Predictors of caregiving satisfaction in informal caregivers of people with dementia

ObjectiveThe prevalence of dementia is increasing and consequently the demands from families, institutions and healthcare system. Although a substantial amount of research on caregiving has emphasized the negative aspects of caregiving, specifically on caregiver burden and depression, less attention has been paid to the positive aspects of caregiving. The aim of the present work was to study the phenomenon of caregiving satisfaction in informal caregivers of people with dementia by assessing their likely predictors.MethodsA stress process model was used to study caregiver's satisfaction (measured using the Revised Caregiving Satisfaction Scale) on 101 informal caregivers of patients with dementia in relation to the caregiver's background and context, stress-related factors, and mediators.ResultsThe regression model has an adjusted R² of 0.20, which indicates that having a consanguinity relationship with the care recipient, suffering from lower levels of subjective burden, and managing individuals with severe cognitive impairment are the most important predictors of higher caregiving satisfaction.ConclusionInterventions focused on the enhancement of the caregiving satisfaction by increasing the understanding of the disease, should be especially addressed to caregivers without a consanguinity relationship and with high levels of subjective burden, and to those managing care recipients with mild or moderate stages of dementia.     

Mediating effect of social support on the relationship between resilience and burden in caregivers of people with dementia

ObjectiveThis study examined different predictive factors of burden in a sample of family caregivers of patients with dementia (PWD). In particular, the influence of social support and resilience on burden was tested, considering potential mediation effects.MethodsA total of 283 primary and family caregivers in Spain were evaluated using a standardized protocol to assess sociodemographic characteristics, clinical state of PWD and specific variables of caregiving and care providers.ResultsThe role of caregiver of PWD was more common in women, reporting significantly higher levels of burden than men. Resilience and social support accounted for most of the variance in burden. Furthermore, social support partially mediated the relationship between resilience and burden in caregivers.ConclusionsCaregivers’ resilience and social support are protective factors against burden in caregivers of PWD. Both factors should be considered for tailored interventions aimed at reducing the health costs of burden in this population.     

Making Memories: pilot evaluation of a new program for people with dementia and their caregivers

Objective: To evaluate the effects of the Alzheimer's Association's (NSW) Making Memories program on people living at home with dementia and their caregivers. Methods: Twenty‐four couples participated in the program that included 8 weekly education sessions, individual counselling, occupational therapy, 10 weekly diversional therapy sessions and ongoing monthly support groups. Ratings of psychological distress, quality of life and service use concerning the person with dementia, and depression, psychological distress, quality of life and physical health as regards to the caregiver were completed at baseline, 9 and 24 weeks. Results: Psychological distress decreased significantly over time in persons with dementia. Caregivers were significantly less distressed in relation to behavioural disturbance after controlling for the frequency of the behaviour immediately after the program, but this rose at the 6‐month follow‐up. For caregivers there was a non‐significant trend towards better quality of life but no improvement in psychological distress or depression. Conclusions: The Making Memories program decreased psychological distress in people with dementia. It had a short‐term beneficial effect on caregiver reactions to behavioural disturbance that was not maintained at follow‐up.     

Evaluation of an educational program for people with dementia and their caregivers

Objectives

This study evaluated the impact of a 5-week educational and supportive program for people newly diagnosed with dementia and their caregivers.

Methods

The study involved a pretest–posttest survey followed by interviews. Wilcoxon signed-rank test was conducted to determine postprogram changes. Kruskal–Wallis tests measured variation in responses between the people with dementia and their caregivers. Interviews were analysed using the NVivo software identifying themes against the program objectives of improving knowledge on dementia, coping strategies, communication and support services for people with dementia and their caregivers.

Results

Fifty-three dyads (n = 106) completed the survey. There were significant improvements in participants' level of understanding of dementia (z = −8.04, p < 0.001), knowledge of local services (z = −8.11, p < 0.001) and coping with life with dementia (z = −6.93, p < 0.001). These findings were consistent with interview data from 16 dyads.

Conclusions

The increasing number of people with dementia and their caregivers living in the community present health challenges. Programs that assist this group to function well in the community are important. Evaluation of this program indicated improved outcomes in relation to adjusting to life with dementia, enhancing knowledge, fostering communication and reducing feelings of isolation. Areas of improvement included lengthening the program with ongoing contact sessions with program facilitators and other participants. Given the positive effects of the program on this vulnerable group of people, it maybe useful for health-care agencies involved in dementia care to conduct this type of program as a matter of routine treatment and care for people newly diagnosed with dementia.     

