“Captive by the Uncertainty”—Experiences with Anticipatory Guidance for People Living with Dementia and Their Caregivers at a Specialty Dementia Clinic
Open accessAbstract
Background: After a diagnosis of Alzheimer’s disease and related disorders, people living with dementia (PWD) and caregivers wonder what disease trajectory to expect and how to plan for functional and cognitive decline. This qualitative study aimed to identify patient and caregiver experiences receiving anticipatory guidance about dementia from a specialty dementia clinic. Objective: To examine PWD and caregiver perspectives on receiving anticipatory guidance from a specialty dementia clinic. Methods: We conducted semi-structured interviews with PWD, and active and bereaved family caregivers, recruited from a specialty dementia clinic. Interviews were recorded, transcribed, and systematically summarized. Thematic analysis identified anticipatory guidance received from clinical or non-clinical sources and areas where respondents wanted additional guidance. Results: Of 40 participants, 9 were PWD, 16 were active caregivers, and 15 were bereaved caregivers. PWD had a mean age of 75 and were primarily male ( n = 6/9); caregivers had a mean age of 67 and were primarily female ( n = 21/31). Participants felt they received incomplete or “hesitant” guidance on prognosis and expected disease course via their clinicians and filled the gap with information they found via the internet, books, and support groups. They appreciated guidance on behavioral, safety, and communication issues from clinicians, but found more timely and advance guidance from other non-clinical sources. Guidance on legal and financial planning was primarily identified through non-clinical sources. Conclusion: PWD and caregivers want more information about expected disease course, prognosis, and help planning after diagnosis. Clinicians have an opportunity to improve anticipatory guidance communication and subsequent care provision.
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Research has shown that care partners caring for people with dementia want more anticipatory guidance from clinicians related to institutionalization decisions, specific transitions, and dementia disease course.
“Research has shown that CPs caring for PWD want more anticipatory guidance from clinicians related to institutionalization decisions, [10][11][12][13] specific transitions (e.g.hospital to home), 14 and dementia disease course.15”
From Care setting transitions for people with dementia: Qualitative perspectives of current and former care partners (2023) · cites this paper as [15]
Limited research has demonstrated that people with dementia and care partners receive suboptimal anticipatory guidance related to prognosis and planning.
“Limited research has demonstrated that PWD and CPs receive suboptimal anticipatory guidance related to prognosis and planning.15,20”
From Care setting transitions for people with dementia: Qualitative perspectives of current and former care partners (2023) · cites this paper as [15]
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Mansfield, E. L., Zucca, A. C., Meyer, C., Bryant, J., & Waller, A. E. (2025) · Aging and Health Research · doi:10.1016/j.ahr.2025.100263
Rebolo, M., Marôco, J. P., Melo, G., & de Mendonça, A. (2026) · Journal of Geriatric Psychiatry and Neurology · doi:10.1177/08919887261439756
A communication phenotype for varying information needs among caregivers of persons with dementia
Alpert, J. M., Rothberg, M. B., Paasche‐Orlow, M. K., Hashmi, A. Z., Perez-Protto, S. E., Fox, J., Criswell, V., & Wittenberg-Lyles, E. M. (2026) · The Gerontologist · doi:10.1093/geront/gnag091
Lived experience as guidance: A qualitative study of parental advice for craniosynostosis
Silvestri, T. P., Osborn, A. J., & Roberts, R. (2026) · Journal of Child Health Care · doi:10.1177/13674935261476741
Xie, Q., Shi, J., Guo, Y.-N., Hu, M.-Y., Chen, X., Chen, Y.-S., Dong, Y.-H., Wei, Z.-H., & Feng, H. (2026) · Frontiers in Medicine · doi:10.3389/fmed.2026.1913461
A group hypnosis intervention for caregivers confronted with dementia: Results of a pilot study
Wawrziczny, É., Traversac, E., & Picard, S. (2026) · Journal of Alzheimer s Disease · doi:10.1177/13872877261487380
- Authors
- Shafir, A., Ritchie, C. S., Garrett, S. B., Bernstein Sideman, A., Naasan, G., Merrilees, J., Widera, E., Flint, L., & Harrison, K. L.
- Affiliations
- University of California
- Harvard University (US)
- University of California System (US)
- San Francisco VA Medical Center (US)
- Venue
- Journal of Alzheimer’s Disease
- Publisher
- SAGE Publications
- Published
- 2022-02-02
- Volume
- 86
- Issue
- 2
- Pages
- 787-800
- ISSN
- 1387-2877 (ISSN-L)
- 1875-8908
- PMC
- PMC9717709
- OpenAlex
- W4210832857
- Cited by
- 45
- References
- 43
- Citations by year
- 2026: 6 · 2025: 16 · 2024: 9 · 2023: 8 · 2022: 6
- FWCI
- 6.35
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Journal of Alzheimer s Disease (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- eScholarship (California Digital Library) (submittedVersion)
- Funders
- National Institutes of Health (KL2TR001870)
- Agency for Healthcare Research and Quality (T32HS022241)
- National Institute on Aging (L30 AG060590, K01AG059831, K01AG059840)
- National Center for Advancing Translational Sciences
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
- Keywords
- anticipatory guidance, dementia
- MeSH terms
- Aged, Alzheimer Disease, Dementia, Female, Humans, Male, Caregivers, Uncertainty, Qualitative Research
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
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