Longitudinal trajectories of awareness in early-stage dementia

Although it is often assumed that awareness decreases as dementia severity increases, there is limited evidence regarding changes in awareness over time. We examined awareness in 101 individuals with early-stage dementia (PwD) and their carers; 66 were reassessed after 12 months and 51 were seen again at 20 months. Awareness was assessed in relation to memory, everyday activities, and socio-emotional functioning using discrepancies between PwD and carer ratings on parallel questionnaires. PwD completed neuropsychological tests and measures of mood and quality of life. Carers completed measures of mood and stress. At initial assessment, discrepancies were greatest for activities of daily living, moderate for memory, and least pronounced for socio-emotional functioning. Discrepancy scores did not change over time. PwD self-ratings indicated perceived poorer functioning in everyday activities over time, but no change for memory and socio-emotional functioning. Carer ratings indicated perceived decline in everyday activities and socio-emotional functioning, but no change for memory. PwD declined in neuropsychological functioning, but self-ratings of depression, anxiety, and quality of life remained stable over time. Carer mood and stress levels also remained stable. At least in the earlier stages of dementia, it should not be assumed that awareness will inevitably decrease as dementia progresses.     

Psychological well-being over time among informal caregivers caring for persons with dementia living at home

Objectives: To investigate informal caregivers’ psychological well-being and predicted increase in psychological well-being, when caring for persons with dementia (PwDs) living at home, related to caregiver, PwD and formal care (FC) factors.

Method: A cohort study at baseline and 3 months’ follow-up in eight European countries. Caregivers included (n = 1223) were caring for PwDs aged ≥ 65 years at home. Data on caregivers, PwDs and FC were collected using standardized instruments. Regression analysis of factors associated with caregiver psychological well-being at baseline and 3 months later was performed.

Results: Factors associated with caregiver psychological well-being at baseline were positive experience of caregiving, low caregiver burden, high quality of life (QoL) for caregivers, male gender of PwD, high QoL of PwD, few neuropsychiatric symptoms and depressive symptoms for the PwD. At follow-up, caregivers with increased psychological well-being experienced of quality of care (QoC) higher and were more often using dementia specific service. Predicting factors for caregivers’ increased psychological well-being were less caregiver burden, positive experience of caregiving, less supervision of the PwD and higher caregiver QoL, if PwD were male, had higher QoL and less neuropsychiatric symptoms. Furthermore, higher QoC predicted increased caregivers’ psychological well-being.

Conclusion: Informal caregiving for PwDs living at home is a complex task. Our study shows that caregivers’ psychological well-being was associated with, among other things, less caregiver burden and higher QoL. Professionals should be aware of PwD neuropsychiatric symptoms that might affect caregivers’ psychological well-being, and provide proper care and treatment for caregivers and PwDs.     

Premorbid relationship satisfaction and caregiver burden in dementia caregivers

Dementia caregiver appraisal of the quality of their current and premorbid relationship with the care recipient is associated with caregiving behaviors, caregiver mood, and the decision to end home care. This study examined the contribution of premorbid relationship satisfaction to caregiver burden in dementia caregivers. Live-in dementia caregivers (n = 72) completed several psychosocial measures. Caregiver responses were used to divide them into low premorbid relationship satisfaction group (low) versus high premorbid relationship satisfaction group (high). Results indicate that premorbid relationship satisfaction is negatively associated with caregiver burden and quality of family functioning. Caregivers with high satisfaction demonstrated significantly less burden and less reactivity to memory and behavior problems, and better problem solving skills and more effective communication compared with the low caregivers. Findings are independent of length of caregiving, disease severity, care recipient daily functioning, and relationship type. Relationship satisfaction may be an important contributor to caregiver burden.     

What explains differences between dementia patients' and their caregivers' ratings of patients' quality of life?

