Specialty: Primary Care, Primary sub-specialty: Dementias and neurodegeneration (DeNDRoN)
Conditions
Interventions
Pilot Trial:
GP practices are allocated to one of two groups, at ratio of 1:1.
Intervention Group :
The intervention is care and support from a Dementi
Sponsors
Northumbria Healthcare NHS Foundation Trust
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: Inclusion Criteria for the Pilot Trial: People With Dementia 1. People on the dementia register who received a diagnosis of dementia in the last two years 2. People who are on both the dementia and palliative care registers 3. People on the dementia register who are considered to be within 12 months of end of life as judged by a member of the clinical care team Carers 1. Main family member of the above participant with dementia 2. Age 18 years or over Key informants Key informants of participating people with dementia will be health or social care participant with dementia and able to report on quality of life, behavioural and psychological symptoms of dementia, symptom management, etc. Inclusion criteria for process evaluation 1. Participants with dementia who have consented to participate in the pilot trial and agreed to contact by the qualitative research team 2. Family members of participants with dementia recruited to the study who have consented to participate in the pilot trial and agreed to contact by the qualitative research team 3. Health and social care professionals linked to intervention sites who provide end of life care to participants with dementia and their families 4. Members of the core intervention team 5. Members of the primary care team most closely involved in screening and study recruitment in control sites.
Exclusion criteria
Exclusion criteria: Patients with Dementia: 1. Under the age of 18 years 2. Judged as inappropriate for the study by a member of the primary care team (e.g. due to concurrent life events such as bereavement) 3. Not fluent English speakers 4. Not consenting to be contacted by the qualitative team during the initial trial consent process (process evaluation only) 5. Lack of capacity to consent (process evaluation) Carers: Not consenting to be contacted by the qualitative team during the initial trial consent process (process evaluation only). Exclusion criteria for process evaluation 1. Participants with dementia and/or family members who do not consent to contact by the qualitative team during the initial pilot trial consent process 2. Potential participants who refuse consent 3. Any individuals under the age of 18 years
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| 1. Recruitment rate is measured using the number of eligible participants who consent to participate in the study by 12 months 2 Retention rate is measured as the number of participants who consent to participate that remain in the study until the end of follow up at 12 months, or until they die (whichever is sooner). 3. Acceptability and engagement with the intervention and trial procedures | — |
Secondary
| Measure | Time frame |
|---|---|
| 1. Health status is measured using EQ-5D-5L questionnaire at baseline, 4, 8 and 12 months, and 2 months after the death of the person with dementia 2. Health status is measured using EQ-5D-5L Proxy questionnaire, completed by family member of key informant at baseline, 4, 8 and 12 months 3. Anxiety and depression in family members is measured using HADS questionnaire at baseline, 4, 8 and 12 months and 2 months after the death of the person with dementia 4. For the participant with dementia, use of health care and personal social services is measured using a modified version of the Client Services Receipt Inventory (CSRI) questionnaire at 4, 8 and 12 months 5. For the participant who is a family member of the person with dementia, use of their own health care and personal social services is measured using a modified version of the Client Services Receipt Inventory (CSRI) questionnaire at 12 months and 2 months after the death of the person with dementia 6. Quality of life in people with advanced dementia is measured using the QUALID questionnaire at baseline, 4, 8 and 12 months 7. Common behavioural disturbances in dementia is measured using the Neuropsychiatric Inventory (NPI) questionnaire at baseline, 4, 8 and 12 months 8. The severity of nursing needs in the person with dementia will be measured using the Bedford Alzheimer Nursing Severity Scale (BANS-S) at baseline, 4, 8 and 12 months 9. Pain in non-communicative patients will be measured using the Pain Assessment in Advanced Dementia (PAINAD) questionnaire at baseline, 4, 8 and 12 months 10. Symptoms and conditions of the person with dementia during the last 7 days of life is measured using the CAD-EOLD questionnaire, completed by a family member 2 months after death 11. Nine end of life symptoms during the previous 90 days will be measured using the Sy | — |
Countries
United Kingdom
Outcome results
None listed