ArticleJournal of Alzheimer's disease : JAD2022
"Captive by the Uncertainty"-Experiences with Anticipatory Guidance for People Living with Dementia and Their Caregivers at a Specialty Dementia Clinic.
Article in Journal of Alzheimer's disease : JAD, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 25 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
25 citing papers in PubMed, 1 synthesis or guideline pooled it, 36 citations in OpenAlex.
- Summary of best evidence for non-pharmacological management of sleep disturbances in patients with mild cognitive impairment or early dementia: an integrative review.Frontiers in medicine · 2026Pooled it
- The Effect of the Care Ecosystem Collaborative Care Model on End-of-Life Outcomes for People With Dementia and Their Caregivers.The American journal of hospice & palliative care · 2026Trial
- A Qualitative Study to Characterize the Experiences of Patients and Caregivers With Dementia Diagnostic Disclosure Communication and Care Planning.Journal of geriatric psychiatry and neurology · 2026Article
- A program of SUPPORT-DPalliative & supportive care · 2026Article
- Patient- and Caregiver-Identified Goals for Advance Care Planning in Patients With Dementia or Cognitive Impairment.Dementia (London, England) · 2026Article
- "It may cost you your money, it costs you your life": a framework for financial hardship in dementia.The Gerontologist · 2025Article
- Care Decisions in the Hospital: Challenges for Family Members of Hospitalized Persons With Dementia.Journal of pain and symptom management · 2025Article
- A qualitative study of people with Alzheimer's disease in a memory clinic considering lecanemab treatment.Journal of Alzheimer's disease : JAD · 2025Article
- "By the Time We Knew …": Poetic Analysis of End-of-Life Caregiving Experiences for Rapidly Progressive and Slower-Duration Dementia Syndromes.Journal of the American Geriatrics Society · 2025Article
- "Nobody Can Be Equipped for This": Advice From New Residents of Long-Term Care Facilities.Journal of the American Geriatrics Society · 2025Article
- Improving Early Dementia Detection Among Diverse Older Adults With Cognitive Concerns With the 5-Cog Paradigm: Protocol for a Hybrid Effectiveness-Implementation Clinical Trial.JMIR research protocols · 2025Article
- The significance of a dementia diagnosis from the perspective of the family caregivers: a qualitative study.BMC health services research · 2025Article
- Dementia Specialty Care Clinicians' Perspectives on Their Role in the Dementia Diagnostic Process and Diagnostic Disclosure.Journal of geriatric psychiatry and neurology · 2025Article
- Exploring confidence in financial planning topics among care partners of persons living with dementia.Dementia (London, England) · 2024Article
- "Relationships, Very Quickly, Turn to Nothing": Loneliness, Social Isolation, and Adaptation to Changing Social Lives Among Persons Living With Dementia and Care Partners.The Gerontologist · 2024Article
- Dementia Ideal Care: Ecosystem Map of Best Practices and Care Pathways Enhanced by Technology and Community.Journal of Alzheimer's disease : JAD · 2024Article
- Care Setting Transitions for People With Dementia: Qualitative Perspectives of Current and Former Care Partners.The American journal of hospice & palliative care · 2023Article
- Use of the patient portal among older adults with diagnosed dementia and their care partners.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2023Observational
- The needs of family caregivers of persons living with dementia cared for in primary care practices.Journal of evaluation in clinical practice · 2023Article
- Caregiver Experiences Navigating the Diagnostic Journey in a Rapidly Progressing Dementia.Journal of geriatric psychiatry and neurology · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
9 authors at 3 institutions in 2 countries.
Funding
Abstract
backgroundAfter 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.
objectiveTo examine PWD and caregiver perspectives on receiving anticipatory guidance from a specialty dementia clinic.
methodsWe 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.
resultsOf 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.
conclusionPWD 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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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.