Assessment, diagnosis and disclosure

Assessing people for dementia, making a diagnosis of dementia and disclosing the diagnosis falls within the remit of medical and nursing professionals in a variety of settings. Published articles in this section includes papers on help seeking intentions, papers on various aspects of the processes used during assessment and diagnosis and papers on the disclosure of a diagnosis.

Detecting delirium superimposed on dementia: diagnostic accuracy of a simple combined arousal and attention testing procedure.

Richardson, S.J., Davis, D.H., Bellelli, G., Hasemann, W., Meagher, D., Kreisel, S.H., MacLullich, A.M., Cerejeira, J. and Morandi, A.
International Psychogeriatrics
As discussed in another paper in this review, it is difficult to diagnose delirium where dementia already exists. Richardson et al. (2017) hypothesised that a combined arousal and attention testing procedure could accurately detect delirium superimposed on dementia (DSD).
Patients over 70yrs of age were recruited from five hospitals across Europe, including Ireland. Attention was measured using a vigilance task and arousal was measured using OSLA (Tieges et al., 2013). The authors found that this combination of tests specifically identified delirium in patients with and without dementia, with high levels of accuracy. Acknowledging limitations such as small sample size and the fact that only prevalent delirium was examined, the authors argue that the findings suggest such an approach could have major clinical utility.

The diagnosis if delirium superimposed on Dementia; An emerging challenge

Morandi, A., Davis, D., Bellelli, G., Arora, R.C., Caplan, G.A., Kamholz, B., Kolanowski, A., Fick, D.M., Kreisel, S., MacLullich, A. and Meagher, D.
Journal of the American Medical Directors Association
Delirium is defined in both DSM-5 and ISD-10 but no criteria is provided for it's assessment, nor for the assessment of pre existing cognitive impairment.
This lack of standardised assessment has clinical and research implications and prompted the establishment of a task force to review any evidence of DSD diagnosis, clarify key elements of diagnosis and formulate a path for the future direction of research in this area. Morandi et al. (2017) describe key features of DSD, such as attentional deficits, the role of arousal and motor fluctuations, reviewing related approaches to assessment.. They also discuss the potential overlap between symptoms of specific dementias and delirium, particualry dementia with Lewy bodies. They conclude with a suggested framework for improving diagnosis of DSD and details of the research needed to support the framework.

What do people with dementia and their carers want to know about neuroimaging for dementia?

Featherstone, H., Butler, M.L., Ciblis, A., Bokde, A.L., Mullins, P.G. and McNulty, J.P.
Featherstone et al. (2015) used focus groups and structured interviews to investigate people with dementia and carers' knowledge of dementia diagnosis pathways, the role of neuroimaging in diagnosis and what might be included on a website providing neuroimaging information.
Results indicated very limited understanding of neuroimaging and its role in diagnosis. Participants felt that better explanations could reduce anxiety and also add validity to a diagnosis, with the potential for avoiding diagnosis denial. While both carers and people with dementia were keen to have more information on neuroimaging they pointed out that the information needs to be focused on the person with dementia and carer’s specific needs. People with dementia were found to be unlikely to use an internet resource, but carers were particularly interested in such a resource. Again, they wanted this to be specific to the stage and sub type of dementia they had experience of. Findings indicate a level of dissatisfaction with current resources on dementia and a need for any information to be perceived as trustworthy and accurate. The authors conclude there is a need for better neuroimaging information and that this research can inform the development of an online resource and the investigation of other methods for providing information.

Aide memoire: What should a memory clinic or a memory assessment service look like

O’Carroll, T., Glynn, K., Lyons, D. and Looney, K
Irish Journal of Psychological Medicine
In this article O’Carroll et al. (2016) review the current models of memory clinics in Ireland. Of the 17 memory clinics across the country, at least half have input from old age psychiatry, with some operating at a purely diagnostic level.
Less than half of clinics surveyed in 2011 were actively engaged in research. The authors express concern that many clinics do not have access to other health professionals such as neuropsychologists, occupational therapists and social workers, commenting on a potential over reliance on pharmacological therapies. They also highlight the apparent arbitrary location of memory clinics with many areas where a high prevalence of dementia exists, having no access to specialist services. The paper details one of four private, not for profit clinics that takes a multi professional, collaborative approach offering comprehensive evaluation and a commitment to research. The complicating factor of public and privately funded health services in the Republic of Ireland is highlighted with the authors arguing for more standardisation and integration of memory assessment services.

