The National Institute on Aging (NIA) has contributed to the remarkable growth in the field of gerontology. One of the many ways the NIA has contributed is through the creation and support of an extensive body of relevant data resources. This paper focuses primarily on NIA's support for the creation and use of these data sources in research, including mention of related documentation, archiving, harmonization, and dissemination/data access activities. Through all of these efforts, NIA-supported data have been used by researchers and policy analysts across a wide range of scholarly disciplines, producing a large body of research that provides a scientific foundation for policy and practice.
{"title":"Building Survey Data Infrastructure on Aging: The Legacy of NIA.","authors":"Emily M Agree, Amanda Sonnega, Douglas A Wolf","doi":"10.1093/geront/gnaf038","DOIUrl":"https://doi.org/10.1093/geront/gnaf038","url":null,"abstract":"<p><p>The National Institute on Aging (NIA) has contributed to the remarkable growth in the field of gerontology. One of the many ways the NIA has contributed is through the creation and support of an extensive body of relevant data resources. This paper focuses primarily on NIA's support for the creation and use of these data sources in research, including mention of related documentation, archiving, harmonization, and dissemination/data access activities. Through all of these efforts, NIA-supported data have been used by researchers and policy analysts across a wide range of scholarly disciplines, producing a large body of research that provides a scientific foundation for policy and practice.</p>","PeriodicalId":51347,"journal":{"name":"Gerontologist","volume":" ","pages":""},"PeriodicalIF":4.6,"publicationDate":"2025-02-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143374808","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Evan Plys, Morgan Seward, Elizabeth M Allen, Raquel G Tatar, Jennifer Huberty, Ana-Maria Vranceanu
Background and objectives: We tested feasibility and preliminary benefits of a free mobile app-delivered mindfulness-based intervention for stress among dementia caregivers (i.e., Healthy Minds Program for Caregivers [HMP-C]).
Research design and methods: Single-blind Stage 1b pilot randomized controlled trial compared 12 weeks of HMP-C (n = 47) with a dose-matched education podcast control (n = 48; Wellness App [WA]). T-tests examined between-group differences.
Results: Feasibility benchmarks were met for acceptability (90% eligible enrolled), demand (95% completed post-tests), and data collection (100% measures complete). Treatment satisfaction was sufficient for HMP-C. Adherence was lower than benchmarks (>52.5 minutes weekly) for HMP-C (57%) and WA (59%). Mechanistic targets of mindfulness (p < .001; d = -1.21) and positive aspects of caregiving (p < .001; d = -0.92) showed large pre-post improvements in the HMP-C group. Mechanistic validity was established through significant correlations between change in stress and change in mindfulness (r =-.40, p =.006) and positive aspects of caregiving (r =-.49, p =.001). Pre-post improvements in HMP-C were not statistically significantly compared with WA for stress (p = .097; d = -0.35), depression (p = .110; d = -0.34), or anxiety (p = .237; d = -0.25).
Discussion and implications: The current study demonstrated feasibility and mechanistic target engagement and validity for HMP-C. As expected in an underpowered feasibility trial, clinical outcomes did not improve more than control, but trends favored HMP-C. Together, findings demonstrate that a fully powered Stage 2 trial is warranted to test the efficacy of HMP-C compared with WA.
