A randomized trial of family caregiver support in the home management of dementia. Effect of institutional respite care on the sleep of people with dementia and their primary caregivers. Effects on Care-Givers of Special Day Care Programmes for Dementia Sufferers P02.84. A randomized trial of Polarity therapy for stress and pain reduction in American Indian and Alaska Native family dementia caregivers Effects of the Medicare Alzheimer's Disease Demonstration on the use of community-based services. Decision aids for respite service choices by carers of people with dementia: development and pilot RCT Effect of a training programme to reduce stress in carers of patients with dementia. Coping with dementia: evaluation of four nonpharmacologic interventions. Dementia day care and its effects on symptoms and institutionalization--a controlled Swedish study. The Duke–UNC Functional Social Support Questionnaire: Measurement of Social Support in Family Medicine Patients Evaluation of a Special Nursing Home Unit for Dementia Sufferers: A Randomised Controlled Comparison with Community Care A randomized trial of a CAM therapy for stress reduction in American Indian and Alaskan Native family caregivers. "Special steps": an effective visiting/walking program for persons with cognitive impairment. The effects of alternative support strategies on family caregiving. Recruiting and retaining family caregivers to a randomized controlled trial on mindfulness-based stress reduction. Respite services for caregivers: research findings for service planning. Summary and discussion of methods and results of the Adult Day Health Care Evaluation Study. Stress reduction for family caregivers: effects of adult day care use. The Prince Henry Hospital dementia caregivers' training programme. A controlled study of respite service for caregivers of Alzheimer's patients.
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 Before completion of the intervention , 18 ( 30 % ) were withdrawn , almost equally from each group .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 OBJECTIVES To evaluate the sleep-wake patterns of community-dwelling patients with dementia and their primary caregivers before , during , and after 2-week periods of institutional respite care .  DESIGN Prospect i ve case series . SETTING Four community hospital units in East Midl and s , United Kingdom . PARTICIPANTS Thirty-nine patients meeting Diagnostic and Statistical Manual of Mental Disorders , Fourth Edition , criteria for dementia and caregivers completed baseline assessment s ; 33 of these dyads completed the full protocol . INTERVENTION A 2-week period of institutional respite care during which patients were admitted to community hospitals ( and received routine care ) while caregivers remained at home . MEASUREMENTS For patients and caregivers , primary sleep outcomes were derived from 6 weeks of continuous wrist actigraphy ( 2 weeks baseline ; 2 weeks respite ; 2 weeks follow-up ) using the Actiwatch system . For caregivers , actigraphic measures were augmented with assessment s of quality of life ( using the Medical Outcomes Study 36-item Short Form survey ) and quality of sleep ( using the Pittsburgh Sleep Quality Index ) at baseline and by daily sleep diaries and weekly Epworth Sleepiness Scale ratings throughout the study . RESULTS At baseline , caregivers and patients showed profiles of clinical ly significant sleep disturbance . For caregivers , respite periods were associated with significant ( P<.05 ) increases in total sleep time per night , total time in bed per night , and improvements in subjective sleep quality . The benefits of respite were most evident for caregivers who did not share a bedroom with the patient . For patients , respite was associated with significant ( P<.05 ) increases in sleep onset latency , reductions in total sleep time per night , and weakening of the circadian activity rhythm . All measures shifted in the direction of baseline levels at follow-up . CONCLUSION Dementia caregivers show a profile of sleep disturbance consistent with adjustment insomnia , with sleep disturbances partially reversed during periods of institutional respite care . Nevertheless , for patients , respite care worsens already disturbed sleep patterns . To optimize benefits for caregivers and patients , respite care should target sleep management Two groups of care-givers to dementia sufferers were interviewed to assess their psychological symptoms and the behaviour problems of the dementia sufferers . The first group were using  special dementia day care while the second group were about to begin using it . The second group were re-interviewed three months later . Therefore two comparisons could be made ; a with/without day care comparison and a before/after admission to day care comparison . Care-givers had a high level of psychological symptoms which were not significantly reduced by using day care . Full-time institutional care did reduce distress . Day centre clients continued to deteriorate as would be expected with a degenerative condition . While special dementia day care centres appear to play a useful role for many care-givers , they may provide too few hours