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Unmet Needs of Community‐Residing Persons with Dementia and Their Informal Caregivers: Findings from the Maximizing Independence at Home Study
Open accessAbstract
Objectives: To determine the prevalence and correlates of unmet needs in a sample of community‐residing persons with dementia ( PWD ) and their informal caregivers. Design: Analysis of cross‐sectional, baseline participant characteristics before randomization in a care coordination intervention trial. Setting: Baltimore, Maryland. Participants: Community‐residing PWD (n = 254) and their informal caregivers (n = 246). Measurements: In‐home assessments of dementia‐related needs based on the Johns Hopkins Dementia Care Needs Assessment. Bivariate and multivariate regression analyses were conducted to identify demographic, socioeconomic, clinical, functional, and quality‐of‐life correlates of unmet needs. Results: The mean number of unmet needs was 7.7 ± 4.8 in PWD and 4.6 ± 2.3 in caregivers, with almost all PWD (99%) and caregivers (97%) having one or more unmet needs. Unmet needs in PWD were significantly greater in those with higher cognitive function. Ninety percent of PWD had unmet safety needs, more than half had unmet needs for meaningful activities, and almost one‐third had not received a prior evaluation or diagnosis. Higher unmet needs in PWD was significantly associated with nonwhite race, lower income, less impairment in activities of daily living, and more symptoms of depression. For caregivers, more than 85% had unmet needs for resource referrals and caregiver education. Higher unmet caregiver needs was significantly associated with nonwhite race, less education, and more symptoms of depression. Conclusion: Many community‐residing PWD and their caregivers have unmet dementia‐related needs for care, services, and support. Providers should be aware that unmet needs may be higher in minority and low‐income community residents, caregivers with lower education, and individuals with early‐stage dementia. Identifying and treating symptoms of depression in PWD and caregivers may enable them to address their other unmet needs.
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“Furthermore, unmet needs may contribute to a higher likelihood of institutionalization, placing additional strain on both healthcare systems and family caregivers [5, 6].”
From Unmet Needs in Dementia Care: The Predictive Role of Caregiver Challenges (2025) · cites this paper as [5]
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“More severe neuropsychiatric symptoms predicting more unmet needs have been extensively reported [5, 29].”
From Unmet Needs in Dementia Care: The Predictive Role of Caregiver Challenges (2025) · cites this paper as [5]
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“To assess the need for care, we used the translated and adapted Brazilian Portuguese version [15] of the Johns Hopkins Dementia Care Needs Assessment (JHDCNA, 2.0) [5, 6].”
From Unmet Needs in Dementia Care: The Predictive Role of Caregiver Challenges (2025) · cites this paper as [5]
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Gaps in the System: Supporting People Living with Dementia
King, M., Peckham, A., Marani, H., Roerig, M., Yung, S., McGrail, K. M., Young, Y., Shaw, J., & Marchildon, G. P. (2023) · Journal of Aging & Social Policy · doi:10.1080/08959420.2023.2226341 · Cited by 21
“…et al., 2019), organizational-level efforts (Tanner et al., 2015) and specific programs that aim to provide coordinated and person-centered support for people living with ADRD and their caregivers (Black et al., 2013; Lemieux-Charles et al., 2005), these programs and supports vary by jurisdiction.”
Gitlin, L. N., Bouranis, N., Kern, V. J., Koeuth, S., Marx, K., McClure, L. A., Lyketsos, C. G., & Kales, H. C. (2021) · Journal of Technology in Behavioral Science · doi:10.1007/s41347-021-00204-8 · Cited by 22
Self-citationWang, A. H., Newman, K., Martin, L. S., & Lapum, J. L. (2022) · Dementia · doi:10.1177/14713012211073440 · Cited by 22
“Unsurprisingly, much of the literature found that the most common unmet need reported was in the domain of safety (Black et al., 2013) and technology was most commonly used to address safety and security issues among this population (Sriram et al., 2019).”
BackgroundCastillo, L. I. R., Tran, V., & Hadjistavropoulos, T. (2023) · Aging & Mental Health · doi:10.1080/13607863.2023.2177832 · Cited by 19
“The expressed need for support relating to caregivers’ mental health is not surprising as this is the most frequently cited need of caregivers (e.g. Queluz et al., 2020; McCabe et al., 2016; Black et al., 2013).”
BackgroundKerkhof, Y. J. F., Kohl, G., Veijer, M., Mangiaracina, F., Bergsma, A., Graff, M. J. L., & Dröes, R. (2020) · Disability and Rehabilitation Assistive Technology · doi:10.1080/17483107.2020.1765420 · Cited by 19
“Community-dwelling people with dementia and their informal carers report a lack of meaningful activities [6 – 9] and a lack of support to successfully self-manage their condition, especially in the early stages [10].”
