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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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- Black BS, 2008, Manual for the Johns Hopkins Dementia Care Needs Assessment (JHDCNA)
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Assessment of Activities of Daily Living, Self-Care, and Independence
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“Quantitative literature in part supports this, with unmet medical needs being related to carerQOL[39].”
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Stephan, A., Bieber, A., Hopper, L., Joyce, R. L., Irving, K., Zanetti, O. O., Portolani, E., Kerpershoek, L., Verhey, F. R. J., de Vugt, M. E., et al. (2018) · BMC Geriatrics · doi:10.1186/s12877-018-0816-1 · Cited by 261
What do family caregivers of people with dementia need? A mixed‐method systematic review
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Race Differences in Characteristics and Experiences of Black and White Caregivers of Older Americans
Fabius, C. D., Wolff, J. L., & Kasper, J. D. (2020) · The Gerontologist · doi:10.1093/geront/gnaa042 · Cited by 178
“Black caregivers report worse physical health and greater unmet needs for supportive services compared with white caregivers (Badana et al., 2017; Black et al., 2013; Sörensen & Pinquart, 2005), perhaps due to greater caregiving demands and constrained financial resources (Rosenthal Gelman, Sokoloff, Graziani, Arias,…”
BackgroundWhitlatch, C. J., & Orsulic‐Jeras, S. (2017) · The Gerontologist · doi:10.1093/geront/gnx162 · Cited by 161
“Likewise, there is a growing need for quality education and support programs to help individuals living with dementia, family caregivers, and professionals (Black et al., 2013; Peeters, Van Beek, Meerveld, Spreeuwenberg, & Francke, 2010).”
Samus, Q. M., Johnston, D. M., Black, B. S., Hess, E., Lyman, C. H., Vavilikolanu, A., Pollutra, J., Leoutsakos, J., Gitlin, L. N., Rabins, P. V., et al. (2014) · American Journal of Geriatric Psychiatry · doi:10.1016/j.jagp.2013.12.175 · Cited by 156
Self-citationBlack, B. S., Johnston, D., Leoutsakos, J., Reuland, M., Kelly, J., Amjad, H., Davis, K., Willink, A., Sloan, D., Lyketsos, C., et al. (2019) · International Psychogeriatrics · doi:10.1017/s1041610218002296 · Cited by 145
“The JohnsHopkinsDementiaCareNeedsAssessment (JHDCNA, 2.0), a revised version of the original tool (JHDCNA, 1.0) (Black et al., 2013; Johnston et al., 2011), was used to identify dementia-related needs of PWD and their caregivers.”
BackgroundMethodResultInfluentialSelf-citationUnderstanding the needs of caregivers of persons with dementia: a scoping review
Queluz, F. N. F. R., Kervin, E., Wozney, L., Fancey, P., McGrath, P. J., & Keefe, J. (2020) · International Psychogeriatrics · doi:10.1017/s1041610219000243 · Cited by 142
Poor caregiver mental health predicts mortality of patients with neurodegenerative disease
Lwi, S. J., Ford, B. Q., Casey, J., Miller, B. L., & LEVENSON, R. W. (2017) · Proceedings of the National Academy of Sciences · doi:10.1073/pnas.1701597114 · Cited by 147
“, eating) to administering health directives and advocating for their care (4).”
BackgroundClinical practice guidelines for dementia in Australia
Laver, K., Cumming, R. G., Dyer, S. M., Agar, M. R., Anstey, K. J., Beattie, E., Brodaty, H., Broe, T., Clemson, L. M., Crotty, M., et al. (2016) · The Medical Journal of Australia · doi:10.5694/mja15.01339 · Cited by 136
Laver, K., Milte, R., Dyer, S. M., & Crotty, M. (2016) · Journal of Aging and Health · doi:10.1177/0898264316660414 · Cited by 138
“Carers have reported that they want more education, skills counseling, emotional support, and respite to help them in their caring role (Black et al., 2013; Hughes et al., 2014).”
