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Cited by 16Geriatric Care and Nursing HomesDementia and Cognitive Impairment ResearchHospital Admissions and Outcomes

Unique Care Needs of People with Dementia and Their Caregivers during Transitions from Skilled Nursing Facilities to Home and Assisted Living: A Qualitative Study

Open access
Toles, Mark, Leeman, Jennifer, Gwyther, Lisa, Vu, Maihan, Vu, Thi, Hanson, Laura C.·2022·Journal of the American Medical Directors Association
DOI 10.1016/j.jamda.2022.06.021PMC PMC9801685
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Abstract

Objectives: The purpose of the study was to describe unique care needs of people with dementia (PWD) and their caregivers during transitions from skilled nursing facilities (SNF) to home. Design: A qualitative study using focus groups, semi-structured interviews, and descriptive qualitative analysis. Setting and Participants: The study was set in one state, in 4 SNFs where staff had experience using a standardized transitional care protocol. The sample included 22 SNF staff, 4 home health nurses, 10 older adults with dementia, and their 10 family caregivers, of whom 39 participated in focus groups and/or interviews. Methods: Data collection included 4 focus groups with SNF staff and semi-structured interviews with home health nurses, SNF staff, PWD, and their family caregivers. Standardized focus group and interview guides were used to elicit participant perceptions of transitional care. We used the framework analytic approach to qualitative analysis. A steering committee participated in interpretation of findings. Results: Participants described four unique care needs: (1) PWD and caregivers may not be ready to fully engage in dementia care planning while in the SNF, (2) caregivers are not prepared to manage dementia symptoms at home, (3) SNF staff have difficulty connecting PWD and caregivers to community supports, and (4) caregivers receive little support to address their own needs. Conclusions and Implications: Based on findings, recommendations are offered for adapting transitional care to address the needs of PWD and their caregivers. Further research is needed (1) to confirm these findings in larger, more diverse samples and (2) to adapt and test interventions to support successful community discharge of PWD and their caregivers.

AI snapshot

Written from the paper’s full text.

TL;DR

This qualitative study describes four unique care needs of people with dementia and their caregivers during transitions from skilled nursing facilities to home or assisted living. Findings suggest caregivers are often unprepared for dementia symptom management and their own support needs, and SNF staff struggle to connect families to community supports.

Key findings

  • Participants identified four unique care needs: (1) PWD and caregivers may not be ready to engage in dementia care planning while in the SNF, (2) caregivers are not prepared to manage dementia symptoms at home, (3) SNF staff have difficulty connecting PWD and caregivers to community supports, and (4) caregivers receive little support to address their own needs.
  • The study included 39 participants: 22 SNF staff, 4 home health nurses, 10 older adults with dementia, and 10 family caregivers; 8 PWD transferred from SNF to home and 2 to assisted living.
  • Six participants had a documented dementia diagnosis, and four others had BIMS scores <13 consistent with probable dementia; most index hospital stays were for acute infections (40%) or hip/pelvic fractures (40%).
  • Caregivers reported managing more than 10 medications per day, difficulty managing pain and resistance, and three caregivers reported falls shortly after returning home; SNF staff cited cost and service refusal as barriers to community supports.

Methods

  • Qualitative study conducted August 2020–July 2021 using focus groups and semi-structured interviews in four SNFs that had experience with the Connect-Home transitional care protocol.
  • Data collection included 4 focus groups with SNF staff and interviews with home health nurses, SNF staff, PWD, and family caregivers; telephone interviews occurred within 30 days after SNF discharge.
  • Analysis used the five-stage framework analytic approach in ATLAS.ti 9.0, with double coding, a steering committee for interpretation, and reporting per COREQ.

Limitations

  • The paper states that generalizability is limited by the small sample from four SNFs in a single organization in one state, and that sample size may have prevented saturation.
  • The paper also states reliance on cognitive impairment measures and diagnosis to define the study population, and lack of diversity in the PWD and caregiver sample, who reported white race.
  • Evident from the text: only 3 PWD were able to participate in interviews while 10 caregivers did, and only 2 PWD transferred to assisted living, limiting direct PWD perspectives and comparisons by discharge setting.

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

Integrity signals

Registry

Crossref · 10.1016/j.jamda.2022.06.021

Cites

40 of 40 references verified0 citation errors · 0 not checkable

Statistics

Nothing to recompute.

Claims the paper makes

0 of 34 cited sources checked · 0 supported · 0 flagged

  • Findingown data

    Caregivers receive little support to address their own needs.

    “caregivers receive little support to address their own needs”
    Quote in the paperSubstantial claim
  • Findingown data

    Multiple staff highlighted the specific challenge of helping people with dementia and caregivers to recognize the need for someone to be present 24 hours a day, 7 days a week.

    “Multiple staff highlighted the specific challenge of helping PWD and caregivers to recognize the need for someone to be present 24 hours a day, 7 days a week.”
    Quote in the paperNot a substantial claim
  • Findingown data

    Some caregivers were surprised when loved ones with dementia experienced worsened confusion and distress.

    “Some caregivers were surprised when loved ones with dementia experienced worsened confusion and distress.”
    Quote in the paperNot a substantial claim
  • Findingown data

    When skilled nursing facility staff were able to connect people with dementia and caregivers to community supports, the person with dementia sometimes terminated the support.

    “Furthermore, when SNF staff were able to connect PWD and caregivers to community supports, the PWD sometimes terminated the support.”
    Quote in the paperNot a substantial claim
  • Findingown data

    Caregivers reported being unprepared to manage the impact of dementia symptoms on their efforts to manage co-occurring illnesses.

    “Caregivers reported being unprepared to manage the impact of dementia symptoms on their efforts to manage co-occurring illnesses.”
    Quote in the paperSubstantial claim
  • Classified as probably not a substantial claim. 20
  • May combine two claims. 13

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

    Findingown data

    People with dementia and caregivers in the sample reported white race.

    “PWD and caregivers reported white race.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    The sample included 6 individuals with documented diagnosis of dementia; four others, with Brief Inventory for Mental Status scores less than 13, had persistent problems with thinking and memory that affected function, consistent with probable dementia.

    “The sample included 6 individuals with documented diagnosis of dementia; four others, with BIMS scores less than 13, had persistent problems with thinking and memory that affected function, consistent with probable dementia.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    When caregivers were asked how prepared they were to take care of themselves, some related stories of resilience, while others described feeling uncertain, frantic, and exhausted.

    “When caregivers were asked, “How prepared are you to take care of yourself?” some related stories of resilience. “I learned that I need to stop and do things for myself” (Participant 28); others described feeling “uncertain,” “frantic,” and “exhausted.””
    Quote in the paperNot a substantial claim

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

    Findingown data

    Some skilled nursing facility staff reported that they had limited knowledge about managing dementia care at home.

    “Some SNF staff reported that they had limited knowledge about managing dementia care at home.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    Caregivers administered more than 10 medications per day and described difficulty with family members who resisted taking medications.

    “caregivers administered more than 10 medications per day and described difficulty with family members who resisted taking medications.”
    Quote in the paperNot a substantial claim

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

    Premisecitation

    Some evidence suggests effectiveness of transitional care in skilled nursing facilities.

    “some evidence suggests effectiveness in SNFs.11, 12”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites [11] Gardner, 2020, Reducing hospital readmissions through a skilled nursing facility discharge intervention: a pragmatic trial, J Am Med Dir Assoc source

      Not checked in the free run.

    • cites [12] Toles, 2016, Transitional care of older adults in skilled nursing facilities: a systematic review, Geriatr Nurs source

      Not checked in the free run.

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

    Premisecitation

    Studies demonstrate the effectiveness of transitional care at improving outcomes after transitions from hospital to home.

    “Studies demonstrate the effectiveness of transitional care at improving outcomes after transitions from hospital to home;9, 10”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites [9] Le Berre, 2017, Impact of transitional care services for chronically ill older patients: a systematic evidence review, J Am Geriatr Soc source

      Not checked in the free run.

    • cites [10] Verhaegh, 2017, An exploratory study of healthcare professionals' perceptions of interprofessional communication and collaboration, J Interprof Care source

      Not checked in the free run.

  • May combine two claims.

    Premisecitation

    The transition from skilled nursing facilities (SNF) to home is challenging for people with dementia (PWD), who are at risk for poor nutrition, hydration, pain control, and new health problems (e.g., respiratory infections) resulting in re-hospitalizations.

    “The transition from SNF to home is challenging for people with dementia (PWD), who are at risk for poor nutrition, hydration, pain control, and new health problems (e.g., respiratory infections) resulting in re-hospitalizations.4, 5”
    Quote in the paperSubstantial claim0 of 2 sources checked
    • cites [4] Sloane, 2017, New or worsening symptoms and signs in community-dwelling persons with dementia: incidence and relation to use of acute medical services, J Am Geriatr Soc source

      Not checked in the free run.

    • cites [5] Richardson, 2019, Stakeholder perspectives of care for people living with dementia moving from hospital to care facilities in the community: a systematic review, BMC Geriatr source

      Not checked in the free run.

  • Classified as probably not a substantial claim.

    Study design and conductnone given

    The rationale for setting the research in these skilled nursing facilities was to elicit perspectives of stakeholders with experience using a transitional care model.

    “The rationale for setting the research in these SNFs was to elicit perspectives of stakeholders with experience using a transitional care model.”
    Quote in the paperSubstantial claim

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

    Premisecitation

    Other research suggests that discharge processes may be rushed and provide families limited time for planning effectively.

    “Other research suggests that discharge processes may be rushed and provide families limited time for planning effectively.31”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [31] Kable, 2015, Health professional perspectives on systems failures in transitional care for patients with dementia and their carers: a qualitative descriptive study, BMC Health Serv Res source

      Not checked in the free run.

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

    Study design and conductnone given

    A standardized instrument was used to abstract data from medical records, such as people with dementia age, sex, gender and primary diagnosis.

    “A standardized instrument was used to abstract data from medical records, such as PWD age, sex, gender and primary diagnosis.”
    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 conductown data

    The study was supported by a steering committee comprised of caregivers of people with dementia, research team members, and a skilled nursing facility executive, which reviewed study procedures and supported interpretation of findings.

    “The study was supported by a steering committee, comprised of caregivers of PWD (recruited from an adult day program), research team members, and a SNF executive. Committee members participated in virtual (Zoom) meetings to review study procedures and support interpretation of findings.”
    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 conductreasoning

    Strengths of the study were setting the study in skilled nursing facilities where staff had experience using a transitional care model and the steering committee that assisted in interpretation of findings.

    “Other strengths were setting the study in SNFs where staff had experience using a transitional care model and our steering committee that assisted in interpretation of findings.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Study design and conductreasoning

    The research team used data from multiple points of view, which facilitated triangulation of data and bolstered the validity of findings.

    “The research team – with expertise in transitional care, geriatrics, and dementia – used data from multiple points of view, which facilitated our ability to triangulate data and bolster the validity of findings.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Interpretationown data

    Skilled nursing facility staff have limited knowledge or skills related to dementia or how to manage symptoms of dementia at home or to access resources available in the community.

    “Our findings suggest SNF staff have limited knowledge/skills related to dementia or how to manage symptoms of dementia at home or to access resources available in the community.”
    Quote in the paperSubstantial claim

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

    Study design and conductnone given

    In this low risk study, judgement of skilled nursing staff was used to discover capacity of individuals to consent.

    “In this low risk study, we used judgement of skilled nursing staff to discover capacity of individuals to consent.”
    Quote in the paperNot a substantial claim

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

    Study design and conductnone given

    Skilled nursing facility staff were purposefully sampled to maximize years of experience and diversity of roles in the transitional care process.

    “We purposefully sampled SNF staff to maximize years of experience and diversity of roles in the transitional care process.”
    Quote in the paperNot a substantial claim

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

    Study design and conductreasoning

    Limitations in the sample size may have prevented saturation.

