Title :

Care partner needs of people with neurodegenerative disorders: What are the needs, and how well do the current assessment tools capture these needs? A systematic meta-review.

Author(s) :

Kinchin, Irina [Auteur]
Trinity College Dublin
Edwards, Layla [Auteur]
University of Technology Sydney [UTS]
Adrion, E. [Auteur]
Trinity College Dublin
Chen, Yaohua [Auteur]
Troubles cognitifs dégénératifs et vasculaires - U1171
Ashour, Aya [Auteur]
University of Dublin
Leroi, Iracema [Auteur]
Trinity College Dublin
Brugulat-Serrat, Anna [Auteur]
Trinity College Dublin
Phillips, Jane [Auteur]
University of Technology Sydney [UTS]
Masterson, Fiona [Auteur]
Kochovska, Slavica [Auteur]
University of Wollongong [Australia]

Journal title :

International Journal of Geriatric Psychiatry

Abbreviated title :

Int J Geriatr Psychiatry

Volume number :

37

Publication date :

2024-03-27

ISSN :

1099-1166

English keyword(s) :

Alzheimer's
assessment tool
care partners
caregivers
carers
cognitive impairment
dementia
descriptive system
economic evaluation
instrument
meta-review
needs assessment
neurodegenerative disorders
systematic review

HAL domain(s) :

Sciences du Vivant [q-bio]

English abstract : [en]

Objectives: The burden on care partners, particularly once dementia emerges, is among the greatest of all caregiving groups. This meta-review aimed to (1) synthesis evidence on the self-reported needs of care partners ...
Show more >Objectives: The burden on care partners, particularly once dementia emerges, is among the greatest of all caregiving groups. This meta-review aimed to (1) synthesis evidence on the self-reported needs of care partners supporting people living with neurodegenerative disorders; (2) compare the needs according to care partner and care recipient characteristics; and (3) determine the face validity of existing care partner needs assessment tools. Methods: We conducted a systematic review of reviews involving a thematic synthesis of care partner needs and differences in needs according to demographic and other characteristics. We then conducted a gap analysis by identifying the themes of needs from existing needs assessment tools specific to dementia and cross-matching them with the needs derived from the thematic synthesis. Results: Drawing on 17 published reviews, the identified range of needs fell into four key themes: (1) knowledge and information, (2) physical, social and emotional support, (3) care partner self-care, and (4) care recipient needs. Needs may differ according to disease trajectory, relationship to the care recipient, and the demographic characteristics of the care partner and recipient. The 'captured needs' range between 8% and 66% across all the included needs assessment tools. Conclusions: Current tools do not fully or adequately capture the self-identified needs of care partners of people living with neurodegenerative disorders. Given the high burden on care partners, which has been further exacerbated by the COVID-19 (SARS CoV-2) pandemic, the needs assessment tools should align with the self-reported needs of care partners throughout the caregiving trajectory to better understand unmet needs and target supportive interventions.Show less >

Language :

Anglais

Peer reviewed article :

Oui

Audience :

Internationale

Popular science :

Non

Administrative institution(s) :

Université de Lille
Inserm
CHU Lille

Collections :

• Lille Neurosciences & Cognition (LilNCog) - U 1172

Research team(s) :

Troubles cognitifs dégénératifs et vasculaires

Submission date :

2024-05-06T22:56:25Z
2025-03-06T09:09:22Z