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P1. Diagnosis

Detailed Programme, abstracts and presentations

P1. Diagnosis (Friday, 5 October, 14.00-15.30, Europa 1)

P1.1. Instruments for the early detection of dementia in persons with intellectual developmental disorder

Elisabeth L. Zeilinger, Katharina A.M. Stiehl, Germain Weber

Persons with an intellectual developmental disorder (IDD) are at the same or even greater risk of developing dementia as the general population. Therefore, they should have equal opportunities for a high-quality early assessment. There are well established instruments for the early detection of dementia in the general population, like the MMSE or the CERAD, but these are often not suitable for persons with IDD. These instruments are based on the assumptions of a formerly sound and intact cognitive functioning, which cannot be assumed for persons with IDD, thus making early detection of dementia in the IDD population even harder to achieve. However, early detection is important for early interventions. Existing screening instruments for dementia in persons with IDD differ in various features, making the choice of an instrument more complex. The goal of this study is to find, describe and evaluate instruments for the early detection of dementia in persons with IDD systematically, and to provide a direct comparison of existing tools. This comparison should simplify and facilitate an appropriate choice of an instrument for specific purposes and lead to a more reliable detection of early signs of dementia in persons with IDD. A systematic literature search in five databases was conducted, which yielded 3036 results for persons with IDD. Additionally, a second search yielded 1587 results for persons with Down syndrome. Relevant studies were identified and chosen independently by two researchers using fixed inclusion criteria. All instruments found were coded using a newly designed set of characteristics. First results will be presented and discussed.

P1.2. The person with dementia: The personal impact of diagnosis disclosure.

Gary Mitchell B, Patricia McCollum, Catherine Monaghan 

Introduction: Dementia does not consistently remain patient-centered, with regards to diagnosis disclosure; a plethora of literature supports the notion physicians do not always clearly and directly disclose a diagnosis of dementia to the person with dementia.  Furthermore this stance is often supported by relatives and informal carers. The purpose of this systematic review was two-fold; Theme one: to explore the attitudes of diagnosis disclosure from the person implicated.  Theme two: to explore the person’s experience of being diagnosed with dementia.

Literature Review:There were very sparse findings on attitudes to disclosure from the person with dementia, however a wide number of primary research existed which examined the person’s experience of a diagnosis of dementia.  5 studies were found in relation to theme one and 12 studies (from the past five years) were found in theme two.

Results:  The perceived negative impact of disclosure, i.e. depression/suicidal tendencies, was not as common as background literature suggested.  Many positive outcomes existed as a result of disclosure, i.e. future planning and the ‘relief’ that a recognized disease was the result of symptoms as opposed to ‘old age’.

Discussion:The person with dementia has a right to disclosure in all instances, even if to decline a formal diagnosis.   Through omission of a clear diagnosis, the person is disempowered.  An interesting parallel is drawn with cancer-care which previously the same issue of non-disclosure existed.  Yet this is no longer the case as cancer-care has undergone evolution, whereas dementia has not.  A clear diagnostic framework is absent.  Diagnosis should take place over multiple sessions to facilitate not only coping-strategies, but also for practical reasons, i.e. to allow adequate recall.

P1.3. Early Diagnosis of Dementia in Plymouth, England: The general practitioner’s and carer’s experience

Dr. Mike Sheaff, Mr. Ian Sherriff, Dr. Helen McFarlane, Prof. George Giarchi

In partnership with the Plymouth branch of the Alzheimer’s Society, researchers from Plymouth University’s Dementia Research Team undertook a study to examine the experiences of people in Plymouth with a dementia and their carers in receiving an early diagnosis of dementia including any follow up support, guidance and advice and access to services offered. Thirty in-depth semi-structured interviews were carried out with carers and where possible people with dementia together with nine focus groups conducted in General Practitioner (GP) surgeries that included  GPs as well as other primary care staff and their receptionists to ascertain their views and perceptions of the diagnosis received and support given following that diagnosis. All 44 GP surgeries in Plymouth maintain a register of patients having a diagnosis of dementia. The sample of nine GP surgeries in this research included differing proportions of the patient population as identified on the dementia registers. Key findings around making a diagnosis, involving carers and their families, social support and involvement and community services suggest that both receiving a diagnosis and support in dementia care is inconsistent at best. There were also contrasting experiences for the person with dementia and their carer in acute hospital settings compared to their home/community environment, particularly in the context of developing relationship centred care. Conclusions and recommendations include a wider provision of GP masterclasses, training and support, a coordinated community based service to support the National Health Service dementia care pathway and the establishment of a local Dementia Action Alliance.

P1.4. ALCOVE: Sharing knowledge to enlighten healthcare policies in Europe for people living with dementia and their carers. Emerging findings from Work Package 5: Improving access to early diagnosis of dementia

Dawn Brooker, Simon Evans, Peter Ashley, Jenny La Fontaine, Jennifer Bray and Karim Saad

The ALzheimer’s COoperative Valuation in Europe (ALCOVE) project is a Joint Action co-financed by the European Commission and comprised of 30 partners from 19 EU Member States. ALCOVE aims to improve knowledge and promote the exchange of information on dementia and its consequences to preserve health, quality of life, autonomy, and dignity of people living with dementia and their carers in EU Member States. ALCOVE’s main objectives are: 1) To establish a European network of healthcare institutions; 2) to inform and advise policymakers, healthcare professionals, caregivers, and citizens through convergent recommendations; 3) to reduce the risks associated with psychotropic drug use, particularly antipsychotics.

