Advanced Dementia Stages, Palliative Care
Conditions
Keywords
dementia, young onset dementia, quality of death, late onset dementia, palliative care
Brief summary
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.
Interventions
None listed
Sponsors
Technical University of Munich
Ludwig-Maximilians - University of Munich
Deutsche Alzheimer Gesellschaft
Centre Hospitalier Universitaire Vaudois
German Federal Ministry of Education and Research
Study design
Observational model
CASE_ONLY
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| patient´s quality of life in late stage dementia | Baseline | Quality of ife in late-stage dementia scale (QUALID-Scale): 11 questions, Score 1 to 5 each, total sum score range 11 to 55, 11 means highest quality of life |
| patient´s comfort of dying with dementia | Assessment B at the latest 4 months after patient's death | Comfort assessment of dying with dementia (CAD-EOLD)-Scale: Subscale of End of Life in Dementia Scale (EOLD), 14 symptoms/ conditions during patient´s dying process to be rated by proxy, Score 1-3 each. Total sum score range 14 to 42. 42 means highest level of comfort during dying process. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| health care utilization in late-stage dementia and during the dying process | Assessment A (inclusion, patient is alive) and Assessment B (as soon as possible after patient´s death, at the latest 4 months after death) | semi-structured interviews with the caregivers |
| Caregivers' problems, challenges, barriers, needs, preferences in late-stage dementia and during the dying process | Assessment A (inclusion, patient is alive) and Assessment B (as soon as possible after patient´s death, at the latest 4 months after death) | open questions to the family caregiver |
| symptoms and symptom management in late-stage dementia and during the dying process | Assessment A (study inclusion, patient is alive) and Assessment B (as soon as possible after patient´s death, at the latest 4 months after death) | adapted version of End of Life in Dementia -Symptom Management scale (SM-EOLD); patient´s examination; assessment of drug treatment and non-medical therapies by evaluation of medical files |
| family caregivers´satisfaction with care | Assessment A (inclusion, patient is alive) and Assessment B (as soon as possible after patient´s death, at the latest 4 months after death) | various scales, e.g. the adapted version of End of life in dementia-Satisfaction with Care, (SWC-EOLD) |
| family caregivers' burden and coping | Assessment A (inclusion, patient is alive) and Assessment B (as soon as possible after patient´s death, at the latest 4 months after death) | various scales, e.g. the adapted version of Caregiver Strain Index (CSI) |
| palliative care provision in late-stage dementia and during the dying process | Assessment A (inclusion, patient is alive) and Assessment B (as soon as possible after patient´s death, at the latest 4 months after death) | semi-structured interviews with the caregiver to assess the status quo of (palliative) care issues (e.g. availability of general outpatient palliative care (AAPV), specialized outpatient palliative care (SAPV) or palliative care nurses; description of LTC setting; caregivers´experiences with palliative care) |
Countries
Germany
Outcome results
None listed