Supporting family dementia caregivers: testing the efficacy of dementia care management on multifaceted caregivers’ burden

ABSTRACT

Objectives: Current research suggests that dementia care management (DCM) can decrease burden and associated health impairments of caregivers. The objective of this secondary analysis is to investigate the impact of DCM on multifaceted caregivers’ burden dimensions by differentiating between objective and subjective burden.

Methods: A sample of n = 317 dyads of caregivers and community-dwelling people with dementia (PwD) participated in a general practitioner-based, cluster-randomized intervention trial (Identifier:NCT01401582) with two arms and comprehensive data assessment at baseline and 12-month follow-up. Data provided by the caregiver included an inventory with 88 items in 20 different dimensions.

Results: Caregivers in the intervention ‘DCM’ group showed decreased caregiver burden, especially in caregivers’ objective burden due to caring (i.e. emotional support), caregivers’ subjective burden due to behavior change (i.e. cognition, aggression and resistance, depression, late symptoms) and caregivers’ subjective burden due to perceived conflicts between needs and responsibilities to care (i.e. financial losses) compared to caregivers in the control ‘care as usual’ group, which showed significant increased caregiver burden after 12 months.

Conclusion: Our findings support evidence for the effectiveness of DCM to lower family dementia caregivers' burden in multifaceted dimensions.     

Persons with mild or moderate Alzheimer's disease learn to use urine alarms and prompts to avoid large urinary accidents

This study assessed whether three patients with Alzheimer's disease could learn to use urine alarms and caregivers’ prompts to eliminate large urinary accidents. As soon as the patient began to release urine, the alarm system presented auditory and vibratory signals. In relation to those signals, the caregiver would prompt/encourage the patient to stop urinating and accompany him or her to the toilet to void. After urination, the caregiver provided the patient positive social attention. The results of the intervention showed that the use of the alarm system and caregivers’ prompts was effective in helping the three patients reduce their large urinary accidents to zero or near zero levels. Self-initiated toileting, which was minimal during baseline, accounted for nearly 35%, 50% and 75% of the patients’ toileting occasions during the intervention. Fifty-two caregivers, who participated in a social validation assessment of toileting approaches relying on alarm systems or timed toileting, seemed to find the former preferable for the patients, for the context, as well as for themselves. The implications of the findings for daily programs of patients with Alzheimer's disease and other dementias are discussed.     

Dementia care consultation for family caregivers: Collaborative model linking an Alzheimer's association chapter with primary care physicians

Objective: The primary objective is to report on the efficacy of an individualized dementia care consultation intervention for family caregivers of patients with diagnosed dementia living in the community. The secondary objective is to present evidence on the intervention process to inform the feasibility and sustainability of the model featuring collaboration between primary care physicians and a voluntary sector organization.

Method: Randomization was based on primary care physician practice site. In the intervention group, dementia care consultants located at an Alzheimer's association chapter provided individualized counseling and support over a 12-month period, and sent copies of care plans developed with family caregivers to referring primary care physicians. In the control group, family caregivers received educational and community resource information but no care consultation. Nursing home admission of patients during the 12-month study period was the primary outcome; secondary outcomes included measures of caregiver self-efficacy for managing dementia, caregiver depressive symptoms, and caregiver burden.

Results: A total of 84 family caregivers participated. After adjusting for baseline characteristics, patients whose family caregivers were in the intervention group were less likely than their control group counterparts to be admitted to a nursing home (Adjusted odds ratio = 0.40; 95% C.I. = 0.14–1.18; p = 0.10). No other outcomes were significantly different between treatment groups; however, intervention group caregivers reporting greater satisfaction with the intervention showed improved self-efficacy for managing dementia compared to their less satisfied counterparts. Medical record reviews found that care plans were found in most patient records, but that only 27% of intervention group caregivers reported discussing these care plans with physicians. Three different individuals occupied the dementia care consultant position during the study period, and this turnover led to family caregiver dissatisfaction.

Conclusion: The dementia care consultation intervention showed favorable effects on nursing home admission and on caregiver outcomes among intervention group caregivers more satisfied with the intervention, but there are important barriers to sustaining this collaboration between primary care physicians and a voluntary sector organization such as an Alzheimer's association chapter.     

