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PO3. Memory clinics and centres

Detailed programme and abstracts

PO3.2. Public network of day centers specialized in Alzheimer's and other neurodegenerative dementias

RODRÍGUEZ BERNÁRDEZ Juan Carlos, HERMIDA PORTO Javier

Federación Alzheimer Galicia, Santiago de Compostela, Spain

Goals:

  • Strengthen the existence of specialized quality centers that provide adequate care for people with dementia
  • Keep users in their social and family environment, avoiding their institutionalization
  • Facilitate the reconciliation of the work and personal life of the caregivers
  • Provide the integrated centers in the network with permanent access to information, allowing the generation of lines of research that contribute to a better knowledge of the disease and favoring the adoption of therapeutic measures that are effective
  • Provide the entire family network with a communication channel that allows reliable and up-to-date information on existing resources for the treatment of dementias
  • Encourage the development of social support networks.

Methodology: The Federation Azhéimer Galicia, together with its federated associations and in collaboration with the Xunta de Galicia began in 2008 the launching of a Galician network of public day care centers for people with Alzheimer's and other neurodegenerative dementias.

They provide comprehensive care to users in their basic needs, social and psychological, ensuring the effective application of therapeutic measures that are effective in each case.

Likewise, support is offered to informal caregivers through social and psychological care, counseling on cognitive stimulation, adaptation of the environment and technical aids that are needed, in order to improve the quality of care. care they provide, reduce the workload and improve the quality of life of the families who care.

Results: Creation of 7 public day centers distributed throughout Galicia with more than 300 places for people with dementia.

Conclusions. These services make Galicia the only Spanish autonomous community that offers a network of these characteristics and that is managed by associations.

PO3.3. Development of an interactive visualization tool of neuropsychological test results

GRUTERS Angélique1, RAMAKERS Inez2, VERHEY Frans2, KESSELS Roy3, DE VUGT Marjolein4

1Maastricht University, Alzheimer Center Limburg, Maastricht, Netherlands, 2Department of Psychiatry and Neuropsychology, School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University, Maastricht, Netherlands, 3Donders Institute for Brain, Cognition and Behaviour, Radboud University Nijmegen, Nijmegen, Netherlands. Department of Medical Psychology & Radboud UMC Alzheimer Center, Radboud UMC, Nijmegen, Netherlands 4Department of Psychiatry and Neuropsychology, School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University, Maastricht, Netherlands

Objectives: Due to the rising prevalence of dementia, the question whether cognitive complaints are related to normal aging or an early sign of a neurodegenerative disease will become increasingly important. A neuropsychological assessment (NPA) is often used in the timely diagnosis of dementia. However, psychologists experience that it can be a challenge to adequately explain neuropsychological findings to patients. Offering neuropsychological feedback has been shown to improve quality of life and social adjustment. The aim of this study was to develop a web-based visualization tool of neuropsychological performances to support professional-patient communication.  

Methods: During the ‘Innovations in Neuropsychological assessment in diagnostics of Dementia’ (INPAD) project a visual tool was developed using an iterative stepwise approach (six phases) to determine quality, usability, and feasibility. In each phase, feedback was collected from patients and family members (focus groups, client panel), or psychologists (think-aloud sessions) to adapt and optimize the tool.

Results: One of the major themes emerging from the focus groups was low information retention during the visit to the memory clinic. Visual aids in lay-men language would have helped during their consultation. The think-aloud sessions showed that psychologists considered it valuable to visualize NPA findings to support patient communication and that the usability of the visual tool was high. Furthermore, feedback during the focus groups and think-aloud sessions on the visual tool was given (e.g., used norms and tests) which was adapted in the prototype.

Conclusion: Feedback from different viewpoints (patient, family member, psychologists) added important information to optimize the prototype of the visual tool. Overall, a visual display of the cognitive profile with insights into daily life was considered beneficial to clinical practice by patients, family members and clinical experts. Currently, we are carrying out a pilot study (phase 5) in three Dutch hospitals, to investigate feasibility in clinical practice.

