Beyond the daily challenges of monitoring a person with dementia, caregivers in this study carried the additional burden of supervising potentially troublesome or dangerous nighttime activity as well. As they stepped into this nighttime supervisory role, caregivers began to experience an increase in worry, a loss of personal space, and disruptions in their sleep. These, in turn, contributed to loss of energy, changes in mood, decreased desire to connect with others, and decreased motivation to carry out routine tasks of life or engage in self-care. There was some indication that these difficulties negatively impacted quality of care as well. Below, we discuss caregiver difficulties associated with moving into a nighttime supervisory role. We then describe benefits to caregivers of using the NMS and suggest how these benefits may be conveyed.
Consequences of the Nighttime Supervisory Role
Increase in Caregiver Worry. Caregivers in this study had a lot to worry about: the deteriorating condition of the person with dementia, managing care needs such as medications or doctor appointments, the unknown future, and added household responsibilities. Once the person with dementia began to get up during the night, however, caregiver concerns escalated. They now worried about the individual’s safety during the night and their own abilities to awaken to ensure that safety. Some, most notably daughters caring for mothers, also worried about the emotional states of care recipients who were unable to verbally communicate their needs during nighttime activities.
Dimensions of caregiver worry most affected were uncertainty and fear. Intolerance of uncertainty has been associated with, and may play a central role in, the development and continuation of worry (Dugas, Freeston, & Ladouceur, 1997; Lachance, Ladouceur, & Dugas, 1999). Referencing a cognitive model of adult worry developed by Dugas, Gagnon, Ladouceur, and Freeston in 1998, Laugesen, Dugas, and Bukowski (2003) stated that people are intolerant of uncertainty when they “find uncertain situations stressful and upsetting,” “believe that unexpected events are negative and should be avoided,” and “think that being uncertain about the future is unfair” (p. 56). When caregivers were not using the NMS, they found the uncertainty associated with nighttime activity both stressful and upsetting. One wife, for example, whose husband had slipped out one night and attempted to cut down a tree, lamented:
God I’d hate to see him out there in the middle of the night just wandering around and I wouldn’t know [italics added] how to even find him…. Jesus, you know, I’m thinking he’s out here with—there’s, there’s snakes around. I don’t know [italics added] what they do at night but I worry about it.
Uncertainty was also a fact of life. As one daughter stated, “Sometimes [Mom] gets up…and some nights she sleeps through the night, um, and it’s very erratic. There’s no way of predicting that.” Caregivers often noted how the uncertainty of “not knowing” contributed to their worry, as expressed by one daughter who “worried about [Mother] getting up and maybe falling and not being able to know [italics added] that she’s fallen until I get up to go check on her,” or by a granddaughter who spent time “just worrying or wondering if [her grandmother would] fall” during the night. Caregivers expressed uncertainty regarding whether the person with dementia was in or out of bed, where they might be wandering, what they might be doing during the night, and their own ability to awaken in time to prevent unwanted events.
Fear was another dimension of worry for these caregivers. As one wife stated, “I used to be scared to go to bed at night ’cause I never knew what he would do.” Caregivers’ greatest fears were that the person with dementia would fall: “Fallin’ is my biggest concern, ’cause he has fallen and hit his head before”; or that the person with dementia would leave the house at night or would otherwise suffer harm: “[I was] scared to death that he was gonna get out or get away.” Fear was sometimes grounded in harm that had actually occurred during a nighttime wandering episode—a husband who had fallen and hit his head or a mother who fell in the bathroom, broke a hip, and was not found until the following morning. Caregivers also feared what could happen, such as the wife who feared snakes or other “wild animals” might harm her husband when he went outside at night.
A few caregivers described cognitive components of worry, specifically negative anticipation and rumination. Negative anticipation consisted of thinking about unpleasant and undesired possibilities, as expressed in the statement, “Before [the NMS], every time he moved in the bed I would wake up thinking he was going to fall out of bed or get out of bed or do something like that.” When caregivers ruminated, they dwelt on their thoughts, running them over and over in their minds. “I go to bed, I lay there and I think of all these things that are going on in my head,” described one caregiver’s experience of rumination. Negative anticipation and rumination may account for nearly 30% of the thoughts that make up the cognitive component of worry (Szabó & Lovibond, 2002).
Disruptions in Sleep. Caregivers found that nighttime supervision disrupted both the quantity and quality of their sleep. The amount of sleep caregivers lost in the nighttime supervisory role depended on: (a) the number of times the person with dementia got up during the night and how long it took to get him or her settled back in bed, (b) how often the caregiver actually heard the person get up (i.e., how soundly they naturally slept or how close they slept to the person with dementia), and (c) how compelled a caregiver felt to stay awake to listen for, or get up and check on, possible nighttime activity.
Loss of sleep was also closely related to worry, as fear and uncertainty motivated caregivers to stay awake to listen for nighttime activity. In addition, time spent in negative anticipation and rumination was time spent not sleeping. As one daughter stated, “I couldn’t sleep ’cause I was worried about, you know, she’d do something…it’s just a worry.” Another daughter gave an extreme example of how thoughts generally could affect sleep: “The train just keeps going with the thought, just keeps going on, and then I’m laying there for like another hour, another hour and a half, and then I go to sleep.”
