Primary Informal Caregivers Research Articles

Caregiving and mutuality among long-term colorectal cancer survivors with ostomies: qualitative study.

The cancer caregiving literature focuses on the early phases of survivorship, but caregiving can continue for decades when cancer creates disability. Survivors with an ostomy following colorectal cancer (CRC) have caregiving needs that may last decades. Mutuality has been identified as a relationship component that can affect caregiving. This paper discusses how mutuality may affect long-term ostomy caregiving. We conducted semi-structured, in-depth interviews with 31 long-term CRC survivors with ostomies and their primary informal caregivers. Interviewees were members of an integrated health care delivery system in the USA. We used inductive theme analysis techniques to analyze the interviews. Most survivors were 71years of age or older (67%), female (55%), and with some college education (54%). Two thirds lived with and received care from spouses. Caregiving ranged from minimal support to intimate assistance with daily ostomy care. While some survivors received caregiving far beyond what was needed, others did not receive adequate caregiving for their health care needs. Low mutuality created challenges for ostomy caregiving. Mutuality impacts the quality of caregiving, and this quality may change over time, depending on various factors. Emotional feedback and amplification is the proposed mechanism by which mutuality may shift over time. Survivorship care should include assessment and support of mutuality as a resource to enhance health outcomes and quality of life for survivors with long-term caregiving needs and their caregivers. Appropriate questionnaires can be identified or developed to assess mutuality over the survivorship trajectory.

Modeling Alzheimer Disease Through Functional Independence and Participation

The relationship between cognitive and functional impairment in Alzheimer Disease (AD) at the earliest stages of the disease is not well characterized. This study aimed at investigating such relationships along AD evolution by means of the Disability Assessment for Dementia (DAD). Consecutive pairs of AD outpatients and their primary informal caregivers were enrolled. Patients were evaluated by means of the Mini Mental State Examination and neuropsychological tests. A clinician completed the Clinical Dementia Rating Scale to stage dementia severity and interviewed the caregivers to complete the Neuropsychiatric Inventory to assess behavioral disturbances and the DAD to evaluate patients' functional competence. A total of 158 dyads were enrolled; the Mini Mental State Examination score was used to stratify patients into 4 groups (>24; 20 to 23.9; 10 to 19.9; <10) that were compared. The statistical analysis revealed that all the cognitive domains were positively related to functional independence, but only logical and executive functions seemed to predict autonomy. An intergroup comparison did not show significant differences in the DAD subscales measuring initiation, planning and organization, and performance. The role of education emerged, confirming the relevance of cognitive reserve. As the field moves toward earlier intervention in preclinical AD, the detection of early functional changes may drive the definition of trials on prevention or intervention for dementia.

Adaptation of a scale to measure coping strategies in informal primary caregivers of psychiatric patients.

Background The recovery process of a psychiatric patient is related to his primary informal caregiver's style of coping with stress. There is insufficient literature on validations of instruments that measure coping styles in this population. Objective To adapt and validate a scale to measure coping strategies in primary informal caregivers. Method The adapted scale was based on the Extreme Coping Scale of López-Vázquez and Marván. Items from that scale were adapted for application to informal caregivers. The scale was administered to 122 primary informal caregivers of patients from two psychiatric institutions in Mexico. Psychometric analyses were performed to determine the scale's properties. Results The scale was composed of 20 items (six less than in the original scale) and two factors: (i) active coping (Cronbach's alpha=.837) and (ii) passive coping (Cronbach's alpha=.718). Discussion The findings are discussed in the light of the importance of studying the relationship between coping styles and the well-being of both informal caregivers and psychiatric patients. Implications for practice The scale could be used by health practitioners and researchers to generate strategies to support the family caregiver, as well as to measure the results of interventions.

