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PO1. Care approaches

Detailed programme and abstracts

PO1.1. Certification-D – testing and certifying products for people with dementia at the ARCK Living Lab in Krefeld, Germany

KRAH Katrin, SPANIER Helen

Alexian Research Centre, Krefeld, Germany

From 2018 to 2050, the number of people with Dementia will increase from 3.8 to 8.5 million in north west Europe (NWE). As stationary forms of care for people with dementia are not fit the need and most people prefer to stay in their familiar surroundings, more people will live at home in the future. This requires supporting through technical products. People with dementia and their care givers often do not know or trust existing products.

The interreg project “Certification-D” is set up for three years and has a budget of 3.8 million euro. The aim of the project is to set up a certification process with a standardized quality mark for technical devices for persons with dementia. Products need to complete this standardized certification process, which is universal and applicable. Products are assigned to one of three categories: Enabling / Assistance,- Safety / Security,- Life / Leisure.

To validate products each category uses living labs to test them (four in total). Each living lab works closely with participating people with dementia and their caregivers. The living lab in Krefeld, Germany is based in the Alexian research centre (ARCK). ARCK is part of the non-profit Clinic of Geriatric psychiatry and Psychotherapy, Maria-Hilf-Hospital, Alexian Krefeld GmbH. Participants are recruited through consulting at ARCK, cooperation with general practitioner’s or after stationary stay at the hospital.

The living lab has minimum ten participants per year, who are closely accompanied. Results will be included in trainings and courses. NWE- wide cooperation’s help spreading information. At the moment research is being done on how the products can be tested best and comprehensively (-regarding functional and non-functional requirements).

By the end of the project knowledge of technical devices is increased (people with dementia and caregivers know, buy and use assistive products). SME´s are supported.

PO1.2. Apathy and use of Assistive Technology (AT) as predictors of functional performance in Alzheimer’s disease

BREGOLA Allan, TRUCCO Ana Paula, CAMINO Julieta, MIOSHI Eneida

Faculty of Medicine and Health Sciences, University of East Anglia, Norwich, United Kingdom

Background: People with Alzheimer’s disease (PwAD) with marked apathy present with lower functional performance. However, it is not clear whether Assistive Technology (AT) could effectively help improve functional performance. We investigated whether and how apathy and use of AT influence PwAD’s performance, considering level of cognitive deficits.

Methods: Cross-sectional analyses including 99 PwAD. Cognitive deficits (Addenbrooke’s Cognitive Examination-ACE-III; score range 0-100) were defined as Mild-moderate change (MMC:75-100), Moderate-severe change (MSC:39-74) and Severe-very severe change (SVSC:0-38). Disability Assessment for Dementia (DAD) assessed Basic (BADL) and Instrumental (IADL) activities of daily living. Apathy frequency (absent;occasionally/often;frequently/very frequently) was identified through the Neuropsychiatric Inventory (NPI-Q). Information on use of AT included: use of a)Prompts&Reminders; b)Leisure; c)Communication; d)Safety devices. Binary regression models were used to explore the association between apathy (model 1) and use of AT (model 2) on low performance (<80%) of ADLs (BADLs and IADLs). Analysis was repeated for the three groups (cognitive scores).  

Results: PwAD mean age was 78.4±6.6 years; 60% were male. Low performance on BADLs was high in all groups: MMC=45.8%; MSC=50% and SVSC=84.2%. Low performance on IADLs was greater: MMC=83.3%, MSC=90.7% and SVSC= 94.7%. In terms of AT, Prompts&Reminder devices were most commonly used (51.1%).

In the MSC, apathy (OR=5.0; 95%CI: 1.1-22.8) and use of Prompts&Reminders (OR=3.2; 95%CI: 1.0-9.9) were associated with low BADL but not with low IADL performance. Nevertheless, when both variables were included in the model, no association between apathy or AT use and BADL performance remained. No significant association was found between apathy or AT use and ADL performance in other groups.  

Conclusion: Lower performance in BADLs appears to be associated with apathy and use of AT. However, these effects were seen only when variables were tested independently, suggesting that future research should investigate further the interaction between apathy, AT use and ADL performance.

PO1.3. Does carer management style predict functional performance in medication management in Alzheimer’s disease?

BREGOLA Allan, TRUCCO Ana Paula, CAMINO Julieta, MIOSHI Eneida

Faculty of Medicine and Health Sciences, University of East Anglia, Norwich, United Kingdom

Background: A comprehensive approach comprising good communication, assistive technology (AT) and supportive carer styles seems to benefit functional performance. Less is known about such approach in medication management.  

Aim: To explore association of carer management styles with medication management, considering use of AT, number of medications and global cognition.

Methods: Cross-sectional analyses; 99 people with Alzheimer’s disease (PwAD) and family carers. Dementia Management Strategies Scale (DMSS) identified primary carer style: Criticism(CS), Encouragement(ES), Active Management(AMS). Disability Assessment for Dementia (DAD) assessed Initiation and Effective Performance of medication management. Covariates included: use of AT (medication reminders/dispensers), number of medications, global cognition (Addenbrooke’s Cognitive Examination-ACE-III: scores 0-100). Two binary regressions models (Criticism style as reference category) investigated if ES and AMS (independent variables) were associated with dependency in Initiation (dependent variable, model 1) and Effective Performance (dependent variable, model 2) of medication management. Covariates were AT use, number of medications, global cognition.

Results: 32% of carers adopted ES; 25.8% AMS. CS was adopted by most (42.2%). PwAD age was 78.4±6.6y; 60% male; similar proportions (71%) were dependent in Initiation and Effective Performance of medication management; one quarter (25.3%) used medication reminders/dispensers; average number of medications taken was 4.6±3.3; ACE-III was 55.8±21.2.  Carer ES was associated with PwAD’s Initiation of medication management (OR=4.11; 95%CI: 1.31-12.85; p=0.01); no association was found with Effective Performance. ES was marginally associated with Initiation when analysis was controlled by the three covariates (OR=3.45; 95%CI: 0.99-12.05; p=.05). No statistical significance was found between AMS or CS in Initiation or Effective Performance.

Conclusion: Carer Encouragement style seems to support Initiation of medication management to an extent, possibly by overcoming PwAD’s apathy. However, when great number of medications, AT use and severe cognitive deficits are part of the context, carer encouragement alone does not seem to be enough to support functional deficits.

PO1.4. Using Fitbit to record activity levels and sleep quality in people with dementia

GALLAGHER Niamh, DOYLE Priscilla, SMYTH Siobhán, CASEY Dympna

National University of Ireland, Galway, Ireland

This poster outlines the findings on the acceptability and feasibility of using Fitbit to record activity levels and sleep quality in people with dementia, as part of a multi-component psychosocial intervention.

Nine community-dwelling people with mild to moderate dementia were asked to wear a Fitbit, day and night, for the duration of an 8-week exercise programme. A key initial finding was that none of the people with dementia owned smartphones. The Fitbits were therefore set up on their primary carers’ phones, with the permission of both parties, and people with dementia were shown how to access their data. People with dementia were asked to charge the Fitbit and sync the device to their carer’s phone weekly. The feasibility and acceptability of wearing the Fitbit was captured via qualitative interviews with people with dementia and their primary carers (n=18). Daily activity and sleep data were extracted to assess wear time and frequency of data synchronisation. The time needed for researchers in relation to initial set-up and follow-up support was also recorded.

Overall, acceptability of wearing the Fitbit among people with dementia was high, and carers were willing to support people with dementia to use it during the study. However, preliminary results indicate adherence to wearing the device over the 8 weeks of the exercise programme was low: wear time was higher for daytime activity tracking than for night-time sleep tracking. Few people with dementia engaged with the Fitbit features, primarily using it to check the time. Carers involvement was essential to facilitate set-up, charging and syncing the device, and technical issues required ongoing support from researchers.

Most people with dementia found the Fitbit acceptable to wear, yet few continuously wore it during the study, suggesting that significant researcher support and carer input would be required to improve adherence in future studies.

PO1.5. Technology-based self-monitoring for people with dementia – an explorative pilot study

OEKSNEBJERG Laila1, WOODS Bob2, WALDEMAR Gunhild1

1Danish Dementia Research Centre, Copenhagen, Denmark, 2Dementia Services Development Centre Wales, Bangor, United Kingdom

Digital self-monitoring is widely used in healthcare to monitor states and symptoms related to various health conditions. It can be used both to support self-management by identifying and raising awareness on symptoms and behaviour, and to monitor outcome of interventions.

The use of digital self-monitoring has been explored in various populations, including middle-aged and older adults, in some cases caregivers of people with dementia. However, self-monitoring for people with dementia is sparsely explored. The aim of this pilot study was to explore feasibility and acceptance of digital self-monitoring among people with early-stage dementia.

The ReACT app was designed as an assistive technology to support self-management of people with dementia [1] and applied in two intervention studies [2] [3]. This pilot study on self-monitoring was an additional sub-study in the ReACT project. A self-monitoring feature was built into the ReACT app, asking the participants [N=19] to rate their current mood and health on visual 10-point scales.  

Results indicated that the self-monitoring features were generally well accepted, and response rate was high. Feasibility, however, generally depended on participants’ overall adoption of the app.

Results of this explorative study indicate that digital self-monitoring can be feasible for people with early stage dementia. Moreover, integrating self-monitoring features in existing assistive technology can be a successful method of delivering digital self-monitoring.

