Facilitators
Pille Taba
Liis Kadastik-Eerme
Ülle Krikmann
Marika Rosenthal
About the course
Parkinson’s disease (PD) may impact caregivers’ day to day life and make some daily routines more burdensome. Having a positive attitude to life and maintaining an active daily routine adapting daily activities as much as possible is vital for the management of PD in the long term (3 hours).
Learning Objectives
Comprehend what caregiving entails.
Understand the rights and needs of caregivers.
Be educated in basic caring skills.
Become aware of interventions aiming to reduce the burden and distress of the caregiver.
Understand the role of support groups.
Summary & Scheduling
Parkinson’s disease (PD) may impact caregivers’ day to day life and make some daily routines more burdensome. Having a positive attitude to life and maintaining an active daily routine adapting daily activities as much as possible is vital for the management of PD in the long term (3 hours).
Learning Content
Attitude: Become aware of stress factors and the fact that caregivers’ emotions need special attention. Grasping the importance of looking after oneself as a carer: avoiding burn out, accepting outside help and sharing the caring tasks.
Knowledge: Participants will know:
• Caregiver and caregiving concepts and definitions
• The rights and needs of caregivers
• the role of support groups that may ease the caregiver burden
Skills: Participants will be able to recognise and address caregivers’ burden. Practical advice and tips on basic caring skills to prevent burn out and reduce the distress of the caregiver.
Teaching Methods
• Presentation (slides)
• Video component
• Reading materials
Literature
• Boersma, I., Jones, J., Coughlan, C., Carter, J., Bekelman, D., Miyasaki, J., ... & Kluger, B. (2017). Palliative care and Parkinson's disease: caregiver perspectives. Journal of Palliative Medicine, 20(9), 930-938.
• Lokk, J., & Delbari, A. (2012). Clinical aspects of palliative care in advanced Parkinson’s disease. BMC palliative care, 11(1), 20.
• Miyasaki, J. M., & Kluger, B. (2015). Palliative care for Parkinson’s disease: has the time come? Current neurology and neuroscience reports, 15(5), 26.
• Abernethy, A. P., Currow, D. C., Fazekas, B. S., Luszcz, M. A., Wheeler, J. L., & Kuchibhatla, M. (2008). Specialized palliative care services are associated with improved short-and long-term caregiver outcomes. Supportive Care in Cancer, 16(6), 585-597.
• Bédard, M., Molloy, D. W., Squire, L., Dubois, S., Lever, J. A., & O'Donnell, M. (2001). The Zarit Burden Interview: a new short version and screening version. The Gerontologist, 41(5), 652-657.
• Zarit, S. H., Reever, K. E., & Bach-Peterson, J. (1980). Relatives of the impaired elderly: correlates of feelings of burden. The gerontologist, 20(6), 649-655.
• Martínez‐Martín, P., Forjaz, M. J., Frades‐Payo, B., Rusinol, A. B., Fernández‐García, J. M., Benito‐León, J., ... & Catalán, M. J. (2007). Caregiver burden in Parkinson's disease. Movement disorders, 22(7), 924-931.
• Martinez-Martin, P., Rodriguez-Blazquez, C., Forjaz, M. J., Frades-Payo, B., Agüera-Ortiz, L., Weintraub, D., ... & Chaudhuri, K. R. (2015). Neuropsychiatric symptoms and caregiver's burden in Parkinson's disease. Parkinsonism & Related Disorders, 21(6), 629-634.
• Macchi, Z. A., Koljack, C. E., Miyasaki, J. M., Katz, M., Galifianakis, N., Prizer, L. P., ... & Kluger, B. M. (2019). Patient and caregiver characteristics associated with caregiver burden in Parkinson's disease: a palliative care approach. Annals of palliative medicine.
• Prizer, L. P., Kluger, B. M., Sillau, S., Katz, M., Galifianakis, N., & Miyasaki, J. M. (2019). Correlates of spiritual wellbeing in persons living with Parkinson disease. Annals of Palliative Medicine, 9(Suppl 1), S16-S23.
• Fox, S., Azman, A., & Timmons, S. (2020). Palliative care needs in Parkinson’s disease: focus on anticipatory grief in family carers. Annals of Palliative Medicine, 9 (Supplement 1), 34-43.
• InfoPark and EduPark Infosheets.
Assessment
• Presentation (slides)
• Video component
• Reading materials