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PO2. Home and residential care

Detailed programme and abstracts

PO2.1. Depressive symptoms among the oldest-old in Portuguese nursing homes: Unravelling the role of unmet needs

FERREIRA Ana Rita1, FERNANDES Lia1, GUEDES Joana2, SIMÕES Mário3

1Faculty of Medicine, University of Porto, Porto, Portugal, 2Higher Institute of Social Work of Porto, Porto, Portugal, 3Faculty of Psychology and Educational Sciences, University of Coimbra, Coimbra, Portugal

Introduction: Depression is among the most common mental disorders in late-life.  Particularly, nursing homes (NH) older adults are at increased risk of depressive symptoms. However, depression is still poorly recognized and under-treated. NH-based studies on depression risk factors are needed.

Aims: To compare unmet needs among NH depressive and non-depressive oldest-old, and to explore the association between unmet needs and depressive symptoms, adjusting for other risk factors.

Methods: A cross-sectional study was conducted. Oldest-old NH residents were included (age≥80). Those with concomitant major psychiatric diagnosis (e.g. schizophrenia) were excluded. Depression and unmet needs were assessed with Geriatric Depression Scale-GDS-15 and Camberwell Assessment of Need for the Elderly-CANE, respectively. Mini-Mental State Examination-MMSE and Adults and Older Adults Functional Assessment Inventory-IAFAI were used to assess cognitive and functional impairment. Regular drugs were also registered. Group differences were analysed (depressive vs. non-depressive), and a logistic regression was conducted to explore factors significantly associated with depression, adjusting for age, gender, unmet needs, MMSE, IAFAI and regular drugs.

Results: Overall, 128 residents, mostly women (83.6%) with a mean of 86.8 (sd=4.6) years, were included. A mean of 21.6 (sd=5.8) was scored on MMSE, with more than half of residents (52.3%) scoring for depression. On average, 3.6 (sd=1.9) unmet needs were found, being depressed oldest-old significantly more likely to present unmet needs related to “daytime activities” (p=0.001), “psychological distress” (p<0.001), “company” (p<0.001), “intimate relationships” (p=0.003), “eyesight/hearing/communication” (p=0.036) and “mobility/falls” (p=0.027). In multivariate analysis, unmet needs (OR=2.64; 95%CI:1.784-3.903) and gender (OR=4.95; 95%CI:1.345-18.240) showed a significant independent association with depression.

Conclusions: Unmet needs significantly contributed to depression, being gender other significant risk factor. Results suggest that CANE may be used to identify modifiable risk factors for depression among NH oldest-old, allowing the implementation and prioritization of areas of care. 

Supported by: FCT_(PD/BD/114555/2016), ERDF operation/POCI-01-0145-FEDER-007746 funded by COMPETE2020, National Funds through FCT within CINTESIS/R&DUnit (ref.UID/IC/4255/2013).

PO2.2. Advanced dementia: Upholding dignity in undignified lives

VAN DER GEUGTEN Wendy1, GOOSSENSEN Anne2

1Careyn, Spijkenisse, Netherlands, 2Informal care and Care ethics, University of Humanistic Studies, Utrecht, Netherlands

The deterioration of cognitive and physical functioning makes persons with dementia gradually dependent on others. The care for them may answer to their increased vulnerability in order to preserve their dignity. In the Netherlands around 70.000 persons with dementia reside in nursing homes in which formal and informal caregivers play an important role in providing care answering to their needs.

A narrative review was performed, aiming to synthesise dignifying and undignifying aspects of care for persons with dementia during their disease trajectory and within the nursing home. The search and selection process was structured by the PRISMA framework (Moher, 2009). The databases CINAHL, SCOPUS, PSycInfo and Pubmed were searched with the terms ‘dementia’ and ‘dignity’ and 789 unique items were found. Based on eligibility and after a methodological check using the critical appraisal tool from Hawker (2002), 29 articles were included. These were reviewed with the help of the guidelines for narrative synthesis by Popay et.al. (2006).

The overarching theme of “grasping and recognising uniqueness” emerged, meaning that dignifying care for persons with dementia acknowledge and strengthen their uniqueness. Therefore, a continual tuning in is required due to the progressive nature of the disease. In contrast, undignifying aspects of care reduce the uniqueness of the person with dementia through stigmatization, estrangement and misunderstanding. These processes especially threaten dignity in persons with severe dementia. Lack of reciprocity in the care-relation and diminished conversation and communication skills increase their vulnerability towards undignifying care practices. Within some empirical studies the stage of advanced dementia, ‘when nothing is left but a degenerated self’, is perceived as dehumanizing and undignifying. In this stage, grasping and strengthening uniqueness is challenging. In addition, this might be complicated by organizational structures, work pressure and caring for persons with different stages of dementia demanding different care needs.

PO2.3. Implementing the Family Carer Decision Support (FCDS) intervention to improve end of life care in care homes: Planning a transnational effectiveness-implementation study

BRAZIL Kevin1, KAASALAINEN Sharon2, SUSSMAN Tamara3, T. VAN DER STEEN Jenny4, CORNALLY Nicola5, HARTIGAN Irene5, LOUCKA Martin6, DI GIULIO Paola7

1Queen's University Belfast, Belfast, United Kingdom, 2McMaster University, Hamilton, Canada, 3McGill University, Montreal, Canada, 4Leiden University Medical Center, Leiden, Netherlands, 5University College Cork, Cork, Ireland, 6Center for Palliative Care, Prague, Czech Republic, 7University of Turin, Turin, Italy

The Family Carer Decision Support (FCDS) intervention has been designed to inform family carers about end of life care options available to a person living with advanced dementia.  The FCDS intervention demonstrated a statistically significant impact in reducing family carer decision uncertainty on establishing goals of care at the end of life and, improved family carer satisfaction on quality of care in a study conducted in the United Kingdom.   

Funding supported through the EU Joint Programme – Neurodegenerative Disease research (JPND) project has supported the scaling up of the FCDS transnationally in the United Kingdom; Republic of Ireland; the Netherlands; Canada; Czech Republic; and, Italy.

The aim of this research is to adapt the application of the FCDS for use in different countries. Expected project  outcomes of this work will include a) develop guidelines to facilitate transnational use of the FCDS within care homes; (b) staff education material including web learning resources; (c) family carer informational material including web learning resources; (d) measures and tools to evaluate the uptake and outcome of the FCDS intervention; (e) establish a transnational FCDS community of practice across study care homes; (f) estimated costs of providing the FCDS intervention; (g) evidence of enhancing decision making among family members regarding resident care and satisfaction with care.

Launched in April 2019, this presentation will report on present activities including: a) description of the FCDS intervention; b) strategy for implementing the FCDS in care homes; c) study design employed for the evaluation of the FCDS; and d) work packages and that will be deployed to achieve intended outcomes.

PO2.4. Designing gardens for people with dementia: Conception and application of an evidence-based conceptual frame

CHARRAS Kevin1, LAULIER Véronique2, MABIRE Jean-Bernard1, AQUINO Jean-Pierre1

1Fondation Médéric Alzheimer, Paris, France, 2Ecole Nationale Supérieure de Paysage, Versailles, France

More and more dwelling facilities for people with dementia invest gardens as convivial, resourceful, and relational places. However, there is a demand for scientific evidence of such statements. In addition, conception and construction of nursing homes focuses mostly on architectural design. The cost of gardens and amount of work they require is usually underestimated. This often results in inaccessible, unfit and poorly designed outdoor spaces. On these accounts, we decided to proceed to a study in two steps:

A first step consisted in enlightening scientific evidence concerning uses and therapeutic virtues of gardens for people with dementia, and to conceive a conceptual frame to design gardens for people with dementia based on the grounds of existing models. We used an evidence-based design approach for which we identified key dimensions of garden design and related them to scientific evidence. In this perspective, we processed to a literature review for which we selected 22 articles. Six environmental design clusters were identified. These clusters are discussed in a conceptual frame using an approach based on use of space.

