Att leva med Parkinsons sjukdom : med fokus på konsekvenser i dagligt liv för kvinnor och män

Sammanfattning: Parkinson’s disease (PD) is a common, progressive neurodegenerative disorder. It is characterized by motor symptoms, such as stiff muscles, slowness of movements, tremor, gait and balance difficulties, and also by non-motor symptoms such as depression, sleeping disorders, fatigue, sexual dysfunction, cognitive decline and pain. In an advanced stage of the disease, dementia can be developed. The disease occurs in all ethnic groups and affects both women and men. In 2016, the world wide prevalence of PD was estimated to 6.1 million people (2.9 million women, 3.1 men). In Sweden there are currently about 20 000 persons diagnosed with PD. There is no cure for PD. The main goal of treatment is for the patient to achieve best possible quality of life. The basic treatment for PD is oral medication, but for some, with a more advanced disease, alternative ways to distribute medicine, and/or neurosurgery (deep brain stimulation, DBS) may be an alternative. Today, there is an increasing awareness of the need of medical research, based on sex/gender. Among those living with PD, more men than women undergo highly specialised treatment with neurosurgery, even though women after surgery experienced greater benefit in ADL, in emotions and in social life. In a progressive disease as PD, changes in ADL can appear both suddenly and gradually. Earlier studies have shown that PD affects ADL already in an early stage of the disease, and also that maintenance of activities is important for well-being in daily life.The overall aim of this thesis was to gain knowledge of daily life among women and men with Parkinson’s disease and to explore how they relate to and manage aspects of consequences of the disease. The specific aims were to investigate how persons with moderately advanced Parkinson’s disease manage consequences of the disease in their daily life, how they reason about DBS as a treatment alternative, to evaluate the development of ADL over time in persons living with PD, from the time of diagnosis up to eight years, and finally, to explore similarities and differences among women and men.Method: Qualitative interviews were conducted with 24 persons with PD (PwPD), 14 men and 10 women. The interviews were analysed according to Grounded Theory (GT). Comparisons between patterns in men and women were made. The quantitative study included 129 PwPD from the NYPUM project (Ny Parkinsonism in UMeå). Data from baseline assessment, and then from follow-ups at one, three, five and eight years have been used. Participants estimated their ability to perform daily activities based on the ADL-taxonomy. Data have been analysed statistically with respect to development over time, as well as differences between men and women. Linear Mixed Model was chosen for analyses.Results: To achieve the best possible everyday life, in spite of the difficulties PD caused, it was important for the participants to adapt to their medication regime and also to ongoing changes in their abilities. The interviewees tried to think in a positive way, prioritize among social relations and activities, to take advantage of positive environments and to exercise physically. Participants had a good knowledge of DBS as an alternative treatment method although it was not their choice at the actual time point. They worried about the neurosurgical procedure and were hesitant about the outcome of DBS. The treatment was seen as a step-way process, and DBS was seen as the last option. In the quantitative study, nine out of 12 activity domains showed a statistically significant change over time. Seven of these were basic, needed to be performed almost every day. The two remaining ADL-domains (Shopping and Cleaning) also showed a statistically significant difference between women and men, showing that women experienced a higher degree of detoriation. Those 32 remaining at eight years, still fulfilling the ADL-taxonomy, did not seem to experience that PD had a big impact on their ADL-ability. Overall, in these studies, there were more similarities than differences between women and men.Discussion: Our results support the importance of PwPD maintain routines regarding food, medicine and daily activities, adapt their way to perform tasks, and engage in meaningful and values activities as a way to achieve a good, daily life. Occupational therapists with good knowledge in PD could contribute in facilitating to use this strategies. Concerning DBS, the participants had comparatively low expectations on the outcome. This might be explained by a high level of education and a high percentage being member in a PD-society. Of the nine ADL domains showing change over time, seven were likely to be needed to be performed every day (e.g. Mobility and Dressing). The two remaining, (Shopping and Cleaning) are activities that are challenging for PwPD. They are also such activities where it is generally known that there are differences between women and men.Conclusion: Various aspects of activity appear to be important factors in the assessment, treatment and follow-up of PwPD. Meaningful activities, adapting the way of performing various tasks, as well as a functioning schedule based on food, medicines and activity are important elements in the strive for a good daily life. Deep brain stimulation (DBS) seems to be considered as the last step in a step-by-step approach to treatment options. Those who still perform self-assessment according to the ADL taxonomy at eight years follow-up, do not seem to experience that PD have a major impact on their perceived ability. The results also implies that men and women have a similar development over time regarding ADL ability and that they reason in a similar way with regard to strategies for achieving good daily life and about deep DBS as a treatment option.