Difficult behaviors tax caregivers

Study: Most caregivers of dementia patients feel stress

By Mac McLean / The Bulletin / @agingbeat

Published Aug 29, 2014 at 12:08AM

Steve Thorp knew something was wrong about three years ago when his wife, Margot Alexander, started having problems remembering things like where she put something or the date of an event.

These memory issues steadily got worse, and she was diagnosed with Alzheimer’s disease in the summer of 2013.

“It has been a very stressful experience,” Thorp said as he talked about what it was like caring for someone with dementia.

Thorp said one of the biggest challenges he encountered was watching his wife slowly lose her memory and the sense of the person she was. This only added emotional stress to his already mentally and physically taxing caregiving duties.

According to a report from AARP’s Public Policy Institute, 61 percent of the people who care for a family member who has a cognitive or a behavioral health condition — memory issues, dementia, depression, anxiety, etc. — reported feeling stressed because they were having problems managing their caregiving duties and other responsibilities.

The study found more than a third of them reported feeling that they had no time to themselves because of their caregiving duties, that they were depressed by their caregiving duties, that they were constantly waiting for something to go wrong with the person they were looking after and that they were in fair or poor health because of the stress.

People who care for someone who does not have a cognitive or behavioral health condition also experienced these stresses, but at much lower numbers.

“Family caregiving is stressful,” wrote Susan Reinhard, director of the AARP Public Policy Institute. “Providing care and support to people who have cognitive or behavioral health conditions is doubly challenging.”

Reinhard and her co-authors, Sarah Samis and Carol Levine with the United Hospital Fund, found some of the biggest factors behind the high stress caregivers face is the fact they are more likely to manage their loved one’s medications, use special equipment to monitor their loved one’s condition and deal with their loved one’s incontinence than other caregivers.

She wrote caregivers in general are often given “little or no guidance on how to do this important work” before they start providing these services to their loved ones. But the situation is even worse for people who care for someone with a challenging behavior because the person they are caring for may often resist the caregiver’s attempts to help. This could be one reason why caregivers of people who have a challenging condition are more likely than other caregivers to hire a home care aide to help them with their duties — 28 percent versus 19 percent — especially because they also often receive little help from other family members.

“Much more has to be done for family caregivers in these particularly difficult situations,” Reinhard wrote in her report.

She then made a series of policy recommendations that could help these caregivers, including:

• Making sure behavioral health and medical care trainings are offered together so a person only has to make one stop when they’re trying to learn what they need to know to perform their caregiving duties;

• Increasing the amount of respite or adult day care services, particularly ones that specialize in looking after people who have a behavioral health or cognitive condition, that are available in a community so caregivers can get a break, and;

• Teaching health care providers how to recognize the signs of cognitive or behavioral health conditions and how to work with someone who is providing care to that person so the caregivers’ experience in a hospital or health care facility will be much less stressful.

Reinhard said it’s important caregivers receive this extra support because if they are able to keep their loved ones at home, they are keeping them out of a nursing home, where the public might end up bearing the cost of providing their care.

But for Thorp, that is all a little bit too late. He was forced to put his wife in a long-term care facility after she fell and broke her hip after wandering away from their Eagle Crest home this past Mother’s Day weekend.

“That’s the best possible situation for her right now,” said Thorp, who is now looking to sell his house so he can be closer to his wife and her long-term care facility.

— Reporter: 541-617-7816, mmclean@bendbulletin.com