This study aimed to explore the views of family carers of people living with dementia from ethnic minority groups and their therapists on internet-delivered, self-help acceptance and commitment therapy for family carers (iACT4CARERS), enhanced with additional therapist guidance. To achieve this, a qualitative approach with semi-structured interviews was employed with ethnic minority carers who completed Enhanced iACT4CARERS (n=9) and therapists who supported them throughout the programme (n=5). The interviews were audio-recorded, transcribed and analysed using framework analysis. Four over-arching themes were identified: (1) Value of the programme to ethnic minority carers, (2) Barriers for ethnic minority carers, (3) Sense of connectedness through written feedback, and (4) Sense of connectedness through one-to-one sessions. Theme 1 reflected that ethnic minority carers valued ACT techniques, highlighting their usefulness and simplicity, leading to perceived benefits. Theme 2 revealed the irrelevance of examples provided of carer experiences throughout the programme due to differences in family carers’ experiences of providing care within ethnic minority communities. Theme 3 highlighted that carers’ engagement with the programme was facilitated by feelings of validation and encouragement received from their therapist via weekly written feedback. Finally, Theme 4 highlighted that additional one-to-one support sessions allowed both carers and therapists to develop strong therapeutic relationships. This enhanced subsequent text-based online interactions, allowing carers to be more open and engaged. Also, therapists reported that a strong sense of connectedness helped them to tailor their feedback. Enhanced iACT4CARERS that uses carers’ experiences more relevant to ethnic minority communities may be more acceptable.

1. (1) To understand the views of family carers of people living with dementia from ethnic minority groups and their therapists on internet-delivered, self-help acceptance and commitment therapy (ACT), which has been found to be feasible and acceptable with White British carers.

2. (2) To understand whether additional one-to-one support can help develop effective therapeutic relationships and thus improve the experiences of carers in completing the programme.

3. (3) To learn whether any cultural adaptations are needed to improve the acceptability of internet-delivered self-help ACT among this population.

High levels of caregiver burden (CB) are experienced by informal caregivers of pediatric patients with cancer. There is increasing evidence highlighting the extent of CB across sub-Saharan African countries, although there remains lack of interventions that target improvements in their experience. This study aimed to determine the impact of a structured psychoeducation program on caregivers’ outcomes relating to preparedness to provide care, burden of caregiving, and quality of life (QoL).

This quasi-experimental (pre-and-posttest) design, involved family caregivers of children on admission for cancer treatment in 4 Nigerian tertiary hospitals. Eligible participants received 2 structured, psychoeducational training sessions delivered by a multidisciplinary oncology team, focusing on the management of patients’ condition, spiritual care, self-care, and support.

Subjects were mainly female (79.5%) and mostly mothers to children undergoing cancer treatment (74.7%). Commonest cancer type was acute lymphoblastic leukemia (23.9%) with evidence of metastatic disease found in 9.6% of children. Significant improvements were observed between pre- and posttest for unmet needs (z = −9.3; p < 0.001), preparedness for caregiving in palliative care (PCPC) (z = −7.0; p < 0.001), and overall QoL (z = −7.3; p < 0.001). A significant reduction in CB was also reported (z = −8.7; p < 0.001).

This psychoeducational intervention (PEI) resulted in significant improvements in unmet needs, CB and significant improvements in PCPC. However, a reduction in QoL of the family caregivers was also observed. Findings from this study should encourage the use of well-crafted PEIs, delivered within hospital settings to promote improvements in outcomes for informal caregivers of hospitalized children suffering from cancer, in an African context. Further intervention development is required to better understand intervention components influencing changes in outcomes, while exploring feasibility testing and adaptation to similar settings in Nigeria and within Africa.

Informal caregivers of people with dementia are at high risk of developing mental and physical distress because of the intensity of the care provided. iSupport is an evidence-based online program developed by the World Health Organization (WHO) to provide education and support to informal everyday care. The study aims to describe the process and results of iSupport cultural adaptation in Switzerland.