{"title":"Pilot Randomized Controlled Trial of the Feasibility of a Mobile App-Delivered Mindfulness-Based Intervention for Caregiver Stress.","authors":"Evan Plys, Morgan Seward, Elizabeth M Allen, Raquel G Tatar, Jennifer Huberty, Ana-Maria Vranceanu","doi":"10.1093/geront/gnaf047","DOIUrl":"https://doi.org/10.1093/geront/gnaf047","url":null,"abstract":"<p><strong>Background and objectives: </strong>We tested feasibility and preliminary benefits of a free mobile app-delivered mindfulness-based intervention for stress among dementia caregivers (i.e., Healthy Minds Program for Caregivers [HMP-C]).</p><p><strong>Research design and methods: </strong>Single-blind Stage 1b pilot randomized controlled trial compared 12 weeks of HMP-C (n = 47) with a dose-matched education podcast control (n = 48; Wellness App [WA]). T-tests examined between-group differences.</p><p><strong>Results: </strong>Feasibility benchmarks were met for acceptability (90% eligible enrolled), demand (95% completed post-tests), and data collection (100% measures complete). Treatment satisfaction was sufficient for HMP-C. Adherence was lower than benchmarks (>52.5 minutes weekly) for HMP-C (57%) and WA (59%). Mechanistic targets of mindfulness (p < .001; d = -1.21) and positive aspects of caregiving (p < .001; d = -0.92) showed large pre-post improvements in the HMP-C group. Mechanistic validity was established through significant correlations between change in stress and change in mindfulness (r =-.40, p =.006) and positive aspects of caregiving (r =-.49, p =.001). Pre-post improvements in HMP-C were not statistically significantly compared with WA for stress (p = .097; d = -0.35), depression (p = .110; d = -0.34), or anxiety (p = .237; d = -0.25).</p><p><strong>Discussion and implications: </strong>The current study demonstrated feasibility and mechanistic target engagement and validity for HMP-C. As expected in an underpowered feasibility trial, clinical outcomes did not improve more than control, but trends favored HMP-C. Together, findings demonstrate that a fully powered Stage 2 trial is warranted to test the efficacy of HMP-C compared with WA.</p>","PeriodicalId":51347,"journal":{"name":"Gerontologist","volume":" ","pages":""},"PeriodicalIF":4.6,"publicationDate":"2025-02-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143374968","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Rebecca Davis, Margaret Calkins, Alla Sikorskii, Jennifer Brush
Background and objectives: Wayfinding can be challenging in many long-term care communities (LTCCs) due to size, poor visibility, inadequate wayfinding design, as well as cognitive impairment of some residents. The purpose of this study was to investigate the effects of distinctive cues and signage placed at key points within care communities, with and without a trained memory strategy called spaced retrieval (SR), on wayfinding ability and life-space.
Research design and methods: Fifteen LTCCs were randomized to control (arm 1), cues (arm 2), or cues+SR (arm 3). Data were collected at baseline, and months 1, 3, 6 and 12. Wayfinding speed and accuracy (co-primary outcomes) were tested on three routes (simple, moderate, and complex) in each site. The secondary outcome was self-reported life-space. Longitudinal linear mixed effects and generalized linear mixed effects models were used to analyze repeated measures of the outcomes in relation to trial arm.
Results: Wayfinding speed was significantly greater on the simple route for the cues condition compared to control. On the moderate and complex routes, there were no differences in speed among trial arms. In terms of errors, participants in cues and cues+SR conditions performed significantly better than control participants, and arm cues+SR performed better than cues alone. There were no differences in life-space among arms.
Discussion and implications: The addition of age-friendly signs and art cues assisted residents of LTCCs to find their way more effectively than no intervention, and there were fewer errors with spaced retrieval.
{"title":"A Cluster Randomized Controlled Trial of Visual Cues, Signage, and Spaced-Retrieval for Wayfinding within Long-Term Care Communities.","authors":"Rebecca Davis, Margaret Calkins, Alla Sikorskii, Jennifer Brush","doi":"10.1093/geront/gnaf052","DOIUrl":"https://doi.org/10.1093/geront/gnaf052","url":null,"abstract":"<p><strong>Background and objectives: </strong>Wayfinding can be challenging in many long-term care communities (LTCCs) due to size, poor visibility, inadequate wayfinding design, as well as cognitive impairment of some residents. The purpose of this study was to investigate the effects of distinctive cues and signage placed at key points within care communities, with and without a trained memory strategy called spaced retrieval (SR), on wayfinding ability and life-space.</p><p><strong>Research design and methods: </strong>Fifteen LTCCs were randomized to control (arm 1), cues (arm 2), or cues+SR (arm 3). Data were collected at baseline, and months 1, 3, 6 and 12. Wayfinding speed and accuracy (co-primary outcomes) were tested on three routes (simple, moderate, and complex) in each site. The secondary outcome was self-reported life-space. Longitudinal linear mixed effects and generalized linear mixed effects models were used to analyze repeated measures of the outcomes in relation to trial arm.</p><p><strong>Results: </strong>Wayfinding speed was significantly greater on the simple route for the cues condition compared to control. On the moderate and complex routes, there were no differences in speed among trial arms. In terms of errors, participants in cues and cues+SR conditions performed significantly better than control participants, and arm cues+SR performed better than cues alone. There were no differences in life-space among arms.</p><p><strong>Discussion and implications: </strong>The addition of age-friendly signs and art cues assisted residents of LTCCs to find their way more effectively than no intervention, and there were fewer errors with spaced retrieval.</p>","PeriodicalId":51347,"journal":{"name":"Gerontologist","volume":" ","pages":""},"PeriodicalIF":4.6,"publicationDate":"2025-02-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143366700","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Background and objectives: Just as the U.S. population is aging and racially diversifying, housing prices are spiking. These conditions could spur a homelessness crisis among older adults of color. Although researchers have examined racial stratification and age-based differences in homelessness risk, separately, few studies probe whether age and race interact to render older adults of color more vulnerable to repeated episodes of homelessness than younger adults and older White adults. Fewer still have considered whether and why "Housing First" interventions (e.g., rapid rehousing/RRH, permanent supportive housing/PSH) are disproportionately effective- or ineffective- in reducing this risk for older adults of color.