A second step of this work consisted in applying the conceptual frame to an existing garden project. The application of the conceptual frame led to a partnership between three French institutions established in response to the needs of people with dementia living in care facilities. The common objective was to provide dementia-friendly outdoor spaces. This partnership added a pedagogical and a practical dimension to the initial scientific approach we had implemented. People wwith dementia, families, care staff and town services actively took part in this project. Results of garden designs from this fruitfull partnership will be presented.

PO2.5. Are Intermediate Care bedded units dementia friendly? Sharing best practice across Sheffield care homes

BROWN Jodie

NHS, Sheffield, United Kingdom

Background: Intermediate care in Sheffield, UK, is offered to those patients who are medically fit for discharge from acute services but require further assessment and rehabilitation prior to discharge. These services in Sheffield are delivered in private sector care homes. Approximately 1% of our patients have a diagnosis of dementia or cognitive impairment.

Aims: The project aimed to assess and evaluate how dementia friendly the intermediate care environment is in Sheffield using a validated assessment tool.

Methods: The 4 intermediate care bedded units in Sheffield were visited and assessed by the researcher using the King’s Fund, “How dementia friendly is your care home?” tool. From this assessment reports with findings and recommendations were compiled and shared with stakeholders in the units to implement changes as able. The findings from the literature review were also collated into a leaflet and shared across all care homes in Sheffield with a hope that this could improve the environment for people living with dementia in these settings.

Results: The results were very positive overall. The mean percentage to comply with the King’s Fund assessment criteria was 71.5%. The main area requiring most improvement across the homes was continence and hygiene with a mean score of 58.5%. Orientation was another area that would benefit from improvement for residents/patients.

Conclusion: The environmental assessments have highlighted several areas that can be improved within the intermediate care environments and care homes generally. Simple changes could lead to improvements for people living with dementia.

It is hoped this information will improve the care home environment for future people living with dementia and improve understanding amongst the care home staff. 

PO2.6. Sentinel events and quality of dying of nursing home residents with different status of dementia

MIRANDA Rose1, VAN DER STEEN Jenny T.2, SMETS Tinne1, DELIENS Luc3, VAN DEN NOORTGATE Nele4, PAYNE Sheila5, KYLÄNEN Marika6, SZCZERBIŃSKA Katarzyna7, GAMBASSI Giovanni8, VAN DEN BLOCK Lieve1

1End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University & Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel (VUB), Brussels, Belgium, 2Department of Public Health and Primary Care, Leiden University Medical Center & Amsterdam UMC, Vrije Universiteit Amsterdam, Department of Public and Occupational Health, Amsterdam Public Health research institute, Expertise center for Palliative Care, A, Leiden, Netherlands, 3End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel (VUB) & Department of Medical Oncology, Ghent University Hospital, Ghent, Belgium,  4Department of Geriatric Medicine, Ghent University Hospital, Ghent, Belgium, 5International Observatory on End-of-Life Care, Lancaster University, Lancaster, United Kingdom, 6National Institute for Health and Welfare, Helsinki, Finland, 7Unit for Research on Aging Society, Department of Sociology of Medicine, Epidemiology and Preventive Medicine Chair, Faculty of Medicine, Jagiellonian University Medical College, Krakow, Poland, 8Fondazione Policlinico Universitario A. Gemelli IRCCS & Università Cattolica del Sacro Cuore, Rome, Italy

Background: Among nursing home residents, more than half have dementia. With dementia, sentinel events, such as pneumonia, febrile episodes (other than pneumonia) and intake problems frequently occur at the end-of-life. Yet, little is known about whether sentinel events are typical for dementia, and how these events relate to quality of dying of residents with different status of dementia.

Objective: To investigate prevalence of sentinel events, its association with quality of dying and whether associations differ between nursing home residents with advanced dementia, with mild/moderate/severe dementia and without dementia.

Methods: Cross-sectional after-death survey in nationwide representative samples of 322 nursing homes in Belgium, Finland, Italy, Netherlands, Poland and England. We identified all residents who died in the previous three months and had staff (nurse/care assistant) most involved in their care and the treating physician fill in structured questionnaires. Nursing staff reported sentinel events and assessed quality of dying using Comfort Assessment in Dying – End-of-Life in Dementia scale (CAD-EOLD; higher scores indicate better quality).

Results: The sample comprised 401 residents with advanced dementia, 377 with other stages of dementia and 419 without dementia. In all groups, pneumonia was negatively associated with quality of dying (advanced dementia, P=0.04; other stages of dementia, P=0.04; without dementia, P<0.001). Febrile episodes were negatively associated only with quality of dying of residents with other stages of dementia (P=0.004). Intake problems were negatively associated only with quality of dying of residents with other stages of dementia, P<0.001; without dementia, P=0.03. Indeed, dementia status modified the association between intake problems and quality of dying (P=0.03).

Conclusion: At the end-of-life, pneumonia relates to diminished quality of dying, irrespective of dementia status. In contrast, febrile episodes and intake problems were associated only to diminished quality of dying of nursing home residents with other stages of dementia and without dementia.

PO2.7. A Queens Nurse journey - Developing Namaste Care in practice

WYLIE Lesley-Ann

Erskine Park Home, Bishopton, United Kingdom

In 2018, I was awarded the Queen's Nurse title following a 9-month development program, during which I had to introduce an aspect of care which improved daily living for the Veterans and their spouses living with advanced dementia. Erskine Park Home has been providing care to Scotland's veterans since 1916, and through time there has been an increasing number of people moving in who are living with dementia or cognitive impairment. The Erskine is vibrant, there is a very full activities program and yet as I moved through the home, I noticed residents not engaging, being taken to activities but not reacting. They were the 'Silent Residents'. 37% of the residents living in the home fell in to this catagory.

I was aware of Joyce Simard's Namaste Care program and became interested in how I could introduce this to these Silent Residents. Dr Bill Thomas talks about the three plaques of dementia: Loneliness, Helplessness, Hopelessness I wanted to introduce care which lessened these emotions for our residents and those across the Erskine organisation. I could talk about strategy, about local, national and international policies but this is not what I wish to share with the conference. I want to share the experenice of the residents living with dementia, their families sharing in their dementia journey and the changes in staff approach and attitudes after I developed a training program on Namaste for staff and relatives and introduced Namaste care to Erskine. The Namaste training program has provided a method of care which prevents silence, it provides meaningful engagement until the very end of a person’s life. I am passionate about sharing the impact of Namaste care and my Queen's Nurse journey with others caring for people living with dementia.

PO2.8. An innovated approach in the treatment of patients at the onset of Alzheimer's disease:  Multi-specialist domiciliary service

COZZARI Maria Pia, DE VANNA Floriana

Social cooperative Anthropos, Giovinazzo, Italy

Purpose:  The multi-specialist domiciliary service promoted by Anthropos, a social cooperative based in Giovinazzo (Bari, Italy), is a new way of approaching Alzheimer's at the onset of the disease. The service provides an approach with the patient based on the concept of invisibility, in which each operator acts as a «background person» respecting each patient’s needs and time habits. The service aims at providing a "multi-specialist" (neurologist, psychologist, nutritionist, educator, physiotherapist) in a "timely" and "personalized" domiciliary service according to every single need. Each intervention program is built ad personam and is structured to honour each person’s resources. 

