Psychological Interventions in Response to Stress & Distress in Dementia 16 th June 2014

1. Psychological Interventions in Response to Stress & Distress in Dementia 16th June 2014 Dr Lisa Ronald, EPM, NHS Education Scotland Lisa.ronald@nes.scot.nhs.uk

2. Psychology of Dementia Team • Who are we? • Aim to: • Increase Access to Evidence-Based Psychological Interventions and Therapies for People with Dementia, Families and Carers • Increase Access to Evidence-Based Psychological Interventions and Therapies for Stress and Distress in Dementia

3. Resources • Enhanced practice resource • Cognitive rehabilitation (staff and carers) • Carers resource

4. Training • CST • ACE-III • 2-day Stress and Distress • Bite-sized mini modules • E-learning resources – Acute Staff, Remote and Rural

5. Intended Learning Outcomes • To develop knowledge that disorientation, confusion, memory problems and psychosis can alter a persons reality. • To understand how loss of memory can impact on a person’s sense of reality when they have dementia. • To be aware of how important life events and our past can be in understanding the person’s sense of reality. • To understand that the person with dementia’s sense of reality may differ to ours and can be a cause of distress. • To reflect on someone you have cared for recently, considering their reality and how this was causal to their distress.

6. Promoting Excellence Framework • Knowledge and understanding of the causes and signs of stress and distress for the person with dementia, their family and carers • Identify and respond sensitively to verbal and non verbal cues from the person with dementia, their families and carers that may indicate psychological distress • Understand the possible causes of personal or family distress linked to the emotional impact of the symptoms of dementia • Take a person-centred approach to assessing distressed behaviour which may be perceived as challenging • Understand the complex behavioural changes and their causes that indicate people with dementia are distressed. • Take a person-centred approach to assessing distressed behaviour which may be perceived as challenging • Use knowledge of the person with dementia in responding to their expression of stress and distress.

7. Why is it important? • Understanding someone’s altered reality can assist us as carers in understanding why someone may be presenting as distressed • If we know what is causing someone’s distress then we are better equipped to reduce this distress by intervening appropriately based on the cause identified. • We can sometimes say/do things that exacerbate someone’s distress as the person perceives us as not understanding their distress. • How would you feel if you were crying at work, and your colleagues walked past you or didn’t ask why you were upset?

8. What is the person’s world or altered reality? • A person makes sense of their experience to find meaning and to understand their world. We all do this as human beings, even from infancy. • A person with dementia may have an altered reality to the real/actual reality, but is essentially their experience and their understanding. • This can fluctuate within a short period of time, within minutes, over hours or even change between each day. • The person’s reality is essentially their beliefs and memories within that precise moment in time and how they make sense of them.

9. Why do the individuals we care for have altered realities? • Dementia is a disease that impacts on the brain and brain processes. • Memory can be impaired mildly at initial stages, to more severely impaired later on. Not recalling certain events can alter their reality (e.g., their mother died). • Disorientation can make people confused as to where they are and they therefore try to make sense of it based on past experience (automatic). • Psychosis or hallucinations can cause individuals to believe things are happening in the environment or to themselves that are not actually occurring. Psychosis and hallucinations occur due to chemical imbalances in the brain or due to impaired visual abilities. • Sometimes events in the environment can trigger a belief or misunderstanding in someone with dementia (shouting).

10. The Time Machine (McKenzie & James, 2011) This exercise aims to demonstrate how memory impairment can alter someone’s reality and trigger distress. Note Please open yourself up to this exercise to gain the full benefit. Contribution from everyone is important. Warning, this exercise may be upsetting for some people.

11. Feedback following the Time Machine

12. Ex Memoria Now watch the short film Ex Memoria. Consider and reflect on Eva’s altered reality. What is Eva’s altered reality? What have been triggers to this reality? What does she say or do, to indicate that her reality is altered?

13. Feedback from Ex Memoria Exercise

14. Your working practice • Consider how often you reflect on understanding the person you care in terms of their reality when distressed. • Do you have time to do this in your work place? If not, can you think of a way you may be able to do this more frequently? • Think of someone who you had to manage recently who was displaying distressed behaviour. • What was their altered reality? • What environmental triggers were involved? • Life story or history involvement? • Personality?

15. Summary • It is important not to prompt the person with dementia to remember events if this causes them distress. • Strong emotive memories are most often ones that are remembered, despite severe memory problems. • Severe memory problems, confusion, psychosis and triggers in our environment can cause an altered reality. • Try to consider what the persons altered reality is when they present with a distressed behaviour. • Knowing the person’s life story and history will assist you in understanding their reality. • By considering this, your management of their distress will be person-centred care.

16. Questions?

17. Intended Learning OutcomesWere they met? • To develop knowledge that disorientation, confusion, memory problems and psychosis can alter a persons reality. • To understand how loss of memory can impact on a person’s sense of reality when they have dementia. • To be aware of how important life events and our past can be in understanding the persons sense of reality. • To understand the person with dementia reality may differ to ours and can be a cause of distress. • To reflect on someone you have cared for recently, considering their reality and how this was causal to their distress.

18. References The Time Machine (MacKenzie & James) 2011, Three Motion Media. ExMemoria (Appignanesi, J) 2006,The Bradford Dementia Group.