OBJECTIVE: The authors assessed the magnitude of discrepancy between patients' and caregivers' ratings of the patients' quality of life and sought to determine whether the discrepancies are associated with patient characteristics, caregiver characteristics, or the type of relationship between the patient and caregiver. METHODS: A sample of 91 patients with mild-to-moderately severe dementia and their primary family caregiver rated five domains of the patients' subjective quality of life. RESULTS: Agreement between patients and caregivers was low. Caregivers rated patients' quality of life lower than patients rated their own in all five domains. Discrepancies between patients' and caregivers' ratings were not associated with the patients' cognitive performance, level of functioning, nor caregivers' reports of aggressive, attention-seeking, or sexually inappropriate behaviors, nor whether the caregiver lived with or was married to the patient. However, discrepancies were associated with level of caregiver burden and the patients' report of depressive symptoms. Patients with depression reported low quality of life, which matched caregivers' low rating of patients' quality of life. Caregivers who reported higher levels of burden rated patients' quality of life lower than did patients in all five domains of quality of life. CONCLUSIONS: Discrepancies between dementia patients' and their caregivers' ratings of the patients' quality of life are associated with increased levels of caregiver burden, rather than lower levels of patients' functioning. The results of this study support the direct assessment of mild-to-moderate dementia patients about their subjective quality of life.     

Religiosity and quality of life: a dyadic perspective of individuals with dementia and their caregivers

Objectives: Dyadic coping theory purports the benefit of joint coping strategies within a couple, or dyad, when one dyad member is faced with illness or stress. We examine the effect of religiosity on well-being for individuals with dementia (IWDs). In particular, we look at the effect of both dyad members’ religiosity on perceptions of IWDs’ quality of life (QoL). Neither of these issues has been extensively explored.

Method: One hundred eleven individuals with mild-to-moderate dementia and their family caregivers were interviewed to evaluate IWDs’ everyday-care values and preferences, including religious preferences. Using an actor–partner multi-level model to account for the interdependent relationship of dyads, we examined how IWD and caregiver ratings of religiosity (attendance, prayer, and subjective ratings of religiosity) influence perceptions of IWDs’ QoL.

Results: After accounting for care-related stress, one's own religiosity is not significantly related to IWDs’ or caregivers’ perceptions of IWD QoL. However, when modeling both actor and partner effects of religiosity on perceptions of IWDs’ QoL, caregivers’ religiosity is positively related to IWDs’ self-reports of QoL, and IWDs’ religiosity is negatively associated with caregivers’ perceptions of IWDs’ QoL.

Conclusion: These findings suggest that religiosity of both the caregiver and the IWD affect perception of the IWD's QoL. It is important that caregivers understand IWDs’ values concerning religion as it may serve as a coping mechanism for dealing with dementia.     

The impact of neuropsychiatric symptoms of dementia on distress in family and professional caregivers in Singapore

BACKGROUND: Behavioral and psychological symptoms of dementia (BPSD) are a source of distress and burden for caregivers. This study attempts to determine the neuropsychiatric symptoms, demographic characteristics, and referral patterns of outpatients with dementia compared with patients admitted to the acute psychogeriatric wards of Woodbridge Hospital. We also assessed the impact of neuropsychiatric symptoms on distress in family and professional caregivers. METHOD: Eighty-five consecutive patients with a first-time diagnosis of dementia were recruited. They were assessed using the Neuropsychiatric Inventory Caregiver Distress Scale (NPI-D). The professional caregiver distress questions were rephrased to assess the "occupational disruptiveness" of behaviors in the nursing home version (NPI-NH). RESULTS: Neuropsychiatric symptoms were common and were positively correlated with caregiver distress. Family caregivers were significantly more distressed than professional caregivers over the delusion, agitation, depression and aberrant motor domains, although the severity of the behavioral disturbances reported was not higher in the sample. The median NPI scores for the agitation and disinhibition domains were significantly higher in the inpatient group, contrasting with a higher score for the depression domain among the outpatient group. CONCLUSIONS: This study highlights the prevalence of neuropsychiatric symptoms in dementia and illustrates the strong correlation between the severity of behavioral disturbances and caregiver distress.     

Family functioning in the caregivers of patients with dementia

BACKGROUND: Caregiver burden has been extensively studied in the dementia population. The marital relationship has been suggested as a mediational model through which variables influence the caregiver and contribute to the experience of burden or reward. OBJECTIVES: This study examines family functioning, caregiver burden and reward and quality of life in 38 family members caring for a relative with dementia. METHODS: Caregivers of out-patients with dementia completed self report questionnaires. RESULTS: 63% of caregivers were female with a mean age of 62 years. Patient mean age was 73 years. The average number of caregiving years was 3.1. Caregivers were more likely to be spouses (61%) than children (29%) or other relatives (11%). Despite the fact that caregivers reported that their relatives were moderately disabled, they perceived more reward than burden. Caregivers who reported poor family functioning had higher ratings of strain and burden. Family functioning in these caregivers was poorest in the dimensions of affective responsiveness, problem solving and communication but it was also impaired in roles and affective involvement. CONCLUSIONS: Assessing a family's functioning may be an important factor in the care of the dementia patient and his/her family.     

