IssuEs in Palliative care for people in advanced and terminal stages of Young-onset and Late-Onset dementia in GErmany (EPYLOGE): the study protocol

Most dementias are life-limiting disorders for which a curative treatment does not exist. Advanced stages of dementia are characterized by severe cognitive and physical impairment and the need for 24-h care for most patients. Therefore, at least 50% of persons with advanced dementia are admitted into long term care (LTC) settings, where they finally die if they are not transferred to an acute hospital shortly before their death [1, 2].

It is controversial when palliative care should start during the disease trajectory. However, it is beyond doubt that in advanced dementia stages - when the aim of treatment is no longer focused on stabilization of cognitive functioning nor prolongation of life - provision of comfort-oriented measures in order to maximize quality of life requires palliative care, sometimes even specialized palliative care [3]. Worldwide – and particularly in the Netherlands and Great Britain - several research groups have been focusing on palliative care in dementia. The intersection of palliative care and late-onset dementia (LOD) has been addressed in numerous studies, e.g. the Dutch End of Life in Dementia (DEOLD) study [4], the Implementation of quality indicators in palliative care study (IMPACT) [5] and the Zürich Life and Death with Advanced Dementia (ZULIDAD) study [6]. These studies provide insights into the symptoms and findings observed in advanced and terminal stages of dementia, treatment options, healthcare conditions, quality of life and death, patients’ needs, care goals, reasons and circumstances of death, end-of-life outcomes, attitudes of nursing staff and doctors as well as the needs and problems of relatives, formal and informal caregivers. Various instruments have been validated in order to assess pain, burden, discomfort, and quality of life (e.g. [7]) and have successfully been used as outcome measures [8‐13].

In several countries, guidelines or recommendations have been developed in order to improve the delivery of palliative care for persons with dementia. As an example, the guidelines on dementia of the British National Institute on Clinical Excellence [14] include key palliative care components. The European Association for Palliative Care (EAPC) formulated specific recommendations for palliative care of persons with dementia [3].

Compared to the multifaceted international efforts to evaluate and improve palliative care strategies in dementia, research initiatives and care strategies in Germany are scarce. Initiated by the Robert-Bosch-Stiftung, a Curriculum Palliative Practice for staff that works in old-age care with persons suffering from dementia was developed. The German Society for Palliative Care has established a standardized training of teachers for the “Curriculum Palliative Practice”, though effects of the training have not yet been evaluated.

A few reviews on palliative care and dementia have been conducted by German authors [15]. One study has investigated causes and places of death of persons with dementia in Germany [2]. The authors describe that persons with advanced dementia suffer from several symptoms that may need specialized palliative care, whether it be at home, within a nursing home or in a hospital.

Given the significant lack of research in the field of palliative care and dementia in Germany, it is impossible to give evidence-based recommendations or to even develop and evaluate interventions in order to improve palliative care. Palliative care depends not only on cultural, ethical and social prerequisites but also on legal and financial conditions in different countries. Hence, it is almost impossible to transfer research results, such as those from the numerous, high-quality international studies, to persons with dementia in Germany.

Neither in Germany nor internationally has any research been conducted on palliative care in young onset dementia (YOD), defined by an age at symptom onset before 65 years, who live at home or in long term care (LTC) facilities. Significant differences are expected between YOD compared to late-onset dementia (LOD), such as lower somatic comorbidities in YOD, less frailty, more behavioral and psychological symptoms, different responses to psychopharmacological therapy, different attitudes regarding end-of-life, and higher caregiver burden [16]. However, these hypotheses have yet to be confirmed. Furthermore, most international studies have focused on palliative care provision in LTC settings, leaving little knowledge about palliative care of persons with advanced dementia who receive care at home.

EPYLOGE is a prospective cohort study that includes a baseline visit with the person suffering from dementia and a family caregiver, quarterly phone calls with the family caregivers and a follow-up visit with the family caregiver after the person with dementia has died.

To our knowledge, EPYLOGE is the first study that addresses palliative care issues concerning dementia in Germany. A unique feature of EPYLOGE is its focus on YOD and the comparison between YOD and LOD. Some limitations of the study need to be considered. Firstly, there may be a sampling bias; most patients will be recruited through the memory clinic of a university hospital. Patients who receive treatment from a tertiary care center may not be representative for the general population. However, we believe that recruitment through LTC facilities - as done in most prior studies - generates an even larger sampling bias. That is because some LTC facilities, presumably those who feel that they are deficient in palliative care, may refuse to participate. Secondly, most of the patient-related data will be collected by interviewing family caregivers and nursing staff. These data may be less reliable than desired; however, asking patients with advanced dementia directly about their condition, complaints, etc. would potentially generate less reliable data and is ethically problematic. Thirdly, the first visit might raise awareness in the caregivers and perhaps in the nursing staff. As a consequence, palliative care may be improved. Therefore, a bias should be considered at the post mortem visit. Patients might have received better care at the end of their life and experienced a better quality of death than they would have if they had not been included in part A of EPYLOGE.

In order to avoid wrong conclusions, one must consider the limitations of the study during the interpretation and dissemination of results. EPYLOGE aims to address these limitations throughout the study, allowing for stronger interpretations of results. In summary, EPYLOGE will serve as a basis for the improvement of palliative care in dementia. EPYLOGE also aims to implement strategies and interventions regarding palliative care provision for persons with advanced YOD and LOD. Furthermore, EPYLOGE is a cornerstone of future research in the field of palliative care in dementia.