The effectiveness of creating an online life story book on persons with early dementia and their informal caregivers: a protocol of a randomized controlled trial

BackgroundDementia has a high burden for patients, informal caregivers and society. Given changes in care systems, more persons with dementia will live longer at home. However, living at home (with dementia) with a good quality of life is not easy to achieve. Dementia is often accompanied by neuropsychiatric symptoms like apathy, agitation, depression, and anxiety, which have a negative impact on quality of life. Whereas cognitive deterioration can hardly be influenced, it is possible to reduce neuropsychiatric symptoms. As autobiographical memories remain intact for a relatively long time in dementia, reminiscence interventions can promote feelings of pleasure and trust. The Online Life Story Book (OLSB) allows to digitally share memories (stories, pictures, video or audio fragments). The main objective is to study the effects of the OLSB on neuropsychiatric symptoms. The study has four secondary objectives: 1) to study the effectiveness of the intervention on the burden and quality of life of the primary informal caregiver; 2) to provide a preliminary health-economic evaluation; 3) to study the (time to) nursing home admittance as a longer term effect; 4) to provide a process evaluation.Methods and designA randomized controlled trial with individual randomization to one of two conditions is conducted: 1) intervention “Online Life Story Book”; 2) control condition (care as usual). Participants are persons with early dementia and their primary caregivers. In the intervention OLSB, a trained volunteer guides the participants through the process of putting together a timeline of their lives during 5 meetings within a period of 8-10 weeks. To assess the effects of the intervention on the primary outcome, neuropsychiatric symptoms, the Neuropsychiatric Inventory (NPI) will be assessed at three time points: before the intervention (baseline, T0), 3 months (T1) and 6 months (T2) post baseline.DiscussionWhen proven effective, the Online Life Story Book can be a valuable addition to the existing provision of care for persons with dementia and their informal caregivers.Trial registrationThis study has been approved by the Twente Medical Ethics Committee under the file number p16-04 (Dutch Trial Register: NTR5939, date of registration: 14 March 2016).

Crossing a Line: A narrative of risk-taking by older women serving as caregivers

BackgroundCaregiving carried out by adults for other adults is increasing around the world as the demographics of many industrialized countries shift toward an older population with escalating care needs toward the end of life. Although much has been written about caregiving, few studies document the experiences of providing care as narrated by the caregivers. AimTo explore the everyday experiences of older adults serving as primary informal caregivers to significant others. MethodsA process of narrative inquiry was used via repeated interviews with three older women caregivers providing care to family members or friends. The data were analyzed using storyboarding techniques and identifying critical turning points, culminating in a poetic transcription of the resulting narrative. ResultsThese caregivers describe a tension that exists across their experiences and communication with authorities on whom they rely for guidance and collaboration. Situations in which this tension pushes the caregivers to act in ways that represent risk to themselves or their care recipients are central to the collective narrative. Conclusion and significanceThe everyday experiences of older adult caregivers include not only familiar care routines, but also advocacy on behalf of care recipients and negotiations with external authorities, resulting at times in unwelcome risk-taking. Their narrative warrants attention due to the lack of power described by caregivers when acting on behalf of their care recipients and the need for those in authority to recognize their dilemma.

Caregiver–proxy reliability of the Igbo-culture adapted Maleka Stroke Community Reintegration Measure: a validation study

Objectives: This study was designed to determine the caregiver–proxy reliability of the Igbo-culture adapted urban version of the Maleka Stroke Community Reintegration Measure (I-MSCRIM).Methods: This was a validation study involving 74 consenting stroke survivors and their 74 primary informal caregivers consecutively recruited from selected tertiary hospitals in South-East Nigeria (Igboland). The I-MSCRIM was researcher-administered to the participants. Obtained data was analyzed using frequency counts, percentages, range, mean, standard deviation, Spearman rank order correlation, Mann–Whitney U test, Kruskal–Wallis test and Intra-class Correlation Coefficient. Alpha level was set at 0.05.Results: The mean ages of the stroke survivors (55.4% males) and their primary informal caregivers (41.9% males) were 50.14 ± 12.24 and 31.93 ± 10.9 years respectively. There was no significant difference in the community reintegration (CR) scores as rated by stroke survivors and their primary informal caregivers (p > 0.05). The correlations between stroke survivors’ and primary informal caregivers’ rated CR scores were all adequate and acceptable (ICC = 0.602–0.917). The discrepancy in the total CR scores between the two ratings was significantly influenced by primary informal caregivers’ educational attainment (k = 13.15; p < 0.01).Conclusion: The I-MSCRIM has acceptable caregiver–proxy reliability among Igbo stroke survivors in South-East Nigeria. This suggests that primary informal caregivers of stroke survivors can reliably estimate the CR of their care recipients when I-MSCRIM is administered to them. This will be useful when a stroke survivor cannot respond to I-MSCRIM.

