In the UK and the Westernised countries, most people die aged 80+ from disabling, chronic and degenerative diseases, having spent several years in poor health. There is thus continuity between long-term care (LTC) and end of life care (EOLC) in old age, but this continuity is poorly understood within policy and almost nothing is known about what determines the modality and intensity of LTC provision in old age towards the end of life. Drawing on multinomial logistic regression analysis of the English Longitudinal Study of Ageing (ELSA), this paper evaluates how health and socio-demographic factors affect the relative probability of receiving care through one of five long-term care arrangements (LTCAs) from the time of need at age =50 to death; and assesses the consequences this has for the English LTC and EOLC policy and planning. The study reveals that hospices provide end-of-life LTC for cancer diagnoses and adults aged 50-64, while care homes provide open-ended and end-of-life LTC for non-cancer diagnoses, dementia, severe disability, and adults aged 80+. Further, the informal, formal, mixed and care home LTCAs reflect increasing levels of disability and ill-health, and decreasing levels of family support, with differences concerning education and gender. Finally, dementia and Parkinson's disease are the single strongest determinants of high formal LTC provision, and overall high care needs determine high formal LTC provision. Within the English context, the consequences of this are that: 1) Continued reliance on informal family care is not sustainable; 2) To provide free formal LTC to old adults with high care needs is appropriate; and 3) Hospices do not cater for the prevalent form of dying in old age while care homes do, being the de facto hospices for severely disabled, very old (80+) adults with dementia. Yet this is not represented in English EOLC policy and research.
OBJECTIVES: Adult day service centers (ADSCs) may serve as an entrée to advance care planning. This study examined state requirements for ADSCs to provide advance directives (AD) information to ADSC participants, ADSCs' awareness of requirements, ADSCs' practice of providing AD information, and their associations with the percentage of participants with ADs.
METHODS: Using the 2016 National Study of Long-Term Care Providers, analyses included 3,305 ADSCs that documented ADs in participants' files. Bivariate and linear regression analyses were conducted.
RESULTS: Nine states had a requirement to provide AD information. 80.8% of ADSCs provided AD information. 41.3% of participants had documented ADs. There were significant associations between state requirement, awareness, and providing information with AD prevalence. State requirement was mediated by awareness.
DISCUSSION: This study found many ADSCs provided AD information, and ADSCs that thought their state had a requirement and provided information was associated with AD prevalence, regardless of state requirements.
OBJECTIVE: Quality end-of-life (EOL) care is critical for dying residents and their family/friend caregivers. While best practices to support resident comfort at EOL in long-term care (LTC) homes are emerging, research rarely explores if and how the type of care received at EOL may contribute to caregivers' perceptions of a good death. To address this gap, this study explored how care practices at EOL contributed to caregivers' perceptions of a good resident death.
METHOD: This study used a retrospective cross-sectional survey design. Seventy-eight participants whose relative or friend died in one of five LTC homes in Canada completed self-administered questionnaires on their perceptions of EOL care and perceptions of a good resident death.
RESULTS: Overall, caregivers reported positive experiences with EOL care and perceived residents to have died a good death. However, communication regarding what to expect in the final days of life and attention to spiritual issues were often missing components of care. Further, when explored alongside direct resident care, family support, and rooming conditions, staff communication was the only aspect of EOL care significantly associated with caregivers' perceptions of a good resident death.
SIGNIFICANCE OF RESULTS: The findings of this study suggest that the critical role staff in LTC play in supporting caregivers' perceptions of a good resident death. By keeping caregivers informed about expectations at the very end of life, staff can enhance caregivers' perceptions of a good resident death. Further, by addressing spiritual issues staff may improve caregivers' perceptions that residents were at peace when they died.
Background/objectives: Opioids relieve symptoms in terminal care. We studied opioid underuse in long-term care facilities, defined as residents without opioid prescription despite pain and/or dyspnoea, 3 days prior to death.
Design and setting: In a proportionally stratified randomly selected sample of long-term care facilities in six European Union countries, nurses and long-term care facility management completed structured after-death questionnaires within 3 months of residents’ death.
Measurements: Nurses assessed pain/dyspnoea with Comfort Assessment in Dying with Dementia scale and checked opioid prescription by chart review. We estimated opioid underuse per country and per symptom and calculated associations of opioid underuse by multilevel, multivariable analysis.