Quality of sleep was also affected by nighttime supervision duties as their fear and uncertainty motivated caregivers to stay awake to listen for nighttime activity or attempt to maintain a level of awareness even as they slept. As one daughter stated, “When I didn’t have [the NMS] I, you know, couldn’t sleep soundly because I would always be worrying she [was] up in the bathroom.” Another said, “Even though I don’t necessarily wake up a hundred percent, I’m still aware and so I’m not getting the, the deep sleep that I need.”
Loss of Personal Space. Nighttime supervisory roles also resulted in loss of privacy, or personal space, for some caregivers. A few lost physical space, such as a wife and a daughter who temporarily slept on couches to be closer to the person with dementia. The need to be constantly aware of the person with dementia meant loss of mental and emotional space, or time to one’s self, as well. As one wife described, “I had to be pretty much alert 24 hours a day…. I was at my wit’s end…. They’re your responsibility 24/7.” In addition to maintaining a sense of vigilance throughout the day, when a person with dementia wandered, the caregiver had to remain on duty at night as well. As a granddaughter expressed, “I would have to just, you know, get up on my own and check on her throughout the night, just to make sure she’s OK.” The perceived need to be constantly vigilant could be stressful and exhausting, as indicated by a daughter who stated:
I need to get some respite care because of, it’s just really weighing down on me…getting, you know, harder and harder because I’m my mother’s sanctuary. She doesn’t see me, she gets very upset and she wants to know where I am. And, uh, if I’m not right where she can see me, she keeps yelling and calling.
Secondary Consequences. Worry, sleep disruptions, and loss of personal space eventually took their toll on many caregivers in this study. As noted above, worry and the perceived need to be constantly available to the person with dementia contributed to sleep disruptions. Poor sleep had its own consequences, including:
- Decreased energy: “If you’re not [feeling well from a good night’s sleep], you’re really dragging during the day.”
- Changes in mood, such as feeling “irritable,” “cranky,” “depressed,” or “hopeless”: “The worst scenario is bad ’cause I have gone through no sleep at all, and then I’m just real irritable the next day.”
- Decreased desire to connect to others: “[Without sleep] I’m cranky, cranky, and uh, when that happens, I usually just go outside, try to be away from people.”
- Less motivation to carry out routine tasks of life or engage in self-care: “I was just so worn out that I just didn’t want to eat.”
These changes in caregiver energy, mood, connectivity to others, and motivation not only adversely affected the caregivers’ quality of life but also had the potential to affect the person with dementia. As one caregiver stated, “If this year had passed without me having the system, I would probably…not be as good a caregiver because when I don’t have enough sleep, it really, it really has an impact.” A daughter perhaps summed it up best by saying:
I’m exhausted all the time and I don’t feel like doing things; it’s really hard to make myself take care of things and it’s hard for me to even take care of her to the best of my ability when I’m tired…it’s more depressing, you know, more tendency to feel depressed when I’m tired…and sorta [sic] helpless and hopeless and all that.
Comments such as “I was at my wit’s end,” ”It’s just really weighing down on me,” “You’re really dragging during the day,” and “I always feel as if oh, my god, it’s another day” conveyed the stress and weariness experienced by some of these beleaguered caregivers as they described life without a NMS.
Benefits to Caregivers Using the Nms
Peace of Mind. When asked how using the NMS had changed their lives or their experience of caregiving, participants in the experimental and crossover groups overwhelmingly reported that the system had given them “peace of mind.” For them, peace of mind was conveyed as the NMS alleviated the worry associated with nighttime wandering activities and enabled them to better balance their needs for personal space with their desires to remain connected to the person with dementia during the night. Most caregivers noticed a change within a month. They described their newfound peace of mind by saying:
- “Peace of mind is just relaxing in your life, not being totally stressed.”
- “I just had peace of mind knowing that I didn’t have to worry.”
- “...less worry; everything revolves around the worry part.”
- “It’s a wonderful peace of mind. I mean, it relaxes you to a certain degree…. Oh Lord, it’s the only peace of mind I have.”
Worry gave way to peace of mind as knowledge replaced uncertainty and as trust in the system replaced fear. Once the NMS was installed, caregivers knew whether the person with dementia had exited the bed, what part of the house he or she was in, or whether he or she was attempting to leave. Knowledge replaced uncertainty, which helped alleviate worry. As one wife stated, “To know where he is and what he’s doing, uh, has really lightened up the worry a lot.” Caregivers also no longer had to wonder whether they would awaken in time to care for the person with dementia, as expressed by a daughter who said, “I think I’m less worried because I know that I’ll get up when she gets up,” and by a wife who stated, “I knew that if he left the bed it was going to wake me and that would be good.”