Impact of frontal systems behavioral functioning in dementia on caregiver burden

Behavioral problems in the dementia patient are some of the strongest predictors of caregiver burden, though the impact of specific types of behavioral problems on burden is limited. This study investigated the contribution of frontal systems behavioral functioning (i.e., apathy, executive dysfunction, and disinhibition) on caregiver burden. Seventy-two family caregivers completed the Frontal Systems Behavior Scale and measures of mood, perceived burden, and patient ratings of functional impairment. Regression analyses indicated that frontal systems behavioral problems were predictive of caregiver burden after controlling for dementia severity and caregiver depression. Analyses of subscales revealed that executive dysfunction and disinhibition were predictors of caregiver burden. Results argue for including strategies for managing frontal systems behavioral problems, particularly executive dysfunction and disinhibition, in dementia caregiver interventions.     

Behavioral and psychological symptoms of dementia and caregivers' stress appraisals: intra-individual stability and change over short-term observations

Dementia is commonly associated with memory loss, but Behavioral and Psychological Symptoms of Dementia (BPSD) such as disruptive behaviors, agitation, and problems with mood, usually have a more significant impact on caregivers' stress. It is known that BPSD and caregivers' stress reactions vary in frequency over the long-term course of dementia, however little is known about the variability over the short-term. The current study included 85 people with dementia and their primary caregivers assessed over three months. Caregivers used a 24-hour log on multiple, consecutive days to report behavioral symptoms of dementia on seven domains of behavior, as well as their stress reactions for each domain. Using latent growth curve analysis, most BPSD and caregiver stress appraisals were found to be, on average, stable over the three-month time frame. For many BPSD and stress appraisal models, however, intra-individual differences in rate of change were significantly different from the mean trend, indicating behaviors and stress are not stable over three months when assessed at the level of the individual. Covariates were used to explain individual differences in rates of change; however few variables were significantly associated with intra-individual short-term change over time.     

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.     

Do caregiver management strategies influence patient behaviour in dementia?

OBJECTIVES: Little is known about the effectiveness of caregiver management strategies on the functioning of the demented patient. However, identification of specific caregiver strategies may provide useful information on the management and manifestation of behavioural problems in dementia. METHODS: Ninety-nine patients with dementia and their informal caregivers were followed up for one year. Interviews were used to assess differences in caregiver management strategies. Behavioural disturbances in the patient were measured with the Neuropsychiatric Inventory (NPI). Repeated measures analysis were carried out to investigate the relationship between caregiver management strategies and patient behaviour. RESULTS: Three caregiver management strategies were identified, based on whether caregivers accepted, or not, the caregiving situation and dementia related problems. Caregivers characterized by non-acceptance were typified as 'Non-adapters'; caregivers characterized by acceptance were further subdivided into two groups typified as 'Nurturers' and 'Supporters'. Caregiver characteristics such as sex, education and personality were important determinants of management strategies. MANOVA showed that non-adapters reported significantly more hyperactivity symptoms in patients and felt less competent than did supporters. CONCLUSIONS: Caregiver management strategies would appear to be associated with behavioural problems in dementia, and are important in predicting patient behaviour and caregiver burden. Intervention programmes should aim at teaching caregivers adequate management strategies.     

The stress and psychological morbidity of the Alzheimer patient caregiver.

BACKGROUND: Alzheimer's family caregivers suffer from psychological and physical morbidity associated with the care of the Alzheimer's patient. The objectives of the study were to compare stress and psychological morbidity between family caregivers of Alzheimer's disease patients and family caregivers of aged non-demented chronically ill patients and to explore the impact of cognitive and non-cognitive patient symptoms on caregivers.METHOD: Fifty-eight caregivers of Alzheimer's patients (cases) and 32 caregivers of non-demented chronically ill patients (controls) were studied. A cross-sectional case-control design was employed using validated scales to assess patient symptomatology and self-report questionnaires to measure stress and psychological morbidity in caregivers.RESULTS: Compared to controls, stress and psychological morbidity were higher in caregivers of Alzheimer's patients. Behavioral symptoms and impairment in instrumental activities of daily living were associated with caregiver stress. Length of care was associated with caregiver psychological morbidity.CONCLUSIONS: Caregiver stress may be reduced with special attention paid to the treatment and management of behavioral and functional symptoms in the Alzheimer's disease patient. Caregiver education and coping skills should also be included.     

