REM sleep behavior disorder affects both Parkinson’s patients, partners
Couples rely on open communication, bedtime changes to prevent injury
REM sleep behavior disorder (RBD) can mean restless nights for people with Parkinson’s disease and their partners, and add to symptoms, such as cognitive impairment and problems with blood pressure or digestion, that make daily life more difficult for both, a study shows.
To ease any tension, couples often rely on open communication, sometimes using humor, and make practical changes such as calming bedtime routines, sleeping far apart, or using extra pillows to prevent accidental injury from acted-out dreaming.
While partners often keep their concerns to themselves to avoid worrying the person with Parkinson’s, they emphasized the importance of being heard and supported, especially during medical appointments. “These findings will help to optimize care for [people with Parkinson’s] with RBD and their partners,” the study’s researchers wrote in “The impact of REM-sleep behavior disorder on people with Parkinson’s disease and their partners,” which was published in npj Parkinson’s Disease.
People with Parkinson’s often have problems that go beyond motor symptoms, one being RBD, which can precede Parkinson’s by many years. In RBD, people act out their dreams, sometimes moving or talking in their sleep. This can disturb their rest and that of their partners.
RBD’s effect on patients. partners
To understand how RBD affects the quality of life of patients and their partners, the researchers reviewed the medical records from 829 people with Parkinson’s and 452 partners from a study in the Netherlands called PRIME-NL. The patients were on average 71 years old and had had a diagnosis of Parkinson’s for an average of 7.6 years. Among the patients, 176 (21%) had either self-reported or probable RBD, based on their answers to a questionnaire.
According to their partners, half the patients acted out their dreams either sometimes (34%) or often (16%). Many also talked during sleep, either sometimes (39%) or often (21%). While about two-thirds of patients (64%) and partners (70%) didn’t report anxiety from RBD, many expressed a fear of injury.
RBD was linked to autonomic symptoms, which can include poorly controlled blood pressure or digestive problems. It was also linked to more severe depression and anxiety, and to a lower health-related quality of life. This association was largely explained by the presence of cognitive impairment and autonomic symptoms, however, and the link mostly disappeared after adjusting for these factors.
Similarly, for care partners, RBD was linked to stress and lower quality of life. However, when adjusting for cognition and autonomic symptoms, these effects became smaller.
A ‘strain on relationships’
The researchers also interviewed 14 pairs of people with Parkinson’s who said they had symptoms of RBD, and their partners. Four patients had RBD confirmed by polysomnography (PSG), a test that records brain activity, heart rate, and breathing patterns during sleep.
The negative effects of RBD often started before Parkinson’s was even diagnosed and its “symptoms gradually progressed from increased dreaming to talking or shouting, and eventually kicking or hitting,” the researchers wrote. Many people said difficulty sleeping began early.
“I have always been a bad sleeper,“ one patient said. “Even before I knew I had Parkinson’s, I also had dreams, but not to the extent of after being diagnosed, and after I started taking medication. I do not know whether the medication has an influence on this, but it actually started quite quickly afterward.”
Acted-out dreams were often vivid and emotionally charged. “Those are often not the pleasantest dreams, often involving violence. I do not have the feeling that I am experiencing or processing trauma; it is quite bizarre sometimes,” one patient said.
RBD did put strain on relationships. Partners often lost sleep and felt anxious or tired during the day. “I personally think that it is somewhat unrecognized in Parkinson’s,” said one partner, who reported they often felt upset, especially during their partner’s aggressive episodes, but usually downplayed their feelings and sought help only when they felt overwhelmed.
To deal with these challenges, partners slept apart or turned their backs and used pillows, separate mattresses, or spare duvets. Because stress worsened symptoms, they adopted relaxation and bedtime routines, skipped TV and computers, caffeine, alcohol, and sometimes consulted sleep psychologists.
Couples did value open communication, however. “Some approached RBD with humor, making jokes about bedtime behaviors, together or with close friends and family,” the researchers wrote. Deeper talks were rare, unless prompted by a neurologist.
“With only a small portion of [people with Parkinson’s] receiving an RBD diagnosis using PSG in clinical practice, clinicians should consider that [patients] are often unaware of RBD symptoms and lack sufficient information,” wrote the researchers, who said more studies on “effective strategies for managing RBD” are needed.
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