Applied Neuropsychology Lecture Notes PDF

APPLIED NEUROPSYCHOLOG Y Dr Sarah Gunn Lecturer in Clinical Psychology Clinical Psychologist (Medical Psychology, LPT) [email protected]  Content label During this session, we will discuss (among other things): Neurological conditions which cau...

APPLIED NEUROPSYCHOLOG Y Dr Sarah Gunn Lecturer in Clinical Psychology Clinical Psychologist (Medical Psychology, LPT) [email protected]  Content label During this session, we will discuss (among other things): Neurological conditions which cause painful and distressing symptoms, and which can be life- limiting Difficulties associated with poor mental wellbeing, which includes references to self- harm and suicidal thoughts If you experience any distress, please feel welcome to step out and/or speak to me afterwards You can also contact the Student Wellbeing Service (phone: 0116 223 1780; email: [email protected]) 22/10/24 Sarah Gunn PS3112  Following this session, you will be able to… Understand the context of neuropsychology (who are we talking about and working with?) Recognise the difficulties associated with neurological conditions and symptoms Learning Describe the impact of neurological issues in: objectives – “Typical” ageing – Functional neurological conditions – Neurodegenerative conditions Explore an example clinical intervention Apply an understanding of systemic contexts to supporting people with neurological presentations 22/10/24 Sarah Gunn PS3112  Plan for today Welcome!  What is neuropsychology, who do neuropsychologists work with, and how? What difficulties may people with neurological difficulties experience? Neuropsychology and… – Typical ageing – Huntington’s disease – Functional neurological conditions This Photo by Unknown Author is licensed under CC BY-ND Examining a clinical intervention in more detail 22/10/24 Sarah Gunn PS3112  Why am I speaking? Teach (mostly) on the clinical doctorate course (DClinPsy), around neuropsychology, ageing, long-term health conditions, and research methods Research neurological conditions, “carer” wellbeing, and impacts of physical and cognitive difficulties on psychological health Work as a clinical psychologist in Medical Psychology and with Neuropsychology in local NHS Trust, mostly with people with neurological difficulties Work with third sector to develop new neurological therapies Have worked in residential and community neurological care and rehabilitation for 11(ish) years 22/10/24 Sarah Gunn PS3112  What is neuropsychology? The study of the brain and how changes to it can affect emotions, behaviour and cognition Supporting people with a neurological diagnosis or symptoms to manage and adjust to changes relating to these difficulties Providing support and guidance to family and close others Working with those who support the individual who is experiencing these changes (emotionally and sometimes practically too) 22/10/24 Sarah Gunn PS3112  Who do neuropsychologists work with? People with an acquired brain injury – Trauma – Stroke – Tumour or 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 or symptom(s) 22/10/24 Sarah Gunn PS3112  Neurological conditions and distress 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 and activities with little or no “visible” ongoing functional or psychosocial change Distress is however understandably common, and may result from: – Biological or physical changes – Social changes – Psychological changes Please be aware that we are not good as a profession at including and supporting people from racially minoritized backgrounds in therapy and research. Our data are systemically biased and problematic (more on this in my second lecture for this module, but see Pugh et al. from the reading list) 22/10/24 Sarah Gunn PS3112  Neurological conditions and distress: From the literature Psychosocial and behavioural difficulties are common following an acquired brain injury, remaining prevalent at least a decade later (Thomsen, 1984) Frequent difficulties include… – Self-isolation - Reduced social awareness – Emotional lability - Reduced empathy – Apathy - Suicide attempts and self-harming behaviour – “Aggressive” behaviour - “Rule-breaking” Some of these are commonest when there are communication difficulties (indicating a role of frustration, with behaviour as an alternative means of communication) Alderman, 2003; Arnould et al., 2015; Fisher et al., 2016; Levin, 1995; Milders et al., 2003; Olver et al., 1996; Prigatano, 1992; Rees et al., 2013; Ryan et al., 2015 22/10/24 Sarah Gunn PS3112  Neurological conditions and distress: From the literature (2) In neurodegenerative