Living and dying with advanced dementia: A prospective cohort study of symptoms, service use and care at the end of life
Publication details: 2017Uniform titles:- Palliative Medicine
| Item type | Home library | Collection | Class number | Status | Date due | Barcode | |
|---|---|---|---|---|---|---|---|
| Book | Ferriman information and Library Service (North Middlesex) Shelves | Staff publications for NMDX | Available |
NMUH Staff Publications
<h4 style="font-size: 13px; margin: 0px 0.25em 0px 0px; text-transform: uppercase; float: left; font-family: arial, helvetica, clean, sans-serif; text-align: left;"><span style="font-size: 10pt;">BACKGROUND:</span></h4><p style="margin: 0px 0px 0.5em; font-size: 1.04em; font-family: arial, helvetica, clean, sans-serif; text-align: left;"><span style="font-size: 10pt;">Increasing number of people are dying with advanced dementia. Comfort and quality of life are key goals of care.</span></p><h4 style="font-size: 13px; margin: 0px 0.25em 0px 0px; text-transform: uppercase; float: left; font-family: arial, helvetica, clean, sans-serif; text-align: left;"><span style="font-size: 10pt;">AIMS:</span></h4><p style="margin: 0px 0px 0.5em; font-size: 1.04em; font-family: arial, helvetica, clean, sans-serif; text-align: left;"><span style="font-size: 10pt;">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.</span></p><h4 style="font-size: 13px; margin: 0px 0.25em 0px 0px; text-transform: uppercase; float: left; font-family: arial, helvetica, clean, sans-serif; text-align: left;"><span style="font-size: 10pt;">DESIGN:</span></h4><p style="margin: 0px 0px 0.5em; font-size: 1.04em; font-family: arial, helvetica, clean, sans-serif; text-align: left;"><span style="font-size: 10pt;">9-month prospective cohort study.</span></p><h4 style="font-size: 13px; margin: 0px 0.25em 0px 0px; text-transform: uppercase; float: left; font-family: arial, helvetica, clean, sans-serif; text-align: left;"><span style="font-size: 10pt;">SETTING AND PARTICIPANTS:</span></h4><p style="margin: 0px 0px 0.5em; font-size: 1.04em; font-family: arial, helvetica, clean, sans-serif; text-align: left;"><span style="font-size: 10pt;">Greater London, England, people with advanced dementia (Functional Assessment Staging Scale 6e and above) from 14 nursing homes or their own homes.</span></p><h4 style="font-size: 13px; margin: 0px 0.25em 0px 0px; text-transform: uppercase; float: left; font-family: arial, helvetica, clean, sans-serif; text-align: left;"><span style="font-size: 10pt;">MAIN OUTCOME MEASURES:</span></h4><p style="margin: 0px 0px 0.5em; font-size: 1.04em; font-family: arial, helvetica, clean, sans-serif; text-align: left;"><span style="font-size: 10pt;">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).</span></p><h4 style="font-size: 13px; margin: 0px 0.25em 0px 0px; text-transform: uppercase; float: left; font-family: arial, helvetica, clean, sans-serif; text-align: left;"><span style="font-size: 10pt;">RESULTS:</span></h4><p style="margin: 0px 0px 0.5em; font-size: 1.04em; font-family: arial, helvetica, clean, sans-serif; text-align: left;"><span style="font-size: 10pt;">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.</span></p><h4 style="font-size: 13px; margin: 0px 0.25em 0px 0px; text-transform: uppercase; float: left; font-family: arial, helvetica, clean, sans-serif; text-align: left;"><span style="font-size: 10pt;">CONCLUSION:</span></h4><p style="margin: 0px 0px 0.5em; font-size: 1.04em; font-family: arial, helvetica, clean, sans-serif; text-align: left;"><span style="font-size: 10pt;">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.</span></p>
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