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Oral poster presentations

Detailed programme, abstracts and presentations

OP1.1. Setting up Kinect bowling groups for people with dementia

ASTELL Arlene1,2, DOVE Erica2

1University of Toronto, Toronto, Canada, 2Ontario Shores Centre for Mental Health Sciences, Whitby, Canada

Motion-based technology such as Xbox Kinect, can provide cognitive, physical and social benefits for people with dementia. However, information is needed about the best ways to introduce, teach and support people with dementia to use this type of technology. and for organisaitons to implement it in their care settings. This study set out to examine the implementation of Xbox Kinect bowling as a group activity for people with dementia in day care programs. The study was conducted in three community-based adult day programs for people with dementia and other age-related challenges. Participants with dementia (N = 38; mean age = 75.4 years; mean MoCA =12.43) were invited to play Kinect bowling twice a week (1 hour per session) for 10 weeks (i.e. 20 sessions). Data were collected using two video cameras (front and back views) to capture the freqeuncy and types of assistance provided to participants, the number of bowling turns completed independently, and the duration of participants’ bowling turns. Analysis of the video recording using behavioral coding software is looking at number of prompts, independent turns and turn duration, which are compared pre- and post, using paired t-tests. Pre- and post analysis of the first completed group (n=11) revealed a significant decrease in the number of assistive prompts provided per turn (p<.01), a significant increase in the number of independent bowling turns (p<.007) and a significant decrease in turn duration (p<.01), confirming that participants learned to use the Xbox Kinect. Analyses of the second and third sites are currently underway to increase the generalizability of the findings. This study demonstrates that people with dementia can successfully learn to use motion-based technology. The activity proved so popular that all three day programs have implemented Kinect bowling as a twice weekly group activity in their regular schedule.

OP1.2. CIRCA groups: technology-assisted cognitive stimulation

ASTELL Arlene1, SMITH Sarah2, POTTER Stephen2, PRESTON-JONES Emily2, PRESTON-JONES Emily2

1Ontario Shores & Univerity of Toronto, Toronto, Canada, 2University of Sheffield, Sheffield, United Kingdom

CIRCA (Computer Interactive Reminiscence and Conversation Aid) is an interactive, multimedia system to support conversation between people living with dementia and care partners. The potential of CIRCA as an engaging group-based activity in day and residential care that could improve both wellbeing and cognition has not been examined. The present study, undertaken as part of the H2020 IN-LIFE project, examined the impact of participation in a CIRCA group activity on the cognitive function and quality of life of people with dementia. One hundred and sixty-one people with dementia living in the UK, participated in small groups in an 8-session group activity using CIRCA.  Cognition, quality of life and general health were assessed pre-, post- and three-months later. There was a significant improvement in cognition (p<.05) and quality of life (p<.05) at the end of the CIRCA group intervention, which was further improved at three-month follow-up - cognition (p<.005) and quality of lfie (p<.005). The improvements in cognition and quality of life correspond with those reported for Cognitive Stimualtion Therapy, the only psychosocial intervention approved by NICE, which match those found in currently available drugs for dementia. These findings confirm the potential of CIRCA as a group based activity that improves cognition and quality of life of people with dementia. In additon, CIRCA has a database that can be populated with different cultural and language contents for different user groups and is currently being used in the Netherlands, Spain and Sweden as well as the UK.

OP1.3. Benefits and Harms of Z-drugs for Sleep Disturbance in People Living with Dementia

RICHARDSON Kathryn1, FOX Chris1, LOKE Yoon1, SAVVA George1, HOWARD Robert2, BOYD Penelope1, ALDUS Clare1, MAIDMENT Ian1, STEEL Nicholas1, ARTHUR Antony1, BALLARD Clive3

1University of East Anglia, Norwich, United Kingdom, 2University College London, London, United Kingdom, 3University of Exeter, Exeter, United Kingdom

Background: Approximately 60% of people with dementia (PwD) experience sleep disturbance including insomnia and excessive daytime sleeping. Hypnotic Z-drugs (zolpidem, zopiclone and zaleplon) are common insomnia treatments, but can cause adverse events in the elderly e.g. falls and daytime cognitive impairment which might be particularly harmful for PwD. However, the safety and efficacy of Z-drugs in PwD has not been fully evaluated.  Given the importance of providing respite from sleep disturbance for PwD and carers, it is essential we understand the benefits and harms of Z-drugs.

