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Taking care of a loved one with Alzheimer’s disease is an endless — and thankless — task. The patients worsen gradually from some memory loss and difficulty concentrating to losing their ability to get around, to communicate clearly and to take care of themselves. It’s a one-way journey with no hope for improvement.
The constant care takes a terrible toll on caregivers, many of them children or spouses of the patient. It’s common sense to suggest that people taking care of Alzheimer’s patients should look out for themselves, too, but many do not. A new study released Wednesday shows that it’s not a selfish act — in fact, taking care of yourself pays off for both the caregiver and patient.
“Family caregivers for people with Alzheimer’s or another dementia require tailored, affordable interventions to enable them to cope without becoming depressed, which is bad for the caregiver and also for the person they are caring for,” said Gill Livingston of University College London, who led a study looking at one particular program for Alzheimer’s caregivers.
They enrolled 260 family caregivers in a program that included education about dementia, caregiver stress, and where to get emotional support. It provided techniques for managing dementia patients, who can often be combative, as well as for relaxing, banishing unhelpful thoughts, planning for the future, and even having a little fun sometimes.
It worked, they told the Alzheimer’s Association International conference in Copenhagen. After a year and a half to two years, the people who took part in the Strategies for Relatives (START) program improved on measurements of depression and anxiety, and costs for care actually went down.
“It hit me like a ton of bricks."
It’s something that Luanne Becker knows she needs to do more of. Becker, now 57, was stunned when her husband, Bob, was diagnosed with Alzheimer’s at the very young age of 58. “It hit me like a ton of bricks,” she told NBC News. The Beckers ran a two-person video editing, production and consulting business in Cleveland, Ohio.
“I (Bob’s caregiver), sank into a combination of anxiety and depression, unable to comprehend what to tackle first. Should we try to work more (for financial reasons) or less (due to the added stress and increasing limitations)? “ Luanne wrote in an essay about her situation. “I consider that first year of Bob’s diagnosis our ‘lost’ year. I was barely functioning. Everything was changing. I often couldn’t fathom a reason to get up in the morning.”
Only a year later, at the end of 2012, it became obvious that Bob couldn’t work any more. Luanne wound up with three part-time jobs and one more full-time job — caring for Bob.
“I sure a put a lot of stress on myself,” Luanne said. “I am realizing I do need help. Right now I get a three-hour break when Bob goes to Bible study once a week.”
She has found, however, that activities that take care of both herself and Bob are reaping benefits for the two of them.
They found several programs at the nearby Cleveland Clinic, including “Fit in Fairview”, which combines walking with doctors’ talks; an exercise program and walks with the Cleveland Hiking Club. “I began to cook from scratch more often, including many more vegetables and fruits; we also became better at controlling portion size. Bob has lost weight and is probably healthier than he has been in years,” Luanne added.
They also joined an Alzheimer’s Association support group. “I can remember the first time we attended ... for me, it felt like it was the first time I had relaxed in nine months,” Luanne wrote. “Here were other people who understood exactly what we were going through. We did not have to put on a false front … we could talk freely, let down our guard. We shared challenges and observations and tips.”
Luanne was pleased to see how well some of the tips worked. “I play his music more,” she said. “He is happier when he is listening to music. You have to find things that are easier. I got him an iPad so he can still read the newspaper.”
The effects were startling. Bob regained some of his executive function, that ability to make decisions that marks Alzheimer’s decline. “After I started playing his music, I was on the computer one day paying bills and he just walked up and said ‘I am going to go down the street and visit my friend.’ I don’t remember in the past year when he said, ‘I am going to go do this’ and then do it,” she said.
Now the Beckers show their documentaries at a regular monthly meeting of the group. “Our group officially became the ‘Forget-Me-Nots’ and we now are looking into becoming more vocal as advocates in our local communities,” she said. That includes finding restaurants that can cater to their needs, including wait staff who know to talk slowly and be extra patient.
"You need a break and you need it now, and regularly."
Alzheimer’s affects more than 5 million Americans, a number projected to soar to 13 million over the next 35 years. A study published earlier this year suggested it’s a big killer, taking down more than 500,000 Americans every year.
There's no cure and doctors are just beginning to find ways to prevent it.
Studies have found that 20 percent of women cut their working hours from full-time to part-time while caring for someone with Alzheimer's 65 percent of caregivers for patients with dementia are women like Luanne Becker.
Now she’s one of those dishing out advice to others.
“Accept (and ask!) for help,” she writes. “Be specific … you need a break and you need it now, and regularly. Don’t live in fear of what others will say. Speak out! Educate those around you. Encourage everyone to get involved to both understand and eradicate this disease. Your life, and that of your spouse, friends, parents, grandparents, children, and grandchildren depend on it.”