1: Øksnebjerg et al. (2019), doi: 10.1159/000500445

2: Øksnebjerg et al. (2019), doi: 10.1080/13607863.2019.1625302

3: Øksnebjerg et al. (2020), doi: 10.2196/14694

PO1.6. The promise of virtual reality in elderly care: VirtuAAL* project results

GOSPODINOVA Nellie1, MARINESCU Mihaela2, SPIRU - DAKAS David1, MARZAN Mircea1, BARTOLOME Jose Ignasio3, COLAS Felix4, GAMMELGAARD Mikkel5, VELCIU Magda1, VOICU Andrei1, PAUL Cosmina1, SPIRU Luiza1

1Ana Aslan International Foundation, Bucharest, Romania, 2Researcher, Bucharest, Romania, 3Ideable Solutions, Biscay, Spain, 4University of DEUSTO, Bilbao, Spain, 5Center for Assisted Living Technology, Health and Care, Aarhus, Denmark

Nowadays, assistive technologies are increasingly used in elderly care. Virtual reality (VR) interventions have already demonstrated their potential for physical and cognitive improvement in people with mild cognitive impairment (MCI) or major neurocognitive disorder. VirtuAAL project aimed to provide innovative solution for combating cognitive impairment using VR technology. It aspired to refine existing immersive serious games and to test the impact of these technologies in older adults who have MCI.

3 VR games on 2 VR systems: HTC Vive and Oculus Go were tested in Romania and Denmark in 2019. Unity was used for the creation of the VR games. In total, 55 older adults in both countries participated in the field trials.End users in Romania were highly educated (superior studies), and had relatively high level of interaction with new technologies and common usage of devices and apps. The games were Kitchen, Forms and Bank. Seniors had to fry eggs, place objects from a table in their corresponding shape, and to withdraw money from an ATM. Field trials tested the usability, accessibility and impact of the VirtuAAL platform.

The results we obtained showed that the 3 games were considered easy and pleasant. Romanian seniors reported that VR interaction was highly immersive, accessible, engaging, and entertaining. Also, usability and timing improved with repeated training on VR. The combination of HTC VIVE glasses and Leap motion was found to be the most successful for the end users and caregivers and it will be the basis of the Kwido VirtuAAL commercial product. VR seems to be a promising field of using ICT in eldercare. Further research would need to focus on studying the impact of VR games on cognitive improvement. New games will be developed with more difficulty levels.

*VirtuAAL-SCP (AAL/Call2018/150-SCP) project funded by the AAL Programme

PO1.7. The benefit of using indoor technology to decrease the complex effect of elderly social isolation

VELCIU Magdalena1, GIANNOGLOU Vasilis2, PAUL Cosmina1, GOSPODINOVA Nelie1, POPOIU Oana1, SPIRU-DAKAS David1, MĂRZAN Mircea1, SPIRU Luiza1

1Ana Aslan International Foundation, Bucharest, Romania, 2Geoimaging Ltd, Nicosia, Cyprus

There are a number of technological supportive solutions available for dementia and Alzheimer's disease.  The solutions assist diagnosis, care, and aging but there are not many to help prevent the onset of the symptoms of dementia. One out of four people thinks that there is nothing we can do to prevent dementia (World Alzheimer Report, 2019).

This article aims to bridge the gap between elderly people and indoor technologies designed for healthy aging and preventing cognitive decline. Technologies have the potential to cope with loneliness and social isolation factors which beset the risk of developing dementia.

We present the IOANNA integrated solution developed by the “Integration Of All stores Network & Navigation Assistant” project and wisely adapted for elderly needs. It is designed to assist the elderly with their daily activities (street navigation, shopping, chatting, and volunteering),  and keep them active, informed, and able to relate to their peer group, carers, and doctors.  

A qualitative research method is designed for collecting data using in-depth semi-structured interviews. Twenty elderly, 65 years and over, from Romania and Cyprus, gave us their feedback about the perceived benefits of the prototype. An inductive process was involved to derive the conclusions moving from specific results to broader generalizations and theoretical concepts.

We conclude that the elderly users’ were able to use the technologies to assist them to lead an active, healthy, and interactive life. To increase the technology’s benefits for coping with loneliness and social isolation, the prevention and/or intervention has to be a three-fold approach: a) Customization to adults needs who risk social isolation, b) Integration of a multilayered action by helping in different areas (basic necessities, emergencies, communication, social involvement) and c) Achieving a synergistic effect for preventing the disease before symptoms onset.

PO1.8. Perceptions of health care professionals on e-Health solutions for cognitively impaired community-dwelling older adults and informal caregivers in Flanders (BE) and Québec (CA)

DEQUANTER Samantha1, GAGNON Marie-Pierre2, NDIAYE Mame-Awa3, BOUCHER Mylène3, GORUS Ellen4, FOBELETS Maaike1, BUYL Ronald1

1Faculty of Medicine and Pharmacy, Department of Public Health Sciences, Vrije Universiteit Brussel, Brussels, Belgium, 2Research Center on Healthcare and Services in Primary Care of Laval University (CERSSPL-UL), Québec, Canada; Faculty of Nursing sciences, Université Laval, Québec, Canada, 3Research Center on Healthcare and Services in Primary Care of Laval University (CERSSPL-UL), Québec, Canada, 4Faculty of Medicine and Pharmacy, Department of Gerontology, Vrije Universiteit Brussel, Brussel, Belgium

Purpose: This study aims to understand the perceptions of health care professionals (HCP) on the needs of community-dwelling cognitively impaired older adults and informal caregivers concerning e-Health support in Flanders and Québec. Furthermore, factors related to the use of e-Health solutions in these target groups, as well as to broader implementation in practice are considered.

Methods: Two semi-structured focus groups of HCP were conducted. Altogether, 4 occupational therapists, 2 social workers, 3 nurses, 1 geriatrician, 1 neurologist, 1 general practitioner, 1 manager of a home nursing service, 1 special education technician and 1 physiotherapist participated. Both groups were audio-taped, transcribed verbatim and analysed thematically.

Results: Along with GPS-tracking and personal alarm systems, medication and task management systems are the most observed in practice. These are perceived as beneficial for safety, orientation and functional independence of older adults, and for reassuring informal caregivers and HCP (i.e. therapy compliance). Moreover, they are believed to potentially delay more intensive care (i.e. daycare centre) and lead to more adapted hospital discharges. However, the absence of human aspects in the technology (e.g. in robots) could have adverse effects on well-being. Perceived facilitators for e-Health acceptance were disease awareness, peer support and education, ease of use and customizability, try-out opportunities and longer battery autonomy. Barriers for acceptance were low digital literacy, lack of knowledge on the range of solutions available, high costs, incompatible system language and privacy concerns. All HCP recognized the value of e-Health, however, they lacked reliable information and therefore were highly unsure about recommending them.

Conclusion: Broad support exists for the use of e-Health for community-dwelling cognitively impaired older adults and informal caregivers, however the lack of adequate decision support for HCP interferes with successful implementation in practice. Future research on how to properly educate and support HCP is needed.

PO1.9. RECage project: a prospective cohort study for coping with behavioral and psychological symptoms of dementia

TSATALI Marianna1, POPTSI Eleni2, POSSENTI Mario3, LAZAROU Ioulietta2, PARASKEVAIDIS Nikos4, FASCENDINI Sara5, TSOLAKI Magda2, DEFANTI Carlo Alberto5

1Greek Association of Alzheimer's Diseases and Related Disorders, Thessaloniki, Greece, 21st Department of Neurology, School of Medicine, Aristotle University of Thessaloniki (AUTh), Makedonia, Hellas, Thessaloniki, Greece, 3Federazione d’elle Associazioni Alzheimer d 'Italia (FAI), Rimini, Italy, 4Greek Association of Alzheimer’s Disease and Related Disorders, Thessaloniki (GAADRD), Makedonia, Hellas, Thessaloniki, Greece, 5Fondazione Europea di Ricerca Biomedica (FERB Onlus), Milano, Italy

Background: Behavioral and Psychological Symptoms of Dementia (BPSD) are some of the most challenging problems arising during the course of dementia, causing severe stress in people with dementia (PwD) and their families. To cope with these symptoms, non-pharmacological treatment is in the first line. Special medical Care Units for people with dementia and BPSD (SCU-B) are residential medical structures, where patients with BPSD are temporarily admitted when their behavioral disturbances are difficult to be managed at home.

Objective: The major objective of RECage project is to assess the SCU-Bs short-term and possibly long-term effectiveness to alleviate BPSD and improve the quality of life of PwD and their caregivers. Methods: The study is a prospective one and 500 persons will be enrolled. 250 patients with dementia, having difficulty-to-control behavioral crises will be recruited by five clinical centers across Europe, and will be admitted to SCU-Bs for a short period of time. The other 250 people will be followed up by six other centers without SCU-Bs via outpatient visits. The study will last for over three years. Statistical analysis will include ANOVA’s and factorial ANOVA for comparison among centers, while a cost-effectiveness analysis will be performed comparing the cohorts. Time to the nursing home placement will be compared between the two cohorts, while analysis regarding the caregiver’s burden in the two will be also applied.

Results: The relative results of the cohort study, will allow adopting a model for each targeted country. Therefore, useful recommendations will be created for the implementation of the intervention in the countries that take part in the study.

