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P23. Home and residential care I

Detailed programme, abstracts and presentations

P23.1. Optimal Time study: Investigating whether there is an optimal time for a person with dementia to move to a care home


King's College London, London, United Kingdom

Deciding if and when to move to a care home may be distressing for people with dementia and their families. The Optimal Time study investigated when (if any) was an ‘optimal’ or best time for a person with dementia to move to a care home. This three year, mixed methods study addressed an important research question which was prioritised by the James Lind Alliance and the Alzheimer’s Society. Eighty face-to-face qualitative interviews were conducted with (1) care home managers and (2) social workers who had supported moves to a care home; (3) people with dementia who had recently moved to a care home, and (4) their relatives. Participants were asked about their experiences, beliefs and attitudes about an ‘optimal’ time. Interviews were audio-recorded, transcribed and analysed thematically. Four overarching drivers from these interviews were identified: (1) ability of family carer to continue caring; (2) amount of other support in the home received; (3) managing risks and safety at home; (4) wishes of person with dementia. These themes were fed into the next part of the study, a factorial survey. Themes were incorporated into a ‘skeleton’ vignette about a fictitious person with dementia, Jane, living at home with her husband; and a total of 54 possible vignettes were constructed. Survey participants were each presented with seven of these vignettes and asked “would you recommend that Jane move to a care home or continue living at home?” 100 surveys were completed by dementia care practitioners across England. Emerging results from the factorial survey suggest that the wishes of the person with dementia, along with the ability of the carer to continue to care were prioritised. We will present findings from both qualitative interviews and the factorial survey. Overall findings will be used to develop factsheets to support individuals with this decision.

P23.2. Multicomponent non-pharmacological interventions for sleep disturbances in people with dementia – Systematic review of intervention components

HYLLA Jonas1, WILFLING Denise2, BERG Almuth3, HALEK Margareta1, KÖPKE Sascha2, MEYER Gabriele3, MÖHLER Ralph4, DICHTER Martin N.1

1German Center for Neurodegenerative Diseases (DZNE), Witten, Germany, 2Institute of Social Medicine and Epidemiology, Nursing Research Unit, University of Lübeck, Lübeck, Germany, 3Institute for Health and Nursing Sciences, Medical Faculty, Martin Luther University Halle-Wittenberg, Halle (Saale), Germany, 4School of Public Health, Bielefeld University, Bielefeld, Germany

Background:Sleep disturbances are frequent in people with dementia (PwD). A recent prevalence study in Germany showed that nearly one quarter of 1187 residents with dementia in 28 nursing homes had disturbed sleep. To prevent sleep disturbances and reduce distress in PwD and caregivers, it is important to provide effective interventions, which can positively influence sleep. Studies have shown that pharmacological interventions are not effective in PwD. In a current study, we aim to develop and evaluate a “Multi-modal, non-pharmacological intervention for sleep disturbances in nursing home residents with dementia (MoNoPol-Sleep)”. Within this project, we conducted a systematic review to present an analysis of multicomponent interventions.

Methods:The review followed four methodological steps: (1) comprehensive search in several databases, (2) applying the Cochrane risk of bias tool or CASP tool for observational studies, (3) in-depth extraction and analysis of intervention components using the TIDieR checklist, (4) applying the CReDECI 2 checklist to analyse quality of reporting. All steps were performed by at least two independent reviewers.

Results:The literature search revealed 2024 publications of which 130 full-texts were screened. Of these, 14 studies were included, each evaluating a multicomponent intervention. The number of intervention components in individual studies ranged from two to six. Frequently applied components were physical or social activities and staff training. Also, results showed that none of the studies investigates interaction between components or take the context characteristics at intervention development into account.

Conclusion:The results are an important step in the development of an effective multimodal non-pharmacological intervention for sleep disturbances in PwD. Only two thirds of the included studies indicated positive findings. For the development of an intervention, it is important to consider interaction between components and specific context characteristics.

