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P2. Post-diagnostic support

Detailed programme and abstracts

P2.1. Development of best practice recommendations to enhance access to formal community care services

MICHELET Mona, RØSVIK Janne, VERHEY,  Frans, DE VUGT Marjolein, MEYER Gabriele, WOODS Bob, WIMO Anders, IRVING Kate, GONCALVES PEREIRA Manuel,  ZANETTI Orazio, SELBÆK Geir, on behalf of the Actifcare consortium

Background and aims: People with dementia and their informal carers are found to use community services, such as home support, day care, respite care or counselling less often than medical services even though these services may be very useful in their situation. Studies have found that this group often do not receive services of the type and quality that they need, and that they experience much difficulty accessing home- and community based services. The JPND project Access to Timely Formal Care (Actifcare) has investigated factors related to inequalities in access to services.

The aim of work package 5 in Actifcare was to develop best practice recommendations to enhance access to community care services. 

Methods: The participating Actifcare teams suggested statements describing measures to enhance access based on the deliverables from the other Actifcare work packages as well as their own expertise.  The received statements were processed and phrased into 72 statements for rating by 82 European experts in an email based Delhi process with two rounds of rating. The experts are professional scientific, clinical and administrative experts as well as experts by experience, i.e. people with dementia and informal carers. The European Working Group for People With Dementia provided valuable feedback in the process of phrasing the statements and five of them participated as experts in the Delphi ratings.

Results: Based on the statements that reached consensus in the Delphi process, 26 Best practice recommendations were made.  Measures were taken to safeguard the perspective of the experts by experience in this process. The recommendations are divided into two categories: measures to enhance access directly and measures to enhance access indirectly.

Recommendations for the implementation of the Best practice recommendations have been made for each of the participating countries; Germany, Ireland, Italy, the Netherlands, Norway, Portugal, Sweden and United Kingdom.

P2.2. Self-help groups for people with dementia: peers managing group processes together


As part of an uprising social movement, citizens with early-stage dementia organize in groups for the purpose of self-help, mutual support and advocacy. Unfortunately, efforts to provide space for people with dementia to meet on their own terms are still rare. A common claim in the literature is that people with dementia require vigilant supervision and extensive facilitation to be able to engage in any kind of mutual support because of difficulties/anxiety that may arise. There is an urgent need for empirical research addressing the mutual support that nevertheless takes place in early-stage groups where peers find their own ways of handling difficulties. The aim of this study was to provide empirical knowledge about the group dynamics in a dementia self-help group operating with a minimal extent of professional facilitation. It is a long-term communication ethnographical study of a small-scale self-help group initiative involving people with dementia in Swedish municipal care. Data comprise audio-recordings from four years of regular meetings (47 meetings, 2h each). The analysis focused on sequences where peers managed interactional difficulties with a minimum of facilitation from a professional coordinator. Applied conversation analysis was used to outline interactional strategies. Findings show that participants manage a variety of challenges arising in the self-help group. They adjust turn-taking rules to meet their special needs, collaborate in repair work, and scaffold each other’s narratives. They express solidarity, show compassion, and use humour to cope. They balance difficult topics and feelings with positive feelings and a focus on possibilities and remaining abilities. While citizens with dementia may need help to administrate self-help groups, their own contribution should not be underestimated. With the right support, together they can take great responsibility for the agenda and for the development of their group. This opens for new forms and functions of post-diagnostic support.

P2.3. Dementia care - Improving post diagnostic support

AARNES Gry Caroline, SANDE Victoria

Background: Every year there are approximately 10 000 new cases of dementia in Norway. Most people receive their diagnosis from their GP or an interdisciplinary team in the municipality, called dementia teams. Following a diagnosis, some municipalities provide carer education, support groups and daytime activities but many families living with dementia experience no post-diagnostic support. Therefore, systematic post diagnostic care is one of the focus area in the Norwegian Ministry of Health and Care Services Dementia plan 2020.

Post diagnostic support: Based on inspiration from Scotland’s post-diagnostic support program and the needs communicated from it´s members, the Norwegian health association has started a project, where the goal is to develop a model of support - based on the needs for support communicated by persons with dementia and their carers. Four municipalities, which are diverse in size, geographical placement and how they organize dementia care, are involved in this project, together with Norway’s National Center for Ageing and Health. Support and activities are provided by municipal healthcare services and voluntary organizations, and will be selected after mapping the individual need for support. The model maps the support needs of the person with dementia and their carers in the following areas:

The participating municipalities started the implementation of this model in January of this year. The first evaluation will take place in May.

