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Palliative and End-of-life Care in Advanced Dementia: Evaluation of a Program of Organization of Care in Long-term Care

This study has been completed.
Information provided by (Responsible Party):
René Verreault, Laval University Identifier:
First received: September 7, 2011
Last updated: March 30, 2015
Last verified: March 2015

Rationale: In Canada, as in most industrialized countries, Alzheimer's disease and other related dementia are increasingly prevalent in older people. At an advanced stage, institutionalization in a long-term care (LTC) setting will be the fate of a majority of patients. A structured palliative care approach is increasingly used for cancer patients, but is still rarely accessible in LTC institutions for older people with advanced or terminal dementia. This approach should include a more systematic detection and treatment of pain and other physical and psychological symptoms during the last weeks of life, as well as better communications between patients, families and care staff, particularly relating to advanced care directives. Objectives: The general objective of this study is to implement and evaluate a multidisciplinary and multidimensional program of palliative and end-of-life care for older persons with terminal dementia in LTC facilities. Methodology: The intervention program will include five components:

  1. daily involvement of a nurse from the regular staff in the LTC facility as a change agent;
  2. awareness sessions with administrators and staff on the importance of high quality palliative care in dementia;
  3. a training program for physicians and all the staff involved in direct care of patients;
  4. systematic discussions with families and distribution to families of a document on different aspects of palliative care in dementia;
  5. systematic clinical care by regular staff for the control of pain, respiratory symptoms and mouth care. The program will be implemented in two LTC settings (one in Quebec City and one in Sherbrooke, Quebec, Canada), and results will be compared with the LTC control settings where usual care will be applied without implementation of the program.


Study Type: Observational
Study Design: Time Perspective: Prospective
Official Title: Palliative and End-of-life Care in Advanced Dementia: Evaluation of a Program of Organization of Care in Long-term Care Settings

Resource links provided by NLM:

Further study details as provided by René Verreault, Laval University:

Primary Outcome Measures:
  • Family satisfaction with terminal care [ Time Frame: 1 year ]
    Family Perception of Care Scale (FPCS): 25-item validated instrument including 4 components, yielding a score from 25 (negative perception) to 175 (highest positive perception of quality of palliative care)

  • Comfort scale in last two weeks of life [ Time Frame: 2 weeks ]
    Comfort Assessment in Dying with Dementia (CAD-EOL): 14-item validated instrument including 4 sub-scales, yielding a score from 14 (low comfort level) to 42 (highest comfort level).

Enrollment: 175
Study Start Date: September 2012
Study Completion Date: October 2014
Primary Completion Date: October 2014 (Final data collection date for primary outcome measure)
Training of staff
No training of staff


Ages Eligible for Study:   Child, Adult, Senior
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population
Residents in long term care settings

Inclusion Criteria:

Residents with advanced dementia with a score of 7 on the Reisberg scale

  Contacts and Locations
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Please refer to this study by its identifier: NCT01441726

Canada, Quebec
Centre de santé et de services sociaux de la Vieille Capitale
Quebec City, Quebec, Canada, G1S 2A4
Sponsors and Collaborators
Laval University
  More Information

Responsible Party: René Verreault, Professeur titulaire, Laval University Identifier: NCT01441726     History of Changes
Other Study ID Numbers: MOP-114881
Study First Received: September 7, 2011
Last Updated: March 30, 2015

Keywords provided by René Verreault, Laval University:
Advanced dementia
Terminal care

Additional relevant MeSH terms:
Brain Diseases
Central Nervous System Diseases
Nervous System Diseases
Neurocognitive Disorders
Mental Disorders processed this record on September 21, 2017