Leggett, A. N., Bugajski, B., Gitlin, L. N., & Kales, H. C. (2021) · Dementia · doi:10.1177/1471301220988233 · Cited by 18
Janssen, N., Handels, R. L. H., Köhler, S., Gonçalves‐Pereira, M., Marques, M. J., Irving, K., Hopper, L., Bieber, A., Orrell, M. W., Selbæk, G., et al. (2020) · Journal of the American Medical Directors Association · doi:10.1016/j.jamda.2020.05.009 · Cited by 20
Kleinke, F., Michalowsky, B., Rädke, A., Platen, M., Mühlichen, F., Scharf, A., Mohr, W., Penndorf, P., Bahls, T., van den Berg, N., et al. (2022) · Trials · doi:10.1186/s13063-022-06249-1 · Cited by 17
Schultz, S. K., Llorente, M. D., Sanders, A. E., Tai, W. A., Bennett, A., Shugarman, S. A., & Roca, R. P. (2020) · American Journal of Psychiatry · doi:10.1176/appi.ajp.2019.19121290 · Cited by 17
Jeyagurunathan, A., Yuan, Q., Samari, E., Zhang, Y., Goveas, R. R., Ng, L. L., & Subramaniam, M. (2024) · Frontiers in Public Health · doi:10.3389/fpubh.2024.1396056 · Cited by 16
Bouldin, E. D., Taylor, C. A., Knapp, K. A., Miyawaki, C. E., Mercado, N. R., Wooten, K. G., & McGuire, L. C. (2020) · International Psychogeriatrics · doi:10.1017/s1041610220001635 · Cited by 16
A Longitudinal Study of Functional Unmet Need Among People with Dementia
Read, S., Hu, B., Wittenberg, R., Brimblecombe, N., Robinson, L. A., & Banerjee, S. (2021) · Journal of Alzheimer s Disease · doi:10.3233/jad-210724 · Cited by 16
“For instance, the ELSA data does not permit assessment of some dimensions of unmet needs examined in previous studies, such as unmet needs for medical care [30], counselling, social integration, dementia diagnosis and treatment [6], or psychological or behavioral factors [31, 32].”
InfluentialGiebel, C. M., Talbot, C. V., Wharton, E., Lorenz‐Dant, K., Gonzalez, A. S., Cannon, J., Tetlow, H., Lion, K., & Thyrian, J. R. (2022) · Aging & Mental Health · doi:10.1080/13607863.2022.2084510 · Cited by 16
“Growing evidence has highlighted the myriad of unmet needs experienced by unpaid dementia carers (Black et al., 2013; Janssen et al., 2019; Zwingmann et al., 2019) – Zwingmann et al.”
BackgroundPickett, A. C., Valdez, D., Sinclair, K. L., Kochell, W. J., Fowler, B., & Werner, N. E. (2024) · JMIR Aging · doi:10.2196/59294 · Cited by 16
“Finally, discussions with the forum also often related to difficult decisions facing caregivers of people living with dementia [4,49].”
BackgroundClinical Outcomes and Cost-Effectiveness of Collaborative Dementia Care
Michalowsky, B., Blotenberg, I., Platen, M., Teipel, S. J., Kilimann, I., Portacolone, E., Bohlken, J., Rädke, A., Buchholz, M., Scharf, A., et al. (2024) · JAMA Network Open · doi:10.1001/jamanetworkopen.2024.19282 · Cited by 16
House Calls: The Impact of Home-Based Care for Older Adults With Alzheimer’s and Dementia
Wilson, K., & Bachman, S. S. (2015) · Social Work in Health Care · doi:10.1080/00981389.2015.1045576 · Cited by 17
“However, almost all individuals with dementia living at home (and their caregivers) report at least one unmet need (Black et al., 2013).”
BackgroundInfluentialZhou, Y., Slachevsky, A., & Calvo, E. (2018) · International Journal of Geriatric Psychiatry · doi:10.1002/gps.4879 · Cited by 16
“Studies in the United States and United Kingdom have considered additional factors, such as medical treatment for other illnesses, well‐coordinated postdiagnostic support, and psychological distress.(11,17) Future studies could address these areas and others such as safety, social interactions, satisfaction with assis…”
BackgroundReliability, validity and relevance of needs assessment instruments for informal dementia caregivers
Kipfer, S., & Pihet, S. (2019) · The JBI Database of Systematic Reviews and Implementation Reports · doi:10.11124/jbisrir-2017-003976 · Cited by 14
Diagnosis and management of dementia in family practice
Wilcock, J., Jain, P. N., Griffin, M., Thuné‐Boyle, I., Lefford, F., Rapp, D., & Iliffe, S. (2015) · Aging & Mental Health · doi:10.1080/13607863.2015.1011082 · Cited by 15
“In one study caregivers of people with dementia reported 85% of their needs for resources and education as unmet (Black et al., 2013).”
BackgroundLongstreth, M. E., McKibbin, C. L., Steinman, B. A., Worth, A. S., & Carrico, C. P. (2020) · Clinical Gerontologist · doi:10.1080/07317115.2019.1710735 · Cited by 15
“While these challenges have been shown across studies in urban settings (Black et al., 2013; Edelman et al., 2006; Whitlatch & Orsulic-Jeras, 2018), it is important to note that identified barriers to resources may be compounded for individuals who live and provide care in rural settings.”
