[State of knowledge: the experience of people living with neurocognitive disorders in Quebec]
Record ID 32018005536
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.
Project Status: Completed
URL for project: https://www.inesss.qc.ca/publications/repertoire-des-publications/publication/experience-des-personnes-qui-vivent-avec-un-trouble-neurocognitif-au-quebec.html
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
- Alzheimer Disease
- Neurocognitive Disorders
- Quality of Life
- Family Support
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: email@example.com
Contact Email: firstname.lastname@example.org
Copyright: L'Institut national d'excellence en sante et en services sociaux (INESSS)
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