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Coordinated care in the community

Diagnosis, post-diagnostic support

This theme was one of the most commonly covered across all strategies and included the organisation and structure of services, how best they should be coordinated, as well as the move away from institutional-based care to community-based supports and services.

Such is the complexity of these issues and the breadth of approaches in each country, there was considerable overlap with other sections, including PDS, residential care etc. As those aspects have been covered in a separate subsection, they have not been included here, unless they relate to either the issue of coordination or the transfer of services away from institutional settings to community settings.

Coordination between services

Coordination between services was a recurring theme within this section, applying between not only health and social care sectors, but also at times between primary and secondary healthcare. Many of the strategies did not explore the detail of how their commitments would be operationalised, however, the information below captures some of the different components which were included.

A number of strategies focused on the need for multidisciplinary teams (MDTs) in supporting people with dementia throughout the course of the illness. Flanders, Israel, Italy, Malta, Norway and Wales, particularly emphasised team approaches to caring for people with dementia in community settings (including home-based care, intermediate care and, to a lesser degree residential facilities) drawing on the input across health and social care professions. The Cypriot, Czech, Northern Irish, Portuguese, Spanish (neurodegenerative) and Swiss strategies equally focused on the need for networks of services which variously included elements such as GP involvement, counselling, social services and day centres, to ensure that the person with dementia and their families received the appropriate level of support.

In addition, this approach was contained within the strategies of Flanders, Israel and Scotland, however, with a single professional responsible for coordination and continuity of care. Flanders proposed creating dementia-specialist practitioners to coordinate home-based care services, Israel identified the need to create a new “nurse coordinator” role, with Scotland having a “Dementia Practice Coordinator” as part of its “8 Pillars Model”, which creates a single practitioner to coordinate across health and social care services. Finland’s system also noted the importance of case workers to coordinate support both for the person with dementia and the caregiver.

In addition, the  Northern Irish and Portuguese strategies both identified care planning as a means of ensuring better coordination and continuity of care for the individual. The former specifically noted the use of shared assessments across health and social care as a means to achieving this aim.

The English strategy gives GPs a primary role in ensuring coordination and continuity of care for people with dementia, as part of a wider commitment to ensure that every person has access to a named GP. The Portuguese strategy also proposed a proximity model for the responsibility of care, though noted that this role could be carried out by people other than GPs. Whilst not necessarily providing a lead role, the Czech strategy and German strategic document also noted the importance in involving GPs in the coordination of care for people with dementia and their carers.

Specific coordination across organisational structures was a focus for some strategies including that of Norway which examined the integration of primary health and care. Similarly, Northern Ireland and Wales also acknowledged work around integrated boards with responsibility for health and social care to ensure better coordination of services, with the former placing emphasis on the commissioning of services to achieve this goal. On a similar theme, the German strategic document and the Spanish neurodegenerative strategy both indicated that municipal and regional governments would take on greater responsibility in the provision of health care, with the former having a focus on rural areas, to better coordinate provision in their regions.

Austria and Italy were the only strategies to propose the development of quality standards in relation to integrated networks of care and support between providers and sectors.

Germany and Italy focused on the importance of information sharing as part of this process of coordination. The German strategic document focused on institutional information exchanges whilst also identifying the importance of information sharing between statutory organisations and peer support groups. As part of this, care and service providers committed to reducing unnecessary bureaucracy and creating more efficient care documentation. The Italian strategy more specifically focused on the need for local information structures to be accessible, which would improve transparency.

The French neurodegenerative strategy was broader in its aims with regards to the coordination of services for people with neurodegenerative conditions, however they were broadly consistent with those in the dementia-specific strategies. The strategy committed to ensuring a country-wide guarantee of access to appropriate care, with a focus on access to specialist centres and resources, as well as improved responses to individual needs.

Community-based care and support

This section examines some of the measures and commitments within the strategies aimed at establishing, improving or supporting community-based care as the primary way of providing services and supports for people with dementia, their families and carers.

