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P23. Home care and support

Detailed programme and abstracts

P23.1. Innovations in community-based care and home supports for people with dementia in Ireland


People with dementia and their families consistently report a desire to remain living at home for as long as possible. The challenge for health and social care systems is how best to provide home care; what supports can be provided and how cost effective are these supports? The HSE-Genio Dementia Programme was established in Ireland in 2012 to develop and test new ways of supporting people with dementia so that they could remain living well at home for longer. A combined strategy of innovation funding, capacity building and research and evaluation was used to support nine sites in Ireland to develop community and home-based, personalised supports for people with dementia and family carers. The sites were encouraged to develop Dementia Consortia; multi-stakeholder groups using collective impact principles to develop new models of care. To date these sites have provided 74,000 hours of personalised supports to over 1,400 people with dementia and a similar number of carers. Evaluations have shown the benefits for the person and family carer (Cahill et al 2014 a,b; Cullen et al 2016) as well as demonstrating significant cost effectiveness (O’Shea and Monaghan, 2016). A service design process combined evidence and practice to identify key elements of personalised community and home-based supports and how to implement them effectively. These elements included; a Dementia Consortium; care co-ordination; public and patient involvement; in-home supports; social connections; post-diagnosis information and support; and sustainability. This paper will describe the Community Supports Model which underpinned this new direction in community-based care across the nine sites, along with the supporting evidence on social and economic value. This model is currently informing the roll out of the National Dementia Strategy in Ireland and provides a template for providing person-centred supports to people with dementia, allowing them to live better and longer in the community.

P23.2. Crisis support in dementia: an innovative model of dementia care with greatly improved outcomes for people with dementia

QAZI Afifa, KISS Ilona

Introduction:  The global cost of dementia is increasing. Health and social care budgets are under immense pressure, and there is a pressing need for spending the money available more efficiently. Moving care and treatment of people with dementia from hospitals, which are hugely expensive to community settings releases resources that can be used to improve the quality of care for people with dementia.  

The Dementia crisis support team model delivers better outcomes for people with dementia and achieves significant cost savings.

Model of care: This innovative model of dementia care is a crisis intervention and support team for people with dementia in the community, integrating physical and mental health needs of people with dementia with the aim of reducing the need for hospital admissions. Referrals are accepted from G.Ps, community matrons, district nurses, ambulance services, care homes, social services, voluntary agencies and carers for people with dementia. A rapid, multidisciplinary input avoids as many admissions as possible; plus in-reach into acute and mental health wards facilitates early discharge hence cutting down the length of stay.

Conclusion: The team has made a huge difference to the quality of care for people with dementia.

The team has reduced admissions to mental health beds by 1000 bed days in 2015/2016 enabling the closure of a 24 bedded mental health unit releasing a cost of £2.5 Million. Admissions for people with dementia to the acute hospital have been reduced by 100 in 2015/16 which is a cost saving of £0.35 Million. The length of stay in hospital has been reduced by 832 days and saving in terms of excess bed days is £125, 000.

This model can be replicated and implemented in any health economy with benefits to patients and cost savings.

The team won the HSJ Award for Specialist services redesign for 2016 which is the highest award in Healthcare in U.K. It features in a DOH video on good practice in dementia

P23.3. The need for holistic care provision to meet the unmet needs of community dwelling people with dementia

Hopper Louise, JOYCE Rachael, JELLEY Hannah, WOODS Bob, ORRELL Martin, IRVING Kate, VERHEY Frans, on behalf of the Actifcare Study Group

Research shows that people living with dementia often do not receive the type, quality and amount of dementia-related services and support required. The Access to Timely Care (Actifcare) JPND-funded project examined the (un)met needs of Irish people with dementia living at home from three perspectives: the person with dementia, a family caregiver and an independent researcher. Forty-three people with dementia (22 females, mean age 74.05, mean MMSE 20.34) and caregiver (33 females, mean age 58.12) dyads participated. The Camberwell Assessment of Need for the Elderly (CANE) was completed at baseline, 6-months and 12-months. All raters reported met and unmet need. Caregivers and researchers also reported supports received. Additional measures included quality of life and caregiver perseverance. People with dementia perceived significantly fewer met needs at baseline (M=4.79) than caregivers (M=8.6) and researchers (M=8.3). Researchers identified significantly more unmet need (M=3.28) than caregivers (M=2.19) and people with dementia (M=0.72), especially psychological and social needs, which were also regularly rated as ‘not the right type of care’. Differences in unmet needs increased with dementia severity. Fewer unmet needs were significantly associated with better quality of life. Caregiver ratings of met need indicated longer care perseverance. Self-care was the only domain in which more help was received from local services than from friends and family. Similar patterns were found at 6- and 12-months. Addressing unmet need positively influenced dyadic quality of life, yet all groups reported high levels of unmet social need and found available services lacking and inappropriate. High levels of met physical need demonstrate a continued primary policy emphasis on solely supporting these needs. Future dementia needs assessment must take a holistic view of the individual and their environment in order to adequately assess the support needed to maintain dyadic quality of life for those living with dementia in community settings.