Discussion: Based on the RECage project’s expected results, a plan for scaling up the intervention in countries where SCU-B does not exist, such as Greece and Italy will be provided.

PO1.10. “Living well with dementia” groups in Italy

PRADELLI Samantha1, LORICO Fabio1, MARINI Zeudi1, BOSELLI Barbara1, GARDINI Simona2, BORELLA Erika3

1AULSS 7 Pedemontana, Bassano del Grappa, Italy, 2Gruppo sostegno Alzheimer ODV, Fidenza, Italy, 3Università di Padova, Padova, Italy

Introduction: “Living Well with Dementia” –LWD– (Cheston and Marshall, 2019) is a new type of intervention for people with major neurocognitive disorder (DNCM). Unlike psychosocial approaches that aim to support cognitive functions and well-being through cognitive stimulation, LWD groups are designed to encourage people with DNCM to discuss their feelings and emotions about the disease and to support them adapting to the new condition.  

Purpose: The goal of this study is to investigate the benefits and limitations of LWD intervention, after its translation and adaptation to the Italian context.

Methods: Two groups were established for a total of 11 people who recently received a diagnosis of DNCM from the Memory Clinic (5 men and 6 women). The groups were led by staff working within NHS memory clinics. Each group consisted of ten weekly sessions of 75 minutes. Interventions gains in depression -PHQ-9-, anxiety -GAD-7-, Scale of Positive and Negative Experience and Self-report questionnaires, were examined.

Results: Firstly and interestingly there were no drop-outs. People with DNCM and family members showed full satisfaction with the service and would recommend it to people in a similar situation. An increase in positive emotions and a decrease in negative ones emerged. GAD-7 and PHQ-9 scores decreased in people with DNCM. Eight people with DNCM are now attending a self-help group

Conclusions: "Living Well with Dementia" seems to be an important resource for the active adaptation of the person who faces the experience of living with DNCM. The qualitative and quantitative results, showing a reduction in anxiety and depression scores, are very promising. Larger multi-centre efficacy studies are now needed to evaluate LWD as a new standard intervention in Memory Clinics in Italy.

Cheston, R., & Marshall, A. (2019). The Living Well with Dementia Course: A Workbook for Facilitators. Routledge.

PO1.11. Interactive technologies supporting cognition in people with Dementia – preliminary results!

GREGERSEN Rikke1, SYLVESTERSEN Janna Bohn2, HALD Anja3

1VIA University College, Hinnerup, Denmark, 2VIA University College, Århus N, Denmark, 3Med Tech Innovation Consortium, Århus N, Denmark

Background: Dementia causes cognitive decline in people with dementia (PWD). Cognitive stimulation therapy (CST) is a psychosocial intervention capable of improving cognition in PWD. A Danish version of the certified CST group program has been validated. Now, we are collaborating on Interactive technologies supporting a 12 week`s maintenance program (mCST) to be used in day care facilities. There is high potential with such technology. However, only little efforts have been done so far.

Aim: is to develop a digital prototype of the mCST programme targeted Danish PWD; the product: -1) being user-friendly, intuitive and meaningful; does -2) motivate PWD for programme adherence, -3) promote positive changes in participant`s cognition and quality of life (QOL), and -4) supports CST facilitators.

Methods: The prototype of 24 digitalized mCST sessions will be finished August 2020 and will be tested in a pre-post pilot design at 0, 6 and 12 weeks. Sessions are built in collaboration with technology innovators, PWD, relatives and dementia experts. Ongoing sub parts have been user-tested along the developmental process. The system includes a digital coach assisting participants/staff through sessions. The programme will be facilitated for six outpatients with diagnosed dementia, MMSE 15-25 (2x week in 12 weeks, Aug–Dec 2020). Focus group interviews with participants, relatives and staff at 6 weeks and following programme completion will add data on user satisfaction. Number of completed sessions will be registered and logbooks used. Outcomes on cognition and life quality will be measured by MMSE and QOL at week 0, 6 and 12.

Results: October 2020, we will have preliminary results on programme adherence, user satisfaction with content and technology, and participant´s cognition and QOL results following 6 weeks mCST (first 12 sessions).

Conclusion: The product and preliminary results will be discussed

PO1.12. Exploring views and needs of (in)formal caregivers towards unobtrusive monitoring in home-based dementia care

WREDE Christian, BRAAKMAN-JANSEN Annemarie, VAN GEMERT-PIJNEN Lisette

Centre for eHealth & Wellbeing Research, University of Twente, Enschede, Netherlands

Background: Extended independent living of people with dementia (PwD) may not only yield immense emotional benefits but also puts more pressure on the (in)formal care network. Novel eHealth-approaches have been developed to delay institutionalization and provide support in home-based dementia care. One innovative approach is unobtrusive in-home monitoring of lifestyle, health and safety using non-wearable sensors (such as Wifi-, radar- or acoustic-based systems) that do not interfere with daily life of PwD. As these technologies develop rapidly it seems essential to keep track of potential users’ needs and attitudes as they too can be expected to change with time. This study therefore aimed to explore the views and needs of informal and formal caregivers of independently living PwD towards unobtrusive in-home monitoring.

Method: We included 35 participants in total. Semi-structured interviews were conducted with informal caregivers of independently living PwD (n=19); focusgroups were held with home care professionals (n=16). Both sets of participants were presented with examples of unobtrusive in-home monitoring, followed by questions targeting expected benefits, barriers, needs and privacy concerns. Inductive qualitative content analysis was used to derive themes and categories.

Results: The top 5 desired monitoring targets among both groups included falls, circadian rhythm, noctural unrest, eating and personal hygiene. Most dominant benefits included reassurance, better reaction to care needs and the objectivity of monitoring data. Most dominant barriers included attention theft, questionable utility of monitoring in certain cases and the fear of replacing human contact by technology. Privacy concerns appeared to be less of an issue than anticipated. Most participants expressed they would accept a trade-off between privacy vs. the feeling of safety.

Conclusion: The study showed that unobtrusive in-home monitoring brings along new expected benefits and barriers. Potential developers should therefore create tools for helping caregivers and patients in making informed decisions in the future.

PO1.13. Virtual reality based mindfulness training, sensory activation and assessment for dementia care

PALETTA Lucas1, SCHÜSSLER Sandra2, KOBER Silvia Erika3, ZWEYTIK Elke4, STEINER Josef4, ANDREU Jean-Philippe1, FUHRMANN Ferdinand1, GRABHER Andrea5, TABERHOFER Anna5, MAYR Marlene5, STOPPACHER Laura3, LODRON Julia2, PSZEIDA Martin1, DINI Amir1, WOOD Guilherme3, STAUBMANN Wolfgang6, LAMPL Christina6, DRAXLER Theresa6, KÖLBL Gertraud4

1JOANNEUM RESEARCH Forschungsgesellschaft mbH, Graz, Austria, 2Medical University of Graz, Graz, Austria, 3University of Graz, Graz, Austria, 4Sozialverein Deutschlandsberg, Deutschlandsberg, Austria, 5GEFAS Steiermark, Graz, Austria, 6FH JOANNEUM, Graz, Austria

Recent studies underline the importance of cognitive reserve, which is supported by stress reduction, pleasure experience and meditation, for mental health. Mindfulness training is successfully applied to dementia and indicate a lasting positive effect on cognitive reserve, well-being and motivation. The research project OpenSense investigated the potential of VR-based intervention and assessment for dementia care in a proof-of concept study. The VR-based intervention was developed to foster mindfulness and sensory activation. 

VR-based intervention was applied in persons with dementia (PwD) with Alzheimer’s dementia (AD; n=12, age M=85.0 years, MMSE M=21.5) and healthy controls (n=12, age M=75.1 years, MMSE M=30) using 30 minutes of panoramic video-based multi-sensory experiences presenting stimuli that empower relaxation (body-scanning, beach, forest) and activation (bakery, orchestra). EEG-based alpha-band signals (8-12 Hz) associated with relaxation and inhibitory control were recorded before, during and after intervention and eye tracking was applied during intervention.

Pre-post EEG analysis showed significant increases in alpha power and brain connectivity for PwD with AD and controls (post > pre, p<.05). EEG baseline alpha power demonstrated higher values for healthy controls than for PwD (AD). Eye movement analysis demonstrated significant differences between PwD (AD) and controls: eye blink rate AD > controls, p=.004(**) from the observation of a 3 minutes video, and significant correlation (Rho=.607, p=.003(**); 3 minutes video) was achieved between eye movements and the Freiburg Mindfulness Inventory score. 

The potential of VR-based intervention based on mindfulness and sensory activation is very promising: the study demonstrated significant increases of EEG alpha power and brain connectivity where PwD usually suffer from decline and gaze data acquired during intervention indicate potential for non-invasive assessment for decision support. OpenSense anticipates numerous opportunities for novel VR-based care services for empowering cognitive reserve, inducing sensory activation, raising awareness and motivation for self-regulation, and as pervasive assessment tool.

PO1.14. Exploring the impact of a robotic cat for older adults and people with dementia: a scoping review

KOH Wei Qi, CASEY Dympna

National University of Ireland, Galway, Ireland

Background: Social robots have been viewed as a type of promising technological interventions to promote the social health of older adults, including people with dementia. Research has shown several benefits of social robots on the psychosocial health of older adults. However, issues such as the high costs can lead to a lack of equal access. The Joy for All robotic cat is designed for older adults, and is substantially more affordable as compared to other pet robots. This scoping review presents synthesized evidence on the use and impact of the Joy for All robotic cat for older adults, including people with dementia.

