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Psychological Therapies for
Depression and Anxiety
in Dementia
Dementias 2017
The Royal College of General Practitioners
London 9/10 February 2017
Reinhard Guss, Consultant Clinical Psychologist, Clinical Neuropsychologist
Chair of Faculty for the Psychology of Older People
Why therapy in dementia?
 Most feared condition in over 50s
 Existential threat to self
 Uncertainty of progression
 Activation of life long vulnerabilities
 Day-to-day chronic stress and “failures”
 Undermining of lifelong coping styles
 Improving functioning through increased well being
 Improving cognitive functioning (treat excess disability)
 Adjustment to role reversals and relationship changes
 Coping with loss and grief
Excess Disability
 In healthy people anxiety and depression affect cognitive
functioning:
 Executive functioning: processing speed and capacity,
“tunnel vision”, judgement, reasoning, attention, planning
 New learning, delayed memory
 Visual/spatial processing and perception
 Language, word finding, expression, fluency
 A compromised brain is more vulnerable, the effects of
anxiety /depression are heightened and more disabling
 Reducing excess disability can be highly effective in
improving quality of life and functioning.
Predisposing Factors
Stress and Coping
 Lazarus’ Model of Stress and Coping:
 Appraisals of perceived resources vs perceived threats
 Coping skills vs challenges/stressors
 A certain level of “stress” is good for you
 Dementia creates daily hassles and raises stress levels
 Diagnosis is a “life event” adding significant stress
 Resources are mobilised but dementia undermines coping
 A tipping point is reached
 Chronic stress – Anxiety symptoms – Exhaustion - Depression
Predisposing Factors
Vulnerability & Stress
 Vulnerability-Stress Model of the aetiology of
Anxiety/Depression: pre-existing factors increasing likelihood
 Early losses, deprivation, trauma
 Personality, previous reaction of anxiety, depression, ocd
 Relationships
 Extrovert/introvert
 Locus of control beliefs
 Assertiveness, confidence, self doubt
 Assessment of vulnerabilities, towards prevention

What is therapy in dementia work?
 Working with family carers:
 preventing relationship breakdown,
 maintaining mental and physical health,
 avoiding premature admission to care
 Working with care staff in care homes and community:
 Avoiding hospital admission and placement breakdown
 Working with people with a dementia:
 Making the diagnostic process helpful for living well
 Reducing excess disability from depression, anxiety
 Improving cognitive functioning through strategies
Prevalence
 The surprising lack of reliable data
 Early diagnosis of large numbers of people is relatively
recent!
 Depression: 20% - 40% of people with dementia, mostly later
stages, poorly defined samples, worse in care homes, more
than same age without dementia
 Anxiety: 5% - 72% in people with dementia, depending on
definition, very high for anxiety “symptoms” short of
meeting diagnostic criteria.
 OCD, PTSD: no data or prevalence studies?
 Anecdotal evidence from clinical practice, case studies!
Psychological Therapy
is Treatment!
 Knowledge gained in biomedical research – is it
proportionate to expense?
 Since Cholinesterase inhibitors, no successful new drug
treatments developed (yet?)
 Recent increase in funding for “care” research, including
psychological therapies
 Rapid growth in adaptations to existing therapies and
available approaches in clinical practice
 The recent new treatments are psychological therapies:
CST, Lifestory Work, Cognitive Rehabilitation
Lessons from Neuropsychology, ABI and ID:
CST and Cognitive Rehabilitation
 Cognitive Stimulation Therapy
 Manualised programme, group format
 First to be researched to RCT standard
 Ongoing developments
 Current NICE guidance
 Cognitive Rehabilitation
 Based on neuropsychological data
 Individualised goals and strategies
 GREAT trial: providing evidence for NICE, RCT in progress
 Using CR to treat depression in dementia (proposal
submitted)
Cognitive disability and
psychological therapy:
lessons from Neuropsychology, Acquired
Brain Injury and Intellectual Disability
 Therapy works!
 Reductions in distress, increase in functioning,
improvement in excess disability
 Therapy works better with experienced therapists
 Understand nature of cognitive disabilities, are familiar
with the client group, are knowledgeable about the
nature, specific issues and interactions of cognitive
difficulties, their causes and wider societal and relational
effects
Lessons from Neuropsychology and
cognitive dementia assessment
 Alzheimer’s Disease: “I can’t remember any of the facts of what
went on, but I do remember how it made me feel”
 Hippocampus vs Amygdala?
