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Conceptual framework for assisted dying for individuals with dementia - views of experts not opposed in principle

DEHKHODA, Aida ; OWENS, Richard G. ; MALPAS, Phillipa J.
Dementia, 14/05/2020, Pagination inconnue

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Characteristics and outcomes of dementia patients who receive inpatient palliative care consultation

SHARDA, Neema ; ZIETLOW, Kahli ; WONG, Serena ; KUCHIBHATLA, Maragatha ; JOHNSON, Kimberly S.
Journal of the American Geriatrics Society, 16/05/2020, Pagination inconnue

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Thème : Médecine.

DEMENCE ; DEMARCHE PALLIATIVE ; CONSULTATION ; ETUDE RETROSPECTIVE ; PERSONNE AGEE

BACKGROUND/OBJECTIVES: acute hospitalization may be an ideal opportunity to introduce palliative care to dementia patients, who may benefit from symptom management and goals of care discussions. We know little about patients who receive inpatient palliative care consultations (IPCCs).
DESIGN: Retrospective analysis using electronic medical record.
SETTING: Tertiary academic medical center and affiliated community hospital.
PARTICIPANTS: Patients with dementia by International Classification of Diseases diagnosis, 65 years or older, hospitalized between July 1, 2015, and December 31, 2015.
MEASUREMENTS: We used 2 and t -test/Mann-Whitney U test to compare characteristics (living arrangement, advanced dementia markers, diagnoses of delirium and dementia with behavior disturbance, and admitting diagnosis) and outcomes (change in code status, length of stay [LOS], discharge disposition, and discharge medications for symptom management) of patients who did and did not receive IPCC. Patients were matched on sex, age, and race.
RESULTS: Among 927 hospitalized patients with dementia, 17% received IPCC (N = 157). Patients who received IPCC were more likely to be admitted from a nursing facility (35.7% vs 12.7%; P < .0001), experience delirium (71.3% vs 57.3%; P = .01), have behavior disturbance (23.6% vs 13.4%; P = .02), have a pressure ulcer at admission (26.1% vs 11.5%; P = .001), have hypernatremia (12.7% vs 3.2%; P = .002), and be bedbound (20.4% vs 3.2%; P < .000). Patients who received IPCC had a longer LOS (median = 5.9 vs 4.3 days; P = .004) and were more likely to be discharged to hospice (56% vs 3.1%; P < .0001). Patients with IPCC were more likely to have a discharge code status of do not attempt resuscitation (89% vs 46%). There was no significant difference in comfort medications at discharge between groups.
CONCLUSIONS: Patients who received IPCC had evidence of more advanced dementia. These patients were more likely to change their code status and enroll in hospice. IPCC may be useful to prioritize patient-centered care and discuss what matters most to patients and families.

Origine : PubMed

Advance care planning for people living with dementia - an umbrella review of effectiveness and experiences

WENDRICH-VAN DAEL, Annelien ; BUNN, Frances ; LYNCH, Jennifer ; PIVODIC, Lara ; VAN DEN BLOCK, Lieve ; GOODMAN, Claire
International journal of nursing studies, 20/03/2020, vol.107, p. 1-13

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Thème : Soins. Cote : eD02.03.00

