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Cited by 10Geriatric Care and Nursing HomesDementia and Cognitive Impairment ResearchNursing care and research

Towards defining quality in home care for persons living with dementia

Open access
Saragosa, Marianne, Jeffs, Lianne, Okrainec, Karen, Kuluski, Kerry·2022·PLOS ONE
DOI 10.1371/journal.pone.0274269PMC PMC9469964
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Abstract

Introduction: Accelerating rates of dementia worldwide coupled with older adults living longer in the community calls for greater focus on quality home care support services. Few frameworks for quality dementia home care exist though prior findings have found elements considered to be important for “good” home care for people living with dementia. This study aimed to identify core components of a quality home care experience for people with dementia and their caregivers. Methods: As part of a larger research study, in-depth interviews were conducted with persons living with dementia and caregivers (n = 25) to explore hospital-to-home care transitions. The design used for this study was a qualitative description. We used deductive-inductive thematic analysis, which was informed by previous work in this area. Open codes were mapped to pre-determined themes, and for codes not accommodated by an a pior i framework, new themes were developed. Findings: Our findings resulted in 4 overarching themes. Two themes were identified deductively (Availability and Acceptability of Home Care Services) and two inductively (Adaptability and Affordability of Home Care Services). Findings highlight the roles of family—care provider partnerships and responsive support in receiving quality home care, and the cost associated with unmet needs. Interpretation: With an aging population, an increase in home care client acuity, and post-COVID-19 concerns over long-term care, more attention is needed to improve the quality of home care. The demand for these services will continue to increase particularly for those living with dementia and their families. The findings of availability, acceptability, adaptability, and affordability as core to quality care can help lay the groundwork for a home care framework for persons living with dementia and their caregivers. Future research could benefit from comparative analyses to evaluate the applicability of the findings to non-dementia home care service users and caregivers.

AI snapshot

Written from the paper’s full text.

TL;DR

This qualitative study identifies four core components of quality home care for persons living with dementia and their caregivers: availability, acceptability, adaptability, and affordability. It argues these themes can lay groundwork for a dementia home care framework, with family–provider partnerships, responsive support, and the costs of unmet needs as central concerns.

Key findings

  • The analysis produced 4 overarching themes: two deductively identified from Forbes et al. — Availability and Acceptability of Home Care Services — and two inductively developed — Adaptability and Affordability of Home Care Services.
  • Availability included assistance with daily living, in-home respite, home modifications, physical exercise support, and palliative care; gaps led families to pursue private help or long-term care, and COVID-19 amplified service restrictions and feelings of abandonment.
  • Acceptability involved quality dementia care, provider and scheduling consistency, and trusting partnerships; inconsistent providers/scheduling caused frustration, while collaborative family–care coordinator relationships helped mitigate poor services.
  • Affordability captured direct and indirect costs: one family spent about $25,000 CAD in a summer on private PSW charges, another cited $10,000–$12,000 CAD per month, and a $50-per-visit co-payment was described as amounting to $4,800 per year; caregivers also reported early retirement, reduced work hours, and lost income.

Methods

  • Qualitative description within a larger study; 21 interviews were conducted with 25 participants: 4 persons with dementia with their caregiver (spousal = 3, daughter = 1) and 17 caregivers individually. Interviews occurred December 2019–October 2021, averaged 67 minutes (range 38–99), mostly via Zoom, with 3 in-person interviews before the pandemic.
  • Purposeful sampling; inclusion criteria were people aged 65 or older with a mild-to-moderate dementia diagnosis who had experienced a hospital-to-home transition, and/or a family caregiver who cares or previously cared for such a person; dementia diagnosis was based on self-report. Interviewing ended at thematic saturation.
  • Deductive–inductive thematic analysis following Braun and Clarke, mapping open codes to Forbes et al.’s Availability and Acceptability themes and developing new themes where data were not accommodated; rigor included a coding system, peer debriefing, memo writing, and reflexive practice.