BackgroundMoholt, J.-M., Friborg, O., Henriksen, N. O., Hamran, T., & Blix, B. H. (2020) · Ageing and Society · doi:10.1017/s0144686x2000015x · Cited by 15
“At the same time, several studies have disclosed substantial unmet care needs among persons with dementia and/or their family care-givers (van der Roest et al., 2009; Black et al., 2013; Kerpershoek et al., 2017).”
BackgroundPredictors of Perceived Social Support for Patients with Dementia: A Mixed-Methods Study
Yang, S., Zhang, Y., Xie, S., Chen, Y., Jiang, D., Luo, Y., Zhao, Q., & Yang, B. (2020) · Clinical Interventions in Aging · doi:10.2147/cia.s249223 · Cited by 17
Care Needs of Community-Residing Male Patients with Vascular Cognitive Impairment
Jhang, K.-M., Wang, W., Chang, H.-F., Liu, Y.-H., Chang, M., & Wu, H. (2020) · Neuropsychiatric Disease and Treatment · doi:10.2147/ndt.s277303 · Cited by 15
Disparities in Preventable Hospitalization Among Patients With Alzheimer Diseases
Chen, J., Benjenk, I., Barath, D., Anderson, A. C., & Reynolds, C. F. (2021) · American Journal of Preventive Medicine · doi:10.1016/j.amepre.2020.12.014 · Cited by 15
Maruta, M., Makizako, H., Ikeda, Y., Miyata, H., Nakamura, A., Han, G., Shimokihara, S., Tokuda, K., Kubozono, T., Ohishi, M., et al. (2021) · International Journal of Geriatric Psychiatry · doi:10.1002/gps.5544 · Cited by 17
“However, more than half of people with dementia in the community feel that they need access to meaningful activities but are not adequately addressed.(39) MCI is defined as the independence of basic daily life, but has some mild difficulties in performing complex daily activities.”
BackgroundDementia care needs for individuals and caregivers among Mexican Americans and non-Hispanic Whites
Mehdipanah, R., Briceño, E. M., Gonzales, X. F., Heeringa, S. G., Levine, D. A., Langa, K. M., Garcia, N. M., Longoria, R., & Morgenstern, L. B. (2021) · Aging & Mental Health · doi:10.1080/13607863.2021.1925222 · Cited by 15
“These key areas identified by both the caregivers and health professionals who participated in the study included: caregiver support, information and training for the caregivers, specialized medical care, and day-today needs and resources, and are aligned with the existing literature on unmet needs (Black et al., 2013…”
BackgroundUnmet needs of informal carers of the oldest old in Portugal
Alves, S., Ribeiro, Ó. M., & Paúl, C. (2020) · Health & Social Care in the Community · doi:10.1111/hsc.13063 · Cited by 16
Carnahan, J. L., Judge, K. S., Daggy, J., Slaven, J. E., Coleman, N., Fortier, E. L., Suelzer, C., & Fowler, N. R. (2020) · Trials · doi:10.1186/s13063-020-4199-1 · Cited by 14
“Growing evidence indicates that family caregivers of patients with ADRD and TBI provide more assistance with activities of daily living (ADL) and spend more time on the management of the patients’ safety and behavioral symptoms than caregivers of people without cognitive impairments [11, 12].”
BackgroundCotton, Q. D., Kind, A., Kim, A. J., Block, L., Thyrian, J. R., Monsees, J., Shah, M. N., & Gilmore‐Bykovskyi, A. L. (2021) · Journal of Alzheimer s Disease · doi:10.3233/jad-210609 · Cited by 14
“This is particularly problematic as caregivers living in socially disadvantaged neighborhoods may experience higher levels of unmet needs, additional barriers to accessing supportive services, and delayed service use [21, 22].”
Perceived Unmet Need and Need-Related Distress of People Living With Dementia
Minyo, M. J., & Judge, K. S. (2022) · Gerontology and Geriatric Medicine · doi:10.1177/23337214221092886 · Cited by 14
“Research thus far has focused on questions pertaining to correlates of unmet need (Black et al., 2012; Black et al., 2013) or the discrepancy between a person with dementia’s self-report and a caregiver’s proxyreport of needs (Kerpershoek et al.”