BackgroundHome is where the future is: The BrightFocus Foundation consensus panel on dementia care
Samus, Q. M., Black, B. S., Bovenkamp, D. E., Buckley, M. J., Callahan, C. M., Davis, K. C., Gitlin, L. N., Hodgson, N. A., Johnston, D. M., Kales, H. C., et al. (2017) · Alzheimer s & Dementia · doi:10.1016/j.jalz.2017.10.006 · Cited by 107
“Caregivers, who are critical factors in the equation, often lack emotional support, respite time, disease education, and care for their own mental health and medical needs, and key services to meet these needs are often underutilized, not locally available, too expensive, or not accessible [13,14,20].”
BackgroundSelf-citationMacleod, A., Tatangelo, G. L., McCabe, M. P., & You, E. C. (2017) · International Psychogeriatrics · doi:10.1017/s1041610216002532 · Cited by 110
CommunityRx: A Population Health Improvement Innovation That Connects Clinics To Communities
Lindau, S. T., Makelarski, J. A., Abramsohn, E., Beiser, D. G., Escamilla, V., Jerome, J. S., Johnson, D., Kho, A., Lee, K. K. C., Long, T., et al. (2016) · Health Affairs · doi:10.1377/hlthaff.2016.0694 · Cited by 93
“The CommunityRx intervention included three components: (1) a youth workforce (MAPSCorps) that conducted an annual census of community resources, (2) Community Health Information Specialists (CHIS) who both surveyed community resources and supported participant navigation to resources, and (3) an IT platform for commu…”
MethodKerpershoek, L., de Vugt, M. E., Wolfs, C. A. G., Woods, B. T., Jelley, H., Orrell, M. W., Stephan, A., Bieber, A., Meyer, G., Selbæk, G., et al. (2017) · Aging & Mental Health · doi:10.1080/13607863.2017.1390732 · Cited by 90
“A number of studies have investigated these needs from various perspectives (Bakker et al., 2014; Black et al., 2013; Miranda-Castillo et al., 2010; Miranda-Castillo, Woods, & Orrell, 2013; van der Roest et al., 2009).”
BackgroundNyman, S. R., & Szymczyńska, P. (2016) · Perspectives in Public Health · doi:10.1177/1757913915626193 · Cited by 96
Potentially Unsafe Activities and Living Conditions of Older Adults with Dementia
Amjad, H., Roth, D. L., Samus, Q. M., Yaşar, S., & Wolff, J. L. (2016) · Journal of the American Geriatrics Society · doi:10.1111/jgs.14164 · Cited by 84
Self-citationKhanassov, V., & Vedel, I. (2016) · The Annals of Family Medicine · doi:10.1370/afm.1898 · Cited by 83
Hansen, A., Hauge, S., & Bergland, Å. (2017) · BMC Geriatrics · doi:10.1186/s12877-017-0612-3 · Cited by 94
“The limited number of studies that focus on the needs of PWDs who are receiving home care services, have primarily focused on needs in general, and not on specific psychosocial needs [44, 45].”
BackgroundNovais, T., Dauphinot, V., Krolak‐Salmon, P., & Mouchoux, C. (2017) · BMC Geriatrics · doi:10.1186/s12877-017-0481-9 · Cited by 83
“, cognition, behavioural disorders, dementia) 28 (78) [16, 20, 22, 23, 30, 37, 38, 40–42, 45, 46, 48, 50, 52–55, 58, 62, 64, 66, 67, 69, 70, 97–99] On the pharmacological treatment 17 (47) [16, 17, 22, 30, 40–42, 46, 50, 56, 64, 65, 67, 96–99] On the non-pharmacological treatment 3 (8) [47, 53, 96] On the available se…”
Tanner, J. A., Black, B. S., Johnston, D. M., Hess, E., Leoutsakos, J., Gitlin, L. N., Rabins, P. V., Lyketsos, C. G., & Samus, Q. M. (2014) · American Journal of Geriatric Psychiatry · doi:10.1016/j.jagp.2014.08.002 · Cited by 71
“However, dementia caregiver needs often go unevaluated and unmet (12-14).”
BackgroundMethodSelf-citationLord, K., Beresford‐Dent, J., Rapaport, P., Burton, A., Leverton, M., Walters, K. R., Lang, I., DOWNS, M. G., Manthorpe, J., Boex, S., et al. (2019) · Social Psychiatry and Psychiatric Epidemiology · doi:10.1007/s00127-019-01784-w · Cited by 70
Living in the Community With Dementia: Who Receives Paid Care?