Conclusion: The multi-specialist domiciliary service is designed as an innovative service to meet the growing needs of the those affected by mild neurocognitive disorder (mNCD). While immediately recognizing the particular difficulties that can arise in the patient’s day to day activities, this service has concrete advantages for the patient, the family unit, and the National Health Service. Moreover, our service, which is already active at a territorial level, contributes to fostering prevention and raising awareness of the entire community with respect to the delicate issue of dementia. Our method was explained in the book published by Maggioli Editore (November 2017) entitled: “Alzheimer. Niente panico ma intervenire subito! L'attivazione di programmi agli esordi della malattia” (transl. “Alzheimer. Don't panic but take action immediately! The activation of programs at the beginnings of the disease”). The book is addressed to family members and professionals in the sector contains reflections and indications to implement an intervention in mild cognitive decline.

PO2.9. Problem behaviour in people with dementia from minority ethnic groups

BOSMA Corina1, SMITS Carolien2

1Carintreggeland, Hengelo, Netherlands, 2Research group Innovating with Older Adults, Windesheim University of Applied Sciences, Zwolle, Netherlands

Aim: In residential and home care, professional carers are caring for a growing number of people with dementia from minority ethnic groups. Carers aim to provide high quality care, also in case of behavioural problems of the person with dementia. Aim of this qualitative research is to gain insight in carers’ experiences concerning problem behavior and barriers and facilitators in providing high quality care to people with dementia from minority ethnic groups.

Method: Semi-structured interviews with twenty professional carers in home and residential care in an organization for health and social care in the eastern part of the Netherlands. Interview transcripts were analysed using open coding.

Preliminary Results: All respondents have experiences with problem behaviour in clients with dementia from minority ethnic groups. Respondents report a difference between problem behaviour caused by dementia and problem behaviour relating to cultural barriers. Relatives may exacerbate problem behavior by the great number of visitors. Respondents reported a variety of barriers in caring for these clients. The main barrier mentioned is language and communication with client or family. Problem behaviour occurs in the context of incomprehension and diverging views of dementia and good care. Respondents often feel incapable of managing problem behaviour, for example to offer comfort in clients’ own language. Respondents reported feelings like frustration and incompetency. When clients seem to feel at home at last, this offers great satisfaction to professional carers. Some carers expect that a special care unit for specific minority groups may facilitate optimal care.

Conclusion: Despite the fact that all respondents aim to provide good personal care, problem behaviour in people with dementia from ethnic minority groups may lead to frustration in both client, relatives and professional carers. Intercultural competencies and care may be helpful, but cultural specific care is also expected to improve quality of care.

PO2.10. Decision-making of nursing home staff when a person with advanced dementia 'unexpectedly' deteriorates

ALDRIDGE Zena

Dementia UK, London, United Kingdom

Care homes in the United Kingdom are either Nursing homes where there is 24-hour nursing provision or Residential care homes where there is 24-hour provision of social care but no provision of nursing care on site.

There are approximately 400,0000 residents in care homes in the UK, it is estimated that 311,730 have dementia with 180,500 living in residential care homes and 131,230 living in nursing homes (Prince et al 2014). 

The author is currently undertaking data collection in relation to her PhD study exploring the decision-making experiences of nursing home staff in the UK, when a person with advanced dementia deteriorates unexpected.  It has been identified that there is no research in the UK relating to this area of clinical practice.

Decision-making in relation to this cohort of residents is fraught with challenges due to the often complex and multifactorial medical and social care issues affecting people with advanced dementia in nursing homes.  Another complicating factor is if the person with dementia lacks the capacity to make or; to communicate their wishes within the context of the decision to be made.

Issues such as co-morbidities, advance care planning, family perspectives, prognostication, legal frameworks and local service provision, alongside the skills and knowledge of the staff can all influence this important area of care. Due to often poor-quality outcomes there is a growing propensity to reduce inappropriate admissions to hospital for people with advanced dementia, therefore, understanding some of the factors that may influence decision-making at a point of unexpected deterioration could support improved care and support for people with advanced dementia and their families.

This session will offer some preliminary findings from the study and seek to highlight this key issue. Some of the emerging data that may be influential for practice and policy will be discussed.

PO2.11. Respiratory function and upper limb functional ability in people with dementia: A shout for attention

ALMEIDA Sara1-2, PAIXÃO Cátia2, MARQUES Alda2

1Lab 3R – Respiratory Research and Rehabilitation Laboratory, School of Health Sciences (ESSUA), University of Aveiro, Portugal, 2Institute for Research in Biomedicine (iBiMED), University of Aveiro, Aveiro, Portugal

Background: Dementia is one of the main causes of disability and dependency in older people, leading to decreased lung function and ability to perform activities of daily living (ADL). Nevertheless, little attention has been given to the assessment of respiratory function in this population, and functional capacity studies have been focusing on lower limb when upper limb (UL) plays a key role in ADL performance.

Aim: This study aimed to characterise the respiratory function and UL functional ability of people with dementia (PwD).

Methods: An exploratory cross-sectional study was conducted with a total of 76 participants (46 (60.5%) female, 75.2±5.7 [62-88] years old and 26.5 [24.2-29.7] kg/m2); 22 institutionalised PwD (Addenbrooke’s Cognitive Examination-III [ACE-III] 40.8±17.7 points), 28 community-dwelling PwD (ACE-III 52.8±18.5 points) and 26 healthy older people (ACE-III 88.7±5.4 points). Lung function (Peak Expiratory Flow [PEF]), respiratory muscle strength (Maximal Inspiratory/Expiratory [MIP/MEP] and sniff nasal inspiratory [SNIP] pressures) and UL functional ability (Grocery Shelving Task [GST] were recorded. Descriptive statistics was used to characterise the sample. Comparisons among groups were explored using a One-way ANOVA.

Results were significantly worse in institutionalised than in community-dwelling PwD, and the values from these two groups were significantly worse than those from the healthy older people group, i.e., lung function (PEF: 183.8±69.8 vs. 280.2±72.1 vs. 411.5±115.5 L/min; p<0.001), respiratory muscle strength (MIP: 28.5±11.6 vs. 46.5±11.4 vs. 88±26.9 cmH2O, p<0.001; MEP: 46.7±27.2 vs. 71±22.4 vs. 122.4±27.4 cmH2O, p<0.001; and SNIP: 31.2±12.1 vs. 45.7±18.4 vs. 74.1±21.1 cmH2O, p<0.001), and UL functional ability (GST: 130.7±52.6 vs. 90±50.4 vs. 38.5±12 seconds, p<0.001).

Conclusions: This study showed that respiratory function and UL functional ability, in PwD, declines with worse cognitive function and institutionalisation. Awareness for respiratory and UL routine assessment in PwD is needed to guide personalised and early interventions. Future studies with larger and representative samples are recommended.

PO2.12. Relationship between upper limb functional ability and respiratory function in people with dementia

ALMEIDA Sara1-2, PAIXÃO Cátia2, MARQUES Alda2

1Lab 3R – Respiratory Research and Rehabilitation Laboratory, School of Health Sciences (ESSUA), University of Aveiro, Portugal, 2Institute for Research in Biomedicine (iBiMED), University of Aveiro, Aveiro, Portugal

Background: People with dementia often experience lower respiratory tract infections. It is also known that people with dementia present decreased functionality, namely in upper limbs. These two facts lead to higher level of functional dependence and institutionalisation in people with dementia. It is likely that impaired upper limb functional ability affects respiratory function but this association in people with dementia is unknown.

Aim: To explore the relationship between upper limb functional ability, lung function and respiratory muscle strength in people with dementia.

Methods: An exploratory cross-sectional study was conducted. People with dementia were recruited in nursing homes, day care centres, long-term care facilities and in the community. Upper limb functional ability (Grocery Shelving Task [GST]), lung function (Peak Expiratory Flow [PEF]) and respiratory muscle strength (Maximal Inspiratory/Expiratory [MIP/MEP] and sniff nasal inspiratory [SNIP] pressures) were recorded. Descriptive statistics was used to characterise the sample. Correlations were explored with the Pearson’s correlation coefficient.