Limitations

  • Stated: the deductive analytical approach might force data into a priori codes; only one coder coded the data; the study was not designed to be representative of a wider home care population; the paper states an absence of firsthand accounts from persons living with dementia; and COVID-19 restrictions limited in-person recruitment and data collection.
  • Evident from the text: the sample was heavily weighted toward caregivers (21 caregivers vs. 4 persons with dementia), and many caregivers were caring for someone who had died or moved to long-term care, limiting direct perspectives from persons living with dementia.
  • Evident from the text: findings are situated in the Canadian home care context and during the COVID-19 pandemic, which may shape transferability to other settings or periods.

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

Integrity signals

Registry

Crossref · 10.1371/journal.pone.0274269

Cites

49 of 49 references verified0 citation errors · 0 not checkable

Statistics

Nothing to recompute.

Claims the paper makes

0 of 60 cited sources checked · 0 supported · 0 flagged

  • Findingown data

    In two cases, a sharp increase in patient acuity called for more help, which caregivers requested and received.

    “In two cases, a sharp increase in patient acuity called for more help, which caregivers requested and received.”
    Quote in the paperNot a substantial claim
  • Findingown data

    Inconsistencies and scheduling gaps contributed to increased care provision by caregivers.

    “These inconsistencies and scheduling gaps also contributed to increased care provision by caregivers,”
    Quote in the paperNot a substantial claim
  • Findingown data

    Home care services varied in type, including assistance with daily living, in-home respite, home modifications, support with physical exercise, and palliative care.

    “These services ranged in type by assistance with daily living (i.e., bathing, medication administration), in-home respite, home modifications, support with physical exercise, and palliative care.”
    Quote in the paperNot a substantial claim
  • Findingown data

    Collaborative working relationships among the person with dementia, family caregiver, and provider triad helped to mitigate poor home care services.

    “One factor that helped to mitigate poor home care services was collaborative working relationships among the person with dementia—family caregiver—provider triad.”
    Quote in the paperSubstantial claim
  • Findingown data

    Private personal support workers hired by the family were used to fill in and help manage where public services fell short.

    “In the former cases, private personal support workers (PSWs) hired by the family were used to “fill in” and help manage where the public services fell short,”
    Quote in the paperNot a substantial claim
  • May combine two claims. 31
  • Classified as probably not a substantial claim. 28

  • May combine two claims.

    Findingown data

    Caregivers described challenges of not having enough home care hours, and not being able to access or not knowing what services were available to them.

    “In addition to respite, caregivers described challenges of not having enough home care hours, and not being able to access or not knowing what services were available to them.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    With inadequate hours of care, caregivers were not able to pursue paid work or complete essential tasks, like picking up groceries, because the person they were caring for required constant supervision.

    “With inadequate hours of care, caregivers were not able to pursue paid work or complete essential tasks, like picking up groceries because the person they were caring for required constant supervision.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    Caregivers described respite as essential to their capacity to care, as a form of self-care, and a time when they would not have to think about so many things.

    “Caregivers described the respite as essential to their capacity to care, as a form of self-care, and a time when they “wouldn’t have to think about so many things” (P016, spousal caregiver).”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    Service adaptability involved geographical service transfers, more hours of care, and additional personal support in the home.

    “Service adaptability is noted in several examples and involved geographical service transfers, more hours of care, and additional personal support in the home.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    Family caregivers often reported minimal benefit from publicly funded occupational therapists and physical therapists because these providers could not suggest additional home improvement ideas, their involvement was considered not long enough, and caregivers sensed a lack of coordination between service providers.

    “Family caregivers often reported minimal benefit from the involvement of publicly funded OTs and PTs mostly because these providers couldn’t suggest additional home improvement ideas, their involvement was considered not long enough, and caregivers sensed a lack of coordination between the service providers:”
    Quote in the paperNot a substantial claim

  • Classified as probably not a substantial claim.

    Findingown data

    Quality of dementia care is defined by caregivers in this study as home care service providers who were knowledgeable, well-trained, and shared relevant and useful information.

    “Quality of dementia care is defined by caregivers in this study as home care service providers who were knowledgeable, well-trained, and shared relevant and useful information.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    The analysis resulted in four overarching themes: Availability, Acceptability, Adaptability, and Affordability of home care services; Availability and Acceptability were identified deductively, and Adaptability and Affordability inductively.