Reckrey, J. M., Morrison, R. S., Boerner, K., Szanton, S. L., Bollens‐Lund, E., Leff, B. A., & Ornstein, K. A. (2019) · Journal of the American Geriatrics Society · doi:10.1111/jgs.16215 · Cited by 70
Fleisher, J. E., Barbosa, W. A., Sweeney, M. M., Oyler, S. E., Lemen, A. C., Fazl, A., Ko, M., Meisel, T., Friede, N., Dacpano, G., et al. (2018) · Journal of the American Geriatrics Society · doi:10.1111/jgs.15337 · Cited by 70
“With the increasing burden of chronic disease, the need for a sustainable home-based care model remains of utmost importance to address the growing needs of our aging population.(45) Programs such as Independence at Home(46) have successfully served elderly adults with chronic conditions other than PD and have highlig…”
BackgroundWarren, A. (2022) · Frontiers in Psychology · doi:10.3389/fpsyg.2022.875246 · Cited by 81
Gitlin, L. N., Marx, K., Piersol, C. V., Hodgson, N. A., Huang, J., Roth, D. L., & Lyketsos, C. (2021) · BMC Geriatrics · doi:10.1186/s12877-021-02511-4 · Cited by 65
Self-citationCognitive stimulation therapy (CST) for dementia: a systematic review of qualitative research
Gibbor, L., Yates, L., Volkmer, A., & Spector, A. E. (2020) · Aging & Mental Health · doi:10.1080/13607863.2020.1746741 · Cited by 61
“This is especially important when we consider the high level of unmet needs in those both living at home and in residential care (Black et al., 2013; Hancock, Woods, Challis, & Orrell, 2006).”
BackgroundPark, M., Choi, S., Lee, S. J., Kim, S. H., Kim, J., Go, Y., & Lee, D. Y. (2017) · International Psychogeriatrics · doi:10.1017/s104161021700196x · Cited by 58
“likely to be placed in a care facility (Black et al., 2013).”
Backgroundvan Mierlo, L. D., Meiland, F. J. M., van de Ven, P. M., van Hout, H. P. J., & Dröes, R. (2015) · International Psychogeriatrics · doi:10.1017/s1041610215000423 · Cited by 58
Curnow, E., Rush, R., Maciver, D., Górska, S., & Forsyth, K. (2019) · Aging & Mental Health · doi:10.1080/13607863.2019.1695741 · Cited by 58
“Also, needs are interrelated with risks (Seden, 2016), and unmet needs can result in adverse consequences such as falls, dehydration, lower quality of life, caregiver burden, institutionalisation and death (Black et al., 2013; Gaugler, Kane, Kane, & Newcomer, 2005).”
BackgroundHerron, R., & Rosenberg, M. W. (2016) · Social Science & Medicine · doi:10.1016/j.socscimed.2016.11.041 · Cited by 56
“Black et al. (2013) report that 99 per cent of people with dementia in their Maryland-based study experienced at least one unmet need and 42 per cent experienced eight or more unmet needs.”
BackgroundBangerter, L. R., Griffin, J. M., Zarit, S. H., & Havyer, R. (2019) · Journal of Applied Gerontology · doi:10.1177/0733464817705959 · Cited by 54
Hunt, L. J., Coombs, L. A., & Stephens, C. E. (2018) · Journal of Gerontological Nursing · doi:10.3928/00989134-20171206-01 · Cited by 56
Approach Matters: Linking Practitioner Approaches to Technology Design for People with Dementia
Dixon, E., & Lazar, A. (2020) · CHI Conference on Human Factors in Computing Systems · doi:10.1145/3313831.3376432 · Cited by 54
“In particular, engagement in meaningful activities is one of the greatest unmet needs for people with dementia [9,30,60].”
BackgroundInfluentialSchaller, S., Marinova-Schmidt, V., Setzer, M., Kondylakis, H., Griebel, L., Sedlmayr, M., Graessel, E., Maler, J. M., Kirn, S., & Kolominsky‐Rabas, P. L. (2016) · JMIR Research Protocols · doi:10.2196/resprot.4354 · Cited by 53
“Our results reveal that the eHM-DP is promising in addressing needs of both informal caregivers [2,3,30,31,33] and professionals [32] in the dementia treatment and care setting.”