PO3.4. Experience with neuropsychological assessment and diagnostic disclosure in memory clinic visitors and their family members: A qualitative study

GRUTERS Angélique1, CHRISTIE Hannah2, RAMAKERS Inez2, VERHEY Frans2, KESSELS Roy3, DE VUGT Marjolein4

1Maastricht University, Alzheimer Center Limburg, Maastricht, Netherlands, 2Department of Psychiatry and Neuropsychology, School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University, Maastricht, Netherlands 3Donders Institute for Brain, Cognition and Behaviour, Radboud University, Nijmegen, Netherlands; Department of Medical Psychology & Radboudumc Alzheimer Center, Radboud UMC, Nijmegen, Netherlands, 4Department of Psychiatry and Neuropsychology, School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University, Maastricht, Netherlands

Objective: One of the most often used assessment tools in the early diagnostics of dementia is a neuropsychological assessment (NPA). An NPA offers insight into cognitive strengths and weakness, and has been shown to be related to improved diagnostic accuracy and treatment planning. There is increasing attention for exploration of patient experiences in mental health care. However, little research has been done with regards to the experience of both memory clinic visitors (MC) and their family members with an NPA. The aim of this study was to gain insight into the perspective of MC visitors and their family members with an NPA and the diagnostic disclosure.

Method: Participants (with or without cognitive impairment) and their family members referred to three Dutch MCs for an NPA were recruited. Four focus groups with 18 MC visitors and 17 family members (11 dyads) were analyzed using both inductive and deductive content analysis.

Results: Three themes emerged from the focus groups: uncertainty, the early diagnostic paradox, and knowledge utilization. Uncertainty was experienced during the whole diagnostic trajectory. The early diagnostic paradox refers to the coexistence of negative emotions, such as confrontation with neuropsychological deficits, feeling of frustration or exhaustion during the assessment, and the experience of positive emotions, such as relief due to certainty about the diagnosis. It was also found that there was a low retention of medical information and that this further increased the levels of uncertainty.

Conclusion: Uncertainty can be reduced by using clear communication, limiting interruptions during an NPA, and paying attention to infrastructural details. Low information retention could be improved by visual aids. Finally, visitors appreciated being provided with neuropsychological feedback on the cognitive strengths and weaknesses and with guidance on how to manage this in their daily lives.

PO3.5. Is an individually designed memory aids intervention more beneficial than commonly available advice? (DESCANT)

REDDY Leena1-2, MCCOY shani1-3

1Berkshire Healthcare Foundation Trust, Reading, United Kingdom, 2Member of the Royal College of Psychiatrists, Reading, United Kingdom, 3British Psychological Society, University of Reading, Reading, United Kingdom

People living with dementia and their carers are often guided to use memory aids as part of the advice related to living well with dementia. However, the efficacy of memory aids has not been properly evaluated nor does the advice typically address the particular symptoms and / or goals of the individual.

DESCANT is a UK based study developed by Manchester University, conducted over six months within six NHS mental health trusts. As the Principle Investigator and Study Co-ordinator of Berkshire Healthcare Foundation Trust, we will be presenting this study in cooperation with the University of Manchester team.

The study is a pragmatic, randomised, controlled trial with the aim of evaluating both the efficacy and cost effectiveness of a personalised intervention (delivered by a Dementia Support Practitioner) in the use of a variety of memory aids relative to ‘treatment as usual’.

20 participants diagnosed with mild to moderate dementia were recruited at each site. Participants were randomised into an experimental group (receiving a personalised intervention by a dementia support practitioner) and ‘treatment as usual’ group (control). The memory aids consisted of a number of readily available items incl. day / date clocks, whiteboards, and diaries. These were chosen in accordance with the Ministerial Advisory Group on Dementia Research (MAGDR) as being cheap, realistic and scalable. The primary outcome measure is the Bristol Activities of Daily Living (BADLS) with secondary measures being the S-MMSE and EQ-5D-5L. The measures are taken at baseline, three, and six months’ post intervention.  