Methods: The Z-drug Evaluation in Dementia study (HTA 14/221/02, reporting June 2018) used existing data to examine the association between Z-drugs and adverse events, cognitive function, functional ability and quality of life in PwD. We utilised (i) the UK Clinical Practice Research Datalink (CPRD; data routinely recorded by GPs), and (ii) data from three clinical studies of PwD.  

Results: The CPRD analysis includes 4,603 PwD with sleep disturbance and 2,952 prescribed Z-drugs with 2-year follow-up. New use of Z-drugs was associated with a greater risk of fractures (hazard ratio=1.47, 95% confidence interval 1.10-1.97), with risk increasing with greater doses (p=0.008). Increased risks were also observed for hip fractures and mortality, but not for falls, infections, stroke, or venous thromboembolism. The clinical study analyses include 3,057 PwD with 374 using Z-drugs with up to 11-year follow-up.  We will present findings on the effects of Z-drug use on changes in cognition, function, and patient quality of life.

Conclusions: We observed a dose dependent increase in fracture risk with Z-drug use in PwD. In PwD with sleep disturbance, evidence based non-pharmacological alternatives should be considered given the potentially devastating impact of fractures in PwD (e.g. decreased mobility, increased dependency, and worsening dementia). Where Z-drugs are prescribed, patients should be monitored and falls prevention strategies put in place.

OP1.4. Shifting gears versus sudden stops:  Consultations about driving for patients with cognitive impairment

FOLEY Tony1, SINNOTT Carol2, LINDA Horgan1, CORMAC Sheehan1, MC LOUGHLIN Kathleen1, BRADLEY Colin1

1University College Cork, Cork, Ireland, 2University of Cambridge, Cambridge, United Kingdom

Background: Clinical decisions on a person’s fitness to drive (FtD) can have broad implications for individual functioning and well-being, family interaction, health care, transportation, and public safety. General Practitioners (GPs) find consultations on FtD in people with cognitive impairment particularly difficult, not least because of their potential to damage the physician-patient relationship. In this study, we explore experiences from both sides of the FtD consultation in order to understand how the negative impacts associated with these difficult consultations may be lessened.

Methods: Individual qualitative interviews were conducted with GPs, patients and carers. Chart-stimulated recall, an interviewing technique that uses a medical chart to stimulate a physician’s recall of a case was used in GP interviews. GPs were sampled by length of time qualified, practice location and practice size. All interviews were audio-recorded and transcribed in full. Interview data were double coded by the research team using a thematic approach.

Results: Twelve GPs, five patients with cognitive impairment and one carer were interviewed. Data showed that FtD arose for discussion in two ways: introduced by GPs in an effort to proactively prepare patients for future driving cessation, or introduced by patients in the acute setting of needing a medical report for an expiring driving license. GPs reported numerous strategies to lessen bad feeling within the consultation. Despite these efforts, patients called for greater clarity of plan and empathy from GPs for the impact posed by these consultations and the threat of driving cessation.

Discussion: GPs used their longitudinal relationship with cognitively impaired patients to reduce the potential for conflict in consultations on FtD. These efforts could be augmented by explicit planning and empathy for those patients who are facing driving cessation as the outcome of these consultations.

OP1.5. Caregivers’ burden and use of care services: The Bavarian Dementia Survey (BayDem)

KARRER Linda1, NICKEL Franziska1, DIETZEL Nikolas1, HESS Manuela1, GRÄßEL Elmar2, KOLOMINSKY-RABAS1, L.Peter1

1Friedrich-Alexander-University of Erlangen-Nürnberg, Erlangen, Germany, 2University Hospital Erlangen, Erlangen, Germany

Background: There are about 1.6 million people with dementia (PwD) living in Germany. Most of them receive care by their relatives, who experience increased burden. Particular needs of this group may be met by the utilization of care services. This analysis investigates the burden of caregivers and the use of services such as „outpatient care”, “day care”, “household help”, “food delivery” and “care assistance”.

Methods: BayDem is a multi-centre, longitudinal study at three different sites in Bavaria, Germany. Participants are PwD (according to ICD-10) and their informal caregivers. Data was collected by standardized face-to-face interviews using well-designed instruments (RUD, BSFC-s).

Results: In total, 236 family caregiver of PwD were considered 6 months after the first interview. 32% (n=76) reported no or a low level, 39% a moderate (n=91) and 29% a high (n=69) level of burden of care.

