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Limited communicative resources due to dementia-related memory problems can be consequential for opportunities to claim epistemic rights and initiate and pursue communicative projects for persons living with dementia. This conversation analytic case study of a video-recorded homecare visit between Koki and his homecare nurse focuses on an extended negotiation concerning a factual disagreement related to a practical problem. The study explores how Koki manages to mobilize remaining communicative resources for initiating and pursuing a topical agenda, as well as how the caregiver recognizes and supports these initiatives. The analysis describes how a person with dementia manages to influence the course of action and, in collaboration with the interlocutor, succeeds in achieving two interrelated projects, one being within an epistemic domain and the other within a deontic domain. Koki’s persistent use of first actions, with repeated and upgraded knowledge claims, as well as embodied and verbal displays of a practical problem, contributes to influencing both the topical agenda and action agenda. The analysis shows how an attentive interlocutor may collaborate in identifying a practical problem and finding a solution to it, and thereby assist the person with dementia in taking control over his everyday life despite limited communicative resources.
As the population ages and the prevalence of dementia increases, caring for a relative living at home with dementia has become a reality for many families worldwide. Studies have shown that families are confronted with diverse difficulties as they try to address the challenges involved in providing care. By understanding how they manage daily life, formal service providers become better equipped to meet the diverse needs of these families. Learning how families live with memory loss and cognitive changes calls for an understanding of the shared context surrounding the person, including the collective of people, and their connections. With the research method of ethnographic case study, we followed eight families living at home with dementia for two years. All participants had been placed on a waiting list for a specialised dementia day care programme. The analysis presented here is based on three cases which reflect widely different experiences and situations. We describe how these families dealt with their daily living at home, if and how they made use of the formal support available and what approaches they found helpful for improving their lives. The results show how the persons living with dementia and their care-givers drew on the collective of their backgrounds, surroundings and available support. With diverse arrangements, families tried to find ways to make their daily lives work out. But constant re-arrangement was necessary. This knowledge could be a central learning point for formal service to build on. While systematic or routine procedures in service provision can be helpful, time and space must be provided for professionals to understand families' different practices, so that they can provide family-centred support.
UK policy discourse presents technology as a solution to challenges facing care services, including issues of quality and the mismatch between care workforce supply and demand. This discourse characterises technology as ‘transformative’, homogenous and wholly positive for care delivery, eliding the diversity of digital devices and systems and their varied uses. Our paper draws on data gathered through 34 interviews with care sector stakeholders and four in-depth case studies of UK homecare providers to comparatively analyse ‘storylines’ of technological solutions expressed by policy (macro-level), sector stakeholders (meso-level) and homecare managers and care workers (micro-level) alongside enacted experiences of technology-in-use. The ‘storylines’ presented by care sector stakeholders and homecare managers converged with those of the policy discourse, emphasising technology’s capacity to enhance quality and efficiency. Our case studies however highlighted several implications for care work and organisational practice in homecare provision: the technologies we observed sometimes produced additional tasks and responsibilities, undermining the efficiency and quality storylines. The experiences of care providers and workers engaging with technologies in homecare warrant further investigation and greater prominence to challenge a discourse which is at times overly simplistic and optimistic.
Little is known about risk management in homecare for people with dementia. We aimed to gain an understanding of the ways in which homecare workers assess and manage risk whilst caring for people with dementia in their own homes. We conducted a qualitative interview study with 17 homecare workers assisting people with dementia with their personal care. Interviews were face-to-face, semi-structured, recorded and transcribed verbatim. Analysis was inductive and thematic. A key theme of risk was identified, with three main sources: the client as a source of risk to the homecare worker, the clients' home and behaviours as a risk to the client, and the wider health and social care system as a risk to both clients and homecare workers. Three interrelated aspects of risk were found to influence homecare workers' decision making and actions: homecare workers' perception of the level of risk, their perceived ability to control the risk and their tolerability of risk. The higher the perceived risk, the stronger the action taken by the worker or agency to mitigate it and the greater the impact on the client. To support effective development of this workforce there is a need to devise training that incorporates the use of tacit knowledge and experiential learning. Risk management policies for homecare should acknowledge and utilise the expertise, experiences and values of homecare workers.