Quality of life and burden in caregivers of youth with obsessive-compulsive disorder presenting for intensive treatment

BackgroundPediatric obsessive-compulsive disorder (OCD) is associated with deleterious familial effects; caregivers are often enmeshed in the disorder and can experience considerable burden and decreased quality of life (QoL). Consequently, this study examined burden and QoL in caregivers of youth with OCD enrolled in an intensive outpatient or partial hospitalization program.MethodThe relationships between caregiver QoL and burden and the following variables were investigated: OCD symptom severity, functioning (youth functional impairment, general family functioning), family (family accommodation, parental relationship satisfaction, positive aspects of caregiving), and comorbid psychopathology (caregiver anxiety and depressive symptoms, youth internalizing and externalizing behaviors). Seventy-two child and caregiver dyads completed clinician- and self-rated questionnaires.ResultsComponents of caregiver QoL correlated with caregiver-rated functional impairment, family accommodation, youth externalizing behaviors, and caregiver psychopathology. Aspects of caregiver burden correlated with child OCD symptom severity, functional impairment related to OCD, as well as caregiver and child comorbid psychopathology. Caregiver depressive symptoms predicted caregiver QoL, and caregiver depressive symptoms and child externalizing symptoms both predicted caregiver burden. Caregiver burden did not mediate the relationship between obsessive-compulsive symptom severity and caregiver QoL.ConclusionUltimately, elucidating factors associated with increased caregiver burden and poorer QoL is pertinent for identifying at-risk families and developing targeted interventions.     

Stress on relative caregivers of dementia sufferers,and predictors of the breakdown of community care

The stress upon the principal relative caregivers of a series of dementia sufferers attending an assessment day hospital was studied. The main variables influencing stress levels were the caregiver's own health self-rating and a measure of behaviour and mood disturbance in the patient. Predictors of the breakdown of community care over a 1-year follow-up period were studied. At 12 months caregiver's ‘caseness’ on the GHQ was a highly significant predictor. Clinical work with dementia sufferers in the community should include an assessment of the health and psychological status of the caregiver. Future research should focus upon evaluating specifically targeted interventions aimed at reducing stress in caregivers.     

Caregiver burden associated with behavioral and psychological symptoms of dementia in elderly people in the local community

BACKGROUND: Despite many studies about the association between caregiver burden and behavioral and psychological symptoms of dementia (BPSD), there have been no population-based studies to evaluate caregiver burden associated with each BPSD. OBJECTIVE: To evaluate caregiver burden associated with the individual BPSD in elderly people living in the community. METHODS: The subjects were 67 participants with dementia living with their caregivers (diagnosed in the third Nakayama study): 51 Alzheimer's disease, 5 vascular dementia and 11 other. The Neuropsychiatric Inventory (NPI) and NPI Caregiver Distress Scale (NPI-D) were used to assess subjects' BPSD and related caregiver distress, respectively. RESULTS: In the subjects exhibiting BPSD, aberrant motor behavior had the highest mean NPI score, and depression/dysphoria had the lowest. Agitation/aggression had the highest mean NPI-D score, and euphoria/elation had the lowest. Delusion, agitation/aggression, apathy/indifference, irritability/lability and aberrant motor behavior showed a correlation between the NPI and NPI-D scores. CONCLUSION: The burden associated with BPSD is different for each symptom and does not always depend on frequency and severity of BPSD. These findings suggest that some symptoms, such as agitation/aggression and irritability/lability, may affect the caregivers significantly, although their frequency and severity are low.     