Research design and methods: Using individual-level data from Los Angeles County's Homelessness Management Information System, tracking Continuum of Care (CoC) services received between 2013 and 2019, we show how race and age jointly shape the risk of receiving additional CoC homelessness services after an initial CoC service. Linear probability models reveal whether PSH and RRH disproportionately reduce this risk for Black versus White older adults.
Results: Our analyses indicate an age-race interaction, whereby Black adults aged 55-64 exhibit the highest risk of receiving additional CoC homelessness services after an initial service. PSH disproportionately reduces this risk for Black older adults.
Discussion and implications: We conclude that "Housing First" interventions may hold particular promise for older adults of color, perhaps because these groups sort into more effective programs, on average. Future research on aging and housing should highlight heterogeneity and consider program sorting processes as a potential explanation for it.
{"title":"Assessing Racial Heterogeneity in \"Housing First\" Supports' Effectiveness among Older Adults Experiencing Homelessness: Evidence from Los Angeles County.","authors":"Jared N Schachner, Steven Schmidt, Gary D Painter","doi":"10.1093/geront/gnaf050","DOIUrl":"https://doi.org/10.1093/geront/gnaf050","url":null,"abstract":"<p><strong>Background and objectives: </strong>Just as the U.S. population is aging and racially diversifying, housing prices are spiking. These conditions could spur a homelessness crisis among older adults of color. Although researchers have examined racial stratification and age-based differences in homelessness risk, separately, few studies probe whether age and race interact to render older adults of color more vulnerable to repeated episodes of homelessness than younger adults and older White adults. Fewer still have considered whether and why \"Housing First\" interventions (e.g., rapid rehousing/RRH, permanent supportive housing/PSH) are disproportionately effective- or ineffective- in reducing this risk for older adults of color.</p><p><strong>Research design and methods: </strong>Using individual-level data from Los Angeles County's Homelessness Management Information System, tracking Continuum of Care (CoC) services received between 2013 and 2019, we show how race and age jointly shape the risk of receiving additional CoC homelessness services after an initial CoC service. Linear probability models reveal whether PSH and RRH disproportionately reduce this risk for Black versus White older adults.</p><p><strong>Results: </strong>Our analyses indicate an age-race interaction, whereby Black adults aged 55-64 exhibit the highest risk of receiving additional CoC homelessness services after an initial service. PSH disproportionately reduces this risk for Black older adults.</p><p><strong>Discussion and implications: </strong>We conclude that \"Housing First\" interventions may hold particular promise for older adults of color, perhaps because these groups sort into more effective programs, on average. Future research on aging and housing should highlight heterogeneity and consider program sorting processes as a potential explanation for it.</p>","PeriodicalId":51347,"journal":{"name":"Gerontologist","volume":" ","pages":""},"PeriodicalIF":4.6,"publicationDate":"2025-02-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143366713","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Background and objectives: Being or becoming disabled over the life course can have profound effects on one's financial well-being and health-related quality of life. Adults of different ages and abilities who need long-term services and supports (LTSS) may perceive and experience financial strain and its impact on their health and well-being differently. Yet research on LTSS has typically studied defined age groups separately. This study explores how age may differentiate the associations between disability status, financial strain, and the subjective health and well-being of adults with LTSS needs in California.
Research design and methods: Using representative population-level data from the 2019-2020 California Long-Term Services and Supports survey, merged with data from the California Health Interview Survey (N = 2,030), descriptive and conditional process analyses were applied to answer the primary research questions.