Roberts, E. R., & Struckmeyer, K. M. (2018) · INQUIRY The Journal of Health Care Organization Provision and Financing · doi:10.1177/0046958017751507 · Cited by 53
“that 85% of caregivers had unmet needs for referrals to community resources (eg, Alzheimer’s Association) and caregiver education.(11) Almost half (45%) of caregivers had unmet needs in the area of mental health, most of whom needed emotional support or respite care.”
BackgroundEichler, T. S., Thyrian, J. R., Hertel, J., Richter, S., Wucherer, D., Michalowsky, B., Teipel, S. J., Kilimann, I., Dreier, A., & Hoffmann, W. U. (2016) · Journal of Alzheimer s Disease · doi:10.3233/jad-150935 · Cited by 52
“However, this finding is not in line with the results of Black and colleagues [6] who showed that the number of unmet needs was significantly associated with less impairment in ADLs.”
BackgroundMethodResultInfluentialWu, Y., Clare, L., Jones, I. R., Martyr, A., Nelis, S. M., Quinn, C., Victor, C. R., Lamont, R. A., Rippon, I., Matthews, F. E., et al. (2018) · International Journal of Geriatric Psychiatry · doi:10.1002/gps.4998 · Cited by 50
Needs of family caregivers in home care for older adults
Bierhals, C. C. B. K., dos Santos, N. O., Pizzol, F. L. F. D., Raubustt, K. D., Forbes, D. A., & Paskulin, L. M. G. (2017) · Revista Latino-Americana de Enfermagem · doi:10.1590/1518-8345.1511.2870 · Cited by 49
“A mixed exploratory study was conducted in three steps: (1) descriptive quantitative, (2) qualitative exploratory and (3) systematic observation, between June and November 2014 in a Primary Health Care Service (PHCS) in the South of Brazil.”
BackgroundMethodInfluentialMoholt, J.-M., Friborg, O., Blix, B. H., & Henriksen, N. O. (2018) · Dementia · doi:10.1177/1471301218804981 · Cited by 49
“Simultaneously, the unmet care needs among persons with dementia and their family caregivers are substantial (Black et al., 2013; Forbes, Morgan, & Janzen, 2006; Kerpershoek et al., 2017; van der Roest et al., 2009).”
BackgroundTailored e-Health services for the dementia care setting: a pilot study of ‘eHealthMonitor’
Schaller, S., Marinova-Schmidt, V., Gobin, J., Criegee‐Rieck, M., Griebel, L., Engel, S., Stein, V., Graessel, E., & Kolominsky‐Rabas, P. L. (2015) · BMC Medical Informatics and Decision Making · doi:10.1186/s12911-015-0182-2 · Cited by 49
“Particularly spouses and children (informal caregivers) provide extensive care, while facing different challenges and, thus, often suffering from additional physical and emotional burdens [2–7].”
BackgroundScerbe, A., O’Connell, M. E., Astell, A. J., Morgan, D., Kosteniuk, J. G., Panyavin, I. S., DesRoches, A., & Webster, C. (2023) · PLoS ONE · doi:10.1371/journal.pone.0283600 · Cited by 47
Factors Influencing Emergency Care by Persons With Dementia: Stakeholder Perceptions and Unmet Needs
Jacobsohn, G. C., Hollander, M. M., Beck, A. P., Gilmore‐Bykovskyi, A. L., Werner, N. E., & Shah, M. N. (2019) · Journal of the American Geriatrics Society · doi:10.1111/jgs.15737 · Cited by 44
Rathnayake, S., Moyle, W., Jones, C., & Calleja, P. (2018) · Dementia · doi:10.1177/1471301218768903 · Cited by 48
“They may have limited education and care skills related to dementia as well as insufficient coping skills and limited information about available support services in the community (Black et al., 2013; DiZazzo-Miller, Pociask, & Samuel, 2013; Karpathiou, 2015; Lai & Chung, 2007; Scott, Lewis, Loughlin, & Chambers, 2005…”
BackgroundUsing The Apriori Algorithm To Classify The Care Needs Of Patients With Different Types Of Dementia
Jhang, K.-M., Chang, M.-C., Lo, T.-Y., Lin, C., Wang, W.-F., & Wu, H. (2019) · Patient Preference and Adherence · doi:10.2147/ppa.s223816 · Cited by 44
van den Brink, A. M. A., Gerritsen, D. L., de Valk, M. M. H., Mulder, A. T., Voshaar, R. C. O., & Koopmans, R. T. C. M. (2018) · International Journal of Nursing Studies · doi:10.1016/j.ijnurstu.2018.02.008 · Cited by 43
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“While the existing laborious and caregiver-reliant care paradigm serves a purpose and holds well-deserved and hard-earned merits, it also hinders dementia care development—patients’ health and wellbeing, let alone access to care, are often contingent upon their informal caregivers’ could-be problematic abilities and e…”
BackgroundKhanassov, V., Rojas‐Rozo, L., Sourial, R., Yang, X. Q., & Vedel, I. (2021) · BMC Family Practice · doi:10.1186/s12875-021-01528-3 · Cited by 41
Ohno, S., Chen, Y., Sakamaki, H., Matsumaru, N., Yoshino, M., & Tsukamoto, K. (2021) · Journal of Medical Economics · doi:10.1080/13696998.2021.1880801 · Cited by 38
Virtual Support Groups for Informal Caregivers of Individuals With Dementia
Armstrong, M. J., & Slande Alliance (2019) · Alzheimer Disease & Associated Disorders · doi:10.1097/wad.0000000000000349 · Cited by 38
Kerkhof, Y. J. F., Pelgrum-Keurhorst, M. N., Mangiaracina, F., Bergsma, A., Vrauwdeunt, G., Graff, M. J. L., & Dröes, R. (2019) · Digital Health · doi:10.1177/2055207618822942 · Cited by 38
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“Community-dwelling persons with dementia and their caregivers have many unmet needs for care, services, and support (Black et al., 2013), and caregivers report that they turn to their health care providers as their top source of information in caring for their family member (National Alliance for…”
BackgroundHuis in het Veld, J. G., Verkaik, R., van Meijel, B., Verkade, P.-J., Werkman, W., Hertogh, C. M. P. M., & Francke, A. L. (2018) · Research in Gerontological Nursing · doi:10.3928/19404921-20180216-01 · Cited by 32
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“34,35 The other provided needs-tailored counselling to carers.”
Self-citationAbramsohn, E., Jerome, J. S., Paradise, K., Kostas, T., Spacht, W. A., & Lindau, S. T. (2019) · BMC Geriatrics · doi:10.1186/s12877-019-1341-6 · Cited by 36
“This finding corroborates evidence from prior studies that have focused on caregiving-specific needs [3, 25, 26] and adds knowledge about the kinds of resources these caregivers need for their own wellness and self-care.”
BackgroundResultKerkhof, Y., Bergsma, A., Graff, M. J. L., & Dröes, R. (2017) · Journal of Rehabilitation and Assistive Technologies Engineering · doi:10.1177/2055668317710593 · Cited by 36
van den Kieboom, R., Bongers, I. M. B., Mark, R. E., & Snaphaan, L. J. A. E. (2018) · JMIR Research Protocols · doi:10.2196/10952 · Cited by 36
“Owing to no cure for dementia currently, there is an urgent need to look for alternative ways to help and support people with dementia and their informal caregivers in the community [4].”
BackgroundDementia caregiver interventions in Chinese people: A systematic review
Wu, B., Petrovsky, D., Wang, J., Xu, H., Zhu, Z., McConnell, E. S., & Corrazzini, K. N. (2018) · Journal of Advanced Nursing · doi:10.1111/jan.13865 · Cited by 35
Predictors of unmet needs in Chilean older people with dementia: a cross-sectional study
Tapia Muñoz, T., Slachevsky, A., León-Campos, M. O., Madrid, M., Caqueo-Urízar, A., Rohde, G. C., & Miranda-Castillo, C. (2019) · BMC Geriatrics · doi:10.1186/s12877-019-1131-1 · Cited by 35
Primary Caregivers in a Network Context.
Marcum, C., Ashida, S., & Koehly, L. (2018) · The journals of gerontology. Series B, Psychological sciences and social sciences · doi:10.1093/geronb/gbx165 · Cited by 28
“Later in the trajectory, those in advanced stages often need additional help with performing Activities of Daily Living (ADL), taking medications, making decisions about care (Gitlin & Wolff, 2011), and others may require constant supervision to ensure safety (Black et al., 2013; Schulz & Tompkins, 2010).”