The cost of dementia in an unequal country: The case of Chile.

We study the economic cost of dementia in Chile, and its variation according to socioeconomic status (SES). We use primary data from a survey of 330 informal primary caregivers who completed both a RUD-Lite and a socio-demographic questionnaire to evaluate the severity of dementia and caregiver’s burden. The costs of dementia are broken into three components: direct medical costs (medical care, drugs, tests); direct social costs (social service, daycare); and indirect costs (mostly associated to informal care). The average monthly cost per patient is estimated at US$ 1,463. Direct medical costs account for 20 per cent, direct social costs for 5 per cent and indirect costs for 75 per cent of the total cost. The mean monthly cost is found to be inversely related to SES, a pattern largely driven by indirect costs. The monthly cost for high SES is US$ 1,083 and US$ 1,588 for low SES. A multivariate regression analysis suggests that severity of dementia and caregiver’s burden account for between 49 and 70 per cent of the difference in the indirect cost across SES. However, between one-third and one-half of the variation across SES is not due to gradient in severity of dementia. Direct medical costs increase in higher SES, reflecting differences in purchasing power, while indirect costs are inversely related to SES and more than compensate differences in medical costs. Moreover, in lower SES groups, female caregivers, typically family members who are inactive in the labor market, mostly provide informal care. The average annual cost of dementia in Chile (US$ 17,559) is lower in comparison to high-income countries (US$ 39,595) and the proportion of cost related to informal cost is higher (74 per cent compared to 40 per cent). SES is a key determinant in the cost of dementia. In the absence of universal access to treatment, part of the social cost of dementia potentially preserves or increases income and gender inequality.

Poster Number: EI 25 - Primary Informal Caregivers of People with Dementia: Quality of Life and Care Issues

Poster Number: EI 25 - Primary Informal Caregivers of People with Dementia: Quality of Life and Care Issues

The TECH@HOME study, a technological intervention to reduce caregiver burden for informal caregivers of people with dementia: study protocol for a randomized controlled trial

BackgroundIt is estimated that global dementia rates will more than triple by 2050 and result in a staggering economic burden on families and societies. Dementia carries significant physical, psychological and social challenges for individuals and caregivers. Informal caregiving is common and increasing as more people with dementia are being cared for at home instead of in nursing homes. Caregiver burden is associated with lower perceived health, lower social coherence, and increased risk of morbidity and mortality. The aim of this trial is to evaluate the effects of information and communication technology (ICT) on caregiver burden among informal caregivers of people with dementia by reducing the need for supervision.Methods/designThis randomized controlled trial aims to recruit 320 dyads composed of people with dementia living in community settings and their primary informal caregivers. In the intervention group, people with dementia will have a home monitoring kit installed in their home while dyads in the control group will receive usual care. The ICT kit includes home-leaving sensors, smoke and water leak sensors, bed sensors, and automatic lights that monitor the individual’s behavior. Alerts (text message and/or phone call) will be sent to the caregiver if anything unusual occurs. All study dyads will receive three home visits by project administrators who have received project-specific training in order to harmonize data collection. Home visits will take place at enrollment and 3 and 12 months following installation of the ICT kit. At every home visit, a standardized questionnaire will be administered to all dyads to assess their health, quality of life and resource utilization. The primary outcome of this trial is the amount of informal care support provided by primary informal caregivers to people with dementia.DiscussionThis is the first randomized controlled trial exploring the implementation of ICT for people with dementia in a large sample in Sweden and one of the first at the international level. Results hold the potential to inform regional and national policy-makers in Sweden and beyond about the cost-effectiveness of ICT and its impact on caregiver burden.Trial RegistrationClinicalTrials.gov, NCT02733939. Registered on 10 March 2016.

Costs and Resource Use Associated with Alzheimer's Disease in Italy: Results from an Observational Study.

