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

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.

Eligibility Criteria:
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