User participation: User participation is a key element in this project. The views and experiences of people with dementia and their carers have been mapped and integrated into the project by:

  • Dialogue meetings with people with dementia and their relatives
  • In partnership with local dementia organisations.
  • Involvement of person with dementia or carer in working groups at a local level.
  • Carer representative in steering group.
  • Having a close dialogue with the Norwegian Health Association´s working group of people with dementia

P2.4. ‘The Dementia Golden Ticket’- an emerging new model of care


A local clinical review, incorporating extensive public, patient and stakeholder engagement, identified a fragmented care pathway, medically biased, with gaps in post-diagnosis support and insufficient support for family carers. This combination of poor outcomes and high cost care, reflects the national picture, making dementia the biggest economic challenge of today.

In response to these findings, High Weald Lewes Havens Clinical Commissioning Group (HWLH CCG) made a commitment to developing a new model of care that addressed the existing pathway deficiencies and improved the quality of life for people affected by dementia. The Golden Ticket involved developing a new approach to the management of dementia in primary care, (moving from a Secondary Care focus), including multi-agency post-diagnosis community support, with foundations in pro-active care and social wellbeing.

The model includes: interventions to ensure timely access to health and social care pathways; coordinated and supported access to psycho-social interventions; primary care based Review and ‘Blip’ clinics for when patients begin to decline and the new role of the ‘Dementia Guide’, which was introduced to formalise an approach to personalised advanced care planning. Its innovation is based upon a composite approach, which integrates health, social care and the community in a way, which is seamless from the perspective of the patient and carer.

The Golden Ticket model was piloted in Buxted. Results demonstrate the following improvement in outcomes:

  • Quality of life, mental health and wellbeing for patients living with dementia AND carers improved
  • There was a reported improvement in access to information and advice
  • Wellbeing interventions were hugely beneficial to patients and carers
  • 20% reduction in GP consultations
  • 25% reduction in Acute Medical admissions/A&E contacts
  • 20% reduction in medication.

P2.5. Dementia Advisors, leading the way in self-directed support and supporting independence


Information and advice for people who have received a diagnosis of dementia is priority. It helps people cope with the impact of a diagnosis. Where information is supplemented by other support such as help to navigate health and care services it can improve outcomes and reduce stress amongst carers

Alzheimer’s Society Dementia Adviser service provides accessible, accurate information at the point of diagnosis and beyond, supports people to make use of this information and facilitates access to services.  Advisers will also support people through the process of getting a diagnosis.

Some of our services have adopted a ‘triage’ approach - people contact the service by phone when their information needs are assessed. We find that we can meet many peoples’ requirements immediately and only those who require more intensive help are seen face to face. This reduces people’s feelings of dependency and encourages independence.

In 2013 a national evaluation by the Department of Health found: “Dementia Adviser services had a significant role in enabling people with dementia and carers to re-narrate their lives, finding a new life which… had meaning, value and purpose...”

“…services often filled a gap in support…. had a positive impact upon well-being and quality of life and had resource-saving implications.”

In 2016 the New Economics Foundation found that for every pound of investment in our service nearly four pounds’ worth of benefits are created.

We provide Dementia Advisers throughout England, Northern Ireland and Wales, from community venues, memory clinics, GP surgeries or health centres, wherever is accessible. We reach approximately 14,000 people a month through these services.

We have created a model that is replicable and which, because it can be based in any setting, could be re-produced in other countries. We would be willing to speak to colleagues from Europe interested in finding out more.

P2.6. When opportunity knocks: developing and delivering evidence based post diagnostic interventions in dementia: the national occupational therapy experience in Scotland


The increasing incidence of dementia has caused it to feature increasingly as a priority in government policy and national planning for health and social care (Department of Health 2015, Scottish Government 2011). Providing evidence based non-pharmacological interventions which enable people to live well with dementia is recognized as a key part of the response to this priority (Alzheimer Scotland 2014). Similarly ensuring timely access to effective occupational therapy as part of a multi-sectorial approach to post-diagnostic support will feature as the key commitment ‘Connecting People, Connecting Support’ in the Scottish National Dementia Strategy (2017-2020).

Enabling therapists to access appropriate resources, knowledge and support is essential to ensuring that evidence based interventions which maintain a person’s independence and quality of life are provided in the post-diagnostic phase.

Home based memory rehabilitation (HBMR) is an occupational therapy led intervention combining cognitive stimulation and rehabilitation techniques with a range of practical strategies to support independent living.

Since its adoption by one team in Scotland in 2013, a range of resources have been developed. These are now being implemented by occupational therapy services across Scotland as part of a national pilot program aiming to develop the infrastructure and knowledge needed to ensure early access to this therapy.

This presentation will include:

  • An overview of HBMR, the resources and clinical impact.
  • Discussion of the Improvement Approach being undertaken in partnership between Alzheimer Scotland, NHS Dumfries & Galloway and Queen Margaret University.
  • Review of progress, including critical perspectives on the challenges and facilitators associated with trying to ensure equitable access to an evidence-based intervention at a national level in 12 health boards in Scotland.
  • An indication of associated future implementation, evaluation and research plans.  
  • Consideration of how the improvement model and HBMR program could be translated for wider use in Europe.



Last Updated: Monday 23 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