relief per week to markedly reduce the care-givers ' psychological symptoms . Family care-givers currently take the major role in caring for dementia sufferers in the community and the burden of care needs to be shared more equitably Purpose Caregivers of individuals with dementia experience elevated stress that places them at increased risk for health problems . The purpose of this study was to compare a complementary/alternative medicine ( CAM ) method , Polarity therapy ( PT ) , to an enhanced respite control condition ( ERC ) to reduce stress , depression and pain for American Indian and Alaskan Native ( AI ) family caregivers . A mixed methods , community participatory , indigenous values approach was combined with a r and omized controlled clinical trial to assure both ecological validity and scientific rigor of the investigation 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 Decision aids are often used to assist individuals confronted with a diagnosis of a serious illness to make decisions about treatment options . However , they are rarely utilised to help those with chronic or age related conditions to make decisions about care services . Decision aids should also be useful for carers of people with decreased decisional capacity . These carers ' choices must balance health outcomes for themselves and for salient others with relational and value-based concerns , while relying on information from health professionals . This paper reports on a study that both developed and pilot tested a decision aid aim ed at assisting carers to make evaluative judgements of community services , particularly respite care . Methods A mixed method sequential study , involving qualitative development and a pilot r and omised controlled trial , was conducted in Tasmania , Australia . We undertook 13 semi-structured interviews and three focus groups to inform the development of the decision aid . For the r and omised control trial we r and omly assigned 31 carers of people with dementia to either receive the service decision aid  at the start or end of the study . The primary outcome was measured by comparing the difference in carer burden between the two groups three months after the intervention group received the decision aid . Pilot data was collected from carers using interviewer-administered question naires at the commencement of the project , two weeks and 12 weeks later . Results The qualitative data strongly suggest that the intervention provides carers with needed decision support . Most carers felt that the decision aid was useful . The trial data demonstrated that , using the mean change between baseline and three month follow-up , the intervention group had less increase in burden , a decrease in decisional conflict and increased knowledge compared to control group participants . Conclusions While these results must be interpreted with caution due to the small sample size , all intervention results trend in a direction that is beneficial for carers and their decisional ability . Mixed method data suggest the decision aid provides decisional support that carers do not otherwise receive . Decision aids may prove useful in a community health services context .Trial registration numberIS RCT N : IS RCT OBJECTIVE --To reduce the psychological stress and improve the skills in coping of people who care for relatives with dementia . DESIGN -- Assessment and suitability of carers by question naire ; assessment of patients and carers in a hospital outpatient clinic ; allocation to groups according to date of application to study . Linkage of groups of four carers and programme coordinator by telephone conference calls over 12 months after programmes . Re assessment at three , six , 12 , and , for those in the " wait list " group , 18 months . SETTING --The programmes were conducted in the psychiatry unit of a Sydney teaching hospital . SUBJECTS -- Eligible patients were less than 80 years old , had mild to moderate dementia , and lived at home with their carer . Of the 96 patient-carer pairs in the study , 33 were in the dementia carers ' programme group  , 31 were in the memory retraining group , and 32 were in the wait list group . INTERVENTIONS --Carers in the dementia carers ' programme received training in coping with the difficulties of looking after patients with dementia while the patients had sessions in subjects such as memory retraining . In the memory retraining programme  patients were admitted and received the patient component of the carers ' programme while their carers had 10 days ' respite . In the wait list group carers waited six months before undertaking the carers ' programme . MAIN OUTCOME MEASURES --Effect of the programmes on carers ' general health question naire scores and the rate of placement of patients in institutions . RESULTS --At 12 months ' follow up the carers ' programme had result ed in significantly lower psychological stress among carers than the memory retraining programme ( mean ( SD ) general health question naire scores at 0 months were 6.31 ( 6.23 ) and 3.60 ( 6.25 ) respectively , and at 12 months were 4.69 ( 5.58 ) and 7.40 ( 9.39 ) ; p less than 0.05 . ) In the wait list group distress