Methods: The Arksey and O’Malley framework was used. Electronic databases and Google Scholar were searched to identify articles. Hand searching and citation searching was also conducted. Intervention studies that used the Joy for All robotic cat, included older adults and were published after 2016 were included.

Results: Six papers were included in the final review. Studies were conducted in the United States and the United Kingdom in long term care settings, participants’ homes, and an intensive care unit. Most studies were conducted with older adults and people with dementia. Positive impacts from the use of the robotic cat include reduced agitation, improved affect, companionship, and interaction. Staff reported mixed perceptions about the robotic cat. Issues associated with its use include participants’ misperception of it as a living animal, users’ dislikes, and concerns about infection control.

Conclusions: There is a gap in the scientific literature as studies are scarce and existing studies have small sample sizes and lack strong quality. Current findings resonate with the findings from other studies conducted with similar social robots, which facilitated positive psychosocial effects among older people, including people with dementia. However, conclusions are limited. Higher quality studies with larger sample sizes are needed.   

PO1.15. Raising awareness of the use of touchscreen tablets among people with dementia in day care centre

MABIRE Jean-Bernard1, BIZE Klara2, COMPERE Florian3, AQUINO Jean-Pierre1, CHARRAS Kevin1

1Fondation Médéric Alzheimer, Paris, France, 2Université Paris 8 Vincennes Saint-Denis, Saint-Denis, France, 3Université Paris Nanterre, Nanterre, France

Introduction: Touchscreens devices are common in our daily environment and are being increasingly used for support and care of people with dementia. The goals of this study were to assess to what extent people with dementia found interest, satisfaction and sense of achievement when using such devices, and if individual or group sessions were more suitable for learning how to use them.

Methods: The study involved 27 people with dementia attending two different day care centers in Paris suburbs. They were divided into five groups: three individual learning sessions (one tablet for each participant) and two group learning sessions (one tablet for two participants). The intervention consisted of eight 30-minute sessions with three facilitators. Each session consisted in learning basic functions, discovering specific features and enabling leisure time or free exploration. Interest in the use of tablets was assessed through direct observation and a pre-post intervention questionnaires. Satisfaction was assessed after each session with a questionnaire. Usage was evaluated in terms of amount of help needed, steps required and achievement score.

Results: At first sight, participants showed moderate interest for tablets. However, satisfaction of use during sessions was high. Average scores of achievement and for carrying out basic actions increased during the first sessions and then reached. Difficulties encountered by participants included tactile sensitivity, forgetting steps to be carried out from one session to the next, and distractions caused by unintended notifications.

Conclusion: People enjoyed learning sessions but did not express a significant amount of interest in the use of touchscreen devices in daily life. Offering more frequent sessions and a relay at home could promote empowerment of people with dementia when using touchscreen tablets. We need more studies to investigate personal interests of people with dementia for touchscreen tablets, and how to adapt learning and daily use. 

PO1.16. Smart big data platform to offer evidence-based personalized support for healthy and independent living at home

POPOIU Oana, SPIRU Luiza, MARZAN Mircea

Ana Aslan International Foundation, Bucharest, Romania

SMART BEAR is a multi-centric observational research study (5 large-scale pilots, spanning 6 different countries – Greece, Italy, Portugal, France, Spain, Romania), aiming to implement state-of-the-art technology in the everyday life of elderly citizens with specific health challenges (including cognitive deficits, anxiety, depression and frailty) by integrating off-the-shelf friendly to use devices into an innovative platform – SMART BEAR platform.

The SMART BEAR platform will act as an assisting and personalized tool for daily routine, integrating data collected through sensors, assistive smart medical devices and end-user input via structured questionnaires and interaction.

The Romanian pilot is conducted by ANA ASLAN International Foundation, an European Excellence Center for Neurocognitive Diseases (info.eadc) and a Geriatric/Gerontology and Old Age Psychiatry Excellence  Center for Romania.

Digital technologies as in SMART BEAR could contribute by cognitive stimulating serious games, lifestyle coaching for healthy dietary habits, physical and social activities, measuring performed activities, monitoring subsequent pathologies and therapy adherence, supporting better indoor orientation (intelligent lightings and sensors) and safer outdoors travelling (GPS location trackers).

Primary objective: the correlations between the compliance with the recommended interventions and the individual evolution on the cognitive status. The hypothesis is that participants with increased adherence to the recommended interventions (serious games-3 sessions/week, physical activities - minimum 150 min/week) and social interaction, will have better outcomes compared to those with lower adherence.

Secondary objective: the correlations between continuously monitored lifestyle parameters, (e.g. sleep quality) and individual cognitive & functional outcomes. The hypothesis is that better sleep quality will be correlate with better cognitive outcomes.

Novel technologies such as those to be employed in the SMART BEAR project have indeed the potential to benefit, assess, monitor and support older people to live independently and improve their quality of life.

This project has received funding from EU’s Horizon2020 R&D programme under GA No.857172

PO1.17. Collaborative partnership on the development of tools to promote personalized communication about everyday technology

PEOPLES Hanne1, KOLDBY Kim2, HANSEN Mette Hartvig2, BOJEN Lars2, NIELSEN Lasse Overballe3

1Faculty of Health Sciences Health Sciences Research Centre, UCL Department of Rehabilitation, SDU, Odense, Denmark, 2UCL University College, Odense, Denmark, 3Linné University, Växjö, Sweden

Background: It is known that technology has the potential to support and facilitate everyday living for families with dementia, e.g. by enabling people to continue meaningful activities and to stay connected with family and friends. However, little is known about ways to facilitate collaboration and involvement among families with dementia and health professionals in regards to this area. Accordingly, the purpose was to investigate ways to personalize communication and shared-decision making on the use of everyday technology to improve the overall quality of municipality service in this area.

Methods: This project was based on ideas of design thinking and theory of change. The data comprised semi-structured interviews, focus groups and participant observation. The project involved three stages of exploration and tool development, followed by a six months pilot test. The sample consisted of 83 participants: 47 health professionals, 33 people with dementia and 3 relatives. A thematic analysis let to the findings.

Results: This project was initiated and funded by ‘The Development Center for Dementia’, which consists of eight Danish municipalities and two health educations. The study resulted in three interrelated tools: 1) a set of dialogue cards to promote person-centered communication and shared-decision making about technology to support everyday living, 2) A concept for developing health professionals’ technology skills, and 3) A technology catalog that can be used across municipalities.  

Conclusion: This project resulted in three tools, which combined contribute to a more personalized and user-friendly approach to communication and dissemination about everyday technology, that may inspire quality development. Using these tools, families with dementia are invited to participate in a dialogue about technology in relation to their everyday lives, as opposed to a more traditional screening of needs.  

PO1.18. Development of a digital resilience monitor for informal caregivers of persons with dementia to prevent crises

OOSTRA Dorien, NIEUWBOER Minke, OLDE RIKKERT Marcel, PERRY Marieke

Radboudumc Alzheimer center, Nijmegen, Netherlands

Background: The number of people with dementia living at home increases, resulting in a growing societal dependency on informal care. Informal caregiving causes a considerable physical and mental burden on caregivers’ wellbeing, which is often a direct reason for crisis admission of the person with dementia. Monitoring caregiver’s wellbeing and resilience followed by early intervening by case managers may prevent crisis. Our aim is to develop and test a user-friendly digital monitor to assess wellbeing and resilience of caregivers and enable case managers to provide timely support.

Methods: A human centered design method was used to identify wishes and needs, develop ideas and test visual prototypes of the monitor. Focus groups with end users and experts in the field of primary dementia care took place. End users were caregivers and professionals from different disciplines. Experts were researchers, clinicians, innovation experts and application designers.

The 3-month pilot study includes caregivers and case managers and consists of monitoring wellbeing and resilience weekly by a set of questions. Intervention delivery and acceptability will be assessed via a questionnaire and interview.

Results: Wishes, needs and functionalities were identified during two focus group meetings. To detect deterioration of caregivers’ wellbeing earlier, a digital tool connected to a dashboard for case managers is desired. To assess wellbeing, questions were reviewed during a third meeting covering the topics: social support, reciprocity, burden, mood, own activities, small crises, person with dementia. Caregivers want to fill in approximately seven questions per week.

Preliminary results of the pilot study will include adherence, user satisfaction and usability.

Conclusion: This methodological approach will result in a product that best meets the needs and wishes of caregivers and case managers in order to prevent crises. The pilot study will provide insight into the possible effectiveness and usefulness of this product in practice. 

PO1.19. A companion robot pet; the experiences of residents living with dementia in long-term care

CARRAGHER Lucia1, MARRON Ann2

1NetwellCasala, Dundalk Institute of Technology, Dundalk, Ireland, 2Health Service Executive (HSE), Dundalk, Ireland

Two-thirds of nursing home residents have dementia and up to 90% have behavioural and psychological symptoms of dementia that may be related to unmet need.    With the incidence of dementia rising sharply at ages greater than 75, the demographic trend towards an increasingly older population is expected to result in a tripling of dementia cases by 2050.  To maintain high quality care, and contain costs, innovative solutions are urgently needed.  