Concerning the utilization of care services, 33% (n=78) make use of “outpatient care”. Support in terms of “household help” receive 17% (n=40), “food delivery” is used by 7% (n=16) of the respondents. “Care assistance” for PwD task 10% (n=24), 14% (n=32) of the PwD visit a “day care”.

Conclusion: Although family caregivers perceive a great burden of care, the use of supportive care services is low. Besides financial reasons it is possible that certain services are not offered on site or don´t meet the caregivers’ needs. Therefore, dementia strategies should focus more on innovative health service delivery models tailored to the individual needs of PwD and their family caregivers.

Funding notice: The research was initiated by the Bavarian State Parliament and is funded by the Bavarian Ministry for Health and Care.

OP1.6. Developing a best practice model for services managing crises in people with dementia: the AQUEDUCT study

STANYON Miriam, YATES Jennifer, COLESTON-SHIELDS Donna Maria, ORRELL Martin, STREATER Amy, TRIGG Emma

University of Nottingham, Nottingham, United Kingdom

Background: In England there are teams that seek to manage mental health crises for people with dementia in their own home, preventing admission to hospital or residential care. A survey and previous research evidence revealed these services to be highly heterogeneous in name, set-up and model. The aim of Acheiving QUality and Effectiveness in Dementia Using Crisis Teams (AQUEDUCT) work package 1 was to develop a best practice model for teams managing crisis in people with dementia (TMCDs) in England.

Methods: A best practice model was developed by establishing the experience of current practice through interviews with TMCD staff, people with dementia and carers of people with dementia. Views on what is thought to be best practice were also gathered through focus groups with people with dementia, carers of people with dementia, TMCD staff members and staff members from other services regularly interfacing with TMCDs.  These groups were co-facilitated by lay carers of people with dementia. A consensus process was used to refine the qualitative work into a best practice model involving stakeholder consultation groups and a consensus conference.

Results: Thematic analysis of qualitative data resulted in 168 best practice statements, the stakeholder consultation group refined the statement list to 90 items and the consensus workshop refined further to 50 best practice statements.  These consisted of the following topics: service remit, rapid assessment and intervention, and resources.

Discussion:  Despite the heterogeneous nature of TMCDs, it was possible to define best practice in teams that seek to manage mental health crises in the dementia population. Inviting carers of people with dementia to co-facilitate the focus groups lent a richness to the data collected. This model is being used to develop a fidelity measure and resource kit whereby teams can evaluate and improve their service in line with the best practice model.

OP1.7. Positive aspects of relationship changes between a parent with dementia and their caregiving child.

SMITS Carolien1, VAN DE RUITENBEEK Willeke2, HAFSTEINDÓTTIR Thóra B.3

1Windesheim, Zwolle, Netherlands, 2Bilthoven, Netherlands, 3Utrecht, Netherlands

Background: The number of people with dementia is increasing. Most people with dementia in the Netherlands receive informal care (e.g. from their child). Research indicates that the relationship between a person with dementia and their child changes. A positive parent-child relationship may be a protective factor for well-being for both parent and child. The present study aims to explore the positive aspects of changing relationships between informal caregivers and their parents with dementia, as experienced by the caregivers. Methods: The study has a qualitative design with a descriptive phenomenological approach. Data were gathered through 15 semi-structured interviews with sons and daughters of parents with Alzheimer’s disease or vascular dementia. Colaizzi’s method was used for analysis. 
 Research results: Two themes with four subthemes were identified: (1) the benefits of seeing positive aspects during a grim process with the subthemes of relationship benefits and personal benefits (2) the wish to sustain positive moments and the actions taken to do so, with the subthemes of seeking contact and taking enjoyment in their parents’ pleasure. Conclusions: This study identifies the positive aspects of relationship changes in dementia as relationship and personal benefits, during a grim time. It shows that sustaining positive interaction is meaningful for children caring for their parent. Interventions aiming to support carers may address both the positive relationship aspects and the caregivers burden to improve carers’ well-being.

OP1.8. Regional and Local Dementia Care Networks in Germany:  Community-Based Support Structures for Families Living with Dementia

LAPORTE URIBE Franziska1, THYRIAN Jochen René1, WOLF-OSTERMANN Karin2, HOLLE Bernhard1

1DZNE, Witten, Germany,2University of Bremen, Bremen, Germany

Background: Providing timely and appropriate care for people living with dementia has proven difficult worldwide. In Germany, a growing number of community-based support services for people with dementia and their caregivers are organized in dementia care networks. They are models of integrated care that vary widely in size, financing models and cooperation structures. This study was conducted to – for the first time – characterize care arrangements for persons with dementia who are living at home with the support of a dementia care network.