Results: Fifty people with dementia [75.9±5.9 years old; 35 (70%) female; Body Mass Index=26.6±3.9 kg/m2] participated. GST was significantly: i) low and negatively correlated with SNIP (r=-0.49, p=0.002); and ii) moderate and negatively correlated with PEF (r=-0.58, p<0.001), MIP (r=-0.54, p=0.001) and MEP (r=-0.57, p=0.001).

Conclusions: Upper limb functional ability correlated significantly with lung function and respiratory muscle strength in people with dementia. Those with lower upper limb functional ability seem to present worst lung function and respiratory muscle strength. Thus, early detection and personalised interventions may prevent clinical and functional decline in this population. Further research on respiratory function and upper limb functional ability is needed to enhance knowledge on dementia management.

PO2.13. Lifestyle integrated Functional Exercise for people with Dementia - LiFE4D: Pilot study

ALMEIDA Sara1, DA SILVA Madalena2, MARQUES Alda1

1Lab 3R – Respiratory Research and Rehabilitation Laboratory, School of Health Sciences (ESSUA), University of Aveiro, Aveiro, Portugal; Institute of Biomedicine (iBiMED), University of Aveiro, Aveiro, Portugal; Department of Education and Psychology (DEP), Aveiro, Portugal, 2Interdisciplinary Centre of Health Applied Research, School of Health, Polytechnic Institute of Setúbal (ESS-IPS), Setúbal, Portugal

Background: People with dementia (PwD) want and are recommended to live at home. For this purpose, being physically active is vital. Nevertheless, home-based physical activity programmes for PwD are scarce. The Lifestyle Integrated Functional Exercise for People with Dementia (LiFE4D) might overcome this gap.

Objective: To explore the feasibility and effectiveness of LiFE4D on cognitive function and health-related physical fitness components in PwD.

Methods: A quasi-experimental pilot study was conducted with PwD living at home. The experimental group (EG) received 3-months of individualised home-based physical activity programme (LiFE4D), integrated in everyday tasks with the supervision of carers (when possible). Face-to-face sessions with the health professional were progressively reduced over time (1st month 3x/week, 2nd month 2x/week, 3rd month 1x/week). The control group (CG) continued with usual care (pharmacological treatment). Measures of cognitive function (Addenbrooke’s Cognitive Examination-III [ACE-III]) and health-related physical fitness (Brief-Balance Evaluation System Test [Brief-BESTest], Handgrip, 30-Second Sit to Stand Test, 2Minute Step Test, Chair Sit-and-Reach Test [CSR], Functional Reach Test [FRT] and Timed Up and Go test [TUG]) were assessed. Comparisons between mean differences of each group were performed with Kruskal Wallis.

Results: Twelve PwD (8♀ (66.7%), 80.7±7.2yrs) were enrolled. Although not significant, improvements were observed in the EG when compared with the CG on ACE-III (4.5 [1.2; 13]; 3 [-7; 7.5] points, p=0.810), Brief-BESTest (5.5 [2.8; 6.8]; -2 [-4.5; 2.5] points, p=0.126), 30-Second Sit to Stand (2 [0.2; 4.5]; 0 [-1; 0.5] times, p=0.162), 2Minute Step Test (29.5 [18.8; 40.2]; -8 [-20; -1.5] times, p=0.054), CSR (2 [-5; 6]; -5 [-13; -3.5]cm, p=0.081), FRT (4 [2.2; 11]; 0.9 [-5.5; 13]cm, p=0.347) and TUG (-2.1 [-9.5; 13]; 0.5 [-4; 11.3] seconds, p=1). No adverse events were reported.

Conclusions: LiFE4D seems a promising intervention to delay the decline of cognitive function and health-related physical fitness in PwD living at home and warrants further investigation.

PO2.14. Home-based physical activity for people with dementia: A systematic review and meta-analysis

ALMEIDA Sara1, DA SILVA Madalena2, MARQUES Alda1

1Lab 3R – Respiratory Research and Rehabilitation Laboratory, School of Health Sciences (ESSUA), University of Aveiro, Aveiro, Portugal; Institute of Biomedicine (iBiMED), University of Aveiro, Aveiro, Portugal; Department of Education and Psychology (DEP), Aveiro, Portugal, 2Interdisciplinary Centre of Health Applied Research, School of Health, Polytechnic Institute of Setúbal (ESS-IPS), Setúbal, Portugal

Background: Home-based physical activity interventions for people with dementia (PwD) are important for this population to live at home. However, the evidence about these interventions is still scattered in the literature.

Objective: To identify and synthetize the effects of home-based physical activity interventions for PwD.

Methods: Electronic and hand search were conducted. Quality of studies was assessed using the Delphi-List. Effect sizes (ES) were calculated with MetaXL 2.0. A meta-analysis was conducted for Mini-Mental Status Examination (MMSE), Neuropsychiatric Inventory, Cornell Scale for Depression in Dementia, Alzheimer’s Disease Cooperative Study Group Activities of Daily Living Scale (ADCS-ADL), Functional Reach test, Timed Up and Go test, Short Physical Performance Battery, Dementia Quality of Life, Neuropsychiatric Inventory caregivers and Zarit Burden Interview.

Results: Sixteen randomised controlled trials were included, with most being of high quality and published after 2015. Large heterogeneity of intervention length (2 months to 2 years), frequency (daily to 4-6 times bimonthly) and session duration (20-30 minutes to 12 hours) was found. Medium to large ES were found in cognitive function, changes in Behavioural and Psychological Symptoms of Dementia (BPSD), activities of daily living, health-related physical fitness, physical activity, falls, health-related quality of life and carer’s burden. Significant results in Meta-analysis, favouring home-based physical activity intervention, were showed for MMSE (ES=0.71, 95%CI 0.43, 0.99), Neuropsychiatric Inventory (ES=-0.37, 95%CI -0.57, -0.17), ADCS-ADL (ES=0.80, 95%CI 0.53, 1.07), Functional Reach test (ES=2.24, 95%CI 1.80, 2.68), Timed Up and Go test (ES=-2.40, 95%CI -2.84, -1.96), Neuropsychiatric Inventory caregivers (ES=-0.63, 95%CI -0.94, -0.32) and Zarit Burden Interview (ES=-0.45, 95%CI -0.77, -0.13). Few minor adverse events and high adherence to intervention were reported.

Conclusions: Home-based physical activity interventions seem safe and effective in delaying cognitive function decline and improving changes in BPSD, activities of daily living, health-related physical fitness and carer’s burden in people with dementia.

PO2.15. Between “Badantaggio” and “Sindrome Italia”:  The Optimus Domi experience in the field of care

GHILARDI Nicoletta1, CAROBBIO Egle Miriam1, PACENZA Caterina1, BRIGNOLI Paola2, LAURIA Isabella1, MORGANTI Francesca3

1Associazione Insieme a Te Onlus, San Paolo d'Argon (BG), Italy, 2Tha Care Group, San Paolo d'Argon (BG), Italy, 3Università degli Studi di Bergamo - Dipartimento Scienze Umane e Sociali, Bergamo, Italy

The word “badante” (typically used in Italy) moves away from a correct representation of the figure it intends to describe, since this term does not explain the social importance of this work, nor considers the human dimension related to it. This is an “another kind of welfare”, developed in the last years following changes in the social dimension, habits and family commitments and the increase of the population average age.

From Italian statistics, at the end of 2017, home workers regularly employed by Italian families were about 865.000 (including housekeepers and badanti). More than 7% of Italian elders over 65 years are assisted by a badante and this percentage increases in Northern regions, where the ratio becomes 10%. It’s the most diffused type of care, after the family one.    

