Konnektis were at the Dementia Action Alliance Conference on Wednesday 6th December, where discussions centred around the new dementia statements.
The dementia statements were developed by people living with dementia and their carers to support the implementation of the Prime Minister’s ‘Challenge on Dementia 2020’ across the NHS, social care, the research sector and wider society.
The statements are grounded in human rights laws and are a call to improve the lives of people living with dementia by stating that they should not be treated differently.
The person with dementia is at the heart of these statements. However, the replacement of ‘I’ with ‘we’ recognises that dementia also affects families and carers, and the statements aim to shift power to people living with dementia and their support network.
The 5 Dementia Statements are outlined below:
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.
Below we have highlighted some of the key points that we drew from the statements and from the table discussions about what people can practically do day-to-day.
Compassion is key
In particular, the word ‘compassionate’ stands out in the third dementia statement. Discussions highlighted how compassion can be lost when people living with dementia are labelled as patients rather than individuals that have a right to lead as rich and varied a life as possible.
There needs to be greater understanding about how dementia affects people, and all the parties involved in the health and wellbeing of someone living with dementia - from health care professionals to care home staff - should practice compassion towards both the person and their family. Crucially, we must understand the difference between empathy and sympathy, namely feeling with someone, not for them.
How do we achieve this?
We can be compassionate by making time to take a genuine interest in a person’s life and by ensuring that their views are respected.
The importance of shared decision making
The voice of people living with dementia is a priority, but we should also recognise that the their family and carers deserve to be involved and supported as much as possible.
This is something that we at Konnektis feel strongly about, and is why we want both the person receiving care and their family to be involved in care. We understand that families typically want to act as a unit to support their loves one.
How do we achieve this?
Both people and their families should be able to be involved in decisions across the range of settings where discussions take place - be they hospital appointments or choices about social care and broader community support - without excluding either party.
We must lead by example
It is important to engage with people as individuals, and this is at the heart of the dementia statements and the human rights laws that underpin them. People with dementia have as much right to lead a full and fulfilling life as anyone else in our society.
While there are a number of initiatives that enable this, such as reminiscence apps or person-centred care plans focusing on the person’s likes and dislikes, we must make sure that this is embedded at all levels of health and social care. Discussions at the DAA event suggested that training alone cannot achieve this. Rather, we must lead by example, as this is by far the most effective way of getting entire organisations thinking and acting in a certain way.
How do we achieve this?
The dementia statements are short and digestible and care managers or other people in leadership positions should be able to always keep them in mind, and act in accordance with them. Try keeping them in your wallet or on your desk.