Evaluation of a therapeutic education program for French family caregivers of elderly people suffering from major neurocognitive disorders: Preliminary study

The pertinence of a therapeutic program of education has been studied with regard to carers of patients suffering from major neurocognitive disorders. The program, adapted to the needs expressed by the carers, consisted of three workshops with a view to supplying general information about the pathologies, specific information on behavioral disorders, and specific aids to identify and manage their emotional reactions. The results of this preliminary study show a moderate significant benefit to the level of anxiety in the participants, taking into account the specific expectations of the carers and bringing to light further needs.     

The impact of befriending and peer support on family carers of people living with dementia: A mixed methods study

BackgroundVolunteer led befriending and peer support is provided to a wide range of people with varying needs. Despite large numbers of such schemes for carers of people with dementia, there is little evidence for any benefits they may offer. The aim of this research was to investigate the impact of befriending and peer support on carers of people with dementia and to explore their experiences of receiving the interventions using a mixed methods approach.MethodsNineteen carers of people with dementia were recruited from befriending and peer support services. Carers completed the Hospital Anxiety and Depression Scale (HADS), the Multidimensional Scale of Perceived Social Support (MSPSS) and UCLA Loneliness Scale at baseline, three months and six months. Of the 16 carers who completed the quantitative phase, eight took part in depth semi-structured interviews.ResultsA statistically significant increase in perceived social support from a significant other between baseline and three months was found (Z = 2.487, p = 0.013). Qualitative findings showed befriending and peer support to be important sources of emotional and social support for carers, which was facilitated by the volunteers’ experiential similarity.ConclusionVolunteer led befriending and peer support offers carers of people with dementia emotional and social support which enables them to cope better with challenges and continue caring. This has important implications for potentially reducing breakdowns in carer mental and physical health. Future research should explore whether these finding are replicable in other locations and in more diverse populations.     

Prognostic factors of effectiveness of a support program for caregivers of dementia patients

In a randomized controlled study, positive effects were found of a support program for caregivers of dementia patients. The aim of this study is to identify in a secondary analysis the prognostic factors of success of the support program by comparing characteristics of patients and primary caregivers for whom the support program was effective with those for whom the program was not effective (n = 49 pairs of patients and caregivers). The theoretically based individualized support program which is presented in this article, was most effective with regard to primary caregivers' sense of competence for females sharing a household with the dementia patient. The program was most effective in reducing the number of patient admissions when patients did not receive support from a district nurse and the primary caregivers experienced less emotional support from the informal network. A proactive approach by offering this flexible support before caregivers ask for support may prolong the stage in which they feel able to care for patients at home. Offering this support to females, who usually are supposed to care for the patient without assistance, may be both effective and efficient.     

Activities of daily living function and neuropsychiatric symptoms of people with dementia and caregiver burden: The mediating role of caregiving hours

ObjectiveDue to the presence of neuropsychiatric behaviors and the decreased ability for activities of daily living (ADLs), family caregivers experience high burden levels in caring for people with dementia (PWD). This study sought to test the mediating role of caregiving hours in association with PWDs’ ability for basic activities of daily living (BADL) function or neuropsychiatric behaviors and caregiver burden.MethodsThis study used two waves of survey data, collected between 2013 and 2016, from 186 PWD–caregiver dyads in a dementia clinic at a teaching hospital in southern Taiwan. Two sets of multiple linear regression models were used to analyze the relationships between the changes in patients’ BADL function, patients’ neuropsychiatric behaviors, caregiving hours in ADL (including BADL and Instrumental ADL), and caregiver burden (measured using Zarit Burden Interview). Bootstrapping methods were used to detect the mediating effects of caregiving hours in ADL if the 95% confidence interval (CI) did not cover 0.ResultsCaregiving hours in BADL mediated the relationship of PWDs’ BADL function and caregiver burden (effect = −0.0137, 95% bootstrap CI = −0.0379, −0.0003). However, such mediating effects were not found in the relationship of PWDs’ neuropsychiatric behaviors and caregiver burden.ConclusionsIn order to relieve caregiver burden, respite care services for caregivers for PWD should target services that assist with PWD’s BADL.     