The number of patients treated with prolonged mechanical ventilation (PMV) is steadily rising. Traditionally treated within specialized long-term care facilities (LTCFs), healthcare providers are increasingly promoting homecare as a technologically safe, humane, and cheaper alternative. Little is known concerning their informal caregivers (ICGs), despite their crucial role in facilitating care. This study examines caregiver strain among the primary ICG of PMV patients treated at home vs. LTCF.
Method
This study was an observational cross-sectional study. The study enrolled 120/123 PMV patients ≥18 years within the study region (46 treated with homecare/74 treated at the LTCF) and 106 ICGs (34 ICGs/46 homecare patients and 72 ICGs/74 LTCF patients). Caregiver assessment included the 13-item Modified Caregiver Strain Index (Mod CSI) (0–26 maximum); patient assessment included symptom burden (the revised Edmonton Symptom Assessment System).
Results
The mean age of ICGs was 58.9 years old; 60.4% were females; 82.1% were married; 29.2% were patient's spouses; and 40.6% were patient's children. The total Mod CSI was 13.58 (SD 6.52) and similar between home vs. LTCF (14.30 SD 7.50 vs. 13.26 SD 6.03, p = 0.50), or communicative vs. non-communicative patients (13.50 SD 7.12 vs. 13.64 SD 6.04, p = 0.93). Hierarchical analysis identified three clusters of caregiver strain, with ICGs at home vs. LTCF reporting significantly lower mood strain, higher burden, and similar levels of lifestyle disturbance. In adjusted models, homecare was significantly associated with reduced mood strain and increased burden, while increased patient symptomatology was significantly associated with total strain, mood, and burden strain clusters.
Significance of results
Recognizing the different patterns of caregiver strain at home or LTCF is a prerequisite for addressing their palliative care needs and improving the wellbeing and resilience of informal caregivers, who often play a critical role in deciding whether to treat the PMV patient at home or LTCF.
Being dependent on homecare potentially threatens a person's integrity and autonomy, particularly when people are dependent on help to manage basic bodily functions that involve intimacy and nudity, making the person vulnerable despite being in his or her own home. As the population continues to age and live longer, more people are expected to be dependent on homecare. The aim of this study was to investigate the phenomenon of dependence on homecare among people ageing at home. Individual in-depth interviews were used to explore 15 Danish and Norwegian homecare receivers’ experiences of dependence on homecare. Interview records were transcribed and analysed in a hermeneutical phenomenological process described by van Manen. First and foremost, the experience of dependence on homecare is a question of adaption. The older people in this study struggled to get used to their deteriorating body and at the same time they continuously had to negotiate to get care in accordance with their values. Being dependent on care could be experienced as being reduced to a task or a problem to be solved though the participants had a significant need for undivided mental attention. The presence of homecare staff in the participants’ homes could entail a change where the participants experienced that they lost control over the surroundings. According to the voices of the older people in this study, future homecare should be accommodated in an organisational set-up that gives priority to stability and continuity in the relation between the homecare receiver and the homecare staff. Also it is significant that homecare staff do not have a task-oriented approach to their job and are sensitive to the values of the homecare receivers.
Caring for infants after the first-stage palliative surgery for single-ventricle heart disease bring challenges beyond the usual parenting responsibilities. Current studies fail to capture the nuances of caregivers’ experiences during the most critical “interstage” period between the first and second surgery.
Objectives:
To explore the perceptions of caregivers about their experiences while transitioning to caregiver roles, including the successes and challenges associated with caregiving during the interstage period.
