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What is neuropsychology
The study of the brain and how changes can affect emotions, behaviour and cognition
Who do neuropsychologists work with
People with an acquired brain injury eg trauma, stroke and tumour
People with a degenerative neurological condition eg dementia (Alzheimer) neurodegenerative (multiple sclerosis, hungtingtons, parkinsons)
People with a functional neurological disorder
The families, carers or organisations supporting the person with a neurological condition or symptoms
Neurological conditions and distress
There is a wide range of neurological conditions, but some shared or common difficulties
Severity can vary wildly from a ‘prolonged disorder of consciousness’ to a return to (or maintenance of) previous work
Activities with little or no ‘visible’ ongoing functional or psychosocial change
Distress is common and may result from biological/physical/social and psychological changes
Literature supporting neurological conditions and distress
Pyschosocial and behavioural difficulties are common following an acquired brain injury, remaining prevalent at least a decade later (Thomsen, 1984)
Frequent difficulties include self isolation, emotional lability, apathy, aggressive behaviour, reduced social awareness and reduced empathy
Some of these are common when there are communication difficulties (indicating a role of frustation) (Alderman et al 2003)
Neurodegenerative conditions become even more complex when cognitive systems interact with/cause these
Difficulties from these conditions include depression, anxiety and aggression
Craufurd et al 2011, referring to huntingtons disease
Possible biological changes as a result of neurological disease
Physical changes in the brain, damage to the emotion centres, amygdala
Hormone imbalances, damage to the hypothalamus and pituitary gland
Pain, sensory disruption and nerve damage
Changes in mobility
Changes to awareness, seizures
Reduced energy and/or increased fatigue or sleepiness
Possible social changes as a result of neurological disease
Losing or changing roles and responsibilities, eg work and family roles
Financial implications
Lessened ability to understand and cope with social interaction, can make a person want to avoid others
Others might not understand how it feels, their reaction can make things feel more difficult
Possible psychological changes
Shock, potential sudden change in self identity, expectations and personal narrative
Frustation, anger and denial, feelings of injustice, ‘i dont deserve this’, this cant be happening to me
Low mood, depression, realising loss, changes in abilities, lifestyle and roles and relationships
Anxiety, noticing changes in thinking skills, personality and how others are reacting to us
Low motivation, ‘there’s no point’ ‘nothing i do will change anything’ ‘its all over’
What is the ‘change curve’ with people with multiple sclerosis
Since MS does not have a current cure, individuals are supported as much as possible with the process of adjustment
In a small scale study, 36 participants newly diagnosed with MS found evidence corroborating with the Kubler ross 5 stages of grief model (Maniscalo et al, 2019)
First 6 months of diagnosis, high anxiety decreasing towards the end of the first year
From end of first year, depressive symptoms began to increase, peaking at the 20th month
What is a transdiagnostic approach
Focuses on common psychological processes across multiple disorders rather than treating each diagnosis separately
How are these difficulties transdiagnostic
Difficulties typically experienced by people with physical health and neurological conditions
Therapy can be helpful working through loss and changes in function
Transdiagnostic approaches are common eg ACT but conditions have quite specific experiences and difficulties
‘Typical’ ageing
Older adults experience increasing cognitive deterioration after age 50
Changes in cognition affect wellbeing, work and daily living
Numerical ability as well as verbal ability and memory deteriorate as we age
Difficulties in ageing
Memory, worsened ability to memorise and retrieve information, including remembering info about people, appointments and daily tasks
Attention, difficulty concentrating on important information, filtering out distractions and multitasking, all affect daily tasks
Speed of processing, becoming slower to understand information, complete tasks or participate in conversations, affects safety while driving and working
Executive function, struggling with complex cognitive abilities such as problem solving, planning and responding flexibly to changing situations. Can cause difficulties with home management and relationships
Shame and stigma in cognitive ageing
People with visible physical signs of ageing and illness experience distress linked to shame and perceived stigma
Having cognitive difficulties evident to others may cause similar problems
Participants in informal participant engagement groups report embarrassment at symptoms like forgetfulness
This is consistent with findings that people with dementia experience shame and avoid potentially embarrassing situations
Mental health symptom prevalence in older adults reaches an estimated 32-37%
Current approaches to older adult mental wellbeing are inadequate and new models are required
Functional neurological issues
Physical difficulties eg weakness, paralysis, tremors or spasms which can interfere with walking, driving and daily activities
Numbness or tingling of pain
Seizures, blackout, fainting
People often get this diagnosis when other options have been exhausted, there is sometimes no obvious physical cause so clinicians diagnose as ‘functional neurological disease’
Has huge impacts on self image and relationships with healthcare professionals
Possible contributing factors to neurological disease (Cope et al, 2017)
Previous experience of trauma
Emotion regulation difficulties
Expression of psychological distress as physical symptoms
Low mood or anxiety
Stressful life events
Experiencing epilepsy or having a family member with epilepsy
Stigma around people with neurological difficulties
Stigma can affect diagnosis, treatments and research
Symptoms can be misunderstood, invalidated or dismissed
Surveys document frustration experienced by providers and distressing healthcare interactions experienced by people with these difficulties
The need to investigate further, was necessary, prevalence and context of stigma and it’s impact on people with functional neurological difficulties and healthcare providers (MacDuffie et al, 2020)
What is huntingtons disease
Life limiting neurological disease about 100 in 100,000 people
Caused by a CAG expansion on the HTT gene