BackgroundAkarsu, N., Prince, M. J., Lawrence, V. C., & Das‐Munshi, J. (2019) · International Journal of Geriatric Psychiatry · doi:10.1002/gps.5070 · Cited by 34
Racial/Ethnic Differences in Health‐Related Quality of Life in Persons With and Without Dementia
Hayes‐Larson, E., Mobley, T. M., Gilmore‐Bykovskyi, A. L., Shaw, C. L., Karlamangla, A. S., Manly, J. J., & Mayeda, E. R. (2020) · Journal of the American Geriatrics Society · doi:10.1111/jgs.16908 · Cited by 33
Nursing home admissions for persons with dementia: Role of home‐ and community‐based services
Wang, S., Yan, D., Temkin‐Greener, H., & Cai, S. (2021) · Health Services Research · doi:10.1111/1475-6773.13715 · Cited by 33
Researchers’ perspectives on the role of study partners in dementia research
Black, B. S., Taylor, H. A., Rabins, P. V., & Karlawish, J. H. (2014) · International Psychogeriatrics · doi:10.1017/s1041610214001203 · Cited by 33
“Given that dementia-related caregiver needs – especially for resource referrals and education – often go unmet (Black et al., 2013a), study partners may need or expect relevant education and social support to enable their participation.”
BackgroundResultSelf-citationPrevalence and type of unmet needs experienced by carers of people living with dementia
Mansfield, E., Cameron, E. C., Boyes, A. W., Carey, M. L., Nair, B., Hall, A. E., & Sanson-Fisher, R. W. (2023) · Aging & Mental Health · doi:10.1080/13607863.2022.2053833 · Cited by 32
Acute hospital care: how much activity is attributable to caring for patients with dementia?
Briggs, R., Coary, R., Collins, R., Coughlan, T., O’Neill, D. J., & Kennelly, S. (2015) · QJM · doi:10.1093/qjmed/hcv085 · Cited by 33
Kerkhof, Y. J. F., Graff, M. J. L., Bergsma, A., de Vocht, H. M., & Dröes, R. (2016) · International Psychogeriatrics · doi:10.1017/s1041610216001071 · Cited by 32
“…in these phases will be conducted with persons with dementia apart from informal carers as we know that the needs reported by persons with dementia can differ from those mentioned (about the person with dementia) by carers (Van der Roest et al. , 2009; Black et al. , 2013; Castillo et al. , 2013).”
InfluentialBachmann, P. (2020) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph17124412 · Cited by 33
“Caregivers need to limit their time of their self-care and socializing [43] and are exhibited to higher risk of depression and health problems, in general [44,45].”
BackgroundUnmet care needs are common among community-dwelling older people with memory problems in Finland
Aaltonen, M. S., & Aerschot, L. V. (2019) · Scandinavian Journal of Public Health · doi:10.1177/1403494819890800 · Cited by 30
“In a study of community-dwelling older people with cognitive impairment and their informal caregivers in the US, almost all of the older people had at least one unmet need [23].”