We used a mixed-methods design, with a community based participatory research approach. The adaptation of iSupport followed WHO adaptation guidelines and developed into five steps: content translation, linguistic and cultural revision by the members of the Community Advisory Board, validation with health professions faculty, validation with formal and informal caregivers, and fidelity check appraisal by members of the WHO.

Findings from each phase showed and consolidated the adjustments needed for a culturally adapted Swiss version of iSupport. We collected feedback and implemented changes related to the following areas: language register and expressions (e.g., from lesson to chapter; from suffering from dementia to affected by dementia); graphics and illustrations (e.g. from generalized objects’ illustrations to featured humans’ illustrations); exercises and case studies (e.g., from general, non-familiar scenarios to local and verisimilar examples); and extra features to add to the online version (e.g., short tailoring assessment questionnaire, interactive forum section, glossary). Additionally, based on the suggestions from the interviews with health professions faculty, we also created a training of trainers (ToT) version of iSupport for health care professionals.

Our results show that adopting a community based participatory approach and collecting lived experiences from the final users and stakeholders is essential to meet local needs and to inform the further development, testing and implementation of an online evidence-based intervention to a specific cultural context.

Alzheimer’s disease is a chronic neurodegenerative disorder that results in total cognitive impairment and functional decline. Family members are the most usual caregivers worldwide, resulting in an increasing total burden and a subsequent degradation of their quality of life.

To evaluate the burden of care and quality of life among informal caregivers to Alzheimer patients in Egypt.

A descriptive research design was used. The study was conducted at outpatient clinics of El-Abbasya Mental Hospital in Cairo, Egypt. This study included 550 informal caregivers of Alzheimer patients. Data were gathered through questionnaires using the Sociodemographic Profile of Family Caregivers, an adopted version of the Montgomery Borgatta Caregiver Burden scale, and Health-Related Quality of Life Scale.

Nearly three quarters (73.5%) of the informal caregivers were female. Additionally, the physical burden among the informal caregivers was the highest (21.58 ± 8.13), while the psychological burden was the lowest (7.48 ± 25.35). Besides, around one-third (30%) of the informal caregivers had a total poor quality of life.

Total burden among informal caregivers of Alzheimer patients was relatively high (64.71 ± 26.86). Moreover, less than one-tenth (8%) of the informal caregivers for Alzheimer’s patients had a good quality of life, whereas more than half (62%) of them had an average quality of life. In the Egyptian context, ongoing health education initiatives for those who care for Alzheimer patients are essential, and additional research employing large study sample sizes in varied contexts is strongly advised.

1. (1) To understand which factors facilitated therapists’ positive perceptions and acceptability of providing internet-delivered guided self-help ACT (iACT4CARERS).

2. (2) To understand what challenges acted as barriers to therapists’ positive perceptions and acceptability of providing iACT4CARERS.

3. (3) To learn what aspects of the training and the intervention can be refined to improve the acceptability to therapists in trials involving internet-delivered guided self-help interventions for family carers.

Lack of palliative care knowledge among caregivers may pose an access barrier for cognitively impaired older adults, who may benefit from the specialized care. Therefore, this study aims to examine the effectiveness of an educational intervention in improving palliative care knowledge among informal caregivers of cognitively impaired older adults.

Using a one-group, pre- and post-test intervention design, this study implemented an individual, face-to-face educational intervention with an informational brochure for 43 informal caregivers of chronically or seriously ill older adults (50+) with cognitive impairment, recruited from communities in West Alabama. Their level of knowledge about palliative care was assessed by the Palliative Care Knowledge Scale (PaCKS). The pre- and post-test scores were compared by the Wilcoxon signed-ranks test, and the racial subgroup (Whites vs. Blacks) comparison was made by the Mann–Whitney U test.

