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
Neuropsychological testing compliments other investigations; eg can pick up problems not yet apparent on scans

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: Calendars/ white-boards /pin boards
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 Fatigue/loss of stamina Appetite
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)
produces
increases leads to
triggers
Stressful Situation/
Stressful Thoughts
Bodily Arousal
Ineffectual Coping
eg. avoidance
Interpretation of
Feelings as ‘Anxiety’
Negative Thoughts

26. Emotions Involve 3 experiences
What we feel physiological
What we think - cognitive
What we do behavioural

27. Purpose of 5 areas model: assessment tool, helps the client and us understand the problems and identifies targets for change. Therefore it’s assessment with a purpose.

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

30. Accessing Support GP Your hospital teams
Adult Services (Social Services)
Carer Support groups
Princess Royal Trust for Carers
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

31. Accessing Psychological Support
Counsellors
Wessex Cancer Trust
British Association for Counsellors and Psychotherapists
Cognitive Behavioural Therapy (CBT)
BABCP (British Association for Cognitive and Behavioural Psychotherapy)
British Psychological Society