scores remained stable , even after the carers and patients had undertaken the carers ' programme . Patients deteriorated over 12 months regardless of group allocation , but at 30 months , allowing for patients who died and could not be included in the analysis , 65 % of patients in the carers ' programme group were still living at home compared with 26 % in the memory retraining programme group . CONCLUSION --The intensive intervention programme described for carers of patients with dementia can reduce the psychological morbidity of the carer and delay the placement of the patient in an institution without increasing the use of health services by either patient or carer To evaluate nonpharmacologic interventions , caregivers ( 65 women , 38 men ) and their dementia-diagnosed spouses ( patients ) were r and omized to one of four treatment programs ( cognitive stimulation , dyadic counseling , dual supportive seminar , and early-stage day care ) or to a wait-list control group . Assessment s occurred initially and at postintervention ( 3 months ) . Patients were evaluated on memory , verbal fluency , and problem-solving ability , and caregivers were assessed on marital interaction , emotional status , and physical health , along with stress , coping , and social support .  Caregivers also completed a program evaluation . Repeated measures procedures showed that patients in the cognitive stimulation group demonstrated more improvement over time in cognitive outcomes , and caregivers decreased in depressive symptoms . Early-stage day-care and dual supportive seminar group caregivers reported a decrease in hostility and a decrease in use of negative coping strategies , respectively . Although qualitatively derived benefits differed across groups , similarities in program content reduced the potential for quantitative differentiation among the groups OBJECTIVE To examine the effects of Day Care ( DC ) on demented patients . DESIGN A prospect i ve non-r and omized concurrent-control study . PARTICIPANTS 55 demented patients in DC and 44 controls . SETTING Sundsvall , an industrial community in northern Sweden . MAIN OUTCOME MEASURE Cognition , ADL-functions , behaviour and institutionalization . RESULTS Measurements of cognition , ADL-functions , and behaviour showed no or only small differences between the groups . After one year , 24 % of the patients in the DC-group were institutionalized , compared with 44 % of the controls . In the control group , the exhaustion of spouse and supervision need were highly correlated to institutionalization ( p < 0.001 ) , while high physical nursing load was correlated to institutionalization in the DC-group ( p < 0.01 ) . CONCLUSION DC postpones institutionalization , probably because of less exhaustion of spouses and decreased supervision need A 14-item , self-administered , multidimensional , functional social support question naire was design ed and evaluated on 401 patients attending a family medicine clinic . Patients were selected from r and omized time-frame sampling blocks during regular office hours . The population was predominantly white , female , married , and under age 45 . Eleven items remained after test-retest reliability was assessed over a 1- to 4-week follow-up period . Factor analysis and item remainder analysis reduced the remaining 11 items to a brief and easy-to-complete two-scale , eight-item functional social support instrument . Construct validity , concurrent validity , and discriminant validity are demonstrated for the two scales ( confidant support — five items and affective support —three items ) . Factor analysis and correlations with other measures of social support suggest that the three remaining items ( visits , instrumental support , and praise ) are distinct entities that may need further study Applicants for a newly opened special unit for dementia sufferers were r and omly allocated to full-time care in the unit or placed on a waiting list and offered periodic respite care in the meantime .  All applicants were living in the community at the time of r and om assignment . Both groups were followed up for three months to assess the effects on the dementia sufferers and on their family care-givers . Care-givers initially had a high level of psychological symptoms , which was greatly reduced after admission of the dementia sufferer to full-time care . By contrast , the care-givers of the community care group of sufferers continued to have a high level of symptoms . Dementia sufferers continued to deteriorate with both forms of care , with little difference between the two groups . Admission of dementia sufferers to full-time care in a special unit appears to be of great benefit to the psychological health of their care-givers and has no adverse effects on the dementia sufferers themselves PURPOSE Although it is widely recognized that caregivers of individuals with dementia experience elevated stress that places them at increased risk for health problems , little is known about how caregiving stress may be alleviated among underserved ethnic minority population s. The purpose of this study was to compare a complementary and alternative medicine therapy , polarity