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Cited by 10Palliative Care and End-of-Life IssuesDementia and Cognitive Impairment ResearchGeriatric Care and Nursing Homes

Care setting transitions for people with dementia: Qualitative perspectives of current and former care partners

Open access
Radcliffe, Kate G., Halim, Madina, Ritchie, Christine S., Maus, Marlon, Harrison, Krista L.·2023·American Journal of Hospice and Palliative Medicine®
DOI 10.1177/10499091231155601PMC PMC10394111
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Abstract

Care partners (CP) of people with dementia (PWD) report that decisions about care setting are aided by the support of healthcare providers. However, providers are often underprepared to offer adequate counseling. This qualitative study aimed to identify what support from providers will assist CPs in making decisions related to care setting throughout the dementia journey. We conducted semi-structured interviews with current CPs of PWD and former CPs of decedents. We utilized the constant comparative method to identify themes regarding preferences around care setting as the PWD progressed from diagnosis to end-of-life. Participants were 31 CPs, including 16 current and 15 former CPs. CPs had a mean age of 67 and were primarily white (n = 23/31), female (n = 21/31), and spouses (n = 24/31). Theme 1: Current CPs discussed overwhelming uncertainty pertaining to care setting, expressing “I don’t know when I need to plan on more care,” and a desire to understand “what stage we are at.” Theme 2: Later in the disease, former CPs wanted guidance from healthcare providers on institutional placement (“I sure would’ve loved some help finding better places”) or support to stay in the home (“a doctor had to come to the house”). CPs want early, specific guidance from healthcare providers related to transitions between home and long-term care. Early in the disease course, counseling geared toward prognosis and expected disease course helps CPs make plans. Later, caregivers want help identifying locations or institutionalization or finding home care resources.

AI snapshot

Written from the paper’s full text.

TL;DR

Current and former care partners of people with dementia wanted earlier, more concrete guidance from healthcare providers about care setting transitions. Current care partners sought prognostic/staging information while still caring at home, whereas former care partners wanted help finding institutional facilities or home-care resources later in the disease.

Key findings

  • Participants were 31 care partners: 16 current and 15 former; mean age 67 (range 40–87), primarily female (21/31, 68%), spouses/partners (24/31, 77%), white (23/31, 74%), college-educated or higher (25/31, 81%), with modal income $100,000 or higher; 5/31 (16%) were LGBT spouses or domestic partners.
  • All current care partners (16/16, 100%) were caring for the person with dementia at home and described overwhelming uncertainty about future care setting, wanting to know disease stage, prognosis, and life expectancy to plan.
  • Among former care partners, 6/15 (40%) cared for the person at home until death, 3/15 (20%) experienced short-term institutionalization, and 6/15 (40%) reported long-term institutionalization; overall, 9/15 (60%) experienced short- or long-term institutionalization.
  • Former care partners wanted provider help finding long-term care facilities or home-care resources; some reported negative or disparaging physician comments as unhelpful, while proactive guidance aided preparation even when the person remained at home.

Methods

  • Secondary qualitative analysis of a parent descriptive qualitative study; semi-structured interviews conducted November 2018–July 2019 with current care partners of community-dwelling people with mild-to-moderate dementia (MMSE or MoCA >15) and former care partners of people who died with severe/advanced dementia less than one year prior.
  • Participants were recruited from a tertiary memory clinic in an urban center; included English-speaking, non-professional/unpaid care partners.
  • Analysis used the constant comparative method with ATLAS.ti; three authors read transcripts, codes were developed deductively around home care and institutionalization and inductively for care-setting journey elements, with diagrams/memos and team review; analysis occurred June–December 2021.

Limitations

  • The paper states the sample may represent other tertiary memory centers but may not transfer to the wider community of people with diagnosed or undiagnosed dementia syndromes; it was homogenous, mostly white, high-income, high-education English-speaking women, and limited to 31 care partners.
  • The paper states that as a secondary analysis, the study had a narrowed scope compared with the parent study, and future work should consider inductive methodology to generate novel theory.
  • Evident from the text: former care partners provided retrospective accounts after the person’s death (interviews on average eight months after death, range 3–12 months), and current care partners were only caring for people with mild-to-moderate dementia, which may limit what the study captures about later-stage experiences.

Model-written summary. Check it against the paper before relying on it.

Integrity signals

Registry

Crossref · 10.1177/10499091231155601

Cites

42 of 42 references verified0 citation errors · 0 not checkable

Statistics

Nothing to recompute.

Claims the paper makes

0 of 20 cited sources checked · 0 supported · 0 flagged

  • Findingown data

    Former care partners who considered institutionalization wanted concrete suggestions about facilities and the timing for institutionalization.

