Advanced Dementia and End-of-life
Palliative and Hospice Care in Advanced Dementia: Experiences of Care Givers and Benefit of a Brochure Serving as a Decision-making Aid
Palliative and hospice care in advanced dementia: experiences of care givers and benefit of a brochure serving as a decision-making aid
Aims:
Designing a brochure serving as an information tool and decision-making aid used to answer questions concerning palliative and hospice care for care-givers of persons with advanced dementia.
The brochure shall demonstrate the possibilities and offerings of palliative and hospice care and shall serve to inform about the advanced stages of dementia, the legal basic principles in decision making and ethical problems, treatment options and (palliative) treatment goals.
Survey of the palliative, palliative medical and hospice care of persons with advanced dementia in ambulatory settings, as well as in residential geriatric care and the experiences of the care-givers.
By examining persons with dementia and inspecting the care documents and where applicable the medical files it is to be evaluated:
- which procedures of palliative and hospice care are practically implemented in ambulatory care and in residential geriatric care,
- which symptoms the persons with dementia suffer from and how those symptoms are (or are not) treated,
- to what extend caregivers are informed about relevant aspects
- how caregivers assess care and which problems, needs and requests exist.
- Piloting phase for the brochure. To test the comprehensibility and the acceptance of the brochure a study is planned. The caregivers are asked for their opinion whether the brochure is helpful. It is recorded if the reading of the brochure gets the caregivers to engage actively in the participative decision making process.
Descripción general del estudio
Estado
Condiciones
Intervención / Tratamiento
Descripción detallada
Two visits at home or in the residential geriatric care at intervals of eight to twelve weeks are scheduled.
The following data is collected at enrollment:
- Informed consent of the caregiver and of the patient or rather the caregiver with powers of attorney
- Sociodemographic data (caregiver and person with dementia), e.g. age, sex, education, degree of relationship
- Interview of the caregiver using standardized
- Examination of the person with dementia, recording of the treatment and the care situation, cognitive status: Mini-Mental-Status-Test, severity of dementia: Clinical Dementia Rating Scale, performance in basic activities of daily living: Barthel-Index,communication competence, diagnosis, (palliative) medical and hospice care (including specialists in palliative care, specialists in hospice care, general practioners, domiciliary care services, Allgemeine Ambulante Palliativversorgung [AAPV], Spezielle Ambulante Palliativversorgung [SAPV], AAPV and SAPV both being a specific ambulatory palliative care of the statutory health insurance system in Germany, cognitive/neurological/physical symptoms, symptom Management including pharmacological and non-pharmacological treatment, interventions, existence and phrasing of advanced directives and durable power of attorney.
After enrollment the brochure is handed and explained to the caregivers and they are encouraged to read it. It is pointed out that they are contacted after two to three months to answer questions concerning comprehensibility, acceptance, practical consequences and to give a personnel review.
At study end after two to three months standardized interviews are conducted to gather information about comprehensibility and acceptance of the brochure, how it is reviewed by the caregivers and if the reading had direct consequences with regard to knowledge of the caregiver, communicating with nursing staff/physicians, decision making and implementing those decisions.
Tipo de estudio
Inscripción (Actual)
Fase
- No aplica
Contactos y Ubicaciones
Ubicaciones de estudio
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Bavaria
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Munich, Bavaria, Alemania, 81675
- Center for Cognitive Disorders
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Criterios de participación
Criterio de elegibilidad
Edades elegibles para estudiar
Acepta Voluntarios Saludables
Géneros elegibles para el estudio
Descripción
Inclusion Criteria:
- Person with dementia + caregiver live in the Munich area
- Person with dementia lives in a nursing home or at home
- Person with dementia is in an advanced stage of the disease (moderate to severe dementia)
- Informed consent of the caregiver and the person with powers of attorney
- Caregiver is German-speaking and able to read
Plan de estudios
¿Cómo está diseñado el estudio?
Detalles de diseño
- Propósito principal: Cuidados de apoyo
- Asignación: N / A
- Modelo Intervencionista: Asignación de un solo grupo
- Enmascaramiento: Ninguno (etiqueta abierta)
¿Qué mide el estudio?