Results: nurses’ response rate was 81.6%, 95.7% for managers. Of 901 deceased residents with pain/dyspnoea reported in the last week, 10.6% had dyspnoea, 34.4% had pain and 55.0% had both symptoms. Opioid underuse per country was 19.2% (95% confidence interval: 12.9–27.2) in the Netherlands, 25.2% (18.3–33.6) in Belgium, 29.3% (16.9–45.8) in England, 33.7% (26.2–42.2) in Finland, 64.6% (52.0–75.4) in Italy and 79.1% (71.2–85.3) in Poland (p < 0.001). Opioid underuse was 57.2% (33.0–78.4) for dyspnoea, 41.2% (95% confidence interval: 21.9–63.8) for pain and 37.4% (19.4–59.6) for both symptoms (p = 0.013). Odds of opioid underuse were lower (odds ratio: 0.33; 95% confidence interval: 0.20–0.54) when pain was assessed.
Conclusion: Opioid underuse differs between countries. Pain and dyspnoea should be formally assessed at the end-of-life and taken into account in physicians orders.
CONTEXT: Symptom management is essential in the end of life care of long-term care facility residents.
OBJECTIVES: To study discrepancies and possible associated factors in staff and family carers' symptom assessment scores for residents in the last week of life.
METHODS: A post mortem survey in Belgium, the Netherlands and Finland: staff and family carers completed the "End-Of-Life in Dementia - Comfort Assessment in Dying" scale (EOLD-CAD), rating 14 symptoms on a 1 to 3-point scale. Higher scores reflect better comfort. We calculated mean paired differences in symptom, subscale and total scores at a group level and interrater agreement and percentage of perfect agreement at a resident level.
RESULTS: Mean staff scores significantly reflected better comfort than those of family carers for the total End-of-Life in Dementia—Comfort Assessment in Dying (31.61 vs. 29.81; P < 0.001) and the physical distress (8.64 vs. 7.62; P < 0.001) and dying symptoms (8.95 vs. 8.25; P < 0.001) subscales. No significant differences were found for emotional distress and well-being. The largest discrepancies were found for gurgling, discomfort, restlessness, and choking for which staff answered not at all, whereas the family carer answered a lot, in respectively, 9.5%, 7.3%, 6.7%, and 6.1% of cases. Inter-rater agreement ranged from 0.106 to 0.204, the extent of perfect agreement from 40.8 for lack of serenity to 68.7% for crying.
CONCLUSION: There is a need for improved communication between staff and family and discussion about symptom burden in the dying phase in long-term care facilities.
OBJECTIVE: To examine the regional variation in hospital care utilization in the last 6 months of life of Dutch patients with lung cancer and to test whether higher degrees of hospital utilization coincide with less general practitioner (GP) and long-term care use.
DESIGN: Cross-sectional claims data study.
SETTING: The Netherlands.
PARTICIPANTS: Patients deceased in 2013-2015 with lung cancer (N = 25 553).
MAIN OUTCOME MEASURES: We calculated regional medical practice variation scores, adjusted for age, gender and socioeconomic status, for radiotherapy, chemotherapy, CT-scans, emergency room contacts and hospital admission days during the last 6 months of life; Spearman Rank correlation coefficients measured the association between the adjusted regional medical practice variation scores for hospital admissions and ER contacts and GP and long-term care utilization.
RESULTS: The utilization of hospital services in high-using regions is 2.3-3.6 times higher than in low-using regions. The variation was highest in 2015 and lowest in 2013. For all 3 years, hospital care was not significantly correlated with out-of-hospital care at a regional level.
CONCLUSIONS: Hospital care utilization during the last 6 months of life of patients with lung cancer shows regional medical practice variation over the course of multiple years and seems to increase. Higher healthcare utilization in hospitals does not seem to be associated with less intensive GP and long-term care. In-depth research is needed to explore the causes of the variation and its relation to quality of care provided at the level of daily practice.
OBJECTIVES: The number of older people dying in long-term care facilities (LTCFs) is increasing globally, but care quality may be variable. A framework was developed drawing on empirical research findings from the Palliative Care for Older People (PACE) study and a scoping review of literature on the implementation of palliative care interventions in LTCFs. The PACE study mapped palliative care in LTCFs in Europe, evaluated quality of end-of-life care and quality of dying in a cross-sectional study of deceased residents of LTCFs in 6 countries, and undertook a cluster-randomized control trial that evaluated the impact of the PACE Steps to Success intervention in 7 countries. Working with the European Association for Palliative Care, a white paper was written that outlined recommendations for the implementation of interventions to improve palliative and end-of-life care for all older adults with serious illness, regardless of diagnosis, living in LTCFs. The goal of the article is to present these key domains and recommendations.
