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PriDem: best practice in primary care led dementia support

Not Applicable
Completed
Conditions
Dementia
Nervous System Diseases
Registration Number
ISRCTN11677384
Lead Sponsor
niversity College London
Brief Summary

2023 Protocol article in https://pubmed.ncbi.nlm.nih.gov/37597869/ (added 21/08/2023) 2024 Results article in https://pubmed.ncbi.nlm.nih.gov/38977367/ (added 09/07/2024) 2024 Results article in https://pubmed.ncbi.nlm.nih.gov/39002959/ feasibility and acceptability findings (added 16/07/2024)

Detailed Description

Not available

Recruitment & Eligibility

Status
Completed
Sex
All
Target Recruitment
60
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

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

Study & Design

Study Type
Interventional
Study Design
Not specified
Primary Outcome Measures
NameTimeMethod
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 Outcome Measures
NameTimeMethod
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 <br>2. Service use measured by the Client Service Use Inventory-adapted for PriDem at 0, 4 and 12 months<br>3. Psychopathy in the person living with dementia measured by the Neuro-Psychiatric Inventory at 0, 4 and 12 months<br>4. Carer anxiety and depressions measured by the Hospital Anxiety and depression scale at 0, 4 and 12 months<br>5. Carer quality of life measured by the C-DEMQOL and EQ5D-5L at 0, 4 and 12 months
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