Meta-analysis of psychosocial interventions for caregivers of people with dementia

OBJECTIVES: To review published reports of interventions for caregivers (CGs) of persons with dementia, excluding respite care, and provide recommendations to clinicians. DESIGN: Meta-analytical review. Electronic databases and key articles were searched for controlled trials, preferably randomized, published in English from 1985 to 2001 inclusive. Thirty studies were located and scored according to set criteria, and the interventions' research quality and clinical significance were judged. SETTING: Home or noninstitutional environment. PARTICIPANTS: Informal CGs-persons providing unpaid care at home or in a noninstitutional setting. MEASUREMENTS: The primary measures were psychological morbidity and burden. Other varied outcome measures such as CG coping skills and social support were combined with measures of psychological distress and burden to form a main outcome measure. RESULTS: The quality of research increased over the 17 years. Results from 30 studies (34 interventions) indicated, at most-current follow-up, significant benefits in caregiver psychological distress (random effect size (ES) = 0.31; 95% confidence interval (CI) = 0.13-0.50), caregiver knowledge (ES = 0.51; CI = 0.05-0.98), any main caregiver outcome measure (ES = 0.32; CI = 0.15-0.48), and patient mood (ES = 0.68; CI = 0.30-1.06), but not caregiver burden (ES = 0.09; CI = -0.09-0.26). There was considerable variability in outcome, partly because of differences in methodology and intervention technique. Elements of successful interventions could be identified. Success was more likely if, in addition to CGs, patients were involved. Four of seven studies indicated delayed nursing home admission. CONCLUSION: Some CG interventions can reduce CG psychological morbidity and help people with dementia stay at home longer. Programs that involve the patients and their families and are more intensive and modified to CGs' needs may be more successful. Future research should try to improve clinicians' abilities to prescribe interventions.     

Caregiver burden and fatigue in caregivers of people with dementia: Measuring human herpesvirus (HHV)-6 and -7 DNA levels in saliva

PurposeWe examined chronic fatigue, which has not been investigated in detail, in family caregivers for people with dementia.Methods and materialsForty-four community-dwelling family caregivers (the caregiver group: CG) and 50 elderly control participants (the non-caregiver group: NCG) participated in this study. We measured salivary human herpesvirus (HHV)-6 and -7 DNA levels and the Chalder fatigue scale (CFS) to assess levels of fatigue; we also measured the Center for Epidemiologic Studies-Depression Scale, Physical Activity Scale for the Elderly, Zarit Caregiver Burden Interview, Mini-Mental State Examination, Assessment of Motor and Process Skills, and Dementia Behavior Disturbance Scale.ResultsFor CG, the salivary HHV-6 DNA levels and CFS scores were significantly higher than those in NCG. The salivary HHV-6 DNA levels in CG were significantly correlated with depressive symptoms, the cognitive function of the patients, and the activities of daily living/instrumental activities of daily living (ADL/IADL) abilities of the patients. The CFS scores in CG significantly correlated with caregiver burden, depression symptoms, leisure physical activity, the number of other family caregivers, and the hours spent for caregiving per week, as well as with behavior disturbances and ADL/IADL abilities.ConclusionsThe salivary HHV-6 DNA levels may be added as a new biomarker for caregiver exhaustion. We concluded that fatigue assessments should be performed by not only a questionnaire, such as the CFS, but also by a biomarker search, such as HHV-6, when estimating the caregiver burden for family caregivers of people with dementia.     

The host‐homes program: an innovative model of respite for carers of people with dementia

Objective: To investigate the operation of an innovative community respite program run by the Brotherhood of St Laurence: the Banksia ‘host‐home’ program, which was designed to provide respite for up to six people with dementia in a care‐worker's home. The program was funded by the Commonwealth Department of Health and Aged Care as part of a funding program for pilot respite care projects. Method: Interviews were conducted with program staff, carers and care‐recipients (older people with dementia). Information from written records such as funding submissions was also used. Results: People using the program were those who experienced barriers utilising centre‐based programs for older people for a range of reasons including advanced dementia, hearing difficulties, difficulties in social interaction or confusion. Carers were very appreciative of the service, and care‐recipients appeared to enjoy the program immensely, citing caring staff, social contact and activities as things they appreciated most. Conclusions: The host‐home program provided an accessible respite option for those unable to use centre‐based services. It enabled more individually tailored activities, greater socialisation and greater attention from staff than possible in centre‐based services. The informal ‘homely’ feel of the program and the fact that relatives obviously enjoyed participating may have made carers feel more comfortable in using a respite service. Since the model creates the potential for cost‐shifting and because of difficulties in supervising staff in their own homes, guidelines and standards appropriate to host‐home programs should be established to ensure quality of care and to protect paid staff and service users.     

