End-of-life care, or palliative care, aims to support a person in the later stages of a life-limiting condition to live as well as possible until they pass on. It also aims to support family and caregivers during this time and after the person passes on. End-of-life care may last for weeks, months, or occasionally years. It is often difficult to know exactly when a person living with dementia is approaching the end of their life.

A person-centred care approach is an important aspect of palliative care as it is with dementia care in general. A person-centred approach, according to Professor Tom Kitwood, a major contributor in the field of dementia care: values a person who lives with dementia; treats the person as an individual; looks at the world through the person’s perspective; and addresses the effects of the social environment on the person living with dementia.¹ These things are just as important for a person living with dementia as they live their final days.

There are symptoms in the later stages of dementia that can suggest the person is reaching the final stage of their illness, but this may be difficult to predict.

These include:

• Speech limited to single words or phrases that may not make sense
• Needing help with most everyday activities
• Eating less and having difficulties swallowing
• Bowel and bladder incontinence
• Being unable to walk or stand, problems sitting up and controlling the head, and becoming bed-bound.

For many people, a ‘good death’ means:

• Being treated with compassion and respect
• Being kept clean, comfortable and free from distressing symptoms
• Being in a familiar place surrounded by those close to them End of Life Care seeks to support all aspects of your loved one’s wellbeing, especially:

• Physical needs (including pain relief and management of other symptoms)
• Emotional health
• Social health – their relationships with others
• Spiritual beliefs

End-of-life care for a person living with dementia can involve a number of different professionals working together, including the doctor, nurses, social workers or care home staff. Palliative care professionals at a local hospice or hospital may give specialist input if this is needed. This team of professionals should keep you updated as the person’s condition changes and involve you in any decisions. The person should always have an up-to-date care plan that includes end of life plans and is shared with those involved in the person’s care. It is likely that a person living with dementia is nearing the end of their life if they have these symptoms, along with other problems such as frailty, infections that keep coming back, and pressure ulcers.