title: Palliative care nursing for patients with neurological diseases: what makes the difference?
abstract: Neurodegenerative diseases progress slowly, creating increasing physical disability with unpredictable disease trajectories. The disease's life-threatening nature often places these patients in palliative care. There are several factors that complicate the care of patients with neurodegenerative diseases in palliative care units. Owing to physical impairments, there are many communication barriers between patients and staff. Nurses are not able to duplicate the patient's meticulous daily routine leading to caregiver mistrust in the nurse's competencies. Even if the patient is hospitalised, caregivers may not take the much-needed time off to recuperate. The placement of patients with neurodegenerative diseases in palliative care is confusing, since they rarely die during in-hospital treatment but might even get better due to multidisciplinary treatment. Finally, patients and caregivers lack adequate knowledge about disease progression and available help and support programmes. Patients with neurodegenerative diseases urgently need palliative care and nurses and caregivers need better preparation to appropriately deal with these diseases.
authors.affiliation: Research Associate, Institute of Nursing Science and Practice, Paracelsus Medical University, Salzburg, Austria.
authors.forename: Anna
authors.initials: A
authors.lastname: Dieplinger
authors.affiliation: Research Associate, Institute of Nursing Science and Practice, Paracelsus Medical University, Salzburg, Austria.
authors.forename: Firuzan Sari
authors.initials: FS
authors.lastname: Kundt
authors.affiliation: Professor for Palliative Care and Professor for Neurology, Institute of Nursing Science and Practice, Paracelsus Medical University, Salzburg, Austria.
authors.forename: Stefan
authors.initials: S
authors.lastname: Lorenzl
mesh_terms: D017028:Caregivers; D064946:Hospice and Palliative Care Nursing; D006801:Humans; D019636:Neurodegenerative Diseases / Q000451:nursing*; D024802:Nurse's Role; D009723:Nurse-Patient Relations; D011368:Professional-Family Relations; D035502:Trust
keywords: Cancer; Caregiver burden; Differences in care; Neurodegenerative diseases; Palliative care