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what is neuropsychology?
neuropsychology examines how brain changes affect emotion, behaviour and cognition
it also involves helping people adjust to neurological changes and supporting families/carers.
who do neuropsychologists work with?
people with an acquired brain injury (trauma, stroke, tumour/post-surgical injury)
people with a degenerative neurological condition (dementia - alzheimer’s, frontotemporal etc, neurodegenerative - multiple sclerosis, Huntington’s, Parkinson’s, MND)
people with a ‘functional neurological disorder’
the families, ‘carers’ and organisations supporting the person with a neurological condition/symptom
what 3 types of change can cause distress?
biological/physical
social
psychological (depression, aggression, apathy, hallucinations etc)
what are some additional stressors?
aspects of heritability, family, conflict and care responsibilities and intergenerational trauma
what are some possible biology changes?
physical changes in the brain - damage to the emotional centres (limbic system, amygdala)
hormone imbalances (damage to the hypothalamus and pituitary gland)
pain (sensory disruption/physical)
changes in mobility
changes to awareness (seizures)
reduced energy/increased fatigue/sleepiness
what are some possible social changes?
losing/changing roles and responsibilities (work, family roles)
financial implications
lessened ability to understand and cope w/ social interactions (can make a person want to avoid others)
others might not understand how it feels - reactions can make things feel more difficult
what are some possible psychological changes?
shock - potential sudden change in self - identity, expectations, personal narrative
frustration, anger & denial - feelings of injustice, “i don’t deserve this’
low mood/depression, hopelessness - realising loss, changes in abilities, lifestyle, roles and relationships, self-image, hopes for the future
anxiety - noticing changes in thinking skills, personality, how others are reacting to us
low motivation - ‘there’s no point’ etc
what is MS?
multiple sclerosis
neurological condition with no (current) cure which has progressive (sometimes relapsing-remitting) effects on mobility, cognition and emotions over time.
what did Maniscalco 2019’s study show?
small-scale study (36 pp’s newly diagnosed with MS)
found evidence partially corroborating the Kübler-Ross model (outlines five emotional stages that people experience when facing grief, loss, or major life changes: denial, anger, bargaining, depression, and acceptance)
first 6 months - high anxiety, decreasing towards the end of the first year
from the end of the first year - depressive symptoms began to increase, peaking at the 20th month
authors optimistically claim this supports the model
how can therapy help?
by working through loss and changes in function and eventually moving towards adjustment and adaptation
what is an example of a transdiagnostic approach?
acceptance and commitment therapy
transdiagnostic approaches are important for understanding what someone is experiencing and finding the right way to offer support
what did Coates et al 2016 etc find?
older adults experience increasing cog. deterioration after age 50
12.3 million people (19%) in the UK aged 65+, rising to 25% by 2050 —> these changes in cognition affect wellbeing, work, and daily living for a huge population
what difficulties can we start to notice when we start ageing?
memory- worsened ability to memorise + retrieve info, including remembering info about people, appt’s and daily tasks (taking meds)
attention - difficulty concentrating on important info, filtering out distractions + multitasking - all of which affects daily tasks and work performance
speed of processing - becoming slower to understand info, complete tasks/participate in convo’s - can affect safety (driving), work and self-image
executive functioning - struggling w/ complex cog. abilities (problem solving, planning and responding flexibly to changing situations) - these changes can cause widespread difficulties w/ home management, relationships and working life
how is shame and stigma perceived in cognitive ageing?
people w/ visible physical signs of ageing and illness experience distress linked to shame and perceived stigma
pp’s in informal pp engagement groups report embarrassment at symptoms like forgetfulness/noticing that others treat them as less capable
consonant w/ findings that people w/ dementia:
experience shame
avoid potentially embarrassing situations
view themselves negatively
lose faith in their abilities due to their cognitive symptoms
these worries may parallel those expressed by people w/ dementia
who also often express concern about stigma from others
24% fear stigma
40% feel excluded from society
mental health symptom prevalence in older adults reaches 32-37%
current approaches to older adult mental wellbeing are inadequate, and new models are urgently required
research currently under way in this department to explore these issues further
what is FND
functional neurological disorder (refers to a neurological condition caused by changes in how brain networks work, rather than changes in the structure of the brain itself, as seen in many other neurological disorders)
what are symptoms of FND?
physical difficulties such as weakness, paralysis, tremors/spasms in your muscles (can interfere with walking, driving, eating/chewing)
numbness, tingling/pain or other sensory disruptions
seizures, black out/faint
no obvious physical cause -people often get this diagnosis when other options have been exhausted (diagnosis of exclusion)
huge impact on self-image + relationships w/ healthcare professionals
what are possible contributing factors to FND?
previous experience of trauma
emotional regulation difficulties
expression of psychological distress as physical symptoms
low mood/anxiety
stressful life events
experiencing epilepsy/having a family member w/ epilepsy
what is the stigma around FND?
can affect diagnosis, treatment and research
symptoms can be misunderstood, invalidated or dismissed
surveys document frustration experienced by providers and distressing healthcare interactions experienced by people w/ these difficulties
what did MacDuffie et al 2020 say about FND stigma?
the prevalence and context of FND stigma
impact on people w/ FND and healthcare providers
developing ways to reduce to stigma among healthcare professions and the wider society
what is Huntington’s disease (HD)
rare, life limiting neurological disease (10 in 100,000)
cause by a CAG expansion on the HTT gene
dominant gene - inherited from an affected parent
mutant ‘huntingTIN’ causes symptoms
wide range of people w/ HD may have a range of mental health difficulties
communication can get in the way (physical, cognitive issues, personality)
people w/ HD report fewer symptoms than their carers do about them, and overestimate their abilities - Simpson et al, 2016
when do motor symptoms start in HD?