The GERAS II study aimed to assess societal costs and resource use associated with Alzheimer's disease (AD) for patients and their primary caregivers in Italy and Spain, stratified for different severity stages of AD at baseline. This report presents baseline results for Italy. GERAS II was a prospective, multicentre, observational study of routine care in AD. Community-dwelling patients attending specialist secondary care centres (memory clinics/Alzheimer's Evaluation Units) and their primary informal caregivers were recruited into the study. Patients were aged ≥55 years, presented within the normal course of care, had a diagnosis of probable AD and a Mini-Mental State Examination (MMSE) score of ≤26. Patients and caregivers were stratified according to patient AD dementia severity at baseline: mild, MMSE score 21-26; moderate, MMSE score 15-20; or moderately severe/severe, MMSE score <15. Data collected for patients and caregivers included demographics/clinical characteristics; current medication; patient cognitive, functional and behavioural assessments; patient and caregiver health-related quality of life (HRQoL); and patient and caregiver resource use. The costs associated with the resources used were calculated. Costs were broken down into patient healthcare costs, patient social care costs and caregiver informal care costs. Of 198 patients enrolled from Italy, 29 (15%) had mild AD dementia, 80 (40%) had moderate AD dementia, and 89 (45%) had moderately severe/severe AD dementia. Patient and caregiver characteristics showed some differences between AD dementia severity groups; for example, a numerically higher proportion of patients with mild and moderately severe/severe AD dementia were taking memantine compared with those with moderate AD dementia. Patient functioning and behavioural and psychological symptoms worsened with increasing AD dementia severity (p<0.05 between groups for all measures). No significant difference between the disease severity groups was observed in patient HRQoL, and there was no clear pattern in resource use. However, all measures of caregiver time spent helping the patient differed significantly between groups (p<0.05) and were highest in patients with moderately severe/severe AD dementia. Mean (standard deviation) total monthly societal costs per patient (2013 values) were €1850 (1901), €1552 (1322) and €2728 (2184) for patients with mild, moderate and moderately severe/severe AD dementia, respectively (p<0.001 between groups). Caregiver informal care costs were the greatest contributor to total societal costs and amounted to €1370, €1223 and €2223 per patient per month for mild, moderate and moderately severe/severe AD dementia groups, respectively (p<0.001 between groups). Total Italian societal costs generally increased with increasing AD dementia severity. However, costs were slightly lower for moderate than for mild AD dementia, possibly reflecting the observed unusual trend of greater caregiver time and higher memantine use in patients with mild versus moderate AD dementia.

Variables demográficas y clínicas relacionadas con la carga y el afrontamiento de los cuidadores de personas diagnosticadas de esquizofrenia

ObjectiveTo analyse of the relationship between burden of illness and coping strategies and the demographic variables of caregivers, and the demographic and clinical variables of people diagnosed with schizophrenia. MethodsMulticentre correlational cross-sectional study including 70 people diagnosed with schizophrenia, or a schizoaffective disorder, and 70 primary informal caregivers. They were evaluated using Zarit Caregiver Burden Inventory, Family Coping Strategies Questionnaire, Scale for the Assessment of Positive Symptoms, Scale for the Assessment of Negative Symptoms, and the brief Disability Assessment Scale. ResultsBurden of illness positively associated with patient impairment in occupational and social functioning, and negatively with education level. Avoidance, coercion and positive communication were positively associated with impairment in occupational and social functioning of patients. Social interest and friendships showed a positive association with the education level of caregivers. Spiritual assistance negatively correlated with impairment in social functioning and patient age, and resignation was negatively associated with length of the disorder and patient education level. ConclusionsBurden and dysfunctional coping strategies, such as avoidance and coercion, are associated with functional impairment of the patient. These findings suggest the need to provide support to caregivers, adjusted to the functional level of the patient, in order to prevent burden of care.

