Faculty of the Psychology of Older People Psychological Approaches in the Early Stages of Dementia Update from the Faculty Dementia Work Stream

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Faculty of the Psychology of Older
PeoplePsychological Approachesin the Early
Stages of DementiaUpdate from the Faculty
Dementia Work Stream

• Dementia Action Alliance, 20 November 2013

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The BPS/FPOP Dementia Workstream

• July 2010 Inception of Dementia Workstream
• Faculty response to Dementia Strategy/PMs
  Challenge
• Joint working with Key stakeholders and DAA
• April 2013 Psychosocial Alternatives to
  Prescribing of Antipsychotic Medication
• December 2012 Constitution of writing groups on
  psychological aspects of working with people in
  the early stages of dementia
• Pre-diagnostic counselling and consent
• Cognitive assessment
• Communicating about dementia diagnosis
• Psychosocial interventions in early/moderate
  dementia

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Pre-diagnostic counselling and consent

• Research and policy advocate early diagnosis
• Research has evidenced that people who are
  unprepared for a diagnosis of a dementia
  experience shock and anxiety
• Assessment and feedback needs to be
  individualised (based on actual not perceived
  need)
• Unrealistic expectations of the assessment and
  diagnosis process causes distress when these are
  not met
• pre-assessment counselling can address these
  issues
• (Banerjee et al, 2009 DoH, 2009 Prince et al,
  2011)

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Psychological factors in pre-assessment
counsellingJourney begins prior to
involvement with services influences how people
engageUsing the word dementia and exploring
understandings of dementia allows for progressive
disclosure and informed consent (checking
understanding of why referred, assessment
process, outcomes and implications, including
diagnostic uncertainty and limitations of
treatment). This is an on going processAllows
to establish ways of coping/ identify those at
risk of greater distress or who are more
vulnerableRetaining autonomy (including pace,
timing, choice)modelling the person being in
controlInfluence of stigma and personal,
societal and cultural perspectives on individual
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• Challenges in pre-assessment counselling
• Working with families (may have different
  perspectives and needs)
• Balancing honesty with maintaining hope
  (including focussing on strengths as well as
  needs)
• Respecting an individuals right to decline an
  assessment
• Workforce implications (skilled work, which can
  have an emotional impact on staff)
• More research is needed

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Cognitive Assessment

• Cognitive assessment should be a positive
  experience
• Route to a diagnosis
• Answer questions about cognitive abilities
• Provide an account of strengths and potentials
• To give people the best chance of making the most
  of their abilities, at an early stage
• Poor quality assessments are costly for those
  they are attempting to assess, services and
  society

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Types of cognitive assessment

• Hierarchy of assessments
• Basic cognitive screens e.g. 6 item Cognitive
  Impairment Test (6 CIT)
• Advanced cognitive screens e.g. Montreal
  Cognitive Assessment (MoCA)
• Intermediate cognitive assessments e.g.
  Addenbrookes Cognitive Assessment III
  (ACE-III)
• Comprehensive neuropsychological assessments

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Good quality assessment

• All assessments need qualified, trained and
  supervised staff to administer, score, and
  interpret.
• Advanced assessments need advanced training and
  experience
• Clinical psychologists and neuropsychologists
  have the highest levels of training and
  experience
• All tests have limitations and a potential for
  error
• Good services monitor the quality of cognitive
  assessments and actively seek out and correct
  errors

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Communicating a diagnosis of Dementia

• Targets to increase rates of early diagnosis
  (DoH, 2012)
• 50 of people living with a dementia have not
  received a diagnosis (DoH, 2012)
• Increased referrals to Memory Clinics for
  neuropsychological assessment
• Exciting opportunity to embrace as Clinical
  Psychologists to invest our skills, knowledge and
  application in the process of giving a diagnosis
• With the inclusion of Clinical Psychologists
  making diagnoses, reduction in waiting times
  between assessment and diagnosis
• A reduction in waiting times for a memory clinic
  and/or neuropsychological assessment appointment