PROJET SOIN ANTICIPE ; DEMENCE ; REVUE SYSTEMATIQUE ; EFFICACITE

BACKGROUND: End of life care is often inadequate for people with dementia. Advanced care planning (ACP) has the potential to improve outcomes for people with dementia. The aim of this review is to establish the strength of the evidence and provide decision makers with a clear understanding of what is known about ACP for people living with dementia.
DESIGN: Evidence synthesis including systematic reviews and primary studies. PROSPERO registration: CRD42018107718.
DATA SOURCES: PubMed, CINAHL Plus, SCOPUS, Social Care Online and Cochrane Library were searched (July 2018). No year limit applied. To be included, reviews had to evaluate effectiveness of ACP for people with dementia or report on views and experiences of ACP from the perspective of people with dementia, carers, or health and care professionals. Additional searches (September 2018) were conducted to identify recent primary studies not included in the reviews.
REVIEW METHODS: Data extraction was undertaken by one reviewer and checked by a second. Methodological quality was assessed using AMSTAR-2 and Joanna Briggs Institute instruments by two authors independently. Outcomes were categorized and tabulated to assess effectiveness. Qualitative data was analysed using thematic synthesis.
RESULTS: Nineteen reviews (163 unique studies) and 11 primary articles with a range of advance care planning definitions and of variable quality were included. Advance care planning was associated with decreased hospitalizations, increased concordance between care received and prior wishes and increased completion of advance care planning documents but quality of primary research was variable. Views of ACP for people with dementia can be clustered around six themes; 1) timing and tailoring, 2) willingness to engage, 3) roles and responsibilities of healthcare professionals, 4) relationships, 5) training and 6) resources needed. Diminishing decision-making capacity over time is a key overarching feature.
CONCLUSIONS: Advance care planning is acceptable for people with dementia and their carers and is associated with improved outcomes. Guidelines on which outcomes and which definition to use are necessary, as is research to test different approaches to ACP. Education on topics related to diminishing decision-making capacity is key to optimize advance care planning for people with dementia and their carers.

Origine : PubMed

Advance directives for dementia can elicit preferences to improve patient care

MEREL, Susan E. ; GASTER, Barak
Journal of the American Geriatrics Society, 06/05/2020, Pagination inconnue

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Medical ethics issues in dementia and end of life

ALLEN, William
Current psychiatry reports, 09/05/2020, vol.22, n°6, Pagination inconnue

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Characteristics of people with dementia vs other conditions on admission to inpatient palliative care

DING, Jinfeng ; JOHNSON, Claire E. ; LEE, Yun Chong Olivia ; GAZEY, Angela ; COOK, Angus
Journal of the American Geriatrics Society, 24/04/2020, Pagination inconnue

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Thème : Médecine.

DEMENCE ; DEMARCHE PALLIATIVE ; AUSTRALIE ; SYMPTOME ; ANALYSE COMPARATIVE

OBJECTIVES: Our aim was to (1) describe the clinical characteristics and symptoms of people diagnosed with dementia at the time of admission to inpatient palliative care; and (2) compare the nature and severity of these palliative care–related problems to patients with other chronic diseases.
DESIGN: Descriptive study using assessment data on point of care outcomes (January 1, 2013, to December 31, 2018).
SETTING: A total of 129 inpatient palliative care services participating in the Australian Palliative Care Outcomes Collaboration.
PARTICIPANTS: A total of 29,971 patients with a primary diagnosis of dementia (n = 1,872), lung cancer (n = 19,499), cardiovascular disease (CVD, n = 5,079), stroke (n = 2,659), or motor neuron disease (MND, n = 862).
MEASUREMENTS: This study reported the data collected at the time of admission to inpatient palliative care services including patients' self-rated levels of distress from seven common physical symptoms, clinician-rated symptom severity, functional dependency, and performance status. Other data analyzed included number of admissions, length of inpatient stay, and palliative care phases.
RESULTS: At the time of admission to inpatient palliative care services, relative to patients with lung cancer, CVD, and MND, people with dementia presented with lower levels of distress from most symptoms (odds ratios [ORs] range from .15 to .80; P < .05 for all) but higher levels of functional impairment (ORs range from 3.02 to 8.62; P < .001 for all), and they needed more assistance with basic activities of daily living (ORs range from 3.83 to 12.24; P < .001 for all). The trends were mostly the opposite direction when compared with stroke patients. Patients with dementia tended to receive inpatient palliative care later than those with lung cancer and MND.
CONCLUSION: The unique pattern of palliative care problems experienced by people with dementia, as well as the skills of the relevant health services, need to be considered when deciding on the best location of care for each individual. Access to appropriately trained palliative care clinicians is important for people with high levels of physical or psychological concerns, irrespective of the care setting or diagnosis.

