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The CLAHRC Yorkshire and Humber
Provision of psychosocial interventions post dementia diagnosis - what can we learn from research and practice?
Professor Gail Mountain
Dr Sue Easton
University of Sheffield
The CLAHRC Yorkshire and Humber
Why this study now?
• People are being diagnosed earlier - policy drivers and improved awareness
• Provision of psychosocial interventions post diagnosis is a priority
• Services would benefit from information about what are appropriate evidence based interventions post diagnosis
• Researchers need to engage with this agenda; develop and evaluate promising interventions
The CLAHRC Yorkshire and Humber
The study questions:-
• What interventions (apart from diagnosis and medication management) are being provided by memory services and others across the Yorkshire and Humber region?
• What range of evidence based interventions can be identified from the research base?
• What is the potential for including assistive technologies within the repertoire of memory service provision?
The CLAHRC Yorkshire and Humber
Methods to address the questions
• Audit of memory services across the region to identify services provided and those planned
• Evidence review of psychosocial interventions for people post diagnosis
• Evidence review of psychosocial interventions for family carers/ supporters of people post dementia diagnosis
• Evidence review of assistive technologies and everyday technologies that might be appropriate post dementia diagnosis
The CLAHRC Yorkshire and Humber
The survey• [Delphi (consensus-style)] survey was undertaken across (all)
memory services in the Yorkshire & Humber region from late 2014 to early 2015
• Survey made available in both hard copy and electronic formats and sent to service managers/ clinical directors
• Asked for details of service size (population covered), physical and staffing structure, and current and future provision of psychosocial interventions for people diagnosed with dementia through the NHS and other (e.g. third sector) organisations in the local area who provide such services
• Intention was to undertake a follow on survey based on results of the first but this was not achieved in the time frame
The CLAHRC Yorkshire and Humber
Results
• A return of 15 questionnaires (one of which was not usable) out of 22 sent (response rate of over 68%)
• Cognitive stimulation therapy reported as being the most frequently offered intervention as recommended by NICE guidance
• Nine of the services surveyed stated intention to increase provision in the future and 10 to increase reach to greater numbers
• Alzheimer’s society was the main other provider that was mentioned (by 14 respondents)
The CLAHRC Yorkshire and Humber
Routine offer of services
Please note that respondents could tick multiple boxes
The CLAHRC Yorkshire and Humber
Other interventions that may be available For people with dementia For carers
Patient support group CBT
Cognitive rehabilitation Brief counselling
Life story work IAPT
Reminiscence
Individual CST at home
Assistive technology
The CLAHRC Yorkshire and Humber
Factors that encourage take up
The CLAHRC Yorkshire and Humber
Services in an ‘ideal world’
The CLAHRC Yorkshire and Humber
Discussion points from survey
• Variety of interventions and service offers
• Some innovation in practice; flagship services
• Awareness of importance of living well with dementia and examples of implementation e.g. peer support networks
• No standardisation across services
The CLAHRC Yorkshire and Humber
Evidence reviews of psychosocial interventions for people post diagnosis and carers
Consistent methods used across both reviews
• Scoping reviews conducted to map relevant studies but not assess their quality
• English language articles identified from 1990 to end 2014 from 8 relevant data bases
• References from reviews and key papers until evidence saturation occurred
The CLAHRC Yorkshire and Humber
Inclusion/ exclusion criteria: both reviews
• All types of studies that assessed a specific psychosocial intervention which could realistically be delivered/ commissioned by UK health services
• Involved people who had received a definite/ probable diagnosis of dementia, were in mild/ moderate stages of the condition and were community dwelling or their family/ informal carers
Exclusions: • Involved people with severe dementia or early onset disease or
other conditions • Living in residential settings• Described interventions delivered in day/ institutional settings • Described interventions for professional carers
The CLAHRC Yorkshire and Humber
Limitations of review methodology
• Looked only at interventions for which there is published evidence
• Scoping review methodology looks at spread of evidence; we have not looked in detail at the relative strength of different studies
• Small body of evidence uncovered on dyad interventions which we have not been able to analyse yet
• The findings do not represent innovation in practice due to time lag
The CLAHRC Yorkshire and Humber
Overall findings from the two reviews
• Very difficult to identify who interventions are targeted at/ no standardised reporting: e.g. condition, stage of dementia, length of time a carer, range of outcomes applied
• Limited evidence base for interventions for people with the diagnosis (35 papers) compared to that regarding family carers/ supporters (77 papers)
• Patchy study quality
• Changes in reported interventions over time reflect changing perceptions of dementia and needs of supporters
• Recent review of assistive technologies for people with dementia negated need to undertake a third review (Gibson et al, 2014)
The CLAHRC Yorkshire and Humber
Interventions for people with dementia by type
• Cognitive rehabilitation• Cognitive stimulation• Cognitive/ memory Training• Reality orientation• Reminiscence• Counselling/ psychotherapy• Cognitive behavioural Therapy• Psycho-educational• Support groups• Exercise programmes• Occupational therapy• Self management
The CLAHRC Yorkshire and Humber
Carer interventions by type
Behavioural management Case-management CBT Internet based Physical activity Psycho-education Problem solving therapy Support group Technology-based Others e.g. dance, poetry, yoga, exercise Multi-component
The CLAHRC Yorkshire and Humber
Implications of review findings for practice
• A difficult evidence base to use in practice
• Confused terminology for interventions with the same or overlapping components; e.g. cognitive stimulation therapy/ cognitive training/ rehabilitation/ memory training
• Use of academic jargon e.g. ‘psychoeducational’ which translates into information giving sessions
• Need for interventions to be translated into ‘how to guides’
The CLAHRC Yorkshire and Humber
Questions for you
What do people want – are they being consulted?
Is information being provided in accessible ways?
What are the resourcing issues of providing services post diagnosis?
What contributions can technology make?
How to manage reticence to accept service offers?
The CLAHRC Yorkshire and HumberAcknowledgements: This presentation presents independent research by the Collaboration for Leadership in Applied Health Research and Care Yorkshire and Humber (NIHR CLAHRC YH). The views and opinions expressed are those of the authors, and not necessarily those of the NHS, the NIHR or the Department of Health. CLAHRC YH would also like to acknowledge the participation and resources of our partner organisations. www.clahrc-yh.nihr.ac.uk
Contact details for presenter: Gail [email protected]
Twitter: @clahrc-yhWebsite: www.clahrc-yh.nihr.ac.uk
