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P13. Dementia strategies and policies

Detailed programme, abstracts and presentations

P13.1. The extension of the French Alzheimer plan to neurodegenerative diseases

Desana Marie-Odile

In France, for many years, the onset of cognitive disorders was considered as a natural part of growing old. Since 1985, France Alzheimer held the position for the recognition of dementia as a real disease quite independent of aging and mental illness. Before 2004, Alzheimer and related diseases were associated to psychiatric disorders, and then the second Alzheimer plan has recognised Alzheimer’s disease as one of the 30 diseases whose medical costs are reimbursed at 100%. On September 2012, the President, François Hollande has announced the continuation and evaluation of the third Alzheimer Plan 2008-2012, and its extension to neurodegenerative and psychiatric diseases.

Further to these statements, France Alzheimer and Médéric Alzheimer Foundation, key players in the field of Alzheimer's disease in France, have jointly realised a report to determine the scope of neurodegenerative diseases based on their level of closeness with Alzheimer’s disease. A coherent group of neurodegenerative diseases has been identified according to their level of closeness with Alzheimer's disease. It includes Alzheimer and related diseases, Parkinson's dementia, dementia with Lewy bodies, Huntington's disease, vascular dementia, but also adults with trisomy 21 or Down syndrome who developed Alzheimer's disease.

Firstly, there are common clinical signs between these neurodegenerative diseases: cognitive symptoms, mood changes, behaviour, sleep and eating disorders. And secondly, these diseases converge to the loss of autonomy. Psychiatric diseases have not been included in the scope defined in this report. The report highlights in particular the primacy of cognitive disorders that distinguishes dementia from mental illness. Furthermore, methods of support and structures are different and require radically different approaches. In this report, France Alzheimer and Médéric Alzheimer Foundation emphasize particularly the need to preserve the specificities of each pathology in supporting and taking care of patients and their families. To this end, the transposition of some devices to other diseases should be preferred rather than opening these devices to other patients.

P13.2. The role of dementia support workers in the community in removing the barriers to isolation and exclusion following diagnosis

Jones Kerry, Lang I.

The first ever National Dementia Strategy for England was launched in 2009 with a five year plan to transform the quality of life for people with dementia, their carers and their families. The strategy set out key objectives which included ‘enabling easy access to care, support and advice following diagnosis (Department of Health, 2009). To address the challenge faced by people with dementia and their carers in accessing services in the community, the development of Dementia Support Worker roles was initiated in several areas, including a site in the southwest of England.

By aiming to reduce the sense of exclusion people with dementia currently face due to barriers in accessing services in the community, Dementia Support Worker’s provide a named contact for a person with dementia and their carers following diagnosis who can then signpost to appropriate services, offer care and support and assist in facilitating engagement with other services including health and social care.

This paper discusses the findings of an evaluation of the effectiveness of the Dementia Support Worker’s role. This research suggests role has the potential to offer a crucial initiative when people are provided with a highly responsive, individualised and timely service when the factors which facilitate an effective service are embedded. This is dependent upon removing the barriers to an effective service and ensuring the provision of high quality supervision to support the Dementia Support Worker role and active integrated working with health and social care and possession of person centred attributes.

P13.3. Creating dementia friendly communities: Findings from the UK

Chandaria Karishma, McNamara George

Dementia is now firmly on the public and political agenda. In March 2012, the UK’s Prime Minister’s launched a challenge on dementia and increasingly the focus is on creating dementia friendly communities. All across the UK, people are working together to make their communities more dementia friendly. These areas have tapped into a swell of community commitment for improving the lives of people living with dementia. Importantly they are building an understanding and awareness of dementia; where people with dementia and their carers are encouraged to seek help and support; feel part of their community; and have more choice and control over their lives. In its report, to be released in September 2013, Alzheimer’s Society has listened to people with dementia and their carers to uncover what it means to them to live in a dementia friendly community. Research for this report involved a survey of over 500 people with dementia, individual and group interviews with people with dementia and their carers, and a public poll of over 2’200 UK adults.

While many communities are brokering new partnerships, people with dementia still face significant challenges to engaging more actively in their community. Hosting an Alzheimer’s Society stand and poster presents an opportunity for international shared learning about the experiences of people with dementia and the factors that are critical for creating a dementia friendly community. While the findings of the report are currently under embargo, the report captures evidence and examples of good practice that demonstrate the practical ways we all can make our communities more dementia friendly. All of Alzheimer’s Society work is grounded in the experience of people living with dementia and their carers and within this report a particular focus has been given to hearing from people with dementia from seldom heard groups.

P13.4. Making dementia a global public health priority: Translating global actions into local energy

Wortmann Marc, Splaine Michael

Several global policy streams are shaping the debate about dementia as a public health priority, from the expected adoption in May 2013 of a new WHO Non-Communicable Disease Plan and WHO Global Mental Health Action Plan, recommendations soon to be published from a major meeting on long term care sponsored by WHO as well as continued European/global initiatives to define and measure healthy ageing and age-friendly communities.  This session will brief participants on the key points in each of these work streams, tease out their significance for country level and local action, and identify key documents and sources of additional information.

P13.5. Why case management fits in a dementia-friendly society

Bruijs Anne-Marie, Meerveld Julie

Past - building: Case management dementia was one of the aims in the Dutch Guideline for Integrated Dementia Care (National Programme). Why and how did we start and how could we finance case management dementia? We explain the consequences and how we could build such a professional worker.

Present – development: How many case managers work in the Netherlands? How do they work and get payed. Can we see a change in their performance. Which are the success factors and what can we learn from the past?

Future -  acceptance: How can we guarantee case management dementia for the future (financial as well as the function). We will show some insights in the Dutch economic and political situation and the impact on case management dementia. At the moment there is a tending movement towards a civil society. This is because of the decentralization of governmental tasks. At this point there’s a serious effort to empower citizens and informal caregivers. Case managers can help in this process. But It also gives us the opportunity to introduce the dementia-friendly society.

P13.6. Impact of the economic crisis on carers of dementia patients in Greece

Efthymiou A., Vlachogianni A., Potamianou D., Papagianni M., Vamvakari E., Zoi P., Kanellopoulou S., Nika A., Touriki E., Margioti E., Nikolaou C.

The current economic crisis has had devastating effects on the Greek Welfare State. Older people, people with dementia and their carers are experiencing the consequences of worsened socio-economic conditions: salary and pension cuts, public health cost cuts, taxation and unemployment. At this moment there are 200.000 people with dementia in Greece.  The monthly care cost for autonomous patients is estimated to 341 €, for highly dependent and still living at home patients to 957 € and for patients living in Hospices to 1267 €. Family carers spend on average 168 hours in caregiving per month and paid carers spend 72 hours per month (Kyriopoulos, 2005).

Considering that legislation and social support frameworks were already inadequate prior to the economical crisis, consequences of current recession have multiplied the difficulties carers are facing. The aim of the present study is to present these changes in carers’ and their family members lives during these last three years. A questionnaire was administered to 250 carers, systematic users of Dementia Day Care Centers. Questionnaire items, in open and closed format questions, were chosen by Day Care Center professionals, from carer focus groups and the relevant literature. Results are discussed.



Last Updated: Tuesday 05 November 2013


  • Acknowledgements

    The 23rd Alzheimer Europe Conference in St. Julian's, Malta received funding from the European Union, in the framework of the Health Programme. Alzheimer Europe and the Malta Dementia Society gratefully acknowledge the additional support provided by foundations and companies.
  • European Union