Comfort Care at the End of Life for Persons with Alzheimer’s Disease or Other Degenerative Diseases of the Brain – A Guide for Caregivers


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A physician and a nurse from the University of Sherbrooke, Canada, are the authors of this booklet. Marcel Arcand is a professor of Family Medicine who has worked for more than 30 years in different geriatric settings including an Academic Nursing Home. Chantal Caron is an assistant professor of Nursing and owns a PhD degree in qualitative research.

The booklet is a follow-up of their qualitative research project about the perspective of family caregivers in end-of-life decision making in dementia and a response to the identified need of families for information and emotional support in this situation.

The booklet answers frequently asked questions by families about trajectory of disease, clinical issues, decision making process, symptom management of end of life in dementia, what to expect while patient is dying, and grief. It is informative so that decision-makers can better understand the risks and benefits of care options and actively participate in decision-making.

The booklet was developed in accordance with recent literature and current expert opinions. It was reviewed and improved following comments by recently bereaved family members, fellow clinicians, and communication experts. The Clinical Ethics Committee from the Institut Universitaire de Gériatrie de Sherbrooke approved its final version.

*A PDF and a french version of this booklet are also available (non-printable pdf files).


Marcel Arcand, M.D., M. Sc. Pharmacology and Chantale Caron, Ph. D. Nursing Science