BackgroundPredictors of Unmet Need Among Informal Caregivers
Campione, J. R., & Zebrak, K. A. (2020) · The Journals of Gerontology Series B · doi:10.1093/geronb/gbz165 · Cited by 31
A Biopsychosocial-Ecological Framework for Family-Framed Dementia Care
Podgorski, C. A., Anderson, S. D., & Parmar, J. (2021) · Frontiers in Psychiatry · doi:10.3389/fpsyt.2021.744806 · Cited by 30
Xiao, L. D., Bellis, A. D., Kyriazopoulos, H., Draper, B., & Ullah, S. (2015) · American Journal of Alzheimer s Disease & Other Dementias® · doi:10.1177/1533317515578256 · Cited by 31
“Interventions used in this trial were mainly informed by a critique of current research evidence in case management intervention in caregiver support.(7,8,15,19,20) In addition, findings from previous studies by the research team and consultations with the participating organizations about resources to support the tri…”
MethodBurgdorf, J. G., Reckrey, J. M., & Russell, D. (2022) · The Gerontologist · doi:10.1093/geront/gnac165 · Cited by 33
Quality improvement in neurology
Sanders, A. E., Nininger, J. E., Absher, J. R., Bennett, A., Shugarman, S. A., & Roca, R. P. (2017) · Neurology · doi:10.1212/wnl.0000000000003917 · Cited by 28
Samus, Q. M., Black, B. S., Reuland, M., Leoutsakos, J., Pizzi, L. T., Frick, K. D., Roth, D. L., Gitlin, L. N., Lyketsos, C. G., & Johnston, D. M. (2018) · Contemporary Clinical Trials · doi:10.1016/j.cct.2018.05.009 · Cited by 29
Self-citationGitlin, L. N., Hodgson, N. A., & Choi, S. (2015) · Springer eBooks · doi:10.1007/978-3-319-18377-0_11 · Cited by 28
Chiatti, C., Furneri, G., Rimland, J. M., Demma, F., Bonfranceschi, F., Cassetta, L., Masera, F., Cherubini, A., Corsonello, A., & Lattanzio, F. (2015) · International Psychogeriatrics · doi:10.1017/s104161021500040x · Cited by 28
“…the UPTECH sample are indeed consistent with those of the samples enrolled by other studies (both RCTs and cross-sectional studies) targeting patients with dementia (Coon et al., 2003; Sink et al., 2006; Black et al., 2013) and those with moderate AD (Wisniewski et al., 2003; Belle et al., 2006).”
ResultHolden, S. K., Sheffler, J., Stewart, R., Thompson, S., Persson, J., Finseth, T. A., Sillau, S., & Kluger, B. M. (2019) · Journal of Music Therapy · doi:10.1093/jmt/thz009 · Cited by 28
Parker, L. J., Gaugler, J. E., Samus, Q. M., & Gitlin, L. N. (2019) · Journal of the American Geriatrics Society · doi:10.1111/jgs.15995 · Cited by 27
“Further, being nonwhite, being less educated, and having increased depressive symptoms are factors associated with unmet need among familial caregivers for dementia-related support and healthcare.(8) Thus, identification of facilitators to promote self-care behaviors among dementia caregivers is critical as their care…”
BackgroundSelf-citationRobertshaw, D., & Cross, A. J. (2017) · Dementia · doi:10.1177/1471301217719991 · Cited by 27
“Recent drivers for Integrated Care in dementia include the implementation plan for the Prime Minister’s Challenge on Dementia 2020, which set out requirements for improved diagnosis, support, independence, continuity of care and advanced care planning (Department of Health, 2015b). The National Institute for Health an…”
BackgroundInfluentialKoh, W. Q., Heins, P., Flynn, A., Asl, A. M., Garcia, L., Malinowsky, C. W., & Brorsson, A. (2022) · Disability and Rehabilitation Assistive Technology · doi:10.1080/17483107.2022.2111610 · Cited by 26
“Moreover, the functions of socially assistive technologies do not always align with the occupational needs of PLWD [26,27,66,67].”
BackgroundStein, J., Pabst, A., Luck, T., Lühmann, D., Heser, K., Jessen, F., Bickel, H., Mösch, E., Pentzek, M., Fuchs, Â., et al. (2017) · Dementia and Geriatric Cognitive Disorders · doi:10.1159/000478850 · Cited by 26
Farina, N., Hicks, B., Baxter, K., Birks, Y. F., Brayne, C., Dangoor, M., Dixon, J., Harris, P. R., Hu, B., Knapp, M. R. J., et al. (2019) · International Journal of Geriatric Psychiatry · doi:10.1002/gps.5246 · Cited by 32
“However, existing studies largely focus on healthcare(6,7,9) and are cross-sectional.(2,5) A small number of qualitative studies identify barriers to accessing dementia care, including poor knowledge, poor/inappropriate service provision and impact of cultural beliefs and previous experiences.”
