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Living and dying with advanced dementia: A prospective cohort study of symptoms, service use and care at the end of life.

ABSTRACT: 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.

SUBMITTER: Sampson EL

PROVIDER: S-EPMC5987852 | biostudies-literature | 2018 Mar

REPOSITORIES: biostudies-literature

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Living and dying with advanced dementia: A prospective cohort study of symptoms, service use and care at the end of life.

Sampson Elizabeth L EL Candy Bridget B Davis Sarah S Gola Anna Buylova AB Harrington Jane J King Michael M Kupeli Nuriye N Leavey Gerry G Moore Kirsten K Nazareth Irwin I Omar Rumana Z RZ Vickerstaff Victoria V Jones Louise L

Palliative medicine 20170918 3

<h4>Background</h4>Increasing number of people are dying with advanced dementia. Comfort and quality of life are key goals of care.<h4>Aims</h4>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.<h4>Design</h4>9-month prospective cohort study.<h4>Setting and participants</h4>Greater London, England, people with advanced dementia (Functional Assessment Staging Scale 6e and above) from 14 ...[more]

PMID: 28922625

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Project description:BackgroundSeventy percent of people with advanced dementia live and die in care homes. Multisensory approaches, such as Namaste Care, have been developed to improve the quality of life and dying for people with advanced dementia but little is known about effectiveness or optimum delivery. The aim of this review was to develop an explanatory account of how the Namaste Care intervention might work, on what outcomes, and in what circumstances.MethodsThis is a realist review involving scoping of the literature and stakeholder interviews to develop theoretical explanations of how interventions might work, systematic searches of the evidence to test and develop the theories, and their validation with a purposive sample of stakeholders. Twenty stakeholders - user/patient representatives, dementia care providers, care home staff, researchers -took part in interviews and/or workshops.ResultsWe included 85 papers. Eight focused on Namaste Care and the remainder on other types of sensory interventions such as music therapy or massage. We identified three context-mechanism-outcome configurations which together provide an explanatory account of what needs to be in place for Namaste Care to work for people living with advanced dementia. This includes: providing structured access to social and physical stimulation, equipping care home staff to cope effectively with complex behaviours and variable responses, and providing a framework for person-centred care. A key overarching theme concerned the importance of activities that enabled the development of moments of connection for people with advanced dementia.ConclusionsThis realist review provides a coherent account of how Namaste Care, and other multisensory interventions might work. It provides practitioners and researchers with a framework to judge the feasibility and likely success of Namaste Care in long term settings. Key for staff and residents is that the intervention triggers feelings of familiarity, reassurance, engagement and connection.Study registrationThis study is registered as PROSPERO CRD42016047512.

Project description:Background and objectivesPeople living with dementia deserve to experience the benefits of receiving palliative care and end-of-life services and supports, yet they often do not receive this care compared to those with other terminal diseases. People living with dementia in rural areas often face additional challenges to accessing such care. The purpose of this scoping review was to systematically review and synthesize the literature on palliative and end-of-life care for people with dementia living in rural areas, and to identify and describe key findings and gaps in the literature.MethodsA collaborative research team approach was used in an iterative process across all stages of this review. Systematic, comprehensive searches were conducted across ten databases and eight targeted websites for relevant peer-reviewed, original research and other less formal literature, published in English, which yielded a total of 4476 results. After duplicate removal, screening, and review, 24 items were included for synthesis.ResultsAll items were described and illustrated by frequency distribution, findings were grouped thematically, and five key themes emerged, including: 1) Knowledge about dementia, 2) Availability, accessibility, and utilization of palliative and end-of-life care services and supports, 3) Decision-making about care, the value of a person-centered approach and collaborative support, 4) Perspectives on artificial nutrition, hydration, and comfort care, and 5) Quality of life and death. The main gap identified was literature pertaining to rural populations, especially from locations other than the United States. The influence of rurality on relevant findings was mixed across rural-urban comparison studies, as was the effect of sex and gender across the literature.ConclusionsSeveral areas were highlighted including the importance of increasing knowledge about dementia, having early conversations about advanced care and treatment options, providing a person-centered approach, and the potential for using technology to address rural access issues. These findings can be used to inform future research and policy and the development of services, supports, and strategies for rural people living with dementia. Further research is recommended.

Dataset Information

Living and dying with advanced dementia: A prospective cohort study of symptoms, service use and care at the end of life.

Publications

Living and dying with advanced dementia: A prospective cohort study of symptoms, service use and care at the end of life.

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