Managing the Psychological Effects of Living with a Brain

Tumour

Nick Black

Consultant Clinical Psychologist

Winchester and Eastleigh Healthcare Trust

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

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?

Journey in Family Context

• Partner

• Parents

• Children

• Brothers and sisters…..

• Health professionals, social services, independent sector, church….

Who Provides Psychological Support?

• Starts at home

• All health/ social care professionals…

• 4 tiers of Psychological Carei. All trained staff

ii. Senior clinicians with additional training and experience

iii. Counsellors

iv. Specialists eg clinical psychologists/ psychotherapists/ psychiatrists

Psychological Support

A Dream?

Reality?

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

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

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

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

Memory• Input attention/concentration

working memory

• Storage ie Retention

• Output ie Retrievalimmediate and delayed

recognition free recall

cues/prompts

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

Memory Aids

• Diaries:1. Put in all you need to remember2. Take it wherever you might need it3. Do not lose it! 4. Refer to it as often as you need

• Calendars/ white-boards /pin boards– Locate in one place for reference

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

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

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!

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…

Indirect Effects of the Illness

• Coping with the crisis– Symptoms– Diagnosis– Treatment decisions– Surgery– Intensive care– Recovery (but how much?)– Prognosis – Uncertainty and Unknowns

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…

Managing Mood: Direct/Indirect

• Anxiety• Depression

– Low mood– ‘depressing’– Clinical depression

• Emotionality• Emotional lability• Loss of motivation/initiative• Dealing with loss: abilities/role/life

‘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

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

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

Vicious Circles

Effort Fatigue

Reduced function

Anxiety Cycle (adapted from Miller 1981)

produces

increases leads to

triggers

Stressful Situation/Stressful Thoughts

Bodily Arousal

Interpretation of Feelings as ‘Anxiety’

Negative Thoughts

Ineffectual Copingeg. avoidance

Emotions Involve 3 experiences

• What we feel - physiological

• What we think - cognitive

• What we do - behavioural

Managing Low Mood

• Structure• Routines• Activity• Exercise• Counselling/psychotherapy

– Incl cognitive and behavioural therapies

• Medication

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

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