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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 are seen as a means of providing comfort to an individual who might be in pain from a urinary tract infection or similar condition. The choice can lead to severe distress for the family.

“The decision about antibiotics is torturing me,” one person told Klein.

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

Klein’s 317-page dissertation traced the journey of family caregivers, examining their how their knowledge of advance care planning evolved from the time before a loved one was diagnosed with dementia through the end stages of the disease. She created a theory of advance care planning based on how caregivers do ACP, use ACP and the factors that influence the process.

Among other findings pertinent to long-term care professionals: Klein found that social workers, including those in nursing homes, are well positioned to guide the advance care planning process in the early stages and then to help with the difficult decision making in the late stages.