This year the annual Dementia Action Alliance conference was attended by well over 100 members, individuals affected by dementia, and experts in their field across the health and social care sectors. The day was co-chaired by Professor Dawn Brooker of University of Worcester Association for Dementia Studies and Tracey Shorthouse a former District Nurse and Living with Dementia.
Chadwell Heath resident Janis Cottee who volunteers in the office of Jon Cruddas MP also featured in the conference at a panel discussion around the revised Dementia Statements, which Janis among others helped to inform. The Dementia Statements are a series of statements which represent an authentic voice of people living with Dementia, outlining rights which are enshrined in the Equality Act, Mental Capacity legislation, Health and care legislation and International Human Rights law.
- 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.
- 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.
- 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.
- 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.
- 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.
The revised Dementia Statements are rights based and focus on a ‘We’ approach, to include carers and families. Over 6,000 DAA members across a broad spectrum of sectors are committed to the Statements and aim to embed them in their organisation’s work.
Janis Cottee commented “the Dementia Statements would have given me (as a carer) the right to say ‘he has the right…’ rather than me just screaming for help. It is vitally important that these Statements are recognised as they will give carers, and those living with Dementia the confidence to have a voice.”