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Talking to individuals with Down syndrome about a diagnosis of dementia, Dr Karen Watchman, IASSIDD, Rome November 2013
Talking to individuals with Down syndrome about a diagnosis of dementia, Dr Karen Watchman, IASSIDD, Rome November 2013
Talking to individuals with Down syndrome about a diagnosis of dementia, Dr Karen Watchman, IASSIDD, Rome November 2013
Talking to individuals with Down syndrome about a diagnosis of dementia, Dr Karen Watchman, IASSIDD, Rome November 2013
Talking to individuals with Down syndrome about a diagnosis of dementia, Dr Karen Watchman, IASSIDD, Rome November 2013
Talking to individuals with Down syndrome about a diagnosis of dementia, Dr Karen Watchman, IASSIDD, Rome November 2013
Talking to individuals with Down syndrome about a diagnosis of dementia, Dr Karen Watchman, IASSIDD, Rome November 2013
Talking to individuals with Down syndrome about a diagnosis of dementia, Dr Karen Watchman, IASSIDD, Rome November 2013
Talking to individuals with Down syndrome about a diagnosis of dementia, Dr Karen Watchman, IASSIDD, Rome November 2013
Talking to individuals with Down syndrome about a diagnosis of dementia, Dr Karen Watchman, IASSIDD, Rome November 2013
Talking to individuals with Down syndrome about a diagnosis of dementia, Dr Karen Watchman, IASSIDD, Rome November 2013
Talking to individuals with Down syndrome about a diagnosis of dementia, Dr Karen Watchman, IASSIDD, Rome November 2013
Talking to individuals with Down syndrome about a diagnosis of dementia, Dr Karen Watchman, IASSIDD, Rome November 2013
Talking to individuals with Down syndrome about a diagnosis of dementia, Dr Karen Watchman, IASSIDD, Rome November 2013
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Talking to individuals with Down syndrome about a diagnosis of dementia, Dr Karen Watchman, IASSIDD, Rome November 2013

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  • Literature, and my own research suggests that pwds typically do not have a diagnosis of serious illness shared with them. Yet we know that statistically people with DS are far more likely to develop dementia an at a younger age than those with a different kind of learning disability or with no learning disability at all. Will introduce a model for breaking bad news to people with LD ad then look at how we have adapted these guidelines to help people with dementia make sense of their changing situation.
  • Work has been carried out about breaking bad news of other serious illnesses such as cancer. Here is it shown that ….Typically bad news such as this is not shared – ‘he wouldn’t understand’ , or someone is told quickly and we move on because it is difficult for us, ‘ we don’t know how she will react’, he will just give up’, I think someone else should tell him’, his family don’t want him to be told anythign. But not telling someone people don't understand changes it is more difficult for them to cope. e about bad news does not make the bad news disappear.
  • Work has been carried out about breaking bad news of other serious illnesses such as cancer. Here is it shown that ….Typically bad news such as this is not shared – ‘he wouldn’t understand’ , or someone is told quickly and we move on because it is difficult for us, ‘ we don’t know how she will react’, he will just give up’, I think someone else should tell him’, his family don’t want him to be told anythign. But not telling someone people don't understand changes it is more difficult for them to cope. e about bad news does not make the bad news disappear.
  • Prep – plan setting, find out how much patient knows and wants to knowWarning shot ‘I have some bad news for you ‘ because we know what this means Small pieces of info at a time and check understandingFollow up for more infoBut to say’ I am afraid the test results are not good’ to person who does not know what this means…Challenge has been to develop a framework for assessing what and how much someone with DS should be helped to understand at any one time. Need to knew their preferences and concerns and why family may not want them to be told - -are they protecting the person or protecting themselves from a difficult situation. In reality an explanation that the person is no longer able to make a cup of tea on their own may mean more than an explanation of the process of dementia.
  • No one size fits all – everyone is different, peoples understanding of bad news will also be different, to tell someone they have dementia may have no meaning – to tell them that their favourite television programme is not on may be disastrous. Core premise is that any new information must fit in with their current experience. Need to build on their framework of knowledge. To do this we need to establish what the person has, what will make sense now what may make sense later and what may never make sense. What are their chunks of knowledge?Some will link to their background knowledge, their past. Someone with DS who has a terminally ill parent, the changes will help to built their ‘what is happening now’ section, help to look after mother, visit her. In the future if their father also dies they will have this background knowledge and will be better prepared – doesn’t make it easy of course but the framework has been built. With dementia, this framework disappears, it shrinks. What may be a previous memory, even long term is seen as a reality or current experience. Other (middle) relate to what people experience now. These are easiest to explain and understand. This is the future – this will depend on intellectual capacity and understanding of time. Perception of the future may also be incorrect. If this person has little or no chunks about the future then there is little to be gained in telling them what will happen in the future. It is only useful to say some one has ‘dementia’ using the word dementia if their background knowledge included this understanding. Otherwise stick with the present. Needs to be a team effort to know whether and how new information is processed. And to understand how someone can be helped to understand . People benefit from understanding current changes, some form anticipatory bit not always. During early stages people are more likely to notice that things are changing for them may need help to understand this is part of the illness. Pwds have as much right to be involved in decisions made about their future as we all do. But in time will lose capacity to make some decisions. So important to establish their views and preferences early.
  • Will show how using this model Tom can be supported to maximise his existing (past) knowledge and his current awareness.This is different from the linear stepped approach that the model recommends for breaking bad news when the person does not have a cognitive impairment. Typically for example ther. Usually our framework of knowledge grows over time, not with dementia. Tom 55, dad died 8 years ago and lives with mum – mutual care. Diagnosed with Alzheimer's disease. Becoming increasingly confused and has difficulty with stairs he has commented a couple of times ‘my heads wrong’.Mum diagnosed with lung cancer and is waiting to move to hospice. Tom has accommodation in group home shared with two others and staffed. Tom Further changes – his mum will die, he may move to another care setting, lose more skills and need moresupport.
  • Lets use the framework, need to include as many as possible – professionals and siblings to understand how Tom copes with changes and how they think he experiences thewrld. Of course there may not always be family or even professionals This might be what toms background chunks of knowledge look like.
  • This ishis knowledge of what is happening right now.
  • And this, much smaller, his knowledge of the future. To help him understand present and future probably important that he has awareness of what is happening with his mum and his home. His understanding of the future is wrong so that facts need determined. Can he go back home and live with team of paid carers. To stick with the known – his mum will not get better and will die – protecting him form this will not prevent it form happening. Toms siblings may not want home to know that their mum is dying- they may also need support to understand that not knowing is adding to Toms distress. New chinks of infomration to add to toms framework of knowledge are
  • This does not have to be verbal. Frequent hospital visits are important. If Tom has an awareness of what dementia mean he needs a simple explanation in words that he can relate to. Otherwise use his words ‘my heads not right’ because he has an illness with reassurance that he is getting help.Toms ability ot understand the future will deteriorate. To express his opinion about his future – he needs to talk about it now Being able to do something for his mum is very important – he can take her small things to the hospital and when she is in a hospice maybe he can do more for her. In the future when his mum has died and he forgets this – he does not have to be reminded everytime he mentions her. His caers should always know his framework of knowledge
  • And life story work
  • Transcript

