The ‘tipping point’: Exploring the factors associated with entry into residential care for people with dementia in Western Australia

Dementia ◽  
2021 ◽  
pp. 147130122110012
Author(s):  
Thomas McGrath ◽  
Barbara Blundell ◽  
Claire Morrisby
Keyword(s):  
Social Support ◽  
Residential Care ◽  
Western Australia ◽  
Contextual Factors ◽  
Tipping Point ◽  
Care Staff ◽  
Community Research ◽  
Informal Carer ◽  
People With Dementia ◽  
At Home

Background People with dementia usually prefer to live in the community. Research is needed to identify the ‘tipping point’ for residential care entry and to highlight how people with dementia can be supported to remain at home as long as possible. Few previous studies have examined caregivers’ perceptions and explanations for the reasons people with dementia need to enter residential care in Australia. Aim To explore the factors contributing to people with dementia entering residential care in Perth, Western Australia, from the perspectives of informal carers and care staff. Method This phenomenological study used purposive sampling to recruit informal and formal caregivers of people with dementia. Semi-structured in-depth interviews were conducted with 13 family carers and 11 home care staff. Data were thematically analysed to identify individual, carer and contextual factors that impact on residential care entry. Findings The majority of participants identified a combination of factors as the ‘tipping point’ to residential care entry; a few also identified the cause as a sudden event or specific issue. Factors identified included deterioration related to worsening cognition, changed behaviours and a decline in the performance of activities of daily living; co-occurring health conditions; safety concerns; carer no longer able to meet care needs; impact of providing support becoming too much for the informal carer; lack of family or social support and needing assistance from services that were unavailable or inaccessible. Factors assisting people with dementia to remain living at home longer were family and social support, formal services and dog ownership. Conclusion This study identified individual, carer and contextual factors that contribute to people with dementia entering residential care in Australia. The ‘tipping point’ was recognised as when the needs of a person with dementia outweigh the capacity of their informal and formal carers, services and supports to care for them.

scholarly journals Care staff and the creative arts: exploring the context of involving care personnel in arts interventions

2017 ◽  
Vol 29 (12) ◽  
pp. 1979-1991 ◽  
Author(s):  
Emma Broome ◽  
Tom Dening ◽  
Justine Schneider ◽  
Dawn Brooker
Keyword(s):  
Residential Care ◽  
Web Of Science ◽  
Care Staff ◽  
Care Practice ◽  
Search Process ◽  
Creative Arts ◽  
Daily Care ◽  
People With Dementia ◽  
Arts Programs ◽  
Intervention Context

ABSTRACTBackground:Arts-based interventions play an important role in the care of people with dementia. Yet, creative arts are seldom implemented as a tool to enhance the care and wellbeing of people with dementia.Methods:We examined the involvement of care staff in creative arts activities in residential care. Aspects of involvement that appear to influence outcomes in people with dementia were identified and analyzed. A broad systematic literature search of MedLine, EMBASE, PsychInfo, CINAHL, ASSIA, SCOPUS, and Web of Science led to the identification of 14 papers. The studies identified through the search process were examined in terms of intervention, context, mechanism and outcome, and the relationships between these aspects.Results:Training sessions were identified as an opportunity to educate care personnel on useful techniques that are relevant to daily care practice. Evidence from the literature suggests that creative arts programs play a significant role in the way staff and residents interact and as a result influence the care practice of staff. Under certain conditions creative arts programs, that involve and engage staff, facilitate enhanced interactions and improve care strategies, which leads to the recognition and validation of personhood in residents with dementia.Conclusions:These findings provide a basis for illustrating which elements of care staff involvement in creative arts programs could be implemented in residential care contexts in order to have the upmost benefit.

Norway

2019 ◽  
pp. 211-218
Author(s):  
Knut Engedal
Keyword(s):  
Quality Of Life ◽  
Health Services ◽  
Welfare State ◽  
Family Caregivers ◽  
Residential Care ◽  
Healthcare Professionals ◽  
Tax System ◽  
People With Dementia ◽  
At Home

Norway has 5 million inhabitants, of whom 200,000 are aged above 80 years. The country is a welfare state, with a tax system covering most health services for its citizens. It is estimated that 78,000 people in Norway suffer from dementia, of whom 60% live at home and the remainder in residential care. In 2007, the first National Dementia Plan was launched (2007–2015), and the second in 2016 (2016–2020). The main goals of the two Plans are to develop services across the country to improve the care and quality of life for all people with dementia and their family caregivers, as well as increase the knowledge of dementia among healthcare professionals. In addition, the Plans also aim to improve awareness of dementia in society as a whole and to develop and implement measures to help create a more dementia-friendly society.

