When someone in our family was recently diagnosed with dementia, I found out that many people did not know that this would get progressively worse and eventually become terminal. Dementia causes great sadness in families and the kind of support you need changes as the disease progresses.

Hospices are caring for more and more dementia patients at the end of their lives. Some are in their own homes and others in facilities. As people can live a long time with dementia, how do you know when to call hospice?

In the late stage of dementia, people can no longer stand, walk, speak or swallow. Hospice can help in the last 6 months, sometimes longer when there is continuous decline. This is often when someone is having frequent infections; is very weak and dependent for all care; has weight loss and poor nutrition and is having trouble swallowing or choking easily.

Feeding tubes are NOT recommended for dementia patients. They can cause infections or ulcers and they do not prolong life. They may actually cause more suffering.

It is important to ask your doctor or get a hospice assessment if you are not sure. Sometimes people have other illnesses along with dementia and may be eligible for hospice care before they have the signs mentioned here. Palliative care doctors can help when you are uncertain about treatment for other illnesses or whether it is time for hospice. There are some community palliative care programs that can offer support at home earlier, especially when someone can no longer get to their doctor’s office or clinic.