Agitation in Alzheimer’s disease (AD) and dementia is a commonly occurring and distressing symptom and is associated with rapid decline in cognitive functioning and higher health care resource use. According to a study presented at the 13th Clinical Trials on Alzheimer’s Disease Congress 2020, caregivers experience a substantial burden, including negative impacts on their own health, when agitation is present.
A cross-sectional survey was implemented in two phases: (1) an initial group of four caregivers participated in in-depth, semi-structured telephone interviews to ensure survey questions captured self-reported disease characteristics and caregiving burden in the target population; and (2) the final survey was administered to caregiver members of UsAgainstAlzheimer’s A-LIST® between April 2, 2020, and April 27, 2020.
Caregivers were included in the study if they were aged 18 years and older, had been caring for an individual with dementia or AD for at least one month, and were able to indicate whether the individual under their care has or had experienced symptoms of agitation. Caregivers were asked to report their own demographic characteristics, physical and mental health, health resource utilization, caregiver burden via the Burden Scale for Family Caregivers (BSFC) short form, employment status, work productivity impairment, and the availability of additional supports as well as agitation symptoms and therapies of the care recipient.
A total of 395 caregivers completed the survey. Most were 55 years or older (90.1%) and female (73.9%). The three most commonly reported caregiver comorbidities were sleep disturbances (42.0%), anxiety (41.5%), and depression (34.9%). The majority of care recipients were aged 70 years and older (85.3%), female (62.8%), and white (93.9%).
Among caregivers who reported agitation symptoms for care recipients (n=297; 75.2%), the most frequently reported symptoms were resisting care (69.4%); pacing, rocking, or restlessness (54.9%); and cursing or shouting (45.8%). More than two-thirds of caregivers of individuals with agitation reported that their care recipient received treatment (either pharmacologic or non-pharmacologic) to manage agitation symptoms, and 40.3% reported no or limited improvements for agitation symptoms with treatment. Less than half of caregivers were satisfied with treatments available for agitation symptoms (44.3%), and the primary reason for dissatisfaction was a lack of change/worsening of behavioral symptoms (48.1%).
A higher proportion of caregivers of individuals with agitation reported providing support with activities of daily living (86.5%) compared with those without agitation (73.5%). Caregivers of individuals with agitation reported higher mean levels of burden per the BSFC score than those without agitation (18.5 vs. 14.6).
Approximately 70.4% of caregivers of individuals with agitation symptoms reported having severe to very severe burden (BSFC score greater than or equal to 15) compared with 56.1% of those caring for a patient with no agitation. A higher percentage of caregivers of individuals with agitation symptoms reported making job-related decisions due to caregiving (51.9%) compared with those without agitation (39.8%). Higher levels of work productivity impairment were reported among caregivers of individuals with agitation (35.7%) versus without agitation (24.2%).
The study is limited by selection and recall bias.
“These findings underscore an unmet need for interventions to manage agitation symptoms that preserve quality of life for patients and caregivers alike,” the researchers concluded.
The study was funded by Otsuka America Pharmaceutical, Inc.
Presentation: P072: Caregiver perspectives on the burden and impact of agitation in caring for loved ones with Dementia/Alzheimer’s disease: A collaboration with UsAgainstAlzheimer’s A-LIST®. Presented at the 13th Clinical Trials on Alzheimer’s Disease Congress 2020, Nov. 4-7, 2020.