There was a statistically significant difference between the pre- and post-test scores (z = 5.38, p < 0.001), indicating a statistically significant effect of the educational intervention in improving palliative care knowledge among participants. There was a significant difference (U = 143, p < 0.05) between Whites and Blacks in the pre-test, which, however, disappeared in the post-test (U = 173.50, p > 0.05), suggesting that the amount of increased PaCKS scores were significantly greater for Blacks (Mdn = 9.50) than for Whites (Mdn = 4.00, U = 130.50, p < 0.05).

This study demonstrated that a one-time educational intervention can improve the level of palliative care knowledge among informal caregivers of chronically or seriously ill older adults with cognitive impairment, particularly among Black caregivers. Therefore, further educational efforts can be made to promote palliative care knowledge and reduce racial disparities in palliative care knowledge and its use.

Informal caregiving may likely increase as the number of cancer survivors grows. Caregiving responsibilities can impact caregivers’ quality of life (QOL). Understanding the current state of the science regarding caregiving QOL could help inform future research and intervention development.

A systematic literature review in PubMed/Medline examined research on QOL among informal cancer caregivers and related psychosocial health outcomes. Original research articles in English, published between 2007 and 2017 about caregivers (aged >18 years) of adult cancer patients in the United States were included. Abstracted articles were categorized according to caregiving recipient's phase of survivorship (acute, middle to long-term, end of life/bereavement).

Of 920 articles abstracted, 60 met inclusion criteria. Mean caregiver age ranged from 37 to 68 with the majority being female, non-Hispanic white, with at least a high school degree, and middle income. Almost half of the studies focused on caregivers who provided care for survivors from diagnosis through the end of active treatment. Studies examined physical health, spirituality, psychological distress, and social support. Differences in QOL were noted by caregiver age, sex, and employment status.

Additional research includes the examination of the needs of diverse cancer caregivers and determines how additional caregiver characteristics (e.g., physical functioning, financial burden, etc.) affect QOL. This includes studies examining caregiver QOL in the phases following the cessation of active treatment and assessments of health systems, support services, and insurance to determine barriers and facilitators needed to meet the immediate and long-term needs of cancer caregivers.

As a degenerative disease, the progression of dementia needs continued care provision and poses both psychological and financial burden for family caregivers of persons with dementia (PWD). This study seeks to compare predictors of care costs and caregiver burden, and to identify modifiable factors that could alleviate the burden faced by dementia caregivers.

This study interviewed 231 PWD–caregiver dyads in a dementia clinic at a teaching hospital in southern Taiwan in 2013. A follow-up study was conducted a year later, and 167 dyads completed the second interview. Data collected included PWD characteristics, caregiver characteristics, relationship to PWD, and social support to caregivers. Caregiver burden was measured with the Zarit Burden Interview instrument. The association between each predictor variable and cost of care and caregiver burden scores was examined using linear mixed models.

Predictors of care costs were found to be different from predictors of caregiver burden: functional declines measured by Katz’s activities of daily living (ADL) scale were associated with total cost as compared to behavioral disturbance measured by Neuropsychiatric Inventory (NPI), which showed no impact on care costs. However, NPI was a significant predictor of caregiver burden. Caregivers who were better-off financially also reported significantly lower caregiver burden.

Since predictors of care costs were different from the predictors of caregiver burden, providing training to caregivers in addressing PWD’s behavioral disturbance and proving financial assistance to low income caregivers could be effective in reducing caregiver burden.

We aimed to analyze the relationship between optimism and quality of life (QoL) among informal caregivers of patients with dementia (PWD).

In this cross-sectional study, a hierarchical multiple linear regression analysis was used to determine the association between optimism and caregiver's QoL after controlling the effect of different covariates, including burden.

A sample of 130 PWD and their informal caregivers underwent a comprehensive protocol of assessment.

