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Rapid demographic shifts and socio-economic changes are fuelling concerns over the inadequate supply of informal care – the most common source of care-giving for older people in China. Unmet long-term care needs, which are believed to cause numerous adverse effects on health, continue to increase. Drawing data from the 2015 wave of the China Health and Retirement Longitudinal Survey, this study explores the relationship between informal care provision and unmet long-term care needs among older people in China. We first examine the availability of informal care among older people with disabilities. We then analyse whether a higher intensity of informal care leads to lower unmet needs. Our findings suggest that the majority of older people with disabilities receive a low intensity of care, i.e. less than 80 hours per month. Besides, a higher intensity of informal care received could significantly lower the probabilities of unmet needs for the disabled older adults who have mainly instrumental activities of daily living limitations. Our study points out that informal care cannot address the needs of those who are struggling with multi-dimensional difficulties in their daily living. Our findings highlight a pressing need for the government to buttress the formal care provision and delivery systems to support both informal care-givers and disabled older people in China.
Nearly 50 million people around the world live with dementia, with statistics predicting a steady increase in prevalence for the foreseeable future. There is a need for comprehensive and compassionate dementia care. Long-term care homes have built special care units for people living with middle- to late-stage dementia. Among other services, these care units often use innovative security technologies that monitor and curtail movement beyond unit exit doors. As care-givers and technology developers grapple with the ethical dilemma of autonomy and risk management, researchers are beginning to investigate the social impact of these security technologies. The present research contributes to this line of inquiry. Fieldwork was carried out on two secure long-term care units for people living with dementia. Ethnographic accounts will illustrate how security technology creates socialities of securitisation on a secure dementia unit. Using securitisation theory, I will argue that dementia has been redefined, shifting it from a health issue to a security issue. The discursive construction of dementia as a security issue will be considered in terms of the co-constructed notions of vulnerability, risk, security threat and security challenge with respect to people living with dementia. The paper investigates how securitisation influences the ethics of dementia care.
A considerable number of adults with dementia live in residential aged care facilities, where loneliness and boredom are common. Computer-based and electronic technologies have advanced significantly and there is potential for such technologies to improve engagement of residents with dementia. However, the nature and extent of the evidence supporting the use of these technologies is unclear.
The aim of this study was to investigate the use of computer-based and electronic technologies for enhancing meaningful engagement of adults with dementia living in residential aged care.
A scoping review was conducted. Nine databases were searched from 2008-2018. Included studies were summarized, compared and synthesized according to technology type.
Twenty studies were included. Most studies were conducted in Australia (n = 7) and Europe (n = 8). Study designs were quantitative (n = 12), mixed methods (n = 5), descriptive (n = 2) or qualitative (n = 1). Studies aimed to investigate interaction, engagement, behaviors or quality of life (n = 14), to examine the feasibility of technologies (n = 3), or had both aims (n = 3). Technology type fell into two categories: robotics (n = 14) and multi-media computer programs (n = 6). Across both technology types, there were conflicting results in relation to positive impact on meaningful engagement. Studies only investigated the doing, belonging and connecting aspects of meaningful engagement. Additionally, there was a lack of consistency across studies in how activity, interaction and engagement were measured.
The role and potential of new technologies to enhance meaningful engagement for those with dementia should focus on creating human-to-human interactions while taking individual preference and person-centered principles into account.
To identify discrete approaches to specialist healthcare support for older care home residents in the UK and to estimate their prevalence.
Internationally, a range of new initiatives are emerging to meet the multiple and complex healthcare needs of care home residents. However, little is known about their relative effectiveness and, given their heterogeneity, a classification scheme is required to enable research staff to explore this.
A UK survey collected information on the funding, age, coverage, aims, staffing and activities of 64 specialist care home support services. Latent class analysis (LCA) was used to allocate the sample into subgroups with similar characteristics.
Three classes were identified. Class 1 (55% of sample) contained services with a high probability of providing scheduled input (regular preplanned visits) and support for all residents and a moderate probability of undertaking medication management, but a low probability of training care home staff (‘predominantly direct care’). Class 2 (23% of sample) had a moderate/high probability of providing scheduled input, support for all residents, medication management and training (‘direct and indirect care’). Class 3 (22% of sample) had a low probability of providing scheduled input, support for all residents and medication management, but a high probability of providing training for care home staff (‘predominantly indirect care’). Consultants were more likely to be members of services in Class 1 than Class 2, and Class 2 than Class 3.
LCA offers a promising approach to the creation of a taxonomy of specialist care home support services. The skills and knowledge required by healthcare staff vary between classes, raising important issues for service design. The proposed classification can be used to explore the extent to which different organisational forms are associated with better resident, process and service outcomes.
