Managing the Psychological Effects of Living with a Brain Tumour

1. Managing the Psychological Effects of Living with a Brain Tumour Nick Black Consultant Clinical Psychologist Winchester and Eastleigh Healthcare Trust

2. Outline • The context of psychological issues • Direct effects of a brain tumour and treatments on cognitive functioning and behaviour • eg on memory/organisation • Indirect effects • Emotional Adjustment • Relationships • Management approaches • Where to get help

3. The Journey • Age, individual circumstances and characteristics, different symptoms and issues re the illness • Diagnosis, treatments, experiences of being in hospital, eg fellow patients • Outcome: cure to life limiting • Recurrence?

4. Journey in Family Context • Partner • Parents • Children • Brothers and sisters….. • Health professionals, social services, independent sector, church….

5. Who Provides Psychological Support? • Starts at home • All health/ social care professionals… • 4 tiers of Psychological Care • All trained staff • Senior clinicians with additional training and experience • Counsellors • Specialists eg clinical psychologists/ psychotherapists/ psychiatrists

6. Psychological Support • A Dream? • Reality?

7. Direct Effects of the Tumour • Impacts on Structures of the Brain and Brain Processes • Eg Jake • Referred to child psychologist as not performing so well at school • Reduced performance on cognitive testing • Observation: dragging a foot when walking • Psychologist referred to neurological services

8. Direct Effects of the Tumour, Radiotherapy and Surgery • Can result in residual cognitive problems • Eg Jake • Had his surgery and passed his GCSE’s relying upon earlier learning • However, he still had problems in • Learning and remembering • Executive functioning

9. Symptoms of Brain Tumour incl. • Headaches • Seizures • Eye problems - floating shapes or tunnel vision • Changes in personality or behaviour • Memory loss • Difficulty with talking, reading or writing • Difficulty understanding what is said to you • Weakness or numbness in part of the body • Sight problems or loss of vision on one side • Poor balance or coordination • Loss of bladder or bowel control • Dizziness from CancerHelpUK website

10. Memory Problems • Learning and remembering recently acquired information • Distant memory (ie events before tumour) • Less likely to be affected • Specific sorts of memory function • Visual or Verbal • Episodic (ie events) Vs Procedural (how to..) • Things past or future

11. Memory • Input attention/concentration working memory • Storage ie Retention • Output ie Retrieval immediate and delayed recognition free recall cues/prompts

12. Memory Management • If you are not retaining information inside your head, you will need to store it outside • Diary/organiser • Calendar • Note book • ‘To do’ lists • ‘Post its’ • Electronic organiser • Mobile phone • Establish structure and routines

13. Memory Aids • Diaries: • Put in all you need to remember • Take it wherever you might need it • Do not lose it! • Refer to it as often as you need • Calendars/ white-boards /pin boards • Locate in one place for reference

14. Dysexecutive Functioning • Cognitive problems in: • Attention • Understanding complex matters • Problem solving, reasoning, planning, organisation, • Thinking flexibly or multi-tasking • Time awareness • Ability to initiate actions • Ability to monitor one’s own behaviour & adjust it accordingly

15. Dysexecutive Functioning • Behaviour, Emotions, Personality • Lack of insight, awareness of own emotional responses &/or those of others, unaware of consequences of own actions • Flattened affect, passivity • Rigid or concrete thinking • Impulsive behaviour; lack of control of emotions eg aggression/confrontational • Disinhibition; eg sexually inappropriate • Getting stuck on thoughts, words or actions

16. Management • Structure and Routines • Organisational and Planning Aids • Timetable • Activity Schedules • But, we have a problem • People with executive problems may struggle to use these self-management strategies!

17. The Neuropsychologist / Clinical Psychologist • Can assess the problem • With your help (‘patient’ and family) • Observation • Scan reports • Neuropsychological (cognitive) tests • Before / during/ after surgery / follow-up • Help you make sense of it • Help make and implement a management plan • ‘Cognitive rehabilitation’ • At different stages of the journey • Hospital, discharge home, return to work…

18. Indirect Effects of the Illness • Coping with the crisis • Symptoms • Diagnosis • Treatment decisions • Surgery • Intensive care • Recovery (but how much?) • Prognosis • Uncertainty and Unknowns

19. Indirect Effects of the Illness - 2 • Recovery • Rehabilitation in hospital • Return home • Continued rehabilitation • Will she/he be safe? • Able to look after the children? • Return to education or work…

20. Managing Mood: Direct/Indirect • Anxiety • Depression • Low mood • ‘depressing’ • Clinical depression • Emotionality • Emotional lability • Loss of motivation/initiative • Dealing with loss: abilities/role/life

21. ‘Adjustment to Illness’ • Includes • Acknowledging negative emotions but not being overwhelmed by them • Maintaining a reasonable quality of life within the face of illness • Being able to live in the moment • Being open and flexible • Being realistic

22. Looking Back or Forwards? • Dealing with Loss and Grief • Needing to move forward • Traps • Not letting go of the past • Being preoccupied with the future • Focussing on dying rather than living

23. Other problems • Pain • Sleep Problems • Too much, too little, disturbed… • Fatigue/loss of stamina • Physical, mental and emotional activity • Appetite • These illustrate the interconnection between the mind and body

24. Vicious Circles Effort Fatigue Reduced function

25. Anxiety Cycle (adapted from Miller 1981) Stressful Situation/ Stressful Thoughts produces increases leads to triggers Bodily Arousal Ineffectual Coping eg. avoidance Interpretation of Feelings as ‘Anxiety’ Negative Thoughts

26. EmotionsInvolve 3 experiences • What we feel - physiological • What we think - cognitive • What we do - behavioural

28. Managing Low Mood • Structure • Routines • Activity • Exercise • Counselling/psychotherapy • Incl cognitive and behavioural therapies • Medication

29. Accessing Support • GP • Your hospital teams • Adult Services (Social Services) • Carer Support groups • Princess Royal Trust for Carers • www.carers.org/ • Includes help for young carers • Self Help • Books • Websites • Brain tumour specific; eg our host organisations! • Psychological support; eg some online programmes for managing general anxiety and depression

30. Accessing Psychological Support • Counsellors • Wessex Cancer Trust • www.wessexcancer.org/folders/homepage/ • British Association for Counsellors and Psychotherapists • www.bacp.co.uk • Cognitive Behavioural Therapy (CBT) • BABCP (British Association for Cognitive and Behavioural Psychotherapy) • www.babcp.org.uk • British Psychological Society • www.bps.org.uk