Author: Laura Bavelaar, MSc Leiden University Medical Center
Date of Publication: May 2021
Keywords: Dementia, Family caregiver, Patient engagement, Shared decision making, End-of-life care, Nursing home
When a person receives a dementia diagnosis, the healthcare professional will aim to ensure the person understands what the diagnosis means for them and provide them with an opportunity to ask questions. “Do you have any questions?” the doctor asks. In that moment, this person may not though questions may arise at a later time point. It is a situation that many will recognise. Others might be afraid to ask the questions they have, for fear of taking up the doctor’s time. Or they doubt whether it is appropriate to ask a doctor about psychological or spiritual issues, for instance (Best et al., 2019).
In these situations, a question prompt list can be helpful. It is a list of example questions that a person with dementia may want to ask, serving as a reminder or checklist to bring to a conversation with a healthcare professional. It is person centred and supports the person with dementia to remain in in control and ensure that issues which matter most to them are addressed (Brandes et al., 2015). Question prompt lists exist for people with a cancer diagnosis, to help support them in advance care planning conversations with healthcare professionals (Walczak et al., 2013).
Advance care planning is also important for people with dementia living in nursing homes (Cornally, 2020). In this case, it is often the family caregiver that represents the person with dementia. mySupport study aims to support family caregivers when they need to make difficult decisions about end-of-life care for their relative with advanced dementia. The study set out to develop a question prompt list for family caregivers of people with dementia that live in a nursing home. We approached family caregivers from five of the countries participating in this study, Canada, Czech Republic, the Netherlands, Republic of Ireland and United Kingdom. Due to strict regulations during the COVID-19 pandemic, it was not possible to conduct this part of the study in Italy. We aimed to develop a question prompt list per country, to meet the needs of contextual factors and differences in the care available (Vlckova, 2020). We provided family carers (n=43, [See table below]) with a short booklet to read independently. The contents of the booklet was evidence-based and contained key information about dementia and end-of-life care. After family caregivers had read the booklet, we provided them with a list of questions that researchers had gathered from existing literature. The family caregivers could select questions from the list provided that they felt were important to ask healthcare professionals and could also contribute their own questions if not already listed.
As the COVID-19 pandemic hit during this process, the family caregivers could not always physically come together. However, this did not prevent them from contributing. Instead, people video called, emailed, phoned or got together in smaller groups for a facilitated group discussion. The groups discussed which questions to include in a question prompt list, and why. The core objective of the prompt list was that the questions would uncover answers for a family caregiver that would support and prepare them for the future. “It’s important to know what you are coming up against”, Family caregiver, Canada. Some questions that we had selected as researchers, did not seem that important to the family caregivers.
Each country developed a question prompt list consisting of 15 to 24 questions. Interestingly, the question: “Can you tell me more about palliative care in dementia?” was incorporated in the question prompt list in all five countries. In addition to this general question, the question prompt lists consisted of several more specific questions. There are questions about dementia and related symptoms, and questions about treatment options. Some of the family caregivers asked about choosing the place or timing of death. There were questions about the care setting, such as nursing home policies and available specialist services, and questions about the care staff. And all family caregivers had questions about how to make sure we all act according to their loved one’s values and wishes, and the roles and responsibilities of the people involved in shared decision making about care.
In conclusion, it is important to engage end-users, in this case family caregivers, in the development of tools that are intended to be used by them. Overall, throughout the consultation process with family caregivers, we found information needs differed between individuals and across countries; there is no one size fits all. However, themes did emerge. Findings from consultations with family caregivers imply that non-medical topics should also be discussed in end-of-life conversations. For example, in each country the question prompt list included questions about patient values and wishes and clarifying roles and responsibilities in shared decision making, indicating it is important to pay attention to psychosocial and non-medical topics in conversations about end-of-life care. Health and social care professionals should encourage and support people with dementia and their family caregivers to engage in conversations about care. Using an appropriate question prompt list designed specifically for people with advanced dementia and family caregivers can be a helpful way to do this.
The Question Prompt Lists are available on request.
Best, M., McArdle, M. B., Huang, Y. J., Clayton, J., & Butow, P. (2019). How and how much is spirituality discussed in palliative care consultations for advanced cancer patients with and without a question prompt list?. Patient Education and Counseling, 102(12), 2208-2213.
Brandes, K., Linn, A. J., Butow, P. N., & van Weert, J. C. (2015). The characteristics and effectiveness of question prompt list interventions in oncology: a systematic review of the literature. Psycho‐Oncology, 24(3), 245-252.
Vlckova, K. The Impact of Contextual Factors on End-of-Life Care in Nursing Homes in the Czech Republic (2020), (available at https://mysupportstudy.eu/the-impact-of-contextual-factors-on-end-of-life-care-in-nursing-homes-in-the-czech-republic/).
Walczak, A., Mazer, B., Butow, P. N., Tattersall, M. H., Clayton, J. M., Davidson, P. M., … & Epstein, R. M. (2013). A question prompt list for patients with advanced cancer in the final year of life: development and cross-cultural evaluation. Palliative medicine, 27(8), 779-788.
Meet the author: Laura Bavelaar, MSc Leiden University Medical Center, PhD student on mySupport study
Laura Bavelaar is junior researcher in Public Health and Primary Care at the Leiden University Medical Center (LUMC). Laura has a background in neuroscience, with a special interest in consciousness and phenomenal awareness. Currently, she is involved in the development and standardisation of materials to support family caregivers of nursing home residents with dementia. Her main focus in this work are cultural differences across countries.