Importance of different language versions of cognitive screening tests: Comparison of Irish and English versions of the MMSE in bilingual Irish patients.

Chaoimh, D.N., De Bhaldraithe, S., O'Malley, G., Bhuí, C.M.A. and O’Keeffe, S.T.
European Geriatric Medicine
The mini mental state examination (MMSE) is widely used across Ireland to assess cognition, even in areas where the first language is Irish. This study translated the exam into Irish and tested performances of both English and Irish versions in a bilingual older hospital population.
Scores were significantly higher for the Irish Version with the greatest difference being among those who had been monolingual Irish speakers up to 5 years. While they acknowledge the limitations of the study being carried out in a small region, the authors suggest it has wider implications across Europe where bilingualism is common.

Help Seeking Intentions for Early Dementia Diagnosis in a Sample of Irish Adults

Devoy, S. and Simpson, E.E.A
Aging and Mental Health
In a mixed methods study using the theory of planned behaviour, Devoy & Simpson (2017) set out to identify factors that might increase help seeking intentions for an early dementia diagnosis.
Three focus groups informed the development of a quantitative questionnaire administered to 95 community dwelling adults aged 50-69 years. They found good knowledge of dementia but poor knowledge of post diagnosis support. Fear, stigma and shame were identified as barriers to help seeking behaviours while family friends and peers were considered the most likely to support help seeking behaviour. The main predictors of help seeking intentions for early diagnosis were found to be indirect measures of subjective norms and knowledge of dementia.

Current Practice in the referral of Individuals with suspected dementia for neuro imaging by General Practitioners in Ireland and Wales.

Ciblis, A.S., Butler, M.L., Quinn, C., Clare, L., Bokde, A.L., Mullins, P.G. and McNulty, J.P.
PLoS One
In this survey approximately 2500 questionnaires were distributed to GPss in Ireland and Wales with a response rate of 17.9% and 17.6% respectively.
Ciblis et al (2016) found that 48.6% of Irish respondents and 24.3% of Welsh respondents directly refer patients for neuro imaging where they suspect dementia. However only a third of GPs expressed some confidence in selecting the appropriate neuro imaging modality and the majority lacked confidence in understanding neuro imaging in dementia. Very few had received training in this area and only one fifth of Irish and a third of welsh GPs had received any dementia specific training. The authors suggest further training in neuro imaging is required but also that the findings raise the question of whether GPs should be using direct referral for neuro imaging in dementia.

Neuroimaging in dementia and Alzheimer's disease: Current protocols and practice in the Republic of Ireland.

Kelly, I., Butler, M.L., Ciblis, A. and McNulty, J.P.
Kelly et al.(2016) begin by pointing out that the majority of people living with dementia do not have a formal diagnosis. A questionnaire was sent to 94 CT, MRI and PET departments across the Republic of Ireland to establish if their imaging modality was used specifically to diagnose dementia.
Of these, 43% of CT departments, 40% of MRI departments and 50% of PET responded that their modality is being used to diagnose dementia. While radiologists and clinical specialist radiographers were evidenced to be involved in protocol development, standarised protocols for neuroimagng in dementia do not currently exist in Ireland. The lack of consensus on optimal protocols limits the potential of novel neuroimaging in practice and the authors conclude that international guidelines are warranted.

The use of neuroimaging in dementia by Irish general practitioners.

