Support needs in Carers of People with Parkinson’s from early to later stages: A qualitative study with 36 carers in 11 European countries

Background: Parkinson’s Disease (PD) is associated with considerable carer burden, but there has been little qualitative research on the support needs of carers of People with Parkinson’s (PwP).

Methods: Semi-structured in-depth interviews with carers of PwP in 11 European countries.

Results: Interviews with 36 carers of PwP were analysed. At the time of diagnosis, carers often felt that they had a role in helping get a diagnosis and then in dealing with the impact of the diagnosis on the family. Information on medication was seen as particularly important for carers, and many of the carers that their informational needs differed from that of the PwPs. Many of the carers also felt that they needed to be present at all appointments to request referrals or ask for medication changes. Carers of those in the later stages of the disease often reported feeling isolated and not having any time for themselves.

Conclusions: The involvement of carers should be addressed more actively in the management of Parkinson’s.