ALCOVE aims to improve data on dementia prevalence; access to early dementia diagnosis; care for those living with dementia, especially those with behavioural and psychological symptoms; and the rights of people with dementia, particularly with respect to advance declarations of will.

This presentation reports on ALCOVE work package 5, which is being led by the UK and focuses on early diagnosis and intervention in dementia.  We present findings from a questionnaire survey of 27 EU countries along with a review of the literature on national systems for the diagnosis of dementia in order to access to a common definition with associated operational criteria. The presentation concludes by outlining draft recommendations for improving early diagnosis of dementia, both in community and nursing home settings.

Additional Project Partners

  • Dr Armelle Leperre – Desplanques, Haute Autorité de Santé, France;
  • Tomás López-Peña Ordoñez, Institudo de Salud Carlos III, Spain;
  • Pr Michal Novak, Slovenska Akademia Vied – Neuroimmunologicky Ustav, Slovakia;
  • Pr Nicola Vanacore, Istituto Superiore di Sanita, Italy;
  • Jerry Bird Department of Health, UK;
  • Dr Helka Hosia-Randel, National Institute of Health and Welfare, Finland;
  • Bénédicte Gombault, King Baudoin Fundation, Belgium;
  • Pr Anders Wimo, Karolinska Institute, Sweden

P1.5. Diagnostic Disclosure: evaluation of a communication model in dementia care.

Els Derksen, Maud Graff, Marcel Olde Rikkert, Myrra Vernooij-Dassen

Background/objective: Considering the importance of adequate diagnostic disclosure, a disclosure communication model has been developed for the disclosure meeting with the medical doctor and a counselling meeting with a nurse or nurse specialist. This model is based on the principles of ‘breaking bad news’ applied to the specific situation of telling the patient and his nearest the diagnosis of dementia. The disclosure meeting with the physician contains of five phases. After an short introduction (phase 1) to help the person with dementia focus on the reason for the meeting, the diagnosis will be shared (phase 2). After this actual disclosure there is space for expressing emotions (phase 3) Further explanations about test results (phase 4) and discussion on the continuity of care (phase 5) completed the disclosure meeting. In the counselling meeting with nurse specialist attention will be paid to the way the patient and the caregiver process the diagnosis. Also care advices will be given after identification of the needs for care and support.

Training: The disclosure model will become part of standard practice within the memory clinic in the Alzheimer Centre in Nijmegen. The implementation involves two sessions for both physicians and nurse specialists. Additional, the nurse specialists are instructed about the content of the counselling meeting. Both received feedback on their performance by observation or by videotaping a real-life situation (after agreement by patient and relative).

Study design: We studied the use of this model in a sequential design in which the control group measurements preceded the intervention group measurements following the introduction of the communication model and staff training. The primary outcomes were the patient related scores on the Neuropsychiatric Inventory(NPI) and the caregivers’ scores on the Sense of Competence Questionnaire (SCQ). Patient and caregiver outcomes were measured at baseline and at the 3-month follow-up.

The use of the disclosure model did not affect the patient outcomes, but the caregiver sense of competence diminished. This study stresses the importance of disclosure as a process in which the needs for care raised by the diagnosis should be addressed as much as the diagnostic disclosure itself.

Discussion: We presumed that for patients with dementia it is very important to hold on to the order of the phases in the disclosure meeting and to take enough time for each phase. This model aims to improve the diagnostic disclosure in dementia. Using this disclosure model offers the opportunity to systematically pay attention to the disclosure procedure, while using accepted principles of bad news communication. After the disclosure at the memory clinic the GP is advised to discuss the diagnosis with the patient and his of her caregiver.

P1.6. Dementia: Diagnosis, disclosure and prescribing practices among primary care physicians in Malta

Charles Scerri

Recent studies have shown that 1.1% of the Maltese population has dementia, a figure that is projected to double in the next 30 years. This, in conjunction with a demographic shift favouring a progresssive increase in the elderly population, will invariably put greater demands on local health care services with considerable and unavoidable socio-economic consequences. Moreover, there will be a growing burden on family members who, in the majority of cases, provide informal care for these individuals at home. Therefore, proper and timely diagnosis, especially in a primary setting, would significantly improve the clinical outcomes, ameliorate caregiver burden and decrease early institutionalization. In order to provide a comprehensive picture of primary care management of dementia in Malta, a questionnaire evaluating patterns in diagnosing, disclosing and treatment of individuals with dementia was distributed among local primary care practitioners (PCP). The results (n=131) showed that PCP need more training in diagnosing the various forms of dementia. Loss of memory and behavioural deficits were the symptoms which made PCP most likely suspect dementia. A considerable number of PCP still adopt a wait-and-observe approach to diagnosis with close follow-up occurring every two to four months. Maltese PCP routinely disclosing dementia diagnosis amounted to a third of the respondents with only a fifth believing this was of any benefit. Significant delays in institutionalization and maintenance of functional abilities were the main reasons for prescribing anti-dementia medication. The use of antipsychotics was found to be low and non-pharmacological alternatives unpopular. Considering that PCP are among the first healthcare professionals that come into direct contact with individuals with dementia and their carers and relatives, this data shows a need of increasing knowledge on dementia within the primary setting, and be valuable in the drafting of educational training programmes that would invariably lead to enhancing high quality dementia care in the community



Last Updated: Wednesday 14 November 2012