A randomized trial of family caregiver support in the home management of dementia. A family intervention to delay nursing home placement of patients with Alzheimer disease. A randomized controlled trial. An intervention that delays institutionalization of Alzheimer's disease patients: treatment of spouse-caregivers. Effects of the Medicare Alzheimer's Disease Demonstration on nursing home entry. Burden of Alzheimer's Disease: Helping the Patient and Caregiver Effects of the Medicare Alzheimer's Disease Demonstration on the use of community-based services. Comparison of risperidone and placebo for psychosis and behavioral disturbances associated with dementia: a randomized, double-blind trial. Risperidone Study Group. Education to assist spouses in coping with Alzheimer's disease. A controlled trial. Successful behavioral treatment for reported sleep problems in elderly caregivers of dementia patients: a controlled study. Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. Do memory clinics improve the quality of life of carers? A randomized pilot trial. A randomized trial of risperidone, placebo, and haloperidol for behavioral symptoms of dementia Effects of the Medicare Alzheimer's Disease Demonstration on caregiver burden and depression. Reducing caregiver burden: a randomized psychoeducational intervention for caregivers of persons with dementia. Behavioral symptoms in Alzheimer's disease: phenomenology and treatment. A comprehensive support program: effect on depression in spouse-caregivers of AD patients. Psychiatric Complications of Dementia: Impact on Caregivers
A r and omized trial of family caregiver support for the home management of older people suffering from moderate to severe progressive irreversible dementia was conducted in an urban center in southern Ontario . Thirty caregivers were allocated to receive the experimental intervention consisting of : caregiver-focused health care , education about dementia and caregiving , assistance with problem solving , regularly scheduled in-home respite , and a self-help family caregiver support group .  Thirty control subjects received conventional community nursing care . Before completion of the intervention , 18 ( 30 % ) were withdrawn , almost equally from each group . The most frequent reason was long-term institutionalization of the demented relative ( n = 10 ) . At baseline , caregivers in both groups were suffering from above-average levels of depression and anxiety . After the six-month intervention period , we found neither experimental nor control group improved in these areas . However , the experimental group showed a clinical ly important improvement in quality of life , experienced a slightly longer mean time to long-term institutionalization , found the caregiver role less problematic , and had greater satisfaction with nursing care than the control group OBJECTIVE To determine the long-term effectiveness of comprehensive support and counseling for spouse-caregivers and families  in postponing or preventing nursing home placement of patients with Alzheimer disease ( AD ) . DESIGN R and omized controlled intervention study . SETTING Outpatient research clinic in the New York City metropolitan area . PARTICIPANTS Referred , volunteer sample of 206 spouse-caregivers of AD patients who enrolled in the study during a 3 1/2-year period . All patients were living at home at baseline and had at least 1 relative living in the area . INTERVENTION Caregivers in the treatment group were provided with 6 sessions of individual and family counseling within 4 months of enrollment in the study and were required to join support groups . In addition , counselors were available for further counseling at any time . MAIN OUTCOME MEASURE Time from enrollment of caregivers in the study to placement of the AD patients in a nursing home . RESULTS Using Kaplan-Meier survival analysis , we estimated that the median time ( weighted average of estimates for male and female caregivers ) from baseline to nursing home placement of AD patients was 329 days longer in the treatment group than in the control group ( z=2.29 ; P=.02 ) . The relative risk ( RR ) from a Cox proportional hazard model of nursing home placement ( intent-to-treat estimate ) after adjusting for caregiver sex , patient age , and patient income was 0.65 ( 95 % confidence interval [ CI ] , 0.45 to 0.94 ; P=.02 ) , indicating that caregivers were approximately two thirds as likely to place their spouses in nursing homes at any point in time if they were in the treatment group than if they were in the control group . Treatment had the greatest effect on risk of placement for patients who were mildly demented ( RR , 0.18 ; 95 % CI , 0.04 to 0.77 ) or moderately demented ( RR , 0.38 ; 95 % CI , 0.17 to 0.82 ) . CONCLUSIONS A program of counseling and support can substantially increase the time  spouse-caregivers are able to care for AD patients at home , particularly during the early to middle stages of dementia when nursing home placement is generally least appropriate Spouse-caregivers of Alzheimer 's disease patients were r and omly assigned to either a treatment group ( individual and family counseling , support group participation , and ad hoc consultation ) or a control group ( only routine support ) . In the first year after intake , the treatment group had less