Influential factors when making decisions about dementia medications in memory assessment services; a focused ethnography and interview study

Background

Discussing pharmaceutical treatment for dementia is challenging because of variation in disease progression, lack of curative treatments, and communication difficulties. Research in the context of dementia suggests shared decision making is limited, this study examined how dementia medications are discussed in practice.

Methods

Focused video/audio ethnography of clinical appointments (n = 14), semi-structured interviews with patients/supporters (n = 23) and clinicians (n = 5) were employed to examine communication practices.

Results

Two themes developed; Framing and understanding of information in the context of uncertainty explores how uncertainties around risks and benefits are understood. ‘Not worth the risk’ or ‘nothing to lose’ presents how patients/supporters and clinicians balance individuals’ contexts/perceived risks/benefits. In the absence of certainty around potential benefits, risk often informed decision-making, particularly for frailer or more vulnerable patients.

Conclusions

Clinicians should be aware of their influence on decision-making and be cognisant of the way that they frame opinions, which are largely based on clinical experience. Prescribers would benefit from a standardised information source which enables them to describe the likelihood and magnitude of benefits and side effects in a universal way. Accessible information for patients and relatives about the same is also recommended. Patients and relatives make their decisions to take medications in the context of relative uncertainty about the likelihood of benefits, with risk playing a pivotal role in decision making for some.