BackgroundInfluentialZheng, R., Wang, J., Wang, Y., Zhu, P., Wang, L., Zhang, Z., & Dong, F. (2024) · International Journal of Nursing Studies · doi:10.1016/j.ijnurstu.2024.104772 · Cited by 14
Quality Improvement in Neurology: Dementia Management Quality Measurement Set Update
Sanders, A. E., Nininger, J. E., Absher, J. R., Bennett, A., Shugarman, S. A., & Roca, R. P. (2017) · American Journal of Psychiatry · doi:10.1176/appi.ajp.2017.17401 · Cited by 14
Michalowsky, B., Henning, E., Rädke, A., Dreier, A., Altiner, A., Wollny, A., Drewelow, E., Kohlmann, T., Biedenweg, B., Buchholz, M., et al. (2020) · Journal of Advanced Nursing · doi:10.1111/jan.14705 · Cited by 14
Telenius, E. W., Eriksen, S., & Rokstad, A. M. M. (2020) · BMJ Open · doi:10.1136/bmjopen-2019-035886 · Cited by 14
What are the unmet needs in people affected by dementia? A scoping review of reviews
Koh, W. Q., Roes, M., de Vugt, M. E., Sezgin, D., Gonçalves‐Pereira, M., Müller, N., Diaz-Ponce, A. M., Casey, D., Ingram, C., Walden, A., et al. (2025) · Aging & Mental Health · doi:10.1080/13607863.2025.2534406 · Cited by 16
“…et al., 2010; Mueller et al., 2022 Difficulties balancing personal needs with caring role ( n = 9) Acton et al., 2023; Barker et al., 2017; Black et al., 2013; Cross et al., 2018; Duran-Kiraç et al., 2022; Joy et al., 2023; lindeza et al., 2020; tan et al., 2024 Formal care services…”
InfluentialMangiaracina, F., Meiland, F. J. M., Kerkhof, Y. J. F., Orrell, M. W., Graff, M. J. L., & Dröes, R. (2019) · International Psychogeriatrics · doi:10.1017/s1041610218001709 · Cited by 13
The Intersection of Falls and Dementia in Primary Care
Casey, C. M., Caulley, J. M., & Phelan, E. A. (2020) · Medical Clinics of North America · doi:10.1016/j.mcna.2020.06.003 · Cited by 13
CommunityRx: Optimizing a Community Resource Referral Intervention for Minority Dementia Caregivers
Abramsohn, E., Paradise, K., Glover, C. M., Benjamins, M. R., Douglas, L., Jerome, J. S., Kim, M. L., Kostas, T., Mata, D., Padron, F., et al. (2021) · Journal of Applied Gerontology · doi:10.1177/07334648211005594 · Cited by 13
“In a prior study, the highest rated unmet need among caregivers (32% identifying as a race or ethnicity other than white) was for community resource referrals (90%) (Black et al., 2013).”
BackgroundAndersson, M. A., Walker, M., & Kaskie, B. P. (2017) · Journal of Aging and Health · doi:10.1177/0898264317744920 · Cited by 13
“Unmet needs among caregivers also are predicted by challenges inherent to the caregiving situation itself (Black et al., 2013; Casado et al., 2011).”
BackgroundQuality improvement in dementia care
Schultz, S. K., Llorente, M. D., Sanders, A. E., Tai, W. A., Bennett, A., Shugarman, S. A., & Roca, R. P. (2020) · Neurology · doi:10.1212/wnl.0000000000008678 · Cited by 13
Latulippe, K., Hamel, C., & Giroux, D. (2020) · JMIR Human Factors · doi:10.2196/18120 · Cited by 14
“Factors that increase the risk of burnout among caregivers (ie, ethnicity, language, gender, socioeconomic status, health literacy, age, poor education, history of depression, and high time consumption for care) are virtually the same factors that increase the risk of experiencing SHIs [47-49].”
BackgroundYous, M., Ploeg, J., Kaasalainen, S., McAiney, C. A., & Fisher, K. (2022) · BMC Geriatrics · doi:10.1186/s12877-022-03483-9 · Cited by 13
“Despite the multitude of organizations that exist, caregivers continue to seek education and support for caring for older persons with dementia at home making this area an important priority for research [7, 96].”
BackgroundFakolade, A. O., Latimer‐Cheung, A. E., Parsons, T. L., & Finlayson, M. L. (2018) · Disability and Rehabilitation · doi:10.1080/09638288.2018.1479781 · Cited by 12
“Originally developed to predict health service utilization, it has now become an extensively used model for needs assessment and analysis of factors that can influence perceived need [21,22].”
The Role of Confidence in Family Caregiving for People with Dementia
DiZazzo-Miller, R., Pociask, F. D., & Adamo, D. E. (2020) · Physical & Occupational Therapy In Geriatrics · doi:10.1080/02703181.2020.1762824 · Cited by 12
Henriksen, N. O., Moholt, J.-M., & Blix, B. H. (2020) · Journal of Aging & Social Policy · doi:10.1080/08959420.2019.1707058 · Cited by 12
“In addition, family caregivers ’ most unmet needs related to resource referrals, followed by caregiver education (Black et al., 2013).”
BackgroundCaring for seniors living with dementia means caring for their caregivers too
Poirier, A., Voyer, P., Légaré, F., Morin, M., Witteman, H. O., Kröger, E., Martineau, B., Rodríguez, C., & Giguere, A. M. C. (2017) · Canadian Journal of Public Health · doi:10.17269/cjph.108.6217 · Cited by 12
“assistance with day-to-day activities, management of symptoms, and maintenance of a supportive environment that provides an optimal quality of life.(3) Informal caregivers are also essential to translate the values of the person living with dementia into decision-making.”
