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Talking about dementia as a progressive illness and end of life

Dementia refers to problems with memory, thinking and communication that are caused by damage to the brain.

The most common type of dementia in the UK is Alzheimer’s disease, but there are many different types of dementia. You can find out more about dementia in our sister course: Dementia care: Staying connected and living well.

Dementia is a chronic and progressive illness. This means that dementia is permanent and that the symptoms get worse over time. In the later stages of dementia, people may have difficulties with eating, drinking, moving around, communication and recognising loved ones. It can become increasingly difficult for the person with dementia to express their needs and wishes.

Whilst the symptoms of advanced dementia are complex and can pose difficulties with daily activities such as eating and drinking, this does not always mean that end of life is near. It is difficult to know when someone living with dementia is coming to the end of their life, but the medical professionals involved in the care of the individual will be able to tell you what they think as things progress. As Consultant Christopher Massey highlighted in Step 1.7 it can also be helpful to look back at changes over the last year.

Thinking and talking about end of life and the progression of dementia can be frightening, but talking about this can help you to prepare for what the future might hold. We can perhaps make it easier, or less stressful, to talk about this by seeking support and taking some simple steps. There are a range of organisations and professionals who can help start this conversation and give you advice and support about what to think and talk about. In the UK your key contact for support is your GP (General Practitioner). Even if your GP hasn’t broached the subject, you can start this conversation with them. Alternatively you might first want to talk to someone who is familiar with dementia or caring.

Regardless of the type of dementia which your relative has, you can speak to charities and organisations such as Alzheimer’s Society or Dementia UK. Alzheimer’s Society have resources available online, and have a National Dementia Helpline (in England, Wales and Northern Ireland) where you can speak to an adviser over the phone. If the person you support has received a diagnosis of dementia in the UK then they (and you) have probably been in contact with a specialist dementia service or memory clinic. Other countries are likely to have their own organisations who can help. A healthcare professional should be able to point you in the right direction. Professionals will be able to explain more about the progression of dementia and will be able to provide advice and support about what to talk about and what the future may hold.

Talking about how things might change in the future, and how someone wants to be treated and cared for towards and at the end of their life can help prepare for changes and to ensure that the wishes of the person are respected. Talking together about end of life and the progression of dementia as early as possible may seem challenging, but it can provide opportunities for the person with dementia to make important decisions about their future and may be beneficial to help you both prepare and plan ahead.

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This article is from the free online course:

Dementia Care: Living Well as Dementia Progresses

Newcastle University