A multinational review of recent trends and reports in dementia caregiver burden

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? Our findings suggest that noncognitive, behavioral disturbances of patients with dementia result in increased caregiver burden and that female caregivers bear a particularly heavy burden across cultures, particularly in Asian societies. Caregiver burden influences time to medical presentation of patients with dementia, patient condition at presentation, and patient institutionalization. Moreover, interventions designed to reduce caregiver burden have been largely, although not universally, unsuccessful. Pharmacological treatments for symptoms of dementia were found to be beneficial in reducing caregiver burden. The consistency of findings across studies, geographic regions, cultural differences, and heathcare delivery systems is striking. Yet, there are critical differences in cultural expectations and social resources. Future interventions to reduce caregiver burden must consider these differences, identify patients and caregivers at greatest risk, and develop targeted programs that combine aspects of a number of interventional strategies.     

PREDICTORS OF CHANGE AND CONTINUITY IN HOME CARE FOR DEMENTIA PATIENTS

Objective. To investigate predictors of change in the sense of competence of primary caregivers and continuity in home care for dementia patients. Design. A prospective longitudinal study with a follow-up period of 10 months. Setting. Dementia patients living in the community selected by Dutch general practitioners. Subjects. Pairs of demented patients and their primary caregivers (N=138). Main outcome measures. Sense of competence: a 27-item scale (α=0.79) based on issues derived from the family crisis model and the Burden Interview. Continuity in home care is determined by the number of patient's admissions to a nursing or retirement home. Results. Regression analysis revealed that a change in the caregiver's sense of competence was independently predicted by characteristics of the patient, the primary caregiver and the professional social network. A decreased sense of competence was associated with a longer duration of dementia and the patient's more agitated behaviour, the caregiver's higher initial sense of competence and being a female caregiver sharing a household with the demented patient. A positive influence on the change in the sense of competence was found when these females received a professional intervention consisting of support for the caregiver. Reporting to be a Catholic or a Protestant compared with not being religiously involved positively influenced the change in sense of competence. Logistic regression analysis identified that continuity in home care was predicted by characteristics of the demented patient and the professional social network of the patient. Predictors of continuation of home care were: lower severity of dementia, patient's higher ADL impairment, the intervention and involvement of regular home help. Institutionalization was more likely when the patient's behaviour was more apathetic and a district nurse was involved in the care. Conclusions. Caregiver characteristics influenced the change in sense of competence but did not influence the risk for institutionalization. Findings suggest that health professionals should pay attention to the negative consequences of agitated behaviour and to the most vulnerable group, females sharing a household with the demented patient.     

Training families to provide care: effects on people with dementia

This paper addresses four questions concerning family training in dementia care: (1) What do we know about what works? (2) How do we know it? (3) What do we now need to know? (4) How should we go about trying to find this out? In addition, it provides some introductory information on the nature of family caregivers in dementia and the phenomenology of caregiver burden and behavioral problems in dementia, often the focus of family training. Training families to provide care to dementia patients has a long clinical history. In recent years, the amount and popularity of this kind of information has grown exponentially, as is evident in the proliferation of books, training materials and informational handouts. Even video and world wide web technology is now used to educate caregivers. Over a decade ago, reports showed that caregivers were able to learn specific behavioral techniques and successfully reduce problematic behaviors. More recently, controlled trials have suggested the effectiveness of caregiver training programs in reducing behavioral problems or delaying institutionalization in patients with dementia. There is much still unknown concerning family training in dementia care. Additional controlled clinical trials are needed, as are additional studies to understand the broader factors known to influence effective care, such as patient and caregiver physical health or family and social supports.     

Acculturation level and caregiver outcomes from a randomized intervention trial to enhance caregivers' health: evidence from REACH II

Objective: Latinos comprise a growing segment of the caregiver population and vary widely in acculturation, yet little is known regarding how acculturation might affect caregiver stress or intervention outcomes. This study examined the relationship between acculturation and burden, bother, and depression in Latino dementia caregivers at baseline and following an intervention.

Methods: This was a secondary data analysis of 211 Latino caregivers of older adults with dementia from Resources for Enhancing Alzheimer's Caregiver Health (REACH) II, a multisite randomized trial of caregiver interventions. Baseline and follow-up data were used to run mixed-effects models examining the main and moderating effect of acculturation on caregiver stress.