DESIGN: Transparent expert consultation.
SETTING: International experts in LTCFs.
PARTICIPANTS: Eighteen (of 20 invited) international experts from 15 countries participated in a 1-day face-to-face Transparent Expert Consultation (TEC) workshop in Bern, Switzerland, and 21 (of 28 invited) completed a follow-up online survey.
METHODS: The TEC study used (1) a face-to-face workshop to discuss a scoping review and initial recommendations and (2) an online survey.
RESULTS: Thirty recommendations about implementing palliative care for older people in LTCFs were refined during the TEC workshop and, of these, 20 were selected following the survey. These 20 recommendations cover domains at micro (within organizations), meso (across organizations), and macro (at national or regional) levels addressed in 3 phases: establishing conditions for action, embedding in everyday practice, and sustaining ongoing change.
CONCLUSIONS AND IMPLICATIONS: We developed a framework of 20 recommendations to guide implementation of improvements in palliative care in LTCFs.
BACKGROUND: Frailty and palliative performance scores are 2 markers used in the measurement of functional decline in oncology and hospice care.
OBJECTIVE: To evaluate the frailty and palliative performance scores of a long-term care resident community and determine whether frailty and palliative performance scores can predict hospital readmissions (HR) and survivability of the long-term care resident.
METHODS: One hundred seventy-one long-term care residents from 2 urban facilities were evaluated for functional decline using the Clinical Frailty Scale (CFS) and Palliative Performance Scale (PPS). Sociodemographic, HR, and survival data for 1 year from study initiation were recorded.
RESULTS: The 171 long-term care residents, of lower socioeconomic status, primarily Medicare/Medicaid or dual-eligible, evaluated for functional decline using the CFS and PPS, had mean age of 73.1 years, 52.6% female, 94.7% African American, with 18.1% having HR and 87.1% surviving more than a year. There was a negative association between age and HR (P = .384). Among functional evaluation scales, CFS was positively associated with age (P = .013) but not PPS (P = .673). The residents scored 6.0 ± 1.2 on CFS and 52.8 ± 13.2 on PPS (%) with those residents readmitted to hospital having poorer outcomes. Readmission to hospital and survivability of the long-term care resident were both strongly associated with CFS (P = .001) and PPS (P = .001).
CONCLUSION: There is a strong association between the 2 markers used in the measurement of functional decline-Frailty measured by CFS and Palliative Performance Score measured by PPS. Frailty and palliative performance scores can strongly predict HR and survivability of the long-term care resident.
Background: Hospice care can improve quality of life for persons nearing end of life, yet little is known about utilization of hospice care among persons residing in long-term care facilities (LTCFs). Given the increasing number of deaths that occur in LTCFs, it is important to examine hospice care practices in LTCFs.
Aim: The aim of the cross-sectional study was to describe residents who received hospice care in LTCFs and explore factors that can predict hospice use in LTCFs across Canada. This study included 185 715 residents aged 19 years or older in LTCFs in Canada in 2015.
Results: Of all residents, 2.7% (n = 4973) received hospice care and 6.8% (n = 12 684) were profiled as having an end-stage disease. Among those who received hospice care, most were noted as end stage (89.5%) and had severe physical impairment (Activities of Daily Living Hierarchy Scale = 5, 74.3%), mild-to-severe pain (Pain Scale = 1, 76.0%), and moderate-to-severe health instability (Changes in Health, End-Stage Disease, Signs, and Symptoms Scale =3, 82.9%). Residents who received hospice care were in more severe and complex clinical conditions than those who did not receive hospice care.
Conclusion: Only a small proportion of residents in LTCFs received hospice care. Further investigation of standardized assessment of terminal status is needed as accuracy of end-stage diagnosis continues to be challenging and criteria for hospice eligibility are narrow. Special attention should be paid to improve access to hospice care among residents with dementia or other progressive chronic diseases with severe and complex clinical needs.
Background: Residents living and dying in long-term care (LTC) homes represent one of society's most frail and marginalized populations of older adults, particularly those residents with advanced dementia who are often excluded from activities that promote quality of life in their last months of life. The purpose of this study is to evaluate the feasibility, acceptability, and effects of Namaste Care: an innovative program to improve end-of-life care for people with advanced dementia.