therapy ( PT ) , to an enhanced respite control condition ( ERC ) to reduce stress and depression and improve quality of life for American Indian ( AI ) and Alaskan Native family caregivers . DESIGN AND METHODS Forty-two AI family caregivers of individuals with dementia , living on and off reservations in the Pacific Northwest , were r and omized to an 8-session trial of PT or ERC . PT is a touch therapy that uses gentle pressure on energy points and biofields to help the client achieve physiological relaxation . ERC included respite care for the person with dementia and a choice of activities for the caregiver . Average age of caregivers was 50 years ( range 27 - 69 years ) ; 90 % were women ; 52 % daughters , 10 % wives , 7 % sons , and 31 % other relatives . Outcome assessment s administered at baseline and posttreatment included caregiver perceived stress , depression , quality of life , sleep quality , worry , and physical health . RESULTS PT participants improved significantly more than ERC participants on stress ( p = .01 ) , depression ( p = .045 . ) , bodily pain ( p = .02 ) , vitality ( p = .03 ) , and general health ( p = .01 ) . IMPLICATION S These results indicate that the delivery of PT to AI dementia family caregivers is feasible and culturally acceptable and may be an important approach to reducing stress , depression , and pain A program for elderly persons with cognitive impairment and their caregivers was evaluated for its effectiveness and efficiency with regard to caregiver burden , sense of coherence , satisfaction , and cost to the health-care system . The program consisted of a weekly 2-hour visit and walk by volunteers . During a 9-month period in 1997 , all eligible referrals were r and omly assigned to receive the service immediately ( experimental group ) or be placed on a waiting list to receive it 6 weeks later ( control group ) . Eleven caregivers/recipients formed the experimental group ; 10 caregivers/recipients formed the control group . All completed question naires at r and omization and at 6-week follow-up . Perceived burden decreased by 8 % only for the caregivers in the experimental group ( F = 6.8 , p = .02 ) . They indicated that they appreciated the respite and support and that the care recipient enjoyed the visit/walk . Although this study was short in duration and small in sample size , improvements were noted in perceived caregiver burden and caregivers expressed satisfaction with the program . The program did not result in additional health and social-service expenditures Family units ( N = 541 ) of impaired elderly persons and caregivers were r and omly assigned to a control group or one of five treatment groups eligible for a variety of respite or educational services . After 12 months of service eligibility , caregivers of elderly persons remaining in the community reported lower levels of subjective burden . Services appeared to delay nursing home placement among families with adult child caregivers , but encouraged placement by spouse caregivers Caregivers for a family member with dementia experience chronic long-term stress that may benefit from new complementary therapies such as mindfulness-based stress reduction . Little is known however , about the challenges of recruiting and retaining family caregivers to research on mind-body based complementary therapies . Our pilot study is the first of its kind to successfully recruit caregivers for a family member with dementia to a r and omized controlled pilot study of mindfulness-based stress reduction . The study used an array of recruitment strategies and techniques that were tailored to fit the unique features of our recruitment sources and employed retention strategies that placed high value on establishing early and ongoing communication with potential participants . Innovative recruitment methods including conducting outreach to health plan members and generating press coverage were combined with st and ard methods of community outreach and paid advertising . We were successful in exceeding our recruitment goal and retained 92 % of the study participants at post-intervention ( 2 months ) and 90 % at 6 months . Recruitment and retention for family caregiver interventions employing mind-body based complementary therapies can be successful despite many challenges . Barriers include cultural perceptions about the use and benefit of complementary therapies , cultural differences with how the role of family caregiver is perceived , the use of group-based design s requiring significant time commitment by participants , and travel and respite care needs for busy family caregivers A demonstration respite project for caregivers of older people with Alzheimer 's disease was evaluated by a r and omized experiment . Three hundred and sixteen volunteer primary caregivers were offered respite services and 315 completed the research portion without the offer of respite . The research indicated that even before the demonstration most families had some respite help in place . Of all those offered respite , 58 % availed themselves of the offer . During the project year experimental and control subjects were equal in using slightly more services and