Methods: As part of a larger observational study (DemNet-D), data on the (non-) utilization of formal and informal support were collected in standardized quantitative interviews with persons with dementia and their caregivers who received support from 1 of 13 dementia care networks at baseline and 12-months follow-up. Data on the sample and on group differences were analyzed using descriptive and inferential statistics.

Results: Altogether, 560 persons with dementia and their caregivers were enrolled into the study. At baseline, the average age of caregivers was 63.9 years (SD ± 12.9) with the majority (75.0%) being female. More than one in five (21.4%) persons with dementia were living alone. Men were supported by twice as many informal caregivers as women (2 vs. 1, p≤.000). We found regional differences in the utilization of formal support services. Unsuitability was a common reason for the non-utilization of low-threshold services. Furthermore, we identified a high level of perceived stability of the care situation.

Discussion: The data seem to support the notion that dementia care networks in Germany are successful in contributing towards a stable care situation. The results of the DemNet-D study have impacted on German legislation providing consistent funding sources and thereby improving the likelihood to translate dementia care networks into sustainable support structures.

OP1.9. Improving quality of care in young-onset dementia: The Unicity-project

BAKKER Christian1, DE VUGT Marjolein2, KOENDERS Tara3, KOOPMANS Raymond1

1Radboud University Medical Centre, Radboud Alzheimer Centre, Nijmegen, Netherlands, 2Maastricht University Medical Centre, Maastricht, Netherlands, 3Vilans, Utrecht, Netherlands

Background: In 6-9% of all people with dementia, first symptoms occur before age 65. There is a significant delay in the time to diagnosis in people with young-onset dementia (YOD), postponing the initiation of appropriate care. Dedicated YOD services are scarce, especially services also aimed at family members of people with YOD. Furthermore, healthcare professionals experience difficulties in addressing the care needs of these younger individuals and their families. In the Netherlands a YOD-specific healthcare standard was recently developed, but this standard has only been partly implemented thus far. 

Methods: In this study this YOD healthcare standard is implemented in three regions of the Netherlands. Alongside implementation a process evaluation will be performed to facilitate implementation of the standard in other regions. Also, educational programs for healthcare professionals involved in YOD caregiving will be developed and evaluated. One program will target casemanagers and one interprofessional program will target elderly care physicians, psychologists, nurse practitioners and physician assistants. Finally, an eHealth intervention for spouses of people with YOD will be tailored and evaluated for use with children and other family members. 

Results: An initial survey among stakeholders shows that early detection, improvement of both the diagnostic trajectory and service delivery need prioritization in all participating regions. This will guide further implementation of the healthcare standard. For the educational programs a survey among 40 professionals working with PwYOD revealed that management of challenging behavior and psychosocial care were highly prioritized as learning objectives. For the development of the eHealth intervention consensus has been reached about the contents of the intervention. These involve more general topics for all family members such as acceptance, regaining balance and improving communication with the person with YOD but also topics for specific family members, such as genetics. Key findings of the project will be presented at the conference.

OP1.10. Association between proxy- and self-reported cognitive decline and cognitive performance in memory clinic visitors

GRUTERS Angelique1, RAMAKERS Inez2, VERHEY Frans2, KÖHLER Sebastian2, KESSELS Roy3,4, DE VUGT Marjolein2

1Alzheimer Center Limburg, Maastricht University, School for Mental Health and Neuroscience, Department of Psychiatry and Neuropsychology, 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,4Department of Medical Psychology & Radboudumc Alzheimer Center, Radboud University Medical Center, Nijmegen, Netherlands

Background: It is uncertain whether self- and proxy-reported cognitive decline in older adults reflect an actual objective cognitive dysfunction in the clinical sense, and if these are predictive for developing dementia. The aim of the present study is to investigate the cross-sectional and longitudinal relation between subjective cognitive decline and objective cognitive performance, and to determine the predictive value for development of dementia.

Methods: We included 405 individuals without dementia from the Maastricht memory clinic participating in a longitudinal cohort study. Both patients and their family members were asked to fill out a questionnaire on their experienced cognitive decline in the past year. All participants underwent a standardized neuropsychological assessment. Follow-up assessments were performed yearly for three years, and once after five years.