One of the most important topic is the so called “Sindrome Italia”, highlighted by recent studies that pointed out a huge number of “badanti” who needed psychiatric cure once returned in their country of origin (basically Romania).

This “mal d’Italia” could be the result of complex situations due to multiple factors (lack of concrete perspectives of change, distance from their families, difficulty in being recognised by employers as a person and being enhanced for their skills). This issue also appears to be intimately related to the Burnout syndrome.

In the presented study, risk and protective factors in health care professions will be analysed.

Moreover, the contribute of the Optimus Domi model - an Italian home care model developed for about 20 years - will be presented. In particular, the work of Tutoring with Family caregivers will be analysed, as a tool that promotes the protective factors, intercepts and manages the burnout risk factors in the daily work.

PO2.16. Adaption of the “EAT-HC” for German long-term care - First results of content validity and feasibility testing

BLECKMANN Anne1, PALM Rebecca2, HOLLE Bernhard1

1German Center for Neurodegenerative Diseases (DZNE), Site Witten; Witten/Herdecke University, Faculty of Health, Department for Nursing Science, Witten, Germany, 2German Center for Neurodegenerative Diseases (DZNE), Site Witten; Witten/Herdecke University, Faculty of Health, Department for Nursing Science, Witten, Germany

Background: The influence of the environment in dementia-specific care has been known for several years. A well-designed living unit in long-term care can help to maintain remaining abilities longer and thus positively influence the quality of life of people with dementia. So far, there is no valid instrument with which the quality of the physical environment in long-term care facilities can be systematically assessed. For this reason, the Australian Environmental Audit Tool – High Care (EAT-HC), developed by Fleming and Bennett (2015), was translated into German, linguistically validated and culturally adapted in a multi-step process according to the WHO (1998).

Objectives and Methods: Before it can be used as an instrument in healthcare research, the reliability and validity of the adapted instrument (G-EAT) have to be tested. This also includes feasibility. To determine content validity, the method of Content Validity Indexing according to Lynn (1984) was used and an interdisciplinary panel of various scientific experts in the field of dementia specific healthcare research was consulted to identify challenging items in relevance and comprehension. In the upcoming months, three pre-tests in integrative and segregative living units in German nursing homes will be conducted to evaluate the feasibility of the instrument and to address the way of dealing with challenging items. The presentation will give an overview of the results from the content validity rating and the pretests focusing on these items.

Results and Conclusion: Using the Content Validity Indexing method, a number of items could be identified which may not be applicable in German long-term care settings due to cultural and legal differences and must be adapted or excluded from the German version of the instrument. The results of the pre-tests allow further adjustments to the instrument.

PO2.17. Dementia care durations and their determinants. Results from the BESIDE project

JANSSEN Olin1, VOS Stephanie2, HANDELS Ron3, VERMUNT Lisa4, VERHEIJ Robert5, VERHEY Frans6, VAN HOUT Hein7, VISSER Pieter Jelle8, JOLING Karlijn7

1Maastricht University, Maastricht, Netherlands, 2Alzheimer Centre Limburg, Department of Psychiatry and Neuropsychology, School for Mental Health and Neuroscience, Maastricht University, Maastricht, Netherlands, 3Alzheimer Centre Limburg, Department of Psychiatry and Neuropsychology, School for Mental Health and Neuroscience, Maastricht University, Maastricht, Netherlands & Department of Neurobiology, Care sciences and Society, Karolinska Institutet, Stockholm, Maastricht, Netherlands, 4Amsterdam UMC, Vrije Universiteit Amsterdam, Department of Neurology, Alzheimer Centre Amsterdam, Amsterdam Neuroscience, Amsterdam, Netherlands, 5Nivel, Netherlands Institute of Health Services Research, Utrecht, Netherlands, 6Alzheimer Centre Limburg, Department of Psychiatry and Neuropsychology, School for Mental Health and Neuroscience, Maastricht University, Maastricht, Netherlands, 7Amsterdam UMC, Vrije Universiteit Amsterdam, Department of General Practice and Elderly Care Medicine, Amsterdam Public Health Research Institute, de Boelelaan, Amsterdam, Netherlands, 8Alzheimer Centre Limburg, Department of Psychiatry and Neuropsychology, School for Mental Health and Neuroscience, Maastricht University, Maastricht, Netherlands & Amsterdam UMC, Vrije Universiteit Amsterdam, Department of Neurology, Alzheimer Centre , Maastricht, Netherlands

Objective: We aimed to (1) gain insight into the durations of general practitioner (GP) care, home care and institutional care after dementia diagnosis, and (2) estimate the effect of age, sex, living situation, dementia medication, migration background, and income on these durations.

Methods: We included 11.012 community-dwelling persons with an incident dementia diagnosis from a Dutch GP electronic health record (EHR)-based database, and linked records with population-based healthcare registry and mortality data from 2008 through 2014. We used multi-state modelling transition rates to estimate care durations.

Results: Of mean dementia care duration at age 75, 1.9-2.0 years were with GP care, 2.6-3.4 years with home care and 1.6-3.2 years with institutional care in men and women, respectively. Mean (95% confidence interval) dementia care duration was 6.1 years for men (5.9-6.4) and 8.5 years (8.2-8.8) for women. At age 85, men and women used on average respectively 0.7-0.8 years GP care, 1.7-2.3 years home care, and 1.1-2.3 years institutional care. Polypharmacy was associated with shorter durations of institutional care, while living alone during diagnosis was associated with shorter durations of GP care and longer durations of home and institutional care. Prescribed dementia medication was not associated with shorter or longer durations of specific care types. Non-western migration background and high income were associated with longer durations of GP care. 

Conclusions: Based on unique linked EHR data in a large unbiased population, these findings improve our understanding of long-term dementia care trajectories. These findings can aid the planning of healthcare resources and monitoring of the effect of healthcare policy and interventions, by incorporating transition rates in dementia progression models and simulation exercises. The associations of living alone, polypharmacy, migration background, and income with differential formal care durations implicate the importance of (in)formal care access, care dependency and comorbid conditions. 

PO2.18. Relationship between delusions and severe agitation in residents with dementia: A cross-lagged panel study

JAGODA Franziska1, PALM Rebecca1, HOLLE Daniela2

1DZNE, Witten, Germany, 2hsg Bochum, Bochum, Germany

Background: During the course of dementia people experience different clinical phenomena that become observable. The majority of people with dementia experience at least one neuropsychiatric symptom in three years. Agitation is the most prevalent among these symptoms. It is associated with higher caregiver stress, deterioration of patients’ and caregivers’ quality of life, as well as higher use of physical restraints and psychotropic drugs. The understanding of factors that contribute to agitation in nursing home residents with dementia is limited, especially the interplay between severe agitation and other neuropsychiatric symptoms has not been thoroughly investigated yet.

Objective: To examine the direction of relationships between delusions and severe agitation in nursing home residents with dementia living in German nursing homes.

Method: Secondary data analysis of an observational, longitudinal study in 51 nursing homes with n = 1967 participants. A cross-lagged panel study was conducted using structural equation modelling with two measurement points and a time lag of twelve months. Neuropsychiatric symptoms were assessed using the Neuropsychiatric Inventory Questionnaire (NPI-Q). Severe agitation was then defined as a construct of a combined score of the NPI-Q items agitation/aggression, disinhibition and irritability/lability. Delusions were measured using the relevant NPI-Q item.

Results: Delusions at time 1 positively predicted severe agitation at time 2. At the same time the stability coefficients for severe agitation were high in strength. The cross-lagged panel study suggests that the relationship between delusions and severe agitation is unidirectional.