Implementation and (cost-)effectiveness of case management for people with dementia and their informal caregivers: results of the COMPAS study

Different forms of case management for dementia have emerged over the past few years. In the COMPAS study (Collaborative dementia care for patients and caregivers study), two prominent Dutch case management forms were studied: the linkage and the integrated care form. Evaluation of the (cost)effectiveness of two dementia case management forms compared to usual care as well as factors that facilitated or impeded their implementation. A mixed methods design with a) a prospective, observational controlled cohort study with 2 years follow-up among 521 dyads of people with dementia and their primary informal caregiver with and without case management; b) interviews with 22 stakeholders on facilitating and impeding factors of the implementation and continuity of the two case management models. Outcome measures were severity and frequency of behavioural problems (NPI) for the person with dementia and mental health complaints (GHQ-12) for the informal caregiver, total met and unmet care needs (CANE) and quality adjusted life years (QALYs). Outcomes showed a better quality of life of informal caregivers in the integrated model compared to the linkage model. Caregivers in the control group reported more care needs than those in both case management groups. The independence of the case management provider in the integrated model facilitated the implementation, while the rivalry between multiple providers in the linkage model impeded the implementation. The costs of care were lower in the linkage model (minus 22 %) and integrated care model (minus 33 %) compared to the control group. The integrated care form was (very) cost-effective in comparison with the linkage form or no case management. The integrated care form is easy to implement.

Mindfulness and Coping Are Inversely Related to Psychiatric Symptoms in Patients and Informal Caregivers in the Neuroscience ICU: Implications for Clinical Care.

To assess the correlation of psychosocial resiliency factors (mindfulness and coping) with symptoms of posttraumatic stress, anxiety, and depression in patients recently admitted to the neuroscience ICU and their primary informal caregivers. A descriptive, cross-sectional correlational study. Neuroscience ICU in a major medical center. A total of 78 dyads of patients (total n = 81) and their primary caregivers (total n = 92) from June to December 2015. Study enrollment occurred within the first 2 weeks of patient admission to the neuroscience ICU. None. Dyads completed self-report measures of mindfulness (Cognitive and Affective Mindfulness Scale-Revised), coping (Measure of Coping Status-A), posttraumatic stress (Posttraumatic Checklist-Specific Stressor), anxiety (Hospital Anxiety and Depression Scale-A), and depression (Hospital Anxiety and Depression Scale-D). Rates of clinically significant posttraumatic stress, anxiety, and depressive symptoms were high and comparable between patient and caregiver samples. Own psychological resilience factors and psychiatric symptoms were strongly correlated for both patients and caregivers. Depressive symptoms were interdependent between patients and their caregivers, and one's own mindfulness was independently related to one's partner's depressive symptoms. Rates of clinically significant psychiatric symptoms were high, equally prevalent in patients and caregivers, and interdependent between patients and their caregivers. For both patients and caregivers, psychological resiliency factors were associated with both self and partner psychiatric symptoms. Findings suggest that attending to the psychiatric health of both patients and caregivers in the neuroscience ICU is a priority and that patients and their caregivers must be considered together in a system to fully address either individual's psychiatric symptoms.

Association of impairments of older persons with caregiver burden among family caregivers: Findings from rural South India

AimIn India, owing to cultural norms and a lack of formal long-term care facilities, responsibility for care of the older person falls primarily on the family. Based on the stress process model, we assessed the association of type and number of impairments of older persons (∼primary stressors) with caregiver burden among their family caregivers in rural South India. MethodsAll impaired older persons (aged ≥60, with impairment in activities of daily living (ADL) or cognition or vision or hearing) residing in 8 villages in Bangalore district, Karnataka, India, and their primary informal caregivers were interviewed. Caregiver burden was measured using the Zarit Burden Interview (ZBI; higher score indicating greater perceived burden). Linear regression models, adjusting for background characteristics of older persons and caregivers, assessed the association of type of impairment (physical [Yes/No], cognitive [Yes/No], vision [Yes/No] and hearing [Yes/No]) and number (1 or 2 or 3 or 4) of older person impairments with caregiver burden. ResultsA total of 140 caregivers, caring for 149 older persons, were interviewed. The mean (standard deviation) ZBI score was 21.2 (12.9). Of the various older person impairments, ZBI score was associated only with physical impairment (β=6.6; 95% CI: 2.1–11.1). Relative to caregivers of older person with one impairment, those caring for an older person with all 4 impairments had significantly higher ZBI score (β=13.9; CI: 2.5–25.4). ConclusionCaregivers of older persons with multiple impairments, especially physical impairment, are vulnerable.