 A typical profile of forgetting
 Vascular Dementia: “ I never know if it will work or not. I just
can’t figure it out. When I sleep on it, it often works out later”
 Unpredictability of blood flow
 Uncertainty of subcortical connections
 Vascular Dementia: “ everything takes me forever to do; I used
to be so keen, now I just cant really be bothered”
 Slowing of processing, anhedonia or Depression?
Lessons from Neuropsychology and
cognitive dementia assessment
 Lewy Body Dementia: “One minute it’s all going swimmingly
and the next all weird stuff is happening and I have to work out
where I am again”
 Sudden disconnections and hallucinations
 Subcortical changes
 Frontotemporal Dementia: “I don’t seem to care like I used to.
Sometimes I think I just can’t love any more”; “I really don’t
notice. At the time I can’t see anything wrong with what I do. I
only understand it later when they’re explaining it”
 Frontal changes and their effects on emotion and
relationships
Lessons from Neuropsychology and
cognitive dementia assessment
 Lewy Body Dementia: “One minute it’s all going swimmingly
and the next all weird stuff is happening and I have to work out
where I am again”
 Sudden disconnections and hallucinations
 Subcortical changes
 Frontotemporal Dementia: “I don’t seem to care like I used to.
Sometimes I think I just can’t love any more”; “I really don’t
notice. At the time I can’t see anything wrong with what I do. I
only understand it later when they’re explaining it”
 Frontal changes and their effects on emotion and
relationships
Evidence base for interventions
with people affected by dementia
Type of Intervention Selected references
MCI interventions Tuokko & Hultsch, 2006; Cantegreil-
Kallen et al., 2009
Adjustment to the illness (e.g. through
support groups)
Cheston and Jones,2009; Sorensen et
al., 2008; Logsdon et al., 2010; Sadek
et al., 2011
Education about dementia symptoms and
coping strategies
Moniz-Cook et al, 2006; 2008
Psychological therapies for depression and
anxiety (e.g. CBT)
Lipinska, 2009; Miller and Reynolds,
2006
Life Story and Reminiscence Young, Howard and Keetch, 2013;
Cochrane Collaboration Review:
Woods et al, 2009
Dementia Cafés Jones, 2010
Cognitive Stimulation Therapy Cochrane Collaboration Review:
Woods et al., 2012; Orrell et al., 2012
Evidence base for interventions with
families of people affected by dementia
Type of Intervention Selected references
Cognitive rehabilitation in early dementia and
help to maintain activities of daily
living/lifestyle
Clare et al., 2010; Kurz et al., 2011 ;
Graff et al., 2006; 2008
Group and individual adjustment work with
carers
Cochrane Collaboration Review:
Vernooij Dassen et al., 2011;
Charlesworth et al., 2009
Coping strategies and stress management for
carers
Cooper et al., 2012
Understanding ‘challenging behaviours’ Selwood et al., 2007
Headline up-dates (selected by Bob Woods)
 Major studies underway on cognitive rehabilitation (the
GREAT trial – Clare et al., 2013) and creative arts and
dementia (Windle et al., 2014)
 CBT for anxiety (10 individual sessions) reduces anxiety and
depression (Spector et al., 2015)
 Manual based coping strategy programme improves mood
and QoL of family carers (START – Livingston et al., 2013)
 Individual cognitive stimulation (delivered by family carers)
improves quality of relationship reported by person with
dementia and quality of life reported by family carer (Orrell
et al., 2015)
 Individual life story work associated with improved quality of
life of person with dementia and quality of relationship rated
by relative (Subramaniam et al., 2013)
 Can you do CBT with people with dementia?
 What we thought in the 1980s
 Adaptations to the model (Ken Laidlaw 2015)
 Written materials, overlearning, simplify models
 Behavioural elements, Breathing , Relaxation
 Emotional processing of Anxiety, Trauma
 IAPT
 Specialist
 Carers: e.g. START
Cognitive Behaviour Therapy
(CBT)
START:
STrAtegies for RelaTives
First Randomised Controlled Trial (RCT) in the
UK to test a manual based therapy for
dementia carers.
First study worldwide to test the effectiveness
of graduates without clinical qualifications in
delivering therapy to this group.