The Development of the strain in dementia care scale (SDCS)

2015 ◽  
Vol 27 (12) ◽  
pp. 2017-2030 ◽  
Author(s):  
Anna-Karin Edberg ◽  
Katrina Anderson ◽  
Anneli Orrung Wallin ◽  
Mike Bird
Keyword(s):  
Factor Analysis ◽  
Residential Care ◽  
Outcome Measurement ◽  
Well Being ◽  
Critical Issue ◽  
Dementia Care ◽  
Residential Facilities ◽  
Care Staff ◽  
People With Dementia ◽  
Item Scale

ABSTRACTBackground:Though many staff gain satisfaction from working with people with dementia in residential facilities, they also experience significant stress. This is a serious issue because this in turn can affect the quality of care. There is, however, a lack of instruments to measure staff strain in the dementia-specific residential care environment, and the aim of this study, accordingly, was to develop the “Strain in Dementia Care Scale.”Methods:The instrument was developed in three steps. In the first step, items were derived from six focus group discussions with 35 nurses in the United Kingdom, Australia, and Sweden concerning their experience of strain. In the second step, a preliminary 64-item scale was distributed to 927 dementia care staff in Australia and Sweden, which, based on exploratory factor analysis, resulted in a 29-item scale. In the final step, the 29-item scale was distributed to a new sample of 346 staff in Sweden, and the results were subjected to confirmatory factor analysis.Results:The final scale comprised the following 27 items producing a five-factor solution: Frustrated empathy; difficulties understanding and interpreting; balancing competing needs; balancing emotional involvement; and lack of recognition.Conclusions:The scale can be used (a) as an outcome measurement in residential care intervention studies; (b) to help residential facilities identify interventions needed to improve staff well-being, and, by extension, those they care for; and (c) to generally make more salient the critical issue of staff strain and the importance of ameliorating it.

scholarly journals The effective ingredients of social support at home for people with dementia: a literature review

2017 ◽  
Vol 25 (2) ◽  
pp. 110-119
Author(s):  
Elaine Argyle ◽  
Tony Kelly ◽  
John Gladman ◽  
Rob Jones
Keyword(s):  
Social Support ◽  
Social Care ◽  
Good Practice ◽  
Relevant Literature ◽  
Optimal Timing ◽  
Content Type ◽  
People With Dementia ◽  
Health And Social Care ◽  
Search And Selection ◽  
At Home

Purpose Recent years have seen an increasing reliance on social support at home for people with dementia and the advocacy of a person centred and integrated approach in its provision. However, little is known about the effective ingredients of this support and how they differ from more generic or health-based services. The purpose of this paper is to explore the existing evidence base. Design/methodology/approach A review of relevant literature was carried out, combining a systematic search and selection of articles with a narrative analysis. Findings The review identified 14 relevant studies of varying research designs which yielded conflicting findings with regard to the optimal timing of interventions and their overall impact. This highlights the problems of review and generalisability when attempting to compare findings of research in this area. This was exacerbated by the blurred divide between health and social care and ambiguities in the meaning of the latter. Research limitations/implications This methodological heterogeneity demonstrates the need for consistency in research approaches if comparisons are to be made. Further questions include the precise components that distinguish social care from health care, the optimal timing for the introduction of this care and whether adherence to good practice in this area can be linked to cost effectiveness. Originality/value The review identifies relevant issues in need of further investigation and tentative themes emerging from the literature which suggest the utility of an adequately resourced, integrated and responsive approach to intervention.

scholarly journals 430 - The Puzzled and Puzzling Self: Self-Perception of People With Dementia in the Residential Care Homes of Hong Kong

2020 ◽  
Vol 32 (S1) ◽  
pp. 146-146
Author(s):  
Kenny Chui Chi Man
Keyword(s):  
Hong Kong ◽  
Residential Care ◽  
Care Staff ◽  
Care Homes ◽  
Chinese Society ◽  
Daily Lives ◽  
People With Dementia ◽  
The Difference ◽  
Mixed Blessing ◽  
Care Culture