Providing care to relatives with mental illness: reactions and distress among primary informal caregivers.

BackgroundThe responsibility of caring for relatives with mental illness often falls on the family members. It has been reported that the reactions to or consequences of providing care are what rendered the role of a caregiver challenging and hence a source of distress. This present study thus aimed to identify socio-demographic correlates of caregiving experiences using the Caregiver Reaction Assessment (CRA) and to examine the associations between reactions to caregiving and psychological distress.MethodsA total of 350 caregivers with relatives seeking outpatient care at a tertiary psychiatric hospital were recruited for this study. Distress among caregivers was assessed using the Patient Health Questionnaire (PHQ-9). The CRA was administered to measure reactions from caregiving in four domains including impact on schedule and health (ISH), impact on finance (IF), lack of family support (LFS) and caregiver esteem (CE). Participants also completed a questionnaire that asked for their socio-demographic information. Multivariable linear regression analysis was first used with domains of CRA as outcome variables and socio-demographic variables as predictors in the models. The next set of multivariable linear regression analysis tested for the association between CRA domains and distress with CRA domain scores as outcome variables and PHQ-9 score as predictor, controlling for socio-demographic variables.ResultsSocio-demographic correlates of CRA domains identified were age, education, employment, income and ethnicity. Domain scores of CRA were significantly associated with PHQ-9 score even after controlling for socio-demographic variables. A higher distress score was associated with greater impact felt in the domain of ISH (β = 0.080, P < 0.001), IF (β = 0.064, P < 0.001), and LFS (β = 0.057, P < 0.001), and was associated with lower CE domain scores (β = −0.021, P < 0.05).ConclusionThis study identified several socio-demographic correlates of caregiving reaction in the different domains. Each of these domains was found to be significantly associated with caregiver distress. Higher distress was associated with stronger impact on the negative domains and a lower impact in the positive domain of caregiving reaction. Interventions such as educational programs at the caregiver level, and also promoting wider social care support in these domains may help to address caregiver distress.

Projecting the effects of long-term care policy on the labor market participation of primary informal family caregivers of elderly with disability: insights from a dynamic simulation model.

BackgroundUsing Singapore as a case study, this paper aims to understand the effects of the current long-term care policy and various alternative policy options on the labor market participation of primary informal family caregivers of elderly with disability.MethodsA model of the long-term care system in Singapore was developed using System Dynamics methodology.ResultsUnder the current long-term care policy, by 2030, 6.9 percent of primary informal family caregivers (0.34 percent of the domestic labor supply) are expected to withdraw from the labor market. Alternative policy options reduce primary informal family caregiver labor market withdrawal; however, the number of workers required to scale up long-term care services is greater than the number of caregivers who can be expected to return to the labor market.ConclusionsPolicymakers may face a dilemma between admitting more foreign workers to provide long-term care services and depending on primary informal family caregivers.Electronic supplementary materialThe online version of this article (doi:10.1186/s12877-016-0243-0) contains supplementary material, which is available to authorized users.

The development of a complex intervention in China: the 'Caring for Couples Coping with Cancer "4Cs" Programme' to support couples coping with cancer.

BackgroundAs the primary informal caregiver for cancer patients, spousal caregivers are a population at a high risk of hidden morbidity. The factors impacting couples coping with cancer are complex, and within spousal caregiver-patient dyads the impact is mutual. The aim of this study is to explain the process that led to the development of an acceptable, feasible, and potentially effective ‘Caring for Couples Coping with Cancer “4Cs” Programme’ to support couples coping with cancer as the unit of intervention in China.MethodsThe Medical Research Council’s (MRC) framework for developing and evaluating complex interventions was adopted to develop an intervention for couples coping with cancer. Three steps were taken in the process of developing the 4Cs programme, namely: (1) identifying the evidence base by conducting a series of extensive reviews of the relevant literature and conducting a focus group study; (2) identifying/developing a theory by proposing a preliminary Live with Love Conceptual Framework ‘P-LLCF’ for cancer couple dyads; and (3) modelling the process and outcomes of the 4Cs programme.ResultsThe programme that was developed is comprised of six individual sessions to be delivered by the researcher/therapists over 6 weeks. The main contents of the sessions of the 4Cs programme are: primary stressors (section 1); secondary stressors (section 2); dyadic mediator (section 3); dyadic appraisal (section 4); dyadic coping (section 5); and a programme overview (section 6). The emphasis of the programme is on supporting couples coping with cancer. A booklet was developed to provide the participants with easy access to written information about their common concerns in caring for loved ones with cancer.ConclusionsGuided by the MRC guidelines, a potentially effective, feasible, and acceptable 4Cs programme aimed at supporting couples coping with cancer as a dyad was developed. Future research is needed to pilot and evaluate the feasibility, modelling, and outcomes of this 4Cs programme.Electronic supplementary materialThe online version of this article (doi:10.1186/s12904-015-0062-7) contains supplementary material, which is available to authorized users.