Delivered to individuals.
START Results: Clinically effective
• Carers receiving START did better
than controls at both the 8 months
and two year follow-ups.
• After two years, carers in the control group were seven times more likely to
be depressed than those who had received START ((OR) = 0.14 (95% CI: 0.04 to 0.53).
• Quality of life was higher for carers receiving START than the control group
(difference in means = 4.09; 95% CI: 0.34 to 7.83).
Effects of life story book on others
• Significant improvements in staff attitudes (hopefulness and person-centred),
staff knowledge regarding the resident and rating by relative of quality of
relationship with resident all occur between 12 and 18 weeks i.e. when resident
has completed life story book
Future Provision ?
of Psychological Therapies for Depression
and Anxiety in Early Dementia
 How do we make best use of a scarce resource
 Increasing numbers of early/moderate diagnosis
 The arrival of the baby boomers
 Targeting to best effect
 Training, supervision vs provision
 How to increase expertise and maintain momentum
 What one day training can and can’t achieve
 A structure to continue and grow?
Implementation of psychosocial
interventions
 How are people with dementia and carers matched with
appropriate interventions – who assesses / matches?
 One size does not fit all – can we predict what will work
for whom? E.g. coping styles, mood, interests?
 What are the criteria for an evidence-based intervention –
what is ‘evidence’ (NB NICE guidelines for dementia care
now under revision)
 How best to include in MSNAP accreditation criteria?
Psychological Therapies –
the Challenge
 One size does not fit all – can we predict what will work for
whom? E.g. coping styles, mood, interests?
 What are the criteria for evidence-based intervention – what
is ‘evidence’ (revision of NICE guidance)
 Affordability of specialist treatments
 Manualised approaches, brief training in specific therapies,
IAPT Services
 Maintaining a place for (expensive) specialist services for
complex cases, training, supervision, innovation and research
Concerns over gaps and time limits in provision
Uncertainty over who should provide this
Concerns over levels of expertise in specialist approaches
One year – and then what? Dipping in and out
Evidence for efficacy of some post-diagnostic interventions for
both people affected by dementia and their families
Persuasive arguments for stepped care model of provision
A post-diagnostic psycho-social intervention gap - diagnosis
without adequate support may not be beneficial, and in some
respects be detrimental
Summary

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Dementias and psychological therapies

  • 1. Psychological Therapies for Depression and Anxiety in Dementia Dementias 2017 The Royal College of General Practitioners London 9/10 February 2017 Reinhard Guss, Consultant Clinical Psychologist, Clinical Neuropsychologist Chair of Faculty for the Psychology of Older People
  • 2. Why therapy in dementia?  Most feared condition in over 50s  Existential threat to self  Uncertainty of progression  Activation of life long vulnerabilities  Day-to-day chronic stress and “failures”  Undermining of lifelong coping styles  Improving functioning through increased well being  Improving cognitive functioning (treat excess disability)  Adjustment to role reversals and relationship changes  Coping with loss and grief
  • 3. Excess Disability  In healthy people anxiety and depression affect cognitive functioning:  Executive functioning: processing speed and capacity, “tunnel vision”, judgement, reasoning, attention, planning  New learning, delayed memory  Visual/spatial processing and perception  Language, word finding, expression, fluency  A compromised brain is more vulnerable, the effects of anxiety /depression are heightened and more disabling  Reducing excess disability can be highly effective in improving quality of life and functioning.
  • 4. Predisposing Factors Stress and Coping  Lazarus’ Model of Stress and Coping:  Appraisals of perceived resources vs perceived threats  Coping skills vs challenges/stressors  A certain level of “stress” is good for you  Dementia creates daily hassles and raises stress levels  Diagnosis is a “life event” adding significant stress  Resources are mobilised but dementia undermines coping  A tipping point is reached  Chronic stress – Anxiety symptoms – Exhaustion - Depression
  • 5. Predisposing Factors Vulnerability & Stress  Vulnerability-Stress Model of the aetiology of Anxiety/Depression: pre-existing factors increasing likelihood  Early losses, deprivation, trauma  Personality, previous reaction of anxiety, depression, ocd  Relationships  Extrovert/introvert  Locus of control beliefs  Assertiveness, confidence, self doubt  Assessment of vulnerabilities, towards prevention 
  • 6. What is therapy in dementia work?  Working with family carers:  preventing relationship breakdown,  maintaining mental and physical health,  avoiding premature admission to care  Working with care staff in care homes and community:  Avoiding hospital admission and placement breakdown  Working with people with a dementia:  Making the diagnostic process helpful for living well  Reducing excess disability from depression, anxiety  Improving cognitive functioning through strategies
  • 7. Prevalence  The surprising lack of reliable data  Early diagnosis of large numbers of people is relatively recent!  Depression: 20% - 40% of people with dementia, mostly later stages, poorly defined samples, worse in care homes, more than same age without dementia  Anxiety: 5% - 72% in people with dementia, depending on definition, very high for anxiety “symptoms” short of meeting diagnostic criteria.  OCD, PTSD: no data or prevalence studies?  Anecdotal evidence from clinical practice, case studies!
