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Caregiving for Adults with Down Syndrome: Caregiver Experiences and Support Needs

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Title: Caregiving for Adults with Down Syndrome: Caregiver Experiences and Support Needs
Language: English
Authors: Amy E. Bodde (ORCID 0000-0002-8143-8105), Joanna Veazey Brooks, Bethany Forseth, Tara Wolfe, Kristine Williams, Lauren T. Ptomey
Source: Journal of Applied Research in Intellectual Disabilities. 2025 38(5).
Availability: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Peer Reviewed: Y
Page Count: 11
Publication Date: 2025
Sponsoring Agency: National Institute on Aging (NIA) (DHHS/NIH)
National Center for Advancing Translational Sciences (NCATS) (DHHS/NIH)
Contract Number: AG063909
KL2TR002367
Document Type: Journal Articles
Reports - Research
Descriptors: Adults, Down Syndrome, Caregivers, Experience, Needs, Long Range Planning, Social Support Groups, Psychological Patterns
DOI: 10.1111/jar.70118
ISSN: 1360-2322
1468-3148
Abstract: Background: Family caregivers of adults with Down syndrome often provide life-long caregiving support for their loved one. Long-term caregiving can impact caregivers' health and well-being, yet their experiences and support needs are underexplored. Method: Semi-structured interviews were conducted with caregivers of adults with Down syndrome to understand their caregiving experiences and perceived caregiver support needs. Transcripts of the recorded interviews were coded and analysed thematically. Results: Seventeen family caregivers (94.1% female, M[subscript age] = 58.8 years) of adults with Down syndrome completed the interviews. We identified four major themes: constancy of caregiving, future planning, significance of social supports and positive joys and rhythms. Conclusion: Our findings demonstrate that caregiving responsibilities can feel constant and unceasing, yet consistent routines and positive appraisal help ease the burden. Family and friends support thriving, but trusted options for transportation services, life transition planning and respite care are needed. Targeting these support needs may improve caregiver well-being.
Abstractor: As Provided
Entry Date: 2025
Accession Number: EJ1487683
Database: ERIC
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  Data: Caregiving for Adults with Down Syndrome: Caregiver Experiences and Support Needs
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  Data: <searchLink fieldCode="AR" term="%22Amy+E%2E+Bodde%22">Amy E. Bodde</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-8143-8105">0000-0002-8143-8105</externalLink>)<br /><searchLink fieldCode="AR" term="%22Joanna+Veazey+Brooks%22">Joanna Veazey Brooks</searchLink><br /><searchLink fieldCode="AR" term="%22Bethany+Forseth%22">Bethany Forseth</searchLink><br /><searchLink fieldCode="AR" term="%22Tara+Wolfe%22">Tara Wolfe</searchLink><br /><searchLink fieldCode="AR" term="%22Kristine+Williams%22">Kristine Williams</searchLink><br /><searchLink fieldCode="AR" term="%22Lauren+T%2E+Ptomey%22">Lauren T. Ptomey</searchLink>
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  Data: <searchLink fieldCode="SO" term="%22Journal+of+Applied+Research+in+Intellectual+Disabilities%22"><i>Journal of Applied Research in Intellectual Disabilities</i></searchLink>. 2025 38(5).
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  Data: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
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  Data: Y
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  Data: 11
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  Data: 2025
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  Data: National Institute on Aging (NIA) (DHHS/NIH)<br />National Center for Advancing Translational Sciences (NCATS) (DHHS/NIH)
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  Data: Journal Articles<br />Reports - Research
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  Data: <searchLink fieldCode="DE" term="%22Adults%22">Adults</searchLink><br /><searchLink fieldCode="DE" term="%22Down+Syndrome%22">Down Syndrome</searchLink><br /><searchLink fieldCode="DE" term="%22Caregivers%22">Caregivers</searchLink><br /><searchLink fieldCode="DE" term="%22Experience%22">Experience</searchLink><br /><searchLink fieldCode="DE" term="%22Needs%22">Needs</searchLink><br /><searchLink fieldCode="DE" term="%22Long+Range+Planning%22">Long Range Planning</searchLink><br /><searchLink fieldCode="DE" term="%22Social+Support+Groups%22">Social Support Groups</searchLink><br /><searchLink fieldCode="DE" term="%22Psychological+Patterns%22">Psychological Patterns</searchLink>
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  Data: 10.1111/jar.70118
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  Data: 1360-2322<br />1468-3148
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Background: Family caregivers of adults with Down syndrome often provide life-long caregiving support for their loved one. Long-term caregiving can impact caregivers' health and well-being, yet their experiences and support needs are underexplored. Method: Semi-structured interviews were conducted with caregivers of adults with Down syndrome to understand their caregiving experiences and perceived caregiver support needs. Transcripts of the recorded interviews were coded and analysed thematically. Results: Seventeen family caregivers (94.1% female, M[subscript age] = 58.8 years) of adults with Down syndrome completed the interviews. We identified four major themes: constancy of caregiving, future planning, significance of social supports and positive joys and rhythms. Conclusion: Our findings demonstrate that caregiving responsibilities can feel constant and unceasing, yet consistent routines and positive appraisal help ease the burden. Family and friends support thriving, but trusted options for transportation services, life transition planning and respite care are needed. Targeting these support needs may improve caregiver well-being.
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        Value: 10.1111/jar.70118
    Languages:
      – Text: English
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      Pagination:
        PageCount: 11
    Subjects:
      – SubjectFull: Adults
        Type: general
      – SubjectFull: Down Syndrome
        Type: general
      – SubjectFull: Caregivers
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      – SubjectFull: Experience
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      – SubjectFull: Needs
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      – SubjectFull: Long Range Planning
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      – SubjectFull: Social Support Groups
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      – SubjectFull: Psychological Patterns
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      – TitleFull: Caregiving for Adults with Down Syndrome: Caregiver Experiences and Support Needs
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