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How Can Autonomy Be Maintained and Informal Care Improved for People With Dementia Living in Residential Care Facilities: A Systematic Literature Review.

ABSTRACT: BACKGROUND AND OBJECTIVES:For people with dementia living in residential care facilities, maintaining autonomy and receiving informal care are important. The objective of this review is to understand how caregiving approaches and physical environment, including technologies contribute to the maintenance of autonomy and informal care provision for this population. RESEARCH DESIGN AND METHODS:A literature review of peer-reviewed articles published between January 1995 and July 2017 was performed. Realist logic of analysis was used, involving context, mechanism and outcome configurations. RESULTS:Forty-nine articles were included. The improvement of the relationship between residents and formal/informal caregivers is important. This increases the knowledge (sharing) about the resident and contributes to their autonomy. A social, flexible, and welcoming attitude of the formal caregiver improves the provision of informal care. Specially designed spaces, for instance, therapeutic gardens, create activities for residents that remind them of themselves and contribute to their autonomy. Use of technologies reduces caregiver's time for primary tasks and therefore enables secondary tasks such as interaction with the residents. DISCUSSION AND IMPLICATIONS:The results revealed how residential care facilities could maintain autonomy of their residents and improve informal care delivery using caregiving approaches and the physical environment including technologies. The results are supporting toward each other in maintaining autonomy and also helped in enhancing informal care provision. For residential care facilities that want to maintain the autonomy of their residents and improve informal care delivery, it is important to pay attention to all aspects of living in a residential care facility.

SUBMITTER: Boumans J

PROVIDER: S-EPMC6858830 | biostudies-literature | 2019 Nov

REPOSITORIES: biostudies-literature

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Publications

How Can Autonomy Be Maintained and Informal Care Improved for People With Dementia Living in Residential Care Facilities: A Systematic Literature Review.

Boumans Jogé J van Boekel Leonieke C LC Baan Caroline A CA Luijkx Katrien G KG

The Gerontologist 20191101 6

<h4>Background and objectives</h4>For people with dementia living in residential care facilities, maintaining autonomy and receiving informal care are important. The objective of this review is to understand how caregiving approaches and physical environment, including technologies contribute to the maintenance of autonomy and informal care provision for this population.<h4>Research design and methods</h4>A literature review of peer-reviewed articles published between January 1995 and July 2017 ...[more]

PMID: 30239712

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Project description:INTRODUCTION:The aged population is increasing rapidly across the world and this is expected to continue. People living in residential aged care facilities (RACFs) represent amongst the sickest and frailest cohort of the aged population, with a high prevalence of chronic conditions and complex comorbidities. Given the vulnerability of RACF residents and the demands on the system, there is a need to determine the extent that care is delivered in line with best practice ('appropriate care') in RACFs. There is also a recognition that systems should provide care that optimises quality of life (QoL), which includes support for physical and psychological well-being, independence, social relationships, personal beliefs and a caring external environment. The aims of CareTrack Aged are to develop sets of indicators for appropriate care and processes of care for commonly managed conditions, and then assess the appropriateness of care delivered and QoL of residents in RACFs in Australia. METHODS AND ANALYSIS:We will extract recommendations from clinical practice guidelines and, using expert review, convert these into sets of indicators for 15 common conditions and processes of care for people living in RACFs. We will recruit RACFs in three Australian states, and residents within these RACFs, using a stratified multistage sampling method. Experienced nurses, trained in the CareTrack Aged methods ('surveyors'), will review care records of recruited residents within a 1-month period in 2019 and 2020, and assess the care documented against the indicators of appropriate care. Surveyors will concurrently assess residents' QoL using validated questionnaires. ETHICS AND DISSEMINATION:The study has been reviewed and approved by the Human Research Ethics Committee of Macquarie University (5201800386). The research findings will be published in international and national journals and disseminated through conferences and presentations to interested stakeholder groups, including consumers, national agencies, healthcare professionals, policymakers and researchers.

Project description:IntroductionPeople living with dementia in care homes can benefit from palliative approaches to care; however, not all will require specialist palliative care. The generalist aged care workforce is well placed to provide most of this care with adequate training and support systems in place, but little is known about their experiences.ObjectiveTo describe staff perspectives on providing quality end-of-life care for people living with dementia in residential care and their families.MethodsFocus groups and semi-structured interviews were conducted with residential aged care managerial and frontline staff in Australia who were caring for residents living with dementia and end-of life needs. A comprehensive, then snowballing sampling strategy was used in participating care homes. Transcripts were analyzed using reflexive thematic analysis.ResultsFifteen semi-structured interviews and six focus groups were undertaken with 56 participants across 14 sites across two Australian states. Five themes were identified: putting the resident at the center (creating homes not hospitals, knowing the individual, a case management approach); articulating goals to grant wishes (initiating the conversation, broadening death literacy, avoiding hospitalization); a collective call to action (staffing the home, recognizing deterioration and escalating issues, communication channels and engaging GPs, managing medications, psychosocial supports); educating to empower staff (governance and guidance, mentoring juniors, self-care); and facilitating family acceptance (setting expectations, partnering in care, access at all hours).DiscussionAged care staff are committed to providing person-centered palliative and end-of-life care for people living with dementia, recognizing the intrinsic value of each resident, regardless of their declining state. Frontline and managerial staff consider advance care planning, collectively working as part of a multidisciplinary team, access to targeted palliative and end-of-life education and training, and engaging families as key priorities to providing high quality care in care homes.

Dataset Information

How Can Autonomy Be Maintained and Informal Care Improved for People With Dementia Living in Residential Care Facilities: A Systematic Literature Review.

Publications

How Can Autonomy Be Maintained and Informal Care Improved for People With Dementia Living in Residential Care Facilities: A Systematic Literature Review.

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