Dementia Nervous System Diseases
Conditions
Interventions
In order to test the intervention, primary care networks will be provided with a Clinical Dementia Expert (employed by University College London) who will work with the local team to formalise primary
Sponsors
University College London
Eligibility
Sex/Gender
All
Age
18 Years to 120 Years
Inclusion criteria
Inclusion criteria: People living with dementia (PLWD): 1. Age 18+ years 2. Diagnosis of dementia recorded in patient medical record 3. Registered with a participating practice 4. Community-dwelling 5. Capacity to consent to the study. Where a patient does not have capacity to content, a consultee opinion will be sought Carers: 1. Age 18+ years 2. Identified as a carer of a PLWD. A ‘carer’ is someone who gives care and support to their partner, child, friend, or another close relative. 'Care and support' can mean practical help or emotional support 3. Willing and able to provide informed consent (and acting as a consultee for the PLWD, if applicable) Professionals: 1. Age 18+ years 2. Identified as working for or with PLWD 3. Willing and able to provide informed consent
Exclusion criteria
Exclusion criteria: People living with dementia (PLWD): 1. Individuals under the age of 18 years 2. Potential participants who are judged as inappropriate for the study by a member of the primary care team (e.g., due to concurrent life events such as bereavement or receiving end of life care) 3. Participants who have an advance statement recorded in their primary care records indicating that they do not wish to take part in research studies 4. People living in a care home Carers: 1. Individuals under the age of 18 years 2. Potential participants who are 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. Participants who are not fluent English speakers will be excluded since they would be unable to complete the standardised outcome measures and are likely to have difficulties in participating in a qualitative interview Professionals: 1. Health care professionals who do not provide post-diagnostic dementia support
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Presence/absence of a personalised care plan: a binary measure of whether or not a recruited person with dementia has a personalised care plan in place, measured at 0 and 12 months | — |
Secondary
| Measure | Time frame |
|---|---|
| 1. Health-related quality of life for the person living with dementia measured by the DEMQOL, EQ5D-5L, DEMQOL-Proxy and EQ5D-5L proxy at 0, 4 and 12 months 2. Service use measured by the Client Service Use Inventory-adapted for PriDem at 0, 4 and 12 months 3. Psychopathy in the person living with dementia measured by the Neuro-Psychiatric Inventory at 0, 4 and 12 months 4. Carer anxiety and depressions measured by the Hospital Anxiety and depression scale at 0, 4 and 12 months 5. Carer quality of life measured by the C-DEMQOL and EQ5D-5L at 0, 4 and 12 months | — |
Countries
England, United Kingdom
Outcome results
None listed