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P11. Post-diagnostic support

Detailed programme and abstracts

P11. Post-diagnostic support (Tuesday 1 Nov., 16.00 - 17.30)

P11.1. Designing an acceptable and useful companion robot for people with dementia and carers in Ireland: the MARIO project

CASEY Dympna, MURPHY Kathy, OSCAR James

Robots have the potential to combat the overwhelming impact of loneliness in people with dementia However companion robots designed for people with dementia need to be acceptable to both end users and carers as a mismatch between needs and the solutions offered by robots are a barrier to acceptance and robot adoption.. The MARIO Horizon2020 project aims to address the difficult challenges of loneliness, isolation and dementia by developing companion robots which are acceptable to end users 

Aim:to identify what people with dementia and carers want from a companion robot and the factors that promote the acceptability and usefulness of same.

Methods:  A mixed methods approach was used.  Firstly we interviewed people with dementia ( n=22) and carers (n=49). Then a survey questionnaire was designed based on the interviews findings and a review of the literature. This survey was emailed to 495 nurse practitioners and garnered 39 responses. Ethical approval was obtained from the University ethics committee.

Findings:Findings from the qualitative data indicate that carers and people with dementia are receptive to having a companion robot. People with dementia felt that the robot could prompt guide and support them in undertaking their daily activities and help them retain their abilities. The quantitative data revealed that in terms of acceptability, human voice, quietness, size of the robot, and the ability for some nonverbal communication were most valued. In terms of usefulness and support, carers prized the robot’s social capacity to interact, assist with home based care, emergency communication, and health monitoring.

The findings provides important information as to how best to design companion robots that are more likely to be acceptable and useful to people with dementia and carers

P11.2. What do people with dementia and their informal caregivers know about advance directives?


Objective: Advance directives aim to support the autonomy of people with dementia. The person without dementia can define how she/he would be treated in the case of dementia. However, what do people with dementia and their relatives know about the possibilities and boundaries of advance directives? This research question was explored by a survey in the European Metropol Region Nürnberg (Germany).

Methods: In face-to-face interviews with open und structured questions, focusing on the possibilities and boundaries of advance directives, we identified the level of knowledge of people with dementia in early stage and their informal caregivers. We asked amongst other what they think about the significance of the advance directive.

Results: The survey included 52 persons with dementia, aged 53 to 92 years, and 51 informal caregivers, aged 31 to 81 years. Both, people with dementia in early stage and their informal caregivers are not always sure how binding the advance directive is. 8 % of persons with dementia are not sure, if the physician is bound to the directive. 13 % of the persons with dementia do not know if the directive could be revoked, however only 4 % of the informal caregivers are not sure. 11 % of the persons with dementia think that the informal caregiver can revoke the advance directive of the patient. 19 % of the persons with dementia do not know if they could make directives especially for the case of dementia.

Conclusion: Our results show that people are not always sure about the possibilities and boundaries of advance directives. More information and enlightenment is necessary to support the ethical idea of advance directives: people’s autonomy in the case of dementia.

The research is funded by: Emerging Fields Initiative (EFI), Friedrich-Alexander-University Erlangen-Nürnberg (FAU), Human Rights in Healthcare.Bavarian State Ministry (StMGP); project “Bavarian Dementia Survey” Conflicts of interest: none

P11.3. “The little dance” – delicate deliveries of dementia diagnoses: findings from the shared study focus groups with doctors

BAILEY Cate, DOOLEY Jemima, MCCABE Rosemarie

Aims: This research explores the views and experiences of doctors delivering diagnoses in memory clinic feedback consultations. The focus groups were conducted as part of the ShareD study which is analysing current practice in diagnosis delivery, communication and shared decision making with people who have dementia and their relatives.

Background: There has been a recent drive to facilitate prompt dementia diagnosis and treatment. Although an established culture of patient-centred care exists, there is little research into experiences of staff engaged in the important task of communicating dementia diagnoses and sharing treatment decisions. Previous studies of feedback consultations found clinicians exhibit anxiety, use mitigating language and spend little time explaining diagnoses before moving to treatment.

Methods: Four focus groups were conducted with 13 psychiatrists and 2 geriatricians in London and Devon. Transcripts were coded line by line using NVIVO. Data were analysed thematically.

Results and Discussion: The resulting codes were organised into 21 categories and 5 overarching themes emerged. The doctors demonstrated a nuanced and thoughtful approach to managing sometimes conflicting agendas, and differing levels of understanding of participants in feedback meetings. They described a recurring tension between honesty and offering hope in the consultations and were conscious of sometimes avoiding discussing prognosis at time of first disclosure. There was a clear wish to provide continuity of care and a sensitive and patient-centred service, which sometimes felt difficult with pressures on existing systems. The concept of a “timely” diagnosis was explored and some concerns expressed about availability of pre-diagnostic counseling.

Conclusions: The findings confirm doctors demonstrate consideration and sensitivity in disclosure of dementia diagnoses and strive to manage the differing needs, expectations and abilities of all participants in feedback consultations. Further analyses will incorporate this data with observations of memory clinic videos and patient interviews to identify best practice.