    “CPs wanted this guidance in the form of concrete suggestions about facilities and the timing for institutionalization.”
    Quote in the paperSubstantial claim
  • Findingown data

    Early after diagnosis, current care partners place importance on issues of prognostication, life expectancy, and expected disease course to make plans for their living environment while the person with dementia is living at home.

    “Our work shows that early after diagnosis, current CPs place importance on issues of prognostication, life expectancy, and expected disease course to make plans for their living environment while the PWD is living at home.”
    Quote in the paperSubstantial claim
  • Findingown data

    Early in the disease course, current care partners of people with dementia experience overwhelming uncertainty about future care setting transitions.

    “Theme 1: Current CPs discussed overwhelming uncertainty pertaining to care setting, expressing “I don't know when I need to plan on more care,” and a desire to understand “what stage we are at.””
    • Also stated in: § Themes · plain
      “Early in the disease journey, current CPs experienced overwhelming uncertainty pertaining to future care setting transitions.”
    • Also stated in: § Figure 1: · plain
      “Early in the dementia diagnosis, care partners express uncertainty while caring for the person with dementia at home.”
    Quote in the paperSubstantial claim
  • Findingown data

    Proactive and early guidance from healthcare professionals aided care partners in preparing for a possible transition to long-term care, even if they decided to keep the person with dementia at home.

    “Proactive and early guidance from health care professionals aided CPs in preparing for a possible transition to long-term care, even if they decided to keep the PWD at home.”
    Quote in the paperSubstantial claim
  • Findingown data

    Among former care partners, three (20%) experienced short-term institutionalization.

    “Three former CPs (N=3/15, 20%) experienced short-term institutionalization: they primarily cared for the PWD at home but describe periods in which the patient had short-term stays in non-home settings, such as a rehab hospital, nursing home, or assisted living facility, to later be discharged home.”
    Quote in the paperNot a substantial claim
  • May combine two claims. 12
  • Classified as probably not a substantial claim. 11

  • May combine two claims.

    Findingown data

    Most current care partners did not have a plan to execute their wishes to keep the person with dementia at home and were uncertain about future care.

    “However, despite a desire to keep the PWD in the home, most CPs did not have a plan to execute these wishes and were uncertain about future care.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    Later in the disease course, care partners want help identifying locations for institutionalization or finding home care resources.

    “Later, as uncovered by former CPs, caregivers want help identifying locations or institutionalization or finding home care resources.”
    • Also stated in: § Figure 1: · plain
      “Later, care partners need help to stay at home or decide to move the person with dementia to an institution.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    The study population was homogenous, representing mostly white, high-income and high-education English-speaking women, and limited to 31 care partners.

    “The study population was homogenous, representing mostly white, high-income and high-education English-speaking women, and limited to 31 CPs included.”
    Quote in the paperSubstantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Study design and conductnone given

    As a secondary analysis, this study represented a narrowed scope of study compared to the parent study.

    “As a secondary analysis, this study represented a narrowed scope of study compared to the parent study.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Study design and conductnone given

    KLH reviewed coded data for fidelity to the codebook.

    “KLH reviewed coded data for fidelity to codebook.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Interpretationreasoning

    The study population may be representative of other tertiary memory centers but may not be transferrable to the wider community of people living with diagnosed or undiagnosed dementia syndromes.

    “This study population may be representative of other tertiary memory centers but may not be transferrable to the wider community of people living with diagnosed or undiagnosed dementia syndromes.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Study design and conductcitation

    The study team cycled through multiple iterations of themes related to care setting, looking for unexpected and disconfirming evidence, consistent with the constant comparative method.

    “Consistent with best practices of the constant comparative method, 22,23 the study team cycled through multiple iterations of themes related to care setting, looking for unexpected and disconfirming evidence.”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites [22] source

      Not checked in the free run.

    • cites [23] source

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  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Study design and conductcitation

    The study was approved by the institutional review board and follows COREQ guidance.

    “This study was approved by the institutional review board and follows guidance of the Consolidated Criteria for Reporting Qualitative Studies (COREQ).21”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [21] source

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Study design and conductnone given

    The study team met regularly to ensure code accuracy and review emergent findings.

    “The study team met regularly to ensure code accuracy and review emergent findings.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    Clinicians may worry that providing people with dementia and care partners with information about dementia diagnosis and management may lead to psychological distress or erode hope.

    “Clinicians may worry about that providing PWD and CPs with information about dementia diagnosis and management may lead to psychological distress or erode hope.36,37”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites [36] source

      Not checked in the free run.