conditions, psychological difficulties can include: – Depression - Anxiety – Irritability - Aggression – Apathy - Perseveration – Hallucinations - Apparently paranoid thinking or delusions – Disorientation - Obsessive-compulsive behaviours Even more complex when cognitive symptoms interact with/cause these Additional stressors where there are aspects of heritability, family conflict and care responsibilities, and intergenerational trauma (but we’ll spend more time on this later) e.g. Craufurd et al., 2011, referring to Huntington’s disease 22/10/24 Sarah Gunn PS3112  Possible biological changes Physical changes in the brain – damage to the emotion centres (limbic system, amygdala) Hormone imbalances (damage to the hypothalamus and pituitary gland) Pain (sensory disruption or physical) Changes in mobility Changes to awareness (seizures) Reduced energy and/or increased fatigue or sleepiness 22/10/24 Sarah Gunn PS3112  Possible social changes Losing or changing roles and responsibilities (work, family roles) Financial implications Lessened ability to understand and cope with social interactions – can make a person want to avoid others Others might not understand how it feels – their reactions can make things feel more difficult 22/10/24 Sarah Gunn PS3112  Possible psychological changes Shock: potential sudden change in self-identity, expectations, personal narrative Frustration, anger and denial: feelings of injustice, “I don’t deserve this”, “this can’t be happening to me” Low mood (depression, hopelessness?): realising loss, changes in abilities, lifestyle, roles and relationships, self-image, hopes and plans for the future 22/10/24 Sarah Gunn PS3112  Possible psychological changes (2) Anxiety: noticing changes in thinking skills, personality, how others are reacting to us Low motivation: “there’s no point”, “nothing I can do will change anything”, “it’s all over” You might recognise Kubler-Ross’s five stages of grief over the last two slides… 22/10/24 Sarah Gunn PS3112 22/10/24 Sarah Gunn PS3112  The “change curve” with people with multiple sclerosis Multiple sclerosis (MS) is a neurological condition with no (current) cure, which has progressive (sometimes relapsing-remitting) effects on mobility, cognition and emotions over time Since we cannot cure, we support individuals as much as possible with the process of adjustment (as with many neurological conditions) In a small-scale study (36 participants newly diagnosed with MS), Maniscalco et al. (2019) found evidence partially corroborating the Kubler-Ross model – 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 The authors (slightly optimistically!) claim this supports the model – but seems to be an area meriting further research 22/10/24 Sarah Gunn PS3112  All these difficulties are transdiagnostic… These difficulties are commonly experienced by people living with physical health and neurological conditions Therapy can be helpful with working through loss and changes in function, and (sometimes, eventually) with moves towards adjustment and adaptation While transdiagnostic approaches are increasingly common (e.g., the Acceptance and Commitment Therapy programme we’re going to talk about shortly), some conditions have quite specific experiences and difficulties These are important for understanding what someone is experiencing, and finding the right way to offer support 22/10/24 Sarah Gunn PS3112  “Typical” ageing (Possibly not what you expected to see first?) Older adults experience increasing cognitive deterioration after age 50 With 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. Right: Seattle Ageing Study, showing global decline with limited exceptions (verbal ability; to some extent numerical ability) Coates et al., 2019; Murman, 2015; Schaie, 1996 22/10/24 Sarah Gunn PS3112  As we age, we start to notice difficulties Memory:  Worsened ability to memorise and retrieve information, including remembering information about people, appointments, and daily tasks like taking regular medication.  Attention:  Difficulty concentrating on important information, filtering out distractions, and multitasking – all of which can affect daily tasks and work performance.  Speed of processing:  Becoming slower to understand information, complete tasks, or participate in conversations. This can affect safety (e.g., driving), work, and self-image.  Executive function:  Struggling with complex cognitive abilities such as problem-solving, planning, and responding flexibly to changing situations. These changes can cause widespread difficulties with home management, relationships, and working life. 22/10/24 Sarah Gunn PS3112  How does that experience feel? Study under way to answer this question (data in analysis) We know much more about “objective” changes (psychometric assessments) than the emotional experiences of these changes Can we guess…? 