Advanced Care Planning at the End of Life for People with Dementia

Jones, Kerry and Richards, Naomi (2017). Advanced Care Planning at the End of Life for People with Dementia. In: Dementia and End of Life Care in Scotland, 13 Jun 2017, The Open University, Dumfries, Scotland.


In the UK is estimated at around 800,000 people, with 90, 000 people with dementia in Scotland. It’s forecast that by 2025, one in three people over the age of 60 will have dementia when they die.

It is not always recognised that dementia is a progressive and life-limiting illness – perhaps because you can die of other things for example cardiovascular disease. However, as a result dementia hasn’t received the same level of attention or professional support as other life-limiting illnesses e.g. cancer. In response, a lot of policies – like the Scottish palliative care strategy want to get us talking about death and dying – but we need to get dementia included in those conversations.

Dementia involves complex physical and psychological needs. Symptoms, rate of progression, and longevity are all specific to the individual, and can be unpredictable. People in the more advanced stages typically lose mobility, speech, and the ability to chew and swallow safely. One of the things which can characterise the end of life for people with dementia is that things can end up happening to them which they would not have wanted. We can call this treatment undignified – not the kind of ending they would have wanted involving unnecessary interventions. This is what people are seeking to avoid.

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