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Pain in Hospice Patients With Dementia: The Informal Caregiver Experience.

ABSTRACT: At the end of life, patients with dementia often experience high levels of pain due to complex interplay of disease processes and numerous barriers to symptom management. In the hospice setting, informal caregivers play an essential role in pain management. This study describes their experience managing pain in hospice patients with dementia.We conducted a qualitative analysis of audio-recorded interviews with informal caregivers of hospice patients with dementia who had chosen pain as the challenge they wanted to work on within a problem-solving therapy intervention.The thematic analysis of sessions with 51 caregivers identified 4 themes: difficulty in communicating with patients, lack of consistent guidance from health-care professionals, perceived uncertainty about the etiology of pain, and secondary suffering.Our findings indicate the possible need for increased support for caregivers, including educational interventions targeting pain etiology and assessment, and improved communication with health-care professionals.

SUBMITTER: Tarter R

PROVIDER: S-EPMC4982799 | biostudies-literature | 2016 Sep

REPOSITORIES: biostudies-literature

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Pain in Hospice Patients With Dementia: The Informal Caregiver Experience.

Tarter Robin R Demiris George G Pike Kenneth K Washington Karla K Parker Oliver Debra D

American journal of Alzheimer's disease and other dementias 20160614 6

<h4>Introduction</h4>At the end of life, patients with dementia often experience high levels of pain due to complex interplay of disease processes and numerous barriers to symptom management. In the hospice setting, informal caregivers play an essential role in pain management. This study describes their experience managing pain in hospice patients with dementia.<h4>Methods</h4>We conducted a qualitative analysis of audio-recorded interviews with informal caregivers of hospice patients with deme ...[more]

PMID: 27303062

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Project description:BackgroundDementia is a health and care priority globally. Caring for persons with dementia is a challenge and can lead to negative psychological, physiological and financial consequences for informal carers. Advances in technology have the potential to assist persons with dementia and their carers, through assistive technology devices such as electronic medication dispensers, robotic devices trackers and motion detectors. However, little is known about carers' experience and the impact of these technologies on them. This review aims to investigate the outcomes and experience of carers of persons with dementia, who live at home and use assistive technology.MethodsA systematic search in seven databases and manual searches were carried out using pre-defined inclusion and exclusion criteria to identify studies on carers of persons with dementia involving the use of assistive technology. The search identified 56 publications with quantitative, qualitative and mixed-method designs.ResultsThe studies reported positive and negative findings and focused on a wide variety of assistive technology devices. There were large differences in the uses of assistive technology, outcome measures used and the quality of studies. Knowledge and acceptance, competence to use and ethical issues when using assistive technology were themes that emerged from the studies. Carers generally appreciated using assistive technology and their experience of use varied.ConclusionsThe intention of this systematic review is to list and classify the various types of assistive technology used by carers of persons with dementia and explores the positive and negative aspects, knowledge, acceptance and ethical issues in the use of assistive technology by carers of persons with dementia. We recommend the use of a standard and person-centred system of classifying and naming assistive technology devices and systems and for future research efforts in assistive technology to incorporate a family/carer centred model.Systematic review registrationPROSPERO - CRD42017082268 .

Dataset Information

Pain in Hospice Patients With Dementia: The Informal Caregiver Experience.

Publications

Pain in Hospice Patients With Dementia: The Informal Caregiver Experience.

Similar Datasets

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