P23.3. Effectiveness of a palliative care programme for nursing home residents with and without dementia in seven countries: The PACE cluster-randomised controlled trial

VAN DEN BLOCK Lieve1, HONINX Elisabeth2, PIVODIC Lara2, MIRANDA Rose2, ONWUTEAKA-PHILIPSEN Bregje3, VAN HOUT Hein3, PASMAN Roeline3, OOSTERVELD-VLUG Mariska3, TEN KOPPEL Maud3, PIERS Ruth4, VAN DEN NOORTGATE Nele4, ENGELS Yvonne5, VERNOOIJ-DASSEN Myrra5, HOCKLEY Jo6, FROGGATT Katherine6, PAYNE Sheila6, SZCZERBIŃSKA Katarzyna7, KYLÄNEN Marika8, GAMBASSI Giovanni9, PAUTEX Sophie10, BASSAL Catherine10, STEFANIE De Buyser4, LUC Deliens11, SMETS Tinne2

1End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB), Brussels, Belgium, 2Vrije Universiteit Brussel (VUB), Brussels, Belgium, 3Amsterdam UMC, Amsterdam, Netherlands, 4Ghent University Hospital,  Gent, Belgium, 5Radboud University Medical Center, Nijmegen, Netherlands, 6Lancaster University, Lancaster, United Kingdom, 7Jagiellonian University Medical College, Krakow, Poland, 8National Institute for Health and Welfare, Helsinki, Finland, 9Università Cattolica del Sacro Cuore, Rome, Italy, 10University of Geneva, Geneva, Switzerland, 11Ghent University and Vrije Universiteit Brussel, Brussels, Belgium

Objective: We investigated the effects of the PACE Steps to Success Programme –a one-year multicomponent programme aimed at implementing non-specialist palliative care in nursing homes– on outcomes for residents with and without dementia, and for staff.

Method: Cluster-randomised controlled trial comparing the PACE Programme with usual care in 78 nursing homes in seven countries (Belgium, England, Finland, Italy, Netherlands, Poland, Switzerland). Primary outcomes were resident’s quality of dying measured as staff-assessed symptom burden in the last week of life (EOLD-CAD) and staff palliative care knowledge (Palliative Care Survey). Secondary outcomes included quality of care for residents in the last month of life (QoD-LTC).

Results: We collected data on 610 deceased residents at baseline and 983 post-interventions in 37 intervention and 36 control homes. At staff level, we collected 2,680 questionnaires at baseline and 2,437 post-interventions in 37 intervention and 38 control homes. Quality of dying in residents did not differ between intervention and control groups (baseline-adjusted mean difference -0.55, 95% CI -1.71;0.61; p=0.35). Staff in the intervention group had significantly better knowledge of basic end-of-life care issues (one of three Palliative Care Survey subscales) than staff in the control group, but the difference was small (baseline-adjusted mean difference 0.04, 95%CI 0.02;0.05; p<0.001; Cohen’sd=0.16). The quality of end-of-life care was rated significantly better in the intervention group (baseline-adjusted mean difference 3.40, 95%CI 2.01;4.80; p<0.001; Cohen’sd=0.44); the difference was medium-sized. There was no differential effect between the subgroups of people with or without dementia on the total EOLD-CAD or QOD-LTC scores.

Conclusion: While there was no effect on symptom burden in the last week of life and only a small effect on staff palliative care knowledge, the PACE Programme was effective in improving quality of end-of-life care, and this for residents with and without dementia.

Trial registration ISRCTN14741671.

P23.4. Palliative care for people with dementia living at home: A systematic review of interventions

MIRANDA Rose1, BUNN Frances2, LYNCH Jennifer2, VAN DEN BLOCK Lieve1, GOODMAN Claire2

1End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium, 2Centre for Research in Primary and Community Care, University of Hertfordshire, Hatfield, United Kingdom

Background: Over the coming decades, a growing number of older people with dementia are expected to live and die at home. To improve their quality of life, a palliative care approach has been widely recommended. The European Association of Palliative Care (EAPC) defined optimal palliative care in dementia based on evidence and expert consensus. Yet, we know little on how to achieve this for people with dementia living at home.

Objectives: To examine evidence on home palliative care interventions in dementia, in terms of their effectiveness on end-of-life care outcomes, factors influencing implementation, the extent to which they address the EAPC palliative care domains and evidence gaps.

Methods:A systematic review that adhered to the PRISMA guidelines. The protocol was registered with PROSPERO (CRD42018093607). We searched four electronic databases up to April 2018 (PubMed, Scopus, Cochrane library and CINAHL) and conducted lateral searches.

Results: We retrieved eight relevant studies, none of which was of high quality. The evidence showed the potential benefits of the interventions in improving end-of-life care outcomes, such as in reducing behavioural disturbances at the end-of-life. The interventions most commonly addressed important palliative care domains irrespective of the reason for dying, e.g. optimal symptom management, continuity of care and psychosocial support. Other EAPC palliative care domains that are specifically important for people with dementia were rarely addressed by the interventions, e.g. prognostication of dying, avoidance of burdensome interventions or advance care planning. No direct evidence was found on facilitators and barriers to implementing the interventions.

