BLOG: Death, dying and dementia

27th May 2021

By Tom Rose, Admiral Nurse Clinical Lead at St Barnabas Hospice

I want to talk about something we typically aren’t very good at, three things in fact.

Firstly, dementia affects 1 in 14 people over the age of 65. However, it is not an issue of old age. About 42,000 people in the UK have dementia and are under the age of 65. Once someone has a diagnosis of dementia, they will have it for the rest of their lives. This means that dementia is a lifelong and life-limiting condition. In fact, dementia is now the leading cause of death in the UK, accounting for about 12% of all deaths. It is the only top 10 cause of death with no treatment to prevent, cure or slow down the condition’s progress. Yet, only half of the public recognise that dementia can cause death.

We need to get better at talking about dementia as a life-limiting condition. This is not the same as admitting defeat or saying that life is over. It’s acknowledging that there are things that are going to become harder to manage and that support will be needed in the future. It also means that at some point, we should talk about what’s important to the person with dementia and what they want to happen and where they want to be cared for towards the end of their life. For many of us, these are not conversations we are used to having, and they can be frightening, unwelcome and anxiety-provoking.

As a team of Admiral Nurses working in a hospice, my job is to support a person with dementia and their families who face an uncertain future with less fear and more confidence. This means having conversations that people may be worried about having. However, they can often be very funny, they can bring a lot of relief, and they can help people to make sure that others know what their wishes are. Each of us is different, but we all have things that are important to us, things we would like to ensure are in place. Don’t leave it too late to let others know this.

As a hospice, we strive to ensure that everyone in Lincolnshire is given the opportunity to access the right care at the right time in the right place for them. This is just the same for a person with dementia.

Where can I find out more information?

Several organisations provide information and support nationally.

Dementia UK – www.dementiauk.org – support Admiral Nurses throughout the country who provide specialist support for families living with dementia. They also have a national helpline on 0800 8886678

Alzheimer’s Society – www.alzheimers.org.uk – also have information resources about dementia.

Alzheimer’s Research UK – www.alzheimersresearchuk.org – have information, statistics and resources about the current state of research into treatment and prevention of dementia

Here at St Barnabas, we offer support for families living with dementia in Lincolnshire when things are particularly complex or difficult to manage. We can be contacted on 01522 551250 or admiralnurses@stbarnabashospice.co.uk. If you feel that a referral to the service would help, speak to your GP or other supporting health and social care teams who can refer you directly to us.

You can sign petitions to call on the government to increase funding for dementia research. Current dementia is the only top 10 cause of death with no treatment. Yet, it receives a quarter of the budget that cancer research does. Alzheimer’s Research UK is calling on the government to honour commitments previously made to this (Sign our petition for dementia research | Alzheimer’s Research UK (alzheimersresearchuk.org)).

The Alzheimer’s Society is also calling on the government to improve the funding of care for families living with dementia as a majority of users of care services are likely to have dementia Sign our petition to #CureTheCareSystem | Alzheimers Society

Lastly, you can also become a research participant in increasing our knowledge about dementia. By signing up, you can participate in studies to better understand risks associated with dementia and help find cures and treatments. This can be done by anyone whether you are impacted by dementia currently or not Join dementia research – register your interest in dementia research : Home (nihr.ac.uk)

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