Long-term follow-up in primary progressive aphasia: Clinical course and health care utilisation

Background: Primary progressive aphasia (PPA) is a rare disorder. Data on health care utilisation and care-relevant symptoms are scarce.

Aims: The study aimed at finding out how patients with PPA are cared for, the extent of professional support utilised by family caregivers, and which care-relevant clinical symptoms and signs occur with advanced disease.

Method & Procedures: Forty-three family caregivers of patients with PPA were interviewed with a standardised questionnaire.

Outcomes & Results: A majority of caregivers cared for the patients at home without any support. More than 40% of the patients were treated with cholinesterase inhibitors or memantine. Only 9% of the patients received speech therapy. In advanced PPA, the majority of patients were unable to communicate and almost all needed 24-hr care. Other neurological symptoms appeared, and a considerable number of patients suffered from moderate or severe somatic illnesses.

Conclusion: Future studies are necessary to investigate the reasons why the PPA caregivers hardly utilise informal and formal support, what their specific needs are, and which kind of support and interventions prove to be useful.