  • 8. Psychological Therapy is Treatment!  Knowledge gained in biomedical research – is it proportionate to expense?  Since Cholinesterase inhibitors, no successful new drug treatments developed (yet?)  Recent increase in funding for “care” research, including psychological therapies  Rapid growth in adaptations to existing therapies and available approaches in clinical practice  The recent new treatments are psychological therapies: CST, Lifestory Work, Cognitive Rehabilitation
  • 9. Lessons from Neuropsychology, ABI and ID: CST and Cognitive Rehabilitation  Cognitive Stimulation Therapy  Manualised programme, group format  First to be researched to RCT standard  Ongoing developments  Current NICE guidance  Cognitive Rehabilitation  Based on neuropsychological data  Individualised goals and strategies  GREAT trial: providing evidence for NICE, RCT in progress  Using CR to treat depression in dementia (proposal submitted)
  • 10. Cognitive disability and psychological therapy: lessons from Neuropsychology, Acquired Brain Injury and Intellectual Disability  Therapy works!  Reductions in distress, increase in functioning, improvement in excess disability  Therapy works better with experienced therapists  Understand nature of cognitive disabilities, are familiar with the client group, are knowledgeable about the nature, specific issues and interactions of cognitive difficulties, their causes and wider societal and relational effects
  • 11. Lessons from Neuropsychology and cognitive dementia assessment  Alzheimer’s Disease: “I can’t remember any of the facts of what went on, but I do remember how it made me feel”  Hippocampus vs Amygdala?  A typical profile of forgetting  Vascular Dementia: “ I never know if it will work or not. I just can’t figure it out. When I sleep on it, it often works out later”  Unpredictability of blood flow  Uncertainty of subcortical connections  Vascular Dementia: “ everything takes me forever to do; I used to be so keen, now I just cant really be bothered”  Slowing of processing, anhedonia or Depression?
  • 12. Lessons from Neuropsychology and cognitive dementia assessment  Lewy Body Dementia: “One minute it’s all going swimmingly and the next all weird stuff is happening and I have to work out where I am again”  Sudden disconnections and hallucinations  Subcortical changes  Frontotemporal Dementia: “I don’t seem to care like I used to. Sometimes I think I just can’t love any more”; “I really don’t notice. At the time I can’t see anything wrong with what I do. I only understand it later when they’re explaining it”  Frontal changes and their effects on emotion and relationships
  • 13. Lessons from Neuropsychology and cognitive dementia assessment  Lewy Body Dementia: “One minute it’s all going swimmingly and the next all weird stuff is happening and I have to work out where I am again”  Sudden disconnections and hallucinations  Subcortical changes  Frontotemporal Dementia: “I don’t seem to care like I used to. Sometimes I think I just can’t love any more”; “I really don’t notice. At the time I can’t see anything wrong with what I do. I only understand it later when they’re explaining it”  Frontal changes and their effects on emotion and relationships
  • 14. Evidence base for interventions with people affected by dementia Type of Intervention Selected references MCI interventions Tuokko & Hultsch, 2006; Cantegreil- Kallen et al., 2009 Adjustment to the illness (e.g. through support groups) Cheston and Jones,2009; Sorensen et al., 2008; Logsdon et al., 2010; Sadek et al., 2011 Education about dementia symptoms and coping strategies Moniz-Cook et al, 2006; 2008 Psychological therapies for depression and anxiety (e.g. CBT) Lipinska, 2009; Miller and Reynolds, 2006 Life Story and Reminiscence Young, Howard and Keetch, 2013; Cochrane Collaboration Review: Woods et al, 2009 Dementia Cafés Jones, 2010 Cognitive Stimulation Therapy Cochrane Collaboration Review: Woods et al., 2012; Orrell et al., 2012
  • 15. Evidence base for interventions with families of people affected by dementia Type of Intervention Selected references Cognitive rehabilitation in early dementia and help to maintain activities of daily living/lifestyle Clare et al., 2010; Kurz et al., 2011 ; Graff et al., 2006; 2008 Group and individual adjustment work with carers Cochrane Collaboration Review: Vernooij Dassen et al., 2011; Charlesworth et al., 2009 Coping strategies and stress management for carers Cooper et al., 2012 Understanding ‘challenging behaviours’ Selwood et al., 2007