Caregivers completed the Battery of Generalized Expectancies of Control Scales, the Zarit Burden Interview, and the World Health Organization Quality of Life-Brief as measure of QoL. Optimism was estimated based on the combination of three expectancies of control, namely, self-efficacy, contingency, and success.

QoL correlated positively with optimism and negatively with burden. Optimism predicted each dimension of QoL, even after controlling for the effect of sociodemographic, care-recipients’ clinical covariates, and burden in all models.

Optimism consistently predicted well-being and QoL in informal caregivers of PWD.

With a rise in the aging population and a consequential rise in persons diagnosed with dementia comes an increase in the number of informal caregivers who are caring for a loved one. The objective of the proposed study was to assess the neurocognitive and psychological effects of caring for a person with dementia or a related neurodegenerative disease in a sample of Canadian informal caregivers.

Fifty-seven informal caregivers of a person with dementia or a related neurodegenerative disease (mean age = 66.26, SD = 7.55) and 97 non-caregivers (mean age = 69.16, SD = 4.84) were recruited. Neuropsychological measures of attention, cognitive flexibility, verbal learning, delayed recall, and verbal fluency were examined, and questionnaires related to perceived stress, quality of life, mood, and self-esteem were administered.

Caregivers made more errors on a measure of cognitive flexibility (p = 0.02), generated fewer words on measures of phonemic fluency (p < 0.01) and semantic fluency (p < 0.001), and learned significantly fewer words on a list-learning task (p < 0.01). Caregivers also reported experiencing significantly more perceived stress (p < 0.001), lower quality of life (p < 0.001), and were more likely to meet the cut-off for clinically significant depressive symptoms on a self-report scale (p < 0.001).

These data contribute to a growing body of literature that consistently points to the need for immediate action to improve the welfare of caregivers.

Caregivers of cancer patients face intense demands throughout the course of the disease, survivorship, and bereavement. Caregiver burden, needs, satisfaction, quality of life, and other significant areas of caregiving are not monitored regularly in the clinic setting, resulting in a need to address the availability and clinical effectiveness of cancer caregiver distress tools. This review aimed to determine the availability of cancer caregiver instruments, the variation of instruments between different domains of distress, and that between adult and pediatric cancer patient populations.

A literature search was conducted using various databases from 1937 to 2013. Original articles on instruments were extracted separately if not included in the original literature search. The instruments were divided into different areas of caregiver distress and into adult versus pediatric populations. Psychometric data were also evaluated.

A total of 5,541 articles were reviewed, and 135 articles (2.4%) were accepted based on our inclusion criteria. Some 59 instruments were identified, which fell into the following categories: burden (n = 26, 44%); satisfaction with healthcare delivery (n = 5, 8.5%); needs (n = 14, 23.7%); quality of life (n = 9, 15.3%); and other issues (n = 5, 8.5%). The median number of items was 29 (4–125): 20/59 instruments (33.9%) had ≤20 items; 13 (22%) had ≤20 items and were psychometrically sound, with 12 of these 13 (92.3%) being self-report questionnaires. There were 44 instruments (74.6%) that measured caregiver distress for adult cancer patients and 15 (25.4%) for caregivers of pediatric patients.

There is a significant number of cancer caregiver instruments that are self-reported, concise, and psychometrically sound, which makes them attractive for further research into their clinical use, outcomes, and effectiveness.

Several interventions have been developed during recent years to support informal caregivers of palliative patients. However, these trials reported low enrollment rates. Employing a newly developed group intervention, existential behavioral therapy (EBT), one study reported that only 13.6% of approached informal caregivers participated. The purpose of our present study was to identify the reasons for this low enrollment rate in order to improve future support designs.

All participants in the EBT trial (intervention vs. standard-care control group) as well as those who declined participation during a 4-month recruitment period were studied prospectively over 12 months. Andersen's behavioral model of healthcare service use was employed to identify group differences between acceptors and decliners: predisposing (age, gender, education, family status, relationship), enabling (social support, distance to hospital, caring vs. bereaved), and need factors (psychological distress, quality of life) were evaluated in a binary-logistic model.

