Background

Symptom burden at the end of life in dementia remains high. While Namaste Care may enhance comfort, its effect on symptoms during the last week of life has not been established.

Aim

To assess the frequency of symptoms experienced by nursing home residents with dementia during the last week of life, and to evaluate the delivery of Namaste Care Family during the last week of life and its effect on comfort and symptom burden.

Design

This mixed-methods study combined quantitative data from a cluster-randomised controlled trial with semi-structured interviews. Symptoms were assessed using the End-of-Life in Dementia (EOLD) Scales – Symptom Management (SM; family perspective) and Comfort Assessment in Dying (CAD; staff perspective). Multilevel analyses examined the effect of the Namaste Care Family programme on symptom burden. Interview data was analysed using a content analysis.

Setting/participants

Ten nursing homes implemented the Namaste Care Family programme, while nine provided usual care. During the study, 103 of 231 residents with moderate to advanced dementia died (47 intervention group, 56 control group). Interviews (N = 32) were conducted with family caregivers, staff and volunteers.

Results

Serenity (80%), discomfort (72%), and pain (70%) were most frequently observed. The programme had no significant effect on symptom burden (EOLD-SM -0.14 points, 95% CI -5.25, 4.96, p = 0.96; EOLD-CAD 0.35 points, 95% CI -1.98, 2.68, p = 0.77). Interviews showed difficulties in implementing the programme during the last week of life.

Conclusions

Comfort and distressing symptoms were both present at the end-of-life phase with dementia. The Namaste Care Family programme did not influence this.

Clinical trial registration

This trial was registered with the CCMO Research with human participants (ID 5692/5570).