Methods:
Constructivist Grounded Theory methodology guided the collection and analysis of data from in person or telephonic interviews with caregivers after their infants underwent the first-stage palliative surgery for single-ventricle heart disease, and were sent to home for 2–4 months before returning for their second surgery. Symbolic interactionism informed data analyses and interpretation.
Results:
Our sample included 14 parents, who were interviewed 1–2 times between November, 2019 and July, 2020. Most patients were mothers (71%), Latinx (64%), with household incomes <$30K (42%). Data analysis led to the development of a Grounded Theory called Developing a Sense of Self-Reliance with three categories: (1) Owning caregiving responsibilities despite grave fears, (2) Figuring out how “to make it work” in the interstage period, and (3) Gaining a sense of self-reliance.
Conclusions:
Parents transitioned to caregiver roles by developing a sense of self-reliance and, in the process, gained self-confidence and decision-making skills. Our study responded to the key research priority from the AHA Scientific Statement to address the knowledge gap in home monitoring for interstage infants through qualitative research design.
In the context of demographic aging, preventing autonomy loss is a major issue. Adapting care systems to help keep seniors at home is a daily challenge. “La Mutualité Française”, a national mutual insurance company, has implemented in one of its healthcare services an innovative program to strengthen well-being: “The Well-Being Autonomy Pole.” This program comprises five Prevention and Support Care components and hypothesizes that strengthening the well-being of elderly people already suffering from physical limitations would prevent their autonomy decline. The originality of this program is its focus on elderly people who have rarely been studied in terms of preventing autonomy loss, given their existing functional limitations. A first evaluation was carried out over three months to verify the methodological feasibility of an impact assessment and to provide preliminary results on the effectiveness of the program. Key findings suggest improved levels of self-esteem, physical well-being, psychological autonomy and decreased anxiety. Methodological limitations of this first feasibility assessment and perspectives for future research are discussed.
Young-onset dementia (YOD) is defined as the onset of dementia symptoms before the age of 65 years and accounts for 2–8% of dementia. YOD patients and their caregivers face unique challenges in diagnosis and management. We aimed to compare the characteristics of rural YOD and late-onset dementia (LOD) patients at a rural and remote memory clinic in Western Canada.
Methods:
A total of 333 consecutive patients (YOD = 61, LOD = 272) at a rural and remote memory clinic between March 2004 and July 2016 were included in this study. Each patient had neuropsychological assessment. Health, mood, function, behaviour and social factors were also measured. Both groups were compared using χ2 tests and independent sample tests.
Results:
YOD patients were more likely to be married, employed, current smokers and highly educated. They reported fewer cognitive symptoms, but had more depressive symptoms. YOD patients were less likely to live alone and use homecare services. YOD caregivers were also more likely to be a spouse and had higher levels of distress than LOD caregivers. Both YOD and LOD patient groups were equally likely to have a driver’s licence.
Conclusions:
Our findings indicate YOD and LOD patients have distinct characteristics and services must be modified to better meet YOD patient needs. In particular, the use of homecare services and caregiver support may alleviate the higher levels of distress found in YOD patients and their caregivers. Additional research should be directed to addressing YOD patient depression, caregiver distress and barriers to services.
As more older persons opt to age in place, there is a growing trend to hire migrant workers as live-in caregivers to care for them. This raises the need to examine the quality of care they receive within this unique care setting. The objective of this pilot study was to establish the components of quality of care as provided by migrant live-in caregivers.
Methods:
We interviewed a convenience sample of older persons cared for by migrant live-in caregivers and their relatives. When relatives reported that older persons could not be interviewed due to advanced dementia, only relatives were interviewed. Overall, 72 older persons and 117 relatives were interviewed. We used the Quality of Care Questionnaire (QuCQ) developed for this study to examine the main components of quality of care in this population.
Results:
Factor analysis using older persons’ data revealed two factors. In the first factor, “caretaking,” items concerning provision of prompt care exhibited the highest loadings. Items measuring interpersonal aspects of the care dynamic had the highest loadings in the second factor, thus labeled “relationship.” The factor analysis based on relatives’ data yielded similarities and differences with the one based on older persons’ data. Yet, there were significant correlations between relative and older persons’ responses when using the older persons’ factor structure.