The study is currently in the post intervention data analysis stage but we hope to provide some preliminary trend analysis in time for the conference. However, participants already report that the intervention is well received.

PO3.6. Bridging the diagnosis gap in Young Onset Dementia for improved diagnostic coding, service planning and commissioning

REDDY Leena1, HUSSEY Jacqui2

1Berkshire Healthcare Foundation Trust NHS, Reading, United Kingdom, 2Consultant Psychiatrist, Reading, United Kingdom

In 2014, Alzheimer’s Society published updated prevalence rates predicting that there should be at least 42,325 people living with Young Onset Dementia (YOD) in the UK. Information on actual numbers of people with dementia are entered by GP practices on to the Quality Outcomes Framework (QOF) dementia register, using a coding system for different dementia subtypes called Read codes. The QOF register helps identify the number of people with a diagnosis of dementia and the numbers whose care is reviewed each year, as well as provides the numbers to inform service planning and commissioning.

Using the Wokingham Older Adult Mental Health Service, Berkshire, UK as an example, August 2018 figures illustrate that the prevalence of people who received a YOD diagnosis on the QOF register is significantly less than the estimated prevalence, hence a diagnosis gap.

There are a number of possible factors to explain low diagnosis rates in YOD such as the tendency to present with non-cognitive symptoms, to have rarer forms of dementia making it more difficult for GPs to identify it, or the frequent absence of a co-ordinated referral or care pathway. Delays in diagnosis can therefore result, along with a lack of age- appropriate and effective post-diagnostic support services including psycho-social interventions. There is also a coding problem, which arises because GP Read codes only have a code for young onset Alzheimer’s disease but no other subtypes of dementia.

Earlier recognition through better public and GP education, clear referral and diagnostic pathways, and revising the coding of subtypes of young onset dementia to accurately record numbers could help us improve time to diagnosis and ensure people living with YOD and their families receive the right services at the right time.

PO3.7. Establish rapid ways for dementia diagnosis and increase the accuracy of diagnosis

LIN Shao-Ping1, LIU Chien-Liang1, HSU Ya-Chuan2

1Taipei City Hospital, Taipei City, Taiwan, Province of China, 2Taipei City,Taiwan, Province of China

For responding to the special situation of suspected demented sufferers and relieving burdens of accompanying for those family, the Taipei City United Hospital established three rapid diagnostic modes for dementia. Quick diagnosis: coordinate the radiology department and psychologist, accompanied by volunteers trained in dementia, all the dementia-related examinations can be completed in half a day, reducing the frequency of cases and family members returning to the hospital, simplifying the diagnosis process, which serving 25 cases in 2018. Home diagnosis: the medical team visit the suspected demented sufferers, who were difficult to hospital for dementia diagnosis, or who were no insight for those disease, to achieve attentive dementia diagnosis services, which serving 16 cases in 2018. Hospitalization diagnosis: suspected demented sufferers who living alone or with emotional behavior, diagnosed by hospitalization. Via hospitalization, it improved symptoms and home life.

PO3.8. Taipei City Hospital integrated dementia care center care model

LIN Shao-Ping1, LIU Chien-Liang1, HSU Ya-Chuan2

1Taipei City Hospital, Taipei City, Taiwan, Province of China, 2Taipei City, Taiwan, Province of China

The Taipei City Hospital has established a family centered dementia care model to take care of dementia cases and families in the Taipei city area. The model is based on a community-initiated comprehensive care service for dementia. Assist the community to suspect dementia cases, complete the diagnosis of dementia within half a year, providing medical care services related to dementia families through a case management model, and provide appropriate health education and resource referral for the dementia caregiver with families. Providing family support services for family members with dementia experience different stages of dementia care needs. When people with dementia need medical service, we connect the medical team to provide appropriate acute illness care, due to we hope each dementia family receive appropriate care, and reduces the burden on the dementia caregiver and family.  This reduces the burden on the caregiver. In 2018, the number of intelligent case management services was 820, and the total number of newly diagnosed dementias was 379. In 2018, the number of dementia management services was 820, and the number of newly diagnosed dementia was 379.

