IssuEs in Palliative Care for People in Advanced and Terminal Stages of Young-onset and Late-Onset Dementia in GErmany

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

300 participants

Study Classification

OBSERVATIONAL

Study Start Date

2017-08-19

Study Completion Date

2020-01-30

Brief Summary

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From a scientific view, palliative care issues in dementia are neglected in Germany. Neither in Germany nor internationally research has been conducted on palliative care issues in young onset dementia (YOD), although significant differences compared to late onset dementia (LOD) are expected. Most international studies have focused on patients in long term care (LTC) facilities but have neglected patients that are cared for at home. We hypothesize that in advanced and terminal stages of YOD and LOD unmet care needs exist and that they differ between YOD and LOD. By prospectively assessing and surveying 200 patients with YOD and LOD in advanced stages who are cared for in LTC facilities and at home and investigating circumstances of death of 100 YOD- and LOD-patients, it is possible 1) to describe symptoms and management, health care utilization, palliative care provision, quality of life and death, elements of advance care planning, family caregivers' needs and satisfaction; 2) to compare YOD and LOD; 3) to develop expert-consensus recommendations derived from study results for the improvement and implementation of strategies and interventions for palliative care provision. 4) to communicate the recommendations nationally and internationally in order to improve and adapt guidelines, to implement the recommendations into daily practice and to give a basis and perspectives for future research projects; to communicate the results to patients and their families in order to counsel and support them in their decision making processes and their dialogue with professional caregivers and physicians.

Detailed Description

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Conditions

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Advanced Dementia Stages Palliative Care

Study Design

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Observational Model Type

CASE_ONLY

Study Time Perspective

PROSPECTIVE

Study Groups

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young onset dementia

No interventions assigned to this group

late onset dementia

No interventions assigned to this group

Eligibility Criteria

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Inclusion Criteria

* Patient with moderate or severe dementia (CDR = 2 or 3)
* Patient lives at home or in long term care
* Patient has got a family caregiver \> 18 years
* Family caregiver has sufficient knowledge of German language
* Written informed consent of family caregiver
* Written informed consent of patient or legal representative, respectively
* Documents of legal representative/ Power of attorney

Exclusion Criteria

• at least one inclusion criterion is not met

Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Responsible Party

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Janine Diehl-Schmid

Clinical Professor, Principle Investigator

Responsibility Role PRINCIPAL_INVESTIGATOR

Locations

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Zentrum für kognitive Störungen, Psychiatrische Klinik und Poliklinik, Klinikum Rechts der Isar, TU München

München, Bavaria, Germany

Site Status

Countries

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Germany

References

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Diehl-Schmid J, Hartmann J, Rossmeier C, Riedl L, Forstl H, Egert-Schwender S, Kehl V, Schneider-Schelte H, Jox RJ. IssuEs in Palliative care for people in advanced and terminal stages of Young-onset and Late-Onset dementia in GErmany (EPYLOGE): the study protocol. BMC Psychiatry. 2018 Aug 31;18(1):271. doi: 10.1186/s12888-018-1846-0.

Reference Type BACKGROUND

PMID: 30170575 (View on PubMed)

Riedl L, Kiesel E, Hartmann J, Fischer J, Rossmeier C, Haller B, Kehl V, Priller J, Trojan M, Diehl-Schmid J. A bitter pill to swallow - Polypharmacy and psychotropic treatment in people with advanced dementia. BMC Geriatr. 2022 Mar 16;22(1):214. doi: 10.1186/s12877-022-02914-x.

Reference Type DERIVED

PMID: 35296254 (View on PubMed)

Other Identifiers

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PALLVFKS022EPYLOGE

Identifier Type: -

Identifier Source: org_study_id