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

The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details. Identifier: NCT01441726
Recruitment Status : Completed
First Posted : September 28, 2011
Last Update Posted : March 31, 2015
Information provided by (Responsible Party):
René Verreault, Laval University

Brief Summary:

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.

Condition or disease

Study Type : Observational
Actual Enrollment : 175 participants
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
Study Start Date : September 2012
Actual Primary Completion Date : October 2014
Actual Study Completion Date : October 2014

Resource links provided by the National Library of Medicine

Training of staff
No training of staff

Primary Outcome Measures :
  1. 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)

  2. 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).

Information from the National Library of Medicine

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Ages Eligible for Study:   Child, Adult, Older Adult
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

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its identifier (NCT number): 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

Responsible Party: René Verreault, Professeur titulaire, Laval University Identifier: NCT01441726     History of Changes
Other Study ID Numbers: MOP-114881
First Posted: September 28, 2011    Key Record Dates
Last Update Posted: March 31, 2015
Last Verified: March 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