O2–05–01: The social experiences of spouses of persons with young‐onset dementia (YOD): Social change, support and resiliency
Notice bibliographique
Résumé
Young-onset dementia (YOD; onset before 65) accounts for approximately 5–9% of the total dementia population. The majority of caregiving is provided on an informal basis, often by the affected person's spouse. There is little qualitative interview research that has focused specifically on the social experiences of YOD spousal caregivers, and none within the Canadian context. The purpose of this study was to explore the social experiences of spouses of persons with YOD within the Canadian context. In this descriptive, qualitative study, semi-structured, face-to-face interviews were conducted to explore the nature of spouses' social experiences. Participants were recruited through Alzheimer Society Chapters in Ontario. Ten YOD spousal caregivers living in Ontario participated. Interviews included open-ended questions on social experiences such as recreational activities and social change. Interview transcripts were coded using NVivo 9 and analyzed using inductive content analysis. Participants (6 females, 4 males) had a mean age of 55 (sd=6.45), and all were currently employed. Persons with YOD had a mean age of 61 (sd=4.33). One spouse was currently working, and three were living in a long-term care home. Qualitative analysis revealed four emergent themes relevant to social experiences: giving up activities in favour of new activities, sources of social support, adapting and maintaining social and recreational activities, and social spaces as safe spaces. Participants frequently described giving up social and recreational activities due to fear of leaving their spouse home alone. Participants discussed adapting social and recreational activities in order to include their spouse, or simply to accommodate their caregiving obligations. Additionally, many participants cited experiences where their friends and family had avoided them and their spouse, or treated their spouse with YOD as though they were non-existent. New themes included giving up activities in favour of new activities and social spaces as safe spaces. Results highlight the complex nature of these social experiences, and ultimately challenge our theoretical understanding of the dementia caregiver experience. Additionally, these findings carry practical significance; results provide specific suggestions for improvement of social services focused on caregiver support.
Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.
Comment cette classification a été obtenuedéplier
Prédiction machine sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Le volet Gemma est une étiquette directe du modèle pour chaque travail de la base, lue sur la notice réduite au titre. Le volet Codex est un classifieur appris des 10 348 étiquettes directes de Codex et calibré sur les taux pondérés de l'échantillon; les champs sans appui suffisant ne portent aucun appel Codex. Le mode candidate est l'union des deux volets; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont pas des étiquettes humaines.
Scores du classifieur distillé par catégorie (deux têtes)
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,001 | 0,002 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,000 | 0,001 |
| Études des sciences et des technologies | 0,008 | 0,003 |
| Communication savante | 0,002 | 0,001 |
| Science ouverte | 0,001 | 0,003 |
| Intégrité de la recherche | 0,000 | 0,001 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,003 | 0,000 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule source (Gemma direct ou Codex distillé), pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».