Family caregivers' perspectives on pharmaceutical care for people with dementia living at home: a qualitative study

Abstract

Dementia is currently the fastest growing cause of death in the Netherlands. Dementia is related to a significant increase in the use of medication to treat related symptoms and more frequent medication problems. About 75 percent of people with dementia live at home with treatment in primary care. Community pharmacists can have an important role in optimizing medication treatment, but it is unclear how their expertise can best be used. Family caregivers play an important role when caring for people with dementia. Their experiences and ideas are important in developing an appropriate pharmaceutical care intervention. To identify the experiences with and needs of family caregivers concerning pharmaceutical care for people living at home with dementia in the Netherlands. Qualitative semi-structured focus groups and individual interviews were conducted in November and December 2024. The study population consisted of family caregivers of persons with dementia living at home and were recruited through pharmacies, Alzheimer cafes and case managers of different regions in the Netherlands. Interview topics were related to the use of and trust in medication, prescribing and obtaining medication, and interprofessional collaboration. Focus groups and interviews were audio-recorded, transcribed verbatim and thematically analyzed. Two focus groups and eight individual interviews were conducted with 19 participants (12 partner of, 6 child of, and 1 acquaintance of a person with dementia), in total. Four main themes were identified: Medication management challenges, opinions about medication treatment, tasks and responsibilities concerning (pharmaceutical) care and medication aids and management tools. Family caregivers emphasized the complexity and high care burden in medication management of their loved one with dementia. They highlighted the importance of being recognized as a family caregiver in the pharmacy and thinking along with them to make pharmaceutical care more manageable for the person with dementia. Family caregivers indicated a need for information about the medication and treatment of the person with dementia and saw medication reviews as a valuable care task. There is no “one-size fits all” approach when using medication management tools. Therefore, family caregivers stress the importance of individualized pharmaceutical care. Conclusion Medication management in people with dementia is complex and a significant care burden on family caregivers. Primary care providers may reduce this complexity and care burden by recognizing the situation and providing pharmaceutical care according to patients’ and family caregivers’ needs.