Dementia Statements

Dementia Statements reflect the things that people with dementia and carers say are essential to their quality of life. These statements were developed by people with dementia and their carers, and the person with dementia is at the centre of these statements. The “we” used in these statements encompasses people with any type of dementia regardless of age, stage or severity; their carers; families; and everyone else affected by dementia.

These rights are enshrined in the Equality Act, Mental Capacity legislation, Health and care legislation and International Human Rights law and are a rallying call to improve the lives of people with dementia. These Statements recognise that people with dementia shouldn’t be treated differently because of their diagnosis.

To read a full NDAA Dementia Statements overview of click below.

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The full statements are shown below:

Research

We have the right to know about and decide if we want to be involved in research that looks at cause, cure and care for dementia and be supported to take part.

Independence | Interdependence| Dependence

We have the right to be recognised as who we are, to make choices about our lives including taking risks, and to contribute to society. Our diagnosis should not define us, nor should we be ashamed of it.

Community | Isolation

We have the right to continue with day to day and family life, without discrimination or unfair cost, to be accepted and included in our communities and not live in isolation or loneliness.

Carers

We have the right to an early and accurate diagnosis, and to receive evidence based, appropriate, compassionate and properly funded care and treatment, from trained people who understand us and how dementia affects us. This must meet our needs, wherever we live.

Care

We have the right to be respected, and recognised as partners in care, provided with education, support, services, and training which enables us to plan and make decisions about the future.

The process

Over 80 people with dementia and carers contributed to the review overall, through 15 different groups. Five key themes were identified through this research – identity, care, community, carers and research.

After summarising the evidence from that overall review, a Drafting Event was held and that was attended by nine people with dementia – three of whom were accompanied by their carers – and three former carers. Members of the group produced draft statements based on the five themes. A significant change was to move from ‘I’ to ‘We’ at the start of each statement signifying that this included people with dementia and carers equally.

A Consensus Event was then held, where the final set of statements – the ‘Dementia Statements’ were agreed. This was attended by people with dementia and carers as well as representatives of NDAA organisations.

In April 2017, the Statements were welcomed and endorsed by the Dementia Programme Board that monitors and supports the implementation of the Dementia 2020 Challenge across the NHS, social care, the research sector and wider society.

The new Dementia Statements reflect the things people with dementia and carers say are essential to their quality of life. Grounded in human rights law, they are a rallying call to improve the lives of people with dementia and to recognise that they shouldn’t be treated differently because of their diagnosis.

By championing the rights of people living with dementia and their carers we will transform the landscape of dementia forever.

© National Dementia Action Alliance 2019. All rights reserved

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