Before drawing conclusions on the contribution of an effective intervention to daily practice and initiating dissemination, its quality and implementation in daily practice should be optimal. The aim of this process evaluation was to study these aspects alongside a randomized controlled trial investigating the effects of a multidisciplinary biannual medication review in long-term care organizations (NTR3569).
Process evaluation with multiple measurements.
Thirteen units for people with dementia in six long-term care organizations in the Netherlands.
Physicians, pharmacists, and nursing staff of participating units.
The PROPER intervention is a structured and biannually repeated multidisciplinary medication review supported by organizational preparation and education, evaluation, and guidance.
Web-based questionnaires, interviews, attendance lists of education sessions, medication reviews and evaluation meetings, minutes, evaluation, and registration forms.
Participation rates in education sessions (95%), medication reviews (95%), and evaluation meetings (82%) were high. The intervention’s relevance and feasibility and applied implementation strategies were highly rated. However, the education sessions and conversations during medication reviews were too pharmacologically oriented for several nursing staff members. Identified barriers to implementation were required time, investment, planning issues, and high staff turnover; facilitators were the positive attitude of professionals toward the intervention, the support of higher management, and the appointment of a local implementation coordinator.
Implementation was successful. The commitment of both higher management and professionals was an important factor. This may partly have been due to the subject being topical; Dutch long-term-care organizations are pressed to lower inappropriate psychotropic drug use.
This paper reports on an innovative survey of long-term care facilities for older people in the Argentine city of La Plata. It applies a range of qualitative methodologies, including a clandestine audit conducted by older people living in the community. The paper pays particular attention to the types and availability of services, perceived quality and the rigour of regulatory processes. It finds that there has been a rapid growth in the availability of formal services, but that there are many gaps in provision, especially for older people with complex care needs. There are strong indications that service quality is uneven and, in some cases, this amounts to the contravention of basic human rights. State regulation is hampered by institutional fragmentation and weak governance. A wider set of expert interviews and the limited available published information indicate that these findings are unlikely to be exceptional, and that similar issues affect rapidly emerging long-term care systems in many low- and middle-income countries.
Prior research and theories established the link between care environments and apathy. Yet, empirical evidence on how environmental stimulation impacts apathy is lacking. This study examined the association between environmental stimulation and apathy in nursing home residents with dementia.
This repeated-measure study analyzed 104 video observations of staff caregiver–resident interactions.
12 nursing homes.
63 unique staff caregiver–resident dyads that involved 42 caregivers and 44 residents with moderate to severe dementia.
Second-by-second behavioral coding using Noldus Observer software was conducted to assess apathy and environmental stimulation, using the Person-Environment Apathy Rating scale. The environment subscale includes six items: stimulation clarity, stimulation strength, stimulation specificity, interaction involvement, physical accessibility, and environmental feedback. The apathy subscale includes six items: facial expression, eye contact, physical engagement, purposeful activity, verbal tone, and verbal expression. Multilevel linear models were used for analysis.
Results showed that apathy was not associated with the overall quality of environmental stimulation but was significantly associated with stimulation specificity (coefficient = −2.23, p = 0.049). However, the association was not significant after controlling for resident characteristics (p = 0.082). In addition, higher levels of environmental feedback were associated with lower apathy levels (coefficient = −2.14, p = 0.001). The association remained significant after controlling for resident characteristics (coefficient = −1.65, p = 0.014).
Findings reveal that when environmental stimulation is individually tailored and prompts engagement, residents are less apathetic. This study highlights the effect of environmental stimulation on apathy. Future research should explore interventions that modify environmental stimulation to reduce apathy and improve dementia care.
Demographic and societal changes make it more and more indispensable to protect against the risk of care costs surpassing a person’s financial means. Nevertheless, only few governments have acted to create public funding systems that, if existent at all, usually only cover part of the expenses for elder care. Long-term care insurance (LTCI) is designed to fund basic care needs in later life, such as washing and dressing. Regardless of where individuals receive this support in old age, how it is funded is a growing issue. In many countries, people may augment their compulsory state system with private policies available from insurance companies.
In Germany, a well-established public system that underwent major reforms exists. From 2017 onwards, a completely new care definition and assessment process replaced the former ones. Two major changes constitute the reform: First, when evaluating the need for care, the former focus on estimating the length of time required for care was replaced by the determination of the degree of independence. Second, cognitive impairments will be acknowledged more adequately than in the past, where the focus was on physical abilities. Furthermore, the contribution to be paid by the care recipient in a nursing home will no longer be dependent on the severity of the care need.
