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| Name | Class |
|---|---|
| Bavarian State Ministry of Health and Care | OTHER_GOV |
| German Alzheimer Society | OTHER |
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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:
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.
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:
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.
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| provision of relevant information | Behavioral | caregivers are provided with brochure that informs about end-of-life issues for persons with advanced dementia |
| Measure | Description | Time Frame |
|---|---|---|
| Patients' Perceived Involvement in Care Scale | Involvement is expected, when caregiver at study end achieve one point more in the sum score (sum score maximum is eight points) | two to three months |
| Measure | Description | Time Frame |
|---|---|---|
| family caregivers´satisfaction with care | the adapted version of End of life in dementia-Satisfaction with Care, (SWC-EOLD) | 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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Inclusion Criteria:
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Center for Cognitive Disorders | Munich | Bavaria | 81675 | Germany |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 1202204 | Background | 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. | |
| 8232972 | Background | 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. |
| Label | URL |
|---|---|
| legal basis for AAPV and SAPV | View source |
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| 14258950 | Background | MAHONEY FI, BARTHEL DW. FUNCTIONAL EVALUATION: THE BARTHEL INDEX. Md State Med J. 1965 Feb;14:61-5. No abstract available. |
| 2299426 | Background | 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. |
| 15690832 | Background | 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. |
| 17537084 | Background | 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. |
| 35802350 | Derived | 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. |
| 32164707 | Derived | 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. |
| Preparation for decision making scale | View source |