Methods: This study used a mixed-method survey design to evaluate the Namaste Care program in two LTC homes in Canada. Pain, quality of life, and medication costs were assessed for 31 residents before and 6 months after they participated in Namaste Care. The program consisted of two 2-h sessions per day for 5 days per week. Namaste Care staff provided high sensory care to residents in a calm, therapeutic environment in a small group setting. Feasibility was assessed in terms of recruitment rate, number of sessions attended, retention rate, and any adverse events. Acceptability was assessed using qualitative interviews with staff and family.
Results: The feasibility of Namaste Care was acceptable with a participation rate of 89%. However, participants received only 72% of the sessions delivered and only 78% stayed in the program for at least 3 months due to mortality. After attending Namaste Care, participants' pain and quality of life improved and medication costs decreased. Family members and staff perceived the program to be beneficial, noting positive changes in residents. The majority of participants were very satisfied with the program, providing suggestions for ongoing engagement throughout the implementation process.
Conclusions: These study findings support the implementation of the Namaste Care program in Canadian LTC homes to improve the quality of life for residents. However, further testing is needed on a larger scale.
OBJECTIVE: Palliative care plays an essential role in enhancing the quality of life and quality of death for residents in long-term care homes (LTCHs). Access to palliative care specialists is one barrier to providing palliative care to LTCHs. This project focused on palliative telemedicine, specifically evaluating whether integration of early palliative care specialist consultation into an LTCH would be feasible through the implementation of videoconferencing during routine interdisciplinary care conferences.
METHOD: This was a mixed-methods evaluation of a pilot program implementation over 6 months, to integrate early palliative care into an LTCH. There were two pilot communities with a total of 61 residents. Resident demographics were collected by a chart review, and palliative telemedicine feasibility was evaluated using staff and family member surveys.
RESULTS: For the 61 residents, the average age of the residents was 87 years, with 61% being female and 69% having dementia as the primary diagnosis. The mean CHESS (Change in Health, End-Stage Disease, Signs, and Symptoms) and ADL (Activities of Daily Living) scores were 0.8 and 4.0, respectively, with 54% having a Palliative Performance Scale score of 40. Seventeen clinical staff surveys on palliative teleconferences were completed with the majority rating their experience as high. Ten out of the 20 family members completed the palliative teleconference surveys, and the majority were generally satisfied with the experience and were willing to use it again. Clinical staff confidence in delivering palliative care through telemedicine significantly increased (P = 0.0021).
SIGNIFICANCE OF RESULTS: The results support the feasibility of videoconferencing as a means of palliative care provision. Despite technical issues, most clinical staff and families were satisfied with the videoconference and were willing to use it again. Early integration of palliative care specialist services into an LTCH through videoconferencing also led to improved self-rated confidence in the palliative approach to care by clinical staff.
OBJECTIVES: To map out the total use of long-term care (LTC; ie, home care or institutional care) during the last 2 years of life and to investigate to what extent gender differences in LTC use were explained by cohabitation status and age at death.
DESIGN: The National Cause of Death Register was used to identify decedents. Use of LTC was based on the Social Services Register (SSR) and sociodemographic factors were provided by Statistics Sweden.
SETTING AND PARTICIPANTS: All persons living in Sweden who died in November 2015 aged =67 years (n = 5948).
METHODS: Zero inflated negative binomial regression was used to estimate the relative impact of age, gender, and cohabitation status on the use of LTC.
RESULTS: Women used LTC to a larger extent [odds ratio (OR) 2.17, 95% confidence interval (CI) 1.92-2.50] and for a longer period [risk ratio (RR) 1.14, 95% CI 1.11-1.18] than men. When controlling for age at death and cohabitation status, gender differences in LTC attenuated (OR 1.47, 95% CI 1.28-1.72) and vanished in regard to the duration. In the controlled model, women used LTC for 15.6 months (95% CI 15.2-16.0) and men for 14.1 months (95% CI 13.7-14.5) out of 24 months. The length of stay in institutional care was 7.2 (95% CI 6.8-7.5) and 6.2 months (95% CI 5.8-6.6), respectively.
CONCLUSIONS AND IMPLICATIONS: A substantial part of women's greater use of LTC was due to their higher age at death and because they more often lived alone. Given that survival continues to increase, the association between older age at death and LTC use suggests that policy makers will have to deal with an increased pressure on the LTC sector. Yet, increased survival among men could imply that more women will have access to spousal caregivers, although very old couples may have limited capacity for extensive caregiving at the end of life.
Background: People with dementia requiring palliative care have multiple needs, which are amplified in long-term care settings. The European Association for Palliative Care White Paper offers recommendations for optimal palliative care in dementia integral for this population, providing useful guidance to inform interventions addressing their specific needs.