Results: No significant main effect of acculturation was found for any of the outcome measures, controlling for demographic covariates. Acculturation moderated the effect of the intervention on caregiver burden: those who were more acculturated benefited more from the intervention.

Conclusion: Differential acculturation for Latino caregivers was not directly associated with caregiver burden, bother, or depression, but was associated with reducing burden from the intervention. Future research should explore by what mechanism acculturation influences caregiver burden following an intervention.     

Psychosocial predictors of dementia caregiver desire to institutionalize: caregiver, care recipient, and family relationship factors

Several factors influence dementia caregiver desire to institutionalize; however, little is known about differences in caregivers who desire institutionalization versus those who do not. The current study compares predictors of desire to institutionalize in dementia caregivers. Seventy-two caregivers completed the Desire to Institutionalize Scale (DIS) and several psychosocial measures, including burden, dementia knowledge, self-efficacy, depression, health, care recipient daily functioning and memory/behavior problems, family functioning, and social support. Based on DIS responses, caregivers were divided into No DI versus DI groups. DI caregivers had significantly higher burden, greater dementia knowledge, more family dysfunction, and decreased social support compared with No DI caregivers. Findings emphasize the importance of caregiver and family relationship variables in DIS, suggesting potentially modifiable targets for caregiver interventions. Dementia knowledge was associated with higher DIS, suggesting that educational programs alone may not be helpful to delay institutionalization.     

The Comorbidity of ADHD and Bipolar Disorder: Any Less Confusion?

Alzheimer’s disease (AD) is the most common type of dementia and is a significant public health problem that will intensify as the population ages. The behavioral and psychological symptoms of dementia (BPSD) present a significant burden to patients, their families, and their caregivers. The majority of care is provided at home by family caregivers. Caring for a person with AD and other dementias is associated with significant risk to the caregiver’s health and well-being. Healthcare providers must recognize that family caregivers often present as secondary patients. Given the importance of these caregivers to patients with AD and other dementias, it is vital to understand the risk factors that impact caregiver health and well-being. Non-pharmacological interventions can reduce the negative impact of caregiver burden on caregiver health, reduce premature institutionalization of patients, and improve quality of life for patients, their families, and their caregivers. This article summarizes recent relevant research concerning AD and dementia caregiver health and psychosocial interventions.     

Tailored activities to manage neuropsychiatric behaviors in persons with dementia and reduce caregiver burden: a randomized pilot study.

OBJECTIVE: To test whether the Tailored Activity Program (TAP) reduces dementia-related neuropsychiatric behaviors, promotes activity engagement, and enhances caregiver well-being. DESIGN: Prospective, two-group (treatment, wait-list control), randomized, controlled pilot study with 4 months as main trial endpoint. At 4 months, controls received the TAP intervention and were reassessed 4 months later. SETTING: Patients' homes. PARTICIPANTS: Sixty dementia patients and family caregivers. INTERVENTION: The eight-session occupational therapy intervention involved neuropsychological and functional testing, selection, and customization of activities to match capabilities identified in testing, and instruction to caregivers in use of activities. MEASUREMENTS: Behavioral occurrences, activity engagement, and quality of life in dementia patients; objective and subjective burden and skill enhancement in caregivers. RESULTS: At 4 months, compared with controls, intervention caregivers reported reduced frequency of problem behaviors, and specifically for shadowing and repetitive questioning, and greater activity engagement including the ability to keep busy. Fewer intervention caregivers reported agitation or argumentation. Caregiver benefits included fewer hours doing things and being on duty, greater mastery, self-efficacy, and skill enhancement. Wait-list control participants following intervention showed similar benefits for reductions in behavioral frequency and caregiver hours doing things for the patient and mastery. Caregivers with depressed symptoms derived treatment benefits similar to nondepressed caregivers. CONCLUSIONS: Tailoring activities to the capabilities of dementia patients and training families in activity use resulted in clinically relevant benefits for patients and caregivers. Treatment minimized trigger behaviors for nursing home placement and reduced objective caregiver burden. Noteworthy is that depressed caregivers effectively engaged in and benefited from the intervention.     