    • cites [37] source

      Not checked in the free run.

  • May combine two claims.

    Premisecitation

    Healthcare providers face limitations in their ability to counsel care partners and people with dementia because of insufficient time in appointments, insufficient reimbursement, and lack of expertise in dementia care.

    “Healthcare providers face limitations in their ability to counsel CPs and PWD because of insufficient time in appointments, insufficient reimbursement, and lack of expertise in dementia care.[29][30][31][32]”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [29][30][31][32]

      Not checked in the free run.

  • May combine two claims.

    Premisecitation

    Even dementia experts identify challenges in communicating about difficult topics, including diagnostic disclosure and prognosis, and worry about disrupting their relationship with the patient and caregivers.

    “Even dementia experts identify challenges in communicating about difficult topics, including diagnostic disclosure and prognosis, [33][34][35] and worry about disrupting their relationship with the patient and caregivers.18”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites [33][34][35]

      Not checked in the free run.

    • cites [18] source

      Not checked in the free run.

  • Classified as probably not a substantial claim.

    Premisecitation

    In one study, family physicians reported feeling underprepared to counsel patients and their care partners on decision-making related to home or institutional care.

    “In one study, family physicians reported feeling underprepared to counsel patients and their CPs on decision-making related to home or institutional care.17”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites [17]

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Interpretationreasoning

    The scope of the study was limited.

    “As such, the scope of the study was limited.”
    Quote in the paperNot a substantial claim

  • Classified as probably not a substantial claim. May combine two claims.

    Premisecitation

    Physicians at a memory care clinic endorsed that patients and family often have questions about care setting decisions, yet no protocols exist to help physicians anticipate and address these concerns.

    “Physicians at a memory care clinic similarly endorsed that patients and family often have questions about care setting decisions, 18 yet no protocols exist to help physicians anticipate and address these concerns.”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites [18] source

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S2 (checkable).

    Interpretationreasoning

    Care partners from different backgrounds and contexts likely require distinct supports from providers that meet their care transition needs in a culturally humble manner.

    “CPs from different backgrounds and contexts likely require distinct supports from providers that meet their care transition needs in a culturally humble manner.”
    Quote in the paperNot a substantial claim

  • Classified as probably not a substantial claim.

    Interpretationreasoning

    The findings from this study illustrate the need for provider guidance throughout the disease course, particularly as the person with dementia approaches end of life.

    “The findings from this study illustrate the need for provider guidance throughout the disease course, particularly as the person with dementia approaches end of life.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Premisecitation

    Negative interactions with providers can increase dissatisfaction and burden, and decrease self-efficacy during transitions.

    “Negative interactions with providers, on the other hand, can increase dissatisfaction and burden, and decrease self-efficacy during transitions.16”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [16] source

      Not checked in the free run.

  • May combine two claims.

    Interpretationreasoning

    Guidance is crucial to a care partner's ability to make plans and they want to hear it from trusted sources including physicians.

    “Yet, guidance is crucial to a CP's ability to make plans and they want to hear it from trusted sources including physicians.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Premisecitation

    Research has established that care partners want support from healthcare providers in transitions from home to long-term care, but not how desired guidance may change as the person with dementia progresses from early diagnosis to end-of-life.

    “Research has established that CPs want support from healthcare providers in transitions from home to long-term care, [10][11][12]24 but not how desired guidance may change as the PWD progresses from early diagnosis to end-of-life.”
    Quote in the paperSubstantial claim0 of 2 sources checked
    • cites [10][11][12]

      Not checked in the free run.

    • cites [24] source

      Not checked in the free run.

20 of 20

  • The paper relies on this without support.

    Care partners' reports of desired guidance can identify what guidance from healthcare providers will benefit care partners navigating care setting decisions.

    “The first step in establishing recommendations for healthcare providers who wish to counsel PWD and CPs on care setting is to identify what guidance is useful.”

  • The paper relies on this without support.

    Provider guidance can improve care partners' sense of uncertainty and their ability to navigate institutionalization or care at home.

    “Providers should supply timely, concrete guidance related to care setting to improve CPs' sense of uncertainty and their ability to navigate institutionalization or care at home.”
2 of 2

Claims other papers make about this one

Each is checked against this paper’s own text: does it say what the citing paper says it does?

  • Many caregivers remained unaware of ACP processes, leaving them unprepared and distressed during critical care transition decisions.

    “Despite the terminal trajectory of dementia, palliative care consultations were infrequent, and many caregivers remained unaware of ACP processes, leaving them unprepared and distressed during critical care transition decisions (Mogan et al., 2022; Radcliffe et al., 2023; Saragosa et al., 2023; Sharda et al., 2020).”