PO3.9. The underrecognition of neuropsychiatric symptoms in individuals with Alzheimer’s disease at the memory clinic

EIKELBOOM Willem1, PAN Michel1, COESMANS Michiel2, VAN DEN BERG Esther1, SINGLETON Ellen3, MATTACE RASO Francesco4, VAN SWIETEN John1, OSSENKOPPELE Rik3, PAPMA Janne1

1Department of Neurology, Erasmus MC, University Medical Center, Rotterdam, Netherlands, 2Department of Psychiatry, Erasmus MC, University Medical Center, Rotterdam, Netherlands, 3Alzheimer Center and Department of Neurology, Amsterdam University Medical Centers, Amsterdam, Netherlands, 4Department of Geriatric Medicine, Erasmus MC, University Medical Center, Rotterdam, Netherlands

Background: Neuropsychiatric symptoms (NPS) are nearly universal in persons with Alzheimer’s disease (AD) and are associated with disadvantageous clinical outcomes. However, clinicians and researchers worldwide have suggested that NPS are currently underrecognized in the diagnostic phase. Insights in this potential underrecognition will improve the early recognition of NPS, which is imperative for early and appropriate treatment.

Methods: We investigated the electronic medical charts written by neurologists and geriatricians during the diagnostic phase of 114 persons diagnosed with AD dementia and 44 individuals with mild cognitive impairment due to AD at the memory clinic of the Erasmus MC Rotterdam, the Netherlands. Prevalence of NPS in the charts was compared with the Neuropsychiatric Inventory-Questionnaire (NPI-Q) assessments filled in by caregivers to make statements about the underrecognition of NPS in AD. Next, binary logistic regressions were performed to examine predictors of underrecognition.

Results: Only 42% (274/651) of all the NPS reported on the NPI-Q were mentioned in the medical charts. There was a substantial heterogeneity in the underrecognition of NPS across the different symptoms, with agreement between NPI-Q and the chart ranging from 65% (49/76) for apathy to 3% (7/41) for euphoria. In only 15% (98/651) of the cases were NPS mentioned in the charts under ‘patient history’ also mentioned under ‘treatment advice’, suggesting that NPS are often undertreated even when they are being recognized. Underrecognition of NPS was significantly higher in female patients (OR=0.30), patients with early-onset AD (ORs=0.14-0.21), in less severe and prevalent NPS (OR=0.04), and in those who visited the clinic in the past (ORs=0.74-0.76).

Conclusions: Our results support the notion that NPS are currently underrecognized and undertreated in AD in the memory clinic. These analyses will be extended in future analyses using multicenter medical charts of > 3000 individuals with AD that will be studied using natural language processing.

PO3.10. Detection and management of neuropsychiatric symptoms in different dementia care settings in the Netherlands

EIKELBOOM Willem1, BAKKER Christian2, VAN DEN BERG Esther1, APPELHOF Britt2, VAN DUINEN-VAN DEN IJSSEL Jeannette2, COESMANS Michiel3, SINGLETON Ellen4, RIK Ossenkoppele4, KOOPMANS Raymond2, PAPMA Janne1

1Department of Neurology, Erasmus MC, University Medical Center, Rotterdam, Netherlands, 2Department of Primary and Community Care, Radboud UMC, Nijmegen, Netherlands, 3Department of Psychiatry, Erasmus MC, University Medical Center, Rotterdam, Netherlands, 4Alzheimer Center and Department of Neurology, Amsterdam University Medical Centers, Amsterdam, Netherlands