A novel telerehabilitation with an educational program for caregivers using telelecture is feasible for fall prevention in elderly people: A case series

Background:The importance of fall prevention rehabilitations has been well recognized. Recently telerehabilitation was developed, however, there have been no reports on telerehabilitation with direct support from specialists for fall prevention among the elderly. We herein reported telerehabilitation by caregivers educated by our novel educational program.Methods:Caregivers were educated with our educational program using a telelecture system and supported telerehabilitation following instructions from rehabilitation specialists in our university using the telemedicine system every two to four weeks for three months. Caregivers were assessed with our original questionnaire before and after the telelecture. Participants were assessed by the Berg Balance Scale (BBS), Timed Up & Go test (TUG test), Hand-held dynamometer (HHD) and Mini-Mental State Examination (MMSE) before and after telerehabilitation. Wilcoxon''s signed-rank test was used for the statistical analyses. A value of P<.05 was considered statistically significant.Results:Nine elderly people were enrolled. The mean age was 84.7 (78–90) years old and the sex ratio was 1:8 (males:females). The average number of telerehabilitation sessions was 4.7. The average score of nineteen caregivers before the lecture was 15.3, while that after the lecture was 18.3. Caregivers’ understanding was significantly increased after the telelecture (P<.001). No adverse events occurred during the study period. The median values of the BBSs, TUG test, right and left HHD and MMSE before and after 3 months’ telerehabilitation were 43 (95% confidence interval [CI]: 40.10, 49.01) and 49 (95% CI: 41.75, 50.91), 17.89 (95% CI: 15.51, 23.66) and 18.53 (95% CI: 14.56, 25.67), 7.95 (95% CI: 4.38, 10.14) and 11.55 (95% CI: 7.06, 13.55), 9.85 (95% CI: 6.79, 12.59) and 13.20 (95% CI: 7.96, 14.42), and 19 (95% CI: 12.34, 21.66) and 16 (95% CI: 10.81, 21.00), respectively. Although approximately half of the participants showed improvement in the BBS, TUG test, right and left HHD and MMSE, no significant changes were observed (P=.7239, P=.3446, P=.1023, P=.3538 and P=.8253, respectively).Conclusions:Our telerehabilitation program exhibited significant effects in elderly people and improved the degree of understanding concerning rehabilitation among caregivers in facilities for elderly people.     

Latent growth curve analyses of emotional support for informal caregivers of vulnerable persons with HIV/AIDS

People living with HIV/AIDS (PLHIV) have growing rates of morbidity and need for informal care, especially among drug-using PLHIV. Informal caregivers, or persons providing unpaid emotional or instrumental support, have protective effects on the health and well-being of PLHIV. Research suggests that social support, including care recipients' reciprocity of emotional support, is important to sustained caregiving. This study examined HIV caregivers' perceived emotional support over time from their current or former injection drug-using care recipients. Data were from baseline, 6-month, and 12-month follow-up of the BEACON study. Latent growth curve analysis showed a decline in reciprocated emotional support reports over time, particularly among caregivers themselves HIV seropositive or currently substance using. Researchers should develop interventions to strengthen the caregiving relationship by promoting reciprocity of emotional support, with implications for sustaining caregiving to vulnerable PLHIV and improving their health outcomes. Interventions should especially target dyads in which caregivers are also HIV positive or using substances.     

Social support exchanges in a social media community for people living with HIV/AIDS in China

In recent years, social media has become an important source of social support. People living with HIV/AIDS in China created an online support group (the HIV/AIDS Weibo Group) on Weibo, the Chinese version of Twitter, in January 2011. The current study examined how social support transmitted in this social media community. First, messages over five successive weeks (2 May 2011 to 13 June 2011) were randomly selected from the HIV/AIDS Weibo Group on Weibo. Next, we employed social network analysis to map the HIV/AIDS Weibo Group’s structure and to measure the study variables. After that, a multivariate analysis of variance was applied to examine the influence of frequency of contact and reciprocity on informational and emotional social support exchanged in each dyad. The results revealed that pairs with a high level of contact frequency or reciprocity exchanged more informational support than do pairs with a low level of contact frequency or reciprocity. Moreover, dyadic partners with high frequency of contact exchanged a larger amount of emotional support than those with a low level frequency of contact; but strongly reciprocal dyads did not exchange significantly more emotional social support than their counterparts with a low level of reciprocity.     

Effects of an outpatient education program in patients with uncontrolled asthma

OBJECTIVE:

To evaluate the effects of an outpatient education program in patients with uncontrolled asthma.

