Dementia Mental and Behavioural Disorders Unspecified dementia
Conditions
Interventions
Work stream 1 (systematic review) and work stream 2 (data set analysis) do not involve any research participants. Work stream 3 (cohort study) involves research participants and is outlined in detail
Sponsors
University College London
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: Workstreams 1 and 2 do not include any research participants Workstream 3: cohort study People living with dementia must: 1. Be aged =65 years 2. Have a recorded diagnosis of dementia in their medical records 3. Have experienced at least one unplanned medical admission to hospital in the last 6 months at the point of identification by clinical staff 4. Be able to provide written informed consent or has a personal or nominated consultee who is able to provide a declaration for the person to be included in the study Family carers: 1. Are able to provide informed written consent 2. Are providing (unpaid) care to a person living with dementia who is taking part in the study The researchers will add a substantial amendment for the principal inclusion criteria for workstreams 4, 5 and 6 as these will be informed by workstreams 1, 2 and 3.
Exclusion criteria
Exclusion criteria: Workstreams 1 and 2 do not include any research participants Workstream 3: cohort study People living with dementia who: 1. Do not have a diagnosis of dementia or are undergoing tests for cognitive impairment at the time of screening 2. Are unable to respond to study assessments and do not have a proxy respondent 3. Indicate either verbally or non-verbally that they do not wish to participate 4. Are unable to communicate in English (i.e., require an interpreter for medical appointments) 5. Are moribund, comatose or those with medical concerns that the clinical staff feel should preclude them being approached (including PwD who are in the last few days of life and are not likely to survive to discharge) Family carers who: 1. Are aged =18 years 2. Are unable to communicate in English (i.e., require an interpreter for medical appointments) 3. Do not have the capacity to provide informed written consent The researchers will add a substantial amendment for the principal exclusion criteria for workstreams 4, 5 and 6 as these will be informed by workstreams 1, 2 and 3
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| 1. WS3: Care transitions are measured by recording any care transitions in the previous two months on a form devised by the study team at baseline, 2, 4, 6, 8,10,12 months and post-death (this information will be provided by the participant, either a person living with dementia with capacity or a family carer) 2. WS5: Symptoms are measured by the Integrated Palliative care Outcome Scale for Dementia (IPOS-Dem) at baseline, 2, 4, 6, 8, 10 and 12 months | — |
Secondary
| Measure | Time frame |
|---|---|
| Person with dementia: 1. Demographic information will be collected at baseline 2. Dementia Severity is measured using the Clinical Dementia Rating Scale (CDR) at baseline 3. Preferences for End of life and goals of care are measured using EOLC preferences at baseline 4. Co-morbidities are measured using Charlson co-morbidity Index (CCI) at baseline 5. Religious and spiritual needs are measured using the Duke University Religion Index (DUREL) at baseline 6. Experience of COVID-19 are measured using COVID-19 questions devised by the study team at baseline, 2, 4, 6, 8, 10 and 12 months 7. Medication is measured by medication use at baseline, 2, 4, 6, 8, 10, 12 months and post-death 8. Strategies used to address needs are measured using Addressing unmet needs at baseline, 2, 4, 6, 8, 10 and 12 months 9. Behavioural and Psychological Symptoms in Dementia (BPSD) are measured using The Neuropsychiatric Inventory Questionnaire (NPI-Q) at baseline, 2, 4, 6, 8, 10 and 12 months 10. Resource use and care transitions are measured using Client Services Receipt Inventory (CSRI) at baseline 4, 8 and 12 months 11. Quality of life is measured using Quality of Life for people with dementia (DEMQOL/DEMQOL-Proxy) at baseline, 2, 4, 6, 8, 10 and 12 months 12. Quality of life is measured using EQ-5D-5L at baseline, 2, 4, 6, 8, 10 and 12 months 13. Pain is measured using Pain Assessment in Advanced Dementia (PAINAD) at baseline 4, 8 and 12 months 14. Frailty is measured using FRAIL at baseline 4, 8 and 12 months 15. Symptom Management is measured using Symptom Management at the End of Life in Dementia Scale (SM-EOLD) at baseline, 2, 4, 6, 8, 10 and 12 months 16. Unmet needs are measured using Camberwell Assessment of Need for the Elderly (CANE) at baseline 4,8 and 12 months 17. Integrated and continuity of care at measured by Walker’s measure of integrated care at baseline and 12 months 18. Place of death, cause of death are measured by Information about death at post-death 19. Quality of | — |
Countries
England, United Kingdom
Outcome results
None listed