22/10/24 Sarah Gunn PS3112  How does that experience feel? To some extent, an unanswered question We know much more about “objective” changes (psychometric assessments) than the emotional experiences of these changes Can we guess…? – Scary? – Bringing up thoughts about dementia? – Embarrassing? – Shaming? – Triggering bad memories of relatives, or stereotypes seen in the media? 22/10/24 Sarah Gunn PS3112  Shame and stigma in cognitive ageing People with visible physical signs of ageing and illness experience distress linked to felt shame and perceived stigma. So having cognitive difficulties evident to others may cause similar problems Participants in informal participant engagement groups report embarrassment at symptoms like forgetfulness, or noticing that others treat them as less capable This is consonant with findings that people with dementia: – Experience shame – Avoid potentially embarrassing situations – View themselves negatively – Lose faith in their abilities due to their cognitive symptoms Aldridge et al., 2017; Mantzoukas et al., 2021 22/10/24 Sarah Gunn PS3112  Shame and stigma in cognitive ageing These worries may parallel (2) those expressed by people with 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 an estimated 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 Braam et al., 2014; Mitchell et al., 2013; Lee et al., 2021; Rodda et al., 2011; World Health Organization & Alzheimer’s Disease International, 2012 22/10/24 Sarah Gunn PS3112  ”Typical” ageing can be distressing As a clinical psychologisttoo in neuropsychological settings, you often meet people who are worried about their cognition All of them will benefit from feeling validated and respected, with their worries taken seriously – just because someone doesn’t have a “diagnosable” issue, doesn’t make the rest of their concerns go away This can also mean challenging our own expectations and biases about ageing 22/10/24 Sarah Gunn PS3112  “Functional neurological disorder” Synonyms (with thanks to https://rarediseases.org/rare-diseases/fnd/) – Functional neurological symptom disorder – Functional movement disorder – Conversion disorder – Psychogenic seizures / movement disorder – Dissociative seizures / motor disorder – Non-epileptic seizures 22/10/24 Sarah Gunn PS3112  Functional neurological issues The important points, as a person coping with this sort of difficulty: – You might experience physical difficulties, such as weakness, paralysis, tremors or spasms in your muscles, which can interfere with walking, driving, eating or chewing – You might experience numbness, tingling or pain, or other sensory disruption such as visual changes – You might have seizures, black out or faint Crucially, people often get this diagnosis when other options have ben exhausted (a “diagnosis of exclusion”), so there is often no obvious physical cause This can have huge impacts on self-image and relationships with healthcare professionals 22/10/24 Sarah Gunn PS3112  Possible contributing factors 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 Cope et al. (2017) 22/10/24 Sarah Gunn PS3112  From the client’s perspective… You have frightening symptoms which indicate a serious neurological problem, but no one can tell you why You’re given a diagnosis, often after years of being sent from service to service with no progress, and eventually sent to see a psychologist By this point, people are often worrying it’s “all in their head” (and some have even been told exactly that) Therapy is often about building an understanding of the role of stressors, low mood, anxiety and systemic difficulties in wellbeing, and when they may contribute to “functional” difficulties 22/10/24 Sarah Gunn PS3112  Stigma against people with these difficulties Stigma against people with functional neurological difficulties 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 with these difficulties MacDuffie et al. (2020) identified the need to investigate further: – The prevalence and context of FND stigma – Its impact on people with functional neurological difficulties and healthcare providers – Developing ways to reduce stigma among healthcare professionals and wider society 22/10/24 Sarah Gunn PS3112  A break and short mindful exercise 22/10/24 Sarah Gunn PS3112  Huntington ’s disease (HD) Rare, life-limiting neurological disease: about 10 in 100,000 people Caused by a