Ciblis, A.S., Butler, M.L., Bokde, A.L.W., Mullins, P.G. and McNulty, J.P.
Irish Journal of Medical Science
This paper set out to investigate GP access to neuroimaging, referral patterns, GP confidence around referral and opinions on radiology reports. A postal survey was issued to Irish GP’s in rural, semi-rural and urban areas and 302 questionnaires were returned.
Most respondents rated diagnosis within their HSE region as excellent; two thirds of respondents in Dublin and Cork but 80% of respondents in Kildare and 100% in Monaghan rated this as poor. Almost half of respondents referred patients with suspected dementia for neuroimaging but one third did not have access to a MRI scan. Acess was found to be considerably easier for private patients than public patients. Most GPs did not follow clinical guidelines and were unaware of dementia specific guidelines. Of those who made referrals, most found radiology reports useful and were confident of their ability to understand the report. Ciblis et al. (2016) conclude that clear referral protocols are required with appropriate training for GPs and that access to neuroimaging should improve so that it is available to every patient regardless of location and of whether the GP practice is public or private.

Normative CERAD-NP Performance among Community-Dwelling Older Adults in Ireland

Clinical Gerontologist

Highlighting the need for good dementia screening tools, Murphy (2012) aimed to provide normative data for the Consortium to Establish a Registry for Alzheimer’s Disease Neuropsychological (CERAD-NP; Morris et al., 1989) test battery, derived from an Irish-based sample.

This test battery has been found effective in distinguishing between Alzheimer’s disease, dementia, mild cognitive impairment and normal ageing. Ninety-nine participants deemed cognitively normal (MMSE=23 or above) undertook the battery of tests and results were then spilt according to education and age. No significant relationship between age and cognitive performance was found. In line with other studies there were some differences between lower and higher education levels supporting the concept of cognitive reserve related to higher education.  While norms in the Irish sample are generally in line with the US and Australia, a significant difference is found in the test, confrontational naming. The mean of the Irish sample is more than one standard deviation less than US and Australian samples, and over two standard deviations lower for the more highly educated categories.  The authors suggest that item familiarity is important and that local and cultural norms should be considered for this test. The authors conclude that CERAD-NP norms generated for US and Australian samples can be used in Ireland with the exception of confrontational naming.

Everyday episodic memory in amnestic mild cognitive impairment: a preliminary investigation

BMC Neuroscience

In their study, Irish et al.

(2011) aimed to characterise the nature of the memory impairment in MCI (using experimental tasks probing multiple domains of episodic memory function, including associative, spatial and everyday memory tasks that are analogues of real-world scenarios and are commonly encountered by individuals in their daily lives) and to obtain preliminary data regarding which of these tasks, if any, could potentially serve as an aid to identifying individuals with MCI in the prodromal stages of AD. Longitudinal follow-up data suggested that delayed associative memory performance at baseline may have some predictive utility for subsequent conversion to probable AD. This suggests that a simple Face-Name pairs test may have the potential to be a useful neuropsychological task for identifying individuals in the prodromal stage of AD. 

Orientation to time as a guide to the presence and severity of cognitive impairment in older hospital patients

Neurosurgery and Psychiatry

Given the poor recognition of dementia and delirium in acute hospital setting and that disorientation to time is a very common feature of dementia and delirium, O’Keefe, Mukhtar and O’Keefe (2011) examined temporal orientation and its usefulness as a guide to the presence of deme

ntia or delirium among older in-patients and out-patents of an acute hospital in ROI. Of the 262 patients assessed on the same day by two different doctors, almost one-quarter were found to have dementia or delirium. The authors conclude that temporal orientation, properly recorded and interpreted, may provide a useful screening test for dementia or delirium in older hospital patients. 

Anxiety and behavioural disturbances as markers of prodromal Alzheimer’s disease in patients with mild cognitive impairment

International journal of geriatric psychiatry

In another article concerned with predicting conversion of MCI to Alzheimer’s disease, Gallagher et al. (2011) followed 169 patients with MCI over 27 months, 69 (43%) of whom converted to Alzheimer’s disease.