Aim: The aim of this study is to describe the components of palliative care interventions for people with dementia in long-term care focusing on shared decision-making and examine their alignment to the European Association for Palliative Care domains of care.
Design: Systematic review with narrative synthesis (PROSPERO ID: CRD42018095649).
Data sources: Four databases (MEDLINE, CINAHL, PsycINFO and CENTRAL) were searched (earliest records – July 2019) for peer-reviewed articles and protocols in English, reporting on palliative care interventions for people with dementia in long-term care, addressing European Association for Palliative Care Domains 2 (person-centred) or 3 (setting care goals) and >=1 other domain.
Results: Fifty-one papers were included, reporting on 32 studies. For each domain (1–10), there were interventions found aiming to address its goal, although no single intervention addressed all domains. Domain 7 (symptom management; n = 19), 6 (avoiding overly aggressive treatment; n = 18) and 10 (education; n = 17) were the most commonly addressed; Domain 5 (prognostication; n = 7) and 4 (continuity of care; n = 2) were the least addressed.
Conclusion: Almost all domains were addressed across all interventions currently offered for this population to various degrees, but not within a singular intervention. Future research optimally needs to be theory driven when developing dementia-specific interventions at the end of life, with the European Association for Palliative Care domains serving as a foundation to inform the best care for this population.
BACKGROUND: The number of older people dying in long-term care facilities is increasing; however, care at the end of life can be suboptimal. Interventions to improve palliative care delivery within these settings have been shown to be effective in improving care, but little is known about their implementation.
AIM: The aim of this study was to describe the nature of implementation strategies and to identify facilitators and/or barriers to implementing palliative care interventions in long-term care facilities.
DESIGN: Scoping review with a thematic synthesis, following the ENTREQ guidelines.
DATA SOURCES: Published literature was identified from electronic databases, including MEDLINE, EMBASE, PsycINFO and CINAHL. Controlled, non-controlled and qualitative studies and evaluations of interventions to improve palliative care in long-term care facilities were included. Studies that met the inclusion criteria were sourced and data extracted on the study characteristics, the implementation of the intervention, and facilitators and/or barriers to implementation.
RESULTS: The review identified 8902 abstracts, from which 61 studies were included in the review. A matrix of implementation was developed with four implementation strategies (facilitation, education/training, internal engagement and external engagement) and three implementation stages (conditions to introduce the intervention, embedding the intervention within day-to-day practice and sustaining ongoing change).
CONCLUSION: Incorporating an implementation strategy into the development and delivery of an intervention is integral in embedding change in practice. The review has shown that the four implementation strategies identified varied considerably across interventions; however, similar facilitators and barriers were encountered across the studies identified. Further research is needed to understand the extent to which different implementation strategies can facilitate the uptake of palliative care interventions in long-term care facilities.
Les personnes hébergées en centre d'hébergement et de soins de longue durée (CHSLD) présentent des problèmes de santé complexes. Les infirmières qui oeuvrent dans ce milieu doivent désormais les accompagner dans les différentes transitions, allant de leur admission jusqu'aux soins palliatifs et de fin de vie. Les soins palliatifs offerts en CHSLD font face à une augmentation importante des taux de décès, ainsi qu'à la nécessité d'optimiser les compétences des infirmières pour répondre aux besoins des personnes qui y sont hébergées. La pratique réflexive (PR) en groupe apparaît comme une approche novatrice dont les résultats semblent positifs pour le développement des compétences professionnelles. A notre connaissance, aucune étude ne s'est intéressée à la PR dans un contexte de soins palliatifs en CHSLD. La présente étude vise donc à évaluer l'influence d'une intervention de PR en groupe sur la perception de compétence en soins palliatifs des infirmières (PCISP) en CHSLD.
Aim and objectives: The aim of this study was to explore family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities.
Background: Dementia not only affects individuals but also affects and changes the lives of close family members. An increasing number of dementia-related deaths occur in long-term care facilities; therefore, it is critical to understand how healthcare professionals support and care for residents with dementia and their families at the end of life.
Design: A qualitative design with a phenomenological approach was adopted.
Methods: In-depth interviews were performed with 10 family caregivers of residents in 3 Norwegian long-term care facilities.