Effect of deep brain stimulation on caregivers of patients with Parkinson's disease: A systematic review

BackgroundCaregivers of patients with Parkinson's Disease (PD) often provide important support in the pre- and postoperative phase of Deep Brain Stimulation (DBS). DBS-associated changes of patient-functioning may affect caregiver wellbeing and impact the support system. Factors influencing caregiver-wellbeing under these circumstances are incompletely known.Objectiveto systematically review studies of sufficient methodological quality on the impact of DBS on caregivers of PD patients.Methodsusing PRISMA guidelines, major databases were searched up to May 2020. Five subcategories were identified: Caregiver burden, Caregiver cognitive and psychiatric functioning, Caregiver Quality of Life (QoL), Marital Satisfaction/Conflicts, and Caregiver Satisfaction. Quality was assessed using an in-house checklist.Results293 studies were identified; 12 were ultimately included. Caregiver burden, psychiatric and cognitive functioning and QoL remained relatively unchanged. Results on marital satisfaction/conflicts were contrasting: an increase in marital conflicts despite improved relationship quality scores DBS. Caregiver satisfaction with surgery was low with 50–58% of caregivers being disappointed with DBS outcomes. Concerning caregiver related factors: a higher preoperative caregiver QoL, younger age, lower scores on psychiatric rating scales, and more favourable preoperative relationship quality scores, were associated with better caregiver wellbeing. A favourable patient-profile includes younger age and age-at-onset, shorter disease duration, lower medication requirements, and lower scores on psychiatric rating scales.ConclusionAlthough most patient- and caregiver-related subdomains remained unchanged after DBS, dissatisfaction among caregivers and marital problems may constitute a large risk for a well-functioning patient-caregiver dyad. Early recognition of potential problem situations may improve post-DBS care for both patients and caregivers.     

Factors contributing to caregiver burden in dementia in a country without formal caregiver support

Objectives: To investigate caregiver burden in dementia and explore factors associated with different types of burden in a country without formal caregiver support using a province in China as a case.Method: Cross-sectional questionnaire survey was used to collect data. One hundred and fifty-two family caregivers of people with dementia in community settings were recruited from 2012 to 2013 using convenience sampling. Objective burden was measured by caregiving hours and dementia-related financial burden. Subjective burden was measured and analysed using the Caregiver Burden Inventory and the Neuropsychiatric Inventory-Questionnaire. Multivariate regression models were employed to analyse factors associated with each type of subjective burden.Results: Five types of subjective burden were measured by the Caregiver Burden Inventory, namely, physical burden, emotional burden, time-dependence burden, developmental burden, and social burden. Caregiver distress, as a subjective burden, was measured by the Neuropsychiatric Inventory-Questionnaire and reported by relating to the severity of care recipients’ behavioural and psychological symptoms of dementia. This caregiver cohort showed a high level of physical, time-dependence, and developmental burdens, but a low level of emotional and social burdens. Factors contributing to each type of subjective burden measured by the Caregiver Burden Inventory differed from each other.Conclusion: The high level of objective and subjective burdens identified in this study suggests that government-funded formal caregiver support should be established and services should be designed to target different types of burdens and factors contributing to these burdens.     

Persisting burden predicts depressive symptoms in dementia caregivers

Dementia caregivers often report feeling burdened by caretaking responsibilities. Caregiver burden is correlated with caregiver depression, but the interrelationship between burden and depression requires further investigation. This study hypothesized that persisting elevated burden results in subsequent depressive symptoms. Participants were 33 dementia caregivers divided into two groups based on their Zarit Burden Interview score. The outcome variable was the total score on the Geriatric Depression Scale after 12 months. Caregivers who had persisting high burden showed significantly worse depression scores after 12 months compared to those caregivers without persisting high burden. Regression analysis controlling for baseline depression also demonstrated burden as a significant predictor of subsequent depression. These data suggest that longitudinal burden may be predictive of higher depressive symptoms; therefore, reducing burden could decrease depressive symptoms in dementia caregivers.     

Stress-related cognitive dysfunction in dementia caregivers

In a cross-sectional study, 31 dementia caregivers were compared to a group of 25 noncaregiving controls to evaluate whether the stress of being the primary caregiver of a person with dementia produces cognitive dysfunction. Cognitive differences were examined to evaluate the relationships between cognitive function and stress-related physiological and psychological measures to contribute information regarding its potential mechanism. The cognitive assessments were 2 measures of attention-executive function and 1 word list memory task. Physiological and self-rated stress-related measurements included cortisol, perceived stress, depression, self-efficacy, mindfulness, sleep quality, fatigue, and neuroticism. Caregivers performed worse than noncaregivers on the 2 attention tasks but not on the word list memory test. There was no interaction of caregiver status and age on cognitive performance. The caregivers and noncaregivers differed in morning salivary cortisol and most of the self-rated stress-related measures with the caregiver values reflecting greater stress. Of note, impaired sleep was the only potential mediator of the caregiver effect on cognitive performance in our small sample.     

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.