Better dementia-related info is needed for families: report

Share this content:
Family members struggle with caregiving decisions for loved ones with dementia.
Family members struggle with caregiving decisions for loved ones with dementia.

Even with advance directives in place, family members making decisions for end-stage dementia patients struggle with the trajectory of the condition, suggests a small study out of Virginia Commonwealth University.

While advance directives commonly cover such interventions as feeding tubes and resuscitation, “gray area” issues such as providing antibiotics to someone in the late stages of dementia are very difficult for loved ones, researcher Mariette Klein discovered. For her doctoral work, Klein interviewed 22 people making care decisions for a loved one with dementia. Twenty had a written advance directive in place.

Antibiotics for conditions such as pneumonia sometimes are seen as prolonging life at a time when a peaceful death would be preferred, Klein found. However, they also can provide comfort for someone in pain from a urinary tract infection or similar conditions. The choice can lead to severe distress for the family.

Nursing home and assisted living professionals might ease this distress by providing clearer information about the late stages of dementia, Klein's findings suggest. Many respondents said that healthcare professionals do not clearly explain “markers for the end,” such as non-healing pressure ulcers or total incontinence, and that hospice care seems to start too late.