Zach Moss
10 December 2013
Making Dementia Care Personal
I joined the charity Compassion in Dying after having lost both my parents. Some years prior to this, a close family member of mine suffered a heart attack when they were in their mid twenties and was left unconscious for a period of time. Making wishes and preferences clear about how you would like to be treated should you lose the ability to communicate is something I now feel very passionate about. But this is a subject that not everyone feels comfortable talking about. I have to say, prior to my own experiences it wasn’t something I ever thought about or felt the need to discuss. People often don’t, until it’s too late.
There are massive misunderstandings and a general lack of awareness of what individuals rights are at the end of life within the UK. A poll we undertook, published in the Guardian newspaper earlier this year, found that the majority of people have strong feelings about how they would like to be treated at the end of life, but only 4% of people have made these wishes clear in an Advance Decision. Almost half of people surveyed wrongly believed that they had the right to make medical decisions on their loved ones behalf if they lose the ability to communicate. This is not the case.
If someone doesn’t have an Advance Decision or hasn’t appointed a Health and Personal Welfare Lasting Power of Attorney, the decision around medical treatment will always be made by the healthcare team. They should obviously take into account the views of the loved ones, but this doesn’t always happen. Making your wishes clear in advance has so many advantages. It gives people control at a time where they have lost control over most other aspects of their life. It makes things easier not only for the individual but also for their loved ones and healthcare team at a time of life that can be incredibly difficult. It avoids unnecessary complexity and the possibility of being referred to the Court of Protection – a costly, time consuming and expensive process. It also brings peace of mind, enabling individuals to make informed decisions in advance and in the words of one of the older people we work with lets people ‘get on with living’.
March will mark the end of the project I have had the privilege to be working on for the past year. The End of Life Rights Advocacy Project runs in partnership with Age UK East London and aims to increase awareness of End of Life Rights amongst older people in East London. We do this by training up volunteer befrienders and advocates to support older people to be aware of their rights and choices, and to complete Advance Decisions and Health and Personal Welfare Lasting Power of Attorney. Part of my work is also engaging with the general public providing training and information sessions – it was during one of these sessions I met Darren.
The lack of public understanding of dementia and the ‘taboo’ about discussing death and dying combine to create a double stigma around dementia and death. It has been a massive learning curve for us as an organisation as we have been working amongst one of the most ethnically diverse areas in Western Europe, with an accompanying diversity of views on end of life care. Much of this work has been done in care homes of people living with dementia. There is sometimes a reluctance to have conversations around end of life care amongst staff; however speaking openly about the future can improve the quality of life as the dementia progresses.
It is vital that conversations are started early to avoid missing opportunities and we recommend that conversations are started at the time of diagnosis. It doesn’t have to happen all at once, people need time to think, but it is important that individuals are given the opportunity to discuss while at the same time not imposing the conversation. Receiving the diagnosis of dementia can be overwhelming and so things can always be revisited at a time that is comfortable for the individual.
It is an exciting time for the charity as our project has been shortlisted by the National Lottery to be rolled out across England. If we are successful (we should hear in February!) this will be a fantastic opportunity to ensure that our work and learning can support thousands more older people plan for and have their wishes respected at the end of life. If you would like more information about your end of life rights you can phone our free information line on 0800 999 2434. You can also download one of our free Advance Decisions.