Results: The family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities were characterized by responsibility and guilt. Admission to a long-term care facility became a painful relief for the family caregivers due to their experiences with the poor quality of palliative care provided. The lack of meaningful activities and unsatisfactory pain relief enhanced the feelings of responsibility and guilt among the family caregivers. Despite the feelings of insecurity regarding the treatment and care given during the early phase of the stay, the family caregivers observed that their close family member received high-quality palliative care during the terminal phase. The family caregivers wanted to be involved in the care and treatment, but some felt that it became a heavy responsibility to participate in ethical decision-making concerning life-prolonging treatment.
Conclusions: The family caregivers experienced ongoing responsibility for their close family members due to painful experiences with the poor quality of the palliative care provided. When their expectations regarding the quality of care were not met, the palliative care that was offered increased their feeling of guilt in an already high-pressure situation characterized by mistrust.
AIMS: To investigate the end-of-life nursing-care practice process in long-term care settings for older adults in Japan.
DESIGN: A qualitative study based on grounded theory developed by Corbin and Strauss.
METHODS: Sampling, interviewing and analysis were performed cyclically, with results for each stage used as the basis for data collection and next-stage analysis decisions. Semi-structured interviews were conducted from March 2015 - March 2019 with 22 nurses from eight long-term care settings. Analysis was performed using coding, constant comparison and emerging categories.
RESULTS: The core category, "guiding the rebuilt care community to assist the dying resident" comprised five categories: "assessing the resident's stage," "harmonizing care with the dying process," "rebuilding a care community," "helping community members care for the resident," and "encouraging community members to give meaning." The participants were the integral members of the care community, as well as guides who helped and encouraged the community.
CONCLUSION: Results revealed the holistic process of end-of-life nursing-care practice in Japan. Nurses aimed to allow long-term care residents to die as social human beings. Such practice requires nursing expertise, health-care skills and leadership qualities to build and serve care communities. Nurses must also consider residents' uncertainties and vulnerabilities as well as their cultural backgrounds.
Background: Research has indicated that clinical staff in long-term care often lack self-confidence in palliative care delivery, particularly at the end of life.
Goals: (a) To examine the contribution of age, palliative care education, palliative care work-related experience and psychological empowerment to palliative care delivery confidence and (b) to explore the social reality shaping those factors for long-term care staff.
Design: Explanatory sequential design.
Setting: Twenty long-term care facilities in two district health boards in New Zealand.
Participants: Phase 1:139 clinical staff. Phase 2:46 clinical staff who provided care in the last month of a residents' life.
Methods: Phase 1: Cross-sectional survey. Phase 2: Individual semi-structured interviews.
Results: Phase 1: Previous experience (ß = .319) and psychological empowerment (ß = .311) contribute most to predicting an increase in palliative care delivery confidence. Phase 2: Four factors underlay palliative care delivery confidence, (a) mentorship by hospice nurses or colleagues (b) contextual factors (organisational culture, resources and experience), (c) maturity and (d) formal education.
Conclusion: Organisational leadership should use multiple strategies (e.g. power-sharing, increased opportunities for mentorship) to improve staff palliative care delivery confidence.
Implications for Practice: This study adds to the literature in understanding the predictors of palliative care delivery confidence specific to long-term care staff. The results indicate that educational interventions must be contextually appropriate to achieve sustainable improvements in palliative care confidence and ultimately in resident care at the end of life.
Comment vieillir en Ehpad ou en USLD dans un monde étrange où il n'y a que des "vieux", où la majorité des résidents ont des troubles cognitifs ? Comment se sentir vivant, existant, malgré la fragilité et les troubles ? Comment garder une place dans la société ? Rencontrer ces personnes nous fait découvrir le monde autrement, entrer dans un autre espace-temps. Leur fragilité nous confronte à l'essentiel de la vie : être avec, dans le moment présent, authentiquement.
BACKGROUND: People with learning disability (LD) have complex comorbidities that develop at an earlier age than the general population and with which they are now living longer. Identification, assessment and management of these conditions is important but challenging.
AIM: To develop resources with care staff to enable them to recognise and manage changes and decline in the health of a person with a LD.
METHODS: Two resources (PIP-LD and CIRC) were developed through undertaking a literature review; networking with experts; and collaborating with staff in the care homes for people with a LD. Care staff then used these resourcesto review their residents.
FINDINGS: The PIP-LD and CIRC were used in 39 care homes. The PIP-LD empowered staff to meet people's immediate health needs, and the CIRC helped them to recognise changes or a decline.
CONCLUSIONS: The combined use of the PIP-LD and the CIRC enabled care staff to recognise the signs and symptoms of each person's comorbidities early, and to identify and manage changes when their health declined.