Results: Findings indicate that young and middle-aged adults with LTSS needs struggled more than older adults to make financial ends meet. Middle-aged and older adults reported worse self-rated health, while younger adults were more likely to experience serious psychological distress. The indirect effects of difficulty in performing instrumental activities of daily living and the experience of serious psychological distress through financial strain were significant for young and middle-aged adults but not significant for older adults.
Discussion and implications: These findings suggest the need to calibrate services to be more responsive to diverse experiences of disability, and to reset aging and disability silos to create coordinated LTSS networks for people with disabilities of all ages.
{"title":"How Does Age Matter? Investigating Financial Strain, Health, and Well-Being among Adults Who Need Long-Term Services and Supports.","authors":"Lei Chen, Kathryn Kietzman","doi":"10.1093/geront/gnaf051","DOIUrl":"https://doi.org/10.1093/geront/gnaf051","url":null,"abstract":"<p><strong>Background and objectives: </strong>Being or becoming disabled over the life course can have profound effects on one's financial well-being and health-related quality of life. Adults of different ages and abilities who need long-term services and supports (LTSS) may perceive and experience financial strain and its impact on their health and well-being differently. Yet research on LTSS has typically studied defined age groups separately. This study explores how age may differentiate the associations between disability status, financial strain, and the subjective health and well-being of adults with LTSS needs in California.</p><p><strong>Research design and methods: </strong>Using representative population-level data from the 2019-2020 California Long-Term Services and Supports survey, merged with data from the California Health Interview Survey (N = 2,030), descriptive and conditional process analyses were applied to answer the primary research questions.</p><p><strong>Results: </strong>Findings indicate that young and middle-aged adults with LTSS needs struggled more than older adults to make financial ends meet. Middle-aged and older adults reported worse self-rated health, while younger adults were more likely to experience serious psychological distress. The indirect effects of difficulty in performing instrumental activities of daily living and the experience of serious psychological distress through financial strain were significant for young and middle-aged adults but not significant for older adults.</p><p><strong>Discussion and implications: </strong>These findings suggest the need to calibrate services to be more responsive to diverse experiences of disability, and to reset aging and disability silos to create coordinated LTSS networks for people with disabilities of all ages.</p>","PeriodicalId":51347,"journal":{"name":"Gerontologist","volume":" ","pages":""},"PeriodicalIF":4.6,"publicationDate":"2025-02-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143256479","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Christine L Shepard, Seong-Gee Um, Brenda Roche, Sarah Gould, Andrea Austen, Sander L Hitzig
Background and objectives: Evictions are a major contributor to homelessness among low-income older renters, many of whom are living in social housing. Research indicates that social housing may protect individuals from eviction, but older adults may still be vulnerable, especially for non-payment of rent. This research used a qualitative approach to understand the factors that place older adults in social housing at risk of eviction and identify strategies to promote housing stability.
Research design and methods: Participants included older adult tenants in social housing in Toronto, Canada (n=58) as well as community-based health and social service providers (n=58) that operate in the buildings. Semi-structured interviews and focus groups explored (a) experiences with eviction; (b) challenges tenants face managing their tenancy; and (c) supports tenants need to maintain their housing.
Results: Most service providers had experiences supporting a tenant under threat of eviction. Tenants similarly had experiences with the eviction process, ranging from being threatened with a future eviction to receiving eviction notices and attending hearings with the landlord and tenant board. To understand experiences with evictions and opportunities to strengthen eviction prevention practices, we generated the following themes: (a) creating fear and mistrust through evictions; (b) identifying the underlying cause of an eviction; (c) ineffective tenancy management practices; and (d) proactive community supports.
Discussion and implications: Current eviction prevention strategies were viewed as inadequate, and findings highlighted the need to transform supports to better meet the needs of low-income older tenants. This includes more proactive and "senior friendly" approaches and increased access to community support services to promote housing stability.
{"title":"Promoting Housing Stability through Eviction Prevention for Older Adults in Social Housing: A Qualitative Study.","authors":"Christine L Shepard, Seong-Gee Um, Brenda Roche, Sarah Gould, Andrea Austen, Sander L Hitzig","doi":"10.1093/geront/gnaf049","DOIUrl":"https://doi.org/10.1093/geront/gnaf049","url":null,"abstract":"<p><strong>Background and objectives: </strong>Evictions are a major contributor to homelessness among low-income older renters, many of whom are living in social housing. Research indicates that social housing may protect individuals from eviction, but older adults may still be vulnerable, especially for non-payment of rent. This research used a qualitative approach to understand the factors that place older adults in social housing at risk of eviction and identify strategies to promote housing stability.</p><p><strong>Research design and methods: </strong>Participants included older adult tenants in social housing in Toronto, Canada (n=58) as well as community-based health and social service providers (n=58) that operate in the buildings. Semi-structured interviews and focus groups explored (a) experiences with eviction; (b) challenges tenants face managing their tenancy; and (c) supports tenants need to maintain their housing.</p><p><strong>Results: </strong>Most service providers had experiences supporting a tenant under threat of eviction. Tenants similarly had experiences with the eviction process, ranging from being threatened with a future eviction to receiving eviction notices and attending hearings with the landlord and tenant board. To understand experiences with evictions and opportunities to strengthen eviction prevention practices, we generated the following themes: (a) creating fear and mistrust through evictions; (b) identifying the underlying cause of an eviction; (c) ineffective tenancy management practices; and (d) proactive community supports.</p><p><strong>Discussion and implications: </strong>Current eviction prevention strategies were viewed as inadequate, and findings highlighted the need to transform supports to better meet the needs of low-income older tenants. This includes more proactive and \"senior friendly\" approaches and increased access to community support services to promote housing stability.</p>","PeriodicalId":51347,"journal":{"name":"Gerontologist","volume":" ","pages":""},"PeriodicalIF":4.6,"publicationDate":"2025-02-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143256684","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Casey K Brown, Marcela C Otero, Elizabeth A Ascher, Jennifer Merrilees, Robert W Levenson
Background and objectives: Care recipients with neurodegenerative disease can have socioemotional impairments that are challenging for their caregivers. We examine the concurrent and incremental validity of a novel informant-rated measure of care recipient functioning, the Caregiver Assessment of Socioemotional Functioning (CASEF), by examining links with clinician-rated behavioral problems, neuropsychiatric symptoms, and disease severity, as well as caregivers' reported burden and relationship quality. We also examine test-retest reliability of the CASEF.
Research design and methods: Informal caregivers (N=177) of individuals with neurodegenerative disease reported on their care recipients' socioemotional functioning and completed structured interviews with clinicians to assess care recipients' disease severity and neuropsychiatric symptoms. Care recipients' behavioral symptoms were evaluated with clinician rating scales. Another sample of caregivers (N=61) repeated the CASEF four to six months following an initial administration.
Results: CASEF subscales evidenced concurrent validity with other measures of care recipients' socioemotional functioning, disease severity, neuropsychiatric symptoms, and behavioral symptoms. CASEF subscales also evidenced incremental validity by accounting for significant additional variance in caregiver burden and relationship quality after accounting for care recipients' neuropsychiatric and behavioral symptoms. Finally, CASEF subscales demonstrated adequate to excellent test-retest reliability.
Discussion and implications: Findings highlight the validity and reliability of the CASEF. Coupled with findings from Part 1 of this series (which established CASEF's construct validity), these findings support using the CASEF in clinical and research settings to assess changes in care recipient socioemotional functioning over time and to examine links between care recipient socioemotional changes and caregiver burden, health, and well-being.
{"title":"Caregiver assessment of socioemotional functioning in people living with neurodegenerative disease (Part 2): Concurrent validity and test-retest reliability of a new measure.","authors":"Casey K Brown, Marcela C Otero, Elizabeth A Ascher, Jennifer Merrilees, Robert W Levenson","doi":"10.1093/geront/gnaf044","DOIUrl":"https://doi.org/10.1093/geront/gnaf044","url":null,"abstract":"<p><strong>Background and objectives: </strong>Care recipients with neurodegenerative disease can have socioemotional impairments that are challenging for their caregivers. We examine the concurrent and incremental validity of a novel informant-rated measure of care recipient functioning, the Caregiver Assessment of Socioemotional Functioning (CASEF), by examining links with clinician-rated behavioral problems, neuropsychiatric symptoms, and disease severity, as well as caregivers' reported burden and relationship quality. We also examine test-retest reliability of the CASEF.</p><p><strong>Research design and methods: </strong>Informal caregivers (N=177) of individuals with neurodegenerative disease reported on their care recipients' socioemotional functioning and completed structured interviews with clinicians to assess care recipients' disease severity and neuropsychiatric symptoms. Care recipients' behavioral symptoms were evaluated with clinician rating scales. Another sample of caregivers (N=61) repeated the CASEF four to six months following an initial administration.</p><p><strong>Results: </strong>CASEF subscales evidenced concurrent validity with other measures of care recipients' socioemotional functioning, disease severity, neuropsychiatric symptoms, and behavioral symptoms. CASEF subscales also evidenced incremental validity by accounting for significant additional variance in caregiver burden and relationship quality after accounting for care recipients' neuropsychiatric and behavioral symptoms. Finally, CASEF subscales demonstrated adequate to excellent test-retest reliability.</p><p><strong>Discussion and implications: </strong>Findings highlight the validity and reliability of the CASEF. Coupled with findings from Part 1 of this series (which established CASEF's construct validity), these findings support using the CASEF in clinical and research settings to assess changes in care recipient socioemotional functioning over time and to examine links between care recipient socioemotional changes and caregiver burden, health, and well-being.</p>","PeriodicalId":51347,"journal":{"name":"Gerontologist","volume":" ","pages":""},"PeriodicalIF":4.6,"publicationDate":"2025-02-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143191366","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Molly J Wylie, Jane Tavares, Susan Silberman, Kerry Glova, Maryssa Pallis, Marc A Cohen
Background and objectives: Chronic health conditions affect the physical and financial well-being of millions of older adults, including those who themselves provide care to relatives and friends. As well, certain conditions cost more than others to manage, and older caregivers may be especially at risk of experiencing financial burden from an illness. This study investigated the association between caregiving and longitudinal change in health cost burden by measuring condition-specific expenses in a nationally-representative sample of older caregivers and non-caregivers.
Research design and methods: Three waves of the Health and Retirement Study (HRS) were used in the analysis. Caregiver socio-demographic and financial status was matched with updated treatment and lost-wage costs for chronic conditions developed by the Milken Institute. Profiles of health cost burden were created for community-dwelling adults 60 years and older who completed the HRS core survey for all three wave years from 2016 through 2020 (N = 10,540). Bivariate and regression analyses were used to examine differences in health cost burden between caregivers and non-caregivers over time.
Results: Compared to non-caregivers, caregivers were healthier and less burdened at baseline. Yet, holding other variables constant, caregivers showed steeper increases in chronic condition prevalence and costs over a four-year period after initiating caregiving activities.
Discussion and implications: Findings suggest that whereas older caregivers may appear to select into the caregiving role while healthier, they are more likely to experience increased economic and health burdens over time - both from medical treatment and lost wages - related to chronic conditions.
{"title":"Chronic Health Cost Burden in Older Caregivers and non-Caregivers in the United States.","authors":"Molly J Wylie, Jane Tavares, Susan Silberman, Kerry Glova, Maryssa Pallis, Marc A Cohen","doi":"10.1093/geront/gnaf011","DOIUrl":"https://doi.org/10.1093/geront/gnaf011","url":null,"abstract":"<p><strong>Background and objectives: </strong>Chronic health conditions affect the physical and financial well-being of millions of older adults, including those who themselves provide care to relatives and friends. As well, certain conditions cost more than others to manage, and older caregivers may be especially at risk of experiencing financial burden from an illness. This study investigated the association between caregiving and longitudinal change in health cost burden by measuring condition-specific expenses in a nationally-representative sample of older caregivers and non-caregivers.</p><p><strong>Research design and methods: </strong>Three waves of the Health and Retirement Study (HRS) were used in the analysis. Caregiver socio-demographic and financial status was matched with updated treatment and lost-wage costs for chronic conditions developed by the Milken Institute. Profiles of health cost burden were created for community-dwelling adults 60 years and older who completed the HRS core survey for all three wave years from 2016 through 2020 (N = 10,540). Bivariate and regression analyses were used to examine differences in health cost burden between caregivers and non-caregivers over time.</p><p><strong>Results: </strong>Compared to non-caregivers, caregivers were healthier and less burdened at baseline. Yet, holding other variables constant, caregivers showed steeper increases in chronic condition prevalence and costs over a four-year period after initiating caregiving activities.</p><p><strong>Discussion and implications: </strong>Findings suggest that whereas older caregivers may appear to select into the caregiving role while healthier, they are more likely to experience increased economic and health burdens over time - both from medical treatment and lost wages - related to chronic conditions.</p>","PeriodicalId":51347,"journal":{"name":"Gerontologist","volume":" ","pages":""},"PeriodicalIF":4.6,"publicationDate":"2025-02-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143191367","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Komal Patel Murali, Srija Gogineni, Karen Bullock, Margaret McDonald, Tina Sadarangani, Dena Schulman-Green, Abraham A Brody
Background and objectives: Goal-concordant transition to hospice is an important facet of end-of-life care for people living with dementia. The objective of this integrative review was to appraise existing evidence and gaps focused on interventions and predictors of transition to hospice and end-of-life care for persons living with dementia across healthcare to inform future research.