Background: Neuropsychiatric symptoms (NPS) include behavioral manifestations such as depression, apathy, agitation, and psychosis and affect nearly all persons with dementia during the course of their disease. NPS reduce quality of life, and are related to high levels of caregiver burden and a more progressive course of the dementia. However, NPS are currently underrecognized and undertreated in both memory clinics and nursing homes. Based on the outcomes of the BEAT-IT and BEYOND-II studies, we will provide an overview of the current state of NPS management and formulate recommendations on how to improve early detection and structured management of NPS beneficial for dementia care in Europe.

Methods: To study the (under)recognition of NPS in the memory clinic, the BEAT-IT study compared the prevalence of NPS in medical charts of individuals with (preclinical)dementia with their Neuropsychiatric Inventory-Questionnaire (NPI-Q) assessment. The BEYOND-II study evaluated a care program developed to structure the management of NPS in the nursing home, whereas a similar method is currently being investigated in the outpatient setting by the BEAT-IT study.

Results: Preliminary results of the BEAT-IT study show that only 42% (ranging 64.5-2.6% for individual NPS) of all the NPS reported on the NPI-Q were also mentioned in the medical chart of patients visiting the memory clinic. Furthermore, NPS were rarely treated even when detected by clinicians. The BEYOND-II study found no differences on primary outcomes between the intervention condition and care as usual. Yet, the process evaluation showed high levels of satisfaction with the intervention among nurses and revealed which factors affected implementation.

Conclusions: The BEAT-IT and BEYOND-II studies aim to enhance awareness among clinicians to recognize NPS in dementia and stress the importance of a non-pharmacological, multidisciplinary, and structured approach to treat NPS. We will provide recommendations on how to implement structured management programs into dementia care.

PO3.11. The “KARELLEION” integrated Alzheimer’s and related disorders unit: Structure, functions and goals

ZACHARIADIS Andreas, CHRYSIKAKOU Iliana, EFTHYMIOPOULOU Catherine

Karelleion Integrated Alzheimer and related disorders Unit, of the “Apostoli” charitable organization, of the Holy Archdiocese of Athens, Greece

The “Karelleion” Integrated Alzheimer's and Related Disorders Unit, which is a part of the “Apostoli” charitable organization, of the Holy Archdiocese of Athens, is providing specialized high-level services, to patients with Alzheimer’s and related disorders.

The unit consists of, an inpatient department, with a capacity to accommodate 15 patients on a permanent basis and also an extra capacity to simultaneously accommodate 5 more patients, on a short-term basis, aiming to relieving their families for a brief period of time, from the burden of their care. It also comprises a day center, to which patients with dementia may participate. Patients, caregivers, as well as healthy elderly individuals, may also receive specialized information, consultation as well as education, as far as dementia and preventive measures are concerned. And last but not least, we have a memory clinic, which is a specialist outpatient service, into which anyone interested may be examined, as far as their cognitive functions are concerned, by a psychiatrist and a psychologist. If need be, they can also be followed-up by the psychiatrist and receive prescriptions for medication or referrals for further diagnostic control.

The services we provide are oriented, in such a way, so as to provide to the person with dementia, the best possible level of specialized medical and nursing care, as well as specialized therapies like occupational therapy, physiotherapy and music therapy. Counselling and psychological support to caregivers, is also provided.

At the “Karelleion” we believe that life-long education is an imperative and in this context we have launched informative campaigns about Alzheimer’s nationwide, and perform memory tests to individuals, throughout the country. We also carry out psychoeducative seminars on dementia and we participate in various congresses and conferences. In addition to the previous, the unit also provides practice to psychology and physiotherapy students.

 

 
 

Last Updated: Thursday 26 September 2019

 

 
  • Acknowledgements

    The 29th AE Conference in The Hague received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimer Nederlands gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
 
 

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