Refine
Year of publication
- 2021 (2) (remove)
Document Type
- Article (1)
- Doctoral Thesis (1)
Has Fulltext
- yes (2)
Is part of the Bibliography
- no (2)
Keywords
- Dementia (2) (remove)
Institute
Publisher
- Hogrefe (1)
Frontotemporal lobar degeneration (FTLD) is likely to be the second-most common cause of dementia in individuals under 65 years of age. Pathognomonic changes in personality, behavior and motivation are known to lead to high caregiver stress and burden, with little support being available. The aim of this work is to present the current state of knowledge on the characteristics, challenges and unmet needs of caregivers as well as on possible interventions.
Two scoping reviews on caregiver burden using the PRISMA checklist for scoping reviews were conducted using PubMed, Web of Science and ScienceDirect in April 2017 and November 2019, respectively. A total of 107 articles were considered eligible and were analyzed qualitatively and summarized.
Our results show that caregivers of patients with FTLD are often female, spouses of the PwD, younger in age, have underage children and provide care at home. Behavioral and motivational disturbances in the PwD are perceived to be the most burdensome aspects of caregiving. Those caring for an individual with the bvFTD subtype thus report higher levels of burden than caregivers of an individual with a form of PPA. With rising dementia severity, caregivers report higher levels of burden. Many caregivers experience a decline in their own physical and mental health as well as a significant financial burden resulting from care duties. The deterioration of the relationship between the PwD and their caregivers is a main burdensome aspect. Only few interventions were conducted so far, and none of those that were identified were designed as an RCT. The most efficacious interventions were those aimed directly at caregivers, whereas interventions aiming at the amelioration of symptoms in the PwD showed little effect.
Further research should reproduce and validate efficacious interventions and establish new interventional approaches. Another focus should be set on the situation of underage children of individuals with FTLD and relatives of a person with hereditary FTD. More research from non-Western countries is needed in order to identify culture-specific factors of caregiver burden. Along those lines, support structures for FTLD caregivers should be assessed on a local basis and extended accordingly. So far, no study has assessed the relationship between caregiver burden and possible consequences for the quality of care provided to the PwD in FTLD specifically. Awareness both in the wider population and among healthcare professionals is an urgent need for the future since FTLD is often misdiagnosed, leading to a delay in obtaining the correct diagnosis and access to suitable support.
Hintergrund: Menschen mit Demenz (MmD) zu versorgen, fordert Gesundheitssystem und pflegende Angehörige heraus und ist nur durch interprofessionelle medizinische und pflegerische Betreuung zu bewältigen. Fragestellung / Ziel: Die AHeaD-Studie untersuchte Einstellungen von Hausärzt_innen (HÄ) und Pflegefachpersonen (PFP) zur Übertragung bislang hausärztlich ausgeführter Tätigkeiten an PFP in der ambulanten Versorgung von MmD. Methoden: In vier Fokusgruppendiskussionen mit 10 HÄ und 13 PFP wurden Einstellungen zur Übertragung bestimmter Tätigkeiten inhaltsanalytisch untersucht sowie Chancen und Barrieren einer Einführung identifiziert. Ergebnisse: HÄ befürworteten die Übertragung bestimmter Tätigkeiten wie Blutentnahmen, Assessments, deren Monitoring oder Folgeverordnungen für Pflegehilfsmittel. „Klassische“ ärztliche Aufgaben (z. B. Diagnostik von Erkrankungen, Erstverordnung von Medikamenten) wurden weiter in hausärztlicher Hand gesehen. PFP forderten für die Beziehung zwischen PFP und HA mehr Wertschätzung und Anerkennung und bemängelten fehlendes Vertrauen sowie unzureichende Kommunikation. Beide Seiten verwiesen auf knappe Zeitbudgets, die sich kaum am reellen Bedarf der MmD orientierten. Schlussfolgerung: Die Umsetzung einer Aufgabenneuverteilung erfordert die Schaffung eines gesetzlichen und finanziellen Rahmens, zeitlicher Ressourcen, konkreter Aufgabenbeschreibungen sowie die stärkere Zusammenarbeit der involvierten Berufsgruppen. Innovative Konzepte könnten zum sinnvollen Einsatz der Ressourcen beider Berufsgruppen beitragen und die Versorgung von MmD stärken.