Palliative and hospice care in advanced dementia: experiences of care givers and benefit of a brochure serving as a decision-making aid Aims: 1. 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. 2. 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. 3. 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.
Age range
18 Years
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
Patients' Perceived Involvement in Care Scale
Timeframe: two to three months