The Work Situation of Personal Assistants for People with ALS (in Swedish only)
- Date
- 9 September 2025, 15:00–17:00
- Location
- University Main Building, Sal IV and online
- Type
- Seminar
- Lecturer
- Birgitta Jakobssen Larsson, Senior Lecturer at the Department of Public Health and Caring Sciences
- Web page
- https://www.uu.se/centrum/forskning-om-funktionshinder/oppna-foredrag
- Organiser
- Center for Disability Studies
- Contact person
- Eva Dieker
- Phone
- 0707509014
The Work Situation of Personal Assistants for People with ALS – Perspectives from the Person Living with the Disease, Relatives, and Personal Assistants
Working as a personal assistant often means working alone in the home of a person who is ill, bearing responsibility, and at times needing to make quick decisions. The workplace is rarely adapted for the advanced care that needs to be provided, and consideration often has to be given to other family members, such as children who also live in the home. In the care of people with the neurodegenerative disease ALS, relatives often play a central role in the person’s life, and it is not uncommon for a family member to become a personal assistant. However, due to the progressive nature of the disease, the need for help and support changes over time, and the personal assistant must continuously develop their knowledge in order to provide the best possible support.
This presentation is about a research project aimed at generating new knowledge about the work situation of personal assistants (both relatives and externally employed assistants), which can ultimately contribute to the development of new recommendations and guidelines regarding training and support. This, in turn, may help increase safety and quality of life for the personal assistant, the person living with ALS, and their family throughout the progression of the disease.
Link to sign up to the event: https://cff.ungapped.io/Surveys/a9a6282d-18a7-48c8-bff0-d2dc471c97c4