In Germany, private LTC products used a combination of the social security definition, an ADL-based trigger and a dementia trigger until the end of 2016. Thus, the reform has repercussions for the local private insurance industry. What would happen to in-force business, how a new benefit trigger should look like, how old and new definition compare and how pricing rates can be derived were only some of the questions that had to be answered in advance.
The reform could point the way for future public schemes and private policies elsewhere. Which questions had to be answered and what issues had to be solved in advance, together with lessons learned during and shortly after the reform was undertaken, can serve as an accompaniment for the introduction or reform of public LTC schemes and for the local insurance industry in other countries.
This is a retrospective cohort study based on data from five nursing homes which aims to appraise how physical and cognitive characteristics of nursing home residents were associated with the use of restraints, and to provide information on their prevalence in Spain. The goal was to assess, in a visual way, the possible interactions between the nursing homes residents’ characteristics and their association with the use of restraints. Motivation, risk factors, characteristics of the residents analysed by validated rating systems that assess mobility, level of dependence, cognitive condition and nutritional status, and their association with the use of restraints, were described by means of linear and non-linear multivariate approaches in the form of self-organised maps. Findings showed that the prevalence of restraints was high when compared to other developed countries. The visual analysis reinforced the knowledge that a greater impairment was associated with the use of restraints and vice versa. However, the residents’ characteristics were not always associated with the use of restraints. Subjective factors seem to play a relevant role in decision-making, so it is important to assess risk factors continuously and determine the actual need for the use of restraints from an individual perspective by basing the criteria on specific objectives, and on consistent, reproducible and reliable methods. Initiatives to minimise these subjective factors should be promoted. Likewise, a clear definition of physical restraints should be offered at each centre. In addition, effective legislation that clearly states the need, alternatives and motivation for the use of restraints is needed.
The aim of this study was to investigate survival time and life-expectancy in people with young-onset dementia (YOD) and to examine the relationship with age, sex, dementia subtype and comorbidity.
Design, Setting and Participants:
Survival was examined in 198 participants in the Needs in Young-onset Dementia study, including participants with Alzheimer’s dementia (AD), vascular dementia (VaD) and frontotemporal dementia (FTD).
The primary outcomes were survival time after symptom onset and after date of diagnosis. Cox proportional hazards models were used to explore the relationship between survival and age, sex, dementia subtype and comorbidity. Additionally, the impact on remaining life expectancy was explored.
During the six-year follow-up, 77 of the participants died (38.9%), 78 participants survived (39.4%) and 43 were lost to follow-up (21.7%). The mean survival time after symptom onset and diagnosis was 209 months (95% CI 185-233) and 120 months (95% CI 110-130) respectively. Participants with AD had a statistically significant shorter survival compared with VaD participants, both regarding survival after symptom onset (p = 0.047) as well as regarding survival after diagnosis (p = 0.049). Younger age at symptom onset or at diagnosis was associated with longer survival times. The remaining life expectancy, after diagnosis, was reduced with 51% for males and 59% for females compared to the life expectancy of the general population in the same age groups.
It is important to consider the dementia subtype when persons with YOD and their families are informed about the prognosis of survival. Our study suggests longer survival times compared to other studies on YOD, and survival is prolonged compared to studies on LOD. Younger age at symptom onset or at diagnosis was positively related to survival but diagnosis at younger ages, nevertheless, still diminishes life expectancy dramatically.
Little is known about the dynamic relationship between the different funding sources of community-based social care in England. Using Waves 2–6 (2004–2013) of the English Longitudinal Study of Ageing survey, I estimated dynamic multi-level cross-classified mixed-effects logistic regression models to investigate whether receiving services by one source is more or less likely if an older person was already receiving services funded by the same source or another in the previous period. Four hypotheses between formal privately and publicly funded help and informal help are tested: substitution, complementarity, compensation and task-specificity. I also report evidence that older people on low incomes residing in local authorities that reduce social care spending are especially affected.
The elderly population and numbers of nursing homes residents are growing at a rapid pace globally. Uncertainty exists regarding the actual rates of major depressive disorder (MDD), bipolar disorder and schizophrenia as previous evidence documenting high rates relies on suboptimal methodology.
To carry out a systematic review and meta-analysis on the prevalence and correlates of MDD, bipolar disorder and schizophrenia spectrum disorder among nursing homes residents without dementia.
Major electronic databases were systematically searched from 1980 to July 2017 for original studies reporting on the prevalence and correlates of MDD among nursing homes residents without dementia. The prevalence of MDD in this population was meta-analysed through random-effects modelling and potential sources of heterogeneity were examined through subgroup/meta-regression analyses.