Neuropsychiatric symptoms were assessed with the Behavioural Pathology in Alzheimer’s disease (BEHAVE-AD) rating scale. Survival analysis revealed that patients with MCI who had symptoms of anticipated anxiety and purposeless activity were approximately twice as likely to have earlier conversion to Alzheimer’s disease than patients with MCI who did not have these symptoms. This finding was independent of age, gender and education. However, since this finding was not independent of cognitive status at baseline, it may be, as the authors conclude, that the neuropsychiatric symptoms of anticipated anxiety and purposeless activity are markers of severity of disease rather than independent predictors of disease progression.    

Detecting prodromal Alzheimer’s disease in mild cognitive impairment: utility of the CAMGOG and other neuropsychological predictors

International journal of geriatric psychiatry

Gallagher et al.

(2010) tested the usefulness of the Cambridge cognitive examination (CAMCOG), a well-established and widely used mini-neuropsychological battery, in detecting prodromal Alzheimer’s disease, and in particular which subtests of CAMCOG are predictive of conversion from mild cognitive impairment (MCI) to Alzheimer’s disease. The study compared CAMCOG and its subtests with an extended version of the delayed word recall (DWR) test. They followed 182 patients with MCI over a mean duration of 26 months, during which 75 (41%) converted to Alzheimer’s disease. The study found that tests of episodic memory were most predictive of conversion to Alzheimer’s disease and the composite memory score contained within CAMCOG was superior to tests of other cognitive domains assessed in CAMCOG. While the DWR test achieved the best predictive accuracy of conversion from MCI to Alzheimer’s disease, the CAMCOG composite memory score perfomed similarly well.  

Which part of the Quick mild cognitive impairment screen (Qmci) discriminates between normal cognition, mild cognitive impairment and dementia?

Age and Ageing

Differentiating MCI from normal cognition and dementia was the topic of an article by O’Caoimh et al. (2013) who tested the assessment tool, Qmci.

They were interested in comparing the sensitivity and specificity of the subtests of the Qmci to determine which were best in differentiating MCI from normal cognition and dementia. They were also keen to refine and shorten the instrument. 

The under-detection of cognitive impairment in Nursing Homes in the Dublin Area: The need for on-going cognitive assessment.

Age and Ageing

While it is known that the majority of people residing in long-stay care settings are likely to have dementia, it is not known how many actually receive a formal diagnosis of dementia. Cahill et al.

(2010) sought to address this gap, and at the same time test a methodology for detecting dementia among residents in long-stay care settings. A sample of 100 residents drawn from across four different nursing homes in Dublin was screened for cognitive impairment using MMSE and MoCA. One-third of the sample (32) had already received a diagnosis of dementia. However, a large proportion was first identified during the screening as having either a mild, moderate or severe cognitive impairment. Given that some of these residents are likely to have dementia, the study points to the under-detection of dementia in long-stay care settings in ROI and highlights the need for on-going assessment. 

A prospective 14-year longitudinal follow-up of dementia in persons with Down syndrome

Journal of Intellectual Disability Research

McCarron et al. (2014) report on a prospective longitudinal study of a convenience sample of people with Down syndrome (DS) attending a memory clinic within an Intellectual Disability service in Dublin.

Seventy-seven women with DS over the age of 35 were enrolled and assessed in a specialist memory clinic service for symptoms of dementia on an annual basis until death. Over a 14 year follow-up period it was found that almost 90% of the women had developed dementia. The mean age at which they developed dementia was 55 years. The study also assessed for co-morbidities and found that epilepsy was significantly more common in those with DS and dementia. 

Screening for Alzheimer’s disease in Downs Syndrome

Journal of Alzheimer’s Disease and Parkinsonism

O’Caoimh, Clune and Molloy (2013) review instruments that are commonly used to screen for Alzheimer’s disease and explore the unique challenges of screening for the presence of Alzheimer’s disease in persons with Down syndrome.

The paper concludes that single, one-dimensional screening tools and opportunistic evaluations are insufficient for detecting dementia in persons with Down syndrome. The paper argues that a better approach is to use batteries of tests, incorporating informant questionnaires, direct neuropsychological testing, assessment of activities of daily living and behaviours, measured at baseline and reassessed at intervals. 

