Dementia Mental and Behavioural Disorders Dementia
Conditions
Interventions
The ANGELA Project uses a mix of qualitative and quantitative methods and consists of two work-streams:
Work-Stream 1 Improving the accuracy of young onset dementia diagnosis:
Sponsors
University College London
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: 1. People of any gender diagnosed with dementia before their 65th birthday 2. Diagnosed with dementia of recognised subtype as defined by the Diagnostic and Statistical Manual of Mental Disorders, fifth edition (2013) and internationally accepted criteria for subtype diagnoses 3. People of any gender and age who are primary carers of younger people living with dementia or other family members / supporters who are affected by the diagnosis of young onset dementia
Exclusion criteria
Exclusion criteria: 1. Dementia caused by HIV 2. Traumatic brain injury 3. Down’s syndrome 4. Huntington’s chorea 5. Alcohol-related dementia
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Work-stream 1, phase 1: Consensus on quality indicators that screen for typical causes of cognitive and behavioural dysfunction and a rational approach to additional testing that is based on selected features of the history and examination, further taking into account the needs of younger people with dementia and their supporters during assessment and diagnosis. Work-stream 1, phase 2: Percentage compliance for each set of case notes with a 'quality indicators' scoring template (reviewing patient notes via a case note audit). Work-stream 2, phase 1: Service use section of the ‘Improving Support and Service Use Survey 1. The service use and satisfaction data (modified version of the Client Service Receipt Inventory) is assessed descriptively. Variability in access and comparisons between service types (Neurology-led services, Older People’s Mental Health Services, Young Onset Dementia-specific services) and geographically are explored to determine service use patterns. 2. The extent and cost of formal care for younger people with dementia will be calculated, if data allow, using validated national tariffs. Informal caring will be costed using a replacement cost approach. Using regression modelling, associations will be explored between service use and satisfaction (dependent variables) and service model, dementia diagnosis and severity (mild, moderate, severe), and informal caring, controlling for background differences between participants. Improving Support section of the ‘Improving Support and Service Use Survey’ 1. Positive examples of post-diagnostic support, advice, information, services or interactions are measured using open-text responses from the Internet and paper surveys, transcribed telephone interviews and focus groups. Each example will be separately tagged and coded according to types that will be decided t | — |
Secondary
| Measure | Time frame |
|---|---|
| There are no secondary outcome measures. | — |
Countries
England, United Kingdom
Contacts
Public ContactJanet Carter
Outcome results
None listed