Early assessment, diagnosis and disclosure

Early or timely diagnosis of dementia is a priority area of action of many national dementia strategies or plans and this is the case for both ROI and NI. Different approaches can be taken to support dementia diagnosis. A Briefing Paper on Dementia Diagnosis, issued while the Irish National Dementia Strategy was in development, focuses on the lessons to be learned from countries proactively encouraging a more timely diagnosis of dementia. Not everybody with dementia receives a diagnosis of dementia, or at least a timely diagnosis of dementia. Evidence that became available for NI and other regions of the UK during the period under review, but is not yet available for ROI, highlights not only the diagnostic gap but also how widely its varies across different parts of the UK, leading the All-Party Parliamentary Group on Dementia to investigate this discrepancy further and to make specific suggestions for NI around dementia diagnosis. Similarities and differences between the socio-demographic characteristics of people attending two memory clinics, one from each of the two jurisdictions on the island of Ireland, were revealed by another study (Barrett and Savage, 2010), which also has implications for research and policy.   

Briefing Paper on Dementia Diagnosis

Cahill and Pierce
Genio
2014

This briefing paper by Cahill and Pierce (2014) was commissioned by Genio Ltd in advance of the publication In ROI of the Irish National Dementia Strategy.

It describes where and by whom people receive a diagnosis of dementia, provides information on common standardised instruments used in cognitive assessment, the diagnostic criteria recommended for use, the value of neuropsychological testing and current thinking about best practice on disclosure patterns. It gives an overview of approaches to dementia diagnosis in five countries, namely England, France, the Netherlands, Norway and Australia. The final part of the paper identifies key actions for consideration in ROI to support the assessment and timely diagnosis of dementia. 

Mapping the Dementia Gap

CAHILL, S., Pierce, M
Genio
2011

Mapping the dementia gap produced by Tesco, Alzheimer's Society (UK) and Alzheimer Scotland puts figures on the gap between the number of people estimated to be living with dementia (both diagnosed and undiagnosed) across the UK, including NI, and the number that have received a diagnosis of deme

ntia based on the QoF dementia register. A fact sheet outlining dementia diagnosis rates specifically for NI in 2014 is available from the Alzheimer’s Society (UK) website. Equivalent figures are not available for ROI. 

A Comparison of People Seeking Help at Memory Clinics in Belfast and Dublin

Barrett, S., Savage, G.
CARDI
2012

Barrett and Savage (2012) examined socio-demographic and clinical differences in people diagnosed with Alzheimer disease (AD) and MCI attending two specialist memory clinics, one in Dublin and the other in Belfast, and where possible changes over time.

They also examined medications used by people diagnosed with AD and MCI in the memory clinics. The mean age of people receiving a diagnosis of AD in the Dublin clinic was 74, and was lower than the mean age of 78 recorded at the Belfast clinic. A greater proportion of women than men (3:1) received a probable diagnosis of AD in both memory clinics, but data from the Dublin clinic suggests that this gender difference may be narrowing. There were differences between the two memory clinics with respect to educational attainment with a higher proportion of people diagnosed with AD in the Belfast clinic with primary educational only, an indication perhaps that the Dublin clinic attracts people from higher social-economic groups. 

Unlocking Diagnosis: The Key to Improving the Lives of People with Dementia

Alzheimer’s Society
All Party Parliamentary Group
2012

This inquiry by the All-Party Parliamentary Group on Dementia covers all parts of the UK, including NI. Evidence for the inquiry was gathered from people with dementia, carers, family members, health professionals and other organisations and interested others, using a questionnaire.

The inquiry found a range of barriers to diagnosis that included poor public awareness; a need for GP training and problems with the Quality and Outcomes framework within which GPs operate; problems with current assessment tools; variability in memory services provision; and poor post-diagnostic support. Nine general recommendations are made with further specific suggestions for devolved health administrations. In the case of NI it was suggested that the awareness campaign referred to in the regional strategy could be prioritised; that the Health Minister could make a commitment on how data on diagnostic rates already available through the NHS Atlas of Variation could be used in monitoring the progress of the strategy; the Health and Social Care Board and the Public Health Agency could explore options to include questions to identify symptoms of dementia through regular interventions with the over-65s and others at higher risk of dementia.