The trajectory of caregiver burden and risk factors in dementia progression:A systematic review

Background: Caring for patients with dementia at home is often a long-term process, in which the independence of the patient declines, and more responsibility and supervision time is required from the informal caregiver. Objective: In order to minimize and reduce caregiver burden, it is important to explore its trajectory and the accompanying risk factors as dementia progresses; the objective of this systematic review. Methods: PRISMA guidelines were followed in this systematic review. Three databases, PubMed, PsycINFO, and EMbase, were systematically searched in November 2019 using specific keywords. Results: 1,506 hits emerged during the systematic search but only eleven articles actually met the inclusion criteria for this review. The trajectory of caregiver burden is highly variable and depends on multiple factors. Important risk factors included: patients’ behavioral and neuropsychiatric symptoms, and their decline in functioning in (I)ADL; the caregiver’s age, gender, and physical and mental health; and, within the dyads (patient/caregiver), cohabitation and kinship. Conclusion: There is no one-size-fits-all for predicting how caregiver burden will change over time, but specific factors (like being a spouse and increased behavioral impairment and decline in functional status in the patient) may heighten the risk. Other factors, not yet comprehensively included in the published studies, might also prove to be important risk factors. Future research in the field of reducing caregiver burden is recommended to integrate the patient, caregiver, and context characteristics in the trajectory of caregiver burden, and to assess more clearly the phase of the dementia progression and use of external resources

A systematic review investigating fatigue, psychological and cognitive impairment following TIA and minor stroke:protocol paper

Approximately 20,000 people have a transient ischemic attack (TIA) and 23,375 have a minor stroke in England each year. Fatigue, psychological and cognitive impairments are well documented post-stroke. Evidence suggests that TIA and minor stroke patients also experience these impairments; however, they are not routinely offered relevant treatment. This systematic review aims to: (1) establish the prevalence of fatigue, anxiety, depression, post-traumatic stress disorder (PTSD) and cognitive impairment following TIA and minor stroke and to investigate the temporal course of these impairments; (2) explore impact on quality of life (QoL), change in emotions and return to work; (3) identify where further research is required and to potentially inform an intervention study

Exposing people with dementia to biodynamic light:The impact of biodynamic lighting on neuropsychiatric symptoms

Background: The increase of neuropsychiatric symptoms in people with dementia count for 46% of the transit to more controlled environments. Medication to repress these symptoms is widely used, but the side effects are significant, and the effect at the start is not predictable. Research that aims at non-pharmacological interventions is important. One of the promising non-pharmacological interventions is lighting. In this study, the effectiveness of dynamic lighting, lighting with variable intensity and correlated color temperature, on neuropsychiatric symptoms in older people with dementia is studied. Question: It was hypothesized that the exposure to dynamic lighting would decrease the amount and/or the severity of the neuropsychiatric symptoms. Methods: A dynamic lighting innovation designed to stimulate a regular and healthy circadian rhythm was installed in the common area of a clinical setting. Two conditions of 21 days with and 21 days without exposure to dynamic lighting were monitored. After each condition, measures of presence, the severity of symptoms and emotional impact were collected using the Neuro Psychiatric Inventory-Questionnaire (NPI-Q). Results: Eighteen participants were included in the research and completed a condition with and without exposure to dynamic lighting. Per the respondent, the total index of severity of neuropsychiatric symptoms was lower after exposure. Also on a group level, a tendency (p=.187) was found for decreasing the total index of severity of the neuropsychiatric symptoms in the condition that received dynamiclighting. Significance was only found in the severity scores on the symptom disinhibited behavior (p=.01). Conclusion: A dynamic lighting intervention can be used to decrease the severity of neuropsychiatric symptoms, more specific disinhibited behavior. This is important because disinhibited behavior is related to a disturbed circadian rhythm, is distressing for caregivers and can accelerate the process leading to institutionalization. The findings in this study implicate the importance of future research on the possibilities of dynamic lighting in dementia

Exposing people with dementia to biodynamic light: The impact of biodynamic lighting on neuropsychiatric symptoms

