Faculty of the Psychology of Older People

Psychological Approachesin the Early Stages of

Dementia

Update from the Faculty Dementia Work Stream

Dementia Action Alliance, 20 November 2013

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 dementiaPre-diagnostic counselling and consentCognitive assessmentCommunicating about dementia diagnosisPsychosocial interventions in early/moderate dementia

The BPS/FPOP Dementia Workstream

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

Psychological factors in pre-assessment counselling

“Journey” begins prior to involvement with services – influences how people engage

Using 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 process

Allows to establish ways of coping/ identify those at risk of greater distress or who are more vulnerable

Retaining autonomy (including pace, timing, choice)…modelling the person being in control

Influence of stigma and personal, societal and cultural perspectives on individual

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

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

Cognitive Assessment

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

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

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

Step 4: Provision of time to accommodate to the nature of the diagnostic processProvision of time to allow for full disclosure

Step 3: Service Provision of treatment and supportIncorporating the progressive nature of the diagnostic process into the treatment

approach

Step 2: Provision of informationDiagnostic feedback session

Step 1: Preparation and understanding of informationPreparing yourself, patient, family and carer

A Stepped care model of assessment diagnosis and

intervention

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

Psychosocial InterventionsProf Richard Cheston

The Psychosocial gapNational 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 :1.What post-diagnostic support should be available2.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

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

Good post-diagnostic support

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

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 Review:Bahar-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

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

Summary

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

Involving People Living with Dementia

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

A “Compendium” of Psychosocial Interventions

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

Consultation Launch

Draft papers on DAA website Draft papers on FPOP website:

http://www.psige.org/info/early+diagnosis+in+dementia

Comments to: Reinhard Guss, Dementia Workstream Lead Reinhard.guss@kmpt.nhs.uk

Consultation Launch

Pre-diagnostic Counselling and Consent:Jenny Lafontaine; Dr Anna BuckellCognitive Assessment:Daniel Collerton; Dr Rachel Domone; Dr Sylvia DillonCommunicating Diagnosis:Dr Gemma Murphy; Elodie GairPsychosocial Interventions:Prof Esme Moniz-Cook; Prof Rik Cheston; Sue Watts; Reinhard GussInvolving People with Dementia:Nada Savich; Keith Oliver; Kent Forget-Me-Nots; DEEPCompendium of Psychosocial Interventions:Sue Watts; Prof Esme Moniz-Cook; Reinhard Guss; James Middleton;Alex Bone; Lewis Slade

Acknowledgements