Advanced neurodegenerative dementia including Alzheimer's disease, Lewy body and vascular or mixed dementia Nervous System Diseases Advanced neurodegenerative dementia
Conditions
Interventions
Intervention group:
A structured nurse-led assessment of patients' physical and mental state with particular attention to pain and other features of advanced dementia such as swallowing and mobility.
Sponsors
University College London (UK)
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: We will recruit patients who have a high six-month mortality risk: 1. Unplanned emergency admission to general hospital ward with treatable acute medical illness 2. Over 70 years of age, either sex 3. Diagnosis of advanced primary degenerative dementia: 3.1. Functional assessment staging (FAST) stage 6e or worse 3.2. Doubly incontinent and needing assistance with all activities of daily living
Exclusion criteria
Exclusion criteria: 1. Imminently dying (prognosis less than 48 hours) 2. Patients without a clearly identified non-statutory carer
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| This is a pilot study and a number of potential outcomes will be explored: Carer related outcomes: 1. Stress and wellbeing-Kessler Distress Scale (KD10) 2. Health status (EQ-5D) 3. Satisfaction with decision-making process: 3.1. Decision Satisfaction Inventory 3.2. Decision Conflicts Scale 4. Satisfaction with care: Satisfaction with End of Life Care in Advanced Dementia Scale 5. Visual Analogue Scale: a standard 10 cm Visual Analogue Scale to measure carer satisfaction with: 5.1. The process of the advanced care planning 5.2. The utility/usefulness of the advance care planning Patient related outcomes: 1. Active interventions: Painful Interventions Scale 2. Other interventions: 2.1. Resuscitation status 2.2. Percutaneous endoscopic gastrostomy (PEG) feeding 2.3. Prescription of neuroleptics 3. Quality of end of life care: 3.1. Prescription of analgesia at time of death 3.2. Use of Liverpool Care Pathway 4. Survival times: time of intervention to time of death System related outcomes: 1. Advanced care planning: 1.1. Numbers choosing to make advanced care plan 1.2. Adherence to advance care plan 2. Use of Gold Standards Framework (GSF): by GP (if practice participating in the GSF programme) 3. Referrals to and input from community palliative care 4. Number of contacts after the intervention, i.e., by telephone between carers and the research nurse 5. Readmission rates for emergency acute admissions 6. Place of death 7. Economic outcomes (Client Service Receipt Inventory [CSRI]) | — |
Secondary
| Measure | Time frame |
|---|---|
| No secondary outcome measures as this is a pilot study, therefore only the establishment of which outcomes are of most utility is being explored. | — |
Countries
United Kingdom
Outcome results
None listed