Developing awareness and supporting grief and emotional change

1. Developing awareness and supporting grief and emotional change Dr Sarah Fryer Clinical Neuropsychologist Mary Opoku, Assistant Clinical Psychologist

2. Why does brain injury affect mood? • Group exercise –talk in pairs about the last time you lost something, whether it was your keys or something that had special personal significance. Think about what you did when you lost it? Were there any stages you think you went through?

3. Wisdom from literature - what loss means to us as a society • ‘hopeless grief is passionless …. If it could weep, it could arise and go’ (Elizabeth Barrett Browning) • ‘For nothing now can ever come to any good’ (Auden) • ‘His wet cloth of face. They wrung out his tears. But his mouth betrayed you - it accepted the spoon in my disembodied hand That reached through from the life that had survived you’ (Hughes)

4. Stages and tasks of grieving: Bowlby’s stages of loss • Numbing (may be interrupted by outbursts of intense distress and/or anger) • Yearning and searching for lost figure (so in BI lost “me”) • Disorganization and despair • Greater or less degree of reorganization

5. Grieving • Stages of grief • No single pattern of grief • Typical stages (which may be moved through at any rate and in any order) are shock/denial, anger, despondency/despair, acceptance of an altered future with worry about the future, leading eventually to adjustment?

6. Why talk about loss in BI? Compound loss • Brain injury often thought of as involving multiple losses • Initial loss of independence and abilities in acute stage • More chronically losses of relationship, status, financial security, work life, home, expectations • Grief more likely to become ‘complicated or ‘stuck’ because losses may come in quick succession, without time to recover from one without facing next • Less resourced than ever to cope with them, e.g. problem solving skills • Clients may also appear to ‘fail’ to grieve because they are maintaining hope and so do not accept losses. This may be helpful way to think in the early days but less so later.

7. Grief and awareness • Denial understood as a psychological event with a purpose to protect self from a harm at a time when not ready • In brain injury lack of awareness or insight can also mirror denial • Anosognosia- lack of awareness of own impairments • May have poor awareness because have been in a protected environment such as hospital where impairment is often minimised • We may be seeing clients become more aware as they test out their skills once they return to their own home and communities

8. Additional challenges of pressure to adjust and accept • Life events trigger strong emotions in us all • We have evolved with stress as it has a purpose –to make us act, either by fighting back at a proem or escaping it • This is also true in brain injury. Whilst trying to grieve for what we’ve lost we’re also trying to adjust and makes changes to make a future possible. • This can lead to stress signs on top of the grief signs. • Can lead to split between ’old’ and ‘new’ self, and all positive features being linked with past and all new features as part fo bad present.

9. Case Study Patrick was injured in a road traffic accident, which resulted in the death of the other party. Patrick experienced loss of vision, cognitive deficits, disinhibited behaviour, inability to rationalise his thoughts and think abstractly. He experienced bouts of depression from the loss of future plans, which included the chance to set up his own business (which had always been his ambition prior to his loss). In addition, he experienced loss of relationship with close relatives and loss of affection towards his wife. Patrick worked as an engineer and was the main provider in his household prior to his accident. Subsequent to the accident, he was unable to fulfil any of his household responsibilities. With no surprises, Patrick and his wife experienced great difficulties in adjusting to this new world of countless changes. Patrick’s wife had to take on his household responsibilities to keep the family together. This was a huge challenge for her as she always played the passive role in their relationship. These changes proved to be a constant reminder of their losses.

10. How can we understand and help? Within your groups discuss/identify: • Feelings Patrick might be experiencing after his loss • His wife’s feelings Now consider a time when you have seen a client face a challenging situation; • What did you do that seemed to help? • What didn’t help? • What were the challenges you faced while working with the client? • How might working with someone like Patrick make you feel?

11. Grieving, mourning and adaptation to loss It will be difficult to say/suggest how or when someone should complete their grieving process. However, it will interesting to look at Worden’s (1998) tasks of grieving: • Accepting and acknowledging the reality of the loss • Experiencing and working through the pain of grief • Adjusting to the world in which the loved one is no longer present • Investing in the new world Note that Worden’s task of grieving cannot necessarily be generalised to everyone we work with as you can’t pick one model to explain grieving.

12. Accepting and acknowledging the reality of the loss • Deny the facts of the loss • Retain possessions that person (BI) used to use before the loss • Remove all reminders of the event • Selective forgetting • Deny loss is irreversible • Have hope that the person you knew will come back (spiritualism)

13. Experiencing and Working through the pain • Denying the pain • Avoiding painful thoughts • Denying the need to grieve

14. Adjusting to the world in which the loved one is not present • Develop new skills • Take on the roles that were formerly performed by loved one • Develop or form a new relationship.

