End-of-life care and dementia

Pain in advanced dementia is a common symptom. People with dementia experience pain just as much as anyone else. Pain in people with dementia is often poorly recognised and undertreated, and yet it is not difficult to treat. Caregivers need to work hard to understand a person's verbal and non-verbal signs that they are in pain. Uncontrolled pain can seriously affect a person's quality of life.

People with advanced dementia often experience problems with swallowing. Swallowing problems can be well managed. Towards the end of life, a person with dementia may take in very little food and fluids, which may make family carers worry that the person is starving to death, when in fact they are not. Most health professionals now believe that tube feeding at the end of life is not good practice and prefer food and fluids to be given by mouth.

Family carers often talk about ‘losing the person they knew’ with dementia before they die. Carers often feel guilty if their relative who has dementia enters a care home. End of life care decisions are not easy for carers. There is a lot you can do to support carers at the end of life of the person with dementia.

Dying is a natural part of life, and it is important to plan well for the last few days and hours of life. People with dementia should be able to die in comfort, and we can do a lot to help manage symptoms. The support we offer at this time must be in keeping with a person’s wishes, their spiritual views, culture and life history. Family and friends will need emotional support too, and timely and accurate information.