Belastungen in der Betreuung von Parkinson-Patientinnen und - Patienten

Abstract

<jats:title>Zusammenfassung</jats:title><jats:p>Patientinnen und Patienten (Pat.) mit Parkinson-Krankheit bedürfen mit zunehmender Krankheitsdauer und Schweregrad persönlicher Betreuung, die meist von weiblichen Angehörigen gewährleistet wird. Die Belastungen für pflegende Angehörige resultieren einerseits aus den motorischen Beeinträchtigungen der Pat., andererseits von neurokognitiven und neuropsychiatrischen Symptomen sowie Verhaltensstörungen, Störungen des autonomen Nervensystems, der Miktion, des Schlafes und der Selbstständigkeit. Gesundheitliche Probleme der Betreuungsperson, u. a. Depression und Angst, emotionale Probleme mit dem Pflegling, Beeinträchtigung des Schlafs, sowie Einschränkungen in persönlichen Anliegen, Beruf, Familie, Freizeitgestaltung, sozialen Aktivitäten, finanzielle Einbußen und mangelhafte soziale Unterstützung stellen weitere Belastungsfaktoren dar. Personen mit dem Risiko einer erheblichen Betreuungsbelastung sind frühzeitig zu identifizieren, um ihnen Informationen über die Krankheit und Unterstützungsmöglichkeiten sowie entsprechende personelle, psychologische und finanzielle Unterstützung zukommen zu lassen.</jats:p>

Caregiver burden in patients with behavioural variant frontotemporal dementia and non-fluent variant and semantic variant primary progressive aphasia

“…Caregivers of bvFTD patients experience more severe CB than caregivers of Alzheimer's disease (AD) patients. On the other hand, caregiver burden in bvFTD seems to be comparable to that in patients with Lewy Body Dementia (LBD), progressive supranuclear palsy (PSP), corticobasal syndrome (CBS) and similar or higher than in Parkinson's Disease (PD) (Ransmayr et al 2018;Ransmayr 2020;Besser and Galvin 2019;Liu et al 2018;Grün et al 2016). Mean ZBI sum scores of caregivers of bvFTD patients in our study (Table 2) were higher compared to published ZBI scores of caregivers for AD patients.…”

Challenges of caregiving to neurological patients

“…Frontal dysexecutive disorders (loss of insight, reasoning, logical thinking, etc. ), behavioral impairment (hyperactivity or apathy, aggression, disinhibition), and neuropsychiatric symptoms such as irritability, anxiety, or depression, paranoic ideation and hallucinations, and communication difficulties are important factors of CB [ 5 , 7 , 25 , 26 , 29 – 32 ]. They may attenuate in late phases of dementing illnesses.…”

“…In late-stage neurological disease, falls, fluctuations of motor functions, complex therapies, repeated injuries, pain, fatigue, nausea, respiratory distress, incontinence, nocturnal sleep impairment, and concomitant diseases markedly deteriorate quality of life and exacerbate CB [ 14 , 30 – 32 , 34 ].…”

“…CB does not only depend on the patient, but also on CG-related factors such as age, sex, health status, quality of sleep, education, occupational obligations versus retirement, information about perspectives of the disease and medical, social, psychological, or legal consequences, personal competences, and supportive measures of the public health systems or private care institutions. Family background, relationship between the CG and the client, space in the patient’s home, socioeconomic parameters, and resilience of the CG [ 7 , 31 , 32 , 34 – 37 ] are further important factors of CB. In most diseases CB increases with disease duration and progression, and with the duration of care.…”

“…In stroke patients, patients suffering from a traumatic injury to the nervous system, and brain tumor patients, CB depends on the severity of functional decline including neuropsychiatric and behavioral deficits and the coherence of caregiving persons. CB is mostly severe in advanced stages of motor neuron disease and brain tumor disease, similar or somewhat milder in atypical parkinsonian syndromes [ 14 , 24 – 26 , 32 ]. Parkinson’s disease is associated with substantial CB in advanced but not in early disease stages, early Alzheimer’s disease with mild to moderate CB [ 7 , 14 , 25 , 26 ] in the first years of the disease.…”