A national survey of memory clinics in the Republic of Ireland

International Psychogeriatrics

Cahill et al. (2014) provided information at a national level on the organization, location, resourcing, staff composition, treatments, waiting time, and numbers of patients attending 14 memory clinics in ROI for the year 2011.

They raised several questions about the goals and outcomes of memory clinics services, questions that are relevant to many countries around the world currently developing and expanding diagnostic and post-diagnostic services to address the increasing prevalence of dementia. 

The personal impact of disclosure of a dementia diagnosis: a thematic review of the literature

British Journal of Neuroscience Nursing

The effects of disclosing the diagnosis to a person with dementia was the subject matter of a literature review conducted by Mitchell et al. (2013).

Only studies from the perspective of the persons with dementia were included and the majority (11/12) were framed within a naturalistic paradigm. The review findings show that feelings experienced by people recently given a diagnosis of dementia ranged from anxiety or fear to relief or the enablement of future planning. The perceived stigma surrounding a diagnosis of dementia was evident in the majority of studies in the review, as was the impact of losing the freedom to drive. 

Uptake of Huntington disease predictive testing in a complete population

Clinical Genetics: An International Journal of Genetics, Molecular and Personalized Medicine

Predictive or pre-symptomatic testing for Huntington disease, an inherited disease and one of the rarer causers of dementia, was the subject of an article by Morrison.

et al (2014), which using the Northern Ireland Huntington disease register estimated that the uptake of pre-symptomatic HD testing in a total population ranged from 12.3% to 14.6%, 10 years into a population testing protocol, and at 14.7% after 20 years of running a predictive testing programme.

Preferences of older people for early diagnosis and disclosure of Alzheimer’s disease (AD) before and after considering potential risks and benefits

Archives of Gerontology and Geriatrics

Robinson et al. (2014) examined the preferences of older people for early diagnosis, disclosure and screening for Alzheimer’s disease.

Participants responded to one question each on diagnosis, disclosure and screening, which was followed by a brief discussion of the positive and negative factors that might be considered when deciding whether or not they would want investigation to see if they had AD or would want to be told that they have the condition. Participants were then asked to respond to the three initial questions again. The study findings support previous research suggesting that most people want to ‘know’ if they have dementia. However, the study reveals important differences in preferences for diagnosis, disclosure and screening. The main conclusion is that preferences differ depending on the question asked and preferences change when people are given the opportunity to consider the consequences. 

Prevalence of frailty-related risk factors in older adults seen by community nurses

Journal of Advanced Nursing

This study by Ballard et al. (2013) describes the frequency of four frailty-related risk factors in a cohort of older adults visited by public health nurses in Dublin, ROI.  Suspected cognitive impairment was one of the frailty risk factors.

The other three were risk of malnutrition, falling, and dependence in ADL. The prevalence of suspected cognitive impairment, measured using the Hodkinson’s Abbreviated Mental Test, was found to be 16.4%, comparable to similar international studies. The study suggests that there is a need to implement a valid and standardised screening tool for use by public health nurses to help them identify older people with suspected cognitive impairment with a view to referral for further assessment for dementia or to rule out other causes negatively affecting memory such as vitamin B deficiency, thyroid disorders, depression, and delirium. 

Diagnosis and disclosure of dementia – A comparative qualitative study of Irish and Swedish General Practitioners

Aging and Mental Health

A cross-country study by Moore and Cahill (2013) explored the attitudes of a convenience sample of nine GPs in ROI and Sweden to dementia diagnosis and disclosure.

It found that GPs largely relied on patients or their families to bring memory problems to their attention, with some GPs expressing reluctance at broaching the subject with them. GPs in both countries reported avoiding using the word ‘dementia’ in conversations with their patients. GPs in ROI were less likely than their counterparts in Sweden to have received specialist training in dementia. There was a marked difference between GPs in ROI and Sweden with regard to their satisfaction with the quantity and quality of community care services. In both countries, GPs believed that societal misunderstandings of dementia are still widespread, so much so that dementia continues to be a stigmatised condition.