CAG expansion on the HTT gene Dominant gene: inherited from an affected parent (it’s not possible to be a carrier) Mutant huntingtin causes symptoms 22/10/24 Sarah Gunn PS3112  HD onset: Not as clear-cut as you might think Motor symptoms: Start around 30-50 years old Include “chorea”, “rigidity,” “bradykinesia” which are used diagnostically Effects on independence, for the affected person and those around them BUT Cognitive, behavioural and emotional changes predate physical changes by at least 15 years We’ll return to this idea later – but start thinking about the implications for relationships, work, daily life when these difficulties start to affect a person before there’s a visible, physical issue. How might the individual respond? How might others respond? 22/10/24 Sarah Gunn PS3112  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) 22/10/24 Sarah Gunn PS3112  A bit more on insight in HD… People with HD may have a wide range of mental health difficulties Communication can get in the way (physical, cognitive issues, personality!) People with HD report fewer symptoms than their carers do about them, and overestimate their abilities (Simpson et al., 2016) Only reports from an “informant” (someone close to the person with HD) have been shown to have predictive validity about abilities years into the future (Duff et al., 2010) But it gets more interesting… 22/10/24 Sarah Gunn PS3112  Insight in HD (2) Gunn, Maltby and Dale (2020) (this is the part where I cite my own research, sorry!) Key question: Does it make mental wellbeing assessments more accurate, if you have an “informant” (close other) come to appointments with a person with HD? 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 22/10/24 Sarah Gunn PS3112  What we found: Insight is complicated… For assessments of apathy, having a close-other present to provide extra information DID push scores up compared to self-rated scores by a person with HD alone – So people with HD may underestimate their apathy levels, but someone who knows them well can adjust that score up – They can (we theorised) do this because apathy is visible. A person becomes less responsive, less active, and an observer can see this, especially one who knows them well 22/10/24 Sarah Gunn PS3112  What we found (part two) For affect (anxiety, low mood, suicidal thoughts) it made no difference if the person with HD came alone, or with an informant Two possible reasons: 1) Differences in insight between domains? 2) Affect is less observable than apathy? Either way, a worry: are healthcare professionals getting good enough information about affect for people with HD? 22/10/24 Sarah Gunn PS3112  What we found (part 3) Scores were higher not just for manifest HD group, but also for premanifest and genotype negative groups when an informant was present – scores adjusted up by the close other in all cases Fits with a relevant past finding: irritability self-ratings diverge most before cognitive changes (Chatterjee et al., 2005) Social undesirability of “irritability”? We have a study running to investigate this right now, building on our review finding that irritability in HD is poorly-understood (Simpson et al., 2019) 22/10/24 Sarah Gunn PS3112  So we know that cognitive difficulties can have significant impacts for people with HD. But (as we touched on earlier) - HD isn’t just about individuals, it’s about families and systems... Next we’re going to consider how the system around a person can affect experiences of neurological difficulties (HD is a brilliant example of this) 22/10/24 Sarah Gunn PS3112  Family and context in HD: Does it matter? (Spoiler: yes!) This is a crucial point: HD is entirely genetically determined. If you carry the expanded gene, you will develop HD (assuming you live long enough) But 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 issues are… 22/10/24 Sarah Gunn PS3112  A Machine‐Learning Derived Huntington's Disease Progression Model: Insights for Clinical Trial Design Movement Disorders, Volume: 37, Issue: 3, Pages: 553-562, First published: 06 December 2021, DOI: (10.1002/mds.28866) Mohan et al. (2021)  Family and context in HD: Does it matter? (Spoiler: yes!) This is a crucial point: HD is entirely genetically determined. If you carry the expanded gene, you will develop HD (assuming you live long enough) But 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 issues are… To find out the systemic impacts of HD, we can look at HD- affected family systems (rather than just individuals) and see whether everyone is experiencing poorer mental wellbeing, or just the people carrying the HD gene