Artificial intelligence robots offer new possibilities for psychosocial interventions, but uptake remains low.  This study explores the impact of a companion robot pet on residents’ stress, mood, social engagement with other residents and staff and quality of life in general.  We recruited 12 residents from a nursing home in Ireland and allocated 6 to the intervention group and 6 to the control group.  Residents in the intervention group, received three facilitated 15 minutes sessions each week between 1-5pm. Residents in the control group received usual care.  We carried out video observations using small action cameras, before, during and after each intervention. 

The primary outcomes of interest include:

Agitation-measured by Cohen-Mansfield Agitation Inventory-Short Form (CMAI-SF; 14 short-item).

Mood and engagement―measured from video observations.

Facial emotional responses – measured using ‘Observed Emotion Rating Scale’ (pleasure, anger, anxiety or fear, sadness), and coded by frequency.

engagement- measured by duration, visual and verbal alertness e.g. interest in robot, watching and interacting with it, maintaining eye contact, talking to it.

Non-engagement (not watching robot, avoiding eye contact).

Verbally engaged/not (e.g. participating in conversation, initiating statements/not).

Social interaction―each instance where a participant uses the robot to interact with others is coded. 

Secondary outcome measures include staff and family perceptions.

Full results available in June 2020. 

Ethical approval for this study was granted by the Ethics Committee, School of Health and Science, DkIT.

PO1.20. Understanding the barriers and facilitators affecting the implementation of social robots for older adults including people with dementia: a scoping review

KOH Wei Qi1, FELDING Simone Anna2, CASEY Dympna1

1National University of Ireland Galway, Galway, Ireland, 2DZNE German Center for Neurodegenerative Diseases, Dortmund, Germany

Introduction: Psychosocial health issues among older adults, such as depression and social isolation are an important cause of morbidity and premature mortality for older adults. People with dementia are particularly at risk. With a rapidly aging population, these issues are expected to be amplified. Studies have reported positive findings regarding the effects of social robots on the psychosocial health of older adults, including people with dementia. Nevertheless, little is known about factors affecting their implementation in real-world practice.

Objectives: The objectives of this review are to synthesize variants in terminologies that are used to describe the implementation of social robots in the current literature base, and to identify barriers and facilitators affecting their implementation in practice.

Methods and analysis: This study follows Arksey and O'Malley's approach with methodological enhancement by Levac at al. The taxonomy of implementation outcomes is used to guide the systematic search in electronic databases. Reference searching and hand searching will also be conducted. A two-phased article screening and selection process is undertaken by two independent reviewers. Findings will be collated and reported thematically based on domains in the Consolidated Framework of Implementation Research (CFIR). The Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for scoping reviews (PRISMA-SCr) will be used to report findings.

Results and Findings: We are currently at the phase of searching, screening, and selecting articles to be included. The outcomes of this scoping review include synthesized literature regarding barriers and facilitators affecting the implementation of social robots, and variants in terminologies used to describe "implementation". Research gaps will be identified to guide further empirical research in this field. This evidence synthesis constitutes part of a bigger project aimed to develop implementation guidelines for social robotics for people with dementia.

PO1.21. Promoting the adoption of wearable GPS technologies in dementia care: key lessons from focus group interviews with business, research and healthcare professionals

FREIESLEBEN Silka Dawn, ROESCH Christina, MEGGES Herlind, PETERS Oliver

Charité – Universitätsmedizin Berlin, Memory Clinic and Dementia Prevention Center, Berlin, Germany

Objective: Wearable global positioning system (GPS) technologies can aid persons with dementia (PwDs) to remain independent longer by helping manage orientation impairments. However, they are underused in dementia care. Information on barriers to adoption, product-service requirements and marketing strategies from a broad multi-actor perspective is limited, particularly from business professionals.

Methods: We conducted a mixed-methods, focus group interview study with 22 professionals from business, healthcare and research fields. Topics ranged from examining in-depth thoughts on product requirements (design and functions), barriers to adoption, product-service requirements and marketing strategies. Also, product testing was performed to simulate real-life user experience and to supplement discussion insights. Thematic analysis was performed. Quantitative data included demographics, experience with dementia and assistive technologies (years), pay willingness for a GPS watch (once/per month), the technological affinity scale for electronic products (TA-EG; range 19-95), and the ISONORM 9241/10 scale (range 0-210).

Results: Professionals’ mean age was 42 years (SD=11.5), almost half were male (45.5%), and approximately half had five or more years experience with dementia (54.5%) and assistive technologies (45.5%). Analysis of quantitative data revealed no significant group differences. Five main themes on barriers to adoption emerged: (1) awareness and experience, (2) technical limitations, (3) unclear benefits, (4) data security and (5) product pricing. Business professionals also reported on legal aspects, capital investment limitations, and the mismatch between end-user needs and available products. Business and healthcare professionals further reported on unsatisfactory aesthetics. Several product-service requirements (e.g., technical assistance and innovative charging options) and marketing strategies (e.g., trial phase testing and involvement of respected institutions) were discussed.

Conclusion: Our results provide a multi-actor, qualitatively rich picture on the barriers to adoption of wearable GPS technologies in dementia care and present possible product-service and marketing solutions to address these limitations. Business professionals provided insights largely overlooked in the existing literature.

PO1.22. Impact of assistive technologies on cognitive decline among senior mild cognitive impairment patients

VOICU Andrei1, SPIRU Luiza1, MARZAN Mircea1, PATERNO Fabio2, MANCA Mario2, BANAJ Nerisa3, DICK Maximilian4

1Ana ASLAN International Foundation, Bucharest, Romania, 2Consiglio Nazionale delle Richerche, Pisa, Italy, 3IRCCS Santa Lucia Foundation, Rome, Italy, 4Bartenbach GmbH, Aldrans, Austria

Introduction: Mild Cognitive Impairment (MCI) describes an intermediate stage between physiological aging processes and dementia, often a transitional state, but not always - the 32% rate of progression to dementia was the aspect research has focussed more on. The Personalizable assisTive Ambient monitoring and Lighting (PETAL) Project represents a unique and innovative solution that aims to reduce the cognitive decline among MCI patients through an assisted ambient environment and use of neurocognitive stimulation applications.

Materials and Methods: PETAL involves an ongoing prospective observational study based on 2 field trials, the 2nd currently being in progress. In the first one, 6 patients from 2 countries (Romania and Italy) were enrolled. Patients underwent a cognitive and functional assessment before and after the trials – MMSE Test, Verbal Fluency, Rey’s Figure and Auditory Verbal Test. Quality of life was assessed through QoL-AD, ADL and iADL scales while psychiatric manifestations through Neuropsychiatric Inventory (NPI). 

Results: Patients were 2 males and 4 females, age between 76 and 83 with a median of 80.5 years. Cognitive evaluation showed 1.375 points (25.6%) increase in MMSE Test, 2 points (15.38%) increase in Verbal Fluence and 1.75 (13.33%) increase in Semantic Fluence. Quality of life recorded 0.25 points (4.35%) increase on ADL and 0.625 points (9.72%) on iADL. NPI results revealed: depression – 0.6 points (35.71%) drop in frequency and 0.125 points (16.67%) in severity; sleep - 0.625 points (33.33%) drop in frequency and 0.25 points (22.22%) in severity. 

Discussions and Conclusions: Patients showed a slight increase in neurocognitive functions, quality of life as well as neuropsychiatric symptoms. Increase in verbal fluence test score is perhaps one of the most promising results. This system also helped in consolidating patient independence by increasing quality of life. However, further and larger studies should be conducted. 

PO1.23. The potential of augmented reality services for assisting activities of daily living in dementia care

PALETTA Lucas1, TATZER Verena C.2, SCHÜSSLER Sandra3, GLEIXNER Günther4, GÄRNER Dominik4, STEINER Josef5, GINDL Sophie5, VOITHOFER Claudia3, LIN Simon6, ANDREU Jean-Philippe1

1JOANNEUM RESEARCH Forschungsgesellschaft mbH, Graz, Austria, 2Fachhochschule Wiener Neustadt, Wiener Neustadt, Austria, 3Medical University of Graz, Graz, Austria, 4ar:met GmbH, Graz, Austria, 5Sozialverein Deutschlandsberg, Deutschlandsberg, Austria, 6Symptoma GmbH, Salzburg, Austria

The increased demand for health services in dementia means a gap in the provision of care by nursing and health professionals. People in the early stages of dementia live mainly at home. One of the most important tasks is to promote the independence and intrinsic capacity of people with dementia to live as long as possible at home, taking into account the stage of dementia and individual abilities.

The AR-Demenz research project investigates Augmented Reality (AR) assistance technologies with the intention of supporting goal-oriented self-efficacy and thus an autonomous, as independent as possible life for people with dementia living at home. The focus is on assessing the application potential of AR-supported platforms (smartphones, tablet PCs, increasingly miniaturized data glasses) which open up new interaction potentials and are outstandingly suited for intuitive operation and assistive functions.

We present first results from our research about the dimensions of necessary requirements involving different groups of actors, such as, people with dementia, relatives, nursing staff, occupational therapists, experts from information technology, geriatrics and psychology, dementia-friendly communities. We outline relevant application scenarios in AR-supported accompaniment in activities of daily living, such as using remote assistance technology by people with dementia, there relatives and health care staff for dressing, cooking and communication. Furthermore, we evaluate AR-based motivational activation including assessment of executive functions by means of 3D-interaction games that are inspired by ‘Tower-of-London’ and ‘Kitchen Task Assessment’. Finally, we present results from the first field study about the usability of these innovative components.

