1. Quality Education for a Healthier Scotland Psychological Interventions in Dementia Care 2 nd December 2014 Dr Lisa Ronald, EPM, NHS Education Scotland Lisa.ronald@nes.scot.nhs.uk

2. Quality Education for a Healthier Scotland Intended Learning Outcomes 1.Introduce the Psychology of Dementia Team. 2.Sign-post to existing resources and training. 3.Outline the relevant policy and political drivers specific to psychological interventions in response to stress and distress 4.Provide an overview of the evidence-base for psychological interventions. 5.To gain an understanding of stress and distress in dementia in terms of how it may present and the potential causes. 6.To understand stress and distress from the perspective of the person with dementia, giving consideration to the person's altered state of reality.

3. Quality Education for a Healthier Scotland Psychology of Dementia Team Who are we? Aim to: 1.Increase Access to Evidence-Based Psychological Interventions and Therapies for People with Dementia, Families and Carers 2.Increase Access to Evidence-Based Psychological Interventions and Therapies for Stress and Distress in Dementia

4. Quality Education for a Healthier Scotland Resources Enhanced practice resource Cognitive rehabilitation (staff and carers) Carers resource

5. Quality Education for a Healthier Scotland Training CST workshops ACE-III (www.fom.gla.ac.uk/aceiiitrainer/) 2-day Stress and Distress Bite-sized mini modules E-learning resources – Acute Staff, Remote and Rural

6. Quality Education for a Healthier Scotland POD Workstream S&D T4T Carers group manual/ 1:1 Remote & Rural e-resource Expertise S&D 2-day training roll outs Enhanced practice resource Carers resource manual/ 1:1 GP workshop ACE-III online trainer Remote & Rural e-resource Enhanced Skilled Resource chapter Bite-sized learning modules Acute care e-resource CST training Skilled

7. Quality Education for a Healthier Scotland Stress and Distress in Dementia

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9. What is Stress and Distress in Dementia? “Any behaviour, including apathy, that causes emotional distress within the person with dementia, their carer or others in the environment” (MacKenzie, 2014)

10. Quality Education for a Healthier Scotland Examples of Behaviour 1 Physical Aggression (hits, kicks, scratches, grabbing) 2 Verbal Aggression (insults, swearing, threats) 3 Self Harm (cuts/hits self, refuses food/starves self) 4 Shouting/Screaming/Crying out 6 Perseveration (constantly repeating speech or actions, repetitive questioning or singing) 7 Restlessness (fidgets, unable to settled down, pacing, `on the go`) 9 Lack of motivation/withdrawing (difficult to engage, shows no interest in activities, apathy) 10 Clinging (follows/holds on to other residents/staff) 11 Interfering with other people 12 Hoarding (possessions, rubbish, paper, food) 13Suspiciousness (accusing others) 14Lack of Self Care (hygiene problems, dishevelled) 16 Spitting 17 Faecal Smearing/Inappropriate Urinating (in public, not in toilet) 19 Stripping (removes clothes inappropriately, flashes) 20Inappropriate Sexual Behaviour (masturbates in public, makes inappropriate `advances` to others)

11. Quality Education for a Healthier Scotland Causes

12. Quality Education for a Healthier Scotland Effects if left Un-treated

13. Quality Education for a Healthier Scotland Evidence-Base for Psychological Interventions Research examining the efficacy of interventions is parts in comparison to other major chronic degenerative conditions Recent political drivers have highlighted and supported the need for further research and development of evidence-based interventions. Scottish Dementia Clinical Research Network (www.sdcrn.org.uk/)www.sdcrn.org.uk/ Alzheimer Scotland Dementia Research Centre (www.alzscotdrc.ed.ac.uk/)

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16. Stress and Distress Training Newcastle Clinical Model (which is an evidence-based formulation-led intervention) Incorporate evidence-base in terms of preventing and responding to Stress and Distress. Aimed at Health and Social Care staff working at the enhanced and expertise level of promoting excellence. Training has been shown to enhance knowledge and skills as well as reduce misattributions as to the causes of Stress and Distress Also reduced psychotropic medication prescribing within a carehome setting (Aaen, 2013)

17. Quality Education for a Healthier Scotland Altered Reality in Dementia Understanding someone’s altered reality can assist us 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?

18. Quality Education for a Healthier Scotland 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.

19. Quality Education for a Healthier Scotland Why do the individuals with Dementia 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).

20. Quality Education for a Healthier Scotland 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. The Time Machine (McKenzie & James, 2011)

21. Quality Education for a Healthier Scotland Feedback following the Time Machine

22. Quality Education for a Healthier Scotland Useful Educational Resources Darkness in the Afternoon, The Dementia Services Development Centre Ex Memoria (Appignanesi, J, 2006), The Bradford Dementia Group

23. Quality Education for a Healthier Scotland Summary Introduced the Psychology of Dementia Team Outlined the relevant policy and political drivers specific to psychological interventions in response to stress and distress Provided an overview of the evidence-base in relation to non- pharmacological interventions for stress and distress Demonstrated the Time Machine to further develop understanding of stress and distress in dementia in terms of an individual’s altered reality Described how this understanding can aid planning of person- centred intervention approaches

24. Quality Education for a Healthier Scotland Questions?

25. Quality Education for a Healthier Scotland References Banerjee (2009) The use of anti-psychotic medication for people with dementia: Time for action, London: Institute of Psychiatry, King’s College London. British Psychology Society (2013) Alternatives to antipsychotic medication: Psychological approaches in managing psychological and behavioural distress in people with dementia, Leicester: Author. Cohen-Mansfield, J. (2013) Nonpharmacological treatment of behavioural disorders in dementia, Current Treatment Options in Neurology, 15(6), 765-785. James, I.A. (2011) Understanding behaviour in dementia that challenges: A guide to assessment and treatment, London: Jessica Kingsley. NICE/SCIE (2006) Dementia: Supporting people with dementia and their carers in health and social care. Clinical Guideline 42, National Institute for Health and Clinical Excellence and the Social Care Institute for Excellence. SIGN (2006) Management of patients with dementia. A national clinical guideline, Scottish Intercollegiate Guidelines Network. The