Medicines use by people with dementia in Saudi Arabia: an interview study of patient and carer experiences

Abstract Background People with dementia (PwD) are often prescribed complex medication regimens, which can be difficult to manage and may place a significant burden on both patients and their carers.[1] Whilst studies have explored these issues globally, little is known about experiences in Saudi Arabia.[2] Aim To explore the experiences and perspectives of community-dwelling PwD and their family carers in Saudi Arabia regarding medication use and management and identify key barriers and facilitators. Methods Participants were purposively sampled and recruited from geriatric clinics in two hospitals in Riyadh. PwD were eligible if they had a documented dementia diagnosis (any type), prescribed ≥5 medications, and could participate in an interview. Carers had to have contact with the PwD ≥3 times/week and provide help with medication. PwD-carer dyads were invited, but individual PwD or carers were included if only one consented. Semi-structured interviews were conducted in person, via Zoom, or by telephone; the topic guide was informed by published literature, refined through research team discussions, and piloted for clarity and relevance. All interviews were conducted in Arabic, audio-recorded, transcribed verbatim, and translated into English. Transcripts were independently coded by two researchers using inductive thematic analysis. Results Forty interviews, lasting 20 minutes on average, were conducted between June 2023 and January 2025 (n = 16 PwD, n = 24 carers). Many PwD expressed uncertainty about their medicines, often relying on carers for support: ‘I don’t really know; they [carers] give it to me, and I take it’ [PwD_7]. Carers assumed greater responsibility for medication management as dementia progressed, often after PwD made errors. Participants reported that strategies such as maintaining routines, using compliance aids, and relying on family support facilitated medication management. While PwD generally viewed medicines positively, carers expressed concern about medication refusal, difficulty with swallowing large tablets and the burden of polypharmacy: ‘What upsets me is that the number of medications is too much… he [PwD] keeps saying, “I’m fed up…”’ [Carer_19]. Other obstacles included fragmented care due to multiple prescribers, follow-up in different hospitals, and limited counselling/education provided by healthcare professionals. Carers expressed interest in PwD receiving structured medication reviews and highlighted the potential for pharmacists to play a more proactive role in medication education, organisation, ongoing monitoring and review, especially in the context of complex regimens: ‘We’ve wanted a [medication review] service like this for a long time … it would’ve been a huge help to have someone review and organise her medications for us’ [Carer_11]. Conclusion This study highlights the central role of family carers in assisting PwD in using and managing their medicines and the potential for pharmacists to contribute more actively through education, communication, and structured medication review. These findings echo international studies reporting similar challenges with polypharmacy and medicines administration and align with global calls for enhanced pharmacist involvement in dementia care. A key strength is the inclusion of both PwD and carers, offering complementary perspectives; however, findings are limited to two hospitals in Riyadh and may not be generalisable to other regions or healthcare systems.