The key outcome of AR-Dementia is the evaluation of the potential of AR-assisted assistance to foster self-care, self-regulation, and activation for interventions. The definition of necessary framework conditions for technology, usability and resources is a fundamental basis for new assistance solutions with a large projection for future strategies in dementia care.

PO1.24. Facilitating palliative care for people with dementia: recognising signs and symptoms of end stage dementia

HENRY Gayle

Dementia Service Development Centre, Stirling, United Kingdom

Appropriate management of advanced dementia requires understanding that it is a life limiting condition without curative treatment, interventions should be chosen carefully ensuring improvement or maintaining quality of life without burdensome interventions (Kumar & Kuriakose, 2013).  Evidence indicates palliation is not undertaken due to lack of recognition the person with dementia’s condition is deteriorating, lack of staff confidence and systemic barriers.  The clinical features of end stage dementia are not always recognised by clinicians leading to sub-optimal end of life care (Potter, Fernando & Humpel, 2013).

Dementia begins by affecting the brain often progressing to affect the whole body, changing focus from active medical treatment to palliative care although literature recognises it is difficult to provide accurate estimation of life expectancy.  Dementia may have a prolonged decline with severe disability (Van der Steel, 2014), dementia specific palliative care strategies require consideration of co-morbidities and managing behavioural problems possibly manifesting due to unmet physical needs (James & Jackman, 2017). 

Clinicians require abilities to anticipate, assess and manage physical and cognitive problems, facilitate communication with the person with dementia also families and/or carers allowing opportunity for support and preparation.  Knowledge of the clinical signs and symptoms of deterioration can assist in addressing end of life issues effectively although Palliative and End of Life care for individuals with dementia is often longer than with other chronic conditions a tool to guide staff may be of benefit.

As part of a research project undertaken in Australia in 2013 to identify signs and symptoms of end stage dementia a care plan was devised to assist carers in recognising deterioration and respond effectively.  This care plan was trialled in the intervention cohort and utilised by an aged care organisation. 

PO1.25. Feasibility and usability of smart-phone based experience sampling in people with MCI

BARTELS Sara Laureen1, VAN KNIPPENBERG Rosalie2, MALINOWSKY Camilla3, VERHEY Frans2, DE VUGT Marjolein2

1Maastricht University, Stockholm, Sweden, 2Maastricht University, Maastricht, Netherlands, 3Karolinska Institutet, Stockholm, Sweden

Background: Daily functioning of people with cognitive disorders such as mild cognitive impairment (MCI) is usually depicted by retrospective questionnaires, which can be memory-biased and neglect fluctuations over time. This study examines the feasibility and usability of applying the experience sampling method (ESM) in people with MCI to provide a detailed and dynamic picture on behavioural, emotional, and cognitive patterns in everyday life.

Methods: Twenty-one people with MCI used an ESM app on their smartphones for 6 consecutive days. At 8 semi-random timepoints per day, participants filled in momentary questionnaires on mood, activities, social context, and subjective cognitive complaints. Feasibility was determined through self-reports and observable human-technology interactions. Usability was demonstrated on an individual and group level.

Results: Three participants dropped out as they forgot the study instructions or to carry their smartphones. In the remaining 18 individuals, compliance rate was high with 78.7%. Participants reported that momentary questions reflected their daily experiences well. 71% of the participants experienced the increased awareness of own memory functions as pleasant or neutral. Subjective cognitive functioning showed great between- and within-participant variability.

Conclusion: This study found evidence for the general feasibility of smartphone-based experience sampling in people with MCI. Momentary data can increase the insights into daily pattern and may guide the development of self-management strategies in clinical settings. However, many older adults with MCI are currently not in possession of smartphones and study adherence seems challenging for a minority of individuals.

PO1.26. Causes and consequences of incontinence problems for people living at home with dementia

MURPHY Cathy, DE LAINE Christine

University of Southampton, Southampton, United Kingdom

Aim: Incontinence has a negative impact on the health and quality of life of both the person with dementia (PWD) and carers and can contribute to care breakdown. However, there are no evidence-based management interventions to support the incontinence needs of this population.  The first stage of intervention development is to fully understand the problem being addressed. Therefore, we aimed to characterise the causes and consequences of toilet-use and incontinence problems faced by PWD living at home and their unpaid carers.

Study design and methods:  Using a qualitative design, PWD, unpaid carers and healthcare professionals were interviewed with semi-structured topic schedules guiding conversations on their perceptions of the causes and consequences of toilet-use and incontinence problems for PWD living at home and their unpaid carers.  The interviews were transcribed and framework analysis used to interpret the data.

Results: 45 people (27 family carers, 2 PWD, 8 continence nurses and 8 dementia nurses) took part. The underlying causes and exacerbating factors of toilet-use and incontinence problems were multifaceted and complex, with six sub-themes identified: Dementia, physical, psychosocial (for either the PWD or the carer), societal, care system and containment product factors all played a role in either causing or exacerbating incontinence problems.  Similarly, the consequences of these incontinence problems are numerous, diverse and complex.  Context was important to understanding how individuals and dyads were impacted differently, for example the nature of their relationship (e.g. spouse or adult child).

Concluding message: This study, the first of its kind, provides detailed characterisation of the causes and consequences of incontinence problems for PWD living at home and their carers, identifying multifaceted and complex components, layering dementia, physical, psychosocial, societal and care system factors.  This new understanding provides the basis for the now underway development of practical and implementable interventions for this underserved population.

PO1.27. Making an impact in the third sector

HUHTALA Sanna-Kaisa

The Alzheimer Society of Finland, Jyväskylä, Finland

Muistiluotsi centres are provincial expert and support centres run by member associations of the Alzheimer Society of Finland. The Muistiluotsi centres form a network spanning the whole of Finland. In total, the 18 Muistiluotsi centres employ approximately 85 memory professionals. This national network is coordinated, steered, and monitored by the Alzheimer Society of Finland. The operations are funded by the Funding Centre for Social Welfare and Health Organisations (STEA). The network is the result of a long-term development commitment since 2006.

The work of the Muistiluotsi centres is based on their joint aims and quality promise. Muistiluotsi centres ensure that people with memory-related disease and their families can access:

  • enough information on the various forms of memory-related diseases,
  • guidance and counselling on the available services and support,
  • and have the opportunity to participate in activities intended to make their everyday life easier (e.g. in the development of various peer groups and courses).

As sources of expertise and support, the Muistiluotsi centres play an important role in developing knowledge related to memory-related diseases and safeguarding regional expertise.

A joint ERP-system has been developed to support the evaluation and development of the network's activities. The data collected on the organisations’ joint activities is transferred to the PowerBi analytics tool, which then makes it easy to monitor and evaluate these activities. The implementation of the network’s quality promise is monitored by the quality checklists built-in to the ERP-system, which are used to develop and monitor operations. The ERP-system also makes the work carried out by the entire network visible. Consequently, stakeholders are better able to understand the activities of the operators in this field. By leveraging the joint ERP-system, the Muistiluotsi centres are able to offer better and higher quality support for individuals and families affected by memory-related diseases than ever before.

PO1.28. DS-AGEING - cognitive training programme for healthy and well-ageing of people with Down Syndrome

L. ZLOBEC Štefanija, KRIVEC David, BASTARDA Maša, KEČKEŠ Polona

Spominčica - Alzheimer Slovenija, Ljubljana, Slovenia

DS-AGEING project (Erasmus+ KA2), aiming at improving well-ageing of persons with Down Syndrome with special regard on cognitive training, facing transition events, autonomy at ADL activities and social inclusion. Persons with Down Syndrome are more prone to premature ageing and cognitive decline soon after they turn 30 years old, so the likelihood ratio for them to develop young onset dementia, is quite high. In order to postpone first signs of dementia, they should be actively involved in cognitive simulative activities and actions.

Through the course of the project, consortium of 5 European countries (Spain, Romania, Greece, Portugal and Slovenia) enhanced and promoted competences (knowledge, skills, attitude) how to keep quality of life of PDS on one hand and cognitive resilience on the other hand. Project partners have developed educative training materials with templates for experiential activities, organized into 6 to 8 sessions per dimension. Each session consists of face-to-face session or practical/e-training activity with combination of exercises and tasks from real-life situations that will contribute to better daily functioning. To properly meet the needs of PDS, contents and structure of training materials were designed within co-creation sessions in collaboration with end-users and professionals.

Moreover consortium launched e-platform with useful references and resources on why issues with Down syndrome and mild cognitive impairment/dementia ought to be tackled together and not separately. E-platform is accessible at the following link: https://www.dsageing.eu/. As a project partner Spominčica-Alzheimer Slovenia brought a special attention how dementia affect cognitive process and what we should take info account when developing training materials for persons with cognitive decline. DS-AGEING project, that started in 2018 and ended in September 2020, offers an innovative training package for PDS and their caregivers or guardians, who complain about lack of productive educative materials for cognitive training of PDS who are over 30.

PO1.29. Interaction style and assistance given by carers of people with dementia during the performance of daily tasks. A novel observation scale

CAMINO Julieta1, BACKHOUSE Tamara2, KISHITA Naoko2, MIOSHI Eneida3

1University of East Anglia, Norwich, United Kingdom, 2Dr, Norwich, United Kingdom, 3Prof, Norwich, United Kingdom

Background: As people with dementia (PwD) progressively decline when performing daily tasks, family carers become the main providers of support. At times, carers provide more support than required, which could lead to PwD faster decline and carer exhaustion. Measuring reliably the assistance and interaction style used could lead to tailored interventions that promote function while reducing carer’s time providing assistance.

