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P23. Rights and dementia-friendly society: Disability and human rights approaches

Detailed programme, abstracts and presentations

P23.1. “I don’t want to be special” - learning from the disability movement on integrating people with dementia

KEOGH Fiona1, ROCHFORD BRENNAN Helen2

1Dr, Galway, Ireland, 2Irish Dementia Working Group, Sligo, Ireland

A human rights approach creates laws and structures to enforce the upholding of rights (for example non-discrimination), but more is needed to ensure the ‘good things in life’ are available to everyone, including people with dementia. These good things include home and family; being accorded dignity, respect, acceptance; a sense of belonging; the exercise of one's capacities; a voice in the affairs of one's society; and opportunities to participate. However, a diagnosis of dementia can lead to stigmatisation and segregation and the loss of these ‘good things in life’.

This comparative paper locates dementia within a rights-based framework influenced by the disability and mental health sectors. It draws on many decades of thinking, research, practice and learning from these sectors, highlighting positive and relevant elements for people with dementia, such as an emphasis on maintaining ability and valued roles. It also identifies the well-intentioned but isolating and stigmatising practices of the past that should be avoided, such as special badges or segregated services.

Significant progress has been made in addressing some of the more pervasive forms of discrimination in disability. For example, normalisation theory is based on the concept of community integration, including the ‘dignity of risk’ rather than an over-emphasis on protection. It gives us language and tools which can be adapted for dementia practice so we can build on four decades of disability experience to make a difference to the lives of people with dementia.

Developing liberating practices and personhood-inspired policy for people with dementia will not be easy. But there are important lessons to be learned from the disability movement that can accelerate new thinking about autonomy, participation and integration for people with dementia. This new thinking can build on personhood ideals; supporting the human rights of the person with dementia, as well as their basic humanity.  

P23.2. Introducing Material Citizenship: Rights based practices for people with a dementia living in care homes

LEE Kellyn, BARTLETT Ruth, LUFF Rebekah

University of Southampton, Southampton, United Kingdom

Questions such as what does citizenship look like in care homes and how is it practiced have not been fully addressed.  In addition, whilst there is growing literature on the subject of citizenship regarding people living with a dementia, it remains under-theorised and lacks a material lens.  In this study, I draw upon my doctoral work in care homes to argue that of locating citizenship is the introduction of ‘material citizenship’.  I define material citizenship as ‘the right to be included in decision making relating to belongings and opportunities to use ‘functional objects’.  The concept combines psychological and sociological concepts of everyday routines and rituals, and maintains and reconstructs a person’s identities through the subjective and material worlds in which we live and perform through the use of ‘functional objects’.  Material citizenship is highly relevant to people living with a dementia in care homes, where institutional policies and procedures are designed to meet care needs rather than promote rights and citizenship. 

This ethnographic study took place in a care home in the United Kingdom. The study consisted of 144 hours of participant-observations, 22 interviews and documentary research including people with a dementia, family members and care home staff.  Field notes and transcripts were coded. Emerging themes were analysed taking a critical realism approach using abduction and retroduction analysis.  

This study provides an in-depth insight into how decisions are made relating to the belongings people with a dementia are ‘allowed’ to take into care homes and the objects they are ‘allowed’ to use.  It argues that people with a dementia are often excluded from decision making and that citizenship rights are denied.  It also introduces material citizenship as a concept which in practice can identify the absence of citizenship and in doing so can argue for its reinstatement, advancing dementia care.

P23.3. Promoting brain health in intellectually disabled persons, memory workshop - operating model

SORVISTO Anu1, RISKUMAKI Kristiina1, SORVISTO Anu2, RISKUMAKI Kristiina2

1Etela-Pohjanmaan Muistiyhdistys ry, Seinajoki, Finland, 2TOM-project, Seinajoki, Finland

Information about memory disorders among intellectually disabled is hard to find and the subject is still underdiagnosed and not studied enough.

Dementia among intellectually disabled is still underdiagnosed and not studied enough and information about it is very hard to find. Intellectually disabled have a right to know about memory disorders and how they can themselves improve their brain health. We can’t just sit and wait for intellectually disabled to come to us for information. We have to make the first move and bring memory knowledge to them.

The TOM-project (information to relatives and intellectually disabled people about memory illnesses) has created a memory workshop-operating model and organizes Memory workshops in activity centers for intellectually disabled around South Ostrobothnia, Finland. How memory functions, what is the meaning of brain health and healthy life style, how to recognize symptoms of dementia, information about nutrition, exercise and sleep are addressed topics in workshops.

The TOM-project’s monthly 1,5 hour workshops are organized in activity centers for intellectually disabled. Groups vary from 9 to 20 people and activity centers workers act as co-instructors. So far we have reached hundreds of intellectually disabled in 27 different activity centers.