than half as many nursing home placements as the control group . This suggests that a comprehensive counseling program can reduce the socioeconomic impact of Alzheimer 's disease . Nursing home placement also was affected by the patient 's need for assistance with activities of daily living , patient income , and the age of the patients and caregivers STUDY QUESTION Did the  Medicare Alzheimer 's Disease Demonstration , with its goal of improving caregiver outcomes through case management and subsidized community services , affect the nursing home entry rate of treatments with dementia compared to controls ? DATA SOURCES Interviews conducted at baseline and six months thereafter . Measures include date of nursing home entry , client and caregiver health , and income . STUDY DESIGN The demonstration r and omly assigned voluntary applicants into treatment and control groups . Treatment group cases were eligible for case management and for an 80 percent discount on community care benefits , up to about $ 600 per month . DATA COLLECTION All cases received baseline and semi-annual assessment interviews for up to three years after enrollment . Analyses are among cases that remained in the demonstration for more than 30 days after enrollment ( n = 8,095 ) . PRINCIPAL FINDINGS The intervention of case management and subsidized community service had no effect on nursing home entry rates for treatments overall , compared to those of controls , and few effects on treatment subgroups , with the exception of one site where it may have increased nursing home entry rates . CONCLUSIONS Providing case management and subsidized community services with the goal of improving caregiver outcomes may have little effect on nursing home entry rates for people with dementia The burden associated with caring for a patient with dementia is well documented . There are many conflicting data on the factors that cause  caregiver burden . Historically , studies in this area have tended to focus on deficits in the patient and the burden and distress they cause the caregiver . More recently , it has been acknowledged that care givers ' own characteristics may play a major role in determining how burdensome and stressful they find their role . These characteristics include such things as gender , availability of support systems , and relationship to patient , as well as the way the caregiver perceives the patient 's symptoms ( whether illness related or deliberate ) and his or her attitude and behavior toward the patient . Underst and ing the origins of caregiver burden has broad implica tions both in terms of the well-being of caregivers and the quality of support that patients receive . The Manchester Carer 's Project , which is described here , seeks to identify the origins and management of caregiver burden . ( J Geriatr Psychiatry Neurol 1999 ; 12:21 - 28 ) STUDY QUESTION Did the  Medicare Alzheimer 's Disease Demonstration with its case management and community service waivers affect the use of community-based long-term care services among people with dementia and their primary caregivers ? DATA SOURCES Baseline and periodic caregiver interviews . Measures include client and caregiver attributes and self-reported service use . STUDY DESIGN The demonstration r and omly assigned voluntary applicants into treatment and control groups . Treatment group cases were eligible for case management  and for up to $ 699 per month in community care benefits . The actual monthly entitlement varied among the eight demonstration communities due to regional cost and inflation adjustments over time . Analyses are for the year after enrollment . DATA COLLECTION Analyses are of cases surviving six months or more in the community after enrollment ( n = 5,209 ) . Cases received baseline and semi-annual assessment s. PRINCIPAL FINDINGS The intervention of case management and community service reimbursement had a strong , consistent , and positive effect on the likelihood of using home care ( including homemaker/chore services , personal care services , companion services ) and adult day care . Treatment group clients were at least twice as likely as control group clients to be using any of the four community-based services . A similar , but less pervasive effect was achieved with caregiver training and support group participation . Reimbursement provided by the demonstration 's Medicare waiver was generally not sufficient to exceed the level of control group service acquired through private payment . CONCLUSIONS Reimbursement levels within the demonstration may have enabled more individuals to purchase some services , but they were not sufficient to increase the average level of use over those in the control group . No consistent differences between demonstration models were found in service use likelihood or average use among users BACKGROUND We report the findings from the first large , double-blind , placebo-controlled study conducted to evaluate the efficacy and safety of risperidone in the treatment of psychotic and behavioral symptoms in institutionalized elderly patients with dementia . METHOD 625 patients ( 67.8 % women ; mean age = 82.7 years ) with DSM-IV diagnoses of Alzheimer 's disease ( 73 % ) , vascular dementia ( 15 % ) , or mixed dementia ( 12 % ) and significant psychotic and behavioral symptoms were included . Each patient was r and omly assigned to receive placebo or 0.5 mg/day , 1 mg/day , or 2 mg/day of risperidone for 12 weeks . The primary outcome measure was the Behavioral Pathology in Alzheimer 's Disease rating scale ( BEHAVE-AD ) . RESULTS The study was completed by 70 % of the patients . Baseline Functional Assessment Staging scores were 6 or 7 in more than 95 % of the patients , indicating severe dementia . At endpoint , significantly greater reductions in BEHAVE-AD total scores and psychosis and aggressiveness subscale scores were seen in patients receiving 1 and 2 mg/day of risperidone than in placebo patients ( p = .005 and p < .001 , respectively ) . At week 12 , 0.5 mg/day of risperidone was superior to placebo in reducing BEHAVE-AD aggression scores ( p = .02 ) . More adverse events were reported by patients receiving 2 mg/day of risperidone than 1 mg/day . The most common dose-related adverse events were extrapyramidal symptoms , somnolence , and mild peripheral edema . The frequency of extrapyramidal symptoms in patients receiving 1 mg/day of risperidone was not significantly greater than in placebo patients . CONCLUSION Risperidone significantly improved symptoms of psychosis and aggressive behavior in patients with severe dementia . Results show that 1 mg/day of risperidone is an appropriate dose for most elderly patients with dementia This study investigates whether a brief educational program , provided to spouses of patients with Alzheimer 's disease , improved the caregivers ' coping skills ; it also questions whether the gender of the spouse had an effect on coping ability . The sample consisted of 40 spouses who were caring for the Alzheimer patient at home , 20 who participated in the educational program , and 20 controls .  The instrument used for the study was the Health Specific Family Coping Index ( HSFCI ) . This instrument provided a quantitative assessment of overall family coping with both potential and actual health problems in the psychosocial and physical domains of health . It is rated in nine domains : physical independence , therapeutic competence , knowledge of the condition , application of principles of personal hygiene , attitude toward health care , emotional competence , family living patterns , physical environment , and use of community re sources . A home visit was made by a registered nurse prior to the educational intervention and at the end of the four-week intervention period . The HSFCI was completed at each visit . There were no pretreatment differences between the intervention and control groups in coping ability . Findings indicate that the educational program was beneficial in assisting spouses to feel greater competence in the face of the disease process and to function with greater independence . In the treatment group , the greatest significant increase was in the knowledge domain , followed by therapeutic competence and emotional competence . There was no overall relationship between gender of the spouse and coping ability Although sleep problems are common among dementia caregivers , there has been no research thus far describing treatment of such problems using behavioral techniques . In this study , 36 elderly dementia caregivers with disturbed sleep were r and omly assigned to either a brief behavioral intervention or a wait list control . The active treatment consisted of st and ard sleep hygiene , stimulus control , and sleep compression strategies as well as education about community re sources , stress management , and techniques to reduce patient disruptive behaviors . Caregivers in active treatment showed significant improvements in sleep at post-treatment and 3-month follow up . No significant differences between groups were observed for caregiver mood , burden , or patient behavior problems , suggesting that sleep improvements were not an artifact of depression treatment . Treatment responders tended to be younger and more compliant with treatment recommendations than non-responders . Results suggest that behavioral techniques may well be a viable alternative to medication for sleep problems in aging caregivers CONTEXT There is strong consensus that caring for an elderly individual with disability is burdensome and stressful to many family members and contributes to psychiatric morbidity . Research ers have also suggested that the combination of loss , prolonged distress , the physical dem and s of caregiving , and biological vulnerabilities of older caregivers may compromise their physiological functioning and increase their risk for physical health problems , leading to increased mortality . OBJECTIVE To examine the relationship between caregiving dem and s among older spousal caregivers and 4-year all-cause mortality , controlling for sociodemographic factors , prevalent clinical disease , and sub clinical disease at baseline . DESIGN Prospect i ve population -based cohort study , from 1993 through 1998 with an average of 4.5 years of follow-up . SETTING Four US communities . PARTICIPANTS A total of 392 caregivers and 427 noncaregivers aged 66 to 96 years who were living with their spouses . MAIN OUTCOME MEASURE Four-year mortality , based on level of caregiving : ( 1 ) spouse not disabled ; ( 2 ) spouse disabled and not helping ; ( 3 ) spouse disabled and helping with no strain reported ; or(4 ) spouse