scholarly journals Supportive care for older people with dementia: socio-organisational implications

2020 ◽  
pp. 1-33
Author(s):  
Francesco Miele ◽  
Federico Neresini ◽  
Giovanni Boniolo ◽  
Omar Paccagnella

Abstract For many years, dementia care has been dominated by the standard medical approach, in which dementia is treated mainly with drugs, such as anti-anxiety, antidepressant and anti-psychotic medications. With the aim of seeking effective treatments for patients with dementia, over the last years, several contributions have criticised the pervasive use of drugs for the management of behavioural and physiological symptoms related to dementia, proposing personalised interventions aimed at supporting patients and their relatives from diagnosis until death. With particular reference to long-term settings, in this work, we aim at understanding the organisational implications of three types of interventions (labelled supportive care interventions – SCIs) that have characterised this shift in dementia care: person-centred, palliative and multi-disciplinary care. Conducted by following the integrative review method, our review underlines how SCIs have controversial consequences on the quality of care, the care-givers’ quality of life and cultural backgrounds. After an in-depth analysis of selected papers, we offer some considerations about the implications of SCIs for long-term care organisations and future research directions.

2017 ◽  
Vol 29 (10) ◽  
pp. 1609-1618 ◽  
Author(s):  
Ana Barbosa ◽  
Kathryn Lord ◽  
Alan Blighe ◽  
Gail Mountain

ABSTRACTBackground:This systematic review identifies and reports the extent and nature of evidence to support the use of Dementia Care Mapping as an intervention in care settings.Methods:The review was limited to studies that used Dementia Care Mapping as an intervention and included outcomes involving either care workers and/or people living with dementia. Searches were conducted in PubMed, Web of Knowledge, CINAHL, PsychINFO, EBSCO, and Scopus and manually from identified articles reference lists. Studies published up to January 2017 were included. Initial screening of identified papers was based on abstracts read by one author; full-text papers were further evaluated by a second author. The quality of the identified papers was assessed independently by two authors using the Cochrane Risk of Bias Tool. A narrative synthesis of quantitative findings was conducted.Results:We identified six papers fulfilling predefined criteria. Studies consist of recent, large scale, good quality trials that had some positive impacts upon care workers’ stress and burnout and benefit people with dementia in terms of agitated behaviors, neuropsychiatric symptoms, falls, and quality of life.Conclusion:Available research provides preliminary evidence that Dementia Care Mapping may benefit care workers and people living with dementia in care settings. Future research should build on the successful studies to date and use other outcomes to better understand the benefits of this intervention.


Dementia ◽  
2015 ◽  
Vol 16 (6) ◽  
pp. 732-749 ◽  
Author(s):  
Megan E Graham

The movement of people with dementia in long-term care continues to be an issue of concern among clinicians, caregivers and families. This article will examine the social construction “wandering” and its association with pathology, risk discourse and surveillance technologies. Further, the article will explore the recent shift from the term “wanderer” to the phrase “people who like to walk” in person-centred dementia care. Engaging with Ingold’s concept of movement as wayfaring, an alternative becoming-centred understanding of movement and its significance for people with dementia will be presented and illustrated through a case study. The paper concludes that depathologizing movement opens the possibility to see movement in people with dementia as an intention to be alive and to grow, rather than as a product of disease and deterioration. Suggestions for future research and implications for care interventions are discussed.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Julian Hirt ◽  
Melanie Karrer ◽  
Laura Adlbrecht ◽  
Susi Saxer ◽  
Adelheid Zeller

Abstract Background To support the implementation of nurse-led interventions in long-term dementia care, in-depth knowledge of specific supporting factors and barriers is required. Conditions and structures of caring for people with dementia differ widely, depending on the country and the care context. Our study aimed to describe the experiences and opinions of nursing experts and managers with regard to facilitators and barriers to the implementation of nurse-led interventions in long-term dementia care. Methods We conducted a qualitative descriptive study using individual interviews based on qualitative vignettes as a useful stimulus to generate narrations allowing to study peoples’ perceptions and beliefs. The study took place in nursing homes in the German-speaking part of Switzerland and in the Principality of Liechtenstein using purposive sampling. We intended to conduct the interviews face-to-face in a quiet room according to the participant’s choice. However, due to the lockdown of nursing homes during the COVID-19 pandemic in spring 2020, we performed interviews face-to-face and by video. We analysed data thematically following Braun and Clarke to achieve a detailed, nuanced description. To verify our interpretation and to ensure congruence with participants’ perspectives, we conducted member checks. The Standards for Reporting Qualitative Research (SRQR) served to structure our manuscript. Results Six dyads of nursing home managers and nursing experts from six nursing homes took part in our study (n = 12). Our thematic analysis yielded seven themes reflecting facilitators and barriers to implementing nurse-led interventions in long-term dementia care: «A common attitude and cohesion within the organization», «Commitment on several levels», «A needs-oriented implementation», «The effect and the public perception of the intervention», «A structured and guided implementation process», «Supporting knowledge and competencies», as well as «Resources for implementing the intervention». Conclusions To support the implementation of nurse-led interventions in long-term dementia care, active commitment-building seems essential. It is necessary that the value of the intervention is perceptible.Commitment-building is the precondition to reach the persons involved, such as nursing home managers, nursing staff, residents and relatives. Furthermore, nurses should precisely inform about the intervention. It is necessary that the value of the intervention is perceptible. In addition, nurses should adjust the interventions to the situational needs of people with dementia, thus. Therefore, it is important to support dementia-specific competencies in long-term care. Findings indicate that the barrier is determined by the intervention and its implementation – and not by the behaviour of the person with dementia.