In Hong Kong, people aged 65 years or more was approximately 17.7% of the total population which is identified as “super-aged” city. The prevalence of dementia in Hong Kong aged 70 years or older had risen from 6.1% to 9.3% between 1998 and 2008. However, only 11% of people with dementia are diagnosed and receive medical follow-up. Although people live longer than they once did, their increased longevity can be a mixed blessing, both for themselves and for their societies. How people perceive dementia and interpret people with dementia will be one of the key elements to develop the 21st century’s dementia care culture in the Chinese society.A qualitative research in understanding how people with dementia perceive themselves always requires interpreting how others in their daily lives perceive them was conducted. Twenty in-depth interviews and two focus groups between people with dementia and the care staff in the residential care homes in Hong Kong were done. Indeed, if someone in your daily life perceives you differently from how you perceive yourself, then how do you make sense of the discrepancy? People with dementia tend to struggle with understanding not only situations occurring around them but also who they are, especially when others’ reactions to them are unexpected.Interpretivism and thematic analysis was applied whereas the difference between real and perceived selves was found. The findings included (1) Doubt About One’s Trustworthiness; (2) Doubt About One’s Value; (3) Doubt About One’s Capability. From their perspective, residents with dementia were trustworthy, but the care staff ignored their requests and prerogatives nonetheless. They also interpreted that they were valuable, but the staff overlooked their needs and did not show them any respect, either. Beyond that, they thought that they were capable, but the staff did not recognise their abilities and disregarded their input in decision-making. Puzzled about whether they should accept or reject the staff’s responses in interpreting who they were, the residents with dementia experienced heightened confusion about their circumstances. This research become one of the directions to explore the implementation of person-centred care in the Hong Kong’s residential care homes.

Views from health professionals on accessing rehabilitation for people with dementia following a hip fracture

Dementia ◽  
2016 ◽  
Vol 16 (8) ◽  
pp. 1020-1031 ◽  
Author(s):  
Stephen T Isbel ◽  
Maggie I Jamieson
Keyword(s):  
Hip Fracture ◽  
Elderly Patients ◽  
Residential Care ◽  
Health Professionals ◽  
Clinical Care ◽  
Care Staff ◽  
Future Research ◽  
Health Care Staff ◽  
People With Dementia ◽  
Moderate Dementia

The literature reports that rehabilitation for elderly patients with mild-to-moderate dementia who have a hip fracture improves functional outcomes. However, access to rehabilitation may be difficult due to misconceptions about the ability of these patients to engage in and benefit from rehabilitation. Additionally, people who are admitted from residential care may not have the same options for rehabilitation as those admitted from home. This study sought to understand from expert clinicians how and why decisions are made to accept a person with dementia post-fracture for rehabilitation. In this Australian-based qualitative study, 12 health professionals across a state and territory were interviewed. These clinicians were the primary decision makers in accepting or rejecting elderly patients with dementia post-fracture into rehabilitation. Three key themes emerged from the data: criteria for accessing rehabilitation, what works well and challenges to rehabilitation. The participants were unanimous in the view that access to rehabilitation should be based on the ability of the patient to engage in a rehabilitation programme and not assessed solely on cognition. In terms of clinical care, a coherent rehabilitation pathway with integration of geriatric and ortho-geriatric services was reported as ideal. Challenges remain, importantly, the perception of some health care staff that people with dementia have limited capability to benefit from rehabilitation. Rehabilitation for this growing group of patients requires multiple resources, including skilled practitioners, integrated clinical systems and staff education regarding the capabilities of people with dementia. Future research in this area with patients with moderate-to-severe dementia in residential care is warranted.

scholarly journals Dropout from farm-based day care for people with dementia in Norway: a follow-up study

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
T. L. Ibsen ◽  
Ø. Kirkevold ◽  
G. G. Patil ◽  
S. Eriksen
Keyword(s):  
Social Support ◽  
Residential Care ◽  
Day Care ◽  
Agricultural Landscape ◽  
Care Service ◽  
Care Facility ◽  
Individual Characteristics ◽  
Residential Care Facility ◽  
Care Services ◽  
People With Dementia

Abstract Background Farm-based day care services (FDCs) for people with dementia are intending to provide social relationships and meaningful activities in an agricultural landscape and offer respite for next of kin. As this requires a certain cognitive and physical functioning, it is of interest to investigate how this service contribute during the course of dementia. In this study we aim to explore the individual characteristics predicting dropout from FDC. Furthermore, we investigate whether the participants who drop out of the service continue to live at home with another day care service or if they move to a residential care facility. Methods The study includes 92 people with dementia attending FDCs in Norway, assessed with standardized instruments at baseline between January 2017 and January 2018. They were followed for 1 year, and dropouts from FDC during this period were mapped. The association between individual characteristics and dropout was assessed using a Cox proportional hazards regression analysis. Results Thirty-eight people stopped attending FDCs during the study. Twenty-six moved to residential care. Among the 12 who continued to live in their own homes, 9 people started in a regular day care service. Higher score on educational level and more severe dementia, as well as lower scores on social support, increased the probability of stopping FDC. Conclusion FDCs appeared as a service that is stable over time for most participants, as more than two-third could use the care facility until the need of residential care. The transfers within care services and levels of care seemed to be characterized by continuity. More research on the growing population of educated older adults with dementia are warranted, to facilitate for their course of care needs. Finally, extended knowledge is needed to improve the collaboration between private and public networks, such as day care services, to improve the experience of social support for people with dementia.

