ArticleJournal of Alzheimer's disease : JAD2022
"I Didn't Sign Up for This": Perspectives from Persons Living with Dementia and Care Partners on Challenges, Supports, and Opportunities to Add Geriatric Neuropalliative Care to Dementia Specialty Care.
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 15 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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
15 citing papers in PubMed, 1 synthesis or guideline pooled it, 20 citations in OpenAlex.
- Palliative Care in Early Dementia.Journal of pain and symptom management · 2024Pooled 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
- Understanding how social context shapes decisions to seek institutional care: a qualitative study of experiences of progressive cognitive decline among Latinx families.The Gerontologist · 2025Article
- Culturally sensitive CLEAR guidelines on disclosing and communicating a diagnosis of dementia.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Article
- "It may cost you your money, it costs you your life": a framework for financial hardship in dementia.The Gerontologist · 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
- "I'm his brain": A qualitative study of care partners supporting the inner strength of persons living with mild cognitive impairment.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Article
- "International journal of environmental research and public health · 2025Article
- "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
- Bio-Experiential Technology to Support Persons With Dementia and Care Partners at Home (TEND): Protocol for an Intervention Development Study.JMIR research protocols · 2023Article
- Care Setting Transitions for People With Dementia: Qualitative Perspectives of Current and Former Care Partners.The American journal of hospice & palliative care · 2023Article
- Toward Gerineuropalliative Care for Patients with Dementia.The New England journal of medicine · 2023Article
- Functional and clinical needs of older hospice enrollees with coexisting dementia.Journal of the American Geriatrics Society · 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
10 authors at 5 institutions in 1 country.
Funding
Abstract
backgroundIn the United States, dementia specialty centers affiliated with centers of excellence for research hold promise as locations to develop innovative, holistic care in care systems otherwise siloed by discipline or payer.
objectiveWe conducted foundational research to inform development of patient-and family-centered palliative care interventions for dementia specialty centers.
methodsWe interviewed persons living with dementia (PLWD), current, and former care partners (CP) recruited from a specialty dementia clinic and purposively selected for variation across disease syndrome and stage. A framework method of thematic analysis included coding, analytic matrices, and pattern mapping.
results40 participants included 9 PLWD, 16 current CPs, and 15 former CPs of decedents; 48% impacted by Alzheimer's disease dementia. While help from family, support groups and adult day centers, paid caregiving, and sensitive clinical care were invaluable to PLWD, CPs, or both, these supports were insufficient to navigate the extensive challenges. Disease-oriented sources of distress included symptoms, functional impairment and falls, uncertainty and loss, and inaccessible care. Social and relational challenges included constrained personal and professional opportunities. The obligation and toll of giving or receiving caregiving were challenging. Clinical care challenges for PLWD and/or CPs included care fragmentation, insufficient guidance to inform planning and need for expert interdisciplinary clinical care at home.
conclusionFindings highlight the breadth and gravity of gaps, which surpass the disciplinary focus of either behavioral neurology or palliative care alone. Results can inform the development of novel interventions to add principles of geriatrics and neuropalliative care to dementia care.
Indexed as
Identifiers
What OpenQuestion holds
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.