Evidence map›Paper›PMID 41803698›Full record

ArticleBMC geriatrics2026

Understanding the family caregivers' needs in late-stage dementia: a qualitative perspective to inform policy action.

Silvia Gonella, Paola Di Giulio, Jacopo Maria Olagnero, Daniele Quaranta, Giulia Nagliati, Valerio Dimonte, Sara Campagna

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In one paragraph

Article in BMC geriatrics, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

7 authors.

Silvia GonellaDepartment of Public Health and Pediatrics, University of Torino, Santena street 5 bis, Turin, 10126, Italy. silvia.gonella@unito.it.
Paola Di GiulioDepartment of Public Health and Pediatrics, University of Torino, Santena street 5 bis, Turin, 10126, Italy.
Jacopo Maria OlagneroDepartment of Public Health and Pediatrics, University of Torino, Santena street 5 bis, Turin, 10126, Italy.
Daniele QuarantaDepartment of Public Health and Pediatrics, University of Torino, Santena street 5 bis, Turin, 10126, Italy.
Giulia NagliatiDepartment of Public Health and Pediatrics, University of Torino, Santena street 5 bis, Turin, 10126, Italy.
Valerio DimonteDepartment of Public Health and Pediatrics, University of Torino, Santena street 5 bis, Turin, 10126, Italy.
Sara CampagnaDepartment of Public Health and Pediatrics, University of Torino, Santena street 5 bis, Turin, 10126, Italy.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundDementia places substantial burden on family caregivers due to its irreversible and progressive nature. Prior research mainly explored family caregivers’ needs in the early- and middle-stage of dementia. However, as dementia progresses, caregiving demands intensify and caregivers’ needs evolve, often contributing to nursing home (NH) admission. Assessing needs across the disease trajectory is essential for designing tailored interventions. This study aimed to explore family caregivers’ self-perceived needs in late-stage dementia, primarily in the NH context and during the transition into NH.

methodsA qualitative descriptive study was performed. Data were collected via semi-structured in-depth interviews with open-ended questions and then analyzed with inductive content analyses. Thirteen family caregivers of people with advanced dementia were interviewed. They were purposively identified by the NH managers (n = 11) and the local palliative care service (n = 2).

resultsFamily caregivers had information, psychosocial, and self-care needs that were deeply intertwined and frequently coexisted at the same time. Information needs concerned clinical issues including disease trajectory and treatment options, legal issues such as the role of family caregivers in the decision making-process, bureaucratic issues including State assistance and benefits, and information on the available services in the community. They looked for formal care providers’ support to satisfy their information and psychosocial needs, while they relied on informal support for obtaining emotional support, releasing stress, and managing daily care duties.

conclusionsOur study findings confirm that NH placement does not completely relieve caregiving burden and highlight the recurrence of well-known needs that can be targeted through interventions aimed at promoting dementia understanding and services knowledge, or ensuring psychosocial or material support in daily care. In all, these findings call for moving from needs assessment to actionable interventions. A mapping of the resources available in the community can be the starting point for facilitating networking to answer timely and effectively to dementia family caregivers’ care needs, and appears as a useful aid to inform public health planning and resource allocation.

Indexed as

CaregiversDementiaNeeds AssessmentQualitative ResearchAgedAged, 80 and overFemaleHumansMaleMiddle AgedNursing HomesCaregiver burdenCaregiversDementiaNeeds assessmentPublic policyQualitative research

Identifiers

PMID41803698
PMCPMC13085392

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.