Results: Patients with proxy-reported cognitive decline (n = 110; 27%) overall had a significantly lower performance on nearly all neuropsychological tests at baseline compared to patients without proxy-reported decline. In contrast, self-reported cognitive decline (n = 342, 84%) was more associated with higher levels of depressive symptoms. Proxy-reported cognitive decline predicted incident dementia (OR=2.01, 95%CI=1.13–3.59), whilst self-reported decline did not (OR=1.9, 95%CI=0.91- 4.29). Patients with both self- and proxy reported cognitive decline (n = 95, 23.5%) showed an even greater increased risk for developing dementia (OR = 2.70, CI: 1.61 – 4.52,p<.001).

Conclusion: Because proxy-reported cognitive decline reflects cognitive deterioration rather than self-reported decline, which is more related to depressive symptoms, both informant history and depressive symptomatology should be taken into account in a clinical population visiting the memory clinic.   

OP1.11. PICC - appropriately for patients living with dementia

WYLLIE Nicola, SHIELDS Sandra

NHSGGC, Glasgow, United Kingdom

Multiple cannula insertions can be painful, distressing and damaging to the veins.  When someone with dementia and /or delirium or other cause of cognitive impairment requires cannulation it can increase distress and it is likely to reduce the tolerance to the device and increase the frequency of repeat cannulation.  The ageing process can lead to problematic issues with venous access.  The RCN Standards for Infusion Guidelines state that any patient receiving greater than 3-5 days of IV therapy should receive an appropriate vascular access device and that device is identified as either a midline catheter or a peripherally inserted central catheter (PICC).  Early identification and referral, to the established vascular access service, for the appropriate device for this patient group is traditionally poor. 

As 25% of patients admitted to hospital are expected to have a cognitive impairment there is an identified opportunity to reduce the distress and the number of repeat cannulations for this group of patients.   The aim of this project was to provide a service which allows patient in the acute setting living with a dementia to receive the most appropriate vascular access device for their treatment needs at the bedside reducing the needs for patients to be moved to the radiology department and increase the overall number of patients with cognitive impairment referred for appropriate cannualation.  To add reassurance Family, Friend or Carer are welcome to be present.

Identified outcomes:

  • Appropriate access to the vascular access device most appropriate to treatment needs. 
  • Bloods can be taken without additional pain or venous damage.
  • IV therapies can be given without interruption
  • The device can stay in place for duration of treatment. 
  • Missed doses of IV drugs, including antibiotics are reduced. 
  • Improved patient experience, tolerance and overall satisfaction. 
  • Family, friends or carer are treated as equal partners in care.

OP1.12. Winston's World: research-based cartoon opens up dementia home care for reflection and learning

SCHNEIDER Justine

University of Nottingham, Nottingham, United Kingdom

Background and Objectives: Home care (or home health care) enables many people living with dementia to remain in their own homes.  Although employment conditions vary, in general the workforce that provides this essential support is mostly women, with few formal qualifications and minimal training and supervision.  Two-thirds of their clients are estimated to have dementia, and little is known about how home care is delivered in practice behind closed doors. Our research was commissioned by NIHR School for Social Care Research to address the question ‘what is ‘good’ home care for people with dementia?

Methods: We adopted a perspective of appreciative enquiry. We used interviews with carers, care recipients, relatives and commissioners, documentary analysis and diary-keeping to address the research question.  Two post-doctoral researchers worked as home carers for one year, keeping field notes on the 350 episodes of care they delivered.  Qualitative data were entered into NViVO, coded and analysed by the research team.

Results: Several scenarios emerged as typical of home care for people with dementia.  These were formulated into a narrative using fictional characters.  We commissioned a graphic novel in 5 chapters (90pp) by cartoonist Tony Husband based on these episodes.  The book, Winston’s World, offers a reference point for explaining what home care in dementia can require of the worker.  It also opens up a hidden world, and raises awareness of the vulnerability of people living at home with dementia. It enables readers to study and reflect on each drawing in order to explore a situation in depth, drawing on their own insights and experience.

Conclusions/Perspectives: Winston’s World is freely available online, to be used as a training resource for home care workers and to raise awareness about the reality of life with dementia for many people.

 

 
 

Last Updated: Wednesday 14 November 2018

 

 
  • Acknowledgements

    The 28th AE Conference in Barcelona received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe, CEAFA and Fundación Alzheimer España gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
 
 

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