Abstract
Our interdisciplinary mixed-methods exploratory study was aimed at gaining empirical data on the medical and nursing demands of residents who are in a late stage of Parkinson Disease (PD) and are cared for in residential homes in Salzburg (Austria). In earlier studies it has been concluded that symptom burden of late stage PD patients is similar to or even higher compared with oncological patients. However, although all nine residents who took part in our study had severe limitations in performing their daily activities and experienced enormous restrictions in their mobility, they were quite content with their present living situations and did not show significant symptom burden. From the ethnographic family interviews that we conducted the following features emerged: a strong closeness in the family, an improved quality of life when the patients lived in the nursing home and fears about the future. Therefore, we concluded that living in a nursing home that provides for the needs of these patients is the best option for PD patients in the final stages of their disease as well as for their relatives.
Highlights
Parkinson’s Disease (PD) is the second most frequent neurodegenerative disease worldwide
The subject of residents who suffer from late stage PD and are cared for in nursing homes is internationally under researched
Few empirical data are available on residents with PD Hoehn and Yahr stage 4 or higher who are cared for in residential homes [e.g., [19]]
Summary
Parkinson’s Disease (PD) is the second most frequent neurodegenerative disease worldwide. It is estimated that between seven and 10 million people worldwide are living with PD [1]. It has been estimated that the number of people who are older than 50 years and are diagnosed with PD will rise considerably from 4.1 to 4.6 million in 2005 to 8.7–9.3 million in 2030 [3]. Bach et al predicted that the number of people who will be affected by PD in 27 European countries, the US and Canada will increase by a factor of 1.6 between 2010 and 2035 [4]. In people who are 65 years or older the diagnosis of PD is a strong determining factor of long-term institutionalization, even when other chronic conditions and socio-demographic parameters are taken into account [7]. Among male patients with PD 30% live in an institution and among female patients even 40 % [7]
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