Level | Time point(s) | Variables/measures |
---|---|---|
Facility | Baseline | Number of beds; high care versus low care; private versus not-for-profit status; organisational affiliation; dementia-specific status; accommodation and amenities; management structure; person-centredness (PCECAT) |
 | Baseline and 3 monthly | Number of new admissions and deaths; number and proportion of residents with dementia and advanced dementia; proportion of residents requiring complex care |
Involvement of GPs and other community services; rates of acute care episodes and length of stay (including ED presentations with admission and actual admission); rates of potentially non-palliative interventions* and intra-venous anti-biotics | ||
Staff profile and turnover (resignations and new staff); resident to staff ratio; use of agency staff; staff training | ||
Accidents/incidents | ||
Resident | Baseline | Age; gender; previous occupation; years of education |
Time since dementia diagnosis; BMI | ||
Length of stay in NH | ||
 | Baseline and 3 monthly | Dementia stage (FAST); performance statues (AKPS); support needed for activities of daily living (BANS); comorbidities and level of care needs (ACFI); food and fluid intake; palliative care phase (PCOC phase) |
Number of visitors and frequency of visits | ||
 | Whole time on study | ED visits and hospitalisations (reason, whether a GP was consulted in decision to hospitalise, length of stay); potentially non-palliative interventions*; goals of care; reports for any RMMRs conducted |
 | Last month of life | Place of death and(if not NH) reason for transfer and who decided; symptoms; formal symptom assessments; management over last 24 h of life (detailed); non-pharmacological management; input from health professionals; medication changes and rationale |
Family | Baseline | Self-reported relationship to resident; age; gender; education; occupation; dependents; frequency/duration of visits; person responsible status** and prior involvement in decision-making |
Staff | Baseline | Self-reported age; gender; qualifications; position; time in position; time in NH care; dementia experience and previous staff training |
 | Baseline and 3 monthly | Knowledge and attitudes towards advanced dementia (qPAD) |