Medication process-related burden among informal caregivers of people with dementia: a nationwide cross-sectional survey in Germany

The medication process (MP) comprises all patient-related activities involved in medication use, from obtaining and organising medications to their correct administration and monitoring. In dementia, these responsibilities are frequently transferred to informal caregivers, adding to their already considerable burden from demanding care tasks. Although general caregiver burden is well documented and commonly assessed, little is known about the specific burden associated with MP-related tasks. Informal caregivers of people with dementia were asked to participate in a nationwide, anonymous, self-assessment survey. Here, we aimed to (i) identify key contributors to MP-related burden and correlate MP-related burden with the general caregiver burden, (ii) assess whether MP-related burden is different between informal caregivers who receive help from community nurses and those who do not and (iii) examine which community pharmacy services are deemed most valuable by informal caregivers of people with dementia. In total, 180 informal caregivers, aged 67.6 ± 11.1 years and predominantly female (76.7%), participated. (i) In the MP, 27.3% of informal caregivers perceived communicating medication-related information to the patient as a task with (very) high burden. Obtaining prescribed medication from the pharmacy and preparing medication doses for intake were perceived as (very) high burden for 4.4% and 5.7% of informal caregivers, respectively. There was no correlation between MP-related burden and general caregiver burden (r = 0.157; p = 0.053). (ii) There was no difference in perceived MP-related burden between informal caregivers who received support from community nurses and those who did not (H (5) = 1,760; p = 0.881). (iii) When visiting community pharmacies, 73.5% and 70.6% of informal caregivers deemed “fast service” and “comprehensive counselling for prescription medicines” to be (very) important. With respect to MP-related burden, patient-related tasks were perceived as more burdensome than organisational tasks. Support from community nurses did not affect the perceived MP-related burden. Community pharmacies, through low-threshold counselling and structured collaboration with prescribers, may play a key role in alleviating MP-related burden. German Register of Clinical Trials (DRKS.de), DRKS00036251, Registration date: 09 July 2025.