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Lou Gehrig's disease hard on caregivers

NEW YORK (Reuters Health) — Spouses and other family members who care for someone with Lou Gehrig’s disease may suffer worsening depression and quality of life over time, according to a study published Monday.The disease, formally known as amyotrophic lateral sclerosis (ALS), is a fatal neurological condition in which the nerve cells that control movement progressively degenerate, leading to paralysis and respiratory failure.

On average, ALS patients live for two to four years after diagnosis. To see how people caring for someone with ALS are affected over the course of the disease, Italian researchers followed 31 ALS patients and their caregivers — most often a spouse — for nine months. At the beginning and end of the study, patients and caregivers completed standard questionnaires on depression symptoms and quality of life.

In general, caregivers’ depression scores worsened over time, as did their perceived quality of life, the study authors report in the journal Neurology.

While most of the caregivers did not suffer from clinical depression during the study period, the number who did doubled — from three at the outset, to six when the study ended nine months later.

The same was not true, however, of ALS patients, who remained steady in their levels of depression and even showed a slight increase in their quality of life scores. By the end of the study, patients’ quality of life ratings were actually higher than their caregivers’, the researchers found.

“When health professionals take care of ALS patients, they have also to pay attention to their caregivers’ needs and problems,” senior study author Dr. Adriano Chio of the University of Torino told Reuters Health.

“ALS is a disease that involves all family members,” he said.

This means that doctors and other doctors and therapists should give caregivers guidance in “activating all resources possible,” Chio said — including help from the health system and from community support groups.