Impact of diagnosed (vs undiagnosed) dementia on family caregiving experiences
Open accessAbstract
Background: Most older adults with Alzheimer's disease and related dementias (ADRD) do not receive a timely formal diagnosis, although formal diagnosis is linked to improved outcomes. Little is known about how a recognized formal diagnosis impacts family caregivers, who provide crucial support for older adults experiencing ADRD. Methods: We analyzed 2017 National Health and Aging Trends Study and linked National Study of Caregiving data for a nationally representative sample of 724 (weighted n = 5,431,551) caregivers who assisted an older adult with probable dementia. Probable dementia was determined via previously validated composite measure. We modeled caregiver experiences as a function of recognized formal ADRD diagnosis using weighted, logistic regression and adjusting for the relevant older adult and caregiver characteristics. Results: Among caregivers who assisted an older adult with probable dementia, those assisting an individual with recognized formal ADRD diagnosis were significantly more likely to report emotional difficulty (aOR: 1.77; p = 0.03) and family disagreement over the older adult's care (aOR: 5.53; p = 0.03). They were also more likely to assist with communication during doctors' visits (aOR: 9.71; p < 0.001) and to receive caregiving‐related training (aOR: 2.59; p = 0.01). Conclusions: While a timely ADRD diagnosis may help ensure access to needed supports for older adult and caregiver alike, diagnosis must be linked to support as they navigate resultant complex emotions. Formal diagnosis is linked to caregiver integration with, and support from, the older adult's team of health care providers; therefore, reducing existing disparities in timely diagnosis is necessary to ensure all caregivers have equal access to support.
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Caregivers who helped someone with a formal diagnosis of dementia indicated more emotional difficulty and family disagreement than caregivers of individuals without a formal diagnosis.
“Caregivers who helped someone with a formal diagnosis of dementia indicated more emotional difficulty and family disagreement than caregivers of individuals without a formal diagnosis.”
From 2024 Alzheimer's disease facts and figures (2024) · cites this paper as [544]
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Research works printed but not linked: 1
- [8]National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Health Care Services; Board on Health Sciences Policy; Committee on Care Interventions for Individuals with Dementia and Their Caregivers, Stroud C, Larson EB, eds. Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward. Washington (DC): National Academies Press (US); February 23, 2021. 33625814
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(2024) · Alzheimer's & Dementia · doi:10.1002/alz.13809 · Cited by 2,536 · see citing works
- Authors
- Burgdorf, J. G., & Amjad, H.
- Affiliations
- VNS Health (US)
- Johns Hopkins University (US)
- Corresponding author
- Burgdorf, Julia G.
- Venue
- Journal of the American Geriatrics Society
- Publisher
- Wiley
- Published
- 2022-11-25
- Volume
- 71
- Issue
- 4
- Pages
- 1236-1242
- ISSN
- 0002-8614 (ISSN-L)
- 1532-5415
- PMC
- PMC10089946
- OpenAlex
- W4310054756
- Cited by
- 24
- References
- 27
- Citations by year
- 2026: 7 · 2025: 11 · 2024: 5 · 2023: 1
- FWCI
- 2.77
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Journal of the American Geriatrics Society (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Institute on Aging (K23 AG064036, R03 AG063237)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Keywords
- dementia diagnosis, Alzheimer's disease and related dementias, family caregivers, caregiver experiences, emotional burden, caregiver education, communication with health care providers, timely diagnosis, older adults, caregiver support
- MeSH terms
- Psychosocial Support Systems, White, Aged, 80 and over, Alzheimer Disease, Dementia, Family, Family Health, Female, Humans, Male, Middle Aged, Patient Care Team, Stress, Psychological, Reproducibility of Results, Logistic Models, Treatment Outcome, Caregivers, Delayed Diagnosis
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