Dominant gene, inherited from an affected parent, its not possible to be a carrier
Mutant hungingtin causes symptoms
People with HD may have a wide range of mental health difficulties and communication may get in the way
People with HD report fewer symptoms than their carers do about and overestimate their abilities (Simpson et al, 2016)
HD onset
Motor symptoms, start around 30-50 years old
Include ‘chorea’ a movement disorder, rigidity and bradykinesia slowness of movement, these are used diagnostically
Effects on Independence for the affected person and those around them
However cognitive, behavioural and emotional changes predate physical changes by at least 15 years
Cognitive changes in HD
Memory
Orientation
Speed of processing
Executive function, inhibition, putting the brakes on, cognitive flexibility, switching tack, working memory and loss, multitasking
Family and context in HD
HD is entirely genetically determined but if the gene continues then it is possible to develop HD
However mental health symptoms are very common in HD compared to other populations without a neurological diagnosis
What else can cause distress in HD
Changes in narratives and expectations
Grief and loss
Worries for relatives
Financial stressors
Affects relatives without HD as much as people with HD
Heritable component of living with HD
Children of affected parents have a 50% risk of inheriting the disease themselves
Predictive genetic testing is available from 18 years onwards although the vast majority dont undertake it
Multiple family members can be affected, high burden on families with inter generational trauma, grief and loss
Mental health difficulties (Maltby et al 2021)
Factor anaylsis was used to examine mental health difficulties in 4 groups
Manifest, HD after onset of motor symptoms
Premanifest, HD before onset of motor symptoms
Genotype negative, people once at risk but have tested negative
Family controls, from HD affected families but have never been at genetic risk
Findings of mental health difficulties (Maltby et al 2021)
Four factors that were consistent across groups
Anxiety, dread and inability to relax
Depression, not enjoying life and not looking forward to the future
Outward irritability, loss of temper
Self harm, suicidal ideation
There was no difference of the severity of symptoms between groups for anxiety
For depression and outward irritability, the manifest group only differed from the genotype negative group consistently.
Only scattered differences of severity of symptoms from the premanifest and family controls
The exception was self harm, where the manifest group differed consistently from all other groups
What support does a neuropsychologist offer
Provides therapeutic support to an individual around adjustment, emotional management and managing changes
Supporting relatives or others close to the individual, emotionally and/or practically (adjustment, relationships and coping with symptoms)
Co working with carers and others in the interdisciplinary team to change how they interact with a person eg supporting with behavioural management
Modelling positive engagement or strategies to help the person cope differently to reduce risk and to enhance quality of life
What is acceptance and commitment therapy
Grows out of similiar understandings about interrelations between thoughts, feelings, physical sensations and behaviour
Focuses less on what is ‘wrong’ in the individual and more on adjusting to difficult situations and promoting valued living and enjoyment of life
Over 700 randomized controlled trials of ACT efficacy, including specific trials in neurological conditions such as acquired brain injury
Cognitive defusion in ACT hexaflex
The ability to step back from thoughts, emotions and sensations, to see them as stories told by our minds
Stories can be compelling but we don’t have to accept them
Sometimes they are not helpful or accurate but it is important that we can choose
Acceptance in ACT hexaflex
The ability to make space for distressing thoughts, images, emotions and sensations
Accepting that they cannot be rid of, pain is part of life
Concept of ‘clean’ and ‘dirty’ pain
Key points for therapeutic work in ACT
Focusing on specific stimuli such as the breath, the physical self and the inner experience of thoughts, sensations and emotions
Noticing what is going on rather than spending all of our time worrying about the future
Remembering that values are not goals, values remain whereas goals can be completed or ticked off
This is helpful for people who have experienced a major change in life
Insight into HD study (Gunn, Maltby and Dale, 2020)
Evaluated differences in psychological symptom reporting with and
without an informant present
Four groups (n = 7914):
Manifest HD – after onset of motor symptoms
Premanifest HD – before onset of motor symptoms
Genotype negative” people – once at risk, but have tested negative
Family controls – from HD-affected families, but have never been at genetic risk
Insight into HD findings (Gunn, Maltby and Dale, 2020)
Individuals with HD may underestimate their apathy levels, having an informant present to provide extra information did push scores up compared to self rated scores
For affect (anxiety, low mood and suicidal thoughts) it made no difference if the person with HD came alone or with an informant
Scores were higher for manifest, premanifest and genotype negative groups when an informant was present
Fits with a relevant past finding: irritability self-ratings diverge most before cognitive changes (Chatterjee et al., 2005)
What is the CBT ‘hot cross bun’
Thoughts
Behaviours,
Feelings,
Bodily sensations
The hot cross bun model illustrates the relationship between these factors
Helps individuals to develop self awareness by showing how these elements influence one another
What is the ACT hexaflex
6 core processes of ACT which focus on one core concept of psychological flexibility
Psychological flexibility is the ability to adapt to challenging situations while staying true to their value
Following core processes:
Acceptance
Defusion
Committed action
Self as context
Contact with the present moment
Values
Self as context in ACT hexaflex
Learning to see oneself as a container of experiences and not the experience themselves
We can witness emotional reactions and our distress and remain distinct from them
Finding values in ACT hexaflex
Underlying guide to life, helping us to make choices that are right
eg being a hard worker or taking care of people we love
Committed action in ACT hexaflex
Once an individual has identified their values, they can start finding ways to change their behaviour
Finding ways to explore new options
Finding ways to live in line with those values and lead a richer, fuller meaningful life