Thinking ahead: supporting family caregivers of nursing home residents with dementia in advance care planning

Bavelaar-von Oerthel, L. (2023)

Doctoral Thesis

Dementia is a progressive, life-limiting disease. A palliative approach to care, that focuses on the quality of life of people with dementia and their relatives, is therefore indicated. Advance care planning is core to palliative care. Relatives play a major role in this, because people with dementia often become unable to indicate their preferences for future care. Palliative dementia care is still sub optimally implemented, however.

Nursing home staff and relatives of people with dementia need information about dementia and palliative care to ensure it is optimally implemented. Also, ongoing communication between everyone involved in the care of a person with dementia is required, including discussions about future care needs. This facilitates a palliative care approach in dementia. 

These conclusions result from a survey among elderly care physicians, a systematic review, care plan data in nursing homes and an intervention study in two nursing homes: the mySupport study. It appears that relatives want timely information about the end of life with dementia. That way they can prepare. Although physicians are usually the ones who educate relatives, nursing staff often have a stronger relationship with relatives. After training, they can play an important role in providing information.

• Decision aids
• Education
• End of life
• Geriatrics
• Health communication
• Neurodegenerative diseases
• Palliative care
• Patient engagement
• Shared decision making
• Terminal care

• All authors: Bavelaar-von Oerthel, L.
• Supervisor: Achterberg, W.P.
• Co-supervisor: Steen, J.T. van der; Visser, M.
• Committee: Linden, Y.M. van der; Block, L. van den; Caljouw, M.A.A.; Meijers, J.M.M.
• Qualification: Doctor (dr.)
• Awarding Institution: Faculty of Medicine, Leiden University Medical Center (LUMC), Leiden University
• Date: 2023-02-28
• ISBN (print): 9789464691573
• Sponsorship: The studies presented in this thesis were funded by the Netherlands Organisation for Health Research and Development (ZonMw) program Memorabel grant number 733051084 under the aegis of the EU Joint Programme - Neurodegenerative Disease Research (JPND) - www.jpnd.eu.