Pragmatic tools used in memory workshops include pictures, colors, sounds and music, handcrafts and low-key exercise. Reading and writing can cause difficulties. Getting to know each individual group and to try-and-test are the best ways to find out what works with each of the groups.

TOM model has started to spread out into several regions of Finland.  Together with small steps and deeds we build memory friendly and equal Finland also for intellectually disabled and their next of kin.

P23.4. People with dementia have rights too - Adopting a rights based approach

FRANCIS Vivienne, SMITH Kathryn, TERRY Gavin, HUTCHINGS Rachel, COX Sam

Alzheimer's Society, London, United Kingdom

Alzheimer’s Society is currently developing a rights-based approach to dementia, to provide a framework to highlight the inequality faced by people affected by dementia, and fight for a society where they are supported, accepted and able to live without fear or prejudice. The current political environment - including the UK leaving the EU - is a significant opportunity for highlighting the necessity of guaranteeing the rights of people affected by dementia going forward.
 The new ‘Dementia Statements’, developed in consultation with people affected by dementia are at the heart of this work, and provide a rallying call for us to lead a dementia movement. Like the international disability rights movement, which has been instrumental in securing change for people with disabilities, we must demand change and stand up for the rights of people affected by dementia. In 2010, the organisations that formed the Dementia Action Alliance asked people affected by dementia what type of care and support they would hope to receive in the future. They created the National Dementia Declaration, a set of seven expectations or Statements of what life should be like for people with dementia. These ‘I’ Statements were used to inform the Prime Minister’s Challenge on Dementia (Department of Health, 2012).Between 2016 and 2017, Alzheimer’s Society led a review of the Statements on behalf of the DAA alongside people living with dementia, including carers to ensure they reflected what people want today.
 The person with dementia is at the centre of these refreshed Statements. They represent everyone living with any type of dementia regardless of age, stage or severity, using ‘we’ rather than ‘I’ to encompass people with dementia, their carers, families, and anyone affected.These rights are enshrined in the Equality Act, Mental Capacity legislation, Health and care legislation and International Human Rights Law.

P23.5. Framing dementia as a disability and a human rights issue: What are the advantages?

CAHILL Suzanne

Trinity College, Dublin, Ireland

Traditionally dementia has been understood as a syndrome caused by diseases, characterized by plaques and tangles, suffering, passivity, drugs, restraints and at the extreme locked doors and clinical technical care and there is a gap in our understanding of dementia from a social justice and human rights based perspective. This paper takes a rights-based approach and using important concepts enshrined in the UN Convention on Persons with Disabilities (CRPD, 2006) such as participation, autonomy, equality and solidarity, it interrogates dementia policy and practice. It is argued that although dementia may strip people of their memory and cognitive functioning, it does not take away their dignity and personhood. It is society and those of us deemed healthy and cognitively in tact that can do this by erecting disabling barriers that make life all the more difficult for the individual and for their family members. Through nihilistic attitudes, poorly designed environments and deficit-based policies, often resulting in task-centered and oppressive care, we can unintentionally contribute to a cognitively impaired person’s ‘excess disability’. However, by eliminating some of these unnecessary barriers, we can support the individual living with dementia to function better for longer.  It is argued that a rights-based approach means empowering the individual to self-advocate and pose pertinent questions about fundamental freedoms.  Dementia is a significant and growing disability and human problem that needs to be understood as a problem of humanity and one that requires a positive collective and equality-based societal response.

P23.6. Dementia-friendly polling stations

MEERVELD Julie

Alzheimer Nederland, Amersfoort, Netherlands

People with dementia want to participate in public life, without restrictions. Some of them also still want to vote at national and local elections. They only need a little bit more time and help. In 2018 Alzheimer Nederland started a campaign at the local elections. We have three aims:

Awareness: Raise awareness of the fact that people with dementia are allowed and can be capable of voting, but need some extra time and help. So voting for people with dementia will be easier and lower the threshold to vote. Henk with Alzheimer introduced Voting in ten steps, a simple tool for people with dementia. We also introduced a video on youtube about voting when you have dementia.

Dementia-friendly polling stations: Getting the polling station dementia-friendly! This has been achieved to inform all the employees of the polling stations about the online training they can join for free. This training focuses on recognizing someone with dementia and the approach to them. The goal was to make the voting experience of people with dementia more pleasant.

No restrictions in law: According to the Convention on the Rights of persons with disabilities (UN 2006) persons with disabilities must be guaranteed to participate in political and public life, so people with dementia must also have the right and ability to vote at elections. Dutch law says that people with aphysicaldisability can receive help in the polling booth. However, people with dementia are not allowed to receive this help in the booth. Alzheimer Nederland is aiming to legalize help for people with dementia in the polling booth. After this campaign, the minister of  Internal Affairs of the Netherlands (Mrs Ollongren) is aware of this problem for people with mental disabilities and is willing to look for a solution.

 

 
 

Last Updated: Tuesday 13 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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