Conclusions: The review highlights the paucity of high-quality research and dementia-specific interventions in palliative care for people with dementia living and dying at home. It recommends key areas for future work, such as the need to develop interventions integrating palliative care and dementia care and to identify facilitators and barriers to implementing interventions.

P23.5. Time from diagnosis to institutionalization and death in people with dementia. Results from the BESIDE project

JOLING Karlijn1, JANSSEN Olin2, FRANCKE Anneke3, VERHEIJ Robert4, LISSENBERG-WITTE Birgit1, VISSER Pieter-Jelle5, VAN HOUT Hein1

1Amsterdam UMC, location VUmc, Amsterdam, Netherlands, 2Alzheimer Centre Limburg, School for Mental Health and Neuroscience, Maastricht University., Maastricht, Netherlands, 3Nivel, Netherlands Institute of Health Services Research/ Amsterdam UMC, location VUmc, Utrecht, Netherlands, 4Nivel, Netherlands Institute of Health Services Research, Utrecht, Netherlands, 5Alzheimer Centre Limburg, School for Mental Health and Neuroscience, Maastricht University/ Amsterdam UMC, location VUmc, Alzheimer Centre Amsterdam, Amsterdam/ Maastricht, Netherlands

Background: Insight in the time from diagnosis until institutionalization and death is important for persons with dementia and their caregivers and of relevance for practice and policy. So far, information has mainly been based on studies with selective and relatively small samples. This study analyzed time until institutionalization and death from nationwide routine care registry data in community-dwelling incident dementia cases, and examined factors associated with these end points.

Methods: People with dementia were identified from general practitioner records and linked with national administrative databases. Survival regression models were used to estimate median time from diagnosis until institutionalization and death and to examine associations with socio-demographic and clinical factors. Comparisons were made with an age and gender matched control group without a dementia diagnosis or memory disorder.

Results: Data of 9,230 persons with dementia and 24,624 matched controls were analyzed. The median time until institutionalization was 3.9 years, and 5.0 years until death in people with dementia and could not be estimated for controls, as the cumulative incidence curve did not incline above 50%.

Once institutionalized, median time to death was longer for persons with dementia (2.5 years) than for controls (1.2 years). Older age, being female, native, living alone, not being frail and receiving home care were associated with a shorter time to institutionalization in people with dementia. Older age, being male, native, polypharmacy, being (pre)frail and receiving home care were associated with a shorter time to death. People who were prescribed dementia medication after the year they were diagnosed had a prolonged time to death.

Conclusion: The estimations and risk factors can support policy makers in planning care and allocating resources for people with dementia. Managing frailty and medications in persons with dementia may be challenging but may impact institutionalization and survival.

P23.6. Enjoying Life: A narrative approach to long-term psychogeriatric care


1Leyden Academy on Vitality and Ageing, Leiden, Netherlands, 2ActiVite, Leiderdorp, Netherlands

Background: In the Netherlands, the current long-term care system mainly focuses on the diseases, disabilities, and needs of nursing home residents. The Enjoying Life project takes a different approach and aims to increase attention on residents’ personal wellbeing and desires.

Method: Using participatory action research (PAR), a narrative approach to the provision and justification of care was developed collaboratively with care professionals of eleven Dutch (psychogeriatric) care organizations. Nurses (n=110) were trained to explore residents’ personal wellbeing and desires, and to act and report on this in a narrative way. Simultaneously, the approach and its integration in current care processes were evaluated and adapted based on observation and feedback of the nurses. Questionnaires were administered to map nurses’ experiences (n=85 at baseline), and interviews were held with nurses (n=24), residents with dementia (n=29) and significant others (n=28) to examine different perspectives on personal wellbeing, desires and roles.

Results: The PAR resulted in a narrative approach to psychogeriatric care, including exploring residents’ narratives on their personal wellbeing and desires, using these narratives to provide individualized person-centred care, and using narratives on the experiences of nurses, residents and significant others to justify quality of care. Nurses reported that the new approach increases insights in the wellbeing and desires of their residents, and that it facilitates them to offer person-centred care and to structurally reflect on doing the right thing. Moreover, the approach contributes to the collaboration between nurses, residents, and significant others.

Conclusion: The narrative approach developed collaboratively with the care professionals of eleven Dutch care organizations, appears to be feasible to integrate in psychogeriatric care. Currently, multiple organizations are implementing the approach of the Enjoying Life Project. Insights in the development and evaluation of the approach will be presented, as well as factors influencing successful implementation.



Last Updated: Tuesday 10 December 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