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1.
Ground Water ; 2024 Oct 11.
Artículo en Inglés | MEDLINE | ID: mdl-39392060

RESUMEN

Research into land subsidence caused by groundwater withdrawal is hindered by the availability of measured heads, subsidence, and forcings. In this paper, a parsimonious, linked data-driven and physics-based approach is introduced to simulate pumping-induced subsidence; the approach is intended to be applied at observation well nests. Time series analysis using response functions is applied to simulate heads in aquifers. The heads in the clay layers are simulated with a one-dimensional diffusion model, using the heads in the aquifers as boundary conditions. Finally, simulated heads in the layers are used to model land subsidence. The developed approach is applied to the city of Bangkok, Thailand, where relatively short time series of head and subsidence measurements are available at or near 23 well nests; an estimate of basin-wide pumping is available for a longer period. Despite the data scarcity, data-driven time series models at observation wells successfully simulate groundwater dynamics in aquifers with an average root mean square error (RMSE) of 2.8 m, relative to an average total range of 21 m. Simulated subsidence matches sparse (and sometimes very noisy) land subsidence measurements reasonably well with an average RMSE of 1.6 cm/year, relative to an average total range of 5.4 cm/year. Performance is not good at eight out of 23 locations, most likely because basin-wide pumping is not representative of localized pumping. Overall, this study demonstrates the potential of a parsimonious, linked data-driven, and physics-based approach to model pumping-induced subsidence in areas with limited data.

2.
Geriatr Nurs ; 60: 59-69, 2024 Aug 31.
Artículo en Inglés | MEDLINE | ID: mdl-39217843

RESUMEN

This exploratory interview study investigated nursing staff members' perspectives on the fundamentals of end-of-life communication with older people as part of advance care planning in home care, nursing home, and hospital settings. Separate semi-structured interviews were conducted with 17 nursing staff members about their experiences, opinions, and preferences before, during, and after end-of-life conversations. Overall themes clustering the fundamentals include preconditions such as feeling comfortable talking about the end of life and creating space for open communication. Fundamentals related to the actual conversation-such as using senses and applying associative communication techniques (e.g., using understandable language), following conversation phases, and being aware of interprofessional collaboration-were also considered important. This study emphasizes the importance of moving along with the older person as well as connecting, adapting, and letting go of control over the conversation's outcome. Many fundamentals can be traced back to the basics of nursing and the humanity of conversation.

3.
Ann Palliat Med ; 2024 Sep 20.
Artículo en Inglés | MEDLINE | ID: mdl-39308165

RESUMEN

Planning for future medical treatment, and care, referred to as advance care planning (ACP), has evolved to a focus on conversations that explore values and preferences in a broad sense. Given diverse practices internationally, we examined how international experts would define ACP themselves and whether this differs by medical profession. In an explorative study embedded in a Delphi study on ACP in dementia, experts in ACP in persons with dementia and other diseases reported at baseline how they would define ACP "in one sentence, off the top of your head". We analyzed the text of the reported definitions with content analysis, created codes to identify small definition elements, then merged them into categories. We assessed phrasing from a patient, healthcare professional, or neutral perspective. Almost half (45%) of 87 experts from 30 countries phrased ACP from a patient perspective (29% neutral, 26% professional). Codes (n=131) were merged into 19 categories. Five categories appeared in more than half of the definitions: 'Choosing between options', 'Care and treatment', 'Planning for the future', 'Individual person' and 'Having conversations'. Other categories, including 'End of life' and 'Documentation' were mentioned by a minority of experts. The categories and perspectives did not appreciably differ between physicians and other professionals. In conclusion, international experts from 30 countries typically defined ACP as person-centered conversations to choose future care and treatment, without focusing on end of life or documentation. Future research should evaluate the extent to which such conceptualization of ACP is present within clinical programs and practice recommendations and our work may serve as a starting point to monitor changes over time. Registration: World Health Organization Clinical Trial Registry Platform (NL9720).

5.
Proc Natl Acad Sci U S A ; 121(32): e2310081121, 2024 Aug 06.
Artículo en Inglés | MEDLINE | ID: mdl-39074290

RESUMEN

California faces several serious direct and indirect climate exposures that can adversely affect public health, some of which are already occurring. The public health burden now and in the future will depend on atmospheric greenhouse gas concentrations, underlying population vulnerabilities, and adaptation efforts. Here, we present a structured review of recent literature to examine the leading climate risks to public health in California, including extreme heat, extreme precipitation, wildfires, air pollution, and infectious diseases. Comparisons among different climate-health pathways are difficult due to inconsistencies in study design regarding spatial and temporal scales and health outcomes examined. We find, however, that the current public health burden likely affects thousands of Californians each year, depending on the exposure pathway and health outcome. Further, while more evidence exists for direct and indirect proximal health effects that are the focus of this review, distal pathways (e.g., impacts of drought on nutrition) are more uncertain but could add to this burden. We find that climate adaptation measures can provide significant health benefits, particularly in disadvantaged communities. We conclude with priority recommendations for future analyses and solution-driven policy actions.


Asunto(s)
Cambio Climático , Salud Pública , Humanos , California , Poblaciones Vulnerables/estadística & datos numéricos , Contaminación del Aire/análisis , Contaminación del Aire/efectos adversos , Exposición a Riesgos Ambientales/efectos adversos , Incendios Forestales
6.
Death Stud ; : 1-11, 2024 Jul 25.
Artículo en Inglés | MEDLINE | ID: mdl-39052438

RESUMEN

This study examines the reasons of people with dementia request euthanasia and how these reasons change over time with a special focus on reasons related to family. In addition, it examines how family relates to their loved one's euthanasia wish. Seven people with dementia and a euthanasia wish in the Netherlands were interviewed, and three years later, two of them and five family members were interviewed again. Four themes were identified using thematic analyses: (1) Protecting the relationship from the impact of dementia; (2) Private domain as the primary setting to discuss euthanasia; (3) Implicit expectation to respect and agree with the euthanasia wish; (4) Experienced responsibilities of family regarding the euthanasia wish. Professionals should be aware of the position of family and the interrelatedness of the person's concern for family happiness and families' moral commitment to agree and support the wish.

7.
Radiographics ; 44(7): e230176, 2024 07.
Artículo en Inglés | MEDLINE | ID: mdl-38900682

RESUMEN

Fungal musculoskeletal infections often have subacute or indolent manifestations, making it difficult to distinguish them from other diseases and infections, given that they are relatively uncommon. Fungal infections occur by hematogenous spread, direct inoculation, or contiguous extension and may be related to different risk factors, including immunosuppression and occupational activity. The infection can manifest in isolation in the musculoskeletal system or as part of a systemic process. The fungi may be endemic to certain regions or may be found throughout the world, and this can help to narrow the diagnosis of the etiologic agent. Infections such as candidiasis, cryptococcosis, aspergillosis, and mucormycosis are often related to immunosuppression. On the other hand, histoplasmosis, paracoccidioidomycosis, coccidioidomycosis, and blastomycosis can occur in healthy patients in geographic areas where these infections are endemic. Furthermore, infections can be classified on the basis of the site of infection in the body. Some subcutaneous infections that can have osteoarticular involvement include mycetoma, sporotrichosis, and phaeohyphomycosis. Different fungi affect specific bones and joints with greater prevalence. Imaging has a critical role in the evaluation of these diseases. Imaging findings include nonspecific features such as osteomyelitis and arthritis, with bone destruction, osseous erosion, mixed lytic and sclerotic lesions, and joint space narrowing. Multifocal osteomyelitis and chronic arthritis with joint effusion and synovial thickening may also occur. Although imaging findings are often nonspecific, some fungal infections may show findings that aid in narrowing the differential diagnosis, especially when they are associated with the patient's clinical condition and history, the site of osteoarticular involvement, and the geographic location. ©RSNA, 2024.


Asunto(s)
Micosis , Humanos , Micosis/diagnóstico por imagen , Diagnóstico Diferencial , Enfermedades Musculoesqueléticas/diagnóstico por imagen
8.
J Adv Nurs ; 2024 Jun 24.
Artículo en Inglés | MEDLINE | ID: mdl-38923055

RESUMEN

AIMS: To describe the co-creation of the 'Desired Dementia Care Towards End of Life' (DEDICATED) approach to improve person-centred palliative care for individuals with dementia and to describe the experiences of healthcare professionals during the approach's implementation. METHODS: A needs assessment, comprising both qualitative and quantitative studies, informed palliative care needs of healthcare professionals, family caregivers and individuals with dementia. The approach was co-created with healthcare and education professionals, guided by the findings. Then, healthcare professionals were trained to implement the approach in their organizations. From April to June 2022, semi-structured interviews with actively engaged professionals were analysed using Conventional Content Analysis. RESULTS: The needs assessment yielded six key themes: (1) raising palliative care awareness, (2) familiarization with a person with dementia, (3) communication about future care preferences, (4) managing pain and responsive behaviour, (5) enhancing interprofessional collaboration in advance care planning and (6) improving interprofessional collaboration during transitions to nursing homes. Interviews with 17 healthcare professionals revealed that active involvement in co-creating or providing feedback facilitated implementation. Overall, the DEDICATED approach was perceived as a valuable toolkit for optimizing palliative care for people with dementia and their loved ones. CONCLUSION: Co-creating the DEDICATED approach with healthcare professionals facilitated implementation in daily practice. The approach was considered helpful in enhancing person-centred palliative dementia care. IMPACT STATEMENT: This study underscores the importance of active involvement of healthcare professionals in the research and development of new interventions or tools for palliative care, which can influence the successful implementation, dissemination and sustained usage of the developed tools. IMPLICATIONS FOR THE PROFESSION AND PATIENT CARE: The developed approach can improve person-centred palliative care for individuals with dementia, ultimately improving their quality of life and that of their loved ones. REPORTING METHOD: This study used the Consolidated Criteria for Reporting Qualitative Research. PATIENT OF PUBLIC CONTRIBUTION: No patient or public contribution.

10.
J Pain Symptom Manage ; 68(3): e206-e227, 2024 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-38848792

RESUMEN

BACKGROUND: Palliative care is recommended for all people with dementia from diagnosis through end-of-life. However, palliative care needs and effective elements of palliative care are not well-defined for the earlier stages of dementia. OBJECTIVE: To systematically map current research on palliative care early in the disease trajectory of dementia. DESIGN: Scoping review of scientific literature. DATA SOURCES: PubMed, CINAHL, EMBASE, Cochrane, PsycINFO, Web of Science. REVIEW METHODS: We included studies published in English over the last decade (through March 2022) that focused on palliative care in early stages of dementia and targeted outcomes in palliative care domains. Two authors independently screened abstracts and full texts and scored the quality of included studies using tools by the Joanna Briggs Institute. RESULTS: Among the 77 papers reviewed, few addressed early stages of dementia specifically. We found that: 1) While "early" palliative care was not well-defined in the literature, evidence indicated that palliative care needs were present at or before diagnosis and across the trajectory. Notable opportunities for palliative care arise at 'tipping points' (i.e., when symptoms, functional status, or caregiving needs change). 2) Palliative care needs in early dementia include advocacy for goal-aligned care in the future, reassurance against the threat of negligence and abandonment by caregivers, planning for future scenarios of care (practical, individual, and relational needs), and establishing of long-term relationships with providers entrusted for care later in disease. 3) Elements of effective palliative care in early dementia could include dementia-specific ACP and goals of care discussions, navigation for building a network of support, provision of tools and resources for family, tailored care and knowledge of the person, and well-prepared dementia-care providers. The scarcity of palliative care studies aimed at early disease indicates a gap in the evidence in dementia care. CONCLUSION: The literature on palliative care in early dementia is sparse. Future studies should focus on assessment tools for optimizing timing of palliative care in early dementia, gaining better understanding of patient and family needs during early phases of disease, and providing training for providers and families in long-term relationships and communication around goals of care and future planning.


Asunto(s)
Demencia , Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Demencia/terapia
11.
Int J Geriatr Psychiatry ; 39(5): e6103, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38761159

RESUMEN

OBJECTIVES: Cognitive impairment, pain and depressive symptoms are common and interrelated factors in older adults. However, the directionality and specificity of their association remains unclarified. This study explored whether these factors prospectively increase reciprocal risk and examined the longitudinal association between these factors and quality of life (QoL). METHODS: This study used longitudinal data from The Older Persons and Informal Caregivers Survey Minimal Data Set (TOPICS-MDS; the Netherlands). Older adults self-reported cognitive impairment, pain, depressive symptoms and QoL at baseline and after 6 and 12 months of follow-up. The Random Intercept Cross-Lagged Panel Model was used to assess the prospective association between the three factors, while a multilevel linear regression analysis in a two-level random intercept model was used to examine the longitudinal associations between the three factors and QoL at the within-person level. RESULTS: The data of 11,582 home-dwelling older adults with or without subjective cognitive impairment were analysed. At the within-person level, pain at 6 months was associated with subsequent depressive symptoms (ß = 0.04, p = 0.024). The reverse association from depression to pain, and longitudinal associations between pain and subjective cognitive impairment and between depressive symptoms and subjective cognitive impairment were non-significant. Pain, depressive symptoms and subjective cognitive impairment showed a significant association with poor QoL 6 months later. CONCLUSIONS: A directional relationship was observed from pain to depressive symptoms. Pain reduction holds a potential benefit in the prevention of depressive symptoms, ultimately optimising the QoL of older adults.


Asunto(s)
Disfunción Cognitiva , Dolor , Calidad de Vida , Humanos , Anciano , Masculino , Femenino , Estudios Longitudinales , Anciano de 80 o más Años , Calidad de Vida/psicología , Países Bajos/epidemiología , Dolor/psicología , Disfunción Cognitiva/psicología , Disfunción Cognitiva/epidemiología , Depresión/psicología , Depresión/epidemiología , Vida Independiente , Trastorno Depresivo/epidemiología , Trastorno Depresivo/psicología , Estudios Prospectivos
12.
Lancet Healthy Longev ; 5(5): e370-e378, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38608695

RESUMEN

Advance care planning (ACP) is increasingly recognised in the global agenda for dementia care. The European Association for Palliative Care (EAPC) Taskforce on ACP in Dementia aimed to provide recommendations for policy initiatives and future research. We conducted a four-round Delphi study with a 33-country panel of 107 experts between September, 2021, and June, 2022, that was approved by the EAPC Board. Consensus was achieved on 11 recommendations concerning the regulation of advance directives, equity of access, and dementia-inclusive approaches and conversations to express patients' values. Identified research gaps included the need for an evidence-based dementia-specific practice model that optimises engagement and communication with people with fluctuating and impaired capacity and their families to support decision making, while also empowering people to adjust their decisions if their goals or preferences change over time. Policy gaps included insufficient health services frameworks for dementia-inclusive practice. The results highlight the need for more evidence and policy development that support inclusive ACP practice models.


Asunto(s)
Planificación Anticipada de Atención , Consenso , Técnica Delphi , Demencia , Cuidados Paliativos , Humanos , Planificación Anticipada de Atención/organización & administración , Directivas Anticipadas , Demencia/terapia , Europa (Continente) , Política de Salud
13.
Palliat Med ; 38(4): 457-470, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38634232

RESUMEN

BACKGROUND: Advance care planning in dementia includes supporting the person and their family to consider important goals of care. International research reports the importance of psycho-social-spiritual aspects towards end of life. AIM: To develop a multidimensional international palliative care goals model in dementia for use in practice. DESIGN: International Delphi study integrating consensus and evidence from a meta-qualitative study. The Delphi panel rated statements about the model on a 5-point agreement scale. The criteria for consensus were pre-specified. SETTING/PARTICIPANTS: Seventeen researchers from eight countries developed an initial model, and 169 candidate panellists were invited to the international online Delphi study. RESULTS: Panellists (107; response 63.3%) resided in 33 countries. The model comprised four main care goals: (1) Comfort ensured; (2) Control over function maintained; (3) Identity protected and personhood respected and (4) Coping with grief and loss-person and caregiver supported. The model reflects how needs and care goals change over time with the progression of dementia, concluding with bereavement support. The first version of the model achieved a consensus after which it was slightly refined based on feedback. We did not achieve a consensus on adding a goal of life prolongation, and on use of the model by people with dementia and family themselves. CONCLUSION: A new palliative care goals model for people with dementia and their families includes relationship aspects for use by professionals and achieved a consensus among a panel with diverse cultural background. The position of life prolongation in relation to palliative care goals needs further research.


Asunto(s)
Planificación Anticipada de Atención , Demencia , Humanos , Cuidados Paliativos , Consenso , Objetivos , Técnica Delphi
14.
Alzheimers Dement (Amst) ; 16(1): e12531, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38496715

RESUMEN

We comment on Dr. Terman's considerations on the moral justification of ceasing assisted feeding and hydration for people with advanced dementia. The core idea of his paper is that an advance directive can solve future dilemmas regarding assisted feeding. We submit that this static instrument is unfit for the complex and dynamic nature of assessing how to deal with refusals to eat, in particular for people with dementia. It overvalues the past in relation to the present situation and leaves no room for the possibility of changing wishes. Moreover, the perspectives of professional caregivers and families are not addressed because the focus is entirely on individual autonomy in early dementia. Multiple perspectives should be considered in interpreting directives and the actual situation in light of the patient's view of life in order to realistically account for what is morally justifiable in care in advanced dementia.

15.
Alzheimers Dement (Amst) ; 16(1): e12536, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38496722

RESUMEN

Broadening the concept of suffering in dementia to five types of suffering including suffering of family caregivers as proposed by Terman et al., may help raise awareness on a need to relieve suffering when living with dementia and adopt a holistic approach. However, as objective criteria in advance care plans for severe enough suffering to stop assisted feeding or other life-sustaining treatment in people with advanced dementia, these still need interpretation in the context of, for example, available treatment, and change in coping. New is the proposal to broaden severe enough suffering to suffering of family, including "bi-directional empathic suffering." We believe this creates new dilemmas regarding responsibility and may increase feelings of guilt. Quantifying suffering by adding up moderate suffering could further complicate matters. Therefore, we argue that a health care professional should guide the process and assume responsibility over current decisions to follow a person's previous wishes.

16.
BMC Palliat Care ; 23(1): 78, 2024 Mar 21.
Artículo en Inglés | MEDLINE | ID: mdl-38515049

RESUMEN

BACKGROUND: Discomfort and distressing symptoms are common at the end of life, while people in this stage are often no longer able to express themselves. Technologies may aid clinicians in detecting and treating these symptoms to improve end-of-life care. This review provides an overview of noninvasive monitoring technologies that may be applied to persons with limited communication at the end of life to identify discomfort. METHODS: A systematic search was performed in nine databases, and experts were consulted. Manuscripts were included if they were written in English, Dutch, German, French, Japanese or Chinese, if the monitoring technology measured discomfort or distressing symptoms, was noninvasive, could be continuously administered for 4 hours and was potentially applicable for bed-ridden people. The screening was performed by two researchers independently. Information about the technology, its clinimetrics (validity, reliability, sensitivity, specificity, responsiveness), acceptability, and feasibility were extracted. RESULTS: Of the 3,414 identified manuscripts, 229 met the eligibility criteria. A variety of monitoring technologies were identified, including actigraphy, brain activity monitoring, electrocardiography, electrodermal activity monitoring, surface electromyography, incontinence sensors, multimodal systems, and noncontact monitoring systems. The main indicators of discomfort monitored by these technologies were sleep, level of consciousness, risk of pressure ulcers, urinary incontinence, agitation, and pain. For the end-of-life phase, brain activity monitors could be helpful and acceptable to monitor the level of consciousness during palliative sedation. However, no manuscripts have reported on the clinimetrics, feasibility, and acceptability of the other technologies for the end-of-life phase. CONCLUSIONS: Noninvasive monitoring technologies are available to measure common symptoms at the end of life. Future research should evaluate the quality of evidence provided by existing studies and investigate the feasibility, acceptability, and usefulness of these technologies in the end-of-life setting. Guidelines for studies on healthcare technologies should be better implemented and further developed.


Asunto(s)
Cuidado Terminal , Humanos , Comunicación , Muerte , Dolor , Reproducibilidad de los Resultados
17.
BMC Geriatr ; 24(1): 290, 2024 Mar 27.
Artículo en Inglés | MEDLINE | ID: mdl-38539079

RESUMEN

BACKGROUND: Dementia is often associated with Neuropsychiatric Symptoms (NPS) such as agitation, depression, hallucinations, anxiety, that can cause distress for the resident with dementia in long-term care settings and can impose emotional burden on the environment. NPS are often treated with psychotropic drugs, which, however, frequently cause side effects. Alternatively, non-pharmacological interventions can improve well-being and maintain an optimal quality of life (QoL) of those living with dementia. Other QoL related outcomes, such as pain, discomfort and sleep disruption are relevant outcomes in music trials as well. Music therapy is a non-pharmacological intervention that can reduce NPS and improve well-being, and its associated symptoms in dementia. METHODS: The research will be conducted at eight nursing home facilities of a health care organization in the Netherlands. A sample size of 30 in each group (experimental and control group) is required, totalling 60 residents increased to 80 when considering expected drop out to follow up. The participants in the intervention group receive 30 min of individual music therapy (MT) in their own room by a music therapist twice a week for 12 weeks. The participants in the control group will receive 30 min of individual attention in their own room by a volunteer twice a week for 12 weeks. Assessments will be done at baseline, 6 weeks and 12 weeks. An independent observer, blinded for the intervention or control condition, will assess directly observed well-being (primary outcome) and pain (secondary outcome) before and after the sessions. Nurses will assess other secondary outcomes unblinded, i.e., perceived quality of life and NPS, both assessed with validated scales. The sleep duration will be indirectly assessed by a wrist device called MotionWatch. Information about psychotropic drug use will be derived from electronic medical chart review. DISCUSSION: The main purpose of this study is to assess the effects of individual music therapy on directly observed well-being controlled for individual attention in nursing home residents with dementia with NPS. The outcomes refer to both short-term and long-term effects consistent with therapeutic goals of care for a longer term. We hope to overcome limitations of previous study designs such as not blinded designs and music facilitators that were not only music therapists but also occupational therapists and nurses. This study should lead to more focused recommendations for practice and further research into non-pharmacological interventions in dementia such as music therapy. TRIAL REGISTRATION: The trial is registered at the International Clinical Trials Registry Platform (ICTRP) search portal in the Netherlands Trial Registration number NL7708, registration date 04-05-2019.


Asunto(s)
Demencia , Musicoterapia , Música , Humanos , Calidad de Vida , Demencia/psicología , Casas de Salud , Dolor , Ensayos Clínicos Controlados Aleatorios como Asunto
18.
Q J Exp Psychol (Hove) ; : 17470218241236711, 2024 Mar 15.
Artículo en Inglés | MEDLINE | ID: mdl-38383282

RESUMEN

Stimuli associated with rewards can acquire the ability to capture our attention independently of our goals and intentions. Here, we examined whether attentional prioritisation of reward-related cues is sensitive to changes in the value of the reward itself. To this end, we incorporated an instructed outcome devaluation (Experiment 1a), "super-valuation" (Experiment 1b), or value switch (Experiment 2) into a visual search task, using eye-tracking to examine attentional prioritisation of stimuli signalling high- and low-value rewards. In Experiments 1a and 1b, we found that prioritisation of high- and low-value stimuli was insensitive to devaluation of a previously high-value outcome, and super-valuation of a previously low-value outcome, even when participants were provided with further experience of receiving that outcome. In Experiment 2, following a value-switch manipulation, we found that prioritisation of a high-value stimulus could not be overcome with knowledge of the new values of outcomes alone. Only when provided with further experience of receiving the outcomes did patterns of attentional prioritisation of high- and low-value stimuli switch, in line with the updated values of the outcomes they signalled. To reconcile these findings, we suggest that participants were motivated to engage in effortful updating of attentional control settings when there was a relative difference between reward values at test (Experiment 2) but that previous settings were allowed to persist when both outcomes had the same value at test (Experiments 1a and 1b). These findings provide a novel framework to further understand the role of cognitive control in driving reward-modulated attention and behaviour.

19.
Gerontologist ; 64(6)2024 06 01.
Artículo en Inglés | MEDLINE | ID: mdl-38349015

RESUMEN

BACKGROUND AND OBJECTIVES: The inability of individuals in the advanced stage of dementia to communicate about preferences in care at the end-of-life poses a challenge for healthcare professionals and family carers. The proven effective Family Carer Decision Support intervention has been designed to inform family carers about end-of-life care options available to a person living with advanced dementia. The objectives of the mySupport study were to adapt the application of the intervention for use in different countries, assess impact on family satisfaction and decision-making, and identify costs and supportive conditions for the implementation of the intervention. RESEARCH DESIGN AND METHODS: A multiple-case study design was chosen where the nursing home was the case. Nursing homes were enrolled from six countries: Canada, Czech Republic, Italy, Netherlands, Republic of Ireland, and United Kingdom. RESULTS: Seventeen cases (nursing homes) participated, with a total of 296 interviews completed including family carers, nursing home staff, and health providers. Five themes relevant to the implementation of the intervention were identified: supportive relationships; committed staff; perceived value of the intervention; the influence of external factors on the nursing home; and resource impact of delivery. DISCUSSION AND IMPLICATIONS: There is a commonality of facilitators and barriers across countries when introducing practice innovation. A key learning point was the importance of implementation being accompanied by committed and supported nursing home leadership. The nursing home context is dynamic and multiple factors influence implementation at different points of time.


Asunto(s)
Planificación Anticipada de Atención , Cuidadores , Demencia , Casas de Salud , Humanos , Casas de Salud/organización & administración , Cuidadores/psicología , Cuidado Terminal , República Checa , Canadá , Países Bajos , Italia , Reino Unido , Masculino , Anciano , Toma de Decisiones , Femenino , Irlanda
20.
J Alzheimers Dis ; 97(2): 573-586, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38217594

RESUMEN

BACKGROUND: The evidence underpinning palliative care in dementia is mostly based on research in older populations. Little is known about the palliative care needs of people with young-onset dementia (YOD). OBJECTIVE: To describe palliative care practices including advance care planning (ACP) in people with YOD residing in Dutch nursing homes. METHODS: The study presents baseline questionnaire data from an observational cohort study. Physicians, family caregivers, and nursing staff completed questionnaires about 185 residents with YOD. The questionnaires included items on sociodemographics, quality of life measured with the quality of life in late-stage dementia (QUALID) scale, dementia-related somatic health problems, symptoms, pain medication, psychotropic drugs, and ACP. RESULTS: The mean age was 63.9 (SD 5.8) years. Half (50.3%) of them were female. Alzheimer's disease dementia (42.2%) was the most prevalent subtype. The mean QUALID score was 24.0 (SD 7.9) as assessed by family caregivers, and 25.3 (SD 8.6) as assessed by the nursing staff. Swallowing problems were the most prevalent dementia-related health problem (11.4%). Agitation was often reported by physicians (42.0%) and nursing staff (40.5%). Psychotropics were prescribed frequently (72.3%). A minority had written advance directives (5.4%) or documentation on treatment preferences by the former general practitioner (27.2%). Global care goals most often focused on comfort (73.9%). Proportions of do-not-treat orders were higher than do-treat orders for all interventions except for hospitalization and antibiotics. CONCLUSIONS: ACP must be initiated earlier, before nursing home admission. A palliative approach seems appropriate even though residents are relatively young and experience few dementia-related health problems.


Asunto(s)
Enfermedad de Alzheimer , Demencia , Humanos , Femenino , Anciano , Masculino , Cuidados Paliativos , Cuidadores , Calidad de Vida , Demencia/epidemiología , Demencia/terapia , Casas de Salud
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