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PL1. Integrated Care

Detailed programme, abstracts and presentations

PL1.1. The commitment of the Scottish Government to post-diagnostic support

Foster Angiolina

This presentation will outline the Scottish approach to transforming post-diagnostic support as part of Scotland’s second 3-year National Dementia Strategy, published in June 2013. From 2007, initial activity to improve dementia services was focussed on driving up diagnosis rates, with a national target in Scotland from 2008-2011. This was achieved nationally and around 64% of people with dementia in Scotland are now being diagnosed. In tandem with this work on diagnosis, pilot work told us that people were reluctant to get a diagnosis of dementia because they could not easily see that the benefit of getting access to effective care, treatment and support was greater than the overall detriment to their lives of knowing that they had dementia.

Although a diagnosis of dementia has a huge impact on individuals and families, timely and sensitive diagnosis, backed by effective and holistic post-diagnostic support, is vital in helping people build their personal resilience and knowledge about dementia and enabling them to live a good quality of life at home for as long as possible. In order to help to transform dementia services in this area – and to help sustain and build on the diagnosis rates achieved – the Scottish Government introduced a first national commitment on post-diagnostic support. It is underpinned by a 3-year national health target that everyone newly diagnosed with dementia from 1 April 2013 will receive a minimum of a year’s worth of dedicated post-diagnostic support, coordinated by an appropriately skilled Link Worker. This support received will be delivered in line with Alzheimer Scotland’s 5 Pillars of post-diagnostic support and will help people adjust to a diagnosis, connect better with services and plan for future care. The presentation will also outline how we are testing and evaluating models of intensive, community-based services for people in the moderate to later stages of dementia and how this links with work by the Scottish Government and its partners to demonstrate the value of a whole-system approach to redesigning dementia services; as well as wider work to integrate health and social care in Scotland.

PL1.2. Dignity-enhancing care for persons with dementia and its application to advance directives

Gastmans Chris

The number of older people continues to increase worldwide. Given that older people are especially prone to suffer from dementia, many countries will be confronted with a rising number of people with dementia. This demographic evolution results in important new responsibilities for older people in general and people with dementia in particular. What do they consider as good care and as a good death for persons with dementia? What do they consider as their own responsibility in ‘preparing the future’? What do they think about legal regulations regarding patients’ rights and advance directives, and what do these legal frameworks mean for their own situation? In our contribution, we will propose a comprehensive clinical-ethical framework to deal with the above mentioned questions about daily care and end-of-life care for persons with dementia. First, we briefly outline the general philosophical-ethical background from which we developed our framework. Against this background, we identify and explore three corner concepts that must be observed in an ethical approach to daily care and end-of-life care for persons with dementia: vulnerability, care, and dignity. Based on these concepts, the ethical essence of dementia care practices is described as ‘providing care in response to the vulnerability of a human being in order to maintain, protect, and promote his or her dignity as much as possible’. A central topic that is used in order to make our ethical analysis more concrete and applied is that of advance directives.

PL1.3. Dementia Palliative Care: Consensus building and signposting the future direction in Ireland

McGettrick Gráinne

The term of “dementia palliative care” has been used as a way of describing the means of appropriately addressing the palliative care needs of the person with dementia and their family throughout the disease trajectory. It reflects the qualities of person-focused dementia care and the holistic focus of palliative care.

The Alzheimer Society of Ireland (ASI) and the Irish Hospice Foundation (IHF) undertook a six-month feasibility project to build a consensus and to signpost the direction of dementia palliative care. The report was published in 2012. The aim of the project was to gain an understanding of the multiple perspectives involved, start to build consensus as to what is “dementia palliative care” and identify and signpost a future programme of work. Through a process of consultation and dialogue with stakeholders including specialists, multi-disciplinary healthcare professionals, service providers and family members, a number of issues emerged. The needs of people with dementia and their families are complex and cross several service frameworks over the duration of their journey with dementia. Partnerships, networks and shared care models between dementia and palliative specialists and services, based on need and not diagnosis is essential to support end of life care and planning for people with dementia. Reaching a consensus and building a conceptual model of “dementia palliative care” is challenging given the complex nature of the condition, the existence of co-morbidities and the contested view as to whether people die “with” or “from” dementia. It is accepted that dementia is an irreversible, progressive and life limiting condition.  Although participants engaged in the project acknowledged that a palliative approach to care should be available to people with dementia from early in the disease trajectory, the challenge identified by the project is to determine mechanisms for the wide range of service providers involved in the care of people with dementia to introduce this approach in a timely, sensitive and appropriate manner.     