    “Our findings resulted in 4 overarching themes. Two themes were identified deductively (Availability and Acceptability of Home Care Services) and two inductively (Adaptability and Affordability of Home Care Services).”
    • Also stated in: § Findings · plain
      “Our analysis resulted in two themes framed by Forbes, Markle-Reid (26) findings that speak to components of a quality home care experience for people with dementia and their caregivers. We also present two additional themes.”
    Quote in the paperSubstantial claim

  • Classified as probably not a substantial claim.

    Findingown data

    Adaptability of home care services was identified as the perception of service adjustment made in response to not only the shifting needs of the person with dementia but also caregiver needs.

    “In our study, adaptability of home care services was identified as the perception of service adjustment made in response to not only the shifting needs of the person with dementia but also caregiver needs as well.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    A dominant experience across many of the caregivers interviewed was both inconsistent providers and scheduling of home care services.

    “A dominant experience across many of the caregivers that were interviewed was both inconsistent providers and scheduling of home care services.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    Gaps in care for those with complex physical and behavioural needs meant poorer outcomes, including skin breakdown, depressed mood, and premature transfer to long-term care.

    “Gaps in care for those with complex physical and behavioural needs meant poorer outcomes. Notably, skin breakdown, depressed mood and premature transfer to LTC care were frequently mentioned.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    For a few caregivers, an absence of respite services resulted in feeling physically and mentally unwell, and even social withdrawal.

    “For a few caregivers, an absence of respite services resulted in feeling physically and mentally unwell, and even social withdrawal,”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingcitation

    The types and availability of home care services centred on personal support with daily living activities, respite care, and to a lesser degree occupational therapy and physical therapy involvement.

    “The types and availability of home care services centred on personal support with daily living activities (bathing, medication administration, eating), respite care and to a lesser degree, OT, and PT involvement.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    Inflexible home care service response occurred when services were withdrawn unexpectedly, reduced without a plan, or could not accommodate specific scheduling requests.

    “Conversely, inflexible service response occurred when home care service was withdrawn unexpectedly, reduced with no plan in place, or was not able to accommodate specific scheduling requests.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    Early or forced retirement, a reduction in work hours, or a temporary leave of absence from a job were all reported by caregivers.

    “Notably, early or forced retirement, a reduction in work hours, or a temporary leave of absence from a job were all reported.”
    Quote in the paperNot a substantial claim

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

    Findingown data

    The reduction in home care service added care responsibility for a caregiver who was already working full-time.

    “It also meant added care responsibility for a caregiver that was already working full-time,”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    Early retirement, loss of wages, and lost productivity due to the burden of care were seen as indirect costs of caring.

    “Early retirement, loss of wages and lost productivity due to the burden of care were also seen as the indirect costs of caring.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    The extent to which home care services were flexible varied and was determined more by the care coordinator than the family caregiver.

    “Yet, the extent to which services were flexible varied and was determined more by the care coordinator than the family caregiver.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    The study found that strong family-care coordinator collaborative partnerships fostered trust, and when these partnerships were not present, caregivers felt disempowered.

    “Unlike other studies that saw few case managers take on an active advocacy role [32], our study findings revealed novel insights around strong family—care coordinator collaborative partnerships that fostered trust, and when not present, caregivers were left with a sense of disempowerment.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Premisecitation

    Prior studies have identified elements considered important for "good" home care for people living with dementia, including the availability of formal home care services and support, and the perceived knowledge, security and dignity needed to care for a person with dementia.

    “In contrast, studies have identified elements considered to be important for “good” home care for people living with dementia [11,15–17]. These elements include the availability of formal home care services and support, in addition to the perceived knowledge, security and dignity needed to care for a person with dementia [11,15].”
    Quote in the paperSubstantial claim0 of 4 sources checked
    • cites [11] P Lindeza, 2020, Impact of dementia on informal care: a systematic review of family caregivers’ perceptions, BMJ Supportive & Palliative Care

      Not checked in the free run.

    • cites [15] AM Goh, 2022, What constitutes ‘good’home care for people with dementia? An investigation of the views of home care service recipients and providers, BMC geriatrics

      Not checked in the free run.

    • cites [16] R Breen, 2021, Quality home care for persons living with dementia: Personal support workers’ perspectives in Ontario, Canada, Health & social care in the community

      Not checked in the free run.