This is a summary of independent research funded by the National Institute for Health Research (NIHR)’s Research for Patient Benefit Programme (Grant Reference Number PB-PG-1111-26063). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.

P11.4. Efficacy results of a cluster-randomised controlled trial of dementia care management in Germany (DelpHi)

THYRIAN, Jochen René, EICHLER, Tilly, MICHALOWSKY, Bernhard, WUCHERER, Diana, HERTEL, Johannes, KILIMANN, Ingo, DREIER, Adina, TEIPEL, Stefan, HOFFMANN, Wolfgang

Background: In Germany, there is a lack of evidence-based models of healthcare provision for people with dementia (PWD) in primary care. Internationally there is evidence for the efficacy of collaborative care models and within the DelpHi- trial (Dementia - life- and person centered help) it was adapted into the specific context of the German health care system.

The objective is to present the outcomes of the DelpHi-trial regarding its efficacy on health- and dementia related outcomes for PWD in primary care.

Methods: DelpHi is a general physician (GP) -based, cluster-randomized, controlled intervention trial with two arms. A total of n=6.838 patients were screened for dementia in n=125 GP practices, randomized into intervention or control group. N=1.167 patients (17.1%) fulfilled eligibility criteria and written informed consent was obtained from n=634 patients (54.4%). The control arm received “care as usual”, the intervention arm “Dementia Care Management (DCM)”. DCM aims to provide optimum care for PWD. It consists of (a) a comprehensive assessment of the care situation, needs and resources, (b) a computer-assisted development of an individually tailored treatment and care plan (c) a systematic and documented communication with treating GP, (d) support in and monitoring of achieving treatment and care goals. DCM is provided by specifically trained nurses. Design of the study, intervention and qualification have been published and presented at previous AE conferences.

Comprehensive data assessments were conducted at baseline and annual follow-ups. Primary outcome of the intervention: quality of life, neuropsychiatric symptoms, treatment with antidementia drugs, potential inadequate medication and caregiver burden.

Results: The study started 1/2012, recruitment ended 12/2014 and the last 1-year follow-up was finished 3/2016. Preliminary analyses indicate the efficacy of the intervention regarding quality of life, medical treatment and behavioral symptoms. Detailed analyses regarding primary outcomes and variables associated with changes and outcomes will be presented.

P11.5. Live well with dementia: self-management for people living with early stage dementia 


The Live Well with dementia programme was initiated following research findings in 2013, which found that people with dementia have much less access to the benefits of Self-management programmes, compared to other long term conditions.

A gap was highlighted in Alzheimer’s Society service offer for a structured, peer group programme, based on self-management principles. The development of this programme 2013 - 2017 is funded by Lloyds: Live Well Campaign.

The programme aims : to help people living with early stage dementia develop the understanding, skills and practical tools, to empower and support them to take an active role in the management of their health and well-being.

This seven session programme is co-facilitated by trained facilitators. The participants of the programme in development have a vital role as ‘pathfinders’, feedback based on their lived experience of dementia, is directly informing the model.

Learning from the delivery of 5 pilot programmes in 2013 was followed by adaptation to the programme in 2014. Delivery of 20 programmes took place at pathfinder stage September 2015 - March 2016 involving robust internal and external evaluation. Data reports produced in April 2016, will be available to be reported on at this conference

A research team from University of Brighton are conducting the external evaluation:   

‘It is clear that this programme remains at the cutting edge and at the forefront of a very current and developing area of research and interest’. Researcher 2015

Headline: early evidence indicates the exciting, positive value and future potential of this programme for people living with early stage dementia.

P11.6. The quality of integrated dementia care in community-dwelling persons with dementia in two Dutch regions

VASSE Emmelyne, GRAFF Maud

The organization of post-diagnostic support for persons with dementia and their informal carers varies across the Netherlands. In some regions professionals actively work together in dementia care networks while in other regions care is fragmented and not coordinated. The Dutch dementia care standard (2013) describes the key elements of optimal multidisciplinary integrated dementia care (MIDC) on a local level. Among the key elements are support from a casemanager after diagnosis, an individualized care plan including both medical and psychosocial care, availability of different types of respite care and engagement in recreational or social activities. The quality of MIDC in a specific region depends on the extent to which the key elements are implemented.

In 2013 all key elements of optimal MIDC were actively implemented in the region of Walcheren in the Netherlands. An essential part of the implementation process was offering the support of a casemanager to all community-dwelling persons with dementia.

In a cross-sectional, observational study we investigated the quality of MIDC from the perspective of community-dwelling persons with dementia living in Walcheren before and 15 months after the implementation of optimal MIDC. Furthermore, we compared the quality of MIDC in Walcheren (experimental region) with that in an other Dutch region (control region) where not all key elements were present or actively implemented.

We used a set of quality indicators to measure adherence to the key elements of optimal MIDC for about 80 persons with dementia from Walcheren and about 45 persons with dementia from the control region at time of inclusion in the study and at follow-up 15 months later. Data was gathered from patient files at the general practitioner and the casemanager if a person with dementia received support from a casemanager. The results of this study will be presented and discussed at the conference.



Last Updated: Tuesday 10 January 2017


  • Acknowledgements

    The 26th AE Conference in Copenhagen received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimerforeningen gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche