Friday, July 30, 2010

Caregiving and Youth

By R. Scott Benson, M.D.

I met a remarkable young woman last week. Sarah (not her real name) was only 15 years old so she couldn’t get a summer job, so she offered to help with her grandmother who had recently returned home from a brief hospital stay. Sarah was pretty excited about the opportunity since she always felt that she was her grandmother’s favorite.

After a few weeks Sarah had what she described as a pretty typical panic attack. Her parents weren’t particularly surprised since Sarah had had some problems with anxiety when she started middle school. Those problems resolved with brief therapy. They quickly arranged for a reevaluation aware that she was at risk for a recurrence of her anxiety problems.

Before she came for the visit she had experienced a couple more panics and was having trouble settling for sleep at night. She couldn’t identify any new stressors. She was positive about her family and peer relationships. She told me her time with her grandmother was going well and she enjoyed the responsibility. She did tell me that her grandmother needed someone with her and the family didn’t have any other easy options.

We reviewed the tools she learned in the sixth grade for control of her anxiety symptoms. Her schedule was a little cramped and she had dropped her regular exercise (she is a runner). We got that going again, talked about her sleep and agreed on a follow-up appointment.

That week Sarah continued having panic attacks and some crying spells. I asked her to tell me a little more about the time she spent with her grandmother. At first she was hesitant since she didn’t want to complain – “Sometimes it’s hard, but it’s okay.” I pressed for more, and she began to cry. It was turning out to be harder than she thought it would be. Her grandmother had gotten mean and complaintful. Nothing Sarah did was right.

She could tell her grandmother was getting forgetful, but she wasn’t prepared for the repeated accusations that it was Sarah who was misplacing, even hiding things from her. Sarah, ever dutiful, would retrace her steps, offer reassurances to her grandmother, only to hear the same accusing questions a few minutes later. The worst for Sarah was her grandmother’s angry name calling, accusing Sarah of stealing, questioning her behavior with her boyfriend, claiming sexual behaviors that never happened.

Sarah had kept all this to herself even questioning if some of these hurtful accusations could be true, thinking her parents would disbelieve that her grandmother would say such things, worried what would happen to her grandmother if Sarah didn’t “tough it out” and help the family keep her grandmother in the family home.

Sarah was relieved to get these problems out in the open. She agreed that we should share these problems with her mother. Her mother was concerned that Sarah was having such a struggle with the grandmother; she knew there were some memory problems but had not seen these behaviors. Both were relieved to hear that these were not unusual behaviors in elderly persons with early dementia.

Sarah’s mother agreed to talk with their family physician about an evaluation for her mother. I talked with Sarah and her mother a little about strategies they could use to help Sarah with some of the stress of this caretaking responsibility. I suggested they look at the information available through the Alzheimer’s Association and the AARP site on caregiving.

Families will be challenged by increased demands for caregiving as the baby boom generation ages. A lot of this caretaking will fall on mature children and adolescents. Currently, there are estimated to be 1 to 1.3 million teens who have caretaking responsibilities. A lot is written about the demands on adults put in a caregiving role realizing that they are subject to depression, anxiety, and burnout. Teens in caregiving roles face the same risks and we need to be prepared to provide the support they need. Some communities have recognized this problem and started programs to provide these young people with the support they need. One program, the American Association of Caregiving Youth in Boca Raton, FL, is bringing national attention.

There is also information about Alzheimer's and the mental health of seniors at

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