    • cites [17] M Polacsek, 2020, ‘I know they are not trained in dementia’: Addressing the need for specialist dementia training for home care workers, Health & social care in the community source

      Not checked in the free run.

  • May combine two claims.

    Premisecitation

    Access to formal home care can support caregivers in managing daily challenges of providing care for persons living with dementia and can delay entry into long-term care.

    “Access to formal home care can support caregivers in their role in helping to manage the daily challenges of providing care for persons living with dementia, care, can even delay entry into long-term care (LTC) [10,11].”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites [10] L Annerstedt, 2000, An analysis of the caregiver’s burden and the" breaking-point" when home care becomes inadequate, Scandinavian journal of public health source

      Not checked in the free run.

    • cites [11] P Lindeza, 2020, Impact of dementia on informal care: a systematic review of family caregivers’ perceptions, BMJ Supportive & Palliative Care

      Not checked in the free run.

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

    Premisecitation

    Forbes and colleagues (2008) previously identified the availability and acceptability of formal services as central to positive home and community care experiences.

    “While few frameworks for quality dementia home care exist for use in general health settings [18], Forbes and colleagues (2008) previously identified the availability and acceptability of formal services as central to positive home and community care experiences.”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites Forbes et al., 2008 source

      Not checked in the free run.

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

    Study design and conductnone given

    Ethical approval and subsequent amendments to the study design were granted by Sinai Health's Research Ethics Board and the University of Toronto's affiliated Research Ethics Board.

    “Ethical approval and subsequent amendments to the study design were granted by Sinai Health’s Research Ethics Board and the University of Toronto’s affiliated Research Ethics Board.”
    Quote in the paperNot a substantial claim

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

    Study design and conductcitation

    Rigor was determined using a set of strategies including a coding system, and peer debriefing with other researchers and clinicians.

    “Rigor was determined using a set of strategies including a coding system, and peer debriefing with other researchers and clinicians [22,23].”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites [22] JM Morse, 2015, Critical analysis of strategies for determining rigor in qualitative inquiry, Qualitative health research source

      Not checked in the free run.

    • cites [23] KJ Colorafi, 2016, Qualitative descriptive methods in health science research, HERD: Health Environments Research & Design Journal 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 conductown data

    Interviewing ended on reaching thematic saturation, which was identified as the point when no newly identified codes or themes emerged from the final interviews.

    “Interviewing ended on reaching thematic saturation, which we identified as the point when no newly identified codes or themes emerged from the final interviews.”
    Quote in the paperNot a substantial claim

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

    Premisecitation

    A recent study centered on care transitions identified the quality of home care as central for patients and family caregivers.

    “A recent study centered on care transitions identified the quality of home care as central for patients and family caregivers [12].”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [12] T Kiran, 2020, Patient and caregiver priorities in the transition from hospital to home: results from province-wide group concept mapping, BMJ Quality & Safety source

      Not checked in the free run.

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

    Premisecitation

    Compared to community dwellers without dementia, those with dementia are more likely to use home care support services over time.

    “Compared to community dwellers without dementia, those with dementia are more likely to use home care support services over time [5,6].”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites [5] SE Bronskill, 2020, Trajectories of health system use and survival for community-dwelling persons with dementia: a cohort study, BMJ open source

      Not checked in the free run.

    • cites [6] L Mondor, 2019, The Incremental Health Care Costs of Frailty Among Home Care Recipients With and Without Dementia in Ontario, Canada, Medical care source

      Not checked in the free run.

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

    Premisecitation

    Extensive home care use among people living with dementia occurs at a rate between 22% and 27.5% of all home care clients in Ontario.

    “Other studies have shown extensive home care use among those living with dementia at a rate between 22% and 27.5% of all home care clients in Ontario [28,29].”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites [28] L Mondor, 2017, Multimorbidity and healthcare utilization among home care clients with dementia in Ontario, Canada: a retrospective analysis of a population-based cohort, PLoS medicine source

      Not checked in the free run.

    • cites [29] M Vu, 2014, A comprehensive profile of the sociodemographic, psychosocial and health characteristics of Ontario home care clients with dementia, Chronic diseases and injuries in Canada

      Not checked in the free run.

  • May combine two claims.

