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

Irina Kinchin* (Lead Author), Layla Edwards, Emily Adrion, Yaohua Chen, Aya Ashour, Iracema Leroi, Anna Brugulat-Serrat, Jane Phillips, Fiona Masterson, Slavica Kochovska

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract / Description of output


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.
Original languageEnglish
JournalInternational Journal of Geriatric Psychiatry
Volume37
Issue number7
Early online date24 May 2022
DOIs
Publication statusPublished - 6 Jun 2022

Keywords / Materials (for Non-textual outputs)

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

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