Conclusion: It was possible to obtain evidence for the relationship between delusions and severe agitation in nursing home residents with dementia. The predominant effect seems to be the stability of severe agitation itself, whereas delusions also seem to have an influence on severe agitation. Therefore, reducing both severe agitation and delusions may result in a decreased state of agitation for residents with dementia.

PO2.19. Insights from informal carers regarding the use of technology and connected health for people with dementia

MACKEY Laura1, GUISADO FERNÁNDEZ Estefanía1, POWER Dermot2, O'SHEA Diarmuid3, CAULFIELD Brian1, BLAKE Catherine1

1University College Dublin, Dublin, Ireland, 2Mater Misericordiae University Hospital, Dublin, Ireland, 3St Vincent's University Hospital, Dublin, Ireland

The prevalence of dementia is on the rise worldwide, and innovative strategies are required to meet increasing demands on health services. The Connected Health (CH) Model of Care, which uses mobile technologies to include patients and carers in the decision-making process, may offer more sustainable approaches in providing support to people with dementia and their carers in their homes. The aim of the current study was to explore carers’ attitudes towards the use of CH technology in their homes, and discuss how technology may facilitate their needs. A focus group interview with six informal carers was conducted, which resulted in the emergence of four themes: 1) barriers to, and misinterpretations of CH; 2) enquiring minds and unmasking existing strategies; 3) facilitating the carer role – ‘back me up’; 4) enhancing experience for the person with dementia. The findings from this qualitative study demonstrated that carers were interested in using technologies to facilitate their day-to-day management of the person with dementia, and many already used applications and websites (i.e. Spotify, YouTube) to facilitate leisure activities, such as reminiscence therapy and physical activity. In addition, most carers had considered the use of tracking devices to monitor the whereabouts the person with dementia. However, all participants had difficulty in recognising their role within the CH model of care, in terms of using the technology to monitor and make decisions regarding the person with dementia’s health alongside healthcare professionals. Despite this, participants did recognise the benefit of having objective information to allow for more meaningful dialogue with healthcare professionals. Further research regarding the barriers to successful integration of the CH model of care at both individual and organisational levels is required.

PO2.20. Utilization of formal services as a part of the informal care concepts of family caregivers in domestic settings – Results from a qualitative hermeneutic study and implications for dementia care

VON KUTZLEBEN Milena

Carl von Ossietzky Universität Oldenburg, Oldenburg, Germany

Background: For most community-dwelling persons with dementia, one close relative assumes the role of the key care provider in terms of hands-on care as well as organisation and coordination of informal and formal support. However, most informal caregivers step into their caregiving career without significant knowledge and preparation. There is little empirical evidence of what makes care arrangements sustainable over time, but some in-depth qualitative research indicates that role- and self-concepts of the informal carer should be considered as crucial. The present study aimed at reconstructing informal caregiving trajectories and its underlying meaning and structures over the course of dementia.

Methods: A qualitative longitudinal study (two points of time in data collection within 18 months, n =12 resp. n= 4). Case reconstructions according to the methodological principles of objective hermeneutics.

Results: Hermeneutic in depth analysis revealed a typical trajectory of phases in informal caregiving across all cases. However, informal caregivers followed different priorities and showed very specific strategies to tackle caregiving challenges in each phase. Furthermore, different types of informal care concepts as regards motives, aims and personal boundaries became apparent. One’s definition of the caregiving role, an individual care strategy, and the attitude towards the person with dementia appeared to be determinants of these informal care concepts. Utilization of formal services (if and how) turned out to be an essential feature of the informal care concept.

Conclusions: Utilization of formal services not necessarily refers to an objective need but may also indicate a subjective need in the context of a relative’s informal care concept. The logics of action in informal caregiving results from the respective type of informal care concept. Case reconstructions are a useful approach to make these informal care concepts visible and can be applied in dementia research as well as in dementia care.

PO2.21. Experiences of care staff with daily care of nursing home residents with dementia

SMITS Carolien1, BOOGERS Pieter2

1Windesheim University of Applied Sciences, Zwolle, Netherlands, 2Het Laar Care organisation, Tilburg, Netherlands

Aim. There is an international shortage of nursing home care staff. Not many potential carers and students choose for this profession, due to a negative view of the care of older adults and the stigma of dementia. This study aims to offer insight in the actual caring experiences of care staff in a Dutch nursing home.

Methods. The study design was conducted from a qualitative approach with observations of and interviews with nursing home care staff. Observations (shadowing) were done during daily care activities. Subsequently, the observed carer was interviewed. Data analysis consisted of open and axial coding. After data collection in carers, data saturation was reached.

Results. Eight themes reflect staff care experiences: residents’ behaviour, dealing with residents’ behaviour, care burden, satisfaction with being helpful for someone, the value of little things, relationship with the residents, collaboration with colleagues and ethical issues. Residents’ behaviour links many themes. It is both a challenge and a source of work satisfaction.

Conclusion Residents’ behaviour is the most important concept defining carers daily work experiences. Residents’ behaviour is both challenging and rewarding. Care staff’s professional identity should reflect their focus on this behaviour. This study describes a more realistic balance between negative and positive experiences compared with most popular and research literature. This balanced view may help the recruitment and maintenance of well motivated care staff in dementia care.   

PO2.22. The effects of Animal-Assisted Therapy (AAT) on the behaviour of older persons living with dementia within a Maltese Long Term Care (LTC) facility

DEBONO Thea1, FENECH Maria Aurora2

1CareMalta, Mosta, Malta, 2University of Malta, Msida, Malta

Aim: This study was designed to investigate the effects of Animal Assisted Therapy (AAT) on the behaviours of older persons living with dementia within a Maltese Long-term Care (LTC) facility.

Background: The number of older persons living with dementia in LTC facilities is increasing and though pharmacological methods is the mainstay of treatment, less invasive non-pharmacological therapies are being explored as an adjunct/replacement.  This will improve the quality of life.  AAT is one of these promising therapies that has not yet been fully investigated especially in LTC facilities.

Methodology: A series of 12 AAT sessions took place with 6 older persons living with moderate to severe dementia, residing in the Dementia Unit of the LTC facility. Observations of Behavioural and Psychological Symptoms of Dementia (BPSD) by staff and relatives prior to the AAT sessions, and by the researcher during/post AAT sessions were recorded.  A 6-year-old, mixed breed Chihuahua dog, assisted in the project.

Results: Through AAT, an overall decrease in frequency and sometimes cessation in negative behaviours of the older person participants was noted. There also was an improvement in social interaction. This study also identified factors that influenced the effect of the AAT sessions: (a) severity of dementia, (b) mobility, (c) type of session, (d) timing of session and (e) the personalities and prior habits of the participants.

Recommendations: Although future studies are required on a larger cohort and over a longer time span, as well as on the duration of the effects of AAT after cessation of therapy, the results of this study support the fact that person-specific AAT improves BPSD in older persons living with dementia in a local LTC facility.

PO2.23. The 'Haven' - The 5 pillars of success of a specialised residential care department

ENGELS Josine

Swinhove Groep, Zwijndrecht, Netherlands

The majority of people with dementia experiences some form of neuropsychiatric symptoms over the course of their disease. However, sometimes neuropsychiatric symptoms are very severe and co-occur simultaneously. This strongly affects everyone involved, and often results in nursing home admission. In general nursing home departments, however, management of these symptoms is sometimes unattainable.

The 'Haven' is a long-term care department in a Dutch nursing home, offering specialised care to 9 residents with dementia and complex neuropsychiatric symptoms, aiming to improve quality of life. The success of this department is based on five pillars.