BackgroundHirschman, K. B., McHugh, M., & Morgan, B. (2023) · Alzheimer's & Dementia: Translational Research & Clinical Interventions · doi:10.1002/trc2.12391 · Cited by 11
BPSD reconsidered: diagnostic considerations to preserve personhood in persons with dementia
Warren, A. (2023) · Frontiers in Dementia · doi:10.3389/frdem.2023.1272400 · Cited by 11
Evans, I., Patel, R., Stoner, C. R., Melville, M., & Spector, A. E. (2024) · Behavioral Sciences · doi:10.3390/bs14030177 · Cited by 13
“Research indicates that the caregiving role significantly affects health and wellbeing [12], encompassing increases in stigma [13], burden [14] and mental health difficulties [15].”
BackgroundFamily/caregiver influence on osteoporosis management for older people: an integrative review
Zubick, P., & Dahlke, S. (2024) · Osteoporosis International · doi:10.1007/s00198-024-07081-w · Cited by 11
Yous, M., Ploeg, J., Kaasalainen, S., & McAiney, C. A. (2020) · Journal of Advanced Nursing · doi:10.1111/jan.14623 · Cited by 12
Alzheimer Caregiving Problems According to ADLs: Evidence from Facebook Support Groups
Bachmann, P., & Hruška, J. (2022) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph19116423 · Cited by 11
“Caregivers are forced to limit the time for their own self-care and socialization [18] and are exposed to a higher risk of depression and health problems in general [19,20].”
BackgroundHodgson Nancy, A. (2014) · Journal of Geriatrics and Palliative Care · doi:10.13188/2373-1133.1000010 · Cited by 11
“Using a cross sectional design, the unmet needs of PWD and their caregivers were assessed using baseline data collected between 20082010 and before participant randomization into a trial evaluating a dementia care coordination intervention (the Maximizing Independence (MIND) at Home study) [11].”
BackgroundMethodHolthe, T., & Wulff-Jacobsen, I. (2016) · Family Medicine & Primary Care Review · doi:10.5114/fmpcr.2016.63710 · Cited by 11
Unmet needs in Primary Care of older clients with mental health concerns
Alves, S., Teixeira, L., Azevedo, M. J., Duarte, M. G., Ribeiro, Ó. M., & Paúl, C. (2018) · International Journal for Quality in Health Care · doi:10.1093/intqhc/mzy154 · Cited by 11
“Despite this, unmet needs are relevant indicators of quality of life (QoL) and in people with mental problems enhance the risk of negative health events [14].”
BackgroundResultIdentifying and Addressing Unmet Needs in Dementia: The Role of Care Access and Psychosocial Support
Scharf, A., Michalowsky, B., Rädke, A., Kleinke, F., Schade, S., Platen, M., Buchholz, M., Pfaff, M., Iskandar, A., van den Berg, N., et al. (2025) · International Journal of Geriatric Psychiatry · doi:10.1002/gps.70066 · Cited by 13
A look at caregivers for community‐living persons with dementia: Implications for the GUIDE model
Burgdorf, J. G., Freedman, V. A., & Wolff, J. L. (2025) · Alzheimer s & Dementia · doi:10.1002/alz.70013 · Cited by 10
“30 Providers, in the GUIDE model and beyond, should be prepared with standardized tools to facilitate their efforts in assessing caregiver stress and capacity, determining appropriate resources (e.g., support groups, skills training, social work), and encouraging actual uptake of these services by…”
Antonsdottir, I. M., Leoutsakos, J., Sloan, D. H., Spliedt, M., Johnston, D. M., Reuland, M., Lyketsos, C. G., Amjad, H., & Samus, Q. M. (2022) · Aging & Mental Health · doi:10.1080/13607863.2022.2046698 · Cited by 10
“0 (Black et al., 2013) and is used by trained clinicians to document unmet needs in 13 domains (representing 61 individual items) overall (PLWD + CP) and six domains specifically for informal CPs (18 individual items): CP Memory Disorder education, CP General Health Care, CP Mental Health, CP Daily Living, CP Informal…”
MethodSelf-citationRobertson, K., Thyne, M. A., & Matheson, I. (2022) · Health & Social Care in the Community · doi:10.1111/hsc.13796 · Cited by 9
Care Need Combinations for Dementia Patients with Multiple Chronic Diseases
Jhang, K.-M., Wang, W., Cheng, Y.-C., Tung, Y., Yen, S., & Wu, H. (2023) · Psychology Research and Behavior Management · doi:10.2147/prbm.s388394 · Cited by 10
Kipfer, S., Eicher, M., Bachmann, A. O., & Pihet, S. (2018) · The JBI Database of Systematic Reviews and Implementation Reports · doi:10.11124/jbisrir-2017-003367 · Cited by 10
Ying, Y., Huang, L., Shen, L., Zhou, C., Zhu, X., & Yin, Z. (2020) · Disability and Rehabilitation · doi:10.1080/09638288.2020.1833091 · Cited by 10
“However, due to the modernization of China, the collapse of the big family structure, and women as the main caregivers enter the labour market in large numbers [14,16], it is often difficult for families to afford sustainable and high-quality care and support [2,41,42], which aggravates the elderly’s guilt, helplessne…”
BackgroundChen, S., Zhang, H., Underwood, B. R., Wang, D., Chen, X., & Cardinal, R. N. (2023) · Innovation in Aging · doi:10.1093/geroni/igad028 · Cited by 9
“Furthermore, the needs of people with cognitive impairment are complex and coordination between different agencies in the health and social care systems is not always efficient, leading to inadequate measures of unmet need among this population (1,40).”