expansion 22/10/24 Sarah Gunn PS3112  So what else may be causing 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 22/10/24 Sarah Gunn PS3112  The 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 Multiple family members can be affected: high burden on families with intergenerational trauma, grief and loss Think about the adjustment journey again, and how that might look with ongoing re-traumatization over time 22/10/24 Sarah Gunn PS3112  One more study of ours (briefly) In Maltby et al. (2021), we 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 We found surprising similarities in the types of difficulties reported… 22/10/24 Sarah Gunn PS3112  Four factors, consistent across groups: Factor 1: Anxiety Factor 3: Outward Dread irritability Inability to relax Loss of temper Panic Slamming doors Factor 2: Depression Not enjoying life Factor 4: Self-harm Suicidal ideation Can’t find the fun any more Self-harming Not looking forward to the future 22/10/24 Sarah Gunn PS3112  OK, but what about severity of symptoms? 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 premanifest and family controls The exception was self-harm, where the manifest group differed consistently from all other groups Overall – far less difference than expected 22/10/24 Sarah Gunn PS3112  Why does this matter? Understanding mental wellbeing for people with HD helps to improve care and open up new therapy options (currently not effective enough) (Zarotti et al., 2022) Provides a level of confidence to mental health professionals not specialising in HD Highlighting psychological needs for HD-affected families can improve support 22/10/24 Sarah Gunn PS3112  Back to neurological conditions in general… As psychologists in neuropsychological settings, we face a challenging situation therapeutically and personally Our clients may not recover; in many cases we and they know they will get worse and eventually die (HD, but many other examples) So in this context – what can we do to help people, since the more traditional “fixing” construct in therapy isn’t available to us? 22/10/24 Sarah Gunn PS3112  What kind of support can we offer? What a neuropsychologist (or clinical psychologist in neuropsychology) does varies a lot (affected by the context and remit of the service where they find themselves): – 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 (adjustment, relationships, coping with ”symptoms”) – Co-working with “carers” and others in the interdisciplinary team to change how they interact with a person, e.g.: Supporting with “behavioural management” and changing staff attitudes to “behaviours of concern” (NOT “challenging behaviours”) Modelling positive engagement or strategies to help the person cope differently, to reduce risk and to enhance quality of life 22/10/24 Sarah Gunn PS3112  “Acceptance and Commitment Therapy” Third wave cognitive behavioural therapy Grows out of similar understandings about interrelations between thoughts, feelings, physical sensations, and behaviour But focuses less on what is “wrong” (or to be fixed) in the individual, and more on adjusting to difficult situations, promoting valued living, and enjoyment of life These are really important for neurological conditions where fixing isn’t possible, and acceptance of tough realities can be crucial Over 700 randomized controlled trials of ACT efficacy, including specific trials in neurological conditions such as acquired brain injury 22/10/24 Sarah Gunn PS3112 The CBT “hot cross bun” Thoughts Behaviour( Bodily s) sensations Feelings  The ACT “hexaflex ” Copyright Steven C. Hayes; used by permission https://contextualscience.org/using_the_hexaflex_in_publications_copyright 22/10/24 Sarah Gunn PS3112  ACT – key points for therapeutic Defusion: work – The ability to take a step back from thoughts, emotions and sensations; to see them as stories told by our minds – These stories can be incredibly compelling – We don’t have to accept them– sometimes they’re not helpful or accurate, but the important thing is we can choose – ACT is full of metaphors (adapted to work with the client) – typical ones include: Clouds across the sky Ice cream in a shop The toxic parrot 22/10/24 Sarah Gunn PS3112  Why we shouldn’t blindly follow! 