disabled and helping with mental or emotional strain  reported . RESULTS After 4 years of follow-up , 103 participants ( 12.6 % ) died . After adjusting for sociodemographic factors , prevalent disease , and sub clinical cardiovascular disease , participants who were providing care and experiencing caregiver strain had mortality risks that were 63 % higher than noncaregiving controls ( relative risk [ RR ] , 1.63 ; 95 % confidence interval [ CI ] , 1.00 - 2.65 ) . Participants who were providing care but not experiencing strain ( RR , 1.08 ; 95 % CI , 0.61 - 1.90 ) and those with a disabled spouse who were not providing care ( RR , 1.37 ; 95 % CI , 0.73 - 2.58 ) did not have elevated adjusted mortality rates relative to the noncaregiving controls . CONCLUSIONS Our study suggests that being a caregiver who is experiencing mental or emotional strain is an independent risk factor for mortality  among elderly spousal caregivers . Caregivers who report strain associated with caregiving are more likely to die than noncaregiving controls OBJECTIVE To determine the effects of attendance at a memory clinic on the psychosocial health of carers .  DESIGN R and omized control trial . PARTICIPANTS Fifty community dwelling subjects with mild to moderate dementia and their carers . MAIN OUTCOME MEASURES Carer burden , psychological morbidity and psychosocial health related quality of life at 6 and 12 months post intervention . MAIN RESULTS There was significant improvement in psychosocial health related quality of life of carers as measured by the psychosocial domain of the Functional Limitation Profile ( FLP ) at 6 months ( p < 0.01 ) , including improvement in the subgroups of alertness behaviour ( p < 0.05 ) and social interaction ( p < 0.01 ) , after adjustment for age of subject and baseline scores . The improvement in social interaction was maintained at 12 months ( p < 0.05 ) . There was no significant difference in carer psychological morbidity ( General Health Question naire ) , carer burden ( Zarit family interview ) or carer knowledge of dementia ( Dementia Knowledge Test ) at 6 or 12 months , between groups . CONCLUSIONS These results demonstrate improved psychosocial health related quality of life for carers of those with mild to moderate cognitive impairment attending a memory clinic .  Further research in this area is indicated , comparing memory clinic intervention with alternative support Objective : To compare effects of risperidone with placebo  ( efficacy and tolerability ) and haloperidol ( tolerability ) for treating demented patients with aggression and other behavioral symptoms . Methods : A 13-week double-blind study involving 344 patients with dementia r and omly assigned to receive placebo or flexible doses ( 0.5 to 4 mg/d ) of risperidone or haloperidol . Behavioral symptoms were assessed by the Behavior Pathology in Alzheimer ’s Disease Rating Scale ( BEHAVE-AD ) , the Cohen-Mansfield Agitation Inventory ( CMAI ) , and the Clinical Global Impression ( CGI ) scale . Tolerability assessment s included the Extrapyramidal Symptom Rating Scale , sedation levels , Functional Assessment Staging , Mini-Mental State Examination , and incidence of adverse events . Results : The mean dose at endpoint was 1.1 mg/d of risperidone and 1.2 mg/d of haloperidol . Although not significant , a higher percentage of patients receiving risperidone than those receiving placebo showed clinical improvement ( ≥30 % reduction from baseline to endpoint in BEHAVE-AD total score ) at endpoint and week 12 . Reductions in the BEHAVE-AD total score were significantly greater with risperidone than with placebo at week 12 . In a further analysis of aggression , the most dominant symptom in these patients , BEHAVE-AD and CMAI aggression cluster scores were significantly reduced compared with placebo at endpoint and week 12 . CGI scores were also significantly reduced at endpoint and week 12 . Severity of extrapyramidal symptoms with risperidone did not differ significantly from that of placebo and was less than that of haloperidol . A post hoc analysis showed significantly greater reductions in the BEHAVE-AD aggressiveness score  with risperidone than haloperidol at week 12 . Conclusion : Low-dose risperidone ( mean 1.1 mg/d ) was well tolerated and associated with reductions in the severity and frequency of behavioral symptoms , particularly aggression , in elderly patients with dementia STUDY QUESTION Does improved access to community-based care reduce perceived burden and reported levels of depression among primary caregivers of people with dementia ? DATA SOURCES Baseline and periodic caregiver interviews with participants in the Medicare Alzheimer 's Disease Demonstration . Client and caregiver attributes and caregiver outcomes such as depression and burden scores were among the measures . STUDY DESIGN Applicants to the demonstration ( all voluntary ) were r and omly assigned into treatment and control groups . Treatment group cases were eligible for case management and for up to $ 699 per month in community care benefits . ( The actual monthly entitlement varied among the eight demonstration communities due to regional cost differences and inflation adjustments over the four-year demonstration period . ) DATA COLLECTION A total of 5,307 eligible individuals received a baseline assessment