Conclusions:
According to older persons and relatives, quality of care depends on the extent to which older persons’ care-related needs, as well as social ones, are addressed. Appropriate evaluation of quality of care in the live-in setting is important for its improvement.
Despite the increasing prominence of residential hospices as a place of death and that, in many regards, this specialized care represents a gold standard, little is known about the care experience in this setting. Using qualitative survey data, we examined the positive and negative perceptions of care in hospices and in other prior settings.
Method:
Qualitative comments were extracted from the CaregiverVoice survey completed by bereaved caregivers of decedents who had died in 16 residential hospices in Ontario, Canada. On this survey, caregivers reported what was good and bad about the services provided during the last three months of life as separate open-text questions. A constant-comparison method was employed to derive themes from the responses.
Results:
A total of 550 caregivers completed the survey, 94% (517) of whom commented on either something good (84%) and/or bad (49%) about the care experience. In addition to residential hospice, the majority of patients represented also received palliative care in the home (69%) or hospital (59%). Overall, most positive statements were about care in hospice (71%), whereas the negative statements tended to refer to other settings (81%). The hospice experience was found to exemplify care that was compassionate and holistic, in a comforting environment, offered by providers who were personable, dedicated, and informative. These humanistic qualities of care and the extent of support were generally seen to be lacking from the other settings.
Significance of results:
Our examination of the good and bad aspects of palliative care received is unique in qualitatively exploring palliative care experiences across multiple settings, and specifically that in hospices. Investigation of these perspectives affirmed the elements of care that dying patients and their family caregivers most value and that the hospices were largely effective at addressing. These findings highlight the need for reinforcing these qualities in other end-of-life settings to create comforting and supportive environments.
This article presents the results of a qualitative study on the contributions made by volunteers from a volunteer community organization to the home care of older adults living in a rural setting. In this study, the volunteer was considered as part of a social care system made up of a number of groups (the elderly themselves, those close to them, professional health providers, and volunteers). Results show that the lines delimiting the responsibilities of these various groups are neither clear nor precise. The place of the volunteer must take into account the nature of the participation of the other groups. How far the services offered by volunteers are used depends upon the characteristics that define their contributions and on the type of relationship they develop with a given older adult.
In 1999 Veterans Affairs Canada (VAC) implemented the Overseas Service Veterans (OSV) At Home Pilot Project in response to the problem that a growing number of clients were on waiting lists for beds in long-term care facilities. The At Home pilot offered certain clients on waiting lists, who met nursing-level care and military-service requirements, access to home care and treatment services for which they had previously been ineligible. A review of the pilot showed that a large majority of clients preferred to remain at home, with support, rather than accept a long-term care placement, even when a bed became available. The pilot has helped reduce waiting times for nursing home beds and may have important implications for reducing costs and the demand for long-term care beds.
This article describes and evaluates cash-for-care programmes for older people in four European countries, namely Home-Care Grants in Ireland, Direct Payments in the United Kingdom (England), Service Vouchers in Finland and Personal Budgets in The Netherlands. The purpose is to raise understanding of the background and reasons for the introduction of cash-for-care programmes and their impact on the countries' care regimes. It is argued that while the motives for introducing cash-for-care programmes in the four countries are similar, namely to promote choice and autonomy, to plug gaps in existing provision, to create jobs, and to promote efficiency, cost savings and domiciliary care, the relative importance of these goals varies. Current cash-for-care programmes have comparatively modest coverage as compared with direct service provision and provide no more than an optional, supplementary source of care in three of the studied countries. Cash-for-care schemes have not radically transformed the care regimes in Finland, The Netherlands or the United Kingdom. In Ireland, however, the restricted availability of alternative forms of formal service provision means that the expansion of cash-for-care might shift care provision significantly towards private provision and financing.
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