The first pillar is the dedicated nursing staff, forming a high-performance team with experience and competence in balance. As a team they are intrinsically motivated to discover and accept the person behind the disease unconditionally. The second pillar is the internalisation of specific basic attitudes and a set of skills. Attentive presence, willingness to learn, compassion and curiosity are basic attitudes; being able to recognise minor changes and creative thinking are basic skills. The third pillar is close collaboration of the nursing team with an elderly care physician, a psychologist, an occupational therapist, a physiotherapist, a movement coach, and a quality of life coach. Everyone involved reports observations from their professional perspectives, which are combined and discussed in weekly meetings. The fourth pillar is the application of various methods and tools in daily practice. The 'Haven' practices a strictly individual approach to every resident. Various psychosocial interventions are applied: a firm daily structure balancing activity and rest; sensory stimulation or deprivation; personalised activities; music; touch; physical activities in high or low intensity. The elderly care physician focuses on comfort with a personalised medical and pharmaceutical approach. The fifth pillar is an inclusive family view: daily visits and involvement of several family members, combined with intensive family support.

PO2.24. Improving communication. Improving care

MCCRIMMON Matilda1, SANDBACH John2, CONNER Gary2, BOYD Jennifer3, SHOTTER Caroline3

1NHS24, Glasgow, United Kingdom, 2Glasgow, United Kingdom, 3Erskine, United Kingdom

The aim of our project was to improve the process of calls between NHS111 and care homes to support improved triage, more timely and appropriate outcomes for residents. This was prompted by recommendations in the report “Pulling together: transforming urgent care for the people of Scotland” where it was recognised that NHS111 triage could be lengthy and repetitive.

It was decided to develop a communication tool for care homes contacting NHS111. This would ensure that appropraite information was available to decide the best outcome for residents.

We worked together using the Scottish Patient Safety Programme S.B.A.R.: (Situation, Background, Assessment and Recommendation) format. Using plan, do study act cycles we refined the tool to support care home assessment of residents and NHS111 triage. Completion of the S.B.A.R. has supported nurses’ decision making, in some cases identifying that there was no need for call. Increased the confidence of nursing home staff when contacting NHS111. Reduced call times to NHS111 resulting in faster outcome for residents.  The final tool has been spread to Renfrewshire Care Homes with plan to spread to all Scottish care homes.

This work supports Commitments 3,5,6 and 7 of Scotland’s National Dementia Starategy 2017-2020. 62% of Adult Care Home residents are living with dementia and 7 out of 10 people with dementia have at least one comorbidity.

Commitment 3: Supporting better Out of Hours Care will reduce uneccessary transfers to secondary care, supporting people to remain in their homelike setting. Commitment 5 and 6: Many people living with dementia will receive end of life care in a Care Home Setting. The S.B.A.R. includes information on Advanced Care Planning and preferred place of care. Commitment 7: Improved information sharing between NHS111 and care homes should reduce the number of residents referred to secondary care.

PO2.25. Staff’s perspectives on the organization of home care service to persons with dementia in Norway – A qualitative study

HOEL Kari-Anne1, HOEL Kari-Anne1-2, ROKSTAD Anne Marie Mork2-3, LICHTWARCK Bjørn2-4-5, SELBÆK Geir1-2, BERGH Sverre5

1The research centre for Age-related Functional Decline and Disease, Innlandet Hospital trust, Ottestad, Norway,2The Norwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, 3Faculty of Health and Social Sciences, Molde University College, Molde, Norway, 4Faculty of Medicine, University of Oslo, 5Department of Geriatric Medicine, Oslo University Hospital, Oslo, Norway

Background: Home care service to persons with dementia in Norway varies between municipalities, and the complexity of the service makes it difficult to customize it to persons with dementia.

Aim: The aim of this study was to explore the staff’s perspectives on the organization of home care service to persons with dementia.

Materials and Methods: The study has a qualitative, descriptive design. Fifteen health professionals, leaders and staff were interviewed using a semi structured interview guide. The transcribed interviews were analyzed using a qualitative content analysis.

Results: Three main themes appeared in the material:

  • Persons with dementia in home care services – what do they need? Working with persons with dementia is described as complex, and with need for individualization to give necessary healthcare. Spending time in the person’s home is used as a tool to establish the person with dementia’s confidence, and to get the opportunity to give necessary healthcare.
  • Challenges in the organization of home care services to persons with dementia; Lack of time is described as a large problem in care for persons with dementia living at home. Continuity in care, described as an important part of home care service, is difficult to apply although it is focused.
  • Home care service to persons with dementia needs robust solutions; To specialize a service only for persons with dementia seems difficult. Practical tasks are often prioritized in the daily service, rather than facilitating for an individually adapted service.

Conclusion: There is a growing need for home care service customized to persons with dementia, focusing on use of time and continuity in care. Although practical tasks still are prioritized rather than an individually adapted service.

PO2.26. Exploring dementia care in a private nursing home for people with advanced dementia. An ethnographic study

HJORTH HANSEN Cathrine1, MARTINSEN Bente1, KIRKEVOLD Marit2

1Department of Public Health, Nursing, Aarhus University, Aarhus, Denmark, 2Department of Nursing Science, Oslo University, Oslo, Norway

Background: As a response to the growing number of people living with dementia in nursing homes, the concept of the nursing home is currently under development. New types of nursing homes are established both in Denmark as well as in other parts of Europe in an attempt to improve care environments and approaches. In the beginning of 2016, a small private nursing home for people with advanced dementia – known as Dagmarsminde - was established in Denmark. The intention was to provide high quality dementia care and reduce the use of psychotropic medications among the residents by developing an innovative and homely care environment with a strong emphasis on togetherness and everyday rhythm.

Objective: The purpose of this study is to explore the culture of care in Dagmarsminde. This kind of knowledge is valuable as it can provide new aspects to the ongoing debate about nursing homes for people with dementia.

Method: The study has an ethnographic research design, and the data material is collected by participant observations (170 hours), semi-structured interviews with caregivers (16) and semi-structured interviews with relatives (9).

Results & Discussion: A thematic analysis across the data material is in progress, and we will present the results from the first part of the analysis. Focus will be on the principal care approaches in Dagmarsminde as well as on the implications for residents, relatives and caregivers. Furthermore, we will discuss the meaning of professionalism when the concept of the nursing home changes.

PO2.27. The use of interactive therapy methods in home and residential care

SAßEN Sascha

Korian, Munich, Germany

In the past few years, many things in our living environment have changed, specifically the influence of new technology in our daily lives has created new opportunities and possibilities. As many of you certainly have heard, this new generation of everyday devices and gadgets is often referred to as ‘smart’, like in ‘smart home’ for example. This trend is slowly beginning to spread into different applications and domains, for example in care for the elderly, where the coining term is called ‘ambient assisted living’ projects, which try to integrate technological devices to improve the living conditions of the elderly, without being too intrusive, have yielded very interesting results, and look very promising. Based on those findings, it seems a promising idea to introduce the technological innovations into new care and therapy concepts or devices, to improve the wellbeing and everyday life of people with dementia, using a variety of sensory stimuli. Sound, vibration and light, which people with dementia have been proven to be very receptive to, could be used in conjunction with moderation or storytelling to trigger memories of certain cherished moments in the past, or to experience fairytales anew. People with dementia could be integrated into activities they would otherwise just experience, now actively participating and integrating themselves in. It would also be possible to integrate certain sensors to detect actions of the people with dementia, to encourage movement and on the other hand gain a feedback about the mobility of the person using this interactive therapy device. The introduction of such devices could not only result in a better integration of people with dementia into existing therapy concepts and be an enrichment to their versatility, but could also prove to be an additional source of otherwise difficult to obtain information, e.g. mobility or development of tremors.