BackgroundPark, M., Kim, S. K., Jeong, M., Lee, S. J., Kim, S. H., Kim, J., & Lee, D. Y. (2018) · Asian Nursing Research · doi:10.1016/j.anr.2018.04.001 · Cited by 9
Roberts, E. R. (2023) · INQUIRY The Journal of Health Care Organization Provision and Financing · doi:10.1177/00469580221150565 · Cited by 9
Aravena, J. M., Cecilia Albala, B., & Gitlin, L. N. (2017) · International Journal of Geriatric Psychiatry · doi:10.1002/gps.4734 · Cited by 10
Cations, M., Crotty, M., Fitzgerald, A., Kurrle, S. E., Cameron, I. D., Whitehead, C., Thompson, J., Kaambwa, B., Hayes, K., de la Perrelle, L., et al. (2018) · Implementation Science · doi:10.1186/s13012-018-0820-z · Cited by 10
The Changing Profile of Patients in a Geriatric Medicine Led Memory Clinic over 12 Years
Chua, X. Y., Ha, N. H. L., Cheong, C. Y., Wee, S. L., & Yap, P. L. K. (2019) · The journal of nutrition health & aging · doi:10.1007/s12603-019-1161-6 · Cited by 9
Content of Home-Based Dementia Care: Adverse Consequences of Unmet Toileting Needs
Reckrey, J. M., Bollens‐Lund, E., & Ornstein, K. A. (2020) · Journal of Applied Gerontology · doi:10.1177/0733464820952995 · Cited by 9
“Yet evidence suggests that those with dementia living in the community experience high levels of adverse consequences of unmet care needs and are particularly reliant on family and paid caregivers (Black et al., 2013; Kasper et al., 2015).”
Chester, H., Beresford, R., Clarkson, P., Entwistle, C., Gillan, V., Hughes, J., Orrell, M. W., Pitts, R., Russell, I. T., Symonds, E., et al. (2021) · Aging & Mental Health · doi:10.1080/13607863.2020.1870204 · Cited by 9
Amano, T., Halvorsen, C., Kim, S., Reynolds, A., Scher, C. J., & Jia, Y. (2023) · Alzheimer s & Dementia · doi:10.1002/alz.13574 · Cited by 7
“66,67 Given that unmet needs of people with ADRD are more likely to be social than medical or clinical, 66–69 social support increased by a diagnostic label may be limited to certain aspects of support.”
BackgroundHome-Delivered Meals and Nursing Home Placement Among People With Self-Reported Dementia
Thomas, K. S., Bunker, J., Gadbois, E. A., Hilgeman, M. M., McCreedy, E. M., Mills, W. L., Ornstein, K. A., Reckrey, J. M., & Gutman, R. (2023) · JAMA Network Open · doi:10.1001/jamanetworkopen.2023.47195 · Cited by 8
Hameed, J., Huo, C., Albasher, G. I., & Naeem, M. A. (2024) · Journal of Cleaner Production · doi:10.1016/j.jclepro.2024.143066 · Cited by 8
Fang, W., Phung, H. N., Olley, R., & Lee, P. (2024) · Healthcare · doi:10.3390/healthcare12232468 · Cited by 8
Gaylord, S. A., Faurot, K. R., Shafer, J. S., Harr, E. D., Lathren, C., Roth, I., Giscombé, K., Sheffield-Abdullah, K. M., & Williams, S. (2022) · Contemporary Clinical Trials Communications · doi:10.1016/j.conctc.2022.101031 · Cited by 8
Ramirez, M., Anda, S. D., Jin, H., Herrera, J., & Wu, S. (2023) · Journal of Applied Gerontology · doi:10.1177/07334648231163430 · Cited by 8
“The questions inquired about the information sought by a caregiver with regard to the common aspects of caregiving (Black et al., 2013; Callahan et al., 2012; Hodgson et al., 2013).”
BackgroundProactive Care-Seeking Strategies Among Adults Aging Solo With Early Dementia: A Qualitative Study
Lowers, J., Datcher, I., Kavalieratos, D., Hepburn, K. W., & Perkins, M. M. (2024) · The Journals of Gerontology Series B · doi:10.1093/geronb/gbae020 · Cited by 10
Rol del cuidador familiar novel de adultos en situación de dependencia: Scoping Review
Garzón, N. E., Carreño-Moreno, S., & Chaparro-Díaz, L. (2021) · Revista CUIDARTE · doi:10.15649/cuidarte.1368 · Cited by 26
Huang, L., Wu, H., Zhang, F., Zhao, H., Chen, Y., Feng, M., You, Y., Peng, X., Guan, C., & Liu, Y. (2023) · BMC Geriatrics · doi:10.1186/s12877-023-04354-7 · Cited by 8
“Hence, these people may prefer someone to check in on them, chat, accompany them to conduct outside affairs, or provide assistance [49, 50].”