Objective: to develop an observational scale to measure interaction style and assistance given by carers during tasks.

Methods: fifteen PwD (Alzheimer’s disease) with family carers were video-recorded during the performance of a task - preparing a fruit salad- with carer support. To develop the scale, two researchers observed two video-recordings independently, made detailed notes of types of interaction and assistance present. These notes formed the basis of the tool (first iteration). The researchers then independently scored the same interactions and two new videos with the prototype tool. The tool was refined (second iteration) and used to score 13 new videos. These observed interactions were transcribed and 96 quotes were re-scored and cross-checked between the two researchers.

Results: A novel 21-item scale gathers information about interaction style and assistance given by the carer during task performance. Items on the scale comprise two main categories: communication-related-interactions and assistance-given-related-interactions. The scale also allows the observer to obtain information about the level of assistance requested by the PwD and the amount of supervision given by the carer while the task is completed.

Discussion: Using a novel observation scale to measure interaction style and assistance given by carers when PwD completing tasks can help to understand the support needed by the PwD as well as how much assistance a carer provides during tasks. Future interventions could target carers’ skills on how best to support PwD during task performance.

PO1.30. The added value of art for caregivers and artists and people with dementia living in nursing homes

BOERSMA Petra1, BOUMAN Margreet2, KERKVLIET Tanja2, VAN DER PLOEG Tjeerd3, GOBBENS Robbert4

1Inholland University of Applied Sciences, Amsterdam, Netherlands, 2Art in Education and Society, Scholen in de kunst [arts education centre], Amersfoort, Netherlands, 3Faculty Engineering, Design and Computer Science, Inholland University of Applied Sciences, Alkmaar, Netherlands, 4EANS, Faculty of Health, Sports and Social Work, Inholland University of Applied Sciences; Zonnehuisgroep Amstelland; Department of Primary and Interdisciplinary Care, Faculty of Medicine and Health Sciences, University of Antwerp, Amsterdam, Netherlands

Art plays an important role in the promotion of health and well-being for older people. Therefore, Schools of Art in Amersfoort, the Netherlands, has developed five art-based day-activities for older people with dementia and psychiatric diseases living in a long-term care-facility;(a) music and movement, (b) visual arts, (c) dance, (d) time slips and (e) theatre based on fantasy stories.The art-activities are developed and executed by artists and caregivers together. Two of the five art-activities are included in the present study, (a) music and movement and (b) visual arts. The aim of this study is to give insight into how art-activities influence the mood and quality of life of residents with dementia, and how the artists and caregivers collaborated in offering the cultural interventions. 

An uncontrolled pre- and post-test study was conducted using a mixed-method design. FACE (Whaley & Wong, 1987) was used to examine to what extent participating in the art-activity influences the mood of the residents. In addition, qualitative data were collected by means of group-discussions with artists and caregivers and one informal caregiver.

Sixteen residents participated in the study. Results showed that participating in an art-activity positively influences the mood of people with dementia (p=0.048 for music and movement;p=0.023for visual arts). The qualitative data revealed that joining an art-activity provides a positive affect, increases social relationships and improves the self-esteem of the residents. The collaboration between artists and caregivers stimulates creativity, they learned from each other’s expertise and together, they created beauty and evoked emotions.

This study demonstrated that arts has a positive influence on the well-being of older people with dementia; in addition, interprofessional collaboration had an added value for both, the artists and the caregivers.

PO1.31. Experiences of people with dementia and carers participating in a complex psychosocial intervention (CREST)

CASEY Dympna, SMYTH Siobhán, GALLAGHER Niamh, DOYLE Priscilla

National University of Ireland, Galway, Galway, Ireland

A dementia diagnosis can prevent people from participating in society, leading to a further decline in cognitive, social and physical health. However, it may be possible for people with dementia to continue to live meaningful lives and continue to participate actively in society if a supportive psychosocial environment exists. A pilot study was conducted to determine the feasibility and acceptability of a multifaceted complex resilience-building psychosocial intervention for people with dementia and their carers living in the community. Outcomes assessed the feasibility and acceptability of all study processes and this paper will report specifically on the intervention content and delivery.

Preliminary results indicate that participants (people with dementia and carers) enjoyed the content of the CREST intervention, that the delivery method and timing worked well and overall found the programme beneficial. Carers reported that the educational programme provided them with valuable information which was accessible and easy to understand. However, the group activities and learning from each other was identified as crucial to their enjoyment and learning. People with dementia enjoyed the Cognitive Stimulation Therapy (CST) and exercise components, some reporting that the CST enhanced their concentration and that exercising with an exercise partner was more sociable and enjoyable.

Evidence from participants indicates that the manualised intervention content and delivery methods of CREST were feasible and acceptable to carers and people with dementia in the community.

PO1.32. Exploring the feasibility of a complex psychosocial intervention (CREST) for people with dementia and carers

DOYLE Priscilla, GALLAGHER Niamh, SMYTH Siobhán, CASEY Dympna

National University of Ireland, Galway, Galway, Ireland

Pilot studies are essential in assessing the acceptability and feasibility of interventions and study protocols in order to avoid the cost of failed trials. Ten people with dementia and their primary caregivers living in the community were recruited and received the complex psychosocial CREST intervention. This paper reports on the recruitment strategies and the feasibility and acceptability of the secondary outcome measurement tools (completed pre- and post-intervention). Recruiting participants was difficult, with local community organisations/groups proving a more successful strategy than using GP practices. Researcher time required for recruitment and data collection were recorded, alongside participant barriers for non-participation. The time required for recruitment was targeted at five months, however this had to be extended to eight months. The participant information leaflet and consent form were reported to be informative and easy to understand, thereby assisting recruitment. In particular, value was placed on face-to-face meetings with researchers, accessibility to the research team, and reminder letters and follow up phone-calls.

The secondary outcome tools included; Quality of Life-Alzheimer’s Disease, Mini Mental State Examination, Geriatric Depression Scale, Stigma Impact Scale, Positive Psychology Outcome Measure and the EQ-5D-5L. Caregivers completed; Zarit Carer Burden Interview, Short Sense of Competency Scale, Dementia Knowledge-20, Resource Utilization in Dementia and the Adult Carer Quality of Life. People with dementia preferred the tools to be administered while carers preferred to self-complete. Most carers and people with dementia rated the tools as easy to complete and on average completed them within the recommended time, with exception of the Stigma Impact Scale, which some people with dementia found challenging.

This feasibility data will help to optimise recruitment to a future RCT trial and confirms the acceptability of the secondary outcome measures.

PO1.33. Seen as a person: digital art promoting social interaction between dementia residents, families and carers

TAN Josephine Rose1, BOERSMA Petra2, AEGERTER Laurence3, ETTEMA Teake1, STEK Max4, GOBBENS Robert2, DRÖES Rose-Marie1

1Amsterdam UMC, location VUmc, Department of Psychiatry, Amsterdam, Netherlands, 2University of Applied Sciences, Inholland, Amsterdam, Netherlands, 3Visual Artist, Amsterdam, Netherlands, 4Regional Mental Health Organisation GGZ inGeest, Department of Old Age Psychiatry, Amsterdam, Netherlands

Viewing of artistic photos have been found to enhance the engagement of persons with dementia in meaningful interactions, thus improving their social health and quality of life. Still, there is a lack of such psychosocial interventions for people with more advanced dementia in nursing homes. In a recent small-scale pilot study, we (Theijsmeijer et al., 2018) explored the effects of a person-centred, photo-activity using different kinds of artistic photos on people with moderate to severe dementia in nursing homes. The experimental group was shown person-oriented photos (related to their personal interests, inventoried via informal caregivers) while the control group was shown non-person-oriented photos. Although no statistical significant differences in degree of social interaction and mood were found, calculation of effect sizes showed that person-oriented photos seemed to have a more positive impact on these outcomes (moderate to large effect sizes). It is possible that no significant differences were found due to the study’s small sample size.

The current study builds upon Theijsmeijer et al.’s (2018) findings. It aims to develop a digital version of the photo-activity intervention, to investigate its impact on social interaction, mood and quality of life of people with advanced dementia in nursing homes, and to investigate the intervention’s impact on person-centred attitude and sense of competence in (in)formal caregivers. The intervention’s feasibility and effectiveness will be investigated through a randomised controlled trial involving 150 nursing home residents with dementia and their (in)formal carers, with three measurements (before/after 3-months intervention, and follow-up). A process analysis will determine the facilitators and barriers to the intervention’s implementation. It is expected that the residents will feel acknowledged as a unique person with their own experiences, while their caregivers will develop a more person-centred attitude.

This study is funded by the EU and will be conducted within H2020-MSCA-ITN-2019 (DISTINCT; 813196)

PO1.34. Building a realist programme theory for a novel multi-sensory intervention: a mixed-methods approach

D'ANDREA Federica1, TISCHLER Victoria2, DENING Tom3

1University of West London, London, United Kingdom, 2School of Nursing, Midwifery and Healthcare, University of West London, Brentford, United Kingdom, 3Division of Psychiatry & Applied Psychology, School of Medicine, University of Nottingham, Nottingham, United Kingdom

Multi-sensory intervention is a sensory stimulate approach that has received great interest within the field of dementia treatment, particularly for the management of responsive behaviours. The encouraging results on handling objects activities and the unique relationship between olfaction, memory, and emotion, prompts the interest to develop a multi-sensory intervention (MSI), using olfactory, tactile, and visual stimulation for people with dementia living in care homes.