    From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Radcliffe et al., 2023

    The Themes and Discussion sections report that care partners often lacked a plan for future care and wanted earlier guidance about care-setting transitions (page not provided). The paper does not establish that many were unaware of ACP processes or that this lack of awareness caused distress; it also does not report how often palliative care consultations occurred. (LLM, conf=0.82)

    Experimental — accuracy not yet measured

  • Palliative care consultations were infrequent despite the terminal trajectory of dementia.

    “Despite the terminal trajectory of dementia, palliative care consultations were infrequent, and many caregivers remained unaware of ACP processes, leaving them unprepared and distressed during critical care transition decisions (Mogan et al., 2022; Radcliffe et al., 2023; Saragosa et al., 2023; Sharda et al., 2020).”

    From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Radcliffe et al., 2023

    The Discussion (page unavailable) describes dementia care through end of life and reports suboptimal guidance about prognosis and planning. It does not report how often palliative care consultations occurred, so the claim that they were infrequent is unsupported by this paper. (LLM, conf=0.82)

    Experimental — accuracy not yet measured

  • These challenges were particularly evident during discharge, prognostic discussions, and the management of neuropsychiatric symptoms.

    “These challenges were particularly evident during discharge, prognostic discussions, and the management of neuropsychiatric symptoms (Parker et al., 2021; Prusaczyk et al., 2020; Radcliffe et al., 2023; Sawan et al., 2021).”

    From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Radcliffe et al., 2023

    The Discussion (page unavailable in our copy) reports that care partners wanted guidance about prognosis and transitions between home and long-term care. The Introduction mentions hospital-to-home transitions and behavioral symptoms, but the paper does not establish that challenges were particularly evident during discharge or in managing neuropsychiatric symptoms. (LLM, conf=0.85)

    Experimental — accuracy not yet measured

  • Support from care placement consultants and purpose-built memory support units facilitated better outcomes.

    “Support from care placement consultants and purpose-built memory support units facilitated better outcomes (Broadbent & Gilbert, 2020; Radcliffe et al., 2023).”

    From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Radcliffe et al., 2023

    Theme 2 reports that care partners wanted help finding facilities and that early guidance from healthcare professionals helped them prepare for a possible transition to long-term care. The paper does not report support from care placement consultants or show that purpose-built memory support units produced better outcomes. (LLM, conf=0.85)

    Experimental — accuracy not yet measured

Cites

Flagged first, then by citations

Research works printed but not linked: 1

  1. Yaffe MJ, 2008, Can Fam Physician, 54, 1008

Cited by

Sorted by citations

Related

Authors
Radcliffe, K. G., Halim, M., Ritchie, C. S., Maus, M., & Harrison, K. L.
Affiliations
  • University of California, San Francisco (US)
  • Harvard University (US)
  • University of California, Berkeley (US)
Corresponding author
Radcliffe, Kate G.
ORCID
Venue
American Journal of Hospice and Palliative Medicine®
Publisher
SAGE Publications
Published
2023-02-02
Volume
40
Issue
12
Pages
1310-1316
ISSN
  • 1049-9091 (ISSN-L)
  • 1938-2715
DOI
10.1177/10499091231155601
PMC
PMC10394111
OpenAlex
W4318952076
Semantic Scholar
5af38f4f6c4d677334243f0b3d09ad6c7ce809b9
Cited by
10
References
42
Citations by year
2026: 3 · 2025: 3 · 2024: 1 · 2023: 2
FWCI
2.30
Type
journal article
Language
en
Open access
Licence
journals.sagepub.com/page/policies/text-and-data-mining-license (tdm)
Locations
  • American Journal of Hospice and Palliative Medicine® (publishedVersion)
  • PubMed (publishedVersion)
  • PubMed Central (acceptedVersion)
  • eScholarship (California Digital Library) (submittedVersion)
Funders
  • Global Brain Health Institute
  • Medical Student Training in Aging Research Program (T35AG026736)
  • National Palliative Care Research Center (Junior Faculty Award)
  • UCSF Hellman Fellows Award
  • National Center for Advancing Translational Sciences (KL2TR001870)
  • National Institute on Aging (K01AG059831)
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
  • Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
  • Health Sciences › Health Professions › General Health Professions › Geriatric Care and Nursing Homes
Keywords
dementia, care partners, health professional counseling, institutionalization, long-term care, home care, end-of-life care, caregiver decision-making, prognosis communication
MeSH terms
Aged, Decision Making, Dementia, Female, Health Personnel, Home Care Services, Humans, Caregivers, Qualitative Research

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