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P4: Timely diagnosis

Detailed programme, abstracts and presentations

P4: Timely diagnosis

P4.1. National audit of memory clinics in England: a comparison of findings

HODGE Sophie, HAILEY Emma

In 2013 the Royal College of Psychiatrists were commissioned to conduct an audit of memory services in England. The aim of the audit was to collect and report information from all memory clinics in England, including waiting times, patient numbers, costs, aspects of service provision, involvement in research and membership of the Memory Services National Accreditation Programme (MSNAP). This audit was repeated in 2014 and results from the 2 years were compared.

The key differences were:

  • Clinics in 2014 saw on average 30.9% more patients than in 2013 and conducted 6.0% more assessments
  • The average waiting time for an initial assessment increased from 5.2 weeks to 5.4 weeks
  • The longest waiting time for an initial assessment was 32 weeks in 2014, compared with 25 weeks in 2013
  • There was a 19% increase in the number of people with dementia attending Cognitive Stimulation Therapy (CST)
  • There was an 8% increase in the number of carers accessing post-diagnostic education and support
  • The percentage of clinics who ask patients whether they would like to register their interest in participating in research rose from 73% in 2013 to 85.4% in 2014
  • MSNAP membership increased from 33.7% to 47.2%

The key recommendations made in the report were:

  • Resources should be allocated appropriately to memory clinics to ensure that all those who need it receive timely assessment, diagnosis and high quality follow-up care
  • Consideration should be made as to why substantial variation occurs in funding for services
  • Length of wait from referral to first assessment is too great in some areas and needs to be addressed
  • CST is an intervention recommended by NICE and all memory clinics should aim to provide or gain access to this therapy

P4.2. The use of ICT for the assessment of people with dementia and mild cognitive impairment within the Dem@care project

KÖNIG Alexandra

Introduction: Currently, the gold standard for the assessment of cognitive and functional abilities involves questionnaires and clinical rating scales. However, these are often limited in their ability to provide objective and sensitive information. In contrast, information and communication technologies (ICT) may overcome these limitations by capturing more fully the disturbances associated with Alzheimer disease (AD). We investigated the use of different sensors, such as an accelerometer, video monitoring system or audio analyses for the assessment of people with dementia and mild cognitive (MCI) impairment.

Methods: Three groups of participants (healthy control, Mild Cognitive Impairment and Alzheimer’s disease) in two different Memory Clinics (France and Greece) had to carry out a standardized scenario consisting of directed tasks (single, dual task and vocal tasks) and activities of daily living such as preparing pillbox while being recorded. The performance quality of each participant was manually annotated and assessed based on the amount of successfully carried out tasks. Recorded data was processed by a platform of signal analysis in order to extract parameters detecting activities undertaken by the participant. We developed a classifier based on the extracted features for diagnostic prediction and further autonomy performance prediction. Furthermore, in order to analyse the recorded data from all the sensors, we employed knowledge-driven interpretation techniques based on Semantic Web technologies.

Results: Overall, activities and task performances were detected automatically with high accuracy rates (up to 80%). Further detailed results from the audio, gait and video analyses as well as results from a comparative analyses between the two clinical settings will be presented at the conference.

Conclusions: The results suggest that it is possible to assess people with dementia and MCI autonomy with the help of ICT and in particular, an automatic video monitoring, audio analyses and accelerometers and that the use of such technologies could provide clinicians with diagnostic relevant information and improve assessment in real time decreasing observer biases.

P4.3. You are happy and safe: a discourse analysis of a diagnostic disclosure of dementia

OYEBODE Jan, ZUHURA Muhamed

Background: Retrospective accounts have found that most people with dementia wish to know their diagnosis although many report that diagnostic disclosure was not well managed. Information from real-time recordings has potential to reveal more about how disclosure of the diagnosis is negotiated.

Aims: Our principal aim was to explore the way the meaning of dementia was co-constructed by clients, carers and practitioners in the appointment in which the person was given their diagnosis.

Method: Audio recordings of eight diagnostic feedback sessions, delivered by a range of health professionals, were analysed using discourse analysis, considering how language was used to co-construct meaning, perform social functions, position the ‘actors’ and distribute power.