22/10/24 Sarah Gunn PS3112  One of the most well- known metaphors , useful for defusion… Link to the Passe ngers on the Bus video 22/10/24 Sarah Gunn PS3112  ACT – key points for therapeutic work Acceptance is the ability to make space for distressing thoughts, images, emotions, sensations Accepting that they cannot be got rid of: pain is part of life Concept of “clean” and ”dirty” pain (or suffering) We can learn to make space for the unavoidable difficult experiences, in order to live a “valued” life 22/10/24 Sarah Gunn PS3112  But we have the choice to drop the Yep, another rope metaphor But they’re a great way to engage clients without being too technical! The Monster and the Tug of War 22/10/24 Sarah Gunn PS3112  The hope is you learn to stop battling the monster, and instead focus on what you enjoy – without using all your strength and emotional energy on an endless (unwinnable) battle 22/10/24 Sarah Gunn PS3112  ACT – key points for therapeutic work Being in the present moment is a skill we support people to develop through mindfulness practice – focusing the attention on specific stimuli like: – The breath – The physical self – An activity (can be as banal as washing up!) – The inner experience of thoughts, sensations, emotions Noticing what is actually going on, rather than (as we tend to do, especially when stressed or unhappy) spending all of our time worrying about the future, or thinking about the past 22/10/24 Sarah Gunn PS3112  ACT – key points for therapeutic Self as context: work – 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 – Example of a glass of water: you are the glass, not the water 22/10/24 Sarah Gunn PS3112  ACT – key points for therapeutic Finding your values: work – These are your underlying guide to life, helping you to make choices that are right for you – think of them like points on a compass, showing you the way to go – Examples might be: Being a hard worker Taking care of people we love Contributing or achieving in some way – What are three of your values…? 22/10/24 Sarah Gunn PS3112  Honest Caring Compassion Brave Fair Just Independence Adventurous Clever Organised Loving Open Humble Hard-working Family-oriented Curious Positive Strong Accepting Flexible Supportive Reliable Useful Genuine Humour Trustworthy Tolerant Leader Creative Fun Exciting Friendly Persevering Joyful Growing Aware Assertive Fighter Cooperative Teaching Helpful Respectful Calm Dominant Freedom Service Honour Pleasure Pride Trusting Faith Dependable Tough Bold Gentle Social 22/10/24 Sarah Gunn PS3112  What were your three values? Where do you sit on this line, for each one… and why? 1 2 3 4 5 6 7 8 9 10 Not aligned at all Totally aligned Is this something you’d like to change? 22/10/24 Sarah Gunn PS3112  ACT – key points for therapeutic work Values are not goals – goals can be completed and ticked off, values remain This is especially helpful for people who have experienced a major change in life (e.g., due to sickness or injury) Real examples: – A person may miss climbing, but they now need a wheelchair and cannot physically do it. But what they valued was (and still is) the sense of adventure and pushing themselves – Another person may miss running marathons, but their value was (is) tenacity and gaining money for charities So values can point the way to regaining pleasure and fulfilment 22/10/24 Sarah Gunn PS3112  ACT – key points for therapeutic Committed action: work – Once you have supported a person to identify their values, they can start finding ways to change their behaviour and explore new options (back to the adjustment journey again!) – They can then 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 or difficulties 22/10/24 Sarah Gunn PS3112  Any questions? Dr Sarah Gunn [email protected] Reminder of Student Wellbeing Service details: 0116 223 1780 [email protected]  References (interesting info mentioned in the lecture, but only to be read Aldridge H,if you Fisher want P & Laidlaw to) K. Experiences Analysis. Dementia, 2017:18(5), 1896-911 of shame for people with dementia: An Interpretative Phenomenological Arnould A, Rochat L, Azouvi P, Van der Linden M. Apathetic symptom presentations in patients with severe traumatic brain injury: Assessment, heterogeneity and relationships with psychosocial functioning and caregivers’ burden. Brain Inj. 2015;29(13–14):1597–603. https://doi.org/10.3109/02699052.2015.1075156 Braam AW, Copeland JRM, Delespaul PAEG et al. Depression, subthreshold depression and comorbid anxiety symptoms in older Europeans: Results from the EURODEP concerted action. Journal of Affective Disorders, 2014:155, 266-72 Chatterjee A, Anderson KE, Moskowitz CB, et al: A comparison of self-report and caregiver assessment of depression, apathy, and irritability in Huntington’s disease. J Neuropsychiatry Clin Neurosci 2005; 17, 378–383 Coates S, Tanna P, Scott-Allen E. Overview of the UK Population: August 2019; Office for National Statistics: Newport, UK Craufurd D, Thompson JC, Snowden JS: Behavioral