Development of the booklet
The booklet was developed in Canada in 2005, by family physician Marcel Arcand who practiced in nursing homes. He encountered many families of nursing home residents with advanced dementia who were uncertain about what would be the best care for their loved one. In the years before, he had a chance to research how families navigate difficult decisions at the end of life with a qualitative researcher and nurse. Based on practice, research and also personal experience, they wrote this booklet that provides information about dementia and comfort care at the end of life
It appeared that some family would rather delegate medical decision making to the staff (“blind trust”) whereas other family caregivers want to be involved in medical decision making in the nursing home and share responsibilities. In this way, they could contribute to their relative’s quality of life, better understand the course of the dementia, be reassured and be better prepared for their relative’s end of life. However, it also appeared that family caregivers do not always feel capable to be involved in the decision-making process, because of limited knowledge or emotions such as guilt and grief. Family caregivers thus need support. Therefore, the Comfort Care Booklet was developed to answer questions frequently asked by families. Bereaved family caregivers, clinicians and communication experts provided input to improve the booklet.
Availability of the booklet
The original Canadian Comfort Care Booklet was available in both English and French. The booklet has been translated and adapted for use in Italy (2008), Japan (2009), the Netherlands (2009), Northern Ireland (2017), Czech Republic (2017), United Kingdom (2019) and the Republic of Ireland (2020). The Dutch 2009 evaluation version of the booklet was revised in 2011 and the original Canadian Comfort Care Booklet has been updated in 2019. The Comfort Care Booklets are available on request.
Contents of the booklet
The core message of the Comfort Care Booklet is that dementia is a terminal disease and that a palliative approach to care is therefore appropriate. The booklet provides information about the trajectory of the disease and possible complications, options to manage issues such as feeding difficulties and pneumonia, symptom management and comfort care, the decision-making process, the dying process and grief. The various countries in which the Comfort Care Booklet is available differ in their legal frameworks, socio-cultural context and medical standards. The specific content of the booklets therefore differs between the countries. For example, spiritual care may be more or less extensively discussed.
Timing – when to offer the booklet to family caregivers
The preferred time of receiving the Comfort Care Booklet differs between family caregivers. Some prefer to receive the information after the diagnosis of dementia, others shortly after admission into a nursing home, or when goals of care are discussed with healthcare professionals. It is not yet clear when it is the best to engage with Comfort Care Booklet, for whom, and in what situations.
mySupport study and The Comfort Care Booklet
The Comfort Care Booklet is a key element of the mySupport study. The aim of the booklet is to inform family caregivers of the disease progression, to help them actively participate in conversations regarding their relative’s care needs. To complement the Comfort Care Booklet, all countries involved in mySupport study have newly developed a Question Prompt List. This is an overview of questions that family caregivers may have regarding dementia and comfort care. It can serve as a reminder or source of inspiration for family caregivers to ask healthcare professionals the questions that are important to them. In mySupport study, we will evaluate the use of the Question Prompt List and collect feedback about the Comfort Care Booklet. This will inform future updates and further development of the Comfort Care Booklet.