Research design and methods: Using integrative review methodology by Whittemore and Knafl, five databases were searched (PubMed, CINAHL, Web of Science, Google Scholar, Cochrane Database for Systematic Reviews) for articles between 2000 and 2023. The search focused on dementia, hospice care, transitions, care management and/or coordination, and intervention studies.
Results: Fourteen articles met inclusion criteria after critical appraisal. Most were cross-sectional in design and conducted in nursing homes and hospitals in the U.S. persons living with dementia had multiple chronic conditions including cancer, diabetes, heart disease, and stroke. Interventions included components of hospice decision-making delivered through advance care planning, checklist-based care management for hospice transition, and palliative care for those with severe dementia. Predictors included increasing severity of illness including functional decline, organ failure, intensive care use, and the receipt of palliative care. Other predictors were related to insurance status, race and ethnicity, and caregiver burden. Overall, despite moderate to high-quality evidence, the studies were limited in scope and sample and lacked racial and ethnic diversity.
Discussion and implications: Prospective, multisite randomized trials and population-based analyses including larger and diverse samples are needed for improved end-of-life dementia illness counseling and hospice care transitions for persons living with dementia and their caregivers.
背景和目的:目标一致的临终关怀过渡是痴呆症患者临终关怀的一个重要方面。本综合综述的目的是评估现有证据和差距,重点关注向临终关怀过渡的干预措施和预测因素,以及痴呆症患者在医疗保健领域的临终关怀,为未来研究提供参考:采用Whittemore和Knafl的综合综述方法,在五个数据库(PubMed、CINAHL、Web of Science、Google Scholar、Cochrane系统综述数据库)中检索了2000年至2023年间的文章。检索的重点是痴呆症、安宁疗护、过渡、护理管理和/或协调以及干预研究:经过严格评审,14 篇文章符合纳入标准。大多数文章为横断面设计,在美国的疗养院和医院进行,痴呆症患者患有多种慢性疾病,包括癌症、糖尿病、心脏病和中风。干预措施包括通过预先护理计划提供的临终关怀决策、基于检查表的临终关怀过渡护理管理以及针对严重痴呆症患者的姑息治疗。预测因素包括日益严重的疾病,包括功能衰退、器官衰竭、使用重症监护以及接受姑息治疗。其他预测因素与保险状况、种族和民族以及照顾者的负担有关。总体而言,尽管有中等至高质量的证据,但这些研究的范围和样本有限,且缺乏种族和民族多样性:讨论与启示:需要进行前瞻性、多地点随机试验和基于人群的分析,包括更大规模和多样化的样本,以改善痴呆症患者及其照顾者的临终痴呆症疾病咨询和安宁疗护过渡。
{"title":"Interventions and Predictors of Transition to Hospice for People Living with Dementia: An Integrative Review.","authors":"Komal Patel Murali, Srija Gogineni, Karen Bullock, Margaret McDonald, Tina Sadarangani, Dena Schulman-Green, Abraham A Brody","doi":"10.1093/geront/gnaf046","DOIUrl":"10.1093/geront/gnaf046","url":null,"abstract":"<p><strong>Background and objectives: </strong>Goal-concordant transition to hospice is an important facet of end-of-life care for people living with dementia. The objective of this integrative review was to appraise existing evidence and gaps focused on interventions and predictors of transition to hospice and end-of-life care for persons living with dementia across healthcare to inform future research.</p><p><strong>Research design and methods: </strong>Using integrative review methodology by Whittemore and Knafl, five databases were searched (PubMed, CINAHL, Web of Science, Google Scholar, Cochrane Database for Systematic Reviews) for articles between 2000 and 2023. The search focused on dementia, hospice care, transitions, care management and/or coordination, and intervention studies.</p><p><strong>Results: </strong>Fourteen articles met inclusion criteria after critical appraisal. Most were cross-sectional in design and conducted in nursing homes and hospitals in the U.S. persons living with dementia had multiple chronic conditions including cancer, diabetes, heart disease, and stroke. Interventions included components of hospice decision-making delivered through advance care planning, checklist-based care management for hospice transition, and palliative care for those with severe dementia. Predictors included increasing severity of illness including functional decline, organ failure, intensive care use, and the receipt of palliative care. Other predictors were related to insurance status, race and ethnicity, and caregiver burden. Overall, despite moderate to high-quality evidence, the studies were limited in scope and sample and lacked racial and ethnic diversity.</p><p><strong>Discussion and implications: </strong>Prospective, multisite randomized trials and population-based analyses including larger and diverse samples are needed for improved end-of-life dementia illness counseling and hospice care transitions for persons living with dementia and their caregivers.</p>","PeriodicalId":51347,"journal":{"name":"Gerontologist","volume":" ","pages":""},"PeriodicalIF":4.6,"publicationDate":"2025-02-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143190312","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Sarah McMullen-Roach, Saravana Kumar, Maria Inacio, Carolyn Murray
