pictures, 00:13:05.094 --> 00:13:08.794 listening to the deceased person's favorite music, 00:13:10.626 --> 00:13:19.286 implementing rituals, 00:13:19.286 --> 00:13:22.646 which, when a person 00:13:22.646 --> 00:13:24.726 or even when an employee dies, 00:13:24.726 --> 00:13:28.906 then it can be used 00:13:28,906 to accompany people in their grief. 00:13:32,146 Attending funerals 00:13:34,706 should be a matter of course, 00:13:36,286 open to all residents, 00:13:40.690 --> 00:13:44.110 and, of course, the wishes of the relatives 00:13:44.110 --> 00:13:45.690 are taken into account here, 00:13:45.690 --> 00:13:48.970 grave maintenance, cemetery visits, 00:13:48.970 --> 00:13:50.970 that this is also a matter of course 00:13:50.970 --> 00:13:54.670 for every resident, 00:13:54.670 --> 00:13:58.830 and also a culture of remembrance, 00:13:58.830 --> 00:14:02.390 that should be lived in institutions, 00:14:02.390 --> 00:14:04.430 places of remembrance, 00:14:04.430 --> 00:14:08.706 perhaps a place where pictures, 00:14:08.706 --> 00:14:11.446 of people who died in the dormitory 00:14:11.446 --> 00:14:12.746 are hung up, 00:14:13.602 --> 00:14:17.666 which can then be visited 00:14:17.666 --> 00:14:20.466 and people can talk about these individuals. 00:14:20.466 --> 00:14:22.766 Perhaps other places as well. 00:14:22.766 --> 00:14:24.626 In some institutions, there are 00:14:24.626 --> 00:14:26.606 perhaps also stones in the garden 00:14:26.606 --> 00:14:29.946 which contain the names of the deceased. 00:14:29.946 --> 00:14:33.786 Perhaps it is also a prayer service once a year, 00: 14:33.786 --> 00:14:35.506 a memorial service, 00:14:35.506 --> 00:14:39.650 at which the deceased residents 00:14:39.650 --> 00:14:41.230 are named. 00:14:41.230 --> 00:14:43.250 That could also be a possibility.