Collaborative memory intervention in dementia: Caregiver participation matters

The aim of the study was to examine the effectiveness of a collaborative memory intervention for persons with dementia and their spousal caregivers, where the couple acquired and practised memory supportive strategies (spaced-retrieval and hierarchical cuing) to learn a face–name association and to set a table for coffee/tea. The collaborative intervention was compared to an individual intervention where the person with dementia received the same training but without the participating caregiver and to a control group of couples receiving no training. The results showed that following collaborative intervention recall performance in two collaborative tasks became more equally shared between the spouses, reflected in a decrease in recall for the caregiver and in an increase in recall for the spouse with dementia between pre- and post-test; whereas for the other two groups the caregivers dominated collaborative recall both at pre- and post-test. The results also showed that the persons with dementia in the collaborative group improved their individually assessed episodic memory performance as compared to the persons with dementia in the other two groups. Finally, training had no effects on episodic memory, perceived burden or depressive symptoms for the caregivers. These results suggest that the active participation of the caregiver matters in cognitive dementia rehabilitation.     

Factors associated with dementia caregivers' preference for institutional care

Introduction

The prevalence of dementia is growing in Spain, and so is the number of caregivers who are considering the institutionalization of their relatives. The purpose of this study is to identify which variables are associated with caregivers’ desire for institutionalization their dementia relatives.

Patients and methods

Informal caregivers of 243 individuals suffering from dementia were interviewed. Predisposing variables (sociodemographic and contextual variables), stressors (dementia-related and caregiving-related aspects), appraisals (of circumstances and caregivers’ role), resources (personal and community-based resources) and the desire to institutionalize were evaluated.

Results

Over half of the caregivers (52.6%) indicated that they had some desire to institutionalize their relatives with dementia. Stepwise regression analysis revealed that caregivers’ consideration to institutionalize was associated with being a male caregiver, not being the spouse of the dementia patient, and with a higher consideration and higher use of community-based formal resources (short-term nursing home use, adult day care centres and psycho-stimulation).

Conclusions

Assessing and using formal resources outside their homes help caregivers overcome barriers that keep them from considering the institutionalization of their relatives. The difficulty in considering institutionalizing their relatives is more evident among spouses, who have stronger attachments with the dementia patients, especially among females, who probably feel obliged to continue developing caregiver roles because of their gender.     

Expressed emotion and depression in caregivers of older adults with dementia: results from Taiwan

Objectives: The purpose of this study was to examine the relationship between (1) expressed emotion (EE) and characteristics of Taiwanese dementia patients and their family caregivers and (2) EE and depressed mood, burden, and perception of health in Taiwanese caregivers of elderly persons with dementia.

Methods: Sixty-five primary caregivers of elderly persons with mild to severe dementia were recruited from institutions in Taiwan and they completed four standardized questionnaires: Level of Expressed Emotion (LEE) scale, Center for Epidemiologic Studies Depression (CES-D) scale, Zarit Burden Inventory (ZBI), and General Health Perceptions subscale of the Medical Outcomes Study Short Form 36 Health Survey (MOS SF-36).

Results: EE was positively associated with caregiver depression (r = .543; p < .001) and burden (r = .532; p < .001), and negatively associated with caregivers’ perceived health (r = ?.316; p = .010). The higher the caregivers’ depression and burden, the greater was their EE and the lower the caregivers’ perceived health, the higher was their EE. EE was negatively associated with caregiver education (r = ?.279; p = .024) and income (r = ?.261; p = .036). The lower the caregivers’ education and income, the higher was their EE.

Conclusion: The significant relationship between EE and caregivers’ mood and perceived burden suggests that caregivers with elevated mood or burden may put persons with dementia at greater risk for toxic, negative interactions from them. Although this study's design precludes attributing directionality, more depressed caregivers are at a greater risk of higher EE which may affect care of their elderly demented family members. Additional research is warranted with a larger sample size and/or a longitudinal design.     