Origine : PubMed

Doctors can fulfil euthanasia request if patient develops dementia, rules Dutch supreme court

SHELDON, Tony
BMJ (Clinical research ed.), 24/04/2020, vol.369, Pagination inconnue

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Social regulation activities in end-of-life - a qualitative study on completion of advance directives in Swiss nursing homes

DROZ MENDELZWEIG, M.
BMC palliative care, 23/04/2020, vol.19, n°1, p. 1-11

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Bioethical implications of end-of-life decision-making in patients with dementia - a tale of two societies

MONDRAGON, Jaime D. ; SALAME-KHOURI, Latife ; KRAUS-WEISMAN, Arnoldo S. ; DE DEYN, Peter P.
Monash bioethics review, 25/04/2020, p. 49-67

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Prescribing medications of questionable benefit prior to death - a retrospective study on older nursing home residents with and without dementia in Germany

RAUSCH, Christian ; HOFFMANN, Falk
European journal of clinical pharmacology, 26/03/2020, p. 1-9

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A theoretical exploration of live discharge from hospice for caregivers of adults with dementia

WLADKOWSKI, Stephanie P. ; WALLACE, Cara L. ; GIBSON, Allison
Journal of social work in end-of-life and palliative care, 30/03/2020, p. 1-18

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Is preparation for end of life associated with pre-death grief in caregivers of people with dementia?

MOORE, Kirsten J. ; CRAWLEY, Sophie ; VICKERSTAFF, Victoria ; COOPER, Claudia ; KING, Michael ; SAMPSON, Elizabeth L.
International psychogeriatrics, 03/04/2020, p. 1-11

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A narrative review of facilitating and inhibiting factors in advance care planning initiation in people with dementia

PHENWAN, Tharin ; SIXSMITH, Judith ; MCSWIGGAN, Linda ; BUCHANAN, Deans
European geriatric medicine, 02/04/2020, p. 1-16

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Beliefs of Israeli family caregivers of people with dementia toward advance care planning

KERMEL-SCHIFFMAN, Ile ; WERNER, Perla
Journal of social work in end-of-life and palliative care, 06/04/2020, p. 1-16

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Palliative care for dementia

HASHIMIE, Jaffrey ; SCHULTZ, Susan K. ; STEWART, Jonathan T.
Clinics in geriatric medicine, 05/2020, vol.36, n°2, p. 329-339

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What do family care-givers want from domiciliary care for relatives living with dementia? - a qualitative study

POLLOCK, Kristian ; WILKINSON, Samantha ; PERRY-YOUNG, Lucy ; TURNER, Nicola ; SCHNEIDER, Justine
Ageing and society, 06/03/2020, p. 1-14

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Non-use of community health-care services - an exploratory cross-sectional study among family care-givers for older, home-dwelling persons with dementia

MOHOLT, Jill-Marit ; FRIBORG, Oddgeir ; HENRIKSEN, Nils ; HAMRAN, Torunn ; BLIX, Bodil H.
Ageing and society, 2020, p. 1-25

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Development and testing of an informative guide about palliative care for family caregivers of people with advanced dementia

RIEDL, Lina ; BERTOK, Manuela ; HARTMANN, Julia ; FISCHER, Julia ; ROSSMEIER, Carola ; DINKEL, Andreas ; ORTNER, Marion ; DIEHL-SCHMID, Janine
BMC palliative care, 12/03/2020, vol.19, n°1, p. 1-8

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Thème : Soins. Cote : eD02.03.03