Across 32 observational studies encompassing 13 394 nursing homes residents, 2110 people were diagnosed with MDD, resulting in a pooled prevalence rate of 18.9% (95% CI 14.8–23.8). Heterogeneity was high (I2 = 97%, P≤0.001); no evidence of publication bias was observed. Sensitivity analysis indicated the highest rates of MDD among North American residents (25.4%, 95% CI 18–34.5, P≤0.001). Prevalence of either bipolar disorder or schizophrenia spectrum disorder could not be reliably pooled because of the paucity of data.
MDD is highly prevalent among nursing homes residents without dementia. Efforts towards prevention, early recognition and management of MDD in this population are warranted.
Declaration of interest
E.V. has received grants and served as consultant, advisor or continuing medical education speaker for the following organisations: AB-Biotics, Allergan, Angelini, AstraZeneca, Bristol-Myers Squibb, Dainippon Sumitomo Pharma, Farmindustria, Ferrer, Gedeon Richter, Glaxo-Smith-Kline, Janssen, Lundbeck, Otsuka, Pfizer, Roche, Sanofi-Aventis, Servier, Shire, Sunovion, Takeda, the Brain and Behaviour Foundation, the Spanish Ministry of Science and Innovation (CIBERSAM), the Seventh European Framework Programme (ENBREC) and the Stanley Medical Research Institute.
Registered nurses (RNs) and licensed practical nurses (LPNs) provide the skilled component of nursing care in Canadian residential long-term care facilities, yet we know little about this important workforce. We surveyed 309 RNs and 448 LPNs from 91 nursing homes across Western Canada and report descriptively on their demographics and work and health-related outcomes. LPNs were significantly younger than RNs, worked more hours, and had less nursing experience. LPNs also experienced significantly more dementia-related responsive behaviours from residents compared to RNs. Younger LPNs and RNs reported significantly worse burnout (emotional exhaustion) and poorer mental health compared to older age groups. Significant differences in demographics and work- and health-related outcomes were also found within the LPN and RN samples by province, region, and owner-operator model. These findings can be used to inform important policy decisions and workplace planning to improve quality of work life for nurses in residential long-term care facilities.
In Canadian residential long-term care, paid companion services are increasingly viewed as helping to meet older adults’ psycho-social needs. Complementing the critique of these services from a political economy perspective, analyses of companions’ talk about their work can illuminate not only why companions stay in devalued and often invisible work, but also how social assumptions and circulating narratives about nursing homes and older adults are implicated in this process. In this article, we draw on in-depth analyses of interviews with both companions and organisational representatives. We interpret companions’ accounts in relation to their need to justify the necessity for their work to their employers (families), to nurture good relationships with the facilities in which they work, and to maintain a sense of identity as a responsible, conscientious and ‘caring self’. In this way, these precarious workers inadvertently reproduce dominant narratives, including those that stigmatise dementia and residential care, and facilitate the privatisation of person-centred, relational care. Organisational representatives generally reproduce similar assumptions about care responsibilities, in a context in which facilities are increasingly challenged to meet a range of resident needs. Discussion highlights tensions around responsibility for psycho-social care in nursing homes, highlighting organisational vested interests in avoiding risk and downloading responsibilities to families and to private, independent and temporary workers.
Hospitalizations of long-term care (LTC) residents can result in adverse outcomes such as functional decline. The objective of our study was to investigate the association between demographic and health information and hospitalization rate for newly admitted LTC residents. We conducted a retrospective cohort study of all LTC homes in six provinces and one territory in Canada, using data from the Resident Assessment Instrument–Minimum Data Set (RAI-MDS) 2.0 and the Discharge Abstract Database. We included newly admitted residents with an assessment between January 1 and December 31, 2013 (n = 37,998). Residents who were male, had higher health instability, and had moderate or severe functional impairment had higher rates of hospitalization, whereas residents who had moderate or severe cognitive impairment had decreased rates. The results of our study can be used to identify newly admitted residents who may be at risk for hospitalization, and appropriately target preventative interventions, including rehabilitation, advance care planning, palliative care, and geriatric specialty services.
Although providing direct care to residents with dementia, long-term care (LTC) home staff of registered nurses’, registered practical nurses’, and personal support workers’ involvement in end-of-life decision-making is rarely acknowledged. The purpose of this study was to examine barriers and facilitators to LTC home staff involvement in end-of-life decision-making for people with advanced dementia. We report on the barriers to staff involvement in decision-making. Using an interpretive descriptive design, four major barriers to staff involvement in decision-making were identified: (a) the predominance of a biomedical model of care; (b) a varied understanding of a palliative approach; (c) challenging relationships with families; and (d) a discomfort with discussing death. Findings suggest that the predominant biomedical model in LTC homes, while important, must be imbued with a philosophy that emphasizes relationships among residents with dementia, family and staff.