    • 1. Talking to individuals with Down syndrome about their diagnosis of dementia
    • 2. Forthcoming Book - 2014 Chapter 11: Sharing the diagnosis of dementia: breaking bad news to people with a learning disability Irene Tuffrey-Wijne Karen Watchman
    • 3. Breaking bad news Tuffrey-Wijne, 2012
    • 4. Typical process (without cognitive impairment) Preparation Warning shot Break news in small pieces Follow up information
    • 5. Framework of knowledge Background (Past): Present: Foundation of knowledge Framework of knowledge Doctors make ill I don’t want to get people better out of my chair When people get old I am confused. they get forgetful My mum had dementia and she died I used to live with my Dad before I got my own flat I like looking at my photographs I am scared walking across the floor Future I won’t get better I won’t be able to go back to work anymore. I am going to hospital tomorrow I don’t want to go to the day centre next week
    • 6. Tom • Received diagnosis • Increasingly confused ‘my head has gone wrong’ • Mum has terminal cancer – he doesn't know • Emergency change in accommodation • Further changes ahead • How can Tom be supported to understand these changes?
    • 7. Tom’s background knowledge I have always lived with Mum and I like it Mum looks after me Mum needs me, I help her My sister left home to get married I feel safe with Mum Mum has been in bed a lot My head has gone wrong I stopped going to the shop because I gave the wrong money I have a brother and sister but don’t see them much
    • 8. Tom’s present knowledge I find it difficult to make the tea I don’t like this house Mum is in hospital I am in the wrong house I don’t know who the people are in this house I want to be with Mum I forget things I am frightened I am upset My brother and sister are coming to visit I like that nurse I am confused
    • 9. Tom’s understanding of the future Things will be the same as before I will go home soon Mum will come home soon Mum and I will live together forever
    • 10. Information to add Yes you miss living with your Mum She is very ill You are correct, your ‘head is not right’ (using Tom’s own words) Mum is not going to get better Right now it is not possible to live at home You will need extra help because your ‘head is not right’
    • 11. Tom • Initial reluctance from brother and sister • Mum died in hospice after regular visits from Tom • Tom was supported to attend her funeral • Moved to smaller group home with higher staff ratio and night time provision • Continued to talk about his head not working which his peers could also relate to and support • Staff consistency and knowledge of Tom’s framework of understanding proved essential
    • 12. Challenges • Provision of appropriate postdiagnostic support • UK dementia strategies say everyone is entitled to know of their diagnosis • Need to share diagnosis in appropriate format and within persons current framework of understanding • Further evidence needed and testing of model
    • 13. Thank you Dr Karen Watchman, Alzheimer Scotland Lecturer in Dementia, University of the West of Scotland Email: Karen.Watchman@uws.ac.uk Twitter: @karenwatchman Web: www.learningdisabilityanddementia.org

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