  • 16. Headline up-dates (selected by Bob Woods)  Major studies underway on cognitive rehabilitation (the GREAT trial – Clare et al., 2013) and creative arts and dementia (Windle et al., 2014)  CBT for anxiety (10 individual sessions) reduces anxiety and depression (Spector et al., 2015)  Manual based coping strategy programme improves mood and QoL of family carers (START – Livingston et al., 2013)  Individual cognitive stimulation (delivered by family carers) improves quality of relationship reported by person with dementia and quality of life reported by family carer (Orrell et al., 2015)  Individual life story work associated with improved quality of life of person with dementia and quality of relationship rated by relative (Subramaniam et al., 2013)
  • 17.  Can you do CBT with people with dementia?  What we thought in the 1980s  Adaptations to the model (Ken Laidlaw 2015)  Written materials, overlearning, simplify models  Behavioural elements, Breathing , Relaxation  Emotional processing of Anxiety, Trauma  IAPT  Specialist  Carers: e.g. START Cognitive Behaviour Therapy (CBT)
  • 18. START: STrAtegies for RelaTives First Randomised Controlled Trial (RCT) in the UK to test a manual based therapy for dementia carers. First study worldwide to test the effectiveness of graduates without clinical qualifications in delivering therapy to this group. Delivered to individuals.
  • 19. START Results: Clinically effective • Carers receiving START did better than controls at both the 8 months and two year follow-ups. • After two years, carers in the control group were seven times more likely to be depressed than those who had received START ((OR) = 0.14 (95% CI: 0.04 to 0.53). • Quality of life was higher for carers receiving START than the control group (difference in means = 4.09; 95% CI: 0.34 to 7.83).
  • 20.
  • 21. Effects of life story book on others • Significant improvements in staff attitudes (hopefulness and person-centred), staff knowledge regarding the resident and rating by relative of quality of relationship with resident all occur between 12 and 18 weeks i.e. when resident has completed life story book
  • 22. Future Provision ? of Psychological Therapies for Depression and Anxiety in Early Dementia  How do we make best use of a scarce resource  Increasing numbers of early/moderate diagnosis  The arrival of the baby boomers  Targeting to best effect  Training, supervision vs provision  How to increase expertise and maintain momentum  What one day training can and can’t achieve  A structure to continue and grow?
  • 23. Implementation of psychosocial interventions  How are people with dementia and carers matched with appropriate interventions – who assesses / matches?  One size does not fit all – can we predict what will work for whom? E.g. coping styles, mood, interests?  What are the criteria for an evidence-based intervention – what is ‘evidence’ (NB NICE guidelines for dementia care now under revision)  How best to include in MSNAP accreditation criteria?
  • 24. Psychological Therapies – the Challenge  One size does not fit all – can we predict what will work for whom? E.g. coping styles, mood, interests?  What are the criteria for evidence-based intervention – what is ‘evidence’ (revision of NICE guidance)  Affordability of specialist treatments  Manualised approaches, brief training in specific therapies, IAPT Services  Maintaining a place for (expensive) specialist services for complex cases, training, supervision, innovation and research
  • 25. Concerns over gaps and time limits in provision Uncertainty over who should provide this Concerns over levels of expertise in specialist approaches One year – and then what? Dipping in and out Evidence for efficacy of some post-diagnostic interventions for both people affected by dementia and their families Persuasive arguments for stepped care model of provision A post-diagnostic psycho-social intervention gap - diagnosis without adequate support may not be beneficial, and in some respects be detrimental Summary