around 30-50 years old
includes ‘chorea’, ‘rigidity’, ‘bradykinesia’ which are used diagnostically
effects on independence, for the affected person and those around them
when do cognitive, behavioural and emotional symptoms start in HD?
cognitive, behavioural and emotional changes predate physical changes by at least 15 years
what are specific changes in cognitive changes in HD?
memory
orientation
speed of processing
executive function
inhibition - putting the brakes on
cognitive flexibility - switching tack
working memory and loss of multitasking
ANOSOGNOSIA - loss of insight (implications for safety and healthcare)
what did Gunn, Maltby and Dale (2020) find in HD?
evaluated differences in psychological symptoms reporting w/ and without an informant present
4 groups
‘manifest’ - after onset of motor symptoms
‘premanifest’ - HD after 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
APATHY - having a close-other present to provide extra info pushed scores, compared to self-rated scores by a person w/ HD alone
so people w/ HD may underestimate their apathy levels, but someone who knows them well can adjust that score up - APATHY IS VISIBLE (a person becomes less responsive, less active and an observer can see this, especially one who knows them well)
AFFECT (anxiety, low mood, suicidal thoughts) it made no difference if the person w/ HD came alone, or w/ an informant
2 possible reasons:
differences in insight between domains
affect is less observable than apathy
MANIFEST - scores were higher not just for manifest HD group but also for premanifest/genotype negative groups when an informant was present (scores adjusted up by the close other in all cases)
fits w/ a relevant past finding (irritability self-ratings diverge most BEFORE cog. changes)
does family and context matter in HD?
HD is entirely genetically determined - if you carry the expanded gene, you will develop HD (assuming you live long enough)
mental health symptoms, while known to be very common in HD compared to populations without a neurological diagnosis are not linked to progression in the same way as cognitive and physical
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 w/ HD
what is the effect of the heritable component of living w/ HD?
children of affected parents have a 50% risk of inheriting the disease themselves
predictive genetic testing is available from 18 years onwards
multiple family members can be affected - high burden on families with intergenerational trauma, grief and loss
what did Maltby et al (2021) find?
used factor analysis to examine what mental health difficulties looked like in those same four 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
FACTOR 1 - ANXIETY
dread
inability to relax
panic
FACTOR 2 - DEPRESSION
not enjoying life
can’t find the fun any more
not looking forward to the future
FACTOR 3 - OUTWARD IRRITABILITY
loss of temper
slamming doors
FACTOR 4 - SELF-HARM
suicidal ideation
self-harming
no difference between groups for anxiety ( a symptom considered characteristic of HD)
for depression and outward irritability, the manifest group ONLY differed from the genotype negative group consistently
only scattered differences from the pre-manifest and family controls
exception was self-harm, where the manifest group differed consistently from all other groups
overall - far less difference than expected
why are there challenges in neuropsychological settings?
clients may not recover, in many cases we and they know they will get worse and eventually die
what support can neuropsychologists offer?
providing therapeutic support to an individual around adjustment, emotional management and managing changes
supporting relatives or others close to the individual, emotionally and/or practically
co-working w/ ‘carers’ and others in the interdisciplinary team to change how they interact w/ a person —→ supporting w/ ‘behavioural management’ and changing staff attitudes to ‘behaviours of concern’ + modelling positive engagement/strategies to help the person cope differently to reduce risk and to enhance quality of life
what is ‘acceptance and commitment’ therapy?
3rd wave intervention, rooted in CBT
grows out of similar understandings about interrelations between thoughts, feelings, physical sensations and behaviour
but focuses less on what is ‘wrong’ in the individual, and more on adjusting to difficult situations, promoting valued living, and enjoyment of life
what are some key points for ACT?
cognitive defusion
ability to take a step back from thoughts, emotions and sensations, to see them as stories told by our minds
stories can be incredibly compelling
don’t have to accept them - sometimes they’re not helpful or accurate, but the important thing is we can CHOOSE
ACT full of metaphors (adapted to work w/ the client) - ‘icecream in a shop’/ ‘toxic parrot’/’drop the rope’
acceptance
ability to make space for distressing thoughts, images, emotions/sensations
accepting that they cannot be rid of - pain is part of life
concept of ‘clean’ + ‘dirty’ pain
present
being in the present moment is a skill we support people to develop through mindfulness practice - focusing the attention on specific stimuli -
breathe
physical self
activity
inner experiences of thoughts, sensations, emotions
notice what’s actually going on rather than spending all of our time worrying about the future/thinking about the past
self as context
learning to see oneself as a container of experiences, not the experiences themselves
we can witness our emotional reactions, our distress, the stories our minds tell us - but remain distinct from them
eg - glass of water (you are the glass not the water)
finding your values
these are your underlying guide to life, helping you to make choices that are right for you
eg - being a hardworker, taking care of people we love, contributing or achieving in some way
values
values are not goals - goals can be completed and ticked off, values remain - helpful for people who’ve experienced a major change in life (sickness/injury)
values can point the way to regaining pleasure and fulfilment
committed action
once we have supported a person to identify their values, they can start finding their ways to change their behaviour and explore new options
they can find new ways to live in line with those values, and lead a richer, fuller, more meaningful life, despite the effects of any neurological condition/difficulties