changes in Huntington disease. Neuropsychiatry Neuropsychol Behav Neurol 2001; 14, 219–226 Duff K, Paulsen JS, Beglinger LJ, et al: “Frontal” behaviors before the diagnosis of Huntington’s disease and their relationship to markers of disease progression: evidence of early lack of awareness. J Neuropsychiatry Clin Neurosci 2010; 22, 196–207 Fisher LB, Pedrelli P, Iverson GL, Bergquist TF, Bombardier CH, Hammond FM, et al. Prevalence of suicidal behaviour following traumatic brain injury: Longitudinal follow-up data from the NIDRR Traumatic Brain Injury Model Systems. Brain Inj. 2016;30(11):1311–8 22/10/24 Sarah Gunn PS3112  More references! (interesting info mentioned in the lecture, but only to be read informantif you presence makewant a difference? Jto) Gunn S, Maltby J, Dale M: Assessing mental health difficulties among people with Huntington’s disease: Does Neuropsychiatry Clin Neurosci 2020 32, 244–251 Lee C, Kuhn I, McGrath M et al. A systematic scoping review of community-based interventions for the prevention of mental ill-health and the promotion of mental health in older adults in the UK. Health and Social Care, 2021:30(1), 27-57 Levin HS. Neurobehavioral outcome of closed head injury: Implications for clinical trials. J Neurotrauma. 1995;12(4):601–10. https://doi.org/10.1089/neu.1995.12.601 MacDuffie KE, Grubbs L, Best T, et al. Stigma and functional neurological disorder: a research agenda targeting the clinical encounter. CNS Spectrums 2020:26(6). Maltby J, Ovaska-Stafford N, Gunn S. The structure of mental health symptoms in Huntington’s disease: Comparisons with healthy populations. J Clin Exp Neuropsychol 2021; 43:7, 737-752 Mantzoukas S, Kotrotsiou S, Mentis M et al. Exploring the impact of shame on health-related quality of life in older individuals. Journal of Nursing Scholarship, 2021:53(4), 439-48 Milders M, Fuchs S, Crawford JR. Neuropsychological impairments and changes in emotional and social behaviour following severe traumatic brain injury. J Clin Exp Neuropsychol. 2003;25(2):157–72. https://doi.org/10.1076/jcen.25.2.157.13642 Mitchell G, McCollum P, & Monaghan C. The personal impact of disclosure of a dementia diagnosis: a thematic review of the literature. British Journal of Neuroscience Nursing, 2013:9(5), 223-33 Mohan A, Sun Z, Ghosh S: A machine-learning derived Huntington’s disease progression model: Insights for clinical trial design. Mov Disord 2021 37, 553-562 Murman DL. The impact of age on cognition. Seminars in Hearing, 2015:36(3), 111-21 Olver JH, Ponsford JL, Curran CA. Outcome following traumatic brain injury: A comparison between 2 and 5 years after injury. Brain Inj. 1996;10(11):841–8. https://doi.org/10.1080/026990596123945 22/10/24 Sarah Gunn PS3112  Even more references! (interesting info mentioned in the lecture, but only to be read if you want to) Pugh E, Robinson A, De Vito AN, et al. Representation of U.S. Black Americans in neuropsychology research: How well do our reporting practices show that Black lives matter? The Clinical Neuropsychologist, 36(2), 214-226 Prigatano GP. Personality disturbances associated with traumatic brain injury. J Consult Clin Psychol. 1992;60(3):360–8. https://doi.org/10.1037//0022-006x.60.3.360 Rees L, Weiser M, Aubut J, Teasell R, Leclerc C, van Reekum R, et al. Mental health issues post ABI: 8.4 Challenging behaviours. London, ON: Western University; 2013. Rodda J, Walker Z & Carter J. Depression in older adults. BMJ, 2011:343, d5219 Schaie KW. Intellectual Development in Adulthood: The Seattle Longitudinal Study, Cambridge University Press, Cambridge, 1996 – reproduced in Hedden, T and Gabrieli, JDE, Insights into the Ageing Mind: a view from cognitive neuroscience, Nature Reviews Neuroscience, 2004, 5:87-96 Simpson J, Dale M, Theed R, Gunn S, Zarotti N, Eccles F. Validity of irritability in Huntington's disease: A scoping review. Cortex 2019; 120, 353-74 Simpson JA, Lovecky D, Kogan J, et al: Survey of the Huntington’s disease patient and caregiver community reveals most impactful symptoms and treatment needs. J Huntingtons Dis 2016; 5, 395–403 Thomsen IV. Late outcome of very severe blunt head trauma: A 10-15 year second follow-up. J Neurol Neurosurg Psychiatry. 1984;47(3):260–8. https://psycnet.apa.org/doi/10.1136/jnnp.47.3.260 World Health Organization & Alzheimer’s Disease International (2012). Dementia: A public health priority. https://tinyurl.com/5n6va8ts Zarotti N, Dale M, Eccles F, Simpson J: More than just a brain disorder: A five-point manifesto for psychological care for people with Huntington’s disease. J Pers Med; 2022:12(1), 64 22/10/24 Sarah Gunn PS3112