    Premisecitation

    Barriers to the use of respite by caregivers of people with dementia include not knowing where to find information, poor quality dementia care, and caregivers' feelings of guilt, which lead to underutilization of in-home and adult day program respite services.

    “Barriers to the use of respite by caregivers of people with dementia include not knowing where to find information, poor quality dementia care, and caregivers’ feelings of guilt, which lead to underutilization of in-home and adult day program respite services [38,39].”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites [38] LJ Parker, 2020, Racial differences in respite use among black and white caregivers for people living with dementia, Journal of Aging and Health source

      Not checked in the free run.

    • cites [39] M-C Leocadie, 2018, Barriers and enablers in the use of respite interventions by caregivers of people with dementia: an integrative review, Archives of Public Health

      Not checked in the free run.

  • May combine two claims.

    Interpretationown data

    Parallel caregiving and working were sources of stress for caregivers because inadequate availability of service resulted in a reduction in both income and quality of life.

    “Parallel caregiving and working were sources of stress for caregivers since inadequate availability of service resulted in a reduction both in income and quality of life.”
    Quote in the paperNot a substantial claim

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

    Study design and conductcitation

    Engaging in memo writing and reflexive practice served as a way of establishing rigor.

    “Engaging in memo writing and reflexive practice also served as a way of establishing rigor [24].”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [24] H Rettke, 2018, Using reflexive thinking to establish rigor in qualitative research, Nursing Research source

      Not checked in the free run.

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

    Premisecitation

    Home care services rebounded to historical highs.

    “Personal care and therapies for persons with dementia were significantly interrupted, although, home care services rebounded to historical highs [8,34].”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites [8] A Jones, 2021, Impact of the COVID-19 pandemic on home care services among community-dwelling adults with dementia, Journal of the American Medical Directors Association source

      Not checked in the free run.

    • cites [34] AO van den Bulck, 2022, In the eye of the storm: A quantitative and qualitative account of the impact of the COVID-19 pandemic on dutch home healthcare, International Journal of Environmental Research and Public Health source

      Not checked in the free run.

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

    Study design and conductcitation

    In interviews that happened in-person, ongoing assent (or dissent) was observed during the interview process.

    “In interviews that happened in-person, ongoing assent (or dissent) was observed during the interview process [25].”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [25] S Slaughter, 2007, Consent and assent to participate in research from people with dementia, Nursing Ethics 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 conductcitation

    The analysis utilized a priori concepts and their definitions, but new themes were created inductively where data were not accommodated by the framework to avoid forcing data into prescribed categories.

    “While the analysis utilized a priori concepts and their definitions, new themes were also created inductively where data were not accommodated by the framework to avoid forcing data into prescribed categories [21].”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [21] C Carroll, 2013, “Best fit” framework synthesis: refining the method, BMC medical research methodology source

      Not checked in the free run.

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

    Premisecitation

    50.6% of people diagnosed with moderate to severe dementia living in the community were identified as fully dependent with moderate to severe frailty and support needs in many areas.

    “For example, one study showed that 50.6% of people diagnosed with moderate to severe dementia living in the community were identified as “fully dependent” with moderate to severe “frailty” and support needs in many areas; food preparation, medication administration, falls prevention and looking after the home [30].”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [30] W Abreu, 2019, The relationship between frailty, functional dependence, and healthcare needs among community‐dwelling people with moderate to severe dementia, Health & social care in the community source

      Not checked in the free run.

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

    Study design and conductnone given

    When signed consent was not possible due to COVID-19 restrictions, verbal informed consent was received and recorded before the interview from every study participant.

    “When signed consent was not possible due to COVID-19 restrictions, we received and recorded verbal informed consent before the interview starting from every study participant.”
    Quote in the paperNot a substantial claim

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

    Study design and conductnone given

    For persons living with dementia who could not provide written informed consent, consent was obtained from a substitute decision maker.

    “For persons living with dementia who could not provide written informed consent, consent was obtained from a substitute decision maker.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Interpretationreasoning

    The demand for home care suggests that affected individuals and their families desire to stay in their own homes and that their care needs are chronic and complex.