Background and objectives: LGBTI+ older adults have experienced historical and systemic discrimination. Such discrimination has led to health inequities and avoidance of services. As LGBTI+ people age, they may need to access services, but information about this experience is situated in small scale qualitative studies. As such this, meta-synthesis aimed to bring together the perspectives and experiences of LGBTI+ older adults in literature about engagement with long-term care services.
Research design and methods: A meta-synthesis with a meta-ethnographic approach was conducted with qualitative published and grey literature. Findings were then confirmed through community consultation conducted with LGBTI+ adults aged 50.
Results: A total of 55 qualitative studies were included in the meta synthesis. LGBTI+ older adults' perspectives and experiences were synthesised into 4 key themes: 1) We see it as being heterosexualised, 2) With no-one there to guard us, 3) You have to hide 90% of yourself, 4) I don't want a different service, I want a good service.
Discussion and implications: Overarching heterosexism, experiences of discrimination, and complexities in maintaining identity all contributed to a predominately negative experience for LGBTI+ adults when engaging with long-term care. These experiences were found to align with 'minority stress' theory. Our review found a multilevel approach that included staff education, LGBTI+ affirmative care and signs and symbols of inclusivity was required to reduce the impact of minority stress experienced by LGBTI+ older adults and increased their engagement in long-term care services.
{"title":"The perspectives and experiences of older LGBTI+ adults about long-term care: A qualitative systematic review and meta-synthesis.","authors":"Sarah McMullen-Roach, Saravana Kumar, Maria Inacio, Carolyn Murray","doi":"10.1093/geront/gnaf048","DOIUrl":"https://doi.org/10.1093/geront/gnaf048","url":null,"abstract":"<p><strong>Background and objectives: </strong>LGBTI+ older adults have experienced historical and systemic discrimination. Such discrimination has led to health inequities and avoidance of services. As LGBTI+ people age, they may need to access services, but information about this experience is situated in small scale qualitative studies. As such this, meta-synthesis aimed to bring together the perspectives and experiences of LGBTI+ older adults in literature about engagement with long-term care services.</p><p><strong>Research design and methods: </strong>A meta-synthesis with a meta-ethnographic approach was conducted with qualitative published and grey literature. Findings were then confirmed through community consultation conducted with LGBTI+ adults aged 50.</p><p><strong>Results: </strong>A total of 55 qualitative studies were included in the meta synthesis. LGBTI+ older adults' perspectives and experiences were synthesised into 4 key themes: 1) We see it as being heterosexualised, 2) With no-one there to guard us, 3) You have to hide 90% of yourself, 4) I don't want a different service, I want a good service.</p><p><strong>Discussion and implications: </strong>Overarching heterosexism, experiences of discrimination, and complexities in maintaining identity all contributed to a predominately negative experience for LGBTI+ adults when engaging with long-term care. These experiences were found to align with 'minority stress' theory. Our review found a multilevel approach that included staff education, LGBTI+ affirmative care and signs and symbols of inclusivity was required to reduce the impact of minority stress experienced by LGBTI+ older adults and increased their engagement in long-term care services.</p>","PeriodicalId":51347,"journal":{"name":"Gerontologist","volume":" ","pages":""},"PeriodicalIF":4.6,"publicationDate":"2025-02-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143190460","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}