Taking care of a relative with Alzheimer’s is so grueling physically and emotionally that nearly three-quarters of those who do it are relieved when their loved one finally dies, a study found. The study also found that a year after the deaths, the caretakers were considerably less depressed than people who had put their Alzheimer’s-stricken loved ones in a nursing home or other institution.
“You don't get this closure when you put someone in a long-term care facility. You don’t get the release that people who have experienced the death of a loved one do,” said researcher Richard Schultz of the University of Pittsburgh School of Medicine.
His study, published in Thursday’s New England Journal of Medicine, looked at 217 people who cared for a spouse, parent or other relative at home until their deaths and 180 who began care at home but eventually put the Alzheimer’s patient in an institution.
Seventy-two percent of the caregivers said it was “somewhat” or “very much” a relief when their loved ones died, and more than 90 percent believed it was a relief for the patient.
In an accompanying article, Holly G. Prigerson of Yale University’s psychiatry department noted that the caregiving period for Alzheimer’s patients is exceptionally long and demanding.
Moreover, the relatives “endure the anguish of caring for a loved one who, in many respects, is already gone.” To make matters worse, the patients may seem unappreciative of the enormous sacrifices made for them, she wrote.
Schultz said it is important for people to know that feelings of relief after a loved one’s death are normal and no reason to feel guilty.
The 53 caregivers who could be reached a year after the patient’s death averaged an 11.5 on a 60-point scale in which a 16 indicates depression — down from an average of 15.8 in the months leading up to the death.
In contrast, people who had put their loved ones in an institution had an average score of 16.2 a year later.
People taking care of a dying patient may grieve for him or her before the death, Schultz explained.
Past studies have found lower rates of depression among people taking care of relatives with cancer and other terminal diseases, Prigerson said.
The caregivers were among 1,222 in a study of a half-dozen programs to counsel or otherwise help Alzheimer’s caregivers in Boston; Birmingham, Ala.; Memphis, Tenn.; Miami; Philadelphia; and Palo Alto, Calif.