P23.4. Challenges and facilitators to the implementation of the Irish national dementia strategy


The Irish National Dementia Strategy, published in December 2014, aims to concurrently develop multiple aspects of dementia care to ensure a holistic approach to the development of dementia services and supports in Ireland.  Underpinned by the principles of personhood and citizenship, the strategy is a blue-print to improve the lives of people with dementia and their family carers.

This presentation will outline the work of the National Dementia Office (NDO) which was established in 2015 to translate the national strategy into practice across a five-year period.  The NDO works with partners and collaborates overseeing the implementation of a range of clear, deliverable objectives which fall under each of the strategy’s six priority areas, namely (i) better awareness and understanding, (ii) timely diagnosis and intervention, (iii) integrated services and supports, (iv) training and education, (v) leadership and (vi) research and information systems.

Work in on-going in each of these priority areas, which includes the development and testing of intensive home care packages for people with dementia, the roll-out of a national public awareness campaign, the delivery of a range of education modules in primary, secondary, tertiary and residential care, a review and mapping of services and the development of a website containing information and resources for multiple stakeholders.

A critical role of the NDO is to ensure work undertaken in separate care areas come together in a coherent manner, avoiding duplication of effort and maximising current resources. The presentation will provide an update on progress in each area and will discuss the distinct challenges and opportunities encountered in implementation to date.

P23.5. Stability of home-based care arrangements for people living with dementia – Results from a meta-study of qualitative and quantitative research


Background: Worldwide most people with dementia live at home and are cared for by their family members. During the whole trajectory of dementia, creating and maintaining a stable care situation is a leading principle of informal caregivers and a desirable outcome of contemporary health care policies. But currently it is unclear what constitutes and influences stability of home-based care arrangements for people living with dementia.

Methods: A working definition of stability of home-based care arrangements was developed in an expert consensus process. Building on this definition a meta-study (synthesis of meta-data-analysis, meta-method, and meta-theory) is conducted to further conceptualize the complex phenomenon. Studies with qualitative, quantitative or mixed-methods design (n=142) were included in the review. (PROSPERO registration number CRD42016041727)

Results: Preliminary results show that the dynamic nature of stability is broadly overlooked in research and there is a lack of studies with a trajectory perspective. The majority of quantitative studies focuses on risk factors for institutionalization, but fails to comprehend the dynamics behind. Qualitative research aims at understanding informal care as a social construction, but pays little attention to its direct impact on whether or not a care arrangement can be maintained over time. Nevertheless the results show that not only dementia itself, but the interpretation and acting of all persons involved as well as the respective health care system and societal and cultural norms strongly influence the stability of home-based care arrangements.

Conclusion: This synthesis illustrates how stability has been understood and approached in dementia research within the last decades. The meta-study guides the development of future research questions and of innovative study designs that will be able to meet the methodological and theoretical requirements of the complex phenomenon of stability. Finally, it provides an empirical and theoretical basis to develop stability promoting interventions.

P23.6. “Beyond four walls”: A community-based model of care and support for people with dementia living at home


With evidence pointing to the lower public costs associated with home care and a growing body of literature suggesting that older people prefer to ‘age in place’, the focus of formal care provision for people with dementia in Europe is increasingly attuned to the home environment and to the local, community sphere as the locus of care. Oftentimes, however, the indirect costs of caring for someone with dementia at home (most commonly borne by family members) is neglected in the discourse, and a comprehensive conceptualization of what high quality community care for people with dementia actually entails is only loosely defined.

This presentation addresses this gap and builds on a comparative, international study carried out by the authors in 2016 with funding from the Swedish Ministry of Health and Social Affairs. Using qualitative methods, including a scoping review of the literature, focus groups and expert workshops, the main aim of the research was the development of a conceptual framework for community care for people with dementia. The framework emphasizes the dynamic care and support needs of the person with dementia and their family carer(s) over the trajectory of the disease, and articulates how the roles and interaction between different stakeholders within the community shifts as a result of these changing needs. The authors identify a number of key aspects—or tension points—of community care that can lead to frictions or tensions between different stakeholders and to inadequate or inappropriate care if not given due consideration by policymakers and service developers, including: differing perceptions of care needs, the desirability of community care and decision-making along the disease trajectory, informal carers as users of services, coordination of care and appropriate care-mix.

Building on the identified key tension points, the authors develop recommendations for both policy action at the macro-level and for the organization of care in the community at the meso- and micro-levels. The framework thus proves a relevant tool for improving national policies related to community-based dementia care, as well as its day-to-day practice.



Last Updated: Tuesday 24 October 2017


  • Acknowledgements

    The 27th AE Conference in Berlin received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Deutsche Alzheimer Gesellschaft e.V. gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche