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1.
BMC Geriatr ; 23(1): 677, 2023 10 19.
Artículo en Inglés | MEDLINE | ID: mdl-37858076

RESUMEN

BACKGROUND: Living with a life-limiting illness, people with dementia benefit from palliative care which considers the holistic needs of the person and their family. However, little is known about how palliative care may be best provided to people living with dementia at home in the community. We examined four exemplary dementia palliative care services for people with dementia in the community, to see what activities they were providing, what were the commonalities and differences, and what lessons could be learned. METHODS: A long-list of dementia palliative care services in Ireland, Northern Ireland, England, Scotland, and Wales, was identified through a survey, and four exemplar services were chosen based on criteria including: in operation >six months; provides identifiable activities; availability of routinely collected service data; not exclusively for people with dementia in final hours or days of life. Mixed-methods of data collection included interviews, focus-groups and surveys with service staff, surveys of service users, and routinely collected service data. The RE-AIM framework was used to describe and understand the sample of dementia palliative care services. RESULTS: The four services had varied organisational structures and were led by different disciplines. However, they all provided common core activities including holistic and person-centred care, early advance care planning with service user involvement, carer support, integrated healthcare services, continuity of care, 24/7 support, bereavement support. All had needs-based referral criteria, accepting any age or dementia sub-type. All supported people with dementia to remain living at home and to have a comfortable, dignified death in their preferred place. CONCLUSIONS: An effective dementia palliative care service may take different forms. Whether the service is dementia-led or Specialist Palliative Care-led, efficacy is associated with providing a range of key activities and implementing them effectively. The data collected strongly suggests the benefits of the dementia palliative care services to a person with dementia and their families and offers valuable insight into the key factors for the establishment and successful running of such services.


Asunto(s)
Demencia , Cuidado Terminal , Humanos , Cuidados Paliativos/métodos , Demencia/epidemiología , Demencia/terapia , Cuidadores , Cuidado Terminal/métodos , Inglaterra
2.
Handb Clin Neurol ; 191: 81-105, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36599517

RESUMEN

Dementia is the most common neurologic disease, affecting approximately 55 million people worldwide. Dementia is a terminal illness, although not always recognized as such. This chapter discusses the key issues in providing palliative care for people with living with dementia and their families. Common palliative care needs and symptoms are presented, including psychosocial, physical, emotional, and spiritual, and the need to actively anticipate and seek symptoms according to the dementia type and stage is emphasized. Families are hugely impacted by a dementia diagnosis, and throughout this chapter, they are considered in the unit of care, and also as a member of the care team. Multiple challenges particular to dementia palliative care are highlighted throughout, such as the lack of timely dementia diagnoses, difficulty with symptom prognostication, the person's inability to verbally express their symptoms and care preferences, and a low threshold for medication side effects. Finally, service models for dementia palliative care in community, residential, and acute hospital settings are discussed, along with the evidence for each. Overall, this chapter reinforces that the individual needs of the person living with dementia and their family must be considered to provide person-centered and comprehensive palliative care, enabling them to live well until death.


Asunto(s)
Demencia , Cuidado Terminal , Humanos , Cuidados Paliativos/psicología , Familia/psicología , Calidad de Vida/psicología , Demencia/terapia , Cuidado Terminal/psicología
3.
BMC Palliat Care ; 21(1): 117, 2022 Jul 01.
Artículo en Inglés | MEDLINE | ID: mdl-35778712

RESUMEN

BACKGROUND: Blogging can help to maximise the impact of one's work in academia and beyond by making research findings accessible for multiple knowledge users, such as healthcare professionals and the public, as well as other researchers. As part of the knowledge exchange and dissemination activities of the Model for Dementia Palliative Care Project, this study explored stakeholders' views of blogs as a means to translate research findings. METHODS: A web-based survey was developed, piloted, and revised. It was distributed electronically via key dementia and palliative care organisations websites, newsletters, social media platforms, and within the staff mailing lists of five Universities in Ireland. Data were analysed using descriptive statistics and content analysis. RESULTS: Complete responses were received from 128 participants. The majority of respondents were healthcare researchers (n = 53), followed by healthcare providers (n = 46). The preferred methods of reviewing research findings were scientific papers, websites and news articles. Respondents read healthcare blogs "sometimes" (39.1%), with < 19% reading them "often" or "very often". Receiving an email notification might increase the likelihood of reading a new blog post for 83% of respondents. Barriers to engaging with blogs included lack of time, preference for other media, lack of awareness regarding available blogs, and concerns about the credibility and source of information. An appropriate length and the author of the blog were key features that encouraged engagement with a blog. CONCLUSIONS: Despite respondents choosing a scientific paper as their preferred method to consume research findings, many indicated an openness to reading blogs on their area of interest. Creating concise, relevant, and credible blogs, and suitably promoting them, could increase the impact and reach of healthcare research, such as in the emerging field of dementia palliative care, and thus promote translation of research findings into practice.


Asunto(s)
Demencia , Enfermería de Cuidados Paliativos al Final de la Vida , Blogging , Demencia/terapia , Humanos , Cuidados Paliativos , Encuestas y Cuestionarios
4.
Int J Older People Nurs ; 17(5): e12460, 2022 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-35362252

RESUMEN

BACKGROUND: Dementia affects a large proportion of society and places a significant burden on older people and healthcare systems internationally. Managing symptoms at the end of life for people with dementia is complex. Participatory action research can offer an approach that helps to encourage implementation of evidence-based practices in long-term care settings. METHODS: Three evidence-based guidance documents (pain assessment and management, medication management, nutrition and hydration management) were introduced in three long-term care settings for older people. Data generated from work-based learning groups were analysed using a critical hermeneutic approach to explore the use of participatory action research to support the implementation of guidance documents in these settings. RESULTS: Engagement and Facilitation emerged as key factors which both enabled and hindered the PAR processes at each study site. CONCLUSIONS: This study adds to the body of knowledge that emphasises the value of participatory action research in enabling practice change. It further identifies key practice development approaches that are necessary to enable a PAR approach to occur in care settings for older people with dementia. The study highlights the need to ensure that dedicated attention is paid to strategies that facilitate key transformations in clinical practice.


Asunto(s)
Demencia , Cuidados a Largo Plazo , Anciano , Investigación sobre Servicios de Salud , Hermenéutica , Humanos , Cuidados Paliativos
5.
Age Ageing ; 51(3)2022 03 01.
Artículo en Inglés | MEDLINE | ID: mdl-35333919

RESUMEN

Older people with dementia have multiple palliative care needs, with pain, agitation, dyspnoea, aspiration and pressure ulcers being common and persistent in advanced dementia. Anticipating the person's possible symptoms requires knowledge of the whole person, including the type of dementia, which is problematic when the dementia type is often not documented. A palliative care approach to dementia should look at symptoms across the four pillars of palliative care, but in reality, we tend to over-focus on physical and psychological symptoms, while spiritual and emotional needs can be overlooked, especially around the time of diagnosis, where such needs may be significant. Advance care planning (ACP) is a central tenet of good dementia palliative care, as the person may lose their ability to communicate and make complex decisions over time. Despite this, care planning is often approached too late, and with the person's family rather than with the person; much of the literature on ACP in dementia is based on proxy decision-making for people in residential care. Thus, we need a paradigm shift in how we approach dementia, beginning with timely diagnosis that includes the dementia type, and with services able to assess and meet emotional and spiritual needs especially around the time of diagnosis, and with timely ACP as an integral part of our overall approach.


Asunto(s)
Planificación Anticipada de Atención , Demencia , Directivas Anticipadas , Anciano , Demencia/diagnóstico , Demencia/psicología , Demencia/terapia , Humanos , Dolor , Cuidados Paliativos
6.
BMC Palliat Care ; 21(1): 32, 2022 Mar 09.
Artículo en Inglés | MEDLINE | ID: mdl-35264118

RESUMEN

BACKGROUND: Palliative care is identified internationally as a priority for efficacious dementia care. Research into "effective models" of palliative care for people with dementia has been recommended by several European countries. To build an effective service-delivery model we must gain an understanding of existing models used in similar settings. The study aim is to identify core components of extant models of palliative care for people with dementia, and their families, who are living at home in the community. METHODS: A scoping review was employed. The search strategy was devised to identify all peer-reviewed research papers relating to the above aim. This process was iterative, and the search strategy was refined as evidence emerged and was reviewed. All types of study designs and both quantitative and qualitative studies of non-pharmacological interventions were considered for inclusion. RESULTS: The search identified 2,754 unique citations, of which 18 papers were deemed eligible for inclusion. Although a palliative care approach is recommended from early in the disease process, most evidence involves end-of-life care or advanced dementia and pertains to residential care. The majority of the research reviewed focused on the effects of advance care planning, and end-of-life care; specialist palliative care input, and/or generalist palliative care provided by dementia services to enable people to remain at home and to reduce costs of care. Community staff training in palliative care appeared to improve engagement with Specialist Palliative Care teams. Integration of dementia and palliative care services was found to improve care received for people with dementia and their carers. CONCLUSIONS: While the evidence for integration of dementia and palliative care services is promising, further high-quality research is necessary particularly to identify the key components of palliative care for people living with dementia. This is imperative to enable people with dementia to inform their own care, to stay living at home for as long as possible, and, where appropriate, to die at home.


Asunto(s)
Demencia , Cuidado Terminal , Cuidadores , Servicios de Salud Comunitaria , Demencia/terapia , Humanos , Cuidados Paliativos
7.
Artículo en Inglés | MEDLINE | ID: mdl-35162397

RESUMEN

BACKGROUND: Prompt and efficient identification and stratification of patients who are frail is important, as this cohort are at high risk of adverse healthcare outcomes. Numerous frailty screening tools have been developed to support their identification across different settings, yet relatively few have emerged for use in emergency departments (EDs). This protocol provides details for a systematic review aiming to synthesize the accumulated evidence regarding the diagnostic accuracy and clinimetric properties of frailty screening instruments to identify frail older adults in EDs. METHODS: Six electronic databases will be searched from January 2000 to March 2021. Eligible studies will include adults aged ≥60 years screened in EDs with any available screening instrument to identify frailty (even if not originally designed for this purpose). Studies, including case-control, longitudinal, and cohort studies, will be included, where instruments are compared to a reference standard to explore diagnostic accuracy. Predictive accuracy for a selection of outcomes, including mortality, institutionalization, and readmission, will be assessed. Clinical and methodological heterogeneity will be examined, and a random effects meta-analysis performed if appropriate. CONCLUSION: Understanding whether frailty screening on presentation to EDs is accurate in identifying frailty, and predicting these outcomes is important for decision-making and targeting appropriate management.


Asunto(s)
Anciano Frágil , Fragilidad , Anciano , Servicio de Urgencia en Hospital , Fragilidad/diagnóstico , Evaluación Geriátrica/métodos , Humanos , Tamizaje Masivo , Metaanálisis como Asunto , Persona de Mediana Edad , Revisiones Sistemáticas como Asunto
8.
Annu Int Conf IEEE Eng Med Biol Soc ; 2021: 1848-1851, 2021 11.
Artículo en Inglés | MEDLINE | ID: mdl-34891647

RESUMEN

Cancer is an aggressive disease which imparts a tremendous socio-economic burden on the international community. Early detection is an important aspect in improving survival rates for cancer sufferers; however, very few studies have investigated the possibility of predicting which people have the highest risk to develop this disease, even years before the traditional symptoms first occur. In this paper, a dataset from a longitudinal study which was collected among 2291 70-year olds in Sweden has been analyzed to investigate the possibility for predicting 2-7 year cancer-specific mortality. A tailored ensemble model has been developed to tackle this highly imbalanced dataset. The performance with different feature subsets has been investigated to evaluate the impact that heterogeneous data sources may have on the overall model. While a full-features model shows an Area Under the ROC Curve (AUC-ROC) of 0.882, a feature subset which only includes demographics, self-report health and lifestyle data, and wearable dataset collected in free-living environments presents similar performance (AUC-ROC: 0.857). This analysis confirms the importance of wearable technology for providing unbiased health markers and suggests its possible use in the accurate prediction of 2-7 year cancer-related mortality in older adults.


Asunto(s)
Neoplasias , Dispositivos Electrónicos Vestibles , Anciano , Biomarcadores , Humanos , Estudios Longitudinales , Neoplasias/diagnóstico , Autoinforme
9.
Ann Palliat Med ; 9(Suppl 1): S34-S43, 2020 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-32146821

RESUMEN

BACKGROUND: A diagnosis of Parkinson's disease (PD) has a significant psychological impact on both the person diagnosed and their loved ones, and can have a negative effect on family relationships. Caring for someone with a long-term progressing illness may cause anticipatory grief, i.e., experienced before a bereavement. This has been widely studied in illnesses such as dementia and cancer, but less so in relation to PD. The study aims were: (I) to demonstrate the occurrence of anticipatory grief experienced by carers of people with PD; (II) to explore how this grief relates to caregiver burden and caregiver depression and demographic variables. METHODS: Family carers of people with moderate to advanced PD (Hoehn & Yahr stages 3-5) were invited to complete a survey, including demographic questions and three questionnaires: Zarit Burden Interview (ZBI); 16-item Geriatric Depression Scale (GDS); and Anticipatory Grief Scale (AGS). RESULTS: Anticipatory grief was common among carers of people with PD [mean AGS score =70.41; standard deviation (SD) =16.93; sample range, 38-102]. Though distinct concepts, carers with higher burden and depression scores also experienced more anticipatory grief symptoms. Carers experiencing higher anticipatory grief tended to be caring for someone of a younger age, displaying more non-motor symptoms, at a more advanced disease stage, and who considered either themselves and/or their loved one as depressed. CONCLUSIONS: Carers of people with advanced PD experienced anticipatory grief, as well as depression and a high caregiver burden. To improve carer outcomes, our focus should include the period both before and after the death of a loved one, and carers should receive regular psychological assessment and support.


Asunto(s)
Cuidadores/psicología , Pesar , Enfermedad de Parkinson/psicología , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Cuidados Paliativos , Encuestas y Cuestionarios
10.
Neurogastroenterol Motil ; 32(1): e13726, 2020 01.
Artículo en Inglés | MEDLINE | ID: mdl-31576631

RESUMEN

BACKGROUND: A hallmark feature of Parkinson's disease (PD) is the build-up of α-synuclein protein aggregates throughout the brain; however α-synuclein is also expressed in enteric neurons. Gastrointestinal (GI) symptoms and pathology are frequently reported in PD, including constipation, increased intestinal permeability, glial pathology, and alterations to gut microbiota composition. α-synuclein can propagate through neuronal systems but the site of origin of α-synuclein pathology, whether it be the gut or the brain, is still unknown. Physical exercise is associated with alleviating symptoms of PD and with altering the composition of the gut microbiota. METHODS: This study investigated the effects of bilateral nigral injection of adeno-associated virus (AAV)-α-synuclein on enteric neurons, glia and neurochemistry, the gut microbiome, and bile acid metabolism in rats, some of whom were exposed to voluntary exercise. KEY RESULTS: Nigral overexpression of α-synuclein resulted in significant neuronal loss in the ileal submucosal plexus with no change in enteric glia. In contrast, the myenteric plexus showed a significant increase in glial expression, while neuronal numbers were maintained. Concomitant alterations were observed in the gut microbiome and related bile acid metabolism. Voluntary running protected against neuronal loss, increased enteric glial expression, and modified gut microbiome composition in the brain-injected AAV-α-synuclein PD model. CONCLUSIONS AND INFERENCES: These results show that developing nigral α-synuclein pathology in this PD model exerts significant alterations on the enteric nervous system (ENS) and gut microbiome that are receptive to modification by exercise. This highlights brain to gut communication as an important mechanism in PD pathology.


Asunto(s)
Sistema Nervioso Entérico/patología , Microbioma Gastrointestinal , Trastornos Parkinsonianos , Sustancia Negra/metabolismo , alfa-Sinucleína/toxicidad , Animales , Vectores Genéticos , Humanos , Inyecciones Intraventriculares , Masculino , Ratas , Ratas Sprague-Dawley , Ratas Transgénicas , Transfección , alfa-Sinucleína/administración & dosificación
11.
BMC Palliat Care ; 17(1): 9, 2017 Jul 14.
Artículo en Inglés | MEDLINE | ID: mdl-28705196

RESUMEN

BACKGROUND: Dementia is the most common neurological disorder worldwide and is a life-limiting condition, but very often is not recognised as such. People with dementia, and their carers, have been shown to have palliative care needs equal in extent to those of cancer patients. However, many people with advanced dementia are not routinely being assessed to determine their palliative care needs, and it is not clear why this is so. MAIN BODY: An interdisciplinary workshop on "Palliative Care in Neurodegeneration, with a focus on Dementia", was held in Cork, Ireland, in May 2016. The key aim of this workshop was to discuss the evidence base for palliative care for people with dementia, to identify 'gaps' for clinical research, and to make recommendations for interdisciplinary research practice. To lead the discussion throughout the day a multidisciplinary panel of expert speakers were brought together, including both researchers and clinicians from across Ireland and the UK. Targeted invitations were sent to attendees ensuring all key stakeholders were present to contribute to discussions. In total, 49 experts representing 17 different academic and practice settings, attended. Key topics for discussion were pre-selected based on previously identified research priorities (e.g. James Lind Alliance) and stakeholder input. Key discussion topics included: i. Advance Care Planning for people with Dementia; ii. Personhood in End-of-life Dementia care; iii. Topics in the care of advanced dementia at home. These topics were used as a starting point, and the ethos of the workshop was that the attendees could stimulate discussion and debate in any relevant area, not just the key topics, summarised under iv. Other priorities. CONCLUSIONS: The care experienced by people with dementia and their families has the potential to be improved; palliative care frameworks may have much to offer in this endeavour. However, a solid evidence base is required to translate palliative care into practice in the context of dementia. This paper presents suggested research priorities as a starting point to build this evidence base. An interdisciplinary approach to research and priority setting is essential to develop actionable knowledge in this area.


Asunto(s)
Demencia/terapia , Educación/tendencias , Cuidados Paliativos/normas , Demencia/psicología , Humanos , Estudios Interdisciplinarios , Irlanda , Cuidados Paliativos/métodos , Cuidados Paliativos/tendencias
12.
Parkinsonism Relat Disord ; 37: 19-26, 2017 04.
Artículo en Inglés | MEDLINE | ID: mdl-28108265

RESUMEN

INTRODUCTION: Palliative care is an approach to caring for patients and families affected by serious illnesses that focuses on the relief of suffering through the management of medical symptoms, psychosocial issues, advance care planning and spiritual wellbeing. Over the past decade there has been an emerging clinical and research interest in the application of palliative care approaches to Parkinson's disease (PD) and outpatient palliative care services are now offered by several movement disorders centers. METHODS: An International Working Group Meeting on PD and Palliative Care supported by the Parkinson's Disease Foundation was held in October 2015 to review the current state of the evidence and to make recommendations for clinical research and practice. RESULTS: Topics included: 1) Defining palliative care for PD; 2) Lessons from palliative care for heart failure and other chronic illnesses; 3) Patient and caregiver Needs; 4) Needs assessment tools; 5) Intervention strategies; 6) Predicting prognosis and hospice referrals; 7) Choice of appropriate outcome measures; 8) Implementation, dissemination and education research; and 9) Need for research collaborations. We provide an overview of these discussions, summarize current evidence and practices, highlight gaps in our knowledge and make recommendations for future research. CONCLUSIONS: Palliative Care for PD is a rapidly growing area which holds great promise for improving outcomes for PD patients and their caregivers. While clinical research in this area can build from lessons learned in other diseases, there is a need for observational, methodological and interventional research to address the unique needs of PD patients and caregivers.


Asunto(s)
Investigación Biomédica , Cuidados Paliativos/métodos , Enfermedad de Parkinson/enfermería , Investigación Biomédica/métodos , Investigación Biomédica/normas , Investigación Biomédica/estadística & datos numéricos , Humanos , Enfermedad de Parkinson/diagnóstico
13.
Palliat Med ; 31(7): 634-641, 2017 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-27683476

RESUMEN

BACKGROUND: Palliative care is recommended for non-malignant illnesses, including Parkinson's disease. However, past research with healthcare workers highlights unmet palliative needs in this population and referral rates to Specialist Palliative Care are low. Some healthcare workers perceive a 'fear' in their patients about introducing palliative care. However, less is known about the views of people with Parkinson's disease and their carers about palliative care. AIM: (1) To explore the palliative care and related issues most affecting people with Parkinson's disease and their families and (2) to examine perceptions about/understanding of palliative care. DESIGN: This was a qualitative study; semi-structured interviews were conducted, transcribed and analysed using thematic analysis. SETTING/PARTICIPANTS: A total of 31 people participated, both people with Parkinson's disease ( n = 19) and carers ( n = 12), across three Movement Disorder Clinics in the Republic of Ireland. RESULTS: People with Parkinson's disease and their carers were unfamiliar with the term palliative care. When informed of the role of palliative care, most felt that they would benefit from this input. People with Parkinson's disease and carers experienced a high illness burden and wanted extra support. Crises requiring Specialist Palliative Care involvement may occur at diagnosis and later, with advancing illness. Participants wanted more information about palliative care and especially further supports to address their psychosocial needs. CONCLUSION: A holistic palliative care approach could address the complex physical and psychosocial symptoms experienced by people with Parkinson's disease and their carers, and people with Parkinson's disease and their carers are open to palliative care. Further research needs to explore how palliative care can be introduced into the routine care for people with Parkinson's disease.


Asunto(s)
Cuidadores/psicología , Personal de Salud/psicología , Cuidados Paliativos/psicología , Enfermedad de Parkinson/psicología , Enfermedad de Parkinson/terapia , Prioridad del Paciente/psicología , Adulto , Anciano , Anciano de 80 o más Años , Actitud del Personal de Salud , Actitud Frente a la Salud , Femenino , Humanos , Irlanda , Masculino , Persona de Mediana Edad , Investigación Cualitativa
14.
Int Psychogeriatr ; 28(11): 1807-1820, 2016 11.
Artículo en Inglés | MEDLINE | ID: mdl-27527842

RESUMEN

BACKGROUND: Neuropsychiatric Symptoms (NPS) are ubiquitous in dementia and are often treated pharmacologically. The objectives of this study were to describe the use of psychotropic, anti-cholinergic, and deliriogenic medications and to identify the prevalence of polypharmacy and psychotropic polypharmacy, among older hospitalized patients in Ireland, with and without dementia. METHODS: All older patients (≥ 70 years old) that had elective or emergency admissions to six Irish study hospitals were eligible for inclusion in a longitudinal observational study. Of 676 eligible patients, 598 patients were recruited and diagnosed as having dementia, or not, by medical experts. These 598 patients were assessed for delirium, medication use, co-morbidity, functional ability, and nutritional status. We conducted a retrospective cross-sectional analysis of medication data on admission for 583/598 patients with complete medication data, and controlled for age, sex, and co-morbidity. RESULTS: Of 149 patients diagnosed with dementia, only 53 had a previous diagnosis. At hospital admission, 458/583 patients experienced polypharmacy (≥ 5 medications). People with dementia (PwD) were significantly more likely to be prescribed at least one psychotropic medication than patients without dementia (99/147 vs. 182/436; p < 0.001). PwD were also more likely to experience psychotropic polypharmacy (≥ two psychotropics) than those without dementia (54/147 vs. 61/436; p < 0.001). There were no significant differences in the prescribing patterns of anti-cholinergics (23/147 vs. 42/436; p = 0.18) or deliriogenics (79/147 vs. 235/436; p = 0.62). CONCLUSIONS: Polypharmacy and psychotropic drug use is highly prevalent in older Irish hospitalized patients, especially in PwD. Hospital admission presents an ideal time for medication reviews in PwD.


Asunto(s)
Síntomas Conductuales , Enfermedad Crónica , Demencia , Hospitalización/estadística & datos numéricos , Polifarmacia , Psicotrópicos/uso terapéutico , Anciano , Síntomas Conductuales/diagnóstico , Síntomas Conductuales/tratamiento farmacológico , Enfermedad Crónica/tratamiento farmacológico , Enfermedad Crónica/epidemiología , Demencia/diagnóstico , Demencia/tratamiento farmacológico , Demencia/epidemiología , Demencia/psicología , Femenino , Humanos , Irlanda/epidemiología , Estudios Longitudinales , Masculino , Multimorbilidad , Lista de Medicamentos Potencialmente Inapropiados/estadística & datos numéricos , Pautas de la Práctica en Medicina , Prevalencia
15.
BMC Palliat Care ; 15: 15, 2016 Feb 09.
Artículo en Inglés | MEDLINE | ID: mdl-26860859

RESUMEN

BACKGROUND: An integrated palliative care approach is recommended in all life-limiting diseases, including Parkinson's disease (PD). However research shows that people with PD have unmet palliative care needs. The study aimed to explore multidisciplinary healthcare workers' (HCWs) views on palliative care for people with PD, identifying perceived barriers and facilitators. METHODS: A qualitative design was used; data was analysed using Thematic Analysis. Semi-structured interviews were conducted with 30 HCWs, working either with people with PD or in a palliative care setting in Ireland. RESULTS: A number of perceived barriers were evident helping to account for the previously reported unmet palliative care needs in PD. A lack of education about PD and palliative care meant that HCWs were unsure of the appropriateness of referral, and patients and carers weren't equipped with information to seek palliative care. A lack of communication between PD and palliative care specialists was seen to impede collaboration between the disciplines. Uncertainty about the timing of palliative care meant that it was often not introduced until a crisis point, despite the recognised need for early planning due to increased prevalence of dementia. CONCLUSIONS: Most HCWs recognised a need for palliative care for people with PD; however several barriers to implementing a palliative care approach in this population need to be addressed. Implications for clinical practice and policy include the need for an integrated model of care, and education for all HCWs, patients, carers, and the public on both the nature of advanced PD, and the potential of palliative care in support of patients and their family members.


Asunto(s)
Actitud del Personal de Salud , Personal de Salud , Accesibilidad a los Servicios de Salud/normas , Cuidados Paliativos/estadística & datos numéricos , Enfermedad de Parkinson/terapia , Anciano , Femenino , Grupos Focales , Humanos , Irlanda , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Factores de Tiempo , Incertidumbre
16.
Gerontology ; 62(2): 247-52, 2016.
Artículo en Inglés | MEDLINE | ID: mdl-26113397

RESUMEN

BACKGROUND: Computerised cognitive screening (CCS) has the potential to detect cognitive impairment in the community, which is important for the early diagnosis of dementia. OBJECTIVE: The aim of this study was to investigate the ability of older adults with dementia to engage with smart phone and tablet technologies and to determine the accuracy of a battery of CCS tasks to detect cognitive impairment in comparison with the Montreal Cognitive Assessment (MoCA). METHODS: Patients with mild-moderate dementia (n = 40) attending a university-linked day hospital and normal controls (n = 20) completed (i) a questionnaire detailing the frequency and breadth of their technology use, (ii) three commercially available CCS tasks, and (iii) the MoCA. RESULTS: The three CCS tasks were completed by 85% (n = 34) of the patients with dementia and all controls; only 4 reported the task as 'hard'. Those with dementia scored significantly lower on the CCS than controls (p < 0.001). CCS scores correlated with total MoCA scores (r = 0.78, p < 0.01). Further, the CCS scores significantly predicted MoCA scores, controlling for the effects of age, gender, educational attainment, and frequency of technology use (ß = 0.71, p < 0.001), explaining 65.2% of the variance. Total CCS and MoCA scores (cut-off score <24) had similar sensitivity (94 and 95%, respectively) and accuracy (area under the curve 0.94 and 0.99, respectively, p = 0.5) in discriminating dementia from controls, though the CSS had lower specificity (60 vs. 100% for the MoCA). CONCLUSION: The participants had little difficulty self-administering the CCS, which is an oft-cited barrier to computerised testing in this population. Our results support the criterion and construct validity of a CCS versus the commonly used MoCA. Although further research is required, CCS for cognitive impairment may be useful in the community and, by prompting referral to specialist services, could lead to an earlier diagnosis of dementia.


Asunto(s)
Disfunción Cognitiva/diagnóstico , Demencia/diagnóstico , Diagnóstico por Computador , Anciano , Anciano de 80 o más Años , Estudios de Casos y Controles , Estudios de Factibilidad , Femenino , Humanos , Masculino , Tamizaje Masivo , Persona de Mediana Edad , Pruebas Neuropsicológicas , Psicometría , Reproducibilidad de los Resultados , Sensibilidad y Especificidad , Encuestas y Cuestionarios
17.
J Geriatr Psychiatry Neurol ; 28(4): 255-9, 2015 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-26047636

RESUMEN

CONTEXT: As the prevalence of dementia increases, more people will need dementia palliative and end-of-life (EOL) care in acute hospitals. Published literature suggests that good quality care is not always provided. OBJECTIVE: To evaluate the prescription of antipsychotics and performance of multidisciplinary assessments relevant to palliative care for people with dementia, including those at EOL, during hospital admission. METHOD: As part of a national audit of dementia care, 660 case notes were reviewed across 35 acute hospitals. RESULTS: In the entire cohort, many assessments essential to dementia palliative care were not performed. Of the total sample, 76 patients died, were documented to be receiving EOL care, and/or were referred for specialist palliative care. In this cohort, even less symptom assessment was performed (eg, no pain assessment in 27%, no delirium screening in 68%, and no mood or behavioral and psychological symptoms of dementia in 93%). In all, 37% had antipsychotic drugs during their admission and 71% of these received a new prescription in hospital, most commonly for "agitation." CONCLUSION: This study suggests a picture of poor symptom assessment and possible inappropriate prescription of antipsychotic medication, including at EOL, hindering the planning and delivery of effective dementia palliative care in acute hospitals.


Asunto(s)
Demencia/diagnóstico , Demencia/psicología , Auditoría Médica , Cuidados Paliativos , Admisión del Paciente , Evaluación de Síntomas , Cuidado Terminal , Anciano de 80 o más Años , Antipsicóticos/administración & dosificación , Antipsicóticos/uso terapéutico , Estudios de Cohortes , Delirio/complicaciones , Delirio/diagnóstico , Demencia/complicaciones , Demencia/tratamiento farmacológico , Femenino , Hospitalización , Humanos , Masculino , Dolor/complicaciones , Dolor/diagnóstico , Dimensión del Dolor , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Cuidado Terminal/métodos , Cuidado Terminal/normas
18.
J Clin Epidemiol ; 67(1): 87-92, 2014 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-24075291

RESUMEN

OBJECTIVES: The Alzheimer's Disease Assessment Scale-cognitive section and its standardized version (SADAS-cog) are the current standard for assessing cognitive outcomes in clinical trials of dementia. This study compares a shorter cognitive instrument, the Quick Mild Cognitive Impairment (Qmci) screen, with the SADAS-cog as outcome measures in clinical trials. STUDY DESIGN AND SETTING: The SADAS-cog, Qmci, Clinical Dementia Rating (CDR) scale, and the Lawton-Brady activities of daily living (ADL) scale were assessed at multiple time points, over 1 year in a multicenter randomized clinical trial of 406 patients with mild to moderate Alzheimer's dementia. Correlations were estimated using regression at each time point, all time points, and mean values across time. Responsiveness was assessed using the standardized response mean (SRM). RESULTS: Regression for pooled time points showed strong and significant correlation between the SADAS-cog and Qmci (r = -0.75, P < 0.001). Correlations remained strong for mean values across time and at each time point. The SADAS-cog and Qmci also correlated with CDR and ADL scores. There was no difference in SRMs between the SADAS-cog and Qmci [t(357) = -0.32, P = 0.75]. CONCLUSION: The Qmci correlated strongly with the SADAS-cog and both were equally responsive to deterioration. We suggest that clinicians and investigators can substitute the shorter Qmci for the SADAS-cog.


Asunto(s)
Enfermedad de Alzheimer/psicología , Disfunción Cognitiva/diagnóstico , Tamizaje Masivo/métodos , Escalas de Valoración Psiquiátrica , Anciano , Anciano de 80 o más Años , Enfermedad de Alzheimer/tratamiento farmacológico , Humanos , Reproducibilidad de los Resultados
20.
Age Ageing ; 41(5): 624-9, 2012 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-22610464

RESUMEN

INTRODUCTION: differentiating mild cognitive impairment (MCI) from normal cognition (NC) is difficult. The AB Cognitive Screen (ABCS) 135, sensitive in differentiating MCI from dementia, was modified to improve sensitivity and specificity, producing the quick mild cognitive impairment (Qmci) screen. OBJECTIVE: this study compared the sensitivity and specificity of the Qmci with the Standardised MMSE and ABCS 135, to differentiate NC, MCI and dementia. METHODS: weightings and subtests of the ABCS 135 were changed and a new section 'logical memory' added, creating the Qmci. From four memory clinics in Ontario, Canada, 335 subjects (154 with MCI, 181 with dementia) were recruited and underwent comprehensive assessment. Caregivers, attending with the subjects, without cognitive symptoms, were recruited as controls (n = 630). RESULTS: the Qmci was more sensitive than the SMMSE and ABCS 135, in differentiating MCI from NC, with an area under the curve (AUC) of 0.86 compared with 0.67 and 0.83, respectively, and in differentiating MCI from mild dementia, AUC of 0.92 versus 0.91 and 0.91. The ability of the Qmci to identify MCI was better for those over 75 years. CONCLUSION: the Qmci is more sensitive than the SMMSE in differentiating MCI and NC, making it a useful test, for MCI in clinical practice, especially for older adults.


Asunto(s)
Disfunción Cognitiva/diagnóstico , Pruebas de Inteligencia , Tamizaje Masivo/métodos , Adulto , Anciano , Anciano de 80 o más Años , Cognición/fisiología , Disfunción Cognitiva/fisiopatología , Disfunción Cognitiva/psicología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Ontario , Estudios Retrospectivos , Sensibilidad y Especificidad
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