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PL2. Dementia as a human rights priority

Detailed programme, abstracts and presentations

PL2.1. Involving research participants in research: The example of the EPAD (European Prevention of Alzheimer’s dementia) project

SANDERS Stina

University of Edinburgh, Edinburgh, United Kingdom

Introduction: EPAD is a major Cross-European project creating a cohort of people who are at a high risk of developing dementia. Being a participant in the EPAD study involves a long-term commitment. In order to learn from the experience of research participants, and provide participants an on-going active voice in the project, the EPAD study has set up a Participant’s Panel.

Method: The aim is to have a local EPAD participant panel at every EPAD Trial Delivery Centre across Europe. There are currently 13 Trial Delivery Centres with more centres opening soon. Each Centre nominates a panel representative to feed into the European Participant Panel. There is a representative present from each Centre at the annual EPAD General Assembly.

Results: Currently, there are three panels running across Europe with others being in the set up phase. Each with 6-8 members in the panel. The panels meet twice a year to provide feedback on good and bad elements of the study experience and make recommendations for improvements; ensure that participants are represented in decision making which may affect them and review documents related to the study aimed at participants.

The meetings so far have covered arrangements for the panel work, update on the study progress and obtaining feedback from the participants regarding specific study procedures (e.g. undergoing a Lumbar Puncture and an MRI scan)

Conclusions: The EPAD study has established terms of reference for the Participant Panel to ensure consistency across each centre, with a central panel drawing together members from each centre. The voice of the panel is proving to be a valuable source of information in addressing crucial aspects of the success of a longitudinal cohort study such as participant experience, retention of research participants and offering participants a chance for meaningful engagement with the direction of the study.

PL2.2. Promoting a human rights based approach to dementia through the active involvement of people with dementia

ROCHFORD-BRENNAN Helen

European Working Group of People with Dementia, Ireland

Background: Many people living with dementia are denied their human rights from the time of diagnosis. As they live with the disease they navigate systems and structures which are not person centred and rights based. As a result, either deliberately or by omission their human rights are denied.

To counteract this, people living with dementia must be actively involved in all aspects of the disease. From research to healthcare, legislation to awareness, the lived experience must be valued and have the power to influence.

Content: As former Chair of the IDWG and current Chair of the EWGPWD Helen Rochford Brennan has been a pioneer in campaigning for the human rights of persons living with dementia.

Helen has highlighted the incomplete implementation of the UN Convention on Human Rights of Persons with Disabilities.

In this presentation Helen will point out human rights violations such as the lack of statutory rights to homecare the inappropriate prescribing of Psychotropic medicines and the inability of persons living with dementia to be active participants in their community.

She will speak about what is good practice for involving people with dementia – appropriate supports, a non tokenistic approach and a value placed on experts by experience.  Helen and her colleagues on the EWGPWD are strong advocates of PPI, they believe co-creation and robust collaboration is the only way to ensure that the human rights of persons living with dementia are a research priority.

Human rights can be a theoretical, abstract concept that for some people living with dementia seems far removed from their daily reality. Helen will speak about how quality engagement with just such people will lead to the human rights of many more people living with dementia being met.

PL2.3. Human rights in Spanish health and social legislation

VICENTE Fernando

Ministerio de Sanidad, Servicios Sociales e Igualdad, Madrid, Spain

In the discussion about ageing, there has been a heated debate at national and international level about whether the existence of specific legal instruments on the rights of older persons and their protection is necessary. Reasons for not having such instruments include the fact that people have rights because they are human beings regardless of age, gender, language, sexual orientation, capacity, abilities, etc., and instruments and specific norms for the protection of the older people already exist (e.g. International Human Rights Conventions of the UN, Charter of Fundamental Rights of the EU of 2010, Constitution of 1978, Civil Code, Penal Code). Nevertheless, the existence of sectoral legal norms at international, national and regional level (in the case of Spain) aimed at the protection of groups which are particularly vulnerable, is a reality of the political action that is appropriate to the challenges of the ageing of the population and those which our society is facing. This constitutes a great challenge of Governance in our country, given the diversity of exclusive competences of the State and of the Autonomous Communities (“Comunidades Autonomas”), which hinders the adoption of horizontal measures that deploy their effects and validity throughout the national territory.

PL2.4. Recognising dementia as a disability: ethical considerations and practical recommendations

GOVE Dianne

Alzheimer Europe, Luxembourg, Luxembourg

Alzheimer Europe has long recognised that dementia can lead to disability. Recognising dementia as a disability should enable people with dementia, if and when needed, to benefit from the same kind of protection and rights afforded to other people with disabilities. In 2017, Alzheimer Europe set up a working group of experts in the fields of dementia, disability, ethics, mental health legislation, anthropology, policy making and psychology, and worked closely with the European Working Group of People with Dementia and their supporters, to explore the issue of dementia and disability. This work led to the publication of a discussion paper and recommendations.

The working group called for a progressive and positive change in society’s response to dementia, based on recognition of potential disability, accompanied by a change in attitudes and the provision of coordinated, appropriately funded and properly monitored polices, services and support, thus leading to a positive change in the lived experience of dementia.

In discussions about dementia as a disability, there is often an emphasis on empowerment and society’s responsibility to make ‘reasonable adjustments or amendments’.  However, not everyone with dementia wants to identify with disability. Doing so can have an emotional and psychological impact. The working group suggests that, overall, the ethical, practice and policy benefits of viewing dementia as a disability, such as the opportunity to campaign for rights, advocate for change and be covered by legislation promoting human rights (e.g. based on the CRPD), outweigh the disadvantages but that It is important to recognise and respect difference and individual choice.

In this presentation, I will provide a balanced overview of some of the main ethical considerations and practical recommendations related to viewing dementia as a disability covered in Alzheimer Europe’s discussion paper.

PL2.5. Dementia and intellectual disability - Valuing the perspectives of people with intellectual disability

WATCHMAN Karen

University of Stirling, Scotland, United Kingdom

The link between intellectual disability, particularly Down syndrome, and the early-onset of dementia has been known for many years. Approximately 1 in 3 people with Down syndrome receive a diagnosis, or suspected diagnosis, of dementia in their fifties. Less is known of the perception of individuals who have an intellectual disability and dementia. We value the contribution of self-advocates with dementia, both individually and collectively. Yet, such advocacy is not yet prevalent among people with intellectual disability and dementia, or among their families. Such omission limits our understanding of the experience of dementia, whether the diagnosis is their own or in their peers. This leads to an overreliance on proxy reporting; something considered to be a backwards step in person-centred and rights-based work by an International Summit on Intellectual Disability and Dementia convened in Scotland in 2016. It means, for example, that the voice of people with intellectual disability is not reflected in national dementia plans or strategies. This poses the question of what appropriate and effective post-diagnostic support looks like for people with intellectual disabilities, and how do we know?

Recognising that countries across Europe are at different stages in supporting the inclusion of people with intellectual disabilities who do not have dementia, collaborative projects in Scotland and USA demonstrate ways in which the perspective of people with intellectual disabilities affected by dementia may be sought in practice and in research. Valuing perspectives in this way reinforces the importance of ensuring that recommended best practice for people with dementia also applies to people with an intellectual disability. This includes a timely diagnosis which is shared appropriately, individualised post-diagnostic support and the need to include the perspective of persons with intellectual disability in decisions that affect their future.

 

 
 

Last Updated: Wednesday 14 November 2018

 

 
  • Acknowledgements

    The 28th AE Conference in Barcelona received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe, CEAFA and Fundación Alzheimer España gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
 
 

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