Living and dying with advanced dementia: A prospective cohort study of symptoms, service use and care at the end of life
| Autor: | Louise Jones, Victoria Vickerstaff, Sarah Davis, Bridget Candy, Kirsten Moore, Irwin Nazareth, Elizabeth L Sampson, Jane Harrington, Rumana Z Omar, Gerard Leavey, Anna Gola, Nuriye Kupeli, Michael King |
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| Rok vydání: | 2017 |
| Předmět: |
Male
medicine.medical_specialty Palliative care Psychological intervention resource allocation Cohort Studies primary healthcare 03 medical and health sciences 0302 clinical medicine Quality of life (healthcare) Pain assessment Surveys and Questionnaires medicine Humans Dementia pain Prospective Studies 030212 general & internal medicine Psychiatry Curative care Aged 80 and over Geriatrics Terminal Care palliative care business.industry Do not resuscitate residential facilities Original Articles General Medicine Patient Acceptance of Health Care medicine.disease Anesthesiology and Pain Medicine psychomotor agitation quality of healthcare England Family medicine Quality of Life Female Symptom Assessment behavioural symptoms business 030217 neurology & neurosurgery |
| Zdroj: | Palliative Medicine |
| ISSN: | 1477-030X 0269-2163 |
| DOI: | 10.1177/0269216317726443 |
| Popis: | Background: Increasing number of people are dying with advanced dementia. Comfort and quality of life are key goals of care. Aims: To describe (1) physical and psychological symptoms, (2) health and social care service utilisation and (3) care at end of life in people with advanced dementia. Design: 9-month prospective cohort study. Setting and participants: Greater London, England, people with advanced dementia (Functional Assessment Staging Scale 6e and above) from 14 nursing homes or their own homes. Main outcome measures: At study entry and monthly: prescriptions, Charlson Comorbidity Index, pressure sore risk/severity (Waterlow Scale/Stirling Scale, respectively), acute medical events, pain (Pain Assessment in Advanced Dementia), neuropsychiatric symptoms (Neuropsychiatric Inventory), quality of life (Quality of Life in Late-Stage Dementia Scale), resource use (Resource Utilization in Dementia Questionnaire and Client Services Receipt Inventory), presence/type of advance care plans, interventions, mortality, place of death and comfort (Symptom Management at End of Life in Dementia Scale). Results: Of 159 potential participants, 85 were recruited (62% alive at end of follow-up). Pain (11% at rest, 61% on movement) and significant agitation (54%) were common and persistent. Aspiration, dyspnoea, septicaemia and pneumonia were more frequent in those who died. In total, 76% had ‘do not resuscitate’ statements, less than 40% advance care plans. Most received primary care visits, there was little input from geriatrics or mental health but contact with emergency paramedics was common. Conclusion: People with advanced dementia lived with distressing symptoms. Service provision was not tailored to their needs. Longitudinal multidisciplinary input could optimise symptom control and quality of life. |
| Databáze: | OpenAIRE |
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