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
The BPS/FPOP Dementia Workstream
 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
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
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
 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
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
A Stepped care model of assessment
diagnosis and intervention
Step 4: Provision of time to accommodate to the nature of the diagnostic process
Provision of time to allow for full disclosure
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
Psychosocial Interventions
Prof 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
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 :
1. What post-diagnostic support should be available
2. 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
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
Evidence base for interventions with people
affected by dementia and family carers
Type of Intervention
Selected references
MCI interventions
Tuokko & Hultsch, 2006; CantegreilKallen et al., 2009
Cheston and Jones,2009; Sorensen et
al., 2008; Logsdon et al., 2010; Sadek
et al., 2011
Adjustment to the illness (e.g. through
support groups)
Education about dementia symptoms
and coping strategies
Psychological therapies for depression
and anxiety (e.g. CBT)
Life Story and Reminiscence
Dementia Cafés
Cognitive Stimulation Therapy
Moniz-Cook et al, 2006; 2008
Lipinska, 2009; Miller and Reynolds,
2006
Young, Howard and Keetch, 2013;
Cochrane Collaboration Review:
Woods et al, 2009
Jones, 2010
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
Group and individual adjustment work with
carers
Graff et al., 2006; 2008
Coping strategies and stress management
for carers
Understanding ‘challenging behaviours’
Livingston et al., 2013 ; Knapp et al.,
2013 ; Cochrane Collaboration
Review: Vernooij Dassen et al., 2011;
Charlesworth et al., 2009
Cooper et al., 2012
Cochrane Collaboration Review
Moniz-Cook et al., 2012; Selwood et
al., 2007
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
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
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
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
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
[email protected]
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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presentation - Dementia Action Alliance