General commitment

Some strategies contained only commitments towards the principle of community-based care and support. Scotland’s strategy contained a high-level commitment to supporting people with dementia to stay in their own homes for as long as possible, focused on reducing delayed discharge and unscheduled bed days, and strengthening community care. As part of this, there was a commitment to disseminating learning from previous testing of a model of community-based support (the “8 Pillars Model”). Similarly, the English strategy committed to increasing the number of people with dementia being able to live longer on their own with a greater focus on independent living. The Dutch strategy also contains a focus on keeping people at home for as long as possible, with case management seen as the key to ensuring high-quality and person-centred care provided by both professional and informal care.

In addition, the Austrian strategy contained a high-level principle of ensuring people with dementia were able to live in communities which promoted participation and autonomy to the greatest possible extent, with high-quality care guaranteed irrespective of where the person resides. A similar approach was present in the Welsh strategy which identified the need to ensure that health and social care pathways were in place to ensure services were in place to support people with dementia.

Service specific

Of the strategies which addressed the issue of community based-supports, the majority focused on specific service offers or organisation of services. Similar approaches and themes have been grouped together in the following section.

Home care/care at home

A number of commitments within the strategies concerned the provision of care at home/home care services in some capacity. The Irish strategy committed to examining how to most effectively use home care packages and respite care to allow people with dementia to continue living in their own homes and communities for as long as possible. The Greek strategy also places a responsibility on municipalities to create home care services which link with existing supports, services and primary care.

Some of the strategies specifically emphasise the importance of specialist dementia care at home. For example, the Flemish and Maltese strategies proposed the establishment of specialised support programmes, with a specific focus on high quality home care support. Similarly, the Cypriot strategy outlined the provision of specialist home care services which would encompass specialist nursing care, Allied Health Professional support etc. The German strategic document also committed specific funding from the long-term insurance to support 3,000 communities with mobile nursing care and grants for people living in communities.

The Israeli strategy proposed similar aims in terms of improving home care, however, its approach was slightly different as it committed to provision of more hours of care to patients requiring constant supervision and re-examine the assessments to take greater account of cognitive function within the assessment for support.

The Norwegian strategy commits to a three-year programme for developing and testing models for home care services intending to test different ways of working and organising home care services, taking into account each family’s situation, needs and resources.

Day care/day services

The Portuguese strategy focuses on proximity responses, centred on both home care and day units, specialising on rehabilitation or maintenance programmes, specifically targeted at people with dementia. Similarly, the Maltese strategy focuses on increasing the number of day centres available for dementia management and care, whilst the Norwegian strategy also commits to extending the day services to accommodate the needs and wishes of people with dementia. Additionally, the Israeli strategy emphasised the importance of developing a “care package” for people with dementia, provided under its health insurance law, which would include day care centres.

Additionally, the Danish strategy contains a specific commitment on the need to provide counselling and activity centres for people with dementia and their carers, with funding also allocated to ensure involvement and support through social and physical activities. As part of this, the strategy also includes specific funds to increase the number of places offered in relief day care centres and more support for younger people with dementia.

Community health

A small number of strategies outline the more clinical aspects of dementia management within community settings. For example, the Danish strategy outlined the need for interdisciplinary units for the outpatient surveillance and treatment of dementia within communities. Similarly, Cyprus proposed community-based monitoring of dementia from prevention through to treatment, including specialist supports through specific centres for nursing and Allied Health Professional input, with other care coordinated by “Dementia Management Consultants”. This mirrored the approach outlined in the Portuguese strategy which proposed the use of continuing care teams or community care units. Although proposing a network of services rather than a specific team, the Swiss approach is broadly consistent with a strong focus on ensuring coordination of services across both health and social care.

Finland’s proposals were broadly in line with the proposals above, differing only insofar as caseworkers were expected to coordinate the provision of support, care and services for the affected individuals in partnership with a physician. In addition, the local authorities have responsibility for providing 24 hour care for people with dementia according to national guidelines, with a view to reducing the amount of residential care and to increase the availability of community-based treatment alternatives.

The Spanish neurodegenerative strategy, focuses on the commissioning of rehabilitation and social services throughout the course of the disease, the creation of a directory of both generic and specialist services, as well as complete assessment and referrals made on individual needs. Uniquely, it also calls for the inclusion of a rehabilitation plan as part of individual care plans.