at the time of application to the demonstration and at least one semi-annual re assessment . Clients and their caregivers were periodically reassessed producing a total of 20,707 observations . PRINCIPAL FINDINGS Persons in the treatment group had a high exposure to case management and a greater likelihood of community service use relative to those in the control group . Treatment group membership was associated with statistically significant , but very small reductions in caregiver burden ( in four of eight sites ) and depression ( three of eight sites ) over a 36-month tracking period . These findings are not sustained with all cases combined , or among a higher-re source demonstration model considered separately . CONCLUSIONS Both the fact that these programmatic differences did not translate into substantial treatment group reductions in caregiver burden or depression , and the consistency of these findings with those of prior case management evaluations suggest the need to reformulate this programmatic intervention into areas not previously tested : 24-hour care , crisis intervention , coordination with primary care , or chronic disease management This 3-year r and omized clinical trial tested the effectiveness of an interdisciplinary psychoeducational family group intervention in decreasing the caregivers ' perceptions of the frequency and severity of behavioral problems in persons with dementia and their reactions to those problems , and in decreasing caregiver burden and depression . The intervention consisted of seven weekly , 2-hour multimedia training sessions that included education , family support , and skills training for 94 primary caregivers and their families . Repeated measures ANOVA was used to test for significant differences between the intervention and waiting list control groups over a 5-month period . The intervention was successful in reducing caregivers ' negative reactions to disruptive behaviors and in reducing caregiver burden over time Limited information is available regarding the incidence , nature , and treatment of behavioral problems in Alzheimer 's disease ( AD ) . A chart review of 57 out patients with a diagnosis of AD was conducted to examine these issues . Thirty-three ( 58 % ) patients had significant behavioral symptomatology  ( most commonly delusions , nonspecific agitation , and diurnal rhythm disturbances ) . Twenty-seven were treated with thioridazine ( 10 - 250 mg/day ) , 15 ( 55.6 % ) of whom were judged to have a positive response ( mean maximum dose = 55 mg/day ) . Information regarding the characteristic phenomenology of the behavioral symptoms studied was used to design a clinical rating instrument for AD patients , the Behavioral Pathology in Alzheimer 's Disease Rating Scale ( BEHAVE-AD ) , which should be useful in prospect i ve studies of behavioral symptoms as well as in pharmacologic trials Caregivers of Alzheimer 's disease patients often suffer from depression . Using a longitudinal treatment/control study , we examined the effects of a comprehensive support program on  depression in spouse-caregivers . This psychosocial intervention program treats the primary caregiver and family members over the entire course of the disease through individual and family counseling , the continuous availability of ad hoc counseling , and support group participation . In the first year after intake , the control group became increasingly more depressed , whereas the treatment group remained stable . By the eighth month , treated caregivers were significantly less depressed than those in the control group . These results suggest that enhancing long-term social support can have a significant impact on depression in caregivers This study was design ed to determine the relationship between psychiatric features of dementia and their impact on caregivers . 35 patient-caregiver pairs were evaluated at two university-affiliated dementia clinics , using st and ard instruments to rate patient psychiatric features and caregiver burden and depression . There were highly significant correlations between patient agitation and both caregiver burden ( r = 0.59 , p = 0.0002 ) and depression ( r = 61 , p = 0.0001 ) . These associations remained significant after adjusting for multiple demographic and dementia variables . There was no significant association between patient delusions , hallucinations , or depression and caregiver burden or depression . Agitation , particularly physical aggression , may impact caregivers even more than does the cognitive status of the demented patient
This systematic review of the literature focuses on the influence of ethnic , cultural , and geographic factors on the caregivers of patients with dementia .
In particular , we explore the impact of cultural expectations on five important questions : 1 ) Do the characteristics of dementia affect caregiver burden ?
2 ) Do characteristics of the caregiver independently predict burden ?
3 ) Does the caregiver affect patient outcomes ?
4 ) Does support or intervention for caregiver result in reduced caregiver burden or improved patient outcomes ?
5 ) Finally , do patient interventions result in reduced caregiver burden or improved patient outcomes ?
Moreover , interventions design ed to reduce caregiver burden have been largely , although not universally , unsuccessful .