    “Limitations in the sample size may have prevented saturation; thus, future research is needed to explore differences in the needs of PWD and their caregivers, for example, when the PWD is discharged to assisted living versus home.”
    Quote in the paperNot a substantial claim

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

    Study design and conductnone given

    Another limitation was reliance on measures of cognitive impairment and diagnosis to arrive at the study population.

    “Another limitation, as with other studies of dementia, was our reliance on measures of cognitive impairment and diagnosis to arrive at the study population.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Interpretationown data

    The findings support and extend earlier research and provide evidence for adapting transitional care of people with dementia and their caregivers.

    “While limited by our study design and sample, the findings support and extend earlier research, and provide evidence for adapting transitional care of PWD and their caregivers, as described below.”
    Quote in the paperSubstantial claim

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

    Study design and conductnone given

    Team members double coded the transcripts and met regularly to discuss and resolve any coding discrepancies.

    “In stage 3, team members (MV, JL, TV) double coded the transcripts and met regularly to discuss and resolve any coding discrepancies.”
    Quote in the paperNot a substantial claim

  • Classified as probably not a substantial claim.

    Premisecitation

    The Connect-Home framework posits that transitional care requires structures (e.g., staff training and tools in the electronic health record) to support time-limited processes designed to address care needs at home (e.g., safety, symptom management) and improve patient and caregiver outcomes.

    “the framework posits that transitional care requires structures (e.g., staff training and tools in the electronic health record) to support the time-limited processes designed to address care needs at home (e.g., safety, symptom management) and improve patient and caregiver outcomes.23, 24”
    Quote in the paperSubstantial claim0 of 2 sources checked
    • cites [23] Toles, 2016, Transitional care in skilled nursing facilities: a multiple case study, BMC Health Serv Res source

      Not checked in the free run.

    • cites [24] Berkowitz, 2013, Project ReEngineered Discharge (RED) lowers hospital readmissions of patients discharged from a skilled nursing facility, J Am Med Dir Assoc source

      Not checked in the free run.

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

    Study design and conductown data

    The transcripts of interviews with caregivers of individuals who transferred to assisted living were retained in the analysis after determining they included themes similar to caregivers for individuals who transferred to home.

    “We retained the transcripts of interviews with caregiver of individuals who transferred to assisted living in the analysis after determining they included themes similar to caregivers for individuals who transferred to home.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Interpretationreasoning

    Caregivers need more detailed information on reducing safety risks in the skilled nursing facility, and they may not be ready to fully engage with that information until after the transition to home.

    “Adding to this research, our findings suggest that caregivers need more detailed information on reducing safety risks in the SNF, and that they may not be ready to fully engage with that information until after the transition to home.”
    Quote in the paperSubstantial claim

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

    Study design and conductnone given

    Approval for study activities was obtained from the Institutional Review Board at University of North Carolina at Chapel Hill.

    “Approval for study activities was obtained from the Institutional Review Board at University of North Carolina at Chapel Hill.”
    Quote in the paperNot a substantial claim

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

    Premisecitation

    The responsibilities of caregivers in dementia are known to exceed many other caregiving roles.

    “The responsibilities of caregivers in dementia are known to exceed many other caregiving roles.36, 37”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites [36] Bertrand, 2006, Are all caregivers created equal? Stress in caregivers to adults with and without dementia, J Aging Health

      Not checked in the free run.

    • cites [37] Moon, 2015, Baby boomer caregiver and dementia caregiving: findings from the National Study of Caregiving, Age Ageing source

      Not checked in the free run.

  • May combine two claims.

    Premisecitation

    In quasi-experimental studies, hospital-based transitional care for people with dementia, compared to usual care, was associated with fewer hospital readmissions and decreased caregiver burden.

    “In quasi-experimental studies, hospital-based transitional care for PWD, compared to usual care, was associated with fewer hospital readmissions and decreased caregiver burden.17–19”
    Quote in the paperNot a substantial claim0 of 3 sources checked
    • cites [17] Boustani, 2011, Implementing innovative models of dementia care: the healthy aging brain center, Aging Ment Health source

      Not checked in the free run.

    • cites [18] Naylor, 2014, Comparison of evidence-based interventions on outcomes of hospitalized, cognitively impaired older adults, J Comp Eff Res source

      Not checked in the free run.

    • cites [19] Terayama, 2018, Caregivers' education decreases depression symptoms and burden in caregivers of patients with dementia, Psychogeriatrics source

      Not checked in the free run.

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

    Study design and conductcitation

    Findings were reported using the Consolidated Criteria for Reporting Qualitative Research (COREQ).

    “Findings were reported using the Consolidated Criteria for Reporting Qualitative Research (COREQ).25”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [25] Tong, 2007, Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups, Int J Qual Health Care source

      Not checked in the free run.

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

    Premisecitation

    Earlier studies reported similar challenges and demonstrated the value of educating people with dementia and family caregivers on how to lessen emotional and behavioral symptoms of dementia.

    “Earlier studies reported similar challenges31–33 and demonstrated the value of educating PWD and family caregivers on how to lessen emotional and behavioral symptoms of dementia.34, 35”
    Quote in the paperNot a substantial claim0 of 5 sources checked
    • cites [31] Kable, 2015, Health professional perspectives on systems failures in transitional care for patients with dementia and their carers: a qualitative descriptive study, BMC Health Serv Res source

      Not checked in the free run.

    • cites [32] Prusaczyk, 2019, Differences in transitional care provided to patients with and without dementia, J Gerontol Nurs source

      Not checked in the free run.

    • cites [33] Reinhard, 2019

      Not checked in the free run.

    • cites [34] Prizer, 2018, Progressive support for activities of daily living for persons living with dementia, Gerontologist source

      Not checked in the free run.

    • cites [35] Whitlatch, 2018, Meeting the informational, educational, and psychosocial support needs of persons living with dementia and their family caregivers, Gerontologist

      Not checked in the free run.

29 of 29

  • The paper relies on this without support.

    Prior studies have not examined the high risk transitions of people with dementia from skilled nursing facilities to home.

    “Prior studies have not examined the high risk transitions of PWD from SNF to home; thus, this qualitative study described stakeholder perspectives on the care needs of PWD and their caregivers during transitions from SNFs to home.”

  • The paper relies on this without support.

    Little is known about how transitional care prepares caregivers for this role.

    “Little is known about how transitional care prepares caregivers for this role.”

  • The paper relies on this without support.

    Developing transitional care matched to the needs of people with dementia is essential to improving outcomes.

    “Developing transitional care matched to needs of this population is essential to improving outcomes.”
3 of 3

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?

  • 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 [14]

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Related

Authors
Toles, M., Leeman, J., Gwyther, L., Vu, M., Vu, T., & Hanson, L. C.
Affiliations
  • University of North Carolina at Chapel Hill (US)
  • Duke University (US)
  • Yale University (US)
Corresponding author
Toles, Mark
ORCID
Venue
Journal of the American Medical Directors Association
Publisher
Elsevier BV
Published
2022-09
Volume
23
Issue
9
Pages
1486-1491
ISSN
1525-8610 (ISSN-L)
DOI
10.1016/j.jamda.2022.06.021
PMC
PMC9801685
OpenAlex
W4289277832
Semantic Scholar
cf356ed81ea2be43d64b6abda889c514772d1f0b
Cited by
16
References
40
Citations by year
2025: 5 · 2024: 5 · 2023: 4 · 2022: 2
FWCI
4.59
Type
journal article
Language
en
Open access
Licence
Locations
  • Journal of the American Medical Directors Association (publishedVersion)
  • PubMed (publishedVersion)
  • PubMed Central (acceptedVersion)
Funders
  • National Institute of Nursing Research (3R01NR017636-03S1)
  • National Institutes of Health
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 › Medicine › Emergency Medicine › Hospital Admissions and Outcomes
Keywords
dementia, family caregivers, skilled nursing facilities, transition to home, assisted living, care transitions, care planning, caregiver preparedness, community support services, caregiver self-care, home care nursing, community discharge
MeSH terms
Transitional Care, Aged, Dementia, Humans, Skilled Nursing Facilities, Caregivers, Qualitative Research

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