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Dementia Action Alliance, 20 November 2013

Faculty of the Psychology of Older People Psychological Approaches in the Early Stages of Dementia Update from the Faculty Dementia Work Stream. Dementia Action Alliance, 20 November 2013. July 2010: I nception of Dementia Workstream Faculty response to Dementia Strategy/PM’s Challenge

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Dementia Action Alliance, 20 November 2013

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  1. 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

  2. July 2010: Inception of Dementia Workstream Faculty response to Dementia Strategy/PM’s 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 The BPS/FPOP Dementia Workstream

  3. 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) Pre-diagnostic counselling and consent

  4. Psychological factors in pre-assessment counselling“Journey” 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

  5. 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 individual’s right to decline an assessment • Workforce implications (skilled work, which can have an emotional impact on staff) • More research is needed

  6. 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

  7. 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. Addenbrooke’s Cognitive Assessment – III (ACE-III) • Comprehensive neuropsychological assessments

  8. 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

  9. 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 Areduction in waiting times for a memory clinic and/or neuropsychological assessment appointment

  10. Step 4: Provision of time to accommodate to the nature of the diagnostic process Provision of time to allow for full disclosure A Stepped care model of assessment diagnosis and intervention Step 3: Service Provision of treatment and support Incorporating the progressive nature of the diagnostic process into the treatment approach Step 2: Provision of information Diagnostic feedback session Step 1: Preparation and understanding of information Preparing yourself, patient, family and carer

  11. 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

  12. The Psychosocial gap • National policy and the Prime Minister’s 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 don’t receive medication

  13. 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

  14. Evidence base for interventions with people affected by dementia and family carers

  15. Evidence base for interventions with people affected by dementia and family carers

  16. 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

  17. 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

  18. 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

  19. 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

  20. Consultation Launch Draft papers on DAA website Draft papers on FPOP website: http://www.psige.org/info/early+diagnosis+in+dementia Comments to: ReinhardGuss, Dementia Workstream Lead Reinhard.guss@kmpt.nhs.uk

  21. 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

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