PO2.28. Positive Care

SAßEN Sascha

Korian, Munich, Germany

Everybody at the Korian group - caregivers, therapists, managers, caterers - they are all united in their goal to fulfill one mission using the same approach: to enhance the happiness and well-being of our residents in ways that go far beyond providing medical care and meeting their daily needs, as important as those factors may be. We call this approach Positive Care, and it translates in many ways. Positive Care enhances seniors’ well-being and brings joy into their lives as part of an excellent standard of care.

It’s a way of being and doing that is led from the heart, while maintaining a perfectly safe care framework. It’s about establishing an individual care pathway for each person based on their needs and wishes, whatever health requirements they may have. It’s about seamlessly adjusting to a person’s pace and helping them to preserve their abilities in a specially adapted setting where they feel safe and confident.

A special training program using a blended learning system has been developed for all our staff and is applied to all facilities. With particular focus on non-pharmacological therapies we aim to maintain physical and motor skills as well as cognitive skills and to prevent psychological and behavioral disorders. These three areas constitute the central pillars of the project. All facilities are equipped with distinct material to be able to implement and apply interventions that were specially chosen and scientifically approved to pursue the common objective. To evaluate the impacts on residents’ well-being a scientific evaluation is planned after the implementation in all facilities. It requires dedicated teams that are always willing to question their own methods, to make progress and constantly strive to show more empathy and improve their listening skills to keep pace with the rising expectations of residents and their relatives.

PO2.29. Conceptual design and aims of the “Digital Dementia Registry Bavaria” (digiDEM Bayern)

DIETZEL Nikolas1, KARRER Linda1, KRATZER André2, REICHHOLD Michael3, TRINKWALTER Jörg4, PROKOSCH Hans-Ulrich3, GRAESSEL Elmar2, KOLOMINSKY-RABAS Peter1

1Interdisciplinary Center for Health Technology Assessment (HTA) and Public Health (IZPH), Friedrich-Alexander University Erlangen-Nürnberg (FAU), Erlangen, Germany, 2Center for Health Services Research in Medicine, Department of Psychiatry and Psychotherapy, University Hospital Erlangen, Friedrich-Alexander University Erlangen-Nürnberg (FAU), Erlangen, Germany, 3Chair of Medical Informatics, Friedrich-Alexander University Erlangen-Nürnberg (FAU), Erlangen, Germany, 4Medical Valley EMN, Erlangen, Germany

Background: There are currently more than 240.000 people with dementia (PwD) living in Bavaria. This number is predicted to rise up to 340.000 PwD until 2032. Therefore, the care of PwD will be one of the major challenges for societies in the future. Aim of the “Digital Dementia Registry Bavaria” (digiDEM Bayern) is the development of a population-based registry in order to get a better understanding of the long-term course of dementia and the care situations in Bavaria. Furthermore, digital services for PwD, caregivers, voluntaries and interested citizens will be provided.

Methods: digiDEM Bayern is a longitudinal study with follow-ups after six (t6) and twelve months (t12) and afterwards on a yearly basis (t24, t36). Data will be collected by standardised face-to-face interviews in cooperation with local professionals in all seven Bavarian administrative regions. Validated and well-designed instruments will be used. The project is planned for five years (2019-2023).

Results: digiDEM will collect comprehensive longitudinal data on the one hand and provide digital services on the other hand. There will be a digital guide for PwD and their informal caregiver; digital therapy offers for PwD and people with cognitive impairments; a digital support platform for voluntaries and a digital participation platform for interested citizens.

Conclusion: It is to be expected that digiDEM Bayern will generate valid long-term care data, which will help improving the care settings in all seven administrative regions. Moreover, digiDEM Bayern will facilitate a better orientation within the jungle of care services. Digital interventions will have a positive impact on the course of cognitive decline. The widespread digital approach will ensure a broad access, in particular for people living in rural areas.

Funding Notice: digiDEM Bayern is funded by the Bavarian Ministry of Health and Care as part of BAYERN DIGITAL II (funding code: G42d-G8300-2017/1606-83).

PO2.30. Palliative care of people with advanced dementia who are cared for at home and in long term care

SLAWIK Till1, FLEISCHHAKER Mareike1, ROßMEIER Carola1, HARTMANN Julia1, SCHNEIDER-SCHELTE Helga2, TENSIL Maria1, KEHL Victoria3, EGERT-SCHWENDER Silvia3, JOX Ralf4, DIEHL-SCHMID Janine1

1Technical University of Munich, School of Medicine, Department of Psychiatry, Munich, Germany, 2German Alzheimer Association, Berlin, Germany, 3Institut für Medizinische Informatik, Statistik und Epidemiologie Münchner Studienzentrum, Münchner Studienzentrum, Munich, Germany, 4Geriatric Palliative Care, Department of Medicine, Lausanne University Hospital, Lausanne, Switzerland

Background: One aim of the prospective cohort study EPYLOGE (IssuEs in Palliative care for people in advanced and terminal stages of Young-onset and Late-Onset dementia in GErmany) is to compare patients with advanced dementia, who are cared for at home and in long term care (LTC). A special focus lies on patient symptoms and caregiver burden.

Methods: During EPYLOGE study visits patients were examined in detail, standardized caregiver interviews were performed, and patient files were analysed. As of Dec 31st, 2018, 122 patients were included, 52 of which were cared for at home and 70 in an LTC facility.

Results: Overall, symptom management, caregiver's satisfaction with care and patient’s quality of life were rated as "fair" on average. Symptoms and comfort did not differ much between community-dwelling and LTC patients: Cognitive impairment was slightly worse in the latter. There were no significant differences regarding severity of dementia, impairment of activities of daily living, neuropsychiatric symptoms, suffering, pain and quality of life. In addition, psychotropic drug therapy did not vary. Significant differences, however, were observed amongst family caregivers: those who cared for patients at home were considerably older, were less satisfied with patient care, had a higher depression score and felt more strained.

Conclusion: The preliminary results show the urgent need to provide family caregivers who care for a patient with advanced dementia at home with more support, both financially and structurally.

PO2.31. Silence is not golden: Support needs of people with dementia who have communication difficulties. Validation of the Communication Support-Needs Assessment Tool (CoSNAT-D)

KREIN Luisa1, JEON Yun-Hee1, MILLER AMBERBER Amanda2

1University of Sydney, Sydney, Australia, 2Charles Sturt University, Sydney, Australia

Background: The ability to communicate is key to human connection and essential for building and maintaining relationships, education, work and participation in everyday life. The majority of people with dementia experience language and communication impairment (LCI) at some stage of the disease progression. While evidence-based, non-pharmacological interventions and strategies are available, timely and adequate (specialist) support services are currently only provided on an ad-hoc basis. The need for a timely identification of LCI is paramount. The aim of the study was to develop and validate a communication-support needs assessment tool (CoSNAT-D) to assist community-based health care professionals in the early identification of LCI as well as support needs of people living with dementia and their families. Method: Tool development processes involved establishing a guiding theoretical framework based on a review of 18 existing tools; end-user consultations for face validity (n=7 people with dementia, n=15 caregivers), and a modified Delphi approach for content validity. The required level of agreement regarding relevance and importance of items was set at 70% and determined by an international expert panel (n=28). Results: The pilot version of the CoSNAT-D comprises 35 items. End-users and experts in the field of dementia and communication confirmed face- and content validity. Qualitative content analysis of end-user interviews showed limited knowledge of caregivers and people with dementia about available communication-support services. Expert consensus regarding content validity of the items was reached within three rounds for all 35 items and two items were omitted. Conclusion: CoSNAT-D is a simple tool aiming to address a gap in specialist service delivery for people with dementia who experience LCI. The initial validation results provide potential for improving care of people with dementia and management pathways. Additional testing of other relevant psychometric properties in a community care context is warranted.

 

 
 

Last Updated: Thursday 26 September 2019

 

 
  • Acknowledgements

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

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