BackgroundClinical Care and Unmet Needs of Individuals With Dementia With Lewy Bodies and Caregivers
Armstrong, M. J., Bedenfield, N., Slande Alliance, Majid, T., Taylor, A., Kurasz, A. M., Patel, B., & Smith, G. E. (2021) · Alzheimer Disease & Associated Disorders · doi:10.1097/wad.0000000000000459 · Cited by 25
A Systematic Review of the Needs of Dementia Caregivers Across Care Settings
Mueller, A. E., Thao, L. M., Condon, O., Liebzeit, D., & Fields, B. (2021) · Home Health Care Management & Practice · doi:10.1177/10848223211056928 · Cited by 25
Dementia and cognitive decline A review of the evidence
Ray, S., & Davidson, S. A. (2014) · Cited by 24
Cova, I., Travi, N., Maggiore, L., Cucumo, V., Mariani, C. B., & Pomati, S. (2018) · Neurological Sciences · doi:10.1007/s10072-018-3332-3 · Cited by 25
Impact of diagnosed (vs undiagnosed) dementia on family caregiving experiences
Burgdorf, J. G., & Amjad, H. (2023) · Journal of the American Geriatrics Society · doi:10.1111/jgs.18155 · Cited by 24
“Most ADRD caregivers report unmet needs for education and resource referrals.(8,28) In the present study, formal diagnosis was associated with greater odds of receiving provider-led training, a key component of increasing ADRD caregiver TABLE 1 Characteristics of community-living older adults with probable dementia an…”
BackgroundSocioeconomic inequality of long-term care for older people with and without dementia in England
Hu, B., Read, S., Wittenberg, R., Brimblecombe, N., Rodrigues, R., Banerjee, S., Dixon, J., Robinson, L. A., Rehill, A., & Fernández, J. (2022) · Ageing and Society · doi:10.1017/s0144686x22000885 · Cited by 24
“Studies in the United States of America (USA) show that a lower income was associated with a higher level of unmet needs in people with dementia (Black et al ., 2013, 2019).”
Samus, Q. M., Amjad, H., Johnston, D. M., Black, B. S., Bartels, S. J., & Lyketsos, C. G. (2015) · American Journal of Geriatric Psychiatry · doi:10.1016/j.jagp.2015.01.005 · Cited by 24
Self-citationMahomed, A., & Pretorius, C. (2022) · Dementia · doi:10.1177/14713012221118441 · Cited by 25
Zhang, J., Xu, X., Yang, L., & Wang, J. (2020) · Geriatrics and gerontology international/Geriatrics & gerontology international · doi:10.1111/ggi.14093 · Cited by 23
Leroi, I., Wolski, L., Charalambous, A. P., Constantinidou, F., David, R., Dawes, P., Hann, M., Himmelsbach, I., Miah, J., Payne, M., et al. (2021) · Disability and Rehabilitation · doi:10.1080/09638288.2021.1923071 · Cited by 23
Samus, Q. M., Davis, K. C., Willink, A., Black, B. S., Reuland, M., Leoutsakos, J., Roth, D. L., Wolff, J. L., Gitlin, L. N., Lyketsos, C. G., et al. (2017) · International Journal of Care Coordination · doi:10.1177/2053434517744071 · Cited by 24
“0.(35,46); MMSE: Mini-Mental State Exam(48); NPI:”
Self-citationChan, E., Lim, Z.-X., Ding, Y.-Y., Chan, Y., & Lim, W. (2019) · The Journal of Nutrition, Health & Aging · doi:10.1007/s12603-019-1197-7 · Cited by 20
Health-care Workforce Training to Effectively Support Family Caregivers of Seniors in Care
Fisher, R., Parmar, J., Duggleby, W., Tian, P. G. J., Janzen, W., Anderson, S. D., & Brémault‐Phillips, S. (2020) · Canadian Geriatrics Journal · doi:10.5770/cgj.23.384 · Cited by 24
Fæø, S. E., Tranvåg, O., Samdal, R., Husebo, B. S., & Bruvik, F. K. (2020) · BMC Health Services Research · doi:10.1186/s12913-020-05913-z · Cited by 22
Shata, Z. N., Amin, M. R., Kady, H. M. E., & Abu-Nazel, M. W. (2017) · PubMed Central · doi:10.4103/2231-0770.203610 · Cited by 21
“Studies that assessed the needs of caregivers of PWD highlighted their needs to attain better knowledge about the disease, the ways of handling cognitive and behavioral problems of PWD, as well as psychological support needs such as stress management and emotional expression skills.[13,14] In Egypt, many of the older…”
Background
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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