Financial, Legal, and Functional Challenges of Providing Care for People Living With Dementia and Needs for a Digital Platform: Interview Study Among Family Caregivers
Notice bibliographique
Résumé
BACKGROUND: Alzheimer disease and Alzheimer disease-related dementia represent complex neuropathologies directly challenging individuals, their families, and communities in the United States. To support persons living with dementia, family or informal caregivers often encounter complex financial, psychological, and physical challenges. A widely used solution such as a consolidated web-based assistance or guidance platform is missing, compounding care challenges. OBJECTIVE: In preparation for designing an internet-based artificial intelligence-driven digital resource platform, a qualitative interview study was conducted to characterize the challenges and needs of family caregivers in the United States. METHODS: A semistructured interview topic guide in English was developed by engaging community partners and research partnerships. Family caregiver participants were purposefully recruited via various means, such as word of mouth, local dementia community service providers, digital recruitment emails, flyers, and social media. Interested individuals were first invited to complete an eligibility screening survey, and eligible individuals were then contacted to arrange a web-based in-depth interview via Zoom (Zoom Video Communications) from January 1, 2022, to May 31, 2022. A follow-up survey was administered in May 2022 to provide an overview of the participants' demographics, socioeconomic characteristics, and caregiving information. Thematic analysis in a framework approach was used to identify and organize themes and the study findings. RESULTS: Following the prescreening of 150 eligible respondents, 20% (30/150) individuals completed both the interviews and follow-up survey, allowing for an in-depth look into the challenges, experiences, and expectations of primary caregivers of people living with dementia. Most participants (20/30, 67%) were primary caregivers of persons with dementia, and 93% (28/30) had provided care for at least a year. Most participants were aged >50 years (25/30, 83%), female (23/30, 77%), White (25/30, 83%), and non-Hispanic (27/30, 90%) and held a bachelor's or graduate degree (22/30, 73%). Collectively, all participants acknowledged challenges in caring for people living with dementia. Thematic analyses elicited the challenges of caregiving related to functional care needs and financial and legal challenges. In addition, participants identified the need for an integrative digital platform where information could be supplied to foster education, share resources, and provide community support, enabling family caregivers to improve the quality of care and reducing caregiver burden. CONCLUSIONS: This study emphasized the difficulties associated with the family caregiver role and the expectations and potential for a supportive web-based platform to mitigate current challenges within the caregiving role.
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 distillée sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Apprise à partir de 10 348 étiquettes directes de Codex et de 10 348 étiquettes directes de Gemma. Le mode candidate est l'union des têtes enseignantes seuillées; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont ni des étiquettes humaines ni des étiquettes directes de modèles de pointe.
Scores Codex et Gemma par catégorie
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,000 | 0,000 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,000 | 0,000 |
| Études des sciences et des technologies | 0,000 | 0,000 |
| Communication savante | 0,000 | 0,000 |
| Science ouverte | 0,000 | 0,000 |
| Intégrité de la recherche | 0,000 | 0,000 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,000 | 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 tête enseignante, 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 ».