‘Losing the books of life’

1. ‘Losing the books of life’ Buijussen .H (2005) Simplicity of Dementia

2. How memory disappears - Buijssen

3. Carl Rodgers : Person Centred Approach (1951) • Empathy • Congruence • Unconditional Positive Regard (Lorna Coulson – Plymouth Based Person Practitioner (www.beingyou.me)

4. Dementia Detectives • We need to use empathy to communicate with a person who struggles with expressing words • They may use muddled words • They may be slow to talk • They may walk over to something • They may be agitated. • We can be most helpful when we try to work out what they need rather than being dismissive.

5. Empathy exercise – how would you feel if you were not heard? With a buddy Tell the person beside you where you last went on holiday Use only gestures and no words The only sound should be the person guessing

6. Self regard • Do people with dementia have good self regard? • What words do they use about themselves?

7. Congruence or genuineness Congruence Rogers describes a ... “congruent, genuine and integrated person”. ..who does not either intentionally or unintentionally hide behind a façade or front; that he or she actually is the person they are feeling themselves to be at the time.” (Person Centred Approach South West website )

8. Unconditional Positive Regard(or unconditional acceptance) Clients with dementia may not be valuing themselves, as they feel they are losing sense of self, losing control. As workers we can counteract this by honest caring acceptance. Again, be careful what you say as so often people understand more than we know.

9. Genuineness Tell me of a time where you came across Someone who was not genuine? When was it? How did you feel about them?

10. Puzzling Behaviours • Aggression • Agigitation • Crying • Shouting • Night time waking

11. Scenerios • In groups, see if you can : • Find out what the trigger behaviour is • Where might the person be in lifespan • What strategies can we use to calm the person ?

12. Repetitive Movements • May rock backwards and forwards, • Calling out the same sound or word ‘help’ ‘take me home’ • Have excessive hand activity, constantly wrings their hands, pulls at their clothes, taps or fidget – try to get out of bed • Have periods of physical inactivity during which the person remains still, with their eyes open but not focused on anything

13. Older people often need less sleep than younger people • Dementia can affect people’s body clocks

14. Suspicion

15. Hiding or Losing things • People with dementia sometimes hide things and then forget where they are – or forget that they have hidden them at all. • The wish to hide things may be due to feelings of insecurity and a desire to hold on to what little the person still has.

16. Trailing & Checking • Living with dementia makes many people feel extremely insecure and anxious. This can result in the person constantly following their carers or loved ones around, or calling out to check where they are. • A few moments may seem like hours to a person with dementia, and they may only feel safe if other people are nearby.

17. Wandering/ restless • Pacing up and down – Pacing may indicate that the person wants to use the toilet but is unable to tell you. Try asking the person whether they need to use the toilet, or lead them towards it. If they are adamant that they want to pace, try to find somewhere they can walk safely. • Become restless because they need more physical activity • Mix night and day

18. Crying & shouting out • They could be in pain or ill • may feel lonely or distressed • If the person shouts out at night, a nightlight in the bedroom may be reassuring

19. Tips • Don’t take it personally • Try to stay calm and don’t enter into an argument • Show them you are listening • Try to distract them • Give them space if they become violent • Walk away if needed • Triggers ?? • Signs

20. Attachments Anxious people may need to be reassured many times. This may be … • Verbally • Sensing the space, people and surroundings • Touch and comforting • Visual prompts • Special Objects

21. Security and end of life • People with advanced dementia can be complex to work with. • They may have ‘young’ needs but we can be criticised if we are infantilising • It is a tricky path to walk. • Buijssen talks honestly about this in ‘ The Simplicity of Dementia’

22. Use touch, to hold, to stroke gently, to achieve eye-contact, to try to make them smile, to soothe them when they cry and to make sure they are comfortable. • Getting to know someone in end-stage dementia requires us to use these same set of skills. • We need to recognise that we are caring for someone who has a long life behind them and many stored memories and experiences. If we can find a bridge into these memories we can find a way into nurturing the spirit at this final stage of life.

23. Naomi Feil: “Empathy builds trust, reduces anxiety, and restores dignity” (2012) The Validation Breakthrough Communication Breakthrough with Gladys