Fear diminished as caregivers came to trust that the system would reliably wake them the moment the person with dementia attempted to leave the bed. As one wife stated, “I don’t have to worry about him getting up and cuttin’ down trees in the middle of the night ’cause the equipment [NMS] works.” She added a comment about her initial weeks in the study: “[The researcher] kept saying, ‘Don’t rely on it [yet]. Don’t rely on it. You gotta wait.’ But I could see it was working, so I was relying.” (A reliability period of approximately 2 weeks occurred just after installation to ensure reliable system operation; caregivers were instructed not to rely on the system during this time.) A daughter elaborated:
Having the system has enabled me to go to bed calmly, not worried sick about whether or not my mother is gonna get up and when she would get up and where she would be and whether or not I’d know it. It has really helped me not have to be so concerned about that because I have peace of mind that the, the system is going to, um, wake me up in enough time, and I’m going to be able to get to her in time.
Another benefit (consequence) of using the NMS was that it allowed caregivers to balance needs for privacy and personal space with the need to remain in contact with the person with dementia. Because the sensors were placed in the bed of the person with dementia and the alert box at the caregiver’s bedside, caregivers did not have to sleep in close proximity to the person with dementia to hear him or her during the night. Because they trusted the system to wake them when needed, they could actually relax and not have to maintain that constant vigilance. As one husband stated, “I didn’t have to be quite as close on her as I did before, see. This [system] told me when she got up…and then I’d be alert and ready to go.”
The NMS allowed caregivers just a little bit of personal space during the time the care recipients actually slept at night and did so without sacrificing their connectedness to the person with dementia. By the time this study was conducted, the persons with dementia were largely unable to communicate their nighttime needs to caregivers, adding to caregiver distress. Another component of peace of mind was, therefore, the ability to know that the person with dementia still had a means of communicating during the night, albeit indirectly. As one wife stated, peace of mind meant “being able to know that the person you’re caring for, uh, still has contact with you even though you’re resting.” A daughter expressed it this way:
I had peace of mind that when I turned [the NMS] on, it would work and it would wake me up. Peace of mind is also, just knowing that there’s a system that, um, is enabling us to, it’s enabling my mother to communicate with me without having to communicate with me.
Better Sleep. The NMS had a variable effect on the amount of sleep caregivers got. A couple of caregivers, who were heavy sleepers, reported they got less sleep once they started using the NMS. As one said, “I’m more tired because I am getting up at night with her; but I need to, so the system, I guess it brings peace of mind, but it’s, I’m not getting more sleep because I have to get up. All the time my sleep is disturbed.”
Others reported getting more sleep as they relaxed their vigilance. “It allowed me to get more sleep, and I wasn’t having to just constantly listen for him to make a noise,” related one wife. It is possible that sleeping in one’s own bed, not engaging in negative anticipation or rumination, and being able to choose whether to get up to check on the person with dementia also contributed to increased sleep, but the extent to which these factors affected sleep could not be determined from the data.
Users of the NMS noted almost universally that the quality of their sleep improved once they came to trust that the system would reliably alert them to the nighttime activities of the person with dementia. They described their sleep as “better,” “more comfortable,” “more settled,” “more intense,” or “deeper.” For many, the changes in sleep quality were dramatic. For example, one woman who had cared for both her mother and husband before getting the system stated emphatically, “Man I didn’t even know I could sleep that hard…. I hadn’t slept soundly in years, honest to God, years.”
Before system installation, fear and uncertainty motivated caregivers to stay awake to listen for nighttime activity or to attempt to maintain a level of awareness even as they slept. As caregivers came to trust the system to actually awaken them as needed, they allowed themselves to relax and sleep a little deeper, as evidenced by the following comments:
- “I could sleep more comfortably and deep, more deeply because I knew that the…machine was working and it would wake me up if he got up.”
- “I had more settled sleep whenever I, I knew I could depend on this machine.”
- “My sleeping was a little more intense and better for me because I had the [NMS] to remind me when she got up.”
Energy for Self-Care and Care of the Person with Dementia. As worry subsided and sleep improved, many caregivers reported they had more energy and were beginning to engage in more self-care activities. As one daughter stated, “When you don’t have to worry or wake up during the night, you can sleep more and then you have more energy.” This increase in energy enabled caregivers to devote a little more time and attention to things such as their personal appearance, healthy eating, or care of the home. One caregiver, for example, stated that now “I do have energy…. I’ve gone on a diet. I’ve colored my hair…. I actually did something about it, and I think that this equipment is letting me do these things.” Another wrote in her feedback on the findings report, “I am able to walk with a friend two times a week because I am sleeping better at night. Without the NMS, I doubt I would have the energy or interest in doing that.”
A few study participants indicated that having the NMS also allowed them to function better as caregivers, as suggested by comments on two written feedback sheets:
- “I am so thankful for the NMS and the research team. They have improved the quality of rest I get as a caregiver so I can in turn provide better care for the patient, my mom.”
- “I believe that my ability to have my mother continue to live with us would be dramatically reduced if we didn’t have NMS. So, that means quality of care for the person with Alzheimer’s can be maintained so much longer with the NMS, because living at home with it is so much better than having to be moved to a nursing home.”