Some 94 decliners were compared to 160 EBT participants (n = 81 intervention, n = 79 control). Caregivers who took part were significantly more distressed and suffered from a lower quality of life compared to decliners. Not only these need factors but also predisposing (age <55 years) and enabling (use of social/professional support, familiarity with caregiving institution) factors were associated with EBT utilization. At the 12-month follow-up, EBT intervention participants reported greater quality of life improvements than decliners or controls (p = 0.05). While all groups had mean anxiety scores below the cutoff at 12-month follow-up, decliners showed better improvement in anxiety compared to EBT participants (intervention p = 0.04, controls p = 0.03).

On average, decliners are less burdened: they may be more resilient, may have better coping strategies, or already have a sufficient support network in place. Screening caregivers with regard to their experienced quality of life and targeting those in need, especially younger caregivers with low levels of quality of life, may help to allocate resources more appropriately.

In this review, we study the effects of dyadic psychosocial interventions focused on community-dwelling people with dementia and their family caregivers, and the relationship of the effects with intervention components of programs.

A search from January 2005 to January 2012 led to 613 hits, which we reviewed against our inclusion criteria. We added studies from 1992 to 2005 reviewed by Smits et al. (Smits, C. H. M., De Lange, J., Droes, R.-M., Meiland, F., Vernooij-Dassen, M. and Pot, A. M. (2007). Effects of combined intervention programs for people with dementia living at home and their caregivers: a systematic review. International Journal of Geriatric Psychiatry, 22, 1181–1193). We assessed the methodological quality of 41 programs with the Cochrane criteria and two items of the Oxford Centre of Evidence-based Medicine guidelines.

Studies of moderate to high quality concerning 20 different dyadic psychosocial programs for people with dementia and caregivers were included. Nineteen of these programs show significant effects on the patient with dementia, the caregiver, or both. Due to differences in the programs and the studies, this study does not provide an unequivocal answer about which programs are most effective. Programs with intervention components that actively train one or more specific functional domains for the person with dementia and/or the caregiver seem to have a beneficial impact on that domain, although there are exceptions. Reasons can be found in the program itself, the implementation of the program, and the study design.

Dyadic psychosocial programs are effective, but the outcomes for the person with dementia and the caregiver vary. More attention is needed for matching the targeted functional domains, intervention components, and delivery characteristics of a program with the needs of the person with dementia and the family caregiver.

The aim of this study was to explore the symptom experience of patients with cancer, identify changes in symptoms over time, and explore the congruence of symptom reports between patients and their informal caregivers.

This was a prospective longitudinal evaluation of symptoms over 1 year from start of treatments (T1) using the Memorial Symptom Assessment Scale. Assessments and follow up took place at 3 months (T2), 6 months (T3) and 12 months (T4). A heterogeneous sample of 100 patients with cancer participated, providing 325 assessments over time. Furthermore, 82 caregivers also participated, providing 238 dyadic patient–caregiver assessments over the same time.

The most commonly occurring, and by far most distressing, symptom was “lack of energy.” Common symptoms reported were lack of concentration, difficulties sleeping, shortness of breath, cough, pain, dry mouth, and feeling drowsy. Symptom occurrence and distress improved over time, particularly from T2 to T3 (p < 0.05), but the “chronicity” of some generic symptoms was notable. Caregivers tended to overestimate occurrence and distress compared to patients, particularly in symptoms of psychological nature; κ statistics had a highest coefficient of 0.45, suggesting moderate agreement between patients and caregivers at best.

More attention needs to be paid to the commonly reported symptoms by patients, as they have the potential of impacting on quality of life (QOL). As patient–caregiver reports had moderate agreement, effort should be directed to improving this agreement, as caregivers are often communicating patient symptoms to clinicians.