METHODS:

This was an uncontrolled study evaluating an educational intervention and involving patients with uncontrolled asthma ≥ 14 years of age. The participants completed a questionnaire designed to assess the level of asthma control, the inhalation technique, and quality of life. All of the patients underwent pulmonary function testing, after which they participated in an education program consisting of one 45-min face-to-face session, followed by phone interviews at two, four, and eight weeks. The participants were reevaluated after three months.

RESULTS:

Sixty-three patients completed the study. There was a significant improvement in the level of asthma control (p < 0.001). Of the 63 patients, 28 (44.4%) and 6 (9.5%) were classified as having partially controlled asthma and controlled asthma, respectively. The mean FEV₁ was 63.0 ± 20.0% and 68.5 ± 21.2% of the predicted value prior to and after the educational intervention, respectively (p = 0.002), and all of the quality of life scores improved (p < 0.05 for all). The same was true for the proportion of patients prior to and after the educational intervention using the proper inhalation technique when using metered dose inhalers (15.4% vs. 46.2%; p = 0.02) and dry powder inhalers (21.3% vs. 76.6%; p < 0.001). The logistic regression analysis revealed that an incorrect inhalation technique identified during the first evaluation was independently associated with a favorable response to the educational intervention.

CONCLUSIONS:

This study suggests that an outpatient education program for asthma patients improves the level of asthma control, lung function parameters, and quality of life. An incorrect inhalation technique identified during the first evaluation was predictive of a favorable response to the educational intervention.     

Effect of a noninvasive ventilatory support during exercise of a program in pulmonary rehabilitation in patients with COPD

Background:

Breathlessness is the most common symptom limiting exercise in patients with chronic obstructive pulmonary disease (COPD). Exercise training can improve both exercise tolerance and health status in these patients, intensity of exercise being of key importance. Nevertheless, in these patients extreme breathlessness and/or peripheral muscle fatigue may prevent patients from reaching higher levels of intensity.

Study objective:

This study was to determine whether inspiratory pressure support (IPS) applied during sub maximal exercise could enable individuals with severe but stable COPD to increase their exercise tolerance.

Participants:

Twelve subjects with severe stable COPD (mean (SD): age = 63(8.2) years; FEV₁ = 0.89(0.42) L (34)% predicted; FEV₁/FVC = 0.31(0.07) only nine subjects completed the study.

Intervention:

Each subject completed ten sessions of cycling at 25%–50% of their maximum power without NIVS and another ten sessions using NIVS.

Measurements and results:

Dyspnea was measured using Borg scale. Subjects reached high levels of dyspnea 4.7 (1.81) during the sessions without NIVS vs low levels of dyspnea during the sessions using NIVS 1.3 (0.6). Exercise time during the sessions without NIVS and with NIVS was 19.37 (3.4) and 33.75 (9.5) min, respectively. Maximal workload during the sessions without NIVS and with NIVS was 27 (3.7) and 50 (10.5) watt, respectively.

Conclusion:

We conclude that IPS delivered by nasal mask can improve exercise tolerance and dyspnea in stable severe COPD patients and hence this mode of ventilatory support may be useful in respiratory rehabilitation programs.     

An assessment of counselling and support services for people living withHIV in Gauteng,South Africa: findings of a baseline study

An increasing body of literature shows that HIV/AIDS and mental health issues are closely related. In spite of this, the mental health correlates of HIV and AIDS remain largely unacknowledged and under-researched in sub-Saharan Africa. Furthermore, despite guidelines by the World Health Organization insisting that counselling with integrated psychological or mental healthcare helps people living with HIV or AIDS (PLHIV) to deal with their disease status and thus increases their quality of life, the services and interventions to address this significant health burden are still lacking, making the HIV/AIDS and mental-health nexus a sizeable social services and health problem. As part of an ongoing research programme at the University of the Witwatersrand to address this, the article reports on a baseline study that sought to identify the nature and extent of counselling and support services available to PLHIV in Gauteng Province. The study found that available counselling and support services are focused largely on voluntary counselling and testing for HIV (VCT), which appears to be primarily an educational intervention rather than a therapeutic modality. Service providers within this framework have inadequate knowledge and capacity to identify mental health problems. The findings of this study point to a strong need for integrated HIV/AIDS services that include assessment of mental health and substance abuse problems and their appropriate management. Appropriate training and supervision of healthcare workers and counsellors is an essential component in the identification and referral of HIV patients with mental health problems.