2021 ◽  
Author(s):  
Yang-Hao Ou ◽  
Ming-Che Chang ◽  
Wen-Fu Wang ◽  
Kai-Ming Jhang

Abstract Background: There is an increasing awareness of caregiver's burden, especially in those caring for people with dementia. The caregiver burden has been studied extensively in Western countries; however, the interpretation of the results and replication of the intervention may deem unfit in the Chinese culture. Therefore, this study identifies the change in caregiver burden by interventional methods under current Taiwan's long-term care Act 2.0.Method: A total of 2,598 newly diagnosed dementia outpatients was evaluated by the Changhua Christian Hospital dementia care team. Eighty patients utilize one of the three care resources, including community-based services (n = 33), home-based services (n = 19), or taking care by foreign caregivers (n = 28). Participants in the control group were selected by matching their global CDR score, gender, age, and caregivers' age with a 1:4 ratio. All caregivers completed the Zarit Burden Interview (ZBI) questionnaires before and six months after utilizing the care resources. Results: The home-based and the foreign caregiver groups have the highest baseline ZBI scores with 37.63±16.14 and 36.57±17.14, respectively. The second ZBI score was assessed about six months after the baseline showing that the home-based group remained the highest caregiver burden (ZBI = 31.74±12.23) and the foreign caregiver group showed the lowest burden (ZBI = 25.68±12.09). The mean difference in the ZBI score confirmed that the foreign caregiver group had the most improvement, averaging a decrease of 17.99±31.08 points (adjust observation time). A linear regression model showed that home-based care and foreign caregiver contributes the most reduction in caregiver burden (-11.83 and -19,07 ZBI scores, respectively).Conclusion: Caring for people with dementia includes caring for their caregivers. Dementia care team should provide proper social resources, which are crucial in the alleviation of caregiver burden.


2015 ◽  
Vol 27 (10) ◽  
pp. 1739-1747 ◽  
Author(s):  
Elizabeth Beattie ◽  
Maria O’Reilly ◽  
Wendy Moyle ◽  
Lynn Chenoweth ◽  
Deirdre Fetherstonhaugh ◽  
...  

ABSTRACTBackground:Dementia is a chronic illness without cure or effective treatment, which results in declining mental and physical function and assistance from others to manage activities of daily living. Many people with dementia live in long term care facilities, yet research into their quality of life (QoL) was rare until the last decade. Previous studies failed to incorporate important variables related to the facility and care provision or to look closely at the daily lives of residents. This paper presents a protocol for a comprehensive, multi-perspective assessment of QoL of residents with dementia living in long term care in Australia. A secondary aim is investigating the effectiveness of self-report instruments for measuring QoL.Methods:The study utilizes a descriptive, mixed methods design to examine how facility, care staff, and resident factors impact QoL. Over 500 residents with dementia from a stratified, random sample of 53 facilities are being recruited. A sub-sample of 12 residents is also taking part in qualitative interviews and observations.Conclusions:This national study will provide a broad understanding of factors underlying QoL for residents with dementia in long term care. The present study uses a similar methodology to the US-based Collaborative Studies of Long Term Care (CS-LTC) Dementia Care Study, applying it to the Australian setting.


Author(s):  
Andrea Wilkinson ◽  
Marc Kanik ◽  
Judy O’Neill ◽  
Vishuda Charoenkitkarn ◽  
Mark Chignell

Many people living with dementia are under-stimulated and socially isolated. While there has been an increase in activities and programming based on recreational therapy and music therapy, such programs can cover only a fraction of the day for people with dementia and are resource demanding to execute. The result is that many people with dementia, who are institutionalized, are staying most of the day either in their rooms, sitting in communal areas, or wandering the hallways. A related problem is that people with dementia often have difficulty with social interactions and may become anxious or aggressive around people they do not recognize, or in situations they do not understand. Resulting responsive behaviours (e.g., hitting, screaming) may lead to overmedication and poor quality of life. Ambient Activity Technology (AAT) is a wall-mounted interactive tool designed for people with dementia. The AAT unit is available in the environment for easy access, and have been designed to augment existing programming and activities by providing self-accessed, engaging and personalized interactions at any time (24-hours per day, 7 days/week). AATs have been designed to reduce distress, in residents and caregivers, by substituting responsive behaviours and purposelessness with active and meaningful activities, distractions, and appropriate interventions. This paper describes the motivation behind the design and development of the AAT. The paper ends with a description of our summative evaluation research, which is currently in progress at several long-term care facilities in Ontario, Canada.


