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Clinically significant changes in burden and depression among dementia caregivers following nursing home admission

Gaugler, Joseph E; Mittelman, Mary S; Hepburn, Kenneth; Newcomer, Robert
BACKGROUND: Although extensive research exists on informal long-term care, little work has examined the clinical significance of transitions in family caregiving due to a lack of established clinical cut-points on key measures. The objectives of this study were to determine whether clinically significant changes in symptoms of burden and depression occur among caregivers within 12 months of nursing home admission (NHA) of their relatives with dementia, and to identify key predictors of clinically persistent burden and depression in the first year after institutionalization. METHODS: Secondary longitudinal analysis of dementia caregivers were recruited from eight catchment areas in the United States with 6- and 12-month post-placement follow-up data. The sample included data on 1,610 dementia caregivers with pre- and six-month post-placement data and 1,116 with pre-placement, six-month, and 12-month post-placement data. Burden was measured with a modified version of the Zarit Burden Inventory. Depressive symptoms were assessed with the Geriatric Depression Scale. RESULTS: Chi-square analyses found significant (P < .05) reductions in the number of caregivers who reported clinically significant burden and depressive symptoms after NHA compared to pre-placement. Logistic regression models revealed that wives and daughters were most likely to experience clinically persistent burden and husbands were most likely to experience clinically significant depression after NHA. CONCLUSIONS: In addition to suggesting that clinically significant decreases in caregiver burden and depression are likely to occur following institutionalization, the results reveal particular subsets of caregivers who are at continued risk of distress. Such findings can facilitate development of screening processes to identify families at-risk following institutionalization.
PMCID:3012012
PMID: 21167022
ISSN: 1741-7015
CID: 655812

The process of family-centered counseling for caregivers of persons with dementia: barriers, facilitators and benefits

Vernooij-Dassen, Myrra; Joling, Karlijn; van Hout, Hein; Mittelman, Mary Sherman
BACKGROUND: Despite the high consistency of evidence in favor of person-centered care, little information is available on how person-centered and family-centered interventions are actually provided. The aim of this study is to gain insight into the provision of the effective New York University Caregiver Intervention (NYUCI) in order to enhance its implementation. METHODS: This is a qualitative study using a grounded theory approach. Group interviews were carried out with three purposefully sampled counselors who had provided the NYUCI. RESULTS: Six themes were identified: (1) family problems, (2) ways to deal with these family problems, (3) barriers encountered by counselors, (4) ways to deal with these barriers, (5) facilitators or rewards of being a counselor, and (6) perceived effectiveness.The problem categories were (a) conflicts within families; (b) past experiences and personality; and (c) daily living with dementia. Ways of helping caregivers deal with these problems included problem clarification from the perspectives of the key players. An important barrier was reluctance to be helped. This was dealt with by acknowledging caregivers' need for control over situations. Additional effects of participation in the NYUCI observed by the counselors were reduction of anger and awareness of more and new options for dealing with dementia. CONCLUSIONS: Person- or family-centered care offers new perspectives on problems that are seemingly unmanageable. We hypothesize that seeing new and more options is a direct effect of this person-centered counseling. This might be an important outcome to be measured in future studies.
PMID: 20226110
ISSN: 1041-6102
CID: 930532

Nursing home structure and association with agitation and use of psychotropic drugs in nursing home residents in three countries: Norway, Austria and England

Testad, I; Auer, S; Mittelman, M; Ballard, C; Fossey, J; Donabauer, Y; Aarsland, D
BACKGROUND: Understanding the underlying mechanisms and risk factors leading to agitation is crucial to reduce the severity of agitation and increase quality of life. International comparative studies offer special advantages in elucidating environmental risk factors by providing a wider diversity of environmental exposures such as nursing home structures, health care systems and genetic diversity. METHODS: Baseline data for three different intervention studies in Austria (n = 38), England (n = 302) and Norway (n = 163) were combined posthoc. Patients were grouped according to their dementia severity using the global deterioration scale (GDS), functional assessment staging (FAST) and clinical dementia rating (CDR) scales. For the measurement of agitation, the Cohen-Mansfield Agitation Inventory (CMAI) was used. Data analysis was performed using one-way ANOVA, multivariate and linear regression analysis. RESULTS: CMAI scores were available for 503 subjects with dementia. There were significant differences between the nursing home residents in the three countries regarding age, gender and dementia severity (all p values < 0.001). In the multivariate analyses, the level of agitation differed with higher mean scores in the Austrian (mean (SD) score 51.9(21.8)) compared to UK (43.3(16.1)) and Norwegian (41.6(13.2)) nursing homes (p = 0.002). Similarly, the use of psychotropic drugs differed significantly, with a higher proportion of neuroleptics in UK (48%, p < 0.001) and Austrian (52.6%; p = 0.001) compared to Norwegian (19%) nursing homes. CONCLUSION: We found differences in agitation and antipsychotic drug use which are likely related to structural and cultural differences in nursing homes in three European countries. These findings suggest that structural changes can improve quality of care and quality of life for nursing home residents.
PMID: 19823985
ISSN: 1099-1166
CID: 2504012