Currently, there is no systematic approach to meeting the palliative needs of people with dementia and their families within the healthcare system in Ireland but within the system are pockets of informal partnerships and networks between services and disciplines that support good end of life care for people with dementia. Collaborations across services and disciplines, with a shared vision of person focused care, based on need and not diagnosis, demonstrates the potential to develop integrated partnerships and models of shared care that could form the foundation for a model for dementia palliative care.  From this work, there was a clear agreement for the need to building understanding, knowledge, skills and sectoral capacities in order to respond to the specific needs of people with dementia.  Therefore, in terms of signposting a future work programme, four key domains were identified including services, education and training, research and policy advocacy. 

PL1.4. Improving access, care pathways and social care for people with young onset dementia

Parkes Jacqueline

While dementia is often associated with older people (>65 years), it is estimated that 2-7% of diagnoses, in the UK, are made in individuals of working age (Alzheimer’s Society, 2012). Conservative estimates of current figures (UK) for people with YOD are 15,000, but studies suggest numbers could be as much as a third of the total population for all types of dementia (Sampson et al 2004; Jefferies & Agrawal, 2009). The World Health Organisation (WHO) estimates that the real incidence of younger people with dementia can be 2 ½ to 4 times higher than registry studies reflect.

Dementia in younger people is more difficult to recognise than late onset dementia (LOD) in the early stages of the disease. Although 60% of patients typically present within 12 months of onset of symptoms, many can take up to 4 years or longer to receive a confirmed diagnosis (Kristensen, 2012; van Vliet et al., 2012). Factors contributing to such delays include younger age and atypical presentations; a broad differential diagnosis and behavioural (van Vliet et al., 2012), non-cognitive and psychiatric presentations are common in this group, even for common dementias. Furthermore, lack of awareness and lack of education among GPs and other professionals, multiple and mis-directed referral into care pathways and the atypical patient profile all contribute to delayed or mis-diagnosis (Fardil et al., 2009, Harris & Keady, 2004, McMurtray et al., 2006, van Vliet et al., 2010). The increasing availability of new biomarkers (Jack et al., 2011; Sperling et al., 2011) raises exciting prospects for more accurate and earlier diagnostic investigation in dementia (Danish Health and Medicines Authority 2008). However, at present, treatment for dementia remains largely symptomatic, thereby emphasising the professional and ethical obligation for comprehensive services. The psychosocial and personal impact of the illness on a younger person is known to have ‘devastating consequences for productivity, family and society’ (Fardil et al., 2009, van Vliet et al., 2011, Bakker et al., 2008) as the individual experiences significant alterations to their sense of self, feelings of social isolation and dependency, and a ‘lack of meaningful occupation’. Such alterations impact on relationships within the family structure, including parenting, and maintaining social networks, and participation in civic society (Harris & Keady, 2004). Experiences of individuals and their carers is rarely considered (Kaiser 2007), yet the stress of caring for people with young onset dementia (PwYOD) (Bakker et al., 2008) is extremely high, perhaps even more so than in cases of LOD  (Freyne et al., 1999, Harris & Keady, 2004, Ratnavalli et al., 2002, Tindall & Manthorpe, 1997; Van Vliet et al 2010). 

The stories of carers for PwYOD frequently illustrate the enormous physical, psychological, and social impact the disease process has on both the individual with the diagnosis and their family. Their stories describe confusion following diagnosis, social isolation, and a lack of specialist support from the formal health and social care providers for those with a younger onset diagnosis. Studies also support the view that the caregivers of individuals with YOD frequently experience difficulties in receiving a timely diagnosis (Van Vliet et al 2013); and can experience challenges in accessing appropriate specialist support from traditional formal health and social care services following diagnosis (Bakker et al 2008). Clearly, there is a need to raise special awareness to the formal and informal care experiences of people with YOD and their carers, in order to raise the profile of the need for more rapid access to specialist social and psychological support to both the individual with YOD and their primary caregiver.

Based on the findings of some work undertaken by the Dementia Research Network at the University of Northampton (UK), it has been identified that individuals with young onset dementia and their carers wish to be actively supported in re-building normal social networks following initial diagnosis, while receiving timely and appropriate access to formal integrated care pathways. This presentation will present the findings and recommendations which describe the impact diagnosis has made to the quality of life and life choices for both the PwYOD and their carers, and the development of specific tailor-made community-based social interventions, which are designed to promote normalisation and social connectedness.



Last Updated: Monday 25 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