Caring for people with advanced dementia living in nursing homes

Inclusion criteria: Inclusion criteria for residents: 1. Resident is a permanent resident within the nursing home (i.e. not present for receipt of respite or day care) 2. Resident has a formal assessment of advanced dementia, (based on the Functional Assessment of Staging of Alzheimer’s Disease (FAST) score of 6‐7) made by the nursing home manager or another experienced member of staff 3. Resident lacks capacity (capacity assessed and documented with an appropriate tool) 4. Resident has a key worker member of staff willing to provide proxy outcome data Inclusion criteria for informal carers: An informal carer meeting all of the following criteria will be eligible to join the feasibility trial if they: 1. Are above the age of 18 who self‐define as a family member or friend who acts as an informal carer for a participant with advanced dementia 2. Have the ability to communicate in English Inclusion criteria for nursing home staff: Health and social care staff paid to provide care to individuals with advanced dementia within participating nursing homes will be eligible to participate in the study. This may include nursing home managers, Registered Nursing staff, care assistants and activity coordinators. Exclusion criteria: Resident exclusion criteria: A resident meeting any of the following criteria will not be eligible to participate in the feasibility trial if the resident: 1. Is permanently bedbound and unable to leave their room 2. Is currently or recently involved in another research study or trial that conflicts with Namaste Care or with data collection during the course of the Namaste Care trial 3. Has the capacity to consent Informal carer exclusion criteria: If the informal carer cannot communicate in English, they will not be eligible to join the trial Nursing home staff exclusion criteria: If the nursing home staff member has delivered Namaste Care to a resident in a nursing home setting which is not involved in this trial Advanced dementia Mental and Behavioural Disorders Unspecified dementia The nursing homes will be randomised to either the intervention arm or the control arm by assigning an ID to each nursing homes and randomly selecting each ID. The random allocation will be carried out by a statistician not otherwise involved in the trial. Namaste Care is a structured care programme and is based on both best practice dementia care and best practice end‐of‐life care. Namaste Care is based around sensory experience: music, massage, colour, taste and scents and promotes person‐centred care with adaptations made to the programme to reflect the resident’s ‘life story’. Namaste Care intervention is delivered in a dedicated space up to twice a day with each session lasting 2 hours. The control arm will continue to deliver the normal care provided to the resident living in the care home. The duration of the Namaste Care intervention will be 6 months and the follow‐up for all arms will also be 6 months. This feasibility trial will consider two contender primary outcomes for a full trial: 1. Quality of dying (dementia), measured using CAD‐EOLD at baseline, 2 weeks, 4 weeks, every 4 weeks thereafter for 6 months, 6 months or following death 2. Quality of life of the person with dementia, measured using QUALID at baseline, 2 weeks, 4 weeks, every 4 weeks thereafter for 6 months, 6 months or following death 1. Behaviours measured using Neuropsychiatric Inventory (NPI‐Q) at baseline, 2 and 4 weeks 2. Pain measured using PAIN‐AD at baseline, 2 and 4 weeks 3. Health economics measured using EQ‐5D‐5L at baseline, 2 and 4 weeks 4. Quality of end of life measured using ICECAP‐SCM at baseline, 2 and 4 weeks 5. Capability of older people measured using ICECAP‐O at baseline, 2 and 4 weeks 6. Economic evaluation in an end of life setting, measured using ICECAP‐CPM at baseline, 2 and 4 weeks 7. Agitation measured using Cohen‐Mansfield Agitation Inventory at baseline, 2 and 4 weeks 8. Sleep and activity measured using an actigraph for 4 weeks 9. Resource use (primary and secondary care services) measured at baseline, 2 weeks, 4 weeks, every 4 weeks thereafter for 6 months, 6 months or following death 10. Satisfaction of care from the perspective of a family member, measured using SWC‐EOLD at baseline, 4 weeks, at least 8 weeks after death of the resident 11. Resource use from the perspective of a family member, measured at least 8 weeks after death of the resident 12. Person‐centeredness in the nursing home, measured using Person Centred Assessment Tool pre‐baseline and 6 months thereafter 13. Nursing home readiness for change, assessed using Alberta Context Tool pre‐baseline 14. Nursing homes' readiness for Namaste Care (intervention and control arm), assessed using interview with nursing home manager pre‐baseline 15. Staff turnover and sickness levels data obtained from nursing home manager pre‐baseline and monthly thereafter for 6 months 16. Staff time, equipment and consumables used, identified from an interview with nursing home staff and looking at daily logs completed by nursing home staff