Patient death as a censoring event or competing risk event in models of nursing home placement

Szychowski, Jeff M; Roth, David L; Clay, Olivio J; Mittelman, Mary S
Participant death is often observed in studies that examine predictors of events, such as hospitalization or institutionalization, in older adult populations. The Cox proportional hazards modeling of the target event, whereby death is treated as a censoring event, is the standard analysis in this competing risks situation. However, the assumption of noninformative censoring applied to a frequently occurring competing event like death may be invalid and complicate interpretation in terms of the probability of the event. Multiple cause-specific hazard (CSH) models can be estimated, but ambiguities may arise when interpreting covariate effects across multiple CSH models and in terms of the cumulative incidence function (CIF). Alternatively, one can model the proportional hazards of the subdistribution of the CIF and evaluate the covariate effects on the CIF directly. We examine and compare these two approaches with nursing home (NH) placement data from a randomized controlled trial of a counseling and support intervention for spouse-caregivers of patients with Alzheimer's disease. CSHs for NH placement (where death is treated as a censoring event) and death (where NH placement is treated as a censoring event) and subdistribution hazards of the CIF for NH placement are modeled separately. In the presence of multiple covariates, the intervention effect is significant in both approaches, but the interpretation of the covariate effects requires joint evaluation of all estimated models
PMCID:2811964
PMID: 20014354
ISSN: 1097-0258
CID: 134361

Transcultural influences in dementia care: observations from a psychosocial intervention study

Burns, Alistair; Mittelman, Mary; Cole, Catherine; Morris, Julie; Winter, Jane; Page, Sean; Brodaty, Henry
BACKGROUND: Various models of intervention for caregivers of patients with dementia have been described. There has been little direct comparison of cultural differences between countries and the effect any differences may exert on the outcome of caregiver interventions. AIMS: The aims of the three-country study (USA, Australia and the UK) were to assess whether caregiver interventions can still be successful when anti-dementia drugs are provided to patients, and whether a caregiver intervention can be successfully implemented using the same methods in three different English-speaking countries. In this paper, the cultural differences and similarities between the three countries are examined. METHOD: Randomised, controlled trial involving 158 patients and their caregivers (divided equally across three centres, New York, Sydney and Manchester) with all the patients receiving donepezil and the caregivers randomised to a caregiver intervention or treatment as usual. RESULTS: There were few differences between countries in the main outcome measures, and no differences between the treatment-as-usual group and the intervention, but interesting cultural nuances were observed between groups. Despite these differences, the caregiver intervention was associated with positive results on caregiver depression across all the countries. CONCLUSIONS: This first multinational carer intervention study has emphasised the similarities between the three countries whilst highlighting crucial differences which may be important when planning cross-cultural studies in the future. The positive results achieved on caregiver depression were replicated across the three centres
PMID: 21071943
ISSN: 1421-9824
CID: 138188

Nonpharmacological therapies in Alzheimer's disease: a systematic review of efficacy