The Medical Research Council guidelines for the development and evaluation of complex intervention recognises the need to optimise complex interventions by building underlying intervention theory and mechanisms prior to full trial. This knowledge produces critical information to increase the likelihood of successful intervention delivery and implementation. The current study describes a phased approach to data collection and analysis used to define and refine the components and intended mechanisms of action of MSI; specifically understanding in what ways MSI works, how optimum outcomes are achieved, and how contexts influence the outcomes.

A mixed-method, multi-stakeholder study was designed within a realist evaluation conceptual framework. This included the development of an initial programme theory by scoping the literature and qualitative data gathered from interviews with academic experts and healthcare professionals. A realist synthesis of the literature and a modified Delphi panel approach with a healthcare professional, informal caregivers, and academic experts will be used to refine and test the programme theory.

The presented study supports the development of a theory-driven novel intervention for people with dementia and offers an important contribution to the growing literature on methods to improve intervention design and reduce implementation failure.

PO1.35. The golden thread- Montessori Based Programming in dementia care

TISCHLER Victoria, RAGHURAMAN Shruti

University of West London, London, United Kingdom

Montessori-Based programming (MBP) is an educational approach promoting learning, care and quality oflife that has been developed for use with people with dementia, mainly in the USA, Canada and Australia. MBP aims to support people with dementia to be as independent as possible, to promote their belonging and self-esteem, and to enable the person to make a meaningful contribution to their community. 

Due to the lack of researchin the UK, an exploratory qualitative study with 8 stakeholders aimed to investigate current use of MBP and challenges and barriers to its implementation. Thematic analysis was used to analyse data from semi-structured interviews. 

The findings identified positive outcomes such as enabling independence of people with dementia by emphasizing strengths and promoting abilities, and facilitating meaningful engagement, for example tasking residents with roles related to their previous employment or interests. Good practice in implementing MBP resulted in changes to the culture within care settings and enhanced job satisfaction across all staff groups. Barriers to implementation included a lack of knowledge and understanding of MBP, for example as an approach that is beneficial to adults. A lack of training, resources and support including empirical evidence signified additional barriers to further development and use of MBP in the UK. The findings were used to develop a detailed thematic framework to map the current use of MBP in the UK. This framework provides guidance for future researchers and practitioners on the study and implementation of MBP in dementia care.

PO1.36. The social impact of participating in sport for people living with dementia

MACRAE Rhoda, MACRAE Eilidh

University of the West of Scotland, Hamilton, United Kingdom

Inclusive and modified sport promotes opportunities for participation often for older people or people with disabilities, physical and or mental health issues.  Walking sports, a form of modified sport, often with a focus on people over 50 years, are designed to support people to engage in physical and social activity. We will present the findings of a qualitative study that explored how walking football sessions were designed and delivered for people living with dementia. The study illuminates the social impact of participation and demonstrates the ways people living with dementia can have agency and strong embodied identities. We also propose best practice recommendations for those organising the increasing number of modified sports activities being offered for older people living with dementia.

PO1.37. Physical and mental wellbeing during the Covid-19 crisis

BURGUI Diana

Dementia Services Information & Development Centre, Dublin, Ireland

The Covid-19 pandemic has brought much hardship and suffering to our communities. People with dementia and their caregivers and families have been particularly badly affected, whether they are residing in nursing homes or in their own homes. For those living at home the results of a recent survey highlighted that loneliness, boredom and anxiety are particularly prevalent and that there was an increased need for alternative supports for people with dementia, carers and families. (Covid-19: Impact & Need for People with Dementia and Family Carers, Alzheimer Society of Ireland report, 2020)

In response to the COVID-19 crisis, the Dementia Services Information and Development Centre (DSiDC), working collaboratively with the Health Service Executive and the Alzheimer Society of Ireland, developed a collection of online information resources. These information leaflets are divided into sections that address the medical, practical and emotional aspects of living with Covid-19 and dementia.

They are designed to respond to the needs of people with dementia, carers and families and cover the themes of gardening, exercise, music, the arts and museums, lifestory, reminiscence, video calling and cocooning. They provide practical advice and links to verified resources to help people keep physically and mentally active during the Covid-19 crisis and to minimise or prevent emergent non-cognitive symptoms of dementia (NCSD). The leaflets have been well received and have been widely shared in social media networks and publicised by other institutions worldwide.

The leaflets are based on research evidence from a 2019 DSiDC guidance document commissioned by the Irish National Dementia Office (NDO). The guidance, aimed at  healthcare professionals, focused on the effectiveness of non-pharmacological interventions for people who were experiencing NCSD. This document was designed to accompany new national clinical guidelines for physicians on the appropriate prescribing of psychotropic medication for non-cognitive symptoms in people with dementia (DoH, 2019). 

PO1.38. Use of social media and virtual gathering to face Covid-19 outbreak among persons with dementia and their carers

D'ANASTASIO Clelia1, RIBANI Valeria1, BARBANI Elisa1, QUARTINI Ilaria1, RANÙ Maria1, SALMI Sandra1, ZAMBONELLI Cristina1, ASCOLESE Andrea2

1ARAD-Associazione Ricerca Assistenza Demenze, Bologna, Italy, 2Professional performing artist, Bologna, Italy

Covid-19 pandemic officially broke out in Italy on February 21st, figures up to May 10th indicate 218.000 infected and 30.395 deceased. Mean age of deceased persons was 80 yrs, women representing 39,1%. Median age of those who died was 20 yrs higher than infected survivors.   Elderly and fragile people being the most vulnerable, Meeting Centers, Alzheimer Cafès, initiatives promoting socialization among people with dementia and activities aimed to carers’ support had to close. This scenario proved to be a great challenge for everyone, including non-profit volunteers organizations as ARAD. We tried to make the best of a bad bargain and kept all our activities going, although at distance, using virtual facilities. Thanks to electronic thecnology, our psychologists carried on carers’ support through Skype meetings or telephone calls, various WhatsApp groups share daily life events, emotions and practical ideas to overcome this difficult time. ARAD runs two Alzheimer Café in Bologna and one in a nearby town; using virtual meetings all the steps of an usual Café could be mantained: the welcoming greeting, the singing wich helps each partecipant to introduce him/herself, plays (a modified game of goose where players are asked to perform simple tasks, food games, etc.), performances (pretending to leave by an imaginary train...). Memory training sessions for persons at risk of isolation were issued through videos prepared by our psychologists, while those with manifest cognitive decline could benefit of personalized videos from our Validation Therapy teacher.  Psychologysts and a professional performing artist guided creative narration and performances by carers who shared their productions on the computer screen. For persons with dementia and for caregivers, physical contact and empathic communication are of paramount importance and lockdown due to Covid-19 pandemia caused overwhelming strain wich, partially and temporarly, has been eased by solutions unthinkable in usual times.

PO1.39. The potential utility of acceptance and commitment therapy for informal caregivers of people with dementia: a systematic review

ATEFI Golnaz1, ATEFI Golnaz2, BARTELS Sara Laureen2, KILKENS Tessa3, VERHEY Frans2, DE VUGT Marjolein2

1The University of Maastricht, Maastricht, Netherlands, 2Department of Psychiatry and Neuropsychology and Alzheimer Centre Limburg, School for Mental Health and Neurosciences, Maastricht, Netherlands, 3MET ggz Maastricht, Maastricht, Netherlands

Objectives: Acceptance and Commitment Therapy (ACT) is a constructive approach to psychotherapy that focuses on psychological flexibility (PF), improving function and behavior change rather than symptom reduction. Informal caregivers of people with dementia (PWD) often experience challenging situations due to their role and applying ACT may support their coping skills in everyday life. To date, however, the use of ACT approach among this population seems rare. This systematic review will examine the feasibility, clinical effectiveness, quality of evidence, and mechanisms of change in ACT interventions for various informal caregivers populations.

Method/Design: The protocol of this review is registered on Prospero. A systematic search of five online databases was conducted to find studies investigating ACT interventions in informal caregivers. Overall 1670 articles have been identified. Studies will be included when they are (i) published, (ii) written in English, (iii) focused on informal caregivers of adult, and (iv) ACT intervention in any form (e.g. in person, online). The quality of included studies will be determined using the GRADE tool. Results will inform on the context, mechanisms, and outcomes and be synthesized to identify key components.

Discussion: Although study quality may vary, results are expected to inform on the feasibility of ACT and potential benefits for informal caregivers. Special attention will be paid to PF as a mediator of distress, depression, and anxiety. Findings of this study will provide a useful overview of the utility of various ACT interventions that have been conducted for informal caregivers. This knowledge will be beneficial for researchers, clinicians, and policy makers in order to enable the most appropriate ACT intervention for informal caregivers of PWD. An ACT intervention for informal caregivers of PWD will be designed and piloted followingly. Full results will be presented in detail in the conference session.

 

 
 

Last Updated: Tuesday 30 June 2020

 

 
  • Acknowledgements

    The 30th AE Conference received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe gratefully acknowledges the support of all conference sponsors.
  • European Union
  • Roche
 
 

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