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A Stepped care model of assessment diagnosis and
intervention
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Psychosocial InterventionsProf Richard Cheston

• Potential benefits of an early diagnosis include
  
• Helping people to
• adjust to the illness and
• prepare for the future
• Reduced stress for families
• Delayed and reduced risk of institutionalisation
• Savings to the health and social care economy

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The Psychosocial gap

• National policy and the Prime Ministers
  Challenge focus on service improvement through an
  ambition for 66 of people diagnosed early, but
  other than for anti dementia drugs, there is no
  clear guidance about
• What post-diagnostic support should be available
• Where and who should provide it
• Memory clinic targets focus on assessment,
  diagnosis and medication
• Primary care - may lack resources and specialist
  knowledge
• Third sector issues around integration
• There are concerns about
• Lack of provision
• Implications of diagnosis with little support
• Equality of access e.g. for those who dont
  receive medication

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Good post-diagnostic support

• Needs to be timely and sensitively paced
• Includes working at different levels
• providing opportunities for rehabilitation and
  adjustment, possibly through psychotherapy or
  peer support groups and
• working with the person with dementia/their
  carer/system
• Stepped system of care to match needs

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Evidence base for interventions with people
affected by dementia and family carers
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
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Evidence base for interventions with people
affected by dementia and family carers
Type of Intervention Selected references
Cognitive rehabilitation in early dementia Clare et al., 2010 Cochrane Collaboration ReviewBahar-Fuchs et al., 2013 
Occupational therapy interventions to help maintain activities of daily living/lifestyle Graff et al., 2006 2008
Group and individual adjustment work with carers Livingston et al., 2013  Knapp et al., 2013  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 Cochrane Collaboration Review Moniz-Cook et al., 2012 Selwood et al., 2007
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Summary

• Concerns over lack of provision, and uncertainty
  over who should provide this
• 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 intervention gap - diagnosis
  without adequate support may not be beneficial,
  and in some respects be detrimental

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Involving People Living with Dementia

• Working with Dementia Engagement and Empowerment
  Project (DEEP) to consult with people living with
  dementia
• Two joint pilot workshops on early/timely
  diagnosis and psychosocial interventions
• Document by people with dementia identifies
• Importance of early diagnosis
• Need for comprehensive psychosocial aftercare
• Lack of information on psychological and
  psychosocial interventions

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A Compendium of Psychosocial Interventions

• Following request from dementia service users
• Gathering the main psychological and psychosocial
  interventions evidenced and recommended in
  early/moderate dementia
• Accessible language and structure
• What is it? How does it work? Who can offer it?
  What are the benefits/possible down sides? What
  is the evidence?
• Needs post diagnosis linked to possible
  interventions
• Alphabetical order

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Consultation Launch

• BPS briefing paper, good practice guide,
  commissioning guidance planned for autumn 2014
• Joint events with DAA members throughout 2014
• 15 Jan 2014 at BPS London (RCPsych, AS)
• April 2014 (RCN)
• DEEP service user consultation national roll out
• BPS/FPOP consultation with DAA partner
  organisations

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Consultation Launch

• Draft papers on DAA website
• Draft papers on FPOP website
• http//www.psige.org/info/earlydiagnosisindemen
  tia
• Comments to Reinhard Guss, Dementia Workstream
  Lead
• Reinhard.guss_at_kmpt.nhs.uk

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Acknowledgements

• Pre-diagnostic Counselling and Consent
• Jenny Lafontaine Dr Anna Buckell
• Cognitive Assessment
• Daniel Collerton Dr Rachel Domone Dr Sylvia
  Dillon
• Communicating Diagnosis
• Dr Gemma Murphy Elodie Gair
• Psychosocial Interventions
• Prof Esme Moniz-Cook Prof Rik Cheston Sue
  Watts Reinhard Guss
• Involving People with Dementia
• Nada Savich Keith Oliver Kent Forget-Me-Nots
  DEEP
• Compendium of Psychosocial Interventions
• Sue Watts Prof Esme Moniz-Cook Reinhard Guss
  James Middleton
• Alex Bone Lewis Slade