How Canadian caregivers of persons living with dementia are managing in a fragmented system
Notice bibliographique
Résumé
People living with dementia (PLWD) often need many different health and social services throughout their journey, and navigating and accessing these services can be challenging due to a lack of integration in dementia care. PLWD often rely on caregivers, usually family members, to help them navigate the system and access the care and services they need. The importance of better co-ordination and integration of health, community, and residential dementia services has been highlighted in the World Health Organization’s (WHO) global action plan on the public health response to dementia and Canada’s National Dementia Strategy, however a widespread, robust plan for integrated care for PLWD has yet to be implemented. This leaves caregivers with the task of seeking out and accessing services on their own. The Alzheimer Societies across Canada aim to help caregivers navigate and access services by providing information, education, and support in system navigation to caregivers. In this study, we explored the experiences of caregivers accessing health and social services for their loved ones with dementia, and the role that the Alzheimer Society played in this journey. This work has been informed and guided by members the Alzheimer Society of Canada’s People with Lived Experience Advisory Group. We conducted semi-structured interviews with 34 caregiver clients of the Alzheimer Society across Canada in the Fall of 2022. Interviews were completed by phone or video conference and lasted between 20 and 73 minutes (mean=32 minutes). Participants were all caregivers of a PLWD and ranged in age from 42-89 (mean age= 63 years). There were 10 men, 23 women, and one non-binary person in our sample (caregiver spouse=18, caregiver child=15, caregiver sibling=1). Interviews were recorded and transcribed verbatim. Deductive coding, based on the interview questions, was used to identify themes. Experiences accessing health and social services varied widely among participants based on geographic location, disease progression or symptoms, existing social support and self-advocacy skills, and finances. Many caregivers had trouble accessing the services that they needed and found the system to be difficult to navigate. In many cases, the Alzheimer Society played an important role in making caregivers aware of the health and community services available and provided guidance on how to access those services in a timely way. Some participants, however, found that despite being provided with information and education, they continued to struggle due to a lack of access to quality care in the community (e.g. adult day programs, respite, and long-term care). Some participants experienced such extreme distress at being unable to access the care they needed for the PLWD, that they experienced physical and mental health issues themselves. The Alzheimer Society and similar organizations help to make up for the lack of an integrated care system for PLWD, however, there remain large gaps in the ability of caregivers to access timely, adequate care. Fragmented, disjointed, and difficult to access care can have negative consequences for PLWD and their caregivers, and action is needed to further support the development of integrated dementia care services across Canada.
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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 | 0,004 | 0,011 |
| Méta-épidémiologie (sens strict) | 0,001 | 0,001 |
| Méta-épidémiologie (sens large) | 0,001 | 0,001 |
| Bibliométrie | 0,001 | 0,004 |
| Études des sciences et des technologies | 0,040 | 0,009 |
| Communication savante | 0,010 | 0,005 |
| Science ouverte | 0,003 | 0,009 |
| Intégrité de la recherche | 0,002 | 0,004 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,005 | 0,001 |
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 ».