BackgroundWashington, T. R., & Tachman, J. A. (2016) · Journal of Gerontological Social Work · doi:10.1080/01634372.2016.1257530 · Cited by 8
“This oversight is especially true for community-dwelling caregivers whose responsibilities increase as the care recipient’s disease progresses (Black et al., 2013).”
BackgroundGarriga, O. T., Costa, S. F., Terré, A. P., & Amat, P. B. (2018) · Revista Española de Geriatría y Gerontología · doi:10.1016/j.regg.2017.12.002 · Cited by 10
Harrison, J. M., Sheng, F., Josberger, R. E., Liu, H. H., Stone, P. W., Luchsinger, J. A., & Dick, A. W. (2023) · JAMA Network Open · doi:10.1001/jamanetworkopen.2023.22520 · Cited by 7
Almutairi, G. R., Almegbas, N. R., Alosaimi, R. M., Alqahtani, M. A., Batook, S. G., Alfageh, I. A., Alshehri, M. M., Alanazi, S. F., Alhowimel, A., Alqahtani, B. A., et al. (2024) · PLoS ONE · doi:10.1371/journal.pone.0309765 · Cited by 7
“Caregivers spend an average of 6.7 h on informal care for people with dementia [21].”
BackgroundInfluentialSun, T., Jia, R., Clarke, J.-A., Zhu, M., Dobbs, D., Di, Y., Dong, X., & Meng, H. (2022) · Dementia · doi:10.1177/14713012221094979 · Cited by 7
“This finding is consistent with those obtained from the MIND study in Baltimore, Maryland, in which 48% of dementia caregivers reported needing legal assistance (Black et al., 2013).”
ResultRussell, D., Miyawaki, C. E., Reckrey, J. M., & Bouldin, E. D. (2024) · Journal of Applied Gerontology · doi:10.1177/07334648241280041 · Cited by 9
“Unmet needs emerge when caregivers have needs for, but have not accessed, available services and support, such as assistance with ADRD evaluation and diagnosis, navigating health insurance, addressing home safety issues, or making advance care plans (Black et al., 2013).”
Miller, L. M., Solomon, D. N., Whitlatch, C. J., Hiatt, S. O., Wu, C., Reynolds, C., Au-Yeung, W.-T. M., Kaye, J. A., & Steele, J. S. (2022) · Innovation in Aging · doi:10.1093/geroni/igac006 · Cited by 8
Carey, M. L., Mansfield, E. L., Cameron, E. C., Boyes, A., Browne, W., Dizon, J., & Sanson‐Fisher, R. (2023) · Psychogeriatrics · doi:10.1111/psyg.12996 · Cited by 7
Vascular cognitive impairment: When memory loss is not the biggest challenge
van de Schraaf, S. A. J., Smit, M. F., Muller, M., Hertogh, C. M. P. M., Rhodius‐Meester, H. F. M., & Sizoo, E. M. (2023) · Dementia · doi:10.1177/14713012231214299 · Cited by 7
“Unmet needs of people with dementia and their caregivers are associated with earlier nursing home admissions, increased mortality and depressive symptoms (Black et al., 2013; Gaugler et al., 2005).”
BackgroundCaregivers’ Burden on Patients with Dementia Having Multiple Chronic Diseases
Jhang, K.-M., Liao, G.-C., Wang, W., Tung, Y., Yen, S., & Wu, H. (2024) · Risk Management and Healthcare Policy · doi:10.2147/rmhp.s454796 · Cited by 8
Muistisairaiden ja puoliso-omaishoitajien kokemuksia tuen riittämättömyydestä
Aerschot, L. V., Eskola, P., & Aaltonen, M. S. (2021) · Gerontologia · doi:10.23989/gerontologia.99262 · Cited by 7
Takechi, H., Hara, N., Eguchi, K., Inomata, S., Okura, Y., Shibuya, M., Yoshino, H., Ogawa, N., & Suzuki, M. (2023) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph20065044 · Cited by 7
Anticipatory anxiety about future dementia‐related care needs: towards a dementia‐friendly community
Okamura, T., Sugiyama, M., Inagaki, H., Murayama, H., Ura, C., Miyamae, F., Edahiro, A., Motokawa, K., & Awata, S. (2019) · Psychogeriatrics · doi:10.1111/psyg.12433 · Cited by 7
Guideline Adaptation Committee, C. P. G. F. D. I. A. (2016) · Australian Journal on Ageing · doi:10.1111/ajag.12330 · Cited by 7
Thomas, K. S., Dosa, D. M., Fisher, A., Gadbois, E. A., Harrison, J., Hilgeman, M. M., Largent, E. A., Lima, J. C., McAuliff, K., McCreedy, E. M., et al. (2022) · Contemporary Clinical Trials · doi:10.1016/j.cct.2022.106897 · Cited by 6
Hughes, M., Hanna, K. L., Wiles, A., Taylor, E., & Giebel, C. M. (2024) · Dementia · doi:10.1177/14713012231225797 · Cited by 8
“Research highlights that carers for people with dementia alone already have very high unmet needs (e.g., education regarding dementia, mental health and external and practical support (Black et al., 2013; Gaugler et al., 2004; Jennings et al., 2015; Li, 2012; Philp et al., 1995).”