Burden of caregiving in mild to moderate dementia: an Asian experience

This survey sought to determine (a) the prevalence of carer stress in patients with mild to moderate dementia, (b) whether caregiver burden was already associated with plans to institutionalize patients, and (c) which patient-related and caregiver-related variables best predicted caregiver burden. The principal caregivers of 93 Asian patients with mild to moderate dementia attending an outpatient cognitive assessment clinic were interviewed via a structured questionnaire that focused upon (a) patient-related variables such as their behavioral and functional abnormalities; and (b) caregiver-related variables such as whether they were having problems looking after the patients, the duration of their caregiving, their associated feelings of anger and/or depression, and their financial status as well as intentions to institutionalize patients. Forty-nine percent of caregivers reported problems in looking after the patients, and their perception of difficulties was significantly associated with institutionalization plans for the patients. Logistic regression analysis using a forward variable selection procedure showed two of the patients' behavioral abnormalities (repetition, agitation) and one of their functional impairments (urinary incontinence) as well as the carers' depressed feelings to be predictive of the carers' problematic status, explaining 40% of the variance. It is important that even in the early stages of dementia, the medical assessment also evaluate behavioral, functional, and social dimensions of the illness, so that appropriate interventions can be implemented to reduce caregiving burden and delay institutionalization.     

Psychoeducational intervention for caregivers of Indian patients with schizophrenia: a randomised‐controlled trial

Objective: There are hardly any randomised‐controlled trials of structured family interventions for schizophrenia from India. This study attempted to evaluate the impact of a structured psychoeducational intervention for schizophrenia, compared with standard out‐patient treatment, on various patient‐ and caregiver‐related parameters. Method: Seventy‐six patients with DSM‐IV schizophrenia and their caregivers were randomly allocated to receive either a structured psychoeducational intervention (n = 38) consisting of monthly sessions for 9 months or ‘routine’ out‐patient care (n = 38) for the same duration. Psychopathology was assessed on monthly basis. Disability levels, caregiver‐burden, caregiver‐coping, caregiver‐support and caregiver‐satisfaction were evaluated at baseline and upon completion. Results: Structured psychoeducational intervention was significantly better than routine out‐patient care on several indices including psychopathology, disability, caregiver‐support and caregiver‐satisfaction. The psychoeducational intervention package used was simple, feasible and not costly. Conclusion: Structured psychoeducational intervention is a viable option for treatment of schizophrenia even in developing countries like India.     

Predictors of long-term institutionalization in patients with Alzheimer's disease: role of caregiver burden]

BACKGROUND AND PURPOSE: The decision of long-term institutionalization of patients with Alzheimer's disease (AD) is based on multiple patients' and caregivers' characteristics. It is very important to find out factors associated with institutionalization for the timely institutionalization, i.e. for the prevention of premature institutionalization. Among those factors, caregiver burden is reportedly one of the most important factors in Europe and North America. However, no studies have been carried out in Japan. In order to address this issue, we studied outcome of patients with AD. SUBJECTS AND METHODS: Subjects were 211 patients who fulfilled the criteria of the National Institute of Neurological Disease and Stroke/Alzheimer's Disease and Related Disorders Association for probable AD. Diagnosis of AD was made through extensive examinations including MRI and PET/SPECT of the brain. The patients included 149 women and 62 men; the mean age was 73.1 +/- 8.0 (SD) years. The Japanese version of Zarit Caregiver Burden Interview (ZBI), which is a validated tool for assessment of the burden of caregivers for dementia patients, was used to evaluate caregivers' burden through the interview of a principal caregiver by trained nurses. Cognitive, functional, and neuropsychiatric impairments were assessed with standardized instruments of the Mini-Mental State Examination (MMSE), Hyogo Activities of Daily Living Scale (HADLS), Neuropsychiatric Inventory (NPI), respectively. We annually sent a questionnaire to the caregivers to collect information on the patients' status. It included questions whether and when they died or were institutionalized and whether they had used formal social supports such as home care, day care, and respite care services. MAIN OUTCOME MEASURE: Time to death or institutionalization. RESULTS: One-hundred and fifty subjects were followed for at least one year and 51 of them met either end point. The Cox proportional hazard model demonstrated that the baseline caregiver burden was a significant predictor of the end point even after controlling possible confounders. Among these, the use of day care and home care services during the course were significant protective factors. The baseline cognitive and functional disturbances but not neuropsychiatric manifestations were significantly associated with the end point. CONCLUSIONS: The caregiver burden is a significant predictor for the death or institutionalization of the patients with AD. The caregiver education which decrease the caregiver burden and prompt the usage of the social care services are necessary to protect premature institutionalization.     

Caregiver burden assessed in dementia care networks in Germany: findings from the DemNet-D study baseline

Objectives: This paper aimed to describe the burden experienced by informal caregivers supporting a person with dementia (PwD) who lives at home and utilizes a dementia care network (DCN), to investigate the factors that are associated with caregiver burden, and to identify possible differences in caregiver burden among different types of DCNs.