Background: The increase of neuropsychiatric symptoms in people with dementia count for 46% of the transit to more controlled environments. Medication to repress these symptoms is widely used, but the side effects are significant, and the effect at the start is not predictable. Research that aims at non-pharmacological interventions is important. One of the promising non-pharmacological interventions is lighting. In this study, the effectiveness of dynamic lighting, lighting with variable intensity and correlated color temperature, on neuropsychiatric symptoms in older people with dementia is studied. Question: It was hypothesized that the exposure to dynamic lighting would decrease the amount and/or the severity of the neuropsychiatric symptoms. Methods: A dynamic lighting innovation designed to stimulate a regular and healthy circadian rhythm was installed in the common area of a clinical setting. Two conditions of 21 days with and 21 days without exposure to dynamic lighting were monitored. After each condition, measures of presence, the severity of symptoms and emotional impact were collected using the Neuro Psychiatric Inventory-Questionnaire (NPI-Q). Results: Eighteen participants were included in the research and completed a condition with and without exposure to dynamic lighting. Per the respondent, the total index of severity of neuropsychiatric symptoms was lower after exposure. Also on a group level, a tendency (p=.187) was found for decreasing the total index of severity of the neuropsychiatric symptoms in the condition that received dynamiclighting. Significance was only found in the severity scores on the symptom disinhibited behavior (p=.01). Conclusion: A dynamic lighting intervention can be used to decrease the severity of neuropsychiatric symptoms, more specific disinhibited behavior. This is important because disinhibited behavior is related to a disturbed circadian rhythm, is distressing for caregivers and can accelerate the process leading to institutionalization. The findings in this study implicate the importance of future research on the possibilities of dynamic lighting in dementia

Life satisfaction two-years after stroke onset: the effects of gender, occupational status, memory function and quality of life among stroke patients (Newsqol) and their family caregivers (Whoqol-bref) in Luxembourg

Life satisfaction (LS) of cerebrovascular disease survivors and their family caregivers may relate to socioeconomic factors, impaired functions, health-related quality of life (QoL), but their respective influences remain unclear. This study assessed, two years post-stroke onset, the effects of these factors on patients' LS and family caregivers' LS in Luxembourg. METHODS: All stroke patients admitted to all hospitals in Luxembourg were identified by the 'Inspection Général de la Sécurité Sociale' using the only national system database for care expenditure reimbursement. Their diagnosis was confirmed by medical investigator. The sample included ninety four patients living at home having given consent (mean age 65.5 years) and sixty two main caregivers (mean age 59.3 years). Questionnaires were completed during face-to-face interviews. LS was assessed via European single question (range 1-10), survivors' QoL via Newsqol (11 dimensions), and caregivers' QoL via Whoqol-bref (4 domains) (range 0-100). Data were analysed using multiple regression models. RESULTS: Two years after stroke onset, 44.7% of patients suffered from impaired sensory function, 35.1% from impaired motor function, and 31.9% from impaired memory function. Mean patient' LS was 7.1/10 (SD 1.9). It was higher in women (+12.4) and lower among unemployed socioeconomically active patients (-13.1, vs. retired people). Adjusted for sex, occupation, impaired motor and memory functions, LS positively correlated with scores of Newsqol feelings, sleep, emotion, cognition and pain dimensions (slopes 0.20 to 0.31), but did not correlate with those of caregivers' Whoqol-bref domains. Family caregiver' LS was 7.2 (SD 1.7). It was lower in those with patients suffering from impaired memory function (-12.8) as well as from feelings and emotion issues (slopes 0.22). It was associated with all caregivers' Whoqol-bref domains (physical health, psychological health, environment, and social relationships) (slopes 0.53 to 0.68). CONCLUSIONS: Two-year post-cerebrovascular disease patient' LS was associated with gender, occupation, and impaired memory function. It correlated with feelings, sleep, emotion, cognition, and pain issues. Family caregivers of patients with impaired memory function had lower LS. Family caregiver' LS correlated with dimensions of patients' feelings (less independent, yourself, life changed, depressed, useless, less control because of stroke) and emotion (get more emotional, fear of another stroke or to become dependent on others), and with their own QoL. LS, Newsqol, and Whoqol appeared to be appropriate tools. Our findings may be useful for policy makers in relation to family and medical-social issues of stroke home-based rehabilitation