GUIDE ; DEMARCHE PALLIATIVE ; AIDANT ; DEMENCE

BACKGROUND: Since people with advanced dementia are usually not able to make complex decisions, it is usually the family caregivers, as proxies, who have to decide on treatments and their termination. However, these decisions are difficult for the caregivers to make, as they are often inadequately informed and cannot properly assess the consequences; moreover, they are concerned about harming the sick person. We aimed to first develop an informative booklet about palliative care issues for caregivers of people with advanced dementia. Secondly, we aimed to investigate a change in family caregivers' knowledge regarding palliative care issues and caregivers' involvement in medical and care decisions before and after studying this booklet.
METHODS: A first version of the booklet was drafted by an experienced psychiatrist and palliative care specialist based on existing booklets and guidelines; necessary cultural adaptions were taken into consideration. A nominal group process was conducted to develop the informative guide. In order to investigate the acceptance of the booklet and the possibility to implement it, 38 patient-caregiver dyads were recruited, and caregivers were interviewed both before receiving the booklet and after 3 months of receiving the booklet.
RESULTS: Experts from various disciplines collaborated on a German booklet for family caregivers of people with advanced dementia as an information aid regarding issues of palliative care. The subsequent test showed that all caregivers had experienced a personal benefit from the booklet. Caregivers had a significant gain of knowledge after provision of the booklet. A large proportion of caregivers who had not previously considered and/or discussed medical topics reported that they had done so within 3 months after obtaining the booklet, or planned to do so in the near future.
CONCLUSIONS: The caregivers valued the comprehensible, concise and well-structured information guide on palliative care issues in advanced dementia. They agreed it increases knowledge and prompts decision making and therefore should be developed in many languages and disseminated among family caregivers of people with dementia.

Origine : PubMed

Comparing advance care planning in young-onset dementia in the USA vs Belgium - challenges partly related to societal context

VAN RICKSTAL, Romy ; DE VLEMINCK, Aline ; MORRISON, Sean R. ; KOOPMANS, Raymond T. ; VAN DER STEEN, Jenny T. ; ENGELBORGHS, Sebastiaan ; NEUGROSCHL, Judith ; ALDRIDGE, Melissa D. ; SANO, Mary ; VAN DEN BLOCK, Lieve
Journal of the American Medical Directors Association, 12/03/2020, Pagination inconnue

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Hospice staff perspectives on caring for people with dementia - a multisite, multistakeholder study

HARRISON, Krista L. ; ALLISON, Theresa A. ; GARRETT, Sarah B. ; THOMPSON, Nicole ; SUDORE, Rebecca L. ; RITCHIE, Christine S.
JOURNAL OF PALLIATIVE MEDICINE, 04/03/2020, Pagination inconnue

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Thème : Soins.

UNITE SOINS PALLIATIFS ; PERSONNEL SANTE ; DEMENCE ; FIN VIE ; ETATS-UNIS

Background: In the United States, 45% of people enrolled in hospice have dementia. We know little about how hospice professionals facilitate preference-aligned end-of-life care for people with dementia (PWD) and their families.
Objective: To examine hospice stakeholders' perspectives on caring for PWD and their families.
Design: Multisite qualitative study using semi-structured interviews with interdisciplinary hospice clinicians, leaders, and administrators. The interdisciplinary team used the constant comparative method to identify, code, and characterize relevant themes.
Setting/participants: Four geographically distinct nonprofit U.S. hospice organizations. Fifty-one hospice employees: 61% clinical staff, 25% executive leaders, and 14% administrators.
Measurements: Interview domains included participants' practices of engaging patients/families in discussions of preferences for end-of-life care and professional opinions of changes over time. Cross-topic probes focused on delivering hospice care to PWD and their proxies/families.
Results: Four themes regarding caring for PWD in hospice. (1) Dementia prevalence in hospice is increasing and some hospices are developing programs to accommodate specific needs. (2) Setting impacts discussions of preferences and care decisions. (3) Caring for PWD on hospice poses unique challenges caused by (i) perceptions that dementia is not terminal, (ii) a lack of advance care planning discussions before hospice admission, and (iii) proxy decision-makers who were inadequately prepared for their role. (4) Hospice regulatory and policy changes disproportionately impact PWD.
Conclusions: Hospice professionals perceive increasing demand for, and multilevel challenges to, caring for PWD. Clinicians "upstream" from hospice may help by engaging patients and proxies in discussions of preferences for end-of-life care and providing anticipatory guidance.

Origine : PubMed

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