Night services and respite

A number of strategies identified the need to provide respite services for carers of people with dementia. The Luxembourg strategy proposed provision of a number of “vacation beds” for people with dementia, whilst the Maltese strategy specifically highlighted the need for more institutional respite. The Norwegian strategy highlights that informal care programmes will be used to develop more flexible respite arrangements and measures for providing training and guidance to carers. As part of its ’teams around the individual’ approach, the Welsh strategy commits to ensuring that families and carers can access respite care that meets their needs and those of the person living with dementia, proposing to review existing provisions.

Additionally, the Luxembourg strategy committed to considering the specific needs of people with neurodegenerative illnesses in its roll-out of a ‘Night Guard’ service, following from previous testing, which had identified the need for such a service in the interests of people with dementia and the health and well-being of their carers. Similarly, Malta proposed development of night-time shelters in a number of localities that specifically cater for individuals with dementia and their caregivers.

The Swiss plan calls for the creation of flexible, financially affordable regional respite services for day and night care, oriented to specific needs of people with dementia, in a familiar environment (including short-term stays, holiday beds, day and night structures, as well as day and night services). Similarly, the Israeli strategy calls for some day care centres to serve as respite venues, both for planned visits and to respond to crisis situations.

It is notable that the Cypriot strategy is the only one to define the entitlement of carers to respite, setting out that carers should receive 20 days of respite per year from specialist centres which are able to support the person with dementia.

On this theme, the Northern Irish strategy is unique in its reference to commitment to ensuring that short breaks are available for people with dementia and their carers.

Housing

Housing is an area given attention by some strategies in two main ways: adaptations of existing houses in which people live and ensuring that future housing stock/developments are suitable for people with dementia. Both of these elements were present within the Welsh strategy. To a lesser extent, the German document also identified the need for housing stakeholders to be involved in the planning process of house building and urban planning, alongside health and social care service providers. Similarly, the Northern Irish strategy also sought to identify mutual priorities with housing partners.

The Scottish strategy refers to the government’s own specific housing strategy for older people and how this will help ensure that older people are able to live in their own homes for longer.

Other

Some elements within the strategies did not correspond to other strategies or did not fit in within the subsections above. As such, they have been included below.

Both the Irish and Slovenian strategies identified that both formal and informal social supports are crucial, with the need for self-help groups, advisory and information offices needing to complement the expansion of existing social services, with the former adopting a health promotion model.

The Norwegian strategy commits to creating a competency and innovation grant scheme for municipalities to strengthen municipal capacity and provide opportunities to develop sustainable, high-quality health and care services.

The Irish strategy also committed to the creation of a workstream on dementia care as part of its integrated care programme for older people, to provide leadership across all directorates. It also committed to the regulation of home and community care services for older people.

There was some reference within the German strategic document and the Maltese strategy about the need for greater use of “active citizenship” and volunteering as a means to improve supports for people with dementia and carers living within the community. The Italian strategic document similarly identified the need to sustain association and volunteer networks.

The Irish strategy considered, based on previous testing, the provision of “Dementia Advisors”, a number of whom would be dedicated to the needs of people with early-onset dementia. On a related theme, the Northern Irish strategy also commits health trusts to working to develop regional care pathways for younger people with dementia.

Both the German and Italian strategic documents identified the needs around information provision and sharing as a crucial aspect of the provision of care. Specifically, the Italian strategy committed to creating a service charter providing information on available services in order to ensure the transparency of service offers, whilst the German document identified the need for information sharing between formal and informal services to be improved. On a similar theme, Malta’s strategy proposed an updated directory of available dementia services to be distributed amongst healthcare professionals, individuals with dementia, their caregivers and family members.

The German strategic document also committed additional funding support for municipalities and rehabilitation providers to provide supports for carers, to keep people with dementia in their own homes for as long as possible.

The Dutch strategy also referred to an ongoing programme of work which aimed to improve care and support for people with dementia, through a focus on funding and organisational structures in relation to health insurers. Related to the funding of services, the Swiss strategy contained a specific commitment to guaranteeing the financial viability of needs-appropriate services for people with dementia, whilst also committing to reviewing the appropriateness of existing finance systems and how they compensate services necessary for dementia, including respite and counselling services.

 

 
 

Last Updated: Monday 29 April 2019

 

 
  • Acknowledgements

    This report received funding under an operating grant from the European Union’s Health Programme (2014-2020). The content of the Yearbook represents the views of the author only and is his/her sole responsibility; it cannot be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains
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