2019 ◽  
Vol 12 (5) ◽  
pp. e229048 ◽  
Author(s):  
Mark McLean Carter ◽  
Angelina Wei ◽  
Xinlei Li

More than 90% of people with dementia experience neuropsychiatric symptoms which are often distressing and can result in early institutionalisation, diminished quality of life, increased frequency of emergency department visits along with stress and ill-health in caregivers. Non-pharmacological interventions are recommended as first-line treatment for neuropsychiatric symptoms, instead of medications such as atypical antipsychotics which have significant side effects. Most systematic reviews of non-pharmacological interventions for neuropsychiatric symptoms of dementia focus on patients in long-term care facilities and there are a limited number of research studies assessing the use of non-pharmacological interventions for patient’s living at home. In this case report, we discuss an elderly man with dementia whose cognitive symptoms were accompanied by significant neuropsychiatric symptoms of suspicion, delusions, agitation and aggression. We describe how a programme of individualised, non-pharmacological interventions was associated with an improvement in neuropsychiatric symptoms within 3 months.


2014 ◽  
Vol 15 (3) ◽  
pp. B3
Author(s):  
Rebecca S. King-Tucker ◽  
Rebecca S. King-Tucker ◽  
Maria Knupp ◽  
Terry Edwards ◽  
Elizabeth Walters

2016 ◽  
Vol 38 (1) ◽  
pp. 192-211
Author(s):  
ESTER RISCO ◽  
ESTHER CABRERA ◽  
M. CARME ALVIRA ◽  
MARTA FARRÉ ◽  
SUSANA MIGUEL ◽  
...  

ABSTRACTRisk factors associated with admission of people with dementia to long-term care institutions need to be identified to support health-care professionals in dementia care at home. An explorative study, combining quantitative and qualitative data collection methods, was performed in people with dementia in Spain. The sample, consisting of people with dementia receiving formal care from health-care professionals but at risk of institutionalisation, and their informal care-givers; and people with dementia recently admitted to a long-term care institution, and their informal care-givers, was interviewed between November 2010 and April 2012. Perceived reasons for admission were determined through an open-ended question put to both groups. Presumed risk factors were collected with validated questionnaires and analysed using bivariate analysis. A total of 287 people with dementia and informal care-givers were studied. Reasons given by the institutionalised group were mostly related to the level of dependency of the person with dementia. People recently admitted to a long-term care institution had more cognitive impairment, a greater degree of dependency and poorer quality of life than those still living at home. Home-care services in Spain need to develop or improve interventions based on the risk factors identified in this study: informal care-giver profile, high cognitive impairment, high level of dependency and the poor quality of life of the person with dementia.


2017 ◽  
Vol 18 (1) ◽  
pp. 44-57 ◽  
Author(s):  
Heehyul Moon ◽  
Peggye Dilworth-Anderson ◽  
Johannes Gräske

Purpose The purpose of this paper is to review and synthesize the research literature on the quality of life (QoL) of both caregivers (CGs) and care recipients (CRs) with dementia after admission to long-term care facilities. Design/methodology/approach Four databases – AgeLine, Medline, EBSCO, and PyscINFO – were searched and the relevant literature from 2002 onwards was reviewed. Findings The review of 12 studies (five studies, including only family CGs; six studies including residents; one study including both family CGs and CRs) reveals a discrepancy regarding the effects of institutionalization on the CRs’ and CGs’ QoL. Among seven studies on CRs’ QoL change, some reviewed studies found a significant decline in CRs’ QoL after placement with others showing that CRs’ QoL was improved or stable. While some reports indicated that some family CGs benefited from placement, others showed that CGs merely maintained their QoL. However, family CGs in the reviewed studies were more likely to report improved QoL than were their CRs after institutionalization. Research limitations/implications The authors recommend that future studies should focus on understanding the individual’s adaptation to placement, dyadic changes in QoL (including mediators/moderators). They emphasize the need for a comprehensive longitudinal study with more than one wave and includes diverse groups including racial/ethnic minority CGs and CRs. Originality/value This study reviewed and synthesized the research literature on the QoL of both caregiver and the people with dementia they cared for after those they cared for were admitted to long-term care facilities. The conclusions drawn about influences on QoL provide guidance for identifying best practices and research.


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