    “The demand for home care is suggestive of both the affected individual and their families desire to stay in their own homes and the care needs of these individuals as being chronic and complex.”
    Quote in the paperNot a substantial claim

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

    Study design and conductnone given

    The analysis had drawbacks: a deductive analytical approach that might force data into a priori codes, and only one coder coding the data.

    “Drawbacks to the analysis include a deductive analytical approach that might potentially force data into the a priori codes and having only one coder code the data.”
    Quote in the paperNot a substantial claim

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

    Premisecitation

    In contrast to other chronic conditions, dementia is perceived as a more challenging condition to manage.

    “Although, in contrast to other chronic conditions, dementia is perceived as a more challenging condition to manage [55].”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [55] DP Harris, 2009, Primary care providers’ views of challenges and rewards of dementia care relative to other conditions, Journal of the American Geriatrics Society source

      Not checked in the free run.

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

    Premisecitation

    Previous findings echo frustration over inconsistent scheduling and staffing.

    “Similarly, previous findings echo frustration over inconsistent scheduling and staffing [17].”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [17] M Polacsek, 2020, ‘I know they are not trained in dementia’: Addressing the need for specialist dementia training for home care workers, Health & social care in the community source

      Not checked in the free run.

  • May combine two claims.

    Premisecitation

    Home care case managers tend to pay more attention to the lack of available resources or system pressures when making care decisions, while family caregivers consider the relational effects that decisions would have on the family unit.

    “For example, home care case managers tend to pay more attention to the lack of available resources or system pressures when making care decisions while family caregivers consider the relational effects that decisions would have on the family unit [50].”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [50] O St-Amant, 2012, Making care decisions in home-based dementia care: why context matters, Canadian Journal on Aging/La revue canadienne du vieillissement source

      Not checked in the free run.

  • May combine two claims.

    Premisecitation

    Personal support workers identify person-centred approaches as essential to quality dementia home care, but time constraints, task-oriented models of care, and limited training make it challenging to deliver a high standard of care.

    “Recent study findings found that PSWs can identify person-centred approaches to care as essential to quality dementia home care; however, time constraints, task-oriented models of care, and limited training make it challenging to deliver a high standard of care [16,42].”
    Quote in the paperSubstantial claim0 of 2 sources checked
    • cites [16] R Breen, 2021, Quality home care for persons living with dementia: Personal support workers’ perspectives in Ontario, Canada, Health & social care in the community

      Not checked in the free run.

    • cites [42] P Kamalraj, 2021, Communication in home care: Understanding the lived experiences of formal caregivers communicating with persons living with dementia, International Journal of Older People Nursing source

      Not checked in the free run.

  • Classified as probably not a substantial claim.

    Premisecitation

    Sutherland and Wiersma outline three values as key to any discussion involving dementia policy, strategy, or change: the rights of people with dementia, diversity and equity, and inclusion, all framed by a citizenship lens.

    “Sutherland and Wiersma (56) outline three values as key to any discussion that involves dementia policy, strategy, or change: the rights of people with dementia, diversity and equity, and inclusion, all framed by a citizenship lens.”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites [56] N Sutherland, 2016, Three Values That Should Underlie Community-Based Dementia Care Strategies, Healthcarepapers source

      Not checked in the free run.

  • May combine two claims.

    Premisecitation

    Family caregivers take on many unpaid tasks with little preparation, such as supervision and training, care coordination, and building relationships, which effectively removes family caregivers from the workforce.

    “Family caregivers take on many unpaid tasks with little preparation, like supervision and training, care coordination, and building relationships [54], which effectively removes family caregivers from the workforce.”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [54] JM Reckrey, 2022, “I Am the Home Care Agency”: The Dementia Family Caregiver Experience Managing Paid Care in the Home, International Journal of Environmental Research and Public Health source

      Not checked in the free run.

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

    Premisecitation

    Informal caregiver burden is well documented in the dementia literature, and burden increases with poor quality and lack of continuity of care.

    “Informal caregiver burden is well documented in the dementia literature [40], as is the increase of burden with poor quality and lack of continuity of care [41].”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites [40] E Papastavrou, 2007, Caring for a relative with dementia: family caregiver burden, Journal of advanced nursing source

      Not checked in the free run.

