TY - JOUR
T1 - Unmet needs in community-living persons with dementia are common, often non-medical and related to patient and caregiver characteristics
AU - Black, Betty S.
AU - Johnston, Deirdre
AU - Leoutsakos, Jeannie
AU - Reuland, Melissa
AU - Kelly, Jill
AU - Amjad, Halima
AU - Davis, Karen
AU - Willink, Amber
AU - Sloan, Danetta
AU - Lyketsos, Constantine
AU - Samus, Quincy M.
N1 - Funding Information:
Betty S. Black, PhD: grant support from NIA, CMS, DOD; Deirdre Johnston, MB, BCh: grant support from NIA, CMS; Jeannie Leoutsakos, PhD: grant support from NIA, CMS; Jill Kelly, MD: grant support from NIA, CMS; Quincy M. Samus, PhD: funding support from NIH, CMS, Weber Human Services. Melissa Reuland, MS; Halima Amjad, MD; Amber Willink, PhD; Karen Davis, PhD; Danetta Sloane, PhD; and Constantine Lyketsos, MD, MHS, have no conflicts of interest to declare.
Funding Information:
This study was supported by a Health Care Innovation Award Round Two demonstration project sponsored by the Centers for Medicare and Medicaid Services (1C1CMS331332, 09/01/2014-11/30/2017, NCT02395731), and by a grant from the National Institute on Aging (R01 AG046274, 08/15/2014-04/30/2019, NCT02396082). The funding sources had no involvement in the study design, collection, analysis or interpretation of data, writing of the report or the decision to submit the article for publication.
Funding Information:
Cross-sectional, baseline data from two intervention studies evaluating the impact of the Maximizing Independence at Home (MIND at Home) dementia care coordination program (Samus et al. , 2014 ) were combined to determine the percentage of community-residing PWD who have dementia-related unmet needs and the correlates of their unmet needs. The MIND-HCIA is a Health Care Innovation Award (HCIA) Round Two demonstration project sponsored by the Centers for Medicare and Medicaid Services (1C1CMS331332, 09/01/2014-11/30/2017, NCT02395731) ( n = 342), and MIND-RCT is a randomized controlled trial (RCT) funded by the National Institute on Aging (NIA) (R01 AG046274, 08/15/2014-04/30/2019, NCT02396082) ( n = 304). See Table S1 , published as supplementary material attached to the electronic version of this paper, for a comparison of MIND-HCIA and MIND-RCT study designs and methods. Further protocol details are described elsewhere (Samus et al. , 2017 , 2018 ). Both studies were approved by the Johns Hopkins Medicine Institutional Review Board (IRB). Written consent was obtained from all participants and their study partners (i.e., a reliable family member or friend who knew the participant well) or informal caregiver. For participants who lacked consent capacity, proxy consent was obtained from a legally authorized representative using the Maryland Health Care Decisions Act as a guide, with assent obtained from the participant.
Publisher Copyright:
© International Psychogeriatric Association 2019.
PY - 2019/11/1
Y1 - 2019/11/1
N2 - Objective: Understanding which characteristics of persons with dementia (PWD) and their caregivers are associated with unmet needs can inform strategies to address those needs. Our purpose was to determine the percentage of PWD having unmet needs and significant correlates of unmet needs in PWD.Design: Cross-sectional data were analyzed using bivariate and hierarchical multiple linear regression analyses.Setting: Participants lived in the greater Baltimore, Maryland and Washington DC suburban area.Participants: A sample of 646 community-living PWD and their informal caregivers participated in an in-home assessment of dementia-related needs.Measurements: Unmet needs were identified using the Johns Hopkins Dementia Care Needs Assessment. Correlates of unmet needs were determined using demographic, socioeconomic, clinical, functional and quality of life characteristics of the PWD and their caregivers.Results: PWD had a mean of 10.6 (±4.8) unmet needs out of 43 items (24.8%). Unmet needs were most common in Home/Personal Safety (97.4%), General Health Care (83.1%), and Daily Activities (73.2%) domains. Higher unmet needs were significantly related to non-white race, lower education, higher cognitive function, more neuropsychiatric symptoms, lower quality of life in PWD, and having caregivers with lower education or who spent fewer hours/week with the PWD.Conclusions: Unmet needs are common in community-living PWD, and most are non-medical. Home-based dementia care can identify and address PWD's unmet needs by focusing on care recipients and caregivers to enable PWD to remain safely at home.
AB - Objective: Understanding which characteristics of persons with dementia (PWD) and their caregivers are associated with unmet needs can inform strategies to address those needs. Our purpose was to determine the percentage of PWD having unmet needs and significant correlates of unmet needs in PWD.Design: Cross-sectional data were analyzed using bivariate and hierarchical multiple linear regression analyses.Setting: Participants lived in the greater Baltimore, Maryland and Washington DC suburban area.Participants: A sample of 646 community-living PWD and their informal caregivers participated in an in-home assessment of dementia-related needs.Measurements: Unmet needs were identified using the Johns Hopkins Dementia Care Needs Assessment. Correlates of unmet needs were determined using demographic, socioeconomic, clinical, functional and quality of life characteristics of the PWD and their caregivers.Results: PWD had a mean of 10.6 (±4.8) unmet needs out of 43 items (24.8%). Unmet needs were most common in Home/Personal Safety (97.4%), General Health Care (83.1%), and Daily Activities (73.2%) domains. Higher unmet needs were significantly related to non-white race, lower education, higher cognitive function, more neuropsychiatric symptoms, lower quality of life in PWD, and having caregivers with lower education or who spent fewer hours/week with the PWD.Conclusions: Unmet needs are common in community-living PWD, and most are non-medical. Home-based dementia care can identify and address PWD's unmet needs by focusing on care recipients and caregivers to enable PWD to remain safely at home.
KW - care recipients
KW - caregivers
KW - community-living
KW - dementia
KW - unmet needs
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U2 - 10.1017/S1041610218002296
DO - 10.1017/S1041610218002296
M3 - Article
C2 - 30714564
AN - SCOPUS:85061094928
SN - 1041-6102
VL - 31
SP - 1643
EP - 1654
JO - International psychogeriatrics
JF - International psychogeriatrics
IS - 11
ER -