The purpose of this study was to analyse the consistency and extent of palliative content across high-level guiding documents related to the care of persons residing in Canadian long-term care homes. A systematic search was conducted examining documents at the national level and across five provinces (Alberta, Ontario, Saskatchewan, Manitoba, and Quebec). Twenty-five documents were selected based on inclusion criteria from 273 documents identified in the systematic search. The majority of these documents were created nationally (48%) or in Ontario (28%). Documents varied in palliative topics discussed, and long-term care was discussed minimally. A minimal number of palliative care guiding documents were found. Long-term care specific documents were absent, and all documents lacked consistency on palliative topics. It is imperative that palliative principles are present and consistent in high-level documents in order to improve the quality of life and care for long-term care residents across Canada.
The average expected lifespan in Canadian long-term care (LTC) homes is now less than two years post-admission, making LTC a palliative care setting. As little is known about the readiness of LTC staff in Canada to embrace a palliative care mandate, the main objective of this study was to assess qualities relevant to palliative care, including personal emotional wellbeing, palliative care self-efficacy and person-centred practices (e.g. knowing the person, comfort care). A convenience sample of 228 professional and non-professional staff (e.g. nurses and nursing assistants) across four Canadian LTC homes participated in a survey. Burnout, secondary traumatic stress and poor job satisfaction were well below accepted thresholds, e.g. burnout: mean = 20.49 (standard deviation (SD) = 5.39) for professionals; mean = 22.09 (SD = 4.98) for non-professionals; cut score = 42. Furthermore, only 0–1 per cent of each group showed a score above cut-off for any of these variables. Reported self-efficacy was moderate, e.g. efficacy in delivery: mean = 18.63 (SD = 6.29) for professionals; mean = 15.33 (SD = 7.52) for non-professionals; maximum = 32. The same was true of self-reported person-centred care, e.g. knowing the person; mean = 22.05 (SD = 6.55) for professionals; mean = 22.91 (SD = 6.16) for non-professionals; maximum = 35. t-Tests showed that non-professional staff reported relatively higher levels of burnout, while professional staff reported greater job satisfaction and self-efficacy (p < 0.05). There was no difference in secondary traumatic stress or person-centred care (p > 0.05). Overall, these results suggest that the emotional wellbeing of the Canadian LTC workforce is unlikely to impede effective palliative care. However, palliative care self-efficacy and person-centred care can be further cultivated in this context.
Although moving from institutional to home-like long-term care (LTC) settings can promote and sustain the health and wellbeing of older adults, there has been little research examining how home is perceived by older adults when moving between care settings. A qualitative study was conducted over a two-year period during the relocation of residents and staff from an institutional LTC home to a purpose-built LTC home in Western Canada. The study explored perceptions of home amongst residents, family members and staff. Accordingly, 210 semi-structured interviews were conducted at five time-points with 35 residents, 23 family members and 81 staff. Thematic analyses generated four superordinate themes that are suggestive of how to create and enhance a sense of home in LTC settings: (a) physical environment features; (b) privacy and personalisation; (c) autonomy, choice and flexibility; and (d) connectedness and togetherness. The findings reveal that the physical environment features are foundational for the emergence of social and personal meanings associated with a sense of home, and highlight the impact of care practices on the sense of home when the workplace becomes a home. In addition, tension that arises between providing care and creating a home-like environment in LTC settings is discussed.
The impact that providing care to ageing parents has on adult children's lives may depend on the long-term care (LTC) context. A common approach to test this is to compare whether the impact of care-giving varies between countries with different LTC coverage. However, this approach leaves considerable room for omitted variable bias. We use individual fixed-effects analyses to reduce bias in the estimates of the effects of informal care-giving on quality of life, and combine this with a difference-in-difference approach to reduce bias in the estimated moderating impact of LTC coverage on these effects. We draw on longitudinal data for Sweden and Denmark from the Survey of Health, Ageing and Retirement in Europe (SHARE) collected between 2004 and 2015. Both countries traditionally had generous LTC coverage, but cutbacks were implemented at the end of the 20th century in Sweden and more recently in Denmark. We use this country difference in the timing of the cutbacks to shed light on effects of LTC coverage on the impact care-giving has on quality of life. Our analyses show that care-giving was more detrimental for quality of life in Sweden than in Denmark, and this difference weakened significantly when LTC coverage was reduced in Denmark, but not in Sweden. This suggests that LTC coverage shapes the impact of care-giving on quality of life.