Advanced Dementia Clinical Trial
Official title:
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:
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.
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.
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