Impact of TD on Caregiver Quality of Life
Richard Jackson, MD, and Micheal Asbach, DMSc, PA-C, discuss the impact of of tardive dyskinesia (TD) on a caregiver’s life and work, highlighting the need for clinicians to support all allies in their patient’s support network.
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Richard Jackson, MD: But now this similar survey, a similar survey, actually also looked at it from the angle of the caregiver. So what were some of the notable findings from the caregiver survey research?
Micheal Asbach, DMSc, PA-C: Yeah, from a caregiver perspective, things are, in my opinion, similar to what we saw from the patient reported outcomes. Caregivers, over 90%, reported that TD had a moderate to severe impact on the patient's sleeping habits, their ability to exercise or participate in household chores. Over 80% of caregivers reported that the cared-for patient felt frustrated, sad, worried, unmotivated, or embarrassed, and the mean caregiver reported score for the social impact of TD was 2.9 on a 5-point scale and increased with reported severity of TD. Over three quarters of caregivers reported that TD impacted patients' ability to socialize with others, including friends, as well as difficulty leaving the house. Similarly, over half of caregivers reported that acquaintances sometimes or often looked and asked if the patients were having issues with their movements; they noticed them. More than 80% of caregivers reported a moderate to severe impact of TD on the patient's independence and their ability to work. The caregiver article also explored the impact of TD on caregivers themselves, not just the patient. Can you share maybe the results that the caregivers reported on their own lives as a result of TD?
Richard Jackson, MD: Sure, and it makes good sense that a caregiver who is often a loved one, and a caregiver is a wide term, often a care partner in providing day-to-day activities with this person, is likely to impact the caregiver as well. And the survey shows that the scores, again, on a 5-point scale, 2.1 for TD-related caregiving tasks, 2.5 for psychological wellbeing of the caregiver, and 2.7 for caregiver daily activities. All these impact scores increase with TD score severity. Nearly 1 in 4 of the caregivers, 23.5%, reported severe impact across all three domains. Caregivers reported that the most burdensome task was helping patients with things like bathing or showering. However, the majority of caregivers did not consider helping patients with any individual task burdensome. So, you can see from the caregiver's perspective when they're describing their own burden, they often underestimate what that burden is because they don't want to look like caring for the patient, or the person with TD is the burden itself, but it certainly takes a toll. Caregivers assisted mostly with things like shopping for groceries, preparing meals, managing medications, household chores, and driving a car. Over one-third of the caregivers reported often or always feeling anxious or worried because of the patient's TD. So, not only is the patient anxious and worried and embarrassed, but you can see that overflows into the caregiver. About 30% of the caregivers reported that the patient's TD often or always impacted their ability to enjoy things they do for fun, to join in on social activities, to socialize with their own friends or to date or to meet new people; 29.7% of the caregivers reported that the patient's TD impacted their emotional closeness with the patient quite a bit or very much. Tardive dyskinesia was also reported to affect caregivers' professional lives. Of those who were employed, nearly half experienced overall work impairment. Caring for patients with TD prevented approximately one-quarter of caregivers from working a full-time job or arriving as scheduled. So of course, while you're managing the patient with tardive dyskinesia, you have all your own day-to-day responsibilities and activities to tend to, and it takes quite a toll not only on the patient but the caregivers themselves.
Micheal Asbach, DMSc, PA-C: Yeah, wow, that really paints a picture of what impact TD not only has on the patient but on those around them, their loved ones, their family, their friends. Why is it important for us as clinicians to think about the impact on caregivers? Those caregivers may not be our patients. Why is this something that we should think about?
Richard Jackson, MD: Because it's the overall life and activities of patients that we're really focused on and very much part of that is family, friends, occupations; caregivers are a big part of their lives. And although most caregivers are not going report that those tasks are burdensome, they report that their own psychological well-being, their daily activities and professional lives are significantly impacted by these tasks. So, that subjective caregiver burden is a risk factor for the caregivers and for the patients. So, to better assess the overall impact for any patient is also to impact those that are very much involved in their lives, such as caregivers. These results also demonstrated that TD imposes a substantial burden on caregivers' professional lives that we have to take into account as we look at the overall toll of this movement disorder, tardive dyskinesia.