Findings: Carers, clients and practitioners constructed dementia as largely a memory problem. This frequently caused confusion and at times the professional had to undertake repair work to amend this (mis-) understanding. Professionals sometimes appeared to incorporate clients’ and carers’ perspectives but analysis indicated this was often merely a rhetorical strategy, used to satisfy the client that they were being heard. How and when the diagnosis was given depended on what clients and carers said and how much resistance they showed to accepting the news. Professionals preferred to adopt the identity of deliverer of good news and avoided the identity of bearer of bad news. By positioning themselves as guardians of clients’ rights, those with dementia were sometimes positioned as frail and incapacitated.

Conclusions: Practitioners still find it difficult to give a dementia diagnosis, sometimes leading to confusion and disempowering of those with dementia. Nonetheless, the process can be constructive and provide the individual enough space to co-construct a satisfactory meaning around their diagnosis. Therapists can help widen the subject positions available to people with dementia, to help them understand their diagnoses in a way that leads to positive psychological outcomes.

P4.4. Leveraging volunteers in retirement communities to increase diagnosis of dementia

MORGAN David, BANK Jessica, POILEY Eileen

Less than half of older adults with dementia do not have a formal diagnosis. Screening for possible memory impairment may assist in increasing the rate of diagnosis. In the state of Florida, there are a number of retirement communities where all residents are 55 years or older. The Villages, a Florida community of 100,000 55+ residents has partnered with the University of South Florida to improve community health. One request was to provide free memory screening for the Villagers. To meet this request, we developed a training program to teach retired health care professionals to deliver and score the Montreal Cognitive Assessment (MoCA), a 20-30 minute test of memory and executive function. Volunteer training consists of 3 sessions. Those volunteers who master the process set up appointments to test the memory of community residents, typically testing four residents over 2 hours. A procedures manual for this training was developed so that other organizations may leverage volunteer efforts to increase awareness and diagnosis of dementia. Individuals who score well on the MoCA are advised to return after one year for re-evaluation. Individuals who score poorly (about 20%) are advised to seek more detailed evaluation by medical dmemntia specialists. Individuals opting to learn about clinical research opportunities are entered into a Memory Care Registry. When clinical research opportunities are identified for which theymight qualify, they are contacted with information about the study in the event they wish to participate. This program is being performed in other retirement communities or areas with a high concentration of older adults in Florida. The goal is that older adults should have access to free memory screening and that the number of older adults with dementia lacking a medical diagnosis should decline.

P4.5. Specialist nurses should form part of the post-diagnostic care and support network for living well with dementia

RAHMAN Shibley, SWAFFER Kate, GORDON Peter, MANES Facundo, MARSTERS Lucy Jane

Objectives: There have been numerous concerns that the health and care system in England is too fragmented, and lacks sufficient focus for a person with dementia or caregiver to navigate through the system. This makes it difficult for people to live well with dementia. The aim of this study was to conduct a preliminary online survey into into citizens’ attitudes to what post-diagnostic support in the English jurisdiction could look like.

Methods: 90 respondents completed the online “Surveymonkey” survey, invited from a Twitter account with around 13000 followers. The survey could only be completed once. Participants were invited to be a person who had just received a “timely” diagnosis of dementia in the English jurisdiction.

Results: You were most likely to see your General Practitioner if you were aware of dementia and had noticed memory problems (49%) rather than simply talk to friends and family (33%), but you were likely to take action as soon as possible (92%). You were most likely to wish to have follow up from a neurologist and community psychiatric nurse (39%), with input from a specialist nurse in a multidisciplinary team (74%). However, you would (just) prefer to have a specialist nurse as your ‘care coordinator’ (47%) rather than a “dementia adviser” (34%), but to have a primary caregiver’s input in formulating a personalised care plan (46%). (Respondents further stated that the decision to implement clinical nursing specialists should be based on clinical outcomes (76%).)

Conclusion: The results from this preliminary survey identify the clinical nursing specialist as key stakeholder of future importance in the English jurisdiction, working together with a person living with dementia and the primary caregiver in the post-diagnostic care and support network. This will vastly improve likelihood of living well with dementia.

 

 
 

Last Updated: Monday 28 September 2015

 

 
  • Acknowledgements

    The 25th AE Conference in Ljubljana received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Spominčica gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
  • SCA Global Hygiene
 
 

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