Dementia Mental and Behavioural Disorders
Conditions
Interventions
STUDY DESIGN:
Our study design follows the Medical Research Council Framework for Developing and Evaluating Complex Interventions. We will also adapt this for methods of evaluation in palliative and e
Sponsors
University College London
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: Person with dementia: 1. 18 years and older 2. All genders 3. Diagnosis or symptoms suggestive of dementia/cognitive impairment as a result of dementia in medical or care home records (any type/any severity) 4. Permanently resident in participating care home OR 5. New referral to Primary Care Network (PCN) team Carer of person with dementia: 1. 18 years and older 2. All genders 3. Capacity to consent 4. Able to read and write in English 5. Identifies as family/friend carer of PWD 6. Minimum of fortnightly contact with PWD (by phone, in person) Health and social care professionals: 1. All permanent care home staff involved in providing direct resident care 2. Care home managers 3. Bank and temporary staff care home staff 1. Those health/social care professionals with participating people with dementia on their active caseloads, and involved in delivery or using the EMBED-Care Framework 2. Primary/community health/social care professionals working with participating care homes and involved in the delivery or using the EMBED-Care Framework in conjunction with the care home staff
Exclusion criteria
Exclusion criteria: Person with dementia: 1. Under 18 years of age 2. No cognitive impairment that is likely related to dementia 3. Those in care homes who are not permanently resident e.g. in respite care Carer of person with dementia: 1. Under 18 years of age 2. Less than two-weekly phone or in-person contact with person with dementia 3. Lacks the capacity to consent 4. Unable to read/write in English Health and social care professionals: 1. Those care home staff not in a managerial position or not involved in direct resident care 2. Those with no active involvement in the care of participating people with dementia
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Candidate outcome measures for people with dementia: 1. Quality of life will be measured using the EQ-5D-5L and proxy reported EQ-5D-5L at baseline, week 4, week 8 and week 12 2. Symptoms will be measured using the Edmonton Symptom Assessment Scale and the proxy-reported Edmonton Symptom Assessment Scale at baseline, week 4, week 8 and week 12 3. Agitation will be measured using the proxy-reported Neuropsychiatric Inventory - agitation subscale at baseline, week 4, week 8 and week 12 Candidate outcome measures for family carers: 1. Direct impact on caring will be measured using the Scales Measuring the Impact of Dementia on Carers - Direct Impact on Caring at baseline, week 4, week 8 and week 12 2. Carer support and information needs will be measured using the Scales Measuring the Impact on Carers - Support and Information at baseline, week 4, week 8 and week 12 3. Carer distress will be measured using the Kessler Psychological Distress Scale at baseline, week 4, week 8 and week 12 4. Carer decision making will be measured using the Decisional Conflict Scale at baseline, week 4, week 8 and week 12 5. Carer experience of care will be measured using HowRWe measured at baseline, week 4, week 8 and week 12 | — |
Secondary
| Measure | Time frame |
|---|---|
| There are no secondary outcome measures | — |
Countries
England, United Kingdom
Outcome results
None listed