there was no evidence that formal services had substituted for informal This article summarizes the study results and presents an evaluative summary of the implementation of study methods design ed to provide guidance in the degree of confidence with which the results may be accepted and generalized to other situations . Patients who were offered VA-ADHC services in the first phase of this study had significantly higher VA health care costs on average than patients assigned to customary care , with no apparent incremental health benefit to themselves or their care givers . One can have a high level of confidence in these results . The ADHC clinical services were implemented as planned , the r and omized controlled trial was implemented successfully , and such threats to validity as insufficient numbers of patients and differential attrition were not present . Certain subgroups of patients assigned to VA-ADHC had VA costs of care that were not significantly higher than those assigned to customary care , although these results must be interpreted with caution . The findings of the second phase of the study evaluating contract ADHC provide no support for choosing to provide either contract ADHC or VA-ADHC over the other . The nonr and omized design and smaller sample size suggest that inferences from the contract ADHC evaluation should be drawn with more caution than those from the VA-ADHC evaluation OBJECTIVES This study reports the findings of an evaluation of the psychological benefits of use of adult day care by family caregivers assisting a relative with dementia . METHODS The study used a quasi-experimental design in which caregivers in the treatment group used substantial amounts of services , whereas  caregivers in a control group did not use day care at any point during the evaluation and only small amounts of other respite services . The evaluation was guided by the stress process model of caregiving which distinguishes between appraisal s of primary stressors and well-being . RESULTS Results after 3 months of day care use showed that the treatment group had significantly lower scores than the control group on two of the three measures of primary appraisal s ( overload and strain ) and two of the three measures of well-being ( depression and anger ) . Findings at one year showed that the treatment group had significantly lower scores on overload and depression than the control group . DISCUSSION These results demonstrate that use of adult day care by caregivers of dementia patients results in lower levels of caregiving-related stress and better psychological well-being when compared to that of controls OBJECTIVE To describe the theory , elements and practice of a successful caregiver training programme ; and report the 8-year outcome . DESIGN Prospect i ve , r and omized control trial and longitudinal follow-up over approximately 8 years . SETTING Psychiatry unit , general teaching hospital , Sydney , Australia . PARTICIPANTS 96 persons less than 80 years old with mild to moderate dementia and their cohabiting caregivers . INTERVENTIONS All patients received a 10-day structured memory retraining and activity programme . Caregivers in the immediate and wait-list caregiver training groups received a structured , residential , intensive 10-day training programme , boosted by follow-ups and telephone conferences over 12 months . Those in the wait-list group entered the programme after waiting 6 months . The third group of caregivers received 10 days ' respite ( while patients underwent their memory retraining programme ) and 12 months booster sessions as for the other groups . MAIN OUTCOME MEASURES Nursing home admission ; time until patient death . MAIN RESULTS 64 % of patients whose caregivers were in the immediate training group , 53 % of wait-list group patients and 70 % of memory retraining patients had died . Nursing home admission had occurred in 79 % of the immediate training , 83 % of the delayed and 90 % of the memory retraining group . Eight-year survival analysis indicated that patients whose caregivers received training stayed at home significantly longer ( p = 0.037 ) and tended to live longer ( p = 0.08 ) . CONCLUSIONS Caregiver training programmes demonstrably can delay institutionalization of people with dementia After a baseline interview of 642 caregivers of aged Alzheimer 's disease victims , half were offered formal respite care . Over 12 months , families with respite care  maintained their impaired relative significantly longer in the community ( 22 days ) . Although respite was ineffective for caregiver burden and mental health , satisfaction was very high . Although not a strong intervention , respite care can increase caregivers ' quality of life
BACKGROUND Caring for someone with dementia can be emotionally and physically dem and ing .
Respite care is any intervention design ed to give rest or relief to caregivers .
It is not clear what positive and negative effects such care may have on them , or on people with dementia .
OBJECTIVES To assess the benefits and harms of respite care for people with dementia and their caregivers , in particular the effect of respite care on rates of institutionalisation .