managing the psychological effects of living with a brain tumour
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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 - PowerPoint PPT PresentationTRANSCRIPT
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