[State of knowledge: the experience of people living with neurocognitive disorders in Quebec]
Foin G
Record ID 32018005536
French
Original Title:
État des connaissances - Expérience des personnes qui vivent avec un trouble neurocognitif au Québec
Authors' objectives:
The Institut national d'excellence en santé et en services sociaux (INESSS) organized a
consultation of people living with a neurocognitive disorder (NCD) and family caregivers
(FC) to gather experiential and contextual data. The aim was to explore these users'
experience of care and services in Quebec. As symptomatology is heterogeneous and
may involve different pathologies, the scientific team targeted Alzheimer's disease (AD)
among the best-known neurodegenerative diseases, as it is the most frequent cause of
major NCDs that compromise the quality of life of people living with this disease and that
of FCs.
Authors' results and conclusions:
MAJOR FINDINGS:
Based on the literature and the consultations conducted, a number of findings emerged.
Some people living with AD and FCs have difficulty keeping track of their disease. This
has numerous consequences in terms of quality of life, care, and services. The difficulties
encountered in training and raising awareness of the reality of the AD condition within the
health and social services system can add to the burden of the disease for sufferers and
FCs. Patient associations and community organizations also offer support to improve the
quality of life of people affected by the disease, but these services are limited or subject
to eligibility criteria.
The announcement of the diagnosis can create socio-affective difficulties. The name
Alzheimer's disease is stigmatizing for people living with AD, as it is associated with
stereotypical images. Fearing the gaze of others, some sufferers hide their condition or
limit their social interactions with family members, friends, neighbors and so on. It is at
this point that the need for psychological support is raised, as it could limit the social
isolation of people living with AD, maintain their quality of life, and enable them to learn
about the role and responsibilities of family caregivers. Current treatments are limited, and the efficacy of drugs currently on the market is
modest. For some patients, experimental clinical research appears to be a solution that
will enable them to participate in the advancement of research targeting a curative or
supportive treatment for Alzheimer's disease.
Authors' methods:
A brief review of the scientific and grey literature, in French and English, on the quality of
life and care experience of people living with the disease and those close to them was
conducted. Recognized experiential themes were used to develop a consultation with
patients. Out of twenty-nine participants, two people living with AD and four FCs took part
in the focus group. The number of people interviewed was small and not representative
of the Quebec population affected by AD, but the consultation was developed on the
basis of certain characteristics that support a diversity of experiences with Alzheimer's
disease. The meeting was recorded and transcribed for reporting purposes, then a
thematic analysis was conducted based on themes identified in the literature.
Details
Project Status:
Completed
Year Published:
2024
URL for published report:
https://www.inesss.qc.ca/publications/repertoire-des-publications/publication/experience-des-personnes-qui-vivent-avec-un-trouble-neurocognitif-au-quebec.html
English language abstract:
An English language summary is available
Publication Type:
Other
Country:
Canada
Province:
Quebec
MeSH Terms
- Alzheimer Disease
- Neurocognitive Disorders
- Caregivers
- Quality of Life
- Family Support
Contact
Organisation Name:
Institut national d'excellence en sante et en services sociaux
Contact Address:
L'Institut national d'excellence en sante et en services sociaux (INESSS) , 2021, avenue Union, bureau 10.083, Montreal, Quebec, Canada, H3A 2S9;Tel: 1+514-873-2563, Fax: 1+514-873-1369
Contact Name:
demande@inesss.qc.ca
Contact Email:
demande@inesss.qc.ca
Copyright:
L'Institut national d'excellence en sante et en services sociaux (INESSS)
This is a bibliographic record of a published health technology assessment from a member of INAHTA or other HTA producer. No evaluation of the quality of this assessment has been made for the HTA database.