Caring for people with advanced dementia living in nursing homes
- Conditions
- Advanced dementiaMental and Behavioural DisordersUnspecified dementia
- Registration Number
- ISRCTN14948133
- Lead Sponsor
- ancaster University
- Brief Summary
2018 protocol in: https://www.ncbi.nlm.nih.gov/pubmed/30478131 (added 28/10/2019) 2020 results in: https://www.ncbi.nlm.nih.gov/pubmed/31971506 (added 24/01/2020) 2021 serious adverse event reporting procedures in https://pubmed.ncbi.nlm.nih.gov/33472621/ (added 22/01/2021)
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Completed
- Sex
- All
- Target Recruitment
- 328
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.
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
Study & Design
- Study Type
- Interventional
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method <br> This feasibility trial will consider two contender primary outcomes for a full trial:<br> 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<br> 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<br>
- Secondary Outcome Measures
Name Time Method