    • cites [41] EL Dalgarno, 2021, Home care in dementia: The views of informal carers from a co-designed consultation, Dementia source

      Not checked in the free run.

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

    Premisecitation

    Informal costs are the main cost drivers at 60 to 84%, followed by medication costs and direct non-medical costs.

    “Data suggests informal costs (amount of informal caregiver’s time provided for care) are the main cost drivers at 60 to 84%, followed by medication costs and direct non-medical costs (paid help or transport) [53].”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [53] S Schaller, 2015, The main cost drivers in dementia: a systematic review, International journal of geriatric psychiatry source

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S4 (based).

    Interpretationnone given

    Negative attitudes about dementia and inadequate support could make people with dementia more vulnerable to excessive disability and premature long-term care placement.

    “Negative attitudes about dementia and inadequate support could make those with dementia more vulnerable to excessive disability and premature LTC placement.”
    Quote in the paperNot a substantial claim
    • Rests on an assumption: People with dementia and their families rely heavily on a support network of social and health service resources.

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

    Study design and conductnone given

    The study design had the flexibility to develop a deeper understanding of quality dementia home care and the potential to advance the dementia home care quality agenda.

    “From an applied health research perspective, our study design had the flexibility to develop a deeper understanding of quality dementia home care, and even the potential to advance the dementia home care quality agenda.”
    Quote in the paperSubstantial claim

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

    Premisecitation

    Discretion in home care can be inequitable, inadequate, or inconsistent, which may lead to sub-optimal or discrepant decisions across cases.

    “Such discretion can be thought of as inequitable, inadequate, or inconsistent, which may lead to sub-optimal or discrepant decisions across cases [51].”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [51] A Peckham, 2014, Balancing formal and informal care for older persons: how case managers respond, Canadian Journal on Aging/La Revue canadienne du vieillissement source

      Not checked in the free run.

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

    Study design and conductnone given

    Input from different researchers provided greater rigour to the interpretation process.

    “Although, input from different researchers provided greater rigour to the interpretation process.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Premisecitation

    Canadian literature has identified variable resource allocation in home care and factors including differences in older clients and caregivers, and discretion and flexibility based on professional training and insight.

    “Canadian literature has identified variable resource allocation in home care and the factors at play, including differences in the older client and caregivers themselves, as well as the discretion and flexibility based on professional training and insight [51].”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [51] A Peckham, 2014, Balancing formal and informal care for older persons: how case managers respond, Canadian Journal on Aging/La Revue canadienne du vieillissement source

      Not checked in the free run.

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

    Study design and conductnone given

    The use of preconceived definitions of quality home care services by Forbes et al. (2008) enabled clear delineation between themes.

    “The use of preconceived definitions of quality home care services by Forbes et al. (2008) enabled clear delineation between themes.”
    Quote in the paperNot a substantial claim
52 of 52

  • The paper relies on this without support.

    There is no recent overarching understanding in the literature of what defines quality home care and associated best practices for persons living with dementia in the community.

    “However, absent from the literature is a recent overarching understanding of what defines quality home care and associated best practices for those living with dementia in the community.”

  • The paper relies on this without support.

    The progressively debilitating and dependency-provoking nature of dementia causes family caregivers to provide the bulk of support.

    “Due to the progressively debilitating and dependency provoking nature of dementia, family caregivers provide the bulk of support.”

  • The paper relies on this without support.

    The majority of people living with dementia are cared for in their own home by family.

    “Since the majority of those living with dementia are cared for in their own home by family, the economic burden falls on families rather than the health system.”

  • The paper relies on this without support.

    People with dementia and their families rely heavily on a support network of social and health service resources.

    “People with dementia and their families also rely heavily on a support network of social and health service resources.”
4 of 4

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?

  • There is limited literature exploring challenges of scheduling consistency for PSWs in home care delivery and pressures this causes for delivering high-quality care.

    “Despite critical issues of delivering continuity of care, there is limited literature exploring challenges of scheduling consistency for PSWs in home care delivery and pressures this causes for delivering high-quality care [10, 42].”