15. Investing in the new world • Withdrawing emotional energy from what is lost and reinvesting in a new world. • Being able to move on and form new positive memories. Note that this can be quite a difficult task.

16. Thought… Even though it may be interesting to look at Worden’s four tasks of grieving, it is important to bear in mind that others will argue that ‘mourning never ends. Only as time goes on, it erupts less frequently’ (Bowlby, 1980)

17. Supporting adjustment • Just as there is no single “typical” BI unfortunately no one model of what someone should be doing to move through their adjustment! • There are however key things that we can do that are likely to help

18. Our role • Providing a trusting relationship that is open and shows respect for the person’s identity • Allowing the person to show negative emotions can be helpful in tackling denial and avoidance. Feeling tearful and angry can be very normal and actually healthy. In early stages people may not need “treatment” but a good listening ear. • Helping people become aware of their difficulties – we may way to protect but there is evidence that telling people they have impairments is often of little use – trying and failing is sadly a more powerful way to become aware of limitations. Must however be timed – not too much too soon, and always with support.

19. What to do when it all goes wrong? Problems that will need referral to specialist services.

20. Defining disorder • Prevalence of depression: 24% Guth (2000) to 70% (Kersel, Marsh, Havill and Sleigh, 2001) • Onset of depression may be more likely to occur after initial phase of recovery (Perino et al., 2001) and therefore after service contact ended (e.g. evidence at 15 years, Thomsen, 1984)

21. Defining disorder • Lezak (1987). Anxiety is most common in the second 6 months after injury. • Kinsella et al (1988). 26% of sample interviewed within 2 years of injury clinically anxious, and older age a sig. predictor of anxiety? • Tyerman and Humphrey (1984). Sample of 25 severe TBI patients, 44% were anxious • Brooks (1987). 134 TBI sufferers; 65% were anxious and 63% depressed. The problems become worse over a 5 year period.

22. Depression: definition • Prevailing low mood • Tearfulness, withdrawal from activity • Biological signs: reduced energy, appetite, sleep disturbance, diurnal variation in mood • Thoughts of guilt, worthlessness • Suicidal thoughts • Not all may be present, but by definition must be enough symptoms to affect functioning

23. Anxiety disorders: core features • Worry what ifs? • Physiological signs: breathlessness, hot, sweats, heart racing, restlessness (in worst cases manifest as panic attack when fear of losing control - ‘my heart’s going to explode’) • Altered attention/concentration • Avoidance • Vigilance to feared signs

24. Post-traumatic stress disorder • Response to experiencing situation where life or physical identity of self or other at risk • Experience it as helpless at time • Not typical in BI due to unlikelihood of recalling the trauma • May be traumatised by islands of memory or later events, e.g. waking in restrained position/psychiatric hospital, being repeatedly told by family details of injury and proximity to death • Common symptoms fall into categories of re-experiencing, arousal and avoidance.

25. Alcohol dependence • Biological basis to addiction increases risk after BI? e.g. differential reinforcement patterns • Less tolerant after BI? • All previous syndromes associated with increase in alcohol use, particularly PTSD • Dilemma in BI, how much is too much when symptoms of intoxication overlap with and exacerbate BI impairments

26. Other disorders • Psychosis- some evidence increased risk after BI • Obsessional compulsive disorder - this is not simply repetitive behavior, must be a worry driving it, e.g. if I see a motorbike I must repeat a prayer 5 times or they will die • Eating change - but beware eating a physical as well as psychologically driven behavior, e.g. in MS appetite drive may be absent

27. Anger: symptom or problem • Anger appears in definition of all above disorders and is also a part of the normal stress and adjustment range • Becomes a problem depending on fucntional impact and outcome, e.g. a lot of challenging behavior when observed will have a purpose • Anxiety interpreted as aggression and then maintained by fear in others? • Tend to differentiate instrumental and angry aggression • Episodic dyscontrol and unusual seizure types should be considered if appears completely random

28. Treating mental health problems after brain injury: cognitive behavioral therapy • Looks at unhelpful patterns of thinking and behaving which may drive and maintain unhelpful emotions • Basic premise: we all have “schema” or beliefs we hold about ourselves, the world/others and future • These act as a filter to organize our experiences • E.g. thinking ‘I’m fat’ will lead to a tendency to attend more to events that support that belief and negative interpretation of ambiguous events.

29. CBT model Thinking Behaviour Emotion Physical

30. Summary • Range of disorders which can appear after BI is as wide as range that can appear in general population • In BI however may be more common and more severe • In BI population risks of poor outcome and at worst suicide higher, perhaps because a population with less support and also BI has a direct adverse effect on ability to cope