Medidas de resultado primarias
Medida de resultado |
Medida Descripción |
Periodo de tiempo |
|---|---|---|
|
Patients' Perceived Involvement in Care Scale
Periodo de tiempo: two to three months
|
Involvement is expected, when caregiver at study end achieve one point more in the sum score (sum score maximum is eight points)
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two to three months
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Medidas de resultado secundarias
Medida de resultado |
Medida Descripción |
Periodo de tiempo |
|---|---|---|
|
family caregivers´satisfaction with care
Periodo de tiempo: Assessment A (inclusion/baseline, before reading the brochure) and Assessment B (after reading the brochure, two to three months after Assessment A)
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the adapted version of End of life in dementia-Satisfaction with Care, (SWC-EOLD)
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Assessment A (inclusion/baseline, before reading the brochure) and Assessment B (after reading the brochure, two to three months after Assessment A)
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Colaboradores e Investigadores
Patrocinador
Publicaciones y enlaces útiles
Publicaciones Generales
- MAHONEY FI, BARTHEL DW. FUNCTIONAL EVALUATION: THE BARTHEL INDEX. Md State Med J. 1965 Feb;14:61-5. No abstract available.
- Folstein MF, Folstein SE, McHugh PR. "Mini-mental state". A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res. 1975 Nov;12(3):189-98. doi: 10.1016/0022-3956(75)90026-6. No abstract available.
- Morris JC. The Clinical Dementia Rating (CDR): current version and scoring rules. Neurology. 1993 Nov;43(11):2412-4. doi: 10.1212/wnl.43.11.2412-a. No abstract available.
- Ryan RE, Connolly M, Bradford NK, Henderson S, Herbert A, Schonfeld L, Young J, Bothroyd JI, Henderson A. Interventions for interpersonal communication about end of life care between health practitioners and affected people. Cochrane Database Syst Rev. 2022 Jul 8;7(7):CD013116. doi: 10.1002/14651858.CD013116.pub2.
- Lerman CE, Brody DS, Caputo GC, Smith DG, Lazaro CG, Wolfson HG. Patients' Perceived Involvement in Care Scale: relationship to attitudes about illness and medical care. J Gen Intern Med. 1990 Jan-Feb;5(1):29-33. doi: 10.1007/BF02602306.
- Vohra JU, Brazil K, Hanna S, Abelson J. Family Perceptions of End-of-Life Care in long-term care facilities. J Palliat Care. 2004 Winter;20(4):297-302.
- Biola H, Sloane PD, Williams CS, Daaleman TP, Williams SW, Zimmerman S. Physician communication with family caregivers of long-term care residents at the end of life. J Am Geriatr Soc. 2007 Jun;55(6):846-56. doi: 10.1111/j.1532-5415.2007.01179.x.
- Riedl L, Bertok M, Hartmann J, Fischer J, Rossmeier C, Dinkel A, Ortner M, Diehl-Schmid J. Development and testing of an informative guide about palliative care for family caregivers of people with advanced dementia. BMC Palliat Care. 2020 Mar 12;19(1):30. doi: 10.1186/s12904-020-0533-3.
Fechas de registro del estudio
Fechas importantes del estudio
Inicio del estudio (Actual)
Finalización primaria (Actual)
Finalización del estudio (Actual)
Fechas de registro del estudio
Enviado por primera vez
Primero enviado que cumplió con los criterios de control de calidad
Publicado por primera vez (Actual)
Actualizaciones de registros de estudio
Última actualización publicada (Actual)
Última actualización enviada que cumplió con los criterios de control de calidad
Última verificación
Más información
Términos relacionados con este estudio
Palabras clave
Términos MeSH relevantes adicionales
Otros números de identificación del estudio
- palliative study
Plan de datos de participantes individuales (IPD)
¿Planea compartir datos de participantes individuales (IPD)?
Información sobre medicamentos y dispositivos, documentos del estudio
Estudia un producto farmacéutico regulado por la FDA de EE. UU.
Estudia un producto de dispositivo regulado por la FDA de EE. UU.
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