    From The hospital-to-home care transition experience of home care clients: an exploratory study using patient journey mapping (2023) · cites this paper as [10]

    In “Acceptability of home care services” (page not provided), caregivers describe inconsistent PSWs and schedules, disrupted care, and concerns about the quality of dementia care. The Discussion (page not provided) links scheduling consistency and continuity to care quality. The paper does not establish that literature on these scheduling challenges is limited, or specifically examine the pressures they place on PSWs delivering care. (LLM, conf=0.86)

    Experimental — accuracy not yet measured

  • Other research has detailed the importance of consistent PSWs in building trusting relationships with clients and families and delivering tailored care to match client needs and preferences.

    “Other research has detailed the importance of consistent PSWs in building trusting relationships with clients and families and delivering tailored care to match client needs and preferences [10, 43].”

    From The hospital-to-home care transition experience of home care clients: an exploratory study using patient journey mapping (2023) · cites this paper as [10]

    In ‘Acceptability of home care services,’ caregivers describe the value of consistent PSWs, and one describes two PSWs who knew her husband and personalized his care. The Discussion links relational continuity to personalized care and trust, but its specific example of trust with families concerns care coordinators, not PSWs; that part of the claim is not directly supported. (LLM, conf=0.78)

    Experimental — accuracy not yet measured

  • Research has similarly linked care partners' mental and physical health to PWD care quality and long-term care admission timing.

    “Research has similarly linked care partners’ mental and physical health to PWD care quality and long-term care admission timing (Saragosa et al., 2022).”

    From Acceptance and Commitment Therapy Tele-Counselling Program With Care Partners of Persons Living With Dementia: A Pilot Feasibility RCT. (2026) · cites this paper as Saragosa et al., 2022

    In the Availability of home care services section (page not provided), caregivers describe feeling physically and mentally unwell without respite, while respite is described as essential to their capacity to care. The same section links gaps in home care to poorer outcomes for people with dementia and premature long-term care transfer. It does not directly establish that care partners’ mental and physical health determines care quality or admission timing. (LLM, conf=0.84)

    Experimental — accuracy not yet measured

Self-check

Percentages, sums and reported differences re-computed from the paper’s own numbers.

Each contradiction between two passages listed here was confirmed by an independent check.

  • Forbes et al. is cited with the wrong reference number

    Minor

    The discussion labels reference 22 as Forbes et al.'s 2008 work, but reference 22 is a 2015 paper by Morse. Forbes et al.'s 2008 paper is listed as reference 26.

1 of 1

Cites

Flagged first, then by citations

Research works printed but not linked: 2

  1. Alzheimer Society of Canada, 2016, Prevalence and Monetary Costs of Dementia in Canada
  2. V Braun, 2012, Thematic analysis

Cited by

Sorted by citations

Related

Authors
Saragosa, M., Jeffs, L., Okrainec, K., & Kuluski, K.
Affiliations
  • University of Toronto (CA)
  • University Health Network (CA)
Corresponding author
Saragosa, Marianne
ORCID
Venue
PLOS ONE
Publisher
Public Library of Science (PLoS)
Published
2022-09-13
Volume
17
Issue
9
Pages
e0274269
ISSN
1932-6203 (ISSN-L)
DOI
10.1371/journal.pone.0274269
PMC
PMC9469964
OpenAlex
W4295494474
Semantic Scholar
6daedd0d487e40bac6b7691e9ee6903805ad5a67
Cited by
10
References
49
Citations by year
2026: 1 · 2025: 2 · 2024: 5 · 2023: 2
FWCI
2.58
Type
journal article
Language
en
Open access
Licence
Locations
  • PLoS ONE (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
Funders
  • CIHR (512834)
  • VHA Home Healthcare (512668)
Topics
  • Health Sciences › Health Professions › General Health Professions › Geriatric Care and Nursing Homes
  • Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
  • Health Sciences › Health Professions › Pharmacy › Nursing care and research
Keywords
dementia, home care, quality of care, caregivers, hospital-to-home transition, acceptability of care, health care affordability, unmet needs, long-term care
MeSH terms
COVID-19, Aged, Home Care Services, Humans, Quality of Health Care, Caregivers, 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.

Claims read by deepseek-v4.1-flash under definition version 3 (extract-v3) on 2026-10-09.

Classified by jev-1.13-20260917 (gold-guideline-v0.2) on 2026-10-09.

Statistics and arithmetic are recomputed, not judged.

Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.

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