Olazaran, Javier; Reisberg, Barry; Clare, Linda; Cruz, Isabel; Pena-Casanova, Jordi; Del Ser, Teodoro; Woods, Bob; Beck, Cornelia; Auer, Stefanie; Lai, Claudia; Spector, Aimee; Fazio, Sam; Bond, John; Kivipelto, Miia; Brodaty, Henry; Rojo, Jose Manuel; Collins, Helen; Teri, Linda; Mittelman, Mary; Orrell, Martin; Feldman, Howard H; Muniz, Ruben
INTRODUCTION: Nonpharmacological therapies (NPTs) can improve the quality of life (QoL) of people with Alzheimer's disease (AD) and their carers. The objective of this study was to evaluate the best evidence on the effects of NPTs in AD and related disorders (ADRD) by performing a systematic review and meta-analysis of the entire field. METHODS: Existing reviews and major electronic databases were searched for randomized controlled trials (RCTs). The deadline for study inclusion was September 15, 2008. Intervention categories and outcome domains were predefined by consensus. Two researchers working together detected 1,313 candidate studies of which 179 RCTs belonging to 26 intervention categories were selected. Cognitive deterioration had to be documented in all participants, and degenerative etiology (indicating dementia) had to be present or presumed in at least 80% of the subjects. Evidence tables, meta-analysis and summaries of results were elaborated by the first author and reviewed by author subgroups. Methods for rating level of evidence and grading practice recommendations were adapted from the Oxford Center for Evidence-Based Medicine. RESULTS: Grade A treatment recommendation was achieved for institutionalization delay (multicomponent interventions for the caregiver, CG). Grade B recommendation was reached for the person with dementia (PWD) for: improvement in cognition (cognitive training, cognitive stimulation, multicomponent interventions for the PWD); activities of daily living (ADL) (ADL training, multicomponent interventions for the PWD); behavior (cognitive stimulation, multicomponent interventions for the PWD, behavioral interventions, professional CG training); mood (multicomponent interventions for the PWD); QoL (multicomponent interventions for PWD and CG) and restraint prevention (professional CG training); for the CG, grade B was also reached for: CG mood (CG education, CG support, multicomponent interventions for the CG); CG psychological well-being (cognitive stimulation, multicomponent interventions for the CG); CG QoL (multicomponent interventions for PWD and CG). CONCLUSION: NPTs emerge as a useful, versatile and potentially cost-effective approach to improve outcomes and QoL in ADRD for both the PWD and CG
PMID: 20838046
ISSN: 1421-9824
CID: 138218

CONSTRUCTING A PROGNOSTIC TOOL TO IDENTIFY CAREGIVERS AT RISK FOR PSYCHOSOCIAL DISTRESS AFTER NURSING HOME ADMISSION [Meeting Abstract]

Gaugler, J; Mittelman, MS; Hepburn, K; Newcomer, R
ISI:000271794100097
ISSN: 0016-9013
CID: 106964

THE NYU CAREGIVER INTERVENTION, THE ORIGINAL STUDY AND ISSUES IN EARLY TRANSLATIONS IN DIVERSE COMMUNITY SETTINGS [Meeting Abstract]

Mittelman, MS; Epstein, C
ISI:000271794100885
ISSN: 0016-9013
CID: 106965

The effects of counseling spouse caregivers of people with Alzheimer disease taking donepezil and of country of residence on rates of admission to nursing homes and mortality

Brodaty, Henry; Mittelman, Mary; Gibson, Louisa; Seeher, Katrin; Burns, Alistair
OBJECTIVE:Does psychosocial intervention for caregivers whose spouses with Alzheimer disease (AD) are taking donepezil delay nursing home (NH) placement or death of patients? DESIGN/METHODS:Randomized controlled trial with 2 years of active treatment and up to 8.5 years of follow-up (mean: 5.4 years, SD: 2.4). SETTING/METHODS:Outpatients of research clinics in Australia, the United Kingdom, and the United States. PARTICIPANTS/METHODS:One hundred and fifty-five persons with AD and their spouses. INTERVENTION/METHODS:Five sessions of individual and family counseling (+ prn ad hoc counseling) or usual care. MEASUREMENTS/METHODS:Time to institutionalization and death using Cox proportional hazards methods. RESULTS:Over a mean of 5.4 years (SD: 2.4), there were no differences in NH placement or mortality by intervention group, but there were by country, with Australian patients admitted to NHs earlier than U.S. than U.K. patients. CONCLUSION/CONCLUSIONS:Earlier NH admission of Australian compared to U.K. and U.S. subjects may be due to differences in health care, NH systems, availability, and affordability.
PMCID:2738999
PMID: 19705519
ISSN: 1545-7214
CID: 3890202

Predictors of change in caregiver burden and depressive symptoms following nursing home admission

Gaugler, Joseph E; Mittelman, Mary S; Hepburn, Kenneth; Newcomer, Robert
Prior research has yielded discrepant findings regarding change in caregiver burden or depressive symptoms after institutionalization of persons with dementia. However, earlier studies often included small postplacement samples. In samples of 1,610 and 1,116 dementia caregivers with up to 6 months' and 12 months' postplacement data, respectively, this study identified predictors of change in caregiver burden and depressive symptoms following nursing home admission. Descriptive analyses found that caregivers reported significant and considerable decreases in burden in the 6- and 12-month postplacement panels. A number of variables predicted increased burden and depressive symptoms in the 6- and 12-month postplacement panels. Preplacement measures of burden and depressive symptoms, site (Florida), overnight hospital use, and spousal relationship appear to result in impaired caregiver well-being following nursing home admission. Incorporating more specific measures of stress, considering the influence of health-related transitions, and coordinating clinical strategies that balance caregivers' needs for placement with sustainability of at-home care are important challenges for future research.
PMCID:2699253
PMID: 19485656
ISSN: 0882-7974
CID: 3890112