BackgroundDementia Severity Associated With Unmet Caregiving Needs During Skilled Home Health Care
Burgdorf, J. G., Wolff, J. L., Barrón, Y., & Amjad, H. (2025) · Journal of Applied Gerontology · doi:10.1177/07334648251332232 · Cited by 6
“%) dementia caregivers report unmet needs for caregiving-related education (Black et al., 2013; Bynum, 2014; National Academies, 2021).”
King, D. K., Faulkner, S. A., & Hanson, B. L. (2017) · Activities Adaptation & Aging · doi:10.1080/01924788.2017.1391030 · Cited by 6
“With more than 70% of Americans with Alzheimer’s disease and other forms of dementia living at home or in the community (Alzheimer’s Association, 2015), the need for effective, affordable, and convenient programming that addresses factors associated with institutionalization is increasing (Black et al., 2013; Cassie &…”
BackgroundLatulippe, K., Guay, M., Giguere, A. M. C., Provencher, V., Sévigny, A., Poulin, V., Dubé, V., Éthier, S., Carignan, M., & Giroux, D. (2018) · Revue d Épidémiologie et de Santé Publique · doi:10.1016/j.respe.2018.10.002 · Cited by 8
Cognitive impairment among medicare home health patients: comparing available measures
Burgdorf, J. G., & Amjad, H. (2021) · Home Health Care Services Quarterly · doi:10.1080/01621424.2021.2009392 · Cited by 6
“(Ankuda et al., 2020; Black et al., 2013; Burgdorf, Amjad, & Bowles, 2021; Burgdorf, Mroz, & Wolff, 2020; Knox, Downer, Haas, Middleton, & Ottenbacher, 2020; Samus et al., 2018; Wang et al., 2020) Home health care, a Medicare benefit that provides eligible beneficiaries with skilled nursing and…”
BackgroundYous, M., Ploeg, J., Kaasalainen, S., & McAiney, C. A. (2022) · Canadian Journal on Aging / La Revue canadienne du vieillissement · doi:10.1017/s0714980822000174 · Cited by 7
“Specifically, experiential thematic analysis was used, as it is suitable for the current study which focuses on participants ’ experiences and how they view their world (Braun & Clarke, 2013).”
Metadata
- Authors
- Black, B. S., Johnston, D., Rabins, P. V., Morrison, A., Lyketsos, C., & Samus, Q. M.
- Affiliations
- Johns Hopkins University (US)
- Morrison and Associates, LLC Baltimore Maryland
- Corresponding author
- Black, Betty S.
- Venue
- Journal of the American Geriatrics Society
- Publisher
- Wiley
- Published
- 2013-11-25
- Volume
- 61
- Issue
- 12
- Pages
- 2087-2095
- ISSN
- 0002-8614 (ISSN-L)
- 1532-5415
- PMC
- PMC4001885
- OpenAlex
- W2013551598
- Cited by
- 335
- References
- 54
- Citations by year
- 2026: 13 · 2025: 18 · 2024: 33 · 2023: 30 · 2022: 39 · 2021: 30 · 2020: 41 · 2019: 31 · 2018: 39 · 2017: 26 · 2016: 16 · 2015: 12 · 2014: 7
- FWCI
- 8.12
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Journal of the American Geriatrics Society (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- Hoffberger Family Fund
- LeRoyHoffberger
- Harry and Jeannette Weinberg Foundation
- Rosenberg Foundation
- Hirschhorn Foundation
- Stulman Charitable Foundation
- Meyerhoff Foundation
- Marc and Leonor Blum
- Baltimore County Department of Aging
- Blum Family
- Lowell Glazer
- Greif Family Fund
- Marvin Schapiro Family Foundation
- Lois and Phillip Macht
- Eliasberg Family Foundation
- Richard and Rosalee Davison
- Alison & Arnold Richman
- Moser Family Philanthropic Fund
- Richard Lansburgh
- Anonymous
- Jewish Community Federation of Baltimore
- Jewish Federation of Baltimore
- National Institute on Aging (R01 AG038440)
- Weinberg Foundation
- Forest
- Glaxo-Smith-Kline
- Eisai
- Pfizer
- Astra-Zeneca
- Lilly
- Ortho-McNeil
- Bristol-Myers
- Novartis
- National Football League
- Elan
- Functional Neuromodulation Inc.
- National Institute of Mental Health (K01 MH085142)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Nursing › Research and Theory › Nursing care and research
- Health Sciences › Medicine › Geriatrics and Gerontology › Geriatric Care and Nursing Homes
- Keywords
- dementia, unmet needs, informal caregivers, community-dwelling older adults, care coordination, caregiver needs, safety needs, meaningful activities, caregiver depression, racial and ethnic disparities, socioeconomic status, activities of daily living, caregiver education, resource referral, early-stage dementia, quality of life
- MeSH terms
- Aged, Aged, 80 and over, Cross-Sectional Studies, Dementia, Female, Health Services Needs and Demand, Humans, Male, Quality of Life, Baltimore, Geriatric Assessment, Caregivers, Needs Assessment
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