Method: This study was part of a multi-center, interdisciplinary evaluation of DCNs in Germany (DemNet-D). Cross-sectional data were collected in face-to-face interviews with people with dementia (PwDs) and their caregivers, and 13 DCNs were represented. Standardized questionnaires were used to assess caregiver burden, challenging PwD behaviors, functional competence and caregiver health status. Based on qualitative data, four DCN governance types were used in a multivariate analysis of burden categories.

Results: There were 560 PwD-caregiver dyads enrolled in the study. Informal caregivers (n = 536) reported a low-to-moderate burden associated with PwD characteristics (instrumental activities of daily living, challenging behaviors) and caregiver characteristics (gender) as well as the relationship between the caregivers and PwDs. Women felt more burdened but also showed higher levels of personal development. No differences were observed among the different DCN governance types.

Conclusions: DCNs might contribute toward moderate to low caregiver burden. Indicators of positive caregiving aspects can be used by DCNs to advance support structures for informal caregivers drawing upon interventions already established for other community settings. Particular interest should be paid to female and spousal caregivers who might be in in need of greater and/or different kinds of support.     

Family caregivers’ perspectives on medication adherence challenges in older people with dementia: a qualitative study

Abstract

Objectives: To achieve a better understanding of medication non-adherence determinants in older people with dementia from caregivers’ perspectives and possible management solutions to improve medication adherence.

Method: Semi-structured telephone interviews were conducted with 20 caregivers of older people with dementia living in the community. Data was analyzed using an inductive thematic analysis based on Braun and Clarke’s method.

Findings: Four themes emerged: dementia symptoms influence medication adherence, medication increases caregiver burden, lack of self-efficacy, medication aids and technology to enhance medication adherence. Caregivers’ lack of knowledge reduces their self-efficacy in managing medications and increases their burden of care. The majority of caregivers used technology and welcomed its use to assist them with their role.

Conclusion: Caregivers require knowledge and support such as a multifaceted technology based intervention to assist with medication adherence.     

An educational intervention to support caregivers of elders with dementia

The majority of home-dwelling elders with dementia are cared for by family members or friends. Interventions to support community-based caregivers are needed. A community-based seminar series was provided to 300 self-referred family caregivers with dementia. Participants were surveyed for caregiver burden and overload and perceived competence before and 6 months after the seminars. In all, 88 (29%) of participants completed a 6-month survey. Self-perceived caregiver competence improved (3.9 +/- 1.6 to 5.0 +/- 0.32, P < .006); a trend toward improvement in caregiver overload, and there was no change in caregiver burden. Caregivers with baseline parameters indicative of higher burden, overload, or lower competence showed improved scores at 6 months. The educational program was effective in improving competence and may have slowed the expected increase in burden associated with caring for those with a progressive dementia. Caregivers with higher burden may be targeted for this type of intervention, as they seemed to benefit the most.     

Mild Cognitive Impairment and Caregiver Burden: A 3-Year-Longitudinal Study

ObjectivesMild cognitive impairment (MCI) is common, affecting 10%–35% of people over 65, and poses unique challenges for patients and their caregivers. Comparatively little research has examined caregiver burden in this population, with longitudinal research, in particular, lacking. We examined caregiver burden in a sample of people with MCI over 3 years.DesignThree-year observational study.SettingNine memory clinics in Australia.ParticipantsOne-hundred-and-eighty-five people with MCI and their caregivers.MeasurementsMeasures of caregiver burden, cognition, function, neuropsychiatric symptoms, driving status, and medication use were completed with patients and their caregivers at regular intervals over a 3-year period.ResultsBetween 21.1% and 29.5% of caregivers reported a clinically significant level of burden over the study. Patients’ higher levels of neuropsychiatric symptoms, lower functional ability, and lack of driving ability, and caregivers’ employment were associated with greater caregiver burden over time. Caregiver burden did not increase over time when controlling for patient and caregiver characteristics.ConclusionsHigh levels of caregiver burden are present in a significant proportion of caregivers of people with MCI. Clinical characteristics of patients – including severity of neuropsychiatric symptoms and functional impairment – and the employment status of caregivers predict burden. Such characteristics may help identify caregivers at greater risk of burden to target for intervention.