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Susan Hirsch was visiting her father in the hospital where he was recuperating after a fall and was shocked to find him – long devoted to her mother – flirting with a nurse as if he were “17 and in the Navy again,” she said.
Hirsch, a 67-year-old memory care educator from Palmyra, Pennsylvania, scolded her father. But the admonishment only enraged the 93-year-old man; she recalled him saying, “in not nice words,” to get out of his room as she scuttled away.
More than 11 million adults in the United States are caring for people diagnosed with Alzheimer’s and other forms of dementia. In addition to memory loss, most people with dementia will experience mood and behaviour changes including aggression, apathy, disorientation, depression, wandering, impulsivity and delusions.
Many caregivers describe mood and personality changes as the most upsetting symptoms. While antipsychotic and sedative medications are often used to manage dementia-related mood issues, they have limited efficacy.
To get on top of – and feel less toppled by – mood changes, it’s helpful for caregivers to remember that those shifts are caused by changes in the brain, said Dr Nathaniel Chin, a geriatrician and associate professor in the department of medicine at the University of Wisconsin-Madison.
“They’re no one’s fault,” he said, and recognising this can help you “feel less upset at your loved one.”
That day at the hospital, for example, the nurse followed Hirsch into the hall and gently explained that her father, who had shown milder symptoms of dementia before, was not acting out on purpose. “She didn’t reprimand me, and it was very helpful,” Hirsch said; the conversation helped her cope with her dad’s mood changes until he died three months later.
Personality and mood changes are often caused by deterioration in parts of the brain that control attention, learning, feelings and other faculties. For example, a person who has lost cells in the frontal lobe, which controls focus and behavior, may become more passive as the ability to plan diminishes, according to the Memory and Aging Center at the University of California, San Francisco; he or she may also lash out as impulse control wanes.
Additionally, people with dementia have less brain energy to process and adjust to sensations (such as pain or fatigue) and environmental stimuli, Dr Chin said. Many experts also agree that people with dementia have lower stress thresholds than they once had and might tip into feeling overwhelmed more quickly. This is the point when someone with dementia might suddenly become agitated or combative or begin “screaming and yelling out,” he said.
As the disease progresses, people lose language skills and communicate more through behavior, said Fayron Epps, a nursing professor at the University of Texas Health Science Center in San Antonio. For example, a person may need to use the restroom, but can’t convey that verbally, and might bang on something to express frustration, DrEpps explained. “As a caregiver, you really have to investigate where this mood is stemming from,” she said.
Dr Helen Kales, a geriatric psychiatrist and chair of the department of psychiatry and behavioural sciences at the University of California, Davis, conducted research with colleagues and found that caregivers who have a system for addressing behavioural symptoms experience less stress than other caregivers.
They developed a caregiver education programme, known as the DICE Approach, which stands for: Describe, Investigate, Create and Evaluate. The approach teaches caregivers to describe mood changes in detail (taking notes on when, where and even with whom they occur), investigate why they might be happening, create informed responses and evaluate their success.
Dr Kales described a case in which DICE-trained caregivers assisted and soothed a nursing home resident who was wandering at a certain time every day. After investigating possible causes and learning that she used to be an avid gardener, the caregivers began taking the woman to the nursing home’s courtyard once a day and helping her “get her hands in the dirt.” This dose of daily “gardening” stopped her wandering, Dr Kales said.
DICE can also help caregivers with personal overwhelm. By learning to note who’s in the room or what’s playing on TV when symptoms occur, caregivers can become adept at detecting patterns, seeing issues from their care partners’ perspective and creating plans to reduce or eliminate symptoms. This might include turning on a mellow YouTube cooking video instead of the 5 o’clock news or bathing less frequently if doing so daily is a flashpoint, Dr Kales said.
And if the person you’re caring for becomes violent, it’s important to have an exit plan, experts advised. Ms. Hirsch recommended bringing your phone with you if you need to leave the house, so you can call for help to keep yourself and your loved one safe.
People with dementia may not understand exactly what you’re communicating, but they will comprehend your tone and body language, said William Haley, a professor of ageing studies at the University of South Florida, who advised doing your best to speak calmly, with your face and posture relaxed.
And, he said, don’t get too hung up on the facts. Telling a person with dementia in a cranky, corrective way that it’s Wednesday, not Thursday, could rattle them more. And reminding someone of a bigger sorrow they’ve forgotten – that a spouse has already died, say – can be devastating, Dr Haley said.
Instead, if your loved one asks about someone who’s no longer alive, just say you think that person is fine and change the subject, he suggested. “It’s not an enduring lie,” he said. “And to me, it’s more moral than confronting them with an awful truth that will just cause them grief and pain.”
It’s a philosophy employed by Martin Schreiber, author of My Two Elaines, a book about his experience caring for his wife who lived with Alzheimer’s for over 15 years. Some caregivers resist fibbing, but bending the truth can be a way of graciously “joining them in their world” and relieving your own stress, too, said Schreiber, who is also the former governor of Wisconsin.
Rather than arguing with Elaine if she asked for a glass of wine shortly after breakfast, he eventually learned “that ‘No’ is not the answer,” he said. “The answer is: ‘Do you want red wine or white wine? Do you want a larger or smaller glass? And should we have it with the neighbors? And maybe while we’re thinking about that, let’s have a cup of coffee.’”
“You cannot successfully confront this disease,” he said, but fibbing and redirecting are two helpful strategies he and many other caregivers have used to provide comfort and support.
Making sure that people with dementia get regular exposure to natural and other forms of bright light can improve their sleep and mood, Dr Kales has found in some of her research. And getting solid nightly sleep can reduce so-called sundowning, the meltdowns that can occur with dementia late in the day, or any time of day, if there’s enough stress and fatigue brewing.
Taking a morning walk or doing another activity outside can benefit you both, DrKales said. But if getting outdoors isn’t possible, good alternatives include having your loved one sit facing a window or in front of a light therapy box (a device that mimics daylight) for 30 minutes or so, she added.
Since boredom can cause mood swings, Dr Kales and her colleagues created a list of 96 activities that people with dementia can do alone or with their caregivers. Dr Haley has also heard about people with dementia for whom folding towels, sweeping a long driveway and, in the case of one retired schoolteacher, “grading papers” (marking up a stack of printed emails provided by her caregiver) have become favourite pastimes that give them satisfaction and a sense of pride, he said.
Dr Epps noted that watching online “sermonettes” – abbreviated church services specifically designed for people with dementia – can be comforting to religious people who can no longer attend church in person.
But there are many other ways caregivers can adapt experiences. Charlie Kotovic, 62, noticed that his wife, Kathryn, 64, who was diagnosed with early-onset Alzheimer’s four years ago, was becoming anxious on long-distance trips. So he scotched their plans to do more far-flung traveling.
Driving to their family cabin a couple of hours from their home in Minneapolis has become their new favourite getaway – still familiar for her and manageable for him, Kotovic said. And listening to old show tunes while they’re en route helps head off his wife’s occasional “spiral-down sad moments,” he said.
While Kathryn was growing up, her mother often played old Broadway songs. “That music really takes her back,” Kotovic said. “It’s her happy place.”
By Louisa Kamps © The New York Times Company
The article originally appeared in The New York Times.
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