A study protocol: co-designing a mobile application to enhance communication, safety and wellbeing for people living at home with early stage dementia (Preprint)

2020 ◽  
Author(s):  
Karen Davies ◽  
Bie Nio Ong ◽  
Sudeh Cheraghi-Sohi ◽  
Katherine Perryman ◽  
Caroline Sanders
Keyword(s):  
Mobile Application ◽  
Design Research ◽  
Early Stage ◽  
Design Method ◽  
Mobile Apps ◽  
Care Service ◽  
Normalisation Process Theory ◽  
Policy And Practice ◽  
People With Dementia ◽  
At Home

BACKGROUND Background: There is a growing interest in using mobile applications in supporting health and wellbeing. Evidence directly from people with dementia regarding the acceptability, usability and usefulness of mobile apps is limited. It builds on ‘My Health Guide’ which was co-designed with people with cognitive disabilities. . OBJECTIVE Objective This paper describes the protocol of a study evaluating an app designed for supporting wellbeing with people living with dementia, specifically focusing on enhanced safety through improved communication METHODS Method: The study will employ design research, using participatory qualitative research methods over three cycles of evaluation with service users, their families and practitioners. The study will be developed in partnership with a specialist home care service in England. A purposive case selection will be used to ensure that the cases exemplify differences in experiences. The app will be evaluated in a ‘walkthrough’ workshop by people living with early stage dementia and then trialled at home by up to 12 families in a ‘try-out’ cycle. An amended version will be evaluated in a final ‘walkthrough’ workshop in cycle 3. Data will be collected from at least four data sources during the try-out phase and analysed thematically (people with dementia, carers, practitioners and app usage). An explanatory, multiple-case study design will be used to synthesise and present the evidence from the three cycles drawing on Normalisation Process Theory to support interpretation of the findings. RESULTS Results: The study is ready to be implemented but has been paused to protect vulnerable individuals during the Coronavirus in 2020. The findings will be particularly relevant for understanding how to support vulnerable people living in the community during social distancing and the period following the pandemic, as well as providing insight into the challenges of social isolation arising from living with dementia CONCLUSIONS Discussion: Evaluating a mobile application for enhancing communication, safety and wellbeing for people living with dementia contributes to key ambitions enshrined in policy and practice, championing the use of digital technology and supporting people with dementia to live safely in their own homes. The study uses a co-design method to enable the voice of users with dementia to highlight the benefits and challenges of technology and shape future development of apps that potentially enhances safety through improved communication.

scholarly journals Caring for One’s Wife With Dementia—at Home: Older Husbands’ Experiences With Managing Challenges of Everyday Life

SAGE Open ◽  
2019 ◽  
Vol 9 (1) ◽  
pp. 215824401983445
Author(s):  
Linda Rykkje ◽  
Oscar Tranvåg
Keyword(s):  
Health Care ◽  
Health Care Services ◽  
Qualitative Interviews ◽  
Care Services ◽  
People With Dementia ◽  
Memory Clinics ◽  
Male Caregivers ◽  
Caregiving Roles ◽  
Caregiver Role ◽  
At Home

More than 80,000 Norwegians live with dementia. Most caregivers for people with dementia are spouses, and women outnumber men. Due to an aging population, and women’s higher risk of dementia as well as men’s increased life expectancy, the number of male caregivers will rise. There are some differences in the caregiving roles of men and women. Research suggest that males report lower burden and depression than female caregivers, but some men struggle to adjust to the caregiver role, and men are less likely to access health care services. The aim of this study is to explore the experiences of husbands engaged in caregiving for their home-dwelling spouse with dementia. This knowledge will add to the growing body of research about men in the context of dementia care and may raise gender awareness. The method is qualitative interviews with hermeneutical interpretation. The participants are five husbands recruited from two Hospital Memory Clinics in Norway. The results portray how the husbands managed their everyday challenges, and how they adapted to changes, experiences of loss and bereavement, and how they redefined personal freedom and expanded their responsibilities. Acknowledging the rewards of caregiving, the husbands found their life meaningful and they were thriving in their caregiving role. Health care personnel should recognize and respect the challenging life situation caregiving husbands may experience, calling for personnel to learn from, care for, and collaborate with them, enabling the couple to live a meaningful life together at home as long as possible.

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