Caregiver perceptions regarding the measurement of level and quality of care in Alzheimer's disease.

BackgroundPrimary informal caregivers play a critical role in the care and support of persons with Alzheimer’s disease (AD). A recent systematic review found little existing research into whether caregiver quality-of-life affects the level or quality of care that caregivers provide to their loved ones with AD. The dearth of research could be due to the absence of research questionnaires designed specifically to measure level or quality of care in AD. In the present study, we interviewed primary informal caregivers to obtain their views on the type of questionnaire that would be most suitable to assess level or quality of care in AD.MethodsA qualitative descriptive design was used. Purposive sampling was used to select participants. Participants were primary informal caregivers who were 18 years of age and older and were directly involved in the day-to-day care of community-dwelling (residing in private homes) persons with AD. A total of 21 caregivers were interviewed using focus groups or one-on-one interviews. Data were analyzed using qualitative content analysis.ResultsInformal caregivers identified a number of factors that researchers should consider when developing an instrument to measure level or quality of care that informal caregivers provide to their loved ones with AD. Overall, caregivers preferred a questionnaire that would employ a case management approach that recognizes the increase in care demands as patient health deteriorates, that acknowledges the importance of social support for caregivers, and that considers the role of hired help.ConclusionsThe information generated from this study can help in developing an instrument for measuring the level or quality of care provided. Such an instrument could guide nursing practice in supporting caregivers as they care for persons with AD.

Inverse Changes in Quality of Life for Patients and Caregivers After Implantation of a Ventricular Assist Device

Ventricular Assist Device (VAD) implantation is emerging as a main therapeutic option for patients with advanced heart failure (HF). In order to be eligible for VAD therapy, most centers require that patients designate a primary informal caregiver to assist with post-operative recovery, device management, and HF self-care. Although implantation typically results in improvements in quality of life (QOL) for the patient, little is known quantitatively about post-implantation changes in QOL for the caregiver.

Community-Dwelling Patients With Dementia and Their Informal Caregivers With and Without Case Management: 2-Year Outcomes of a Pragmatic Trial

ObjectiveTo evaluate outcomes for persons with dementia and primary informal caregivers of 2 types of implemented case management (intensive case management [ICMM] and linkage [LM] models) with no case management (control group). DesignA pragmatic trial using a prospective, observational, controlled, cohort study. SettingCommunity care in the Netherlands. ParticipantsA total of 521 dyads. InterventionCase management provided within one care organization (ICMM), case management where multiple case management organizations are present within one region (LM), and a group with no access to case management (control). MeasurementsNeuropsychiatric problems in persons with dementia assessed by the Neuropsychiatric Inventory (NPI) and psychological health in informal caregivers as measured with the General Health Questionnaire (GHQ-12). Secondary outcomes included care and support needs, quality of life, and institutionalization. Comparability of groups at baseline was secured by inverse-propensity-score-weighted mixed models. ResultsNo significant differences in changes in total NPI or GHQ-12 scores between the groups over 2 years were found. Secondary outcomes showed better quality-of-life scores for informal caregivers in the ICMM than the LM. Total needs, met and unmet care needs were significantly less in the ICMM compared with the control group. ConclusionNeither case management type affected clinical outcomes of dyads meaningfully. The ICMM has positive impact on caregivers' quality of life and patient's number of needs compared with persons in LM and persons without access to case management respectively.